2nd Annual Tell Your Kids You Love Them Day

Had a rough weekend. It all seemed to hit me again like it did 11 months ago. I spent a lot of time in bed trying to sleep away the pain. For this reason, this blog entry was a couple days delayed.

About 10 days from today it will be 1 year since Jake took his turn for the worst and we knew that there would be a sad ending to his long journey. On Dec 19th of last year I wrote the blog entry "A Scare". At that time I was hopeful that things would turn out fine but on December 30th the bottom fell out and as I wrote the blog entry "In an instant" we knew we were close to the end. On this day last year however, things still seemed promising and I instituted the annual "Tell Your Kids You Love Them" Day:
(From last year's blog)
Apparently it is Christmas time in the world. It all seems to be going on but I have not really noticed it. Life and India has taught me and reinforced what matters. Kiss and hug your kids for me today whether they like it or not. Tell them you love them even if you never have. If you are a Dad who never quite felt good about it or embarrased because that is not how you were brought up, do it anyway. I taught my Dad to do it. I think he actually likes it. Today December 19th is the first annual "Tell Your Kids And Friends You Love Them Day" There is no question in Jakes mind how much we love him and no question in our other kids minds either. In a world that is out of our control, you have control over this. If you don't have kids tell someone you love how much you care. Sit them down and spend a moment, look them straight into their eyes and spend a few minutes letting them know. Do it for Dan. This is the only Christmas present I want this year and every year. I have officially created this special day
That was last years message. Do it for me, for your kids and for yourself. And as always a continual thanks to everyone who has been a part of my life especially this year. Oh and by the way Alex and Anne... Daddy loves you.

Blogging In Heaven, A Birthday Message For My Son Jake

Dear Jake,
I am pretty sure that you can read from where you are. You know and I know as well as many others that you are around. You have given me strange and funny signs in the last 10 months. Odd, but irrefutable proof that you are ok. As was the custom of your mother and I, on your birthday we would tell you about the day you were born.

November 15th 1988:
I got a call from your mom telling me that she was on the way to the hospital to have you. I was at work and she was at a routine checkup looking at your progress. In the past 9 months, you had spent a great deal of time causing problems. Your mom stayed on the bed nearly 6 months to have you be safe. Your mom had Placentia Previa. The doctor who along with your mom, was helping to be sure you would be fine and healthy told her that she was not going home at all today, that it was almost time.
Your mom called me and told me that we were going to have a baby today. (At least that is what I heard) I was at work and instantly became Dick Van Dyke, and Ricky Ricardo when their wives told them it was time. All of my logic flew out the window as I walked around excited and nervous in the shop at Captain Video wondering what I should do next. My employees said "Go Captain, Go." I raced out of the shop, jumped into my RX-7 and sped down to Scripps in La Jolla. (Kind of felt like I was in a movie..go figure) As I headed closer and closer to the hospital, I found myself getting more and more nervous and excited. I parked the car and ran through the parking lot and headed towards the maternity ward. With each step I grew more nervous and as I headed toward your room, I realized that I was probably hyperventilating. As I entered your room, I fully expected that I missed the entire event only to find out that my imagination had run away with me and that you were still many hours away from being born. As a matter of fact you would not be born till the morning of the 15th. As I calmed down realizing that you would not be here till possibly the next day I began to feel hungry. Very hungry. I told my wife (who at this point was not allowed to eat anything but ice cubes) that I was going to the cafeteria to get something to eat. (This was probably not a great thing to say, she was starving! )
Your mom had a tough labor. You were turned around the wrong way (always a renegade doing what you wanted to do) and caused your mom a lot of pain. The pain of birth and the end of your life on this earth were the only times you ever caused us pain or sadness. Your life on this earth was filled with joy for us and anyone that knew you.
Anyway, long story short, you were born. You came out crying and the one thing I will always remember is that when I picked you up and said "Hi Jake!" and you stopped crying immediately. You knew who I was, recognized my voice from the 9 months I spent talking to you from the outside. I walked to the parking lot towards my car hours later to go home and sleep for a while. As I walked to the car I looked at my life and vowed to be the most responsible and fun Dad that I could be. I began to look towards the future and all the movies we would watch together and fun times we would have. And did we have fun! Your brother arrived just 11 months later, the best surprise I could have had and I watched you grow up with your sister and brother. Always the calm one, the logical one. Knowing more than anyone your age. Truly ahead of your time. Watching my little family was and continues to be the greatest joy in my life. I wish every day that you could have been with me longer and I look forward to seeing you one day. Till then I will always celebrate your birthday with a feeling of life and thanks for all of the joy you have given me and the rest of the world. I love you, your sister and your brother with a level that compares to nothing else in this world. I am thankful for that, and for you sharing your life with me. Even some of the worst times were some of the best times. I would do it all over again with you.
I love you Jake, Anne and Alex, strongly and forever. Happy Birthday "Jake-old!"

While we try to teach our children all about life,Our children teach us what life is all about.~Angela Schwindt

Back to Hyperbarics

Well, I have been packing now for about a week in preparation to move out of the duplex. In my life now, I try to listen and let life take me where it will. About a month ago, I found out that my roommates would be moving out. I took this as a sign that it was time for me to leave the house where Jake died. "Where Jake died", still I have to pause in misery after I write that sentence. Still, it is unbelievable and so wrong. Still, I attempt to try not to dwell too long on it each and every day. The packing has had it's moments especially when I was packing up some of the things we decided to keep that belonged to Jake. As things were being packed up and large items moved, I have had sad reminders of his sickness in the form of objects from his treatment that fell behind couches, and cabinets. There always seems to be something to remind me, be it a sterile alcohol pad used for his injections or some medicine left behind used to treat his side effects. I am hopeful that this move will help me start over and remember mostly the good times with Jake.
I was contacted by Marshall's wife Pat about a lady whose son was stricken with Brain Stem encephalitis, a condition that swells the brain and can cause nerve damage affecting motor skills and speech. Such was the case with this young 36 year old man with a 10 month old child. Pat told me that they were looking into Hyperbarics at the San Diego Center for Hyperbaric Therapy which was one of the places I initially took Jake. She was looking for people to help with his treatment by driving him to and from the center. I volunteered even though I was a little nervous about how I would feel the first time I walked in without Jake. When I entered, I was greeted by Jennifer, one of the owners with a nice hug. We talked for a moment about Jake and she told me that they were seeing more patients getting treatment for brain related injuries with a lot of success. As I left Dan, (the name of the person I was bringing to treatment) and went outside to wait while he had his treatment I was surprised at how I felt. I was a little nervous about coming back to this place after Jake had died. It has always been pretty hard for me to go back to any place Jake had been when he was alive. However, as I walked out of the building I felt that I was not alone. I felt that Jake had been standing right beside me the entire time as if to say "Dad you are doing a good thing." Once again Jake while not physically here was still having an effect on both myself and people around me. It was good to see and talk to these friends I knew just a few months ago when we were treating Jake. There is some kind of unspoken comradery by people that help or go through these trials in life. A sort of everlasting friendship.

A Wonderful Day

It has been a long time since I have written. I felt a loss of ambition and various up and down moments throughout each day. The loss of Jake never really seems to get much easier. The sharp edges of the pain are a little more dull but it is a long haul that I suppose never will really end. For these reasons, I have gone through some moments of less caring and some introvertness the past few months. At least several times a day I still have moments of disbelief that my son is gone. It think this will be forever, no matter what the grief counselors say. It has been a rough year all around with the passing of many public celebrities, Michael Jackson, Farrah Fawcett, Ed McMahon, and a friend Vince Ballardo who just passed this weekend in his sleep. It has become increasingly difficult to live in the house where Jake died and so when my roomates decided a couple of weeks ago to re-locate and my son Alex also decided to move out with friends, I felt that it was for good reason and that I should let life take me where it will, there must be a reason. I have begun the process of packing slowly for an eventual evacuation on October 1st. The economy has not been friendly to me and my job search progress and so, as it seems that it may be a long time before I would be able to consider being a homeowner again I have decided to relocate possibly closer to the beach where I will feel closer to Jake. In order to minimize the pains of moving so many items that I rarely will be using for a long time, I have begun selling selected items that may be of better use to others. One such item was the Les Paul guitar that I bought when I was about Jakes age and had given to him. This is where the title of this post comes from.
I advertised the guitar on Craigslist and had quite a few people interested in it. One person however stood out and asked to come see it. His name was Josh and he arrived at my house with his mother. As we started talking I came to find that he was born the same year as Jake and that they would both be near the same age now. As I spoke to him and his mother we both realized that this young man was very similiar in personality to Jake. It became apparent to me that this was the young man I wanted to give the guitar to. One thing led to another and an hour later we had watched Jakes 18th birthday video and spent the rest of the time talking about our kids. It felt very right to give this guitar to Josh. He seemed to have very similiar positive qualities just like Jake and I felt that Jake would approve. It was one of the first times I could talk about Jake and actually feel happy and proud even though he was gone. I could tell after talking to Josh and his mom that Jake was still changing other people's lives for the better and that made me happy. I will not see Jake again for a long time but I live for these positive moments and the ability to be able to show people how proud I am of him and all my kids. On the 9th of every month the aniversary of the day that Jake died, I think about him more than normal and try to keep busy. I have decided that on the 9th of every month I will plan to do something to help others for the entire day. I believe it is a positive way to deal with the anniversary of his death by trying to take the grief and turn it into something helpful. So the 9th of every month is up for grabs if anyone needs help from moving to computer help or anything I can do. (except gardening or painting, I hate gardening and painting!)

Five Month Update

Click on the link:
http://www.intelligentsolutions.tv/video/5monthupdate.wmv

Update From India

I have heard back from India regarding Jakes final MRI and the effectiveness of the Cytotron. My feelings as well as the feelings in India was that Cytotron was successful at least at containing the tumor during treatment but the disease got the better of him when we got home. It is unfortunate that only I was able to see the improvements in Jake and no one really saw this in the U.S. except for the video of him walking down the hall by himself in the blog post "Detailed MRI Results". The pictures of Jake in India and his physical improvements in color and strength, especially while being able to be off all chemotherapies and medication leave me with no doubt that this treatment was effective at least to some degree and will improve over time.

I sent the following letter to Dr. Sibia to thank him and Dr. Kumar and to summarize my feelings:

Dr. Sibia,
Thank you for taking the time and perserverence to get some answers. I will look forward to Dr. Kumar's comments.
My feeling is still that Cytotron is an excellent therapy and we may have had better results if we had tried it first rather than last. It is unfortunate that it is not available in the United States at this time. Still with that being said, I believe that in order to combat a glioblastoma it will probably be necessary to be able to do greater coverage of the entire brain simultaneously due to the diseases tendency to spread.. I believe the areas we treated worked at least during treatment and that his eventual loss was due to tumor growth after treatment was stopped. If the machine was in the U.S. he could have continued treatment. It will be interesting to see where we are in 5 years with this technology. I suspect that the areas of simultaneous treatment coverage will be increased. I hope to see the machine in the U.S. one day.
I also believe I should have had him on hyperbarics during his U.S. and India treatment. I should have put him on oxygen during the trip home and stretched the days out so it was not so hard on him. In addition, I should have had a mask on him as he caught some type of fever in the airport. He never really recovered from the trip. I do not blame myself for these oversights. In the end, the disease probably just got the better of him. Unfortunately we were all forced to try to learn too quickly and make decisions with no experience. We never dreamed of having to make decisions like this when Jake got sick in 2006. Only time, research and experience will teach us how to battle this disease.
That being said, I will never forget my times in India. They were some of the most wonderful and most difficult times of my life. I am forever changed by the experience. My views on life and what is important have changed for the better, forever. It was very rewarding to see Jake's walking improve, watch him get some sensation back in his legs and just to spend so much time with him when he was not feeling effects of any chemotherapy. After treatment every day at 3pm we would lay on the bed in the hotel and Jake would rest his head on my shoulder as we watched an episode of Star Trek. Both James T. Kirk and Jake were always battling against impossible odds. As Jake would lay with his head on my shoulder I would contemplate how wonderful it was to be able to spend this amount of time with my son. I feared that it might only be for a short time, the fact that he was fighting a grade 4 glioblastoma never left my mind.
In the end, Jake was able to be surrounded by all the people he loved and who loved him. I am not really a very religious person but in the times after Jakes death I have had signs that Jake is now happy and well. Some signs completely unexplainable by logic. I have also been fortunate to visit a renown psychic medium and the experience has left me convinced that Jake is fine and that I will see him again one day. I believe it would be short sighted to think that there is only this life. Jakes life touched and continues to touch others. He has made change in people and the world. Given a choice, I would have rather that he taught people less and won this battle or never got sick at all but this is out of our hands.
I will always remember fondly our morning coffee and talks about life during Jakes treatment. You are a good friend and have taught me much. I hope to surprise you by walking into your office for some coffee someday. I hope that the Cytotron research continues to grow and help others and that someday I may be able to help with it in the United States.
Dan

Magical Tribute to Jake

We have put together a magic show with performers from the Hollywood Magic Castle as both a fundraiser to help pay medical bills and to send sick children from Rady Childrens Hospital to the event for free.
Everyone is invited. Helping other sick children feels good and would make Jake proud.
To see the flyer click here:
http://www.intelligentsolutions.tv/jakebenefitflyer.pdf
The address of La Costa Canyon High School, where the event is being held is:
1 Maverick Way
Carlsbad CA
The event will be held in the auditorium
Here is a link to the event via google maps:
http://www.mapquest.com/maps/map.adp?country=US&countryid=250&addtohistory=&address=1+Maverick+Way&city=Carlsbad&state=Ca&zipcode=92009&submit=Get+Map

Not Doin' So Great

Having gotten through a great portion of Jakes room, I can see that eventually the task will end. I have removed about 3/4 of the things that identified Jake to me ie: his music and movies, clothes and some books but I still need to go through all of his writings and things from when he was a younger child. I am progressing fairly well in the re-organization of my life with things being completed that were on hold for the last couple of years. As I start to see an ending to this portion of my grieving I seem to actually have more saddness. Similiar to reaching the end of a book that you really enjoy. As sad as the ending is you still read to the very last page. Putting away Jakes things, although painfull is sort of like holding on and continuing to read a book when you already know the ending. There is that sad feeling of almost being done but in this case there is not another book to read next. I guess that is why it is called a chapter in our lives. There will be a time when I put away the last part of Jakes life and officially close the physical memories of his lifetime... close the read book so to speak, and that reality makes me sad. All that is left is to continue by creating new stories now about Jake ie: the "Relentless" book and trying to do things that carry on what he has given and taught all of us. I miss him. No matter how much I write about it I cannot explain in words how much I miss that boy.

On the train, On the road back

I am on the train back from San Luis Obispo after visiting my mom and my brother Jack. On the train by myself, yet another first and a memory of Jake and I going to the airport in Bangalore by train. Another realization of a time we had and can't have again. Interesting all that the human mind remembers. Songs come on the radio that I have not heard literally for years and I still remember the lyrics. I suppose everything is stored in our brain somewhere. Every moment of our life, every memory. Using this logic it appears that I will forever reminisce sadly and sometimes fondly of my life with Jake. There are probably hundreds more "first times" I will experience and emotionally deal with in the coming months and years. I have spent the last couple of months dealing with these feelings in several ways. One thing I have been doing is re-organizing my house and completing tasks that went on hold back in November of 2006 when Jake started having symptoms. Initially my first goal was to rid the house of every possible memory of cancer, from syringes to medicines. Even clothing he wore when he got sick. The next chore and truly the most difficult since the funeral has been deciding what to keep. Our good friend Michelle has decided to make both Marci and I quilts from some of Jakes favorite shirts. That took care of the clothes but there are still so many items to consider from music to books, childhood trophies and toys. It is a long painfull process and only something I can do a little at a time. I will hope that I can find mostly joy in memories of these items one day instead of sorrow at what is gone for now.
I have decided now to force myself to be more driven at getting myself out of this slump. One way I am going to do this is by starting my book, the title now changed from "Saving Jake" to "Relentless" a title that speaks to the manner in which this cancer spreads and also to the way Jake decided to fight this disease, with a positive outlook and humor.
The second thing I am going to do is become more focused at work. The economy has not been helpful in this regard but I will succeed through determination.
Lastly, I will continue to try and grow my connection with my other children who were put virtually "On Hold" for two years when Jake got sick. I realize my mourning is not over and to a degree never will be but as I have said before, Jake would think less of me if I did not set a good example as he did on how to live and survive in the face of adversity.

As my good friend Marshall has told me in the past, "As bad as things are they can always get worse". I have several things to be thankful for.

1. Jake was not taken by a drunk driver or kidnapped by another person. As Jake always said "Cancer is not prejudice and it has no conscience, it gets who it gets"
I would have a much more difficult time if his death was caused by another person rather than an unnamed killer.

2. Jake was luckier than many children we saw over the last couple of years at Childrens Hospital. Many died at birth or shortly thereafter. It was not uncommon to see 1 and 2 year olds in make-shift wagons being pulled by a nurse down hospital corridors with infusion pumps connected to their body. Jake and I would look at each other during these times and as was normal for us, speak without speaking. We both knew that he was luckier than many.

3. At least 18 of Jakes 20 years were very happy. The last two years of his life although difficult had many good times as Jake got close to all of his relatives and many people he never had met before.

4. Jake changed the lives of many, promoted awareness for new types of cancer therapy and showed so many what is important in life. To this day I find pictures of him in many locations, from family to friends. I am told constantly that when life is getting them down, they look at Jakes picture and remember how to deal with adversity.

Long Emotional Days Part 2

On the subject of long emotional days and the multiple layers involved in mourning there are significant areas that seem to be much more difficult then others and some that are guaranteed to be terrible. Such was yesterday when I began the sad sad process of moving some things out of Jakes room and into mine to make room for a new roomate that will be coming aboard in June. My niece Teresa will be moving into Jake's room and Sharissa (the new roomate) into hers. It did not help that I let my anti-anxiety medicine run out. Sufficed to say I became a complete basket case as I began to move things out of Jakes room and into mine. Part of it was the confirmation that Jake was gone and his room would no longer belong to him. Another part was seeing all the music and movies he had bought and set up meticulously along with other articles that defined his identity. After moving several items of Jakes we have decided to keep into my room and watching as simultaneously Jakes room became less Jakes room and more of a generic room my sadness increased. Such a statement of the end of his life on this Earth. I began looking at some of the movies he had collected over the last few years. Movies that most people would not even watch but movies that Jake found meaning and laughter with. I looked back on how every day Jake and I would go to the book or cd store or out to lunch. Jake got anything he wanted in those last couple of years. From books to cd's to lunches. The result, his physical legacy now partially in my room and his and I walked over to Pam's house my neighbor and collappsed on the bed (for the upteenth) time crying hysterically. I explained to her that I did not know if I would be able to stand seeing his things every day without being sad. I thought I might have to pack it all up till such a time as my heart has at least partially healed over. I felt it would be a mistake to jump to any quick decisions.
After the cry as usual I felt better and when I went back home I saw the possibility that I may be able to get myself to a point where I can see only the positive things about Jakes earthly goods and not concentrate on the negative. For now, that is what I will try to do. I am not sure what this blog entry does for anyone. Perhaps it is a guide for what to expect so that you are not blindsighted should a disaster occur. Even though I seem to have outlined many of the major feelings and situations one is liable to go through, there as still many more left that I do not even know about. It is hard to conceive that I may one day be fairly recovered from this. It is difficult to define recovered in this case. As for Jake, when I get this sad, I think of him up there laughing at me and when my time comes one day I know that when he greets me it will not be with him running to me excitedly and giving me a big hug. No, I expect that the first thing he will say to me as he stands there calmly with a mischevious smile on his face is "Well, how much did you miss me?" Then when I want to run to him and give him a hug, I will hear him say.."Wait! First you have to say hello to Indy" (his dog)..."Look at him!"

Long Emotional Days Part 1

I am continually surprised at how I inaccurately assume where I am at in the mourning process. It seems that usually when I state it is getting easier the next day or hour it becomes much more difficult. Mourning the loss of your child has many layers that are not readily apparent. Some days I assume it will be a terrible day and then I am proven wrong and it is just fine. Other days that I think will feel great are horrible. Take the last couple days... Yesterday, I decided to stop by Childrens Hospital as I had not been there since Jake died. I anticipated that it would be a very difficult thing to do as most of my previous visits were with Jake while he was alive. I went however into the building and found myself doing very well. I was stopped several times by doctors, nurses and other staff members who had helped during the course of his disease. Everyone gave me hugs and told me how much Jake meant to them and how his life brought so much joy and laughter to their day. I felt that Jake was still with me (which I suppose is possible because before I got out of the car I said "Jake, you better be right by my side during this!") The visit went well including a session with the staff psychologist as we reminisced and talked about Jake. After the session, I had a final lunch meal at the cafeteria where I had gone so many times in the last few years when Jake was in treatment. It was odd to know that this would probably be my last meal at that location. I no longer have children under the age of 18. Like the last day of school I looked back on the last two years with some fondness, lots of sadness and still a sense of disbelief of what we actually went through in the last two years. Looking around the cafeteria and the receptionist areas I saw some parents that were just starting treatment for their sick child and felt sorry for the long road that was just about to begin for them.
My last stop for the day was the San Diego Hyperbaric facility to return a chair I had borrowed to assist in helping Jake get around. This journey was very sad as I walked into the office for the first time without Jake. The size of the office was of course much smaller than the hospital and as I walked out the door for the last time I paused by my car to look up at the sky and once again ponder the idea that this was all real and actually happening.

Hello World

I have not fallen off the face of the earth. I seem to be doing a little better, accent on little. I still have an impossible time really accepting the truth, and I probably never will. At least a few times a day I stare at a picture of Jake, maybe one on the refrigerator or in a frame on the wall. Sometimes I will see a file or directory on my computer while I am looking for something else. Then I just sit there for a moment and contemplate the fact that I really have lost Jake. The Laurel to my Hardy, one of my most precious friends. To realize again and again that he actually is gone is so sad and I find myself saying "This is just unbelievable and so wrong." I still do not seem to be able to go through more than 2 or three days between crying and breakdowns but they slowly seem to get a little further in between and I still feel like I am walking around in a daze.
On a more positive note, I was fortunate to spend an hour with a prominent psychic medium last week. I am sure this is a controversial subject and I have my own set of doubts and questions. However, after speaking with this person who seems to be able to talk to people on the "Other Side" I found myself more comforted than before and more confident that Jake actually is ok, just somewhere else. It was not so much any concrete facts or realizations (even though there were quite a few) but more in how the medium talked about Jake and his sense of humor and personality even though she had never met him. In the end, as I say, I believe he is happy, healthy, learning and having fun now. I believe I will see him one day and we will all be happy again. Unfortunately the struggle now is to be happy until then and it is a struggle. I have heard so many talk about how they hate their birthdays and are sad to be another year older. Each time I hear this I think about Jake and want to remind them that to grow older is better than the alternative. Fortunately for most, the loss of a child is not something they can wrap their heads around and something I hope they never have to deal with. Every day we are on this earth is a gift.
I am in the process of re-inventing myself after having lost so much in the last 3 years. I have applied to several companies for various possible positions and am re-building my computer business. Not sure how long it will take. It has been a long drop from being a homeowner with 2 companies to where I am now. I miss my theatre but I am happy to be in a home with heat and basic comforts.

Thought For The Day

Well, yesterday was 2 months since Jakes passing and my fingers start to shake with sadness even as I type these words. In general, I am handling things a little better realizing I will never really feel right again. I still think about Jake almost all day and marvel at the uncomprehensible reality that he is really not here and will not be. I think however of the children at Radys Childrens hospital, some born there who will never see the outside and Jake who by contrast had a good 20 years, 18 of them being great. Things can always be worse. Sometimes I wonder if it is true that you leave here when you have accomplished what you need to do and learn. Perhaps Jake finished this early.

A friend of mine told me this saying which I thought was fairly profound:

"When we are born we cry and everyone around us is happy, When we die everyone around us cry's but we are happy."

I hope this is so.

LIVE Through It... Don't Just Survive It.

The topic of the day today was..guess what... Jake. I was talking to Marshall about Jake (Marshall calls me at least once a day) We talked again about how hard it is to come to terms with the reality of not seeing Jake again. The reality that he is no longer on this Earth and how hard that is to cope with. We talked again about the fact that you never get over it but simply survive it. However somewhere in the conversation I decided that rather than survive it, I need to LIVE through it. Meaning LIVE my life which is so precious. I really don't want to simply survive it. That is not much of a tribute to Jake who never complained and fought so hard against this devastating illness and yet always kept a smile on his face. I need to LIVE life for my and Jakes sake.
I went to my first grief group session tonight. I was not expecting miracles and did not get any. I did however get a sense of comradery being around others who lost their child. There were not really many answers just a sort of family or familiarity feeling. It was interesting to see that even some parents going on their 17th year of loss still have moments of utter sadness. This is something that will be with me for a lifetime but I will try and make my lifetime as nice as possible if for nothing else to honor Jake.

Another Day

Another day. That is what it seems like most of the time. Another day in a string of non-descript days. I am doing a little better now or so it seems. I tend to break down now about every 3 days instead of 2. I never know when it will hit me. The only think I know is that it will be when I least expect it. I will start to feel strange and nervous and by the time I figure it out, it is usually too late. Today was one of those days. Sitting eating dinner next door and I felt the feeling. I was not sure what it was for a while and then when I figured it out I went over to my house to take my daily anti-anxiety medicine. As I stood in the bathroom and took the cap off the bottle of medicine I looked in the mirror and said to myself "Yep, another day". Then I laid down on the bed did a little crying and waited for it to pass. It took about a half hour and I felt better. Funny how crying helps. Another day done, now to sleep to start the next one. I am going to a grief group on Wednesday night. Hopefully that will help. Never thought I would be going to a support group on a Wednesday night. Seems more like a bowling night. Oh well, another day tomorrow.

Again

Hit from behind again. I have been feeling better and almost feeling guilty about it. Little by little it has become slightly easier to walk by his room and to see pictures. Then listening to my voicemail messages of many people that called to wish me happy birthday I up came the message from Jake that I had saved. Wasn't expecting it and although I will never delete it (it is also on the video I made) I was hit with the shocking sadness that I will not see my son in this life ever again. I was talking to Kate my Dads wife and my stepmom yesterday. Kate also lost her daughter over 25 years ago. She told me and I agree that the hardest thing is the continual realization that they are physically gone from this world and you cannot see them again in this life. You try to think of them as off to school or camp or on vacation but that reality of their death keeps hitting you and it is shockingly sad. Even after the many years since Elaine, Kates daughter died of cancer she still even now suffers the loss and misses her from time to time. I guess I am in for a long haul. Everyone thinks I am doing so well but sometimes I wonder if I am just a good writer. I miss my little Jake.

Todays Lesson: Birthdays and Holidays

Today was a interesting day. My 52nd birthday. I had been thinking about it off and on during the course of the last couple of weeks. Many people had called to see what I wanted to do. Family talked about party's or some type of special event to try and make it as much fun as possible. People are so nice and caring. I received many calls during the course of the week and today. While I am certain that many were concerned what it would be like to have my first birthday without one of my children and so close to that sad day when Jake left us, many may have forgotten or were not aware that Jake was actually officially diagnosed with Glioblastoma Multiforme Grade IV on the day of my 50th birthday now 2 years ago today. Until January 9th at 2:40PM of this year when Jake left us, my 50th birthday stood out as the worst birthday and the worst day of my life. On the other hand, the stress of turning 50 was completely lost on me on that day as the news of Jakes sickness had made me understand that 50 is simply a number and one we should be happy to reach rather than dread. I now look at birthdays as presents in their own rights just as I do each day that I am on this earth. My birthday will always carry mixed feelings for the rest of my life as will each and every holiday that will occur during the course of this and subsequent years. Losing Jake has grounded me in what is important and although I feel I was always fairly well grounded in what matters, there is no question now. It is of course health, family, friends and pets and that is it.

As I climb out of my emotional and financial hole and continue on the ride of life that took such a severe and awkward turn 2 years ago on this day, I realize that I will never have the same amount of motivation for the transient things of this world. True, I will look forward to emotional and financial stability, but the dreams of the house, nice car and such will never carry the same amount of weight. Holidays and birthdays will probably always be difficult but my motivation to do more than just get through them will be Jake. I think about him up in heaven or wherever he is. I think about his bravery and the smile that never left his face during the 26 months that he was sick and I will continue to try and make him proud. I equate the holidays and birthdays as sort of the "Our Song" that one has with a girlfriend or wife. That familiar tune that can bring sadness and a rush of memories when it comes on the radio and you are reminded that "That was our song." Choices, always choices as to how we deal with things that haunt and try to destroy us when we hear or relive the song. For me, I remember a particular time in my 20's when I had a shocking breakup with a serious girlfriend. I walked to the car that morning after discovering events that had been happening for months. As I drove away with tears in my eyes, one of my favorite Frank Sinatra medlies "Angel Eyes/Gal That Got away " came on the cd player with these and more poignant lyrics:

"Try to think that love’s not around
Still it’s uncomfortably near
My poor old heart ain’t gaining any ground
Because my angel eyes ain’t here"

"The night is bitter
The stars have lost their glitter
The winds grow colder
Suddenly you’re a lot older"

The road gets rougher
It's lonelier and it's tougher
With hope you burn up
Tomorrow maybe she'll turn up
There ain't no let up the live long night, the night and day...

As I listened to the song now some 20 years ago, I had thought "Great! now every time I hear this song I am going to remember this time and be sad. This sucks!"
Then something happened. I decided to play the song over and over. I did it perhaps 10 or more times and sang it as loud as I could because I decided that no girl or romance would ruin one of my favorite songs. My idea worked and after playing it over and over again it remained and still remains one of my favorite songs. I did not let the circumstances of the situation ruin my love for life, for "The Song".

Of course losing Jake is much more devastating than the loss of a relationship. In fact, I do not believe there can be anything more difficult than losing a child. If there was such thing as an evil force out there that was trying to destroy me, they picked the absolute worst thing that anyone could think of. However like the song 20 years ago, I promise for my sake, my children's sake and to make Jake as proud as he made me, to never give up and and die emotionally. To do this is disrespectful to Jake who never complained and always smiled all the way to the end. Although he would never really be mad at me, he would be looking down at me with a confused look thinking "What are you doing???" I will continue to make Jake and the rest of my family as proud as I can by celebrating his life and showing all that you do not quit. One day at a time, one holiday at a time for the rest of my life.

The Long Haul

In this journey, I guess it is important to document my feelings as I go through this next phase of my life without Jake. I hope this will be helpful for others. I would not wish it this experience on anyone but some may have to face a similiar situation some day.
I am writing this while sitting at the airport waiting to leave for Phoenix to do some computer work. Once again I was caught by surprise when I walked into the airport and realized that the last time I was in an airport was with Jake. Once again I felt the familiar wash of panic and sorrow when I realized where I was. Another memory of Jake and I and now just I, that is under my belt. I am not too sure how many more of these there will be I only know that they will come as a surprise.
I am working more now although it seems strange to not be checking on Jake every few moments. I am in the process of re-inventing my life after being a caretaker for the last 2 years. I walk around the house a lot in a fog but as the days go by I seem to get more work done than the day before and have longer times in between the sorrow. Still, when I reflect on the fact that I am doing a little better I begin to think about the fact that he really is gone and that reality hits me hard. If there is one consolation in all of this, I no longer have any fear of dying as I believe I will see him then. Don't let this make you think that I am suicidal, I am not. There is just some type of comfort knowing I will see him again one day.

February 8th 2009

It is the evening of the 8th and one day before the 1 month anniversary of Jakes passing. Even typing that sentence sends a shot of deep sadness through my body. I left town for 5 days at the end of January to try and get a change of scenery and thoughts. I went to Santa Cruz for 2 days and then to San Luis Obispo to visit my brother Jack. The trip was nice but was filled with memories of Jake that hit me unexpectedly from behind. I have decided that the hardest thing to get through are these instant reminders that you are not ready for. The first one occured when I was bringing my bags to bring to the hotel. As I wheeled the bags toward the counter I felt my heart racing. A aura of panic began to wash over me. It was not until I checked into the hotel and layed on the bed when I realized that the last hotel I stayed in was with Jake in India. The episode lasted about 30 minutes and I cryed like a baby. Afterward, I felt better, somehow the tears seemed to release the tension and stress in my body. I had a couple more episodes during the rest of the trip but less in severity. I expect it will take a long time to be fully functional again. It seems that I get about 1 minute better each day and have some type of breakdown every few days. I continue to try and remain productive and succeed most of the time. Other times I just think of excuses to leave the house to break the monotony. I think it is important to perservere while still experiencing these feelings. I try to remember that Jake was so strong and positive during his illness and he would want us all to be happy and do the same. For us to fail in this would be to let Jake down to an extent. I am sure if he could talk to me now he would tell me to stop acting silly and enjoy life like he did even at the worst of times. He is a tough act to follow.

Jakes Funeral Program

For those of you that could not be there but have been with us throughout this journey, I am posting the program that was handed out at the funeral that includes quotes and Jakes first letter.
http://www.intelligentsolutions.tv/pastelfamily/jake/jakefuneralprogram.pdf

Jake Pastel Memorial Video

Click on the link below to view the memorial video. The hardest video I have ever had to make and the most important.
The video is aproximately 16 minutes long but in my opinion worth every second. I believe it succeeds in seeing the many sides of Jake. For those with slow internet connections you may also right click and save the file to your computer. Otherwise be patient. I hope you all can enjoy at least a part of what Jake was to all of us.
http://www.intelligentsolutions.tv/video/jacobpastelmemorial.wmv

The Funeral For Jake

The funeral for Jake was beautiful and attended by many. Almost the entire church was filled. Afterward, there was a reception in the Parish hall where people ate, watched the video and shared stories of Jake. Both Marci and Alex had moving Eulogies and my father sang a song with Pat Crawford. The program and memorial card was beautiful. We could not ask for a better celebration of family and friends.
There is a strangeness in my life now as well as the rest of my family and friends. For the last 26 months we have in one way or another woken up each morning and continued a quest to keep Jake alive. This culminated in the funeral last night when we kept him alive in our hearts. Now that time is over and it is time to move back on to the business of our own lives. Indy, Jakes dog, just jumped on to my lap with his front paws while I was typing this to tell me he needs to go outside. He cannot open the door himself and has reminded me that others still need me. I now need to re-invent my life. The caretaking portion of my life which was so focused on Jake the last two years is now over and I need to re-focus my attentions to such things as a new job, my own health and the well being of the rest of my family and friends. I hope to never have to deal with cancer again. Cancer as defined by the dictionary as any evil condition or thing that spreads destructively. I could not begin to thank all of the people that have been and remain involved with me and my family over these past 3 years. All of you know who you are and that we are grateful. I hope that I can be as helpful to others as you all have been to us and that none will have to experience even a moment of the type of pain my family has experienced.
This blog will continue. Sometimes with the same frequency and sometimes more or less. The story which started with Jake will now expand more to life and happiness without Jake in this physical world. For the record, I do know he is happy and healthy now. My 30+ years in electronics and computers and the logic I have developed over these years still cannot compete with signs I have been given by Jake himself in the last couple of weeks since his death. The real question in these situations is not how Jake is but how I and my family will be. As I have said before there really are only two options, quit or continue. I will continue and make Jake and everyone proud. I have started the book that chronicles the last 2 + years. It is not going to be so much about beating cancer then it is about succeding against difficult odds and making life happen. I hope this blog and the book will become an ongoing inspiration to help others in times of trouble or need. I hope that this experience continues to let people remember that life is short and periless. We are fragile organisms that walk life as if on a tightrope. One false move and we can fall off the wire and die. Kiss and tell the ones you love how much they matter. Remember what is important and that the blessings of life are not a big house but rather a moment with a good cup of coffee with a friend. Continue to reach out and make friends and help others. If I can succeed in this then I am helping do Jakes work, continue his life and remain his father one of the many influences in his life that helped him improve on what he already is and continues to be.

The Jake Wake

Last night was the wake and vigil. Many people came to pay their respects and speak about Jake. I had finished my memorial video which I will be posting later for those of you that could not make it but would like to see it. It was a labor of love and one of the more difficult things for me to do but it turned out nice. I had to create it over the course of several days as it was a very emotional process. At times I actually enjoyed the moments of looking at pictures of Jake before he was sick and behaving like a normal teenager. The video seemed to keep him alive and right next to me as I was making it. In the end I get mixed feelings of joy and sorrow. Joy for what was and sorrow for the same. I had always figured on making a wedding video not a memorial.
I went over to the church early with my children and niece. It felt so strange to be driving in a car dressed up to go to my sons wake. I knew that my children felt the same way. Neither of us talked much. When I got to the church I was pretty sure I would be ok but when I walked in and saw the long welcoming table with a guest book in the center and a picture of Jake on both sides of it, the reality of what was happening hit me and then came the tears. I walked down the isle to the front of the church where another picture of Jake was along with various flower arrangements and his ashes in an urn I had picked up earlier (another lovely memory...NOT). At that point I decided I needed to walk out of the church and sit outside. As I sat outside I watched as slowly Jakes family and friends, all dressed in suits and nice clothes arrived. All I could think of looking at the site was "This should be a wedding not a Wake."
We sat at the front of the church (being one of the guests of honor you get to sit in the front row, another cruel joke) and I lost my composure again as soon as Father Brian began to speak. The evening went on as would be expected with several people sharing some fond memories of Jake and who he was. Then there was the hugging and people sharing their sorrow. It was as I say like a movie that I was watching outside of myself. As we drove home and I reached our street, the insanity and sadness of the last two years almost seemed comical and unreal. The idea that a cancer could invade my son and slowly destroy his body till we were left with only memories is a ridiculous thought that I have never been and will never be prepared for.

Jakes Obituary

To read the obituary, click on the link:

http://www.intelligentsolutions.tv/pastelfamily/jake/jakeobits.pdf

The Little Things That Matter

Todays Lesson: "The little things that matter. "
Immediately after Jake passed, I went through the house like a whirlwind getting rid of all medications, syringes, anything that had to do with Jake having Cancer. During this last week, I continue to find bad memories of that time in the form of drug receipts, alcohol sterilization pads, etc. I have gone through my filing cabinet removing anything not necessary anymore.
In the course of going through my filing cabinet, I came across a couple of things that I had forgotten about. The first, a present given to me from Jake when he was too young yet to write. Jake and I always had a thing about getting Slurpees. Anytime he was sick with a cold I would get him one and if I forgot he would say "I know something that would make me feel better" and then I would remember. This continued throughout his entire life and through his battle with the Cancer. It was an unwritten rule that if he wanted a Slurpee even at 11pm I would go and get him one. When he was very young he made me the cutout on the right and I have saved it
It is the little things that matter. It is the things you don't know will matter that matters. The Slurpee was just one of them. My prize was Jakes happiness which he outlined in the essay below, either when he was in Jr. or Senior high school. It is good to know that in his short time here on Earth that I was loved and nice to see it put into words. These are the things that make me happy and sad at the same time. Happy to know I made him happy, sad to know I cannot see him right now. Memories will have to do for now.

Click on the link:
http://www.cytotronforcancer.com/cytotron/mydadthemoviestar.pdf

Incredibly difficult

It is not getting easier. Although I have really been mourning Jake for over 2 years when he was not the Jake I used to know he was always tangibly there. Now I realize with immediate fright and sorrow that I cannot touch him or hope to see him for a long time. I go to the beach almost every day and that seems to give me some benefit but the loss of his physical prescence, the loss of my son is unimaginable. To think that we will not have coffee together, go to the book store or any of the things we did is so sad. I have lost one of my best friends. As the days go by my realization of this fact increases and when I look at pictures I see only what used to be and will not be again for a long time. Knowing he is healthy and happy now is my consolation. Knowing he has helped and continues to help others is another.

Happy Birthday Anne!

Today was our daughter Anne's birthday. She is 27 today. We went out to lunch where we do each year, "The Old Spaghetti Factory". The celebration was nice but also sad as this is the first occasion where we are without Jake. There will be many more holidays during the coming year. All of them different now. We all seem to agree that although things will get easier, Jakes passing has left a permanent hole in our hearts that will never heal. Yesterday I did quite well during the day but today was much rougher. I continued on the memorial video and wrote Jakes biography two things I did not see it coming two years ago. Tired and exhausted mentally now I am welcoming the mental break of sleep as we get one day further away from January 9th when our entire world changed forever.

Memorial Services Information

Jake Pastel Memorial Services info

The Wake/Candlight vigil: Monday, Jan.19th at 7:00pm

Funeral Service: Tuesday, Jan.20th at 5:00pm

Both Services will be at St John's Catholic Church in Encinitas.Corner of Encinitas Blvd. and Balour

Bonfire for Jake

Bonfire Tuesday January 13th at 4:30pm Moonlight beach for Jake Pastel
We are having a bonfire for Jake tuesday at Moonlight beach at 4;30pm for anybody who would like to come.

Premonition

Given the magnitude of this tragedy it is normal for any of us to wonder or worry about what is next or if there even is a next. We would all feel much more calm if we knew exactly what the future held for Jake. Some people believe that this Earth is it and that you die and it is over. For those and any of you who question the future I would like you to read a composition Jake wrote one month before he started showing symptoms. I discovered this document in his notebook from school. As I read it, chills came over me. I have edited out some personal references to friends he mentions for their own privacy. When Jake was finally diagnosed and we asked the doctors about when they felt the tumors started growing they said it had probably been about 1 month prior to showing symptoms. Jake started showing symptoms at the end of November 2006. This document was written at the end of October 2006... Just about 1 month before the symptoms

Premonition

Oct 21st 2006

Today has brought on a weird feeling. It was not weird at all until I came home from work. Work was the average retail day. I was very busy. As I left work I had to take a co-worker home. She lived close by, but says she gets weird vibes walking home.
When I came home I was very loud and absurd. I checked My Space for attention from certain people. I called my only two friends I will call to hang out and hopefully connect me with my group of friends and girls. My two friends did not pick up the two times I called them each. It made me jealous and hateful.
I left with my father to go rent a movie. When doing that I developed the notion and feeling that something bad was going to happen. I was feeling like I was being stalked. Something horrific is going to happen tonight. My mom is out running; my grandmother is dying of cancer, and my father is out driving.
My vision looked different. I could see a lot brighter and clearer. I could have sworn I could hear occasional noises.
I sat in my house looking out the window knowing that if anything were to come for me there is a strong chance I couldn’t fight it because it would feed off the it, “The Fear”.
The stalking feeling was around for a while.
So I am sitting by the window to the right muttering to my dog Indiana.
All I know tonight is It isn’t safe outside. By looking out the window I just could tell that no matter how strong that the "It", “The Fear” could find my Achilles heel no matter what "It" is "It". The dangers. My fears and yours. I’m not scared something might happen, but I do know someone or something is waiting. It is waiting. The hunter is out there. I can’t see it because I, like the animals cannot see it’s camouflage. Which one of us animals is going to…
It is waiting.

It seems to me that somehow Jake realized something bad was going to happen. The idea that he could have sensed this tells me that there is much more going on than we may realize. Exactly what I do not know, but I believe he is there, happy and healthy

Monday Jan 12th 9:14pm

I spent most of the last few days keeping as busy as possible trying to get through the day. All of Jakes immediate family, Marci, Anne, Alex, Teresa and Eric "Fish" were there at his bedside in the end. We all talked him thru the last moments of this life into the other. I do not like remembering these last moments and was hoping to miss it but when it happened very suddenly I knew it was the right thing to be there. Marci and I were there for the first and last moments of this life. The struggle now is to move on and continue. Easier said then done. Not more than a few moments has gone by in the last 48 hours where I am not thinking about it. I have been going to Moonlight Beach where Jake liked to go before he got sick. The days have been spent looking at pictures from the past from our albums and from pictures others have sent. Looking at the pictures before he got sick I realized that although Jake survived the cancer for over 2 years he really was not the Jake we knew when he was healthy. Although he still remained kind sweet and funny, he was not the teenager we knew before all the radiation, chemotherapy and humilities that are cancer. Looking at pictures before he got sick I realized this. I believe a big part of Jake was hanging on not just for himself but more for us. Many times especially when he was became worse and unable to do much of anything for himself, he could see our despair, concern and mourning for his future. Still he never once complained but rather would reach over and pat me on the back. He was no longer able to talk due to the steroids but I know the pat on the back was his way of saying that HE was sorry to put us through all of this.
Looking at the pictures of the last two years gives me some solace in knowing that at least now he is not in pain and his body is not disfigured and unfunctional. The hardest pictures are the pictures before he got sick where he was happy and healthy. Cancer literaly destroyed our son and robbed him of his youth. I suppose I have been mourning for over two years. Now that he is somewhere else, I have moments of calm but cannot seem to get over the fact that sick or not I cannot touch him or smell him. He is gone from this world and I will not see him until we meet later. The finality of this is unbelievable and something I doubt I will ever get over. It is as if someone has actually taken a piece of my own body away from me. I seem to walk around in a perpetual permanent fog. We will survive this and make the best of things by carrying on his legacy with good deeds but in the end it will only be survival.

Jake has started his new life and job

Jake has died at 2:41pm Friday January 9th and is starting his new life

Friday January 9th 8:25 AM

I woke up a few moments ago and checked on Jake and he is still with us. His mom is sleeping on a recliner next to the hospital bed holding his hand. His breathing continues to be shallow as he continues to decline. I have a very hard time being in there now and find myself staying away and going on long walks with Eric "Fish" Fish, one of Jakes best friends. When Jake got sick he asked Eric to be by his side if things got bad and Eric has been here constantly for over a week, sitting in his room even sleeping on the floor. I have told many of his friends that I am going to have to adopt them. Both Marci and I have been very liked by all of Jakes friends as we have known them all since they were little and Marci always had food available when they came home from school while I always had some movie they needed to watch in our 3rd car garage that had been converted to a home theatre the "Dan Theatre" This all seems like a lifetime ago. The theatre gone along with the house. You do not realize how fast times go until they are gone or drastic things happen to change the course of your life. However, that being said, there is an entire life ahead of us and although each of us has been changed forever, our life is not over so we must make the best of it. I have decided that I will finally take a class on cinematography so that I can learn to make my own films. Perhaps I will take a class with Alex or Anne.
This blog cannot help but become a little depressing and negative at the moment. I am sorry for that. I have had so many comments from so many people about how much they appreciate knowing what is going on that I have felt a responsibility to make a post whenever I emotionally feel something. I believe that although this does bring people down it also helps the people that want and cannot be here and brings a further reality to the madness of cancer. It seems these days that the amount of people affected by cancer is on the rise and that too often the story ends the same way. All of us live in a shell away from these realities. I will always remember the day Jake went to the Rady Childrens annual prom for sick kids. He met the limousine at another patients home we did not even know yet this patient lived less than 2 miles away. It made me realize that there are so many sick in the world. Yet we live in a veil a shell where we do not see or feel their pain. This shell is in the form of the homes that hide them or our pre-occupation with the things we need to do. I understand why families that lose loved ones usually continue to help others. It is the one of the things that seems to make us feel better. This is why I will continue the blog and write the book that chronicles Jakes journey. Although it does not have the blockbuster movie ending I was hoping for, I will strive to show all the positive moments through all of the pain.

Friday Jan 9th 2:50 AM

I feel sad, angry and resigned. Jake still alive gasping for air as his body continues to shut down ever so slowly. I cannot begin to understand so I don't even try. I feel good for the good times and sad for what will not be and the man I would have liked to see grow up become successful,start a family and continue to live life. It is hard to believe as I look at pictures of him that his life here is almost over. And yet he hangs on. If I talk to him his gasping increases as if he is trying to say that he just does not want to die. Try as we may we cannot convince him to let go. I only hope that this is over before my daughters birthday on January 14th. Considering Jake was diagnosed on my birthday, I hope this cruel joke does not continue on to my daughter. Apparently God does not give us more than we can handle but I think the correct phrase should be God does not give us more than we SHOULD handle. Key phrases I do not care to hear right now are God works in mysterious ways, Gods will, or everything happens for a reason. Don't get me wrong, I am not blaming God, I simply feel he is rather uninvolved at this moment and I don't really care to learn the reasons why.
My friend Jamie put it best when he told me "This is a real Shit sandwich

Continuing Jakes Legacy...Another Wacky Idea

I think that what helps us get through these times will be to know that we take the things about Jake that have changed us and moved us and keep them going. As I mentioned in the previous post, I believe that Jake has reminded us of the things that are important above all else which is family and friends. All too often we put our "needs" in front of them and can end up missing out on time with others realizing this after it is too late. My friend Sue Foote, who is a breast cancer surviver and coincidentally gave me the idea to do a blog left a comment on the previous blog entry that has given me an idea. Here is the context of the email:

Sue has left a new comment on your post "What I Feel Happy About": Loved reading this, Dan. My mom sent everyone in my family a Starbucks card for Christmas, with a note to take just one other family member out for coffee with it. None of us have done it yet. We will this week. Love, Sue The Jake Pastel Coffee Club Member

As I did in the earlier posts, I would like to put this "out there" to everyone reading this and try to see if it can be accomplished. Once again the power of the people reaching out towards a common good.
Here it is:
I would like to have someone get in contact with the Starbucks company. This company has been very good to us. Not only did Jake like to go there for the Frappacino drinks but several of the stores hosted donations from the workers and then gave us the money to help with our expenses. I would like to create a Jake Pastel Coffee card. The card would have Jakes picture on it and the words "Honest, Sweet Sincere". People could purchase these cards and use them to take others in their family that they were not very close with out for coffee and conversation. A mother for example could use it to help improve the relationship with her daughter. The idea is to simply spend a few moments out of your day doing nothing but sitting across the table from one another one on one talking. The picture of Jake on the card would remind us that the card should not be used simply for ourself but in an attempt to get closer to those we do not know well or would like to feel closer with. This would be the beginning of The Jake Pastel Coffee Club.
So there it is. I am putting it out there. Power of the people. Power of the Internet. I believe that someone knows someone else who knows someone else that can make this happen. I would like to try to see if we can make this happen ASAP and before time and responsibility causes us to forget how sad and terrible times like this can be.

What I Feel Happy About

When I think about my accomplishments over the last two years only one thing comes to my mind. It has nothing to do with Jakes treatment or Jake and my relationship. Although things did not turn out in the end as I wanted, I did make one huge accomplishment. I got people to really know Jake.
When we were first approached with the terror of this disease and it's most probable outcome, I felt that there might be a time when we stand the vigil we are in now, waiting for the inevitable. I pictured people in Jakes room holding his hand and talking to him. According to the nurses, hearing is the last thing to go so Jake can hear and feel emotion all the way to the end. I became determined that Jake feel close to any and all persons that might be in his room. Because Jake was outwardly quiet, most people had no idea as to how funny, clever and talented he is. I set out on the quest to introduce Jake to his family and our friends. I did this by asking each member of my family to take Jake out for coffee "one on one". I insisted that this be done so that both parties would have to communicate directly to each other. To do otherwise would have made it too easy for more than on person to monopoloze the conversation. My idea worked better than I could ever have imagined and Jake became very close with almost every member in his direct and extended family. Each person would remark to me that they had no idea Jake was so clever, creative and funny. Because they had only seen him before in a group of other children they assumed he was just quiet. Now at the vigil, I am comforted that so many people know who Jake is, what he stands for and believes in. I believe this makes Jake legacy that much stronger and more personal for everyone. To further increase his legacy I would ask you to do the same with the members of your family that you do not know. It would have been a shame if Jake died without people knowing him. As none of us ever know how much time we have, I ask you to spend a moment with someone in your family to get to know them. I have personally found that the simple one on one coffee option works remarkably well. Almost no distractions, simply a drink with each other in a nice atmosphere. Each accomplishment makes Jakes legacy stronger and gives at least something back to others which is what Jake would want.

Touched again by India

I just received this email from Dr. Sibia in India. I am again touched and moved by the caring and generosity of the people of India.

Dear Daniel,
We have rarely had a patient like Jake and definitely not had a father like you. You have both become our extended family. If you accept the following offer it will be an honor Sibia Medical Centre can give to Jake:
The name “Jake Saves Fund” is the first one that came to our mind but can be changed as desired by you.
Depending on affordability and any other factor this offer will be renewed on year to year basis.
Regards.
Dr.Sibia

I would like to thank Dr. Sibia and everyone from the Sibia Medical Centre for their continuing care and generosity. I hope that some day soon I can help to be instrumental in helping to bring this technology to the west as in continues to improve and treatment becomes more successful. Thank you Dr. Sibia and Sibia Medical Centre

Wednesday Jan 27 10:27 pm

We continue to wait as Jake continues to decline. It is very hard for me to be in his room for more than a few minutes. I do not know if I am meant to watch his last breaths. In some ways that seems wrong so I come in and tell him I love him throughout the course of the day. I have told him again and again that it is ok to go. I have finally gathered the collection of pictures I will use for the memorial video. This in and of itself was a very difficult task. Marci has been exemplary in setting up the arrangements that will occur when this is over. It is nice that at least in all of this Marci and I have come to know that even though we have difficulties as a couple, we succeed very well when it comes to getting things done. We work as a well oiled team with each of us doing the things we do best. This tragedy has also helped us to get past the emotional pain of the breakup and function as friends both wanting the other to succeed and do well. Our focus is on what matters, our children and we will use that as our strength to survive this. I believe there are only two ways one can move, forward towards survival or back into a hole. At times the hole seems to be an easier way to go but our ultimate responsibility to our kids and to Jakes memory will prevent that from ever happening. All we want to do is make Jake proud and we will do that by showing him that we can be as strong as he has been both in continuing as parents and human beings. We will never get over this and will try and continue to live full lives all the while anticipating the day in the future when it will be our turn to be re-united with all our loved ones.

A matter of time 4:29 Am Jan 06

It appears to be only a matter of time now. Last night I watched the movie that always signified Jake and I "Hook" with Jake. For me it is the ultimate father and son movie and I have never been able to get through it all without crying tears of joy. My favorite part and also the part where I would turn to Jake each time we watched it is when Peter flies up to Jack (This is the first moment I actually realize how close the name Jack is to Jake) and says:
"I finally found my happy thought...Do you know what it was?...It was you!"
What is very sad for me now is that it appears that Jake is hanging on simply because he wants to live so badly. He loves life more than anyone I have ever known. He had said lately to a friend that he is tired of living this way but that he loves life and to smell, hear and feel it. We have told him that his job is done here and that we are ready whenever he is. We have told him all we need to tell over and over and encouraged him to not hold on for us. It is a double edge sword. We spent a lot of time and energy in the last two years encouraging him to fight and I believe he just does not want to let go yet. I pray that his Grandfather, Grandmother, Great Grandfathers and Grandmothers who have all passed and Ron Jackson his dear friend and guitar teacher who also surprisingly passed last year somehow read this and encourage him to join them. That is unless some miracle is going to happen.

Thanks for all the support

The comments on this blog continue to increase daily. We appreciate all of them. I should point out however that I never have been in this alone. I have had help from Marci, my children and both of our extended families and friends. I am not so much the "hero" that everyone seems to make me out to be. I was constantly supported by all in my life and this quest. This and my work flexibility has given me the opportunity to be with Jake as much as possible which was a gift for me. The fact that I write the blog might indicate less involvement from others but they simply choose not to write about it. For me, somehow writing this blog makes me feel better

Monday January 5th 9:30pm

Jake alive and sleeping peacefully. People continue to visit from everywhere. I have begun to try to put my feelings and thoughts into a video for myself family and friends. I believe I can do it but when I started to look at pictures I remembered a boy who had no cancer 2 years ago. I was shocked at his absolute beauty and comical poses. I have not seen that Jake for over 2 years. I had gotten used to the slow decline of his comical ways and the changing of his appearence, still an absolutely gorgous boy but now weary of this journey. The sparkle is still in his eyes and I feel that inside is a man who simply loves life and does not want to die. I have never felt so sad or powerless as I walk through this living nightmare. I will attempt to create a memory for all that will show the many sides of Jake some that only few have seen.

January 4th Evening

Another day. Jake still alive and comfortable. I would say the worst day in my life so far and unfortunately the facts are that without a miracle I will probably have worse. Today we started making final arrangements for Jake. It was a incredibly indescribable task but we have sorted most of the details out. We went with Jakes wishes and what felt right which is coincidentally the same. Jake wants cremation. We will then distribute his ashes among the areas in his town that he liked to frequent, most prominently the beach. We will also have a plauqe or some other type of public memorial that can be displayed in his town. Jake would rather that money spent on him makes us feel better and closer to him. He also would rather have the money benefit the city of Encinitas and/or Carlsbad or the children therein instead of a morturary or cemetary. For us, although we will be giving his ashes to God and returning him to the Earth, we all like the idea of parts of his being remaining in the spaces he frequented. It will be good to know that Jake is so close though so far. We also agree that there will be a certain amount of pleasure in burning the tumors in his head to smithereens.

January 3rd. Evening

We still wait for a miracle. That appears to be all we have now. Jake is on a morphine pump now for pain and cannot swallow. Therefore he is no longer eating. He still is getting some fluids however they are mixed with the morphine. We appear to have begun to run out of time. The sad situation is that both his heart and lungs are that of a 20 year old, the problem lies within the tumors in his brain. Still, as he begins to travel towards a new existence, outwardly I look at a beautiful human being and find myself again without answers. Although I have no regrets about the way I handled his treatment it is a reality that we learn from experience things to do differently. Time is the key. Early diagnosis, correct first treatment options, all things I now know and with that knowlege would do a little differently. Of course I hope to never have to do this again. Even in the 26 months that we have been fighting things have changed in the battle of this disease. Unfortunately it seems we were unable to stay ahead of the curve as long as we needed to. I remain beside myself that this is happening. I say, he is only 20 and then think of all the children at Rady Childrens Hospital I have seen that will never even reach their first year. That is when I know that Jake will be someplace better. We are all on the road to this place. We are passing through this world. For all of us it is simply a matter of time. For some reason it is necessary for Jake to be there before me. For some reason.

Jan 2nd 2009 Evening

Jake is sleeping peacefully. He had been awake several times during the day. I attribute this partly to removing the Atavan which was originally used as a anti- seizure med but is sedative and replacing it with Dilantin which does not cause sedation. Also he is recovering from the effects of the seizures. Unfortunately however he is beginning to get some headaches so we have been forced to give him some morphine from time to time which puts him back to sleep. Most everyone has been to see and talk privately with him. It is wonderful and torturous to see him doing well as his future seems to becoming clearer. Still when he woke up this evening I asked him if he still wants to fight and he gave me a thumbs up sign. Bob Sands of the Hyperbaric Chambers of America had given Jake a good story about how he is the captain of his ship and he decides when there is too much water to bail out. That is why we have tried to keep Jake pain free and aware at the same time so he can be the captain of his ship and decide what he wants to do. The only question is if and when the water will be far to high for any human. At that time only God can decide. I continually have to remember that Jake is alive today and so are your friends and children. Remember that

Jake Up And Aware This Morning

Jake woke up this morning up and was aware. Extreemely exausted, it is unknown to me exactly where he is or how he is feeling. Recovering from the effects of the seizres is pretty certain but medically where he is is unknown. However, it appears that for the moment he has stepped up one step in the opposite direction from where he was or is heading. This could change in a moment and no one is fooling anyone. However he was aware enough for me to tell him that he is always driving this ship of decision and where it will go. He is on fluids right now and we will see what the day brings.

New Years Day

Jake was more focused today although still unable to talk. He is on anti-convulsant Dilantin to prevent further seizures. He can blink his eyes to indicate his answers so although we know he is still to weak and recovering from the seizures he can communicate. I asked him if he was having headaches and he said yes so we started him on a small amount of morphine to be given when he feels pain. I am hopeful that this will not have to be done continuously because it causes him to go back to sleep and I am not certain that all have said what they would like to say to Jake. Also, I am unclear as to whether Jake wants to continue his fight. He had indicated just before the seizures that he still wanted to fight and I asked him if it was for me or him and he said both. My feelings are mixed, given the seriousness of the disease and Jakes tenacity to survive. The unfortunate reality is that the pain medication will more than likely keep him sedated which will prevent him from eating and directly affect his ability to fight this out however I have to put pain management ahead of everything. Therefore we will hope that the headaches are not continuous so we do not have to keep him sedated and can give him and his friends and family the opportunity to say anything that needs to be said by either Jake or themselves...... I just paused for a moment to check on him during the writing of this blog and I am shocked by the change of having him on the morphine. The indication by the nurse is that he is beginning his transition. I am dissapointed and saddened that it looks like I was unable to stay ahead of the curve of this monsterous disease. If I knew then what I know now, I would have modified my treatment plans but I have no regrets because I always do my honest best and I did do a good job. Unfortunately technology takes time and we are running out of it. I am happy to know that Jake continues to make changes in everyones lives he has touched and will continue to make changes for the better with his attitude and Cytotron. I will be interested to see where we are in 5 years in the battle and proud to know that we took a brave successful stand against it.

At this point, I welcome anyone to leave comments or anything they would like me to tell Jake and I will read it to him.

Restfully Sleeping

As of 7:36 pm, Jake is restfully sleeping. He has been visited by family and friends all day and has given some minor reactions to indicate that he knows what is going on. The future is unclear the present is the present. Jake is alive in this present right now. To look at him one would not even recognize that he is sick. He is alive right now.

In An Instant

Life changes in an instant. Jake had a bad time last night. He started having seizures, 17 gran mal in one evening and was out for the night. Father Brian from St. Johns came over and administered last rites. This morning Jake has started to wake but I expect will be out most of the day at least and I do not know if he will recover to where he was before the seizures or if he has taken another downward plunge. The MRI had revealed some new tumors which is indicative of this type of tumor. I had hoped to get him back to India to treat these but this appears to be getting to be less of a reality each day. It is hard to know the correct thing to do when you are doing it for the first time. Given my experience now, I would have gone to India first for 28 days to use Cytotron before things began to get out of control but it was simply too new and no one knew about it. It has been 4 months with no chemo and considering that he is just now showing significant signs I believe that at a minimum Cytotron stopped and slowed some growth. The problem is that the longer the delay in initial treatment the more these tumors like to spread. I still maintain that I would be on a plane tomorrow if I could and I am happy that at least 3 people have been helped because of hearing about Jake and Cytotron. The future is uncertain and does not look promising however I will still be waiting to hear from Dr. Kumar and his thoughts and continue to keep Jake alive and fighting as long as he wants. Father Brian said it best perhaps when he said it is really up to Jake and God at this point. I have told Jake the following for the last two years when he asked me if he would die:
"Everyone dies Jake. Some people will die today and they do not even know it. But today you are alive and that is what matters. If you spend your life worrying about each day then each day is wasted" As Dr. Sibia has told me, we are all just passing through to something else anyway we just dont know when. Although the end could come today, tomorrow or years from now, I would like all to know they are invited anytime to visit and talk to Jake. Today he is alive and that is what matters.

Hoping

Results from Jakes MRI indicate to me that at minimum more treatment will need to be done with Cytotron. The main tumor Frank Sr. is stable and has not grown in 4 months. Other areas appear to be stable. There are however additional areas that need treatment. The hope is that Jake is still a candidate for more Cytotron and that Dr. Kumar feels that we can get this under control. I have sent the MRI to India electronically and it is being couriered today to Bangalore to Dr. Kumar's team. I hope to have information in the next couple of days. Christmas may slow this down. It has now been 4 months since Jake went off all chemo. On the positive side, it would seem to me that the tumors are not as agressive as a grade IV Glioblastoma as they typically would double in two months in size. However, the challenge seems to be to stop them completely and prevent any new formations. It is difficult to know at what point we are making a difference. For certain, the Hyperbaric Oxygen is helping to keep his energy up and overall health. There is no doubt there. The steroids make him tired, give him heartburn and make it more difficult for him to talk as well as make him weaker but are a necessary evil at this time. Jake at this moment is unable to walk mostly due to weakness and too much bed rest. Today they are delivering a hospital bed which will make it possible for him to sit up. This will hopefully improve the circulation and prevent him from getting weaker. We hope to have him walking again soon. With the combination of the loss of his left arm function and the weakness in his legs, Jake is obviously depressed and does not talk to anyone much. Still he does not complain. We have talked and he still wants to beat this and is ready to go back to India. He appears to feel more sorry for us then himself. We have set up a Tv and a Dvd player in his room along with his laptop and IPod. He sleeps a lot mostly due to boredom and sadness. I would expect that he is sick of hearing the standard positive comments given by all who see him such as "He looks so good" so he does not answer back much. He is however completely aware and still funny. Even though he does not say much he appears to be happy to see anyone who visits.
Jake is a fighter and we will go to the ends of the earth to stop this if it is possible. I feel like we are getting close to the end of a movie and I do not know what the ending will be. One ending seems incomprehensible, the other seems far away. Perhaps a third ending where we go to India once per year to keep things at bay may be realistic, perhaps not. We have always known that we are battling perhaps the worst type of brain tumor known and have always tried to stay ahead of the curve as new technologies develop. I believe in the power of technology and hope. I have tremendous faith in Dr. Kumar and Jakes will power. If Dr. Kumar feels we can help Jake, I will begin the next phase which is trying to get him physically fit for a trip to India, raising money for the trip and planning therapies on the trip to keep swelling down. (Perhaps Oxygen on the flight to help fight the decrease in atmosphere which causes the brain swelling) If Dr. Kumar feels they can help I will add to the blog a request for everyone to reach out to anyone they know to help me find information about keeping edema down and how to make a long distance trip tolerable. I will once again look for the power of many people via the Internet for answers. This worked when we wanted Jake to meet William Shatner. The power of the people is great.
Jake has made a significant change in the world of cancer. Several people have come to India for treatment and have had successes in stopping the growth of their tumors. They have said that they specifically came here because they saw Jake either on television or in the papers. A Google search of Jake Pastel or Cytotron now yields significantly higher results.
It is the Christmas season. The days melt from one day into the other. Most of the time, I do not even know what day it is. I walk blindly through the day not noticing the decorations around me and every once in a while I hear Christmas music while in a store and realize it is the Christmas season. I see the long lines of people purchasing gifts for one another and envy those that have that as a main worry. Health crisis and living in India has grounded me and kept me so aware of what matters and why there is the saying "If you have your health you have everything."

MRI Today

Jake had an MRI today. We pushed it up from Dec 30th to now because we are unsure of why he has seemed to have gotten worse. We will hope to know the results soon and depending upon what they reveal may send them to Dr. Kumar in India. We would ultimately hope for no new growth and possible reduction of course but there is the chance of growth in the treated or untreated areas. In this case we will rely on Dr. Kumar and his team to decide if further treatment in India would be a good option. I am walking around back and forth aimlessly not wanting to do much of anything in particular. Cancer sucks.

A Scare

Rollercoaster
Jake took a dive beginning Wednesday afternoon and throughout Thursday until Friday morning when he became awake and alert again. I was not sure if this was the end. It happened so fast. I had been reducing his steroids over the course of the last 2 weeks due to the side effects that bother him so much and had him off of them completely for about a week, relying soley upon the Hyperbaric Chamber which makes him feel so much better. He was doing just fine for an additional week on nothing. I guess he is not ready to be off of everything yet. With Dexamethasone, it seems that the side effects can almost be as bad as the good effects but I have to keep him on something until his edema is gone. We moved his MRI up from the 30th to this Sunday the 19th exactly one month from the last one to see how he is really doing. There are a lot of potential areas in his head that may need more direct treatment. Even with Cytotron you have to select primary targets. We initially targeted the largest tumor and the last 7 days the secondary tumor. There may be more work to be done in India for whatever may be remaining and we both want to go if he is travel worthy. We will know more probably by Monday or Tuesday after the MRI. Although Jake had a miserable time yesterday and I could visibly see the despair and tears in his eyes, still no complaining or signs of giving up. Barely able to stand without all my help and in a different world yesterday, he patted me on the back while I was holding him up as if to tell me "You are doing a good job" Last night and into the morning he lay in almost the exact same position for hours. Many times I was not sure if he was breathing. Then at about 3:30 am I heard a big sigh. I said "Jake you ok?" and he said "Yes, how are you?" He is alert and back in the game and I will be more careful about his meds. Sometimes you have to push the envelope to really know what is going on. I believe that is why he is still here. I will be trying another type of anti-edema drug tomorrow and see how he does. We will also continue the Hyperbaric Chamber which I cannot say enough good things about. Special mention goes out to Marcus "Felix Leiter" Allyn and Pam Vann for the hours of conversation yesterday or I should say my talking and their listening. Also my Mom who has come to visit and become the "Laundry Queen" again after a 30 year hiatus.
Apparently it is Christmas time in the world. It all seems to be going on but I have not really noticed it. Life and India has taught me and reinforced what matters. Kiss and hug your kids for me today whether they like it or not. Tell them you love them even if you never have. If you are a Dad who never quite felt good about it or embarrased because that is not how you were brought up, do it anyway. I taught my Dad to do it. I think he actually likes it. Today December 19th is the first annual "Tell Your Kids And Friends You Love Them Day" There is no question in Jakes mind how much we love him and no question in our other kids minds either. In a world that is out of our control, you have control over this. If you don't have kids tell someone you love how much you care. Sit them down and spend a moment, look them straight into their eyes and spend a few minutes letting them know. Do it for Dan. This is the only Christmas present I want this year and every year. I have officially created this special day.

Jake Getting Tanked

The tank on the right is the Hyperbaric Chamber that Jake is in daily. The chamber was designed and Jakes treatment is being overseen by Bob Sands a Hyperbaric veteran of 34 years who is also the person who designed the chamber. The chamber takes Jake down to 2.2 ATM (Atmospheres) for 90 minutes. This gives Jake 14 times the normal amount of oxygen he would normally get without the therapy. The oxygen serves to heal and reduce the edema (swelling) which we believe is causing a majority of Jakes issues. While Jake is in the chamber he has a lot more energy and is a lot more alert. Currently he is still having difficulty walking since he got back from India and caught the bug which landed him in the hospital with dehydration. We are now fighting exhaustion and weakness, with the exhaustion keeping him in bed more which seems to be reducing his muscle strength. On the bright side, no headaches, no vomiting and no seizures which leads me to hope that the tumors are still under control. We will know more after Dec 30th which is his next MRI. I still am hopeful to return to Bangalore for final treatment in January or February depending on his strength and the MRI results.
We were very fortunate to meet Carson Cloyd, a young man fighting leukemia who has done remarkably well with the Hyperbaric treatments. His Dad Roger Cloyd and Wife Kathylyn Ignacio MD have begun to form "Club Carson" which is helping us pay for a huge portion of Jakes hyperbaric treatments.
See the link about Carson:

http://www.cbs8.com/features/healthcast/story.php?id=144226

A Successful Fund Raiser

My brother Jack has helped us and the Jake Pastel Cancer Fund by putting on a benefit which did very well. He rented out the Friemont Movie Theatre in San Louis Obispo for one night to show "A Christmas Story" one of my favorite movies. The evening was a success and the money will be used to help pay for the rest of Jakes Hyperbaric treatments. In addition, the news about Cytotron as a treatment was well received. Special thanks to Burdine Printing of Arroyo Grande UPS Store San Luis Obispo, the Friemont theatre and all who helped make this a success. Below is the flyer we put out about Jake and Cytotron:

http://www.cytotronforcancer.com/cytotron/jakecytotron.pdf

Jake Inching Back An Inch A Day

Every day and with each Hyperbaric treatment (day 5 was today) Jake seems to slowly be coming back to health. I have learned a lot in this trip to India. The next time we go (hopefully no later than February) we will make the trip in two or three days. Also, I will make sure he wears a mask in the airport and plane so he does not come down with anything. Finally, I believe Jake will need to be on some type of maintenance Hyperbaric Oxygen therapy while he is doing Cytotron as he seems to be very sensitive to edema (swelling) All in all, Jake is a little more alert for longer periods of time every day. He has significantly lost strength in his legs and that is starting to come back slowly. Last week he could not walk at all (amazing since he was doing so well in India) Now this week he is walking with assistance and every day just a little bit better. I also learned that I have to be very careful about him getting dehydrated. I think getting sick at the airport which then led to dehydration, the edema caused by the treatment and the 40 hour trip was what took him out. We are not out of the woods yet. This is still quite a battle, Jake is visibly tired of the it and I can tell he is frightened of the outcome. It is hard to be doing so well and then so poorly but that seems to be the battle of cancer and we have to be stronger, more creative and more determined than it is.

First Hyperbaric Treatment

Jake had his first Hyperbaric oxygen treatment today. For this session they decided not to take him to maximum pressure but to see how he did and slowly increase the pressure in subsequent visits. He did fine and stayed up till 9pm tonight. Usually he would be sleeping a lot more. Hopefully this treatment will reduce his swelling (edema) and help to continue to choke off any residual tumors until we return to Bangalore hopefully some time in January.

Hyperbaric Oxygen Treatment For Jake

Jake is still struggling since the 40 hour return from India. He had caught some type of bug and got dehydrated and ended up in the hospital. Although he is recovering a little each day, he is off his feet a lot and has lost considerable muscle tone which makes it hard for him to walk. We have decided to try Hyperbaric Oxygen Treatment at: http://www.sandiegocenterforhyperbarictherapy.com
Dr. Kumar believes that about 4 to 5 days of this therapy will help reduce brain edema (swelling) caused by the large amount of treatment that was necessary to stop Jakes tumors from growing out of control. We hope that the treatment will "kick start" Jake back into recovery and that he will soon be strong enough to finish the last of the treatments at the research center in Bangalore in January.

Dan On The Dave Congalton Radio Show

Listen to Dan and his brother Jack talk about Jake and Cytotron
Click either link:
http://www.cytotronforcancer.com/cytotron/congalton.mp4 (Faster)

http://www.cytotronforcancer.com/cytotron/congalton.mp3 (For Older computers)

A Real Thanksgiving

I have been reluctant to post any new news about Jake until I heard back from the doctors in India concerning the MRI results taken here in the U.S. Jake has experienced significant difficulties since we returned to the U.S. Particullarly extreeme fatigue and weakness after the 40 hour return trip. After 2 trips to the hospital, we have started him on Steroids to reduce swelling in his brain. His symptoms are improving very slowly. The 40 hour trip alone was exhausting.
To watch his difficulties increased our worry and emotions about whether Jake was winning or losing this battle. The growth comparison was taken by Rady Childrens Hospital by comparing the August 20th MRI with the November 19th MRI when we returned. The problem was there were 17 days from August 20th till Sept 6th when we started the first treatment. During this time, no treatment whatsoever was given. So the question became:
How much growth might have happened during the 17 day no treatment phase? I was more interested in how much growth there may have been in the 2.5 month time we were in India and doing the Cytotron treatment. I sent the Rady Childrens MRI to Dr. Kumar for analysis. Below is his reply:

Dear Dan,

I received the CD of Jake’s resent MRI yesterday Afternoon. We sat on it immediately. This is what we have got to say;

The study of November 20, 2008 shows:

Multiple focal lesions within pons, midbrain, left cerebellar hemisphere, right thalamus, lentiform nucleus, corona radiata, centrum semiovale, internal capsule, frontal and parietal periventricular white matter. Hemorrhages are noted within right thalamic and periventricular white matter lesions.

Altered signal changes are also noted within left frontal and parietal periventricular white matter.

Edema is noted adjacent and around the lesions.
Mild midline shift of 2.8mms to the left is noted.

We compared this with the MRI scans of September 6, 2008, October 30, 2008 and November 20, 2008. Dr. Sibia sent all these CDs on different occasions. We don’t have MRI scans taken before this. The resent study though shows very mild increase in the size of all lesions, but not significant for a GBM considering the period involved between September and November (GBM has a 3 month tumor doubling period). All the lesions existed in the first MRI and the last, and there are no new lesion(s) after Cytotron treatment was started. There is perilesional edema, mass effect in the form of effacement of adjacent sulci and a mild compression of right lateral ventricle thus a mild midline shift. The Edema is around the lesions and not global.

I think we gave too much of RF and too fast, though there are no problems with such exposures but causes perilesional edema as a reaction depending on how differentiated the tumor cells (undifferentiated – more edema). This is why we give a break between exposures and I was reluctant for the third exposure.

Jake has to be immediately put on anti-edema measures. He should be fine with this and give it enough time to settle down, atleast 2 to3 weeks. When he is fit to travel he can come to Bangalore, where we will target each of the lesions.

If his edema is controlled, Jake will be as he was when he was taking Cytotron in India as he has more of pressure effects on his brain than tumor effects. A little more fight and we will make it.

We have won the battle, now we need to win the war.

Thanks and Regards
Kumar

So after an exhaustive emotional day wondering if this would be Jakes last Thanksgiving we have been given good news and renewed hope.
Additionally, after Jake has recovered from the edema and is strong again we will travel to Bangalore and we will actually get to meet and talk with Dr. Kumar. I am excited that he will be heading the treatment and look forward to many hours learning more about Cytotron. Information we can bring back to the states to help others.
On February 22nd 2007 Jake was officially diagnosed with Glioblastoma Multiforme Grade IV. Coincidentally this was also the day of my 50th birthday. My goal will be this:
Get to Bangalore, finish treatment and return in time for "Dan's Fabulous 52 Birthday Party" where my gift will be a healthy son.

Jake Feeling Poorly

Jake is on his way soon back to Childrens Hospital. Hopefully just as an outpatient to get him more IV fluids and started on steroids to help with swelling. He has started to have problems again keeping things down. We are hoping against hope that it is swelling from the treatments and not more growth. We have not heard back yet from the Doctors in India but I suspect we will at any time. As I mentioned there is a descrepancy as to the results. There appears to be more growth since the August 20th MRI, not with the main tumor but in other areas. The question in my mind is how much of that occurred in the 16 days of no treatment while we were traveling to India. Given the agressiveness of the disease and that MRI's are done every 28 days it is possible that the growth occured before we started treatment. There are also other obviously frightening possibilities. I would have liked to have had the first day of treatment in India which has a accompanying MRI used as the reference but at Rady apparently they are not able to read the MRI format. So a copy of the new MRI has been sent to India for analysis.
Either way I suspect the treatment will be the same, that of Steroids and fluids.
One thing that seems the consistent is that Frank SR. which was the main target of the therapy appears to have been stopped and reducing in size. In a worst case scenario, I will hope that if there are new problems that we will have an option to go directly to the research center in Bangalore for more treatment but we will not know anything until the MRI is analysed by Dr. Kumar.
I should note that I remain absolutely confident in the effectiveness of the Cytotron. There simply remains question as to whether we need more treatment and if it would be effective in this case. Even though this technology is in it's infancy I bet all I know on it as a therapy and eventual cure for many. It is difficult when anything trying to treat this disease is so new and cutting edge. Time and experience will show that I am correct about this. Cytotron will continue to help others I hope it can continue to help Jacob.

On The Radio Today At 4pm Pacific Time

Listen to Dan talk about India, Cytotron and Jake today via the internet at 4pm

http://www.920kvec.com/

Jake at home at last!

Jake checked out of the hospital Friday evening at 9:30pm and we got him home and to sleep. Each day he wakes he seems to get a little more coherent and stronger for longer periods of time. I believe he will be recovering from the 40 hour trip and the jet lag brought on by the 13.5 hour time difference within about 1.5 weeks. He still has had no headaches but a small fever from time to time. His legs are getting stronger slowly. We are hoping to hear from Dr. Kumar and his team of radiologists soon

Walking The Halls Again

Jake is still at Childrens Hospital but will most likely be discharged tomorrow. He came in because he had a fever and was having difficulty keeping things down. He was also very lethargic.
His fever broke today and he has been doing better. An MRI was done yesterday and there are some concerns by the radiologists here at the hospital. I have forwarded the MRI and the radiologist report to Dr. Kumar in India to get His opinion.
Apparently radiologists not trained in reading MRI's taken after Cytotron might interpret the MRI differently . Therfore we will wait for a response from Dr. Kumar and his team and then decide what seems the most accurate and decide what we would next if something else needs to be done. So it is 8:44 pm and I am walking down the hospital corridor in my stocking feet, passing other parents who are doing the same thing. Strange to be walking the same halls I walked just about 2 years ago when Jake was first diagnosed

Jet Lag, Fever and Chocolate

Judging by the fact that it is 3am at the time of this post, I have still not gotten caught up on the jet lag from the return trip.
Jake has been feeling pretty low since we got home. On the trip from LA to San Diego he started feeling bad and ended up having some type of virus or flu. He has had a rough couple of days. His fever seems to be gone now but I think we will take him to Childrens Hospital in the morning for IV fluids to get him charged back up. Not really the return I was picturing when I thought of us walking through the airport like a couple of suave world travelers in sun glasses but that is life, throwing curves. Guess you have to catch them and throw them back. We received tons of chocolate when we got back along with greetings from many friends. Yesterday we received a special package from Dr. Kumar and Dr. Sibia. It was a chocolate cake for Jakes birthday with a nice note attached. Those guys continually impress me. I finally got out to get a cel charger and returned phone calls so we are slowly getting back in step. I am hoping that the IV fluids will be just what Jake needs to kick start him back in business and we can start to work on his physical therapy. The trip did have some negative effects on his overall strength but time and physical therapy will solve that.

Answers From Dr. Kumar Inventor of Cytotron

This blog will continue to follow Jakes progress through physical therapy and rehabilitation while also following the successes of other patients and trying to give more information about this new promising treatment. Below is a FAQ written by Dr. RV Kumar inventor of the Cytotron. It is quite informative and explains Cytotron technology as it is being used regeneratively to promote cartilage growth in knees as an alternative to knee replacement and degeneratively to stop cancer.

Click on the link:

http://www.intelligentsolutions.tv/cytotron/answersfromdrkumar.pdf

First Day Back

Jake slept from yesterday at 1pm till 7am the following morning. He woke up, showered, ate and went back to sleep. In the afternoon we had a birthday/welcome back party. He was much more aware then he was in India. As Dr. Kumar had suspected, some of his tiredness was due to home sickness. He is asleep again now. I am noticing some automatic movement in his left foot when I try to stretch his ankle. It seems to try and fight back causing the ankle to shake and give. This was not happening a week ago. It all seems like good signs. Additionally another patient has started Cytotron after having heard about Jake in the paper and after just a few treatments is feeling better. My cel phone charger broke and I have been unable to get a charger yet but should be back in action tomorrow. Till then, I have had no cel phone in case people have called. We will be going back to San Diego tomorrow afternoon if Jake is ready.

The Jones Boys Are Back In Town!

Jake and I arrived at about 11:30 am today on Jakes Birthday! We were up a total of about 40 hours so Jake is sleeping. We are safe, no problems, and I saw a car use a turn signal for the first time in 2.5 months! My Father picked me up and as we strolled with the bags and the crosswalk light turned green, I instinctively stopped and wanted to grab him and say "Be careful! You can't just walk into the street like that! More updates after I sleep. Good night

Jake & Dan In The News

Click on the link:
http://www.intelligentsolutions.tv/india/penbook.pdf

The Doctors Credo

As I have seen the continued success of Jake and the other two patients that were receiving treatment at the same time for other cancers. It became even clearer how much this technology can change the world. Being that it will probably take some time for it to come to the U.S. I suspect that we will see an increasing amount of people coming to India for treatment. I mentioned to Dr. Sibia that he will probably have no lack of business and that I would not be surprised if he soon needs a second Cytotron machine to handle all of the work. He indicated to me once again that he is only happy that he will be able to help others. My comment of increased business was meant as an statement of him being able to help more people and not from a financial standpoint. After we talked about this, Mrs. Sibia brought in a plaque and translated it for me. It is their credo, their way of life and mission statement. Below is the translation:

O God, in reality it is the strangest of circumstances that my livelihood is dependent on the ailments of others. Still it is my good luck that you have provided me the golden opportunity to relieve them of their sorrows and you have also provided me the capability to fulfill this responsibility.

O God give me grant me such strength that I can carry out this responsibility with honesty and love.

Actually you are the one who removes the sorrows of all and you are the true treasure of happiness. I am just the means.

O God keep you hand of blessing and sympathy on the heads of my patients.

Graduation Day

We had Jakes last day of treatment yesterday. I woke up at 4am this morning and went over to check my email on the computer. As I started to work on the computer, I realized that I was too tired. What usually woke me up was the stress of the things going on in my life. This morning a lot of the stress was gone. I went back to bed and watched Jake fast asleep, but this time I had an overall calmness like I had when Jake was a baby sleeping instead of worry about his health and survival. Last night after his last treatment, Dr. Sibia and his staff threw a small going away party for Jake and I to celebrate his success and his upcoming birthday. They ordered Chinese food and pizza and we sat in Dr. Sibia's office and partied. We took pictures of the staff and pictures of Jake and I with Dr. Sibia and his wife Harpreet. At the end of the party, Dr. Sibia went over to Jake, hugged him and said "It has been a pleasure having you as a patient. You are a new man now and I will look forward to you coming back to visit India and playing your guitar for me."
I said goodbye to the Dr. and his wife realizing that I have made new life long friends and that this really is not goodbye. Still when it came to the time where I wanted to say thanks, the man who has written blogs and emails for nearly 2 years was speechless. How do I put into words or a sentence a thank you for saving my sons life? Words simply cannot express, so I will try to use the knowlege and experience I have gained in India to try and help others in the world. In the end I believe this is my intended mission in life. As I struggled to find answers over the last two years as to why murderers and rapists are healthy while a good child like Jake with a promising future becomes ill I truly believe that it is Jakes kind nature and positive outlook that will be a driving force in promoting a therapy to help bring an end to suffering and death caused by Cancer. I believe we were chosen for this and although I want nothing more than for Jake to lead a normal life and be a happy young man doing the things young people do, we both have a warm feeling that already Jake has helped two people that have started treatment specifically because of his story and success. Jake has accomplished what his mission was when his psycologist asked him "Why are you going to India" and he replied "Because if it works I can perhaps help save others"

Looking Back...Yet again

The last day of treatment is today at 4pm. Then we say goodbye to our friends at the Sibia Medical Centre and take one day to rest and pack, and then begin the journey home on Friday. Jake and I should arrive in Los Angeles at 9:35 at LAX.

As this week has progressed I have each day sat in the office of my friends the Sibia's. I have said hello to all of the people at the clinic from the technicians, to the nurses to the guards. I have many more friends than I did before I arrived. I have a second family. This week has reminded me of the final week of "The Tonight Show" with Johnny Carson (didn't see that coming did you?) Each day closer to Johnny's last appearance on the show. As would be expected, both myself and the Sibia's have been reminicing about the chain of events that brought Jake and I here, and the times and talks we have had in the last 2.5 months. What has come up more than once is the decision to take a chance and come here and the way both Jake and I were strong enough to be away from all family because that is what we needed to do. Invariably the name William Shatner has come up more than once as kind of a motivating factor perhaps for me even more than Jake. During the course of this adventure, from the begining, Jake would quote lines from movies such as "Star Trek Generations" "I take it situation is grim and the odds are against us...Sounds Like Fun!" as one example. Almost each day in India, at about 3pm, after Jake had a nap, we would have "The Bingo Hour" This consisted of eating a bag of "Bingo" potato chips while laying on the bed together watching an episode of "Star Trek" Jake and I would say, "Boy, we think we have it rough, look at what he has do deal with at his job!" The episodes were new to both of us as we mostly had experience with the films only.
This blog began and will continue, eventually under a different title, as we add success stories from Jake and others. During the first 1.5 years of Jakes treatment I made all of my correspondences in the form of group emails. I did not know what a blog was (apparently according to Dr. Kim it is a "Web Log"). Because of this, our complete story is known more to just our immediate friends and family until the blog began on Sept 2nd. There have been magic moments even during that time that were recorded on email. I would like to post 2 email entries here that were turning points for me. They came at a time when I was unsure of what to do next and Jakes future appeared very grim. The second is how an email picked me up emotionally nd kept me on track. The third was written directly to someone else yesterday by Dr. Sibia.

Letter 1
In a message dated 8/22/2008 9:51:58 A.M. Pacific Daylight Time, dan@intelligentsolutions.tv writes:
I have not lost my mind. I just like movies and they have been a huge inspiration all my life. My kids seemed to have followed in my suit enjoying movies instead of sports. Didn't seem to affect them negatively let's face it Alex was crowned Homecoming King this year in a school known for football. In that vein, movies, and movie quotes help drive my life and I am certain they help drive and teach Jake. During the course of the last 1.5 years Jake and I have jokingly used actors and characters from movies to help cope with the type of attitude we need to maintain. Key in this role has been Captain James T. Kirk aka William Shatner and Jake has said on more than one ocasion how cool it would be to meet him. Although I realize this is a near impossible request, this email goes out to so many who know so many that I thought I would put it out there that if anyone has any connection with Mr. Shatner, we would love to arrange even a phone call from him to Jake. I think it would be a fantastic memory and motivator. I have not told Jake about this idea as it would be a wonderful surprise and I don't even expect that there is a possibility that it could happen but people know people who know other people so you never know. Therefore, I am putting it officially out there. Get me a call with the Shatner man. I really am not losing it. I just believe in the power of many. Thanks, Dan

Letter 2
On Aug 26, 2008, at 1:11 AM, Daniel, L. Pastel wrote:
Sunday was a pretty rough day for me. I began to question everything I
was doing and felt myself going into a panic. I kept thinking, "I can't
believe I am actually going out of the country for up to 2.5 months."
How could I be in this situation? I felt at the end emotionally and wondered how I
could pick myself up and continue the fight. Jake was complaining of a
small headache and feeling kind of out of it and the panic started to
wash over me like a wave from the top of my head to my toes making the
lower half of my body tingle like it was asleep. The same thing happened
when Jake was first diagnosed and again last week when our doctor caught
me in the hall to let me know the MRI results were in and things had
changed for the worse. I felt like Dr. McCoy in the Star Trek episode "Spocks Brain"
where he performs reverse brain surgery to put Spocks brain back in his
head after it had been stolen by aliens. Suddenly Dr. McCoy begins to
panic and says "How could I ever think that I could do this? I was
starting to question the validity of everything I was doing and finding
no answers or choices to choose from.

The next day, we went for our vaccinations. We were sitting in the
office after the shots, waiting for possible side effects when I got a call from
my brother Dale (Angel Tay) informing me that my sister Pam, had been
successful in contacting William Shatner and he would be talking to Jake
within the hour. I was ecstatic! My depression left and I found myself
excited and hopeful again. I knew that Mr. Shatner would have good words
to say which would help motivate all of us to do the things we needed to
do. Mr. Shatner called and spoke to Jake. We listened on the
speakerphone as Mr. Shatner told Jake that he was going to leave the
states to get better and he would "WILL" himself better. He said "Jacob
do you hear me, you will WILL youself better!" He continued: "And when
you are better and you get back, I will take you to a horse show. Just
you and me, what do you think?"

The road ahead is dark, winding, and unclear. It is difficult to know
whether we will drive ourselves directly in to a wall or find an
opening, where the sun shines and life is reborn.

As Captain Kirk quotes in The Wrath Of Khan, "There are always
possibilities"

Today confirmed what I already knew. People can get things done! Just a
few days ago, I sent out the "Wacky Email" hoping for a moment to
contact William Shatner to launch Jake and I on our way. Within a few
days, the power of people and the internet made that happen. People make
things happen! People like the doctors, nurses, social workers and
pschyologists at Rady Childrens Hospital. People like my brother "Angel
Tay" whose only concern is for our well being. People like my sister Pam
who set up the Jake Pastel Cancer Fund and got the meeting with Mr.
Shatner. People like my parents who help out financially, with a joke or
chocolate. Nieces like Kaitlin that setup websites to sell products for
Jakes benefit. Benefit poker tournaments in Los Angeles put on by my
nephew. All my close friends, and people I have never met who have
brought food, caring, a hug, anything they could because they want to
help. People are so much better than we realize. It is a shame and a
blessing that sometimes realize this only after the going gets rough. There are
hundreds of hands holding my family up while we walk across this fire,
this hell which is a brain tumor. I travel with Jake Sept 3rd, one week
from Wednesday to another country on a hope. We are never alone. The
helping hands of all my friends and family reach out like the web that
is the internet and help hold me and Jake up. We are never really ever
alone.

A long while ago, Jake had given a name to his tumor....Frank. Now Frank
must die.

Finally, Letter 3 from Dr. Sibia
Subject: Captain who steered the ship towards health and recovery in the book "Saving Jake - Hope for Cancer"
Dear William Shatner,
Jake is here for treatment of his brain tumor with Cytotron and we are satisfied with the follow up MRI result. The will power of Jake and the determination of Daniel his father are exceptional specially when it comes to cancer – even the word spells doom and defeat.
Your encouraging words to Jake have inspired him and Daniel beyond whatever you may imagine. Will power, optimism and the right attitude go a long way in any treatment and I must appreciate and thank you for what you have done for Jake. The credit of his improvement at least partially goes to you or he may never have been here.
Cytotron treatment for cancer and arthritis is still in its infancy and it holds promise for millions suffering from the ailments. When future generations read the history of Cytotron your contribution cannot be ignored. You will also be the Captain who steered the ship towards health and recovery in Daniel’s forthcoming book “Saving Jake – Hope for Cancer”
I take this opportunity to invite you to Sibia Medical Centre in Ludhiana that is located in north India as my personal guest. I know you are busy but then if you "WILL" it to happen – as you said to Jake before he left you will be here one day.
Regards.
Dr.Sibia

Cytotron 3.... Cancer 0!!!

I am just beside myself! We received the news of Angies MRI today.... NO GROWTH! Let's really examine what this means:
Angie had an MRI August 8th before she decided to come to the Sibia Medical clinic. At that time the colon tumor was the size of an egg and she had 5 tumors the size of peas in her liver. She was having to drain off up to 9 litres of ascites fluid which is a by-product of the cancer out of her abdomen regularly. By the time she got to Sibia Medical Centre on Oct 15th and had an MRI, the tumor had spread to 1/3 of her abdomen! Now 28 days later no growth whatsoever and the amount of fluid being drained has significantly decreased, another good sign. We must remember that the Cytotron causes out of control cancer cells to revert to normal cells and die off as normal cells or become stagnant. It is not the type of treatment that shows initial reduction in size. This happens over time. If you do the math and look at the growth from August 8th to October 5th which is essentially 2 months, one would at least expect half that growth from October 15th to today 28 days later however, no growth whatsoever!
I have been holding back but these continued amazing results against cancers that are so agressive demands the following editorial comment:
I must be state my conclusions..
In my opinion and with what I have seen happen now in Jacob and two other patients, plus my 30 years of experience in electronics and a understanding of this technology, Cytotron should be considered as the FIRST line of defense in any cancer in which the professionals who offer this therapy feel it would apply. Cytotron is not effective in some types of tumors but I will say that if I had any form of cancer, threat of possible cancer either malignant or benign, I would be on the phone to one of the centers (in my case the Sibia Medical Centre as I have had such a good experience) faster than you can say Cytotron and on a plane the next day if required. Of course that is just my opinion based on my experience and facts.

Captains Log supplemental Part 2

I must really be in contact with my feminine side. I am certainly not outwardly the most macho man I know. (That distinction is left to my good friend George Foote)
I find myself constantly being moved emotionally by my experience of visiting here.
Today it was in the form of a comment by Dr. Harpreet Sibia, the wife of Dr. Sibia

Words form Vedas - "Fear fearful things till no fearful things do appear, when dangers must be met - fight and forget your fears."

Visiting with the Sibia's for coffee each day has been a highlight of my time spent here. I have learned things I cannot easily explain. They have a way of putting things that instantly make sense.

Captains Log...supplemental

Had breakfast this morning with Angie and Norman her cousin. Angie as you may recall is the patient from Scotland who is here attempting to stop the cancer that started in her colon and spread to her liver. For whatever reason, they were not able to get the drug Avastin for her colon cancer, a drug which has shown significant help for that disease. Jake sat with us for the first time in a few days. Apparently the 17 hours of sleep was just what he needed and although still tired, I was able to convince him that we should try for breakfast. We sat at the table with Angie. Angie will finish her first 28 day treatment tomorrow followed by the MRI which will determine if she will stay for the second 28 days or go on to try and find another treatment. Sitting across from Angie I can almost feel the worry, hope, and fear that she is going through the day before the big day. It is something that you have to experience first or in my case second hand to understand. When so many have told me that they cannot begin to understand what we are going through, they are correct. You have to live it and I feel sad for anyone that does. There was nothing I could say, I would have liked to say that everything would be alright but that is such an unknown. No treatment is foolproof and usually more difficult the longer the cancer has been around. I said "Don't worry till you have something to worry about" Another useless comment, an attempt to try and make everything well when the situation is out of your hands and only time will give the answer. I told her that you will all help me by saying prayers tonight for good results for Angie, Mother and Wife.

Anti-Angiogenesis Treatment Day 4

It is Sunday night about 10:48 pm and Jake is in the shower feeling better. The last two nights were fairly rough. Apparently it was really a lot to try and do 2 treatments one hour each per day and Jake was getting much too tired. So Dr. Kumar modified his treatment to 1 per day for 1.5 hours which should yield the same results. Today Jake slept for 17 hours! Now he appears to be more himself. We have 3 more days of treatment, then one day of rest before the trip back home begins. On another note, you may have read in an earlier blog entry ("A Nice Story"), about the man and his wife who came over to do the Cytotron treatment specifically because they read about Jake in the paper. The woman who is paralyzed from the waist down and unable to move her arm. Yesterday, after 16 days of Cytotron therapy she started moving her arm again! Today, she has begun to get feeling back in her legs. When her husband told us this I was overcome with the nicest feeling I have ever had. That of helping change someones life for the better. It re-confirms my mission which is to help bring news of this technology to the world.
I have been organizing the emails over the past two years that I have sent out concerning Jakes care. I am using them as a reference while I write my book "Saving Jake". I have to admit, it has been a pretty intense 2 years! Looking at the emails now, it seems difficult to believe we have gone through all of that, I hope not to have to do that again. Only time will tell. I would expect that Jake will sleep almost constantly for about 2 weeks when he gets home to his own bed and his dog. I think we will really start to see the Jake, off chemo that we have not seen since almost two years ago when he walked into my office one afternoon and said "Dad, I think I have Carpal Tunnel" At the time I said "Shut up Jake, you don't have Carpal Tunnel". What a hard way to be right!

Fire Full Phasers Mr. Sulu! ... Oh, And How About Another Video!

Jake finished his second day of the new treatment designed specifically to destroy the remaining attempts by Frank Jr to Klingon... I mean cling-on by concentrating all Cytotron guns into a narrow field with the software set towards anti-angiogenesis. I have changed our plane reservations for Nov 15th, the last time I believe I will have to change them, and Jake and I should arrive in Los Angeles at 9:30 am the day of his 20th birthday. This birthday as the previous one, a celebration of beating the odds and not believing in a "No win scenario"
(James T. Kirk from "Wrath of Khan")
I have been told by some that I refuse to see reality while still others have said that I refuse to take no for an answer. I believe I am somewhere in between.
In the realm of cancer, success must be measured one day at a time. It is a waste to dwell on anything but today and hope and believe there will be many tomorrows. Tomorrows that in time bring more advances that help guarantee destruction of cancer from our lives. As a parent of a child that has had cancer we must take each day one day at a time and be happy for good results. It is not feasable to do daily MRI's, therefore we will go through our every 6 week stress that is the scheduled time between each MRI. As the day of the test comes nearer, we will find ourselves more nervous than normal always hoping for the best.
HOWEVER, physical improvement is always a good sign of recovery and success especially with a brain tumor. Therefore, I give you today's video taken about 2 weeks since the last video showing Jakes walking improvement.
Click on the link:
http://www.intelligentsolutions.tv/video/jakerecovery3.wmv

Detailed MRI Results

The following is the text sent to me from Dr. Sibia after talking to Dr. Kumar. Dr. Kumar's team of radiologists viewed and discussed Jakes tumors at length:
Dear Daniel,
As I informed you late last night the details of my discussion with Dr.Kumar are as below:
----------------------------------------------------------------------------------------------
After downloading the MRI from your site the CD was taken to the radiologists. Four eminent radiologists discussed all the possibilities for about four hours and concluded as follows:
Frank Sr (I am using your terms to make things easier) seems to have no activity.
Frank Jr is trying to extent its tentacles by angiogenesis but an equal amount of destruction of the angiogenesis is seen. The signals indicated by the contrast uptake are not of an aggressive tumor.
Both Frank Sr and Frank Jr have no appreciable change in size. There is some enhanced signal around Frank Jr with suspected angiogenesis but both Frank Sr and Frank Jr seem to be stable (as if stunned).
-------------------------------------------------------------------------------------------------
Suggested action (keeping in mind the distance between USA and India) :
Cytotron therapy to be done twice a day with a gap of not less than 3 hours, each session being of one hour to be done for 7 days. The target will be the angiogenesis with the aim of denting the tumor further and starve the Frank Jr from nutrition by cutting off the nutrition channels to the tumor.
I am emailing a copy of this to Dr.Kumar – so that he can add, correct or comment if required.
Regards.
Dr.Sibia
It is good for me to know that these last 7 days of treatment are being done as a fail safe considering that we live so far away and that we are already here. The doctors realize that it is best to play it extra safe since we cannot just come back that easily in the event more treatment was needed. I believe that they feel good enough about the success of the therapy that if I was a resident of India they would stop now but are being extra careful because of he distance.
Now, another video:
This video was taken on October 25th 2008 after we all began to notice that Jake was walking better. We decided it would be a good idea to have an assessment. We noticed improved walking, and sensitivity in his foot and legs. We believe that now the leg and foot are starting to work again. There is still a lack of feeling in them but there is some intermittent itching. His gait is improvedt. It is apparent that his left leg has significant weakness from not being used and a tightness in the muscles. These are affecting his gait but we still see a improvement. Since this video was taken 10 days ago, his gait continues to improve.
Click on the link:
http://www.intelligentsolutions.tv/video/jakerecovery.wmv

We Came, We Saw, We KICKED FRANKS A@#!!!

Here is the blog we have been waiting for! The results of the 2nd MRI show that Frank Sr. is dying and will be evacuating from Hotel Jake. Frank Jr. still barely trying to hang on is losing the battle. The main Thalmic tumor (Frank SR.) has again had no growth and according to the radiologists in Bangalore has been handled. Frank Jr. has a small amount of angiogenesis (blood vessel formation) along with Hemmoraging. Dr. Kumar has indicated that if we lived in India we would not continue on any more treatment because it is not really a concern but since we live so far away we will do 7 more days of treatment focused specifically on Frank Jr. twice a day for one hour, no more than 3 hours apart. That should anihilate any chance of re-growth.
I will go into details with specific answers to some questions I have sent Dr. Kumar as soon as I receive an email I have sent him. Till then perhaps the most important thing to know is that we have found a no side effect treatment against one of the worst types of cancers that is showing to be very effective. Even if in the future there was re-growth somewhere else, we could go back and do more treatment.
I have gone into more detail in the following video...
Click on the link...
http://www.intelligentsolutions.tv/video/secondmricommentary.wmv

Jake Feeling Better

Jake is feeling much better today. His temperature is down, his short term memory is almost completely returned if not completely returned. He no longer asks questions over and over again. He has intermittent itching on his left leg, foot, arm and hand. His headaches are gone. His color is good. He is still tired but after sleeping for almost an entire day, he is alert and making jokes, speaking up rather than being so quiet. I think he will need 1 or two more days of rest, then we may see the Jake we have not seen in a couple of years. Illness seems to affect him more than normal, making him more listless than I feel is normal but every day he seems to get better so we will see what the MRI says. We will hope to know the information in the next couple of days and find out if we are staying longer or coming home.



I on the other hand am now fighting getting Jakes cold, but even with tons of
vitamin C am starting to feel like this:

My Hat's Off To Jake

" Little boy blue, come blow your horn
The sheep's in the meadow, the cow's in the... well in this case the cows are in the street!
Where is that boy who looks after the sheep?
In the Hotel Fortune Klassik fast asleep"
I have to take my hat off to Jake. He deserves a big round of applause. When he was little and taking a nap neither him nor anyone had any idea he would be here in India trying to save his own life. Since November of 2006 when his hand started hurting and we thought it was just sore. Through a needle biopsy where a hole was drilled into his skull and a needle inserted into his brain. To radiation where all his hair fell out, 35 pound weight gain on steroids, blood clots in his leg, rashes on his feet, from constipation to nausea. To finishing his senior year with a private tutor at home and missing most of the senior activities while he was in a wheel chair. To 20 or more drugs daily. To chemotherapy every 2 weeks and sickness from the chemotherapy 10 days out of those 2 weeks. To journeying away from his home, family and dog now for 2 months and after 2 months of treatment sick as a dog with a cold one day after getting over a fever. Jake, unstoppable, fell asleep today while on his laptop learning about music on the internet. Not once has he lost his temper or his stride. Not once has he complained about his situation in anymore than a passing comment usually in the form of a joke. Not once has he ever even thought about giving up. And now, while we await new information as to whether we go home or continue treatment. Even now, feeling as sick as he is with this cold, he is still making jokes in between sleeping. Jake is a testimony of what a human can do when you decide not to say no and fight against the odds. I hope that to all who know him and have known him he is a positive influence to all. I hope he shows you as he has shown me that this is how you get through problems. You make your future regardless of your past and against any and all odds. If he has shown you that then maybe we find some small reasoning behind why bad things happen to good people.

The following message was brought to you by a very proud father.

Some Results, Some To Come

The MRI has been analyzed by Dr. Bakshi at the hospital and we have the following information at this time:

As you may or may not know Jake has more than one tumor. The main Thalmic tumor named Frank Sr. and a newer tumor called Frank Jr.

Frank still shows no growth after no chemo or any treatment besides Cytotron since August 20th. The two previous MRI's done in the US had some growth so the Cytotron appears to have halted Frank Sr. Jake has had improved walking and some itching in his left leg. In my opinion, his walking is significantly improved. He is also getting some itching on his left arm. Again, as Frank Sr. The Thalmic tumor affects these areas we all feel very good that we have stopped it and that hopefully Frank Sr. will check out of the Jake hotel slowly and steadily.

We do not have final results for Frank Jr. which is a tumor located in the occipital lobe near the back of his Jakes head. There is a question as to whether we are seeing some hemmoraging or growth of new blood vessels. The MRI will be reviewed by Dr. Kumar and his team and we should have results in the next couple of days. On a positive note, Jakes headaches are still gone as is the "knotty' feeling in the Frank Jr. location. From a symptom standpoint it would appear that the results for Frank Jr. will be encouraging but we really will not contemplate yet. He still has a loss of peripheral vision on his left eye. Otherwise Jake got over his fever and had one nice day and now is down again with a cold. This poor kid. We finished our last treatment today at least for the time being unless the MRI changes our plans so Jake will be able to spend the next couple of days doing nothing but sleeping if he likes. Also a positive note he has more energy and his memory seems to be getting better every day. Perhaps we just need to get through all the problems so the return trip will be pleasant.

MRI Results Pending

Jake had his MRI this evening. Final results are pending. We will have final readings and hopefully good news some time tomorrow or Sunday. TheMRI must be analyzed by the radiologist Dr. Bakshi and will very possibly be confirmed by Dr. Kumar as he is the inventor of the machine and may be able to see things and effects of the Cytotron not normally noticed by others. I will post results when they are final.

Fever gone, Jake Awake and Teasing Me

Jakes fever broke at about 1am last night. He slept till 2pm today ate, and got back most of his energy and started picking on me again.

A Nice Story

I have a nice story for you. We were in treatment tonight. We had to go late today. While we were waiting for the Cytotron machine to become available we were greeted by a man whose wife was in the machine at the time being treated for a brain tumor that had spread from her lungs. He came over to Jake who was laying with his head on my lap, still wiped out from being sick and said "Jake, I want you to know that the reason I am here is because I read your article in the newspaper. If it was not for you I would not be here. The blog and the press are doing good things to help people. As you know, before we left Jakes psychologist (Yes, when you have cancer everyone in the family has access to free counseling although I think I would rather not have cancer and get a free trip to Las Vegas). Anyway, before Jake left, Anke his pschyologist said:
"Jake, are you going to India because you want to?" "Jake said no, that he was nervous about going there. Then she said "Well, are you going because your Dad wants you to?" This time he laughed and said "No!"
Finally she asked him why he was going. He said "Because if this works, maybe I can help save more people and children"
It is good to see some some potentially good things coming out of all of this.
Sincerely "Proud Father"

Friday Morning Update

Jakes temperature appears to be gone now but he is far too exausted to get up right now. We will tentatively try to make it to the clinic this afternoon for treatment and a MRI following if he is in good enough shape. Otherwise it will be tomorrow. I have moved our flight ahead by two days at this time and will move it again if necessary.

Update on Jake

Jake seems to be doing a little better tonight although he is still tired and has not eaten anything yet. His blood tests came back fine so we are pretty sure it is something he ate or a virus. We may have to delay our return by one or two days depending on how he feels. I will update tomorrow.

Delay in results

Jake felt sick today after breakfast and began complaining of a headache. When we were almost to the clinic he vomited in the cab and we took him to the clinic to be checked. He had a fever and a headache. We gave him Tylenol and liquids. His temperature was 101. His temperature is now 100 and he has been sleeping all day. He has vomited several times during the course of the day and still has a headache. Both Dr. Sibia and Dr. Kumar feel he has come down either with a virus or a abdominal problem perhaps from something he ate. We have had blood tests done and should have results shortly. He seem to be doing better and I suspect that he will be fine by tomorrow. The blood tests will determine whether or not I will take him back to the hotel tonight or stay here. He would be much more comfortable at the hotel. He may not have his Cytotron treatment today but we will see how he is feeling. He certainly will not have his MRI until tomorrow if he is feeling well. Hopefully this will not delay our return but I do not want him to leave if he is feeling very ill. I will use the blog to update everyone during the course of the evening. I do not think there is anything to worry about. The headache is bothersome but as we all know it is very common with flu type symptoms. He has had absolutely no symptoms for about 1 month now so we need to take this as a good sign. One more trip on the roller coaster

2nd MRI Is Tomorrow

Not even sure what to say here. Everything I have said, I have said a hundred times before. We hope for a good MRI tomorrow. I know everyone is joining us in prayers and good thoughts. This is a moment we will go through time and again although this MRI in particular, which will hopefully confirm initial findings from the first MRI is particularly important to all of us. Cancer is frightening, terrifying actually, like a wolf stalking us in the middle of the night on an empty street. We are at that moment of fear, looking around, feeling safe but almost afraid to look and hoping nothing is there. We are hoping for a grand celebration tomorrow, to walk away from that rollercoaster that is cancer even if we always stay in the amusement park close to the ride. I hope that tomorrow I will be elated and for those of you that have seen "Boston Legal", that I can be proud enough at our steadfast research, determination and results that the name of the very next post will be entitled "Danny Crane!" (I told you I would be quoting movies and tv at the beginning of this blog)

Always Learning

I woke up the other day with a thought that was troubling me. Throughout the course of this blog I have tried to be informative while still being entertaining and funny. Those of you that know me realize that is my way and part of the way I cope with stress. However, during the course of our trip, and as I have learned more about the people, I began to question whether all my posts were entertaining and funny to all who view them. I speak specifically about the "Thriller Indian Video" blog and the "Favorite India Video" blog. These blogs were posted early on in our travels before I knew anything about the culture and people of India. I since have grown to understand more of the people, their entertainment styles and culture. For example, I never knew that dance was such a big part of the culture. When I saw the film Drona there was an opening musical number. There were also musical numbers throughout the film. This would be very rare in American film unless the film was classified as a musical.
As we all laugh at ourselves from time to time, I initially found it quite funny to watch the subtitles put on by who ever originally posted these video's. However, as I became more knowlegeable about the people here I realize that these video's while not harmful do nothing to help people in our country to get any kind of an accurate picture of the people here. In fact, it is misleading and could stereotype the culture in our eyes. As I have talked to people here during our stay, they have asked me questions about our country. Many of their ideas about us were not entirely accurate. My point is (and I do have one) as much as we try, it is easy to stereotype and have inaccurate ideas about other people and their cultures if we rely only what we see and hear in the media. This is unfortunate. As I said in a previous post, it would benefit all of us if we actually were able to get to know our neighbors from other countries rather then getting our information from the media and word of mouth. I believe that if everyone was able to travel to these foreign countries and see the people in their everyday lives, and if these people could do the same with us, there would be would be significantly less wars and more peace and harmony. I am keeping the earlier posts as I think it demonstrates how are thinking can change as we get to know people better.

A Night Out In Ludhiana

Tonight we spent the evening with Dr. Sibia's daughter who was visiting home during a break from school. Keeradt is studying to become a doctor like her father and mother. She took us first to a coffee shop where we all had Frappachino style drinks and dark chocolate cake (yes, she found dark chocolate!) The coffee helped wake Jake up so he would last longer. Then we went to a mall in Ludhiana. This mall was significantly better than the first one I visited early on. It was a magnificent mall. Interestingly, these malls are small in length but have 5 floors instead of our normal 3. It was very beautiful. We went up to the food court and tried about 4 different types of Indian dishes, all vegetarian and all delicious. I will say that the spices of Indian food is so flavorful that I could actually become a vegetarian and not notice. Anyway, it was a wonderful evening as we drove down the street comparing brands and stores that are here in Ludhiana and also in the US such as Adiddas, ReeBok, etc and talked to eachother about our different cultures.

The Diwali Festival

Last night we celebrated the Diwali Festival. A festival to celebrate life. I believe it is the biggest and most celebrated of the Indian holidays. Shops close everywhere and decorative lights are set up in most of the shops and buildings. People travel to peoples homes and work with gifts and just to visit. Here is a brief description of Diwali from Wikipedia The holiday varies from town to town: While Deepavali is popularly known as the "festival of lights", a more appropriate significance is "the new year of luck and wealth".Central to Hindu philosophy is the assertion that there is something beyond the physical body and mind which is pure, infinite, and eternal, called the Atman. Just as we celebrate the birth of our physical being, Deepavali is the celebration of this Inner Light, in particular the knowing of which outshines all darkness (removes all obstacles and dispels all ignorance), awakening the individual to one's true nature, not as the body, but as the unchanging, infinite, immanent and transcendent reality. With the realization of the Atman comes universal compassion, love, and the awareness of the oneness of all things (higher knowledge). This brings Ananda (Inner Joy or Peace).Diwali celebrates this through festive fireworks, lights, flowers, sharing of sweets, and worship. While the story behind Deepavali varies from region to region, the essence is the same - to rejoice in the Inner Light (Atman) or the underlying reality of all things (Brahman).
Before dinner we watched and participated in the Diwali ceremony with Mr. Pandeys family.

From left to right:
Sivangi (daughter), Goodia (wife) Tuk Tuk (son) and Anil

Niteesh (Anil's brother) and Ashalesha (his older daughter who was not feeling well) are missing from the picture. Niteesh was back and forth setting off fireworks while Anil was setting up the lights before the evening began.

The hotel decorated the building and created the design on the right with colored sand.
We went to Mr. Pandeys home and everyone in almost ever home was shooting off fireworks all night. In addition, you could look almost everywhere and see public fireworks being shot off.











The picture on the right is the street where the Pandeys live. Their friends and neighbors are all shooting off fireworks and having fun. Jake and I watched fireworks from the roof of Mr. Pandeys home. All the buildings are made of concrete so there is no chance of fire. A stairway leads from the bottom floor to the roof so that people can add a second story to their homes and the stair is already built.

The little girl on the right is one of the Pandeys daughters. She is the cutest funniest little girl and she loves having her picture taken. Behind her are some of Mr. Pandeys neighbors. When we left the entire neighborhood lined up on the street and cheered for us as we left. On the way home, everywhere you looked, there were fireworks in the sky.

India

This week I find myself more and more thinking about our time here. In addition to medical treatment, we have made new life-long friends that I will miss. I have learned a lot about and enjoyed the fine people of India. From all the people at the clinic, to the caring employees at the hotel and the hard workers in the streets and of course the Pandeys. As we look forward to our return hopefully with a good second MRI (scheduled for Thursday) part of me will always remember India and what it has taught me simply by living here.

Here is a moment, a feeling that cannot be put into words and falls short even as a video by comparison of really being there but I hope you enjoy it 1/10th as much as I did being there.
Click on the link:
http://www.intelligentsolutions.tv/video/india.wmv

Contact Information

I have realized that some people are having problems sending comments possibly because they have difficulty understanding how. As this blog now seems to be viewed by people outside my friends and family, I have added an email address gbm@cytotronforcancer.com if there are people that need to communicate with us in the event that they have questions or a loved one that may have a same or similiar sickness.
I only ask that you please keep the following in mind if sending an email:
1. Please do not send any solicitations or spam
2. Please do not send any chain letters
3. Please do not send any forwarded emails as this will promote spam
The potential problem with a public email address is that it can become so full of spam that I would have to delete it which would do no one any good. Ultimately I would like communication sent by comments for non family or people I do not know but I understand if there is difficulty understanding how to do this.

Awestruck

There are moments. Indescribable in words. Barely defined through pictures and video but never quite realized except in person. This post is not about Jake, it is about a moment I had in India that I will never forget. Sitting in Dr. Sibia's office talking to him and his wife, something I look forward to each day. (His coffee is great too!) I have learned about greater things there. Even though the main reason for this trip was to save Jake, I have been blessed with more... knowlege and insight about people in general. I believe the world would be a more peaceful place if we all could spend some time in different countries to see how others co-exist with one another and to see and feel their pain and happiness. To look and make decisions from afar is unfortunately very limiting. As Dr. Sibia remarked to me today, the best education may be through travel.
Anyway, I am sitting across the desk from Dr. Sibia and his wife talking about Jakes treatment and Mrs Sibia stops and says "Did you see what just walked by the window?" I turned around but missed it. I walked to the window and was too late. So Dr. Sibia (nice man that he is) said "Lets go after it and take a picture" I said "Really?!" We hopped into his car and drove down the street camera in hand and I captured perhaps the best moment I have ever seen of co-existence and harmony. Something you would never see in the U.S. To see this on video is the best I can do, but does not do it justice. Seeing this in person is an experience I will never forget.
Click on the link:
http://www.intelligentsolutions.tv/video/awestruck.wmv

Itchy

Jake finished treatment day 47 today. Even with being very conservative and critical, I do feel that he is walking just a little bit better. He seems to rarely swing his left leg outward but seems to swing it straight and land just a little bit heel to toe now. More interesting than that was this morning as we were walking to the buffet and he stopped and bent over. I asked him what he was doing and he said his leg had an itch. I asked him which leg and he said the left. Tonight the same thing happened but with his left foot. His left leg and especially his foot have been numb since about a year ago. I am hoping that this is the beginning of feeling coming back to his foot as when a foot falls "asleep" and then begins to wake up. We will wait and see, cautiously optimistic as always. The last MRI in India is one week from tomorrow Oct 30, then 1 last day of treatment the following day and on the way home Nov 1st. Next Tuesday we will have our second major outing to a "Tiger Safari" and to the War Museum, then to a hotel nearby for refreshments. The safari and museum are only a hour long and just 15 minutes away so it should be ok for Jake. The tigers are in cages of course. Also starting next week is the famous India light festival where for many days there will be fireworks each night to celebrate life and everywhere will be lit with lights. We will be going to Anil Pandeys home that night for dinner and then up his stairs to the roof to watch the fireworks.
One last note, Happy Birthday to Alex my son who is 19 today!

Jake on NewsX

Jake was on the news last night. Lets keep in mind that the camera adds 10 pounds and so does the buffet.
Here is the link
http://www.intelligentsolutions.tv/video/newsx.wmv

Treatment Day 43

Jake started treatment day 43 which is the beginning of the last 14 days of treatment. Dr. Sibia re-calibrated the guns in the Cytotron so that the guns that were originally aimed at the core of the tumors are now positioned more towards the edge and the guns that were positioned at the edge are now positioned at the core. This and the second treatment are being done to try and hopefully be certain that we have been redundant and successful in stopping any growth from anywhere in his brain. The 12cm range of the Cytotron is both vertically and horizontally which encompasses the area from the top of his head, down to his jaw and from the left side to the right side of his brain. The MRI is now 12 days away and we will hope for great results and then a press conference the following day before we leave for home. We are now I hope on the home stretch and will be able to report good news soon and concentrate more on rehab only when we get back to the states.
Time to punch up all the prayers to Warp 10 Mr. Sulu

Jake On Tv

Jake is going to be on Tv, I believe tomorrow night (Sunday). A team of reporters came over to the clinic to interview him and yours truly about the Cytotron and his results. Dr. Sibia told them that Jake was rather quiet but not to worry, Dan can talk for a long time! Then Dr. Sibia told them that I was a fine actor (for any of you casting directors listening out there) and decided to show them the "Dannix" video located under the blog entitled "Tough Guy". I suppose this now makes me a Bollywood celebrity and Dannix now an internationally famous film.
That being the case and in an effort to improve US/India relationships (or at least mine) , I have contacted Priyanka Chopra the most beautiful woman in the world, who just finished the movie Drona (and is now resident in my mind of people to be stranded on a desert island with) to discuss the possible filming of a sequel to Dannix ie: "Dannix goes to India"
So far I have not heard back from her.

Samosa & Pakora

Here we have two of the best snacks I have had so far while in India. The first one her on the right is called Samosa. It is meatless with potatoes and spices













Here is my absolute favorite so far. It is called Pakora which is vegetable fritters made with cauliflower and spinach. There is a sweet sauce at the bottom that you dip it in.
Da-Rool Da-Rool!

Dan's Quotes

And now.. a new section of the blog not unlike Bullwinkles Corner.....Dan's Quotes!

1. First they ignore you, then they laugh at you, then they fight you, then you win.
Mahatma Gandhi
2. Nice guys finish later not last
Dan Pastel
3. Always be one of the nice guys
Nathan Weinstein
4. Never ever ever quit
Winston Churchill
5. If you are going to go through hell, keep going.
Winston Churchill
6. History will be kind to me for I intend to write it.
Winston Churchill
7."Hey, it takes a lot of nerve to have nothing at your age. Don't you understand that? Yeah, most guys would be ashamed, but you've got the guts to just say, ''The hell with it.'' You say that you'd rather have nothing than settle for less."
Lyle Rogers
8. Take Luck!..You Too!
Brian Regan

The Emotional Rollercoaster of Cancer

We were at dinner tonight, at the buffet and when I was returning from getting Jake his food I noticed his head sway in a odd direction. This was enough for me to ask him what it was. He said he felt the knot again for a moment. Immediately I questioned him and found that this is the first time in 3 weeks or more he had felt it and that it only lasted for a second. He still has had no headaches or other symptoms. As the evening progressed, there was no sign of other problems. I am counting on the fact that it is simply the tumor getting smaller or annoyed at the treatment.
We met a couple, Angie and Steve who have just started Cytotron treatment for colon and liver cancer. They are from Scotland and have also been battling their cancer for 2 years. Talking and looking at Angie, I can see the concern and fear she has for her own health and survival. There is a strong resemblence to the way I feel and we seem to share an instant unspoken communication and compassion for each other. Such seems to be the way it is for cancer patients and their loved ones. I felt my demeanor immediately switch from one of relaxation and calmness to that of controled anxiety when I saw Jake move his head. Now, I have started once again to tell myself that everything is fine and to remain cautiously optimistic. I understand that we cannot spend our lives worrying about possibilities that may never be and must concentrate on today. I remind myself that many people die everyday for many reasons other than cancer. Most of them probably do not even know it is coming so each day is precious and to be enjoyed, not spent worrying about possibilities. To continue to worry is a waste. To quote my friend Marshall, "Nothing is ever so bad that it can't get worse" The main reason I am writing this post is because when I felt the change in my anxiety, I started to try and understand what it reminded me of. After a moment of thought, I realized that it reminded me of a rollercoaster. At the bottom of the ride you are happy, carefree and comfortable. As the ride begins, you feel a slow growing anxiety that rises to fear as you approach the top of the ride. Then there is the moment when you are at the top of the ride neither going up or down, just in limbo waiting to see what is going to happen next. This is how I feel most of the time. Will the ride stop and slowly go back down to the ground or will I plummet into sheer terror in an attempt to reach ground level once again. The only thing that seems certain is that if we are lucky to achieve ground level (and I think we will) I will forever be on the ride, hopefully at ground level always, but never getting off the ride until someone announces the "Cure" as they did with Polio and many other diseases from the past. This, I imagine is how most cancer sufferers and their family feel. It is like some bad nightmarish Twilight Zone (Knew I would get a Tv reference in there somehow)
My brother (Angel Tay) told me something once that I still remember always. It was during the "salad days" as I like to call them (From "Raising Arizona") It was a time just a few years back of happiness and little worry when I had more of the comforts of home then many have or ever will have. Still, I found reasons to complain as we all do from time to time. He reminded me that right now is the best times of our lives. Right now we are all healthy. Every day we get older and more prone to illness. We are lucky, he added that we have all been so fortunate to have most of our loved ones healthy and alive at this age. Anything else is simply a gift, something extra but we should all be careful to remember the gifts we already have and not focus so much on the ones we feel we "need" Life can change in an instant he said. Was he ever right!

Trip To The Sweet Store

Huh? I thought you are supposed to lose weight in India because most of the food is vegetarian. Funny, but doesn't Dan look fatter in the pictures? Very possibly true. I do feel it is my responsiblity to take on the job of reporting all types of foods to the US and that of course includes sweets. So here we are at the Amanz Sweet Shop in Ludhiana. All of the sweets look very different from anything you have possibly seen. Outside the shop there are people making many of the sweets while you wait. We came in to the shop and the shopkeeper (on the right) had Anil and I sit down and have some food. It was delicious and when we left he told me as do all the people here that God is watching after Jacob and that he will be fine. I have included a better shot of all the desserts in the following video:

http://www.intelligentsolutions.tv/video/sweetstore.wmv

Winner! Best Drink In India!

Of all the food I have tried in India so far, Badam Milk is the best! It is made from almonds (badam) and is thick like a shake. The top of the drink has almonds on it and a thick covering that you peel off and eat then drink the liquid below. I will learn to make this drink for sure!

Homesick

Cowlage

I seem to have become obsessed with taking pictures of cows wherever they are. You might say I am becomming an alCOWholic. So I decided to make this "Cow"lage for all you to enjoy

As Austin Powers might say....MOO BABY!...VERY MOO!!

I'll Never Make It In Vegas

One thing I learned the hard way on this trip is that it is very difficult to get money from the states once you are here. Due to the Patriot act and terrorist activities sending money by Western Union or by bank once you are here is difficult. You cannot open up a bank account here unless you have a blood relative living here. If you have not arranged for payments to be taken care of before you leave the states then all that is left is the ATM. The payment is made in Rupees and the rate of Rupees changes each day so you need to calculate the conversion rate daily so that you can take out as much as necessary. I walk daily to the Atm while Jake is in treatment playing my "Frogger" game. I am getting pretty good at it only getting hit by a motorcycle once so far and that only caused me to get tire tracks on my pants. (Although I could have easily soiled my pants if you know what I mean. ) The most fun however comes when it is time to pay Dr. Sibia. I am not used to counting so many bills at once as the current rate today is 50 rupees per dollar so 300 dollars is about 14,385 rupees which is distributed in the ATM as 500 rupee bills and 100 rupee bills. The bills tend to stick together when I count them out for Dr. Sibia and I usually mis-count. So I developed my own style of counting which Dr. Sibia found facinating and decided to video. So here it is the first Bollywood film by the director Dr. Sibia and starring Dan Pastel entitled "An American Counting Money In India"
Click on the link:
http://www.intelligentsolutions.tv/video/anamericancountingmoney.wmv

Whoa!!!!!!!!!

Ok Mr. Trebeck, I'll take "Things That Leave You Speechless" for $100

I wanted to say.."Are we on Candid Camera?" Surely you jest!

Apparently this is a preferred method for some people and it solves the problem of getting exercise too. Very good for the lower body muscles. Brings new meaning to the exercise term "squats". Myself, I decided to hold it till we got back to the hotel... Or the United States.

Treatment Day 36

Today we finished Treatment day 35. Still with no headaches and a warmer left hand. We have started a new therapy using a machine called the LCS (Life Care Systems) Model 163 from http://www.lcsindia.com/ which is a muscle stimulator I attach the generator to different parts of Jakes left arm to stimulate the contraction of muscles and attempt to re-teach his brain to communicate with his hand. Apparently when the hand closes it is begun from a signal sent by the brain. A second signal is returned as the hand closes which is fedback to the brain. Because of the tumor, the first "sending" signal is not working. The goal of the treatment is to teach the brain a new sending pathway. Initially I was having problems locating the proper points to put the contacts so I experimented on myself. Kind of a new and interesting experience. We are now at less than 3 weeks before our return and each day seems to go a little slower but with less stress. I am certain that stress will begin to build for me as we get closer to the second MRI which will hopefully confirm the effectiveness of this treatment. Tonight is going to be our second night out. We are going to Mr. Anil and Niteesh's home and Niteesh who is an accomplished India cook is making us dinner. If we come back to India which hopefully would just be for a visit, they have insisted we stay with them instead of a hotel.

Wise words from India

When I first came to the clinic I remember seeing a sign posted that meant alot to me. I consider myself a very positive person, some might say too positive to the point of being unrealistic. However, I find that here in India there is a subtle wiseness that continues to teach me things I did not know or realize. The sign at the clinic says the following:

When you think positive your body makes good cells and when you think negative your body makes bad cells

This may be partially the answer to why Jake has beaten the odds of this disease so far. He is full of positive energy and optimism

From time to time, Dr. Sibia contributes to this blog as a comment and each time I find the comment wise, insightful and important. I enjoy posting his comments for all to see easily. While I continue to have cautious optimism in fighting this disease I try to always remain positive.

As Dr. Sibia states:
The whole body has the power to heal and regenerate itself. Stem cells have proved that each cell in the body has enough memory and capability to make a new "you" - only we still don't know well enough how to use that capability. I strongly believe that we doctors provide the environment for the body to heal itelf - the main process is done by an inbuilt 'software program' that is present inside each of us. In Jake's case Cytotron has provided the electronic environment and rest is done by Jake himself. For this positive thinking and encouragement by all play a very important role. When you think positive your body makes good cells and when you think negative your body makes bad cells - It is for you to decide which cells you want more in your body.

Marshalls Corner

Marshall and I are known as the two that will try anything. Initially when I was going to India I was cautious about trying any food on the street. In the hotel, I was brushing my teeth with bottled water and washing my hands with sanitizer. This was probably appropriate at the first hotel I stayed at in New Delhi, but our current hotel, the Fortune Klassik is very nice. In addition to trying every India dish at the buffet, I have been going out about every other day with Mr. Anil Pandey and we try something new on the street each day. I trust him to chose wisely. So far with the exception of Salty Lassi, I have liked everything and only had a minor stomach problem once when I tried some kind of root that is skinned and coated with spices. Every other time when I have food placed in front of me, I eat it with no problem and think "Man, I wish Marshall was here!"The pictures are some of the things I have had. they include:
Pav Bhahi
Idaly Bara
Jalebi
Samosa
ShakarKandi
Rasgulla
Rasmalai

Marshalls Corner (continued)

Jake In The News

Jake is in the news again. The article talks about the results from the MRI in the first stage of treatment and hopes for continued good results in the second half of the treatment. It continues to talk about us going to the movie Drona and everyones happiness at seeing Jake looking and feeling better.

Treatment Day 33

Jake had day 33 of treatment today. He seems to be doing fine. No return of motor function and any return this soon would be a pleasant surprise, but his left hand and his arm seem to be warmer then before when they were cold with bad circulation all of the time. We will be having the MRI on Oct 30 on the 27th day of treatment. This will leave one more day of treatment afterward. We are hoping for continuing good results and that after the last day of treatment we will be able to schedule a press conference at the hotel to report on good findings. We will begin the journey home on Oct 1st at 1pm when we will board a train from Ludhiana to New Delhi. The train will arrive at about 6pm and we will then take a cab to the airport. Our plane leaves in the middle of the night at 12:55 AM on Nov 2nd. With the time shift back 12.5 hours we should arrive in Los Angeles on Nov 2nd at 9:30 AM. It will be a pretty grueling trip. On the trip over we spent the first night in the hotel in New Delhi but the 7 hour car ride was very difficult. This way, Jake can sleep on the train and on the plane. Hard to believe I am talking about going home on the blog now when there are still over 3 weeks left. We are both homesick for the U.S. and at the same time I am feeling some sadness to leave all of the people we have come to know here. I hope that I might visit Ludhiana again, but only for pleasure and to promote good news about Cytotron.
The days are comfortably boring for a change, buffet in the morning, treatment till the afternoon and then programming while Jake sleeps. Afternoon brings Star Trek and Johnny Quest, then the dinner buffet. We finish off the day talking to people on Skype and I work on my laptop while Jake listens to music. The end of my evening is one episode of Boston Legal. We both like seeing Mr. Shatner daily for inspiration. In some ways this trip is relaxing. As at this moment the news is good, I am able to concentrate simply on programming for work. It has been more years than I can remember from when I had only one job and would watch television with any regularity, and many more years since I was able to read a book that was not a technical manual. I am almost finished with my third book. With Jake being off chemo, his needs are a lot less and I feel better seeing him be a little more independent. When we return I will be back to cleaning, laundry, side jobs, and hopefully begining physical therapy for Jakes arm and leg. I will be happy if only we do not have to deal with stopping these tumors again. I have begun writing the book "Saving Jake" which I hope to sell and promote awareness for Cytotron and fighting cancer in general as well as producing some income that can be used to help other people with similiar battles. A good 2nd MRI will mean to me that the reason Jake got sick was so that he could be a strong positive influence for others and I can be a motivating force to bring this treatment to the world. I pray this will be the case and if so.. watch me go!

Jake In The News...Again!

Treatment Day 31 and Jacob is once again in the news. This time talking about the MRI results
Click on the link:
http://www.intelligentsolutions.tv/cytotron/cytotronshowspositivesignsforuscancerpatient.pdf
In addition, Jake and I were interviewed by another publication which may be released tomorrow.

A Message From Dr. Sibia

The following message is from Dr. Sibia to all:

I am Dr.Sibia and will request and welcome all comments and suggests on this blog as it will enable us to understand the views of others. I request everyone who goes through this blog to contribute daily if possible or email me at drsibia@sssibia.com or drsibia@gmail.com

The East is very interested in getting to know the views of the West and I am very happy to see the use of the Internet for this.

Meet the enemy...Frank

I went back and forth on this post but I thought it might be interesting although frightening and real for people to see the enemy we are battling. It becomes very real when you put a picture to the name. The top picture is before Cytotron treatment and the second picture is after. It is difficult to impossible for a lamen to see where the differences are for several reasons. First, it is impossible to capture the exact angle of the photographs as they were taken at two completely different times and there is no way Jake can possibly be in the exact position. Second, these may not be the same "slice" in each picture but according to the radiologist it there is no growth and some reduction.

Going to a movie!!! Our first night out!

Pretty excited. We are having our very first afternoon out of the hotel. We are going to see the new big India blockbuster Drona. It will be in Hindi, but we have looked at the trailer and read the synopsis and I think it should be pretty easy to follow. I picked a action film as a dialog based film would be much harder for us to follow.
Here is the link to the trailer:
http://www.youtube.com/watch?v=0AjpgVEG50w

Treatment day 29

I am happy to say that today was a comparatively boring day compared with the last 30 days. After the results of the MRI, I felt an almost immediate release of stress that I had buried intentionally from the time of the MRI diagnosis in San Diego now some 6 weeks ago. I suddenly felt very tired and slept fairly well last night especially for me. I woke up in the middle of the night with Jake sleeping next to me and watched him sleep for a moment reflecting on what was tantamount to reaching the top of a mountain. I realize we may have more mountains to climb and this could be only a rest stop. I am hopeful that we are now headed downhill for home and this will soon become a distant memory. Either way, I will attempt to rest for whatever the next journey entails while actually enjoying this rest time. Jake is sitting on the bed playing some kind of rap music I have never heard before. He seems to be more awake than the past month and I am certain he feels some sense of relief and welcome rest. In many ways, I feel like we are back 3 years before when I was programming at my desk and he was sitting across at the other desk doing just what he is doing now. The only difference is that his guitar is not perched on his lap between him and the desk and he is not stopping every minute to play a guitar riff. We will hope for this in time. Either way it is nice to see him off of chemo and more alive.
Jake began his second half of treatment today. The procedure will be modified somewhat in this second half where the main idea is to be doubly certain that none of the tumor or potential "seeds" have been missed. This is done by taking 1/2 of the 288 guns and focusing them on the center of the tumors while taking the other half and focusing more toward the outer areas of the tumors. After 14 days, the guns that were aimed at the core will be placed on the outside and the guns that were on the outside will be focused on the inside. the machine is able to treat a 12cm area in the X and Y axis which covers almost all of the area of his brain. This again for me was a major consideration for this treatment.. the delivery mechanism and coverage. In addition, we will soon be receiving a machine that we will take back with us to the US. This machine will electrically stimulate Jakes left hand to cause it to open and close. What has been found is that when a hand motion is carried out, an impulse is sent out by the brain. When the hand moves, there is a return signal sent back to the brain. By stimulating the hand to close electronically, a signal will be sent back to the brain and may cause the brain to find a new pathway to deliver the sending signal and therefore help Jake regain his left side motor activity.

A message from Jake

Click on the Link:
http://www.intelligentsolutions.tv/video/messagefromjake.wmv

Touching Letter From Dr. Sibia

After the good news from the MRI many have received the bonus of a nice letter directed to all. I had not posted publically until now due to the fact that tomorrow is Dr. Sibia's birthday and his anniversary on Sunday, but instead sent it out in my regular group email so it would be a surprise. Many of you who read it instantly sent well wishes to Dr. Sibia which he enjoyed. I just received this email from him I would like to share.
Thanks for your email and the greetings and warmth in it. Treating Jake has been a mixed experience – the sorrow of seeing a brilliant talented youth having tumor in the brain, the satisfaction of being in a profession where we can give hope to life and the pleasure of receiving birthday greetings from you. The least I can say is that Jake has increased the circle of our extended family.
Today is the 28th day of treatment and I have just returned after seeing the MRI report and discussing it with Dr.Bakshi, the Chief Radiologist in charge of the MRI.
I could not receive a greater birthday gift than the report that the tumor of Jake is no more progressive – NO GROWTH, SOME REDUCTION. This is on expected lines as even an inactive tumor will be visible radiologically. It can be compared with a dead tiger – not growing but visible that will decay over time. Tumor regression after Cytotron will be gradual affair and previous experience has shown that the tumor remains take about 3 years to disappear.
I once again thank you for your greetings and take this opportunity to invite you to visit India. India may not be a well known country to you and I assure you that you have nothing to fear – not even the traffic as videoed by Daniel and put up on http://jakepastel.blogspot.com !!!
Have a nice day. – and if you have a party to rejoice at the MRI report remember I am with you and the party is not only for Jake’s health but also my birthday.
Regards to you, your family and your colleagues.
Dr.Sibia
I had talked to Dr. Sibia earlier before the MRI, with his wife Dr. Harpreet Kaur Sibia as we pondered what today's results would be. I mentioned that I hoped he would take tomorrow off for his birthday. His wife told me that in India they believe it is more important to celebrate each day of life and that by practice they minimize their birthdays as not more than just another day. Everyday that I am here I learn something new about myself and the world and I like it.

Success!! No Growth And Some Reduction

Jake's MRI showed NO GROWTH, SOME REDUCTION. This is exactly what was hoped for and expected by Dr. Sibia and Dr. Kumar. The technology behind this treatment seeks to restore the proper cell membrane potential (-90mv in healthy cells -20mv in cancerous cells) This re-design of the cells stops them from being cancerous and they should eventually die out over the course of months or years. Given the fact that the last two MRI's in San Diego showed growth (the first one showed the start of the occipital tumor and the second showed more growth) and also given the fact that Jake's last chemotherapy was 6 weeks ago, he has now had no growth for 6 weeks while being on nothing but Cytotron! This is very encouraging. In a time where we have all been cautious and nervous this is a time to be happy and relieved. We will be staying the second 28 days and will continue on that treatment starting tomorrow. Additional good news is that we will not have to take a 2 week break in between because the edema (swelling) was less which brings us back home 2 weeks earlier, around Nov 5th and in time for Jakes birthday. In addition, clinically his headaches are gone 99% of the time and the "knot" he has felt in the back of his head is gone also. There has not been any return of left side function but that may take months to years. Perhaps most importantly, I believe Jake is the first patient with a non-resectable Glioblastoma that has been treated with the Cytotron. October 3rd, 2008 is a date where history has been written! Prior patients had tumors that I believe were at least partially resected. This is landmark. We will hope for continuing success. The next 28 days should further insure that no cells are left untreated.
What is the future? I would say hopeful, however I will have to quote what I found in Dr. Sibia's office:
"Life comes with no guarantee of eternity. So it is no surprise that each of us eventually lose the attempt to live forever. Cancer, Arthritis, etc makes us uncomfortable and our end nearer - that's all. Similarly, no treatment can guarantee relief, cure or eternity. ACT, ECT and Cytotron therapy etc, are weapons to fight against the diseases and the fight must go on forever."
I realize that as good as this treatment turns out, our fight may not be over and in either case we will always be looking over our shoulder. Hopefully, with medical advances like Cytotron we will stay at the crest of the wave and ahead of the curve until an absolute cure is available. For Jake, Cytotron may or may not be the cure but either way, today is a great cause for celebration and that is what each of us including Jake should always keep in our minds.
And now to quote Nora Desmond "All right Mr. De Mille, I'm ready for my nervous breakdown"

The link below is the video commentary by the radiologist:
http://www.intelligentsolutions.tv/video/jakeat28dayswithcytotron.wmv

It All Comes Down To This

I guess I can't add. Actually tomorrow is Jakes 28th day of treatment so we will do his MRI tomorrow afternoon. We will hope to have results sometime that day which would translate to Friday in the early morning hours ie: 5am California time. I will post some type of results as soon as I have them. If they are to be delayed I will post something anyway. We are going to sleep early as tomorrow will be a big day for Jake. Hopefully tomorrow we make some history and begin the task of sharing this technology with the West. Let us all give positive thoughts, prayers and cross our fingers.

Driving To The Clinic

Today our cab driver was late, actually he did not show up apparently because he got in a car accident. (Go figure) So I called Mr. Pandey and he had another cab sent over. This driver was either Mario Andretti in a previous life or simply wanted to make certain we did not arrive late. Whatever it was, I would say that both Jake and I set a record on the number of times we both simutaneously said JESUS!! out loud at the same time. Actually we were real lucky this time because I happened to have my camcorder running

Click on the link:

http://www.intelligentsolutions.tv/video/drivingtotheclinic.wmv

Boating in India

While I was fearing for my life, on the trip to the clinic to day, in the back of my mind I was thinking what would it be like if there was boating in India.
Click on the Link:
http://www.intelligentsolutions.tv/video/boatinginindia.wmv

4 am

4 am again. Officially we have now been away from our home for 1 month. Both of us are pretty home sick. Jake plays his Indy video daily and looks at his photo album while communicating primarily on My Space. For some reason he is not much of a Skyper. I continue to surprise people with calls to their cel phones using my Skype account. For $6 a month I have a San Diego number which makes it free for me to call. Callers on the other end see it only as a San Diego call. It is fun hearing their surprise when they get a call from India. This morning as I woke up and began thinking too much again. I went again to my computer to check my email. I was surprised and delighted to get an email from my niece Ariela's friend Sashe' about a company called Beckstrand that will be sending a gift basket with restaurant cards to Jake. The hope is that when Jake gets home he will have had good results and he can stay off chemo and be able to start making up for the 2 years of not being able to be a teenager by reconnecting with his friends. The cards will help him be able to go out and get a bite to eat with friends from time to time.
We received a plant from the hotel today which was also a nice surprise. All over and around us people continue to be generous with their time and involvement in this journey. It is especially nice to see how the world has gotten together for Jake from people that are in his family to friends and people we do not even know. Talking to Jake at the buffet yesterday, we discussed how we had now been away for a month and hopefully will be away for another. Jake said "Yeah, I am getting pretty sick of this Cancer thing." Then he added, "But I have gotten a lot closer with a lot of people." The generosity of all involved has helped indirectly to extend Jakes network of emotional support. I know he feels good as do I that people from here and the West are so very supportive. It is like a big hand helping hold us up and a strong motivator to keep on going. Going through this alone would be much much harder but even this far from the states we never really feel alone. Thanks again to all for that.

Jake, Anil and Niteesh

It turns out that in addition to Anil Pandey fasting for nine days, also his brother Niteesh will be fasting for Jakes benefit. They both stopped by today to visit Jake and me and I shot a little video of them with Jake.
Click on the link:
http://www.intelligentsolutions.tv/video/jakeanilniteesh.wmv

Mr. Anil Pandey

You have heard me mention Mr. Anil Pandey, my sort of guardian angel here in India. I met Mr. Anil (He calls me Mr. Daniel) through Prathiba, a friend of Dale (Angel Tay) my brother. She then introduced me to her friend Puneet who has been helping with details of the trip. Puneet connected me with her brother Veneet and through Veneet I met Mr. Anil. Mr. Anil comes over every couple of days and we go out for about a hour while Jake sleeps and try India food from vendors on the street. Today we tried ice cream which was very good. So far, the only thing I have not liked is a drink called Lassi. Too salty for my taste. Each time we go out, Mr. Anil brings back treats for Jake which is very nice. Mr. Anil tells me that I am his father and he is my son. Yesterday I was very touched when he told me that starting today and for 9 days he will fast, eating nothing but fruit and juice, a ritual in order to help ask God for good results on Jakes MRI. I thought you all should meet this wonderful person. Here is a short clip of Mr. Anil showing me a book store in town.
http://www.intelligentsolutions.tv/video/anilpandey.wmv

Up at 4am...again

4 am and I am up again. Each day this week seems to move slower and slower as we come closer to the MRI. Thankfully I have my laptop and email so I can work and communicate. Othewise I would be spending a lot of time looking at Jake sleeping and then up at the ceiling. This way, I get some work done and get tired enough to go back to bed. The feeling of a sick child is as indescribable as a parents love for them.

To Boldly " Go" Where Few Americans Have Gone Before

I feel a responsibility to inform and educate those of you that may not be fortunate to see customs in other countries. Therefore in todays lesson we will talk about "Waste Evacuation".
When I first arrived in India at our Hotel and went into the bathroom to "Comb My Hair" (This is an expression used by my brother Jack and I for many years to describe exactly what men do when they go into a crowded restroom with only 1 stall and it is occupied. Rather then just stand around and do nothing, men, seeing that there is no availability will wash their hands and comb their hair in an attempt to say to others waiting in the bathroom "I really just came in to do this" and then exit and return 5 minutes later hoping that the stall is now empty. )
Anyway I arrived in the hotel and upon visiting the washroom noticed something odd
and terrifiying. There was only one roll of tissue paper and it was very very small! Not
anything like what we are used to in the states especially at Costco. "Obviously they are
not aware of the famous Pastel constitution and its needs. This could be a big problem!

Then I saw it. In the corner of the room, what looked like a garden hose attachment connected to a silver hose. It could not be! Do they...?
I rang room service and asked for spare rolls and went upon with the days and weeks until...
There I was.... Not unlike any of us have been. In that situation. A strange house with an empty roll! What to do? No tissue available anywhere. No way out! The device taunted me. It was as if it had a voice of it's own. "Cmon, try it, it's ok. I hesitated, reviewed my options, hesitated again and then finally relented. The result...PRETTY GOOD. PRETTY, PRETTY, PRETTY GOOD!
As a matter of fact, I have to say, if I was building a house I would definitely include one. A great savings of paper, an excellent tool, and you never are the victim of the last few inches of a empty roll or in trouble with the thickness of a bargain brand.
One word of caution though. Don't try this at home. So excited was I about this new found device that I decided to demonstrate it on the web cam ( Fully clothed of course for my friend who I am sure would want to remain nameless) You need to be carefull if you decide to demo this because the trigger action is very touchy and you can end up as I did.. soaked from the pants down.

Important Life Lesson

I learned an important life lesson today. I thought I would bring my video camera on the walk to the ATM while Jake was in therapy to show you a street view of the danger I face each and every day while dodging traffic. Unfortunately, I learned today what happens when you divert all your attention to the street and get too close to a bull.
Click on the link:
http://www.intelligentsolutions.tv/video/cow.wmv

Let me just say I have not seen anything that big since Jurassic Park when Jeff Goldblum exclaims "Now that is one big piece of..."

Things to bring to India

It had been brought to my attention by my sister Pam that I might want to include some of the things I have learned while staying here so that in the event that this blog is used by others needing a similiar treatment, they could use this as a guide. Therefore, here are a few things I have brought and some I did not bring that would make the stay so far away from home easier. I will continue to update this section as I think of other things even though this will become an older post.
1. Electrical power strip. Most of the outlets are 220v and although most computers and modern devices will run on both the power cords are different.
2. Extension cord. Most of the outlets here are connected to the light switches, so if you turn off the lights, you turn off your laptop.
3. Foreign power adaptors and an inverter
3. UPS battery backup. Power failures occur sometimes 5 times per day. Not fun if you are working on a computer
4. USB Hub. For computer geeks like me.
5. Multistandard DVD Player and DVD's for entertainment
6. Ipod
7. Books
8. Webcam for Skype to keep in touch
9. Choose a good hotel as a lot of time is spent there. Ours is lovely. Be sure there is Internet.
10. DARK CHOCOLATE!
11. Any snacks or American food you might miss.

Treatment Day 21

We just returned from Day 21 of treatment and I received this nice comment from Dr. Sibia that I would like to share with you:

Dear Daniel, This blog is not a simple blog - it is a link between the east and the west, between two cultures, between hope and dispair. It helps understanding each other's feelings, culture and aspirations better and throws light on the strong and weak areas of medical science in the east and the west. Anywhere east or west, the rich or the poor, in east or west the pain and suffering of illness is the same. Most of the time we think in terms of extremes in any situation - over time I have realized that the truth is somewhere midway. When dealing in medical science the biggest lesson is to know that there is much that we do not know - we are working to gain a litle more knowledge and a litle more experience each day so we can be of greater help to humanity over time. We welcome all information, suggestions and constructive criticism to enable us provide relief and where possible cure to those with any type of ailments.

I think the above comments speak by themselves of the many good qualities of the human race. In this journey I am continually enlightened by the amount of good will and humanity present in the world. I look at the West and the East as well as the entire world from different eyes now. In the midst of crime, violence and war it is easy to become disheartened and negative about the world we live in, but the broader truth is that there is much more good in mankind then we realize and we easily forget this fact. The support and caring we have received from the many doctors, nurses family and friends demonstrates this, a fact which Jacob and I will never forget. This journey represents hope and the bonus of new lasting friendships. Regardless of the outcome of the treatment I will remain in contact with my friends at home, at Rady Childrens and here in India and the Sibia Medical Clinic.

Treatment day 20

Today Jake had treatment day 20 which on Friday now puts us 8 treatment days away from an MRI on Saturday or on the Monday following. I have been up and down with excitement and fear but mostly controlled calmness and a little sleeplessness the last two days. Jake has been doing very well and is looking better each day with a little more energy each day. Tonight, he had two minor pains in the rear of his head at the tumor site. This is the first time since about 8 days. We realize this could be caused by reduction or increase of the tumor, or swelling (edema) in other words, it could be good, bad or nothing. I am choosing to try not to think about it which is not working very well. It is a difficult thing to wait and a frightening thing to ponder. MRI results will tell us the way our life will be headed. It is certainly harder than waiting for anything I have ever waited for in my life.
In other news, I was fortunate today to talk to Dr. RV Kumar, inventor of the Cytotron machine. I had several questions about Jakes treatment and it's possiblilities. Dr. Kumar spent a lot of time explaining to Dr. Sibia the answers to my questions. Then Dr. Sibia transcribed them so they would be most accurate. The email follows below:

Dear Daniel,
Cytotron is in it’s infancy and answers to many of the questions will be more confidently known with time only. Till then it is experience and calculated opinion that will prevail.
The questions discussed with Dr.Kumar this morning were as below.
1. What is the reason that there is a 2 week break in between treatments?
The 2 week break is not necessary. It is given to take care of edema if any so that it decreases in this period and also to break the monotony. It may in fact be better not to give the break if there is no evidence (radiological or symptomatic) of edema. Less the gap the less “breathing time” the tumor cells are likely to have.

2. Is there ever a 3rd treatment that is considered. What would be the reasons?
Of the over 200 patients treated in the research and thereafter a 3rd treatment was never required. Some of these patients had cytotron treatment over 5 years back and are still okay.
Even the 2nd treatment session is done with the view of it being a back up to decrease the chances of metastasis. Theoretically a 3rd treatment session can be given if there is reason to believe that there is recurrence.

3. Being that Jake has a Glioblastoma Multiforme that as I understand tends to "seed" in different areas of the brain, how confident can we be that we have fixed the problem and not missed new areas that might develop later. I realize there are no guarantees but do you have a feeling about this?
I think the answer to the above question gives us more confidence. We can only keep our fingers crossed and hope that the success seen in other patients is repeated in Jake’s case.

4. If there is no growth, is it likely to assume that in time after the treatments the tumor Will die off or will it remain the same size. What would cause it to do either one?
Yes, we can presume that. Studies have shown that the tumor (scar / necrosis material) takes 3 to 3½ years to disappear radiologically.

4. Is it possible that Jake will have a return of left side motor function?
Dr. Rangarajan who had GBM started recovering his vision and dependence on others by the middle of the second treatment session. He was evaluated and permitted to do surgery on patients. After 2 years he was permitted to drive.

5. How would we conclude that the treatment stopped the glioblastoma given its tendency to spread?
Symptoms and regular follow up MRI should help us conclude that Cytotron stopped the glioblastoma.

So there you are. We will not know until we know. It is logical to assume that by 1 week from Monday at the latest we will know what our next step is which will either be:
1. Starting the second half of treatment if the MRI shows no growth or reduction and no swelling. (This would be the best news and would would have us return 2 weeks earlier than originally planned and in time for Jakes 20th birthday.)
2. Two week delay before the start of the next phase of therapy if there is no growth or reduction but swelling
3. Return to the States early if there is growth and no improvement for our next treatment option

Let us all hope and pray for option 1

Fun With A Beard

Some people might be playing cards or reading magazines... Not me!
Click on the link:
http://www.intelligentsolutions.tv/video/capone.wmv

Sights

Here is the answer to a question many have asked me. "Are there cows hanging out in town? Yes, sometimes they hang out in the middle of the street. They are very cute.










This gentleman is making some type of potato based Indian food. He places a dough stuffed with potato and indian spices in the pot on the left which may be some type of oil and cooks it. It is quite good












Here we have a very delicious dessert which may be cooked in some type of sugar based oil, I am not sure, but it is very good.

Mr. Anil Pandy takes me out every few days and shows me some of the town and we always try something new. Usually when I am trying something new I am thinking how much fun Marshall and I would have here as we are not afraid to try anything. It appears that we are safe with fruits and anything else as long as it is cooked. We do drink bottled water. So far no stomach problems at all. Jake cannot accompany us on these journeys right now as he is still to tired and weak so we bring him back surprises. Still I have not found the perfect Chocolate place. It seems to be a minor player here.

Jake is looking good. Off Chemo seems to agree with him. He and I started growing beards but he decided against his.
I am growing my beard at Alex's request and will keep it till I get home

Looking Back...again

Those of you that do no know Jake or have really not gotten to know him personally may not realize that he is deep and introspective and hilarious. Many who have been able to spend one on one time with him during the course of the last 1.5 years remark at how funny he is and how deep, an "Old Soul" many have said. When Jake first got sick I asked that any one that was able should consider taking him out "one on one" for coffee to get to know the real Jake. All have been very happy that they did and as a result Jake is closer with everyone in his family and his new extended family. For those of you that have not had the opportunity to do this I would like to include a letter that as a father I am very proud of. This letter was from Jake to everyone one month after official diagnosis of his tumor and before we had any plan of action. It was perhaps the toughest part of our journey certainly mine. As I have stated previously, I am feeling best when I have a plan and at that point the treatment plan was still being formulated. Jake decided on his own to communicate with all he could through the following email:

Thoughts from Jake (March 19, 2007)
“Hello it’s me
As many of you know I have been diagnosed with a brain tumor. It is quite a surprise for myself. At first one could see it as a sharp attack from behind which in many instances it feels like it. Not many people do recognize a sense of magic that comes with this situation. I am not the person to see the situation as all black and morbid. It is as simple as ordinary existence. It is important to know that there are shadows and that there is light. This tumor has I feel given myself a greater reach for knowledge, which is exciting because there is still so much more. This tumor has even brought more than I thought spiritually and emotionally.
I am truly grateful for all the support everyone has given me. My medications cause side effects of extra hunger. The food has very much helped and I very much enjoy people’s unique recipes. Eating has always been s favorite of mine but even more now. True all this food can be overwhelming yet the day it stops coming scares me.
Everyone at many points in their life are told that people care for each other’s well being. True that information can be told but it is just now that for myself it is truly known. The support shown and given has alerted me of good people in the world. Everyone has shined good character. Maybe I can’t communicate the magnitude of appreciation and realization of everyone’s kindness but this is the best way I know how. I am very grateful.
“There are more things to admire in men than to despise”- Albertt Camus
It is important to understand I am doing well and my days are good. My days consist of movies, reading, and eating. I attend school but my work has been provided so I can complete it at home. Now this is my first update. I would like to close by passing on my thoughts. It is important to say anything and everything. I would also like all of you to Realize. I can’t expand on Realize it’s going to have to be your experience and thought. Once again thank you for your support and I am doing just fine.
Warm regards, Jacob S. Pastel”

Todays post brought to you by proud father.

A Very Exciting Day

Yesterday, a reporter from the Indian Express newspaper came out and interviewed Jake and I in our hotel room. The next day we were excited to read the article in 3 different papers! While at the clinic for treatment, Dr. Sibia informed me that the news article got the interest of a camera crew that is shooting a documentary about "Medical Tourism in India". The camera crew shot about 30 minutes of rough footage of which some will be used in the documentary. Jake seemed to be as excited and proud of it as I was. I am happy to help foster awareness of this new treatment. Sometimes I have considered that perhaps we are jumping the gun promoting a treatment when Jacob does not have personal conclusive results and will not for 11 more days. I realize that with the seriousness of this illness there is always a chance that this treatment will do nothing for Jake. However, regardless of how treatment turns out, I stand firm in my belief of the methodology of this treatment especially the way it is dispensed and the fact that there are no side effects. No treatment works for everyone but I do feel confident and hope that we will be happy with the outcome. We will all wait with crossed fingers and prayers.
That being said, I am continually overjoyed by the amount of caring and compassion we receive on a daily basis from all the employees at our hotel who constantly come up to me to ask how Jake is doing, to all the people at the clinic who have been very personal and friendly to both of us and to my "assistant" Mr Anil Pandy who watches out for us like a doting father. My latest evidence of this compassion comes from the news reporter who left me this email today:

Dear Daniel ,It was a real pleasure knowing you and your brave son Jake. I don't actually know how to tell you but one thing is true: I have been quite touched to see your love for your son and your son's determination.You can follow the link given below to access the story. Or you can also reach the story by typing "Jake's life will be a testimony for new-age medical marvel" on Google.Take care.
http://www.indianexpress.com/news/microchip-technology-to-invest-65-mn-in-india/364606/

This trip to India has truly been a pleasure. We have been welcomed in open arms and feel like a part of their family. I know that I will be staying in touch with the people of India for a lifetime and hope to discuss one day with Dr. Sibia how we wrote history and helped introduce Cytotron to America.
One last thought. I continually hear from people about what a fine job I am doing through all this. Really so much of the credit has to go to Jake who remains funny and upbeat even during the tough times and dissapointments. As for myself, I do consider myself a person that "Get's the job done" (Something I was recently discussing with my good friend Jack Souders when he was helping me explore possible additional employment opportunities to help with the cost of living in these frightening times.) Jack asked me what are my qualifications and I said, "I make things happen." Jack being from the same mold understood immediately. Those of us in electronics and computers learn and succeed more by perserverence than anything else. It is more the refusal to give up than anything else. The reason I point this out is to explain to others that success is borne out of stubborness and a refusal to accept no for an answer. It is the individual that is always looking forward, sometimes blindly and does not take their eyes off the goal. This is an important life lesson for anyone who wants to succeed at anything from becoming a Doctor to becoming an actor. I think the saying goes "Success is 10% inspiration and 90% perspiration" or one of my other favorite sayings, 'Never, never, never quit"
Here is the link to the newspaper articles:
http://www.indianexpress.com/news/microchip-technology-to-invest-65-mn-in-india/364606/

http://www.intelligentsolutions.tv/india/cancertreatmentbringsuscitizentoindia.pdf

http://www.IntelligentSolutions.tv/india/jakeslifewillbeatestimonialofnewagemedicalmarvel.pdf