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.
https://www.youtube.com/watch?v=NbonEVCEHJY

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.intelligentsolutions.tv/jake/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.