Restfully Sleeping

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

In An Instant

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

Hoping

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

MRI Today

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

A Scare

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

Jake Getting Tanked

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

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

A Successful Fund Raiser

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

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

Jake Inching Back An Inch A Day

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

First Hyperbaric Treatment

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

Hyperbaric Oxygen Treatment For Jake

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

Dan On The Dave Congalton Radio Show

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

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

A Real Thanksgiving

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

Dear Dan,

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

The study of November 20, 2008 shows:

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

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

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

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

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

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

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

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

Thanks and Regards
Kumar

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

Jake Feeling Poorly

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

On The Radio Today At 4pm Pacific Time

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

http://www.920kvec.com/

Jake at home at last!

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

Walking The Halls Again

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

Jet Lag, Fever and Chocolate

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

Answers From Dr. Kumar Inventor of Cytotron

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

Click on the link:

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

First Day Back

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

The Jones Boys Are Back In Town!

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

Jake & Dan In The News

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

The Doctors Credo

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

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

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

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

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

Graduation Day

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

Looking Back...Yet again

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

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

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

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

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

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

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

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

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

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

Cytotron 3.... Cancer 0!!!

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

Captains Log supplemental Part 2

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

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

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

Captains Log...supplemental

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

Anti-Angiogenesis Treatment Day 4

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

Understanding Cytotron

I was fortunate to have a backround in electronics. This enabled me to recognize the viability of this type of technology. I was thinking however that when one was pressed with the problem of making a decision about a new treatment especially when standard treatments are not viable, it might be helpful if one could understand more about the technology and the procedure itself. For this reason, I created this short video that details a portion of the Cytotron treatment process.
Click on the link:
http://www.intelligentsolutions.tv/video/cytotronpart1.wmv

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

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

Detailed MRI Results

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

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

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

Jake Feeling Better

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



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

My Hat's Off To Jake

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

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

Some Results, Some To Come

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

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

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

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

MRI Results Pending

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

Fever gone, Jake Awake and Teasing Me

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

A Nice Story

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

Friday Morning Update

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

Update on Jake

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

Delay in results

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

2nd MRI Is Tomorrow

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

Always Learning

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

A Night Out In Ludhiana

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

The Diwali Festival

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

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

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

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











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

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

India

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

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

Contact Information

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

Awestruck

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

Itchy

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

Jake on NewsX

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

Treatment Day 43

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

Jake On Tv

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

Samosa & Pakora

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













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

Dan's Quotes

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

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

The Emotional Rollercoaster of Cancer

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