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.