It turns out that in addition to Anil Pandey fasting for nine days, also his brother Niteesh will be fasting for Jakes benefit. They both stopped by today to visit Jake and me and I shot a little video of them with Jake.
Click on the link:
http://www.intelligentsolutions.tv/video/jakeanilniteesh.wmv
Tuesday, September 30, 2008
Monday, September 29, 2008
Mr. Anil Pandey
You have heard me mention Mr. Anil Pandey, my sort of guardian angel here in India. I met Mr. Anil (He calls me Mr. Daniel) through Prathiba, a friend of Dale (Angel Tay) my brother. She then introduced me to her friend Puneet who has been helping with details of the trip. Puneet connected me with her brother Veneet and through Veneet I met Mr. Anil. Mr. Anil comes over every couple of days and we go out for about a hour while Jake sleeps and try India food from vendors on the street. Today we tried ice cream which was very good. So far, the only thing I have not liked is a drink called Lassi. Too salty for my taste. Each time we go out, Mr. Anil brings back treats for Jake which is very nice. Mr. Anil tells me that I am his father and he is my son. Yesterday I was very touched when he told me that starting today and for 9 days he will fast, eating nothing but fruit and juice, a ritual in order to help ask God for good results on Jakes MRI. I thought you all should meet this wonderful person. Here is a short clip of Mr. Anil showing me a book store in town.
http://www.intelligentsolutions.tv/video/anilpandey.wmv
http://www.intelligentsolutions.tv/video/anilpandey.wmv
Up at 4am...again
4 am and I am up again. Each day this week seems to move slower and slower as we come closer to the MRI. Thankfully I have my laptop and email so I can work and communicate. Othewise I would be spending a lot of time looking at Jake sleeping and then up at the ceiling. This way, I get some work done and get tired enough to go back to bed. The feeling of a sick child is as indescribable as a parents love for them.
To Boldly " Go" Where Few Americans Have Gone Before
I feel a responsibility to inform and educate those of you that may not be fortunate to see customs in other countries. Therefore in todays lesson we will talk about "Waste Evacuation".When I first arrived in India at our Hotel and went into the bathroom to "Comb My Hair" (This is an expression used by my brother Jack and I for many years to describe exactly what men do when they go into a crowded restroom with only 1 stall and it is occupied. Rather then just stand around and do nothing, men, seeing that there is no availability will wash their hands and comb their hair in an attempt to say to others waiting in the bathroom "I really just came in to do this" and then exit and return 5 minutes later hoping that the stall is now empty. )
Anyway I arrived in the hotel and upon visiting the washroom noticed something odd
and terrifiying. There was only one roll of tissue paper and it was very very small! Not
anything like what we are used to in the states especially at Costco. "Obviously they are
not aware of the famous Pastel constitution and its needs. This could be a big problem!
Then I saw it. In the corner of the room, what looked like a garden hose attachment connected to a silver hose. It could not be! Do they...?
I rang room service and asked for spare rolls and went upon with the days and weeks until...
There I was.... Not unlike any of us have been. In that situation. A strange house with an empty roll! What to do? No tissue available anywhere. No way out! The device taunted me. It was as if it had a voice of it's own. "Cmon, try it, it's ok. I hesitated, reviewed my options, hesitated again and then finally relented. The result...PRETTY GOOD. PRETTY, PRETTY, PRETTY GOOD!
As a matter of fact, I have to say, if I was building a house I would definitely include one. A great savings of paper, an excellent tool, and you never are the victim of the last few inches of a empty roll or in trouble with the thickness of a bargain brand.
One word of caution though. Don't try this at home. So excited was I about this new found device that I decided to demonstrate it on the web cam ( Fully clothed of course for my friend who I am sure would want to remain nameless) You need to be carefull if you decide to demo this because the trigger action is very touchy and you can end up as I did.. soaked from the pants down.
Sunday, September 28, 2008
Important Life Lesson
I learned an important life lesson today. I thought I would bring my video camera on the walk to the ATM while Jake was in therapy to show you a street view of the danger I face each and every day while dodging traffic. Unfortunately, I learned today what happens when you divert all your attention to the street and get too close to a bull.
Click on the link:
http://www.intelligentsolutions.tv/video/cow.wmv
Let me just say I have not seen anything that big since Jurassic Park when Jeff Goldblum exclaims "Now that is one big piece of..."
Click on the link:
http://www.intelligentsolutions.tv/video/cow.wmv
Let me just say I have not seen anything that big since Jurassic Park when Jeff Goldblum exclaims "Now that is one big piece of..."
Saturday, September 27, 2008
Things to bring to India
It had been brought to my attention by my sister Pam that I might want to include some of the things I have learned while staying here so that in the event that this blog is used by others needing a similiar treatment, they could use this as a guide. Therefore, here are a few things I have brought and some I did not bring that would make the stay so far away from home easier. I will continue to update this section as I think of other things even though this will become an older post.
1. Electrical power strip. Most of the outlets are 220v and although most computers and modern devices will run on both the power cords are different.
2. Extension cord. Most of the outlets here are connected to the light switches, so if you turn off the lights, you turn off your laptop.
3. Foreign power adaptors and an inverter
3. UPS battery backup. Power failures occur sometimes 5 times per day. Not fun if you are working on a computer
4. USB Hub. For computer geeks like me.
5. Multistandard DVD Player and DVD's for entertainment
6. Ipod
7. Books
8. Webcam for Skype to keep in touch
9. Choose a good hotel as a lot of time is spent there. Ours is lovely. Be sure there is Internet.
10. DARK CHOCOLATE!
11. Any snacks or American food you might miss.
1. Electrical power strip. Most of the outlets are 220v and although most computers and modern devices will run on both the power cords are different.
2. Extension cord. Most of the outlets here are connected to the light switches, so if you turn off the lights, you turn off your laptop.
3. Foreign power adaptors and an inverter
3. UPS battery backup. Power failures occur sometimes 5 times per day. Not fun if you are working on a computer
4. USB Hub. For computer geeks like me.
5. Multistandard DVD Player and DVD's for entertainment
6. Ipod
7. Books
8. Webcam for Skype to keep in touch
9. Choose a good hotel as a lot of time is spent there. Ours is lovely. Be sure there is Internet.
10. DARK CHOCOLATE!
11. Any snacks or American food you might miss.
Friday, September 26, 2008
Treatment Day 21
We just returned from Day 21 of treatment and I received this nice comment from Dr. Sibia that I would like to share with you:
Dear Daniel, This blog is not a simple blog - it is a link between the east and the west, between two cultures, between hope and dispair. It helps understanding each other's feelings, culture and aspirations better and throws light on the strong and weak areas of medical science in the east and the west. Anywhere east or west, the rich or the poor, in east or west the pain and suffering of illness is the same. Most of the time we think in terms of extremes in any situation - over time I have realized that the truth is somewhere midway. When dealing in medical science the biggest lesson is to know that there is much that we do not know - we are working to gain a litle more knowledge and a litle more experience each day so we can be of greater help to humanity over time. We welcome all information, suggestions and constructive criticism to enable us provide relief and where possible cure to those with any type of ailments.
I think the above comments speak by themselves of the many good qualities of the human race. In this journey I am continually enlightened by the amount of good will and humanity present in the world. I look at the West and the East as well as the entire world from different eyes now. In the midst of crime, violence and war it is easy to become disheartened and negative about the world we live in, but the broader truth is that there is much more good in mankind then we realize and we easily forget this fact. The support and caring we have received from the many doctors, nurses family and friends demonstrates this, a fact which Jacob and I will never forget. This journey represents hope and the bonus of new lasting friendships. Regardless of the outcome of the treatment I will remain in contact with my friends at home, at Rady Childrens and here in India and the Sibia Medical Clinic.
Dear Daniel, This blog is not a simple blog - it is a link between the east and the west, between two cultures, between hope and dispair. It helps understanding each other's feelings, culture and aspirations better and throws light on the strong and weak areas of medical science in the east and the west. Anywhere east or west, the rich or the poor, in east or west the pain and suffering of illness is the same. Most of the time we think in terms of extremes in any situation - over time I have realized that the truth is somewhere midway. When dealing in medical science the biggest lesson is to know that there is much that we do not know - we are working to gain a litle more knowledge and a litle more experience each day so we can be of greater help to humanity over time. We welcome all information, suggestions and constructive criticism to enable us provide relief and where possible cure to those with any type of ailments.
I think the above comments speak by themselves of the many good qualities of the human race. In this journey I am continually enlightened by the amount of good will and humanity present in the world. I look at the West and the East as well as the entire world from different eyes now. In the midst of crime, violence and war it is easy to become disheartened and negative about the world we live in, but the broader truth is that there is much more good in mankind then we realize and we easily forget this fact. The support and caring we have received from the many doctors, nurses family and friends demonstrates this, a fact which Jacob and I will never forget. This journey represents hope and the bonus of new lasting friendships. Regardless of the outcome of the treatment I will remain in contact with my friends at home, at Rady Childrens and here in India and the Sibia Medical Clinic.
Treatment day 20
Today Jake had treatment day 20 which on Friday now puts us 8 treatment days away from an MRI on Saturday or on the Monday following. I have been up and down with excitement and fear but mostly controlled calmness and a little sleeplessness the last two days. Jake has been doing very well and is looking better each day with a little more energy each day. Tonight, he had two minor pains in the rear of his head at the tumor site. This is the first time since about 8 days. We realize this could be caused by reduction or increase of the tumor, or swelling (edema) in other words, it could be good, bad or nothing. I am choosing to try not to think about it which is not working very well. It is a difficult thing to wait and a frightening thing to ponder. MRI results will tell us the way our life will be headed. It is certainly harder than waiting for anything I have ever waited for in my life.
In other news, I was fortunate today to talk to Dr. RV Kumar, inventor of the Cytotron machine. I had several questions about Jakes treatment and it's possiblilities. Dr. Kumar spent a lot of time explaining to Dr. Sibia the answers to my questions. Then Dr. Sibia transcribed them so they would be most accurate. The email follows below:
Dear Daniel,
Cytotron is in it’s infancy and answers to many of the questions will be more confidently known with time only. Till then it is experience and calculated opinion that will prevail.
The questions discussed with Dr.Kumar this morning were as below.
1. What is the reason that there is a 2 week break in between treatments?
The 2 week break is not necessary. It is given to take care of edema if any so that it decreases in this period and also to break the monotony. It may in fact be better not to give the break if there is no evidence (radiological or symptomatic) of edema. Less the gap the less “breathing time” the tumor cells are likely to have.
2. Is there ever a 3rd treatment that is considered. What would be the reasons?
Of the over 200 patients treated in the research and thereafter a 3rd treatment was never required. Some of these patients had cytotron treatment over 5 years back and are still okay.
Even the 2nd treatment session is done with the view of it being a back up to decrease the chances of metastasis. Theoretically a 3rd treatment session can be given if there is reason to believe that there is recurrence.
3. Being that Jake has a Glioblastoma Multiforme that as I understand tends to "seed" in different areas of the brain, how confident can we be that we have fixed the problem and not missed new areas that might develop later. I realize there are no guarantees but do you have a feeling about this?
I think the answer to the above question gives us more confidence. We can only keep our fingers crossed and hope that the success seen in other patients is repeated in Jake’s case.
4. If there is no growth, is it likely to assume that in time after the treatments the tumor Will die off or will it remain the same size. What would cause it to do either one?
Yes, we can presume that. Studies have shown that the tumor (scar / necrosis material) takes 3 to 3½ years to disappear radiologically.
4. Is it possible that Jake will have a return of left side motor function?
Dr. Rangarajan who had GBM started recovering his vision and dependence on others by the middle of the second treatment session. He was evaluated and permitted to do surgery on patients. After 2 years he was permitted to drive.
5. How would we conclude that the treatment stopped the glioblastoma given its tendency to spread?
Symptoms and regular follow up MRI should help us conclude that Cytotron stopped the glioblastoma.
So there you are. We will not know until we know. It is logical to assume that by 1 week from Monday at the latest we will know what our next step is which will either be:
1. Starting the second half of treatment if the MRI shows no growth or reduction and no swelling. (This would be the best news and would would have us return 2 weeks earlier than originally planned and in time for Jakes 20th birthday.)
2. Two week delay before the start of the next phase of therapy if there is no growth or reduction but swelling
3. Return to the States early if there is growth and no improvement for our next treatment option
Let us all hope and pray for option 1
In other news, I was fortunate today to talk to Dr. RV Kumar, inventor of the Cytotron machine. I had several questions about Jakes treatment and it's possiblilities. Dr. Kumar spent a lot of time explaining to Dr. Sibia the answers to my questions. Then Dr. Sibia transcribed them so they would be most accurate. The email follows below:
Dear Daniel,
Cytotron is in it’s infancy and answers to many of the questions will be more confidently known with time only. Till then it is experience and calculated opinion that will prevail.
The questions discussed with Dr.Kumar this morning were as below.
1. What is the reason that there is a 2 week break in between treatments?
The 2 week break is not necessary. It is given to take care of edema if any so that it decreases in this period and also to break the monotony. It may in fact be better not to give the break if there is no evidence (radiological or symptomatic) of edema. Less the gap the less “breathing time” the tumor cells are likely to have.
2. Is there ever a 3rd treatment that is considered. What would be the reasons?
Of the over 200 patients treated in the research and thereafter a 3rd treatment was never required. Some of these patients had cytotron treatment over 5 years back and are still okay.
Even the 2nd treatment session is done with the view of it being a back up to decrease the chances of metastasis. Theoretically a 3rd treatment session can be given if there is reason to believe that there is recurrence.
3. Being that Jake has a Glioblastoma Multiforme that as I understand tends to "seed" in different areas of the brain, how confident can we be that we have fixed the problem and not missed new areas that might develop later. I realize there are no guarantees but do you have a feeling about this?
I think the answer to the above question gives us more confidence. We can only keep our fingers crossed and hope that the success seen in other patients is repeated in Jake’s case.
4. If there is no growth, is it likely to assume that in time after the treatments the tumor Will die off or will it remain the same size. What would cause it to do either one?
Yes, we can presume that. Studies have shown that the tumor (scar / necrosis material) takes 3 to 3½ years to disappear radiologically.
4. Is it possible that Jake will have a return of left side motor function?
Dr. Rangarajan who had GBM started recovering his vision and dependence on others by the middle of the second treatment session. He was evaluated and permitted to do surgery on patients. After 2 years he was permitted to drive.
5. How would we conclude that the treatment stopped the glioblastoma given its tendency to spread?
Symptoms and regular follow up MRI should help us conclude that Cytotron stopped the glioblastoma.
So there you are. We will not know until we know. It is logical to assume that by 1 week from Monday at the latest we will know what our next step is which will either be:
1. Starting the second half of treatment if the MRI shows no growth or reduction and no swelling. (This would be the best news and would would have us return 2 weeks earlier than originally planned and in time for Jakes 20th birthday.)
2. Two week delay before the start of the next phase of therapy if there is no growth or reduction but swelling
3. Return to the States early if there is growth and no improvement for our next treatment option
Let us all hope and pray for option 1
Thursday, September 25, 2008
Fun With A Beard
Some people might be playing cards or reading magazines... Not me!
Click on the link:
http://www.intelligentsolutions.tv/video/capone.wmv
Click on the link:
http://www.intelligentsolutions.tv/video/capone.wmv
Wednesday, September 24, 2008
Sights
Here is the answer to a question many have asked me. "Are there cows hanging out in town? Yes, sometimes they hang out in the middle of the street. They are very cute.
This gentleman is making some type of potato based Indian food. He places a
dough stuffed with potato and indian spices in the pot on the left which may be some type of oil and cooks it. It is quite goodHere we have a very delicious dessert which may be cooked in some type of sugar based oil, I am not sure, but it is very good.
Mr. Anil Pandy takes me out every few days and shows me some of the town and we always try something new. Usually when I am trying something new I am thinking how much fun Marshall and I would have here as we are not afraid to try anything. It appears that we are safe with fruits and anything else as long as it is cooked. We do drink bottled water. So far no stomach problems at all. Jake cannot accompany us on these journeys right now as he is still to tired and weak so we bring him back surprises. Still I have not found the perfect Chocolate place. It seems to be a minor player here.
Tuesday, September 23, 2008
Looking Back...again
Those of you that do no know Jake or have really not gotten to know him personally may not realize that he is deep and introspective and hilarious. Many who have been able to spend one on one time with him during the course of the last 1.5 years remark at how funny he is and how deep, an "Old Soul" many have said. When Jake first got sick I asked that any one that was able should consider taking him out "one on one" for coffee to get to know the real Jake. All have been very happy that they did and as a result Jake is closer with everyone in his family and his new extended family. For those of you that have not had the opportunity to do this I would like to include a letter that as a father I am very proud of. This letter was from Jake to everyone one month after official diagnosis of his tumor and before we had any plan of action. It was perhaps the toughest part of our journey certainly mine. As I have stated previously, I am feeling best when I have a plan and at that point the treatment plan was still being formulated. Jake decided on his own to communicate with all he could through the following email:
Thoughts from Jake (March 19, 2007)
“Hello it’s me
As many of you know I have been diagnosed with a brain tumor. It is quite a surprise for myself. At first one could see it as a sharp attack from behind which in many instances it feels like it. Not many people do recognize a sense of magic that comes with this situation. I am not the person to see the situation as all black and morbid. It is as simple as ordinary existence. It is important to know that there are shadows and that there is light. This tumor has I feel given myself a greater reach for knowledge, which is exciting because there is still so much more. This tumor has even brought more than I thought spiritually and emotionally.
I am truly grateful for all the support everyone has given me. My medications cause side effects of extra hunger. The food has very much helped and I very much enjoy people’s unique recipes. Eating has always been s favorite of mine but even more now. True all this food can be overwhelming yet the day it stops coming scares me.
Everyone at many points in their life are told that people care for each other’s well being. True that information can be told but it is just now that for myself it is truly known. The support shown and given has alerted me of good people in the world. Everyone has shined good character. Maybe I can’t communicate the magnitude of appreciation and realization of everyone’s kindness but this is the best way I know how. I am very grateful.
“There are more things to admire in men than to despise”- Albertt Camus
It is important to understand I am doing well and my days are good. My days consist of movies, reading, and eating. I attend school but my work has been provided so I can complete it at home. Now this is my first update. I would like to close by passing on my thoughts. It is important to say anything and everything. I would also like all of you to Realize. I can’t expand on Realize it’s going to have to be your experience and thought. Once again thank you for your support and I am doing just fine.
Warm regards, Jacob S. Pastel”
“Hello it’s me
As many of you know I have been diagnosed with a brain tumor. It is quite a surprise for myself. At first one could see it as a sharp attack from behind which in many instances it feels like it. Not many people do recognize a sense of magic that comes with this situation. I am not the person to see the situation as all black and morbid. It is as simple as ordinary existence. It is important to know that there are shadows and that there is light. This tumor has I feel given myself a greater reach for knowledge, which is exciting because there is still so much more. This tumor has even brought more than I thought spiritually and emotionally.
I am truly grateful for all the support everyone has given me. My medications cause side effects of extra hunger. The food has very much helped and I very much enjoy people’s unique recipes. Eating has always been s favorite of mine but even more now. True all this food can be overwhelming yet the day it stops coming scares me.
Everyone at many points in their life are told that people care for each other’s well being. True that information can be told but it is just now that for myself it is truly known. The support shown and given has alerted me of good people in the world. Everyone has shined good character. Maybe I can’t communicate the magnitude of appreciation and realization of everyone’s kindness but this is the best way I know how. I am very grateful.
“There are more things to admire in men than to despise”- Albertt Camus
It is important to understand I am doing well and my days are good. My days consist of movies, reading, and eating. I attend school but my work has been provided so I can complete it at home. Now this is my first update. I would like to close by passing on my thoughts. It is important to say anything and everything. I would also like all of you to Realize. I can’t expand on Realize it’s going to have to be your experience and thought. Once again thank you for your support and I am doing just fine.
Warm regards, Jacob S. Pastel”
Todays post brought to you by proud father.
A Very Exciting Day
Yesterday, a reporter from the Indian Express newspaper came out and interviewed Jake and I in our hotel room. The next day we were excited to read the article in 3 different papers! While at the clinic for treatment, Dr. Sibia informed me that the news article got the interest of a camera crew that is shooting a documentary about "Medical Tourism in India". The camera crew shot about 30 minutes of rough footage of which some will be used in the documentary. Jake seemed to be as excited and proud of it as I was. I am happy to help foster awareness of this new treatment. Sometimes I have considered that perhaps we are jumping the gun promoting a treatment when Jacob does not have personal conclusive results and will not for 11 more days. I realize that with the seriousness of this illness there is always a chance that this treatment will do nothing for Jake. However, regardless of how treatment turns out, I stand firm in my belief of the methodology of this treatment especially the way it is dispensed and the fact that there are no side effects. No treatment works for everyone but I do feel confident and hope that we will be happy with the outcome. We will all wait with crossed fingers and prayers.
That being said, I am continually overjoyed by the amount of caring and compassion we receive on a daily basis from all the employees at our hotel who constantly come up to me to ask how Jake is doing, to all the people at the clinic who have been very personal and friendly to both of us and to my "assistant" Mr Anil Pandy who watches out for us like a doting father. My latest evidence of this compassion comes from the news reporter who left me this email today:
Dear Daniel ,It was a real pleasure knowing you and your brave son Jake. I don't actually know how to tell you but one thing is true: I have been quite touched to see your love for your son and your son's determination.You can follow the link given below to access the story. Or you can also reach the story by typing "Jake's life will be a testimony for new-age medical marvel" on Google.Take care.
http://www.indianexpress.com/news/microchip-technology-to-invest-65-mn-in-india/364606/
This trip to India has truly been a pleasure. We have been welcomed in open arms and feel like a part of their family. I know that I will be staying in touch with the people of India for a lifetime and hope to discuss one day with Dr. Sibia how we wrote history and helped introduce Cytotron to America.
One last thought. I continually hear from people about what a fine job I am doing through all this. Really so much of the credit has to go to Jake who remains funny and upbeat even during the tough times and dissapointments. As for myself, I do consider myself a person that "Get's the job done" (Something I was recently discussing with my good friend Jack Souders when he was helping me explore possible additional employment opportunities to help with the cost of living in these frightening times.) Jack asked me what are my qualifications and I said, "I make things happen." Jack being from the same mold understood immediately. Those of us in electronics and computers learn and succeed more by perserverence than anything else. It is more the refusal to give up than anything else. The reason I point this out is to explain to others that success is borne out of stubborness and a refusal to accept no for an answer. It is the individual that is always looking forward, sometimes blindly and does not take their eyes off the goal. This is an important life lesson for anyone who wants to succeed at anything from becoming a Doctor to becoming an actor. I think the saying goes "Success is 10% inspiration and 90% perspiration" or one of my other favorite sayings, 'Never, never, never quit"
Here is the link to the newspaper articles:
http://www.indianexpress.com/news/microchip-technology-to-invest-65-mn-in-india/364606/
http://www.intelligentsolutions.tv/india/cancertreatmentbringsuscitizentoindia.pdf
http://www.IntelligentSolutions.tv/india/jakeslifewillbeatestimonialofnewagemedicalmarvel.pdf
That being said, I am continually overjoyed by the amount of caring and compassion we receive on a daily basis from all the employees at our hotel who constantly come up to me to ask how Jake is doing, to all the people at the clinic who have been very personal and friendly to both of us and to my "assistant" Mr Anil Pandy who watches out for us like a doting father. My latest evidence of this compassion comes from the news reporter who left me this email today:
Dear Daniel ,It was a real pleasure knowing you and your brave son Jake. I don't actually know how to tell you but one thing is true: I have been quite touched to see your love for your son and your son's determination.You can follow the link given below to access the story. Or you can also reach the story by typing "Jake's life will be a testimony for new-age medical marvel" on Google.Take care.
http://www.indianexpress.com/news/microchip-technology-to-invest-65-mn-in-india/364606/
This trip to India has truly been a pleasure. We have been welcomed in open arms and feel like a part of their family. I know that I will be staying in touch with the people of India for a lifetime and hope to discuss one day with Dr. Sibia how we wrote history and helped introduce Cytotron to America.
One last thought. I continually hear from people about what a fine job I am doing through all this. Really so much of the credit has to go to Jake who remains funny and upbeat even during the tough times and dissapointments. As for myself, I do consider myself a person that "Get's the job done" (Something I was recently discussing with my good friend Jack Souders when he was helping me explore possible additional employment opportunities to help with the cost of living in these frightening times.) Jack asked me what are my qualifications and I said, "I make things happen." Jack being from the same mold understood immediately. Those of us in electronics and computers learn and succeed more by perserverence than anything else. It is more the refusal to give up than anything else. The reason I point this out is to explain to others that success is borne out of stubborness and a refusal to accept no for an answer. It is the individual that is always looking forward, sometimes blindly and does not take their eyes off the goal. This is an important life lesson for anyone who wants to succeed at anything from becoming a Doctor to becoming an actor. I think the saying goes "Success is 10% inspiration and 90% perspiration" or one of my other favorite sayings, 'Never, never, never quit"
Here is the link to the newspaper articles:
http://www.indianexpress.com/news/microchip-technology-to-invest-65-mn-in-india/364606/
http://www.intelligentsolutions.tv/india/cancertreatmentbringsuscitizentoindia.pdf
http://www.IntelligentSolutions.tv/india/jakeslifewillbeatestimonialofnewagemedicalmarvel.pdf
Monday, September 22, 2008
Tough guy
Many of you may be asking, "How does he do it? How does that Dan keep it together and still keep a smile on his face? Perhaps the answer is to look at the man behind the man... Dannix!
http://www.intelligentsolutions.tv/video/dannix.wmv
http://www.intelligentsolutions.tv/video/dannix.wmv
Video of Jakes Cytotron Treatment
Here is a video of Jake having Cytotron treatment. We finished day 17 today.
http://www.intelligentsolutions.tv/video/jakecytotron.wmv
http://www.intelligentsolutions.tv/video/jakecytotron.wmv
Sunday, September 21, 2008
Looking Back
As we near October we come closer each day to Jakes birthday on November 15th. Each birthday becomes a real celebration especially during these uncertain times. Our following has grown since November 2006 when Jake started having physical symptoms from immediate family to over to 100 persons and their families. All of them have been helpful in different ways, from simple words of support to donations of time, food or money. We continue to fight this disease and get close to 2 years of the battle.
Since there are so many more people following our story than there were 2 years ago, I thought it would be helpful for people that do not know Jake personally to take a look back at the last two years. Below are some video clips that I hope will make you understand more and feel closer to Jake.
1. Jakes 18th birthday video (2 weeks before symptoms started)
http://www.intelligentsolutions.tv/video/jake18thbday.wmv
2. Jake after radiation in the midst of steroids. (Thanks to the Blue Ryno foundation for letting Jake throw the first pitch at the Padres)
http://www.intelligentsolutions.tv/video/jakeatthepadres.wmv
3. "Jake's Story" The first charity benefit to raise money by my sister Pam and her daughter Lisa in New York to benefit the jakepastelcancerfund.org
http://www.intelligentsolutions.tv/video/jake.wmv
4. The Channel 10 news story before our departure for treatment in India
http://www.intelligentsolutions.tv/video/jake10news.wmv
5. Lastly, the dog behind the myth, the driving force that keeps Jake going, his dog Indy
(Jake would not speak to me if I left this one off)
http://www.intelligentsolutions.tv/video/indyxmas.wmv
Since there are so many more people following our story than there were 2 years ago, I thought it would be helpful for people that do not know Jake personally to take a look back at the last two years. Below are some video clips that I hope will make you understand more and feel closer to Jake.
1. Jakes 18th birthday video (2 weeks before symptoms started)
http://www.intelligentsolutions.tv/video/jake18thbday.wmv
2. Jake after radiation in the midst of steroids. (Thanks to the Blue Ryno foundation for letting Jake throw the first pitch at the Padres)
http://www.intelligentsolutions.tv/video/jakeatthepadres.wmv
3. "Jake's Story" The first charity benefit to raise money by my sister Pam and her daughter Lisa in New York to benefit the jakepastelcancerfund.org
http://www.intelligentsolutions.tv/video/jake.wmv
4. The Channel 10 news story before our departure for treatment in India
http://www.intelligentsolutions.tv/video/jake10news.wmv
5. Lastly, the dog behind the myth, the driving force that keeps Jake going, his dog Indy
(Jake would not speak to me if I left this one off)
http://www.intelligentsolutions.tv/video/indyxmas.wmv
Saturday, September 20, 2008
Shop and dodge
When you want a book or something like candy you need to go down into the market place. You can brave the streets by foot or by bike. Once again, no lanes, stop signs or street lights. No rules. The name of the game is "Don't die!"
Click on the link:
http://www.intelligentsolutions.tv/video/povintownindia.wmv
Click on the link:
http://www.intelligentsolutions.tv/video/povintownindia.wmv
Hey Kids! Don't Try This At Home!
Got some video for you of actual POV (point of view) driving through the streets of India. Notice that most places there are no lanes and no sidewalks and no signals or stop signs. Interestingly enough there is some type of a natural flow to the traffic because this is the way the people learn. I have yet to see any accidents and there are apparently very few. It seems more dangerous to to be walking on the street rather than on a motorcycle or car as one false move and you are road kill.However, I have yet to see any dogs, cows or humans get hurt yet and no one has road rage. Today, I was in search of an ATM and after 5 minutes of trying to cross the street, I went into the hotel and a concierge took me by the hand and got me across the street safely. He was laughing at me like "How could I be afraid" Then he talked to a Rickshaw driver and I paid him 30 Rupees to take me to the ATM and make sure I got back to the hotel in one piece. So, I am driving down the center of the street being passed by motorcycles, cars and buses and I am trying not to be a back seat driver to the Rickshaw driver but what I want to say is "Did you see that!!" Are you crazy! "Is he crazy!" "That was a bus! I looked to my left to see a 3 year old walking in the street and motorcycles missing her by inches while she is oblivious to the entire thing. I was a nervous wreck for about 1.5 hours!
Here is the real thing:
http://www.intelligentsolutions.tv/video/povdrivinginindia.wmv
Here is the real thing:
http://www.intelligentsolutions.tv/video/povdrivinginindia.wmv
Holy Cow Batman!
Get it! Holy.. Cow! These cute cows are here most days. This is the turnaround next to the clinic. I consider it level 5 in my "Frogger" cross the street game because cars are coming from 3 different directions and you need to get very close to the horns (Not the car horns, the cow horns. There is actually one more cow you can't see behind the sign. They are real cute. And they don't freak me out like the sheep at the Del Mar Fair. Really, what is it with the sheep that are wearing masks at the Del Mar Fair? They look like sheep executioneers! Being from LA my only experience with sheep is where Wile E. Coyote is trying to eat them and the sheepdog protects them. They look like nice white fluffy cumulous cloud sheep in that cartoon. Not masked executioneer sheep!
I know what you're saying "Dan's crazy" He is going stir crazy! Oh yeah? Just check this out:
http://www.youtube.com/watch?v=91ClBEM6JAU
Well, that's not exactly what they look like but they are still damn scary at the Del Mar Fair.
No new news on Day 15 of treatment. Everything going along fine. No headaches, Jake just tired.
Friday, September 19, 2008
1/4 Treatment done
Today was day 14 of treatment so we are potentially 1/4 the way done with treatment. We will have the MRI in two weeks and hope for good results. I tried a new internet service today but unfortunately the speed was too slow for my needs and the systems I maintain so I am going to have to stay with the original Internet. I added a feature to my Skype now for $6.00 per month which gives me voicemail in case I miss a call and I am now able to call phones in the US for free. So now you do not have to be near your computer I can call your land line or cel line. It should be a local call to you as it goes through skype Also, you should be able to call me at (760) 712-4643 which is local to you but will connect to my skype. In this case I would have to be by the computer but if I am not then you can leave voicemail. So if you see callerid of (760) 712-4643 it is a call from India
Not any luck finding a battery here so far because it is a US model so it looks like I will have to get a battery backup UPS today. One other interesting thing happened last night. We met a person at dinner that works for Medicare and he was at a medical convention in the hotel. They have seen Jake and I walking around and knew he was sick. This person Garry Reberio connected me with a doctor at the convention and I have forwarded him Jakes history. He is going to check with all the hospitals in the UK to see if there are any new treatments there that we should know about. I am continually trying to use the internet to break new ground into the exploration of how to stop this disease.
Not any luck finding a battery here so far because it is a US model so it looks like I will have to get a battery backup UPS today. One other interesting thing happened last night. We met a person at dinner that works for Medicare and he was at a medical convention in the hotel. They have seen Jake and I walking around and knew he was sick. This person Garry Reberio connected me with a doctor at the convention and I have forwarded him Jakes history. He is going to check with all the hospitals in the UK to see if there are any new treatments there that we should know about. I am continually trying to use the internet to break new ground into the exploration of how to stop this disease.
Thursday, September 18, 2008
Treatment Day 13
Jake had his treatment today and felt a lot more of the popping in his head. We are hopeful that this is good news. He is still very tired although yesterday he had more energy by comparison. He is scheduled for a massage at 4pm today to help stretch his muscles and get the blood flowing. It looks like I should have a new form of internet sometime tomorrow. I have finally given up on the hotel internet. Too unreliable. Dr. Sibia has arranged for us to use Wireless WiFi cards on a temporary subscription so I should be up all the time in a day or so.
Move over Nick Nolte... Feeling good after 2 weeks!
Well it has now been a little over 2 weeks since we left town and we are 1/5th through with treatment. All in all I would say this "vacation" has been very good for me. I am sleeping more than I have in the last 10 years. As you can see in the picture I am looking pretty good! Watch out ladies.. I am in my underwear! The next 8 weeks should be a breeze! Wednesday, September 17, 2008
Another day, another buffet
The title of this post was coined by Jake today who has not lost his sense of humor. We had treatment day 11 today with nothing much to report. Dr. Sibia had talked again to Dr. Kumar and Dr. Kumar indicated that they have seen the popping being caused by swelling or edema. This could indicate good things but we will not know till the MRI.
Although Jake seems to have more energy each day, I believe it will still be several weeks before he has long periods of not being tired. Both Jake and I have decided to grow beards. Alex has always wanted me to do this so this is for him. Worst case scenario would be that with all the buffet food, when I get back in November I could always use my white hair and beard to work for Macys as the department store Santa. Dr. Sibia is editing the video of the procedure and I will be posting it in a day or so. We had a nice time at treatment today, I sat in Dr. Sibia's office with coffee discussing Jakes case and Jake came in afterward to have some coffee to see if we could wake him up. He is asleep now on the bed and likely to remain so for a few hours. I finished my second book today which is the second book I have probably read in 15 years that was not a technical manual. I usually read while Jake is in treatment in the waiting room. Now on to more programming. We have had 2 power failures since I started this post so I hope my battery comes soon.
Although Jake seems to have more energy each day, I believe it will still be several weeks before he has long periods of not being tired. Both Jake and I have decided to grow beards. Alex has always wanted me to do this so this is for him. Worst case scenario would be that with all the buffet food, when I get back in November I could always use my white hair and beard to work for Macys as the department store Santa. Dr. Sibia is editing the video of the procedure and I will be posting it in a day or so. We had a nice time at treatment today, I sat in Dr. Sibia's office with coffee discussing Jakes case and Jake came in afterward to have some coffee to see if we could wake him up. He is asleep now on the bed and likely to remain so for a few hours. I finished my second book today which is the second book I have probably read in 15 years that was not a technical manual. I usually read while Jake is in treatment in the waiting room. Now on to more programming. We have had 2 power failures since I started this post so I hope my battery comes soon.
Monday, September 15, 2008
Treatment Day 9
Today, before treatment, Dr. Sibia donned his video camera and he shot video showing the setup procedure for the Cytotron, including showing Jake being placed in the machine and the laser calibration of the positioning of his head. Pretty cool. Dr. Sibia will be adding a narration and I will be posting it on the internet within the next few days. Jake said that in the area where the headache has been he has started to feel "Fizzing" and that then during the treatment again he felt some pops. Again, who knows but something appears to be going on.
I am starting to feel a little more at home now in the hotel. Jake still sleeps most of the time, but I am now caught up with sleep and can work on by brothers program a lot of the day. I still have had untold amounts of power failures but my battery should be here in about 2 days. I had brought along a mess O Dvds to watch that I have been meaning to watch for many years and discovered that the hotel did not have a dvd player and with trying to work and the problems of the power failures, using the computer just was not working. So I went into town and managed to find a cheap multistandard dvd player. The problem was that it is encoded for India and would not play US Dvds. I was bummed so I was forced to turn once again into Captain Video. I looked on the internet and found the hack code to get into the firmware of the Dvd player and hacked it to region 0 which means it will now play in all countries. I also was able to find my favorite movie "Ishtar" (Thats right, Ishtar GIVE IT A CHANCE!) here in the middle east. So now I can play that when I get home. The lesson here, never, never, never give up. To quote James T. Kirk, "I dont like a no win scenario". So now, I feel more at home because I can watch some movies from home while laying on the bed with Jake. Also this afternoon, I went out with Mr. Anil Pandy to the market in search of American food. I was successful in finding some american chocolate although not dark chocolate my favorite, chocolate none the less. Then we stopped by a cheap shoe store and I got some tennis shoes. I will now have to figure out a new reason not to work out in the health club that is part of the hotel and free. We found the movie theatre here and it is all India movies so we may brave one when Jake is feeling better.
That is all because in a few moments it will be BUFFET TIME! In closing for those of you who want to know the best part of the trip. It is definitely the laundry. They do all my laundry and even iron my socks. They put the shirts in plastic sleaves. It is beautiful.
I am starting to feel a little more at home now in the hotel. Jake still sleeps most of the time, but I am now caught up with sleep and can work on by brothers program a lot of the day. I still have had untold amounts of power failures but my battery should be here in about 2 days. I had brought along a mess O Dvds to watch that I have been meaning to watch for many years and discovered that the hotel did not have a dvd player and with trying to work and the problems of the power failures, using the computer just was not working. So I went into town and managed to find a cheap multistandard dvd player. The problem was that it is encoded for India and would not play US Dvds. I was bummed so I was forced to turn once again into Captain Video. I looked on the internet and found the hack code to get into the firmware of the Dvd player and hacked it to region 0 which means it will now play in all countries. I also was able to find my favorite movie "Ishtar" (Thats right, Ishtar GIVE IT A CHANCE!) here in the middle east. So now I can play that when I get home. The lesson here, never, never, never give up. To quote James T. Kirk, "I dont like a no win scenario". So now, I feel more at home because I can watch some movies from home while laying on the bed with Jake. Also this afternoon, I went out with Mr. Anil Pandy to the market in search of American food. I was successful in finding some american chocolate although not dark chocolate my favorite, chocolate none the less. Then we stopped by a cheap shoe store and I got some tennis shoes. I will now have to figure out a new reason not to work out in the health club that is part of the hotel and free. We found the movie theatre here and it is all India movies so we may brave one when Jake is feeling better.
That is all because in a few moments it will be BUFFET TIME! In closing for those of you who want to know the best part of the trip. It is definitely the laundry. They do all my laundry and even iron my socks. They put the shirts in plastic sleaves. It is beautiful.
Sunday, September 14, 2008
Day 8 of Treatment
Last night was a particularly difficult night for me and Jake. (Jake and I... sorry Dad) Jake had a small headache in the area of the tumor and no other symptoms, but considering it was a headache it was stressful to contemplate the possibilities. There was really not much I could do other than give him some medicine like Tylenol or Vicodin to help but it really was not that bad so we left it alone. It was more about what it might mean. I find myself obsessed with every feeling he gets which I suppose is probably not a good idea. I went to sleep at 9:30 pm stressed and resigned that there is nothing I can do but wait for results in three weeks. The next day, today I talked at length to Dr. Sibia about the situation and also discussed a game plan so that if there was a problem such as a severe headache, or seizure that I would know who to call and what to do. He had just been on the phone with Dr. RV Kumar, the inventor of the Cytotron and said that the Cytotron treatment can cause some edema (swelling) around the affected area. Therefore it is possible that the headache is a good thing. This was a potential relief although only the MRI will tell and that is about 3 weeks away. He gave us some medicine in case of headache and some other in case of severe headache along with ways to contact him any time of the day or night. I felt very comfortable and relieved that the doctors at this clinic are so receptive and compassionate about all we are going through. Having taken Jake away from all his family and friends sometimes seems selfish for me although it is with the idea of treating him with the absolute best thing I can find at the time. As this technology is so new it is really up to me to decide technically what I think is best as I know standard treatments have already been tried. I still believe that this treatment could bring about a huge success and since it has no side effects, it could be done over again if needed. Dr. Sibia has sent me a power point presentation about India to help us feel more at home, which I am posting for all to view if you like. It is very informative. Tomorrow, Dr. Sibia is going to video the procedure of Jake getting the treatment and then narrate it so that I can post it and you will be able to see what we are doing.
Here is the link to the powerpoint. You have to have Powerpoint installed to view it.
www.intelligentsolutions.tv/india/india.ppt
You may want to right-click on it and save as since it takes a minute to download
Here is the link to the powerpoint. You have to have Powerpoint installed to view it.
www.intelligentsolutions.tv/india/india.ppt
You may want to right-click on it and save as since it takes a minute to download
Saturday, September 13, 2008
Day 7 of Treatment
Well, we finished our first week of treatment. Dr. Sibia feels that Jake is walking better although I do not see any difference. Jake tends to walk better sometimes then others. He definitely looks much better and healthier off of the chemo. He is still tired a lot of the time but day by day he seems to stay up a little longer. I have finally become acustomed to the change in time which was brutal and can now work on by brothers program barring the constant power outages that sometimes leave 30 minutes of work gone. I have to get used to saving my work more often. I am waiting for a battery for my laptop which will save me most of the time. During the course of this week of treatment Jake has had a small "Knot" to describe it in the rear of his head which is near one of the main tumors that is being treated most directly. It is hard to know whether this is a good or bad sign. Yesterday during treatment he said he felt "popping" in that area and I will hope that is the destruction of the tumor. The 'knot" feeling comes and goes, never significant but rather more annoying and after a discussion with the doctor we have decided just to keep an eye on it and be certain that his vision remains good, that he has no nausea, and no headaches. As long as we do not get those symptoms, we feel it is safe not to assume anything is bad or at least a waste of our time until we know differently. It is good to know that Dr. Sibia is a close friend of R.V. Kumar the inventor of the Cytotron and that his case is being handled jointly by both people. Everyone in the hotel seems to know about Jacob and they are all sympathetic and very kind to us. Three weeks from today or perhaps the Monday following which would be October 6th (by coincidence his dog Indy's birthday) Jake will have his next MRI and we will decide whether or not to continue with this treatment. We will hope for a minimum of no growth and hopefully reduction and death of the tumors. The only thing that would elicit a MRI sooner would be symptoms of trouble.
I am always best when I have a plan so I have begun the process of what might be the next step in the event that this treatment is not successful. I try not to live in the future and try to remain in the present. Almost 1 year ago, Jake and I talked about what would happen if he were to die. I said that this was a poor way to spend his time and that people die every day. It was in his best interests to live in the now rather then in the forseeable future. As my friend Dale Beck told him, "You should think more about living then dying". And as my friend Patti Inzano told me, do no waste your time on what if's. Live in the now or the now is wasted. Many of you reading this may remark of my positive attitude and drive. Though a lot of it is true, I still worry and dread many hours of the day. Sleep is a comfort and a vacation from reality. I really am not much better than most. I perhaps am just a convincing writer.
I am always best when I have a plan so I have begun the process of what might be the next step in the event that this treatment is not successful. I try not to live in the future and try to remain in the present. Almost 1 year ago, Jake and I talked about what would happen if he were to die. I said that this was a poor way to spend his time and that people die every day. It was in his best interests to live in the now rather then in the forseeable future. As my friend Dale Beck told him, "You should think more about living then dying". And as my friend Patti Inzano told me, do no waste your time on what if's. Live in the now or the now is wasted. Many of you reading this may remark of my positive attitude and drive. Though a lot of it is true, I still worry and dread many hours of the day. Sleep is a comfort and a vacation from reality. I really am not much better than most. I perhaps am just a convincing writer.
Friday, September 12, 2008
So you may be wondering what does Dan do while he is waiting for Jake to come out of treatment?
Well since I am not allowed in the same room as Jake I am forced to amuse myself. In this case I
did so by taking self portraits of me trying to look like Harrison Ford. Pathetic, yes but a good point
to all those out there that decide to pursue jobs they think they "should" pursue rather than jobs
they would like to pursue. My advice, follow your passion and you will be successful. Just a side
note that has nothing whatsoever to do with the India trip.
Love those Fishes!
Before we left, several people wrote cards and letters for Jake to open when he was missing home. We have been opening one a day which has been very nice. Today, as I went to select the card for the day, I found one for me entitled "The best Dad I know" Inside was this clip that I made me feel very nice from an article in AARP about being 50:
You’ve always been the rightest person in the room—so why did your boss just fire you? You were certain your parents made terrible mistakes raising you—now your own kids say you made the same errors (and they’re forwarding their therapy bills to you). You’ve led a charmed life—but suddenly you know what it’s like to live with depression…or cancer…or losing a spouse…or a sudden turn in fortune that’s left you wondering how to pay the bills.
By the time we pass the half-century mark, we’ve all withstood our share of slights, indignities, or outright suffering. Watched our self-image go up in flames. Played a starring role in our own TV version of When Bad Things Happen to Good People.
And maybe it’s lucky. Lucky because we’ve seen enough, felt enough, been self-aware enough to learn from our experiences. What we’ve learned is that all of us are inherently flawed and very, very vulnerable; that this, in part, is what it means to be human; and that—most important—we really are all in this together. It’s the reason we treat our fellow humans with a heavy dose of compassion and respect. Okay, so it’s taken a handful of decades and some life upheavals to figure this all out. That still puts us in the catbird seat, compared with people who have never learned it at all.
Love those Fishes. This card was from Eric "the Fish" Fish and his family. I will say to Ilene what I always say to her in public. I love that boy of yours!
You’ve always been the rightest person in the room—so why did your boss just fire you? You were certain your parents made terrible mistakes raising you—now your own kids say you made the same errors (and they’re forwarding their therapy bills to you). You’ve led a charmed life—but suddenly you know what it’s like to live with depression…or cancer…or losing a spouse…or a sudden turn in fortune that’s left you wondering how to pay the bills.
By the time we pass the half-century mark, we’ve all withstood our share of slights, indignities, or outright suffering. Watched our self-image go up in flames. Played a starring role in our own TV version of When Bad Things Happen to Good People.
And maybe it’s lucky. Lucky because we’ve seen enough, felt enough, been self-aware enough to learn from our experiences. What we’ve learned is that all of us are inherently flawed and very, very vulnerable; that this, in part, is what it means to be human; and that—most important—we really are all in this together. It’s the reason we treat our fellow humans with a heavy dose of compassion and respect. Okay, so it’s taken a handful of decades and some life upheavals to figure this all out. That still puts us in the catbird seat, compared with people who have never learned it at all.
Love those Fishes. This card was from Eric "the Fish" Fish and his family. I will say to Ilene what I always say to her in public. I love that boy of yours!
Thursday, September 11, 2008
Treatment Day 6
Well, we seem to have settled into an interesting routine now. It goes sort of like this:
Wake up at about 4:3o am to 5:30 am (which is good considering the jet lag when I was waking up at about 2am) Check email, talk to people on Skype. Jake gets ready for the day, then me. We go to our favorite past time of the day which is the breakfast buffet. We spice things up by sitting at a new table each morning. Now that we are feeling particularly agressive we don't even sit at the tables in any order. Sometimes we may sit at one corner then at the complete opposite. The rules are to never sit at the same table twice. Pretty exciting. There are about 24 tables, so when we finish one round of tables we are partially done with one cycle of treatment. Then Jake takes a nap from about 9 am to 10:30 am and we go down to the lobby and pray that the cab driver shows up. At about 10:50 am, I am usually on the phone to my assistant asking where the cab is and they answer the same....Hello? Here in India it seems that when people do not understand you, they either nod and say "Yes" then do nothing or say "Hello?" I have found one person who speaks very good English at the front counter so if he is there we are in good shape. Anyway, we go to treatment which lasts about an hour. I cannot sit in the room so I walk around the town. It is not a lot of exercise but the adrenalin is up when I try to cross the street. Then we go back to the hotel and we usually have the lunch buffet and then Jake takes about a 5 hour nap. I usually take a 3 hour nap. I get some work done, if the internet is up and then we nap again. Napping is really fun! It is almost as good as the breakfast buffet. Yesterday I did go over to the health club and look at the machines but I did not bring any tennis shoes so I could not use it. So today, instead of my nap, I went with a cab driver to the "mall" in India. Quite unimpressive. They do have a KFC and a McDonalds that serves only chicken based sandwiches. They have a metal detector at the entrance and guards that frisk you. You are not allowed to take pictures. Guards are everywhere. I went to the Adidas store and looked at some shoes but they were 2900 rupees and I never pay more than 2875 rupees in the states so I went back, discouraged and had a nap. It is interesting that I am so tired. I think it is partially boredom and partially underlying stress over what will be the outcome of the treatment. Even in the cab ride today we went fairly far into the town and there really is not much to do that I have found so far. Also, Jake who is looking better each day and gaining some strength now that he is off the chemo still has a very limited amount of time where he can do things. We are going to try the dinner buffet tonight and I notice that in the corner there is a speaker and an echo machine so there is a possibility of Karaoke and you know I will video that. That is about it. The days seem to roll into the next. We are sort of like in jail, sort of like in war, just doing what we need to do and getting through it one day at a time. Perhaps by next week Jake will feel good enough that we can be more active. Till then, I figure I am making up for about 25 years of lost sleep during the raising of my kids. I may even return with less bags under my eyes. Pictures and some video of the interesting television will follow.
Wake up at about 4:3o am to 5:30 am (which is good considering the jet lag when I was waking up at about 2am) Check email, talk to people on Skype. Jake gets ready for the day, then me. We go to our favorite past time of the day which is the breakfast buffet. We spice things up by sitting at a new table each morning. Now that we are feeling particularly agressive we don't even sit at the tables in any order. Sometimes we may sit at one corner then at the complete opposite. The rules are to never sit at the same table twice. Pretty exciting. There are about 24 tables, so when we finish one round of tables we are partially done with one cycle of treatment. Then Jake takes a nap from about 9 am to 10:30 am and we go down to the lobby and pray that the cab driver shows up. At about 10:50 am, I am usually on the phone to my assistant asking where the cab is and they answer the same....Hello? Here in India it seems that when people do not understand you, they either nod and say "Yes" then do nothing or say "Hello?" I have found one person who speaks very good English at the front counter so if he is there we are in good shape. Anyway, we go to treatment which lasts about an hour. I cannot sit in the room so I walk around the town. It is not a lot of exercise but the adrenalin is up when I try to cross the street. Then we go back to the hotel and we usually have the lunch buffet and then Jake takes about a 5 hour nap. I usually take a 3 hour nap. I get some work done, if the internet is up and then we nap again. Napping is really fun! It is almost as good as the breakfast buffet. Yesterday I did go over to the health club and look at the machines but I did not bring any tennis shoes so I could not use it. So today, instead of my nap, I went with a cab driver to the "mall" in India. Quite unimpressive. They do have a KFC and a McDonalds that serves only chicken based sandwiches. They have a metal detector at the entrance and guards that frisk you. You are not allowed to take pictures. Guards are everywhere. I went to the Adidas store and looked at some shoes but they were 2900 rupees and I never pay more than 2875 rupees in the states so I went back, discouraged and had a nap. It is interesting that I am so tired. I think it is partially boredom and partially underlying stress over what will be the outcome of the treatment. Even in the cab ride today we went fairly far into the town and there really is not much to do that I have found so far. Also, Jake who is looking better each day and gaining some strength now that he is off the chemo still has a very limited amount of time where he can do things. We are going to try the dinner buffet tonight and I notice that in the corner there is a speaker and an echo machine so there is a possibility of Karaoke and you know I will video that. That is about it. The days seem to roll into the next. We are sort of like in jail, sort of like in war, just doing what we need to do and getting through it one day at a time. Perhaps by next week Jake will feel good enough that we can be more active. Till then, I figure I am making up for about 25 years of lost sleep during the raising of my kids. I may even return with less bags under my eyes. Pictures and some video of the interesting television will follow.
Wednesday, September 10, 2008
Frogger
Watch the little girl in the yellow dress play "Frogger"
www.intelligentsolutions.tv/video/frogger.wmv
www.intelligentsolutions.tv/video/frogger.wmv
Tuesday, September 9, 2008
Day 5
Got some pictures for you as you can see. Jake sits down here outside the hotel at 10:45 every day while we wait for the cab. The cab is usually late and I call and try to explain that he is missing. People just look at me and say "Yes". Jake seems to be doing better every day, at least as far as being tired is concerned. There is no indication of change tumor wise one way or the other. We get up in the morning about 7am and he takes a shower then me, then we have the breakfast buffet at the hotel. (The highlight of our day). Then he takes about a 1.5 hour nap and we catch the cab to the Sibia Medical clinic. His treatment is an hour so I read a book. Then the Cytotron technician talks to me about what he had to eat and I never know what it is we are eating and she does not understand english so today, I am bringing her pictures from my camera. By the time we get back from the hotel, he is usually exausted but every day he seems to get more energy. As we speak now, he is playing with Itunes his Uncle "Angel Tay" got him. In some ways it is like being home with the main thing missing Indy his dog while I work on the computer. Our life is somewhat boring as there is not much to do right now until he feels stronger to be out for a while. When I am bored, I try and cross the street without getting killed. It is alot like playing the video game "Frogger". Included in the pictures uploaded is the Lady Cytotron technician "Vina" and the men help wheel Jake up the stairs and into the cab when we are done.
Monday, September 8, 2008
Here are 4 videos for your enjoyment.
The first two are actual videos of us driving to the clinic.
The other 2 are in honor of Marshall as they have to do with food.
www.intelligentsolutions.tv/video/drivingtotheclinic1.wmv
www.intelligentsolutions.tv/video/drivingtotheclinic2.wmv
www.intelligentsolutions.tv/video/indiabuffet1.wmv
www.intelligentsolutions.tv/video/indiabuffet2.wmv
Enjoy
Sunday, September 7, 2008
Treatment day 2
Today was perhaps the best day we have had so far but a long way from where we need to be. Jake woke up and showered. Then we went downstairs to the hotel lobby to have our first complimentary buffet breakfast. Jake had a fair amount of energy and looked very nice. He ate very well and loved the buffet. Then he went back into the room and rested for about 1 hour and we then got up and went to the clinic. Jake had his treatment. When he got out of the treatment he told me that he had a moment lasting about 3 seconds where he felt what seemed like a beam of electricity shoot down his left leg to his toes. I discussed it with Dr. Sibia who said "Lets hope it is a good sign. " It is certainly too early to make any assumptions but I will assume it is a positive as normally he could feel nothing in his left leg, but time will tell.
We returned to the hotel following the treatment and Jake slept from about 1pm to 4pm. At that time we decided to go down to the cafe in the hotel and treat ourselves with some chocolate. The evening buffet does not start until 7:30 and I thought we should get some energy into him. Initially Jake was a little hesitant but after he was down and had some coffee he perked up. We had some dessert, then went back to the hotel room and got through 10 minutes of Star Trek before we both spaced out and started to doze.
Dr. Sibia has prescribed some nutrients for Jake to take to get his energy up. He attributes it to the lasting effects of chemotherapy, jet lag, and the long travel from New Delhi to Ludhiana. I additionally attribute it to some boredom. I believe that we will go through some tough times during the course of this next 30-60 days. The difficulty will be tempered by potential good results we get from the Cytotron. If he experiences any return of function to his left side then the rest of the treatment will be a breeze. However at this moment, we are both suffering from fatigue and a general disconnection from family. In this hotel, there are not a lot of places to go and right now Jake is too tired to do anything anyway. but hopefully if the Cytotron works then the combination of return of some function and the dwindling effects of the chemotherapy will make things a lot easier. Any positive results from the Cytotron will be a key factor in keeping Jake going. Otherwise family and friends will be an important factor. I would encourage anyone and everyone to send a email to moptop464@yahoo.com which is Jakes email address and congratulate and affirm what we are doing. I think he needs a lot of affirmation from family that he is doing the right thing and to make sure he sticks it out. Be sure to let him know how proud we are of him.
We returned to the hotel following the treatment and Jake slept from about 1pm to 4pm. At that time we decided to go down to the cafe in the hotel and treat ourselves with some chocolate. The evening buffet does not start until 7:30 and I thought we should get some energy into him. Initially Jake was a little hesitant but after he was down and had some coffee he perked up. We had some dessert, then went back to the hotel room and got through 10 minutes of Star Trek before we both spaced out and started to doze.
Dr. Sibia has prescribed some nutrients for Jake to take to get his energy up. He attributes it to the lasting effects of chemotherapy, jet lag, and the long travel from New Delhi to Ludhiana. I additionally attribute it to some boredom. I believe that we will go through some tough times during the course of this next 30-60 days. The difficulty will be tempered by potential good results we get from the Cytotron. If he experiences any return of function to his left side then the rest of the treatment will be a breeze. However at this moment, we are both suffering from fatigue and a general disconnection from family. In this hotel, there are not a lot of places to go and right now Jake is too tired to do anything anyway. but hopefully if the Cytotron works then the combination of return of some function and the dwindling effects of the chemotherapy will make things a lot easier. Any positive results from the Cytotron will be a key factor in keeping Jake going. Otherwise family and friends will be an important factor. I would encourage anyone and everyone to send a email to moptop464@yahoo.com which is Jakes email address and congratulate and affirm what we are doing. I think he needs a lot of affirmation from family that he is doing the right thing and to make sure he sticks it out. Be sure to let him know how proud we are of him.
Saturday, September 6, 2008
Driving in India video
There is no substitute for the real thing but it is like this:
http://www.youtube.com/watch?v=RjrEQaG5jPM
http://www.youtube.com/watch?v=RjrEQaG5jPM
Treatment has begun!
I am sitting across from Dr. Sibia using his computer as Jake begins his Cytotron therapy. The last 24 hours have been particularly tiring for Jake. We had to drive 7 hours from New Delhi to Ludhiana by car. If you have never driven in India, it is a facinating experience. Search for "Driving in India" on you tube. It is no exaggeration!.
We arrrived yesterday evening and Jacob slept from 6pm till 8 am the following day. Then we were taken by taxi to the Sibia Medical Center where we met Dr. Sibia. He ordered an MRI from a nearby hospital and scheduled treatment for this afternoon at 3pm. The MRI was completed in a couple hours the same day, unheard of in the states. As we speak Jacob is in treatment and I am updating you as my internet connection is down at the hotel.
As I watch the people driving cars with no real sense of rules and people working so hard doing things from moving overweight loads to women carrying huge baskets of some type of produce on their heads, I feel even better about the potential of this treatment. Here seems to be a place where the person comes first. Progress does not seem to get caught up in paperwork. The person seems to come above all else. People are very kind and run to help us wherever we are. This is truly a life changing experience. I have a feeling that Jake may have gotten sick for a reason. If we are blessed and he can recover, I will know what my mission for life is. It may answer all the questions I have been asking for the last 2 years. Till then I will be quietly and cautiously optimistic and hope for the miracle that may very well be the Cytotron.
We arrrived yesterday evening and Jacob slept from 6pm till 8 am the following day. Then we were taken by taxi to the Sibia Medical Center where we met Dr. Sibia. He ordered an MRI from a nearby hospital and scheduled treatment for this afternoon at 3pm. The MRI was completed in a couple hours the same day, unheard of in the states. As we speak Jacob is in treatment and I am updating you as my internet connection is down at the hotel.
As I watch the people driving cars with no real sense of rules and people working so hard doing things from moving overweight loads to women carrying huge baskets of some type of produce on their heads, I feel even better about the potential of this treatment. Here seems to be a place where the person comes first. Progress does not seem to get caught up in paperwork. The person seems to come above all else. People are very kind and run to help us wherever we are. This is truly a life changing experience. I have a feeling that Jake may have gotten sick for a reason. If we are blessed and he can recover, I will know what my mission for life is. It may answer all the questions I have been asking for the last 2 years. Till then I will be quietly and cautiously optimistic and hope for the miracle that may very well be the Cytotron.
Thursday, September 4, 2008
Arrival in New Delhi
We have arrived in New Delhi. The plane ride was actually great. Michael Zimmering got us upgraded for free to first class which was a blessing because the seats turn into beds. They have movies..Yay!, music and great service. Everyone on the plane knew about Jake and they were extra nice. They even baked him fresh chocolate chip cookies. We arrived on time in New Delhi at 8:15 and checked into imigration, (not much fun), then sped past customs to baggage where we found that they left Jakes wheel chair in Chicago. So Jake used a rental wheelchair to get him past all the walking. The elevator was out of commission so we used the escalator. The assistant was looking at me, then the wheelchair, then me then the stairs. I think he was contemplating taking Jake down the stairs in the wheelchair but instead, Jake got up and with me in front and the assistant in back and slowly made his way down the stairs. We found the driver who was to take us to our hotel and proceeded to go through the crowded streets toward the hotel. We had met two ladies on the flight one of which travels to India every other year. She told us we would be staying in the nicest hotel in New Delhi. When we arrived at the hotel I realized that there must be more than one hotel with the same name as this hotel was certainly not the finest I had seen. It did come with bugs on the floor at no extra charge and the power goes off in the room about every 5 minutes. Real Indiana Jones stuff! Jake was laying on the bed and said "Dad, something just moved on my bed". We decided not to shower but rather to sleep in our clothes until we arrive at the hotel in Ludhiana the next day.
We will leave at 9am this morning and arrive in Ludhiana at the hotel by approx 3pm. Then we will freshen up and contact the clinic.
One final note would be a thankyou to my brother Jack who saw me in my Indiana Jones getup and told Jake that I look like I am in charge of the ride at Disneyland. Real ego booster.
We will leave at 9am this morning and arrive in Ludhiana at the hotel by approx 3pm. Then we will freshen up and contact the clinic.
One final note would be a thankyou to my brother Jack who saw me in my Indiana Jones getup and told Jake that I look like I am in charge of the ride at Disneyland. Real ego booster.
Wednesday, September 3, 2008
Who needs sleep anyway
Woke up a little early so thought I would just figure out how this site works. Pretty cool site.
Thanks to Dr. Kim for telling me about it.
Thanks to Dr. Kim for telling me about it.
Tuesday, September 2, 2008
Houston we are clear for launch
First get used to a lot of movie quotes. it is 10:49 pm and I am at my Dads computer after setting up Instant Messenger and checking Skype. My Ipod lost all it's music and as we speak i am reloading the entire collection. Jake is asleep with his mom by his side. We are ready to go!
Plane leaves LAX at 10:15 am tomorrow. We arrive in New Delhi by 8:30pm that night although it is 12.5 hours ahead of California so it will be 8:30am when we arrive by LA standards.
I figure by the time we are settled in the first hotel, the Imperial Palace, it will be close to 10am San Diego time. I will post here when we are settled. The next morning it is off to Ludhiana where we will check into the Klassik Hotel and arrange to see the doctor. By that time some time that day I should be all set up on Skype. Jakes skype is Jake.pastel and I am dlpastel
Plane leaves LAX at 10:15 am tomorrow. We arrive in New Delhi by 8:30pm that night although it is 12.5 hours ahead of California so it will be 8:30am when we arrive by LA standards.
I figure by the time we are settled in the first hotel, the Imperial Palace, it will be close to 10am San Diego time. I will post here when we are settled. The next morning it is off to Ludhiana where we will check into the Klassik Hotel and arrange to see the doctor. By that time some time that day I should be all set up on Skype. Jakes skype is Jake.pastel and I am dlpastel
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