Jakes Funeral Program

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

Jake Pastel Memorial Video

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

The Funeral For Jake

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

The Jake Wake

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

Jakes Obituary

To read the obituary, click on the link:

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

The Little Things That Matter

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

Click on the link:
http://www.intelligentsolutions.tv/jake/mydadthemoviestar.pdf

Incredibly difficult

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

Happy Birthday Anne!

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

Memorial Services Information

Jake Pastel Memorial Services info

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

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

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

Bonfire for Jake

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

Premonition

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

Premonition

Oct 21st 2006

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

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

Monday Jan 12th 9:14pm

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

Jake has started his new life and job

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

Friday January 9th 8:25 AM

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

Friday Jan 9th 2:50 AM

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

Continuing Jakes Legacy...Another Wacky Idea

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

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

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

What I Feel Happy About

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

Touched again by India

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

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

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

Wednesday Jan 27 10:27 pm

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

A matter of time 4:29 Am Jan 06

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

Thanks for all the support

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

Monday January 5th 9:30pm

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

January 4th Evening

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

January 3rd. Evening

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

Jan 2nd 2009 Evening

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

Jake Up And Aware This Morning

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

New Years Day

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

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