Had a rough weekend. It all seemed to hit me again like it did 11 months ago. I spent a lot of time in bed trying to sleep away the pain. For this reason, this blog entry was a couple days delayed.
About 10 days from today it will be 1 year since Jake took his turn for the worst and we knew that there would be a sad ending to his long journey. On Dec 19th of last year I wrote the blog entry "A Scare". At that time I was hopeful that things would turn out fine but on December 30th the bottom fell out and as I wrote the blog entry "In an instant" we knew we were close to the end. On this day last year however, things still seemed promising and I instituted the annual "Tell Your Kids You Love Them" Day:
(From last year's blog)
Apparently it is Christmas time in the world. It all seems to be going on but I have not really noticed it. Life and India has taught me and reinforced what matters. Kiss and hug your kids for me today whether they like it or not. Tell them you love them even if you never have. If you are a Dad who never quite felt good about it or embarrased because that is not how you were brought up, do it anyway. I taught my Dad to do it. I think he actually likes it. Today December 19th is the first annual "Tell Your Kids And Friends You Love Them Day" There is no question in Jakes mind how much we love him and no question in our other kids minds either. In a world that is out of our control, you have control over this. If you don't have kids tell someone you love how much you care. Sit them down and spend a moment, look them straight into their eyes and spend a few minutes letting them know. Do it for Dan. This is the only Christmas present I want this year and every year. I have officially created this special day
That was last years message. Do it for me, for your kids and for yourself. And as always a continual thanks to everyone who has been a part of my life especially this year. Oh and by the way Alex and Anne... Daddy loves you.
Friday, December 18, 2009
Sunday, November 15, 2009
Blogging In Heaven, A Birthday Message For My Son Jake
Dear Jake,
I am pretty sure that you can read from where you are. You know and I know as well as many others that you are around. You have given me strange and funny signs in the last 10 months. Odd, but irrefutable proof that you are ok. As was the custom of your mother and I, on your birthday we would tell you about the day you were born.
November 15th 1988:
I got a call from your mom telling me that she was on the way to the hospital to have you. I was at work and she was at a routine checkup looking at your progress. In the past 9 months, you had spent a great deal of time causing problems. Your mom stayed on the bed nearly 6 months to have you be safe. Your mom had Placentia Previa. The doctor who along with your mom, was helping to be sure you would be fine and healthy told her that she was not going home at all today, that it was almost time.
Your mom called me and told me that we were going to have a baby today. (At least that is what I heard) I was at work and instantly became Dick Van Dyke, and Ricky Ricardo when their wives told them it was time. All of my logic flew out the window as I walked around excited and nervous in the shop at Captain Video wondering what I should do next. My employees said "Go Captain, Go." I raced out of the shop, jumped into my RX-7 and sped down to Scripps in La Jolla. (Kind of felt like I was in a movie..go figure) As I headed closer and closer to the hospital, I found myself getting more and more nervous and excited. I parked the car and ran through the parking lot and headed towards the maternity ward. With each step I grew more nervous and as I headed toward your room, I realized that I was probably hyperventilating. As I entered your room, I fully expected that I missed the entire event only to find out that my imagination had run away with me and that you were still many hours away from being born. As a matter of fact you would not be born till the morning of the 15th. As I calmed down realizing that you would not be here till possibly the next day I began to feel hungry. Very hungry. I told my wife (who at this point was not allowed to eat anything but ice cubes) that I was going to the cafeteria to get something to eat. (This was probably not a great thing to say, she was starving! )
Your mom had a tough labor. You were turned around the wrong way (always a renegade doing what you wanted to do) and caused your mom a lot of pain. The pain of birth and the end of your life on this earth were the only times you ever caused us pain or sadness. Your life on this earth was filled with joy for us and anyone that knew you.
Anyway, long story short, you were born. You came out crying and the one thing I will always remember is that when I picked you up and said "Hi Jake!" and you stopped crying immediately. You knew who I was, recognized my voice from the 9 months I spent talking to you from the outside. I walked to the parking lot towards my car hours later to go home and sleep for a while. As I walked to the car I looked at my life and vowed to be the most responsible and fun Dad that I could be. I began to look towards the future and all the movies we would watch together and fun times we would have. And did we have fun! Your brother arrived just 11 months later, the best surprise I could have had and I watched you grow up with your sister and brother. Always the calm one, the logical one. Knowing more than anyone your age. Truly ahead of your time. Watching my little family was and continues to be the greatest joy in my life. I wish every day that you could have been with me longer and I look forward to seeing you one day. Till then I will always celebrate your birthday with a feeling of life and thanks for all of the joy you have given me and the rest of the world. I love you, your sister and your brother with a level that compares to nothing else in this world. I am thankful for that, and for you sharing your life with me. Even some of the worst times were some of the best times. I would do it all over again with you.
I love you Jake, Anne and Alex, strongly and forever. Happy Birthday "Jake-old!"
While we try to teach our children all about life,Our children teach us what life is all about.~Angela Schwindt
I am pretty sure that you can read from where you are. You know and I know as well as many others that you are around. You have given me strange and funny signs in the last 10 months. Odd, but irrefutable proof that you are ok. As was the custom of your mother and I, on your birthday we would tell you about the day you were born.
November 15th 1988:
I got a call from your mom telling me that she was on the way to the hospital to have you. I was at work and she was at a routine checkup looking at your progress. In the past 9 months, you had spent a great deal of time causing problems. Your mom stayed on the bed nearly 6 months to have you be safe. Your mom had Placentia Previa. The doctor who along with your mom, was helping to be sure you would be fine and healthy told her that she was not going home at all today, that it was almost time.
Your mom called me and told me that we were going to have a baby today. (At least that is what I heard) I was at work and instantly became Dick Van Dyke, and Ricky Ricardo when their wives told them it was time. All of my logic flew out the window as I walked around excited and nervous in the shop at Captain Video wondering what I should do next. My employees said "Go Captain, Go." I raced out of the shop, jumped into my RX-7 and sped down to Scripps in La Jolla. (Kind of felt like I was in a movie..go figure) As I headed closer and closer to the hospital, I found myself getting more and more nervous and excited. I parked the car and ran through the parking lot and headed towards the maternity ward. With each step I grew more nervous and as I headed toward your room, I realized that I was probably hyperventilating. As I entered your room, I fully expected that I missed the entire event only to find out that my imagination had run away with me and that you were still many hours away from being born. As a matter of fact you would not be born till the morning of the 15th. As I calmed down realizing that you would not be here till possibly the next day I began to feel hungry. Very hungry. I told my wife (who at this point was not allowed to eat anything but ice cubes) that I was going to the cafeteria to get something to eat. (This was probably not a great thing to say, she was starving! )
Your mom had a tough labor. You were turned around the wrong way (always a renegade doing what you wanted to do) and caused your mom a lot of pain. The pain of birth and the end of your life on this earth were the only times you ever caused us pain or sadness. Your life on this earth was filled with joy for us and anyone that knew you.
Anyway, long story short, you were born. You came out crying and the one thing I will always remember is that when I picked you up and said "Hi Jake!" and you stopped crying immediately. You knew who I was, recognized my voice from the 9 months I spent talking to you from the outside. I walked to the parking lot towards my car hours later to go home and sleep for a while. As I walked to the car I looked at my life and vowed to be the most responsible and fun Dad that I could be. I began to look towards the future and all the movies we would watch together and fun times we would have. And did we have fun! Your brother arrived just 11 months later, the best surprise I could have had and I watched you grow up with your sister and brother. Always the calm one, the logical one. Knowing more than anyone your age. Truly ahead of your time. Watching my little family was and continues to be the greatest joy in my life. I wish every day that you could have been with me longer and I look forward to seeing you one day. Till then I will always celebrate your birthday with a feeling of life and thanks for all of the joy you have given me and the rest of the world. I love you, your sister and your brother with a level that compares to nothing else in this world. I am thankful for that, and for you sharing your life with me. Even some of the worst times were some of the best times. I would do it all over again with you.
I love you Jake, Anne and Alex, strongly and forever. Happy Birthday "Jake-old!"
While we try to teach our children all about life,Our children teach us what life is all about.~Angela Schwindt
Friday, October 9, 2009
Nine Months
Monday, September 28, 2009
Back to Hyperbarics
Well, I have been packing now for about a week in preparation to move out of the duplex. In my life now, I try to listen and let life take me where it will. About a month ago, I found out that my roommates would be moving out. I took this as a sign that it was time for me to leave the house where Jake died. "Where Jake died", still I have to pause in misery after I write that sentence. Still, it is unbelievable and so wrong. Still, I attempt to try not to dwell too long on it each and every day. The packing has had it's moments especially when I was packing up some of the things we decided to keep that belonged to Jake. As things were being packed up and large items moved, I have had sad reminders of his sickness in the form of objects from his treatment that fell behind couches, and cabinets. There always seems to be something to remind me, be it a sterile alcohol pad used for his injections or some medicine left behind used to treat his side effects. I am hopeful that this move will help me start over and remember mostly the good times with Jake.
I was contacted by Marshall's wife Pat about a lady whose son was stricken with Brain Stem encephalitis, a condition that swells the brain and can cause nerve damage affecting motor skills and speech. Such was the case with this young 36 year old man with a 10 month old child. Pat told me that they were looking into Hyperbarics at the San Diego Center for Hyperbaric Therapy which was one of the places I initially took Jake. She was looking for people to help with his treatment by driving him to and from the center. I volunteered even though I was a little nervous about how I would feel the first time I walked in without Jake. When I entered, I was greeted by Jennifer, one of the owners with a nice hug. We talked for a moment about Jake and she told me that they were seeing more patients getting treatment for brain related injuries with a lot of success. As I left Dan, (the name of the person I was bringing to treatment) and went outside to wait while he had his treatment I was surprised at how I felt. I was a little nervous about coming back to this place after Jake had died. It has always been pretty hard for me to go back to any place Jake had been when he was alive. However, as I walked out of the building I felt that I was not alone. I felt that Jake had been standing right beside me the entire time as if to say "Dad you are doing a good thing." Once again Jake while not physically here was still having an effect on both myself and people around me. It was good to see and talk to these friends I knew just a few months ago when we were treating Jake. There is some kind of unspoken comradery by people that help or go through these trials in life. A sort of everlasting friendship.
I was contacted by Marshall's wife Pat about a lady whose son was stricken with Brain Stem encephalitis, a condition that swells the brain and can cause nerve damage affecting motor skills and speech. Such was the case with this young 36 year old man with a 10 month old child. Pat told me that they were looking into Hyperbarics at the San Diego Center for Hyperbaric Therapy which was one of the places I initially took Jake. She was looking for people to help with his treatment by driving him to and from the center. I volunteered even though I was a little nervous about how I would feel the first time I walked in without Jake. When I entered, I was greeted by Jennifer, one of the owners with a nice hug. We talked for a moment about Jake and she told me that they were seeing more patients getting treatment for brain related injuries with a lot of success. As I left Dan, (the name of the person I was bringing to treatment) and went outside to wait while he had his treatment I was surprised at how I felt. I was a little nervous about coming back to this place after Jake had died. It has always been pretty hard for me to go back to any place Jake had been when he was alive. However, as I walked out of the building I felt that I was not alone. I felt that Jake had been standing right beside me the entire time as if to say "Dad you are doing a good thing." Once again Jake while not physically here was still having an effect on both myself and people around me. It was good to see and talk to these friends I knew just a few months ago when we were treating Jake. There is some kind of unspoken comradery by people that help or go through these trials in life. A sort of everlasting friendship.
Monday, August 24, 2009
A Wonderful Day
It has been a long time since I have written. I felt a loss of ambition and various up and down moments throughout each day. The loss of Jake never really seems to get much easier. The sharp edges of the pain are a little more dull but it is a long haul that I suppose never will really end. For these reasons, I have gone through some moments of less caring and some introvertness the past few months. At least several times a day I still have moments of disbelief that my son is gone. It think this will be forever, no matter what the grief counselors say. It has been a rough year all around with the passing of many public celebrities, Michael Jackson, Farrah Fawcett, Ed McMahon, and a friend Vince Ballardo who just passed this weekend in his sleep. It has become increasingly difficult to live in the house where Jake died and so when my roomates decided a couple of weeks ago to re-locate and my son Alex also decided to move out with friends, I felt that it was for good reason and that I should let life take me where it will, there must be a reason. I have begun the process of packing slowly for an eventual evacuation on October 1st. The economy has not been friendly to me and my job search progress and so, as it seems that it may be a long time before I would be able to consider being a homeowner again I have decided to relocate possibly closer to the beach where I will feel closer to Jake. In order to minimize the pains of moving so many items that I rarely will be using for a long time, I have begun selling selected items that may be of better use to others. One such item was the Les Paul guitar that I bought when I was about Jakes age and had given to him. This is where the title of this post comes from.
I advertised the guitar on Craigslist and had quite a few people interested in it. One person however stood out and asked to come see it. His name was Josh and he arrived at my house with his mother. As we started talking I came to find that he was born the same year as Jake and that they would both be near the same age now. As I spoke to him and his mother we both realized that this young man was very similiar in personality to Jake. It became apparent to me that this was the young man I wanted to give the guitar to. One thing led to another and an hour later we had watched Jakes 18th birthday video and spent the rest of the time talking about our kids. It felt very right to give this guitar to Josh. He seemed to have very similiar positive qualities just like Jake and I felt that Jake would approve. It was one of the first times I could talk about Jake and actually feel happy and proud even though he was gone. I could tell after talking to Josh and his mom that Jake was still changing other people's lives for the better and that made me happy. I will not see Jake again for a long time but I live for these positive moments and the ability to be able to show people how proud I am of him and all my kids. On the 9th of every month the aniversary of the day that Jake died, I think about him more than normal and try to keep busy. I have decided that on the 9th of every month I will plan to do something to help others for the entire day. I believe it is a positive way to deal with the anniversary of his death by trying to take the grief and turn it into something helpful. So the 9th of every month is up for grabs if anyone needs help from moving to computer help or anything I can do. (except gardening or painting, I hate gardening and painting!)
I advertised the guitar on Craigslist and had quite a few people interested in it. One person however stood out and asked to come see it. His name was Josh and he arrived at my house with his mother. As we started talking I came to find that he was born the same year as Jake and that they would both be near the same age now. As I spoke to him and his mother we both realized that this young man was very similiar in personality to Jake. It became apparent to me that this was the young man I wanted to give the guitar to. One thing led to another and an hour later we had watched Jakes 18th birthday video and spent the rest of the time talking about our kids. It felt very right to give this guitar to Josh. He seemed to have very similiar positive qualities just like Jake and I felt that Jake would approve. It was one of the first times I could talk about Jake and actually feel happy and proud even though he was gone. I could tell after talking to Josh and his mom that Jake was still changing other people's lives for the better and that made me happy. I will not see Jake again for a long time but I live for these positive moments and the ability to be able to show people how proud I am of him and all my kids. On the 9th of every month the aniversary of the day that Jake died, I think about him more than normal and try to keep busy. I have decided that on the 9th of every month I will plan to do something to help others for the entire day. I believe it is a positive way to deal with the anniversary of his death by trying to take the grief and turn it into something helpful. So the 9th of every month is up for grabs if anyone needs help from moving to computer help or anything I can do. (except gardening or painting, I hate gardening and painting!)
Monday, June 8, 2009
Thursday, May 7, 2009
Update From India
I have heard back from India regarding Jakes final MRI and the effectiveness of the Cytotron. My feelings as well as the feelings in India was that Cytotron was successful at least at containing the tumor during treatment but the disease got the better of him when we got home. It is unfortunate that only I was able to see the improvements in Jake and no one really saw this in the U.S. except for the video of him walking down the hall by himself in the blog post "Detailed MRI Results". The pictures of Jake in India and his physical improvements in color and strength, especially while being able to be off all chemotherapies and medication leave me with no doubt that this treatment was effective at least to some degree and will improve over time.
Thank you for taking the time and perserverence to get some answers. I will look forward to Dr. Kumar's comments.
My feeling is still that Cytotron is an excellent therapy and we may have had better results if we had tried it first rather than last. It is unfortunate that it is not available in the United States at this time. Still with that being said, I believe that in order to combat a glioblastoma it will probably be necessary to be able to do greater coverage of the entire brain simultaneously due to the diseases tendency to spread.. I believe the areas we treated worked at least during treatment and that his eventual loss was due to tumor growth after treatment was stopped. If the machine was in the U.S. he could have continued treatment. It will be interesting to see where we are in 5 years with this technology. I suspect that the areas of simultaneous treatment coverage will be increased. I hope to see the machine in the U.S. one day.
I also believe I should have had him on hyperbarics during his U.S. and India treatment. I should have put him on oxygen during the trip home and stretched the days out so it was not so hard on him. In addition, I should have had a mask on him as he caught some type of fever in the airport. He never really recovered from the trip. I do not blame myself for these oversights. In the end, the disease probably just got the better of him. Unfortunately we were all forced to try to learn too quickly and make decisions with no experience. We never dreamed of having to make decisions like this when Jake got sick in 2006. Only time, research and experience will teach us how to battle this disease.
That being said, I will never forget my times in India. They were some of the most wonderful and most difficult times of my life. I am forever changed by the experience. My views on life and what is important have changed for the better, forever. It was very rewarding to see Jake's walking improve, watch him get some sensation back in his legs and just to spend so much time with him when he was not feeling effects of any chemotherapy. After treatment every day at 3pm we would lay on the bed in the hotel and Jake would rest his head on my shoulder as we watched an episode of Star Trek. Both James T. Kirk and Jake were always battling against impossible odds. As Jake would lay with his head on my shoulder I would contemplate how wonderful it was to be able to spend this amount of time with my son. I feared that it might only be for a short time, the fact that he was fighting a grade 4 glioblastoma never left my mind.
In the end, Jake was able to be surrounded by all the people he loved and who loved him. I am not really a very religious person but in the times after Jakes death I have had signs that Jake is now happy and well. Some signs completely unexplainable by logic. I have also been fortunate to visit a renown psychic medium and the experience has left me convinced that Jake is fine and that I will see him again one day. I believe it would be short sighted to think that there is only this life. Jakes life touched and continues to touch others. He has made change in people and the world. Given a choice, I would have rather that he taught people less and won this battle or never got sick at all but this is out of our hands.
I will always remember fondly our morning coffee and talks about life during Jakes treatment. You are a good friend and have taught me much. I hope to surprise you by walking into your office for some coffee someday. I hope that the Cytotron research continues to grow and help others and that someday I may be able to help with it in the United States.
Dan
I sent the following letter to Dr. Sibia to thank him and Dr. Kumar and to summarize my feelings:
Thank you for taking the time and perserverence to get some answers. I will look forward to Dr. Kumar's comments.
My feeling is still that Cytotron is an excellent therapy and we may have had better results if we had tried it first rather than last. It is unfortunate that it is not available in the United States at this time. Still with that being said, I believe that in order to combat a glioblastoma it will probably be necessary to be able to do greater coverage of the entire brain simultaneously due to the diseases tendency to spread.. I believe the areas we treated worked at least during treatment and that his eventual loss was due to tumor growth after treatment was stopped. If the machine was in the U.S. he could have continued treatment. It will be interesting to see where we are in 5 years with this technology. I suspect that the areas of simultaneous treatment coverage will be increased. I hope to see the machine in the U.S. one day.
I also believe I should have had him on hyperbarics during his U.S. and India treatment. I should have put him on oxygen during the trip home and stretched the days out so it was not so hard on him. In addition, I should have had a mask on him as he caught some type of fever in the airport. He never really recovered from the trip. I do not blame myself for these oversights. In the end, the disease probably just got the better of him. Unfortunately we were all forced to try to learn too quickly and make decisions with no experience. We never dreamed of having to make decisions like this when Jake got sick in 2006. Only time, research and experience will teach us how to battle this disease.
That being said, I will never forget my times in India. They were some of the most wonderful and most difficult times of my life. I am forever changed by the experience. My views on life and what is important have changed for the better, forever. It was very rewarding to see Jake's walking improve, watch him get some sensation back in his legs and just to spend so much time with him when he was not feeling effects of any chemotherapy. After treatment every day at 3pm we would lay on the bed in the hotel and Jake would rest his head on my shoulder as we watched an episode of Star Trek. Both James T. Kirk and Jake were always battling against impossible odds. As Jake would lay with his head on my shoulder I would contemplate how wonderful it was to be able to spend this amount of time with my son. I feared that it might only be for a short time, the fact that he was fighting a grade 4 glioblastoma never left my mind.
In the end, Jake was able to be surrounded by all the people he loved and who loved him. I am not really a very religious person but in the times after Jakes death I have had signs that Jake is now happy and well. Some signs completely unexplainable by logic. I have also been fortunate to visit a renown psychic medium and the experience has left me convinced that Jake is fine and that I will see him again one day. I believe it would be short sighted to think that there is only this life. Jakes life touched and continues to touch others. He has made change in people and the world. Given a choice, I would have rather that he taught people less and won this battle or never got sick at all but this is out of our hands.
I will always remember fondly our morning coffee and talks about life during Jakes treatment. You are a good friend and have taught me much. I hope to surprise you by walking into your office for some coffee someday. I hope that the Cytotron research continues to grow and help others and that someday I may be able to help with it in the United States.
Dan
Tuesday, April 28, 2009
Magical Tribute to Jake
We have put together a magic show with performers from the Hollywood Magic Castle as both a fundraiser to help pay medical bills and to send sick children from Rady Childrens Hospital to the event for free.
Everyone is invited. Helping other sick children feels good and would make Jake proud.
To see the flyer click here:
http://www.intelligentsolutions.tv/jakebenefitflyer.pdf
The address of La Costa Canyon High School, where the event is being held is:
1 Maverick Way
Carlsbad CA
The event will be held in the auditorium
Here is a link to the event via google maps:
http://www.mapquest.com/maps/map.adp?country=US&countryid=250&addtohistory=&address=1+Maverick+Way&city=Carlsbad&state=Ca&zipcode=92009&submit=Get+Map
Everyone is invited. Helping other sick children feels good and would make Jake proud.
To see the flyer click here:
http://www.intelligentsolutions.tv/jakebenefitflyer.pdf
The address of La Costa Canyon High School, where the event is being held is:
1 Maverick Way
Carlsbad CA
The event will be held in the auditorium
Here is a link to the event via google maps:
http://www.mapquest.com/maps/map.adp?country=US&countryid=250&addtohistory=&address=1+Maverick+Way&city=Carlsbad&state=Ca&zipcode=92009&submit=Get+Map
Friday, April 24, 2009
Not Doin' So Great
Having gotten through a great portion of Jakes room, I can see that eventually the task will end. I have removed about 3/4 of the things that identified Jake to me ie: his music and movies, clothes and some books but I still need to go through all of his writings and things from when he was a younger child. I am progressing fairly well in the re-organization of my life with things being completed that were on hold for the last couple of years. As I start to see an ending to this portion of my grieving I seem to actually have more saddness. Similiar to reaching the end of a book that you really enjoy. As sad as the ending is you still read to the very last page. Putting away Jakes things, although painfull is sort of like holding on and continuing to read a book when you already know the ending. There is that sad feeling of almost being done but in this case there is not another book to read next. I guess that is why it is called a chapter in our lives. There will be a time when I put away the last part of Jakes life and officially close the physical memories of his lifetime... close the read book so to speak, and that reality makes me sad. All that is left is to continue by creating new stories now about Jake ie: the "Relentless" book and trying to do things that carry on what he has given and taught all of us. I miss him. No matter how much I write about it I cannot explain in words how much I miss that boy.
Monday, April 20, 2009
On the train, On the road back
I am on the train back from San Luis Obispo after visiting my mom and my brother Jack. On the train by myself, yet another first and a memory of Jake and I going to the airport in Bangalore by train. Another realization of a time we had and can't have again. Interesting all that the human mind remembers. Songs come on the radio that I have not heard literally for years and I still remember the lyrics. I suppose everything is stored in our brain somewhere. Every moment of our life, every memory. Using this logic it appears that I will forever reminisce sadly and sometimes fondly of my life with Jake. There are probably hundreds more "first times" I will experience and emotionally deal with in the coming months and years. I have spent the last couple of months dealing with these feelings in several ways. One thing I have been doing is re-organizing my house and completing tasks that went on hold back in November of 2006 when Jake started having symptoms. Initially my first goal was to rid the house of every possible memory of cancer, from syringes to medicines. Even clothing he wore when he got sick. The next chore and truly the most difficult since the funeral has been deciding what to keep. Our good friend Michelle has decided to make both Marci and I quilts from some of Jakes favorite shirts. That took care of the clothes but there are still so many items to consider from music to books, childhood trophies and toys. It is a long painfull process and only something I can do a little at a time. I will hope that I can find mostly joy in memories of these items one day instead of sorrow at what is gone for now.
I have decided now to force myself to be more driven at getting myself out of this slump. One way I am going to do this is by starting my book, the title now changed from "Saving Jake" to "Relentless" a title that speaks to the manner in which this cancer spreads and also to the way Jake decided to fight this disease, with a positive outlook and humor.
The second thing I am going to do is become more focused at work. The economy has not been helpful in this regard but I will succeed through determination.
Lastly, I will continue to try and grow my connection with my other children who were put virtually "On Hold" for two years when Jake got sick. I realize my mourning is not over and to a degree never will be but as I have said before, Jake would think less of me if I did not set a good example as he did on how to live and survive in the face of adversity.
As my good friend Marshall has told me in the past, "As bad as things are they can always get worse". I have several things to be thankful for.
1. Jake was not taken by a drunk driver or kidnapped by another person. As Jake always said "Cancer is not prejudice and it has no conscience, it gets who it gets"
I would have a much more difficult time if his death was caused by another person rather than an unnamed killer.
2. Jake was luckier than many children we saw over the last couple of years at Childrens Hospital. Many died at birth or shortly thereafter. It was not uncommon to see 1 and 2 year olds in make-shift wagons being pulled by a nurse down hospital corridors with infusion pumps connected to their body. Jake and I would look at each other during these times and as was normal for us, speak without speaking. We both knew that he was luckier than many.
3. At least 18 of Jakes 20 years were very happy. The last two years of his life although difficult had many good times as Jake got close to all of his relatives and many people he never had met before.
4. Jake changed the lives of many, promoted awareness for new types of cancer therapy and showed so many what is important in life. To this day I find pictures of him in many locations, from family to friends. I am told constantly that when life is getting them down, they look at Jakes picture and remember how to deal with adversity.
I have decided now to force myself to be more driven at getting myself out of this slump. One way I am going to do this is by starting my book, the title now changed from "Saving Jake" to "Relentless" a title that speaks to the manner in which this cancer spreads and also to the way Jake decided to fight this disease, with a positive outlook and humor.
The second thing I am going to do is become more focused at work. The economy has not been helpful in this regard but I will succeed through determination.
Lastly, I will continue to try and grow my connection with my other children who were put virtually "On Hold" for two years when Jake got sick. I realize my mourning is not over and to a degree never will be but as I have said before, Jake would think less of me if I did not set a good example as he did on how to live and survive in the face of adversity.
As my good friend Marshall has told me in the past, "As bad as things are they can always get worse". I have several things to be thankful for.
1. Jake was not taken by a drunk driver or kidnapped by another person. As Jake always said "Cancer is not prejudice and it has no conscience, it gets who it gets"
I would have a much more difficult time if his death was caused by another person rather than an unnamed killer.
2. Jake was luckier than many children we saw over the last couple of years at Childrens Hospital. Many died at birth or shortly thereafter. It was not uncommon to see 1 and 2 year olds in make-shift wagons being pulled by a nurse down hospital corridors with infusion pumps connected to their body. Jake and I would look at each other during these times and as was normal for us, speak without speaking. We both knew that he was luckier than many.
3. At least 18 of Jakes 20 years were very happy. The last two years of his life although difficult had many good times as Jake got close to all of his relatives and many people he never had met before.
4. Jake changed the lives of many, promoted awareness for new types of cancer therapy and showed so many what is important in life. To this day I find pictures of him in many locations, from family to friends. I am told constantly that when life is getting them down, they look at Jakes picture and remember how to deal with adversity.
Friday, April 17, 2009
Long Emotional Days Part 2
On the subject of long emotional days and the multiple layers involved in mourning there are significant areas that seem to be much more difficult then others and some that are guaranteed to be terrible. Such was yesterday when I began the sad sad process of moving some things out of Jakes room and into mine to make room for a new roomate that will be coming aboard in June. My niece Teresa will be moving into Jake's room and Sharissa (the new roomate) into hers. It did not help that I let my anti-anxiety medicine run out. Sufficed to say I became a complete basket case as I began to move things out of Jakes room and into mine. Part of it was the confirmation that Jake was gone and his room would no longer belong to him. Another part was seeing all the music and movies he had bought and set up meticulously along with other articles that defined his identity. After moving several items of Jakes we have decided to keep into my room and watching as simultaneously Jakes room became less Jakes room and more of a generic room my sadness increased. Such a statement of the end of his life on this Earth. I began looking at some of the movies he had collected over the last few years. Movies that most people would not even watch but movies that Jake found meaning and laughter with. I looked back on how every day Jake and I would go to the book or cd store or out to lunch. Jake got anything he wanted in those last couple of years. From books to cd's to lunches. The result, his physical legacy now partially in my room and his and I walked over to Pam's house my neighbor and collappsed on the bed (for the upteenth) time crying hysterically. I explained to her that I did not know if I would be able to stand seeing his things every day without being sad. I thought I might have to pack it all up till such a time as my heart has at least partially healed over. I felt it would be a mistake to jump to any quick decisions.
After the cry as usual I felt better and when I went back home I saw the possibility that I may be able to get myself to a point where I can see only the positive things about Jakes earthly goods and not concentrate on the negative. For now, that is what I will try to do. I am not sure what this blog entry does for anyone. Perhaps it is a guide for what to expect so that you are not blindsighted should a disaster occur. Even though I seem to have outlined many of the major feelings and situations one is liable to go through, there as still many more left that I do not even know about. It is hard to conceive that I may one day be fairly recovered from this. It is difficult to define recovered in this case. As for Jake, when I get this sad, I think of him up there laughing at me and when my time comes one day I know that when he greets me it will not be with him running to me excitedly and giving me a big hug. No, I expect that the first thing he will say to me as he stands there calmly with a mischevious smile on his face is "Well, how much did you miss me?" Then when I want to run to him and give him a hug, I will hear him say.."Wait! First you have to say hello to Indy" (his dog)..."Look at him!"
After the cry as usual I felt better and when I went back home I saw the possibility that I may be able to get myself to a point where I can see only the positive things about Jakes earthly goods and not concentrate on the negative. For now, that is what I will try to do. I am not sure what this blog entry does for anyone. Perhaps it is a guide for what to expect so that you are not blindsighted should a disaster occur. Even though I seem to have outlined many of the major feelings and situations one is liable to go through, there as still many more left that I do not even know about. It is hard to conceive that I may one day be fairly recovered from this. It is difficult to define recovered in this case. As for Jake, when I get this sad, I think of him up there laughing at me and when my time comes one day I know that when he greets me it will not be with him running to me excitedly and giving me a big hug. No, I expect that the first thing he will say to me as he stands there calmly with a mischevious smile on his face is "Well, how much did you miss me?" Then when I want to run to him and give him a hug, I will hear him say.."Wait! First you have to say hello to Indy" (his dog)..."Look at him!"
Thursday, April 16, 2009
Long Emotional Days Part 1
I am continually surprised at how I inaccurately assume where I am at in the mourning process. It seems that usually when I state it is getting easier the next day or hour it becomes much more difficult. Mourning the loss of your child has many layers that are not readily apparent. Some days I assume it will be a terrible day and then I am proven wrong and it is just fine. Other days that I think will feel great are horrible. Take the last couple days... Yesterday, I decided to stop by Childrens Hospital as I had not been there since Jake died. I anticipated that it would be a very difficult thing to do as most of my previous visits were with Jake while he was alive. I went however into the building and found myself doing very well. I was stopped several times by doctors, nurses and other staff members who had helped during the course of his disease. Everyone gave me hugs and told me how much Jake meant to them and how his life brought so much joy and laughter to their day. I felt that Jake was still with me (which I suppose is possible because before I got out of the car I said "Jake, you better be right by my side during this!") The visit went well including a session with the staff psychologist as we reminisced and talked about Jake. After the session, I had a final lunch meal at the cafeteria where I had gone so many times in the last few years when Jake was in treatment. It was odd to know that this would probably be my last meal at that location. I no longer have children under the age of 18. Like the last day of school I looked back on the last two years with some fondness, lots of sadness and still a sense of disbelief of what we actually went through in the last two years. Looking around the cafeteria and the receptionist areas I saw some parents that were just starting treatment for their sick child and felt sorry for the long road that was just about to begin for them.
My last stop for the day was the San Diego Hyperbaric facility to return a chair I had borrowed to assist in helping Jake get around. This journey was very sad as I walked into the office for the first time without Jake. The size of the office was of course much smaller than the hospital and as I walked out the door for the last time I paused by my car to look up at the sky and once again ponder the idea that this was all real and actually happening.
My last stop for the day was the San Diego Hyperbaric facility to return a chair I had borrowed to assist in helping Jake get around. This journey was very sad as I walked into the office for the first time without Jake. The size of the office was of course much smaller than the hospital and as I walked out the door for the last time I paused by my car to look up at the sky and once again ponder the idea that this was all real and actually happening.
Wednesday, April 8, 2009
Hello World
I have not fallen off the face of the earth. I seem to be doing a little better, accent on little. I still have an impossible time really accepting the truth, and I probably never will. At least a few times a day I stare at a picture of Jake, maybe one on the refrigerator or in a frame on the wall. Sometimes I will see a file or directory on my computer while I am looking for something else. Then I just sit there for a moment and contemplate the fact that I really have lost Jake. The Laurel to my Hardy, one of my most precious friends. To realize again and again that he actually is gone is so sad and I find myself saying "This is just unbelievable and so wrong." I still do not seem to be able to go through more than 2 or three days between crying and breakdowns but they slowly seem to get a little further in between and I still feel like I am walking around in a daze.
On a more positive note, I was fortunate to spend an hour with a prominent psychic medium last week. I am sure this is a controversial subject and I have my own set of doubts and questions. However, after speaking with this person who seems to be able to talk to people on the "Other Side" I found myself more comforted than before and more confident that Jake actually is ok, just somewhere else. It was not so much any concrete facts or realizations (even though there were quite a few) but more in how the medium talked about Jake and his sense of humor and personality even though she had never met him. In the end, as I say, I believe he is happy, healthy, learning and having fun now. I believe I will see him one day and we will all be happy again. Unfortunately the struggle now is to be happy until then and it is a struggle. I have heard so many talk about how they hate their birthdays and are sad to be another year older. Each time I hear this I think about Jake and want to remind them that to grow older is better than the alternative. Fortunately for most, the loss of a child is not something they can wrap their heads around and something I hope they never have to deal with. Every day we are on this earth is a gift.
I am in the process of re-inventing myself after having lost so much in the last 3 years. I have applied to several companies for various possible positions and am re-building my computer business. Not sure how long it will take. It has been a long drop from being a homeowner with 2 companies to where I am now. I miss my theatre but I am happy to be in a home with heat and basic comforts.
On a more positive note, I was fortunate to spend an hour with a prominent psychic medium last week. I am sure this is a controversial subject and I have my own set of doubts and questions. However, after speaking with this person who seems to be able to talk to people on the "Other Side" I found myself more comforted than before and more confident that Jake actually is ok, just somewhere else. It was not so much any concrete facts or realizations (even though there were quite a few) but more in how the medium talked about Jake and his sense of humor and personality even though she had never met him. In the end, as I say, I believe he is happy, healthy, learning and having fun now. I believe I will see him one day and we will all be happy again. Unfortunately the struggle now is to be happy until then and it is a struggle. I have heard so many talk about how they hate their birthdays and are sad to be another year older. Each time I hear this I think about Jake and want to remind them that to grow older is better than the alternative. Fortunately for most, the loss of a child is not something they can wrap their heads around and something I hope they never have to deal with. Every day we are on this earth is a gift.
I am in the process of re-inventing myself after having lost so much in the last 3 years. I have applied to several companies for various possible positions and am re-building my computer business. Not sure how long it will take. It has been a long drop from being a homeowner with 2 companies to where I am now. I miss my theatre but I am happy to be in a home with heat and basic comforts.
Tuesday, March 10, 2009
Thought For The Day
Well, yesterday was 2 months since Jakes passing and my fingers start to shake with sadness even as I type these words. In general, I am handling things a little better realizing I will never really feel right again. I still think about Jake almost all day and marvel at the uncomprehensible reality that he is really not here and will not be. I think however of the children at Radys Childrens hospital, some born there who will never see the outside and Jake who by contrast had a good 20 years, 18 of them being great. Things can always be worse. Sometimes I wonder if it is true that you leave here when you have accomplished what you need to do and learn. Perhaps Jake finished this early.
A friend of mine told me this saying which I thought was fairly profound:
"When we are born we cry and everyone around us is happy, When we die everyone around us cry's but we are happy."
I hope this is so.
A friend of mine told me this saying which I thought was fairly profound:
"When we are born we cry and everyone around us is happy, When we die everyone around us cry's but we are happy."
I hope this is so.
Thursday, March 5, 2009
LIVE Through It... Don't Just Survive It.
The topic of the day today was..guess what... Jake. I was talking to Marshall about Jake (Marshall calls me at least once a day) We talked again about how hard it is to come to terms with the reality of not seeing Jake again. The reality that he is no longer on this Earth and how hard that is to cope with. We talked again about the fact that you never get over it but simply survive it. However somewhere in the conversation I decided that rather than survive it, I need to LIVE through it. Meaning LIVE my life which is so precious. I really don't want to simply survive it. That is not much of a tribute to Jake who never complained and fought so hard against this devastating illness and yet always kept a smile on his face. I need to LIVE life for my and Jakes sake.
I went to my first grief group session tonight. I was not expecting miracles and did not get any. I did however get a sense of comradery being around others who lost their child. There were not really many answers just a sort of family or familiarity feeling. It was interesting to see that even some parents going on their 17th year of loss still have moments of utter sadness. This is something that will be with me for a lifetime but I will try and make my lifetime as nice as possible if for nothing else to honor Jake.
I went to my first grief group session tonight. I was not expecting miracles and did not get any. I did however get a sense of comradery being around others who lost their child. There were not really many answers just a sort of family or familiarity feeling. It was interesting to see that even some parents going on their 17th year of loss still have moments of utter sadness. This is something that will be with me for a lifetime but I will try and make my lifetime as nice as possible if for nothing else to honor Jake.
Tuesday, March 3, 2009
Another Day
Another day. That is what it seems like most of the time. Another day in a string of non-descript days. I am doing a little better now or so it seems. I tend to break down now about every 3 days instead of 2. I never know when it will hit me. The only think I know is that it will be when I least expect it. I will start to feel strange and nervous and by the time I figure it out, it is usually too late. Today was one of those days. Sitting eating dinner next door and I felt the feeling. I was not sure what it was for a while and then when I figured it out I went over to my house to take my daily anti-anxiety medicine. As I stood in the bathroom and took the cap off the bottle of medicine I looked in the mirror and said to myself "Yep, another day". Then I laid down on the bed did a little crying and waited for it to pass. It took about a half hour and I felt better. Funny how crying helps. Another day done, now to sleep to start the next one. I am going to a grief group on Wednesday night. Hopefully that will help. Never thought I would be going to a support group on a Wednesday night. Seems more like a bowling night. Oh well, another day tomorrow.
Tuesday, February 24, 2009
Again
Hit from behind again. I have been feeling better and almost feeling guilty about it. Little by little it has become slightly easier to walk by his room and to see pictures. Then listening to my voicemail messages of many people that called to wish me happy birthday I up came the message from Jake that I had saved. Wasn't expecting it and although I will never delete it (it is also on the video I made) I was hit with the shocking sadness that I will not see my son in this life ever again. I was talking to Kate my Dads wife and my stepmom yesterday. Kate also lost her daughter over 25 years ago. She told me and I agree that the hardest thing is the continual realization that they are physically gone from this world and you cannot see them again in this life. You try to think of them as off to school or camp or on vacation but that reality of their death keeps hitting you and it is shockingly sad. Even after the many years since Elaine, Kates daughter died of cancer she still even now suffers the loss and misses her from time to time. I guess I am in for a long haul. Everyone thinks I am doing so well but sometimes I wonder if I am just a good writer. I miss my little Jake.
Sunday, February 22, 2009
Todays Lesson: Birthdays and Holidays
Today was a interesting day. My 52nd birthday. I had been thinking about it off and on during the course of the last couple of weeks. Many people had called to see what I wanted to do. Family talked about party's or some type of special event to try and make it as much fun as possible. People are so nice and caring. I received many calls during the course of the week and today. While I am certain that many were concerned what it would be like to have my first birthday without one of my children and so close to that sad day when Jake left us, many may have forgotten or were not aware that Jake was actually officially diagnosed with Glioblastoma Multiforme Grade IV on the day of my 50th birthday now 2 years ago today. Until January 9th at 2:40PM of this year when Jake left us, my 50th birthday stood out as the worst birthday and the worst day of my life. On the other hand, the stress of turning 50 was completely lost on me on that day as the news of Jakes sickness had made me understand that 50 is simply a number and one we should be happy to reach rather than dread. I now look at birthdays as presents in their own rights just as I do each day that I am on this earth. My birthday will always carry mixed feelings for the rest of my life as will each and every holiday that will occur during the course of this and subsequent years. Losing Jake has grounded me in what is important and although I feel I was always fairly well grounded in what matters, there is no question now. It is of course health, family, friends and pets and that is it.
As I climb out of my emotional and financial hole and continue on the ride of life that took such a severe and awkward turn 2 years ago on this day, I realize that I will never have the same amount of motivation for the transient things of this world. True, I will look forward to emotional and financial stability, but the dreams of the house, nice car and such will never carry the same amount of weight. Holidays and birthdays will probably always be difficult but my motivation to do more than just get through them will be Jake. I think about him up in heaven or wherever he is. I think about his bravery and the smile that never left his face during the 26 months that he was sick and I will continue to try and make him proud. I equate the holidays and birthdays as sort of the "Our Song" that one has with a girlfriend or wife. That familiar tune that can bring sadness and a rush of memories when it comes on the radio and you are reminded that "That was our song." Choices, always choices as to how we deal with things that haunt and try to destroy us when we hear or relive the song. For me, I remember a particular time in my 20's when I had a shocking breakup with a serious girlfriend. I walked to the car that morning after discovering events that had been happening for months. As I drove away with tears in my eyes, one of my favorite Frank Sinatra medlies "Angel Eyes/Gal That Got away " came on the cd player with these and more poignant lyrics:
"Try to think that love’s not around
Still it’s uncomfortably near
My poor old heart ain’t gaining any ground
Because my angel eyes ain’t here"
"The night is bitter
The stars have lost their glitter
The winds grow colder
Suddenly you’re a lot older"
The road gets rougher
It's lonelier and it's tougher
With hope you burn up
Tomorrow maybe she'll turn up
There ain't no let up the live long night, the night and day...
As I listened to the song now some 20 years ago, I had thought "Great! now every time I hear this song I am going to remember this time and be sad. This sucks!"
Then something happened. I decided to play the song over and over. I did it perhaps 10 or more times and sang it as loud as I could because I decided that no girl or romance would ruin one of my favorite songs. My idea worked and after playing it over and over again it remained and still remains one of my favorite songs. I did not let the circumstances of the situation ruin my love for life, for "The Song".
Of course losing Jake is much more devastating than the loss of a relationship. In fact, I do not believe there can be anything more difficult than losing a child. If there was such thing as an evil force out there that was trying to destroy me, they picked the absolute worst thing that anyone could think of. However like the song 20 years ago, I promise for my sake, my children's sake and to make Jake as proud as he made me, to never give up and and die emotionally. To do this is disrespectful to Jake who never complained and always smiled all the way to the end. Although he would never really be mad at me, he would be looking down at me with a confused look thinking "What are you doing???" I will continue to make Jake and the rest of my family as proud as I can by celebrating his life and showing all that you do not quit. One day at a time, one holiday at a time for the rest of my life.
As I climb out of my emotional and financial hole and continue on the ride of life that took such a severe and awkward turn 2 years ago on this day, I realize that I will never have the same amount of motivation for the transient things of this world. True, I will look forward to emotional and financial stability, but the dreams of the house, nice car and such will never carry the same amount of weight. Holidays and birthdays will probably always be difficult but my motivation to do more than just get through them will be Jake. I think about him up in heaven or wherever he is. I think about his bravery and the smile that never left his face during the 26 months that he was sick and I will continue to try and make him proud. I equate the holidays and birthdays as sort of the "Our Song" that one has with a girlfriend or wife. That familiar tune that can bring sadness and a rush of memories when it comes on the radio and you are reminded that "That was our song." Choices, always choices as to how we deal with things that haunt and try to destroy us when we hear or relive the song. For me, I remember a particular time in my 20's when I had a shocking breakup with a serious girlfriend. I walked to the car that morning after discovering events that had been happening for months. As I drove away with tears in my eyes, one of my favorite Frank Sinatra medlies "Angel Eyes/Gal That Got away " came on the cd player with these and more poignant lyrics:
"Try to think that love’s not around
Still it’s uncomfortably near
My poor old heart ain’t gaining any ground
Because my angel eyes ain’t here"
"The night is bitter
The stars have lost their glitter
The winds grow colder
Suddenly you’re a lot older"
The road gets rougher
It's lonelier and it's tougher
With hope you burn up
Tomorrow maybe she'll turn up
There ain't no let up the live long night, the night and day...
As I listened to the song now some 20 years ago, I had thought "Great! now every time I hear this song I am going to remember this time and be sad. This sucks!"
Then something happened. I decided to play the song over and over. I did it perhaps 10 or more times and sang it as loud as I could because I decided that no girl or romance would ruin one of my favorite songs. My idea worked and after playing it over and over again it remained and still remains one of my favorite songs. I did not let the circumstances of the situation ruin my love for life, for "The Song".
Of course losing Jake is much more devastating than the loss of a relationship. In fact, I do not believe there can be anything more difficult than losing a child. If there was such thing as an evil force out there that was trying to destroy me, they picked the absolute worst thing that anyone could think of. However like the song 20 years ago, I promise for my sake, my children's sake and to make Jake as proud as he made me, to never give up and and die emotionally. To do this is disrespectful to Jake who never complained and always smiled all the way to the end. Although he would never really be mad at me, he would be looking down at me with a confused look thinking "What are you doing???" I will continue to make Jake and the rest of my family as proud as I can by celebrating his life and showing all that you do not quit. One day at a time, one holiday at a time for the rest of my life.
Wednesday, February 18, 2009
The Long Haul
In this journey, I guess it is important to document my feelings as I go through this next phase of my life without Jake. I hope this will be helpful for others. I would not wish it this experience on anyone but some may have to face a similiar situation some day.
I am writing this while sitting at the airport waiting to leave for Phoenix to do some computer work. Once again I was caught by surprise when I walked into the airport and realized that the last time I was in an airport was with Jake. Once again I felt the familiar wash of panic and sorrow when I realized where I was. Another memory of Jake and I and now just I, that is under my belt. I am not too sure how many more of these there will be I only know that they will come as a surprise.
I am working more now although it seems strange to not be checking on Jake every few moments. I am in the process of re-inventing my life after being a caretaker for the last 2 years. I walk around the house a lot in a fog but as the days go by I seem to get more work done than the day before and have longer times in between the sorrow. Still, when I reflect on the fact that I am doing a little better I begin to think about the fact that he really is gone and that reality hits me hard. If there is one consolation in all of this, I no longer have any fear of dying as I believe I will see him then. Don't let this make you think that I am suicidal, I am not. There is just some type of comfort knowing I will see him again one day.
I am writing this while sitting at the airport waiting to leave for Phoenix to do some computer work. Once again I was caught by surprise when I walked into the airport and realized that the last time I was in an airport was with Jake. Once again I felt the familiar wash of panic and sorrow when I realized where I was. Another memory of Jake and I and now just I, that is under my belt. I am not too sure how many more of these there will be I only know that they will come as a surprise.
I am working more now although it seems strange to not be checking on Jake every few moments. I am in the process of re-inventing my life after being a caretaker for the last 2 years. I walk around the house a lot in a fog but as the days go by I seem to get more work done than the day before and have longer times in between the sorrow. Still, when I reflect on the fact that I am doing a little better I begin to think about the fact that he really is gone and that reality hits me hard. If there is one consolation in all of this, I no longer have any fear of dying as I believe I will see him then. Don't let this make you think that I am suicidal, I am not. There is just some type of comfort knowing I will see him again one day.
Sunday, February 8, 2009
February 8th 2009
It is the evening of the 8th and one day before the 1 month anniversary of Jakes passing. Even typing that sentence sends a shot of deep sadness through my body. I left town for 5 days at the end of January to try and get a change of scenery and thoughts. I went to Santa Cruz for 2 days and then to San Luis Obispo to visit my brother Jack. The trip was nice but was filled with memories of Jake that hit me unexpectedly from behind. I have decided that the hardest thing to get through are these instant reminders that you are not ready for. The first one occured when I was bringing my bags to bring to the hotel. As I wheeled the bags toward the counter I felt my heart racing. A aura of panic began to wash over me. It was not until I checked into the hotel and layed on the bed when I realized that the last hotel I stayed in was with Jake in India. The episode lasted about 30 minutes and I cryed like a baby. Afterward, I felt better, somehow the tears seemed to release the tension and stress in my body. I had a couple more episodes during the rest of the trip but less in severity. I expect it will take a long time to be fully functional again. It seems that I get about 1 minute better each day and have some type of breakdown every few days. I continue to try and remain productive and succeed most of the time. Other times I just think of excuses to leave the house to break the monotony. I think it is important to perservere while still experiencing these feelings. I try to remember that Jake was so strong and positive during his illness and he would want us all to be happy and do the same. For us to fail in this would be to let Jake down to an extent. I am sure if he could talk to me now he would tell me to stop acting silly and enjoy life like he did even at the worst of times. He is a tough act to follow.
Wednesday, January 28, 2009
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
http://www.intelligentsolutions.tv/pastelfamily/jake/jakefuneralprogram.pdf
Wednesday, January 21, 2009
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 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.
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.
Tuesday, January 20, 2009
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.
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.
Sunday, January 18, 2009
Friday, January 16, 2009
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.
Wednesday, January 14, 2009
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.
Tuesday, January 13, 2009
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.
We are having a bonfire for Jake tuesday at Moonlight beach at 4;30pm for anybody who would like to come.
Monday, January 12, 2009
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
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
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.
Friday, January 9, 2009
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.
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
My friend Jamie put it best when he told me "This is a real Shit sandwich
Thursday, January 8, 2009
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.
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.
Wednesday, January 7, 2009
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.
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
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.
"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.
Monday, January 5, 2009
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.
Sunday, January 4, 2009
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.
Saturday, January 3, 2009
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.
Friday, January 2, 2009
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.
Thursday, January 1, 2009
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.
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.
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