Day 155
I guess I must have been more tired than I thought, since it is now Sunday morning and I'm just now sitting down again to post. The past two days have been busy ones, filled with what passes these days for "normal" life. They have been good days. John is comfortable walking a mile or more and has found a few comic and music stores that fit his tastes. He does miss his friends, but he is able to stay in contact pretty well through instant messaging.
Earlier in the week, a friend, whom I'll call Ted because that is his real name, said that the board of a corporate counsel group I've been a part of wanted to do something for John. I've resisted offers of charity for the most part since all this with John started for the reasons you might expect and more than a few others. Certainly there is that touch of pride, but it has had a lot more to do with being overwhelmed with the outpouring of kindness and not knowing what to say.
Our physical needs have been remarkably few and the flexibility we have needed in our jobs and in being able to travel has been given without condition. Other than having a donor and being able to receive a transplant here, that freedom has been our greatest gift. Sometimes though, the many "small" things have been particularly helpful. A ride to the airport, keeping the yard, the gift of a car (not so small), housesitting (priceless), each and all matter more than we can say thanks for. Pretty much every day, we receive a call, email or letter from someone saying he or she is thinking of us. Each is a breath of air, and sometimes seemingly little things have made a big diference, all of which takes me back to Ted.
John has at least one of nearly every video game system ever sold, but he hadn't purchased the newest Sony PlayStation Portable that came out recently. The "study" of video games is an academic pursuit for John and not just a time filler, but even then they are a good way to fill weeks of time in semi-isolation. This time, perhaps because Ted is too good and giving a person to say no to, I mentioned the new game system.
Friday morning, it arrived in a box. John got up while I was eating breakfast, found it and was really overwhelmed. That kind of kindness can't be taken for granted. His spirits have been the best I've seen them in a long time since then.
Having said that, if anyone out there feels moved to send John more games or the like, remember that one can have too much of a good thing and there is only so much dragon bashing and skateboard crashing that a parent can take.
With so much time on his hands, John has been expanding his web world to include a new comic and a new host page for his websites. You can find it at http://www.angelfire.com/comics/ihatethisgame/main.html.
I think the underlying purpose for the page is to raise money for John to buy a Vespa, which is a small motorcycle. This is pretty clearly a sign that all the drugs he has had to take have taken over his mind. I did, however, donate $1 to his fund, mostly to see if it really worked. Unfortunately, it did. Why is it that children seem to end up doing the same stupid things their parents did? If it doesn't make you question evolution, it certainly proves there is no intelligent life on this planet.
For 24 hours on Saturday, John participated in an internet comicathon, where thousands of virtual Charles Shultz types conceive, draw and complete 24 page comics. They are then published online. I will get the site, and post it, although I'm sure he will post it on his sites. It took as much energy and effort as writing a term paper in 24 hours, although, of couse, I've never done anything like that.
Debbie flew home last night for a couple of weeks of work and work-related travel. Becoming a step-parent was a breeze for her compared to the roller coaster car that our family has been riding. There isn't any way to describe what a help she has been.
This week begins the lead up to the process of killing off John's bone marrow and the transplant, which still looks like it will take place around May 5. Tuesday of this week, John has his "port" tubes removed from his arm and replaced with a "Hickman" line in his chest. It is all "minor" surgery, but it is too weird to describe. If you want to know more, you can research it on the Internet or watch a Star Trek movie about the "Borg."
On a personal note, late Friday John had time off and work quieted down, so Debbie and I went down the hill to Lake Union, rented an old wooden sloop and spent a little time sailing. The lake is the home of the Center for Wooden Boats and is a mini-version of Mystic Seaport. They publish the magazine "Wooden Boat" from the Center, have a nice collection of small wooden sailboats and build and maintain others. Web Chiles wrote that "a sailor is an artist whose medium is the wind." It was good to brush the waters for a time.
Earlier in the week, a friend, whom I'll call Ted because that is his real name, said that the board of a corporate counsel group I've been a part of wanted to do something for John. I've resisted offers of charity for the most part since all this with John started for the reasons you might expect and more than a few others. Certainly there is that touch of pride, but it has had a lot more to do with being overwhelmed with the outpouring of kindness and not knowing what to say.
Our physical needs have been remarkably few and the flexibility we have needed in our jobs and in being able to travel has been given without condition. Other than having a donor and being able to receive a transplant here, that freedom has been our greatest gift. Sometimes though, the many "small" things have been particularly helpful. A ride to the airport, keeping the yard, the gift of a car (not so small), housesitting (priceless), each and all matter more than we can say thanks for. Pretty much every day, we receive a call, email or letter from someone saying he or she is thinking of us. Each is a breath of air, and sometimes seemingly little things have made a big diference, all of which takes me back to Ted.
John has at least one of nearly every video game system ever sold, but he hadn't purchased the newest Sony PlayStation Portable that came out recently. The "study" of video games is an academic pursuit for John and not just a time filler, but even then they are a good way to fill weeks of time in semi-isolation. This time, perhaps because Ted is too good and giving a person to say no to, I mentioned the new game system.
Friday morning, it arrived in a box. John got up while I was eating breakfast, found it and was really overwhelmed. That kind of kindness can't be taken for granted. His spirits have been the best I've seen them in a long time since then.
Having said that, if anyone out there feels moved to send John more games or the like, remember that one can have too much of a good thing and there is only so much dragon bashing and skateboard crashing that a parent can take.
With so much time on his hands, John has been expanding his web world to include a new comic and a new host page for his websites. You can find it at http://www.angelfire.com/comics/ihatethisgame/main.html.
I think the underlying purpose for the page is to raise money for John to buy a Vespa, which is a small motorcycle. This is pretty clearly a sign that all the drugs he has had to take have taken over his mind. I did, however, donate $1 to his fund, mostly to see if it really worked. Unfortunately, it did. Why is it that children seem to end up doing the same stupid things their parents did? If it doesn't make you question evolution, it certainly proves there is no intelligent life on this planet.
For 24 hours on Saturday, John participated in an internet comicathon, where thousands of virtual Charles Shultz types conceive, draw and complete 24 page comics. They are then published online. I will get the site, and post it, although I'm sure he will post it on his sites. It took as much energy and effort as writing a term paper in 24 hours, although, of couse, I've never done anything like that.
Debbie flew home last night for a couple of weeks of work and work-related travel. Becoming a step-parent was a breeze for her compared to the roller coaster car that our family has been riding. There isn't any way to describe what a help she has been.
This week begins the lead up to the process of killing off John's bone marrow and the transplant, which still looks like it will take place around May 5. Tuesday of this week, John has his "port" tubes removed from his arm and replaced with a "Hickman" line in his chest. It is all "minor" surgery, but it is too weird to describe. If you want to know more, you can research it on the Internet or watch a Star Trek movie about the "Borg."
On a personal note, late Friday John had time off and work quieted down, so Debbie and I went down the hill to Lake Union, rented an old wooden sloop and spent a little time sailing. The lake is the home of the Center for Wooden Boats and is a mini-version of Mystic Seaport. They publish the magazine "Wooden Boat" from the Center, have a nice collection of small wooden sailboats and build and maintain others. Web Chiles wrote that "a sailor is an artist whose medium is the wind." It was good to brush the waters for a time.
