Saturday, January 24, 2009

Our Friends

We are approaching the 7 months since Tyler went into remission. The scans get further apart as we move to the next big milestone...5 more months to the magical "cured" date. In fighting cancer, every day should be a celebration. Much like the marathon, mile passed is a victory. Each round of chemo, every radiation, every surgery completed...they are all victories. These victories are getting easier now. Not long ago they were much harder. There were times when just surviving to the next day was a victory. Easy or hard, every day is cause for celebration. I guess there is a lesson for all of us there.

While in the hospital, Tyler asked if I would give him a beer when he was done with treatments and meds. Absolutely! It's a celebration. He has earned it. I realize some might disagree with me on the beer issue. A person church heard me talking about some friends that came to the hospital and took me out for a drink. She said, "I hope this doesn't cause a problem, but we do not encourage the use of alcohol." I said, "It's no problem at all. I really don't need any encouragement to use alcohol. I do just fine on my own." I thought it was really funny. Apparently she did not.

These kids show an incredible about of courage and strength as they fight for a normal life. This battle with cancer is very long and frustrating. For me, one of the worst parts is the fact that there is no clear victory line. Success is only realized well after the fact, after long months or years of remission. More often than not, doctors disagree while looking at identical scans. Even the wonderful goal of "remission" simply means no clear and obvious indications of cancer. And "Cured" means you have been in remission past the date that most relapses occur.
As you leave J-5, the tests and scans get further apart. You live your life and go back to normal. But the memory of J-5 rushes back with every cough, fever, bruise, or stomach ache. And you count the days-months-years to some mystical date called "cured". For most childhood cancers, that date is after 4-6 years of remission. We are fortunate that the window is shorter for the most aggressive cancers. With Burkitt's, most relapses happen with 6 months of remission, and are very rare after 12 months. Tyler is at 7 months now.

The really exciting news about Tyler is that everything is really going very good. The long term side effects are rapidly diminishing. The predicted after-effects of the high dose chemo (memory loss, headaches, nerve damage, inability to focus) have never occurred. He is playing basketball, hanging with friends, and getting great grades in school. His recovery, although not without issue, has truly been a miracle. He is moving on, leaving cancer far behind.

As we celebrate Tyler's health, we continue to remember all our friends. Cancer is still alive and well. It continues to attack and destroy lives. It is heart breaking to see these young people beat this monster down, only to have it return again and again. Parents hug their children, look them in the eyes, and send them back into treatments from Hell to fight again. That fear is always just below the surface. Please continue to keep them in your thoughts. Keep them in your prayers. Look into their eyes and understand the dreams they have. Understand their desire to live. Understand that all they ask for is to be normal.
A healthy child has many wishes. A child with cancer has only one.
It has been said that prayer does not change things. Rather prayer changes the hearts of people, and those people change things. I think it might be a little of both. Please keep these young people in your prayers.

Then you will call, and the Lord will answer;
you will cry for help, and He will say: Here am I.
--Isaiah 58:9
We got to know Mason and his family on J-5. He received his brothers bone marrow last January after he had relapsed. After a long battle, Mason was in full remission. Recently mason became very ill. It now appears the cancer may be back, this time in his central nervous system. Mason is now back on J-5. Please keep him in your prayers.

Matthew is also a friend from J-5. Matthew relapsed a couple of weeks ago, just as the family was preparing to leave on their Make-A-Wish trip to Disney World. For Matthew, the family decided to proceed with the Disney trip and begin treatments immediately upon their return. But it soon became clear he was not going to be able to handle the trip. They returned to Ohio, and Matthew is back in treatments. He is having a lot of difficulties right now. Please keep him in your prayers.

Ryan is an incredible young man. He made the news again today. We have really enjoyed getting to know him and his family. Ryan continues to fight cancer with all he has. He was taken back to Children's as his temperature shot up and his blood counts collapsed, but is now back home. Please keep him in your prayers.

Mason has received his bone marrow transplant after his Burkitt's relapsed. I do not know how many of you have witnessed a young person going through the transplant recovery. It is truly a treatment that takes them to Hell and back. Mason received his bone marrow from his brother, and is having all the expected side effects. He may be suffering from graft vs. host disease. Please keep him in your prayers.

Sinjin was the second person we meet with Burkitt's (Brett Workman was the first). Sinjin has beaten several relapses with Burkitt's. He is now having a very difficult time, and the cause is unknown. New scans have been run, but the results are not back. Graft Verses Host Disease, relapse, and many other possibilities have been discussed without any conclusions. Please keep him in your prayers.

Tristan had Burkitt's and relapsed while on his Make-A-Wish trip to Florida. He has received his transplant. He is getting stronger, but is still in a lot of pain. Please keep him in your prayers.

And one more...Joe is someone we have not meet, but have several mutual friends from J-5. Joe had cancer as a teenager and beat it. Although he was out of treatments before Tyler was diagnosed, we heard about him from others on J-5 who had meet him. Joe is now 21 and getting married. He just relapsed, and is back at Children's. Please keep him in your prayers.


Lori said...

I am so glad that Tyler is doing well. Also, I appreciate your blog. Your posts are always thoughtful & well written. Thanks.

Lori (Cameron's mom)

The Smith Family said...

We can't thank you enough for your reminders that this is an ugly disease -- One that touches all of us in ways that none of us should forget. We keep these families (and many more families, thanks to you) in our prayers every day. God Bless you, Tyler, and your entire family.

Teresa Gore said...

I have been following your blog for a few weeks now and am so glad to read that Tyler is doing well. I love what you told the lady in church about drinking. I can hear you saying it to her and laughing when you were finished. I found it funny even if she didn't! Your blogs are great. I never knew you had such a talent for writing. I will keep Tyler and the others in my prayers. Teresa Gore