Friday, January 2, 2009

A Healthy 2009

We are looking forward to a 2009 with no stays in the hospital.

Tyler spent over 200 days in the hospital during his illness. It is very odd walking into a hospital and feeling like you are back home. This time last year, Tyler had been unable to eat for a week. We were very excited New Years Eve because he was able to get through a couple spoonfuls of pudding. Today we can not keep enough food in the house. I'll take that problem any day of the week.

We are very thankful to God for Tyler's amazing recovery. We were always confident in his victory, but it is a joy to watch him walk around strong and healthy.

It was this time last year when we were learning the critical importance of parents remaining completely involved in every detail of their child's treatments. Due to both the volume of case loads and the fears of litigation, there is extreme pressure on doctors to hold fast to pre-set protocols. These protocols, approved by insurance companies and lawyers, are designed to treat the "statistically average" patient. The burden falls on the parents to watch and manage any variation their child may have from that hypothetical average.

Some great strides have been made in the treatment of many childhood cancers. The greatest weaknesses continue to be with the variations, the kids who do not respond according to the hypothetical statistic model. That is why there are still so many problems with the rare cancers that do not have their own protocols, as well as with teenagers, where natural physical changes are causing variations their response to treatment. Clearly, a more individualized approach is needed. But today the overwhelming emphasis is on streamlining and cost cutting. Until that changes, the burden falls squarely on the parents.


On Monday before Christmas, Tyler took "build a bear" type stuffed animals and gifts up to J-5, all labels "Team Tyler - Fight to Win!" The gift bags were put together by a great friend and neighbor. Going back to the J-5 cancer floor was not easy for Tyler. It brought back a lot of memories. There are a lot of kids up there still fighting for their lives. But it really helps the other kids to see Tyler...Been Then, Done That...there's normal life after cancer. With the help of many friends and neighbors, Team Tyler was able to buy enough stuffed animals and other gifts for everyone on J-5 and the day hospital. And there was plenty left over to take to the cancer clinic to pass out there. We will never stop supporting these kids, never stop supporting the fight for the cure.

The highlight of our day was getting to visit Ryan. He was looking great. He was telling us about his meeting with Wayne Gretzky, and his interview with the dispatch. Beating cancer is frustrating. It is a series of small gains, constantly interrupted by set backs. And each set back brings compromise in the treatment options. I can not begin to imagine the strength involved in maintaining to necessary positive attitude through all of this. As a father-spectator, this was my greatest struggle.

Please keep Ryan in your thoughts and prayers. Also remember Mason, as he prepares for his bone marrow transplant for his relapsed Burkitt's.

Tyler with some of his build a bear gifts for J-5.


Anonymous said...

I love to read your posts they give you hope and give you knowledge.

Aresparsons Mom

Rebecca Parsons

Anonymous said...

That was so great - the presents brought to the floor! I'm sure all the parents and kids just LOVED it!! We had planned to go with Nick over the holidays, but he has bronchitis (again), so we steered clear remembering just how much we cringed when others with runny noses, nasty coughs and whatever else came walking down the hall! Hope you all had a wonderful holiday season!! Take care!
Heather Timbrook (and family)