transfusions

Give a teenager steroids and they will even clean out a hospital kitchen. Riley has been eating since we arrived at the hospital. He has fallen in love with chef Boyardee beef ravioli. two servings and popcorn and hot cocoa with milk and he is still eating. His weight was 52.6 and climbing this morning. two weeks ago he was 51 kilos and falling. Last night after dinner he asked for steak. Of course I had burned the grilled cheese again so he probably was legitimately hungry.



I asked the doctor about Riley's blood type. Today he is receiving A negative. That is important when getting red cells as they have negative and positive receptors. It is not so important with platelets. I asked about his white cells since his numbers looked so good. He said it means nothing until he hits 5 . Whites, because they replace themselves twice a day have no standard at Riley's level. But the news can't deflate my optimism. Riley looks and acts healthy.



Tom said the same thing the other night. He will not argue for the bone marrow as long as Riley seems to be doing well under this treatment. Quality of life is important. If Riley were sleeping a lot and listless, Tom might push a little harder for the bone marrow. Insurance does play a significant role in that decision. Insurance knows that bone marrow could turn nasty and end up being an open check book, so they discourage it until they know this treatment has been tried and failed. It is irritating that they have a say in our treatment decisions, but theirs is a business decision. You just have to know how to work the system.



On another irritating note, Tom could not adjust our flexible spending this year. It is set in November. Tom could divorce me or have a baby and make an adjustment, but getting sick in February with a life threatening illness doesn't qualify as a life change. This is why Tom and I advocate Medical IRAs and not flexible spending accounts. Well, we work with the system we have. It could be better, though. Tom makes too much money to be allowed to do it independent of the company's health plan. Some restrictions prevent us. I can't even take a deduction for an IRA contribution.



I think about my dad a lot recently. He was diagnosed at stage 4 colon cancer. It metastasized to his liver before they even found it. We all thought less than six months max. He bought himself two and a half years, by shear will and determination. He would nibble through the nausea. He would force himself to get up and get on his bike or walk each day at 7:30 in the morning. He maintained the quality of life he wanted.



When Dad moved to the desert, he bought a small one story two bedroom for cash. He told the real estate agent he wanted secondary market. They must have looked at 100 houses. This was in 1995. He finally picked a home he knew he could stay in until the end if his health every changed. He achieved that goal. He was biking and running errands the week before his death. Less than three days of being bedridden before the end. My sisters and I were all able to see him when he was still able to function normally and we were able to be with him at the end. No regrets.



If not for his own strength of character, we would not have had that special extra time, that two years. I know my sisters and I will treasure that time as much as any other we had with him growing up. I will remember being crammed into the carmengia and later the rabbit with all six of us including my little brother. One of us would sit on the gear shift on a pillow. Children's Skis would run down the inside of the car blocking the doors. Dad would crank up the Eagles on tape. Somewhere before leaving the Portland area on I84, he would over heat and remove his sweater while driving with his knees going at least 65. He was young and happy and with his family on a mission to have fun. He was a morning person. Up early and raring to go. We would all drag ourselves out of bed wondering where dad got his energy and enthusiasm at 6:00 am.

Summers where the same. He would pick us up and head out to the boat. It used to be on the Willamette. We went through a lot of props hitting submerged logs or rocks beaching. I remember the eel slithering up over my sister's ski. I remember Dad hitting a bird and mucking up the prop. Gross, but good memories. When we got the boat into Lake Oswego, the lake was a lot more gentle on the boat. It was easier all around. We would start up the engine at 7:30 am, I liked the first ski because the lake was like glass. Not a ripple disturbed its surface on that first run. later the waves would start bouncing off the sides of the lake roughing up the surface. Late in the summer the wake would turn green with algae and we would all come out smelling a little of sewage. Dad approached sports the same way he approached everything in life, determined to do it on his terms.


I see a lot of my dad in Riley, his determination to have things his way, his pride in his intelligence and interest in knowledge. I have hopes that Riley has the determination to be strong again and take on the world.

I guess spending all this time in the hospital, is bringing up those memories of doing this with my dad not that long ago, or Tom's Father for that matter. Tom wants me to find out who put the hex on him and get it removed. Meanwhile, I just pray that Riley has that same grit my Dad showed all through his life. The shear determination to do things his way long as possible and still keep his life style intact.

Eventually, I would love to see Riley able to bike and ski again.