Madelyn Jill: Thur Dec 16

Madelyn has had a pretty good week. Her spirits overall have been high.

She is seeing more of the ramifications of her treatment especially the steroids. You will see in the pictures of her that she has extremely swelled cheeks and large belly. This is a common "look" of children on steroids. This will start to go away in about two weeks when she tapers off this drug. And will begin again in month 5. Her hair is starting to fall out now too.

We are using the words Leukemia and cancer with her when describing why she is sick. We explain that she has a sickness called Leukemia or cancer. It is happening because her red blood cells and white blood cells are fighting. The doctors are giving her "big" drugs to stop this fighting and to make her cells well again. It is important that she trusts us and knows that we are not hiding things from her. We want these words to not be a source of dread (as they are for us adults) but of definition. We are talking with her openly of loosing her hair, that it is temporary and all the fun things we can do during this short period of time. Cool wigs, crazy hats, head tatoos, etc.

She will start the stage in therapy called Consolidation next week. On the 23rd she has another big day of bone marrow biopsy, Lumbar Puncture for chemo, shots in each leg with chemo, and chemo via IV. She will not be feeling good on Peter's Birthday, December 24th. After Christmas we will have more of an idea of her new cocktail of drugs and what we will be dealing with for this four week period. The purpose of the Consolidation period of therapy is to prevent the appearance of the leukemia in the central nervous system and to further decrease the number of leukemia cells.

She has had a fun week of visitors. Ashely on Saturday. It is always wonderful for all of us when Ashley comes. Madelyn and Sophia love Ashley and Peter and I can feel completely at ease taking a little time to go to lunch. They could care less when we walk out the door and that feels good. It also is nice for us leaving Madelyn with someone that knows her so well. She knows when Madelyn is not being Madelyn. Sunday, Keira and her Mamma Katherine came to visit us. Madelyn was not feeling well this day, but still had a good day. Having Keira there made her happy. Monday, Madelyn had Daddy all to her self as Phia and I went to Anacortes for the day. She always loves Daddy days.

This was my first day home since November 23rd and it was hard. Hard to be home without my family. It was a reminder how much our life and priorities have changed in such a short period of time. I wasn't able to see and do all I wanted, but it was good overall to be home. I cried most of the day. We miss home so much. I had planned to go home that evening... but I was just too emotionally exhausted to drive home that night. I spent the night at my parents. I didn't feel like being home by myself. (By the way... Sophia made me listen to Keisha "Tick-Tock" the WHOLE ride back to Seattle the next morning. And I am not exaggerating. She wanted happy dancing music. Nice wholesome stuff right?)

Tuesday, Grandma Terry and Grandpa Jim came to visit. Wednesday, Grandma Harriet and Grandpa Urs came down in the afternoon and spent the night. Peter and I were able to go out for dinner together that night and have a nice exercise walk. Was VERY good for us. It felt like the first time we were able to really talk about the previous three weeks. The girls made gingerbread houses with Urs and Harriet. Sophia ate most her hers. Madelyn helped them cook dinner and has been actively helping with cooking all week. She is really enjoying cooking and has pretty sophisticated tastes for a 4 year old! Check out her grocery list. She is the only child I know that ASKS to eat Brussel Sprouts.