Friday, October 20, 2006
When Claire was home it was fantastic but came and went too quickly for us. She ended up home for 12 whole days - unbelievable!! She played, laughed and enjoyed life again, each day was full and memorable. We had a family celebration for Ryan's birthday and Claire ran for touchdowns during our backyard football scrimmage, initiated a game of duck-duck -goose with the neighbor kids that visited and immediately picked up a basketball and lined up to shoot 3 pointers at Ryan's new basketball hoop. She was on fire! Claire hosted a small dinner party with a few of her close friends during her stay home too, there is nothing more soothing and infectious than young girls giggling together. Late Monday, October 9th, we found out that Claire would not start her 3rd round of chemotherapy on Tuesday as planned due to a delay in scheduling some diagnostic tests that are required prior to treatment. As we rejoiced in the ability to spend a few extra days with Claire, it was met with quiet reservation too. The remaining tumor mass haunts us daily and we feel it is an evil being that will thrive on any opportunity to regain strength and live, so although there was no real medical threat to postpone treatment by 3 days, as parents we were scared. Our last two days home before her next hospital admission were difficult for us. Claire was living strong as before and we were happy again until on Wednesday we had an urgent meeting with her oncology team to discuss some new research and non standard protocol for children with brain tumors currently administered by University of San Francisco. If we wanted to explore and discuss this high dose chemotherapy / stem cell transplant option, we needed to spend our last healthy day with Claire in San Francisco, also missing Ryan's bowling birthday party with 12 wild first grade boys. It was like pouring salt on our wide open wound. Our family and friends stepped up without a thought like they have done consistently for us since this nightmare began and put on a party for Ryan filled with cool new high fives, silly bowling strike dances and birthday cake in the face - a 7 year olds dream. Although the news that Chris and I would not be able to attend Ryan's party was met with tears and disappointment, he was king for the day and rallied in the glory like he always does. Our meeting in San Francisco was very tough for me. I had found a place of strength and courage that I could maintain as long as I only dealt with Claire's current health battle. When discussions of long term outcomes, survival statistics and quality of life compromises start I literally melt. It is too terrifying to overcome. I understand and appreciate the field of medicine and the reality that physicians, especially pediatric oncologists, walk a tight line between providing the facts with hope and displaying too much optimism that could ultimately prove fatal, but as an already fragile parent, dreading the return of a vibrant and perfect child to chemotherapy the following day, the UCSF physicians' news and meeting was too much for me. There have been numerous times in my only 7 years of parenthood that I have stopped and thought... "this is the best time", only to have 3 or 6 months go by and Ryan, Claire or Reese begin a new phase of growth and childhood that makes me recant my earlier statement and believe yet again - "this is the best time". I love when they are small babies and fill you with such warmth from their adoring stare as you know you are their whole world. I love when they want to explore and their individual character and personalities starts to shine. I love their first playdate, sports team and school performance. No matter how good it is though at the time, I truly shake with excitement thinking about the next day or experience with them. As the quiet tears dropped steadily from my eyes during the two hour drive home that Thursday, all I could think of was how I would give anything - absolutely anything - to stop time, because "THIS is the best time". Ryan is still full of innocence and possesses the amazing ability to turn the most insignificant event or item into something so GRAND you are left with only envy. Reese is a bundle - a plump 20 pound bundle - of sweet candy you want to grab, taste and hope it is everlasting and she, like a golden retreiver puppy, can draw anyone with a beating heart, into their pure joy and happiness just by their presence. And our Claire, our Claire is alive and still wants to hold hands with her parents, is left speechless by princess Cinderellas' company, and can spend the entire summer day at the beach saying "Mom / Dad watch this!!". I regained my personal hope on Friday and was able to take Claire back to the hospital only because I am surrounded by family, friends and Chris that BELIEVE with such power and conviction it is emotionally contagious. She underwent the last week of another hard and heavy dose of several different chemotherapy agents and kept a smile on her face through most of it. We have adopted a dear and loving 10 year old girl with leukemia that was Claire's roommate during her last two hospital stays. Her childhood and family have not been kind and her grandmother is raising her and some of her siblings to her best ability. Unfortunately, she is left alone and scared a lot. She calls Claire her sister and we try to comfort her as much as possible. She was in a considerable amount of pain one night and I went to her bed to hold her hand and assist the nurses with administration of some medicine. I pulled the curtain that separates the two girls as I didn't want Claire to be frightened, but through the curtain, we all could hear Claire gently repeating to our roommate...."I think you can, I know you can!". Claire can be obstinate at times but her heart is gold. We are extremely proud to be her parents. She came home this afternoon nauseous, tired and beat down. So I am going to sleep next to her and whisper in her ear all night long..."I think you can, I know you can".