Sunday, September 3rd
It has been another week of highs and lows, two steps forward - one back, etc. We are trying to get better at living with the unknown from day to day and the overwhelming emotion of being powerless in Claire's fight. Claire broke her fever on Monday morning, a large relief and at that time her blood cultures that detect the presence of any infection were all negative. Her white blood count dropped to zero, unbelievably scary but normal in children after chemotherapy. The significance of your white blood cells are to fight off and assist the body in infection control among other important functions. Normally, a child will have a white blood count of 6,000 to 17,000, so anything under 500 and even without the presence of an infection (fever, etc.), Claire will probably be hospitalized and treated with antibiotics as a preventive measure. Her days home are not expected to be many. Healthy children can fight off an infection over a couple of days even before it materializes into visual signs of a cold, flu, etc., when your white blood count is under 500, an infection can develop and become serious within 30 minutes, that is why Claire was initially hospitalized on Saturday. We also learned that the reasons or indications for a fever when your white blood count is so low are endless and that they call this the "waiting period". It's excruciating. Every individual will regenerate new white blood cells and recovery at a different rate. Claire received a red blood cell transfusion on Monday which quickly provided her with an increase in energy and overall spirit. Saturday through Monday were really difficult for Chris and I as her yearning to go back home and restlessness due to being generally uncomfortable and unhappy escalated, always progressing to its peak in the evenings and throughout the late night hours. But Monday night, she was sitting up and all of a sudden and unprovoked, with a twinkle in her eye, she crushed up a piece of tissue (cause again evil therapy mom makes her get and wipe her own runny nose) and she threw the tissue right at me. She laughed so hard. We proceeded to deplete the entire box, covering the bed and floor with tissue wads - it was a delightful combat. A couple of months ago, I don't even recall what initiated or brought on the situation, but Claire refused to try something (I know...what a surprise, Claire stubborn), I told her if she says over and over, "I THINK I CAN, I THINK I CAN!!", that I bet she could succeed. Completely uncharacteristically of her, she tried it and it worked and she independently uses this phrase or verbal motivation occassionally. On Monday also, Claire received a roommate - an adorable, chunky, thick haired, 4 month old boy receiving chemotherapy. I don't even need to describe the heartache. But he started to cry and Claire whispered over to me, "Mommy, we need to teach the baby "I think I can, I think I can". So we quietly repeated the saying over and over together for the baby and sure enough he eventually found some peace, Claire's smile was priceless. It's times and moments like this that keep us breathing and able to wake up sometimes....only our Claire can engage in battle one minute and then so lovingly show such compassion another. Monday was a good day. Unfortunately, Tuesday proved to be very frightening for us. Claire's aggitation rose to an unexpected level causing her to scream and cry uncontrollably. She had an emergency CT scan to rule out any sudden swelling in her brain that would cause her such pain and a small but spike in her temperature again. The CT scan did not indicate any changes in the swelling of her brain from her previous scans. She was immediately treated with a second antibiotic and we sadly learned the unbelievable and skin crawling effects chemotherapy has on your body, especially in brain tumor patients. We have since then been able to provide Claire with some comfort and peace with pain and anti-anxiety medications, when neccessary. Wednesday, was a huge day for us as Claire's white blood cells actually rose from zero to 30, so we knew she was on her way back to us and fighting hard. Friday, her count was 280 and today, Sunday, she is at a whoopping 1600. Her silliness and impromptu behavior has followed her increase in white blood count throughout the week. Yesterday, at 12:35 pm, she sat up in bed, all shiny after a bubble bath, wearing her yellow University of Oregon Daisy Duck t-shirt, with a green and yellow pom pom in each hand, completely surrounded by bags of chocolate teddy grams, coco puffs, chocolate donuts, cheetos, and doritos, just to name a few, for a "Go Ducks Party". She would wave her pom poms to all the nurses and cheer "Go Ducks" as we enjoyed the Oregon football season opener on television. It was a magical moment I will always hold dear. We received some preliminary news late Friday, that her MRI on Thursday compared to her pre-chemotherapy treatment MRI was positively shocking the physicians with sucessful results. We will have to wait until her entire neurosugery and oncology team can review them together on Tuesday for a final outcome. But the initial report and probable success of even her first cycle of chemotherapy helps deal with the haunting and stomach eating thought that we are basically poisioning her close to the brink of death to ultimately save her in the end. This is our life for the next year. Please know your continued outcry of support through received cards, presents and meals with such positive energy and prayers from near and far are enabling us to fight this horrific disease along with Claire, saying "Thank You" will never be sufficient.