Wednesday, December 13, 2006
I am so sorry for the lack of updates over the last month. It hasn't been easy emotionally, and physically we were all struck by a bad head cold. Claire's UCSF hospital admission was impressive. Claire was a hit within minutes of her visit. She was wagon racing down the hallway with one nurse and greeting all other staff on the pediatric bone marrow transplant floor like she was a celebrity upon her arrival. She was in rare form that day. The sterile protocols are extensive, strictly enforced, yet accepted without question by us and all visitors as the seriousness of her disease and high dose chemotherapy treatment is realized. It takes a moving van for us to transport all her personal hospital room decorations and items. Claire and I "decorate" for at least an hour with every admission. Her private room is covered with chic bullentin boards full of family photographs; princess storage boxes separated by activities - arts and crafts, dora figurines, playdoh, etc; beautifully framed photos of claire everywhere; special keepsakes including a Fruit Loop cereal necklace by silly Aunt Loretta and pink funny toys received by many located throughout; priceless quilts made with love especially for claire displayed with honor and care; her golden retreiver stuffed dog guards the end of her bed at all times; her precious 2005 preschool "Claire Denise Miller Star of the Week" picture poster exhibits directly above her inflatable dora the explorer headboard; and even her closed hospital door window is ceremonial, including pictures of Claire and her own personalized business card - " Hi, my name is Claire.... Some of my favorite things are ....chocolate, barney, target, hazel, dora, ice cream, ryan, baby reese, tea parties, disneyland, pink, swinging, cinderella, and my mommy and daddy", fantastically designed and created by my Aunt Deidre. Each visitor into Claire's room requires a minimum 2 minute medical hand and arm scrub but that did not stop unknown nurses and other allied healthcare professionals from entering, all stating "I keep hearing about this precious girl on the 7th floor and I had to met her for myself". Her UCSF physician wants to hire Claire to decorate her home and each day would ask about certain pictures or memorabilia. I told her on the first day - making Claire's hospital room special and warm embodies several positive aspects for us but it is also extremely important that the physicians and hospital staff caring for our angel....KNOW her not just her disease or diagnosis. I am pretty sure they know her now. Claire came home on the tuesday before thanksgiving, weak and tired. It doesn't take long for the chemotherapy to start breaking her down especially her poor stomach. The lining in her tummy after four aggressive treatments is absolutely destroyed and angry. With each outburst you can honestly feel her volatile stomach revolt and scream in pain. Ryan and Reese flew up to Oregon for the holiday week so they could enjoy their cousins and family seen so rarely these days, so it was only Chris, Claire and myself at home. The quiet and controlled house was a real blessing for Claire as that was the beginning of the long fight with a viral bug that infected 2 papas, 1 grammie, 1 auntie, daddy, mommy, brother and sweet baby reese. The normal winter head cold in most families is frown upon yet tolerated - in our house with an extremely immune system compromised cancer patient, it was met with the combined anxiety and fear of the plague, bird flu, and west nile virus topped with a little e-coli. The black hole of chemotherapy peaked on Monday, November 27th for Claire. She lay lifeless in her hospital bed in Sacramento barely able to raise her hand in an effort to communicate. It's a difficult time for her and us. Remarkably, her transplanted stem cells started appearing and within one day sleeping beauty literally awoke again. She was discharged on Saturday, December 2nd. Claire's white blood count was at zero for less than a week - her stem cell rescue worked magic. As we rejoiced in the idea that she could be home for almost two weeks prior to her next UCSF chemotherapy treatment, we were haunted by the possibility of the admission being cancelled upon the unsuccessful results of her scheduled MRI that occurred today. The last two weeks were exhausting and frustrating. We celebrated only one day without an outpatient doctor or hospital clinic visit. We spent anywhere from 4 to 10 hours every day dealing with blood draws, nasal tube insertions, transfusions or diagnositc tests. So our time home has really been quite limited, which isn't to say she hasn't squealed with excitement in greeting Reese each morning or participated in lively duck-duck-goose games around the kitchen table with joy. She is as happy as can be and absolutely beautiful and just as tempermental as before. I want the hot sun to come back as I can not handle another MOM vs. CLAIRE stand off over wearing a sweater or jacket outside. The holidays and celebratory month has many challenges this year for us. There is a part of me that is so angry that Christmas is still occuring and people are excited about the season upon us. It isn't a time of joy or cheer. I'm sad and scared and tired. I miss sleeping without fear. I miss sharing kid stories with the other moms at school drop off or pick up time. I miss being Reese's full time mom and love of her life. I miss knowing everything about Ryan's school day and friends through parent volunteering. I miss stupid things like coordinating Claire's hair ribbons or bows with her young school clothes. I miss traditions, innocence and happiness. Claire's MRI results today were mixed and almost inconclusive. The 90 minute meeting with her two neurological and oncology physicians here in Sacramento reviewing Claire's films from today to her previous films of late October was very difficult. The tumor remains unchanged. There are significant risks to her to proceed with another chemotherapy treatment at UCSF if failure is ultimately experienced, yet the alternatives are just as horrific. Since the tumor has not spread at this time, the final decision by her medical physicians in Sacramento and UCSF and us are to try a second round of the high dose chemotherapy next week. As if life is not cruel enough, Claire's blood counts dropped questionable low this week and she is not eligible to start more chemotherapy unitl she recovers and can be transfusion independent. Her admission to UCSF scheduled for Monday, December 18th is dependent upon the results of her blood test that same Monday morning. A Christmas Miracle is on our list this year for our Claire.