Wednesday, December 28th
Claire's stay at UCSF was filled with lots of holiday surprises.....golden dogs dressed up as elves bearing candy canes, a compassionate Robin Williams delivered well wishes and presents, and even the real Santa appeared to spread good cheer and hope to all of us. We would shiver with anticipation each time Claire's hosptial door opened. Claire tolerated the chemotherapy and transplanted cells very well and was able to return home on Saturday, December 23rd. Her stay home was brief as she dropped hard with a slight fever Sunday Christmas Eve. Although she could not have been more precious and sweet as she opened a few of her gifts that day. She sat on my lap and exhibited more excitement for Reese and Ryan during present time then herself. She genuinely thanked Chris and myself for a small dora christmas wrapped item prior to even opening it. She was the real Tiny Tim, especially when she unexpectedly crawled over and hugged Ryan warmly - just because she loves him. Her kisses and touch were sincere and heartfelt and it was very difficult for all of us to watch her body fall that evening. Unfortunately, her late night admission to the hospital required some diagnostic tests first so she and I were not able to lay in bed until almost 3:00 am. Ryan and Reese awoke at home to special gifts and filled stockings and enjoyed their day outside with all the other neighbor kids proudly displaying and riding their new prizes and a big smile did come over Claire's face when she saw her stocking filled by Santa at the end of her hosptial bed on Christmas morning and exclaimed "Santa came to me too!!". It wasn't our traditional holiday night or day but we tried to make the best of it for all our family and kids. Claire's body is tired and low and I find her spirits are beat down as well after so many months fighting. After 4:00 am vitals on early Tuesday morning, she sweetly asked if I would lay with her and hold her as she slept, a frequently asked request we all are honored to fullfill. But this time she lay almost lifeless and nonresponsive and then quietly stated, "Mom? I feel sad". I held her as tight as I could for the rest of the night and promised her we will all be happy again. OH PLEASE let us have our Christmas Wish soon, I don't know how much more her delicate body and soul can take. We are all having a harder time with this treatment recovery period due to the unspeakable fatigue and stress, full body depression and grief, and the unconscience thought that terrifies us daily .......this might be her last Christmas with us. How can life and love be so cruel?

Monday, December 18, 2006
This morning was brisk and cold here in Sacramento, yet when Claire went outside she stated softly, "What a beautiful day!". And it is.....Claire's blood counts recovered enough for UCSF to say... "Hooray and Come On Over!". SHE DID IT! The car is packed and we are heading out immediately. Maybe Santa could visit San Francisco first this year. Thank you for all your support and continued prayers - YOU DID IT!

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.