February 19, 2007

Claire continues her recovery at Sutter Memorial. She has done very well with a few bumps due to the high dose antibiotic treatment to control the infection. As of today, she is on track to return home on Wednesday. We will update her status in the coming days.

Thanks for the support. And though I know I dont need to ask, keep her in your prayers and thoughts.

Tuesday, February 13, 2007

I am so sorry for my absence.....January was full of many beautiful moments and experiences and I want to share all of them with you, but I just received a call and Claire is in pain at the hospital and I need to run back. This last Saturday, February 10th, Claire started with a low grade fever during the day at home but required admission to Sutter Memorial late Saturday night. Within three hours after her admission, her frail and weak body was fighting to survive a very serious bacterial infection. Her fever was so high it was unmeasurable and her abililty to be responsive and breathe independently was jeoparized so close to a full body coma state its hard to relive again. The bad news is her infection is e-coli, one of the deadiest and fastest growing bacteria to a zero white count body there is, the good news if you are able to catch it in time, it is very responsive to anti-bacterial medications. Claire beat the infection by about 2 hours the physicians estimate, meaning if we had not aggressively treated her infection within 2 more hours we would have lost her. I recall crying and yelling at her when she was drifting away from me during the horrific hour late Saturday night - I could not believe she has beat all the odds and medical prognosis' with this evil tumor so far and now could leave us because of a microscopic bacteria every healthy child and person controlls naturally - " I REFUSE", I repeated over and over to her. We all have e-coli and other bad bacteria in our bodies naturally but we can fight it and never know it presence. After 6 rounds of high dose - almost lethal chemotherapy her intestinal lining and normal body functions are so compromised a little bit of e-coli escaping into her blood or other organs is fatal in less than 4 hours. But she did it again and only in Claire style too. There were about 4 nurses and other allied health professionals treating her during this crisis and after a long struggle, Claire suddenly opened her eyes and was able to track us and yelled with such strength and conviction..."LEAVE ME ALONE!". One of the nurses responded asking her which one and Claire looked at them all and thought for a moment..."ALL OF YOU!". The staff and I broke out into more tears but this time with screams of laughter as we all knew - Claire Won!!!! She did it again. She is fever free since Monday, although with the life saving medications comes painful bowel activity, stress and discomfort and the only relief is being held my your mom or dad when you feel so lousy. I promise I will back track and share all the fun stories and Claire moments that accompany the fabulous pictures above taken during an incredible January. Thank you for your unwavering support and love - we feel you!!

February 7th

Just a quick note to say Claire is home from her final round of high dose treatment at UCSF. She was given the red carpet treatment after her check out, with the UCSF staff lining the hallway to congratulate her and wish her well. She seems to have tolerated the final dose very well and in her first day home has shown a true "SuperClaire" spirit. Shannon will be updating very soon but I had to let everyone now she is home and KNOWING SHE CAN!

Thanks and love to all of our angels.

The Miller Family.

February 1, 2007

Our apologies again for the lack of news but again our lives have been in a bit of turmoil. We had medical appointments on the morning of Friday, January 26th, and a decision was made that Claire would complete her High Dose Chemo/Stem Cell Rescue protocol at UCSF. She was scheduled to be admitted on Saturday morning. That afternoon Claire began not feeling well and eventually an uncontrollable fever sent her to Sutter Memorial Hospital. Just our Luck! Claire had been doing amazingly well and her extended stay at home with us was pure joy. Her blood cultures would show bacterial growth (infection) and we faced a 14 day hospital stay. She again was resilient and with the help of potent anti-biotic treatment departed this morning for UCSF to undergo the 3rd and final round of high dose/stem cell rescue treatment. We will take each day one at a time and upon her recovery from this round she will likely undergo another brain surgery to biopsy the questionable enhancing mass. There are questions to what we are seeing on the MRI's and our medical team has agreed that upon reviewing the next set of images (post 3rd treatment), assuming there is no change or growth, we will go forward with a surgery to biopsy some of the questionable tissue. I know Shannon is aching to get on and write and I hope she will be able to update everyone upon Claire's return from UCSF. Keep the prayer and positive thoughts coming. I know the love and support is helping. We have come so far and I believe we are going to beat this disease.

Thanks so much for following Claire and supporting our family. No words can tell you how much it means to us.