Saturday, September 23rd
We elected to take Claire back to the hospital late Thursday night as she was dehydrated and it was visually apparent that she was getting close to a low white blood count. We learned during her low period with the first round that although there is no equal to being home, when she is that ill, having her at the hospital is truly the safest place for her. She woke up Friday morning, after receiving vital fluids and nutrients throughout the night, with a smile again and asked "Is my birthday over?". I quickly responded, "Absolutely, Not, It's Your Birthday Week!". We brought her DORA birthday decorations, balloons and cupcakes to the hospital and shared with all the children on the floor. Plus the outpouring of everyone's kind and thoughtful gifts we received for Claire and for the hospital will take her til next February to open. Thank You ALL Very Much. Some of your donated toys were already in the playroom and both Claire and Reese enjoyed performing an induction ceremony for them on Friday. She is holding tight but hit rock bottom today. We do not look forward to the week ahead but know she will prevail. Her next scheduled MRI will occur during the first week of October. Depending on those results her team of physicians will consult and determine if she will receive a third and final round of the very aggressive chemotherapy regiment she is receiving right now or proceed directly with her second surgery to remove the remaining tumor mass. The cancer cells turned into a real life evil alien that not only invaded and took over Claire's beautiful brain but developed into a self perpetuating being. They are hitting her with everything they have to stop it from spreading and ultimately cut off its blood supply and ability to live independently, making it safer to compeletly extract. Her long term treatment plans are tentative but post her second surgery she will under go radiation and more chemotherapy to provide Claire the best chance for the future without any reoccurance. Radiation therapy at such a young age is not prefered as there are long term side effects but research shows without it there is almost a 95% chance of the cancer resurfacing. I found myself staring at Claire sleep Thursday night in the hospital smiling at her and was warm and comforted inside as I welcomed my deep love for her to completely fill me and bring me strength again. The pure and life confirming unconditional love of a child is such a wonderful blessing to experience even under these circumstances, how can Chris and I feel anything but gratitute for Ryan, Claire and Reese.

Happy Birthday to Claire, Happy Birthday to Claire!!!

Thursday, September 21st. I promised myself all week that I would rejoice and be blessed that on her 4th birthday Claire is alive and having her with us is the best gift of all. Icing on her birthday cake is that Claire sailed through her week of receiving all her chemotherapy drugs, absolutely no nausea, and WALKED slowly but independently through her home front door late Tuesday. She is home on her birthday, where she is surrounded by love, life and happiness. But the evil and degrading effects of the drugs started to appear this morning and stole all her energy and bright color. Currently, she is fever and symptom free of any infection, it's just so difficult to see her need to rest after walking from the DORA decorated kitchen table to the living room or watch her excited and requesting all her favorite foods only to sit and stare at them as the drugs devoured her appetitie. I found myself taken with grief and anger again....wanting just one day of our / Claire's old life back - wanting not to feel empty inside cause I selfishly miss my vibrant and beautiful angel. And as I screamed and cried this morning in the shower, I pictured Claire with her hands up, yelling "WEEEE!" as Auntie Erin and I, wheeled her and Reese down the hospital hallways last Monday, and pictured Claire smiling and feeling the fresh air on her face, for the first time in almost two months, yesterday on the swing in the backyard, and I felt warmth remembering Claire kissing and holding my hand while we walked to bed last night and I started to repeat my earlier promise to myself over and over and over again. This isn't the birthday or year we dreamed of for her but she is here today and fighting harder than we can ever imagine. The cancer and treatment can take her body right now so that she can thrive again later but underneath the horrible fatigue she is still our Claire in spirit .....Our Claire that idolizes her older brother always seeking his attention and approval, that adores her father and wants only to be in his arms, that is truly content and happy when Reese is near by, that laughs and giggles with her aunties, uncles and cousins, that loves to be spoiled by grandparents near and far, that at such a young age has encountered genuine and special friendships, that will never know the strength and courage she inspires in her mother and most importantly that she fills all of us with a sense of intense joy and pure love every day. Happy Birthday Super Claire!

Friday, September 15th
Sunday, August 13th was Claire's official first day awake from her 14 day off and on coma. Her speech and vision was weak, she had no head control, or voluntary movement capabilities in her limbs. The neurology team repeatedly informed us of possible permanent neurological damage and physical disabilities and that the road to recovery does not occur in positive incremental progressions. For example, she might speak one day and not talk for 3 weeks again before her speech returns or she might improve to the level of holding a cup one day and then lose that strength and neurological ability the next. At this point, only 30 days later, we are not completely surprised, as Claire never responded well to the received statement of "No, You Can't!", but we are incredibly joyful and pleased to report.....the neurology team has stopped warning us as they are utterly speechless. Claire has advanced so quickly and improved almost daily at such a significant rate, her entourage of medical professionals now, just watch, smile and cheer her on without any hesitations. Her poor physical therapist provides us treatment plans and exercises to concentrate on for the next stage of Claire's recovery, anticipating success in these specific areas over the next few weeks to a month.....Claire surpasses her most advanced achievements within days. Each morning her scheduled lesson plans have to be quickly rewritten as they are already outdated and it is 100% all Claire. Here is a small sample of our recovery life with "Super Claire":

1. Sun. 09.10.06, Claire stands unaided and unsupported for the first time for a couple of seconds - "No Hands".
2. Mon. 09.11.06, Claire takes first 2 steps forward by herself into Auntie Danielle's arms.
3. Tues. 09.12.06, Claire walks during her morning PT session approximately 10 steps to sit at a table and visit with her sweet preschool classmate. The same afternoon, trying to chase Reese, walks another 15 - 20 steps, with light support around her waist.
4. Wed. 09.13.06, Claire wants a new movie to watch and states "Get My Shoes", she crawls off her bed and walks down the hall about 30 - 40 feet to the video cart.....AND back.
5. Thurs. 09.14.06, Claire finds out there might be chocolate donuts downstairs in the hospital cafeteria.....I immediately hear again, "Get My Shoes", and she is OFF. We visited the cafeteria three different times and once again to the video cart - HUGE DAY!

She pushes her own IV pole with some assistance as the pole is kind of heavy, but she is walking independently, with strength and conviction. She is an absolute medical mystery. We received good news that her fever from last Friday was just a fever, no infection, therefore we were able to start Claire's second round of chemotherapy Monday night and anticipate completion around next Tuesday - Yes, the same Monday 09.12.06 that Claire decided to display her Olympic athletic will and determination to walk.....while on hard chemotherapy drugs. So far so good regarding her energy level and lack of nausea, we learned from last time, it is the 7 - 10 days post chemotherapy that is so incredibly dangerous and frightening. But again if anyone can fight and survive...it's Claire.

As most of you know, Claire's Big 4 Year Old Birthday is next Thursday, September 21st. Unfortunately, it will probably be the day that her white blood cell count drops drastically and hard so we aren't planning on a large celebration at this time for her. For those of you that continue to ask for a birthday idea or list for Claire, we graciously thank you but came up with another thought. Hopefully, if Claire's treatment plan is ultimately successful and provides her the opportunity to live and thrive for many unknown years to come, Claire and our family will spend a considerable amount of time over the next 12 - 15 months on the 6 East pediatric floor at Sutter Memorial Hospital. The playrooms on the chemotherapy ward and Child Life Program are our saving grace for family time and Claire's mental, emotional and physical health, so we ask that you assists us in purchasing or donating toys on behalf of Claire Denise Miller. We are duplicating, yet wrapping for Claire to open and leave at the hospital, all her favorite toys that she has at home. Again, we have two homes now and are trying to make both places full of love, security and joy during this difficult time. We can not express our gratitute adequately for all the special inspirational gifts and presents received for Claire and her siblings to date, but we think we need them for us and all the other children during family time at the hospital playroom. So, please consider a monetary or toy donation to Sutter Memorial Hospital, Attention Child Life Program, 5151 F Street, Sacramento, California 95819, (916) 454-3333, on behalf of Claire, Ryan or Reese Miller. Please make sure to include your name and address with any donation and the only toy restrictions are they are not able to receive anything with material or toys unable to be cleaned and washed, as well as, a toy with very small pieces are often unsafe for the younger children and usually lost. I must share that Ryan decided to donate his very special Rescue Hero Tower and accessories to the playroom and proudly announces to every boy and girl that is playing with it that it came from him. It was a beautiful moment to see him feel so good about giving so unselfishly to others, I highly recommend it for all children. Thank you again for your continued prayers, support and love, it keeps us running after Claire - HA!.

Sunday, September 10th
Well, we learned that there is no such thing as "worry-free" when you are facing chemotherapy and cancer, but we can report Claire had the best 2 days home we could have dreamed of. She was all over the house. Almost by the hour she independently raised the bar and kept beating her personal best in neurological advancements. She crawled, climbed and her fine motor control with her left hand improved greatly. It was absolutely amazing therapy, but most fulfilling was just watching her smile and laugh with her friends that so kindly visited. It was what we all needed to experience again. And it was heartwarming to hear Claire repeatedly state, "I get to see Reese-ee ALL DAY LONG!". Although, Claire didn't get the full week-end as planned, as she spiked a fever late Friday night and had to be re-admitted, I can say she was truly happy and had a very special time when she was home and that is what we are choosing to focus on. We will have to wait another day before her blood culture is final to determine if her fever indicates a sign of infection or if it was just a fever, which could affect her Monday night scheduled second round of chemotherapy. Her fever did break late Saturday night (the U of O Ducks football party and win I think assisted, as we ordered pizza and waved our green and yellow pom poms again) and she was back up and going Sunday morning. She successfully achieves huge recovery benchmarks within record time,....she has definitely earned the name "Super Claire". There is a lounge chair next to her hospital bed and she decided to climb back and forth from the chair to the bed Sunday morning. I went to the restroom and came out to see Claire climb down from the chair and stand on the floor completely unaided with her hands in the air, yelling "Look Mom, NO HANDS!". She was smiling from ear to ear. As visitors arrived throughout Sunday, Claire would show them her "No Hands" move again and again. Unbelievable! Everyday is a surprise with Claire, some better than others, but Sunday was another great day for her and again that's what we hold close to our hearts.

There's NO Place Like Home!!

There's NO Place Like Home!!

Thursday, September 7th
Claire came home for our first "worry-free" week-end today and will return on Monday for her second round of chemotherapy. She is so happy and her smile brightened up the house immediately. She has absolutely NO restrictions, so we will be anywhere and everywhere this week-end that Claire chooses, she has been talking about a squirt gun fight with Ryan and Papa for days...they better watch out! Please feel free to call or drop by, her energy level isn't where it used to be but her overall spirit is strong. She refuses to wear a hat or scarf right now, the inching is pretty tough, so you might want to explain to young children, she is still Claire-bear, but as she announced one night unexpectedly, "My Head is Naked....Just like Reese-ee". It's a GREAT day!!!!

Wednesday, September 6th
It is with mixed emotions that I update her website today, as I am on a complete high from spending and watching Claire blossom the last two days but also sad as her first day of 4 year old preschool, Mrs. Main's class, started this morning, without Claire. I was lucky enough to have another angel come into my life, her name is Virginia, she is the mother of the 4 month old little boy, our special roommate for the last week. Her courage and attitude was inspirational, but it was her daily advice that lifted my spirit and outlook on our situation. She and her husband and four year old son decided if the baby was in the hospital, they would bring "home" to him. They had playdates, sleepovers, pizza night all as a family - just at the hospital. Claire's health steadily improved last week and yet on Sunday she seemed depressed and down. I realized that she had been in the hospital for over seven days and not seen Ryan or Reese once. We decided we needed family time regularly and to take Virginia's wise counsel. Claire did not go willingly as she unfortunately became very self conscience and wanted to stay only in her bed, but we picked her up and took her to the hospital playroom for pediatric children and families. Grammie, Auntie Danielle, Ryan and Reese were all there to shout "surprise". Her face lit up and came to life again. She sat on a bench and we placed Reese on a blanket below and Ryan found some car tracks and started playing too. Claire immediately wanted down on the floor to participate and joined in. Her strength and neurological capabilities exploded...crawling to get toys for Reese, throwing a ball back and forth to Ryan, stacking blocks and laughing as she or Reese knocked them down, completing puzzles with little assistance......IT WAS INCREDIBLE!!! Her sweet smile and genuine happiness was a gift from above and it provided us with the motivation to face the next round of challenges. Virginia told me that some of the children on the unit are just dropped off by their parents during their chemotherapy treatments as they are unable to deal with or accept the difficult situation. I recall responding, I didn't think as parents we had a choice. Virginia sensibly stated, "you have the choice to drown in your sorrow or make everyday as happy and great as possible for Claire". I realized I was drowning, going through everyday completely numb and concentrating only on my own breathing and sadness, not providing Claire all of me and that she deserved better. We had family time on Monday and Tuesday as well, Reese actually visited twice on Tuesday and with each visit Claire progressed at an unbelievable rate both physically and emotionally. She can climb up from the floor onto the bench pretty much unaided and even took three steps to Grammie while I held her pelvic area for security. She had talked all morning about wanting to walk to Grammie and she did it - that's our Claire. It has been a GREAT couple of days. We are unsure at this time when her next round of chemotherapy will begin, as early as this Friday or there is talk that we could actually have a "worry-free week-end" with Claire at home and start up again on Monday. You can imagine how tight my fingers are crossed for Claire to come home right now and live a normal day or two. It's 10:00 am and I'm sure Mrs. Main has already sung the good morning song and completed calendar and student assignments by now (line leader is still the #1 choice), Claire is there in spirit and will be BACK soon!!!!! I'm sure she will again be the only child not to shed a tear when their parents leave but to acutally look up and shout "Mommie, go home now" and kick me out each morning.

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.

September 1st, 2006

"Those who can most truly be accounted brave are those who best know the meaning of what is sweet in life and what is terrible, and then go out undeterred to meet what is to come."

Claire is showing signs of improvement. She still remains at Sutter receiving great care. She will not be returning home for the holiday weekend and most likely will remain hospitalized for several weeks. Claire's spirit and bravery are becoming clear. She is fighting and a initial MRI report late this afternoon was very positive.

Keep her in your thought's and prayer's.