Claire Denise Miller

2009-12-11T11:21:00.000-08:00

So sorry on the lack of updated information. Claire has been doing well, enjoying first grade and living life. She recently broke her leg falling from Ryan's bunk-bed but other than that has really been well. Her 2nd cast should be removed after Christmas. The next MRI will take place in January and we will update soon after.

Thanks for checking in. Wishing you all a wonderful Holiday Season!!

2009-09-01T11:31:00.000-07:00

Claire had an MRI on August 27th. The pictures are stable with no sign of growth. This is obviously great news!!

Claire also started first grade on August 21st.

Note: Claire was selected for the "Hero Program". If you would like to check her out go to
www.heroprogram.org

She is "HERO" #3

Quick Update

2009-08-03T19:12:00.000-07:00

So sorry for the lack of information on Claire. It has been nice to live a normal life and this site sometimes reminds me of the struggle. Anyway, Claire has been doing well and we will post detailed info on her progress and summer very soon (with photos). She will be having an MRI this month.

Thanks for keeping Claire in your thoughts and prayers.

Good News

2009-04-27T14:38:00.000-07:00

Claire's MRI results were good. There has been no change and the enhancement is stable. We are very blessed and thankful for each day. We would love to see this "thing" disappear but no change is good news. We are now 1 year removed from radiation therapy which is another milestone for Claire.

Thanks to all of you who take time to follow and support Claire. It has been such a part of her recovery.

Thanks!

SUPER CLAIRE!

2009-04-22T22:41:00.000-07:00

As we again find ourselves anxious awaiting another MRI, I just had to post this picture. It represents hope, life, and CLAIRE DENISE MILLER!!

MRI

2009-04-22T12:44:00.000-07:00

Claire is now scheduled for her next MRI. It will be tomorrow at 10:15 am. It was very short notice, but an opening became available and we decided to take it. Please keep Claire in your prayers and thoughts on Thursday.

Thanks.

Quick Update

2009-03-04T20:21:00.000-08:00

Hello All,

I apologize for the time between updates. As I stated on February 4th, the initial report was stable disease. Claire and I met with our lead oncologist on February 10th to discuss the scans. I was very surprised with the outcome of this appointment. Dr. Wu presented me with 2 screens of images (which is not abnormal for our MRI meetings). She asked me what I saw. In one image the area of concern was visibly larger and brighter. The other image showed a smaller "tumor" with a bit less brightness to the enhancement. The particular images were both of the same area but obviously from different dates. I assumed I was viewing the most recent scan as larger and she was presenting the original pre-radiation scan for reference. I have become fairly educated in reading Claire's scans and comparing them to the last. I had not been going back beyond a scan or maybe 2 when I did comparisons to the area of concern. I was beyond joyous when Dr. Wu explained to me that the image showing a smaller enhancement was Claire's most recent February image. She was contrasting it with an image from June 2008. What this represented was that the radiation treatment appears to have had a positive result and most likely damaged the tumor. Only time will answer our questions but Dr. Wu (and some members of Tumor Board) presented this as a very good sign. Hopefully the damage and destruction to those cells will continue, stopping the disease from being able to awaken and grow.

Claire is doing well. She has her days but who doesnt. We are fortunate and blessed. She is going to give T-Ball a try (Shannon and another friend are coaching!) this spring and that should provide some classic Claire moments.

Please continue to think of and pray for Claire. Our next MRI is scheduled for early May and we believe that her MIRACLE will continue.

February 4th

2009-02-04T11:09:00.000-08:00

Claire's MRI results came back as stable. The enhancement is still visible and remains the same size, but has not grown.

We will post more details after a February 10th oncology appointment.

Thanks for supporting Claire.

Hoping For Great Pictures on Monday!

2009-01-29T19:18:00.000-08:00

Aunt Erin and Claire

Hello All,

We are again filled with hope and anxiety as we prepare for Monday's MRI. Claire continues to amaze but there are times we question symptoms and behavior. "Could that be a sign of tumor growth" creeps into our minds now and again. We are fortunate to still be asking these questions and make every effort to enjoy each and every day. This MRI feels particularly important in answering some concerns. If the disease is stable it would provide some comfort in understanding that Claire can present with symptoms that mimic tumor growth but in fact are not representative of disease progression (This MRI will be the 2nd 90 day period).

Please think of Claire on Monday. Your support has brought us this far and absolutely has impacted her journey.

I have posted a few pictures of Claire and Shannon will be posting some long awaited Disney photos soon ( Plus many more I am sure).

Thanks to all that have kept Claire in thoughts and prayers.

WE KNOW SHE CAN. WE BELIEVE.

Claire, Audrey, and Reese

Happy New Year

2009-01-07T10:27:00.000-08:00

Sorry for the lack of updated info. We had a busy Holiday season between Sacramento and Oregon. Claire is doing well. She has experienced some seizure activity but it appears to be under control with some adjustment to medication. She will undergo another MRI on February 2nd and we will provide a more informative update soon after.

MRI UPDATE

2008-11-18T13:25:00.000-08:00

The MRI result's provided good news. There has been no change to the questionable area of enhancement. Though we continue to wish the area would "melt" away, the medical team is quick to inform that no change is great news. The area could represent damages from prior surgeries and radiation, necrotic tissue, or other evolving by-products of treatment. It could also represent "sleeping" tumor but only time will answer these questions. The next MRI will be in early February 2009 (another 90 day's) and Claire will continue to be monitored by the Sutter Oncology Team.

Claire continues to shine. She is enjoying life and is always doing something to amaze us. At a recent trip to the Mall she caught site of Santa Claus (He does seem to be getting out earlier and earlier). He asked Claire what she might want this year and her reply was "I think I have enough stuff. I would really just like to visit my Audrey in Oregon". These type of statements are made on a daily basis by this most incredible child. (For those who don't know, Audrey is Claire's newest cousin who lives in Oregon).

Thanks so much for loving, hoping, and praying for Claire. It is working!!!

MRI Monday

2008-11-14T20:27:00.001-08:00

Hello everyone,

Sorry the Disney pictures have not been posted. They will be up soon. The anxiety and concern has begun to set in as we await MRI Monday. This will represent Claire's longest duration between pictures (90 days). We believe that Claire will continue her amazing recovery and that the pictures will only bring good new's.

Everyone who has followed Claire's story has played an important role. I dont know if you all really understant the impact you have had on our lives or how much the outreach of thought and prayer has contributed to her overcoming very dismal odds. It has been a critical part of our journey and Claire's fight.

We know how fortunate we are. We have met several famlies who have not been blessed with the same results. There is no road t0 follow for success with pediatric brain cancer, yet we believe Claire is blazing a path that may be shared with future patients. It all begins with HOPE and the love of family and friends.

Thank you. Please think of Claire on Monday morning and KNOW SHE CAN!!

2008-11-04T15:33:00.000-08:00

Claire and family recently returned from a trip to Disneyland. It was a great time and wonderful to see the smiles on the faces of Ryan, Claire, and Reese. The past two plus years have offered us few opportunities to vacation as a family and we are grateful to the MAKE A WISH Foundation for arranging this trip.

Photos will be posted soon.

2008-10-09T12:59:00.000-07:00

Claire continues to live life. She is enjoying kindergarten and play dates. We are blessed to have this time with Claire and for her current strength and health.

She is scheduled for a MRI on November 17th.

Thanks for checking in on Claire.

2008-09-16T22:22:00.001-07:00

Just a quick update for all. Claire has been doing well. We have had a few bumps since our last post, but nothing too concerning. She has experienced some "silent" seizure activity, had extreme reactions to what we think are mosquito bites, and her "feisty" personality continues to challenge us. In what has become our "new" normality, we dont sweat the small things.

We remain full of hope that she can continue this remarkable recovery. We know there will be new challenges ahead of us and will face them as they present themselves. We will continue to believe that the tumor has been "sterilized" by all of her treatment and await her next MRI in November.

A special day is approaching. On September 21st, Claire Denise Miller will be 6 years old!! What a gift.

Thanks for staying with us. Keep sending Claire love, thought, and prayer.

Nice Pictures!

2008-08-13T18:32:00.001-07:00

The preliminary reading on Claire's recent MRI are good. We were informed via a phone call today that the pictures appear to show stable "disease". The enhancement has not grown. Claire will be presented at Tuesday's Tumor Board and we will be informed of the group opinion soon after. The fact that the questionable area is remaining stable presents the possibility that what we are seeing is necrotic tissue or debris remaining from treatment and surgeries. Of course we would love to have the enhancment disapear, but this news is warmly accepted.

Claire is scheduled to start Kindergarten on Monday and is very excited to go to "Ryan's School". We will update with information as it develop's.

Claire is a very fortunate child to have the love and support of so many. I have said this before but all of your thought, prayer, and love has had an impact on her story. She has made miraculous progress and at this point is a medical mystery. The Doc's really dont have much to say as to how or why she is on the positive side of very dismal stastistics. They continue to warn us of the "high risk" for recurence but we look forward with a strong belief that Claire has work to do on this earth.

She is doing it!!

2008-07-30T14:08:00.001-07:00

Claire was "sprung" from the hospital. She responded well to treatment and the hope is that the infection does not return. If it does that suggest the infection is somewhere in her shunt line. They did " tap" the line and found the samples clear but the infection could be anywhere along the pathway so the result is not necessarily a firm clean bill of health.

She is doing very well and accompanied me to work on Tuesday for a few hours. Very special.

We now will await the August 12th MRI with hope of continued success.

Thanks.

2008-07-20T15:44:00.000-07:00

Claire was admitted to the hospital on Saturday evening. She awoke on Saturday not feeling so great, lethargic, and complaining of stomach pain. A low grade fever followed and she was admitted at 6pm. She underwent intitial tests to rule out "tumor" progression and/or shunt malfunction. Those test's revealed no visible problems. This morning she underwent an abdominal CAT scan and ultrasound with the possibility of absyss or appendicitis. No conclusive evidence was seen. At this point she is awaiting a visit from her neuro-surgeon to discuss potential shunt infection somewhere along it's pathway from brain to stomach. We are somewhat perplexed with what the diagnosis is. We will update when we determine her diagnosis and treatment.

"If it isnt one thing, it's another" seems to be our motto!

2008-07-17T20:52:00.001-07:00

A quick note for the anxious Claire supporter's. Claire is experiencing life with the heart and spirit that defines her (also with a touch of frustration and classic Claire moments). We still have day's where we find ourselves concerned with prognosis but accept this will part of our lives for as long as Claire beats the odds. Claire is scheduled for another MRI on August 12th and again the pictures will tell the story of her disease. We will believe that the enhancing area will continue to "melt" away or be stable.

Thanks for your continued interest and support. It continues to have such a large impact on our family and has obviously provided Claire many needed prayers and positive thoughts.

Do not stop. Stay with Claire and continue her MIRACLE!!

We Have SHRINKAGE!!!

2008-06-20T21:05:00.000-07:00

We received Claire's MRI preliminary results today and we could not have had better news. The enhancing nodule is now smaller and there appears to be no new area of abnormal enhancement. The enhancing area is now measuring 1.0 x 1.3 x 1.7 cm. We would have been elated with even stable disease. She will be presented at Tuesday's Tumor Board and we will meet soon after with the medical team to discuss details and opinions.

Thanks to all of you who keep Claire in your thoughts and prayers. She is a testament that Miracles exist in this world and we firmly believe all of you have had an impact in our amazing journey. She is so darn tough and posseses such a strong spirit. With that we will fight on and believe Claire will prove that sometimes the medical statisitics are wrong and with HOPE and the love of family and friends, Cancer can be the loser.

I KNOW SHE CAN!!

We will update soon with info regarding our meetings.

Believe in CLAIRE

2008-06-18T22:48:00.001-07:00

Well, we find ourselves awaiting Thursday's MRI with great hope and strong faith that the pictures will provide a long deserved breath of refreshing air. Claire has provided us with so much optimism lately that we can imagine nothing but good news. It is always difficult to prepare ourselves for MRI appointments, knowing how much the results can impact our mental state and predict disease status. This MRI weighs so much heavier than all to date. We ask for all of your prayer, love, and positive thought tommorrow.

CLAIRE IS AN AMAZING SOUL AND SPIRIT. SHE HAS FOUGHT WITHOUT FEAR. SHE HAS LOVED WITH NO CONDITIONS. SHE HAS NEVER ASKED WHY?

We believe there is light for her. We believe there is time for her. Believe with us.

May 28th UPDATE

2008-05-28T22:13:00.000-07:00

Hi All,

We arrived at Claire's May 12th Gammi Knife consult to be informed that after reviewing Claire's case on Friday, May 9th, the Tumor Board could not recommend Claire for treatment at this time. As I mentioned earlier, there was disagreement as to Claire's ability to tolerate chemo/and or Gamma Knife at the time. Gamma Knife is a form of radiation and the brain can only take so much without suffering severe damage. We examined some other treatment options but accepted the fact we would have to wait, watch, and hope for the best.

As of now, Claire will undergo another detailed MRI on June 19th. The hope will be that at that point, the enhancing area (suggesting tumor) will have had time to absorb the damage of the radiation therapy. We would expect to see measurable shrinkage or stable disease. We then will evaluate our direction but at least know we have the mentioned options of Gamma Knife and possibly a chemo regimen at that time. The other scenario would verify "alive" disease with visible growth. I will not allow myself to consider that so will take no time in discussing it.

Claire has experienced some great times and a few challenges since our last post's. We are trying to focus on the good and try and enjoy what we have been given. It is at times hard to just sit back and enjoy these day's without being reminded of the reality of what we are fighting and facing. But we try.

Thanks for the never ending support, thought, and love.

2008-05-09T14:12:00.000-07:00

Monday, May 12th

We all need a little sunshine right now and who better to brighten our hearts than Claire!!! ENJOY!

September 5, 2007 - 1st day of pre-kindergarten -

An incredible day for her and us too! Claire attended school for all of September and October. She's been back a couple times since but those two months were pure MAGIC! Chris and I are so grateful and appreciative to Carmichael Presbyterian Preschool, they are her lifeline to a normal childhood and they adore her and welcome her with open, unconditional arms every time - they bring out the best in Claire.

Just look at her smile - it's one of my very favorite pictures!!

Claire's 5th Birthday Party..... A Princess Party (of course). Three of her very good friends joined her in playing crazy dress up, putting on make up (no the girls aren't that good - elizabeth, the tiger, was at the circus prior to the party), toasting it up at a tea party, laughing loudly during limbo, and eating lots of popcorn and M&Ms while wearing their princess nightgowns and watching a princess movie. It's good to be FIVE!

Claire and Reese Cooking. Our favorite morning treat / activity.

Ryan's 8th Football Birthday Party - October 2007

We have completely lost ryan to football and sports in general. He has memorized the past 10+ years of U of O Football Media Guides' scores, facts and player trivia - Unbelievable! I challenge all die hard ducks to try to go head to head with him on ANY statistic or commentary ever printed about his favorite fighting duck team. And Reese - wow she is definitely a U of O football tight end contender for the 2026 season. Just check out the tongue, concentration, attitude and bow - she is perfect. Claire likes making up touchdown dances and wearing one of Ryan's 1387 football jerseys.

November 2007 - the day of Claire's 2nd tumor resection surgery. She brought a doggie toy for one of her bestest friends Millie. Millie, Hazel and Greta, Sutter Health ChildLife Dogs, make every hospital admission or visit as happy and enjoyable as it can be for Claire and all our family. "Her Dogs" are very, very special to Claire, as well as, all the childlife personnel - they are truly Angels in Disguise!

Christmas 2007 - Claire radiated christmas spirit during the entire month, participating in all the holiday festivities and traditions, and filling us with more precious memories. Her new princess bike from Santa was a real hit. It was a time of peace and joy for us all.

February 2008 - Disney Princess on Ice. An invitation from Chloe and Sheila that we will always treasure. The show was fun, but the best part was seeing every SINGLE little girl in the entire audience dressed in their favorite disney/princess costume - our girls were no different. It was a wonderful day.

April 2008. Ryan's girls every year dress in support of him and his team. This year St. Louis Cardinals - RED. GO RYAN!! It doesn't hurt that the snack bar has Reese's favorite - lollipops. If she even hears the word 'baseball', she automatically screams 'lady-pops'!!

Although we continue to struggle some days, we understand this evil disease and its commonly fatal outcome, so to be able to share with you almost 9 months of happy, carefree, loving and memorable moments is a real blessing for us. We know how lucky we are and we will be forever grateful for any day Claire warms our heart. It is because of your untouchable love and support that Chris and I are able to continue to respect her strong will and stubborn character and embrace her unwavering loyalty and cherish her deep, deep love. Thank you. Thank you.

2008-05-06T21:40:00.000-07:00

I wanted to UPDATE the last entry. As I mentioned, we had a 3:30 pm consult with the UCDavis radio-oncologist who provided the radiation therapy for Claire. She had a different opinion in regards to Claire's MRI Images. In brief, radiation takes time to evaluate. It damages the DNA of cells and over a period of time limits/eliminates the tumor cells ability to reproduce. UCD'S opinion is that it is too early to confirm the enhancement we are viewing is active tumor. We understand our lead oncologist's worries and aggressive approach to beating this cancer, but had underlying concerns with Claire's current health status in tolerating chemo at this point. The UCD consult re-affirmed our doubts and led us to re-evaluate direction. We have requested the UCDavis team to speak with our Sutter oncologist on opinion. We will then listen to both and come to a desicion on timeline. We are now scheduled for a Gamma Knife consult on May 12th with a tentative treatment date of May 22nd. This option remains a probable treatment. Assuming the consult with the treatment team provides a strong opinion on the benefits vs risk of the procedure, we will go forward with Gamma Knife.

I do need to mention that over the past 10 days Claire has experienced a decline in health. Our Doc's told us that this most likely would be the case(7-9 weeks out) after undergoing full cranio-spinal radiation. The dramatic decline has become more evident with each day. Nausea and severe fatigue have really set in the past few days. Sometimes in the daily fight you can lose perspective in wanting to cure claire -vs- the quality of day to day life. I believe this may have been the case today. Deep inside we had huge concerns in starting chemo treatment so quick. We will have more discussion in the next few day's and monitor Claire's physical situation. This will at least buy some time to evaluate and possibly, in preparing for Gamma Knife (which will require another MRI in 7-10 days), see a change in the tumor during that time period. If signs of tumor growth are still evident we will most likely agree to begin chemotherapy.

I will try to update as this process progresses.

Thanks for the never ending love and support!

MRI Results

2008-05-06T14:09:00.001-07:00

Claire's MRI was completed on Monday around 5:00 pm. We met this morning with our lead oncologist at Sutter to discuss results. The images provided a good news/bad news scenario. The good news is that there is no dissimination of disease and her spine is clear. We will not have pathology on her spinal fluid until Wednesday. The bad news was that the original enhancing tumor has actually grown. The growth is not substantial but the fact it remains viable tumor after the radiation treatment is of concern. More good news was that becouse the tumor has remained local she still has treatment options. Tommorow she will begin a planned 6 month chemo protocol using 2 new drugs (existing agents, just "new" for Claire). Our oncologist feels that she will tolerate this treatment. Time will tell. She has also been accepted as a candidate for Gamma Knife Surgery. Gamma Board met this morning and agreed that this is a good option for Claire's tumor at this point. We have begun the authorazation process and expect her to undergo this procedure in 2 weeks. Gamma Knife is a very finite use of radiation directed directly on the tumor, avoiding other brain tissue. Not normally used in treating S-PNET's but with Claire's disease remaining a local problem, it is now a realistic option. We will be meeting with the lead radio-oncologist at UCDAVIS today at 3:30 pm to discuss her opinion of the results.

So we continue the fight. We are looking at the positive side of the results, most importantly that Claire has options. We are extremely happy and anxious to meet the Dr.'s to discuss and schedule the Gamma Knife treatment. We will update soon.

May 4th, 2008

2008-05-04T21:25:00.001-07:00

As you all can imagine, the stress and anxiety level for Shannon and I are beyond measurable. We knew this day was coming but found way's to avoid letting it consume us. Some day's we can tell ourselves all seems good, but other day's it is hard to avoid noticing the subtle signs of potential disease progression. The fact remains that the MRI images will provide the answers. Our family is so gratefull for the support from all who have followed and cared. As I have said time and again, "Thank You" can not convey our appreciation.

I can not imagine anything but positive news. I ask you to believe with us tonight. Believe that miracles do happen. Believe that positive thought and prayer can effect outcome. Believe in Claire Denise Miller.

April 11, 2008

2008-04-11T14:46:00.000-07:00

Claire continues her recovery from radiation therapy. She seems to be having more good days than bad for now. She has had some difficulties with her "pic" lines due to the condition of her veins. Earlier this week she was experiencing severe pain in her arm (with the line) and they found a blood clot in that area. She underwent a procedure to place a new line in the other arm yesterday and we hope this one will hold up.

She is scheduled for a full brain/spine MRI on May 5th. This picture will determine the success of the radiation therapy. We feel that the results will be positive for Claire. She deserves an opportunity to experience more life. She has been through so much and has fought with such bravery and courage. We are inspired and amazed by this little girl everyday.

Keep her in your prayer and thought (with a little extra on May 5th!!).

Thank you all.

March 23rd

2008-03-23T18:56:00.000-07:00

A Happy Easter to everyone.

Over the past 21 months, Claire has always found a way back to the hospital for Holidays. This Easter proved no different. Yesterday Claire just wasnt feeling well. This progressed into the evening and early monring hours with Claire complaining of neck and stomach pain. We were unable to control the pain with home medications (and at 3:30 she presented with a high fever) so Shannon and Claire headed to Sutter at 4am. She was started on IV antibiotics while we wait for the blood culture results. Her counts were ok with the exception of red cells, which were transfused this afternoon. She is resting comfortably at this point.

Also worth mentioning, Reese turned 2 years old today!!

Thanks to all and keep the prayer and positive thoughts coming.

March 12

2008-03-12T20:38:00.000-07:00

Claire completed her radiation therapy on March 10th. Overall, she tolerated the treatment well. Upon completing the last dose of cranio/spinal radiation (this was administered over the last 3 weeks), she received a deserved helping of warm wishes from the UCD staff. She touched many lives in her brief care at UCD. She returned home that day with visible fatigue and overall not feeling well. As the day progressed she never showed signs of her typical recovery. Early in the evening she began to vomit. After 1/2 hour we called the doctor to begin preperation for a hospital admitance. Soon after Claire became unresponsive so we called 911. She was taken to Sutter and suffered several seizures in route. She was stabilized with medication and we were admitted to the PICU. Shannon and I were obviously very concerned and couldnt believe this was happening on the day she completed her radiation treatment. She remained in a unresponsive state with visible weakness to the left side of her body. She underwent a CT scan to rule out bleeding in the brain and we received good news shortly after. The CT showed no signs of bleeding. We would not be able to have an MRI scan until later Tuesday morning. The MRI would determine if her symptoms were related to tumor growth or possible radiation side effects. We settled into the ICU for an anxious and concerning wait. At 4 am we experienced another sign of hope. Our nurse came in to check vitals and Claire's bed sheets had become wet from a full diaper. She asked if she could change the bedding since Shannnon and I were both awake at the time. We agreed and assisted the nurse by picking Claire up from the bed. In typical Claire form she let out a cry and stated something like "NO, DONT DO THAT". Music to our ears. The mornig came and our specialists began to check in and we heard positive opinions from all. The MRI would be the determining factor and it was scheduled for 12 noon. Claire had improved enough to be moved to the main floor. The MRI preliminary result were relayed to us around 3:45 pm and brought us needed comfort. It appeared that the episode was not related to tumor, rather from irritation and swelling in the brain caused by radiation. They would treat Claire with medication to assist in reducing the edema. Her nausia was also attributed to the radiation treatment. Many times the effects of cranio/spinal raditation therapy intensify after treatment ends. I told Shannon that Claire has 9 lives and we are probably down to 3 or 4. It was also discoverd that Claire has an infection in her "pick" line so that was removed today. We will now wait for 48 hours of no fever or bacterial growth in her lood cultures before she will be released from the hospital.

She is improving every hour. The final MRI results were called in last night and were better than we could have wished. The tumor area is contained with visible shrinkage. This news is made more impressive due to the fact that radiation takes time to run its course. It damages the DNA to the tumor and over time (usually 6 weeks) destroys the tumor ability to grow. We will have our next MRI in April to determine the true success status of her treatment.

I try describe the events as best as I can but I know I leave out so much. Regardless, this is Claire's story and what an amazing one it has been.

Thanks for the thoughts, prayers, and love. Each on of you who have followed Claire's fight has made a difference and contributed to her being with us today. I know this to be true.

Thank You.

2008-02-19T22:48:00.000-08:00

Claire seemed to tolerate the initial few weeks of radiation treatment very well. Once we made the decision for full cranio/spinal, her doses were adjusted allowing a transition to the required treatment. As we entered the 3rd week, Claire began to show signs and symptoms of common side effects of RT. Her energy level decreased and she was more than willing to take naps. Her hair really has never had a chance to fully grow back, and in one night completely fell out from the radiated location. Then her appetite began to decrease. It all would soon be followed by the dreaded nausea and vomitting episodes. A tough pill to swallow knowing we had not even entered what will most likely be the most difficult phase of treatment. Claire would eventually require brief hospitalization for IV fluids. It was just our luck that she would need to be admited the night before she was scheduled to attend the "Disney Princess On Ice" event at the Arco Arena with 2 of her old "preschool" buddies. She was so excited when we told her she was invited to this " Mom and Girls" event. When we had to tell her she needed to go back to her "old" hospital and have a slumber party with Mom, you could see the disapointment in her entire body. We reassured her it would be a short stay and in true form she helped pack her bags for the overnight at Sutter. At 11:00 am on the following morning, I was surprised in the shower by a vibrant Claire Miller telling me she was "HOME" and ready for the "SHOW". I had other duties as our Reesy was to attend her first "real" Birthday party. We were very happy Claire was able to attend the event with her "buds" and grateful to the Franz and Lynch families for including her. So this morning began the final 3 weeks of treatment. Claire was excited because her "Little" Grammie Denise was in town for a visit and would accompany her on this morning to her "new" hospital (UCD). Claire can still smile at such things regardless of waking at 6am to report to treatment.

I am unsure of what is ahead. Stopped trying to figure that out long ago. I will hope for continued strength and courage. I will believe miracles happen.

Claire Miller

2008-02-08T20:14:00.000-08:00

Bumps Along The Road

2008-02-06T19:45:00.000-08:00

Claire began "focal" radiation treatment on January 28th. I had mentioned that there were concerns regarding the tumor progression. Claire's tumor is growing at a very quick rate and showing signs of the aggressive nature of pediatric PNET brain cancer. Although the location of the tumor recurrence has remained local, there are problematic changes. There is a visible extension of tumor into an area of the brain that circulates CSF(cerebral spinal fluid). The concern is that this presents a high chance for dissimination into distant areas of the brain. There is also a visible opening from the tumor/surgical cavity into a ventricle (another pathway for CSF fluid to circulate throught the CNS). The UCD radio-oncolgy doctors began treating Claire with the focal radiation treatment we wanted, but expressed a major concern on outcome due to tumor progression. When UCD agreed they were reviewing MRI film from Claire's last scan in early December. The scans that were taken on December 26th in preperation for treatment showed the questionable progression. UCD allowed Shannon and I some time to seek other opinions, including the Sutter Team who have been involved from the beginning. After much thought and research, we have agreed to move to Full Cranio/Spinal Rt therapy. We have done everything in our power to avoid it due to the consequences on a young brain. The facts and biology of recurring PNET tumors have forced our last hand. If we were to continue with focal rt and the tumor dissiminated (spread) we would have no more options. The size of Claire's targeted "focal" field is very large eliminating any opportunity to provide additional RT to other parts of the brain if the tumor spreads.

In no way are we viewing this fight over. Claire's tumor has not behaved as typical PNET. She did not recur until 15 months from presentation. The tumor has remained a "local" problem. She is with us at 18 months. But we could not ignore the recent aggressive growth and behavior of the disease. Claire has been so amazing and has displayed such a will to stay with us that we were comfortable with this decision.

In the next few day's, Claire will go through the process of preparing for the full cranio/spinal treatment. On Friday she will complete the initial boost dose to the tumor area. Next week she will begin the 5 week whole brain/spine treatment. UCD has agreed to treat her with a lower than standard dose for the full brain/spinal segment. There are ongoing studies utilizing a lower dose to the full brain/spine in an attempt to limit cognitive and other damage.

Continue to BELIEVE in Claire. We Know She Can.

January 25th

2008-01-25T21:53:00.000-08:00

We are sorry for the limited information on Claire's status. We have been trying to bring back some sense of a "normal" life and enjoy Claire. As we stated in the early January post, Shannon and I have spent much time consulting, researching, and analyzing treatment options for Claire the past several weeks. Our goal has always been to cure Claire's disease, but we have strong feeling on quality of life issues. Standard care for Claire has been, and still is, undergoing full cranio/spinal radiation. The effects of this treatment on a child are substantial. The fact that Claire is with us at 18 months is close to miraculous, and that her SPNET tumor has recurred 2x without dissimenation is "outside" the normal path of the disease. We were leaning towards UCSF for focal radiation treatment. The pediatric tumor Board at UCSF agreed to treat Claire with that option. We felt a small bit of relief knowing that she would at least be only a few hours from home and could come home on weekends. Radiation treatment is given over a course of 6 weeks, M-F. Within hours of the UCSF consult we were contacted by both UCSF and our lead Sutter M.D informing us that UC Davis had aggreed to provide the focal treatment. This was welcomed news as Claire could stay in Sacramento for the treatment. I have to say that even those who agreed to treat her locally expressed the fact that this is "non" standard treatment with a poorer chance for cure. We met with UCD radiation oncology and started the preperation process for Claire's treatment. Preparing for brain radiation is obviously a detailed process. Claire underwent a "masked" CAT scan followed by a more comprehensive MRI. The medical team then creates a "3D" image to precisely pinpoint the radiation doses. After Claires's MRI we were contacted and informed that the tumor had continued it's growth (as expected) and there was an area of concern. The UCD neuro-surgeon felt that the concerning enhancement had breached into an area of the Brain's cerebral spinal fluid. This would mean that microscopic cancer cells may be leaked into the fluid and "riding" throughout the CSF. After review UCD contacted us on Wednesday evening to express the concern that Focal may not be the option due to this finding. Shannon and I were a bit set back. Claire is scheduled to start treatment on Monday January 28th. At this time we are going forward with our desire to attack the disease with focal radiation. Claire will get radiation to the tumor bed with expanded margins of her right hemisphere ( the damaged area). She will also begin a 42 day regimen of oral chemotherapy. At this time she is strong and we believe she can tolerate this treatment.

I know I need not ask, but please send positive thoughts and prayers for Claire in the coming weeks. I believe that all those who care have had an impact on her survival to this date. There is no question in our minds that this amazing support "team" has impacted outcome.

The road we have traveled can not be explained. But you folks have helped us so much along the way.

I will end with saying that I have been blessed to witness the most amazing SPIRIT fight a horrible disease. I have learned more from a 5 yearl old child than you could attempt to imagine. What a gift.

Thanks to all of you.

2008-01-03T22:29:00.000-08:00

Hello all,

We hope all of Claire's support team enjoyed a Happy Holiday Season. Claire is at home with us and we are continuing the process in determining her care. It has been difficult but we hope to have a direction very soon. We continue to believe Claire will overcome the challenges she faces and that the medical options available will beat the cancer.

We ask that you continue to pray and provide positive thoughts for Claire.

We will provide a detailed update as soon as possible.

2007-12-19T20:51:00.000-08:00

Hello to all,

We are in the process of selecting a treatment plan for Claire. We have contacted many of the top medical professionals for opinions on Claire's case and are weighing our options. This is obviously a huge process with much stress/anxiety and thought.

Claire has remained with us at home and shows no signs of a child at a crossroads. She has recovered amazingly well with few problems other than minor pain or the occasional mood swing. The changing of her "pick" line is never pleaseant but she get's over the process at her own unique pace. She returned to her CPP preschool class this week and was welcomed back with big love.

We fear the disease that has settled back inside her brain and continue to ask for strength in making the right choice. Whatever we choose, treatment will begin on/around January 2nd.

So we will enjoy our Holiday and having Claire home this Christmas. She was unable to wake up at home last year and the holiday just didnt feel right. As much as you try to make things normal, everyone can feel it's not. I know that our other children, especially Ryan due to his age, could feel something missing last year.

Some of you have asked for some pictures so I have selected a few from our November get trip Santa Cruz. This was soon after Claire's initial relapse and prior to surgery.

We wish all of you a Happy Holiday Season. Enjoy each moment.

Continue your thought's and prayer's for Claire.

2007-12-12T22:42:00.000-08:00

Hello to all,

Thank you so much for the continued support. Claire's recovery from the surgery has been amazing and she has been progressing well. The speed at which she was able to function post brain surgery amazed many. She returned home with no complications.

Soon after Claire's discharge, Shannon and I began discussing next steps. The cancer had returned at 16 months but remained in the original tumor area. Her disease was not behaving as a typical S-PNET, showing no signs of progression to the spine or spinal fluid. We had been told on a prelimanary post-op report that all tumor was removed and the status was good. We discussed options and came to a desicion to request a treatment of highly focal radiation with oral chemotherapy. This is a "trial" treatment option which we researched and felt comfortable with. Standard treatment at recurrence would be whole brain and spinal radiation. The outcome from this treatment would be devastating to Claire. She already is facing challenges due to treatment and original injury.

On Tuesday, I attended a scheduled meeting with the Sutter team prepared to inform them of our desired treatment. We were fully aware that the Sutter team would most likely not be able to provide our chosen direction. Sutter is not a research hospital and tends not to go outside the "standard" of care protocol. We felt comfortable with alternative opionions from UCSF and Children's Hospital of Los Angeles. We were able to get a firm level of committment from our contacts that focal radiation was still a viable option. The cancer had returned but in the same area, and was resected.

I entered the lounge with the Sutter team prepared to state our case. Then came the news which I was not prepared for. I was informed that Claire's post-op MRI had a new "lesion".

I can not explain the emotion.

This news is obviously not good and very concerning. The new lesion is estimated to have appeared between her original pre-op mapping MRI and the post surgical MRI (13-15 days).

Shannon and I did not take this new's well. But we are committed to our HOPE. We have started the process of searching for a medical facility who will take Claire and allow us to stay with our original plan. CHLA is a strong possibility and we still will ask UCSF to review her case at Tumor Board. Sutter's position is to go with full cranio-spinal radiation, which does not secure a cure, or to move to a more palliative option. The quality of life issue is important to us and that's the direction we will pursue.

We will not stop believing that Claire will overcome and beat this. I ask that all of you stay with us and continue to pray and provide positive thought's for Claire.

2007-12-03T15:15:00.000-08:00

Claire underwent a 3.5 hour surgery on Thursday. The surgery was a success in regards to removing the entire "questionable" area on the MRI scans. Claire experienced no complications and is recovering remarkably well.

In meeting with the neuro-surgeon after surgery the news was not what we were hoping for. The 'questionable" area was tumor and is believed to be a reccurance of the original diagnosis (SPNET).

We will be meeting soon with the Sutter team to discuss options as well as inquiring with our other medical contacts (UCSF, St. Jude and Oakland Children's).

Thanks for the thoughts, prayers, and support.

2007-11-26T16:29:00.000-08:00

Claire is scheduled for surgery on Thursday, November 29th. She remains at Sutter but we are expecting her to come home for a few days tommorrow. We would have preferred a longer stay at home between hospitalizations but it is important to get in and take out the questionable tumor.

We will enjoy the quick stay at home with Claire and look forward to a successfull surgery on Thursday. We will stay positive and know that Claire can do it one more time.

Thanks for the thoughts and prayers.

Just our Luck

2007-11-18T18:45:00.000-08:00

Hello all,

Well this ride continues. As most of you know, Claire was scheduled for the brain surgery on Thursday, November 15th. After a few day's away as a family we returned to Sacramento on Wednesday to prepare for the surgery. Claire was admitted Thursday morning and was in great spirits and seemed physically strong. With family around her in the pre-op room she laughed and played arts-n-crafts. After informing her Aunt Erin of the need to use the potty she returned to her bed. Soon after she began with an episode of the chills and became increasingly agitated. Shannon and I could not believe our eyes and before heading to the pre-op MRI she presented with a fever. On we went to MRI with Claire continuing a decline in health. Ourt neuro-surgeon met us in MRI and with a brief discussion she was put to sleep and taken into the MRI (from where she would head directly into the O.R). Within minutes the surgeon came to Shannon and I to inform us that Claire was very hot (103) and at the end of the MRI she would be admitted to the 6th floor oncology wing and the surgery could not be performed due to the circumstances. The news was hard to swallow having prepared ourselves for the surgery. It was in Claire's best interests but still difficult news. So Claire is now once again residing on the 6th floor to battle a new infection. We did have Claire's broviac removed on Thursday with the concern that the broviac may be harboring the infection.

We will update when possible. The surgery will most likely be on December 3rd, but we have learned that there are no guarantees.

Keep her in your thoughts and prayers.

November 5th

2007-11-05T20:45:00.000-08:00

Claire was admitted to Sutter Memorial early on Wednesday, October 31st. As if the news of a possible recurring cancer and surgery was not enough, she presented with a high fever not long after the last post. Claire did not have a low white blood count at the time so we attempted to manage the fever with tylenol. After peaking at 103 at 5:00 am, we called the doc to prepare for her arrival at Sutter. The process that we are so familiar with began again. She was hooked up to general anti-biotics and IV fluids and blood was drawn to culture for infection. The general rule is a 48 hour observation for bacterial growth. At hour 48 Claire was clear and preperations began for the Monday surgery. As she and Shannon were set to head down for the initial pre-op MRI a nurse entered informing them that the culture was growing and positive for staph. Being mentally prepared to have your child undergo brain surgery is a tough process. Getting there and having a delay is flat torture. So Claire will now undergo a 10-14 day regimen of high dose anti-biotic to clear the infection. As much as we want to get the questionable growth out, the risks are too high for surgery at this point. She will be monitored and when her neurosurgeon and oncology team feel it is safe,she will have the procedure.

On a positive note, Claire was able to come home tonight. We were able to locate the needed anti-biotics in a form that the team felt comfortable with for home treatment. It was not the favored choice by the Doc's but we felt strongly about getting Claire home for a stay before going back for the surgery. She certainly is rigged properly with her double broviac and GT feeding tube for home care.

It is a tough time with much anxiety and thought. But as always we will focus on the positive's and Claire's amazing spirit. We will update when we can.

Believe in Claire and KNOW SHE CAN.

A Night For Prayers

2007-10-30T22:22:00.000-07:00

Hello all.

Shannon and I had made some huge decisions in the past weeks. Ultimately we chose to inform our medical team that we would end maintenance chemo. We had begun the planning process for Claire's next steps and had a scheduled MRI this morning. We recieved a phone call at 8:45 pm informing us that the MRI showed some new enhancement that was not seen on prior MRI's. It was the call we have dreaded. Over the next several days Claire will undergo more tests and MRI's preparing her for a monday brain surgery to remove the questionable "nodule". It will be a full craniatomy but the initial phone conversation with our lead oncologist tonight was positive. She had met into the evening reviewing the pictures with Claire's neuro-surgeon, and he feels confident in the ability to remove the possible tumor with minimal risk to Claire's function. I dont know what else to say other than please pray and give positive thoughts to Claire and our family. I can think of nothing but a positive outcome showing that the enhancing growth is necrotic scar tissue.

We will update when we can.

October 15th

2007-10-15T20:42:00.000-07:00

Claire received round #5 as scheduled on Monday. The visit with Dr. Jonathan Finlay on Friday at Oakland Children's Hospital provided very good information and a strong argument for stopping maintenance chemo therapy. It is a very scary and anxious time as we debate what is the best choice for Claire and the healing of her body. Chemo therapy is a toxic process and there many complications that occur when given in the doses Claire has been given. There is a point that the risk is more than the reward. She continues to be the fighter and we continue to be amazed at how she handles adversity. Shannon and I will be meeting with the Sutter team on October 23rd and will make a decision at that point.

I am Sorry to be short on info but will give more details soon.

Thanks for your continued support.

October 7th

2007-10-07T21:43:00.000-07:00

Claire will be admitted on Monday morning to Sutter Hospital. She will undergo surgery to replace the Broviac lines in her chest which were removed 2 weeks ago. The lines were a source of infection. She has enjoyed life without her tubes and was able to take a shower for the first time in over a year ( a very special moment for her). She will then begin round #5 of maintenance chemo. We continue to struggle with the chemo but we have agreed to go one round at a time as we progress towards the scheduled nine rounds. Shannon and I will be heading to Oakland Childrens Hospital on Friday to meet with an MD. who is very well known in the Childrens Oncology group and has done a tremendous amount of research on pediatric brain cancer. I have communicated with him via email and he has some thoughts that we want to discuss in person with him and are having him review Claire's case file. Somedays are harder than others and Shannon and I continue to hope the postive progress continues. We are constantly analyzing Claire's actions and behavior and sometimes it is overwhelming. You seem to live in a state of constant worry and wondering.

Please keep up the prayer and thought. We feel the support and it has carried us to points some thought were not possible. Thank you.

September 19th

2007-09-19T21:13:00.000-07:00

Claire has been enjoying life at home for the past few weeks. As we had mentioned in the last post she was hospitalized due to some very serious types of infection. Shannon and I have again been doing some serious research and thought on the pros/cons of continued chemo. Claire is not recovering as well and there are opinons suggesting to stop due to toxcicity. She has been undergoing chemo for 14 months which is outside the standard of treatment. The agents used to fight her cancer are some of the most toxic and destructive to the body. The standard care would be to radiate but we have done all we can to avoid radiation to the damage it would cause to her young brain.

Some positive's are that Claire, when felling well, has been able to attend her preschool class at CPP. It is awesome to see the excitement and happiness this has given her. And this Friday, Claire will celebrate her 5th birthday!!

Recent tests have shown that infection is still active in her broviac ( a double lined tube in Claire's chest which is used for drug induction, transfusion, and other meds). A decision was made today to remove the broviac line tommorrow. She will undergo a minor surgical procedure to remove the line and should be back home in the afternoon. We have not decided on whether we will choose to replace the broviac next week or select another type of "hardware" for ease of induction of drugs and other needed products. This will delay the scheduled 5th round of maintenance chemo for another few weeks.

We have many decisions in the weeks ahead and we will do what we think is best for Claire. She is a amazing little girl who has the heart and soul of a GIANT. I am proud to say I am her Dad.

We will update as we can. Thanks for all of the support. You have no idea how it has kept us afloat.

August 29th

2007-08-29T20:23:00.001-07:00

Hello to all of Claire's Team,

Claire was admitted to Sutter on Sunday evening to due to fever. We were hoping it was just a viral infection which would have allowed her to return on Wednesday. But as it seems to go when you are fighting cancer, the results of her blood culture were positive for staph. We were still hopefull for an early discharge as Claire's blood counts were ok. Over the past few day's her blood counts have dropped to a point requiring product transfusion and she has experienced a few other complications along the way. The blood culture's continue to come back positive for infection and now she has become neutropedic (low white blood cell count: 500 measurable cells or less). We will hope for progress in the next few day's.

Please continue to pray and think positive for Claire.

Thanks for the continued support.

SUPER CLAIRE!

2007-08-15T19:37:00.001-07:00

Claire had her latest MRI on Tuesday. It was the longest period between pictures to date and we were very anxious awaiting the results. The scans were good and were read as stable with no sign of growth or spreading of disease. She was admitted to Sutter this afternoon to begin round 4 of maintenance chemo. She will be at Sutter until Friday. We are feeling so very blessed with Claire's progress and so full of hope for a continued miracle.

Thanks and please keep the positive thoughts, energy, and prayer for Claire.

Hurray for our SUPER CLAIRE!!!

2007-08-01T00:53:00.000-07:00

Hello all,

Sorry for the limited updates. I can not sleep tonight and felt the need to just give a quick thought. July 29th was the one year mark of Claire's tragic event. It is hard to believe that a year has passed. During the initial day's there were few that gave us any hope of making it out of the ICU. But here we are. Please continue your thoughts and prayers. I believe your support, prayer, and following has had such a positive impact. The strength you have given us is not measurable.

CLAIRE WILL BEAT THIS. I KNOW SHE CAN! I KNOW SHE IS! WE BELIEVE SHE WILL!

July 17th

2007-07-17T21:11:00.000-07:00

Claire began an early 3rd round of chemo on July 13th. Our medical team decided to try Claire on a 4 week cycle (vs 6week). She tolerated round 2 very well and it was inspiring to watch her shine. A few bumps along the way but she really was amazing. This 3rd round includes the drug cisplatnum which is a very tough chemo. She has shown fatigue and the nausea is creeping back on a regular basis. But as always, Claire seems to find a way to chase that miracle. We will have another MRI in early August, prior to round 4. Shannon and I try to enjoy each and every day but at times it is difficult not to look ahead to the pictures which will determine our destiny.

We continue to be amazed at the support and outreach from friends, family, and our special community. Believe me when I say we could not have come this far without your support.

Keep BELIEVING IN CLAIRE! WE KNOW SHE CAN.

Thanks.

June 29

2007-06-29T16:40:00.000-07:00

Just a quick update. Claire is tolerating the adjusted chemo much better than round #1. We are entering week 3 of the 2nd cycle and are feeling positive about the new protocol. Claire's spirit and fight are evident every day and we feel blessed to have her with us.

We still have long battle ahead and appreciate all your thoughts and prayers. Claire is beating the statistics and the love and support she has received is a contributing factor.

Thanks is never enough.

June 14th

2007-06-14T16:36:00.000-07:00

Claire's last MRI showed no change which was good news. She was admitted to Sutter Memorial on Tuesday to begin her 2nd round of maintenance chemo. The chemo protocol has been adjusted with the goal of improving Claire's ability to tolerate the treatment. She has been through so much and her body is fragile. It was difficult to see her head back for treatment as she had been doing well recently. We dont know how she will react but hope for the best.

I know I need not ask, but keep her near the top of your prayer's and continue to believe in Claire. If anyone can beat the odd's it has to be our Claire.

June 3rd

2007-06-03T21:56:00.001-07:00

Hello to all.

As most of you are aware we had recently come to a point where Shannon and I began researching treatment options for Claire. She did not tolerate the 1st round of maintenance chemo well. We spoke with UCSF, St. Jude, and our team at Sutter. There were different opinions and at a point we were leaning toward a 2nd brain surgery. In the midst of this research, Claire got an infection and was hospitalized for 9 days. She has returned home and is feeling and looking better. She will need some recovery time at home before beginning any treatment. At this time we are most likely going to attempt an adjusted maintenance chemo protocol. Claire underwent a brain/spinal MRI on Friday and we will have prelimenary results on Monday. The MRI will determine whether we have the option to continue chemo. If any growth or new disease is visible the options become limited.

Keep Claire in your thoughts and prayers. We hope for positive news regarding her scans. Claire is an amazing spirit and has beat all odds to date. WE BELIEVE she will continue beating this disease.

Thanks

May 13th

2007-05-13T21:41:00.000-07:00

Hello to all Claire's support team,

As many of you know, Claire's April MRI showed no growth or spreading of the disease.

Claire is doing ok. She had surgery last tuesday to insert a gastric feeding tube. She has had some tough times recovering from the first cycle of Maintenance chemo. She was not eating enough to maintain energy or a healthy weight so the gt tube was our option to maintain health. She was scheduled to begin round #2 of chemo on Saturday but her body is not ready at this time. We will be meeting early this week with the Oncology team to address strategy/options.

Sorry for the lack of updates. I hope to have positive news soon. Shannon and I sincerely appreciate the continued support and interest in Claire's progress. I can not say that life is normal or easy for our family. We try to stay positive and remain hopefull for a miracle.

Keep believing with us that Claire will overcome.

Thank you.

April 20th

2007-04-20T17:35:00.000-07:00

I am sorry we have not been keeping everyone updated. As you all know Claire is in the first of a scheduled 9 cycles of maintenance chemotherapy. Shannon and I have not known what to expect and it has been challenging at times. Claire has had a difficult time maintaining her platelet cell count and has been transfused multiple times. Otherwise she is tolerating the therapy ok. She has difficult days but that is expected. We are very anxious as we prepare for her MRI scheduled for April 25th. We are hopefull for a positive image showing no change or spreading of the disease. We both look at this next test as a significant marker to Claire's beating the odd's and being able to continue in the maintenance chemo therapy.

As always, keep her in your thoughts and prayers. Your support has helped us stay strong and know we are not alone in this most difficult time.

Thank you.

March 29th

2007-03-29T21:05:00.000-07:00

After a lengthy stay at home, Claire returned to Sutter Memorial late Sunday due to a high fever. It turned out she had an infection and has remained hospitalized receiving antibiotic treatment. This is very common for patients who have received high chemo doses for extended periods. It brought back the reality of Claire's ongoing battle. We have chosen to undergo a 9 cycle (12 months) maintenance chemo protocol with the hope that this will keep the disease from growing and or spreading. She has beaten the odd's and with all the continued support, prayer and positive thoughts there is no reason to believe the positive results will end. We have chosen this option -vs- full craniospinal radiation therapy which is considered the standard of care. With much thought, we are looking for the best quality of life results for our Claire. The treatment should not be as brutal on her body but with what she has already undergone we expect some difficult periods. As of today, we expect to begin cycle 1 on Sunday. All of this treatment will take place at Sutter Memorial.

Keep believing in "Super" Claire.

March 21, 2007

2007-03-21T21:12:00.000-07:00

I have heard from many that they are awaiting details on Claire's status. I am hoping Shannon will have time this weekend to give a detailed report. I can share with you all that Claire is feeling great, enjoying the health that comes when given a break from the high doses of therapy she has undergone.

Thanks is never enough.

Keep on thinking, praying, and believing in Claire.

I Know I Can

2007-03-18T20:40:00.000-07:00

Crosby Loggins and Band wearing Claire's "I Know You Can" bracelet at a recent performance

March 15, 2007

2007-03-15T21:50:00.000-07:00

Another quick update for all. Claire is doing well and enjoying life at home. We are about 4 weeks out from her last treatment and again are facing the unknown. As mentioned earlier, we were expecting a 2nd surgery. But as seems to often be the case, we were wrong. Claire's neurosurgeon presented his opinion to Shannon and I on Wednesday. In brief, the risks are greater than the reward. Next week we will meet with the Oncology team to determine the next treatment. It will most likely be a protocol of maintenance chemotherapy for a period of 6-12 months. Claire has beaten the odds so far and we see no reason why her "winning streak" can't continue. Each day, month, year, that we can avoid radiation therapy will improve the cognitive outcome for her. It is our hope that she will overcome this disease without having to undergo radiation therapy. If anyone can be that minority statistic, it will be Claire.

Thanks to all again. Hard to believe 8 months have passed since this began. We couldnt have gotten this far without all the support, prayer, and positive thoughts. Please continue as it has made a difference.

March 1st, 2007

2007-03-01T20:00:00.000-08:00

A quick note to Claire's team. Claire returned home last Wednesday. Again showing her amazing spirit, beating another challenge. She underwent her MRI scan yesterday and the results were positive. The questionable enhancement is still there, but with no signs of growth or spreading of the disease within her CNS. That is good news. We will be meeting soon with our oncology team to discuss our options. She will most likely undergo a 2nd brain surgery to determine the pathology of the abnormal tissue/tumor. It still is a day to day battle for her but I sense some light to our darkness. We feel blessed and are so appreciative of all the love, support, and prayer. She is staying true to her amazing spirit with a courage that has never wavered.

Thank you all and KNOW THAT CLAIRE CAN AND WILL.

February 19, 2007

2007-02-19T17:21:00.000-08:00

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.

2007-02-13T14:13:00.000-08:00

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

2007-02-07T21:35:00.000-08:00

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

2007-02-01T20:38:00.000-08:00

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.

Wednesday, January 24th

2007-01-24T19:50:00.000-08:00

We apologize in not getting info in regards to Claire's status. We know how many of our "Team" are awaiting news. Claire's MRI did not show any sign that the tumor has spread but the results showed no signs of improvement from the previous December film. She will be reviewed at Thursday mornings tumor board at UCSF and we will consult with our team of physicians soon after. I wish I could share more. It is positive that there are no signs of growth but her continuation with the UCSF protocol is based on a visible shrinking of the tumor area. We attempt to stay positive and know the fight is far from over. We have options and are committed to finding the best treatment for Claire throughout the process. I know Shannon will be writing soon.

Continue the prayer, love, and belief that Claire will overcome.

Thank you all.

Friday, January 12th

2007-01-12T21:50:00.000-08:00

I know so many of you rely on the site for information on Claire. We have been busy enjoying Claire's time with us at home ( with a few hospital visits) and Shannon has not had time to update. Claire's recovery from her 2nd round of high dose chemo/stem cell rescue has gone well. It has been very special to have her home with us for an extended period of time. We anxiously await her January 22nd MRI, which will determine the status of the tumor and options for Claire's treatment. Keep her in your prayers and positive thoughts.

2006-12-27T13:13:00.000-08:00

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?

2006-12-18T12:41:00.000-08:00

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!

2006-12-13T21:02:00.000-08:00

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.

November 28th

2006-11-28T22:01:00.000-08:00

Claire returned home from UCSF on November 21st. Her first round of high dose chemo with stem cell rescue at UCSF went well and she again showed her amazing strength. She was able to stay at home until Sunday evening when her lethargy and a fever sent her to Sutter Memorial to begin a period of recovery in the hospital. We expect her to remain hospitalized for 10-14 days. As always, keep her in your thoughts and prayers.

Thank you all so much for the love and support. It means so much to our family.

2006-11-17T16:54:00.000-08:00

Friday, November 17, 2006
The week of Monday, November 6th began with the receipt of a promising gift from Claire and ended with wonderful and heartfelt blessings from family and friends that left us speechless and in tears as we reflect on the charitable event. Our visit to UCSF proved successfull as our "I think I can, I know I can...Super Claire" surpassed the minimium number of stem cells required to start the high dose chemotherapy protocol that holds ALL our HOPE for a full childhood and long life for our angel. The halls of UCSF were bursting with young energy and talent, yet command a high level of respect from their long history and reputation of medical excellence. Although the harvest resulted with a positive outcome, it was not complete without some agony. Claire has been nothing but a model patient throughout this entire ordeal and has endured what must feel like a constant personal violation with powerless vulnerability and exposure by all the healthcare professionals trying to cure her. As a parent the role and responsibility to your loved one during their illness is endless and sometimes just as exhausting and frustrating as I'm sure Claire experiences. After three days of continuous medical intervention, Claire beat me to it by yelling, screaming and throwing her arms around exclaiming, "Everyone - Leave Me Alone!!". The endearing phrase "leave me alone" has always had a comical nature to it in our family as it was originally showcased and used often by Claire's Auntie Erin as a young, head-strong child and teen, but when repeated by Claire with such emotion that day, I felt nothing but pure empathy and instead of trying to comfort her or persuade her to stop....I joined her. It took both of us a couple of quiet hours - untouched - to regain our composure and interact with people again. The battle to wellness is not limited to just fighting the actual disease but not mentally surrendering to the endless monitors, tests and procedures necessary to complete the act. Claire woke up in Sacramento on Wednesday, November 8th and without a pause requested to see and play with Reese-ee and Ryan. They remain her primary thought and yearning. As Claire had a quick blood draw at the hospital on Wednesday afternoon, the nurse commented in disbelief of Claire's apparent selflessness as she contemplated on the BEST cartoon band-aid selection for her two siblings without a choice for herself. Saturday morning was very special for Claire as she brought Ryan his water bottle after each quarter of his raining soccer game with pride. The second or younger child in the family ends up spending a lot of their time playing at their older siblings' practice or game. Attending brother's soccer game was pretty significant for Claire and to feel the soft rain drops on her head again was magical too. Saturday night for Chris and I was equally as spectacular and memorable. We were touched and honored that so many new and close friends and family took the time to celebrate Claire and sponsor the "Claire Miller Foundation". We sincerely appreciate the enormous effort and sacrifice it took to organize the event led by Tim and Karen Reilly, Dan and Gretchen Stecca and Kevin and Loretta Miller. To all the participants, contributors and loved ones - you have filled us with unparallel strength and courage to continue to love and honor Claire through her next treatment cycles and inspired an unconditional belief that miracles don't quit half way - "I KNOW SHE CAN!". Thank you deeply for your unwavering support and most importantly for embracing and cheerishing our Claire and keeping her close to your heart with positive thoughts and prayers. We feel you!! And we continue to need your well wishes and love as Claire started round one of the three high dose chemotherapy treatments today at UCSF. She ate 7 Oreos, 4 packages of Captain Crunch, 2 bags of animal cookies, and a chocolate crossiant from Starbucks all while receiving the two new chemotherapy agents that will soon show their power and ability to destroy... unfortunately not just the evil tumor in her brain. She gets two days of chemotherapy, a day of rest and then on Monday her body will be rescued with her own transplanted stem cells. We are crossing our fingers that she reacts well and is absent of any fever on Tuesday so we can travel back home. It is anticipated that her white count will be zero for at least 10-14 terrifying days and we hope she can fight that war close to daddy, Ryan and Reese in our Sacramento hospital. Her body's reaction and response is unknown and all we can do is HOPE and BELIEVE that she possesses the necessary will, determination and passion for life to keep our beautiful world bright.

2006-11-05T08:13:00.000-08:00

Sunday, November 5th
Our sweet angel is sleeping soundly this morning in her parent's warm and cozy bed after raising both arms up high in the air and shouting with pure joy and elation yesterday afternoon....." I'm HOME, I'm HOME!!!". It was a wonderful surprise and treat when her physician announced she could go home and perfect timing too, we walked in right as the Ducks kicked off in Eugene with brother Ryan in attendance. Her homecoming this time truly lifted her and sparked a much needed firework and smile in her parents as well. The past 10 days in the hospital waiting for her precious body to repair itself and slowly come back was by far the safest and kindness to Claire as compared to her two previous post chemotherapy returns, but for some reason Claire and I found ourselves in a small slump. Whether it was a factor of boredom, anticipation or just a little despair, we were both a little down at times. This recovery was filled with some unfortunate emotional challenges and an underlying anxiety so strong it ate away at us. Survival from cancer is largely dependent on the ability to remove or kill more than 90% of the tumor initially, through surgery or radiation, and then destroy any microscopic cancer cells that might have spread with chemotherapy. Claire's rare and deadly case does not allow for the administration of standard medical care. The inital trauma and injury to her brain from the hemorrhaged tumor was extensive and as we have described earlier, it is a divine miracle that she laughs with us today. Her right side of her brain was nonexistent and pushed completely to her left side, looking hopeless of a full recovery. The initial MRI scans of her beautiful brain after her life saving surgery was shocking and absolutely debilitating to view. At that time, we, along with her neurological-oncology team, choose to attack her cancer, which was not clearly identifiable due to the additional swelling, blood and other byproducts from the injury, with a new chemotherapy protocol developed by one of Claire's local physicians, Dr. Nora Wu. Claire has received three rounds of an innovative and promising formula of chemotherapy agents in an effort to allow her brain to naturally recover and isolate the remaining tumor. The very best outcome expressed by her medical team from this treatment protocol would be only to stop the tumor from growing and try to perform a second surgery to extract the remaining mass in time. The chemotherapy formula has proven sucessful beyond everyone's wildest expectations as the tumor did not spread AND it actually decreased in size from three months ago, topped with a neurological recovery that is a real medical mystery. Unfortunately the remaining tumor mass is very deep and located in a crucial and life threatening area of her brain. We learned on Thursday that the risk to Claire of a second surgery is far greater then the small benefit of extracting only some of the remaining tumor. 100% resection of the evil mass is not possible. Some in the medical community believe without immediate full brain and spine radiation to kill the remaining tumor would leave Claire with no chance of survival as the mass will return uglier and deadlier then before. But the pediatric oncologists at UCSF are willing to accept Claire, with Dr. Wu's endorsement, in a very experiemental and fairly unknown treatment option with hopeful optimism due to the tumors current response experience and outcome. Claire's own healthy and freshly regenerated stem cells will be harvested tommorrow at UCSF taking a day or two to collect the necessary number of cells required. After a small break allowing Claire to regain some strength and a renewed state of health, Claire will return to UCSF to receive a very high dose and new chemotherapy formula, independently administered would be too toxic and prove fatal, but her body will medically be rescued with the transplant and reinsertion of her own stem cells. She will undergo three of these high dose chemotherapy rounds with the hope and belief that it will kill more of the tumor and be followed by local radiation to the tumor bed instead of full brain radiation. Full brain and spine radiation necessary to eradicate Claire's tumor, would severely and significantly effect her remaining quality of life. Radiation to such young and developing brains under approximately 10 years old, deteriorates the brain's cognitive thinking along with other deficits. We feel since Claire is such a miracle to date, how can we not give her the opportunity, to hopefully survive, but survive as the loving, intelligent and independent gift she is now. We think she has the abilty to rewrite the medical books and investigate further use of stem cells in cancer treatments. If this treatment protocol deems unsuccessful at anytime during the next few months, full brain and spine radiation will continue to be an option. The amount of research, discussion, contemplation and risk assessment has been exhausting and attacked by every family member involved. Claire's team is not limited to the medical professionals in Sacramento - she has touched family and friends near and far, and inspired complete strangers throughout the world to BELIEVE and fight with us. She continues to bring joy and simple pleasure to us daily, expecially throughout the difficult and emotional time experienced over the past week. I had to release a few tears Friday night when I thought Claire was sleeping, only to have this petite and soft hand reach out and caress mine and be serenaded with the Barney theme song by her sweet voice...."I love you, You love me, We're a happy family, With a great big hug and a kiss from you to me, Won't you say you love me too!". She is perfect!. Her desire to play hide-n-seek everyday was refreshing, untouched that she is wrapped in IV and feeding tubes hanging from a overly large and noticable pole not to mention confined to a 10 x 10 hospital room but the game is no different to her and definitely enjoyable to all participants. Although, now fed through a nasal feeding tube, to eliminate her nutritional rollercoaster ride, she requests only "chocolate milk" (our key word for the Boost Energy Drink) to be administered, whether she can taste it or not chocolate will always be her preferred food - again she reminds us, the true Claire has been unaffected by this horrific disease. We embark on a new and frightening journey today but have learned during this powerless struggle, to stop, listen and touch Claire as much as possible as she provides an endless amount of hope and strength to all that come in contact with her. UCSF should be honored to get to met and experience Claire.

October 30th

2006-10-30T17:52:00.000-08:00

Claire returned to Sutter Memorial on Wednesday, October 25th. The effects of the chemo kicked in and we knew it was time to return. She is again being cared for in the isolation unit. She has received red blood product transfusions to help boost her counts and as of today remains void of any measurable white count. She will return home when there are signs of a increased white blood cell count. She has been in good spirits, as always, and we will update you with more details soon. I know you all look forward to Shannon's post but mine will have to do for now.

Thanks for your continued support. We appreciate you all so much.

2006-10-20T19:52:00.000-07:00

Friday, October 20, 2006
When Claire was home it was fantastic but came and went too quickly for us. She ended up home for 12 whole days - unbelievable!! She played, laughed and enjoyed life again, each day was full and memorable. We had a family celebration for Ryan's birthday and Claire ran for touchdowns during our backyard football scrimmage, initiated a game of duck-duck -goose with the neighbor kids that visited and immediately picked up a basketball and lined up to shoot 3 pointers at Ryan's new basketball hoop. She was on fire! Claire hosted a small dinner party with a few of her close friends during her stay home too, there is nothing more soothing and infectious than young girls giggling together. Late Monday, October 9th, we found out that Claire would not start her 3rd round of chemotherapy on Tuesday as planned due to a delay in scheduling some diagnostic tests that are required prior to treatment. As we rejoiced in the ability to spend a few extra days with Claire, it was met with quiet reservation too. The remaining tumor mass haunts us daily and we feel it is an evil being that will thrive on any opportunity to regain strength and live, so although there was no real medical threat to postpone treatment by 3 days, as parents we were scared. Our last two days home before her next hospital admission were difficult for us. Claire was living strong as before and we were happy again until on Wednesday we had an urgent meeting with her oncology team to discuss some new research and non standard protocol for children with brain tumors currently administered by University of San Francisco. If we wanted to explore and discuss this high dose chemotherapy / stem cell transplant option, we needed to spend our last healthy day with Claire in San Francisco, also missing Ryan's bowling birthday party with 12 wild first grade boys. It was like pouring salt on our wide open wound. Our family and friends stepped up without a thought like they have done consistently for us since this nightmare began and put on a party for Ryan filled with cool new high fives, silly bowling strike dances and birthday cake in the face - a 7 year olds dream. Although the news that Chris and I would not be able to attend Ryan's party was met with tears and disappointment, he was king for the day and rallied in the glory like he always does. Our meeting in San Francisco was very tough for me. I had found a place of strength and courage that I could maintain as long as I only dealt with Claire's current health battle. When discussions of long term outcomes, survival statistics and quality of life compromises start I literally melt. It is too terrifying to overcome. I understand and appreciate the field of medicine and the reality that physicians, especially pediatric oncologists, walk a tight line between providing the facts with hope and displaying too much optimism that could ultimately prove fatal, but as an already fragile parent, dreading the return of a vibrant and perfect child to chemotherapy the following day, the UCSF physicians' news and meeting was too much for me. There have been numerous times in my only 7 years of parenthood that I have stopped and thought... "this is the best time", only to have 3 or 6 months go by and Ryan, Claire or Reese begin a new phase of growth and childhood that makes me recant my earlier statement and believe yet again - "this is the best time". I love when they are small babies and fill you with such warmth from their adoring stare as you know you are their whole world. I love when they want to explore and their individual character and personalities starts to shine. I love their first playdate, sports team and school performance. No matter how good it is though at the time, I truly shake with excitement thinking about the next day or experience with them. As the quiet tears dropped steadily from my eyes during the two hour drive home that Thursday, all I could think of was how I would give anything - absolutely anything - to stop time, because "THIS is the best time". Ryan is still full of innocence and possesses the amazing ability to turn the most insignificant event or item into something so GRAND you are left with only envy. Reese is a bundle - a plump 20 pound bundle - of sweet candy you want to grab, taste and hope it is everlasting and she, like a golden retreiver puppy, can draw anyone with a beating heart, into their pure joy and happiness just by their presence. And our Claire, our Claire is alive and still wants to hold hands with her parents, is left speechless by princess Cinderellas' company, and can spend the entire summer day at the beach saying "Mom / Dad watch this!!". I regained my personal hope on Friday and was able to take Claire back to the hospital only because I am surrounded by family, friends and Chris that BELIEVE with such power and conviction it is emotionally contagious. She underwent the last week of another hard and heavy dose of several different chemotherapy agents and kept a smile on her face through most of it. We have adopted a dear and loving 10 year old girl with leukemia that was Claire's roommate during her last two hospital stays. Her childhood and family have not been kind and her grandmother is raising her and some of her siblings to her best ability. Unfortunately, she is left alone and scared a lot. She calls Claire her sister and we try to comfort her as much as possible. She was in a considerable amount of pain one night and I went to her bed to hold her hand and assist the nurses with administration of some medicine. I pulled the curtain that separates the two girls as I didn't want Claire to be frightened, but through the curtain, we all could hear Claire gently repeating to our roommate...."I think you can, I know you can!". Claire can be obstinate at times but her heart is gold. We are extremely proud to be her parents. She came home this afternoon nauseous, tired and beat down. So I am going to sleep next to her and whisper in her ear all night long..."I think you can, I know you can".

October 19th

2006-10-19T17:35:00.000-07:00

Claire returned to Sutter Memorial on Friday, October 13th, to begin her 3rd round of chemo. She is doing well and there is a possibility she could return home for a few days very soon. We are entering a very important part of her treatment, with an upcoming surgery that will determine our options in regards to her treatment protocol. We will provide more details on her prognosis and upcoming treatment plan very soon. Thank you for your continued support, prayers, and interest in her progress.

2006-10-06T10:15:00.000-07:00

Friday, October 6, 2006
It has been an absolutely wonderful week. We turned a huge corner on Monday when Claire completed three 80z Chocolate Boost Energy drinks loaded with fat, protein, water and other important vitamins PLUS some Halloween OREOs. Her continued ability to eat/drink not only provides her with essential nutrition and Hercules strength, but almost guarantees her stay home throughout the week. Claire's first requested activity Tuesday morning was to go to Target, not the zoo, McDonalds or the park, but Target. And we have been back several times since - so Claire!!. She is extremely happy and cheerful and back to her normal routine, daily tricks and silly behavior, I found myself relaxed and having to remind myself how ill she really is. My guard started to drop yesterday as her energy level and independence was restored to a new high and I watched her sit on the kitchen floor eating OREOs with brother Ryan, Auntie Erin and Uncle Scott and have one full body laugh after another. By night time when I snuggled up to Claire as she slept, I was overwhelmed with such love and joy for her that the fear, anger and sadness of her cancer rose to a debilitating level and I fell hard. My birthday wish for her and us came true this week, she is truly experiencing and enjoying life like before, but with a limp in her left leg, less balance and overall coordination, and peripheral loss of her vision on her left side. All I could think of was what a miracle she has overcome to come back to us and how cruel cancer is that it will take her from us again. Her MRI on Tuesday was good. The heavy chemotherapy regiment so far has been successful in stopping the cancer from growing and allowed her brain to naturally heal from the signifiant trauma it faced two months ago. Her brain's recovery to date has been magical, but part of the evil tumor remains and it is difficult to assess if the area around the tumor is scar tissue, remaining brain swelling or additional tumor mass. Her neurological - oncology team are pleased with the results so far but the location and other factors of her tumor and situation are to her disadvantage. Claire will start her third and last round of chemotherapy next Tuesday prior to her second surgery, probably in mid November. Her future outcome and life prognosis will not be fully measurable until almost a month post surgery and depends largely on the surgeons abililty to remove all or a majority of the remaining tumor without any permanent or life consequences during the act. She is such a unique and special girl, as Chris comforted me last night he repeated over and over.....we can only hope and believe that she will be the rare exception to challenge and defeat her cancer and provide us even more beautiful family moments and days like yesterday.
We have adapted to our new way of life and stuggle as best we can but largely due to the support and love of others. A very dear friend of ours, Tim Reilly has lead and orchestrated a "I think I can" fund for Claire, for inquiries or information please feel free to reach him by email at Reillyt@Caltronics.net. We marvel at the continued encouragement and assistance we have received and sincerely thank you. Your positive energy and prayers are felt daily and keep us warm and strong.

2006-10-01T17:03:00.000-07:00

Sunday, October 1, 2006
Claire is Back!! Claire is back... her white blood cells are on the rise, her energy level and strength renewed, her smile and silly jokes returned and most speical of them all she is back home today. It was a tough low period but Claire held on tight, never let go and conquered the horrendous storm. Her body was damaged from the first round and took almost 4-5 days longer this time to recuperate from the chemotherapy drugs, even absent of any bacterial infection. There was 3 days at the very bottom of the hole that she never even got out of bed or was able to finish coloring a single picture - it's like she is hollow inside and incredibly scary to view. Her deep brown eyes are her voice during her fight and you can clearly see her fear, frustration and fatigue when the fever starts to consume her frail body. I held her so tight and sang all her favorite songs softly in her ear until the medicine relieved her pain. And then there was light on Thursday... a little smile surfaced, a desire to open a birthday gift presented, and talk of holding Reese-ee upside down to watch her squeal with excitement filled the day...her body was coming back to us. We had a wonderful family night too, Reese on the new Dora scooter, Ryan dueling with the new dinasours, and our precious Claire on the bean bag surrounded by the new Dora House and Dora accessories. I can not tell you what a difference all the new toys and activities make in the playrooms - all the children and families on the 6th floor express their gratitude. There was a true feeling of "good" in the world, at a place sometimes dark and haunted by sadness and evil. By Saturday we didn't need her blood report to tell us her counts were positive for the first time in 9 days, it was all over her beautiful face and in her willingness to walk downstairs to the cafeteria for treats. We started our Oregon Duck football party waving her new and offiicial green and yellow cheerleader pom poms, a gift from cousin Leslie in Eugene who works for the Big Green Fighting Team, but had too much energy to be confined to her room, so after the first quarter we were off to join the arts and craft class. Although, she is still climbing back up from the hole and is not expected to be able to plant the flag on the very top peak until Tuesday or Wednesday, she was allowed to come home. We hope she drinks and eats enough to remain with us throughout the week, but learned last time there is no such thing as "worry-free" anymore. We are a little embarrased to ask, as the continued outcry of support and love has been overwhelming, but we need all the strong thoughts and prayers you can send on Tuesday, October 3rd, as Claire is scheduled for her next and very important MRI. We will be breathing slowly but with incredible HOPE until the results are received and determine Claire's next treatment plan and projected outcome. We believe in Claire and her perseverance to live and our family is complete only with her in it.

2006-09-23T17:19:00.000-07:00

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.

2006-09-21T14:18:00.000-07:00

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!

2006-09-15T14:42:00.000-07:00

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":

Sun. 09.10.06, Claire stands unaided and unsupported for the first time for a couple of seconds - "No Hands".
Mon. 09.11.06, Claire takes first 2 steps forward by herself into Auntie Danielle's arms.
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.
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.
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!.

2006-09-10T18:28:00.000-07:00

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.

2006-09-07T15:25:00.000-07:00

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!!!!

2006-09-06T09:14:00.000-07:00

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.

2006-09-03T13:52:00.000-07:00

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

2006-09-01T20:25:00.000-07:00

"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.

August 30th

2006-08-30T19:10:00.000-07:00

Claire still remains at Sutter. She contintinues to show many of the side effects of chemo. Her morning blood count did show signs of recovery but the opportunity to return home is not known. She is scheduled for her first post-chemo MRI tommorrow and we look forward to good news regarding the stabilization of the tumor (no growth).

Looking forward to providing positive news soon.

Thank you all.

August 28th

2006-08-28T19:11:00.000-07:00

Claire remains in the care of her doctors at Sutter Memorial Hospital. Her white blood count continued a decline and this morning some of her red blood numbers followed. This afternoon she received a transfussion of red blood products and continues to be monitored for infection. Her initial blood culture taken on Saturday showed no sign of bacterial growth but samples will continue to be taken untill she can maintain a normal temperature for 24 hours, with no assistance from tylenol, and no bacteria identified in her blood. Some good news came late today from Shannon, who reported that Claire had not had a fever for 8 hours. Our hope will be that her blood counts rebound and a normal temperature can be sustained for a period of 3-5 days. This could allow Claire to return home for the Holiday weekend. She had already been scheduled for a return admitance to the hospital on September 5th for her 2nd round of Chemo.

Please keep her in your thought's and prayer's. I can not find the word's to express our gratitude to those who have reached out. Just know we appreciate all of the support and look forward to providing positive updates in the day's ahead.

2006-08-27T13:57:00.000-07:00

Sunday, August 27th
Unfortunately, there isn't a lot to add to Claire's current health status or hospital re-admission today from Chris' posting last night. We are experiencing, for the first time, the very scary and ugly downside fall into the real 'black hole' of chemotherapy. It hits patients approximately 7-10 days post treatment start date. The fatigue, nausea and lack of appetite associated during the inital receipt of chemotherapy is always thought to be the worst part, probably because people can assimulate to this stage and it's visual, but I think the fall afterwards is just, if not more, devastating. Children, as we all know, do everything faster and much more dramatic than adults ....which can be wonderful when watching or measuring Claire's neurological advancements, but can be absolutely overwhelming when seeing her precious body stripped of all the necessary and vital "good" cells she requires to fight off any viral or bacterial infection. The drop of all "good" cells can happen quick and hard in children, easily hitting rock bottom within a 24 hour period - like Claire did, (for you medical professionals she went from 1900 to only 20 white blood cells over night) and sadly the ability to grow new and "good" cells and help fight off any infection in her body does not occur as rapidily. The next few days and test results will give us a better idea of the type of infection she has currently (which is likely as she incrementally spiked some bad fevers last night) and how her body will hopefully start to recover and climb back up to normalcy. When she is not on fire though, she smiles big while constantly requesting food items to be added to "her grocery store list" and when raving about how much she loves her Ryan and Reese-ee. And although, I spent a lot of yesterday on the floor in the hospital ward hallway frightened and requiring several boxes of tissues, PLEASE don't get down or lose any of your positive thoughts or momentum - its needed and continues to assist us during this difficult journey. As Claire's physician stated this morning Claire has already broken or exceeded all records or predictable outcomes to date, her re-admission now and quite possibly post chemotherapy in the future is actually expected and normal, and it's OK when Claire reacts like everyother child with cancer (as most of the pediatric hospital ward is housed by sweet and young children post chemotherapy then during their treatment cycle), an awful fact we learned first hand yesterday.

August 26th

2006-08-26T20:37:00.000-07:00

Hello All,

Claire suffered a minor set back this afternoon. She began running a temperature reading at home of 101 degrees which at this point in her chemo cycle is a sign to call the hospital. She is back at Sutter Memorial due to a low white blood cell count (very normal for pediatric chemo patients). She is being treatd with IV fluids, antbiotic, and an injection to assist in the rebound of white blood cells. At this point she did not need any red blood product transfussion. More information on Claire's condition will come soon.

Thanks again for all the kind words, prayer, and positive thoughts.

2006-08-24T18:23:00.000-07:00

Thursday, August 24th

Our Claire Came Home Today!!!!!!

Boy, when they say there will be great days and others that are less desirable and to only LIVE day-to-day, we now understand. Her week of chemotheraphy and lack of nausea was so incredible and then to be topped off with an unheard eating jamboree on Saturday was pure delight. We were on top of the world. Well, for the first time late Sunday, her chemotheraphy treatment and its effects surfaced. Claire lost all of her appetite, her irritability and aggitation was hightened and she complained regularly of aches in her legs and arms. She would yearn to be rubbed and then cry stating it hurt when touched. To enhance her bad mood she was very constipated and uncomfortable. She was just plain grumpy about everything and everyone, although again to everyones amazement still absolutely no nausea to date. It's difficult to see and hear her distress and voice her strong feelings of unhappiness, i.e. "LEAVE ME ALONE". And as a parent, my initial response is to make her apologize and correct her inappropriate behavior, but its the nurses and especially the physicians, that have rejoiced when attacked by her fighting spirit and unkind words. So, I am slowly learning to actually smile too as she verbally and sometimes physically objects to her medical treatment or regular checks. By early Tuesday morning, we entered into discussions of inserting a feeding tube with additional hospital stays throughout the next week. We all lost a little steam. Yet, surprisingly by Tuesday evening - and half a peanut butter and jelly sandwhich later - things were looking brighter. Her mood also considerably improved after the relief of about a 6-7 day period of no bowel activity. Wednesday morning our precious food critic and eating machine started coming back. McDonalds chicken nuggets, fries with ketchup, milkshakes, cheerios, cheeseburger, carrots, cheeze-its, and or course "chocolate medicine". Papa Jack long ago re-named Hershey Chocolate Bars as "chocolate medicine", it's always been one of those sacred papa and grandchild special codes. It has new meaning now. Her therapy continues up a very steep and rocky hill but Claire has decided she is going into the rock climbing profession. She can now sit up on the edge of the bed, legs dangling over and with very little to no support and can control her head and upper body successfully. She has started balancing herself automatically as well. Just like infants learn to place their arms out or counter move their upper body in the opposite direction when leaning to one side, Claire doesn't fall over anymore. Hooray! She is twisting her sides reaching for objects and exhibiting lots of other signs of neurological progress and promise daily. In the first couple of hours home, she even started to crawl a little and now easily rolls over, straightens her back with her arms extended and readjusts herself independently, if slipping down in a sitting position on the couch or chair. She even took a few steps walking with assistance and aid. It's heartwrenching but incredibly inspiring that from the moment she entered back home she has acted like and requested to do and go just like before ... it's almost like she doesn't realize she can't just get up and walk down the hall, or play with her toys in the same manner. It's obvious though that her non-disabled type of thinking and belief will only expedite her recovery faster.

It was Tuesday evening, after I had left for home - as Chris and I trade off part of every day and each full night at the hospital - that Chris called informing me of Claire's bowel movement and P.B. & J eating achievement, that I started to realize the different traits and strengths we both possess. After 12 years of marriage and trying to compete with our variations in personalities, characters and child raising techniques, I began to understand and appreciate how important our different styles and attributes are and their affect on Claire's recovery. And then when I expanded this thought to our immediate and extended family, it was overwhelming. EVERYONE contributes something vital and necessary to Claire's current healthy state or to our families ability to just continue to survive. Reese could not be happier and lights up the entire hospital ward during her visits and although privately scared and unsure and missing Claire considerably, Ryan seems as secure and loved as we could hope for during this last stressful month.

Again, today was joyful beyond belief and life confirming that although small and precious, Claire's will to live is larger and bigger than we can imagine. As much as we and Claire want everyone to run right over to share in our celebration, from now til really next Tuesday her "good" blood cells that fight off infections will be at its lowest and she is very susceptible. Give us some time to adjust to Claire's new home life and for her blood count to raise back up and then we will open our doors wide and with pure elation to all that want to see her smiling face. Thank you again for all your support and for contributing to her ability to return home today.

Wednesday, August 23rd

2006-08-23T21:14:00.000-07:00

Hello to all,

Claire continues to make progress upon completion of her first cycle of chemo. She is still at Sutter Memorial Hospital but we anticipate the opportunity for her to return home between treatments. Shannon will be providing more details soon. Thanks for the love, support, prayers and interest.

2006-08-20T21:23:00.000-07:00

Sunday, August 20, 2006.
Today Claire received her last dose of chemotherapy, of her first full cycle, and she is accepting it unbelievably well to date. She was cleared and graduated to a soft / moist food diet yesterday (previously on only pureed food) due to her current loss of neurological control to ensure all intaking food or drink goes down her esophagus not her bronchus (leads to the lungs), the two tubes are right next to each other. Claire proceeded to special order and eat 5 grilled cheese sandwhiches, 2 chocolate milkshakes, chocolate pudding, and a soft chocolate chip cookie. Anyone that came into the room, including housekeeping, she would stop and hold up her hand with five fingers pointing straight up and share her cheese sandwhich eating record. Of course her appetite will vary during treatment and yesterday was widely unusual, but the nurses loved it when she would request "another cheese sandwhich please" before even finishing the last. Oh, and in pure Claire style, by the last sandwhich refused to let anyone feed her as she had to "hold it and eat it by myself mom". The pictures above were taken yesterday and you can see the pure joy and sunshine Reese brings to Claire during her visits. We have now added daily "Reese Therapy" to Claire's treatment plan and believe it equals all medical therapy available. Even one of our other angels, Dr. Yim, a pediatric oncologist, gave Claire a look of utter disbelief and pleasant surprise of her current heathly state during his morning rounds today. Claire is on a state of the art anti-nausea medical regimen, not available at UCDavis, Oakland Children's Hospital or Kaiser currently. We learned / confirmed she is receiving medical care from some of the leading pediatric oncologists, neurosurgeons and aligned oncology healthcare professionals known nationally. She is definitely in the right place for the best chance to fight and survive her cancer. Her occupational/physical therapy was lightened during the last few days as her reaction to all the chemotherapy agents was so unknown and frightening. I am beyond thrilled to say that I am running out of adjectives to adequately describe her "unbelievable" and "astounding" neurological advancements. Here is a small example, on Thursday, Aug. 17th, just four days ago, during her therapy session, it took two of us to slowly and carefully move Claire's legs and arms into a doggy style / infant crawl position on a soft mat and she was unable to even try to push her self up with her arms, let alone, raise her head. Today, I asked her to roll over on her side by herself while laying flat on her bed to help me if she wanted her pillows adjusted - I am the mean therapy mom always making her work. She voluntarily continued, after her successful side roll, to place herself on her stomach, bend and raise both knees underneath her and then proceeded to stretch her arms out in front of her and raise her entire body up unaided (again similar to an infant crawl position), to top off her remarkable act, she then independently lifted her head up and looked around. If anyone has ever had their newborn acheive this monumental step, you can recall your full body elation and celebration.....that doesn't come close to the absolute rush and pride that overcame me. It was equally exciting to see Claire's smile as she too was just as proud. I could not stop leaping for joy and praising her, so she performed her new accomplishment two more times for me. I floated around her hospital room for the rest of the day and am still walking a little lighter even now. Her speech continues to improve and expand beyond our wildest dreams at this point. I even had to firmly remind her of good manners during a received phone call today. She did not lose the mysterious instinct, like all children, to want something or demand your full attention ONLY when you are on the phone - I immediately stopped and practically started to cry during the call as it was like any other day at home with her. Overall it was a really good day for her and large relief for us that her chemotherapy treatment was so kind to her this time. I did notice today that her largest achievements and overall significant changes have all occurred on Sundays....it can't be just a coincidence. Thank you very much.

Welcome to Claire's Web Site

2006-08-13T23:22:00.000-07:00

Saturday, August 19, 2006
Today is exactly 21 days from when we shockingly and tragically entered into our worst and unimaginable nightmare - the diagnosis of a malignant brain tumor in our vibrant, beautiful, athletic, independent and definitely one-of-a-kind loving Claire. I feel I need to recall some of the past developments and moments from the last three weeks to describe and praise Claire's already miraculous recovery to date. And going forward I will try my best to share her progress and hopefully continued success.
But before I do, I want to sincerely thank everyone for their heart felt cards, presents, meals, prayers and good thoughts as it has played a significant part in Claire's and our entire family's ability to fight. Your love and well wishes are with us daily. Thank you - Chris and Shannon.

Saturday, July 29th. We spent our last scheduled full day, of our one week, family vacation at the beach in North Tahoe. Claire swam like a dolphin, built three story sand castles, ate her favorite lunch - corn dog and fries, and out ran all the older boys at the local playground. She persuaded her dad into swapping sleeping arrangements, so she could sleep with me and dad would sleep in the bunkbed with brother Ryan that night. I can still hear her sweet voice as she jumped up and snugged into the king size master bed asking if baby Reese (Claire calls her Reese-ee) could sleep in the middle between us, patting the spot she already allocated for Reese. Thank goodness I was taken by her adorable smile and agreed until they were both sound asleep. It's amazing how life altering events can be recalled with such explicit detail and seemingly in slow motion, but at 10:22 pm Claire awoke screaming uncontrollably. She proceeded to get sick and then became completely unresponsive. We later learned how unlikely her symptoms were that night and that in their absence she would not have survived the evening and just never awoke. At exactly 11:58 pm, a brokenhearted female emergency room physician at Incline Village Community Hospital informed me of the discovered mass from a CT scan. Claire was immediately life flighted to Reno, Nevada to a larger hospital only 12 airflight miles away and received a medication that stopped the hemorrhaged tumor in her brain.
Sunday, July 30th. We will never be able to write, speak or think about this date ever again without feeling incredible agony. Sutter Health is a large, non-profit hospital and physician integrated system with locations throughout Northern California. As most of you know, I have worked for the last 8 years for the independent physician association (IPA) affiliated with Sutter Health, called Sutter Indpendent Physicians. I selfishly needed Claire in a specialized and reputable children's hospital with respected surgeons and physicians that I have knowledge and confidence of their medical capabilities, plus being close to home would prove to be invaluable while confronting this situation, so, we life flighted Claire from Reno to Sutter Memorial Hospital in Sacramento. One of our newest angels, Dr. Ciricillo, a pediatric neurosurgeon, removed a significant portion of the golf sized tumor on Claire's right size of her brain over a 5-6 hour surgery. The malignant tumor was confirmed to be a Primitive Neurectodermal Tumor (PNET), approximately 6 cm by 6 cm, located basically in the middle of her frontal and temporal lobes. Complete removal of the tumor was not an option due to the significant vascularity of the tumor and location. Her prognosis after surgery was very poor and between the remaining tumor, bleeding and swelling of the brain, 24-78 hours after surgery would determine if she would even be allowed the opportunity to fight this disease in the future. With NO exaggeration, there wasn't a single second during this excruciating period that a family member or loved one wasn't talking, singing, reading or sharing a story in sweet Claire's ear. Her favorite soundtrack, The Sound of Music, played repeatedly in the background. I believe in my heart and soul she heard it all and she is here today because we never gave her a chance to leave us.
Thursday, August 3rd. Claire's swelling and vitals stabilized and it was the first time (of many throughout the last few weeks and hopefully lots more to come) that Claire proved that all statistical probabilities and medical science can not fully predict a person's strength and will to survive. I will never, EVER, again complain or think negatively of Claire's tenacity, determination, independence and strong character. She is a fighter!!!
Friday, August 4th. This was a big day as it provided us the first glimmer of her basic neurological state. Claire shocked everyone as she opened her left eye and cried out for "daddy" within 3 hours after her ventilator was removed. It was the best present we will ever receive.
Sunday, August 6th. There were more signs and indications each day that our Claire was still present with every soft and simple word spoken. Unfortunately, a life saving device in her brain that drained the excess cerebral fluid was leaking and the risk of infection was too great, resulting in the removal of the drain completely. She was unable to expell the fluid individually and slowly crept back into a sleep state over the next day or so.
Tuesday, August 8th. Claire underwent an additional surgery to place a permanent shunt in her head that will assist in the draining of her excess cerebral fluid, as well as, a broviac was inserted in her chest. The shunt will be with Claire for her life and works similarly to a cardiac defibrillator - if her fluid level ever exceeds the established normal level it will drain the fluid into her abdominal cavity to be absorded. And after just a week, we think the shunt is a medical gift from above and works wonderfully. The broviac will be present throughout the entire chomotherapy period and will allow all IV medications and blood draws to be administered through this one tube without continually injecting or sticking her precious body. It happily replaced the millions of IVs, tubes, etc., covering her arms and legs over the last week. So we like it too.
Wednesday, August 9th. Claire hadn't woke up from her prevoious surgery before having to under go anesthesia again for a complete MRI of the head and spine with some additional tests. Claire proved them wrong again as no other tumors were discovered in her brain or spine and her cerebral fluid was malignant cell free.
Sunday, August 13th. This day will be remembered as the real day Claire woke up and shined. Her neurological development astounded all medical professionals associated with her care. Claire's swelling from the excess fluid and second surgery had decreased considerably with both eyes opening and showing her ability to track people and objects throughout the room. It was her verbal and cognitive advancements that day that were the most miraculous. Within a 6-8 hour period, Claire sucessfully went from answering simple yes or no questions, to multiple choice questions (i.e. showing her an object and giving her two choices of its color, size or orgin), to without any provocation or assistance, listing her special preschool classmates names and even spelling her own name incorrectly just like before - C.L.I.R.E. (ever understood why the "A" was always missing but I loved that it still was). And during a quiet, peacefull moment after rejoicing in Claire's verbal developments throughout the day, out of the blue Claire softly broke out into Julie Andrew's DO-RA-ME melody. It will forever be the sweetest song I've ever heard. Another amazing moment of this day, was when baby Reese was brought in and Claire responded with an ear to ear smile and reached out and held Resee's hand.
Tuesday, August 14th. Her neurological successes continue slowly but promising, it will be a lot of ups and downs with her full capabilities still really unknown as the brain is a magical mystery, especially in children, when recovering from such a significant insult, trauma and stroke. Her rehabiliation is and will be difficult and is expected to last at least throughout the next 9-12 months. Tuesday also marked the first day of her approximate 4-6 day chemotheraphy treatment, designed by another angel, Dr. Wu. She already feels like part of our family and we adore her. Claire will receive an aggressive treatment plan for 2-3 cycles, each cycle 3 weeks apart. Our goal is to stop the remaining tumor from growing and stop the blood supply it is currently receiving, so Dr. Circillo can perform an additional surgery and sucessfully remove all the tumor. The current plan, post surgery, is to undergo 6 weeks of radiation therapy and another year of chemotherapy, again in 3 week cycles. As much as her neurological rehabilitation is visually forthcoming and we all feel she has the drive to reach her full potential, it is ultimately the evil and deadly malignant cancer cells in her brain that will prove to be her biggest fight.