May 28th UPDATE

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.

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.

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

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

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.