A Night For Prayers

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

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

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.