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Posted by LauraTubo (68.76.186.251) on 21:19:07 11/10/04
We had a good day today. Joey woke up in a great mood and feeling fine. We visited the clinic today for labs and to catch up with our primary oncologist. Joey's ANC dropped to 1500, but there is no real concern on that. I had quite a few follow-up questions on where we have been and where we are headed. The dilemma is two-fold. First, there is some discussion on where we radiate--just the primary tumor bed (adrenal area) or the additional spot that remained in the frontal midline skull area. The head gives me concern. But, as with any other aspect of this process, we must weigh our risks. The risk of active tumor actually remaining in the area of his brain is far greater than the radiation risks of damage to that area. Most likely, once my oncologist and the radiologist review the previous scans again, we will be advised to radiate the skull in addition to the abdomen. I am told that the 12 visits of radiation should not produce monstrous side effects due to the low dose and minimal frequency. Joey has done so well with every other aspect of this protocol, I must trust that will remain true. The other struggle we are having is for future treatment. There are some clinical trials that deal with antibody therapy. This treatment would target the neuroblastoma cell using a special dye and then administer antibodies to that area. The idea is that these antibodies would teach Joey's body to fight the NB cell if it shows up again and starts to spread. The thing about this is that it is a trial. It is not proven and many side effects come with it as well. I have been praying that we go the right direction with this. This treatment is not offered locally. If we decide to do it, it would require more travel to a participating hospital. It all boils down to prayer---in the end, it always comes back to that. I pray that we make the right decisions for Joey. He is a miracle in our lives. He runs around the house and lives life each day to the fullest---like we all should.....Tonight at prayers, he said, "Mommy, I love you all the way to Heaven and the Stars!" He is such a little lover-one zinger and he has me!!! He and Gina just giggled tonight. It was so wonderful to see them getting along and cracking each other up. It makes the struggle completely worth it for me. They are my gifts---EVERY DAY. I love you all. We will be back in the clinic on Thursday and then, to radiation on Friday for a planning visit. When I know more, so will you. Til then...thanks for listening.
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