More Bad News

Well, we take one step forward and then two steps back. Today we got the news that the pathology from his second surgery which looked at more of the tumor showed that the tumor is stage IV not stage III as thought earlier. A stage IV glioblastoma is called glioblastoma multiforme or GBM. Basically this means that the tumor is more aggressive and faster growing than thought. There is some subjectivity in reading pathology from slides and our radiation oncologist even said we could line up ten pathologist and six would say one thing and four would say another, but they compared this slide with the one from the first surgery and feel that the first diagnosis was correct, but that the new sample shows more signs of a stage IV. GBM is much more common in adults and is rare in kids, and again the location of this kind of tumor in the posterior fossa is rarer. You can look up pediatric GBM here: http://www.childrenshospital.org/az/Site962/mainpageS962P0.html for all the details.

Basically this changes his overall prognosis but not the treatment plans. He will still start radiation tomorrow and it will last for 6-7 weeks. Again there is no known chemo that works for GBM and Joe will start his experimental Tarceva tomorrow as well. He will be sedated for the radiation every day, but the actual radiation only takes a few minutes.

It seems like we can't even start to get a grasp of our situation before the situation changes. We continue to need your prayers and support. Please specifically pray that the radiation treatments will go smoothly and that Joe will not have bad side effects from it, that he will continue to progress in his physical therapy, that he and Holly would sleep at night, and that Gillian and I would communicate well. It helps us to know that there are so many out there praying for us and continuing to have hope.

Results from the biopsy

Dear friends and family

We met with our neuro-oncologist today and she told us that we are dealing with an aggressive tumor called anaplastic astrocytoma. It does not appear to originate from his brain stem but from his cerebellum and is now infiltrating his brainstem. The slides from the biopsy showed normal brain tissue wrapped up with the tumor tissue meaning that further surgical removal would be severely detrimental to Joe's ability to walk, talk, function, and could in fact kill him. This is an extraordinarily rare form of pediatric cancer and the location of his tumor is even more rare. You can read all about it at this site which was the first one that came up after googling "anaplastic astrocytoma".

Right now the only treatment is radiation therapy but that will not start for 2-3 weeks until he fully recovers from the surgery. There are some other chemo agents that we may decide to use if our team thinks they might be beneficial. We feel very confident in our doctor and she is doing everything she can for Joseph. However, the prognosis is not too good. You can read all about it yourselves and given this audience, I know most will immediately. But for now, we are going to focus on enjoying every day that God has given us with Joe, hoping and praying for the best, but preparing for anything.

We have many difficult decisions ahead. We ask that you continue to pray for Joe P. and for wisdom as we try to do what is best for him. Again, we are in awe of how many people are supporting us with prayer, food, babysitting, comments, etc. Even though this is an unbelievably horrible situation, we defintely feel God's presence and there is no way that we could go through this without him and without you all.

Thanks,
Allen, Gillian, Joseph, and Holly