The news after Matt's spinal MRI was not good. The tumor in the spine is back. It is creeping in at the top of the spine and through an area of the brain called the 'Circle of Willis' - basically a huge collection of arteries and veins. There is also tumor at the base of the spine. These are called 'drop-mets' and are little bits of tumor that have broken off, gone through the CFS (Cerebral Spinal Fluid) and landed at the base of the spine. None of this is good news, but I'm trying to remain positive and remind myself that we had all these things when he was initially diagnosed, as well.
Part of the wait was due to a radical shift in our 'plan'. We decided that since Primary Children's Hospital does not have a Neuro-Oncologist, that we needed to take Matthew somewhere a little bit more specialized. We discussed several options and ultimately felt the best about St. Jude children's research hospital. It is consistently ranked #1 in pediatric cancer care of all types and they treat a lot of children with brain tumors. Once we made that decision, and St. Jude agreed to take Matthew, it was like a burden lifted from me. We all feel very very good about our decision to have him treated there. However, we had to begin the waiting game. First, all of his records had to be sent to St. Jude. Then, his pathology slides had to be sent to St. Jude, then we had Thanksgiving....... Aaaaaargh! How can there be a holiday in the middle of our CRISIS?!? LOL! Then it was the weekend. Then St. Jude had to send for a bit more information from pathology. The wait has been agonizing, but today we finally got the go-ahead and the plan. Matthew and Audrey and I leave for Memphis bright and early Monday morning. We will be staying for a month. (Don't talk to me about the whole Christmas thing. I'm in denial about it. We'll take it day by day.) At St. Jude, the patients live 'on campus' but are not 'in-patient'. Matt will be closely monitored, to evaluate how well he is tolerating this medication (AZD-217). The pathologist at St. Jude agreed with the pathology of Pilomyxoid Astrocytoma and thought it had some Oligodendroglioma features.
So, today we'll get some laundry done, pack up our things, and get ready to go (oh, and go to Salt Lake to pick up Will's skis - I think Warren, Will, Nate, and Drew will keep sane by skiing. A lot.) Thankfully, we have a tremendously wonderful and supportive ward and neighborhood. Everyone has offered to help, and I really do think they will do just about anything if it means helping Matt. I'll be trying to arrange a preschool situation for Jake and then he'll probably have a play date with a buddy in the afternoons. Carolyn and my mom will also take him some of the time. The big boys are easy, since they are in school all day and Warren works from home. Being able to bring Audrey is a huge relief. I was really obsessing about what to do with her. She is sort of a mama's girl and is only 18 months old. When I learned that I could bring her, I felt that everything would be fine. I am so thankful Warren works from home and that he is such a confident and competent caretaker to our children.
Matt is still doing well. Neurologically, everyone who checks him out, is amazed. He has very few symptoms at all from his cancer. He had a port placed last week and that has made him a little bit sore and a little bit tired, but by the middle of this week he was wanting to go to school and was back to his normal self. He is just upset about having to miss so much school. :) That's my Matt!!! His school wanted to know what they could do for him and I thought that maybe some sort of project to benefit St. Jude hospital would be a good idea. Then, Matt could be involved and 'give back' in some way, as well. His teachers are wonderful and have taken the initiative to contact St. Jude and see what they need. They have undertaken a huge project of making fleece blankets, pillowcases, and hats for the patients. Then, Matt will be distributing them. I think it's wonderful!
I'll try to update when we get there, and keep everyone posted about how he is doing with treatment.
Thanks for your support and love, everyone!
P.S. We had some photos taken a few weeks ago with Cecily. She is AMAZING! In approximately 5 minutes, in the pouring rain, she got these photos of our family.