More Sad News

Joseph continued to decline today. His MRI today showed that not only was the tumor back, but it was four times as large as it was after the surgery last month. He also had significant hydrocephalus (swelling) from the tumor blocking the drainage of the spinal fluid from his brain; but the MRI also showed evidence of some herniation (which basically means that the pressure was so high, it forced the brain into areas where it shouldn't be). With all of this going on, they said that they do not expect him to live more than a few days. We figured that he was having some tumor regrowth and knew that these new symptoms were alarming, but we were not prepared to hear this news.

So, after talking with a quality of life doctor, we all decided that the best course of action for Joseph is to take him home, make him as comfortable as possible, and keep him pain free. There are some things that they could do to relieve the pressure, and we could start the new chemo, but they used the term "days" to describe how much time those measures would buy us. We definitely feel that he has suffered enough and to put him through more surgeries or even another IV stick would be cruel.

We are really grateful we got to meet with this new "quality of life" doctor. He is a neuro-oncologist who is starting up programs in hospitals to help families adjust to life with a very sick child. Speaking with him today was very informative and helpful and gave us a lot of peace about the immediate future. He was able to read his MRI scan and tell us exactly what was going on, but he was also very emotionally supportive and encouraging to us as parents. I had prayed this morning that God would send us someone to help us know how to help Joseph in these last days, and this man was a definite answer to that prayer.

We are spending the night here in Memphis with Jennifer and Matt and then we'll be leaving in the morning for Nashville where Joseph will get Hospice care at our house. He isn't in constant pain, but he can get pretty severe headaches, so we'll be giving him medicine whenever he needs it. He is very lethargic and has been sleeping most of the past two days.

Thank you everyone for the birthday wishes-- the only times that he was happy and smiling today was when he was opening presents and talking about opening presents. Please keep praying for us: that Joseph would be pain free, that we would have strength to get through this, that we would feel peace about everything, and that our final days together would be special.