We were scared.
We were overwhelmed.
This year has been full of craziness as we tried to balance the side effects Matt was having with the fact that the chemo seemed to be working. He had foot pain/neuropathy, high blood pressure, strange skin rashes/bruising, diarrhea, vomiting, and a full compliment of GI issues that were very odd.
In June, someone brilliant thought to test his stool, and it came back showing elevated fecal fat - a sign that his body was not absorbing fat properly - a sign his gallbladder might be malfunctioning. After a 2 month fight, we finally were able to get his gallbladder out.
Surprise!!! No more GI issues. It's a good example of what makes Matt so difficult to figure out. He has so many issues that could have caused the symptoms he was having. He is like a gigantic puzzle. With 1,000 pieces. All of sky. :)
Anyhow, we went to St.Jude a few weeks ago and they were absolutely astounded by how well he is doing. His GI issues are almost completely gone. He hasn't had the foot problems in several months. He has grown 4 cm. (1.5 inches). He has been attending school for full days, and feeling well when he comes home (well, except for almost all of October, but that's another story). He just got braces. All in all, he is doing wonderfully and we are mixing in a bit of 'normal' with all of his 'definitely not normal'.
Dr.Wetmore is so thrilled. She said the average time children are able to stay on a phase 1 study is just 2 months before either the side effects become too bad, or the cancer continues to grow. Matt has made it 12 rounds and we are all so unbelievably happy that this treatment seems to be working.
We got the go-ahead to continue this chemotherapy. The protocol allows for 12 more months, and we will continue to travel to St.Jude every 3 months to see if it's still working.
I am thrilled at how far we have come in a year.
