4-23-16

Friday started off early for us, as we had to report to admissions at St Mary's at 6:30AM! But we got here on time, went up to our room, and waited for surgery to get Drew in to replace his central line. He finally was taken back about 10:30, and by noon we were back in our room, both pretty wiped out! But after naps for both of us, had a nice end to the day, ready to start Round 5 of chemo this morning. So far it's going well. Drew has so much energy right now, tearing up the hallways with whatever he can push and charming the nurses and PCAs. People have been asking how many cycles we have to do, and what the next step is. Well roughly (because we know all too well by now that complications come up and cause delays), after this cycle we will have a another CT scan so the surgery team can decide whether they feel comfortable doing the big surgery to remove what is left of the tumor then. There will be a 6th cycle of Chemo we are told, either after the surgery, or before if its decided that the tumor needs to be shrunk even more before it can be safely removed. IF they can do surgery after this round, we would be looking at a date in mid-May. There is a 3-4 week recover from the surgery before we would do the 6th round, the last 3 week cycle. So if you've lost track, that'd be about the end of June/early July that we'd be done with the chemo/surgery part of his treatment, possibly. Then we'll move on to the bone marrow transplant...another huge hurdle.

I met a couple in February who's 13 year old son had been life flighted to St Mary's from Iowa with sever seizure activity. He had been put in a medically induced coma soon after they arrived, while doctors searched for a way to stop the seizures. This mom and I became friends, I would contact her as we came in and out and we'd get together for a walk or lunch since she was always there with him. They gave the kids gifts, she offered me encouragement when I had a bad week. It broke my heart to learn that they had to say goodbye to their son yesterday. This news has really hit me hard. As long as our journey is going to take, I'm sure this won't be the last sad day I have for another family. I'm also sure it won't get any easier to process this kind of news. I wish every child and their family would have a happy ending to their story, but the truth is, not all will. God is the only one who knows the answers to the "whys", and we can only cling to the promise that it will all work out for our good, somehow. So tonight as I cry for another mother, father, sister and family, I ask for you all to join me in pray for them. Lift them up tonight and this week as they go through what no one wants to imagine.