Our break is coming to an end though. Tomorrow we'll go to Rochester for his hearing test and a few appointments--one with the nutritionist and another to follow up from transplant. Please pray that the hearing test goes well, and that he doesn't have much (or any?) permanent damage from the transplants, and won't need hearing aids, which is a real possibility. It will be interesting to talk to the nutritionist also. While we expect him to be on the feeding tube for a little while longer, but it will be good to hear how the transition goes to get him back on a diet of table food again. Right now he is still interested, and puts food in his mouth sometimes, but doesn't usually swallow it. We have been working with him more to swallow, talking him through chewing, and then washing it down a drink of water (hard to listen to Josh have to teach him that all over again...).
Then Monday starts radiation. The final plan includes treatment to 5 places--upper right femur bone, two places on his hip bone in his lower back, the original tumor site, and to the back of the head. With the proton beam, the damage to healthy parts of his body should be minimized. We are really so fortunate to be so close to Mayo where they have this treatment available. So many have to travel for this part of their treatment! I'm told it should only take an hour or less, but with sedation the whole process will take 2-3 hours. Again, I'll be taking him over to Rochester every morning for the next 2 1/2 weeks for treatments. With the strength of the doses they are telling us to expect only mild skin reactions, like a sun burn. He may get nauseous and tired from treatment. But everyone keeps reminding us it should seem easy compared to all we've been through. I hope and pray they are right!
While it's obviously great to be home together, these few weeks at home have felt kind of long to me. In the fall all my usual "Mom activities"--play groups, classes, bible study--start up along with school. But this year I didn't sign up for anything since our schedule is still so up in the air. I'm a pretty social person, and early on in my stay-at-home-mom career I realized I was happiest when I was involved in the community. So this last week I purposely tired to fill my days more, to fight the loneliness that I am starting to feel. I will try to make sure I continue this in between treatment periods this season, since it really made this and last week go so much faster and better for all of us!
While I've been at home, I'm also getting reminded of all we've been through when I'm least expecting it. A long sleeved shirt I got out with the rest of his warmer clothes that Drew wore in the hospital during a particularly tough week, or a request for a bedtime song from him that he learned from the music therapist at the hospital, or a toy that I ran across in the toy bin now that was in his hospital bag of toys, all have generated a reaction in me I didn't anticipate. I'd be just going through my day, feeling settled in at home, and then one of these reminders stops me in my tracks and takes me back to darker days. I wonder how long this will go on. Years from now will I run across something like the quilt that I bring with us to the hospital to put at the end of his bed each stay, and be flooded with memories I wish I didn't have? I'm sure it's all part of the process. Some stage of grief, or processing what's happened to us in such a short time. We've only had a few "lulls" in the action to have the opportunity to breath and process. I'm trying to bring all these feelings to God. Pray about it and let Him comfort, and speak truth in my heart. He is with me, all things work out for the good of those who love Him, and we can do all things through Him. But you all could pray for my heart too. So much to deal with through all of this besides "just" cancer!
Included some pictures again of our adventures in that last couple weeks!
~Heidi Becker
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