I think there are things your mind doesn't think about that your body knows. Or maybe it's that your mind thinks them but puts it in a part of your brain that doesn't let you know it's there. I think your body doesn't hide things so well. I tend to think about my having had cancer as an annoyance. Something that apparently happened a long time ago and can't we please just forget about it and do things that are important.
The thing that was important to me today was putting glitter makeup and sparkle hairspray in Matilda's hair and getting Fred in his "Jedi Fred" costume and having all the Wickliffe kids and their parents over for chili and mummy dogs before hitting the streets for gobs and gobs of candy. (Click below to read more.)
Since we have been home things have gotten better and they have gotten worse. For one thing, we are in our home, the place we belong, and there is no better comfort than that.
And I have no words to say how much better Fred (and Matilda and as a result Fred and Fred because of her and really probably them because of us, and us because of them) is because we are here. It’s a big deal. Today Matilda came home with her school pictures and I think tomorrow morning I will get Fred’s back. What’s so wonderful is that going to school is the highlight of their day and a reward for every hard thing they do.
And, we are glad to be back home in our church--Mark singing in the choir and the kids and I in the pew trying to sing hard enough for him to hear us.
It's Halloween in a couple of days. Fred’s going to be a Jedi, Matilda’s going to be a werewolf and all the families on our block are coming to our house for a dinner to pre-feed the Halloween candy craze. It's one of my favorite Wickliffe Road traditions. (click below to read more)
There are so many things to talk about that have happened in the last few weeks that I don't even know where to begin. So I'll start with today: Fred started first grade!
First of all there are a whole lot of people to thank for making this possible. The entire medical teams at SCCA in Seattle and Nationwide Children's Hospital here in Columbus have truly bent over backwards to make this a smooth transition back to home, and the team at Wickliffe Elementary (his teacher, principal, IEP specialist, PT, OT, and school councellor) have done everything in their power to make accommodations to help Fred start public school. It has been truly amazing! (click below to read more.)
Just before my last post we began making plans to be back in Columbus about mid-September. The idea (and we all agreed to it) was that if Fred was stable for a good amount of time (2-3 months) then coming home would be a perfectly reasonable thing to do. So we wrote to Fred's hematologist in Columbus and let her know our plan. And then not long after I wrote that post Fred started having problems again. He was needing blood more often and began making antibodies that made it so the best we can do now is give him blood that is "least incompatible" with his own. As would be expected any gains he was making in physical therapy when his hematocrit was normal, seemed to get lost due to fatigue when his hematocrit dropped below 30. Then Monday, which happened to be Mark's and my 24th anniversary, the call came from the clinic that Fred's hematocrit had dropped to 15 and we needed to get him over to the hospital for two units of blood. It was like we started to make one step up but landed two steps back. (click below to read more.)
Today was the kind of day where you get to the end of it and all you are is tired of hearing your own voice; and even after all the stuff you did (what in the world did I do, really?) you look around and see there is a lot of laundry and no clean dishes. Well, so anyway, I'd gotten Fred medicined and bathed and bedded and I'm talking to Matilda, now in her bath, about the choice she'd made to put lipstick kisses (lipstick? really?!) on her dresser drawer, and I launch in to my thing about good choices and poor choices and how she can decide if something she wants to do is something she should do and, she interrupts me somewhere in the middle and says, "Mom. I have a serious question for you."
We have asked a tremendous amount of growing up from her in this year+ of transplant, and even more in the last several months. I forgot all about the day and the laundry and the dishes and the lipstick.
She put her head to the side a little and asked me, "Was it easy or hard for you to grow your hair out?" (click below to read more)
One year ago today we came to Seattle to start the process of Fred’s transplant. We came with a full tank of energy, sent off by a strong and loving community of friends and family in Upper Arlington and around the world wishing, praying, and hoping for a healthy good outcome. So much has happened since then, and yet, we still are very much in the middle of this (or maybe still just at the beginning, I’m not sure). What I do know is that in the last few weeks Fred’s Hematocrit has been stable, and he has not needed a blood transfusion since he was discharged from the hospital shortly before Easter. His prednisone dose has been decreased a small amount, and he gets lab tests now only once a week. These are giant steps in the right direction. Still, Fred is trying very hard to understand what is happening to him and around him. He is struggling to figure out when he should be an adult and when it’s okay to be a kid. I don’t have the answers to that or what the future holds, but I can say a few things about the past couple of weeks that are true. (click below to read more.)
Fred has been through quite a lot in the last few weeks and it's been hard for me to unwind it all enough to be able to post. Fred has been in an out of the hospital since early February beginning with a cold that triggered graft versus host disease (GVHD) that worsened his autoimmune hemolytic anemia (AHA). To fix this, his immunosuppressents were changed around, and since then we’ve been in a holding pattern, waiting to see if it would work and giving him blood when his counts are low, which has been about once a week. In the meantime, Fred is seeing the nasty side of prednisone, including osteopenia (loss of bone density), which is the reason for the stress fracture. All this was complicated about two weeks ago when his routine cultures came back positive for strep and staph bacteria in the bloodstream.
Tonight in the bath Fred said, "Some days are big days and some days are small days. Today was an A380 day." He was not exaggerating. It was a very, very big day.
Before the bath, he had just come from x-ray and before that a 2-hour long MRI of his hips, knees, and ankles. At 9 this morning he’d taken his medications, but otherwise could not eat or drink anything in preparation for the sedation, which, when we got to MRI, he refused. After 20 minutes of all-out genuine sobbing he was finally able to say that he doesn’t want anesthesia because he doesn’t want to sleep through “the tunnel” which is, to him, astronaut training. He calmed down almost immediately when the anesthesiologist said he didn’t have to have it if he didn’t want it, and Fred held mostly still for the whole thing without even so much as a glass of warm milk. (click below to read more.)
Fred was admitted to the hospital today for falling blood counts and will get some blood tonight. He stopped one of the immunosuppressents and will begin a different one that will hopefully work better. The other hope is that once the new medicine (CellCept) is one board, he will be able to taper prednisone which we think is causing him to have problems walking. These things don't tend to slow Fred down and he is especially excited because The Make-A-Wish Foundation invited Fred to participate in a live chat with Kevin Ford, Chris Hadfield, and Tom Marshburn, astronauts on board the International Space Station!! (click below to see more)