Adjusting to Home

It's been a while since I posted anything. We've been home for three weeks now. I wouldn't say life is "back to normal" - rather, as one friend aptly put it, it's a "new normal" - but, certainly in every way, we feel huge relief to be out of the hospital, out of treatment, and all together under one roof.

Matthew has been feeling relatively well except for occasional aches & pains and mild stomach distress. He's got his appetite back, is eating well and trying to regain some of the weight and strength he's lost. He's also working hard on schoolwork to make up for lost time, meeting with tutors in math, English & history, and sneaking into school in the middle day for individual lessons and tests. (He's not allowed to attend classes for the remainder of the school year due to concerns about infection.)

Every Monday, we go back to Hopkins for a clinic check-up and bloodwork. The emotional terror (and accompanying mental and physical exhaustion) this induces is almost impossible to describe. Between last Monday's appointment and Tuesday noon when we finally got the phonecall saying the bloodwork was normal, Jon & I could barely breathe from anxiety.

Tonight (Monday evening), as I write this, I am so physically exhausted, I might have been chopping wood all day, but it's just the aftereffects of a day at Hopkins. Today's visit was particularly draining. We had three appointments - the first in Radiation Oncology, where we heard two entirely contradictory opinions about whether or not Matthew should receive additional "booster" radiation treatment for added protection (neither of which reflected the supposed consensus our docs have been giving us for the past three weeks), the second in Audiology, where we learned Matthew has incurred additional hearing loss, and the third in Pediatric Oncology Clinic, where we tried not to hold our breath as they drew the weekly blood draw. At the end of the day, we received the call with the only news that really matters - that the bloodwork looks normal - but the demands of the day had already left us mentally, emotionally, and physically completely spent.

Against the backdrop of these stresses, we are trying to enjoy the good times and get back to our normal routines. In the past weeks, Matthew has visited with friends, hosted a poker night, and participated in book club. Danny has resumed baseball & soccer. Jon's coaching again. I'm making an effort to get back into exercise & yoga. I've also gotten back into my kitchen with a vengeance. In an effort to entice Matthew to eat more, I've baked more in the past three weeks than I did in the past three years.

We're still living in limbo, but we're also starting to make a few plans. We've excited about going to Boston for Passover/spring break to see family members and also many of the new friends we made in the fall. Matthew's planning to take a summer school course in biology and Danny has camp lined up. We're still taking it one day at a time, but we're also trying to cautiously look ahead.

Matthew's incredible attitude still leads us forward. In conversation last week (in the Target parking lot), I asked him if he ever thinks back to the time before "all of this" started. He responded: "Don't go there Mom. It's not worth it. Besides, I still have everything that matters - my family, my friends, my home, my music. That's all that counts. The other stuff really doesn't matter. Now let's go do some clothes shopping...!"