Monday, March 3, 2008

An Unpayable Debt

Henry is doing much better. While he's still swollen and having pain, he's become more energetic and active which is heartening to Tara and me. Yesterday, he actually sat up for a while to play with a new truck. He giggled and for 20 minutes, I think he forgot where he was. A short time later he was hiding from the nurse, a very good sign that the old Henry was soon to return.

The mucositis, which is subsiding, has taken a backseat to his body rashes. He has some pretty severe itching and I can only describe the looks of them as hot and very uncomfortable. Some areas remind me of a severe sunburn where his skin has begun to peel, some of it bleeding. Fortunately the morphine keeps this pain somewhat at bay as well as constant lotion on problem areas.

He was awake until 12:30am this morning, but then quickly fell asleep after a long awaited bowel movement and after the nurse took down his blood transfusion. He slept well after that, cranky during his 4am vital signs routine, but still down now as I'm writing.

Sometimes I try to imagine this experience without some of the support we've had from family and friends. Emotionally we'd be strung out and tired, alone and stressed beyond belief. We'd be constantly worried about the girls, and I'm certain we'd not be getting near the rest we need to run this race.

I would have never thought it, but the help of strangers has been of a tremendous support as well. The Believe in Tomorrow Children's Foundation, with nothing but word of Henry's illness, immediately put us up for many nights within minutes of the hospital. Accommodations have been convenient, friendly and complete with meals and friendly and empathetic staff and volunteers. They provided us with our recent retreat to Ocean City as well as our current lodging.

Except for the time taken for our care of Henry, Tara and I just spent a nice weekend with the girls and my mother, all together in a fully furnished apartment within a five minute drive of the hospital. These accommodations, collectively called the St. Casimir House, are reserved for patients needing to stay close to the hospital during long treatments, of which, believe it or not, Henry's is on the short end. We'll keep this apartment to use at our convenience for the remaining duration of Henry's high dose chemotherapy and stem cell transplants, another six weeks. It's near the harbor, safely located in Canton and is near amenities like groceries and pleasant areas for walks. The also provide us parking across the street from the hospital entrance which saves much time and cost. Henry will join us when released between and immediately after treatments. It's a wonderful home away from home.

So while I know no one expects returns, we'll forever be in debt for the love, support, and boundless help we've received. We've tried to graciously accept it, use it to keep our family afloat, and with humbled hearts to learn greater compassion and caring for the community around us which is ever so much larger than we could have imagined.


Anonymous said...

Bryan, so glad to hear that Henry is starting to feel a "tad" better, and actually doing some playing and hiding. All good signs.
So sorry about the rash over his body, itching and burning are tough things to deal with, glad the morphine is providing some help.
So glad all your family could be together this weekend at St Casimir's House, what a life saver.
Keep on Cruckin'


Anonymous said...

Hang on to the love and support we all send you. It is the least we can do for terrific famly like you all.
Thanks for keeping us in the loop and seems like the "corner" is a little closer!

Love always,
Cousin Susan H.