Lift Up Your Hearts!

I've been remiss in updating Grace's Journey; my only excuse is that no news is good news! She has been doing well. For a more complete update from Jon, see their new Daley Pondering blog post, from which I will quote extensively. Jon is writing.

It has been great to have less medical stuff going on these days, and we get more comments about her being "so cute" in the grocery stores and the soccer games, etc.

Her hair is growing in, and I don't think I've heard her referred to as a boy in a while (for a while she just looked like she had a really short haircut, but it is growing out more). She discovered the 18 month clothes bin in the attic the other day and has been wearing some onesies, since she mostly still fits into them. She'll turn three next month.

Life, however, is still far from normal.

We continue to do weekly dressing changes - we had a full day yesterday and so she fell asleep during the change - it is hard to imagine kids screaming through it, but we are certainly blessed to not have that problem. She happily puts on her mask and then holds her hands above her head until it is done.

She has been gaining weight, and we've started up the steroid tapering off again and doctor visits are every other week, once a month to Dartmouth and once a month to Boston, so that schedule is nicer too. It is possible that the steroid taper will be increased and be done soon, which then triggers the start of the cyclosporine (immunosuppressant) taper, which will be the end of the meds entirely!

Her nasogastric tube fell out while she was sleeping last week.... She woke up in the morning and brought the tube down already pushed out of her throat. So, we proceeded to the semi-unapproved installation of a new tube, and it went successfully.... We'll see what Boston says about that on Wednesday. Last time, Dartmouth recorded the procedure as "without contacting medical providers", and did an x-ray to confirm proper placement, but didn't explicitly forbid it in the future.... I think that because we know the exact length of the insertion, there is fairly little risk involved—a nurse at Children's told me that she will really start coughing if it is in her lungs rather than her stomach, and we verify the pH after insertion as well. (The supply house apparently thinks it is reasonable for us to do the procedure, because they send all the equipment to do so, though maybe they are thinking a visiting nurse—they are sometimes surprised to hear that we do dressing changes ourselves.)

Faith, big sister and bone marrow donor, has been doing well also. This donation recovery period, which was supposed to last no more than a couple of weeks, has been a long, slow process involving physical therapy and chiropractic care. (The transplant doctors pretty much washed their hands of the problem.) But she estimates that she is now "98% back," and has been able to enjoy playing on the high school girls' soccer team, which means a lot to her. Her coach and her teammates have been great, encouraging her to play when she can and rest when she needs to. They even celebrated Leukemia Awareness Month—the "color" of which is orange—by dedicating a game and a fundraiser to Grace, Faith, and their whole family.

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The high school principal said there was a "sea of orange" in the school that day, and there were a lot of people wearing orange at the game.

The team raised about $1600! The opposing team gave the family flowers, though they did not go so far as to refrain from winning the game.