100 days and more

I have let the summer come and almost go without writing about our adventures, but what better occasion to stay up a little late than to tell you that Samson had his central line, the Hickman catheter, removed from his chest today. Here's the last picture with it in, right before the procedure:

I hated that miserable thing with the tubes hanging out of his shirt and the awful dressing that we had to change every week. There may come a day where I can more positively marvel at the lifesaving drugs and procedures Samson has endured since April, but that day has not come yet.

I still revolt against all of it. Physically removing one of our little chains felt wonderful all around. Samson is expected to need occasional transfusions in the next year, but we can just place a normal IV for those.

So much has happened since early June that catching up is daunting. We had another short hospitalization in June, and a much longer at-home recovery from pneumonia, including two months of IV antibiotics that I administered three times a day through the Hickman. I measured and dispensed, and Samson took, hundreds of syringes of medicine, by the handful every morning and night. We also spent a lot of time just trying to figure out what was going on. There were many long nights where Samson screamed, apparently in pain, for hours, over benadryl, tylenol, oxycodone, everything in the toolbox. What hurt? Was he afraid? Was it his stomach, his bones, his skin? This has improved, but not gone away, and still we don't have a lot of answers.

Ever on the alert for germs, and following the rules of the transplant team, we managed the summer carefully avoiding going into stores or parties or crowds of any sort, and at the park or the pool we tried to dodge anyone who looked even a little bit sick or unvaccinated. We spared no medical facility though -- we went to physical therapy, speech therapy, and occupational therapy. We visited an infectious diseases specialist, a pulmonologist, and a developmental pediatrician. We traipsed into the oncology clinic at least once, often twice, a week all summer. We handed over a lot of blood, got a lot of stickers. I did not become a more patient or kinder person, but Samson has, slowly, gotten healthier, stronger, happier.

And, as you might have imagined, his sisters and brother have thrived on swimming lessons and art projects and popsicles and sunshine.

Samson and Aaron and I, in turn, have basked in their sunshine.

We had our 100 day bone marrow biopsy at the end of July, with pretty good results: 90% of the marrow is Harriet's; 10% is Samson's. I'd rather it was 100% Harriet's (as would the doctors, I think), but there was no sign of cancer and no sign of the monosomy 7 that was in Samson's diseased marrow cells. The "chimerism" -- which is the test that tells what percentage of blood cells are Harriet's versus Samson's -- can be done on the blood, as well as the marrow, and it was repeated earlier this week, but we have not gotten the results yet. It will continue to be repeated on the blood -- and if there is a problem, the marrow -- every month this year.

Amidst all the doing this summer, there was also the adjusting. After finally getting him home safe from transplant, I had time to absorb the reality of my darling challenging Samson. He was over a year old, but developmentally he was at about a four month level. He has been sick his whole life. For weeks after coming home, Samson was absolutely unable to sleep for even a minute without being held up against me, and he was constantly startling at the slightest noise of the other children. And the medical reality, confirmed by the pulmonologist: Samson was quite possibly saved from cancer, but he has permanently damaged lungs from the infections and viruses that assaulted him during his first year of life. He is at great risk of lung infection, and breathing will always be his challenge. For the rest of Samson's life, we can expect that he will need to inhale medications and have daily percussion therapy to help him clear his lungs. He is often compared to a child with cystic fibrosis, but his official diagnosis is bronchiectasis.

I have more to say, as always, but I will close now so I can wake up and tackle another day of soccer camp and albuterol nebulizers. I have been asked if I intend to keep up this blog and I do. I think I will have more time to write when the routines of fall are here and I believe that writing it helps me -- to know where we've been, where we are going.

And, at over 100 days, I would absolutely say we are going in the right direction.