Hello 2011

So much for having time to write once I settled into a fall routine! My days are full and busy, and my nights too short. In this role of mother to four and medical monitor to a very special child, I find myself running from one task to another, over and over, until I eat dinner around 9:30, then collapse into bed, hoping Samson will let us sleep until at least 3. We snooze after he eats, then wake to another day started with little voices coming from upstairs, where my big kids now all sleep in one king-sized bed together with fifty stuffed animals, lots of blankets and the occasional truck.

My writing is mostly limited to a lot of sticky note reminders on the desk, the kitchen cabinets, and the refrigerator: refill this prescription, make that eye appointment, ask Nemecek what's up with IGG levels. And lots of lists on sticky notes, including one right now that says, buy more sticky notes.

While there is not enough time in my life, there is a lot of joy there. Samson is home, sleeping in our bed, in the house with his siblings. He is eating and growing. His hair and eyelashes are growing too. And he often has the energy to focus on things beyond his illness -- he is learning to move, to work his hands and face, and to make sounds. I am learning how to help him. I know that we are still in the thoughts and prayers of our friends and I am incredibly grateful for that.

There is, of course, a measure of grief mixed in as well. We have lost things, and I have gained a lot of worries I'd rather not have. At risk of being greedy -- because I know it could have been far far worse -- I hope to look back on 2010 as the worst year of my life.

Anyway, back to the good stuff. Medically, Samson's progress this fall has continued to exceed expectations. The most recent chimerism showed that his blood cells were 100% donor cells -- no Samson, all Harriet -- which is what we want. And most of his other counts -- neutrophils, platelets, red blood cells -- are in the normal range for the first time in his life. Other than our normal appointments every few weeks, we had to spend only one long day at the hospital in October getting an infusion of IVIG (immune globulins that are supposed to help Samson fight off sickness). We are scheduled for another IVIG infusion next week, because Samson's immune globulin levels were low again at the last blood draw. Checking in and getting an IV placed takes a while, in addition to being painful, and then the infusion takes several hours, so it's usually a fairly miserable 9 to 5 appointment. Not our favorite way to spend the day. Here is Samson at his last IVIG appointment:

We also go see our pediatrician at least every four weeks, where Samson gets shots of a drug called Synagis to help him fight RSV, a virus that is a cold to you and I, but a miserable lung-destroyer for Samson. The drug is intended for tiny preemies. Samson is so big, relatively, that he has to get two shots of it -- at a cost of a few thousand dollars each. Thank god for health insurance. I look forward to the year I don't meet the deductible in the first week of January. Samson got a case of RSV in December 2009 despite the Synagis, but he weathered it relatively easily with only a few days in the hospital, so the drug probably helped.

Samson gets several other shots at each pediatrician visit, as well, because he is starting to get his immunizations; he has to repeat all of his shots since none of the pre-transplant immunity carries over. It's a drag to get the shots but I am thrilled he has been deemed well enough to receive this protection from disease; I am eager to get them done as quickly as we are allowed. We also go see the pulmonologist at Doernbecher every several weeks for a check-in and occasional x-rays, and we have met twice with the developmental pediatrician, who turned out to be nice but useless.

Drug-wise, we have cut back a lot. We just wrapped up the last of our acyclovir, an anti-viral drug, and bactrim, which was to prevent the type of pneumonia that AIDS patients get because of their suppressed immune systems. We got rid of a few others earlier in the fall, and some other as-needed ones just aren't needed anymore -- anti-anxiety, painkillers, and anti-itching. The inhaled medications are still the biggest pain, as we have to sit down and do those while Samson is sleeping because he won't hold still for the nebulizer anymore. That takes close to an hour each day.

Our only significant health blip since the summer started with a cold/croup thing the big kids started to come down with in early December that passed to Samson and just didn't clear up. When we saw the pulmonologist, Dr. Powers, in mid-December, he felt that Samson was developing an infection in his lungs, so he put him on an oral antibiotic that would cover the type of bacteria we have found in his lungs before. Unfortunately the oral medication made Samson sick -- he was non-stop vomiting and having diarrhea -- so we quickly switched to an injectible antibiotic, which meant he spent eight days before Christmas going to the doctor every day for two shots, alternating chubby thighs each day. We finally finished that but then had to go to Doernbecher on December 23rd for the oncology blood work. Samson starts to cry when they pull on their gloves, but this time I started crying first -- right when we walked in the door. Sometimes I think I am hardened to all of this pain I put him through, and then it turns out I'm not. Anyway, we got a pretty good toy piano for that one. I might cry every time.

We have continued to be a little isolated this fall, and will be for the winter, which is hard but worth it for Samson's long term respiratory health. Samson should have some room to improve his lung function if whatever additional lung tissue he grows in these early years of his life can remain healthy. You may recall that one pulmonary function test performed pre-transplant showed Samson's lung capacity then was about 50% of normal. While nothing will fix the damage already done, it is hoped that the addition of some healthy new lung tissue will reduce the impact of the hurt parts. Right now, the weakness of Samson's lungs is clear. He is trying to start moving around and verbalizing, but he quickly gets winded when he exerts himself.

So, for Samson's lungs, we skip some outings, and we appreciate our friends who cancel on us when their noses are runny! My general approach is to avoid what germs we can and try not to get stressed about what we can't. To that end, I let the big kids love all over Samson. But first they sanitize their hands. I let them go to school and pick up germs and bring them home, but I don't let other kids come over with runny noses. Sometimes our family goes out to eat together, or to a birthday party, or we have friends over. Because those things matter. But we don't go to the grocery store if it can be avoided, and we don't go to crowded indoor events, like school events or large parties, with Samson. I also get a call from Josephine's school whenever there is an outbreak of something infectious like chickenpox, so I can take special care to avoid taking Samson into the school, and keep Josephine out if necessary.

As flu season arrived, I became particularly fearful of that, and Samson's pulmonologist agreed that the flu would absolutely be life-threatening for him this year. Of course we all got our shots but they are only about 70% effective, they say. The twins go to preschool three days a week, and I hated to pull them out, but felt they were the most likely to pick it up and pass it on. I wrote the other preschool families a letter asking them to get their flu shots and other vaccinations in order to help keep Samson safe. While Josephine is a little better at sanitizing and understanding the spread of germs, the twins at 3 and just now 4, give Samson whatever they have, no exception. Immunizations are something of a hot-button topic here, but I am happy to say that I got a nearly universal positive response. Only one mother called to advise she would not be "forced" into getting her children shots. She later called back to say that her naturopath had told her she really ought to "help that poor woman" (me) and get the flu shot for her kids, and she did.

Of course, I can't force anyone to do anything to help me keep Samson safe, and, if you know me, you know it pained me to have to ask for help.

While isolation has been the general rule (and really, who better to be isolated with than four fun-loving kids who like to bake cookies?), we had some wonderful exceptions as well. Shortly after we had Samson's central line removed in August, we celebrated our new freedom from the 10-minutes-to-the-hospital rule by flying to the east coast to play on the beach at Aaron's mom's home in Delaware. It was a great trip for us, if a little trying for the airport security guys I bossed around. Actually, they were very accomodating. I had them all change their gloves and sanitize the inpsection areas before I let them touch Samson's cooler of medicines and milk, or any of his other things, and everybody had a good attitude about it. We also got ourselves on the plane first and used handfuls of clorox wipes to secure the area before the kids settled in. I tried to make Samson wear a mask but that was a failure. Mostly Samson was surrounded by the rest of us as a germ barrier and we were pre-cold season, so not a lot of coughers around. I am glad we went then, and no sickness resulted.

It was delicious to see Samson, and all of the kids, enjoying the beautiful outdoors as well as the busy travel scenes. We groaned about it, but there is nothing better for my kids than a day that includes lots of packing, a taxi ride, two plane rides, a bus ride, a rental car, and a grandmother!

We also had a great short trip to the Oregon coast over Thanksgiving weekend, and then a million smaller trips out the door that kept things fun -- soccer games and trick-or-treating, a little bit of shopping, a lot of mexican food, some bowling -- and visits by lovely friends. And of course we wrapped it up with a beautiful Christmas -- a perfect dinner with friends and family, fun new toys, and a sense of great hope for the future.

As he makes medical progress, Samson has also made great strides developmentally. He has some very good therapists who help him and who also help me keep my head in the right place. We go see private therapists, and we are also visited at home once or twice each week by Early Intervention therapists.

Samson doesn't talk or even crawl yet, but he is trying. When I remind myself that in the late summer, he couldn't even sit alone, it seems miraculous where he has gotten himself now. Two months ago he was too weak to lift his own arm to shoulder height to reach for a toy, and he hated being on his stomach because his face would be planted firmly on the ground. Now he can reach overhead to put balls down a chute and he can happily bear weight in an all-fours crawling position. He has not quite gotten to pulling himself forward, but he backed all the way down the hallway this week, then spun around to look at the Christmas tree lights. Samson's work, and his progress, has been on many fronts. He came home from the hospital reluctant to drink even milk, and he had not started solid foods because he had been too sick. Now he can put away a bowl of mac and cheese along with the rest of the crew. All of this eating has helped him work on those facial muscles, and though we aren't quite to words yet, he is making a much greater variety of sounds.

Do I want him to be running around and helping me make pancakes and chiming in on the constant mama chorus around here like he "should" be? Yes, I want everything for him, fiercely. But at the same time I am inexpressibly proud of what he has done already. And I am excited about taking the next steps with him -- what will he do next, and how fun will that be!?

I believe in Samson. I have no idea what his future will be, what he will be capable of doing. No one knows what his disease has done to him -- the trouble breathing, the early failure to thrive, the defective blood cells. Could he have had a stroke or other brain injury? We have chosen at this time not to test him any further -- we prefer just to let him show us who he is. Nor does anyone know how much his "cures" have or will hurt him -- the steroids, the radiation, the chemo, all the drugs I gave him over and over every day. And no one seems able to help me sort out what damage it does to a baby to simply miss out on the world for a year and a half. So I pretty much don't know a thing, but I believe in him and I have to believe we will figure out the future together and that it will be a good future.

I sat down to update this blog after I put together our holiday card, where I began with: what to say about 2010? I wondered, do we skip the card this year and pretend it never happened, or do I copy a picture of us all smiling and stick with "happy new year," or what? We decided to go ahead and do our yearly update letter, including Samson's news, because we are so proud of our little survivor, and because we have friends we haven't contacted this year, who have no idea about Samson's story. We want them to know. This was our year, we survived it, and sometimes we even loved it. And I'm glad it's over. Hello 2011.