Samson's first birthday was, overall, a beautiful and fun weekend at the beach. It took several rounds of cupcakes and happy birthday songs before we finally caught Samson awake and not crying, the day after his actual birthday, but he still wouldn't smile for the perfect birthday picture. Just to be clear, he was happy and laughing most every minute between attempted birthday events. Hopefully this is the stubborn nature that will serve him well in the weeks to come. Do you think he got that from his father or what?
In other news, we are now officially living in the hospital. On Tuesday afternoon (Day -7, counting down to Day 0 for transplant) we checked in for Samson's central line surgery. I stayed in the surgery area waiting room while Aaron unloaded the car and got us all set up on the oncology floor. When Samson woke up, he and I were transported up to our new home: tenth floor, room 11, view of the trees. Aaron had all our toys and clothes and snacks set up, including my secret cooler of dairy products. It's not clear whether I am allowed to have the cooler since my planned refrigerator was vetoed for "infection control." So I am taking the conservative route and hiding the cooler under the sink.
Samson did ok with the surgery, but he has a lot of bandages because the first two sites attempted did not work out. He ended up with a line that goes in a vein in his neck. The line then tunnels under his skin and comes out of his chest. The neck incision will heal up and he will just have the tubes coming out of his chest, which we can use for medicines etc, two at a time. It's pretty grim looking and looks lumpy under a shirt. Early on after surgery he was needing oxygen, but weaned off quickly. He was painful and miserable for quite a while Tuesday night but improved towards the middle of the night and woke up in the wee hours of Wednesday hungry and smiling. What a relief.
On Wednesday, Samson was mostly happy, if a little puffy and out of it, except for the dressing change on his chest wound, which was brutal. He had his first chemotherapy starting mid-morning and did just fine. The drugs take about 3 hours to go in through his central line, from 10 to 1. The drugs he got Wednesday (and is getting again today and Friday) -- treosulfan and fludarabine -- are expected to cause some nausea, so they pre-medicated him with an anti-nausea medication, which they will do each day he receives chemo. His urine will be full of the drugs, and the treosulfan especially can cause a bad rash, so we are changing diapers constantly. I was advised to wear gloves changing his diapers if I was planning on becoming pregnant. Hmmm. I think not.
Samson is also on a stack of other drugs -- including anti-fungals, anti-virals, and antibiotics. Also the anti-nausea med, some anti-liver damage medication and lots of vitamins. Most of those are taken orally as long as he will tolerate them.
Finally, Samson got a transfusion of packed red blood cells Wednesday afternoon. His hemoglobin was low in the morning, probably because of the surgery Tuesday. Apparently transfusion of blood products -- red cells and platelets -- is pretty common throughout the transplant process. If his counts are low, they will replace what he is missing so he doesn't have problems with oxygen circulation (the red cells) or bleeding (platelets). That transfusion took several hours to complete but he slept through a lot of it. Later in the evening he developed a crazy red rash all over his body that we treated with Benadryl. It faded and he became more comfortable after the Benadryl. The doctors think this was a reaction to the blood transfusion, which they say is not uncommon.
This morning, Samson woke up after a decent sleep and seemed more himself, less puffy, hungry for some milk. The second infusion of chemo drugs just got started. I am feeling pretty positive -- hopefully Day -5 will treat us well.
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