Here is Jamesie with the newest member of his menagerie. As you can see, James has acquired yet another giraffe, a larger, plusher species. If you look closely you can see that he is peeking at you through the his giraffe pacifier, which he simply cannot shove far enough down his throat. He's also saying "Way to be an idiot and not turn off the flash Daddy." James is very technologically advanced like that, he always turns the flash off before he takes his phone self-portraits.
Today did not go as planned. Although that's true of most of our days lately, today in particularly seemed to just start off on the wrong foot and never really recover. I spent the night at home, which was nice. I slept about 11 hours until my mother woke me up inadvertently when she came in to get something. I showered again, shaved for the first time in a week, and went to the hospital.
The day was already in full swing- James was taken to get his EVD out soon after I arrived, and we were told that we could get to go home tomorrow. Things seemed to be going well. A certain frenetic energy was on the floor today, the staff seemed a little flustered and the floor was crowded. Things took a little longer to get done.
James threw up after he got his EVD out. There was some concern about whether or not that translated into more swelling. He went to a rapid MRI, which showed there might be a complication from the surgery. He threw up the steroids they gave him. Housekeeping never came to clean it up. A surgeon came around to talk to us for consent to get in a port for his chemotherapy. He threw up again immediately after, before we had time to process. We cleaned again. Housekeeping ignores my calls.
In the middle of this, everything stopped. We'd been told the oncologist would be visiting us at some point in the day to tell us when we could go home, etc. and just briefly speak with us about the results of the surgery, whether they'd need to go back in and get more based on the MRI results.
We were not expecting results. In a strange way, the fact that we weren't expecting them made it a bit better. Unlike yesterday, we weren't waiting all day for something to happen. Something just happened. When she came in all was well- the corner where she came to talk to us was a little crowded, so we sat in chairs and she, unable to find a spot, just sat on the floor. That's the kind of person she is apparently, and I like that.
Once we sat down she informed us, from the floor, that James has an atypical rhabdoid tumor. As many of you know, this was the exact opposite of what we were hoping and praying for. We were upset, but fortunately she remained very calm. Before speaking with us, she'd written up a treatment plan for James. She explained to us that the type of tumor James has is very rare. It is a type of tumor that occurs exclusively in children under 2 and is very aggressive. There are perhaps 30-35 reported cases every year. Five years ago, she said, this diagnosis meant death. Now, however, treatment is possible. The type of treatment James will undergo is very intense and very likely to change our life forever. James' treatment plan is designed to last 52 weeks and will likely go longer depending on how he tolerates it. We will undergo three week rounds of chemo, beginning each with a few days in the hospital before we can go home. The side effects of the therapy will be significant. The list of drugs they gave us that James will be on is over twelve pages long. I have yet to fully process this. Halfway into the conversation Kara joined our oncologist on the floor. I remember thinking that of the many different ways I imagined this situation once I knew it might happen, none of them involved my wife and the doctor sitting on the floor at my feet, with the doctor's PA, myself, and my father sitting over them. There is no known cause of this disease. As the doctor said, it is just really, really unlucky and unfair. There may be a genetic mutation that contributes, but that's a low percentage shot. James, Kara and I will be tested anyway.
After the diagnosis, the day passed quickly. We called family. We tried to make sense of things. James still couldn't eat- he had to get an ultrasound on his kidneys- if the tumor has spread anywhere other than his nervous system (which was clear based on previous testing) it would be there. The ultrasound meant he couldn't eat until afterwards, and as he threw up everything he ate before, this meant he was starving, and furious about it. We spent the afternoon trying to entertain him. Finally, we went to the ultrasound. We won't know the results for a while. Now we're feeding James, trying to take advantage of the short window between the ultrasound and the 12:00 cut off for food due to his surgery tomorrow.
Despite the diagnosis, we are looking for the positives. James will lose his hair. Fortunately, James already has had more hair in his life than almost every baby his age. At his first hair cut, the hairdresser commented she'd never seen a baby his age with that much hair. Perhaps God knew James needed to start with as much hair as possible, so that when he lost it he would already had a good run. Perhaps Kara and I are James' parents for a reason- I'll elaborate on that later. Likewise, there is a treatment for this. Survival is possible. In the five years that Kara and I have been married, treating this became possible. When Kara and I got married, nothing could be done about this. Now something can.
Below is an old picture of James- he's a few weeks old. He's trying to crawl over his boppy and get at me. He's always been an active, able boy. He can fight this, and he will. I take comfort in the fact that in a few years, he will have no memory of all this, the entire year that we will spend battling this disease. He can grow up without the burden of that experience.
The last week felt like a lifetime. I cannot imagine what the next year will feel like. I am thankful for everyone who has volunteered to walk with us, to pray for us and support us. We will certainly need the support, and your thoughts and prayers have already meant world to us. Thank you.