Today James had his birthday party. He is 37 weeks old. As you can see the theme is appropriately giraffe. Jamesie the Giraffe demanded it. The party came together quickly. Long ago, i'd thought as James' birthday would fall on a Saturday, I'd do a tailgate themed party and watch the game. I wanted to show him all the different positions he could play, and encourage his athleticism. He gets that from his mother- I am aggressively uncoordinated. James never suffered from that, even as a two week old baby he rolled over, refusing to sleep on his back. We were so scared of SIDS and him somehow suffocating. That seems so silly now.
We had a cake from society bakery- a vanilla on vanilla cake with his name and a wonderful giraffe on it. Every time before now when I've called there to get a cake I've been told to wait a week. Today I got one the next day- sometimes, things do break James' way. The cake came out better than I expected, and was delicious on top of that.
Giraffe everything. Even a five and a half foot tall giraffe in the corner. His Uncle Tony cooked up squash and asparagus, while his Papa Jim and Uncle Patrick grilled steaks and chicken. Uncle Matt supervised and nursed a beer. James even tried some of his cake, washing it down with some mommy milk. He can barely swallow now, but he managed to get the icing down. Like so many things I once made a priority as a parent, offering vegetables before sweets is simply no longer on my radar.
When the day started, I did not believe we would have a party. James woke us up at 3:00 AM seizing, thrashing in his Moses basket in the slow, rhythmic writhing we've come to associate with his seizures. We waited five minutes as instructed and gave him Ativan. No effect. We waited another five minutes and gave another dose. Nothing. We called the hospice and gave another. The triage nurse returned our call and said the on-call nurse was on the way, and told us to give another dose of Ativan. We did. Nothing changed. The on-call nurse said she was 30 minutes away 30 minutes after we first called.
Panic ensued. We called Kara's Dad, a doctor, and started giving James phenobarbitol, his other seizure medication. He kept seizing, legs bicycling slowly- he barely has the energy to even seize properly anymore. Finally, the hospice nurse arrived. I'll be honest, if I didn't think my son was dying I would have throttled the woman. Used to working with adult patients, she seemed to have no idea what to do with us. Wide-eyed and confused, she kept saying over and over "I'm so sorry your son has a brain tumor." "If there's one thing I do not need from my medical professionals, it's cancer eyes. Especially when they think he's dying. If you can't help, get the hell out of my way. She literally asked "Do you think he's seizing because of the tumor?" Why yes, yes I do. She fumbled with the name of our oncologist. She couldn't get the spelling right to call. She finally managed to get a hold of the on-call oncology doctor. By this time I'd ordered her out of the room and we'd told Kara's Dad to do the actual talking with the doctors.
If she displayed mere incompetence, our third year resident friend actually managed to make things worse. When we told him what we'd given James, he informed us that he would rush James to the PICU immediately because that much ativan and phenobarb would cause respiratory arrest. When informed that James' head was literally swelling because of the tumor, he said "Oh Jesus." So that didn't help much. Convinced we were losing him, we cradled him in our arms while he was still seizing, sang to him, and told him it was ok to go and that we loved him very much. I called my family and told them it was time and to come. I used the word respiratory arrest because it somehow sounded cleaner than dying. By this time, Kara's Dad had our usual pediatrician on the phone and she told us that James was not dying, and we could give him more phenobarb. So we did. It didn't all at once- but James breathed fine. Exhausted, we fell asleep. When we woke up, James was still alive. So were we. Concerned phone calls from our oncologist (who I think have probably given that poor resident quite a tongue-lashing) led to a new plan for James' seizures and pain medication, as it's very possible at this point his movement is a pain response, and as he can no longer cry, something we need to address in a different way. Together, the changes- the medications delivered to our home by our new friends from hospice- appear to have worked. James is at peace once more. The experience shook me. Having an academic understanding of the fact that your son is at home to be at peace is one thing. It is quite another to hold him in your arms and believe he will be leaving you soon.
After napping throughout the day after our adventure overnight, our families reconvened at our house and we hosted James' party. Everything fell into place naturally, with all the people that love him surrounding him. We'd never planned to do this today, we just did it. Kara mentioned it a few hours before it happened, and in those hours we put it all together. We sang him happy birthday- the boy deserves to hear it at least once, and sat around and talked. People took turns laying next to James and holding his hand. I believe that he knows how much we love him, and that he enjoyed his party. Jamesie always liked a good party. The most important thing now is that James know how much we love him. When we first learned of his diagnosis, we committed to being positive about this experience. Although our plans have changed drastically since that day, we remain committed to that. I do not think James is well-served by a gathering of friends and family on death watch, mourning him even while he lays next to them, breathing and looking as beautiful as every. I think celebrating his life, celebrating the joy he brings into our life, is the better choice. And so I choose that.
That's not to say we don't break down- we do, often and about the strangest things. His firetruck in the corner- he used to love to honk the horn, he got a kick out of making it go over and over again. Reminiscing on a walk about when mommy was pregnant with him and could barely make it around the block last summer. A thousand small things, as our very identity is tied up in him. But we can't help him by doing that. We can only love him. And so we do.
I continue to be overwhelmed by the outpouring of support and love for James. Hearing about how his story has impacted people positively warms my heart. Please continue to pray for James, that he continue to be comfortable and at peace.
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