Friday, November 2, 2019

We had been warned earlier that week, while still admitted in the hospital, that they had some training in store for us. They ended up letting us be discharged with only some basic training, mostly centered around the administration of the blood thinner they put Eli on to prevent blood clots in his swollen leg, with the understanding that the rest of the multi-hour training would be given during our next admission. This was an understatement.

We were admitted to the hospital before lunch. While Eli was being hydrated, the training began. One of the first decisions we had to make involved future fertility. Do we or do we not try and obtain a sample of Eli’s genetic material and preserve it for the future, in case the meds make him infertile? Had Eli been able to produce a sample without medical intervention, it would have been a no brainer. However, he isn’t yet able to do so, which means it would require a surgical procedure. Then, there is the not knowing whether the sample would be mature enough to be useful (current medical science isn’t able to make use of immature genetic material from males–my kids read this blog and don’t like me to use the word “sperm” for some reason). Lastly, there haven’t been sufficient studies to determine how likely the chemotherapy is to cause future fertility problems.

So, with nothing close to a guarantee that preserving Eli’s genetic material can even be used and not knowing whether it will be necessary, we had to decide what to do–before starting chemo. Eli, my kid who claims to want 20 or so kids of his own, seemed to only care that he not pass on the likelihood of getting cancer to his future kids. We tried to explain the situation to him and the decision that needed to be made, but he didn’t really grasp what we were asking. So we had to decide for him. I hope he is okay with the possibility of needing to adopt. I hope he lives that long.

Then we were trained on all the things we had to know to manage Eli’s care. Overwhelming would be an understatement. I am writing this months after that day and I remember one person after another coming to the room to talk to us about one aspect or another of his care. All day long. I sat there and my mind started to drift and I had to give myself a mental shake and refocus–Elaine, this is important, you have to pay attention.

That week at some point, one of our nurses told us the needle size they use for Eli’s port when they access him. She said someone might ask and that it’s good to know. Well, a week or two later someone did ask and I couldn’t remember. Eli piped up, “3/4 inch”. Good thing I had him there to remember.

The good news is that his leg swelling had gone down within one week of that first treatment.

I saw a familiar face while walking to the elevator during that hospital stay. It was someone from the ER team the day we’d gone in for diagnosis. The day that marked the change of life as it was. She recognized me and asked about Eli. I told her what the diagnosis had finally been. I still can’t think of that week without wanting to cry.