A taste of Eli's medicine

A taste of Eli's medicine

I like to think that because I have been Eli's primary caregiver from the beginning, I have an intimate understanding of what he is going through. And on some level I do. But really, I don't. No one is poking and prodding me, taking 1,000 X-rays, pumping poison into my body, restricting my liberty and my diet.
Until now.
The doctors have decided that the best treatment for Eli is an additional haploidentical transplant (half match) along with the unrelated cord blood stem cells. Oh, and granulocyte transfusions (white blood cells).
A haploidentical donor is a biological parent. Two biological parents should each be a perfect half match to their child's HLA type.
And granulocytes? Those are like platelets in that you don't have to match blood types. BUT they don't live long and are not typically sitting in great number on a blood bank shelf. Plus, a person needing granulocyte transfusions will more than likely need them ongoing, so then you get into concerns like stacking up the variety of donors. Realistically, it's better for the body receiving transfusions to have as few donors as possible. So with all of those things in mind, they like to use a parent as the granulocyte donor. We are physically present, usually healthy enough, and as they say, "invested".
It makes sense that all things being equal, either Jerry or I could be the donor for the haploidentical stem cells or the granulocytes. But I'm here, and it's just easier if it all comes out of the same person. Less paperwork, less appointments, less testing. So I'm the big winner.
To get my blood easily and regularly they are going to put a central line in my chest. On Tuesday.
Yeah, it kinda got real when they made those plans. Which brings me to my point. Any parent would jump at the chance to DO something to help their child. I've been wanting to DO something since August. And now that I am? I am surprised to find out it comes with a side of anxiety. Not a terrible amount, just more than expected. I figured on a scale of 0-10, I'd be feeling level 1 or 2 nervous about getting a line. I'm actually more like a 4. I'm just so surprised by that.
Maybe you're thinking, "Ok sure, but it's not that big a deal." Um, yes an no. Yes, they do it all the time. And they also treat infections from lines to people that have to be hospitalized all the time, too. A catheter from the outside of your body into your heart is not without risks. It should be fine, but again, not without risks.
And then there's the care of it. It can't get wet. I can't imagine it's terribly comfortable.
Additionally, I will gain patient status. So I'll be a caregiver and a patient, which can be tricky, especially when I have to go to the clinic for several hours a couple times a week to have my blood taken, processed, and returned, and my dressing changed. It makes a HUGE difference that my mom is here for a long while to help care for Eli. Really, my mom being here makes this whole crazy (to me) plan possible.
Since they'll be taking my white cells twice a week they'll give me injections twice a week to up my white cell production, and I have to keep my iron levels up. So I'll be eating meat like it's my job. Ugh.
Now that I'm staring down a central line placement, I have an entirely new appreciation for what Eli has gone through. He's had a line of some kind for 8 months, not to mention ALL his various treatments and hospitalizations.
I absolutely have no second thoughts about doing this. My love has no bounds. I think science is incredible. I just get to anticipate it for several days. And then I get a small taste of what my baby and all our little fighter friends are going through.
And eat a lot of meat for next few months. :-/
Wish me luck!