July 28, 2016

Just providing a status update with our new treatment plan and such..

We are in full swing of our new "aggressive" chemo plan. Today will mark day 3 of 5 of chemo (instead of the once/week previous regimen). This week has been pretty rough as expected, and Cole has felt  terrible.

After having about 4 mornings of vomiting since last week/weekend (most likely from the feeds and maybe a combo of things), since Monday he's pretty much felt nauseous the entire day each day. He's vomited about once per day but continues to feel nauseous the entire day. He's taking 3 medications for nausea and pretty much sleeping all day.

He also feels weak and puny as expected, so the last two days he hasn't even gotten up to go do his short walks..which isn't good because he needs to move around, walk, do physical therapy, and his breathing exercises for his lungs. We HAVE to keep the lungs open as he's started building some pockets of fluid and we can't let those increase or get bigger given everything else already going on in there. But again, he's sleeping the majority of the day now so he's just lying there which doesn't help the lungs. We'll have to figure out a plan to get him moving even though he feels so poor.

One small positive, but we must celebrate any positive, is that the past two days he's spiked fewer fevers. He went from 4 spikes per day to 2. While his temp may elevate to 100/low 101 range, he technically hasn't "spiked" a fever where he gets Tylenol, etc. Last night his spike went up to 104 which hasn't been that high in a long time. Typically our spikes are the upper 101's to 103.  We'll see how today goes.

Our heart rate has been very high the past few days so they're watching it very closely, but this can be expected from the chemo and what's going on. However, with the 104 fever his heart rate went up to around 185 (yikes!). Blood pressure has also been high, which was expected from one of the chemo meds so he's getting medication for that as well. Also having a bit more pain the past few days so he's getting some additional pain medication too.

So, about the whole hair loss thing...after discussing it more with Cole he finally changed his mind and agreed to get his head shaved. I am so glad he decided this as at the rate we were losing hair and it was about to get a lot worse, I hated the thought of him waking up to large clumps on his pillow/bed. So both Cole and daddy got their head's shaved Tuesday evening. I cried at first and had to fight back from letting him see it, but then I was able to put my game face on with a smile as he finished. And at the end of the day, he still has the same sweet, beautiful face that he did before. Who knows if he'll lose his eyebrows and his long, gorgeous eyelashes (that every single person comments on, and sadly he didn't get from me 😕), so we'll see. That seems to vary by person so you never know where else you'll lose hair. He seems to have adjusted for now, but probably because he feels so crummy otherwise so that's the least of his concern.

We knew this would be a rough week and tough to watch, but we remind ourselves that this is the fight we've been waiting for. We need these treatments and we HAVE to believe they will work. It will be several weeks before we'll know if they've started working or not, so in the meantime we WILL push through the rough patches and maintain our faith that Cole is on the road to healing.

Thank you for the continued prayers and support. You ALL are amazing!

#TeamCole🎗