Chemo

Hello all! Oakley started chemo on the 23rd. His first day he had (and I apologize in advance for misspellings) fluaderabine and treasulfan. The regimen that he is undergoing is a clinical trial, as the treasulfan isn't fully approved by the FDA in the US. He reacted quite well, didn't get sick too bad, and was in a pretty awesome mood. The only thing noticable was that they were having to chase his blood sugars around a bit. The second day was the same routine-fluaderabine and treasulfan. He wasn't as happy, but still not nearly as sick as we had braced ourselves for. His sugars were higher, and they were chasing them still, and unable to get ahead of them. He got a fever in the afternoon, but still seemed like he was doing well. The fluderabine can cause feers, and fluid shifting, and the treasulfan causes nasty diaper rash, but he really only showed fever thus far. That night, as Trevor and I slept, Oakley's sugars continued to outrun the team on the SCCA (Seattle Cancer Care. Alliance-bone marrow transplant ward of Seattle Children's) floor, so we were woken up to a nurse telling us to pack up, we were moving to the Intensive Care Unit. Oakley had started breathing quicker and still had a fever, and was so high on his insulin pump that they couldn't do his dose within their guardrail. Basically, they sent us to the ICU over .05 cc's of insulin per hour. They could have just updated his weight in the pump, but instead, they sent us to ICU. They used the excuse that they might have to intubate him at some point, and they didn't want to have to do it in a hurry. (I'm still bitter about all of this. I feel like everything was in their scope of support, ye they sent us up to ICU because they're lazy and not savvy enough to deal with diabetes)
Once we got to PICU, they ra all of the usual tests to check for infection. They did blood and sputum and stool tests, all of which came back negative. They said they wanted to do a CT scan, and they told me they wanted to intubate him for it. This was a stupid request in my opinion. They wanted to be able to inflate his lungs in the machine at will-but the risks associated with putting a tube down a kid's throat, opening a passage for everything to get into his system-especially one who has a freshly obliterated immune system-is too big of a risk. The risk to benefit ratio on this is nearly 100 to 0, becaue they hadalready started him on broad-spectrum antibiotics, anti-virals, and anti-fungals...so even if they found something, they wouldn't change what they were already doing. The pulmonologists came in and said they wanted to do a bronchoscopy, so put a tube down into his bronchial tubes and lungs, with a fiber optic camera, and flush it with saline and then test the fluid. They said he's need to be intubated for that as well. Trevor and I talked it over, and pretty much told the doctors that we know our kid, he doesn't have an infection, this was his chemo, and that intubation wasn't a viable option at this point. The bronchoscopy would be to search for fungus, but his symptoms came on more quickly than typical fungi, and we weren't certain he needed it to look for something that was already being treated prophylactically. The pulmonologist was a greasy sleaze bag, who tried to treat us like we were dumb, and really pulled some used car salesman tactics on us. "I know you guys just want to be the best advocates for your child, and I repect that, but I think you don't realize that we just want to intubate him temporarily. This won't be a permanent thing."
Really? You mean you just want to shove a ladder for diseases to get down from his mouth to his lungs for a little while-just while has absolutely zero immune system? Well in that case, no.
"Well, I'm not a bone marrow transplant expert, but the BMT team really wants this test to be done so we can find out the reason your little guy is here."
The reason he's here is sugars,  and then a fever and heavy breathing from his chemo. They can come talk to us and tell us to our faces if this is required. You can CT him without intubating-you did last week.
"We would like to do a prone view-what that means mom and dad, is that we want him to lay on his tummy, so we can get a full view of his lungs. When he's on his stomach, we can see a different view than when he's on his back."
Really? You mean when you look at someone from one direction, and then flip that persn over, you can see a different view? No, I don't believe it. Is there something in particular that leads you to believe that Oakley is incapable of being laid both on his back, and then inversely, on his stomach without a tube down his throat?
"Well, we just can't make him hold his breath, so it probably won't work. I'm really just trying to help you be advocates.  I know things like this can be scary, especially when we don't have answers for you yet."
You mean why he has a fever? Or why his breathing is more rapid? Couldn't possibly be that the kid's red bloodcell counts are low and he's gone through two days of chemo, and is halfway through the third, could it?
By the way, day three was fluderabine and then ATG from a rabbit. ATG is terrible stuff, but he seems to be doing alright so far.
"Let me see if we can put an LPA in, that's a disc that blocks the airway from the digestive tract, and we can do the CT like that?"
Why does he have to have anyting? He does just fine in them without mechanical breathing.
(This went on, to the point where Trevor and I just spoke frankly, telling the doctor that nothing is wrong with Oakley, other than the fact that he has IPEX and is on chemo. Also saying that this was a ridiculous and unneccessary test, that was being proposed because doctors are innately unwilling to admit they don't know something.
We did the CT with no breath support other than his nasal cannula. It came out great, and clear. The BMT docs told me they never approved and definately didn't request that Oakley be intubated for a procedure. They told us they didn't even think the bronchoscopy was necessary, but the pulomonlogist suggested it, and they reponded that if, for some reason, Oakley's breathing got to the point where intubation would be necessary, then they could go ahead and do the scope.
Anyway, Oakley's doing well. His sugars have been more stable, but are bouncing around a lot and are expected to through this process. He's still on some respiatory help, they put him on CPAP today, but is doing very well.
Tomorrow is the last day of chemo-Rabbit ATG and fluderabine I believe, and I'll be so happy to be done! We get Sunday as a day of rest, then bone marrow day is Monday, the 23rd!
He's expected to lose his hair next week, as the drugs hang in his system for a while.
It's difficult to see the light at the end of the tunnel if you do not have the faith to enter the tunnel's mouth. We are in the tunnel, and the light from our surroundings is getting blocked by the cavernous walls and ceilings of isolation, chemotherapy regimens, and medical facilities, but we are in the tunnel, with faith that we will see the end soon.
Oh, side note, they won't let me nurse Oakley until after engraftment and he has leukocytes...so it could be months before he gets any breastmilk again.