Immunotherapy Round #3

An extended stay

One thing Noah has begun to articulate with his ever growing vocabulary are statements of value. Things are "good ones" or "very cool". One thing in particular that Noah likes to say is "very good" is Noah's home.

He likes to be home.

And, after a bit of an unexpectedly extended stay at the hospital, Noah is back home from his third round of immunotherapy.

In the time leading up to his admission on the 24th of January, Noah had been building up his weight and strength. He wasn't as active or brave as he has been but he was certainly in better shape going in for this round than he was at Christmas. The C. diff did come back almost immediately upon returning home in early January but, because it was anticipated, the antibiotics were ready and the treatment took affect in time to prevent the really awful outcomes experienced with the first infection.

And for a couple of days before his most recent trip, Noah was able to climb on snow piles, dance around the living room and live free of the NG tube. It was great.

Being his third round of this immunotherapy treatment, we've begun to brace for the expected affects the drugs have on Noah. There are a couple, most of which are really unpleasant.

Most unpleasant (and sometimes funny, but mostly unpleasant) are the effects the immunotherapy drugs and pain medications have on Noah's mood and personality. He becomes what can only be generously described as an "angry drunk". Bossy, moody, tantrum-ey and illogical. He can sometimes be soothed but only through distraction and re-direction. Because this isn't really Noah, Kim calls this boy, "Charles". I prefer "Master Colin", though the reference is lost on most. Regardless, this version of Noah lasts only as long as the drugs are in his system, which brings Noah some relief in the mornings. As well, things tend to get better as the week progresses.

We've also learned, after three rounds, that Ativan does not relax Noah. He is usually given Ativan on the first day of treatment to help with a bunch of the unpleasant procedures (catheter and NG tube) that need to be done to help get him through the week. Unfortunately, Noah has an uncommon but not unheard of "opposite of what is intended" reaction to Ativan that gets him hyped up and only exacerbates the affects of the other medications he is on. What this means is that Monday was not a good day. "No Ativan" is now in the chart.

Mostly what we expect is for there to be long days of movie watching where Noah is in bed, constantly monitored, usually antsy and always wishing he could go home.

And now we're also learning to expect the onset of C. diff which, once again, is causing problems for Noah and his digestive tract.

More likely than not, the C. diff never really went away between rounds. Something about the immunotherapy messes up his immune system/response (which is not surprising) and gives the bacteria causing all of Noah's problems the chance to make a comeback. It's being treated once again and the plan is to keep Noah on a longer course of antibiotics in the hope that the next two in-hospital rounds will not result in more big flare ups.

Something new

While in treatment, blood samples are taken daily for both the blood work that is used to track his counts and to perform cultures that ensure that there are no infections floating around in Noah's blood.

This, of course, is an important part of keeping Noah safe and healthy. Blood infections can be really dangerous for someone who is immunocompromised and who has IV lines going through both a port in his chest and a vein in his hand. Left unchecked, blood infections can lead to sepsis and so they need to be addressed.

Wednesday, cultures came back positive for something that could not be readily identified and so Noah was put on a broad spectrum antibiotic. Even though there is always the chance that the cultures could have been contaminated, the preventative antibiotics are always given. This is because the cultures take at least 24 hours to yield results and, in that time the bacterial infection continues to spread. And right now they can't take those kinds of chance with Noah's health.

Interestingly enough, the next day's cultures came back with different results. I say interesting, but really it was quite concerning. The new and different bacteria they found (the name of which I can't remember) can cause quite severe infections and is quite serious. The infectious disease doctor noted that the bacteria found was not very common. It usually only affects, "dirty wounds" and is not in the blood. In any case, it needed to be treated.

And this is why we have only come home today as opposed to last Friday. The antibiotics used to really attack the bacteria had to be given intravenously, three times a day and so Noah had to stay until enough of the daily cultures came back clear. Then he could go onto an oral dose and finish this different course of antibiotics at home.

Today Noah got the green light and came home. There is a scheduled ultrasound on Friday, just to make sure there isn't anything untoward going on in his belly that could also be connected to the infection. By "anything untoward" I mean something like a "bag of puss". Not appealing.

Back home and looking forward

Though Noah is not back to his usual self, he is doing pretty well and probably as well as he was at the end of the last round. Either the bacterial infections or one of the three antibiotics is reeking havoc on his digestive system and so he is really struggling with diarrhea and rashes. Beyond this, his spirits and mood are high.

We look forward to some time at home and some time spent healing. His gut, which has been in rough shape since the first round of the stem cell transplant, will probably not get the time it needs to recover but we pray that it will be ready for the next round at the end of this month.

Because this is when Noah will begin his fourth round of immunotherapy and his second to last scheduled hospital stay. For now, we are grateful to, once again, to have our Noah back at home.