Thursday, January 29, 2015

Biopsies, Scans, and Max. Oh, my!


Things have been a bit hectic for the last couple weeks. We finally found an antibiotic that Max's system could tolerate without throwing up, which luckily cleared up his lingering sinus infection and flu-like symptoms that we have been dealing with for months. This meant that Max was finally healthy enough to... go to the hospital three times!

SCORE!


We are still dealing with that lesion in his mouth-it is much less of a lesion now and more just gum and tonsil swelling-so it was time to do some more tests. We started with a head and neck CT scan to try and get a better picture of what was going on and see if this thing extended up or down from his throat. Since Max is so little, a CT scan involves anesthesia and therefore he can't eat for up to 12 hours, which is a very long time for our little skinny guy to go. However, like always, he was a trooper and held strong even though the radiology department was backed up that day. Things went as smoothly as they could have, and although it was a very long day, radiology had us in and out as quickly as they could. Everyone we dealt with was fantastic and we couldn't be happier with them.

The results were inconclusive, but they didn't see anything concerning, which is great. Nothing is growing or moving towards his brain, and that lesion is very localized. This means that whatever it is, it hasn't really spread away from his mouth. Since the CT didn't show us anything too concerning (yay!), everyone decided it was time to do another mouth biopsy and scope. We were not to thrilled at the idea of Max having two procedures within a week, especially since he just started to feel better and gain weight again, but we really want this whole mouth issue to be resolved.

We ended up scheduling the biopsy a couple days later in which we had the first appointment of the day. This is great because it means that we are in and out rather quickly, the hospital isn't as busy, and Max doesn't have to go without food for as long. The downside is that we have to be to the hospital by 5:00am, which is always fun, but we are almost use to it at this point. Sleep is for the weak, anyway.

No sleep 'till, NEVER!


The procedure itself went very smoothly. Max's ENT is very professional, no-nonsense, and very good. He doesn't sugarcoat anything and is straightforward with us, which is something we really appreciate. He said Max's mouth looked better than in November and the scope down his throat showed nothing to be concerned about. Max had a couple little cysts along his esophagus, but that is fairly common and can be easily removed if need be. He took three biopsies this round, which is really tough on Max, but that hopefully means that we won't have to do this again. The ENT was a little concerned that the growth/lesion/swelling in Max's mouth looked a little reminiscent of HPV-yes, that HPV, there are over 200 strains of the virus and about 20 of them center on the mouth. It is a virus of the DNA, and is in the same family as HPV the STI. Out of the 20 or so oral strains of the virus, 9 of them cause cancer.

We haven't received conclusive results of the biopsy yet, but we are hoping and keeping our fingers crossed that this thing isn't something that serious. We knew that Max is at a highly increased risk for cancer because of the intense medications his transplant required, but we didn't think it was something we might have to deal with this soon. The good news is that either way, it appears to be localized, so if it turns out to be malignant, it should be treatable. And if we have to, we will get over that hurdle as well.

We were able to take Max home later that day because the ENT really didn't want us to spend any more time than we had to in the hospital, which is good seeing as how measles is now apparently in Phoenix (don't even get me started on that). We are trying to keep Max healthy and the biopsy was to help ensure of that, so no one wants him to get sick as a result. He has had a slight fever since the biopsy, but that is to be expected, especially since one of the samples came from his tonsil. Like always, Max is taking things in stride and continuing to do well despite everything that gets constantly thrown at him.

Pictured: Max. 

Since Max has been dealing with a lot lately, our clinic visits have been a little more frequent. We had a quick check-up appointment on Monday, and honestly, it was one of the best appointments we have had in months. Max is gaining weight at an almost typical rate-somehting that has NEVER happened- he is growing, and everyone was happy with his progress (this is such a 180 degree shift from the last few months and a much-needed surprise). Max is actually in a height/weight percentile again, which is incredible. This is all happening after being so sick, having two procedures and not being able to eat for almost 24 hours last week. Even with that, he gained almost half a pound in the last couple weeks, which is a HUGE gain for him. The antibiotic seemed to really help, so he obviously had something bacterial going on that was eating up a lot of his calories. If he was able to gain weight during a week with two hospitalizations and low food intake, we obviously were able to fix something that was going on.

So the last few weeks have been a bit of a doozy, but we are still chugging along. Max turns one on Tuesday, which is a milestone that gets me a little choked up just thinking about. It seems like yesterday that we were told that Max might not make it to birth, and now we are going to be celebrating his first birthday in a couple days. We have come a long way, Max has come a long way, and I couldn't be happier. Sure, things are constantly stressful and extremely difficult, but when I take a step back and look at the looming accomplishment coming next week, I can't help but smile.

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