The past couple weeks have been soooo crazy. Since we’ve got the news that Kevin should be admitted sometime in May, the appointments have kind of been non stop.
Last week Kevin had a CT appointment (which he did SO great for, I totally wasn’t expecting like), ultrasounds on his heart (Echo and EKG) and other organs.
He had a hearing and speech test done, which didn’t turn out how we hoped it would. Kevin’s last round of chemo wasn’t nearly as intense as what we should be expecting in the near future. The chemo used in the past and the (more intense) chemo that will be used are both ototoxic, which means they can affect the hearing of the person receiving it. We knew Kevin was a little delayed as far as speech. He’s 22 months and *should* be able to say 20-30 words and form two to three word sentences and by 2 he should be able to say close to 200 words and form more complete/coherent sentences. Kevin can probably only say about 8 words and doesn’t really form sentences. His hearing isn’t looking too great either so we’re looking at following closely with speech and hearing.
He had a TON of labs drawn, probably the most I’ve seen them take in one draw. They told me they had to do more than they usually do because they are doing the final tests for the bone marrow donor matching just to triple check things and make sure nothing has changed on Kevin’s blood work (since the last time he was checked for the bone marrow registry was a year ago).
We had an actual regular pediatrician appointment too! Oh my gosh, this was soooo weird for us. Typically we’re used to seeing his BMT doctors twice a month and he always gets labs done and all kinds of other stuff and the appointments usually go for a couple hours. We were in and out of his pediatrician within 30 minutes. It was like “oh my God is this what it’s like for everyone else?” It was awesome. I only had to drive 10 minutes down the road (VS my usual 3 hour drive) and I was able to look less like a freaking train wreck. It was definitely refreshing and gives me hope for what things are going to be like once this is all over.
Unfortunately, we go back to a super busy schedule next week. Kevin has got a neurology and psychology appointment to set up some sort of a baseline, just so they can keep track of his development as he goes through the next BMT. We also have a dental appointment set up for him (I’m 100% NOT excited about this), just to check out his mouth for any signs of infections or cavities.
Its all been a little overwhelming (especially since Children’s Hospital of Los Angeles is over 60 miles away from me) but we’ve done all this before so we’re just trying to push through it all. We’re really hoping for a May admission!!! I’m extremely nervous about this next BMT. The first one was just heartbreaking as it is, and for them to say that this next one will be worse and more intense isn’t very reassuring.
As always we really appreciate all of the well wishes and prayers. Our support system is truly amazing!!