We make jokes from time to time about the different departments at the hospital, how one hand doesn’t know what the other is doing etc, but this Thursday was a rare example of the opposite happening. We had an ENT appointment booked for 2pm on Thursday and I received a phone call earlier in the week from the Endocrinologist Dr Jan. She had looked in the system and seen Alex had an appointment, and made space in her schedule at 3.30 to see him, saving us an extra visit the following week. The day after that I received another phone call, this time from Dr Kate in Oncology, with pretty much the same sentiment! They needed to catch up with us and since we were going to be there anyway…. I figured we could do ENT, pop up to oncology, then head back down to Endocrine – I even made a joke about how even ENT couldn’t run late enough that we would be there for an hour an a half.
Remind me not to make jokes like that anymore, the universe seems to take it as a challenge.
We had all the appointments set and I had thought simply to keep Alex home from school, having to go and get him from parkholme and then go back to WCH is a trip of roughly an hour and a half, where going directly from our house is about 35 minutes. Then we received a notice from school, an excursion to see a play….. on Thursday morning. However, the play was in town and school is really good about allowing us to collect him while he’s on an excursion, so Phil hopped on the o-bahn and collected Alex after the play was done, and they had a fun time riding the bus back home. A bit of lunch, then off to the hospital! Grandma was awesome and picked Jenny up from school so both Phil and I were able to go to the ENT appointment, which I was glad of, given the point we are at with Alex’s hearing.
ENT were running a bit late, so we saw Megan the audiologist first as the doctors wanted to get an idea of what his hearing levels were like while he was wearing his hearing aid, all of the other audiograms were ‘unaided’ so they wanted to see what his hearing was like “normally”. Then we had to wait until both Dr Michael and the Otolaryngologist (that’s ear surgeon to you and me) Dr Sonja were both free. They had assessed Alex’s results and had come to the conclusion that it was not, as we had previously thought, the perforated ear drums which were causing Alex’s hearing problems. They certainly weren’t helping of course, but there was an overall downward trend in his audiograms which had started even before the grommets were put in. The reason for Alex’s continued hearing degradation is now being put down to the continuing effects of the radiation therapy, the gift that keeps on giving.
The continued hearing loss despite the eardrum perforations seems to point to the hairs in Alex’s cochlear being damaged by the radiation, the damage is permanent and now apparently progressive, so his hearing is only going to get worse. Dr Sonja has said the only viable pathway forward from here is to give Alex a cochlear implant.
This procedure is relatively straightforward, the only question mark is going to be Alex’s ability to heal from the required surgery as tissues damaged by radiation are slow to heal (as evidenced by his eardrums!)
Because nothing with Alex is ever easy, there are a few bumps in the road to navigate in getting an implant. The first is that the implant contains a magnet and Alex still has MRI scans. There is a cochlear implant which has the magnet inside a special casing so that it can spin during a scan, however the magnet itself will cause a blind spot on the scan. So becuase of this and because Alex has a shunt on his left side, only his right ear will recieve an implant.
There are two surgeries involved in a cochlear implant, the first is to remove most of the inner ear, 2 of the 3 bones and seal up the ear canal. Alex will still be able to stick his finger in his ear but the little hole won’t go anywhere 🙂
Once that has healed (6 – 8 weeks) then Dr Sonja will perform the surgery to insert the implant. This means Alex will have no hearing at all on the right side for 6 weeks or so, but then hopefully back to normal hearing thereafter.
Still reeling a little from this news we then headed off to Endocrine with all of 5 minutes to spare. The lovely Dr Jan saw us and gave us Alex’s test results from the Glucagon / Arginine test from a few weeks ago. In general terms if your results on this test are under 20 then you are considered to be growth hormone deficient, and all bar one of Alex’s were under 10. Unsurprising given his history, but armed with these results Dr Jan can now apply for Alex to be given the treatment. Since HGH can be used for a variety of purposes, only one of which is making you grow, and since Phil and I will be administering it at home, the hospital have to go through an application process to get government approval. The process takes roughly 2 weeks, so we will be back to WCH sooner rather than later to get this particular ball rolling.
Then we headed to oncology! Here at least was some positive news, oncology are preparing to officially hand us over to general medicine! We will now have a designated paediatrician to oversee both Alex and Jenny, a central person who can keep tabs on the kids and ensure they are hitting appropriate milestones and intervene if they aren’t, and someone who can liase with all the different departments so that all the treatments work in concert.
This is really awesome news, we have been scrambling for so long to beat the tumors and deal with the fallout from the chemo and radiotherapy that so many things have been just left by the way side in the fight to keep Alex with us. Now we have some breathing room and it’s time to address the more ‘minor’ issues like his general growth and development, and getting his hearing fixed, and seeing if he’s loosing his baby teeth at the right times etc etc.
We eventually did make it back home by about 6pm, with a small detour to pick up Jenny on the way – thanks again Grandma! the end of a very long day.
On Sunday we did something that I very much wanted to share with you all. We visited the Art Gallery of South Australia, and saw on display a piece of artwork that Alex had created. I don’t know if Alex is going to pursue a career in art when he’s older, but even if he doesn’t, he, and quite a few other SASVI students, can say that they have had their artwork on display in the Art Gallery of South Australia, which is a pretty big deal in my opinion!
It appears after our brief hiatus we are going to be plunged headfirst back into the world of frequent checkups and daily medicines, surgeries and recoveries, but we have made it this far and nothing’s going to stop us now!
After everything that’s happened I think we can take a lesson from Alex, grooving and singing along to Bobby McFerrin.
http://philtann.com/wp-content/uploads/2018/08/Alex_don’t_worry.mp4
Don’t worry. Be happy.
