At the end of last year Alex had his grommets removed and his ears investigated, and a hole in each eardrum was discovered. 3 and a bit months on there has been some healing but not a great deal, his hearing is still very poor and Alex’s ENT doctor, Dr Michael, is of the opinion that the healing will take months, if it heals at all. There is a surgical option to fix eardrum holes, however it is not considered for children under 10, and even after that it’s on a case by case basis. We have been to see the lovely Kira at our local Australian Hearing office, and she has adjusted his hearing aids to match his current hearing loss, however, Alex can only wear his hearing aids if he does not have an ear infection. With gaping holes in both eardrums however, ear infections are currently just part of life.
One thing Dr Michael did say was that even if the holes healed, we would probably be right back where we started from, with Alex having fluid build up behind his ears. Because of the treatments he has had, Alex’s growth has been severely affected, he is currently about 25 cm shorter than ‘the average 7 year old boy’ and hasn’t really grown more than a cm or two in the last two years. Fluid behind the eardrum is a problem that children quite literally grow out of, and if he’s not growing Alex will still have issues. Dr Michael suggested we talk with Dr Ram our oncologist about getting Alex onto a growth hormone treatment regime, and this discussion has been organised for early April.
Friday March 10th was MRI day, and happily we were on the morning list. It does mean an early start – we have to be at WCH for 7am, but if all goes well we are done by early to mid afternoon. (we are also exceedingly unlikely to get kicked out of DOSA at 3pm and have to wait in the ward, which has happened on the last few afternoon visits!)
Alex needed a port flush and a blood test so amid all the admission paperwork we got that done, and organised for him to have some catch up immunisations done immediately post scan (while he was still partially under the influence of the anaesthetic) which was more complicated than I first realised, but was achieved in the end with no problems.
We were second on the list and Alex happily smelt the colours at 10am, and I headed off to the cafe for a snack 🙂
One of the things Alex hates is waking up from anaesthesia with something that wasn’t there when he went to sleep. The big one for him is the canula in the back of his hand. Phil and I always tell the nursing staff that they will need to take it out before he wakes up, or he will try and rip it out himself. Unfortunately, occasionally there is a medical reason they need to leave it in and invariably if this is the case, whoever is with him on the day will get called into recovery – usually parents wait in day surgery and their child is brought to them there.
This time around the canula was left in and I got a phone call to go through into recovery to try and help calm him down. When Alex comes out of the anaesthetic he’s initially not really with it – just aware enough to realise he’s got something in his hand he doesn’t want there and he essentially goes bananas. The longer it’s left in the worse he gets, to a point where even if it’s removed he’s so upset he just looks for something else to be upset about. This time when I got there he was extremely worked up, the canula was still in, the nursing staff wanted to leave it in and consequently were having to physically restrain him from pulling it out. I had to do some fast explaining but I convinced them to remove it, Alex, however, was very worked up and then decided that he wanted the sides of the bed down. When he couldn’t have that, he decided he wanted to get off the bed, and he is still small enough that he fits in between the side bars on the beds! There was me, two nurses and an orderly all trying to catch him and hoist him back up through the bars and back on to the bed, and he didn’t want to have a bar of it! I ended up sitting on the bed and hugging Alex to me to get him to stay on the bed so they could wheel us down the corridor to day surgery.
When we got there he had woken up enough that he was sort of listening to me, so I kept telling him he could have what he was after as long as he asked for it instead of just yelling. Shortly after that things were arranged to his satisfaction and I was able to sit him on my lap for a cuddle. Imogen who was the neurosurgery registrar on that day came into day surgery with a machine that looked like it had come straight off the set of star trek, which she used to reset Alex’s shunt. Usually a shunt reset would have been done in recovery, but her machine was acting up, and so was Alex, so we decided to try again in 10 minutes! With Alex calm and the machine working, the shunt reset was done in 2 minutes flat. Big cuddles, 300ml of milk and an hour later we were out of the hospital and on our way home.
Usually an MRI day blog would end here, with us promising another update in a few days once we had the results, but not today 🙂
We collected Jenny on our way home (thanks Grandma & Grandpa!) and an hour or so after we arrived home I had a phone call from the duty doctor at the WCH – Dana. She rang to check on Alex as the results from the blood test had shown very low blood sugars, not unexpected given he’d been fasting, but she wanted to check and make sure he was ok and had eaten and drunk post procedure, which he had. Five minutes after that phone call Dana rang back. This time to tell me not to worry, they thought the blood sugar result was actually a false positive and oh by the way, the preliminary scan results were back. This was somewhat of a surprise, usually results take 2 – 4 days, and given it was the Friday before a long weekend we weren’t expecting results until Wednesday!
The result she gave me was short and very very sweet – no new lesions and no change in the existing sites!
We will probably get the official and more comprehensive results on Tuesday and a call from Dr Ram to discuss what comes next, but if everything is fine then in all likelihood Alex’s scans will be pushed out to every 6 months instead of every 4, and he will probably have surgery to have his infuser port removed. The removal of his port will be the removal of a big safety blanket for us. While it hasn’t been used in nearly 2 years, the fact that it’s there and we can use it if we need it has given us an odd sense of security. When Alex contracted rotavirus in 2015, because of his lack of immunity – thankyou chemo – he was very dehydrated, dangerously so. The hospital staff were able to hook up a drip via his port, which was something he was used to, rather than having to put a canula in the back of his hand, which, as I’ve said, he’s NOT a fan of.
I don’t like throwing useful things away, I tend toward the ‘keeping it just in case’ frame of mind (something I’ve inherited from my Grancha according to Mum) and that ‘just in case’ has been why Alex has kept his port for so long – 4 years now. Alex finished chemo in July of 2013, but his port was left in ‘just in case’. We thought the chemo had worked, we only found it hadn’t 14 months after it had finished, and his port was needed for the next round of treatment.
So Alex having it removed will be a big deal, a declaration that he is no longer sick and will need no more treatment. After 4 and a bit years of living from MRI to MRI, with Doctors not able to say, “yes, he’s cured”, this will be a hard declaration to make. There’s always that little voice in the back of your mind saying
“what if it comes back again”.
Saying he won’t need his port again feels a little like tempting fate.
A cancer like leukaemia is an easier disease to declare, doctors can do a definitive test and say, “yes you have it” or “no you don’t”. Brain cancer is one which you just have to keep an eye on, the longer you go with no change the more confident you can be that you have probably beaten it, but there’s no definitive test, and no magic number of years for you to live post diagnosis and treatment that you can then confidently say “I’m cured”. I wish there was.
So for now we will keep living from MRI to MRI, but with more confidence, and no more ‘just in case’.