Riding in a Big Red Car (Day +273)

Hello everybody! Seasons greetings to you all. Since our last update, there has been a lot going on in the world of Max. There has been a few lows and a couple of very big highs over the last month. The best news we have is that we are confident of being able to celebrate a happy Christmas together and at home.

Max der Starke

Max’s skin does not seem to be improving as quickly as we would like. As you may recall, one of the complications of the transplant is that Max has been afflicted by Graft Versus Host disease (GVHD) of the skin, the symptoms of GVHD being constant itchiness, flakiness and redness. Although we are fully covering him in dermeeze cream twice a day, his skin continues to dry out very quickly. This pretty much means he is continuously shedding dry skin; it’s almost like he is perpetually recovering from sunburn. We mentioned it again to Dr KT and she didn’t seem to be too concerned. Like most of the complications Max has experienced, she assured us that it’s really just a matter of time before his new marrow and his skin put aside their differences and start playing for the same team, so to speak. Depending on how his skin GVHD goes in the new year, they may organise for Max to undergo ‘photopherisis’ - a therapy where they withdraw Max’s blood, expose it to ultraviolet light and then put it back into him. It’s a newish type of treatment for GVHD and the only machine in Melbourne that performs it is designed for adults (at the Peter MacCallum Cancer Centre) so they would have to modify it to suit Max. We’ll keep you informed.

At the end of November we finally had the appointment with the Opthamalogists to discuss Max’s squint. As we mentioned in the last blog, Max has started to obviously favour one eye, and our fear was that this might lead to his brain permanently ignoring the other eye. We first visited one opthamologist who did some basic eye chart tests and then put a few drops in Max’s eyes to dilate the pupils so that they could get a really good look. Max wasn’t too happy about having the drops put in but he settled down pretty quickly after having a little bit of a tantrum. After waiting for half an hour for the effect of the drops to kick in, we returned to the eye clinic and met with another opthamologist who with a series of tools had a really good look inside Max’s eyes. The good news is that there is no rush to have the corrective surgery performed for his squint as the Doctor was relatively happy with the eyesight in the less frequently used eye. The bad news is that, due to the high levels of steroids Max was given to treat his GVHD, he has developed cataracts in both of his eyes. According to the doctor, there is again no rush to do anything about the cataracts with the stage that they are at, and their preference is always to delay surgery if possible until at least five or six years of age when the eye is more fully formed. Max will continue to have check ups with the opthamologist every three months to monitor the condition. Coincidentally, the day we visited the eye clinic was the day they were taking delivery of a new diagnostic machine that allowed them to take very high definition photos of a patient’s eyes. The opthamologist asked if Max would like to see the new machine and if he wanted to, he could have his picture taken with it. Max took to the machine like a professional and had a room of about 8 medical staff enthralled as he sidled up to the machine and patiently waited to have photos taken of his eyes.

Eye Camera

A while back, Bianca noticed Max had a large bruise  about the size of a 50 cent piece on the side of his rib cage. At the centre of the bruise was a small hard lump. Over time the bruise died down but the lump remained. Dr KT didn’t seem to concerned by it, but after it hadn’t disappeared after a couple of weeks, as it should have if it had been a run of the mill bump, she decided to organise for an ultrasound . We had the ultrasound last week, but this didn’t seem to shed any light on the situation. The ultrasound person assured Bianca that it is in all probability not cancer, but that it’s also something they cannot immediately explain. They will continue to keep an eye on it and may end up surgically removing it and performing a biopsy on it.  Thankfully it seems to be getting smaller over time, not larger.

Well that’s probably all the bad / disconcerting stuff out of the way. In the good news column, last week’s blood tests showed that pretty much all his blood counts, apart from the lymphocyte counts which will only come up once he’s off immuno-suppressants, are at normal levels. As in ‘normal healthy person’ normal. I nearly fell off my chair when Dr KT said that his platelet count was at 356! 356! His liver also seems to be settling down which is a big relief; for a while there we were fearing that Max was going to go three for three (skin, gastrointestinal, liver) with the GVHD. In terms of medications, we’ve been able to stop the nose spray and reduce the blood pressure meds (the last one to wean is the amlodepine). We’re hoping to drop the amlodepine when the packet runs out. Max is back on ‘Nilstat’ mouth drops (3x/day and some Kenalog mouth paste) after having a couple of nasty ulcers appear a while back and he’s having a new medicine called ‘Ursofalk’ for his liver, which seems to be doing its job. Max is still on a truck load of medicines, and can recite them all...

Morning Medicines

Afternoon Medicines

Evening Medicines

We’re hoping to find out on this Tuesday’s appointment with Dr KT whether Max’s appointments can be reduced to fortnightly. We also might find out if we can start to relax the conditions of Max’s isolation with adults from people other than me, Bee, Oma, Opa, Mawa and Mapa. Fingers crossed.

In the really good news column, Max was fortunate enough to have his wish for a cubby house granted by those fantastic folks at the Make a Wish foundation. And what a cubby it is! A couple of tradies came around on a Thursday morning and knocked up what is a massive cubby in about three hours (that translates as 18 ‘dad after a couple of beverages on christmas eve’ hours).

Mansion Cubby

Painfully for Max, we weren’t really allowed to acknowledge it’s existence until the official handover ceremony on the Sunday with the Make a Wish people although there is a rumour going around that Max may have checked out the sandpit that afternoon.

Sandpit

On the Sunday, we had a knock on the door from Terry and Darian from the Make a Wish foundation. Not only did they bring a cake for morning tea and a toy construction set for Max,  they also mentioned that they had another surprise up their sleeves. A couple of minutes later, what would happen to rock up in front of our house? Why, it was a Ferrari 599! We don’t see too many Italian sports cars in our street, so we figured something must have been up. In organising the cubby for Max, the Make a Wish people had learnt of his love of all things cars. They put the word out and luckily for Max, a lovely gentleman by the name of Joe came forward and offered to take Max for a spin in his brand new Ferrari. We abandoned all common sense and decided that it would be ok for Max to have a ride sitting on my knee in the passenger seat. Max was a bit slow to get into it, but by the time we had rounded the block and were back home he was already asking to go for another ride so Joe happily obliged him. What an experience for Max! Joe even kindly allowed us to take photos and videos of us with the car.

After the ride and photos, Joe and his wife took off, with the rest of us retiring to the deck for cake and tea. A lovely morning was had by all. Thanks once again to the Make a WIsh foundation for the cubby house and the experience of driving in a Ferrari.

Thankyous:

Elle for the beautiful box of sweet treats

Aunty Jude for the lovely cards, and
Mawa and Mapa for taking us to see Blondie and to Opa and Oma for looking after Max.

At Blondie

So that rounds up another blog. We’ll try and update it in early January. Thanks for reading and we wish you and your families a very merry and safe christmas.