Please Sir, I want some more.....(Day +241)

Ok, I know....its been a while.....but writing these updates are hard work!


As mentioned in our last update, so about a month ago now (!), Max was feeling quite poor (vomiting, no appetite, and consequently had a dramatic weight loss)....we learned two weeks ago the possible reason for this was that (along with his liver issues) Max had somehow contracted the 'parainfluenza virus'. This was a tad frightening as we were told that although this virus is not so bad for the 'regular' folk - for transplant patients it's potentially fatal. Although Dr KT didn't seem overly concerned, Max was 'banned' from the 'isolation room' that is our waiting room - and instead were relegated to another room - until Max is deemed clear of the virus. To ease his symptoms he was prescribed some ventilin which seemed to work quite well, in fact Max totally loved using the whole 'puffer and spacer' apparatus! There's not much else you can do with viruses as antibiotics don't do squat! How Max managed to contract this virus has stumped us, as we are ever so vigilant about keeping Max away from potential germs (ie no visitors into the home) and those of us he can see, are instructed by 'dictator Bee' to sanitize themselves before approaching the Master Maxwell! ..... Good news on Tuesday however, Max got the 'negative' result....so he is officially cleara of the para!


I'm not sure if I had mentioned this in past updates, but Dr KT was always intrigued that Max's hair was not really growing back after the chemo. She prepared us for the strong possibility that it may not grow back at all due to his severe and chronic skin GVHD. This was naturally quite difficult to hear and it was very difficult for me to see other chemo patients who had recieved their treatment well after Max, but displayed full luscious heads of hair. I tried to remain positive and gave him many scalp massages to stimulate those follicules!! - but for a while Tim and I were resigned to the fact that Max may just be bald kid...teenager....adult - hey, at least he's a boy and can get away with being bald. But, I'm relieved to say that Max's hair is really starting to grow back nicely now.....

As Max not longer has Mr Hose (his Hickman line) - he has to be jabbed, poked and prodded in his arm every week to get around 5 viles of blood for his weekly blood tests. Naturally he struggles and complains a bit, but considering he never has any numbing gel applied, I think he is one completely amazing tough cookie!! Some of you may be thinking "why doesn't he just have finger pricks?" - well, this was attempted on the first time we had to get bloods done (after the removal of Mr Hose), however it was unsuccessful due to the large volume of blood that is required, and due to the fact that his poor little fingers are so sensitive due to his skin GVHD. 


Speaking of bloods......Max's latest blood results are wonderful: His White cell and Neutrophil counts are "fine" - according to the Doc....I interpret this as them being within the normal range?! But the exciting ones are the Haemoglobin and Platelets......
Hb is 120 (normal 110 - 140), first time it has been in the normal range since February!......and 
Plts are 236!!!!! (normal 150 - 400).....Jeeeepers! 
Dr KT was rather happy with those numbers, and reported: "Well, I'm glad to see his bone marrow had decided to kick in now!!!"


Although these results are fantastic, Max's immunity is still considered ineffective. Without getting too technical, Max's new bone marrow needs to start producing B-cells and T-cells, and according to Dr KT "Max doesn't have a B- or T-cell to his name"!! Looks like it'll be the full 18 months post transplant, at least, until we can venture out of our isolation 'bubble'.


Another lot of frustrating news is that Max still has significantly high liver function test results. A new medication has been introduced (...yes ANOTHER!)...and an increase in his MMF and cyclosporin (two of his immunosuppressant medications) to help calm it down. If this doesn't seem to be doing the trick, a liver biopsy is on the agenda to determine whether Max has liver GVHD....our Max doesn't do things by halves. If he does have GVHD of the liver, not only will it mean he has successfully performed the GVHD trifecta, but it will also mean increasing his steroids again (boo!).


As many of you may be aware, Max has had an alternating squint (stabismus) since birth. He used to go for regular check ups at the ophthalmologist to make sure that his sight was not deteriorating, and reports were always good, showing that both eyes were working well, albeit independently. The fear is that if one eye was to be used more predominantly than the other, the brain would in effect 'switch off' the eye that wasn't being used. This would in turn make Max blind in that eye. Tim and I have noticed recently that Max is beginning to favour his right eye, I have brought this up with Dr KT, and an appointment has been scheduled for Nov 30th. We have always known that surgery (to realign the nerves to the eyes) is the only thing that will fix Max's squint, however, as with all surgeries comes risks, the major one being bleeding into the eye which would cause blindness. As Max's platelet counts were always extremely low, the risks of such bleeding were very real - so, the surgery was not advised until this issue was resolved. Now that Max does have platelets.....we shall see?.....(ha, pardon the pun!)


On a good note, Max's appetite has resurfaced....majorly! His typical daily menu consists of:
Breakfast: light, fluffy scrambles eggs on buttered toast (crusts removed please!) with freshly squeezed orange juice,
Lunch: either a cheese toastie with a thin smear of guacamole on top! or, a mix of chicken, mayonnaise, sour cream and celery on an open sandwich (once again no crusts!) and,
Dinner: Gnocchi with lots and lots of butter or sausages with mashed potato and pumpkin...and tomato sauce!
Snacks: Rice crackers and Strawberries!!!!!!! 
As he is still on a 'clean diet' I must prepare fresh meals and cooled boiled water in sterile bottles for him to drink....so looking forward for that to end.....it's like having a new born again....just with added 'attitude'!

Breakfast

Dinner - option #2

Tim had the week off last week (as he has been away all this week), so we made the most of the family time by taking Max to the park, as no one was there it was safe for us to play! We then ventured into a small 'collectors' shop on the way home....Max's eyes nearly fell out, he could hardly contain himself......cars everywhere!! So, of course we HAD to buy him one. 
Max had an absolute ball of a time.....only problem is he now wants to go to the park and the shop ALL the time. By next week, hopefully one of these requests won't be too much of an issue, as 'Make-a-Wish' has granted Max his wish for a CUBBIE with sandpit and slide! Will be sure to post some pictures......

Today we had our first official...'through the window' visitors.....Max's MG girlfriend(s!)...I thought it could be a bit of a tease....and it was terribly difficult for me not to be allowed to let them in....but Max thought it was fabulous!

So till our next update (probably in another month?!),  it's goodnight to you all xxx