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.

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

                            

All we know is, he's called der starke (Day +209)

Hello Everybody! Apologies for the lack of updates lately. September was a very busy month with a lot of stuff happening. In the most part, Max has had a very good time of it since we last updated you all.  Over about a three week period during September, he really came ahead in leaps and bounds; he began to walk unassisted, his speech (and his ability to make demands) improved out of sight and he now wears big boy pants during the day i.e. no nappies. Over the past couple of weeks he has been laid low a bit by a cough and as we found out last Saturday, an enlarged liver (more on that later). The doctors don't seem too concerned by the latest turn of events and we think he is still ahead on where he was at at the start of September so hopefully this is just a little speed hump. 

So when we last left you, we had just discovered that Max's bone pain was caused by nothing more insidious than bone fractures, brought on by the poor strength of his bones. As we have mentioned in previous blogs, one of the side effects of the large doses of steroids he had been taking is that they reduce the amount of calcium the body is able to be absorbed, which can in turn can induce osteoporosis. Having narrowed down the cause of the hot spots, the decision was made to give Max an infusion of 

Bisphosphonate via Mr Hose, a relatively painless exercise, to help try and improve the ability of his bones to retain calcium. We noticed an almost immediate improvement in Max. Not only had Max had trouble walking and putting weight on his legs, almost every time we picked him up, he would let out a little yelp of pain if weight was put on his back or if he had to twist or turn. Within a few days of the infusion, these symptoms were gone. Needless to say, after all the bone scans, x-rays and daily visits from the nurse to give, as it turned out, unnecessary injections of antibiotics, this was a major relief. Depending on how he goes, he will most likely have another infusion down the track.

To help the fracture's in Max's spine recover, the doctors decided to prescribe Max a back brace. A couple of weeks after having it fitted, Bee and Max went in to hospital to pick it up. On trying to put it on Max, Bee discovered pretty quickly that it was not a very good fit for him. So we have given up on the idea of the brace until we have an appointment with the osteo surgeon this coming Tuesday.  

Blood counts, blood counts, blood counts. They have been over the shop lately. His red blood counts (Hb) are just below normal range - but stable. Somedays platelets are good and the white counts are down, other days its the other way around. It's worth mentioning that during September he recorded his highest platelet count ever: 177! Thats in the normal range (between 150 and 450). Considering that one of the main symptoms of the illness he had before the transplant was low platelets, this is some cause for celebration. They did go down to about 48 but are now up around 80. Haemoglobin was last counted at around 95 (normal is above 110). Neutraphils went down to a very low 0.3 so they decided to give Max a single injection of long acting GCSF. At last count they were back up to around 3.0.

As you may recall Max was fitted with a Hickman line prior to his transplant (around 7 months ago). Very simply, the Hickman line is like a hose or tap surgically inserted into a vein in the chest that saves having to use a needle to give medicine intravenously and to take blood samples. Max very quickly got used to having a couple plastic lines hanging from his chest, but with all the troubles he has had with his skin, it was very difficult to keep Mr Hose's protective covering ('raincoat') on. The covering not only helped keep the exit site clean it also helped prevent Mr Hose from being pulled out accidentally, which in Max's case was a real possibility, given that the cuff on the line that was supposed to bind with Max's skin had also come out. And as handy as the Hickman line is, it is also a source of potential infections. For all of these reasons, Bianca had been gently nagging the doctors during the last few visits if we could have Mr Hose removed. Two weeks ago, we got our wish, and with far less effort than it took to get installed, with a gentle tug from the nurse, Mr Hose was out! Bathing Max all of a sudden got so much easier as we don't have to worry about Mr Hose taking an unplanned swim. Bee has noticed that as Max is lowered in to the bath he still goes to hold his chest where Mr Hose used to sit. Mr Hose, you're gone but you wont be forgotten.

Pre Mr Hose removal

Post Mr Hose removal

Enjoying bath time

So that brings us up to the end of September. Not on Max's last regular appointment but the one before (a Tuesday), Max had an IVIG infusion as the tests of his immune function showed that it was not where it should be. This made sense as he had the sniffles and a bit of a cough. He spent a lot of the week taking it easy, watching a lot of Top Gear and generally not wanting to do a lot. His appetite was also diminished. On Friday morning, he was sitting quietly on the couch, having a bit of a coughing fit when he vomited up his breakfast and morning medicines. He did the same thing again on the Saturday morning, so after calling the ward to get their advice, we headed on in to emergency at the Childrens Hospital to get him checked out. Bee and I of course were fearing the worst and that Max would have to be readmitted to give them a chance to take a better look at him. Some tests were ran, and apart from a slightly enlarged liver, everything checked out ok. The suspicion was that it could be a bit of the GVHD manifesting itself in the liver so his dose of steroids was dramatically increased for the next few days to try and knock it on its head. Crisis over. Not only were we home by five, giving us time to get ready for the Challenge Ball that night (Challenge being the charity that does a lot of work on the ward and helped us out a lot during Max's time in hospital), we missed out on having the chance to watch any of the Grand Final! Win Win! By the way, we had a great night out at the Challenge Ball; thanks to those that came along and made it such a fun night out.  

Bee, Tommy G and Tim

Max has still been pretty flat this week, but we are hoping that he'll get over it pretty quickly.  

Cheers,

Timmo

Hi, Bee here..... I just need to add in a few thank-yous, to:

• Ephie, Manny and Conner for the very well received Top Gear gift.....some say it maybe tacky, but all we know is Max enjoyed it immensely!

• Paul S and family for the present for Max and the very generous gift for Tim and I....still waiting for that special time to indulge in it .... hopefully it's no too far away?!

• Yvonne, albeit belated, Max enjoyed the next transformer in the series.......and thank you to Linden for stopping by to drop it off

• The Martins for the great dinosaurs and snakes, much fun has been had!

• Aunty Jo for the special lantern and delicious meal

xxx

Hot Spots and Dry Botts (Day +171)

Time for another update I suspect! 

Non-medical stuff

We are still at home and things are quite stable. Max is very happy to be home and spends most of his days playing with his cars and watching re-runs of Top Gear. He can now pretty much recite word for word the majority of these DVD's and seems to become more and more excited each time he watches them. His car knowledge is astounding. Each time we venture onto the freeway on our trips into the hospital, Max gleefully points out to me the make and model of each car we pass. He then goes on to tell me whether or not he has a car like that at home....if he doesn't ..... his request for one is usually made very clear. I have a huge stash of cars at home and make sure one is packed in my bag ready to give him upon exiting the hospital. It is always a challenge I set for myself, to find a car similar to the one I have in my bag, and exclaim to him..."oh look at that car - you don't have one like that! If you are a good boy I might just be able to find one for you?" This usually gets him quite excited and I am always happy to be able to end the hospital day on a good note.

I have attempted to broaden his daily activities and try to drag him away from Jeremy, Richard, James and the Stig. A few days were spent successfully making puppets which he loved doing. Here are the finished products.

He is eating and drinking well - although very fussy with his food preferences - unless it involves pasta with butter, ham and cheese.  

Medical stuff

Max's white cell and neutrophil counts plummeted a couple of weeks ago (White cells - 1.5; Neutrophils - 0.4). This was very concerning as a neutrophil count less than 0.5 is considered to be severely neutropenic. The last time Max had counts that low was when he had just completed his course of high dose chemotherapy and everyone that came in contact with Max was required to be completely gowned up and masked. As a consequence I was instructed to start giving Max daily GCSF injections, as was done in hospital, which is a hormone that stimulates the production of his white blood cells. This injection is a very painful one and I hated having to do it. It is not the needle that is painful, but the actual hormone that has to be injected....slowly. After the short course of GCSF, Max's counts rose nicely......but at our last review they had started to decrease again. We are going in again on Friday and I am rather nervous about what the counts will be.....

Max has been having physio sessions each time we are in at the hospital. He does enjoy these sessions, and despite being in considerable pain at times, he is getting stonger and more determined each day.

Last week marked 5 weeks into the the six week course of IV antibiotics Max has been prescribed, due to his suspected osteomyelitis in his leg and spine. As Max has still been complaining of constant pain in these areas and is still unable to walk without assistance, Dr KT arranged for another bone scan to see what was going on. So last Friday, Max once again proved to be an absolute champion, lying so still for close to an hour whilst the huge machine sat millimeters from his face. All the staff were so impressed.

The results of the scan showed that the original 'hot' spots from the first bone scan were gone - great news! However, new 'hot' spots had appeared in different places - and there were more of them. Naturally, upon hearing this I had to compose myself in order to reluctantly ask the question....could it be cancer? The Dr replied that he was 99% sure it was not cancer, but instead either chronic recurrent multifocal osteomyelitis (CRMO) or avascular necrosis (AVN). Both horrible and very rare conditions. Very little is known about CRMO, and there is no known cause or cure......and AVN involves lack of blood supply to the tissues which causes bone death.....obviously this is not good and would require bone grafts or removal!

Consequently, as the initial diagnosis of osteomyelitis (due to a bacteria) was incorrect, the Dr's had to go back to the starting block to work out which one of these new possibilities was the cause of Max's pain. Another X-ray was arranged for Monday. I spent the weekend doing exactly what I shouldn't, and looked up all the nasty effects and prognosis of these two conditions. Honestly I was just preparing myself for the worst. I was in tears for most of the weekend and really not a pleasure to be around......sorry Tim!! xx 

To top off this shocking weekend, some douch-bag decided to side swipe my car whilst I was shopping, leaving me without a drivers mirror. After much mucking around (but thanks to a lovely witness to the crash) the police managed to track down the culprit and I am now waiting for a convenient time to get it fixed.

Monday arrived, an x-ray was performed, and to my absolute pleasure numerous fractures were identified in Max's spine. This means that potentially it was fractures - due to osteoporosis - creating the 'hot' spots and pain, not the other conditions. Crazy really, to be so pleased with your son having multiple spinal fractures, but that result is such a relief compared to the other illnesses we were potentially facing. Dr KT called us to inform us of this result and requested that we make an appointment this Friday to get Max fitted with a High Taylor back brace.  Naturally all the orthopaedic surgeons are away for two weeks, but at least we can get the ball rolling to get the brace sorted.

Oh yes, there is some imminent and exciting news coming soon to the Finch household................

....... bye bye nappies???

"it's for my graft versus toast" (Day +153)

Max, Bee and I are very much enjoying being back at home. Over the past three weeks, Max has settled quite comfortably back into suburban living. As he is not particularly mobile and is unable to walk without assistance he is spending most of his time confined to the couch. Not that there has been any argument from him as it gives him ample opportunity to indulge in his passion for watching Top Gear. It has also given Bee the chance to make space for all the goodies Max accumulated in hospital and to give the house a big spring clean. I took the past week off work to spend some time hanging out on the couch with Max (which I excel at) and helping Bee with the tidying up (not so much).

When we last spoke, Max was battling a suspected infection in his knee joint. Fortunately the prescribed antibiotics turned things around very quickly and within a few days Max was able to put weight on his right leg again. This was a massive relief as if left untreated we were informed that the long term prognosis for his leg could be particularly nasty. His blood counts over the past couple of weeks have been cause for some slight concern. His platelet count, which had got as high as 137 (normal range for a healthy person: 150 - 450), was last Monday tracked at 52. We were told that the count may have been compromised as the nurse had found clots in the line when taking the sample. On Friday, the platelet count was up to 66, which represented an increase and yet it is still a long way off his high. His neutraphil counts have also dropped to now just 0.4 so the doctor decided to put Max on a course of GCSF, requiring daily injections via an insuflon catheter, to boost the production of his white blood cells.  His Haemoglobin count is on the rise and was last recorded at 90 (normal range for a healthy child: 111 - 160). What does this all mean? The doctors don't seem to be too concerned by the fluctuating counts. We keep getting told that this is normal post transplant and that the important thing to focus on is that the new marrow is working, it will just take time for it to get used to living in a new body.

Max still complains of a sore back and we think that this is most likely the cause of him being extremely hesitant when exerting himself physically, whether it be walking, crawling or moving from one position on the couch to another. His back was X rayed a couple of weeks ago and it showed that there were signs of crushed vertebrae, most likely the result of a deterioration in his bones due to the medication he is on. One of the side effects of being on such a high sustained dose of steroids is that it can weaken the bones. Again the doctors do not seem to be too concerned by his back. His dose of steroids is gradually being decreased and he his now taking calcium tablets daily so our hope is that his back will eventually sort itself out. The doctor is still happy for him to have physio and has encouraged us that given the position of the damaged verterbrae that exercise should actually improve his condition.

Max is still on a veritable smorgasbord of medications and will be for some time to come. Each day at  8 am he has 14 different medications, at 2 pm its 4 and at 8 pm he has 13, all by mouth. By now, he's familiar with most of the names of the medications and we often like to play a game during medicine time of asking him what each medication is and what it is supposed to treat. It is very funny to hear him repeat the names of the medications back to us. Our favourite response is when we ask him what Cyclosporin is for, he gleefully replies "it's for my graft versus toast!". Hilarious! He is also required to have a daily dose of two different antibiotics which need to be administered intravenously via his Hickman line. Fortunately, we don't have to go into hospital for this as the nurse comes to us, thanks to the nursing at home service provided by the hospital.  We are still making the trek back to the Hospital two times a week for appointments with the doctor, tests and physio sessions, but we are hoping that this will soon be reduced to a weekly event.

In other news, a few weeks back when we were still in hospital, Bee entered Max into a competition to win one of ten Wiggles Video Game packages, including a Wiggles Singstar Game, a Playstation 2 and two microphones. For those who haven't touched a video game console since the Atari, a Singstar game allows you to turn your Playstation video game console into a karaoke machine. To enter the competition, we had to film Max singing a Wiggles song and submit the entry via Youtube (you can see the entry below).



Two weeks ago Bee got an email telling us that Max had won one of the ten prize packs! A couple of days later we received the prize in the mail and I couldn't hook it up fast enough. We have enjoyed many a wiggles karaoke session since. Max's favourite song would either be 'Shimmie Shimmie' or 'Lights Camera Action Wiggles' while Bee has proved herself to be a demon at 'Dorothy the Dinosaur'. I'm more of a traditionalist and favour 'Toot toot chugga chugga' or 'Fruit Salad'.

Again, thanks to all for the well wishes, cards and messages of support. We'll be back with another update in a couple of weeks.

Cheers,

Timmo

Small hiccup (Day +132)

Yes, we are home. Although it seems we are spending more time at the hospital than at home. We still have to attend hospital clinic visits for blood tests and Drs appointments at 8 am every Monday, Wednesday and Friday.

We left the hospital late Friday night with two full car loads of 'stuff'. Our house is not that big, so finding a place to put all the things we had accumulated over the past 5 months has been a huge exercise. I am still organizing where to put things. It hasn't really helped the matter by having to be at the hospital so often. This is where the 'hiccup' comes into play.....

We knew it would be difficult when we got home, as Max was very weak and could only walk with assistance. Little did I know how easy THAT would have been to manage. Max had been complaining of a sore knee and back for some time, but it was intermittent. On Saturday morning Max tried to climb up on the couch but he buckled under his own weight. Since that point he has been unable to put any weight on his right leg. He screams when ever he stands and does not like sitting for any length of time as he begins sobbing that his bottom/lower back is sore.

At our clinic appointment on Monday morning, I mentioned this to our Dr. She arranged to have an X-Ray done of which the results showed nothing. On Wednesday, having still not stood at all I demanded more tests be carried out. Having to carry around a 16kg child everywhere was not doing my back any favours - and it didn't help the matter that Tim was away for work for three days! A bone density scan was booked in for Friday. This procedure involved Max having to have some solution injected into 'Mr Hose', waiting 2 hours for the solution to get into his bones, then having a huge machine moving around him for 40 minutes (!) taking pictures, whilst being strapped onto a table so that he wouldn't move. I thought this was going to be an impossibility, but naturally, our absolute champion did brilliantly. He looked so much like Hannibal Lector - I had to laugh!

By 5pm the results were back, and showed abnormalities. As expected, the abnormalities showed up in his right knee and a few spots on his lower back. The frustrating thing is that this test does not tell us what is wrong, just that there is something wrong and where that something is. There were four possible explanations 1) a break or fracture, 2) a tumor, 3) metabolic disease, 4) an infection. They ruled out 1) and 2) because the X-Ray came back clear. 3) was ruled out as all bones would have been affected. That just left 4) an infection, but Max showed no other signs of being unwell - no temperature and all his inflammatory markers in his blood were pretty normal. Once again Max has stumped the medical specialists - (I wish he'd stop doing that!) Although, as Max is on so many immuno-suppressant drugs, it is possible that despite there being an infection, as his body can't fight it, nothing would necessarily show up on the blood tests anyway.

So, as a precaution they have just assumed it is an infection of some sort and we were told Max needed to start on a 6 week course of two strong antibiotics........and that these antibiotics need to be administered intravenously. At this point my heart sunk so low it nearly exited my rear! Noooooooo, not back in hospital for another 6 weeks!!!!!!!!!!

We were extremely fortunate that there were no beds available on the ward, and there were 8 people waiting for beds in the emergency department. For Max to be in the emergency department would have been disastrous (germs etc), let alone waiting there. No-one wanted us back in hospital, so our Dr tried to arrange whether Max could have certain antibiotics that could be either 1) administered over a 12 hour period and we could take home an infusion contraption with the antibiotics in a bag, or 2) antibiotics that could be pushed into 'Mr Hose' every 12 hours for a few days then once daily for 6 weeks. After a number of hours of phone calls to the orthopedic surgeon and other medical staff, our Dr made the call that given Max was not showing any signs of being unwell, we could have the 'second option': antibiotics that are pushed in the line every 12 hours (for three doses, then every 24 hours), rather than infused over 12 hours.

The first dose of antibiotics was given on Friday night at 9pm, we could then go home, but had to come in again on Saturday morning and then again that evening. It is now Sunday and we are now up to a once daily dose of the two antibiotics. We will go into the hospital at around 5 - 6 pm tonight for his dose. Tomorrow, being Monday, we are in at the hospital for our regular clinic bloods and Drs appointment at 8am, and may have to hang about till 5pm for the next antibiotics dose. There was talk of organizing a nurse to come out to our home to administer the daily antibiotics, but being the weekend nothing could be arranged till Monday. I sure hope this can be done as I don't think I could handle going into the hospital every day for 6 weeks.....I'll keep you posted....

An ultrasound is also scheduled for Monday, to see whether there is any fluid in his knee, so that a sample of this fluid can be syringed out to work out what infection Max has - if in fact it is an infection. If there is no fluid, and it is still suspected that it is an infection, Max will be required to have a bone biopsy taken. This is not ideal, as Max will be required to have another anesthetic and playing around with his knee bone which will take an extended time to heal (not to mention increased risks of more infections etc). If the antibiotics aren't seen to be working over the next week, another theory is that Max has early degeneration of his bones - not all that surprising given the extraordinarily high doses of steroids he has been on. We'll just have to wait and see........we are getting used to this whole patience thing.....but don't like it one bit!

Max is still a champion at taking his drugs (all 16 of them). A few of them have been reduced in quantity, but there is still many of them required three times a day - 8am, 2pm, 8pm.

So apart for all of that, it is great to be home (when we are actually home that is!) One awesome bit of news is that Max's last platelet count was 130k! That's nearly normal (150 - 400)! As you may recall Max's platelet counts were always around 12 - 20k. So, the main reason he was put through all this crap was to fix that issue. Looks like that is nearly 'fixed', but now we have a trillion other problems to get through in it's place!!!!! We've always been told that it will take 18 months or so before Max is considered 'cured' (for example his lymphocytes will only start to be within the normal range by 12-18 months). Hopefully by then we can start to revaccinate him (like babies are at birth, 3 months, 6 moths etc). And then we hope to be able to take him out into the big wide world again. We know we still have a long, long, long way to go. But little milestones like his platelets rising make it all worthwhile.

Thank you everyone for all your lovely messages over the last week. Sorry I haven't got back to you all, but as you can hopefully appreciate, between hospital trips and still getting used to being home I haven't had much time to do anything.

One, Two, Three.... Home! (Day +123)

Max is home! As I write, Max is curled up in his own bed watching, you guessed it, a Top Gear DVD (if you had the opportunity to ask, he would tell you that it is called 'Revved Up' and that it's the one that Marg gave him). Earlier this week word leaked out that Max might be heading home sooner rather than later and it was confirmed on Thursday by the doctors that Max was to be discharged on Friday. We got back home at about 11:00 PM on Friday after spending a good part of the day packing up both his room and our room at Ronald MacDonald house. Between all the toys, books, dvds and clothes that he has accumulated during his close to five month stay and Bee's purchases from the North Melbourne Opportunity Shop, there was a lot to move. We enjoyed the weekend slowly getting back into the groove of living in a house, unpacking and re familiarising ourselves with the joys of Foxtel (endless Top Gear, Wiggles, Dora and Football). We still have a long way to go in Max's journey towards full recovery. He will still need to visit the hospital two to three times a week for checkups and the same isolation rules will apply to home as they did in hospital (no visitors, clean diet, etc). We will continue to update the blog to let you know of Max's progress; Bee aims to write a more detailed update on the last week in Hospital (including his television debut!) and, as to what lies ahead for him.

 But for now, we're a very, very happy team.

 

Still on the up and up (Day +115)

What's been happening. It has been a rather stressful few weeks. The nurses and doctors have said repeatedly that they are stumped by all the complications that Max has had to endure, given the supposed very good cord blood match he received.  A few weeks back, Tim asked our main transplant Dr the hard question, as to whether there was any possibility that Max got the wrong cord blood. To our shock she uttered that the same question had crossed her mind and although extremely unlikely, they would be running some tests. One test was to see whether the donor blood Max received was actually the cord blood it was supposed to be (!), and another test (chimerism) was to determine how much of Max's new blood cells are his old blood cells vs the donors blood cells.

As you can imagine horrid thoughts crossed our minds many times and we were extremely anxious to find out the results. It would not have been uncommon to have a mixed or partial chimerism result where some of Max's old blood cells are present in addition to the new donor cells. This would not have been the best result (unless he wanted to make a living in crime or just confuse the hell out of CSI investigators), but people can live with two sets of DNA. Last week however, we learned that Max's blood cells are 100% donor! This is wonderful news! Although we are all still baffled as to the reason he has had such severe GVHD.

Speaking of which, Max's skin is looking great (thank goodness), his poos are now considered semi formed - which is very good (I do have photos, but I won't post for obvious reasons!), and he is still smiling and joking often. The sessions with the music and physiotherapists are now even more enjoyable.

Max remains on a huge number of drugs orally: blood pressure (x3), anti fungal/bacterial/viral (x5) and a few others. He is also currently on steriods, cyclosporin and MMF (all immune suppressants) through his IV pole. The reason they are given intravenously is because, due to his loose bowel motions, there was a high risk that the drugs were not getting adequately absorbed into his body. But because Max no longer has diarrhea, we are now starting to change these IV drugs to oral. Yesterday we started with the steroids. We'll see how this goes for a week or so, then start with the other ones. Once Max is no longer needing drugs and fluid replacement intravenously - theoretically, there is nothing keeping us in here!

Max is unbelievable with taking all his drugs, the nurses are continually amazed by this, stating they have never witnessed a child take their medicine so willingly and happily. Max knows pretty much all the drugs he is on, he even caught out one nurse when she forgot to bring one of them. "Where's my Aciclovir?" he questioned. She was completely blown away!