"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!

Happy Birthday Max Der Starke! (Day +106)

Just a short blog to let you all know Max had a fantastic time today celebrating his third birthday. We even managed to hold a little party, got to sing happy birthday and eat some ice cream cake! Thankyou for all your gifts, messages (especially the video messages!), love and support on this special day.



Tim

Slowly getting back on his feet (Day +104)

So where to begin? Not a lot has changed since we last updated the blog. Max's skin is still covered in the GVHD rash. For the most part, it has settled down but it is still quite raised and angry around his knee caps, hands and feet. His skin is still quite dry but Bee has done a brilliant job in maintaining his twice daily moisturising  regime so there's not been the wholesale shedding of skin that we've seen on past cycles of the rash. We would have hoped by now that the MFF would have settled the GVHD down but it hasn't turned out to be the case. This week we should find out from the Doctors what the next step is in his treatment for the GVHD. Stay tuned.

His poo is thankfully settling down again. For those of you who are interested in such things, he is back to one to two poos of a thick mashed potato consistency a day. This is quite a relief. The even better news is that Max's spirits continue to rise. Personality wise, he is back to cracking jokes, singing songs and flirting with the nurses. I don't think he's smiled so regulalry since he's been in hospital. Thanks to a lot of persistence from Bee and the physio, we have also had some success with getting him moving more and up and out of bed. We have borrowed a foam mat and each day have been getting Max to walk (with help) from his bed to the mat for a play session. It's fantastic to see him up and out of bed.

His happiness and improved mobility have certainly made it a lot easier to face the reality that he'll be spending his third birthday in hospital. We are looking forward to celebrating with him this special day on Tuesday. We regret that you will be unable to join us but we promise to make it up to you next year with the mother of all fourth birthday parties. We'll try and update the blog later on this week with photos of his big day.

Thankyous

Fi, Tim & Fletch - for the cars
Inge, Erich, Thomas & Klaus - for the cars
Dave - for the big car
Deb, David & Natalia - for Max's early birthday gifts
Julia, Brian & Family - for the books & DVD
Toni & Knut - for the treasure chest
Heidi, Trav, Liv & Chris - for the clock and book.
Amy & Bruno - for the book & cake
Gramps & Poppi - for the gardening

No news...is just no news (Day +94)

Sorry haven't blogged in so long....not enough time in the day, and on those occasions where there is time we are generally too bl##dy exhausted to think about what to write. I'm going to follow in Tim's footsteps and 'dot-point' the major bits.

On the weekend (12th - 14th June) Max's poo situation hit another low - the worst it had been in a month or so. Max was having severe cramps prior to each motion which is still terribly difficult to watch. I really don't want to jinx things but since last night, the frequency and consistency are looking more normal (whatever that is?!).

His skin also decided to run another course of the extreme rash, itchiness and peeling phases. Yesterday it was decided by the Doc's to once again try adding the other powerful anti-rejection drug Mycophenolate mofetil (MMF) to the mix. As you may recall this was first tried in mid May, but was stopped a day after as Max's rash went ballistic, and they couldn't rule out whether the drug caused the rash, or whether it was just the cycle of the GVHD. This time around, Max's rash had already started to flare, so we are giving it another go. Two days in, his skin is still bad, but we've been told the MMF won't start having an effect for a week or so......we're holding onto our hats. Max does still have terrible stomach cramps - ironically we have been told that a major side affect of the MMF is gastrointestinal problems (cramping and diarrhoea....oh dear!). Needless to say we need to keep a close eye on it.

Max's blood pressure has also been an issue over the last couple of months (all due to the ridiculously large number and volume of meds he is required to take). The renal team are attempting to reduce the number (4) and quantity of these drugs. Depending on today's blood pressure readings, he may only be on three from tomorrow.

Max is truly a star. Despite his obvious pain, poos and skin discomfort, this week he has been the most talkative and chirpy since this whole process began back in February. Tim believes that it is Max's way of telling us that he is alright and for us not to worry. From my point of view, my mood is certainly dependant on his - and each time he whispers to me that he 'loves me .....this much....(whilst stretching out his arms to full length), I am more and more confident that he is doing ok!

The one thing we really need to work on is his walking. Currently....he can't! His legs are so wasted away that even standing for a few seconds is an enormous effort. We are working on it, and the physio visits everyday to make sure we are working on it. I do miss those beautiful chunky muscle legs that Max had...I know they will be back.

So much for my 'dot-point' summary......

Thanks to:

• Max, Rosi and Family for the wonderful Mobil Play toy for Max (it finally arrived after 3 months!!!)

• Bec, Dave and Benji for the early b'day gift for Max

• Trisha and Fam for the gorgeous gift

• Jamie and Jill for the scrumptious munchie hamper and gift

• Marg and John for the Top Gear DVD and book

• Meals from Aunty Cheryle and Aunty Jo

......

• Thank you also for everybody's wishes, cards and gifts for Tim's and my birthday(s) - (Flip that groovy box now houses all Max's cars!!) and a special thanks to Aunty Jo for looking after Max while Tim, myself and our parents went out to dinner all together...what a novelty!