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!