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!

Good times for a change (Day +83)

At last, things look like they are on the up. Max's skin has improved significantly with the rash all but receding and the new skin not showing any signs of peeling. Since we decided to stop the wet dressings last week, his mood and energy levels have also improved mightily with the smiles more frequent, the play more often and the demand for 'surprises' (presents) louder. He has even begun openly flirting with the female staff again, demanding hugs from his favourites. As if we needed another reason for wanting to get out of here, we might just have to add 'avoid harassment lawsuit' to the list.

Early this week, the oncology team finally decided to call in the gastroenterology team to get them to look into the poo situtation. The oncologists were concerned that, due to Max's recurring stomach pain and the unrelenting assault on our supply of nappies, the GVHD may also be present in Max's gastrointestinal tract. To find out one way or the other, Max had an endoscopy on Friday (after having fasted for 8 hours, which basically means that for 8 hours straight we had to say no to his demands for saladas and teddy bear biscuits; quite the achievement). The early word from the doctors is that although he looked a little tender, it didn't look too bad. We will get the official results from the biopsies sometime this week. Hopefully they'll suggest that gastro was largely to blame and that they won't have to add another anti rejection treatment to the mix.

Just to complicate the matter of the endoscopy, in the three days between meeting with the Gastroenterologist and when the endoscopy actually happened, Max's poo became noticeably more formed (from stinky vinegary thickshake to lightly mashed potato mixed with spinach). We partially credited this to the stopping of the naso-gastric feeds; bye bye Mr Nose for good we hope. At the time of the meeting, we didn't know when the endoscopy would happen but that Max would be placed on the emergency waiting list and that if his situation improved in the meantime that they could cancel it. As it was too soon to call whether he had truly improved, we went ahead with it. We were nearly to regret this decision as on Friday night his temperature spiked to 38.5 c indicating that he might have caught an infection on his trip to theatre. The temperature quickly returned to normal levels but then on Saturday afternoon, after a fun filled afternoon with Auntie Lou Lou, the diarrhoea returned. This time around, it was a lot less stinky, lacking that distinct rota aroma. On Saturday night we got the results from the blood cultures taken on Friday post procedure and, sure enough, they showed that Max indeed had an infection. We are hoping that the diarrhoea is simply a reaction to the antibiotics and that the infection, having responded to antibiotics in the test cultures, will be quickly sorted out.  We are reassured that apart from the brief jump in temperature, Max has over the weekend been symptom free of an infection.

On the other health front, the couple days R&R and a trip to the doctor's have done Bianca the world of good. She's got the colour back in her face, the twinkle as returned to her eye and her coping powers in dealing with an ill son and a cranky and irritable husband have returned nearly to full strength. She is amazing!

So what else has been happening? Here's a random list of Max facts to bring you up to speed:

* Max's is currently obsessed with the television show Top Gear
* His collection of matchbox / hot wheels cars exceeds 90
* His favourite matchbox cars at the moment are the white porsche convertible, the blue BMW, the 'Number 14' AMG Mercedes and 'Baby Jack's Maserati'
* We all enjoyed a family singalong of 'Big Red Boat' during the music therapist's visit the other day
* Max very much enjoyed chatting over Skype with Aunty Cath, Uncle Jimmy, Mawa and Mapa, all the way from Darwin.
* His current breakfast cereal of choice is Porridge
* He prefers his eggs poached
* At the suggestion he has started going for short rides on a tricycle.
* His weight is back up to 16kgs having dropped to 15 last week.

* Bee now drinks Soy Cappucinos

* Hawthorn is back in the 8

Thankyous:

* Caroline L for the Masterchef quality meal
* Amit, Alexandra, Miriam & Sophie for the very well considered gifts and lovely card.
* Grandpa Max for tidying up our garden and to Granny Pat for the divine biscuits.
* Jamie and Jillian for the amazing basket of goodies and meal.
* Peter & Sandra for the excellent books
* Auntie Lou Lou for the visit, the 'number 14' car and the lend of 'Baby Jacks Maserati'
* Auntie Jo & Uncle Andy for the meal.

Three Months in…..(Day+75)

I want to start out by thanking my wonderful husband for spending the past number of nights with Max. As I posted in the last update, I came down with a nasty cold last week, so Tim began doing the night shifts. Not only was my nose and head stuffed up, but my intestines had been brewing something unwanted for a few weeks as well. I thought by ignoring the situation, it would go away….not so. So, just to add to the already bad situation, I too was having stomach issues. I think the stress of everything finally caught up with me. 

It was such a vicious cycle - I felt so guilty being away from Max - but feeling rotten due to my own symptoms, I knew I was no good to anyone, yet this made me stressed, which exacerbated my symptoms, which kept me away from Max...... The last thing we needed was me being in hospital too! So my mother (love her!) decided to take charge arranging an appointment with my Dr. After seeing him, a small procedure was organised the following day for a little ‘look-see’ to discover that yes, my Crohn’s Disease has reared it’s ugly head…..crap! I have been put on increased medications myself, and I spent two nights in the comfort of “Club Relax” at my parents’ house where I was forced to do nothing! I am feeling better, but unfortunately it is not a situation that can be fixed quickly.    

As for Max: The large number of medical specialists looking after Max has now grown. The dermatology team came on board ordering a second skin biopsy to rule out whether Max’s new rash was actually something more sinister (TEN - Toxic Epidermal Necrolysis) in which the skin basically dies. Obviously this would have been horrid and honestly I didn't want to think about it. Thankfully, it turns out the biopsy result showed that his new rash was still consistent with GVHD. His blood pressure is also still a concern, so another med has been added. And another antibiotic has been prescribed…why not!  

Last week, in order to relieve the itching and burning of his rash, the Dr’s decided to try putting Max in ‘wet dressings’. This was done every four hours and involved lathering his body in cream, soaking cloth (similar to chux wipes) in cold water covering them over his arms and legs, then soaking bandages in the same cold solution and wrapping him up. Understandably Max HATED it and was extremely vocal! Thankfully, as of yesterday, this has been reduced to now just dressing his hands and forearms.   

As for the poo…..well, it’s still coming…..

We are hanging in here, and once again we must thank our awesome parents for helping us out by looking after Max so that Tim and I can have some 'get out of jail' free time xxxxx  

Thankyou to:

• All my magnificent friends who have called, texted and emailed. I feel so blessed to have you all in my life, I will get back to you....promise!

• Cards from Aunty Juda and Nana Shirley

•  Rach, Matt, Amelie and Harvey for the meal, wine, treats and gift

• Pip (Cus) for the meal and gifts for Max and Me!

• Angie for the book and beautiful card.

• Aunty Cheryle, Uncle Mick and family for the cool Jim Jams for Max!

Short but not so sweet update (Day +66)

Sorry for not upating the blog in a while but things have been hectic. This will just be a short update.
I came down with a nasty cold last Sunday, so I have tried to be with Max as little as possible. It has been really really tough, particularly as Max has taken a turn for the worse and just wants hugs from me. Not being able to do that is completely ripping my heart apart.

His skin is shocking, peeling again, extremely red and very itchy.
His bowels are also shocking...one nurse actually mentioned the word 'offensive' in her description of his motions! Whether or not this is a good thing, I just got word today that Max has tested positive for Rotavirus. At least there is a possible explaination for his reamergance of his terrible eruptions.....but of course this is not a good thing for Max with his low immunity etc......

To cap off a crap week...we have been booted out of our room T3 and moved to the other end of the ward in the old BMT unit (room S1). When I say old BMT unit, this is no understatement. It really is horrid. Our new room is smaller than the last one; there is no parent bed, just a fold out chair....and when flushed, the toilet flushes continuously. A plumber came in this morning with all his dirty tools (talk about trying to keep things hygenic) and attempted to fix it. Upon completion he said, "you just need to fiddle with it a bit and it will eventually work....you know this is an old building?".....NO SH#T SHERLOCK!! I am not in a happy place right now, so excuse me!

So from a potential discharge this week, we are now once again in here for who knows how long........

I do want to take this opportunity to thank everyone who has helped out with looking after Max while I have put myself in isolation at Ronald Mac House (Oma, Opa, Mawa, Mapa, Louie). You are all without a doubt lifesavers and we love you immensely.

Thankyou to

• Ames and Bruno for the fabulous meals and cakes
• Granny Pat for the card and the soup - I'll be having it tonight!
• Ian and Elsa for the lovely card
• Benjamin (and Mum and Dad) for the cool puppets!

Long time between motions (Day +59)

After a 30 hour gap between poos, we knew we were in for a special treat when Max finally came to breaking point. At 10am this morning it happened. Huge eruption and smelly scent would certainly be an understatement. But the good news - no after shocks! And then again at 5pm this evening. But again, just the one episode. Each time I was waiting, waiting for more.....but nothing! Bravo bowels! There is still a way to go, as they are by no means 'formed', but they haven't been 'water' for a few days now. As you may remember over the past month or so, when Max would usually do his 'business', there would be a number of further watery splodges to follow. It was not uncommon for me to be changing his nappies (or the blueys he would lie on) for up to an hour at a time.....not fun....so this is fantastic news.

In other news, Max now has a new found love of poached eggs (hence the eggy fragrance of his motions). He can't get enough of them. The diatitian recommended an increase in protein ie. meat and eggs, so she was wrapped that Max was eating them well. When I asked her how many would be too many, she said perhaps stop at 6. She also sent up some raw eggs so that I could go and poach them myself in the microwave....on demand!

This afternoon, Max began his ranting fury of demands for 'pooched' egg. So, as I always do upon leaving the room, I raised the side guards up on the bed, and put the nurse buzzer thing close by Max so that if in need he could press for the nurse. Upon my return with Max's egg a few minutes later, I found a nurse sitting on his bed massaging his hands with cream. She began laughing and explained that Max had used the buzzer and when she entered the room, Max held out both his hands and commanded her to "rub my hands with cream!" She said she couldn't refuse. I think this hospital adventure has created a spoilt little man out of our Max...fun times ahead!

Thankyous:

• Vanessa for the visit and the entertaining present for Max.

• Lou for the great presents for Max - the whopee toilet putty was especially entertaining,

• Karen for the grand effort in getting those fabulous "Neighbours" autographs,

.....and both of you for taking me out for a delicious dinner.

• John and Lynne for the chocolate treats.

• Peter and Sandra for a meal.

And special birthday hugs and kisses to Granny Pat. Tim, Max and I hope you had a wonderful day and we send you lots of love xxx