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

The return of 'Mr Nose' (Day +54)

It's Saturday night. Tim and Max are happily watching the cricket and "Grandpa in my Pocket" respectively, and I am stuffing my face with Chicos not particularly interested in watching either of those options. So, I thought it a good opportunity to post an update.

It had been recommended for some time that Max be allowed to eat - but preferably small amounts often through the day. Thursday this week was the toughest day for me so far. It had been a rough night with constant demands for food starting from 4am! Every few minutes Max would scream for either some sort of biscuit, noodles with tomato sauce, banana with honey, or a combination. It is an incredibly draining exercise to have to continually distract a nearly 3 year old from food - who is starving and on steroids (which increase appetite and rage!). I was trying to withhold giving Max to much food at once, as I knew full well that too much food would lead to stomach cramps, which would then lead to hours of diarrhoea. Neither option is a pleasant one: a) go insane with listening to shreaking food demands, or b) spend hours upon hours sitting at the end of Max's bed catching and cleaning up 'crap'. But as you may be able to imagine having to deal with both of these I was close to breaking point. We had passed the 3 week mark of being back in hospital, Max was the same (or worse), and no-one is able to give us any indication of how long it will take to improve. The standard response is "Patience, this just takes time and every one is different".
To top off my already unstable state, the dietitan and Dr's came in the room in the late morning and said that they wanted to try nasal gastic feeds......that meant having to put in another "Mr Nose". As this is a very unpleasant experience, a happy drug was required (Midazolam). But before this could be administered, Max was required to have 'nil by mouth' for 2 hours.....can you imagine! It was at this point I began to cry. It had all got too much.

Our Dr M was unbelievable, he said "I have some spare time, go out and grab a cup of tea, I'll stay with Max". I took him up on his offer and hoped to find somewhere to be alone for a while.....but do you think I could. I went to the bathroom, of course three people followed me (as there was only one toilet there I couldn't really stay; I went to a usually quiet parent's retreat room - a number of people were in there having some sort of party. There really wasn't anywhere else to go, so as I was feeling a little better at that point, I decided I'd just go back to our room and deal with what I had to. On my way back however, a random Mother - who I had never seen before - stopped me in the corridor, grabbed me by the shoulders and said "Are you ok? It does get better, look!" and pointed to her son, whom I'm assuming was either in remission or cured of cancer.....and there I went again. The genuine care and support of everyone on level 6 oncology is beyond words. I snuck into another small parents room only to be followed by Dr M who proceeded to say what a great job I (we) were doing "much better than many others" and although our little boy wasn't himself at the moment, he will be back. I think that has been the hardest thing this time around, Max really hasn't been himself, and that has been so difficult to deal with. I also had a visit from a wonderful guy 'Mika' from Challenge who must have spotted me with my beautifully red, blotchy face, and asked if there was anything that he could do for me. Within an hour, he had arranged for me a voucher for a 1 hour full body massage!!!

My parents (Oma and Opa) came in at around 3pm on Thursday at which time I headed over to our room at Ronald Mc House, had a shower and put myself to bed. I stayed there till the next morning! It did me good - so thank you Mum and Dad and to each and everyone of you that helped me through that horrible day. Thankyou also to Mawa for looking after Max today so that Tim and I could venture out into the world on such a beautiful day!

Anyway this post is getting too long and I'm tiered, so I'll keep it short from now. Max now has "Mr Nose" again. His poos have been 'different', at times more formed with the occasional looser session - just to keep us interested. It really is like a lottery ticket each time I change his nappy "What'll it be today? Sloppy (losing ticket) or formed (winning ticket!)"...oh the suspense!!! His skin is better overall, so that's good. Oh yes, and we have definitely been getting more smiles....which is great!

I'm now very tiered and feeling quite sick as I've finished off that pack of Chicos, so I'm signing off with the
hope of continued improvement in Max's skin, bowels and spirits......

Thankyou to Baby Jack ( and his parents!) for his special present for Max xx

Teamwork! (Day +51)

Well it's been a while since we updated the blog and really, not a lot has changed. Max is still troubled by the GVHD of the skin and gut. Depending on the light or our spirits, sometimes it looks like it's receding, other times it looks like it is getting angrier. He's back on the intravenous feeds so hopefully this will give his belly a bit of a rest and fatten him up. That said, he has seemed a little chirpier and more talkative over the past couple of days so we are praying that these are signs that he's slowly on the mend.

As you all know, Max can give a high five just like the best of them. After sharing a high five with him the other evening, Max randomly exclaimed 'Teamwork'! Wow, what a touching sentiment, I thought. Max then began to talk about one of his favourite shows 'Grandpa in my pocket', which as the title suggests revolves around the hijinks of a boy called Jason and his Grandpa who on putting on a magical shrinking cap shrinks to the size of a star wars figurine and gets in to all sorts of hijinks. Max then requested that we watch 'Grandpa in my pocket' on my computer. So I looked it up on the internet and came across the website for the show, which fortunately featured some videos. As one of the episodes came to a close, Grandpa gave Jason a high five and then said 'Teamwork!'. Wow, I was dumbstruck. As it turns out Max was quoting from a TV show he hadn't watched for at least two months!

Thankyous:

• Kate, Tom & Isobel for the box of goodies. They were appreciated by all.
• Pip for taking Bee out to dinner
• Judith for another beautiful card. You too are in our thoughts
• Claire for the lend of the DVDs. All winners!
• Friends from Rossbourne for a lovely card full of good wishes
• And to Oma, Opa, Mawa and Mapa for their continued love, support and presents!

Cheers,

Tim

Round Two, two weeks in......(Day +47)

I had a rough night on Thursday.....but surprise surprise, not due to the act of Max deficating.

1am - Max wet through, drenching his clothes and requiring a bed sheet change (He had been on increased IV fluids from 6pm - 12am due to his 'back door' fluid losses, so, although I was aware that he would be weeing a lot, I stupidly didn't think to check his nappy.
2am - same as above.....I know!.....I should have used the Sumo sized nappies.
3am - nurses were checking his blood pressure, but were having difficulty getting a good reading..it was extremely high. He also had rather low pulse rate (around 50bpm).
4am - I heard a male voice in the room trying to wake Max up. It was the night Dr who had been asked by the nurses to check on Max due to his high blood pressure and low heart rate readings. He wanted to check on Max to make sure he could be woken up - once awake he decided to shine bright lights in Max's eyes etc etc....all seemed ok....so I went back to sleep.....
4.30am - An ECG had been ordered. Once again Max had to be woken to stick a number of probes to his chest. Naturally the machine wasn't working so it had to be redone three times. This took around 45 minutes. On inspection by the Dr, everything looked fine.
5.30am - regular lot of bloods were taken from 'Mr Hose'
6am - Max wanted me to get into bed with him and rub his tummy.....we both fell asleep until 8am at which time Max wanted his breakfast....so the day began........

Over the last few weeks Max has been progressively loosing more and more weight. He has lost around 20% of his total body weight through a combination of diarrhoea and lack of movement - his previously beautiful muscular legs have dwindled down to little chicken legs with nobbly knees. It is really sad to see him like this, he doesn't want to move from his bed - it's a stuggle to even get him sitting up in bed for too long. He has not been himself for a number of weeks now, hasn't smiled in a long time - his spark has gone. I'm sure (from my own Crohn's experience!) that his continual bowel actions, stomach cramps and pain has worn him out!

On the dietitians advise, this morning I thought I'd try giving Max a lactose-free protien chocolate shake in the hope that this would build up his strength and weight.............not a good idea...............it certainly came out quicker than it went in!......no chocolate mousse references for this episode....more like a burst water mains!

As a result, TPN (intravenous feeds) is on the agenda to start tomorrow or Monday. Yes, this means we will be in hospital for a while more. Surprisingly, Tim and I are happy that the TPN is actually happening. It's quite clear that Max is not absorbing any of the nutrients of the food he is eating, so at least this way the sustainance he needs will be delivered straight into his veins and give his gut a complete rest.

That's all the big news for now.......we are hanging in there.....we just want our cheeky little boy back and will do whatever we need to do so this happens!

Thank you to:

• Gramps and Pop for tidying up our, I'm certain, weed infested garden.
• Gramps and Granny Pat for the Thomas trains and track - such a great choice!!
• Aunty Jo, Granny Pat, Aunty Juda, Aunty Jill for the beautiful PJ's for me and the Dora books for Max.
• Cus for the wonderful care package for Tim and I (it will last us a while), and the box of goodies for Max, especially the 'Hawthorn' car which he has decided to sleep with for the past couple of nights!