On the road to recovery.... (Day +312)

Happy New Year!

Overall it has been a good start to the year...two big positive events occurred since our last update:

Positive One) Restrictions have been lifted on healthy adults, although Max would love to be able to see people his own size and age; he is still loving the fact that 'other' adults can now enter our home and play with him.....as am I!! Max was always such a social being and loved mixing and meeting people.....this is once again strongly evident!

Christmas was lovely albeit very quiet, and Max enjoyed receiving all the attention from his parents and grandparents (Oma, Opa, Mawa and Mapa). Max’s other Aunts and Uncles dropped by to say “Ho Ho Ho”, but a special mention must go out to Max’s cousin Jack. Although technically Max is not yet allowed to mix with children, shhhhh....we made an exception on this occasion, given that we knew that Jack was free of illness (and having a nurse as his mother, I knew she would be able to spot any signs in an instant!). Max had not been in contact with another child for over 10 months, so understandably he was a little cautious at first, but after a while he was enjoying playing with his cousin immensely….even telling him what to do (and what not to do!)!

Since this time we have also made another exception.....again shhhhh....for Max to see his other 4 cousins (all in one family....and all under four years of age....Oi !) Again, Max had a blast!!!

Positive Two) No more ‘clean/sterile diet’! Those in the know may be wondering why Max has been on the ‘clean diet’ for so long? A ‘clean diet’ is usually only required for the first +100 days post transplant, as during this time BMT patients have severely compromised immune systems which could not fight off potentially harmful bacteria that naturally occurs in most food. Because Max acquired Graft vs Host disease (GVHD) post transplant, he has had to take a large number of immunosuppressive medications to keep the GVHD under control, and has therefore been required to remain on the ‘clean diet’ for all this time. Although Max is still taking these immune suppression drugs, on my request, Dr KT decided that it would be ok to relax his diet somewhat to include other food. This means Max doesn’t have to eat food which has only been either freshly prepared, or which has come from individually sealed packets. It also means he can have Maccas!...a great way to stack on the fat…more on that later. Being off a ‘clean diet’ also means that we are no longer required to boil water for Max to drink, it can now come straight from the tap! Ahhhh the luxury.....

As mentioned above, it was on my request that Max be able to eat foods other than those acceptable for a ‘clean diet’. Up until very recently, Max's eating has been a serious issue. He was continuing to dramatically loose weight - despite our attempts to lather the fat on his foods wherever possible! The Drs and dietician warned us that if Max’s weight was still dropping after Christmas we were going to have to start specialized feeds, as a way of forcing the weight back on. This meant having to reinsert either a NG tube (aka Mr Nose) or a port directly into his stomach. As you can imagine, I was extremely nervous and upset about this prospect.

Relieved that Max could now eat a wider range of foods (with the lack of ‘clean diet’ restrictions), I swung into party food mode – there was chips, dips, and all things harmful to the waistline and cholesterol level! Things were going 'great guns' until a few Sunday nights ago (and of all times, the night before we were going away to the beach), whilst Max was eating a chilli rissole and some ‘Easy Mac’ (packet Macaroni and cheese), he began complaining of a sore mouth and stomach….. Within 5 minutes Max’s lips had swollen up to three times their normal size. We didn’t muck around in case his throat started to swell up also, so we headed straight to the emergency department of the RCH. By the time we arrived, his lips had started to deflate, but we were still rushed into an isolation cubicle. The Dr assumed that Max must have an allergy of some sort to something that was in the ‘Easy Mac’ meal; so after a few hours we were sent home with an appointment slip to see the immunologist in a few weeks time. We were told to just “steer clear of eating ‘Easy Mac’, as if Max were to have another episode, it would certainly be much more severe”. This is due to the fact that, depending on the type of allergy, after the first reaction the body ramps up the production of the antibodies, increasing the risk of a more severe reaction the second time around. 

With my detective hat on, I thought the trigger of this mysterious lip flaring incident could be put down to either MSG ‘food enhancer 621’ or the natural food colouring ‘Annatto’…. the handy internet and Google tools aiding in my detective mission! Chuffed with my expert investigation skills, I thought we could just avoid those additives and relax. Not so. Upon eating some chips (which don’t contain MSG), and a cheese toasty, (which he had consumed many times previously), Max’s lips began to flare up again! As we were at the beach - and hence a couple of hours away from the RCH - we applied ice to his lips and were relieved to see the swelling eventually go down. (So much for the Drs claim that a ‘much more severe reaction would occur if it were to happen again’!). Max’s lips have swelled four times since, each time after something he has eaten many times previously, but each time his lips go back to normal within 30 minutes or so and no other symptoms arise. Very bizarre indeed. I have spoken to our Dr KT about it, to which she prescribed some anti-histamine…..but she didn’t seem overly concerned?! Our appointment with the immunologist is on the 8^th of Feb, hopefully she can shed some light on the situation. So being off the ‘clean diet’ is great, but as always - with us - there is bound to be some hiccups on the way! Thankfully, at our last hospital appointment Max had gained a little weight (0.2gms), so fingers crossed his weight can steadily increase and we can avoid that dreaded NG tube?! A trip to McDonalds is now a regular event after each hospital visit...

Devouring a cheese burger....

.....minus the pickles of course!!

As Max is now feeling more like himself, his dramatic acting and unbelievably well developed negotiation skills have become the major frustration for us. He can be a bit of a 'sookie-la-la' at times, and meal time (including administering all his medicines) can last for more than an hour at a time, which is oh so frustrating…….


An example of our morning routine:

Me: "Come on Max you need to have some breakfast"

Max: "No I don't!....I want to watch Top Gear"

Me: "Ok, I'll put on Top Gear once you have a mouthful of your egg...."

Max: "No! Top Gear first, THEEEENNN mouthful..."

Me: "NO! mouthful, THEN Top Gear...."

A bit of a forced cry occurs and a cuddle is requested, then, just when I think I have succeeded by eventually managing to get the fork to his mouth ... Max quickly turns his head away....
Max: "Oh nooooo! It's too cold!...it needs to go in the microwave......"

Another frustration of ours is that Max is often spontaneously struck down with an ailment I have coined "BLS : broken limb syndrome".... or BoLlockS!! It is clearly mood dependent, and manifests itself by his hands or legs suddenly becoming incapable of performing any task I ask of him, as they have either "fallen apart", are "broken" or are "lost"! This usually occurs around meal time when I ask him to feed himself, or if I ask him to go and do a task....

Example:
Max: "I caaaaan't walk.....", 

Me: "Why Max?"

Max: "...because my legs are broken...they don't work anymore!!!"

When, however, Max is in a good mood (or he has forgotten about his 'poor limbs') he not only walks; but jumps, runs and even gallops!!! "Look Mummy look, my legs are working today!!!"

Hospital visits are now down to fortnightly, and in some respects they are getting a lot easier. The rewards of a new matchbox car after his blood tests... a trip to Maccas for a cheeseburger, and the promise of a ride on the firetruck makes things all worthwhile for Max...

Blood tests have never been pleasant; but as Max now knows what to expect, he proceeds to instruct the pathologist on what to do! As he pulls up his sleeve, he whimpers “I don’t like it when you take my blood, but you need to put the butterfly (type of needle) in this arm, and you have to do it veeeeeery slowly….ok?”.  

He is also getting much more tolerant with Dr KT. He no longer shrieks out “No, I don’t want to see you…..I don’t like you….at all!” Dr KT would always exclaim “Gee, lucky I’ve got thick skin”. Nowadays, it’s a little more friendly.... “You’ve got poo poo on your head!’.  

As Tim mentioned in our last update, Photopherisis may have been on the cards if Max's skin was not improving. I initially was unfazed by the prospects of Max having to have this treatment. I knew it would be a lengthy process, weekly at first, then fortnightly, then monthly…..for possibly many years. But naively I thought it would just require Max to have a canular inserted, blood treated, then the canular removed for each treatment session. After speaking more in depth to Dr KT about it at our last visit, boy was I wrong! Max would require a central line, similar to the Hickman line (aka Mr Hose) but much more uncomfortable, stronger and less flexible due to the large amount of blood flow that has to pass through it. Having a central line will also once again bring the threat of more infections and the regular dressing changes and bathing hassles.....so heres hoping something 'magical' can happen and his skin can resolve its issues with his new immune system......to avoid this having to happen......soon!

It continues to be an effort for me to do much around the house, or talk on the phone, as Max is always demanding something of me...whether it be to feed him, play with him, or watch some special maneuver he has devised with his cars. The only proven way I can get at least 30 minutes of 'me' time, is by turning on Top Gear....thank God for Foxtel!!!  

Thank you to:

• Lis B for the cool 'stars and astronauts' torch.
• Amy M for all the Cars, macaroons and lovely visit and play.
• Nurse Helen for looking after Max while we celebrated Mapa's special birthday, and the remote control lamborghini!
• Eph B for the 'Top Gear' mags and Ute, and Mike for the 'ride' in his pick-up truck. 
• ...and everyone else for the wonderful X'mas presents for Max.