Party tiiiiime! (for the most part) Excelleeeent! (Day +410)

Hello all,

It has been a while since we last updated the blog. Max has been quite well recently and continues to impress us with his feats of mental and physical dexterity. Since we last spoke, we have had many reasons to celebrate including the anniversary of Max's transplant, a special family birthday and, depending on your point of view either the holiest of christian holidays or a celebration of cheap chocolate, Easter.

The one year anniversary of Max's transplant was on the 15th of March. This was quite a momentous occasion for us and we partied accordingly. Oma, Mawa, Opa and Mapa all helped us celebrate the milestone with presents and a magnificent feast! Needless to say, Max got into the spirit of the evening and very much enjoyed being the centre of attention.

THE  'BIRTHDAY'  CAKE!

Excited 'birthday' boy

The Basket of Goodies

It's still a long way away but once Max has fully recovered, we are planning on having a massive party for all of his family and friends to celebrate his overcoming of Wiskott Aldrich syndrome. Stay tuned.

A couple of weeks later, Max had a particularly full on lip-blowing-up episode, which we managed to capture for posterity...  

Nice lips huh!?

Later that evening, as Tim had endured a big evening at the footy and had fallen asleep on the couch, I decided to let Max sleep in our bed...just incase...

As it turned out, I was so thankful that I had decided to do this, as during that evening I awoke to noise coming from our back room....as I went to investigate...I noticed the back door was wide open...and Tim still asleep on the couch! To cut a long story short Tim and I startled the (...insert rude derogatory terminology here...) from attempting to disconnect our computing equipment and they fled....leaving only with my laptop! The immediate concern for us was whether I had backed up my thesis...which thankfully I had!!! Police arrived within 10 minutes, sniffer dogs managed to track a scent to a few blocks away, and finger print officers did what they do best (but unfortunately were unable to detect any prints). Through all of this excitement, Max remained sound asleep in our bed!  

The next weekend we celebrated Auntie Lou Lou's birthday. It was also the first time that Max and his five cousins, including the twins, had all been together. It took a little while for Max to feel relaxed and comfortable with so many other 'little' people, but by the end of the day he was enjoying himself very much!

Cousins

And then a couple of weeks later it was Easter. The Easter Bunny came to visit Max, the difference this year of course is that he visited at home and not hospital. He (or was it a she???) pulled out all stops for Max, building an obstacle course with an Easter Car Hunt and the prize of a scrumptious Chocolate bunny at the finish line! Just how clever is that Easter Bunny?

The Easter Bunny trail....leading to surprise Cars...

Surprise Car number 3...

...and the big chocolate bunny!

Analyzing his surprises

Happy Boy!

When not partying or eating chocolate, Max has been spending his time:

Filling out activity books designed for children of much greater ages, which he thrives on!...

Jammin' with Dad...

Playing a lot of soccer and golf....

And watching a lot of television (Current Favs: Dora, Mickey Mouse Clubhouse and Big Bang Theory).

Medically there is nothing much to report. Max's skin is stable; it's not getting any better but it's not getting any worse either. He had another (overdue) infusion of biphosphanate to strengthen his bones. Apart from the stress involved with trying to get the canular in, the infusion went along well with no dramas. Hopefully Max will only need to have one more infusion (in about 4 months time), and then depending on his bone density results we can say sayonara to them.

Chillin' in the Day Oncology Suite!

His muscles are ever so slowly but surely gaining definition. His weight is still low, but rising nonetheless...he broke the 14kg mark at the last weigh in! He still has a way to go to match his pre-transplant weight of 18kgs. Unfortunately Max's 6 week stint of 'in-home' physiotherapy sessions came to an end a few weeks ago. But some great times were had and I now have excellent ideas put in place of how to keep up with Max's strengthening regime.

In Home Physio session

Tim and I managed a small getaway to the city for the night (including massages and dinner....courtesy of my wonderful group of friends - Thank you so much for your generous gifts). Tim and I had an absolutely wonderful time! We have also made the decision to renovate our humble abode so there are plenty of exciting times ahead.

You've come a long way baby!...(Day +365)

Just a short blog update to commemorate the delivery of Max's new immune system.

On this day last year Max received a cord blood transplant which cured him of his Wiskott Aldrich syndrome. I expect this day will be a special day for us for the rest of our lives....it really is another birthday for Max.

March 15th for his immune system.
June 29th for the rest of his body.

Max receiving those golden cord blood cells March 15th 2010

The cord blood...the donor to which we will be forever grateful

Avid followers of our blog will know of the many ups and downs and twists and turns we have endured this last year...although we are not out of the woods just yet, boy have we come a long way....

From the fear of Max having a brain heammorage if he was to bump his head.....
....to now rejoicing in the fact that his body can now actually produce a scab!!!


Ahhhh platelets....we do love thee!

Today!

A more detailed blog of this months happenings will follow in the next few weeks...

King of the Cubby House (Day +349)

Hello everybody,

Welcome to the better-late-than-never February edition of the Max Der Starke blog. You will be glad to hear that despite a couple of small setbacks, Max continues to impress us with both his physical rehabilitation and his mental advancements. 

Max wrote this all on his own!

Medically speaking, there have been a couple of developments. Max had his appointment with the Immunologist to explore the possibility that he had developed an allergy. If you remember from the last blog, Max has recently experienced on a few occasions after eating, a spontaneous swelling of his lips. Despite much amateur detective work, we had been unable to narrow down the cause to any particular type of food or additive. Well, according to the immunologist, the most likely cause of Max’s reaction is idiopathic angioedema, which for those unversed in latin or medical terminology translates as ‘the cause of the swelling is unknown’. Given all that he has gone through, the immunologist said that it would be difficult to try and pin the root cause down to any one thing and as no other more serious effects were experienced, we were told just to continue to keep an eye on it, and if he has the reaction again, apply ice and/or administer anti-histamines - and avoid that food.
  

As for Max’s skin, this continues to be a concern. The bout of hot weather experienced in Melbourne a couple of weeks ago seemed to knock him around a bit and his skin flared up worse that it had been for a while. Whether it was a good thing or not, it was probably at it’s most fiery on the day of Max’s appointment with Doctor KT. It had been hoped that over time Max's skin would settle down all on it's own, but according to the Doctor, it might be time to try a new course of action. In the past, they have investigated Photopheresis as a treatment option but this has pretty much been ruled out due to Max’s size (or lack thereof). We are expecting that Max will soon be prescribed a medication traditionally used in the treatment of cancer but that has recently been used with some success in treating GVHD. We'll let you know more after his next visit to Doctor KT.

Feet looking pretty red and flakey.

In the past year, due to the steroids Max has been on, he has not grown in height and, as mentioned in previous posts, has dropped a couple of kilos in weight. Hopefully in the long term he will catch up some of this lost time in his physical development. The more immediate concern is his weight which continues to hover around the 13.5 - 14 kilogram mark. He has gone a little backwards in his enthusiasm for food. An unfortunate side effect of him becoming more expressive is that he is quite brilliant in articulating long winded excuses as to why he is not quite ready to eat. This can be simultaneously hilarious and exasperating. As was the case in hospital, his tastes continue to change on a frequent basis; yesterday's favourite (eg pork dumplings) can easily become today's "I don't like it any more / I am off them" meal. The current favourite is Spaghetti Bolognaise, but we'll see how long that lasts.

On a more positive note, with each day, Max becomes more physically active and capable. It looks like all of Bianca and the physio's hard work is starting to pay off. On top of the physiotherapy session Max has on each regular trip to the hospital (once every two weeks), the hospital have arranged for Max to have, for six weeks, a weekly at home physiotherapy session, which needless to say he enjoys immensely. With the improvement in the weather of late, Max has been able to spend a lot more more time out in the backyard, running around, kicking the soccer ball and playing in his cubby. The other weekend, while Bianca and I were cleaning out the garage, we took our eyes off Max for just a couple of minutes. Before we knew it, Max was demanding that we should come out from the garage to the backyard where we were shocked to see that he was standing on the landing of his cubby house. The amazing thing being that he had climbed up the steps of the cubby house all on his own.

Amazingly, yesterday it was a year to the day from when Max had his Hickman line put in. With the next month marking the one-year anniversary of his transplant look out for a special edition anniversary update.


Cheers,


Tim

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.

Riding in a Big Red Car (Day +273)

Hello everybody! Seasons greetings to you all. Since our last update, there has been a lot going on in the world of Max. There has been a few lows and a couple of very big highs over the last month. The best news we have is that we are confident of being able to celebrate a happy Christmas together and at home.

Max der Starke

Max’s skin does not seem to be improving as quickly as we would like. As you may recall, one of the complications of the transplant is that Max has been afflicted by Graft Versus Host disease (GVHD) of the skin, the symptoms of GVHD being constant itchiness, flakiness and redness. Although we are fully covering him in dermeeze cream twice a day, his skin continues to dry out very quickly. This pretty much means he is continuously shedding dry skin; it’s almost like he is perpetually recovering from sunburn. We mentioned it again to Dr KT and she didn’t seem to be too concerned. Like most of the complications Max has experienced, she assured us that it’s really just a matter of time before his new marrow and his skin put aside their differences and start playing for the same team, so to speak. Depending on how his skin GVHD goes in the new year, they may organise for Max to undergo ‘photopherisis’ - a therapy where they withdraw Max’s blood, expose it to ultraviolet light and then put it back into him. It’s a newish type of treatment for GVHD and the only machine in Melbourne that performs it is designed for adults (at the Peter MacCallum Cancer Centre) so they would have to modify it to suit Max. We’ll keep you informed.

At the end of November we finally had the appointment with the Opthamalogists to discuss Max’s squint. As we mentioned in the last blog, Max has started to obviously favour one eye, and our fear was that this might lead to his brain permanently ignoring the other eye. We first visited one opthamologist who did some basic eye chart tests and then put a few drops in Max’s eyes to dilate the pupils so that they could get a really good look. Max wasn’t too happy about having the drops put in but he settled down pretty quickly after having a little bit of a tantrum. After waiting for half an hour for the effect of the drops to kick in, we returned to the eye clinic and met with another opthamologist who with a series of tools had a really good look inside Max’s eyes. The good news is that there is no rush to have the corrective surgery performed for his squint as the Doctor was relatively happy with the eyesight in the less frequently used eye. The bad news is that, due to the high levels of steroids Max was given to treat his GVHD, he has developed cataracts in both of his eyes. According to the doctor, there is again no rush to do anything about the cataracts with the stage that they are at, and their preference is always to delay surgery if possible until at least five or six years of age when the eye is more fully formed. Max will continue to have check ups with the opthamologist every three months to monitor the condition. Coincidentally, the day we visited the eye clinic was the day they were taking delivery of a new diagnostic machine that allowed them to take very high definition photos of a patient’s eyes. The opthamologist asked if Max would like to see the new machine and if he wanted to, he could have his picture taken with it. Max took to the machine like a professional and had a room of about 8 medical staff enthralled as he sidled up to the machine and patiently waited to have photos taken of his eyes.

Eye Camera

A while back, Bianca noticed Max had a large bruise  about the size of a 50 cent piece on the side of his rib cage. At the centre of the bruise was a small hard lump. Over time the bruise died down but the lump remained. Dr KT didn’t seem to concerned by it, but after it hadn’t disappeared after a couple of weeks, as it should have if it had been a run of the mill bump, she decided to organise for an ultrasound . We had the ultrasound last week, but this didn’t seem to shed any light on the situation. The ultrasound person assured Bianca that it is in all probability not cancer, but that it’s also something they cannot immediately explain. They will continue to keep an eye on it and may end up surgically removing it and performing a biopsy on it.  Thankfully it seems to be getting smaller over time, not larger.

Well that’s probably all the bad / disconcerting stuff out of the way. In the good news column, last week’s blood tests showed that pretty much all his blood counts, apart from the lymphocyte counts which will only come up once he’s off immuno-suppressants, are at normal levels. As in ‘normal healthy person’ normal. I nearly fell off my chair when Dr KT said that his platelet count was at 356! 356! His liver also seems to be settling down which is a big relief; for a while there we were fearing that Max was going to go three for three (skin, gastrointestinal, liver) with the GVHD. In terms of medications, we’ve been able to stop the nose spray and reduce the blood pressure meds (the last one to wean is the amlodepine). We’re hoping to drop the amlodepine when the packet runs out. Max is back on ‘Nilstat’ mouth drops (3x/day and some Kenalog mouth paste) after having a couple of nasty ulcers appear a while back and he’s having a new medicine called ‘Ursofalk’ for his liver, which seems to be doing its job. Max is still on a truck load of medicines, and can recite them all...

Morning Medicines

Afternoon Medicines

Evening Medicines

We’re hoping to find out on this Tuesday’s appointment with Dr KT whether Max’s appointments can be reduced to fortnightly. We also might find out if we can start to relax the conditions of Max’s isolation with adults from people other than me, Bee, Oma, Opa, Mawa and Mapa. Fingers crossed.

In the really good news column, Max was fortunate enough to have his wish for a cubby house granted by those fantastic folks at the Make a Wish foundation. And what a cubby it is! A couple of tradies came around on a Thursday morning and knocked up what is a massive cubby in about three hours (that translates as 18 ‘dad after a couple of beverages on christmas eve’ hours).

Mansion Cubby

Painfully for Max, we weren’t really allowed to acknowledge it’s existence until the official handover ceremony on the Sunday with the Make a Wish people although there is a rumour going around that Max may have checked out the sandpit that afternoon.

Sandpit

On the Sunday, we had a knock on the door from Terry and Darian from the Make a Wish foundation. Not only did they bring a cake for morning tea and a toy construction set for Max,  they also mentioned that they had another surprise up their sleeves. A couple of minutes later, what would happen to rock up in front of our house? Why, it was a Ferrari 599! We don’t see too many Italian sports cars in our street, so we figured something must have been up. In organising the cubby for Max, the Make a Wish people had learnt of his love of all things cars. They put the word out and luckily for Max, a lovely gentleman by the name of Joe came forward and offered to take Max for a spin in his brand new Ferrari. We abandoned all common sense and decided that it would be ok for Max to have a ride sitting on my knee in the passenger seat. Max was a bit slow to get into it, but by the time we had rounded the block and were back home he was already asking to go for another ride so Joe happily obliged him. What an experience for Max! Joe even kindly allowed us to take photos and videos of us with the car.

After the ride and photos, Joe and his wife took off, with the rest of us retiring to the deck for cake and tea. A lovely morning was had by all. Thanks once again to the Make a WIsh foundation for the cubby house and the experience of driving in a Ferrari.

Thankyous:

Elle for the beautiful box of sweet treats

Aunty Jude for the lovely cards, and
Mawa and Mapa for taking us to see Blondie and to Opa and Oma for looking after Max.

At Blondie

So that rounds up another blog. We’ll try and update it in early January. Thanks for reading and we wish you and your families a very merry and safe christmas.

Please Sir, I want some more.....(Day +241)

Ok, I know....its been a while.....but writing these updates are hard work!


As mentioned in our last update, so about a month ago now (!), Max was feeling quite poor (vomiting, no appetite, and consequently had a dramatic weight loss)....we learned two weeks ago the possible reason for this was that (along with his liver issues) Max had somehow contracted the 'parainfluenza virus'. This was a tad frightening as we were told that although this virus is not so bad for the 'regular' folk - for transplant patients it's potentially fatal. Although Dr KT didn't seem overly concerned, Max was 'banned' from the 'isolation room' that is our waiting room - and instead were relegated to another room - until Max is deemed clear of the virus. To ease his symptoms he was prescribed some ventilin which seemed to work quite well, in fact Max totally loved using the whole 'puffer and spacer' apparatus! There's not much else you can do with viruses as antibiotics don't do squat! How Max managed to contract this virus has stumped us, as we are ever so vigilant about keeping Max away from potential germs (ie no visitors into the home) and those of us he can see, are instructed by 'dictator Bee' to sanitize themselves before approaching the Master Maxwell! ..... Good news on Tuesday however, Max got the 'negative' result....so he is officially cleara of the para!


I'm not sure if I had mentioned this in past updates, but Dr KT was always intrigued that Max's hair was not really growing back after the chemo. She prepared us for the strong possibility that it may not grow back at all due to his severe and chronic skin GVHD. This was naturally quite difficult to hear and it was very difficult for me to see other chemo patients who had recieved their treatment well after Max, but displayed full luscious heads of hair. I tried to remain positive and gave him many scalp massages to stimulate those follicules!! - but for a while Tim and I were resigned to the fact that Max may just be bald kid...teenager....adult - hey, at least he's a boy and can get away with being bald. But, I'm relieved to say that Max's hair is really starting to grow back nicely now.....

As Max not longer has Mr Hose (his Hickman line) - he has to be jabbed, poked and prodded in his arm every week to get around 5 viles of blood for his weekly blood tests. Naturally he struggles and complains a bit, but considering he never has any numbing gel applied, I think he is one completely amazing tough cookie!! Some of you may be thinking "why doesn't he just have finger pricks?" - well, this was attempted on the first time we had to get bloods done (after the removal of Mr Hose), however it was unsuccessful due to the large volume of blood that is required, and due to the fact that his poor little fingers are so sensitive due to his skin GVHD. 


Speaking of bloods......Max's latest blood results are wonderful: His White cell and Neutrophil counts are "fine" - according to the Doc....I interpret this as them being within the normal range?! But the exciting ones are the Haemoglobin and Platelets......
Hb is 120 (normal 110 - 140), first time it has been in the normal range since February!......and 
Plts are 236!!!!! (normal 150 - 400).....Jeeeepers! 
Dr KT was rather happy with those numbers, and reported: "Well, I'm glad to see his bone marrow had decided to kick in now!!!"


Although these results are fantastic, Max's immunity is still considered ineffective. Without getting too technical, Max's new bone marrow needs to start producing B-cells and T-cells, and according to Dr KT "Max doesn't have a B- or T-cell to his name"!! Looks like it'll be the full 18 months post transplant, at least, until we can venture out of our isolation 'bubble'.


Another lot of frustrating news is that Max still has significantly high liver function test results. A new medication has been introduced (...yes ANOTHER!)...and an increase in his MMF and cyclosporin (two of his immunosuppressant medications) to help calm it down. If this doesn't seem to be doing the trick, a liver biopsy is on the agenda to determine whether Max has liver GVHD....our Max doesn't do things by halves. If he does have GVHD of the liver, not only will it mean he has successfully performed the GVHD trifecta, but it will also mean increasing his steroids again (boo!).


As many of you may be aware, Max has had an alternating squint (stabismus) since birth. He used to go for regular check ups at the ophthalmologist to make sure that his sight was not deteriorating, and reports were always good, showing that both eyes were working well, albeit independently. The fear is that if one eye was to be used more predominantly than the other, the brain would in effect 'switch off' the eye that wasn't being used. This would in turn make Max blind in that eye. Tim and I have noticed recently that Max is beginning to favour his right eye, I have brought this up with Dr KT, and an appointment has been scheduled for Nov 30th. We have always known that surgery (to realign the nerves to the eyes) is the only thing that will fix Max's squint, however, as with all surgeries comes risks, the major one being bleeding into the eye which would cause blindness. As Max's platelet counts were always extremely low, the risks of such bleeding were very real - so, the surgery was not advised until this issue was resolved. Now that Max does have platelets.....we shall see?.....(ha, pardon the pun!)


On a good note, Max's appetite has resurfaced....majorly! His typical daily menu consists of:
Breakfast: light, fluffy scrambles eggs on buttered toast (crusts removed please!) with freshly squeezed orange juice,
Lunch: either a cheese toastie with a thin smear of guacamole on top! or, a mix of chicken, mayonnaise, sour cream and celery on an open sandwich (once again no crusts!) and,
Dinner: Gnocchi with lots and lots of butter or sausages with mashed potato and pumpkin...and tomato sauce!
Snacks: Rice crackers and Strawberries!!!!!!! 
As he is still on a 'clean diet' I must prepare fresh meals and cooled boiled water in sterile bottles for him to drink....so looking forward for that to end.....it's like having a new born again....just with added 'attitude'!

Breakfast

Dinner - option #2

Tim had the week off last week (as he has been away all this week), so we made the most of the family time by taking Max to the park, as no one was there it was safe for us to play! We then ventured into a small 'collectors' shop on the way home....Max's eyes nearly fell out, he could hardly contain himself......cars everywhere!! So, of course we HAD to buy him one. 
Max had an absolute ball of a time.....only problem is he now wants to go to the park and the shop ALL the time. By next week, hopefully one of these requests won't be too much of an issue, as 'Make-a-Wish' has granted Max his wish for a CUBBIE with sandpit and slide! Will be sure to post some pictures......

Today we had our first official...'through the window' visitors.....Max's MG girlfriend(s!)...I thought it could be a bit of a tease....and it was terribly difficult for me not to be allowed to let them in....but Max thought it was fabulous!

So till our next update (probably in another month?!),  it's goodnight to you all xxx