There and back again - the prequel (Day +616)

Howdy fans of der Starke. And so we have finally gotten around to updating the blog. With all that has been going on in Max's world over the past two months, it is fair to say that we have been very busy. In fact 'very busy' would be greatly understating the matter. The good news is Max is out of hospital, his skin looks as good as it has for a long time and he's been having a grand old time reacquainting himself with his ever expanding fleet of toy cars. 

Since we last wrote (sorry to keep you hanging!) Max has had a 'permacath' surgically implanted to facilitate the photophoresis therapy (Mr Hose Mark II), begun photophoresis, been discharged from hospital, diagnosed with an infection which required daily IV doses of antibiotics at home, readmitted to hospital when the infection wasn't responding to the antibiotics, underwent a two week course of stronger antibiotics in hospital, discharged again, diagnosed with the same infection and readmitted to hospital, began another course of antibiotics, had the permacath removed as it was deduced that it was probably harbouring the infection, in turn temporarily suspending photophoresis, and finally, discharged from hospital again for the third time in two and half months. Meanwhile, Bee has not been too well herself and our renovation, which we started the very day Max was first admitted, continues at a cracking pace. Very busy indeed.

Max first admitted in Emergency...before the fluid boluses blew up his body.

So let's go back to where we last left you. Max was still in ICU and he was just about to commence photophoresis. At the time of writing the last blog, because we weren't out of the woods by any stretch and we didn't want to alarm anybody, we didn't quite convey how perilous Max's situation had become.  As you may remember, Max was admitted to hospital with a very high fever on a Wednesday. By the next Monday, the fever had gone but his breathing function was slowly diminishing, as evidenced by his falling SAT (Oxygen Saturation) scores and so he was admitted to ICU where he was put on a BiPap breathing machine. Still, nothing had turned up in the tests and all the doctors were at a loss as to identifying what was causing Max's ill health. Over the course of the week, his breathing function had deteriorated further and showed no signs of improving. 

On the BiPap machine 24/7!

On the Friday night, due to exhaustion on Bee's and I's behalf, we decided to, for the first time, spend the night away from Max's side and to leave him alone with the nurse. Unlike other wards, ICU is not really set up to accommodate parents staying overnight; there are a couple of chairs to sit on and that's it. No pullout bed. No bench seat. This is understandable for many reasons, one of which being that in ICU each patient has their own nurse, so there is always somebody by the child's bed.

At 6am on the Saturday morning we got a phone call from a doctor in ICU to tell us that Max's breathing had gone downhill overnight and that the morning's x-ray showed that his lungs were getting 'cloudier'. They claimed that they really had no other choice but to intubate him (i.e. insert a tube down his throat and into his lungs to help him breathe). Bee was the unfortunate one to take the call but I was able to hear every word the doctor said on the other end of the line and the ominous tone in which it was delivered. Worst wake up call ever.

We quickly got dressed and ran over to the hospital where we were further briefed by the doctor on why they were intubating Max and what the procedure entailed. We then each gave Max a kiss on the forehead and wished him luck before we were ushered off to a waiting room and told to wait about half an hour. After 40 minutes, no one had visited us so I headed out to the nurses station to see WTF (what the freak) was going on. As I was walking to the station, the anaesthetist who assisted with Max's intubation was walking away from Max's room and towards me, but talking to someone in another room as he walked. "That was hairy,” he said in the tone of someone who had just come from a very, very hairy situation. (I don't think he recognised me - the father of the child in the middle of the said very, very hairy situation - otherwise you would have hoped he wouldn’t have been so candid). Anyway, it’s probably not the best thing to hear as you’re waiting for news of your child. Cue more WTFs.

At the nurses’ station, I was told to wait just a few more minutes. Eventually, the doctor came to see us and explained that despite intubation being a regular, ‘every day’ procedure, it had been hairy and complicated by the amount of 'gunk' that had got in the way of them inserting the breathing tube. Although a straightforward operation, the patient's lung muscles are switched off during it, with oxygen supplied by somebody squeezing a bag at regular intervals to inflate and deflate the lungs until the tube is inserted. 'Gunk' tends to complicate the bag handler's job. The good news was that the procedure was eventually successful; his SATs were holding steady and although bombed out by sedatives, he was breathing comfortably with the machine. Seeing him again was a weird mix of both utter relief and shock to see him hooked up to the machine with a tube sticking out of his mouth.

Intubated...fluid all gone from his body...but still playing havoc in his lungs

The doctors explained that the purpose of intubating Max and putting him on the breathing machine was to give his lungs some help and recover a bit until whatever it was that was ailing him passed. What we knew was that he had fluid on his lungs, that the x-rays of his lungs were not flash and that the doctors where no closer to identifying the cause. Was it an infection? Bacterial, viral or fungal? Was it possibly Graft Versus Host disease manifesting itself in his lungs? Or was it something altogether unexpected? By this stage Max had had so many blood tests, xrays, ultrasounds, MRIs and CAT scans it was frustrating not to know what was going on but Bee and I had to keep reassuring ourselves that Max was in the best possible place to help him get through this.   

One of the MANY scans Max had.

The plan ahead, according to the doctors, was to gradually dial down how much work the machine was doing compared to his lungs and the percentage level of oxygen being given, making sure that his SATs held, until eventually Max was effectively breathing on his own again. Once this point was reached they could consider extubating him. 

The next two days, Max was pretty much out of it. On Sunday night he started to stir and was noticeably agitated by an itch that was attributed to the morphine he was receiving for pain relief. Although he was incredibly uncomfortable, it was reassuring just to see him moving around again.

Still intubated, but clearly not sedated as much as he should have been.

Monday arrived and it was a great relief to see the back of what was a pretty horrible weekend. From Monday, Max started to improve quite quickly.  With each day that passed the news was that his x-rays were looking better and that his breathing was improving. Each time the nurse dialled down the ventilator was a cause for celebration. They also gradually reduced his level of sedation and he was becoming noticeably more lucid. We knew Max had well and truly turned the corner during a Music therapy session on either the Tuesday or the Wednesday. I was helping out the music therapist, as she sang the ‘frogs jumping in the pond’ song, by removing little magnetic frogs from a board and putting them into a container in time to the music. Before I could remove the second frog, Max had reached up and snatched the frog and put it into the container. What a cheeky bugger!  (video to follow soon)

A Music Therapy session with Beth

On the Wednesday, after a bit of a delay, Max had surgery to put the line in his chest required for photophoresis. On Thursday morning, Max had his first session of photophoresis. On Thursday afternoon, after a while of sitting on 21% Oxygen and Max consistently beating the ventilator to each breath, the tube was removed and we were able to hear his sweet little voice again; Top Gear was on his DVD player at the time and his first words were ‘Watch this bit!’. Our Maxi, was back! On Friday we left ICU, after a stay of 11 days, for the relative home of the 6^th floor.

In Mum's arms again!

To be continued…

UPDATE: Here's a video of Max and the speckled frogs

Return to hospital (day +547)

Max der starke blog September 13th 2011

Hello loyal readers. The trio der starke have unfortunately returned to hospital. Max has been laid low by a mysterious infection and is currently being treated in ICU. Over the last couple of months we have made three trips to the emergency department for various reasons. For the first two, we were sent home the same day. On the third trip, Max was admitted and he's been here ever since. It has been a bit of a hairy ride with plenty of ups and downs, but after a not so fun weekend we hope he is now on the way up.

On Wednesday morning (31st August) Max awoke with a temp of 40.8C. We took him to emergency where his blood pressure was measured as being extremely low. The combination of these symptoms suggested Max was suffering from an infection of some nature. Given Max's severe immune suppression therapy, any infection is treated with extreme caution and he was admitted after a lengthy stay in emergency.

To correct the blood pressure,  over the course of three days, he was given boluses of IV fluids. However this fluid, not unexpectedly due to the infection, leaked from his veins into his tissues causing him to be very bloated in the arms, hands, chest, legs, feet and face (Our little Michillin man). The blood pressure was up again and the temperatures down but now Max had a new problem to contend with...

Over the next five days Max was shuffled between three different rooms. The first two nights were spent on the eighth floor as there was no room available on Max's home ground of the the sixth floor. Friday night was spent in his old room T2 in the fish bowl, but there was little time for nostalgia as we were moved again on the Saturday morning to another room on the sixth floor, S9.
  
On top of the temperatures, Max also had a few episodes of vomiting and a serious case of diarrhea to deal with (oh the memories!!!!). Due to his struggling to keep anything in for too long, it was feared that his meds were not being properly absorbed into his body. Therefore on Friday (2nd Sept) Max had surgery to insert a central line into his neck so as to administer all these drugs - along with all the 'usual' meds he takes - intravenously. In fact on this visit so far, he has had a canular put in his left arm (lasted two days), his right arm (a week), his left foot (lasted about 6 hours before falling out), his right foot (still going after 4 days) and an arterial line also in his right foot (took 3 doctors and 5 attempts to get it in). He also has nasal gastric tube inserted for nutrition as he hasnt eaten a thing since we've been here.

During these days we were visited by many doctors and specialists from all over the hospital, including oncology,  ENT, infectious diseases and rather ominously, ICU. All were stumped by the fact that despite presenting with classical symptoms of an infection, nothing seemed to show up in all the tests. However, the concern for the infection was beginning to be overridden by the concern for Max's respiratory function. 

Due to the fluid build up on his chest and lungs, it was becoming increasingly difficult for Max to breath. As a result on Monday (5th Sept) he was transferred to ICU where he could be kept a closer eye on. He was first put on  a 'BiPap' machine to assist with his breathing. Max was a trooper with the big mask that he had to wear full time - we can only imagine that it was extremely uncomfortable. He really didn't complain much - his only strong demand was for "a drink - I'm reaaaaly thirsty". Unfortunately, do to his fluid overloading, he was put on a restricted fluid intake and was only allowed 50mls every 2 hours.

Unfortunately the breathing didn't improve and at 6 am Saturday morning, the ICU doctors decided to intubate Max and put him on a mechanical breathing machine. Since then, his breathing function has improved and the xrays of his lungs have started to clear up a little. Hopefully he will be off the machine by the end of the week - and as the big tube will no longer be wedged down his throat, he will once again be able to speak. We miss hearing his voice.

The great mystery remains as to what struck Max down in the first place and how it made him so sick. Of the barrage of tests that have been taken, none has yet to return a positive result for either a bacterial, viral or fungal infection. As time passes, the chances of them finding anything diminish and yet given the broad spectrum of 'anti' drugs he is on, it is not as important that they do actually identify the particular infection. Whatever it was that triggered the fever is likely long gone. 

As to why his lungs deteriorated to the point that they did, the theory being floated is that whatever infection he did have, the effects were compounded by his graft versus host disease. In what will hopefully turn out to be a great piece of luck, a photophoresis machine suitable for use with smaller patients arrived in Melbourne just last week and the oncology doctors are keen to try it out on one of their patients. Max, as it turns out, just happened to be in the right place at the right time. We have talked about photophoresis as a potential treatment before but it wasn't pursued as the previous machine that was available locally was basically too big for Max. "What is photopheresis" I hear you ask? Simply, it's the process of connecting a patient to a machine which extracts their blood, filters out certain white blood cells and exposes them to UV light, then pumps it all back into the patient over the course of a few hours. By some mystery of science, over the course of multiple sessions, this treatment of giving your blood a suntan has helped resolve a lot of problems experienced by sufferers of graft versus host disease, including problems with the skin and lungs. It doesn't work in all cases, but we can only hope it will for Max.

The photophoresis option has unfolded very quickly and they are hoping to start Max on the treatment this week! Another extremely fortunate happening is that they are actually physically bringing the machine to Max. How special is that! We guess that the urgency relates to the fact that if his lung condition is related to gvhd they will want to act before any permanent damage is done. He first needs to have a new line (Mr Hose mark 2) put in which will happen as soon as tomorrow. The line is much more robust than the Hickman line (aka the original Mr Hose), as it has to cope with a greater flow of blood (it's plugged into an artery, not a vein).  It will be a twice weekly therapy for the first few weeks, then reduced to weekly, monthly etc. We will keep you informed as to how it progresses.

Needless to say that throughout his recent trials and tribulations, Max has lived up to his name as the strong one. We are repeatedly amazed at, despite what gets thrown at him, he continues to overcome  each obstacle with great courage and determination. He is our hero.

We just want to also thank everyone for all your messages of support. A special thanks must go out to our extended WAS families across the globe for your continued support, prayers and love.
  

The Birthday Boy (Day +472)

We had a very exciting day yesterday celebrating Max's 4th birthday. Considering this time last year we celebrated this occasion in hospital, it is another happy reminder of just how far he has come in the last twelve months.

Here are some brief points of his medical issues this past month:

Weight

Max's appointment with Dr KT in early June brought with it the unfortunate observation that he had lost a little weight. It has been a constant struggle over the past year to get him to put weight on, so to find out he had gone backwards since the last visit was a concern. He was ordered to come back to hospital two weeks later where thankfully, like a reverse weight watchers meeting, the scales showed that he had gone back up a little bit. Hopefully the weight loss was just a temporary set back, possibly triggered by the minor cold he had suffered the week prior. 

Ears

It was also observed that Max had an over abundant supply of wax in his ears, so Dr KT ordered it to be, literally, vacuumed out. The ENT (Ear Nose & Throat) registrar was very impressed with how tolerant Max was during the 'clean up' procedure. Under the mountain of wax a small infection was noted, so drops were prescribed to be administered in both ears three times a day for two weeks (a very time consuming exercise). We were pleased to find at the follow up ENT visit that Max's ears remained clear and that the infection had resolved. The ENT registrar also thought that as Max's ears were so clear, it was a good time to have his post-chemo hearing check done. Max went to have his audiology test done on Tuesday, which he passed with flying colours.

Eyes

Bianca mentioned to Dr KT that Max often rubbed his eyes when irritated, to the point were he would flip his eyelids inside out. She asked Bianca whether Max had tears when he cried to which Bianca replied 'No'. To help bring some relief to his dry eyes, Max has been prescribed eye drops, which should be inserted three times a day. However this proves to be impossible. Despite his braveness in handling a variety of treatments to all parts of his body over the journey, Max simply cannot stand having eye drops put in his eyes.

Skin

Max's skin continues to show little signs of improving. Dr KT is currently working through the paperwork to get Max onto a new medication that according to a small study has had some success in treating GVHD. We have just realised that we have mentioned this drug before in the February blog but it wasn't pursued any further as, at that point we all thought his skin may have got better on its own. We should know by the next visit whether this application has been successful.

May milestone madness (Day +442)

In the nick of time we've managed to get a May blog out the door. It has been a pretty eventful month with Max passing many milestones. Health-wise, his skin is still not flash (blotchy, thickened, flakey and still no nails) and his scalp is quite crusty. He was knocked around a little last week by a cold but he seems to be getting on top of that so that's a good sign. Max is still the master procrastinator at mealtimes, making up all sorts of excuses as to why he can't eat. However, that said, when he does enjoy a particular meal...there's no stopping him. Current favourites are spaghetti bolognaise, frankfurts and sausage rolls!

Bolognaise with the mystery hiding vegetables!

As for milestones reached:

No more masks required when visiting hospital! That's right, Max is no longer required to wear a mask in the fashion of a Japanese public transport commuter (for the blogspotters out there that reference is like all my jokes: recycled) when visiting hospital. Not that we had too many troubles getting him to wear it, but is nice not to have to worry about it.

No more nappies! Max has at last levelled up to being a fully fledged member of the nappy free kids crew. For a while now Max, despite being toilet trained still needed to wear nappies at night. After around a month of wee free nappies, Bee made the decision for Max to go to bed sans nappy. And he hasn't looked back.

No more steroids and no more Urso! Max has been on the steroid prednisolone ever since his transplant. Although the steroid hasn't turned him into a beefcake (that's a different type of steroid) they have been important in attempting to keep the peace between him and his new immune system, and have played a part in dampening the impact of the Graft versus Host disease affecting his skin. Unfortunately, like most medications, there are side effects and the steroids were responsible for his lack of growth, osteoporosis, spinal fractures and his cataracts. Max had been slowly weened down to a very low dose of the steroids. With much excitement, at the the last appointment with Dr KT, she said it was time to take the training wheels off and see how Max would handle life without the steroids. She also said we could drop the drug Urso (prescribed to lessen the risk of developing GVHD of the liver as Max was showing signs of impaired liver function) from his regime of medications.

Max is now down to 9 medicines (5 syringes and 4 tablets) in the morning,
1 tablet for lunch, and
8 medicines (5 syringes and 4 tablets) at night.

Re-vaccinations! When they wiped out Max's original immune system, prior to the bone marrow transplant, it meant that all his original vaccinations received since birth counted for nought. At some stage we knew that he would need to take them again but only when his new immune system had built up sufficiently. Well that time has finally come and Max this month received for the second time...Pneumococcal and Meningococcal C vaccines, along with an Influenza shot for good measure.

Relaxing of isolation restrictions! Dr KT has further relaxed Max's restrictions for interacting with the open world. Max celebrated by attending a couple of small birthday parties, a quiet christening, and giving his mum a hand at the local supermarket.

Emma's Christining

Our Stud at Griffins Birthday!

First time Shopping in over 1 year!

When not out enjoying a bit of the world, Max is quite content occupying his time at home with Mum doing beautiful artwork, drawings and painting!

Self Portrait

Upon asking Max what the big red splodge in this picture was, he replied "It's your big heart Mummy!"

Another portrait of Mum

and Painting...

Thank you to Paul and family for all our goodies!

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