Hello friends of Max. It has been a very long time since we last corresponded. Last time we wrote, Max had been going through some pretty tough times. He continued to have a very up and down time of it for the next few months, but before we bring you up to speed with all that and more, you'll be heartened to know that Max is the best he has been in nearly a year. In just the past month, in no particular order, he's celebrated his fifth birthday, gone to a couple of his friends birthday parties, rediscovered his love of blocks (and has been constructing some pretty amazing cityscapes everyday), developed a love of video games, attended his first game of AFL and has put on close to 5 kilos (with the help of a fresh course of steroids)! With all the playing, eating and celebrating, he's had a very busy month. Over the next few weeks we aim to update you on what’s been going on with Max over the past 9 months, starting with…

Off the canvas (September 2011 – November 2011)

A quick recap: Max was admitted to hospital on August 30 2011 with low blood pressure and a suspected infection. He was given fluid boluses with the aim of bringing up his blood pressure. These boluses leaked from his veins into his tissues creating havoc with his skin and lungs. When Max began having difficulty breathing, and the oxygen mask did not help, he was admitted to ICU. Here, Max was initially placed on a BiPAP machine, but as his breathing function / lungs had deteriorated further over the next few days, it was evident that he needed more help. Max was therefore intubated for a number of days. Once his lungs had become clearer and no longer required the ventilation, Max was let out of ICU to spend another two and half weeks on the sixth floor in hospital. He lost a lot of condition as a result of being 'out of it' for two weeks in ICU, so he had a long way to come back from before the doctors would let him go home. Not that we really had a house to go home to, but more on that later.

Max in ICU, BiPAP and Intubation

To this day, we are still in the dark as to what caused Max to become so ill in August. Some Drs speculated that it was possibly some bacteria or virus, but it was 'knocked out' quicker than it could be picked up in any blood cultures. Another theory was that his ill health in particular his lung deterioration was GVHD which had suddenly affected his lungs. Tim and I (and Max's main treating Dr) doubted this was the reason, as our belief is that lung GVHD has a more gradual onset. Nevertheless, it was this theory held by this Dr that instigated the desire to begin a new treatment for Max. Cue photophoresis. A permacath central line was surgically implanted and treatment began the next day.

First session of Photophoresis while still intubated in ICU

Being in hospital did make it easier for Max to have his photophoresis treatment. As the machine lived at the hospital, it was a small positive that we could just wheel Max down to either ICU or Day Medical for him to have the treatment instead of having to drive in to hospital twice a week. A treatment of Photophoresis itself is pretty uneventful. Apart from the occasional blood pressure, heart rate and temperature checks, once the nurse connected Max up to the machine, he just had to sit back for the next two to three hours and watch Top Gear while the machine went to work on his blood. Max took to the treatment pretty well and he didn’t seem to suffer from any of the potential side effects such as nausea. However the main risk with Photopheresis, as we unfortunately got to understand all too well over the next eight months, was that it required Max to have a permacath implanted in his chest to facilitate the flow of blood from him to the machine and back to him again.....and the number one risk when having any type of central line is....infection.

Photophoresis in ICU

Sleeping during treatment

Having fun during photophoresis

We left hospital in the last week of September, after a stay of about 4 weeks. We were all ecstatic to be leaving, considering that not three weeks before, Max was very, very ill. Our home was in the process of being renovated and in no fit state to be accommodating Max, but luckily for us; Bee’s parents were on an overseas holiday so we were able to stay at their house. Despite Max and I (Bee) having to make the early morning - day long - trips to hospital two times a week, every week for photophoresis, we loved the fact that we were once again able to cook our own meals, to lie on a couch and watch TV and to use the bathroom whenever we felt like it, without having alarms ringing and nurses/Drs interrupting us. We were living what felt like the lap of luxury! However, not long after, an infection showed up in Max’s blood. At first, Max was treated with a daily dose of IV antibiotics, administered by the nurses in the home. However, after a week or so, as the 'bug' was still persisting in Max's blood, they changed the antibiotic to one that had to be given twice daily over a two week course. Result: Max had to be readmitted to hospital. Ironically, during Max’s prior admission in which he was very sick, the doctors never were able to identify the culprit as to what had made him so ill. During this admission however, despite being admitted due to a known 'bug', Max was very happy and well within himself. Although this stay was much easier on Max, I think he still would have preferred not to be there.

Back in Hospital...but happy!

After the two week course of antiobiotics had finished we were all free to go home ... again. Unfortunately, a week later Max spiked a temperature during photophoresis and he was once again (!!!) admitted to hospital. On top of the recurrent infection issues; the placement of the permacath line in the vein within Max’s chest was causing the line to often become blocked. When lines become blocked, the machine cannot function and more often that not, this would mean that the current treatment session had to cease. Very, very frustrating! With all these complications in mind the doctors decided to remove the line, and a discussion was to be had as to whether treatment was to be continued. Tim and I were still very keen for photophoresis to continue, as we believed (on the contrary to some Drs) that it had made a small improvement to Max’s skin and overall condition since it had begun. We wanted to give it every chance of succeeding. After pleading our case to the Drs, it was agreed that treatment would recommence in around two weeks after a new permacath was inserted.

Permacath line #1 : Bad placement

After another week’s stay on the sixth floor, they removed the permacath line and Max was free once again to leave hospital. Max had two weeks of 'line free' time out of hospital in which he thoroughly enjoyed not having the inconvenience of a piece of plastic permanently sticking out of his chest.