Getting Closer........

I think we just have to get used to the idea that dates will change from one day to the next. We were supposed to meet with the BMT Dr on Thursday for our final appointment before admission. I received a call at 8pm Tuesday evening asking if we could instead come in 9am tomorrow (Wednesday) as there was not enough time to see us on Thursday! So, we had the appointment today.

All went well and we have been given the all clear to proceed to Hickman line placement on Friday 26th. We need to check in at Day Surgery by 7am, be at Oncology by 8am for Max to have a platelet transfusion – required due to him being cut open for the Hickman surgery – then wait to be called to the Surgery Ward for the line to be inserted. Max will need to fast from Thursday midnight until after the surgery – this will be a challenge! As many of you know I have been very nervous about the whole Hickman line bizzo (infection, bleeding etc.), so I was relieved in a way to find out that Max is required to stay in hospital till Sunday - to get over the anaesthetic; and as he will have a lot of bruising, he may need further platelet transfusions. Oh well, it’ll be a great way to give Max a taste of what it will be like for the next couple of months.

This means I only have tomorrow (Thursday)left to get myself organized before the surgery. I’ve been asked to design/prepare some singlets with a pouch for Max, so as to keep his new Hickman line secure. I’ll have to drag out the sewing machine tomorrow and get crafty! As a way of getting Max used to having this line in him permanently (for the next 8 months at least) we’ve been told to give it a name. Any suggestions?? I thought perhaps “Mr Hickie”……but that just doesn’t sound quite right???

Some dates:
Transplant admission date is set for Thursday 4th March! A little sooner than expected – but that’s fine, less time for us to worry and wait! (How’s my positivity!?) Max will start with oral chemo (5th to 10th March – 16 tablets every 4 hours!), then the ‘hard core’ intravenous chemo (10th to 13th March). Sunday 14th March drug free (rest) day. Monday 15th March Max will receive his new stem cells (cord blood). If all goes to plan (with no serious reactions/side effects from the chemo or stem cells) we are expected to be in Hospital until the last week of April – I can handle that!

We’ve been told that we can bring in some of Max’s old toys, as long as they can be wiped down/sterilized. But, I thought it’d be a nice idea to buy some new clean fresh toys, so I bought some new ones today. I know I'm probably being over paranoid…but I think I’ll sterilize/disinfect these new ones too! We can take in soft toys – but due to increased rate of germs on them, we’ve been told they must be put through the wash minimum weekly…..so, I’m not too keen on Max having such toys in there. Luckily Max prefers, if anything, to cuddle up to his matchbox cars at night!

I’m not likely to post again until I’m back home after Max’s Hickman surgery on Sunday….so till then, wish Max Hickman luck!

Tests, tests and more tests…

Today was our first busy day at the Hospital.

9am – Dental Appointment (as the Chemotherapy required as part of the BMT can potentially damage Max’s teeth, gums and saliva glands).

10am – Blood samples taken (to check on platelet count, immune levels etc..)

11am – ECHO and ECG of the heart (check out our 'Cable Guy' right).

12pm – Chest X-Ray.

1pm – Meeting with the hospital Psychologist. This was interesting! Here’s hoping we were successful in convincing her that we were both emotionally stable enough to get through this process…..?!

2pm – Brief discussion with Head Nurse about the Hickman line protocol. Although we knew of potential risks from our reading on the topic, having it directly relayed to us was rather scary and confronting. It was reinforced that hygiene is paramount as exposure to any bacteria at the entry site can cause serious infection, requiring immediate medical attention. Also if the line were to be damaged in any way (eg. accidently cut), we would be required to block it off as quickly and securely as possible due to blood spurting out!!!! Needless to say…I’ve already removed all scissors within the house!

After behaving so well during all of these tests and discussions, Tim was treated to a McDonald’s coffee and muffin (!). Naturally, Max was also extremely well deserving of a baby chino and chips!

Max is truly a little champion....not a whimper during the blood tests...and lying so still during the ECHO, ECG and X-rays (‘Dora the Explorer’ may have contributed a little....). We are truly blessed that despite our little man having already had to go through so much in his short life, he remains so polite and calm with a wonderful sense of humour! His strength is what keeps Tim and I so confident that all will work out well.

So the first big day of many…done!

We got the call!

The phone rang at 6pm last Thursday evening. As soon as I heard “it’s ….from the Royal Children’s Hospital” my heart sank…This was it…after more than 2 years of living in limbo, we were finally here!

I was told we had to be at the hospital by 9am Monday morning for a day of tests and discussions. On Thursday we will have a final meeting with the transplant team to discuss the test results, and on Friday Max is to have a small operation to insert his Hickman line.

After this call, I had a minor emotional episode…to be expected. Shortly after recovering from this, it dawned on me that the next day, Friday, was to be (…..for a while anyway) my last day at work ….another emotional episode eventuated. By the late evening I was totally drained.

We have such mixed feelings about the process: fear of the risks involved with the transplant, but excitement that if successful, our son will be free of this illness.

My maternal paranoia will no longer be justified……. .hmmm

Will update again on Monday.

The Beginning.....

This is the first entry, of many, in which we will share the events leading up to, during and beyond Max's Bone Marrow Transplant, which will cure him of Wiskott Aldrich Syndrome (WAS).

Just a little background...for those who don't know the 'story' already.

Max had been bleeding (from his rear) from 1 week of age. At 2 weeks, upon closer examination of his behind, his paediatrician noticed a large abscess. We were told the only way to fix this was by an operation to 'lay it open'. This involved making an incision, cleaning it out,......and leaving it open to heal from the inside out! The healing process was to take approx 3 weeks.

Daily washing and dressing of my son's 'behind' was not how I had envisioned spending the first few weeks as a new mother, getting to know my son. Luckily I have never been too fussed about blood, guts and all things 'RPA'! Although the doctors were surprised that it took considerably longer than normal for Max’s wound to heal…nothing more was made of it. Only now do we realize that this was the first sign……

A few weeks later at another routine paediatric check-up, I made mention of a tiny red spot on Max’s chest. Without knowing why, I was sent immediately to the emergency department at Monash Medical Centre (MMC). Unbeknownst to me, the Dr feared that this tiny spot was the start of Meningococcal disease. Blood tests cleared Max of this – but instead found an extremely low blood platelet count (Normal: 150K – 450K / Max: 12K – 25K). This means that Max has high risk of serious bleeding episodes – including spontaneous and fatal internal bleeding / brain haemorrhage if his count approaches <10).

Consequently, Max was referred to the Children’s Cancer Centre at MMC. Over the next 6 months Max underwent bone marrow biopsies, platelet transfusions and a plethora of blood tests. Slowly, they began ruling out illness after illness - but still could not confirm why Max had such low platelet counts? By chance one day we met with a different Dr who spotted a small patch of eczema on Max. He mentioned an extremely rare genetic condition called WAS which is manifested by eczema and low platelets.  They took some more blood from Max and sent it to Sydney for genetic testing. The results were to take 4 weeks. The wait was agonising.

In January of 2008, at 7 months of age, Max was officially diagnosed with Wiskott Aldrich Syndrome. It was somewhat of a relief to at last be able to explain Max’s ailments. We have known from that point that Max will eventually require a bone marrow transplant (BMT) to cure him of this condition.

We have known for some time that a 6/6 cord blood match is there waiting for Max. The only thing holding up the process is a bed!!! As there are only 4 beds in the transplant ward – and as Max is not classified as an ‘urgent’ case, we just need to be patient and wait for the phone call. We have been told that Feb/March is what to expect.

Till then we will wait……..