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……..