12th February-16th March 2013

With 3 kids under 5, a toddler with a rare metabolic disease, a daughter 1 week into school, a busy, thriving, and robust 6 month old, overseeing home renovations and assisting my husband with his physiotherapy practice I actually didn’t think life could get much busier. Luckily  multi tasking, logistics and planning are some of my strengths.

It would be an understatement to say the least that the passed 4 weeks have been the most difficult of my life. But life has a way of throwing curve balls at you and and you just have to catch it fast and run with it as best you can.

At 5:00pm on the 12th of January we received the news that Edward had Acute Lymphoblastic Leukemia. I believe both his Oncology and Metabollic Doctors could not believe that little Edward could be struck by lightning twice as the diseases are totally separate and unrelated. After the initial shock, devastation and questioning as to how much a little guy had to go through this very strange feeling of some type of relief began that it was not his NPC disease progressing. somehow it felt more reassuring that there was somewhere in the vicinity of an 80% cure rate.

When I delivered the news to Isabel she took it on board, thought long and hard about the fact that the doctors had a chance of making this (ALL)  disease “go away” and the next day asked me whether we should look for some different doctors to “help fix”  his other disease (NPC)…..if only that was the case beautiful Isabel and great lateral thinking.

The very next day after the diagnosis the little guy was back in theatre undergoing another marrow biopsy, lumbar puncture, chemotherapy and a central line placed into his main artery as an access point to give blood and receive further chemotherapy. Edward remained in hospital for 12 days whilst he recovered from his insertion of his central line, commenced chemo and we learnt to deal with daily life of a toddler with a central line, commencing chemo and on strong doses of steroids.

The first few days in hospital, Edwards health and happiness picked up a little but by Day 3 or Day 4 we had Ray the Roid Rager on our hands. The effects of the steroids really started to kick in and somewhere along the way he lost his smile, became hungry, grumpy and irritable none of the qualities normally seen by little Edward. One month has passed since his diagnosis and I think I could count on one hand the number of smiles I’ve had from the little guy. He is currently being weaned off the grumpy juice and hopefully his dashing smile may return.

On Day 11 we were discharged from hospital with an irritable, whingeing Captain Grumpy pants, making life at home very difficult and tiring for the entire family. The week following his discharge we were back at the hospital 3 out of the 5 weekdays either for Chemo or a Bone Marrow biopsy and Lumbar Puncture under General anaesthetic. To be very honest these were the days that were easier to get through as we were at the hospital, on a purpose rather than trying to pass the time at home with a poor, sick miserable little guy. One day my Mum came over to look after him for a few hours and he cried almost the entire time I was out. The sad and most difficult thing was that often even when I was there holding him it didn’t even really seem to calm him down.

On the days we would visit the clinic we would discuss this with the doctors and they would reassure us that this was all part of the chemo course and that different kids react differently to the drugs. We pushed through the weekend and his condition worsened with continual assurance that this was the way some kids react to the Chemo-stomach cramping, chronic diarrhea, tired, lethargic and clearly in pain. The week I turned 40 we were at the clinic 4 out 5 days that and finally on the Friday afternoon they admitted him into hospital which is where he had remained for the past 8 days.

This last week has been the toughest by far and whilst I realise this journey was never going to be easy, it’s a much rougher and bumpier road than I ever imagined. All of his symptoms have worsened and at times he has been in excruciating pain despite being on super strong IV pain relief. We’ve had the rapid response team called 5 times for either increased or decreased heart rate and I do believe some doctors are searching further for the potential cause of all this. My maternal instinct also feels this too, though I do hope this is proved to be wrong.

On Friday he had a bone scan to see if there was an infection hiding somewhere in the bones and to be honest I was prepared for some even worse news, but that came back clear. At this current point in time absolutely nothing would surprise me.

Last night in hospital Pete had the worse night he’s ever had with the poor little guy screaming out in pain despite the strong pain relief. This morning he had a chest and stomach ultrasound to see if there was anything going on in there, results are pending.

This afternoon, he’s coming to the party on a lazy Sunday afternoon and is fast asleep on my chest as I write and the calmest he’s been for at least 24 hours. His Jolly Jumbo brother is also snoring his little head off in the pram.


One thought on “12th February-16th March 2013

  1. Good god Ali, my heart sinks reading all what that gorgeous little man that I fell in love with in only one hour is going through, and that you as a family have to go through this horrible nightmare, I am so sorry, thinking of you all xxxx

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