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Tuesday, April 19, 2011

Oscar's doing ok thank you

Oscar's white cells have gone up yet again so the Dr's are increasing his chemo again. He is either really resistant to the chemo or hiding an infection of some sort they think. They have given us the ok to go on our holiday despite Oscar having a nasty head cold and have given us a referral for the hospital closest to Nelsons Bay in case he gets a temperature. They have notified the hospital about Oscar and his condition as well (boy, it sure has become complicated to get away for a few days!!)

The hospital was full on chaos in the lead up to Easter so it was very long day but, touch wood, we are hoping to get out of Sydney on Friday. We have all been sick this week so I am hoping we all start to get better so we can enjoy our long awaited escape from Sydney for a few days - and maybe even get a full nights sleep.

In the SMH on Saturday I read an article about how leading stem cell researchers from Australia and the US met up to kickstart some collaborative projects, sharing funding and taking applications for projects such as a biology program that would increase understanding of blood diseases and develop new treatments for them. In a perfect world the many cell samples Oscar has donated each time he had a bone marrow biopsy will be used by one of these scientists around the world to help some other sufferers of blood disease. And in a utopian world Oscar's pain and samples will somehow contribute to a cure. Stem cell research gives us hope that we might find such a cure.

Back in this moment of now, in this reality, we are grateful for each day and doing the best we can. We are also excited about getting away and breathing some new air for the first time since all this trauma and just reminding ourselves of the freedom and peace of the ocean.

Have a great Easter everyone.

Thursday, April 14, 2011

Blood results Friday 8th April

I haven't been able to update you as my computer has been playing up so sorry for the delay. We went to Clinic last Friday 8th April for our usual visit. Oscar is used to going into the room where they take bloods full of trust and excitement to see the nurses he knows and get a sticker as reward. He is incredibly shocked when they inflict pain by putting a needle in his arm. He looks very confused at them as he screams, like they have changed the rules on him, which they have. It only lasts for a split second, though, and then he stops mid-scream and says, "Oscar sticker". All is right with the world with a couple of stickers.

His blood results were confusing. We had doubled the dose of chemo since our last visit because his white cells had been too high. They aim to keep them at a certain level during maintenance treatment. This week they were even higher, despite the increase in chemo. I said to our Dr, "That's weird" and she said, "It is weird". This didn't make me feel any better. His white cells have never been this high since starting treatment. When he was diagnosed they were very high, the highest of any of the other kids I know who have leukemia so anything to do with high white cells scares the hell out of me.

Having said that, the Dr didn't freak out either. It was very hard to get any real read from her about what it meant but she said we will see how it is next time. So we wait......

You would think after 10 months of this waiting game that it would get easier but it doesn't. I remember one of the mum's who was 4 years ahead of us on the journey told me it never gets easier but you get better at dealing with how hard it is. You find distractions. So that is what I am trying to do - keep distracted, stay positive and I absolutely refuse to mention the 'r' word because I do not want to give it any power.

Waiting for bloods is a dance we will be doing every fortnight for the next two years and then every other month for five years after that. We aim to do it with a smile and a lot of gratitude in our hearts. That is not to say that we will always achieve this goal but it is important to remember that we are so, so, so lucky and we are reminded of that each time we visit clinic and see so many little kids going through such a hard time.

Take care and thanks for checking in on us. We know it is a long journey and we are grateful for your support.