On the 3rd September Harrison underwent a second bone marrow transplant - basically just the second lot of cells frozen away were used as a top up - to try to boost along his first BMT progress. This was cool as I got to see the whole thing - as I missed most of Harrison's first transplant trying to be in two places at once - as that day Ella had the bone marrow harvested and I tried to be with her and Harrison by running around back and forth - so this was a lot calmer. Harrison was quite a stinky boy after this BMT, as the preservative in the stuff STUNK to high heaven! But 3 days later he was stink free and looking good - and thus far has gone well with no signs of infections, transplant problems and other things that can occur when no chemo is done!
As yet I don't really know how well this is going, but... Harrison is now 20 months old and is now 12 weeks post second bone marrow transplant. We find out on 3rd Dec 08 the results of this progress - a month of waiting for blood test results will finally be over :)
Lately things have changed at the home front too. The kids and I have moved to my mum's house and Scott & I have made our separation final. Our home of 4 and a half years is being sold and then everything will be really complete. The kids have really settled in well at my mum's though, so this is encouraging.
I have no pictures to add with this, but promise some shortly.
Harrison saw the neurologist regarding his epilepsy a bit over a month ago, and it was decided that he has some epileptic discharges on his EEG, but the Dr's felt that we could take Harrison slowly off one of his epilepsy medications as they felt the two he takes were no longer necessary. Unfortunately in the process of reducing him down off the medication he started to have seizures, where he lost muscle tone and his head would drop quite severely. So... Back on the medication he went, and now it has been increased further to get these seizures under control. At least we found out about it and it is being controlled now - but the seizures are not good and can make him quite unstable on his feet - he looks a bit bruised and battered on his forehead due to falling on it a few times!! Ah - he is a boy though, after all!
We have recently had a review with Harrison's eye Doctor. Due to Harrison having Retinitis Pigmentosa he has 3-4 monthly reviews to ensure the eyes are still OK. Because Harrison has a turn now in his left eye we have to patch the right eye for 1.5 hours each day in an effort to strengthen the left. This works some days but mostly not as he really fights the patching process.. But in the long run it will help his eyes and that is the main thing - and so we persevere. Harrison's retina's both look quite patchy on the outside (peripheral) section - basically meaning that he is losing his peripheral vision and will slowly develop night blindness. Unfortunately for Harrison his retina degradation is already quite severe. Most people live a normal life til in their 50's when they start to be badly impacted by this disease. Harrison eye's, by comparison to a person who has a family history of retinitis (RP), looks like a person would in their 30's. So his degeneration is expected to be much quicker and the services of Vision Australia will be needed soon. His Dr anticipates him to need a laptop computer for use during primary school to assist him. He also says that because they have no information on the effects of immune deficiency, and bone marrow transplants on people with a retina condition, they have no idea if this will make things worse, or help Harrison's case. Time will basically tell.
In the 18 months since the Dr's diagnosed Harrison with RP, they have noticed a change in the optic nerve- gone from pink to rather white looking because the blood vessels have all thinned. For me I feel this means that he will probably not see adulthood with vision in tact. I have to say that it makes me feel quite sad that his life will not be as full as mine or his brother and sisters lives, and there are days- like today - that I could sit and just cry for what will never be. And I really wish I knew why. Noone can give us that answer though, and so I guess I will just have to settle for I'll never know.
I also wonder at how this will impact on Marlie, Sterling and Ella as they grow up- having to always watch out for their baby brother. Some days I look at them and see how grown up they have been forced to become. But without them life just would not be the same. And Harrison will always have lots of people to love and support him, no matter what happens in the future - and for that I am the most thankful.
And so life goes on, Christmas is approaching and Harrison will hopefully (no infections please !!) will have his first Christmas at home. And as we live next door to a man who has a thousand Christmas lights out already, and all of my kids love the lights, I too am going to take on the Christmas spirit and light up our house too!
Pictures coming next blog . and it won't take me 3 months to do this one I promise.
