June 2009

Sorry I haven't been writing for some time, been quite busy with Christian having his intensive chemo therapy and also staying in hospital for some time.

We are so happy because Christian has completed his last intensive chemo block. Yeehhhh!!!!!!

He had the usual side effects like constipation, which was very bad. He still has problems with his bowels, but hopefully that will get better soon.
He also was on a high dose of steroids and was restless at nights unable to sleep, so we had many sleepless nights.
We did end up in hospital twice ( as we expected anyway). First was for 4 days, just high temperature, he had to have antibiotics, although they didn't find anything.
Second time we stayed for a week and he had line infection ( as u all may know he has a line under his skin that gos down from his neck to main artery and is connected to a port).

The bug he had in his line ( can't remember the name) as we were told by the doctors is the one that they usually worry about and can make them very unwell and doesn't respond to the treatment as well as other bugs.

Luckily after week of antibiotics his infection was gone.

He also had 2 blood transfusions and one platelet transfusion.

He lost all his hair, eyelashes and eyebrows once again. We still have problem with his eating or shall i say not eating. However he hasn't lost any weight, quite the opposite, he is not skinny at all, and is gaining weight steadily. Must be the air he breath :)))

I can't explain how good it feels when you know that the worst part of the treatment is over!!! No more long chemo ( some of them go in his vein on the drip for 4 hours) no more chemo in my fridge ( that's for our community nurses, when they give it at home). So yes it feels like we can start seeing the light at the end of a very long tunnel.

Of course the real celebration will be when all of his treatment will be over, because he still got another 2 years or more to go. But it will not be as intensive and will not have so many nasty side effects and he should be back to him normal self.
And I cant wait for his curls to grow back, not that it is important, but would be nice when he starts nursery in September, that he will look and hopefully feel no different than other children.

Although I know all this treatment has changed him a lot, at the end of the day he has had one year of hospitals , painful treatments, and it is as if one year of his childhood has been lost.
But on the other hand he is only 3 and probably will not remember anything, so that is a good thing.

We hope that starting nursery ( only for couple off hours a day) will give him back his confidence, make friends, and do things that a child his age should be doing.

I must say I am very apprehensive of sending him to nursery, just due to the fact that his immunsisstem will not be as strong as it should be , therefore high risks off infections and hospital admissions, but I guess we have to just see how it goes and if he does get ill all the time, than I will have to take him out of the nursery.

We can't believe it will be a year ( on 19Th of June) since I took him to hospital and the dreadful diagnoses that none of us could ever imagine. It has been the most difficult year of our lives, but I think it has made us stronger and positive attitude and all the support has made the journey less painful.

So thank you all for all support and thank you for caring about our little Christian.

Just a quick update on what is happening know. Christian was supposed to start his Maintenance chemo this Wednesday ( 17Th) but was cancelled due to his blood counts being too low so we will have to wait till next week and see if they will improve.

Christian himself is feeling not too bad, he hasn't had chemo for couple of weeks so the side effects are wearing off. His platelets are quite low at the moment and he is bruising easily, even crying makes him bruise. His hemoglobin is also on the low side, but apart for being pale he is usually still quite active. Our nurse is coming on Friday to take his bloods just to see if he needs any blood or platelet transfusions.

So fingers crossed his bloods will improve and we can start next treatment next week.
I will keep you updated.

P.S I am doing the race on 4Th of July and haven't reached my target yet so please if you can sponsor me, thank you. xxx www.raceforlifesponsorme.org/ilzejacovides