The Decision is Made…
Good evening to you all
Chiane was at Great Ormond street hospital on Thursday and she is in top form. Her shingles are sorted and is healing well. Latest tests revealed she is SUPER READY.
It was decided yesterday that we come in on Sunday to prep Chiane for high dose Thiotepa.
She is still on Phenytoin and it was discussed yesterday to lower the high doze chemo to reduce toxicity.
We got a phone call today at 3 pm and after some top consultants thought it through, it was decided that she has to be at Great Ormond Street tonight. The risks are too high to give Chiane Thiotepa and for her to be on Phenytoin.
So… She will be wean down/come off Phenytoin in 2 days!!!! WOW!!!!!!!!!
They want her in hospital this weekend – if seizures kick in that they can deal with it and have her ready for chemo on Monday.
We still had 2 more days at home to get ready/pack and do what we got to do…suddenly we had 4 hours to get ready! It was chaos in our house packing etc and we are now leaving to go to GOSH.
It is going to be one heck of a roller coaster ride, but we can not wait longer. We have been working so hard to get Chiane ready.
A lot of people said to us that they would have stopped and would not have continued. I understand their point of view, but if it is your child its not so “clear cut” to make those decisions… It is very easy to say “I would stop if I were you”…Some said “why do you continue?”…
The answer is simple… With a 50/50 % change to get through it… Can we afford not to go through it?
So… We are leaving now and please pray with us… Chiane will come off Phenytoin, seizures are a big question mark and we will start Monday morning with HIGH DOSE Thiotepa…
We apologise for being so quiet the last 3 weeks but hopefully everyone would understand that we were under lots of pressure to make decisions and prep Chiane… We done what we could to get her ready. Now it’s time to go through with it.
Posted on January 13, 2012, in News from Chris and tagged chiane, great ormond street, great ormond street hospital, phenytoin, thiotepa. Bookmark the permalink. Comments Off on The Decision is Made….