Good evening to you all.
Chiane had her MRI today.
We will need to wait 1 week for the MRI results. We have another meeting at GOSH next week and Monday to discuss the MRI.
We had a meeting today regarding her genes and to be honest, we are no wiser after the meeting, than before the meeting. We have been told that they disagree with the gene report that we have provided and further testing is required on the hMLH1 gene which can take anything from 8 weeks to 10 weeks. If they find any loss of expression in the hMLH1 gene, they need to carry out further tests on the PMS2 gene, which will take a year.
Chiane’s cancer can be back by then, or worse, dead. The NHS is either really under staffed or she has now become 100% research and not priority. We were shocked sitting in the meeting expecting to discuss different options of treatment, only to be told, that they require to test 1 more gene, which will take at least 2 months, and maybe a second gene, pending results of the first gene, which will take a year.
Frustration is an under statement here.
We agreed for them to do further tests as chiane is not required to be there. They have her genes and can continue to do the research. We are not going to wait for the NHS. It’s an aggressive cancer that can resurface in 6 months… There is no time to waste. We will get next week’s MRI results out of the way and then decide which way forward.
Andia and I have already decided to get another 3rd party to re-test her genes….again. This time from an approved laboratories in the states. If the gene report is the same from the company we use in the states, as per out first report… Some hard questions will be asked by us to the health system in the UK. To wait possibly a year is insane…
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.