Ghazali Siddiqui Dear friends, apologies for not updating you all on Rayaan’s progress in the last few weeks but it’s been a very busy couple of months for us as a family. Since the end of September Rayaan has had a few procedures (minor operations) to prepare him for transplant. His PICC line (intravenous central line) was changed to a double lumen Hickman line which is more suitable for transplant patients. He’s also had a gastrostomy (also known as a “Peg”) fitted to his stomach as this will help with feeding should he lose his appetite during the transplant phase. Finally, just this Friday (one day before his birthday!), he had to have a bone marrow harvest, which is effectively the same procedure that a child donor would have to go through to donate their bone marrow; Rayaan has had a harvest as a precaution in case his transplant does not go according to plan, in which case it can be reversed; Inshallah (God willing), it will be successful. Thankfully Rayaan has been well during this period, which has been nice for us as a family to enjoy some sense of normality. We’ve also had Eid and his 7th Birthday to celebrate in that time. We are now mentally and spiritually preparing ourselves for the transplant itself which will be the most challenging phase of his treatment so far. By now you probably know that as Rayaan’s father, the plan is for me to be the donor; we were unsuccessful in finding a full matched unrelated donor. The whole transplant phase starts for us this coming Tuesday 5 November, and we are scheduled to be at GOS hospital for at least 8 weeks during this time. The process is hugely complicated, but here’s a general/condensed plan: Week 1 – Conditioning phase (Rayaan’s immune system is wiped clean with Chemotherapy). Weeks 2 – Dad donates stem cells through peripheral blood. Rayaan receives stem cells. Weeks 3 to 5 – We wait for the new stem cells to graft (Rayaan’s body to accept them as his own). Week 6 onwards – Wait for blood count recovery to ensure Rayaan is well enough to go home. Once conditioning has taken place in week 1, and until about week 6, Rayaan will have little or no immunity to fight against even the most commonest of infections, he will be even more susceptible than he is currently. This coupled with hoping for the stem cells to graft means it will be a very crucial period for us. We wanted to convey a special message of thanks to all our Friends and Supporters for all their help in the donor registrations; I understand from Delete Blood Cancer, that we managed to register close to 3,000 people, which is a fantastic result ! Family and close friends have been great during this period; you all know the individual and collective contributions you have made to us in our time of need, so thank you to you all. A special mention to our Hajj companions Adnan Harouf and Rizwana Jamil who (together with their family) must have recruited at least 1,000 of the registered donors with various drives arranged in East London and Birmingham. But we have also been totally taken aback by the support for our campaign shown by complete strangers (although you certainly aren’t that any more!); these people also deserve a special mention. Saima Ashraf for organising the Blackburn drives and the Rahat Fateh Ali Khan concert drives; Bushra Chaudhry was also very helpful at the concert drives. Najma Timms for organising a number of mosque drives in the Yorkshire towns. Kuldeep Dusanj for organising the Medway Towns Gurdwara drive and also for the introduction to Shekhar Bhatia of the Evening Standard. Thanks to everyone for supporting us on this page. Inshallah there will be good news to report back soon. In the meantime, please keep us at the forefront of your thoughts and prayers over the coming weeks. Ghazali and Navida
Posted on: Sun, 03 Nov 2013 21:25:21 +0000
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