Happy Hogmanay to everyone and a huge huge thankyou for your love support and encouragement over the last 4 and a bit Months. Mum here as Jaks sleeping after his trip to theatre this morning to replace his Hickman line which was in too far. Delighted to say the procedure went well and as always huge thanks to the skill and care of all surgeons and theatre staff involved:) we are Hoping to get home later Today:) I also wanted to update you all on the plan for next few weeks. We are excited but obviously anxious about the plans for Jaks stem cell transplant which Godwilling is planned to take place 30th January as the donor cant do before then. I cannot express how utterly grateful I am to this donor who is a 10/10 match for Jak- I think people who selflessly give Of their time and blood and bone marrow to help complete strangers need to be recognised and acknowledged far more- so Im starting my own New Years Honours list and want to grant every single blood donor and bone marrow donor the highest accolade possible. We will never fully be able to repay Jaks donor personally but we will certainly try to raise awareness in order that through Jaks transplant others may feel led to put their name On the register or go and give Blood or even if you cant do either of these maybe do a fundraiser of some sort for Anthony Nolan or Blood transfusion service. Next week is a busy One when we go to the Beatson to get measured etc for Jaks TBI (total body irradiation) booked for week of 19 th January on Tuesday, them back to Edinburgh Wednesday for another gfr test and heart scan in prep for transplant. He had his Lung function test last Monday in Yorkhill and delighted he passed that given how bad his lungs have been:) We are also waiting on confirmation that he will probably get a small dose of chemo to keep things away between now and when conditioning starts. Conditioning consists of four days whole Body Radiotherapy, 3 Days strong chemo and a drug called campa ( I think) which kills his lymphocytes in order to make way for the donors ones. Then as said the stem cells will be Godwilling transplanted on 30th January. Thereafter Jak will remain in isolation in a positive flow room until his counts recover 3-4 weeks later. There are huge Risks involved in this but our feeling is that Jak has come this far and we will deal with anything as and when we have to. We are just so very grateful to Jaks amazing doctors in Edinburgh who have got him this far and to his equally amazing Drs we will be working with in Glasgow- we are truly Blessed to have such fantastic Medical staff and facilities available to us. Ill leave you all in peace now Ive written a story haha, but from the bottom of Jak , Aimie and my hearts id like to wish each and every one of you good health and happiness for 2015 and always:) Im sure Jak will post his own message tomorrow:) thankyou for sharing our journey and we look forward to moving forward together in 2015 and Godwilling to good health for my amazing precious boy :) Happy New Year:) xxx
Posted on: Wed, 31 Dec 2014 13:48:52 +0000
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