Update on my son. He has had a really rough time with the last lot of treatment this time. Made worse with my own infection and not being there for him, only in spirit!
They have now allowed him home with regular visits to his local hospital for tests and line care. He was called into the Heartlands hospital to talk over the transplanting procedures to be given some good news that they have found Two compatible donors one in the UK and one in the US. The UK Donor is a woman and matches his weight better so they will choose her first.
All looking great but it seems that they may have to do radio therapy to make sure he is flat and has no leukaemia cells. The person is away when they would of done this so they may have to postpone until they are back! But fingers crossed it may be some time after January ish?
It will still be some months after all this before we will know it has worked and he will be fit enough for work.
Fingers Crossed!
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That is wonderful news but now you and he must be even stronger and more careful.
The transplantation dose of chemo is even stronger than anything he has had to date. When they say FLAT they mean they are going to kill all the fast multiplying cells, good or bad.
They take him to the very edge and then use the replacement healthy stem cells to kick start his system again. (A bit like stalling a plane in full flight than starting it up again)
They will know fairly quickly if it takes ( remission) but as to whether the cells continue to reproduce correctly ( continue in remission) is the unknown factor combined with how his body accepts / handles the "foreign cells" hence the transplantation drugs.
He must take this time to relax and build up his strength and weight again for the next fight. !
You are so right he has lost 2 stone so far but he has been given the food no list and basically been told to eat everything else in excess to get some weight on. Cheese on everything
what a hard time for your family. Now you have been given some hope, I guess they wouldn't do it if there wasn't a good chance of success. Do wish you all the very best, and look forward to the day when you tell us your son is on the mend. Keep strong, we are all praying for you. Love Iris x
AML is not a good thing to get but it is one of the treatable ones. With him having the kit gene has added more long term issues but it is going the right way for him.
Thank you as always for sharing your son's progress, and yours as well. It makes it easier to focus our thoughts and prayers on both of you and your family. I know how hard it is living with a loved one undergoing chemo and wish you all the strength it needs to fight though this. You are always in our thoughts Offcut. Regards Rib
All the good news together Offcut - that's fantastic - it will be wonderful for you to be able to see him soon too. Fingers crossed the tests all come back fine and the transplant can go ahead. Am really so very happy for you (Christmas come early eh!). xx
here is a little info and it is good re transplant. I hope it helps and re assures people.
New technique bodes well for lung transplant success rate
•Nick Lavars
•September 20, 2015
The EVLP-treated lungs showed little signs of rejection, while the lungs transplanted without the treatment all showed signs of severe rejection (Credit: University of Manchester)
Our bodies have developed a particularly unforgiving immune response when a threat is posed to our lungs. This is great for warding off illness, though is something of a double-edged sword regarding transplants, with the recipient's body often perceiving the incoming organ as a threat and seeking to destroy it. But a new approach known as ex-vivo lung perfusion (EVLP) promises to boost the success rate of such procedures, by both repairing unhealthy donor lungs that wouldn't otherwise make the grade and reducing the chances of rejection once it is implanted.
One of the main culprits behind the body's aversion to new lungs are the donor's white blood cells, known as leukocytes. Once the organ is implanted, these migrate into the recipient's body where the immune system interprets them as dangerous and sets about attacking the organ, something known as acute rejection. The current approach to countering this is immunosuppression, where the patient receives lifelong drug treatment to inhibit activity of the immune system. The problem is that this invites a whole other set of risks, such as heightened susceptibility to infections and cancer.
EVLP is an experimental technique that is currently being pursued by researchers around the world as a means of improving availability of lung transplantation therapy. It sees the donor's lungs kept alive outside the body in a plastic dome for three to four hours, where they receive a supply of blood and nutrients. This can reverse injuries, remove excess lung water and ultimately make damaged lungs more suitable for transplantation.
A team of researchers from the University of Manchester and Sweden's University of Lund carried out a study involving the transplantation of pig's lungs. Some were subjected to EVLP treatment, which in this case also involved the removal of leukocytes, while others where transplanted without the treatment as per normal. The recipients were then monitored for 24 hours.
The EVLP-treated lungs showed little signs of rejection, while the lungs transplanted without the treatment all showed signs of severe rejection. Because the lungs were only monitored for 24 hours, the scientists are not yet clear on the long term effects of the approach, but say that even delay in the onset of acute rejection would be advantageous in facilitating more successful transplants. They are also hopeful that the approach may complement new immunosuppressive drugs under development.
"Aside from the benefits shown in this study, it is possible that EVLP could be used to deliver drugs before the lung is implanted so that the patient’s immune system does not recognize the transplanted organ as harmful," says the University of Manchester's Dr James Fildes, leader of the study. "EVLP opens up new possibilities in one of the most problematic areas of surgery."
The research findings were published in the American Journal of Transplantation.
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Oxygen. Re infection. 
Hi, I am a mum to 3 beautiful children, one of which has had croup since he was 9 months old and has been hospitalized with 4 times, feb 12
