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How do you measure a priceless gift

The day came, day zero. The day where Jude’s life of being CGD symptom free was to begin, if all goes well. The day is a little misleading, there is still a long way to go, a very long way. It is not like popping a magic pill that provides a cure for all diseases, this was the day that Jude received the amazing gift from a stranger, a world away. The day started off like any normal date stuck on the ward, in an isolation room. Jude’s appetite was gradually declining and there was an obvious concern on the morning visit from the team, though nothing to cause a dramatic change in the daily routine. However, this wasn’t the first thing on our minds, what we really wanted to know was the current status of the bloods that were taken less than 24hours ago on the other side of the world. Jude’s new marrow was currently sitting in the lab a few hundred metres away getting processed and any ‘extras’ were getting removed. This was cause for excitement. The knowledge that this life changing blood was so close was enough to change the mood of the room. It was also enough to lure the both of us to the room as Nan looked after Levi for the day.

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Shortly after 12, Jude had finished his lunch when the bone marrow arrived. For those that don’t know what this is like, imagine a thick blood like substance, not much, and in this case it was around 135ml, but that is enough to make the world of difference to Jude. The bag was hung after posing for a series of photos, by itself and with Jude (however, Jude didn’t get the chance to touch the bag). With bag hung, machine hooked up, the marrow flowed down the line and into our beautiful little boy, you could almost visualise the marrow flowing into his veins and taking up residence in the free accommodation that the 10 days of conditional chemotherapy had made available. The actual transplant was maybe a little more exciting for mum and dad than it was for Jude as we watched every little drop trickle into the line, this was, literally the life blood that is going to change, not only Jude’s life but ours as well. An hour later, it was all over, all cards were on the table so to speak. Our wonderful donors marrow was now flowing freely through Jude’s veins and if all goes well, was following the road signs to Jude’s now, vacant marrow.

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There was nothing left for us to do, but wait and maintain a safe, sterile environment for Jude. The easy part was over. Getting Jude to this point was by far the easiest part of the road ahead. The countless hours that we had laid awake at night worrying if we were actually going to make it to this point with the knowledge that even a simple infection could have thrown a spanner in the works had all paid off. Though the road hadn’t always been smooth sailing with the leg infection resulting in countless consultations with our transplant team to discuss the feasibility of proceeding with the transplant or opting to delay the date. From this point onwards, the power of positive thinking, hope and the trust that we place on our transplant team is all we can do. Jude’s part in all of this is probably the most complex and difficult. It will be up to his body to ensure that this precious and priceless gift takes up residence. The remainder of the afternoon entailed with the two of us managing to spend some much needed time with Jude and absorb the enormity of what had just occurred. To say that it was an emotional date would be an understatement, Jude however, was oblivious to what had happened and decided to put on a show for the nurses by showing his dimples in an attempt to lure them in to his web of cuteness. He was successful on all counts.

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One reply on “How do you measure a priceless gift”

words seem so miniscule in an act of kindness so great. Your whole family are an inspirationn. one can not read Jude’s journey without tears trickling down the cheeks and realising how small our own troubles are. xx

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