Blog Jude's Blog Levi's Blog

Breaking the news barrier….

Monday greeted us like a bit of a sledge hammer on the news front. Levi initially didn’t want to have anything to do with a new week of getting poked and probed let alone more news relating to his BMT, so he seemed to wrap himself up a little tighter in the towel of denial.
IMG_3060However, after hearing the news that one of the tests to determine what percentage of the donor marrow had actually taken up residence, he warmed up to the week. The doctors couldn’t restrain themselves to let us know that the results indicate that one of the blood tests had determined that 100% of Levi’s recovering marrow was actually donor tissue. Needless to say, that this was welcome news to the whole family as there is a real risk that even with all of the medications, Levi’s body could still reject the new bone marrow. However, the silver lining to this whole cloud is that the donor marrow has taken up residence, and we are hoping that it will be a permanent, infection free residence.Needless to say, this news was amazing, however we knew there was more, as the doctor was beginning to act like a fat kid in a candy store in that she was jumping up and down, she literally burst the joy bubble in the room and provided an even bigger one when we heard the words, “Levi’s neutrophil are operating within the normal range and we can confirm that with the new marrow, he is free of the symptoms of CGD”. This truly amazing news was followed up by the overburdening small print in that with any infection, be it viral (in the form of the common cold etc), bacterial, or fungal could easily regress Levi’s transplant resulting in the rejection of the donor marrow and revert his CGD.
IMG_3062Taking all of the news to date, we then got a further piece of news as we were also told that today was to be our discharge day, so no more nurses on standby with any detection of infection, temperatures etc it would result in a swift visit to emergency. It also means that we now start our regular, Monday, Wednesday and Friday visits to day stay at the hospital as out-patients. With discharge seemingly imminent we began the many trips down to the apartment to empty our isolation room. However, for anyone that has ever experienced a hospital discharge they will understand, having been informed of discharge at 9am, we finally left the ward at 4pm. With mum and dad extremely hungry, having no lunch, Levi attempted to ensure our blood pressure and heart rates remained monitored by performing regular observations on us. Could be a new career for the little guy.

IMG_3069 IMG_3072

With everything that happened, we are so thankful to the medical personal that have worked so hard to get the boys to where they are, the research that has gone in to making this possible, and the difference that this transplant will make to Levi in the future, and Jude when he has to follow in his brothers footsteps. With the knowledge that we still have a long road ahead of us for Levi before we can be sure that this transplant will hold and he will be forever free of the symptoms of CGD and that of Jude’s transplant, I am not sure if my finger nails will cope and am sure that with everyday that passes, I am getting more “distinguished” with grey hair. But as we settled in for the night, I am sure both boys dream of playing in the leaves and enjoy growing their own vegetables in the garden; well maybe that is what I like to think. Maybe Levi was dreaming of ambulances, Ant & Belle and Jude was simply dreaming of milk.

IMG_3085 IMG_3087

5 replies on “Breaking the news barrier….”

Awesome news all around. Donor marrow 100%, so far no GVHD, and discharge. What a rough road to get here, but what a fabulous outcome!! All fingers and toes crossed that it’s all uphill from here.

Such absolutely fabulous news. It makes it all worthwhile. Love you guys and can’t wait to see your dream realised Nate x

Absolutely amazing news! Your stength and determination has been an inspiration. So happy for you guys 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *