#ViJuFooIt is hard to believe that nearly 1 year ago, Levi was preparing for his Bone Marrow Transplant. The time has flown by and by some coincidence, I have managed to take a very similar photo of both boys at the same stage in their treatment schedule.
It is strange, no matter where you are in the world, some things never change, the sun will rise, the sun will set, we laugh, we cry and, we grow older. Today was no different, with yesterday being such a significant day, today was no different, today Jayde was to be another year older. Some have commented that they could think of nowhere worse to celebrate a birthday, a hospital, an isolation room, whilst your child goes through one of the worst moments in their life. But, take a moment to put it into perspective. You are with your child, they have received the greatest gift in their life, a gift that has the potential to change the complete course of their lives from that of living in a bubble to that of a relatively normal existence. I would counter that it would be a no brainer, a mother would always opt to be with what is most precious to them, and for Jayde it was no different. Even with a leave pass the night before, she turned down my offer, which was a relief as I had no idea when I would have a chance to bake her a Red Velvet cake with extra pink butter icing. I did feel particularly bad that I wouldn’t get the opportunity to sing her happy birthday in the morning, but a quick phone call to the night nurse team quickly fixed that up. Jayde was woken in the morning to a team of nurses, holding an iPhone with a candle burning and a chocolate cup cake singing happy birthday. Not long after this, she received a call from Levi and myself singing a very poor rendition of happy birthday that made the Marilyn Monroe version sounding like Mariah Carey.
We both managed to get a leave pass as Angela took the Jude shift and Nan took the Levi shift. This was some much needed adult time away from the ward which we both needed. We had initially thought that we would make our way to one of the local places, but after a quick discussion, this was quickly ruled out with Jayde wanting to go somewhere that we would not normally go. So after a quick brainstorm, it was off to this little cafe just off the Eastern Distributor that we had past so frequently on our trips to and from the hospital. There wasn’t a big gluten free selection, so I had to settle for a bit of a salad, well one salad to be blunt. It was either that or a cake, which didn’t really sell itself as a lunch. To make matters a little more concerning, it was a kale salad, but, as the gentleman that I am, I decided to take one for the team and ordered my (protein free) kale salad and Jayde ordered a roast pumpkin salad. All I can say was wow, it was a beautiful lunch and the only complaint was that there was not enough salad.
After a wonderful lunch, it was time to make our way home, well back to the hospital, but I would be lying if I admitted that the thought of grabbing the boys and running back to our real home didn’t cross our minds. So with the relief sitters relieved, it was back to our normality with me taking the night shift and Jayde taking a couple of much needed nights to spend in the apartment. At present, both boys are doing amazing, we are continually getting told by our team that Jude is doing fantastic on paper. Though, we are just waiting for the day that the dreaded ‘but’ is going to pop up in conversation on the morning rounds. The little guy is constantly putting on a show for the nurses, doctors and mum and dad, but what truly makes his day, is when Levi visits. The look on his face is nothing short of elation. We now have to maintain the isolation of Levi to ensure that these visits can continue.
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.
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.
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.
Mum and Dad are always telling me that I shouldn’t put things in my mouth and up my nose, though I don’t think the nurses know the rules. As today the nurses put a tube up my nose and stuck it to my face. If that wasn’t bad enough, it took 8 attempts to get this new accessory!!
Lucky I’m a very forgiving person.
What a difference 24 hours makes!!
It would appear that we have turned a corner… from our sad unhappy little man of the past few days, we have silly, crazy, happy Jude back!! I can’t tell you how much we have missed him!! Our little showman is back to entertaining all who enter the room and is very much back to being like the puppy in the pet shop window, desperate to win you over with his antics.
Though with a better mood it doesn’t mean we have been drama free, with Jude’s central line deciding to give us a scare. Both of Jude’s lumen’s decided to get harder to draw back on, which meant that when they were trying to take his daily bloods for testing, his blood wasn’t flowing as freely as it should. The white lumen had a visible clot that could be seen in the line and his red lumen had his blood clotting as it was coming out of the line. This can be common, so we were told. The first step was to run some anti-clotting agents down the line called heparin. Unfortunately they didn’t do the trick, so we had to call for something a little harder hitting and a little riskier called urokinase. The positive about having urokinase in the lines was that Jude had to be unplugged from his machines so that the anti coagulant could just sit in the lines and do their thing. So Jude was unplugged and free to roam his room for 3 hours!! He made sure he took full advantage of the situation, and explored all those things that he had been looking at though unable to touch. The good news is that it worked and we now have a full functioning central line again.
As we entered our second day of Chemo Jude seemed a little more prepared for the task at hand. However, seeing the nurses bring in nearly every recovery apparatus before they start treatment is always a little unnerving for a parent. For any one that has a pharmaceutical background, the troublesome drug that they were worried about is called Alemtuzumab. With the knowledge that this drug is commonly used in the treatment of chronic lymphocytic leukemia it’s no wonder Jude was having a bit of a reaction to it. So with the hatches battened down, it was off for round two. An hour and 30 minutes into the 2 hour treatment he had another reaction, not as sever as the last, though enough for them to pause the treatment until they were happy he was stable enough to continue. His skin went mottled, blood pressure was high and lower oxygen saturation levels were a concern. Since his first round of chemo Jude was holding an additional kilo of fluid!! With the additional fluid onboard this also was making him work just that little bit harder, so they gave him some oxygen over the next 12 hours to help him along. Thankfully that was as exciting as it got.
After his treatment, it obviously took a lot out of him as he spent a large portion of the afternoon catching up on some much needed rest.This gave us a few moments to catch up on our thoughts and re-center ourselves after a very long, and stressful week. It also gave us a chance to take stock of what Jude was eating and realise the inevitable trend that follows every Chemo treatment. The loss of appetite is something that is manageable, and one has to get past the sheer wastage of food that follows as the taste buds begin to get destroyed and things that they know, no longer taste like they used to. I still remember, giving Levi some of his favourite foods during his transplant, and the sheer look of terror as he looked me in the eye and may have well accused me of feeding him steamed brussel sprouts.
Meanwhile back at the apartment…. Levi managed to get a bath in and do the dinner dishes (naked chef style) before getting ready for bed, then it was up to the ward to give Mum & Jude a quick hug and a kiss good night before calling it a day.
