This post was originally published on March 25th 2019 via Ellacott’s Ramblings.
Following his month long stay at the Royal National Orthopaedic Hospital, Charlie was finally transferred to the University College Hospital to begin the next stage of his treatment. While we were not looking forward to watching Charlie go through such gruelling treatment, it was a great relief for us to have him at a much more accessible hospital for us and his siblings. This meant shorter journeys to and from UCLH, leaving us in a better position where we could all visit him on a much more regular basis than we had been able to previously.
Our first day was quite relaxing for us, especially after being on such a busy ward for the previous month. Charlie was pleased, as were we, that he had been given his own room, something we had requested because of his additional needs. Charlie was happy to be away from the main hustle and bustle of the ward and the other children and babies. It was definitely a godsend for Charlie to be in a relatively quiet and private room as it gave him a sanctuary when he was feeling really poorly, while allowing us to know he was safe to be able walk away when he was having a meltdown. As the weeks went by, he felt very settled in the room, especially once we had brought a few extra things in, including his Xbox 360, to make him feel at home.
One moment that stood out for me, in particular, from that first day at the hospital was hearing a bell ring. We found out that it was another child that was ringing it to signify the end of their treatment. I could only think what an incredible moment that had to be for the child and their family, especially knowing the child had successfully completed treatment for cancer. It became a moment that we have reminded Charlie of as he went through his own treatment in hopes that it was give him something to focus on. The fact that we witnessed the end of one child’s journey, just as Charlie was beginning his own, was certainly a special and positive way to begin his stay at UCLH. The good news is, that as I write this, Charlie is on the verge of having his moment of being able to ring the bell to signify the end of his own treatment.
The first couple weeks at UCLH were probably the most hectic and overwhelming for all of us. As Charlie began to settle in and get to know the nurses who would be caring for him throughout his stay, we also had many visits from medical professionals from different departments – Oncology, Radiotherapy, Paediatricians, Physiotherapy, Occupational Therapy to name just a few – who had come to meet Charlie and explain to us about their part of the plan for his treatment and recovery. It was certainly a lot for us to take in and to understand, especially as I don’t think we truly realised just how many people would be involved in his care. There were certainly times when I wanted to question some of their choices or ideas, and I did so when necessary, but I knew I had to trust their plan to treat Charlie successfully and give him the opportunity to grow up and enjoy his life, even if he would gain some limitations to what he could do. As most of them came to learn, however, was Charlie needed to understand the what, where, when, why and how of his treatment or he would refuse to allow them to do anything he needed done. As any parent who has had a child in hospital for a substantial amount of time, communication is a key aspect and we were certainly lucky that the team communicated with us and Charlie, making our stay and choices much more easier
Charlie’s stay at UCLH was certainly a lot more busy and structured than it had been during his month-long stay at RNOH. With so many different departments coming together as part of the team that was treating him, the weekdays generally felt non-stop. Most of it was worked around his feeds, due to the fact that the decision had been made to place an NG Tube to make sure he was receiving enough nutrients and calories, something that would be crucial and necessary while he was having chemotherapy. Admittedly, his feeding plan seemed to be constantly changing as Charlie would struggle to eat solid foods alongside the feeds or would feel/be sick. The schedule, amount and rate all seemed to be trial and error, but we did get there in the end.
Chemotherapy is probably one of the worst treatments any person can ever go through and to watch my own child go through it was incredibly difficult, especially when there was nothing I could do but be there for him. I am proud of Charlie for how well he handled it, especially as the side effects didn’t appear to be as severe as they could have been. What made me proudest, however, was the way he just accepted (and helped along) his hair falling out. He rarely wore his bandanas, in the end, accepting and loving his bald head. I think he felt that the bandanas made it much more obvious that he was a cancer patient when he did wear them, so, for him, it just seemed easier not to wear them. Amazingly, Charlie did not need to have as many rounds of chemotherapy as we had been advised he would need, with him just having three gentle 10 minute rounds, one 48 hour round and one week of intense chemo. Charlie, it seems, was one of the lucky few and we certainly have so much love and respect for those who need far more rounds of chemotherapy than Charlie ended up having.
Radiotherapy probably seems a lot easier to handle than Chemotherapy, but there is so much more to it than just lying still for a few minutes while your body is blasted with radiation. The preparation for it is probably the worst part of the whole process as there is much to be done before they can even contemplate beginning radiotherapy. The day Charlie went down to the department for his part in the preparations was really hard on everyone as Charlie was extremely unsettled. The team, somehow, were amazingly patient with him as they worked to create the mould that would be used to make sure he was laying in the correct position each time, while helping him remain still and comfortable. They were also extremely apologetic as they marked his chest with three permanent dots (yes, he does essentially have tattoos) so they had markers to help with the precision of the radiation. After all the preparations, and once he had settled into the daily routine, Charlie was an absolute superstar during his sessions. He was so good that we were told that he was, in fact, showing up some of the adults being treated – adults you would think would know better than to delay their own sessions, and others, all because they couldn’t stay still long enough. Charlie ended up finishing his course of Radiotherapy a couple of sessions earlier than planned as the skin on his back had become quite irritated and was at a high risk of breaking down.
One of the most positive parts of his stay at UCLH was his Physiotherapy and Occupational Therapy sessions. Having been stuck in his bed from the moment he’d had his operation, unable to move around thanks to a chest tube, there was a big push to get Charlie up and about. The difference between when he was admitted to when he was discharged at the beginning of July was absolutely astounding, and it was all thanks to his incredible Physio and OT, Abu and Charlotte. Charlie quickly bonded with them and it certainly impacted on how well he did, especially on the days he didn’t want to even try. He went from a child unable to move much when he arrived towards the end of April to a child who loved his wheelchair and was able to walk small distances with the aid of a walking frame by the beginning of July. This progress also helped towards him being do weekend visits and taking a small trips out of the hospital to get fresh air and go to the shops with me or his Dad. Having that amount of freedom as a result of the wheelchair gave Charlie the boost he needed to work hard towards being discharged and giving him back some kind of independence that had been taken from him after the tumour compress his spine.
At the beginning of July, we got the news we had been waiting for – Charlie was finally able to come home. We were absolutely delighted to have him back at home for longer than two days, even if we had to visit UCLH for check-ups once a week. The plan for his treatment, from then on, was to have chemotherapy every two weeks, alternating between intense chemo over a week and day visits for chemo, beginning at the end of July. Typically, like any good plan, it fell apart after his first round of intense chemo. Charlie became neutropenic and spiked a temperature, which led to him being admitted to Croydon University Hospital for antibiotics. Sadly, a week after being discharged, he was admitted as the skin had broken down on his back and had exposed the rods, leaving at a high risk of infection. He ended up being transferred back to RNOH for another month’s stay and another major surgery.
At the beginning of September, Charlie had surgery to replace the rods in his back and to have plastic surgery to repair and fill out his back to protect his spine. It was much easier to handle this time round as the surgery took placed as scheduled, during the day, with both Jon and I there at the hospital. The surgery was a success and there were no major complications as there had been previously. The only difference was Charlie had been placed in a cast to protect the skin and his back, something he was not impressed with and halted the progress he had made with sitting and walking. The worst part for him, though, was being told he would have to celebrate his birthday in hospital. The funny thing is he ended up having a wonderful day, thanks to having myself, his dad and his siblings there and the nurses buying his presents and a cake as well.
He was so happy when he was told he could home at the beginning of October, even though he would be on antibiotics for next two months. However, the best news came as a result of the two MRI scans he had while at the hospital. The results revealed that the tumour had not even remotely begin to grow back and his Oncologist decided that with that news and to help protect his back and allow it to heal, Charlie would no longer need Chemotherapy. To hear that was liking waking up from an awful nightmare, it finally felt like we were coming to end of this horrific journey. For us, Charlie could begin his recovery and start towards putting this time behind him.
Baking & Tantrums 