This post was originally published on May 27th 2018 via Ellacott’s Ramblings.
The plan, put in place by Charlie’s Spinal Surgeon, was for the tumour to be removed in surgery on March 29th. Unfortunately, just four days after I originally posted to my blog about Charlie’s illness, things changed so dramatically that my son was rushed to the Royal National Orthopaedic Hospital for emergency surgery.
The night before, Charlie began to complain about his legs not working properly. By the time we woke up, the following morning, he could no longer move or feel them. Admittedly, I had hoped some sleep would help him, but sadly, Charlie was in too much pain to get a decent amount of sleep and the medication we had been giving him appeared to be no longer working as well as it had been. It was honestly a shock to everyone, his surgical team included, that his condition had worsened much quicker than anyone had expected or could have predicted.
Things moved quickly from the moment we arrived at RNOH. Charlie was checked over by the doctors and nurses before being sent for an MRI. The moment we arrived back at the ward, the nurses started prepping him for surgery. By 7:30pm, Charlie was in theatre to have his tumour removed, just four hours after we arrived at the hospital.
I suddenly found myself at a loss as what to do for the next several hours. It didn’t help that I could feel my anxiety worsening, with nothing and no one to distract me from what was currently happening to my son. With the unexpected emergency surgery, I had been left in a position I had planned to avoid – me, all alone at the hospital with no one to support me. It didn’t help that I had no actual idea of when Charlie would be out of surgery, just that it wouldn’t be until the early hours of the following day that he would be.
I felt lost, drained and anxious. I wanted my husband to be by my side, like he should have been, but that just wasn’t a possibility. I felt unable to concentrate on anything I had brought with me to do as I waited. In the end, the only thing I could do was to take a nap in the day room on the ward, knowing I would need my strength in the days to come.
My saving grace came in the unexpected form of my friend, Hayley, who I hadn’t seen in a few years. We had remained in touch via social media, but our lives had become so busy that it was hard to make the time to see one another. However, Hayley is one of those people where you can just pick up the friendship from where you last left off. It is certainly a sign of a true friend when they decide to drive from South London, late at night, just to come and support you through hours of anxious waiting. I am so unbelievably grateful to Hayley for doing what she did as spending the time catching up with her meant I was distracted from thinking too much about Charlie while he was in surgery.
I cannot tell you just how happy and relieved I was when a phone call for me, from one of the surgical team, came through to the ward at around 2am. The news was much better than I had been hoping for – surgery had gone much better than expected with the team being able to completely remove the tumour, with clean margins, while also managing to avoid any damage to his spinal cord. Yes, he still had a significant amount of treatment and recovery ahead of him, and yes, there was still no guarantee as to whether he would regain full use of legs back, but the news was enough for the weight I had been feeling on my shoulders to lift. It was enough for me to be able to relax, leaving me to finally feel the exhaustion from the long day I’d had and the consistent lack of sleep in the week leading up to that point.
Charlie’s recovery began barely hours after he came round from the anesthetic with a physiotherapist visiting to begin supporting him. Charlie found the sheer number of people involved in his care and recovery rather overwhelming at times, especially when there were multiple people in his room or by his bed, discussing his condition as though he wasn’t there. It became increasingly clear over the following days that Charlie wanted his voice to be heard and that he wanted to be spoken to. The doctors and nurses also quickly realised that he would respond better to them and be more receptive to procedures and medication if they explained what it was they were going to do, how they were going to do it and why they needed to.
Having ASD, ADHD and ODD meant that Charlie’s recovery was much tougher for him and us to handle at times. His frustration and irritation at being confined to his bed, mainly thanks to the slow return of the feeling and movement of his legs, plus the chest drain and catheter he had, meant he would act out from time to time. It was so bad one day, towards the end of his stay at RNOH, that he actually made me cry and I felt like I had no choice but to leave the hospital for a couple of hours to allow us both time to calm down. (He did apologise to me when I returned.)
People have continually commented on how impressed they are with the way I am handling Charlie’s illness. When you take it day by day, smiling while you try to remain positive, it’s inevitable that people will take notice and potentially say something to you. I can safely say, however, there are days when it all felt (and still does) too much for me to handle and all I have wanted to do is go home and climb into bed. However, I have powered on through, knowing the good days outnumbered the bad ones, especially when Charlie was exceeding everyone’s expectations in regards to his recovery.
The chest drain was certainly a source of irritation for Charlie and myself. It was placed, via surgery, the day following his surgery after he had complained about it being hard to breathe. The hope had originally been that it would only need to remain in place for a few days, but, in the end, the chest drain had to remain for the entire time Charlie was at the Royal National Orthopaedic Hospital. It was removed about two weeks into his stay, but it had to be replaced barely hours later after he still found it hard to breathe. The irritation came from the fact that no one could be certain how to approach the issue of the fat that had suddenly been drained, which had come as a result of a chylothorax. It wasn’t until one of the surgical team contacted the Royal Brompton for advice that the drain was finally able to be removed permanently.
In the end, Charlie was a patient at the RNOH for a grand total of 30 days, a long time for any child to remain in hospital. He has now been transferred to the University College Hospital in Central London, where he has begun the next phase of his treatment – Chemotherapy and Radiotherapy. (Keep an eye out for another blog entry about that).
For now, I want to thank the incredible team at the Royal National Orthopaedic Hospital for everything they have done for Charlie. They were amazing, patient, kind and understanding and it is thanks to their hard work that my son is now able to move and feel his legs again. Yes, he still has an extremely long way to go before he can walk, if that is even possible, but this team made it possible for him to have the potential to do so.
Before I sign off, I would, again, like to ask for your donations. We are still raising money for Children with Cancer UK, having already smashed through our target total of £2500. Rachael, my daughter, has followed through on her promise to shave her hair off and she is rocking a cool new look! So please share and donate here.
Please note that this page is now closed to donations.
Thank you.
Baking & Tantrums 