This post was originally published on April 21st 2019 via Ellacott’s Ramblings.
Charlie finally being able to come home and regain some semblance of normality in his life was not as easy as we had thought or hoped it would be. With the need for daily antibiotics for the two more months and weekly hospital appointments, it became clear immediately that it would take time before we could fall back into our normal routine. Even then, we still had to gradually get Charlie used to be being at home and at school, something that he did not find easy to do to begin with.
We were and have been very fortunate to have an incredible team of people, from the staff at all the hospitals who treated him to the teachers and support staff at his school, who have worked with and supported us as Charlie went through his cancer treatment and his recovery. Without any of these people, I don’t think Charlie would be doing as well as he is now, so I thank each and every one of them for everything they have done or will do for us.
Settling in at home was more straight-forward than everything else, especially once we got into a routine of the daily visits from the Croydon Hospital at Home team, who would administer his antibiotics, take weekly bloods and other needs for Charlie. We were extremely impressed with the team, especially with their patience when Charlie was having a meltdown and refusing to have anything done. They worked with us to help us get Charlie back to school, even if it was just for afternoons while he was on antibiotics, including coming in to talk with a select group of staff members about his needs, what to do in emergencies and what illnesses we needed to made aware of if any child in the school came down with them. They made that transition back to school much easier for everyone involved, even if Charlie did take a while to accept it being a part of his normal routine again.
Once we were settled into a routine, life certainly became a lot easier for all of us. It was even easier once his course of antibiotics were finished as it allowed us to take Charlie out to different events we were invited to. He was certainly spoiled into the run up to Christmas, attending multiple Christmas parties (with the opportunity to meet some well-known faces) and taking trips to the theatre and the cinema. All of that went a long way to helping his confidence and self-consciousness. Charlie has found the stares and looks of sympathy very hard to deal with as it makes him more aware of his situation and how different he is to before this all began. Accessing all these events and activities has shown him that he can still lead a pretty normal life (within reason) and that the majority of people generally will overlook his wheelchair (though, not always for the right reasons).
Admittedly, just everything was going right, something just had to go wrong. We were delighted to be able to celebrate Christmas at home, something we had not been sure would be possible at one point. We were all so happy to sit down and open our presents together on Christmas morning and have Charlie be all cheeky with us. However, just after lunch, we checked on Charlie and discovered that his feeling unwell was something more serious than we had expected. His temperature had spiked and he needed to be admitted back into hospital. Not exactly how we expected our Christmas to go. We were fortunate that it was just a Picc Line infection that was easily treated and only required Charlie to remain in hospital for a few days, with him discharged in time for New Year’s Eve. Even though he did moan about having to be back in hospital, Charlie did receive a fair few presents while he was there and came home with far more than we had brought in for him.
Thankfully, that was his last in-patient admission and hopefully there will be no more until he has surgery to lengthen the rods in his back. Now we are working towards getting him strong and confident once again in hopes of regaining much of his abilities from before he was diagnosed. We are just waiting on that all-important appointment to reveal whether his latest MRI scan has given him the all-clear. We would have received this news sooner, but it took five different appointments to get the scan, due multiple different problems. I am relieved he has now had the scan and, if what we were told is true, we will be getting that all-clear!
Now, we are looking to the future and hopefully putting this awful ordeal behind us. While we know we have a long way to go before Charlie is officially discharged from all the departments, we feel like we are heading in the right direction. Fingers crossed that things only continue to get better from here!
Baking & Tantrums 