Eight weeks ago Dylan had a CT scan as part of his transplant reassessment. It was his first one in 2.5 years and although he had been having 6 monthly x-rays we were eager to see the changes properly as they x-rays weren’t very clear to interpret. At first glance it all looked good, some cysts has shrunk and some had gone completely so there was more scar tissue. Great stuff.. so we thought anyway!
Then the bad news came, firstly via a very poorly worded letter that prompted us phoning multiple times. Then two personal phone calls, one from his Oncologist and then one from the Doctor in charge of his transplant review at Great Ormond Street.
On their second review of his scan they found a brand new lesion (which in this case is a hole) in his T10 vertebrae. And on their third review of his scan they did in fact discover some small new lung cysts.
His cancer had reactivated in his lungs and in his spine. We were unsure if he originally had a T1 issue but this one was all new and a total game changer. It meant no contact sports or games according to his Physio.
Then came the waiting game... we decided not to tell Dylan, or the other boys straightaway, so therefore we have kept all this fairly quiet. Dylan has struggled a lot lately with his emotions and PTSD for various reasons and actually had a huge breakdown during his scan. It was pointless worrying him for weeks on end without all the facts, plus we were due to go to Disneyland that very weekend so we wanted to give them all a happy memory not tainted with fear of the future.
The days following Disneyland involved lots and lots of phonecalls for everybody. Nottingham had a hard time getting hold of the scans for most of the week sadly which held up the process slightly. We got a few tidbits of advice which helped but we were just worrying constantly. Then we started to question every muscle pain, increased heart rate, fluid input and output. We wondered had we missed some subtle symptoms or had we all mistaken them for his EDS/Hypermobilty when really it was LCH all along?
When Nottingham Children’s eventually got a hold of the scan (I won’t go into a rant about a certain other hospital on here as much as I want to) they infact found another vertebrae to be affected. The CT scan that Dylan had was only of the chest area to check his lungs originally, so there was only so much of the spine that could be seen. Due to this and some symptoms Dylan might have been showing, it was decided a full skeletal survey was needed to assess the extent of the damage to his spine and any other bones. That was booked in for the 8th of October and an MRI was booked in for the 16th under GA to scan his brain and pituitary gland during which he also had a tumour marker blood test sent off to GOSH. At this point we decided to tell Dylan as he was starting to question what all the tests were for. There a few tears at first but he quickly decided he was excited to choose new fabrics for wiggly bags!
A clinic appointment on the 18th revealed that at first glance his MRI looked fine, although it did show some damage from back when he was on life support which we always suspected anyway as he has a few issues such as not regulating body temperature properly and his emotions. The full in depth report would take two weeks however. A repeat CT and tumour marker test were ordered to see if we could be sure his new lesions were active as they couldn’t be seen on any of the x-rays due to them being so small. We knew they weren’t on the CT back in February 2017 but realistically they could have occurred at any point after that. We were hoping a short gap and a rescan would show enough changes to be able to accurately judge if they were active but biopsy hadn’t been ruled out at that point.
The reason we needed to be so thorough with the checks was to make sure he was on the correct treatment as lesions respond different to certain treatments depending on where they are. What would easily treat his spinal involvement would probably not treat his lungs for example. But if his lungs lesions weren’t active anymore then he could go on a much kinder treatment with less side effects. It was felt that at the moment, the new cysts were small enough not to be a worry, so a few extra weeks of waiting for more definitive answers wasn’t going to harm him really. Plus he was pleased to get a few extra weeks of normality, especially as it was nearly Halloween and there was lots of fun stuff going on!
He had a second scan in the half term holiday and we got the results a week later. Between the two scans there was definitely lung changes and another new vertebrae on his spine was quite badly damaged even causing a loss of height. Whatever was going on it was progressing fast in his spine at least to have pretty much destroyed another vertebrae in matter of weeks!!
It has now been finally decided that he will be having a Hickman line in and going back onto the same treatment as before for approximately two years, starting from next week hopefully. The spinal team are also going to be involved so we’ll soon find out what we do with regards to that damage. We were just glad to finally have a plan after weeks of waiting and Dylan has already had time to process it all so at the moment is handling it fairly well but of course that may change when it all starts.
We are devastated that he is having to go through this all again. I once was told with Histio it’s not a case of ‘if’ it comes back it’s ‘when’.. I just hoped we would get a few more years free from it. It also makes you wonder how many times he is going to get it and at what point is it going to become too much? Suddenly the anxiety for the future is back and the blissfully trying to live for each moment has been temporarily put on hold...
Expect more blog posts from us in the near future with updates and information, we need a bit of time to get everything in order now we have a date and a schedule but once it’s all go I’m sure I’ll be back to vent about what it going on and share it all with the world to help keep me sane over the next few years!
