Overdue Update

It occurred to me late last night that I haven’t blogged in so long! Between living through a pandemic and homeschooling three children I’ve let things slip it’s true. When I first started blogging it was a release for me, to put the things I was feeling down and get it out of my system. Then when Dylan finished treatment the first time I started running and found a new escape and a love for exercise, so writing took a back burner as I didn’t need it in the same way.

Despite the challenges that 2020 bought I am proud of all I achieved, I managed to finish my level three teaching assistant course, and I ran lots, including the virtual Race to The Stones 100K and the virtual London Marathon. My eldest ran with me and got up to six miles, he has continued this and wants to do a 15K this spring.

But I think the biggest achievement of 2020 has to go to Dylan.. as he finished treatment again! Yep that’s right.. Surprise! Bet you thought we had another year left of Chemotherapy didn’t you?.. So did we!! It turned out on doing his 12 month review that he didn’t actually relapse in his lungs like a certain other hospital originally noted, it was isolated to his spine. Had this been confirmed at the start he probably would have had a different type of chemo but at least the one he did have we knew the side effects from last time. That being said, because it is a stronger chemo it was deemed twelve months was sufficient. His recent MRI looked great, lots of healing going on and no signs of active disease so he is NAD (no active disease) status!!

A extra big thank you to End of Treatment Bells for loaning us a bell so he could celebrate this momentous occasion at home with us all in November. Because of Covid restrictions it wasn’t possible for more than one parent to accompany him to the ward and of course we all wanted to hear him ring the bell. When he saw his professor and got the good news I was lucky enough to be called on speaker by dad so I could hear it. They had gone for Chemo and been told that the consultant wanted to see him so I worried it was bad news from the MRI and panicked when my phone rang but luckily it wasn’t and I believe I screamed out loud! 

As 2021 begins we are of course back in Lockdown and homeschooling again. For me I am using RED January as a way to keep my mind healthy as well as my body. RED January was started to encourage people to be active everyday and raise money to support those with mental health problems through exercise. Check out Sport in Mind to see what they do. 

Speak soon xoxo

Nativity & Update So Far..

Today at the end of his school nativity, Dylan made me cry. After the last song was finished, the headteacher came up to say a few words, as is customary, about the show itself. He then goes on to explain each year how they do not charge admission to the show but instead use it as a chance to teach the children about those less fortunate and raise money for charity. This year the school’s chosen charity is the children’s cancer ward at Nottingham QMC and it was explained that they were chosen because they are supporting a child at the school. As bold as brass, Dylan turned to face our direction and gestured to himself quietly exclaiming ‘that’s me’ with a cheeky grin! My reaction was to half laugh, half cry and whisper ‘yes I know darling’ before hiding my face behind Logan so I could compose myself! This to me just totally sums up this kid and his attitude towards this disease, he knows he is poorly, he hates it and feels it’s unfair and rotten sometimes but he won’t let that stop his beautiful bright personality from shining through and lighting up even the darkest times!

A lot of people keep asking how he is, and truthfully he is up and down but he doesn’t let it stop him. He has his moments of weakness and where things frighten him or the pain gets too much, but luckily a lot of the time his zest for life keeps him strong.

We’ve recently found out that even though only a few vertebrae have noticeable damage, traces of the disease could be seen throughout his entire spine, it doesn’t bare thinking about what might of happened if we hadn’t found it when we did, especially when one vertebrae was almost destroyed in a matter of weeks. We don’t know much about his lungs only that there were small new cysts, when he has his scans in January sometime to check treatment is working we may know more.

He has had 2 rounds of Chemotherapy so far, out of a potential 36+ over the new two years. The schedule is 4 days (with 2 doses on day 1) every three weeks. He has his line accessed every Monday for blood tests and so far his counts have held steady, they may change when the steroids stop early January. He isn’t really suffering too many side effects yet apart from tingly leg pains and weight gain but again this may change when the steroids stop as they counteract some of the symptoms and stop his ‘allergic’ reaction of sorts to one of the drugs that he had before.

We are very lucky that he is at home currently, most of his treatment is done in clinic or at home by the community team, so unless he becomes unwell with a fever we don’t need to be on the ward.

Because he has a central line that feeds directly into a vein by his heart, any fever must be treated as a line infection until cultures are clear, because there is a risk of sepsis. In the case of a fever it would be an admittance onto the ward, so this is why we are very careful with Dylan being in contact with people who are unwell, especially when his infection fighting white blood cell count becomes low from Chemotherapy. This also means we have to be super careful with everything we do to keep the actual line free from bacteria such as dressing changes on the insertion site, and keeping the end of the line clean and dry. We also have to be very careful of it being pulled out of course, this is why he has a ribbon around his neck.. it goes down to a special fabric pouch that keeps his line clean and held safe against his body to minimise the risk of pulling accidentally. Certain activities are off limits though such as contact sports and soft play, which we have had tears about because of birthday party invites sadly that he can’t attend. 

His next round of Chemotherapy does unfortunately start on Christmas Eve and we will have to travel to hospital for a dose on Christmas Day as the community nurses are having a well earned day off. However we are hopeful this will mean that we can still go away for a few days at New Year as was planned and booked before all this happened. 

We wish you all a Merry Christmas, and unless there is any major drama a Happy New Year as I won’t blog again hopefully until we get back from our time away. Keep everything crossed we make it there!! X

Dylan vs Cancer ROUND 2!

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!

Mickey’s New Year Party

We returned home Friday from another wonderful (and exhausting) trip to Disneyland Paris for New Years and I wanted to write a little about it and what Disney means to us. .

It’s hard to explain the way that Disneyland makes you feel to those that haven’t experienced it. Especially for those of us that have faced trauma and hardship in life, it is an escape from the real world and all the problems in it. Once you walk through those turnstiles you leave your worries at the gates as you are drawn into the magic of it all. Walking down main street to the tune of it’s cheery music, seeing each specially designed pristine store front, the horse drawn tram, the paddy wagon, the old style cars. The characters around each corner ready to greet you with a smile and open arms. The beautiful sparkling castle that is strategically placed to catch even the smallest ounce of sunlight. It’s the stuff dreams are made of and where your world is a fantasy! Everything is carefully created to feel as if you’ve stepped into the pages of a book or a movie, and you’ll often see grown adults with tears in their eyes as it can be overwhelming at first.

Back when Dylan came off life support he had a wish granted by Make A Wish which as some of you know was for a Disney trip. This however, was put on hold for over a year due to his health, so when we finally made it in the summer of 2017 it was like a dream come true and it reignited my love for Disney that is for sure!

Whilst in hospital Dylan was mostly bed bound and passed the time watching Disney movies, these bought him comfort during tough times and provided him the chance to dream big. Even when on life support we played his three favourites on loop to him, which we think he heard as he talks about being able to ‘hear but not see’. Bryce also was able to connect with his brother watching these movies, and try to retain some innocence whilst dealing with such an adult situation. 

This is why when we visited Disney it was so emotional for us all. We never thought he would make it and to have him there with us and his then two brothers was just amazing. Seeing him react to things from his favourite movies and meeting the characters, letting him go on rides, watching Bryce smile again and act carefree.. these were just some of the things that made us realise we wanted to go back sooner rather than later!

When we planned our February 2018 trip, as I’ve written about before, it worked out most cost effective to buy annual passes and book the hotel using their discount. This meant we could also make future trips so it was a win win situation. This trip was also the first time we thought about New Years Eve.

When watching the stunt show, Dylan was devastated as Lightening McQueen wasn’t in it.. I knew from previous years that he drove down Main Street for the New Years Parade so I started researching it all. He was back in the show by our April trip but it was a much smaller segment sadly than it use to be. Cars 1 & 2 were two of Dylan’s favourite films and he quoted lines from them all the time! These were also two of the films we played to him on whilst he was on life support. We never though he would see the third installment and I actually cried when we took them to watch it at the cinema. His bedroom is all Lightening McQueen, he had a Cars bed at the time and he even requested a ‘Fabulous Lightening McQueen’ teddy for finishing treatment. His face absolutely lit up when he drove toward us on New Years and when he turned and flashed his headlights in his direction I thought he was going to explode with excitement!

The other deciding factor for a New Years trip was that I had heard through the grapevine that the characters from Big Hero 6 would be there, in fact we nearly drove across at Halloween to catch them! Big Hero 6 was Dylan’s other favourite movie at the time, and still is. He liked the fact that Baymax was made to help people ‘feel better’ and he had a Baymax soft toy that went to all his scans alongside his favourite Mickey Mouse teddy. He was very excited to see the posters as we walked into the theatre and he was fixated the whole show. The only thing that would have been even better would have been the chance to meet Baymax like you can in America. Now the series is on Disney XD there is hope though, so fingers crossed for that one!

Despite it being really busy the trip was worth it, the boys even got to meet their two favourite Star Wars characters; Chewbacca and R2D2, who aren’t usually at the park day to day. On New Years Day due to the older boys green cards (I won’t explain why Bryce now has one as it’s too personal to write online) we were waiting to board the Molly Brown riverboat first and a cast member offered them the chance to steer the boat! This was an amazing experience for them and they both got certificates which will be treasured. Later on that day we got a call from the hotel stating there was a surprise envelope for Dylan when we got back that evening. It turned out we had been chosen to receive some ‘Pixie Dust’ the next day, where a cast member personally escorted us around to meet all the characters in the Disneyland Park area. This was amazing and so invaluable to us. Even with a green card we always struggle with character meets, the queuing for the very limited time slots and then the set times to go back can be difficult for somebody whose illness can be unpredictable. There have been occasions we’ve missed our time slots due to being in the bathrooms dealing with issues or because he is too tired. Even with his wheelchair waiting can be difficult for him in the cold of December so we need to be careful. And don’t even get me started on the Lineberty app in Studios!

When people hear we’ve renewed our passes and are going again we get the inevitable comments.. ‘Your going to Disney again?’ but they don’t understand. Plus it’s not like we can jet off to Spain, Greece, Australia, America for a few weeks like other people. In total last year we spent 21 days at Disney so the equivalent of a three week holiday abroad, and because of the amazing pass discounts and tips we’ve learnt (like staying in a Disney hotel overrides any ‘black out’ days on the lower price passes) we probably haven’t spent much more either. These short trips to Disney are easy for us to control, they provide a safe environment where we know all the safety and emergency information. They have services and facilities to accommodate Dylan’s needs and we can take everything we need in our car without having to struggle. It’s our happy place, our second home, a place that brings us comfort and joy to our children so yes we will be going back in a few months and no we aren’t sorry! And if anybody else is thinking about doing it but overwhelmed with the planning or costs, speak to us and we can let you know the secrets to saving money.. 

Jam On Toast

It’s funny that something so small can trigger my PTSD even over two years later. But I suppose that is how soldiers feel when they return from war for years on end sometimes, and today I’ve been thinking about not only those who didn’t return from war, but those who did. I’ve also been thinking about all those that have suffered trauma, and feel as if every day is another battle with themselves..

For me this time it was something as simple as making myself Jam on Toast that started my downward spiral. I had been doing well lately, I have learnt to avoid triggering situations when I can and those that can’t be avoided, such as a pending scan appointment, I have spun them around into a positive scenario rather than one of fear. But it’s the things that catch you unprepared and off guard that hurt the most.

Jam on Toast was all I ate for days on end at points. It was the only free food we had access to on the wards, and over the Christmas period it was the main staple in my diet, alongside leftover Christmas pudding which I now cannot stand. When I made Jam on Toast last week, all I could think about was those weeks on the D wards waiting for a diagnosis, living in fear of the future, unaware of how long we had left with our son. I remember one night on the second admission I lay next to him and watched him sleeping and I just lost it. The thought of him being terminal and having months left to live consumed me. Those are the fears that Jam on Toast brought flooding back and I feel like I am back on D34/35, not E39 or PCCU.. right back at the start, fearing the unknown, fearing the future. Which is what I’ve been doing ever since.

Don’t get me wrong other situations trigger other memories.. such as the life support period which has my worst memories. I actually had to sell Logan’s Pram earlier than I planned on doing because looking at it reminded me that we went out to buy it one day whilst Dylan sat on life support and shortly afterwards his deterioration began.. That damn Pram gave me feelings of guilt and pain more than you can even imagine. I have a similar reaction to platters of cupcakes, flowers, certain songs, and my old car which Mike drives.. but I avoid scenarios where those things could trigger me. Walking past PCCU triggers memories of running from the parent rooms to him as he was deteriorating and worrying we weren’t going to make it in time, so I avoid walking that way around now when we have to visit E floor. You get the drift.

Christmas is a huge trigger for me and the last two years have been really hard, the fact I’m feeling in a bad place already isnt helping, so I’ve tried to switch off thoughts of that for now at least. Luckily I’d already done a lot of my shopping before I got triggered as I don’t really feel like it now..

Dylan has also had a rough two weeks with illness and eating AGAIN and because I’m already in ‘fight or flight’ mode from the Jam on Toast trigger my brain is in overdrive. I feel constantly like something is going to take him away from me, last night I even slept with him in our bed. I can’t sleep for wanting to keep checking his breathing and I feel sick to the pit of my stomach daily.

Logan is approximately the age Dylan was when this all started bar a few months, but he is bigger and very talkative so you could be forgiven for thinking he is the same age. He looks just like Dylan did at that age, except with slightly darker hair, he has the same smile and the same mannerisms and fits in all the same clothes Dylan wore that winter including the Tshirt he was wearing Christmas Day 2015, but I’ve not let him wear that one yet. So now I’ve found myself worrying about him too which is completely illogical I know, but PTSD isn’t logical.

I have C-PTSD or High Functioning PTSD which basically means I’m very good at hiding all this from everybody, putting it in a metaphorical box in my mind, and getting on with daily life. To the outside world I look mostly like a fully functioning adult, infact I’ve been told I actually come across as totally ‘put together’ and that I do ‘more than most’ but that is one of my coping mechanisms.. Keeping myself busy, being that ‘extra’ mum keeps my mind and my demons quiet until I let my guard down. Which I think sometimes is why it hits me so hard when I do have some downtime like this evening. 

It’s important to remember that actually.. Most people fight battles behind closed doors, and sometimes the quietest person has the loudest demons or that ‘perfect’ mum or dad crumbles into a nervous wreck every evening. But each morning they get up, put on their brave faces and head out into the world because even though life is tough, it could be worse..

Flying

Some of you will remember that back in January we went to Sheffield and Dylan underwent a fit to fly test. Even though he passed that particular test, all it actually showed was that he could cope with the reduced oxygen level during a flight, it didn’t test how he would cope with the pressure changes sadly.

During air travel, any air in an enclosed space will expand. For example.. we took a sealed tube of Pringles on a flight and the lid popped up and the foil on the top blew up like a big bubble. However when you return to sea level the air goes back to normal as did the tube of Pringles.

The theory behind Dylan not being safe to fly is that his air filled cysts would expand, but then these would return to normal at sea level so this part isn’t too bad as long as his lungs coped during the flight. We also theorise, thanks to the Pulmovista machine he was on during life support, that most of Dylan’s cysts aren’t walled off completely, as it showed that air does move in and out of them as he breathes. We’ve also seen evidence of this from CT scans where the cysts appear larger when he takes a big inhale. This should mean those wouldn’t expand at all. However, If any popped and caused a collapsed lung, the air in the chest cavity would expand and cause more of a problem than a normal collapsed lung, such as what is called a ‘tension pneumothorax’ and this can crush the heart and other organs.

In this country there is no equipment available to test how his lungs would cope with the pressure changes during flight. There is a case study of a boy in New Zealand with PLCH and lungs like Dylan, having a Hypobaric Chamber test post treatment, which had no effect on his lungs, and he then went on to have many safe flights.

When we saw Dylan’s respiratory consultant back consultant in April we spoke in great length about all of this as he had been researching into it. He knew of the case in New Zealand and of a colleague with a similar lung condition who had taken himself on test flights, starting off with short ones then gradually progressing to longer ones and now flying regularly all over the world. It was his opinion that now Dylan has been two years without a lung collapse, that it was potentially safe to try him on a short flight if we were fully prepared. We talked about every possible scenario and what could happen and how to deal with it. No doctor would ever say that it’s definitely safe for him to fly, because nobody knows. His condition is so rare there very is little to go on. The only way we would ever find out would be to try truthfully as he may have these cysts for the rest of his life now and he may want to see the world one day! It is a risk, but so is getting in a car, on a train, crossing the road etc. And we knew the risk was smaller now than originally thought.

Armed with all this knowledge, monitoring equipment and a ‘just in case’ plan we made the decision to let Dylan fly home from Paris with Daddy whilst I drove back. We went back and fourth about the decision over and over again, even at the point of boarding, but we took the leap! He was absolutely fine and actually had better oxygen levels than in the fit to fly test!!

Whether we decide to continue taking him on flights is undecided, and we certainly won’t be jetting off around the world any time soon, but it’s a start!

Media Drama Take 2

As some of you may have seen recently, the story of Dylan’s ‘miracle’ recovery has made it back into the media. We were approached by Clic Sargent earlier this year to see if we would help promote their Easter Egg campaign because of the Easter connotations of Dylan’s story. We had so much support from Clic Sargent we felt it only right to give back, and agreed wholeheartedly! And it looks like they may have done quite well selling their eggs this year, with some branches completely sold out! We have agreed to help another charity later on in this year too so watch this space! For us, giving back is very important, as is raising any awareness we can for this rare disease.

When we told Dylan’s story again, the wonderful lady at Clic Sargent went over it repeatedly with us to make sure it was correct and that it didn’t paint us in a negative way as previously had happened. She really was phenomenal with the detail she put into all her work and kept us fully informed throughout. Sadly due to a delay with the eggs from Morrisons, and Dylan’s story previously being so heavily publicised, they struggled at first to gain much interest. When it eventually went to press this week, the vultures certainly started circling again and we had numerous phone calls and Facebook messages from agencies and reporters. Some places even shared the story and changed the wordings to suit their own agendas..

Sadly once again, our story has hit the press during a time where another family is fighting to keep their child ON life support, and our story gets used to paint a certain picture or to argue one side of the argument. I have posted my opinions on this before if you scroll back through previous blog posts and look for the one simply titled ‘Charlie’. Mike has also copied and pasted some of what I blogged onto some comments today. I do not wish our story to provide false hope for parents, but nor do I want it to be used as an ‘example’ of what the parents should do. It is a completely different scenario and nobody should be passing judgements, without all the facts, after what they’ve read online. I will not pass any further comments on this matter and anybody found to be using our story for their own agendas on this case will be reported.

And of course the Daily Fail have reshared the shockingly awful article they wrote back in 2016 which makes me look like a terrible mother. Not really what I wanted from all of this really at one of the hardest times of year for our family.  That has REALLY made me cross because I got a lot of abuse from that article originally being shared, not in the mood to rehash it all.

But the icing on the cake and what has really annoyed me most today, alongside all this talk about Alfie, is this comment made on the Metro Facebook page..

“Imagine when the kid is old enough to understand. I'd be like "Woah, you agreed to kill me?"”

What a complete and utterly idiotic comment!! If I hadn’t grown such thick skin, I could have been quite hurt by this! For your information mister, we didn’t agree to ‘kill’ Dylan, he was already minutes away from dying in front of us and getting worse by the second. What we agreed to was to let him slip away peacefully without any more suffering. The split second he made a minimal improvement and showed signs of life we fought and fought alongside him not eating, sleeping or leaving his damn bedside until he was stable. You cannot comprehend how much love we have for that boy, and our others, so to make such a comment is laughable. And truthfully Dylan is nearly five now and he isn’t stupid.. Heartbreakingly he does remember parts of the period he was on life support with not being fully sedated. He knows he nearly died and he knows he is a miracle and technically shouldn’t have survived. Secrets fester and breed contempt, openness and honesty to the age appropriate level is something we strongly believe in, so hopefully he will never ever feel the need to question our decisions and what happened.

Aside from that little rant I hope everybody had a wonderful Easter and thank you to anybody who went out and purchased a Clic Sargent egg from Morrisons!