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!

Nodules vs Lesions vs Calcification

Scans of Dylan’s lungs are tricky to interpret even by the most well trained radiographer. Part of the reasoning for this is obviously how rare it is, most will never come across a scan like his in their careers. The other reason is that certain things look so similar and without a biopsy each and every time there is no definitive answers other than watching, waiting and comparing scans to look for changes..

Back when Dylan had his End Of Treatment scan 7 months ago, there was an area on one of the slides we were sent that concerned us. On either lung there were some small white spots that resembled nodules which would indicate new disease occurrence. We spoke to Dylan’s respiratory consultant who assured us it was probably areas of calcification (scarring) but he was also honest in saying there was no way to know for sure without a biopsy. So cue us on tenterhooks waiting for his follow up scans to look for any changes.

A brief overview of how Pulmonary Langerhans Cell Histiocytosis works is that the faulty gene causes the defective Langerhans cells to go an area of the body, presumably in an immune system response. These faulty cells then cause damage called lesions. A lesion is an area in an organ or tissue which has suffered damage through injury or disease, such as a wound, ulcer, abscess, or tumour. In other areas of the body it can be a hole or a rash or a cyst but in PLCH it causes a nodule. These nodules then progress over time and fill with air turning into small thick walled cysts then eventually large thin walls cysts such as Dylan has.

The cystic presentation is usually late stage disease and is rarely seen in children, the reasoning behind this seems to be that lungs usually tend to be a secondary or later organ to be affected by which point diagnosis has been confirmed and treatment has usually started and stopped the progression from the nodule stage. I am no doctor of course but this information has been taken from various medical papers by experts in the US.

Fast forward to this week’s scan which was an X-ray and we could see these white dots again. I don’t recall seeing the X-ray from when he had his line out as he was an inpatient but I also don’t recall EVER seeing these dots on X-rays before that clearly. However it then came to light that unlike every other X-ray he has had this one was done from the back, so this area must be further back in his lungs and obscured slightly from the front by the remaining cysts and scar tissue. Still slightly worried and not feeling very reassured Mike was scrolling through scans and low and behold those dots were actually on the first scan he ever had back in January 2016 if you scroll through different slides. So even if they are nodules they aren’t new ones, they’ve been there for two years and haven’t changed! This means they obviously aren’t active disease so I finally felt like I could breath again after 7 months of stressing out!!

But that is a good way to be really. We need to analyse everything and watch for changes.. in his behaviour, his sats, his energy levels and his scans. Because that is the only way we will pick up his disease reactivating in time to save him.

Disneyland Annual Passes

Today I’m writing about something a little different than Dylan, or childhood cancer or PTSD.. I am writing about Disneyland Paris, my happy place! (Well until we can possibly get Dylan on a plane to America that is). And no this is not an advertisement I simply want to share a little tidbit we found out..

After going to Disney last year for Dylan’s make a wish we were determined we wanted to go back sooner rather than later. Then we suggested going for Bryce’s birthday to him, as it is Star Wars ‘Season Of The Force’ throughout February and March, and he jumped at that idea! We priced it all up and without any meal plans we were looking at £1600 ish for four nights and five park days. Great stuff!!...

We then started looking at whether we could go back later in the year for the warmer weather season. There is a centreparcs resort affiliated with Disney nearby that looks stunning but you only get one days park pass with bookings. To buy tickets for all the extra days soon becomes expensive. So I looked into Disneyland’s annual passes..

Much like with Merlin passes over here, which we used last year, if you plan on spending more than five days in the parks it can be more cost effective to buy annual passes. The basic pass starts at €139 with some date restrictions of course though. However there are some perks that make it even more worthwhile if you upgrade to one of the more expesive passes...

For the €399 pass, for example, which is the top deal there are no date restrictions. You get 20% off in the shops and 15% off in the restaurants and character breakfasts (not including meal plans), up to 50% off hotel room prices. A FREE annual photo pass each worth at least €70. Discounted entry for friends and family at €35 a day. Free stroller or wheelchair hire worth €20 a day. Privileged viewing areas for shows and parades. Free access to swimming pools in hotels even when not staying on site. AND if that wasn’t enough we also learnt that you can pay monthly spreading the cost over the year if you wish. Also another top tip.. set one pass up before you go to receive your hotel booking discounts but do the rest when you arrive as you get 10% off the price of each pass after that and if you sign up three people you also get six months extra added on free to the original pass.

We chose the Infininty Passes and they have actually paid for themself and more within the first stay. Admittedly we only pay for 3 passes at the moment as I qualify for a carers ticket each day, and Logan is under 3 but all our passes came out at €1197 and the hotel cost us a measly €400 so pretty much in line with our original quote, then if we go back we only need to pay hotel costs next time. Plus we saved a fortune in the shops etc, got our free photo pass and hired Dylan a wheelchair for four days free as he got tired. It really was worthwhile and I strongly suggest anybody looking into travelling to Disneyland Paris to price up all the options first and see if it works for you..

http://annual-passes.disneylandparis.co.uk/

Fear Of Water

So in hindsight, planning Dylan’s very first swimming lesson on the anniversary of him going into Respiratory arrest at Nippers was probably not my smartest idea!! My anxiety levels were already through the roof that week without anything making them worse...

Bryce’s football training was rained off so we all decided to go and watch Dylan’s first lesson, rather than Daddy just taking him, as we thought it’d be nice to go for lunch at the nearby wacky warehouse pub afterwards. Within a few minutes of being in the pool he slipped and went under for a few seconds! He was messing about showing off (as usual) and got too cocky with it. Prior to all this drama with Dylan that wouldn’t have phased me as it was literally only seconds but I now know that is all it takes. I spent the 24 hours after that a nervous wreck and I’m still feeling quite highly strung and emotional now as it tipped me over the edge.

When Dylan was on life support the second time there was a child come in to the ICU one night that we never saw, we knew it was serious as they were rushed straight into a private room. It was just as Dylan had started to turn a massive corner and recover but sadly this child did not.. I don’t know how old they were (I didn’t ask) but from conversations I estimate no younger than Dylan and no older than Bryce. I heard from family that they had slipped under the water in the bath for a matter of seconds, whilst mum ran to grab something, and then got water on their lungs. They didn’t drown instantly like most people would assume, they were on life support initially and passed away whilst in the ICU some time later.

Dry drowning can happen after a child leaves the water, usually fairly soon after though, and is related to water causing the airways to spasm. Delayed drowning or ‘secondary drowning’ however, can happen as much as 24 hours later from water sitting / building up in the lungs, causing inflammation and a drop in blood oxygen levels. There have been a few cases of children passing away in their sleep many hours later. Oxygen levels naturally drop in sleep slightly anyway, they then drop too low to sustain life due to the fluid build up. Whilst uncommon, I know it technically can happen and I can not shake that fear everytime Dylan goes near the water. Especially with his already damaged lungs.

The signs of secondary drowning are; 

• Coughing

• Chest pain

• Trouble breathing

• Feeling extremely tired

Your child may also have changes in behavior such as irritability or a drop in energy levels, which could mean the brain isn't getting enough oxygen.

Children of any age should never be unattended in water, even Bryce who is now 8 and a capable swimmer, has slipped under when messing about once. It is also important to teach water safety and correct breathing techniques around water (such as blowing bubbles for example). Teaching children to be confident swimmers from an early age also helps reduce the risk of them panicking and gasping for breath if they did go under. Most children will just accidently swallow water in the case of being submerged, it is usually the panic response that could cause them to try to take a breath under water. If you have any reason to believe your child has inhaled water seek medical advice straight away. In any instance of a child going underwater accidentally it is important you closely monitor them for 24 hours including during sleep as you would after a head injury for example. 

I have an irrational fear of water now, or should I say my children IN water but you needn’t.. Just be safe and know the signs. Back to swimming tomorrow.. let’s hope this time he doesn’t mess about and give mummy a heart attack!!!