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!!! 

Two Years

This day two years ago Dylan stopped breathing on the entrance way floor at playgroup.. it’s not a day I’ve talked much about previously in too much detail but I feel today is the day I share that story with you all and recap the events..

Previous to the events of February 10th 2016 Dylan had already had two collapsed lungs. We had been told it h a ‘big deal’ by some friends and families and the whole situation had been shrugged off by most people. I had become some what shut down and wouldn’t talk about the reality of the situation because it had come as a huge shock to us that our previously healthy boy was suddenly so seriously ill, so nobody really knew the truth. The truth was very bleak.. we had been shown a hopeless looking scan of Dylan’s ‘swiss cheese’ lungs and told he likely had only months left. How do you process that? How do you tell people?! The doctors were looking into lung transplant but that would only buy him extra time, if he even made it to the operating room. I was broken and just trying to live moment by moment.

I took Dylan to playgroup on the morning of the 10th for the first time since it had all started. I needed to talk to somebody and I had been attending that particular group for nearly six years with both boys so they were like family. We had probably been inside ten minutes when Dylan started to get upset. I checked his oxygen levels on the monitor and they were getting low so I called for an ambulance. I describe Dylan’s symptoms and medical history using all the technical medical terms which I don’t feel the call handler knew so I was passed over to be ‘called back’. After ten or so minutes passed he started to get worse so I moved into the lobby area with him and two of the helpers from playgroup, one of which was a health visitor, and previously a nurse, so she had medical training. I phoned 999 again and got told an ambulance was on it’s way. After ten/fifteen more minutes I phoned again, knowing that we were clearly NOT being treated as an emergency as we were only a short distance from the hospital. By this point he had been sick and started to get very distressed. He passed out and stopped breathing whilst I was on the phonecall. I knew how to do CPR in principal but in that situation instinct takes over and I asked and Caroline from playgroup, who I knew was trained in Basic Life Support, if she could administer mouth to mouth etc whilst I stayed on the phone.

Luckily he started breathing again after a few rescue breaths and I counted out his resp rate over the phone. His breathing was shallow though and he was looking very grey as is consistent with low blood oxygen levels. A paramedic car turned up a few minutes later at the same time the ambulance did, they took one look at Dylan and scooped him into their arms and ran across the car park with him without saying a word to me. I don’t think they had been relayed the severity of the situation either because they were not prepared and clearly shocked. The put him on oxygen and read the medical notes I gave them as we sped to the Royal Derby Hospital with me in the front. And I will tell you now the way people drive when an ambulance is trying to get through is SHOCKING!

I’ve been previously told how ‘calm’ I was during all this. The reason why is quite a sobering one.. I thought that his time was up so what good was screaming and panicking. I could try to save him yes but truthfully I thought he was dying there and then. I actually clearly remember when his eyes rolled back into his head saying ‘here we go this is it’ to myself. I’d prepared myself for that moment for the last month.

When we arrived at Derby I was met by a VERY rude consultant who point blank refused to phone QMC as per his medical alert because ‘he was not going to make it anyway’. I can’t quite remember at what point he was intubated and ventilated to be truthful because I was an emotional wreck by this point. All my calmness had faded and whilst they were working on saving him my emotions took over finally. I do remember some things from that resus room though. They did an X-ray and one lung was collapsed so they put a drain in and somebody did phone the QMC. They then did another X-ray to check the drain placement and the other lung had collapsed too. By that point the PICU consultant and team from QMC had arrived and took over to do the second drain. I remember the consultant being highly amused when Dylan briefly woke up and tried to “help” as he found the lady at Derby to have been a bit rude also. Don’t get me wrong the situation was dire and he was fighting for his life, but she was very blunt and basically told me he was probably brain dead!!

They took him via ambulance to the QMC but I was not allowed to travel with him. My parents took me over and my sister went to fetch Bryce from school... 

You see whilst all this was happening Mike was actually out of the country!! I haven’t talked much about that either because certain aspects of the day aren’t public knowledge still, but Mike was in Barcelona on a work conference as I had assured him that ‘Dylan would be fine for two days’ how wrong was I though?! Thankfully they flew him home very fast and got him to us by 9.30pm that evening but let’s go back to the main story now..

When I arrived at the QMC I wasn’t allowed to see Dylan. They were too busy trying to get him set up on all the machines etc. Then rather swiftly I was lead into a side room by Dylan’s Respiratory consultant and again I thought ‘this is it, this is where you tell me his time is up and we got weeks not even months’! But no.. instead I was introduced to his colleague as being an Oncologist. The exact words out of my mouth were, “you know what’s wrong with him!” and I was actually relieved to be meeting an Oncologist which most Cancer parents hate me for saying.

The rest of the story most of you know... He started treatment instantly. Mike arrived with us by 9.30pm and he had stabilised, he had a bad turn the following morning in the early hours but the doctors and nurses fought to stabilise him again. He slowly improved and was extubated on Valentines Day. Then of course he was stable for a short while on the wards, before he stopped breathing again in March and then there were the horrific weeks that followed and his recovery process.

Of all the occasions that Dylan has nearly lost his life (including the day he was born ironically - he always was trouble) I find this one of the hardest. Even though it is not by any means the worst memory I have, Easter weekend wins that hands down, it happened in a place that means a lot to me and a place I still regularly attend with Logan. It took me a long time to be able to walk through those doors without experiencing flashbacks of it all. It also felt too unfair, like we had had such little time to process how poorly he was and we hadn’t done the things we wanted to with him. We thought we had more time. Unlike over Easter weekend where he was visibly suffering, he didn’t even act unwell.. Sure he had lost weight and was looking paler but up until 10am that day he was still the happy, playful cheeky boy we knew so it was hard to accept (and easy to forget) he was so seriously poorly. It also marks the start of the downward spiral that lead to Easter weekend. Even though of course it all started in the December, this time he stayed in hospital throughout with no respite and constant chemo and life threatening occurances. It was the start of him fighting for his life..

But here we are, two years after the day I really accepted he was going to die, and he is still here kicking ass!! Sure he has some issues and we live with the fear of relapse, but he is doing so well at the moment for the most part, we try to focus on living life in the moment and to its fullest. He had his first swimming lesson today and loved it, all through chemo that was what he was looking forward to most! He has also had a funky new haircut today so looks super smart ready for his Valentines disco on Monday.

We really are so very lucky to have him with us, he is a true miracle and amazingly strong. And his big brother is also one of the bravest kids I know, having to face saying goodbye to his brother (and best friend) has left him scarred in ways but he is truly amazing how he has coped with all this. And little Logan has been thrust into this world with no choice but is so happy and laid back it’s unreal, he brings a little laughter and sunshine to our world on the bad days.. <3

All It Takes..

Some times all it takes to set my mind racing is something small. This evening is one of those times!

Dylan has been fine all day apart from sulking over a broken scooter and throwing a tantrum on the way home that left him a little breathless as normal.

He has this little habit of holding under his armpits near his chest and when we ask him why his typical response is “nothing”. Occasionally (and I mean very occasionally) he will say his chest hurts but usually that is when pointing to his stomach because he needs a bowel movement, or his side because he has a stitch from running / walking too fast..

Tonight he started doing his holding under his armpits thing and saying “nothing” was wrong when I asked. I don’t know whether it’s just habitual, like a few other quirks he has, or whether it’s something to be concerned about. I will bring it up at his next clinic but there was a theory it could be his scars itching or feeling odd rather than his actual chest as that is where they are all located. Still it makes me worry.. is it a cyst bursting or a new nodule or cyst growing?!

He has eaten and drank really well tonight which he never would when he had a cyst pop so that’s reassuring in that way. And he has been playing fine, singing and shouting and not getting tired at all.

Come bedtime he was fine. Numbers were all good even though that has become a challenge in itself now. His PTSD prevents me from getting a fully accurate reading when he is awake as he gets very stressed about me checking him. Even though we use to do it multiple times a day as routine, gradually we’ve had to stop and are now just down to once a day (unless we are concerned), which is just before bedtime when he is lay down and hopefully relaxed. Then we can also see how the day has effected him and whether he is tired. He really overthinks his breathing and gets tearful and fidgety if we can’t get a good reading quickly. I’ve tried various calming methods but I think after everything he has been through it’s normal really. Because of this I always check on him a bit later in his sleep. 

Sleep studies are how doctors get a good idea of a persons oxygen levels and heart rate during rest but also because during sleep the body isn’t able to ‘compensate’ the way it does in the daytime or be influenced by outside stimuli and you actually get a more accurate picture of how a person is coping. This is why we check him again, we can see how he is without him stressing out, breathing funny on purpose, fidgeting or talking away to himself as he likes to do! 

Tonight I couldn’t get an accurate heart rate reading as he was too unsettled. His oxygen levels read at 98 so then I counted his HR out manually twice and it sat between 70-85 which is normal for Dylan now.

However, he felt a little sweaty but not feverish. This coupled with him being unsettled could be because his room is warm. He usually gets a bit like this after a bath if it was too warm but he didn’t have one this evening. Back when all this first started he use to suffer horrendous night sweats and the nurses always thought he had a fever because his bed and pjs would end up soaked. We were told this was down to his oxygen needs. As his lungs improved and when he started on overnight oxygen the problem went away. He has been fine ever since coming off the oxygen too so it does worry me that it is a sign of the disease reactivating.

I will keep checking on him and hopefully as his room cools down he will be fine. Or he is just sweating off the cold he has. There really isn’t enough “symptoms” for me to be concerned, I know that in my head but it doesn’t stop good old anxiety and PTSD coming out to play!! I was having a conversation the other night and explaining how Dylan will never be classed as being in remission. His cancer is never “gone” it’s just inactive. This I think shocks a lot of people as it’s a hard concept to understand but it goes someway to explaining how we feel daily even though life is going great right now. We are literally waiting to see what flips the switch in his body to turn this evil disease back ‘ON’ again... 

This is our life now. But at least it is a life.

Triggered

So after writing my post last night I had a full on meltdown. Something happened New Year’s Day that isn’t my story to tell but it landed us back in a hospital visiting family members after a very serious incident that could have been fatal. Whilst we were waiting Dylan kept looking uneasy and tearful and kept telling me “I love you” over and over.  I put it down to tiredness as it had been a long stressful day after a late night prior for New Year’s Eve. That night I couldn’t sleep and kept flashing back to the moment we started to say goodbye to Dylan and turn his medications off. I had been a lot better recently so it almost felt raw again.

Fast forward to last night and I was still feeling uneasy and picturing those moments we nearly lost him in my mind. Feeling tearful myself and struggling to fight back the emotions, I was then tipped over the edge by Dylan waking up crying. He obviously got up to the toilet and got disoriented which he can do sometimes but then he kept saying “I love you” over and over to me again when I tried to figure out why he was crying. After taking him to he toilet and putting him back to bed once he had calmed down, it just hit me like a wave and I couldn’t hold back the tears any longer. Luckily he was fine for the rest of the night but I didn’t sleep well.

One of our family members that was involved in the incident is still not doing very well so it’s a very worrying time for us right now. The other is now recovering at home thankfully but they could have both been killed and it really is another stark reminder that life is precious.

2017

As I sit here staring at the Christmas lights flickering and thinking about the boys going back to school tomorrow I am inspired to write again even if it is only brief..

I don’t want Christmas to be over, I don’t want the eldest two back at school, I don’t want to take the decorations down. I love the magic of Christmas. The way it makes everything seem so much more cosy and calm. I don’t know whether it’s because I am a December child myself or whether it’s just me trying to escape reality. I had a hard time at the start of December this year. After two ruined Christmases (well actually four but the two previous weren’t because of Dylan’s illness) I was feeling jaded and depressed. I’ve probably overcompensated this year and spent too much money, put up too much tinsel and eaten too much food, but eventually I got into the spirit and now I don’t want it to end.

January is always a dreary miserable month as is much of February. Putting aside that it is Mike’s birthday soon it feels like it’s a long slog of cold wet weather whilst we all wait for Spring. It also reminds me now of the month we were told Dylan was likely terminal two years ago and brings back worries of him coping in the cold and with all the germs January brings. Luckily at least Dylan is nearing six months post treatment so he will be safe to catch chicken pox by the time that season rolls around!

To be truthful we’ve been VERY lucky in 2017 and have had a wonderful year. We’ve been on lots of days out and mini breaks. We had an amazing holiday at Disneyland Paris that is the best holiday I personally have ever had so far. Dylan barely got sick. He finished chemo and rang the bell and he got his line removed. For a boy that was considered to be terminal the year before he really showed us all he was determined to live life! The eldest has grown LOADS and started juniors and football this year. I can see him changing into a young man already and he makes me so proud. And the littlest is such a character, he is cheeky and has such a sense of humour for one so small it’s like he has been on this earth before.

Not everybody has had a good year. Family members have had tough times including just yesterday on the first day of a new year! Friends and acquaintances have lost loved ones. Lots of children we know of have lost their battles with deadly diseases. In lots of ways 2017 was pretty awful so in our little ‘bubble’ of five we feel very blessed. It makes me worry that because we’ve had such a good year.. that now something bad will happen and crash all our hopes and dreams for the future. 

I hope that 2018 is kind to everybody. Bad things will always happen that is part of life sadly. But I pray for no unexpected surprises and health and happiness for my loved ones and their loved ones. It’s a sad truth when you’ve come to accept that in life people get sick and sometimes it’s your own children or parents or spouses. A lot of people never contemplate their own mortality until it happens to their family, but it certainly encourages you to live life to the fullest and to cherish every moment. And that is my only resolution for this year again.. to continue to make memories and cherish every single day with a grateful heart.. <3