Baptism

Today was a year to the day since Easter Saturday 2016.. the day we said goodbye to our little boy and started the process of 'active withdrawal' i.e. stopping treatment and removing ventilator support.

We told them the day before, when we were pulled to one side and advised to consider switching off Dylan's ventilator, that we needed more time and we arranged to have him baptised. Being that it was Good Friday that was no easy task but the hospital chaplain went above and beyond to contact the Catholic priest who came and did the ceremony for us.

Despite the situation, his words stuck with me that day, "when Dylan is better I will redo this and baptise all three boys together"..  however, Dylan worsened over night and was at a very high risk of cardiac arrest so we discussed and agreed on a DNR and just prayed he would get through until morning so the rest of the family (his brother etc) could be by his side. Of course then at the point of saying goodbye he showed signs of fighting so we held on.. which again somebody else had eerily predicted.

Father John came back to Dylan's bedside on Easter Monday afternoon and said a healing prayer and that was when the real changes and improvements slowly started to happen!!

So today our THREE superheroes were baptised together by Father John at his church, surrounded by family and their new God Parents. We chose this date as a way to turn a day full of traumatic memories into a day full of happy memories for future years to come.. <3

Memories of Easter 2016

This last 12 months have gone by in such a whirlwind and time has crept up on us whilst we've been busy enjoying life!

The date that Dylan collapsed at Little Nippers came and went with only a little reflection and anxiety from us.. but this week is the big one. Of all the times we've almost lost Dylan the events of this week are cut the deepest. [It also doesn't help that Dylan's story is about to run in the media again on Tuesday and yet again it focuses on me and my supposed guilt and generally makes me out to be a terrible mother but I digress. Please excuse my terrible writing this evening!]

Yesterday was the day he stopped breathing on the ward and frightened half the staff, patients and families. Today was the day he had his MRI and CT and we hoped he was stable enough to be extubated fairly swiftly but of course then he just got sicker and sicker. I remember the tension pneumothorax from the ventilator and him going grey, the rapid blood transfusion that instead of being dripped in slowly over a few hours was literally forced in as fast as possible by a nurse squeezing the bag. I remember the further tension pneumothorax that almost sent him into cardiac arrest.. one of the consultants stuck a needle in him before the X-ray even arrived as he was literally going on us. I remember being hysterical, not wanting to leave him but not wanting to watch as they pumped adrenaline into him and prepped him for more chest drains. I remember seeing the oxygen level come up from 30% to 80% and not feeling relieved because I sensed it was going to keep getting worse which it did.

I remember feeling utterly defeated on the 25th and then completely in denial on the morning of the 26th. Even though I saw it coming and wished his suffering to end I didn't want to loose him. I was torn between wanting to be selfish and keep him forever and loving him so much that I wanted him to be free from pain. And that is how I felt not what the magazines or newspapers will have you believe. Not 'guilty' per se but TORN in half.

Of course then Dylan did his little miracle and showed signs of fighting back, and test results contradicted everything any doctor could imagine. But our little superhero never did read the textbooks! Slowly but surely we got him back and I am thankful every single day. But I am also anxious every single day, and these memories definitely increase that ten fold.

I know of other Histio families currently going through the ICU ventilator / life support hell this very moment and I feel as if I am right there with them sometimes, feeling their pain and definitely shedding a tear for them. I only hope that you get the outcome we did. Histio isn't fair. Cancer isn't fair. Non of these illnesses that take precious lives are fair let's face it..

To be 100% truthful, life isn't fair but it can be wonderful too sometimes so live in every moment and cherish the good and the bad days, as time is fleeting.. <3

Bigger Picture

Sometimes it's hard to see the bigger picture when you feel like you're drowning in hospital appointments, Chemotherapy, health scares and the day to day caring for a sick child. Sometimes information changes, appointments change, treatment dates change and the light at the end of the tunnel seems to get further away rather than closer..

I've always been a very grateful person, even before all of this, and I try my utmost to appreciate life and all it's ups and downs. I've always felt that somebody, somewhere is always worse off and wishing they had what you may take for granted. But we are all only human and sometimes we all have moments where we just feel overwhelmed and fed up.

We've had a good few months since Dylan was discharged in May.. in fact it won't be long before it's been a year since his little Easter 'miracle'. Aside from one major infection, some snotty noses and antibiotics for chicken pox exposure, we've been fairly lucky. I just wonder how much longer our luck will last sometimes.

Dylan had another CT scan last week and we finally got the results today and yet again they are amazing, lots of cysts gone and mostly just the larger ones remaining. The plan now is to continue with the Chemotherapy the same as it is and review it in August again potentially with another scan.

We still don't know when Chemotherapy will be finishing officially but we do now have a vague idea when his end of treatment review might be. Unlike with other Cancer's there is no set timeline or protocol to follow. No standard tests and no statistics to show that 'this amount of Chemo will get rid of the disease.'

They had talked about running a few additional tests to see if they can tell whether the LCH has now gone but short of doing another biopsy (which is too risky) there is no way to really know. You see the leftover cysts aren't actually the disease, they are just the damage it has left behind and no amount of Chemo in the world will fix them.. that is his body's job to try and do that.

It can all feel never ending sometimes.. another blood test, another chemo, another scan. The main thing to focus on when you feel like you're drowning is living every single day to it's fullest and fill your life with happiness whenever possible to keep yourself afloat.. <3

Missing Normality

Tonight I am sitting upstairs in bed full of cold whilst the boys are all sleeping and Mike is at work.. normally I would be trying to sleep or finishing the ironing but I cannot switch off lately for various reasons so I find myself writing as a distraction. I have tons of half written blog posts saved on my phone, but tonight I am taking the time to finish this one while I finish my lemsip!

I am more on edge than usual this last month, there are reasons behind this but some of them I cannot divulge at the moment. Others are things like Mike working more and more night shifts so I'm alone in the evenings with my thoughts for company and nobody to tell me I'm being irrational! Special dates and milestones coming up.. including that awful date he went into respiratory failure at Nippers which is looming. We've also had a few worries over Dylan's health due to him being exposed to very sick children at nursery, a concern over diabetes, the whole norovirus episode at Christmas.. and now me being unwell myself. How am I suppose to protect him from getting ill when I'm his primary carer and I'm ill myself?! Trying not to breathe on him is impossible when he flings himself at me and squishes my face for kisses!

It's also Chemo week here in our household AGAIN and that's the week I'm most on edge of all. We've had a good run lately with the Hydrocortisone combating the effects of Cytarabine but every cycle I doubt whether it will work properly. Completely irrational and illogical of course as there is no reason it should suddenly stop working. I also worry myself sick about his Hickman Line and infection.. I am so overprotective of that damn line it's like it's a fourth child!!

More and more nights I'm finding myself suffering insomnia.. reading things online about Cancer and other children suffering or even loosing their fight (sometimes people we know) and it makes me so sad for them and their families that it actually keeps me awake in tears. I cannot get back the naivety I once had to these things happening in the world. They are real and they are awful and if you are part of this Oncology or even Chronic Illness world then you have my sympathies and my prayers..

I find myself praying every night, to whoever may be listening.. I pray for the selfish things of course such as that Dylan will be ok, that this cycle will have no side effects, for good counts, for no infections, for his lungs to be healing. I pray for myself sometimes, for help with my anxiety, I pray I can sleep more than four hours so I can face the next day. I pray for my other two children, that I am being a good mum to them through all of this. I also pray for all those suffering.

I also find myself asking what happened and wondering.. why us? Not why did he get sick, but more why did he survive the unthinkable when so many don't? Why do others suffer so much and in what universe is it fair for innocent children to suffer?

Sometimes I miss the normality of living life oblivious to all of this. Cancer has hit our family before numerous times but when it's your child it is different. It has made me a better person in so many ways but it has also changed the way I see everything in life now. This is one reason I stay off Facebook and just use this blog. I literally have to stop myself from taking things people say to heart, such as.. 'is there anything worse than breaking a nail?'

I wish I could go back to being that naive and focusing on all the 'first world problems' as they are often called but I can't and I have to accept that those that haven't walked in these shoes simply cannot understand. I am fighting a battle in my head every single day between trying to live a normal life and what is now my new normal view of life.. <3

Teaching Children to Dial Emergency Services..

Does your child know how to phone an ambulance in an emergency situation? Any child with a basic grasp of numbers and how to use a phone could be a potential life saver in an emergency..

If a child dials 999 off a landline the call operator will automatically be able to pinpoint your address although it's never too early to teach your children to memorise this anyway incase they are ever lost or if the only option handy is a mobile phone.

Even with keypad locks on, all mobile phones should allow you to bypass this in order to make an emergency call so make sure you show your child how to do this.

Does your child know where you keep the house keys and could they unlock the door for the paramedics?

You don't need to be the parent of a chronically poorly child, or ill yourself to benefit from teaching these things to your children. ANYBODY can have a fall that renders them unconscious and children may be frightened if they cannot wake their parent. Teaching them the basics of dialling an ambulance is a very important life skill.

Dependant on age you can go into more details.. Bryce for example knows the basics of his brothers condition and how to explain it on the phone. He knows our full address, he can reach my keys off the key rack and knows where I keep them upstairs at night. He can recognise which key is which and unlock the front door. He also knows where Dylan's emergency medication is and is sensible enough now not to abuse my trust of him knowing these things.

On a slight tangent, It is also handy to have a fire escape plan in place in your household, especially for overnight. If access to downstairs is impossible, knowing which window(s) you could safely escape from with the children could save valuable moments in a high stress situation. Keep car keys and window keys upstairs at night if possible. In the winter in particular, having the car keys handy would mean you could put the children into the car to keep them warm in their pjs or drive them to a friend or family member once the fire service arrived.

Bryce knows it is a possibility in our household he may have to step up and phone an ambulance one day so he should be able to stay calm knowing how to do it and all the facts. In fact the entire reason for me writing this blog post today is because we nearly had to use our emergency plan last night..

Dylan has started to have panic attacks if he feels unwell. It is clear now that this was actually what happened on Boxing Day when we called an ambulance out to him. Last night he woke up congested and panicked because he couldn't breathe through his nose. Then he started to hyperventilate and couldn't catch his breath. He started going a bit grey and wobbly like he was going to collapse. At first I thought his lung may have collapsed again, like we also did Boxing Day, so I got Bryce to get the phone and keys ready incase I needed to give Dylan CPR. Once he calmed down with some basic breathing counting with me I could clearly see he was fine and his numbers on his monitor were perfect. We talked about it this morning and it is fairly obvious now he is suffering from anxiety attacks which is hardly surprising given everything. When he feels unwell he panics that he can't breathe or that something is seriously wrong and it causes him to have a panic attack and hyperventilate. Hopefully with plenty of reassurance this phase will pass but if it becomes a common occurrence that we cannot help him with we may have to find out about some play therapy.

I hope you never need your children to deal with the very grown up task of dialling an ambulance, but like swimming, it is a very valuable thing to learn just in case..

FAQ

Q. Did Dylan have any symptoms prior to his first lung collapse on Christmas Day?
A. The week prior to Christmas he had cold like symptoms for around 48 hours or so, so when he developed a minor dry sounding cough on Christmas Eve we thought it was because of this. Until he started to get breathless across the course of Christmas morning there were no other visible symptoms.

Q. Do you feel anything could have been done differently to diagnose Dylan sooner?
A. The only thing that may have sped up Dylan's diagnosis would have been an earlier biopsy. At first the doctors were looking for a genetic condition so they believed blood tests would show this. A biopsy was only taken after his second collapsed lung. Truthfully they almost didn't take the biopsy, had they not done he wouldn't be here today as LCH would not have shown on any blood test they ran.

Q. Do you smoke?
A. NO we do not smoke.

Q. Have you tried alternative medicines or therapies?
A. We do not take medical advice from anybody other than Dylan's consultants and those they seek advice from so please respect our wishes and do not offer unsolicited advice on this matter. This is not through us wishing to be rude, but so little is known about LCH we would hate to accidentally trigger a reaction.

Q. How is Dylan?
A. Dylan is doing amazing at the moment. His last CT scan showed his lungs have gone from being 80% cystic to approximately 20% and he maintains good sats without oxygen. He runs around, plays and attends nursery like any other boy his age. On the outside you cannot tell he is ill or what he has gone through at all.

Q. Is Dylan still receiving treatment?
A. Yes Dylan is still receiving treatment at the moment. He is having two types of chemotherapy every three weeks.

Q. Does Dylan still have Cancer?
A. Technically not, what Dylan has now is the after effects of Cancer. The LCH is now classed as 'Non Active' but there is lots of damage to the lungs caused by the disease when it was active.

Q. Does Dylan still have seizures?
A. Thankfully Dylan has not had another febrile seizure since March 18th. Febrile seizures are actually fairly common in children and they often grow out of them by approximately age three.

Q. What actually happened over Easter 2016? March 18th he had a febrile seizure and stopped breathing. He was ventilated to help him breathe but he gradually deteriorated and suffered more collapsed lungs and infections. Good Friday we were told he was likely not to survive his oxygen levels were drastically declining and his lungs were seriously infected. Easter Saturday the doctors discussed there being nothing more they could do for him and turning off the ventilator. We started the process by switching off the muscle relaxant and discovered he needed more sedation. Upon doing this he improved slightly, just enough to make us question everything and then his blood results showed astonishingly that his organs weren't shutting down despite the very low levels of oxygen so we stopped the process and waited leaving Dylan's fate in his own hands.. Somehow he fought back after that and improved very very gradually over the next week and was awake and breathing by himself by April 4th.

Q. How many times has Dylan had a collapsed lung?
A. We do not fully know, there will be collapses that occurred whilst chest drains were already in place but we do know he had 26 chest drain procedures.

Q. What is Dylan's prognosis?
A. There are very few cases of Pulmonary LCH in children so we have little to base an estimate on. Providing the LCH doesn't come back, Dylan now stands a good chance of living a fairly normal life. His lungs are damaged however and at present there isn't enough evidence to predict how well they will heal or how his body will cope with the scar tissue as he grows so he will be reviewed into adulthood by the lung transplant team.

Q. What are the survival rates for Dylan's condition?
A. Survival rates for general LCH are quite high providing it doesn't attack a major system. Survival rates for Pulmonary LCH can be quite low if not caught quickly and if any respiratory infections are caught. LCH also has a high relapse rate.

Q. Is it a type of Cancer?
A. YES.. despite arguments over its classification over the years it is now recognised most places as a rare Cancer unlike other types of Histio. This is due to the type of cells (a dendritic cell that fights infection) that cause LCH. It can vary from mild (such as skin only) which is most common to serious and life threatening.

Q. Do you accept donations?
A.  We do not accept donations personally however we do lots of fundraising for various charities. You can find out more about our two main charities at teamdylan.co.uk

Don't Judge A Book By It's Cover..

Life isn't always what it seems, you never know the story behind somebody's photograph, their car, their clothes, their smile or their sadness. I've faced a lot of judgement this past year in many ways and sadly I know others have too. Here is but a snippet of what my life may look like to the outside world vs the reality...

I drive a different car.. yes it is a brand new one but no I don't own it. It is a motability car for Dylan to ensure we have a reliable vehicle that won't break down in an emergency. I'm not a car snob nor did we win the lottery or have a short fall.. It's a rental that will have to go back when Dylan is no longer entitled to higher rate DLA etc. I know people see me get out the car and think me a 'snob' but I assure you I am not! And if I'm wearing my sunglasses it's because I'm tired and the light is hurting my eyes!!

Yes I've lost weight.. admittedly I am only slightly under the weight I was prior to conceiving Logan but considering where I was a few years ago it is a shock to some that haven't seen me in a while. I didn't put on a lot of weight in pregnancy until near the end and it's dropped off very rapidly, and is still doing through stress if I don't ensure I eat enough.  Unfortunately after three children the weight has fallen off all the wrong places but not my 'mum tum' which is typical!! My clothes don't fit and I haven't the time nor finances to replace my whole wardrobe at once. No I'm not on a diet so I can't share my secrets with you.. stress is a lot to blame!

My hair is a different colour, in an attempt to take some of the stress of maintaining red hair away I decided to go a bit more natural with blonde highlights and have gradually built up to more blonde. This might seem like a hassle and high maintenance to some but for me it's actually easier than box dying my hair myself every few weeks.. I get to sit back and relax for an hour every six weeks while somebody does it for me. It's the only 'me time' I get!

Yes I am one of those mums that bakes with her kids and makes homemade cards and decorations. I google ideas for 'Elf On The Shelf' and try to come up with new exciting ideas.. not because I'm competitive but more my eldest monkey can remember what the sodding thing did three years ago never mind just last year!!

I have been called a 'Pinterest Mum' once or twice because I pin ideas on there for crafts and activities to do with my children. That is my way of interacting with my children. Some parents play cars, some wrestle and tickle, some go to parks every day on the way home from school. My children like a 'challenge' and to be kept busy so I oblige and you know what, I love it and it stops them squabbling. It is not for everybody though and to put things in perspective..

There are days I struggle to shower because the kids are just having a bad day. There are days they squabble constantly and I feel like all I've done is shout at them. There are days I spend all day working on my phone or at the desk. There are weeks we don't go anywhere except school.  There are days I long for them to go to bed so I can crawl in myself at 8pm.. I guess what I'm trying to explain is that we are all only human..

Parents don't always post photographs on the internet to be 'braggy' or compete with other parents. Sometimes it's genuinely to show family that might live miles away what the children have been doing. Others it's a way to back up precious memories, I personally know of somebody who had their phone stolen at playgroup which contained photos of their new baby that they hadn't yet put on the computer.. but thankfully they posted all their pictures to Facebook at the end of everyday.

We do take the children on lots of days out in the summer to theme parks etc. and I'm aware that can look like we do loads of stuff to the outside world, but what you don't realise is most of those are done via coupons or free tickets from The Sun newspaper. What people also don't realise is that those days out are done on my husband's days off because I don't generally have any friends that I meet up with at any other point. Those days out are as much for me as they are the children.

You won't see me outside at parks or walking to and from school this winter, the cold is too much for Dylan's chest. You'll notice I miss school plays, meetings, craft days etc from time to time either because of appointments or because I'm so exhausted I forget. I don't always attend playgroups anymore and when I do I tend to sit on my own in the corner because I'm too shy to make new friends.

Do not judge a book by it's cover, or it's photographs! That mum bottle feeding her newborn doesn't need to justify herself. The mum whose child looks like they are wearing dirty clothes may well have just spent hours playing at the park. That family that struggles to meet ends meet might spend hours sitting reading to their children giving them quality time over monetary gifts. The mum that just posted a photograph of massive stack of presents may have saved all year and got lots reduced in the sales, what might look like loads may have only cost £50-£60 as opposed to the tiny stack somebody else photographs, containing iPads, expensive lego sets, mobile phones etc.

As long as you know in your heart that you are the best parent you can be for your children then please try to pay no mind to the comments of others, and try not to pass judgement in return.. <3