Outliving Your Children

This past two weeks I've been reflecting a lot more on last year and have found myself questioning the future. Easter is a time for resurrection and new life but for so many that is not the reality and they are instead facing the end of their lives or their children's..

No parent should outlive their children but for so many it is a reality. It's a reality, that I think, it is easy to be oblivious to if you've never faced it. I've faced miscarriages before but even that didn't prepare me for the world as I know it now. These things are the things that often people think 'it won't happen to me' because it isn't talked about. The taboo of baby loss is slowly being broken thanks to charities such as Tommy's and Count The Kicks etc and I think that this should be the same for all child loss for whatever reasons. 

I follow lots of families in similar situations to us, some with children with Cancer(s), some with chronic illnesses, some with babies that haven't survived after birth and some with disabled life limited children that are currently 'making memories' whilst their precious children are receiving end of life care. It breaks my heart and even though Dylan is doing well now in comparison to last year, I find myself worrying about his life expectancy with the damage all this has caused to his body.

This is why we try to focus on making memories with our boys and enjoying as much time together as possible. We purchased Merlin annual passes in the sale this January to enable us to take the boys to the theme parks that they love as much as they wish without the worry of money (besides petrol of course).. It is a small way to make up for the fact we cannot take them on holiday abroad properly due to Dylan not being allowed on a plane. Mike had the first week of the Easter holidays off and we made the most of that and tried to fit in lots of activities which not only help make memories but also keep our minds busy and too full of love to dwell on the negatives. Sadly these thoughts don't stay away too long though.

Dylan's birthday is next week and I remember being too scared to even buy his gifts last year in case he didn't make it. It makes me wonder how many birthday's lie ahead of him. Will he make it into adulthood? Will his lungs be good enough to support his growing body? Will it come back again? Am I going to outlive my child? The answer to that last one is probably.

There are no real answers or statistics for Dylan as he is so rare. I only know of one case like him that are now into adulthood and doing well but that is ONE case! All it'd take would be him to decide to smoke as an adult and it would likely come straight back.. that is why people aren't allowed to smoke around Dylan because even though it didn't cause his cells to act the way they did, it could reactivate the disease.

You cannot live in the past or the future only the present. The past is painful, the future is frightening but the present is perfect right now. Every day I pray for another perfect day. And I pray other families I know get another day of making memories..

 

Charlie

I have been asked a few times for my opinion on the court case and situation of baby Charlie and I have refused to express any form of opinion. We were even invited to the BBC to do an interview for today on the matter, as parents who have been in the situation. We already had plans to take the boys out but to be honest I would not have wanted to be interviewed on the subject anyway.

The reasons for this are varying but some of which are of a personal nature from myself. Having previously had my words twisted and feeling personally attacked by comments I did not want to be back in the 'limelight' nor open myself up to more abuse. I have had some horrible things said to me over the last 6 months, some of which have caused deep emotional scars and left me a different person unable to socialise properly with others but I digress a little.

I also feel my opinion would always be seen as coming from the mother who 'wanted to turn off' her son's life support therefore it will paint me as biased and potentially unsympathetic to the parents' cause which is NOT the case at all. It is an impossible no win situation and I think the parents have been so strong in their fight, and I hope their strength helps them through what lies ahead of them next.

Our situations whilst similar were also different and unless you know all the facts it is impossible to side with the parents or the doctors and give a fully informed opinion. The truth of OUR situation was that Dylan was suffering and deteriorating rapidly. Putting aside his 'miracle' recovery for a moment and just looking at the facts of the 48hrs prior to switching off the Rocuronium (paralysing drug)...

We had 'potential' treatment options to buy him more time such as Ecmo or transplant but Dylan's oxygen levels were critical even on the highest oxygen level and vent settings and every time we even tried to move him for an X-ray he deteriorated more so there was no feasible way he would have survived a journey to another hospital let alone either procedure. We had no other options it was that simple. We could either turn his life support off and pain relief up to let him slip away peacefully and pain free in our arms or we could sit back and watch him deteriorate, clearly suffering, and then go in to cardiac arrest suddenly as he was at risk of doing 'any moment' overnight at one point. Now tell me, if those were your only two options.. which would you rather?!!

Yes that never happened and by some sheer miracle turning off the Rocuronium was enough for us to see he needed more sedation*  and once comfortable his heart rate stabilised and he gained enough strength to start to fight back** gradually but that isn't what usually happens. I do not want our story to be the thing that provides parents in this situation false hope, especially now the ability of Intensive Care doctors may now be questioned more in these sort of situations.

*2-3yr olds are notoriously hard to sedate AND he also has potential EDS which burns off sedation even faster.. normally what he was on would be enough to sedate a young adult.

**this and blood tests confirming his organs were still functioning caused us and the consultant to STOP the process of removing life support. He remained on ventilation without the Rocuronium drug until he was stable enough to breathe by himself again 9 days later.

The ONLY comment I will make, for any parent facing such a heartbreaking decision, is this and it is partially a quote from an intensive care consultant.. There comes a time when you are doing things TO the child and not FOR the child. And that is what must be considered in these situations. Parenting means putting your child's needs first and yourself second. </3

Germs Germs Germs!!

When you know your immunocompromised child has been in contact with somebody that is unwell you literally feel like you are waiting for the inevitable. We do our utmost to protect and prepare for these situations but sometimes things are out of our control. Not all illnesses show visible symptoms until it's too late and the germs are already spread around. Other times sick children are dosed up on medicine and sent out to mingle with others because it's only something 'minor' and they seem fine.

Sadly what is 'minor' to one could be major to another and I think people genuinely do not realise this, because unless you've been in these 'Cancer Parent' shoes you wouldn't to be honest. This is why schools with sick children do try to police these things more so than their attendance records and they will try to make other parents aware but it isn't always followed. I'm lucky our school is pretty amazing with this but there are always risks and those who don't seem unwell to the outside world.

We have been lucky that the general cold viruses of winter have come and gone with no real effects. The one that hit us hard over Christmas was a D&V bug which was caught from somewhere outside of school. Sadly this what I'm anticipating we may have caught unknowingly now. Dylan doesn't handle being sick very well, he panics that he can't breathe and then ends up hyperventilating (which is not good for his lungs) and almost passing out.

Of course there has been numerous Chicken Pox incidents and we are now at the peak of that season.. as predicted Dylan starts his third course of preventative antibiotics this weekend because of contact with Chicken Pox again, but that is impossible to avoid because you are contagious for 48hrs prior to any symptoms or spots. This is why it is such a common childhood illness but it can have devastating consequences for people with low immune systems.

Truthfully anything contagious that causes a fever is a danger to Dylan.. sadly this is one of the most common things children are sent out into the world with after a dose of calpol. Oncology patients aren't allowed to be given calpol, even if they develop a fever. A fever is one of the first warning signs of serious infection and in patients with a Hickman Line or Port it could signal a line infection which can be VERY dangerous as of course it is a direct line to the bloodstream. Calpol reduces fever and therefore can cover up serious underlying issues. This is in fact one of the things that happened last March as Dylan was having paracetamol for pain relief so his fever was masked by this and we weren't aware he had an infection until it was serious.

Dylan also has previously had what is called a Febrile Seizure because of a fever. These are more common in under threes (some people state under fives) but if you have had one before it can indicate a person is more prone to them. It is the body / brains reaction to a rapidly rising temperature. Dylan's febrile seizure(s) caused him to stop breathing and need CPR and ventilation so I would rather not have that happen again as I do not want to be back where we were last Easter. I wouldn't wish that on anybody.

Keep us in your thoughts and prayers that we survive the night / weekend with no adverse effects of these germs he has been in contact with. We were supposed to be attending a birthday party tomorrow but IF we make it through the night with no illness I will likely not be sending him as it is mostly nursery children so I'd rather not risk more potential D&V exposure should we be lucky enough to avoid it. If he is well enough it would be wonderful to get outdoors and enjoy the sunshine! <3

*Apologies for the double posting tonight, I'm making up for lost time now I have a (half) working app!!

Lost For Words Today

On my way home from shopping today I drove past a funeral procession waiting to start it's journey. I knew instantly it was clearly for a child and it hit me particularly hard this week as my emotions are running high. I cannot even begin to fathom how the family must be feeling right now. If for any reason you come across this blog, I know you will have heard this a thousand times over but.. I am so so sorry for your loss. And I do not say that with empty sentiment I promise.

Last March I sat planning my child's funeral, I don't talk about that side of it much but I did. It was the only way I could process the situation. I had no control over what was happening to Dylan and planning what I would do, say, wear, sing.. those things I could control and in the hopelessness of March 24th-28th it seemed inevitable. We were lucky, others are not and I cannot imagine walking in those shoes..

Now that part is over, the really hard part begins for those families.. the living every day from now onwards. I cannot offer any words of wisdom, any little anecdotes or quotations that might help because truthfully if you haven't walked that path you simply do not know. We got a glimpse of that path briefly and took a few steps but we never saw the full journey ahead.

I do however strongly recommend anybody wanting support following the loss of a child to visit www.sayinggoodbye.org

Love and prayers, The Askin Family xoxo

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