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