Wishing The Days Away vs Wishing Time Would Stand Still

Today marks six months without a chest drain... yep you did read that correctly, six whole months! I remember posting the photograph on Facebook and wondering if we could manage more than the 24 hours we had previously during that admission. His overall record since this all started though was just 14 days and now here we are!!

Every single day that goes by is a huge milestone and blessing for us and I find myself sometimes wishing time away, counting down to the next milestone and clock watching..

One of the things I've found about raising a child with a chronic and potentially life threatening illness is trying to find that balance between wishing time would stand still so you can cherish every second with them, and wishing the days by faster so you can get to the next milestone, the next good result, the next treatment that brings the end of treatment that one bit closer, and hopefully that date where the illness is gone!

No parent wants their children to grow up and we love them being small.. but when you had been told your child had no future and then suddenly they have their whole life ahead of them again you just can't wait to see what kind of life they'll lead and what type of person they will be.

This week is Chemotherapy week again and today was day three of four.. once tomorrow's dose is done that will leave us with another three rounds in left in 2016. Thankfully the Hydrocortisone seems to be doing its job again with only low grade fever last night at points. We have also had a bit of a scare regarding Dylan being in contact with chicken pox at nursery though so we are more on edge with checking him than usual. He starts a course of antibiotics for that tomorrow to hopefully cover him from the exposure. Chicken pox can be dangerous whilst undergoing chemotherapy as it can be harder to fight off and progress to pneumonia so we are hopeful for him to avoid all that as we don't know how his lungs would cope.

Sometimes it's important to live in the moment, take deep breaths and just get on with life trying not to worry about all the obstacles you may or may not face. It's far easier said than done, but whilst you're busy worrying about the future or focusing on the past you are missing out on the present, and that is exactly what it is.. each second is a gift!

6 Months Post Extubation

Today it is 6 months since our superhero came off the ventilator and I could finally update everybody as to what actually happened Easter weekend..

I still remember it so clearly.. we had gradually seen the improvements during the course of the week after his Easter miracle and we hoped with all our hearts that we were heading in the correct direction. We knew the time for extubation was getting closer, his numbers were all in the right place finally and his oxygen and ventilation rates were stable and low enough to proceed if we could do it in time before he deteriorated again as there was a minor infection brewing..

It was our 7th wedding anniversary and we had arrived at his bedside hopeful that morning after a fairly peaceful night sleep (finally) knowing things were looking good. His overnight PICU nurse (who was one of my favourites to be truthful) had made us a card with his handprint and some paper flowers BUT even better had managed to get his ventilation rates down the final step overnight ready for ward rounds and decision time..

The doctors came round on ward rounds and without even saying a word one of them turned his ventilator from BiPap to CPAP then looked at us and said "let's push for extubation today, this is our window let's not miss it". Both myself and Mike looked at each other with tears in our eyes..

The day wore on slowly and things were checked such as chest drains etc and sedation was stopped of course. It was such a waiting game and we couldn't bare to leave his side.. Finally at 5.30pm the tube was out and he was extubated!!

Our amazing boy has taken leaps and bounds since that day and he makes me so happy and thankful. I didn't believe in miracles before all this but apparently I gave birth to one!

I do sometimes get upset thinking back to Easter weekend though (obviously) and how we were literally seconds away from loosing him. But despite ALL of that the thing that upsets me most and tears me up inside is knowing that underneath the muscle relaxant over Easter he was awake and probably very frightened..

Imagine lying there unable to move, open your eyes or even breath and then feeling what is going on and hearing all the sounds and people around you. Whilst he shouldn't have felt "pain" much like in a csection there is no doubt he would have had some awareness and he must have been so so frightened.. hence the high heart rate and that he almost went into cardiac arrest. I feel awful about it all, despite repeatedly telling the doctors I suspected this to be the case, but they assured me it wasn't!

I just hope our voices, songs, familiar dvds and stories brought him some comfort and helped him feel safe and loved. That's the problem with muscle relaxant though, it literally paralyses you to enable the ventilator to do it's job without your body fighting it and until it is turned off (which is risky itself) there is just no way to know. Ironically we only turned it off as part of the process of turning life support off but I am so glad we took that step and found out he was awake so they could sedate him properly and let him relax and heal..

That was obviously all he really needed alongside some better stomach medication that Daddy had also been saying for days!! Sometimes parents really do know best and not all patients are 'text book' cases! ;)

Hydrocortisone 1 - Cytarabine Syndrome 0

This week was chemo week and thanks to the addition of Hydrocortisone before each dose we managed to avoid the usual high temperatures and Tachycardia associated with Cytarabine Syndrome which was fantastic! Wednesday evening he suffered a few low grade spikes but they soon went after a few minutes and we had a fairly smooth night. I still slept in my clothes as I usually do on chemo week 'just in case'.

I kept him off nursery on Thursday morning just to be 100% sure he was over the 'bad patch' where we usually have issues. The issues usually start at 6 hours after the 2nd dose and continue for 12 hours afterwards so by 10am I knew he was fine and wished I had sent him in as he was bored!

We now only have 4 rounds of Chemotherapy left this year.. unfortunately the last one starts on my 30th birthday but needs must. We still don't have an end date as the goalposts keep moving. LCH is so unpredictable so the plan is to do another CT scan in March sometime, this will be after 12 months worth of Cytarabine, and then decide from there. He may then come off this protocol and change onto another or he may continue on it for another 6 months before changing, we just don't know yet.

It's hard to think about the future and the end of treatment when we don't know when that may be.. we have no way to know how many rounds to go, how much improvement to expect next time or when he might get his central line removed. We have to focus on taking every day at a time and seeing every day for the blessing it is and not focus on the negatives surrounding the treatment.

I haven't been back to Little Nippers playgroup since Dylan started nursery.. I am wary of being too far away from the school at the moment in case they needed me in a hurry. I'm also feeling a little like I am starting all over again and I am hesitant to make new friends because of all the baggage I come with! I'm sure I will feel more like myself again soon and be out and about more but for now I am just focusing on my family and self healing my emotional wounds.

Dylan amazes me every single day, he is enjoying nursery and being a big brother. He is back to being fully toilet trained and is eating much better. Even his behaviour is improving now the Prednisone steroid has stopped. Some days we are even down to just four medicines a day! He is loving the freedom of no oxygen at night and frequently fidgets around the bed in his sleep. The only downside is he now gets himself up super early, rather then having to wait for me to get him, and often sneaks into our bedroom!

Staying hopeful for more 'normality' amongst the chaos and more smooth chemo weeks.. <3