Contingency Plan

I have been busy trying to come up with a plan just incase we end up with an impromptu trip to the hospital.. We are so close to Christmas any issues now would mean we would be in for Christmas Day again. Last year we only went in at lunchtime so the boys had obviously opened all their gifts but now we are worrying how it would all work?

The theory is the other two would have to open their gifts at home without Dylan because they are far too large (and too many thanks to us over compensating for last year) to take with us. We will have to just take a few to the hospital for Dylan to have on the morning from Santa then bring the rest over slowly.

I have packed his main three gifts from Santa into a bag along with the chocolate gifts 'just incase' so they are easy to grab on the way out the door. They are the gifts he cares most about receiving and will keep him plenty busy for a good few hours at least. We always have the emergency suitcase in the car which has clothes for myself and Dylan plus basic toiletries and packets of microwave pasta so I wouldn't have to worry about any of that at least!

Today is potentially our 'worst day' and usually he starts to feel rotten 6 hours after his second dose but the Hydrocortisone has been working well against this lately. We have accessed his other line today as we alternate which one we use each day so any potential bugs in that side would have their effects on his system tonight usually too.. Hopefully this means if we are still at home in the morning then we stand a good chance of avoiding a Christmas admittance.

The boys broke up from school yesterday so we are a good 24 hours clear of any germs from there so far and today we have literally just been for lunch and to some shops, we are avoiding mingling with other people too much this week!! Tomorrow I need to make a quick dash to Asda and the boys could really do with a haircut but then we will be hibernating in the house until New Years Day I think.

Everybody is in fairly good spirits and excited so let's hope nothing spoils it for them this year. I personally will take whatever life throws at us but I really think the boys deserve a happy Christmas this year after everything they have been through.. <3

The Christmas That Shouldn't Be..

T-minus one week to Christmas, in fact this time next week it will all be over.. but I am just waiting for something to go wrong.

My husband is on almost constant late shifts because of his job and the busy time of year. I've taken to going to bed at 8/9pm ish in my clothes (just incase) and attempting some form of broken sleep until I know he is on his way home and then I relax a little..

I've gone from checking his sats 3/4 times a day to double that or more if I'm having a particularly bad day. Checking his temp more than usual and now checking his line clamps, that are VERY securely taped, over and over again. I think the closer we get to Christmas Day, the day this journey really began for us, the harder it becomes to put the past behind us. Hopefully this will fade away in the new year, but that also brings it's own milestone dates.

Somebody once wisely said, this will always be the case in some way. There will always be another milestone, another important date. Even after treatment may finish it'll become.. 'six months post treatment' then 'one year, 'two years', etc. There will always be the fear of relapse. Some relapse almost instantly, others take years. The highest rate is usually within the first three years but Histio is the Honey Badger of all diseases and does whatever the hell it likes! It may come back in the same spot, it may pick a whole other organ to attack. It may never return.. nobody knows.

Those are the things you cannot worry about. You could be hit by a car crossing the road just as easily. If you spend your whole life worrying about the future it ruins the moments. The past also has a nasty habit of telling you, 'you should have done this' or 'what if you'd done that?' and those voices are a little harder to ignore. We constantly question whether there were any signs of symptoms leading up to Christmas Day and that is what I am doing a lot right now and making sure we aren't missing any new ones that signal any issues. I do not want an ambulance ride for Christmas this year please Santa.

Bloods tomorrow morning, these are being done at nursery again. I will be checking his clamps are taped properly the second he walks through the front door!! Then nursery again on Tuesday but then they break up so straight off to the hospital for Chemo at lunchtime and we will be taking treats with us to give out all being well. After it is done we will bring home his last three doses for 2016 which the community team will give the rest of the week.

We are hoping for no infections, good counts, no reactions to chemo or heaven forbid a collapsed lung (it'll be 8 months without a drain if we make it to 5pm on Tuesday).

I know lots of parents are spending this Christmas at the hospital this year, we did last year and I would like to avoid it if possible. BUT I also know a lot of parents are spending this Christmas with a child in heaven and my heart goes out to them. I feel a deep pain for them that this time last year I wouldn't have understood. Everybody feels sad when they hear of a child gaining their angel wings but as a mother whom has stared into that abyss from the edge I feel so much in my heart for their parents that it brings me to tears and I cannot even comprehend their strength. My heart goes out to all of you!

All I want for Christmas this year is a relatively happy and relaxed day with my beautiful family. Preferably all happy, healthy (ish) and in good spirits. If we end up in the hospital it's fine, it wouldn't be ideal but it's fine in the grand scheme of things because let's face it... it could be worse and it so very nearly was.

Flashbacks & Nightmares

For those that have suffered a traumatic event it is often not worry of the future that keeps them awake at night, but flashbacks of the past..

Of course the worry of the future is still always there but in our heads we can rationalise that. We can tell ourself things will be ok and talk ourselves through all the reasons why or the proof of improvement. You see those suffering, loosing their fight, living in pain everyday and you can tell yourself to be thankful and grateful because every day is a blessing and others out there have it so much worse.

But the past has a way of creeping up on you, catching you off guard, and sometimes taking your breath away and setting your heart racing. You cannot control that, you cannot talk yourself down from the ledge because sometimes you don't know what put you there. You just need to ride out the storm..

For me personally the flashbacks and nightmares are getting worse as we approach the holiday season. I think this is because it is where it all began for us and the fact that we have been told numerous times that Dylan wouldn't be here this Christmas. Even back in January, before there were any 'real' life threatening moments we were advised he may not see out this year.

Yesterday I was in the kitchen making ham and cheese sandwiches to take out with us.. All the Christmas decorations are up like they remained throughout early January last year.. I suddenly got a flashback of making ham and cheese sandwiches to take to the hospital D ward and put in their sandwich toaster! Sounds silly and just like a normal memory right?.. but it caught me completely off guard and instead of feeling like a memory it felt as if I was back in that moment and sheer panic came over me and my heart started racing. Until I heard Dylan playing in the lounge which snapped me out of it!

This happens at night, most nights.. I will dream I am asleep in the parent room around the corner from PICU and I'll wake up in a cold sweat panicking that I've got to get back to his bedside until my eyes adjust and I realise I am at home. I also sometimes dream that he didn't make it, like last night. Not a dream that something will happen in the future, it's never ever about the future, it's the past that haunts me. Waking me up scared from a dream that he didn't make it, looking around the room, checking he is in his bed, realising it is just a dream then falling back asleep and slipping straight back into that same dream. It is exhausting..

Of course Dylan is doing great. There is no clinical reason that I should be worrying about him at this moment.. I don't always post updates at the moment because it is a lot the same week in week out. Bloods on a Monday each week then one week of Chemotherapy which runs Tuesday to Friday now then a two week break. Sometimes his blood counts are normal, sometimes they are low. Sometimes he is tired, sometimes he feels sick. He has had numerous viruses (thanks nursery and school) but is handling them surprisingly okay. We haven't needed to go back on any oxygen in almost three months. Sats are good, appetite is mostly good. He is having physio still and progressingly slowly but surely. He is settled into nursery and doing well. These things all help keep my anxiety about his future in check and live in the moment, blissfully! I am a realist and I know things can change and something small could tip the scales but life is about living and not letting the worry of the future control you. I just wish the past would leave me alone now!!

Why Friends May Have Stopped Calling..

As a family of a sick child you may find that your friends stop visiting, your family stop calling and the people that have always been there for you seem to disappear...

This isn't because they don't care it is more likely that they don't know what to say.. They knew you before all of this happened and whether you choose to admit it yet, you are no longer that same person and you never will be again. Your friends and family don't know this 'new person' and don't know how to make you happy, where you can and can't go, what your schedule has now become and all the new needs and stresses your life now brings with it..

Whilst your life has stood still in the moment of diagnosis, the hospital visits and the treatments.. theirs have carried on. They no doubt have their own issues, stresses and changes happening around them but they will worry about burdening you with all of this and feel insignificant in comparison. You can pretend that you care, but we all know *sometimes* we do find ourselves internally rolling our eyes when somebody posts on Facebook that their life is over because "they've run out of cheese for the party" but that doesn't mean it hurts any less when they unfriend you even though you haven't said anything wrong. Is might be that you just simply haven't said anything at all..

You'll probably find yourself avoiding them at points.. Shutting down, rarely commenting or posting on Facebook and hiding from the world are just some of the things we all do in our moments of absolute despair and when your friends and family don't reach out or visit you get upset and then shut them out more then of course making the situation worse as they will assume you want to be alone. Fact is nobody wants to be alone so if you're a friend of a family with a sick child PLEASE just send them a message occasionally.. they aren't deliberately 'not caring' about you they are simply overwhelmed and probably feeling a bit hermit like!

The absolute truth is that NOBODY understands what you are going through except maybe those that have been there or are still going through it themselves.. but then sometimes we don't want life to be all about these illnesses every day and we want some normality to be built around the chaos! That's where making new friends can help.. if you feel strong enough to go out there and make some! They will understand from the outset who you now are and what your life entails. You don't have to relive horrible events if you choose not to but you get to say.. "This is me, this is my sick child and this is our life. I'm not looking for sympathy or to talk about it I just want to focus on enjoying life. We are free at these points and we can do these things if you're interested I'd love to be friends and meet up?"

Feeling alone during the hardest parts of your life can be tough for anybody and you may be feeling like people don't care. If you feel this way then I sympathise with you and I send you a virtual hug.. <3

Christmas Countdown

This year Christmas is going to be an emotional one in our house.. Memories of last year, all the battles and trauma that followed and all the pain we've faced in 2016. I think we will be glad to see the back of this year in some ways but we are truly thankful that we still have Dylan with us so our emotions are definitely running high as we approach the festive season..

Christmas Day 2015 was a disaster.. we had worked so hard to make the build up to Christmas magical like we do every year as it is my absolute favourite time of year. Not because of the gifts but the whole feeling that surrounds it of family and warmth and hope for the future. The way the children's eyes light up at the fairy lights on every house we pass in the car, the whole 'Elf on The Shelf' tradition that has them giggling each morning, the baking, the crafts, the events happening everywhere. Whether it's from being a December baby myself I don't know but I've always loved Christmas until last year.

Dylan wasn't himself and was miserable opening presents. He was tired and moody and we didn't know why. He didn't want his lunch and started to get sick and hyperventilate. That's when we realised there was a problem and took him to the walk in clinic, followed by an ambulance ride to A&E and that was where this journey all began. After an X-ray we were quickly moved into the resus bay 'just incase' and were told Dylan had a collapsed lung and it appeared that his lungs were likely covered in cysts called Bullae.. another ambulance ride to QMC and theatre just before midnight for his first chest drain. We spent the rest of December and the New Year in the hospital..

Of course you know the rest of the story.. despite attempting to redo Christmas in January it wasn't the same with the big black cloud of a potential terminal illness hanging over our heads..

Now fast forward to this year and myself and Mike are determined to try our utmost to make it special not only for Dylan and Bryce who missed out on so much last year, but also for Logan's first Christmas. We've gone overboard with shopping, started planning our ideas for our 'Elf' each day, planned lots of crafts and baking and we have brought at Christmas jumpers for the kids. Truthfully we've even watched a few Christmas movies already too!!

Yesterday the two eldest boys helped the wonderful Caroline Blake switch on Derby Intu's Christmas lights and I have to say it was an amazing experience we are so grateful for. They enjoyed every second and we hope this marks the start of a joyful festive season and hopefully a happy new year. There will be some sadness surrounding painful memories and thoughts of those friends lost along the way and those far away but there will also be so much joy and happiness that the two will balance out and no doubt tears will be shed for both reasons.

We do have two cycles of Chemotherapy to get out of the way in December first.. one runs from Nov 29th - Dec 2nd but the final one of the year runs Dec 20th - 23rd which is so close to Christmas it makes me nervous! If anything goes wrong that cycle such as a bad reaction, fever or line infection then we are looking at a stay in the QMC again like last year. But truthfully after almost loosing Dylan at Easter, all that matters is that we are all together on Christmas Day, no matter where that may be!

We didn't dream that we would still have Dylan with us this year and sadly not all families have their loved ones and children at Christmas so it's important during all the festivities to remember to think of those no longer with us and be thankful and grateful for everything we have.. <3

The Elephant In The Room

I think it's time for me to address the elephant in the room.. or more the media, which is the article the Daily Mail printed. If you haven't seen it you can find it on google. It is a very accurate article compared to all the rest out there, bar one misprint, but instead of focusing the story on Dylan's recovery they also focused it on me..

"My guilt at giving up on my dying son: Kerry wanted to let doctors turn off their son Dylan’s life support against her husband’s wishes.... but then he became the 'boy who came back from the dead'"

Firstly, I did not WANT to let the doctors turn off life support, what mother in their right mind would want that?!! Following the article I had some vile messages from people that hadn't taken the time to read on past that point and thought of me as a bad mother evidently. This really hurt me at the time and coupled with a few other issues such as friends turning their backs on me and a few sleepless nights with Logan I was in a bad place for a while.

The truth is.. I thought my son was suffering! I was told he was dying and convinced repeatedly by nurses that we were potentially being selfish and cruel. They even told us of stories where they have had to take parents to court that refused to accept their children were only being kept alive by machines. Of course I didn't want to lose him I was completely heartbroken. I kept reading story after story of miracle recoveries and hoped with all my heart for one but I couldn't bare the thought of watching him go in to sudden cardiac arrest and felt letting him slip away peacefully was more humane. They had talked to us above how it would all go ahead and all the ceremonial aspects and support etc. I felt there was no other option besides sitting there and waiting for his heart to stop which felt wrong.

Unless you have been in our shoes then you cannot possibly understand, it is like literally being torn in two.. you want to fight every single second until there is no fight left because you cannot comprehend the thought of life without them but you also love them so much that you'd rather put yourself through the heartbreak of losing them than watch them suffer and cause them any more pain unnecessarily just for your own selfish needs. I just didn't want him to suffer anymore because he is my baby and I love him and that is the beginning and end of it all.

Yes I did and still do sometimes feel guilty knowing now that he did fight back in the end BUT had we not taken that first step and stopped the muscle relaxant we wouldn't have known he needed more sedation and with a heart rate of 200+ it was a miracle he made it through the night before, he WOULD have gone into cardiac arrest had it remained that high much longer and he would NOT be here today. So truthfully in taking that step towards turning life support off we probably saved his life and that is what I try to take from it all now and I refuse to be defined as the mother who 'feels guilty' or 'wanted to take her son off life support' because I am so much more than those labels!!

Halloween & Fireworks

It's often the simple things in life that make me feel lucky, the things we often take for granted. This last two weeks there has been a lot of those moments in our house as we approach the holiday season..

We have always taken every opportunity to celebrate occasions with our children and this year has been no exception so far..

Despite not having any parties to attend and not being able to go trick or treating properly, we still managed to make the most of Halloween with a visit to a local farm's spooky trail, pumpkin picking and carving and a trip to a theme park with a trick or treat trail. We also dressed up at home and decorated the house and had 'party' food and spooky films!!

The same goes for Bonfire Night.. unfortunately we missed one display we wanted to attend and of course we have two small dogs so we wouldn't have fireworks at home. But we made chocolate apples like we have previous years (even though more expensive than just buying them it's definitely more fun) and we did go to a display near my sister and her husband's house with the family which was lovely..

Watching the kids kicking the leaves, carving pumpkins with Daddy, pulling silly faces, searching the sky for fireworks and making and munching chocolate apples makes me feel so warm inside despite the cold weather! I have moments, particularly on special days, where I look at the three of them and think how close we came to only having two children on this earth. Those thoughts use to make me sad and make me relive the awful events of Easter weekend but now they make me smile instead and all I can think is how insanely lucky I am and how much I adore those cheeky (chocolate covered) faces!

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

Feeling Lucky

Scrolling through my Instagram newsfeed each night before bed I am greeted with lots of images based on my previous hashtags..

Image upon image of children in intensive care from either Cancer or other diseases such as heart disease, cystic fibrosis, lung disease etc. and those that were just born too early and not strong enough. Images of children on ventilators that make me think back to those times that was us. Images of children that look like they are sleeping peacefully, with tag lines reading "we miss you" or "pray for this child who lost their fight". Images of parents holding their beautiful children for the very last time..

Whilst it reminds me of all the horrific parts we've faced in our journey so far, it also makes me think how lucky we I am..

I am SO lucky.. my child is a miracle and he came back from the brink when I know that he technically shouldn't have survived. We are lucky to have him in our lives each and every day even despite the illness and it's hurdles. Even those horrible memories, however painful, are a reminder that we survived it all together.

I am SO lucky to have two more boys that are so very special in their own ways. I truly believe they were all given to me for a reason.. Bryce is my strength, my anchor in the storm. Dylan is my hope, my guiding light in the darkness. And little Logan is my happiness, my sunshine on a rainy day.

I am SO lucky to have a supportive husband who doesn't hold against me the moments I faltered or made wrong choices. A lot of marriages wouldn't have survived what we have, sadly I've seen first hand numerous families ripped apart in Paediatric Intensive Care. 

I am SO lucky to have family close by that are willing to help out whenever they can. I don't know what I would have done without them taking care of Bryce and coming to support us during the hardest parts especially.

I am SO lucky to have such an amazing care team from the doctors to the nurses and the support workers and charities. We are blessed to have a network of help and advice and that our team are always willing  to seek the best advice out there.

I am SO lucky to have found a support group for this diagnosis that have been invaluable in their knowledge of the latest treatments, side effects and dealing with every day life throughout the chaos.

I am SO lucky to have a roof over my head, heating and hot water, a car to get to appointments and in case of emergencies, and food in the fridge and freezer to keep us strong.

However hard life gets, however tough each day may seem, I personally find that it can help to take a step back and think of all the things in your life you have to be grateful for. Your worst day might be somebody else's best day.. 

"If you are still breathing then maybe today hasn't been so bad.."

Home Learning Week

Dylan didn't attend nursery this week as they weren't fully ready for him, he is due to start on Monday morning fingers crossed..

The Very Hungry Caterpillar provided a base story for our learning and activities on Monday and Tuesday.. A favourite story in our household and one I knew Dylan would remember from prior to all the drama. We used the following song alongside the story to help teach the order of the days of the week..

"Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday too, 1, 2, 3, 4, 5, 6, 7 days, each day different and every day new."

This is a song I know they teach at the school from when Bryce joined them so it would be handy for him to have a grasp on the rhythm of it at least before he attends.

We did a range of both learning and fun activities including pipe cleaner caterpillars to practice fine motor skills, baking, painting, collecting different shape and colour leaves and doing leaf rubbings.

We talked a lot about counting and counted along with the story and whilst doing our activities. We also talked about the colours of leaves in Autumn and what happens to them.

Tuesday I also had a meeting at the school along with the Kite team training to ensure that all my concerns were aired and I have to say I am very very happy with how it all went and am feeling a lot more relaxed about him attending when he can.

Wednesday we went to Dylan's last session at Little Nippers, for the most part he really enjoyed himself but got tired and tearful towards the end as he had been up since 6am! A quick 40 winks soon sorted that out when we got home.

Thursday we had tickets for Alton Towers that we had collected through The Sun newspaper tokens. Daddy couldn't get the day off work so I took Dylan and Logan by myself. As well as going on some rides we spent a lot of time in the sensory garden looking at plants and colours.

Friday we revisited the book and song from Monday and Tuesday and we also spent some time playing with playdoh looking at colours, shapes and working with plastic scissors to cut the playdoh.

A relaxed first week of 'home schooling' but hopefully it will ease him into nursery on Monday morning now we've added a bit of structure to our mornings at home.

Cytarabine Syndrome

Without fail you can count on a fever on chemo week in our household, infact I can almost pinpoint exactly when it will happen now! It makes chemo week extra stressful and puts him at increased risk which scares me every cycle and I struggle to relax until the following week..

Dylan's chemo schedule is currently back to being.. Vincristine on a Tuesday alongside Cytarabine then further doses of Cytarabine on Wednesday, Thursday and Friday followed by a two week break. They had changed it to run Wednesday to Saturday but his community care has now moved over to Derby who don't work Saturdays.

The fever always starts on day two after the second dose of Cytarabine and peaks at around 4-5pm going as high as the 40's which is of course dangerous. He also gets very tachycardic for a few days. It has been this way since his steroid pulses stopped.. often steroids are given to counteract these sorts of symptoms. Dylan's had of course recently been stopped completely due to him having such high doses previously, as the body can then stop producing it's own which can also be dangerous also.

It's called Cytarabine Syndrome and it is when the body has an inflammatory response to the drug. It is treated with steroids of course, so after a meeting yesterday between the doctors, it has been discussed that he will have Hydrocortisone alongside his treatment now as opposed to going back onto Prednisolone. We are just waiting on the exact dosage information and plan from the Endocrine team but hopefully it will help us control his fevers. We will know more when the next round starts in two weeks time.

Dylan also had a follow up sleep study off oxygen last night so we are awaiting the results this week. He seems to be doing very well at the moment so hopefully it will continue and I can start to relax a bit more soon.. 

Let's Talk About PTSD

It is not just soldiers that suffer from PTSD unfortunately..

PTSD stands for Post Traumatic Stress Disorder so surely that signifies that anybody that has experienced something traumatic in their lives could suffer with this correct? Victims of abuse, extreme tragedy or distressing events can suffer from this horrible mental illness but it isn't talked about. Often parents of children with life threatening illnesses suffer in silence as it is taboo to talk about your mental health it seems when your child is the one with the "actual illness" which I've put into quotation marks because I've actually heard it said out loud!..

This is a mere snippet of what PTSD looks like in our household..

Sleeping in my clothes 'just in case' something happens and I need to phone an ambulance. Waking up repeatedly each night after having nightmares that something has happened or flashbacks of what did happen, that's if I can sleep. Not wanting to leave the house alone because of the fear that something will happen and it'll be all my fault. Checking on him every hour, some nights even sitting by his bed for hours on end..

Constantly reliving every horrible moment over in my head and beating myself up over nearly making the wrong decisons and wondering over the 'what ifs'. The sense of 'impending doom' that something is going to go wrong all the time. Seeing improvement on scans and instead of being happy actually feeling worse and more frightened..

Looking through pictures and wishing you had taken more. Crying, lots and lots of crying. Sitting in silence, not speaking to your partner sometimes because you can't process what is going round in your head..

Shouting at your children for bad behaviour then sitting sobbing wishing you hadn't told them off 'just in case' anything happens to them after the last thing you did was shout. Wanting to sit and hold your children every second of every day and being told you're smothering them..

Over analysing every situation possible to the point it gives you migraines. Pushing people away but being desperate for somebody to talk to. Feeling lost, feeling alone and feeling frightened every single day..

I wish I could write more eloquently and really make people understand how I feel.. but then I wouldn't wish this pain and anxiety on anybody. I just want to let anybody out there suffering from PTSD know that it is okay to talk about it, over and over again if needed. It really is okay to let it all out, and it's okay to get help.. For some people counselling can really help and I urge people not to suffer in silence..

That is why I created this blog, as a place to raise awareness of not only Histiocytosis but all childhood illness and how it effects parents and children. And a place to maybe one day help just one person out there feel that they are not alone..

"PTSD isn't the person refusing to let go of the past, but the past refusing to let go of the person.."

Home Education

Dylan didn't start nursery this week like many other children.. the nursery haven't had their oxygen training course yet, even though he isn't on oxygen in the day anymore but I digress...

Dylan is due to start nursery on Monday the 19th.. But Dylan has had chemo this week so if his blood counts are low next week he will not be going on the Monday as he will be too at risk from infection. I will then find out his blood counts for the following week on Tuesday 20th and if they are still low he will miss the rest of the week. You see his counts tend to stay low for up to 2 weeks after chemo, only just picking up in time for his next dose it seems..

He won't be attending nursery the majority of chemo week either.. Monday I won't know his counts early enough to decide whether to send him in but usually they are up enough so I might have to make a judgement call on that one. Tuesday we have to collect his chemo for the week ahead from the hospital and have his first dose. That could be morning or afternoon depending on their theatre list but hopefully if it is in the afternoon he can attend the morning nursery session. Wednesday is his worst day when he usually feels pretty rotten and spikes a fever so he wouldn't be attending as the risk of febrile seizure from a high fever is too great. Thursday he is often either in hospital from his fever or sleeps in late to recover. Friday his body is usually adjusted to the drugs so he is almost back to his 'normal' self, despite still having another dose to come, so he may attend that day if he wanted to..

Potentially I see Dylan attending nursery 3-4 days out of every 3 week cycle. That is a lot of missed days, missed chances to learn, to interact with other children, to progress his skills, to just be a normal child!!

That makes me a little sad inside, no matter how scared I am about him attending nursery I hate the thought of him missing such a big opportunity and potentially getting behind the other children. Whilst I cannot replace the interaction with other children I can try to help him develop and learn at home so I have started looking into home school resources..

You may see more blog posts focusing on that side of things as treatment starts to become more settled and hopefully we can start to control the fevers. I will share with you all what we've done each week and how well things have or haven't worked.

I am very new to this idea, so any resources you think I may find helpful please comment with the links or email them to me at kerry_askin@hotmail.com 

A Letter To My Son's Nursery

Dear Nursery Teachers / Assistants,

I know you must get tons of questions and concerns from nervous parents and think that we are fretting over nothing, but mine are a little different so please bare with me whilst I explain and try to convince myself that you'll keep him safe...

You see, I've nearly lost my baby.. more times than I can count on both hands in fact but six particular moments stand out and I have flashbacks of those every single day of my life. I am so scared of it happening again and not being with him to spot the warning signs. I have saved my baby's life on numerous occasions, as has my husband, because we've picked up on things that even medical professionals didn't see. I know you've had Basic Life Support training but I will show and tell you what his unique tell tale signs of issues are and I know what I am talking about so please do not think me crazy or paranoid and take note. Hopefully there will never be any major issues but I would feel a lot better if you knew everything just in case..

Have you stressed to the other parents the importance of not sending their children to school sick? What happens if you see a child that is clearly unwell will you send them home? If there is any cases of chicken pox you need to notify us straightaway as that is very dangerous to children undergoing chemotherapy..

I know you have been told the basics about his Hickman Line, but please make sure other children do not touch him near it or he will get very upset. If there is any water play please make sure he is wearing a full frontal apron and is fully supervised to ensure none goes anywhere near his line, the same goes for sand and paint really. If he seems to be touching it a lot or rubbing it please check it is not sore around the dressing and that the dressing is still secure. When he runs around a lot he can sometimes sweat the dressing off so call me and I will come and redress it straightaway..

He shouldn't need his oxygen now really despite you all being trained on it's usage. If in ANY doubt over his breathing please call an ambulance rather than just using the oxygen in case it is something more sinister such as a collapsed lung..

Please keep in mind that when he was on life support he lost his ability to walk and although he is now fully mobile again, he is still clumsy at points. With that in mind we also had to teach him to use the potty / toilet again. He has regained bladder control but he struggles with his bowels, particularly after chemotherapy.  To save his embarrassment at the mess that is sometimes created he is in pull up pants. He gets very upset when he has an accident as he cannot often help it, PLEASE be discreet if you need to change him, I would hate the other children to pick on him over it..

If he seems feverish please check his temperature and call me at anything over 37.5 as he can escalate from a low grade fever to a high grade one in a short space of time. He has previously had febrile seizures so if this happens put him in the recovery position and phone an ambulance. He may stop breathing and you may need to use your CPR training but I hope that you never will..

I am literally putting his life in your hands. Whilst he is deemed medically stable enough to attend nursery, I know how something minor may set him back and I do have PTSD so my worries are all escalated ten fold no doubt! Just telling you these things helps me relax just a little more but I am scared deep down of leaving him. I've thought about keeping him home with me, especially with the winter months approaching. I wish I could wrap him up in cotton wool and keep him safe from germs..

But I need to let him explore and learn. I need to let him enjoy the life he has fought so hard for. I need to let him be a child between his treatments and also interact with other children. But I need him to come home safe each day as we didn't fight this hard to then lose the battle over something trivial.

Sincerely,

A Neurotic & Totally Petrified, Overbearing & Overprotective Mother

The Moment of Truth

This week has been full of different appointments that would shape the rest of Dylan's treatment and his future..

Monday was the usual blood tests in preparation for chemotherapy week. 

Tuesday was the start of chemotherapy this week which included a dose of both vincristine and cytarabine. He wasn't too bad until 3am and then the fever started! Low grade at first 37.5 then 37.8 and eventually settled back down to 37.3

Wednesday was CT scan day!! The moment we had been looking forward to but also dreading! He was so good in the scanner lying still and holding his breath and the results.. well they were absolutely amazing! This means the chemo is working!! It is due to be reviewed soon so he may be able to go onto lower doses. It also stands us in good stead for our GOSH appointment next week.

He also had a fever when arrived of 38 but it soon came down to 36. Because of how it was only spiking and not staying high the general consensus is that it is chemo related now but of course they cannot risk just assuming that. We got home from our appointments by 3pm but by 5pm his temperature was on the climb again peaking at 40 so of course that meant back to the QMC we went!! They gave him IV paracetamol and then a further dose of oral paracetamol the following morning at 5am but then his temperature subsided and didn't return suggesting a reaction to his chemo again as we thought.

Thursday morning we got the okay to leave the ward and go to Dylan's clinic appointment about his steroids. A test was arranged on the ward that would tell us if his body is producing it's own steroids still or if it has stopped with being on them for so long and at such high doses at points. If his body is producing his own still it will mean he can stop taking them daily. If not he will have to move on to a different type and we will be trained on how to administer an emergency injection to boost his system if he became very unwell. We haven't had the results yet which concerns me that it may be the latter of the two options as the doctor did say she would phone me if he could stop taking them.

Back on the ward one of the doctors was concerned his infection markers were a little elevated in his blood work, but he had just had a cold and was still recovering. We assumed we were staying in another night! However late afternoon one of the consultants discharged us. There was also no word on blood cultures which after 48 hours means they were all clear.

We are especially glad to be home in time for a family wedding this weekend! Have a good one everybody <3

Temperature Spikes

Dylan got readmitted to E39 at the QMC on Wednesday afternoon after spiking a temperature whilst we were out. We were shopping in Farmfoods at the time and he had been complaining of tummy ache for a while so we checked his temperature.. it gradually went from 37.5 to 38 then to 39.5 which meant a call to the ward! We quickly abandoned our shopping, popped home for some clothes and his meds then drove over.

Despite sitting him in the car in just a t-shirt and pants with the air con on full blast and the windows all down he just got hotter, not helped by the heat outside either! By the time we arrived his temperature was well over 40 and at dangerous levels..

They took blood for cultures from his lines and did swabs. They then gave him IV paracetamol to help bring his temperature down quickly as he was starting to look awful, shaking and almost falling asleep. The doctor started him on a broad spectrum antibiotic as the results from the cultures would take up to 48 hours and that was a little too long to leave him in such a state in case it was anything serious! Thankfully he did not have a febrile seizure which we now know he is prone to, so that was a blessing at least..

He perked up with paracetamol but seemed to keep spiking the next day as it wore off and before the next lot was due but we managed to keep him comfortable and he seemed fairly happy in himself!

By yesterday morning he was running riot and not acting poorly at all! His consultant would have let us go home had he not spiked again when he woke up crying from a nightmare at 5am. So they all decided to hold and wait for the culture results to be safe, which were due to be reported by 6pm.

His nurse let me know last night that his results were all negative and he had no more temperature spikes over night. Prof. Grundy was on ward rounds this morning as it is his weekend on call.. he simply waved at us and said "off you go"!

It looks like his temperature was either down to something viral or just a reaction to his chemotherapy, either way antibiotics won't treat it. We also discussed Dylan's appointment with GOSH on August 25th and that he will be having a repeat CT scan now before we go. This makes me nervous but also excited to see if there has been any improvement.

The past few days/nights have been tricky. Mike can't really keep taking time off work so Bryce stayed at my parents and Logan stayed at the hospital with me. Luckily he was fairly settled once he did fall asleep at night, the biggest challenge was getting him to sleep and keeping him and Dylan both entertained in the day. I had to take Logan in the pushchair with me when I went to the toilet even!! It gives me a new appreciation for those with young babies in the hospital 24/7.. it really is exhausting!

Readmission

So after all the drama on Wednesday we got a phone call on Thursday afternoon just as the community nurse was about to do his chemotherapy stating that they had grown a bug in his blood cultures and that we needed to bring him in to the hospital for a weeks worth of IV antibiotics and not to give his chemo for now.

We quickly packed the suitcase and Mike took him in, thankfully he hadn't gone back to work yet or it would have been a lot more difficult! I stayed home with Bryce and Logan and then headed over Friday morning once Bryce was at school.

I am so proud of how well both the older boys handled it all.. Dylan was very grown up and went in very easily without upset simply saying "bye I go to the hospital get some medicine back soon" (until he got to the ward when he got a small bit tearful) and Bryce understood that it wasn't serious and that he would be home soon and he could see him at the weekend. Bryce missed him a bit at bedtime but on the whole took it in his stride whereas mummy was very tearful as it brought up all those memories of last time which to be truthful are still very fresh and raw.

We got to go out during the day yesterday and today as all his antibiotics are now down to just once a day. Whilst we were out today they arranged for the community nurse team to come out to give them at home and as he has been so well in himself since Friday we were allowed home!

We decided to take staying at the hospital in turns again the few nights we were in so we both got time with all the children. This won't be so easy next time as Mike does finally go back to work next week. It is really hard being away from any of our children whether it be leaving Dylan in the hospital with Daddy, or being at the hospital with him whilst Bryce and Logan are at home. It was nice to get a full night sleep Friday night though without feeding a newborn every few hours but of course it's also very hard to be away from a brand new baby that you are trying to bond with through all the stress and chaos!

As heartbreaking and difficult as it all is when these inevitable admissions happen, it all pales in comparison to the alternative of being without any of them such as we almost faced over Easter. I am thankful for every single second with all of them, be that in a hospital bed, wide awake at 4am stealing cuddles or discussing school and doing homework at 8am at the breakfast bar!!

Sickness & Fever

Dylan woke up in the early hours of the morning yesterday upset and very feverish. He had previously been unsettled all night, as he usually is on chemo week, so we went to bring him into our bedroom to calm him down but en route he threw up repeatedly on the landing carpet. His temperature was 38.8 which in the Oncology world means a trip to the hospital...

I rang the ward at the hospital first who advised me to take him in but to A&E as they were full. I expressed my concern over him having another febrile seizure like last time so they advised me to phone an ambulance if I was worried, so we did.

After lots of arguing with the operators over how Dylan's condition wasn't "life threatening" at that moment, despite how quickly he could deteriorate and the fact he has a medical alert on the system stating he needs an ambulance.. Mike ended up taking him via car, driving with him just in light pjs and the air con on and windows down.. the doctors weren't impressed at all that we'd had to drive him there!

On arrival at A&E his temperature was 38.3 so they moved him onto a ward and into a side room. The oncology ward was full so he went onto the respiratory ward instead. His temperature fluctuated all day with lows and highs up to 39.9!! Cultures were all taken but these take 48hrs for results so antibiotics were started and paracetamol was given to help keep him comfortable. There was no sign of any respiratory issues so the general consensus was that it was an infection, possible virus or just a chemo reaction so he was discharged shortly after 5pm with antibiotics and the advice to give regular paracetamol to keep him comfortable.

He still has a temperature at points today but seems okay in himself. He missed his chemo yesterday because of everything so will have an extra dose on Saturday this week. Hopefully today's dose doesn't affect him too much as he had a lovely settled night last night which he needs to fight off this bug..

Sleep Study 2.0 & Nursery Visit

Whilst I was in hospital after having Logan, the Respiratory and KITE Team arranged for Dylan to do a sleep study without his oxygen.. unfortunately this didn't go very well!

For a number of reasons Dylan's heart rate was very high. His oxygen levels were fine but there was concern he was having to work too hard to maintain them, hence the high heart rate. However, he was upset at night most of that week even with the oxygen and seemed to be reacting badly to his chemotherapy. The night they did his sleep study was the worst of the week and he was awake upset for hours so they didn't get an accurate result to use really.

So we repeated the sleep study again last Wednesday night.. we only just officially got the information today! Dylan's oxygen saturation over night was perfect, the only slight concern is that his reserves are still a little low, particularly on chemo week. So the decision has been reached to leave him on 0.5ltr for another 8 weeks and review before he starts nursery BUT only when he needs it now and overnight! This is a major step for us and means that unless doing anything strenuous or if he gets tired or unwell, he can have a tube free face and we don't have to follow him around as much!

Dylan also went to visit his nursery last Thursday for a stay and play session. He is due to start in September and we are awaiting funding for an extra staff member to help and support his additional needs such as oxygen (if he needs it then for any reason) and in case of emergency. Daddy took him to visit as I am still not 100% post csection should he have wanted lifting or picking up at any point. He absolutely loved it and didn't want to come home! He didn't really interact with the other children though which we have noticed he doesn't do since all of this has happened so hopefully nursery will do him some good.

I imagine I am going to be an emotional wreck in September.. even him going for an hour on Thursday got me a little bit emotional as of course just three months ago we never even dreamed we would get to experience all of this with him! Every milestone is filled with such joy but also sometimes sadness as we can't help but replay the events of Easter weekend over in our minds and feel that pain again, still raw and still very real.

Myself and Mike are clearly suffering from a degree of PTSD from the whole experience. Little things set us off like watching him interact with his brother or dancing and singing to his favourite songs.. we can't help but think about life without this little superhero and how close we nearly came to it. How long is this going to last? These flashbacks of that weekend, the imagining of how things may have turned out.. Months? Years? Or will it always affect us in some way. I guess that is the unknown factor and only we can face this and work through it together as a family now.

And Baby Makes Three (Boys)..

A few people wondered why we didn't attend playgroup on Wednesday.. don't worry nothing was wrong with Dylan we simply had other plans....

Our third and final boy (Logan Michael Askin) was born on 15th June at 11:43 weighing 7lb8oz making our family complete. I had known my section date since my hospital admission the other week but wanted to keep things quiet for a number of reasons so please forgive us..

1. Everything with Dylan has been so much in the public eye since February in particular because of how rare his disease is and how publicly he collapsed at playgroup so we wanted some private family time.

2. My sister was out of the country on her honeymoon and even though she knew my date I didn't know how quickly she would pick up notifications or picture messages on the day because of the time difference.

3. We wanted the boys to meet their little brother first before photos circulated online, they have both had such a rough time lately being apart and then this whole new person was entering their lives and we hadn't had a great deal of time to prepare them like we did last time around.

4. We didn't know if my preeclampsia would cause issues beforehand and whether I would have to be taken in earlier or whether there would be complications after the birth.

5. Dylan may have had issues prior to the birth such as a collapsed lung or infection etc. then plans would have obviously changed again.

6. I felt uneasy about the csection, I never actually wanted one it was suggested for medical reasons due my placenta abrupting with Dylan but the idea petrified me. I remember the epidural not working with Dylan and being able to feel everything then being given a general anaesthetic not even knowing if my son was alive still or not. The thought of the surgery itself and my PTSD from last time almost put us off having a third child and it took a lot of discussion before we decided to try and conceive again, then of course Dylan's illness threw a spanner in the works and added in more stress and worry than we had ever dreamed of!

7. This was chemo week for Dylan and he hadn't reacted very well to it this time around so we were worried about him and didn't want any extra visitors to overwhelm him or upset him even more than he already was.

We hope you understand our reasons behind the secrecy! Both boys adore their new brother which is so lovely.

Dylan has been a bit unsettled with me being away in the hospital and he hasn't had a good week with regards to his chemo this week either. He is very tired and achy from it and unfortunately it all hindered the results of the sleep study he had done on Wednesday evening so that will be repeated again at some point next week.

I can't imagine my life without these three beautiful boys right now and I pray that is something we never have to face the possibility of again..

"You're Crazy!"

Seriously, if one more person tells me I am crazy/mad/a glutton for punishment/going to struggle etc. I am going to scream!!!!

OBVIOUSLY if we had known about Dylan's condition beforehand we wouldn't have been having another baby.. that's just common sense really! We planned it out so we'd have the same age gap between all three children, we had always wanted three children. We had our 12 week scan THREE DAYS before our first glimpse into Dylan's illness and ever since all I've done is wish we weren't having another baby. There I've said it! Obviously I love him and am excited deep down for his arrival but life is going to be so tough and that worries me every day!

The more people that make comments, the worse I feel.. I already KNOW that I am going to struggle to cope so all these comments just reinforce that and add to my anxiety and my self doubt.

I genuinely don't know how I am going to manage but I don't really have much choice in the matter so please stop making comments without first thinking about the impact it might have on my already waning self confidence and belief. 

And as for strangers that feel the need to comment.. well truthfully you make me not want to leave the house sometimes! I don't know what it is about a certain generation that makes them so judgemental and makes them think they have the right to comment on every body else's lifestyles. I realise things were "different" in your generation and nowadays you are seeing lots of different walks of life but did nobody ever teach you that you shouldn't judge a book by it's cover? Or of course my absolute favourite.. if you can't say anything nice don't say anything at all!

Clinic Appointment

So not much has been happening recently to be honest which is refreshing! We've had no major drama and Dylan has been enjoying being a normal 3 year old, playing with his brother and going to parks and playgroups etc. Yes the oxygen is making everything more challenging and me being the size of a whale is not particularly helping but he has been mostly a very happy little boy.. you wouldn't actually believe how sick he has been to look at him now if you didn't know!

We called the QMC on Wednesday to get some information over Dylan's chemotherapy next week as we hadn't heard anything for a while and wanted to make sure we got an early appointment on the Tuesday and that hopefully somebody from Respiratory would be around to review him and his oxygen requirement. However, upon making this call it landed us a clinic appointment with Prof. Grundy who was now back from his hip operation...

Now, he went off on his 'sick leave' just after Dylan's seizure when as far as he was concerned Dylan was stable enough to be extubated.. but of course he deteriorated and that didn't happen as planned. He was spared a lot of the details whilst he was off but heard it all when he got back and he failed to see what all the fuss was about looking at how well he is doing now! This is what I mean about it being unbelievable, you wouldn't think it is the same child.

The clinic appointment was mostly a waste of time (in a good way) because Dylan is doing so well. Prof. Grundy didn't seem to care about the oxygen and basically told us to take it off if he doesn't need it!! I've said we will discuss it all and get Respiratory to check him Tuesday as I don't want to make any hasty decisions without them assessing him. He has also dropped a few of the medications off that Great Ormond Street suggested in case of transplant and he has stated he would like Dylan to have another CT scan before his reassessment by them in August.

This is a bit scary but we are going to attempt to do it without ventilating Dylan so lots of time will be spent this next two months getting him use to the scanner etc. This will show us how the chemotherapy is working, particularly now we are not on as 'intensive' a regime and hopefully may show that he won't need a transplant and therefore won't need 6 monthly reviews at GOSH.

But what if it shows that things aren't improving? That's something that Mike has been worrying about since Wednesday.. I hadn't thought about it until he said it in all honesty and I'm the irrational one usually that checks Dylan over and over throughout the night!

LOGIC would state that Dylan is improving, he hasn't had a chest drain in now for 7 weeks, previous to this he had not gone longer than two weeks without one since it all started and that was before he got worse and treatment began. He is getting less breathless, has more energy and is eating and drinking better. His sats are improving, his oxygen requirement appears to be going down. He sleeps better and his breathing overall looks better than it has done in the last 5 months total... But unfortunately logic and reasoning don't enter into it when you've been to hell and back as a parent and you can't help but feel it's all 'too good to be true' or that you're waiting for the other shoe to drop...

I pray that never happens, it would be cruel and unfair to get all this hope back, all this improvement and to be back to planning our future just to be hit with more bad news or another deterioration. I guess that's how our life will always be though to a degree, as is the life of any cancer patient and their family.. Even if the disease goes you never know if it'll be lurking around the next corner waiting to strike again!

Hospital Admission

..but this time for me! I rang the pregnancy assesment unit on Thursday morning after having had a severe migraine for 48 hours that paracetamol wasn't resolving. I arrived at 10.30am to find my blood pressure was high (138/91) and there was now +1 of protein in my urine. This all pointed to my preeclampsia being back again as with both Bryce and Dylan..

They kept me in for monitoring and slowly things settled down with rest but they were concerned about the headache coming on so fast and so severe so they wanted me to stay in overnight and have an MRI done the next day. The reasoning behind this being that high blood pressure / preeclampsia can cause blood clots and occasionally bleeding on the brain and with this now being my third pregnancy with these issues and I am now in the 'typical' age bracket for these issues they wanted to double check.

The MRI didn't get done until 4.30pm Friday but it was only a short one, approximately half an hour long. I can't for the life of me understand why they put music through the headphones though because as soon as the machine starts you can't hear any of it! It doesn't surprise me they sedate children for it either, like Dylan, it is all very claustrophobic and a little bit overwhelming even as an adult. It's also very difficult to stay still when you've got a baby doing acrobatics in your tummy!!

I finally got discharged very late yesterday, apparently the MRI was fine which is reassuring. Now I've just got to wait for my csection and continue with extra monitoring but if my blood pressure goes up again or any other issues I'm to go back in straight away of course.

Dylan found it all very overwhelming.. When he came to visit he kept saying that he wanted to go to 'his hospital' obviously meaning the QMC and got upset and fed up very quickly. This meant that Mike couldn't stay very long unfortunately and had to take him home. He was upset whilst at home too, he kept asking for me and getting tearful but thankfully Mike was good at distracting him. It also meant more unplanned time off work for Mike which wasn't ideal now he had used up all his sick pay allowance and wasn't due paternity leave yet obviously. He also felt awful letting work down after only just going back!

I'm glad to be home so much! I know I've got to be in after my csection and I know that preeclampsia is very serious and needs to be monitored closely but it just seems silly keeping me in if they aren't planning on doing anything yet and if I now feel okay. The one good thing about my admittance though was that sitting in the family room eating breakfast I got to see lots of gorgeous newborn babies.. this finally helped me actually FINALLY feel some excitement and joy over our impending new arrival. This next few weeks hopefully will fly by and after Logan is born let's hope we can get back to some normality with limited hospital visits for a while (except for Dylan's chemo of course)...

Mummy Breakdown..

This last few days have been TOUGH..

Dylan has developed a bit of a cold and has been tired and run down at points which has made him super stroppy and grumpy. He has a tendency to hold his breath when he has a tantrum and these are becoming daily events, sometimes two or three times a day. I know lots of children go through this phase but it is particularly scary when Dylan does it as it makes me have flashbacks of the 10th of February and the 18th of March. Plus we know he has a reduced lung capacity so potentially cannot recuperate as quickly from these episodes. They really frighten and upset me every time he does it to the point the other night where I had a complete emotional breakdown afterwards.

His behaviour has been appalling over the weekend to be truthful and it's exhausting. Whether that be down to the steroids, him feeling tired and run down or him generally just pushing his boundaries with being allowed to get away with so much in hospital I don't know but it is gradually wearing me down now. He has been so so poorly and we nearly lost him so many times that it breaks my heart keep having to get cross with him and tell him off but it really is getting out of hand now. Then when he is in bed at night I feel like the worst mother in the world and worry if anything happens to him when all I've done is shout all day that I would never forgive myself..

The nights that Mike is working I've barely slept until he gets in at 4am.. I can't relax I just keep worrying about the 'what ifs' and 'how would I cope on my own' and I have actually gone to bed in my clothes just incase of such issues.

I have also cried, a lot... it's finally all just hit me after being strong for so long since he recovered from Easter and having put it all behind me the last few weeks, it's now all come flooding back and my anxiety is horrendous now Mike is back at work. I'm constantly checking him over and second guessing myself when I was so much more relaxed last week. I feel so stressed and upset all the time, and a little bit like I'm just constantly waiting for something bad to happen..

My blood pressure is sky high on and off, whether that is stress or pre-eclampsia again I don't know but luckily I'm on the home stretch now. I've finally started attempting to get some thing ready for Logan's arrival and am trying to actually use his name more instead of just saying 'baby' to see if that helps it sink in.. it just doesn't feel real that we are about to have another baby! This pregnancy had pretty much been ignored whilst dealing with Dylan and whilst it was very much planned and wanted from the start, I can't pretend that had we known how poorly Dylan was we would still be doing this and it certainly puts a dampener on feelings of joy.

I went for a clinic appointment today to supposedly get my c-section date.. I had both my midwife and our Macmillan nurse phone ahead on my behalf and explain the situation yet I get there and the consultant knew nothing about it. They are fully booked the week I need booking in for so I have no date still I have got to await a phone call which means I cannot organise any care for Dylan! They also won't give me a set time despite being told to do so, that means realistically I will be there on my own for the whole thing whilst Mike sits with Dylan at home until I am moved onto the ward. The thought of having a c-section on my own completely terrifies me. Then to add to it all the consultant asked me (because of this being our third child) if I would like sterilising at the same time!! Now.. previous to all this with Dylan I would have said yes probably but given the circumstances and how we have nearly lost Dylan repeatedly I do not feel this was an appropriate question and I left in tears.

I feel constantly like I'm waiting.. for something to go wrong, for another lung collapse, for him to get sick, for something to be wrong with this pregnancy, for my c-section which truthfully terrifies me.. All the things going through my head right now are making it hard to relax and focus on the good times and the happiness of having Dylan home. Every day really is a blessing and I feel that's all being overshadowed by this overwhelming anxiety and stress and I wish I could switch it off..

Milestones

We have had a lovely week being back at home with Dylan so far. We went to a wedding at the weekend which was a nice break and the boys didn't stop dancing together which was adorable!! There was a photo booth too which was lots of fun!

Yesterday he went to the QMC for two types of chemotherapy and he is having three more days worth of one of the drugs this week given at home before a two week break. This is likely his protocol now until September at least when it will be reviewed. The doctors are happy with how he is doing which is good.

Make A Wish also came out to see Dylan last night and in typical Dylan fashion he was very uncooperative! When asked what he would like his response was.. "I'm busy" and when they asked about one of his drawings (of a computer tablet) in his booklet he said it was a "rectangle" in such a manner! Obviously he was right as it was the shape of a rectangle but they wanted to know what it was supposed to be, not what shape!! They left a bit clueless as to what he really wanted for his wish so we wrote down a few different options based on his likes and dislikes, and have to now wait for a decision back.

Today we attended our second week back at Little Nippers playgroup which Dylan really enjoyed. It isn't on next week because of half term but we hope he can continue attending afterwards until they break up for the summer and he starts nursery in September.

As of 4pm today we have now reached five whole weeks with no chest drains which is fantastic progress, and this is now officially his longest stay at home without readmission since Christmas Day!

Every day we are starting to relax a bit more but still find ourselves checking him over when he gets a bit breathless from playing or gets upset in case it's a sign of a lung collapse. We are also checking his temperature regularly to make sure he doesn't get any infections. Each day is a challenge in it's own way, particularly emotionally as we try to regain "normality" without forgetting how serious his illness is and how little could tip him back over the edge again. We cling to the hope that he is getting stronger by the day but until he eventually has another CT scan (which bring their own risks so won't be done any time soon) we have no real way of knowing how his lungs are reacting to the chemotherapy..

The boys are loving being back together though and Dylan has come on so well with his walking and strength since being back at home. He still has his odds wobbles and gets upset and asks to go back to the hospital but hopefully that will pass. He is still holding his breath when he has a tantrum too but his lung capacity does seem to have increased now so he copes with this a lot better than previously. His wheelchair is finally getting delivered tomorrow which ironically he barely needs now but it will come in handy for long trips out and rushed school runs in the morning.

He had his hair cut this afternoon with Bryce and Daddy.. it was time to try and blend in where it is thinning out in places and fix the hack job Mummy did of the back and fringe in the hospital. He looks very grown up and it hides the slightly thinner patches very well. Hopefully now his chemotherapy has changed onto 'maintenance' rather than intensive that will be it for the hair loss, but in the grand scheme of things it really doesn't matter about a bit of hair!

I love having him at home, I'm just a nervous wreck!!

A Message To The Lady In The Lift...

A lady in the lift at M&S today with her husband was smiling and talking to Dylan as we rode up and down stopping at each floor because it was busy.. then just as we reached our floor she asked us about Dylan's oxygen and it caught me totally off guard!..

I apologise if I shocked you when I said "lung cancer" it was just the simplest way to describe it. I realise that sounded scary and you were visibly surprised at his age that he had something so rare. 

I didn't mind you asking, in fact after all the people staring at us as we had walked around the homeware section, it was actually refreshing to have somebody ask with genuine concern rather than just being nosy and rude.

You asked if he would be okay with such concern it broke my heart a little and all I could muster up was that "we hope so now yes" but I walked away feeling like I could have said so much more..

Truthfully I wish more people were like you, that they'd look at Dylan and see past the oxygen tubing and talk to him and make him smile.. that they'd ask questions rather than stare and speculate and that they would show genuine concern rather than just wondering 'how' or 'why' he had this disease, because truthfully we have no idea why ourselves!

Thank you for being the only person in that store today that actually looked at our son like the beautiful boy he is and not just defined by his oxygen and his disease, you restored my faith in the world a little today just when it was wavering and I needed that..

Discharge Planning Meeting

We have kept fairly quiet as to what has been happened the last week and a half because we knew that there could be set backs and changes made..

The different departments have been contemplating discharging Dylan for a while now we have had a relatively stable period. They think it would be better for his rehabilitation and recovery to be at home and just returning for his chemotherapy treatments or if there is more lung issues.

This made us very nervous at first as the last thing I want is a repeat of the 10th of February but then we also want Dylan home.. I am sick of living at the QMC and my children being apart.

We had a discharge planning meeting for Dylan on Friday, this included all the departments here at the hospital as well as the different community care teams that will take over Dylan's care whilst he is at home. He will have to go back to the QMC for his chemo weekly and if his blood counts fall too low or he gets an infection but otherwise he is now safe to come home..

So the plan was Saturday and Sunday to take him out first thing in the morning and not go back until bedtime, then today to take him home!! All we've got to do is phone them Tuesday morning to let them know he is fine and it went smoothly then we are just back as an outpatient!

I'm not naive enough to think that this is the end of it.. there may still be more chest drains needed but hopefully we are through the worst of it and are kicking this disease in the a**! 

We are still waiting on a confirmed long term chemo plan but we should get that at clinic on Friday fingers crossed..

I am SO proud of my gorgeous boy!

Three Weeks / Three Months

Today marked three whole weeks without a chest drain so far! Still counting..

Yesterday was exactly three months since his respiratory arrest at Little Nippers playgroup. We took him home for a few hours yesterday afternoon, this is the first time that he has been at home since that morning and it made us very emotional. Not only that but he took his first proper unaided steps across the lounge then continued to do so the rest of the afternoon and again this morning at Physio.

It's crazy to think that he is even allowed out of the hospital let alone on visits home after Easter weekend. We genuinely did not think we would be leaving the QMC hospital with him at all. We were put in touch with another family a few weeks back whose one year old little boy also had just been given the same diagnosis as Dylan with similar lungs (not quite as severe though) which is almost unheard of so they were keen to discuss it with us. Unfortunately this little boy did not make it, he contracted a similar bout of infections and passed away on Friday after going into cardiac arrest a few times so we are aware of just how lucky we really are..

We know Dylan's condition is very serious and unfortunately not every child with his diagnosis will make it. The cases we know of are few and far between and it seems to be very hit and miss as to who can fight not only this awful disease but the infections contracted from the weakened immune system that Chemotherapy causes.

There is a meeting taking place this Friday about Dylan's future care plan.. this meeting will include all the departments from the hospital that are caring for Dylan, the community teams and even somebody from Shelton Infant School will be attending to make sure they can cater for him come September which I think is just amazing that they are willing to do that for him. I spoke to the receptionist yesterday when I collected Bryce and they are very keen to have him attend and will do their utmost to meet his needs so that made me a bit tearful truthfully.

Small steps forward, fingers crossed!

Oxygen & The Park

Yesterday we got the news that Dylan's home oxygen was being delivered Saturday between 9am and 1pm so we started informing the relevant people ie. home insurance, car insurance and the fire department. It was all very scary and exciting at the same time!

We had what is now known as 'Basic Life Support' training (CPR) and were provided with a face mask to use in case Dylan needed rescue breaths. We were taught a little more in depth than just the basics due to Dylan's condition so hopefully what we now know could technically keep him alive until an ambulance arrived in the case of respiratory or cardiac arrest. Both of us had basic CPR training from previous work places and we knew the most part but some things had definitely changed including the chest compression part. I like to hope I could do this in an emergency and not panic but it is definitely a scary concept.

They officially stopped his Sildenafil medication as his Echo showed no pulmonary pressure so he no longer needs it which is good news, we noticed his heart rate was a lot lower once it was out of his system which was good.

He had a good physio session in the morning on the soft play equipment again and we went to feed the ducks in the afternoon just outside which was nice as I was gutted I missed out on that the day before!

Our home oxygen supply was delivered today by lunchtime. This consists of 4 large cylinders that last 80hrs each, 4 small portable cylinders that last 16hrs each and a rucksack. We have lots of tubing and information regarding safe use and reordering so it is all very overwhelming!

So.. once we had the all clear we went out this afternoon for a trial run to Wollaton Park just for 2 hours. This was the first time Dylan had been off the hospital grounds in nearly 3 months and it was a bit overwhelming and exciting for him and us too!

It was fun but tough! Dylan was desperate to play on the park but struggled to do much so it required a lot of help and patience plus carrying around a 3kg oxygen cylinder with only 2m of tubing was a challenge to get use to..

He soon got tired and fed up so we got him the Ice Cream we had promised him and had some relaxing time on the grass before jumping back into the buggy for a walk around the grounds.

It was exhausting for me never mind poor Dylan but we must keep going and push to do 'normal' things to help him recover. I did find people were staring a bit at points which made me feel uneasy. I imagine we did look a sight today though struggling and trying to work out the logistics whilst I was waddling along looking like a whale!! Plus the buggy is only small so is not easy to push with Dylan and the oxygen now he is getting bigger. I cannot wait for his wheelchair to be ready and to get the seat attachment for the pram.

He enjoyed getting out for a short bit though and fell asleep in the car on the way back to the hospital bless him! As soon as we got back he did ask to go again tomorrow so that's a good sign I suppose!!