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