All It Takes..

Some times all it takes to set my mind racing is something small. This evening is one of those times!

Dylan has been fine all day apart from sulking over a broken scooter and throwing a tantrum on the way home that left him a little breathless as normal.

He has this little habit of holding under his armpits near his chest and when we ask him why his typical response is “nothing”. Occasionally (and I mean very occasionally) he will say his chest hurts but usually that is when pointing to his stomach because he needs a bowel movement, or his side because he has a stitch from running / walking too fast..

Tonight he started doing his holding under his armpits thing and saying “nothing” was wrong when I asked. I don’t know whether it’s just habitual, like a few other quirks he has, or whether it’s something to be concerned about. I will bring it up at his next clinic but there was a theory it could be his scars itching or feeling odd rather than his actual chest as that is where they are all located. Still it makes me worry.. is it a cyst bursting or a new nodule or cyst growing?!

He has eaten and drank really well tonight which he never would when he had a cyst pop so that’s reassuring in that way. And he has been playing fine, singing and shouting and not getting tired at all.

Come bedtime he was fine. Numbers were all good even though that has become a challenge in itself now. His PTSD prevents me from getting a fully accurate reading when he is awake as he gets very stressed about me checking him. Even though we use to do it multiple times a day as routine, gradually we’ve had to stop and are now just down to once a day (unless we are concerned), which is just before bedtime when he is lay down and hopefully relaxed. Then we can also see how the day has effected him and whether he is tired. He really overthinks his breathing and gets tearful and fidgety if we can’t get a good reading quickly. I’ve tried various calming methods but I think after everything he has been through it’s normal really. Because of this I always check on him a bit later in his sleep. 

Sleep studies are how doctors get a good idea of a persons oxygen levels and heart rate during rest but also because during sleep the body isn’t able to ‘compensate’ the way it does in the daytime or be influenced by outside stimuli and you actually get a more accurate picture of how a person is coping. This is why we check him again, we can see how he is without him stressing out, breathing funny on purpose, fidgeting or talking away to himself as he likes to do! 

Tonight I couldn’t get an accurate heart rate reading as he was too unsettled. His oxygen levels read at 98 so then I counted his HR out manually twice and it sat between 70-85 which is normal for Dylan now.

However, he felt a little sweaty but not feverish. This coupled with him being unsettled could be because his room is warm. He usually gets a bit like this after a bath if it was too warm but he didn’t have one this evening. Back when all this first started he use to suffer horrendous night sweats and the nurses always thought he had a fever because his bed and pjs would end up soaked. We were told this was down to his oxygen needs. As his lungs improved and when he started on overnight oxygen the problem went away. He has been fine ever since coming off the oxygen too so it does worry me that it is a sign of the disease reactivating.

I will keep checking on him and hopefully as his room cools down he will be fine. Or he is just sweating off the cold he has. There really isn’t enough “symptoms” for me to be concerned, I know that in my head but it doesn’t stop good old anxiety and PTSD coming out to play!! I was having a conversation the other night and explaining how Dylan will never be classed as being in remission. His cancer is never “gone” it’s just inactive. This I think shocks a lot of people as it’s a hard concept to understand but it goes someway to explaining how we feel daily even though life is going great right now. We are literally waiting to see what flips the switch in his body to turn this evil disease back ‘ON’ again... 

This is our life now. But at least it is a life.

Triggered

So after writing my post last night I had a full on meltdown. Something happened New Year’s Day that isn’t my story to tell but it landed us back in a hospital visiting family members after a very serious incident that could have been fatal. Whilst we were waiting Dylan kept looking uneasy and tearful and kept telling me “I love you” over and over.  I put it down to tiredness as it had been a long stressful day after a late night prior for New Year’s Eve. That night I couldn’t sleep and kept flashing back to the moment we started to say goodbye to Dylan and turn his medications off. I had been a lot better recently so it almost felt raw again.

Fast forward to last night and I was still feeling uneasy and picturing those moments we nearly lost him in my mind. Feeling tearful myself and struggling to fight back the emotions, I was then tipped over the edge by Dylan waking up crying. He obviously got up to the toilet and got disoriented which he can do sometimes but then he kept saying “I love you” over and over to me again when I tried to figure out why he was crying. After taking him to he toilet and putting him back to bed once he had calmed down, it just hit me like a wave and I couldn’t hold back the tears any longer. Luckily he was fine for the rest of the night but I didn’t sleep well.

One of our family members that was involved in the incident is still not doing very well so it’s a very worrying time for us right now. The other is now recovering at home thankfully but they could have both been killed and it really is another stark reminder that life is precious.

2017

As I sit here staring at the Christmas lights flickering and thinking about the boys going back to school tomorrow I am inspired to write again even if it is only brief..

I don’t want Christmas to be over, I don’t want the eldest two back at school, I don’t want to take the decorations down. I love the magic of Christmas. The way it makes everything seem so much more cosy and calm. I don’t know whether it’s because I am a December child myself or whether it’s just me trying to escape reality. I had a hard time at the start of December this year. After two ruined Christmases (well actually four but the two previous weren’t because of Dylan’s illness) I was feeling jaded and depressed. I’ve probably overcompensated this year and spent too much money, put up too much tinsel and eaten too much food, but eventually I got into the spirit and now I don’t want it to end.

January is always a dreary miserable month as is much of February. Putting aside that it is Mike’s birthday soon it feels like it’s a long slog of cold wet weather whilst we all wait for Spring. It also reminds me now of the month we were told Dylan was likely terminal two years ago and brings back worries of him coping in the cold and with all the germs January brings. Luckily at least Dylan is nearing six months post treatment so he will be safe to catch chicken pox by the time that season rolls around!

To be truthful we’ve been VERY lucky in 2017 and have had a wonderful year. We’ve been on lots of days out and mini breaks. We had an amazing holiday at Disneyland Paris that is the best holiday I personally have ever had so far. Dylan barely got sick. He finished chemo and rang the bell and he got his line removed. For a boy that was considered to be terminal the year before he really showed us all he was determined to live life! The eldest has grown LOADS and started juniors and football this year. I can see him changing into a young man already and he makes me so proud. And the littlest is such a character, he is cheeky and has such a sense of humour for one so small it’s like he has been on this earth before.

Not everybody has had a good year. Family members have had tough times including just yesterday on the first day of a new year! Friends and acquaintances have lost loved ones. Lots of children we know of have lost their battles with deadly diseases. In lots of ways 2017 was pretty awful so in our little ‘bubble’ of five we feel very blessed. It makes me worry that because we’ve had such a good year.. that now something bad will happen and crash all our hopes and dreams for the future. 

I hope that 2018 is kind to everybody. Bad things will always happen that is part of life sadly. But I pray for no unexpected surprises and health and happiness for my loved ones and their loved ones. It’s a sad truth when you’ve come to accept that in life people get sick and sometimes it’s your own children or parents or spouses. A lot of people never contemplate their own mortality until it happens to their family, but it certainly encourages you to live life to the fullest and to cherish every moment. And that is my only resolution for this year again.. to continue to make memories and cherish every single day with a grateful heart.. <3

November Blues

I haven't been writing as much recently, or working, or sleeping to be honest. Nothing is 'wrong' per se but I have become a little distant from the world as late and I am trying to snap myself back to reality.

It’s now November and we are getting closer to Christmas.. this is a tough time for our family for various reasons but this year I can feel my PTSD creeping in and second guessing everything. Without the ‘safety net’ of Chemotherapy I’m questioning whether every cough, sniffle, tummy ache, or complaint is a relapse. Looking back on photos and videos from this time in 2015 to see if I could see any change in him, any signs to show something was wrong.. I can’t, I honestly can’t see anything obvious and that scares me. We had NO CLUE anything was wrong with Dylan until his lungs were 80% cysts and his right lung collapsed on Christmas Day. He doesn’t have that much healthy lung to get into that mess again, I need to be able to know if it is coming back before it is too late this time!

When treatment ended I think a lot of people expect things to go back to normal for us but that really is not the case. Even though scan was stable this time and his line can hopefully come out soon (still ruddy waiting on that), our lives will never be normal. We will forever live each day anxious of the disease coming back. Every illnesses or bump on the head could be the one to trigger those naughty rogue cells to cause destruction again. When he finally catches up on his preschool boosters next year, even they could set them off on a rampage in reaction to the vaccines which petrifies me, but of course not vaccinating him is just as risky. Plus at some point after January we need to let him catch Chicken Pox so he can build up an immunity whilst he is still a child (and not on Chemo of course in case he needs it again ever).

It’s not ‘normal’ to feel this way. It’s not ‘normal’ to worry about your child dying every single day the way I do. It catches me in waves, simple things set me off and I’m right back in that moment of saying goodbye to him and it’s still such a very real worry for me that it could happen again. I see so many families on social media (some of which we know from our ward at the hospital) whose children are heading down that path at the moment or have sadly passed away and it effects me in a way now it never did before. Prior to Dylan getting poorly I never dreamed I’d outlive my children, it’s not a notion that ever really crosses your mind, it is terrifying and consumes your life and you simply CANNOT shut it up no matter how much you want to..

I often feel like switching off and shutting out the world as on particularly bad days everything seems to trigger me but it really doesn’t help I’ve learnt. I’ve been trying really hard recently to work on my issues, to get out the house more, to make new friends, to connect with the few old ones that stuck around but I just feel so ‘different’ from everybody else now. I put on a smile and my big girl panties and head out into the world and for the most part you’d never know I’m battling these demons in my head. I don’t like to talk about it all either to be truthful, I’d love to have a conversation not about Dylan for a change actually so I will often change the subject. But yes of course deep down I’m still that ‘Cancer mum’ and always will be even if he is NAD for now..

The Good Doctor

There has been uproar in the Histio community today over an episode of The Good Doctor that aired last night. An earlier promo had shown that Langerhans Cell Histiocytosis was going to be featured so there was excitement at first over the potential awareness this would bring. However the episode itself was flawed and did not accurately portray LCH leaving a lot of angry patients and parents.

*Disclaimer.. I haven’t actually watched the episode myself and after what I have read I don’t intend to. My comments are based on what friends have said happened and the synopsis.

The diagnosis was given as an alternative to the original diagnosis of Osteosarcoma and was described as not being a Cancer like first thought. We all know this is incorrect and LCH is a rare Cancer and after years trying to get it classified correctly we are sick of having to fight those ‘at least it’s not Cancer comments’.  It is CANCER and AUTOIMMUNE so it is the ‘honey badger’ of diseases and does whatever the hell it likes. It is not limited to blood, bones or skin, it can damage what it wants essentially...

It was also described as being easily treatable with prednisone which is a steroid pill. This is also incorrect as LCH requires Chemotherapy and is often not easily treatable with patients requiring multiple types over many years or even gene therapies for persistent recurring cases. Sufferers may need organ transplants because these rogue cells DESTROY the body and it isn’t always reversible. Sadly you can also can die from this disease whether or not people want to hear that.

But why such upset over a TV show? Lots of medical shows are inaccurate after all..

For those of us wanting awareness, it brings the wrong type of awareness. It marginalises our struggles and makes patients, and those caring for people with this disease, look like ‘hypochondriacs’ or liars. It creates a ‘my disease is worse than your disease’ mentality and downplays the downright hell our children (and adults sometimes) have to go through.

There would be uproar if Leukaemia was referred to as the ‘easy’ Cancer on a TV show because everybody knows what it is and that it can kill. But because nobody has heard of this disease, our concerns are met with comments such as ‘calm down’ and ‘it’s not that serious get over it’.

And as a parent of a child that nearly died REPEATEDLY because this CANCER destroyed his lungs I can tell you it damn well is serious!

#RANTOVER

I Can't Wait To Watch You Grow

Most people don't want their children to grow up. They do grow so fast it's true, and in the blink of an eye they go from tiny babies to school age, and then before you know it they'll be teenagers! It's a sentiment I do share believe me.. but I also can't wait to watch mine grow!

When you've faced the fear of loosing your child it really does throw a whole new light on everything. I am so lucky I get to watch my children grow into adults and that is amazing and something not to take for granted. Yes it is wonderful when they are little and you should cherish every second of it. But don't feel too sad when they go up a clothes size, start a new year at school, have another birthday.. because growing up is something not everybody has the chance to experience.

I thought that Dylan would be 'forever two' when we nearly lost him just weeks before his third birthday. Now instead of wishing he would stay little like I use to, I am just so excited to watch him grow and get stronger! I cant wait to hopefully watch him go through all the stages of school, find love, find a career, get married, maybe have children of his own etc. because he was nearly robbed of all those things.

Childhood diseases such as Cancer claim so many lives a year, and it's easy to live oblivious to this if you've never seen it happen close to you. So many children won't have had a 'first day at school' this last week. So many won't next year either. Lots never get to ring that 'end of treatment' bell. Some wont reach adulthood. Many more may not get married or have their own children. These things are not a 'right' in life and are not guaranteed, they are a privilege in my eyes. Such milestones should be celebrated with joy not sadness.

We had an appointment this last week for Dylan at Great Ormond Street hospital that has been weighing on my mind since he finished treatment. Despite the disease being 'non active' I have always worried about the damage left behind and what it meant for his future. I have a huge fear of outliving my children and I was so frightened that once treatment had finished we would be told Dylan still needed a lung transplant because of the extensive damage. My fears however were quashed by Dr. Helen Spencer who quite simply said "I'm not going to transplant him he's far too healthy"! Yes the scans don't look spectacular but Dylan has proved at his appointment that he can manage with what he has, and very well indeed!! They are so pleased with him that they don't even want to see him next year unless there are any issues. If he continues to improve and the disease doesn't reoccur there is a strong chance he will be discharged from GOSH in two years and won't need a transplant. I walked out of that appointment feeling like the weight of the world had been lifted off my shoulders! Now just to pray the LCH doesn't ever come back of course.

My beautiful boys.. you are growing up SO fast and I cannot wait to watch you grow into the wonderful young men I know you will all be someday. You make me feel like the luckiest mum in the whole wide world, and I can't wait for you to show me what you will achieve each step in your journey through life. <3

New Worries

Despite the fact Dylan has now finished treatment, things feel uneasy in our house. It feels a little like one door has closed but another one has opened and we are now looking more at the long term side effects and complications the disease has caused..

The recent CT scan showed very little improvement which was disheartening. In truth the reason we have previously seen such drastic improvement on scans is because the cysts were bursting. We can clearly see where large cysts once were by the scarring left behind. The cysts that are remaining are obviously not high risk of popping which is good in the sense that it takes away the risk of lung collapses, but it does mean they won't just 'go away'.

There is little known about Pulmonary LCH in children so there is nothing to really base a prognosis for Dylan on. In the few studies out there, some surviving patients have cysts remaining all their life, others they gradually resolve over the course of 20 or so years but it obviously would differ based on severity. For this reason he will be reviewed regularly of course but it worries us daily. He also has scar tissue where cysts once were which will have implications on how well his lungs work. He may continue to live a happy and normal life or these issues may impact on his breathing more as he grows and he may require a transplant still to buy him some extra time or improve his quality of life. People ask us his life expectancy and to be truthful we do not know and it is not a question we like to answer as it is still likely we may outlive our child, and that is a something no parent wants to ever face.

It may come back... relapse rates in LCH are unclear. There are lots of statistics out there but Dylan doesn't really fit into any of those as he has what is considered 'adult type' PLCH but to give an idea, the relapse rate for high risk organ LCH is approximately 54% with most relapses occurring within the first 12-15 months. Infact some people relapse within weeks of treatment finishing. Also unlike some other types of childhood Cancer.. LCH isn't limited to one system, just because Dylan had it damage his lungs doesn't mean it would happen again. It could quite literally come back anywhere and without doing regular full body MRI scans which are not practical there is no way of knowing until symptoms show. So every ache and pain could be a sign of it coming back in a bone, any rash could be it effecting his skin, any sickness or bug could be it effecting his GI tract, liver etc. LCH is a tricky little buggar.. described by a fellow 'Histio mom' as the honey badger of diseases as it does whatever the hell it likes and now our 'safety blanket' of Chemo has been taken away!

At one point before diagnosis was made, I was told Dylan likely only had 'months' rather than years left, so any improvement on that is a win for us and we will take every second we have with him as a blessing. It is impossible not to worry about the future, but you cannot let it impact on living life in the now.

But then sometimes even living in the moment brings worries to face daily and bridges to cross in the journey... For example, Dylan hasn't gained weight in the last six weeks which has me a little concerned. He has been constantly unwell lately, and fighting off illness can burn more calories so I am going to keep a close eye on him the next few weeks now his body should be recovering from Chemo and be able to fight off viruses easier. I am hopefully this is just a minor blip and not a signal of any underlying problems.

People will be expecting us to slowly go back to 'normal' I suppose now, but I don't think our life will ever be normal again. Every single day for us will be lived in the fear it is our last.. for we never know what is around the corner for any of us...