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...

Surprise!

Back in February at Dylan's 12 month review we were told 'six more months' of chemo. I then worked out that 18 months is 78 weeks and counted on from that appointment. But I made a mistake...

Monday I made my usual three weekly call to the QMC to book Dylan in for his Chemotherapy appointment on the Tuesday. I had on my calendar that this was week 77 out of the 78 and would be his last week of actual Chemo as week 78 would be one of the weeks off. We were looking forward to marking these milestones together.

However it turns out I was wrong with my maths. I didn't count the first week he started treatment as week 'one' I just counted on from there. I also didn't count in the extra week he had before his 12 month review. So I was informed on the phone that LAST WEEK was actually week 78 so he was already finished Chemo. Dylan's consultant had even said 'no more Chemotherapy' in the diary.

This took me by complete surprise and I cried a lot once I got off the phone. I had been expecting Chemo this week, as had Dylan, so to be suddenly be told he had finished was a whole wave of emotions. I also felt a little robbed of the chance to celebrate his last dosage, it had been and gone without me realising it!

Obviously all this was pending Wednesday's pre booked CT scan to check the LCH is still 'Non Active' and we had a clinic appointment afterwards to confirm 'end of treatment' and go through details of what happens next.

But then on Tuesday we had some other sad news. My parents' dog had suddenly gotten very poorly over the weekend and it was discovered Tuesday morning that he had Cancer and was bleeding internally. Devastatingly it was already too late to help him, any attempts to remove the Cancer would have been in vain and he would likely have suffered so my parents' had to say goodbye to their beautiful German Shepherd.

This affected us all and tinged our mood with sadness. How could we possibly celebrate the very next day if we got some good news? What if we got more bad news? Emotions were running high and I was feeling angry, so angry with Cancer and the fact it seems to keep picking on us. Those that know me personally know that we've had a lot of Cancer in our family prior to Dylan. Some people go through life never facing hardship or illness and others seem to hit it every way they turn. I see so many families loosing to these diseases that celebrating feels almost bittersweet.

But then Dylan ringing that bell would be a huge 'F*CK YOU' to the disease that tried its hardest to kill him and would for us be in memory of those no longer with us.. 

So here we are.. Dylan's scan results were a bit anti-climactic this time with very little change but they are stable and there is no signs the disease is still active which is the main thing. We are not sure what will happen with regards to the remaining cysts or damage and scar tissue. We should have a review with the transplant team at GOSH and our respiratory doctors to talk about those issues over the next few months.

We have no idea exactly when the LCH activated but after an almost 2 year journey (from first symptoms) that has included; 18 Months of Chemotherapy, 26 Chest Drains for Pneumothoraces, a 5 Month stay in Hospital (with 23 days of that spent on Life Support), and 5 very VERY close calls.. TODAY our amazing superhero Dylan finally got to ring that pivotal End of Treatment Bell at Nottingham Children's Hospital signalling no more Chemotherapy!

He will still keep his Hickman line in situ for blood tests and until his repeat scans are done to check there is no relapse now that Chemotherapy has stopped, that should be reviewed at some point in November.

We are of course hopeful that the LCH doesn't EVER come back and that he can get his 'wigglies' out before Christmas, then hopefully we can start to think about putting the last 2 years behind us and focus on the future! <3

What Causes LCH?

LCH is caused by mutations in a cell signaling pathway known as the MAPKinase pathway. Key genes mutated in this pathway include BRAF (65-70%), MAP2K (20%), and other rarer genes, all of which lead to abnormal activation of a gene known as ERK. These mutations are “genetic accidents” which occur during DNA copying in dendritic cells and are not inherited. The maturation stage of the dendritic cell will determine what type of disease a patient will develop. If the mutation occurs when the dendritic cell is still in stem cell stage, this early precursor may go to any organ in the body-especially liver, spleen and bone marrow. Mutation in a more mature dendritic cell will lead to LCH in a variety of organs, but not the “high risk” ones mentioned before. An even more mature dendritic cell carrying this mutation may go to only skin and bone.

BRAF is the most common mutation in a cell. The mutation actually causes the cells to keep producing even though there is nothing telling it to turn on. There are receptors that usually tell the cells to multiply and when there's a mutation like the BRAF mutation it (the switch) is stuck on the "on" position. That's why the lesions develop.

They don't know why they develop in the places they do and they don't know why some form lesions and others eat away at things like bones or even white matter in the cerebellum. There is another theory that the faulty genes can cause the cells to multiply in an immune response, such as to infection. They rush in to try and protect the area but instead these immature defective cells cause more harm and damage that particular system. So with Dylan, for example, it is suspected that a chest infection and swollen lymph node he had early 2015 triggered his immune system to respond and sent these defective cells to his respiratory tract and lungs.

The same theory goes for adults that smoke. If they have one of the faulty genes then in theory the body sends these langerhans cells in to protect the lungs from the chemicals etc in cigarettes but of course they do more damage. Doctors do not think smoking itself actually causes LCH, it is the immune system's response that can cause it.

So in theory anything can trigger these rogue cells. There is no 'remission' for LCH only 'active' or 'non active' disease and it can reactivate at any point. Doctors are still trying to combat 'relapse' or reactivation rates by increasing the length patients receive Chemotherapy or by trialling new inhibitor drugs for those with particular gene mutations that haven't responded to Chemotherapy.

So when the question is asked.. is LCH cancer? The answer is vague. It is now classed as Cancer officially even if it it not fully recognised as one. It is an autoimmune disease at its baseline, that acts cancerous. So both, in the words of Gregory House (House M.D. episode 'Merry Little Christmas')..

"Also known as 'you got your Cancer in my Autoimmune' disease.."

Feeling Isolated

I'm starting to really see the effects Dylan's illness has had on Bryce as we approach the end of term activities. I'm lucky that he is a very outgoing boy and will often just invite himself into the group to play without a second thought, but as an outsider I can see the awkwardness of the situation. They all have their little cliques and friendship groups and I feel we are slightly isolated from those.

When everything first happened with Dylan it put a stop to plans we had for Bryce as well. He wasn't able to attend birthday parties as we were stuck in ICU with Dylan, so the invites soon stopped. He couldn't attend the out of school clubs because we couldn't afford it at the time due to the costs of hospital travel etc, plus we were already relying on other people to drop him off and collect him from school, we couldn't really ask they give up their evenings and weekends as well to ferry him to football or Beavers for example.

Once things settled down and Dylan came home I signed Bryce up for Beavers and every school subsidised club going but he struggled to mingle with the other children as they had already moved on and formed their new friendship groups whilst our lives had screeched to a halt. The one thing we didn't sign him up for was football because I was very aware how 'behind' all his peers he would be unlike with Beavers where they all do the same activity each week. 

And that was probably my biggest mistake.. he hates that he doesn't go to football with his friends but it's just not feasible either with Mike's shifts. All his 'friends' attend clubs he doesn't or have been spending time together outside school when he was stuck at Nanna's house for months on end. They seem to all have formed a strong bond as have the parents, people I thought I got on well with and vice versa barely speak to me these days..

When Dylan was first poorly I really struggled with the school run (I still do on bad days) and didn't want to talk to anybody at first so I kept my head down and stayed in the corner, but I can see how this hasn't helped because I just don't have a relationship with the parents of Bryce's friends. I stay in my comfort zone and only talk to the two or three people that I know which isn't helping Bryce. Whilst their children ARE friends with him, they aren't the friends he would play with at say lunchtime, because they are all girls and have their own games and groups of friends of course.

I do the same with Dylan though. I don't really talk to anybody at nursery because I hate talking about Dylan's illness and that is all people want to talk about!!! And with Logan.. I've actually stopped taking Logan to playgroup the last two months because I'm sick of being introduced to people as ''Dylan the boy who collapsed and nearly died's mum." Ugh!!

I am starting to feel very isolated. I've kept people at arms length because of how I've been feeling, and in turn people have done the same to me because nobody knows what to say to that depressed 'Cancer mum'. Everybody has gone about their lives meeting up, doing playdates, football, days out, nights out etc. while I've been stuck staring at four walls of either a hospital ward or this house.

I only hope that moving to Junior school may provide some fresh faces and a fresh start for Bryce. And I need to try and pull myself out of this depression and try for my children's sake to make friends. Feeling pretty terrible as a parent this week that's for sure..

Chicken Pox & Chemotherapy Patients

Why is the chicken pox virus so dangerous to chemotherapy patients?

It is quite simple really.. patients undergoing chemotherapy have a weakened immune system therefore cannot fight off the virus and it can cause serious complications such as pneumonia and blood poisoning such as toxic shock and sepsis, which can be deadly because these complications use up neutrophils quicker than the body can produce them.

Chemotherapy slows the production of blood cells, killing them off as they grow and divide. The white blood count typically goes down first because these have the shortest life span of the blood cells. Part of our white blood cells are made up of neutrophils which are used to fight off infections. If these drop below 1 then a person is less likely to be able to fight off an infection. If they drop below 0.5 a person is at serious risk of become extremely unwell from a minor illness such as a cough or cold. A persons counts are usually lowest 7-10 days after chemotherapy and they can take 2 weeks to recover by which point another dosage of chemotherapy is due for some patients such as Dylan for example.

In a person with damaged lungs or lung disease such as Dylan again, any illness that carries the risk of progressing to pneumonia can be devastating. Dylan nearly died last year from pneumonia because he quite simply does not have enough healthy lung tissue to cope with infection. You'd be surprised how many people out there have lung problems.

It is extremely frustrating to explain why chicken pox is so dangerous over and over. This doesn't just apply to chemotherapy patients either. If you go out into the world with active chicken pox or shingles you are risking EVERYBODY with any underlying health problems, this includes pregnant women, premature babies, newborn babies, elderly, those with lung problems, heart problems and other chronic conditions to name a few.

Please think before you go out into the world when unwell even if you feel fine. What may be minor to one person can be deadly to another. You never know if somebody has an underlying condition, are in the early stages of pregnancy, whether they care for an elderly relative or whether them or a sibling of theirs is receiving chemotherapy. It's not worth risking other people's lives. I do understand we all have busy lives with jobs to do and children to get to and from school but please ask for help in these situations. It may be a slight inconvenience to you, but imagine the inconvenience of having a child seriously unwell in hospital for months on end. Or having to split siblings up and have family take time off work because one has caught something that is too high risk to be near the other. PLEASE walk a mile in our shoes before you put your own on and head out that door in the morning. Thank you.

And on a side note, those saying we should keep him at home... REALLY?! Would YOU keep an active four year old at home all day everyday? He already missed out on five months of his life confined to a hospital bed last year and we've had to fight hard to get him back to where he should be for his age. Plus HE fought hard against all odds to be here today and he deserves to live his life and enjoy it!! A few simple precautions is all it takes from others, and that is all we ask for.

Sweaty Problems

With the hot humid weather last week we encountered some issues with Dylan's Hickman Line dressing. Whilst we were away everything was fine but upon returning home, having to sleep in a room without air conditioning caused him to get very sweaty indeed!

The antibiotic 'Biopatch' disc expands when wet, from sweating for example, and then sits against the skin causing irritation. Tuesday morning last week the skin around and under the disc was pretty much red raw and causing him real discomfort. I quickly changed the dressing but by Wednesday morning it was still extremely sore and looked to be getting worse. I started having to change it twice daily and that was a LOT of Biopatch discs when we usually only get given 5/6 every three weeks so I desperately need to stock up for the summer months ahead.

Thankfully by Friday there was improvement and due to the cooler weather the dressing didn't swell up from sweat so it could be left on a little longer to allow the skin to heal. The problem being that no air can really circulate around it and every time we had to take the dressing off it pulled on it more and the antibiotic wipe would sting. Thankfully as of yesterday evening it seems to be almost fully healed now, but I haven't needed to change his dressing this evening so I will look at it properly underneath tomorrow.

I know not all patients with a Hickman Line use a Biopatch dressing constantly but we have been told we must do so to help prevent infection, I think partly down to how catastrophic what started out as a minor infection, was to Dylan last year. It was a bit of a catch 22 situation at one point though as the damp dressing and needing to keep replacing it were making the skin sore, but had we not used one the skin could then have become infected and spread to his line. We felt a bit stuck between a rock and a hard place for a few days.

Aside from that hiccup we are doing fairly well at the moment. It is chemo week again this week so we are hopeful the powdered Hydrocortisone will work properly again and we won't have a stress response or a temperature spike. I have wondered if the 'effectiveness' of it is wearing off the reason we spiked a temp last time. Is it possible for the body to get use to it? I may ask that question at the hospital tomorrow when we go to pick up his Chemo and meds for the week.

After a relaxing week at Disneyland and a fairly calm week (despite dressing issues) last week, I am now back to feeling more anxious this week. Mike is back on lates and I am alone with my thoughts and Facebook, which is filled with stories of children fighting Cancer and other illnesses. Seeing all the bad news and sad stories of children loosing their battles makes me feel so down, not only from worrying about Dylan's future, but also from feeling their pain and remembering how I felt last March-April. I cannot comprehend what they are going through on one hand but on another I can almost feel it in my heart and it aches for them in a way you can't understand if you've never faced your child's death head on as we have.

We were lucky that each time we were on that knife edge (four particular times spring to mind) he was pulled back from the brink with seconds to spare. But in my mind, and out loud, I had said goodbye to my child each time and imagined a future without him. Actually having to live that future (without any of them) is a different matter though and it is my biggest fear in this life. I wish nobody had to face that fear ever.. it is too cruel for words.

I worry about the future, I worry about the present, and I have flashbacks of the past. It is exhausting fighting a battle with your mind every day whilst trying to be supportive to your children. We have a busy few weeks then a bit of a lull with no major plans to keep us busy as school ends, so we will be on countdown until Dylan's next scan date (which we don't know ourselves yet so we can't tell you). I like to be busy, it keeps me from getting consumed by anxiety so any suggestions are always welcome! :)

Cultures Update

2 out of the 3 cultures that were taken are negative.. the other just still reads as processing but nothing has grown yet! Hoping to find out the final result tomorrow.. that is all for now folks!!

Goodnight <3

Update On Issues

At approx 12.30am Dylan's fever spiked to 37.8 which is only classed as low grade so not enough to go in to the hospital. He was asleep at the time. I left him ten - fifteen minutes then woke him up to give him an additional dose of Piriton to see if it was Cytarabine related and if that would help settle his temperature. When he was awake he had some juice and his temp was 36.8 but then it climbed back to 37.2 after he had gotten up to the bathroom, although a fever is only anything over 37.5.

I do recall him still having low grade spikes the very first cycle we used Hydrocortisone without the Piriton as well which is why I gave him an extra dose to see if it helped. His temp spiked back to 37.5 once he fell back asleep but I was unsure if the piriton had chance to kick in yet, as it can take up to an hour, so I left him until 2am then checked again. I got differing temps that time. Firstly I got 36.9/37.0 then he rolled over and I tried the side he had been lying on and got 37.7 but then that subsided to match the other side at 37.0, so truthfully I was absolutely stumped as to what to do. The cut off for going into the hospital is 38.0 now so we were mostly watching and waiting.

By now Mike was home and neither of us really knew what to do at all! I was exhausted and aching from sitting in the car so long earlier. All I wanted to do was sleep but I daren't relax. We actually have three thermometers that's how anxious we are in this house! We opted to try and sleep, me still fully clothed of course! I set an hourly alarm to check him at 3.20am when his temp was 37 again. At 4.25am he was 36.8 and I meant to set another alarm for 5.30am but I forgot to switch it on!

He woke up at 6.45am with no fever and in good spirits. I wasn't sending him to nursery, however, because I didn't want to tempt fate if he was likely to have a funny turn. The way things had been though was like textbook Cytarabine syndrome trying to break through the Hydrocortisone, especially with the timings of all his spikes etc.

By 11am I regretted not sending him to nursery because he was climbing the walls! The nurse came to do his chemo at 12.30 and we used the powdered Hydrocortisone like we use to do.. and NO bad reaction!! I am thrilled with this because he really did get so upset and it had started to impact on how he was reacting whenever something bothered him.

He has been perfectly fine all day today really running riot. He got tired by 6pm which isn't surprising considering his unsettled night last night again. He is finally in bed and hopefully sleeping, as he likes to play at bedtime lately. He had no fever when I put him to bed, if anything he was a little cold. This whole thing screams chemo to me rather than infection, I am praying that his cultures are clear. If we have a good night tonight I will phone the ward in the morning to see if there are any preliminary reports back yet. The official 48hr mark would be approx 3pm ish tomorrow but I should be able to get an idea in the morning hopefully whether anything has started to grow.

Praying for a better night all round, I need more than 2 hours of broken sleep myself to function properly this weekend!

Issues

We've had some issues today with Dylan that we are still not 100% on the reason why. This is bad timing for us at the moment as we have important plans this weekend, so of course in typical Dylan style that would be the time to cause problems!! Obviously though Dylan's health is the top priority as always.

He didn't seem himself today after nursery.. he looked tired and washed out. It is chemo week though so we didn't think much of it. He didn't sleep great last night and looked shattered. He seemed a touch warm but nothing to worry about. Until the nurse came to do his chemo..

We've been having issues recently with this anyway. Last cycle and the Friday of the cycle previous he has gone absolutely crazy when they've given his medicine and got himself into a right state over it. Well today he did the same so this pushed his temperature to 38.1 which according to new guidelines, means a trip to the QMC for blood cultures.

It took us half an hour to drive there and then an HOUR AND A HALF to find a parking space!! Luckily during all this Dylan was perfectly fine, he seemed to have cooled down and was happily chatting and playing eye spy with me!

We eventually got up to the ward and they took his blood cultures and a full blood count. His temperature was down to 37.1 so we just had to wait for his counts to come back which took over two hours sadly. During this time his temperature stayed away and he ate and drank and played like nothing was wrong.

His blood counts came back and again his neutrophils are back UP to 5.2 which considering this is chemo week is crazy. This could signal an infection especially alongside the temperature, despite the fact it went down, so I'm on tenterhooks tonight watching and waiting.

Obviously we have to wait for blood cultures to come back which won't be until Friday but there is another theory for part of the issue.. Speaking to one of the doctors today with all this information he thinks the way Dylan is reacting to his medicine and the high Neutrophils is actually down to the Hydrocortisone, and it tallies up, because we changed him onto the liquid version exactly when all this started and it's after that dose he gets worked up not the chemo. It can create a 'stress response' pushing his Neutrophils up to a higher level and cause him to react the way he does when they administer his meds, so tomorrow we are going to try going back to the powdered solution which  you dissolve in water instead.

This however doesn't explain the random fever sadly. He has previously given himself temperature spikes to 38 that self resolved once before, when he was getting worked up and stressed, so I am begging it is that. He is sleeping now and feels warm ish but not hot at the moment *touch wood, I've just checked with the thermometer and he has no fever (yet).

The catch 22 here is that I know he is over tired because he didn't sleep great last night so I don't want to keep disturbing him, as he gets extra crabby and stressed when he is tired. BUT I also don't want to leave him and miss a fever spiking. Mike is working tonight so I am literally on my own stressing out. Part of me wishes they had kept him in but then if there isn't anything clinically wrong with him at the moment he would just be wasting a bed.

Praying for no infection and that all of this is just a stress response we can get to the bottom of tomorrow. Praying for a peaceful, safe and settled night sleep.. <3

Make A Wish

We had not told many people that we are planning on going to Disneyland until the pack arrived today.. we are weary over jinxing things in case Dylan gets poorly beforehand but also because sadly, those we have told gave us mixed reactions!

We approached Make A Wish when Dylan turned 3 (the qualifying age) which was shortly after we nearly lost him last Easter..

We were in a bad place and still in hospital when we applied to Make A Wish based on the recommendation of our Clic Sargent worker.. The idea was to give Dylan the chance for something special to celebrate him being so brave and going through so much, plus we also didn't know his prognosis going forward so we wanted something to focus on for the future and to give him some happy memories.

The application was never made just to ''get a free holiday" it was made to give Dylan the chance to ask for something he wanted not us. We weren't even sure what he would ask for, and when the pack first arrived we all found it hard to think of ideas..

The pack they send out is split down into sections such as.. Gift, Day Out, Celebrity Experience, Makeover (e.g. Bedroom), Holiday etc. You have to write something in each individual section of the pack and we really struggled to be honest. He first told us he wanted an iPad but we had already ordered him a similar tablet for the following Christmas. He LOVES theme parks so he said a day out at Legoland, we already had tickets for later in the year! The only 'celebrities' he wanted to meet were all Disney characters (typical three year old) and he wasn't interested in a new bedroom, as he hadn't even spent many nights in his 'new' Disney cars bedroom he moved into with his brother at Christmas when he became poorly. Yes we could have done with a garden makeover maybe but that would have been for us not Dylan and that isn't the way it works.

When we talked about the 'holiday' section it was quite an alien concept to Dylan as he hadn't ever been on a holiday really except to Disneyland when he was a toddler which he didn't remember. We explained what a holiday was but of course Dylan can't travel by plane or even go in the sea or swimming (we didn't know about the dry suits at this point). Then when an advert for Disneyland came on the tv during an ad break he suggested it so we agreed and wrote it down in that section.

We knew that Make A Wish work closely with Disney and often get significant discounts and freebies for these types of wishes, which is why it is such a commonly granted wish that requires little fundraising unlike others. You often see them campaigning for funding a child's wish on their Facebook page for example for things like Spa pools. But even so we didn't expect such a quick response..

When the reps from Make A Wish visited us at home they wrote Disneyland down out of his options straight away. At the time we hadn't been discharged from hospital long and none of the doctors were sure if there would be more lung collapses or even his prognosis short term..  so the whole thing was put on hold to be reviewed early 2017 alongside his CT scan.

FAST forward to February this year and we were prepared to revisit this decision with Dylan's consultant at his review but we didn't get that chance... A few days before his review appointment a letter from Make A Wish turned up stating that his wish to go to Disneyland had been officially granted! Prof. Grundy had already spoken to Make A Wish and said he could go. We had to wait for Bryce to do his SATS in May but the holiday was arranged for us.

Truthfully I cried.. a lot! This is not only a very well deserved treat for Dylan but for all of us.. Bryce has also been so brave and strong in facing the worst thing imaginable, loosing his brother and best friend, and he also has missed out on so much time with his family, having to stay with my parents for almost 2 months solid. We had to cancel our planned holiday to California back in 2016, during which we were supposed to be visiting the Disneyland there and we have no clue if we will ever get to take them now so this is a nice consolation.

When I mentioned we were going to Disney to somebody their first reaction was to say.. "oh through a charity" and that was difficult for me to respond to. I found it extremely hard to admit we needed financial help when Clic Sargent approached us last year. They filled in our DLA forms for us and pointed us in the direction of charities to help us such as Cyclists Fighting Cancer to help with Dylan's physio, SuperShoes, Merlin's Magic Wand and of course Make A Wish.

The thing I was told, particularly about 'Make A Wish' trips, is that it wasn't about the money.. it is, however, about an experience that only they can provide and that it is for the children to feel special and provide a small token to show them how amazing they are and how it absolutely sucks they've had this happen to them.

Yes we could have afforded to do a cheaper version of it ourself next year maybe if we'd have saved (we obliterated our life savings early 2016 travelling and staying in hospital) and if we sacrificed on things such as replacing our garden fence that is literally falling down. We also wouldn't have been able to purchase Merlin annual passes in the sale, for the first time this year, as Disney is only FOUR days out of a whole year of needing to keep three boys entertained. A lot of you know we don't generally go anywhere or do anything 'normal' families do such as soft plays or busy parks because of the risks to Dylan, and truthfully the lack of friends to socialise with these days.

The other common reaction is.. "aren't you lucky" and I assure you it takes all my effort to not be impolite in my response.. because I wouldn't call what we went through 'lucky' at all!! You are welcome to take our tickets and go on the holiday yourself if you take the Cancer and all the bad memories along with it... deal?

The truth is, Make A Wish do not just give out these wishes to everybody that applies. The criteria is quite strict and sadly often only terminal children or children whose quality of life has been severely impacted on, get granted their wishes. The qualification mark for Make A Wish children, as I've shared on a previous post, is quite simply that their life be in jeopardy. Children are either not expected to make it to adulthood or that their illness could take their life without warning. And despite how well Dylan is doing now since last Easter he does still fit into that category.

So before you feel that tinge of jealously, or pass an ill thought out comment.. please ask yourself which would you rather have? A holiday to somewhere such as Disneyland? Or to not live in fear every single day that your child is going to die like I do? And ask yourself, haven't our boys been through absolute hell? Do you not think they deserve this? Truthfully we all need this holiday right now to make some new happy memories to outweigh the bad ones.. <3

Forgotten Update!

I keep forgetting to update regarding Dylan's blood counts last week. There were no major issues to report so it completely slipped my mind to be truthful.

The community nurses rechecked his counts on the Wednesday and his neutrophils had come down to 1.7 which was fine. They have been done again today and they are 2.5 which is ok also. He did end up with a cold virus last week which he still has the remains of now.

Thankfully we do not seem to have suffered any adverse reactions from all the chicken pox exposure (touch wood) and there were no new cases before they broke up on Thursday which hopefully means we've broken the cycle and Dylan can come off his antibiotics this weekend in time to go back to nursery.

We've got some very exciting plans coming up soon so all the germs need to stay away from us!!

High Neutrophils

Dylan's blood counts this week are a bit abnormal and I had to double check them with the hospital however they are correct. His white cell count is up at almost 7 and his neutrophils are just over 5 which is high for him, especially the week after Chemotherapy when he would usually sit between 0.5-1.5 at most.

This is a cause for concern with myself, but not with the nurses *yet as Neutrophilia (abnormally high neutrophils) is usually classed as 8 and above. However because it is higher than usual it indicates the start of an infection.

Dylan did wake up complaining of a snotty nose this morning but aside from it running a bit today and some sneezes he has no other symptoms of infection.. yet.

Typical infections to cause high neutrophils are things such as..

Staph Infections.. which Dylan previously had around this time last year actually and it caused a fever and needed a weeks worth of IV antibiotics in hospital. So I am hopeful it is not that truthfully as Mike is working 6 days this week so it would be a logistical nightmare to have a hospital admission. But needs must of course as his health is priority.

Bacterial Infections such as E-Coli or another sickness bug which is a possibility as Dylan went to a party at a soft play over the weekend where I know there has been cases previously over the years. A soft play area is a tricky place to clean properly if there has been an accident or a sick child. Dylan did have a sickness bug over Christmas and I do recall the first day we took him in his neutrophils were at 3+ then so it wouldn't surprise me at all if he was sick tonight. As long as it doesn't come with a fever and doesn't persist longer than 24hrs it would be treatable at home.

It could also signify bacteria in his line so of course I am watching him for fevers more so than usual especially as his line was accessed today.

And of course viruses such as... CHICKEN POX the one ruddy virus I know he was exposed to AGAIN exactly 2 weeks ago so today would be prime timing for symptoms to be showing. Yes he is on antiviral medication but it is not fool proof and you can still develop the virus even on Acyclovir sadly. This would also mean IV antibiotics so I am on spot watch tonight as well as fever watch! Maybe I should just sleep on the floor in his bedroom!!

Typical, just as I've started to relax a bit more because we had some good news last week. Just as I'm starting to prepare for some more exciting news this week. This is not a spanner I wanted in the works right now but then I'd rather get whatever it is out of the way now than when we have plans next month I suppose..

Dylan seems fine in himself at the moment.. he is in bed (playing not sleeping little monkey) and his SATS are all ok, his heart rate isn't even elevated which it previously has done with infections. I am praying it is literally just a cold virus and we just happen to have caught his bloods the day his levels are at the highest. The hospital didn't seem concerned but they've requested the community team repeat his blood count either tomorrow or Wednesday so I should find out about that when the call to schedule it in the morning. For now I guess I just have to sit tight and wait for whatever it is to show itself and pray it is nothing serious.. <3

Feeling Frustrated

Dylan is starting to get fed up now and the feeling is mutual.. but the end is finally in sight, we hope anyway!

We had a clinic appointment with Prof. Grundy on Wednesday and have our 'End Of Treatment' clinic appointment date and the date Dylan will have his last Chemotherapy dose and ring the end of treatment bell has been pencilled in the diary. This is pending successful scans before then of course and we don't have a date for his next CT scan yet, they usually only schedule them a week or two in advance.

I can't pretend we aren't counting down the days now. Dylan's panic attacks are getting worse. He is getting more melodramatic over minor issues such as falling over or being told to do something he doesn't want to do. He is getting worked up and scared over his Chemotherapy when it has never bothered him before.. This week he has actually made himself sick at one point he got so frightened and worked up. He hates having his sats checked and won't sit still then starts crying / whinging.

His night terrors do seem to have stopped though (for now) and I can't help but wonder if this is because he is now trying to process these feelings more vocally in the daytime.

He talks a lot about his 'wigglys' (Hickman Line) now and the fact his friends don't have one. He often asks when it will be gone and when he can go swimming properly. I think he is starting to realise he is different now he is getting older and I think it is difficult to process at his age. He is old enough to understand certain things but not others which make it a tricky path to navigate.

We are waiting on a referral for somebody to come and help him process these feelings and emotions but I don't know how long it is going to take as it has been a while already. We are trying our best but sometimes we feel lost and unable to help him. It's a bit of a catch 22 because some of it is behavioural which needs stopping of course but some of it is symptomatic of PTSD, which I already suffer from, so I know needs dealing with calmly and with understanding. It's tricky to know which is which. What is just a typical four year olds tantrum and what is a reaction because of PTSD.

Hopefully we will get some help soon to navigate this mine field and help him process his emotions. I hate going to bed each evening feeling like I've failed him and not helped him properly. It is emotionally draining watching your child struggle mentally and physically.

The Waiting List

There is a boy (well technically he is a man now) that we know in the US whom 11 years ago had a lung (and liver) transplant because of Langerhans Cell Histiocytosis. The LCH was in his lungs, amongst other places, and had caused cysts like Dylan's. His mum has once told me herself that his lungs were 'nowhere near as bad' as Dylan's were. So why, you may be wondering did he have a transplant?..

Because the doctors did not know what was wrong with him. They had no idea what he was suffering from was LCH, and like with Dylan last January, they thought lung transplant was the only option. As I mentioned previously he also had a liver transplant for the same reasons.

Great problem solved!! Erm well actually no.. because the rogue Langerhans cells were never treated so it returned in the new lungs. This time around they diagnosed him and treated the problem with Chemotherapy. Fabulous, happy days right?!

There is a common misconception that transplant solves all issues. It is a misconception that I once had myself.

When I was originally told Dylan would need a double lung transplant I naively thought that would fix the problem, that he would have a new healthy set of lungs. Taking away for a second the chance of recurring disease.. I knew about the anti rejection drugs that transplant patients need to take but I also knew of people living full happy lives after liver and kidney transplants. I thought as long as the disease couldn't come back we'd be fine. Then I got hit with the bombshell that double lung transplants don't come with a long life expectancy.. the average is 5-10 years before patients suffer Chronic Rejection of the organ.

That's right. 5-10 years. Some people don't last a year, others make it 20+ but the average is between 5-10 years. Ok so then you just have another transplant right? That's what we commonly get asked when we talk about transplant. The answer is usually a resounding no..

The wait time for a double lung transplant isn't as long for a child as an adult as they do tend to get priority now adult lungs can be made smaller and used. Also there aren't many children waiting for double lung transplants compared to adults. But the problem lies with how do you keep a patient alive, adult or child, when their lungs are failing?!

I am by no means a medical expert but I do have some knowledge so I can outline the basics..

When organs fail, certain things can keep people alive whilst they wait for a donor such as Dialysis for example. Even heart transplant patients can be kept alive whilst they are on the waiting list. Just recently there were articles shared about a young boy in London being on an artificial Berlin Heart for 3 years whilst waiting.

This isn't always an option for the lungs. If you can survive with a ventilator breathing for you without deteriorating then great.. you can have a Tracheotomy and wait it out that way. But if your lungs are failing even a ventilator won't help. When Chronic Rejection occurs in the lungs they become stiff and difficult to move up and down even for the ventilator and a person will deteriorate.

There is a machine called ECMO which effectively oxygenates your blood and organs without the need of the lungs, but it is only a temporary option. The average time ECMO is recommended for is 5 days but it can be used for up to 25-30 days. Any longer and the body starts to suffer adverse effects such as brain damage. Yes you read that right.. DAYS.

The average lung transplant waiting time is currently 3-6 months but it can be up to 3 years plus if you have a rare blood or tissue type.

This is why lung transplant is a last resort and why you'll often hear us say we don't want Dylan to ever need to have one. Yes his lungs will always be damaged but if he can survive and live a fairly normal life with what he has (yes he may never be an athlete) it is a better option than putting a timer on his life expectancy..

THIS is why we support Organ Donation as we believe this waiting list should be shorter giving people more chance of survival and secondary transplant. Certain countries actually have an 'opt out' system now rather than 'opt in' so patients are automatically candidates for transplant unless they state otherwise. Whilst I do not think this is the answer, I do think more people should be willing to give if they'd be willing to receive. Same goes for Blood Donation and we are advocates for that also.

This is also why we raise awareness of LCH and particularly Pulmonary Langerhans Cell Histiocytosis.. so doctors know what to look for and recognise the symptoms and characteristics of the disease maybe avoiding transplants in some cases and providing quicker access treatment. Especially PLCH because it can become life threatening very quickly. We literally need our lungs to survive.. so be thankful for every breath you take today!🎗💙

Outliving Your Children

This past two weeks I've been reflecting a lot more on last year and have found myself questioning the future. Easter is a time for resurrection and new life but for so many that is not the reality and they are instead facing the end of their lives or their children's..

No parent should outlive their children but for so many it is a reality. It's a reality, that I think, it is easy to be oblivious to if you've never faced it. I've faced miscarriages before but even that didn't prepare me for the world as I know it now. These things are the things that often people think 'it won't happen to me' because it isn't talked about. The taboo of baby loss is slowly being broken thanks to charities such as Tommy's and Count The Kicks etc and I think that this should be the same for all child loss for whatever reasons. 

I follow lots of families in similar situations to us, some with children with Cancer(s), some with chronic illnesses, some with babies that haven't survived after birth and some with disabled life limited children that are currently 'making memories' whilst their precious children are receiving end of life care. It breaks my heart and even though Dylan is doing well now in comparison to last year, I find myself worrying about his life expectancy with the damage all this has caused to his body.

This is why we try to focus on making memories with our boys and enjoying as much time together as possible. We purchased Merlin annual passes in the sale this January to enable us to take the boys to the theme parks that they love as much as they wish without the worry of money (besides petrol of course).. It is a small way to make up for the fact we cannot take them on holiday abroad properly due to Dylan not being allowed on a plane. Mike had the first week of the Easter holidays off and we made the most of that and tried to fit in lots of activities which not only help make memories but also keep our minds busy and too full of love to dwell on the negatives. Sadly these thoughts don't stay away too long though.

Dylan's birthday is next week and I remember being too scared to even buy his gifts last year in case he didn't make it. It makes me wonder how many birthday's lie ahead of him. Will he make it into adulthood? Will his lungs be good enough to support his growing body? Will it come back again? Am I going to outlive my child? The answer to that last one is probably.

There are no real answers or statistics for Dylan as he is so rare. I only know of one case like him that are now into adulthood and doing well but that is ONE case! All it'd take would be him to decide to smoke as an adult and it would likely come straight back.. that is why people aren't allowed to smoke around Dylan because even though it didn't cause his cells to act the way they did, it could reactivate the disease.

You cannot live in the past or the future only the present. The past is painful, the future is frightening but the present is perfect right now. Every day I pray for another perfect day. And I pray other families I know get another day of making memories..

 

Charlie

I have been asked a few times for my opinion on the court case and situation of baby Charlie and I have refused to express any form of opinion. We were even invited to the BBC to do an interview for today on the matter, as parents who have been in the situation. We already had plans to take the boys out but to be honest I would not have wanted to be interviewed on the subject anyway.

The reasons for this are varying but some of which are of a personal nature from myself. Having previously had my words twisted and feeling personally attacked by comments I did not want to be back in the 'limelight' nor open myself up to more abuse. I have had some horrible things said to me over the last 6 months, some of which have caused deep emotional scars and left me a different person unable to socialise properly with others but I digress a little.

I also feel my opinion would always be seen as coming from the mother who 'wanted to turn off' her son's life support therefore it will paint me as biased and potentially unsympathetic to the parents' cause which is NOT the case at all. It is an impossible no win situation and I think the parents have been so strong in their fight, and I hope their strength helps them through what lies ahead of them next.

Our situations whilst similar were also different and unless you know all the facts it is impossible to side with the parents or the doctors and give a fully informed opinion. The truth of OUR situation was that Dylan was suffering and deteriorating rapidly. Putting aside his 'miracle' recovery for a moment and just looking at the facts of the 48hrs prior to switching off the Rocuronium (paralysing drug)...

We had 'potential' treatment options to buy him more time such as Ecmo or transplant but Dylan's oxygen levels were critical even on the highest oxygen level and vent settings and every time we even tried to move him for an X-ray he deteriorated more so there was no feasible way he would have survived a journey to another hospital let alone either procedure. We had no other options it was that simple. We could either turn his life support off and pain relief up to let him slip away peacefully and pain free in our arms or we could sit back and watch him deteriorate, clearly suffering, and then go in to cardiac arrest suddenly as he was at risk of doing 'any moment' overnight at one point. Now tell me, if those were your only two options.. which would you rather?!!

Yes that never happened and by some sheer miracle turning off the Rocuronium was enough for us to see he needed more sedation*  and once comfortable his heart rate stabilised and he gained enough strength to start to fight back** gradually but that isn't what usually happens. I do not want our story to be the thing that provides parents in this situation false hope, especially now the ability of Intensive Care doctors may now be questioned more in these sort of situations.

*2-3yr olds are notoriously hard to sedate AND he also has potential EDS which burns off sedation even faster.. normally what he was on would be enough to sedate a young adult.

**this and blood tests confirming his organs were still functioning caused us and the consultant to STOP the process of removing life support. He remained on ventilation without the Rocuronium drug until he was stable enough to breathe by himself again 9 days later.

The ONLY comment I will make, for any parent facing such a heartbreaking decision, is this and it is partially a quote from an intensive care consultant.. There comes a time when you are doing things TO the child and not FOR the child. And that is what must be considered in these situations. Parenting means putting your child's needs first and yourself second. </3

Germs Germs Germs!!

When you know your immunocompromised child has been in contact with somebody that is unwell you literally feel like you are waiting for the inevitable. We do our utmost to protect and prepare for these situations but sometimes things are out of our control. Not all illnesses show visible symptoms until it's too late and the germs are already spread around. Other times sick children are dosed up on medicine and sent out to mingle with others because it's only something 'minor' and they seem fine.

Sadly what is 'minor' to one could be major to another and I think people genuinely do not realise this, because unless you've been in these 'Cancer Parent' shoes you wouldn't to be honest. This is why schools with sick children do try to police these things more so than their attendance records and they will try to make other parents aware but it isn't always followed. I'm lucky our school is pretty amazing with this but there are always risks and those who don't seem unwell to the outside world.

We have been lucky that the general cold viruses of winter have come and gone with no real effects. The one that hit us hard over Christmas was a D&V bug which was caught from somewhere outside of school. Sadly this what I'm anticipating we may have caught unknowingly now. Dylan doesn't handle being sick very well, he panics that he can't breathe and then ends up hyperventilating (which is not good for his lungs) and almost passing out.

Of course there has been numerous Chicken Pox incidents and we are now at the peak of that season.. as predicted Dylan starts his third course of preventative antibiotics this weekend because of contact with Chicken Pox again, but that is impossible to avoid because you are contagious for 48hrs prior to any symptoms or spots. This is why it is such a common childhood illness but it can have devastating consequences for people with low immune systems.

Truthfully anything contagious that causes a fever is a danger to Dylan.. sadly this is one of the most common things children are sent out into the world with after a dose of calpol. Oncology patients aren't allowed to be given calpol, even if they develop a fever. A fever is one of the first warning signs of serious infection and in patients with a Hickman Line or Port it could signal a line infection which can be VERY dangerous as of course it is a direct line to the bloodstream. Calpol reduces fever and therefore can cover up serious underlying issues. This is in fact one of the things that happened last March as Dylan was having paracetamol for pain relief so his fever was masked by this and we weren't aware he had an infection until it was serious.

Dylan also has previously had what is called a Febrile Seizure because of a fever. These are more common in under threes (some people state under fives) but if you have had one before it can indicate a person is more prone to them. It is the body / brains reaction to a rapidly rising temperature. Dylan's febrile seizure(s) caused him to stop breathing and need CPR and ventilation so I would rather not have that happen again as I do not want to be back where we were last Easter. I wouldn't wish that on anybody.

Keep us in your thoughts and prayers that we survive the night / weekend with no adverse effects of these germs he has been in contact with. We were supposed to be attending a birthday party tomorrow but IF we make it through the night with no illness I will likely not be sending him as it is mostly nursery children so I'd rather not risk more potential D&V exposure should we be lucky enough to avoid it. If he is well enough it would be wonderful to get outdoors and enjoy the sunshine! <3

*Apologies for the double posting tonight, I'm making up for lost time now I have a (half) working app!!

Lost For Words Today

On my way home from shopping today I drove past a funeral procession waiting to start it's journey. I knew instantly it was clearly for a child and it hit me particularly hard this week as my emotions are running high. I cannot even begin to fathom how the family must be feeling right now. If for any reason you come across this blog, I know you will have heard this a thousand times over but.. I am so so sorry for your loss. And I do not say that with empty sentiment I promise.

Last March I sat planning my child's funeral, I don't talk about that side of it much but I did. It was the only way I could process the situation. I had no control over what was happening to Dylan and planning what I would do, say, wear, sing.. those things I could control and in the hopelessness of March 24th-28th it seemed inevitable. We were lucky, others are not and I cannot imagine walking in those shoes..

Now that part is over, the really hard part begins for those families.. the living every day from now onwards. I cannot offer any words of wisdom, any little anecdotes or quotations that might help because truthfully if you haven't walked that path you simply do not know. We got a glimpse of that path briefly and took a few steps but we never saw the full journey ahead.

I do however strongly recommend anybody wanting support following the loss of a child to visit www.sayinggoodbye.org

Love and prayers, The Askin Family xoxo

Baptism

Today was a year to the day since Easter Saturday 2016.. the day we said goodbye to our little boy and started the process of 'active withdrawal' i.e. stopping treatment and removing ventilator support.

We told them the day before, when we were pulled to one side and advised to consider switching off Dylan's ventilator, that we needed more time and we arranged to have him baptised. Being that it was Good Friday that was no easy task but the hospital chaplain went above and beyond to contact the Catholic priest who came and did the ceremony for us.

Despite the situation, his words stuck with me that day, "when Dylan is better I will redo this and baptise all three boys together"..  however, Dylan worsened over night and was at a very high risk of cardiac arrest so we discussed and agreed on a DNR and just prayed he would get through until morning so the rest of the family (his brother etc) could be by his side. Of course then at the point of saying goodbye he showed signs of fighting so we held on.. which again somebody else had eerily predicted.

Father John came back to Dylan's bedside on Easter Monday afternoon and said a healing prayer and that was when the real changes and improvements slowly started to happen!!

So today our THREE superheroes were baptised together by Father John at his church, surrounded by family and their new God Parents. We chose this date as a way to turn a day full of traumatic memories into a day full of happy memories for future years to come.. <3

Memories of Easter 2016

This last 12 months have gone by in such a whirlwind and time has crept up on us whilst we've been busy enjoying life!

The date that Dylan collapsed at Little Nippers came and went with only a little reflection and anxiety from us.. but this week is the big one. Of all the times we've almost lost Dylan the events of this week are cut the deepest. [It also doesn't help that Dylan's story is about to run in the media again on Tuesday and yet again it focuses on me and my supposed guilt and generally makes me out to be a terrible mother but I digress. Please excuse my terrible writing this evening!]

Yesterday was the day he stopped breathing on the ward and frightened half the staff, patients and families. Today was the day he had his MRI and CT and we hoped he was stable enough to be extubated fairly swiftly but of course then he just got sicker and sicker. I remember the tension pneumothorax from the ventilator and him going grey, the rapid blood transfusion that instead of being dripped in slowly over a few hours was literally forced in as fast as possible by a nurse squeezing the bag. I remember the further tension pneumothorax that almost sent him into cardiac arrest.. one of the consultants stuck a needle in him before the X-ray even arrived as he was literally going on us. I remember being hysterical, not wanting to leave him but not wanting to watch as they pumped adrenaline into him and prepped him for more chest drains. I remember seeing the oxygen level come up from 30% to 80% and not feeling relieved because I sensed it was going to keep getting worse which it did.

I remember feeling utterly defeated on the 25th and then completely in denial on the morning of the 26th. Even though I saw it coming and wished his suffering to end I didn't want to loose him. I was torn between wanting to be selfish and keep him forever and loving him so much that I wanted him to be free from pain. And that is how I felt not what the magazines or newspapers will have you believe. Not 'guilty' per se but TORN in half.

Of course then Dylan did his little miracle and showed signs of fighting back, and test results contradicted everything any doctor could imagine. But our little superhero never did read the textbooks! Slowly but surely we got him back and I am thankful every single day. But I am also anxious every single day, and these memories definitely increase that ten fold.

I know of other Histio families currently going through the ICU ventilator / life support hell this very moment and I feel as if I am right there with them sometimes, feeling their pain and definitely shedding a tear for them. I only hope that you get the outcome we did. Histio isn't fair. Cancer isn't fair. Non of these illnesses that take precious lives are fair let's face it..

To be 100% truthful, life isn't fair but it can be wonderful too sometimes so live in every moment and cherish the good and the bad days, as time is fleeting.. <3

Bigger Picture

Sometimes it's hard to see the bigger picture when you feel like you're drowning in hospital appointments, Chemotherapy, health scares and the day to day caring for a sick child. Sometimes information changes, appointments change, treatment dates change and the light at the end of the tunnel seems to get further away rather than closer..

I've always been a very grateful person, even before all of this, and I try my utmost to appreciate life and all it's ups and downs. I've always felt that somebody, somewhere is always worse off and wishing they had what you may take for granted. But we are all only human and sometimes we all have moments where we just feel overwhelmed and fed up.

We've had a good few months since Dylan was discharged in May.. in fact it won't be long before it's been a year since his little Easter 'miracle'. Aside from one major infection, some snotty noses and antibiotics for chicken pox exposure, we've been fairly lucky. I just wonder how much longer our luck will last sometimes.

Dylan had another CT scan last week and we finally got the results today and yet again they are amazing, lots of cysts gone and mostly just the larger ones remaining. The plan now is to continue with the Chemotherapy the same as it is and review it in August again potentially with another scan.

We still don't know when Chemotherapy will be finishing officially but we do now have a vague idea when his end of treatment review might be. Unlike with other Cancer's there is no set timeline or protocol to follow. No standard tests and no statistics to show that 'this amount of Chemo will get rid of the disease.'

They had talked about running a few additional tests to see if they can tell whether the LCH has now gone but short of doing another biopsy (which is too risky) there is no way to really know. You see the leftover cysts aren't actually the disease, they are just the damage it has left behind and no amount of Chemo in the world will fix them.. that is his body's job to try and do that.

It can all feel never ending sometimes.. another blood test, another chemo, another scan. The main thing to focus on when you feel like you're drowning is living every single day to it's fullest and fill your life with happiness whenever possible to keep yourself afloat.. <3

Missing Normality

Tonight I am sitting upstairs in bed full of cold whilst the boys are all sleeping and Mike is at work.. normally I would be trying to sleep or finishing the ironing but I cannot switch off lately for various reasons so I find myself writing as a distraction. I have tons of half written blog posts saved on my phone, but tonight I am taking the time to finish this one while I finish my lemsip!

I am more on edge than usual this last month, there are reasons behind this but some of them I cannot divulge at the moment. Others are things like Mike working more and more night shifts so I'm alone in the evenings with my thoughts for company and nobody to tell me I'm being irrational! Special dates and milestones coming up.. including that awful date he went into respiratory failure at Nippers which is looming. We've also had a few worries over Dylan's health due to him being exposed to very sick children at nursery, a concern over diabetes, the whole norovirus episode at Christmas.. and now me being unwell myself. How am I suppose to protect him from getting ill when I'm his primary carer and I'm ill myself?! Trying not to breathe on him is impossible when he flings himself at me and squishes my face for kisses!

It's also Chemo week here in our household AGAIN and that's the week I'm most on edge of all. We've had a good run lately with the Hydrocortisone combating the effects of Cytarabine but every cycle I doubt whether it will work properly. Completely irrational and illogical of course as there is no reason it should suddenly stop working. I also worry myself sick about his Hickman Line and infection.. I am so overprotective of that damn line it's like it's a fourth child!!

More and more nights I'm finding myself suffering insomnia.. reading things online about Cancer and other children suffering or even loosing their fight (sometimes people we know) and it makes me so sad for them and their families that it actually keeps me awake in tears. I cannot get back the naivety I once had to these things happening in the world. They are real and they are awful and if you are part of this Oncology or even Chronic Illness world then you have my sympathies and my prayers..

I find myself praying every night, to whoever may be listening.. I pray for the selfish things of course such as that Dylan will be ok, that this cycle will have no side effects, for good counts, for no infections, for his lungs to be healing. I pray for myself sometimes, for help with my anxiety, I pray I can sleep more than four hours so I can face the next day. I pray for my other two children, that I am being a good mum to them through all of this. I also pray for all those suffering.

I also find myself asking what happened and wondering.. why us? Not why did he get sick, but more why did he survive the unthinkable when so many don't? Why do others suffer so much and in what universe is it fair for innocent children to suffer?

Sometimes I miss the normality of living life oblivious to all of this. Cancer has hit our family before numerous times but when it's your child it is different. It has made me a better person in so many ways but it has also changed the way I see everything in life now. This is one reason I stay off Facebook and just use this blog. I literally have to stop myself from taking things people say to heart, such as.. 'is there anything worse than breaking a nail?'

I wish I could go back to being that naive and focusing on all the 'first world problems' as they are often called but I can't and I have to accept that those that haven't walked in these shoes simply cannot understand. I am fighting a battle in my head every single day between trying to live a normal life and what is now my new normal view of life.. <3

Teaching Children to Dial Emergency Services..

Does your child know how to phone an ambulance in an emergency situation? Any child with a basic grasp of numbers and how to use a phone could be a potential life saver in an emergency..

If a child dials 999 off a landline the call operator will automatically be able to pinpoint your address although it's never too early to teach your children to memorise this anyway incase they are ever lost or if the only option handy is a mobile phone.

Even with keypad locks on, all mobile phones should allow you to bypass this in order to make an emergency call so make sure you show your child how to do this.

Does your child know where you keep the house keys and could they unlock the door for the paramedics?

You don't need to be the parent of a chronically poorly child, or ill yourself to benefit from teaching these things to your children. ANYBODY can have a fall that renders them unconscious and children may be frightened if they cannot wake their parent. Teaching them the basics of dialling an ambulance is a very important life skill.

Dependant on age you can go into more details.. Bryce for example knows the basics of his brothers condition and how to explain it on the phone. He knows our full address, he can reach my keys off the key rack and knows where I keep them upstairs at night. He can recognise which key is which and unlock the front door. He also knows where Dylan's emergency medication is and is sensible enough now not to abuse my trust of him knowing these things.

On a slight tangent, It is also handy to have a fire escape plan in place in your household, especially for overnight. If access to downstairs is impossible, knowing which window(s) you could safely escape from with the children could save valuable moments in a high stress situation. Keep car keys and window keys upstairs at night if possible. In the winter in particular, having the car keys handy would mean you could put the children into the car to keep them warm in their pjs or drive them to a friend or family member once the fire service arrived.

Bryce knows it is a possibility in our household he may have to step up and phone an ambulance one day so he should be able to stay calm knowing how to do it and all the facts. In fact the entire reason for me writing this blog post today is because we nearly had to use our emergency plan last night..

Dylan has started to have panic attacks if he feels unwell. It is clear now that this was actually what happened on Boxing Day when we called an ambulance out to him. Last night he woke up congested and panicked because he couldn't breathe through his nose. Then he started to hyperventilate and couldn't catch his breath. He started going a bit grey and wobbly like he was going to collapse. At first I thought his lung may have collapsed again, like we also did Boxing Day, so I got Bryce to get the phone and keys ready incase I needed to give Dylan CPR. Once he calmed down with some basic breathing counting with me I could clearly see he was fine and his numbers on his monitor were perfect. We talked about it this morning and it is fairly obvious now he is suffering from anxiety attacks which is hardly surprising given everything. When he feels unwell he panics that he can't breathe or that something is seriously wrong and it causes him to have a panic attack and hyperventilate. Hopefully with plenty of reassurance this phase will pass but if it becomes a common occurrence that we cannot help him with we may have to find out about some play therapy.

I hope you never need your children to deal with the very grown up task of dialling an ambulance, but like swimming, it is a very valuable thing to learn just in case..

FAQ

Q. Did Dylan have any symptoms prior to his first lung collapse on Christmas Day?
A. The week prior to Christmas he had cold like symptoms for around 48 hours or so, so when he developed a minor dry sounding cough on Christmas Eve we thought it was because of this. Until he started to get breathless across the course of Christmas morning there were no other visible symptoms.

Q. Do you feel anything could have been done differently to diagnose Dylan sooner?
A. The only thing that may have sped up Dylan's diagnosis would have been an earlier biopsy. At first the doctors were looking for a genetic condition so they believed blood tests would show this. A biopsy was only taken after his second collapsed lung. Truthfully they almost didn't take the biopsy, had they not done he wouldn't be here today as LCH would not have shown on any blood test they ran.

Q. Do you smoke?
A. NO we do not smoke.

Q. Have you tried alternative medicines or therapies?
A. We do not take medical advice from anybody other than Dylan's consultants and those they seek advice from so please respect our wishes and do not offer unsolicited advice on this matter. This is not through us wishing to be rude, but so little is known about LCH we would hate to accidentally trigger a reaction.

Q. How is Dylan?
A. Dylan is doing amazing at the moment. His last CT scan showed his lungs have gone from being 80% cystic to approximately 20% and he maintains good sats without oxygen. He runs around, plays and attends nursery like any other boy his age. On the outside you cannot tell he is ill or what he has gone through at all.

Q. Is Dylan still receiving treatment?
A. Yes Dylan is still receiving treatment at the moment. He is having two types of chemotherapy every three weeks.

Q. Does Dylan still have Cancer?
A. Technically not, what Dylan has now is the after effects of Cancer. The LCH is now classed as 'Non Active' but there is lots of damage to the lungs caused by the disease when it was active.

Q. Does Dylan still have seizures?
A. Thankfully Dylan has not had another febrile seizure since March 18th. Febrile seizures are actually fairly common in children and they often grow out of them by approximately age three.

Q. What actually happened over Easter 2016? March 18th he had a febrile seizure and stopped breathing. He was ventilated to help him breathe but he gradually deteriorated and suffered more collapsed lungs and infections. Good Friday we were told he was likely not to survive his oxygen levels were drastically declining and his lungs were seriously infected. Easter Saturday the doctors discussed there being nothing more they could do for him and turning off the ventilator. We started the process by switching off the muscle relaxant and discovered he needed more sedation. Upon doing this he improved slightly, just enough to make us question everything and then his blood results showed astonishingly that his organs weren't shutting down despite the very low levels of oxygen so we stopped the process and waited leaving Dylan's fate in his own hands.. Somehow he fought back after that and improved very very gradually over the next week and was awake and breathing by himself by April 4th.

Q. How many times has Dylan had a collapsed lung?
A. We do not fully know, there will be collapses that occurred whilst chest drains were already in place but we do know he had 26 chest drain procedures.

Q. What is Dylan's prognosis?
A. There are very few cases of Pulmonary LCH in children so we have little to base an estimate on. Providing the LCH doesn't come back, Dylan now stands a good chance of living a fairly normal life. His lungs are damaged however and at present there isn't enough evidence to predict how well they will heal or how his body will cope with the scar tissue as he grows so he will be reviewed into adulthood by the lung transplant team.

Q. What are the survival rates for Dylan's condition?
A. Survival rates for general LCH are quite high providing it doesn't attack a major system. Survival rates for Pulmonary LCH can be quite low if not caught quickly and if any respiratory infections are caught. LCH also has a high relapse rate.

Q. Is it a type of Cancer?
A. YES.. despite arguments over its classification over the years it is now recognised most places as a rare Cancer unlike other types of Histio. This is due to the type of cells (a dendritic cell that fights infection) that cause LCH. It can vary from mild (such as skin only) which is most common to serious and life threatening.

Q. Do you accept donations?
A.  We do not accept donations personally however we do lots of fundraising for various charities. You can find out more about our two main charities at teamdylan.co.uk