Beyond Heartbroken..

No parent should ever be in this situation, it's not the natural order of things and it's so cruel and unfair. I would give anything right now to fix this and I would trade my life for his in a heartbeat! I'm beyond heartbroken, I am shattered into a million pieces and I don't know how I am going to do this, I don't want to do this..

Dylan has generally been deteriorating for the last few days. He has had his moments where he has fought back as hard as his little body would let him but ultimately he is losing..

How do we get through this? What about Bryce? How does anybody lose a child?

"A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.."

– Jay Neugeboren – An Orphan’s Tale – 1976

Air Everywhere

Yesterday was absolutely horrific..

Dylan lungs were still leaking air only not in to the chest cavity where it could be drained.. there was so much it was filling up his entire body like a balloon trying to force it's way out any way possible.

He just got worse and worse, his lungs were deteriorating fast and we literally were standing there watching him die!

It got to the point where we couldn't keep his sats above 50% despite trying everything and they were dropping fast. We brought Bryce in to the hospital to say goodbye..

We rang to query Ecmo lung bypass again but Dylan is not a candidate because of his chemotherapy so we were fast running out of options. 

An urgent X-ray was requested, he was turning blue and his heart was giving up.. but before the X-ray arrived one of the consultants decided not to wait any longer and stuck a needle in his chest above his heart with a tiny tube into a cup of water!!.. Air started gushing out FAST!! 

His sats went up to 80% so she quickly sited a proper chest drain despite him already having one in both sides. X-ray arrived so we checked and sure enough air on the other side too, it was finally collecting somewhere we could deal with it!! Another chest drain number was put in lower right hand side..

Fluids and adrenaline were given and slowly slowly everything calmed down, his heart rate, his blood pressure, his 02 sats.. I felt like I could breathe again!

He has remained stable today despite a few hiccups, this means he isn't getting any worse. We are struggling to keep his O2 sats above 92/93 at points still but his lungs are very infected and compromising the little healthy tissue he does have.

I'm not sure entirely what the future holds, he is either going to fight off this infection and improve or he is going to gradually deteriorate, hopefully the first of course! As parents we need to find a way to balance out being positive and staying realistic and I think that is the hardest part of all of this. We feel in complete emotional turmoil and completely helpless, jumping at every change on the monitor, second guessing every thing we see and even looking for problems that aren't always there.

He is our baby though and all of this is so scary, I wouldn't wish it on anybody and I feel for the other parents on ICU and Oncology, and those all over the world having to deal with the awful reality of a child with a life threatening illness. My heart and my hope goes out to every single one.. <3

Rough Night

Dylan hasn't had a very good night last night...

Yesterday was fairly uneventful except for trying to source another suction controlled chest drain which ended up coming over from Leceister!

Otherwise things had gone smoothly all day, we had gradually weaned his ventilation down and were talking about him possibly coming off it today which was amazing!!

Dylan had other ideas. He had an episode overnight where he was literally fighting with the ventilator and not allowing it do it's job. His breathing was laboured, his heart rate went up, he developed a fever and generally took a bit of a downward plunge. The ventilator rates had to be turned right up as did his sedation so now he is not breathing for himself again this morning..

This infection has just taken over and knocked him back so much! He has very little fight in him either as he is still neutropenic. This means he has no white blood cells to fight off the infection. He is on so many antibiotics, but of course if it's viral they won't do anything at all to help.

It's like being stuck between a rock and a hard place.. the best way for Dylan to fight all this infection and the lung collapses is to be awake, breathe for himself and take deeper breaths, and cough up all this nasty gunk but he is struggling to do so because of the infection so it's a catch 22 situation and I don't think anybody fully knows what to do for the best..

We have officially now been ventilated for longer than last time too which is disheartening. Every day he is ventilated puts him at more risk of more infection.. more risk of cysts bursting and the lungs collapsing.. more risk of struggling to get him off it.. more risk of drug withdrawals when / if he eventually does get off the ventilator.. more risks in general!!

I just feel so helpless, there is literally nothing else we can do to help him it is just up to him to fight it, but what if he can't?

Bad Dreams

Last night I couldn't sleep, it took me a long time to relax and drift off. Once I did I had a number of bad dreams.. obviously about losing Dylan so these woke me up in a crazy panic each time.

The plan for today was to do his Lumbar Puncture (which they did) and then to turn off sedation and extubate him.. this did not happen. We haven't had a good day, the chest drains have been very temperamental at points, his oxygen requirement has gone up and down as has the CO2 level in his blood and his heart rate. His lungs just aren't working the way they should for whatever reason and it is so worrying as this is the point last time we were told things "weren't looking good".

We still have no conclusive result on his infection cultures but you can see on yesterday's CT scan that it is all on his lungs (pneumonia) which won't help this situation at all. It has also messed up the CT scan results so we cannot compare them very well at all which is a shame.

I can't help worrying that maybe this is too much for his little body and that he is just going to give up! I know how strong he is and that he will fight it the best he can but I am just so scared..

I handled Friday fairly calmly despite how scary it was, and even yesterday but today it has just hit me like a ton of bricks. He is so fragile, there are so many tubes and wires and it is just overwhelming to be back in this situation again. I can't fully express what it is like seeing your child in a life threatening state.. knowing the machines are keeping them alive so they can fight, knowing the bleeps and alarms off by heart.

He was doing so well previous to this infection and I just want to scream! People should not visit the hospital if they are sick.. and I am so glad the nurses and doctors picked up on the lady coughing away in the kitchen and sent her home yesterday or I may have lost it! When your child is 'medically fragile' you just want to wrap them in cotton wool but you can't, you'd think however they'd be fairly safe from infection in a hospital..

Febrile Seizure

So we've had a few days of drama with these chest drains! We went from having one on each side to neither of them working.. the left came out and the right wasn't in the correct place as the air was collecting in a different plural space than where the drain was. They left the right one in but added a second one lower down on Wednesday.

Then on Thursday afternoon the lower right one also stopped working and Dyaln got very distressed very quickly. A quick wiggle and it started working again but now he had developed a fever and a cough so antibiotics were started and we were sent back to the ward at 11.30pm where it was cleaner for him.

At 4am Friday morning Dylan woke up distressed and struggling again and another chest X-ray was ordered. The lower right had stopped working again! Ironically by the time X-ray arrived he had settled and fell back to sleep though but it needed dealing with so the plan was to reasses when he woke up in the morning..

Dylan woke up at 7.30am on the Friday morning, he seemed fine with only a little discomfort. His heart rate was still high so an X-ray was ordered. The X-ray came and went an hour later and whilst waiting for the results he started to get worse.. 

Only it was not his lungs causing the issues! He started to be sick and panicked because he couldn't breathe properly, we upped his oxygen straight away as his sats dropped to 46% and then his temperature shot up from 37 to nearly 40 in minutes (the earlier paracetamol had just started wearing off) and he started having a seizure. They had to massively sedate him to stop the seizure so then he required help breathing and had to be intubated and ventilated, he was then transferred back to ICU..

It appears he had a febrile seizure from infection, thankfully we had seen it coming and started the antibiotics the night before so he responded fairly quickly. He needed a blood transfusion as his levels were already fairly low from the chemotherapy and he was neutropenic which makes him more prone to infections anyway. Despite having the blood transfusion done quickly he went very grey.. upon X-ray it was discovered the pressure from the ventilator had caused both his lungs to collapse very significantly and the air accumulation was so large it almost crushed his heart from the pressure. Two new chest drains were quickly put in and he then started to improve.

He had a fairly settled night which was good. The decision was made that him being ventilated was the perfect opportunity to get the MRI scan done to check his skull and brain for LCH and also rule out any other reason for the seizure so Prof. Grundy pushed this through for this morning. He also managed to convince them to do another CT scan this afternoon that previously radiography had refused so that was good news as we can see how effective treatment has been so far.

The MRI results came back as all clear, this means there is no signs of Langerhans Cell Histiocytosis in his skull or pituitary gland etc. and no other reason for his seizure except infection. We are still awaiting the blood culture results and a lumbar puncture to rule out certain infectious diseases.

Praying for a smooth night!

Progress Report..

I thought it about time I did a little update as to where we are at so far..

We had a lovely relaxed week mostly last week, lots of getting out of bed with Dylan's chest drains on his little pull along trolley (Daddy brought him his own special Mickey Mouse one) which meant plenty of exploring! Dylan had a go in the push along cars, played in the playroom and did some craft activities too..

As we had him off oxygen at points and he maintained his O2 sats so the decision was made to do a sleep study (even though he still had two chest drains in) on Thursday night. This was slightly different from usual as it was brand new equipment, very exciting..

This however did not happen as smoothly as it should have as poor Dylan spent most of the night being sick! They couldn't get his Hickman Line to give them any blood to test so he ended up having a Cannula put in. His temperature and heart rate were both elevated so they started him on antibiotics whilst waiting blood cultures which take 48 hours, these came back all clear. They also put some medicine in his line to see if they could get it to start working which they did.

Now, he wasn't the first person on the ward to get sick, and he wasn't the last either! Saturday night / early hours of Sunday morning it was my turn which was not what I needed!! I know they can't control what people's visitors might unknowingly bring in, but it took them a LONG time to admit it was contagious and do anything about it. So because of all this I had to stay away for 48 hours which was so hard..

It did mean however, I got some extra one to one time with Bryce and helped him with his Easter bonnet ready for his school disco on Friday..

Bryce also had his own appointment at the QMC on Monday just to double check his lungs were fine. We went to see one of Dylan's consultants Dr Bhatt and then he had an X-ray done to give him the all clear! Dylan's condition is so rare it was highly unlikely that Bryce would have the same issues but it was nice to be able to draw a line under that worry as before Dylan's diagnosis we were worried about different genetic problems. 

Dylan also got his Beads of Courage today, these represent his procedures, chemotherapy, X-rays, transfers to ICU, medications etc. He has so many already and they only start from the date his biopsies were taken (21st January) so I hate to think how many more he may have had!!

He loves them and is so proud of them already. It is a wonderful idea and helps give a visual of the journey he is undergoing..

Although we soon realised he is actually missing 32 beads from his steroids and 1 from the biopsy so looks like I shall have to request them and add them in the correct places!!

"At Least It's Not Cancer.."

This seems to be a reacurring statement that Histio mum's and patients face when describing the disease as 'Cancer like'...

The difference being that Cancer is caused by mature cells whereas Histio is caused by immature cells.. and that's where the difference stops! And if you test positive for the Braf gene mutation (which they are testing Dylan for) then it does actually get classed as Cancer anyway. Some say it's also because the lessions are benign but that is neither here nor there, especially as sometimes they aren't even removable such as tumours would be!

In fact in some countries (the UK included) Histiocytosis is now being classified as a rare type of Cancer and falls under the care of Cancer Research, Macmillan and Clic Sargent.

Histiocytosis causes organ problems, tumours, skin problems, bone problems, lessions and many, many other problems.. a lot of these are long term issues and do not go away with chemotherapy. Histio can wreck the body leaving it's damage long after the disease is treated, many patients go on to have organ transplants, it can effect brain development and cause a serious form of diabetes. There is always the chance of it coming back and attacking other parts of the body like with Cancer. There is no cure and very little information or funding because it is so rare..

So tell me again why "at least it's not Cancer"?

It is, it's just rare!! Besides, one is not worse than the other, it is not a comparison! Why do we need to compare our heartache over these awful diseases! Whilst some can be cured and some can be treated the effects they have are long term, distressing and often devastating on patients, families and friends so let's stop comparing our illnesses and just support each other?

Mothers Day

This Mothers Day remember and spare a thought for the mums spending it alone for whatever reason, maybe their children are with their father for the day, maybe they have to work all day to provide for them, maybe they are sick..

The mums who have lost a child, they will probably be grieving a lot on this day in particular, no matter how recent or long ago their loss might have been and my heart truely goes out to them so much as this was very nearly me this year..

The mums with no child to call their own, they may be struggling with infertility, they may have lost a baby or child, they may just be carrying their first baby.. None of this means they aren't a mother in their hearts and that they don't long for a little voice calling 'Mum' especially today.

The mums who've spent sleepless nights in hospital beds and chairs either unwell or caring for unwell family. They will feel drained, they might feel unwashed, they might not have eaten in hours and just be desperate for a 5 minute shower or a hot cup of tea! (This is the category I fall in to this morning, I've barely slept and not eaten since yesterday lunchtime and a shower would be a luxury right now!)

The children without mums, when all their friends are making Mothers Day cards at school it makes this particularly hard at this time of year. Those who never knew their mums and don't have any memories to look back on today. Those grieving for their mums, they may have lost them recently or many years ago, it doesn't matter, it never heals..

The single mums that do the job of mum and dad, especially if their little ones are too young to make them a card or gift, as they probably feel lonely, unappreciated and miserable today. If you know a mum like this in your life please just send them a text or anything to wish them a nice day.

The step mums taking on the responsiblity of mum, sometimes for the first time, sometimes full time, sometimes part time. They may feel like the 'bad guy' or they may be struggling to build a relationship and getting to know their new family.

The foster mums whom may only have children in their life for brief periods at a time and may have an empty house and heart this Mothers Day.

The adoptive mums who did not carry their child in their tummy, but rather their heart. Those whose adopted children have grown up and sought out their birth parents, I hope they don't forget about the parents who raised them today.

The dads who also fill the role of mum for whatever reason, full time or part time. They may not get appreciated at all today.. but guys you do an amazing job! Too many dads get a bad reputation when their are some fantastic ones out there that deserve credit. (I'm looking at you here Hubby) 

The grandparents raising their grandchildren. The aunties, uncles, sisters, brothers that all help out raising children whom no longer have their parents around or are needing extra support during tough times.

But most of all, have a wonderful day, hopefully spending it with people you love and remember that the greatest gifts are not 'things' but more moments and memories to cherish <3

Feeling Defeated

Yesterday the last remaining chest drain on the left was removed at lunch time. I was ecstatic to get it out and let Dylan play, and was excited that it had only taken 3 weeks to get to the point where it was safe for him to have none in as we previously anticipated months with them in. I told myself that even an hour without any in was a victory as we know a new cyst could burst at any point! He even got moved back around to the Oncology ward..

He lasted 16 hours before his breathing was a concern and an X-ray showed a new pnemothorax on the right hand side. Now the right hand side hasn't had any chest drains in since they "fell out" Tuesday night / Wednesday morning and he has been closely monitored since so this probably occurred overnight last night. The left side then followed suit and went again this afternoon..

So chest drain number 12 (I think) was put in the right hand side this morning by 11.45am and number 13 by 4pm and I can't help to feel a little bit defeated. It was so nice to be able to get Dylan out of bed, let him walk around, play and even use the potty without assistance. I know these are inevitable for now and that he needs them, but it's depressing. Hopefully it will eventually slow down in a few more weeks or months, but at the moment it's no quality of life for a 2 year old that should be off exploring to be stuck in a bed 24/7, I just feel so sorry for him!! Luckily he has been treated to LOTS of DVDs and activities he can do from in the hospital bed and hopefully Mummy and Daddy (and big Brother) cuddles help. And all this treatment and the chest drains are laying the foundations for him to hopefully be able to have a relatively normal life someday..

Whilst all this was going on I was actually at a Mothers Day lunch and craft session at Bryce's school so Daddy had to be in charge today! It was nice to spend some quality time with Bryce though and I just got back in time for a special delivery for Dylan..

This is Olly The Brave.. he is a special lion with a Hickman Line (just like Dylan) and a removable mane, and he comes with his own special story! This was given to Dylan by a charity called Molly Olly's Wishes set up by a family who sadly lost their daughter to Cancer, but wanted to help other children cope with their treatments and hair loss associated with chemotherapy. This charity also helps grants wishes to poorly children and the work they do is amazing! You can find their website at www.mollyolly.co.uk

Dylan is in a lot of discomfort from the new chest drains tonight but he still found time to do some puzzles...