The Moment of Truth

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

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

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

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

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

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

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

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

Temperature Spikes

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

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

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

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

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

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

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

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

Readmission

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

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

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

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

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

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

Sickness & Fever

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

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

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

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

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

Sleep Study 2.0 & Nursery Visit

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

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

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

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

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

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

And Baby Makes Three (Boys)..

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

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

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

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

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

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

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

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

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

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

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

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

"You're Crazy!"

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

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

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

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

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