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