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!
Thursday, 8 June 2017
Wednesday, 7 June 2017
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
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
Friday, 2 June 2017
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
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
Monday, 29 May 2017
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!!
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!!
Monday, 22 May 2017
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
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
Friday, 19 May 2017
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.
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.
Thursday, 4 May 2017
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!🎗💙
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!🎗💙
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