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!!
Monday 29 May 2017
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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