When you have a child with Leukaemia, once you've got past the initial shock and terror, you come to expect the ups and downs that it brings. You're prepared for them to become ill and you're made aware of the potentially damaging side effects of the treatment.
What you don't expect is to give your child a widely used medication for acid reflux which leaves him barely conscious. Which is what happened in our house yesterday when I gave Matthew a new medicine.
I am very grateful to my neighbour who whisked Abi and Thomas to school as Matthew deteriorated so quickly they would have been badly frightened. My best friend appeared as if by magic, whilst I was calling for an ambulance. I'm normally extremely calm in a crisis but I could hardly get my words out to the operator, it was terrifying and she stayed with Matthew trying to keep him awake until the main ambulance crew arrived.
I later realised that the first responder, whose purpose is to get to the scene first, turned up last. At least twenty minutes after the ambulance car and a good ten after the ambulance. the only slightly amusing thing in the whole day.
The drug I gave him, having suggested it to our Clic nurse, is one I use myself and his sister was on for years. Fast acting and easy to take. Within an hour he said he felt unwell, within two hours he was only responding to pain stimulus. When he could be roused he was agitated and confused. Initially, the Drs discounted a drug reaction and after a few hours moved their focus to more scary things. Stroke, Meningitis and encephalitis, my fear was the Leukaemia back, or worse was there something growing that shouldn't be. There was talk of transferring him up to our childrens hospital in Bristol, but after liasing with them they firmed a plan. At this point they decided to put him through the MRI scanner. A massive machine, that is so incredibly loud I had to wear ear defenders to stay with him. The vibration made me feel physically ill. However, Matthew didn't even stir and others assumed he'd been sedated.
Waiting for the results was awful, but thankfully didn't take too long. They were clear of nasties which left a decision to be made about giving him a lumber puncture then or wait until the next day. His Dr is very measured in her actions and chose to wait, for that I am grateful, as she knew he'd fight them in agitation.
Friday arrived and with it a small boy who had no recollection of anything after getting into the ambulance until he finally woke for a couple of hours at 7pm. Waking hungry to find he was Nil by mouth wasn't the best news for him but I was more worried about him having a general anaesthetic and what they might find in his spinal fluid. But he woke after the anaesthetic like they said he would, and the best news was that it was clear of infection and Leukaemia.
Saturday morning came and he's back to his old self, his Dr is now absolutely convinced he's had a very very rare reaction to the drug. That's two serious drug reactions in five months and two too many. I'm very glad he can't remember anything, particularly how he scared the pants off us all!!
Friday 27 April 2012
Monday 23 April 2012
365 days
Exactly two years and two months ago today I took Matthew to Musgrove Park Hospital in Taunton, he'd had a very high fever for a couple of days, but apart from looking a bit pale I wasn't concerned. We were expecting to have a blood test and then come home. As it happened, I had asked my Mum and Dad to come and look after Abi and Thomas as I didn't want to cart them to the hospital for what could be a few hours of waiting around. Having been completely unprepared, I missed the concerned looks being exchanged between Drs, its very clear in retrospect now. We'd only been on the ward a few minutes and after Matthews first examination by a junior Doctor, he came back with a senior Doctor. They did not say a word to me to frighten me, other than they could not rule out a form of meningitis, but were very reassuring. I popped home to get some clothes and the rest, as they say, is history.
Two years and two months later, I consider some of the ward staff my friends and I am on first name terms with the consultants. I spend a lot of time carting Abi and Thomas to the hospital for hours of waiting around and know the hospital as well as my own home.
He has been through so much in the last two years, more than many adults endure in a lifetime. Recently, many people have made the comment only another year, the ends in sight, it will be easy now. For Matthew, and for me, its actually quite the opposite. The Leukaemia road is a long one, and we are two thirds through it, but this little boy has lost two years of normality, being able to join in all of the games his friends can, not being able to play on the apparatus at school, missing out on some favourite foods and more recently it appears he is becoming insulin resistent when on steroids, which means excluding treats for the 6 days each month he feels like hell. Each month of treatment is seeming to take more out of him, more pain, more nausea. For him, knowing there is another 12 months ahead is like a life sentance.
For me, its a worry, not that I'd ever tell him that. I worry that he is not tolerating treatment so well. Each month he seems to struggle more, physically and emotionally. He has not been properly well since December 2011 before he had shingles, renal failure was a side effect of that treatment, yet another kicking his body took. His bone marrow is getting tired, and I've been told it is more likely that they become ill in the third year. The Dr's have all seen this before, to them its routine. To us its not and somehow he needs to have the strength to get through the next year and come out as unscathed as possible at the other end.
365 days could be a very long time but with our little milestones on the way we will get there.
Two years and two months later, I consider some of the ward staff my friends and I am on first name terms with the consultants. I spend a lot of time carting Abi and Thomas to the hospital for hours of waiting around and know the hospital as well as my own home.
 |
| One week after diagnosis |
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| Five weeks later |
 |
| 6 months later 2010 |
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| October 2011 |
He has been through so much in the last two years, more than many adults endure in a lifetime. Recently, many people have made the comment only another year, the ends in sight, it will be easy now. For Matthew, and for me, its actually quite the opposite. The Leukaemia road is a long one, and we are two thirds through it, but this little boy has lost two years of normality, being able to join in all of the games his friends can, not being able to play on the apparatus at school, missing out on some favourite foods and more recently it appears he is becoming insulin resistent when on steroids, which means excluding treats for the 6 days each month he feels like hell. Each month of treatment is seeming to take more out of him, more pain, more nausea. For him, knowing there is another 12 months ahead is like a life sentance.
For me, its a worry, not that I'd ever tell him that. I worry that he is not tolerating treatment so well. Each month he seems to struggle more, physically and emotionally. He has not been properly well since December 2011 before he had shingles, renal failure was a side effect of that treatment, yet another kicking his body took. His bone marrow is getting tired, and I've been told it is more likely that they become ill in the third year. The Dr's have all seen this before, to them its routine. To us its not and somehow he needs to have the strength to get through the next year and come out as unscathed as possible at the other end.
365 days could be a very long time but with our little milestones on the way we will get there.
Monday 9 April 2012
Roller coaster riding really isn't for me!
Have you ever been on a ride that you hated and screamed "Stop, I want to get off?" Lifes been a little like that over the past few weeks.
I always find it funny, in an obscure way, that when you go to see a health professional, and I have seen far too many over the last few months (to the point that random Dr's wave hello at our local hospital), they want to hear something positive. But is it for them, so they don't go home each day feeling truly depressed? Or to simply encourage us to try and see the positive in what sometimes seems an overwhelming number of negatives? But just how do we keep clinging to those positives, especially at times when they are far outweighed by so so many negatives?
The truth for me is, that if I don't it would be so easy to simply give up. Give up trying to fight what seems like a continually losing battle to get some support for Abigail, and ultimately for us all. I cling to the fact that underneath the anger, animosity and aggression I know that there is a lovely, loving little girl who is incredibly gifted trying to work out this confusing world. I need to keep fighting for her to give her the opportunity to be the best that she can be, but I have to do this whilst still learning to accept that she is different, she will always react to situations in a different way, she will always behave in a different way. At the moment I don't understand why and I feel that I am letting her down because I can't support her properly.
Of course the effects of Abi's behaviour don't just affect me, they are far reaching. Abi and Thomas both have sensory disorders, just one problem, they are not the same, they are polar opposites. That makes life challenging enough, but then throw an immune suppressed and physically fragile child into the mix and it becomes a whole different ball game. Someone said to me a couple of weeks ago that Abi was actually more concerning than Matthews current fragile emotional and physical state, I found this a little insensitive given the circumstances, but I also know its the truth.
So what am I going to do?
Truth is at the moment so many things are running through my head, some constructive, some not, such is my frustration. All the right professionals are involved, so thats positive, but unfortunately we're not all singing from the same hymn sheet. I don't want my daughter to have a "label" but I fear without one she will not get the help and support that she desperately needs in order to function properly. I fear for her future and what it may hold.
Therein lies my answer. I have a "multi-agency" meeting coming up in a couple of weeks to discuss "the best way forward". I am annoyed at how it has come about, and I am annoyed about how it has been arranged without any deference or respect to me as her Mum, but the fact remains this will be the best way forward. I need to take these couple of weeks to turn my anger and frustration into determination to succeed for her. Glimpses of the beautiful child within are simply not enough.
I always find it funny, in an obscure way, that when you go to see a health professional, and I have seen far too many over the last few months (to the point that random Dr's wave hello at our local hospital), they want to hear something positive. But is it for them, so they don't go home each day feeling truly depressed? Or to simply encourage us to try and see the positive in what sometimes seems an overwhelming number of negatives? But just how do we keep clinging to those positives, especially at times when they are far outweighed by so so many negatives?
The truth for me is, that if I don't it would be so easy to simply give up. Give up trying to fight what seems like a continually losing battle to get some support for Abigail, and ultimately for us all. I cling to the fact that underneath the anger, animosity and aggression I know that there is a lovely, loving little girl who is incredibly gifted trying to work out this confusing world. I need to keep fighting for her to give her the opportunity to be the best that she can be, but I have to do this whilst still learning to accept that she is different, she will always react to situations in a different way, she will always behave in a different way. At the moment I don't understand why and I feel that I am letting her down because I can't support her properly.
Of course the effects of Abi's behaviour don't just affect me, they are far reaching. Abi and Thomas both have sensory disorders, just one problem, they are not the same, they are polar opposites. That makes life challenging enough, but then throw an immune suppressed and physically fragile child into the mix and it becomes a whole different ball game. Someone said to me a couple of weeks ago that Abi was actually more concerning than Matthews current fragile emotional and physical state, I found this a little insensitive given the circumstances, but I also know its the truth.
So what am I going to do?
Truth is at the moment so many things are running through my head, some constructive, some not, such is my frustration. All the right professionals are involved, so thats positive, but unfortunately we're not all singing from the same hymn sheet. I don't want my daughter to have a "label" but I fear without one she will not get the help and support that she desperately needs in order to function properly. I fear for her future and what it may hold.
Therein lies my answer. I have a "multi-agency" meeting coming up in a couple of weeks to discuss "the best way forward". I am annoyed at how it has come about, and I am annoyed about how it has been arranged without any deference or respect to me as her Mum, but the fact remains this will be the best way forward. I need to take these couple of weeks to turn my anger and frustration into determination to succeed for her. Glimpses of the beautiful child within are simply not enough.
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