The news that shatters your world ...
As a young child, Ashton had been fairly prone to nose bleeds, never really bad ones, but reasonably frequent. I put off going to the docs because I didn't love the idea of him having his nose cauterized. Then, when Ashton was attending nursery, he went through a spate of being unwell, nothing major, just repeated 24 hour things that usually gave him a temperature and a bit lethargic, but would go as soon as it came, which I put down to jut being in nursery and picking up the other kids' germs. Around this time, we also noticed Ashton had quite a lot of bruises, mainly on his legs. His Dad commented on them first, as I put them down to him being a boy and the rough and tumble of nursery life! I raised it with his nursery and they were unaware of any specific causes / falls etc. Then one particular day, Ashton had a HUGE bruise on his elbow, which he MUST have remembered getting, as surely it would've hurt to receive a bruise that size! Again, he had no recollection of any bump or bash and nor did the nursery staff...now I was beginning to worry..
I made an appointment at our GP and coincidently the night before, Ashton had a an earache, so I went to the appointment on the Friday with a bit of a list I wanted to discuss, i.e. nosebleeds, bruises, earache! The GP told me she wasn't unduly worried, but decided to send Ashton for a blood test, which if it didn't reveal anything, we would just monitor things. The blood test was the following Wednesday morning, which we had done and we were advised results would be back probably on the Friday. So, I was not expecting a call from our GP on Wednesday afternoon...Straight away she asked if anyone was with me, if I was sitting down, I had no idea that the very next sentence would change our lives forever, when she said that they suspected Ashton had leukaemia and that we needed to go to our local hospital immediately...I ran up to Martin & literally through the phone at him, sobbing. I then ran back downstairs and hugged Ashton for all I was worth - he was a little surprised to say the least! Martin, having spoken to the doctor quickly came downstairs and told me I needed to be strong for Ashton, so as not to frighten him and almost like a switch I managed to pull myself together - amazing the strength you can find when your child is involved.
We headed straight to the hospital, where a nurse was waiting to take us to the ward. There began a nightmare for us all...they needed to take blood from Ashton, which meant inserting a canula into his hand, but he was terrified and it hurt him, so it was a massive struggle and unfortunately the first doctor we saw wasn't very sympathetic to the fact he was only just 4 years old and didn't want to co-operate with something that hurt him. Ashton was in sheer terror and was crying and begging me to make them stop, it simply tore mine and Martin's hearts apart. In the end, we had to have Ashton sedated to enable them to do the procedure.
During these first few days we were told some basic information, mostly surrounding his blood counts, which were massively low and we started hearing words like "platelets", "Neutofills" and other blood and medical related terms we had never heard of. We were told Ashton would have a lumbar puncture which would confirm for sure whether he had leukaemia or not, although they didn't seem to be in any doubt.
We stayed at our local hospital for 2 nights and were then transferred to the Royal Marsden, in Sutton, by ambulance. And here a whole new world was exposed to us. The Marsden is a specialist cancer hospital, where they deal with different types of cancer all day, every day. It was very reassuring to be in such specific care. We saw a consultant almost immediately who explained in a lot of detail what leukaemia was and what treatment Ashton would require. It was simply mind-blowing. I couldn't comprehend that they were talking about our son...even today, it's so hard to connect the words Ashton and cancer together - they just shouldn't be anywhere near each other.
Ashton's chemotherapy started immediately and the following day Ashton had a porthacath fitted in his chest, to make the administration of chemo & taking bloods etc much easier than via a canula. Or that was the idea... it meant Ashton had to have a "wiggly" inserted through his chest, via a needle, which was then kept in place with a large plaster. Putting the wiggly in was a sheer nightmare for Ashton, as was removing it, which was required at a minimum of once a week. Ashton would by hysterical any time a nurse came near him....likewise, any oral medicines were so hard to give him, he just refused them and we had to resort to forcing them in his mouth while he cried and screamed.... doing this to your child is just horrendous, no matter how much you tell yourself it is for their own good.
We stayed at the Marsden for about 2 weeks and were then able to come home, which was pretty terrifying in itself. To be responsible for giving him all the various medicines at the right times, in the right order, for the right doses was mind blowing!
Amazingly we soon got into a routine and we had visits from our community nursery every week, or more frequently, as required to give certain chemo or to take bloods.
To begin with, I didn't want to see anyone or talk to people - saying it out loud just made it real and I didn't want it to be real. But, we had so much love and support from friends and family, they can't possibly know what a difference they all made in the beginning, I don't think I would've managed otherwise.
Ashton was really unwell in the beginning for quite a lengthy period, where he was very subdued, didn't want to talk much, or really do anything at all. It was so hard seeing him like that and we tried everything to get a smile or some kind of reaction, but a lot of the time it didn't work. Our little boy had had his life turned upside down, for reasons he didn't understand and was feeling simply horrible. We explained very basically that, he had baddies in his blood, that he needed to have special medicine for and that it would take a long time for them to go away. Also, that a super hero called Capain Chemo was going to help get him better with his strong powers, he would fight the baddies. In fact, he was SO strong, his muscles were going to blow his hair away....another heartbreaking fact we had to tell our by & then watch as gradually his hair fell out & his body bloated out from the steroids he had to take...Ashton just didn't look like our happy little boy anymore, but it just made us all the more determined to fight with him and for him, every step of the way.
For the first 9 months, Ashton had different blocks of treatment, most of which were pretty intense, with horrible side effects. Some affect his legs, which means his legs are very stiff and at first, Aston stopped walking altogether because it was too painful. Gladly, that didn't last, but he does still have periods where he cant walk long distances or he struggles with stairs and bending down etc. Other treatments have made him very sick, given him pain throughout his body and made him very lethargic.
At no time has Ashton complained or asked "why him", he has just dealt with things in his own way. I have wondered at times what he thinks about what is happening to him and we try to tell him things, like when he has procedures coming up. Slowly he has accepted things and is now such a star about having his wiggly put in & out, although we can see it hurts and he gets nervous, he just does it,himself now. Likewise with his medicines, where once it would take 2 hours to get him to take something, now he just drinks it and tells me it's "yucky!"
Ashton reached maintenance treatment in mid February, which means he is now on a rolling cycle of repeat blocks of treatment. This still involves quite a lot of medication, but because it continues to repeat, we know what to expect and can plan around the times when we know Ashton is likely to be feeling unwell. Obviously that we can't know about other illnesses he might get - because he is immune-suppressed he is very susceptible to picking up bugs and we have to be very careful if he develops a temperature to get him to the hospital so they can treat him quickly.
We have adapted to this way of life, where we manage Ashton's illness and fit it around everything else it doesn't rule our lives, but we DO have to be mindful of what we do and where we go. Ashton still has another 2 years of treatment to go, so still quite a long way to go and whilst, just over a year ago, we could never imagine ourselves in this position, we have dealt with it in the only way we could - by loving & supporting our son and just getting on with it.
Ashton is such a brave little boy, who has faced this horrible illness with such courage and taken it totally in his stride. He has amazed us and made us so very proud. For all that he has and continues to endure, he is a very happy boy, who makes the most of things and brings love and delight into his whole family's lives. WE love him so much and am with him each and every step of his journey. ...... written from the heart by Ashton's mum Michelle
I made an appointment at our GP and coincidently the night before, Ashton had a an earache, so I went to the appointment on the Friday with a bit of a list I wanted to discuss, i.e. nosebleeds, bruises, earache! The GP told me she wasn't unduly worried, but decided to send Ashton for a blood test, which if it didn't reveal anything, we would just monitor things. The blood test was the following Wednesday morning, which we had done and we were advised results would be back probably on the Friday. So, I was not expecting a call from our GP on Wednesday afternoon...Straight away she asked if anyone was with me, if I was sitting down, I had no idea that the very next sentence would change our lives forever, when she said that they suspected Ashton had leukaemia and that we needed to go to our local hospital immediately...I ran up to Martin & literally through the phone at him, sobbing. I then ran back downstairs and hugged Ashton for all I was worth - he was a little surprised to say the least! Martin, having spoken to the doctor quickly came downstairs and told me I needed to be strong for Ashton, so as not to frighten him and almost like a switch I managed to pull myself together - amazing the strength you can find when your child is involved.
We headed straight to the hospital, where a nurse was waiting to take us to the ward. There began a nightmare for us all...they needed to take blood from Ashton, which meant inserting a canula into his hand, but he was terrified and it hurt him, so it was a massive struggle and unfortunately the first doctor we saw wasn't very sympathetic to the fact he was only just 4 years old and didn't want to co-operate with something that hurt him. Ashton was in sheer terror and was crying and begging me to make them stop, it simply tore mine and Martin's hearts apart. In the end, we had to have Ashton sedated to enable them to do the procedure.
During these first few days we were told some basic information, mostly surrounding his blood counts, which were massively low and we started hearing words like "platelets", "Neutofills" and other blood and medical related terms we had never heard of. We were told Ashton would have a lumbar puncture which would confirm for sure whether he had leukaemia or not, although they didn't seem to be in any doubt.
We stayed at our local hospital for 2 nights and were then transferred to the Royal Marsden, in Sutton, by ambulance. And here a whole new world was exposed to us. The Marsden is a specialist cancer hospital, where they deal with different types of cancer all day, every day. It was very reassuring to be in such specific care. We saw a consultant almost immediately who explained in a lot of detail what leukaemia was and what treatment Ashton would require. It was simply mind-blowing. I couldn't comprehend that they were talking about our son...even today, it's so hard to connect the words Ashton and cancer together - they just shouldn't be anywhere near each other.
Ashton's chemotherapy started immediately and the following day Ashton had a porthacath fitted in his chest, to make the administration of chemo & taking bloods etc much easier than via a canula. Or that was the idea... it meant Ashton had to have a "wiggly" inserted through his chest, via a needle, which was then kept in place with a large plaster. Putting the wiggly in was a sheer nightmare for Ashton, as was removing it, which was required at a minimum of once a week. Ashton would by hysterical any time a nurse came near him....likewise, any oral medicines were so hard to give him, he just refused them and we had to resort to forcing them in his mouth while he cried and screamed.... doing this to your child is just horrendous, no matter how much you tell yourself it is for their own good.
We stayed at the Marsden for about 2 weeks and were then able to come home, which was pretty terrifying in itself. To be responsible for giving him all the various medicines at the right times, in the right order, for the right doses was mind blowing!
Amazingly we soon got into a routine and we had visits from our community nursery every week, or more frequently, as required to give certain chemo or to take bloods.
To begin with, I didn't want to see anyone or talk to people - saying it out loud just made it real and I didn't want it to be real. But, we had so much love and support from friends and family, they can't possibly know what a difference they all made in the beginning, I don't think I would've managed otherwise.
Ashton was really unwell in the beginning for quite a lengthy period, where he was very subdued, didn't want to talk much, or really do anything at all. It was so hard seeing him like that and we tried everything to get a smile or some kind of reaction, but a lot of the time it didn't work. Our little boy had had his life turned upside down, for reasons he didn't understand and was feeling simply horrible. We explained very basically that, he had baddies in his blood, that he needed to have special medicine for and that it would take a long time for them to go away. Also, that a super hero called Capain Chemo was going to help get him better with his strong powers, he would fight the baddies. In fact, he was SO strong, his muscles were going to blow his hair away....another heartbreaking fact we had to tell our by & then watch as gradually his hair fell out & his body bloated out from the steroids he had to take...Ashton just didn't look like our happy little boy anymore, but it just made us all the more determined to fight with him and for him, every step of the way.
For the first 9 months, Ashton had different blocks of treatment, most of which were pretty intense, with horrible side effects. Some affect his legs, which means his legs are very stiff and at first, Aston stopped walking altogether because it was too painful. Gladly, that didn't last, but he does still have periods where he cant walk long distances or he struggles with stairs and bending down etc. Other treatments have made him very sick, given him pain throughout his body and made him very lethargic.
At no time has Ashton complained or asked "why him", he has just dealt with things in his own way. I have wondered at times what he thinks about what is happening to him and we try to tell him things, like when he has procedures coming up. Slowly he has accepted things and is now such a star about having his wiggly put in & out, although we can see it hurts and he gets nervous, he just does it,himself now. Likewise with his medicines, where once it would take 2 hours to get him to take something, now he just drinks it and tells me it's "yucky!"
Ashton reached maintenance treatment in mid February, which means he is now on a rolling cycle of repeat blocks of treatment. This still involves quite a lot of medication, but because it continues to repeat, we know what to expect and can plan around the times when we know Ashton is likely to be feeling unwell. Obviously that we can't know about other illnesses he might get - because he is immune-suppressed he is very susceptible to picking up bugs and we have to be very careful if he develops a temperature to get him to the hospital so they can treat him quickly.
We have adapted to this way of life, where we manage Ashton's illness and fit it around everything else it doesn't rule our lives, but we DO have to be mindful of what we do and where we go. Ashton still has another 2 years of treatment to go, so still quite a long way to go and whilst, just over a year ago, we could never imagine ourselves in this position, we have dealt with it in the only way we could - by loving & supporting our son and just getting on with it.
Ashton is such a brave little boy, who has faced this horrible illness with such courage and taken it totally in his stride. He has amazed us and made us so very proud. For all that he has and continues to endure, he is a very happy boy, who makes the most of things and brings love and delight into his whole family's lives. WE love him so much and am with him each and every step of his journey. ...... written from the heart by Ashton's mum Michelle
