Head Shave
Siobhan O'Flynn is raising money for LATCH Welsh Children's Cancer Charity
Story
Thanks for taking the time to visit my JustGiving page.
13.07.17 Update
So, today Dylan started his maintenance treatment plan. This is a big milestone after the last 7 months of intense chemotherapy & protocol hopping.
It is also the start of what we hope will be a slightly more settled routine.
Dylan's cancer is rare & as such his maintenance plan is fairly intensive.
As you can see from the picture, he's come a long way since his diagnosis for
B-cell lymphoblastic lymphoma in December 2016 but still has a very long way to go.
His maintenance will continue until March/April 2020...almost 3 years.
Until that endpoint Dylan will have to take oral chemotherapy in the form of 8 tablets everyday, he will have another chemotherapy tablet once a week, he will have steroids for 5 days in every month, he will have intravenous chemotherapy once a month, a lumbar puncture which will involve intrathecal chemotherapy once every 12 weeks, weekly blood tests, regular cardiovascular tests, physiotherapy to improve his gait & he will also need to have an operation to remove his Hickman line in order to replace it with a port which will be placed under the skin on his chest so that the nurses can administer the intravenous treatment.
There is now no way of telling whether his cancer has gone completely so whilst we are delighted that he has made it to the maintenance stage, we are still on a tightrope.
His blood count is likely to remain low & he will continue to be susceptible to illness & infection. Soon he will finally be allowed to return to school but will obviously still miss days when he needs chemotherapy in hospital, if he is ill or if his blood count is too low.
I know that as a family we will soon fall into a pattern & we will deal with what comes our way as & when it does. We will be able to do "normal" things on a more regular basis & we are really looking forward to watching Dylan reintegrate properly into a more normal life with friends & family.
Our anxiety will never go away but it will abate slightly with time & as we all know, time is precious.
#stilldaunting #standuptocancer 👊
22.06.17 update:
Six months in...& we're nearing maintenance ✌️
Six months ago today Dylan was diagnosed with B-cell lymphoblastic lymphoma & the truth is, the last 6 months have been beyond any description of horror that I can find words for.
When you're the type of person who thrives on routine, familiarity & a comprehensible amount of certainty, cancer comes along & forces you to live in the polar opposite zone. It makes you face everything upside down. You don't know what each hour will bring.
I normally process really difficult things on my own, but this time I couldn't because cancer doesn't give you time to process; its ugly aggression makes you wait out every hour of every day...relentlessly.
The uncertainty is tinged with tiny moments of hope surrounded by huge chasms of fear.
The more time goes on the more I learn about this dreadful disease. All of its various guises & mutations, all of its seriousness & it's near misses. The reality is that we very nearly ran out of time but fate thus far has not let that happen. There aren't the words to explain my relief on that one aspect alone.
It's so surreal. Even now, 6 months in I still think someone's going to tell me that they've made a mistake; that I'm going to wake up & it's all just been a really horrific nightmare, but I know that won't happen. I wake up well before the birds every morning & the first thing that pops into my mind is cancer. I start my day contemplating cancer & I end my day contemplating cancer & in between those two points I basically think about cancer. There is nowhere to go, there is no escape & there is absolutely zero let up. We have no routines & even the medical routines (of which there have been too many to remember) are spurious given that we never know how Dylan will be on any given day. Something as simple as losing a tooth meant he was hospitalised because his gums wouldn't stop bleeding so he ended up having a platelets transfusion because he had no immune system & his blood couldn't clot. The side effects of all the drugs have been unbearable for us to watch & moreover for him to endure.
Telling people who don't know that Dylan is ill has been the hardest...having to see the despair on their faces is so unbearably difficult. I have stood in front of people having broken the awful news to them, whilst they on occasion would understandably start crying I would be smiling & trying to pull some positive message of hope from my numb mind. Even now, I still try to make people feel better when they ask how Dylan is by using upbeat language & putting an efficacious spin on things. The truth is it would be a total understatement to say that it's been really bloody shit every single bloody day.
I find that I am constantly pushing away the dark & trying to see the light.
I feel as though I have been preparing for life at the same time as preparing for the possibility of death.
I probably prepared harder for death because I know that would be much harder to deal with. At times I have been 60/40 either way having watched some really low points whilst we have been going through this journey. Like the time when Dylan's oxygen levels dropped to 80%. When as a last resort they called in a consultant cardiologist from his home one evening because they couldn't work out why his oxygen levels were dropping. When they wheeled in the portable X-ray machine to check his chest was ok. When they called in a physiotherapist to help him breathe properly. When there were what seemed like all the doctors in the hospital surrounding his bed trying to figure out the next move. When he didn't eat for days. When he couldn't bend down or get back up. When he couldn't climb into bed or get up or down the stairs. When his mouth was so full of ulcers that he couldn't even smile & had to be put on hydration & morphine because he couldn't ingest anything due to the pain. When we were fearful that the ulcers in his mouth would cause his intestinal tract to become infected. When he was neutropenic. When he lost control of his bowels. When he started vomiting at 2 in the morning & we had to rush him into hospital where he ended up staying for days. When he needed blood transfusions & platelets transfusions. When we watched his tiny body slide into the CT & MRI scanners, not knowing what on earth they would reveal. When I watched the faces of my medical friends read the results of that first MRI scan. When he had two general anaesthetics in 3 days for a biopsy, a bone marrow aspiration & to have his Hickman line inserted through his neck in order for it to emerge from his chest so that they could start to administer the toxic combination of potentially life saving chemotherapy drugs. When we found out his tumours were really aggressive & were already on his spine (just missing his central nervous system); his ribs; his shoulder blades; the entirety of the left hand side of his head (not quite reaching his optical nerves) & fast approaching his kidneys. When the consultants told us that they couldn't believe he had kept going for so long.
I know a life tainted with the fear of death on a daily basis may well be harder to deal with so I err on the side of cautious optimism because the consultant right at the beginning of this torrid journey told us that they were "cautiously optimistic".
The thing is, cautious optimism is not the same as optimism & that right there is the tightrope.
He has had various periods of being on different doses of steroids. The effects of this medication alone is mind blowing in the extreme. A mild mannered, happy-go-lucky funny boy turns into an overly emotional violent antisocial hermit that eats the same thing on the hour every hour for weeks at a time. There is no conversation, there is no reasoning, there is just riding out the hell. It's like having a supercharged psycho three year old on acid with the appetite of a pack of hyenas & the manners of the world's most aggressive alley cats. I kid you not.
Coming off steroids is equally distressing. His body physically hurts for days after he stops having them but his appetite hangs around. He starts to behave more like a twelve year old girl who's just about to start her period & his physicality begins to resemble a pumpkin. He's all puffed up & round. You frequently make special trips to the supermarket at stupid o'clock in order to satiate his cravings. You bulk buy shit only to discover the next day he doesn't really like chicken drumsticks anymore so you go back the next day to buy burgers. You stop bulk buying having learnt that lesson so you visit the supermarket two to three times a day just to get whatever it is that he needs. There's no way you'd do that if everything was "normal", but everything is very far from "normal".
I have tried to anticipate his moods to see if he will engage in a variety of gentle activities. Entertaining a child who has no energy whilst you yourself don't have any physical or mental energy is a bit like going fishing with chopsticks...a novel concept that will never really take off. The boredom & the restraint is almost terminal. Some days I long for a visitor & some days I just want to lock the door, close the curtains & curl up in a ball. During the week I stay at home probably 90% of the time with Dylan as his immune system is generally low so he's easily susceptible to infections & illnesses. If his temperature goes the tiniest bit over or under a certain degree then he will be hospitalised, the same applies for pretty much any illness. He can't have treatment if his blood count isn't at a certain level, which means that treatment is delayed & the whole process is even more drawn out.
We have had some wonderful days where the things we once took for granted are almost worthy of celebration; a trip to the park, a trip into town for breakfast, an ice cream. We have to watch what he eats, there's a long list of foods that are banned.
At the weekend I make sure I get out; anywhere. I have a wonderful group of friends whom I have known for years, they know me inside out & they have been an incredible lifeline. In some cases just a mid week glass of wine & a chat has lifted me.
Each time one phase of treatment comes to an end & a new one starts I feel my body physically shaking with anxiety. I have knots in my stomach & I'm full of fear & anticipation as to what the next round will bring. Each phase of treatment has brought with it its own set of issues, not forgetting the main one, the actual cancer.
In between all of this is Ruari; 17 years old. One teacher has described Ruari as "probably one of the most sensitive boys" they'd ever met. From a very early age this boy has shown a highly mature level of empathy accompanied by a strength & resilience that would put a lot of adults to shame. We have tried to protect him from the really grim stuff, that alone is so difficult. He has been broken by this whole experience but has kept on going through all of it with a dignified strength & an unwavering level of support for his brother. Sometimes I forget how much it must be hurting him. Several times he has broken down, had sleepless nights & been lost for words. Through all of this he has started a new school, organised a charity head shave for Cancer Research raising in excess of £5K, played countless rugby matches, endured several injuries & sat his A/S levels. In all that time he has asked for nothing. He has grown up on one of the hardest learning curves & has taken it all in his stride. He has such beautiful qualities. I worry daily about him too.
All that said (& believe me there's plenty more), I know that I have been blessed with a heroic rock of a partner in Nick. He has been propping me up through all of this. Teamwork has taken on a whole different meaning.
We have had the unending love, support & understanding from Abi & Jamie who somehow manage to pick up on all the undercurrents & subtle nuances of how we might be feeling despite their distance from us. We have been completely blown away by the kindness & overwhelming generosity of our friends. The steady stream of cooked meals & thoughtful gifts has allowed us time to catch our breath.
Thus far, whilst this experience has been & remains to be completely & utterly horrific, it has also brought an undeniable amount of positives. I am humbled by the constant efforts of family & friends. I have been humbled by the unwavering efforts of the incredible medical staff on Dylan's hospital ward. The charities that help us cope with the mundane day to day stuff that we don't have time to do ourselves are quietly milling about in the background. Incredible support has come from all over the place.
Not only am I Dylan's mother but I have also become his carer & the two things are very different.
A lot of the time when you hear stories about raising really ill children it's often "they've saved me" and "they've made me a better person". That is all valid and true to a point. However, the range of emotions is rather more complicated. It's a never ending deluge of feelings and not all of them are good. There is fear, doubt, loneliness, jealousy, bitterness and also anger. There are moments when it weighs so heavily on you that you wonder if you would take the path you've been put upon if given the choice. There are moments when you insert humour where others might think it's bad taste. This aspect of caring is something that is rarely discussed openly because people don't often like to be confronted by the reality of human nature or by the reality of a situation to which there are no answers.
It's a never ending struggle, day in and day out.
On a plus point...I really like my new haircut
#whoknew #standuptocancer 👊
Original post:
Some of you will know already that my beautiful boy Dylan was sadly diagnosed with cancer just before Christmas.
On 16th December we had an appointment with a consultant at the hospital because he'd had a swollen cheek but nobody could really work out why. That very same day, he was admitted to the Children's Hospital for Wales & we were told it was highly likely that he had cancer.
On the 22nd December he was finally diagnosed with lymphoblastic lymphoma, a rare but treatable disease.
For that reason I am shaving my head on World Cancer Day (4th Feb 17) in order to raise money for Latch.
Latch is an amazing Welsh Children's Cancer Charity & genuinely has taken away a lot of the stress of everyday life.
The way they look after us & other families with very sick children is beyond wonderful & I would like to give something back & help support a charity that is fully supporting us.
Dylan's diagnosis was a complete shock for us all; Dylan had seemed so healthy & hadn't presented with any symptoms that would point to such a terrible illness.
He has had MRI scans that have lasted hours, CT scans, X-rays, a bone marrow aspiration, weekly lumbar punctures & a Hickman line inserted into his body through which he now receives a cocktail of toxic chemotherapy drugs to try to reduce the tumours which were on his spine, his ribs, his shoulder blades & in the left hand side of his head. He is responding well to treatment but he has started to lose his hair, he no longer has the strength to walk up & down the stairs or the strength to walk anywhere really.
We stayed in hospital for two weeks over the Christmas period & he was finally let home as an outpatient on New Year's Eve.
Whilst we were in hospital, I cannot begin to explain how wonderfully we were looked after...not just by the nurses, doctors & consultants but also by this incredible charity that basically supports the oncology ward.
Dylan's illness has opened up a whole new world to us.
The amount of stuff that goes on in the background in the world of childhood cancer is staggering & more significantly it is truly humbling.
For example, on Christmas Day, I opened the door of Dylan's hospital room to find an enormous bag of wrapped presents. Every child on the ward & their siblings each received bags full of lovely gifts all organised by Latch.
On Christmas Eve, Nick was able to stay in one of the Latch ensuite rooms above the oncology ward so that we could be together to open Dylan's stocking & presents early on Christmas morning. Other families also had ensuite rooms upstairs along with lounges equipped with TVs, game stations, books & toys. There is also a fully functional kitchen, a dining room, a laundry room & access to the Latch offices & their incredibly friendly staff.
Even now that Dylan is an outpatient, the support from Latch continues; they have provided us with a car park pass, a large Maclaren pushchair, help with forms, counselling should any of us need it...the list is endless, there is nothing that they haven't thought of.
Cancer is more than an illness, it doesn't just affect the person who is diagnosed with it.
It is an antibiosis where we, our families & our friends are all forced to live with this disease & it's side effects day in & day out. Some days cancer has the upper hand, other days we do.
It is a life changing disease that touches everyone involved & this is just part of what Latch helps us deal with on a daily basis.
I am standing up to cancer & I hope you will join me.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
13.07.17 Update
So, today Dylan started his maintenance treatment plan. This is a big milestone after the last 7 months of intense chemotherapy & protocol hopping.
It is also the start of what we hope will be a slightly more settled routine.
Dylan's cancer is rare & as such his maintenance plan is fairly intensive.
As you can see from the picture, he's come a long way since his diagnosis for
B-cell lymphoblastic lymphoma in December 2016 but still has a very long way to go.
His maintenance will continue until March/April 2020...almost 3 years.
Until that endpoint Dylan will have to take oral chemotherapy in the form of 8 tablets everyday, he will have another chemotherapy tablet once a week, he will have steroids for 5 days in every month, he will have intravenous chemotherapy once a month, a lumbar puncture which will involve intrathecal chemotherapy once every 12 weeks, weekly blood tests, regular cardiovascular tests, physiotherapy to improve his gait & he will also need to have an operation to remove his Hickman line in order to replace it with a port which will be placed under the skin on his chest so that the nurses can administer the intravenous treatment.
There is now no way of telling whether his cancer has gone completely so whilst we are delighted that he has made it to the maintenance stage, we are still on a tightrope.
His blood count is likely to remain low & he will continue to be susceptible to illness & infection. Soon he will finally be allowed to return to school but will obviously still miss days when he needs chemotherapy in hospital, if he is ill or if his blood count is too low.
I know that as a family we will soon fall into a pattern & we will deal with what comes our way as & when it does. We will be able to do "normal" things on a more regular basis & we are really looking forward to watching Dylan reintegrate properly into a more normal life with friends & family.
Our anxiety will never go away but it will abate slightly with time & as we all know, time is precious.
#stilldaunting #standuptocancer 👊
22.06.17 update:
Six months in...& we're nearing maintenance ✌️
Six months ago today Dylan was diagnosed with B-cell lymphoblastic lymphoma & the truth is, the last 6 months have been beyond any description of horror that I can find words for.
When you're the type of person who thrives on routine, familiarity & a comprehensible amount of certainty, cancer comes along & forces you to live in the polar opposite zone. It makes you face everything upside down. You don't know what each hour will bring.
I normally process really difficult things on my own, but this time I couldn't because cancer doesn't give you time to process; its ugly aggression makes you wait out every hour of every day...relentlessly.
The uncertainty is tinged with tiny moments of hope surrounded by huge chasms of fear.
The more time goes on the more I learn about this dreadful disease. All of its various guises & mutations, all of its seriousness & it's near misses. The reality is that we very nearly ran out of time but fate thus far has not let that happen. There aren't the words to explain my relief on that one aspect alone.
It's so surreal. Even now, 6 months in I still think someone's going to tell me that they've made a mistake; that I'm going to wake up & it's all just been a really horrific nightmare, but I know that won't happen. I wake up well before the birds every morning & the first thing that pops into my mind is cancer. I start my day contemplating cancer & I end my day contemplating cancer & in between those two points I basically think about cancer. There is nowhere to go, there is no escape & there is absolutely zero let up. We have no routines & even the medical routines (of which there have been too many to remember) are spurious given that we never know how Dylan will be on any given day. Something as simple as losing a tooth meant he was hospitalised because his gums wouldn't stop bleeding so he ended up having a platelets transfusion because he had no immune system & his blood couldn't clot. The side effects of all the drugs have been unbearable for us to watch & moreover for him to endure.
Telling people who don't know that Dylan is ill has been the hardest...having to see the despair on their faces is so unbearably difficult. I have stood in front of people having broken the awful news to them, whilst they on occasion would understandably start crying I would be smiling & trying to pull some positive message of hope from my numb mind. Even now, I still try to make people feel better when they ask how Dylan is by using upbeat language & putting an efficacious spin on things. The truth is it would be a total understatement to say that it's been really bloody shit every single bloody day.
I find that I am constantly pushing away the dark & trying to see the light.
I feel as though I have been preparing for life at the same time as preparing for the possibility of death.
I probably prepared harder for death because I know that would be much harder to deal with. At times I have been 60/40 either way having watched some really low points whilst we have been going through this journey. Like the time when Dylan's oxygen levels dropped to 80%. When as a last resort they called in a consultant cardiologist from his home one evening because they couldn't work out why his oxygen levels were dropping. When they wheeled in the portable X-ray machine to check his chest was ok. When they called in a physiotherapist to help him breathe properly. When there were what seemed like all the doctors in the hospital surrounding his bed trying to figure out the next move. When he didn't eat for days. When he couldn't bend down or get back up. When he couldn't climb into bed or get up or down the stairs. When his mouth was so full of ulcers that he couldn't even smile & had to be put on hydration & morphine because he couldn't ingest anything due to the pain. When we were fearful that the ulcers in his mouth would cause his intestinal tract to become infected. When he was neutropenic. When he lost control of his bowels. When he started vomiting at 2 in the morning & we had to rush him into hospital where he ended up staying for days. When he needed blood transfusions & platelets transfusions. When we watched his tiny body slide into the CT & MRI scanners, not knowing what on earth they would reveal. When I watched the faces of my medical friends read the results of that first MRI scan. When he had two general anaesthetics in 3 days for a biopsy, a bone marrow aspiration & to have his Hickman line inserted through his neck in order for it to emerge from his chest so that they could start to administer the toxic combination of potentially life saving chemotherapy drugs. When we found out his tumours were really aggressive & were already on his spine (just missing his central nervous system); his ribs; his shoulder blades; the entirety of the left hand side of his head (not quite reaching his optical nerves) & fast approaching his kidneys. When the consultants told us that they couldn't believe he had kept going for so long.
I know a life tainted with the fear of death on a daily basis may well be harder to deal with so I err on the side of cautious optimism because the consultant right at the beginning of this torrid journey told us that they were "cautiously optimistic".
The thing is, cautious optimism is not the same as optimism & that right there is the tightrope.
He has had various periods of being on different doses of steroids. The effects of this medication alone is mind blowing in the extreme. A mild mannered, happy-go-lucky funny boy turns into an overly emotional violent antisocial hermit that eats the same thing on the hour every hour for weeks at a time. There is no conversation, there is no reasoning, there is just riding out the hell. It's like having a supercharged psycho three year old on acid with the appetite of a pack of hyenas & the manners of the world's most aggressive alley cats. I kid you not.
Coming off steroids is equally distressing. His body physically hurts for days after he stops having them but his appetite hangs around. He starts to behave more like a twelve year old girl who's just about to start her period & his physicality begins to resemble a pumpkin. He's all puffed up & round. You frequently make special trips to the supermarket at stupid o'clock in order to satiate his cravings. You bulk buy shit only to discover the next day he doesn't really like chicken drumsticks anymore so you go back the next day to buy burgers. You stop bulk buying having learnt that lesson so you visit the supermarket two to three times a day just to get whatever it is that he needs. There's no way you'd do that if everything was "normal", but everything is very far from "normal".
I have tried to anticipate his moods to see if he will engage in a variety of gentle activities. Entertaining a child who has no energy whilst you yourself don't have any physical or mental energy is a bit like going fishing with chopsticks...a novel concept that will never really take off. The boredom & the restraint is almost terminal. Some days I long for a visitor & some days I just want to lock the door, close the curtains & curl up in a ball. During the week I stay at home probably 90% of the time with Dylan as his immune system is generally low so he's easily susceptible to infections & illnesses. If his temperature goes the tiniest bit over or under a certain degree then he will be hospitalised, the same applies for pretty much any illness. He can't have treatment if his blood count isn't at a certain level, which means that treatment is delayed & the whole process is even more drawn out.
We have had some wonderful days where the things we once took for granted are almost worthy of celebration; a trip to the park, a trip into town for breakfast, an ice cream. We have to watch what he eats, there's a long list of foods that are banned.
At the weekend I make sure I get out; anywhere. I have a wonderful group of friends whom I have known for years, they know me inside out & they have been an incredible lifeline. In some cases just a mid week glass of wine & a chat has lifted me.
Each time one phase of treatment comes to an end & a new one starts I feel my body physically shaking with anxiety. I have knots in my stomach & I'm full of fear & anticipation as to what the next round will bring. Each phase of treatment has brought with it its own set of issues, not forgetting the main one, the actual cancer.
In between all of this is Ruari; 17 years old. One teacher has described Ruari as "probably one of the most sensitive boys" they'd ever met. From a very early age this boy has shown a highly mature level of empathy accompanied by a strength & resilience that would put a lot of adults to shame. We have tried to protect him from the really grim stuff, that alone is so difficult. He has been broken by this whole experience but has kept on going through all of it with a dignified strength & an unwavering level of support for his brother. Sometimes I forget how much it must be hurting him. Several times he has broken down, had sleepless nights & been lost for words. Through all of this he has started a new school, organised a charity head shave for Cancer Research raising in excess of £5K, played countless rugby matches, endured several injuries & sat his A/S levels. In all that time he has asked for nothing. He has grown up on one of the hardest learning curves & has taken it all in his stride. He has such beautiful qualities. I worry daily about him too.
All that said (& believe me there's plenty more), I know that I have been blessed with a heroic rock of a partner in Nick. He has been propping me up through all of this. Teamwork has taken on a whole different meaning.
We have had the unending love, support & understanding from Abi & Jamie who somehow manage to pick up on all the undercurrents & subtle nuances of how we might be feeling despite their distance from us. We have been completely blown away by the kindness & overwhelming generosity of our friends. The steady stream of cooked meals & thoughtful gifts has allowed us time to catch our breath.
Thus far, whilst this experience has been & remains to be completely & utterly horrific, it has also brought an undeniable amount of positives. I am humbled by the constant efforts of family & friends. I have been humbled by the unwavering efforts of the incredible medical staff on Dylan's hospital ward. The charities that help us cope with the mundane day to day stuff that we don't have time to do ourselves are quietly milling about in the background. Incredible support has come from all over the place.
Not only am I Dylan's mother but I have also become his carer & the two things are very different.
A lot of the time when you hear stories about raising really ill children it's often "they've saved me" and "they've made me a better person". That is all valid and true to a point. However, the range of emotions is rather more complicated. It's a never ending deluge of feelings and not all of them are good. There is fear, doubt, loneliness, jealousy, bitterness and also anger. There are moments when it weighs so heavily on you that you wonder if you would take the path you've been put upon if given the choice. There are moments when you insert humour where others might think it's bad taste. This aspect of caring is something that is rarely discussed openly because people don't often like to be confronted by the reality of human nature or by the reality of a situation to which there are no answers.
It's a never ending struggle, day in and day out.
On a plus point...I really like my new haircut
#whoknew #standuptocancer 👊
Original post:
Some of you will know already that my beautiful boy Dylan was sadly diagnosed with cancer just before Christmas.
On 16th December we had an appointment with a consultant at the hospital because he'd had a swollen cheek but nobody could really work out why. That very same day, he was admitted to the Children's Hospital for Wales & we were told it was highly likely that he had cancer.
On the 22nd December he was finally diagnosed with lymphoblastic lymphoma, a rare but treatable disease.
For that reason I am shaving my head on World Cancer Day (4th Feb 17) in order to raise money for Latch.
Latch is an amazing Welsh Children's Cancer Charity & genuinely has taken away a lot of the stress of everyday life.
The way they look after us & other families with very sick children is beyond wonderful & I would like to give something back & help support a charity that is fully supporting us.
Dylan's diagnosis was a complete shock for us all; Dylan had seemed so healthy & hadn't presented with any symptoms that would point to such a terrible illness.
He has had MRI scans that have lasted hours, CT scans, X-rays, a bone marrow aspiration, weekly lumbar punctures & a Hickman line inserted into his body through which he now receives a cocktail of toxic chemotherapy drugs to try to reduce the tumours which were on his spine, his ribs, his shoulder blades & in the left hand side of his head. He is responding well to treatment but he has started to lose his hair, he no longer has the strength to walk up & down the stairs or the strength to walk anywhere really.
We stayed in hospital for two weeks over the Christmas period & he was finally let home as an outpatient on New Year's Eve.
Whilst we were in hospital, I cannot begin to explain how wonderfully we were looked after...not just by the nurses, doctors & consultants but also by this incredible charity that basically supports the oncology ward.
Dylan's illness has opened up a whole new world to us.
The amount of stuff that goes on in the background in the world of childhood cancer is staggering & more significantly it is truly humbling.
For example, on Christmas Day, I opened the door of Dylan's hospital room to find an enormous bag of wrapped presents. Every child on the ward & their siblings each received bags full of lovely gifts all organised by Latch.
On Christmas Eve, Nick was able to stay in one of the Latch ensuite rooms above the oncology ward so that we could be together to open Dylan's stocking & presents early on Christmas morning. Other families also had ensuite rooms upstairs along with lounges equipped with TVs, game stations, books & toys. There is also a fully functional kitchen, a dining room, a laundry room & access to the Latch offices & their incredibly friendly staff.
Even now that Dylan is an outpatient, the support from Latch continues; they have provided us with a car park pass, a large Maclaren pushchair, help with forms, counselling should any of us need it...the list is endless, there is nothing that they haven't thought of.
Cancer is more than an illness, it doesn't just affect the person who is diagnosed with it.
It is an antibiosis where we, our families & our friends are all forced to live with this disease & it's side effects day in & day out. Some days cancer has the upper hand, other days we do.
It is a life changing disease that touches everyone involved & this is just part of what Latch helps us deal with on a daily basis.
I am standing up to cancer & I hope you will join me.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.