I said half way through this year that I couldn't wait to see the end of 2012.... But we're back at GOSH on New Years Eve, so 2013 is gonna start the same way this year will end....Shit. I know i should count my blessings Connor will be home for Christmas and just suck it up and realise i am lucky we get him home at all, there so many children who wont be able to get home but I hit my brick wall last Monday after 11 months and feel like I'm back at square one... Emotional, nervous, not sleeping, worrying, missing my girls and wanting our life back.
We spend 3 weeks at home all together before coming back to hospital last week, Connor was like his old self, laughing, full of energy, eating better and fighting with his sisters! his hair is all back and he gels it into spikes every morning, he did 3 mornings at school on his own and he enjoyed it so much, he loved getting his uniform on and walking into school with Ella, i will honestly admit it left me a nervous wreck and in tears constantly, half because I was so very proud of him and how far he has come and how hard he has fought to get here and half because I envisioned all these awful things happening to him without me there to protect him....his Hickman line being pulled out, spiking a temperature or just crying for me, I should never doubt Connor, he continues to amaze me. Whilst I was home I started potty training Lola, and we finally got the dog house trained , we had an emotional roller coaster few weeks and I just didn't want to go back to hospital.
But of course we're here.... Treatment is going well, Connor has started grading the nurses on how much his injections hurt him, he has dished out a few 1/10,s but refuses to cry, he clenches his fists and says "get through the pain" very dramatically which has us all laughing, the nurses say he looks great, the consultants are mostly happy with his progress , his treatment has been tweaked as he has had reactions and rashes but that's the "beauty" of a drug trial I guess, no one actually knows the outcome of it, "trial and error" they say, it works for some and not for others... and we've had that fact made brutally clear this week .
I very rarely leave the room unless Connor needs food or a drink, he likes to know where I am all the
time and it suits me fine, I dont interact with many other parents because I just need to focus on Connor and in truth, it's hard enough knowing every other child on this ward has cancer of some kind, without listening to another parents heartbreaking story, because I just about keep it together as it is and whilst some people need support from others, I'm stronger on my own.
The nurses say I'm sensible to not get too involved, they say I'm a very capable and strong person and they say its normal for me to be anxious as the end of treatment nears. I know that im struggling because I've lived month to month with hurdle after hurdle to get over whereas now there are no more hurdles,no more bridges to cross we have to just wait and see if everything Connor has been through has been enough and I feel like I'm cracking a little bit more everyday ....I'm not strong or capable I just put on a bloody good show for my children because I have to protect them.
This week I've met 2 families properly after just smiling at them and making polite converstaion in
passing,one of a 18 month old girl whose leukaemia chemo isn't working, they live 5 minutes from
us, we share the same doctors who also failed to pick up her symptoms... The other family has a 5
year old boy who also has Neuroblastoma, he was diagnosed 2 months before Connor but never got
to the trial stage, he has relapsed in the brain, spine and liver, he is yellow, he is in constant pain and his mum told me today, there is no more treatment, he has at most 2 months to live.. He is in the room next to us, and its like looking my worst fear in the face. The similarities between us is unreal, both mothers of 3, of an older child, a 5 year old and a 2 year old, both living out of the hospital, missing our other children and our partners, I don't know what to say to her, she is devastated, and I am petrified but she said to me today, dont be scared, it works for some and not others and she was happy for me, so happy for Connor because she said she feels at peacknowing all the treatment her son had wasn't in vain if Connor gets better and his treatment works, she wants it to work for us because it failed her son, and her fate is in gods hands....
Her words don't make me feel better, and I have no words to ease her pain, she watches me with
Connor, she looks so sad and she must be thinking why her son?? I look at her, and pray please not
mine.... I've seen with my own eyes how quickly this disease can come back, how aggressively it can come back, there are no guarentees and I don't know if Connor will be ok
I pray and hope everyday he will one of the lucky ones and despite what people think, when
our treatment ends, that's not the end of the nightmare, it will be a daily worry, we will be constantly looking over our shoulder.
We spend 3 weeks at home all together before coming back to hospital last week, Connor was like his old self, laughing, full of energy, eating better and fighting with his sisters! his hair is all back and he gels it into spikes every morning, he did 3 mornings at school on his own and he enjoyed it so much, he loved getting his uniform on and walking into school with Ella, i will honestly admit it left me a nervous wreck and in tears constantly, half because I was so very proud of him and how far he has come and how hard he has fought to get here and half because I envisioned all these awful things happening to him without me there to protect him....his Hickman line being pulled out, spiking a temperature or just crying for me, I should never doubt Connor, he continues to amaze me. Whilst I was home I started potty training Lola, and we finally got the dog house trained , we had an emotional roller coaster few weeks and I just didn't want to go back to hospital.
But of course we're here.... Treatment is going well, Connor has started grading the nurses on how much his injections hurt him, he has dished out a few 1/10,s but refuses to cry, he clenches his fists and says "get through the pain" very dramatically which has us all laughing, the nurses say he looks great, the consultants are mostly happy with his progress , his treatment has been tweaked as he has had reactions and rashes but that's the "beauty" of a drug trial I guess, no one actually knows the outcome of it, "trial and error" they say, it works for some and not for others... and we've had that fact made brutally clear this week .
I very rarely leave the room unless Connor needs food or a drink, he likes to know where I am all the
time and it suits me fine, I dont interact with many other parents because I just need to focus on Connor and in truth, it's hard enough knowing every other child on this ward has cancer of some kind, without listening to another parents heartbreaking story, because I just about keep it together as it is and whilst some people need support from others, I'm stronger on my own.
The nurses say I'm sensible to not get too involved, they say I'm a very capable and strong person and they say its normal for me to be anxious as the end of treatment nears. I know that im struggling because I've lived month to month with hurdle after hurdle to get over whereas now there are no more hurdles,no more bridges to cross we have to just wait and see if everything Connor has been through has been enough and I feel like I'm cracking a little bit more everyday ....I'm not strong or capable I just put on a bloody good show for my children because I have to protect them.
This week I've met 2 families properly after just smiling at them and making polite converstaion in
passing,one of a 18 month old girl whose leukaemia chemo isn't working, they live 5 minutes from
us, we share the same doctors who also failed to pick up her symptoms... The other family has a 5
year old boy who also has Neuroblastoma, he was diagnosed 2 months before Connor but never got
to the trial stage, he has relapsed in the brain, spine and liver, he is yellow, he is in constant pain and his mum told me today, there is no more treatment, he has at most 2 months to live.. He is in the room next to us, and its like looking my worst fear in the face. The similarities between us is unreal, both mothers of 3, of an older child, a 5 year old and a 2 year old, both living out of the hospital, missing our other children and our partners, I don't know what to say to her, she is devastated, and I am petrified but she said to me today, dont be scared, it works for some and not others and she was happy for me, so happy for Connor because she said she feels at peacknowing all the treatment her son had wasn't in vain if Connor gets better and his treatment works, she wants it to work for us because it failed her son, and her fate is in gods hands....
Her words don't make me feel better, and I have no words to ease her pain, she watches me with
Connor, she looks so sad and she must be thinking why her son?? I look at her, and pray please not
mine.... I've seen with my own eyes how quickly this disease can come back, how aggressively it can come back, there are no guarentees and I don't know if Connor will be ok
I pray and hope everyday he will one of the lucky ones and despite what people think, when
our treatment ends, that's not the end of the nightmare, it will be a daily worry, we will be constantly looking over our shoulder.
