Living this life....
As i sit here in my small hospital bed at the side of Daniel i suddenly realised something - we are actually living this life. Somehow (and im not after pity here) we where put on this journey - what for? that is something perhaps we will never know. One thing i do know is, this is it. For the next 6 months or so we have a "new normal" another "new normal".
When Daniel was diagnosed with liver disease 5 years ago i never believed life could get any tougher - this is tough. Trust me when i say having a child with Cancer is something you cannot prepare for, the highs and the lows.....I have met some wonderful people here already, inspirational characters and kids with spirits you cant imagine and yet we all have one thing in common - our children have life threatening diseases (mostly Cancer in various forms) and it brings us all together to this place - Alderhey Oncology unit, how come this one place can be the most wonderful place full of smiles and laugher - full of people with spirit and grace, how can that even be possible with what we are going through.....
A mum saw me in the kitchen area earlier - i was crying, Daniel had been in so much pain with his peg yesterday (feeding tube in his tummy) he could barely walk and had been crying out in pain - it is now impossible to give him a big hug, wrap my arms around him and squeeze like we used to - it hurts way to much, anyway back to the story, she saw me upset and came over with some chineese sui-meis and chilli dipping sauce, she smiled and said "thought these might cheer you up" (obviously could sense my love for good food!!) the point is, she (the mum) is going through hell he little boy who is 9 now has relapsed Lukemia and is on high dose chemo, this child may not survive and she is getting me to cheer up! Think THAT says it all about the people here.
As for Daniel, he continues to do well, aside from his peg (which he is now on 2 creams and a medicine for) he has put on weight for the first time in over a year and is now 19.3 kgs!! (thanks to the overnight feeds through his tube)....although it causes him pain the pro-s far outweigh the cons. He has handled the chemo extremely well and is on course to start the 2nd chemo on 15th Feb. We do however have to wait for his numbers to "come up" before starting it again, so the date isnt fixed in stone. They still wont let us out of here because of risk of infection but we have been home most days for a few hours at least and have all eaten togethre which is good for us all.
Thanks for checking in and keep looking.....xxx
When Daniel was diagnosed with liver disease 5 years ago i never believed life could get any tougher - this is tough. Trust me when i say having a child with Cancer is something you cannot prepare for, the highs and the lows.....I have met some wonderful people here already, inspirational characters and kids with spirits you cant imagine and yet we all have one thing in common - our children have life threatening diseases (mostly Cancer in various forms) and it brings us all together to this place - Alderhey Oncology unit, how come this one place can be the most wonderful place full of smiles and laugher - full of people with spirit and grace, how can that even be possible with what we are going through.....
A mum saw me in the kitchen area earlier - i was crying, Daniel had been in so much pain with his peg yesterday (feeding tube in his tummy) he could barely walk and had been crying out in pain - it is now impossible to give him a big hug, wrap my arms around him and squeeze like we used to - it hurts way to much, anyway back to the story, she saw me upset and came over with some chineese sui-meis and chilli dipping sauce, she smiled and said "thought these might cheer you up" (obviously could sense my love for good food!!) the point is, she (the mum) is going through hell he little boy who is 9 now has relapsed Lukemia and is on high dose chemo, this child may not survive and she is getting me to cheer up! Think THAT says it all about the people here.
As for Daniel, he continues to do well, aside from his peg (which he is now on 2 creams and a medicine for) he has put on weight for the first time in over a year and is now 19.3 kgs!! (thanks to the overnight feeds through his tube)....although it causes him pain the pro-s far outweigh the cons. He has handled the chemo extremely well and is on course to start the 2nd chemo on 15th Feb. We do however have to wait for his numbers to "come up" before starting it again, so the date isnt fixed in stone. They still wont let us out of here because of risk of infection but we have been home most days for a few hours at least and have all eaten togethre which is good for us all.
Thanks for checking in and keep looking.....xxx
posted by Liz at 10:28 pm
3 Comments:
Hi, Liz. I'm always lurking here, so I thought I'd leave you a quick comment. You, Daniel and your family are always in my heart. If you can, send me a message on Facebook (Laurie Chiasson) with your address. Anthony has something he'd like to send to Daniel.
Liz - with little kids do they not do the the shots to increase white and red blood cell counts? They gave me one called neulasta for WBC and then there's another called pfil...something to raise RBC.
Anyhoo, sending prayers for Daniel's blood counts, feeling better soon, and love to all.
As you can see your link worked, thanks for taking the trouble to send it to me, it's appreciated liz, as you know your mum keeps me updated with daniels progress and i in turn keep my family and others updated, everyone send their love and best wishes for daniel and the family, it must be a struggle for you, just the thought of what you are all going through is scary to me, but as usual you are all coping so well, especially our little soldier, i can't believe how well he is coping, god forgive me but i would have ran and never stopped running if it were me who had to go through it, but he just takes everything in his stride and for that he will always have my admiration, he is a trooper.
keep up the good work all of you and know that we are all rooting for you and that you are constantly in our thoughts.
thinking of you always
claire xxx
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