This afternoon Bianca asked me to pin a tea towel to her dress and then she said "I've got a cape. I'm Super Girl. Look Mommy, I'm flying". I couldn't help smiling, because to me she doesn't need a cape to be Super Girl and with everything that she has been through so far, she has learned to fly!
Today is exactly 1 week since starting Maintenance. It's been a great week. Bianca is still swallowing her tablets and it's been so much easier than I ever anticipated. This was the best ever advice we got, thank you so much Kate!
I'm hopeful that the way things were this past week is pretty much the way it will be for us going forward, but of course no matter how hopeful, I'm so aware that reality is sometimes very very different. Weeks like the past week is comforting, it feels great, it feels like the old days to some extent (even though we will never again have the life we had before), but I'm wary of feeling too comfortable because then if things do happen, then it will catch me by surprise and I will be totally unprepared.
I'm starting to become a little excited that I might be able to go back to work soon. But I'm just starting to think about it. Not quite there yet.
It's also been a bit of a sad week though. Every day I follow the stories of so many other brave kids out there fighting their battles courageously and this week I read that 3 little children (Ava, Dawson and Isaac) passed away. I feel so sad for them. It really broke my heart. Events like these really pull me back to reality when I realise just how tough this battle or ours really is. When things go well it is easy to have a false sense of security, but things can change just so quickly and unexpectedly. So I pray that these families find the comfort that they need to help them through this difficult and challenging time.
Today is exactly 1 week since starting Maintenance. It's been a great week. Bianca is still swallowing her tablets and it's been so much easier than I ever anticipated. This was the best ever advice we got, thank you so much Kate!
I'm hopeful that the way things were this past week is pretty much the way it will be for us going forward, but of course no matter how hopeful, I'm so aware that reality is sometimes very very different. Weeks like the past week is comforting, it feels great, it feels like the old days to some extent (even though we will never again have the life we had before), but I'm wary of feeling too comfortable because then if things do happen, then it will catch me by surprise and I will be totally unprepared.
I'm starting to become a little excited that I might be able to go back to work soon. But I'm just starting to think about it. Not quite there yet.
It's also been a bit of a sad week though. Every day I follow the stories of so many other brave kids out there fighting their battles courageously and this week I read that 3 little children (Ava, Dawson and Isaac) passed away. I feel so sad for them. It really broke my heart. Events like these really pull me back to reality when I realise just how tough this battle or ours really is. When things go well it is easy to have a false sense of security, but things can change just so quickly and unexpectedly. So I pray that these families find the comfort that they need to help them through this difficult and challenging time.
Medicines today:
- Mercaptopurine - 1 tablet a night
- Methotrexate - 1.5 tablet at night
Posts
1 comment:
Congratulations on 1 week of maintenance. Wow. What an accomplishment. I read a story of a girls getting her port out b/c treatment is over and I can't even imagine.
We understand the issue of the 6mp on eating - this last time Chloe was she was taking it at 9 pm, and she would often go to bed hungry so she has to have it earlier for the interim maintenance period.
She is on the high dosage methotrexate every 14 days and 61 days of the 6mp for her interim maintenance. She will be in the hospital for 3-5 days each time she takes it to watch for liver problems. She is to take her school work with her as they have scheduled medical students who tutor. This will be good. Did you have the high dosage?
I loved the story of you all blueberry picking a while back and have been buying blueberries - $4 for 1/2 pint YIKES, but yummy and good for her. The healthy antioxidents are worth the price.
So sad for Dawson's family - I have also been reading - such a dear soul and the realization that each day is a gift and it can turn at any time.
Blessings to you all -
Post a Comment