Today was a long day for us. It was our monthly hospital visit, but not a theatre visit so Bianca was able to go to school this morning and then this afternoon we had our clinic visit. Things are going really well at the moment. So well in fact that they upped her daily Mercaptopurine. After they upped her Methotrexate last time, her counts dropped slightly, but not really enough. They do want to have the neutrophils sitting around 1.5 and currently ours are still a bit above that. So after this increase we are expecting that her counts will be dropping.
They didn't make any other changes and all other medicines will be staying the same. Still getting the daily Acyclovir tablets as well as her monthly IVIG transfusions.
The doctor indicated that Bianca's hair still seems a bit on the thin side and we'll just wait and see what it looks like by the time her treatment ends in 10 months time (10 months and 2 weeks to be exact).
And today we are one step closer to normality - Bianca is able to go back to swimming (providing her counts stay stable which for the time being they are). So we will look into swimming lessons again, but of course will need to make sure that the swim school lets us know of any cases of chickenpox, measles and other serious diseases. Bianca is extremely excited though and she cannot wait! We are so pleased about it for her too!
But does that mean we are past any risky periods? No, until the end of treatment there will be no time where we don't have to worry about risks and we always have to be careful - at school, if we do swimming, if we do activities with Caitlyn and even if we have people coming to visit. There are times that our risks are lower like right now with our good counts, but of course these counts are expected to drop and can drop at any time. If they drop too low, then we are back to being isolated and have to keep away from other people. Of course we are hopeful that it won't happen as it is great just doing some "normal" things again.
For the time being Bianca is still sick. She still has leukemia. She may be in remission, but to us that means having less than 5% cancer cells left in her body - it doesn't mean no evidence of disease, but good news for us is that right now on Bianca's clinical study the event-free survival rate is sitting at above 90% and that is great and positive news for us!
This week we have our monthly dose of steroids again and this afternoon Bianca became pretty emotional and clingy so it seems as if we might be in for a couple of rough days. And if I do my calculations right, then we will have Christmas on Steroids this year - so it will be interesting to see how she copes, and we'll just have to be flexible and see how it goes and if we need to celebrate Christmas on a different date, well then so be it.
But other than that, things are generally going well at the moment!
They didn't make any other changes and all other medicines will be staying the same. Still getting the daily Acyclovir tablets as well as her monthly IVIG transfusions.
The doctor indicated that Bianca's hair still seems a bit on the thin side and we'll just wait and see what it looks like by the time her treatment ends in 10 months time (10 months and 2 weeks to be exact).
And today we are one step closer to normality - Bianca is able to go back to swimming (providing her counts stay stable which for the time being they are). So we will look into swimming lessons again, but of course will need to make sure that the swim school lets us know of any cases of chickenpox, measles and other serious diseases. Bianca is extremely excited though and she cannot wait! We are so pleased about it for her too!
But does that mean we are past any risky periods? No, until the end of treatment there will be no time where we don't have to worry about risks and we always have to be careful - at school, if we do swimming, if we do activities with Caitlyn and even if we have people coming to visit. There are times that our risks are lower like right now with our good counts, but of course these counts are expected to drop and can drop at any time. If they drop too low, then we are back to being isolated and have to keep away from other people. Of course we are hopeful that it won't happen as it is great just doing some "normal" things again.
For the time being Bianca is still sick. She still has leukemia. She may be in remission, but to us that means having less than 5% cancer cells left in her body - it doesn't mean no evidence of disease, but good news for us is that right now on Bianca's clinical study the event-free survival rate is sitting at above 90% and that is great and positive news for us!
This week we have our monthly dose of steroids again and this afternoon Bianca became pretty emotional and clingy so it seems as if we might be in for a couple of rough days. And if I do my calculations right, then we will have Christmas on Steroids this year - so it will be interesting to see how she copes, and we'll just have to be flexible and see how it goes and if we need to celebrate Christmas on a different date, well then so be it.
But other than that, things are generally going well at the moment!
Posts
3 comments:
Great news about getting back into swimming again. Christmas and steroids should be interesting. At least, if your house is anything like mine, there should be a huge selection and quantity of food for Bianca to choose from if she has the munchies!
What a great hospital visit. And hearing that Bianca can start her swimming lessons again, must be quite reassuring to you! And only 10 months and less than 2 weeks until Bianca is finished with her treatments! Time is definitely moving along. We know the daily risks of children on chemo, but she is doing so well and hopefully will continue to do so until treatment is completed. I am so happy for all the optimistic news going forth.
In my thoughts
Rosemary
Thinking of you! I take methotrexate for my arthritis.
Post a Comment