Reaching maintenance sure makes you think

Today Caitlyn had to go for her one vaccination. I was so not looking forward to it. So in a way it was lucky that Sanna was on leave so Terence took Caitlyn in for it. I figured that after 7 months with Bianca, I've had my fair share of painful injections and other uncomfortable things (even though we are nowhere near the end of the treatment). I guess with Bianca it is easier because I can talk to her, explain what is happening, why it is important, but Caitlyn at 10 months wouldn't be able to understand. Bianca and I waited in the car (I'm not quite ready to take Bianca into the doctor's rooms filled with possibly very sick people). We had to get Terence from the train station and then drove straight to the doctors. I sort of expected to hear Caitlyn cry, but nothing. Terence said she cried perhaps for 8 seconds and she was all happy and smiley when they came back to the car. Next one is at 15 months (wonder how I could delegate that one too?)

I can't believe that Caitlyn will be 11 months next week. Then one more month and she is 1 year old already. She is growing up so fast! I'll have to start thinking about her birthday party. For the past little bit she has been sleeping through the whole night. In bed by 7pm, then we get up for her by 6am or 6:30am. I just hope that by writing it here, I have not jinxed it. I will see tonight :-).

It's been a restful week or two. Although still daily fluconozole and co-trimoxazole three times a week - we never have a day without any medicines. But no chemo. And Bianca's hair is slowly but surely busy growing back. It will take a long while before it is noticeable because it is blonde.

Tomorrow we have to go to the hospital for a blood test again. Most likely a finger prick. She doesn't like those, but it is important that she stays used to it as she will still need blood tests for a very very long time, long after the treatment finished. This will be for them to check that her counts are high enough to start maintenance. If so, then we will be back on Friday to start the next part of our journey. This will be the maintenance part and chemo pretty much every single day.

Bianca's been in great spirits. I'm just really hoping that the Dexamethasone especially does not throw her out too much. It has a nasty ability to make the kids sad, depressed, have mood swings, temper tantrums and can even mask an infection and of course it does make them very hungry. She will get Dexamethasone pretty much every single month for 5 days for the rest of her treatment.

The first couple of months will be where we will evaluate how she reacts with this part of the treatment. When she seems energetic and when she might seem down. This will be important to help us make a decision about starting school. If she has too many down times or too many times where her levels are too low or too many infections, then we may decide to wait until she is 6 before starting school.

But one day at a time. Never use the "P" word (planning). And slowly but surely we will get there. Every day that we get through is one day closer to the last day of treatment. Of course this day won't be without its uncertainty or its fear. And in some respects when we get to this point it will almost be like getting to the end of a very long race when all you want to do is collapse because it has been exhausting and non-stop. I'm just hoping that we will have enough positive things to help cushion our "falls" then and so many more bright and positive things to focus on. This will be the day that we will probably stop and really reflect and realise the magnitude of what we went through.

Everything about leukemia has become manageable to us, we cope, we are positive, we find comfort in knowing all about Bianca's treatment plan and I can't think of any other subject I have read about as much as leukemia. And it sounds crazy, but it feels "safe" knowing that we are actively doing something to fight this disease as much as we can.

But sometimes you sort of forget that what we are dealing with is actually quite big. After all leukemia has a very different ring to it than cancer. And sometimes I get quite a shock when I discover and read all the other stories out there. There are just so many of them.

When Bianca seems well and happy it is pretty easy to forget that she is actually really really sick with roughly a 75% / 80% survival rate.

But don't get me wrong. I'm not complaining about our situation. I don't even ask "why us?". I have fully accepted that this is part of life and that this is a road we were destined to walk. But reaching this stage of our treatment, it does sort of make you think a bit about what will lie ahead and what will come and what we have gone through so far. Reaching maintenance feels like we have reached the stage where we can start counting down, one day at a time. When we no longer speak of the end of treatment being 2 years away, but now it is "next year".

It does feel good though, knowing that the road ahead will be much less intense and should be less of an uphill. So I feel really positive about this part of the journey. The whole experience has been such a learning opportunity. And through all of this, Bianca has become my "hero" and my inspiration and through her bravery and her positive attitude she has showed us that there is just so much more to life and that we can truly achieve anything we ever set our mind to. And that we are so much stronger than we sometimes think we are.

So we are ready for whatever may come along now during the remainder of our 2 year treatment process.

But enough ramblings for one day.

Medicines today:
  • Fluconozole - 10 ml at night
  • Co-trimoxazole - 6.25ml twice a day

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