I don't really like being on maintenance.

Don't get me wrong, maintenance is certainly more settled than the intensive part of our treatment. Certainly we've had more opportunity to do things that are more normal, certainly it is a nice change to go from weekly hospital visits to monthly hospital visits. Certainly it is just so great that Bianca can go to school and things like this.


I remember when we reached maintenance I had a meeting with one of the Christchurch doctors when we were still in Wellington and we had this very rushed meeting and he ended with "see you in a month". He left the room and I remember asking the day stay nurse who was at the meeting too if I understood correctly that we were only due back at the hospital in a month. I remember at first feeling excited that we had monthly visits instead of weekly or fortnightly, but I also remember suddenly feeling as if they removed our safety net. To suddenly go from those weekly visits where you do weekly blood tests to monthly visits and for a whole month you won't know whether your child is supposed to be treated as neutropenic or not, would it be safe to go out to public places or not? That felt a bit like unfamiliar territory all over again.

So now on maintenance we have to rely so much more on our instincts and I guess to some extent make decisions and assessments about things that we were never trained for, it's not like we ever studied paediatric oncology or even nursing.

Take for example, the past 2 weeks or so Bianca has had a runny tummy. She goes more often than she used to, she goes several times a day, it is different to how it was before, just last night she was up 3 times to go to the toilet (which is most definitely not like her), recently we got the test results from the sample we had to get through our GP and the results came back... clear. There you go - no bugs. So then why is it still this way?

She also regularly complains of a sore tummy. Not "bend-over-double" kind of sore tummy, but definitely to the extent where she is aware of it. And yesterday she vomited a mere 20 minutes after getting her steroids. Just once though, but we were not sure whether we needed to repeat the steroid dose or not. And again, not like her. So we called the hospital and they asked the usual questions to which Terence responded "no she doesn't have a high temperature", "yes, she is still eating and drinking, less than usual, but she is on steroids and that sometimes does happen", "yes, she is a little bit lethargic, lying on the couch, but she is on steroids and it does often happen like this on steroids, so not sure if this is normal behaviour or not". Their answer, "no don't repeat the steroid dose", "if she is still eating and drinking and has no temperature then they don't need to see her". So despite the fact that she goes to the toilet more often than usual, that things seem different to normal, that she often complains of a sore tummy, unless she stops eating and drinking or develops a high temperature and since her sample came back clear, there is not much more they can do. So it feels a bit frustrating. It feels that there is definitely something wrong, but if the sample came back clear, then what could it mean? So I guess on Monday at our next appointment I will be asking her oncologist about this and see what ideas he may have.

When we were still on the intensive part of our treatment every phase had a beginning and end. Each phase was pretty much 56 days and it really felt like we were making progress, moving towards our end of treatment date. Now on maintenance each phase is 84 days long. We still talk of day 1, 29, 57, 84 and so on. And of course as soon as you reach day 84, then the very next day it is day 1, no change, always the same. And in some respects it doesn't feel as if we are getting any closer to that last day of treatment. But don't get me wrong, we now have a break of at least a week as we wait for Bianca's counts to recover, it does feel nice to have a bit of a break from the same routines, but we also don't really like being off chemo at all, because that feels risky, being on treatment feels safe.

The other thing is of course Bianca's low platelet level. Here we are on bruise watch. Earlier this week, Bianca bumped her head. We were dropping Caitlyn off at daycare and there was this pillar outside the daycare centre and Bianca stepped forward and must have slipped a bit and then bumped her head. So whilst not a big black bruise, it suddenly had these little red pin-point spots where she bumped her head. I was told that if we notice these red pin-point spots we should call the hospital and bring her in because she may need a platelet transfusion then. So when I phoned them, they told me that they didn't need to see her because platelets at 38 is not low enough to transfuse and unless she starts getting more bruises all over her body then we don't have to worry about it. Of course I can't help wondering whether her levels are busy dropping some more or busy going up.

Times like these it would have been so much nicer being on weekly visits instead of these monthly visits. And fair enough Monday is a week from our last appointment (but only because of the low levels) and once she is back to where she needs to be then we'll go back to monthly appointments and back to having to make all the assessments and decisions ourselves and "is this something to worry about or not?"

I am anxiously waiting for Monday's appointment because I really want to see what her levels are then. I can't help wondering why her platelet- and haemoglobin levels suddenly dropped after she's been on pretty much the same dose of chemo for the past few months pretty much, I mean I know it is supposed to affect the neutrophils, but why suddenly her platelets and haemoglobin. Of course it is probably a perfectly normal situation and it is probably just freaking me out a bit because her counts have been so good for so long and the sudden change caught me by surprise, so Monday's meeting would be good. But of course now it feels as if the time is dragging, as it often happens when you just want to get the results.

Sorry for rambling - I can't wait for things to return to boring and normal!


Anonymous said...

Lea, I can on some level understand what you're going through. I can compare what you're feeling to what we go through waiting the 48 hours between pregnancy blood tests each time I've been pregnant. Being completley helpless but stressing none the less,hoping and praying that everything is ok, but not actually knowing what is happening. With no outwards signs the waiting can seem like eternity. Praying that time speeds up till Monday for you.

Annie - Steven's mom said...

Aaaaawww Lea
Sending you a really big cyberhug. You write those fears and worries so well. Monday seems like so far away now, but it will get here and I hope and trust that Bianca's counts are totally fine.
It's just got to be worrying - no matter how long things have been good for.
I am going to just believe that it was just a hiccup and that her tummy clears up soon and that the road is going to be smooth all the way. I really look forward to hearing that I am right :)
love and light - lots of it