An exhausting day

Today was an exhausting day. It started with us being at the hospital already at 8am.

First they gave Bianca her Cytarabine through her port (thank goodness because this is usually given into her leg just under the skin which she hates). So this was quick. Then they started her on hydration. Around 11am or so (can’t remember the exact time) Bianca went into theatre to get Methotrexate into her spine. This was done as a lumbar puncture. When she eventually went back to the ward, they started her Cyclophosphamide after the 2 hours of hydration which they started before theatre. This then took 30 minutes to run through IV. Then they had to give 4 hours of hydration afterwards and check her urine to make sure there was no blood in her urine. And then tonight 2 hours after supper I had to give her a tablet (Thioguanine) which lucky she was able to chew as she hasn’t yet learned how to swallow tablets and you can’t crush it up and they don’t supply it in a liquid form.

So basically she was at the hospital from 8am to 5:30pm – a really long day. We were in the day ward and it was noisy and busy the whole day. I guess that made it more exhausting because it is a room with two beds, some couches, a play station, a TV, games, toys and books. So Bianca and another little girl occupied the two beds and throughout the day there were kids coming and going, playing on the play station, people waiting and chatting on the couches, people waiting to see a registrar, discussion between parents and doctors and so on. So I felt a bit overwhelmed by the continuous buzz of activity. I felt that the day room in Wellington has never been this crowded or busy at any given time, but I guess with all the extra patients from Wellington as well as the Christchurch day cases and any other South Island patients it is not surprising that they were so very busy.

I also really missed Caitlyn, tonight on the way back to Ronald McDonald house, Bianca asked if we would see Cailtyn tonight and I had to explain that it would only be tomorrow night. I would have really liked to bring her along, but then I do have to keep her routine in consideration. And certainly if we stayed for longer, then I definitely would have brought her along. The past few weeks, Terence and I haven’t seen each other all that much because Bianca was in for approximately 10 days, out for a few days, then back in for nearly 10 days, out for Saturday and Sunday and Monday we flew to Christchurch. And now Sanna is not feeling well and she is fully responsible for Caitlyn during the day. Lucky we are flying back tomorrow so I can give her a hand.

I saw another mom today and she was told yesterday that they had to come to Christchurch today. So very short notice and it doesn’t really feel fair. I also saw several other patients who were diagnosed in the last few weeks or days and my heart goes out to them. Everything so new and foreign and strange, trying to get your head around all the information, the treatment plan, the different medicines. I said to the one mom who was sitting there with her container full of medicines that when our kids were babies we used to always pack the nappies, bottles and so on. Now you never go anywhere without packing the medicines, rubber gloves, syringes and so on.

I just can’t wait to get to Maintenance. Even though it is still a long long time of medicines every single night, it will hopefully bring us to a point of a better routine, more certainty and certainly it will be a milestone that we would have reached. I remember in the beginning how I longed to just have normality again, but this has become pretty normal to us and one day when we have no more medicines to give, it will feel as if there must be something missing. But then even when the two years of treatment is all up, the checkups will continue, first every few weeks, then every 3 months, then eventually twice a year and at some point once a year (I guess) until she is 20.

But all in all, we have a lot to be thankful for. Bianca is coping pretty well and she doesn’t have some of the severe side effects that some of the other children get. Looking back, the whole situation pretty much taught us to live for the moment, take each day as it comes, take nothing for granted and to slow down and take stock of where you came from and where you are heading.

Medicines today:

  • Omeprazole - 1 capsule a day
  • Fluconozole - 10 ml at night
  • Co-trimoxazole - 6.25ml twice a day
  • Methotrexate - lumbar puncture [chemo]
  • Cyclophosphamide (IV with a total of 6 hours hydration) [chemo]
  • Cytarabine (into port) [chemo]
  • Thioguanine - 1 tablet at night [chemo]

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