A never ending story

So this morning I had to go to the hospital to sign papers again. This is just because we are currently using the Christchurch oncologists and it is a requirement from the people in the US (the people in charge of the study that Bianca is on) that we sign papers again. It made me remember 6 June 2007 - the day that we met with Doctor Anne discussing Bianca's diagnosis. I remember her explaining so many things, about Bianca's illness and we had to try and make sense of all the new words, and what it would mean to us. I had this little piece of paper with some questions on it because I was so scared I wouldn't be able to talk. In some ways it feels like a lifetime ago!

I just had a brief meeting with Doctor Rob from Christchurch. I asked him more or less when we could expect to be finished with treatment and he said that it was basically 2 years from the start of interim Maintenance. We started Interim Maintenance September 2007, so then that will take us to 2009 when we will be done with treatment. That probably then means 7 or 8 repeats of our long term maintenance (84 days per phase).

So probably somewhere in the region of 588 and 672 days that we will still walk the treatment journey.

Of course with ALL there will be no telling whether the treatment was a complete success or not. So we won't really ever be able to put this experience behind us. It seems as if for Bianca the first year after Bianca came off treatment will be the most critical and Bianca will pretty much have a 10% - 15% risk of the leukemia coming back. They will only really consider her "cured" when she reached 4 or 5 years off treatment with no relapse and that is when the chance of a relapse will be much less.

Today Bianca sat in her room and we talked about her hair growing back. Bianca then said "The leukemia is making me have no hair". I then explained that it is some of the medicines but that her hair will now be growing back. I think she is so excited at the prospect of having hair again. We can already see a very thin layer of hair all over her head.

Bianca is also doing some gardening. I got her some pots and she planted some seeds. There are some beans and then hopefully (with luck) some pretty flowers too.

Yesterday we visited the school we would like to send Bianca to. We are looking to see if we can put her into their pre-school for a term before she is due to start school, that way she will be used to playing with kids again, she would have made a few friends who would then all go to the junior school with her. She had great fun and ran ahead when the head mistress of the junior school took us to show Bianca what the class would look like. She insisted we take some apples with us. It had to be red apples, but not too shiny because in Snow White the very shiny apple was poisoned.

Here we were waiting to see the head mistress of the junior school.

This was in the pre-school class.

So of course now I have to start thinking about plans and backup plans. There will be times when Bianca may not feel up to school or when her counts are too low or when there are some serious illnesses going around. And of course we have to keep school holidays in mind too, she may not be able to go to school holiday programmes for whatever reasons. So right now my head is swimming with thoughts and ideas. We will probably still have an au pair or even a nanny, now just figuring out exactly how it will work and getting quotes and information. Sanna will be leaving beginning May and so it doesn't leave us a lot of time to come up with a plan. Either way, when the time comes we will have a plan.

Today is Day 15 of 84 (round 1 of several) of our long term treatment.

Medicines today:
  • Mercaptopurine - 1 tablet a night
  • Methotrexate - 1.5 tablet at night

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