Treatment Overview

I have tried to look up some information for people to give them an idea of things that Alice and I talk about as totally normal. It is funny how quickly you take for granted Doctors language.

This website has many booklets that we were given initially. The hospital has more of their own.
http://leukaemialymphomaresearch.org.uk/information/childhood-leukaemia
This is the first of many booklets I was given, it has been passed around the family
http://leukaemialymphomaresearch.org.uk/sites/default/files/chall_ukall_2011may_2012_1.pdf
This is a fantastic book which explains to the child what the technical terms doctor’s use actually mean.
http://leukaemialymphomaresearch.org.uk/sites/default/files/wigglys_world_aug_2011.pdf
This give a general overview of how we have to deal with Alice’s diet as we have to assume she is neutropenic throughout her treatment as it can happen very quickly and between hospital visits.
http://leukaemialymphomaresearch.org.uk/sites/default/files/dapn_jan_2012_0.pdf

I have half a forest worth of paper telling me about how to keep her active, from the physiotherapist, what we can feed her, from the dieticians. What the side effects of the drugs might be, from the pharmacist. I have a folder of consent forms and flow charts explaining treatment.

We then have all of Alice's charts for taking her medicines for the different stages of treatment, her behaviour charts, charts for drinking enough and charts for rewarding activity. 
I haven't bothered with eating charts as she has cravings that she cannot seem to control, such as eating potato waffles 3 times a day for the past week or when she was first at my parents, cheesy mashed potato for breakfast lunch and dinner. Not to mention the fact she is either starving or not eating at all. The fact that I manage to get her to sit at the dinner table once a day with us whether it be for 2 minutes or for an entire meal is in itself a small win every day for us.  Her sense of smells seems heightened and she will tell you if you need a shower and this also applies to food for example the smell of a sweet pudding cooking stopped her from coming into the dining room to eat.

Her sleep patterns have changed and we are back to having a nap during the day most days. She has to wait for an hour after eating to take her evening chemotherapy (including milk drinks) which means timing dinner so she can get into the bath and bed at a reasonable time; we fail at least once a week to do this. I have tried to give her the medicine when she has already been to sleep but that ends with tantrums and trauma from/to both mother and child. I also have nights when she isn’t happy in her own bed and wants my reassurance. She did think that there was a loop hole in her sticker chart ... I spent the night in my own bed ... by getting me to sleep with her for the night. I like her thinking, it worries me that at 3 she is already able to pick up on these things.

Her treatment is split into different stages.

Alice is on Regimen A which thankfully is the least intensive and for low risk patients, Alice being a girl under the age of 5 is in the highest survival rate group.

Induction (weeks 1-5) for 5 weeks, we started as soon as she had her diagnosis.  So far it has been the worst part so far as she was very ill and withdrawn.

Consolidation (weeks 6-8) for 3 weeks, We had a week’s break at this point as she was in hospital on antibiotics and had a blood transfusion following a break we had the next  3 weeks of treatment. Adding a week to our time in UK.

Interim Maintenance (weeks 9-17) of 9 weeks, which is where we are currently in our programme. This involves alternate weeks in the hospital having treatment and afforded us the opportunity to go home for a week at Easter. We are hoping to get another 2 weeks at home at the end of this stage as we have 1 week of oral chemotherapy and a week off treatment before the next stage

Delayed Intensification (Weeks 18-24) is 7 weeks and is when they get as many different types of chemotherapy into her as possible or so it seems at the moment. It is the part I am dreading the most as some of the drugs can be nasty we will have to wait and see.

Finally we have Maintenance which is the great unknown to us at the moment; she will have oral chemotherapy and monthly injections  with steroids and 12 weekly lumber punctures. Life should run pretty smoothly and her current end date is in March 2015, if she were a boy we'd have to add another year to that, there is always something to be thankful for!