Not home yet

So it seems my post on Wednesday was slightly premature. Elizabeth’s bloods are still not recovering which although expected is disappointing after the great result we received on Wednesday morning. They now believe that the result was an anomaly.

She has had her fourth dose of Chemotherapy now and on Wednesday she will have another Lumbar puncture and bone marrow test but this time it will be looked at on a molecular level to decide exactly how they will be proceeding. Based on the results we will either stay on Regimen B or move up to Regimen C. I will post more information about this when I have it but it basically means that she will be having intense Chemotherapy for either four or eight weeks and then a couple of months of just oral chemotherapy before they do another four or eight weeks and then onto the oral chemotherapy again.

She is suffering a lot of pain the last few days and this means I haven’t been getting much sleep hence the lack of blog posts. Some of the drugs she has been taking have side effects like pains in the legs or constipation. At the moment she is having abdominal cramps which from the look on her face seem like really bad period pains. Due to these pains and her constipation she hasnt been eating and has lost just under a kilo in 4 days.

We had been discussing a nasal gastric tube for the last week to help her with the amount of oral medication that she has to take as she was struggling with them and then with the weight loss I had been telling her that she might have to be fed through it too. On Thursday evening half way through drinking a high calorie milkshake she was sick, she looked up at me and said one word “tube”. After a brief discussion with our nurse she informed him that she wanted her tube in the morning. Yesterday the tube went in and today they started her feed. It will be a few days before she will be getting enough calories through it to really make a difference and I am happy to say that she is still wanting to eat and drink when she can as well as take the medicines that she likes the taste of orally.

Its hard watching your child waste away in front of your eyes but I am glad she took after her mum because there was a fair bit spare to begin with. Now she is on the feeds I know that it wont be long before she is getting the calories she needs and having the tube and the feeds wont stop her coming home.

We are still waiting for two good blood results in a row before we can go home but they are expected to appear some time in the next week or so.

For now we are still in the best place and seen as all she is doing is watching TV and sleeping there isnt really much need for us to be at home. Alison is loving being at school, Hubby is back to work next week and hopefully we can start to settle into a routine that will make everything go smoothly.