A merry-go-round

Dear Jack

Last week Prof. Marshall wasn't able to give us much news but I've noticed that some of your medical forms are now starting to mention 'myelofibrosis'. I was expecting him to say today that they've formally diagnosed you with this condition. But instead he said you don't really show the typical features of myelofibrosis and, if you do have it, he thinks it's more likely to be a secondary condition. This would mean there is an underlying disease. At this stage I don't really care what it is anymore, I just want someone to tell me: "Ok, we know what it is and this is how we're going to treat it".
They're now doing further tests for genetic mutations and chromosomal abnormalities. Prof. Marshall said it could take weeks or even months before they diagnose you and decide on a treatment plan.

Today, the story got a bit of a twist again. He now mentioned two possibilities he had ruled out a few weeks ago: aplastic anemia and a rare form of leukemia. It sounds a bit like we've gone the full circle.

You'll be having another blood transfusion this Friday and a bone marrow aspirate next Tuesday.

Tonight the girls and you were supposed to stay at dad's but nanny is sick so we decided you'd stay with me so you don't get contaminated.
We had the best night ever! First we played 'Connect 4', then we had our dinner in the living room (which you found very exciting as you're usually not allowed to eat there) and after dinner we showed each other our craziest dance moves and moved around on the floor pretending to be snorkeling. Then we unfolded the couch bed and installed ourselves in front of tv with our doonas. You called it our special movie night and kept saying "nice hey mum, just with the two of us". You certainly milked it for what it was worth: "Mum, since it's just the two of us, I think we can break a few rules and have some more treats." We didn't go to sleep until 10pm.

Now it's 3.00am and you've got a temperature so I have to decide whether or not to take you to the hospital. Jeez, I hate this. We've been told to take you to hospital without delay if your temperature is 38C or more. As soon as you arrive there, they will do a blood test and put you on an antibiotic drip for 48 hours in case you have an infection. But I know the temperature is just from the hormone injection you had this afternoon. You had it last time too and I was quite cranky that they kept you in hospital for two nights and put you on antibiotics. But they're adamant that any infection can be life-threatening for you so they don't want to take the risk. Hm, dilemma, dilemma... For now, I'm just going to do some household work and keep checking your temperature every half hour.

Lots of love
Mum