Not my knee

Here we go ago, another jab and MLG is saying 'not my knee' repeatability out of fear, she starts crying and curling up to protect herself!!!! It makes both my  wife and I feel ill, damned if you do damned if you don't. Then in a few minutes its off to the hospital!!! Fun, fun, fun

Ahhhh

Writhing and screaming out of fear  

The GSF jab has just been given (the nurse gave the jab slowly and carefully), Mlg has got so sick and frightened of them that she has been writhing and screaming in fear of the jab for the past 5 minutes. Ahhhhhhhhhh

Bruising, ...yuk

Mlg is full of bruises, we questioned the nurse and GOSH why this is happening and the answer is….because the GSF (a drug that is being given by injection almost daily) is suppressing the body’s ability to repair itself. So a simple bump for you, me and kids turns it the red, purple, black and green bruise (some look revolting).  Ironic they give a drug to do one thing, then have to give a another drug to counteract the side effects of the other drug!!!! I hope it is all worth it.

 

Transfusion anyone ?

Here we go again, yet another platelet transfusion .....they need to be up soon as Mlg is due for the next round of chemo soon.

How many times can a kid go into hospital in a day, two today and they are different ones. University College Hospital (UCH) to chat about the forthcoming radio therapy and our local hospital for a transfusion. She has been a star but the radio therapy and CT and MRI scans scare us to pieces.

ttfn

I'm knacked

This is a very quick note, Mlg had a red blood transfusion yesterday, all went well but the hospital was heaving. What I hated was the other children's screaming and crying.....

the week that was

I have not written since last Monday for any reason aside from being very busy. Mlg has had the harshest reaction to the chemo so far. She has had 3 platelet transfusions in the last 6 days (they only last 30 mins for machine on to machine off). The worst part of her reaction has been the vulnerability to colds, loss of co-ordination, increase in bruising (a simple bump becomes a bruise), almost daily GSF jabs (to build her immune system) and general feeling of feeling poor. This has had a very draining effect on her.

One night last week (Wednesday or Thursday) her temperature started to rise, it was creeping closer to 38 C (37.7 degrees C), we decided to contact the local hospital and warn them that we might be coming in. Then we prepared a bag and checked her temperature every 30 minutes until 10pm then every hour till 2.30 am by then it had dropped to 36.9, so it was time for a few hours nap.

We also had chats with University College Hospital (she will be having her radio therapy there) and other specialists. And we live under the cloud of the MRI scan which is due at the end of November.

MLG is still driving us mad (in the nicest possible way), her speech is improving as are her cognitive and motor skills …… Fight the good fight cause she certainly has it in her.

What a fun day !!!

Ah well another day has passed, a visit from the nurse (who took blood and gave an injection), who then told use to go to the doctor. Then a 2 calls from different departments in GOSH + a call from University College Hospital (where the radio therapy will be administered) time for lunch. Another call from the nurse to instruct us to go to the local hospital to have a platelet transfusion and then home in time for supper!!!! And that was just our daughter.