Things we took for granted

Yesterday MLG walked down the stairs on here own without holding on to the banisters. What's the significance with this? It was around March-April time that we noticed that Our Little Girl was having difficultly walking down the stairs, little did we know then that there was a tumour growing inside her and that this was affecting her balance. Is the chemo working, we do not know. It is nice having back our little girl who is speaking, talking and playing, long may it continue.

A surprisng week

Last week was a surprise. Things with MLG had settled down, we were expecting to have numerous blood transfusions (as the chemo hits harder) yet this was not the case. MLG’s own body started to work against her.

It started with the usual blood being taken, we had elected to have the GSCF (which is a drug to boost the immune system) given to MLG through her lines (less painful, stressful) even though it was an inconvenience as we had to drive to the hospital. On tuesday blood was taken, counts were made and as predicted MLG had to have both red blood and platelets the whole process would take 5 – 6 hours. AND then it happened, we took her temperature 37.8, this was not good. I drove her to the hospital to have her blood transfusions; the nurses once again took her temperature, 38.7. Now it was to time to time to worry, had we not been in hospital we would have gone straight to the hospital. Slowly MLG’s temperature dropped as the platelets and haemoglobin helped (boost of fluid)  but still her temperature was high, as result she said in hospital for 3 days and 3 nights (I did the nights while my wife did the days). Throughout whole the process meds were given every 8 and twelve hours. Blood cultures were taken and it was found that it was her bacteria (Staphylococcus) that had caused the temperature.

MLG dealt with the experience. I found hard it in part because the sleep deprivation and in part because I saw and heard babies that were screaming in pain, others that were lying with oxygen masks over their faces. The most disturbing experience I had was seeing a 2 week old baby with a cleft pallet  and the fear, concern, distress and love that was on their faces.

An unremarkable week

This week has been remarkable because it has been unremarkable. Mlg had chemo, but was only sick for a short time, the chief oncologist (cancer specialist) had a chat with my wife and the jabs have stop (GSF) because they are being given through my daughters Hickman lines (so daily visits to the hospital). We are in shock because it has been an emotionally demanding  week. The meeting with the oncologist was tough (8.30 pm in the dark!!!! It was scheduled for 10.30 that morning) I was not their as I was at home looking after our son.

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Another round of chemo

Mlg is just finishing off her 5th round of chemo and it's hitter her harder !!

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.

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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.