Inconvenience

Twice this week have I started writing a post and both times I was interrupted by either hungry children or by Lyra who has all of a sudden become obsessed with Moshi Monsters and was demanding screen time. Ironically I am now finding myself with more time on my hands than I like because we have just arrived in Kings- Vega has a fever.

I will try to recap our week…
We went for a four hour blood transfusion on Monday night at Kings, since Vega’s Hb was low. We got back home just before 2am and had to leave the house again by 7am to get to the Marsden for chemo and lumbar puncture. Vega was sick once in the car on the way there, this is nothing unusual, she used to get travel sick before all this chemo rubbish and obviously that has not improved with getting all sort of nausea producing medication. I usually give her the anti sickness meds before we go in the car, but I didn’t Tuesday. She seemed to be fine and had a few good car journeys the days before so I thought I might get away without it. Well WRONG!
One vomit in the car is not a problem but what turned out to be a problem was Vega throwing up a second time once we arrived at the Marsden. We were all ready to go for theatre and then she coughs up a tiny amount of bile. Well the anaesthetist comes over and says we have to cancel the lumbar puncture because once the stomach is stimulated to produce anything by vomiting it is as if Vega just ate. And all general anaesthetics are strictly nil by mouth for 6 hours previous so the lumbar puncture was off.
When no one was watching I cried a little… You wonder why? Yes so did I! I thought “Kathi, why the heck are you crying over this?” I realised that each time Vega gets chemo, but particularly when she has one of these lumbar punctures with a magic sleep, I get very tense. I feel anxious and worried and postponing one after all this anxiety just means I will feel like this again the next time.
They did give Vega her first dose of cytarabine and told us that the lumbar puncture is likely to be this Friday. They also did bloods and her red cell count had recovered nicely after the transfusion from the previous night, but neutrophils were not detectable. That means too low to find any. Wiped out. Nada. Zilch.
That is never a good thing.
Anyhow, all good and dandy and with our bag full of poison for the following days we left and went home. I felt wobbly and depressed and I confessed to my friend Beccy, who once again was looking after Lyra and Alys, that I was fearing an admission. I had this tingle on the back of my neck. Vega was fine, but something was up.
Vega had her cytarabine on Wednesday and today on Thursday, as well as bloods today who turned out to be not to bad at all. Hb and platelets fine, neutrophils at 0.1 which is much better than zilch!
The Marsden called with Vega’s fasting times for tomorrows procedure and all was still well. But then around 6pm Vega wanted to go to bed. She looked rosy cheeked. Uh oh I knew what was going on… So from around 6 she started to have a temperature, low 38 but enough for me to have to call it in.
So here we are again. Our little iso cell. Worst timing too. Ray is busy with a project that needs to be in tomorrow midday. A friend’s wedding on Saturday- the girls were so looking forward to it.
And Vega had a very special VIP invitation to a circus performance on Saturday, organised by a charity for children with cancer. A day out for all of us, but I guess we shall pass on that once again.

The doctor on call tonight has apparently been on the phone to the Marsden for over an hour, discussing if Vega should have her Mercaptopurine tonight and what will happen with tomorrows lumbar puncture and cytarabine. Needless to say the little worm is lying here in front of me already hooked up on the antibiotics.

I just submit myself to what is happening. Fighting it just makes it harder. I am hoping for a swift release…

“Let me out!!” (Vega on Monday night for her blood transfusion. They only had a room with a cot. And I didn’t tell her to get in it!)

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3 thoughts on “Inconvenience

  1. my heart aching for and with you Kathi – so sorry to hear you are back in the joys of iso ward. cry my sweet, there is much to cry about, laughs will follow at unexpected times – wondering if there is a new moshi monster to be created especially for these occasions (my friend’s 8 n 10 yr olds introduced me to them last week). crappy chemo monster ? – i hope somehow you all manage to have a treat soon as my god you deserve one. sending you hugs and strength and as much resources as you can receive. love, love and more love to you from curly bonce post chemo monster.

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  2. Oh Kathi, sounds like you’ve had a very stressful, tiring week. And all the hope for a relaxing weekend for all of you gone. I am in awe of your strength, and it’s only natural that you have a cry when things are tense. In fact, it’s important. Big kisses to all of you. xxx

  3. Kathi, hoping Vega is fever-free very soon and there are many other treats for you all to enjoy in the near future. Submit to your feelings. It’s not good for you to bottle it all up all the time. Sending big hugs and sharing your worries.

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