Live from Kings

So here we are. The start of our two weeks break from chemo and we are in hospital. I can not deny that I am gutted. After having been here for a few nights just over 4 weeks ago I know what expects us this time and I packed our bag for a lengthy stay. But whereas I fought it a bit last time, trying to argue with the docs, trying to get them to hold back with the antibiotics, I just gave in today. Because Vega is actually acting quite poorly and I know she is not right. She has a fever over 38c which, if it lasts longer than an hour warrants a visit to our ward at kings college hospital, Toni and Guy ward to be precise. I will probably blog a few shorter entries over the next few days to let of some steam and connect to the outside world.

So what happened?

After our eventful transfusion night on Thursday, Vega had a blood test on Saturday-

Vega’s blood counts 05/05/12

Vega’s counts first, average in brackets behind.

HB (red blood cells)- 11 (9.5-15)

WBC (white blood cells)- 0.16 (4.5-11)

Neutrophils (infection fighting part of the white blood cells)- 0.04 (>1 is not neutropenic, normal range starts at 3)

Platelets 21 (150-450)

All as expected although platelets were already quite low again so we were told to watch her and if she would start to have bruising we would need to bring her back in before our next scheduled visit for chemo on the 08/05. We held out until the 08/05, Tuesday but I knew we were heading towards transfusion because Vega did have a few bruises and some bleeding inside her mouth but nothing I couldn’t deal with at home. We went to kings on Tuesday for chemo, another shot of Vincristine and a bloodtest and left her port accessed anticipating a possible platelet transfusion. Parking is a real pain at kings, but we made it out in under 2 hours- a new record. Good too, because I had Alys with me, roaming the corridors and determined to pull every plug from the wall that she can get her busy little hands on. Alys even gave a kiss to our oncology nurse, Kat, which speaks for itself. She is not too generous with these signs of affection and only special people get kisses from Alys. So we just arrived back home when I get the call from Kat.

Vega’s blood counts 08/05/12

Vega’s counts first, average in brackets behind.

HB (red blood cells)- 11.6 (9.5-15)

WBC (white blood cells)- 0.16 (4.5-11)

Neutrophils (infection fighting part of the white blood cells)- 0.04 (>1 is not neutropenic, normal range starts at 3)

Platelets 5 (150-450)

What? 5? Indeed platelets were super low so pronto pronto back to kings, again with Alys in tow. Transfusion hooked up and we made it out again in just under 2 hours. It must have been my lucky day!

Anyhow, this morning, Vega had really shaky legs, peed herself before breakfast and then threw up all over herself in the buggy on our way back from the shops. I knew something was up and sure enough at 10.15am her temperature was bang on 38c. Now my instructions are to wait 1 hour and recheck and if she is still febrile to take her to hospital. Febrile neutropenia is no joke and the protocol in hospital is antibiotics via drip ASAP. I let her rest at home but checking her temperature frequently it did not go down and at 12pm I called Beccy to get Alys and headed off to kings.

So there we are. Isolation right next to the playroom (I know that sounds like a big old tease, doesn’t it? It is!) I am sure I will blog again later, since my nights are always sleepless here. Fabulous start to our two weeks “off”. I had to cancel our trip to see Shrek, and after telling the ticketing staff our sob story he ever so kindly refunded the tickets. Did I not write a blog entry about no weekends from cancer? Well there are no holidays, days off, guaranteed theatre visits or even just a moment to relax from it. I can’t stress enough how much it sucks. But none of this matters now, at all. As long as Vega gets better.

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3 thoughts on “Live from Kings

  1. You and ray are strong parents and it must be so very hard to go through all of this. Every time I read your blogs it makes me want to cry for you and vega, no parent or child should have to go through what you guys go through. May she have a speedy recovery and be back home again soon. Lots of love as always x x

  2. Ergh ergh ergh, hugest of hugest hugs, virtual cups of tea and anything else I could possibly pass to you through this medium you can have xxxxxxxxxxxxxxxxxxxxxx

  3. Big hugs to you Kathi and so bummed you didn’t get a break from treatment – Shrek another time – am usually up late any time you want to vent, swear or talk about any distracting thing you want. My heart goes out to you – isolation next to a play room so hard. praying those neutrophils pick up quickly and you can get home and rest. hugs to you both and hugs to those fabulous nurses xxx

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