15 Minutes

Caitlin was due home today & after a bit of work in the morning, I wolfed lunch down & headed to Cambridge.

After chucking their suitcase in the car (its easier to load everything into that) & filling the car up with petrol I was off. I was at Cambridge when Alisha rang & asked where abouts I was. From that phone call to walking through Caitlin's room was 15 minutes & in that time her temperature had spiked again.

She wouldn't be going home today, everything had reset & we now have to wait 48 hours after her temp drops. She's back on antibiotics & fluids & we're back to playing the waiting game.

A football to the nuts, dropping a radiator on my finger, Chelsea losing to West Brom, nothing hurts as much as this.

I'll update later

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The Switch

It's late on Sunday night & I'm back at home, Jessica is at grandma & grandad's, & Alisha & Caitlin are at Addenbrookes. Fingers crossed, touch wood, stroke a rabbits face, whatever superstition you choose, Caitlin should be coming home early next week. Hopefully in the next couple of days as her temp is stabilising to a satisfactory level. Alisha just has to have training on the feeding pump & they're all clear to go home.

I'll update more when I know more.

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Day Watch

After quite a decent nights sleep for both of us, I find that time is rapidly disappearing. It's been ace spending time with Caitlin & I'm gutted its going to be over so quickly. The problem is I have to work as we never know what lies ahead of us.

Caitlin is still in good spirits, she hasn't touched her Coco Pops but she is drinking & that's at least something. Her temp is stabilizing so we just have to wait & see on that front. She took her medicines without fuss too which is great. We've played Snakes & Ladders, coloured in some more, dressed up & she's now doing a Tinkerbell puzzle (well I am as she keeps asking me where the parts go!)

I'll update later, hopefully to say her temp has stayed down.

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Night Watch

Or the Secret Sleepover as we like to call it!

I'm at Addenbrookes tonight to stay over while Alisha gets some well earned rest & importantly, some time with Jessica who doesn't really know why her parents aren't around.

Caitlin is in good spirits, for a girl who has been in hospital since the end of January its amazing. So far we've coloured, watched Barbie, watched telly & generally had a really good time. It's so nice to hear her laugh & smile, given what she's been through.

The best thing though, is seeing her eat. It's been quite a while since I've seen Caitlin eat anything major & tonight she had a scrummy burger for dinner which she's had half of. This might not seem a lot but it's a feast to us!!! She is also drinking too, not a great deal but its a start.

She's had several different antibiotics, calpol to get her temperature down, & Septrin which she has at home. Caitlin's now asleep whilst having an overnight feed through her NG tube. This is something we'll do when she gets home as well. I'm expecting a rough night as she gets up a lot to go to the toilet so I'll leave it there & update later probably.

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The Brave One

I'll try & update this as best I can given that I haven't been able to get up to Addenbrookes as I've had to work.

Caitlin is now on feeding tube (NG tube) number three, & this one looks line it's in for a while. 60 days to be precise. This is the only way Caitlin is going to get the nutrients that she's lacking by not eating. When Caitlin finally comes home, we'll have to have a feeding pump here where she can have overnight feeds. This is also another way we can administer chemo. The yukky one that Caitlin hates.

Whereas we don't touch the Hickman line, the NG tube will be used every day & unfortunately the NHS can't give us a nurse to live round our house 24/7. Alisha has had training today on daily operations with the NG tube as it'll be us who gives her the feeds & flushes of the tube & she's proven to be a very quick learner. After 60 days they'll replace the tube & we start the process again for another 60 days.

Caitlin's temperature is stabilizing which is a good sign. She's had antibiotics & ambizone again today & seems pretty bright & chirpy. On Saturday, Alisha is coming home & I get to stay up at Addenbrookes with her. She's calling it our Secret Sleepover, so if you could keep it to yourself I'd appreciate it!

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Quarantine

Caitlin has the Norovirus, or Gastroenteritis (sickness & the poops, Bradford & Bingley) & is in a strict barrier room. Only two adults at a time & no children. Seems that bringing Jess up to see Caitlin wasn't such a good idea after all.

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A Room With A View

Caitlin had platelets over the night & more fluids. With her not eating, they have to make sure that she has all the nutrients she can get & this is the easiest way to do it.

Caitlin has had chemo in the form of Peg (injection in the leg) & Vincristine (give through her Hickman. Sorry couldn't make that rhyme) today which is another good sign that Addenbrookes aren't too worried about the infection. She still has the rash but that isn't the primary concern. Caitlin's lack of eating & drinking prompted what came next... A feeding tube.

It's something we've been dreading, it doesn't seem fair that this little girl could be subjected to so much stress & torture but inevitably it was going to get worse. A feeding tube is a tube that goes in through her nose & down her throat to give her nutrients & protein. As she's Febrile Neutropenic (no immune system) she desperately needs any little bit of help she can get to build her up & fight the infection, as well as resume the chemo to fight the leukeamia. It's a traumatic experience & the first resulted in Caitlin ripping it out & made her cough up a bit of blood. Our worst fears realised.

It was here that Addenbrookes show their class & amazing high standard in dealing with poorly children. The nurse sat down with Caitlin & explained to her with baby Caitlin (a baby doll, who happened to have the same name!!!) & how the tube went into baby Caitlin & would make her better. After going through it with her they tried again, this time with no fuss, no stress. Amazing!!!

On a much brighter note, Caitlin had a visit from Nanny Jane today which she absolutely loved. She loves her Billy & Bella the dog & especially loves seeing Nanny Jane who really made her day.

Caitlin is having her "dinner" overnight as the feeding tube starts at 7. It's been a traumatic day for all involved & its at this point I'd like to mention my girlfriend.

Alisha has been in hospital(s) with Caitlin since Thursday. She's had to put up with sickness, illness, tantrums & sadness & she's still going strong. She's seen her daughter go through the worst experiences & stayed up through the night with her. Alisha has gone through the worst three months of her life & has remained strong, even though she says she is lagging. If people could leave her a message of support, I think she'd really appreciate it.

Tomorrow, my parents, Jessica & I are going to see them & bring them food, clothes & some well earned rest. I'll update again then.

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Oh yeah, the title of the post. Caitlin is in a room that's next to the lovely outdoor play area. The only problem is she's barrier & can't leave the room. Nice to see irony hasn't left us.

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