Desperate Measures

Caitlin's rash has gotten worse, she's still not eating, & her temperature is still up & down. She was given fluids during the night due to not eating & drinking, another sign that they really don't want to give her a feeding tube.

There was talk of Caitlin going to Addenbrookes as Ipswich wanted Caitlin checked out even further, as they weren't sure what was causing the rash. She had traces of blood in her urine, & the antihistamine wasn't getting rid of the rash. It wasn't long after that Caitlin was sick, so what little stuff she had in her stomach, soon wasn't.

She was whisked away to Addenbrookes pretty quickly, once again with blue lights & sirens & that's where we are now. She's been asleep since I got here. The doctors have had a look at her, given her fluids & laid out their plans. A further investigation is required, which means x-rays & probably an ECG again. We may not find what's causing the infection, its all part of the process & they're not alarmed. If they were they would tell us.

We don't have a timescale & that's about all I can write at the moment.

XxX

Another 48 Hours

Caitlin had broke out in an angry red rash, her temperature had spiked again & that she would more than likely be kept in for... Another 48 Hours! (yup, I managed to get them both in!)

We're not sure where the rash has come from, whether its a reaction to the new blood or what but they wasted no time & have given her an antihistamine through her line.

That's as much as we know at the moment. Caitlin is now asleep & we're getting ready to head home & get more stuff together for the coming days. As soon as we know more I'll update.

XxX

48 Hours

I didn't update yesterday but I'll bring everyone up to speed as best I can.

Friday

Caitlin didn't have a blood transfusion as her blood count came back up a bit, she did have antibiotics though, as her temperature concerned the doctors. She didn't eat much, & slept a bit during the day. The doctors had already said that they were going to keep her in 48 hours after her high temperature to monitor her so we had to quickly change & arrange things accordingly.

I took Alisha home that evening as they both needed clothes desperately & then dropped her back up the hospital for part one of the overnight stay.

Saturday

I went to work (wished I hadn't but thats a whole different & boring plumbing story) while the girls stayed at the hospital. Caitlin still wasn't eating much, but was colouring & playing as much as she could. By the time I got to the hospital Caitlin was having a blood transfusion. After several observations the doctors decided that the count was too low & set up her line for the transfusion.

Caitlin had made a card & a bag for my cousin Lucy so I took it over & managed to see some of the family which was lovely. Feel a bit out of the loop (feel a bit out of it in general more like) so it was nice to see them all.

I managed to then see Jessica at my mum and dads which is always awesome. With work, hospital & home it's hard to balance everything & get to spend decent time with Jess as she hasn't got a clue what's going on, & is usually pissed off to see me as I'm not around to play with her!

It was at mum and dads where Alisha rang, which leads me to...

Some Like It Hot

It's 22.04 & Caitlin is fast asleep. Only problem is she's wired up to a machine giving her platelets.

She hasn't eaten much & hasn't been feeling well all day. Her temperature has been really high so taking no chances we find ourselves back at Ipswich hospital. Caitlin will have a blood transfusion in the morning as all her counts have been pretty low. The one good thing for Caitlin is she hasn't got to have her "yukky medicine" tonight.

Update again tomorrow when we have more news.

XxX

Hunger

It's been a while since I've updated last so it's time to go through what has been quite a hectic week.


Caitlin is now on Regimen C. After her MRD came back with the results we weren't after, Caitlin was moved from Regimen A to C. This meant a more intensive course of chemotherapy and includes more drugs which I will do my best to explain.


I'll start with the worst one of the bunch for Caitlin which is Mercaptopurine. This is one of the major chemo drugs we have to give Caitlin, and it's also the one that takes the longest. Not through the application of the drug, but that it stresses Caitlin out so much to take it we have to be patient and coax her into having it. It's an orally given drug, and also toxic to those not having chemo so we have to wear plastic gloves and dispose of everything associated with it into a special "Sharpe's" bucket that Addenbrooke's having given us. She has to be Nil By Mouth for 2 hours before having it as well so we have to make sure dinner is earlier and that she doesn't eat or drink for those two hours as it works best when the stomach is empty. This has been tricky as Caitlin falls asleep if it gets too late and then makes it so much harder to give as waking her up already stresses her out. There aren't any words to describe how emotionally stressful and how gut-wrenching doing this is. We've tried to explain to Caitlin that it will help her and that it's for the best, all you see is a four year old, scared and feeling punished. It's the one drug that's made me pour a whiskey straight after giving to Caitlin to calm me down. It's awful.


Septrin is a orally given drug that we give Caitlin only on weekends. It's a banana tasting yoghurt that Caitlin doesn't like as she doesn't like bananas! She now also has Cytrabine. This is a chemo drug that destroys cancer cells by interfering with DNA synthesis. She has this once four times a week, from Tuesday through to Friday and is given by the Community Nurses who come to our house and gives it to her through her Hickman Line. Again, this is a toxic drug that is vacumn packed and kept in the fridge. The Nurses coming to ours to do it is a blessing in disguise as I can work without having to worry about taking the girls to the hospital. Cyclophosphamide is given through Caitlin's Hickman Line. It attaches to DNA in cells and kills off cancerous cells. It is also a type of alkylating agent. This is a "long day chemo" drug as it takes a while to give it to her so it will be an early start and a later leaving time for us at Addenbrooke's. What I will do at some point is scan the flow chart we have, as it explains the timing of all of the drugs and the stages of Regimen C.


Caitlin has been sick a couple of times, both around the time of giving the Mercaptopurine. One was straight after giving it, and one was just after waking her up. I don't know whether it's the stress of taking the drug, or just the side effects from them all. She's also been given an assortment of drugs, for constipation, to help her go, for anti-sickness. Poor girl has so many drugs inside her, her body doesn't know what to do.


The other problem we have now, amazingly, is that Caitlin has lost her appetite. Whatever we put in front of her, she'll eat a little bit and then say she's full up. Even if she's specifically asked for a dinner, she won't eat a lot of it. It's almost like polar opposites of 4 weeks ago, and something we have to be a bit careful with. She's at 20kg at the moment, if Caitlin drops below 16kg she'll have to have a feeding tube inserted into her nose and be feed nutrients through this tube. I don't think its a very pleasant experience having it inserted so it's something I'm trying desperately to avoid. With all that Caitlin has been through, I'd like this to be the peak of unpleasantness, and not have to witness her go through that process as well. It may be wishful thinking, but I will do everything I can to make sure she eats (being proclaimed the "Best Cook Ever" by Jessica and Caitlin, I've got a job to do!).


That's it for me tonight I guess. We're at Addenbrooke's again tomorrow morning for Caitlin's Lumber Puncture. It should only be a short day there which is good, as I think it's safe to say we're all pretty drained.


xxx

Braveheart

This has been the toughest day I think we've all faced, both emotionally and physically.

It was an early morning for all of us, we had to be at Addenbrooke's for 7.30 at the ward. Caitlin was 2nd on the list, & would have her Hickman Line fitted and some chemo. She finished her dinner at 7pm the night before and would then be Nil By Mouth until her procedure, which we thought would be in the morning. As usual though, we were wrong.

It was 5.30pm when she went down for the procedure. The op before hit a few complications and took most of the day. Caitlin has pretty much cried for most of the day. To tell a 4 year old that she can't eat is a difficult thing, and it's especially hard knowing Caitlin just thinks you're punishing her. That's been the traumatic part of today. The "why" question that Caitlin keeps asking but you have no answer for. Watching her cry, not knowing when she'll go down to theatre and all the time holding it together has been the hardest thing I've had to do so far in her recovery. It's not Caitlin's fault, and you can't get angry, even if you want to. I know we say it a lot, but it's just one of those things.

The next hardest thing? Watching Caitlin go under anesthetic knowing you won't be there to watch her wake up. I had to leave with Jessica & get her fed and to bed. She'd had the same long day we'd had and didn't have a snooze, and believe me, she was due one! I was on the road literally minutes when she dropped off.

I've spoken to Alisha since I got home. Caitlin came around kicking, screaming and scratching, the side effects of the general anesthetic unfortunately. She has calmed down and is eating now, her line all in. The chemo is going to be administered tomorrow so an overnight stay for Alisha and Caitlin. Jess and Daddy have the morning road trip.

We have seen the flow chart for her next stage of chemo, but in all honesty, it's mental and my brain is frazzled. I'll write up the details hopefully tomorrow when I've got my head around it.

xxx

Nil By Mouth

Caitlin is due her Hickman Line today. We arrived at 7.30am & its now 3.15pm & Caitlin hasn't been down. The previous operation has had complications & it could be another hour/hour & a half before she goes down to theatre. The likelihood is she'll be kept in overnight as she is due chemo as well but as time ticks on, its looking more likely that she'll have it in the morning.

Caitlin hasn't eaten since 7 last night & is starving. She's pretty stressed out but there isn't anything we can do except wait at this point. Update again soon.

XxX