Sunday, 26 February 2012

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

Monday, 20 February 2012

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

Saturday, 18 February 2012

The Day After Tomorrow

We've had the phone call (we had it yesterday actually but I had to wait to use the post title!) & Caitlin is confirmed for her Hickman Line on Monday at Addenbrookes.

Same rules apply, we have to be there for 7.30am, we have to bath her in a special wash the night before, & she has to be absolutely fine to have the op.

Monday will be a stressful day all round for us I reckon as it is an operation that Caitlin's having. I'll just be glad when its Monday night & I'm writing this saying everything has gone well. We'll have a better understanding of what chemo Caitlin will be having next on Monday so once I know I'll write about it.

It's been a funny few months for all of us & I would just like to thank everyone again for the support they've given us all. All the messages, cards, best wishes, teddys & toys, it's really made the girls feel special so I thank you all.

If all goes well I will write the blog with a small Jack Daniels & coke on Monday evening to celebrate. A small one!!!

XxX

Hairspray

Thank you to the Little Princess Foundation & Studio Nine in Southend for making Caitlin smile like this:

XxX


Tuesday, 14 February 2012

Back to the Future

After the events of last week we returned to Addenbrookes today for Caitlin's review.

It almost felt good to be back there, a little bit of normality in the chaos, but then you realize what time in the morning it is & you return to the swearing, bleary eyed, caffeine fuelled mess that is me!

Today was due to be a routine check over of Caitlin, have bloods taken, ITMX in the back & then home. That happened, with a slight addition. After her initial review I was asked to speak to the consultant doctor who is overlooking Caitlin's recovery. He wanted to speak about how Caitlin was doing & to talk about the next stage.

He was happy with Caitlin, she was bubbly, energetic & seemingly getting over the effects of the steroids. The main point of the talk was the results of the Bone Marrow & the MRD which was taken at the end of week 4. The bone marrow had come back with good results, showing no Leukaemia in the marrow. The MRD results however, hadn't been so good. There was still a small level of Leukaemia in her cells after 4 weeks of chemo.

Bugger.

The Hickman Line scheduled for the 27th had all of a sudden been issued as a high priority, to be done within this week or the next. The reasoning for this? Caitlin would be upped to Regimen C.

Bollocks.

The MRD should indicate no Leukaemia, but with a small amount still showing, Caitlin's chemo has to be increased. The specifics of Regimen C is unknown to us at the mo, as to much information will just overload our already bursting brains! What we do know? Even a small amount is classed as a "high risk". A definite increase of chemo, which is to be given intravenously, rather than orally. The weekly reviews will be at Addenbrookes, not Ipswich hospital, & that Caitlin will get better & get through this.

I refuse to believe otherwise. We're now on 24 hour standby for the Hickman, once Caitlin has that fitted, we move on to the next phase.

XxX

XxX

Sunday, 12 February 2012

The Neverending Story

After the ordeal of everyone being ill, we thought that some balance would be restored & we could get back on track. We thought wrong! After half of her bottle of milk this morning, Jessica then threw it all back up.

We cleaned her & everything up & gave her juice to help soothe her throat & keep her hydrated, but she threw that up too. Not taking any risks we rang the out of hours NHS phoneline who promptly booked us an appointment at the Riverside Walk In Clinic.

They checked her over relatively quickly considering how busy they were, & pointed us in the direction of PAU, Ipswich Hospital. It seems to be like a magnet for us all.

We're currently sat in a room at PAU doing the same thing we were doing for Caitlin on Wednesday, giving her fluids & recording how much & when. She's just laid down to snooze so will hopefully be able to go home later, as long as the doctors are happy she's well enough to.

If anyone would like some bad luck, we appear to have plenty in spades at the moment.

XxX


Friday, 10 February 2012

Dr. No

Yesterday we spent half of the day at Ipswich Hospital, giving Caitlin Diarlyte to help keep her fluids up. With her Hickman Line due today it was touch & go whether she'd have it fitted due to her being ill. She'd had blood taken to check her levels, & after liasing with Addenbrookes a decision would be made.

We got the phone call just as we were leaving the hospital, she wasn't going to have the line fitted. We were to still go up for a review but they couldn't risk doing it. It was a bitter blow, but an understandable outcome. We went home & got our stuff ready for the hotel (which we couldn't cancel & as we were still going to Addenbrookes would come in handy) & got ready to leave.

It was at this point I was sick.

Now, I usually reserved being sick for youthful wild nights on mixed drinks & memory loss. I was locking the door whilst holding Jess & then I was putting her down & being sick in the bin (that reminds me, I've got to clean the bin).

After dropping Jess off at my Mum & Dad's we managed to get to Cambridge without incident. I was being picked up from there by my friend Leon as we were going to Norwich for a gig we'd got tickets for in 2011. I left the girls heading out for dinner at Frankie & Benny's & looking forward to a quiet night in the hotel room.

I won't go into the gory details as this blog isn't about us, its about Caitlin, but I was sick down the side of Leon's car doing 60mph (sorry dude!!), Alisha spent the evening cuddling the toilets, & Jess was sick everywhere at Mum & Dads.

We rang Addenbrookes & they told us not to come up. We couldn't risk giving it to the other kids on the ward. The hotel room we were in at the time was all but a waste of money. We couldn't get angry or upset, it was just ironic.

We're all at home now, Jess has been sick again since, & none of us are very hungry. We don't know when Caitlin is due to have her Hickman Line fitted, it could be up to 2 weeks. We'll know soon, until then we've just got to concentrate on getting better.

XxX

Wednesday, 8 February 2012

Definitely, Maybe

It seems there's always bad news when I post twice in one day & this one is no exception.

Fabio Capello has resigned as England manager.

Actually, that's the good news. The bad news is Caitlin's temperature has been up & down most of the day so they've kept her in overnight. The doctors are worried that she might have a bug or an infection & they're not taking any risks.

This might spell trouble for Caitlin's Hickman Line though. If she has any kind of infection & goes into surgery there's a risk of septicemia, & its just not worth it. Just as we think everything is calming down & working out, there's a twist. There's nothing we can do about it, we just have to wait & see what the doctors say tomorrow. It's all a bit unknown at this point.

I've been staring at this for 5 minutes, & I can't think of anything else to write. Update again tomorrow.

XxX

Never Say Never Again

This morning, Caitlin was sick.

I was eating porridge (yup, I know. Not the best thing to eat before dealing with sick!) getting ready to go to work when Caitlin called down saying she had been sick. She had been sick, a lot actually. Poor Caitlin also had diarrhoea so we got her into the shower as I stripped her bed, & she was still being sick. She did this for about an hour, so a phone call to Ipswich hospital and a little while later we're where we are now: room B, PAU Ipswich Hospital.

1st thing the doctors want to do? Put a cannula in. Damn it, there goes my "no more needles" theory. This time, they can't do it. Caitlin's hands have taken all they can, so they have to take a blood sample by a finger prick. She's been on Diaralyte to give her fluids & she's asleep at the mo. For the 1st time in a while she's not hungry. Usually that'd be a sign of the decrease in steroids, but given where we are right now, we're taking nothing for granted.

Update again later.

XxX

Monday, 6 February 2012

Idle Hands

Today was (fingers crossed) the last time Caitlin has to have needles, for a while at least. She had chemo today at Ipswich hospital, and chemo means having a cannula in her hand. The only problem is her hands are so sore & bruised there aren't many veins they can use.

After the 3rd time they found a good vein & managed to give her the chemo. She was pretty upset, but by the time we left Caitlin was asking what we having for dinner!

No trip to Addenbrookes tomorrow which is nice. Caitlin has a home visit from the nurses at Ipswich on Thursday just to take a blood sample, to make sure everything is ok for her to have her Hickman Line on Friday. Busy week, hopefully with a good ending. Once the line goes in, it takes the pressure off us & Caitlin. No more needles!!!

It's at this point I'm going to ask if there is anything that people want more of in the blog. Pics? Info? Don't want people to think I'm rambling all the time.

XxX

Thursday, 2 February 2012

Good Night, and Good Luck

Tomorrow is the start of Week 5. It's hard to believe that we started this journey (I was really hoping not to use that word, sounds like a bloody X-Factor audition!) 5 weeks ago, but here we are. Tomorrow is an important marker in Caitlin's recovery, with the results from her bone marrow and lumber puncture the doctors will be able to determine Minimal Residual Disease. Broken down, this means that they'll know whether the chemo is working as it should or whether they have to up the dosage and more her to Regimen B.


It also marks the start of a busy week (as if it hasn't been busy already!), Addenbrooke's first thing tomorrow for her bone marrow testing and lumber puncture. After that, we're off to Ipswich Hospital so they can give Caitlin her VCR. We start reducing the steroids on Saturday (YESSSSSSSSSSSSSSSSSSSSSSSSSSSSSS!) as well as administering some different drugs this week.


Back to Addy's on Tuesday for her review, Ipswich hospital on Thursday then to Cambridge to stay in a cheap hotel overnight for Friday's 7 o'clock start, and the fitting of her Hickman Line. Got it? Phew!


We had an unexpected couple of parcels when we got back on Tuesday from Cancer Research UK. Caitlin had been nominated (thank you Denise!!!) for a Little Star Award. She received a certificate, a t-shirt and silver Littlle Star award, a star key-ring and a £50 TK Maxx voucher! She was so proud, and Jessica even got an award for showing real courage after her sisters diagnosis. 


Little horrors!!


She also was given a beautiful quilt hand stitched by Love Quilts UK with different sections stitched by different people. The generosity displayed by people has been heartwarming and genuinely incredible. Thank you so much for all the support that has been shown to Caitlin. We appreciate it so much in what has been the hardest of times for all of us.


xxx