Demon Dex Day 5

She woke up smiling at Sam this morning and said "Mr Popoos" so that was a good start she even managed some chocolate milk for breakfast. When we stepped outside this morning it was snowing, very light flurries but snow nonetheless and they loved it, Sam even tried to tasted> Of course he quickly complained that it was wetting his glasses!
She was a bit better today not much crying but still needing lots of cuddles, my arms and shoulders are now paying for that, so this will definitely be a short entry. Another strange effect of this Chemo is that she is refusing to have a bath, one of the events that she looks forward to most. Her tummy is also obviously affected and she doubles over with stomach cramps. To top it all off those two new canines are popping through.
Tonight at bedtime she was briefly back to her old self giggling and throwing herself on the bed, Sam and I even got cuddles and kisses from her, on a normal day kisses are quite few and far between so it was a welcome treat for both of us :-)
Tomorrow hopefully she'll be even better and eat some food! Pity though as soon as she recovers it's time for the next round on Wednesday - how cruel is that?

Demon Dex Days 3 & 4

I was simply too exhausted to write yesterday, Paige cried from the moment she woke up till she fell asleep at night, I guess she just felt so rotten that she wanted to communicate that really loud and clear. It does wear on you though by midday you just need to poke your face out the window and feel the cool 3-5C breeze your face to clear the senses.

Today on the other hand the clouds cleared and we saw a glimmer of our beautiful Paige shining through. She painted, coloured, drew on the chalk board and had lunch too! We even did some minor shopping together as a family :-). I guess the Peg on Friday really did her in over the last two days. At least she can tell us that her jaw is hurting as well and we can treat that, the other symptoms not so much. She was so alert today that she never slept, so she was in bed by 6.00pm and asleep, Sam on the other hand not so much, so since I had 10 mins to spare while the roast pork sat, I've now updated the blog :-)

This week I hope will be calmer than last week, she'll have Chemo again on Wednesday and we get a break from clinic tomorrow, so here's wishing that she continues to eat and put on some weight to take her through this horrendous delayed intensification..........

Demon Dex Day 2 and Peg

My poor baby screamed her heart out during and after her Pegalated Asparagianse today, afterwards she just lay in my arms and felt sorry for herself. Thankfully this is the last time ever that she will have this particular chemo administered. She kept pointing to the spot and crying......

We came home and she lay on the bed for awhile, then had some fruit and we went back to bed for a nap, she eventually fell asleep and I had to wake her to get Sam at 4.30pm. Of course we had another 2hr stint of crying this evening despite my best efforts to entertain her. I think that she's teething again which isn't helping the already painful bouts of Chemo she has had this week.

Hopefully the weekend will be better with Russell to help entertain her

Day 1 of the Demon Dex

I must say that even though I think I can prepare myself for the effects of dexamethazone, I'm really only kidding myself.


Poor Paige already looks pale and was a bit wobbly today, she fell over quite a few times but luckily didn't hurt herself. She's not eating much and is alreday miserable. I'm not sure if it's yesterday's Chemo or the steroid that's making her so miserable. It is really quite heart wrenching to watch her be ill as she gets older you can see that she is isn't her usual self and she expresses her pain very quietly and sadly just folding her arms and lying face down wherever is nearest even if it's on the floor.
When she eventually fell asleep I must have dosed off and even Sam realised how exhausted I was cause he let me sleep for an hour! I woke up in a panic, ran downstairs and  found him where I left him sitting on the sofa watching TV, he said "mummy why don't you lie on me and borrow my blanket" I did of course and again woke up 45 mins later with the poor child scrunched in the corner of the sofa and stroking my head gently. He must have slipped out from under my heavy head and just let me sleep. How on earth does a 3 1/2 year old have such empathy? Sadly though if I am this tired, I can't begin to imagine how Paige feels as she's the one that's actually had the Chemo, all I did was watch and entertain her as best as I could.

It's really not fair on the kids, Paige has people poke and prod her all the time, then she's given all these nasty drugs that affects everything including her senses. At dinner time she started with a biscuit curl, then moved on to plain chocolate, then orange flavored chocolate, then vanilla soya pudding and eventually she got to her rice and chicken. She was obviously trying to get to something that she could taste. All the while she was crying, she cried for at least 2 hours this afternoon. In the meanwhile poor Sam is trying to have dinner and make her smile and cope with a completely frustrated mother.

Anyways, tomorrow is another day and we will head down to QA again after dropping Sam off to school so that Paige can have that horrible injection. I am a bit nervous as Paige's specialist oncology nurse Wilf will not be there :-(

Back on Track

Clearly my daughter decides when she would like to start her Chemotherapy and when I've had enough frustration. Certainly the last couple of days have been extremely frustrating.

Yesterday we headed down to QA after dropping Sam off to school at 1.00pm as planned and we encountered the same issue of her line being completely blocked, so the Starfish Matron Lorraine who was looking after us yesterday quickly arranged for an X ray to be done. By 2.15pm X ray was done and we waited for a plan, and we waited, 2 hours and some later we were still waiting and by then even the chair and buggy blocking the door couldn't hold Paige in the room anymore. Of course our little miss Paige can now open doors all by herself! Finally we were told that if they could not clear the blockage with another dose of Urokonaise that she would be scheduled for a replacement Central Line on Thursday. A replacement means surgery, an overnight stay at Southampton General, not to mention the stress and trauma that goes along with it. A full blood count was also needed and that was taken one tiny drop at a time from my poor daughter's fingers :-( She was not happy about that at all, and neither was I. It was all too obvious to me however that they were all stumped by the blockage.

So again after dropping Sam off to school this morning at 9.00am, Paige and I reluctantly headed down to QA to meet with Wilf for Day 3 of the blocked line. Finally after much effort from Wilf we had blood!!! Plus her blood results were back and she has a whooping 1.7 neutrohils - YAY. Piam Brown confirmed that Chemo could start today. So after a further infusion of Urokonaise we left QA at 1.00pm and got to PM by 2.00pm. Unfortunately we weren't seen till 4.00pm and Chemo didn't start till 4.30pm, but hey we started delayed intensification and Paige is in ripping form.

So after three very frustrating days, and lots of hanging around doing nothing for hours, Paige has finally started her last block of intensive Chemo and we're chugging along again.
Today she had
1. doxorubicin - the chemo that makes her hair, eyebrows and eyelashes fall off,
2. vincristine - the chemo that makes her walk on her tippy toes.
Plus seven days of the dreaded dexamethazone, which is the steroid that makes her COMPLETELY miserable and out of sorts. Later this week she'll have Peg Asparaginaise which is 'intra muscular' and very painful.

So a special thank you to Elfrieda your payers worked really well and we are back on track. Now some much needed sleep for me....

Central Line Blocked :-(

Paige and I were supposed to be enjoying a quiet day at home and had been previously excused from attending clinic at the the QA this afternoon. Clearly Paige had other ideas! When the community nurses arrived at 11.00am for routine bloods and a bung change, there was no blood in sight. We hung her upside down, sideways, jiggled her about, got her to run up and down and play but no luck. We were obviously destined to go to QA today. So we met Wilf at noon and he administered a drug called Urokinase which was quite a fiddly job, but she was really good. Anyway, we were back home by 2.00pm and we have to return tomorrow, 24 hours later to see if the drug has worked. Fingers crossed that it does, otherwise we'll need a four hour infusion of some sort. Didn't pay attention much as I really need this first drug to do the trick. 
She's been so well over the weekend, eating and drinking and playing loads with everyone.


Enjoying some strawberry jam and a serious look....

and today settling down with a lactose free chocolate and Samuel's baking hat!

Her hair has grown so much, it actually felt odd when I had to shampoo it recently :-).


I was quite looking forward to improved results and finally being able to resume her treatment this week... Wishing us good luck for tomorrow.

Chemo still delayed

Wilf phoned this morning with Paige's blood results and it's not good, she still has no neutrophils whatsoever and her Chemo will be delayed for another week. This has happened so many times that we should be accustomed but it is still extremely worrying to me that she takes so long to recover. You can tell that she feels like crap though, she's very clingy and wants to be held all the time. My arms are about to fall off from holding her so much. Her appetite has dipped a bit as well, again, all goes with having no neutrophils. Please note that when I say no neutrophils I mean it's so low it won't even register!
Struggling to find the brighter side at the moment........

Back at Hotel QA

Yesterday all went well with Paige's Lumbar Puncture, and Samuel was actually quite helpful at times in terms of distracting her and also holding open the doors for me. Paige showed Dr Bevin how to use her stethoscope and then lifted her shirt so that Dr Bevin could have a better listen, so funny!
Anyway we came home and played then Paige went down for a nap, she woke up at 4.30pm crying and boiling hot, she had a temp of 38.5C, so we were off to the QA. She met the criteria so we'll be there for a minimum of 48hours until the cultures are back. Her neutrophils are also still quite low at 0.1 and her CRP is 7, so something is going on, we just don't know what it is yet.
I must say though that the team at QA really spoil her, the play specialist came bearing gifts of a brand new tinker bell dress as well as duplo and cars for Paige to play with.
So we'll be in the hospital for the next couple of days

Delayed Intensification II

Never a dull moment with my Paigey Lou. She's started to potty train herself, she wanted to sit on the toilet yesterday so I took out the potty. Then today every time she needed to do a poo she took off her trousers and sat on the potty with her nappy and did a poo. She did this three times by the way! She is so clever my daughter :-)

Anyway Paige was due to start her delayed intensification tomorrow with an Lumbar Puncture followed by Vincristine and Doxarubicin in the afternoon, this is the Chemo that makes all her hair fall off :-( But her neutrophils are too low at 0.1 to start, so after being told everything was cancelled, we've now been asked to bring her for the LP tomorrow and we'll test her blood again next week and hopefully start her Chemo next week Wednesday. Whilst I'm really not looking forward to this last intensive block, I am quite disappointed about they delay. Last time her hair, eyebrows and eyelashes fell off.

Paige is looking so well now, despite her low count. Her poo finally made it to the lab and it has tested positive for sugars, it now needs to be analysed further to determine the specific sub-type. This apparently will take weeks to be completed. So tomorrow we'll aim to get to Piam Brown bright and early at 8.00am, so that Paige is first on the list and we can come home early. In an effort to keep Sam in the process he'll be going with me to the hospital for the first time, good luck to me.

Happy New Year

Happy New Year to everyone (albeit a couple of days late!)

Paige ended the year with a very sore tummy and neutrophils in the pits. She is very clearly lactose intolerant to the point where 2 oz of milk has a severe impact on her...poor little heart :-( Fortunately she seems to be on the mend and had gained a small bit of weight and her neutrophils seem to be on the rise. I am not convinced that her sore tummy is only due to a lactose intolerance but the consultant has advised that we need a clear week of no lactose to confirm same. luckily she did a poo at clinic so they now have a 'fresh' sample to test. Her previous sample was lost in transit.

Her final block of intensive Chemo begins on Jan 10th, so not such a great way to start the year but at least it's hopefully the last intensive block and she can then move on to long term maintenance.

Here she is having juice instead of her usual milk for breakfast