Hotel QA - Take 4

I guess Paige didn't like my dairy free pancakes yesterday, made with almond milk and lots of love :-( or the soya free, dairy free cheese that we made a special trip to the health store to get! Yesterday was the first day that Paige didn't have a temp over 38C. She woke up a bit miserable after her afternoon nap at 4.45ish and cried till after her bath, but afterwards she was happy and playing and laughing with me at bedtime, so much so that Russell gave up watching TV and came upstairs to join the fun.
We all went to bed and Paige was put in her own room for the first time this month, she woke up sometime during the night and came in our bed. Soon afterwards I could hear and smell her poo. Poor heart I changed her and I could feel how hot she was. She had a temp of 38.2C. I called the CAU (Children's Assessment Unit) and as agreed we tried to bring her temp down manually and checked her temp again in an hour, by then it had risen to 38.6C. I just changed and headed down to the hospital. When we got there she had risen to 39.2C and was completely miserable. Plus she did another poo.
The doctors on call weren't quite sure what to do given that she was already on anti-biotics and her CRP was previously below 5. Finally at 5.00am the doctor came in somewhat embarrassed and let me know that Dr Millard had left note on how to treat Paige if she spiked again, unfortunately they hadn't checked her file but rather kept calling the Piam Brown ward for advice. duh!
So another dose of intravenous anti-biotics were given and blood cultures, blood test and a line swab was done. We settled down finally at about 5.45am and then came the smell and sound of another poo at 7.00am. Paige's tummy is almost right back where we started and her temp had only come down to 38.4C. Her neutrophils however have come up to a whopping 0.6 which I was really pleased and comforted by. Strange how her blood results are now the bane of our existence and we were both finally able get some sleep.
She woke up at 10.00am completely parched but still had a temp. We were finally moved to the ward at  3.00pm and saw Dr Millard. Apparently there's a virus about that's causing very high temperatures, the person in the room next to us is also an ALL patient and he has had some alarming temperatures too.
So another day spent at the QA but on the bright side Paige was very happy to see Sam this afternoon and we all had dinner as a family in our room. Her fever has broken and she thoroughly enjoyed her bath with Sam. When our nurse Susie came in and saw the kids in their pjs watching a DVD she asked Sam if he was here for a sleepover. I told her they had just had a bath she commented 'nice it's like being at a hotel'. It then occurred to me that in an effort to keep our family together and as normal as possible Sam quite often has a bath and brushes his teeth at the hospital. He must think that it's quite normal to do that! Also Paige seems happy when we're at the hospital because so many people come over and speak to her and play with her.
Funny where our lives are at now, being at the hospital is like a second home, I think that it also says a whole lot about the team that takes care of us, they are doing a fantastic job of making us feel welcome and comfortable.
Paige will be at the hospital for the mandatory 48 hours until her blood cultures are back, we're hoping that if her temp stays down she'll be allowed home tomorrow between anti biotics but as Louise said to me before I left the hospital tonight "that's a negotiation for tomorrow Lisa". So Russell is on night duty at the hospital yet again and I am at home with Sam.

No Change

Paige is still not much of a breakfast person but she makes up for it later in the day. After her review with the doctor, they have decided to let her continue on anti-biotics for another 48 hours and have another review on Friday. She now has a runny nose and a cough. Dr Millard did a chest X ray today just to be sure that her chest was clear, and it was. She continues to have temps above 38C which is still a worry for me but I guess it's consistent with a virus. Her blood results were quite similar to all of this week her neutrophils are still 0.1. Her tummy is till not better but she seems to have less cramps and the dietician has found her some dairy free cheese and desserts, so we're off to the health food shops to try them tomorrow, not sure how they'll taste though :-)

Still touch and Go

I wake up every morning and hope that it's going to be better than the last and that Paige has healed a little bit more. At breakfast Sam says 'mummy I'm really happy that Paigey is at home'. We had a pretty quiet morning painting, drawing and colouring, Paige ended up with marker spots on her cheek and head.
I gave her a dose of anti-biotics then we dropped Sam off to school. She slept for about 3 hours then woke up with another temperature of 38.2C. This time I was advised not to give her Calpol if she wasn't grumpy and to try and bring her temp down. It seems that this current nightmare will never end! Luckily her temp dropped and was 36.2C at our last check.
She is walking around alot more, albeit with a peculiar limp on her right and her appetite has stayed in check, her weight also seems to have stabilized at 9.9kgs.
So a good night to all and fingers crossed that there are no early morning trips to the QA!

Touch and Go

Paige had a restless night and woke up a bit unhappy. She settled at last later in the day then had a huge explosion in her nappy followed by a temp of 38C. Luckily she's still on a once daily anti biotics so I was able to give her Calpol and monitor her at home. We had a long afternoon nap, so she was a bit unsettled again tonight but eventually fell asleep at about 9.00pm, temp is still under 37.5C so that's also good.
Both Sam and Paige have had such an unsettled couple of weeks it'll take us some time to get them back into a routine again.

Not a very good, clear picture but it was difficult to keep them still!

The plan for the rest of the week is a doctor's review and bloods again on Wednesday to determine whether she may need a transfusion and if her potassium levels are back up to normal. Once her neutrophils are back up she needs to continue with the rest of her Delayed Intensification which might start next Tuesday with a lumbar puncture.

She's home again

Our little girl is at home and asleep in our bed with a temp of 36.7C.

She was discharged from the hospital at noon and is due back at the hospital for another dose of once daily anti-biotics tomorrow. Her blod cultures were all negative, so her temperature spike must be viral rather than bacterial. She's also expected at clinic tomorrow. Her mood is much improved and she is walking around and talking almost like her usual self :-). We're quite looking forward to all sleeping under one roof tonight ....

Home for the afternoon

Paige has managed to keep her temp down and is now walking around, playing and smiling alot more so they let her come home between doses of anti-biotics this afternoon. She was home from 12.30 till 6.30pm. It was absolute bliss for us all to be at home.
Unfortunately her tummy is still not well and she has 3 poos while here :-( but unlike before, she now tells me immediately and wants to be changed, she's also not crying while I change her either, so she must not be as sore as she was previously. The docs have advised that it could take as much as 4-6 weeks for her gut to recover.
In the meanwhile her super daddy has made her dairy free brioche with and without chocolate chips. Brioche was one of her favorites. As well as a mild curry for dinner which she thoroughly enjoyed.

Look at her tucking into the bone, proper west indian style ! (dressed in another of Sam's pjs of course)

Just being able to sit with Paige and Sam and watch TV and hear her laughter and giggles again was like sweet music to our ears. She's also still eating and drinking well which is another good sign.
So hopefully her temp will stay down and she'll be discharged tomorrow pending the results of her blood cultures. Fingers and toes crossed.......

Feeling Better

Finally some good news, Paige seems to be feeling better. She's eating, smiling and even told off Sam for taking her pink marker!

Here they are colouring with Russell's supervision

 Paige finally went to the playroom and was clearly having fun in the car, that's a big laugh on her face :-)

She needs to have at least 48 hours fever free to be liberated from the hospital, so hopefully she's on the mend and she'll be out on Sunday. Russell continues to spend the night with her at the hospital and Sam and I are at home.

She's home :-)

Paige was discharged today :-) She's still a bit weak and her tummy isn't yet better but her mood is already on the mend, I got smiles and giggles at lunch time. In fact when Sam came home she rushed over and helped him to take off his coat then they shared a warm, long hug :-).
Sam is thrilled that his sister is at home and so are we. It's strange what can make you happy during these times, Sam and I went food shopping and I found a hazelnut drink and an Almond Milk that Paige can have! I must admit that I smiled all the way around the grocery. Poor child hasn't had any milk since she's gone dairy free more than a week ago.

This is her snacking last night

 I deliberately didn't post this last night as she started to feel warm by 8 ish, I didn't wank to jinx her but as it turned out nothing mattered. She was a bit miserable by bedtime and we all fell asleep at about 10.30pm. Sam came screaming and running into the bedroom at 2.00am and when I felt her she was burning up, a temp of 38.7C. Russell took her to the hospital and she will be there for a minimum of 48 hours and on anti boitics until her cultures are back :-(. So we'll def be spending the weekend at the hospital, because she is neutropenic they'll probably find it hard pressed to allow her home between doses of anti-biotics until she is really well.

Dex now complete

The last dose of Dex for this phase was given this morning. She has been taken off her IVs and will now be observed for 24 hours and possibly be home tomorrow, if she can manage 500-600mls of fluid on her own. Her hair is falling off rapidly and she continues to only want to wear Sam's pj's as below

Her mood is much of the same, very grumpy and we got one giggle tonight :-) Her tummy seems to be settling and I'm quite looking forward to a less grump girl by tomorrow.
Sam cried all the way home from the hospital tonight because he wants to stay with Dad and Paigey.....

Still at Hotel QA

I spent the morning with Sam and Russell stayed overnight with Paige. She slept all morning and had a good lunch. Dr Millard was happy with her improvement over the last 24 hours and felt that we could be discharged by tomorrow after having 48 hours of hydration. If Paige continues to eat and drink and look well. By this afternoon however she seemed quite uncomfortable again, and had a pretty bad tummy so I am not so sure that we will be home bound tomorrow.
Tomorrow is her last dose of Dex until she starts maintenance, so I expected that we will have the worst of her sick tummy tomorrow and Thursday and that hopefully we'll be home by Friday.
I'm home again with Sam and Russell is doing the night shift. Hopefully this is the worst of it and we'll have our happy little girl back again in a couple of days. Despite all her pain and weakened state she continues to hold fast on her independence! She continues to feed herself even though she is barely able to lift the spoon and will only accept help after many failed attempts and we're only allowed to give her a few spoonfuls until she wants to do it herself again. We also got a couple of smiles today for which we were extremely grateful, hopefully we'll get some more tomorrow.

Back at the Hospital Again

Different day, same Paige, except her tummy has worsened overnight and she seems weaker....

We arrive at clinic at 3 ish and went in to speak with Dr Louise Millard and Angela the dietician right away, all the while Paige is moaning and looking very sorry for herself. Before even examining her Louise looked at me and said that she didn't like how she looked and we may have to stay for fluids. Bloods were taken and cultures requested.
So once again we will spend the night at the hospital, while she has IVs overnight, she does look dehydrated and is quite miserable, just 3 more doses of dex to go......

We'll probably be at the QA for 2-3 days

Another dismal day for Paige with us giving her syringe after syringe of medicine and my constant assurance that changing her nappy will not hurt. Of course she doesn't believe us anymore :-(
Not much has changed today, she is still very weak and despondent. Her day is spent eating puffs of corn, crying and lying in bed. She can cope with bouts of about 15 mins out of bed and she is exhausted again.
Samuel has been an absolute star in all of this he is extremely sensitive to Paige's inability to have any chocolate, yoghurts and generally any snacks at all. He will always ask "Mummy is Paigey allowed to have this?" or will quickly fill his mouth in the kitchen before going into the lounge if she is there. He is also very affected by seeing her so ill, even said to me on Friday when we were discharged from the hospital

Samuel: "Mummy Paige is never, ever, ever again to have any chemotherapy"
Me: "why"
Samuel: "because it makes her sick and she has to stay at the hospital"

Tonight I asked for his help to distract her when I needed to change her nappy but he has just come out of the bath so he said "Mummy give me two minutes to get ready, ok?" he then rushed over to her room, caressed her head and sang her a song, she still cried so he dashed over to his room to get her a story book........

This shot was taken this afternoon during her 15 mins being out of bed, it was difficult, if not impossible to get a shot of her smiling so I gave up and decided that I would use this one anyway, her pjs don't match because the pants/trousers were soiled and she doesn't like being changed! This an expression that we have unfortunately become quite used to.

We've still got two more days of Dex. Every night I pray for Paige to get better and be in less pain and for me to have enough wherewithal to make it through the day.......

We're Home

What a nightmare week this has been!
Paige's tummy continued to be runny and she became weaker and weaker, by Monday I had carried her around whenever she needed to move without even realising it. Other than that she just lay on the bed motionless for hours on end till she fell asleep. By Monday night I was waking up and checking to make sure she was still breathing.
Tuesday morning she tried to get out of bed and fell down, that was the last straw for me. I called her specialist nurse she suggested that Paige be reviewed by a doctor sooner rather than later. She fell asleep soon after my conversation so I got ready and packed a back for a possible overnight stay. She woke up about noon and was too weak to even speak, so Sam and I put on our super speed mode and was out of the house in 15 mins! On the drive to the hospital I kept checking on her to make sure she was ok. Dr Millard agreed with me that whilst she didn't have a temperature, she had never seen Paige like this and we should start IV fluids and anti-biotics immediately just to be safe. We also discussed her diet at length and in the end agreed that she needed to be completely dairy and soya free.
Of course we were admitted with limited entertainment of the question "how long will we be here?". We were again reminded of how lucky Paige has been to make it this far through her treatment without being ill. Apparently her current state is par for the courses for an intensive block of chemo. Each successive round of chemo knocks then down even further and their bodies are not well enough equipped to completely heal before the next round starts again.

So the way forward:
1. Complete dairy free diet
2. Anti gastric medicine 2 days before the start of steroids, all the days during the steroid and at least two days after the last dose of steroids. This will hopefully reduce the impact of the steroid on the lining of her stomach.
3. Review diet in 6-8 weeks time. 


In the meanwhile Paige has been given a vile milk powder made from amino acids that she refuses to drink. In fact she tasted it and thought it was the straw that was bad, so she tried three different ones and another cup before deciding 'no way mummy.' I tasted it this morning and nearly vomited and that was literally just a drop of it. So it's going to be a difficult couple of weeks for all of us, she's already pointing to the fridge and asking for 'milk' and 'cheese'. As soon as she is strong enough she'll push the stool over and try to open the fridge.

She's still very weak and spends most of her time lying in bed, or snacking or crying. Her tummy seems to be getting better we're down to two manageable poos per day. The good news is that we are at home .......Her next review on on Monday next week. But her neutrophils are ni so if she strikes a temp it's back to the QA for us :-(

Hello Kitty

Paige, enjoying her new toy, a lovely gift from best buddy JoBo. She has been in the hospital for the last three days..this latest round of chemotherapy has hit her hard. In addition to being very tired, it's payed havoc with her digestive system. She has been on a lactose free diet for the last month, but in the last week she had very bad diarrhoea and lost nearly half a kilo. Lisa was so concerned on Tuesday that we called the hospital and Paige was admitted, with an immediate IV to replace the lost fluids, and a course of antibiotics. 

The dietitian and doctors have decided that she should steer clear of all milk and milk-like products (we had bought soya milk, soya yoghurts and Lactofree products). Now only non-dairy butter will be allowed (due to the small quantities). This is shame because she loves the yoghurts, and they are a great way to get calcium in her diet. Now she will probably have to take a supplement. 

I stayed with her last night and today and she is looking a bit better, and eating a lot better. She wolfed down two sausages for lunch! However, she can't decide what she wants to eat. We went through the entire stock of snacks several times today, but only the carrot puffs were a winner. The chemotherapy affects her tastes and I guess that, after each round, everything she liked before tastes different. She ate blackcurrant jam on its own this morning, probably because it has a strong flavour (and is sweet). Given the limited selection of foods that she can eat, we shall have to try and flavour up vegetables with spices such as black pepper, turmeric, cardamom and ginger, the last two of which at least aid digestion.

The course of antibiotics will run until tomorrow, but Lisa thinks she will need to remain in the hospital for another few days. At least we have our own room, but Sam is missing his sister, and his mother. So fingers crossed that she will be home soon.

While we continue to battle Paige's illness, in Barbados yesterday a sailor lost his battle with another. A great sailor, a great businessman and a great guy. RIP Shane.

Still Sick

Paige's tummy was a bit better today in that we didn't have to do a complete strip down and bath, but she is clearly still in pain based on her sad, pained expressions and behavior when we need need to change her. However just when I thought things were getting better as I put her in the car this afternoon so that we could collect Sam from school we had the biggest projectile vomit. Let's just say that her car seat is still on the ground in front of our house after my failed attempt to clean it. Strangely though she was starving right afterwards and wanted to eat more of the same risotto that I made for her! I think that she ate too quickly and it made her stomach upset.
Dr Morgan finally returned my call with an apology late this evening and suggested that we start her with Omeprazole a gastric inhibitor, she also agreed in principle that we could switch her steroid from Dexamethazone to Prednisolone but would speak to Louise Millard on Monday to confirm, hopefully this will provide some relief to Paige, her next round of steroids start again on Wednesday next week.
We're all looking forward to a quiet weekend that is poo and sick free so that my beautiful baby's stomach can heal itself.

Our lives are full of Poo !

Literally, we've been up to our eyeballs and poo and I haven't been able to update the blog. Paige has had a sick tummy since Monday I have never seen and smelt so much bad poo in my entire life. Each change required a complete strip down a bath and new bedding. So a pre-wash, and an extra rinse at 90C later we finally have some clean pjs and bedding again!that the clothing that I kept of course, quite a few pieces have gone straight to the nappy bin!
Her diarrhea and disposition has been so bad that there was some doubt whether she could go ahead with Chemo yesterday. Wilf walked into the room and agreed that he had never seen Paige looking so sad and pitiful before. In the end Dr Deem declared her well, albeit with a very sick tummy and suggested that we should proceed. Of course after Chemo she ate all the food that they brought for her, it was such a pleasant site. When she came home she walked around a bit and even smiled briefly.
Last night and this morning she continued her diarrhea, just lay around looking exhausted. She fell asleep again at about 10.30am and woke up ravenous. Finally by about 4pm, her tummy settled down and she started smiling again, and even gave us cuddles. She ate a hearty dinner and then went to bed. I think that it's the Dex that's upsetting her, unfortunately she has to have another round next week and then again for 5 days every month until her treatment ends in June next year. Oh happy days.
Fortunately for her, her next round of Chemo is next week Wednesday, so she can have a much needed break until then.

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 :-(