Cytarabine Round two - Complete !!!!

I am very pleased to report that Paige has completed her four days of Cytarabine and is still in really good spirits!!

Our day started a bit earlier than usual when madame woke up at 2.45am with a dirty nappy; of course, she came into our bed afterwards, and was quite unsettled. When Sam bounded in at 6.30am she was most pleased to see him. Blood was taken at 1100 and by early evening Dr Millard called to give us the results and confirm that Paige had a urine infection which required antibiotics. She also noted that Paige's hemoglobin was down to 6.8 (normal is 12), so she will have a blood transfusion tomorrow at QA, which will take roughly three hours.

So we rushed down to QA to collect her drugs and do another blood test, so that she could be matched for a transfusion tomorrow. The nurses at CAU were very efficient and all ready with our drugs when we arrived. They even did a full set of observations because we were a bit worried about her coughing. Her chest was clear and another review could be done tomorrow if required. All so that we could get to the train station on time to pick up Kathy, who's spending the weekend with us.

Although I was expecting it, I was still quite surprised that Paige needed a transfusion because she has been very active and in good spirits all day today. I think that having her daddy at home keeps her calm and makes her feel safe :-). In the scheme of things she has done really well on her own - this is only her third transfusion since she started treatment 11 months ago.

So here ends another phase of her treatment: she will now have a week off and start her long maintenance on March 26th. Getting to this point is such a relief for all of us, and particularly Paige who probably can't remember what it's like to have a normal tummy or feel well again. We're hoping to start introducing Soya products slowly on Monday and hopefully milk products sometime afterwards, though it may take some time. Any semblance of a normal life will be most welcomed at this stage.

2 down and 2 to go

Starting the day at 6ish every day is certainly giving very loooong days!

Probably an odd thing to say but I was so pleased when Paige woke up this morning and Paige's nappy was bursting with wee and her pj bottoms were even wet. This was a major accomplishment for Paige who for the past two days has been waking up with a completely dry nappy. She of course was very cross with me because it meant that she couldn't wear her favorite pj's, so she had a full on tantrum, which I allowed even though I know it would wake up Sam. At that point I decided that we were going to have a good day!!!
Eventually Paige realsied that I was not going to budge by letting her wear the dirty pj bottoms and calmed down. Things improved after that or so I thought.
Before heading down to QA we needed to collect a wee pee sample from Paige. Poor thing just when she probably thought there's nothing else that they can do to me I stuck a bag to her bits!! The collection of the sample all went quite smoothly, much to my surprise. When we arrived at the hospital, Wilf was particularly pleased with my accomplishment. He had to administer her Cytarabine today because the only available community nurse was ill today. As it turns out it was quite good that we were there because Paige had an odd looking scratch/bruise on the little finger of her right hand that was a bit swollen and Louise didn't like at all. It's was a strange looking bruise that I noticed when changing her. In the end Dr Louise Millard decided that we should start anti-biotics immediately and that I could administer it at home but if there was any increased swelling or tracking I should bring her back immediately. I must admit that I didn't think much of the bruise but was so relieved that Louise noticed it and dealt with it. Also her instructions on what to look for and what to do was so crystal clear, that it certainly made me extremely vigilant.
Her blood results were no surprise, her hemoglobin continues to decline and she now has neutrophils of NAUGHT, which explains why Dr Millard had such a low threshold for the bruise, if it got infected Paige's body is incapable of making any puss to protect it. So far so good, she's asleep peacefully and the bruise seems to have calmed down. I'll administer another dose of anti-biotics tonight and then it will be once daily.

So the lesson for today is that someone is definitely looking over our beautiful daughter, we should not have had to go to the hospital today and neither did we need to see a doctor. However we ended up there and as luck would have it, it wasn't just any doctor but one that we trust very much and who has looked after our little girl very diligently for the past couple of weeks and knows Paige very well. We have met so many special people on our journey with Paige. Even tonight Laura  our community nurse, who'd obviously had a long day and had also worked quite late dropped off Paige's anti-biotics at home, just to save me the trouble of having to go to the hospital and pick it up myself.
So tonight in our prayers we can say thank you for all the special people that have helped us and will continue to help us through this difficult journey and hope that they continue to touch the lives of other parents and children alike.

Night all

1st Day Complete

Today felt like the longest day ever!!

Paige was up early at 6.30ish and was hungry, she wanted everything that she laid her eyes on, of course today of all days she can't have anything to eat or drink because she's having a lumbar puncture under a general anesthetic. Being hungry though meant that she is feeling good. Her lumbar puncture went smoothly and she actually slept for at least 40 minutes, she normally wakes up within 15-20 minutes of coming out. It was quite a short list today, so she had her Chemo by 11.00am but we had to wait for some potassium supplements for her. She's now down to 9.4kgs again today and her blood chemistry showed that her potassium levels were quite low, so we've now started a supplement for her which smells and tastes horrible.
Sam was a superstar today he helped me with all the doors and is so independent that by his second bathroom trip he knew exactly where to go and told me that he didn't need me. He was also quite happy to stay in the parents room by himself and watch TV whilst Paige and I did her review with the doctor.
I expected that when we came home Paige would be tired and would go to sleep, oh boy was I wrong she wanted to watch TV, play, eat, build a tower and pretty much anything that didn't involve sleep. In fact she decided that she needed a pink cup and pushed the stool and climbed on the cupboard to get it herself!

So she had a good day and drank a bit more than yesterday, her appetite isn't so good but she's snacking all day long. Tomorrow we head down to QA for her next dose of Chemo because apparently the only available nurse is ill and not at work!
So three more doses of the chemo to go and she gets a week off :-)

and before we say goodnight, Congratulations to Uncle Kevin for winning Top Advisor for the month of February !!!

Home Stretch for intensive chemo

I think that our day changed with the weather today! It started off pretty foggy and so was Paige, she wasn't sick but wasn't quite well either and looked as if she would throw up at any moment. So I delayed dropping Sam to school and waited it out. By 10ish she looked better as the sun came out so we dropped Sam off to school. Of course Jenny the community nurse was here bright and early again at 8.15am to do bloods, she suffered the third degree again from Sam who needed to know why she only needed one syringe of blood today, rather than the two she took last time.
By midday Paige got even more tired and fell asleep, she woke up screaming after a while because she had done an explosive poo, all over the bed again! I decided today that Paige is truly, truly amazing and she must be made out of steel. Imagine being asleep, waking up to an explosive poo that is all over a large portion of your body. You're then stripped and wiped down with warm cotton wool, halfway through your mother starts running up and down the stairs and speaking on the phone, because your dressing needs to be changed because it's also got poo on it!!!!!!
I kept telling her not to cry and I would change her as quickly as I could and she would respond 'ok'. She lay there quietly, half naked and possibly cold with her arm up so that I could see what I was doing. We sang the wheels on the bus which provided a good rhythm to remove the dressing and keep her distracted. After it was all over I realized that there can't be many 20 month olds that can stay so calm and co-operative during such a stressful event!
She was in fine form by tonight, running around and asking Sam to 'catch me' she even allowed me to tickle her tummy :-) which suggests that it's not so tender anymore.
Tomorrow she has another Lumbar Puncture followed by Cytarabine and this continues for another three days. Her blood results seemed quite low to me but are apparently normal/expected given where she is in the treatment, if she continues to go down, she may require a transfusion sometime soon.
So keep those prayers and positive thoughts flowing as we get her through this final intensive block and hopefully life becomes a bit easier for her over the next couple of months

Not a happy bunny

Paige continues to sleep through the night in her own bed and even woke up at 7.22am this morning, she was a bit happier than yesterday but still not her usual happy self. She however continues to throw up and told us she needed anti sickness medicine even before she threw up this morning! She may not be able to speak but she certainly knows how to communicate, my clever daughter.

This pic was taken just before she was ill, kids just love boxes don't they :-)

this was taken on Wednesday, she wore her swimming costume for the entire day!

We took them to the beach today because it was such a beautiful, sunny and warm day. Sam gained confidence on his scooter really quickly and was zooming around. He's such a polite boy though, whenever there was a crowd walking past he stopped, waited for them to leave then continued. Both times when we got to any slopes on the walkway Russel panicked and Sam just sailed down and turned to stop, it was absolutely amazing to watch. As for madame Paige she didn't want to be on her tricycle but rather her buggy, but then again I did say that she's feeling a bit rubbish today. She then wanted to walk on the beach, initially she was afraid of the water but within 5 minutes she was walking right to the edge of the water and throwing pebbles in. Every time a tiny wave came to her Samuel kept shouting "she's only little, leave her alone".

So both kids had a fun afternoon and are now fast asleep. Paige has neither eaten nor drank very well today, hopefully tomorrow will be a better day for her.

Cytarabine Round 1 - Complete!

Paige continues to sleep in her own bed, but didn't wake up very happy this morning:-(

After having 3 successive days of chemo, there are now visible signs of how weary she's becoming. She woke up at 6.15am and fell asleep again at 7.30 very unusual for her. When she woke up again she was covered in vomit and very distressed. Even Sam was confused and kept asking why she did a 'Domit". It mostly went downhill after that. Her bung was covered in vomit and I didn't have a clue what time the nurse was coming to our house. So I started phoning firstly the Starfish ward and the staff nurse who answered could neither help nor find someone who could. I then phoned the Children's Assessment Unit (CAU), no answer. Then Naomi no answer, but I did get a very helpful assistant. I then bleeped Wilf, no answer, then the consultant, no answer! By now there's a fair bit of steam coming out of my ears. So I tried the Community nursing team again and yes - NO ANSWER. All this time Paige is be becoming more and more miserable and less and less of her usual self. So I phoned CAU yet again and told then that I was bringing her in! I certainly did not want to have a repeat of a very poorly child on my hands and with the weekend coming on there would be a shortage of doctors on site.
I got to the door to leave my house and of course the nurse is about to ring the doorbell. So far we have had some pretty good experiences with the NHS but I have to admit this week has been especially trying with the community nursing team. Poor nurse Rachel, she apologized from the moment she got to my house until she left. I was so completely wound up by then that I had to try really hard to calm myself down.
Paige and I headed down to the hospital and 4 1/2hrs later we finally saw a consultant after Sister Lorraine intervened! The end result is that Paige's bloods are still the same but she could possibly now be constipated and that could make her be sick as well. I said this before and I will say it again.....how much more must this poor child endure.......So we came home and will return to QA for another review on Sunday.
By the end of today, I have decided that Paige is much stronger than her mother, her spirit never seems to be broken but I think that the last couple of weeks have seriously put a huge dent in mine.
Here's wishing for a quiet weekend and a more organized nursing team for next week, because it all happens again starting with a Lumbar Puncture on Tuesday followed by another 4 doses of cytarabine.

When I woke up this morning I thought 'today is going to be a really good day' the kids had both slept through the night in their own beds and they both woke up happy as well. It would have been our first quiet day at home just Paige and I. No hospital trips were planned and Sam was dropped off to preschool. Then the phone rang, the community nursing team did not have anyone that is authorized to do Chemo at home so Paige and I now needed to head down to QA so that she could have have her dose of Cytarabine. Although seemingly a trite issue I was so annoyed... plus it was raining and Paige started coughing again today.
Anyway needs must, we headed down and it was so amazingly seamless I couldn't believe it! Sister Lorraine was prepped and ready for us so much so that as we entered CAU she turned our way from the ward!! She was finished and we were on our way out within 1/2 hour an absolute record for us, leaving no doubt as to why Lorraine is the ward manager!!! She is super efficient and very matter of fact, my kinda people. When I told her how I felt, she said to me 'there's no need to apologize, with the level of stress that you have to deal with if the beans are in the cupboard the wrong way it might tick you off! She certainly hit the nail on the head.

Paige was very happy today, walking around, giving me instructions and asking to watch TV, but not just any old thing only Peppa Pig or Fireman Sam. Her food intake wasn't great, but she also didn't have a poo today. I think that she got smart and realised that if she ate less she would be in less pain when it came out :-) Blood results today showed neutrophils improving and everything else static. It is expected that all will fall again by the weekend, and she will soon become neutropenic again....sigh

On a brighter note both kids went to bed and fell asleep on their own tonight, such progress with sleeping this week, I guess the guy upstairs decided that we should have a wee break after the last couple of weeks.
Anyway another dose of Chemo is due tomorrow, hopefully at home, as Sam is at home for the entire day tomorrow as well. His pre school has had more sick children.
In the end I think that Paige was finally able to have a pain free day today........................thanks to all the positive energy and prayers that was sent her way by all  of our family, friends and well wishers.

Cyclo - Complete

We had a long but pleasant day at the hospital today.

Paige woke up quite happy and walked over to the shower to greet her daddy, whilst Sam was really grumpy when Russell woke him up. Paige was first on the Lumbar Puncture (LP) list today and was out by 9.30am. What happens at the hospital is that all kids due for an LP are asked to be at the hospital by 8.30am and then the youngest are usually done first, which is usually Paige.
By 1040 her hydration started and we were very pleased. Ideally other chemo for outpatients can't begin until the intrathecal (via the spinal fluid administered during the LP) chemotherapy is complete. We also had lots of visitors today, Sarah our CLIC sargent stopped by for a chat and a giggle. Naomi our Pediatric Oncology Nurse Specialist (POONS) stopped by to catch up and steal a cuddle from Paige. We also had a long chat with Mary who was fully up to speed with Paige's recent hospital visits and felt sympathy for her tummy but had seen quite a few other cases as well, one of which required a feeding tube. So all things considered Paige still seems to be ahead of the game with her tummy even though it is extremely painful for her.
She recovered quite quickly from her LP this morning and was very thirsty, by the afternoon she was enjoying the sunshine and smiling brightly, she's actually attached to an IV in this pic

So far so good, she's had a long day and is now asleep, she'll continue with Chemo tomorrow.

Finally a pic of Paige smiling :-)

The team at the hospital today were very attentive and on the ball in terms of getting things done on a timely basis so we were back home in record time - Well done to them for making a potentially difficult day go very smoothly....

Delayed Intensification II.....continues.....finally

We had yet another early start today, but in a good way....

Paige slept through the night in her own bed and sauntered over to our bed at 6.30am because she needed a new nappy. My ever thoughtful daughter of course did not let me lift her onto the bed but rather said no and pointed to her bum! We then had our early morning cuppas in bed and headed down for breakfast by 8.00am. Jenny the community nurse was at our door bright and early again at 8.03am to do bloods. Paige just sat quietly on her own as I got breakfast ready, and Jenny took her blood. This was all closely monitored and questioned by Sam of course:-). He finally went to school today and seemed quite pleased about it.
Paige on the other hand seemed to enjoy having the house, TV and all the toys to herself again.

After lunch we headed down to clinic and once again Dr Louise Millard was really pleased by how well Paige is now, she even commented that this was more like the Paige she knew and was accustomed to. We saw Joseph and Celine at clinic today and Paige was thrilled, so much so that halfway through our visit with Dr Millard Paige opened the door and wanted to leave the room!

Her blood results were quite similar to that of last Thursday's and whilst her white blood cell count has risen slightly, her neutrophils remained static at 0.5. Ideally neutrophils of at least 1.0 is required for Chemo, but given the delay, Louise felt that Paige was well enough and had already broken all the rules so that Mary Morgan may again take the decision to let her carry on with chemo.
So by late evening I got that phone call from Piam Brown saying that Paige will be expected for her Lumbar Puncture in the morning, following by Cytarabine and Cycloposphamide in the afternoon.
It will be a family event tomorrow, Sam will join us in the morning and Russell has taken the day off to help entertain Paige for some of the 5 hours that she will be hooked up to an IV then Chemo then IV again....it's going to be  a tough, long day for Paige, but I think that she is ready and so are we to support her.

Having said that when we came home from the hospital I came off the phone to find her on the window sill saying "catch.....me"

 
The neighbors will probably report me to child services for this!

In my prayers tonight I will wish for Paige to have a pain free week and for her tummy to settle down and cope with this week of Chemo.......

Enjoying our week

Jenny from the community team joined us for a cup of tea and early morning bloods on Thursday at 8.15am , she was worried that she had woken us up, little did she know that Sam, Paige and I had alreday had our first cuppa in bed at 6.30am!
Anyway blood results were back pretty soon since Wilf our oncology specialist is heading off on vacation for a week! Her blood is recovering albeit slowly but they are heading in the right direction, she now has neutrophils of 0.5, so barring any issues on the weekend we should be heading to the Piam Brown Ward on Tuesday next week for a VERY long day of Chemo and hydration and to finally kick off this last bit of her final intensive block of Chemo. I must admit that I was a bit nervous going to bed on Thursday given the last two weeks!

On Friday after early morning milk and breakfast Paige laid out the table so that she and Sam could have a tea party :-). She seems to be really enjoying her almond milk now. By the afternoon she ran out of almond milk and we tried a chocolate milk made from coconut milk, Sam seemed to like it more than Paige and asked for a second cup, but she did give it a try. I must admit it tasted quite nice and had a proper coconut flavor.

Tea party

Her appetite has picked up wonderfully, she's happy, mobile and talkative. She's even managed to keep her poos down to once per day, but she still seems to be in some pain when she is having one :-(

Saturday we had a quiet day at home and just enjoyed watching Paige run around or eat or pretty much anything that she wanted! She didn't seem very hungry today and managed to have 3 poos but I'm hoping it was just a one off and she'll be fine again tomorrow.

Plans for next week include bloods on Monday morning, clinic at QA in the afternoon. Once the all clear is given, she resumes her chemo on Tuesday. Starting with a lumbar puncture in the am, followed by Cytarabine and Cyclophosphamide (Cyclo) in the afternoon. Cyclo is the chemo that requires 1/2hr hydration prior to the chemo itself. Approx 1/2hr for the Chemo and another 3 1/2 hrs hydration afterwards. So approx 5hrs.
Cytarabine will continue on Wed/Thurs and Friday at home.

So looking forward to a quiet day at home again tomorrow, we've decided that it's not worth the risk to take her out.

Home Again

I think that the joy of being discharged yesterday combined with having to look after the kids by myself till 10.00pm, so that Russell could catch up at work, eliminated all chances of the blog being updated last night!

I am very pleased to report that our lovely Miss Paige seems to be on the mend, she's had a good lunch, has kept her temperature down and even managed to be poo free for the last 12 hours :-) She's in such a good mood, this morning I said to her let's take your temperature and she ran off saying 'catch... me'. Tonight when I asked her to take her clothes off for the bath, she stripped put her stuff in the dirty basket, then promptly stepped on the scale to be weighed.

This is her refusing to sleep on Sunday at the hospital at 9.30pm, she pulled the TV down and turned it down

this is a pic of her yesterday morning before leaving the hospital, she no longer likes the camera

and finally Sam giving her a huge cuddle when we got home :-)

Good night to all.....

Home for a short while :-)

Paige was full of beans last night and didn't go to bed till 10.00pm!

Anyway she slept reasonably well, as things considered, namely observations at 3.00am and anti-biotics at 5.15am. She woke up at 8.00am and was all smiles. When Dr Millard saw her, she was quite pleased with how well she looked and said that if her temperature stayed down we could go home for the afternoon and possibly be discharged by tomorrow. Paige spent the morning walking up and down the corridor and riding in the car in the play room. Tracey the play specialist brought her tons of messy stuff to play with too.

Her temp stayed down and we came home. She enjoyed stew chicken and dumplings for dinner and we'll head back by 8.00pm.
Of course Sam's pre-school is now rife with kids going home with high temperatures, apparently three were sent home today, so unfortunately we'll have to watch this space.

Not allowed home :-(

Unfortunately Paige's temperature has remained above 38C and she was not allowed home today.

Russell called home at 9.45am and told me that she was quite unhappy, so Sam and I headed down to cheer her up. She was quite pleased to see us and she did manage some smiles but she soon got tired and a bit grumpy once her temperature started to rise again. Her CRP is back down to 6 but given that she still has a temp the protocol is that another anti biotic be added and new blood cultures are to be done. The blood cultures taken on Friday morning were all negative. As I left the hospital Louise was conferring with the Consultant hematologist at the Piam Brown ward to confirm the next course of action. I think that they are genuinely stumped by her temperatures and want to do right by her.
So I suspect that Chemo and Lumbar Puncture will not be on the cards for her next Tuesday but rather a couple more days at the hospital. She has to keep her temperature below 37.5C for a minimum of 48 hours to be discharged.
So an early entry today because I have to head back to the hospital tonight so that Russell can go to work tomorrow.

Our poorly little girl :-(

Paige was allowed home this afternoon between doses of anti biotics and initially seemed quite well, albeit with a cold and still a bit weak but smiling and happy in her brothers pajamas :-)
After her nap she woke up with a temp again and it continued for an hour later and she was miserable, so Russell and Paige headed back to the hospital at 7.30pm ,she was due back by 9.00pm anyway. Her blood results are back and she has a C-Reactive Protein (CRP) of 31 (normal is less than 5), so there's definitely something brewing, I guess we'll find out when her cultures are back tomorrow. We were hoping that she would be released tomorrow but if she continues with a fever that won't happen.
My poor baby has been through the wars this month and now she's faced with high fevers and being miserable, how much pain and trauma must this poor little girl have, as the saying goes this will all make us stronger, so I guess in the end we'll all be made of steel!

the boys making pasta tonight

Paige eating her pancakes on Thursday morning :-)

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.......