Long Term Maintenance Begins!

At last, the road to recovery for Paige is becoming a bit clearer. Although she's been at the hospital again since last Friday, she's looking really well, it's the best that she's been since she's started Delayed Intensification.
Blog's have been limited for a couple of reasons namely that both Sam and I have been sick and Russell has been with Paige 24/7. I've now had a cold for the last week that isn't showing many signs of improving despite the anti-biotics and 'rest'. Poor Sam he's also been sick. He went to a birthday party on Saturday and was sick at the party and all over Jamie's car. The kind father of one's of Sam's school mates (and husband to my friend Juile) who took Sam to the party because I was coughing and spluttering all over the place.

By Sunday he made a remarkable recovery so we celebrated with a water gun, look at the smile on his face

Paige on the other hand was equally as cheerful despite her temperature and she got a slide. It took her less than 5 minutes to get over her fear of the slide. She slid down on her tummy twice then braved it on her bum. Another bit of evidence of the tough matter that she seems to be made of. Of course she's never been on a slide before because there are far too many germs on the playground and I figured that I would look really silly trying to wipe down the slide with an anti bacterial wipe! So here we are with a slide in the middle of the lounge :-)

She also had a stroll in the garden in her wellies, that she put on all by herself by the way. She's trying to water the plants with Sam's fire extinguisher.

So what does long term maintenance mean? For one Paige's hair may finally get a chance to grow back, she absolutely hates being bald and doesn't like taking any pics. It also means that she will no longer have any intensive blocks of chemotherapy........YAY.

Her schedule for the next 15 months or so will be:

1. Vincristine (chemo that may give her jaw and tendon pain) and dexamethazone (the steroid that makes her completely miserable and the primary cause of her tummy problems - me thinks) for 5 days - once every 4 weeks
2. Lumbar puncture - once every 12 weeks
3. Oral chemotherapy everyday, if her neutrophils are above 0.5 at a minimum

So we all desperately need to get better soon, as tonight's blog was again delayed because Sam was sick all over my brand new sheets that I have been saving till Paige's tummy was better - they're just sheets right? but they were a small symbol to celebrate the start of maintenance and that her tummy was well.

Hopefully Paige will be discharged by tomorrow and Russell can finally return to work, he's been home for the last two weeks, doing a fantastic job of looking after his family and especially his daughter. It breaks my heart in the evenings, after Paige has had a bath, changes into the pjs of her choice, and she simply picks up her taggy, puts on her coat and heads for the car with her daddy to spend the night at the hospital. I can't imagine what she must think, but it obviously doesn't seem strange to her at all. Hopefully Sam's tummy ailment isn't contagious or the start of something worse.

So anyone knows where we can get a 'bush bath' in England??

Temp of 38.9C

Yesterday was quite a warm sunny afternoon so Paige and I walked around the pond while Sam had his haircut. Afterwards when we came home Paige's temp rose to 37.9C at 4.30pm. After her bath etc it increased to 38.0C by 8.00pm. So we packed our bags and made the call to CAU. She's still on anti-biotics so we have a tiny bit of leeway in terms of waiting an hour to see if her temp will decrease on it's own. We feel quite certain that her illness is viral and fluctuations in her temperature is expected. The risk of being wrong however has such dire consequences that we must always follow protocol. When the consultant on duty phone us back her temperature had decreased to 37.5C and it was 36.9 by our bedtime so we got to enjoy another night at home.
She woke up this morning happy, hungry and thirsty. Russell has been at home all week looking after the kids and I due to my cold, which was not getting any better and I was slowly loosing my voice. I must say that I was quite impressed with the decision taken by the GP who was very sensible indeed! He suggested that I start on a brown inhaler and he gave me a prescription for anti-biotics. Unlike Caribbean doctors, English doctors hardly ever prescribe anti-biotics unless your are in dire straights. He suggested that I hold off taking the AB because I didn't need then, but that I should speak to Paige's consultant and if she felt that I needed to do everything possible to get better then I should take them.
Paige and Russell headed down to QA for her review with Dr Walker, but unfortunately when he got there she had spiked to 38.9C so there was no chance of them coming back home. We now know the drill so well, so finger crossed results will be back by Sunday and she'll be at home. So our Mother's Day celebrations will be delayed by another week.
When I dropped off their supplies this afternoon she was in good spirits and so was Russell, who unfortunately has had to do some really long shifts in the hospital, we've decided that I shouldn't be coughing all over 'his' daughter!
I never thought that I would say this but I am so looking forward to Paige having her steroids next week so that her body can heal and she can get better, every day I wake up and wish for her bloods to improve and for her to finally feel better and be back to her usual self. Her neutrophils seem to be on the way up now at 0.2.

Good night all

Home again

At this stage I think that I can just copy and paste Paige has been admitted to the hospital again..........

She spent all day Sunday, Monday and was then discharged on Tuesday with a schedule to review again on Wednesday (today) and again on Friday. Even though her cultures were negative she's got a pretty nasty cough and a runny nose, this combined with a suppressed immune system and simply no neutrophils to her name means that she is at risk. Her platelets have also plummeted down to 25 the lowest that she's been since diagnosis, but as of today she seems to have leveled off so hopefully she won't need a transfusion.

Her tummy still isn't great but we have reintroduced soya products on Monday and she seems to be doing ok, it was like Christmas for her on Monday when I opened her lunch box with a Soya vanilla pudding and chocolate milk, she got excited and wanted to try them all at once!

So the plan for the next couple of days is to continue with her anti-biotics at home and watch her closely. We hope that she is able to get over this bug on her own and that her platelets have a chance to regenerate. We'll head down to the hospital for another review with Dr Walker on Friday. Sam seems to be on the verge of being ill as well, he's all bunged up, as am I making it even more difficult for Paige to be well :-(

So we head back to the hospital on Friday for another review

Got Blood?

Paige wasn't a happy bunny again today, she was quite unsettled, unhappy and not herself this morning. So we were quite pleased that we had taken the decision to have her blood transfusion done today. Russell took her to the hospital and all went smoothly with the transfusion, apparently she slept through most of it. By this afternoon she still wasn't herself and her temperature was rising, by 7.00pm she was up to 38C and we made the call and got her there pretty quickly, she just didn't seem right.
So our 'date night' was spent at the hospital tonight, while Kathy stayed at home with Sam. We hadn't planned on going out anyway, but Kathy had kindly offered to look after the kids so that we could go out to dinner.
So the normal drill, she was started on another IV antibiotic which is given every 8 hours, blood cultures were done and we we have to get yet another urine sample to ensure that the infection is sensitive to the new anti biotic. So Paige will be at the QA for a minimum of 48 hours until her blood cultures are back. She was absolutely miserable when the team needed to examine tonight her but she finally settled and fell asleep at about 9.30pm. Russell is staying with her tonight.
I was quite looking forward to spending my first Mother's Day in this country (I've spent the last 3 Mother's Day in the Caribbean) with my beautiful children, but alas that is not meant to be :-(

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.