11 December 2012

Onwards and Upwards!

Paige's central line was removed at the Queen Alexandra's hospital last week Monday. The procedure went well and Paige was up and eating soon afterwards. Poor heart was starving and ate a whole bowl of rice! We arrived at 7.00am, she had her chemo via her central line for it's last use, at about 9.00am then waited till her turn in the theatre, which was at 12.30pm, that's why she was so hungry! We were discharged shortly afterwards.

It was also her week of the "Demon Dex", but this time she just ate all day long, she was a bit grumpy but not as bad as previous bouts. At least these were the reports from Russell, as Sam and I headed off to Trinidad on Wednesday morning and returned to England on Sunday morning! It was a fleeting but fabulous trip. Neither Sam nor I wanted to return home to the cold.

When we arrived on Sunday we were greeted with a perky, healthy looking little girl, who has gained approximately 1kg in one week! She actually felt heavy :-). We headed off to the Piam Brown Christmas Party and the kids had a fabulous time. Paige complained when Santa arrived because it meant that they had to turn off the music, she loves dancing. Here she is opening her present with the help of Big brother Samuel.

Her hair also seems to have grown another inch!

She is just such a happy child

Bloods were done by finger prick yesterday and she was not pleased at all! On the bright side however, she has neutrophils of 4.4!, we know that is is inflated due to the steroids but it was incredible news. She resumed oral chemotherapy last night. Next Step is her Lumbar Puncture next week Tuesday.

In the meanwhile we are getting ready for Christmas as well as Uncle Kevin and his new bride Renee, who arrive on Sunday and will be spending the next couple of weeks with us.


1 December 2012

Central Line is going!

When I spoke to Dr Lousie Millard on Monday morning about Paige's line she suggested that we see her sooner rather than later at CAU. One look at her line and she advised that another swab was needed and Paige would have to spend the night! We were prepared for that and Paige was in particularly good spirits so we did. She ran all over the hospital for about 3 hours and Dr Millard realised how much energy she had when she was well! She was discharged on Tuesday and anti-biotics continued at home. By Wednesday the line swab was still positive with the same bacteria  Staphylococcus aureus. So we took her again today for yet another swab with the understanding that if the swab was still positive for the bacteria, 'serious talks' would commence for removing the line.
Of course one look at the line site today and Dr Millard quickly conferred with Dr Mary Morgan and the decision was made to remove the line on Monday morning.

When her line is removed, it may not be replaced. She will have cannulas inserted for the her chemotherapy and finger pricks will be done for blood tests. For us we are now between a rock and a very hard place. Having a central line means easy access to blood, giving IV anti-biotics and doing blood tests. Not having a central line means painful cannulas every 4 weeks and finger pricks as often as every week, BUT lesser chance of recurring infections, and freedom to have a bath and go swimming and so many other things.

So we are schedule to be on the Shipwrecked ward at 7.00am on Monday morning at the Queen Alexandra Hospital, firstly to have her monthly Chemo followed by the Central Line removal under a general anesthetic, and hopefully be home for dinner.

For now, we have plans for Paulton's Park winter wonderland tomorrow, and quite looking forward to it.

Night, Night

25 November 2012

November blues

So many things have happened since our last blog!

Week 1 - ending Nov 6th

We celebrated Russell's birthday and the kids really got into it, decorating the table with balloons and confetti the night before and blowing out the candles on his cake, in fact we celebrated three nights in a row! Paige had her dreaded 5 days of Dex which were horrible for her as it really upset her tummy and she had dirrohea for a couple of days. She is so aware of her body though, that she woke up each time and came off the bed to tell me that she wanted to do a poo. Poor heart it becomes more and more difficult to watch her in pain and to have her vocalise how she feels:-(. On a brighter note she has grown 2.5cm in 4 weeks and her hair is just beautiful, she's now 87cm tall.

Week 2 - ending Nov 14th

We celebrated my birthday, with the same enthusiasm as the week before, by then they had perfected the art of decorating and singing the happy birthday song! By Saturday she started complaining about her chest and  her line site it was quite red. After a visit to the CAU at the QA hospital she was started on oral anti-biotics. By Monday after clinic her neutrophils were down to 0.3 and we started intravenous anti-biotics once per day at home. She stayed reasonably well and in good spirits. So we celebrated Divali for the second time in England but without mummy this time :-( I even did a presentation at Samuel's school on Divali and made sweets for the entire reception 41 kids! The celebration was a huge success, we managed to feed 15 adults and quite a few kiddies, Paige of course wore her pajamas the entire time, hence no photos of her in Divali wear :-(

Week 3+ - ending today!

By Thursday morning at 1.30am she finally spiked and we took her to the hospital by then we already knew that she had an external line infection, hence the continuation of IV anti-biotics. So we were back to the drill of very high temperatures of 40C that took a long time to go down despite Calpol. As usual timing was bad as Russell was due to start an away training course on the Friday morning, so Kathy saved the day by staying with Sam from Friday evening till Sunday. When given options for who should look after him, Kathy was Sam's first choice! By Saturday blood cultures were negative but her line swab was still positive, so we were discharged on Sunday with a plan to continue anti-biotics and follow up at clinic on Monday this week.

Paige continued with a runny nose and cough when we came home and thankfully our new neighbor, who is an absolute angel volunteered to do the school run, despite her being at home with a very sick tooth - Thank you Naomi! She did the school run for three days till Russell came home on Wednesday night. Paige's neutrophils are still quite low at 0.2, and the weather has been absolutely horrendous with lots of rain and wind. Line swab cultures taken again on Monday were still positive, so now we wait and see what happens. She is reasonably 'well' but still has a runny nose and a cough.

On Wednesday she received her "Little Star" award from Cancer research she is so proud of it

Finally today we noticed that her line site is red again and a bit 'wet'. We'll take her to clinic again tomorrow, hoping that the inability to get rid of this terrible infection, does not translate to her needing to have her central line removed!

I was confirmed at The Holy Rood church today and the kids really enjoyed the service dancing to the hymns, since there was a live band there!

So goodnight to all and please join us in prayer so that her line infection is healed........

30 October 2012

Full Dose of Oral Chemo

Samuel's half term started last week Monday hence no update....apologies they've kept us really busy! On a brighter note, following Paige's ability to hold on to her neutrophils, her oral chemotherapy dosage was finally upped to 100% last week Monday.

With regard to her feeding tube, it was agreed by all (us and consultant Jo Walker) that we would monitor her very closely and if her weight dipped below or neared 10.6kgs we would have to consider reinserting the tube. Surprisingly I have very mixed feelings about all of this. Her feeding tube provides that much needed backup for when madame just isn't in the mood for eating. It was always very comforting at night knowing that she was able to get that extra 450 calories. It meant a bit of discomfort for her and an interrupted night's sleep for us, but it always seemed worth it in the end.

We had a pretty uneventful but fluid two weeks as plans changed on a daily basis. Tuesday we were planning to take the kids to Paulton's Park but both Paige and Samuel woke up with the sniffles. Of course with Samuel being at home Paige did not have any naps during the day and decided that she would spend the entire day on Saturday sleeping. She woke up or rather opened her eyes at 8.30am, downed tons of apple juice then went back to bed and woke up at 10.30am. Unfortunately she missed "The Elves and the Shoemaker - Boofy" a premiere at the Point Theater that was sponsored by the Rainbow Trust for their families. She was asleep again by 1.30pm and woke up at 5.30pm. Again missing an outdoor Halloween party.....I didn't mind too much cause it was bitterly cold on Saturday.

Finally things picked up on Sunday and Russell enjoyed a day of sailing (his early birthday present) and then we all went to Julie's house dressed in costumes for hotdogs and then onwards to the fireworks display. Paige absolutely loved both the social event and the fireworks. It's so reassuring to see her just mingling and running around with kids her age who are healthy :-) When we were outdoors looking at the fireworks I stupidly asked "Paige are you warm enough?" her response "I'm trying to watch the fireworks mummy...."

Today we spent a really lovely afternoon trekking through the woods from Bere Forest to 100 acre woods with mums and kids from my first time mum's group. We've now known each other for four years and the boys do get along quite well with each other, a welcome benefit !

Paige's neutrophils are still holding at 1.4 after a week of full dose of her Chemo, and she is scheduled for her Vincristine and Dexamethazone next week Monday. These 4 weeks sure do roll around quite quickly!

See you next week - look at the gorgeous hair !!!!

17 October 2012

Bloods are still good!

Tick - we made it through another week of Dex! Unfortunately the steroid Dex did not stimulate Paige's appetite and she actually ate less than normal. Additionally she clearly experienced jaw pain from the chemo vincristine that she had on Monday because she was tearing through quite a few lollies and complaining that her mouth was hurting. By the end of the week she was particularly grumpy and insomnia set in. On Thursday she woke up at midnight asking for milk and bread. She then wanted to read a story and play in her room, this continued until three am....yawn.  On Friday night she woke up again at 12.30 and didn't go back to sleep till nearly 4.00am. Fortunately she slept through on Sat but then the same issue on Sunday and Monday night. Dr Millard has advised that Dex can make her hyper so that we should give her the evening dose by 4.00pm and maybe she'll be less hyper at night.

Despite all of this, she did manage to get into trouble early in the week with my lipstick!

We enjoyed afternoon tea on Saturday, again at Standstead house, a special treat since Aunty Kathy, Paige's god mother and Russell's cousin came to visit for the weekend from London. The kids loved having Kathy here and it was great to have an extra pair of hands after Thursday and Friday night.

Here she is on the 'big slide' for the first time I think! She loved it, 'mummy that was fun! can we do it again?'

Bloods done yesterday were without incident and her neutrophils are holding steady at 2.1. So we headed off to ballet where she actually followed the teacher's instruction for the first time. My eyes welled up when it was her turn and she walked across the floor on her tip toes :-).
This was taken before class she wasn't too impressed with me because she was trying to watch TV.

In the end she smiled though

Finally her weight has dropped to 11.1kgs this morning so that we will monitor her over the next week and if there is no improvement in her weight the feeding tube may have to be inserted again:-(. She's been so happy without it and smiles so much more.

Again, we take life one day at a time and enjoy the good moments........

9 October 2012

Break from feeding tube

After a week of being off her feeding tube Paige has eaten very well all week and had maintained her weight! In fact she's even gained a tiny 0.1kg, a step in the right direction. With that good news in hand it has now been agreed that we will not insert a new one unless she needs it, we know it works and it can be inserted quite easily.....

This week at clinic she had Vincristine and reacted quite strangely when it was being administered, Wilf suggested that now that she is well her taste buds may have changed and she may be able to taste the chemo, apparently other kids say that it tastes like metal! She is also due her week of the dreaded dexamethazone this week! Good news on her blood results, neutrophils have shot up to 2.0, so that her dosage of oral chemo has been increased to 75%.

She continues to get into ALOT of mischief which revolves around opening taps and filling her toys with water or using the bathroom stool to get into my make-up. This time she chose a brand new deep red lipstick and was able to apply it in about 10 seconds or less!

as you can see she is quite proud of herself, incredibly difficult to discipline with a face like that :-).

She now has a better routine, she has ballet on Mondays and playgroup at Sam's school on Tuesday mornings, we've even arranged for our Rainbow support worker to spend some time with her and without me or Russell. We also managed to attend a family service at church on Sunday, a first for us as a family. So all things being equal we can continue to enjoy time our beautiful daughter and her current wellness, long may it last.

It's now been a week since I have handed in all my equipment to HSBC and said my goodbyes to my colleagues and my career. Even though I haven't been at work since Paige was born it was quite difficult to absorb that I am now unemployed and full time carer to Paige and mum to the kids :-) Some might even say that I was defined by my career, this will be the first time in 22 years that I am deliberately unemployed

Good night to all....

2 October 2012

Two year review - Passed!

Unfortunately Paige didn't have such a great weekend....she slept for 4 hours on Friday and Saturday. Then woke up on Sunday completely lethargic and spent most of the day sleeping ..... poor heart she must have been fighting something and fought it off or just feeling the effects of her increased dosage of oral chemo, which is causing her neutrophils to fall. On the bright side we have decided to give her a break from her feeding tube which was pushed out when she was sick, so it is quite lovely to see her face again :-), we just need to work on her smile now.

Her blood results this weeks shows a small decrease in her hemoglobin and neutrophils have fallen from 1.2 to 0.8. Apparently when teenagers have a fall they have complained that they can't get out of bed because they feel so crummy, so maybe the drop off for Paige made her tired? Maybe she'll tell us next time.

We've been quite busy with the house redecorating, the new kitchen just needs one final door to be complete and Paige no longer has a baby room, but rather a 'big girl' room ,which she seems quite pleased with, in fact she has said 'mummy I like my new room !"

Here she is making a cup of tea in bed and actually said 'mummy can you take my picture?'

She helped with the stickers, but refused to stay in the pic!

Samuel on he other hand is a bit upset that his room isn't as 'handsome' as Paige's. He's doing really well at school and has alreday received a gold sticker from the Head Teacher for his creativeness with a dinosaur and a 'Well Done' card for his model building. He now plays both Rugby and Football and loves both of them. He's also off to a birthday party this weekend for one of his classmates. I must say that WestHill is quite a social school!

Ballet continues to be a challenge for Paige, but she was much better this week, she also thoroughly enjoyed her playgroup at WestHill this morning, it's quite good to catch up with the other mums. Next week another round of Chemo and steriods are due, we'll also monitor her weight quite closely and a decision taken as to whether to reinsert her feeding tube will be taken next week.

Paige also has her two year review with our Health visitor Lorraine today and she passed with flying colours, she has met all her developmental milestones and Lorraine was quite impressed with Paige's speech and ability to understand and communicate, in fact when Paige was asked to build a tower with 8 wooden blocks Paige responded 'that's easy peasy' and proceeded to build the tower without any toppling over. Apparently many kids her age can't do that. So needless to say I was quite relieved to be reassured that she is doing so well despite her ups and downs this year :-)

Here's looking forward to an uneventful week.....

26 September 2012

Lumbar Puncture today

Life seems to be going by so quickly now, it's been two weeks since the last update....

Paige continues to grow and develop very well, she's now up to 11.8kgs and has maintained a neutrophil count of 1.2. She dipped last week from 3.5 to 1.9 so the decision was taken to keep her on 25% of her dose of oral chemotherapy mercaptupurine and follow up bloods were done yesterday. Given that she has held her own over 1.0, her dosage has now been increased to 20mg which is 50% of the required dosage.

Testament to how well she is doing is that she never once complained today even though she was required to fast till she was taken in at about 10.45am for her lumbar puncture, she is no longer the youngest or the sickest so that she now has to take her place in the queque and is no longer given priority... tough call. There used to be an easily visible method to the order but now it all seems unclear. I guess it's a good thing that she is now well enough to take her place in the queque.......look on the bright side right? In fact after her LP she slept for at least 45mins and was smiling when the nurse brought her in to us in the parents room. She was ravenous though! So it all went without a hitch today. Dr Morgan though is still not convinced that we have gotten rid of the bacteria in her line and suggested that the next time that there is a problem that she would be minded to remove the Central Line.

We have continued to do fun things and Paige still adores her baby, here she is taking her to Marwells

baking bread with daddy, in the new kitchen

trying out her new scooter...she was scooting in the kitchen on Sunday and I said to her "Paige pls don't scoot in the house. Her response "don't worry mummy I know what I'm doing"

and lastly decorating cookies on Sunday with Samuel, she was so busy that she refused to look up at the camera

She does get into a lot of mischief though. Samuel continues to really enjoy his new school and has started both Rugby and football, which he absolutely loves!

In terms of Paige's treatment her blood will be tested again on Monday and a decision taken as to whether her dose or oral chemo should be increased or held at 50%. Her next round of chemo and steroids is due on October 8th.

Good night to all.

10 September 2012

We have more Neutrophils!

If I do say so myself, Paige is looking really good, and she has so much hair and beautiful skin.

We decided to take advantage of the recent spike in neutrophils and take the kids to Marwell's Zoo. Since seeing Joanne with baby Ciar, Paige is now even more fascinated with babies. She now takes her dolly in her own play buggy everywhere! Unfortunately we took both baby and buggy to the zoo on Saturday. Paige insisted that she had to push along the buggy at her own rate and direction. There was simply no negotiating with her. Of course it all ended in tears with her screaming and rolling around in the grass while all the other families stared at us. Clearly the terrible twos are in full gear! What it also means though is that she must be feeling fantastic. She hasn't had oral chemo for about 6 weeks and neutrophils for about 4 months! In spite of her tantrums though, Paige did manage to pick up dolly, climb onto her own buggy, and hold dolly in the air over the wall, so that dolly could see the penguins :-)

On Sunday we braved it again and it was much more successful, the kids had a fabulous time and Russell and I were able to relax and enjoy the day as well. The best part of the day for both Samuel and Paige were rolling down the hill in the play area!

Today Paige had her appointments with the optician and orthoptist, and I am pleased to report that her eyes are working well for her age and she does not require glasses :-). Even better news is that her neutrophils are now up to 3.4 and Dr Morgan has given the go ahead for her to resume oral chemotherapy, but at 1/4 of her regular dosage initially and then review her blood count again in a week's time. The general feeling is that Paige may only need half of the required dosage for the duration of her maintenance. She also had her vincristine today and started her five day course of Dexamethazone.

Tonight we also tested her with lactose free dairy and so far so good.....In other news big brother Samuel has started his 'big' school last week Thursday at West Hill Park, and by today didn't want or need us to stay with him, when I picked him on after his first day he said "Mummy I love it here, I want to come here every day!" by Friday afternoon we were heading over to the playing field rather than the car. So it's safe to say that he has settled in quite nicely.

All in all things are looking up....finally but as usual things can change very quickly so we live and enjoy the good moments as they present themselves.

5 September 2012

Big girl with neutrophils

Paige has grown up so much in the last couple of weeks, she tells me what to do such as "you stay right there mummy" and essentially orders us all around.....She's also got so much hair that we need a brush :-)

Also finally for the first time since June she has neutrophils of 1.3, what a relief, she's been neutropenic for such a long time that she probably feels fantastic. We've also reintroduced some lacofree cheese yesterday and today and so far so good, she seems to be tolerating it well. We've also changed her feeding routine so that she had an overnight milk every other night. This other that giving us a good night's sleep on alternate nights, also stimulates her appetite if she misses a feed. She is maintaining her weight at 11.4kgs and we're hoping that it will increase even more with the re introduction of dairy (but not lactose). The feeding tube will probably stay in until the end of her treatment as a back up for when she becomes ill or her eating is disturbed for any reason. Both Russell and I have made our peace with this and most of all Paige seems undisturbed by having the tube in.

Her four week cycle rolls around again next week with a shot of vinctsitine and 5 days of the Demon Dex...stay tuned

August 2012...

So many things happened in August that I never had a chance to update the blog :-).

Samuel 'graduated' from his pre school Buttercups on August 1st, he is such a lucky boy that his mama and cousin Darien were both able to attend, along with Russell, Paige and I :-)

On August 3rd - Samuel and Paige were christened at the St Peter's church by vicar Susan Allman, it was a very special day for all of us. We were joined by family and close friends at a bespoke ceremony, vicar Susan did a very apt sermon and the day's events were captured by our photographer of choice Celine. This is one of my favorite pics with the kids taking the light into the world. Both Paige and Samuel looked so beautiful......

On August 10th Paige attended her fist taster ballet class, which I think was a bit overwhelming for her but she did some minor bits. She'll start the autumn term on September 10th. I figured this would be slightly easier to cope with than swimming! I am determined that she is able to have at least one activity that doesn't require any medical staff.

On August 11th we said goodbye to grandma and Darien who spent an amazing five weeks with us, the kids certainly enjoyed having then around, and it was wonderful to have so many extra pairs of hands, not to mention all the quality time that we all spent together....we'll miss them terribly :-(

On August 12th Uncle Richard, who is also Paige's god father arrived to spend the next three weeks with us. Paige was treated to her first afternoon tea at Standstead house and Richard took some fantastic photos of us. This was during a week of the demon dexamethazone, which is clearly not as dreaded as it used to be. Paige loved being able to run on the grass freely, something that she really hasn't been allowed to do either because it's been too cold or I'd been too afraid to let her run wild for fear of picking up any unhealthy bacteria!

Her neutrophils by this stage had fallen to 0.3 so that chemo has ceased and we were due our holiday .......

On August 20th we set off on our journey firstly to visit Russell's Uncle George in Shrewsbury. Paige had been signed off by the consultants and we had a hospital within 20 minutes of each stop that had alreday been notified (by our specialist nurse Wilf) that Paige would be in the area. As we were due to set off she was a bit warm but never got hot, (I sat in the back seat and took her temp every 45 mins!). The kids loved spending time with George and June at their lovely home. It's always great to see how quickly the kids warm up to family, even if they are meeting them for the first time.....George is very unique individual.

We were enjoying the visit so much that we didn't set off for the Lake District till 7 pm, we got there at 10ish and both kids were still wide awake :-) We spent four days there and by Day 4 Paige had developed an ulcer on her tongue... and we took her to be checked out at the Lancaster hospital....lets just say that given the choice I will NEVER take her to that hospital again!! Anyway the good news was that she was fine, but her neutrophils has fallen even further to 0.2, but again we were advised that she was clinically well and we could continue on our journey to Scotland to visit Joanne and her new baby boy Ciar.

Sam and I took a train to Glasgow, while Russell, Richard and Paige drove. Her ulcer kept getting worse and you could see that she was uncomfortable when the Difflan spray wore off. It didn't stop her from enjoying being with her cousins though! Paige was completely smitten by Ciar, she held him and would stroke his cheek saying "don't cry little one". Both Joanne and indeed Ciar were very patient with Paige...

Unfortunately by Sunday morning Paige had a temp of 37.6C under her arm and 38.2C in her ear, we made the call to the Royal Hospital for Children and headed down, knowing that we would be there for the next couple of days. By the time we got there she was 38.9C and bloods were being done, along with anti biotics, paracetamol and a room was already assigned. We spent the next 5 days there on the "Scheillion Ward" a specialist hematology centre for children. Of all the stops for her to be ill, this was absolutely the best place. Paige was EXTREMELY well looked after by a team of doctors and nurses that even I couldn't find a single fault with! They were very good at what they did, along with being very thorough, and sensitive to Paige's needs. They also provided free accommodation for Russell and Samuel at a CLIC house a mere 2 mins walk away from the hospital. All of Paige's blood and line swab cultures were negative, and she did not present with any viral like symptoms so that her high temperatures of 39.6C which didn't respond very well to paracetamol remains a mystery. She was discharged last Saturday morning at 10.00am and we made a fast exit to Fareham. 8 hours and 5 pee breaks later we were safely home and she was absolutely fine, she even managed a 4 hour nap on the drive home :-).

So all in all a very eventful and busy month for us, with lots of firsts and spending time with our loved ones....

23 August 2012

I've got hair!!

Uncle Richard's Canon SLR has been very useful for capturing some great moments in the sun!

31 July 2012

Peppa Pig mania

Paige is completely smitten by Peppa Pig she watches it for at least an hour every night, has stuffed toys, pjs, cutlery, puzzles and even an umbrella and raincoat. I am now 'mummy pig' and Russell is 'daddy pig'. My mother is 'granny pig' and my poor nephew is granddad pig :-). Her famous ask, "Mummy one more peppa pig then no more, I promise!"

We took them to Paultons Park last week Thursday and they had a fabulous time. Paige woke up and says "Mummy are we going to Peppa Pig's world today?" she even has a favorite ride the helicopter ride!

She particularly loves having a lolly though! Oh notice the Peppa Pig sandals

She's looking and doing so well now, she's steady at 11.3kgs and her hair is growing like a super strong weed :-) She's fiercely independent and does her own washing......here she is loading the washing machine

Her bloods however are fairly static at 0.6 Neutrophils for the last two weeks. New blood cultures were done yesterday and we continue to monitor her like a hawk after her line has been accessed.

We're busy getting ready for the double special christening that is planned for this Friday for both Sam and Paige. The kids are quite lucky to have their mama and cousin Darien here for the special event. Paige will have both her God Parents present. Richard, my best friend from Trinidad who arrives tomorrow, and the lovely Kathryn (another Trini) so Paige is clearly blessed all around! Unfortunately for Sam his god parents won't be able to make it Joanne (Russell's sister) is 9mths pregnant and actually has a due date of tomorrow and Kevin (my brother) can't be here till Christmas. We'll also be joined by a select few close friends. We're all quite looking forward to it!

From now on I'll try to update the blog at least weekly after her bloods are done.

Good night to all.

24 July 2012

three weeks

So much has happened since our last update....and my entry of July 9th that got accidentally deleted

Paige grew a literal zoo in her line, so much so that I can neither pronounce nor spell the bacteria that grew in her line, it starts with S and sounds like a dinosaur :-) The particular bug that her line has attracted is apparently quite difficult to get rid of so she spent a total of 10 days at the hospital and was only discharged on July 12th. This amazing little girl is so flexible and can accommodate anything. Due to the infection she had to have a cannula put it and that didn't stop her at all she just carried on and adapted to having the use of just one hand at a time. In fact one day when the nurse came to administer her anti-biotics, Paige said to her "be careful, it's very delicate....". As u can see from the pic, it's got quite a large support plinth.

Paige had experienced septic shock on the Monday July 2nd when she became ill, it has always been one of my greatest fears. Luckily I knew something wasn't quite right and we took her straight down despite the advice that I received to wait with her at home. Luckily she was treated quite promptly and efficiently and she recovered quickly. So the combination of the nasty infection and the fact that she was so ill upon admission meant that Dr Morgan gave strict instructions that she should remain in hospital for at least 10 days and only be discharged if she had negative blood cultures. Dr Morgan always tells us that she keeps a close eye on Paige, and now we know for sure since Paige was at QA and she was still calling the shots!

When Paige came home she was finally able to enjoy spending time with her grandmother and cousin Darien. We celebrated with a weekend at Hannah's Holiday home, on Hayling Island which was kindly donated to us for the weekend July 13-16th. It was great for us to all spend some time together at last. The kids had a fabulous time! Of course it rained all weekend so we spent a fair amount of time indoors!

Paige had her 4 weekly dose of Vincristine on Monday July 16th, followed by her delayed lumbar puncture on the following Tuesday at Piam Brown. Everyone at PB was so pleased at how well Paige looked :-) Paige tolerated waiting her turn like a big girl and after the LP she actually slept for a full hour! Dr Morgan has advised that we keep a close watch on her after her every time her central line has been accessed because of her recent infection. Her neutrophils are at 0.7 and if her general blood results do not recover as well as Dr Morgan expects, it may mean that her line will be removed....so we will watch and monitor! In fact after her chemo on Monday we had to stay at the hospital for an hour afterwards, upon leaving I asked for her temp to be taken and it was fine. Then we got some much needed KFC and I though she felt warm so I pulled into a car park and checked again, she was still fine. When I relayed the story to Wilf our specialist oncology nurse, telling him that I felt like a neurotic mother he simply said "Lisa you are doing all the right things, she is your child and you don't want any harm to come to her. Keep on doing all that you are doing." I felt much better after that :-)

Paige continues to astound us with her extensive vocabulary and numeric skills, the lovely Miss Paige can now count to 13 and at least 3 in French. This is of course was a feat accomplished by her big brother who has taught her to count. Samuel can now count to 20 and at least 10 in French!

On Sunday we went on a Teddy Bear hunt, which the kids thoroughly enjoyed at the 100acre woods. Below is Paige with her prize after finding all the bears, her bally ball as she calls it. In her lovely dress, gift from Uncle Kevin after his trip to St Maarten......

After the hunt she reallly enjoyed being on the swings, another first for her Samuel said "mummy Paige and I are like batteries in here!"

Words cannot describe how it felt, it was sooooo good to be out and about and to be able to do 'normal' things just like a regular family....and thanks to our avid photographer Darien we even have a family photo :-)

And finally we aim to enjoy the Sun as much as we can this upcoming week. Paige's blood results are static but we were told to expect that. She continues to have her nightly feed and is actually up to 11.3kgs this morning yeah! She also now has a beautiful mane that can be shampooed :-) I nearly cried when I shampooed her hair for the first since she's been diagnosed time last week.

We kicked off this week by finally moving the garden toys into the garden and the kids are having a great time, especially since grandma (or mama as mummy likes to be called) and Darien are here.

Looking forward to the warm weather this week and all the barbques that I am sure that Russell will be preparing :-)

Good night to all

3 July 2012

Back in hospital

On Monday morning Paige had her routine weekly bung change and blood test, but soon after her temperature spiked. We called the hospital but did not wait for the test results to come back - Paige looked unwell and the most likely cause was a line infection. In such cases, getting to the hospital ASAP is the best call. Sure enough, her temperature went as high as 39C and her skin was pale and blotchy. The doctor was worried enough to classify her as "high dependency". They started her on Meropenem and Teicoplanin and took some more blood for cultures. She was also given emergency fluids.

It took less that 24 hours to confirm that there was an infection in her line. This is common when a foreign object remains inside the body, but thankfully we had so far escaped this fate. The bugs live in the line and, whenever it is accessed, they are flushed into her blood and thus around the body. The initial catalyst was the blood test on Monday, and Paige's temperature also spiked every time the antibiotics were administered.

The solution is to stop using the line, while "locking" a dose of Gentamicin in it. This was done today. The Gent has to be replaced every day for the next ten days. Hopefully the first dose will kill most of the bugs, as we need to flush her line before the Gent is inserted. 

In the meantime, we still need to administer the antibiotics, and so Paige has been fitted with a cannula. This is the third time in her life that poor Paigey-Lou has had one of these. The first time was just after birth, when she was at risk of a staff infection. The second time was, of course, just over a year ago when she was diagnosed, before the line was put in. Needless to say, it is not a nice experience. The fitting itself was painful, but every time the drugs are administered, it causes an unpleasant sensation in her arm, one I have recently experienced during a CT scan. 

Nevertheless, Paige is a trooper. I spent the last 24 hours with her while Lisa took care of Sam. Her skin very quickly returned to its natural lovely shiny brown! In between the temperature spikes, she is happy and active. We hope to be home by Thursday.

Making pizza

14 June 2012

Happy Birthday Paige!

Celebrations for madame's birthday started last week with her new house, I must admit I wasn't sure about a house this size, but she absolutely adores this house!

She's also been feeling fabulous and belted out some tunes for me :-) you will notice that the feeding tube is off and that's because it was her 'day off' when the third one came out in 6 days

This week has been rainy and as Paige now selects her own clothing she decided to dress up as a 'ganster' complete with Sam's hat that she put on herself, this was taken yesterday afternoon. Oh that ball was a gift from her Aunty June which she hasn't put down since she got it.

As for today's celebrations, she started with 4 gifts from her Uncle Richard, who spoils her at every opportunity and 2 more from aunty Joanne, she was all Peppa pigged out :-). Each gift is accompanied by a gulp and 'thank you'

Later on we had a small party for her with some of my friends from my mum's group. Paige of course was dressed in her Mini Mouse costume, the perfect gift from her Aunty Freddy. In this pic though she's actually sending a BBM to her Uncle Kevin.

It was so wonderful to have friends over for a cup of tea and some cake. Most of all it was incredible to have three screaming four year old boys running all over the house and Paige keeping apace with them. She certainly holds her own and is not afraid to assert her authority over her toys, regardless of how much older or taller the boys are!
In this photo Sam is giving her instructions on how to blow out the candle, little had he realised that she needed no help whatsoever!

She's now asleep clutching her Peppa pig stuffed toy in her Peppa Pig jammies, after having dinner with her peppa pig cutlery...you get the drift. I think that she had a wonderful day, and my fears of her not being able to cope/socialise with many children around her is slowly dissipating.

Next we have celebration number two on Saturday with a small BBQ.

Good night to all.

9 June 2012

New feeding tubes

Life continues to be pretty 'normal' which is great for all of us. Paige has been hospital free for a month now, which is an absolute milestone for us this year :-) At last count done on May 29th her neutrophils were 2.0 ans all others good. She however has had no shortage of visits from the community nursing team.
I believe that I have mentioned before that she changed her clothes quite frequently! In so doing she managed to rip out her feeding tube on Tuesday morning, luckily one of our favorite nurses Laura was due to visit so that she was able to insert a new one. Although I think that secretly Paige just wanted to look special because we were due to have lunch with my one of our friends Sarah. She did look fab without the tube I have to admit.

Unfortunately she had a really big vomit on Wednesday night and the new tube fell out in the process so that it had to be replaced again on Friday (I managed to negotiate a 24 hour reprieve for her) this time by Jenny one of the kids favorite nurses, who was as traumatized as Paige after the event! Paige was fine as soon it was over of course and having a laugh with Sam. Later that day Paige received her first birthday pressie which was pretty difficult to hide since it's a playhouse, which she has now furnished with her cooker and some of their stools, it's safe to say that she loves her present and kept saying "thank you mummy for the entire 1/2 hour that it took for me to put it together....pic to follow

Also today the kids received a package from Tonya Archer, Russell's cousin who lives in Canada, she always sends the kids the most thoughtful pressies since birth. Today of course was no exception and they were wearing the clothes from the moment it came out of the package until bedtime. Paige got some beautiful hairbands in orange, turquoise and white, after trying them all on she settled for the white. Sam actually ran out of the toilet to get his and managed to put on the T Shirt before he even put his trousers on, (that's what he's doing in the photo) and as you can see from the lack of colour co-ordinations they just put the new clothes on over their existing ones!

A closer look at the new stuff... Paige now has quite a nice fluff of hair growing that is so soft but she still doesn't like taking photos

On another note we managed to miss Russell's family reunion last week Saturday June 2nd, because Russell had a minor but very necessary procedure done, but thanks to his Aunty June there was a private celebration so that we met the ones that traveled from afar namely Uncle Johnny, Aunt Angela and cousin Karen. Within minutes of meeting Karen the kids left us and played with her jumping all over her. Hopefully Johnny will send us some photos soon :-) we're weren't expecting to meet him. They postponed their plans for the day so that they could meet Paige and Sam, a great time was had by all on that afternoon, and it was so good to be with family again. Russell is recovering well and being looked after by Sam, Paige and I, he couldn't possibly ask for more !

Good day to all.

27 May 2012

Happy Birthday Samuel

Samuel had his birthday party at Fairthorne Manor along with his cousins Alex and Scott, 11 other friends from his pre school. So 15 kids altogether! It was a fabulous day, the weather was gorgeous and the co-ordinators did a fabulous job. The kids enjoyed a treasure hunt followed that landed them with goody bags and sweets!

Followed by an obstacle course

then tea and of course a fire engine cake!

Little Ms Paige was allowed to roam free and do as she pleased, of course she refused to pose for photos!

Sam at home after a nap and loads of pressies!

A good day was had by all I think :-)

Happy Birthday my precious boy...