16 December 2014

Wish granted to see Santa Claus at Lapland

Our Magical Sojourn Begins
Day 1 – December 9th, 2014

First of all a massive thank you to The Make a Wish Foundation who granted Paige’s wish to see Father Christmas/Santa Claus
Her wish was granted last year, but Russell and I both felt that it was too soon after the end of her treatment and we wanted her immunity to be fully recovered to be able to withstand the arctic conditions. We also thought that at 4.5 years she would enjoy it a bit better and I have to say we made the right call! We had quite a seamless start to the journey. Imagine being greeted at the Gatwick airport by the BA staff who actually comes out from behind the counter to say ‘hello Paige how are you today?’ 
There were endless smiles all around, as the families checked in. Of course the VIP treatment began as we were seated in row 2, on the airbus. Whilst on the airplane in preparation for Lapland after a nice hot meal, imagine singing Christmas songs! Quite a bizarre but fun experience indeed.
When we landed at the Rovienemi airport, we were greeted by the elves and sent onto our allocated coaches. While on the coach we met Tyler our guide for the next four days and Grant his assistant. We listened to the Santa story on the coach. The story introduced Santa’s special elves, who featured throughout our magical journey. 
Snowy Bowy - makes all the bows for the presents, 
Tricky Dicky - makes alot of mischief

Speedy Sam - delivers all the presents,

Noisy Nod - makes a lot of noise, and carries a bell

Wendy Wood - makes all the wooden toys

Corporal Candy - makes all the candy. 
More about these elves later. We were quite lucky with the weather it was only -1C when we arrived, apparently it was -25C, same time last year. On the way to the hotel we crossed the Arctic Circle within 5 mins and we were officially in the North Pole. It was pitch black, of course as daylight ends at 1.25pm. Everywhere and everything was covered in snow, absolutely stunning! Just before we arrived at the hotel we were greeted by the special elves Snowy Bowy and Tricky Dicky. We also learnt the song In search of Santa or more easily the ‘Elf Song’. We collected our snow suits/boots and headed to the hotel for dinner. The kids wanted to play in snow immediately, and did I mention it was snowing..........

The adventure begins
Day 2 - December 10th, 2014

After a good night’s sleep our day started with Husky mushing! We had a 5 mins instruction session them we were off. Of course it’s about 9.30am so still quite dark. The huskies were very noisy and raring to go. Each sled was pulled by 6 huskies. Russell and I took turns, ‘driving’ and the kids sat in a sled. I have to say it was an absolutely awesome experience both as a passenger and as a driver! Driving was hard work, especially as I did the downhill bit! The kids absolutely loved it and they were not even remotely afraid! 

Afterwards we visited the kennels and the new babies that they had. Surprise, Samuel wants to be a husky trainer - but he'll have to wait another 12 years at least.

One of the babies

We also enjoyed some warm up games with Speedy Sam. It brightened up a bit by about 10.30am. Then we were off for a reindeer safari. This was two per sled so Samuel and sat together, next to this lovely creature.

It was quite a peaceful ride through the woods which was simply beautiful, as again all the tress were covered in snow and there was snow as far as the eye could see. Oh I forgot to mention that it was snowing from the moment we entered the coach at 8.50am and hadn’t stopped yet!

After the Reindeer safari, we were treated to some warm berry juice and the kids had a chance to feed the reindeers. Another of Paige's favourite activities. By now everyone was getting hungry so we went off to lunch. 

After lunch we rode, two by two snow mobiles or skidoos as they are called in Lapland. Again a very powerful machine, but quite a rush for us all! Afterwards we met Wendy Wood and Snowy Bowy in the Elf house. Mrs Claus was also there and gave us some of her yummy cookies. By now the kids are not even remotely tired because they are having so much fun!

Mrs Claus, with some of the elves at the back

The day still hasn't ended, next stop tobogganing in the dark! We then met Noisy Nod who seemed to recognise Paige’ and he started playing with her pulling her around in her sled then he took her back up the slope and came down with her J she was so pleased! Then she tried a hand at the kiddie skidoos and turned out to be a really good driver, of course she didn't want to stop or maybe hadn't quite worked out that she needed to let go of the accelerator! At the end of the day we went to the ‘Merry Elf’ a family pub, for further kids entertainment and Russell and I enjoyed some quiet time and much needed alcohol. Have I mentioned that every time we get on the coach we all have to sing the Elf song? We all had a solid 12 hours sleep that night! The favourite activity of the day was unanimous – Husky Mushing!!!! Samuel also wants to become a husky trainer, he has a bit of a wait though – 12 years. No luck today though we haven’t found Santa L

Rest Day
Day 3
We started the day Tobogganing at a nearby slope, 

both kids mastered this quite quickly doing special turns, going down on their butts or their fronts. 

I tried it as well and must admit it was a lot of fun! Afterwards we built a snowman. Really hard work I thought, so Paige enlisted the help of one of the nearby elves. 

After lunch, we gave in to the many requests to go swimming since the pool was literally outside our hotel door. That night we had a special visit from Snowy Bowy at our Hotel room. 

We didn't tell the kids, so when there was a knock on the door and Paige opened it. Her face absolutely shone, she was super pleased as Snowy Bowy has a light blue costume and looks a bit like Elsa from Frozen. Of course Snowy was Paige’s favourite elf. It was amazing how well briefed these guys are, upon arrival after greeting Paige she started singing, ‘Let it Go’ and they sang together,  d(see a short clip below) by this stage I was in tears, Samuel was covering his ears and Russell was scrambling for the camera! What a magical 25 minutes, well worth the money. Snowy spent so much time speaking with the kids that she didn't get a chance to read much of the story, but I don’t think that anyone really noticed or cared! Another magical end to a fabulous day in Lapland.

We found Santa!
Day 4 – December 12th
Our penultimate day started with a bit of Tobogganing, followed by a trip to the woods. 

We then got onto skidoo driven sled and headed deeper into the woods. We got to a beautiful wooden house and we were asked to help clean up the mess that Tricky Dicky made inside the house. 

We followed through, had a chat with Mrs Claus, then we met Wendy Wood who took us to meet Santa. I have to say the looks on the kids’ faces were absolutely priceless, there was Santa sitting on his chair in his house slippers. The beard look quite real and he had an indescribable air about himJ. Afterwards we played in the snow. If you would like to see the video of this visit please go to this site, there's an on site interview and at the bottom, there's a clip of the actual video with Santa.


After our visit the kids played with the elves and simply rolled around in the snow - why not huh?

ate some snow

lay in the snow

We also enjoyed some warm berry juice and a nice big fire. After lunch we had another skidoo ride and played games in the dark with Noisy Nod and Corporal Candy.
Later than evening we went for a private ride in the forest on the skidoos, looking for the Northern Lights. Russell drove and I sat behind him, whilst the kids were on a sled pulled by the guide. It was completely dark and no signs of life in sight. Looking around in the forest, your mind begins to play tricks on you as many of the short trees or plants looked like animal forms as they were covered in snow. Very spooky. Unfortunately it was way too cloudy to see the sky, but we knew that before we left. Later that night there was a celebration dinner, followed by a disco attend by all the special elves. The kids had a blast and we didn't get back to the hotel till quite late. Another fun filled day and we found Santa!

Our Final Day
Day 5 – December 13th, 2014

A free morning, so why not have a final roll around in the snow and as Paige says let's ‘hit the slopes!’ We sang the Elf song for the last time as we headed for the airport.
Having never heard of Lapland prior to moving to the UK, this has been an absolute surreal experience for us all. Even the Grinch Russell managed to get into the spirit eventually. Paige and Samuel hopefully will remember this experience for the rest of their lives. The tour guides were superb and there was never a dull moment, it was so well organised and the special elves added that extra special touch. It certainly gave us quality family time together. 

For anyone that knows me well enough, it would all have to be extremely well organised to not have a single complaint! I must say that I am strangely looking forward to returning to England, I don’t think that I could cope with all that darkness for much longer! Barely 2.5 hours of not sunshine but rather light greyness just doesn't cut it for me!

Again a very special thank you to The Make a Wish Foundation in the UK, if you can please make a donation so that other wishes can be granted.........

Russell, Lisa, Samuel and of course our little champion Paige

15 July 2013

End of Treatment

2 years and 3 months after she started Paige has finally reached the end of her treatment. She had her last dose of oral chemo last week Friday...

It feels odd not to monitor her eating at night (the chemo had to be given 1 hour after food and she had to wait another hour before having anything else to eat). This was also the first weekend that she didn't have her anti-biotics. I was filled with much anxiety at the thought of the end of treatment, what if she relapses? Can we cope with another set of treatment, and most of all can her little body endure any more???? But, as we all know, Paige sets the pace for us all and she now has a new passion for life itself that just can't be beaten! She is thoroughly enjoying her new freedom. We'll just have to continue to make the best out of each day and pray that all is well...........

We've also started testing her with dairy products and so far she has tolerated fromaige frais, chocolate and milk in certain products like bread. Her response to a chocolate petit filous "Mummy this is too nice, can I have some more?"

She is just so  grown up now, she's constantly telling us off, for instance. As we were driving back from the supermarket and she was having a chocolate drink:
"mummy please remember to drive slowly because I am drinking ok?"

About 5 minutes later she was finished, so I reached back to collect the carton, at which point she says
"mummy you're not supposed to do that while we're driving, we could have an accident, you should stop at the traffic lights and then take the packet!" 

This from my 3- (going on 13-) year old daughter :-).

Her carer has reported that she is very happy with all areas of her development and, as expected, her vocabulary is beyond her years. Her motor skills are normal, despite her steroids, chemo, etc. Needless to say, we are very pleased about that.

On another note, Samuel's teacher was also very pleased with his performance this year and reported that he is very popular with his classmates, and that he is one of the minority in his class that can do mental arithmetic - my dream come true :-). She also felt that we've only seen the tip of the iceberg in terms of his potential. He has had his naughty moments but, in the grand scheme of things, he is a fabulous big brother and loves and looks after his sister very, very well indeed.

So many things have happened in the last month, Paige celebrated her third birthday party with Peppa Pig, Jiggy Wrigglers and Cinderella. Paige had a special dance with Cinderella that what could be described as a 'Disney moment' and there wasn't a dry eye in the house! I have to admit it was an extremely emotional moment for me. All of Paige's entertainment and the venue was donated by Sally of Jiggy Wrigglers, just because Sally has a huge heart and wanted to do something nice for Paige, - Thank you so much Sally Paige'sparty was indeed magical!

Paige celebrated her end of treatment in grand style with a barbque hosted by Charlie and Juliette Whiting at their home. The event was a combination of their son Justin's 6th and daughter Charlotte's 3rd birthday party and a fundraiser for CLIC Sargent our nominated charity. The event was well attend and we raised over £500 in cash on the day. A huge thank you to Charlie and Juliette for offering to host the event.

Paige will have a monthly blood test and review at the oncology clinic at QA for the next 6 months. This will then reduce to once per quarter, and thereafter annually. She can only be given the status 'all clear' after 5 years and she will be discharged after 10 years. So we still have a bit to go. We will update this blog occasionally.

For now we're going to enjoy the hot English summer with my nephews Darien and Dhillon who are here for six weeks, and Paige's god father Richard who made a trip to the UK for her end of treatment celebration.

Thank you all for your support over the last 27 months. It really has made a big difference for us.

Paige, Lisa, Russell & Samuel

18 June 2013

2 more to go..... (written on May 19th)

Finally a spare moment to update the blog.

We've been quite busy the last month having fun and being a 'normal' family again. It's been fabulous!

I managed a trip to Glasgow for Joanne's (Russell's sister) Hen party with included copious amounts of alcohol and other really fun things which I probably ought not to mention! The following weekend I went to the Colour Conference for Women, courtesy of Kathy (Paige's godmother) and now I feel like a regular person again, and my spirit is partially renewed so that I can cope with the next couple of months......

On the May bank holiday long weekend we all managed to have an uneventful, except for the terrible two tantrums that madame Paige has now mastered ! hospital free weekend. The Thomas Ball charity provided us with a 3 bedroom lodge at Holbourne Naish family park which is close to the sea. There was also a Leisure centre with a kiddie pool area. Paige I think had the best time of her life so far. She was in and out of the pool on her own and simply loved it. We just sat and watched her in awe, an hour later she was still running about and ecstatic. Needless to say that we visited the pool three times! We were also quite lucky that there was sun, so we even managed to go to the beach twice, the water was freezing cold and they had to wear cardigans but they loved it.

Paige is looking so well and her hair continues to grow, she even managed to put on a tiny bit of weight and was up to 12.6kgs. She has settled very well at Nursery and looks forward to her sessions and particularly her swimming days of course! She's so 'healthy' that when she spiked a temperature on Monday at 38.2C she was still running around happily, what's even more astounding is that she managed to bring her temperature back down on her own and did NOT require hospitalisation. Of course I was worried nonetheless and I took her in for a review on Tuesday. Dr Millard did a review and prescribed some oral anti-biotics because she agreed that Paige looked a bit out of sorts and had a red ear. When her blood results came back she had 0.9 neutrophils, another surprise. It's remarkable how different life is with a child that no longer has a Central Line, and as Paige goes from strength to strength she seems more able to cope with the temperatures and silly colds that she is bound to pick up now that she is at Nursery. My worries and fears now need to catch up cause she's leaving me behind.......

Next week is her penultimate chemo and steroid week. Chemo is very traumatic for her with the cannula, but the week of steroids have become much more bearable. Each chemo is now different as she experiences new side effects with each round, or maybe she's now better able to articulate it. She feels pretty rubbish after her chemo and also has jaw pains.

12 April 2013

Two years on.....

Two years ago today our world came crashing down all around us and those words that no parent ever wants to hear was said to us......Paige was just 10 mths old at the time and looked like a normal, healthy, beautiful little girl

At Maracas beach in March 2011 - a chuf chuf at about 9.5kgs, look at the rolls of fat in the bikini....

 April 2011 - about a week after diagnosis at the Piam Brown Ward at the Southampton General Hospital, after lots of fluids and steroids

One year later we were back at the Paim Brown Warn in isolation for nearly three weeks with various issues and her feeding tube was inserted, she was completely bald having lost her second lot of hair, and quite thin at 9.1kgs, as Russell said at the time, she's was the picture perfect model for a child with cancer.

Loosing her hair was traumatic for all of us, especially her and most time she refused to let us take photos. I remember having a conversation with Dr Mary Morgan about her hair and she told me that it just it's one of the absolute visual reminders that your child has cancer and I shouldn't feel bad about being upset about it.

Now two years on, she has long beautiful hair, has managed without her feeding tube for 6 mths now and had her central line removed in early Dec last year. She is now 12.4kgs and looks amazing! Her hair unfortunately has started falling off again and I am trying my damnedest to prepare myself and Paige for the eventuality......

This was taken today showing off her scar from the central line on her neck

A close up with her sesame covered face

Our lives are still held together by glue and sellotape, and one would think that it would get a bit easier after two years, but the reality is that it does not. In some ways it gets harder because you have bonded so much more. Paige is so articulate now, with quite an extensive vocabulary that she is able to vividly describe all her ailments. She's having a pretty rough week with tummy pains, a painful jaw and tired legs. She said while walking up the stairs "mummy can you carry me? I'm trying to walk but my legs are just hurting so much"

She is also just too clever. Today at lunch she refused to eat my minestrone soup and asked for a peanut butter sandwich instead. The conversation went like this
Me: Paige I'm not very happy the your not eating my lovely lunch
Paige: she holds out the sandwich and says "just pretend that this is your soup and you'll be happy!"

but the end of treatment is drawing is near and we have to be thankful for that...just three more rounds of chemo to go.

A very special thank you to all our family and friends who have provided unrelenting support over the last two years, and to our new friends as well that have just come into our lives with kind words, thoughts and deeds...we really appreciate it.

10 April 2013

Neutrophils where are you...........

The high of the last two weeks came crashing down when Paige's blood results for this week showed that her neutrophils were at rock bottom of 0.1. Two weeks ago we were so proud of her ability to get to neutrophils of 4.5 on her own after two continuous weeks of her full dosage of oral chemotherapy.
Usually when her neutrophils have crashed there is a distinct change in her behavior and she is unable to make it through the day without a nap. Paige however clearly has unrelenting willpower  and she has made it through several days without a midday nap, just so that she can join in the activities with Samuel.On Saturday she even went scooting and to a birthday party with Samuel at the Marwell's activity center, she had a great time walking across a fallen log and looking at all the kids at the indoor play center. She is ever so clever though, she was allowed to use some of the rocking toys next to the soft play area, and before she went on she came running over..."mummy where are my gloves?' I am so pleased that she was protected!

So the start of the week was a like a swift kick in the gut and now her hair has started to fall out again :-( she has long beautiful hair and it's everywhere. Hopefully it'll just get thin and not all fall off. Apparently only some kids loose their hair during maintenance and Paige is one of those. For those that remember this is her third lot of hair and last time she lost more than 50% of her eyebrows and eyelashes as well :-(

her lovely hair

On the bright side we are busy planning birthday parties for both Paige and Samuel. Even though Paige is a bit young she has asked for a party and Sally of Jiggy Wrigglers has asked to provide a complimentary hall, entertainment and Peppa Pig for Paige party - thank you Sally you certainly have a big heart!

I also held my first fund raiser for CLIC Sergant yesterday, and while 50% of the people didn't make it, the ones that did had a great time and I still managed to raise some money. I also did a radio interview for WAVE 105, to be used during a fundraiser drive that they are doing for CLIC Sargent. It should be aired this weekend.

So the roller coaster that is our life continues, helped along the way with beautiful smiles and lots of chatter from the beautiful Ms Paige

Bloods will be done again next week Monday......

28 March 2013

3 More to go

Not that we're counting but we now have three more days of the demon dex (steroid) and three more cycles of chemo to go!

Oh it's been a roller coaster couple of days! last week blood sample no1 collected on Monday, clotted so no results. Sample no 2 got lost at the hospital and was eventually found thanks to detective Wilf on Wednesday morning. Poor man he hadn't even had a chance to take his coat or hat off when I called at 8.15am last Wednesday. Paige was due a swimming lesson at 8.50am so I was quite anxious to get a blood result. We were told the night before by the hospital that the lab never received a sample. I knew of course that she was well, didn't have a cough or cold and of course no central line and could go swimming but preferred to have Wilf's go ahead in the absence of blood results. Anyway all's well with her count, the sample was found stuck in the 'pod' and the results were pretty good with neutrophils of 1.8, despite being on 100% oral chemo for two weeks - Go Paige!

On Friday, she had her lumbar puncture, luckily she was first on the list. The anesthetists in the room were particularly pleasant and very accommodating :-) Of course madame Paige was awake within 10 minutes of being out of the treatment room and screaming. Poor Sister Karen came in and said "Lisa, she's awake and screaming!". They were all quite surprised that she could be so feisty and loud so soon after coming out. Katherine one of the nurses also reminded me that they still think of her as the 10 month old baby not the nearly 3 year old girl who speaks..... Our meeting with Dr Morgan afterwards gave us no additional assurances because she does not have any new information but felt relatively assured that the treatment of Paige's CNS (central nervous system) disease without the use of radiation did not place her at any additional disadvantages. She also confirmed that any relapse within the first 6 months would not be good.
In terms of follow up visits after end of treatment, she confirmed that we would do monthly blood tests and clinic for the first 6 months. She felt that would keep me sane :-). Thereafter she'll reassess.

By Saturday we were rearing to go despite the cold and we ventured out to Holly Hill for an Easter Egg hunt. Paige of course stayed in the buggy because the forest was a complete bog! The kids seemed to have fun despite the mud and Paige being confined to the buggy. Needless to say we were all quite happy to be back in the warm house. We even managed to attend Palm Sunday at Titchfiled church, a first for Samuel, Paige and I. The kids were quite tickled to see the real little donkey, Samuel of course used his palm as a sword......

Monday clinic with vincristine was quite traumatic for us all, Paige asked for Samuel to be in the room so that he could quote 'do silly things to make me laugh'. Of course nothing worked and she was in tears. It's good that she doesn't hold a grudge though because she gave Wilf a high five, kiss and cuddle before leaving. Wilf of course was beaming from ear to ear. Unfortunately Paige now experiences some of the side effects of the chemo vincristine, namely terrible jaw pain. She wasn't able to eat dinner and kept eating ice lollies to soothe her mouth. She's so clever....

It's heartbreaking to think that after all that she has been through in the last 23 months that she still may not be cured. It's even more difficult to accept that we have absolutely no control over what her outcome will be. She is such an intelligent, affectionate, stubborn, feisty little girl, that the thought of her not being able to reach her full potential in life is unbearable. Whilst I don't see these as negative thoughts, they have to be considered....The anxiety of her end of treatment is certainly bringing alot of suppressed emotions and feelings to the fore.


18 March 2013

Loves Nursery

Paige's Lumbar Puncture has been postponed to this Friday March 22nd because the 'list' was too long for last week Tuesday. This I thought was a blessing in disguise because it meant that Paige could swim last Wednesday and more importantly, being there on a Friday reduces the probability of having to deal with the unpleasant anesthetist.

Paige has now had two swimming lessons and lunch in the main dining hall. She absolutely loves it at the West Hill Park Nursery! Today she participated in the Easter Bonnet parade, proudly wearing her bonnet made with love by Mummy, Samuel and finishing touches by Paige. I am such an emotional mess that I cried at the school's main assembly while she was at school, sitting so nicely with the other nursery kids. After the parade I left and she said "bye mummy see you later". She is so confident and eager to learn and be with kids her own age. It must also be quite refreshing for her to be with other healthy kids as well. Credit is also due to her key carer Becca for making her so comfortable and welcome, poor heart she had to change Paige's nappy and it occurred to me that it was the first time that someone other than Russell or I had done that.

Of course we had to make bonnets for both Samuel and Paige.

School closes this week for 3 1/2 weeks so if I survive I will update the blog weekly. Her next round of Chemo and steroids is due next week Monday. Never thought that I would say this but I am looking forward to her eating again, her weight is back down to 12.1kgs and she seems to have lost her appetite. Results from last week still showed a rather low level for her hemoglobin, we haven't had much success with her taking her iron supplements.

Blood results for today are now delayed because her sample clotted, not a surprise really given today's process. Hopefully we'll have better luck tomorrow because her last swimming lesson for the term is this Wednesday.

So the countdown to July continues and we're looking forward to an uneventful Easter holidays.


6 March 2013

First Day of Nursery and Swimming

We made it through yet another week of the dreaded dexamethazone; Just 4 more to go and definitely counting! Every month we have new issues as she continues to mature and become more aware of everything around her. On Wednesday night just before she fell asleep she said "mummy you forgot to give me my medicine", she was correct so I gave her the chemo and she went to sleep. On Thursday she flat out refused to take her chemo and said "I've had enough!", she completely broke my heart. I had to go against my better judgment and force her to have it. In the end we were both traumatized and I apologized. She said "it's ok mummy, don't do it again, ok!". On a brighter note, she awarded me with two green stones for being "good' last week. Once when I made her laugh and another time for sitting quietly and watching TV :-)....hmmm the student becomes the master.....

Anyways, medical update, after three weeks of having 50% of her oral chemo dosage Paige's neutrophils have held and she is still at 1.4 based on this Monday's blood results. So her dosage has now been upped to 100% asap. Tests have also now confirmed that her iron levels are quite low hence her consistent low hemoglobin levels 8.1-8.6 over the last couple of months. She has now started an iron supplement. You can't get anything past her so it is well hidden in her grape juice.

Now onto fun things:

Paige is now discovering the joys of dressing up and her big brother is her hero so she likes being Fireman Sam, as well as a fairy princess (pics to follow). Samuel of course is very involved in superhero week and is currently Batman.

Paige's dad is not just a pretty face and here he is making sausages for his beautiful daughter to reduce the amounts of preservatives that enter her body... and of course any threat of horse meat :-)

I was so very proud of her today, she packed her new goggles, her named towel and her swimming costume into her new personalised swimming bag and we were off to school. Yes I do like having the right kit :-). When we arrived at 8.20am, at the nursery Gigi the Head of Nursery reported that one of the kids had a spot, so we followed her directly to the swimming pool. Paige got changed, as did I. We got to the pool and in she jumped without so much as a glance back at me! She was so happy and at home in the pool, she lasted the full lesson without being tired and smiling all the way through! So much for me be worried that she would need me in the pool. Afterwards we walked back to the nursery and of course madame Paige refused to hold my hand, instead she held the hand of her 'new friend' another child at the nursery. She sat nicely and has a snack with the kids, they played outside, then came back inside. By now it's 11.30am and I was exhausted but Paige refused to come home. In the end I had to bodily remove her and she was not impressed. This was just a settling in visit. She will have another settling visit on Monday with lunch, then officially start on Wednesday next week.

She just looks so grown up now!

Next week Tuesday she has her penultimate LP. In other news Clayton is recovering nicely after his marathon 15 hour surgery last week Thursday. He is a true hero.


26 February 2013

Life's a Yo Yo - didn't you know?

The life of a family fighting cancer has so many ups and downs we are a virtual Yo Yo!

Paige had her first haircut at a beauty salon.

She also celebrated her first Valentines day with us as a family in our house rather than at the hospital, which included making special cards for everyone and pressies! We also spent a lovely weekend in Bath with Margaret and Asha, two of my classmates from high school, along their respective families that weekend. Samuel was quite amused that I was seeing my 'school friends'. Paige was her usual cheery self despite having been given a low neutrophils count of 0.4 on Monday Feb 11th. We knew that she had recovered though, a good indication was her ability to give up her day sleeps three days in a row! Of course Samuel was at home for half term so that certainly helped with her staying awake. That was a great 'UP' for us all being able to have a weekend that was away from home, hospital free and with friends. Quite a treat for me particularly.

Then we returned home on Sunday and she spiked a temp of 38C on Wednesday morning at 7.00am. By this time her neutrophils was back up to 1.6. So they observed her for many hours at the hospital, inserted a cannula, gave her some IV anti-biotics and sent her home to be managed. She now had neutrophils of 6! So for the first time since she has started treatment her bone marrow was working really hard to fight her infection. By midnight she spiked again to 38.6C and a quick call to the hospital confirmed that we could administer Calpol as needed and take her in to the hospital, if we were at all worried. Managing her at home was quite scary, without the safety net of being in the hospital. Of course being in the hospital so many times previously I was well trained and prepared. So of course kept a log and did 4 hourly observations, with hourly temp checks if she had a temp! Her fever eventually broke on Thursday late afternoon and she's been on the road to recovery since :-).

Then yesterday she had her 4 weekly cycle of chemo. After two tries her cannula insertion was unsuccessful and we stopped to try and warm her hands in a bowl of warm water. So here we are at the clinic with two oncology consultants, (their protocol is that if there are 2 unsuccessful attempts, another consultant has to try) a specialist nurse and a bowl full of water filled with toy frogs. Needless to say we all had quite a bit of fun and got our hands wet except Paige of course who refused to comply. The Oncology Pediatric Consultants at QA are certainly a special breed and they do try especially hard to make Paige's journey as stress free as possible - Kudos to them! The third try was the charm but she was understandably distraught by then. But not too distraught to hear me promise to get her a pressie if she remained still. So three hours later we were on our way to the toy store. Her 'babies' now have a lovely bath and wooden bunk bed to sleep in!

Neutrophils are still holding at 1.2 based on yesterday's results so that she did playgroup and a quick visit to the Nursery today. She oficially starts on Monday 11th! Quite exciting for her and scary for me.

Good news - end of treatment has been confirmed for July 12th, with her last lumbar puncture and bone marrow biopsy on June 4th.

Her next LP is due on March 12th.

Not so great news one of the kids that we've met on our journey has been diagnosed with another unrelated type of cancer 9 months after being given the all clear for his first type, he shares a birthday with Paige and will be just 4 years old this year. His name is Clayton and he is undergoing surgery today to remove his tumor after unsuccessful rounds of Chemo, please pray for him and his family and keep them in your thoughts. This injustice to him is almost too much to bear and is painful just writing about it............

4 February 2013

Lots Happening!

Since our last blog we've had to deal with snow, a couple of trips to the hospital low neutrophils and Russell being away for a couple of nights.

We've pulled through with the help of our new friends Rachael and Oliver (parents of one of Samuel's classmates) who kindly offered to do both ends of the school run because Russell was away and Paige has neutophils of 0.3! and particularly our neighbor, Naomi, who came to our rescue, or rather my rescue on the night of the heavyish snowfall. Post Paige's recent hospital visit she continued with a hacking cough and very labored breathing. After consultation with Dr Millard I administered an inhaler but was still not happy and Naomi knowing me as well as she did, offered, AND took us to QA to have Paige reviewed. Her chest was clear..... she was just very badly congested - I was so relieved that I didn't even remember to feel silly! Naomi even arranged to borrow an electric vapouriser for Paige and picked it up on our way home - You are a star Naomi!

Paige enjoying her 10 minutes in the snow....poor child was so wrapped up she could barely move, complete with insulated wet gear, ear muffs, hat, scarf, gloves and two pairs of socks. All of this of course over her regular clothes and a cardigan.

Since then her cough has cleared with the aid of a vapouriser, humidifier, and strengthening blood count. She continues to blossom and flourish, her hair has grown so much she can now even have pony tails, of course they only lasted as long as the photos, but so what?! Her weight is holding steady just over 12kgs and everyone who sees her comments of how well she looks.

Her language and ability to manage her parents have also improved with comments like "ok mummy it's time to get lunch sorted" or "I'm a bit busy right now mummy, ok!"

She had chemo last Monday and was an absolute star about having her cannula inserted and thereafter chemo administered. Russell apparently gave her the option to look on at what they were doing or have the team do the necessary using him as a human shield. Of course she wanted to see what was being done and was quite well behaved all things considered! We even manged an uneventful week of dexamethazone, she started eating at the tail end and has stopped yet, when she stepped on the scale last night she was a whopping 12.8kgs.

Jenny her favorite Community nurse came over to get blood via a finger prick this morning and it went really well, it's probably a combination of Paige getting more accustomed to the procedure (yeah right) or that she knows and trusts Jenny. I firmly believe that it's the latter. On the previous instances we had to firmly restrain her during the process. So well done Jenny and Paige!!!

The biggest event of last week was our decision to start Paige at WestHill Park from March this year. I met with the Principal of the school and the Head of the Nursery. They were very flexible and extremely co-operative. They are quite ready to put all the required systems in place to accommodate Paige and to be as flexible as she requires - what more could a mother possibly ask for? I think she is quite ready for more stimulation than she can get at home. I am also quite anxious for her to socialize with normal kids her own age, be in a setting that is NOT a hospital and also exist with us. I have to admit just talking about it made me have butterflies in my stomach. We both need this, me being able to let go and her starting to find her own way.......

So great things ahead, bloods are good based on today's results, neutrophils are up at 1.4 and her oral chemo has resumed.  The next step is repeat bloods on Monday and thereafter the go ahead for our Trini weekend in Bath! We are hoping to spend to spend next weekend with two of my school mates Margaret and Asha who now both live in England. It promises to be quite interested three Trini women, a Bajan, an Englishman and a Danish man :-)


17 January 2013

Happy New Year - Finally

Happy New Year!

I finally have a chance to update the blog.


Kevin and Renee arrived on Dec 16th to spend the holidays with us the kids were absolutely thrilled. The holidays started off with afternoon tea on Monday. On Tuesday 18th Paige has her 12 weekly LP. It was her first one without a Central Line and her arms were quite bruised afterwards, the genius anesthetist manged to use the one spot on her arm where we didn't put and numbing cream and so she was quite bruised from the cannula afterwards. We only put cream in 5 other places! This particular anesthetist I have to mention is the most obnoxious person that I have ever met and her bedside manner is non-existent. I have now had the displeasure of seeing her three times and each time a  member of the PB team has apologized to me on her behalf. Anyways Paige was fine afterwards.

We all enjoyed a fun day in London, which started with a visit to Aunty Kathy then a ride on the London Eye in a private pod - Thank you Kathy! We then had lunch and a visit to the London Aquarium. The kids had a fantastic time and Paige absolutely loved being on the train and just generally out and about - it was of course her first trip to London.

Christmas was uneventful and there were no trips to the hospital! Since Paige's line has been removed we now have a completely different child, she is stronger, more outgoing and more interactive with us and other people as well. Her vocabulary and sentence structures have also improved!

All dressed up in ribbons before I turned them into bows :-)

Christmas morning, she got exactly what she asked Santa for a pink kitchen!

Evidence of her greater interaction - having fun with Aunty Kathy

Paige had her Vincristine via a cannula for the first time on Dec 31st and Russel said to me that it was quite "an emotional experience", all went well however and we breathed a sigh of relief. Only 6 more to go! She came home and reported that the doctor hurt her when they put a cannula in her arm :-(

By the end of her Dex week, we were all pulling out our hair but equally excited because Kevin and Renee's blessing was coming up.

Paige kept practising throwing her flower petals and trying on her 'wedding dress'

By the big day January 5th she was ready!

Kevin and Renee left the following day and Paige still asks for them everyday :-( Of course Samuel wants to move to Trinidad so that he can live in a warm country.

Last weekend we had a slight hiccup and Paige was admitted to hospital because of a temperature and neutrophils that had dropped to 0.6. She only spent two nights and was discharged with oral anti-biotics. Russel did the run and said that she was really co-operative. Reports from Paige when she returned home were that the doctor hurt her again. She also commented that the grown-ups say silly things to her while she is at the hospital! Her neutophils are now at 0.3, so that she is house bound and still coughing quite a bit.

Russell is away till Saturday and Rachel and Ollie, the parents of one of Samuel's schoolmates Louis have kindly offered to both drop and pick up Sam from school today and tomorrow so that Paige does not have to be exposed to both the cold and the germs at school. We are so blessed to have so many wonderful people around us to help out when needed. Thank you Rachel and Ollie :-)

Hopefully updates will resume weekly, she has a follow up clinic and bloods next Monday at QA

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.