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...

Demon Dex - no so bad anymore

whew,

we've just completed a week of the Demon, but it wasn't so bad this time. Paige was still miserable and trying at times, but at least she could tell me what she wanted such as 'bagel, almond butter in it!' etc. Her tummy still seems to be under control and her eating is improving somewhat.

Bath times are such fun times now, both kids have so much fun and Paige is allowed in the 'big' bath with her brother. It's so wonderful that she can do 'normal' things now like have a bath with bath paints and maybe lie in the water briefly.

 A pic of her after a bath :-), we've even learned how to reduce the amount of medical tape that we use on the poor girl!

Baby got new shoes!

What a wonderful week just gone by....

Paige has now had many new experiences on Tuesday we went to Tesco and she sat in a cart and ordered me around to get her things which included 'frutapura' and sweeties, she even gave them to me to check out at the counter then asked for it again - my incredibly clever daughter.
On Wednesday we ventured to the Surgery and then to the pharmacy to collect some meds, we bumped in to someone that we met at massage class, that just had another baby and apparently I really upset her when I told her that Paige had leukemia, I never realize that it can upset people. Anyway madame didn't like waiting at the pharmacy and kept saying, "come on let's go!"
By Thursday I was being told "No I busy right now" and "hold on 1 minute" by my lovely daughter, who by the way can now count to 5. Sam on the other had can count to 20 and also to 10 in French!
On Friday we visited her buddy Jobo, who by the way is now stomping around and looks incredibly healthy!

Neutrophils are still up at 1.1 and the demon dex starts today, we're hoping that the effects will be different this time!

We have neutrophils :-)

I've checked through Paige's records and the last time that she had neutrophils above 1.0 was back in January before she began her last round of intensive chemotherapy. After clinic I couldn't wait to call and get the results tonight because I knew that she was above one, and yup her count is at 1.7 so she can finally start her oral chemotherapy, which was due to start on March 26th!

Paige is so full of energy and excitement that she now begins her day at 5.30am and she is wide awake at that time. She is also shows all the signs of the 'terrible twos' in fact we had a full display this morning when she refused to change out of her pjs and into regular clothes so that we could do the school run. It took me 15 minutes to get her dressed, as I put one leg into her trousers she took out the next and so it went. She then refused to get into the car and demanded that I turn on the DVD as soon as she was buckled in "TV ON". Of course I relented after "sorry mummy" was delivered. It's been really difficult to try and instill any discipline over the last couple of months because she has been so ill and we always give her the benefit of the doubt. Maybe something is hurting or doesn't feel right. Now however rolling around on the floor because she can't have her way screams of toddlerdom.

She has enjoyed an adventurous couple of days though, on Friday she sat in a shopping trolley and we got a couple of things at Tesco, she loved it and got her own stuff too. On Saturday and Sunday we went to the beach and she picked up pebbles and ran into the surf to throw them into the sea. Today we even went into the surgery to collect a prescription, then to the pharmacy to fill it. All seemingly normal things but to Paige and I, they were huge steps towards a semblance of a normal life.

She's now up to 10.45kgs in a nappy and both the gastroenterologist and the oncologist were very pleased with how well she looks. We're all quite looking forward to a well Paige :-)

New feeding tube in

After a couple of phone calls and a very helpful Karen at the Day Ward on Piam Brown, one of the community nurses came out today and replaced Paige's temporary tube with a new one, fingers crossed that this one will last three months as it is intended to do and who knows....maybe we won't need a replacement after this one :-). to be on the safe side however I have in my possession a spare tube in the event of another accident.

It's taking quite a lot of getting used to having an extremely vocal Paige who is up to mischief all day long, but I have to admit that I am loving every single minute of it. She has clearly been listening and storing everything that we've been saying to her and she repeats it now. Her sentence construction is amazing, Russell and I both agree that she is more coherent that Sam was at this age. We were advised that she could have developmental delays due to treatment but and I am so pleased to report that we do not see any evidence of that based on our own subjective opinions...of course. Every mum thinks that their child is a genius and I am no exception I think that Paige is clever beyond her months.

So for now we are relishing in the fact that Paige continues to look fabulous and hope that her neutrophils recover enough by next week Monday so that she can resume her or rather start her oral chemotherapy. She has now missed two rounds of oral chemo as she was due to start on March 26th but hasn't had the required neutophil count of 0.75 to begin chemotherapy.

We will attend the first of Dr Beattie, her gastroenterologist's outpatient clinic on Monday next week and hopefully her soya ban will be lifted and she can begin to enjoy her puddings and chocolate milk again. I am also working very closely with her new nutritionist Jo Gamble to make sure that the gut is healed and reduce to amount of toxins that we put into her body.

Tonight we are extremely thankful that Paige is recovering so well. We have just learned that one of the little girls who was diagnosed soon after Paige is just recovering from Pneumonia, a collapsed lung, coma, and life support all over the last 5 long days for little May, who is only 14 months old . Please say an extra prayer for her and her family.

Good night to all.

Never a dull moment!

Paige was discharged yesterday afternoon at 2.00pm and we had a pleasant uneventful afternoon and night yesterday.

Have I mentioned that she has absolutely found her voice? ordering me around all day long. She's also a full member of the Sam fan club and idolizes everything that he does, which is good and bad, but hey if she says "yes please" and "no thank you" who am I to complain.

We spent a lovely day at home and she's still inching up on the scales at 10.3kgs hooray!

Anyway for the first time tonight we left both kids in bed awake and went down to the kitchen to have dinner together, at about 8.15pm both Sam and Paige started crying. Sam apparently tried to move the feeding tube from Paige's face and pulled it right out!!! of course this required a call to CAU and they suggested that we come down to QA to have it replaced because the community nursing team were quite busy tonight. Mel who answered the phone said they weren't very busy so we could be in and out quite quickly. What I didn't understand fully is that they were going to use a temporary tube which needed to be replaced in a week because all their other tubes had been recalled and not yet replaced! Of course Paige was completely distraught after the process, so much so that when I asked her if she wanted a cuddle she said "no, don't touch me" and pointed to her tube and said "don't like this one". She also warned Sam not to touch her either! So I'm no longer going to ask what else can this poor child endure because something else always happens. Tomorrow is a new day and I will begin the hunt for a new feeding tube.
There is absolutely NO WAY that I am going to allow the hospital to put a new temporary tube every week that is simply inhumane. I don't know why but I am still amazed that the hospital can be so disorganized and un-caring for their patients. I appreciate the need to return faulty feeding tubes, but why can't they get  immediate replacements or at least source some from another hospital or community nursing team??? After all feeding tubes must be given to kids who are really well and need additional pain and suffering, right?

Finding it really hard to be positive tonight............

In Hospital Again

Paige has made so much progress in terms of looking well, putting some meat on those bones and speaking in the last couple of days. So we felt certain that the decision to go to the Lake District this weekend for a much needed break was a good one, till Thursday afternoon. Paige woke up at 4.00pm crying and warm to the touch and I though that she was just warm because she was sleeping under the duvet, but her crying was odd. She eventually perked up and asked for "bagel with almond butter in it" then continued playing with Sam. At 6.00pm her temp was 38.3C and I started packing for the hospital. She had a bath and by 7.00pm she was down to 38.0C so we became a bit optimistic and we all headed down to the hospital 'out of an abundance of caution' for her to be reviewed by a doctor. When we got there her temp was 40.1C so there was no chance of going anywhere except to the Starfish ward for the next 48hrs or so. The lodge at the Pine Lake Resort was booked from Friday till Monday morning........
So 48hrs later her blood cultures are negative, her poo is clear and line swab was also clear but she continues to have pretty high temperatures, she had another 38.1C yesterday at 7.00pm. She was allowed home for a couple of hours this afternoon, but will have to continue with anti-biotics and remain in hospital until she is temperature free for a min of 48hrs.
On the bright side her neutrophils are up to 0.5 (it's been 0 to 0.2 over the last couple of months) so she seems to be recovering. The consultant reminded me that normal kids her age get an average of 10 colds per year and of course Paige is no exception.
We are just over the moon that she is now up to 10.2kgs with just a nappy, she's eating, drinking and ordering us around (not sure where she gets that from!) and has a 'common cold'.

She's giving Russell a 'nosy', she touches her nose onto yours and only special people like her daddy is privileged enough to get one!

In the car on the way home, she took Sam's hat while he wasn't looking!

She received a package of goodies from her Aunty Katrina, who lives in France yesterday. She found the box when she came home and really tucked into the almond bar, fruit purees. She absolutely adored the little cat, in fact she hasn't let go of it since she saw it yesterday - thank you so much Katrina you made her afternoon :-)

So our journey continues one day at a time, strangely I was gutted on Thursday afternoon when her temp started to rise, but by Friday midday she was giggling and she was so pleased to get yet another nemo costume, that she's wearing in the pic above from the QA team (we manged to ruin the first one in the washing machine) that I forgot about everything else :-)

My baby brother keeps telling me that the big man upstairs does not give us anything that we can't handle....and with the tremendous love and support that we get from our friends and family we'll make it through. A special thank you to my aunty Maria who is also my god mother. She checks on us every week without fail sending her love and prayers always.