27 December 2011

Merry Christmas Everyone

Paige had a lovely Christmas. She enjoyed having special guests Uncle Kevin, Aunt Joanne, Uncle Peter and cousin Eilis. She's doing so well, it's sometime difficult to remember that she is ill. She now has a decent amount of hair and now that we have cracked the issue of her sick tummy she's in a much better place. She's seems to be lactose intolerant. Unfortunately it means that she now has a more difficult diet to maintain but it's amazing all the stuff we can get for which includes but is not limited to chocolate, soft and hard cheese, it doesn't taste so great but she doesn't seem to mind :-)

A pic of her on Christmas morning in her jammies, trying to give her new dolly a ride

Followed by a yummy lunch made by daddy which consisted of a chestnut/squash soup, turkey wellington, sprouts and roasted vegetables. Topped off with a Christmas cake made for us by the Bowen's with love.

and finally three little bunnies opening their stockings after dinner

Merry Christmas to all.....

12 December 2011

LP and Dex this week :-(

Today was Orlando's farewell, it was a beautiful, sad ceremony attended by many people, there was standing room only and I felt as if my eyes would explode with tears when Richard walked in carrying the little Thomas coffin all by himself. No parent should ever have to say goodbye to their child so early in life but Richard and Rhian are the strongest parents that I have ever seen and they made sure that Orlando had a send off that was very fitting for his short but blessed life. They are also ever so thoughtful and sent a balloon from the cremation for Paige, which she absolutely loved by the way.

Unfortunately Paige was unable to attend because she had Vincristine at QA today and has also started a five day course of the dreaded Dexamethazone (the steroid that makes her super grumpy and beside herself). On the good news side her neutrophils are still up at 1.6 and she looks really well.

Tomorrow we are at PB for her Lumbar Puncture.....

Busy Weekend

We had a pretty busy weekend. We are taking full advantage of Paige's neutrophils, so she attended Samuel's pre school Christmas Fayre om Saturday and did lots of fun stuff like decorating a cookie, catching the ducks and of course a visit to Santa! She seemed quite pleased to be out and about and see other children :-)

On Sunday we attended Piam Brown's Christmas Party and the kids had a fabulous time! They both had their faces painted and Paige ran up and down and all over the place free as a bird and probably felt more comfortable since other kids there didn't have any hair either.

then we had Buzz Light year

and both kids watching the magic show

 The Piam Brown team put on a really good show and the Paige also got a really nice gift. It's so good to see her running about and having so much fun.....

8 December 2011

We have growth!

Call the OBR! George and Dave could learn a lot from Paige's follicles. While the UK economy bumps along at 0.9%, her hair has shown growth of 500%! And that's after taking into account the one-off effects of the unseasonaly warm weather and Pippa Middleton's bottom. For the last two months the only hair she has had was a "mousetache" on the back of her head. The reason for the growth is that she is in a period of maintenance, which means limited chemotherapy. But also, the drugs that mainly cause her hair loss are Dauno- and Doxorubicin, and she has not had either of these for a while. At this rate, her hair will be longer than her mother's by January!

3 December 2011

Yesterday Celine, Joseph, Paige and I we were due to visit Orlando and his family and I was supposed to make a curry. Orlando has been battling with Cancer and unfortunately his tumors returned after several rounds of chemo, he was sent home just two weeks ago to be made comfortable. His very, strong and brave parents invited us to their home despite their very delicate circumstances, cautioning me to be prepared for the worst. When the phone rang at 7.30am yesterday morning I didn't get to it on time but as I feared the worst has happened and little Orlando has gone to sleep forever at 4.15am in his mother arms and his dad holding his hand.
Death affects us all in so many different ways, I couldn't update the blog yesterday because I was so upset yet Orlando's mum apologised to me for cancelling lunch at such short notice and his dad asked me how Paige was doing :-). As a friend of mine said to me when people ask 'how do you do it' the response is 'you just have to get on with it, don't you cause you haven't got a choice' Orlando has a younger brother who turned 3 last week Saturday.

So we started the day with a messy breakfast and little Miss Paige refused to let me feed her, so the kitchen was pretty much covered in rice crispies

Celine and Joseph then joined us for a curry, I believe that it was Joseph's first curry and he really didn't seem to mind using a pink bib and plate...

then the kids did some painting and made a beautiful mess for us to clear up afterwards :-)

so a difficult day was made more bearable because it was spent with friends, where we found comfort in each other and our beautiful, brave children who are storming through their respective treatments and giving us the much needed strength to cope with every new day.