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.....

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.....

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!

Christmas tree

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.

Lots of Neutrophils

Apologies for the lack of entries, life has been pretty busy...but in a good way.

Paige looks fabulous, is eating and drinking well and getting into all sorts of trouble!! Her hair has even started to grow again :-) Evidence of all of this is her neutrophils which is at 1.6 as of yesterday, she hasn't had such a good count for a long time so we are all quite pleased. Wilf, Paige's oncology nurse was also quite pleased with her results and said that her bone marrow is working pretty hard.

Paige's latest trysts are moving around the kitchen stool to get 'stuff' from the kitchen counter which includes plates, spoons and snacks. She also enjoys throwing items in the toilet bowl and retrieving it again, and we have four of then for her to choose from....of course this doesn't bode well given all the hard work that goes into keeping her and the house super clean and germ free. So we try to keep busy by doing fun things like painting,

writing her letter to Santa

We took her to Paulton's Park's winter wonderland last Sunday and she really enjoyed the rides but didn't want to sit on santa's lap. Sam on the other hand sat on his lap and listed all the items that he wanted for Christmas. This is the helicopter ride in Peppa Pig's world

Paige hopefully will have a quiet week this week, her next lumbar puncture is scheduled for Dec 13th, so I'll update the blog weekly now unless there something to report :-)

Day 4 - Dexamethazone and the value of a good curry

The full effects of the dex is visible now and madame was miserable all day long and to make matters worse she refused to sleep as well, so by 4.00pm I had an over tired, frustrated, little girl who seemed to be constipated AND have a toothache. So I made curry chicken for dinner and it worked a treat, she loves chicken so had at least two pieces of meat. Oh and another thing you can take the girl out of Trinidad but you can't take the Trini out of the girl! Despite me cutting the meat off the bone for her she insists on eating the meat straight off the chicken leg! she doesn't particularly like boneless breast either. Anyway after dinner her mood lifted then she did the biggest poo ever which landed her in the bath and then I had a completely different child.

Paige continues to absolutely amaze and astound me, I needed to change her dressing and griploc because it was peeling off and her line got soaked during the impromptu shower. So I sat her on the bed in her dressing gown and she just sat there and held up her arm for me to first peel off the old dressing, dry the area, then curl and replace the dressing - this took a good couple of minutes and she just sat there quietly holding up her arm ....I've watched other kids scream on the ward when having a dressing changed and Sam yelled bloody murder just this week when I took a bit of gauze off his arm. Yet here is my little girl whose skin is now pale and red from having a dressing removed and replaced every 5-7 days for the last seven months, sitting and also holding her arm up so that I can clean the adhesive off and put on a smooth dressing. To top it off she obviously felt that I was taking too long so she peeled off the backing and put the griploc on herself. A griploc is an expensive plaster that has velcro on the top so that it helps to keep her line in place.
Tomorrow is the last day of dex for this month, unfortunately it will be repeated every month until her treatment is finished sometime in July 2013, so we all need to make our peace with Dex!

Day 2 - Dexamethazone

Paige's LP went well on Tuesday, however literally 5 minutes after coming out of the room she woke up and was completely miserable, not surprising since the anesthetic would not have had a chance to wear off! Later in the day we spent some time with Orlando and his parents, his outlook has not improved at all and he is in alot of pain, his parents though tormented by his news and the tough decisions that have to be made still managed to be positive and were quite happy for Paige and I to spend time with them and provide a much needed distraction. My heart goes out to these very brave people and pray that little Orlando's pain goes away......


In the meanwhile I have to do the impossible task of keeping Paige happy, she is already totally miserable and spent most if her waking hours crying. The steroid is meant to increase her appetite instead it has done quite the opposite and upset her so much that she's not interested in food, but at least she is drinking loads of water. I've been holding her so much today that my arms feel like they'll fall off. Another side effect of this drug is aggression and I've certainly seen some of that today, if Paige doesn't want something, she will literally knock away with a backhand swing, this included but was not limited to her cereal at breakfast and soup at lunchtime. She will only eat plain food such as pasta with butter and cheese and refuse any orange food. She keeps a close eye on the color of what goes on her spoon and will knock away anything that's not white or meat!

I've been told that even children with cancer have to be disciplined, lest we end up with a spoilt monster who is accustomed to having her own way all the time at the end of treatment, but how am I supposed to do that in the wake of all the bad news around us? We have been advised to be social with the parents of other kids but not to get too embroiled in their lives but that seems difficult if we are all going on a similar journey and we do need support from each other just to keep going and to stay positive.
So I will gather all my positive energy and hope that it transfers to Paige over the next 3 days of dex, so that we can all make it through the day tomorrow and the two days after that because today we have to be thankful that Paige's treatment is working and she is otherwise healthy and we do not have any difficult decisions to make.
For our friends and family who read our blog please offer another prayer for little Orlando so that his pain is lifted and his parents are given the courage to do right by him, whatever that may be.

Neutrophils of 1.0 Yay!

Paige my charming daughter had her Chemo today at the QA, all very uneventful and Dr Millard suggested that she may not be able to start her oral chemo today if her neutrophils were below 1.0, they were 0.3 on Thursday last week. I can't believe that she's recovered so quickly...hooray, this also means that she will not require a transfusion and has made it through yet another intensive block and is there is definite activity in her bone marrow..well done Paige!

Interim Maintenance II begins

The last couple of days have become a bit of an eye opener for Madame Paige, she's definitely strong willed as we have seen with how she handles her treatment., She knows exactly what she wants and it's her way or the highway! She will throw herself on the ground and scream if she can't have what she wants and this includes Sam's toys that he is currently playing with. She shouts quite loudly and can articulate exactly what she wants even if she can't form the words and she's also quite sneaky she'll sometime wait till Sam isn't looking, steal his toy and run away and hide with it!
She's been eating and drinking very well in the last couple of days and looks really healthy, except her hair of course because she is now completely bald, even the stubborn strands that didn't fall of last time have now gone, but she's lucky that she has a fabulously shaped head.
Tomorrow interim maintenance begins with Vincristine at QA, which is a 'straight' through in her line. This is the Chemo that affects her tendons and may cause her to walk on her tip toes. On Tuesday she'll have a lumbar puncture at Piam Brown. This week she will also have Dexamethazone, the steroid which makes her absolutely ravenous, very, very grumpy and miserable with interrupted sleep patterns. She'll also start Mercatupurine an oral chemo which is given daily by me. So this week will be rough for both Paige, and I don't expect to have any energy left at the end of the day for an update. So here's to hoping all goes well and that I can keep Paige entertained during the week. More than willing to entertain any suggestions for distraction tactics :-)

Eating Again

Paige is finally eating again, but oh what a mess!!! Tuesday she decided to wipe the table top with the soft cheese side of her sandwich - of course.
Yesterday and today she ate breakfast and yoghurts - what is it about your child eating that makes you feel so good?

Today she's enjoying her milk (quite unusual for her) and of course had two helpings of chicken tonight. I think that she may be either having a growth spurt or really enjoying not having any chemo this week. She's also quite a rough and tumble girl, today she ran after Sam yelling 'back, back' when he took a ball from her. She then tackled him from the back knocking him over and trying to bite him on the back, all the while I am in a controlled state of panic because of her line. I guess this is all normal for kids their age, but no so much for us. Later in the morning I decided to venture out for the first time with both kids in tow, of course Sam motivated by the fact that we were going to get a water bottle with his name on it, sat down quite nicely and put Paige's shoes on for her. She of course took it off immediately and he had to put them on again.
Busy days ahead with Paige's new found inquisitive, determined and stubborn self. She is relentless and uses all her skills to get things that are out of her reach. I'm also really looking forward to some new hair again!
Thankfully she's now peacefully asleep and cuddled with her big brother....

Feeling a bit crappy

Paige had her last dose of cytarabine on Friday and has now almost completely lost her appetite. She's having maybe one meal per day and will snack on raisins or grapes, at least she's drinking water, juice and some milk. She is starting to look quite skinny though :-( She was also sick a couple of times on the weekend which is quite unusual for her. I guess this is to be expected after two weeks on continuous chemo on an already low neutrophil count. She also has a snotty nose and just doesn't seem herself. A quick call to the CAU (children's assessment unit) and a chat with one of the Registrar's made me feel more comfortable, he recons that she is just feeling rough post her chemo, but of course if I am worried or she is unwell we have open access and can take her there in an instant.
Didn't do much as usual this weekend given that her neutrophils may be naught or very close to that, but we did have a visit from Kathy who always manages to cheer us all up. Also I managed to go out to dinner with the girls for a pre-birthday celebration, complete with some bubbly, a beautiful cake courtesy Kathy and a boogie at the disco, (this combination of words shows both my age and where I live) they still call it a 'disco' and call dancing a 'boogie'!
Anyway back to my daughter. This is today's pic a simple box to cheer her up ! Every day we are reminded of how lucky we are that she is still, in the grand scheme of things, doing so well, there are so many others coping with a similar illness having a much more difficult journey. Paige is such a sweet, little girl and she makes our lives so rich and full of love everyday, a simple cuddle or kiss from her gives us the fuel to keep going.

Hopefully tonight will not involve a trip to the QA and Paige can enjoy her week off from Chemo until maintenance begins on Monday 15th. Here's looking forward to a quiet week for all of us.

We love you Uncle Kevin

The ebbs and flows of Paige's appetite has no rhyme or reason. I guess she eats when she's hungry and won't when she's not! As I expected though her appetite is decreasing with each dose of Cytarabine. She's becoming quite a mischievous little one, she was missing for about 15mins yesterday and when I found her she was lying on the floor in the study with her finger in my lip balm! Of course half of it was missing and all over the carpet and her face. Her latest fad is wanting to write on everything especially Sam's leapfrog pad, so there are never ending fights between Sam and Paige.
Kevin has surgery today at 2.00pm Trinidad time, so we're sending him all our love and good wishes because we can't be there with him :-(
When we called today, Sam says to him "Uncle Kevin, what's wrong? I am so worried about you" out of the mouths of babes...........
Last dose of Cytarabine tomorrow then Paige's get a week off from all medicines.. hooray!!!

Happy Halloween

Paige started her week off really well, we visited her buddy Joseph to wish him a happy birthday, he turned 1 last Thursday. Even though she fell asleep in the car on the way there, as soon as we got there she was happy and charging around the house, smiling all the time with Joseph, he too seemed pleased that we were there.

This week Paige continues with her delayed intensification and has a lumbar puncture in the morning followed by Cytarabine in the afternoon. Her Cytarabine will continue for the rest of the week. Luckily this chemotherapy is a a short injection into her line, but she'll probably feel pretty crummy by Friday afternoon.

I must admit I am really looking forward to her maintenance, and she probably is too. She continues to be her precious self, ordering all of us around including me at night on the bed to move so she could have my space!

Sam dressed up as a pirate today for school and went trick o treating for the first time tonight with our good friends Elfrieda and Susie, unfortunately I haven't heard all about it yet cause he fell asleep on the way home, so stay tuned.

See you next year mama :-(

Paige though a bit sickie fared quite well with her Chemo this week. She even ate her dinner two nights in a row! She's also a bit steadier on her feet now, she was a bit wobbly after the Tuesday marathon. Her blood results done yesterday showed that her neutrophils have finally moved up to 0.3, which makes very little sense to me given her week of Chemo go figure! I guess now that her viral illness is gone they have recovered somewhat
Last night for the first time when Paige woke up in the middle of the night she got her taggy and walked over to our bed with a huge smile of her face.
Sadly after 6 months, mummy has to return home to take care of her baby and my best friend, Kevin who will undergo major surgery on Wednesday next week. It is always so traumatic when close family are ill and you can't be with them.
Anyway a huge thank you to my mummy for her unconditional love and support for the last six months, she will be missed by all of us. Including all the folks that had the pleasure of her curry and roti :-(

Happy Divali and the Chemo continues

Paige wasn't a particularly happy bunny today, she had quite a restless night and eventually woke up at 4.00am and was sick. She eventually fell asleep after 5.30am and some anti-sickness medicine. When she woke up she was not particularly interested in any milk. She's really clever though, if her tummy is ill she won't have any food. She also seemed quite unsteady today and fell over quite a few times. Her cytarabine continued today, with more doses tomorrow and Friday.
We celebrated Divali today for the first time in England, mummy cooked all the yummy food and I even helped with the sweets! Eveyone that came over really enjoyed the food and both Sam and Paige were wonderful hosts. By 8.00pm though Paige was completely shattered and needed her bed. The kids also loved the deeyas and they both looked so gorgeous in their traditional outfits.
Dr Mary Morgan called this afternoon with excellent news, Paige's flow cytometry results were in and it was all clear, so her leukemia is not back, thank god, her bone marrow is just recovering slowly. So our minds are at peace again and we can have some much needed sleep.
Good night all and may mother Lakshmi's blessings reach us all by the end of the day.

Longest Day Ever - Chemo starts

Today had been one of our longest days ever, we left home at 7.40am and returned at 8.15pm. Paige was scheduled for a lumbar puncture (LP) and at our review with Dr Morgan, it was decided that a bone marrow biopsy (BM) would definitely be done so that a decision could be taken by midday on whether her chemo could be resumed. By midday Mary had reviewed the results and was satisfied that Paige's bone marrow was clear and regenerating. Mary wanted to press on as much as I did.
Having only made the decision to go ahead just after midday, I was not sure what time the chemo would arrive on the ward. Today's chemotherapy consisted of Cytarabine and Cyclophosphamide. Cyclo requires hydration for 1/2 hour prior to the infusion, which takes another 1/2 hr, then more hydration for 3 1/2 hrs. So in total 4 1/2 hours!

I still continue to be absolutely in awe of our daughter, after having a LP and BM she was awake, smiling and so happy to walk around; normally she would cry for at least 1/2 hr after she woke up. 4 1/2 hours is a really long time for her to be hooked up to a drip on a trolley with the shortest line ever! But she played with her stickers and read books for 2 hours, of course by then she was bored. Lo and behold I set her on the ground and she started walking about and pushing her trolley all by herself! We were all dumfounded watching her walking around, I so wished that I had a video!! Her chemo will continue at home for the next three days.

There's always the risk of receiving sad news when on the ward for such a long time and today was particularly bad. One of the little boys that we met this year with a very rare type of tumor has now had two rounds of chemo with no success and is on his third round, if this doesn't work his parents will have to prepare for the worst. He turned 1 earlier this month, so tonight please offer up a special prayer for him, his name is Orlando, and also pray for strength for his parents so that they can cope with whatever comes their way....

Lumbar Puncture

Paige's had her first full blown tantrum today that lasted 15 minutes, she absolutely refused to wear any clothes and took off everything that I put on for her. She was then as quiet as an angel and no one at the hospital believed me! Her neutrophils have increased to 0.1 up from naught finally so her lumbar puncture is a go for tomorrow as well as another bone marrow to determine why she is recovering so slowly. As soon as she gets to a minimum of 0.4 she can complete her chemotherapy for the block.

Discharged but still no neutrophils :-(

Paige was discharged on Saturday afternoon after she was switched to another anti biotic that is required once daily. We promised to return for a review, bloods and more anti biotics on Sunday, as well as clinic on Monday. She hasn't had a temperature since Friday but her runny tummy continues. Despite it all she continues in her good spirits boldlg taking things away from Sam and bolting off with it. She even orders me around with "Move" or "back" if I taken away something that she shouldn't have.
So we will be back at QA tomorrow at 1.00pm for another review, more bloods and another dose of anti biotics. Poor child she just never gets a break from meds :-(