Back on Track

Clearly my daughter decides when she would like to start her Chemotherapy and when I've had enough frustration. Certainly the last couple of days have been extremely frustrating.

Yesterday we headed down to QA after dropping Sam off to school at 1.00pm as planned and we encountered the same issue of her line being completely blocked, so the Starfish Matron Lorraine who was looking after us yesterday quickly arranged for an X ray to be done. By 2.15pm X ray was done and we waited for a plan, and we waited, 2 hours and some later we were still waiting and by then even the chair and buggy blocking the door couldn't hold Paige in the room anymore. Of course our little miss Paige can now open doors all by herself! Finally we were told that if they could not clear the blockage with another dose of Urokonaise that she would be scheduled for a replacement Central Line on Thursday. A replacement means surgery, an overnight stay at Southampton General, not to mention the stress and trauma that goes along with it. A full blood count was also needed and that was taken one tiny drop at a time from my poor daughter's fingers :-( She was not happy about that at all, and neither was I. It was all too obvious to me however that they were all stumped by the blockage.

So again after dropping Sam off to school this morning at 9.00am, Paige and I reluctantly headed down to QA to meet with Wilf for Day 3 of the blocked line. Finally after much effort from Wilf we had blood!!! Plus her blood results were back and she has a whooping 1.7 neutrohils - YAY. Piam Brown confirmed that Chemo could start today. So after a further infusion of Urokonaise we left QA at 1.00pm and got to PM by 2.00pm. Unfortunately we weren't seen till 4.00pm and Chemo didn't start till 4.30pm, but hey we started delayed intensification and Paige is in ripping form.

So after three very frustrating days, and lots of hanging around doing nothing for hours, Paige has finally started her last block of intensive Chemo and we're chugging along again.
Today she had
1. doxorubicin - the chemo that makes her hair, eyebrows and eyelashes fall off,
2. vincristine - the chemo that makes her walk on her tippy toes.
Plus seven days of the dreaded dexamethazone, which is the steroid that makes her COMPLETELY miserable and out of sorts. Later this week she'll have Peg Asparaginaise which is 'intra muscular' and very painful.

So a special thank you to Elfrieda your payers worked really well and we are back on track. Now some much needed sleep for me....

Central Line Blocked :-(

Paige and I were supposed to be enjoying a quiet day at home and had been previously excused from attending clinic at the the QA this afternoon. Clearly Paige had other ideas! When the community nurses arrived at 11.00am for routine bloods and a bung change, there was no blood in sight. We hung her upside down, sideways, jiggled her about, got her to run up and down and play but no luck. We were obviously destined to go to QA today. So we met Wilf at noon and he administered a drug called Urokinase which was quite a fiddly job, but she was really good. Anyway, we were back home by 2.00pm and we have to return tomorrow, 24 hours later to see if the drug has worked. Fingers crossed that it does, otherwise we'll need a four hour infusion of some sort. Didn't pay attention much as I really need this first drug to do the trick. 
She's been so well over the weekend, eating and drinking and playing loads with everyone.


Enjoying some strawberry jam and a serious look....

and today settling down with a lactose free chocolate and Samuel's baking hat!

Her hair has grown so much, it actually felt odd when I had to shampoo it recently :-).


I was quite looking forward to improved results and finally being able to resume her treatment this week... Wishing us good luck for tomorrow.

Chemo still delayed

Wilf phoned this morning with Paige's blood results and it's not good, she still has no neutrophils whatsoever and her Chemo will be delayed for another week. This has happened so many times that we should be accustomed but it is still extremely worrying to me that she takes so long to recover. You can tell that she feels like crap though, she's very clingy and wants to be held all the time. My arms are about to fall off from holding her so much. Her appetite has dipped a bit as well, again, all goes with having no neutrophils. Please note that when I say no neutrophils I mean it's so low it won't even register!
Struggling to find the brighter side at the moment........

Back at Hotel QA

Yesterday all went well with Paige's Lumbar Puncture, and Samuel was actually quite helpful at times in terms of distracting her and also holding open the doors for me. Paige showed Dr Bevin how to use her stethoscope and then lifted her shirt so that Dr Bevin could have a better listen, so funny!
Anyway we came home and played then Paige went down for a nap, she woke up at 4.30pm crying and boiling hot, she had a temp of 38.5C, so we were off to the QA. She met the criteria so we'll be there for a minimum of 48hours until the cultures are back. Her neutrophils are also still quite low at 0.1 and her CRP is 7, so something is going on, we just don't know what it is yet.
I must say though that the team at QA really spoil her, the play specialist came bearing gifts of a brand new tinker bell dress as well as duplo and cars for Paige to play with.
So we'll be in the hospital for the next couple of days

Delayed Intensification II

Never a dull moment with my Paigey Lou. She's started to potty train herself, she wanted to sit on the toilet yesterday so I took out the potty. Then today every time she needed to do a poo she took off her trousers and sat on the potty with her nappy and did a poo. She did this three times by the way! She is so clever my daughter :-)

Anyway Paige was due to start her delayed intensification tomorrow with an Lumbar Puncture followed by Vincristine and Doxarubicin in the afternoon, this is the Chemo that makes all her hair fall off :-( But her neutrophils are too low at 0.1 to start, so after being told everything was cancelled, we've now been asked to bring her for the LP tomorrow and we'll test her blood again next week and hopefully start her Chemo next week Wednesday. Whilst I'm really not looking forward to this last intensive block, I am quite disappointed about they delay. Last time her hair, eyebrows and eyelashes fell off.

Paige is looking so well now, despite her low count. Her poo finally made it to the lab and it has tested positive for sugars, it now needs to be analysed further to determine the specific sub-type. This apparently will take weeks to be completed. So tomorrow we'll aim to get to Piam Brown bright and early at 8.00am, so that Paige is first on the list and we can come home early. In an effort to keep Sam in the process he'll be going with me to the hospital for the first time, good luck to me.

Happy New Year

Happy New Year to everyone (albeit a couple of days late!)

Paige ended the year with a very sore tummy and neutrophils in the pits. She is very clearly lactose intolerant to the point where 2 oz of milk has a severe impact on her...poor little heart :-( Fortunately she seems to be on the mend and had gained a small bit of weight and her neutrophils seem to be on the rise. I am not convinced that her sore tummy is only due to a lactose intolerance but the consultant has advised that we need a clear week of no lactose to confirm same. luckily she did a poo at clinic so they now have a 'fresh' sample to test. Her previous sample was lost in transit.

Her final block of intensive Chemo begins on Jan 10th, so not such a great way to start the year but at least it's hopefully the last intensive block and she can then move on to long term maintenance.

Here she is having juice instead of her usual milk for breakfast

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!!!