29 November 2011

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 :-)

18 November 2011

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!

16 November 2011

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.

14 November 2011

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!

13 November 2011

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 :-)

10 November 2011

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....

6 November 2011

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.

3 November 2011

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!!!