25 September 2011


Early entry today....

3 weeks on and this block of Chemo has not let me down in terms of how challenging I expected it to be. Of course everything is more complicated by the fact that Paige has an infection and requires daily IV antibiotics, so we've now been to the hospital everyday since Tuesday last week and we are due again tomorrow. Paige is still completely distressed and not herself at all, I can now see the teeth poking through her gum, so hopefully the worst of it is over. I've now been taught how to draw up and administer her IV anti-biotics so hopefully next time if she's well we'll have less trips to the hospital.
5 months on and her treatment is really starting to take its toll on all of us. I'm beginning to both feel and see the signs of both physical and emotional wear and tear on the entire family. Paige keeps trekking on and so do we....
This is her week off to recover and if her neutrophils are above 0.75 by this friday she will begin her next round of Chemo in this block next week with a lumbar puncture, followed by Cyclophospamide and four consecutive days of Cytarabine, as well as Mercaptupurine.

22 September 2011

Paige is not a happy girl

Poor heart, Paige is obviously feeling ill, it could be becauset she just had her third round of chemo, or that she's coming down with something, has a nasty line infection or maybe she's teething. Whatever it is, she is not a happy camper at all. She's also not eating despite the large dose of steroids that she's taking. She's spent most of her day crying and being severely unhappy, haven't seen her like this for awhile.
In addition to a rough day when the community nurse arrived to give her her anti-biotocs she expected that I had the drugs which I didn't.The hospital never informed the community team that they needed to pick up the drugs, so the poor nurse had to leave the house collect the anti-biotics all the way at the hospital and then come back home to administer it, on top of this the pharmacy put the wrong concentration of heparin (200 units in 2ml instead of 50 units in 5ml - 10 times stronger!!!) this is an anti clogging agent that is administered after Paige's central line had been used. Good job the nurse knew what she was doing!!!! I certainly won't be leaving the hospital without her drugs or prescription again. I guess they figured that we don't have enough shit to worry about so they'd like to give us some more.
We're off to see the consultant tomorrow and hopefully her culture results are back as well and we'll have a plan for the next couple of days in terms of anti-biotics usage and hopefully what's ailing her.

21 September 2011

Overnight at Hotel QA

Yesterday Paige was due her third dose of vincristine and doxarubicin at QA at 1.30pm. When I changed her I noticed a very red, angry looking line site that appeared to be swollen as well. Of course I packed our bags and headed down to QA, I must admit I was quite worried having not seen her line like that before. One look at the line site and Wilf agreed that one of the consultants should have a look, luckily though she didn't have a temperature. Louise looked at her and prescribed anti-biotics, this time we're using a non-penicillin based drugs given Paige's previous rashes. They also decided that she was clinically very well and we should go ahead with her chemotherapy. This anti-biotic is needed every 12 hours for the first 24 hours and daily thereafter, so I was given the option to spend the night or go home. I opted to spend the night and be safe.
Mummy is still here so Sam is well looked after. Sam's childminder Laura, the gem that she is picked up Sam from pre-school on Tuesday and was also happy to drop and pick him up on Wednesday, so we were all sorted - Thank you Laura!
Paige got a mystery rash at 6.00pm that disappeared within 15 minutes, so additional bloods were done at 2.00am when her anti-biotics were due. She has not developed a fever and her C Reactive Protein is less than 5 so we were discharged after her anti-biotics at 2.00pm today. The results of her blood cultures will not be available for 48 hours, so she will continue to have daily anti-biotics until they're in, they're expecting that she'll need another blood transfusion soon so we're back at QA on Friday morning at 10.00am for a review.
Our stay at QA was uneventful this time round and the nurses and other staff assigned to us were very attentive, accommodating and very much on the ball with her meds and needs. We stayed at The Shipwrecked ward which is the post surgery ward rather that the Starfish ward where we usually stay, not sure if that made a difference? Now that Paige is on the move it was quite difficult to keep her both entertained and in her room but everyone on the ward helped to keep her smiling and happy.
Anyway we're back at home and Paige's line is looking good and she is fast asleep, poor heart she didn't have a good night last night and didn't get much sleep either. She's also on day 2 of dexamethazone which isn't going to help her mood :-(

18 September 2011

This week

Paige has had a decent couple of days she's eating alot better and seems quite fond of meat, any kind of meat pork, chicken, turkey, sausages and even prawns. She will only eat the meat though and leave everything else on her plate. She's absolutely not interested in milk anymore except in her cereal. She's walking really fast now and also learned how to have a tantrum, throwing herself on the ground and banging her head on the floor in the process. She still has the most beautiful smile and she's generally in good spirits.
This week on Tuesday she has her third and final dose of doxorubicin and vincristine at QA. This will be accompanied by 7 days of dexamethazone, the dreaded steroid which makes her miserable, causes insomnia and makes her very grumpy and hungry all day. This week may not be much fun :-( Then she has a week off to recover before starting her next lot of Chemo.

13 September 2011

Heavy Chemo Second Dose

Finally the week of Dex is now over, poor Paige had insomnia last night and didn't go to bed till 10.30pm, this is after being up at 6.00am, so a really long day for me. I think that the week of Dex has made us both weary and a bit worn down, I must admit I'm starting to feel the wear and tear of not having slept through the night for the last seven days and 5 months :-(.
Anyway, Paige continues to be in very good spirits flirting with her Nurse while he administered her  next round of Chemo which is infused over an hour. Chemo today is called Doxarubicin and is quite toxic for the first 24-48 hours. Tomorrow will require diligent doses of anti-sickness every four hours so that she isn't sick. We've already had a small 'domit' this afternoon. (A domit is Sam's name for being sick). She's moving around really fast now, almost running and she can walk around in her Wellies, clearly she has decided that this treatment is not going to slow her down. You go girl!!
Hopefully we'll have a quiet rest of the week, she had a small temperature this afternoon that went back down to normal by bedtime. No more treatments are scheduled this week. Next round is due again next Tuesday at QA.

11 September 2011

A sumptous lunch followed by an afternoon out

My darling Paige was very unhappy and particularly grumpy today, (day 6 of Dex). She ate reasonably well, and she's definitely her father's daughter. She absolutely enjoyed and demolished the delicious pork that her daddy cooked today. So despite her low neutrophils, we went to Victoria Park for the Piam Brown's children fun afternoon. Both kids had a fantastic time riding on the small train and then on to activities and tea in the function room. Paige spent most of the afternoon roaming the grounds and toddling around the room with her Aunt Rosemary who came over for lunch today. While Sam and I enjoyed the games. Of course Andrew and Russell stayed at home to watch formula1 and drink beer. So a good day was had by all and my two tired but happy kids are off to bed.
This entry however would be incomplete without a big well done! to my husband who made the most delicious lunch all by himself, I simply set the table.

 cream of butternut squash and coriander soup, with homemade herb bread
smoked pork loin with a mushroom risotto and roasted red peppers
rum souffle with home-made rum & raisin ice cream (heavy on the rum)

10 September 2011

Last Couple of Days


On Thursday we headed down to QA for Paige's Peg Asp, which is chemotherapy delivered via a slow injection into the muscle in her thigh. Russell reckons that both Sam and Paige have inherited their grandma's meaty thighs, so that always holds them in good stead when they have to receive jabs. The nurses are always quite pleased with what they see :-). Of all her treatments though, this was by far the worst, the poor heart screamed the entire time turned bright red and broke into a sweat. Needless to say Wilf, her oncology nurse says that other kids have said that it's feels like concrete running down your legs and that Paige may not walk for about 24 hours. Ha! 10 minutes later she was walking about and trying to get to the general play area because there was a little boy playing there.....as always she never ceases to amaze us. She had a decent rest of the day, ate well and slept ok, as long as I was next to her. Her blood is on it's was down as is expected, her nuetrophils are a mere 0.2.

Paige is now walking around with her hands behind her back just like my father :-) It's so peculiar to see her doing it especially since he's been back in Trinidad since July. She's also learned how to nod 'yes' when asked if she wants more jelly or chocolate pudding. Her spirits were a bit better today but she's still pretty grumpy and clingy. My shoulders now ache from holding her so much while doing other things like cooking. I've got some highly developed arm muscles now ! She's seems to be getting steadier on her feet, then she falls over. The steroid also seems to have finally kicked in and she's eating a bit more and looking a bit better so the weight could be an additional reason for falling over.

Paige didn't have a good day today at all. She started of well though had a really good breakfast. Then bam! she fell over sideways and got a nasty bump just behind her ear. Half hour later she bashed her face on the ottoman and bruise number 2. One hour later she managed to get a gash on her knee that no-one could explain. By then I took her upstairs for a nap. I set her on the changing  station and she threw her head back and manged to miss the pillow and hit the edge of the cot instead - by now someone might be calling child services! Anyway she refused lunch which is normal on weekends when she also has to have her preventative anti-biotic. Finally she fell asleep at 1.30pm and woke up creaming at 4.30 till about 5.30pm. She stayed grumpy and must have also had insomnia cause she didn't fall asleep till 9.00pm. (we were in bed at 7.30pm) So finally this day is over, but on the upside she weighs 10kgs in a nappy only on the bathroom scale - yay!

8 September 2011

Day 3

Paige had a much better than expected sleep last night, of course it helped that I left her in our bed rather than her cot. She had a slightly better day today, didn't throw up and had at least two good meals. I'm not sure if it's cause she's feeling better or because I was much more vigilant with the anti sickness. She's not needed it before so I always try not to over medicate her. She's not too pleased about having medication every 4 hours though. Worst of all I think that she really doesn't know what to do with herself with the high doses of the current steroid. Her oncology nurse Wilf said to me 'it messes with the kids physiologically', but what does it do to a 14 month old ?? Anyway just a couple more days. Tomorrow she has what's called Pegylated Asparaginase which is a chemotherapy drug that is administered via the muscle, it will be done at QA. Russell held her for her last two so I'm not looking forward to tomorrow at all, but I'm sure Paige will keep me calm. We'll need to stay for an hour after the drug is administered to ensure that there are no allergic reactions.
She's becoming a proper little girl now and throws tantrums if she can't get what she wants and this includes but is not limited to throwing herself on the ground and having a good cry tears and all, if I won't let her go outside.
Her big brother Sam continues to love his new school and came home with smiley faces for being 'a good listener' and 'doing good work'.
It was pretty amazing to watch as he walked in the door this afternoon, Paige toddled over straight to him and held her arms out for a big cuddle, they both just stood there in the doorway holding each other for a couple of seconds, the most beautiful sight in the world........

6 September 2011

Delayed Intensification - Day 2

Paige didn't have such a good day today, she's completely dis-interested in food and vomited twice today, which she rarely ever dose. Once all over me just as I finished dressing after my shower and then again later in the day. She is now extremely wobbly on her feet, but she's so clever that she's figured that out alreday so she walks near to something to hold on to! Poor heart she's already feeling horrible with the Dex and won't let me out of her sight! I picked up the keys to collect Sam from pre-school this afternoon and she headed for her shoes:-). She's also not happy taking her anti-sickness either which is due every 4 hours, so all in all not a great day for her and this will dictate the pattern for the week. I'm expecting her to wake up creaming anytime now so this will be a short entry.
Day 2 for Sam was smooth sailing, this time I left him at the door and he kissed me goodbye and said 'bye mom, have a lovely day' I could see him through the door telling his carer 'should I put my water bottle away in there' pointing at the crate where all of the water bottles are stored. Then when I picked him up this afternoon he had home-work!!!

First Days are her again

We got to PB at 10.30am all set for chemo, except the pharmacy had other ideas, Chemo didn't arrive till 12.30pm! In the meanwhile Paige kept herself busy walking around for all to see and made friends with the sisters of a recently diagnosed other little girl. The infusion took one hour and we were given the all clear to leave soon afterward, except for another trip to the pharmacy to collect Paige's Dexamthezone, a steriod that she will take over the next 7 days and be completely miserable but hopefully her appetite will increase. 
Paige seemed nonplussed by the fact that she had Chemo and seemed fine all afternoon, she is however a bit wobbly on her feet.
Sam settled in quite quickly at pre-school, he asked me to stay for '2 minutes' which turned into about 20. He's such a big boy!

4 September 2011

Delayed Intensification Began

Paige had her Lumbar Puncture and Bone Marrow ant PB last Friday, it was brought forward from this coming Tuesday due to training day to be held on Tuesday. So her Delayed Intensification officially began on Friday. I was quite apprehensive for her but as it turns out she was absolutely fine. She woke up about 1/2 hour after coming out, cried a little bit then drank some milk, ate a brioche and was off. I'm not sure that she realised that she had just had a general anesthetic because she was wobbling around the ward and causing quite a distraction. The doctors and nurses were all amazed at how well she looked and the fact that she could toddle around! So much for me being worried for her.
She had a good weekend, walking around a bit more steady now, while using her hands for balance. Based on her blood count done on Friday, she's been cleared for Chemo. She starts tomorrow with Doxorubicin and Vincristine at Piam Brown. 'Dox' as they call it is the 'big gun' and she will have three successive doses, one per week. This week she will also have Peg Asparaginase which is intra-muscular and will be done at QA on Thursday. So with a heavy heart we say goodbye to interim maintenance and start this third but second to last block of intensive Chemotherapy.
So tomorrow is a big day : Sam has his first day at Pre-School and he is so excited, while Paige starts another block of intensive drugs where all her new beautiful hair will fall off again :-)...Good luck to both of my babies