30 July 2011


On Thursday night Paige woke up at 2300 crying..and with a temperature of over 39C. In a healthy child a fever is not necessarily something to worry about (Sam used to have high fevers or 40 and up), simply a sign that the body is fighting infection. Unfortunately for Paige, her first line of defense against infections has been severely depleted by the treatment (actually, her neutrophils were 0.9 on Monday, so we was not technically neutropenic, but the average person has a neutrophil count of 4). 

So it was off to the hospital. The procedure is to take blood, send it off to the lab and immediately start a treatment of broad spectrum antibiotics (in this case Gentamicin and Tazocin). It takes up to 48 hours to determine exactly what the infection is, but in the meantime the drugs do the job of the neutrophils.

We have been quite lucky to far: more than three months after Paige was diagnosed and this is the first time she has had a fever. Since the 28th of April, and apart from treatments, tests or lumbar punctures, she has only been in hospital twice, both times for suspected problems with her central line. And she was out within a day.

No such luck this time. The consultant has indicated that Paige could be in the hospital for 3-5 days, although in between doses of antibiotic she and Lisa may be able to come home and visit (the hospital is only 15 minutes away).

In the meantime Paige does not look unwell at all, thankfully. When I went to visit them this evening she was walking around the ward with the help of a walker, keeping the staff entertained! She is not eating very well, and getting milk in her is a struggle, as usual, but she is still smiling.

26 July 2011

Green light for Chemo

Paige had quite a busy day yesterday, she woke up at 5.30am, had some milk and grabbed some more shut eye. The community nurse arrived bright and early at 8.15am to take bloods. Then the Health Visitor, Lorraine arrived at 11.00am for Paige's 1 year health check. She's doing alright on most fronts with the exception of speech which is a bit behind. She should be able to say at least 3 clear words by now and babble to herself. She used to say Papa but has now stopped since her grandpa left, and she definitely doesn't babble all day long! She'll be reassessed again at 18 months and a plan will be made then in terms of whether she needs a speech therapist or not.

By noon Wilf the oncology nurse at QA, rang with good news, Paige's neutrophils are up to 0.9 and she can start chemo again, so good news that we can crack on again, but not so good for Paige who was really enjoying her break.
In terms of Paige's moods and behavior she is relentless, when she wants something she goes for it regardless of where it is or what's in front of her, she'll clear the way and just go for it! So nothing is safe books, photos, pretty much anything that she can squeeze into her mouth and she even started biting into Sam's toys! Of course he's not too pleased. She's also started using her ride along toy and the rocking horse, all good signs that her confidence and motor skills are improving.
So oral Chemo for the next couple of weeks and no scheduled visits to the hospital till August 8th - she even gets a break from the doctors and hospitals :-)

23 July 2011

Treatment Lull

My beautiful baby girl is now an absolute monkey! she climbs everywhere and on everything, she has also learned how to climb back down and this includes the stairs! Her mood has definitely improved, she's eating better or rather like a normal 13 month old and plays really well on her own. She also incites mischief when Sam is around which is quite often.
In terms of treatment there's a definite lull and it almost feels like Paige has dropped off the priority list, after a couple of phone calls, I have now been visited by our POONS (Pediatric Oncology Nursing Specialist). I'm advised that it's not unusual for the blood recovery to be quite slow and a waiting period of up to 5-6 weeks can be tolerated before Chemo begins again. Of course this only had a marginal effect on reducing my anxiety and I'm not clear how it affects Paige. So bloods will be taken again on Monday at 8.15am and a decision taken. If her neutrophils are at the required 1.0 she'll start her oral Chemo next week.
I flushed Paige's line for the first time this week on Thursday, I was a bit nervous being caught off guard but I have now been signed off. The main reason for learning is that Paige's clamp has been found opened every day several times a day, but only for short periods. What happens is if her line remains un-clamped for long periods, blood can flow through and cause blockages, and/or possible infection. So it's quite important that the clamp stays closed. If found open and I'm not sure for how long it is required to be flushed through, the good news is that this event will no longer require a trip to the QA! .
Paige has been mostly house bound since she's been diagnosed due to her compromised immune system and poor Sam has also suffered because even though he is a healthy, active 3 year old. Is this fair to him? probably not so we've decided that he should have treats sometimes too and today was his first, we took him to the cinema for the first time to see Cars 2 in 3D and he really enjoyed it, he didn't even fuss much and we actually watched the whole movie, quite a treat for Russell and I as well to be out and at the cinema :-). Paige on the other hand was none the wiser as she fell asleep 15 minutes after we left and woke up about 20 minutes before we came home!
Tomorrow we'll do some finger painting ......

19 July 2011

Chemo delayed

Paige's mood has definitely picked up and she's in the mood for trying new things. She now prefers drinking with a straw including her formula which is fantastic because she's finally nearing her daily fluid requirement of 600mls. She's also managing two decent meals a day with a snack at lunchtime. Her blood count unfortunately is quite low, namely her neutrophils which is at 0.3, much too low to start her oral chemo this week. The main cause seems to be her runny nose which could knock her count down. So much for last minute shopping or taking her Papa out for a meal before he leaves bright and early tomorrow morning!
I still think she is amazing though, all through her grief and pain, she manages to smile and dance to any sound including the hum of Sam's electronic toothbrush when he brushes his teeth in the morning, but I think her favorite tunes are those on her Dora book that her Aunty Gail sent for her.
Sam on the other hand has a much improved behavior and must be the most polite child. I made him some pasta yesterday and put cherry tomatoes in it because he saw them on the counter and told me he really liked them. Anyway I said "Sam I put some tomatoes in your pasta" and his response was "that's very kind of you mummy, thank you" imagine my surprise :-).
I haven't been given the revised plan for her yet but I am expecting that more bloods will be taken later this week.

17 July 2011

Steriods now complete!

Paige continued to be grumpy for the last couple of days and this also included screaming for 45 minutes on Friday and Saturday at 11.30pm. She seemed so distressed on Friday night I was almost in tears as well wondering should I call QA? what will I say Paige is crying but doesn't have a temperature or redness around her line and I can't settle her? In the end I walked around the house with her gave her some toast, codine and a bottle and she eventually settled at 12.45ish.
She obviously feels like crap but can't tell me what she needs to make her feel better so when she cries at night I now automatically take her to our bed and hold her till she falls asleep, she no longer sleeps in her cot at night, she just has a wee nap from about 8/9 till 10/11 ish then it's time to cuddle with mummy for the night :-)
At least her course of steriods is now complete. Tomorrow she's due blood tests and if she is up to a neutrophil count of 1.0, she can start her oral chemo.
She's still not eating much but managed to try some of Papa Boyz' roti and curry duck today, yummy -). Kathy also spent the weekend with us and that kept Sam quite busy and entertained!

14 July 2011

Grumpy Paige

Dexamethazone (dex) is the steroid that Paige will now enjoy for 5 days, I was really looking forward to this because I remembered how well she ate the last time that she was taking it, but I must admit I forgot how grumpy it made her. Picture this she had Vincristine on Monday, this makes her jaw and tendons hurt, a  lumbar puncture and bone marrow biopsy on Tuesday, which makes her really sore, combined with dex which is know to make you feel completely out of sorts and grumpy, and an oncoming cold and you get one seriously GRUMPY baby!!

She must also have a sore throat because she's only interested in jelly and fromage frais, but she did manage to eat some of mummy's curried channa and potato today, her first real curry :-)
Also because she was in such a bad mood I was not able to flush her line today after I've been practicing for the last two weeks. As the oncology nurse Sharon said, 'Lisa we'll be setting you up to fail if you tried today' she also commented on how unsettled Paige was cause she hasn't seen her like this before.
Poor Paige, life just seems more and more unfair to her .....

13 July 2011

Interim Maintenance Begins

Paige enjoyed a brief, small but very special birthday party on Sunday which included her grand parents, Joanne, Eilis, Kathy and Joseph her only little buddy, he was diagnosed a couple days after her and they share a very special friendship. Pictures will be posted soon, but there are 2 shots on Joseph's blog as Celine took the photos! I lost my camera just in time for the party. 
Paige started her next phase of treatment on Monday with a IV shot of chemotherapy called Vincristine, this particular drug has know side effects of jaw pain and weak thighs, not very useful for someone who's learning how to walk and teething! This phase will last for 8 weeks and is meant to be a bit easier for all of us. It will also give Paige a chance to get ready for the next phase which will be quite intensive.
She had a lumbar puncture and Bone Marrow done yesterday and results are due tomorrow, we are expecting that she continues to have a clear bone marrow and spinal fluid - fingers crossed.
Her neutrophils are quite low at 0.3 so that her oral chemotherapy, Mecaptupurine will be delayed till next week. She will continue to enjoy another chemo free couple of days - yay, which I know she's just loving. She needs to have neutrophils of at least 1.0 to begin. Of course the consultants are not worried because she has started 5 days of her steroid Dexamethazone which will push her neutrophils up!
The next few days may be tricky though as I've now got a cold as well as Sam and Paige has a runny nose, Trying to stay away from her whilst in the same house is difficult if not impossible.
Strange though as Paige finally slept through the night on Monday for the first time since we've been discharged. Russell and I even enjoyed a 'Date Night" (on the insistence and encouragement of my parents) on Monday which included a quick dinner and a movie! it felt good to do something normal :-)
So onward we march into the next phase with my very brave, strong child who continues to astound us with her positive attitude and to this dreaded disease.......

9 July 2011

Aunty Joanne & Eilis are here

I think that Paige knew that Joanne and Eilis were due to arrive yesterday and she was soo excited that she woke up at 2.30am and decided that she should play till 5.15am! Not only did she play, but also managed to climb off the bed and head straight for my parents room, banging then pushing the door open all the while calling her papa :-).

Paige really hasn't had the opportunity to play with someone her age, she and Eilis played so calmly together (Sam was at the childminder) and she kept smiling at Eilis and you could see her thinking hmmm, she's walking around, maybe I should try that as well.

Joanne and Eilis are here for the weekend and we're planning for a small intimate birthday celebration for Paige tomorrow. Since Paige had had her transfusion this week, she has really got some more color and energy now and isn't falling over as much.

6 July 2011

Got Blood ?

The consultant and I tried really hard for Paige's blood to recover on their own and they rose slightly from last Thursday to Sunday, but started to fall again on Tuesday, so the decision was taken to transfuse her today. She received 150mls slowly infused over 3 hours. It was a pretty seamless. We arrived and they were ready for us, Paige played, ate her lunch and of course fell asleep when she has just 1/2 hour left of her infusion. She was bright, chipper and quite flushed after wards. She also wanted to visit her buddy Joseph who was also just admitted to QA. It was amazing to watch her caressing and smiling at this little boy who is 5 months younger than her.
Paige can now enjoy her week off until next week Monday when "Interim Maintenance" begins with Chemotherapy on Monday followed by a Lumbar Puncture on Tuesday. So I'll sign off till then unless anything major crops up.

3 July 2011

Fun on the trampoline

Madame had lots of fun this weekend despite having low hemoglobin and probably needing a transfusion by Monday. As you can see on the left she loved jumping on the trampoline, even though her foot never actually leaves the ground. We took her to the beach and she had a long ride on her bike and even went down near the surf but wasn't allowed to touch anything! By this afternoon I am convinced that she's definitely reached the 'monkey stage' climbing on everything including her brother's chair. Finally on my little superstar's way to bed tonight she stopped after climbing every two stairs to way goodbye and smile at her grandparents. She gets into all sorts of mischief now and it is always accompanied by the most beautiful smile :-).

2 July 2011

No Transfusion just yet

Paige had a lie in today and woke up at 6.00am, then fell asleep again and woke up at 9.45am. She is really tired now and is severely unhappy if I am more than 2 feet away from her. She had her final dose of Cytarabine today and screamed the entire time because we had to wake her up. I haven't seen her cry/cream like that since her first dressing was taken off and she was absolutely terrified, it broke my heart to watch her today and the nurses were pretty distressed too. But the silver lining in all of this, is that her illness hasn't broken her spirit. Even though she is visibly tired. Poor thing she's loosing her balance easily and isn't interested in climbing up the stairs anymore.
Anyway, after speaking with Dr Milard at QA she advised that we should hold off on Paige's transfusion until the sooner of me reporting that she is ill or unhappy or her hemoglobin falls below 6.0, she's currently 7.2.  So we'll take her down to QA on Sunday for a follow up full blood count and make a plan for next week based on that. She has her last dose of oral chemo, mercaptupurine on Monday, so if she can maintain her current blood levels till then she'll hopefully avoid a transfusion. As Dr Millard said 'we just shot her blood will some really big guns"