30 August 2011

This Week

Paige will enjoy 4 Chemo free days this week - hooray! It was certainly easier this afternoon for all of us when she could have a leisurely dinner and pick whatever she wanted till it was time for her bath. Usually she has dinner, one hour later she is given her oral chemo, then we have to wait for another hour until she can have her bedtime milk. Apparently this particular Chemo is metabolized better on an empty stomach.
We head on down to QA tomorrow afternoon, to have a check up and bloods done.
Her Delayed Intensification 1 starts with a lumbar puncture and bone marrow this Friday. This will be her third block of intensive chemo and her doses will now be increased to the normal level, she was previously given 75% of the dosage because she was less than one year old.

26 August 2011

Quiet Week - Big News "I'm Walking"

Paige had a relatively quiet week, it started with a visit from the community nurse on Monday. Her neutrophils are down to 0.7, so that means she will primarily be housebound again. Paige has been cruising around the furniture for a while now and on Tuesday she simply got up and walked across the living room floor to meet me! Of course she's wobbling around like a dunk child but we are so thrilled that she is walking despite her chemo which affects her tendons.
She is also particularly pleased with herself and has this knowing smile every time she walks around. Of course now that she can walk, she no longer wants to crawl up the stairs but rather hold on to the rail and walk up as well. Her appetite unfortunately is waning again and she has lost some weight she was down to 9.75kg last week and has probably lost some more weight now. She fed herself today, another milestone for her, she obviously knows that an intensive block starts next week so she trying to get alot achieved this week. She continues to be her very sweet, stubborn, independent self. She's a girl who definitely knows what she wants and that includes a hand bag, hat and coat before she goes out. She's also learn't how to throw a really good tantrum if she can't get what she wants or help pick up the pieces if she's done something wrong. We thought we had ours hands full with Sam, clearly we've not seen it all :-) Paige also blows her nose and shuts the bedroom door when she is ready for a nap!



First steps

video

21 August 2011

A proper day out!

Paige's neutrophils were quite good at 1.8 on Monday last, after having a week of steroids. So Russell took two days off so that we could salvage some of the summer and take the kids out. We went to Paultons Park yesterday, but it seemed that everyone else had the same idea! There was traffic from the motor way, all the way in, then a long queue for the tickets and again for the 'priority pass.' If you're disabled or have a serious illness you can request a pass to skip the long lines. Thank god we did that or we would have done maybe two rides in 5 hours! Paige and Samuel had a fabulous time. It started with a helicopter ride where Paige sat on her own, of course all four of us were on it.
It felt so good to do normal things and for a day (even though there was a reminder at each ride). We were able to cast our illness aside and enjoy the sunshine and laughter of the children as we rode on the helicopter, car, train and then a boat, all in 'Peppa Pig's World". All the rides were done together as a family. Paige seemed so happy and Samuel was absolutely beaming at each new ride. Samuel and I did some extra rides on our own while Paige and Russell rested for a while.
Paige is standing on her own much more now and taking a couple of steps, I am hoping that she starts walking before her next block of intensive therapy which is scheduled to start on Sept 2nd with a lumbar puncture. Not looking forward to the next block but needs must.... 

14 August 2011

Dex is completed

The last 5 days have been absolutely miserable for Paige. The steroid, dexamethazone makes her extremely grumpy and just plain old miserable. She cries for at least 45mins, 5-6 hours after she's had the drug and is absolutely inconsolable. This includes a stint at night where she wakes up screaming and continues for about 30-45 minutes or so before she gabbles a small bottles of milk and is off to sleep, only in our bed of course.  Poor Russell has been evicted !
Paige got beautiful presents from her Uncle Richard this weekend, a personalised blanket and plate, along with a matching stuffed giraffe and new travel bag - thank you Richard :-)
She also rode on the Watercress line steam trains today and she had a fantastic time, she is always so happy to be out and about, especially if it's not to the hospital!
This week should be a better week for her , it starts off with a trip to the QA tomorrow for a check up and then she continues on her mercaptopurine (oral chemo) this week.

9 August 2011

Lumbar Puncture Today

Paige had her Vincristine yesterday, followed by a lumbar puncture today. All went smoothly and she slept for 45 minutes after her puncture. This was an absolute godsend because she is required to lie still and flat for at least one hour after the lumbar puncture which is always an impossible task with Paige. She was also in good spirits immediately after, even though she was a bit groggy, which is understandable after a general anesthetic.
She started her dexamethazone today, a steroid which hopefully will increase her appetite but also makes her extremely grumpy and demanding ! So we'll be in for a rough 5 days!
She finally fell asleep after an hour she seems pretty uncomfortable tonight, hopefully she'll get some rest tonight. She will continue to enjoy her interim maintenance now until September 2nd when her next lumbar puncture is due.

6 August 2011

My Big Girl

Quiet day today. Paige has started to experiment more with her food and still isn't eating much but at least she's trying. She's even more mobile now trying to climb onto everything which includes the window sills!
She still continues to amaze us with her bravery and co-operation. Every afternoon I mix her Chemo and she comes over and sucks down the contents - truly amazing.
Then tonight after her bath I decided to change her dressing all by myself, to my amazement and surprise as I started to peel off the dressing my "Big Girl" raised her arm and kept it raised, all the while keeping still - we are truly blessed to have such an awesome daughter :-).
Looking forward to the weekend and enjoying some time out doing fun stuff while her neutrophils are still up, I hope? haven't had a blood test since Monday.
Next week won't be so great for her as it starts off with Vincristine on Monday at QA, followed by a Lumbar Puncture at PB on Tuesday :-(

3 August 2011

Outing to 'Holly Hill'

Paige donned her shorts, sun hat and shades and we were off to Holly Hill, a woodland forest. She seemed quite pleased to be out and about. She saw the ducks, we strolled around the forest with Mama, Sam, Rachel, Ollie and Isla. She was so thrilled to be out that she never slept a wink, even though it was way past her nap time. It was quite difficult to convince her that she needed to stay in the buggy but eventually she gave up and just clutched her 'Taggy' she didn't even fuss when I reclined her. At the end of the outing Sam said "mummy that was a great adventure, thank you." What a superstar :-).

Her appetite still isn't great but we continue to try new options, she seems to like bagels and of course had some of her finger paints for her mid morning snack! Comments for food ideas welcome!

2 August 2011

Glad to be home

Ok, it's past 11.30pm so safe to write. Paige had a good day today, playing with her toys and giving Sam cuddles and kisses, quite unusual for her. Unfortunately her appetite is not so great with only one decent meal today. She refused lunch and dinner but perked up for the chocolate and ice cream after dinner! Her daddy came home early and put her to bed tonight giving me some much welcomed time off.
Hopefully the rest of her interim maintenance will be uneventful....Tomorrow is our 'outing day' will keep you posted on if it comes to pass :-)

1 August 2011

We're home :-)

After 3 1/2 days at the QA we are at home! This has been our longest stint at the hospital since Paige has been discharged from Piam Brown. Her cultures were all negative for a bacterial infection, so it seems that she had a viral infection, but given her compromised immune system, the protocol must be strictly followed and IV anti-biotics had to be given at the onset. As Dr Jo Walker her consultant for the weekend said "Protocol saves lives." She is a firm believer that once presented with symptoms the protocol must be followed even if the risk is over-medication, it's a much smaller risk than leaving any nasties untreated.
I must say that the staff at the QA went out of their way to make our stay as comfortable as possible which even included giving me a hospital bed rather that a cot bed, so that I could sleep next to Paige with her cot bar down, and therefore creating a sort of 'double bed'. They even swapped rooms so that we could be next to Joseph, and his mum Celine. Celine his mum loves taking photos and there some beautiful shots of the kids together - have a look on Joseph's blog, there's a link on the right hand side of Paige's blog. Her care, which I am pleased to report was also faultless. Our night time nurse was particularly sensitive to Paige's needs and even managed to administer both of her anti-biotocs which included a 1/2 hour infusion and replacement of Paige's drip without waking her up! An absolute miracle - Thank you Fiona
Her bloods are recovering and she is no longer neutropenic (1.4 today) which means that we can continue to do some normal things this week. Although I am a bit nervous since last week Wednesday and Thursday were the first days that we went out and she ended up in the hospital on Thursday night :-(.
Anyway she is thrilled to be home and so am I! We were also give the green light to start her chemotherapy again.