28 March 2013

3 More to go

Not that we're counting but we now have three more days of the demon dex (steroid) and three more cycles of chemo to go!

Oh it's been a roller coaster couple of days! last week blood sample no1 collected on Monday, clotted so no results. Sample no 2 got lost at the hospital and was eventually found thanks to detective Wilf on Wednesday morning. Poor man he hadn't even had a chance to take his coat or hat off when I called at 8.15am last Wednesday. Paige was due a swimming lesson at 8.50am so I was quite anxious to get a blood result. We were told the night before by the hospital that the lab never received a sample. I knew of course that she was well, didn't have a cough or cold and of course no central line and could go swimming but preferred to have Wilf's go ahead in the absence of blood results. Anyway all's well with her count, the sample was found stuck in the 'pod' and the results were pretty good with neutrophils of 1.8, despite being on 100% oral chemo for two weeks - Go Paige!

On Friday, she had her lumbar puncture, luckily she was first on the list. The anesthetists in the room were particularly pleasant and very accommodating :-) Of course madame Paige was awake within 10 minutes of being out of the treatment room and screaming. Poor Sister Karen came in and said "Lisa, she's awake and screaming!". They were all quite surprised that she could be so feisty and loud so soon after coming out. Katherine one of the nurses also reminded me that they still think of her as the 10 month old baby not the nearly 3 year old girl who speaks..... Our meeting with Dr Morgan afterwards gave us no additional assurances because she does not have any new information but felt relatively assured that the treatment of Paige's CNS (central nervous system) disease without the use of radiation did not place her at any additional disadvantages. She also confirmed that any relapse within the first 6 months would not be good.
In terms of follow up visits after end of treatment, she confirmed that we would do monthly blood tests and clinic for the first 6 months. She felt that would keep me sane :-). Thereafter she'll reassess.

By Saturday we were rearing to go despite the cold and we ventured out to Holly Hill for an Easter Egg hunt. Paige of course stayed in the buggy because the forest was a complete bog! The kids seemed to have fun despite the mud and Paige being confined to the buggy. Needless to say we were all quite happy to be back in the warm house. We even managed to attend Palm Sunday at Titchfiled church, a first for Samuel, Paige and I. The kids were quite tickled to see the real little donkey, Samuel of course used his palm as a sword......

Monday clinic with vincristine was quite traumatic for us all, Paige asked for Samuel to be in the room so that he could quote 'do silly things to make me laugh'. Of course nothing worked and she was in tears. It's good that she doesn't hold a grudge though because she gave Wilf a high five, kiss and cuddle before leaving. Wilf of course was beaming from ear to ear. Unfortunately Paige now experiences some of the side effects of the chemo vincristine, namely terrible jaw pain. She wasn't able to eat dinner and kept eating ice lollies to soothe her mouth. She's so clever....

It's heartbreaking to think that after all that she has been through in the last 23 months that she still may not be cured. It's even more difficult to accept that we have absolutely no control over what her outcome will be. She is such an intelligent, affectionate, stubborn, feisty little girl, that the thought of her not being able to reach her full potential in life is unbearable. Whilst I don't see these as negative thoughts, they have to be considered....The anxiety of her end of treatment is certainly bringing alot of suppressed emotions and feelings to the fore.


18 March 2013

Loves Nursery

Paige's Lumbar Puncture has been postponed to this Friday March 22nd because the 'list' was too long for last week Tuesday. This I thought was a blessing in disguise because it meant that Paige could swim last Wednesday and more importantly, being there on a Friday reduces the probability of having to deal with the unpleasant anesthetist.

Paige has now had two swimming lessons and lunch in the main dining hall. She absolutely loves it at the West Hill Park Nursery! Today she participated in the Easter Bonnet parade, proudly wearing her bonnet made with love by Mummy, Samuel and finishing touches by Paige. I am such an emotional mess that I cried at the school's main assembly while she was at school, sitting so nicely with the other nursery kids. After the parade I left and she said "bye mummy see you later". She is so confident and eager to learn and be with kids her own age. It must also be quite refreshing for her to be with other healthy kids as well. Credit is also due to her key carer Becca for making her so comfortable and welcome, poor heart she had to change Paige's nappy and it occurred to me that it was the first time that someone other than Russell or I had done that.

Of course we had to make bonnets for both Samuel and Paige.

School closes this week for 3 1/2 weeks so if I survive I will update the blog weekly. Her next round of Chemo and steroids is due next week Monday. Never thought that I would say this but I am looking forward to her eating again, her weight is back down to 12.1kgs and she seems to have lost her appetite. Results from last week still showed a rather low level for her hemoglobin, we haven't had much success with her taking her iron supplements.

Blood results for today are now delayed because her sample clotted, not a surprise really given today's process. Hopefully we'll have better luck tomorrow because her last swimming lesson for the term is this Wednesday.

So the countdown to July continues and we're looking forward to an uneventful Easter holidays.


6 March 2013

First Day of Nursery and Swimming

We made it through yet another week of the dreaded dexamethazone; Just 4 more to go and definitely counting! Every month we have new issues as she continues to mature and become more aware of everything around her. On Wednesday night just before she fell asleep she said "mummy you forgot to give me my medicine", she was correct so I gave her the chemo and she went to sleep. On Thursday she flat out refused to take her chemo and said "I've had enough!", she completely broke my heart. I had to go against my better judgment and force her to have it. In the end we were both traumatized and I apologized. She said "it's ok mummy, don't do it again, ok!". On a brighter note, she awarded me with two green stones for being "good' last week. Once when I made her laugh and another time for sitting quietly and watching TV :-)....hmmm the student becomes the master.....

Anyways, medical update, after three weeks of having 50% of her oral chemo dosage Paige's neutrophils have held and she is still at 1.4 based on this Monday's blood results. So her dosage has now been upped to 100% asap. Tests have also now confirmed that her iron levels are quite low hence her consistent low hemoglobin levels 8.1-8.6 over the last couple of months. She has now started an iron supplement. You can't get anything past her so it is well hidden in her grape juice.

Now onto fun things:

Paige is now discovering the joys of dressing up and her big brother is her hero so she likes being Fireman Sam, as well as a fairy princess (pics to follow). Samuel of course is very involved in superhero week and is currently Batman.

Paige's dad is not just a pretty face and here he is making sausages for his beautiful daughter to reduce the amounts of preservatives that enter her body... and of course any threat of horse meat :-)

I was so very proud of her today, she packed her new goggles, her named towel and her swimming costume into her new personalised swimming bag and we were off to school. Yes I do like having the right kit :-). When we arrived at 8.20am, at the nursery Gigi the Head of Nursery reported that one of the kids had a spot, so we followed her directly to the swimming pool. Paige got changed, as did I. We got to the pool and in she jumped without so much as a glance back at me! She was so happy and at home in the pool, she lasted the full lesson without being tired and smiling all the way through! So much for me be worried that she would need me in the pool. Afterwards we walked back to the nursery and of course madame Paige refused to hold my hand, instead she held the hand of her 'new friend' another child at the nursery. She sat nicely and has a snack with the kids, they played outside, then came back inside. By now it's 11.30am and I was exhausted but Paige refused to come home. In the end I had to bodily remove her and she was not impressed. This was just a settling in visit. She will have another settling visit on Monday with lunch, then officially start on Wednesday next week.

She just looks so grown up now!

Next week Tuesday she has her penultimate LP. In other news Clayton is recovering nicely after his marathon 15 hour surgery last week Thursday. He is a true hero.