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.


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