How many more can a middle aged, single mother, distressed damsel take?
We don't want to do this anymore. Sleepless nights with the unknown outcome. Too many What if's, constantly racing through my mind and reliving the "I don't know why" and "she is a mystery" scenarios.
After another tough week waiting for the bone marrow biopsy result I am happy to announce that my little Allegra is doing extremely well and is microscopically still in Remission.
Allegra and two of her favourite people from RCH
Allegra had her bone marrow biopsy Thursday fortnight ago. While we waited to go into surgery, Allegra had her two favourite people from RCH entertaining and distracting her, Beth ( Music Therapist) and Olivia (Play Therapist). It was hard and sad carrying her away from this pleasure into theatre. The fear and uncertainty of the big stainless steel bright room with many people looking at Allegra bought familiar memories instantly back to her. She cried tears and said no, no mummy even finishing with a pleeease. I whispered our mantra in her ear and fortunately she was asleep quickly and then, we waited and waited. Waiting is the hardest and an hour goes for hours. Mum and I talked nervously about nothing really. I am sure I have mentioned this before, that it does not get any easier. It still breaks my heart laying my baby down once she is asleep, turning my back and walking out leaving her behind in the hands of others.
We were back in on Monday for the long awaited results from the biopsy which was "microscopically remission", Dr Marty announced. With Allegra's type of Leukaemia they can not tell us whether all cancer cells are gone. I prepared myself (if that's what you can call it) and asked Erin (one of my favourite people at RCH) to be there for the result. Erin is a clinical psychologist working in the Cancer Centre at RCH and she has been a comfort and blessing to and for Allegra and myself.
Phew with the result. But then, Allegra needed blood tests to check all her counts and Dr Marty was going to call me that afternoon when they came in. I was shattered and very concerned to hear the decrease in her blood and platelet counts. This is not good and it can also be a sign of relapse. Dr Marty says we will repeat them on Friday.
2 weeks ago
White cells 5.9
White cells 9.4
Haemoglobin 105 - 140
Platelets 150 - 400
White cells 5.5 - 15.5
Neutrophils. 1 - 5
So during the weeks we have kept ourselves busy and preoccupied while we waited for Friday to arrive. Allegra has been just gorgeous.
"Faster and high in the sky" with Ma Mar
We have managed to reduce some of her pain and anti-nausea medicines and begin weening her slowly from the opioids. AND Allegra's hair, eyelashes and eyebrows are beginning to grow back. Very very cute. We will have to go shopping for hair clips soon and I can't wait for that time.
Feeding the ducks (and herself)
Early morning power walk
We have fed ducks, been shopping for more books, walked the streets in the wee hours of the brisk mornings, conquered playgrounds and had a great time doing it all. Allegra has been to Music Therapy with Bec at Challenge House. So far she has had the class to herself, already having privates. I love our simple but complexed life (make sense?) and I just love being at home with my little Allegra enjoying our togetherness.
Music Therapy at Challenge House
Back into hospital on Friday for the repeated blood tests and we waited there for the results. Again her blood and platelets are low but had come up a little. Dr Marty says we need to repeat them again on Monday. So we wait again.
White cells 8.9
Back into hospital on Monday for more repeated blood tests. Arghhhhhh we are sick of that place but much prefer being home for a few days before we have to go back each time for day visits.
Day Oncology with Dr Marty
So we repeated the bloods again and again they were too low. Dr Marty can not give me a reason as to why and he is meeting with the Haemotologist to discuss my little Allegra. Another blow was that her liver function is far too high, this is also concerning and another mystery to the doctors. So the standard response, "come back and we will repeat the blood tests next Monday".
Patience Jacqui- I was told this very early on in our ordeal at the hospital. I think I have learnt a lot of patience and thought i had mastered it but how many times can I be tested on this. My patience is wearing very thin and my body is one tense mass.
White cells 8.4
Thank you to everyone for your continued thoughts, wishes, crossed fingers etc and messages during these tough weeks.