26 February 2013

Life's a Yo Yo - didn't you know?

The life of a family fighting cancer has so many ups and downs we are a virtual Yo Yo!

Paige had her first haircut at a beauty salon.

She also celebrated her first Valentines day with us as a family in our house rather than at the hospital, which included making special cards for everyone and pressies! We also spent a lovely weekend in Bath with Margaret and Asha, two of my classmates from high school, along their respective families that weekend. Samuel was quite amused that I was seeing my 'school friends'. Paige was her usual cheery self despite having been given a low neutrophils count of 0.4 on Monday Feb 11th. We knew that she had recovered though, a good indication was her ability to give up her day sleeps three days in a row! Of course Samuel was at home for half term so that certainly helped with her staying awake. That was a great 'UP' for us all being able to have a weekend that was away from home, hospital free and with friends. Quite a treat for me particularly.

Then we returned home on Sunday and she spiked a temp of 38C on Wednesday morning at 7.00am. By this time her neutrophils was back up to 1.6. So they observed her for many hours at the hospital, inserted a cannula, gave her some IV anti-biotics and sent her home to be managed. She now had neutrophils of 6! So for the first time since she has started treatment her bone marrow was working really hard to fight her infection. By midnight she spiked again to 38.6C and a quick call to the hospital confirmed that we could administer Calpol as needed and take her in to the hospital, if we were at all worried. Managing her at home was quite scary, without the safety net of being in the hospital. Of course being in the hospital so many times previously I was well trained and prepared. So of course kept a log and did 4 hourly observations, with hourly temp checks if she had a temp! Her fever eventually broke on Thursday late afternoon and she's been on the road to recovery since :-).

Then yesterday she had her 4 weekly cycle of chemo. After two tries her cannula insertion was unsuccessful and we stopped to try and warm her hands in a bowl of warm water. So here we are at the clinic with two oncology consultants, (their protocol is that if there are 2 unsuccessful attempts, another consultant has to try) a specialist nurse and a bowl full of water filled with toy frogs. Needless to say we all had quite a bit of fun and got our hands wet except Paige of course who refused to comply. The Oncology Pediatric Consultants at QA are certainly a special breed and they do try especially hard to make Paige's journey as stress free as possible - Kudos to them! The third try was the charm but she was understandably distraught by then. But not too distraught to hear me promise to get her a pressie if she remained still. So three hours later we were on our way to the toy store. Her 'babies' now have a lovely bath and wooden bunk bed to sleep in!

Neutrophils are still holding at 1.2 based on yesterday's results so that she did playgroup and a quick visit to the Nursery today. She oficially starts on Monday 11th! Quite exciting for her and scary for me.

Good news - end of treatment has been confirmed for July 12th, with her last lumbar puncture and bone marrow biopsy on June 4th.

Her next LP is due on March 12th.

Not so great news one of the kids that we've met on our journey has been diagnosed with another unrelated type of cancer 9 months after being given the all clear for his first type, he shares a birthday with Paige and will be just 4 years old this year. His name is Clayton and he is undergoing surgery today to remove his tumor after unsuccessful rounds of Chemo, please pray for him and his family and keep them in your thoughts. This injustice to him is almost too much to bear and is painful just writing about it............

1 comment:

  1. Sending loving thoughts and prayer to you all and to Clayton and his family. So so good to spend time with you all. You are a star Lisa. May you be blessed always. Hugs for Paige, Sam and Russ xx