So many things have happened since our last blog!
Week 1 - ending Nov 6th
We celebrated Russell's birthday and the kids really got into it, decorating the table with balloons and confetti the night before and blowing out the candles on his cake, in fact we celebrated three nights in a row! Paige had her dreaded 5 days of Dex which were horrible for her as it really upset her tummy and she had dirrohea for a couple of days. She is so aware of her body though, that she woke up each time and came off the bed to tell me that she wanted to do a poo. Poor heart it becomes more and more difficult to watch her in pain and to have her vocalise how she feels:-(. On a brighter note she has grown 2.5cm in 4 weeks and her hair is just beautiful, she's now 87cm tall.
Week 2 - ending Nov 14th
We celebrated my birthday, with the same enthusiasm as the week before, by then they had perfected the art of decorating and singing the happy birthday song! By Saturday she started complaining about her chest and her line site it was quite red. After a visit to the CAU at the QA hospital she was started on oral anti-biotics. By Monday after clinic her neutrophils were down to 0.3 and we started intravenous anti-biotics once per day at home. She stayed reasonably well and in good spirits. So we celebrated Divali for the second time in England but without mummy this time :-( I even did a presentation at Samuel's school on Divali and made sweets for the entire reception 41 kids! The celebration was a huge success, we managed to feed 15 adults and quite a few kiddies, Paige of course wore her pajamas the entire time, hence no photos of her in Divali wear :-(
Week 3+ - ending today!
By Thursday morning at 1.30am she finally spiked and we took her to
the hospital by then we already knew that she had an external line
infection, hence the continuation of IV anti-biotics. So we were back to
the drill of very high temperatures of 40C that took a long time to go
down despite Calpol. As usual timing was bad as Russell
was due to start an away training course on the Friday morning, so Kathy saved the
day by staying with Sam from Friday evening till Sunday. When given
options for who should look after him, Kathy was Sam's first choice! By Saturday blood cultures were negative but her
line swab was still positive, so we were discharged on Sunday with a
plan to continue anti-biotics and follow up at clinic on Monday this week.
Paige continued with a runny nose and cough when we came home and thankfully our new neighbor, who is an absolute angel volunteered to do the school run, despite her being at home with a very sick tooth - Thank you Naomi! She did the school run for three days till Russell came home on Wednesday night. Paige's neutrophils are still quite low at 0.2, and the weather has been absolutely horrendous with lots of rain and wind. Line swab cultures taken again on Monday were still positive, so now we wait and see what happens. She is reasonably 'well' but still has a runny nose and a cough.
On Wednesday she received her "Little Star" award from Cancer research she is so proud of it
Finally today we noticed that her line site is red again and a bit 'wet'. We'll take her to clinic again tomorrow, hoping that the inability to get rid of this terrible infection, does not translate to her needing to have her central line removed!
I was confirmed at The Holy Rood church today and the kids really enjoyed the service dancing to the hymns, since there was a live band there!
So goodnight to all and please join us in prayer so that her line infection is healed........