Phoebe spiked a fever yesterday and is now in patient at St.Jude. Blood cultures were taken and show a gram positive infection in her blood. It looks like the same infection she had last month.
Although she wasn't herself yesterday, she was sitting up, watching movies and asking her daddy to make rainbow loom bracelets for her. He was making them to order and she would happily show the nurses her latest one. She went to sleep with an arm of rainbow loom and woke up in extreme pain.
Phoebe woke up in the middle of the night screaming and crying out in pain. She was holding her stomach and asking for medicine to help. Despite all that she has been through, I have never seen her scream in pain like she did last night and it was so difficult to stand by and know that there was nothing I could do to take it away. I was helpless. The pain escalated and Phoebe began crying to the nurse to give her pain medication - something else she has never done. Just writing this causes me to break down - tears filling my eyes. It shouldn't have to be this hard. Phoebe was given morphine for her pain and even after that she was still uncomfortable - grunting and moaning as she slept.
They did an X-ray in the middle of the night, and didn't find anything alarming and today an ultrasound also showed no inflammation.
The skin biopsy is positive for fungus. What type of fungus, we don't know, but it looks to be in the same family as the fusarium and given Phoebe's history, all of the doctors are concerned. It appears to be more controlled than when it first appeared in April - but that it is still threatening Phoebe's life is just devastating.
Each time the doctors walk in the room I brace myself. I worry all the time. I worry about what they will say, what else have they found, what else does Phoebe have to overcome? Will tell us there is nothing else they can do? That is my fear and each day they promise to do all that they can I breathe a sigh of relief.
Right now Phoebe is not well and we need all the love, prayers and good and positive thoughts you can send. She is in pain and needing oxygen, she is still having fevers, and her body is full of infections that she doesn't have an immune system to fight off.
I think of all Phoebe has overcome and it both settles my weary soul and breaks my heart. I think that she has come so far - she is a miracle and so strong and she will continue to push on and fight, but then I am stopped by the pure sadness and heartache for all my sweet Phoebe has had to endure. None of this is okay and we need to do better. This is what pennies from a billion dollar research budget gives us.
Please keep telling Phoebe's story. Help us raise awareness so we can change this story. No one should have to go through even one of Phoebe's hard days yet she lives through so many, thousands of miles from home.
To date, only 2 federal candidates have confirmed they will attend the Childhood Cancer Awareness Event on Parliament Hill. This is two more than last year and the year before and Elizabeth May is sending a representative on her behalf, so I guess we should be happy. I'm not. For the past three years, this event has been completely ignored by the other federal leaders despite many emails, invitations, and tweets. Invitations, frequent requests to send a representative, or to simply wear a gold ribbon are unanswered. We have not even been granted a reply and I often wonder what it would take to get their attention - I wonder how they would feel and what they would do if they sat where I do right now.
Among so many things, we need a cure. We also need treatments that don't "slash, burn, and poison" our children. Canada, we need more than 3%.