Phoebe is struggling with many things right now. She started the new protocol and was fine until Thursday when it looked like she had a reaction to a blood transfusion. We were admitted to the hospital and the next morning Phoebe woke up with a nose bleed - it just wouldn't stop. She was losing a lot of blood so the ENT doctor packed her nostrils to stop the bleeding. This worked but traumatized poor Phoebe. While all this was happening her lips started bleeding and she developed some blisters and sores that have yet to go away. Each morning since she has woken with a mouth full of blood and painful swollen lips black with dried blood. It is as awful as it seems. It is all just too much.

We were discharged late Saturday and went back to the Target House. Phoebe had a difficult night and so we brought her to the hospital last night because we were worried about her breathing and the bleeding. She was listless and just looked to be working too hard to breath. Phoebe actually asked to go to the hospital which was a first and just made us worry more. Her oxygen saturation was low and so we were sent home with instructions to use supplemental oxygen. Many questions and not many answers. 

Today we are back in the clinic for labs and hoping to get some answers and relief for Phoebe. They are running tests for viruses, but the common ones have come back negative so far. We are waiting to see the infectious disease doctors. And because Phoebe isn't eating, she is being started on IV nutrition - a feeding tube isn't an option with everything going on with her mouth and nose. She is not herself although when her favourite song comes on the radio she asks us to turn it up so she can sing along, her lips make singing difficult but she still tries. Beautiful Phoebe Rose. 

Please keep Phoebe in your thoughts and prayers. All of this is on top of the many other issues we deal with on a daily basis and Phoebe needs a break. It is so hard to see her struggle with so much every day.  

Thank-you all for loving Phoebe and helping our family through this. We are so grateful for the help and support we have received. 

This week at Mostly Danish Furniture on Wellington St in Ottawa, 10% of all sales will go to Phoebe. This week also marks 5 years since Phoebe was originally diagnosed. 5 long years of ups and downs made easier with the support from friends, family and our community. Thank-you.