On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Monday, October 19, 2015

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. 





6 comments:

  1. Sweet Phoebe, we are praying for you and sending a gazillion hugs, hope you can feel all the love and prayers coming your way.

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  2. You don't know me, but I pray for Phoebe every day. I'm so sorry to hear that she is struggling. She does indeed deserve a break, and that is specifically what I am praying for: something to go well, some unalloyed good to come along.

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  3. I'm so sorry your sweet girl has to fight so hard. She is in my thoughts often, and I am sending you strength.

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  4. I check on Phoebe every week. I am in awe of what she endures and how she continues with light and joy nonetheless. I am close friends with another family who is dealing with pediatric cancer. I see how isolating an experience it can be. I don't pretend to understand what you are going through but I just wanted you to know that there is one more person - even though I don't know you all - thinking of you, sending love and light to Phoebe, and pulling for her. Go Phoebe go.

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  5. Thinking of you all the time, sending everyone love.

    Bronwyn

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  6. Just discovered your blog, on this, the anniversary of your diagnosis. (We are also a cancer family, with a couple of mutual friends.) Much in prayer for Phoebe today.

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