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.

Wednesday, April 22, 2015

Phoebe was admitted to the hospital last night. She had very high fevers and appeared to be having difficultly breathing. When we arrived in our room on the ward, her oxygen saturation levels were as low as 80 and continuing to fall, so she is now on blow by oxygen and bejng monitored by respiratory therapy - in addition to the team of doctors and nurses that also visit often.

Today, she is still having high fevers and we are anxious for some answers. 

The results of the many tests and what we know ...

The CT scan of Phoebe's lungs looks okay. The fungal lesions we have been monitoring since October look the same, if not a tiny bit better. 

The CT scan of Phoebe's belly shows that nothing is there that shouldn't be. 

The CT scan of Phoebe's sinuses shows inflammation that may or may not be the result of a fungal infection. If it is a fungal infection it is there despite the medicine that she has been taking for the past seven months to prevent this. This means it is resistant to this medicine or an entirely new infection. 

The ENT doctor - who may be Phoebe's least favourite person because he had the job of looking up her nose using a flashlight and a very uncomfortable looking metal object - saw some crusting. This could be normal - Phoebe has had a runny nose and a nose bleed recently - or it could be fungus.

Tomorrow morning Phoebe will have an MRI of her brain and sinuses and this closer look will hopefully give us answers.

If it is a fungal infection, it is very serious as Phoebe has no immune system to fight it off. Any kind of infection is serious and life threatening right now. 

The rash is still very much there, still painful and angry, we don't have results from the skin biopsy, but chicken pox has been ruled out. Phoebe hasn't walked a step or stood up since Sunday, and often cries out in pain as even the gentlest touch hurts her. It is heartbreaking. 

The bone marrow results are MRD negative - which is a welcome and bright shining light in this overwhelming sea of darkness. There are very few recovering cells so we will test again when Phoebe has count recovery but we are relieved. So relieved. This one piece of good news is fuel and strength and what we needed to hear today. 

Phoebe is obviously still not ready for transplant, but even if she were, the transplant trial is still on hold and not expected to open for 2 months. 

The doctors and nurses are taking excellent care of Phoebe and we are so grateful for all of them. 

We hope for more news and answers tomorrow, a plan to move forward that will help Phoebe fully recover. 

Despite all of this, Phoebe continues to amaze. As I write this she is listening to a cd that the child life and music therapists made for her today - complete with her favourite Weezer - she is happily tapping her feet and singing along. 

Coolest kid ever. 

Thank-you all for reading and sharing and keeping Phoebe close to your heart. I can't adequately express what this love, prayers, and support means to us. 

The road is long, but one step at a time, we will get there. 

Go Phoebe go ...

1 comment:

  1. One step at a time - for sure!!
    Go Phoebe Go
    Praying as always for your sweet girl and her big sis and her mommy and daddy...