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.

Friday, September 11, 2015

Phoebe had exploratory surgery and a biopsy of her sinuses on Thursday. She is still recovering and her little nose is sore, often bleeding, and congested, but the ENT found no signs of a fungal infection. This is great news and Jon and I breathed out a collective and huge sigh of relief when the doctor came to give us the results. 

Our days at the hospital are long and often exhausting. Yesterday was "granulocyte day", and we were in the medicine room at St.Jude until 4:30 in the morning. Because Phoebe's skin biopsy once again tested positive for fungus, we have gone back to receiving the anti-fungal medicine daily, and as long as my hemoglobin allows it, granulocytes weekly. We are waiting for final pathology results regarding the skin biopsy and until then we are staying the course and hoping this fungal infection remains under control. 

Phoebe is tired and most days she spends her time sleeping or relaxing on the couch. She is still complaining of tummy pain and we still have not been able to figure out a cause. Because of this, she is not eating very much and with all of the trauma to her little nose, we can't put in a feeding tube. She has a lot of healing to do and we just want her well. 

Phoebe will receive another dose of gemtuzomab on Monday and on Friday she will have a bone marrow aspirate. We are hoping and praying that this drug has been successful - there is still no sign of leukemia in Phoebe's blood, so I believe it is helping. 

Please keep our sweet Phoebe in your thoughts and prayers. 

If you are in Ottawa, please attend the childhood cancer awareness event on Parliament Hill tomorrow. There is strength in numbers and we need your support. We are not able to attend this year and wish we could be there. Mae is busy drawing pictures of the Peace Tower in gold to commemorate this great event. So much hard work, love, and dedication goes in to making this event happen each year - to the "Gold on the Hill" team of amazing people - thank-you! 

1 comment:

  1. Hope Phoebe's little nose is getting better and she is feeling better!!