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, August 21, 2015

The tiny boss lady ...

Phoebe has been out of the hospital since her birthday. We did wake up in the hospital on her big day, but thankfully got out soon after to enjoy a very small celebration at home. Phoebe's only birthday requests were a "wiggle cake" - (she calls minions, wiggles) and a ride on the horse and carriage through downtown Memphis.

Phoebe loved every minute of the horse and carriage ride and Jon and I pulled together the cake at the last minute. It looked nothing like the shiny picture we followed on the internet, but Phoebe loved it. Or she loved looking at it and blowing out the candles. She would rather eat sushi and salty things. 

Shortly after the big birthday, Phoebe had a repeat bone marrow aspiration to check on the level of leukemia, but also to see if she qualifies for a drug that targets a specific protein often found on leukemia cells. The good news is that Phoebe can receive this drug. It will target the Myleoid leukemia that she has and because these cells now make up all but 7% of Phoebe's leukemia, we are hopeful that it could actually work. The bad news is that Phoebe's bone marrow is still very full of leukemia. How it is contained here and not affecting her life, is a mystery, but one we are very thankful for. 

This new (to Phoebe) drug, called gemtuzomab, is no longer on the market, so our doctor had to request it directly from the drug company and then have it approved by the hospital's review board. She is hopeful that Phoebe can receive it on Friday and we are so thankful for the team of people who take part in Phoebe's care. 

Phoebe's latest bone marrow chimerism shows that just 9% of her cells are donor cells and the remaining 91% are leukemia. This is slightly higher than on the last test. The leukemia is now predominantly AML, with some ALL still present. Phoebe's blood and spinal fluid remain clear of leukemia and although the bone marrow results are terrible and devastating, Phoebe is not a sick little girl. She is eating, playing, laughing, singing and telling us exactly how she feels. She is often the last person to go to sleep and the first to wake up in the morning and she brings the joy and spunk to our days. She has earned the title of "tiny boss lady" because as joyful as she is, she is also very bossy and determined. At least once a day, I hear Mae tell Phoebe - "you are not the boss of me". Phoebe has so little control over her days that she tries her best to control what she can, including Mae ... and Jon and I too. 

We are tired and weary, but hopeful. Phoebe has come so far and every day she proves that anything is possible. I was speaking to one of Phoebe's doctors about the fungal infection recently and I commented that it is hard to know how Phoebe's skin, that was once black with fungal lesions, will look when completely healed because I just can't find any information or images - to this she said, well that is because Phoebe is one of the only survivors. This. It is truly amazing how well Phoebe is doing considering all that has happened and so, we keep on. The bravest tiny boss, two exhausted parents, and the glue that is Mae that holds us up and keeps us all together.

We believe. 

Go Phoebe go ...

1 comment:

  1. Praying that this new drug will work for the "tiny boss lady" and hoping you all can keep up with the boss lady.

    Continue to Go Phoebe Go!