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.

Tuesday, August 12, 2014

We believe ...

We officially and finally qualify for the study and tomorrow is the big day. The day we have been trying to get to for the past 10 weeks. It is amazing to think that it has been that long since Phoebe relapsed and Jon and I still watch her and wonder how any of this can be possible. I know I have said it before, but Phoebe is not a sick girl. I take this as a good sign and I am happy that she is starting this clinical trial tomorrow in what at least from the outside appears to be excellent health. 

Phoebe's bone marrow results were "patchy", meaning that some spots had more disease than others. This is not common with leukemia but the doctors did find a good spot in her left hip with 60% disease. More than enough to qualify for the study and so tomorrow Phoebe will be hooked up to this targeted medicine and she will continue to be hooked up for the next 28 days. 24 hours a day. The medicine will run through her central line while she sleeps and while she is awake but if all goes well we will be able to receive all of this treatment out patient. We have been trying to prepare Phoebe for this and she has been "practicing" carrying around a little back pack. She loves her back pack and often carries it around with her toys, so hopefully she will get used to having it hold her medicine. I think it will take some adjustments and getting used to. It is heartbreaking, just how many things Phoebe has to endure and get used to. Instead of picking out a backpack to hold what we hope is lifesaving medicine, we should be back to school shopping for Phoebe's first school bag and planning her first day of school. Life just isn't fair sometimes. 

We are grateful to have this chance. With each relapse, we worry and fear that we have tried all that there is to try. With each relapse in the past, we wished for an option like this. A targeted drug that is actually meant for MLL+ leukemia. Phoebe will be the second child to receive this drug. Scary yes, but no scarier than chemotherapy and the multitude of side effects that it brings. We are excited to actually give Phoebe a medicine that is designed with her in mind. A medicine that won't make her terribly sick before it makes her well. It only takes one and perhaps this is the one medicine that will make the difference for Phoebe and children like her. Perhaps this is the breakthrough that the infant leukemia world so desperately needs. We need a breakthrough. 

We believe. 

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