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, March 5, 2012

Day + 95

We had a wonderful but busy weekend. Phoebe is back on many drugs and because she no longer has her ng tube to conveniently give her medications, we have to basically hold her down to give them. She cries and we apologize profusely. She is on a steroid, an immuno suppressant, an antiviral, an anti fungal, and a drug to treat thrush, which she has despite the anti fungal drug she is on. And she has a steroid mouth rinse to combat the gvhd that is thought to be on her lips. She is busy and we are exhausted. Her rash is still here but according to the doctors it is less "angry".

The plan right now is to continue to treat her gvhd with steroids for a maximum of 5 days. At which point the rash should have disappeared or be obviously responding to treatment. Following this Phoebe will continue on immunosuppression and we will begin the very slow wean of these drugs. At the end of all of this treatment Phoebe's new cells will once again have free reign, only this time without the risk of GVHD.


Phoebe's bloodwork looked good today. Her platelets and hemoglobin are slowly climbing and are now just a few tiny points from normal. Her white count, despite the steroids is holding steady. All good news. Her chimerism results should be available on Thursday and because we are nearing day 100, today a bone marrow aspiration and lumbar puncture were discussed today. This is to check for Leukemia, the chimerism of the cells, and in Phoebe's case, her intra-cranial pressure. In typical Phoebe fashion, however, all is not simple. The steroids that Phoebe is on can cause increased intra-cranial pressure and because this is something that Phoebe has had problems with in the past, the doctors want a reliable sample. All of this to say, that Phoebe's bone marrow aspiration and lumbar puncture will be delayed 2-3 weeks, so that her body is free of steroids. We are hopeful for good results, but the waiting will be difficult. You would have thought, after all of this, that I would have aquired some patience, but unfortunately, I have not.

In other Phoebe news, she is as always, amazing. She is acting more and more like a full fledged toddler and this evening she successfully pulled all of her big sister's drawing off the fridge and then laughed loud and full at Mae's frustrated reaction. She is opening drawers and pulling out all the contents, pulling up to get a better look at all she can pull apart. It is truly and simply, wonderful. Her big sister Mae is also amazing and getting very excited to make it home. She talks non stop about all of things she will do once we get there. She has it all planned out. She plans to have sleepovers with her cousins, to bring all of her dresses to these sleepovers - in her suitcase of course, to jump on trampolines, go on picnics, camp in the backyard with Phoebe (and Jon and I), sleep all by herself, make new friends, go to school, learn to ride a bike ... her list is long and beautiful and I wish with all of my heart and every part of my being that her and Phoebe's young lives are no longer interrupted and affected by this cancer. That we are able to do all of those wonderful and very simple things that many take for granted.

Everyday I marvel with pure joy at how far Phoebe has come. At all she has done to beat down this disease. And everyday I plead and I wish and I pray for continued good days and a simple future. I don't wish for grandiose or complicated things, just to live life as a family. For my kids to grow up and experience and do all that they so very much deserve to do. Together.

Day + 95 today. And I believe the future, our future, to be bright. Go Phoebe go.

1 comment:

  1. Oh yeah Jenny! It sounds like it is all going great...even with a set back, at least she is healthy!!
    so about another month then in memphis?? How's the weather?? We are back now, may 1stbe for scans...bummed we will miss you. When is your first trip back after leaving??

    So happy everyone is doing well. Mia says to tell mae and "baby" phoebe hello:)