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, June 6, 2012

We love St. Jude

It is no secret that we love St. Jude.  That the very thought of the hospital and all that they are doing to help children like Phoebe brings tears to my eyes and goosebumps to my skin.  For us and many other parents, for whom hope seemed lost, St. Jude became a beacon of light in a sea of darkness. It is a place of miracles and of hope.  When we arrived here, Phoebe's future was very uncertain - the treatment she was to receive was "experimental" and was considered to be our last resort and we met many other families who were walking similar roads.  We shared strength, hope, and joy with these families.  And for a building where so many children and their families are fighting terrible battles everyday, where life is often measured in days and weeks, it is surprisingly so full of joy. 

The children who call St. Jude home are celebrated.  They are treated as they should be - like heroes, and despite what may be going on inside their young bodies, their lives are not overlooked.  There are graduations, proms, concerts, festivals, carnivals, treats, everything possible to help them to get through.  It is truly a magical place and I could probably go on for days and days about all that they have done for us and for Phoebe.  About all of the work that they are doing to find cures for children's cancers. 

And so when we were asked if we would like to share Phoebe's story as part of St. Jude's fundraising efforts, we said yes.  Of course.  We will do whatever we can to raise awareness and ultimately to give back to the hospital that saved our daughter's life.

We shared Phoebe's story one day with a member of St. Jude's fundraising organization - ALSAC .  We talked about all that we had been through to get to St. Jude - about the many conversations that we had with doctors who believed that Phoebe could not be cured.  Who worried that we were doing more harm than good in continuing to treat her cancer.  All of the emotions that were still so raw and very close to the surface came flooding back.  And there were tears.  But, as time went on and the story was retold, and we walked the halls of St. Jude, I realized that all of that doesn't matter.  What matters is that we made it because so many others did not.  We are lucky - in all of our unluckiness and not a day goes by that I am not thankful.  My hope is that in sharing Phoebe's story, we are sharing hope and helping to fuel the research and science that made our miracle possible. 

And yes, we will share Phoebe's story until the day that we are no longer on this earth.  And until that day, I will continue to be incredibly grateful to St. Jude.  To Danny Thomas, the founder of St. Jude who had a dream and made it happen, to the brilliant doctors who believe that anything is possible and share so greatly in the hope that many families arrive clinging to with all that they have, and to the other families that we met who embraced us, supported us and helped us through our everyday.  We love St. Jude.

One of the fundraising "events" that our family was a part of was the filming of a public service announcement for St. Jude.  Jon, who to those who know him, does not love the limelight and is not comfortable surrounded by attention and cameras - faced his fears and the thought of being on national television to film this wonderful PSA.  It is a tiny glimpse into the lives of the children at St. Jude and it brings to light the very importance of moments.

You can watch the 60 second public service announcement here :

And finally, in Phoebe news - she continues to have 100% donor cells and we are looking forward to the removal of central line #9 next week.  She will have another visit to St. Jude at the end of the month for a chimerism test and follow up visit with her doctors.  

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