One Year with my MPN
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by Chris on 7 September, 2018


Time for a much overdue update. Today is a special day of sorts., as today marks my one year anniversary of my diagnosis. Happy Birthday to my MPN, Happy Birthday screw you, just kidding, well kind of. Continue reading →

06-30-17 June updates & Cord Blood Storage
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by Chris on 1 July, 2018


Updates for June how I feel with PV, the new baby and CBR registry. Continue reading →

5-24-18 Updates and Ongoings
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by Chris on 27 May, 2018


Thursday 5-24-18 was my normal monthly checkup with my oncologist. This visit was both filled with exciting news and some slightly upsetting news. Continue reading →

5-5-18 Powering Through
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by Chris on 5 May, 2018


I have PV and don't look sick but I fight to do everything I do. Continue reading →

5-2-18 Hay season starts.
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by Chris on 2 May, 2018


The start of the hay season with PV. Continue reading →

NCCN MPN Patient Webinar.

by Administrator on 28 April, 2018


NCCN is hosting two different MPN Patient webinars at the beginning of may. Dont miss it. Continue reading →

NCCN Guidelines for MPN Patients.
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by Administrator on 15 April, 2018


Found this NCCN Guideline for MPNs today. I think it is a pretty good resource. Continue reading →

SurviveAll Bands & Bracelets.
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by Administrator on 14 April, 2018


SurviveAll Bands is the brain child of Shaylee, my 12 year old daughter. While she had some help with the name the idea is all hers. She came to me asking if she could start making bracelets to raise awareness for cancer after I was diagnosed with a rare form of blood cancer. Continue reading →

4-14-18: Jakafi is working.
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by Chris on 14 April, 2018


I said that I would make an update after my last doctor visit but time has not allowed. Here it is a little bit later but if you have been following along recently I was prescribed Jakafi: Ruxolitnib. This last appointment was the first blood tests since being prescribed. Continue reading →

Voices of MPN Live event reflection
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by Chris on 28 March, 2018


My reflection and take on the Voices of MPN live event in Charlotte, NC Continue reading →

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