Just wanted to send a shout out to my friend Miriam who, at about this time last year, gave us a gift that is beyond generous and transformed our journey through leukemia: she connected us with a doctor at CHOP (Children’s Hospital of Philadelphia) who is an expert in Sam’s mutation (remember: it’s super rare in teens)

When Sam’s NGS number jumped from 27 to 4000 in December 2022, we knew we needed some help. And because of Miriam’s connection from August we knew who to go to.

Do we go to CAR-T? Do we go to stem cell transplant?  The CHOP doctor literally got an email from me on a Thursday in December and on Friday afternoon she was on the phone talking about the options with our oncologist. This decision was a huge turning point in our journey. Without my friend Miriam, and her son Holden, we wouldn’t have had this connection.

I met MIriam at college and appreciated her free spirit, open mindedness, and intelligence. Little did I know the impact she would have on me as we moved through life.

Fast forward to October 2010: her younger son (yes, she too is a mom of 2 boys!) was diagnosed with Wilm’s Tumor (kidney cancer).  He was  3.5 years old. I followed his Caring Bridge site (and subsequently knew where to go when Sam got sick — getting information out to loved one in an efficient way is very important during times of health crisis — sending individual texts is just *not* the way to go — so I knew about CB and was able to set up Sam’s site :).

On December 14, 2013, Holden relapsed with tumors in his lungs and she knew that it was only a matter of time.

He lived for 2548 days, 6 years, 11 months, and 22 incredible, joy filled, happy days.  He embraced life. He lived large. He died 9 days shy of his 7th birthday: May 22, 2014..  I never had the chance to meet Holden sadly, but his life impacted mine in such a profound way. Thank you Holden.  We should all channel our inner Holdens and embrace life like he did. 

In Holden’s honor and memory, Miriam set up the Invictus Fund at St. Baldrick’s, which is a foundation dedicated solely to childhood cancer. We have been annual donors since 2014. 

Thank you Miriam. You are the strongest mom I know. 

#FUWilm’sTumor

#FULeukemia

#LFGStemCells

#GoGoldforChildhoodCancer

#TeamSamStrong