Sunday, September 1, 2013

MEET EZRA: QUICK UPDATE


Since sharing the JMML news, we have been back up to Doernbecher's to meet our oncologist and talk more about Ezra's diagnosis and treatment plan. Given the complex nature of JMML, our path forward is a little uncertain at this time. I keep wanting to write a detailed update for you all to explain some things, but there is so much to say, and it's so complicated, it's really too hard to put into words right now. Hopefully we will have some more direction by the end of the week and I can write an update then. In the meantime we are still at home and Ezra is relatively "healthy," but his immune system is of course compromised and we have to be extremely cautious (translation: no outings to public places except for doctor's visits).

Thank you, thank you for the continued prayers, love, and support!

PS - A couple of our friends from church have lovingly set up a Caring Bridge site and support planner for us which you can visit here: http://www.caringbridge.org/visit/ezraparker.

PPS - September is National Childhood Cancer Awareness Month. Here are some ways you can support childhood cancer: http://mindithemagnificent.com/what-you-can-do-to-support-childhood-cancer/

Shoot, one more thing! I shared this on Facebook the other day, but in case you didn't see it:

Many of you have expressed your desire and willingness to donate your bone marrow for Ezra. Words cannot express our appreciation for this amazing, selfless act of kindness. Unfortunately, it is highly unlikely you will be a match for Ezra...in fact, the only person that they are willing to test is Judah (there is a 1 in 4 chance that he will be a match). What you can do is join the registry anyway (for free)...it is a huge commitment, but it could potentially save the life of another precious child. Please visit here to learn more: Be the Match - National Marrow Donor Program
 

2 comments:

Heather said...

Greetings Elisabeth! I was hoping you would be willing to answer a quick question I have about your blog! My name is Heather and my email is Lifesabanquet1(at)gmail.com

Mindi Finch said...

Oh, Mama. From one JMML mom to another, thank you so much for sharing my childhood cancer action list.

Keeping you close. Please do not hesitate to drop me a line. We are just over four years out from our son's transplant for JMML. I'm here. mindithemagnificent@gmail.com

Love, love, love......