March 20th, 2019
What a beautiful today! Today the genetics councilor at the Cleveland clinic told us that Emma does not carry the rb1 gene and isn’t at risk of the other cancers associated with retinoblastoma!!! This means that if anything changes with the pineal gland, it’s completely unrelated to the retinoblastoma! This also means emma’s children have 1% or less chance of having the same cancer! Woohoo! They classified her as a sporadic case.
Secondly, we cannot thank all of you enough. We don’t know how to thank you! From the bottom of our hearts, all of the thoughts, prayers, positive vibes, generosity, and support is incredible. But please continue the positive energy. In a couple months we go back out for more evaluation of the pineal gland (and another eye exam/MRI under anesthesia). All of the love and support we have received has made everything so much easier in this situation. We are beyond blessed to have a wonderful family, friends, and community surrounding us! THANK YOU. THANK YOU. THANK YOU!!! I wish I could figure out a way to give each and everyone of you a hug and personally thank you! Please except this as our thank you and virtual hug! It is amazing to me that ppl who don’t know emma or us, have reached out and helped us more than words can describe. There truly are wonderful people in this world, overriding all the negativity!! In the last 4 months I have never cried as much as I have over every single emotion: scared, grateful, nervous, worried, loved more than imaginable, more often then not- I cried over the overwhelming support and love we have received from everyone!! Complete strangers becoming “friends” because they saw our story and have had similar experiences to guide us, strangers who want to help, friends providing endless understanding, and most importantly family for helping care for our house, pets, and most importantly emma daily!
They say out of something bad, something good always comes! Endless love is the greatest thing we have received. We love each and everyone of you. Thank you!
I will post updates after the next exam- hopefully continue to hear good news!!
Btw Incase you are wondering: emma has been doing great with her new prothestic eye! We have a check up Friday, but I don’t see any issues with it and she has adapted very well to something big and new in her eye!! We are so lucky to have such a brave, strong, and understanding little girl! She has let everything that has needed to happen at medical appts go off without a hitch! She lets me do what I need to do with zero complaints and she tolerates it all so well, making everything so easy on our end! Not sure how we got so lucky but we are beyond blessed with this little life we get to raise and I am very proud to call her my daughter!!!
WE LOVE ALL OF YOU BEYOND WHAT WORDS CAN EXPRESS!!