Saturday, April 30, 2016

Fanconi Anemia Awareness Day-May 1 2016

This is a picture of our daughter Macy. She's 5, and wants to be a Dentist when she grows up. Macy has a very rare genetic disease called Fanconi Anemia (FA). It's a very complex disease, but in a nutshell her body cannot repair DNA damage. This means every day things she's exposed to (like radiation from the sun, chemicals in clothes/the air, second hand smoke from a passerby, and even the by-products of natural cell turnover in her own body) are killing her. 
Kids with FA usually go into bone marrow failure by the time they reach 10 years old, thus needing a bone marrow transplant. This is NOT a cure. A lot of children with FA do not reach adulthood. Those who survive transplant often get cancer in their teens and 20's that the general population get in their 60's+ . Because they cannot handle high doses of chemo or radiation (meaning it will kill them) needed to fight cancer, they don't have many/if any treatment options. Macy wants to be a Dentist when she grows up. If we don't find a CURE there is a really good chance she won't live long enough to be the age I am today. This is HER reality. This is OUR reality. One of the challenges about "a very rare disease" is since most people have not heard of it it means they are NOT personally affected by it. It means they are NOT emotionally affected by it. It means they DON'T donate money to help find a cure. May 1st is International Fanconi Anemia Awareness Day. Our small group of families from all over the world are asking to please help us find a CURE for FA. Please help Macy have the chance to become a Dentist, or anything else she wants to be. Please take the $10, $5, $1 that you would normally spend today on something that DOESN'T matter, and spend it on something that DOES matter. Because Macy and all the other kids with FA deserve a chance to live. 
♥️ Please go to and click on the donate button in the upper right-hand corner to donate❤️ OR you can text the word FANCONI to 541-515-7332 and you will be sent a link that brings you to a secure online form to make your donation. If you would like your donation to remain anonymous there is a box you can click that provides that option as well as an option to make your donation in honor of someone (aka: Macy). No donation is too small. All donations are tax deductible. 
Thank you

Tuesday, April 12, 2016

April 2016 blood draw

Macy had her bloodwork done last weekend. It was her regularly scheduled draw that is without an appointment. Adam took her Saturday morning, and said she did pretty well. We used the emla cream this time with press n seal to hold it in place. It seemed to work well for her. She picked out a red, plastic, bendy snake as her poke prize. :) 
Her platelets have dropped a lot; pretty much by 50% since January. They are around 40,000. Her other counts look ok (around the same as they usually do these days). She is typically at her worst (in terms of counts) this time of year due to a school year full of exposure and illness. We will see what her June/July counts look like before I start to worry. Hopefully they will atleast hold steady and not go down too much. Looking forward to summer and staying away from large groups of people! 

Take care,