Tuesday, January 21, 2014

Change on the Horizon

Since the last post in 2012, there has been so many changes & developments for us. New hope, friendships and support... But also heartache. In December of 2012, we began the hunt for a bone marrow donor. The first ray of hope, when for the 10 years of Mailyna's life, I always assumed that Beta Thalassemia would just be our life.  We connected with an amazing group called the AADP (Asian American Donor Program; AADP.org), who has helped us reach out in the Bay Area in hopes of finding a match.   We had several drives and the support we received from our family and friends, and extended circle, was phenomenal.  So many people, who didn't even know us, wanted to help. We had a drive with our family & friends to start it off.  That was slightly hard to endure, when those you expected and hoped to be there, weren't... But also amazing to see strangers and people who were acquaintances or those who knew us only through a 6th degree of separation, not close at all, there for us. Certainly a defining moment in seeing who really was, and is there for Mailyna and our family.  Even Sephora held a drive at the corporate office for us. Every wave of people that came in to sign up, choked me up. Strangers who cared. That day we signed up 70+ people. I cried, and I mean CRIED, when I thanked our dept director for her help in setting it up & their kindness to our family.

The most heartbreaking moment for me, was when our doctors said that after a few months of their search, the national registry came back without any viable matches. It was rough to hear, but knowing that Mims could wait for that perfect match since beta thal is something that we've had under control, while so many other are in dire need, somehow made it okay. 

There was a major push in trying to get people to sign up thanks to the "Save Nina" campaign, when she was given 3 months to find her match. Social media helped push hard & every where from the Bay Area to Hawaii to New York had people signing up. The site that I moderate for work, a beauty company, had people talking and encouraging others to sign up.  It was sheer relief when I saw her Facebook fan page update that they found her a match.  Even my guilty pleasure General Hospital (I know, I know) had a story revolving around a character needing a transplant & them looking for a donor. We also met a brave young lady who received a transplant & met her donor, which gave us so much hope. 

Around the holidays 2013, roughly a year into our search, my heart was heavy. Several success stories of patients we've connected with (via social media and AADP), had found matches. While putting on a brave face & downplaying my disappointment, it was slowly starting to break me. The emotional instability of being nonchalant & not letting anyone in on it had me secretly in tears more moments than I really care to admit. 

That also played a major part of me not wanting to post any updates. While the support for Mailyna and our family is so helpful, letting people in & showing my insecurities as a parent is something that I'm not completely comfortable with. I'm the strong one, that isn't allowed to be vulnerable. I never let Mims know I'm worried about it & I'm always pushing her to be brave. The moment her eyes gloss in angst, mine are suppressed. I can't let my guard down, because I'm protecting the precious cargo that is my daughter. It is rare, and I do mean RARE, that anyone beyond my family, sees the side of me that breaks. And even THAT is a rarity. It is easier for me to be almost emotionless, than to cry every moment that I want to.  Well over a year later & our follow up is this week. The sleepless nights, the anxiety, the wondering... It's all eating away at me. It's been a year of impatiently waiting & we aren't giving up hope. 

Another update is on the horizon... so I'm asking for prayers, well wishes, good juju... Anything positive you've got, we could use it. She is a brave young lady, that shouldn't have to be that strong.  Mailyna's spirit is like none other & I'm beyond proud.

January 16th, 2014, marked her 146th transfusion. Somewhere around April, most likely 4/10 if my calculations and scheduling are correct, will be her 150th blood transfusion.  What a blessing it would be to NOT hit that milestone. I honestly couldn't imagine that.


Mailyna's mom

1 comment:

  1. I'm praying and crossing my fingers and toes for a match for Mims.