Sunday, January 26, 2014
Our appointment Friday morning at UCSF was quite promising. We MIGHT have found a match! Our doctors are submitting the request to the national registry to the possible donor & requesting additional testing. If that person agrees and is willing to donate marrow, we can proceed with making the final decision to begin the transplant process. If it's just plasma, all bets are off, as it's too risky and most likely wouldn't take. Our appointment was full of mentions of the many medications, chemo drugs, the worst case scenarios, breakdown of the weeks we'll spend in the hospital, the recovery months to follow in isolation, and what will follow that. The words "information overload" are as accurate as it gets. So basically we're back to the waiting game. We have a couple weeks til we hear back on what comes next. After that, we shall see!!
I'd still really encourage friends, family & anyone reading this to still sign up for the bone marrow registry. Our potential donor can back out at any time, or there may still be a better match out there for her! And to be quite honest, there's a world of people out there that are looking for their match. I want to think that anyone willing to get tested for Mailyna would be willing to help the stranger that may need them. I know it's terrifying, but we asked the doctor exactly what the process was & it's really not as bad as you'd think! The harvesting process is done under general anesthesia, where a hollow needle is inserted into the hip bone & the marrow is extracted. Bone marrow is regenerative, so you won't miss it at all! There is soreness at the site, but they'd be discharged the same day & generally go back to their normal routines the very next day. Pretty easy way to save a life, if you asked me! I get asked "what can I do to help" all the time & that is it. Donate blood if you can, sign up for the registry and encourage your friends/family to do the same. And if you ever way to send Mailyna a hello note, I'm more than willing to share our address! Thank you all for your love & support!!
xo, The Mama
Wednesday, January 22, 2014
With a nights sleep between now & Mailyna's UCSF appointment, the nervousness is driving me crazy. I've been sleeping less and exhausted more. Anxiety is something I've always struggled with, and this is intense. Feeling helpless and lack of control are two of my weaknesses. Finding a match for Mim is something I've been praying for since the moment I found out it was an option, but I'm beyond scared. While looking for a match has been a year long road so far, that's really the easy part.
Once we find a match, the donor can back out at any time. There is chemo to kill off her bone marrow. Chemo for transplant patients basically brings someone to an extreme point of sickness, before bringing them back to life with the new marrow. And that isn't a quick process... Her hair, that she loves so much, her eyebrows & lashes will all fall out. Vain, I know, but she's a preteen girl. And let's face it, I'm her mother & she sees how much care I put into my looks. Mouth sores, gastro issues, skin changes, weightloss. For weeks, her immune system will be so weak, that she'll be in isolation. Away from her sisters, family and friends. When she is finally strong enough to go home, she still won't be strong enough for family visits, school, yoga, Eskrima, trips to the grocery store, to the movies, to the mall... none of it. Then there's always the chance her body will reject the marrow. Ohh and some chemo medications can also cause infertility. Sigh...
Now let's say the bone marrow transplant works, it's still not the end. We'd have follow up appointments like crazy, to make sure the recovery is going well. All in all, it would take her (and us) out for roughly a year. Also, after 11 years of transfusions, iron overload will still be a problem and to get rid of the excess iron, we'd go in to have a pint of blood taken from her (phlemotomized), which is basically the opposite of what we're doing now with transfusions, but much easier and faster, for a couple of years.
It may sound odd, but as challenging as it was, we easily adapted to life with beta thal. We quickly learned how to manage the transfusions every 3 weeks, administering desferol treatments, exjade routines, surgeries, countless appointments, parent-teacher conferences, school... I even send her to camp in so cal for a week during the summer, without us! But this, this is new territory and I'm absolutely terrified. The reward of a life free of beta thal does outweigh the risk, but the risk is a scary road as well. So, we shall see.
-one stressed mama
Tuesday, January 21, 2014
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.