Exciting News

Mailyna at her 11th bday tea party :)

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

Apprehension

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

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.

Humbly,

Mailyna's mom

10 Years & Full of Life

Last month, we celebrated Mailyna's 10th birthday!  I really wish I started blogging back when I first got pregnant... it would've been amazing to have all of her previous trials & tribulations documented.  Sigh.  At least I'm (sorta) on it now.  I've been meaning to get back on & do a catch up session, but life is busy & it just doesn't happen the way you plan.  Yesterday we participated in the 4th Annual Thalassemia Conference at Oakland Children's Hospital.  It gave me the bump I needed to fire up my blogger app! While there was a great amount of education and information, the most valuable aspect of the conference was meeting the families that are living with the blood disorder.  Hearing their stories and picking their brains was a huge opportunity.   One of the reasons I started this blog was because there is so little correspondence within the Thal Community, but it hits a decent amount of lives.  Hearing personal stories is so different from a doctor telling me about something they heard about a family & blahblahblah.  The other big point was that families become the absolute experts as they advocate for their children, and while I thought I was informed, I learned A LOT yesterday. 

The myth that foods high in iron should be avoided was clarified. The amount of iron consumed & stored is significantly low from food. Majority of the iron overload comes from the blood transfusions, NOT food! Combined with natural chelators, such as black tea, a occasional steak or spinach is perfectly fine! Also, when eating foods high in iron, avoid consuming anything rich in vitamin C. Extra tip for those that NEED iron, eat your steak & beans with some bell peppers & kale :)

There was someone who personally experienced stomach issues due to taking Exjade; a family that has 2 childen that were born with Beta Thal Major and BOTH of those amazing children went through the process of bone marrow transplants and have BEATEN it.  My heart goes out to them and I commend their persistence and knowledge! We also met a resilient young lady that showed so much determination to live her life on her own terms, not the diseases. It was seriously so inspiring!

I have renewed faith that this isn't it. My heart is full of hope that we can use a non-related match for a bone marrow transplant to rid our lives of beta thal major! I still have to speak with her main physicians to pick their brains, but the other part of me wants everyone I know to get tested this very second to see if you're an HLA match! Pretty crazy huh?! So when that moment comes, believe me when. I say I'll be organizing a HUGE drive :)

Mailyna's main advocate,
Mia

Cooley's Anemia Care Walk 2012 - SUCCESS!!

Team Mailyna banner courtesy of my dad :)

Her busted little hand, still smiling!

If you're from the Bay Area, you know that the weather lately has be absolutely gorgeous!  Its lasted about a week of so & luckily, the Care Walk fell perfectly into that!  It has definitely been a hectic few days, but we always make it work!

The day before the Care Walk, Mailyna & I were actually in a Kaiser ER, after she sliced her hand on the fence.  It's a ridiculous story that I'll skip, but gladly, she didn't need stitches or a tetanus, they just wrapped it up after giving it a nice cleaning.  That girl I tell ya!!

So bright & early Sunday morning, I planned on running over to the San Leandro Marina to scope out a spot & wait for everyone else.  Plans rarely every go through perfectly & this one surely gave me a mini panic attack.  I guess I didn't do my research & just figured a walk around the Marina wouldn't be THAT big of a deal... boy was I wrong!  At 845am, the Marina was PACKED!!  There was people everyone, no parking & a 5K set up that day as well.  I had my girls with me, parking was ridiculous & couldn't wander around looking for somewhere to set up... thankfully, my soon to be brother in law was also there to lend a hand!  He was literally a life saver!  We snagged a prime location, 2 tables & everything slowly fell into place.

Enjoying the amazing weather, supporting Cooleys Anemia

The kids got the jump on us adults!

Walk it out!

We started our walk at about noon with 17 adults & 8 kids!  Everyone made it around at least once, which was the equivalent of a mile.  Many of the kids dropped off at the 2nd go around just because it was such a great day & they were anxious to place or hang out by the water... but they were doing so much running around that I know they took more than the 3 miles the rest of us did!

Notice the "Disney" theme!

Afterwards, we hung out at the park, BBQ'd & enjoyed each others company.  It is such a blessing to have family & friends that support Mailyna.  For them to take the time to show her how much her life means to them is something that honestly chokes me up.  We received texts & messages sending their love our way throughout the day as well.  The other amazing thing was the emails I was receiving as we were there. 

A well deserved rest!

Thank you for your support!

The donations trickled in here & there, and for awhile, I was stuck at a stagnant amount & thought that I set the expectation way too high for donations.  By the end of the afternoon, we had surpassed my goal to reach $1000 for the Cooley's Anemia Foundation!  Thank you ALL for donating!  A lot of people have no idea the struggles Mailyna has because she has no physical indications that she has a medical condition.  Many people forget that her condition is life-long and that there is no cure.  9  years ago, the options were limited... but the advancements that have come along in 9 short years, have made a difference in our lives.  So from the bottom of my heart, thank you for contributing to the future research for Mailyna & the rest of the Beta Thalassemia Community.

Here's a quick screenshot us reaching our goal & a special thanks to everyone who go us there!  The site is still up & we would love for you to visit it if you wanted to, but didn't get the chance to donate.  Any amount, large or small, helps in ways your wouldn't believe. 

 For more pics from the even, please click HERE.

To make additional donations or visit our fundraising site, please click HERE.

One grateful mama,
Mia

Kaiser Complaint Results

The other day, I received a letter (2 months after our horrible experience) with the results of my complaint.  Pretty much a standardized apology, how they strive for positive experiences & all that blah blah blah.  They reviewed the situation & supposedly required some kind of training to avoid situations like this in the future.  I have to say it's basically what I expected... absolutely nothing.  To be honest, the irritation about the situation popped back up after reading it.  The kicker was the last line or so that specifically stated "unable to disclose results".  I'm not sure if thats standard or if that was something they decided to include because I blogged about the situation.  Ohh Kaiser... I'm glad the majority of our time is spent with the Hem/Onc team & not the peds floor at the hospital, otherwise I'd be looking for a new healthcare team.  Who knows how the situation was truly handled, but I'm done with it.  Mailyna is healthy & recovered from the surgery & hopefully we wont have a need to be back in the hospital for anything other than her transfusions.  

Til next time,

Mia

Care Walk 2012 - Sunday May 6th

Hi everyone!  It's been a hectic lately, but things are finally starting to get back to normal!  I'll be having the little miss post later today to give you a feel for her progress since the surgery.  For now, I wanted to see if we can gather up a few supporters/walkers for the Cooleys Anemia Care Walk 2012!  Last year, we had planned on walking, but we found out about it AFTER we already had our family vacations planned & there was no way we could change our flights.  So this year, I'm determined to get a lot MORE people involved!

The Care Walk is great because it is really up to US to decide the factors!  So here it is... We're planning on walking the San Leandro Marina starting at 11am on Sunday, May 6th.  Its a short 3 mile walk/run for the event.  I also thought it would be nice to have a picnic afterwards for all of our hard work!  Potluck of course, anything you would like to share would be amazing!  Please take a look at the link below & join our team!

https://bos.etapestry.com/fundraiser/CooleysAnemiaFoundation/CareWalk2012/team.do?participationRef=592.0.117988510

We'd love to have you pass the word along to anyone else you think would be interested as well.

The other nice thing about this event, is that its all about support.  It doesnt matter if you cant make it to the Marina to walk with us, if you take the time to walk yourself, you're supporting the cause!

Thank you again for your continued love and support for our family!  Please feel free to email me or comment if you have any questions!

-Mia