tag:blogger.com,1999:blog-41196544240518733132024-02-21T03:39:36.388-08:00Beta Thalassemia Major & LIVINGI decided to begin an account of the struggles & triumphs my daughter faces on a daily basis, living with Beta Thalassemia Major (Cooleys Anemia). She's an amazing, vibrant, beautiful little girl, that has more experience, wisdom and grace than some adults out there. Hopefully our story will open doors to meeting & connecting with others that have similar lives. Thank you for reading!Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-4119654424051873313.post-71064458034038954362016-02-01T21:43:00.001-08:002016-02-01T21:43:10.109-08:00A Long Time Coming<div style="text-align: justify;">
For almost 2 years now, I stopped posting, for the sake of updating purely on Mailyna's Facebook Page. It was an easy outlet (and still is) since it is connected to my personal facebook, especially when she was in the hospital. The visibility (and accessibility) just makes so much more sense! But I didn't want to just let this blog slip away into oblivion. To see what the last 2 years have been filled with, please check out her FB: <a href="https://www.facebook.com/AMatchForMailyna/">AMatchForMailyna</a></div>
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It's been almost 2 years now. The last time we shared an actual blog, Mailyna was getting ready to go into the hospital for transplant. 5 weeks in the hospital, 97% of it in isolation. The chemo was terrible, but the days to follow were worse. We slowly watched this little ray of sunshine burn out, day by day. But as the weeks passed by, the sparkle never left her eyes & she slowly, but surely, returned to us, stronger than ever. Every bit of her recovery was more than we could have hoped for. The doctors & nurses all loved her & shared how amazing she was doing! She was sent home weeks earlier than actually expected! Her hospital stay was followed by 6 months in home isolation. Since it was the 2nd half of the year, Mailyna spend her birthday, and all of the holidays from June-December, with our small family, to ensure that no extra viruses entered our home or Mailyna's immune system. Our family was blessed to have her released from isolation on Christmas of 2014. </div>
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Mailyna went back to school January 2015, almost a year after she left for transplant. The 2nd half of the school year is hard to jump into! Mailyna went back a different person. She lost friends that she thought were her besties, but it built up her character, to know who had her back. </div>
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When we hit the one year anniversary of her transplant, we crossed our fingers, in hopes of reaching out to her donor. As luck would have it, this wonderful angel that saved my baby, was just as eager to meet us! We coordinated with the <a href="http://www.aadp.org/">AADP</a>, who worked with our donor, and over the summer of 2015, Mailyna & Kristine were able to embrace each other with open arms!</div>
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After starting school in the 8th grade, life seemed to resume back to normal. Every 3 weeks, we go in for phlebotomy, to get rid of the excess iron. It is the most effective, versus chelation therapy. After leaving the hospital, her iron levels were nearly 1600. At her last appointment, she was at about 800. To (finally) have her port removed, she should be at/below 500. We're almost there! </div>
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I'm hoping to really pass this along, so that this blog can really be about Mailyna, by Mailyna. She's 13 (I know, right?!) and she has grown into an articulate young lady. She has spoken at several events in support of <a href="http://aadp.org/">AADP</a>, as well as <a href="http://baykids.org/">BayKids</a>, a nonprofit in the Bay Area, that works with children in local hospitals, to empower them with art & film making, to help distract them from their ailments. Her acceptance speech and her short film, are both below.</div>
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I hope you enjoyed the crash course of the last 2 years! Please visit her FB, <a href="https://www.facebook.com/AMatchForMailyna/">AMatchForMailyna</a>, for a better detailed account of her journey. Thanks for checking in with us!</div>
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-One busy mama</div>
Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com1tag:blogger.com,1999:blog-4119654424051873313.post-88111925981260215192014-05-05T17:38:00.002-07:002014-05-05T17:38:45.705-07:00Cinco de Marrow<div style="text-align: justify;">
A year ago, we were camped out at Lake Elizabeth in Fremont, asking our friends & family to sign up for the national bone marrow registry through AADP, in hopes of finding Mailyna a match. Throughout the year, we waited & waited, and a year came & went that we started looking for a donor. Over the holidays, my heart was so heavy when that one year mark hit. I thought it just wasnt meant to be & I silently carried that burden on my own. Then I found out there was a <i>potential </i>donor & we were asked to go in for a consultation to talk about it. Then there was more waiting... for the rough flu season to end, then for the donor to agree. In 3 days, THREE DAYS, Mailyna will receive the ultimate gift from someone we may never know. </div>
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She has been in the hospital for a little over a week now & is feeling the effects of not only the chemo, but the isolation. Its a tough thing, to be away from your family & friends, in a room that you cant leave, staring out the window & longing to feel the sunshine or wind in your face, or wishing you could hug your crazy little sister. The things we often take for granted. </div>
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We are so lucky to live in the age of technology. Being able to share our story with our friends and family, give them instant update on Facebook, or facetiming/Google Hangouts... its a blessing. It's an age that allows people to stay connected. 2 family parties over the weekend & it was eating away at Mailyna that she was stuck in the hospital. She was able to be there to chat with everyone AND during the birthday cake... Thanks Steve Jobs!! </div>
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But really, today marks a special day for us & reminds me how blessed we are. From our enormous support system, to our team of medical staff, to the kindness of our friends & family, and their friends and family... we are BLESSED!! </div>
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aadp.org/donate</div>
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facebook.com/amatchformailyna</div>
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http://www.gofundme.com/amatchformailyna</div>
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#amatchformailyna</div>
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Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-41655454832716802172014-01-26T00:09:00.001-08:002014-01-26T22:27:30.827-08:00Exciting News<div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrYcVGug5Xy-T6-XqPCBYGapoZbWtI4p5y0n8kjZJJDE00hh8h3sgNy0JqvOSnQPqXRxlHz5hpKRO3FISsFmvu2gjThdwwJfMQ8aXmnSv1SD9IpBAJzlTwO32Cnk3aN1G7zDZzcBP5z6Y/s640/blogger-image--1563320317.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrYcVGug5Xy-T6-XqPCBYGapoZbWtI4p5y0n8kjZJJDE00hh8h3sgNy0JqvOSnQPqXRxlHz5hpKRO3FISsFmvu2gjThdwwJfMQ8aXmnSv1SD9IpBAJzlTwO32Cnk3aN1G7zDZzcBP5z6Y/s640/blogger-image--1563320317.jpg"></a></div><div class="separator" style="clear: both;">Mailyna at her 11th bday tea party :)</div><br></div><div class="separator" style="clear: both;"><br></div>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. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">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!!</span><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">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!!</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">xo, The Mama</span></div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-40353844005661009202014-01-22T23:11:00.001-08:002014-01-24T01:32:14.394-08:00Apprehension<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_UyzkRHtvuK_FXPpUqRSBUJJi389Ho1aFhgS9ZhbObponlhh4QtEkou_EhGOFzK_pt66HTOap6Km3lFmJojvK46h6BBytnAi42SyXM3qH1pqbXqw8nexfWbFyhwtWgp9-KerlVMPbXW4/s640/blogger-image--1781640371.jpg" imageanchor="1" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif; margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_UyzkRHtvuK_FXPpUqRSBUJJi389Ho1aFhgS9ZhbObponlhh4QtEkou_EhGOFzK_pt66HTOap6Km3lFmJojvK46h6BBytnAi42SyXM3qH1pqbXqw8nexfWbFyhwtWgp9-KerlVMPbXW4/s640/blogger-image--1781640371.jpg"></a></div><div><br></div>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.<div><br></div><div>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...</div><div><br></div><div>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, a<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">fter 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. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">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. </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">So, we shall see.</span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">-one stressed mama</span></div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-27136129122472380222014-01-21T00:51:00.001-08:002014-01-21T00:52:11.114-08:00Change on the HorizonSince 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. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> We had several drives and the support we received from our family and friends, and extended circle, was phenomenal. </span>So many people, who didn't even know us, wanted to help. We had a drive with our family & friends to start it off. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> 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.</span><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">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. </span><div><div><br></div><div>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. </div><div><br></div><div>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. </div><div><br></div><div>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. </div></div></div><div><br></div><div>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.<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ2rMI8y0c-DicT1bFU54IkryBRxJB08bYaf7OgE-7b9vpeiNU59755B0bSuF4SB-A7WFPQyt6DEzgECHKed3jaRcVRy4JHWf_VtnZA-OETa4R6SzSsmHpoq0jgIcYA9raYPsSIXxV2cU/s640/blogger-image--921163357.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ2rMI8y0c-DicT1bFU54IkryBRxJB08bYaf7OgE-7b9vpeiNU59755B0bSuF4SB-A7WFPQyt6DEzgECHKed3jaRcVRy4JHWf_VtnZA-OETa4R6SzSsmHpoq0jgIcYA9raYPsSIXxV2cU/s640/blogger-image--921163357.jpg"></a></div><div class="separator" style="clear: both;"><br></div>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.</div><div><br></div><div>Humbly,</div><div><br></div><div>Mailyna's mom</div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com1tag:blogger.com,1999:blog-4119654424051873313.post-41925098223751829702012-10-07T16:38:00.000-07:002012-10-08T20:30:04.376-07:0010 Years & Full of LifeLast 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. <br />
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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 :)<br />
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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!<br />
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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 :)<br />
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Mailyna's main advocate,<br />
Mia<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnwGRH9VjYzc1krHZjf3dyftXQd8TQuFYaY4Izm2ctEAMGTCxrdEzzG7CmGQN5Ohr8LiVPGVfaRtOBiqSlPQNmRsE-A8tlpqeK8G0pRLHIvn8EEOXmvanpnRMkTfllamocg2P5LbYTZTY/s640/blogger-image-1104972152.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnwGRH9VjYzc1krHZjf3dyftXQd8TQuFYaY4Izm2ctEAMGTCxrdEzzG7CmGQN5Ohr8LiVPGVfaRtOBiqSlPQNmRsE-A8tlpqeK8G0pRLHIvn8EEOXmvanpnRMkTfllamocg2P5LbYTZTY/s640/blogger-image-1104972152.jpg" /></a></div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-80879299384244156562012-05-09T00:18:00.003-07:002012-05-09T00:18:24.060-07:00Cooley's Anemia Care Walk 2012 - SUCCESS!!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Team Mailyna banner courtesy of my dad :)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Her busted little hand, still smiling!</td></tr>
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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!<br />
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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!!<br />
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">Enjoying the amazing weather, supporting Cooleys Anemia</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The kids got the jump on us adults!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Walk it out!</td></tr>
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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!<br />
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<tr><td class="tr-caption" style="text-align: center;">Notice the "Disney" theme!</td></tr>
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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. </div>
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<tr><td class="tr-caption" style="text-align: center;">A well deserved rest!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Thank you for your support!</td></tr>
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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.</div>
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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. </div>
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For more pics from the even, please click <a href="https://www.facebook.com/media/set/?set=a.3856074769703.171289.1513360295&type=1">HERE</a>.</div>
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To make additional donations or visit our fundraising site, please click <a href="https://bos.etapestry.com/fundraiser/CooleysAnemiaFoundation/CareWalk2012/team.do?participationRef=592.0.117988510">HERE</a>.</div>
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One grateful mama,<br />
<i>Mia</i><br />
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<br />Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-27655996341652082282012-05-03T00:44:00.001-07:002012-05-03T00:44:43.873-07:00Kaiser Complaint Results<div class="separator" style="clear: both; text-align: center;">
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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. </div>
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Til next time,</div>
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<i>Mia</i></div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-21719768554646039822012-04-10T12:48:00.000-07:002012-04-10T13:20:17.415-07:00Care Walk 2012 - Sunday May 6th<div class="separator" style="clear: both; text-align: center;">
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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!<br />
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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! <br />
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<a href="https://bos.etapestry.com/fundraiser/CooleysAnemiaFoundation/CareWalk2012/team.do?participationRef=592.0.117988510">https://bos.etapestry.com/fundraiser/CooleysAnemiaFoundation/CareWalk2012/team.do?participationRef=592.0.117988510</a><br />
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We'd love to have you pass the word along to anyone else you think would be interested as well.<br />
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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! <br />
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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!<br />
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-MiaMsmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-38200485262047796432012-03-12T16:14:00.001-07:002012-03-13T14:17:49.477-07:00After the Surgery Thoughts<div style="text-align: justify;">
Hi Everyone! I wanted to thank everyone for all of the love & support you've shown our family! Without all of the prayers, well wishes, cards and notes, the day would have been a lot harder to endure. I wanted to give you all a recount of the day & to let you know about our experience. For being a long time Kaiser member, I was SHOCKED at the 48 hours we had to deal with. This was definitely not our first visit or surgery, but if it was, we would never, ever go back. This is probably the most heavy post yet, so I apologize if it takes up way more time than you anticipated! </div>
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Here is what I <i>thought </i> was going to happen:</div>
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Check in Thursday afternoon after Mailyna gets out of school, get her transfusion, surgery first thing in the morning, home by 5 on Friday (surgery, recovery, traffic etc.)</div>
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Now here is what <i>REALLY </i>happened:</div>
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Call Wednesday night to confirm what time we should come in, was told to call back Thursday morning & speak with Betty, the Charge Nurse for Thursday. Call in 9am Thursday & speak with Betty, she said to call back around 3pm to confirm, but we would most likely need to come in around 7.</div>
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On my way home from work at 530, I get a call from someone in the Surgery Scheduling Dept & they wanted to know why I hadn't called in to confirm we were being admitted, telling me to come in at 1pm Friday. Umm, WHAT?! I spoke with a few different people after that & let them know that we were expected to be admitted in a few hours & that Peds already had a bed waiting. She got a little flustered & said she would call me back.</div>
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I then called the Peds floor again to see if things had changed & started asking a lot of questions. What time is her actual surgery? What time are we supposed to be there? Why does admitting have us down for Friday? WTF is going on?! I spoke with a nurse that picked up who couldn't give me a single answer & sighed at me in irritation at my many questions. She passed me along to Betty, who was as rude, condescending & ridiculously unhelpful as I've ever experienced. I attempted to see why our surgery was scheduled so late in the day & while I understand that younger children take priority because they cant go as long without food, the way she phrased it was unimaginable. For normal surgery, you aren't able to eat AFTER midnight for something scheduled 1st thing in the morning. If my daughters surgery isn't until 3pm, what is the latest time she can eat?</div>
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Betty: "She cant eat after 12am. That's our policy & we do it all the time. We know what we're doing."</div>
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I had so many questions & I could tell she was irritated that I would just take her BS answer & leave her alone. What was the point of us going in the night before? Because Mailyna needed her transfusion before the surgery. That I get. </div>
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Mia: "Can anything be done so that we just come in 1st thing in the morning to get her transfusion done & then have her surgery done at the scheduled 3pm time?"</div>
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Betty: "Your doctor said you need to come in, that's what you need to do. We cant change anything for you."</div>
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So we said screw it & headed to the hospital at 730. At admitting, the lady STILL had no idea why I was there & said I wasn't supposed to be there until 1pm Friday. I told her to call Peds. Finally we were brought upstairs & taken to 3 different rooms, all of which were full. I ended up speaking w/ Melinda, who was more than helpful & did everything she could to try to figure out the huge disconnect. They said that the couldn't give me a definite time for her surgery the next day, but said it may be closer to lunch time than the morning. She was also a lot more reassuring when explaining that they would do what they could to get her squeezed in & even called the surgeon up to speak with me. Mailyna's dad was coming from San Jose with Mims sister & didnt know what time to come. Mims pop works graveyard & prob wouldnt get any rest. My parents were supposed to come by because they had Jassy & wanted to be there before she went in. Fricken mess.</div>
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<tr><td class="tr-caption" style="text-align: center;">Enjoying all of her cards!</td></tr>
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After grabbing some food, we finally situated in the room. I felt like that was the perfect time to surprise her with all of the thoughtful cards our family & friends sent over! An hour later, after Mailyna & I were hanging out, someone finally came in to take vitals right before midnight. Our nurse Mylene, took us over to get Mims IV started in the treatment room about 12:15. There, the other lady (I didn't get her name) set her up to get the IV in. Now I will admit that Mailyna is no walk in the park when it comes to peripheral sticks. She was anxious & kept pulling her arm whenever she got near or touched her arm. The lovely way she choose to sooth my child?</div>
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"If you don't calm down, I'm going to send your mommy away"</div>
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Wow... That didn't calm Mailyna down & I was ready to shove that needle in her neck for talking to my distraught child. They finally accessed her & we were back in the room at 12:50am. That's about the time Mims got back to her last blog & we were down for the count by 130. Sometime throughout the night, someone came in to wake me up to sign some consent forms for the blood & I fell back asleep hoping things would be better when I woke up. Wishful thinking.</div>
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<tr><td class="tr-caption" style="text-align: center;">Making faces while she took her meds</td></tr>
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We were waken up at 630 for Mailyna to take her meds & she was less than thrilled to wake up. Luckily, her dad & sister Malia had shown up, so she was not as upset at the thought of staying awake. Shortly after she finished her medicine, our nurse Mylene came in & explained that there had been a problem at the blood bank & Mailyna still had not received her blood. You can only imagine what happened next. Anger, frustration and disbelief mixed in with hunger & lack of sleep turned me once again into the mama bear from hell. Mylene reassured me that they would still be done on time in case Dr Chong could fit her in. The blood started around 715am... which totally negated us coming in the night before.</div>
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Our second nurse Katie was amazing at helping distract Mailyna. She came up with a game & drew out boxes in increments that corresponded with 30 min tv shows. Basically how many shows she would watch before her scheduled surgery time. 12 boxes. That's right, 6 hours. I was also able to have a conversation with me regarding the situation we were dealing with & attempted to sympathize with me. In fact, she also confirmed who I spoke with the night before & that it wasn't the first time that the lovely manager of the Peds unit, Betty, was a total bitch. From what I gather, she is a "seasoned nurse" who is set in her ways & is used to telling people something & having them follow her lead mindlessly. But that's just MY opinion. Katie was great & I commend her for taking that time with a crazy mom.</div>
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<tr><td class="tr-caption" style="text-align: center;">Her sad little face right before she went into surgery</td></tr>
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Time passed & she started expressing hunger around 10am & I started to get more irritated by the minute. Luckily she fell asleep & wasn't constantly thinking of food. Right before noon, our 2nd nurse had come in & told us that the OR called up & would be taking her down right then for surgery. As we were trying to get into the elevator to go down to the OR & the attendant that was bringing her down & the other 2 people let it close without us in there... so basically they took my anxious child without us. Luckily one of the doctors we are familiar with saw it happen & took us down immediately because surprise surprise, we didn't have access to the floor. Seriously. We left her side around 1230-1245pm & went to wait in the cafeteria. After a quick bite, I sat in the lobby & found the rest of my family. By 141pm, I received the call that she was out & to meet them in recovery.</div>
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I want to say that the surgery time itself was quick & before I knew it, I got the call to meet them in recovery. It took her some time to wake up & she was completely freaked out. The anxiety of coming out of anesthesia was horrible. The nurse, as sweet as she was, didn't recognize that Mailyna was more distraught than in pain, and gave her two doses of morphine within 3 minutes. Luckily another doctor wandering the area came over & realized that the cry she had wasn't so much pain, but more anxiety. We've encountered that before, where Mailyna (and kids in general) come out of anesthesia & are inconsolable & just cry uncontrollably. Thank God for this guy, within minutes, she was calmed down & falling asleep.</div>
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<tr><td class="tr-caption" style="text-align: center;">After surgery, trying to come out of anesthesia</td></tr>
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We were taken back up to Peds 240 & brought back to the room (which I honestly dreaded, I even asked if we had to go back up at all, or if we could just be discharged from the recovery room). Back at the room, they didn't have the bed ready & we had to wait a few minutes to get her back & situated. While we were standing at the front door, with all of our family, Mims was nauseous from moving around & ended up throwing up the water. While I was tending to her, what I <i>didn't see </i>was two women who worked there sitting nearby, basically talking about all of us. Motioning towards us, rolling their eyes & having a private conversation about our family. It wasn't brought to my attention until after I was finished settling Mailyna into the room & getting her comfortable. After a few hours of letting Mailyna get settled, we were able to leave a little before 5pm. The discharge was quick & we blew that popsicle stand as quick as we could.</div>
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<tr><td class="tr-caption" style="text-align: center;">2 pushes of morphine later</td></tr>
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The whole situation that we endured was ridiculous. There was a complete lack of communication from almost everyone that worked there. As a long time patient, previous employee & parent, I'm appalled at lack of bedside manner, communication, compassion & professionalism that Kaiser has provided. I'm not a parent that will just take what someone says & mindlessly follow. I do my research, ask questions & follow up to make sure that everything we are doing is efficient and in the best interest of my child. Our family has been with the Kaiser Hem/Onc since before she was even born, and I absolutely adore them. If this was my very first encounter, I would've run for the hills. </div>
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<tr><td class="tr-caption" style="text-align: center;">Fentons for the win!</td></tr>
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I plan on filing a formal complaint for the situation. I believe the quality of care we received was far beyond poor. For a pediatric environment, it was horrid. I felt as though my daughters needs were not met & were not taken into consideration without my persistence. We seemed to be an inconvenience to a few people & that definitively needs to be addressed. My choice to share this experience for basically the world to see, is in hopes that other parents will push back when they feel they are being slighted & have the courage to stand up for themselves & be that advocate that their children need. Unfortunately my relationship & need for hospital care will not end here, but I do have high hopes that this will be the last time we have an experience THIS BAD. The thing that irritates me more, I feel like they were making more about us being stuffed into a 3 bed room in the middle, than all of the other little factors. Like we were entitled princesses that wasn't getting their way. Seriously.<br />
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On a brighter note, after leaving the hospital, we strolled over to Fentons to treat ourselves to some deliciousness! It completely brightened her day! A huge thank you to my family for standing by, supporting & praying for us!</div>
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Please feel free to share, re-post, re-tweet to make people aware!</div>
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One tired mama, <i>Mia</i></div>
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<br /></div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-65118346017094186192012-03-09T01:23:00.000-08:002012-03-09T01:30:26.161-08:00Here at the hospitalMailyna the night before:
Right know I'm at the hospital getting ready for my transfution and my surgery. Before we got settled my mom had to
yell at the nurses. She had to yell at them because they weren't giving me a good room. After that everybody had to
wate in the family room. After that my mom went into the room to talk to the nurses. Then, after that all of us went to
get some food at Church's Chicken.
12:10am
Just now I got poked on my wrist. It really hurts whenever someone touches it. While they where looking for a vain on
my arm,I was moving around and trying to get away from them! My mom was trying to keep me from moving around and keeping me from kicking or anything else. When they poke you ther isn't any needle inside of the tube. I had all kinds
of tears all over the place. After they poked me I cryed a lot. After that I realized that my nurse wasn't that nice!
I'm sad and mad. I'm sad because my wrist hurts. My wrist hurts because the tube is in my skin. Also I'm mad because the nurses were mean! They were mean because I wasn't listening to theme. I wasn't listening because I was sad and nervouse.Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com2Oakland, CA, USA37.8043637 -122.271113737.7039972 -122.4290422 37.9047302 -122.1131852tag:blogger.com,1999:blog-4119654424051873313.post-63664161636940961992012-03-08T16:00:00.003-08:002012-03-13T14:40:01.428-07:00Less than Normal<div style="text-align: justify;">
Long time no blog! Its been pretty hectic lately in our lives. I've been busy with the girls & family time ... really trying to make the most out of the time that we're all home & together. It just hit me this morning that Mailyna's surgery is only a few hours away... What makes me feel horrible is that I'm not panicking out of control like I did the first time. It makes me feel like I'm a bad parent for not constantly dwelling on her condition & all of the factors surrounding it. A part of me is in denial until they wheel her away... the other part of me is so "matter of fact" because I know its what we have to do & there is no way around it. I know tomorrow, I'll probably be a hot mess once she goes in. But anytime Mailyna looks into my eyes, all she needs to see is trust & strength to know that I'm there & that I have complete faith that shes safe in the doctors hands.<br />
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I've had a few people get super panicked & filled w/ concern when I tell them, and I completely understand the reaction. That's the normal reaction. They aren't living our life. They don't know the back story, or the complications we've faced... so its hard to relate. If anything, all Mailyna needs is a little comfort. <br />
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The other day, I asked if anyone wanted to send over a little card for Mims, to give her some encouragement. Its pretty amazing, at any age, to have someone wish you well & brighten your day when you're feeling scared or helpless. Our lives are so hectic & complicated, and slowing down is the last thing you want to do... but finding that time & the goodness in someone elses heart when they take that time to sit down & literally make a child smile, that is something that makes my heart soar. It seriously brings me to tears when her sad little face lights up from the love & support our family & friends provide. <br />
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I originally wanted to have her blog tonight after we get to the hospital, but I might do something a little bit different. It depends on how she's feeling, how my internet connection is & how much power I have with my laptop. Either way, you can expect to hear from us later today. Thank you again to everyone in our lives. Without your support, days like tomorrow would be a lot harder to face.<br />
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xo, Mia</div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com2tag:blogger.com,1999:blog-4119654424051873313.post-14812154460842627962012-02-07T23:12:00.000-08:002012-02-08T15:04:45.649-08:00Surgery Thoughts from Mailyna<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-left: 0px; margin-right: 0px; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-snc7/431322_2934472714409_1038798578_3038804_1622997745_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-snc7/431322_2934472714409_1038798578_3038804_1622997745_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mailyna & her sis Jassy @ the San Leandro Marina</td></tr>
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Well, as you can tell, Mailyna never went back in to recount that last transfusion. I'm 100% sure she just didn't want to re-live it, and I'm ok with that. We finally got the logistics out of the way & have her surgery set up for March 9th, roughly a month away. After much talk with Mailyna & my family, we've decided to not just remove her port, but to replace it. Its a complete heart breaker because I was excited for her to not have to worry about all of those added concerns that come with the port in her teens. But when it comes down to it, her little veins probably wouldn't fair well with the beating a transfusion every 3 weeks would give it.</div>
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<tr><td class="tr-caption" style="text-align: center;">Mailyna on her 1st birthday</td></tr>
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Thinking back to the day she originally had the surgery to put in the port is a real tearjerker. Mailyna wasn't even one when we made the decision. I was devastated that we scheduled it a few days before her 1st birthday. I remember vividly this little tiny angel wobbling around on her 1st birthday at the park with a dressing on her chest that I watched like a hawk. I remember the morning of the surgery when they gave her the sleepy gas & her loopy little smile as I took her honu earrings off... She has had a ton of procedures done, many of which she needed to be put to sleep for, yet each time, I feel the tears well up in my eyes & that lump in my throat. I try my hardest every day to stay strong & tough so Mailyna knows shes taken care of & that she doesn't have to worry, yet for those few hours, I'm completely vulnerable & know its all in Gods hands.</div>
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Each procedure gets both easier & harder, for the same reason. Mailyna is getting bigger & understands she needs to have procedures done, but questions it more & more. I gave her a chance to blog a bit about her thoughts about the upcoming port replacement & from the looks of it, shes got a great understanding of the importance of the surgery. I know shes actually a little relieved to have it done since the port gave us such a horrible time. Here's her thoughts:</div>
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<i>"In March I am going to have a surgery. I am scared about it . I am scared because I think they might do something wrong. I also feel that way because I might wake up in the middle of the operation. I have had this port ever since I was little. I also feel happy about it. I feel that way because once I get my new port the doctors won't have trouble accessing my port. The surgery will take a couple hours. The day before the surgery the nurses and doctors make sure that I don't eat any food. In the night time, before they start the surgery they give you some sleepy medicine. After you take the medicine you start to feel drowsy, then you fall asleep. When you don't know it they begin the surgery. The nurses are very nice. When the surgery is done the doctors tell you that you did great. When they tell you the results you need to sit there for a little bitt longer. Sometimes after you wake up some of your visitors are there to see if you are ok or if you need help with anything. When you wake up you sometimes feel dizzy. You might feel dizzy from the medicine. After the surgery I have to go to a transfusion. I have go to a transfusion so that they can test out my new port. I think that my port will work and cooperate. I think my port will work and that they don't need to put any more medicine. My port will be all better after the surgery. I think that because I trust the doctors that they will fix my port.</i></div>
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<i>-Mailyna"</i></div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-41872342576974722642012-01-22T16:15:00.000-08:002012-01-22T16:15:56.865-08:00Positivity & Looking Forward to Something<div style="text-align: justify;">
After the craziness of Friday, it was a breath of fresh air to get a large piece of mail yesterday, from <a href="https://www.facebook.com/paintedturtlecamp?sk=info">The Painted Turtle</a>. If you dont recall, Mailyna went away to camp last year at The Painted Turtle in SoCal last summer. It was her very first time that she was away, without family. Heres a little bit about the program:</div>
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<br /><i>"The Painted Turtle is a year-round nonprofit camp for children with serious medical conditions and a member of the Association of Hole in the Wall Camps. All campers and their families attend camp free of charge. http://www.thepaintedturtle.org/<br /></i><i>Company Overview</i></div>
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<i>The Painted Turtle is a nonprofit year-round camp for children with serious medical conditions and a member of the Association of Hole in the Wall Camps. All families and campers attend camp programs free of charge.<br /></i><i>Mission </i></div>
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<i>The Painted Turtle seeks to reach beyond illness, to inspire children with serious medical conditions to become their greater selves. Our mission is to provide a year-round life-changing environment for these children and their families-- one that allows children to participate in an authentic camp experience by supporting their medical needs and offers their families care, education, and respite."</i><br /><br />I know I mentioned the camp in a previous post (<a href="http://glamourbymia.blogspot.com/2011/07/charity-it-makes-your-heart-smile.html">here</a>) & I am more than thrilled that they invited us to apply again this year! The timing of us receiving the application was perfect. I know that Mailyna was feeling super run down because of Friday & this completely lifted her spirits at the thought of attending camp again! I gave her the "we'll see" since we actually have to apply for the camp since its a free program.</div>
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It's absolutely amazing what the camp does for the children. Each session is broken up by illness & Mailyna came home with stories, memories & new friends from those 5 days at Lake Hughes. She was afraid to meet new friends, but did seem to take comfort in knowing that they were all "like her". Honestly, its a blessing that there are programs out there that reach out to children & families with illnesses. Sure, Mailyna has gone camping countless times, but going to a camp is so different. Thankfully the time frame is a lot more accommodating this year. Last year, I remember it was a pain getting here there on a Thursday morning & picking up on a Tuesday... So I was excited to see that it starts on a Monday & ends on the weekend! Its not like its a quick drop off up the street, Lake Hughes is a 5 hour drive away! As my sister, the drive was craaaazy! Here's to another SoCal trip... Disneyland for the 5th time in 2 years maybe? </div>
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<b><i><br />xo, Mailyna's Mama</i></b></div>
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<br /></div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-46796204030107905622012-01-20T20:12:00.000-08:002012-01-21T09:00:07.366-08:00Transfusion Day 1/20/12<div style="text-align: justify;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKrwEt24oK67ZMQ3Qz_Yqf2x-OaYBU1Pt_Hypu4ICm_QPg_q0yy8TrcV2QTkCRSYRWqTa8HOPXTLDW-etpnDuaGgngYnTnd9lqNxg78drqqfaY__q21nWA9dBJRZugB7tWEBY2kyzn-ZU/s640/blogger-image-965129549.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="399" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKrwEt24oK67ZMQ3Qz_Yqf2x-OaYBU1Pt_Hypu4ICm_QPg_q0yy8TrcV2QTkCRSYRWqTa8HOPXTLDW-etpnDuaGgngYnTnd9lqNxg78drqqfaY__q21nWA9dBJRZugB7tWEBY2kyzn-ZU/s400/blogger-image-965129549.jpg" width="400" /></a></div>Today is transfusion day. We started at 720 at the lab. With nearly no one in there, you'd think it would be easy breezy, but that's never the case. Apparently Mailyna had multiple labs that needed to be done & the receptionist struggled with trying to figure out which ones were actually needed. Come to find out, she needed all 15. That's right. 15 test tubes to be filled with blood. The tech counted out the vials 5 times to be sure. We didn't get out of there til 805.<br />
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</div><div style="text-align: justify;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_zmczPBhkfXk7dCH5dGirMjtHWOhsTmsPdoTxBssrkNYSc868EVZD_rR8yA_fyKO0Tbn-WIEehHpi5fgSetB-1y5LzvoclwErBrege_aS8Y8FERFcKlGIbI6u7CmYgDp4jSL-2DtFilc/s640/blogger-image--845372812.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_zmczPBhkfXk7dCH5dGirMjtHWOhsTmsPdoTxBssrkNYSc868EVZD_rR8yA_fyKO0Tbn-WIEehHpi5fgSetB-1y5LzvoclwErBrege_aS8Y8FERFcKlGIbI6u7CmYgDp4jSL-2DtFilc/s400/blogger-image--845372812.jpg" width="299" /></a>Sigh... So I started to blog when we got to Kaiser with the intent on documenting the day & letting Mailyna give her thoughts a chance to process all day...however it wasn't an easy day at all... Like I said, the bazillion test tubes was the first thing. When we checked in & got her port accessed, they weren't able to draw the blood out, but it still pushed the saline regularly. She did have a slight discomfort, so we hooked her up to the IV to see how she felt about the flow at the regular rate the blood would flow. It seemed ok, so we waited on the blood. As soon as they hooked her up, I could tell she wasn't comfy. A few minutes in, distraction tactics weren't working & I could see she was feeling more than just a little pain. By the time I grabbed someone, she looked like she was about to cry. The nurses decided to do a peripheral stick & try for her right hand. She was completely distraught that they were going to poke her for a 3rd time today. She fought furiously & screamed like crazy, but the got it in & switched the line. Still in tears, she insisted it was still hurting & when they checked it. The line that started out smooth, was now getting hard & puffy... Which basically meant she needed a different site to be poked, yet again. <br />
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</div><div style="text-align: justify;">By this time, you could only imagine how angry & frustrated Mailyna had become. She didn't want any of the lines removed, she didn't want to be poked again, she just wanted to go home. Tears were endless. I felt like I was in an episode of Greys Anatomy & was trying everything possible to calm her down. Talk down a distraught 9 year old? Riiiiight. Finally, they were able to get a good, clean site that was smooth flowing.</div><div style="text-align: justify;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilnbD4gkDSwTUYBNlhdL_VrGRLVwISMTj5IkIn-Hceg1D_QdJ8lnuMauAVM6Un-bvhFCdVT0DcK6nKXFviTET6PS1RzAhuDf1xa0Tc4rwuzxwP9ziVbEFcJ9e8fBcb2aqazRBjXGzveug/s640/blogger-image-1730706795.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilnbD4gkDSwTUYBNlhdL_VrGRLVwISMTj5IkIn-Hceg1D_QdJ8lnuMauAVM6Un-bvhFCdVT0DcK6nKXFviTET6PS1RzAhuDf1xa0Tc4rwuzxwP9ziVbEFcJ9e8fBcb2aqazRBjXGzveug/s400/blogger-image-1730706795.jpg" width="400" /></a>The staff at our Kaiser Pedi Hem/Onc are amazing. Imagine the pressure they're under having a screaming child & a stressed parent, watching their every move. I'm sure they're great with everyone, but I like to think they give us special treatment. A lot of the staff have been there with me from the beginning & I appreciate & respect all of them. Days like today aren't easy for any of us. The staff are part of our family & I know they want what is best for Mailyna at all times. They all felt horrible when she refused to talk or look at anyone after the 4th stick. In fact, a lovely beading set found its way into our room as a nice little bribe for a smile! <br />
<br />
</div><div style="text-align: justify;">What I expect to be an easy day of appointments just like the rest turned into a nightmare. What it comes down to, is that her port is no longer working. We've had issues with it the last 3 transfusions, but today was the worst so far. We had the port put in right before her 1st birthday, which would mean this sucker has lasted well beyond the expectancy. I remember they originally said it would last roughly 3-5 years... its been almost 9. We've been fortunate that she's had that option, because today, with the struggle to access her, brought back memories from that first year of her life where we had to hold down our little perfect baby while nurses & doctors poked her endlessly.<br />
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</div><div style="text-align: justify;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl8h6qgpHT-mqKvbeaOVusQWTnCVkDI7-TEbOhr2Lft6b8gHzyPSUmrpcc9Z9Gctwtr13zbC6MGrqjBx3ylNLvzMG_I711tPfnzKCzq31P79E7x5H7wPynL56P1bl_-pD5ndcbv4cNgGc/s640/blogger-image--346285996.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl8h6qgpHT-mqKvbeaOVusQWTnCVkDI7-TEbOhr2Lft6b8gHzyPSUmrpcc9Z9Gctwtr13zbC6MGrqjBx3ylNLvzMG_I711tPfnzKCzq31P79E7x5H7wPynL56P1bl_-pD5ndcbv4cNgGc/s640/blogger-image--346285996.jpg" /></a></div>At this point, we have 2 options. The first is remove her existing port & replace it with a new one. We'd still have to worry about her playing any "contact" sports or activities, fevers over 101.5, risk of infections & all that good stuff I've had to be cautious about for the past 9 years. Option 2 is to remove the port & finally let go of all those limitations, but all of her transfusions would be done through peripheral sticks. The downside is the veins will take a beating & she may eventually need a port put in anyway. Its a decision that she gets a say in & it matters a lot that she gets that chance to decide. <br />
<br />
</div><div style="text-align: justify;">We ended up missing 2 appointments, but luckily all of the doctors work so closely, they fit us in at the end of the day. We didn't leave Kaiser Oakland until 430. That's right, 720-430. Regardless, my child is a super trooper. She ended the day with a smile, sassy as ever . Stay on the look-out for a recount of today by the lil miss herself!<br />
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Thank you again to all of my family & friends that have reached out & left comments & sent up prayers for us. It was hard to keep it together, but the strength & support you've shared has helped both of us make it through this rough patch!<br />
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~Mia</div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com1tag:blogger.com,1999:blog-4119654424051873313.post-86320767164324541582012-01-12T14:38:00.000-08:002012-01-13T00:20:49.097-08:00The Mind of a 9 Year Old<div style="text-align: justify;">Hi everyone! I asked Mailyna to blog about a tough topic for her. I asked her to write about how she thought other people felt about her beta thal or how they would react to finding out. She didnt write much this time because her mind was jumping from topic to topic, but what she came up with is below. <br />
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<i>"I have a condition called Beta Thalassemia. Sometimes its hard to tell other people about my condition. Sometimes I think that other people might think of me differently then other kids. I think my friends wouldn't be my friends if I told them about my Beta Thalassemia. Sometimes when I think of that I cry, but then I think of happy things. Just like when I went to Knott's Berry Farm in L.A. with my dad and my sister. Also when I'm sad I look at my favorite pictures I took before when I was little like my baby sister who is 3 years old. To me I think that with my Beta Thalassemia I can't do so much things like soccer, karate, football, and volleyball." </i><br />
<i>- Mailyna</i><br />
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The heartbreaking thing is that we try to keep her activities as normal as possible & but there are limitations. She has a port-o-cath in her chest that does need to be protected, because its connected to one of her main arteries. I've never tried to hide her blood disorder from anyone & freely open up about her condition to anyone who inquires because its something that is a part of her life & ours. Everyone that we've ever spoken to has been supportive & loving, which is a complete blessing!<br />
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Shes a strong kid & deep down shes got all these insecurities. And to be honest, the odds are stacked. She's a 9 yr old girl, that has divorced parents, and has a genetic disorder. Every aspect adds separate difficulties. She isn't the average kid... she's better! She has at least 4 different Christmases to look forward to... 2 sets of parents, 4 grandparents, a gazillion other family members to cheer her on in whatever she does! Life is full of ups & downs, but Mailyna is truly blessed to have the support system she does & to be living in a time and place where she is able to receive the proper care to manage & maintain her life. <br />
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Lets give her some reassurance & encouragement folks! Please feel free to subscribe to her blog & leave tons of comments! Thank you again for the support!<br />
<br />
~Mia</div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com1tag:blogger.com,1999:blog-4119654424051873313.post-23164442122945084672011-11-17T20:59:00.001-08:002011-11-17T22:02:42.652-08:00Some Days are Harder than OthersYesterday was my transfusion. My mama took me, instead of my mom. Wile I was there I had a fun time with her. The first thing we did was get my height and weight. Once they do that they got all that done I get to the room they want me in. When I get settled in, the doctors get their things ready, before they poke my port. Yesterday they didn't have to poke me one time, but two times! They needed to poke me two times because my blood was clogged. Nobody knew what it was clogged from. When they poked me the second time I started to cry. I started to cry because my port wasn't numb anymore. It really hurt. The second thing they do is go and get my blood at the Blood Bank. That reminds me when my Auntie Chris donated blood and helped someone like me. Once they do that they get the end from the needle and connect the other line to mine. The other line has the blood in it. In the end of my transfusion I pack my things and go home.<br />
By,<br />
MailynaMsmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com3tag:blogger.com,1999:blog-4119654424051873313.post-27103871000375630942011-11-09T22:13:00.000-08:002011-11-09T22:16:27.481-08:00Getting Ready for Transfusions (Mailynas Version)For my transfusion is not easy some times. Before I go to my transfusion I need to get my blood drawn. At my transfusion I take my height,weigh myself, and stay there for about 5 hour. Wile I'm there I have a bag filled with goodies. In my bag I like to bring movies, books, homework, beads, and my emla. I wear emla so that when they poke me in my port, it wont hurt so much. While I'm at my transfusion, I start to miss school and my friends. I start to think of what they are doing and how much fun they are having. But on the other hand I am looking forward to seeing all my doctors there. My favorite thing to do there is doing crafts with Gina. Gina is a child life advocate/supporter. She is a very nice person to spend time with. Another person to spend with is Stacey. Me and her both made up a hand shake together. This is how it goes; elbow elbow ,wrist wrist, touch your pearls, blow a kiss. When ever I go in room 1 she a and I do the hand shake in the air. After my transfusion me, my sister and my pop or mom go to Fentons for ice cream. <br />
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By Mailyna</div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com2tag:blogger.com,1999:blog-4119654424051873313.post-17227558670790432362011-11-09T21:12:00.000-08:002011-11-10T21:03:03.280-08:00Staying Healthy as a Hippo<div style="text-align: justify;">
A lot of times, when people find out about Mailyna's condition, one of their first reactions is "but she looks so healthy; I'd never be able to tell..." and its absolutely true. We have a medical team that we work closely with, that has become an extension of our family. We're a part of the Pedi Hem/Onc Clinic at Kaiser in Oakland, CA. They've literally been a part of my life since 2002. Because my family is a huge support system for me, we all pitch in & alternate who takes Mailyna in every 3 weeks. Sometimes its my mom, or my dad, sometimes I'll take her, sometimes her pop will take her... but the amazing thing, the staff at Kaiser KNOWS my family. They ask about her extracurricular activities, they ask about my parents, about Mailynas sister... they just know. This has become on of the most valuable relationships we've built.<br />
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<div style="text-align: justify;">
Mailyna is 9. She has been going into the Oakland Pedi Hem/Onc for her transfusions since she was 6 months. We actually started off going in every 5 weeks back then, but as she got older, the doctors realized it was more beneficial to have her come in every 3 weeks, giving her less blood, more frequently. It kept her stronger, longer. Looking back now, I have no idea how we were able to keep her hooked up for hours on end when she was a squirmy wormy baby wanting to crawl; or as a toddler when she learned how to walk & run. When we bring my younger daughter along with us for transfusions, shes ALL OVER the place!! </div>
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<div style="text-align: justify;">
We have a routine. Mailyna has her "transfusion bag" that she packs up & fills with whatever we need for the next day. Movies, books, snacks, her blankey & baby (well, no baby now since shes almost outgrowing that stage). In addition, inside is her Emla Cream to numb the port-site for easy, no tears access & her tegaderm tape. That way its all together & ready to go for the day. Also inside, are her beads.<br />
<br />
Generally, her transfusions would take all day. From 9am until about 4, we were there. To minimize the time there, we take her in for blood draws up to 48 hours earlier, which is a peripheral stick in her arm, that isn't numbed with anything. You can imagine how THAT goes! But it cuts our time there down to about 5 hours instead. Its a long day, but absolutely necessary. The preventative & proactive measures we take keep Mailyna her healthy self. <br />
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Its an absolute blessing that we are in an area of the world that has such amazing care. Many countries that are known for Beta Thal don't have the same advantages. I just pray that the advancements in healthcare continue to grow & thrive, so that my little monkey will stay as healthy as a hippo!<br />
<br />
-Mia</div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com1tag:blogger.com,1999:blog-4119654424051873313.post-52451829404635195472011-10-28T12:39:00.000-07:002011-10-28T12:39:18.935-07:00Insight on My World<h3 class="post-title entry-title" style="font-family: Verdana,sans-serif; text-align: justify;"><span style="font-size: small;"><span style="font-weight: normal;">This is a re-up of something I posted on my other blog, but it seemed fitting to move it over to share here also. </span></span></h3><h3 class="post-title entry-title" style="font-family: Verdana,sans-serif; text-align: justify;"><span style="font-size: small;"><span style="font-weight: normal;">____________________________ </span><br />
</span></h3><span style="font-family: Verdana,sans-serif; font-size: small;"> </span><div class="post-header" style="font-family: Verdana,sans-serif; text-align: justify;"> </div><span style="font-family: Verdana,sans-serif; font-size: small;"> </span> <div style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;">I happen to be "reminiscing" about the good ol' days with my pal & decided to peruse my old myspace account (that I havent touched in well over a year!) & came across the blog post I did back in 2007 when Mailyna was granted "her wish" to go to Disney World her kindergarten year. It made me remember her kindergarten year today when I ran into another parent at the "ice cream social" at Mailyna's school & we chatted about our kids being in the same classroom this year & remembering when they were little kinderbabies. So heres the article that from 2007, that ran my baby on the front page of the Daily Review.</span></div><div style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;">______________________________</span></div><div style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;"><br />
</span> </div><div style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;">Straight off Myspace:</span></div><div style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;"><br />
</span> </div><div style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;">Below is the article ran in Sept 8th's Daily Review about Mailyna. Make a Wish is real & does great things for kids who truely deserve a little bit of sunshine in their lives. I'll be forever greatful that my daughter was giving such a wonderful opportunity...</span></div><div style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;"><strong style="border-width: 0px; font-style: inherit; font-weight: bold; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="border-width: 0px; font-style: inherit; font-weight: inherit; line-height: 16px; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><br />
</span></strong><br />
<strong style="border-width: 0px; font-style: inherit; font-weight: bold; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="border-width: 0px; font-style: inherit; font-weight: inherit; line-height: 16px; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;">WISH COMES TRUE</span></strong></span> </div><br />
<span style="font-family: Verdana,sans-serif; font-size: small;"> </span><div class="articleTitle" style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;">Fairview girl gets trip to Disney</span></div><div class="articleSubTitle" style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;">Foundation provides vacation for 4-year-old suffering from disease</span></div><div class="articleByline" style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;">By Karen Holzmeister, STAFF WRITER</span></div><br />
<span style="font-family: Verdana,sans-serif; font-size: small;"> </span><div class="articleDate" style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;">Article Last Updated: 09/08/2007 09:28:16 AM PDT</span></div><div style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><a href="http://img208.imageshack.us/img208/3168/mimsarticletr4.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://img208.imageshack.us/img208/3168/mimsarticletr4.jpg" style="border-width: 0px; font-style: inherit; font-weight: inherit; margin-top: 0px; max-width: 100%; outline-width: 0px; padding: 0px; vertical-align: baseline;" /></a><span style="font-size: small;"><br />
Almia Armas and her daughter Mailyna Mayate, 4, in their Hayward home Thurs. Sept. 6, 2006, are going to Walt Disney World in Florida with the help of Make A Wish foundation. Mailyna suffers from a life-threatening blood disease.</span></div><div class="articleBody" style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;"><br />
</span> </div><div class="articleBody" style="border-width: 0px; font-family: Verdana,sans-serif; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; text-align: justify; vertical-align: baseline;"><span style="font-size: small;">FAIRVIEW — Mailyna Mayate resembles a little princess in her pink-spangled gown, rhinestone tiara and wand sparkling with pixie dust.</span> <div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">The 4-year-old feels like one, too.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;"> </span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">In late August, she started kindergarten at Stanton Elementary School in Castro Valley. On Sept. 16, she turns 5. And, she was asked Thursday, "Mailyna, what are you doing Saturday?"</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">"I'm going to Disney World," she said, giggling before collapsing in a fluffy heap to work on Cinderella and Little Mermaid puzzles.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">Yes, at 11 a.m. today, a lim-ousine is taking Mailyna, her mother and her grandmother to San Francisco International Airport.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">They'll fly to Florida and stay five nights at "Give Kids the World" Village, a resort in Kissimmee, where Mailyna will eat at the Gingerbread House. They'll also have passes to four Disney theme parks, Universal Studios and Sea World in neighboring Orlando.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">A special trip for a special little girl?</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">Yes, and the fulfillment of a special wish by the Greater Bay Area Make-A-Wish Foundation for a child who has undergone more physical turmoil in her short life than many adults.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">Mailyna suffers from thalassemia, a life-threatening blood disease. Her body cannot produce red blood cells.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">She has had blood transfusions every five weeks since she was 6 months old. Just before her first birthday, a port — or small reservoir — was implanted in her chest for the transfusions. It lasts five to seven years before a replacement is necessary.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">If her body temperature exceeds 101.5 degrees, Mailyna is hospitalized for three days for antibiotic therapy. She has liver biopsies yearly. She's currently not a candidate for a bone marrow transplant, which could introduce blood-forming cells into her body.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">In addition, Mailyna takes medication every day to reduce the effects of iron overloads on her body caused by the transfusions. The oral medicine is a blessing, said Mailyna's mother, Almia Armas.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">Until a year ago, Armas had to prick Mailyna's arms or legs with a syringe at bedtime, so that medication could pump through her daughter's body overnight. The child's limbs grew hard and callused, and it hurt her to walk.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">Now, looking at affectionate, effervescent Mailyna, you would never know she is anything but a normal child.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">"She is normal," Armas insisted. "She plays, swims and dances Tahitian dances. She loves to go camping and to the snow, to work on the computer and to take pictures with my camera."</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">In part, Mailyna accepts her illness "because she knows nothing else," explained her grandmother, Eileen Armas.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">Love and diligence account for Mailyna's quality of life.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">She lives with her mother, grandparents, aunt and uncle near Don Castro Regional Recreation Area. Mailyna's father is not involved in her life, Almia Armas said.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">The family has good medical coverage, in part due to Armas's employment and insurance plan at Kaiser Medical Center in Oakland, where Mailyna is treated in the pediatric hematology department.</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">"I wouldn't trade my life for anything else," Almia Armas, 25, said as Mailyna cried "Mommy!" and leaped into her arms. "She's my world."</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">And, for five days, Mailyna's world will be one of princesses and heroines whose names she reels off affectionately and quickly:</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">"Aurora (Mailyna's middle name). Cinderella. Sleeping Beauty. Snow White. Ariel. Belle. The Little Mermaid."</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;"><br />
</span> </div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">_____</span></div><div style="border-width: 0px; font-style: inherit; font-weight: inherit; margin: 0px; outline-width: 0px; padding: 0px; vertical-align: baseline;"><span style="font-size: small;">Personal Disclaimer: I am sorry that in the paper they printed my statement that her father is not involved... while he is not a constant in her life or actively involved the way my family friends & loves ones are, he does see her occassionally & I have no doubt that he loves Mailyna very much, so I am sorry that everyone who has read it will perceive him in that light, regardless of whether or not the statement is true. So to her dad, I'm sorry.</span></div></div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-46471406383994184252011-10-27T19:25:00.000-07:002011-10-27T19:25:32.692-07:00So, What is Beta Thalassemia Anyway?<div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Thalassemia is the name of a group of genetic blood disorders. There are 2 types, Alpha & Beta Thalassemia. Rather than provide a heavy description of both, I'll provide a quick breakdown on Beta, since that is what my experience focuses on. Please check out <a href="http://www.thalassemia.org/index.php?option=com_content&view=article&id=19&Itemid=27">Cooleys Anemia</a> on a full description. The following excerpt has been copied directly from their site.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">"<span class="Apple-style-span" style="font-size: 13px;">People whose hemoglobin does not produce enough beta protein have </span><span class="Apple-style-span" style="font-size: 13px;"><b>beta </b></span><span class="Apple-style-span" style="font-size: 13px;"><b>thalassemia</b>. It is found in people of Mediterranean descent, such as Italians and </span><span class="Apple-style-span" style="font-size: 13px;">Greeks, and is also found in the Arabian Peninsula, Iran, Africa, Southeast Asia and </span><span class="Apple-style-span" style="font-size: 13px;">southern China.</span></span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">There are three types of beta thalassemia that also range from mild to severe in their effect on the body.</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></i></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Thalassemia Minor </i>or <i>Thalassemia Trait</i>. In this condition, the lack of beta protein is not great enough to cause problems in the normal functioning of the hemoglobin. A person with this condition simply carries the genetic <b>trait </b>for thalassemia and will usually experience no health problems other than a possible mild anemia. As in mild alpha thalassemia, physicians often mistake the small red blood cells of the person with beta thalassemia minor as a sign of iron-deficiency anemia and incorrectly prescribe iron supplements.</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Thalassemia Intermedia</i>. In this condition the lack of beta protein in the hemoglobin is great enough to cause a moderately severe anemia and significant health problems, including bone deformities and enlargement of the spleen. However, there is a wide range in the clinical severity of this condition, and the borderline between thalassemia intermedia and the most severe form, thalassemia major, can be confusing. The deciding factor seems to be the amount of blood transfusions required by the patient. The more dependent the patient is on blood transfusions, the more likely he or she is to be classified as thalassemia major. Generally speaking, patients with thalassemia intermedia need blood transfusions to improve their quality of life, but not in order to survive.</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Thalassemia Major </i>or <i>Cooley's Anemia</i>. This is the most severe form of beta thalassemia in which the complete lack of beta protein in the hemoglobin causes a life-threatening anemia that requires regular blood transfusions and extensive ongoing medical care. These extensive, lifelong blood transfusions lead to iron-overload which must be treated with chelation therapy to prevent early death from organ failure.</span></div><div style="font: 13.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="font-size: small;"></span></span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><b><i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Treatment of Thalassemia</span></i></b></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><b><i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Blood Transfusions</span></i></b></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The most common treatment for all major forms of thalassemia is <b>red </b><b>blood cell transfusions</b>. These transfusions are necessary to provide the patient with a temporary supply of healthy red blood cells with normal hemoglobin capable of carrying the oxygen that the patient's body needs.</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">While thalassemia patients were given infrequent transfusions in the past, clinical research led to a more frequent program of regular blood cell transfusions that has greatly improved the patients' quality of life.</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Today, most patients with a major form of thalassemia receive red blood cell transfusions every two to three weeks, amounting to as much as 52 pints of blood a year.</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><b><i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Iron Overload</span></i></b></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Because there is no natural way for the body to eliminate iron, the iron in the transfused blood cells builds up in a condition known as "iron overload" and becomes toxic to tissues and organs, particularly the liver and heart. Iron overload typically results in the patient's early death from organ failure.</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><b><i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Chelation Therapy</span></i></b></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">To help remove excess iron, patients undergo "iron chelation therapy," in which a drug is introduce dinto the body which binds with excess iron and removes it through the urine or stool. For many years, the only FDA approved iron chelator was <span style="color: #2800f9;"><b>Desferal</b></span>, which has to be administered through a painful and difficult infusion process. When using Desferal, a needle is attached to a small battery-operated infusion pump and worn under the skin of the stomach or legs five to seven times a week for up to twelve hours.</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In November 2005, the FDA approved an oral chelator, Exjade. This is a pill which is dissolved in water or juice and drunk, once a day. Many patients now have an option in terms of chelators, and it is hoped that more options will become available in the coming years.</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"></div><div style="font: 13.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><b><i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The Compliance Problem</span></i></b></div><div style="font: 13.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="color: #2800f9;">Compliance </span>with chelation therapy is vital to the thalassemia patient's long term survival. However, many</span></div><div style="font: 13.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">patients find the administration of Desferal so difficult that they do not keep up with it or abandon treatment</span></div><div style="font: 13.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">altogether. If they do not have access to another chelating option, this is extremely dangerous. Lack of</span></div><div style="font: 13.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">compliance with chelation therapy leads to accelerated health problems and early death."</span></div><div style="font: 13.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><div style="font: 13.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div><br />
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<div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: small;">So, how does someone end up with Beta Thal Major? Basically like this:</span></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: small;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/_S2oqkOpd4Vs/SggnJASJX0I/AAAAAAAABmA/BcNJ3ixOMjI/b183942897%5B3%5D.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/_S2oqkOpd4Vs/SggnJASJX0I/AAAAAAAABmA/BcNJ3ixOMjI/b183942897%5B3%5D.jpg" width="273" /></a></div><div style="font: normal normal normal 13px/normal Times; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: small;"><br />
</span></div>Msmia510http://www.blogger.com/profile/02861714529891978929noreply@blogger.com0tag:blogger.com,1999:blog-4119654424051873313.post-63424816103290917112011-10-27T19:06:00.000-07:002011-10-27T19:07:18.051-07:00From the Beginning<br />
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<a href="https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-snc6/265107_2081535911522_1038798578_2455130_783862_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-snc6/265107_2081535911522_1038798578_2455130_783862_n.jpg" width="320" /></a></div>
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The story of our life has been a hectic one. I wish I had begun blogging our
experiences from the beginning, especially since I have yet to find any parents
or families that have shared their own.
My hope is that I can create a story of Mailynas life that she can look
back on to see & remember her great journey. I also want to share our experience with parents who find
themselves in our position & are looking for real life experience, rather
than what doctors tell them about others.
Talking about her struggle is something that causes 3 major things for
me. The 1<sup>st</sup> is strength
to push on & be the support system for Mailyna. The 2<sup>nd</sup> is pain at remembering how tough my baby
has to be, every single day. The 3<sup>rd</sup> is
vulnerability. A lot of times, I
can talk freely about our life in the most matter of fact way that some people
don’t understand. But for me, it’s
a coping mechanism. Its our
life. It’s the only thing that
keeps me from bursting into tears.
The beginning of our story is a tough one for me & causes tears to
well up, but here it is…</div>
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I found myself 19 & pregnant. My longtime high school sweetheart & I were already
living together & just “knew” we wanted to spend our lives together. The pregnancy was unexpected, but
welcomed with open arms. I had
horrible morning (ALL DAY really)
sickness the first 3 months that dropped my weight drastically; celebrated my
20<sup>th</sup> birthday; dealt with my great grandmother passing within days
of my prepping to announce my news... but the kicker… a simple routine blood draw that
showed something called the “beta trait”, which would change my life forever.</div>
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The trait isn’t really a big deal & doesn’t majorly affect
the carrier. In some instances,
people could go about their whole lives with the trait & never know about
it… unless they decide to have
children. My then husband had to
go for a blood test, only to find out that he too, was a carrier and they immediately sent us for genetic
counseling. We found ourselves
driving all over the Bay Area to meet with this specialist & going for
screenings & tests. Ultimately
I underwent an amniocentesis as soon as my doctors gave me the green light,
roughly 4 months, so we could find out whether our baby would show any
repercussions of its trait parents.
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Through out our genetic counseling, we were given odds. There was a 25% chance that the baby
would get both good genes & not inherit the trait at all. There was a 50% chance that the baby
would get the trait (one good from me, one bad from him & vice versa). Then there was a 25% chance that we
would both pass on the beta trait, resulting in the full disorder, Beta
Thalassemia Major. Its definitely
a scary thought, but the odds (75%
vs 25% ) were in our
favor. I actually found an online
article that sums it up exactly <a href="http://www.memorylogix.com/having-a-baby-for-thalassemia-couple-is-like-buying-lottery.html">here</a>.</div>
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<a href="http://www.stjude.org/Images/hosp-hem-beta04-0902.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.stjude.org/Images/hosp-hem-beta04-0902.jpg" /></a></div>
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Test results took 2-4 weeks or so. All the while, this little girl was growing inside of
me. I was in my 5<sup>th</sup>
month watching tv after work when I received the call that the baby inherited
both traits. I remember sobbing,
alone in my apartment for hours.
We were called into the genetic counseling office again to discuss the
outcome. Turns out that not only
does she have the blood disorder, it’s a rare form that meant she wouldn’t be
able to make any red blood cells.
She would need regular blood transfusions and chelation therapy because
of the iron overload. It was a
whirlwind of information thrown at my highly emotional, pregnant mind. I dove head first into the internet to
research everything I could find, as we met with the specialist & clinics
here in the Bay that cared for the Beta Thal community.</div>
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Although we were given the option, we decided to continue
the pregnancy. This angel was
growing inside of me & I loved her with all my heart. We had a game plan for our little girl
& after a full 12 hours of labor, a healthy baby girl, Mailyna Aurora entered
my world & changed my life forever.</div>
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