An Arizona Transplant Family is Celebrating National Minority Donor Awareness Week:
Please Register to be a Life-Saving Organ or Tissue Donor
August 1, 2019 -- August 1st - 7th is recognized as National Minority Donor Awareness Week, which was created in 1998 to increase our nation’s consciousness of the need for more organ and tissue donors -- especially among multicultural communities. National Minority Donor Awareness Week honors communities of color who have been donors, and encourages others to register as donors. It is about empowering multicultural communities to save and heal lives by registering as organ and tissue donors.
As of August 2018, 58% of the individuals waiting on a life-saving transplant in the United States are multicultural patients. Hispanics represent nearly 20% of the patients on the national transplant waiting list. In 2016, nearly 13% of U.S. organ donors were Hispanic. Although organs are not matched according to ethnicity, and people of different races frequently match one another, individuals waiting for an organ and/or tissue transplant will have a better chance of receiving one if there are large numbers of donors from their ethnic background. This is because compatible blood types and tissue markers (which are critical qualities for donor/recipient matching) are more likely to be found among members of the same ethnicity.
COTA’s Soto-Velasco family of Bellemont, Arizona, knows these challenges all too well.
Manuel and Dulce Soto were excited to find out they were pregnant with twins. Their family already included sons Francisco Manuel and Diego Jonathan, and a daughter, Gael Leobardo. Their twins, Itzel and Perla, were born in March 2015 perfectly rounding out their family of five children. However when the twins were only a year old, Manuel remembers the day their world was rocked in a frightening way when they heard the news that Itzel might have cancer. Dulce remembers, “Our family’s transplant journey started the minute Itzel had her second biopsy due to a bump we found between her right temple and her eyebrow. The preliminary test results showed abnormal cells. We were so scared, especially when we were told our baby girl would need to be admitted to the hospital for several days for more testing to be done.”
On March 10, 2016, Dulce and Manuel received the devastating news that Itzel was diagnosed with a deadly cancer called neuroblastoma Stage 4, which is a malignant tumor that starts in the nerve cells and then quickly spreads. Her twin, Perla, was cancer free as were the older three children – which was just the start of many questions they would have regarding Itzel’s diagnosis and transplant journey. Itzel was kept inpatient for about three weeks during which time she had a port implanted and began receiving chemotherapy. Following that initial dose of chemo, Dulce and Itzel had to return to Phoenix Children’s Hospital every three weeks for the baby to receive additional chemotherapy. Each chemo treatment required Itzel to remain inpatient for a week, with either Dulce or Manuel at her side while the other parent was at home with their other children.
For numerous reasons, including the possible lack of a bone marrow match in the registry, it was determined Itzel would receive an autologous bone marrow transplant. Some of Itzel’s stem cells had to be removed before she was given high doses of chemotherapy. Her stem cells were stored in a freezer and after the baby’s chemotherapy treatments, the stem cells were put back into her body with the hope that normal blood cells would then be made.
Dulce and Manuel were told Itzel’s transplant team would need to collect her cells that would be used for the autologous transplant between the second and third chemotherapy treatments. Another procedure would need to be done with her cells between the fifth and sixth chemotherapy treatments as well. There was also a possibility her doctors would remove some of the tumors they had found on Itzel’s temple, adrenal gland, lymph glands and pelvis.
The treatments, the trips, the overnight stays plus many more transplant-related expenses were quickly mounting for this family. A transplant financial coordinator at Phoenix Children’s Hospital met with Dulce and Manuel and suggested they reach out to the Children’s Organ Transplant Association (COTA) to investigate the possibility of fundraising for the growing transplant-related expenses. In early August 2016 Dulce called COTA’s 800 number.
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. On September 12, 2016, Dulce and Manuel officially became part of the COTA Family, and a COTA fundraising specialist travelled to their Arizona hometown to train the volunteers for the COTA campaign in honor of Itzel S. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
Itzel received her bone marrow transplant, and her second chance at life, on September 14, 2016. “The day of Itzel’s transplant came and it was the most difficult time of the journey because she got so sick and had some life-threatening complications as well,” Dulce said. “Her pic lines were infected and she struggled with several viral infections that we were told could kill her if not treated immediately. We sat at her inpatient bedside for close to two months waiting and praying the transplant would work and she would be able to survive it all.”
When Itzel was finally released from being an inpatient, the family relocated to transplant housing close to Phoenix Children’s. They stayed in the Ronald McDonald House for another month and a half during which time Itzel endured 12 rounds of radiation therapy. Tiny Itzel had to be put to sleep with anesthesia every day that she received radiation. Her transplant team of specialists finally decided she was doing well enough that the family could return to their Bellemont home, but Itzel would still need to undergo another five rounds of oral chemotherapy to finish the first phase of her treatment plan and to make sure everything possible was being done to maximize the success of her bone marrow transplant.
In May 2017 Itzel was finally done with all of her initial transplant-related procedures and her doctors removed her port. It was indeed a day of celebration for Itzel’s family.
When Dulce thinks back to the scary days of being inpatient with her little girl, she tearfully remembers how many of their friends and family members were back home praying, helping with their other children and working with COTA to raise funds for the mounting transplant-related expenses.
“The Children’s Organ Transplant Association (COTA) provided so much hope to us by simply being by our side during some very dark days. COTA assisted us with transplant-related expenses and every person at COTA was very patient with us since this was all new. COTA emailed and called us to check on Itzel and on the rest of our family. COTA checked in with our volunteers to make sure they had everything they needed. COTA allowed us to focus on Itzel and her recovery. The biggest gift COTA gave us was helping us to see we were not alone; COTA will be part of our family’s journey … for a lifetime,” Dulce said.
Dulce describes Itzel’s transplant journey in one word -- intense. However Dulce is happy to share that Itzel is currently in remission and “clean of cancer.” They must return to Phoenix Children’s for periodic scans and tests, but those trips are not as stressful because they know they are returning home when they are completed.
Today Itzel loves playing with her twin sister and doing things other normal kids are doing. Itzel is a big fan of putting stickers everywhere, going to the park, playing in the dirt and when inside playing with her kid-sized kitchen. Itzel being a ‘normal’ kid is something that Dulce and Manuel celebrate every day when they see her smile and hear her infectious laughter.
August 1st – 7th is National Minority Donor Awareness Week. Many COTA families are waiting for their children and young adults to be matched to an organ or tissue donor. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor. Every day 22 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives.
For more information about the Children’s Organ Transplant Association (COTA),
or to find a COTA family in your area, please email kim@cota.org.
COTA Kid Itzel Soto-Velasco
Bone Marrow Transplant Recipient
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Children's Organ Transplant Association, 2501 W Cota Dr, Bloomington, IN 47403 United States
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Layton Hills Mall has selected its 5th Annual KIDZ BIZ participants!
More than 20 new participating businesses.
Layton, UT (August 1, 2019) Layton Hills Mall has selected over 35 businesses and 90 youth participants to take part in the 5th Annual KIDZ BIZ event. KIDZ BIZ is a program that encourage young entrepreneurs between the ages of 6 and 17 to learn about business practices, sales, and financial responsibility while running their own company for one day in the Layton Hills Mall. In addition, prizes are awarded for various categories and participants keep all the money they earn to invest back into their business venture.
“Seeing the number of applicants grow every year, and the new ideas these kids bring to the table is just amazing.” says Danielle Bendinelli, Layton Hills Mall Marketing Director. “KIDZ BIZ businesses must have minimal to no parental involvement, so the best part is the youth are the creative force behind their own concepts. From handmade art and craft items to educational hobbies or even designing original board games, the program offers an outlet to a wide variety of interests.”
The KIDZ BIZ market day will be held Saturday, August 17, 2019 from 12p to 5p on the lower level. This is the perfect time for children to test out their concepts, sales skills and see if their business model will work. The event will conclude with an awards ceremony at 5:30pm.
The KIDZ BIZ market day is open to all ages and the public is encouraged to attend and shop to show support for these young, local entrepreneurs. A big thanks to the following community partners: America First Credit Union, Davis Hospital and Medical Center, Ed Kenley Ford, my529.org, SeaQuest Utah, Silly Rabbit Shirts, Weber State University, Davis Education Foundation, FanX Salt Lake Comic Convention, On Pitch Performing Arts, Dartside and Nurture the Creative Mind.
Additional Event Information
http://www.shoplaytonhills.com/event/bltac36ba5943452713
Facebook Events Page
https://www.facebook.com/events/471420166750888/
About Layton Hills Mall:
Layton Hills Mall is owned and managed by CBL & Associates Properties, Inc. of Chattanooga, Tennessee, (NYSE:CBL). Layton Hills Mall features more than 100 great specialty shops and is anchored by Dillard’s JCPenney, SeaQuest Utah and Dick’s Sporting Goods. Additional information can be found at ShopLaytonHills.com.
Dear Editor:
Please consider this illuminating piece by veteran journalist Robert Koehler on racism, Trump's overt racism, American history, and our current challenge to overcome racism. For PeaceVoice, thank you,
Tom Hastings
~~~~~~~~~~
The inner Nixon
By Robert C. Koehler
872 words
The Nixon tapes are still in the news! My God, they’re still spewing bile, still making America’s eyeballs roll.
They’re as relevant as ever.
Donald Trump, it turns out, is merely the inner Richard Nixon, live and uncensored. He’s also the inner Ronald Reagan — the inner voice, suddenly made public, of every white male racist who has ever occupied the Oval Office (which is probably most of the occupants).
In an article that just came out in The Atlantic, Tim Naftali, history professor and first director of the Richard Nixon Presidential Library and Museum, shared a fragment of a telephone conversation between Nixon and Reagan from October 1971, in response to a vote the previous day in the United Nations that recognized the People’s Republic of China as, well . . . China.
Reagan, then governor of California, was in a stew of fury over the vote, as was Nixon. And both of them ascribed particular blame to the African nations, spurred by the fact that Tanzanian delegates actually started dancing in the General Assembly after the vote.
“Last night, I tell you,” Reagan said, “to watch that thing on television as I did.”
“Yeah,” said Nixon.
Reagan continued: “To see those, those monkeys from those African countries — damn them, they’re still uncomfortable wearing shoes.”
Nixon began laughing.
God bless America. What’s on display is the spiritual laziness of incredibly powerful men. Is it even shocking? Not really. The relevance of this minute or so of American history, suddenly in the public spotlight after almost four decades, isn’t that it allows us to single out the two former presidents as racists, shake our fingers at them and move on. Rather, it forces us to pause and examine the nature of racism itself in the post-civil-rights era and ask: How does it still manifest as public policy?
What has become obvious in the age of Trump is that this country has not transcended racism and moved on. America remains as much a paradox-in-progress as it was in 1776, when slave-owner Thomas Jefferson penned the phrase “all men are created equal.” The national soul still regards itself as white; the nation is still wedded to a racially based sense of moral superiority. This was once overt and unquestioned.
For instance, a dozen U.S. presidents have owned slaves, eight of them while they were in office. Many if not all of them possessed an absolute certainty that slavery was morally legitimate. Andrew Jackson, who owned about 150 slaves, once, many years before he became president, advertised that he would pay $50 for the return of a runaway slave and $10 extra “for every hundred lashes any person will give him, to the amount of 300,” as Russell Contreras notes in a recent AP story. Jackson, of course, was the president who signed the Indian Removal Act in 1830 and got the Trail of Tears underway, throwing tens of thousands of Native Americans off their homeland and, of course, costing many thousands their lives.
After the days of slavery, American racism had to take different forms. Contreras writes, for instance: “The Virginia-born Woodrow Wilson worked to keep blacks out of Princeton University while serving as that school’s president. When he became president of the U.S., the Democrat refused to reverse the segregation of civil service, though he had won the White House with the support of some African American men.”
The civil rights movement created another serious consciousness and policy shift, with racism slowly taking a moral nosedive, to the despair and anger of its many true believers. By 1971, you could say, the U.S. had learned how to pretend that racism was now history, but that was hardly the case.
The Republican “Southern Strategy,” which began with Barry Goldwater’s 1964 presidential campaign, was initially a disaster. Goldwater, who ran proudly on his vote against the Civil Rights Act that year, may have won 87 percent of the Mississippi vote, but he was clobbered nationally, as Angie Maxwell pointed out recently in the Washington Post.
“Four years later,” she wrote, “understanding the risks of such an overt campaign against civil rights, Nixon’s team instead coded their racial appeals.” Nixon campaigned on such racial “dog whistles” as the restoration of law and order and a war on drugs and “adopted a stance of ‘benign neglect’ on civil rights enforcement, a message that his advocates, such as Democrat-turned-Republican Sen. Strom Thurmond, bluntly conveyed to Southern whites on his behalf. As Thurmond put it, ‘If Nixon becomes president, he has promised that he won’t enforce either the Civil Rights or the Voting Rights Acts. Stick with him.’”
Maxwell also noted that, a dozen years later, “Reagan expanded Nixon’s racial code to ‘colorblind’ appeals for economic justice. He encouraged Americans to move past race, but also invoked the image of the ‘welfare queen’” — portraying African-Americans as “takers,” manipulators of a public welfare system that perpetuated laziness and siphoned the incomes of white people.
In the Trump era, the racist code language is slipping away. Tearing immigrant families apart at the border is now dismissed with a shrug as necessary and justified, and U.S. Rep. Elijah Cummings’ congressional district in Baltimore is a “disgusting, rat and rodent infested mess.”
Any questions?
–end–
Robert Koehler, syndicated by PeaceVoice, is a Chicago award-winning journalist and editor.
~~~~~~~~~~
Don't miss today's live ADHD expert webinar
Thursday, August 1, 2019 @ 1pm ET - Still time to register & attend!
Can't attend the live webinar?
As long as you register now, we'll email you the video replay link.
Pills and Beyond: A Guide to the Formulations and Delivery Options of ADHD Medication
Date: Thursday, August 1, 2019
Time: 1pm-2pm Eastern Time
(12pm-1pm Central; 11am-12pm Mountain; 10am-11am Pacific)
Find it in your time zone >
Expert: Laurie Dupar, PMHNP, RN, PCC
In the past, the treatment of ADHD was largely limited to short-acting pills. Thankfully, a more diverse range of ADHD treatment formulations and delivery systems is available today. But which one(s) may be right for you or a loved one? Learn more from a Psychiatric Mental Health Nurse Practitioner.
NEW: Qualify for a certificate of attendance when you attend an ADDitude webinar live or listen to the replay.
See all upcoming ADDitude webinars and on-demand webinar replays.
Subscribe to our FREE ADHD Experts Podcast — and leave a review!
Twilight Pre-party/ies EXTENDED !!
Welp, it's official, the coolest party (and by coolest, we mean air-conditioned bliss) in town is the Pre-Twilight parties at The Monarch.
In fact, hours have been extended... now you can enjoy bites, bevs, and tunes from 4-7pm before each Twilight concert ... here's a page with ALL the dates.
Each event has different food, door prizes & drawings, so just because you've been to one, doesn't mean you've been to all!
THIS WEEKCome check out the new August issue of Indie Ogden Magazine!!
See the first 150 of you starting at 4pm...455 25th St....
Did you miss Troubeliever Fest?
O1PRESENTS featured 2 local talents at the Acoustic Cafe on Friday July 12th...
Check out the performances from:
Brooke Mackintosh & Naomi Harlan !
For July and August, O1ARTS has partnered with For Freedoms, a national arts organization, to bring Four|For Freedoms, a tightly-curated subset of their 50 State Billboard Initiative, to our PLATFORMS art site, at 25th & Adams Ave. The exhibition opened Friday July 5 and will continue through August 31.
This important exhibit is up through the end of August; We encourage ALL locals to experience this important exhibition, and to #ARTIcipate by recording the things they wish Freedom OF or FROM...
SEE YOU FIRST FRIDAY ?!?!
