Family Spotlight

A COTA Family is Celebrating the Ultimate Gift … the Gift of Life

December 1999 was a time of great joy and great stress for the Copeland family of Colorado.  Deb Copeland delivered twin boys on December 2nd, one of whom had been diagnosed in utero with a congenital heart defect.  Baby Ben was healthy, but Baby Drew was not.  Drew was diagnosed with Double Outlet Right Ventricle Mitral Atresia, which meant the pumping chamber of his tiny heart was malformed.  Drew would need a heart transplant to survive.

Throughout his early years, Drew survived three open heart surgeries and numerous heart catherizations.  However, in July 2009 Deb and John Copeland were told that Drew’s heart was failing.  During these days of fear and stress, the Copeland family reached out to the Children’s Organ Transplant Association (COTA) for guidance and support.

According to John and Deb, “COTA provided hope through all of the support we received while waiting for a new heart for Drew.  The support came in the form of kind words, financial assistance, cards and prayers.  COTA meant we were not alone during the most intense and painful time in our life.  The immense love we felt was like a life boat that cushioned the stress and pain we were experiencing.”

The transplant team at The Children’s Hospital in Aurora, Colorado, placed Drew on the organ waiting list.  After months of prayers, the Copeland family received the call on December 21, 2009.  By early the next morning, Drew was in surgery receiving his new heart … and his second chance at life. 

“I wept when our transplant coordinator told me the new heart was beating in his little body.  Gratitude surged through my soul.  Praise and thanksgiving were on my lips during this holiday time, and our prayers spilled over to our donor family,” Deb remembers.

This December will be Drew’s two-year transplant anniversary. 

“Receiving a heart at the holidays was an amazing miracle.  Before the transplant, Drew couldn’t run down the stairs and now he runs around the baseball diamond.  He loves to feel winded because he trusts his new heart that is now allowing him to be a little boy … what a miracle,” said Deb and John.

The holidays will be lively this year for the Copeland family, and undoubtedly Deb and John will welcome the chaos.

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Transplants Today

Black Children Less Likely to Get Kidney Transplant Before Dialysis

The team of researchers at Emory University also found that black children with kidney failure and no health insurance are more likely than white children to die while waiting for a kidney transplant.

The Emory University researchers analyzed 2000-2008 data from the U.S. Renal Data System, and found that white children had a 56% higher average annual rate of preemptive transplants than black children, and a 50% higher rate than Hispanic children.  A preemptive transplant is one performed before a patient begins dialysis.

White children were also more likely to have a living donor.  Nearly 79% of white children had a living donor, compared to 57% of Hispanic children and 49% of black children. The reasons for these racial disparities aren't clear, but minority patients may have less access to health care, the researchers said.

The Emory team also examined deaths among all 8,146 kidney failure patients younger than 21 who began dialysis between January 2000 and September 2008, and who did not receive a kidney transplant by September 2009.  There were 896 deaths, for an overall death rate of 9.7%.  Black children with no health insurance were 59% more likely to die than white children.  Hispanic children were less likely to die than children in other racial groups, regardless of insurance status.

The findings were presented in November at the American Society of Nephrology's
annual meeting. Because this research was presented at a medical meeting,
the data and conclusions should be viewed as preliminary until published in a
peer-reviewed journal.                                                                                     

Source – www.nlm.nih.gov/medlineplus

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New Half-Match Bone Marrow Transplant Procedure Yields Promising Outcomes
for Cancer Patients

A clinical trial conducted at the Kimmel Cancer Center at Jefferson (Philadelphia) testing a unique, two-step
half-match procedure has produced some promising results.  During the trail, the probability of overall survival was 45% in all patients after three years, and 75% in patients who were in remission at the time of the transplant.

Neal Flomenberg, MD, Chair of the Department of Medical Oncology at Thomas Jefferson University Hospital, Dolores Grosso, DNP, Co-Principal Investigator and lead author of the article, and colleagues have recently reported the results of 27 patients treated on this phase I/II trial who had diagnoses that included leukemia, lymphoma and myelodysplasia.

The patients received their transplant in two steps.  First, after receiving radiation therapy to further treat their disease, the patients were given a specified dose of T cells (a type of immune cell that fights infection) from their half-matched family donor.  The donors were parents, siblings or children of the patient.  The patients next received the drug cyclophosphamide to help the newly infused donor T cells to be more tolerant to the patient's body.  The second step of the transplant occurred when the patients received a dose of their donor’s stem cells to help their blood counts return to normal and further strengthen their new immune system.

Dr. Flomenberg and his team found that after a follow-up of 28-56 months, overall survival for the patients after one year was 54%, and 48% at three years.  Patients in remission at the time of the transplant fared better with an overall survival of 75%.  Seventeen of the 27 patients were alive six months after their transplant, which was the official end point of the trial.

While more recent studies have shown promising increases in overall survival for patients undergoing half-match transplants, historically, clinical outcomes for these types of transplants have been poor, which has limited the use of this type of procedure.  The results of the Jefferson trial represent a very promising improvement in this area.

Bone marrow or stem cell transplants are performed in order to replace a patient's diseased immune system with that of a healthy donor.  Traditionally, the use of a genetically fully matched donor has been associated with the best results in bone marrow transplant, but many patients lack a fully-matched related or unrelated donor.  However, almost every patient will have a half-matched donor (also known as a haploidentical donor) in their family.

The successful use of haploidentical donors would greatly expand the number of donors available to a patient, extending this therapy to almost everyone who would benefit from receiving a transplant.  This would include minority patients, including patients with sickle cell anemia, who do not have as many fully-matched unrelated donors available to them.

"Our half-match bone marrow transplant results open up many doors for different types of patients who can't find an exact match," said Dr. Flomenberg.  "It also justifies recommending that patients at high risk for relapse should consider having a half-match transplant early in the treatment of their disease."

Jefferson medical oncologists' approach is unique in that the dosage, timing and treatment of donor T cells was carefully controlled and optimized.  No other transplant regimen controls the exact amount of donor T cells given.  The investigators believe that dosing
the T cells in this way helped avoid many of the life-threatening side effects of this type
of transplant.

"We believe the dosage and timing of T cells from the donor into the patient is essential for success.  In fact, it's equally as important as prescribing specific doses of radiation and chemotherapy to initially treat the disease," said Dr. Grosso.  "The goal of this two-step regimen was to develop a better technique for half-matched patients with relapsed blood cancers initially, but we also showed that it can be appropriate for high risk patients earlier in their disease who lacked fully matched donor options."

Source – www.sciencedaily.com

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COTA News

Are You Ready to Let COTA Help Your Transplant Families?

For more than 25 years, the Children’s Organ Transplant Association (COTA) has assisted families from throughout the nation, representing every ethnic, economic, religious and social background. Working and guiding volunteers nationwide, COTA has helped nearly 1,800 families and raised more than $63 million for transplant-related expenses.  Along the way the team of professionals at COTA has shared tears, has helped families to conquer huge obstacles, has celebrated miracles, and every day … has hoped.

COTA will work closely with volunteers in your patients’ home communities to ensure funds are raised ethically and used appropriately.  Because COTA is the trustee of the money raised, these funds are not taxable income and do not jeopardize the family’s participation in assistance programs. Additionally, COTA offers challenge grants of up to $10,000 to each fundraising campaign.

To begin a COTA fundraising campaign, ask your families to:

• Complete and sign a Patient Agreement.
• Complete a Family Information Form.
• Ask their transplant physician to complete the Medical Information Form.
• Recruit one key volunteer and complete the Volunteer Information Form.

Please feel free to call us at 800.366.2682 or click now to Request Information about COTA to see how COTA can give hope and make miracles for your transplant families.  COTA looks forward to hearing from you, and looks forward to helping make your families’ road to transplant just a little easier.

Let us know if there is a tool, or printed piece, that would be helpful to the transplant families you serve. We look forward to hearing from you. COTA's staff is here … just
a phone call or email away … ready to make your families' road to transplant a
little easier.

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Welcome to the COTA Family

These are recent additions to our COTA Family. Transplant Professionals referring
patients to COTA play a vital role in Giving Hope and Making Miracles for families of transplant-needy patients.

	Two year old Rylynn Riojas received a heart transplant on October 6, 2011 at Children's Medical Center in Dallas, Texas. COTA for Rylynn R volunteers from her hometown of Lampasa, Texas have teamed together to raise funds and are over halfway to their goal!
	Doctors at University of North Carolina Medical Center in Chapel Hill have recommended a life-saving double lung transplant for Patti Benedict, from Asheboro, Tennessee. An estimated $100,000 is being raised by COTA for Patti B volunteers.
	Born on September 4, 2010, Easton Rayoum was diagnosed with Multicystic Dysplastic Kidney Disease, and doctors at Saint Louis Children's Hospital in Missouri recommended a life-saving kidney transplant. On November 1, 2011, Easton received his transplant! COTA for Easton R volunteers from Bloomsdale, Missouri are working together to raise funds.
	On June 25, 2011, Jake Wisniewski received a life-saving double lung transplant at Newark Beth Israel Medical Center in Newark, New Jersey. COTA for Jake W volunteers from Clifton, New Jersey set out to reach a fundraising goal of $100,000 and have recently surpassed it!
	Emily Marshall received a life-saving kidney transplant on September 21, 2011 at the Children's Hospital at Vanderbilt in Nashville, Tennessee. An estimated $30,000 is being raised by Tullahoma COTA for Emily M volunteers.

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COTA Fast Fact

Flexible Services Available at No Cost
The Children's Organ Transplant Association program is flexible -- COTA assists families regardless of their need or the type of support they require.

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