Tag Archives: bone marrow

Geneseo sophomore prepares for bone marrow transplant – Quad-Cities Online

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GENESEO — Trevor Schefsky’s battle of a rare genetic condition began at birth. Now a sophomore at Geneseo High School, that battle likely will make him miss the start of his high school junior year.

Mr. Schefsky, along with his parents, Tony and Lori Schefsky, and hsi brother, Zach, are at the Children’s Hospital in Cincinnati, Ohio, where he is scheduled to receive a bone marrow transplant later this month.

Before that happens, he will undergo chemotherapy to destroy the damaged cells in his bone marrow. Mrs. Schefsky said the process takes four to six months, keeping her son hospitalized until at least July.

His condition, DADA2, is a recessive genetic condition that causes mutations in the CECR1 gene preventing it from correctly encoding the enzyme Adenosine Deaminase 2 (ADA2) that stabilizes the lining of blood vessels.

“Without it, the body attacks its own healthy cells, which, in turn, leads to inflammation, immune deficiency, organ damage and the destruction of bone marrow,” Mrs. Schefsky said.

There is no enzyme replacement therapy available for ADA2 deficiency. Because little is known about the disease, there are relatively few treatments, Mrs. Schefsky said.

Trevor’s journey began shortly after his birth. Until he was 5 years old, his mother said, he suffered from rashes, hives, swollen eyes, high fevers, asthma, pneumonia, joint pain, mouth sores, allergic reactions to antibiotics and his legs “giving out.” She said it is believed he was in remission between the ages of 5 and 12.

“When Trevor was in seventh grade, he had a swollen lymph node in his neck, so we went to our family doctor,” she said. “They did blood work and Trevor’s white blood cells and absolute neutrophils were alarmingly low. We were put in the hands of St. Jude in Peoria.”

Because of his blood levels, he couldn’t attend school and be in public places. He went though many tests in search of a diagnosis; although doctors determined his illness was related to his immune system, no single cause of his illness was found.

He was referred to an immunologist at the Children’s Hospital in Cincinnati, Ohio, where they also did many tests — but reached no diagnosis.

“However, they were treating the low levels he had with infusions,” Mrs. Schefsky said. “As the infusions and medications have never helped with his numbers coming up, they have prevented him from illnesses.” 

Trevor could return to school as an eighth-grader, but was not allowed to play soccer, his favorite sport. He also couldn’t snow ski, play basketball or participate in any contact sports because of an enlarged spleen.

“That was a very hard year for Trevor,” Mrs. Schefsky said. “He lived his life with monthly infusions and daily medications and weekly blood work that showed to always be low. He was hospitalized in Peoria anytime he would run a fever of 99.6 or above.

“Our lives went on hold in the blink of an eye,” she said. “We lived our lives as normal as possible. Trevor was rarely sick and he didn’t like his life being on hold.

“We were able to get soccer approved with a spleen guard,” she said. “He was feeling like life was semi-normal.”

Trevor was selected for a research study at the Children’s Hospital in Cincinnati. About a year later, the family received a phone call with a diagnosis: DADA2.

“No one seems to know very much, but more is being learned every day,” Mrs. Schefsky said.

In November 2016, the family went to Washington, D.C., for the first-ever conference on the disease. They were able to meet families going through the same thing as they were, and the doctors working on a cure.

Mrs. Schefsky said Trevor has reached a point where medications and infusions are not raising his levels.

“His bone marrow is at 40 percent, so we cannot wait any longer,” she said. “It is time for a bone marrow transplant, which will hopefully be a cure for Trevor.

“In all of this — with other hardships and losses — our faith has kept us going and I have always felt God is with us,” she said. “I do not believe God gives us these hard times in our life, but I do completely believe that God is with us in these hard times. He is there in our doctors and, with as rare as a condition that Trevor has, it is a complete miracle that we have a diagnosis at all.

“God is good all the time,” she said. “All the time, God is good.”

Mrs. Schefsky hopes their story encourages others to learn more about DADA2 by visiting dada.org. “TrevStrong” T-shirts also are being sold to support Trevor’s journey.

The T-shirts include scripture from Joshua 1:19 on the back: “Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”     

Shirts may be ordered at trevstrongshirts@gmail.com. Contributions to TrevStrong may be mailed to Central Bank, 101 N. State St., Geneseo, IL 61254, made out to TrevStrong with “Schefsky” in the check memo line.

Man in need of bone marrow transplant finds perfect match: his brother – Fox17

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KENTWOOD, Mich. — A young man, unable to leave his home without wearing a mask, will soon be getting back to living a normal life. It’s all thanks to a bone marrow transplant. And as it turns out, the donor was closer than ever imagined.

It was his brother.

Malik Kirkwood,21, was born with sickle cell anemia, a disease where one’s body produces abnormally-shaped red blood cells that can cause a lot of pain. Malik has been through everything from blood transfusions, chemotherapy and now, this bone marrow transplant. Just three months post-surgery, Malik is already seeing change.

But right now, his immune system is compromised due to chemotherapy. Outside his home in Kentwood a sign reads: “Important Notice!! If you are sick, or have been in contact with someone who has shown symptoms of being sick, please come back another day when you are feeling healthy. This is the home of a young man recovering from a bone marrow transplant and chemotherapy. Keeping him healthy is our number one priority.”

For 21 years, Malik has endured a life filled with pain and hospital stays.

“It was pretty tough to go through, each time the pain would be different,” Malik said.

Malik in the hospital

Malik in the hospital

He hoped a bone marrow transplant would rid his body of the rare disease. But first, he’d have to find a match. To his surprise, his 17-year-old brother, Javion Kirkwood was a 100% match.

Javion said he didn’t even have to think twice.

“The doctors asked me several times do you want to do this I’m like ‘yeah,’” he said. “That’s my brother. It makes me feel good that I helped him get through the situation.”

They’re brothers by blood and friends by choice. Malik did jokingly admit, however, that he used to “bully” Javion. They both laughed.

“We hang out a lot now,” Javion said. “Years ago we were close, we just weren’t hanging out.”

Now, the two enjoy hanging out and playing video games with each other — especially now that Malik feels better than ever.

The boy’s mother, Estella Prater is overjoyed.

“They [doctors] said it would only be a 25 percent chance they would be a match,” Prater said.
“I can’t stop thanking God, I cry every day, tears of joy I still can’t believe it.”

Nor can Malik’s caregiver, Niki Smith.

“When we realized Javion was a 100% match it was a huge blessing,” Smith told FOX 17. “If Javion wasn’t a match, they would have had to search a donor bank, which would have been a much longer process.”

Thanks to a selfless act from a selfless brother, Malik’s life is forever changed.

“After the transplant, it’s been amazing,” Smith said. “He’s grown like physically he’s gotten bigger.”

Malik underwent chemo both before and after transplant. That’s the true reason his immune system is so compromised right now and will be for the next 40-something days.

We’re told that Malik now has 87 percent of his brother Javion’s cells, the rest are Maliks. The young man no longer has sickle cell disease, just sickle cell trait.

If you would like to donate to help Malik out, click here.

Doctors create ‘MAGIC algorithm’ to predict bone marrow transplant patients’ risk of dying – Science Daily

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Researchers at Mount Sinai Health System have discovered a way to predict whether blood cancer patients who received a bone marrow transplant will develop graft-versus-host disease, a common and often lethal complication, according to a study published in JCI (The Journal of Clinical Investigation) Insight.

This international study at 11 cancer centers examined blood samples from almost 1,300 bone marrow transplant patients and found that two proteins present in blood drawn a week after a transplant can predict whether a patient will develop a lethal version of graft-versus-host disease, weeks before the disease’s symptoms normally occur. Scientists at the Mount Sinai Acute GVHD International Consortium (MAGIC) created an algorithm, dubbed the “MAGIC algorithm,” that determines a patient’s risk of developing the disease by measuring concentrations of these proteins, ST2 and REG3a.

“The MAGIC algorithm gives doctors a roadmap to save many lives in the future. This simple blood test can determine which bone marrow transplant patients are at high risk for a lethal complication before it occurs,” says James L.M. Ferrara, MD, Professor of Pediatrics, Oncological Sciences and Medicine, Hematology and Medical Oncology at The Tisch Cancer Institute at the Icahn School of Medicine at Mount Sinai, and Co-director of MAGIC. “It will allow early intervention and potentially save many lives.”

Doctors at Mount Sinai are now designing clinical trials to determine whether immunotherapy drugs, normally used during the onset of graft-versus-host disease, would benefit patients as soon as this new blood test determined they would be at high risk for severe onset of the disease. Researchers believe that if patients receive the drugs once the test is administered, which is well before symptoms develop, they would be spared the full force of the disease, and fewer of them would die.

“This test will make bone marrow transplant safer and more effective for patients because it will guide adjustment of medications to protect against graft-versus-host disease,” says John Levine, MD, MS, Professor of Pediatrics and Medicine, Hematology and Medical Oncology at The Tisch Cancer Institute at the Icahn School of Medicine at Mount Sinai and Co-director of MAGIC. “If successful, the early use of the drugs would become a standard of care for bone marrow transplant patients.”

Graft-versus-host disease occurs when the bone marrow donor’s immune system sees the recipient’s body as foreign and launches an immune response, attacking the recipient’s tissue, primarily the skin, liver, and gastrointestinal tract. Between 40 and 60 percent of patients who receive bone marrow transplants later develop severe graft-versus-host disease, and about 40 percent of people who develop the disease die.

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Materials provided by The Mount Sinai Hospital / Mount Sinai School of Medicine. Note: Content may be edited for style and length.

Va. boy needs a bone marrow transplant – WUSA9.com

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ALEXANDRIA, VA. (WUSA9) – An Alexandria, Va. boy is in desperate need of a bone marrow transplant.

Eleven-year-old Jack Creedon was diagnosed with acute lymphoblastic leukemia (LLS) in November of 2015. But now, even after several attempts to find matching donors, only one donor remains compatible and Jack’s chances for survival depend on the number of matches. 

Typically, family members are go-to donors, but Jack’s case is different.

Jack was adopted from Russia when he was 18 months old. As if bone marrow transplants are not complicated enough, Jack’s situation is even more involved because his family members are not genetically compatible.

Lesli and Dan Creedon, his parents, decided to search for a donor using the international bone marrow registry. The system houses approximately 30 million potential donors. Bone marrow can be removed and transported to patients across the world for next day transplants.

The registry found only two compatible donors for Jack, one of which did not pan out. The Creedons, however, are not discouraged.

“We are anxious but optimistic. Living in uncertainty of ANY kind is stressful even if you don’t realize it,” Lesli responded. “Jack is ready to find a donor, have the transplant and get it over with! He understands his disease and…has been remarkably strong and positive despite the limitations he has had.”

Jack has been the focus of two major LLS campaigns, one for Student of the Year and the other launched by Christine Thayer’s Woman of the Year program.

He also completed the fifth grade using a robot that allowed him to digitally interact with his class at Charles Barrett Elementary School in real time.

Jack’s family remains resilient too.

Lesli Creedon has called attention to her son’s cause through a broad range of social media platforms. The #Heroes4Jack video can be viewed here.

Recently, the family has inspired a series of “swabbing” events. Over 40 locals flocked to St. John the Baptist, a Russian Orthodox Church in the District, to swab their saliva for DNA compatibility testing. Coworkers of Lesli’s at the National Zoo and of Dan’s at the Federal Aviation Administration also joined the swabbing efforts.

Jack has been a fighter for the past seven months and intends to continue fighting. Despite his roadblocks, his infectious sense of humor is unwavering.

Anyone can support the cause to help Jack and others affected by LLS by visiting Be The Match.

 

Luling boy receives bone marrow transplant – WDSU New Orleans

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It’s been a tough road for 9 year-old Chad Grosch.

Diagnosed with leukemia in 2014, he appeared to have beaten the disease by spring of the following year.

“I kicked cancer’s butt!”, declared Chad as he took his last chemotherapy treatment in April of 2015. Chad and his family were exuberant.

But just months later, their worst of their fears were realized. Chad’s cancer had returned. When various treatment options were unsuccessful, the search began for a bone marrow donor match. After months of looking and waiting, a match was found. Chad underwent a bone marrow transplant at Children’s Hospital in New Orleans April 27.

With his immune system substantially weakened, the door to Chad’s hospital room remains closed to everyone except doctors, nurses and family.

“We’re just taking it minute by minute, day by day,” said Chad Grosch, little Chad’s father.

Doctors at Children’s Hospital continue monitor Chad closely, but are pleased with the transplant and his progress so far.

“A very good match for a bone marrow transplant, a very good donor, so we’re fortunate. Definitely not all kids have perfect matches like he did,” said Dr. Dana LeBlanc, pediatric hematologist-oncologist at Children’s Hospital.

“He’s doing pretty good. He’s pretty sick and kind of not feeling well, but right now we really need some platelets. That’s kind of the main thing that’s kind of happening to him at the moment,” added Chad’s father. 

Nothing is more critical for Chad and kids like him recovering from bone marrow transplants than blood and blood platelets. Because of the intense chemotherapy leading up to the procedure, Chad cannot make his own platelets and red blood cells right now.

His survival depends on donors.

“They are a life and death issue. If he did not have platelets and blood, he would not survive. He could not survive,” said Dr. LeBlanc.

Keeping the shelves stocked with blood is a continuing challenge.

“We are extremely low especially with O-negative blood type, but also O-positive blood type, A-negative blood type, pretty much across the board,” said Paul Adams of The Blood Center in New Orleans.

Many of the racks at the Blood Center are empty right now, and blood platelets only have a shelf life of a few days.

“It doesn’t matter your blood type. If you’ve never donated with us, now is the time to come in. Now is when we need you more than ever,” said Adams.

It has been a roller coaster for little Chad and his family. After beating the disease once, Chad is now isolated and vulnerable, but battling again.

“He has to have those platelets to survive. It’s literally a life or death event,” emphasized Chad’s dad.

Part of the family’s prayer was answered when a bone marrow donor match was found and the transplant completed. Now the need is for donors to step up and give blood, the gift of life.

To donate, contact the Metairie Donor Center at (504) 887-2833 or the main office of The Blood Center at (504) 524-1322. For more information,log onto www.thebloodcenter.org.

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Community rallies around 4-year-old in need of bone marrow transplant – WJHL

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JOHNSON CITY, TN (WJHL)- On Saturday the community in Boones Creek rallied around a brave 4-year-old in need of a bone marrow transplant.

Kaden Haynes was diagnosed back in March with MDS, also known as Myelodysplastic syndrome.

Kaden’s father, Nathan, said he is now receiving treatment at St. Jude in Memphis.

“He has just completed a seven day round of chemo which was very succcessful,” Haynes said.

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Nathan said Kaden is still on the list for a bone marrow transplant, and so his family and church helped organize an event to raise awareness for the national registry, and to get people to sign up to become a donor.

“It is hard to fathom the love and support here locally in East Tennessee, and our church, and our work, its overwhelming and it means so much to us to help our son,” Haynes said.

We also spoke to Linda Hilton with Blood Assurance who was helping out at the event.

Hilton said about 30 people signed up for the bone marrow registry on Saturday.

She said at any given time there are between 3,000 to 6,000 looking for a match, and that every three minutes someone is diagnosed with a form of blood cancer.

“There are thousands every day that are looking for a match, as Kaden was a normal healthy little boy, and then all of a sudden he has a devastating disease, that’s how it happens for many patients and there are thousands looking,” Hilton said.

Haynes said they still have a long road ahead as far as Kaden’s treatments go, telling us he could be in Memphis at least another six months.

He said they hope to continue to raise awareness as often as they can about the bone marrow donor registry.

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Inspiration + Education : . . . . for parents of children who are going through transplant

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