Powell child must undergo bone marrow transplant

Posted 4/3/18

Noel was taken back in and blood work showed his platelet count was extremely low; the “rash” was determined to likely be petechiae — “basically broken blood vessels,” explained his mother, Tatiana Rivera.

Noel was eventually diagnosed …

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Powell child must undergo bone marrow transplant

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In mid-February, 2-year-old Noel Rivera had what appeared to be a rash all over his body. His parents took him to the walk-in clinic in Cody, but, despite some Benadryl, the rash persisted.

Noel was taken back in and blood work showed his platelet count was extremely low; the “rash” was determined to likely be petechiae — “basically broken blood vessels,” explained his mother, Tatiana Rivera.

Noel was eventually diagnosed with severe aplastic anemia, a very rare disease.

“Aplastic anemia is basically when your body doesn’t make any blood. His bone marrow is failing,” Tatiana explained in an online post.

Until February, there were no indications that Noel had any health problems.

“You would have never been able to tell, because nothing bothered him,” Tatiana said, adding, “There were no signs.”

Noel was sent to Montana and then to Children’s Hospital Colorado in Aurora on Feb. 18, where he’s undergone treatment and multiple bone marrow biopsies.

“He has no white blood cells, so he has no immune system,” Tatiana said. “Any little thing like a common cold would take a big toll on him.”

While his family knew that aplastic anemia is a rare disease, they recently learned Noel’s condition is even more rare — he has myelodysplastic syndrome or MDS.

“They are telling us this has a pretty high chance of turning into leukemia, and if it does, it will hit him hard — harder than it usually would,” Tatiana wrote on a GoFundMe page set up for Noel’s medical expenses. “They are hoping to prevent this from happening, and are working as quickly as possible.”

On Wednesday, Noel’s family met with the bone marrow transplant team and found out  his dad, Alan, will be his donor.

Throughout the month of April, doctors will be checking Noel’s heart, lungs and kidneys, “pretty much everything to make sure they are all functioning properly and are ready for all the meds he will be put on,” Tatiana said.

Noel and his parents have been in Colorado since February.

After weeks in the hospital, they recently started staying at Brent’s Place, “basically like the Ronald McDonald House, but for bone marrow transplant patients,” Tatiana said. “They have the same ventilation system as the hospital and very strict cleaning guidelines. So instead of having to sit in a hospital room until transplant, we will have a little more freedom.”

Unfortunately, because Noel is so vulnerable to any sickness without a functioning immune system, he hasn’t been able to spend time with his sister Emma, who will soon turn 4. Emma is staying with family while Tatiana and Alan remain with Noel.

Starting in early May, Noel will begin chemo/radiation for about a week to 10 days, and then undergo the transplant. He will then be hospitalized for another four to six weeks.

“He does run the chance of rejecting the bone marrow,” Tatiana wrote. “That risk runs very high the first 15 days after transplant, so he will be closely monitored.”

Noel will continue regular check-ups following the transplant, since he will still be at risk.

“Once he passed his two-year mark, the chances of him rejecting it are very slim,” Tatiana wrote. “He’s got a long road ahead of him.”

Since Noel’s condition is so rare, only about 10 doctors in the U.S. specialize in it. Thankfully, one is in Aurora, Tatiana said.

Tatiana and Alan have learned a lot about a disease they had never heard of months ago.

“It’s really real and it’s really scary, especially when you have no idea what this even was, and then … you realize he’s less than 1 percent of the U.S. population that has this,” Tatiana said.

To help the family with medical costs and related expenses, a GoFundMe page has been set up at www.gofundme.com/noels-aplastic-anemia. A fundraiser is planned for April 21 from 8 a.m.-4 p.m. at the fairgrounds in Powell. It will include a vendor show, raffle and bake sale.

Tatiana thanked the community for their continued support and prayers.

“… right now is the calm before the storm for Noel,” she said.

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