Teen receiving bone marrow donation from twin brother

 

By Ron Giofu

 

A fundraiser is being planned for 18-year-old Amherstburg youth March 24 with his identical twin brother scheduled to save his life just days afterword.

Jacob Robert will be the subject of the buffet-dinner fundraiser at Shooters that Sunday afternoon but it will be a bone marrow transplant, planned for March 27 in Hamilton, that is the bigger day for the General Amherst High School student.

Jacob will receive the transplant thanks to a donation from his twin brother Josh and it will be that transplant that will likely cure his severe aplastic anemia.

The ordeal came out of left field for Jacob and his family, suddenly coming to the forefront Feb. 3. That day, Jacob began having nosebleeds that mother Julie said lasted 45 minutes on each side.

“He was white as a ghost so I started to panic,” she said.

Jacob went to the doctor the next day and 24 hours after that – Feb. 5 – he was told to go the emergency room at Windsor Regional Hospital’s Met Campus for a blood transfusion. Julie said his blood counts were “unbelievably low.”

The diagnosis of severe aplastic anemia came Feb. 7.

Julie said Jacob was never symptomatic and typically never got sick with anything uncommon.

“We weren’t expecting it,” added Jacob. “It was like hitting a wall.”

Jacob has very low blood marrow due to the rare disease and that means his blood production isn’t what it should be. He gets transfusions only to see his blood counts drop again. Thus far, he has had three platelet transfusions and a blood transfusion.

While some of his treatment has been in Windsor, other treatments have to occur in Hamilton. He has had three treatments in Hamilton so far and will spend at least three months there once he receives the bone marrow transplant from his brother.

“We found out last Tuesday that Josh is a 100 percent match which makes him a perfect match,” said Julie. “We couldn’t ask for anything better. That was one of the most exciting days we’ve had. He saved his brother’s life.”

 

Jacob “Jake” Robert (left) and twin brother Josh hold a poster promoting a March 24 fundraiser at Shooter's Roadhouse. Jacob, who has severe aplastic anemia, has to undergo a bone marrow transplant later this month and will receive the donation from Josh as he is a perfect match for Jacob. The fundraiser will go to offset some of the family's expenses while in Hamilton for the procedure.

Jacob “Jake” Robert (left) and twin brother Josh hold a poster promoting a March 24 fundraiser at Shooter’s Roadhouse. Jacob, who has severe aplastic anemia, has to undergo a bone marrow transplant later this month and will receive the donation from Josh as he is a perfect match for Jacob. The fundraiser will go to offset some of the family’s expenses while in Hamilton for the procedure.

Reg Simpson, the boys’ stepfather, said he has a twin brother himself – Ricky – and knows what the Roberts are going through.

“Thank God (Jacob) has a twin as his insurance,” said Simpson. “By one being hurt, the other one hurts. Both of them are in this mess together.”

Simpson awaits the day the family’s lives get back to normal, noting this experience has had a lasting impact.

“It has changed my life, their mother’s life and the kids’ life,” he said.

“It’s stressful at points,” Josh said of the process.

When Julie, Josh and Jacob go to Hamilton for the transplant, Jacob will have to undergo five days of chemotherapy to destroy his current bone marrow while Josh will undergo a procedure where he will be able to mass produce stem cells that will be harvested for his brother.

If there is an illness, the whole process gets pushed back.

“If I get sick, everything gets delayed,” said Jacob.

Trips outside the house for Jacob are limited due to his severe aplastic anemia due to the threat of illness. Josh said it will be a “huge weight off our shoulders” when the transplant is done with Jacob adding it is not even the actual procedure that causes the most anxiety.

“I’m nervous not so much about the transplant but for the chemotherapy,” he said, adding it’s “nerve wracking” to see what others have gone through. Through talking with other chemotherapy patients, he said he was told “it’s like a really bad flu.”

Jacob’s immune system is poor now but it will be next to nothing immediately after the bone marrow transplant. After that, he is expected to improve and make a full recovery.

“Jacob will be in isolation for four weeks (after the transplant),” said Julie. “He will have no immune system.”

The remainder of the time in Hamilton will see Jacob recuperating while doctors monitor him in case his body rejects the new bone marrow. The family is cautiously optimistic that won’t happen due to Josh being a perfect match, but if it does, the process would start again.

“I’m praying to God that will not happen,” said Julie.

For the next few years following a successful transplant, Jacob will be monitored to ensure his recovery is going as planned. Jacob noted he just found out he will have to get 18 years of immunization shots all over again because of the bone marrow transplant.

Julie said her twin sons have gotten closer because of this ordeal. Younger brother Ben is also being supportive as is the entire family. General Amherst has been “wonderful” as well, said Julie, not just supporting the twins but Ben as well.

Jacob is currently not attending school while Josh is off for the month to prepare for the procedure. Jacob can’t have visitors and communicates with friends mainly through texts, online messaging and phone calls. Julie is off from her job at CIBC as well, which is starting to cause some financial pressures. The community has been ready to assist the family since word of their plight broke.

“Everyone’s been supportive, saying ‘anything you need, let us know’,” said Josh.

“The town’s been amazing,” Julie added. “Amherstburg is a close-knit community.”

Julie said Shooter’s Roadhouse is hosting the fundraiser and that the local business is doing a lot to help them. Other local businesses have helped and Vista Print has helped donate various materials such as posters, t-shirts, banners and other supplies. Simpson works at Vista Print. Donations can be made by calling Katie Shepherd at 519-726-5479 or Simpson at 519-736-4056.

“Amherstburg is a beautiful town. The town is very generous. You could not find a better town to live in,” said Simpson.

Proceeds will help the family as there are expenses such as the family’s accommodations, food, parking and other needs during the trips to Hamilton. Simpson and Ben will visit on weekends.

Tickets for the March 24 fundraiser are $15 each or $10 for children under 10 and available at CIBC in Amherstburg, at Shooters or by calling Simpson or Shepherd. Doors open at 3 p.m., dinner is at 4 p.m. and their will be door prizes, Julie said.

The family is also encouraging others to get their cheeks swabbed and get on the list to be a bone marrow donor. Jacob pointed out that getting swabbed is simple and requires nothing more than a Q-tip in the mouth. Julie said they were lucky as the twins are a perfect match but others need to go on the list to find donors. The family hopes a swab event comes to Amherstburg soon.

“(The list) needs to be much bigger,” she said. “The test is so simple.”

2 responses to “Teen receiving bone marrow donation from twin brother”

  1. Bernadette Heisler says:

    The article was so well written for my grandsons. Everyone I know is praying for the success of this procedure. Jacob, Joshua and Ben are the best. I am so proud of their positive thinking and determination. Love you all.

  2. Anne Dreer says:

    Dear Julie,
    I am praying for your boys so that all goes well. I will keep in touch with your mom and if there is anything I can do, just let me know.
    Keep thinking good thoughts.
    Love,
    Anne Dreer