Sister’s bone marrow saves 3-year-old’s life

BY MICHELLE ROSENBERG
Staff Writer

Julia, Brokaw, 3, (center) poses with her two sisters Grace, 6, and Danielle, 8 (l-r). Julia was diagnosed with Leukemia in December and received a bone marrow transplant from her sister, Danielle, in March. MATAWAN — In just three short years, little Julia Brokaw has overcome more hardships than most people do in a lifetime.

Julia was diagnosed with leukemia in December, and underwent a bone marrow transplant in March. She’s been through physical, occupational, and even music therapy. She received massive amounts of radiation and chemotherapy, causing her hair to fall out.

“Julia’s had her maximum dose of radiation for a lifetime, she needs to stay out of the sun forever,” Susan Brokaw, Julia’s mother, said.

Julia’s most recent battle with leukemia wasn’t her first. She has been fighting sickness almost her entire life.

It all started when she was 1 year old and was diagnosed with germ cell territoma. She was forced to undergo five months of chemotherapy in three different stages. The chemo was able to destroy the sickness, but unfortunately, Julia fell victim to the 4 percent chance of developing leukemia as a side effect.

Julia spent one year cancer-free before she was diagnosed with leukemia this past December.

The Brokaws were devastated when they were told that their only option was a bone marrow transplant.

“I think I spent an entire month convincing myself that we didn’t need to [get a transplant] and that there was some other way,” Susan Brokaw said.

The Brokaws began exploring every option they could, looking into all kinds of holistic medicine, and meeting with chiropractors, acupuncturists and even an energy healer, she said. They looked at online testimonials of so-called “miracle drugs” and didn’t agree to go through with the transplant until they were told by holistic doctors that it was their best choice, Susan said.

Doctors told the Brokaws that it is not necessary for them to get tested to see if their bone marrow matches Julia’s because parents have the same chance as the general public at being a match. The best option is siblings, and the Brokaws decided to have both of their other daughters, Grace, 6, and Danielle, 8, tested to see if they were possible matches. Grace didn’t match, but Danielle was a perfect six-point match, Susan said.

So many families want to do a transplant and can’t because there is no match, Susan said. She said she was thankful that they had the option.

Julia’s oncologist told the family not to base their transplant decision on the 10-15 percent chance that Julia wouldn’t make it due to complications. She said that Julia was a very healthy child otherwise and had great chances going in, Susan said.

Once they decided to do the transplant, the Brokaws, who live in Arizona, decided to come back to New Jersey, where the Julia’s father, Randy, grew up and where they

would be surrounded by family, Susan said.

They thought they would have until the end of March to pack and prepare for their trip, but were told by doctors that the best time for Julia to fly would be that week, she said. They packed for their six-month journey in three days and arrived at Randy’s parents’ Matawan home on March 7.

Julia had been receiving chemo treatments since December, and she was on medication that was making her sick and forcing her to vomit so much that she was dehydrated. She had to be checked into the hospital immediately for drugs to be administered, Susan said.

Julia received the transplant at the Children’s Hospital of Philadelphia.

The Brokaws were nervous as Julia’s transplant date drew closer, and now they were in an entirely different environment with different doctors.

“You have to trust these people blindly because you hand them your child,” Susan said.

Julia seemed to take to the new doctors and the new hospital very well, Susan said. “She had no problem letting me leave and spending time with the staff. They have a great staff there,” she said.

The week before the transplant was scheduled, Julia had to undergo a serious amount of radiation and chemo, Susan said. They count down, starting on day seven and ending on day zero, which is transplant day, she said.

Julia had the chemo first, from day seven to day four, and then had the radiation from day three to day zero.

“That was hard, to send her for that,” Susan said. Julia’s skin got darker and started peeling off, she was swollen and much sleepier, she said.

The massive amounts of treatments she was given killed every white blood cell in her little body, destroying all the bone marrow, which is where the leukemia is, Susan said.

The transplant is designed to replace the cells that were destroyed with healthy cells.

The week leading up to the transplant wasn’t only tough for Julia, but for her sister, Danielle, who donated the marrow as well. The Brokaws let Julia watch a movie with Danielle about bone marrow transplants to prepare her for what she was about to do.

“I thought it was important for her to see what her sister had to go through,” Susan said.

Danielle has three puncture marks on her body from where they took her blood. Danielle wasn’t nervous — she packed her bags and was ready to go help her sister, Susan said. They removed her marrow, washed it, and hung up the stem cells like a bag of blood, Susan said. Then they just transfused it into Julia’s body, she said.

It wasn’t that bad for Danielle because Julia is a lot smaller than her, so they didn’t need to take as much, she said.

While Danielle was anxious to help her sister, Grace was devastated that she wasn’t a match, she said. The Brokaws had to take Grace to the hospital and have her blood withdrawn so she would feel like she was helping to save Julia’s life, Susan said.

Julia’s day zero transplant day arrived on March 30. That day, before the transplant, Julia got a little surprise as Dora the Explorer, her favorite cartoon character, came to the hospital and made sure to pay a special visit to her.

“That was definitely a highlight,” Susan said.

One of the highlights for Susan was having two other moms who were going through the same thing to talk to. There was a 13-year-old and an 18-year-old also getting transplants, she said.

Julia remained in the hospital a total of 32 days, and was discharged on April 25.

Since the transplant she has been thriving, Susan said. She had trouble after the first cancer with gaining weight because it hurt for her to eat, she said. This time Julia is on a feeding tube. She eats whatever she wants throughout the day, and gets a feeding through the tube, along with pain medicine, at night, Susan said. There is no timeline for how long she will be on the tube, but doctors want to see her maintain and gain weight, Susan said.

Julia has been out of the hospital for about two and a half months, but still goes to get checked out once a week. The first 100 days, doctors watch very closely, Susan said. So far, Julia is doing great and the Brokaws are getting ready to go back to Arizona at the end of the month.

“I think that they believe the bone marrow transplant has worked, but there’s a 50 percent chance she’ll relapse,” Susan said.

The whole experience has been traumatic on Julia. She grew very self-conscious when she lost her hair, and wouldn’t go out without a hat, Susan said.

A mother’s love led Susan to offering to shave her head also, but Julia didn’t want her to because she enjoyed playing with her mother’s hair. The Brokaws recently ordered Julia a wig of her choice that looks like Dora the Explorer’s hair, Susan said.

Also, to help Julia get through the tough times, the Brokaws would always talk about home, and how they would redecorate Julia’s room when they got home, which provided a sense of comfort and a positive attitude that everything would be OK, Susan said.

In addition to the emotional and physical pain, the ordeal has also caused a great of financial distress for the family. It’s co-pay after co-pay, and there are so many things that insurance doesn’t cover, Randy said. They had to fly Susan and Julia first class because of germs, they needed a rental car while they were in New Jersey, and Julia needs to eat organic foods, which are more expensive, he said.

There is also a loss of wages for time taken off, he said. Plus, the feeding tube isn’t covered and there will be numerous co-pays for occupational and physical therapy, he said.

“You get so wrapped up in the medical part that you forget about the financial,” he said.

“You’re hit with that, and it’s like a punch in the stomach,” Susan said. “It’s like everything is $1,000.”

The family has been working with Children’s Organ Transplant Association [COTA] in an effort to raise money. The organization works with families to help fund-raise money. All of the money goes to patients, and if people make donations to Julia and she doesn’t need all the money, the leftover funds will go to another patient who does, Randy said.

To make a donation, log on to www.cota.org, type Julia Brokaw into the search engine and click on “make a contribution.” To find out more about Julia or to get updates on her condition, log on to www.brokaws.com. For now, the family is looking forward to going home to Arizona where they plan on spending the next two years until everything calms down. They then plan to move back to Jersey, where they will be surrounded by friends and family, Randy said