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Brenna's Battle

Organized by: Deb Storm

Deb's Photo
 

Day 100 Celebration
December 25, 2016

Brenna celebrated Day 100 post-transplant on December 15th. This is a big day for bone marrow transplant patients! Her bone marrow biopsy that See More

THE STORY:

Brenna is 17 years old and a senior in high school. She is bright (consistently on the honor roll), musical (plays the violin and LOVES listening to Justin Bieber), LOVES playing volleyball (they travel all over the country playing tournaments), thoughtful (has donated her hair to Locks-of-Love three times), and helpful (volunteers for helping new kids in school). About 2 ½ years ago she was diagnosed with aplastic anemia, which is a rare blood disorder where the body stops producing enough new blood cells. In most cases the cause is unknown and Brenna’s case is one of those unknown. In the beginning of her diagnosis she underwent many blood transfusions to stabilize her body. Sometimes the body can restart itself and begin rebuilding its cells but, unfortunately, Brenna’s body was not doing this. So in July 2014 they did a treatment called ATG. ATG is an immunotherapy treatment that works by killing specific cells in the immune system called T-lymphocytes, or T-cells. These are the cells that are attacking the bone marrow stem cells in aplastic anemia patients. With the T-cells killed this allows the patient’s own bone marrow to rebuild its supply of bone marrow stem cells causing their blood counts to go up. This serum was given to Brenna via IVs over the course of five days with each day lasting between 6-10 hours. The ATG serum is created by injecting human white blood cells into a horse and then extracting the antibodies produced. Because Brenna is allergic to horses this triggered an asthma attack that made it very difficult for her to breath plus she broke out in HUGE hives when receiving her treatments via an IV. Luckily she was in the hospital for this entire procedure and they were able to slow down the drip while they administered additional medication via her other arm IV to counteract the allergic reactions. But she endured this for five straight days! After this initial treatment, the plan was to follow up for a year with additional medication taken daily orally in addition to a monthly treatment of an inhalation therapy administered during her check-up visits at the hospital to help prevent pneumonia since her immune system was so weak. Unfortunately, her blood counts were not back to normal so they continued this process checking blood counts every month. While taking this medicine she had to drink massive amounts of water to be sure and flush the medications through her kidneys as it is hard on the kidneys and can cause kidney failure. After 1 ½ years of taking the medicine, her kidney function was beginning to decline to the point where they needed to stop taking the medicine. Another bone marrow biopsy was performed to check her functions and a “new development” was detected. Because it had never shown on any of her prior biopsies (she had had three biopsies prior to this one) they waited one month and redid the biopsy. This time the “new development” had increased from 1% to 4% meaning the bad cells were multiplying. They immediately moved into bone marrow transplant mode as they wanted to get the procedure done while she was still strong. It had been determined that her only sibling, Jace, was a perfect match as her donor. However, with the new development they had to do genetic testing to determine if the cell change was a genetic disorder. If it was, then Jace would no longer be able to be her donor as she could develop the same thing down the road (and Jace would also be at risk for this happening). Praise God the gene change was not a genetic issue and Jace was cleared to be her donor! Now not only is Brenna making multiple trips a week to the Children’s hospital about an hour away but so is Jace. He received shots to increase his development of stem cells. He had tubes placed into each arm and spent six hours a day for four days flat on his back (in hospital as out-patient) where they removed his blood out of one tube, ran it through a special machine where it separated his stem cells from the blood, stored his stem cells in a bag and returned the original blood (minus the stem cells) back into his body through the second tube. Every day he received additional shots to increase his productions which made his joints very painful. His comment, ”This is nothing compared to what Brenna is having to go through.” Brotherly love is awesome! Thankfully as soon as they stopped the shots he felt much better. Today, August 29th, Brenna has been admitted to Children’s hospital where she will stay for approximately 6-8 weeks. The chemo treatments will begin on Tuesday and run for seven consecutive days. During this time we ask for additional prayers for strength for the family. The first of three different kinds of chemo is so strong that Brenna will be required to shower every 3-4 hours. If left on her skin any longer the poison emitting through her sweat will actually give her 2-3 degree burns. They will wait one day after completing the chemo treatments. On Thursday, September 8th , Jace’s stem cells will be given to Brenna through a procedure very similar to a blood transfusion. They are only able to inject a minimal number of stem cells so that they will attach to her bone marrow and begin to multiply. Her hospital stay will depend on how long it takes her body to reproduce these cells to a stable level. Once released from the hospital the journey is far from over. It will take months for her body to build up enough healthy cells to be considered safe. She will remain confined to her home for many months after returning home and visitors will be closely monitored. Because of Brenna’s extremely delicate immune system, when she returns home everything that is over four years old must be replaced. So they have had to replace the floors throughout their house, their furniture, bathroom vanity, her mattress and bedding, paint, etc. The bone marrow transplant procedure alone will cost over a million dollars! Add in the extra procedures and the already 2 ½ years of doctor visits, medicines, tests, gas back and forth to the hospital for check-ups for years, redoing their home ….. the expenditures are overwhelming and they could use our help! Please help by donating on this fundraiser page. Any amount is greatly appreciated and no amount is too small! The funds will go directly into an account that is only accessible by Brenna’s parents. They will be able to deduct in numerous small amounts or as one final donation; the choice is theirs. As a donor, you will be given the opportunity to pay for the credit card transaction fee or you may have it deducted from your donation amount. I plan to keep this fundraiser open for at least a couple of months and probably more so if you want to make multiply donations that better fit your budget, feel free to do so. While many people will see this fundraiser page on Facebook under Team Brenna we ask that you please share this fundraiser page on your personal Facebook page as well to get maximum distribution. If you own a business, print it and post where other people can read Brenna’s story and donate if they feel compelled to do so. Just make sure to give them the link where they can reach her fundraiser page. “Each one must give as he has decided in his heart, not reluctantly or under compulsion, for God loves a cheerful giver. 2 Corinthians 9:7.”

$5,850

 

23% Raised of $25,000 Goal

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  • Mitchy Leinen, Mike Bender and Eli Piersel

    $50

  • Matthew Morgan

    $250

  • DAVE FISHER

    $500

  • Lori Walker

    $250

  • Shannon & Gary Zuelke

    $200

  • Judy Sealock

    $100

  • Kelly King Wagner

    $100

  • Colette Theel

    $50

  • Joanne Pope & Buster Watson

    $400

  • Anonymous

    $50

  • Richard Eaton

     

  • Anonymous

    $25

  • Waterman Family

    $100

  • Penny Weifenbach

    $500

  • Dave Fisher

    $500

  • Robert Ulrich Family

    $250

  • Adriana and James Walton

    $50

  • Lori and Madison Rose

    $50

  • Anonymous

    $50

  • Jenna

     

  • Judy Cousin

    $25

  • Kelsey and family

    $100

  • Patty and Barry Serlis

    $250

  • The Hemstreets-Hana and family

    $50

  • Dana Strotheide

    $50

  • sao/rao Pentwater, Michigan

    $100

  • anonymous

    $25

  • Emily and Family

    $100

  • Anonymous

    $100

  • Anonymous

    $50

  • Todd & Kelley Ross

    $100

  • Madi J

    $100

  • Adrienne Jacobi

     

  • Bob and Deniece Curtis

    $50

  • Greg and Amy Martien

    $50

  • Anonymous

    $100

  • CTC

     

  • Renay McGinnis Pultz

    $100

  • Lori Walker

    $250

  • Kelly Wagner

    $50

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Organized by

Deb Storm

This is a direct to organizer fundraiser.

Donor Comments

Kelly Wagner

Kelly Wagner

DONATION: $50

1 year ago

Lori Walker

Lori Walker

DONATION: $250

1 year ago

Renay McGinnis Pultz

Renay McGinnis Pultz

DONATION: $100

1 year ago

CTC

CTC

In Honor of Deb Storm 2 years ago

Anonymous

ANONYMOUS

DONATION: $100

2 years ago

Greg and Amy Martien

Greg and Amy Martien

DONATION: $50

Love you guys most! 2 years ago

Bob and Deniece Curtis

Bob and Deniece Curtis

DONATION: $50

2 years ago

Adrienne Jacobi

Adrienne Jacobi

Hi Brenna, It's been a long time since pre-school but those were fun days! I wish you the best. 2 years ago

Madi J

Madi J

DONATION: $100

2 years ago

Todd & Kelley Ross

Todd & Kelley Ross

DONATION: $100

2 years ago

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