Help Spread Hope with Addi's Journey & Brave Gowns

$ 25.00

Addi has been in and out of the hospital since 2018, so she knows first hand the importance of comfort and keeping hope. She loves her new Brave Gowns and wants other children to receive them too, so they can feel strong and brave like her. Addi needs your help to gift them to her friends at Sloan Kettering & the Children's Hospital of Atlanta. Together they treat almost 1,000 patients a day. Our goal is to make it as magical as possible and gift every child a Brave Gown! Thank you for your support and helping spread smiles. -Addi & The Masten Family

Addi's Story

On August 19, 2018 Addi was diagnosed with Neuroblastoma Stage 4 High Risk Cancer after a visit to the ER where her parents thought she had appendicitis. Addi had a large tumor on her kidney that also incapsulated her adrenal gland. The cancer had metastasized to her skull, both arms, hips, pelvis and a small spot on her lung. Over the next 6 months Addi has went through intense treatment that consisted of 7 rounds of chemo, 2 rounds of immunotherapy, tumor and kidney resection and 12 rounds of radiation. After her fifth round of chemo an MIBG was performed and it was discovered that Addi was not responding to chemo and her tumors were too large for her to begin the next step in the protocol which would have been stem cell transplant. In hopes of getting her to stem cell transplant, she received 2 more rounds of chemo along with immunotherapy to shrink the tumors. The protocol for stage 4 neuroblastoma would have been for her to receive 2 stem cell transplants, radiation then 6 months of immunotherapy.

Addi went into acute liver failure after her 7th round of chemo/immunotherapy and was in critical condition for weeks in ICU fighting for her life. During this time palliative care was brought in and we almost lost her life to the complications of liver toxicity that was a result of the chemo and immunotherapy treatment. An MIBG scan was performed while in the hospital and it showed that she had no evidence of disease.  After 47 days in the hospital Addi was released but the family was told that she had no other options for maintenance treatment to keep her disease eradicated because of the severe damage to her liver. 

Addi has made a miraculous recovery and was accepted into Memorial Sloan Kettering’s trial study of HU3f8 and will began the next steps in this journey on August 19……the one-year anniversary of her diagnosis. After 3 rounds of the 3f8 treatment (she was supposed to have 5-7 rounds), Addi’s doctor told us that she could no longer do the antibody treatment because her body had built an immunity to it and basically her body was rejecting the treatment.  Once again another set back but we continued to have faith in Addi’s healing regardless of the set backs. Addi began the vaccine trial treatment in New York January 2020 and had her last treatment in January 2021. Unless she relapses, she will have scans every 3 months for the next two years to check the status of her disease. She has experienced many set backs along the way but Addi is a miracle and continues to beat all odds!  We will continue to have faith as God restores her body back to complete health. We pray daily that Addi does not relapse and that she will continue to show No Evidence of Disease as her 890 days of intense treatment ended on January 23, 2021.

Addi has a 60-80% chance of relapsing so she will continue to be monitored closely by her team of doctors in Atlanta and in New York. She will have MIBG full body scans, MRI and blood work every 3 months for the next two years to check for reoccurrence of disease. Addi is currently 5 years old and in kindergarten. She is happy and thriving after 3 years of intense treatment. We continue to believe God in her complete healing and have ALL faith that she will not relapse and live a long, happy life! We move bravely onward as we continue to fight for Addi and believe God for her continued miracle of LIFE.

To learn more about Addi's incredible story please go to: 

If you have any questions, please email us at info@bravegowns.com

WHY ARE BRAVE GOWNS SO IMPACTFUL?

We are so enthusiastic about our gowns because they are not your standard hospital gowns! Brave Gowns have gone through extensive Clinical Pilot Programs in the children's hospital network and were created with the input of a transplant team at Lurie's Children's Hospital. Not only do they have fun prints that cover the entire front like costumes; they are made out of an amazingly soft fabric that resembles your soft, favorite t-shirt, or nightgown! They have IV access on both sleeves, access to chest ports and heart monitors. No more having to worry about a draft or the back opening. While the gowns are softer then you can even imagine, they meet all hospital standards and hold up to industrial washings competing with gowns being offered currently.  Brave Gown is a high-quality gown, that helps eliminate infections in chest port and makes it easier to access every part of a patient's body! 
 

WHEN ORDERING FROM THIS CAMPAIGN, IF YOU CHECKOUT DIRECTLY THROUGH THE WEBSITE, YOU WON'T BE ASKED FOR A SHIPPING ADDRESS. ALL GOWNS WILL SHIP DIRECTLY TO OUR FAMILY FOR US TO DELIVER PERSONALLY. THANK YOU!

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