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 was immediately admitted to the hospital where testing began to determine the extent of her disease.  Addi had a large tumor on her kidney that also incapsulated her adrenal gland. The cancer had metastasized to her skull, both arms, both hips, pelvis, lymph nodes, bone marrow and a small spot on her lung. For high risk stage 4 Neuroblastoma, the protocol treatment consisted of 5 cycles (25 chemo treatments), tumor resection, 2 stem cell transplants and 6 months of immunotherapy.  She began her first chemo treatment on August 30, 2018.  Over the next 6 months Addi went through intense treatment that consisted of 7 rounds of chemo and 2 rounds of immunotherapy.  Her tumor was removed on December 5, 2019 but due to the extent of the cancer that had involved her kidney, it was removed as well along with her adrenal gland and several lymph nodes. 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 two stem cell transplants. In hopes of reducing the size and extent of Addi’s cancer and to get her curry score below a 4 so she could begin stem cell transplant, she received 2 more rounds of chemo along with immunotherapy. On February 23, 2019 the last day of the 7th round of chemo/immunotherapy, Addi went into acute liver failure.  She was rushed to the PICU then transferred to Egleston Children’s Hospital where they had a hepatologist who specializes in the liver.  She was in critical condition for weeks in PICU fighting for her life. During this time palliative care was brought in and we almost lost her to the complications of liver toxicity which they believe (but still not 100% certain caused her liver failure) was a result of the chemo and immunotherapy treatment. There were many ups and downs during this time.  She had surgery to place a stomach tube to drain the large amounts of fluid that the VOD caused to accumulate in her stomach which caused breathing difficulties along with many other life threatening effects.  She began to have multi-organ failure and her outlook was not good.  She began to improve but was not eating or drinking and was receiving nutrition through an NG tube.  She lost her ability to walk and do simple tasks and PT/OT was part of her recovery.  An MIBG scan was performed while in the hospital on March 22 and it showed that she had no evidence of disease. The best news we had heard since August 19, 2019! After 47 days of fighting for her life, Addi was released from the hospital but the family was told that she could not continue maintenance treatment and at that time had no other options to keep her disease eradicated because of the severe damage to her liver.

Because Neuroblastoma stage 4 high risk cancer is such a beast, reoccurrence rate is so large and survival rates are not favorable, the family began looking for other options for treatment now that stem cell transplant and immunotherapy were off the table due to her fragile state and liver damage.  LaLa researched and found a trial study specifically for Neuroblastoma in New York that was like none other in the world that had no liver side effects and was saving kids lives.  After much testing and trips to New York to talk with the team there, Addi was accepted into Memorial Sloan Kettering’s clinical trial study of HU3f8 antibody and began that treatment on August 19, 2019……the one-year anniversary of her diagnosis. Coincidence….I don’t think so!  After 3 rounds of the 3f8 treatment (she was supposed to do 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.  This was not the news our family wanted to hear but Addi will begin a new treatment.

Next step is the vaccine trial treatment in New York beginning in January 2020 where she will travel back and forth to New York over the next year for this treatment.  Thankfully these treatments are done as outpatient and consist of an injection in the leg and scans every 2 months.  We have been told it is very painful and feels like hot lava going into the leg but after the pain and swelling subside, she should have no other side effects besides fever, possible hives and pain. We pray that this is Addi’s cure and final steps in treatment.  Neuroblastoma has a huge reoccurrence rate so we pray this treatment eradicates all cancer cells from Addi’s body so that she never has to endure another treatment and to ensure this cancer never returns. We have been told she has a 60% chance of the cancer reoccurring but we BELIEVE and TRUST God that this will never happen. If you have more questions about Neuroblastoma, please go to this link and most questions should be answerd. Neuroblastoma FACTS

Besides cancer, Addi has experienced moderate to severe hearing loss in both ears due to the chemo Cisplatin that she was given in the beginning of her treatment.  The process with the ENT and audiologist has began and she will be getting hearing aides in April 2020.  She will then go to speech therapy to help her develop those sounds she has been missing.  There are many potential side effects from the treatments and she has many specialists.

I get hundreds of messages a week and it is so hard to answer them all.  I try to cycle through them and get to a few as I can but life is so chaotic, I just can’t answer them all.  These are a few questions that are asked frequently……

FREQUENTLY ASKED QUESTIONS
-Addi is 3 years old and will be 4 in May.  She loves pink, her puppy Milo, singing, dancing (she takes ballet), eating ice cream, coloring and learning.  She is very intelligent and learning is one of her favorite things to do besides telling Princess Addi stories that she makes up herself.  Every story begins with “Once upon a time there was a little girl named Princess Addi who lived in a big piiiinnnnnkkkk castle!”  The cutest stories are told and I hope to write some Princess Addi children’s books one day.

-She does not know she has cancer.  We have never told her she is sick but only will say we go to the hospital to make her better.  As she is getting older, she is realizing and understands more and more everyday but we keep everything as positive as we can.  We do not want her to have the mentality of being a “sick kid” therefore we have chosen not to tell her how sick she is.  I don’t think she would understand right now anyway.  She is happy regardless of all she has been through and you would never know all she has and continues to endure.  She loves life and just enjoys her days living life as Princess Addi.

-Addi came to live with LaLa (Leanne), WaWa (Warren) and Texas (Alexis) in November 2017 after being removed from her home and placed in foster care.  LaLa is Addi’s aunt.

-For almost two years Addi was in foster care with LaLa and WaWa but finally on August 1, 2019 we made it official and adopted Addi.  She officially became our daughter and joined our Masten clan that includes 5 other grown siblings.

-Warren and Leanne have adult children ages 22-32. Amy, Emily, Austin who is married to Marlee, Alexis and Seth.  Addi also has an adult biological brother, Zach.

-Addi is LaLa’s brother Greg’s biological daughter.  Yes, it has been a difficult situation but yes we have worked it out.  We don’t talk about this part of our journey much on social media.  He does get to see Addi and continues to have a relationship with her.  This is just a private family situation that we work out amongst ourselves in private.  NO other questions will be answered about bio mom or dad…..thank you!  It is not my place to tell their stories and circumstances surrounding my family adopting Addi.

-We do not wish to take Addi to St. Judes at this time.  This is one of the most frequent emails.  St. Judes does not have the treatment that MSK in New York has.  It is the ONLY one of its kind in the world and has been very successful.  I know it is a great hospital but Addi is at the best hospital for the type of cancer she has.

-LaLa quit her full-time executive job in February 2019 to stay home and care for Addi during treatment.  LaLa is a professional photographer (yes, that is why there are so many photos of Addi) and tries to do photoshoots when she is able to bring in some income for the family.  WaWa has been a paramedic in our hometown for 30 years.

-Addi does not take the THC, CBD or any other supplements at this time because of the trial study she is participating in.  I appreciate all of the information that is sent about supplements, alternative treatments and other options but at this time we will follow the doctors plan and not interfere in that unless absolutely necessary.  It is working and we will keep these close in the event we need them.

-Follow Addi’s Journey on Instagram:  addisjourney      https://www.instagram.com/addisjourney/

–Address to send cards to Addi:  Addi’s Journey c/o Leanne Masten P.O. Box 99 Toccoa, GA 30577

–Gift Cards when traveling:  Many have asked about gift cards for travel.  The gift cards that we could use most during travel are UberEats, GrubHub, Walgreens (where we shop for food and other necessities while in New York) or any major food chain gift card.  You can find almost all major chains are in New York…. Dominos, Starbucks, Dunkin Donut, Red Lobster, Bubba Gumps, Ruby Tuesday, Olive Garden…just to name a few!  Those can be mailed to the address above or if purchased online, they can be emailed to [email protected]

FUNDRAISERS:

-We are not asking for anything but your PRAYERS for Addi but for those who have asked, you may donate at:
GoFundMe: gf.me/u/w96j6n
PayPal: [email protected]
Venmo: [email protected]

-To purchase Addis Journey t-shirts:  https://www.bonfire.com/store/addis-journey/

-To purchase Addi’s Journey 2020 calendar:  https://www.createphotocalendars.com/Shop/addisjourney

Our family has been blessed by Addi’s followers that have enabled Leanne to stay at home with Addi, to help with bills, travel and medical expenses.  There are no words to describe our gratitude.  We will pay it forward in the future in a big way!  Thank you for your support!

This is Addi’s story and the most frequently asked questions.  I hope this answers many of your questions.  If it is not listed here, we probably want to keep that part of our lives private.  So many have been curious about certain aspects of Addi’s life that we have chosen not to share with the public.  I hope you understand.

Addi has experienced many set backs along the way but she is a miracle and continues to beat all odds!  We will continue to have faith as God restores her body back to complete health.  This has been a long, hard road that is not over yet but we could not have made it through this time without the love and support from family, friends and strangers.  We appreciate everything that has been done to enable us to focus on Addi and get her through this difficult time…..there truly are no words to describe our gratitude. Addi’s Facebook followers have become family to us and we will continue to update and keep you up to date on her progress as long as you want to know about her.  We feel an obligation to the thousands all over the world who have prayed her through some difficult times to keep them posted on her progress….the good and the bad!

Much love and gratitude ~ LaLa