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Author: addisjourney

Addi was diagnosed with Stage 4 High Risk Neuroblastoma Cancer on August 18, 2019 at the age of two. She has endured many rounds of chemo, immunotherapy, tumor resection surgery where she also lost her kidney and adrenal gland, radiation and a clinical trial treatment at MSK in New York ( for 1-1/2 years) when her family was told there were no more options for treatment after she went into liver failure and almost died. Addi now has NO evidence of disease and completed 890 days of treatment on January 26, 2021. She will continue her journey as she has a high rate of relapse with scans every 3 months in Atlanta and at MSK in New York City for the next two years. During this time Leanne (LaLa), Addi's mother, has written two books. One book is the story of Addi's journey with many highs and many lows but all done in faith that she would be healed. The other book is a 30 day devotional book of the devotions that LaLa wrote and published on her blog each week during this journey. Leanne is working on her 3rd book and will have it published by the end of 2021. As an author, blogger and advocate, LaLa wishes to bring hope, awareness and be a resource for others that may be going through the same journey with their child as she has traveled with Addi for over 2-1/2 years. Addi has lived with LaLa and WaWa since she was 15 months old and is biologically Leanne's niece. Leanne and Warren adopted Addi August 1, 2019 and officially made her their daughter along with their other adult children.....Amy, Emily, Austin married to Marlee, Alexis and Seth. She is the aunt to the newest member of the family....Baby Bentlee! Addi is followed by people all over the world as she has overcome many obstacles in her short life. Her story is one filled with lots of love, faith and hope! We continue to blog about her story to bring awareness to childhood cancer, to bring hope to others who are going through this unthinkable journey, to be a resource and to share the faith that we have in God as he healed Addi in a miraculous way! Addi and LaLa have made it their mission to advocate for Childhood Cancer and to help other organizations in their efforts to help the cancer community. Addi has been featured with the Atlanta Ronald McDonald House campaign, The Rally Foundation for Childhood Cancer, CURE Childhood Cancer, Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Beads of Courage, Make a Wish Georgia, Little Miss of America, Love Beats Cancer, along with others.
Day 3

Day 3

Day 3………….. I apologize for not posting here on the blog last night.  I posted to Facebook and then crashed.  It was a long, tiring day.  I hope to update more later in the day.  Addi is still sleeping and the doctor has not made rounds.  Have a blessed day! Here is my Facebook post from yesterday: Last night Addi went to sleep around 6:00pm. I expected her to wake up after about an hour nap but she slept until…

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Chemo/Immunotherapy Day 2

Chemo/Immunotherapy Day 2

Chemo/Immunotherapy Day 2……….Addi has had a good day so far.  This morning she was even running around in the hallways.  We ran about 4 laps!  It was the sweetest and cutest thing ever.  I couldn’t even get a picture trying to keep up with her.  She had chemo this morning and that ended around noon.  They started the Morphine pump around 12:00 and the immunotherapy started around 12:30.  She still has about 4 more hours of Immunotherapy so praying hard…

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CHEMO, DAY ONE

CHEMO, DAY ONE

CHEMO, DAY ONE…… Well, day one of chemo is complete.  We started out having a great day and I thought we would get through the day without sickness or any side effects and then a couple of hours ago the vomiting started.  Vomiting startles her and she does not understand what is going on.  I HATE when she gets sick like this.  I can see the fear in her eyes and it is awful.  I told the nurse about 30…

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It’s that time again

It’s that time again

It’s that time again…… First I would like to tell you thank you for all of the response I received from the last post about the comments that were made.  I was overwhelmed with the love and support I received and I THANK YOU from the bottom of my heart.  You made my heart feel so much better and I appreciate the support so much.  Also, thank you to every person that sent Addi a Valentine’s card.  She had so…

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A little something from my heart

A little something from my heart

A little something from my heart……. I just wanted to share a little bit from my heart after a comment that was left on Addi’s page yesterday.  First, it was not negative toward me, my family or Addi but it was a negative remark regarding my faith.  I am a Christian and I am not ashamed to say that I am.  I love and respect all religions and walks of faith.  I know everyone does not believe as I do…

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Let’s get out and play

Let’s get out and play

Let’s get out and play…… Addi has been feeling better the last couple of days and then this morning started throwing up again.  Not sure why she will go a few days and then it starts all over again.  She has been real whiney today and has slept a lot so I hope this is not the beginning of something! She has regained her appetite and is eating so good.  I always worry about her not eating but it is…

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World Cancer Day

World Cancer Day

World Cancer Day…… Today is World Cancer Day….a day that brings awareness of cancer, and to encourage its prevention, early detection and treatment. Of course this day is a little more prevalent in our lives more than ever and my desire to find a cure is below! We must find a cure for Addi and all the children and adults fighting this beast! There are many great organizations such as the Rally Foundation for Childhood Cancer Research and CURE Childhood Cancer that are leading…

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Friday has been a better day

Friday has been a better day

Friday has been a better day……. Addi has felt better today.  She is ill as a little hornet but she has not had a fever the past few hours and her pain seems to be minimal.  She is pretty swollen in her little face but that will go away in a few days.  Besides being a little hard to get along with right now, she is doing so much better today.  She is feisty, sassy and a ball of independence…

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Day 4 and Miserable

Day 4 and Miserable

Day 4 and Miserable…… It seems like everyday this poor baby has experienced a different issue. Yesterday was pretty miserable. She ran a high fever that hovered between 103-104 and slept most of the day. No vomiting though! (Have to find all the positives we can!) To add to her misery she had urinary retention and ended up needing to be catheterized and that was NOT fun! Poor baby had over 300 cc’s of urine they drained from her bladder….

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Rough Night

Rough Night

Rough Night…….I am sorry I have not been able to respond to all the messages this morning asking about Addi.  It was a rough, rough night and we finally got a little sleep this morning.  Addi is having a rough time with the immunotherapy.  She vomited several times through the night where we had to wash her blankets and stuffed animals.  Yeah, nothing like washing clothes at 2 am!  She came in with a cough that started before we left…

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Immunotherapy begins today

Immunotherapy begins today

Immunotherapy begins today……Addi was admitted into the hospital yesterday to begin two cycles of chemo and immunotherapy in hopes of shrinking her cancer so she can go to the next steps of treatment which is stem cell transplant.  She will begin immunotherapy today at 2:00 and it will take 10 hours to infuse. She will have this everyday this week. She will be on a continuous pain pump for the 10 hours while getting the immunotherapy called Unituxin. The doctor says…

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New Treatment Plan

New Treatment Plan

New Treatment Plan……I received a call from Addi’s doctor yesterday regarding her new treatment plan.  They have decided the best route right now would be to do at least two rounds of Chemotherapy along with Immunotherapy.  She will have scans after chemo/immunotherapy and if needed she will begin MIBG Radiation.  They are setting up an appointment with a doctor in two week that does MIBG Radiation and we will discuss radiation therapy if that is needed.  Immunotherapy is something she…

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Fun day and Result day.

Fun day and Result day.

Fun day and Result day……       What a fun, fun time we had with our kids and Addi on Saturday. Warren and I are so blessed with amazing children that come together to love and support our sweet girl during this time as we love Addi back to good health. They have embraced her and loved her like nothing I’ve ever seen. It makes my heart just melt seeing each of them interact with her (yes, including our…

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Busy Week for Addi

Busy Week for Addi

Busy Week for Addi….. It has been a long, busy week for our Addi girl.  She was put to sleep twice this week and it is the most nerve racking thing ever.  The doctor lets me hold her until she is asleep (which is within seconds) and oh my does it kill my heart.  One minute she is crying, the next minute she is out.  She had her MRI on Wednesday and full body scan yesterday.  They had a little…

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New normal

New normal

New normal…. Addi had a pretty bad sick spell this morning.  The vomiting is so unpredictable and just when you think it is over, it starts back up again.  We are going on 2 weeks of nausea and vomiting.  Her appetite is very poor but she loves PediaSure so we make sure she drinks at least two of those per day to get calories and the vitamins she needs.  It hurts my heart knowing that the sickness has become part…

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Home Sweet Home

Home Sweet Home

Addi’s Journey:  Home Sweet Home! After 6 long days in the hospital our girl is finally home and eating! Tonight she even ate CABBAGE!  She has always been a great eater but since she got sick, she has been a lot pickier about the foods she eats.  I have been told that the chemo completely changes the way food tastes and that must be true because some of the things she always loved to eat, she now won’t touch.  It feels so good to…

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Background on treatment

Background on treatment

I can’t wait to see that smile and that sparkle again! So I am going to try and do a brief history to get the blog up to date so we can just post what is going on currently, going forward but I just want to make sure that anyone that is new to Addi’s Journey can know the history to date.  So I left off where she had her first chemo that started August 30, 2018.  She has just…

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HOW TO GET EMAIL NOTIFICATION

HOW TO GET EMAIL NOTIFICATION

HOW TO GET EMAIL NOTIFICATION So I am new to this blogging thing but I discovered if you want to get notifications when a new blog is posted you must hit the SUBSCRIBE button at the top of the page under Addi’s Journey and enter your email or at the bottom of the page where it says “Get email notifications”.  You will be directed to another page to enter your email then click on “Complete Subscription Request”.  You will get…

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Welcome to Addi’s Journey

Welcome to Addi’s Journey

ADDI’S JOURNEY Welcome to Addi’s Journey blog page.  Addi is a beautiful 2 year old little girl that was diagnosed with Neuroblastoma Stage 4 High Risk Cancer on August 19, 2018.  This blog is about a little girl and her families journey through this horrific journey that so many other families are facing each day. I started Addi’s Journey Facebook page after Addi’s diagnosis to update family and friends in one post.  It was so overwhelming trying to update everyone…

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