Honored Kid

Amelia G.

Age 13
Amelia G. Kid Photo

Location

Ada, OH, US

Diagnosis

Neuroblastoma

Date of Diagnosis

January 2015

Status

In treatment

Treated At

Nationwide Children's Hospital

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My Story

On June 1, 2015 we were heading to Nationwide Children's for a routine MRI...we promised Amelia that it was no big deal....just a quick picture and we would be going home....... She was only 4...she had already been through a surgery in January to remove a cancerous tumor that was resting on her aorta and spine....we were told it was a Glioneuroblastoma...."95% of the time these don't come back...she's going to be fine." I will never forget the looks on the oncologist and surgeon's faces after they looked at Amelia's scans on June 1, 2015. It was a look of horror...not only was the tumor growing back, but had metastasized to her spine, pelvis, shoulder and skull. All they could say at first was, "I'm sorry"....they were shocked. She now had Stage 4 Neuroblastoma. We had to tell Amelia that day that she wasn't going home. Beau and I had to take turns leaving the room because we couldn't hold it together. I went out to the car and just screamed...I called my dad and remember telling him that I felt too weak to even pray. Thinking and typing about this anniversary makes me cry...this was the beginning of a very difficult journey for Amelia...for all of us..... A year! She still screams when we do her weekly bandage change on her central line...her brothers are use to the screams now. She went through five rounds of chemotherapy...2 chemos at a time...different ones each round. She went through another surgery to remove the tumor again, ended up with a chyle leak and spent twice as much time in the hospital. She was supposed to go to transplant on November 4, 2015 but she still had too much cancer in her body. We were then told that she didn't respond to the first five rounds of chemo and they were going to try something else. If they sent her to transplant in that condition, they guaranteed us that the disease would progress...she would get worse. They then tried two new chemos in combo with immunotherapy, and after 4 rounds, we had our first victory....there was enough cancer gone to go to transplant! On March 9, Amelia received her transplant after being admitted on 3/1 so they could infuse two very powerful chemos to kill off all of her cells prior to transplant....we were there for 32 days. Then, Amelia went through 12 rounds of radiation at OSU....she was sedated every day. She is currently going through 6 months of immunotherapy in hopes to train her body to fight off the cancer. We have scans coming up this month and plans for Amelia to ring the bell in September before she begins her last round of immunotherapy in October. Then, she will be in a clinical trial, taking oral meds for 2 years (DMFO), for continued efforts to prevent relapse. Amelia has been through more than anyone I know. I have been with her through every injection, infusion, surgery, biopsy, blood draw, procedure, bandage change. I can't count how many times she's thrown up, had diarrhea, had a fever that caused us to rush her to the hospital for an admission. She's hasn't slept in her own bed for 17 months because she's afraid....Beau and I have gained weight, our blood pressures are up, we cry a lot...the fear of the unknown has definitely effected us...we will worry for the rest of our lives. The boys have fears that they never had before even though we have tried to keep things as normal as possible and focus on them as well. She's missed so much this past year...she's matured and grown and can tell you anything about her meds, scans and treatments that you want to know. She counts down her days each week of when her next bandage change is or how many more shots I have to give her at night. She's tired of getting her central line flushed every day, doctors appointments, leaving her Daddy and brothers for days at a time, taking tons of meds twice a day, wearing a mask wherever we go, not being able to swim or take a bath. Thankfully, The Make A Wish Foundation is sending us to Disney after Amelia's central line is pulled. This has given the children a goal and has been a good focus for all three of them. We will be TOGETHER...NO HOSPITAL...and Amelia will be able to SWIM (that's all she talks about)! We never forget our blessings through out this. We've met a lot of beautiful people...there are so many people praying for and supporting us...loving us....THANK YOU! We couldn't have survived this without you!! We have a loving marriage and we are a stronger family! We are stronger spiritually...I've always been religious...always loved our God...but I feel a closeness with him that I've never felt before. Thank you for continuing to pray for Amelia and our family. This journey isn't over yet. I pray that when her treatments are done, we can keep our promise to Amelia that she will be done and will never have to go through this again. Please God let her move on with her normal life...she just wants to be like "the other kids." A lot of people use the term "Cancer Sucks"...we've always stayed away from that saying and tried to use a more positive approach. But in reality, cancer does not just suck....It's DEVASTATING and our lives are forever changed! God Bless you all! Christina (mom) https://www.youcaring.com/team-amelia-foundation-453167 https://m.facebook.com/Ameliathebrave/

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