Honored Kid

Macie G.

Age 13
Macie G. Kid Photo

Location

Sandy, UT, US

Diagnosis

Osteosarcoma

Date of Diagnosis

February 2013

Status

In treatment

Treated At

IHC Sandy InstaCare Huntsman Cancer Institute Primary Children's Medical Center

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My Story

On Monday morning Macie woke with her leg hurting really bad. She had been having leg pain for a while, but only when it was chore time or bed time. I chalked it up to avoidance and sometimes growing pains because I would rub it and it would feel better. That morning it hurt bad enough that unknowingly to me, she took my cell phone and called her doctor's office and told them she needed to see the doctor because her leg was hurting. I found this out later that day. While doing P.E. at school she fell on her leg and was screaming that it hurt. Her teacher and the office thought she was being dramatic and told her she was not going to call home and to go back to class. After school she was complaining more than normal and when I told her I would take her to the doctor, she asked when and when I said in a little bit, she ran to get her snow clothes so she could go sledding. After her extended drama of the day, I told her to get in the car first and we would go to the doctor's. I told her that if the doctor said she was fine, she could not use her leg hurting as an excuse anymore. At the doctor's she was climbing all over the table and squirming around. The doctor was almost convinced that she was faking, but her instinct told her to x-ray her leg just in case. She told us that 1 in a million there wouldn't be anything there, but to be on the safe side she wanted to check. They took several pictures and then a short time later she came in the room and said there was definitely something (abnormal) (a word I have come to HATE) on her pictures. She took us back and showed us what her concern was. We went back to wait in the room while she called the radiologist. A short time later she came in and the whole aura of the room became very dense. She looked at us and said she had to give us the "worst case scenario". She told us that there might be a neoplasm. I had no idea what she was talking about. She got real quiet and looked right in my eyes and said, "cancer". The whole room turned numb. I think the floor disappeared at some point. She went out and called Primary Children's Hospital and spoke with their chief pediatric orthopedic oncologist. He said to get her up there ASAP. We had our 2 year old son with us, so we took him home and rushed up there. It is about 30 minutes away, but it felt like 30 hours. The whole way there I kept telling myself to wake up, but I wasn't sleeping :( The hospital took their own set of x-rays and a short time later the doctor came and pulled us out of the room and said she was very concerned about what she was seeing and that she was admitting Macie. That night she received the first IV of her life (which she HATED) in her left hand. That night we saw about 10 doctors that night. Mind you, we were admitted around midnight. The next morning the director of the Huntsman Institute came to see us. He said he suspected Osteosarcoma. He said he was going to do and MRI, CT Scan and then surgery, THAT DAY!!! Just yesterday she was at school and doing great and now she's having surgery??? The MRI came back very definite. They told us that they still needed to do a CT scan to see if her lungs were clear. Apparently if it spreads to the lungs that is very bad. She went into the operating room still sedated from her MRI. I had words with the surgeon outside of the O.R. and kind of threatened him to take care of my most prized possession lol, (I was kinda freaking out). We went back to her room to wait and quickly received a phone call from the O.R. that her lungs were clear!!! The doctor was so excited :D A short time later he came into the room and looked very glum. He told us that our baby for sure had Osteosarcanoma of her left distal femur and that she had fractured the bone that day. How in the world was she still walking??? He said the femur was affected from the hip to the knee and that she had a soft tissue tumor attached to the bone. He explained that they would keep her in surgery another hour and implant a port for her to receive chemo through. (keep in mind, this is still Tuesday!) They told me I could take her home that night if I felt comfortable. She came out of surgery in so much pain, they had to give her 7mg of morphine and 18mg of tordol (a stronger version of IB Prophen) to get her pain under control. She was vomiting constantly so I did not want to take her home. The next afternoon I felt comfortable taking her home. They set up a bone scan, audiology and oncology appointment back to back for Friday. We went home and had a relaxing night and the next day she was able to regroup. On Friday her bone scan showed that her tumor had not metastasized (YAY), her hearing is perfect and they drew blood through her port. They then explained that she would need to begin chemo that coming Monday (tomorrow ): So, in only 7 days she got hurt, was diagnosed, had surgery, a bunch of tests, and is starting chemo. They say she will lose her hair in 2-3 weeks. Saturday we got the whole family together and spent the day with her. I have 4 other children: a 16 year old daughter named Madilyn, a 14 year old son named Merrick, a 12 year old son named Maverick, Macie and Benjamin (different dad lol) I was insistant that I wanted a family picture before she lost her hair and I am shaving my head with her because she doesn't want to be bald alone. We went and bought her wheelchair that morning so we could transport her easier since she is no longer allowed to walk for fear of her breaking the bone and releasing the cancerous cells into her blood stream. We took her to a beauty salon where they washed her hair and curled it. I got my hair curled and my daughter had hers straightened. After being girls, we all went to PicCouture and the girl was so sweet and did individuals of all the kids, groupings, family and then several intimate pictures of Macie alone. Then we went to Build-A-Bear and she and her siblings make their "cancer comfort bears". Sunday (today) was spent with her best friend, her cousins and grandma. Dad and I went on what might be our last date for a while. Now I'm on my couch writing this watching her sleep on her bed which is now in the center of my living room so she is still included in life. The minutes keep clicking by no matter how much I pray they won't. We have 7 hours until we have to leave our lives as we know them behind and have her first chemo treatment. She is so very strong. She tells everyone she is going to war tomorrow. She is having a fight with cancer. She is getting "Pac-Man" medicine that will go eat the cancer in her leg. I told her I wish I would have it instead of her, but she yelled, NOOOOOO, and tells me that she hates cancer and wishes no one would ever have to have it. My little angel is only 4 feet tall and weighs a mere 49lbs. She is so small and fragile it breaks my heart! I have the most amazing family in the world who are working with this site to raise money to help with finding a cure so hopefully one day no parent will ever have to explain to their child that they have a horrible disease and that they will not walk, ride a bike, dance or a dozen other things for a very long time. Thank you for taking your time to read about my precious daughter and for helping to assist the doctors and scientists in helping our babies. Macie does have a Facebook page created by her older sister: Hearts for Macie if you would like to get to know her even more. Take care, and don't forget to smile every day!

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