Thursday, September 6, 2012

Miranda's Story

Miranda's Story
By: Tiffany Beamer

I would like to introduce you to an amazing little girl, my youngest daughter Miranda. I know, everyone thinks their child is amazing, and they all are. But Miranda has been through a lot in her short lifetime that has made her even more amazing to me. At three years old she was diagnosed with Ewing’s Sarcoma, a rare childhood cancer. Never in my life would I have thought that I would have a child battling cancer. That kind of thing happened to other people. But after a lump suddenly appeared on Miranda’s back and we started to do tests to find out what caused it that’s exactly what I was being told. I had about a week to start to get used to the idea as the test were ran and the words “mass” and “tumor” were used. I didn’t know how to react. Should I be angry, bitter, depressed, and hopeless or determined, strong, encouraging and hopeful?

For the first month of Miranda’s treatment she was in the hospital. The view from her room was the side of the Ingram Cancer Center building, more specifically the word “Cancer”. Day after day I would see that word, staring at me like an ugly monster, which is exactly what I think cancer is. Most of the time I handled all the changes in our life ok, there was too much to do everyday taking care of Miranda to let my mind wonder to the what ifs. But sometimes, when she was sleeping and the room was quiet, my mind did wonder and I would imagine the worst. When that happened I couldn’t keep all my emotions in check and the tears didn’t want to stop.

Each day brought new challenges. Learning new medical terms and procedures, talking to my three other children, finding time to eat, convincing my potty trained three year old that is was ok to go in her pull-up all were some of the first challenges I faced. Words like central line, ng tube, chemo, transfusions, and vomit bucket were part of a typical conversation for me. Life as I knew it had stopped and completely changed. When people say “normal” I don’t even know what that is supposed to be like anymore. I used to look away when I saw a little bald head. Now I walk up to them and tell them that my daughter used to have that same haircut. I have an instant bond to the child’s mother that only a cancer mom can understand.

As the rounds of chemo passed Miranda got sicker and sicker. She stopped eating, lost one third of her weight, her hair fell out as I brushed it, and the vomiting didn’t seem to ever stop. I counted one day, in a 12 hour period she vomited 17 times. Another day she had was sitting up in bed, I was washing my hands at the sink behind her and turned around to check on her. The sight of her backbones and ribs showing took my breath away. I thought if I didn’t see this myself I wouldn’t believe it. So I snuck over to the desk, grabbed my camera, and preserved that image for those who might not believe.

Sleep was hard to come by. I went back to the advice I was given as a first time mother, sleep when they sleep. But I wasn’t the three year old fighting cancer thinking that hospitals and IVs and feeling sick all the time were part of everyone’s life so sleep didn’t come easy and when it did come it wasn’t restful.

 So how do you handle a three year old in a hospital? That was another challenge.

When she was very sick all I could do was take care of her physical needs and cuddle with her. Unfortunately this wasn’t a booboo that mommy could kiss and make all better. But I could bring her puzzles from the playroom and color for her. Yes, she would be so tired that she didn’t feel like coloring so she would point to the part of the page for me to color and give me a crayon. I got very good at it. Puzzles were great too, smaller ones that could be done on the bed table. To this day Miranda can’t get enough puzzles. When she felt better, the hospital bed became a toy, there were so many buttons to push to make it move and turn the TV and lights on and off. And Miranda quickly learned when the IV pump started beeping to push the call button and inform the nurse. Now that was cute to see, her little voice answering the call, “I’m beeping!”

The first four months of Miranda’s treatment were awful. She just got sicker and sicker. There were times I thought the treatment would kill her. But the tumor was shrinking so I clung to that as good news and prayed that things would get better. December came, for most people that meant the excitement of the holidays, shopping, parties and such. For us it meant surgery. Very early in the morning four days before Christmas the transport team came to carry Miranda to prepare for surgery. She wanted me in the bed with her as we wheeled down the hall to the elevator. It turned out to be the longest day of my life. The surgeon got a flat tire on the way to the hospital so the surgery started later than scheduled. The pathologist asked for a little more tissue from around the tumor several times to make sure that all of the cancer was removed. Miranda also had a g-tube put in during the surgery. We had been relying on a tube through Miranda’s nose to feed her but almost every time she vomited it came out and putting it back in involved four people, three to hold her down, one to insert the tube.

Surgery was a turning point. Miranda got better and better, she gained back some of her weight. It would be four months after she was done with chemo before she got back to what she weighed before she was diagnosed. She was able to come home and only go to the hospital for chemo. Before surgery she was in the hospital all the time. After surgery she felt good enough to play, even wanting to go outside and swing on a nice day. We collected a nice variety of medical equipment and supplies at home. There were a lot of things that Miranda needed daily: feeding through her g-tube required constant supervision, her central line was flushed twice a day to keep it from clotting, the central line dressing was changed weekly, she had multiple medications, she was still vomiting and that often required clothing and bedding changes. I had three other children at home most days (we homeschool) and at home I didn’t have the help of the nurse or care partner to help with all the daily needs of having a child with cancer.

When Miranda’s treatment ended I was scared, would the cancer return since she wasn’t getting chemo to fight it? I felt guilty that she was a survivor. I had made so many new friends, other cancer moms, who had lost their child. I questioned why my child survived and my friend’s didn’t. Life is getting back to the way it was, I guess some would say normal. Miranda gets regular scans. She went through 15 months of physical therapy and had to wear leg braces. She will be followed by a cardiologist because of the late onset side effects of the chemo. But I will never be “normal” again, this experience has changed me. I want to scream from the rooftop and tell everyone that kids get cancer too. It has led me to be an advocate for all the children who are fighting cancer today and those who have yet to be diagnosed.

Today is a special day, one of those dates that you will forever remember like birthdays and anniversaries. Today marks 5 years since Miranda was diagnosed; September 6, 2007, will be engrained in my mind always as the date my daughter was diagnosed with cancer. This spring will mark another milestone in my daughter’s life. On May 15, 2013, Miranda will turn 9 years old. May will also mark her five year survivor status, a huge milestone in the cancer world. We are planning a big celebration at that time. But today, I look at her across the room and thank God that she is still here to hug and kiss and even fight with her sisters.

Ewing's Sarcoma
Survivor

4 comments :

Monicas Mom Musings said...

Beautiful girl! Thanks for sharing your story. So glad to hear she's doing so well now.

~just me~ said...

Amazing, awesome story of a beautiful little girl.....thank you for sharing. Praying!!!

Mama2Kayden said...

God Bless beautiful Miss Miranda ! You sure showed cancer who's the boss!! You totally rock for kickin cancer's butt!!! Hugs to your brave momma.

JennaJennJenn said...

She's beautiful. I'm so glad you still have her. Going to go hug the crap out of my kids now.