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Meet Grace – Rhabdomyosarcoma

Meet Grace – Rhabdomyosarcoma

Grace is a smart, beautiful, thoughtful, and sweet spirited twelve year old girl. She loves history, science, archery, fashion and she loves figuring out puzzles. She also loves to travel and since her father serves in the US Navy, she has been able to see some amazing places. We currently are living in Hawaii and have truly enjoyed taking advantage of the beaches and marine life here. Our last vacation to the Big Island, before everything changed, was a special one. We hiked to waterfalls, went horseback riding, saw turtles, and even watched the lava flow in Volcanic National Park. Little did we know that only ten days later our lives would change so drastically.

On October 18th Grace went to bed just like normal. After laying down for about 20 minutes, she complained about some pain and shortness of breath. After telling us, we realized her heart was beating very fast. We took her into the emergency room that night and after an x-ray they discovered that her left lung had collapsed. This was due to her chest cavity being filled with fluid which had also shifted her heart slightly to the right side of her body. She was then taken to Kapiolani Hospital for Women and Children by ambulance that night. Once there, the doctors informed us that the main concern was a mass they had found on her diaphragm. After several days of tests, we were told that she had been diagnosed with a type of cancer called Alveolar Rhabdomyosarcoma. 

She is currently undergoing chemotherapy and radiation treatment. She has been poked, prodded, had countless blood and platelet transfusions, CT scans, PET scans, echo cardiograms, missed out on birthday parties, fun outings, and friends get togethers. Through it all she has managed to keep her sense of humor and the determination that cancer will not win.

A cancer diagnosis doesn’t just affect the patient, but also the family. Our family has always been close, but since Grace’s diagnosis we have reevaluated what is important. Experiences and memories are what we cherish the most.  The friendships we have made are deeper, the quiet moments just holding your children are sweeter, listening to your daughters whisper to each other and giggle swell your heart with happiness, and watching them play with their friends on a good day are more precious. Material items can never equal to this. As a parent you want to give your children the world and protect them from all the evil. Cancer is an evil that I could not protect Grace from, but we will all fight it together.         

Hope session by Kacey Norris Photography.
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Meet Marlow – Rhabdomyosarcoma

Meet Marlow – Rhabdomyosarcoma

Marlow is a very bright light full of energy, love and fight. She is so very silly and loves her pets ( cat). She is a very social kid and loves her friends but she has had a very limited opportunity to go to school.

In December of 2011, we noticed swelling in her leg. We were prompted to call to doctor and had an immediate diagnosis of Stage 4 Rhabdomyosarcoma. Rhabdomyosarcoma is a soft tissue sarcoma cancer and can occur anywhere in the body. Since it can occur anywhere, symptoms from this type of cancer range from pain to swelling to vomiting.

Marlow has had radiation three separate times. Her right leg is shorter than the other from radiation. She currently has masses in both lungs. We have had a lot of treatment and side effects in the last 5 years. She reached complete remission 4 times with recurrence shortly after each time. She received a stem cell transplant in August of 2016. She then relapsed post transplant in January 2017. They are now trying to stabilize disease and extend life but there is a poor survival rate.

This diagnosis has changed so many aspects of our life. Marlow has literally been fighting for well over half her life. Our family travels to Toronto for treatment which has added an enormous strain. I could spend pages describing how this child has fought and lived beyond everyone’s expectations. We know that each day is a gift and we are so lucky to have our beautiful girl.

Hope session by Eden Grove Photography

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Meet Marlee – Alveolar Rhabdomyosarcoma

Meet Marlee – Alveolar Rhabdomyosarcoma

Marlee is a total goofball! She loves when people pretend to be hurt(bump their head, fall down, etc). She is very bashful at first, but give her 30 minutes and she will open right up and laugh with you. She loves puppies and has one of her very own, a boxer named Tank. She is also a big music lover and dances all the time. She loves to ride the tractor and four wheeler rides with her daddy. Even her little plastic riding toys, she can’t get enough.

Early this year, her eye started swelling up pretty bad and never seemed to go down. We discovered she had Alveolar Rhabdomyosarcoma or ARMS. ARMS is usually found in the torso or arms of older children but usually a lump is the main warning sign. The swelling actually turned out to be the tumor pushing out on her eyeball. Other than that she really had no other symptoms.

She has had 2 CAT scans, 2 MRIs, one PET scan and 2 biopsies(one on her eye and one on her sternum to check for possible metastasis). She has had a lumbar puncture, bone marrow taken and also a port inserted in her chest so she doesn’t have to get poked every time she has chemotherapy. She has had 2 rounds of chemotherapy so far and has handled it pretty well. Radiation for her will start later.

We face the usual challenges, money and work are big ones. My work is very understanding and I can take he time I need. Money is and always will be an issue, but it is also something that always works itself out. My daughter is more important than any amount of money. Keeping her with me is my main focus. We are currently living with my parents due to some light construction at our house. The dust is a threat to Marlee’s health, so we will be here for a few more weeks. That has been the biggest change. We haven’t been able to fully get into our “regular” routine. Having the extra help from my parents has been a real blessing, though!

It’s amazing how much life Marlee has in her! It is really like nothing is different with her, but as she gets older she will know that she is a very special girl who overcame amazing obstacles! She just started losing her hair. I think people are crazy when they recommend putting a bandana or hat to cover her bald little head. This is my baby, and although cancer is bad, this is her and this is such a big part of her life. I want to document it all. I have been scrapbooking for a few years now, and she will get a scrapbook telling her entire cancer story. It is not something I want to hide. These pictures will be part of that. A company so special to offer something so sentimental is amazing. These will undoubtedly be her only professional “cancer pictures” I will own. The others will be of hospital stays, post-chemo days, visitors, the really raw stuff. I don’t know how to make cancer something beautiful, but you guys do. I know, because I looked at your photo shoots of other beautiful fighters.

Marlee’s support page

Hope session by Tim and Madie Photography LLC.

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