THE STORY FROM HER MOM, STEPHANIE:

Sydney was having a slumber party for her 9^th birthday when she started complaining that her side hurt. She had played softball the night before so we were sure that she had just twisted wrong or something. By the next day she was walking hunched over and in a lot of pain. Her father took her to urgent care on a Sunday and they did some initial tests. We already had appointments for physicals on Wednesday with our pediatrician and when we saw her she said the initial tests came back normal and noticed a that one of Sydney’s sides seemed to be bigger then the other, it was almost unnoticeable but she ordered more tests, this time some blood work.

 

At that point in Sydney’s life she had been through 13 surgeries, she was born with a cleft palate, had multiple surgeries on her ears and we had just had our “last surgery” in February and were looking forward to a fun summer. On Friday Sydney’s pediatrician called me and said that her blood work was normal and that she wanted Sydney to have a CT scan and to meet with a hematologist, at this point we were guessing it was something to do with her spleen. We immediately pulled Sydney out of school as she needed to fast for the CT scan, we went and met with the hematologist who really couldn’t provide much information at that time. We went over and had the CT scan and they immediately put us on the phone with the hematologist who told me that it was not her spleen, that it was in fact a softball size tumor that had completely taken over Sydney’s kidney. All results were coming back normal because her kidney stopped functioning a long time ago and the other kidney had taken over. They suspected that she had a pediatric cancer known as Wilm’s Tumor. They wanted Sydney admitted immediately so we drove straight to the hospital and she was admitted to ICU.

 

To say this was one of the hardest days of my life would be an understatement, and the days to come each took their own hits. We were in shock, here my beautiful 9 year old went from having a little pain in her side to getting IVs and tests and planning for surgery. Once we were admitted they told us the number one concern was to get the tumor removed, they were afraid it would burst and cause more issues, they were planning to do surgery on Monday. On Saturday they did a chest x-ray. On Sunday they did a different kind of scan. On Sunday night they let us know that the cancer was also in Sydney’s lungs and vena cava which is the main vein of your body.

 

On Monday about an hour before surgery they pulled us into a room with the surgeon, the hematologist who turns out is also an oncologist (I am sure this was not a surprise to anyone but me in my little non cancer world), a social worker, and a chaplain and explained to us that they had consulted nationally and internationally regarding Sydney. They were looking for cases where a tumor had been successfully removed from a vena cava, and unfortunately the surgery had only been attempted 2 times with no survivors. They wanted to let us know that they still wanted to perform surgery on Sydney that day but they would not be removing that stupid ugly tumor, instead they were going to examine her other kidney to ensure that it was indeed healthy and cancer free, they would biopsy the tumor and insert a Broviac which is a tube that would now come out of Sydney’s chest where she could get chemo and other medications instead of having to continuously be poked throughout treatment.

 

The surgery took six hours, it felt like a lifetime, the majority of the time was spend “containing the tumor” as when they biopsied the tumor it became “angry”. Sydney had 9 staples across her abdomen and looked like she had been in a magic trick that went bad, however that didn’t stop her from getting out of bed and walking the next day. She started chemo that Thursday and was released to go home on Friday and that is where our cancer journey began.

 

Sydney went on the have three different types of chemo, full trunk radiation, multiple transfusions and two more surgery. The chemo reduced the tumor to the size of a golf ball and was removed along with her kidney as well as most of lymph nodes as they were all full of cancer.

 

No one likes to talk about pediatric cancer, or all the horrible things that go along with it, watching your 9 year old lose 20% of her body weight, shaving your daughter’s beautiful hair off, holding your child as procedures are done that cause them pain when you feel like you should be protecting them, seeing them unable to participate in activities, or swim or bathe. The list literally goes on and on.

 

There is another side though, a side we should be talking about  like seeing your 9 year old go to school and speak in front of the entire school about what she was going through and asking them to accept her baldness. Watching your frail daughter participate in and win an oral language fair. Seeing your bald daughter tape up her broviac and step on the soccer field and running with a smile on her face. Delivering books to cancer patients that your daughter and her classmates created and most of all seeing her conquer this beast of a disease and the amazing warrior who has walked out on the other side.

 

My daughter isn’t considered cured, she is considered to have no evidence of disease, N.E.D., three letters that we pray to hear every year when she has follow up scans. I always say of our cancer journey that I didn’t like it, wouldn’t want to repeat it but that I will take the good from it and we will use it to help others. Sydney used to say she had cancer, cancer didn’t have her – in other words it doesn’t stop us from living, and most of all it doesn’t take away the hope that we have, even in some of the darkest hours.

 

Sydney is graduating from high school in May, something that at one point didn’t seem possible. I wasn’t even sure she would make it to double digit years, much less teenage and almost an adult. She is working on a Senior Project at school to raise pediatric cancer awareness. She has a strength, outlook on life  and depth to her that makes me so proud. Friday, January 30th she celebrates 8 years off treatment which is a major milestone. I cannot wait to see what the future holds for her and in the mean time we will continue to live by two saying that we held dear to while going through treatment:

 

Be kinder than necessary for everyone you meet is fighting some kind of battle.

Live, Love, Forgive, and Never Give Up!

 

And the verse that carried us through –  “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” 2 Cor 4:16-18

 

SYDNEY’S EXCERPT:

Cancer is scary no matter what age you are, but when I was diagnosed days after my ninth birthday with stage four Wilm’s tumor and my parents and I were told that I had a softball sized tumor on my left kidney, nodes in my lungs and it was inches away from my heart in one of the main veins of my body I don’t think scared would be a proper adjective. Cancer changed me as a person in so many ways that I am both thankful for and it also left scars that I can’t remove both mentally and physically. I endured chemo and full trunk radiation after both of those treatments they completely removed my left kidney. Eight years ago on January 30 I ended cancer treatment and showed no evidence of disease. Cancer gave me a different outlook on life that many people my age don’t have, I also met many people through the experience such as Teri Fode. It meant a lot to me to wear my gold dress in my senior portraits as gold is the color for pediatric cancer awareness, wouldn’t it be nice if people recognized the gold ribbon like they do the pink ribbon.  Having pediatric cancer also introduced me to the world of charities and organizations that do fundraisers for pediatric treatment. After my treatment ended and throughout these last eight years me and my family have participated in many of these and raised money for the cause. I am also doing a Senior Project to raise awareness for pediatric cancer, interviewing survivors, making posters and doing a drive for the local pediatric cancer unit.