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Germ Cell Tumor Malignant Sacrococcygeal Teratoma Yolk Sac (endodermal sinus)

Diana's Story, by Jennifer K., told on June, 26, 2005

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Germ Cell Tumor
Diana was born March 23, 2002. By all accounts completely healthy. She was ahead of other children developmentally; and she was social, extremely active and insanely beautiful. To know Diana is to simply adore her.

About the age of two she began to complain about riding in her car seat. She would whine and say "poopy". Silly me, I thought she was getting ready for potty training. When we realized she was constipated, we visited the doctor. They instructed us on the use of suppositories and diet changes - which worked. She still complained in the car, but the pediatrician chalked it up to constipation, her urge to "go", and that she was holding it in.

On July 4th, 2004, she fell while walking backward, and landed on her coccyx (tailbone). This is a child who would never cry when she fell, even if  blood was running down her knees. This time, she was hysterical and in total distress. After three weeks of a the resulting bruise not healing, I took her to the pediatrician. I was concerned that she may have broken her coccyx. The doctor examined her, felt the bruise/contusion, and sent us for an x-ray. We got the results that everything was fine and were told to keep her comfortable with Motrin and a cushion. The doctor advised us that she would feel better soon.

In Mid August, the bruise was still there. I hated putting her in the car seat, since she was so uncomfortable.

While playing in pre-school, Diana fell again. She spent the night with my sisters and when she came home the  next day, I realized something was wrong. When I saw her walk to the bathroom, her bum was so swollen it had no crack (for lack of better word). Her bottom was flat as a board. The very next morning, I called the pediatrician's office. We were seen immediately. The doctor did an internal exam and found that there was swelling on her intestines. The doctor and I were both worried that Diana had a hairline fracture on the coccyx from the second fall.

Her pediatrician told me that I needed to see a "super-pediatrician" to take a look at Diana, since a break like this, with the swelling on her intestines, would be complicated. We got an appointment for the following week at the Children's Hospital of Philadelphia. That was on August 23, 2004, at 9 am. By 9:45, we were discussing cancer. We went in for a broken coccyx, and stayed there for about two weeks. That was just the beginning!

Malignant Sacrococcygeal Tumor On August 23rd, she had blood work and a CT scan. The 24th, she had an MRI and lost her bladder functions. On the 25th, they installed a port and did a biopsy. Within 12 hours of the biopsy, on the 26th, she had her first round of chemotherapy. In a matter of only 60 hours, we went from broken bone to chemotherapy treatment. What a mind blowing experience! For the first time in my daughter's life I had no control, no options, and honestly no mindset to handle any of it.

One tumor was huge for such a little, 2 year old, girl. It filled her entire pelvis; going around her left hip, over to the right hip, up her spinal canal, and displaced her rectum. The tumor had fingers and was woven through her buttocks. She had metastasis in three of the four lobes of her lungs. The largest was 8mm x 8mm. It was hard enough to find out she had cancer.  To find out that the cancer was already at such an advanced stage, really knocked me out. It felt like I had been sleeping in bed with a nuclear missile and never knew it!

The cancer was in the germ cell tumor family of tumors. It was a malignant sacrococcygeal teratoma yolk sac (endodermal sinus) tumor - such a large name for such a tiny little girl. Diana's surgery had gone well. Even with the chemotherapy, and the risks of surgery and chemo in the same 24 hours, she did great. On the 26th, we learned that Diana was allergic to plastic and tape. Where her bandages touched her skin, she was full of blisters. This unusual allergy is something we struggle with every time we go to the hospital. When her sutures were removed, the 3 inch incision opened and necrotic material seeped out. This went on for 4 months until the week before her resection. Every poop, and three times a day, we had to pack and clean the incision. We were under constant fear of sepsis. That was a harrowing time for us.

Diana had a total of 6 rounds of chemotherapy and 3 surgeries.  The first two rounds of chemo required blood transfusions.  After each round of chemotherapy, she would get a fever, and we would be in the hospital for a week or so. It wasn't until the fifth round that we realized that the Bleomycin might be causing the fevers. Round six, we got to stay at home.

After the 4th round of chemo, she had a resection. It went beautifully and she was out of the hospital three days earlier than scheduled. We basically got thrown out, since Diana was running up and down the hallways. She is amazing! Her drive and resilience continues to shock me. She had about a 7 inch incision, that actually was easier to care for than the troublesome 3 inch one.

The number of emergency room visits and overnight stays was incredible. We got to be 'regulars' on the oncology floor, but she responded to treatment beautifully. She was an amazing patient. She didn't really throw up a lot, but when she did; she would throw up, give me the pan back, and go play, never really missing a beat. She never complained or got upset. She was, and is, always very cool. When I think of the pain she was in for so long and how painful the surgeries must have been; and yet, she still just played and was her goofy self. I cry just thinking about how strong she is and how much dignity she has. She carries herself so well and I admire her so much. 

She participates in her care. She tells the doctors what to do and gets really mad if they don't listen to her back with the stethoscope. She, like all the other oncology kids, is amazing, caring, wonderful, and more grown up than she should have to be.  And yet, in spite of all she has been through, she is a really great, well-rounded, kid.

Her last treatment was in January. Her port was removed in April. I have made it through, but I now realize that I was extremely stressed, exhausted, and frightened during all of this. Recently, her counts have edged up slightly and the doctors are concerned. This development brought back so much that I haven't taken the time to feel or deal with it.  I know I need to find that time. My biggest frustration through all of this was the feeling of being so alone, and venturing so far into the unknown;  not just for me, but for the doctors as well.

I failed to mention my husband. I know his pain is great. For a man to have to learn to catheterize his daughter, do that for weeks, and even be able to do it on command; is a true testament to his abilities. He has been just wonderful and very involved with her care. He is more tactical in nature, and I am more strategic, so it has balanced out well. He does suffer though. He lost both of his parents to rapidly growing cancers. His mother's journey was particularly gruesome and quick.

Thank you for taking the time to read Diana's saga. We have had great support, but there is a loneliness in not being able to 'compare notes' with another parent going through the same diagnosis. In sharing, we might have learned what may have worked, or not. And it would have been comforting to share with another parent what the heck this thing is and how they managed their child's emotional needs; as well as the cancer.

It is just very lonely! If you have a child with this disease, contact me through the forums.  I could share so much more about our journey and how cool my kid is.....