Rylee's Story

rylee with hair.jpeg
rylee in hospital bed.jpeg

-from Candace, Rylee's Mommy

Rylee was a happy, healthy, spunky toddler that was so full of life. One day while changing her diaper I noticed something was not right.  I immediately called and set up a telephone appointment with an on-call doctor because Rylee's primary doctor was out of the office that week.  During that appointment the doctor and I went back and forth on getting an in-person visit.  She kept telling me it wasn't necessary and continued pushing a video visit. I told her if she was unable to schedule a visit for her I would just show up and hope for the best. I needed to have her seen in person. She finally agreed and made me an in-person visit for Rylee that day, October 21, 2010.

 

The doctor examined her and wasn't 100% sure what was going on so she decided to refer us over to a pediatric gynecologist in Oakland. Waiting for the specialist appointment felt like it was taking forever but a week and a half after the initial visit she was seen on November 2, 2020. During the initial exam the gynecologist wasn't able to see anything as the vaginal lesion didn't always present itself. I did take a photo just in case this was the issue and I showed her. She asked me what some of my concerns were as she knows parents tried to do their own research, I told her that I thought it could potentially be a Bartholin's gland cyst, or I thought it could be Rhabdomyosarcoma. She said it definitely wasn't a cyst of the gland but we weren't going to rule out the other quite yet.

 

That day she sent us over for an ultrasound to see if it was possibly just a cyst pushing out the vaginal wall but as soon as they did the ultrasound they showed me where the lesion was on the screen. I saw it was solid and there was no fluid. She was able to get us in for surgery/biopsy of the mass on November 5, 2020. Her surgery was scheduled and was supposed to only take about an house, but it took about three and a half with no updates throughout. My husband and I were sitting in the waiting area waiting for her to come out of surgery when a woman walked out and said she worked for Kaiser pediatrics and asked if we wanted to talk in a more private place.  Dr Caroline Hu confirmed that Rylee was doing okay however they had a pathologist look at the tissue from the lesion under the microscope and determined it was a malignant tumor.

The rest was kind of a blur at that point because those are words that you never want to hear. Your baby has cancer. When the full pathology report came back on November 10th it showed she had Embryonal Rhabdomyosarcoma.

Rylee was scheduled November 13th to be put under anesthesia to do a chest CT, an abdominal and pelvic MRI, a PET scan, a bone marrow biopsy, and bone marrow aspirate. She was under anesthesia close to 7 hours to get all these things done at one time to make sure the disease was not metastatic. After review of all the imaging it was determined that her tumor was localized and 13mm x 9mm x 6mm. 

The following weeks were all a whirlwind of information and we didn't really have time to process anything as quickly as it went. Rhabdo is very aggressive so we had to act quickly. We scheduled her surgery for Port placement on November 23. A last minute decision was made between my husband and I to have one of her ovaries removed and cryogenically frozen. Our hope is that years down the line they have the technology to develop such an immature ovary and she could one have her own children. We were told the amount of cyclophosphamide she will receive is double the dose of what causes infertility.  That was just salt in the wound.

Because of the ovary removal we had to go to Santa Clara to have the port placement and ovary removal, and immediately after we had to drive to Kaiser Oakland to be admitted for her first round of chemotherapy. The chemotherapy medications she is on are called Cyclophosphamide, Vincristine, and Actinomycin. The protocol calls for all three medications every 3 weeks and impatient stays at the hospital in order to have proper hydration as the Cyclophosphamide can cause damage to the bladder and the kidneys. When not in-patient, we do a visit to the clinic once a week so she can get the Vincristine.

Generally her stay in the hospital goes pretty well. There was one visit that the Lidocaine wore off as the nurse was trying to access her port and unable to do so correctly. She tried to gain proper access three different times without success.  This now makes port access extremely difficult as she has the fear of the pain that was caused during that access. The only other stay that stands out, she was getting her post hydration after chemo and the needle somehow slipped out of the port. This caused fluid to build up under the skin which caused extreme swelling and pain. They had to place an IV in her arm and try to re-access her port to make sure there were no blood clots and that they were able to get a good blood return.

I would like to say that she handled it well, but it was a very trying time.  She has done pretty well so far with limited side effects from the treatment. You wouldn't even know she was sick if she didn't lose her hair.  Her blood counts do fluctuate, but it never slows her down. She has only had two blood transfusions so far and one was preventative. 

It has been a long, hard journey dealing with this disease but Rylee gives us such inspiration with how strong she is.