Julia's Cancer (the short story)

For those of you who are just joining us, here is the shorter version of Julia's cancer journey.  There is much more in the archive links on the side of the blog, beginning on March 25th, 2009.

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In March of 2009, Julia was two years old.  She was talking, laughing, singing, playing, and growing just like any other toddler.

We had just potty trained her and she came down with a UTI (her first).  Her symptoms were classic and the antibiotics brought relief.  The pediatrician wanted her to have an ultrasound and VCUG study to make sure there were no problems.  This is not common practice until several UTIs, but it was at our office.  I was hesitant to subject her to the tests, that were likely unnecessary.  A week later the UTI remained.  I had my answer.  God wanted her to have these scans.  I made arrangements to send Carter with friends and took Julia to our local hospital.  We planned to rejoin him at lunch.

The tech started her ultrasound while Julia lay on the table chatting.  She lingered a long time on the left side and then went out to get another tech.  They both looked again.  They took us out in the waiting room and told us to head back across the street to the pediatrician's office- she didn't need the other scan.  I knew something was very wrong.

We sat in the exam room at our pediatrician's office.  He came in and sat down and began to calmly talk.  "When they did the ultrasound they found a tumor.  Julia likely has cancer and we've called to get her a room on the 9th floor at Brenner's Children's Hospital.  Go home and pack a bag, pick up her scans from the hospital, and head to Brenner's."  The world began to spin around me.  I scooped her up, carried her out, and put her in her car seat.  Then I stood in the rain as the hot tears poured down my face.

I called my husband, my parents, and my friends and let everyone know what had happened.  I had an indescribable peace in the midst of it all.  My tears were not out of panic or fear.  I was just so sad for all that lay ahead for our sweet little girl. Then I frantically packed for our admission to the hospital, while Billy fed her lunch and tried to act like everything was normal.

An hour later we walked in to Brenner's and were taken right to her room where Dr. Wofford (her pediatric oncologist) was waiting for us.  She was looking at the scans and giving us the options.  They still weren't sure completely what they were visualizing and wanted to get a better look with their own ultrasound.  They suggested it could be an extra spleen or something else out of the ordinary. They repeated the scan and determined it definitely was a 7cm tumor on the kidney.  (We were not told at that time that kidney tumors are never benign.) In two hours our world had completely been turned upside down.  But as the world was spinning around us, God was holding us safely in the palm of His hand through it all.


The next day Julia was sedated for a CT scan to check for tumor growth in her chest, abdomen, and pelvis.  The tumor was contained to her kidney and she was scheduled for surgery the next day.

She was in surgery for 7 hours as Dr. Pranikoff removed her kidney, the tumor, the surrounding lymph nodes, and explored her abdomen for any spread.  They sent the tumor to pathology where it was determined to be cancerous and a portacath was installed in her chest for chemotherapy. We finally were able to see her at 8:00pm and she was later taken up to the PICU with 2 IVs, an arterial line, NG tube, catheter, oxygen, and portacath.

The tumor was sent off to determine it's type and to stage her disease.  Dr. Pranikoff said it was a very angry looking tumor, covered in bumps and inconsistencies.  He reiterated over and over just how fortunate she was to have it found this early.  Julia was in the hospital for a week recovering from surgery.  We went home for a brief break and before beginning chemotherapy and radiation.

She was diagnosed with Stage 1 nephroblastoma (Wilms' tumor) with focal anaplasia.  She is one of 40 cases found each year, and one of the only ones ever found in Stage 1.  She had no symptoms of the cancer and it could not be felt from the outside.  The UTI that lead to the scans was completely unrelated to her cancer!! It was completely God's intervention that lead us to her tumor.  Most anaplasia cases are found when the tumors are bulging out of the abdomen and have spread to the other kidney or lungs.  We were so grateful, but a long fight lay ahead.  Her anaplasia diagnosis intensifies her treatment.

It was decided by the Tumor Board at our hospital that Julia would receive COG Regimen DD4A: 28 weeks of chemotherapy (vincristine, dactinomycin, and doxirubicin) and 6 days of (sedated) radiation to her abdomen.  Anaplasia cells are very aggressive.  We want to do everything we can to eliminate it the first time.  Of the 40 anaplasia diagnoses each year, 16 will relapse within the first two years post treatment.  She will continue to be scanned every 3 months for the first 2 years.  Then every 6 months and annually.

Julia handled her treatment amazingly well.  She is an inspiration to everyone around her.  She rarely ever cries during port access and chemo.  She loves Nurse Karen and has developed a very special bond with her.  Oncology nurses are angels on earth and we have some of the best at Camp Brenner.

She endured the fatigue, pain, nausea, vomiting, irritability, constipation, achiness, hair loss, labs, blood transfusion, months of isolation, over 50 trips to the hospital, and 3 hospitalizations with such maturity and grace- well beyond her 3 years!

She tells us her new nickname is 'Superhero Julia'.

We know God has ordained this path for our lives and He has never left us through the journey.  The past year has been filled with countless blessing and opportunities.  We have met some amazing people and our hearts have been opened to families of pediatric cancer and the tremendous need for funding for these cancers.  It is a close-knit family that we all pray we never join, but once here membership is immediate and the bonds last forever.

Thank you for stopping by to share our experience.  The prayers and support from so many have sustained us through the past year.