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.
We had just potty trained her and she came down with a UTI (her first). Her symptoms were classic and the antibiotics brought swift 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 the doctor requested it anyway. 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 them for lunch at Chickfila.
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, but had no idea what it could be.
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 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 Brenners. Her oncologist is waiting in her room." 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 for what I knew my girl was about to go through.
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 ureter, the adrenal gland, 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, 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 28 weeks of chemotherapy and radiation.
She was diagnosed with Stage 1 nephroblastoma (Wilms' tumor) with focal anaplasia. She is one of 40 anaplastic 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 liver 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 7 rounds of (sedated) radiation to her abdomen. Anaplasia cells are very aggressive. We want to do everything we can to eliminate it the first time. After that we would always be playing catch up. 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, then 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 74 trips to the hospital, and 4 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.
Julia's Cancer Timeline:
March 2009: Tumor found in routine ultrasound
March 2009: Radical nephrectomy, Wilms' tumor, Stage 1, focal anaplasia
April 2009: Begin DD4A chemo regimen with radiation
June 2009: Blood transfusion
October 2009: Last chemo treatment! OT!
January 2010: Clear scans, no evidence of disease (NED).
February 2010: Port removed
April 2010: Clear scans, referred to GI
July 2010: Blood in urine UTI
July 2010: GI determines she is bowel incontinent from surgery, chemo, and radiation
July2010: Scans show 3, 3.5mm spots on her lungs
September 2010: Chest x-ray does not raise concern about spots
October 2010: Lung spots no longer presenting as concerning. PRAISING GOD! Scans are ruled clear and still NED.
Late October 2010: Blood in the urine, bowels still incontinent, UTIs, Decision made to proceed with bowel surgery. Awaiting colonoscopy to determine exact plan.
December 2010: Recurrent severe UTIs with partial blockage and bleeding. Put on prophylactic antibiotics. Still bowel incontinent and colon is now compressing other organs.
January 2011: Week long admission for Golytely GI flush, colonoscopy surgery, and colonic manometry to determine GI course of action. CT scans of chest, abdomen, and pelvis show NED (15 months)!
February 2011: Decision is made she will definitely have cecostomy surgery.
March 2011: Cecostomy surgery. Begin bladder catheterizing at home as needed in addition to daily cecostomy flushes.
March 2011: Begins counseling at KidsPath for post-traumatic stress issues
April 2011: NED
July 2011: Finally able to potty train!
August 2011: Cecostomy flushes begin to lose effectiveness- all meds and solutions doubled indefinitely.
Fall 2011: Begin doing granulation tissue burns at home every 2-3 weeks
October 2011: NED at two years off treatment!
April 2012: NED, still cecostomy-dependent- meds weaned to original dosage
May 2012: Shingles
August 2012: Shingles
October 2012: NED, still cecostomy dependent, 3 years OT!
January 2013: water deprivation test to rule out diabetes insipidus are clear, diagnosed with psychogenic polydipsia (a form of water addiction), single kidney function is normal!
February 2013-April2013: Severe right side pain between ribs. Cause never determined. Vicodin for pain.
October 2013: NED, radiation-induced scoliosis
February 2014: GI meds losing effectiveness, dosage increased
April 2014: Begin struggling with chronic headaches and stomach pain
October 2014: Two spots on lungs, low neutrophils and WBC, diffuse bladder thickening and debris, moderate bacteria and high leukocytes in urine
October 2014: Lungs clear- NED!!!
December 2014: Neurology for chronic headaches, began supplement regimen for pain management. Begin Prilosec for upper GI pain/ulcers.
January 2015: FDA approves new drug for pediatric GI motility use- Amitiza. Julia begins twice daily oral doses.
August 2015: Headaches are less frequent. Amitiza appears to be working, analyzing our data and continuing. Trying to find better balance with upper GI meds to reduce side effects.
October 2015: First visit in Long Term Care Oncology Clinic! Still NED!! Labs show neutrophils and WBC to be permanently low from treatment. Urinalysis results abnormal- more testing. Other issues are stable.
************************
In March of 2009, Julia was two years old. She was talking, laughing, singing, playing, and growing just like any other toddler. She was always joyful, encouraging, and loving to those around her. She had been a very healthy child since birth.
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, but had no idea what it could be.
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 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 Brenners. Her oncologist is waiting in her room." 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 for what I knew my girl was about to go through.
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 diagnosed with Stage 1 nephroblastoma (Wilms' tumor) with focal anaplasia. She is one of 40 anaplastic 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 liver or lungs. We were so grateful, but a long fight lay ahead. Her anaplasia diagnosis intensifies her treatment.
Julia's Cancer Timeline:
March 2009: Tumor found in routine ultrasound
March 2009: Radical nephrectomy, Wilms' tumor, Stage 1, focal anaplasia
April 2009: Begin DD4A chemo regimen with radiation
June 2009: Blood transfusion
October 2009: Last chemo treatment! OT!
January 2010: Clear scans, no evidence of disease (NED).
February 2010: Port removed
April 2010: Clear scans, referred to GI
July 2010: Blood in urine UTI
July 2010: GI determines she is bowel incontinent from surgery, chemo, and radiation
July2010: Scans show 3, 3.5mm spots on her lungs
September 2010: Chest x-ray does not raise concern about spots
October 2010: Lung spots no longer presenting as concerning. PRAISING GOD! Scans are ruled clear and still NED.
Late October 2010: Blood in the urine, bowels still incontinent, UTIs, Decision made to proceed with bowel surgery. Awaiting colonoscopy to determine exact plan.
December 2010: Recurrent severe UTIs with partial blockage and bleeding. Put on prophylactic antibiotics. Still bowel incontinent and colon is now compressing other organs.
January 2011: Week long admission for Golytely GI flush, colonoscopy surgery, and colonic manometry to determine GI course of action. CT scans of chest, abdomen, and pelvis show NED (15 months)!
February 2011: Decision is made she will definitely have cecostomy surgery.
March 2011: Cecostomy surgery. Begin bladder catheterizing at home as needed in addition to daily cecostomy flushes.
March 2011: Begins counseling at KidsPath for post-traumatic stress issues
April 2011: NED
July 2011: Finally able to potty train!
August 2011: Cecostomy flushes begin to lose effectiveness- all meds and solutions doubled indefinitely.
Fall 2011: Begin doing granulation tissue burns at home every 2-3 weeks
October 2011: NED at two years off treatment!
April 2012: NED, still cecostomy-dependent- meds weaned to original dosage
May 2012: Shingles
August 2012: Shingles
October 2012: NED, still cecostomy dependent, 3 years OT!
January 2013: water deprivation test to rule out diabetes insipidus are clear, diagnosed with psychogenic polydipsia (a form of water addiction), single kidney function is normal!
February 2013-April2013: Severe right side pain between ribs. Cause never determined. Vicodin for pain.
October 2013: NED, radiation-induced scoliosis
February 2014: GI meds losing effectiveness, dosage increased
April 2014: Begin struggling with chronic headaches and stomach pain
October 2014: Two spots on lungs, low neutrophils and WBC, diffuse bladder thickening and debris, moderate bacteria and high leukocytes in urine
October 2014: Lungs clear- NED!!!
December 2014: Neurology for chronic headaches, began supplement regimen for pain management. Begin Prilosec for upper GI pain/ulcers.
January 2015: FDA approves new drug for pediatric GI motility use- Amitiza. Julia begins twice daily oral doses.
August 2015: Headaches are less frequent. Amitiza appears to be working, analyzing our data and continuing. Trying to find better balance with upper GI meds to reduce side effects.
October 2015: First visit in Long Term Care Oncology Clinic! Still NED!! Labs show neutrophils and WBC to be permanently low from treatment. Urinalysis results abnormal- more testing. Other issues are stable.
