Sophia, 5 yr. old with Wilms Cancer
Donation protected
Sophia Freida Greer Age 5 Wilms Cancer
Sophia’s Journey
January 2015 One day after work, Sophia’s mother picked her up from daycare and that evening Sophia said her tummy hurt and she began to vomit and would not stop. She was taken to the ER where they found she had a large tumor on her left kidney, and the tumor had burst. They informed us they would need to transfer her to University Hospitals where they would need to do emergency surgery. They had to remove her left Kidney. They diagnosed her with Wilms Cancer. She underwent 8 months of Chemotherapy and Radiation treatment. In August of 2015 there was no sign of cancer. We were very excited that the treatment worked and we all thought she was cancer free.
December 2015 In December, right after Christmas, Sophia complained that her side was hurting. We also noticed a change in her breathing. We immediately contacted her doctors, they arranged to have an x-ray done the following day and it turned out to be our worst nightmare. Sophia had a huge mass on her right lung. The cancer was back, only this time it was a very aggressive tumor which grew to a very large size in less than 6 weeks. Sophia is currently undergoing chemotherapy (ICE) for the next few months. That will be followed by radiation, a bone marrow rescue and surgery to remove the damaged part of her lung.
March 2016 Sophia has been home recovering from her lung surgery since March 9th. At that time, her scans showed no tumors and the removal of 1/3rd of her right lung went very well. The last few weeks of the month we were preparing to receive her stem cells. We were at the hospital going through the routine tests, such as; cat scan, blood tests, kidney tests, etc. We were scheduled to meet with the transplant team on 3/29 when we got a call from her oncologist saying they detected more tumors on her lungs. The following day we met with her oncology doctors to discuss the details of the tests. In a one month period, since her last scan 11 more tumors grew; this time the tumors are on both lungs. We are scheduled to hear from her doctors in the next few days to see what they plan for further treatment.
April 2016 Results from Sophia’s routine scans came back this week. We were notified by her oncologist that her CAT scan showed 12 tumors that spread over both lungs. These tumors were not visible 3 weeks earlier. We were devastated by the news. Therefore, the stem cell transplant was cancelled. The team met and decided to schedule her for chemotherapy (VIT) starting April 4th. This chemotherapy is a different mix of medications than the chemotherapy (ICE) used before. This decision to change this medication was due to the dangers of doing damage to her one remaining kidney.
May 2016 Scans were run again the beginning of May and they show that the tumors are growing and they detected a additional tumors, 15 total on both lungs. Sophia is scheduled to be involved in an investigational treatment starting the week of May 16th since all conventional treatment is no longer working.
June 2016 We’ve completed 1 round of the investigational treatment. Sophia responded well to the treatment. She’s had some side effects, such as; headaches, dizziness and muscle pain in her arms. Sophia had her scans on June 28 and we couldn’t be happier with the results. It showed 2 tumors were completely gone and the rest decreased in size by 20%. We plan to continue treatment in hopes that the tumors continue to diminish or decrease in size.
July 2016 We’ve completed her 2nd round of the investigational treatment chemo at the end of July. We have to wait a few weeks before we can scan her to see if the treatment was a success.
August 2016 Mid August Sophia had her scan, results showed that more tumors appeared, some were larger and one was close to her heart. The doctors were very concerned and ordered an MRI to get a closer look. The MRI showed that the tumor was NOT touching the heart. We were devastated with the news. The experimental treatment was stopped and our next step was to go to Cincinnati to get a second opinion.
We met with one of the TOP research doctors on Wilms Tumor, Dr. Geller. Dr. Geller is the Director of the Children’s Oncology Group. Our doctors in Cleveland sent Sophia’s entire records, scan, x-rays, MRI’s, etc., for Dr. Geller to review. We met on Tuesday and went over our journey thus far with Sophia. He indicated that he was going to review her file, review he treatments and results of the treatments and we would meet again the following day. Turns out that morning Dr. Geller had a conference call with his staff of doctors, Sophia’s Doctors in Cleveland, doctors from Washington, D.C., doctors from France and Great Britain. Dr. Geller presented Sophia’s case and they all agreed that we should go back to a treatment she had previously that was successful. In case some of you are asking, If the treatment was so successful, why did they stop the treatment? At that time, after her 1st round of ICE (Chemo) that shrunk her large tumor on her lung, they needed to surgically remove the remaining piece of lung and tumor. It took her several weeks to recover from surgery before she could get the 2nd round of treatment. After the second round of treatment (6 weeks after the 1st round) they scanned her and found that the tumors were back.
The night we returned for Cincinnati Sophia spiked a fever and we were in and out of the emergency room for the next few days. The following Monday they admitted her and found fluid on her lungs. They inserted a chest tube to drain the fluid. Once the fever was under control and the fluid was mostly gone they began her chemo (ICE).
September 2016 Sophia had her last scan on Sept. 7th after this last round of chemo (ICE), results show that her tumors shrunk up to 40-50%, some were completely gone and the one next to her heart is barely visible. We are currently waiting for her counts (Immune system) to recover and the plan is to start another round of chemo (ICE) in next week or two.
Sophia’s Family
In December, within a few days of Sophia being admitted for the tumor on her lung, Sophia’s mother Alicia was found to have a blood infection which they think was caused by having a tooth pulled. This infection ran through her bloodstream causing damage to several parts of her body including some major organs. This infection also caused some mild strokes which affected her motor skills. The infection spread to her shoulder, brain and heart. She had surgery to her shoulder and brain and will also need heart surgery to replace a damaged heart valve. Alicia continues to need rehabilitation to strengthen her arm and legs.
June 2016 Alicia’s Update (Sophia’s Mother)
Alicia currently completed rehab to strengthen her ability to use her arms and legs. Her cardiologist still plan to do heart surgery to replace her heart value in the near future. Sophia is staying with her grandparents (Kathy Dalton and Mel Beller), so that she is watched closely at night. Alicia has moved back to her apartment and Sophia visits her during the day. Sophia’s sister, Julianna stays between her mother and grandparents for the summer months.
My husband and I (Kathy Dalton and Mel Beller) have been caring for Sophia, her 13 year old sister, Julianna, and also our daughter, Alicia since December 2015.
September 2016
Alicia is back on her feet and is helping with the care of Sophia and Julianna. She will still need open heart surgery, but at a later date. Her doctors continue to monitor her progress.
Julianna is currently staying with us (Grandparent’s) while Sophia is in the hospital.
I am still on a leave of absence from teaching. I’ve been off of work since January of 2016 to help care for Sophia, Alicia and Julianna. Sophia is NEVER left without one of us to stay with her at the hospital.
Our family is extremely grateful to have so many caring, loving people in our lives. Your encouragement, thoughts, prayers and support are what get us through each day and we thank you from the bottom of our hearts.
Love, Sophia and Family XOXO
Sophia’s Journey
January 2015 One day after work, Sophia’s mother picked her up from daycare and that evening Sophia said her tummy hurt and she began to vomit and would not stop. She was taken to the ER where they found she had a large tumor on her left kidney, and the tumor had burst. They informed us they would need to transfer her to University Hospitals where they would need to do emergency surgery. They had to remove her left Kidney. They diagnosed her with Wilms Cancer. She underwent 8 months of Chemotherapy and Radiation treatment. In August of 2015 there was no sign of cancer. We were very excited that the treatment worked and we all thought she was cancer free.
December 2015 In December, right after Christmas, Sophia complained that her side was hurting. We also noticed a change in her breathing. We immediately contacted her doctors, they arranged to have an x-ray done the following day and it turned out to be our worst nightmare. Sophia had a huge mass on her right lung. The cancer was back, only this time it was a very aggressive tumor which grew to a very large size in less than 6 weeks. Sophia is currently undergoing chemotherapy (ICE) for the next few months. That will be followed by radiation, a bone marrow rescue and surgery to remove the damaged part of her lung.
March 2016 Sophia has been home recovering from her lung surgery since March 9th. At that time, her scans showed no tumors and the removal of 1/3rd of her right lung went very well. The last few weeks of the month we were preparing to receive her stem cells. We were at the hospital going through the routine tests, such as; cat scan, blood tests, kidney tests, etc. We were scheduled to meet with the transplant team on 3/29 when we got a call from her oncologist saying they detected more tumors on her lungs. The following day we met with her oncology doctors to discuss the details of the tests. In a one month period, since her last scan 11 more tumors grew; this time the tumors are on both lungs. We are scheduled to hear from her doctors in the next few days to see what they plan for further treatment.
April 2016 Results from Sophia’s routine scans came back this week. We were notified by her oncologist that her CAT scan showed 12 tumors that spread over both lungs. These tumors were not visible 3 weeks earlier. We were devastated by the news. Therefore, the stem cell transplant was cancelled. The team met and decided to schedule her for chemotherapy (VIT) starting April 4th. This chemotherapy is a different mix of medications than the chemotherapy (ICE) used before. This decision to change this medication was due to the dangers of doing damage to her one remaining kidney.
May 2016 Scans were run again the beginning of May and they show that the tumors are growing and they detected a additional tumors, 15 total on both lungs. Sophia is scheduled to be involved in an investigational treatment starting the week of May 16th since all conventional treatment is no longer working.
June 2016 We’ve completed 1 round of the investigational treatment. Sophia responded well to the treatment. She’s had some side effects, such as; headaches, dizziness and muscle pain in her arms. Sophia had her scans on June 28 and we couldn’t be happier with the results. It showed 2 tumors were completely gone and the rest decreased in size by 20%. We plan to continue treatment in hopes that the tumors continue to diminish or decrease in size.
July 2016 We’ve completed her 2nd round of the investigational treatment chemo at the end of July. We have to wait a few weeks before we can scan her to see if the treatment was a success.
August 2016 Mid August Sophia had her scan, results showed that more tumors appeared, some were larger and one was close to her heart. The doctors were very concerned and ordered an MRI to get a closer look. The MRI showed that the tumor was NOT touching the heart. We were devastated with the news. The experimental treatment was stopped and our next step was to go to Cincinnati to get a second opinion.
We met with one of the TOP research doctors on Wilms Tumor, Dr. Geller. Dr. Geller is the Director of the Children’s Oncology Group. Our doctors in Cleveland sent Sophia’s entire records, scan, x-rays, MRI’s, etc., for Dr. Geller to review. We met on Tuesday and went over our journey thus far with Sophia. He indicated that he was going to review her file, review he treatments and results of the treatments and we would meet again the following day. Turns out that morning Dr. Geller had a conference call with his staff of doctors, Sophia’s Doctors in Cleveland, doctors from Washington, D.C., doctors from France and Great Britain. Dr. Geller presented Sophia’s case and they all agreed that we should go back to a treatment she had previously that was successful. In case some of you are asking, If the treatment was so successful, why did they stop the treatment? At that time, after her 1st round of ICE (Chemo) that shrunk her large tumor on her lung, they needed to surgically remove the remaining piece of lung and tumor. It took her several weeks to recover from surgery before she could get the 2nd round of treatment. After the second round of treatment (6 weeks after the 1st round) they scanned her and found that the tumors were back.
The night we returned for Cincinnati Sophia spiked a fever and we were in and out of the emergency room for the next few days. The following Monday they admitted her and found fluid on her lungs. They inserted a chest tube to drain the fluid. Once the fever was under control and the fluid was mostly gone they began her chemo (ICE).
September 2016 Sophia had her last scan on Sept. 7th after this last round of chemo (ICE), results show that her tumors shrunk up to 40-50%, some were completely gone and the one next to her heart is barely visible. We are currently waiting for her counts (Immune system) to recover and the plan is to start another round of chemo (ICE) in next week or two.
Sophia’s Family
In December, within a few days of Sophia being admitted for the tumor on her lung, Sophia’s mother Alicia was found to have a blood infection which they think was caused by having a tooth pulled. This infection ran through her bloodstream causing damage to several parts of her body including some major organs. This infection also caused some mild strokes which affected her motor skills. The infection spread to her shoulder, brain and heart. She had surgery to her shoulder and brain and will also need heart surgery to replace a damaged heart valve. Alicia continues to need rehabilitation to strengthen her arm and legs.
June 2016 Alicia’s Update (Sophia’s Mother)
Alicia currently completed rehab to strengthen her ability to use her arms and legs. Her cardiologist still plan to do heart surgery to replace her heart value in the near future. Sophia is staying with her grandparents (Kathy Dalton and Mel Beller), so that she is watched closely at night. Alicia has moved back to her apartment and Sophia visits her during the day. Sophia’s sister, Julianna stays between her mother and grandparents for the summer months.
My husband and I (Kathy Dalton and Mel Beller) have been caring for Sophia, her 13 year old sister, Julianna, and also our daughter, Alicia since December 2015.
September 2016
Alicia is back on her feet and is helping with the care of Sophia and Julianna. She will still need open heart surgery, but at a later date. Her doctors continue to monitor her progress.
Julianna is currently staying with us (Grandparent’s) while Sophia is in the hospital.
I am still on a leave of absence from teaching. I’ve been off of work since January of 2016 to help care for Sophia, Alicia and Julianna. Sophia is NEVER left without one of us to stay with her at the hospital.
Our family is extremely grateful to have so many caring, loving people in our lives. Your encouragement, thoughts, prayers and support are what get us through each day and we thank you from the bottom of our hearts.
Love, Sophia and Family XOXO
Organizer
Kathleen Dalton
Organizer
North Ridgeville, OH
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