I was pretty well prepared for bad news when we went for the ultrasound on 5/10/99. They did the ultrasound which clearly showed the tumor. They did a chest x-ray to check for metastatic disease and it was clear. They did a CT scan and admitted him to the hospital. They said the tumor extended into the left renal vein and was .5 cm away from the inferior vena cava. They wanted to do surgery the next day. They talked to us about Wilms tumor and its treatment.
They removed Andy's left kidney and tumor on 5/11/99. The surgery went very well. They also inserted a mediport under Andy's skin. This device allowed Andy to get his chemo and other medicine and have blood drawn without having to have an IV started everytime.
On 5/13/99 they got the pathology report back for the tumor. The doctor said words I will never forget - 'It's not a wilms but a much more agressive form of cancer'. He said it was clear cell sarcoma of the kidney and the survival rate was around 60-70%. It is more likely to metastasize to the brain and bones than a wilms. They did many more tests to make sure it had not already spread. They did an MRI of the brain, a bone scan and a skeletal survey. Thank God there was no metastatic disease. They did an echo cardiogram. The chemo he would be receiving can sometimes cause heart muscle damage and we needed to have a baseline. We met with the pediatric oncologist and Andy was enrolled in a National Wilms Tumor Study Group Study. The NWTSG (affectionately called nitwits) is a group of medical professionals that do research on and design treatment plans for children with kidney tumors.
Andy was to have 6 days of radiation and 24 weeks of chemotherapy. He would have to be admitted to the hospital every 21 days for either 3 or 5 days. He would have to go to the outpatient clinic for chemo and blood tests the weeks that he was not in the hospital.
The oncologist gave us papers that described each of the drugs Andy would be receiving. It was unbelievable. The papers listed short term side effects that we had heard about such as hair loss, nausea and a suppressed immune system. After each chemo cycle we had to give him injections of neupogen to help his white blood cells recover. We would have to give him an oral antibiotic called bactrim three days a week because without it he would be susceptible to a fatal pneumonia. Even with neupogen and bactrim we would still have to watch for fevers and infections. If he gets a fever of 101F or higher he would have to be admitted to the hospital for IV antibiotics. He would probably need transfusions of red blood and platelets because the chemo damages his body's ability to make blood cells. We were told to use gloves when we changed his diapers for the first few hours after he received his chemo because the drugs come out in his urine and can burn the skin. The vincristine could cause nerve pain and difficulty walking. It can also cause severe constipation. They recommended we keep Senekot on hand. The cytoxan could cause bleeding in his bladder. All the drugs can cause mouth sores.
The long term side effects were even more scary. The VP-16 could cause him to get leukemia in a few years. The doxorubicin can damage the heart. The cytoxan could affect his future fertility. The radiation could cause curvature of the spine. It could also cause secondary tumors in the future. It all seemed so unreal, but without these drugs Andy had very little chance of survival.
Andy recovered quickly with no complications from his surgery. He received his first dose of chemotherapy before he was discharged. That first hospital stay was 10 days.
Andy had his radiation treatments the week after he was discharged from the hospital. He had to be sedated for the treatments. He threw up each morning from the anesthetic but was fine for the rest of the day.