Today is the day we are attacking the dumplings growing out of control in Trayvon. He lovingly named his fast growing tumors, dumplings and his slow growing ones, biscuits. When the doctor came in this morning to discuss his plan and shared some possible side effects of the meds, he simply stated; "Die dumplings die."
To back track and let you know why we are where we are today, I thought I'd share how the plan changed from day one to this moment.
July - Trayvon's EBV levels had increased significantly. EBV stands for Epstein Barr Virus. 99% of the world population has EBV and most experienced the virus as a simple cold, never even realizing they had caught it. For some it elevates to the classification of Mononucleiosis. The virus is more aggressive and can cause severe throat pain, spleen enlargment, and high fevers. This is not rare but also not super common. Almost all recover with no further issues. However. . . . if one has a compromised immune system, either due to systemic infections such as HIV or take immunosuppression medications (specifically ones that decrease T-cells (the cells that target EBV) then the EBV can multiply out of control. This is what happened to Trayvon.
Over the course of three months Tray had lost 17 pounds, had difficulty eating, was very fatigued and needed blood transfusions due to low red blood cell counts. But he did not have a diagnosis that gave us a reason for these issues.
August 24th - Tray has a severe pain in his side. Thinking he had a possible appendicitis, I took him to the pediatric urgent care. (he has horrible veins and pediatric nurses are so much better at getting IV's). However, due to the tenderness, firmness, and severe of pain in his stomach, they sent him over to the ER. Here he was put on the adult service. Due to Trayvon's unique anatomy (he has many of his organs flipped on the opposite side of his body) we were not even sure where his appendix was, so they did a CT scan to identify and determine if that was the issue. It was there that our new journey began. It was found that he had a large mass in his intestines, most likely a malignancy. While in the ER he recieved a temporary central line in his arm, recieved a blood transfusion and was eventually admitted to the adult oncology floor at Upstate University Hospital.
The adult world of medicine SUCKS! Nothing can be done in an efficient manner. All of his tests he needed were going to be spread out all over the week. We contacted his transplant team in NYC where they arranged for us to meet with their oncology expert and complete all of the necessary testing in one trip to the OR.
August 28th - we went to NYC via ambulance for a full workup. CT scans, x-rays, blood, spinal tap, bone marrow aspirate, upper endoscopy, lower endoscopy, hundreds of biopsies, and adnoide removal all happened in the OR. The adnoide tissue proved to be EBV positive and progressing towards malignancy.
August 31st - returned home to await the results of the pathology report.
September 5th - results show pre-cancer masses called PTLD (post-transplant prolyphorative disorder). These abnormal cells were in his spinal fluid, bones, lungs, liver, intenstines, and neck area. The best treatment was called cytotoxic t-cell therapy (CTL). The CTLs are actual t-cells (the cells his immunosuppression killed off) taken from donor patients. These cells have all been exposed to EBV and quickly and efficiently kill it off. He would get an infusion and the goal is that the CTLs would seek out all EBV and kill it, and with the virus gone, the tumors would disappear too.
September 11th - To be admitted onto the CTL study, a patient has to fail another standard therapy, So Tray had a dose of medication that is specifically suppose to work on this particular type of tumor. Then we had to wait three weeks to see if it worked.
October 11th - Tray has a PET scan in NYC and meets with the study doctor. He appears well so he signs the paperwork for the trial. The PET scan shows advancing disease. He qualifies. They return home that evening. While in the car, his stomach starts to hurt more. Over the course of Saturday and Sunday the pain increases and becomes more continuous. By Sunday night, he was in agony. I brought him to the ER where they did a CT scan and found many more new tumors. The CTLs were going to be ready for infusion on Tuesday so the team had hoped he'd stay stable long enough to get to NY for the trial.
October 13th - admitted to the pediatric oncology floor. Upper endoscopy shows two large tumors in stomach. Biospy shows a fast growing malignancy called Burkitts Lymphoma. Trial in NYC is no an option. He is no longer stable enough to leave the hospital. TPN (IV nutrition is started) consultations begin to identify the best chemotherapy regime to start.
October 20th - Die Dumplings Die! Vincristine, Cytoxan, Prednisone are on the menu today. Tomorrow he has a spinal tap to check for cancer in his spinal fluid and will also get chemo into his spinal fluid. If there is no cancer, he will get chemo as a prevenative measure once a week in his spine. If there is cancer, he will have to do it three times a week. He will be in the hospital for at least another week.
Today he started writing a book. He is thrilled to have a plan and has a positive attitude the majority of the time. He is amazing!!
To back track and let you know why we are where we are today, I thought I'd share how the plan changed from day one to this moment.
July - Trayvon's EBV levels had increased significantly. EBV stands for Epstein Barr Virus. 99% of the world population has EBV and most experienced the virus as a simple cold, never even realizing they had caught it. For some it elevates to the classification of Mononucleiosis. The virus is more aggressive and can cause severe throat pain, spleen enlargment, and high fevers. This is not rare but also not super common. Almost all recover with no further issues. However. . . . if one has a compromised immune system, either due to systemic infections such as HIV or take immunosuppression medications (specifically ones that decrease T-cells (the cells that target EBV) then the EBV can multiply out of control. This is what happened to Trayvon.
Over the course of three months Tray had lost 17 pounds, had difficulty eating, was very fatigued and needed blood transfusions due to low red blood cell counts. But he did not have a diagnosis that gave us a reason for these issues.
August 24th - Tray has a severe pain in his side. Thinking he had a possible appendicitis, I took him to the pediatric urgent care. (he has horrible veins and pediatric nurses are so much better at getting IV's). However, due to the tenderness, firmness, and severe of pain in his stomach, they sent him over to the ER. Here he was put on the adult service. Due to Trayvon's unique anatomy (he has many of his organs flipped on the opposite side of his body) we were not even sure where his appendix was, so they did a CT scan to identify and determine if that was the issue. It was there that our new journey began. It was found that he had a large mass in his intestines, most likely a malignancy. While in the ER he recieved a temporary central line in his arm, recieved a blood transfusion and was eventually admitted to the adult oncology floor at Upstate University Hospital.
The adult world of medicine SUCKS! Nothing can be done in an efficient manner. All of his tests he needed were going to be spread out all over the week. We contacted his transplant team in NYC where they arranged for us to meet with their oncology expert and complete all of the necessary testing in one trip to the OR.
August 28th - we went to NYC via ambulance for a full workup. CT scans, x-rays, blood, spinal tap, bone marrow aspirate, upper endoscopy, lower endoscopy, hundreds of biopsies, and adnoide removal all happened in the OR. The adnoide tissue proved to be EBV positive and progressing towards malignancy.
August 31st - returned home to await the results of the pathology report.
September 5th - results show pre-cancer masses called PTLD (post-transplant prolyphorative disorder). These abnormal cells were in his spinal fluid, bones, lungs, liver, intenstines, and neck area. The best treatment was called cytotoxic t-cell therapy (CTL). The CTLs are actual t-cells (the cells his immunosuppression killed off) taken from donor patients. These cells have all been exposed to EBV and quickly and efficiently kill it off. He would get an infusion and the goal is that the CTLs would seek out all EBV and kill it, and with the virus gone, the tumors would disappear too.
September 11th - To be admitted onto the CTL study, a patient has to fail another standard therapy, So Tray had a dose of medication that is specifically suppose to work on this particular type of tumor. Then we had to wait three weeks to see if it worked.
October 11th - Tray has a PET scan in NYC and meets with the study doctor. He appears well so he signs the paperwork for the trial. The PET scan shows advancing disease. He qualifies. They return home that evening. While in the car, his stomach starts to hurt more. Over the course of Saturday and Sunday the pain increases and becomes more continuous. By Sunday night, he was in agony. I brought him to the ER where they did a CT scan and found many more new tumors. The CTLs were going to be ready for infusion on Tuesday so the team had hoped he'd stay stable long enough to get to NY for the trial.
October 13th - admitted to the pediatric oncology floor. Upper endoscopy shows two large tumors in stomach. Biospy shows a fast growing malignancy called Burkitts Lymphoma. Trial in NYC is no an option. He is no longer stable enough to leave the hospital. TPN (IV nutrition is started) consultations begin to identify the best chemotherapy regime to start.
October 20th - Die Dumplings Die! Vincristine, Cytoxan, Prednisone are on the menu today. Tomorrow he has a spinal tap to check for cancer in his spinal fluid and will also get chemo into his spinal fluid. If there is no cancer, he will get chemo as a prevenative measure once a week in his spine. If there is cancer, he will have to do it three times a week. He will be in the hospital for at least another week.
Today he started writing a book. He is thrilled to have a plan and has a positive attitude the majority of the time. He is amazing!!
