New Chemotherapy Regimen & Mediport Replacement Surgery

The past several days have been quite the rollercoaster. Friday morning Dr. Patrick Chang, Aiden’s oncologist, told Chris and I that he now would like to treat Aiden more aggressively. Nothing has changed in regards to the tumor, but after speaking with Dr. Douglas Hawkins, chair of the rhabdomyosarcoma clinical trial for the Children’s Oncology Group, Dr. Chang feels that we should employ a more aggressive chemotherapy regimen. Aiden will now receive 54 weeks of chemo which will involve 4 additional chemotherapy agents.

During Aiden’s original surgery – when the tumor was discovered – some of his pleural fluid was sent to pathology for testing. It came back positive for cancer cells. This was not surprising, however, since all tumors of the diaphragm involve a pleural effusion (excess fluid which accumulates in the pleural cavity). Dr. Hawkins is concerned that if we do not treat Aiden more aggressively now, there is a chance the cancer can come back after treatment. Evidence of malignant cells in his pleural fluid gives us more reason to use a hard-hitting treatment approach.

More extensive chemotherapy, of course, involves more possible side-effects. Special care is being taken to ensure Aiden’s overall safety and comfort. Aiden is receiving appropriate doses based on his age and size. Also, he will receive potent chemotherapy agents (or combination of agents) in the hospital so that he can be more closely monitored. All other chemo treatments will be administered in the outpatient setting.

Given the new therapy decision, Dr. Chang still feels that Aiden should respond quite well to treatment – chemo, radiation and surgery. He also emphasizes that this decision is not based on anything new; a more conservative approach is just being employed. RMS in the diaphragm is very rare and we do not want to take any chances in regards to treatment, under treating Aiden could result in future recurrence.

Aiden has been responding to chemotherapy very well thus far; children truly are resilient. His strength throughout this whole ordeal is awe-inspiring. He is such a happy baby and continues to be the rock for Chris and me. I cannot help but smile when I see his chubby cheeks and wide-mouthed grin. He recovered so quickly after intubation. We were on the HEM/ONC floor only four nights before Dr. Chang decided to send us home.

This past Friday, Aiden was discharged from the hospital and we all headed home as a family. Since then we have been catching up on sleep and trying to find some semblance of our new normalcy. On Monday, Aiden, Chris and I headed to the Children’s National Medical Center outpatient office for Aiden’s scheduled chemotherapy treatment. Unfortunately, his port was not drawing back blood yet again. It is essential that Aiden’s port works properly. Dr Chang contacted the pediatric surgery department at Fairfax Hospital and scheduled Aiden for Mediport replacement surgery.

Aiden will be heading to the operating room tomorrow morning (his third surgery this month). He will get a new port and then we will travel to the Children’s outpatient office for chemotherapy. Though Mediport surgery is very quick, I am upset that Aiden has to go through it yet again. Please think about my little guy tomorrow and, as always, keep him in your prayers.

Love,
Leslie and Chris