Rhabdomyosarcoma

Today we met with Aiden’s Oncologist, Dr. Patrick Chang, to go over the results of the tumor biopsy. He has a cancer called rhabdomyosarcoma (RMS) which is a type of cancer that occurs in the soft tissues of the body like muscles. Aiden’s tumor grew out of his diaphragm and reached just under his right lung. The tumor started bleeding which is why the area surrounding his right lung looked hazy on the x-ray taken last Sunday (air shows up black, tissues are organs look gray and bone is white). Thankfully, this bleeding also caused Aiden’s respiratory rate to increase which caused us to make a trip to the hospital.

During surgery this past Tuesday, Dr. Allyson Askew, our pediatric surgeon, cleaned out the blood filling his pleural cavity and inserted a chest tube to help with post-operative drainage. She also sent a piece of the tumor to pathology for diagnosis. When Aiden left the operating room he was sent to recovery for a short time and was then transported to the pediatric intensive care unit (PICU). We are still currently in the PICU as Aiden is not yet able to breathe on his own. All patients that are incubated receive a daily chest x-ray to make sure that the tube does not shift. This x-ray also helps us monitor his pleural cavity and right lung.

Aiden is currently suffering from SAIDH which stands for Syndrome of Inappropriate Antidiuretic Hormone. Basically, Aiden’s body is retaining water so he has fewer wet diapers and a slightly puffy appearance. Since we are not seeing improvement on his daily chest x-rays, we think that SAIDH may also be contributing to fluid build-up in his right lung. The composition of our lungs can be compared to a sponge – when dry, it is light and airy, but when the lung is wet, it is very heavy. Aiden is now receiving diuretics four times a day and he is already showing improvement. Hopefully his chest x-ray tomorrow will display similar results! I cannot wait for him to be off the ventilator. Some children can tolerate breathing tubes, but Aiden does not appear to be one of them. He does not like it one bit so we are keeping him well sedated until he is able to be extubated.

Yesterday afternoon Aiden received a bone scan which is a nuclear medicine study. He was injected with a radioactive tracer which goes through the blood and then into the bones. A special camera then took pictures of his cell activity. This scan can show if cancer is present in the bones. We heard soon after the study that his test had negative findings – no cancer was present in his bones. Aiden then received another bone marrow biopsy. During the first biopsy, Dr. Chang was only able to obtain a small sample so he decided to perform it again in hopes of gathering two larger samples. He was successful in doing so and we hope to hear those results tomorrow. PLEASE PRAY that the pathologist finds no presence of cancer in his marrow. Should this test come back negative, we are pretty confident that he does not have metastatic disease. (A CT scan was also performed earlier this week which showed no additional tumors.)

If the bone marrow test is negative for cancer, Aiden’s prognosis is extremely promising. We are most likely joining a clinical trial which is researching rhabdomyosarcoma. It is important to Chris and me to do what we can to help future children that are also diagnosed with RMS. I won’t go too in depth regarding treatment plans as it is very dependent on the marrow results. Regardless of the marrow findings, though, Aiden will have to get several months of chemotheraphy. Once he is a bit older he will also need radiation therapy treatment, which will most likely take us to Boston. Right now, though, we are very hopeful and doing what we can to remain positive for the sake of our little man.

Aiden is a fighter and will make it through this – we all will. Cancer has now touched our lives, but it will not beat us. Aiden, Chris and I are up for the fight and nothing in this world will be able to stop us. Love and trust in God is what gives us hope. Thank you all for your prayers and kind words. The support continues to astound us – we are just so grateful for each and every one of you. Aiden is our everything and I look so forward to seeing his sweet gummy smile again very soon.

Please keep the prayers coming. Thank you again.

All our love,
Leslie and Chris