Thank you for coming to read Mila's story. Mila was diagnosed with a rhabdoid tumor on June 24 and will receive 8 rounds of chemotherapy to eradicate the disease. We will provide updates here on how she is doing and invite you to add to our strength and optimism by sharing your thoughts in our guestbook.
On Memorial Day weekend we noticed a small lump on Mila's right shoulder blade. Within 4 weeks it had grown to the size of an egg. It was surgically removed on June 19 and we were told the tumor was malignant. On June 24, the tumor was identified as a rhabdoid tumor, a rare form of children's cancer. There are about 15 cases each year diagnosed nationally.
Since the surgery, Mila has had a bone scan, an MRI and CT Scan. All of the imaging came back NEGATIVE! No signs of tumors elsewhere in her body so that is great news. We were also very pleased to hear that the tumor came out very easily during surgery (was not "sticky") which means the surgeon is confident that there were no parts of the mass left behind.
The pathology results on Mila's tumor cells indicate they are missing part of chromosome 22 which is what is known to cause this type of cancer and defines the mass as a rhabdoid tumor. Mila's blood has been sent to a genetics research lab at Children's Hospital of Philadelphia to an oncological geneticist to determine whether the mutation related to chromosome 22 was isolated to the tumor cells or whether it is in her body/bloodstream as well. Sasha and Erica have also submitted blood samples to determine if they "carry" the mutated chromosome (just because someone carries the chromosome, it doesn't mean cancer will appear). This blood work will determine whether the cancer formed in Mila because of a genetic mutation unique to her or whether it was passed down from Erica and/or Sasha.
Mila's doctor is Jeffrey Dome (http://www.childrensnational.org/FindADoctor/DoctorProfile.aspx?DoctorID=2235&Name=Jeffrey%20Dome
), Chief Oncologist at Children's National Medical Center. Dr. Dome is a research specialist in pediatric solid tumors of the kidney, of which rhabdoid tumors is one. He is also Chair of the Children’s Oncology Group study for rhabdoid tumor (an international study that 200 children’s hospitals participate in) and recently Chaired a national meeting on rhabdoid tumor held this past February.
A piece of the tumor along with the pathology slides has been sent to Children's Memorial Hospital in Chicago for a second opinion (Dr. Elizabeth Perlman) and Sloan Kettering in NY (Dr. Nancy Rosen) is providing a second opinion on the CT scan results. Her materials will also go to Dr. Jackie Biegel at Children's Hospital of Philadelphia who is in genetics/pathology.
Although Mila's tumor was very self-contained, rhabdoid tumors have proven to be very aggressive and the chance of mutated cells still existing in her body and another tumor forming is great enough that Dr. Dome is recommending 6 months of chemotherapy treatment
The treatment plan is 8 cycles with each cycle happening every 3 weeks. Mila will be admitted to the hospital for each round of treatment for 3-4 days. Every 3 months, they will perform all of the scans again to see if a tumor has formed in other locations or reformed in the original location. Dr. Dome is confident that if Mila does not have another tumor form in the next year, she will be fully recovered.