On Friday October 1, doctors found a mass around Keira's adrenal gland and believe this to be Neuroblastoma, cancer of the nervous system, a very rare form of cancer that only affects only 500 children a year in North America. This cancer can take one a relatively mild form, which remains isolated to one specific region or mass, or a more aggressive form which can quickly metastasize to other areas of the body. This cancer also has had a secondary effect (known as OMA) in Keira's body, which is to create antibodies to attack the cancer, but because the cancer is associated with the nervous system, these antibodies start interfering with nerve/brain function as well (and it is this secondary effect which is actually causing Keira's motor coordination issues).
The good news is that doctors believe they've detected the Neuroblastoma relatively early in Keira. The tumor is relatively small and it appears to have remained isolated to just the adrenal gland, which is hopeful that it is more of the mild form.
The treatment plan will entail a number of steps that will take place over the coming week, but it will be some time before we have all the information that will ultimately define the course of treatment.
The first step is to remove the tumor which we're hoping will happen on tomorrow (Monday) morning. Also during the surgery, they will collect samples of bone marrow and lymph nodes to see if the cancer has spread beyond the adrenal gland.
Then the tumor, bone marrow, and lymph node samples will be analyzed to determine whether we are dealing with a mild form of Neuroblastoma or a more aggressive type, and whether the cancer has spread to other ares of the body.
In parallel we will begin to understand whether Keira's neurological symptoms (OMA) react to the tumor no longer being in the body. This part is much less understood as there are roughly about 10 OMA cases a year in North America. The hope is that after the tumor is removed, the auto-immune antibodies abate naturally and/or with added drug treatment.
In about a week's time, once we see the analysis of the tumor and cell samples, as well as how Keira's OMA is reacting, we will have a better understanding of what the longer term treatment course will look like (whether that involves chemotherapy, what dosage, and/or additional treatment if the cancer has spread).
Right now we're focusing on keeping Keira happy and and smiling as she gets prepared for surgery.
Keira is surrounded by lots of friends and family right now and all the love, support and encouragement coming in from all over is inspirational to us. Whether it's dropping by, sending an email, voicemail, or even a text message, we see and feel the support around every corner and it makes it impossible for us to even think about the negative.
Thank you all for your continued support as we begin this fight.
All the love,
Crystal & Naveen