What a roller coaster of emotions kind of day. I barely slept last night thinking of the worst case scenario. Ellie has been laying around sleeping so much and throwing up every so often. My mind races right back to her original diagnoses when she was six and her brain was filling up with fluid. Last night the doctors contacted us to let us know that they wanted to add a Quick MRI of the ventricles but we would have to go to the outpatient center in Lincoln park prior to our appointment. We left the house this morning at 8am and made great time. We arrived really early to her appointment and they took us immediately. I was so excited thinking ok we can find out even sooner what is going on here.
We picked up a quick lunch and headed over to Lurie Children’s Hospital. When we arrived up on the 18thfloor Hemo/Oncology floor it was packed in the waiting room. It soon became apparent that we where not getting any results early. I was so sick to my stomach with every scenario running through my head. What are they going to tell us where do we go from here?
We where lucky enough to run into old friends from over 20 years ago that are going through a similar situation with there daughter. It was so awesome catching up and helped me forget about what was to come for at least a little while. As much as it was nice to see our old friends its so sad that we had to catchup in a children’s oncology waiting room.
Finally, we where taken back to a room and we got to see both Dr. Goldman and Dr. Depatri. I was jumping out of my skin and quickly jumped to “We have several people waiting for a phone call so I am really anxious.” Dr. Goldman figured I was referring to the vacation with the family. He told us as far as him and Dr. Dipatri are concerned we are good to go. There is no overly concern with her scan. A deep breath of relief as finally some good news. Then the news continued to be good well as good as it gets when you are battling a Brain Tumor. We will begin Radiation for 6 weeks’ strait, Monday through Friday starting April 1st. We then met with the Proton Beam Radiation Oncologist to discus long term side affects and short term side affects that Radiation has to the brain. Who would of thought this would be the best option we have for moving forward. The good news is that Ellie does not have to do Chemotherapy at the same time as radiation. This is very good news for us. Ellie will complete the Radiation and then we will scan and if the tumor shows growth we will continue to chemotherapy.
In the process of all the genetic tumor testing they found the BRCA1 Gene, which is the breast cancer gene and could also cause childhood brain tumors. So we met with a genetic counselor to go over my side of the family and Dave’s side of the family’s history. Between us both I think we have hit every kind of cancer in both families except breast cancer. Needless to say we need to move forward with more testing. First they will be testing Ellie's bloodwork after they get approval and see if this Gene was mutated from her tumor or if it is in all of her blood. If its all in her blood, then Dave and I get tested and we see if the genetic testing shows for both of us and go from there. Just another thing to pay attention to and monitor. At this point I really think I need a frequent visitor punch card for doctors.
For now, we are taking the win today. Vacation is a yes we have one more check for approval before we leave but we are pretty sure there should be no problems with this check. Ellie only has to start with radiation, and the headaches and vomit they believe is caused by a medication she is taking so they will discontinue the medication and monitor her. After such a stressful day I have hit a wall and will be resting for now until tomorrows full day of appointments. Ellie also has school to squeeze in tomorrow. Thank you for your continued, love, support ,& Prayers #EllieStrong
A mother with a battle ahead of her.