On this day three years ago, we took my then 6 year old to the hospital for an MRI. She had been experiencing headaches, lethargy, lack of appetite and nausea. (PLEASE NOTE: THESE SYMPTOMS DO NOT ALWAYS EQUAL CANCER… I am not a healthcare professional. Please do not use our story to diagnose your child. If you have concerns, please seek professional help).
I had fought for that MRI. Her symptoms started Christmas day, almost a month before. I had taken her to the doctor, thinking he would order a vision exam or something like that. At that point, her only symptom was headaches. Her doctor believed she was experiencing anxiety and suggested seeing a mental health therapist.
My husband is a mental health therapist and he was not convinced. He asked that we wait. We tried some calming strategies at home… taking a time out from people, listening to music, wrapping up in a blanket. She began to frequently tell us she was “overwhelmed” and started spending more and more time in her bed.
The stomach bug hit our household and went through everyone. As with most stomach bugs, the majority of us bounced back fairly quickly. She did not. She continued to wake in the night throwing up. Her big sister who had just turned nine would frequently come and get me in the middle of the night to let me know her sister had been sick again.
I called the doctor over and over, asking at what point we should be concerned. He said it was likely a virus and to give it time. He said that as long as she had spurts of energy and would interact with us, she was ok. She was not ok. I remember talking to a nurse on the 24 help line who suggested keeping a headache journal. She said to track the headaches, noting foods eaten, activities, etc. I called the doctor again and he agreed to an MRI. This was on a Monday. I called the scheduling office and they said it would be at least two weeks. I told them that I did’t think we had two weeks. She wasn’t eating. She was staying in bed all the time. She needed to come in right away. They said the soonest they could do was Thursday. She was so sick and so small. I remember sitting up with her in the middle of the night that Tuesday and asking her how she was feeling. She said, “Sad.” We cried together as I held her close. I was scared. Something was not ok and I didn’t know how to help her.
Three years ago today, we drove to the MRI. It was the first day in a long time she had woken up hungry and asking for food. We couldn’t give her any because she was to be sedated for the MRI. She was tired and in no mood to play. The child life specialist kept bringing toys and play dough and bubbles. It was miserable. They finally took her back. I walked in with her and held her hand as they sedated her. I watched her fall into the deep sleep and went to the waiting room to sit with my husband.
We could hear the MRI through the walls. The loud banging and beeping it makes as it collects images. They called us back just before she was done. A new doctor was in the room. He said plainly that she had a golf-ball sized tumor in her brain. He said surgery was absolutely necessary. He said more, but I don’t remember what.
After that, everything moved quickly, but somehow also in slow motion. We went to the cancer center where a friend brought the other children to us. My daughter and I were to go in an ambulance to a hospital a couple of hours away. My husband would take the kids home and be with them as a snow storm was blanketing our town. By that point, news had spread. People were praying. Plans to care for our family were being made. I was heading into this next step alone with my daughter, but carried by the prayers of so many.
We went, she had surgery, the tumor was removed entirely, and it was malignant. A few days after surgery, she was back to herself. She was eating, playing, laughing… the color had returned to her cheeks. It seemed like all was ok, but we heard back from the oncologist with the pathology report that confirmed the malignant tumor… medulloblastoma.
We were sent to St. Jude Children’s Research Hospital to receive treatments. 30 treatments of radiation and 4 cycles of chemo. We stepped out of our reality and into a new one. It was like a cross cultural experience. We learned a new language… the language of cancer. We learned how to administer IV medicines. We learned new rituals and a new lifestyle. St. Jude is approximately 500 miles from our home in Western North Carolina. It is is Memphis, TN. I didn’t know that until we went.
Three years ago. It seems like forever and it seems like yesterday. I can remember the sights and smells and sounds. I can remember the terrifying ambulance ride and the minute or so in the PICU when we first arrived and they couldn’t wake her right away and how I didn’t realize I was holding my breath while I watched helplessly. I can remember it so clearly.
We finished treatement in August of 2016. For the next two years, we returned to St. Jude every three months for scans and appointments. We graduated to every six months this past summer. Last week, we went for her routine appointments. It is not so startling or scary now to fly to Memphis and ride in the shuttle to St. Jude. We are familiar with the process. We know the language. There is an ease to it all.
In the weeks leading up to these appointments, however, I experience extreme anxiety and what I believe to be Post Traumatic Stress Disorder that comes from being a care giver to my sick child. I relive the nightmare of it all in my panic attacks and fear its return. It is debilitating at times and makes me so angry. I chide myself for not being better… not getting over it and moving on. But what we went through and go through is not easily forgotten so I try to also give grace and rest.
I am a Christian. I am a firm believer in God’s sovereignty. I know firsthand that in moments of suffering and pain, we see the gospel and grace and hope in such a tangible way. I know that there is much pain in this world and that causes deep longing for the next where there will be no sickness and no death. I wrestle in the in between. I wrestle in the now and the yet to come. The knowing that pain and suffering are real and will come, yet there is a greater hope in it all and a peace to be had in light of eternity. I am at times comforted and at times terrified by the sovereignty of God.
One thing that God has continually taught me and drawn me towards in my adult life it to take one moment at a time… to not worry about tomorrow for tomorrow will worry about itself. I will rejoice that we walked away from this trip to St. Jude with clear scans… NED ( no evidence of disease). I will rejoice that in this moment, my daughter is strong and healthy. She has kicked cancer and moves forward with boldness and strength that I can only hope for. In this moment, we are ok.
Thank you for letting me process this anniversary here in the blogosphere. Thank you for taking the time to read a piece of our story. If you would like to see more about what a day at St. Jude can look like, go check out my Instagram pics from our recent trip with the hashtag #adayatstjude.