The Day No One Wants To Have…
Since September is Childhood Cancer Awareness Month, we decided that we would discuss diagnosis day. Everyone has a day in their life that they remember more so than any other. Almost all aspects of life are different from before that day to after. For parents of children with cancer, that day is usually diagnosis day and not everyone experiences it the same way.
In Hudson’s story, Christina did a wonderful job explaining their emotions and experiences up to and including that day. WylieRae’s day was different. Prior to September 6th, 2019, the only concern we had had with her was that her cranial circumference was a bit large for her age. Her pediatrician wanted her to get seen by a neurologist just to make sure nothing was wrong. At the appointment with the neurologist, she started having some symptoms which were very concerning. Since it was a Friday, Wylie was ushered off to the ER so she could get an MRI. I remember sitting in the room and hearing the techs discuss that she had a tumor. My mind was kind of off in the distance wanting to believe it was someone else, but no one else was in there. Wylie screamed the whole time. We were taken back to the ER where not long after I could hear the doctors discussing the findings beyond the door. Again, it was maybe they were talking about someone else. It wasn’t until they immediately came into the room after going quiet that I knew it was her. After being told she had a tumor and severe hydrocephalus, the first words out of my mouth were about how long she had to live. I had to make sure that Amanda could come to see her. Most of the rest of the day is a blur. I was so distraught on the phone with Amanda that the neurosurgeon had to take it to explain everything going on. Wylie had to have emergency surgery. I wanted her to wait so Amanda could be there, but time was so vital. The halls seemed long. I had no idea where we were. After a few minutes, an OR nurse came and carried off Wylie in her arms. I had no idea if I would ever see her alive again. I felt so awful that Amanda couldn’t say goodbye.
It was Monday that Wylie would have a biopsy and further MRI scans. We were told afterward that she possibly had AT/RT with metastasis to her spine and dura. We were preparing to lose our daughter which had just come into our lives. There were several discussions that day including possible studies she could participate in. We mainly focused on what our wishes were concerning how far we would go and what we wanted to do when she eventually passed away. The next few days were making plans so everyone could say goodbye to Wylie and to possibly take her to go see the ocean. It wasn’t until almost a week and a half after we were told of her tumor, that we would get a phone call saying that her cancer was medulloblastoma, and there was hope.
Hollie wrote to us about her son’s day.
Zeke is 2 1/2 now and has Juvenile myelomonocytic leukemia (JMML). He is still taking chemo, but it is an oral chemo for right now. It started as a trial and are staying with it for now.
He was 6 weeks old when diagnosed, and we were in clinic when they told us. It felt like an out of body experience. I could hear them saying he had cancer, but I couldn’t believe it. I am pretty sure we both just started crying. Felt broken in a matter of seconds. They told us he was the fourth case at Duke in 20 years and then everything moved very fast from that point. It was survival mode for the first two years. Still feels that way!
Paxton was diagnosed with ETMR. Anna, his mother, shares their day.
Official day of diagnosis was 9/26/2019.
We had gone to see his PCP on 9/25 with some developmental delay concerns. We had a sinking feeling it wasn’t going to be good. Our PCP didn’t see anything that raised red flags for her because, of course, he wasn’t doing anything out of the ordinary at that appt. However, she had noticed his head size had gone up, so she directed us to the pediatric neurology department so they could look at him and give their opinion. Thankfully we got in later that afternoon.
After they did some physical testing and eliminated a few diseases they thought could be from his delays we had talked about (which he also wasn’t showing them when we were there in person), they decided to admit us so that they could get an MRI done on him. This was a very rough 24 hours waiting to get his MRI. They kept telling us not to feed him because he “might” be getting his MRI done soon, but we could give him juice and water. He was 10 months old…he didn’t drink juice or water yet, so he drank nothing.
We got a spot for an MRI sometime 9/26 in the later afternoon, almost 24 hours after being admitted. I just remember it being so incredibly hard to get a vein for sedation because of how little he had to drink. It was heart wrenching, and I couldn’t be in the same room. Thankfully my husband was in there with him as they tried…for a long time. They finally got it and got him off to his MRI. We waited, what seemed like days, for them to come get us. Once they did, they brought us back to his recovery room. As the doctor shared the news that there was a golf ball size tumor at the back of his brain near his cerebellum. Tears streamed down her face. Surprisingly my husband and I didn’t even cry. We went into straight fight mode and wanted to know what was next? What were the next steps and what was going to happen next? We were moved to the PICU that night. Close to midnight, they drilled a hole in his head for an external shunt to drain all the excess fluid. His surgery was schedule 4 days later.
Every family has a story. Next month we will discuss how this affects relationships with family and friends from both sides. If you would like to share your diagnosis story or discuss how your relationships have changed, please email us at amanda@wylieraeslove.com We of course will revisit topics from time to time as we grow.