After weeks of waiting and testing, we had an answer. Rayna had a bleed in her brain. But first, let me tell you about her initial procedure on this road to diagnosis. For several reasons, it unexpectedly finished late in the afternoon, which meant an overnight stay in the hospital was necessary to monitor her. This news brought more challenges as we had another child waiting at a friend’s house, who needed us as much as Rayna, just in different ways. Despite knowing Rayna’s sister was in excellent hands with her friend, Jamie, and her mother, Harriet, we worried. We wanted her to come home to be with at least one parent who could tuck Tovah in her own bed, squeeze her a hug goodnight, as she'd snuggle under the covers and cuddle with her own stuffed animals.
Little did we know we would be searching for the best words to tell Tovah that Rayna’s test showed a large mass— mostly likely a tumor, and most likely malignant— and hopefully without saying those scary words that I could barely utter to myself. Add that Rayna needed to return to the hospital for a biopsy. For several reasons, including preparing for tests, we needed to wait a few weeks, and it would require an overnight stay. Tumor? Malignancy? Another overnight stay?
It felt like too much for us as parents to handle alone.
Time to call in the troops: a child psychologist. She answered our multitude of how’s, why’s and when’s. She helped us prepare our conversations with both our daughters keeping specific notions in mind, such as telling the truth, using simple, age-appropriate explanations, plan for dialogues, decide when and where, give time to process, ask about feelings, etc.
“Rayna, sweetie, the doctors…helping you.”
“Tovah, honey, Rayna has a problem that needs help to…we are working on…We are all sad…we hope…will be better.”
For the next few weeks, I somehow managed to get up every morning, go about my business for the day, go to bed at night, and do it all over again the next day….Yet I had friends, family, and professionals surrounding me with love and support, a wonderful elixir.
The day of the biopsy finally arrived and surprisingly brought the need for our next age-appropriate explanations, this time through smiles and happy tears.
“Rayna, we can go home…. You don’t need another test.” Then to Tovah when we picked her up from kindergarten, sharing the news that made her smile, too.
What brought those tears and smiles? Her dad and I were informed about an experimental diagnostic test that had just arrived on the horizon, and was to be conducted before proceeding with the biopsy. This innovative test proved Rayna's mass was definitely not a tumor; albeit still a serious condition. Details of what transpired that day are intriguing. But for now, this new twist in Rayna’s journey was such a relief that I broke into a dance on top of my coffee table, of all places. That night we all snuggled in our beds, comforted by hope and blessings.
