Letty - Neuroblastoma

Approximately eleven months after my second daughter, Alette (Letty), was born, on April 19, 2023, I found a hard lump in her abdomen when changing her diaper. After months and months of little to no sleep, sweaty naps in our arms, and a couple visits to the doctor with helpful information, I had resorted to trying things such as massaging her tummy to try to alleviate what we thought might be some sort of digestive discomfort. That day, I felt something. As soon as I felt it, I think I knew. It's almost as if she did too, in a way. She stopped crying, she watched me, as if I finally understood what she was trying to tell me. I called my husband, and he told me to call the doctor and see if he could see her, "We'll figure it out." I didn't realize how many more times I would have to hear him say, "We'll figure it out", over the next two years.

We saw the doctor the next afternoon. He hesitated, before finally looking at me and saying, "This isn't anything I've seen before...it definitely doesn't feel like gas or constipation. I'm going to order an ultrasound to see if we can find out more." I took her for the ultrasound, and then we went home. We had just moved into the house three weeks before Letty was born. It was approaching one year since we had moved in, we hadn't done much to make it ours yet. I had seedlings in a little plastic covered greenhouse inside, ready to try to make a garden in the backyard. The phone rang an hour after we got home. "Hello, Kaycie?..." and a long pause. "You need to pack some things and get her to the Children's Hospital in Winnipeg as soon as you can... It might not be anything, but it looks like it could be something more serious. I'm really sorry." 

We sat in the Children's Emergency Department - almost two hours away from home - for hours. They put us in a separate room after a while, and we waited more hours. So long that we started to wonder if they'd forgotten about us. When a doctor finally came in, it was something about finding a room for us for the night. They brought us up the elevator, then into a dim, quiet department, with several nurses and a student doctor following us into a room with a crib. The student doctor finally looked up at me, and quietly said, "You know why you're on the oncology floor...?" I looked at him blankly, and shook my head. But oh, the knowing. "So...we don't usually bring anyone up to the pediatric oncology floor unless they have or we suspect they have cancer."

I couldn't hear or look at the word cancer for the next solid month or more. We spent the next six weeks in the hospital, with only a couple very brief overnight visits to the Ronald McDonald House nearby. The oncologist assigned to Letty's care told us that it appeared to be neuroblastoma, but that they couldn't confirm it until the biopsy and genetics results had come back, which could take weeks. Scrambling to arrange care for our three-year old daughter, for my husband's oldest daughter (my stepdaughter) who lived primarily with us, for our dog and cat, for our house, etc. After the first week or so, with no answers and very little communication at all about what was happening, my husband began to work again, remotely, from the hospital. MRIs, x-rays, surgery for the port-a-cath, biopsies... Our now one-year old daughter was traumatized, crying every time someone came into the room. She stopped smiling and playing, refused to eat, choosing instead to climb us like a monkey any time someone came near, clawing and screaming to get away. 

My coping mechanism was anger. I often had to leave the room to avoid trying to physically protect her. My husband could tolerate being there, so he often stayed to help with "small" things. Everything felt like a huge deal. Both of us agreed that we had never felt so alone. We were ships passing in the night. Since we couldn't both stay the night with her, he would stay with her overnight, managing all the wake-ups and check-ins. I would leave the hospital in the evening, when visiting hours ended, and go back to the Ronald McDonald House, to get laundry done, update the blog we'd had to start to answer people's questions, pick up groceries, assess our needs, check in with our other kids, arrange things with anyone trying to help us with mowing the lawn or taking care of the animals, etc. During the day, he would nap and try to work. I would try to juggle all of the sudden "appointments" (a nurse or health care aide would simply walk in and say we were going to get a scan or test done, now) and desperately try to get her to eat. We struggled to find any positivity in...well, anything. But boy, did we try for our kids.

Days before we received the official treatment plan and results of the recent MRI and genetic testing, my husband's employer gave him an ultimatum: either come back in to work at least 4 out of 5 days of the week, or resign from the position so they could hire someone who could be in the office every day. The next morning, he received an email letting him know that he was being terminated from his position, long ahead of the week-long deadline they had given him to make a decision. The next weeks forced us to make impossible decisions - could we still find a job while in the hospital, should one or both of us be looking for employment (I was unemployed at the time, due to COVID, having two babies), would we be able to continue to afford our house, would we need to rehome our pets,...what now? 

Knowing we would need to be in the city often for treatment, and feeling stuck, we made the decision to sell our house. We were finally able to go home in between chemotherapy treatments, but had to stay in the hospital for a week or more at a time due to her age and the distance back home, and she had a feeding tube that we had to manage at home. There were so many constant changes, in her treatment, in where we stayed, in what we were told. Then the oncologist let us know after two rounds of chemo that the tumour had shrunk, and we were going to "wait and see". The outlook was positive from their end, especially because the genetic testing showed her cancer to be more "low-risk". Our next MRI would be in a few months, and there was surgery booked in September to remove the port. But within six months of going into the hospital for the first time, we had sold our house and needed to move. Finding a rental was incredibly challenging, with no income, two kids plus the two other kids that stayed with us on weekends when it was possible, and two animals. 

My husband finally found work again. We moved into the new rental, and went back in for her next MRI in November. They told us the tumour had grown. We went back in for surgery to put the port back in almost immediately, and she began chemo again the week before Christmas. After four more rounds of chemo - with no changes in the size of the tumour - our oncologist had gone on maternity leave, and the new oncologist told us that the board had decided on surgery as the next step in the treatment plan. Surgery - something that they had originally told us was too risky, due to the proximity of the tumour to her spine. On her sister's birthday, Letty went in for surgery to remove what ended up being about 95% of the tumour in her abdomen. It took our feisty little fighter three days to "recover" from the surgery. 

Since then, we have gone in for MRIs and bloodwork/urine tests every few months, and the remaining portion of the tumour shrinks marginally each time. She is spicy and full of life and character, bouncing around as if nothing happened. But questions appear, and memories occasionally shock through her big blue eyes when something triggers them, psychological traumas rear their ugly head whenever we go for medical appointments. Her siblings, now 14, 11, and 5, rarely ask or talk about what happened during the hospital visits and treatment. And my husband and I are only now starting to be able to talk to each other about the impact that cancer has had on our family and our life. The silent fear of "what if it grows...again" is never spoken out loud. 

In September 2024, we bought a new house, and have started to try to peel apart the layers of the "what just happened". We now carry a different knowledge and weight, and a new perspective. There is so much grace for other people and the things that they are going through, and so little understanding from others of what we went through, what we still live. It crumbled everything around us, and everything that we thought we knew about our life. No one in our world at the time could relate. There really is no "normal" to go back to anymore.