“She Loves Life” as told by Mom

Nora and her dad in the hospital

We took her to the emergency room right away and they did a CT scan. 

They had her in a bed and she wouldn’t let me leave her side. It got scarier and scarier pretty quickly. They brought in a bubbly nurse to sit with Nora and asked my husband Alex and me to leave the room and come with them. I think we knew at that point that something was seriously wrong. They took us into a room and they said they’d found a large mass on her brain. They didn’t know what it was, but they brought an oncology team right away to meet us, so we knew that it was cancer. 

It was a Tuesday night and they scheduled brain surgery for Friday. Nora deteriorated very quickly. By mid-day Wednesday, she started becoming not very responsive. The neurosurgeon came in and said, “We can’t wait until Friday.” They operated on her right away and got the whole tumor out, which was such a blessing. We naively thought, “Great, they got the whole tumor out, that means the hardest part of our journey is probably over.” That’s when we met Nora’s oncologist and they let us know the type of cancer. ETMR (Embryonal Tumor with Multilayered Rosettes), super rare, super aggressive. They said that her tumor was probably only growing for about six weeks, and it grew to the size of a navel orange. There are no protocols to follow for ETMR. The cases that the doctors had dealt with had not been successful.

We were dumbfounded. ETMR. We’d never heard of it, I think most people haven’t. Brain cancer. How on earth was this our real life? We went with the protocol that included 51 weeks of intense chemotherapy and proton radiation. But, they didn’t have proton radiation in Colorado, so we were going to need to travel to Children’s Hospital in Cincinnati for six weeks of radiation, with our now four-month-old baby Mac. It was survival mode. 

After we kind of understood this was going to be a fight, and that we were not out of the woods, they operated and put a port directly into her brain. Nora has a chest port where she received chemotherapy, but to get past the blood-brain barrier, they felt like they needed the second port on her head to get chemo directly into the ventricles in her brain. 

We had no idea what to expect, but chemo was worse than anything I could have ever imagined. Cancer is bad, but chemotherapy on a two-year old is horrendous. She didn’t eat. She lost about four pounds and when you only weigh 30 pounds, that’s a lot. She had mucositis, was in immense pain, and on a morphine pump. And, she still had a pacifier, like she was a baby. After 11 days inpatient at the hospital for the first round of chemo, we came home and I became a home nurse, giving Nora medicine through her port to get her stem cells to produce more quickly. She had a g-tube placed, so I was giving her feeds through the tube. I was learning all about her cancer, all of the different chemos she was on and their side-effects and how to use these pumps to give her medicine. I was new to identifying as a cancer mom. And I had a baby at the same time. And a husband. 

Nora bounced back, as kids do. Then we started the same chemos all over again, and we were back in the same position. She was even worse the second round. She didn’t walk, didn’t sit up, didn’t talk, didn’t eat again, and had to be on oxygen. She was pale and limp and her spark was just gone, and there was still a long road ahead of us. This was our real life. 

Our baby Mac was refusing bottles, he wouldn’t take a bottle from anyone. He had to sleep at the hospital with Alex in one of the family rooms. Alex would bring him to me every four hours to nurse. I was nursing Mac, and Nora wouldn’t let me leave the bed. I was comforting Nora, nursing our baby boy and I looked over at my husband Alex and I asked, “How is this our life? How did this happen?” Like that, it happened. Just like that. And now we have a before cancer, and an after. 

When they got the tumor out, Nora lost the use of her muscles on her left side. She couldn’t sit up on her own. She had to relearn how to walk. She still doesn’t really use her left hand. We go to physical therapy, occupational therapy, and we are just so amazed by what she’s been able to do in her resiliency. 

We have one more round of chemo, and this is the life she knows. Nora knows her mom and her dad and her baby brother, and that’s what she needs to be happy. And she is. She just has this happy glowing light about her. Whenever we go to the hospital and clinic, when she’s walking with her little crown on, she likes to hear her voice echo in the lobby and she’ll say, “Hello! Hello!” And, everybody always stops and smiles at her and then she gets that little encouragement to do more. The happiness that I have just watching her light up the lobby of the hospital, I mean there aren’t words to describe it. We’ve had this horrible, horrible, devastating, unimaginable life event, but gosh we’ve been able to find really, really true joy watching our little girl be this resilient little being. 

Nora is now three. She likes to play with her baby brother. And even though they are almost the same size, she still calls him ‘my baby.’ She loves to play dress up. She likes to sing, and she loves the color pink and sparkles. 

It has been an adjustment. I remember at the beginning everyone would say, “You’ll get used to your new normal. You’ll figure out your new normal.” And they’re right, we have. It’s not the simple life that I had envisioned, but we’re figuring it out. I took the year off of work, because when Nora is getting chemo we’re at the hospital for six-hour days for her infusions. Alex had to take the six weeks off that we were in Cincinnati, so that’s definitely been an adjustment from two incomes to one. And now we’re a family of four. So that’s a lot of change. 

I didn’t even know what I needed. People were asking, “What can I do to help?” but I didn’t know. At the end of Nora’s first cycle of chemo, I got a call from Brooke at There With Care. They knew all of those things that I probably needed help with. I was like, “Oh yeah. I do need that. I do need cleaning supplies. I do need anti-bacterial stuff at my house. I do need groceries, because I haven’t even stepped foot outside of the hospital in 11 days.” It was so nice having someone that ‘got it.’ 

On the first grocery delivery, I met our volunteer Chris and she has been delivering our groceries since the beginning. She knows Nora, she knows our family. She is this ball of positive energy and I look forward to her deliveries every time she comes. It’s such a vulnerable time in our house right now, so, to open it up to a stranger doesn’t always feel great. But, from the second I met her it was no big deal, I was like, “Come on in, you get this, you’re here to help.” I can’t say everything’s going to be okay, but it’s shown some light on this dark journey. 

When Nora gets a fever, we immediately have to go the emergency room and if her counts are low we are immediately admitted as inpatient. It’s one of those things where you need to have a bag ready. But when you’re diagnosed with this and you go from brain surgery, right into chemo, you don’t have time to have a hospital bag packed. There With Care brought a toiletry bag for me, and one for my husband, so that when we quickly had to go to the hospital, we would have those things ready. 

When Nora’s counts are low and she is immune-compromised, we have to be very careful about germs and who comes in the house and just keeping everything sanitized. They knew that and would send hand sanitizer and anti-bacterial wipes. They put me in touch with cleaners who are aware of the situation and could actually disinfect our house. That was a huge anxiety on my mind, like how am I going to keep my house clean enough so that my immune-compromised child can live in it safely? There With Care helped us figure that out. 

It matters, because any sense of normalcy, any family time that we get to have is so meaningful to us. If I can just put a Crock-Pot meal in and then spend time with my family instead of cooking, instead of grocery shopping, it means the world to me. Every moment that I get to spend with my family is so precious. I can’t take Nora into the grocery store when her counts are down. We can’t do the things that a normal family does. It is so, so important that I get to spend time with my kids. Because when we’re in the hospital, Mac’s not there, so when I am home, I want it to be about our family unit and making memories. I don’t want to be worrying about, “Oh our cupboard’s bare. Oh, I don’t have anything for dinner.” That’s taken such a huge weight, burden, off of my shoulders, so that I can be the mom and I can be interacting with my kids. Because the little, everyday moments now have so much joy in them. And I don’t have to feel guilty about not having a home-cooked meal. 

We have also gotten help with gas gift cards, which have been such a lifesaver because we are on a restricted budget now that we have one income. There is a lot of driving back and forth from appointments, so the gas cards have been such a huge help. A huge bright spot in our partnership with There With Care was Nora’s 3rd birthday celebration. I went back and forth on if we were going to celebrate or not. She had a pretty big MRI scheduled the same week that we were all feeling very anxious about. They asked us if I would like a cake to celebrate, so we decided to have a small celebration. What was delivered to us for Nora’s birthday made me cry happy tears. The most beautiful unicorn cake I have ever seen along with candles, a birthday banner, tape, streamers, and a birthday gift. I wouldn’t have had the time and ability to get any of those things myself, but Nora had the most perfect 3rd birthday celebration and she still talks about her unicorn cake. 

The things that I don’t even think about, There With Care has thought about. They have really shown up for us and allowed us to be a family, and they have helped us to keep going. 

Nora is not the same. I had to grieve the little girl that I had. She is changed. She will have struggles with late effects from chemo and radiation because her brain is developing. I remember asking the radiation oncologist, “Can we wait until the end of her treatment until she’s three?” and he didn’t hesitate. “Not with this cancer.” 

Nora is amazing. And she keeps us going every day with a smile on her face. You can’t stop her. She gets back up and she’s got a smile on her face. If she walked into a room, she would light it up. She loves her parents. She loves her brother. She loves life. And since the beginning, she’s come back, and the light and glow about her is even brighter. She’s just this special kid, and that’s what keeps all of us going. 

There With Care is proud to partner with The Rocky Mountain Children’s Health Foundation in caring for families. For the past 10 years, The Rocky Mountain Children’s Hospital Foundation has helped There With Care bring crucial support to hundreds of families in a medical crisis by providing them with emergency rent assistance, auto repairs, and more. We could not be there for these families without the meaningful support of the Rocky Mountain Children’s Health Foundation, who understand at heart, the needs of the families we serve. We are grateful for their trust in our work and for their exceptional partnership in care.