Writing about our journey with Neuroblastoma cancer is a little bit like writing a deranged love story. Every little part is etched into my heart and my soul. I remember every step of this – good and bad. It is our story and our life. Thank you for letting me share it with you…
Norah is our second child, our feisty little daughter who arrived 14 months after her older sister, Evelynn. From the beginning Norah had a loud laugh and voice and was always in charge of her older sister. She was and is the most loving and adorable little girl. She was so funny and from an early age would do things that would have my husband and I doubled over in laughter. Norah and Evelynn truly are the light of our lives. When Norah was 2 years and 7 months old, she started behaving differently – crying more, not eating, not sleeping well. I saw these signs and figured it to be an ear infection. Off we went to the pediatrician for a visit and antibiotics. The medication helped – but soon Norah was back to not feeling well. I assumed she had not gotten over her ear infection and another round was prescribed. The pain continued. Over the next 3 weeks we saw our pediatrician 4 more times, had 2 x-rays taken, saw an ENT specialist and went to have sonogram images taken of a concerning area before ending up on the pediatric floor of our local hospital where we were told we would remain inpatient overnight so that full body images could be taken the next day. My husband went home to pack up the items we would need for an overnight stay and he also needed to get Evelynn packed and settled at her grandparent’s house. I was in a hospital room alone with Norah when one of the doctors came in, put a piece of paper in front of me and asked me if I knew what “that word” was. The word she pointed at – Neuroblastoma. In a shaky voice I said “Cancer?” She said yes. And I said, “Kids die from cancer!” and her haunting response was: “Yes some do.” That is how I found out Norah had cancer.
The rest of the evening was pretty fuzzy for me – I remember the doctor praying over us and then telling me that our local children’s hospital (a 3.5-hour drive) would be sending a plane down to pick us up. I looked over at my sweet little girl who was playing peek-a-boo with me and wondering how on earth can she have a tumor in her body? It was surreal. Then I had to make the worst phone call of my life. I had to call my husband and tell him what the doctor had told me. He was at my parent’s house and his mom was there too. Everybody was in stunned and heartbroken and scared. In one instant we were broken. Several hours later we were at the children’s hospital talking with pediatric oncologists (I didn’t even know there was such a thing!) and we were told they felt with 99% accuracy that this was neuroblastoma but only a biopsy could confirm this. A surgery date was scheduled for 8 days later so they could remove her tumor and we were sent home that day. The date was November 24, 2015. This was the day we became cancer parents and our lives were forever changed. Unfortunately, Norah’s body had different ideas and we were back at the hospital 5 days later due to another tumor growing behind her eye – paralyzing her eye and face in less than 24 hours. Chemotherapy began immediately and I never felt so physically ill and angry in my whole life. Watching your 2.5-year-old baby sleep while chemotherapy is pumped into her little body – that’s a feeling I cannot explain. It’s a helpless feeling on a whole other level. I had never experienced this kind of sadness. It shook me to my core. I couldn’t talk to or look at anyone without crying. My husband and I cried for weeks. We found it difficult to talk to anyone and couldn’t reach out for the help we desperately needed. Fortunately for us, there were people put in our lives at the right place and at the right time. During the entire 4+ years we’ve been on this journey, the amount of support we have received has been truly breathtaking.
The first line of support came from the nurses at the children’s hospital. The nurse who was there the night we came in with Norah is someone we are still in touch with. We’ve had many conversations during Norah’s time inpatient and she became someone that I looked forward to seeing even though I did not look forward to being inpatient in the hospital. There were days when all I could do was cry because I missed my “old life” and I missed many important days while inpatient. We missed celebrating Christmas together the year Norah was diagnosed – we ended up celebrating in January. I missed Evelynn’s 4thbirthday because I was inpatient with Norah. I missed celebrating my husband’s birthday because I was inpatient. We missed celebrating my father in law’s birthday – his last one with us on earth – because we were getting treatment. I missed many other family get togethers and missed out on time with my friends. But I feel that the outreach from everyone has made up for that.
Norah got her strength back, and by extension so did my husband and I. During the first two years of treatment, Norah received 5 rounds of chemotherapy, had 2 surgeries and 6 rounds of immunotherapy before we transferred halfway across the country where, for the last 3 years, Norah has been seen by the leading Neuroblastoma specialists. There, she received 5 rounds of immunotherapy, 22 rounds of radiation and was on a specialized vaccine for neuroblastoma when, sadly, we received the news that she had relapsed. Her cancer was back. It was not as widespread as her initial diagnosis, but the news came out of nowhere and it took our breath away. Once again, we felt helpless, defeated and broken. But we weren’t alone! So many people reached out to us, wrapped their arms around us and held us up because we couldn’t do it ourselves. During relapse treatment we were under the care of a well-established pediatric oncologist in town. His office was so much fun for Norah – there were endless amounts of toys, movies, Barbie dolls, ride on toys, a slide, a playhouse… it was not a normal doctor’s office. She actually looked forward to going! Our doctor and his nurse welcomed us with loving arms and helped us to be able to look into the future – Norah’s future – when we felt we couldn’t do this again. Their care, kindness and understanding are what helped us through the second roughest moment in our lives, and I will never forget that. The office had many visitors and other patients – people who brought their therapy dogs in, other patients who became close friends to us, a gentleman who runs an organization for kids with cancer – without these people shining a light onto our lives, it would have been a struggle to smile.
Along the way we have met so many families, each fighting their own battle. Some are cancer families, some are not. But we all are in the same boat. Desperately wanting to make our children better and knowing we would go to the ends of the earth to do that. These families have been a constant support for us – even though they had their own difficult moments too. Our children have played together and established friendships. We have cried on each other’s shoulders and celebrated in the victories. We have celebrated new babies brought into the world and felt devastated when one was gone. The families I’ve met along the way are some of the most dedicated and loving parents I know, and they will forever be dear friends to us.
Our local community has been very supportive for us as well – we are the 4th neuroblastoma family in our town and when the news got out about Norah’s diagnosis, the prayers began. Dinner deliveries began. Offers to take Evelynn for a play date so I could catch up on sleep came often. Groceries always found their way into our pantry. We were never without someone checking in on us, doing a fundraiser for us or just sending a text to say, “I’m thinking about you, do you need anything?” Evelynn’s school has been largely responsible for helping me feel comfortable when I had to leave for 2 weeks at a time for Norah’s treatment. The principal, secretaries, paras, other parents and her teachers all made me feel at ease knowing that Evelynn would be looked after, taken care of and given hugs if she was having a sad day. She had plenty of those. She missed her mom a lot. But I knew that there were many people willing to give hugs and spend a little time with her if she was upset. I was gone for a total of 18 weeks in 2018 alone, and Evelynn made it through with the support of her own little village at school!
Over the years our village has grown so much and spread across the nation. There are people constantly reaching out to us and asking how Norah is doing. Genuinely wanting to know so they can continue specific prayers for her and for our family. People we have never met in person have sent gifts for Norah’s birthday, Christmas cards for both our girls and have sent postcards just to say Hi. Other families we haven’t met before have adopted our family for Christmas for the last 3 years – getting gifts for the girls so that the can have a great Christmas Day. One day last year, during a particularly rough treatment week, I posted on our Facebook page and asked for everyone to send in silly jokes to help Norah cheer up and the amount of jokes we got was staggering! It always amazes me how GOOD people are – people want to help – people want to help you heal – physically and emotionally.
We are so thankful for every single person along our journey. I don’t know what we would do without each and every one of you.