At the beginning of this summer, we had a truly special evening at the Ultimate Campout in Green Bay, camping on a football field right next to where the Packers play. The event was thrown by Northwestern Mutual for families affected by childhood cancer, to give them a night solely focused on fun and somewhere they can make connections with other families who share their experiences. I went because I wanted to give some the amazing families in attendance a platform to share their stories.
At first, it was intimidating to go up to the moms there and start a conversation. These are mothers who have had the worst cards dealt, but played their hands with an unfathomable amount of courage and strength. But then, a woman named Ashley approached me and told me that she was a fan of my Instagram account.
Ashley’s 7-year-old son Jackson was diagnosed with cancer in 2016. I asked her if she would like to be the first family I featured. Here is her family’s story, in Ashley’s own words:
“Jackson was diagnosed June 13, 2016 with Stage 4 rhabdomyosarcoma when he was 4 years-old. It began with a tummy ache that wouldn’t go away. Our pediatrician did an X-ray and noticed a large abnormality in his pelvis. I called John to come home from work to take him to the ER. I was home with our 6 week-old Avery and 2 year-old Macie, when John called a few hours later. His exact words were ‘Ash, it’s not good. Jackson has cancer.’ My first thought was disbelief. This doesn’t happen to us. The hardest part was accepting all the unknown. Jackson had so many tumors and wasn’t responding to chemo, so the only option left was experimental. We flew him across the country so he could undergo an experimental procedure with a specialist. The surgery involved cutting from the bottom of the rib cage to down below his waist. 188 tumors were removed. Then the surgeon ‘washed’ his belly with warm chemotherapy. We were all terrified, but Jackson acted like it was just another trip. He walked less than a day after his 14 hour surgery.
Seeing his strength and bravery was breathtaking. But the moment that really got me was a few months later. His teacher told me that in class, they were talking about people who were really sick or in the hospital for awhile, and his words were ‘I don’t know anybody like that.’ Amazing that his perspective was so child-like in the midst of devastation. Jackson’s diagnosis has dramatically affected my perspective on life and family. Especially since we don’t know whether or not his cancer will come back. I can’t get rid of clothes of his that are too small or any art projects that he’s made, because it’s always in the back of my head— if he isn’t here anymore, I’ll want everything. I like to think that I was always an easy-going person, but now, I truly appreciate what is important vs. what is not. That extra popsicle on a summer night or pushing bedtime back so we can shoot basketballs together in the driveway— these are no big deal, considering the smiles in return. Time is something you’ll never get back.”
The next mother I met was a woman named Nora. We bonded over both having a daughter named Harlow, who both dressed as Harlow Quinn for Halloween.
“Harlow was diagnosed with Acute Lymphoblastic Leukemia on August 14, 2017, when she was 7 years-old. She is considered very high risk. The hardest part of Harlow’s diagnosis is knowing there is nothing we can do to change it. She has to get chemo put into her spine 24 times in 2.5 years. We watch her go through so much and feel so helpless. When this began, she was struggling every time the doctors put her under for a spinal tap. Her NP asked if we would be open to having Harlow do the spinal taps awake. We talked with other cancer patients who did this and found out that Harlow would be the youngest child to try it, but that’s what she wanted. Harlow has now been doing spinal taps awake for 1.5 years. I cry every time; watching her get to her calm place, taking deep breaths and not even flinching when the needle goes in. She even helped another little boy with leukemia do his spinals awake, paving the path for other kids. Sometimes I wonder how I was so blessed to raise a child this courageous.
Lately, I have found myself shying away from old friends. Not because I don’t want to be around them, but because they just don’t get it. Everyone thinks we will move on from this and go back to normal. But we won’t. No matter what happens, we are forever changed by childhood cancer. Often we find ourselves surrounded by our other ‘cancer’ families by choice. We understand one another and there is happiness in that. I have met some of the greatest families through the children’s hospital. We find strength through each other, spend time with them outside the hospital and celebrate all our kids’ milestones together. They are my late night worry texts; my prayer warriors and our biggest support system. No child should have to grow up so fast or go through what Harlow has, but instead of focusing on the negative, I focus on what a gift Harlow is to us. I am in awe of what she has overcome. This journey broke me as a mom, but I will continue to pick up the pieces and heal, because if Harlow can do this, so can we.”
Then I met a woman named Irma who’s son Rafael is a huge Packers fan, which added a whole other element of excitement at the event.
“Rafael was diagnosed with Acute Lymphoblastic Leukemia (ALL) in November 2011 when he was 2 1/2 years-old. He ended treatment in March 2015 and then was diagnosed with bone cancer in 2016. In 2017, he relapsed with ALL and JUST finished treatment this past February in 2019. He is now 10 years-old. Our journey began when doctors were checking both my daughter and Rafael’s blood levels. They noticed that his were very low, so more tests were ordered. Then we were introduced to a whole new world of doctors and hospitals. One moment that stands out was in 2017, when doctors needed Rafael to do an emergency MRI, so there was no time for sedation. Rafael’s doctor, Dr. Lowaz, talked him through the procedure and told him to be still and not move. Rafael was so brave, he did not move during the MRI and followed all the instructions. My husband and I both wish we could stay with Rafael at the hospital all the time, so he knows how loved he is, but we also have to be home for Rafael’s big sister Ashley, who is now 12 years-old. I stay mainly at the hospital and my husband stays more at home. It’s hard for us all to be apart. Rafael has been fighting his battle with cancer for a long time. Over the years, I have learned how to enjoy the moment and not stress out over small things. My love for my family has deepened and I cherish the time we have together. For us, the Ultimate Campout meant doing something happy together as a family, and being around other families who know exactly what spending life in hospitals is like. Meeting Donald Driver was a huge deal for Rafael because he loves football and is a big Packers fan. Seeing this big football player hug all the children was amazing. Not just because he is famous, but because he has a good heart. It is something Rafael will never forget.”
It was truly humbling to meet these amazing mothers, fathers and kids. Their words are an inspiration, and teach us all about the power of resilience and the precious gift of life.
For anyone wondering how we can help friends in our own lives who might be going through something similar, Ashley had some very wise words of advice.
“Having a son with cancer has taught me how to be helpful to others in these situations. It’s natural to ask, ‘Do you need anything?’ Well, the answer is ALWAYS yes. I needed everything and I was so overwhelmed, I didn’t even know what to ask for. So now I know— don’t ask what they need, ask them to send you a grocery list, ask what time you can drop a meal off, ask when you can pick up the kids up for a little while. If they don’t want it, they’ll let you know.”
Thank you once again to Northwestern Mutual for their ongoing efforts to help families affected by childhood cancer.