Finding Light In Darkness – A Mother’s Perspective on Pediatric Cancer

The first day, when they sat us down in the family meeting room to give us the results my initial thoughts were that his life was going to be ruined, that we would never survive something like this, and… what did we do to cause our baby to get cancer? 

— Beth, mom of Jackson (age 3) – pediatric cancer patient

I have never met Beth Corbeau in person.  Her husband Matt and I went to school together, but I was not aware of who she was (or how incredible she is) until I saw her tagged in a Facebook post announcing their son Jackson’s diagnosis of Acute Lymphoblastic Leukemia.

As a pediatric nurse, mom, and former Make-A-Wish employee, I was immediately drawn to their journey and quickly added their young son (the same age as my little Logan) to the nightly prayer list. Logan has been praying for a little boy he has never met for almost a year now. He needs no prompting to include Jackson every single night.

I followed Beth’s posts full of ups and downs within my newsfeed – some good days, some bad days, some days when being a mom of a child with cancer felt like too much to bear.  But what I was amazed by throughout all of this was Beth’s (and Matt’s) strength, determination, optimism and desire to help others — if you don’t know them, or haven’t yet heard, this power couple created their own nonprofit, Waddles for a Cause, to provide financial support to Maine families facing a pediatric cancer diagnosis… all while caring for their own son.

Recently, I got up the courage to reach out to Beth to see if I could interview her and perhaps create a blog post shedding light on the experience her family has endured so far.  She generously agreed and gave me the most incredible insight into what it is like to navigate the waters of pediatric cancer, as well as where support is still most sorely needed.

I could summarize, quote or paraphrase, but honestly, I have no right.  The answers I received where so profound and enlightening that I could never do them justice.  So here goes….

 

When you found out about Jackson’s diagnosis, what was your initial reaction? 

When we were introduced to a pediatric oncologist in the ER and she told us that they suspected Jackson had Acute Lymphoblastic Leukemia the whole room went dark. I don’t remember much of what was said to us in that first conversation

We had to wait 24 hours for Jackson to have multiple blood transfusions before he was strong enough to be put under for a bone marrow biopsy and another 24 hours to receive the results of the biopsy.

That first day when they sat us down in the family meeting room to give us the results my initial thoughts were that his life was going to be ruined, that we would never survive something like this and what did we do to cause our baby to get Cancer. 

Medically, what has been the biggest challenge you’ve had to navigate?

For me personally it has definitely been just being thrust into this medical world in general. I hate anything medical, I pass out at the sight of blood and needles give me extreme anxiety. When it comes to your child and such a serious diagnosis all of that falls to the wayside, but understanding all of the medical jargon, what numbers, counts and levels mean is something that doesn’t come naturally to me. I’m type A, I want to be in control at all times, I don’t like feeling like I don’t understand something or can’t predict how it is going to affect my child. At first I would vigorously take notes as doctors and nurses barked numbers, counts, and words I had never heard of just to take to Google later to try to educate myself. If there’s one thing I’ve learned, it’s that Google was not designed to give a parent of a child with cancer a medical degree, but rather to give you anxiety and add to your lack of sleep. I’ve learned when I don’t understand something to ask more questions, stop doctors and nurses and explain what I’m not understanding and not to feel bad about asking the same question twice…or ten times. I’ve learned that I don’t need to know every single scenario that ‘could’ possibly happen throughout this journey or the years to follow, but rather to be in control of what we have control of and handle the rest as it comes, something that has been a challenge as a type A person.

What has been the biggest non-medical challenge of this journey so far?

I think the most challenging thing for me has been figuring out how to navigate this crazy journey. For me it’s not fluid. I walked out of the family room after that diagnosis thinking that we’d be connected with other families going through the same type of thing, that we’d be directed to support groups and that we’d be referred to some type of counseling on how to navigate this path, but it’s not like that at all. While occasionally you have the chance to have a conversation with another parent who is going through this or has gone through this, for the most part it’s a really lonely journey and I think that’s been the hardest thing for me to swallow as well as a big inspiration for me to be someone who changes that mold.  

Do you feel there is good support available for families going through something like this?  If not, where is it lacking?

I personally feel like there is almost no support for families in situations like ours and that has been the biggest challenge for me personally. For pediatric cancer patients and families in Maine there are no support groups or outlets geared directly towards navigating the path of having a child with something as devastating as Cancer.

I think Clinic does what they can with their limited resources, but they don’t have a big staff dedicated towards holding families hands through this process. There have been so many times where I’ve felt like I’ve had to fight for referrals for services that I feel like should be included in treatment protocol – like a baseline neuropsych and behavioral evaluation so that we can fully understand the side effects that Jackson has later in life as he grows up, or family counseling to work through the grief that is felt from the loss of the ‘normal’ childhood that we thought our child would have, or counseling for Jackson because we can’t be poking, prodding and medically torturing these children and expecting them not to suffer from anxiety, depression and PTSD. 

It’s the Western way in medicine to only treat the ‘problem’ and not to talk about the mind-body connection, but I deeply feel as though we are doing our kids and our Cancer families a disservice by not making the mind-body connection more of a focus. 

You are working toward starting a non-profit yourself… can you tell me more about what gave you the idea and what you are hoping to accomplish?

When Jackson was first diagnosed and we decided to share the news on Facebook our post prompted Facebook to ask us if we’d like to add a donation button to collect money for a Nonprofit. We decided to add a link to Children’s Oncology Group (COG) because that is the organization that developed Jackson’s protocol and his Oncologist from Maine Children’s Cancer Program actually sits as the Chair of the group. In the first 48 hours of sharing that post we had raised $10K to be donated to COG. In that moment my husband, Matt, and I looked at each other and knew we needed to donate the $10K and start raising money more locally. As local business owners we knew we had a long reach, we just didn’t realize how far and how amazing it actually was. 

We started Waddles For A Cause in August of 2019 with the mission to financially help Maine families facing a childhood cancer diagnosis. We have been unbelievably blessed through this journey – we like to say we have the best of the worst situation – we have incredible healthcare that I get through a part time job, we both have extremely flexible work schedules so we are able to attend every single appointment Jackson has, when we had to pull him out of school and daycare my Mom was able to step in and become his caregiver on days that both of us have to work, other family and friends are always willing to help us with childcare and we were lucky to have a lot of financial stability before Jackson’s diagnosis. We have encountered so many families throughout the last year who have faced a lot of hardship due to lack of insurance coverage, one parent having to leave a job to become a caregiver, lost wages due to the immense amount of appointments required in the first year of treatment, etc.. We will be working directly with the social workers at Maine Children’s Cancer Program to identify families and their needs.

We also hope to be the catalyst for collaboration between other organizations like The Dempsey Center, The Leukemia and Lymphoma Society, The Red Cross, etc. in hopes of being able to develop more support services for families facing childhood cancer diagnoses throughout Maine. 

We held our first event as an organization on October 7th, The First Annual Waddles For A Cause Charity Golf Tournament. We had an incredible turnout and are so excited to announce that the net proceeds from the event were $19,500.

If you are comfortable talking about this, what advice would you have for other married couples going through this (in keeping your marriage strong)?

It’s hard as parents in general to remember the importance of nurturing your marriage. It’s so easy to put our marriages on the back burner as the hustle and bustle of jobs, kids, friends, and family take priority. But remembering that our marriages are the foundation of our families is extremely important, especially in challenging and high stress times. 

Matt and I had been through a rough patch in our marriage a few years before Jackson’s diagnosis right after he was born. The shift in priorities made things challenging for us and luckily before it was too late we made the commitment to go to marriage counseling to learn how to navigate difficult times in our lives a little better. Marriage counseling has helped us immensely throughout the years with learning how best to communicate with each other, what each of our love languages are and the importance of scheduled 1×1 time every single week. 

After Jackson’s diagnosis we started going back to marriage counseling just to help navigate the stress, the grief and everything else that comes with a life changing diagnosis. I can’t recommend marriage counseling enough to couples, especially parents, in a ‘normal’ situation, but I truly think it’s imperative when you are thrown into a stressful situation such as a life threatening diagnosis for anyone in your immediate family. 

What has been the most positive thing to come out of all this?

It has easily been the amazing community of people who have surrounded us to lift us up and support us. Right from the moment we announced Jackson’s diagnosis we had immense amounts of support from expected and unexpected places. It’s interesting because it often has felt like when we are having a hard time and struggling to get through a difficult time in this journey is when something incredible comes out of our support community to lift us right back up and help us keep moving forward. People have been so generous, if there’s one thing Jackson remembers from this journey I hope it’s people’s generosity, support and love. 

What is the most amazing thing about pediatric patients, in your opinion? 

Their resiliency. Jackson goes into clinic or the hospital for a procedure and he is there and present while we are there, but the second we walk out of those doors to head home for the day he’s moved on and ready to take on the rest of his day. He has moments when he doesn’t feel good throughout the day from Chemo side effects, so he takes the time he needs to rest and as soon as he is feeling up to it he moves on with the rest of his day. He never dwells on the things he is forced to go through, something we all need to be reminded of as adults at times.  

Any final thoughts or advice for other moms?

Take care of YOU. Do the personal development, take the time by yourself, listen to the podcasts, read the book, exercise, get away with a girlfriend for a night occasionally, spend time with your husband 1×1, do whatever will refuel YOU because you can’t pour from an empty cup. One of the best things I already had going for me when Jackson was diagnosed was that fitness and personal development were already staples in my life. Working out has always been an outlet in my life and this period has been no different, it doesn’t matter if I do a 20 minute workout in Jackson’s hospital room, hit the Cross-fit gym near my house first thing in the morning for an hour, or push the stroller while I run the road I almost never miss a day. You don’t have to workout for hours, you don’t have to belong to a gym, you don’t even have to follow a program, just moving your body every single day especially during times of high stress is so important. 

The other thing I do every single day is a minimum of 10 minutes of personal development. It could be listening to a podcast on my way to work, reading for 10 minutes before Jackson wakes up in the morning or at nap time, or meditating. Taking that time to reset my thoughts each day is what has helped me to continue to not only stay positive throughout this journey, but also to pass that positive energy on to Jackson. Our kids can feel our energy and feed off of it and I truly believe Jackson has taken all of this in such stride because we have continued to work on ourselves and keep the energy around him positive. It doesn’t mean that we don’t have times that are difficult or challenging, it just means that a majority of the time we are focused on that positive energy. 

So take care of yourself, lean into your community when you need to, and JUST KEEP GOING.

Beth, thank you from the bottom of my heart for opening up to me the way you did.  I KNOW that your words and compassion will be exactly what another mother needs. Mamas, take care of yourselves, your marriages and those babies.  Hug them HARD.  And remember, there is so much we can do to give back and support others if we just find the courage to ask.  

 

XO.

gold ribbon cci

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