Paige's story: Remembered through joy, hope and faith

Allen Kramer, Texas Children's Hospital

My name is Amy. I’m a wife, mother and bereaved parent. One of my two kiddos no longer calls this earth home. I lost a piece of my heart in October 2016 when my beautiful daughter, Paige, went to be with Jesus at the age of 16. She should’ve been enjoying high school, hanging out with her friends and getting ready to conquer the world, but she wasn’t. Life had other plans for my girl.

Paige spent nearly three years fighting cancer – three separate times. Texas Children’s Cancer and Hematology Centers became our “home away from home” over the course of those years. This is where Paige would receive care from some of the most dedicated professionals I’ve ever encountered. This is where we came to know and love so many people we now consider part of our family.

Before I go any further, I must talk a bit about this young lady who challenged the brains and wits of everyone on her medical team, the real-life superhero whose strength and courage still blow my mind  – my beautiful Paige Madison Lejeune.

I used to say Paige was my healthy child, unlike her accident-prone younger brother who was always fighting off some kind of yuck. Paige was the healthy one, until one day she wasn’t. When Paige was in eighth grade, worsening respiratory issues sent her to the emergency room (ER) at Texas Children’s over the holidays. This is when a 16-centimeter mass was revealed to be the cause of her breathing struggles. Paige was subsequently diagnosed with T-cell acute lymphoblastic leukemia (ALL) in January 2014 and began a projected two-and-a-half year treatment plan through Cancer Center's Leukemia Program. She endured nine long months of front-line treatment, including intense chemotherapy, lumbar punctures, transfusions and much more. When she entered the maintenance phase of treatment in January 2015, Paige was thrilled to rejoin her classmates to finish out their freshman year of high school.

Paige thoroughly enjoyed the following summer, and she reported feeling more “normal” than she had in a very long time. Sadly, the cancer beast reared its ugly head once again on Labor Day 2015 when a trip to the ER (at Paige’s urging) revealed the return of leukemia. Paige had officially relapsed – a new mass formed and leukemia blasts began invading her body. T-cell ALL is an aggressive form of leukemia, coming back with a vengeance upon relapse. Paige’s best shot at this point was a bone marrow transplant. Three rounds of brutal chemotherapy beat her body up like never before, but she reached remission and was able to receive her transplant in December 2015.

The transplant gave Paige a brand new immune system, but the recovery process wasn’t easy. She encountered a few expected bumps along the road; however, her bones paid a price. The damage in her legs was so severe that she relied on support braces to walk without grimacing in pain. Nevertheless, we were hopeful – hopeful the transplant would keep the cancer away for good and the side effects would fade with time. Paige’s recovery progressed so well she was actually on track to start her junior year with her peers, or so we thought.

In July 2016, just over 200 days post-transplant, the cancer returned yet again, taking everyone (including Paige’s medical team) by complete surprise. It also left us with very few options, all of which would only slightly slow progression. By September, Paige was receiving concurrent care through hospice and her team at Texas Children’s. The hope was to make the most of the time we had left together. When the cancer progressed at a faster pace, we found ourselves back on the ninth floor with our Texas Children’s family. This is where we would spend the last few weeks of Paige’s life. This is where I heard my daughter say, “I love you, Mom” for the very last time. Paige took her final breaths on Oct. 24, 2016, and a beautiful peace fell over her as she stepped into heaven.

Paige personified joy, hope and faith – from the very beginning. I believe this is what led us to select Romans 12:12 as her verse for the entire journey. Be joyful in hope, patient in affliction, faithful in prayer. Paige lived this verse out so beautifully, conquering every roadblock she faced with grace, the hope of good things to come (including becoming a nurse on her beloved ninth floor) and the faith that God would never leave her side. This unwavering faith and ability to see the joy in each day served as an inspiration to everyone around her, including the incredible people who cared for her along the way.

Like I mentioned before, Texas Children’s truly became our home and the staff became our family. Each person connected to the Cancer Center – from the desk staff and patient care assistants, to the doctors and nurses – cares for not only the child battling a diagnosis, but for the entire family. Their desire to make things as good as possible, for as long as possible, never changed, even once Paige’s illness progressed to the point of no return. These people loved her dearly, and she loved them. She trusted them. She made a lasting impact on them, one I could never fully put into words. I will simply say that I see it in their actions and in the way they live their lives. My sweet girl is in their hearts, forever.

Later this week, my husband and I will attend the Cancer Center’s annual Remembrance Breakfast. It’s a time for sharing memories – heartbreakingly beautiful memories – of patients who passed away over the past three years. Not all families attend, but every child is recognized. I remember counting at least 200 names in the program one year – 200 children who didn’t get the chance to grow up, 200 children whose stories are just as important as those who survived. This is also where doctors, nurses, social workers, child life specialists and many other staff members join families to honor the legacies left by some of the bravest children to ever set foot on our planet.

There’s usually a slideshow of smiling, joyful children, and the families and caretakers of these children line up to share sweet memories, wishes and sentiments. There is laughter. There are tears. Most importantly, there is love. Every parent and caretaker walking out of that room knows their child was – and still is – so very loved.

This year marks our third Remembrance Breakfast, and I have no preconceived notion about walking out of there with dry eyes. It’s emotional, yet so beautiful. It reminds us we’re not alone on this journey of grief. It reminds us our precious children are not forgotten.

Working through grief looks different for everyone. I don’t believe I hold the key to figuring it all out. I do know my family is strongly rooted in faith, which is a big part of how we navigate this new road. We have joy in the memories of our time with Paige, but we can also experience joy as we move forward. We hope the sting of her absence, though always with us, will lessen with time.

We’ve learned to be patient with ourselves, and with each other. Grief is an ongoing process, not to be finished at a designated point. It’s difficult. It’s exhausting. But still, we press on – one day at a time, sometimes one moment at a time. We take care of each other and we look for ways to give back – to make a difference, to carry on Paige’s mission of helping others on this road. This is a road no family should ever have to travel, yet far too many do.

I often wonder what my girl thinks about our handling of this curveball life threw at our family. I can only hope we’re doing it in a way that would make her proud.

To read more entries from my blog, click here. You can visit Team Paige on Facebook, too!

Related:

[read:] Team Paige (TMC News)

[watch:] Paige Project 18: Tribute to Paige (YouTube)