Yesterday I had an urgent feeling to call a new friend.
I met Julianne through my friend Robin about 3 weeks ago. Julianne was struggling with a rare cancer and Robin thought I could help in some way. When we met, there was an immediate bond that only comes through a deep understanding of a shared trial. Julianne had 6 children ages 15 to 2 and had homeschooled them all before her health would no longer allow it.
Her cancer is called Adenoid Cystic Carcinoma and only affects 1200 people per year (myeloma is also rare but affects 20,000 people per year). It started in her salivary gland and had grown up into her ear and check, across the nerves in her forehead and to the other side of her face. She had undergone an operation to remove the cancer, but it grows along nerves, so they removed her facial nerve and and re-grafted a new one in a later surgery. Fragments of the cancer had remained and now her cancer had returned. She had participated in two clinical trials which put the cancer at bay but not for long. She had lost the ability to chew, hear and talk but radiation treatment had brought it back for a few weeks.
She showed me her feeding tube and she sipped on a smoothie as we talked about her journey in her clinical trials and treatment. That week a fire had broken out in her home and they were living in a hotel with her in-laws. She was at Robin’s to spend the day with a doting friend and rest while allowing the kids to play outside of a hotel room. We talked about how she and Robin had taken videos so her kids could remember her and how they had gone shopping for items she could leave for her children on their most important days to come – their baptisms, their mission farewells, their weddings. She wanted them to know how much she loved them, how devoted to them she was as a mother.
When I got home, I started calling around. If there is one thing we know how to do, it is to be pushy when it comes to healthcare. I didn’t know details about the treatments she had already received, but found a clinical trial at the University of Virginia. I spoke with the trial administrator and she told me what she needed to enroll Julianne. I called the founder of the ACC foundation and got a list of ACC specialists Juianne may want to consider. I gave Julianne the information and talked to her about getting more information so we could continue.
She has been on my mind but I didn’t want to push her. There is only so much advice you can take sometimes and you have to follow your own path.
Yesterday, the thought kept pressing on me that I needed to give her a call. The thought came stronger and more frequent. I was in the middle of helping a friend make a pillow and matching comforter for her grandson’s bed. “Call Julianne. The pillow can wait.” I excused myself and said I needed to call a friend. Her husband picked up and I asked for Julianne. “She’s here but she can’t talk,” he said. He shared with me that last night she went to sleep and today she was not able to wake up.
I awkwardly invited myself to come and see her and without knowing me, he was gracious enough to agree to have me come over. Oh, how my heart aches for her and her family. I stopped at Costco and bought some breakfast items (people always bring you dinner but for a big family no one usually thinks about breakfast) and some books for the kids.
Scott is a doting husband who has cared well for his wife during her struggle. He was calm and composed and strong. His parents were there to help with the kids in a temporary rented home with a few sparse furnishings. Julianne was sleeping on a bed with a simple blanket.
Sitting with her, I felt calm and immense sense of peace. You could feel the love that Scott had for his wife as he touched her leg and told me about their experiences of her treatments, her progress, his knowledge of what would happen, the fire and the children. Scott was strong and stable but had his moments of struggle. “I understand how people can be taken after they’ve lived a full life and are dying in their eighties. But a young mom whose kids need her? I don’t think I understand that.”
After my own experience and our experience with Paul’s brother and the years that followed his death from leukemia, I have a powerful understanding of the influence and continuing watchful care that a parent eternally has, regardless of their presence here in mortality or in the next life. I know they are there. They watch, they care, they counsel, they help. They are present at important life events and cheer on their posterity. Their presence may not be constantly felt, but they never stop loving or caring or watching over their loved ones.
When we were in Mexico, I sent an email to Reed’s delightful second grade British teacher. “I’m sorry that I can’t make it to parent teacher conference. I am in Houston getting treatment. I’m looking forward to being his mom again when this is all over.”
She replied, “You are still his mum.”
I had to be reminded that even though I wasn’t present, I was still his mom. And I already knew. During my transplant I had been given ideas and impressions about what my kids were doing and what they needed. My impressions were spot on.
My friend describes cancer as a tug-of-war between this world and the next. For all the heartache and the pain there is balancing joy. His plan is still a good one. He knows this is not the end – just a proving ground, a school, a place to learn and prepare. And with an outpouring of love He has an endurable law of compensation. The lessons are sometimes painfully deep, but with the depth also comes permanence to the learning. Sometimes we are meant to hold on and sometimes we are meant to let go. The ultimate ending is glorious and can include a forever family, knit together with an unbreakable bond.
And so I say, Julianne, you are still their mum, forever and always. You can be with them throughout their lives even to places you may have found unreachable in mortality. My heart and prayers are with you as you and your family continue in this journey now and forever.