CPN | The Giver, The Peacekeeper & The Conduit

The Giver, The Peacekeeper & The Conduit

 

“My name is Kerry Millette and I am married to Craig Millette. We have three children. Ty who is currently 11, Ava who is 8, and Kayla, her twin sister who passed away at the age of 5.”

 

This is the type of carefully crafted family introduction that becomes the cornerstone to a bereaved mom’s story. At times we just put it right out there, but many of us also learn the delicate weave of vague or rushed details (I had a son with cancer.) that spare us the onslaught of questions from acquaintances and strangers alike. All mothers face this type of seemingly innocent curiosity from the public. ‘Wow, twins!  You must have your hands full!”

 

Kerry’s first pregnancy was typically uneventful resulting in healthy baby boy Ty.   Subsequent pregnancies proved to be more difficult, and after several losses, Kerry was diagnosed with a protein deficiency which was causing her to miscarry.

Her pregnancy with the twins was considered high risk, but with careful monitoring and medication she carried them to term.

 

At 38 weeks she delivered two beautiful healthy babies with little complication.

 

“We waited to find out what we were having. I thought a boy and a girl would be nice or two boys. We already had Ty and I could picture myself as a mom of all boys. And then they came, one girl then another! I was not at all prepared for TWO girls!”

 

Of course, after the shock wore off, Kerry fell in love with the idea of twin girls. Having twins was always in the back of Kerry’s mind—she is the younger sister to twin boys, Kevin and Kirk; but sisters—that is a bond that as the only girl in her family, she had only imagined.

“I knew the girls would fight, all kids do, but I also looked forward to seeing them bond and grow together as twin sisters. It’s such a unique and special bond.”

 

I think most moms, at one point or another in childhood, fantasize about having twin girls. A sight to be seen with the matching dresses and big pink and purple bows. A built in best friend. What more could a little girl ask for?

 

Wrapped up in pink and purple and blue, the girls came home – the perfect package(s). And as most mothers of twins will tell you, it didn’t take long for their individuality to shine through. As twins “Ava and Kayla had a very special bond but they were also very different.  Kayla was fine doing her own thing where Ava needs much more attention.” Kerry recalls. She laughs remembering a time when they were just learning to walk. “You could see that Kayla had had enough of her sister. She would walk away to find a quiet place to play but Ava would follow. Eventually the hand would come out and with one small push Ava would be on the floor in tears.   We laughed because no matter how many times Kayla would warn her sister, Ava just couldn’t let her walk away.”

 

This is who they are. Kayla the peacekeeper, the classic middle child—albeit only by a few minutes—and little sister Ava, always putting on a show.

 

Each one’s individuality would later become the other’s saving grace.

 

People automatically assume the closeness of the twin relationship, but Kayla and her big brother Ty also had their own unique special bond.   “Kayla was a listener, so where Ava and Ty butt heads, Kayla would just sit and listen and would ooh and ahh over her brother.  She would watch him and just want be with him.”

 

Of course, the Milletts also have plenty of those adorable photos of the girls hand in hand playing in the yard or with their matching but slightly different backpacks for their first day of preschool, together.

 

On the last day of preschool, Kayla fell ill. She came home tired and feverish and just not herself.   The next day she was diagnosed with a double ear infection and given high dose antibiotics, but days later she only looked worse. The fever grew, she became lethargic and could no longer sit up. She landed in the emergency department and swiftly fell into respiratory distress. After days of searching for answers, in one panicked, dire moment, the Milletts were slapped in the face with an emergent diagnosis. Kayla was experiencing multi organ failure due to hemophagcytic lymphohistiocytosis (HLH). HLH was causing her immune system to overreact and was attacking every tissue and organ in her own body.

 

Her situation was grave at this point and the only treatment option was to start chemotherapy right away. The pharmacists had been called back to the hospital to make the medicine that she would need. “There was no time for questions. You must sign here.!” The doctors shouted.  “This is her only chance of survival.”

 

This is so often the case with a rare diagnosis. Fast decisions with little time to process, research, get a second opinion…or even tell the other children.

 

Kayla’s body responded to the chemotherapy but she spent much of the coming months in the hospital. It was determined that Kayla had familial HLH. Her twin sister was not a carrier but was a perfect match for bone marrow donation, which Kayla would need twice in the next two years. Both times her sister, without hesitation, donated her marrow. Both times her big brother sat calmly and quietly beside her, bonding over quiet secrets, just as they always had. Both siblings, selflessly, providing an irreplaceable piece of Kayla’s healing.

 

“I remember explaining to Ava that she was giving Kayla a gift that only she could give, but also that this [her marrow] was only one piece of what Kayla needed to get better. I explained that the doctors would also have to give her medicine and time everything just right. [I knew there was a chance this wouldn’t work and] I never wanted to put too much weight on Ava’s shoulder.”

 

These are dangerously weighted conversations to navigate. Ava held the one piece that could truly save her sister’s life but Kerry and Craig understood that to put it that way could potentially set Ava up for a lifetime of guilt should things go wrong. They chose their words carefully and always gave Ava the choice to help her sister.

 

When Kayla needed the second transplant, Kerry did not just assume that Ava would say Yes again. “I wanted to make sure she knew she could say No, but of course I prayed that she wouldn’t. I don’t know what I would have done if she had said No.”

This time the sacrifice was greater, and the consequences more apparent. The girls were a little bit older. Ava would be put on precautions and have to stop her beloved dance classes for many weeks. She also now knew what the process was like and could remember how sick she felt last time.

 

Kayla&AvaKerry called home from the hospital to ask and without hesitation Ava said Yes.

“I heard the phone hit the ground as she ran to her room to pack.”

 

This is who Ava is. She was excited to share in the hospital experience, the attention, the toys. She was proud to help her sister in a way only she could. She is adaptable and outgoing and giving. She is a sister.

 

Since Ava played such an important roll in Kayla’s treatment, it became important to the Milletts that Ty also be given a hands-on way to participate. For the second transplant, it was decided that they would harvest the marrow from Ava, process it, and then Ty would have the honor of starting the infusion— pressing Go, starting the monumental step on the road to recovery. It was a long day between harvest and transplant, and as Ava recovered in the room next-door, Ty sat patiently, proudly, snuggled up with Kayla late into the night waiting to do his part. With his baby sisters separated by a glass wall and two curtains, Ty became the physical connection, a conduit, linking the two girls as he started the process of infusing one with the other once again.

 

After a long and tumultuous recovery, it was found that Kayla’s second transplant was a success, but over time the chemotherapy had taken a toll. Her fighting spirit rallied many times, but in the end the toxicity of the chemotherapy became too much. Kayla died of multiple organ failure at the age of 5, 11 months and two weeks after she was diagnosed.

 

 

The loss of Kayla’s life— Ava’s twin sister, Ty’s best friend—has left a complicated hole in the Millette family. Two years later, Ava continues to share a room with Kayla’s empty bed, which can be both comforting and lonely. The middle seat is always empty now; and for Kerry, celebrating the achievements, the milestones, and even the everyday life of Ava is forever clouded by the ever-present missing piece, Kayla.

“It’s hard on the big days. Each year Ava has a birthday that I am so thankful to celebrate but it is also Kayla’s birthday and sometimes I would just rather stay in bed and look at pictures and cry for her.” Kerry shares that it is not just the big days. It’s everyday. Everyday Ava is living and growing and changing and Kayla will always be five. “Sometimes I panic trying to find her, scanning the stage at the dance recital or Christmas show finding Ava, but endlessly unable to locate Kayla. The little everyday, drop off at school, tucking into bed at the end of the night—there is now always only one where there should be two. Ty and Ava butt heads now more than ever and Kerry and Craig often wonder if Ty is secretly, in some way, disappointed that it was Kayla and not Ava.

 

tyavaKaylaKerry is able to empathize with the potential of her son’s complicated thoughts because she too knows this loss, sibling loss.

 

Kerry grew up as the little sister to her 6 year senior brother Kevin. Kevin was born a twin to Kirk. Kirk became ill as a toddler, close to the age Kayla was diagnosed, and passed away at 3 1/3 years old from neurologic decline due to uncontrolled idiopathic hydrocephalus. Kerry never met her brother Kirk, but as a child she found ways to connect and create memories of the brother she never knew.

She would study the pictures that lined the halls of their childhood home. “My mother would cry when we asked about Kirk so I didn’t ask much, but he was always a part of our life.” She remembers sneaking into her mother’s dresser drawer where a lock of Kirk’s hair was kept. “I would pick it up, look at it, smell it. It was the one physical piece of him I had.”

 

I asked Kerry what it is like now, to share this identity with her mother both bereaved, both living with the loss of a child, a twin, in early childhood. She is also paradoxically a peer to her own children from the standpoint of sibling loss. It is complicated. Kerry’s mother, Kayla’s grandmother, has expressed great thanks that Kerry and her family have the support that they do. “Things are so different now” Kerry shares. “There were no support groups back then. My mother lost a child and no one would talk about him. I can’t imagine that. It is still hard for me when people tip-toe around Kayla’s life, but I have a great support system who knows me, not just as Ty and Ava’s mom but also Kayla’s mom. Because of our support groups Ty and Ava have friends who have also lost a sibling and they can talk about it openly. It helps.”

 

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