Ruby Is a Gem

If you know Ruby, then you definitely know Ruby IS a gem! * Her real name, used with permission.  

 

Today is Ruby’s day! It’s World Down Syndrome Day!  If you aren’t wearing fun and funky socks, go change them right now!

Typical of Neurological Struggles

Nicole and Lehr decided not to have the Harmony test at the halfway point of her pregnancy with Ruby, because they knew the results – either way – wouldn’t have mattered. Every ultrasound and measurement up to that point didn’t reveal any concerns. So, they enjoyed the pregnancy and looked forward to the day they would meet Ruby. When Nicole was induced in June of 2013, the delivery went fine. The nurses and midwife gave no indication they had any concerns. A nurse took Ruby for a bath, which didn’t seem unusual. However, when she returned, the nurse made a comment about Ruby’s floppy nature and her hair falling out. She told Nicole and Lehr those traits were typical of neurological struggles.

She Has Down Syndrome

The nurse then took Ruby to transition, so the doctors could assess her. Lehr followed and sat in a waiting room. An hour later when a nurse brought Nicole to join him, they met with one of the doctors. Very matter-of-factly, he said, “Every indication is she has Down syndrome.We are going to do some more tests.” “I remember feeling the bottom just drop out,” Nicole shared. “I had a crazy rush of hope that maybe they were wrong. I knew if she had Down syndrome there would be potential health issues.” Both Lehr and Nicole cried as they tried to comprehend what Ruby’s diagnosis meant. Another obstetrician stopped by to give them the contact information of a friend of his who had a child with Down syndrome. Talking with him and his friend that first night helped them process the news.

Lots of Love and Support

Hours of research gave Nicole hope as she learned about the productive and happy lives of children with Down syndrome. “I really didn’t know their potential,” she said. About a month after Ruby arrived, they began sharing the news that Ruby had Down syndrome. “Lots of love and support came in every direction, but sometimes I had to comfort people as they processed the news about Ruby’s diagnosis,” Nicole remembers. She set up an appointment with Babies Can’t Wait, who suggested physical therapy when Ruby turned six weeks old.

An Integral Part of Their Family

Nicole and Lehr decided not to tell their son Eli (8 years old) and daughter Maddie (6 years old) about Ruby’s diagnosis until Ruby’s first World Syndrome Day in March of 2014. By then, Ruby was 9 months old and an integral part of their family. They felt their kids needed to know the term Down syndrome and a limited amount of information about what it meant. When Nicole asked them if they noticed anything different about Ruby, they both said, “No.” Eli and Maddie fiercely loved Ruby since she was born, and this information didn’t change their feelings.

Ruby Is a Gem

Ruby’s dad, Lehr, gets credit for coming up with the tagline “Ruby is a Gem.” Gems are precious and beautiful, and Ruby is definitely precious and beautiful! T-shirts were designed to spread the word about Ruby and her incredible attitude about life. (Check out #teamruby on Instagram and Facebook.) In October of 2014, when she was 15 months old, Ruby, her family, and one hundred friends participated in the Buddy Walk in Atlanta. The picture to the left is a sea of red as everyone who participated wore their Ruby is a Gem t-shirts! Ruby took her first steps at 18 months, which is early for a child with Down syndrome. “She is a worker. She likes tasks and challenges. She wants to be in the mix of things and is very outgoing with her activity level. So it didn’t surprise us she walked early,” Nicole shared.

Lights Up a Room

Ruby lights up a room wherever she goes. Our family has the weekly pleasure of seeing Ruby as our families go to church together. To say our church loves Ruby is a gross understatement. Nicole and Lehr’s close friends at church have definitely become an important part of their support network. Ruby loves playing with the other children with Down syndrome at GiGi’s Play House in Atlanta every Saturday. It not only provides therapeutic play for Ruby, but Lehr and Nicole enjoy interacting and learning from other families who have children with Down syndrome.

Platelets are Low

At Ruby’s two year check-up in June of 2015, the pediatrician wanted to run a full CBC panel. By mid July, Nicole received a phone call from the pediatrician’s office, asking her to bring Ruby in for more blood work because the first sample wasn’t enough. “No alarms went off,” Nicole remembers. The nurse took Ruby’s blood at the pediatrician’s office and said the doctor would call with the results. When Nicole finally spoke to Ruby’s pediatrician, he said, “I didn’t need more blood work. I wanted you to go to a hematologist. Ruby’s platelets are low.”

God Prepared Them

“Hearing this information immediately made me think Ruby had leukemia. I instinctively knew. I searched Google and unofficially confirmed it,” Nicole remembers. “It wasn’t a hard diagnosis to accept, because God prepared us with Ruby’s Down syndrome diagnosis. Going through that and seeing how normal she was weathered us for this next step,” Nicole shared. “All I can say is I felt calm.” On the other hand, Lehr didn’t agree with Nicole’s suspected diagnosis.”No. No. It’s not leukemia. She’s fine.”

Happy Through It All

Ruby’s pediatrician sent them to the AFLAC cancer center at Children’s Healthcare of Atlanta for more blood work to confirm the suspected diagnosis. By August, Ruby had been diagnosed with acute megakaryoblastic leukemia (AML – M7). Six rounds of chemotherapy would be her treatment, with the first round exclusively in-patient.

The first round of her treatment consisted of giving her platelets, then surgery to place her central line, and then a spinal tap to check for cancer in her spinal fluid. The chemo was added during the spinal tap. “During that first month of treatment, Ruby didn’t experience any decreased energy, bruising, or paleness. We didn’t notice any change in her personality. She was happy through it all,” Nicole remembers. “It filled us with hope.”

An I’m Back! Attitude

A small scare occurred when Ruby spiked a fever during her first treatment. She had an allergic reaction to the antibiotics, which caused labored breathing. Once she was back to no fever, Ruby’s suitcase was packed and they headed home. By the second round of chemo, Ruby knew all the nurses, doctors, technicians, and even the cleaning people. Some fatigue slowed her down, but she spent most of her time exploring the hospital, going to the music events or story time, kicking the soccer ball, or watching the clowns. “She never seemed fearful about going back for her next round of treatments.  An I’m back! attitude was how she handled being back at the hospital,” Nicole remembers.

Ceremonial Ringing of the Bell

By the end of the fifth round of chemo, Ruby was rockin’ a mullet and her hair was getting thinner and thinner, so Nicole shaved her head when they returned home. (Doesn’t seem as if Ruby cared one bit if she had hair or not.)

The sixth and final round of chemo in February of 2016 ended with the ceremonial ringing of the bell. As much as it was a big day for Ruby, Nicole and Lehr were incredibly thankful to know Ruby was finished with chemo and had beaten leukemia! “Ruby was so young she didn’t understand the severity of her diagnosis or what chemo meant. Having her hair fall out didn’t affect her. She continued to be herself throughout all of it,” Nicole shared.

No Small Feat

In March of 2016, Ruby’s dad, her brother Eli, and several boys from church shaved their heads in honor of Ruby at the St. Baldrick’s Foundation event. This organization exists to raise money to fund childhood cancer research. Ruby missed the 2015 Buddy Walk, because she was in the hospital receiving chemo treatments. But she was all smiles while wearing her Ruby is a Gem t-shirt for the 2016 Buddy Walk. Overcoming leukemia is no small feat, so friends and family were happy to join in Ruby’s celebration. Going to Disney World for a week through the Make-A-Wish Foundation was an incredible way to mark Ruby’s one year cancer free anniversary. A new t-shirt was definitely in order – check out her cool Make-A-Wish t-shirt! Big hugs from Anna and Elsa were a dream come true for this little princess.

An Incredible Overcomer

Ruby is an incredible overcomer, but I’d be remiss if I didn’t point out how Nicole and Lehr’s strength and positive attitudes propel Ruby forward. God is at the center of Ruby’s family. Nicole relied on Galatians 6:9 throughout Ruby’s diagnosis and treatments. It says, “Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” “The blessing of Ruby’s cancer was the deepening of my relationship with God. We’ve gone through these things, so we can help others,” Nicole shares. “And I get to encourage and support moms with DS children and/or children diagnosed with cancer.”

Nicole has diligently written an online journal for years about being a mom. She calls it Outnumbered and Overjoyed. If you want to take a peek into the ups and downs of a mom’s life with three amazing kids, check it out here. Bonus: lots of Ruby pics and stories!

Leave a Reply (below): How do you wrap up an overcomer story like this? By checking out Ruby singing Rachel Platten’s “Fight Song.” Leave words of encouragement for Ruby, and her mom and dad will share them with her.