There are a few moms walking this path that have to first accept a Down Syndrome diagnosis and just as the right their spinning world, they are dealt another trial. Down syndrome and Leukemia. Karla knows this all too well as her beautiful son, Lucas, had heart surgery and then was also diagnosed with Leukemia. Lucas is amazing and such a trooper as he fights his way through all the obstacles.
Before Lucas was born I didn’t know the Down Syndrome community existed, I didn’t know I would one day become a special needs parent. When I was 30 weeks pregnant, while Folding laundry the thought of me having a baby with Down Syndrome came to mind and I said to myself God only chooses special people for special needs kids, he wouldn’t choose me, he knows I’m not strong enough to deal with having a child with Down Syndrome . Fast forward to Saturday 2/07/15 . I was exactly 36 weeks and began having contractions early in the morning, by 11 am my contractions were getting stronger and more frequent so hubby and I rushed to the hospital. When we arrived my water broke and I was rushed into a room . 1 hr later I was being wheeled Into the OR for an emergency C-section. I was so scared and I prayed everything was okay with the baby.
Lucas was born at 3:08 pm, he was tiny and so cute !! They did all the routine tests and moved us into a recovery room, the nurses kept coming in to take Lucas for bloodwork every hour. The next day at around 3 pm the pediatrician came in to check Lucas, she was a bit distant but I figured this was her bedside manner, she left the room and 5 minutes later a nurse told me we were being moved to the NICU and that the NICU doctor had to talk to me. My heart sank.
When I got to the NICU , Lucas was in an incubator surrounded by nurses & doctors. I was so scared, I thought is my premonition coming true? Does my baby have DS ?
It was confirmed when the doctor coldly told me the words ” your baby demonstrates characteristics of Down syndrome and we need to run more tests ” my mind went blank , I felt the room closing in on me, I wanted to run out of there , I wanted to wake up ! But this was real , it was really happening .
I went to my room and starting searching DS on Instagram and on the internet. I discovered a community of people that had been were I was now . I was truly heartbroken. I imagined that my child would be made fun of , that he would never reach the goals I had set for him , that people would treat him differently. All of this along with an incredible amount of guilt, I felt horrible that my other kids would have to grow up with a sibling with special needs .
When I got home , I cried uncontrollably and called my mom , I could feel her anguish for me . She told me not to worry , we all love this baby and we will all help him with whatever he’s going to need . That made me feel a little better , but I still wasn’t at peace .
I saw parents on IG that were at peace with the diagnosis, they were happy, but I wasn’t!
I thought to myself ” what’s wrong with me ?”
Why can’t I look passed it ? I would message other parents for advice, it would help for a bit and then I was back in that dark hole of pity.
It took me quite some time to accept it , I hate that I wasted all that time when I could’ve been enjoying my sweet little baby boy.
At 1-year-old Lucas had a VSD repair, I thought this was gonna be one of our toughest health challenges with him, but I was wrong.
Our toughest challenge came in October 2016 when Lucas began having small pinprick red dots all over his body, I thought it was measles so we drove to the ER , the doctors ran tests and came into the room to tell me they suspected Lucas had Leukemia. He was later diagnosed with AML (Acute Myeloid Leukemia ) his treatment plan included 6 treatments of aggressive chemotherapy. We began therapy in November, I cried so much when they took him to the OR to place his Chemo Port. I felt horrible that I had wasted one year worrying about DS , and now my baby was facing a life threatening disease. 
Our doctors told us that Lucas had a greater chance of survival and a greater chance of responding well to the treatment due to his DS . For some unknown reason, kids with DS have a greater chance of developing Leukemia but they also have a greater chance of responding well. On April 18 , 2017 Lucas has his last Chemo and is on his way to a full recovery. He has zero evidence of Leukemia cells!
Lucas is now 2 years old and he’s an amazing little guy , our family loves him so much ! He does the sweetest things and he’s so funny. I’m amazed with his strength and love for life .
I still have days when I worry but mostly my days are filled with love for my little Lucas .
Lucas’s mommy, Karla, and Daddy, Jack, live life with their 4 children (Lucas is the baby). Lucas has a strong team helping him succeed in his beautiful life. Follow along with the family on Instagram @luke_the_little_trooper.
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