My daughter, Carson, was 10 in the spring of 2016 and had been having abdominal issues. She woke up screaming in pain one night. We found her in the bathroom curled up in the fetal position. I raced through town to the ER. Mario Andretti has nothing on a mama with her sick baby. The first thing they checked was her appendix and said it was fine. They told me she was probably constipated.
No, let’s scratch that off the list. I took her to our regular physician who reviewed her ultrasound results and said it was a missed ovarian cyst. We needed to get to a larger hospital. We were recommended to one in Lubbock, Texas, and told to go to their ER. We made the trek.
Days of images and labs and again, nothing. The cyst was gone. Weird. I question and plea to no avail. We go home. Day 4 she is screaming again and I get her to another doctor recommended to me. He says we must get that appendix out. It was the appendix after all. It was showing signs of atypical appendicitis, and she was diagnosed with ‘chronic appendicitis.’ I will never forget the doctor and surgeon telling me that her medical problems weren’t over. Her appendix looked like that of a 65-year-old person. They predicted what was to come.
She held her own for about 5 months then the pain came back with a vengeance. Back to the doctor, where we discover she has Peptic Ulcer disease. My sweet daughter starts on meds, suffers from more pain, so we increase the meds. That’s not it. She begins to run daily fevers and I get her to the ER, where her labs look ok.
Maybe, she needs emotional support. Perhaps this is anxiety. No. No. No. Mother’s know.
One final trip to the ER a few days later, on October 3, 2016, and they run a rare blood test for a child. They check her lipase to check pancreatic function. Her levels were 2500 and they should be 80-160. Pancreatitis is very rare in children. Treatment is typically a complete GI rest and pain management. Her levels continued to rise and her health declined.
We were transferred to another hospital, again in Lubbock, Texas. They immediately got busy with PICC lines and central lines and total parenteral nutrition (TPN), where fluids are given into a vein to provide most of the nutrients the body needs. It was so surreal.
For a month, we sat there day after day watching our beautiful, vibrant, sassy girl waste away. Day after day, I feared the labs knowing her numbers were climbing to the highest limits these doctors had seen. Nothing they were doing was working. She had had no food in her mouth in a month at this point. She relied on TPN through her central line. Test after test, despite having endured so much blood drawn, they could not find the root cause of her pancreatitis.
In the harrowing halls of the hospital, I could hear babies cry, children whimper. Parents biting their nails, hurriedly talking on cell phones. The shower was for sobbing. Sometimes I rode the elevator an extra floor because I simply could not face what was to come. I always faced it. Carson always took it. She has seen the devil and spit in his face.
Their answer was a discharge and a referral to a specialist in Houston. A referral? You want me to take her home like this? She can’t eat. She has 4 tubes in her. ‘Ma’am, we will set you up with home health until Houston can get to you.’
I hit the floor in prayer. I cried out in prayer. I prayed and I prayed. Then I heard a whisper: ‘just ask.’
I wrote out a Facebook post pleading that if anyone knows anyone who has dealt with pediatric pancreatitis, to PLEASE let me know. He answered me immediately. A vibration of the phone told me I had a message on messenger. One of my oldest friends went to college with a woman whose daughter has battled pediatric pancreatitis. Could she connect me? Sweet Jesus, yes, YES! We were in contact all night long. I was working with the nurses on our end to get her records in order to be sent to University Health Systems in San Antonio, Texas. Our angel, Christyn, worked all night on her end getting Carson accepted as a patient of Dr. Sundeep Patel.
She was transferred by 2 p.m. the next day. Her life was saved. She ended up being in the hospital a total of 3 months.
Since, Carson has been diagnosed as chronic pancreatitis, adrenal insufficiency, and Cystic Fibrosis. Most CF’ers are diagnosed at infancy. Since Carson’s largely affected only her GI system, it wasn’t caught. But, University Heath Systems in San Antonio caught it. And since that spring of 2016, Carson has had 18 procedures overall, 12 on her pancreas. She has spent approximately a fourth of the time in the hospital. It’s our second home now. The staff is family.
The hard part is being separated from family. We’ve missed birthdays, anniversaries, football games, basketball games, track meets. We’ve missed daily ‘good mornings’ and kisses and hugs before work and school. But, our family pulls together to be where we cannot. We get to see a whole different side of humanity in the chaotic life of chronic illness. We see the good in people, we see people wanting to help. We hear those four words, ‘how can we help?’ and we know our God has us. He has carried us.
He’s still carrying us.
Our son, Wade, is now 17 and a prolific athlete. He’s a marvel to me. We jokingly call him ‘Golden Boy’ and it’s stuck. It’s now his moniker and it even made it in the news. You see, he has a story just as special as Carson’s.
During the second Area track meet Wade ran in as a sophomore, Carson was in the hospital. Wade sent me a picture of his cleats. He had taken a sharpie and written CH/CF on them. Carson Halterman over Cystic Fibrosis. He ran in Area, won Area, moved on to Regionals and barely missed state. That became his thing. He wrote in every shoe he performs in. He told me that his little sister has limitations and he has none, when he’s tired and wants to quit he thinks of her. He performs for the both of them.
See? Golden Boy fits him pretty well.
We are flying high on life and then we get hit with another major challenge.
Wade has been with his girlfriend, Kylie, for over 2 years. She is the beautiful cheerleader, All District Volleyball Player, basketball player, and plays tennis. They are a stunning couple. They are true #relationshipgoals.
On May 10, 2018, Wade was getting ready to run the 110 hurdles at state and Kylie’s mother got an urgent phone call. The labs taken a couple of days before at a doctor’s appointment revealed something unimaginable. They needed Kylie admitted ASAP in Dallas. Penny told me they suspected cancer.
Just then, the gunshot went off for the beginning of the race. I had no idea if my tears were for my Golden Boy making the state meet, Penny, Kylie, or Wade after he found out. My tears were for it all. I mean, really? After everything we’ve been through I thought I cornered the market on illness and heartache for everyone in our peripheral. And, I was ok with that. Carson has often said she prefers to be ‘sick’ than another child. I know what she means. I don’t want one more child sick. I don’t want one more parent facing the devil like we do.
I know that’s not how the life works. But, still. What? How? HOW?
All Kylie knew that day was something was off with her labs and she was needed inpatient for more labs. This is what Wade knew. I saw the fear in his eyes. He knew. His heart knew. His girl wasn’t ok.
The next morning on Mother’s Day 2018, Penny called and said it’s been confirmed Leukemia. She has acute lymphoblastic leukemia. ‘Could I please tell Wade?’ We were at brunch and he was not himself. He was waiting for that other shoe to drop. Literally.
I couldn’t help the sobs. I got my boy and we moved to a secluded table and I held him as I explained what was happening to Kylie. I held that 6-foot 4-inch, 175-pound boy. I rocked him as he asked if he would lose her. Would she lose her hair? Why has he always made such a big deal of her gorgeous long hair? I held him. I repeated the assurances Penny gave me. I told him time science and prayers were on our side. I say it was probably the second hardest thing I’ve had to do. I think it actually ties with telling Carson there is no cure yet for her disease and it is also life threatening.
Both his beautiful girls were in the fight of their lives.
After we got home from the state track meet, Wade told me Kylie was so sorry she would miss prom, which was the following weekend. He asked, ‘Can I take prom to her?’ Oh my heart. My heart erupted with every emotion. It leapt for joy. Our Wade is the most unselfish and giving person. A call to her mom – it’s a go.
Nothing can stop a total of 2 moms, 2 aunts and 4 sisters when they decide to throw a prom in 5 days.
Kylie was able to go home for the weekend and we held prom at her aunt’s home. They were serenaded with the acoustic guitar by Kylie’s sister and we had Olive Garden cater. We had the MOST fun decorating. It was the most perfect day. Prom 2018 was epic. Kylie and Wade were Prom Queen and King.
Since May of 2018, Kylie’s treatments are exceeding the doctor’s expectations and they are more than pleased. Glory be to God and all the prayer warriors. She is not cheering yet, but does sit on the sidelines and cheers on #7, her favorite wide receiver. Leukemia doesn’t own her. She’s shown who the real warrior is.
Carson has been hospitalized 6 times. This is the nature of the beast with three diseases. It’s unavoidable. However, she is physically stronger now than she’s ever been. Her labs are more stable. Her pancreas is still the most problematic and we are working towards a long term solution.
We’ve managed to make everyone one of Wade’s football games. Throughout all the crazy hospital stays, clinic appointments, we get there. We may not have caught our breath, but we are there.
Wade is having a beast of a football season so far. He was honored with the Built Ford Tough Player of the Week award for his performance in week 2. That’s a state-wide award. It’s huge in Texas. He was featured on a local news station. And, not on the sports section. CBS7 in Odessa, Texas, spotlighted him. They titled the piece, ‘The Pillar of Strength.’ Yeah, that’s what he is. He’s a pillar of strength. He takes what Carson can’t do, what has sidelined Kylie, and used it to propel him.
Throughout this latest storm, we’ve witnessed heartbreak, medical miracles, we’ve shed tears of fear/sorrow/relief/happiness. Two families became one family. We’ve leaned on each other and in the center was Wade. Wade remains a rock that holds up his little sister and his best girl. He says they are his strength, and the girls say he is theirs.
He is all of 17.
The hand of God has painted all over our lives. Some see so much heartache, we see faith being restored in humanity, a community rallying behind two girls fighting HUGE battles, two families coming together to help shoulder each other’s burden, and a young man teaching all of us how to see the beauty that is all around.
About the Author:
Courtney Orr is a stay at home wife, mother, and advocate. She’s a staunch advocate for healthcare for all and keeping pre-existing conditions covered without prejudice. Submit your own story HERE.