JuJu's cancer diagnosis was on January 14th 2022, but it was the whirlwind of Dr visits and missed diagnosis weeks before that lead us here. We first noticed something was wrong the week of Christmas when she started to lose her appetite and complaining her belly hurt. When she did eat or drink she would immediately complain about her belly hurting. Having a history of constipation we assumed this was the issue. We thought this was a result of her holding it and the pain was from having to go. But as the pain and crying became more frequent and more intense we felt something else was going on. She would cry out day and night to "help me, help me, my bewwy hurts." Screaming random words and names she's never even said before.
We made our first appointment with her pediatrician the Monday after Christmas where she was seen and diagnosed with "Strep." A common complaint with strep is stomach pains. We didn't feel like this was the cause, but being unsure we started antibiotics. The next day we called back and requested more testing because our instincts told us this isn't right. Her Dr. agreed to order an x-ray, so Wednesday we brought her in to have it done. The results showed she was extremely constipated, again kind of what we expected, but still unsure why this time was so much worse. So we then started her on medications to loosen the stool and help her go, along with suppositories and an enema. At this point were rotating 4-5 different meds to try and help her pain and symptoms.
Fast forward to Friday, New Years Eve. Still no relief, constantly crying out in pain we decide we need to go to the ER because we can't do this all the way through another night. Mom and dad have been up every night with her and running on fumes for the last week. Off to the ER we go. There an ultrasound was performed, and reviewed and some how showed nothing going on other than some constipation and one enlarged Lymphnode in her abdomen. Somehow an 11 cm tumor taking up approximately 70% of her belly was missed. How this was missed we will never know. So here we are again heading home with no answers, no relief, and no clue what to do.
On Monday we call the pediatrician again urging them to help us figure this out. He referred us to a gastro specialist at Ochsner and they scheduled us for February 1st. Almost a month out, a date that by no means was going to work for us. After pressing them and a call from our Pediatrician we were able to be seen the next day by ironically the Dr that specialized in the pancreas. During that visit he could see the defeat in our eyes and hear the plees in our voices. So instead of chalking it up to constipation although that's what he expected, he ordered extensive bloodwork. Bloodwork we would have to wait two days to get because the attempts that day all failed. After being stuck in both arms and both hands, a blown vein, and not able to get blood we said we'd have to try another day.
That day would be Friday January 14th. Courtney was able to bring her in around 12:30 and this time the blood draw was a success. Thank God...because it was only 2 hours later when we got a call telling us we needed to get to the hospital and she would most likely be admitted for Pancreatitis. This was also the day we planned on keeping our nephews for the weekend as Courtneys's brother and SIL booked a weekend trip to Chicago. But something in her SIL's heart kept telling her they didn't need to go. So they missed their flight and decided to just spend the night close to home in New Orleans. That too never came to fruition as they'd be turning around at the check-in desk to come pick up our nephews so we could go to the hospital.
We packed a small bag for one or two nights and off we went. When we got to the hospital they were expecting us and got us back to the pediatric ER within minutes. Then another trip for a quick ultrasound to look at her pancreas. Once completed we went back to the ER room and while waiting on the results I decided to go grab some food.
Here are the two moments neither of us will ever forget...Courtney sitting with Ju, alone in the room waiting on me to get back receives a notification that the ultrasound results have posted on Ju's my chart. Not really concerned or expecting to see much she opens it and starts to read. Being a nurse she quickly realizes what's unfolding in front of her. Beginning to panic and become hysterical she calls me. I'm standing at the counter of Acme on vets Blvd getting ready to sign the receipt for dinner when my phone rings. Immediately I hear in a crying frantic voice "you need to get back here now! There's tumors, it's everywhere!" Running every light between there and Ochsner I get back to the ER and run into the room to a sight I will never be able to erase and a feeling that's indescribable. The Dr. was talking, but I can't remember anything he said...I just remember asking "so you're saying she has Cancer" and his response being "yes sir we believe that's what it is, the oncologist is on his way to the hospital to speak with you"
That moment is when our lives changed and Julianna's Journey began. We are thankful for the Dr's that kept pushing and listening to us and not just dismissing our concerns. There are so many protocols and procedures when treating patients. But our advice is to push and push harder when the answers you're getting don't feel right. We have instincts for a reason, follow them.
