He has elevated white blood counts, so we need to send him to Children’s right away. We can’t do anything else for him here.
That bomb was dropped on us after we brought my son into the ER to figure out the source of his abdominal pain. We were initially told that he was dealing with constipation, but something in my heart told me it was more than that. He had been sick for random days at a time for about a month. We were dealing with vomiting, restless nights, screaming fits of pain and more. It was awful to watch him go through that, but we thought (and were told by our pediatrician) he simply wasn’t recovering from a stomach bug or could be constipated. He would have a rough night, wake up to go to the bathroom the next morning and would have several days without incident.
Little did we know it was so much more.
After the doctor told us the plan to transfer our son, I took our daughter to my sister’s house to spend the night. She had been with us for what was going to be a quick run to the ER. (Is that even possible?) After I got her settled, I mechanically drove home, packed a bag and got back to the ER just in time for my son to be transferred into the ambulance. I just stood there sobbing – no mother should have to see her child loaded up in an ambulance.
When we arrived at Children’s Hospital, we were given a room in the ER where we waited for about three hours to get an ultrasound to see what was actually happening in his abdomen. My son was screaming every few minutes with pain. We. Were. Exhausted. Around 3 am, we were brought to the ultrasound room where they looked at his stomach for quite awhile. The tech kept pointing out enlarged lymph nodes, but my mind just wouldn’t allow me to go there, to imagine the possibility of what that could mean.
A few hours later, a pediatric surgeon knocked on our door. He told us that they needed to do exploratory surgery on our son as soon as possible, since they weren’t exactly sure what was wrong with him. Tears just started to fall as I thought about what he was about to go through.
We walked with him up to the surgery waiting room. He looked so small in that big bed. He was so tired after not sleeping for a few nights. But, he was so brave as he laid there while we explained what was going to happen. We told him we loved him and that we would see him soon. Final kisses were given and we were shown into the waiting room. My heart was so heavy, but I just wanted him to feel better. If surgery was what it took, then we would handle each obstacle as it came.
The doctor came in to the waiting room after an hour of surgery. His first words were, “He’s okay.” But his demeanor was telling us there was something more. Then he said,
We removed a mass from his stomach and it was lymphoma.
Time stood still. I could barely comprehend what he was saying. Was he playing a cruel joke? Is he really saying my child has cancer? What did that mean? Is he going to die? How can we fix it? Let’s start right now! My baby is NOT okay! However, he also told us that the mass growing was causing his small intestine to twist, essentially cutting off the blood flow and causing the intense pain. Had they not found the mass when they did, his bowels would have started to die within hours. And if the lymphoma had started growing anywhere else, it might have been much later before we found out about it and the treatment would have been longer and more intense.
My son slept through most of the first few days of our stay on the surgery recovery floor. His body had taken quite a beating with the abdominal pain the month prior and then the surgery. He would wake up asking for me, and I would quickly rush to his side. He just wanted a familiar face near, since we were in a new and strange place. My husband and I would sit by him for hours rubbing his back or holding his hand – just to let him know we were there with him. We were immensely grateful for all of our friends and family coming by to bring us food, small gifts and to be supportive during this scary time.
His birthday was four days after surgery and we celebrated the best way we could. His nurses brought in a few gifts and we had friends and family stop by with balloons. But the best thing of all was he got his nasogastric tube that was helping to remove stomach contents after surgery removed so he was able to eat a popsicle and jello! He was elated! It was the first thing he was allowed to eat for three days! We also got moved up to the oncology wing that same day…to begin a chapter of our lives we will never forget.
On his 4th birthday, my son was officially diagnosed with Stage 2 Burkitt’s Lymphoma.
We were immediately told that Burkitt’s Lymphoma was a very treatable cancer, but was also very aggressive. We needed to start treatment right away. While he was still recovering from surgery, they allowed us to go home for the weekend. We were scheduled to come back and start chemo the following week. We had a great weekend at home, relishing in our time together as a family.
Once we were readmitted, I honestly had no idea what this stay would bring. Would he be sick all the time? Would his hair fall out right away? We were prepped on so many possibilities that our heads were swimming with things that could happen. That was a very long week in the hospital, but again, we were so blessed by friends, family, amazing nurses and doctors to help us get through it. Children’s also provides Child Life Specialists that really help when the medicine gets tough, there are hard procedures or there for when you just need support. Those ladies always brought a ray of sunshine with them through the door.
Chemo was rough, and anyone who has gone through it will likely agree to that. Thankfully his side effects were minor. He never really got sick, his energy level was average, and his hair fell out when we were almost done with his treatment. He endured two rounds of chemo and then was cleared to be in remission. Those days were some of the hardest we have ever had to endure, but we were surrounded by so many people who prayed for us, brought us meals and checked in.
I am thankful for we are where we are today. He has recovered from his surgery, has gained weight back and is eating normally. His hair grew back (including his beautiful long eyelashes) and is living life as a healthy kid now! We are being monitored every month by the fabulous doctors at OU Children’s and I can rest easier at night knowing that they are a phone call away. He’s still taking an antibiotic to keep away any bacterial infections, but we are at home, together, as a family. I wouldn’t change that for the world.
There are so many families that are dealing with cancer. Many of them do not have the outcome we do, and my heart is so heavy for them. It’s hard watching a loved one go through treatment and recovery. But there are so many things we can ALL do to help them.
To all of those who helped our family during my son’s diagnosis, hospital journey and at home recovery, I thank God daily for you. You were a light to our family! You helped us through some insanely rough days.
Every day is a gift and I can say today my son is cancer free! I could not be more grateful.