A Heartbreakingly Beautiful Year for Our Little Boy
I’ve been writing this post in my head for some time now, yet I hesitated to put pen to paper because there’s so much relive. It all feels a bit overwhelming. 2018 was a roller coaster for our family that I wasn’t even close to being prepared for. It just now feels like we are coming up for air.
A Little Backstory
Where to begin… Shortly after Knox learned to walk, we noticed he had a slight limp. It didn’t seem to bother him or effect his physical abilities, so we honestly didn’t think much of it. By the the time he reached two years old, the limp appeared to be more noticeable. He was always cranky (especially after waking up) but we never really put two and two together. When he reached two years old, we went in for his yearly check-up and they decided to do an x-ray on his legs. Everything came back normal and we were told he would probably grow out of it.
Fast forward to April 2018. We took Knox for a doctor’s visit because his limp was becoming more severe and his left knee seemed to be enlarged. At this point it had been a little over a year since his first x-ray.
While we discussed his symptoms with his pediatrician, she told us that he could potentially have a leg-length discrepancy and that may be causing his limp. However, the enlarged knee (also known as Hemihypertrophy) could be a sign of cancerous activity in his stomach.
Cancerous. When she uttered those words I felt like all the air was sucked out of my lungs. I just stood there feeling nothing but warm tears filling my eyes. I couldn’t focus on anything else she was saying. When we finally made it out of the doctor’s office and into the car, every little bit of strength I had been holding onto in there came unraveled. I sobbed in Jeff’s arms. This just didn’t seem real.
We had to immediately drive to Cook Children’s Hospital and have x-rays done on his knee and the entire lower portion of his body. He screamed and cried, I cried with him and it all just felt like a nightmare.
We left the hospital and waited what felt like an eternity to hear results from our doctor. She called later that evening with some good and not-so-good news. His x-rays did not indicate a leg-length discrepancy, but there was still some uncertainty about what was going on with his knee. So, we were scheduled to meet with a Genetics specialist with the
Pediatric Oncology group as well as a Rheumatologist to get to the bottom of it.
Trying to Cope & Get Answers
I don’t think I’ve ever cried so much in my life as I did in those few weeks. The thought of losing my baby consumed me. I couldn’t sleep at night, it made my stomach physically hurt. I’ve never felt so helpless and heartbroken. The support from Jeff and my parents carried me through a very dark time. Having people root for you, hold you up, be in your corner and love your children wholeheartedly is a profound gift that will not be lost on me.
Over the next several days, we worked with our pediatrician to get on these doctor’s schedules as soon as possible. She made many phone calls on our behalf and we will forever be so grateful for her diligence in getting us the answers we were so desperately seeking for our baby boy. It felt like life was moving in slow motion while we waited to get in front of these doctors.
A Diagnosis for Our Baby
By the end of April, we were scheduled to meet with the Rheumatologist. She was incredible. She took her time, let our boy warm up to her (not easy if you know Knox) and she went to work. She let him run around the entire office and at any chance, began to closely examine his little legs, feet, ankles, hands, knees…she knew almost immediately what was going on with him.
Our baby has Psoriatic Arthritis. We didn’t know what to think. Isn’t arthritis something that older people get? Even pamphlet had a guy with grey hair on it! She felt confident that this was the only diagnosis and there was no way he had Hemihypertrophy. She believed the swelling in his knee was a direct result of the arthritis. There was extensive swelling in multiple areas of his little body (fingers, toes, knee, ankles, etc.). The swelling in one of his ankles was so bad, he wasn’t planting that foot when he walked. It explained the limp so clearly. Since there is no history of Psoriasis in our family, there’s a possibility that his Arthritis is juvenile and he could grow out of it. Only time will tell. All this time we thought our little boy was just a cranky, irritable kid and it turns out he was just in a lot of pain and couldn’t tell us. As a mom, that reality cut me like a knife.
Meeting with Genetics
Even though the Rheumatologist was confident that he did not have Hemihypertrophy, we still insisted on meeting with the Genetics specialist so we could have some peace of mind. The thing with this diagnosis is that even if your child does not have cancer, they have to be tested every 3 months until they are seven years old. Children with Hemihypertrophy are at a much higher risk for developing cancer than the average child. I was living in fear that this cloud would follow us around for years to come. It was more than I could handle at times.
At the beginning of May, we finally met with the Genetics specialist. We were on edge and so nervous. It felt like we were in that exam room for an eternity before she came in. When she finally arrived, she reviewed Knox’s case, examined his knee and concurred with the Rheumatologist’s diagnosis. The enlargement in his knee was due to swelling from the arthritis and was not showing signs of Hemihypertrophy. Talk about a sigh of relief! We left that appointment thanking God for his protection over our son.
Summer rolled around and Knox was starting to show signs of improvement once he began treatment for his Arthritis. We slowly started to notice the swelling going down in his knee and his limp was getting better.
It’s been about eight months since our son’s diagnosis and after adjusting his medication a few times, we are finally in a really good place. The swelling has significantly decreased, his pain has subsided, he’s more flexible and agile than ever and he is so much happier. The limp when he walks is completely gone. He’s eating better than he has in a very long time.
We now have hope in place of fear.