It’s a beautiful Sunday morning back in December of 2013. I’m psyched to be working on my final discussion boards for my second course of my Masters. The hubby knew I was stressed. He took all three kids away for a few hours, so I’d get a little peace and quiet, while I wrapped up my class. Sipping on my diet Dr. Pepper, selecting my iTunes playlist, I settle in getting down and dirty with my on line colleagues. I’m in my zone, when the silence is broken by the annoying ring of the house phone. I try to let it go. Something tells me I need to check the caller ID. My heart stops. The display flashes the orthopedists number. Our twelve-year-old had been complaining about severe knee pain for several months. Finally, after she complained loud enough, being third she really needs to scream loud to get attention, we sought medical attention. Now the phone display fills me with fear; only bad news from a doctor’s office arrives early on a Sunday morning. Lifting the phone, a weak, “Hello” squeaks out.
“Hello, is this the mother of the little? This is Doctor Cook from SCOS.” The pause is awkward; I don’t want to answer.
“Yes, this is she.” The lump in my throat builds.
“Good morning, I was going over test results this morning. Little’s case caught my attention. The good news, nothing is torn, and we only see a minor build up in her plica band. These are all good things we can easily fix to make her more comfortable.” I’m starting to feel relief. This is short lived.
“However,” that one word you never want to hear, “we do see a band of 5 to 7 lymph nodes behind her knee. This is not usual. Lymph nodes are not located in this area. I’ve gone ahead and sent her her files onto Children’s Hospital. They have an opening tomorrow, and I’d suggest you get her over there. It’s probably nothing, but with her age, and if she was mine, I’d get her there.” His voice trails off. I stand in the kitchen with tears swelling in my eyes. The message shouting in my head reminds me doctors don’t call on Sundays unless it is bad news.
I scramble for a pen and paper, start writing down all the information he rattles off, thank him for his diligence, hang-up, and let the tears flow. Of course I jump on the net and start researching. This is the worst idea. I find every terrible childhood disease possible. By the time Mr. S. arrives home, I’m a mess. He’s taken back when he sees my read swollen face and ushers the kids upstairs. Through sniffles, chokes, and gasps I spill the beans. We both sit stunned and he proceeds gluing me back together, reassuring me not to worry.
Before long we’re right back to massive testing. Nobody can give us any answers, but the next two months of testing are grueling. The little is a trooper though. She gets poked and prodded without a complaint or a tear shed. She just wants the pain to subside. Before long the medical community nails down four possibilities.
- A rare form of cancer – not sure they’ve seen it before
- Rheumatoid Arthritis (RA)
- Autoinflammatory Disease – an offshoot from RA
- Osgood-Schlatter Disease – most severe form
This really does not help. I continue researching, she’s still in pain, Mr. S. continues to be a rock. I try shoving down all the emotions, as my research leads me to places that are dark and disturbing.
After more than seven months of testing, the medical community is still stumped, her knee still hurts, and we are still left with researchers around the nation perusing her file. She’s been allowed back to physical activity, which helps her mental state. Finally, the doctors rule out cancer, but want her markers checked for the next several years. This does not reassure my shattered mental state. They dive in deeper into RA and Autoinflammatory Diseases, because each of these can also cause lymph nodes to randomly pop up when the body is trying to fight something off. They begin treating her knee with physical therapy because one set of doctors believes Osgood-Schlatter Disease, in its worst case scenario, is part of the key.
This has been an ongoing situation which still looms over us. The doctors are still searching and testing her. Her CHOC doctor is an RA specialist. She has turned much of her case over to an Autoinflammatory Disease research team, because they’ve never seen anything like this. When your child goes through something like this you feel isolated, sad, and alone.
A few months ago as I finished up my first book, and began digging deeper into how to go from creation to publication, I was fortunate enough to run across an author and his wife who deal with a young son who suffers the effects of one type of Autoinflammatory Disease. Sloane Howell and his wife opened my eyes to a group, autoinflammatory.org, who helps families dealing with children diagnosed and handling living with these types of issues. Not only does a disease cause physical issues it also takes loads of resources and finances to navigate through it all. Often times the financial burden is overwhelming. I’d researched the disease, reading through dry boring medical journals, but came up with nothing that helped with the emotional side of a diagnoses. The Howell’s shared information lead us to a whole new resource. The blessing of sharing resources can never be repaid properly when you’ve been running scared for a long time.
The bottom line of things I learned along the way, although our little is still an anomaly to the medical community, resources are available. The need for parents to share information is invaluable. There are so many supportive groups around families need to embrace them because the emotional road is too difficult to handle alone. Finally, resist the urge to fill your brain with internet searched diagnosis. Filling your head with needless information before diagnosis only results in a little ride to crazy town for a while! And the biggest lesson learned lean on your spouse or partner. Together you can both reach the highs and muddle through the lows. Sharing can be difficult, but when you’re in the trenches together nobody else can touch you.