First and foremost, thank you all for your continued prayers over our family, specifically our babies. I'm happy to report Jaleigh is finally in good health. She's happier and sleeping better since her surgery, which makes for a better rested mommy and daddy. She's also very quickly putting on the pounds and resembling the Michelin baby. I'll not complain, though, because I'd rather her fat and happy than malnourished and miserable.
Justin's ENT called today and gave us his biopsy results. Let me say first we are seriously blessed with a very sincere ENT who truly, truly cares about his patients. He informed me first that Justin's lump was a tumor, but that it was benign. He said it was not, however; on his lymph node as they originally suspected. He said it was a growth called a neurofibroma, which is a result of a rare genetic disorder (think: 1 in 3k for type one, 1 in 50k for type 2) called neurofibromatosis. He told me he'd already called our pediatrician (again- AMAZING doctor, we're so blessed) and filled her in. He said in all the time he'd been doing surgeries and biopsies, he'd never seen a neurofibroma come back and that he actually had to go to the books to give me answers. He said our pediatrician was doing research as we spoke and we needed to follow up with her for x-rays, MRIs and bloodwork.
I called his pediatrician's office and made an appointment, and then (naturally, as every freaked out mother would...) I hit google. By the time I had myself good and freaked out, the pediatrician called me. Like I said, I seriously have the best pediatrician on the planet. She told me that she'd received the news and been researching ever since. She said she put herself in my shoes and knew she'd be freaking out so she had to call me personally to talk through it all.
Basically, from what she has said, there are two types of neurofibromatosis and further testing will determine which he has. She said she is almost certain we're dealing with type one, which is more common and less severe. The first specialist we will see is an opthamologist. He will do images of Justin's eyes to ensure there are no tumors on his eyes or the optic nerve. If there are tumors on his eyes or optic nerve, it will require semi-annual screening to monitor the tumors. They will also monitor his vision closely, as these tumors can cause complete and/or partial blindness. If Just has any type of growths on his eyes, that will automatically mean Jaleigh and our little bean will need annual testing, as well.
We will also see a geneticist, who will do some pretty extensive testing on Justin and the rest of us. The majority of the time, a parent passes this gene on to their child but this specific disease has also been known to spontaneously show up in a child and they will be a carrier from then on. They will test Jesse, Justin, Jaleigh and me to see which of us are potentially carriers. The blood tests aren't always completely conclusive, but his doctor said they'd at least see if they could get some results from it.
Justin will also be scheduled for an MRI of his brain. This is very important because it will determine whether he has type one or two. They will sedate him for the MRI. If he comes back with bilateral lesions on his brain it will mean an automatic type two diagnosis. It will also determine whether there are any other lesions or tumors on his brain.
Type one neurofibromatosis is a disease of the nervous system. Basically, anywhere he has a nerve, he can have a tumor grow. They will monitor any growths he has because, while they don't grow outwardly, they can "grow roots," if you will, and grow inwardly, damaging vital organs. There is a 3-5% chance each of these benign tumors could turn cancerous. Anyway, the most common places for these tumors to pop up (though they can pop up virtually anywhere) are the spine, eyes/optic nerve, brain, kidneys, and neck region. As long as they've 1) not turned cancerous and, 2) aren't affecting vital organs in life-threatening manners, they will not surgically remove them because many times the risk of surgery is greater than the benefit.
His pediatrician said that, even in the mild cases, we can expect there to be growths on the eyes/optic nerve, scoliosis (very common in children with type 1), and, if there are any growths on the brain, we can expect behavioral changes to occur (think: ADD, attention issues).
The ages where this disease is typically caught is from 3 years-13 years, so Just falls right in the criteria where it can be caught. Children who have it typically are shorter in stature, have larger heads, growths under or on top of the skin, and spots with skin discoloration. We go in to the pediatrician in the morning where she will strip him down and do a full exam so they can start monitoring any other growths on his little body.
Some of you probably remember the unexplained seizures he had when we were back in NC. This diagnosis explains the seizures, his short stature, and his oversized melon. :)
I'd had full faith when the phone rang today the doctor would tell us it wasn't cancerous and everything was fine. I've spent the afternoon in a state of shock. I know this is better than cancer but let's face it, it still sucks. Bad. I wouldn't wish it on anyone, but I don't understand why it has to be my baby. We'll not hold our heads up, rather we'll get on our knees because this is just another storm that God will carry us through. Jess, the babies and I are blessed in a big way and this is just another means of testing our faith. By the grace of God, we'll prevail and God will use this for His glory.
I got the phone call today at 2:00, and then one of my friends pulled up in the driveway. She stayed and watched the kids, talked me through stuff, researched, and just loved my family and me until 8:00 this evening. Then she took Sis home with her so we could take time to figure out what our next move will be, communicate with Justin what's ahead of him and just be with him. As difficult as it is to be away from our families, God has provided us a family here and we're so grateful to each of them. The impact they've had on our lives is unspeakable.
So what can you pray for? Pray for peace and understanding as all this unfolds. They will be doing a LOT of checking, poking, prodding, blood-drawing, and questioning to my little angel in the weeks and years to come. Pray for peace and understanding for him. It's so much for his sweet little brain to comprehend. This is something we must monitor for him for the rest of his life.
Momentarily, as this all unfolded, I was so mad at God. How in the WORLD could he do this to MY baby? My perfect baby? Another dear friend called and prayed with me and I realised, God didn't do this TO my baby and this is no surprise to Him. He knew what was coming, how we would react and He was there waiting for us once we processed it all. We're finding comfort in that for now. So, thank you for your prayers, past, present and future. The support you've given us has carried us through to this point. I've taken a muscle relaxer, brought my son downstairs to snuggle, and I'm ready to climb up in the Father's lap and rest in him. Good night.
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