Update - Tuesday, September 13

Noah went to see the dermatologists at Springfield Clinic today in Effingham. They were incredible. They believe he is dealing with something called CGPD. They also think that the steroid cream he has been on is making it worse.

They prescribed new treatment and promised to call at least weekly to check up. They've already called multiple times today.

Also, Noah has an appointment at a pediatric nephrologists in St. Louis next Tuesday.

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The last few months (especially the last few days) have been an emotional journey. My son Noah (my only boy and the middle child of my five kids) is dealing with some mystery illness, and for a few days Amanda and I had serious concerns about cancer.


Noah is a pretty normal kid. He swims on the swim team. He loves riding his bike and helping me in the shop. Besides struggling to read (we think he might be severely dyslexic) he is just like every other nine year old boy I know.

Ailment 1: Eyes

But last year, right before camp, we thought he had pink eye. Only his pink eyes never went away with eye drops. So the doctor thought he may have a scratched cornea. But after a month that never healed. Finally we were referred to a pediatric ophthalmologist in Champaign who quickly determined that he had something called uveitis. Basically, there was inflammation in his eyes that was causing scarring and vision loss - and were it not treated - it would continue to get worse.

So for the last year Noah has had (sometimes weekly) doctor appointments for his eyes (an hour drive away), and has had to take four to five eye drops multiple times a day.

Ailment 2: Rash

A few months ago, Noah started developing this rash around his mouth. The rash did not seem to bother him and it has not responded to any treatment. But it has continued to spread. Now it surrounds his eyes and it's moving up his forehead and down his body.

Ailment 3: Random bouts of tiredness

Just as concerning for us have been periods of random bouts of extreme tiredness:

• After sleeping all night, he'll fall asleep for hours in the middle of the day.
• We'll go on a normal hike (something we've done together dozens of times) and he'll stop two minutes in and you can tell he can't do it.
• During the championship swim meet, he just curled up in a ball and slept for hours and we couldn't wake him for his events.

These bouts of tiredness come and go. For the last few weeks, he's been totally normal. But when they come they are extreme.

Ailment 4: Random vomiting

Finally, he randomly gets sick and vomits. This might happen once a month. After throwing up he seems just fine and shows no sign of having a stomach bug. (No loss of appetite or other symptoms.)

Figuring it out

So a big part of the last several months for us has been trying to figure out what is going on with our son. We've taken him to multiple doctors: pediatrician, ophthalmologist, rheumatologist, pediatric GI doctor and they have run a bunch of tests.

One thing that totally enraged me was how hard it was to get him to see a dermatologist. Even with a rash spreading across his face and body lasting for months, and even with a referral - no doctor in either of our local hospital systems would see him in less than two months. We had to call (what felt like) every dermatologist in Illinois to get him an appointment before November. He's sees that doctor next week.

Roller Coaster Week

Both the GI doctor and the rheumatologist have shown concerns about his kidneys and run a bunch of blood and urine tests. On Wednesday, the hospital's app informed us that one of those tests came back and was very off. Something called a Beta 2 Microglobulin test.

So we googled it. Big mistake. Beta 2 Microglobulin is commonly used to detect blood born cancers like multiple myeloma, lymphoma and leukemia. My biggest fear through all of this has been that Noah had leukemia, and this test seemed to confirm that.

We flipped out. We couldn't get any doctor on the phone Wednesday or Thursday. So for two days Amanda and I have been dealing with this terror. We didn't want Noah to know about it until it was confirmed by a doctor, and we didn't want our other children to know about it - so we couldn't talk about it.

For two days, I've been trying to remind myself that God is in control, and that whatever His plans for us, He knows what He is doing and He is always good. I've been trying to do what 1 Peter 5:7 says:

Casting all your care upon him; for he careth for you. 1 Peter 5:7

I've tried to work and do things just as I normally would, and to not worry about this.

Good News

Finally, about 8pm last night, the rheumatologist called. He told us we shouldn't be concerned at this point about leukemia because that would likely show up in other ways in his blood work. He thinks Noah might have an extremely rare disorder called TINU and is working on getting him in with a pediatric nephrologist in St. Louis.

So we went to bed last night and woke up this morning very encouraged. We are hopeful we will get Noah into see this doctor (and the dermatologist) next week and at least begin to get this under control.

So, if you think about it, would you pray for Noah and pray for us as we (once again) go through this season of lots of tests and doctors appointments.