That roller coaster we stepped onto in July is finally slowing down! Here are the cliff notes. 

In July we found out Carson was having toxicity from his tumor medication that was showing up in his eyes. It was causing uveitis. 

At one point we took him off the tumor med because some kids have been able to come off of it with no growth and we hoped this would solve the eye issues with the offender (tumor med) being taken off the court. 

In October the tumor grew rapidly. We put him back on the tumor med...on a 1/2 dose. In November we added another med to hopefully control the toxicity. 

On January 23rd Carson broke out in massive hives. Hives that were 10+ inches in diameter. They were unbelievable and they were from the new medication. 

Carson decided at that point to go with steroid eye drops because the risks of new meds was more than the risk of steroid-induced cataracts. 

After 9 months of upheaval, today we have stable cans and stable eyes. Maybe we have found the right balance of meds to keep his tumor happy and his eyes happy. Maybe.....

Plot twist? 

The pressure in his eyeballs has been slowly increasing. (This is different than Intracranial pressure of ICP or papillidema that we have battled all 13 years of diagnosis which is pretty good right now.)  Yesterday it was the highest end of normal. We will return to Memphis in 4 weeks for an eye exam to make sure his eyes are still happy and to eliminate one of two causes of increased pressure. 

One cause of increased pressure is the steroid eye drops. While they are helping his optic nerves and uveitis, they can cause increased pressure. The other cause can be "scarring".  The eye constantly produces and drains fluid. There is a drainage ditch between the iris and the lens. That can scar over from the eye drops that are helping uveitis and prevent the drainage, therefore causing pressure to build up. So if there is scarring our eye doctor will scrape it off. If that does not make you cringe I don't know what will. If there is no scarring we would presume the pressure is from the drops alone. This would be treated with another eye drop that is used to treat glaucoma. 

Please pray:

No scarring and the pressure would remain stable. Please also pray the uveitis remains happy on the number of steroid drops per day that we are currently on (which is 3). 

Please praise God along with us for a stable tumor and no inflammation. 

Praise God that Carson is easy going and not much ruffles us. 

Thank you all so much. 
We love you!