Here’s a brief overview of the events of Tuesday and Wednesday of this week, which have been important days for Elijah, his diagnosis of Crohn’s Disease, and the hope for remission through a plan for treatment. Check out previous posts for some context if you need it.
Tuesday Appointment - First to Shriner’s Hospital for E’s rheumatologist appointment. Molly and I took Elijah and Daniel (12). His doctor is wicked smart, not only concerning the arthritis he suffers as a residual effect of Crohn’s, but also because she gave timely advice on steps forward as parents of a child with a chronic disease. Parent’s in our position need doctors who, according to Dr. Onel, are willing to answer every question we have and never treat us as if there are dumb questions. We need doctors who are approachable, available, and who don’t make us feel like we shouldn’t bother them. Words like these made us realize, maybe more than at any point thus far, how serious this is for Elijah.
Ronald McDonald House - We left his appointment and headed to RMH in Chicago, just a few blocks from his next appointment at Lurie Children’s Hospital. Another wonderful experience. RMH Chicago is a lot bigger than the Loyola RMH, and Loyola’s was outstanding! It was fifteen floors of rooms and included meals from volunteer groups, retired NFL players came by signing autographs and posing for pictures, Cubs organization brought volunteers for a meal along with Clark the Cub to meet kids, a game room provided by the Bulls with memorabilia (including Derrick Rose shoes, table made from piece of the floor from 90’s championship teams, etc), and so much more. I’ve said it before but let me emphasize, RMH is a wonderful organization. Drop your change in the donation boxes at McDonald’s and help kids as their families deal with their serious health issues.
Wednesday - Up and out early for Elijah’s pill camera appointment in the brutal cold. He swallowed the large pill easily and watched it for a few minutes on a computer screen as it sat in his stomach. It could be seen because he wore a large sensor device wrapped around his torso and a shoulder strap with a battery pack. It recorded for 8 hours (15,000-18,000 photos) and we removed he sensor device at 4:45pm and turned it in at the hospital before returning home. He passed the camera last night. We should know the results in around a week.
Dr. Jeffrey Brown Appointment - This Wednesday afternoon appointment was the most important of our trip, and we are sure it’s the turning point of E’s health story over the last few months and into the years ahead. I can only give a brief description though we received a ton of information and help and direction from Dr. Brown.
- Diagnosis - Elijah has Crohn’s, though it’s a little atypical. Some Crohn’s patients have certain tell-tail signs that make it a slam dunk, know-immediately diagnosis. Some just don’t have this. Even those who have biopsies in areas of severe inflammation can come up without a clear Crohn’s result. E’s case is like that. It’s the many pieces of his health puzzle, according to Dr. Brown, that prove it's Crohn’s. As we have been learning recently, all the details are connected (eye problem, hip arthritis, gut inflammation, severe growth delay, etc).
- Possible Treatment - There are a handful of potential approaches to treatment. All of them attempt to bring an unhealthy kid to health (remission) and then work to maintain that health for the rest of his life. That means treatment essentially never ends. I’m not going to detail treatment options, but discussing them was the bulk of our very long appointment.
- Age & Growth - Our decision on Elijah’s method of treatment takes his age very seriously. Because he’s 14 we don’t have a year or two to see what works, unless it just ends up going that way beyond our control. There’s a greater urgency because of his size and age. He has age 10 bones. Something needs changing while his body is producing growth hormone off the charts, as it is right now.
- Treatment Decision - So starting in the next week or two Elijah is beginning treatment with Remicade. Treatment can only be done at Lurie, much like you would receive chemo (intravenously) except that he will get treatments every 8 weeks indefinitely. It starts faster than that: 1st treatment, 2nd two weeks after that, 3rd 4 weeks after that, 4th and following every 8 weeks.
This is a heavy weight on our family and we feel the level of commitment this is going to take. But more than anything we are eager and excited to get started. Dr. Brown showed us a growth chart of another patient he saw yesterday (without the personal info, of course) and showed the massive height and weight growth after treatment with Remicade. Dr. Brown walked into the examination room, saw how happy and health the kid was, and told him, “I’m sorry, I have to go see a sick kid (Elijah) in the next room. You are doing great.” We could see on the doctor’s face as he told us this story how much hope he had for Elijah’s treatment. We started to borrow his enthusiasm. The other doctor in the room (Dr. Chantal Lucia-Casadonte) looked at E and said something like, “You won’t even believe how good you are going to feel.”
Now, there are other things that could happen along the way. He may not respond as hoped to the Remicade, or at some point grow an immunity to it, etc. But this is the best, the most often successful, and the fastest way to get him back to health. It’s important we start him now.
Days/Weeks/Months Ahead - We are completing a few more tests for E in the next week and working out stuff with insurance. He will start Remicade treatment as soon as we can get it scheduled, so hopefully in the next couple of weeks. We will be back at Lurie 4 times in the next 14 weeks for infusion and our next appointment with Dr. Brown will occur on the same day as the 4th infusion.
Thanks as always to our amazing church members, friends local and far away, who have been following on the blog, Twitter, Facebook, and Instagram at all we’ve been going through. We appreciate your prayers, thoughts, “Likes,” and encouragement along the way. It’s really a joy during the most difficult of moments to find so many friends who care about E and the rest of us.