Elijah & Crohns Update 8.6.15

Our 14 year old, Elijah, has now gotten his 5th Remicade treatment for Crohn's Disease. Here are some previous updates, if you are interested in his story. Here's what we learned this week.

First we (me, Molly, Elijah, and Danny) met with Elijah's rheumatologist on Tuesday at Shriner's Hospital in Oak Park. E had received some physical therapy for arthritis at her request and he's done well with it. No need to continue, though he is still a little tight. E has morning soreness, but mostly can do whatever he likes, so we feel this area of his health is better. 

We went to the Ronald McDonald House in Chicago (RMHC) after for our overnight, but had most of the day to play around. So we grabbed some Shake Shack for lunch, which is Elijah's absolute favorite place to eat in the city. Then we headed to Millennium Park, which was a favorite place to visit when our kiddos were smaller. Haven't been there in years. It was a wonderful, relaxing time and the boys had a blast. 

Then back to the room to relax, then some dinner as provided at the RMHC...italian beef, chips, fruit, and root beer floats. After dark we decide to head back out and walk down to Navy Pier. Not to do anything, but just enjoying a gorgeous evening in Chicago. 

Wednesday Elijah had 9am Remicade infusion at Lurie Children's Hospital in Chicago. He was upbeat and happy the whole time, which has not been his experience in previous treatments. He's not a fan of the way Benadryl makes him feel. But this was the best he's felt during treatment, which was a real blessing since we didn't go home right after like usual. 

At 3:10pm, and after lunch at Blaze Pizza, we had an appointment with Dr. Brown, E's gastroenterologist. This is the first time we have met with his doctor since his diagnosis. That was the plan from the beginning. They like at least 4 treatments before a follow-up. 

A little background: As of the 4th treatment, we were concerned that E wasn't growing enough, or fast enough. We felt there may be a significant growth spurt, so the worry was that the Remicade wasn't working, maybe that his body was developing antibodies for it. Two different tests in the last several weeks seemed to show that the Remicade was working well, but we wanted to hear the doc's explanation. 

Here's doc Brown's analysis.

1. Elijah is a healthy boy. There is no evidence of Crohn's sores in his body. Everything from previous tests as well as blood taken Wednesday showed every level of every area of possible concern shows nothing to be concerned about. Everything in his body and blood looks fantastic and the Remicade is doing the job.

2. Elijah is growing better than ever. His growth chart before diagnosis showed plateaued growth. Really bad. Really skinny. Really small. His growth chart since Remicade treatments have started is nearly straight up. It's not explosive growth, but it's solid and continual growth. 

We learned months ago that Elijah's bone age was that of a 10-11 year old though he's 14. The doc said that's a good indicator that all the growing that he hasn't done isn't a closed door to future growth. If his bone age was of a 14 year old, he may never get too big. But his body is still ready for explosive growth and we are very thankful for that. 

3. Elijah's way forward is patience and calories. With everything headed in the right direction for him, the goal now is getting him good calories. He's eating fairly well, though not eating everything in site like kids often do when growing rapidly. So we are going to start supplementing his diet more with something like Carnation Breakfast Essentials which isn't cheap but helps him add good calories in a simple way. The doctor said to think of how we can do things daily that add up over time to get him the stuff his body needs to grow. 

We don't know if he will take off quick with more growth or just keep going slow and steady. Either way, the doctor is convinced it's going very well and we can be happy he's a healthy, growing boy. While Remicade treatments will continue every 8 weeks, we won't see the doctor again until mid-winter since all is going so well. 

Thanks, as always, for the many who have been praying for Elijah and our family. Thanks for your expressions of love and concern. I get asked so often about his health, and just in the asking we feel well loved. We've even received some gifts from some of you to help and they have been a tremendous help to us. We love you and thank you so much.

Elijah Crohn's Update 3.6.15

Brief update after Elijah's first infusion of Remicade.

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Infusion - Elijah's first infusion went great. Stayed at Ronald McDonald House (RMH) Monday night and infusion was first thing Tuesday at Lurie Children's in Chicago. Given Tylenol, Benadryl, and Remicade. Benadryl made him a grump for a bit, but the Remicade had no visible effects. Seemed to take it great. Very proud of our boy. 

We took a photo next to a Lurie pillar (below) so we can track his growth with each visit, if we can remember to take the picture. :) We are believing that God and doctors and meds will get our kid healthy and growing. Praying toward that end.

Ronald McDonald House - E was a little bummed that we stayed Monday night and not Tuesday night because on Tuesday there were free tickets to Northwestern vs Michigan basketball game. More bummed to know it went to double OT!

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Next Appointment - We set up next three appointments. Next one is Tuesday March 17. We got the big room at RMH the night before so we can have all six of us there and that will put us in the city for St. Patrick's Day. Big celebration is Saturday and we'll miss that, but hoping the river will still be bright green for the kids to enjoy! 

Test Results & Other Health Issues - A bone scan and blood tests have shown Elijah's bones are weak and vitamin D is way too low. We knew this was possible and the doctor already had him on supplements just in case, but now we know these are real issues. He is on serious doses of vitamin D and calcium. 

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City & Stuff - We are trying to make these appointments fun enough to keep E encouraged. So we saw some sights Monday evening, especially noticing some architecture since E's working on a project about being an architect. He took a lot of pictures. We perused shops on the Magnificent Mile.

After the infusion and before leaving for home on Tuesday, E and I dropped Molly at the parking garage and walked in the rain for a couple of blocks to get to Do-Rite Donuts. Those are the best donuts I've ever had. And as someone who has never been a huge donut fan and NEVER go out of my way to get one, this place will get our regular business, you know, for the sake of Elijah. :) If you are in Chicago, I highly recommend finding a Do-Rite old fashioned donut. 

Elijah Crohn's Update 2.19.15

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. 

1. 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). 
2. 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. 
3. 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. 
4. 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. 

Elijah Update 2.16.15

Last Couple of Weeks - A lot has happened the since my last update, though I have put other updates on social media along the way. Elijah’s upper and lower GI show Crohn’s Disease. Crohn’s and colitis make up what is called Inflammatory Bowel Disease (IBD). It’s NOT Irritable Bowel Syndrome, which is common mistake. Radically different. This is a chronic, lifelong disease that causes ulcers in the intestines.  And his diagnosis is not a “for sure” thing yet, but the doctor is confident that it’s Crohn’s. A pill camera is going to, hopefully, give us an official diagnosis. More on that below. 

Crohn’s is likely to have caused his eye trouble last year, hip arthritis now, and his plateaued growth the last few years. Often when diagnosed properly and treated correctly it can go into remission and kids will begin to grow, even go through major growth spurts. E is hoping for that! 

Crohn’s is serious and when intestines and other areas of the GI tract are affected over a longer term, it can require surgery to remove scarred areas. 

After his scopes E was put on antibiotics (4 pills a day for a month) and he was referred to the IBD Center at Lurie Children’s Hospital in Chicago. A week of antibiotics left him a mess. Growing abdominal pain, difficulty eating much, and even vomiting. It took a few days to figure out the meds were what was causing it. A call to the doc and he got off the meds and now feels MUCH better.

Elijah As Of Today - After stopping meds and having his hip gradually improve, Elijah is feeling just about as good as he did before Christmas/New Years when the hip pain started. He still has a tiny limp and different daily aches, but doing pretty well considering everything. We haven’t seen him laugh and joke and sing this much (yes, he sings LOUDLY around the house at times…which will shock some folks) for several weeks. We are very thankful.

Camera Pill Test - Saturday and Sunday Elijah did an at-home test to make sure he could swallow and pass the pill camera. They gave him a test pill which is the size of a large grape, as they put it. He swallowed and passed it fine so the test is on. I don’t know the company that make the pill, but it’s something like this photo.

Test & Appointments This Week - We leave early Tuesday morning (tomorrow) for Shriner’s Hospital to see his rheumatologist. Then we stay in Chicago at the Ronald McDonald House near Lurie (Danny and I stayed at the RMH at Loyola Hospital near Shriner’s last time) on Tuesday night. Wednesday, first thing in the morning, E takes the pill camera, wears a recording device for 8 hours, and then turns it in so they can view it. We don’t know if we will have results from that immediately on Wednesday or not. The camera passes naturally and doesn’t need to be recovered (whew!). He has his first appointment with his new gastroenterologist, Dr. Brown. <reader can insert joke here>

Sarah (18) and Jack (16) will be home and at school and all that the next couple of days while Daniel (12 this month) will be with me and Molly and Elijah. Thanks for your prayers for our boy and for us. We all appreciate it so much. It’s hard to describe how difficult the last few weeks have been for us. Honestly, we really need a break. But we keep on as the Lord strengthens us.