Infusion 2

Caleb had his second infusion today. His symptoms have been improving and he gained 7 pounds in the two weeks since his first infusion! I am very excited about that. The nurses were also very excited about the weight gain. They started cheering and high-fiving Caleb and me and each other. 

His nurses are absolutely phenomenal. They are so kind and so genuinely concerned for his health. They know exactly when to chat him up and when to back off and let him rest. He tried to stay up the whole 3 hours today but that Benadryl hit, his eyes glassed over, he kicked back his chair, and slept hard. He didn't even wake up when the blood pressure cuff started to check his blood pressure. 

During every infusion, his doctor comes by to check on him and his symptoms. She is starting to ween him off the steroids which he is thrilled about. He hates taking them because they start to dissolve and taste "disgusting". In addition to the iron and Prilosec he already takes, she added vitamin D and calcium to his daily pills due to his last blood work. 

His blood work from his last infusion indicated that he has already been exposed to mono and is protected against the chicken pox. Both of those things are great news because of his lowered immune system. Also, he will no longer be able to receive vaccines with a live virus in it. He will still be able to receive the COVID and flu vaccines which is good news since those are such prevalent illnesses. 

His doctor also told us that the pill that he would take first for the capsule endoscopy is on back order and they still don't know when it will be in. We had been waiting for that before scheduling the capsule endoscopy. It is the pill they give him to make sure there are no obstructions that would cause the camera pill to get stuck in his digestive system. They give it to him and if it gets stuck, it eventually dissolves and they know not to try the actual camera pill that wouldn't dissolve. His doctor doesn't want to wait much longer to perform the capsule endoscopy because if the infusions do their job and help the inflammation then she wouldn't be able to tell if his disease is Crohn's or UC. She said the chances of the camera getting stuck and requiring surgery to remove it is very slim. Caleb has not had any symptoms of an obstruction and the CT and MRI he had done didn't show is obstructions. Caleb made the decision to take his chances and go ahead with the capsule endoscopy. I fully support his decision and we should know a schedule for that tomorrow.   

He still hasn't returned to school but is still hopeful he will be able to this week. No matter if he does or doesn't, his home bound teacher is scheduled to come out tomorrow to help him with school work. She is scheduled for 4 hours a week. One day of school is equal to one hour of home bound. So, if he goes to school for one day, she would only need to come out three hours that week. Kaia and Caleb are both familiar with the teacher who took on the responsibility of being his home bound teacher and both say she is super kind and well liked among the kids. That relives much anxiety I had about home bound for him. 

He came home from the infusion and ate some. Then he fell asleep in my bed around 5:30 and has been asleep since. I am worried he won't be able to sleep tonight but I know he must be exhausted and needs sleep. I should probably go to sleep that early myself!

First Infusion

Caleb didn't have much luck with the first week of steroids. He still had all of the symptoms and pain. However, this past weekend was better and yesterday he even said, "If I keep feeling the way I do today, I can go back to school." The kid is very anxious to go back. That was great to hear that he is feeling confident about going back soon.  

When he does go back to school, we have accommodations in place to help him navigate being back. The school and his teachers have been so helpful and we are so grateful for that. 

The two week liquid diet was very hard for him. We added baked potatoes, avocados, and toast to make things a little easier but he still asked questions like "Do we have a drink that taste like steak or FFA ham?" and "Is there something I can just lick to get the taste of but not eat?" 

His doctor was able to move up his first infusion date so he had his first one today. He was given a dose of Benadryl before the infusion and slept almost the entire time. While he was sleeping, I met with the dietitian who gave me some information on a diet for Caleb. He will basically follow the Mediterranean diet which is a lot of fruits, vegetables, whole grains, beans and legumes, and nuts/seeds. It is a lot of foods that I love so I am excited to get that started for the whole family. They are not as excited as I am. Caleb however, focused on the fact he can have red meat about two times a month if it doesn't mess him up. He is a very literal child so his original plan was, "I will just have my steak well done so it isn't red."

He is feeling great since we got home from his infusion so we have hope that this will work for him. Fingers crossed!

Thank you for the continued well wishes and prayers!

Biopsy Results and Treatment Plan

Wednesday, March 15, Kevin, Caleb, and I sat at the kitchen table and joined a Google Meet with the doctor to hear the results from the biopsies and talk about a treatment plan. I had a note pad but was shaking so much that I am really the only one that can probably read the notes I took. And even that is iffy. 

Here is a breakdown of what we found out.

Biopsies

The biopsies confirmed the IBD diagnosis but couldn't differentiate between Crohn's and Ulcerative Colitis. Dr. V wants to do another test to take a better look. 

The Additional Test

The additional test Dr. V wants to perform is a capsule endoscopy. It is actually a really cool freaking procedure. 

First, to make sure Caleb can digest the pill, he will be given a pill that is meant to dissolve in his system. He goes back (the next day I think) to get an x-ray to make sure the pill isn't stuck anywhere in his digestive system. Once it is determined if his system can digest the pill, he is approved for the capsule endoscopy. 

He will swallow a pill that has a tiny camera, a transmitter, and a light. He will wear a recorder on the outside of his body. The camera will travel through his digestive track and take thousands of pictures. It transmits them to the recorder he is wearing for the doctor to view. This will give her a better view of his digestive track and hopefully help her make a better diagnosis. 

Treatment Plan Phase 1

His treatment plan will come in phases. We are already underway for Phase 1. 

He started a cycle of steroids on Thursday. Dr. V hopes is that this will get him feeling better quickly to give him some relief. 

He also started a two week liquid diet on Friday. The idea behind this is to give his digestive system a break from digesting solid foods. I didn't think this would be much of a challenge because we had already cut out so many foods from his diet. Boy, was I wrong! 

The steroids make him super hungry. We all know the insatiable appetite of teenage boys. Now add steroids to that and tell him he can only drink liquids.  Yikes. 

His meals consist of green and regular smoothies, meal replacement shakes that he hates, cream of rice, and apple sauce. After a day, I let him add baked potatoes (great for IBD flare ups) with a very little bit of dairy free butter. He seemed to tolerate that ok, meaning he didn't vomit or have horrible pain, so we added avocados. Depending on who you talk to, avocados can be great or horrible for people with IBD. Since he is eating such a small variety of food right now, it will be easy to figure out if he can tolerate them. 

The first two days were the worst and I still get questions every day like, "Can I have tortillas?" 

Eventually, we will meet with a dietitian from Dell that will give us some ideas on meals that are safe for him. 

The next phase of treatment will begin in 4-5 weeks and is the really scary part for me. 

Treatment Plan Phase II

Phase II involves infusions of a drug called Remicade. The infusions will start with a small does and gradually increase. After he receives his first does, he will have his second dose in two weeks. Then four weeks after the second dose, he will have the third dose. Once he is receiving his full dose, he will have an infusion every 8 weeks. 

Each infusion will take a few hours and because of a risk of allergic reaction, he will also be given Benadryl on infusion days. 

Just like every other drug on the planet, Remicade comes with a long list of warnings and side effects. The drug that is essentially savings his insides will also lower his ability to fight infections. So he will need to be diligent about cleanliness, germs, and avoid big crowds and sick people. 

Depending on how he does will all of the treatments will determine if additional treatment or surgery is needed. Some people go into remission with Remicade and others need to try alternate treatments. Remission is the ultimate goal of course. 

Caleb has been very sad and mad about not being able to eat his favorite foods even before the liquid diet started. But I think he is finally starting to understand the consequences. 

As sad/mad as he is about not eating his favorite foods, the saddest he got is when I had to break the news to him that our summer trip to the Bahamas would have to be postponed. Because we don't know how he will react to treatment and because his immune system will be compromised, we can not risk a plane trip. That is the first time I saw him tear up about this situation. Going to the Bahamas is a dream vacation he has. I assured him that we will go once we get further along in this mess. 

Thank you to everyone who has read his story, reached our, offer prayers, healing vibes, and words of encouragement. It really does help and is very much appreciated. 

They Stole My Underpants!

In total Caleb has missed 25 days of school. It is impossible for him to leave the house. The only place he has been in the past month or so is to the doctor. But, missing that much school does not mean he wanted to spend his spring break getting an upper endoscopy and colonoscopy. I can just imagine Caleb's response if asked to write about his spring break. "I had a camera stuck down my throat and up my butt." If you don't think that is exactly how Caleb would respond, then you don't know Caleb very well. 

I guess this would be a great time for a little disclaimer. I use what some would say is inappropriate or unconventional humor in stressful situations. OK, not just in stressful situations, I use unconventional humor all the time. Kevin is the same way and our children have definitely inherited that trait. I will say, we aren't classless about it. We know our audience and hold back when necessary. I also don't want any readers to think that I am downplaying Caleb's situation by making jokes. This is an extremely serious and dangerous disease but I am also a firm believer in "laughter is the best medicine". When you laugh, your muscles relax and your circulation improves along with a myriad of other things that are good for you. So now that you have been warned, I will continue with the story of endoscopy and colonoscopy day. 

We arrived at Dell at 6 on the morning of March 13 for his tests. We were the first ones there so there was very little waiting in the lobby. When we were called back, Caleb was weighed. He had now lost 25 pounds since January 18. 

He put on the hospital gown and we made stupid corny jokes as we waited. I asked if he was nervous multiple times. Finally he got fed up and said, "I'm not but if you keep asking me then I am going to think I should be." Fair enough. Many different people came in and out of our room with questions, hooking up machines, and a play by play of how the rest of Caleb's morning would go. It didn't seem like very long before they came and got Caleb to walk back to the pre-op room. The nurse glanced down and said, "Oh, honey, you need socks. Why didn't they bring you any socks to wear?" Before Caleb could answer, she was out and back in with a box of those non-slip hospital socks. Then she took a better look at his feet. "Oh, maybe they didn't get you socks because we don't carry any that big in the children's hospital!" She got him a medium anyway and they mostly fit. Caleb wouldn't have said anything if they didn't. As he walked out the door, he grumbled, "I love you, I guess." in the mocking tone he does at home all the time. I answered back in that same mocking tone, "Love you too, I guess."

I texted, played games, and worked on report cards while I waiting. A nurse came back in and told me that he was in recovery and his doctor would be in soon to talk to me. It wasn't long before his doctor came in. I could tell by her face that it wasn't good. She sat next to me and sighed heavily as she told me what they saw in his scopes. Severe inflammation and pools of blood. Colon and intestines are in bad shape. She wanted to get biopsies back before we can discuss a treatment plan. She hoped to have them back on Wednesday so we scheduled a virtual visit for Wednesday afternoon. 

Shortly after the doctor left, Caleb was wheeled back in the room in a hospital bed. The nurse said he should be waking up soon. I got up, walked over, and pushed his hair away from his face. His eyes opened, he looked right at the nurse and then at me and said, "THEY STOLE MY UNDERPANTS!" The nurse and I both busted out laughing and Caleb turned his head away and went right back to sleep. He doesn't remember that. 

After we were home and he slept for most of the day, he asked about the results. 

"What does inflamed mean?" 

"It means your guts are irritated. HaHa! Your guts are irritated!" 

"Haha, your breasts had cancer!" 

And that is that unconventional humor I was talking about earlier. 

The two days we waited to get the biopsy results back seemed like forever. 

Some answers...and then more questions

Caleb had his first appointment with the GI doctor on March 6 at Dell Children's Medical Center. I had already started a food diary and was tracking his weight. At this point he had lost 15 pounds in less than two months and it seemed like all food triggered his symptoms.   

His doctor came in, asked him a million questions, felt around, looked in his mouth, and said, "I think it is Inflammatory Bowel Disease but we need more tests to be sure." I could tell she was very concerned for him. She said we would schedule an upper GI endoscopy and a colonoscopy as soon as possible. She also gave me a list of signs to look for. If I saw any of these signs, I needed to take him to Dell Emergency as soon as possible. These are things we still need to take him to the ER for if they develop. 

She said the blood work from the February 17 ER visit showed he is anemic so he needed to start taking iron. She wanted to run another blood panel to make sure nothing had gotten worse.  We scheduled his endoscopy/colonoscopy for March 13 before we even left and then headed downstairs for blood work. Caleb and I both agreed that we loved this doctor. She was caring yet professionally strong. It was obvious that she knew her shit. (Pun intended!) She would later tell me, she was very close to admitting him to the hospital on that first visit. 

I felt some relief walking out Dell that day and I could tell Caleb did as well. We were starting to make progress and that was good. But the stress and overwhelming concern for my sweet kid comes in waves and I knew we still had a long way to go. I went home that day and immediately starting researching.  

Here are some questions I had or that other people asked me after that first visit. I hope it helps readers with questions they may have.

What is Inflammatory Bowl Disease? 

IBD is a chronic (lifelong) disease of the intestinal tract that causes inflammation. The two main types are Crohn's Disease and Ulcerative Colitis. We do not know which one Caleb has but more test are in his future to determine that. 

Oh, so it is another name for IBS.

No. They both share a few of the same symptoms but are very different. I found this Venn diagram very helpful. 

Isn't he too young to have this?

IBD is mostly diagnosed between the ages of 15-30 but can be diagnosed at any age. 

What caused it?

Nobody really knows what causes IBD. Many people think food does. Some foods may trigger symptoms, especially during a flareup, but a person's diet doesn't causes IBD. 

Are there risks?

People with IBD can develop complications that require emergency care and hospitalizations. IBD can also affect the eyes, joints, mouth, skin, bones, liver, and kidneys. There is also a higher risk for developing colon cancer, blood clots, and liver disease. 

Is there a treatment?

IBD is lifelong and there is no cure. However, with treatments, Caleb will hopefully go into remission and we will be able to manage his disease better. I will post what we have learned about his treatment plan in a later post. 

If you have any questions, please do not hesitate to ask. I really don't mind answering questions at all. 

Thanks for reading and thank you all for being so supportive. 

How we got here...

It started with periodic stomach aches and bathroom issues at the beginning of December. Caleb isn't a kid who fakes sickness to avoid school and by mid-December, he was missing more than one day a week and when he was there, he was texting all day asking to be picked up. We asked continuously if something was going on at school to make him want to avoid school. He assured us there wasn't. We asked Kaia to talk to him. If he was having issues with someone at school, she would be the one he would tell. Kaia got the same answers from him that we did. So we scheduled an appointment with his pediatrician. 

The appointment was scheduled for the end of December and the day before the appointment, the pediatrician's office called to change the appointment to a virtual appointment. We called in and Caleb did an amazing job talking to the doctor and giving him all of the information he needed. The doctor prescribed him IBS meds that didn't help (IBS is not the same as IBD, but more on that will come in a later post) and said he wanted to schedule a diagnostic ultrasound of Caleb's belly. 

We got the appointment scheduled the following week, the first week in January. But then, there were some insurance changes that weren't processed correctly and the appointment had to be postponed. Once the insurance situation was cleared, he had the ultrasound done on February 2.  After waiting about a week for results, we were told they saw a questionable spot on his liver and his doctor wanted an MRI for a better look. We scheduled the MRI for February 22. More waiting. Meanwhile, his symptoms were getting worse. 

He had already missed SEVERAL days of school and as parent and teacher, I was concerned about him falling behind. He had worked too hard to let absences bring his grades down. I knew he was missing important instructional time and equally important social interaction with his friends. He missed Monday through Thursday the week of February 13. But, Friday, February 17, he attempted to go to school. The long bus ride from our house to the middle school aggravated his symptoms so he asked to ride with me. He rode with me to the elementary and caught the bus from there. Before he got on the bus he begged me not to make him go. I had never seen him like that and my gut told me not to put him on the bus. I did anyway. Always trust your gut. 

He texted during the short bus ride to the middle school from the elementary and when he arrived at school, begging me to pick him up. He was in a lot of pain and completely miserable. I made the decision to leave school and take him to the emergency room. I have an amazing partner teacher who said, "I'll take your class with my class, go!" I have amazing admin that said, "We will figure it out, go." I have an amazing 3rd grade team that split my class when no sub could be found. 

When we got to the ER (shout out to the amazing staff at Ally Bastrop) Caleb was checked in and I realized he had lost about 12 lbs since an unrelated doctor's visit less than a month before. During the intake process, the very funny and personable staff member asked, "Is he always this white?" No, his color was def off. Some of his blood work was off as well but they weren't concerned. They did a CT and it showed nothing significant. They gave him some fluids and his color did get better. The doctor suggested we keep his MRI appointment scheduled the following week and see a pediatric gastroenterologist. 

The MRI the following week didn't show anything significant on his liver. His pediatrician said it was probably a blip of some sort during the ultrasound. That was much needed good news but still didn't give us answers to his growing list of symptoms which now included blackish stool and vomiting every couple of days. 

Getting in to see a gastroenterologist proved to be a struggle. It was a race between Dell Children's and Baylor Scott and White to see who could get him in the fastest. Well, they didn't know they were in a race. It was just a race in my head. Both originally said it would be the end of April before they could see him. But after Dell received his records and I called to give them his growing list of symptoms, they scheduled him for March 6. Not as soon as we wanted but better than the end of April. 

My next post (maybe tomorrow) will be about that first gastro appointment and appointments we have had since then, as well as his treatment plan. 

I want to thank everyone for the continued concern for Caleb and our family. ❤