We tried to beat the ice storm on Tuesday. After I got off work at 7 pm, we drove the 2 hours down to Iowa City and got a hotel. Thank goodness we did (thanks for the suggestion mom) because the ice was THICK and many of the school districts were closed because of it.
Gannon’s appointment yesterday was okay. We don’t “love” our GI doctor.
I was hoping for “the answer” which wasn’t fair. That’s not reasonable to expect right now.
University of Iowa has done what they can. I had the conversation with our GI doctor. I said I don’t feel like we’ve been taken seriously. She got defensive and said “Well I’ve referred you to urology and surgery and more imaging isn’t helpful right now.” Which is true.
I expected the University of Iowa to be somewhere we could be officially diagnosed but they don’t have a motility clinic and they are also limited. All they can do is refer us on.
Gannon’s past two weeks have been complicated by an upper respiratory virus and possibly a stomach bug. It’s hard to say what is causing his vomiting. Maybe it’s related to his belly, maybe it is something different entirely, maybes it’s also related to a virus. All I know is Gannnon does better on formula than with real food. She dismissed that and told us to feed him whatever.
I asked how we can relieve his distention now. She said there isn’t much we can do. That’s when I asked about a G tube or a J tube (a surgically placed tube that goes directly into the bowels or stomach to relieve air and possibly deliver feedings). She said in her experience it doesn’t make much of a difference in kids like this. I have a feeling the motility clinic will say differently but again, we aren’t at the motility clinic.
That’s when I told her that his distention is a concern I need addressed before we leave today. She offered a rectal catheter but she said “I don’t think this will work or make much of a difference.”
The catheter is inserted into the rectum. It has perforations in the tubing to let gas out. Within five minutes, the room smelled like gas and Gannon had a noticeable decrease in his abdominal distention.
Our GI doctor said that the rectal catheter works well with treating Hershprungs kiddos and because it is working well for Gannon that leads her to believe this could be the chronic intestinal pseudo obstruction (CIPO). His distended bladder is also a sign of CIPO. Also his redundant or “extra” colon is also a sign of CIPO.
Just a refresher – they have tested Gannon over and over again for Hershprungs disease. That would mean there are NO nerves in the bowels/colon. That was what we were admitted for at St Marys. A biopsy ruled that out. CIPO is when the nerves or the bowel/colon don’t work. Manometry can test for that.
She also noted his liver is larger than normal on the X-ray. I’m typing this as we are waiting for an ultrasound of his liver. She said maybe this could be contributing to his distention.
I asked about genetic testing. She said the motility clinic would be able to tell us if that is a good option for Gannon.
We are planning on also doing an EGD (upper scope – like a colonoscopy only looking at his esophagus and stomach) when he has his testicle surgery in February. This will look at his upper GI tract and test for abnormalities. They may take a few biopsies then too.
Craig came with to this appointment which was so great. I like to have a second set of ears and I feel more confident being a stronger advocate for Gannon when I have someone with me.
I may come off as “fierce” or “strong” but when it came time to actually stand up to his GI doctor and say “I feel like we aren’t being taken seriously” it came out as “I just don’t know. I just….I don’t know…I feel like maybe we should be doing more….I don’t know.”
It’s hard. I don’t know as much as her. I really don’t. But I know Gannon. And I know this isn’t normal.
And I know what I’ve been reading on my CIPO support group. They are all an expert on this condition. They know the questions to ask and what helps and what doesn’t. They give me the courage to advocate.
I’m finishing this post as we are on our way home. The ultrasound took FOREVER. They kept coming back to his liver over and over again. Then someone else came in and took more pictures. It honestly took about an hour.
Gannon was so so so good considering how long it took! The lights on the ceiling helped too.
Milawakee is reviewing his case on Tuesday. I’ve been emailing Carly at the GI Access center there. She’s working on getting prior authorization from insurance and accepting the referral as well. She is one of those “behind the scenes” who holds a department together and I can tell she knows her stuff!
It’s a guessing game as to how long it will take to get into Milwaukee. Gannon’s doctor said she’s referred patients to Nationwide in Columbus Ohio and it’s taken 4 months to actually get in and be scheduled. Columbus’s motility program is also highly recommended but that’s about 10 hours from us vs. just 4 hours. Mayo (where we started this whole mess) is only 1.5 hours away but we weren’t impressed with them and they can’t do the full tract manometry that Gannon needs. So Milwaukee it is.
That’s all I know for now. Thanks for your well wishes. Gannon appreciates it too!
P.S. Gannon has always had “floaters” or “debris” in his bladder along with a distended bladder. The MD who finished up Gannon’s ultrasound noted that again today and showed them to us. Usually it is indicative of an infection but Gannon has never had one. Of course that never made it on the ultrasound report. All that was noted on the ultrasound of his organs was a “mildly prominent lover and spleen.” Whatever that means.
I said Gannon was doing better. He was doing much better. He went a whole 24 hours without throwing up last Thursday. But, Gannon is not better.
I want to preface this blog post with this: I know Gannon isn’t okay. We are working closely with his GI team. This include referring him on to a much more specialized care team. I know I need another opinion. We are working to get one. These things take time. I’m trying so hard to be patient.
Gannon has tummy troubles. If you are new to the blog, you can catch up on Gannon’s roller coaster here:
And last Thursday’s ER visit:
These will bring you up to speed.
Gannon began vomiting on December 29th. He would throw up at least once a day – sometimes up to three times a day. He had his ER visit, the next Monday he was STILL vomiting. We took him back to the doctor, blood work showed things were improving but now his belly was so big and distended.
Our primary doctor (who we LOVE) said he had an ileus which means a part of his bowel is so big and stretched out and full of air that it isn’t moving food through properly. There isn’t much to do about it but wait for it to pass. He was not “obstructed” but very slow moving.
This is the tube Gannon is set in for his xrays. He used to fight and scream but he’s pretty used to it by now. He’s looking at me like “really mom?” An xray confirmed that yes it is an ileus.
He still continued to vomit on and off through the week. He was eating table food SO WELL before he got sick. Now he sometimes couldn’t even keep formula down and we would give him apple juice or pedialyte for the rest of the day to rest his bowel.
Then last Saturday Gannon threw up again and his belly was even more distended. We sent Carver and Gannon to Grandma and Grandpa Debbie’s for the weekend. Gannon did pretty good there.
On a side note, Craig and I are planning AT LEAST one night a month where he goes to hang out with his buddies and I hang out with my girl friends. That was this weekend which was super fun! I think time apart is equally as important as time together!
Gannon came home on Sunday with a big huge belly. I was worried sick about him. I gave him his nightly miralax and sent him to bed. He was a bit wheezy (which isn’t uncommon) so we gave him a breathing treatment. Monday morning came and his belly looked like this:
I called his GI doctor and I told them I needed him to be seen. They are fitting us in today (as you’re reading this) we are on our way to the University of Iowa. Her and I have been emailing back and forth – she recommended being seen locally and getting an abdominal xray so we did. My amazing sister Kelli went to my mom’s house, picked up Gannon, and took him to the doctor.
When someone needs to poop, it is obvious on xray. The treatment for that is simple: POOP. Gannon’s bowels are full of air. FULL of air. The treatment for that is not so simple. I gave him an extra dose of miralax AND a glycerin suppository. It is very obvious Gannon doesn’t have any poop left to poop and yet this is his belly yesterday morning:
I chatted with his GI doctor this morning and she said we can hold off on any more stimulants until he is seen. It’s clear this is gas deep in his bowel and not an easy fix.
They told us to pack an overnight bag just in case. I’ll update what I know when I know it.
Gannon is really uncomfortable when he lays flat. He’s got a cold going on right now too. He’s very clingy and fussy. Other than that I don’t think he is much pain.
Next steps include a referral to Children’s of Milwaukee. It’s about 4-5 hours away. He needs something called manometry which measures the peristalsis (or the waves) in his intestines throughout his GI tract. They have an incredible motility center. I’m not sure how long the referral will take but I started the process yesterday.
We will also be requesting a nutritionist/dietician referral to see how and when it is safe to advance Gannon’s diet again. We also think he needs a referral to genetics to see if they have any insights to offer.
If Gannon has what I think he has, chronic intestinal pseudo obstruction disorder, we’ve got a long road ahead of us. He would be 9 of one million kiddos. We already know he is one in a million to us!
I’ve joined a support group on Facebook for this condition which has been so helpful and encouraging. I want to make sure I’m giving Gannon the best care in the country – even if that means driving hours on end. The people in the group are experts and have been so insightful.
We didn’t think much of it. Sometimes he finds a little piece of fuzz on the floor before we can catch him and he puts it in his mouth and it gags him enough so he throws up.
Mom messaged me while I was at work on Monday. Gannon threw up again. She had to change the sheets and his outfit. No fever, he was acting normal but mom wanted to let me know.
On Tuesday Gannon threw up twice. Now this was getting kind of weird. He had some respiratory junk and a cough so maybe that had something to do with it. No one else in the house was sick. He would act totally normal in between throwing up.
When Craig and I went out to eat on NYE he threw up all over himself at my mom’s house. When we got him home he threw up again.
I went to work on Thursday but I cautioned Craig to keep him hydrated and clear liquids through the night. Not to mention he hadn’t had a bowel movement in a few days either.
All night at work I just worried about him. I ran through every scenario in my mind and remembered all of his issues from when he was hospitalized and was convinced he had some kind of bowel obstruction.
I ended up calling down to the University of Iowa and spoke with a specialist on call from Gannon’s GI team. They told me to take him to the ER right away and that he needed fluids.
I brushed it off. No, he doesn’t need IV fluids. He’ll be fine. He looked fine when I left. He was still having wet diapers. He was still crying tears. That gastroenterologist didn’t know what they are talking about.
I ended up clocking out a little early after working 12 hour overnight shift so I could go home and see him and assess him.
I got home and Gannon was LETHARGIC like I’d never seen him before. In the 15 minutes I got home he had already thrown up. His eyes were open but he was limp. He looked miserable.
I didn’t even hesitate – I knew something wasn’t right. I took him right back to the ER. I was so confused though, he was acting dehydrated but he still was having wet diapers. I didn’t even know what could possibly be wrong.
I called my mom on the way there and she said, “Kalissa. You don’t have to have him diagnosed. You just have to bring him. Let them do their job.” I hate not knowing. I hate when the pieces don’t fit. I usually have some kind of inkling of what is wrong before I bring the kids in but with Gannon, I had nothing.
Gannon hardly flinched when they started the IV. He just melted into me. He slept, he slept hard, in between assessments and medications and tests.
After while they came in and switched his fluids over. They said his blood sugar was 50. Normal is usually 70 – 110. That’s pretty low.
Before I could even think “Oh my gosh does he have diabetes??” Fell out of my mouth. Which wouldn’t make any sense at all. When diabetics get sick their blood sugar goes UP not down.
But when I’m the one with the sick kid, I can’t think straight. It’s truly incredible how much my nursing instinct completely leaves me when it is my kid who is sick. I’ll call my mom and ask her what I should do for a fever or ask for medical advice. She finds that hilarious considering I’m an ER nurse.
Hour by hour he slowly started perking up. We were very close to being admitted for continuous fluids. His cough started getting worse and worse but he was perking up.
He ended up waking up enough to get discharged. He did throw up again at home that day and the next day. My mom was so sweet she let me sleep at her house with the boys.
I actually just got off the phone with mom and she said he just threw up twice again. UGH! Back to the doctor tomorrow morning. That will be 8 days in a row of vomiting!
I feel like those 129 days were awful. Everything progressed so quickly. We asked lots of questions to see if we may have missed something. Were the steroids that made him feel good actually bad for him? Did his surgery shake his tumor and spread the cancer everywhere? How long had the tumor been there? Have you ever seen cancer spread to the C2 like that? On and on, after about 45 minutes of tears and laughter, we got the closure we needed. By the end of the conversation, they asked us to be a part of Gundersen’s “Shine a Light” program.
Of course we agreed. We wanted to help spread awareness about lung cancer and screening for lung cancer.
Dad’s lung cancer was found on a “routine” CT scan to screen for lung cancer. Dad had been “slowing down” for a few months but we all just figured it was worsening COPD. By Christmas time, Mom had talked to him and was really concerned about his breathing and wanted him to ask his doctor for a CT scan of his chest.
He finally got up the nerve and asked his doctor for the CT scan. Dad qualified for the scan because he was over 55 years of age and had an 80 pack year history of smoking. Here is the criteria for screening for lung cancer from GO2 Foundation for Lung Cancer: https://go2foundation.org/
He got the CT scan where they found stage 3b lung cancer in his right lower lobe. It was a big tumor. In hindsight, this screening should have been offered to him when he turned 55. All patients who meet the criteria should be screened for lung cancer. It should be as normal as getting a mammogram or a colonoscopy. More specifically, we need to be focusing on patients who are high risk for lung cancer.
Existing High-Risk Criteria
You are between the ages of 55 – 80
You have a 30 pack-year smoking history
You are a current smoker or quit within the last 15 years
Across the country, Shine a Light events are being held in November for Lung Cancer awareness month to increase awareness, celebrate those who have passed, those who are being treated for lung cancer, and screening for those not yet diagnosed. Dad’s cancer team will also be attending the event.
And you guys I am so jazzed, they asked me to speak at the ceremony! They also said mom and I could give a speech together but Mom is letting me take the reigns.
I’ve got about a 5 minute time frame to come up with a speech about Dad, cancer, screening, lung cancer, WHATEVER I want to talk about!
If you’re in the area and want to attend, here are the details:
My mom was diagnosed with thyroid cancer in 2016. And yes, you are remembering correctly. My dad passed away from lung cancer this past June as well. More on that in another post.
Back to mom: A routine checkup with her new nurse practitioner detected a lump or a nodule on her thyroid. An ultrasound and needle biopsy (yes that it several giant needles into her neck to get a sample of the tissue while she’s awake) came back “inconclusive.” Not positive or negative, inconclusive. In other words, it might be cancer.
Mom had a choice: remove the entire thyroid, remove half of the thyroid where the nodule is, or monitor it. She opted to have the thyroid removed.
Surgery was minor. She recovered well. A few days later, the pathologist determined it WAS cancer and that it had just begun to grow into the blood supply to her thyroid making it Stage 3 Thyroid cancer. She was 50 years old then. And to think she had the choice if she wanted to remove it or not. We are so glad she did.
So mom has no thyroid. She does not want ANY thyroid tissue to grow back. Therefore she was prescribed A HIGH dose of Levothyroxine.
Levothyroxine is a pill that tricks her brain. It tells her brain to stop making any thyroid tissue. It says “Nah, we are good! We got this! Don’t stimulate the thyroid!” Which would in turn grow thyroid cancer cells. So during her recovery mom felt “normal” because her Levothyroxine was replacing the hormones her thyroid used to send.
Her surgery was in February and her cancer treatment/radioactive iodine was in April after her recovery. Mom had to STOP taking her Levothyroxine. For about 3 weeks mom lived without any thyroid hormones. It was hell.
Mom describes the symptoms she had when she was completely without any thryoid hormones as being “dry.” Every part of her body ached, every joint squeaked, her mouth and eyes and nose was so dry, she felt constantly dehydrated and constipated. Depression set in. Mom cried a lot. She felt so foggy and dizzy and whoozy and AWFUL. It was SO hard for us to see her like that. And then there’s the diet…
I’m trying to explain this the best way I can: Any cancer cells in her body needed to be completely starved of ANY iodine. That way, when mom takes the radioactive iodine, any thyroid cells or cancer cells are SO desperate for iodine they EAT the radioactive iodine when she takes the radioactive iodine pills.
That means she had to be on her very strict diet on top of having NO thyroid hormones (read more about that here: http://www.joscountryjunction.com/the-diet/ ) AND she had to be completely off of her thryoid replacement medicine.
Mom eventually took the radioactive iodine and was able to restart her hormones. Mom’s blood test, thyroglobulin tumor marker (let’s call it her TTM because that’s too long of a word to type, indicated the thyroid cancer had been TOTALLY irradicated as of October 14th, 2016. That means her TTM was 0.00 about 10 months after diagnosis.
Can you believe that is CARVER she is holding?!
Here’s a picture I snapped the day we got the good news:
In the meantime mom had had blood draws every 6 months to monitor her thyroid cancer. Her TTM began creeping up about a year after she took the radioactive iodine.
At first it was just minor – detectable at 0.04 or something. But it began doubling every 6 months. They kept telling us not to worry too much about it, we aren’t worried about a reoccurrence until it is above 5 or 6. At level 10 there is a reoccurrence somewhere. Every 6 months mom would go on her iodine free diet, get the full body scan, PET scan, get a chest CT scan, get the shots, get her blood drawn and usually get some kind of biopsy.
Over and over again mom’s scans came back clean and the biopsies came back negative. We played the “wait and see game” watching her TTM numbers double until they were 6.2 last April.
NONE of the scans showed anything. They have been watching the cancer grow and her numbers rise but they can’t find where it is in her body. About a month ago, moms number had gone from 6.2 in April to 17 in September. Mom had her blood redrawn on Monday and it was 26.
Her TTM number went up 9 points in less than a month. The cancer is back and we have to find it before we can treat it. We have to find it and surgically remove it before we can give her the radioactive iodine to give the best chance at fighting the cancer.
Which brings us to today: Friday. October 18th. Mom will be getting ready for Lacrosse as you read this. She has her scan in the morning, then she is going to EAT real food, and results in the afternoon.
We hope they find the cancer.
We hope it can be surgically removed as much as it can be.
We hope for strength to get us through whatever the results say.
I say we, because mom’s fight is our fight. In this family no one fights alone. We are #KramerStrong
If you have a Kramer strong t-shirt – wear it today! I’d love to see it and I know mom would appreciate the cyber support! <3
P.S. Just reading back through this it doesn’t seem to do justice to all that mom has been through in the past 3 years. This is a very condensed version. This doesn’t include all of the tears, the wondering, the questioning, the fear, every needle, medication, poke and prod.
“I’ll paint the kitchen neon, I’ll brighten up the sky I know I’ll never get it, there’s not a day that I won’t try”
– Soon You’ll Get Better by Taylor Swift ft. The Dixie Chicks
She wrote this beautiful heart wrenching song about her own mother’s battle with breast cancer and it really hits a nerve. Get your tissues guys.