Tough liam

10/09/2026

A quick update on Mr. Liam, he has more and more issues with his Ileostomy the most recent surgery was a mesh placement, which was supposed to stop the prolapse, 11 days after surgery the side of his stoma developed a hole on the skin where a new prolapse has started. This journey has been unbelievable.

Since his last increase on his seizure medication he hasn’t had any real big seizures only short ones, we will at some point need to go back to Nationwide Children’s for inpatient EEG.

Liam is still taking his oral chemo and has an upcoming MRI November 3rd to check on growth on four areas, Brain, Chest ( pesky Bob) , side, and the new spot found at last MRI, in between the heart and rib. Visually we can tell pesky Bob and the side is bigger. But he’s had so much other stuff going on he’s not been able to be on full dose of his Oral Chemo.

He is currently wearing a heart monitor to see if his tachycardia is constant or random throughout the day or linked to him seeing black spots. The cardiologist he seen made us feel like we should have never been to clinic like it was normal for him to have tachycardia, which it isn’t, then she told us to dilute his feeds with water, hmm no we can’t do that he needs all the full calories not diluted, then she said give him more salt. So we left that clinic feeling very frustrated.

We have been waiting to get into Urology for his urodynamic testing however it keeps getting pushed back 6 weeks every time he has surgery.

The other day he wanted to go take pictures for Santa so Santa knows what he wants.😁

09/26/2026

https://gofund.me/6024f2e69

For Liam and family Dorothy is starting this fundraiser for her gran… Dorothy Kesler Cullum needs your support for Support Liam Through Medical Obstacles

09/24/2026

Liam of out of surgery and back in his room. The surgery took 3 hours and recovery room 45 minutes. We are back in his room and he is resting. His surgeon said he was able to resect what needed to be done, took the extra tissue that was around the stoma, took a small piece of the small intestine and put in a mesh holder kinda like a hammock and showed the intestines to that do the risk of prolapse is very minimal. He does have three small incisions where the mesh was fed through. Praying this works for him. Every 29-31 days since July 15 he has had surgery.
His body needs a break.

https://gofund.me/299fa2b07

09/23/2026

Liam’s surgery stated about 10 minutes ago and it is suppose to take two hours hopefully he will
start feeling better real soon. We will update after surgery. You can tell by the picture he’s completely over waiting.

https://gofund.me/bfd6f8a1d

09/22/2026

Tomorrow at some point Liam
Will be having surgery to “tack his stoma in place “ essentially they will take small pieces of mesh and attach his stoma to it and then the mesh will
be like a glue and staple to hold it in place.
When the surgeon came in to see him the prolapse was back and he couldn’t get it pushed back in. Hopefully this will fix this issue. Because three surgeries in two months on the same spot is hard. He has cranky for weeks and behaviors are not like him even on his worse days He had a really cool visit from one of the Colts Football players. He was given a signed football and picture. They talked about how tall he was and how he tackled people.

09/22/2026

Please share.

For Liam and family Dorothy is starting this fundraiser for her gran… Dorothy Kesler Cullum needs your support for Support Liam Through Medical Obstacles

09/22/2026

Update: Liam is being admitted to the surgery floor and his original surgeon that did his first surgery will come in to see him tomorrow and decide whether to send us home or what the next plan is.

Here we are again!! I’m so sad and angry for this boy, He has been through hell and back for a long time especially since July 15th. Called the surgery clinic after he got home from school and we were told if his stoma pr*****ed again to come to the ER. It pr*****ed to 7 in. We have been able to get it back where it needs to be but within hours it’s pr*****ed again.
Since July 15th he has had 2 surgeries one was emergency, a total of 15 days inpatient , 5 emergency room visits two of those were by ambulance from school for seizures, increase of medication, a bad reaction to the wax ring on one of the Ostomy bags, and two prolapses.
He has had a total of 5 prolapses since yesterday .
Waiting on a doctor to come in and figure out what to do.

09/11/2026

Back at the ER! Liam had a significant prolapse with his stoma. They have got it back in some, we we were told it is normal and it looks healthy. However every time he moves it comes out more then goes back in. This boy has been through so much since June. Waiting on doctors to make decisions on what they want to do. I’m saying let us go home( if it’s normal) and we will get use to it coming in and out. Also, he has an appointment with the Stoma clinic Tuesday. 

09/11/2026

We are home and Liam is sleeping. The ER doctors phone consulted the Neurology doctor at Riley who increased one of Liam’s seizure medications, which means he is completely maxed out on all 3 medications, they also said they would come down to the ER to see us but it wouldn’t do any good because it wouldn’t change their course of treatment, and we needed to get a hold of his Neurologist at Nationwide Children’s.
I had already sent and left a voice message to them so hopefully we will hear from them tomorrow.

09/10/2026

This kid needs to catch a break. Back at the Emergancy Room, Liam came by ambulance from school. 10 minute long seizure that his emergency meds were given.