Korbin's Neuroblastoma Journey

06/22/2023

03/19/2023

His appetite has been great and he's moving around just fine. After meeting all of his requirements we're on our way home! His incision is still tender so pain medicine, rest and blowing bubbles to help with his lung function at home.

Pathology report on the tumor showed it contained mature cells. Which means it was there during the first diagnosis and is of no danger to him. No additional chemo will be needed. They also did an EKG to make sure his heart is healthy because of the breath holding spells. It's official, he's just a stubborn pain in the butt🥴

Thank you all for the well wishes 💛🎗💜

03/17/2023

We've been more cooperative today. Not moving too much but he's on minimal pain meds. Appetite is coming back. Napping on and off today with a wagon ride in between, then hopefully we can try to take a walk this evening. No more blue face incidents.

03/17/2023

It was a long eventful day today. They took his breathing tube out and he was fine for a bit. Then he rolled and threw a toddler tantrum so bad that he desat to a 1 on his oxygen, lips turned blue and he passed out. All of the PICU staff ran into his room to assist because it caused him to code. After the 3rd tantrum they figured out it was just him holding his breath because he wasn't getting what he wanted. He did that about 6 times today.

Once they unhooked a lot of his lines he's been much happier. He finally got something to eat and is currently watching Bluey while resting. His pain management has been great, oxy only as needed and no epidural since 5. Not sure when we will get out, but if he keeps behaving we shouldn't be here too much longer.

03/15/2023

Surgery went well. The tumor was the size of a marble and not attached to anything and they sent it for testing. He was done in about 3 hours. His body was not liking anesthesia today. They had to reintubate and sedate him after his oxygen dipped a couple times. He will stay this way until morning then we will attempt to take it off. We will probably be here a minimum of 5 days. Will update more tomorrow.

03/15/2023

The doctors took him back for surgery about 9:10. Still prepping, but should be starting soon. We are looking at roughly 3 1/2 hours. They will be going through his abdomen, not laparoscopic, due to the scar tissue from his previous surgery.

Cydney from Child Life was great with him this morning. We've never had a bad experience with Child Life, but she has definitely been the most interactive.

02/21/2023

Well we had scans back in January. There were a lot of discussions between doctors, surgeons and ourselves in the past month. What we thought was regrowth on the original tumor site is actually a completely new tumor. It's hard to say if it's an old tumor from before chemo, a new cancerous tumor or a benign mass. We have opted for surgery to remove it. They were okay with waiting and watching but we are not comfortable with the thought of it possibly spreading. Once it is removed they will send it off to see if more chemo is needed. Hoping for a laparoscopic removal this time to reduce trauma within the abdomen and give him a speedy recovery. The tumor is located near his spine behind the kidney that had the original tumor. It is near his ureters. It's scary to think about all of the things that could go wrong but we have alot of faith in Korbin's surgeon. Surgery is set for March 15.

12/21/2022

Last Tuesday 12/20/22 Korbin went for a 6 month MRI check up. He did so good with getting blood taken (they blew out one vein) that he got two prizes. He woke up from anesthesia better than any other time in the past. It was a very mellow day at the hospital.

Then we got the call the next day that his MRI showed growth where the original tumor was. After speaking with his oncologist we have made the decision to do MIBG and CAT scans. As long as there is no growth anywhere else we will then meet with the surgeon to discuss removing his kidney. All of his tests came back great other than the tumor growth so we are very hopeful this will be the end of it.

05/05/2022

Checked in for an MRI at 11:20 this morning. He did great with them placing his iv, no tears and came out of anesthesia fairly well. He was rather hangry when he woke up.
MRI showed decrease in size on the internal hematoma, healing tissue on the internal surgical site and no cyst-like objects were identified like they had been previously. Normal bone marrow readings and no swollen lymph nodes. We are now down to MRIs every 6 months, but will still meet with the oncologist and have a urinalysis in 3 months. Echocardiogram every 5 years as a preventative measure due to one of the chemos he took.