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Collin "The Collinator"’s Story

Welcome to Collin's CaringBridge websight! He is 9 years old, and was diagnosed in May of 2008 with pre-b cell Acute Lymphocytic Leukemia(ALL). After one month of treatment at the University of North Carolina in Chapel Hill he went into remission. He completed his original protocol on July 16th, 2011 and on August 2, 2011 he relapsed into his central nervous system, he has spent the last 5+ yrs of his life battling leukemia and went off treatment for the 2nd time on Sept 18, 2013 and this time it's for REALS!!!

In 2010 his bro Patrick was diagnosed with stage 2 hepatoblastoma and is in remission.

So many people ask me what made me think anything was wrong. But as a mother you just know when something isn't right with your child! I always tell people that my kids mouths smell different when they are getting sick. Aside from mothers intuition there are a lot of things when I think about it hard enough...he had ear infections that just weren't going away even with the all powerful Rocefin (which he is now allergic to he has had so much of the stuff)! He was covered in bruises to the point that people thought I was abusing him! He got tons of strange nose bleeds, not gushers, but I would just look at him and there would always be blood around his nose and in his mouth. He was always sleeping, I mean he fell asleep in the front yard on one of the 4-wheelers as I did my gardening! I tried many times to get him seen by a doctor, but the advice nurses never saw any real need for him to be seen. On mothers day I took the kids to a fishing event here locally and he spent the entire time whining for me to hold him, as he did the majority of most days! That next Monday he woke up with a nasty blood blister on his lip, that went all the way into his gums. I had had enough! I demanded that he be seen that day, and as luck would have it someone finally listened to me. We saw Dr. Trebb that day and he agreed that something was not right, and actually tested him for hemophilia. But the results came back and he called me back in for more blood work! This was a little disturbing, but I returned to womack for more blood work as he requested. I just wanted to know what was happening with my little buddy! About 45 minutes later the doctor called me, he wanted directions to my house because he really needed to talk to me in person and he didn't want me driving after the news he was about to give me! I was extremely alarmed at this concept and asked the neighbors to keep the kids while I talked to the Dr. Well my worst fears were realized as I sat on my front porch. LEUKEMIA! I don't know how I knew that is what it was, maybe I watched too much ER as a kid, or some kind of special on tv growing up, but I knew deep down in my heart that is what it was. In fact I had even asked my friend a few weeks earlier "what if this is Leukemia or something awful" I asked the Doc right there, is he going to die? He didn't answer me, instead rambled off the possibilities of what kind of leukemia it was. He then handed me the phone and proceeded to have me speak to the Oncologists at UNC Chapel Hill.

We left an hr later on our journey! They had a really hard time getting a line in him, just as they struggled in Womack to get blood from him. They must have stuck him ten or fifteen times before they got a line in! It was horrible to hold him down like that for so long. He just kept screaming for me to let him go. And the way he looked at me, it is something I will never forget. The first few days were like a dream, it felt like an out of body experience! They gave him blood and platelets. Doctors and nurses were in and out of the room, bombarding me with information. I slept in his bed to be close to him, I don't think I left the room for a week. It was my new home. I didn't have a cell phone either so I relied on people to call me to get information out. Now, nearly two years later, he remains in remission. And the fear is still fresh in my mind, and I worry about it during the nights when all is quiet with the kids asleep, that dreaded word RELAPSE

UPDATE: Collin was having a rough go of things the summer of 2011 but was nearing the end of treatment. He had his last routine spinal tap in June 2011 and after a week I hadn't gotten the usual email from Dr. Gold saying that all was clear. The following Monday after the tap he called in the morning to tell me that there were some Leukemia cells in his spinal fluid. There was only a few and it wasn't enough to classify it as a relapse so they would repeat it again in a month and see what happened. I was horrified to think that my little bug could be relapsing. After a stressful wait we finally came up on his next diagnostic spinal tap, July 2011, less than 1 cell, which sounded the all clear, but Dr. Gold wanted to be safe and do another diagnostic spinal tap in another month to verify that he wasn't relapsing, since he had gotten chemo the month before and that could be masking things. He took his last dose of oral chemo on July 16, 2011 and we celebrated, He even did a little booty shake for me on video. Then a month later, he had the spinal tap again, only this time the phone call came at 8am the next day, 12 cells, he had relapsed. So here we are today, a yr and a half into the next protocol, just 7 months left of treatment. There is light at the end of the tunnel...but as always the fear is fresh in my mind, and I worry constantly.
Update: Collin completed his second protocol which lasted 2 yrs. He finished chemo on 9/18/13
Update: Collin was hallucinating which prompted me to take him to the emergency room on 9/30/14. He was transferred to UNC where they performed a MRI on 10/1/14 on which they found he had suffered a bleed in his right frontal lobe. He is currently being monitored for future bleeds and issues related to this bleed. Thankfully the hallucinations have subsided, but his behavior has been sporadic and unpredictable. The bleed has appeared to have somewhat altered his impulse control.

Latest Journal Update

2 yrs off chemo

Hey folks. So Sept 18 marks the 2 yr mark of being off chemo. Seems like the further out we get the harder things get. Collin had a lot of appts today. Swallow study was first, it went great, he was surprisingly cooperative for that, possibly bc he thought he was going to starve to death before lunch and was willing to down the barium laced applesauce, Graham crackers and drinks theh gave him. Patrick got to watch the swallow study as well and thought it looked really cool on the X-ray lol. With that looking good we went to ENT, where the doc decided that his swallowing issues were likely related to his ginormous tonsils, which had gotten even bigger in the last doc wants to take them out. Let ya know about that date as soon as I know ;) then we were off to see endocrinology, he hasn't been growing much so they did blood work last month that indicated that his pituitary function might be dropping. So the endocrinologist says that he qualifies for the growth hormone therapy, but that she does not recommend it and would have a hard time convincing herself to prescribe it given his history and the risks. Those risks are secondary cancers, relapse and stroke. I was relieved that she wasn't pushing the issue and was pretty much on my side. We repeat blood work with them in 6 months, they also did a bone age X-ray of the growth plates in his hand because the chemo he received can essentially stop growth for a time, which would show in his growth plates if he appeared by imaging to have the bones of a 6-7 yr old despite being 9. When we go back to them, if his growth hormones are lower of worse, then we will discuss a stimulation test to see if his pituitary gland is in fact not functioning properly. So that's in six months. Surgery sometime in the near future to get the tonsils out. Blood work looked good cancer wise. They want us to see a new GI doc for a fresh look at the situation with Collin's not knowing when he needs to or has had a bowel movement. Also need to get the ball rolling with neurology again, bc there's a lot of questions about his behavior and impulse control that need to at least be addressed. And then follow up again with oncology in a month and that's about it. Sorry. I'm exhausted...need sleep.
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Joyce Nosker
By Joyce Nosker
Praying for all of Collin's issues and for the upcoming tonsillectomy. Please let us know how he does with the surgery.
Sandy Daron
By Sandy
I am soo glad Collin and Patrick are doing well.

Love ya,
C.O.L.E.s Foundation (Caring Openly, Loving Eternally)
Say A Prayer, Send A Smile, Make A Difference
Diane Mullhausen
By Diane Mullhausen
Good News!! Keeping of the prayers for continued good reports!!
holly grant
By holly grant
Collin is getting so big and handsome :) Sending prayers for God to direct you and his doctors in all these upcoming tests and for the best results in all of them. I pray that you have a blessed fall!
Collin Is In His Grip!!

Holly Grant
C.O.L.E.’s Prayer Team
1 person hearted this