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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. www.caringbridge.org/visit/patrickhenry1


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

results from Friday

Hi all! So Collin had a checkup with oncology and a MRI on Friday. Being a holiday I didn't get any results until today. Overall things look decent. As the doc said "leukemia wise he looks great". His counts were downright stellar. The MRI didn't show any new bleeds or masses which they feel is good. But there were some abnormalities in the area of the bleed...or damage so to speak. The neurologist actually suggested that this was going to be what we could see. It does explain some of his behavior issues, the neurologist we are seeing now is actually leaning toward the idea of ADHD behaviors induced by this bleed. I would be lying if I said this didn't bother me. Matter of fact when the doc called, she asked how I was doing and I had a meltdown. Then when my husband finally called me back this afternoon after getting out of pre-jump I had another meltdown. It really bothers me that this is probably permanent, his new normal, I almost feel like I lost a part if him. It also really disturbs me that he had that bleed for weeks and I missed all the obvious signs.The headaches were pretty severe and I was attributing them to the high fever he had and getting sick, but he was also very uncoordinated and just not himself. I even told my husband one night at a baseball game that he just didn't look t right, something was wrong with him. But hindsight is always 20/20 isn't it. As I told the doc I am absolutely terrified that he will suffer another bleed and I will realize it too late or just wake one morning and he will already be gone. For those who don't know, while I was stationed in Italy right after basic training, my mom suffered a massive stroke. My sister found her on the floor in the early afternoon, disoriented, and unable to walk or speak. She now has the vocabulary of a 1 yr old, she is paralyzed on her right side, and while lucky to be alive she is literally trapped in her own mind, she can't hold conversations and can barely answer yes or no questions. This is not a fate I want Collin to suffer, but honestly everyone is quite powerless to stop something like that. And that powerless feeling is something I am all too familiar with. I have nightmares about this and others nearly every night. Where my kids are down in a grave screaming for me to help them but I can't. Or I see Collin's face and he is bleeding from his nose and mouth. Every single night. It's gotten to where I don't really want to sleep. I told my husband today that I feel like something in me is broken, I really hate these nightmares and not sleeping. So anyway, we are going back to neurology on Thursday morning for a sleep deprived eeg to rule out seizure activity as well. Then we are going to talk some more about getting something done about how awful he is feeling. So as of now we go back to UNC on June 30th for a follow up with oncology and physical therapy, Thursday with neurology and at some point we are going back to see ent for his "kissing tonsils" that are likely the culprit of his issues with swallowing. He's on another round of antibiotics to try and remedy that as a last resort they do surgery to remove them. Sorry that was a lot. And not a whole lot upbeat. Thankful that he continues to be cancer free, frustrated at the same time with what he is facing from a relatively minor bleed. Hope to have better news next post. Love y'all!
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Comments

6 Comments

Joyce Nosker
By Joyce Nosker
Kathleen,
Yes, I'm very thankful that Collin is cancer free and doing well, other than what you described. What you described sounds so distressing for you. Of course you have always wanted Collin to be healed totally, and without lingering side effects. I'm so sorry that Collin's "behavior" is distressing, but I'm praying he will be able to be helped. I'm also praying that this was a one time event!!!! For you I pray for peace in your days and peace in your nights. What you are describing sounds like PTSD, and there is certainly help for that, if needed. Please talk to your doctor if those awful nightmares and fears don't subside.
May the Lord guide the doctors caring for Collin to give him the best chance of returning to his life as if was before the bleed.
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Sandy Daron
By Sandy
Kathleen,

That is soo tough. I am soo sorry!! I pray Collin will continue to improve from the bleed.

IF you think the tonsils are a problem...I would suggest you get them out. They WILL cause sleep apnea as well. My son, Sean was soo sick and had sleep apena. Got those things out AND he has hardly been sick since.

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
Say A Prayer, Send A Smile, Make A Difference

https://www.facebook.com/ColesMakesADifference
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Sandy Daron
By Sandy
Kathleen,

That is soo tough. I am soo sorry!! I pray Collin will continue to improve from the bleed.

IF you think the tonsils are a problem...I would suggest you get them out. They WILL cause sleep apnea as well. My son, Sean was soo sick and had sleep apena. Got those things out AND he has hardly been sick since.

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
Say A Prayer, Send A Smile, Make A Difference

https://www.facebook.com/ColesMakesADifference
dawn k
By dawn k
Praying for you all. <3
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holly grant
By holly grant
Sending tons of love and prayers to Mr. Collin and his family.
Collin Is In His Grip!!

Holly Grant
C.O.L.E.’s Prayer Team
www.colesfoundation.org
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Amy Rosa
By
Oh Kathleen, you are such a strong women and mother, your children are lucky God blessed them with you as a mother! It's great news to hear that everything leukemia related looks good. I hate that you & Collin have to deal with the other stuff, surely you guys only deserve smooth sailing from here. I hope that with some time and more extensive evaluation, a plan can be made. I did want to say about the "kissing tonsils"...Marisa had kissing tonsils all through treatment, for years, and no round of antibiotic would help. Finally, we removed them and what a difference it made! Compared to the other things these kids have had to go thru, this surgery was cake. I won't lie, days 8-12 post surgery was hard, but nothing compared to cancer, so no doubt your trooper can handle it. If you can take even 1 thing off the list of things to worry about I would do it. As always, praying things get better each day! Take care of yourself, I know sometimes it can be an after thought, but it's so very important!
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