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Collin "The Collinator"’s Story

Welcome to Collin's CaringBridge websight! He is 8 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, but he is doing good. And for that I am thankful

Latest Journal Update

Neurology appt

So Collin had his neurology Appt yesterday. They said that the area that Collin's bleed is located is near an area where adults frequently have aneurisms. But they said they never ever see aneurisms in children, so they are stumped and concerned at the very least. They said there is a increased risk for another bleed, but they can't predict, prevent or really stop that. There's is just no way or knowing if or when that will happen. Basically we are going to wait til December and do another scan (they are going to do serial scans for a while) and add another test to the mix. The next one will have a MRA w a special contrast to specifically look for aneurisms. They said they could also do an angiogram but that is very risky and they are ready to got that route yet. Anyway, still playing the waiting game, quite nervously too.


The other day another family found out that h

There daughter as an inoperably brain tumor here in Fayetteville... She is very young and I am certain this family is overwhelmed right now but I don't doubt that your prayers would be appreciated as they embark on this journey. Please remember them tonight and also keep my boy in your prayers. I fear more than anything that I will wake to find he's passed in his sleep. Its not a reality I'm prepared to face. I'm including a pic of my bug being silly..he's always very animated...his pictures demonstrate that so well
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Comments

14 Comments

Veronica Slagel
By Veronica Slagel
Praying for Collin and for you so that you can rest and feel the peace of God with you. Prayers for the other family as well.
Kathy Catalanotto
By
Prayers for the other family, Collin, and all of you too! Hugs!
Kathleen Henry
By Kathleen Henry 'The Collinator's momma'
Barbara Whipple out if respect for the family and the request for privacy at this time I can't post a name. I'm sorry. God knows who we are praying for even when we do not. <3
Barbara Whipple
By Barbara Whipple
Will be praying if you could give us a name it would be appreciated
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1 person hearted this
Joyce Nosker
By Joyce Nosker — last edited
Praying for your little comedian. May the Lord watch over Collin and guide the doctors to provide the best care possible.
Also praying for the girl in Fayetteville and her family.

www.caringbridge.org/visit/larrynosker
Debby Mooney - St. Louis, MO
By Debby
Praying for Collin, asking God to give the med staff the answers you need, and for God to keep him safe and healthy. God bless you all,

COLE Prayer Team - www.colesfoundation.org
Debby Mooney - St. Louis MO
Lisa Ryan
By L. Ryan, down Georgia way
Wishing you peace of mind and heart, and celebrating the Collinator's spirit, which I am so sure will prevail -- along with your good care and love, the medical expertise, and the many keeping your boy covered in prayer. We will add this newly diagnosed young lady to our thoughts and prayers. Thank you for the update...
Ricki Walsh
By Love, Ricki Walsh, Collin's former Chemo Angel
I'm so sorry, Kathleen, that Collin, you and all of your family continue to go through these frightening trials. Your sweet boy is in our prayers every day, without fail. I pray peace in your heart as each moment passes. I pray for complete healing for Collin. I'm expecting a miracle for him with all of my heart.
Linda Woodard
By Linda Woodard
Praying, as always ... and also for this "new" family that has entered into this strange world. You are such a caring person.
That picture is adorable, and I am reminded of how skillfully he demonstrated your cat's movements to me yesterday ... animated, indeed!
Sandy Daron
By Sandy Daron
Hi Kathleen,

I am soo sorry there are so many unanswered questions. I pray for no aneurysms and that Collin will have MORE bleeds.

HAPPY THANKSGIVING!!

Love ya,
C.O.L.E.s Foundation
(Caring Openly, Loving Eternally)
www.colesfoundation.org
www.kidsunitetofight.com
www.colespages.org
Email: sandy@colesfoundation.com