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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

Tests

So we have to be at UNC at 7am...I should be asleep because I have to get up at in an hour and fifteen minutes to get myself ready and the collinator ready as well. Obviously at this point I'm not going to get any meaningful sleep, so I gave up trying.

On a positive note, Collin played a great baseball game tonight, even pitched an dining and for an 8 yr old playing w 10 yrs olds he sure put some heat on it. I was very proud to see him out there having so much fun. He laid down on his bat bag outside of the dugout after the game, so I know he wasn't feeling great. But overall he has had a good day.

So I emailed the oncologist, asking what they are looking for in the spinal tap in the morning, response was leukemia/white cells/infection. The thought of relapse is debilitating for me, and him too. I cried and told me tonight how he is scared about all that is going on. Me too buddy, me too. He has taken to sleeping with me again...which is fine. Though his forehead is pressing into my shoulder and that's not all that comfortable lol.

They opted not to do the MRA yesterday, stating that it would only really show things that would've been evident on earlier scans and there are no signs on any previous scans of those issues. So they sent us home, going to do the spinal tap later today. They are also ordering neuropsych testing to establish what kind of damage there is and to what extent. They said they don't know if it'll get better or worse. They don't know if it will bleed anymore or what is causing the bleed in the first place. Nobody knows what this is is what they said to me. It's scary to know that they experts don't have a clue. Basically they said further personality changes, vomiting and headaches warrant an immediate trip to the er. So we are going to watch him closely, and pray for the best news possible, whatever that is. While your at it pray for peace for the family...everyone is struggling with this. It is thoroughly exhausting.

Hope to have more/better news tomorrow, but might not be until Monday.
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Comentarios

13 Comentarios

Billie widman
By Billie widman
We continue to keep your family and you in our prayers.
Marge Castee;
By Marge Casteel
We want you to know that we continue to hold you and your family in our prayers. - Family of Jameson Casteel (02/13/1997 - 10/21/2009)
Joyce Nosker
By Joyce Nosker
Praying for Collin and you as you wait.
Veronica Slagel
By Veronica Slagel
We are praying for peace for all of you, and for the best test results possible!
Barbara Whipple
By Barbara Whipple
Out on the prayer line prayers going up
God Bless
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Caterina Grove
By Caterina Grove
Thinking of you courageous Collin and sending tons of support, love, encouragement and prayers!

"An infinite God can give all of Himself to each of His children, He does not distribute Himself that each may have a part, but to each one He gives all of Himself as fully as if there were no others" - A. W. Tozer
♥ ♥ ♥ ♥ *GOD LOVES YOU* ♥ ♥ ♥ ♥

In His Love,
Caterina caterina@colesfoundation.org
C.O.L.E. (Caring Openly, Loving Eternally) Prayer Team
www.colesfoundation.com www.colespages.org
24/7 Prayer Line 888-365-COLE (2653)
www.kidsunitetofight.com

"There are many Americans who are clever and fearless, but the trouble is many are small children fighting an ugly disease."
Ricki Walsh
By Ricki Walsh
May Collin be filled with God's Healing Light and may you all be filled and surrounded in peace. We continue to hold you up in prayer.
Sandy Daron
By Sandy Daron
Hi Kathleen,

I pray your sweet boys' testing goes GREAT today!!

I pray there is NO cognitive damage!!

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
melinda harper
By melinda harper
Praying for your sweet boy and peace fr your Family
melinda harper
By
Praying for your sweet boy, and for the rest of the family