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Patrick’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated about Patrick.You can get caught up by reading the "my story" tab above and we will post more information as we get it.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.

UPDATE: The official diagnosis was made on Oct 20, 2010 and it is high risk stage II Hepatoblastoma.

On Sunday night, Oct 10, 2010 Patrick told me his side hurt, and he pointed to the right side just below his ribs. Upon inspection I noticed a slight bulge under his skin there and when I touched it he winced.  There were no marks or scrapes or anything, just a bulge and some pain. So I called the advice nurse and she told me to take him to the ER. Once at the ER the doctors immediately thought it was appendicitis and asked me what I wanted to do. They said I could take him home and watch him or get him checked out...I called my husband and he said get him checked out...so we did. They started and IV and got blood work and then he went to ultrasound. They could not see the appendix on the ultrasound, so they put in for a CT scan...and that was about 2am...at about 4am the docs came in and sat down..."he has a mass on his liver" The doc was very concerned and wanted to get an MRI and a biopsy...but I didn't want womack cutting on him, so I asked to be referred to his Pediatrician and they got a second opinion on the scans for me. They verified the mass as well and referred me to UNC Chapel Hill, where he is currently seeing Dr. Gold (collin's oncologist). He underwent surgery on Oct 15th where they resected the tumor, the left lobe of the liver and a lymph node. After a few worry filled days we got the diagnosis, stage II Hepatoblastoma. Originally they believed it to be high risk, but later they said they believed one of the markers was only off because of the unusually early stage of diagnosis.  He had his port implanted on Nov 2 and began treatment on Nov 3. So far things have been very rough, he has been nauseated and vomitting for the last three weeks...some days more than others, but at least once a day he says he either feels like or actually does throw up. We are not really sure how long treatment is going to last, for now they are saying 4-6 months depending on his response to the chemo. We are praying that he does not have any of the long term side affects of the chemo (kidney damage or hearing loss) but for now we worry about the present! Prayers always welcome and please sign our guestbook and let us know about your visit! We thrive on the visits of those who care!

Latest Journal Update

back to school

Hey all! So fair warning, this one is a bit of a downer. Nothing significant has changed in the last month regarding diagnosis, etc. I am however struggling with some of the issues the boys are facing.

We decided to hold Patrick back, again. He failed the EOGs but received a waiver to go onto 4th grade, but the reality is that he wasn't ready for 3rd grade and it showed in how much he struggled and fought all year long. To push him forward to 4th grade for the sake of not holding him back seemed silly to me. He is just not ready. He is still struggling greatly with reading, and memory problems. He is scheduled to get some more intensive neurocognitive testing done on October 6th and I am hoping we will not see any downward trends in the results of that. So tomorrow we will start another year in third grade. I have seen the look on a lot of the administrations faces as well as teachers faces saying they do not approve, but I know the frustration he faced in not being ready last year to move up. I can't see putting a child who is reading on a 1st-2nd grade level in 4th grade...he will just get more discouraged and defeated daily. I want him to get excited about learning and that is going to come from understanding what is happening. He needs another year. That's all there is to it. I fear his hearing has also slipped a bit more so I will be pushing for audiology to retest in that area.

Collin, oh my boy. He is 8 years old, going into 2nd grade and he is unable to control his bowels. He cannot feel when he has to go, or if he has gone. It's daily, multiple times a day. He will tell me he hasn't had an accident, I'll check and sure enough he will have stool in his britches. We thought for a long time he was scared, and holding it, or just being too busy playing but the more he is able to describe things the more I wonder if there isn't some kind of nerve damage from the chemo going on there. He is wearing pullups at this point, as I can't afford to have him ruin all the undies. I am so worried about how his peers will act, if they will notice. He doesn't notice and sometimes I don't until he sits right next to me. We give him miralax all the time, senna cot weekly as well and all it does is cause a mess. He doesn't realize he's gone til it's running down his legs. On top of that we noticed he was really struggling to get the homework done last year and to keep up in class. He has both a GI appt as well as a neurology appt coming up along with his appt with the oncology team.

I am feeling really defeated today. I had a terrible nightmare last night, and then woke to worries of this nonsense. I need to get Patrick caught up so that when he gets to middle school it won't be an issue if they push him through the grades. I am thinking of doing some extra stuff with him to try and push him ahead and get him caught up if we can. But I have to look into the laws for testing out during the summer for North Carolina. It's all really trivial in the grand scheme of things. After all they are alive. But I hate the word survivor...after all, do you merely want your child or loved one to simply survive...to merely exist? Or do you want them to thrive? Personally I want the very best for my children. I want all their dreams to be realized, and if that means becoming a mlb ball player, or a doctor, or a soldier, then so be it. I don't want some stupid, half cocked, made for adult cure to put out the flames of their dreams! I have been a mess all morning trying to find a way to deal with this. I want more for my children. I thought about taking them to another hospital with a fully functional survivorship clinic to deal with the issues, but the oncologist wants a crack at things. I just can't tolerate the "this is your new normal" answer anymore. I can't accept that. There has to be other options and alternatives for these kids. Might have found my new mission in life, advocating for kids after treatment ends....who knows.

As it stands now though, Collin starts 2nd grade in pullups, Patrick is held back for a second time due to cognitive issues, momma needs some serious counseling to deal with her demons over this. Tomorrow is the big day for the boys, wish em luck! Please pray for patience for myself with the docs and school, as well as the wisdom for both of them to do whats right by my boys. Thrive, don't just survive!
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4 Comentarios

Marge Castee;
By Marge Casteel
We love you and want you to know that we are keeping you and your family in our prayers!
- family of Jameson Casteel (02/13/1997 - 10/21/2009)
Mary Stevens
By Mary Stevens
Are either or both the boys in Special Education with an IEP? It certainly sounds like they should have at least been tested by the Child Study Team at their school to see if they qualify for any services. I think that you are absolutely right that neither one will be able to make it in regular education without some support. If they do get identified as eligible for Special Education they will have a right to services through their 21st birthday. Please let us know if you feel like sharing that. My prayers as a parent are certainly with you!
Joyce Nosker
By Joyce Nosker
Praying for all of the boys' needs, as well as yours. Sounds as if both need so much done as far as diagnostics and treatments. They deserve more than just being alive, and you need help to know how to help them and cope with these trials.

God bless all of you.
Lisa Ryan
By Lisa Ryan
I applaud you, wholeheartedly, and wish I could take away the disapproving looks from educators who should be the first to understand. As a former teacher, i can assure you they aren't thinking about your boys but about their STATISTICS. And i respectfully steal your line about the "new normal"! I'm officially classified as "totally and permanently disabled," and this seems to give health professionals the right to assume that any further declines in my abilities or worsening of my pain/disability have no weight in their decision-making. "She's already damaged goods... a little more damage won't bother her!" Grr! So, yes, you fight for your kids, because you know that the impact of their treatment must be addressed with the *long* view of their future success, not with short-sighted conveniences. Just remember to take care of YOURSELF, please. [didn't mean to vent, but it felt great!]