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Cognitive Issues with Patrick and GI issues with Collin

Hey everyone...I am going to try and consolidate this all to one post...and just copy and past...so if you have already read this on one of the boys' pages, you don't really need to re-read it.
     Patrick: Patrick's eye issues have seemed to resolve. I almost wonder if it wasn't pink eye all along and the swelling was causing the issues we saw. He hasn't had anymore allergy issues and I have misplaced his drops so I one can only assume that he doesn't need them since he's not having any itching or swelling or anything for that matter. He is doing well medically speaking. Cognitive issues continue to plague my boy. Mostly in the memory department. He is reading relatively fluently on a 1st grade level, but retains nothing that he has read. He took his eog testing (for those out of staters, that is end of grade testing required to be passed to move to the next grade for 3rd grade on in the state of North Carolina). His teachers have said that they don't expect him to pass them. But they are done now and he feels that he did well on them. Holding on to hope that his instincts are correct. Never the less, we have scheduled some more extensive testing on a neuropsychological level with UNC and hope to have a better plan of action in the coming months. Otherwise, Patrick is doing well and we are looking forward to summer time!

       Collin: The Collinator continues to do well with counts and all the "Leukemia biz" or lack thereof. He had blood work done yesterday and it was stone cold normal. What that means is a completely bizarre idea in itself in the world of us. I am going to talk about poop issues for a minute...so fair warning. He turned 8 on May 6...he has been off chemo since Sept last year. They told us he would be able to potty train after we stopped chemo and his body "righted itself". Welp, here we are 8 months later...and he still says he can't feel it when the poop comes out or is in his pants. Frustrated...yep, we are soooooo there! So before we accuse him of lying, because my first instinct is to think...."how can you not feel that?"....we are going to go to UNC GI clinic and push for testing of his GI tract. I desperately want him to be having emotional issues over the alternative which is likely some kind of nerve damage to his intestines/colon/rectum...emotional issues we can work through! Therapy is so much easier to swallow for this momma than a potentially permanent intestinal issue that could mean something like surgery...ostomy...all the scary things that I know one momma is already dealing with due to GI issues. The other thing we discussed was Collin's hair loss and general feeling like crud all the time. The theory on feeling icky all the time is that because he all he's ever known is cancer (since he was 2) that he may just be more self aware than the typical 8 year old boy. He is likely more tuned into his own body and while yes he may be feeling icky, it's likely nothing to worry about. I keep asking if this is normal...and their answer, as of now is that this is "his new normal" and it's something we may have to accept. Either way we are seeing GI for the ongoing tummy pain and general GI issues. The hair loss was perceived to be related to some pretty nasty cradle cap that Collin had developed after his hair started to come back in. We have since treated the cradle cap and still no hair in the bald spots. So now they are leaning toward permanent loss from the cranial radiation he received a while back. It's disheartening, but the lesser of the evils when relating to radiation and cancer.

Soooo, yeah, that's where we are as of now. Waiting to hear on the smear, the final say that says no cancer present with Collin. Holding onto hope that Patrick will improve and thrive and praying for anything but permanent issues with Collin's tummy and GI issues. I am exhausted, I am overwhelmed and yes I am bitter and angry that the treatments that saved my boys has in turn injured them both physically and mentally. But I have to count my blessings again that they are here. Maybe someday our government and country as a whole will stop turning it's back on kids with cancer and take real steps towards a safe and healthy cure. Love to all. ~ Kathleen (mom)
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Comments

1 Comment

Franklin Floyd
By Franklin Floyd
Oh gosh Kathleen, I hear you about the complexities and almost none existent awareness of childhood cancer. Cancer parents DO get so angry about it and unfortunately very few others do, because they just don't understand all of the complexities that more awareness might change. Almost no one, gets cancer, goes through treatment, and goes through the rest of their life in a "normal" way. A cancer diagnosis changes your life forever. There ARE side effects from the treatment and those side effects naturally affect children more so than adults, that is if the children life long enough to develop late effects. These late effects are NOT good things. So many chronic variables go along with cancer that we could write a book about it and it is more than maddening that only people with cancer or those who take care of one with cancer really GET it. Makes you want to scream. It is like a national Holocaust going on that no one pays attention to. I guess 12,000 to 13,000 kids a year is just not enough for national attention. Sorry for my rant Kathleen, these issues just hit a big nerve with me. I feel very tender hearted toward you in particular, because I know what a tough time you have been through and are continuing to go through. It shouldn't be this hard. I am glad that both boys seem to be free of cancer for now as far as the medical diagnostics show. At the same time, I am so sorry that they are both dealing with some late effects that are troubling to say the least. You and you family have remained on my prayer list and I will continue to ask God to grant you strength, peace, healing, and hope. Hugs always,

Rebecca Floyd
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