Hello.
My name is Ann and my son was diagnosed with ALL on September 18, 2009. He is due to complete treatment in December of this year. While he has been doing relatively well throughout, he had a very serious set back last June. He'd been complaining of stomach pain off and on for a couple of months and I suspected he may have a problem with his liver function (based on various other signs/symptoms). His oncologist thought it was just gastritis and tried to treat it with Pepcid.
Anyway, we were in Iowa for vacation last June (I grew up there and my entire, extended family is there) and on the day we were due to fly home my son had a seizure at 5 a.m. He spent 3 days in intensive care and 2 more days on the oncology floor. After being seen by several specialists at the hospital in Iowa, it was determined that he had experienced liver failure, which cause severe hypoglycemia - and that's what triggered the seizure (he glucose level was less than 10 when they were transporting him to the hospital in the ambulance).
It was a tremendously traumatic experience - particularly because it was only by chance that I was sleeping in the bed with him that night. At home, I had recently been trying to transition him to his own room. We were staying at my aunt's house and she only had space for us to sleep together in the same bed (my then 12-year old daughter was sleeping in a twin bed in the same room). If I hadn't felt him trembling in the bed next to me, I wouldn't have known what was happening and it is no exaggeration to say that he could have died or, at the very least, suffered severe brain damage.
Thankfully, he was fine and made a full recovery. He had to be off his treatment for a month, but then had to go back on. So, here we are, nearly a year later and he's having some of the same symptoms. At least now we know what the problem is and can take steps to prevent it from getting worse, but I am so exhausted after 2 1/2 years of dealing with all of this and I'm having flash backs to that morning and the thought of what could have happened. I know people mean well when they say, "I don't know how you do it all" but sometimes I feel like responding, "What choice do I have?"
I hate to introduce myself to the group on such a negative note, but I'm feeling so burnt out and we still have 9 months to go. Thanks for letting me vent.
Ann
I'm sorry your onc didn't believe you in the first place. That must have been awful. You're in the right place for support, though we are a little slow to respond sometimes... Because we DO know how you do it, and what you are going they since we have been or are there now....
Hi, Ann. Sorry to "meet" under these circumstances, but we're here!
You and your family will be in my prayers!! Stay strong and you all will get there!!! Best wishes!!
Thanks to you all for your kinds words of encouragement. I'm sure you can all relate - some days are just harder than others and I think yesterday was one of those low points. Do any of you use CaringBridge or other such sites? I've found that helpful because people leave encouraging messages, but it's true that most people don't really "get" it. I'd love to hear more about your experiences with your children and how you have managed through it all. I'll be looking forward to getting to know you all. Have a great weekend!
I use caring bridge, yes. I like it, too, for the same reasons. Wanna share links? My daughter is in remission from ALL right now. She was diagnosed December of 2009 and just came off of her chemo.
http://www.caringbridge.org/visit/penelopenejedly
Ann,
I work for the Leukemia & Lymphoma Society, the Suncoast Chapter in Tampa Bay. Have you reached out to your local chapter for support? http://www.lls.org/
Also, we always have honored heroes for different campaigns throughout the year. Have you considered having him be an honored hero? It generally makes the child feel like a celebrity and provides a positive experience during so much pain.
Cancer child needs prayer
- anninnj
on Mar. 29, 2012 at 2:30 PM