Just wanted to add one more to this list. Last week, a few days after Sam started DI, my mom called and asked how he was doing. As per usual, I gave her all kinds of details, nothing too major but I talked for a few minutes, I suppose. She replied with, "So, how is everything ELSE going?". I paused, and then said, "Mom, there IS nothing else". I hate to be so critical of my own mother, but sometimes it's not only strangers or outsiders who say things that rub the wrong way.
How about this one...
"He gets a Make-a-wish? I thought that was just for kids with a serious illness." I've heard this more than once already.
"He's in remission? I'm so glad it's over!"
I realize these people just don't understand ALL, but that makes it no less maddening.
I know I make sure to tell anyone who asks (and sometimes those who don't) that his treatment will last for 3 more years.
I have this acquaintance who is very religious and has invited my husband and I to his church several times and we have never gone. When I told him about Evan's diagnoses he stated that it so sad that all this children have to endure illnesses like this because of our sins. !!!!! What ?!?!?!?!? The conversation didn't last much longer and I was left wondering if I really heard that right and thinking "does he really believe that?" Well no thanks I don't want to be a part of a church that would proclaim that my son is suffering because of my sins. I pretty sure the God I believe in isn't that cruel.
Poor little children they are so curious. My nine year old neice asks everytime I call if Evan has lost his hair yet, and I hear her mom yelling at her in the background that that is so rude and not to ask again.
On the rare occasion I get out socially, this is my favorite exchange:
He/She or Them, "So how is Joey?
Me,"Well, you know, it's pretty complicated. I put the details on Team Joey and don't really want to get into it right now."
them, "Really? You're still posting on that? I don't have time to log in. Can't you just get me up to speed?"
We know a minister with a cancer kid, and his friends have made him to feel like he must have done something, and now he is being punished. Shame on them. One lady actually said, in response to the family trying to raise awareness that their child would never get cancer, because she proclaims their life to Jesus, not cancer. gee, is that all we had to do? Hate to break it to her, but all children are eligible for this drawing......Jesus won't keep you from sufferingHe will just be there to guide you, If she were as "christian" as she claims to be she would know that, not to get all preachy lol but that really irritates me.
I hate hearing over and over how we should have banked our sons cord blood. Um actually, it would be useless, they won't give a leukemia patient their own cord blood..
I heard this one at clinic today - I almost posted a new thread on it, I thought it was so outrageous.
A teen at clinic is doing a combination of homeschooling and in-school work. (That's what Maggie does - where she has 2 different teachers, the home school teacher gives her the grade.)
The boy had an "A" from his home-instructor. The "in school teacher" gave him a "B." That brought his grade to a B+. The boy went to talk to the teacher, who explained that Her reasoning was that he wasn't in school enough, and she didn't have enough assignments to grade him on, so she gave him a B. He said to her - "but I'm out all the time because I have CANCER." The teacher retorted back - "well, I have back problems. That's no excuse."
(My thought was - yeah, this boy has back problems, and tummy problems, and bone pain, and headaches, and neuropathy, and fatigue, and mouth sores... and CANCER!)
The boy's father went down to the school and set them all straight. The boy got his A.
Annie zz - this is the best story I have heard in awhile. I an glad for the "A"
I felt like I kept things together mostly when my daughter was in treatment - she is 3 months OT and doing great, however all the stress and bad behavior and comments of PEOPLE are eating me up. My husband and I just had a big conversation of this 10 minutes ago.
We were at a neighborhood party on Sunday. A gal who I spent nearly every day with in the summer just 3 months before Kelly was dx (at 3) , her kids, her next door neighbor and her kids (the first stay at home moms I had met in my 'hood) came up to me at this party on Sunday and was like "Trish, have I ever done anything that offended you because I feel like you have been off putting to me today..." this was the way she felt this Sunday at another friends party...and I was like really? Do you really want to get into it? Well, here is the reason, we spent 3 out of 5 days together for an entire summer and then once Kelly was dx, (and she and her mom are NICU nurses) she never once came over, called, anything to even acknowledge that we were going through this "event". AMAZINGLY every other neighbor did, but besides the point. Her reply and she did seem armed....was that she never really considered us "good friends" and she was sorry I felt this way. " I still am so hurt....by the fact they never even acknowleged we went through this - or the fact that she never considered us friends enough to acknowledge it. Am I being too sensitive? I mean isn't that what neighbors (even if not good friends according to her definition) should do??
That was a nice excuse. People we hardly knew came and offered help after Elias' diagnosis. So, that was a complete line of BS. Now you know who she is. From here on out, she is a lady who lives down the street. That's it. I wouldn't waste time being angry or upset, she obviously didn't.
it's 6:30am right now, I'm reading some of the latest stories and I'm not sure if I want to laugh or my blood starting to boil, and I know it's not the cup of java.
People say things because of lack of knowledge, I understand that. I have to think back before Casey's dx, I didn't know much about the Leukemia treatment and the length of it. But for haven sake, be sensitive about it.
If a teacher in my son's school compared her back pain to cancer, the whole school district will be shaken up, that is a given. A neighbor that need to put a degree of friendship in order to respond to a family crisis, I don't even know what to say about that. I had people showing up with trays of food and I had no idea who they were.
Justysmom, I don't know what adult doesn't know that Leukemia is a "cancer". They all deserve more then one wish...
Ladies, it's time to start writing a book...
As a former teacher, and the mother of a child with cancer, that person should not be allowed to work with children. How dare he/she compare their back problems to cancer. Teachers, by nature, should be compassionate and understanding. A teacher is supposed to be an advocate for the children. That kind of behavior is just wrong! It sounds as if that person is burnt out, and if so, he/she should take some time off. Also, if the teen has a 504 Accommodation plan (which I assume he does because of the home schooling), he should not be penalized for missing school. My son missed 80 days of school last year and 20 days (so far) this year, and he's been off treatment for a few months. His school doesn't penalize him for his attendance. I would take that complaint to the district superintendent and demand that the teacher is reprimanded.