Thank you for bringing it back around to being about an education and not about religion. Sadly the one school equipped for Kaeden (and very excited about him) has not gotten their McKay Scholarship approval. Without it we can ill afford $1000.00 price tag a month. All of the other schools in this area are "Christian" with very strict thoughts etc. With Kaeden being our grandson out of wedlock to boot~Somehow this southern Christian thought process will always seem to want to tell me that "Kaeden is not good enough" etc. I have actually fought with Christians who have come to my door begging for me to join their church. I bait them....What do you think should be done with unwed mothers? (This was prior to my daughter) and I have had them all tell me that they had no place in their church. (We have known really great girls and their families asked to leave the church but not the boys families) I find this against what I have been taught. "God loves everyone. He is not a cruel God AND your supposed to bring the sinners to church not remove them"
This also brings me back to a very close family member telling me something that shook my religion to the core when Kaeden was dx. She was my mentor so her thought processes were shocking to me. She was 90 and was probably suffering with dementia but it was no less traumatizing to me in my hour of need. She tried to tell me that if it is"Gods will" then no amount of praying was going to change it. WHAT? This was a person who always said "ask God and you shall receive" (which I refrain from asking for anything but life) and she is telling me that all the prayers that are being said are falling on deaf ears because God wants him. Its like seriously, even if you believe this stuff it doesn't help. How is that comforting? Why even take a child to the hospital if it is fate?
I do believe in the power of the human spirit and the power of prayer. I also believe in the medicine. I believe in our doctors and nurses. When it is all said in done~ You just need to keep believing and stay positive and maybe be happy if these people stay out of our lives for the duration.
I think this discussion is awesome. It's nice to know what other people think and how they feel about this. We all have our own beliefs. I personally have a belief in God but am not so sure about the Bible and tend to look at things more spiritually as opposed to religiously. I don't mind people saying they are praying for Emma and I don't think God's plan was for her to get sick. I do believe that I had some extra 'help' in preparing for it and dealing with it, though.
It is so nice to hear your response. I completely agree with you. This was such a fun thread and somehow turned into a dicussion about religion which I agree has been VERY civil. I've been sitting back reading and not saying a thing. My husband and I are NOT religious either but never get offended when someone offers up prayers. I figure that it is just their way to respond to such news as Childhood Cancer. I just say thank you and move on. We went on one family retreat and the circle of parents one day became a discussion on religion ending with a group prayer. My husband and I felt uncomfortable but we know this comforts so many so we understand.
-Why are you going the chemo route? I heard they are doing amazing things with stem cells! (From a genius at the hair salon)
-You should be feeding him better. You let him eat that?
-Austin has these little rolls on his belly when he bends over and he jokes about how it is his hot dog when he can get three rolls together. He always shows his nurses and laughs about it. I don't mind these rolls at all. He is by no means chubby and I like the little bit of extra weight on him opposed to him being too thin in case he stops eating for a week. Well, a new doctor at our office jokingly said he might want to get rid of those rolls! I definately complained to our usual nurse when she got back
I agree with you both. When my daughter was diagnosed at six she was thin to begin with due to loss of appetite as one of her symptoms before diagnosis. At Induction she had severe neutropenic colitis which dehydrated her and led her to have a seizure. She was so weak and tiny and couldn't stand or walk that they weighed her in a baby scale and she was six! Extra weight should never be commented on especially since they "know" these kids are on the steriods!!!!! I'm glad you mentioned something to the nurse.
WOW what can I say but we have had an experience similar to yours!!!!! We live in FL and the only family is/was my father-in-law who lived 1 mile from us and was a part of our family business for 13 years previous to our daughter's diagnosis. My mother-in-law was AWESOME but died a few years (from CANCER) before our daughter was diagnosed. In any event when our daughter was diagnosed (April 2008) the economy was doing a number on our business already and a few months prior, my father-in-law got married to an 80 year old woman he had only known a few months who was VERY unsupportive. Long story short - my father-in-law (who WAS super close to his grandkids: at the time six year old daughter with Leukemia and 8 year old sister) just "walked away from us". He never came to the hospital but one time with his new "wife" and all they did was talk about the fact that they were newlyweds to the nurse. All the while my daughter who just got out of the
ICU and was on the regular hospital floor for another ten days was weak and sick. We lost our business and were being sued by vendors and my father-in-law just said that he couldn't help us (more like wouldn't). My brother and sisters who live in different states never called or sent cards. My mom who lived in California said that they didn't want to make me sad! My parents where somewhat supportive but my mom never flew down when I needed her the most. Without the help of my father-in-law we saw our 13 year business slip away and lost our home and cars all while being in the hospital also through Induction and many, many, many times during the first 8 months. Needless to say we don't talk to my father-in-law anymore. My husband now has no parents, no business or career and we are struggling more than ever even though our daughter just finished her treatment.
I'll stop my RANT now.
Since this thread is about things that shouldn't be said: I think my father-in-law said many things in the beginning that were unbelievable that I can't recall but one of them regarding our financial situation was "hey, just file bankruptcy and that will fix everything". Yeah - but with our business going under and child always in the hospital how is income suppose to come in to pay the basic necessities! Also, after her seizure and intebation, he needed some information about our business and called me in the ICU and said "Everything is ok now, right?" I guess since she was still alive that it meant everything was ok. Duh.. things were not ok at that moment, hense being in the ICU.
I will never get over the lack of support and stupid things that people have said. The best one is "Oh, you will be so much STRONGER"......
Ann, PLEASE don't ever apologize for being negative; we aren't the fluff and flower friends that, unfortunately, so many of us have discovered the people who we thought were friends are. We're the warts and worry friends that you can spill to and no matter what, we'll still be here,worrying with you, completely on your side and cracking our gum, painting our nails and more or less sober late at night
I just had one last night on the phone...
A family friend called, who I haven't spoken to in 3 years, because she is going through a rough patch and nedded some support!!!! Are you kidding me? Not a note, email,letter nothing since Jakob was Dx. Part way through the one sided conversation she says "I think of you and know you made it through Jakob's cancer scare and now I need your strength" What the heck! I not so calmly told her Jakob wasn't done treatment yet and that I still needed my strength for my own family then hung up.
I have a good one to share. Early on in Denise's treatment, I was at my hair stylist and she curiously asked what the "survival rate" is for children with ALL. I proceeded to tell her that depending on a multitude of factors, it is typically between 85-95% (these were %'s quoted by our oncs). Her response was "well, that's not too bad, those don't sound like such bad odds".
Seriously??? What the heck????? I was so thrown by her response, I was speechless!
Thanks Nana for sharing that one. I would love to say that I am stunned but we seem to share some friends and family~ Good for you for hanging up...Someday, hopefully I would like to be able to let this stuff go but I think I will need a whole new set of friends and family to be replaced who have went to sensitivity training. Its like on facebook when they ask if you know someone who needs a "slap up side the head and it really isnt their fault". Maybe we should open up a school with ShakingQuaker......lol
P.S. I just think some of us have a larger amount of idiots/insensitive people in our lives.
I have a standard answer to the prognosis, or what are his/her chances questions (its not original, borrowed from another blogger, but works and makes me feel better) "there are lies, dams lies, and then statistics, a prognosis is just a statistic and she's my baby, not a number" it shuts them up, 100% of the time! (yes a little rough, but the people that i care enough to share the statistics with already know, the rest i don't really give a da*n about their feelings!