Stinky Cheese—(pē-ewe) n: 1) Misbehaving kids. a. Misbehaving chemo kids brought on by any number of factors or any combination thereof. b. Misbehaving siblings of cancer kids incited by many factors. As has happened before, this "story" began in the Guest Book. You'll see I finally found one that I got to working; I'm sure that in short order it will be as active as it once was. Anyway, the serious side of the issue of the behavior of cancer kids is just one more part of the trial you have to deal with. One parent shared that "Once we made it past the treatment, I discovered I had a monster on my hands." A child life therapists told a struggling parent, "If it was wrong before cancer, it is wrong during cancer." Intellectually, I understand, but how do you apply that when you're in the thick of it with a very sick child? You (Squirrel Tales readers) have explained to me that you gave in to your child's demands to avoid a screaming fits in public places. It's too hard to say no when your baby is too weak to move or vomiting from his shoe soles up. It's easier to give in when you're exhausted. Compounding your dilemma is determining what is "normal" behavior (you know, how would your child behave if cancer had never entered the picture?), what is accelerated by cancer, and what is exclusively the cancer's? So what conclusion have I drawn? ««Big Sigh»» Beats me—as with most other topics on Squirrel Tales, let's just share the stories and smiles.
Lisa, Mommy of Angel Shad
Well...it's three years since our daughter's treatment ended - doing fine except for the residual "stinky cheese factor"! :-) It's so hard to say no, when you know how much they have endured in their young lives. Our daughter was 23 months old when she was diagnosed with neuroblastoma stage 2b. I'm happy to endure the "stinky cheese" as long as she remains healthy and happy! My prayers go out to all of you and your children. Visit my webpage if you want to see pics of my cutie pie.
Thanks to Barb for this article's title Barb Martorana
Dear Rob, Cyndi, et al, - Any behavior problem, as a parent, is hard to deal with... even without cancer being thrown into the equation… and I can tell, that both of you are far more knowledgeable than I with this subject. The only thing I can do is offer a pausing moment to all parents... (fyi. recently, I’m kinda a’lurker, an ole’fart, a hazbin, & constantly puddin’ my 2cents in, a kindov, nobodyaskedjustmyopinion yabberin’) Our daughter was 2.5 when dx. in Feb. 1997 and has an older sister by 5 years. She was treated w/ 2 years of chemo.) The steroids are, perhaps the most difficult, emotionally, for any parent to deal with... --- a 3 year old w/PMS,--- the ole’ Jekyl & Hyde,--- a Sybil,--- to name a few... The rest of the chemo repertoire harbors many pitfalls AND NOTE: the aftershocks haven't all been recorded... e.g., a chemo called vincristine… affects nerve endings... I'd look there first Rob & Cyndi, yet, I'm sure there are others... Bottom line: You can have a well-behaved child with cancer or you can have a spoiled terror-brat with cancer. (This applies to siblings too…) How many times do we look at our children and see ourselves? How many times (especially recently) do we still find the child within ourselves? “What was the hardest ?” she asked… To me, the hardest is, ‘the growing up part… that was the hardest. The part of not being certain... the part of not knowing for sure... the part of wondering. The part of “am I doing the right thing?” So… whaddya’ do ??? A wise man once told me to... "Be fair. Be loving. Be kind.” It applies to more than he was talking about, and the kicker is that I don’t think he believed I was listening . . . Even as a parent of a child battling cancer. . . I think that's the best anybody can ever do. Yet, always as a parent… beware. Our children are sponges. They don’t miss a trick… We’d like to pretend that they don’t know… We are wrong and…. They understand. Even more than we understand… Again… The child teaches the parent.
…and as always,
-Stand Hard. -  A problem child is one who puts two and two together and gets curious.
May I wade in with a humorous story I heard some years back at a Candlelighters Canada convention in Calgary, Alberta, relating to behavior problems with CKs? The mom was wringing her hands about how impossible her son had become—having been spoiled with attention and presents while in treatment. He pushed his luck once to often with his older brother who had him pinned to the ground with a fist hovering over his face ready to unleash. Big brother paused long enough to query, "MOM! WHAT ARE HIS COUNTS?!"
Sorry, I have no wisdom or advice here. I just like the story. Smiles.
Debbie, that story was so funny! Thanks for giving me a laugh today!!! It's so nice to know that Ryan isn't the only one struggling with the "after-effects" of having Leukemia. I thought that after making it this far, it would be a breeze......Ha!Ha! We still have so much healing to do. Leukemia strikes the entire family.....My 5 year old (who just turned 2 when Ryan was diagnosed) is just now seeking counseling due to the effects of diagnosis on our family. After 3 1/2 yrs, Leukemia is kicking us in the teeth again..........Thank you ST for always making me feel good! Sincerely, Michele, Ryan's mom (and Miranda & Bret also!)
An Urgent Prayer Request
Look out if your kid is in the hospital anytime in December!!! It is PRESENTS galore! I once put a sign on John's hospital room door with the International Sign for NO (circle with a slash) over the picture of a wrapped present. Our son thought I was the absolute meanest person on the face of the earth. I had also written these words under the "No" sign "Please, no presents, we have to live with him when he goes home!" You should have heard the laughter outside John's door as the people read the sign (of course by then he had been in the hospital 18 times before). Back to the behavior problems, I guess I should have mentioned that the neuropsyche evaluation done on John as a routine pre-BMT test mentioned the possible sensory intregation problems, that's why the psychotherapist suggested having him tested (she read the report). None of the oncologists ever mentioned it to us or what it was or that there were options to deal with it. Then again, this was before John's BMT and the docs were concentrating on saving his life, not improving his behavior. I just wanted to share that maybe there could be more going on than the stinky cheese factor (I like that expression). And maybe not. Good luck everyone. We keep you in our prayers.
Hello everyone! Finally, I realize I am not alone! I thought my daughter,Kelsey(dx Wilms 4/02),was the baddest kid around!Spoiled doesn't even begin to describe her.I think she thought that since she got bags of toys everyday at the hospital, then that's what it should be like at home. WRONG!!! At first I'll admit she did get pampered,but I learned very quickly that she knew exactly how to get what she wanted!I always felt so guilty when she would get something,so I would buy something for all my girls.It got pretty expensive buying four of everything! And don't get me started on attitude! Kelsey is an original DRAMA QUEEN.She can make the biggest deal out of anything.I'm glad to hear of these sensory problems Cyndi,Thanks.Maybe this is something I should talk to Kelsey's Dr. about.Gary-I agree with you 100%. You should always follow your gut.My gut feeling,as well as the wonderful skilled doctors at Riley Childrens Hospital, is why I still have my little girl today.A mother/father should never second guess theirself.They know their child better than anyone.God Bless everyone.You are all in my prayers.
We met with the teacher on Sept 5 and tried to tell her they will be a hand full and that they have never had many rules as they have five other siblings catering to them all the time, day or night. Whatever they wanted they got.
There have been times when we brought them home after being in the hospital for three months we would have to get them whatever they wanted even through the night. Then have them say to us they don't want it anymore after you cooked it or brought from a late night take out place. The rule in the house was you never say NO! to them because of what they have been through. Even there older brothers & sisters would get them what ever they wanted if they were requested to by one of the twins. Even the ones who got up and went work or school the next day! There brothers are 24 & 10 yrs of age & the sisters are 22,21 & 9 yrs of age. Our 10 year old son didn't even want to have Christmas when Ellie was first diagnosed if she couldn't be home for it. All the Grandparents had their hands in their caring of the girls too & you now how bad it can be with grandparents just spoling a normal child so you can guess how badly they were spoiled. The girls never had a bedtime since treatment started with chemo therapy & mega amount of drugs, there were many sleepless nights for 25 months and I still don't care if we have to get up with them now because God blessed with two little angels. So please don't forget what your child fought for it was a battle for thier life. We know that these are hard times for everyone in the family, but always remember what is tomorrow going to bring? You can never spoil a child enough, love is what gets us all through these hard, stressful times.
"That's nice of her to take such an interest in your family, Dear. What did
she say when you told her that you are the only child?"
She just said, "Thank goodness!"
I remember our Daniel having major behavioral problems while on prednisone. Our whole family hated that week. It got to the point, where I had to buy the "right" foods for that week, so I began letting him buy everything off the shelf in the store he wanted. Soon, he even was acting demanding when off prednisone...and the other two children noticed.He always got his way...it was survival!!! I spoke about the problem one day with the childlife specialist, and than later to child psychologist, she said what form of discipline did you use with your other two children at this age....wow...a big light went on, and I realized, they had challenges at age 3 too, and I had taken parenting courses and used a great technique called ONE, TWO , THREE, MAGIC, there is a book and video , at our local library. I realized that because Daniel was sick , I wasn't using any at all. I than was told that there was a free parenting course thru our hospital which used that 1,2,3 method and I took it, and it really was helpful, just to be in a parenting group, with other parents going thru normal kid behavioral problems. I found this really helpful at the time. (however, between you and me...well, my problems were a bit bigger than most, like that Daniel was refusing chemo. for a bit, he was so stubborn that a few times we had to hold him down, but, most of the time the Child Life specialist would come in a bribe him . Once he was so high on steroids they gave bribed him with a new video game. The eventually lowered his doses, and stopped increasing his prednisone. The best news is that Daniel is now a year off treatment and has adapted really well in school, he just started grade one this week. I know when he first finished it was really important for me to immediately change the grocery store routine, and he had one bad temper tantrum, and that was it. He now has no behavioral problems, and the teachers at school don't have any problems. Thank God. It was so exciting and emotional sending him to school for full day this week. WE know how blessed we are and I pray for all of you currently struggling...I pray for you to receive the strength you need to get thru today.
Without missing a beat one little boy answered, "Thou shall not kill."
We too had our share of "spoilage"! Dustin was 12 during his treatment time, and believe me, an older kid can get just as spoiled!!! The bad thing is that 12 year old "toys" are SO expensive!! The good thing is that treatment was only surgery and 8 weeks of radiation, so it was relatively short lived spoilage!! I was the culprit. I just wanted to see him smiling. My family just knew he would be completely rotten when I was finished spoiling him, but you know what? He's not at all. I gradually started saying "no" more, and being less endulging,(sounds easier than it was!) and he soon settled back to normal. Its probably best to maintain that sense of normalcy for them, but its impossible not to spoil them some!! The psychologist told me that constant attention and spoiling was contributing to Dustins anxiety attacks, so I really had to be conscious of trying to treat him like everyone else. Its still hard 2 years later, but I'm getting there! He is doing fine.
A grandmother had taken her two grandchildren out for lunch and boy did they misbehave!
On the way home one of them, the 7-year old girl asked, "Grandmother, will you tell Mother how we acted?"
The self-righteous grandmother answered, "No, but if she should ask, I can't lie."
To which her little grandson said, "What do you mean you can't lie? I'm only 5 years old, and I can lie great!"
I love the stories of spoiled kids... My daughter Rachel was diagnosed (at age four) with Wilm's tumor in May, 2000. She was absolutely bombarded with stuffed animals. In August of that year she saw a stuffed dog in the hospital gift shop. We said, "absolutely not!" The next day she had her simulation for radiation. She was so scared that we did the old bribe thing and told her she could have the dog if she stayed still. Well, she didn't move for 45 minutes! It was worth getting her the dog!
One thing that has helped though... When Rachel was originally diagnosed, and since her relapse (May of this year), all our friends, family, coworkers and neighbors wanted to know what they could get her and what they could do. We discovered they were going to buy SOMETHING no matter what we said, maybe just to make themselves feel like they were doing something! So we have been very specific about donations. When she was first diagnosed we put out the word that she had received more than enough gifts and would anyone who wanted to send something PLEASE make a donation to the Ronald McDonald House. Over $500 was raised on Rachel's behalf. More recently I asked my co-workers, who all wanted to do something, if they would contribute craft supplies to the hospital play room. They were thrilled to do something and they collected a huge box full of supplies. Rachel was happy to be able to bring them all in and donate them... and we didn't have another huge box of gifts in the house! So far this has been a good method for us... Friends are happy that they're doing something to help, Rachel is happy because we explain what the donations mean, and my husband and I are happy because we've been able to mitigate a bit of the "stinky cheese" effect! (Though... my 9-year old son has been terrific through this whole thing, and I'm trying to think of something special for him. If anyone knows Nomar Garciaparra (Red Sox) and can get a signed photo from him for Alex.......)
I keeping all our CKs in my prayers.
Always end the name of your child with a vowel, so that when you yell the name will carry.
Kevin turned to his younger brother and said, "Ryan, you be Jesus!"
"Have you ever broken a bone?" he asked.
"Yes," the girl replied.
"Did it hurt?"
"No."
"Really? Which bone did you break?"
"My sister's arm."
When he got on a tricycle and began riding up and down the aisles, the manager of the toy department approached the mother and said, "It appears you're having some difficulty controlling your boy. We have a child psychologist here. Would you like me to call and ask for help?"
In desperation, the young Mother said, "Please, do." The psychologist arrived, inquired of the problem and the young mother said, "Oh my, there is nothing I can do to get my child to obey. If you have any suggestions, I'll be happy to take them."
The psychologist said, "Wait here", and going to the little boy, took him aside, bent over and whispered something in his ear. The youngster looked up with a start, turned, went back to his mother and said, "C'mon, Mom, let's get outta here!"
Well, the change in behavior was so startling, the young mother said, "Son, wait here for a moment, I want to talk to that person." She beckoned to the child psychologist and said, "Please, tell me, what on earth did you do? I've been trying to get my boy to obey me. He wouldn't do it. You come over, say one simple sentence and he responded immediately. What on earth did you say to him?"
The child psychologist said, "Why, ma'am, it's very simple. I just leaned over and said, 'Listen here, you little brat. If you don't get out of here, I'm going to set your britches on fire!'"
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The little kid next door, a Dennis The Menace Type, came home from his first
day of school last week and I over heard him say, "Mommy, the teacher was
asking me today if I have any brothers and sisters who will also be coming
to my school."
A Sunday school teacher was discussing the Ten Commandments with her 5 and
6 year-olds. After explaining the commandment "Honor thy Father and thy
mother," she asked, "Is there a commandment that teaches us how to treat our
brothers and sisters?"
A mother was preparing pancakes for her sons, Kevin- 5 and Ryan- 3. The boys began to argue over who would get the first pancake. Their mother saw the opportunity for a moral lesson. "If Jesus were sitting here, He would say, 'Let my brother have the first pancake... I can wait.'" 
While leading a tour of kindergarten students through our hospital, I overheard a conversation between one little girl and an x-ray technician.