We've been posting and collecting these answers for some time now....
Oh wow...where to begin. I've often thought we should all write a book.
One big thing---Don't offer advice or email information about treatment facilities, options, side effects, etc. UNLESS ASKED.
Mahala C Aldridge Dixson
As the parent of a child with cancer, I wish my family and friends would....come around more and be there like they offer to be.
That's a good one too. Often people say, "Call me if you need anything." Well, so many times we are so overwhelmed and we don't know what we need! If you have an idea--food, help, whatever--call and just ask, "I want to do ______ for you, is that ok?"
Tera Forister Lamarre
I wish people would let me be a "little down" every once in a while without telling me that because my child is out of treatment, I have nothing to worry about anymore. That I'm not happy enough.
OR....stop pretending that I am going to be "normal" again. I will NEVER be the same person I was before....
OR....please don't stop sharing things ... See Morewith me about your child, just because you think that I will think they are insignificant. Your child having tubes put in or having tonsil out is a big deal to you and I want to be there for you.
Wow! Life has changed so much because of cancer!
Stop telling me how it's important that I take care of myself. I'm focused on caring for my child. I don't care if I haven't had a haircut in 8 months, that's really not my priority.
I'm not a parent of a child with cancer, but being a Survivor...I'll put in a wish too...
I wish my family would stop telling me that what I post on MY facebook page is TOO DEPRESSING for them to come look at, that I NEED to lighten up and have fun.
What I post on my facebook page is something VERY IMPORTANT to me, something I CARE about and something I have put on MY priority list!!... See More
I'm an adult now and as such, I'm no longer forced to do what pleases my family members...I now have an extended family that I love dearly and I'm in this fight for the long haul!!
Oh man! ALL of the above and more...so much more. We actually had family and friends offer to do stuff for us and when it came right down to it, well, let's just say they never came through at all.
Danielle Murtha Leach
@Tera- you got them all right Everything everyone said is spot on.
I would say that people need to respect the fear, it is not wrong to hope for the best and prepare for the worst. I appreciated all the support and prayers, but when we came to the end of Mason's life, people were very judgemental at times of our response to his decline. We did ... See Morenot give up hope for a miracle- We just tried to let him go in peace and without pain. Palliative care is not a dirty word.
For those who have lost their children to the battle, I wish people would understand that grief has its own time table and we all move at our own pace.
People Against Childhood Cancer (PAC2)
Carla...I'm sooo sorry! I was thinking earlier about saying as the parent of a child or as a child with cancer......and then forgot.....Sorry.
Carla.....I have heard this in SO many forms. Yah, childhood cancer is depressing. Duh. Instead of just reading it, try living it people. Sorry to depress you.
Wow....that sounded a bit angry and bitter, huh? (I'm not, really...)
That's ok, really...I kinda fit in with the parent thing because I've become a voice for ALL the kiddos!!
Melina McAlwee Brown
All good ones!! I wish my family would stop telling me to "get over it and move on, it's been six years and Levi is fine now"... I will never forget, never be the same, never quit fighting - not only for Levi, but all kids. How can I go back to living like nothing happened??
As I told a coworker yesterday, when she made a comment about the gold ribbon on my office window...
"I know it's been 25 years since Rachel died, but not much has changed in those 25 years and somebody else's child is dying today. My voice is still needed so don't tell me to let it go and move on."
I wish people would stop telling me to coddle Wilson as I do. As of Dec we are celbrating 9yrs and I thank god everyday for Wilson beating cancer. Its been a rough journey and with other obstacles that have been on his road, he knows that I am there for him and always will be
Stop telling me everything is going to be all right. You don't know.
Understand that we can never be the same as before. It is life before cancer and life since cancer.
Melina, I agree. There is no way we can go back to living as if nothing has happened. It happened, and it SUCKED!!! I am SO fortunate that my child is a survivor, but what about Megan, McKenzie, Aliyah, Kiyonah, Guy, and all the other children that we got to know in clinic, and all the other clinics around the world, who did not survive!? What ... See Moreabout the long term side effects of the treatment my daughter received that we have no research data for?
It was so interesting how people I though would be right there for me were not, and people I had no idea would be there for me were!
We all have to continue to be a voice for children with cancer!
Christy Flewelling Fitzpatrick
Danielle you hit it on the head...As a bereaved Mom to cancer I wish people would understand that there is NO time line for grief and if they're uncomfortable because we're brave enough to show our actual pain, they're the ones that need to GET OVER IT, they're not the ones who had to bury their child because of cancer.
focus on what matters, and keep your opinions to yourself. The end of your child's life is not the time for someone who lives in another state to send you a note expressing (unsubstantiated) concerns about your marriage. What a way to hurt someone at the most difficult time in their life!
Tera Forister Lamarre
Oh!!!! I just thought of another one that I get from EVERYONE...even my husband!
"Stop reading other people's Caringbridge or CarePages sites.!!! They will only depress you!"
Guess what?!! These people are my family whether I know them in real life or not! I am closer to some of those families than I am with my own!
Tera Forister Lamarre
WOW! Do you think I have some pent up frustration?? LOL!
Tara Leksell Faler
I wish they would have been there more, like they are suppose to be. But on the other hand, it really showed us where we stand in these peoples lives that are suppose to care about us so much. So many of our loved ones acted as though they didn't even care about what was going on.
And now, it makes me so mad when others tell me that I am paranoid... See More and just need to let Khloee be a kid, and that everything is fine and I need to stop worrying! A lot of people just don't get it at all! People just don't understand, we can't go back to our old self, this is now our life, and yes, I do worry and yes, I do watch every move my child makes... I'm a mom, and I don't think mom's like us will ever be able to just relax.
Tammy Dionne Cancilla
Out of curiosity before you became parents of a child with cancer were you on the wrong end of this sentence.Even as a survivor now how many times were you also on the wrong end of it.
I only say this because I know I am not perfect and have probably said the wrong things before but it would not change what I said if tommorow the doctor told me one of my children has cancer or I do.
Kathy Mooney Bisignano
My family has been changed forever!! I tell everyone not to judge how we handle things,just support and love that is what we need!!
Stop telling me I am so strong. I am just a normal Mom who has to walk through this chemo world.
I agree with you Sandra I have people tell me all time I am when I feel I'm just doing what any parent would do for their child
Mahala C Aldridge Dixson
These are all so very very true. I think a lot of this stuff on a daily basis! I'm not that strong, and I'm tired of being told I'm "strong" I am not super woman, I am a real mom with a child with cancer.
I'm tired of hearing things like "Oh well you are lucky your child is just a baby going through this, he won't remember any of this and he'll ... See Morebe normal and not be bothered by any of it"
HE might not remember it, but I will remember every single detail. It will haunt me for the rest of my sons life and mine!
I too have been told to "stop reading other caring bridge pages" I quite frankly tell those people that say that to keep their opinions to themselves. Us childhood cancer moms are family, no one understand what we're going through better than another cancer family!
Jenni Cornwell Peck
I wish they would help write letters and sign the petition instead of raising barns on farmville. I wish they would understand that a week before scans I am a mess and I am not angry at them, I am afraid of losing my son.
Chris Cassinerio Hartsfield
They would understand when my heart hurts too much to talk and then I wish they would ask me how it feels to live without her and be able to handle to flood of tears .. and I wish they would not tell me she is in a better place.. :( sigh
Well, here it goes...
When Julian was alive , during treatment , I wish some family members would have given us space. I tend to suffocate and had to walk away from my own son's hospital room cuz i couldnt handle them. At times , however, I would have loved for a friend to come and spend one of those long lonely nights at his bedsite with me.
Now... See More, I wish I still had those close friends... They need to understand and accept the fact that the death of a child changes a parent and that even if we cant be the person they became friends with , we still need them . They also need to accept that we cant ever get over it.
But in the end, family is still family , you cant change that.
What you can change however is the circle of friends you want to surround yourself with in order to preserve your mental health! Being your broken self with old friends is practically impossible. Only those who have lived it can bring you the support and love you need...
I don't need to say another word....it's all been said.There are way too many of us who feel this way.
...imagine what they might need if they were in the same boat and just do it, without asking what we need. We've never done this before... how do we know what we need? But that's why I started The Brain Candy Project. :)
Mary Whitlock Prokop
It's such a difficult statement to answer in just a few words. I know when Kate was diagnosed, I lost a few of my very close friends, the people that I thought "had my back"... "backed out" when times got tough, when the treatment kept going on & on & on & on... when the support I needed was for more than just a few days or weeks or months. It ... See Morereally makes you see into other people as never before. What are people really made of... their cloth & not just their clothes. There is no going back, life is now B.C. (before cancer) & A.D. (after diagnosis).... I have a special group of MOMCOLOGISTS that help me through... I hope you all do to...
Carinne Victoria Berglund-Montgomery
God Bless you all, I have been through all of that when my daughter Victoria was diagnosed with ALL in 2001, if people could just understand what it is like.......My prayers to all of you.......
Charlene Booth Fuller
Visit us more. They act scared now that he is getting chemo, of being around hm. When he was first diagnosed many family and friends came to see us and pray with us and give me a break from his bedside during those first 5 weeks and 4 surgeries but now they no longer come around or even call and those many days of sitting by his bed get very long... See More.
I am also sick of hearing he is almost done with his chemo and then life can be normal again I don't even know what normal is anymore and the fear of it coming back or getting a secondary cancer will always be there, not to mention the fact that we won't know if he will ever walk and his back is horribly twisted and curved from the lamenectomy.
Sorry to ramble but what a great question to help us get a little off of our chests
Cindy Kelley Mays
screen every new born for retinoblastoma--simply turn the light out and look for a red reflex! if you see a white reflex get to the md asap!! how simple is that!!
loved everyone that has helped us thru it! wish there where more benefits for people with insurance-because it kills you financially!!
Janna M. Henry Gillespie
remember why we need to continue fighting. It seems that many of given up he fight or forgot the pain Gunner went through. Don't let others have to go through it too. Help me continue to fight and to help other families.
be there, help, support.....
I agree with all of the comments about how I wish that friends and family would not say or think "get over it and move on." In addition I would really like it if family and friends would just call and ask to donate to our CureSearch walk each year because they know I am still doing it and that it is important to me. I sometimes feel that I am ... See Morebothering them about it. I think that some of my friends wonder why I am still doing it. They just don't understand. It seems that the only ones that do understand are the ones that have been through it...
Tiffany Fontaine Beamer
Cindy and Janna, I so agree with you. When there is a simple screening for something like retino DO IT. And Janna, I haven't forgotten why you are fighting and what you went through with Gunner. Every night when the house gets quiet I can hear the train in the distance and say "hi Gunner." My husband always said cancer is a marathon not a sprint, ... See Morepeople forgot that. Like many have said, those first few weeks everyone is there and then it seems they either can't handle it or forget and get on with their lives.
I just want people to talk to me like they used to. Your child's broken arm is a big deal to you and distrupted your life so share it with me. The biggest thing one friend did for me when Miranda was in the heat of the battle was complain about how bad of a week she was having with typical kid problems. It was nice to have someone complain to me about "normal" stuff.
Janna M. Henry Gillespie
Tiffany - hope I get to see you tis weekend!
Tiffany Fontaine Beamer
Janna, just look for the mob of girls.
Anyone in the Nashville area join us for Hawk's Walk this Saturday.
Sandy Gordon Barker
I agree with what Brenda said 100%
Jennifer Inman Cartwright
truly get why childhood cancer is differant then adult cancer. that it is not over when chemo or radiation finishes. We have a journey that sometimes last a lifetime. And although my child may now look healthy looks can be decieving. REad my update on why I do not want a donation to ACS in his honor. Do not ignore the issue. ask me!
Tiffany Hamlett Russell
@Jennifer-truer words were never spoken. No one really understands that our kids can be impacted by cancer even after they are NED or are in remission (so many things are impacted by their treatments-growth, learning, social interactions, low immune systems, and so many more). . . that the fear of relapse is constantly with us. We participate in the ACS Relay for Life and started doing so long before our daughter was diagnosed (I have people on both sides of my family who have had cancer and most have died from it), but I also know just how little funding that they give childhood cancer. It is ridiculously horrible that they don't consider our kids to be worthy/deserving of the same kind of attention that adult cancers receive.
I wouldve loved to have been able to save my little girls life. I just wanted her to live. Thats all I ever wanted.
Join the marrow registry.
Understand that life will never go back to "normal", even when chemo is over.
Go Gold - Childhood Cancer Awareness
as the aunt of a Rylie, who was taken from us earlier this year at the age of 3, I admit I will never relate at what the battle is to the parents, but I do know about the loss of someone percious. THere will never be normal again because every day is a day without her. I do however understand the total frustration with the lack of awareness and funding for Childhood Cancer. I recently received an letter from MLB about why they don't do anything in September..what I saw was blah blah blah, what I know is I'm not done until some listens and something changes. @Jennifier - my heart go out to you, the only thing you want you can't have xoxo
Jacki Earnest Nielsen
...stop asking what they can do to help, and actually help! Our families have it hard, and many things seem to fall by the wayside. You're right Sandra, there is no more normal! So do something! Donate your time, energy, money, blood, so many options!
Lisabeth Pesch Pilot
help raise awareness, listen and do things - don't just offer - DO THEM. Childhood cancer is every parents worst fear; but don't pretend it doesn't exist. It has, it does and it will if people remain ignorant.
Not sure how to answer this... Those in our life who were strong enough to stand by our side, lift us up and do when we could not, did so and more. Those who could not even handle the mundane things in their own lives could not handle the struggles in our lives after Sean was diagnosed. I don't think others change after such a diagnosis, we just got to see them clearer. And when you need them and they are there or they are not there, you really get it. I don't think I was ever mad, maybe a bit hurt. I love those who stood with us and just feel really sorry for those who did not. Some get to reap the rewards, others are left out. All their choice!
I tend to agree with all of these! I had so many people ask "what can I do" , "call me if you need anything"...and there was NOTHING!! When I would ask for help, nothing. My family didn't come visit my daughter when she was in the hospital for treatments.
I wasn't allowed to show MY feelings about MY baby girl having Ewing's....everyone around me was allowed to cry, get upset or whatever, but me, I was only allowed to be strong. I just wish there was more....a shoulder to cry on, someone to talk to, someone who help with dinners, chores, etc, but there was nothing and no one.
Now since my daughter is (almost) 2 years off treatment, (almost 1 1/2 yrs into remission), everyone asks ," How's it feel to have a normal life again?" It upsets me sooo much when they do that! There is NO NORMAL any longer. What they consider is "normal" isn't MY "normal"....my daughter's "normal" is scans, blood work and check ups to make sure her cancer is still gone. Our "normal" is her watching her friend's play sports while she sits on the side-lines because cancer STOLE it from her!! My "normal" is praying DAILY that her cancer doesn't come back and take her from me!
I wish my friends and family would understand that. I wish people would understand that with every pain she feels, I worry more and more. I wish people were more AWARE of childhood cancer and the pain it causes to the child and to the family.
It seemed like every time I would tell my family something about my son and his condition, they would run off and advertise it to everyone, sending out mass emails and such. I asked them to stop doing that because then I would be bombarded with emails from people wanting to know what was going on......when I asked them to stop, thier reply was "It's not about you". Everything I did or asked them not to do, they would say "It's not about you." Like heck it wasn't. It all became about money too. As soon as this happened, they were doing all these fundraisers, but my sister was putting false information in the paper, and when I called her on it, they said that I needed to shut up and take whatever money I could get, and that I better not ask them for money because they didn't want to have to pay for my son's funeral. Yes, they said that. Needless to say, I am no longer on speaking terms with my sister, and I'm on barely speaking terms with my parents. My sister who also was asked to stay away from the funeral, showed up anyways. This crisis really just brought out the selfishness in my family members. It was like suddenly I became a bad guy, a bad mom because of this. I ended up losing my son this past August. They caused me grief right up to the end. I'll never understand why, never understand what I did wrong, never understand why if they hated me so much, why didn't they just leave me alone? It was like they were purposely using this event (the absolute worst time in my life) to beat me down. The biggest support were from complete strangers, and the community. People really stepped up, and I'm forever grateful for that. Now I'm grieving and alone. Nobody calls, nobody talks about him. Life has moved on and I'm lost in this place of grief.