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rfoster
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Its all about the child! Would love to talk to parents in my same shoes. Do you find yourself communicating less with people that want to help?

Explore topics in this discussion:

Cancer Osteosarcoma Childhood cancer Leukemia Bone marrow transplant Pain Bone cancer Sarcoma

22 replies

shauna

I do find myself avoiding others who would like to help. I'm not sure why but I think it's easier to handle things myself. In the beginning we had alot of meals dropped off and now my kids won't eat Italian food at all. Please don't get me wrong I was very grateful but they didn't understand what I or my family was and still is going through. I also found everytime I was talking with another person I'd get emotional or tear up but not with other cancer parents. I hope this helps in some way.
Still Expecting Miracles,
Shauna

rfoster

How old is your child? Mine was diagnosed in November right before his 18th Birthday and given only weeks to maybe months and we are sitting on almost 11 months but things aren't so good because his organs (liver and kidney) are starting to not work 100%. I also got meals from so many friends and that was great but I discontinued it because at the time odors were making him sick. We are just going through the motions of being as upbeat as we can BUT it gets really difficult at times. Thanks for your post, I hope you will continue to communicate with me.

shauna

My son was diagnosed last Nov too. He was 16 when diagnosed and just turned 17 last month. When diagnosed he was stage IV Ewings sarcoma bone cancer. He basically lives on his xbox live where people don't know he's sick. I forgot to mention because the cancer went so far lung, liver, groin,stomach, but started in left lower leg...it was amputated above the knee Feb. 08. We weren't given any time frame and he is still here too! :) It's nice to finally find another teenager parent going through the same things and close to JT's age though I wish know one ever had to be in this club. What was your sons diagnosis? You are doing everything you need to do, even if it almost kills you to be up beat. I'm doing the same thing. I don't know if this candlelighters site is local or nationwide, I'm in Delaware where are you all at? I'd like to continue chatting with you too. Do you have a caringbridge? Ours is caringbridge.org/visit/jtscott. Sorry this was so long I was on a roll. Have a great day! and make it count.
Still Expecting Miracles,
Shauna

rfoster

Hey Shauna, My son has something called "Adenocarcinoma" which is a cancer of glands. Although, they don't know where it started but he has tumors all over his liver, on the lining that covers all his organs and one module in a lung. However, last Friday they informed us that the cancer is now on a kidney too. We don't have any other options so he decided to just stay with the same chemo treatment. I hope that you and I could continue to communicate. I am in Virginia.

rfoster

Shauna sorry I forgot my son's web is caringbridge.org/visit/tbarrett

shauna

I checked out your son's CB what a fine looking boy! It's funny how they can look just fine and be really sick. How is Thomas handling all of this? JT doesn't want to talk about it too much. Has he kept in touch with his friends?

Shauna

rfoster

You're so right! "T" never was much for talking which is really strange because the other kids are SO LOUD and talkative. He doesn't talk about it either. He knows everything obviously because I am letting him make all the decisions. I wouldn't want that on my head. The good news is that usually just looking at him I know exactly what he's thinking. It is a "thing" he and I have always had. He is like my soul mate. The other kids have always been jealous. "T" has never been in time out or punished. He has never really wanted to do bad things. Its so true that quote of "only the good die young". Why is that? I did ask him if he wanted to talk about anything and he told me "no". So I imagine that he just wants to focus on moving forward and maybe too painful to think about not being around. Also, without him ever telling me, I know that he must be worried about me. He is the one child that is always looking after me. The older one, she and I get along just fine but she isn't as attentive. The younger one, well he is another story! He doesn't like me much at all. Anyway, do you have any suggestions on whether we should dig for sharing of information? Sometimes I have just thought that maybe this is the way they deal with it. What do you think?

Dreamersdream

Sometimes I find myself communicating less with people who want to help. My 15 year old daughter has a brain stem tumor, and I cry whenever I have to talk about what we have been, and are currently going through. I have been in situations where people say that they understand, only to find out that they really don't. With my last employer, I had to prove that my child has cancer. I realized that some people are so insensitive. Sometimes I don't want to think about tomorrow because I know it is not promised. The pain that I feel as a mother is 20 times as worse as my daughter feels as a cancer patient. I am on medication to cope but sometimes that doesn't even help. I have three children, and I love them more than life itself. I'd rather cut off all of my arms and legs than to see my children suffer. Does anyone elese feel this way? I know that God doesn't make mistakes, and somehow I have to make sense out of this journey.....

shauna

Before we joined this club I never knew anyone in it, but I did know parents with handicap kids and kid ill here and there. I thought I understood what they were going through but now I realize I didn't have a clue. I felt compassion and sad that they were going through whatever it happened to be. I can honestly say my heart breaks for all of the people I know fighting along side there childern, especially when they loose the fight. I wish I could bottle up the fear and feeling of emotions I had the day JT was diagnosed and share it with healthy kids parents so they too may know how it really effects us and our childern. It might even make them take the time to spend more time knowing their childern.

Ok I'm done ranting and raving now. :) I also have been completely honest with my son and told him what are options have been from the begining once he was stable then we made choices together. If he didn't want to do something it would have been his choice. Thank God he went the plan, I am so gratfule he is still with us. I hope you both have a great day and make the most of it! Dream-do you have a caringbridge for your daugther?

Still Expecting Miracles,
Shauna

rfoster

Hello there Dreamersdream, I find that my reactions are somewhat different then yours. I find that I live my days focused around my son and not about how I feel. I figured that there will be plenty of time for me to get help, cry or whatever, later. Since my son never complains, I just can't justify having any emotional breakdown right now. This is not a suggestion as I don't know that this isn't a worse deposition to have. I worry about how I will be later but I stop myself from that thought because my son is here and he's beautiful inside and out. I hope that you try to enjoy your daughter NOW. Be there for her, as this is all we can do. Seeing them suffer is NOT fun! I totally understand that. I also have three other kids. If you want to check my son's website you may at caringbridge.org/visit/tbarrett
P.S. Shauna is right about how others respond. I find that I only really relate these days to the other parents suffering in the clinic we go to every week. I have been very close to my family and I have unintentionally retreated from communicating as much. I know one of the reasons is that they try SO hard to make it better and this situation is like a train ride to HELL and you can't get off.

rfoster

Dreamersdream, I forgot something very important! God did not make Cancer. Our environment, water, and food is full of toxins that we ourselves put there. There are SO many reasons why there is Cancer but NO ONE knows exactly why. God is giving you this day! My son was only to have weeks back in November and we are 2 days shy of 11 months. The doctors said that he has out lived any of their expectations. This is a Miracle that GOD has been able to finagle. Don't forget that.

Dreamersdream

No I do not have a caring bridge for my daughter. Can you tell me what that is, and how do I go about setting one up.

Dreamersdream

Hi,
My days are focused around all of my children. I pay more attention to Britney because she is fighting this battle. I have to be strong for Britney. She is a fighter, and God is with her on this journey. She doesn't talk about her illness unless the clinic as her to speak to a child who may be afraid to undergo chemo, or to have their port access. She is a prayer parterner to many children as well as Adults. I break down sometimes because I just want all of us to live. God is good and I know that whatever happens, he never makes a mistake, I hope that your son is doing fine.

shauna

Goodmorning,

I think we all focus on the fighting child, I know the other childern and I can make it up to later (sorry excuse I know)and in time as they get older they will understand that.

I have looked at this whole things as God granting me a small miracle of time with my son. I read about parents loosing their child in minutes due to cars accidents or whatever, some never even had time to say goodbye. They didn't have the special time I have had with my son. I know him and what he is thinking almost as well as I know myself. I hope someday to be close like that with my other childern but I know it will never be that close.

www.Caringbridge.org is a free website to keep others updated about your daughters treatment. They can sign the guest book and leave her/you messages. You can post pictures, it's really whatever you make it. I wasn't very good in the begining of treatment but I do find it a good record of what happened so I can go back to reference it. Check out our son's caringbridge sites (CB) you'll understand better. They are real easy to do. www.caringbridge.org/visit/jtscott

Make your day count! :)
Shauna
PS. I can't firgure out why my type is in bold I'm not yelling at either of you and I look forward to seeing your posts. :)

ziggy

My son finally came home today from being hospitalized for a month. It's exactly 1mo. today. I have found that some of my friends sort of distanced themself since I told them what's going on. Then there are those who I don't talk to much who have been my biggest support. I can take care of my son, but it would be nice to hae someone to talk to sometimes that understands.

shauna

Ziggy,

Congrats on going home! Are you newly diagnosed or was this stay a long one? It is really hard for people to understand and most of the time they just don't know what to say to you and it makes them feel uncomfortable. I also think they don't want you to feel uncomfortable either.
What was your son diagnosed with? And when? Do you have a caringbridge?
Have a great weekend at home,
Shauna

Gordysmom

dear parents,
I'm sorry your children are going through this. I understand everything you all have talked about. We may not all share the same illness but, the horror of all this cancer and what our children have to go through is very much the same. My son was diagnosed with acute leukemia at the age of 6. He had 3 relapses and a bone marrow transplant at the age of 15. The transplant seem to have worked to cure the leukemia but, unfortunaly he got rejection about 3 years out and passed at the age of 20.
over the years we were blessed with many miracles. we also met alot of really supportive parents too. we had family for what ever reason back away. its crazy right they don't have the sick child but yet they can't handle it...lol. I must say I have had to work hard on my understanding people, family's reaction. well, all you can do is let it go. You have much more important things to tend to like your sick child and if you have more children your plate is full.
well, I just wanted you to know, I understand what you are all going through. I pray all of your children are cured of this cancer,but don't lose hope I have seen many kids survive and are now living a normal life so don't give up! I didn't for 14 years and till the last day I knew I had to let go and let my son know I would be ok. he put up one hell of a fight and at the end I told him it was ok to stop and rest now.
so God Bless you, your children and family.
Take care,
Gordysmom
http://www.angelfire.com/hero2/angelpages/gordy!.html

sunshine123

I wanted to add to this post even though my child is doing really well now,the only help I wanted was for my daughter to be well and I knew the only person to do that was God and medicine and we had to take one moment at a time because the one day at a time was not working because in a flip of a second things turned.I would lose it every once in awhile in the bathroom at the hospital,if I was not at the hospital.clinic.or lab or pharmacy or laying next to my daughter I was reading about cancer.I look back and say my God how did I do that.carebridge is a good site I did not know about it at the time but wish I would of.I also wish there would of been someone that I would of reachout to and let my emotions out because now I am not that busy these days thank god and all my feelings have been stored to blurt out.god bless everyone!do not give up!

survivor89

Hi! I am a survivor of childhood cancer and with children of my own today. I know you posted some time ago, but I wanted to share with you the importance of taking some time with your other children as well during your child's battle against cancer. I needed my family more than ever while I was ill, but what I didn't realize was that my brother also needed his family because cancer is a scary thing not only for the child, but for the siblings too. To this day my brother is still scarred by the fact he did not receive as much attention as I did. It hurts me to know he feels this way because my parents did not mean any harm, but it happens. A normal person is going to automatically spend more time with their sick child. You need to make special time for your other children...even if it is just an ice cream in their room with you and them. It means a lot and ask them of their fears and worries because they do have them. My brother would never tell me how much it hurt him and he would never treat me ugly, but its something that all parents need to make a point of. My heart goes out to you all as I have been through many treatments myself and I couldn't imagine what my family or yours must be going through. Just know that God works in so many wonderful ways and that whether you may understand why he has bestowed this upon your family, he knows you can handle it. Be strong and fight back the tears. In the end, we will all be in a better place.

Finny

My 15year old son was diagnosed in May 2009. He has ALL T-cell. We have three more years of treatment. I have received a total of 3 phone calls from my 4 sibs who all live within 20 miles of me. I know that a lot of people have trouble dealing with what to say and do. I expect my sibs to show up at a public benefit for my son in two weeks. I know I should feel grateful, but part of me just feels like they're coming because it is a public event and the community and other relatives will be looking for them. How do I handle this mess of feelings?

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