Does anyone relate to me?

Sue - posted on 11/30/2011

Hello i am a firm believer in the powers of Reiki, my son has cancer and i have Reiki healing sent for him every Sunday and so far he is doing really well with his treatments. I know its not technically medical treatment more holistic but when it comes to your child anything and everything is worth a try. I would seriously look it up if i were you, on Facebook there is a wonderful page where they have a Reiki rock garden and they put your childs name in the garden and send healin its with Chris and Tysha i send you love and light and many great wishes xxxx

Pamela - posted on 12/02/2009

My child is terminal. He has dissiminated medulloblastoma. He was never truely in remission but his tumors did go away for about a year. Hearing they were back and nothing could be done this time was devestating. I have been taking things day by day. I have my good days and my bad days, but right now im just trying to let him be a kid and enjoy what time he has left in this world. I don't know how much help i can be, but if you want to talk i am here. I'm sorry you are in the same boat i am in b/c i know it isn't good in any way to realize your child is going to die.

NICOLE - posted on 10/31/2009

I am so sorry to hear that .. its hard enough watching your child go through the hard ships of an illness - my daughter is 8 months old and has retino blastoma -- but it is usually very treatable -- i concur with the previous posting re. speaking with your treatment center you can also check yahoo groups or other places like that to see if they have a good place for your specific needs .. you are in my prayers - she is a beautiful girl !!

Sandie - posted on 10/20/2009

I guess I can not relate to you cuz my son is in remission from cancer,but I wanted to write to you and give you my prayers and tell you that no words I can say can take away your pain or heartbreak but I want you to know that we may be strangers but I will be thinking of you and your daughter and my heart goes out to you..GOD Bless you

Eileen - posted on 07/08/2009

Hi Janalee,

Big hugs, prayers and love coming your way from here in Florida! The ACS (American Cancer Society) has a great search utility that may help you find support both on and offline: http://www.cancer.org/docroot/com/com_0....

There are many sub groups out there aside from ACS that offer support, fellowship and advice by specific cancer type, so with the dx you will find kindred spirits. If you feel comfortable sharing the dx, it would be my pleasure to share it with my LLS and ACS teams to see if anyone knows anything that might help.

Hugs,
Eileen

Christa - posted on 06/03/2009

I can relate to you. My son was diagnosed with braincancer on the 16 th of May 2007. the doctors gave him 3 months to live. He was 20 when he was diagnosed. We never told him what the doctors said about his life expansion. I just could not tell him. He was on very heavy dose of dexamethazone. For about 3 months he could not walk. One day he ask me to help him get up. my heart broke into peaces I could not tell him that he cannot walk any more. I said I am going to make us some tea and then I will help him. I must tell you JC was a world champion powerlifter, he was very active in gym. i just spoke about what we are going to do when the cancer is gone. He was very positive that he will win this battle. We did everything we could, we event took him to Houston texas for treatment. Cherish every moment with your daughter, take lots of pictures. At one time JC told me that I don't have to take so many picture of him because he is not going to die. (I just could not tell him) Record her voice, make prints of her hands and feet. Make special moments with her and the family and record it.

I wish I can give you a big hug.

Christa - posted on 06/03/2009

Hi my name is Christa Steyn and I am from South Africa.



My son had Glioblastoma Multiforme(GBM) After the treatment(chemo, radiation, operation) I took my son to Dr Burzynski in Houston, Texas. Jc (my son) was on his treatment, but his tumor was to big. We met a Girl there with the same cancer as your child. She also received the same treatment as JC. As you know it is a very difficult cancer to treat. I am still in contact with her. believe it her cancer is gone. she was on the treatment for 2 years and are now on the oral treatment. It is worth trying.



Fight for the life of your child. I have no regrets for we did everything for JC and I took care of him myself. Treasure each moment.



Love and lots of hugs for you.

Christa

Roni - posted on 02/21/2009

Hi Janalee, my daughter Natalia was diagnosed with stage 3 anaplatic astrocytoma back in 4/08. It is in the center of her brain so it is not operable. They gave her only 6-12months to live. The radiation/chemo therapy she was intially put on had no effect and the tumor grew. In July '08 they only gave us 2 months left together but we started a new chemo treatment of Irinotecan and Avastin that has helped tremendously. The tumor is currently stable but we are dealing with all the side effects of being on steriods for so long.



Something changes in you when they give you the news that your child is going to die in the near future. You think first of all the plans and dreams you had for your child and all the things you will never get to do together. Once the numbness wears off you start to create more memories that will last you your lifetime. You try to live like a child, completely in the moment. Every moment together is a precious miracle that is to be cherished. and not taken for granted like most parents do. There is something to smile about every single day and if you can hold on to that you can hold on to hope. Natalia has a 20% chance to live 5 years and maybe hopefully more. But we don't look to the precentages we look at the days she does live and make sure she lives it to her fullest.

Michelle - posted on 01/31/2009

Janalee.... i am so sorry to hear about your daughter. This is not far from what i felt when I learned my son Dylan was diagnosed to have ALL and he is only 2 years old. While battling his illness in the hospital there was a little girl 5 months younger than my son and she was diagnosed to have a tumor on her stomach. She was diagnosed on the day of her birthday! Keep your hopes up Janalee... Don't loose hope. This little girl is friends with my son. Everytime she goes back to the hospital for treatments the nurses makes sure that they share the same room. They both like it. I will pray for your daughter. Live life one step at a time and make her day special like its christmas everyday! If you need someone to talk to feel free to message me. Good luck. Kisses to your very pretty daughter.

Roseann - posted on 01/12/2009

I understand your problem. My 2 year old is fighting neuroblastoma. She has been though chemo, surgeries, radiation, and stem cell transplant but it hasn't brought her much closer to remission than when she started. The few treatment options she has left are every experimental or noncureative. I am terrified to ask her doctors what kind of prognosis she is facing from here. She is young enough that she isn't conserned with dying, but it's hard to explain all of this to her 8 year old sister.
I spend so much time searching online for a place to fit in. Most everyone we know with a ped cancer is older and, like you said, has leukemia. I fear that I will spend her whole life worried that her death is right around the corner. No matter how healthy she gets. I wish you the best of luck with your daughters treatments and your search for someone to relate to.

Kristen - posted on 01/01/2009

This is the list I was thinking of:



http://listserv.acor.org/archives/rare-c...



But I have no idea how many children with cancer will be on that list.



Can you share what medication your daughter is taking? My son is just finishing his 6th course of Accutane/tretinoin as an experimental treatment for Glioblastoma. What is the name of your daughter's cancer? Was she recently diagnosed?



about 9 months ago we went to Camp Sunshine, which is a week-long camp for families with pediatric cancers. Of course the vast majority of those kids have leukemia, which has such a high cure rate it feels like a different world. It was good for me to meet other parents of brain tumor/cancer kids who have a much poorer prognosis. (3-5% 5-year survival) So I can imagine how much it would mean to you to find moms in a situation similar to yours.

Janalee - posted on 01/01/2009

yes she is talking freely about dying and seems to have no fear on that subject. I never told her about her prognosis however she told me that she going to fight real hard and take her pills so the cancer and tumors don't kill her. No I am not familiar with ACOR but I will definately check it out. We have a child life specialist that we see every time we fly out to Mayo in MN. Just looking for moms like me.

Kristen - posted on 12/31/2008

Are you familiar with the ACOR lists? (www.acor.org), they have email lists for a variety of cancers, and I would imagine some just for "rare cancers" Or, you could start your own group for rare cancers here?



My son has a genetic syndrome which predisposes him to cancer, and as a result of his first course of chemo for rhabdomyosarcoma developed a very deadly brain tumor, with an expected survival of 13 months. Thankfully we are 2 years from that second diagnosis and he is doing well. He is almost 8, but not really sophisticated enough for us to be talking about dying.

Is your daughter feeling well and asking about dying?

Doreen - posted on 12/24/2008

What about the social worker where your daughter gets treated? Does she not have any advice or guidance for you? Also Child Life should be able to help guide you to resources in your area. I am sorry your baby is so sick!

Liz - posted on 11/26/2008

I am so sorry to hear about your daughter. I cannot imagine what you must be going through. I cannot relate as my son has leukemia but I will definitely keep my ears open and if I talk to anyone that can relate to you, I will definitely let you know. God Bless You! If you have a Child Life Specialist at your treatment center, I would ask him/her for a support group recommendation. I am sure there is something out there.