Any moms of kids with cancer out there?

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Permalink Reply by Jackie on March 19, 2008 at 2:50pm

I'm in Pink Tutu. I have a daughter with a brainstem glioma. I would love to know about other's experience with this type of cancer (what they have experienced along the way, tips/tricks, how they told their children they had cancer, etc.)

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Permalink Reply by mary on April 27, 2008 at 8:59am

Hi Ladies, My 14 year old son Isaac was dx with ehe of the liver and lungs in November. It is the same type of cancer that kris c
Carr has. Chemo and radiation have not been proven to work with this cancer. We are in a wait and see mode at this time. Most of his liver is involved and we are trying to decide if he should have a liver transplant. He looks so healthy and is getting ready to start baseball this week. He will get his next cat scan on May 16 and then we will see. I also was dx with stage 1 breast cancer 3 weeks ago. A dx I will gladly take if we can find a treatment option for my son. good luck to you and your children.

Mary

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Permalink Reply by pinktutumama on April 27, 2008 at 3:36pm

Mary,

Thanks so much for your post. Good luck to you and your son as well. My thoughts and prayers go out to you!

Tracy

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Permalink Reply by treeluv on May 26, 2008 at 12:29pm

wow! i was so comforted to find this group! it feels so good to share my heart from one mother to another. my son, tyson, who is now 18 y/o, was dx with pelvic rhabdomyosarcoma when he was 7 y/o. he lost his bladder and prostate and is now 10 years cancer free! it has been a long and difficult journey, paved with both sorrow and joy! he has had multiple surgeries due to losing his bladder. it has made life challenging for him as his urostomy bag leaks and breaks frequently. yet he goes to school and works and plays like any other kid! we are just so grateful that he survived!

i have known several children with wilm's tumor's. one of my girlfriends from high school and i were pregnant together (when i was carrying tyson) and her daughter, tara, was born with wilm's tumor. she had her kidney removed as a newborn and had chemo and radiation and has done great ever since! then 7 years later tyson was dx, which we found so strange since we had gone to the same h.s. and had been pregnant at the same time. now tyson and tara go to high school together and are great friends! alot of the children that were being treated along with my son went thru treatment and walked away. my son unfortunately had residual issues due to losing his bladder and prostate yet we are so grateful that he survived to have these issues. everyone i know of that had wilm's is doing great! we live in california near LA and tyson had his treatment at Children's Hospital Los Angeles. we had a hard time finding a network or support group in our area. we eventually did find a support group that we love but it is an hour drive from here and it is difficult to get to many times due to daily responsibilities so i understand your frustration with finding a network pinktutumama.

i am so sorry that you and jackie and mary have been drafted into the world of childhood cancer's. it's a world i did not know existed before. and mary i am so sorry about your dx as well. i can completely relate to your willingness to go thru treatement for your son. my husband and i would have gladly traded places with our son, we offered our bladder for him also but that is not something that is done medically at this time. i do have a friend whose daughter had a liver transplant and she is doing great! it does require alot of medication and a watchful eye so i can certainly understand your apprehension, especially since your son is asymptomatic. it is so painful to watch your children suffer. it is difficult to accept that this is their path and we are there to be their advocate and caretaker and guide. this process takes what i call an "active-surrender".

we are sister's in a club that no one wants to join! i am so grateful to have found you and so grateful to pinktutumama for starting this group. i am happy to discuss any and all of my experience~

peace, love and a mama's heart,

kelly

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Permalink Reply by mary on May 29, 2008 at 7:16am

Kelly,

Thanks for the great post. I'm glad your son is doing well. My Isaac is graduation from 8th grade this week. The last 6 months have been an experience for us. He is so positive and is feeling well. The doctors are allowing him to play baseball so he is happy. He had a ct scan a few weeks ago and everything is stable. So He gets 12 more weeks of no treatment.

I think the most difficult issue with his cancer is no real treatment options. Chemo and radiation don't work. Many people find the tumor and do nothing but wait and see. One patient we know of has had his liver tumor for 20 years with no treatment. I just wish we had a clear cut treatment plan. It's like someone has thrown a bomb into my house and I am just waiting for it to go off.

I am starting radiation on Monday just in time for summer vacation for the kids. I should be done in mid July so my husband and our three kids can spend some time having fun.

Mary

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Permalink Reply by pinktutumama on May 29, 2008 at 11:14am

Hey Mary,

I'm so glad to hear your son is feeling well! That makes a huge difference.

I can to some degree understand the challenge in having no treatment options. While it is not the same, I felt that same discomfort in "doing nothing" once Grant's chemo ended. I started searching for things that I can do to keep the cancer away -- diet, staying away from DEET containing bug spray, etc. I realized I could easily head down the psycho path if I didn't stop myself. As a result, I paid attention to the small things I could do, and gave the rest to God, the Universe, whatever power that sustains us all. Kelly's description of "active surrender" resonated deeply for me.

I hope you're doing well with the radiation. I'm sending lots of love, light and positive vibes your way!!

Tracy

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Permalink Reply by pinktutumama on May 29, 2008 at 11:09am

Hey Kelly,

Thanks so much for your post and sharing the story about your son. You nailed it when you said we're in a club no one wants to join. Like it or not, we're all here together and can draw from each other's strength and hope.

I love your description of "active surrender" -- such an oxymoron, but completely appropriate!

Best to you and yours,
Tracy

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Permalink Reply by treeluv on May 29, 2008 at 2:20pm

hi fellow companions traveling on this journey!

mary ~ i can only imagine the internal frustration at having no treatment options or active plan for treating the cancer isaac has. i do know that most people, myself included, looked feverishly to that "plan" for something to DO and something to focus on, yet it can be a very false sense of security. we think we are doing something so it feels better to us and yet there are times when tumors grow even during chemo, and there are times when tumors shrink without chemo and/or radiation. after 6 months of chemo it looked like my son's tumor was growing so they performed a radical prostatectomy to remove his prostate and bladder, which was their last resort treatment. after going to pathology they discovered that the tumor was actually dead! who knows why it appeared to be growing. i can only trust that that is what the doctors needed to see to make the decision that was meant to be for my son. so really we are all, every living being, on a wait and see plan in life. all any of us have is this very moment. other people whose children don't have cancer, or who don't have cancer themselves, have a false sense of security because anything could happen to any one of them at any moment! princess diana died when my son was in treatment and i thought to myself "even money, body guards and being royalty can't protect you from the realities of life". i think the type of cancer that isaac has must cause you to live in the moment and be present more than most any disease. for today he is feeling well, for today he is excited about playing baseball, for today you can smell his head and kiss his sweaty cheek, and really that is all any of us have, a s much as in our humanity we would like a guarantee.

congrats on his graduation! what a great milestone!

i pray that you would feel strong and energetic even while you are getting radiation. i pray that your family would rise up and call you blessed and that they would care for you on a practical level the way you have taken care of them all this time.

tracy ~ i felt scared when tyson's chemo ended too. so i can only imagine mary's angst at not even having some chemo to rely on. how crazy is that that we would be wishing for chemo, yet we want something, anything, that will help us fight off this toxic thing trying to take our baby's life! you are so right that we need to do the things we can and leave the rest to God. in every area of our life! i'm glad you resonated with the "active surrender" phrase! it does seem like such an oxymoron and then when you think about it it really represents the balance we need in all areas of our lives, the yin and the yang.

take care my mama's-heart-sisters~

with peace, love and grace,

kelly

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