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Been there as a mom.

Survivorsmom
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We were part of the Candlelighter's network in Salt Lake 11 years ago. We are greatful for their support during our time of need. My son had a meduloblastoma when he was 7 years old. He is now 19 and a survivor. I would like to be of support to mother's and share our story. I would also like to enlist my son (he doesn't know this yet!) to talk about his experience to encourage and support children in the fight. Thank you and bless you all in your ordeals.

Explore topics in this discussion:

Cancer Heart transplant Chemotherapy Surgery Pain Memory Fibromyalgia Medulloblastoma

15 replies

eeenic

Hi Survivorsmom,

This is my precious grandson, Aiden, 5 yrs. old. Diagonosed with Medullablastoma last year. Aiden underwent 6wk radiation and currently being treatment with Chemotherapy at CHOP (philadelphia).
Thank you for sharing your story, it certainly brings hope to all the families of cancer children. The thought of your son sharing his experience with other children with cancer is priceless. It is the gift he and only he can give, he has the medicine that will ease the mental pain of treatment for children, He is the perfect age for children Aiden's age to relate and look up too.
Thank you. Elaine

eeenic

Hi Survivormom...

please let me know you rec'd this message..I would like to talk about your son helping other cancer children with Medullablastoma..

luv Elaine

Survivorsmom

I am looking at posts now on Inspire. I will tell you our side of how we got through the treatment and I will ask Keatan to start thinking about his experiences and then I will post that.

Survivorsmom

I am sorry that I missed this post on May 5th. I check my inbox every couple of days. This might have slipped through the cracks. I will gladly correspond with you!

curejamilia

Survivorsmom...I know what you mean about enlisting our children to inspire others. Although my daughter is still undergoing chemotherapy treatments she has survived 2 cancers and a heart transplant and yes, we parents believe they have a story to tell and an obligation to help & inspire others in their journey. Others inspired us during those times and gave us that glimmer of hope. Here it is 11 years later and she is 19 and now a college student. Woohoo!!!
Do you find it hard for your son to remember his journey?? I know my daughter was 8 and doesn't remember all the things I remember.

Survivorsmom

Wow! Your story is really amazing. Sorry I am not clear, has your daughter had continual chemotherapy since she was 8? When did the cancer return? I am sitting with my son right now and I am going to take notes to put together his side of the story. Cheers!

curejamilia

Chemo course at age 8 , relapsed at age 10 and another chemo course. Tried twice to get rid of the cancer. Continuous chemotherapy since age 10 for palliative treatment. I spoke with my daughter today too and she really does remember a lot. Just hard for her to put it on paper. Maybe this is something we can do together. Cheers to you too!!

eeenic

Hi Survivormom..

Aiden is 5 yrs. old. At 4 he has surgery to remove his tumor. Immediately I started a book for him, "Journey to Recovery" I have included my updates, pictures of him with his favorite drs., nurses, other children at CHOP he met, fund raiser events, and every single email message that was sent to him with messages of hope, prayers and support. I realized he may not remember everything, and there are several painful events we are Thankful he will not remember, but the journey is important for him to know. My goal is for him to know everyone that has supported him, prayed for him, and helped him heal. My lifelong goal is for Aiden to live his life reaching out to those in need.
I believe some of the best medicine comes from the voice of one child to another. Please tell Keatan his voice would be so important to all children. I will Thankyou and Keatan in advance for reaching out.
luv Elaine, and my little 'hero' Aiden !

Survivorsmom

When I ask Keatan what he remembers, he shrugs his shoulders. He was ages 7 and 8 when he went through treatment. I am starting to come up with questions to jog his memory. This is what I have so far and will add more as I get him to sit with me. Hope this helps. It helped us to try to give him as much as a normal childhood as possible.

Keatan’s side:
What comforted you during treatment?

The hospital staff was very good at handling and treating the kids. They didn’t tell the kids things that would scare them. They were positive and cheerful. They kept us safe and happy and provided activities.

What did you do for fun?

The playroom had videos and toys and activities. There was Bingo on Wednesdays with prizes. It helped to have family come up to visit. I had a cousin, then age 13 who would stay with me and play games. The activity staff let me play video games in the teen room. My favorite blanket helped. Visits from local celebrities and visits from clowns always cheered me up. I got a lot of stuffed animals. I loved Meeko from Pocahontas and I got two really big stuffed Meeko’s. My Make a Wish volunteer brought me Lego sets like the Witche’s Castle. My Aunt brought me maple bars from Sconecutters. I really liked it when Mom or Dad could spend the night in the room.

What did you do to pass the time?

I played checkers, I always beat mom. We made a game out of waiting for the elevator. We made informal bets on whether elevator A or B would come to the floor first. I really loved the game Sorry! I usually won. I played computer games, I really loved Putt Putt games about a car that uncovers hidden items. Mom and I watched a lot of movies together and Disney Channel.

Any special memories?

I remember Halloween in the hospital going from room to room getting small stuffed animals and candy and toys. One of the male nurses dressed as Dorothy, hairy legs and all. He had long hair so he could braid it on both sides. He carried a stuffed dog that looked like Toto, he even wore red shoes.

Above all we tried to find ways to laugh. At things that were corny or stupid or just plain silly. We once had a pizza party with cousins which was probably against the hospital room visiting limit but we laughed and smiled a lot.

Sending hope and happiness: Keatan and Carolyn

eeenic

Keatan/Carolyn, What great stories..children and enjoyment haven't changed much in years. Aiden loves the same things at the hospital, he talks of the fun nurses, his game of choice is Candy Land, and like you Keatan he ALWAYS wins !! He loves the playroom, guitar hero one of his favorites, met a really good chemo friend on stage..haha Thankyou for sharing, just this short version of your journey made me smile, I can only image what it could do for children that are traveling the journey today.
Thankyou for making time in your life for others..
Luv Aiden Nichols, 5...and mom-mom.

Survivorsmom

Glad to make the time. Those fun things were helpful to me too. I wish that I had a picture of the male nurse dressed as Dorothy. It was such a comic relief! I will hope to get more posted within the week. Take care! Carolyn

Mommytothreeboys

Survivorsmom,
Thank you for sharing your story. So often I read of the children who don't make and it is so nice to know that your son is doing well! My little boy was diagnosed a year ago this month with Medulloblastoma. He was only 2 years and 4 months at the time of diagnosis. He finished treatment last Oct. So far he remains in remission. I know he is going to be fine! I think the hardest part of this entire experience has been to watch my sweet little boy endure the treatments designed to hopefully rid his body of cancer and not be able to take the discomfort from him. He is my hero! Again thank you for sharing your story, I know it will give to other mothers in this situation hope that it is possible to beat this cancer. Take Care and God Bless.

landrey

Thanks for your encouragement with Medulloblastoma. It is so neat to hear all the good stories, too.

Blessings!

Survivorsmom

Sorry I missed this in June when you posted. I get so much going on. I have 4 boys and 1 surprise girl. It's quite a handful with boys isn't it?? Thank you for your blessed words. I remember too how hard it was for Keatan to go through procedures. He had to have feeding tubes, everything tasted like metal after treatments, he didn't want to eat. Those tubes fell out or accidentally got yanked out too many times. That was the hard, watching the tube pushed down his nose, I held his hand and cried inside. We finally talked the nurses into okaying a tube with a baloon in this stomach. (now he has a second 'belly button' from the hole cut there) It was worth it to do that even though that was yet another surgery. A couple of times the balloons collapsed. Our little ones go through a lot don't they and can still shine and smile when it's over. Amazing.
Continued blessings for you and your family.

Survivorsmom

last post in reply to mommie of three. Hope it is inspiring to others too. The positive posts help me too. I get discouraged at times with so much work to manage the family and I have had fibromyalgia for 10 years. (I just noticed a support group for my condition, that will be helpful). The positive posts remind me that I made it through such a difficult time with Keatan's illness and that if I made it through that, I can make it through the rest of it all. Thank you.

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