Hepatoblastoma

Summer - posted on 07/26/2010 ( 11 moms have responded )

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My daughter was born with hepatoblastoma, a rare form of liver cancer. She has undergone two rounds of chemotherapy, followed by surgery to resect the tumor, and two more rounds of chemotherapy. She is currently in remission. I'd love to hear from other mom's who have children who were diagnosed with hepatoblastoma, or other forms of cancer, so we can support each other!

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Ann - posted on 06/26/2013

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My son has stage 4 hepatoblastoma he was diagnosed at 10 months also I think someone said their son was too. So wish someone will see this. I don't know anyone else whose child has this cancer as stated bc it's so rare. My son had a liver resection and chemo helped the spots in his lungs but his afp is still higher then they hoped. Please email me if u get this abaker867@gmail.com

Melissa - posted on 10/19/2010

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Hi Summer! I just joined this group, so I'm really late in responding to your post! :) My son had Stage III Hepatoblastoma, dx when he was 10 months old, after 6 months of chemo, an attempted liver resection and full liver transplant, he has now been cancer free/post transplant 3 years now! :) He is a very happy and most of the time healthy 4 year old that can now grow up with his twin brother. Everyday I am so thankful that he is still with us. How is your daughter doing now? Have you noticed any late-term chemo side effects? It's always so rare to meet other moms with that have been thru this same 1 in a million cancer. Feel free to friend me or message me if I can be of any help at all! Big hugs to you! :))

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Rae Cindy - posted on 04/11/2014

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Hi heather, if you want, you can email me @rae_cj@yahoo.com I can't promise to erase your pain but I can promise you a friend you can lean on

Rae Cindy - posted on 04/11/2014

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My son was diagnosed with a Stage 4 Hepatoblastoma May of last year, just 2 days after his 3rd Birthday. My whole world crumbled that day. He underwent hepatectomy and had 50%-60% of his liver removed and also 6 cycles of chemo therapy. After his 4th chemo, his AFP level went normal but it went up again after the 5th and 6th cycles. We found out that there was a residual tumor in his lungs and needs to undergo another surgery. He had lobectomy in Feb 15 of this year is is now OK. His recovery was amazing! 3 days ago, our doctors confirmed that he is already Cancer Free. He is for strict monitoring for the next 10 years. But we are glad that he made it and we are continuing our prayers that everything from now will be fine.

Heather - posted on 03/01/2014

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Hello my name is heather My son was diagnosed with hepatoblastoma yesterday he's 15 months idk what stage he is yet he goes for catscan and mri on tuesday I'm just trying to learn how to deal with it I'm falling apart he's my life my everything and its my fault he has it because gardner syndrome runs in my family and passed down to him. i hate myself right now and I'm trying to find a support group or someone to talk to that can share there experience give me hope and insight I'm lpsing my mind :'(

Beckett - posted on 01/28/2014

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Hi Summer,
My son was diagnosed at 15 months old. He has since undergone 8 cycles of chemo and a full Liver transplant. Its been a very long road emotionally and physically for everyone in our family. I'm just now starting to reach out to other families going through cancer with their child. Please feel free to email me with any questions or "vents" you would like to share at bahoyt10s@aol.com.

Beckett

Elizabeth - posted on 10/10/2012

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Kelsey, How is your little man doing? How many more treatments does he require? Were you able to make his stay comfortable? I will add you and Carter to our church prayer group. Life sometime seems unfair and dark but remember the Lord is your strength. My daughter was born with hepatoblastoma and we just celebrated her 2nd anniversary in remission. Trust in the Lord.

Elizabeth - posted on 10/10/2012

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Summer, I pray your princess is doing well. My daughter was born with hepatoblastoma in 2010. She underwent 4 rounds of chemo, followed by surgery, and finished treatment with two more rounds of chemo. On October 4th we celebrated her 2nd year in remission. We feel blessed for the experience, though difficult, and for her healing. Thank you for sharing your story. GOD bless you and your daughter.

Kelsey - posted on 04/22/2012

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Hi my son is 19 mth old he was just diagnosed last month with hepatoblastoma he has had a surgery to remove the tumour and it went very smoothly after further studies he was diagnosed with stage three and will be starting his chemo this comming week. last week he had a 'port o cath inserted. This has been so terrifying for me and its hard to not feel like i cant do anything to help. my son carter is so strong and brave and i know were going to make it threw this. im a single young mom living on welfare his bio father dosnt even pay support...at times this seems to much but then i see carter carrying on his regular self like nothings happening with a big smile and he gives me strength to keep my chin up! He will need the 3 night chemo treatment so i was wondering what kind of atuff i can bring or buy that will take his mind off of everything hoinh on in hospital.

Summer - posted on 07/29/2010

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Aimee,

I am so sorry about your daughter! I will pray for her. What is her name? I will certainly keep her in my daily prayers. I pains my heart to hear that that the cancer she has is untreatable. Please let me know if there is any specific prayer needs you have and I will pray... that is one thing I have gotten very good at since Lylah's diagnosis.

Take care Aimee and give love to your daughter!
Summer

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Hi Summer, my soon to be 12 year old daughter has a rare form of ovarian cancer. This type of cancer is untreatable. Right now I'm a bit of a mess and don't think I can be a help to you. But, I wanted to respond with my prayers for your baby and you! I have not been in this group for long, but I have noticed that it is very inactive. No one seems to be responding to the few posts going out. I hope that is just a short faze. I pray that you find the support you need.
Aimee

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