Hepatoblastoma

Summer - posted on 07/26/2010 ( 14 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

Linda - posted on 04/30/2014

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My son was diagnosed at age 4 - Nov 1999...46 surgeries, 2 liver transplants, endless chemo, radiation, mets to lungs and brain....he is now 18, cancer free since 2005 - Praise God!...All I can say is don't give up...fight. A lot of oncologists out there give up too easily...find one that is aggresive. I even had one try to send hospice home to me before his transplant...Thank God I did not listen to him. Like you, I tried to find some positive stories out there...someone, just tell me that, although rare, there is a chance of survival.....there is....Andrew is living proof of that...email anytime...support helps us get through this...Linda (lrogers@bop.gov)...prayers for all your babies....Matthew 21:22

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.

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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Janet - posted on 07/23/2014

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Hi Rebecca
I completely understand how you feel and your completely despair, my son Harry was diagnosed with Heptatoblastoma when he was 7.5 months old. Like you we went to hospital with what we thought was a virus and ended up going to the oncology ward and staying for 6 weeks. Fast forward 4 years and he is a healthy happy little chap that is high on life! All you can do is go moment by moment in those early days and keep saying to yourself, the sunshine always comes out from the clouds, and it does! Be positive, hepatoblastoma is highly treatable. Harrys tumour was massive, it pushed his lung up to half its size and covered most of his abdomen. He had 6 rounds of chemo and a liver resection. The days are dark and its a rollercoaster but its worth the fight and never give up, gather the little stones each day and soon you will have a big rock ready to smash the battle. Id be happy to chat to you, listen to how your feeling, make sure you take care of yourself, don't blame yourself (i wasted too much time doing this)
Im in Australia ready to listen, take care xxxx Janet.

Rebecca - posted on 05/13/2014

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My daughter was diagnosed just over a month ago. Thursday April 10 2014 is a day that will be forever marked. Went to the pediatrician for what we thought was just some vomiting... 8 hours later we were admitted to our nearest Children't Hospital speaking to the on-call oncologist and pediatric surgeon. The tumor has been staged as "intermediate" or Stage 3. Hasn't spread yet, but is so large that it extends all the way across her abdomen to the left side by her spleen... I find myself struggling most with the frustration of not knowing what she wants or needs or how she is feeling; I feel like I am failing her every time she sits pointing at I don't know what, crying, and screaming the same word for everything... It devastates me more every day feeling like I am not doing good enough. I knew it would be hard, but a crazy part of me thought it would get easier as we got our feet under us and got used to our "new normal" but it just seems to get worse.

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

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

[deleted account]

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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