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Comments by sarah lees on Friday, July 03, 2009 IP Logged
my heart goes out for you,i had same situation on 25 5 09..x x
United Kingdom

Comments by maria cristina gennari on Thursday, June 18, 2009 IP Logged
reading your story it means to me to read mine.I am the mother of Alice, she was born on the 8 of november of 2006 a she had a SCT of 20 cm of diameter.Now she is a Fantastic Baby of 2,5 year she and all thank to the doctor of Gemelli. Hospital in Rome!!!If you have any questions, suggestions or comments or otherwise want to talk, please email me at cristina_gennari@hotmail.it
I thing that's very important wryte our experience because we can help other parents who nead this.Cristina
Italy

Comments by AMI PRICE on Thursday, May 07, 2009 IP Logged
I AM TRULY MOVED WITH LOVE AND COMPASSION ABOUT YOUR FAMILY'S JOURNEY. THANK YOU FOR SHARING YOUR STORY.
United States

Comments by Clelia on Thursday, April 02, 2009 IP Logged
Thank you very, very much for the strength and the courage you decided to share. What you have done with your words and experience is very brave and touching, comforting and moving. A friend of mine, 22 weeks pregnant, has been told yesterday that the baby boy she is expecting has SCT. I arrived here looking for some infos to give her. Thank you again, I hope everything will be fine for all the children and the families who have signed the guestbook. I will say a prayer for all of you.
Italy

Comments by Elizabeth Denyer on Saturday, February 14, 2009 IP Logged
I posted message quite some time ago about my son who was born at 32 wks with very large SCT. This was removed at 2 days old. This was discovered in my pregnancy and prognosis was not very encouraging. In fact one doctor was pushing very hard for a termination. Im happy to report that my son, Luke, is now over 3 years old and has absolutely no medical problems. Anyone who would like to chat to someone in UK who finds themselves in similar situation please feel free to e-mail Elizabeth.denyer@yahoo.co.uk
United Kingdom

Comments by Kristine M. on Saturday, February 07, 2009 IP Logged
Thank you sooo much for this site. I am 19 wks pregnant and our baby girl was diagnosed with SCT just last week. We were given minimal info but it seems to be completely internal but not attached or obstructing any other structures or organs at this point. We were also offered the option of termination but have strongly opted against it. Fetal MRI is pending for more answers. But our OB and perinatalogist seem to not have much if any experience with this at all.
Thank you for your words of encouragement and the beautiful pictures. May you and your family continue to be blessed.
Anyone in a similar situation please email me at kristine810@yahoo.com
United States

Comments by Dave wallace on Tuesday, February 03, 2009 IP Logged
Our daughter Carys was diagnosed with an SCT at her 20 week scan. Subsequent meetings with the surgeon at Alder Hey Hospital Liverpool served to terrify us about what would happen. Throughout the pregnancy the tumour grew very very slowly, and the obstetrician was very pleased with the babies progress. In fact it was so small, that my wife nearly went full term and was able to have a natural delivery. After the prognosis we had received this was amazing. The tumour was both internakl and external and presented as a small bump on her bottom. 1 week after being born Carys went for her surgery which took about 4-5 hours. The surgeon did a fantastic job and she now has only a small scar (largely hidden between her cheeks!) The staff at Liverpool who looked after her while she recovered were also amazing. 1 week after her surgery and at 2 weeks old she finally came home. 3 and a half years later hse has no ill effects. I wish we had found this site a few years ago.
United Kingdom

Comments by Brenda on Thursday, January 15, 2009 IP Logged
My daughter was diagnosed with Stage II SCT at 34 weeks gestation. She was delivered at 36 weeks via emergency C-section. Her tumor ruptured in utero and was bleeding out. She had a resection at birth and remained in NICU for 17 days. She came home and all was well until 6 months when a malignant re growth was diagnosed(stage 4 malignancy, it had spread to lungs). After 6 months of Chemo and 2 surgeries she is now a healthy and active 3 1/2 year old. She still gets scans and AFPs every 6 months but for the last 2 1/2 years all has been fine. With her everything was always a worse case scenario but I am thankful for her and want everyone to know it can be okay. Keep the Faith.
United States

Comments by Pastor Alan Youngblood on Monday, October 20, 2008 IP Logged
Michael and Ivana,
I am deeply moved and touched by Elijah's story. I am moved to tears. It is incredible what God has brought you through. Your family is a family of heros. Thank you for sharing your touching story. Thank you for the courage and strength that rises up as we read this powerful testimony. I look forward to getting to know you and your family. God Bless you!! You are a beautiful and inspiring family. This story must be told.
Sincerely,
Pastor Alan Younglbood
Faith Outreach Church
Winter Park, Florida
United States

Comments by Patty on Thursday, October 09, 2008 IP Logged
Hi, I'm an adult looking for some help. I believe this is the illness I have. I'm 54 years old and when I was born with a "lump" by my tailbone no one knew what it was. I had the "lump" removed when I was 21 and the drs. still weren't sure what I had. Recently I have had several surgeries including a total hysterectomy. I just had another scan done and I have another mass. The one by my tailbone grew back and now they tell me it's inoperable. If any one knows of ant adults going through this please have them email me. pattycfk@yahoo.com. I pray for all of you and your love ones.
United States

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