On May 13, 2015 Steve received the results from his latest scans....NED....No Evidence of Disease!!! Steve's doctor, Dr. Patrick Hwu (MD Anderson), has now suggested that Steve move to 6 month scans. He is confident that Steve's melanoma will NOT come back, and in the event that it does, there are so many things they could treat him with now that they didn't have when he was diagnosed in 2012. While this is extremely comforting to hear, we all know that the "black beast" can always come back. We actually know several warriors that have went 2+ years being NED and then had the melanoma return. But, we like to live life like melanoma is behind us. While we will ALWAYS be melanoma advocates, we just want to LIVE! We have been enjoying traveling, hanging out with friends and family, settling into our home that we bought last year, watching our 4 year old "graduate" Pre-K and just everyday "life" stuff.
As you may have read in my last blog, my older daughter, Sadie was diagnosed with mosaic Turner Syndrome in December of 2014. All of her medical exams turned out great! She has none of the problems (as of yet) that many Turner Syndrome patients have (heart, kidney, hearing, etc). Sadie is 4'8" and will not grow any taller. That is the average height of a girl/woman with Turner Syndrome. We took Sadie to a reproductive endocrinologist regarding the fertility issues that Turner Syndrome causes. Sadie's lab work showed her to be in pre-menopause (at age 13). We quickly got her started on fertility medication for egg retrieval. She has been through 2 cycles/retrievals. Each retrieval yielded one mature egg able to be frozen for future use. So, she currently has 2 frozen eggs and will likely start another cycle for another attempt sometime next month. There is a 3 day Turner Syndrome convention in Kansas City later this summer that we are considering attending. Being such a rare condition, we are hoping to meet some other girls her age that she can keep in touch with over the years.
Please be patient with my lack of updates. I will try to update more often, but they will likely just be updates on LIFE :) Like I mentioned, we will ALWAYS be melanoma advocates. I still advocate weekly (some may feel like it's daily) on my Facebook page, we have a walk supporting AIM at Melanoma coming up next week in Galveston (feel free to donate here), we are attending a melanoma symposium at MD Anderson in August, we have the AIM at Melanoma walk in Houston in September and I was recently contacted by a very large pharmaceutical company to work with them on some melanoma awareness campaigns. So, we are still very busy with the melanoma world!!!
P.S.
Hi! I'm so encouraged to see him doing well. How are things going now? I've got an appointment with the doctor in a week as I have swollen nodes also. Warm Regards, Brian.
ReplyDeleteFantastic news. Gives us hope as we begin our journey
ReplyDeleteThank you for sharing story! Thank God for such a good outcome! I'll be having a melanoma excision on my neck in January 2017! Please keep blogging about your family! Blessings!
ReplyDeleteHi so happy I have read you blog and so happy you as a family have had great results x my story well noticed my mole on lower back had changed to a dark colour went to see my go on the Friday and she said it needed seen to for photos she went on call to hospital as I sat ther and I had to go for them on the Monday morning as I did got a call that Wednesday to go in and she dermatologist which o did to my shock there was a picture on the screen I asked is that my mole because my mole was small she said yes to my fear looked horrible she proceede to go over all my moles and said in the next half hour wee are going to cut this mole out and you will have stitches and quit a big scar I said what a was in shock got it done and I am waiting for results she said I had all the 5 signs of melanoma to my shock this has been the longest two weeks two days still waiting on results frightened is an understatement fingers crossed
ReplyDeleteThe wait is the worse! I hope by now you have gotten your results and everything is going well!
DeleteGood morning I am writing after after reading your story,I have been praying daily for my mother, who was recently diagnosed with bone cancer, she's a very independent, and full of life person, who has just had what seems life snatched from under her, and have heard so much about Anderson are they really as good good as I have been told, I really have to do whatever it takes to try to give my family some hope and our mother the very best chance we can,she's always been the best mom anyone could have,,and the thought of her not being around is very heart breaking for me as well as my other brothers.
ReplyDeleteI'm so sorry to hear about your mom. I know it's scary. Yes, MD Anderson is fantastic. People travel from all over the world to come to MDA. I wish you and your mom the very best. 🙏
DeleteI would like to ask any and everyone who reads this to pray 🙏, for my motherr, and our family, that God gives my mom favor, as she goes next week to find as to the stage of the cancer and best treatment options.
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