tag:blogger.com,1999:blog-18042819.comments2023-05-30T03:22:13.676-05:00Moss FamilyMosshousehttp://www.blogger.com/profile/12566080224813556865noreply@blogger.comBlogger631125tag:blogger.com,1999:blog-18042819.post-5789009772864656212018-01-07T17:33:49.478-05:002018-01-07T17:33:49.478-05:00so goodnews, 53%!so goodnews, 53%!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-18042819.post-34257403984120670512018-01-07T17:32:00.317-05:002018-01-07T17:32:00.317-05:00So awesome! 53%So awesome! 53%Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-18042819.post-89718099391621187122017-10-26T22:07:55.399-05:002017-10-26T22:07:55.399-05:00I would enjoy reading about any/all of those topic...I would enjoy reading about any/all of those topics. Katehttps://www.blogger.com/profile/02478399261719223455noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-55564315919579431892017-09-12T13:02:01.978-05:002017-09-12T13:02:01.978-05:00Hi, Willie. Can you email me at mossrenie@gmail.c...Hi, Willie. Can you email me at mossrenie@gmail.com? I'd be happy to share our experience with youMosshousehttps://www.blogger.com/profile/12566080224813556865noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-57444607878345358702017-09-12T13:00:40.702-05:002017-09-12T13:00:40.702-05:00Hi, Ana. Can you email me at mossrenie@gmail.com?...Hi, Ana. Can you email me at mossrenie@gmail.com? I'd be happy to share our experience and steps we took.Mosshousehttps://www.blogger.com/profile/12566080224813556865noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-69527571397494387072017-09-06T18:58:39.227-05:002017-09-06T18:58:39.227-05:00What were the side effects of the MEK chemotherapy...What were the side effects of the MEK chemotherapy drug your child experienced? How many time per day and for how long did your son take the drug? I am a young adult with a plexiform considering a MEK Drug as a way to shrink my tumor so I was looking into other peoples experiences first. NIH Cancer institute is too far from California so Dr Dombi and Widemann are looking into compassionate use for me as a local oncologist can take care of that. Also I know one of your blog friends Dakota. I am glad chemotherapy work for her brainstem tumor.Williehttps://www.blogger.com/profile/09102475138868536204noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-82298953123074924242017-08-24T09:48:47.819-05:002017-08-24T09:48:47.819-05:00I am a person with NF considering selumtinib a MEK...I am a person with NF considering selumtinib a MEK to shrink my tumors. What drug did your child take and what were the side effects?Williehttps://www.blogger.com/profile/09102475138868536204noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-38368319821871216412017-03-15T13:42:15.645-05:002017-03-15T13:42:15.645-05:00Hello there,
My son has a similar case and I woul...Hello there, <br />My son has a similar case and I would like to get more informations about it. Perhaps, you can guide me through steps you already had taken. I certainly appreciated it. Thank you very much. Ana TaylorAna Taylorhttps://www.blogger.com/profile/00800342474230314167noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-84436621466481471392017-03-15T13:41:34.612-05:002017-03-15T13:41:34.612-05:00Hello there,
My son has a similar case and I woul...Hello there, <br />My son has a similar case and I would like to get more informations about it. Perhaps, you can guide me through steps you already had taken. I certainly appreciated it. Thank you very much. Ana TaylorAna Taylorhttps://www.blogger.com/profile/00800342474230314167noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-4003073926016190642016-11-29T00:24:29.190-05:002016-11-29T00:24:29.190-05:00Hi there. I came across your name and your little ...Hi there. I came across your name and your little boy's story regarding the trail he has been going through. My daughter has NF1 and has a large mass in the same area your son does on his neck. My daughter has three different ones in that area as well as in the chest and close to the spinal cord. I have been searching for more info on anything else I can do to address this on a much deeper level than just monitoring her with yearly MRI's etc. I want to learn more about research and trails going on. Can you help guild me in the right direction? I would so much appreciated it! How do I find more info on the trial drug he is doing? If you are in Facebook we can connect that way if it's easier... my name is April SchweiklAprilhttps://www.blogger.com/profile/18249251122928630401noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-82466327796915738432016-09-15T20:50:27.357-05:002016-09-15T20:50:27.357-05:00I see your social media posts and get updates ofte...I see your social media posts and get updates often but i still love reading here, too. Praying with you for a successful school year for both of those sweet kiddos. Wishing I could NF walk with you this year. I can't, but we will champion you from afar. LOVE YOU FRIEND.Jenhttps://www.blogger.com/profile/16712626533152641118noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-50996313008045796902015-07-31T21:46:46.283-05:002015-07-31T21:46:46.283-05:00Renie and Philip, God has certainly blessed our fa...Renie and Philip, God has certainly blessed our family when our paths, Renie, crossed in Portland last year at the NF Walk Forum. There was some sort of festival going on, if I recall correctly, when two Facebook friends met face-to-face! Your servant's heart, your love for our Lord, and your devotion to your family have always shone through ... whether talking together, posting online or sharing ideas and stories over the phone. Blessed indeed! Thank you for reminding us how special each minute of each day is ... and thank God for the tireless angels you place in our lives!Anonymoushttps://www.blogger.com/profile/16753055413907380128noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-3529617350777382015-07-22T18:41:10.217-05:002015-07-22T18:41:10.217-05:00Thank you for this beautiful reminder. Every day i...Thank you for this beautiful reminder. Every day is a gift.Anonymoushttps://www.blogger.com/profile/09889072011710942580noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-62310739861328268522015-07-22T18:40:58.782-05:002015-07-22T18:40:58.782-05:00Thank you for this beautiful reminder. Every day i...Thank you for this beautiful reminder. Every day is a gift.Anonymoushttps://www.blogger.com/profile/09889072011710942580noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-53592151169142521622015-07-22T15:33:41.537-05:002015-07-22T15:33:41.537-05:00Touching and heartfelt. Sometimes I am such a laz...Touching and heartfelt. Sometimes I am such a lazy parent and I know the day is quickly coming when I will regret not having been more intentional while I had the chance. Thank you for sharing, and for the reminder.Stephaniehttps://www.blogger.com/profile/17696205881417676788noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-76752068244240506022014-11-06T11:52:24.924-06:002014-11-06T11:52:24.924-06:00Jenny,
Go to Bellbuckle.com's homepage, and ...Jenny, <br /><br />Go to Bellbuckle.com's homepage, and click recipes! <br /><br />Thanks for shopping at the Village Peddler. <br /><br />MelissaAnonymoushttps://www.blogger.com/profile/17161376514911892859noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-32114363791272191552014-09-09T17:51:55.382-05:002014-09-09T17:51:55.382-05:00We'll continue to pray for our sweet cousin! ...We'll continue to pray for our sweet cousin! I'm glad he's enjoying chess; we should have a Moss family chess tournament whenever you come up again. He would probably beat us all. :)Moss Familyhttps://www.blogger.com/profile/01392936806873282715noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-85114512122882548952014-07-31T12:16:45.758-05:002014-07-31T12:16:45.758-05:00Congratulations on such a deserved honor! You are...Congratulations on such a deserved honor! You are all in my prayers daily!margarethttps://www.blogger.com/profile/11310836975860914429noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-43963147167601558532014-07-30T16:06:34.604-05:002014-07-30T16:06:34.604-05:00Way to go Moss's! You have made incredibly tou...Way to go Moss's! You have made incredibly tough decisions and we are behind y'all 100%. We pray for the research to find a cure and for your family.Helenhttps://www.blogger.com/profile/02302662681657156708noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-67538931873182663522014-07-30T06:33:11.558-05:002014-07-30T06:33:11.558-05:00What a great and well-deserved away! So proud of a...What a great and well-deserved away! So proud of all the work you have done!The Youngbloodshttps://www.blogger.com/profile/06435058977027300269noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-88628298621744708662014-07-29T20:08:04.130-05:002014-07-29T20:08:04.130-05:00A well-deserved award! You are in our prayers dai...A well-deserved award! You are in our prayers daily!Anonymoushttps://www.blogger.com/profile/15800251012424895563noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-87264082883486958122014-07-29T18:12:53.439-05:002014-07-29T18:12:53.439-05:00What a great honor! Praying thanks for no side eff...What a great honor! Praying thanks for no side effects and significant results for little Phillip! Hugs and love!Connie Sormanhttps://www.blogger.com/profile/13281012396708020221noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-71151511219035587642014-04-24T20:31:51.826-05:002014-04-24T20:31:51.826-05:00WOOT WOOT! Victory for this day. Love it! and than...WOOT WOOT! Victory for this day. Love it! and thankful for boy band haircuts :) Praying always on this end for you guys.Jenhttps://www.blogger.com/profile/16712626533152641118noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-43281623473208829512014-03-24T19:54:54.074-06:002014-03-24T19:54:54.074-06:00happy birthday, sweet girl! Love your Yankee girlf...happy birthday, sweet girl! Love your Yankee girlfriends :)<br />Miss Jen, S & AJenhttps://www.blogger.com/profile/16712626533152641118noreply@blogger.comtag:blogger.com,1999:blog-18042819.post-50943644923092752472014-03-12T09:53:41.915-06:002014-03-12T09:53:41.915-06:00Praying for you all. Children with things like thi...Praying for you all. Children with things like this seem so unfair. I know God will find a way for you to cure this and move on.Anonymoushttps://www.blogger.com/profile/10998146876884553895noreply@blogger.com