Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Louise, I'm so very sorry to hear about your son 's brain tumor. It must be so difficult for you as a mother to see your son go through this. It sounds like he is getting good treatment. I know a bit about this -- my husband, Pete, had reoccurring brain tumors for 10 years. I have seen so much advancement in that short time . He even was on Temodar for awhile, but it was too late in the game for us. It's great that your other son was able to put together the blog site. I'm sure all of your family and friends appreciate the updates. The picture of with the eye patch brought me back to the days with my husband. He also had double vision with one of the tumors and he wore the eye patch all the time. He thought he looked cool in it. Pete had gamma knife done and it shrank the tumor and the double vision went away. I will pray so hard for you and and his wife and girls. Peace. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 The last couple months have been a whirlwind of happenings. First part of September our 42 yr old son was diagnosed with a Glioblastoma, grade IV the worse kind of malignant brain tumor. He thought he had the flu the week before and headaches and since the first CT scan showed a mass on his lift side of the brain he had surgery and has been in and out of the hospital a couple times. He is getting radiation and the chemo med Temodar and has his good and not so good days. Please remember him and his family, wife and two teen daughters in your thoughts and prayers. Fund raisers have been held to help pay for medical bills and living expenses. Our son Jim set up a website for so if you want to check it out it is at HYPERLINK " http://info-on-paul.blogspot.com/ " http://info-on-paul.blogspot.com/ We had a trip planed to Nova Scotia and the Canadian Maritimes with my sister and her husband for Oct 6-19 and just returned from there where we had a good time. It worked well to be in touch with back home via email and an occasional phone call. The day before we left on our trip had two primary teeth extracted; yes at 44 he still has some primary teeth. The dentist was able to anesthetize the areas, top left and top right, extract the teeth, did fantastic. We took him back to his home later that day and were anxious about going on the trip not only for ’s recovery but for how things were going with . Our daughter had last weekend and he had a great time with her 11 yr old daughter Faith and 5 yr old Graham. Check out the photo section under M and you will see I finally got pictures of Faith and her poster she did for the report she gave on DS earlier this year. We picked up today at work to take him for a doctor’s appt. He is looking forward to coming home this weekend where we will be going to the library book sale one of his favorite things to do. He is counting on his fingers how many books he will get. We will also be getting our flu shots and showed us how strong he will be to get that. I started to check over the posts to the list and may never catch up with that. Did notice a new member Judi, we had a friend in Chicago who spelt her name that way years ago, surely not the same person but wouldn’t that be exciting if it were. Read about Pat’s trip to Disney, so happy it turned out so well. Hope all is well with all the moves and school year for everyone. Louise Mom to 44, DS, Deaf, ASD (Mom to 6 and grandmother to 7) -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.11/493 - Release Date: 10/23/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Louise, God Bless you and your son(s). I'm so sorry to hear about . What a nightmare for all involved. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Louise, I hope that your son is doing better since the chemo.Have you ever heard of a Dr. Neal Kassell.He is in Charlottesville, VA at the University of Virginia.They made a movie about this Dr. saving a boy from England that they could not save in England because the Tumor had pearlized or hardened.He is with the deptment of Neurosurgery.If you want anymore info please let me know.I have spoken with this Dr. in regard to my own mother.Also Lance Armstrongs Dr. ,Lawrence Einhorn is at the University of Indianapolis. He loves people and even though we live in Louisville he looked over my mothers records on her lung cancer and tried to help from afar. I wish you all the best of everything. Cyndi > > The last couple months have been a whirlwind of happenings. First part > of September our 42 yr old son was diagnosed with a Glioblastoma, > grade IV the worse kind of malignant brain tumor. He thought he had the > flu the week before and headaches and since the first CT scan showed a > mass on his lift side of the brain he had surgery and has been in and > out of the hospital a couple times. He is getting radiation and the > chemo med Temodar and has his good and not so good days. Please > remember him and his family, wife and two teen daughters in your > thoughts and prayers. > > Fund raisers have been held to help pay for medical bills and living > expenses. Our son Jim set up a website for so if you want to check > it out it is at HYPERLINK > " http://info-on-paul.blogspot.com/ " http://info-on- paul.blogspot.com/ > > We had a trip planed to Nova Scotia and the Canadian Maritimes with my > sister and her husband for Oct 6-19 and just returned from there where > we had a good time. It worked well to be in touch with back home via > email and an occasional phone call. > > The day before we left on our trip had two primary teeth extracted; > yes at 44 he still has some primary teeth. The dentist was able to > anesthetize the areas, top left and top right, extract the teeth, > did fantastic. We took him back to his home later that day and were > anxious about going on the trip not only for 's recovery but for how > things were going with . Our daughter had last weekend > and he had a great time with her 11 yr old daughter Faith and 5 yr old > Graham. Check out the photo section under M and you will see I > finally got pictures of Faith and her poster she did for the report she > gave on DS earlier this year. > > We picked up today at work to take him for a doctor's appt. He is > looking forward to coming home this weekend where we will be going to > the library book sale one of his favorite things to do. He is counting > on his fingers how many books he will get. We will also be getting our > flu shots and showed us how strong he will be to get that. > > I started to check over the posts to the list and may never catch up > with that. Did notice a new member Judi, we had a friend in Chicago who > spelt her name that way years ago, surely not the same person but > wouldn't that be exciting if it were. Read about Pat's trip to Disney, > so happy it turned out so well. > > Hope all is well with all the moves and school year for everyone. > > Louise Mom to 44, DS, Deaf, ASD (Mom to 6 and grandmother to 7) > > > > > -- > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.408 / Virus Database: 268.13.11/493 - Release Date: > 10/23/2006 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Thanks Cyndi I will keep this all in mind. Louise Re: Louise Update Louise, I hope that your son is doing better since the chemo.Have you ever heard of a Dr. Neal Kassell.He is in Charlottesville, VA at the University of Virginia.They made a movie about this Dr. saving a boy from England that they could not save in England because the Tumor had pearlized or hardened.He is with the deptment of Neurosurgery.-If you want anymore info please let me know.I have spoken with this Dr. in regard to my own mother.Also Lance Armstrongs Dr. ,Lawrence Einhorn is at the University of Indianapolis. He loves people and even though we live in Louisville he looked over my mothers records on her lung cancer and tried to help from afar. I wish you all the best of everything. Cyndi -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.11/493 - Release Date: 10/23/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.11/493 - Release Date: 10/23/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Louise- I cannot imagine going through this challenge without the prayers of others. Prayer has kept me through many a dispairing moment. I promise to remember , his wife and his girls in my prayers. Keep us abreast of what is happening. Hugs, Donnell (mom to DJ-age 11) Louise & Andy wrote: The last couple months have been a whirlwind of happenings. First part of September our 42 yr old son was diagnosed with a Glioblastoma, grade IV the worse kind of malignant brain tumor. He thought he had the flu the week before and headaches and since the first CT scan showed a mass on his lift side of the brain he had surgery and has been in and out of the hospital a couple times. He is getting radiation and the chemo med Temodar and has his good and not so good days. Please remember him and his family, wife and two teen daughters in your thoughts and prayers. Fund raisers have been held to help pay for medical bills and living expenses. Our son Jim set up a website for so if you want to check it out it is at HYPERLINK " http://info-on-paul.blogspot.com/ " http://info-on-paul.blogspot.com/ We had a trip planed to Nova Scotia and the Canadian Maritimes with my sister and her husband for Oct 6-19 and just returned from there where we had a good time. It worked well to be in touch with back home via email and an occasional phone call. The day before we left on our trip had two primary teeth extracted; yes at 44 he still has some primary teeth. The dentist was able to anesthetize the areas, top left and top right, extract the teeth, did fantastic. We took him back to his home later that day and were anxious about going on the trip not only for ’s recovery but for how things were going with . Our daughter had last weekend and he had a great time with her 11 yr old daughter Faith and 5 yr old Graham. Check out the photo section under M and you will see I finally got pictures of Faith and her poster she did for the report she gave on DS earlier this year. We picked up today at work to take him for a doctor’s appt. He is looking forward to coming home this weekend where we will be going to the library book sale one of his favorite things to do. He is counting on his fingers how many books he will get. We will also be getting our flu shots and showed us how strong he will be to get that. I started to check over the posts to the list and may never catch up with that. Did notice a new member Judi, we had a friend in Chicago who spelt her name that way years ago, surely not the same person but wouldn’t that be exciting if it were. Read about Pat’s trip to Disney, so happy it turned out so well. Hope all is well with all the moves and school year for everyone. Louise Mom to 44, DS, Deaf, ASD (Mom to 6 and grandmother to 7) -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.11/493 - Release Date: 10/23/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Hi! I am new to the group. A few days ago I thought I sent an email introducing myself to the group, but think I did it wrong. Anyway, my 7-year-old daughter with DS, ADHD, and OCD was just diagnosed about 2 months ago with PDD. She also has sensory issues, mostly to noise and more. I thought she had tourettes or something and had never heard of the combination of DS and ASD. Now I am learning a lot about this from reading all your posts. Finding out we are not the only family with a kid like Janie made me cry with relief. Thank you all for sharing. We are currently trying to get the right combination of meds and are using abilify with positive results for Janie's aggression, metadate without much success for her ADHD, and cyproheptad to help her sleep. We have a sleep study scheduled for next Monday night. We live in Bonney Lake WA. We also have a 10-year-old daughter with ADHD. Both girls are adopted and we have 3 adult daughters and 7 grandkids. Louise, a few years ago my son-in-law got cancer in his duodenum. It was terribly hard on all of us to see him practically disappear from weight loss and go through chemo. Fortunately he survived. Unfortunately the marriage didn't which broke my heart, but he seems to be doing okay now and is getting on with his life. I used to listen to the song " He's My Son " by Mark Schultz and cry as it conveyed the pain parents feel when their child is seriously ill. I pray that is a survivor and his entire family, including you, get comfort in knowing that God is hearing from so many of us in your favor. It sounds like your shares Janie's love of books! Janie has a terrific sense of humor and often lies on her bed tickling herself and laughing and laughing. She also loves to tease people (though we don't always appreciate it), and is extremely stubborn and determined. She is in a self-contained classroom. They have music and PE with typical peers. I am trying to get better communication about her classroom behavior from her teacher and not too successful so far. For kindergarten and 1st grade her teacher was awesome about communications. Any suggestions anyone? - new at this and eager to learn -------------- Original message -------------- > The last couple months have been a whirlwind of happenings. First part > of September our 42 yr old son was diagnosed with a Glioblastoma, > grade IV the worse kind of malignant brain tumor. He thought he had the > flu the week before and headaches and since the first CT scan showed a > mass on his lift side of the brain he had surgery and has been in and > out of the hospital a couple times. He is getting radiation and the > chemo med Temodar and has his good and not so good days. Please > remember him and his family, wife and two teen daughters in your > thoughts and prayers. > > Fund raisers have been held to help pay for medical bills and living > expenses. Our son Jim set up a website for so if you want to check > it out it is at HYPERLINK > " http://info-on-paul.blogspot.com/ " http://info-on-paul.blogspot.com/ > > We had a trip planed to Nova Scotia and the Canadian Maritimes with my > sister and her husband for Oct 6-19 and just returned from there where > we had a good time. It worked well to be in touch with back home via > email and an occasional phone call. > > The day before we left on our trip had two primary teeth extracted; > yes at 44 he still has some primary teeth. The dentist was able to > anesthetize the areas, top left and top right, extract the teeth, > did fantastic. We took him back to his home later that day and were > anxious about going on the trip not only for ?s recovery but for how > things were going with . Our daughter had last weekend > and he had a great time with her 11 yr old daughter Faith and 5 yr old > Graham. Check out the photo section under M and you will see I > finally got pictures of Faith and her poster she did for the report she > gave on DS earlier this year. > > We picked up today at work to take him for a doctor?s appt. He is > looking forward to coming home this weekend where we will be going to > the library book sale one of his favorite things to do. He is counting > on his fingers how many books he will get. We will also be getting our > flu shots and showed us how strong he will be to get that. > > I started to check over the posts to the list and may never catch up > with that. Did notice a new member Judi, we had a friend in Chicago who > spelt her name that way years ago, surely not the same person but > wouldn?t that be exciting if it were. Read about Pat?s trip to Disney, > so happy it turned out so well. > > Hope all is well with all the moves and school year for everyone. > > Louise Mom to 44, DS, Deaf, ASD (Mom to 6 and grandmother to 7) > > > > > -- > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.408 / Virus Database: 268.13.11/493 - Release Date: > 10/23/2006 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Hi Louise, I am so sorry to hear about your son. I will remember him in my prayers. Charlyne Mom to Zeb 13 DS/OCD/ASD? Louise & Andy wrote: The last couple months have been a whirlwind of happenings. First part of September our 42 yr old son was diagnosed with a Glioblastoma, grade IV the worse kind of malignant brain tumor. He thought he had the flu the week before and headaches and since the first CT scan showed a mass on his lift side of the brain he had surgery and has been in and out of the hospital a couple times. He is getting radiation and the chemo med Temodar and has his good and not so good days. Please remember him and his family, wife and two teen daughters in your thoughts and prayers. Fund raisers have been held to help pay for medical bills and living expenses. Our son Jim set up a website for so if you want to check it out it is at HYPERLINK " http://info-on-paul.blogspot.com/ " http://info-on-paul.blogspot.com/ We had a trip planed to Nova Scotia and the Canadian Maritimes with my sister and her husband for Oct 6-19 and just returned from there where we had a good time. It worked well to be in touch with back home via email and an occasional phone call. The day before we left on our trip had two primary teeth extracted; yes at 44 he still has some primary teeth. The dentist was able to anesthetize the areas, top left and top right, extract the teeth, did fantastic. We took him back to his home later that day and were anxious about going on the trip not only for ’s recovery but for how things were going with . Our daughter had last weekend and he had a great time with her 11 yr old daughter Faith and 5 yr old Graham. Check out the photo section under M and you will see I finally got pictures of Faith and her poster she did for the report she gave on DS earlier this year. We picked up today at work to take him for a doctor’s appt. He is looking forward to coming home this weekend where we will be going to the library book sale one of his favorite things to do. He is counting on his fingers how many books he will get. We will also be getting our flu shots and showed us how strong he will be to get that. I started to check over the posts to the list and may never catch up with that. Did notice a new member Judi, we had a friend in Chicago who spelt her name that way years ago, surely not the same person but wouldn’t that be exciting if it were. Read about Pat’s trip to Disney, so happy it turned out so well. Hope all is well with all the moves and school year for everyone. Louise Mom to 44, DS, Deaf, ASD (Mom to 6 and grandmother to 7) -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.11/493 - Release Date: 10/23/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Oh, Louise: I am so sorry to hear about . Please know our thoughts and prayers are with you and your family. Glad is doing well. How are you guys holding up? Liz Louise Update The last couple months have been a whirlwind of happenings. First part of September our 42 yr old son was diagnosed with a Glioblastoma, grade IV the worse kind of malignant brain tumor. He thought he had the flu the week before and headaches and since the first CT scan showed a mass on his lift side of the brain he had surgery and has been in and out of the hospital a couple times. He is getting radiation and the chemo med Temodar and has his good and not so good days. Please remember him and his family, wife and two teen daughters in your thoughts and prayers. Fund raisers have been held to help pay for medical bills and living expenses. Our son Jim set up a website for so if you want to check it out it is at HYPERLINK " http://info-on-paul.blogspot.com/ " http://info-on-paul.blogspot.com/ We had a trip planed to Nova Scotia and the Canadian Maritimes with my sister and her husband for Oct 6-19 and just returned from there where we had a good time. It worked well to be in touch with back home via email and an occasional phone call. The day before we left on our trip had two primary teeth extracted; yes at 44 he still has some primary teeth. The dentist was able to anesthetize the areas, top left and top right, extract the teeth, did fantastic. We took him back to his home later that day and were anxious about going on the trip not only for 's recovery but for how things were going with . Our daughter had last weekend and he had a great time with her 11 yr old daughter Faith and 5 yr old Graham. Check out the photo section under M and you will see I finally got pictures of Faith and her poster she did for the report she gave on DS earlier this year. We picked up today at work to take him for a doctor's appt. He is looking forward to coming home this weekend where we will be going to the library book sale one of his favorite things to do. He is counting on his fingers how many books he will get. We will also be getting our flu shots and showed us how strong he will be to get that. I started to check over the posts to the list and may never catch up with that. Did notice a new member Judi, we had a friend in Chicago who spelt her name that way years ago, surely not the same person but wouldn't that be exciting if it were. Read about Pat's trip to Disney, so happy it turned out so well. Hope all is well with all the moves and school year for everyone. Louise Mom to 44, DS, Deaf, ASD (Mom to 6 and grandmother to 7) -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.11/493 - Release Date: 10/23/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Dear Louise, Love and prayers go out to you and your family, especially your son, . I admire your strength and tenacity so much and am glad that you and your husband had a nice vacation this month- you certainly needed one! Blessings to all of you. Best, Mom to , 3 years old DS-PDD/NOS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 Wow Louise, Nice to hear from you, but sorry about all of your struggles. Many prayers coming for . So glad that you could still make your trip to Nova Scotia and the Canadian Maritimes. I remember you talking about it at the picnic. Gail :-) The last couple months have been a whirlwind of happenings. First part of September our 42 yr old son was diagnosed with a Glioblastoma, grade IV the worse kind of malignant brain tumor. He thought he had the flu the week before and headaches and since the first CT scan showed a mass on his lift side of the brain he had surgery and has been in and out of the hospital a couple times. He is getting radiation and the chemo med Temodar and has his good and not so good days. Please remember him and his family, wife and two teen daughters in your thoughts and prayers. Fund raisers have been held to help pay for medical bills and living expenses. Our son Jim set up a website for so if you want to check it out it is at HYPERLINK " http://info-on-paul.blogspot.com/ " http://info-on-paul.blogspot.com/ We had a trip planed to Nova Scotia and the Canadian Maritimes with my sister and her husband for Oct 6-19 and just returned from there where we had a good time. It worked well to be in touch with back home via email and an occasional phone call. The day before we left on our trip had two primary teeth extracted; yes at 44 he still has some primary teeth. The dentist was able to anesthetize the areas, top left and top right, extract the teeth, did fantastic. We took him back to his home later that day and were anxious about going on the trip not only for ’s recovery but for how things were going with . Our daughter had last weekend and he had a great time with her 11 yr old daughter Faith and 5 yr old Graham. Check out the photo section under M and you will see I finally got pictures of Faith and her poster she did for the report she gave on DS earlier this year. We picked up today at work to take him for a doctor’s appt. He is looking forward to coming home this weekend where we will be going to the library book sale one of his favorite things to do. He is counting on his fingers how many books he will get. We will also be getting our flu shots and showed us how strong he will be to get that. I started to check over the posts to the list and may never catch up with that. Did notice a new member Judi, we had a friend in Chicago who spelt her name that way years ago, surely not the same person but wouldn’t that be exciting if it were. Read about Pat’s trip to Disney, so happy it turned out so well. Hope all is well with all the moves and school year for everyone. Louise Mom to 44, DS, Deaf, ASD (Mom to 6 and grandmother to 7) Quote Link to comment Share on other sites More sharing options...
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