CancerCompass message board discussion started by Misti H. on 10/25/2002 http://www.cancercompass.com/message-board/message/all,471,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My 8 yr. old son was diagnosed in June with a Pontine Glioma high grade. I would appreciate any information about treatments, etc. that anyone may have or have experienced. Misti H. Fri, 25 Oct 2002 00:00:00 GMT My 7 year old granddaughter was diagnosed with diffuse pontine glioma in February of this year. She began 6 weeks/5 days a week of radiation accompanied by decadron, zofran ad pepcid, if needed. Once completed, her parents met with a group at Dana Farber to search out a study. They would not accept her until the tumor was again actively growing. Her follow-up MRI indicated that the tumor had decreased in size - from 2.5 centimeters to 1.5 centimeters and should continue to shrink even more. Dana Farber recommended several alternative therapies and her parents went with temadar, celebrex, zofran, bactrim and pepcid. It is a 28 day cycle with temadar taken five days a month, bactrim three days each week, celebrex twice daily and zofran when needed. Once beyond the radiation and decadron, which had disastrous side effects, she has had a fairly stable five months. She lost all the weight caused by the steroids, her hair has regrown in the radiated areas, her strength is good, as is her appetite. She continues to attend school. Within the past week, she has experienced dizziness, minor headaches, and has now gone to closing her right eye, because she is beginning, once again, to have double vision. All of these symptoms are not good. She is scheduled for her 3rd MRI this Saturday, and I don't expect the results to be good. My heartfelt prayers are with you because no one who has not experienced an illness of a child, of this magnitude, can really understand what the family is going through. Enjoy each day that you have, because each day is a precious precious gift. Patricia Mon, 13 Sep 2004 00:00:00 GMT My 4 yr old was diagnosed two weeks ago. He starts radiation and chemo tomorrow. I am interested in anyone with similar stories or anyone who would like to share their experiences. Dr's tell me this is very rare and uncommon and I don't have much information. Please help with prayers for Jayden. Jaydensmama Sun, 06 Mar 2005 00:00:00 GMT My son was diagnosed with a diffuse pontine glioma 9/26/2004. We completed radiation and are currently doing chemo. He is doing excellant! I have a lot of information. Cams Mom Wed, 06 Apr 2005 00:00:00 GMT Carla, I am excited to hear that your son is doing well. My son was diagnosed with a pontine glioma on March 23, 2005. We are currently in the middle of radiation and Temodar, Zofran and Decadron (which we are tapering). Can you give me some more info? Justis is also doing well considering all he is going through, no real side effects other than tiring easily and feeling more tired than usual. And of course the weight gain from the Decadron, which is one reason we are tapering it, so they won't have to make another mask for radiation. Any info or encouragement is greatly appreciated. All of the info I have gotten so far has been dismal. Thanks in advance Sonya Justiswaynesmom Tue, 19 Apr 2005 00:00:00 GMT Hi, Your message says you have info on this please give me all the info you have. Leslie Spongebob Tue, 03 May 2005 00:00:00 GMT Cams Mom, My 11 yr old son was diagnosed with dpg on 3/11/05, he is being treated at St Jude, finished with radiation and is on a clinical trial taking Zarnestra (aka tipifarnib). So far he's doing well, only time will realy tell, but your message said that you had a lot of information and as you've been reseaching for longer I would be grateful for your knowledge. One thing we are doing is paying close attention to nutrition, something that is overlooked by conventional doctors and we feel very important, we have found a nutritionist in Utah that specialises in brain tumors and specifically gliomas. Max's only symptoms so far are double vision and a very slight movement on right side in certain tests. Look forward to hearing from you. Thanks Dpgmom Fri, 20 May 2005 00:00:00 GMT My 7 year old daughter has been diagnosed with DPG on march 14/2005. We have just finished the first set of treatments with Radiation/Chemotherapie (temzolomide)/decadron. The weight gain has been a very big issue and the mask had to be replaced once, by the time of the last radiation treatment even the second mask had become too small. We are slowly decreasing the decadron with hopes that none of the symptoms get worse, in which case the decadron would be increased again. I would love to hear from other families that have children diagnosed with DPG and find out about their experiences with treatment. Sunnyblueskies Sat, 21 May 2005 00:00:00 GMT Hello Petra: My name is Maria. My 5 year old son was diagnosed with a DPG on November 14, 2004. We went through 6 weeks of radiation and temodar everyday along with decadron, zantac, and diflucan. Now that we are passed the hardest part of treatment I feel like we have hit an oasis. He is doing great the tumor was 5 cm in Nov. 2004 now its shrunk to 2 cm. He was able to finish the last part of school which I was so glad. As for my personal journey through this I was able to find a great counselor and I am on antidepressants to help me get through my lowest times. My son is being treated at All Children's Hospital in St. Petersburg, FL. We have also made a website to let our friends and family know how he is doing it's josiahupdates.com Pillar Wed, 08 Jun 2005 00:00:00 GMT Since I posted the last message unfortunately Brandy isn't doing all that great. We tried to wean her off of the decadron because her weight gain was just getting too much of a problem physically for her. But now her symptoms have come back worse then they ever were, daily headaches, loss of balance, and she did gain more weight nonetheless. We were called in yesterday for an unscheduled MRI to find out what is going on, but do not know the results yet. I'm bracing for the worse. Did anybody try out some alternative therapy's and felt that they were worth while? Sunnyblueskies Fri, 10 Jun 2005 00:00:00 GMT I'm so sorry that I haven't responded. I've left so many messages places. My son's webpage is www.caringbridge.com/ct/cameron. I can be reached directly through that page. I will talk to any parent that is going through this with me. The botttom line is that there is no cure. There are a few new trials out there. I keep going based on the fact that there are so many diseases that had no cure one day and curable the next. Tomorrow might be our day. My faith in God helps the most. He knows me better than anyone. We will get through this! Cams Mom Tue, 12 Jul 2005 00:00:00 GMT Hello My name is Tabitha and I am the mom of an angel named Samantha.(www.smtg.org) Sammy was born on Dec 31, 1996 with big blue eyes and a great smile. We were told the terrible news about her tumor on Dec 2, 2004. While in Texas Samantha went to heaven on July 2, 2005. She fought the tumor with all she could plus some and every day she smiled and never complained. Kids are not affraid of anything. Sam is my hero and there is nothing that I cannot do now. I will continue to try to be in contact with families with DPG. Please let me know how your child is doing please? God bless all, Tabitha Samanthamae Mon, 15 Aug 2005 00:00:00 GMT Hi My heart and prayers go out to you and your grandchild. My daughter went to heaven on JULY 2,2005. She was amazing through the whole sickness. She never really knew what she had, because we felt that at 7years she probably would not understand and no child should have to worry about life an dealth. I would love to her from you or the mom. God bless Tabitha(www.smtg.org)daughter web site Samanthamae Mon, 15 Aug 2005 00:00:00 GMT Could you tell me who your nutritionist is in Utah that specializes in DPG? My 5 yr. old grandson was just diagnosed, and we are researching all possible options. Thank you so much...and our very best wishes to your son, for his full recovery. Mary W. Starbeam Fri, 19 Aug 2005 00:00:00 GMT Hi, sorry it took time to reply, the nutritionists name is Jeanne, www.nutritional-solutions.net. I have found her to be a very kind person who does not claim to be able to cure this (as many alternative treatments do) but to keep my son as healthy as possible through this and hopefully buy him more time, she also provides a list of alternative treatments that she has had experience of which I found very interesting. One of the reasons I like her is that she is so much more knowledgable on the fringe treatments available and what she doesn't know she'll find out. She specialises in these kind of tumors which also includes glyoblastomas so she is not that specific as to just do DPGs in fact not many of her clients do have DPGs (but there again there's not too many out there anyway). My son, Max is currently doing well, still taking the Zarnestra which is making him throw up most mornings but he improves as the day goes on. He finished his radiation 3 months ago and his tumor has shrunk by 6mm (another 2.4 cm to go), still has double vision. He started school 2 days ago, I just make sure he has a seat by the door and a barf bag! Today life is good. Dpgmom Wed, 24 Aug 2005 00:00:00 GMT I am so sorry to hear about your granddaughter. I pray for each child I hear about, and the family. This is a very difficult thing to face and watch. My niece was diagnosed with a pontine glioma June 7th of 2005. She has completed the radiation and is now resumed the chemo which is Temador. Her tumor shrunk 1/3 of the size and they say should show more shrinkage with the next MRI. Her symptoms have improved right much for a period of time. Now she is experiencing double vision again. They say it is because of them reducing the steroids too soon. I don't know and it worries me alot. They had to put her back on a dose of 3 mg. of steroids. I hope that is all it is. I hope things will be alright with your granddaughter. I hope the MRI will show no growth of the tumor. My prayers are with your family and your precious granddaughter. Sincerely!!!! Taytay Tue, 06 Sep 2005 00:00:00 GMT My niece has a pontine glioma. She has finished radiation and is on her second round of chemo. The chemo is Temador. They reduced her steroids to 1.5 milligrams. They had to up this again because she was experiencing the double vision again and her walking was off again due to the double vision. I would like to ask you a question if I may. Will the reduction of the steroid cause double vision, or is that strictly related to the tumor growing. She is so swollen in her face. Can alot of fluid cause the double vision. What has your son been through and when you say he is doing really good can you give me details if you don't mind.I hope I am not asking too much of you. I want to see how much he improved to see if my niece really experienced a good amount of improvement. Thank you so much, Tammie I truly do hope your son will continue to improve. Taytay Tue, 06 Sep 2005 00:00:00 GMT How long did it take your son after radiation to start getting better? I'm very glad for you that he is getting better. My prayers are with you. Tzahn6 Wed, 14 Sep 2005 00:00:00 GMT My son Cody was visiting his grandmother in Bethal Alaska when he started to drool a lot and then he has trouble with his food. On the 25th of Sept his Grandmother took him to the ER in Bethal AK they run test on him and told his grandmother that they were going to have to fly him out to Anchorage AK. So he gets to Anchorage and they did a CAT scan and a MRI. thats when they found it.. They diagnosed Cody with Pontine Glioma on Sept 25th 05. I flew up there right away.. I was shocked my 7 year old son could not walk, talk, eat, swallow, move his right side. His eyes are crossed.. I stayed there with him for two days then they flew us both back to Tucson Arizona we're they are telling us to get ready for the worst :( They are doing Radation & a Kemo pill.. I DON'T want him on Kemo but they told me this would not make him sick and lose his hair.. I would really like to talk to anyone who is or has gone through this.. jjgilbert05@msn.com Jessica Here is some pictures of my baby boy This one was taken Yesterday after they removed the ventlator (sp?) http://img.photobucket.com/albums/v424/JJJGilbert/kiddos%20pictures/Cody%20album/2005_1004Image0050.jpg http://img.photobucket.com/albums/v424/JJJGilbert/kiddos%20pictures/Cody%20album/2005_0930Image0003.jpg http://img.photobucket.com/albums/v424/JJJGilbert/kiddos%20pictures/Cody%20album/CodysMRI3.jpg Jessica_1000 Wed, 05 Oct 2005 00:00:00 GMT I am so sorry that your family is going through this. I really think you should look into Ruta 6c and calcium phosfate. My Nephew is on this and is doing very well. I've posted here before to get the word out on it. Look over posts for the last few months. God Bless Thenley Tue, 11 Oct 2005 00:00:00 GMT my son was dx. with IDPG on 9-3-o3.We have study many diffrent tretmets.he finished his rad, will be 2 years 11-7-03. our little guy is still doing very good is now in kindergarten and loveing it.he took gleevec for 9 months,he lost all the steroid lbs plus a lot more he was very sick while on the gleevec.chemotherapy has shown no help to children with brain steem gliomas.you must ask qustions any and all that you can think of, write them down so you don't forget anything. always remain calm when talking to the Dr. so that you don't miss any thing that they say to you. ask God what he would have you do before doing anything.our son has been on ruta grav and calc phos for 15 months.I am going to check out josiahupdates.com to see if I can find a way to talk to other people and familys I'm not very good with the pc. my son was only given 10 to 12 month at best, that 26 month and 15 days ago. Nosnod Tue, 18 Oct 2005 00:00:00 GMT http://caringbridge.com/cb/viewHome. Do here is Cody's website to keep everyone updated on his cond' Jessica_1000 Tue, 25 Oct 2005 00:00:00 GMT I am writing because I want to provide as much information to parents of children with this devistating disease. My daughter lost her battle with diffuse pontine glioma in April of 2006. My thoughts and prayers are with you. Zarnestra was one of my daughters kemo study drugs. She had'nt had any sucess with that drug, one of the biggest side effects for her were severe hives, she eventually had to discontinue use of the drug. Please, if you need any emotional support, or have any futher questions, email me --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---I will be happy to help out in any way that I can. I am praying for your family. Robyn Sat, 19 Nov 2005 00:00:00 GMT I am so sorry to hear of your childs diagnosis. My daughter lost her battle with diffuse pontine glioma in April of 2006. If you need any emotional support or have ANY questions please email back. My prayers are with you. Robyn Sat, 19 Nov 2005 00:00:00 GMT I noticed your message on the board. I have information if you are intrested. I am praying for your family. email at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---thanks. Robyn Sat, 19 Nov 2005 00:00:00 GMT will be happy to offer any information you may need. my daughter passed away in April of 2006. Please contact me anytime. Robyn Sat, 19 Nov 2005 00:00:00 GMT Tabitha, I lost my daughter in April of 2006. She too was an angel and fought with everything she had I can certainly sympathize with you and your family. If you need any support please email, I completly relate. Robyn Sat, 19 Nov 2005 00:00:00 GMT I have posted here before. My 8 year old daughter has been diagnosed with DPG on March14/ 2005. Treatment: Radiation with Temodar Chemotherapie 42 days on low dosage. At the end of the 42 days the Tumor did not respond to either radiation nor chemo, we were sent home to spend quality time with our daughter. Docs did not want to continue maintenance dose of temodar, but I forced the issue and continued. We had a up and down summer but she returned to school in September/05. 2 MRI's during the summer showed no progress of the Tumor, swelling and the cyst of the tumor had disappeared. We were hoping, but 5 weeks later the ugly beast raised it's head. The latest MRI showed that the tumor doubled in size within the 5 weeks. Docs want to discontinue Temodar and switch to VP/16 instead because I will not accept the docs discontinuing all the treatment. I don't know how much time we have left, every day is precious. She has lost the use of her left arm and her left leg does not want to cooperate anymore and of course dizziness. Increase in decadron did not bring any change. I hear lots of you talk about ruta 6c and calcera etc. Which experiences did you make with complementary therapie, which ones did you find worked and which ones were a waste of time. My daughter takes Boswella Serrata, a natural anti inflammatory, I contribute the fact that we survived all summer on a very low dose (0.5mg 2x a day) of decadron to the boswella. Our children do not deserve a life sentence like this. Sunnyblueskies Tue, 22 Nov 2005 00:00:00 GMT Back in November 2004, my first grandson was diagnosed with a DPG. He was 4 years old at that time and was able to celebrate his 5th birthday last March. He was given radiation and took Temodar until August. Unfortunately, the tumor after showing signs of shrinking, began to grow again. Since August, he has had a shunt put in place that has seem to have helped with the symptoms. He was also given Gleevec, but it gave him side effects and based on his physical abilities seems that it did not affected the growth of the tumor. After careful consideration with the child's doctors and realizing that the tumor was still growing, they stopped the chemotherapy. Today, thanks to God's mercy he still with us. He can no longer walk on his own, the weakness on the left side of his body has increased, his speech is slurred and I am watching how the spark of life is slowly but surely dimming. His little body, swollen by the steroids, is slowly giving way to an end. I do not have an idea of how much time I will have with him. Surely we have had wonderful moments with him. He stills plays puppets with his stuff animals and we savor the smiles that we see. He was able to attend school for most of the time this Fall, we have watched him dressed up like Woody, Superman, Buzz Light, Batman and every character under the sun. His active imagination have given us joy and memorable moments that will be with us forever. This illness will take you though a journey of good and bad times. Make sure that you make the best of it. Do not dwell on what you could have done or not. DPG just is. It is not anything that you have done wrong. It affects the rich as well as the poor, it does not discriminate. Make sure that as individuals and as a couple, you begin looking for a support system. A person whom you can trust with your deepest fears, strengths and weaknesses. Every aspect of your life will be directly affected by this illness. Make sure that you maintain a healthy and nurturing relation with your spouse. Personally, I am a believer in Christ, in Him lies my trust, He has been my pillar of strength. My husband has been my best friend during this time, I appreciate his understanding and willingness to be not only by my side but also by our daughter's side. This is a time for family, do not burden yourselves with past hurts that only bring discord. Forgiveness is hard, however, it is liberating. Forgiveness does not mean forgetting, but means that you can look back to the event that hurt your feelings and still look forward to the future that is ahead. Unforgivenes paralyzes you and does not allows you to move forward in peace or grow into whom God intended for you to be. Forgiveness is not a feeling, but a conscious act of your will. (Weather you are a believer or not) I guess that I have not answer your concerns about DPG. Looking back to the last 12 months, what I can share is my heart with you. I hope and pray that you walk strong through all what lies ahead and at the end, regardless of the outcome, you and your loved ones are stronger, united, wiser and better persons. My prayers are with you, every family and every child with this diagnosis. May the Lord Bless you always. Yolanda1960 Thu, 24 Nov 2005 00:00:00 GMT Hello to all, I do know the fight you are going through. We lost our son Michael at age 12 on September 18th, 2004. He told us he wanted to be a microbiologist and study cells and cure diseases like cancer. A very lofty goal. We continure the fight through the Michael G. Curry II foundation for cancer research. We do not have the foundation for us but for all of you and all the kids who will get this terrible form of cancer. Hopefully with our help they will find a cure. To all of you. We pray every day for all of the children who have this disease. We will continue to pray for them and there families. The fight your child will have will be tough on you, the child is tougher than you imagine tho. God bless all of you. If you wish to see what we are doing visit us. www.nomorewasteddays.com Send us an e-mail at the site to include your child in the prayers or I will be happy to add your child to the site and your website addresses so that people can visit there and answer your prayers. Thank you Mike C. Father of pontine glioma victim No More Wasted Days God Bless Us All Michaels Dad Fri, 25 Nov 2005 00:00:00 GMT My daughter has earned her wings on Dec 7/ 2005. Spend time with your children, who knows how long they will be with you. The ugly beast of DPG does not have any mercy. Sunnyblueskies Mon, 12 Dec 2005 00:00:00 GMT Sunnyblueskies, My heart and my prayers go out to you and your family. Know that your daughter walks with God now and has no pain. Mike C. Foundation For Cancer Research www.nomorewasteddays.com Michaels Dad Mon, 12 Dec 2005 00:00:00 GMT Hi, My name is Amanda . My three year old daughter was diagnosed with Pontine Glioma on 10/31/05. She underwent third ventriacalostomy on 11/3/05 because she was suffering from hydrocephalis because of the tumor. On 11/7/05 she was transfered to NJ Cancer Instuite in New Brunswick NJ and is now undergoing radiation mon-thru friday. She receives chemotherapty (temador) every day. and is on dexamethasone (5mg) three times a day. Her orginal weight was 28 lbs, today she weighed in at 43.50lbs and now needs to be fitted for a new radiation mask because her current mask is now too small. This is week 7 of 10 of her radtion treatment. She takes Zofran for nausea prior to her chemo . THis medication is not covered by our insurance. She is also taking Vistaril as needed for nausea, as well as Zantac twice a day. We are stuggling finacially and are trying to move closer to the hospital where she is being treated. We also have two older children a son 11 and another daughter 8 who are also devastated and are going through the pain with us. If anyone knows of any support groups or funding that may help us PLEASE contact us. We are desperate to save our little girl. Please send me any e-mail address of DR.'s or websites where I may learn more of Ruta and any other treatment used to treat pontine glioma. my e-mail address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---any typw of information anybody can provide is deeply appreciated and needed!!! Thank you. Amandacolllins2005 Mon, 19 Dec 2005 00:00:00 GMT My nephew has been diagnosed with dpg, he is 6 years old. He just got back from Boston and finished 6 weeks of radiation along with temazolomide, he is know taking decadron, zofran and prevacid. I was so impresed when i saw him yestarday that he got back, he has crossed eyes, he has very bad motor skills on the left side of his body, cannot grab something with the left arm, he walks with assistance. I saw your message and it is encouraging to hear that your baby is doing so good. Do you mind me asking what was the therapy what do the drs. say know? is the tumor alot smaller? is it gone? I will love to have infromation, thank you very much. aso i will love to know more about ruta My prayers go to all of the parents and children with situations like this. Bachi H. Bachi Tue, 20 Dec 2005 00:00:00 GMT Dear Amanda, I have some information that may help you. I have a daughter who is now 7 years old who was diagnosed with a Diffuse Intrinsic Pontine Glioma on Aug. 3, 2005. Please check out her website www.aliciahopefund.com Please sign her guestbook and leave your email address so I can forward what info. I have. I could not get your email address from this site. I hope your daughter is doing okay at this time. I can not even begin to imagine how difficult all of this would be for a 3 year old! Here are a couple links for info. on Ruta. http://147.52.72.117/IJO/2003/volume23/number4/975.pdf http://www.iaccgh.com/news/2003/070303.htm I have quite a bit of info. and would not mind forwarding it to you. Have a Merry Christmas! I hope to talk to you soon. Christine M. mother of Alicia Christinems Fri, 23 Dec 2005 00:00:00 GMT Hello Amanda, My name is Pamela. My 6-year old son Daniel has DIPG also (diagnosed Feb 9 of this year). I am so sorry that another innocent child and their family have to suffer with this awful disease. My heart goes out to you all. Daniel has been through a surgery to place a shunt in his brain (he developed severe hydrocephaly), 6 weeks of radiation, 7 rounds of Temodar, and is now off of all steroids (thank heaven). He has been taking Ruta & Calc Phos for about 5 weeks now. We think the results are amazing - he had been struggling with low platelets and had been unable to take his chemo for two months - within two weeks of starting on the Ruta, his platelets had skyrocketed!! He had an MRI 3 weeks after starting the Ruta, and even though he had not had chemo for 2 months, his tumor had shrunk a bit. His Dr said it was remarkable. Here is the link for the study that was done on Ruta 6/Calcarea Phosphorica. http://virtualtrials.com/pdf/ruta6.pdf The doctor in India who provided me with dosage instructions for Daniel is listed below (I sent him an email, he responded overnight - you will need to do the same if you want to try this stuff): Dr. Prasanta Banerji (father) or Dr. Pratip Banerji (son) PBH Research Foundation --- Message edited by CancerCompass staff: for personal protection, email address and phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Here is the contact info for one of the women I talked to before I started Daniel on the stuff - she has GBM, a type of glioma, and has been on the medications for 4 years, she knows a lot: Chrisie E. - --- Message edited by CancerCompass staff: for personal protection, phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- I am getting the Ruta & Cal phos from Washington Homeopathic Products - website is www.homeopathyworks.com - they are very inexpensive. Here is my contact information - if you have questions or just need to talk, please don't hesitate to reach out to me: Pamela D. --- Message edited by CancerCompass staff: for personal protection, email address and phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Again, I am so sorry you are going through this. You'll be in my prayers. Pamela, Daniel's mom Danielsmom Mon, 26 Dec 2005 00:00:00 GMT Dear Amanda, My heart goes out to you, my 11 yr old son, Max was diagnosed with DPG in March and I know where you are at the moment, I hope you get the strength soon that we all end up acquiring on this journey. More practical matters, I noticed that Cancer Compass blocked Dr Banerji's email address, if you go on to www.thesweetestmemories.net, you will be able to contact him throught that site if you haven't already. Max so far is doing very well, the only symptom has been double vision and he had surgery a month ago to correct that. He has only been on Cal Phos and Ruta Grav for a month, it will be interesting to see if it has an effect. Almost since the beginning I have tried to keep Max on a good diet and have been working with a nutritionist in Utah and we have him on a number of supplements to help his system. His conventional treatment, which may be what is helping the most was 6 1/2 weeks of radiation and throughout that taking and continuing to take Zarnestra. We have had a slight reduction in the tumor due to the radiation and the last 2 MRIs have shown it stable. I have been busy researching my next move and I don't know if anybody else out there has come across Theraloc (aka TheraCIM h-R3 or Nimotuzumab) but the data presented so far seem to show a particularly good response rate in children with DPG (66%). This drug is currently not available in this country but will be hopefully in the next few months. Although it is a monoclonal antibody drug which a lot of doctors will tell you cannot pass through the blood/brain barrier, according to the people at YMBiosciences (the company in Canada that will be producing it) it has shown that it does get through. I would be interested to know if anyone else has info on it. If this is hurting you financially, maybe you could change docs and go to St Jude? Thats where we go, they pay for your flight, accomadation, everything and you do not receive any medical bills from them, also there are a lot of hospitals that work with St Jude so you may not even have to go to Memphis. Currently we are only going there once a month so its not a big burden on the rest of my family. St Jude's policy is that they will not turn anyone away. When we're facing this kind of illness, money is the last thing we should be wiorried about. Amanda, I wish you strength, and the one thing I learnt along the way is don't believe everything your doctor tells you, research everything yourself, the Internet is a wonderful tool. The other thing I have found is go to the top, email the experts and 90% of the time they do respond, they have a lot of sympathy for our plight. Be your daughter's warrior and you'll be in my prayers. Hang in there Ann Dpgmom Tue, 27 Dec 2005 00:00:00 GMT Dear Ann, My daughter also has a dipg. I was wondering what information you have concerning Theraloc? Do you have any specific websites? I tried looking through YMBiosciences but only saw press releases and did not see the same statistics you stated. I would be very grateful for any information. Also if you do not mind me asking, how is your son doing? My daughter was diagnosed in August. So far she is doing very well. Thank you for your help and information. Somewhere out there, there has to be something that can concur this horrible tumor. We just have to keep looking. Thank you again, Christine mother of Alicia www.aliciahopefund.com Christinems Fri, 30 Dec 2005 00:00:00 GMT Dear Christine, If you go to the YMBiosciences press release (http://www.ymbiosciences.com/presspop.cfm?newsID=3607) you will see that they give a 35% response rate to pediatric gliomas but I think that 9 of the patients had dpg and 6 of them responded which is where they came up with a response rate of 66% in dpgs. To anyone else reading this, I can't stress strongly enough that this is response only, not cure, and the study was with a handful of patients, I would hate to mislead anyone. As I'm sure you know, the drug is not yet available in this country but should be shortly (6 months at most is what I've been told) and I have been told that it will be available through a hospital in Florida (I can't remember which one) as well as MD Anderson, Vanderbilt and Denver Children's Hosp. You asked how Max is doing, he is fine, attending school and being a very normal child. For the first 8 months he wore an eye patch because of his double vision but he had surgery a month ago to correct that. The radiation made him throw up on occasions for quite a few months afterwards but now its rare if he's sick and he seems to tolerate the Zarnestra very well, a lot of children have problems with hives. I would be interested to know what chemo Alicia is on and what made you choose that one, Zarnestra is a phase 1 study drug which we may be crazy doing but we liked the thinking behind it and so far, so good. I am a big believer in good nutrition too, a healthy body has a better chance. I look forward to hearing from you and we enjoyed your website, Alicia is lovely, I left her a message. Take care, Ann Dpgmom Sat, 31 Dec 2005 00:00:00 GMT How is your daughter doing? My daughter, Ashley, age 13 was diagnosed June 3, 2005. She too did radiation and temador in a pill form. In August the tumor had shrunk. However in October the tumor came back again double in size. Ashley, too is now on VP16. It is given with apple juice through her feeding tube. She had a CT scan done Friday, January 6, 2006 and the tumor has shrunk. Dr. Godder was stunned at the results. Pontine gliomas interfere with bodily functions. Therefore, anything in a pill form will not work as well because one of the things effected by this tumor is the digestive process. Pills have to go through so many functions of the body before it finally gets into the blood stream. Since Ashley has been on the VP16 she is showing signs of improvement. She did have to get two pints of blood on Monday January 9, 2006. The key factor here is if she is able to continue to tolerate the chemo without getting pneumoia. We are waiting to hear from Dr. Godder concerning the Ruta 6 treatments. She is doing her own research. We have ordered the products to begin treatments for Ashley if Dr. Godder thinks it is okay. Tbritash Thu, 12 Jan 2006 00:00:00 GMT My son Davis had an MRI May 1st, 2003 during his diagnoses for a processing disorder. They found two masses in the pons of his brain. We were referred to Vanderbilt's Children's Hospital. After weeks of tests including a lumbar puncture, blood tests, more MRIs and a PET scan the doctors decided it was either very slow growth or not growing at all. They decided we would watch it every 6 months with an MRI. November 2004 the tumors had grown together and they took up the entire circumference of the pons and were actually pushing outward. He was now diagnosed with a diffuse intrinsic pontine glioma. We immediately embarked on an agrressive treatment regimen. Davis received 33 radiation treatments. They used Intensity Modified Radio Therapy (IMRT) which reduced the residual affects of the radiation. One month after completion of IMRT an MRI showed a significant reduction in the tumor. The pons was back to it's original size and shape. We then began 12 months of TEMODAR in order to manage the tumor. Davis has not shown any discernable symptoms of this tumor. He has not had to take steroids. Only Zofran for his nausia during radiation and chemo. This month we were to begin his 12th and final cycle of TEMODAR. His MRI on 3 January showed tumor progression. We begin a clinical trial on the 23d that is a combination of a monclonal antibody and chemo. These drugs have worked well in combination for adult patients with colorectal cancer. He will receive infusions of ERBITUX (Cetuximab) which is the monoclonal antibody along with IRINOTECAN. This is a Phase I clinical trial being conducted at several pediatric cancer centers. So far, the only alternative medicine we have used is prayer, lots of prayer. The TEMODAR was very successful in suspending regrowth of the tumor. However, they never promised that it would last. The hardest part for our family is the inability to plan beyond next week. God Bless you all. Matt Mndferg Thu, 19 Jan 2006 00:00:00 GMT Hi Christine, For some reason I can't find your email address on my internet but I wanted to let you and anyone else interested what is now going on. Just after Christmas Max's tumor started to progress, he was having a few problems swallowing and I noticed some weakness on the right side of his face and an MRI confirmed what I already knew. After looking at what therapies St Judes and Vanderbilt had to offer and talking to the doctors at both hospitals, we decided that the monoclonal antibody Theraloc had the most hope with the least side effects. As you know the drug is not available in the US yet and won't be available in Canada for a couple of months so I'm writing this from Germany where most of the studies have been done. We won't know for another couple of weeks whether Max will respond to this treatment (he has had 2 infusions so far) but he is holding steady and we are able to explore the area although he does get tired. If anyone is interested in this treatment, I'm happy to provide more details about the 'nuts and bolts' (accomadation etc.) In the meantime, auf wiedersehen! Ann Dpgmom Sat, 21 Jan 2006 00:00:00 GMT Hi Ann My name is Melinda and my son was diagnosed back on Sept.8th with a DPG. He was immediatly placed on steroids and began 6wks of radiation therapy. We also began Dr. Banerji's Ruta/Cal Phos remedy along with other supplements recommended my his naturalpathic doctor. Its been approx. 3 month since he finished radiation, and he is doing great. He's only taking the homeopathics, and is currently symptom free. We have read some of the info. concerning Theraloc, and will be talking to the Clinical Coordinater here at Denver Children's Hospital about the possible trial. Any info. you could share about whats happening in Germany would help us a great deal. We are willing to go anywhere! I know that clinical trials can be a long time in happening, and we simply may not have time to wait. We have family there, and my husband's company has offices there, so we wouldn't hesitate to come out if there are good reasons to. We have a blog website set up to keep people informed, its Steadman.blog.com. Please feel free to contact us there, or reply back here. Thank You! Melinda Bensmom Tue, 31 Jan 2006 00:00:00 GMT Hi Melinda, Sorry I haven't replied sooner, its been a nightmare trying to keep up with everything. Max did not respond to the treatment all though I would thoroughly recommend giving it a go, I got home last night. I went to your blog site but it didn't appear to have your complete email address on it so please let me know whether its .com or .net or whatever, I'm sure this site will let you do that. I have Prof Bode direct phone number (he preferrs phone calls) and I checked with him before I left that it would be OK to give it out to other parents of dpg kids, also Theraloc will be available in Canada within about 2 months. Hope to hear from you, Ann Dpgmom Sat, 11 Feb 2006 00:00:00 GMT Ann, I'm so sorry to hear that Max didn't respond to treatment. How long were you guys out there? It must not take too long to determine if they will respond or not. Do you guys have any idea on what to do next? We've begun to notice some side effects coming back in Ben. He's scheduled for an MRI on Mar. 14th, but we may insist on doing something sooner. Theres nothing left for us to consider except clinical trials. The rest on my email address is .net, so its melsteadman at mesanetworks dot net. Where at in Germany is this study taking place? Please keep me updated on Max. I will pray for him to find a miracle. Talk to you soon, Melinda Bensmom Wed, 01 Mar 2006 00:00:00 GMT I am so sorry about the loss of your daughter. I am a little confused though. When did your daughter pass away? You said April 2006 in a few posts. It is now March 2006. Angelsx4 Wed, 01 Mar 2006 00:00:00 GMT To Jaydens' mama... I see that your messege is just over a year old.... My son Kelley was also 4 when he was diagnosed with a pontine glioma, he passed away 5 months later. I don't know if you'll see this msg, or how things have gone for you but either way I know you need support, so if you are still using this msg board I would be happy to hear your story and know that I understand. sincerley, Kelleys' mom Kelleys Mom Thu, 06 Apr 2006 00:00:00 GMT Hi all - My niece was just diagnosed on April 1, 2006 with the worst kind of tumor, intrinsic pontine diffused glioma. She just turned 6 years old in January. She is in St. Jude's but I am seeking alternative remedies that may also be helpful. Has anyone heard of Protocel? If so, have they heard of it helping? Thanks so much for your help. Here is Maria's website if you want more info: www.prayersformaria.com. Thank you. Eileen Eileen Mac Tue, 18 Apr 2006 00:00:00 GMT Hi Eileen: First of all I would like to tell you how sorry I am to hear about your daughter. I just lost my daughter due to a nine month battle with a diffuse pontine glioma. This is the worst thing I have ever witnessed. Value every single minute you have with your daughter. While she is still able to get around get in touch with the Make A Wish Foundation and help grant her wish while she is able to enjoy it. There is very little information about DPG at this time. If I had to do everything all over again, I would have never put my daughter through radiation, chemo or the steroid medication. It only prolonged her life and allowed this tumor to take everything precious to her away bit by bit. At the end she was blind, deaf, on a feeding tube, unable to walk, or move her arms, in diapers and could not speak. Finally, she could not breath. This will be very difficult to watch, but rely on friends and family to get you through this. Most of all if you are working, take off the time so that you can be with your daughter. I will pray for you and your family to get through this. Lots of Love, Teresa Tbritash Thu, 20 Apr 2006 00:00:00 GMT Hello I posted a while back.. My son Cody 7 years old got dx Sept 25 05 with a Diffused Pontine Glioma My little boy passed away on Dec 16 05 after a short three month battle with this ugly cancer... I have a website for him it is Caringbridge.com the site name is "CodyGilbert" I have to say PLEASE KISS your child and give them HUGS as much as you can because you may lose them. I would give ANYTHING to be able to kiss my son on the forhead and give him a hug again.. GOOD LUCK and GOD BLESS... Jessicag Thu, 20 Apr 2006 00:00:00 GMT I am so sorry to all the children and parents of these children that have been diagnosed with this tumor. I want you all to know, there is no cure and do not let your doctors tell you there is because there is NO CURE!!!! This tumor is very aggressive and cruel. My advice to you is to love your children and give them hugs and kisses before this tumor takes over there entire body. Tell them you love them everyday. Spend all your time with them. Take them places to where they can enjoy what time they have left here on this earth. Because of this tumor being so rare a lot of reseach is not being done and this tumor will continue to take children until there is a cure. Get friends, family, anyone involved to raise money to find a cure for this tumor so that no more children or parents will have to continue to go through this. MAKE PEOPLE AWARE of this beast!!!!!!! My thoughts and prayers go out to you all!!!! Pontine Glioma Fri, 21 Apr 2006 00:00:00 GMT Why would you tell in detail what your daughter went through. That is something you would do in private to these parents. Supposing one of the children would go on line and read your comment. How afraid that would make them. Pontine Glioma Fri, 21 Apr 2006 00:00:00 GMT Thank you Teresa for letting me know what to expect. Maria is not my daughter though, she is my niece. But I really do appreciate you letting me know what to expect in the future. It is so hard to see my brother and his family go through this and the information we get from others will help us to understand what is happening. I appreciate anyone that can help explain what happens along this terrible path so that we can cope with it and understand it better. Thanks again Teresa for sharing your child's story and for your thoughts and prayers for our little Maria. Eileen Eileen Mac Fri, 21 Apr 2006 00:00:00 GMT Teresa - also just so you know, we have already been in touch with Make-A-Wish and they are going to be taking Maria to Disney World very soon. I hear your advice on the treatments, but we just have to try. We aren't doing the type of treatment that takes hours a day or has hair loss, and we are really focusing on the quality of life of Maria. Hopefully we are doing the right thing to give Maria the best quality of life and to allow Maria to be with us for the longest possible time. Only God knows the plan. Thanks again for the information. Eileen Eileen Mac Fri, 21 Apr 2006 00:00:00 GMT Hi everyone, I am Kayla's mom. Kayla was dx 08/23/05 with dipg and is currently symptom free. Our website is www.caringbridge.org/visit/kaylalucius if anyone would like to see our story. We have a MRI next Thursday, April 27 and would welcome prayers. For those of you that don't know any, there are survivors of this tumor. Not many, but there are some. I can give you websites if you want, e-mail me from the link on our website. Since biopsies are generally not possible with this tumor no one knows what exactly is in there and I think each child is dealing with something a little different. We did the radiation and chemo and God allowed Kayla to have a good response to the treatment. On our post radiation MRI we had substantial shrinkage. We decided to go with alternative approaches after the radiation and after much prayer. We have had no chemo or any drug as a matter of fact since January 10. Our Feb MRI showed a little more shrinkage. Kayla is back in kindergarten and loving it. I am praying for your children and I really just wanted to write to offer some hope. We are 8 months into this battle and all is well here. Much Hope and Prayer, Brenda Kaylas Mom Fri, 21 Apr 2006 00:00:00 GMT Hello to all, Our hearts and prayers are with all of you. If you would, please drop me an e-mail and let me include your kids on our site for prayers. We try to keep up with as many of our children as we can. As people ask about them we pass on information or we link to your site. I get a lot of questions about the different kids and families fighting this disease. nomorewasteddays.com Michaels Dad Mon, 24 Apr 2006 00:00:00 GMT Hello everyone, I am writing to offer some great hope for all pontine glioma families. Our daughter Kayla, 6, was dx on 08/23/05. We did the radiation (finished 10/27/05) and we did the Temodar until 01/10/06 when after much prayer we decided to stop the chemo. We feel that God has led us to totally alternative treatments, so this is what we are doing: Jeanne Wallace diet and supplements since Oct, Ruta/Cal Phos since Dec 1, Ambrotose since Jan, laser therapy with the Erchonia PL 5000 laser at our holistic doctor's office since the end Jan, a lot of detoxification, and just recently MGN-3, MSM, and Vitalzym. Our results have been amazing. Kayla has been symptom free since November. MRI #1 Aug 26, 2005 (before radiation/before Temodar): 4.7 X 5.2 X 4.2 cm MRI #2 Dec 1, 2005 (after healing service/thousands praying/5 weeks after radiation/still on Temodar/started Ruta 12/1): 3.0 X 3.0 X 2.8 cm MRI #3 Feb 7, 2006 (5.5 months after diagnosis/2 using months Ruta/still on Temodar/began more alternative treatments mid Jan): 2.9 X 2.1 X 3.0 cm MRI #4 Apr 27, 2006: no size listed in report, big response, tumor is fading, brain stem normal size. I posted the entire report on the 04/28/06 journal entry if you want to see it. The doctor told us to continue what we are doing and we plan to. He said the tumor is faint and he was all smiles. We are very blessed I know and are praying for all the pontine glioma children daily. Much Hope and Prayer, Brenda Lucius www.caringbridge.org/visit/kaylalucius Kaylas Mom Sat, 29 Apr 2006 00:00:00 GMT I agree with you. Why would you go into specific details regarding the last stages of the tumor your daughter had. Why would you take away the little dignity your child had left by telling everyone how terrible they looked or how nasty they looked? Where you able to take care of her the entire time? Seems you have a lot of guilt and your trying to justify and get sympathy by telling the world how she looked. Do get counseling and come to terms with your guilt and please dont post anymore graphic details of your childs symptoms suppose another child reads your messages, could you imagine how horrific and how scared they would feel? Shoot From The Hip Sat, 29 Apr 2006 00:00:00 GMT To the person who "shoots from the hip": It sounds more like you have anger issues and should get them worked out. You cannot be serious that children will read this site, as it is hardly marketed or of interest to any child. Clearly this site is for adults unlike yourself, that can handle the reality of the situation they are dealing with. Since you are not telling people who you are, you are not only angry, but your are cowardly. People going through this terrible disease need to know what to expect. It is not less dignifying for the child in any way, and I am personally offended that you would try to make people feel bad about sharing their stories. We need to know and we need to share, it is the only way to get through this. Now please keep your ignorant comments to yourself. If you don't want to learn more about this tumor, then don't read this site, or any other site about this disease. Thank you for understanding. Eileen M. Eileen Mac Sun, 30 Apr 2006 00:00:00 GMT It is called having respect for a dying child or a child that has passed away from this tumor. You know nothing about this tumor and what it does and what it will do. You have no clue what you and your family is about to go through and once you do, lets here you go into details of what happened and what this tumor is doing and how much crap that little girl had to go through before the tumor took her life. YOU KNOW NOTHING!!!!!!!!!!! You have only just begun. Have respect and what kind of person are you any way that would want details of a dying child and what she went through before she died broad casted for every one to read. You are the one that has the problem not the person that signed in as Shoot from the hip. You and her mother have got issues that need to be worked on. Think about the child and children before you think of yourselves. Respect Mon, 01 May 2006 00:00:00 GMT Please add Alyssa Rose's name to your prayer list. She was dx 02-12-05 with a dpg. She has fought a hard battle. Her left side is slowly shutting down. I see you are studying these, does anything help? She is 5yrs old. Prayers Everyday Thu, 04 May 2006 00:00:00 GMT I read that you have info on BSG's. My grandaughter is 5 with one. Has had rad and chemo. was dx 02-12-05 everything was real good and now it's growing.Nothing is helping Prayers Everyday Thu, 04 May 2006 00:00:00 GMT My thoughts and prayers are with Alyssa Rose. Please email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Maybe there is something that I can say or do to help. I will not discuss these children on this web site, only in private through email. My prayers are with you Alyssa!!!!! Inmemoryofashley Thu, 04 May 2006 00:00:00 GMT I am so sorry not to have responded in so long. my husband and i are bulding a house, and i do not have my computer up and running yet. yes you are correct, my daughter pass away in april of 2005, its been one year and one month. Robyn Thu, 04 May 2006 00:00:00 GMT thank you for that msg. Im crying. you really say it well. love your child love your self love your life. My 4 yr old, was our oldest, passed of dpg july 04. My husband our daughter and our new addition baby boy have molded into a new healthy (as can be) happy family... we call it the new normal. To all families with dpg, love your child through it and honor his/her memory by keeping yourself and your family together. heal yourself Kelleys Mom Thu, 04 May 2006 00:00:00 GMT Eileen, I lost my angel on April 6th, 2005, and if you need any info on the reality of this condition please feel free to e-mail. --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- I will talk about anything you need to know. thanks, robyn calvert Robyn Thu, 04 May 2006 00:00:00 GMT That is the way it should be, discussed through email and not broad casted on this message board the reality of this condition and what these children endored before there passing away. Inmemoryofashley Fri, 05 May 2006 00:00:00 GMT Wanting to know how Maria is doing. I have been reading her web site but it has not been up dated in a while. Hope everything is going OK. Inmemoryofashley Wed, 10 May 2006 00:00:00 GMT I have been keeping up with Maria's story. It is nice to read that she is doing well. I have also noticed that she is going to St. Judes Hospital. There services are free to your family. I hope with all the money that is being raised some will be donated to St. Judes Hospital for the care that Maria is recieveing and also to help with the care that other children are recieving. If it was not for St. Judes Hospital there is no telling where these children would be and Maria. More research needs to be done on these tumors and others cancers that continue to take childrens lives and it takes money. St. Judes runs strictly on donations, So please keep that in mind. Take care, my thoughts and prayers are with you and your family. Fight Cancer Wed, 31 May 2006 00:00:00 GMT Hi Parents, In reading everyones message, I have to say that I am glad that I am not alone in my grief. On Wednesday 6/7/06, my daughter had her first MRI. We went to All Children's Hospital in St. Petersburg, FL. The best hosptial... I was told after that appointment by the Doctor that my daughter had an non operational tumor and that the Onocolgy Doctor will have recommendations on what our next step will be. I was not inform until a couple hours later what her tumor was. The I was given the shock of a life time, that my daughter (my beautiful little girl) will probably die next year. I can not even begin to feel all the hurt that this is causing. I have a little boy that is 9 months also and feel sadden about him not probably going to remember his sister at all. My husband and I are now discussing everything, down to the last moments she will have. Some please tell me how in this world I am going to say good-bye to her!!!! Lisa Rene Fri, 09 Jun 2006 00:00:00 GMT Dear Lisa, Sadly, I know exactly how you feel. My daughter Alicia was diagnosed with a diffuse intrinsic pontine glioma on Aug 3, 2005. I remember those first days after diagnosis were overwhelming! Not to say it gets easier, it will never be "normal" again. I think you just learn to adapt to your new normal. I know the prognosis is grim. Although there is hope, do not give up before you begin to fight. I have researched constantly since Alicia's diagnosis. I would love to forward you that info. You can go to my daughters website www.aliciahopefund.com sign her guestbook and give me your email address. Or you can email me off this message board at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----either way. I wanted to mention I have a daughter who is now 1 1/2 years old, when Alicia was diagnosed she was only 10 months too. With Hope, Love, & Prayers! Christine mother of Alicia www.aliciahopefund.com Christinems Sat, 10 Jun 2006 00:00:00 GMT Lisa -- So sorry to hear about your daughter. That has to be any parent's worst nightmare. Saying goodbye? You make sure she enjoys her remaining time. Make sure she can do the things she has always wanted to do, and see what she has wanted to see, while she is healthy enough. (Contact Make a Wish, if you haven't yet). Take pictures and videos so her brother will know of her. Be there for her. Do not grieve excessively in front of her. When her health starts to fail, do what you need to do to help her cope with poise and dignity. When it comes time to say goodbye, hug her and kiss her and, if it is in your belief system, tell her you will see her in heaven. Be strong. Ed S. ed 12345 Tue, 13 Jun 2006 00:00:00 GMT Please do send any information you might have. We are in desperate need of help. My cousins daughter was diagnosed this week and seeing as this is all very new to us all of the information we have recieved has been very negative. Please do help! Thanks, Lili Lili21499 Sat, 17 Jun 2006 00:00:00 GMT Lili, There are many sites parents have created that can (hopefully) asist you in your request for information. My 5 year old son has this "thing" and we continue to fight and look for treatments continuously. We have set up a site for him at jjsmiracle.com. In it, you can find what we have done to date as well as links with information and other children. Sites are updated regularly and we all share what we have. Hope this helps Jim jjsdad Jjsdad Fri, 23 Jun 2006 00:00:00 GMT Lili, Go to this web site, my email address is there, send me an email and I will do what I can to help you out. Tina http://www.caringbridge.org/visit/ashleychristian Ninny Sun, 25 Jun 2006 00:00:00 GMT This is what I know Ashley would say to all of you: HOPE Hope is a happiness held in the heart when happiness seems to be gone. Hope is a quiet joy deep within encouraging us to go on. Hope is a guide when we seem to be lost that can help us in finding our way. Hope is a strong immovable force that our doubts and our fears cannot sway. Hope is a light that burns in the night in a place where a miracle starts. And every good thing will come in it's time, as long as there is HOPE in our hearts. (author unknown) IN LOVING MEMORY OF ASHLEY CHRISTIAN SEPTEMBER 24 1992 MARCH 29 2006 Inmemoryofashley Sun, 09 Jul 2006 00:00:00 GMT Please email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. I have information I would like to share with you. My five year old daughter Hayley died 12/24/05 from this. Wanda Hayley5 Tue, 11 Jul 2006 00:00:00 GMT Check out WWW.burzynskiclinic.com . Dr Burzynski is the only Dr. that has successfully treat children with diffused pontine glioma. Their clinic is in Houston Texas. Do not do Radiation and Chemo. It does not work they know it will not work but they will do it anyway. Radiation will cause the tumor to explode in growth and will make it resistant to other treatments. The doctors will not tell you this. They also will not tell you about Dr. Burzynski either. They will tell you that there are no other treatments out there. I know we have already gone through this with our daughter Hayley. By the time we got to Dr. Burzynski it was to late. Wanda Hayley5 Thu, 13 Jul 2006 00:00:00 GMT Explain something to me. If this doctor has successfully treated children with this tumor then why hasn't HE gone public? Instead he has chosen to keep quiet. I cannot see other doctors knowing this and choosing to allow other children to die from this tumor because they have chosen to keep quiet about this doctor. Your daughter passed away from this tumor and you are just now making it known about this doctor. There have been many children diagnosed with this tumor and you are just now bringing this doctor to attention. WHY!!!!!!!!!???????? Please send me proof of this doctor succesfully curing this tumor. I know several parents that would love to save there childs life. You can get my email address from Ashley's website. This is her web site: http://www.caringbridge.org/visit/ashleychristian Inmemoryofashley Sat, 15 Jul 2006 00:00:00 GMT Just letting all of know, i just went into that web site, i have emailed the staff at this clinic and asked if they have found a cure for pontine glioma's. I will let you all know as soon as i hear something back. There is a big difference between a cure and prolonging someones life. Inmemoryofashley Sat, 15 Jul 2006 00:00:00 GMT Hi Tina, I understand your anger. We are angery too. Like you we lost our daughter Hayley to the same hideous monster. Hayley was diagnosed on June 21,2005 we were immediately sent to MUSC in Charleston South Carolina. Hayley underwent six weeks of Radiation and Chemo Treatments. While she was doing the treatments she started to improve. But two weeks after the treatments were over she started getting worse again. Four weeks after the treaments were over she had another MRI it showed that the tumor had exploded in size and was growing rapidly. The doctors told us to go home and enjoy what time we had left it would be a matter of weeks. We were told that there were no other treatments out there don't bother looking. But as parents we could not accept that so we went home and started looking someone told us about Dr. Burzynski in Houston Texas we checked out his website and then called the Clinic they wanted to see Hayley so we went to Houston. When we got they're they wanted another MRI it showed Hayley had fluid on her brain and needed a shunt. We went to Texas Childrens Hospital when they found out that we were dealing with the Burzynski Clinic they refused to do the shunt. We then went to M.D. Anderson Cancer Center in Houston. They refused at first to do the Shunt unless we let them treat her for the tumor. When I said lets just take Hayley home Dr. Wolfe changed his mind and said they would put the shunt in and if we wanted to go back to Dr. B he would let us. But he wanted us to consider his treatment which had never been tried before and had a list of side effects and it she had those side effects they could kill her. While at MD Anderson we heard about another treatment in Germany for Nimotuzumab that had supposedly had very good results. We decided to go with it and it we sent to MD Anderson and Hayley was treated with it for six weeks. We came home Nov. 30th and we were supposed to go back to Houston for another MRI on Dec. 12th. Hayley began to have seizures two days after we got home and another MRI was done at the local Hospital it showed four new tumors spread through out her brain. We decided to take her home and let Hosbice take over. It was total up to God now. Hayley died on Christmas Eve. That morning her breathing was worse and she hadn't eaten or drunk anything in two days before. She was out of it. The Hosbice Nurse had told us her organs were shuting down. And that Hayley was waiting for us to tell her it was alright to go. At noon I picked her up and with my husband we sat down on the sofa with her. I told "Hayley I know it's hard and your tried of suffering so when your ready go with Jesus and the Angels." Hayley took two more breaths and she was gone. We miss her terrible. And we are angry at the doctors for not telling us about all the treatments out there. Radiation does not work they know it doesn't work but they do it anyway. Dr. Burzynski told us that if the Radiation does not get rid of every last cancer cell that it will cause the tumor to explode in size and will grow rapidly and will be resistant to other treatments. That is what happened to Hayley. And from what we are finding out it is happening to all these children. Dr. B discovered in the late sixties that people with cancer were missing certain enzymes and peptides that people without cancer had. So he came up with away to put these enzymes back in the body. Elon pharmacuticals tried to buy his treatment from him and he refused to sell it. So the FDA tried to prosecute him but two hundred of his patients showed up with picked signs demanding he be let go. The whole event caused a major embrassment for the FDA and they dropped the charges against him. Cancer is a one hundred billion dollar a year industry. If there was a cure for cancer that industry would have to go away and they would loose all that money. I do believe there is a cure for cancer and diabetes but the medical industry will never let us see it. They are making to much money off of it to let it go away. And if you don't believe this you need to take the blinders off. Dr. B. has been trying to get his treatment approved by the FDA for years. Have you heard of the Thomas Navarro Bill? Thomas was a little boy in 1999 with a brain tumor his parents didn't want to do radiation and chemo so they took him to DR. B. but they had to get permission from the FDA to let DR. B. treat Thomas. The FDA said no they got senators Alan Keyes and Dan Burton involved. The Navarro's made a deal with the FDA to do a few treatments of Radiation and Chemo and if it wasn't working the FDA would give them permission to go to Dr. B. The FDA agreed. Thomas was treated with Radiation and Chemo which disfigured his face and caused multiple tumors when they went back to the FDA to get permission to go to Dr. B. the FDA once again said NO! Thomas died. You can look this up on the internet. (Thomas Navarro Bill) Before we went to Texas to doctor Bruzynski's Clinic we contacted a former patient of DR. B.'s she was diagnosed with a brain stem tumor at the age of 10 she is now and adult with a daughter of her own. We also talked to the Aunt of a little girl that was treated as an infant she is now eight and doing fine. These stories can be read about on Dr. Burznski's website. Along with contact numbers. The problem is that by the time kids get to the Burznski Clinic they have already been treated with Radiation. And it's two later for his treatment to work. We have to get the information to parents before Radiation is done. They're is a story on the news right now about a 16 year old boy with Hodgeskins Disease he did Radiation and Chemo and was so sick that he could not walk. They then took him to Mexico for treatment he says he feels great but the court is trying to force him back in to being treated by radiation again. Why? They don't want americans being treated in other countries taking the money away from the doctors and hospitals here. I urge you to go to Dr. Burznski's Website and read all about him and his treatment. Oh and his treatment is NONTOXIC unlike Radiationa and Chemo!!! When we went for Radiation and Chemo the doctor's told us that Radiation and Chemo can cause NEW Tumors to grow further down the road. They also told us that of all the children they know of that have this type tumor they all died within 2 months to two years of being diagnosed. Hayley died six months and 3 days after being diagnosed. It is our passion now to help other families avoid the same fate. Why do some people get cancer and some don't??? Sincerely Wanda and Randy Hinton Cross Hill, South Carolina Hayley5 Sat, 15 Jul 2006 00:00:00 GMT I understand everything that you are saying. Ashley was diagnosed with Diffuse Pontine Glioma. We were told that these type of tumors do not grow other tumors in the brain nor do they spread through out the body. This one tumor will just continue to grow and the tumor is very aggressive. Ashley's tumor did shrink after radiation. Diffuse Pontine Glioma is a tumor that is on the inside of the brain stem growing out into the pons, which controls everything. I have read his web site, where is it stated in his web site that he has found a cure for this tumor? I did not see it. That is why I emailed his staff. If there is a cure, parents need to be made aware of this. I don't care what that doctor would have to do to get it out that he has found a cure. Inmemoryofashley Sat, 15 Jul 2006 00:00:00 GMT One more question, you were right there at this clinic in Texas with this doctor, why did you choose to go with another treatment option instead of going with Dr.Burzynski? You were right there. I am not trying to give you a hard time. Please do not think that I am. I did find those stories of cancer survivors. I read about the 5 year old with Pontine Glioma. The tumor is still there, which means, it could take off at any time growing again. Inmemoryofashley Sat, 15 Jul 2006 00:00:00 GMT Our mistake. We were confused and didn't know which way to go. Dr. Wolfe at MD Anderson was determined to treat Hayley and He tried hard to convince us that the girls that survived did not have the same tumor Hayley did. Because Dr. Burznyski's treatment has not been aproved throught the FDA Insurance companies do not cover it and it is very expensive but it's cheaper than what the hospitals charge. We let Dr. Wolfe talk us out of it. And we heard about the drug from Germany. Dr. Burznyski told us that the doctor's at MD Anderson would try to keep us there. And he was right. Dr. B. also told us that he knew about the new drug from Germany and that it does not work. But we went with it anyway. We are trying to meet with congressmen to pass a law that would make all doctor's and hosptials tell you about all treatments that are available not just the ones they have. We were lucky we didn't loose everything trying to treat Hayley. But some families have lost everything trying to keep their child a live. That should not happen. Don't get me wrong I was willing to give up everything I owen to keep Hayley alive. Hayley5 Sat, 15 Jul 2006 00:00:00 GMT Everything that has been used for these tumors is experiemental and not FDA approved. That is why the insurance company's will not cover it. Also the insurance's know there is no cure for this tumor and that is why they do not cover a lot of the medical bills relating to this tumor. You did all you could do for your daughter, just as we did for Ashley. Inmemoryofashley Sun, 16 Jul 2006 00:00:00 GMT http://www.caringbridge.org/visit/ashleychristian Go to Ashley's web site, you will get my email address there. I would like to send you a copy of the email I recived from Dr.Burzynski staff. Inmemoryofashley Mon, 17 Jul 2006 00:00:00 GMT I am sorry but I need to say this and I hope that none of you take it the wrong way. I have been keeping up with Maria's story. I am sorry that she was diagnosed with that and I feel for her family too. I am reading her story and there is constantly something being done to raise money for this family but I am not reading where any money is being donated to St. Jude's Hospital. That Hopsital is stictly ran on donations at no cost to the family. It does not cost them a dime for anything including the travel to and from the hospital or the stay. That bothers me!!!!!!!!!!!!!!!!!!!!!!!! Stjudeshospital Sat, 29 Jul 2006 00:00:00 GMT Hi, I have a family friend that has been diagonsed with this at the age of 20. Your message said that you have information. Could you share with us? He has not started treatment as of yet. Thanks for all of your help in advance. Best Wishes to your son and your family. Family Friend Family Friend Thu, 07 Sep 2006 00:00:00 GMT Renee, Who are you talking too? Inmemoryofashley Fri, 08 Sep 2006 00:00:00 GMT Anyone with information on Pontine Gliome and best course of action. Family Friend Fri, 08 Sep 2006 00:00:00 GMT Can you send any info that you have. I have a family friend diagonsed with this. Looking for anything helpful. Our prayers for your child and family. Family Friend Family Friend Fri, 08 Sep 2006 00:00:00 GMT Could you send the information that you have to me. I have a family friend just diagonsed. Our prayers for your child and family. Family Friend Family Friend Fri, 08 Sep 2006 00:00:00 GMT Go to this web site: http://www.caringbridge.org/visit/ashleychristian My email address is there. I will do what I can to help you through email Inmemoryofashley Fri, 08 Sep 2006 00:00:00 GMT I had an earlier message on this board from Patricia - February 2004. Like your family we received the same diagnosis and knew we had maybe a year left with our eight year old granddaughter. As I look back, there is one thing we did not do that I wish we had done. I held her every opportunity that I had so that I would remember how she felt in my arms, I memorized her scent, the feel of her silky hair, journaled all of our experiences in that last year, had professional photos done of her and her sister. What we did not do was record her voice, which I suggest you do. To be able to hear her when needed,is a wonderful gift she will leave you. We lost our granddaughter in February 2005 and I thought I would never be the same. But, I realized that the most important thing we all could do to honor her was to remember the joy, the happiness, the wonderful memories that her eight years with us brought to us. The family decided to have her at home until the end and life was kept as normal as it could possibly be under the circumstances. Even at the end, when she had only the use of her right arm, she continued to draw, work in clay, play her video games and write on her white board when she could no longer talk. Truly cherish the time you have and when it is over, remember her with great joy. My heartfelt prayers are with you and your family Patricia Fri, 08 Sep 2006 00:00:00 GMT hi, thanks for your time. I have been diagnosed with the above. As you can imagine at my age i know what is going on and what is happening. Will i be in pain? How bad does it get? sorry i understand these questions are difficult to answer. Im so scared. Lisa1 Sun, 15 Oct 2006 00:00:00 GMT hi, jus read your message, obviously this is very rare in adults. Its cruel as we understand what is going on. How bad does it get and will they sedate me or someting as im hysterical. Lisa1 Sun, 15 Oct 2006 00:00:00 GMT HI, I will keep you in my prayers. I don't know much about the illness. Our 20 yr old friend is doing better since the radiation and chemo treatments have started. We will continue to hope for the best for him and for you. Family Friend Mon, 16 Oct 2006 00:00:00 GMT Go to Ashley's web site so that you can get my email address. Go to caringbridge.com and put in ashley's name just like this. ashleychristian I want to talk to you. Inmemoryofashley Tue, 17 Oct 2006 00:00:00 GMT I was wondering how your little boy is doing. We have a 7 yr old daughter that was diagnosed on 8/29/06 with DIPG. We caught it immediately due to the fact that she had a headache and I knew if she had a headache something was wrong. They did a CT and sent us to Cardinal Glennon Children's Hospital and confirmed it on an MRI. She really has had good neuro exams still. She did just finish 6 weeks of radiation and is currently taking Temodar. We are looking for someone doing a clinical trial involving immunotherapy. We heard of someone in Japan doing this but now heard there will be a pediatric trial at Cedars-Sinai from our doctor at Cardinal Glennon Childrens Hospital in St. Louis. We are also looking into a new trial involving Reovirus developed by Dr. Lee in Canada. Those two look to be the most promising out there. Currently they are not doing a trial for children. I noticed your son has survived for over a year and If you wouldn't mind, I was wondering if you would tell me everything you have done for him during the past year. Is he currently taking anything or involved in any trials? Have you used any unconventional therapies? We have also just come accross the use of Mistletoe (Iscodar). Have you heard of it? I am so sorry for burdening you with all of these questions. I hope your son is doing well. I hope to hear from you when you get the chance. Thank you so much. Gina W. Brookies Mom Wed, 01 Nov 2006 00:00:00 GMT Hi It was good to hear some good news with this disease. Is all still going well? Hope so... I have just finished 6 weeks of radiotheraphy and don't really know where to turn next.. I was thinking of trying the natural course, was wondering if you could tell me more about what you used and if it worked? Thanks for your time Lisa1 Mon, 13 Nov 2006 00:00:00 GMT I am more than happy to share what I have learned since Kayla's diagnosis. God has blessed us greatly. She was diagnosed on August 23, 2005 with a diffuse intrinsic pontine glioma. It was big. See the My Story portion of the website: www.caringbridge.org/visit/kaylalucius and scroll down to see all MRI results and treatments. When Kayla was diagnosed, we were immediately signed up for radiation treatments and chemo (Temodar) without giving it a second thought. As you know, you are in such panic, shock, and disbelief and we signed everything the doctors gave us - and IF we did all that to our child, we were told we would have a 10% chance of her surviving 1 year but it would probably be 6 - 9 months because her tumor appeared very aggressive. After the radiation treatments were over we had our month break of no chemo. I started going through every dipg child's website I could find. As you know, just about each child has radiation and then chemo. Most have a stable period and then practically all of them have a recurrence and die. It is just numbing. I couldn't find any dipg children that had survived on conventional medicine no matter what chemo they had used. I am sure there must be some but I do not know who. The children who survived the longest on chemo seemed to also have Dr Jeanne Wallace's diet and supplements. Some were also using chiropractic care, homeopathics, laser treatments, protocel, and other treatments. No matter what they did though, trying to detoxify while continuing with the chemicals is self defeating in my opinion. We have chosen to go after the cancer, not just the symptoms (the tumor) and we pray that Kayla's body will heal itself like it was supposed to in the first place. We prayed and prayed about it and decided that God was telling us to go against our doctors and stop the chemo and all other prescriptions. We had read a million success stories from people using alternatives to cure cancer and we logically we knew we had nothing to lose. It says right in the bible that we are to heal ourselves with the plants and it also tells how to eat properly. One of my favorite books is "The Makers Diet". So we have made this our approach. We don't know that she will survive, only God knows. We just go day by day and are thankful for what He has done and taught us. There are many ways to get your body back to a proper balance in the world of alternative medicine. We started first with Dr Wallace and then started Dr Banerji's protocol of homeopathics. We then began with our holistic doctor and learned even more. There is so much to understand and I am still at the beginning somewhere. Our bodies are amazing and God designed them to heal themselves if given the right nutrients. Everyday I study a little more and try to implement what seems doable for a 7 year old. During the radiation treatments we went to a brain tumor conference and learned of Dr Jeanne Wallace, a nutritionist. She is very informative and I HIGHLY recommend her if you don't already use her. Her website is: http://www.nutritional-solutions.net/index.html . It costs $350 for her HUGE written report and a 1 hr phone consultation (she is wonderful to talk to). It is worth the money, although overwhelming. The homeopathics, Ruta Grav 6C and Cal Phos 3X are showing good success rates in gliomas in particular. If you are not familiar, I suggest you join the Ruta Yahoo Group online. This group will tell you everything you need to know about Ruta. http://health.groups.yahoo.com/group/Ruta6/ There is an especially impressive slide presentation of Dr Banerji's with before and after scans of brain tumor patients at http://www.fidelibus.com/SOL-BRAIN.htm . We have a wonderful, Christian holistic doctor that performs laser therapy on Kayla each week and manipulates the bones around her brain stem to encourage fluid movement. He is a chiropractor and also got us started on more detoxification treatments to get the toxins out of her body. (Her hair test from Dr Wallace showed that she was loaded with heavy metals like most cancer patients.) We have been doing the laser and footbath treatments since Jan 06, right after we stopped all the prescriptions. The footbath that we use not only detoxifies through her feet but puts a negative charge in her body. Our bodies are negatively charged and there is much study done on how to heal our electrical bodies. I am sorry this is long. I feel that there is a lot of hope for these children (and anyone with cancer) and just wanted to share some other options besides the standard ones. May God's peace and mercy be with you all!! In Christ, Brenda L. Kaylas Mom Tue, 28 Nov 2006 00:00:00 GMT That is so great to read that your daughter is still here and is doing so great. What great news. My question to you, is the tumor and cancer cells still there, if the tumor is there how much has the tumor shrank since being diagnosed. I am reading what you wrote and I am getting the impression that you feel you have found a cure, that is why I am asking you if the tumor and cancer is still present in your daughter, if so how much has it shrank since being diagnosed? I feel you need to let us know because what you have wrote can be misleading and yes I did read her website and I am reading changes on the left or right side, can't remember what side, I got the impressions the tumor has started to grow but is stable on one side. Abcdefg Wed, 29 Nov 2006 00:00:00 GMT Dear Misled, Please reread my above post carefully. It is very clear. I do not believe that cancer can be healed by poisoning our bodies. I wish I would have understood this in the beginning of our journey. We poisoned our child for 5 months. Since then she has THRIVED!!! I won't know for years if we have found a cure. We are simply trying to get Kayla's immune system to recognize any cancer (if any is left) and heal itself. People in other countries use nutritional approaches to healing everyday. It is in our western culture that this is unusual. Here is an article written by a holistic nutritionist entitled "Cures for cancer already exist, but not in the realm of chemical-based medicine". http://www.newstarget.com/007211.html After 15 months of researching all kinds of treatments and talking to many other parents, this article really sums up what I believe. I am here to share this info. People don't seem to know there are other options besides what the doctors tell them. I know I didn't. Like I said above, all of our MRI's are listed on our site. We have had no growth. The tumor is a fried up ball because of radiation and our holistic doctor said because of the radiation it may never go away. He also doesn't believe it will cause us any problems either. I do not think radiation was the right treatment to begin with but we did not know there was another option in the beginning. Now we are paying for it and dealing with damage from the radiation (necrosis) of good tissue around the tumor. We are also treating this with laser therapy, additional supplements from Dr Wallace, and are considering HBOT. Anyway, posts like yours are exactly why I posted here. There are many negative posts on here telling parents to just enjoy their time. I am here to say, yes, enjoy your time AND be open to other options. I actually had someone e-mailing me after I posted our story at 8 months out angry that I had spread hope. There is someone here that is trying to get people down and I will never stop spreading hope whether Kayla survives or not. May God give you peace, Brenda Lucius Kaylas Mom Thu, 30 Nov 2006 00:00:00 GMT I am sorry that you misunderstood what I was saying. I will always have hope in some day a cure will be found, not only for this type of tumor but for all cancer's. Like I said, I have read your web site on your daughter, all I wanted was for you to please explain her MRI because I am under the impression that there is growth and not from radiation. I am trying to understand and please do not put me down and put words in my mouth that I am not saying or implying. Please help me to understand. Abcdefg Thu, 30 Nov 2006 00:00:00 GMT I read Kaylas mom's message tonight and thought I would respond.  My little girl was diagnosed with a pontine glioma in January 2005.  She had just turned one.  Because of her age the doctors didn't force the issue of radiation and chemo, though they left it as an option for us.  My wife and I both felt like we didn't want to do that to our child, so we began looking into alternative treatments.  Long story short, we ended up trying chiropractics, and have tried to control her diet by not giving her any foods with bleached or processed sugars (though that can be hard with the way food is made these days).  We have our annual MRI in the morning, which is what prompted me to even check up on what news is out there on pontine gliomas.So far my daughter is doing fantastic!  She's doing better than we thought possible when we first found out.  We were told not to expect her to see her second birthday.  We just celebrated her third birthday in style with friends all dressed as princesses.  She has no long lasting symptoms of the tumor other than an occasional crossed eye, and that seems to be getting better each month.I guess the reason I wanted to write this tonight was to let people know that, like Kaylas mom, we have found hope in other treatments for these tumors.  We use a NUCCA chiropractor.  The theory makes sense, so we continue on.  At the end of the day I understand it's all in God's hands.  If he chooses to bring my little girl home early, that's His decision, and I trust Him in that.  It can happen to any of us at any time.  I don't know if the chiropractic work is the thing that has helped my girl the most, or if it's just the good grace of God, but I know He puts people here on the earth with knowledge to help us along the way.  If that means chiropractic for my daughter, then I'm happy to go with it.  I just never felt good about putting chemicals in my child to try to help her.  I don't want to knock conventional medicine.  I'm so grateful for it.  I believe both conventional and holistic have a place.  We'll find out a lot more tomorrow after the MRI.  I'm going in nervous, but optimistic because of the progress my girl has made.  I hope the tumor is gone, but quite frankly, I'll take stable, considering the normal prognosis for this type of tumor.  It's been two years, and she's never been better! Brinleys Dad Fri, 15 Dec 2006 00:00:00 GMT Brenda,I just read the article on NewsTarget.com and I printed it for my sister-in-law Nikki to read.  I spoke to you a few months ago about my neice Jenna, I wish we had known about natural alternatives earlier on.  Jenna isn't doing so well, but we also still have hope and we are not giving up.  She is still off all chemo and is on an all natural diet and so on and are doing the foot therapy.  I just wanted to applaud you and send out the message to other parents as well, to go with alternative early on in the diagnosis. I believe it is sooo important!!!  Parents going through this horrible ordeal are overwhelmed and we are programmed to believe in traditional medicine. There is no cure for this.  We have to believe that our bodies can heal themselves.   I just hope other parents try this as well.   God Bless You and I keep Kayla in my prayers! Jennasaunt Fri, 12 Jan 2007 00:00:00 GMT I am thrilled to see the postive comments being made on this board regarding alternative treatments for cancer. I KNOW from experience that there are a number of alternatives that are successful and without hurting the body in any way. In fact, when one begins the diet and supplementation etc. you can actually see the vigor and good health return. In my case I was diagnosed in May 2004 with a 10cmx10cm tumour in my chest which had caused the collapse of part of my right lung and I also had a cancerous lymph node on my heart. I was told I would need the strongest chemo in order to "perhaps" survive. I refused that and instead began researching alternatives and through the counselling of a good friend of my sons who had been cured of brain cancer at thirteen years of age by alternative means, and stomach cancer almost thirty years later again by alternative means only, I attended a Wellness Clinic recommended by him and began strictly following the Regimen for Detoxification and Regeneration along with the supplementations that the Naturopath there recommended. I am considering having a CT scan done sometime soon just because I am curious as to what might be going on in my chest. I have absolutely no symptoms of illness and actually feel stronger and healthier than I ever have before. I applaude you Kayla's mother.....What great courage it took to go against the Doctor's advice. I am surprised you were allowed to do so. I have read about cases where the courts have actually intervened at the request of the oncologist and taken custody away from the parents and FORCED the child to have chemo. Not to frighten anyone but I would highly recommend taking a look at the following website. This is information everyone should have before making the life altering decision to take chemo. http://whale.to/v/horwin1.html If anyone is interested in the Regimen for Detoxification etc. please send me a private message. It is too large a file to post here. It is free to anyone interested. Shemay Shemay Fri, 12 Jan 2007 00:00:00 GMT I would appreciate it if you could send me the file on the Regimen for Detoxification etc.  My email address is --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Thanks. Littlesis Fri, 12 Jan 2007 00:00:00 GMT Just reading the message boards for Diffuse Pontine Glioma & came across yours. My beautiful 8 year old daughter was diagnosed 26/1/2007 with this devastating illness. My husband & I are still in shock. Jayde is still getting radiotherapy treatment here in Australia, but the news is not good. All that will do is shrink the tumour untill it starts to grow again & we have been told all we can do is take our little girl home afterwards untill such times as it takes to grow again. We have been told Jayde has approx 12 months left. I am finding it very hard to deal with & to tell the truth all that keeps me going is my 6 year old son & Jayde (the time she has left)...my question is - how do you tell a child she is going to die? We have told Jayde she has a small lump at the back of her neck & that the doctors are fixing it. We want Jaydes time left to be as happy as she possibly can be ...how do other parents deal with this??? Absolutely devastated Mum Mum of Jayde Fri, 23 Feb 2007 00:00:00 GMT I am so sorry to her about your daughter.  I understand, my daughter was diagnosed with a DIPG on Aug. 3, 2005.  I wish I could say she is doing fine but she passed away on Dec. 23, 2006.  Please do not give up hope.  Every child is different and someday we have to find a cure.  I never told Alicia she was going to die, simply because I could not be certain that was the truth.  Alicia started having symptoms again in Aug of 2006.  After Thanksgiving, her symptoms were worse, Alicia told us she was going to die.  I have heard this before, other children have done the same.  It's like they know what is happening to them.  I feel this is a subject you can wait to discuss and only if needed.  Enjoy today!  Hug and kiss your little girl, take lots of pictures, record her voice, do it today don't wait till tomorrow.  Here are a couple of sites where you can find many children who have pontine gliomas.  These families are wonderful.  If you have any questions regarding treatments, problems, questions etc. each family will share their experience. http://www.jjsmiracle.com/ look under other children and lifted uphttp://www.prayersfrommaria.org/ourChildren.html http://www.nomorewasteddays.com/ look at other DPG kids and Information help, email this address and request to join.  postmaster@nomorewasteddays.com    After joining when you post an email it will go out to many pontine glioma parents.  There is also an online support group  http://health.groups.yahoo.com/group/Pediatricbraintumors/ I hope this informations helps you.  If there is anything I can do please email me -- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html -- Take care and give your daughter a big hug for me.With Hope,Christinemother of an angel named Aliciawww.aliciahopefund.com Christinems Sun, 25 Feb 2007 00:00:00 GMT  On 10/18/2005 Nosnod wrote:my son was dx. with IDPG on 9-3-o3.We have study many diffrent tretmets.he finished his rad, will be 2 years 11-7-03. our little guy is still doing very good is now in kindergarten and loveing it.he took gleevec for 9 months,he lost all the steroid lbs plus a lot more he was very sick while on the gleevec.chemotherapy has shown no help to children with brain steem gliomas.you must ask qustions any and all that you can think of, write them down so you don't forget anything. always remain calm when talking to the Dr. so that you don't miss any thing that they say to you. ask God what he would have you do before doing anything.our son has been on ruta grav and calc phos for 15 months.I am going to check out josiahupdates.com to see if I can find a way to talk to other people and familys I'm not very good with the pc. my son was only given 10 to 12 month at best, that 26 month and 15 days ago.I would sure appreciate any update you have on your sons condition.  My niece was diagnosed last march 2006 with same tumor and we now have her on the ruta6c calc/phosphate. Please send me an update!!  ThanksSue Cleaner Tue, 06 Mar 2007 00:00:00 GMT Sue,  My niece was diagnosed two weeks ago with a tumor, yesterday they finally confirmed that it was a dipg, she is not doing well at all, she can barely speak, cant walk, and is slowly getting worse. She is going to start radiation today and I am wondering if you could tell me a little about what has worked for yuor niece, and if you are already taking ruta 6.  Thanks,  mary Mlorr Thu, 15 Mar 2007 00:00:00 GMT  On 3/15/2007 Mlorr wrote:Sue,  My niece was diagnosed two weeks ago with a tumor, yesterday they finally confirmed that it was a dipg, she is not doing well at all, she can barely speak, cant walk, and is slowly getting worse. She is going to start radiation today and I am wondering if you could tell me a little about what has worked for yuor niece, and if you are already taking ruta 6.  Thanks,  mary  Cleaner Mon, 19 Mar 2007 00:00:00 GMT  On 3/15/2007 Mlorr wrote:Sue,  My niece was diagnosed two weeks ago with a tumor, yesterday they finally confirmed that it was a dipg, she is not doing well at all, she can barely speak, cant walk, and is slowly getting worse. She is going to start radiation today and I am wondering if you could tell me a little about what has worked for yuor niece, and if you are already taking ruta 6.  Thanks,  maryMarySo sorry to hear of your niece's diagnosis.  It is an AWFUL tumor!!  My niece is in the final stages of the cancer and is not doing well.  I would however strongly recommend that you look into the ruta6c calc/phosphate as that did help my niece, we just found it too late, I fear.  Also other people that I have read have skipped chemo and radiation in favor of chiropractic and homeopathic medicines and their kids seem to be doing good.   Also I would recommend that you investigate the Burzynski clinic.  Go on his website and read all you can about his treatment.  I believe he is currently doing a study on dipg that he just started this spring.  Doc's don't like to send you to his clinic, but it might be worth checking into.  Look into all you options closely!!!  Best wishes to you!!Sue Cleaner Mon, 19 Mar 2007 00:00:00 GMT  On 5/20/2005 Dpgmom wrote:Cams Mom, My 11 yr old son was diagnosed with dpg on 3/11/05, he is being treated at St Jude, finished with radiation and is on a clinical trial taking Zarnestra (aka tipifarnib). So far he's doing well, only time will realy tell, but your message said that you had a lot of information and as you've been reseaching for longer I would be grateful for your knowledge. One thing we are doing is paying close attention to nutrition, something that is overlooked by conventional doctors and we feel very important, we have found a nutritionist in Utah that specialises in brain tumors and specifically gliomas. Max's only symptoms so far are double vision and a very slight movement on right side in certain tests. Look forward to hearing from you. ThanksHi -my best friend's 6 yr. old daughter was just diagnosed with dpg this month-could you give me the nutrionist's name in Utah?  This would be a great help as we have hardly any info on this.THanks so much!Tara Gracious8 Thu, 22 Mar 2007 00:00:00 GMT hi my friends daughter has been diagnosed with diffuse pontine glioma, can anyone give me more information please  Martine Fri, 22 Jun 2007 00:00:00 GMT  On 4/6/2005 Cams Mom wrote:My son was diagnosed with a diffuse pontine glioma 9/26/2004. We completed radiation and are currently doing chemo. He is doing excellant! I have a lot of information.hi Cams Mom, my daughter was just diagnosed with a pontine glioma on 7/10/07 i would absolutely love any information that u have.  i hope to hear from u soon.   thank you. melissa & scott winchell ourbabygirl Sun, 15 Jul 2007 00:00:00 GMT my daughter has adiffuse pontine brain tumor. she was diagnoise in february these year she dont seem to be doing all that great .she has done five weeks of radiation. i want to know what you are doing for your son.i looking for a big miracle jrjalesha Sun, 09 Sep 2007 00:00:00 GMT  On 4/6/2005 Cams Mom wrote:My son was diagnosed with a diffuse pontine glioma 9/26/2004. We completed radiation and are currently doing chemo. He is doing excellant! I have a lot of information. Hello,My niece who is 13 years old has just been diagnosed withdiffuse pontine glioma. As you can imagine I am devasted. It sunds like your son has had a great success high survival rate since hea was diagnosed in 2004. Would you please give me more information regarding his treatment and your process? It would be greatly appreciated. Thank you!Leighc Leighc Wed, 26 Sep 2007 00:00:00 GMT Dear parents and caregivers, I want to share some good resources that may be helpful to especially those who have children newly diagnosed with diffuse intrinsic pontine glioma.  You can go to http://www.prayersfrommaria.org/ourChildren.html to find other children fighting this tumor and the many that have passed from it.  All of these parents are very kind and most are more than willing to help you in ANY possible way they can.  There is a wonderful nutritionist that specializes in brain tumors. Dr. Jeanne Wallace is very knowledgeable and can tell you supplements, herbs, and diet suggestions that will help control the cancer.  The homeopathics, Ruta Grav 6C and Cal Phos 3X are showing good success rates in gliomas in particular.  If you are not familiar, I suggest you join the Ruta6 Yahoo Group.  Call around and see if you can find a good holistic/chiropractic doctor in your area.  The man we found has been key in our daughters healing and has taught us volumes.  He introduced us to low level laser therapy and methods of detoxification, including footbaths to pull heavy metals from our daughters body.  Also, our chiropractor manipulates the bones around her brain stem to encourage fluid movement, works with us on diet, examines which supplements work best for her and how much of them to give her, and encourages us with Christian thinking. The latest treatment I have started about 3 months ago is a properly combined mixture of cottage cheese and flaxseed oil once a day.  The treatment is a large part of the Budwig Diet and the science behind it is very solid and Kayla has always loved cottage cheese.  Actually the entire Budwig Diet has proven very successful however we are only doing a portion of it.  Look in the files of the flax oil/cottage cheese yahoo group to learn more.  There are MANY other wonderful and non toxic ways to heal.  I have only started to discover them all.  Other parents have used other alternative treatments successfully as well.  The purpose of this letter is to let parents know that other options exist besides what the doctors tell you.  I know our culture revolves around conventional medicine so it is easy to think that the only way to heal is through radiation and various chemotherapies.  This was my mindset at the beginning too.  Just as the bible points out, know that there are nutrients that God put here specifically to heal us.     Trust in God to get you through whatever it is you are going through. No matter where you are or what you have done, with a pure heart you can ask for His help 24/7. This is not a guarantee that you will have the outcome you desire but it is a guarantee that you will get through it with grace and mercy. You will be blessed.    In Christ,Brenda Luciuswww.caringbridge.org/visit/kaylaluciusThe latest treatment I have started about 3 months ago is a properly combined mixture of cottage cheese and flaxseed oil once a day.  The treatment is a large part of the Budwig Diet and the science behind it is very solid and Kayla has always loved cottage cheese.  Actually the entire Budwig Diet has proven very successful however we are only doing a portion of it.  Look in the files of the flax oil/cottage cheese yahoo group to learn more.  There are MANY other wonderful and non toxic ways to heal.  I have only started to discover them all.  Other parents have used other alternative treatments successfully as well.  The purpose of this letter is to let parents know that other options exist besides what the doctors tell you.  I know our culture revolves around conventional medicine so it is easy to think that the only way to heal is through radiation and various chemotherapies.  This was my mindset at the beginning too.  Just as the bible points out, know that there are nutrients that God put here specifically to heal us.     Trust in God to get you through whatever it is you are going through. No matter where you are or what you have done, with a pure heart you can ask for His help 24/7. This is not a guarantee that you will have the outcome you desire but it is a guarantee that you will get through it with grace and mercy. You will be blessed.    In Christ,Brenda Luciuswww.caringbridge.org/visit/kaylalucius Kaylas Mom Fri, 28 Sep 2007 00:00:00 GMT hi my daughter was just diagnosed with this dpg you say you have alot of info please share we are completely lost and devasted, please help us virg76 Wed, 09 Apr 2008 00:00:00 GMT On February 15,2008 my daughter Sadie was diagnosed with pontine glioma by Texas Childrens Hospital. It was the most devastating news any parent could receive. Here they wanted to give her radiation treatments, and nothing more could be done. A week later I moved Sadie to MD Anderson Cancer Center (suppose to be the best hospital). There they wanted to give Sadie Chemo and Radiation treatments. March 5,2008 Sadie began her treatments, by Sunday Sadie began to get very tired and was sleeping a lot. I brought this the Drs attention and they told it was because of the Chemo and Radiation treatments, that she was tired. On Monday she did not recieve the chemo but did get radiation. By Tuesday when she was to be discharged she was having kidney failure. On Wednesday she began to have runny bowl movements,and vomitting and I brought that to the drs attention, they again told me it was the chemo. Wednesday she also did not recieve radiation treatment because she began to have a real bad cough with a lot of secretion in it and it was difficult to sedate her without her choking. So they canceled it. Thursday was the worse night of our lives. Sadie began to have bloody noses was coughing up blood and basically could not breath, they nurses were in and out all night and they gave her sooo many mediscines it was unreal. We were up 24 hours and all Sadie would say is "I dont wanna die." Friday morning is when all this got worse.  Sadie would try to talk to me and her voice was sooo hoarse.The drs came in and said to me that she was gonna have to be put in the icu, so they could keep a closer eye on her and because she was having a hard time breathing, and because the tumor was getting bigger and was taking over her vocal cords, and they were shutting down. So that she needed to be put on life support. Once  we got into the icu it was explained to me that the life support was a temporary thing. That they would be able to give her a tracheotomy That this was just a temporary thing so that she could get radiation. Well that was not the case. They gave her a catscan and it was determined that Sadie had something else in her brain along with the tumor. That we would not be able to find out til we got her and Mri. Which would be on monday. Monday came and we waited all day long for this MRI to determine what to do, The drs had said to us that she had fluid in her lungs her kidneys had shutdown and now her liver was also shutting down, So we basically had to make a decision on what kind of life we wanted for Sadie. We would not be able to give her a good qualtiy of life with what was going on. We did not end up getting an MRI til Monday night at 11. The MRI ppl then explained to me that they had been trying to get in touch with ICU to bring Sadie down to the unit for four hours. Tuesday morning came and the bad news came. Sadie had another condition that I cannot remember the name of but that it was reversable, but in Sadies condition it was so bad that it wasnt. Her brain looked as if someone literally took her and tried to drown her. She had a lot of water and blood in hr brain. Then they continued to tell me that "The good thing is we got her tumor to shrink in a week" "It even has a hole in it" At this point I am sooo devastated. They continued to tell me that my daughter was gone. There was nothing I could do. Brain was gone liver was gone kidneys gone lungs had fluid in them. It was just a matter of time til the potassium would rise and make her heart stop beating. They did not bring me a kidney specialist til the day Sadie passed away. Sadie passed away March 20,2008. The thing is Sadie did not die of the tumor. We dont even know what happened to her. All I can say is this is a very devastating tumor. And please please make the right choices and the procedures that yall chose to try to make them better. In my case I think I could have made a better choice. I feel as if I helped kill my child. I miss her sooo much and have fallen into a deep depression. Sadie left 5 siblings behind and they too are having a real hard time dealing with it. I pray each night for those who have this tumor. And there is not a day that doesnt go by that I do not think of Sadie. She was the star of the family (always shining bright.) Very happy and outgoing. I did make a web page for her www.caringbridge.org/visit/sadiemareesmith  Good luck to all those who get treatment for this tumor. I pray that one day we can find a cure for it. MissingSadie Mon, 28 Apr 2008 00:00:00 GMT HelloI'm sorry for my English. I hope you can understand me. In 2005 your son was diagnosed with a diffuse pontine glioma. I wanna know how is he doing. I have a ten years old cousin. He was diagnised one month ago. I would like to receive all the information that you have. Please, help me! My family is desperate. My e-mail is --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- . Thank you. klorena Sun, 31 Aug 2008 00:00:00 GMT