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| Author | Topic: Angry |
| ???????? |
posted 11/15/06 3:31 AM
I came across this website through the CancerKidsHome Page. My son, Stephen Brice Keatts, was 10 yrs. old when he was diagnosed w/his brain stem tumor (multiglioma blatoma grade IV). He complained of dizziness on a Friday morning and I took him to his lifelong pediatrician. They said he had a virus. The next day, he could not walk straight and his left side was droopy. I took him back to his pediatrician who sent us to the nearby hospital for tests. My son endured an MRI (in which he threw up in) and I was told in a cold manner that he had a brainstem glioma Grade IV and that he had 9 months to live. I can't go on any further at this point, but will continue later. There's so much that the parent is told and doesn't understand. And there's no time to research and make informative decisions. We trust the doctors. Right????? I didn't tell Brice about his prognosis or that he had cancer, but told him that he was very sick and that the doctors were trying to make him better,as I felt that it would scare him. Was I wrong? There's so much more to this story and I will continue later because I can't go through the rest of it now. |
| Mike Curry |
posted 11/15/06 3:44 AM
Wrong? No there really is no wrong choice it in what you do when it comes to your child. You make your decision with the info you have available. It is also Ok to be angry every parent who visits our website has been angry with this cancer. You have to make the decision on what to tell your child based on your relationship with him, you know hime best. Most children at some point ask what they are going through and waht is happeing then it gets tough. Because we are dealing with a very rare and unknown disease the Dr's sometimes just do not know. In the last 3 years have been dealing with Pontine Glioma I have heard some very interesting (crazy to me) comments. Just by reading your post I can see that you are upset and have every right to be. Finish your post when you are able, we will help where we can. |
| Jim |
posted 11/16/06 11:06 AM
The way I view it, it's love so be angry, you have every right to be. There are no words I can give you to make what you feel go away but if there is a positive to this, you are not alone in this struggle. If there is anything we can do, please don't hesitate to ask. Jim http://www.jjsmiracle.com |
| ??????????? |
posted 11/17/06 2:03 AM
Thank you for your quick responses. I've never communicated online w/others, but have found that it is easier because u have experienced the same pain, unlike family/friends who offer advice (meaning well), but most of the time I resent. Also, with this communication, I can respond when I'm ready. Thank you all so much for being there !!!! |
| Jim |
posted 11/18/06 12:46 AM
Mike has set up a pretty nice board here where we can get together and scratch our heads, vent, etc. I've noticed that many other families going through this are also creating and communictaing via web sites (carepage/carebridge/etc). I know we would probably still be in the dark if Mike hadn't put this site up. It allowed us to realize that we were not alone. We read and keep up on the other children, look into and exchange treatment options, etc. Please, please, please, look into this. It does require quite a bit of reading (and some pain does accompany) but you'll learn a ton from past experiences and language the doctors use. http://www.jjsmiracle.com |
| ??????????? |
posted 11/19/06 1:54 AM
I have been looking around the web for over a year to find a place that I felt comfortable "exposing" my feelings about my son's illness and demise. You are right in that Mike has established a place of comfort and that you guys have made me feel that my feelings are okay. I'm still in a "stage?" that I'm not ready to know that there are better treatments for others with the same illness. I know it sounds selfish and I don't want others to experience what my child did, but it's how I feel. My son told me that he was dizzy one day and I took him to his pediatrician (he was taken as was scheduled or necessary). His ped told me that he had a virus. The next day, his teacher called me at work and said that he wasn't acting himself (he was normally very outgoing and was a straight A student). By the time I got to the school, he couldn't walk straight and was very scared. I took him to his ped. and he sent me to Duke. After an MRI (which I had no clue what that was) they told me, no compassion at all, that he had the tumor and had 9 months to live. They didn't perform a CT scan and he was bleeding in his brain during this entire time. He had a stroke the next day and lived the rest of his 9 months in a wheelchair. He went from being a child,that at age 4, he rode a Kawasaki motorcycle, did backflips off of a diving board and was a popular student in school ; to not being able to sit up, speak (fortunately i taught him the sign language alphabet at an early age and was surprised that he remembered) and the left side of his body was immobile. He went through physical, speech and occupational therapies. He NEVER complained one time. Guess I've complained enough for now. If my entries are not the type that this site is looking for, pls let me know. Thanks for responding !! |
| Mike Curry |
posted 11/19/06 7:42 AM
First of all, no you have not gotten to anything to sensitive and I pretty much let people select and post the topics as they wish. The only thing I ask is not to get to graffic or use offensive language. Thank you for the kind words about Michael's site. Three years ago there was not a lot of places for me to go to talk about DPG and its effect. There are a lot of sites now but not a lot open to discussion but there are a few. So this is why the site is set up this way, I want everyone to have a place to go and talk, get their feelings out there with people who understand what we go through. You have it with us, 31 people have read your post as you can see not everyone post here but a few will e-mail me with responses. Like I said we are here to help anyway we can. Also there are not a lot of treatments out there that can help with the symptoms but none that cure yet. There are more treatments available now than with Michael 3 years ago but they have not seemed to do any better than the others. I look at things everyday and hope one of them cures the disease, but none can help Michael now. I know that I want the cure found so that other children do not have to go through what our kids did go through. I also do not want anymore parents to have to watch their child suffer. The grieving process is a matter of what you call a stage, how long each stage passes is hard to say, some or worse than others. The holidays and birthdays the toughest. I know that a lot of parents out there that talk to us are going to go through the 1st holidays without thier child, my heart and prayers to you and all of them. All i can tell you is talk to your child he can hear you and I truly believe that. After michael passed away we would see things and say wow that reminds me so much of Michael, usually with a tear or two. After a few of these I got to thinking that dang maybe that is Michael telling us here I am and I am ok. One other thing that I have thought for awhile and maybe this will make sense but maybe not, I have never brought this up to another parent before but maybe its time to put it out there. before Michael passed away he was living up to our expectations. Now we, my wife and I, have to live up to his, Hopefully that makes some kind of sense. Michael is so much a part of our lives everyday. I hope your son is a part of yours, Michael did not die in our hearts he lives on there and will forever. We draw comfort from that. The pain of his passing will never pass but the love he had for us and us for him lives on. No one can take that from us and no one can take it from you. Love, Hope and Faith |
| ??????????? |
posted 11/21/06 2:52 AM
Thank you so much, as I feel deep in my heart the same way. Brice may have, and did so, live up to our expectations and I so much hope that we lived up to his. He is in my thoughts and heart everyday and will always be. I would never want another child to feel his pain or a parent to experinece this. I agree wholeheartedly that the grieving process is dependant upon the individual. Brice experienced "horrible" symptoms on Thanksgiving Day and as bad as I wanted things to be okay, I knew in my heart that it wasn't good. We made the best of it and spent the day with my family who had always "overlooked" his illness to make him feel normal. Even though I had to feed him and he could barely swallow, he had a fun Thanksgiving. Thanks again for allowing me to post my thoughts. |
| ??????????? |
posted 11/21/06 3:09 AM
A last thought: I want everyone who reads this to know that I'm still angry about what happened with Brice and that I have yet to see a "100k race or event" to raise money for this type of cancer. I do appreciate this site which allows me to express my feelings. I also feel that this site gives all of us the opportunity to talk our way through our feelings. Whether we agree or disagree with one another, we can work it out here. My blessings are to us all |
| Kathleen |
posted 12/16/06 8:25 PM
Brice will be in my prayers now forever.My little cousin, Colby, went to heaven this week, I feel better knowing a wonderful child like Brice was there to meet him. Anger? You Bet! This website is wonderful, to vent and pass along ALL your feelings. Thank you, Mike and family!! |
| Tore Hatlen |
posted 12/21/06 10:25 PM
You're right in that there doesn't seem to be any kind of large fund raiser for this kind of cancer, like there is for other ones. We feel that it's becuase it's a rare cancer and only 150-200 kids are diagnosed every year. It's much easier to give money to already established groups for treatments that have been tested and work. We've also found that many families want to raise money and find a way to donate in their childs name. That means there are in some cases, dozens of smaller funds set up donating to this hospital or that clinic for treatment and research. More often then not, a sizable portion of that money gets lost in administration costs and little actualy goes to research. We need to find a way get all those smaller funds working together to be effective. We're going to be working with an already established foundation that has a relationship with our local children's hospital with procedures in place already. That way more of the money will go to research. It's a long road to finding a cure, let alone finding the cause but together we can make a difference. http://www.hannahsheroes.ca our site dedicated to our daughter Hannah |
| Mike Curry |
posted 12/22/06 4:59 PM
Tore you are correct about the funds getting lost. We have worked closely with Texas Children's Hospital establishing that the funds we donate are used strictly for pontine Glioma research. We also have 5 different familes working with us. Since we have established ourselves over the last 2-1/2 years this maes it easier for all. we do donate the funds in their childs name. Working together is the key. |
| jenny harpster |
posted 12/31/06 1:57 AM
You guys are so right about the lack of knowledge and education in the general public about this tumor. I know it is supposed to be very rare but 4 children in our area have been diagnosed within the past several years. I know its a long shot, but I e-mail the Oprah show about once or twice a month, suggesting that she dedicate a show about this tumor. We spent our first Christmas without Hannah this year and it was hard. Bless you Mike for all that you do and all the support given while Hannah was alive. Jenny |
| Mike Curry |
posted 1/1/07 4:43 AM
Jenny,Interesting I have also e-mailed oprah seems we continue to think along the same lines. Also i recieved another instant message today with a mom who lost a child still looking for the common denomonator between our children. Anyone have a suggestion to how we can began to compare our kids lives? It could be anything. But we must start somewhere and somehow. |
| Gina |
posted 1/2/07 5:14 AM
Hi, I was just reading these postings and looking for information. You are so right about not enough notice of this type of cancer/tumor. My daughter, Brooke was diagnosed Aug. 29, 2006. Life has been so unbearable at times. I understand the anger. I noticed that you talked about emailing Oprah to get her to have a show for recognition of this type of tumor. One of my mom's best friends emails Oprah several times a week about Brooke and we have heard nothing. I know they are very busy with probably thousands of emails to review but, maybe by seeing a common email about this tumor will help them to realize they need to do something! Sometimes it's not until famous people talk about a serious issue that gets it recognized, unfortunately. |
| Tore Hatlen |
posted 1/3/07 3:40 PM
I also wrote to Oprah this week. I figured that if enough people wrote suggesting a show on Pediatric brain tumors then maybe a show would be done on it. http://www.hannahsheroes.ca our site dedicated to our daughter Hannah |
| Richard McGowan (Matthew's Dad) |
posted 1/6/07 5:09 PM
Can anyone send me a copy of their letter and the address to send it to Oprah. I would be glad to send a letter also. My son Matthew is battling this monster also. I haven't heard his voice since July 30th and would love to get the story on Oprah. This public needs to know more about this tumor so we can get more funding to stop it. I want to help in anyway I can. I know it probably won't help Matthew, but if it can help future children and their families, then it will have been worth it.Thanks,Rich http://www.caringbridge.org/visit/matthewmcgowan Matthew's website |
| Gina (Brooke's mom) |
posted 1/9/07 3:58 AM
Hi, I went to Oprah.com and clicked on Be on the Show. Under "Regular Features" I clicked on, "We Want Your Show Ideas." I then entered my info and typed a summary of my story (they only allow 2000 words)and of how many children are diagnosed yearly and about how we need her help to bring awareness to this horrible brain stem tumor. That there is not enough recognition of this tumor therefore not enough money for research etc. Also, that all of us need her help. I can't remember what else. But, I am going to keep emailing her every week. |
| ?????????? |
posted 1/23/07 0:24 AM
I've written to Oprah and Montel Williams multiple times and have not received a response (other than thank you). I wonder how they determine what is a "hot ratings topic"? As an attention getter, Maybe we should all email them weekly with the same subject line. Thoughts??? |
| Brigid O'Donoghue |
posted 1/27/07 11:13 PM
When you think your life has been difficult and some times you feel so depressed you don’t even want to get out of bed; listen to what you are thinking about right at that moment! When you feel like you are rolling down a hill and you wish you would just get to the bottom; remember that’s when you will feel the most pain, but you will also have a clear understanding of the reasoning behind it. The Lord works in many ways; he will never leave you alone; he is always there for you! Six years ago, I founded a Christian wish granting charity for children with disabilities and life threatening illnesses. We are an all volunteer team and have granted over 3,500 wishes! www.childswish.com if any of you have a child or know of a child I can grant a FREE outdoor wish to please contact me. God bless you all!(when you go on the website look at the gallery and the "Forum Links) you will see hundreds of pictures and read about lots of wishes granted.Brigid O’Donoghue,President and FounderUnited Special Sportsman Alliancebiotec@ceas.coop http://www.childswish.com Christian Wish Granting Charity for children with disabilities and critical illnesses |
| ?????????? |
posted 2/1/07 4:22 AM
The organization that u r promoting sounds like it could help many. It sounds like many can benefit from it and I hope it does. However, it seems to me like what you posted is not from experience. Have you lost a child to this type of tumor? After reading your email, I don't understand what you mean by "listen to what you are thinking about at that moment". From my experience, it's not a "moment" that I think about at this point , but ALL of it. I think that your promotions are well meant and I apologize if I'm overstepping bounds on this site. |
| Julie Dornisch |
posted 2/15/07 1:01 AM
I've been off websites for sometime, but have been "introduced" recently to many of your children's stories, beginning with Grant Truhler. My name is Julie Dornisch, and we are approaching the 3rd anniversary of my daughter's(Maddie)death.(May 6)I think it is wonderful that you have established this forum as a means for information exchange and support. You are all correct in your statements that too little attention is brought to pediatric brain tumors on the whole, and more specifically, pontine gliomas.I look forward to connecting with you all, and using our boundless love for our children as a well-powered vehicle to change this fact.With love,Julie-Maddie's mom www.caringbridge.org/mn/maddie http://caringbridge.org/mn/maddie |
| Sharon |
posted 2/23/07 4:07 AM
I lost my 12 yr. old son 3 1/2 yrs ago to a bsg. I was also told he had less than a year to live and radiation would give him "quality" of life and that was it. The doctor was open to looking into trials and when there was nothing left we did put him into a phase 1 clinical trial. At the time we did not have a working computer and I did not realize how many children were diagnosed with this tumor. My brother in law did alot of research and did have alot of suggestions and I'll never forget the doctor pretty much laughed and said we would need alot of money. Unfortunately it was getting too late. Stephen was declining rapidly. So...I too believed the doctor knew what he was talking about and didn't press too much further. Another thing is my sister in law had sent me a video about an Oprah show where she had Dr. Burzynski on years ago speaking about this type of tumor. I wish I had kept it...I don't remember when it was that he was on but she did do a show on this matter so maybe she will respond with a follow up! http://www.geocities.com/sjmp001/InLovingMemoryofStephen.html |
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