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Guestbook

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Debbie Biase
Debbie Biase
Hi Healeys!
We all pray EVERY day at 10:00 am...right after Circle Time. We were blessed to have Ashton & Brooke in our lives...they added a lot of fun, laughter & love. We wish only the best for all of you & we are praying hard for a miracle for your little "diva" which is how we remember the little chubby cheeked smiling full of fun Brooke. Keep up the great work...you both are AMAZING.
 Much Love & prayers   
Debbie & Wendy
christine schipani
christine schipani
I sent my last post before i was done. The girl that went to Dr Petro (Findlay, Ohio) on Caringbridge and her name is Kayla Lucius. You may find other information on her site that may be something you would like to pursue. Also Faith Griffin has a site on Caringbridge as well and her doctors are listed on her site as well. If you have any questions and I can provide any answers you can contact me. Christine Schipani-Lamhing 732-887-5151 christineschipani@gmail.com
christine schipani
christine schipani
We watched our close family friend Faith Griffin fight a battle against DIPG. Faith was diagnosed at 4 yrs old and sadly passed days before her 6th birthday. She did participate in a study drug called Nimotuzumab. I don't know if you have ever heard of it or if it would help Brooke. Sometimes I think it's "the time" they administer the drug/treatment that makes a difference. But what do I know. I do know, as you have found out, there is so much red tape involved in getting into these studies and maybe sometimes the window of opportunity is lost and when the child is approved the disease has progressed to a point that the treatment won't be as effective as it may have been if it was administered before the advanced stages of the tumor. I am not a medical doctor, I'm just a mom, an aunt and a friend that have watched too many kids battle DIPG. However, Faith did visit a doctor in Ohio named Dr Petro. He is a holistic doctor. They found him through Kayla who was diagnosed with DIPG at 5 yrs old and lived until ten years old, 3 of the years being "symptom free". This brings me back to the window of time. How come some patients benefit more than others? So if Faith had DIPG for a year before she started the Nimotuzumab and over a year before seeing Dr Petro, maybe if someone like Brooke who is less than 6 months into her battle might benefit now before the tumor gets out of control. So that is why I am passing this information on to you. Of course it is your personal decision if you choose to research the study and/or the doctor. (The doctor is not affiliated with the study).
christine schipani
christine schipani
I sent my last post before i was done. The girl that went to Dr Petro (Findlay, Ohio) on Caringbridge and her name is Kayla Lucius. You may find other information on her site that may be something you would like to pursue. Also Faith Griffin has a site on Caringbridge as well and her doctors are listed on her site as well. If you have any questions and I can provide any answers you can contact me. Christine Schipani-Lamhing 732-887-5151 christineschipani@gmail.com
Debbie Biase
Debbie Biase
Hi Healeys!
We all pray EVERY day at 10:00 am...right after Circle Time. We were blessed to have Ashton & Brooke in our lives...they added a lot of fun, laughter & love. We wish only the best for all of you & we are praying hard for a miracle for your little "diva" which is how we remember the little chubby cheeked smiling full of fun Brooke. Keep up the great work...you both are AMAZING.
 Much Love & prayers   
Debbie & Wendy
christine schipani
christine schipani
We watched our close family friend Faith Griffin fight a battle against DIPG. Faith was diagnosed at 4 yrs old and sadly passed days before her 6th birthday. She did participate in a study drug called Nimotuzumab. I don't know if you have ever heard of it or if it would help Brooke. Sometimes I think it's "the time" they administer the drug/treatment that makes a difference. But what do I know. I do know, as you have found out, there is so much red tape involved in getting into these studies and maybe sometimes the window of opportunity is lost and when the child is approved the disease has progressed to a point that the treatment won't be as effective as it may have been if it was administered before the advanced stages of the tumor. I am not a medical doctor, I'm just a mom, an aunt and a friend that have watched too many kids battle DIPG. However, Faith did visit a doctor in Ohio named Dr Petro. He is a holistic doctor. They found him through Kayla who was diagnosed with DIPG at 5 yrs old and lived until ten years old, 3 of the years being "symptom free". This brings me back to the window of time. How come some patients benefit more than others? So if Faith had DIPG for a year before she started the Nimotuzumab and over a year before seeing Dr Petro, maybe if someone like Brooke who is less than 6 months into her battle might benefit now before the tumor gets out of control. So that is why I am passing this information on to you. Of course it is your personal decision if you choose to research the study and/or the doctor. (The doctor is not affiliated with the study).
christine schipani
christine schipani
I sent my last post before i was done. The girl that went to Dr Petro (Findlay, Ohio) on Caringbridge and her name is Kayla Lucius. You may find other information on her site that may be something you would like to pursue. Also Faith Griffin has a site on Caringbridge as well and her doctors are listed on her site as well. If you have any questions and I can provide any answers you can contact me. Christine Schipani-Lamhing 732-887-5151 christineschipani@gmail.com
Debbie Biase
Debbie Biase
Hi Healeys!
We all pray EVERY day at 10:00 am...right after Circle Time. We were blessed to have Ashton & Brooke in our lives...they added a lot of fun, laughter & love. We wish only the best for all of you & we are praying hard for a miracle for your little "diva" which is how we remember the little chubby cheeked smiling full of fun Brooke. Keep up the great work...you both are AMAZING.
 Much Love & prayers   
Debbie & Wendy
christine schipani
christine schipani
We watched our close family friend Faith Griffin fight a battle against DIPG. Faith was diagnosed at 4 yrs old and sadly passed days before her 6th birthday. She did participate in a study drug called Nimotuzumab. I don't know if you have ever heard of it or if it would help Brooke. Sometimes I think it's "the time" they administer the drug/treatment that makes a difference. But what do I know. I do know, as you have found out, there is so much red tape involved in getting into these studies and maybe sometimes the window of opportunity is lost and when the child is approved the disease has progressed to a point that the treatment won't be as effective as it may have been if it was administered before the advanced stages of the tumor. I am not a medical doctor, I'm just a mom, an aunt and a friend that have watched too many kids battle DIPG. However, Faith did visit a doctor in Ohio named Dr Petro. He is a holistic doctor. They found him through Kayla who was diagnosed with DIPG at 5 yrs old and lived until ten years old, 3 of the years being "symptom free". This brings me back to the window of time. How come some patients benefit more than others? So if Faith had DIPG for a year before she started the Nimotuzumab and over a year before seeing Dr Petro, maybe if someone like Brooke who is less than 6 months into her battle might benefit now before the tumor gets out of control. So that is why I am passing this information on to you. Of course it is your personal decision if you choose to research the study and/or the doctor. (The doctor is not affiliated with the study).