It's been a crazy week. I've never been on Facebook so much in my life, and I have piles of laundry to show for it. 🙂 There is no way to say it strongly enough: all of you, my faithful readers, are amazing people, amazing friends. Anytime I ask for your help, you're right there. When I first told you about the case against Jacob Stieler's parents last week (Do we have the right to deny harmful medical treatments for our kids?), you jumped into action. Not just because you knew that this case truly affects us all (we ‘radicals' who don't blindly follow our doc's advice can be a ‘threat' you know, so it could be us next), but also because it's obvious to anyone who learns even a little about this case, that it is WRONG, plain and simple, and this family needs our help.
(If you're reading this later, click here and scroll down to start at the beginning for all the posts on Jacob Stieler's case, including current updates or click here for all my parental rights posts in one place.)
You blew everyone away!
You flooded the Helen DeVos Children's Hospital Facebook page (affiliated with the Spectrum Butterworth hospital in downtown Grand Rapids, Michigan) and the C.S. Motts Children's Hospital FB page (affiliated with the University of Michigan hospital in Ann Arbor, Michigan) with HUNDREDS of notes of love and support and pleas for these institutions to get the charges against the Steiler's dropped.
After a few days of this when we didn't hear anything, I contacted the HDVCH by phone, here's how that conversation went when I spoke with Anne Veltema, who is the PR coordinator there:
Me: “Hi, my name is Kelly and I'm curious if you've seen what's going on at the Facebook page for the Children's Hospital?”
Anne: “Yeah, I saw there was a comment there, what's up?”
Me: “Have you looked recently? Because there's quite a firestorm with many people upset about the case against Jacob Stieler's parents. I'm calling because I'm wondering what you guys are doing to get the case dropped against them?”
Anne: “Let me look into this, can I have your number in case I need to call you back?”
Me: “Actually, I'd like you to call me back either way, please, because I'm curious about what's being done. Thank you!”
I haven't heard back from her yet.
Get this, Mott just announced that beginning today, they are removing any posts about this case from their FB page. Things must be getting a little warm over there… THEN, 2 hours later DeVos Children's Hospital noted the same thing on their page. I guess you can only comment on those pages if you think they're wonderful, but not if you want them to know you're unhappy about something. ***Please be watching my Kitchen Kop Facebook wall and the Hope for Jacob wall to stay updated on the latest plan to help the Stielers. THANK YOU!
Here's a lame response from HDVCH's FB page a few hours after my phone call. (And the next day, an even more lame response from C.S. Mott.)
Notice the 60+ comments there, mostly supporting the Stieler's, but a few in support of the hospital for all they've done to help children — I've said on numerous occasions that we do not dispute this fact in the least! I'm convinced that both hospitals are filled with good-hearted people. The DeVos Children's Hospital here in GR has helped many of our own friend's kids! And as I write this, very close family friends are at the U of M hospital with their son who is healing from a surgery where a miracle from God took place at the hands of an amazingly competent and compassionate surgeon! (I still cry each time I think about it!)
What is being debated is who has the right to choose what care your child receives.
A Mom at the link above told me about her own son who is on chemo right now, and she hates that he has to have this poison injected into his body, but feels it is his best shot at a full recovery. Here was my response to her:
“It is obvious that you are a great mom and that you're doing exactly what you feel is right for your child, and *you* know this best. That's all we're saying, that Jacob's parents have the right to decide, not doctors. What if tomorrow you took your son for treatment and they told you they wanted to put him on some new drug. So you went home and researched it and found out that it wasn't proven to be safe, except maybe in a study done by the drug company who developed the drug, and you didn't feel comfortable with this, so when you went to tell them your decision, they called CPS on you. This is exactly what is happening with the Stielers. It's just wrong. I'm not saying chemo is always wrong, for some it saves their lives, but taking parents to court for making the best decisions they can for their child is WRONG.”
Jacob's Aunt Rachel share's her point of view…
I'm thankful that over the course of the week I've been in touch with Jacob's Mom, Erin, and his two Aunts, Rachel & Liz. Today I want you to hear the whole story, everything, from Rachel's point of view.
Here's the first email Rachel sent me, and I wanted to share it so you realize what your support has meant to all of them:
“Regarding the Stieler case, thank you so much for sharing their story. My sister Liz and I (along with Erin) started the Hope for Jacob Facebook page when the DHS decided to press charges. Unfortunately, we haven't had much response over the pass few months — people have failed to realize that this affects ALL parents. Letters have been written, the media has been notified. But, last night, when I read your post and saw the overwhelming amount of support for my sister and her family from your followers on the Helen DeVos FB page, I was ecstatic! I couldn't wait to call Erin the next morning and tell her all about it! Thank you so much for taking the time to expose the actions of this hospital. Erin is hesitant to name the parties involved, but I would be honored to expose these people.”
Here's the full story, and below, we ask for your help one more time…
This is a long story so I broke it into two posts over today and tomorrow. (Read part 2 here.) Even though it's long, it reads like a novel, full of shocking details that will having you crying one minute and then throwing things the next.
If you need to come back later to read all of it, please be sure to at least scroll down to the bottom for snail-mail addresses of who we would LOVE you to drop a quick note to. Let's COVER the desks of these people with pleas for help in getting this case DROPPED. Thank you all again, from the bottom of my heart!
Aunt Rachel's story:
My 9-year old nephew, Jacob Stieler, had been experiencing back-pain for a few months.
His parents, Erin and Ken, assumed it was related to hockey (a sport that Jacob had played for 5 years) and paid close attention to the problem over the following weeks. Erin eventually called their family doctor, but was unable to make an appointment. She instead brought Jacob to the walk-in clinic in Marquette where they took an x-ray and found that Jacob was severely constipated. The doctor told Erin to give Jacob some prune juice, suppositories, enemas, etc. to “work the pipes”. It didn’t seem to work, so again 2 days later, she brought Jacob back to the Walk-In Clinic. That doctor told her to use Miralax. Jacob was still experiencing both symptoms of constipation and back-pain. Erin attempted once again to make an appointment (on Tuesday, March 22nd) with their family doctor, but they were still booked full. So, Erin was told to bring Jacob to the E.R. at Marquette General, where they would administer an enema. Erin had contacted me a couple times throughout the weekend prior and I was aware of what had had been going on. Our oldest sister, Liz, and I were convinced it was nothing. Constipation is known to cause other problems, including back pain, so we really didn’t think much of it when Erin told us she would be taking Jacob to the E.R…
Erin called me early on Wednesday, March 23rd, with panic in her voice.
They admitted Jacob and he had stayed in the hospital overnight and within two hours of being in the emergency room, Jacob had lost feeling in his legs and had issues walking. She was calling me from her cell phone on the way home. She said she had 30 minutes to go home and pack a bag—they would be transporting Jacob from Marquette General to Helen DeVos Children’s hospital by plane. I was in complete shock and after we ended our conversation, I immediately called Liz, my brother, Neil, and my parents who were equally surprised. Again, we assumed the back-pain and even the trouble walking was caused by the constipation, relating to nerves being pushed…or whatever.
Liz and I live about 30 minutes from HDCH, so we felt blessed that of all hospitals, Jacob was sent to one close to us. We arrived to the hospital shortly after Erin and Jacob. Jacob was lying in the hospital bed, hooked up to tubes. It was heartbreaking.
Little did I know…did any of us know…this was just the beginning.
I remember Jacob (who has always had a very funny, witty sense of humor and seemed much older than his age since I can remember) lifting up his limp legs with his hands and letting them drop to show us he had no feeling in them. He would punch his legs and yell at them to move—he was sort of laughing, but I recognized the fear in his eyes. It was the same look that Erin had.
That night, they gave Jacob an MRI and detected a mass on his spine.
The next morning, we learned of the MRI results and that they would be immediately taking Jacob into surgery to remove the mass. Still, we prayed and hoped it was nothing. A mass could still be nothing. We, along with my parents, met Erin in the waiting room. Jacob had already been sent in and was being prepped. I was so thankful my parents were there–I knew the support of Erin’s sisters wouldn’t be enough. We all circled around Erin and prayed incessantly for what seemed like hours, with tears running down all of our cheeks. Eventually someone came out and said the surgery was complete, the doctor had said that he had never seen anything like it, but it could be 5-7 days before they had a diagnosis.
They were able to remove the bulk of it, but a small amount still remained.
Eventually we were able to visit Jacob up in his room. I could not believe how well he was doing. All I could think of was how my own son would have reacted to the MRI, surgery, etc….he certainly would NOT have been as calm as Jacob. Jacob was once again hooked up to tubes (including a drain tube for the incision) and as much as Liz and I both wanted to weep for our sweet nephew, we did our best to “hold it together” and have an upbeat attitude, despite the circumstances.
On March 26th, Jacob was diagnosed with Ewing Sarcoma.
Ewing Sarcoma is a malignant round-cell tumor. It is a rare disease in which cancer cells are found in the bone or in soft tissue.
Jacob’s incision was healing quickly and despite the circumstances, he continued to keep his good attitude.
Ken and Jacob’s younger brother, Caleb, came as soon as they could, the night after Erin and Jacob arrived at HDCH. Ken had a choice of keeping his job or being with the family at the hospital. As hard as it was, Erin and Ken made the decision that Ken losing his job would only make the situation worse, so Ken commuted the 7-hour trip as often as he could. I had to leave the room when Ken first arrived. He has a tough exterior, but he is a wonderful man with a gentle heart, and I didn’t think I could take watching Ken see Jacob for the first time since he had been in the hospital.
At the end of the weekend, Ken headed back to the U.P. and Caleb came back home with Liz and I. The following week Jacob was sent to Mary Free Bed so he could start physical therapy. His legs were weak as he had been confined to a wheel chair—we were all excited to see him walk again.
Jacob started with chemo treatments on April 11th (commuting to and from Mary Free Bed for physical therapy). By now, Jacob was out of a wheel chair and using a walker—a huge step!
Jacob and Erin met with Dr. Beth Anne Kurt, Jacob’s oncologist, on a regular basis.
Erin, along with Liz, my parents and I, were already aware of the risks of chemotherapy and radiation…or we thought we were, anyway. We had all been making healthy choices for our families (natural and organic foods/medicine) for at least two years, and considered ourselves somewhat educated on the topic.
But shortly after Jacob began chemo treatments, Erin began to do more research (even though Dr. Kurt advised her not to)…
Erin was given papers on the side-effects of the drugs. Not all of the side-effects were listed…at least not the serious ones. Erin informed us of the information she found on the five drugs they were giving Jacob. My sister and I began to do research, as well, and what we found was shocking.
As Michael Farris stated in a recent letter to HSLDA members:
I recently flew to Michigan and took the depositions of all three doctors who were scheduled to testify against the family.
Jacob’s treating physician is the key.
I prepared for the depositions by obtaining copies of the official “package inserts” that the FDA requires all drug companies to give to physicians and patients. Undoubtedly, you have seen these inserts when you have picked up prescriptions for your children.
The inserts tell you several things:
• Indicated uses—that is a list of the diseases for which there is evidence that the drug is a safe and effective treatment.
• Warnings—these are strong cautions that indicate serious potential issues.
• Side effects—these disclose all of the potential consequences that arise from taking the drug.
• Approved for children—there is a specific disclaimer on many drugs that indicate whether the drugs have been proven to be safe and effective for children.“Have all of these drugs been approved by the FDA as safe and effective for children?” I asked Jacob’s treating oncologist.
“Yes,” she replied, they have been FDA-approved for children.
According to the official package inserts that we were able to obtain, she is just flat wrong.
She wanted to continue to give Ifosfamide to Jacob. The FDA disclosure for this drug says: “Pediatric Use: Safety and effectiveness in pediatric patients have not been established.”
The oncologist wanted to give Jacob a weeks’ worth of Etoposide. The FDA disclosure says: “Pediatric Use: Safety and effectiveness in pediatric patients have not been established.”
The warning on the drug Doxorubicin says: “Pediatric patients are at increased risk for developing delayed cardiotoxicity.” This means that the drug can cause severe harm to a child’s heart—at even higher rates than it can in adults.
In fact, as it turned out, the treating doctor had never even seen, much less read, these official FDA-required package inserts.
She did state that she had seen similar information from other sources.
Most of the drugs did not list Jacob’s form of cancer as an “indicated use.” This means that these drugs had not been tested and validated as safe and effective for this particular kind of cancer—even for adults, much less for children. And then we get to the official warnings and side effects.
In addition to the strong warnings about “congestive heart failure” from Doxorubicin, other drugs the doctor wanted to give were known to have caused cancer—new forms of cancer—in patients being treated for an original cancer.
Vincristine’s label is typical of these warnings: “Patients who received chemotherapy with vinchristine sulfate in combination with anticancer drugs known to be carcinogenic have developed second malignancies.” The warning labels say that sometimes these second cancers develop years after the treatment.
All five of the drugs that the doctors want to give Jacob are either known to cause other cancers or have not been fully tested.
Some of the other side effects for these drugs include:
• Damage to the cranial motor nerves
• Serious infections
• Failure of boys to sexually mature
• The inability to father children
• AnorexiaIt would take pages to recite all of the warnings and side effects.Erin, Liz and I had many conversations about the possible effects the chemo could have on Jacob. Erin spent many nights talking to Ken on the phone, discussing options.
Doing chemo was going against everything they believed, but at such a scary time, they felt pressured by the doctors…
The next morning, we learned of the MRI results and that they would be immediately taking Jacob into surgery to remove the mass. Still, we prayed and hoped it was nothing. A mass could still be nothing. We, along with my parents, met Erin in the waiting room. Jacob had already been sent in and was being prepped. I was so thankful my parents were there–I knew the support of Erin’s sisters wouldn’t be enough. We all circled around Erin and prayed incessantly for what seemed like hours, with tears running down all of our cheeks. Eventually someone came out and said the surgery was complete, the doctor had said that he had never seen anything like it, but it could be 5-7 days before they had a diagnosis.
On March 26th, Jacob was diagnosed with 
End of part 1, however, the contacts you can get in touch with are listed below.
Read part 2 here, where you'll read about how Jacob's oncologist was clearly not happy with his “all clear” test results (how sad is that?!), and how CPS came to their house and originally planned on dropping the case when it was obvious there wasn't one…
Keep Tweeting and Facebooking!
***Don't forget to keep watching my Kitchen Kop Facebook wall and the Hope for Jacob wall to stay updated on the latest plan to help the Stielers. THANK YOU!
Scroll down for names and addresses.
***Please comment below to tell us who you contacted so the Stielers can see all the support out there for them!
Related posts and links that you'll want to check out:
- If you're reading this later, click here and scroll down to start at the beginning for all the posts on Jacob Stieler's case, including current updates.
- Click here for all my parental rights posts in one place.
- The grim truth about America's so-called war on cancer
- Erin Stieler’s radio interview with Dave Gahary (American Free Press)
- A movie you can watch on this same subject: Overruled, the Movie
- You can also find more information at ParentalRights.org – they are fighting for JUST these types of rights to not be taken away from parents!
- Another shocking story that Heather wrote about recently: War on cancer? Nope, it's a war on cancer patients. “Jim's son was diagnosed with a very rare form of brain cancer that had a 0% success rate with conventional treatment. Dr. Burzynski was having really good results with brain cancer so they tried to take him there. Unfortunately the FDA blocked him from receiving treatment and CPS threatened to take all their children away if they didn't submit to conventional treatment. In the end they did submit in the hopes that as a last ditch effort the FDA would let them see Dr. Burzynski when conventional treatment failed. It did fail and they did get to Dr. Burzynski. They saw a dramatic 30% reduction in tumors before the boy died of chemotherapy poisoning.” Is this for real?!!! In AMERICA?! The land of the free?!
Contact info – THANK YOU THANK YOU THANK YOU for reaching out in any way you can to put the pressure on!!!!!!!
- DHS Director, Maura D. Corrigan, P.O. Box 30037, Lansing, MI 48909, (517) 373-2035 – writing a snail mail letter is best, but better-than-nothing would be to let her office know what you think on this contact form. If anyone can track down her direct email, please let me know!
Board of Trustees, Helen DeVos Children’s Hospital:
- Donnalee Holton (Board Chair), 4438 Mystic Ridge Ct NE,Grand Rapids, MI 49525-9464
- Patricia Betz (Vice Chair), 1780 Old Woods Ct. NE, Ada, MI 49301-9695
- Vicki Weaver (President), c/o Helen DeVos Children’s Hospital, 100 Michigan NE, Grand Rapids, MI 49503
- Dick DeVos (Honorary), c/o Helen DeVos Children’s Hospital, 100 Michigan NE, Grand Rapids, MI 49503
- Dr. Lisa R. Markman, Associate Director of Child Protection, University of Michigan, Ann Arbor, MI
- Dr. Beth Anne Kurt, Helen DeVos Children's Hospital, Hematology/Oncology MC249, 100 Michigan NE Floor 10, Grand Rapids, MI 49503
Can you think of any more addresses or email addresses I should include? Send them to me and I'll add them!
Beth says
I encourage anyone reading this story to get involved in the Canary Party (www.canaryparty.org), whose mission is this:
The Canary Party is a movement created to stand up for the victims of medical injury, environmental toxins and industrial foods by restoring balance to our free and civil society and empowering consumers to make health and nutrition decisions that promote wellness.
They fully support and fight for parental rights. To my understanding, it’s not a political party per se with candidates, etc., but their aim is to influence policy change.
Commenter via Facebook says
Our son’s story is so similar.
https://purpledancingdahlias.blogspot.com/p/our-childhood-cancer-journey.html
This is our page for our sons cancer. They didn’t even tell us the results of his test until he had already started his fourth round of chemotherapy which caused high frequency hearing loss in both ears. The tumor was gone and AFP levels were in totally normal range, but they “have” to follow the “standard of care” protocol and knew I would fight them on it so decided not to tell us until round four was underway.
Rachel B. (Jacob's Aunt) says
Denise,
Despite the urge I have to immediately lash out and respond to your hateful and negative comments, instead, I will begin with telling you how sorry I am that your son has ES. I know how difficult it must be for you because I watched my sister go through the same heartbreak while her son was going through treatments. It’s something no parent should EVER have to experience.
That said, I am a Christian woman and I try to live my life accordingly, treating people with the love, kindness and respect they deserve. However, I am only human and I am far from perfect. So, being “only human” and Jacob’s aunt, you can imagine my reaction when I read your ignorant post. Yes, ignorant–because you know absolutely nothing about Jacob’s case and you obviously don’t know anything about the “standard of care”, effects of chemo and radiation, etc., etc. Now, normally, when I’m feeling gracious and understanding, I tread lightly on the topic of natural medicine vs. chemo. I, too, was ignorant on this topic for many years, so to present my opinions/beliefs in an angry, arrogant tone–well, that would make me a hypocrite. Yet, you’ve come on here without any hesitation, stating that Jacob WILL die without chemo and radiation. Most of Kelly’s followers are like-minded. What prompted you to randomly troll through this website and post such absolute nonsense? I’m sure you know by now that the chances of you finding anyone on here that agrees with you is slim at best. Aside from the fact that you don’t know Jacob or his parents or ANYTHING about his case (or that he’s healthier than ever), it’s clear that you’ve been buying the load of crap that your oncologists have been selling…you know what? I’m not even going to get into it…
I am sorry for you and your son. I am sorry that you’re scared and feeling insecure about the decisions you’ve made regarding your son’s health. You’re certainly not the first to attack my family and probably not the last. Considering all you’ve said, it would be “easy” for me to turn this around on you and tell you, well…you know. But I won’t. Because I genuinely hope and pray that your son will be healed, despite everything that’s working against him. I also pray that you will eventually see the truth in all of this. For your son’s sake and your own.
Commenter via Facebook says
I agree, you handled it perfectly. I can completely empathize with the commenter- she is coming from a place few of us can imagine, and she is responding emotionally. My brother died from a (different) cancer 10 years ago and it is still really hard for me to not respond emotionally to these kinds of situations. Part of me agrees with this commenter (a small part), but part of my applauds the Stielers because my brother DID all the radiation and chemo and it didn’t work, and it poisoned the last year of his life. But what I think about what they should do is irrelevant because I agree- it is up to the parent. My husband and I were just talking about this, although in an unrelated way. We were talking about the different ways parents react to unfavorable prenatal tests, and to what extend SHOULD they be able to act on them. While I would pretty much never terminate a pregnancy based on any test, what I would do should have no bearing on what other people do, and so many people have a hard time separating the two…
Commenter via Facebook says
If that had ever happened to my child, guess I’d be heading for the border to a kinder, gentler nation…
Commenter via Facebook says
Kelly, I think you responded very well and I continue to be impressed with the way in which you handle differing opinions and the process by which you discern the truth. It’s one of the reasons I continue to read your blog, but have discontinued reading others.
Regarding the Stieler case… it’s sad to me that there’s little room for divine intervention in the court of public opinion. I believe God is very much on the case in this situation and that the Stieler family is seeking His will for their precious son.
Commenter via Facebook says
The whole entire “cancer machine” is money driven garbage. I’m a Nurse and 5 year survivor without their toxic soup and burning. I had to go to Mexico too, since all that was offered to me was toxic: chemo, radiation, mastectomy, tamoxifen-toxin. I decided to do this after finding the same stuff at Mayo, CTCA (although they are a little better), a phone consult with Seattle Cancer Center, and my home town. The final straw was my Dr screaming at me over the phone that I had to have a mastectomy! They are just wrong and practice dinosaur medicine. I’d take my child as far away from Western Medicine as I could in a heartbeat. Jacob’s parents should be applauded. I want to meet them.
Commenter via Facebook says
Does anyone know how he is doing as of this moment ?
Jennifer says
Wow. I am surprised someone would comment in such a negative manner without any intent of supporting the issue here. Denise, no one is saying that chemo is “candy”. The parents concerned in this case believe exactly the opposite. It is chemotherapy that often does a lot of damage to the body, as well as cancer. Sadly, chemo kills bad AND good cells.
The parents mentioned above care very much for their son and have seen him suffer, and because of this, are not convinced that the current treatment is doing any good.
There should be no place for judgement and condemnation on this post, and while you say you think we all have the right to choose treatment for our children, you condemn the choice these people have made. The above commentors are right. You are in a unique position, having had experience with the disease, but not all cases are alike. You are not going to change their minds. Next time you want to prove your case, it might be better swallowed if you present it lovingly.
To Kitchen Kop: I’m the first “Jennifer” that commented on this post, and I just want to tell you that I hope things are better by now. It has been about six months since you posted this! Any progress on his illness and the case? I hope so…
KitchenKop says
Here’s the latest news I have on this, Jacob is doing great!
https://kellythekitchenkop.com/2012/03/update-on-the-stieler-court-case-theyve-called-out-the-dogs-again.html
Commenter via Facebook says
I wonder if they have tried Dr. Burzynski? https://www.burzynskiclinic.com/
Commenter via Facebook says
these poor people. why won’t the state leave them alone?
Commenter via Facebook says
I also thought she was rude, but I thought you & Kate handled yourselves very well – diplomatic is the word that came to mind.
Commenter via Facebook says
I thought saying “He WILL die” and “Bull” was kind of rude….
Commenter via Facebook says
I thought your response to her was said very well. Good job!
Commenter via Facebook says
I actually didn’t think she was rude, just passionate.
Commenter via Facebook says
No, just no. I get that she’s upset because of her own child’s experience. But she CANNOT KNOW what Jacob’s experience is or will be. Absolutely not. And she has no right to speak so rudely to you or to his parents. As I said on the post, treatment protocols are developed for the AVERAGE case but every person is an individual who needs an individual approach. I’m pretty tired of this defense of cookie-cutter medicine, even in extreme cases like this.
Pat Robinson says
Denise, sending strength and healing energy to your family during this difficult diagnosis.
Pat
Denise says
You obviously have done no research on the deadly bone and soft tissue cancer, Ewing’s Sarcoma. If Jacob Stieler does not finish the protocol of treatment, he will die. Plain and simple. How do I know this? Because my son had Ewing’s Sarcoma.
Chemotherapy is not “candy”. Chemotherapy is a life saving treatment. Yes, there are possible side effects that are very serious with chemo and with radiation. But wouldn’t you rather have your child ALIVE?
My son went through the Ewing’s protocol and is having NO SIDE EFFECTS from the treatment so far and he is 11 months NED (no evidence of disease, in remission in other words).
I am praying and hoping the the Stieler parents will change their minds and let their son have the treatments. Otherwise, he faces a painful death and that is the truth, whether they want to believe it or not.
KitchenKop says
Have you seen Jacob’s files and looked over his specific case? His parents have done this and researched ES *extensively* as well, and are basing their decision on all of that, not on a “protocol”. There are no guarantees in life, but they are taking every bit of information they have in front of them and making the best decision they can, and Jacob is doing great and also “NED”.
Either way, this should remain their choice, because only they can choose what’s best for their son, no one else.
I’m so thankful your son is doing well.
Kelly
Denise says
Bull. They have not researched it if they do not follow the protocol. There is a protocol for a REASON…all kids who had Ewings back in the 1960’s just died because they had no treatment that was successful. Through clinical trials, this particular protocol has been developed. Some kids have chemo and surgery. Some have chemo, surgery and radiation and some just have chemo and radiation. It depends on where the tumor is, size, proximity to vital organs and the spine.
All Ewing’s cases are treated as if they have metastisized (cancer in bone marrow or lungs) whether the scans show that they have or not. This protocol ensures that if there IS cancer that is metastisized but is undetectable by scans, that the cancer will be wiped out.
The reason Jacob’s PET scans are clear is because his treatment was working. However, in order to be certain that the cancer is wiped out, he needs to do the entire course of treatment. EVEN if a patient DOES do the entire course of treatment, there is a 1 in 3 chance that the Ewings will return. That is how agressive Ewing’s Sarcoma is. It is a very deadly cancer. All this time they have stopped treating Jacob is like they are sitting on a ticking time bomb.
I believe in parental rights. But you have to sign paperwork in order to begin a process like this. It IS difficult to see your child go through chemo, radiation, blood and platelet transfusions and it is difficult for the child to go through as well. But I am telling you, unless Jacob was misdiagnosed in the first place, eventually the Ewing’s will return.
I wish there was a magical way to get rid of cancer without the pain and suffering. Actually, my child didn’t really have much effect from the chemo except tiredness, fevers and loss of hair and sense of taste for a few days after the treatments. Some children tolerate chemo and radiation very easily. But I am also saying, if you haven’t been through Ewing’s Sarcoma with your child, then you don’t know what you are talking about.
It makes me angry that these parents are taking away Jacob’s chance at life. It IS their PARENTAL RIGHT to refuse treatment. But I think they are making the wrong decision and that is my opinion as a cancer caregiver and mother to a survivor of Ewing’s Sarcoma.
KitchenKop says
You are in a unique position to have a very valid and credible voice in this discussion, but you do *not* know the specifics of Jacob’s case.
The protocol was based on clinical trials – WHO funded those?
Believe me, if we were in their shoes, I have *no* idea what we would do, but what they decided is totally their decision. Really the whole point of this discussion, and issue with the case against them, is who gets to choose what is right for their child. I’m thankful you and I both agree that it is the parent’s right to make these decisions.
Kelly
Kate @ Modern Alternative Mama says
Protocol was developed to treat the AVERAGE case of Ewing’s Sarcoma. Not everyone has the same experience. Statistics tell us nothing about the individual case — even doctors will tell you that. You cannot possibly know for a CERTAINTY that he will die! To say so is, quite frankly, rude and way outside your scope of knowledge. You do not know his case. He may go on to live the rest of his life with no issues. His cancer may return and be battled into remission once again. Or he may (unfortunately) die from it. We don’t know right now. Of course, there’s also the possibility that if he continued chemo now, he would be severely damaged or killed by that….
Bottom line? You choose how to handle your child’s case, and they choose how to handle theirs. They love their child and would never make a decision that they felt would cause him harm.
Jennifer says
This is so damn scary and I remember being terrifed of this type thing in the birthing room with my daughter and forgoing simple things like Vit K shot, etc. What is so sad, is that Michigan seems to have a track record for this and I’m hoping and praying the parents win and win quickly. if i remember correctly, this is the same state that has had a mother arrested for refusing to give her teen daughter psychotropics which are black labled adverse affects for teens AND caused her those symptoms; it is also the state that allowed prosecution of a woman for a garden in front yard so she could have organic food, and there is one more I thought. I think I would file against doctor to the Medical License Board, and report any where possible that the doctor failed to notifiy the patients of alternatives and of the risks involved as well as file a complaint for using the medication for off label treatment. it might not do much, but I would hope it could start a paper trail and get some other visibilty. The FDA IS bought & sold their soul, but from what I understand, they also can create penalties when someone uses offlabel, so why not use that against the doctor? I could be wrong, but maybe it could be worth a try??? I’m just trying to think of another way around. In the meantime, beware, this is not going to get better; the all hailed Obama care has written into the bill the opportunity for the goverment to supervise our parenting even more with “home visits” for “education and help.” How long will it take before one of the agents visiting a parent finds out the kid had a ear infection, the parent didnt fill the RX and they report them. How quickly will those home visits be used to bully parents into vaccinating their children? They will take away co-sleeping, etc. This is only the beginning, and if we can’t figure a way to stop this NOW, it will get worse with that new bill. This is a very scary because if they win (the hospital) it will set precedent for the state to charge parents who chose to not use antibotics like candy when the doctor hands them out, challanges the parents, and I fear even choices of vaccinations worse than ever. Michigan is already doing this and this isn’t the first case! I’m praying for the child to remain cancer free and for the family to be able to not only win, but somehow shut down this obscene excuse for medical care. Thank you for the info.
Camille says
This is so very, very sad. When in the world did we lose our rights as parents to make decisions for our children? When did the collective “we the people” decide that the state knows what is best for OUR children?! I understand the need to protect children from harmful parents, but that should be a very bright line test and not one so fine and fuzzy. The irony is that family court’s will bend over backwards to keep a biological family intact — giving parents chance after chance to keep their children, sometimes for years! But here you have loving, caring parents and some bozo in CPS decides THIS needs to be addressed?! Hopefully these parents will win and bury the hospitals, doctor and the state so that in the future their case will be a help to other parents facing similar situations. That is the silver lining here, I hope!
Bobbi says
We had a similar situation in the next town over, sleepy eye mn. The parents fought for natural remedies for their child who had cancer. They lost. The boy was forced to under go Chemo treatments. His last name was hauser. Perhaps the case would have some useful info…
Pat Robinson says
There is no “Standard of Care” documented at the American Society of Clinical Oncology (ASCO) for Ewing’s Tumor or pediatric chemotherapy agents. https://www.asco.org/ASCOv2/Practice+%26+Guidelines/Quality+Care/Quality+Measurement+%26+Improvement/ASCO-ONS+Standards+for+Safe+Chemotherapy+Administration+%5B2011%5D
ASCO’s Informed Consent for Chemotherapy recommendations undoubtedly were not followed: https://www.asco.org/ASCOv2/Practice+%26+Guidelines/Quality+Care/Quality+Measurement+%26+Improvement/Informed+Consent+for+Chemotherapy+Administration
Pat
Pat Robinson says
Per American Society of Clinical Oncology: “The standards are not medical advice or legal advice. To the extent that the standards conflict with applicable federal, state, or local legal requirements, practitioners should comply with those requirements. The administering agent is solely responsible for, and assumes all risks of, administering chemotherapy drugs notwithstanding any adherence to the standards herein. ASCO and ONS disclaim any and all liability with respect to the standards and the execution of the standards by any party.”
Does the hospital “assumes all risks of, administering chemotherapy drugs”?
https://www.asco.org/ASCOv2/Practice+%26+Guidelines/Quality+Care/Quality+Measurement+%26+Improvement/ASCO-ONS+Standards+for+Safe+Chemotherapy+Administration
Rachel says
I am so thankful for the response and support we’ve recently received. It’s comforting to know that we’re not alone with our belief that all decisions (medical and otherwise) should be made by the parents instead of “professionals” who are only going by textbooks. We feel blessed to have such wonderful people by our sides while we fight for Erin and Ken’s right to refuse more treatment for their cancer-free son.
To answer a couple of your questions:
Erin and Ken are aware of the protection that different religious groups have due to their beliefs. Although they have made it clear that they believe it was God who healed Jacob, not the chemo (I agree!), they have not used their religion to support their decision to forego further treatment. They believe this MUST be about parental rights and it’s their hope that this sets a legal precedent for all parents around the country who may someday face the same type of situation. 🙂
Regarding the comment about seeking a second opinion from a doctor who may be more open to alternative treatments, well…it’s too late for that now. But, as you’ll read in “Part 2” of this story, the Stielers did seek a second opinion. And wow, did it backfire! Doctors tend to stick together and it’s highly unlikely, especially at this point, that they could find a doctor that would be open to the idea of alternative medicine. At least not here in Michigan.
Again, thank you for your prayers and support…and donations! You have no idea how much this means to the Stielers! God bless!
Susan says
Has the family sought another opinion from an oncologist who may not press for continuing chemo? Or will all pediatric oncologists say the same thing? This story is so troublesome. As the mom of a chronically ill child (systemic inflammatory illness), I put my trust in her doctors, but as new illnesses popped up, I discovered SCD and put my daughter on it along with low dose naltrexone (also a good possibility for cancer patients by the way). Her doctors told us these things wouldn’t work, but they appear to be and I am getting her off the potentially life threatening medications her doctors claim are the only answer. One thing I have learned over the last five years of my daughter’s medical journey is that a mother’s instincts should not be ignored. I knew more was going on with my daughter while doctors dismissed my concerns only to find out I was right. I let my trust in doctors override the nagging gut feelings that were consuming me until I couldn’t ignore them anymore. Doctors do not have all the answers and it scares me that they can have this sort of control over our children. I hope the hospital comes to its senses and the case is dropped soon. I will write letters.
Jen says
Keep it up Kelly! Thanks for being this family’s voice!
Pat Robinson says
I donated $50 to Jacob Stieler to help with legal expenses. Could you donate $5 to help? (I have never asked for money on Facebook before!)
https://www.facebook.com/hopeforjacob/posts/178130462283906
thanks,
Pat Robinson
KitchenKop says
Yes! I’m donating $50 too, this battle is all of our’s to fight, thank you!!!!
syreeta jayne says
It’s hard to believe that this can happen in America, but we must face the fact that we are no longer the “land of the free and home of the brave”, we are well on our way to becoming a fascist government, full of anarchy. In the deliberations of the Constitutional Convention of 1787, which were held in strict secrecy,anxious citizens gathered outside Independence Hall when the proceedings ended in order to learn what had been produced behind closed doors. The answer was provided immediately. A Mrs. Powel of Philadelphia asked Benjamin Franklin, “Well, Doctor, what have we got, a republic or a monarchy?” With no hesitation whatsoever, Franklin responded, “A republic, if you can keep it.” It’s obvious that we have failed to keep it. The question is, what can we do to reclaim that freedom?
My thoughts, prayers, support and action are with this family. Thank you for letting us know about this sad, sad situation.
Melissa @ Dyno-mom says
All too often in this country we have to battle the “intellectual elite” and what they believe the proper way to handle things are. Once upon a time in this country electric shock therapy, institutional housing of the mentally handicapped, and lobotomies were all recognized therapies with significant public confidence. Medicine has fads, who is to say this isn’t one and that this child would not be better served by other therapies? The doctors cannot possibly love him as much as his parents, they cannot possible be as committed to his care and recovery as his parents, and they should not have the authority to decide on care.
Jennifer says
I have information that might be helpful to their attorneys, if they have representation. I am one of Jehovah’s Witnesses, and, due to our strong religious beliefs, we choose to opt out of certain medical procedures, in particular, whole blood transfusions. Because of this, there have been many court cases fought and WON regarding a person’s right to choose treatment for himself or his children.
At the very least, this would be good for research to prove the case of these poor parents.
KitchenKop says
Thanks Jennifer, I’ll forward your info to Erin. 🙂
Kelly
Joni says
I have followed this story for quite some time. Our family are friends with Erin’s parents and sister Rachel.
I just checked the Helen DeVos FB page. Rachel’s comment is there, as well as some others in support of the Steilers. It remains to be seen how long those posts will stay.
I live in Ohio, so these are not my state senators, governors, etc. But I am praying and posting whenever and wherever I can, as this could affect any of us at any time.
Praying, praying, praying!
Sara says
My thoughts are with you as I have contacted your senator and governor. I am so sorry your family is experiencing this tragic response! It is outrageous and shouldn’t be happening in America. God will be faithful to complete the work He started-I just know it!!
Hugs an blessings from Iowa
Sara M.