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!
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…
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!
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!