Sunday, December 25, 2011

Asthma Annie


It has been a sad week in our home. William's little dog, Asthma Annie, was killed on Thursday, December 22, after running onto the highway. Many tears have been shed for her, as she was a much-loved friend and constant companion.
Just the day before, William's Pulmonologist had commented how well William's lungs were looking, perfectly healthy, not at all like the little boy he began seeing over 1 and 1/2 years ago. At that time he was sure that William would end up with a trache, as his lungs were so damaged and scarred from previous pneumonias that there was not really hope of such a successful turnaround! After all, 9 serious pneumonias before the 3rd birthday is nothing to be complacent about. I told him about Annie and he said not to discount it...he's been in practice too long and seen it too many times to not give it any merit. So, does a chihuahua REALLY take a child's asthma? I don't know. But I do know William has consistently gotten stronger and healthier in the last year and for that we give thanks to God!
William is beginning to understand that she won't be coming back. The first night was awful, as he had no realization of death. He called for her several times through the day, but was reminded of her death. At bedtime, the conversation went:
"I want Annie."
"Annie can't come. Remember, she got hit by the car and died?"
"Oh. When Annie's done being hurt, she come back to bed with me?"
And, of course, many tears with the knowledge that she can never come back.
The next night was better, with simply
"We buried Annie in the ground?"
"Yes."
"She can't come to me?"
"No, son."
More tears.
By last night, there were no tears. Just a simple, "I miss Annie."
Oh, my heart is hurting for my little boy, and the rest of my children! I realize there are much worse things that can happen. People are missing much, much more. We've even experienced greater loss in our own family. But watching my sweet children learn about death is a painful providence. It is also incredibly sweet. That might sound odd, but truly there is nothing sweeter than knowing the sorrow in a heart, while listening to tender prayers of thanksgiving for the gift of such a special dog. Hearing words of wisdom repeated from young lips makes this a very bittersweet occasion.
"The Lord gives and the Lord takes away..."
Thank You, LORD, for all of your precious gifts, no matter how insignificant they may seem to mere human eyes. And thank You for the life lessons that come in Your perfect time.
"...blessed be the name of the LORD!"

- Posted from my iPhone

Wednesday, December 14, 2011

MIA


Well, I realize I've been MIA for awhile! So sorry! We've been unbelievably busy! Isn't that a lousy excuse, as everyone is busy? Anyway, Sarah was able to complete her film about William and we are all very excited! It's at the SAICFF right now being judged. By the way, if you want a copy, be sure to let her know. She's trying to calculate how many before she sends it off for production, which will only be done once, as it is so expensive.
The movie covers William's life in detail, from birth to finding out about his deafness and doing the cochlears, to lung issues, to blindness, to random things about our family. We are very proud of her work.
So much has gone on in William's life recently. I've been posting tidbits on Facebook, but I will have Sarah or Abby give a more detailed account here as soon as we are done with the school year (hoping to wrap things up next week).

"Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him, and He will make straight your paths. Be not wise in your own eyes; fear the LORD, and turn away from evil." - Proverbs 3:5-7

Monday, November 28, 2011

Parental Rights

BREAKING: Farris defends major parental rights case (medical decisions) in Michigan

Dear HSLDA Members and Friends,

Who should make very difficult decisions for children? Parents or doctors?

In March of this year, 8-year-old Jacob Stieler was diagnosed with Ewing Sarcoma, a dangerous bone cancer. His parents took him to a highly-rated children’s oncology center in Grand Rapids, Michigan.

Jacob had surgery to remove the tumor, which was followed by several rounds of chemotherapy. The treatment was incredibly difficult, and Jacob’s mom, Erin, told me that when she looked her son in the eyes, she knew in her heart that he simply could not survive many more rounds of these drugs.

Erin and Ken, Jacob’s mom and dad, joined by hundreds of others, prayed for Jacob and his complete recovery.

After all of these rounds of chemotherapy were completed, there was a PET scan done to check on the status of the cancer. There was no evidence of cancer detected in Jacob’s body. Jacob’s family and friends rejoiced in his healing—praising God for this wonderful outcome.

But the doctors wanted to give Jacob several more rounds of chemotherapy and radiation, despite the clean PET scan. When asked why they wanted to keep giving Jacob these incredibly dangerous drugs, the doctors replied that this was “the standard of care” for his illness.

Jacob’s parents begged the doctors to make an individual diagnosis, rather than simply following unbending standards. But the doctors were steadfast. All children with this cancer needed multiple rounds of these drugs—regardless of PET scan results, the doctors contended.

Jacob’s parents did extensive study of the side effects of the five different chemotherapy drugs that the doctor wanted to administer. And they believed that the risk of the drugs was far greater than the risk of recurrent cancer, since Jacob had a clean PET scan. They said no to the doctors. No more chemotherapy treatment for now.

But the doctors would not take no for an answer. They called child protective services in Jacob’s county and asked the agency to file charges against the family for medical neglect.

After looking into the matter, both the local CPS agency and the local prosecuting attorney refused to file charges. They believed that the parents were making reasonable decisions for Jacob.

The doctors still would not take no for an answer. They called higher authorities in the state level CPS agency. The doctors had to make several calls before they finally found someone who would agree with them.

As a result of all of these calls, the local CPS agency was pressured into filing medical neglect charges against the parents.

The local prosecutor still refused to take a case against the family, so the state level CPS officials hired an independent private lawyer to serve as the prosecutor against Ken and Erin Stieler.

A jury trial is scheduled for early January to determine if the doctors will be given the authority to take over the medical decision-making for Jacob.

When I heard about this case - and checked out the facts - I knew that I could not sit on the sidelines and watch this family be overrun and parental rights be trashed by well-meaning but overzealous doctors.

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
  • Anorexia

It would take pages to recite all of the warnings and side effects.

Parental rights are increasingly being lost in the medical arena. I am beginning to wonder why physicians even bother asking for parental consent if they will just do an end run around the parents whenever it is convenient for them to do so.

This is not an easy case. It is not a case where a child has a current illness and the treatment is tested and proven to be safe and effective—those cases are easily resolved. The best evidence is that Jacob no longer has objective evidence of cancer. And not a single drug that the doctors want to give Jacob is FDA-approved for children for his kind of cancer.

This is a case where there must be a judgment call—a balancing of risks.

Who makes that call?

The doctor told me during the deposition that she thinks that she should make the call—for every child in this situation. And she would give the same answer every time, rather than making an individual judgment.

I can’t imagine a more clear case of the need for parental rights. This is a decision that requires the wisdom of God.

HSLDA was established to defend parental rights in the context of homeschooling. But the assault on parental rights comes to us on many fronts. This is why we have set up the Homeschool Freedom Fund to enable us to fight important cases for the broader principle of parental rights. Our regular membership fees do not stretch far enough to cover these kinds of cases. We truly need your help to be able to fight for the principles we all hold dear.

If you would like to stand with us in this critical battle for parental rights, I would ask you to send the very best gift you can to the Home School Foundation’s Homeschool Freedom Fund. All gifts to HSF are tax-deductible.

This trial is coming soon—we will send out email alerts if there is any change in the schedule.

Fighting a case of this magnitude is an expensive proposition. I hope you will be as generous as possible so that we may cover travel costs, local counsel, and deposition expenses—for this case and future cases where justice demands action to preserve freedom.

Our nation was founded upon the traditions of Western Civilization. This civilization was founded on the principles of the Word of God. God gives children to parents—not to the state, and not to doctors. In cases like this one, our legal system must remain steadfast in following the principle that God has delegated these kinds of decisions to parents, not to doctors, social workers, or courts.

Please pray for the Stieler family’s case and help as best you can. Thank you.

Sincerely,

Michael Farris

HSLDA Chairman

Monday, August 8, 2011

Introducing...

Knox Nehemiah


"Influential, righteous man who is unyielding and brings comfort from God"

The Lord has blessed us once again and we are truly grateful! Precious Knox was born August 3 at 5:37pm and is definitely living up to both the "unyielding" and the "comforted by God" parts of his name! After a difficult labor and near C-section, our little breech boy was delivered at 8lbs, 15oz, 20 1/2". He is precious and William is enjoying being a big brother once again! He loves to hold Knox and is continually amazed that Knox came out of Mommy's tummy!
We are very thankful for all of you who stood with us in prayer during these last weeks and especially during those last difficult moments!

Psalm 72:3 "The mountains shall bring peace to the people, and the little hills, by righteousness."

- Posted from my iPhone

Friday, May 20, 2011

Cute




William is ready for bed as Abby reads a "Billy and Blaze" story to him. I'm so thankful that he enjoys reading now. Blaze is his favorite. He can even tell some parts of the different stories and he knows what's coming next!
Notice the little dog tucked under his arm? That's Asthma Annie, a real chihuahua, who tolerates his affections very well!

"The hearing ear, and the seeing eye, the LORD hath made even both of them." Proverbs 20:12

- Posted from my iPhone

Friday, April 8, 2011

Happy Birthday, William!




Today my sweet William is 4 years old! We are praising the Lord for this precious little boy, for life, and for a full year of no hospital stays, no pneumonias, no significant lung issues, and the trache avoided! We know that God has protected us from so much and He's been far better to us than we could ever begin to deserve and we humbly praise Him for it all!

Psalm 30:4 "Sing unto the LORD, O ye saints of His, and give thanks at the remembrance of His holiness."

- Posted from my iPhone

Sunday, March 27, 2011

Good times

Been having lots of fun around our house lately, even with all the school and remodeling!







All boys love the Lone Ranger, right?

- Posted from my iPhone

Wednesday, February 16, 2011

Long Day

Yesterday was quite the long day. Amidst all the regular therapies, we saw William's eye doctor and found out what we really already knew. William's visual acuity is somewhere between 20/400 to 20/700 with best correction. Basically that just means he's legally blind. On the upside, his right eye seemed stable and maintained it's vision over the last 3 months. His left eye, however, was slightly worse. He is doing very well and compensates nicely. I am so thankful that we chose to have his implants when we did. I can't imagine him not being able to hear OR see. He really uses his sense of hearing and relies on it heavily. He uses either the sound of my voice or touch to find me. Again, very thankful for Cochlear Implants.


- Posted from my iPhone

Tuesday, February 1, 2011

Amusing

Okay, it's been awhile. William has been healthy for a significant amount of time, praise the Lord! School has been keeping us pretty busy. I have 6 in school this year, a first for me and I'm teaching 2 of them how to read. I've also discovered that Elly has Dyslexia, which has been a new challenge, but I think we're starting to get it. At least we've had an entire week of school with no tears - that's got to be good, right?
In keeping with the idea of school, I was recently emailed this list of "Why teachers lose their minds." I'm only posting the funniest ones...hope you enjoy them!



























- Posted from my iPhone

Thursday, January 20, 2011

Baby Naomi

To all prayer warriors:
Baby Naomi Nault is currently at OUMC, bleeding in her swollen belly. She's lost a lot of blood, doctors are stumped, and they've told the family to prepare for the worst. Please remember her in your prayers.

"But know that the Lord has set apart him that is godly for Himself: the Lord will hear when I call to Him."
Psalms 4:3


- Posted from my iPhone