New Hope for Steph - and Bernie
This is Steph in 1998 at the age of 11.
And this is the most recent photo taken of the family and Steph at age 30.
The first photo was taken in 1998 when Stephanie was on vacation in Croatia with her little sister, Michelle; Dutch mother, Bernie; and American father, Jim.
It was the last summer she could stand. A few months later, she woke up with a fever, and when it had passed, she found to her horror that she had lost normal use of her legs.
Steph spent the next 18 years in a wheelchair visiting medical specialists in her home country of the Netherlands. Her quest to find answers and secure relief for a growing list of symptoms, including a progressive and severe scoliosis as well as multiple orthopedic deformities, ultimately proved fruitless. As her ability to lead a conventional life declined and her pain grew worse, her doctors could simply not understand what was happening to her.
In one final attempt to get to the bottom of her illness, Steph and her family decided to visit the world-renowned Mayo Clinic in Rochester, Minnesota. They went there simply for another opinion; what they found was a revived sense of hope.
Since November 2014, a multidisciplinary team of specialists at Mayo Clinic has been collecting vast amounts of data on her condition, the likes of which they have never seen before. What they have managed to conclude is that her condition--which presents itself mainly in muscle weakness, spasticity, and dystonia in her legs and spine--is likely caused by a serious metabolic problem. The illness appears to be progressive; the resulting debilitating pain has made it difficult for Steph to even just sit in her wheelchair. For Steph, who dreams of building a career in education or the medical field, this state of affairs effectively means that her life has come to a standstill.
The data her Mayo team has gathered is beginning to present some answers and possibilities, but many questions and uncertainties still remain. Her doctors are determined to plow through these and concurrently treat her symptoms. In return, they ask from Steph an equal level of commitment. In the words of her main neurologist, “As long as you keep going, so will we … Never give up hope.”
Initially, the high cost of tests and treatment threatened to cut short Steph’s Mayo journey, but, inspired by her team and newfound sense of hope and confident that a financial solution would present itself, Steph pressed on. Intrigued by her case, Mayo ultimately decided to forgive a significant portion of Steph’s medical costs, which have already extended into the millions of dollars.
However, the costs associated with uninsured medical expenses, frequent flights, legal fees, and daily living expenses in Minnesota, amounting to a total of around $6,000 per month, are jeopardizing the whole enterprise. Simply put, without assistance, the family will be unable to access the world-class level of care that Steph is currently being offered and be forced to abandon their journey. If that happens, Steph faces the prospect of a life confined to bed.
In order to help Steph and the Yarnells meet these financial obligations, a group of friends and colleagues from the American School of The Hague (ASH) have come together to raise funds for the Yarnell family, which has spent the better part of 40 years at ASH as both teachers and students.
Our goal is to cover the family’s Mayo-related costs for the next two years, the expected length of Steph’s surgeries and intense rehabilitation. At $6000/month, the family’s costs would amount to around $150,000 for the two-year period.
We desperately need your help today.
Steph's first major operation took place in late February 2016. Her left leg--already significantly deformed by the disease--was amputated above the knee. This paved the way for the next stage in July 2016: a ten-hour spine surgery, in which her doctors realigned her vertebrae and anchored her spine to metal rods (see above). In a ground-breaking new procedure, Steph’s doctors used bone from her amputated leg--which was preserved in the Mayo Clinic Bone Bank--to straighten and strengthen the existing bone in her spine.
The recovery from this invasive procedure is proving to be long and marked with numerous complications. Even now, 16 months since surgery, Steph is still weak and in need of constant care as she rehabilitates and prepares for more surgeries and treatment. With dad and sister employed in Europe, Steph is so grateful to receive this care - both physical and emotional in form - from her mom Bernie, who has given up her job at the American School of The Hague to be with her daughter.
But now this care threatens to be jeoparized, too. Recently (October 2017), mom and sole care-giver Bernie was diagnosed with breast cancer and must undergo a double mastectomy. Since Bernie is a Dutch citizen, she is not eligible for health insurance in U.S. Returning to The Netherlands and leaving her daughter behind is simply not an option. Yet the costs of cancer treatment in the U.S. are significant, and these add to the costs that the family is already facing for Steph's treatment.
So without your help, the hopeful journey of Steph's treatment is threatened to come to a premature end. Still, Steph and her family are holding on to their fighting spirit and faith in a positive outcome, inspiring all with whom they come into contact: from Steph's medical team at Mayo to other patients, colleagues, friends, and family. We hope that this family's story will move you, as well. Every contribution, large or small, makes it possible for the whole Yarnell family to continue hoping for a better quality of life and for Steph's doctors to keep working on unraveling the mysteries of her illness.
Steph with mom and primary care-giver Bernie, who was recently diagnosed with breast cancer.
If you are interested in learning more about Steph and the family and seeing recent pictures, click on the "updates" link below, or visit the website set up by her friends of the Yarnell Family Trust.
The Yarnell Family Trust
Chris, Dawn, Tim, Sabine, Nic, and Myriam
Another message from Rochester; this time from me (Bernie) instead of from Steph.
It has been six weeks since my double mastectomy surgery, so I wanted to give you a brief update. I am very pleased to report that I am doing - and feeling - well. Two weeks after surgery, they started filling my so-called skin expanders. This has now been completed, so I can wear a blouse again without anybody seeing that I had a mastectomy! The final reconstruction surgery - during which these expanders will be replaced with permanent implants - will most likely happen in May. But this should be an outpatient procedure.
Since the surgery, I've also been receiving physical therapy, and I've been placed on hormone therapy. Unfortunately, the latter is giving me some side effects, including headaches and fatigue, but I'm hopeful these will subside over time. If not, there are other forms of hormone therapy I can try.
So all together, I'm incredibly grateful for the results and outcome, and indescribably grateful to all of you for your support.
Now that the invasive part of my treatment is behind me, I feel I can dedicate my time and energy to Steph again. Unfortunately, she is still struggling with the complications we shared in earlier updates. Her weight is still at 36 kg (79 pounds), and she's feeling weak and fatigued. Based on some additional tests performed over the Holidays, Mayo has just started her on a new line of therapy. Hopefully, she will respond to this within the next three months. If not, or if her weight drops even further, she will put on steroids and TPN (IV) nutrition. But this has a significant risk of infection and other complications, so we're hoping we will not have to resort to that. As soon as she's feeling stronger, she will send you an update.
So 2017 was a challenging year for us, but we've started 2018 with the hope of a new and healthy beginning. We wish you the same.
With love and gratitude,
Bernie & The Yarnell Family
We want to let you know that my mom had a double mastectomy last week Tuesday. Today, we received the results of the pathology, which showed that all the cancer was removed with clean margins, and that her lymph nodes were clean. This means she will not require any radiation or chemotherapy. She will only have to take hormone therapy drugs. Very good news!
So needless to say, she does not regret having proceeded with this surgery, especially since her recovery so far is going smoothly. She was discharged from the hospital on Thursday and still has two drains, but she is not in any pain and is feeling well - SO well, that we have to stop her from doing things she's not supposed to do!
Her doctors did advise her to start the breast reconstruction process right away, so they placed so-called expanders that will be filled every 3-4 weeks. These will be replaced with permanent implants in several months.
The pathology also confirmed that the cancer was present in both breasts. This included an 8 mm invasive cancer in her right breast that, due to my mom's extremely dense breast tissue, was not visible on any mammogram or ultrasound. So upon request of her Mayo doctors, my mom has agreed to become an advocate for women with dense breasts. At present, only 21 states in the U.S. require physicians to inform women who have dense breast tissue that their mammograms may be unreliable. In Europe, no such laws exist at all. In an attempt to change this, Mayo doctors are presenting cases like my mom's at conferences all over the world. As soon as our health allows, my mom is looking forward to actively collaborating with them and getting involved in that cause. But in the meantime, to all women reading this: at your next mammogram, please ask about the density of your breast tissue, and if you indeed have dense breasts, please insist on additional screening, such as an MRI. This additional screening saved my mom's life.
And so we are especially looking forward to some family time this Holiday Season. My dad has already arrived in Rochester. My sister is scheduled to arrive on Friday. Given my ongoing complications, I am scheduled to undergo a series of GI biopsies next week. But first, I intend to celebrate - truly celebrate - Christmas. In our little apartment here, we even have a Christmas tree and a wreath, given to us by friends.
So despite all the pain and suffering, we really have come to believe there is more goodness than evil in this world. Our journey is made possible by your support. And so you are - in the true meaning of the word - life savers.
In that spirit, we wish you all very Happy Holidays.
With so much love,
Steph, Bernie, Jim and Michelle
Words can simply not describe how grateful we are for your overwhelming support. Thanks to your contributions - and a payment plan offered by the Mayo Clinic - my mom can undergo her surgery here in Rochester. The procedure (a double mastectomy) will most likely be scheduled for next week. All we can do now is hope that the intra-operative biopsies of her lymph nodes will show that these are clean. I will keep you posted.
My mom knows she will be forced to take it easy for a while, but being the amazing mom that she is, she's determined to continue supporting me in my appointments and treatment. Unfortunately, I recently learned that my weight has dropped even further and is now down to 36 kg (79 pounds). I am on a special diet and eat well throughout the day, but my body just does not seem to absorb any nutrition. And so I am scheduled to undergo even more tests, including some biopsies of my GI tract. The fact that we just can't seem to turn a corner from these complications is very frustrating and upsetting. But I continue to remain hopeful that the situation will eventually turn around. Too many good things have already happened for it not to.
As a family, we are looking forward to spending the Holidays together. Both my dad and sister Michelle will be here for Christmas and New Year's. All four of us are in dire need of some family time. And all four of us are humbled by your boundless generosity and kindness. Truly and profoundly humbled.
With so much love,
Steph & family
I have some difficult news. My mom's breast cancer appears to be more invasive than initially thought, and she will have to undergo a double mastectomy (dubbele borstamputatie).
Her initial mammogram showed only a 4 mm mass in her left breast. But since my mom has very dense breast tissue, Mayo advised her to get some additional screening prior to the surgery. These tests - including a breast MRI - showed that my mom actually has a total of four masses, two in each breast, ranging from 6 to 11 mm. One of these is very close to her breastbone, and so they have advised her to move forward with a double mastectomy, as soon as possible. Hopefully, this will remove all the cancerous tissues before spreading to the lymph nodes.
So time is of the essence now. The surgery could be performed within 2 weeks, providing the finances are arranged. But as you can probably understand, a double mastectomy is even more costly than a lumpectomy. We are so incredibly grateful for the generous financial support you have already given us and are reluctant to ask you for more. So may we please plead to you to spread the word of our challenges within your communities - with your friends, faith communities, schools, social media contacts, etc.? We are completely desperate and simply cannot do this without help.
This said, beyond the despair and shock of this latest news lies significant gratitude. Gratitude for your support, on so many levels. And gratitude for Mayo Clinic for diagnosing - hopefully on time - the severity of my mom's cancer, which was missed in a mammogram she had done during a short visit to The Netherlands this summer (when my dad was with me).
And so my mom has asked if I can close this update with a message from her. "To all women reading: If your mammogram shows that you have dense breast tissue, please insist on additional screening. See this link ( http://www.mayo.edu/research/forefront/molecular-breast-imaging-boosts-cancer-detection) for more information. The MBI (molecular breast imaging) test described in this link is only done at Mayo, but all hospitals have the ability to perform breast MRI's. The masses caught on my MRI were completely invisible on my mammogram and ultrasound. I was completely unaware of this unreliability but grateful to have learned the lesson. I understand the difficult time that now lies ahead of me, but I am bound and determined to overcome this health struggle, so I can continue to help Steph overcome hers here in Rochester. We, as a family, have come too far to give up now."
With that, I wish you all a Happy Thanksgiving. Yes, our family wishes our current circumstances were different, but we do have a lot to be grateful for on this special Holiday. You are at the top of that list.
With all my love,
Steph (& my mom Bernie, dad Jim, and sister Michelle)
We have a very large group of "ASHpats" here in Houston. With the permission of the Yarnell family and Team Stephanie, I would like to host a fund raising party here in Houston. Please let me know soon. And let me know if there is any additional info that I may pass on to the attendees.
Thank you Team Stephanie, all of you, for sharing, and eloquently expressing the story of Stephanie's courage and the long journey she and all of the Yarnells have undertaken. Stephanie and her family have lived lives of creativity, productively and generaoisty,- transcending the hardships of this medical mystery. They have been models of strength and humanity. It's a honor to be a part of this campaign.
We wish you a very happy and restful family time together for Christmas. All the best for you Stephanie and your mother.