New Hope for Steph - and Bernie
This is Steph in Croatia in 1998, at the age of 11.
And this is Steph (with her family) at the Mayo Clinic in 2016, at the age of 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 has presented 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.
Steph with the Yarnell Family Trust Committee, in 2015.
Our goal is to cover the family’s Mayo-related costs for the next three to four years, the expected length of Steph’s surgeries and intense rehabilitation. At $5000/month, the family’s costs would amount to around $160,000.
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, 2 1/2 years after the spine 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 in October 2017, that care was threatened to be jeopardised, too, as mom and sole care-giver Bernie was diagnosed with bilateral breast cancer. Since Bernie is a Dutch citizen, she was not eligible for health insurance in the U.S., and returning to The Netherlands and leaving her daughter behind was simply not an option. So Bernie had to undergo a double mastectomy surgery in the U.S. Fortunately, she recovered well from this surgery and is now cancer-free. Still, the cost of this treatment significantly added to the costs that the family is already facing for Steph's treatment.
Despite all these complications, 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 is recovering from bilateral 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
Thank you so much for your wonderful messages in response to my recent video update. Making that recording was quite challenging for me - and posting it was super scary - but your supportive messages made it worth it! As things develop, I will try to share more via video.
But in the meantime, just a quick written follow-up, since many of you inquired about my mom's health: Fortunately, she is doing well cancer-wise. Ever since her mastectomy, she has been in complete remission. Unfortunately, though, she has recently encountered another issue: Her right hip appears to have severely degenerated (likely caused/aggravated by the hormone therapy she is on to prevent cancer recurrence), to the degree that she now needs a total hip replacement. Since she does not have insurance coverage for this in the U.S., she has arranged to have this surgery done in The Netherlands on August 1st. My dad will be with her, while my sister Michelle will be here in Rochester to help me out for the majority of my mom's absence. My mom hopes to be able to return to Rochester around August 20th.
So that has been another challenge for our family, but one that we can overcome - also because of the help of friends! We're actually grateful that my mom can have this taken care of soon, as she's been experiencing quite some pain and mobility problems. Hopefully, though, this surgery should bring her relief.
And then we'll take it from there. Luckily, the four of us were able to enjoy some family time this summer. I hope your summer has also brought you some happy moments.
With love to all, as always,
Steph (& my mom, dad, and sister)
Not a written update this time, but a video message instead. Please see this link, or the attached video:
With much, much love to all,
With 2019 well on its way, I wanted to share the latest updates with you.
In my previous update (sent Dec. 8), I mentioned that I was slowly coming out of "survival mode." This emphasis on slowly still holds true today. I am still seeing some very gradual weight gain, but now averaging only about 200 grams (half a pound) per month. As for my energy level: some days - some moments - are better than others. That said, things are undeniably better than they were one year ago, when I was getting ready to enter the hospital to start the IV nutrition (TPN).
Unfortunately, there are also some new complications - this time with my amputated leg. The bone that was cut during the amputation (in Feb. 2016) has regrown to yield so-called bone spurs. These sharp, bony prominences put so much pressure on my skin, that my stump is currently not suitable for a prosthesis for risk of skin breakdown. In addition, the soft tissue at the end of the stump has degraded and retracted upward. This has exposed the sciatic nerve, which has caused my nerve and phantom limb pain/sensation to return. So even a soft, non-weight-bearing prosthesis (i.e. one that does not compromise my skin) is not an option right now, as even light touch is painful.
Fortunately, both these complications can be treated. The bone could be re-cut, at the level of where the soft tissue has retracted - essentially, a new, higher amputation. This would give my stump a shape that would be suitable for a prosthesis again, but it would likely not address the nerve pain. And so I was referred to a reconstructive microsurgeon at Mayo (Dr. Brian Carlsen) who performs a surgical technique whereby he implants the severed sciatic nerve into the hamstring muscle. Apparently, this helps to re-establish the neural circuitry, alleviating the phantom limb pain/sensation. (In Dr. Carlsen's words: it essentially gives the severed nerve a "home," causing it to finally "shut up.") This fairly novel surgical method is not yet common for above-knee amputees, but it is showing such great success, that they believe it will eventually become the standard procedure for amputation surgeries (i.e. from the start).
So the bone and nerve problems with which I am struggling could be addressed concurrently, but this would make the surgery a fairly invasive 5-hour procedure. About 6-8 weeks after the procedure (once the wound is healed), I would then need to undergo new prosthetic fitting and an intense rehab program, likely lasting several months. They are hopeful that the bone growth would not return, since they suspect this was caused by the bone-growing medications that I was on for my spine surgery. As for the soft-tissue loss, they cannot guarantee that this would not recur, but they suspect it was at least aggravated by my recent metabolic and weight-loss issues.
So although this surgery could give me significant relief and pave the way for continued rehab, I am not a candidate for it, yet. I first need to be in optimal health (weight-wise, metabolically, etc.), not only to have the strength for the surgery itself, but also to minimize the risk of any post-op complications.
As such, the goal - at present - is no different than it was: I first need to gain more weight, and my GI and metabolic issues need to stabilize. To increase the speed of this process (hopefully!), I will soon be starting a prescription-based nutrition supplement program. These supplements will be custom-made by an NIH pharmacy and will hopefully not contain anything I cannot handle, as the formula will be based on all we have learned in the recent months about what my body cannot metabolize.
In addition, my doctors (and I!) would like to see improvement in my physical stamina, but a traditional physical therapy program is still too heavy for me. So instead, I will be starting adaptive yoga! I just met with a Mayo-based yoga therapist, who will design a customized yoga routine for me that will include adapted yoga stretches and poses (with a special focus on digestion), as well as breathing exercises (to improve my pulmonary function) and meditation. I will be meeting with this therapist regularly, though I am also advised to do daily at-home practice, starting at about 10 min/day, but working up to 20-30 min/day over the next few weeks. I am actually very excited to start this!
So with this plan and with the progress I have made so far, I do believe that I will reach that goal of regained strength and stability. Admittedly, the prospect of then having to undergo yet another surgery is really daunting. For a short while, I reflected on the option of not doing this surgery at all - of just gaining my weight back, getting some stability, and then saying "enough is enough." But as I lay awake last night with a leg that just would not "shut up," I realized that this pain is really not something I want to live with. In addition, my doctors have warned me that the bony protrusions will likely lead to dangerous skin breakdown over time (even without a prosthesis), so I am starting to realize that this surgery is not as "optional" as I initially thought it to be.
From a more optimistic perspective, my doctors were also quick to add that even with all these complications, they strongly feel that "quitting" or "taking the conservative route" is not in my best interest. At every appointment here, my providers ask me what my vision is - what my goals are. My answer: "I want to wake-up in the morning with enough energy to contribute something to society. I want to be able to live on my own, to drive. And although I don't dream of running a marathon, I would love to be able to stand, perhaps even take one or two steps - that is why I agreed to the amputation (my first surgery here) in the first place." Their answer still: "That is certainly not yet unattainable, but diligence and patience are key."
So given my current state and rate of progress / weight gain, this surgery on my stump would not happen before the summer, at the earliest. With the months of specialized rehab that would then follow, this would require us to stay here in Rochester for at least most of 2019, and that is where I struggle most: Not so much for me, but more for those around me - especially for my family, who make daily sacrifices in this current situation. The sense of guilt - in addition to all the other emotions - weighs heavily.
Fortunately, my mom is getting ready for an upcoming trip to The Netherlands, during which I get to spend some time here with my dad. I am hoping he will bring some of the Dutch spring weather, as the temperatures here have been horrendous, dropping to -60(!) degrees last week, followed by lots of snow this week. See below for a picture of the view from our apartment.
Thank you so much for reading through this long message! These updates are challenging to write and require quite some energy, but they also give me a lot in return - the writing process itself is quite therapeutic, and your ongoing support throughout this journey (in so many ways, shapes, and forms) is the impetus that keeps us going.
So onward we go... Till next time.
As always, with love,
Link to Mayo Clinic's Dr. Brian Carlsen: https://www.mayo.edu/research/faculty/carlsen-brian-t-m-d/bio-00094696
After a long period of silence, I'd like to share with you my latest update.
As you may recall, in August, I underwent 2 weeks of daily fecal transplants (in Dutch: poeptransplantaties). The procedures themselves were actually quite manageable, but the side effects were certainly tougher than I had anticipated. I had significant GI discomfort, was extremely fatigued, and even suffered horrible mood swings (my poor mom!). But early on, we also noticed some subtle improvements. My ongoing weight loss quickly came to a halt, and a severe skin issue that I had developed (since my surgeries) completely resolved - nearly overnight.
And so my doctors recommended ongoing transplants - one every 2-3 weeks. So that is what I have been undergoing since August. The aim of these repeated transplants (each time from a different donor) is to sustain the bacterial repopulation of my GI system, as well as to hopefully identify which bacteria are more beneficial for my symptoms than others.
After nearly 4 months of these treatments, I am happy to report that my weight has increased to 39.5 kg (87 pounds), up from 35 kg (77 pounds) in February. I have also been able to slowly diversify my diet. (After not tolerating fruit for a year, I am very much enjoying my "apple-a-day" again!) And I am seeing a very gradual improvement in my energy level. Given these positive responses, we have decided to continue with these repeated transplants, at least for another 3 months.
And so I feel I am slowly coming out of "survival mode." I emphasize the word "slowly," for the progress is not nearly as fast as I would like it to be. My weight gain averages about 80-100 grams per week, which feels gruellingly slow to me, especially given the many more KILOgrams I still need to add. And although I truly feel better than I did several months ago, I still feel far from well.
So as I continue with the transplants over the next few months, my doctors and I will also assess how to convert this "survival mode" into a "living well mode." Once my weight has normalized, how should we proceed for me to feel well - to feel energetic... to be able to use a prosthetic leg... to live that independent life I still envision?
The original plan involved a final surgical correction of my right ankle, but given all my post-surgical complications, we have decided to put this on hold for now. Instead, I have appointments lined-up to look at an optimized/personalized new wheelchair. And in January, my team and I will be assessing the possibility of a new prosthetic leg for me to use in therapy again, once my weight and energy level have further improved. As you may recall from my previous update, I will be especially excited to convert the pendant that now holds the ashes of my cremated foot into an "ankle bracelet" for this prosthetic (see picture).
I will keep you posted. But first, we are looking forward to some family time this Holiday Season. My dad and sister will be with us (i.e. my mom and I) here in Rochester. We will be reflecting on the year that has passed. Exactly one year ago, my mom was about to undergo her double mastectomy surgery, and I was losing weight at an uncontrollable rate. In hindsight, I felt completely "off-track." So during times when the road ahead still feels unbearably long, I remind myself to be grateful that at least I am back on a track - no longer desperately lost in the woods. Likewise, my mom is grateful that she is now cancer-free (and excited to celebrate her 64th bday next Thursday!).
So I'd like to close this update with - once again - my sincere gratitude for your ongoing guidance and support throughout this journey. Each fecal transplant procedure costs $750 - an amount that adds to my other medical and practical expenses here in Rochester. In addition, my mom still has medical bills at Mayo for last year's cancer treatment and ongoing hormone therapy, which average $600 per month. So without your support - not only financial, but also emotional and practical - all of this simply would be insurmountable, and we likely would not have made it back on a track. That thought is frightening and humbling at once.
As such, I truly look forward to journeying onward with you. But for now, I wish you and your loved ones an absolutely wonderful Holiday Season. We've gotten in the spirit with a beautiful Christmas tree (see picture), thoughtfully given to us by good friends here in Rochester.
With so much love,
Steph & family
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.
Steph, you are my hero. Keep going, keep fighting. You are amazing and so is your family. Give your dad a hug for me. I don't think I ever met your mom while we were in The Netherlands. And yes I hope he brings spring with him and a few days of sunshine for you. Sending prayers and good thoughts.
You are an amazing young lady, Steph. Praying for you and for your strength for each day. Amen. xx
Hi Steph, you don't know me, but I knew your sister in Oman and also spent some lovely time with your mother when she visited Michelle. Michelle told us much about you and since then, I have followed your story via Facebook. You are truly inspirational in your journey through all of this since your life changed at age 11. Keep comfort in the knowledge that even people you don't have a personal relationship with are affected by you and the courage your emit.
Dear Steph, reading you has always been inspiring and moving, and this time more moving than ever. If only our admiration and affection could translate into recovery and wellbeing for you. I truly hope that all the prayers, the love and care you are receiving will contribute to climb back this uneasy hill in front of you and to regain your strength.
We wish you a very happy and restful family time together for Christmas. All the best for you Stephanie and your mother.