Stephanie’s Story

Site created on February 6, 2019

In April of 2018 I began experiencing extreme headaches and fatigue. I chalked it up to another Multiple Sclerosis relapse. I’ve been battling MS since early 2012. Then in May things really started to change. I lost 10 pounds out of the blue, my gums and tongue became swollen and irritated, I was extremely fatigued and constant pain and bruising all over. I had bloodwork done as a routine MS check and immediately received a call telling me to get to Stanford ASAP. I packed my bags as if I would be there for a couple of days. Upon my arrival with my family I was quickly whisked away into isolation. My neutrophils were non existent making any kind of infection potentially life threatening. My white blood cell count was through the roof. I’ll never forget the hematologist and oncologist coming into the ER and telling me that I have Acute Myloid Leukemia. The first thing out of my mouth was, “let’s fix this.” I had 3 kids at home who needed me and I was not going to let Leukemia take that away from us. I had no idea when we left for Stanford that it would would become my home for the next 9 weeks. I battled adverse reactions to chemotherapy that landed me in the ICU for 10 days fighting for my life. I’ve had countless blood transfusions and platelet transfusions since May. I’ve had 5 bone marrow biopsies. CT scans, MRI’s, ultrasounds, PICC line infection, sepsis, Neutropenic fevers.....the list goes on. I’m home now fighting the mighty fight and visit my oncologist weekly, platelet transfusions weekly and take a chemotherapy daily that seems to be working in my favor. The ultimate goal is remission. Once I reach remission I will be eligible for a bone marrow transplant- the only promising cure for AML Leukemia. When searching for a donor the first choice is a sibling match. I have 3 siblings and thought my odds would be in my favor for one of them to be a match. The results came back and none of my siblings were a match. We began the nerve wrecking search for a non-related donor with bethematch.org (http://bethematch.org/). We received some great news! I am incredibly fortunate to have (2) 100% matched non-related donors who are ready to donate as soon as I’m ready. These donors will ultimately save my life. The goal for 2019 is remission and my bone marrow transplant. The transplant is not a walk in the park but I’m ready for the fight. It will be the most intense chemotherapy and radiation I’ve had before the transplant. My  immune system will be completely depleted before introducing the bone marrow. My body will then need to accept the transplant and I will be living in Palo Alto for 100 days during this entire process. It sounds daunting but I can’t wait......this transplant will not only cure my my Leukemia but my Multiple Sclerosis as well. The silver lining to this long journey! 

Newest Update

GVHD....my new normal

Journal entry by Stephanie Rothbauer —

The journey continues....learning to navigate chronic graft vs. host disease. Basically my donor cells are doing their job a little too well and fighting everything in sight. It’s good for cancer cells that might pop up but not so great for vital organs. I’ve been on a high dose steroid for the past 2 months which gave me some relief but it’s not a long term plan if GVHD decides to continue its chronic path.

My eyes and mouth seem to be most bothersome for me right now. I had my ophthalmology appointment today where they noticed a significant change in the GVHD worsening. We are adding Lotemax eye drops along with the Restasis drops I’ve been using for the last 8 weeks. The concern is potential glaucoma, cataracts, and loosing the ability to close my eye lids. Discouraging but we are hopeful the steroid drops will help clear things up. I’ll also need to continue on high dose Prednisone. I was hoping to be done with Prednisone but no such luck.

I met with my BMT doctor who agreed with the ophthalmologist and concern for my eyes. She wants me to eventually taper off the prednisone as well but to do so we need to get control on the GVHD before it’s too late. I’ll continue my Tacrolimus and adding Jakafi which is a chemotherapy to the mix. I’ll likely stay on the Jakafi long term if it’s tolerable and taper off the prednisone once my eyes improve. The hope is to get the GVHD under control and then I can start removing some meds from my list. I’m ready for that! 

Thankfully I’ve been able to gain some weight. I’m up to 98lbs. Almost triple digits baby! Which is great compared to 8 weeks ago when I was 87lbs. That was concerning! I’ve regained my strength by walking 3-5 miles everyday and I’ve been talking daily online Barre and Yoga classes. My mind and body have never felt better. 

We will be back to Stanford in 2 weeks for Ophthalmology, Gynecology, BMT, and Oncology.  I’m beyond thankful for the amazing team of doctors on my side. I was telling Tad how focused we were on getting to transplant and the silver lining of my MS going away that GVHD was never anything that really concerned us. It’s a whole new world of health setbacks we are learning about.

Despite the issues I’m dealing with I can’t help but feel gratitude. I’m alive and cancer free! Anything that comes my way I’ll tackle that too. I’m talking to you GVHD! 

May you all remain healthy and safe during these uncharted times. 

Much love,
Steph 
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