These are words every mom hears from their child at one time or another, typically when another school day is on the horizon or it's time to clean their room or do chores. Bre isn't that kind of kid so when she said that to me on August 8, 2017 I knew something just wasn't right.
This is our journey....
I am Breanna's mom, Lori. I am a Registered Nurse and have been for over 12 years. My career in nursing was limited to Labor and Delivery/PostPartum, The Minnesota Sex Offender Program and Acute Psychiatric care. In January 2017, I took a monumentally HUGE step outside of my comfort zone and took a job at The University of Minnesota Medical Center in the Blood and Marrow Transplant unit. I had never in my life thought of working with Oncology patients or people suffering from blood disorders and in fact had ZERO clue as to what exactly BMT (bone marrow transplant) was. I was still learning the nitty gritty details of the BMT process when Bre said those nine fateful words to me and then showed me the huge bruise on her leg that night in August just before I left for work. At first I thought, well that looks like she must have smacked her leg really hard on something in Wisconsin Dells where she had been with her dad, his wife and all of his family just days earlier. Then I started putting together other things she was telling me... She was tired all the time, she had other random bruises on her arms and legs, her leg was insanely painful and she could hardly walk up the stairs without stopping to catch her breath and when she started bleeding, it didn't stop for a LONG time. My stomach sank and I thought my heart would beat out of my chest... ALL of those symptoms were things my PATIENTS had reported before they were diagnosed with a life threatening disease. No...not possible...I told myself. She is about to start her SENIOR YEAR of high school! She is an athlete! She is a healthy kid! No freakin way is she sick. No. No. No.
I told her I would take her to the doctor in the morning when I got home if the bruise hadn't improved and she wasn't feeling better; trying to keep my composure as much for myself as for her... but I cried the entire drive to work...and its a90 minute drive.
The next morning, Bre said that nothing had changed and I told her to be ready to leave when I got home from work. We went to Urgent Care and the interaction with the doctor was one of the most vindicating moments I have had as a mom and as a nurse. She looked at Bre's leg and said "Oh that looks like it could be a tick bite. We should do testing for Lyme's Disease and put her on antibiotics." Now mind you, I had just gotten off an overnight shift in Minneapolis, had driven for 90 minutes and had very little sleep. My BS tolerance at that point was really low. My reaction was "No. I want a CBC done first." A CBC is a Complete Blood Count and gives a good overall view of what the body's immune system is doing and how the bone marrow (where all those cells are produced) is functioning. The doctor gave me a disgusted look and said "Well, that's not really indicated..." and my reply was "Look, if her CBC comes back and her platelet count is ok then you can run any other test you want. But right now, a CBC is what needs to happen." So, begrudgingly, she ordered the test and the lab came and Bre had her blood drawn for the first time in her entire life. They told us they would have preliminary results in roughly 10 minutes. After nearly 30 minutes and still no word, I was standing at the door to go find her when I heard in the hallway, "Did you see the platelet level? Get this to the hospital lab and have them do it again." Breanna's voice behind me was laced with fear as she said, "Platelets...mom what are those? Are they talking about me?" It took every ounce of composure I had to put the sinking feeling in my heart aside and stay positive for her, even though I KNEW what the possibilities were. "Yes, Bre. They are talking about you. But they don't know anything for sure, so we will have to see a specialist that knows more about this kind stuff and see what they have to say." She nodded her head and we sat quietly until the doctor came in, looked me in the eye and said, "Good call mom. You were right."
We met with a specialist in blood disorders a couple of days later. He was fantastic and put all of us at ease. Bre had already had dozens of tubes of blood drawn and then we were told he wanted to do a bone marrow biopsy to determine just what we were dealing with. Bre was such a trooper; she agreed to it and did it that day...WIDE AWAKE! (Bone marrow biopsy's are CRAZY painful). We waited for the results and as soon as he called me and said, "She does NOT have any kind of cancer!" I was elated! Oh Thank GOD! But then what IS wrong? Quite simply, he couldn't diagnose anything specific, so Bre had weekly blood work and a multitude of other tests done for months.
Because things were not improving, she was referred to the Bone Marrow Failure Clinic at The Mayo Clinic in Rochester where in January 2018, just before her 18th Birthday, Bre was diagnosed with Aplastic Anemia. That day we were told what I already knew; that the only cure was a bone marrow transplant. We made the decision to have her care transferred to the University of Minnesota Masonic Children's Hospital and the Pediatric BMT Clinic with world renowned BMT specialists because they are the pioneers in this field and are the best at what they do. Also, as fate would have it, I work on the Adult BMT unit that is just across the river from the Children's Hospital.
Now seriously, if you don't believe in fate, our story should convince you! What are the chances that when I made a speciality change that it would be to the BMT unit? Even her doctors are speechless when they learn where I work! I knew in that moment that God had put me on this path and put me in a position to see and learn what I needed to in order to recognize the signs of the disease threatening my daughter's life.
So why am I starting this page? Thankfully Bre has fantastic insurance coverage, but the financial strain of this process is more than I ever anticipated. Even though I see patient's and their families deal with this stress all the time, you don't get it until it's your daily struggle. The unexpected expenses add up quickly. My pride had kept me from asking for help for a long time. But reality has smacked me in the face and it is this : Bre's transplant is happening much, MUCH sooner than anticipated. I thought we had a year or so but her team wants to move her transplant up to this Summer since she is still healthy and in perfect condition for transplant. Even though we were planning on moving to the metro area eventually, this has pushed our timeline ahead rapidly. Bre has to live within 30 -45 minutes of her transplant site before and for 1-2 years after her transplant. She will have to take multiple medications daily, the cost of which are significant even with insurance. She will need assistance with every activity of daily living for months as she recovers. She won't be able to work or go to school for at least 6 months after transplant. She likely won't be able to drive herself to appointments, which are daily initially after she comes home, then a bit more spaced out for the next 100 days or so, which means she will need someone to drive her (myself or Steve).
A large financial factor for our family is that even though she is my child, because she is over 18 I cannot take FMLA leave from my job and therefore will have to take an unpaid leave of absence to be with her in the hospital, which is 4-6 weeks on average, and to care for her after she comes home. I have exhausted all my paid time off due to the multitude of doctor appointments at clinics/hospitals in Mankato, Rochester and Minneapolis and therefore I will have no income during that time.
Maddie and Carter are 14 and 13 years old and their lives are being directly impacted as well so I don't want to leave their needs out of the narrative. They will also be moving and therefore changing schools, towns, etc. They will need various things to prepare them for school and activities in their new community, the expense of which adds up crazy fast at their ages! Their sister is sick and they have to uproot their lives much sooner than anticipated. Any way you look at it, that sucks; but they have been amazing and accepting of the changes that are happening. They are amazing kids and deserve the world.
Finally, Breanna was accepted to every college she applied to and she is hoping to take some online classes as she is able to while she recovers, but she will have to pay for those classes out of pocket since she can't take a full load of credits to get financial aid. I want to ensure that she can do that and she won't incur any kind of debt in the process of furthering her education.
This girls strength and resolve are unmatched by anyone I have ever seen. We all want her to be able to recover from this disease and have the life she deserves. Anyone that has ever met Bre knows that she is a fighter and God willing she will fly through this with her never give up attitude and we will see her amazing smile and hear her quick witted comebacks for many, many more years to come.
Thank you all for your prayers, your generosity and your kind words during these past months. We are forever grateful to have such an outstanding community supporting Bre and rooting for her!
Blessings to you all!
Lori, Steve, Jordan, Breanna, Madison and Carter
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