Ashlee Wajer | CaringBridge

Ashlee Wajer

First post: 6/30/2016 Latest post: 7/14/2016
Family members and friends have been inquiring how they can help Ashlee out financially.  Every little bit helps!  To make a donation, please make checks payable to:  Ashlee Wajer Donation Fund.  You can mail your check to the address below, drop it off at any U.S. Bank branch location or through this link  HTTPS://WWW.GOFUNDME.COM/ASHLEEWAJER (https://WWW.GOFUNDME.COM/ASHLEEWAJER)   

Ashlee Wajer Donation Fund
2104 4th Avenue South
Great Falls, MT  59405

Ashlee has been diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH) and Aplastic Anemia (AA) which complicates her treatment options and is currently seeking a second opinion by a PNH/AA specialist on the East Coast.  Unfortunately, her insurance has limited her to providers within her network that have very limited or no experience with PNH/AA.  PNH is so rare, that most doctors have never seen or treated a patient with the disease.  One of the single most important things she can do is to see a specialist who is very familiar with the unique needs of a PNH patient and seek the best course of treatment.

The only cure for Ashlee’s disease is a bone marrow transplant.  She will need a family member as a donor.

Ashlee will use the donations to pay her medical expenses, travel, living expenses and monthly cord blood fee while they go through this difficult time.  Currently, Ashlee is living in Missoula, Montana which is three hours away from her home and family so that she may remain close to her son, Maverik who was born prematurely at 28 weeks and remains in the Neonatal Intensive-Care Unit.  Ashlee continues to receive her blood and platelet transfusions every couple of days along with her weekly Soliris infusions.  Ashlee's Bone Marrow Transplant will occur out of state where she will be hospitalized just prior to and after her transplant for the 30 days.  She will need to maintain residence within 30 minutes of her transplant center for a total of 90-100 days post-transplant and until engraftment takes place (Engraftment means the your bone marrow and immune system is beginning to recover.).

Now back to the beginning…Spring 2015, Ashlee was contacted from National Bone Marrow bank that she was a bone marrow match for an individual in her region that needed a bone marrow transplant.  Soon after being screened, she was notified again, this time she was deemed to be a perfect match and they would contact her soon to begin the process of becoming a bone marrow donor.  Unfortunately, she never heard back on becoming a donor—we do not know, but something may have happened to the recipient.

Over the next few months, Ashlee began noticing more bruising upon returning from her weekend hunting and camping trips in the mountains.  During this time, she was no longer eligible to donate blood as she was “too anemic.”  In fall, she saw her primary care provider for a routine exam and mentioned to him that she was not able to donate blood for the past three months.  The doctor decided to run some lab work on her, even though she was a healthy, vibrate young lady.  To his surprise, her platelet count was 80—the normal range is 150-450.  He referred her to an oncologist who began following her labs every other week as they remained stable with platelets in the range of 80.  In November, Ashlee found out she was pregnant and continued to have her lab work completed biweekly.  January 2016, the oncologist recommended that she undergo a bone marrow biopsy as her blood counts were beginning to plummet.  The results of the biopsy did not give a definitive diagnosis, however they did rule out leukemia.  Ashlee was now referred to UCLA to see a high-risk neonatologist and hematologist.  One week prior to leaving for UCLA, she received her first transfusion, 2 units of packed red blood cells.  Ashlee was seen in February and April 2016 at UCLA with an extensive lab work-up, however they left with no answers.  They did state her condition may be evolving into Aplastic Anemia or Myelodysplastic Syndrome.   During April and May 2016, Ashlee had two emergency room visits for uncontrollable blood nose with decreasing platelet counts.  Her platelet counts are now hovering in the single digits.  The first ER visit required cauterization and the second required rhino packing.  Ashlee now is receiving transfusions weekly for blood and platelet transfusions. 

On May 18, shortly after receiving her blood transfusion, Ashlee began to complain of chest tightness and shortness of breath.  The chest pain now progressed around her rib cage and rested between her shoulder blades.  A few minutes later she began throwing up and was clammy to the touch.  She went to the ER and was told it is likely developing heartburn.  Her blood pressure values also began to increase since her transfusion of 3 units of blood earlier in the day.
On May 19, Ashlee took the day off from work to rest.  That evening she began having the same symptoms as the night before and called her mother, Kathy who is a paramedic and was at work instructed Ashlee to to come right to the station so she could assess her.  Ashlee’s blood pressure was 200/110 and her right lung sounded, “wet,” which we know now was developing pulmonary edema.  Kathy called her Obstetrician and he directly admitted her to the hospital where he started medications to bring her blood pressure down.  After her Obstetrician assessed her, she was airlifted from Great Falls to Missoula, Montana for an emergency C-section.  Ashlee delivered her bundle of joy, Maverik Michael Monteleone weighing 2.3 pounds, 14.5 inches at 0813 on May 20, 2016.

On May 25, Ashlee undergoes her second bone marrow biopsy.  She receives the diagnosis of Paroxysmal Nocturnal Hemoglobinuria with Severe Aplastic Anemia.

With much faith, we believe Ashlee will be cured of this rare disease and she will be able to live a long and healthy life with Maverik and Ryan.

What is Paroxysmal Nocturnal Hemoglobinuria (PNH) and Aplastic Anemia (AA)?  PNH is a rare (seriously - one in a million), life-threatening blood disease.  AA is when your bone marrow stops making new blood cells.   Ashlee has total bone marrow failure complicated by aplastic anemia.  This means she doesn't make red blood cells to carry oxygen, white blood cells to fight infection, or platelets to clot her blood--even the most minimal bleeding will not clot.  She becomes short of breath with the slightest activity after only a little exertion, a common cold could take weeks to recover or result in a hospitalization.  She is currently receiving weekly treatments of Soliris infusions; she will need these for the rest of her life.  Ashlee is transfusion dependent and is continues to receive her transfusions every 2-3 days.  Soliris may help reduce the number of blood transfusions she requires as well as decreasing the risk of blood clots.  Soliris has several side effects but the goal is to improve her quality of life.  It is also expensive - a single year of treatment costs $440,000.

For more information about PNH, you can go to the website www.aamds.org (http://www.aamds.org/)  Interested in becoming a donor, you could save someone else's life in her name.  Please go to this link:  https://join.bethematch.org/ to find out about bone marrow donation.  If you are in the military and would like to register as a donor, please use this link:  https://bethematch.org/support-the-cause/donate-bone-marrow/join-the-marrow-registry/members-of-the-u-s--military/

Baby Registry:
http://www.amazingregistry.com/baby-registry/ashlee-wajer/ryan-monteleone/registry.ashx?a=91315929

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