Natalie Nojaim | CaringBridge
September 24, 2016

Natalie Nojaim

First post: 9/7/2016 Latest post: 4/13/2017
August 2016

Hi, My name is Natalie Nojaim, Age 42 and I live in Scottsdale, AZ.  I have been married for over 16 years to my amazing husband Bren and have two kids Kathryn - Age 8 & Ethan - Age 6.   In addition to my full time job in Human Resources, I work part time as a Cycle and PiYo Live Instructor at a local gym .  In January and February 2016, I completed my first two 10k's - Rock-n-Roll AZ and Phoenix Marathon.  These were the first 2 races that I had ever run in my life. In March 2016, we finally decided to embark on a full remodel of our 23 year old house.  2016 was shaping up to be a great year......until that day in June 2016 that changed our lives forever.

In May 2016, I was feeling a little tired and had what I thought to be a cold/virus the week prior to Memorial Day which culminated in me almost passing out in an early morning Cycle class that I was teaching.  When I went to Urgent Care (my doctor was not available to see me due to the holiday), I was told that I was probably just reacting to the NyQuil that I had taken the night before - the PA didn't do any blood work and sent me home with a list of prescriptions to get filled.  I felt very weak and decided to take a break from teaching fitness classes that weekend.  Although not 100%, I was not about to miss teaching my Memorial Day ride so I taught classes Monday, Wednesday, and Friday of the following week while continuing to work my FT job and prep for our upcoming vacation.  

The following Friday 6/3/16, I received a follow-up call from my doctors office asking me how I was doing and I stated that I thought I was doing better, but it probably would be a good idea for me to come in for a check-up as we were leaving for a family vacation to Cancun, Mexico the next day.  The doctor examined me and asked about the bruising on my legs.  I told him that we were still getting our house back together after our remodel and that I bruise easily.  My doctor said he wanted to get blood work drawn to eliminate any major concerns and gave me an antibiotic prescription to take with me to Mexico.  He told me my blood work would be back by Tuesday, 6/7/16.  

My family and I went to Mexico on Saturday 6/4/16 and my husband and I turned off our cell phones to avoid international charges.  On Tuesday, 6/7/16, I taught an 8:00am PiYo Live class (a cardio intensive Pilates/Yoga fusion class).  As I taught, I began to get dizzy again, couldn't catch my breath and felt extremely out of sorts.   After class, I had trouble walking.  I told my husband that we should call my physician immediately to see if they had my blood work back.  When we called, they said they had tried to contact us the previous Saturday to advise me to go to the hospital immediately for a blood transfusion as my Hemoglobin count registered at 5.7.  My doctor was concerned that I might have an ulcer and internal bleeding.

After speaking with my doctor, I went to the Emergency Room at a tourist hospital in Cancun, Mexico to have my blood work drawn only to find out that my Hemoglobin (the part of the red blood cells that carries Oxygen to the tissues) was down to 5.1 (normal is 12.0 to 15.5) and my Platelets (tiny cell fragments that help stop bleeding) were around 19,000 (normal is 149,000-375,000).  The ER doctor said my face was extremely pale and that my tongue was blue indicating a lack of Oxygen. The doctor in Mexico wanted me to get a transfusion before leaving the country, but my doctor advised me to get home immediately and go to an emergency room in a hospital in the states.   Upon returning back to the resort from the hospital, we made plans to change our flight to return home the next day.   We were traveling Southwest Airlines with a connection through Chicago so the journey would take 8+ hours.   That night, I laid awake holding my husband's hand and told him that I wasn't sure if I was up for the long trip home based on how I felt.   Feeling that every moment that I wasn't getting treatment was critical, my husband got on his phone and booked a direct flight home for me on American Airlines that left at 9am the next morning.   The kids and he would continue with their plans to take the Southwest flight.  That night, we cried a lot about the uncertainty about what was to come.

On 6/8/16, I left Cancun, Mexico alone on the American Airlines direct flight to Phoenix, AZ.  As I said goodbye to my husband and kids at the airport, I cried not knowing if I would ever see them again as I knew that my condition was very serious.  As I sat on the plane waiting to take off, I wrote down all of my personal information and my husband's contact information and told the person next to me about my situation should something happen to me while in flight.  When I arrived home, my mom picked me up at the airport and, on the advice of a friend who was also a doctor, we went immediately to the ER at Banner University Medical Center.  I was in the emergency room at Banner University Medical Center most of the day.  Banner is a teaching hospital so I told the story of my situation many times that day.  Towards the end of the day, one of the doctors came into my room, kneeled down by my bedside, and said I don't want to scare you, but this could be lymphoma.   When the doctor left the room, my mom was so upset - how could he make such a diagnosis without all of the facts? After all, very little tests had been done at that point.

After 4 days in the hospital and many tests including a bone marrow biopsy, one of the Hematologists met with us at 8:30am on 6/11/16 and told me that I had Acute Lymphoblastic Leukemia with 75% blast cells.   This came as a huge shock to my family  as I have always been very healthy, rarely missing work and was only in the hospital as an adult for a combined total of 4 days for the birth of my 2 kids.   Still in shock, my mom began asking the hematolgist about the local hospitals that treated cancer patients and cancer treatment centers.  Within 15 minutes my family and I made the decision to have me transferred to Mayo Clinic Hospital for my treatment program and I was transferred via ambulance to Mayo Clinic on 6/12/16. 

On 6/12/16, I began Induction Chemotherapy.   During my Induction chemo, I went from about 130lbs to 113lbs; I felt like a skeleton and was very weak.  When I was in the hospital, the effects of the chemo hit me on week 2 and came to a climax when I fell in the shower, hit my head on the floor, and ended up in ICU overnight for observation.  I have low blood pressure and the hot water combined with the clumps of hair that were falling out when I washed my hair took me to a state of unconsciousness.  Code Blue was called for my room and when I woke up I had about 8 people surrounding me as I laid on the floor.   I ended up suffering a small stroke (thin subdural hematoma) and that could have been the end for me right then and there, but everything ended up OK.

During my first stay, I was at Mayo Clinic Hospital until 7/2/16 receiving Induction Chemotherapy; unfortunately, it was not successful at bringing me to remission (still 20% blast cells), so I started on a new Immunotherapy drug called Blincyto.   Blincyto uses your own immune system to attack the cancer.  I started the treatment in the hospital for 9 days and continued at home for the remaining 19 days of the cycle.  When the drug was first introduced into my system, I had a pretty bad reaction experiencing Cytokine Release Syndrome.  I had severe flu like symptoms.   The drug was stopped and I was very nervous about restarting the drug, but one of the wonderful doctors at Mayo convinced me that in order to survive, I had no choice but to go back on the drug.  My 3rd bone marrow biopsy from 8/15/16 revealed that  Blincyto was successful at bringing me to temporary remission.  I am now on my second round of Blincyto (28 days of continuous infusion).   The week of 9/26, I will have my 4th bone marrow biopsy in addition to my 5th and 6th rounds of Intrathecal Chemo and will begin all of the prelimary Bone Marrow Transplant testing at the hospital.  I am scheduled to be admitted for my Bone Marrow Transplant on 10/4/16.  

Needless to say - these last few months have been a roller coaster for myself and my family.   Although I post updates on Facebook, I plan to document my Bone Marrow Transplant journey and recovery on Caring Bridge so that I have a record of my experience and can share it with others that may be facing similar circumstances.   The journey ahead will be extremely challenging and I would be lying if I said I wasn't scared and very nervous about what is ahead.   However, I am a very positive person and truly believe that I will come out of this a cancer survivor!

We have set up a YouCaring website for donations for anyone interested in providing a donation to assist us with care and out of pocket medical expenses: https://www.youcaring.com/natalie-nojaim-599752

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