In December 2010, Mackenzie started complaining to us that the top of her right foot was hurting her. I called the pediatrician to get her in for a visit and she ordered x-rays which showed that she had no broken or fractured bones so we figured that she may have hurt her foot while playing and didn’t even realize it until after it began to cause her pain. It wasn’t long after that that she began to complain of her left wrist and elbow hurting and once again, I placed a call to the pediatrician and x-rays were ordered and once again, no sign of broken bones or fractures showed on the films. We began to think that she was experiencing “growing pains” and left it at that since the complaints were so sporadic. This went on for a couple of months until Thursday, February 24, 2011.
I received a call from the school saying that Mackenzie felt sick and they believed she had the flu. I picked her up from school at around 11:00 a.m. and brought her home. She was shivering, felt like she was going to throw up, no fever, but didn’t look right to me. I immediately called her pediatrician and told the office that I felt she needed to be seen, but the doctor wasn’t in that day. I then proceeded to call our local Urgent Care and they were completely booked and couldn’t see her until the next day. After hanging up the phone, I called her father and took her to the local Emergency Department. It was 1:00 p.m. in the afternoon and at this point she couldn’t walk or stand and all she wanted to do was lie down. We sat in the waiting room until approximately 5:30 p.m. that day when Mackenzie picked up her head and said to me “Mommy I can’t see you”. I immediately notified the receptionist who in turn got the doctor and rushed her back to triage. The Emergency Department doctor felt she was having a “complex migraine” and I requested a CT Scan of the head, because just 6 years earlier Mackenzie’s older sister, Jenna, suffered viral encephalitis from a lesion that had formed on her parietal lobe in her brain which left Jenna wheelchair bound for the rest of her life. It was at that point a pediatric doctor was called in to examine Mackenzie.
The doctor ordered numerous labs as well as a CT Scan of the head for Mackenzie. The pediatric doctor was asking me questions and asked if she could do a more intense lab workup because she wasn’t convinced that Mackenzie had the flu or a virus for that matter. She was asking me questions if Mackenzie had been in contact with ticks because she wanted to run some tests to rule out Lyme Disease and a few other illnesses, but she wouldn’t elaborate at that time. By 8:00 p.m. that evening Mackenzie was sitting up on the bed eating a salad and wanting to go home. No symptoms at all. It was as if nothing had happened at all that day. Her symptoms left as fast as they hit her earlier that morning. The doctor discharged Mackenzie by 9:00 p.m., assuring me that she would be in touch with me with the results as soon as she got them back. So on our way home we went.
The next day Joe and I had a follow up appointment for Mackenzie’s sister, Jenna, with her surgeon in Philadelphia because she had just gotten home from having surgery with a small bowel obstruction two weeks earlier from the Children’s Hospital of Philadelphia “CHOP”. We were just leaving the doctor appointment with Jenna when I received a call from the emergency room doctor that Mackenzie’s labs were back and there were signs of something suspicious in her blood work and she needed to see a hematologist/oncologist on the following Monday. I couldn’t breathe much less speak so I handed the phone to my husband and he pulled over to the side of the road to take the call. Joe hung up the phone and immediately called the Oncology Department at CHOP. They advised him to bring Mackenzie to their Emergency Department as soon as we could get her there. So while the shock and disbelief were settling in on our 2 hour drive home from Philadelphia with Jenna, Mackenzie was at a school bazaar with her friends enjoying her day. We finally got home and told Mackenzie’s older brother, Brandon, what the doctor had said about the lab results and at that point we pulled ourselves together to begin yet another one of the hardest journeys life has given us only now it was with Mackenzie.
Saturday morning, February 26, 2011, came and we got in the car with Mackenzie and began our travels to CHOP to hopefully get some answers. After 2 hours of traveling we finally got to the Emergency Department at CHOP and they took us back immediately and began doing lab workups around the clock and testing for different viruses because they were not convinced it was oncology related and that she may have mono. She was admitted and after two days of blood work, spinal taps and bone marrow aspirates we were told that a family meeting needed to be held to discuss Mackenzie’s diagnosis and treatment going forward. Now mind you at this point we had no idea what the doctors were going to say but we called the immediate family together for this meeting that was held on Monday, February 28, 2011. It was then that we were told that Mackenzie had been diagnosed with Acute Myeloid Leukemia “AML”. I sat in disbelief because in my mind this couldn’t be happening. We had a disabled child at home that needed 24 hour care and a 15 year old son that had to hear that his baby sister was diagnosed with cancer after still coming to terms with his sister Jenna incapacitated from an acquired brain injury. We were mortified to say the least. I will never forget the look on the oncologist’s face as her eyes filled up with tears and she looked at me and said “I’m sorry”.
And so our battle began with the horrific side effects, the aggressive chemos, spinal taps, bone marrow aspirates, fighting infections, isolation, the weeks away from home only to find out that Mackenzie would need a bone marrow transplant and that her sister Jenna was a perfect match to be her donor.
On the morning of July 22, 2011, Jenna was taken away and sedated and began the process of donating her bone marrow to save her sister Mackenzie’s life. It has been quite a long and trying journey and Mackenzie as of today, March 29, 2013, is still cancer free and gets to celebrate two birthdays: her original birthday of July 7, 2003 and her 2nd birthday of July 22, 2011. Mackenzie has just this school year gotten back into the swing of things of being able to hang out with her friends, have sleepovers, play soccer and basketball. She is doing her part of living life to the fullest!
-Angie and Joe Marx