Round 1 Recap

Round 1 was full of firsts for us.  We had no idea of what was in store for Eleanor or ourselves.  We asked the doctors and nurses so many questions, hoping to understand as much about what was ahead of us as possible, sometimes getting answers that only made us worry more.  It was a learning process for sure! Learning about the process that would hopefully lead to remission, learning about what chemos would cause what side effects, and learning how much information we were comfortable knowing.  It soon became OVERWHELMING to say the least. 

 I refused to go to the internet for information.  I did not want to hear statistics, or her "chance of survival".  I only wanted to take each day as it came and pray that God would heal our little girl through this process.  Thinking about the "whole" picture was far too scary.  Each day brought both challenges and triumphs as we slowly gained more and more clarity of what MIGHT come next.  Our doctors and nurses were so patient and caring as we hounded them with questions and concerns.  They helped us gain a positive perspective early on that helped us get through some of the most uncertain times.  God placed them here in our path to help comfort us, this I have no doubt.  I remember a conversation Chris had with Danielle, our first nurse.  He couldn't understand how she dealt with such loss and sadness daily working in this type of environment. I remember her response so clearly as it was so shocking to both Chris and I.  She said, " this isn't a sad place, there is much more good than bad here".  Chris and I both looked at each other in shock.  To us 8QB was a death sentence, a place where kids came to fight against something more powerful than them, something that even science couldn't understand or defeat.  The days ahead proved otherwise and our outlook changed drastically. 

 On January 28th, Eleanor's primary Hematologist and Leukemia Specialist, Dr. Kutney walked into 813 smiling.  He said he had good news.  He began to share the results of Eleanor's genetic testing and explained that Eleanor's type of leukemia responded well to treatment and had a favorable outcome.  This certain type of leukemia is called T(8,21) Core Binding Factor Leukemia, which occurs in less than 20% of cases and typically does not require a bone marrow transplant.  Translocation 8, 21 also has a low rate of relapse. 

Dr. Kutney's drawing of T (8, 21)

 The genetics testing also confirmed that Eleanor did not have 3 unfavorable genetic markers that would have rejected chemo treatments.  This new information changed everything for us. It no longer felt like our child would be taken from us, but that she had a great chance of beating this terrible disease, if it was God's will.  I remember telling Chris how I thought we would look back at this time and think, " oh, yeah, remember that time Eleanor HAD leukemia?"  We both felt like God was telling us to just trust HIM. So we did.  I often thought back to Eleanor's dedication at NHBC, how we gave her back to The Lord, trusting in his will for her life.  One of the hardest concepts to understand in all of this is the fact that we as her parents are not in complete control.  He has a separate plan for her and even at 5 years old he's using her for a purpose we can't understand but learned to trust in.  After receiving this new information regarding her genetics, our attitudes changed drastically.  There were more smiles, more laughs, and more trust that not only COULD God handle this, but that he WOULD! 

Information about Round 1:
  • 10 days of chemo, then 32 days for her counts to recover 
  • Total of 42 days in the hospital
  • 9 platelet transfusions
  • 5 blood transfusions
  • E lost her second tooth!

  • 1 lumbar puncture with chemo dose
  • Flu like symptoms with fever develop on Day 11
  • Mouth sores develop on Day 12, making eating and drinking VERY uncomfortable
  • Terrible Rash developed on Day 14 lasting 10 days
  • Doctors couldn't identify the type of rash and placed E on isolation ( can't leave the room ) for 10 days
  • Mommy had to have blood tests to make sure whatever was causing E 's rash wouldn't pass on to Baby Cora.
  • March 3rd, Bone marrow extraction with spinal tap- NO LEUKEMIA!
  • Doctors tell us that she is in REMISSION!
  • Sent home for a week
We're HOME!

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