Heart Failure

After gaining remission on August 24th, we were able to come home only going to COA a couple of days a week for scans and work ups for Eleanor's bone marrow transplant scheduled for September 18th. During this time several tests were performed including an Echocardiogram, chest X-ray, CT scan and blood work.  On Friday, September 4th, Dr. Kutny met us in the hall of clinic and mentioned how her Echo results were considerably lower but he thought they were incorrect and wanted them repeated the following week. Over the weekend Eleanor acted very different. She was very tired, laying around most of the day, only getting up to play ever so often but tiring out quickly.  By Sunday she was rarely getting up except to potty or get a snack.  Chris and I knew something was wrong so we called our NP Carly to explain Eleanor's symptoms.  She recommended we come in to the ER to get checked and ease our minds.  At the ER they did blood work and much to our surprise she was negative for disease.  They told us to watch her and come back on Tuesday for our scheduled clinic visit. Monday she developed a slight cough but still did not run any fever.  We thought maybe she caught something from visiting all the clinics at the hospital.  On Tuesday we checked in for our scheduled clinic visit and explained Eleanor's new symptoms.  She was scheduled to have her bone marrow extraction that day but once we described her new symptoms Dr. McDaniel want to get a look at her lungs.  A chest X-ray and an echocardiogram revealed that Eleanor has a significant amount of fluid on her lungs and in the sack surrounding her heart.  The echo also revealed the same low heart function as was feared, 44 %, which was a drastic change from Eleanor's initial 56% before any treatments.  We were admitted to 8QB for monitoring, but quickly moved to the bone marrow transplant unit as they had a more advanced monitor to watch her heart stats. That night her heart rate went extremely high over and over again. By morning she was much worse.  The doctors were called back in and decided to do another echo, this time resulting in a 29% function.  It was at this moment we were told Eleanor would likely not survive given these circumstances.  Chris and I were in pieces.  How could this happen? We were so close to transplant, had a perfect donor, and did everything just right.  Chemotherapy.  It didn't kill Eleanor's leukemia, but damaged the cells of her heart so badly they would never recover.  We always knew this was a possibility, one of the weird side effects that only effects less than one percent of children. LESS THAN 1% of children receiving treatment.  How is it that it is OUR child? We never thought it would be her.  Eleanor was then moved to PICU, Pediatric Intensive Care Unit where we spent the next few days helping her fight for her life.  On Saturday, September 12, an NG tube was placed down her nose into her stomach to get nutrients as she was not able to keep anything down.  She gagged and vomited ALL NIGHT trying to get her tube out.  She was miserable. That is when she literally gave up on life.  She would not talk, eat, or play.  She would not let you talk to her or anyone else, you could not turn on the lights, TV, iPad, nothing.  She just wanted to sleep.  Sunday morning her heart condition worsened and the doctors told us she would not have long and that we should call in our family.  Thank God she was able to pull through.  We spent 2 more weeks in PICU consulting with Eleanor's cardiologist, Dr. Wally Carlo, Jr..  It was his recommendation that Eleanor have open heart surgery to install a Ventricular Aiding Device, VAD. The VAD would hopefully be able to sustain Eleanor's life for a couple of years and allow her time to be a big sister.  Chris and I consulted with the director of heart transplant and surgery as she explained all details regarding Eleanor's care and the device itself.  A VAD is a battery operated device placed in the heart that pumps blood from the heart to the aorta.  It requires 2 batteries that would have to charge, requiring Eleanor to BE PLUGGED INTO A WALL OUTLET while they charged.  Although this seemed like the scariest and most obsurd idea we knew it was the only way our little girl could live and at least have hope for a future here with us.  At this time we believed Eleanor was still disease free, although we were not certain because we were not able to have the bone marrow aspirate on Sept. 8th due to her new heart condition.  Dr. Wally consulted with Dr. Kirklin at UAB, who would have to approve the surgery due in part because he would be performing it but also because he is a leading authority of the VAD.  Dr. Kirklin had 2 conditions before approving the surgery: an appropriate measure of right ventricle function and a disease free bone marrow sample.  On September 29, Eleanor was put under heavy anesthesia to perform both procedures.  Chris and I were extremely scared this could be the end for our sweet girl as the surgery itself was EXTREMELY risky.  Our little girl is so strong!!!  She pulled through once again and without having to remain on a vent, PRAISE GOD! The bone marrow sample was sent off and the CVP measurement was acceptable to Dr. Kirklin.  Dr. Kutny, Eleanor's Leukemia Specialist, observed the sample of the bone marrow and to our surprise he saw NO DISEASE! He forewarned us though that it is possible for the test that was sent off to UAB could still find it.  At this point we were expecting to proceed with the open heart surgery, although slightly nervous that it could reveal disease.  Chris and I prayed for God's direction, for his plan for Eleanor to be clear and to give us the confidence and peace to pursue His plan and what was best for her.  The next day the test results were back and Eleanor was positive for disease, although barely detectable at . 03 minimal residual disease.  Our answer was clear.  The next 2 days were spent consulting Eleanor's team of doctors and making decisions together. Dr. Kutny sat us down to tell us the worst news we've yet to hear, "There aren't any options that can cure Eleanor's leukemia."  He continued to explain that the bone marrow transplant was the only option that could have cured her and that could only happen if her heart function was 40% or greater.  With a 29% function, we knew then a bone marrow transplant was off the table. After talking with Eleanor's team of cardiologists, there were no other options to pursue.  She was not a candidate for the VAD as she would not be able to withstand chemo with the device due to clotting and platelet issues that would arise.  Another reason why the open heart surgery was off the table was because the very cells that would heal Eleanor's chest and body after open heart surgery are the very cells that contain Eleanor's disease, myleoid cells (Acute Myleoid Leukemia-AML).  It was feared that even if we performed the open heart surgery and were able to give chemo, both VERY BIG IF'S, Eleanor's body would not heal and she could bleed to death.  I can't even explain the despair Chris and I felt upon hearing and thinking through this all.  After much prayer, deliberation, and conversations between Eleanor's team of doctors we discussed what our goal for Eleanor could be. This goal was to now give Eleanor the best life by managing her disease's symptoms while having as much fun as possible.  This gave us a new perspective on trusting God with Eleanor's life and Chris and I knew then what God wanted us to do- help walk her back to Him.