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10/25/2016 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Nataly was diagnosed with Acute Lymphoblastic Leukemia on April 20, 2016. She started having a fever on Wednesday April 13th. We took her to her pediatrician on April 14th at that time she was diagnosed with a virus and was given IM ceftriaxone as precaution, as she had pneumonia back in January. We went back to her pediatrician on Saturday for a second ceftriaxone shot. She was still having fevers at this point, but did not have one at the office visit. She again spiked a fever Saturday night but no fever all day Sunday. We thought we were over the illness. Monday evening she again spiked a fever. At this point I was convinced something more was going on. Tuesday April 19th I took her to the pediatrician for the third time and saw the nurse practitioner. This time they swabbed her for the flu and sent her for labwork. That afternoon at home her temp kept rising getting up to, I believe, 103.8. She was letgargic, I was anxious. I must have called her pediatricians office 10 times to find out if they had heard anything from the lab. The last time I called I remember telling them I was about ready to just take her to the ER. Nataly and I were laying in my bed, she was sleeping, I was worrying. At about 4pm my phone rang and it was Dr Hartle. As soon as I heard her voice I knew it was bad news, she was off that day, so her calling me couldn't be routine. She told me Nataly's blood levels were all very low and something was wrong with her bone marrow. I just remember going numb and starting to flip out on the phone. She told me I had to get her to Strong NOW! I hung up with her, after assuring her I was ok, though I was not. I called Jay in an absolute panic and told him the news and to meet us at Strong. I was shaking so bad at this point I didn't know how I was going to drive. I called my mom and my best friend. Neither of them answered. I don't know how, but I somehow loaded her into the car and drove her to Strong ER. I parked and was crying hysterically carrying her into the hospital. I remember a woman asking me if we were ok, all I could get out was "no" and hurried inside. When we got into the pediatric ER they were already expecting us. They put us into a room and quicky moved the other patient in our room to another room. This made me realize just how serious things were. The hem onc doctors were there with us within minutes. They ordered more blood work and a chest xray. They said she had 1 of 3 things. She may have Aplastic Enemia, Leukemia or unlikely a virus that temporarily was attacking her bone marrow. I held onto the hope of the virus even though they told us it was unlikely. Nataly was admitted to the PICU that night.
We spent 2 days in the PICU. She had absolutely no immune system and needed blood transfusions. She received 2 blood transfusions while in the PICU. On Wednesday April 20th she had a bone marrow biopsy done. Later that afternoon we sat down with Dr Mullen and the rest of the team and they said Nataly has Leukemia......I have never cried so hard and so much in all of my life. How does my HEALTHY child have leukemia? All she had was a fever. I couldn't believe it. We had tons of questions and the doctors were so compassionate and caring and took the time to answer all we had to ask.
The next day April 21st Nataly was transferred to Golisano Children's Hospital at Strong (7N, room 13) this would be our home for the next 14 days. The final results came back from the bone marrow biopsy confirming that Nataly had B-cell Acute Lymphoblastic Leukemia. The next day Nataly had her second bone marrow biopsy, lumbar puncture had her PICC line placed and started chemo.
On Friday April 29th we found out that the cytogenetics of her leukemia were faverable (trisomy 4 & 10). She would remain standard risk.
Nataly spent a total of 16 days in the hospital. She recieved 4 different chemo meds, steroids for a total of 28 days, IV fluids, blood, and platelets while there. She had 2 bone marrow biopsies and 2 lumbar punctures.
On Thursday May 5th we went HOME!!!!!! I remember being so excited but so incredibly nervous at the same time. I was certain we would walk through the door at home and she would again spoke a fever, thank god I was wrong! She had been fever free since around April 27th (?). Her ANC on admission was 0, on day of discharge she was 620!!!!!
Friday May 20th Nataly had her 3rd bone marrow biopsy, 3rd lumbar puncture, she had her PICC line removed and mediport placed in her chest. On Wednesday May 25th ( that was a looooong 5 days) we got the call tgat Nataly's bone marrow was clean! She was offically in remission. This was AWESOME news!
On Monday September 12th Nataly's hair started coming out by the handfuls. By Wednesday the 14th she had noticeable bald spots and had hair was in her food when she tried to eat. We decided to shave Nataly's head at this point. This was so hard for me. I had been anxious about this since diagnosis and here it was.....I cried a lot. My girl was now visibly sick to the world. This absolutely broke my heart. I still after 3 weeks look at her and my eyes fill with tears. No 2 year old should have to go through this, especially my happy, sweet girl.
To date Nataly has had 3 bone marrow biopsies, 10 lumbar punctures, 15 visits to clinic, 9 different chemo meds, steroids, weekly Bactrim, IV fluids, chest xray, renal ultrasound, echocardiogram, blood and platelet transfusions. She had been neutrapenic 3 times including diagnosis. Neutrapenia at diagnosis lasted 16 days, September 7th for 6 days, September 18th for 7 days (probably neutrapenic for the full 2 weeks but steroids can artificially inflate the ANC, which she was on during the in between week)
Nataly and our whole family has been through so much in just 5 short months but we are hopeful Nataly will keep moving forward and stay well. She has the most infectious smile and is always happy!
Now that I finally have this thing up and running I will try to update weekly.
Thank you for reading about Nataly's story! We are always thankful for prayers for our girl!