After three days at Stony Brook Hospital Julia looked at me with her big, beautiful, blue eyes and said "okay, Mom, tell me what's going on-it's my body and I have the right to know." Julia sat on my lap as I tearfully told her the diagnosis. Her eyes filled up, but she took my hand and said "Mommy, it's going to be alright. All I need is my family and friends to get me through this."
Soon after, Julia started frequent chemo treatments and lost her hair. She missed all of 2nd grade and only got to attend 3rd grade for a short time.
Luckily we got to sprinkle in some special memories with Julia during this time. We took her to Florida in February of 2013 to swim with dolphins and visit Disney World. For Julia's 9th birthday in April of 2013 we hired Pet Land to do a demonstration of different types of animals that you may want as a pet sugar gliders, parrots, turtles, snakes, Do you see common thread? Julia was a true animal lover! Julia was always begging us for new pets-a dog, a hedgehog, a duck, dogs, cats , guinea pigs... Julia continued maintenance chemotherapy, but enjoyed life.
Later that year Julia again wasn't feeling that great, with a cough and fatigue. I will never forget her playing with her little brother: they were laughing and running around like two little nuts. After a short stint she said, "Stevie, I have to rest for a little bit I'm so tired." This was uncharacteristic of Julia’s boundless energy so I immediately called her pediatrician and oncologist. I knew something wasn't right. And just like that we were hit with another devastating blow-the beast was back, Julia's cancer was back.
My poor little baby was crying and yelling, "Why? Mommy, Why? I did everything they said! I took all the medicine! Why?" It's a question I still ask myself.
We went to NYU and Sloan-Kettering for second and third opinions. At Sloan we met Dr. Trudy Small. We felt comfortable with her and I felt like she would save my daughter's life. Dr. Small called me on Mother's Day with a present of sorts- she found a 10 out of 10 bone marrow match for my little girl. My first thought-Julia is going to beat this once and for all! Unfortunately, Dr. Small passed away unexpectedly in June of 2013. We were devastated to lose Julia's attentive, smart and comforting doctor who had given us such hope and comfort.
We spent 10 months living in and out of the NYC Ronald McDonald house as the doctors tried to get Julia's MRD negative level to the point needed for a bone marrow transplant.
Unfortunately that never happened…
As we spent Christmas of 2013 in the hospital we learned the last drug (TVTc) did not work. Julia turned to me one day and said, "Mommy, I'm having that pain again in my legs." I tried to convince her (and myself) that it was pain from the medication GCSF. She said "Mommy, I know the difference-I'm having Leukemia pain!" Once again her beautiful, blue, wise eyes looked right at me and she said, "Mommy, I don't think I'm going to beat this. If I don't and I have to go, you can't come with me, you have to stay with Stephen because he really needs you.”I hugged her and I cried and told her she wasn't going anywhere without me. I promised her that I won't let her die. Julia was right the treatment did not work and the cancer was back.
Sloan tried another experiment (Blintaumbe). She was in and out of the ICU and we later learned that this drug did not work either.
We then telephoned what would later become our third hospital, The Children's Hospital of Philadelphia. CHOP was doing a T-Cell Trial in which a patient’s T-Cells were removed (which Julia had already done at Sloan), altered, and then re-infused into the body the the hopes that the altered T-Cells would attack the cancer cells. CHOP worked on Julia’s T-Cells and while we waited our poor Julia continued to suffer terrible nose bleeds as well as frequent blood and platelet transfusions.
On April, 6 2014 we went to CHOP where Julia was infused with 10% of her T-Cells. She spiked a high fever and had a terrible headache. We were actually happy with these symptoms because it was a sign that the T-Cells were working. We took her to the ER. Julia was only the 26th child to have this experimental treatment done. Julia was also unique to this study because she was the only patient to have 100% cancer levels in both her bone marrow and her blood. We received the news that Julia was CANCER-FREE with elation and relief.
Despite the cancer-free diagnosis, Julia remained at CHOP for additional months and brutal weeks in ICU (including a biopsy of her lung, a blood clot in her lung as well as a staph infection in her central line). We got permission to go home on June 6th, 2014 with directions to give her IV antibiotics at home. Yet, the next day Julia suffered sudden and unanticipated heart arrest on our couch. My five-year-old son yelled “Come quick, Mom! Jules is breathing funny!” A neighbor rushed over to help us start CPR. The local fire department shocked her back twice,and Julia was then intubated. It was earth-shattering to see my daughter in that hospital bed. But the next day they took out the breathing tube-Julia had miraculously survived sudden death. Julia’s first words were Mommy I want to go home! I remember not caring if she was brain-damaged or if she couldn't walk, I didn't care as long as I had my baby girl that is all that mattered.
Weeks later we returned home with Julia now wearing a defibrillator life vest. I will never forget the four of us sitting on the couch that first night watching The Lego Movie-I felt like the luckiest woman in the world with my beautiful family. I didn’t want that day to ever end.
Julia had maybe 10 days of being a kid before we learned again that the cancer was back. Blood work showed cancer blasts in her blood (I wish it could physically show itself so that I could kill it with my bare hands!) The doctor broke the news to Julia and she screamed, “No! No! Please get me out of here!” As we were driving home Julia and I were crying so hard and she said, “Mommy, please don't let me die! Please, Mommy, save me!” She had fought so hard! The hospitals had nothing left to offer. We called everyone and everywhere, but there was NOTHING!!!
Yet right to the end, my compassionate and kind and selfless daughter protected me. See, I never thought she was actually going to die, I thought I would save her. And on August 25, 2014 after returning from an ER visit our last words were:
“Mommy, please never leave me.”
“Never Jules it's you and me, always!”
“I love you, Mom.”
“I love you so much, baby. Lay down, you need to rest you've been up all night, lay on Mommy’s side.”
Those were the last words spoken as she then laid down and started to die. I held her hand and told her I loved her so much and it was okay to let go.
At 5:55 PM on August 25, 2014 I lost my little girl and my best friend forever.
My mission is to honor Julia with the same compassion and kindness she displayed in her own short life. During hospital stays she would say to me, “when I am better we have to do something for these kids.” Even during her own battle she thought of others. And until my last breath I will strive to be a voice and a source of comfort for these incredibly brave children and their sacrificing families. No parent, grandparent or sibling should have to live a life without their most cherished blessing.
