‘We noticed Milena was randomly limping, would have a sore tummy, and always wanted to be picked up and carried around. She started to scream at night.’

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“The first time I laid eyes on my beautiful daughter Milena, was early morning April 11th, 2015. I knew, from just those first seconds with her, she was special. I couldn’t believe that I had made such a gorgeous, loving little human. She had the cutest little curls and was always smiling and laughing. She would make people turn their heads and smile whereever she went. She is always checking on others to make sure they are ok and smiling. Our little 3-year-old has the biggest heart of gold.

Courtesy Angela Pronesti

It was around the beginning of February 2018 when we started to notice Milena acting a little differently. We had just had our second daughter Jayla on January 27th. We started to notice that Milena was randomly limping, would have a sore tummy, and always wanted to be picked up and carried around. She started to scream at night. We had no idea what was going on with her. We went to numerous pediatric doctors and through different emergencies in Toronto. They all said the same thing: ‘She must be constipated’ or ‘She is probably just jealous because you have a new baby and she is acting out’. They also said she must be just having growing pains in her legs. We noticed she started to lose weight. Doctors continued to tell us she was fine and was still in the normal range of weight for her age. But Charles and I just knew something was not right. We had a gut feeling that something was going on with our little girl, but we were not getting any answers. I remember a moment where Charles looked at me and said, ‘She could be riddled with cancer and we don’t even know it’. I told him that was impossible, not our little girl.

Courtesy Angela Pronesti

On April 17th, 2018, I packed both girls into the car and drove to St Joseph’s Hospital in Toronto because they have a pediatric emergency department. Milena was no longer walking, and I knew I needed to find out what was happening to my little girl. I remember both kids were crying, and I was standing in the room waiting for her to be seen, sick to my stomach. When we finally saw the doctor, I told him my daughter can’t walk or stand. He ordered an x-ray on her hips and legs and the results showed no fractures or anything to her bones. We stayed overnight and they started her on fluids because she was dehydrated. She was not allowed to eat anything because they wanted to run more tests in the morning. The next day, a doctor came to see us. He was honest. Something that we had been waiting for so long. He looked at me and said ‘there are a couple of reasons why your child may not be able to walk. Bone disease, or a tumor on her spine. We will be transferring you to Toronto Sick Kids for further testing.’ Little did I know at the time; Toronto Sick Kids would become our second home. When we arrived at Toronto Sick Kids, they wanted to take things slow. She still couldn’t walk, and we got told again that Milena could be constipated. Finally, they did an ultrasound on her abdomen.

It was April 20th when three doctors pulled us into a room. We were sitting across from them, our hearts felt like they were coming out of our chests. The words came out and hit us like bricks. ‘Your daughter has a mass, a tumor, coming from her left adrenal gland.’ We were numb. Every inch of my body was aching, sick, shocked. Milena was diagnosed with a cancer called Neuroblastoma. We finally knew why our daughter had been acting differently. The next few days were a blur. I have never felt so many different emotions at once. Anger was probably the most prominent. How could all of the doctors (at least 8) we had seen before have missed this? Why her? What did I do wrong?

Everything began to happen so fast. She needed to go through tons of testing, have so many needles, and was in unbearable pain. She was scared. We were all scared. How did our little girl get caught up in this mess? After her testing, she was officially diagnosed with Stage 4 High Risk Neuroblastoma that had metastasized to the bone marrow and bones. Everything she was experiencing in the past months made sense. We were told she would be in treatment for at least a year and a half. Chemotherapy, surgery, stem cell transplant, radiation and all of these things I knew nothing about.

Courtesy Angela Pronesti

Charles and I both had to learn so much about her treatments, medications and things about childhood cancer that no one ever should be forced to learn. Sleep is a word neither of us know anymore. Whether at home or in the hospital, we are always monitoring Milena’s vitals, changing her, timing her feeds through her feeding tube, and making sure she feels comfortable and isn’t in pain. With all the drugs she was receiving I wanted to monitor her as closely as possible. We were also raising a new born baby. Jayla was only three months old at the beginning of all of this. We just keep telling ourselves, ‘One day at a time’.

I don’t know how we would be dealing with all of this if we didn’t have Jayla. I feel like she is the glue that is holding us all together. She has spent most of the first year of her life living in a hospital. She is always smiling and is such a happy and loving baby. She has helped Milena be happy as well because Milena still gets to be a big sister. I remember that Milena would always need to make sure that Jayla had not toe jam! We would be sitting in our hospital room and she would say ‘Let me check Jayla’s toes!’. Jayla helps me to remember to smile and be strong. She is the light in all of this, she helps my whole family stay positive and never lose hope.

Courtesy Angela Pronesti

August 1st, 2018 came around, and this was the day we were going to get her tumor out of her. After four rounds of chemo, this was the next step. She had a world-famous pediatric surgeon and we couldn’t wait for this day. I walked into the surgery room holding my baby in my arms, tears streaming down my face. I couldn’t breathe and my heart was racing. I laid her on the surgical table looking around as everyone was dressed in blue jump suits, getting ready to operate on my little girl. I looked her in the eyes and told her that everything was going to be ok. I placed the mask for the anesthetic over her face and just like that, she was asleep. The doctors told us that the surgery would take about 6-10 hours depending on how difficult it would be to remove the tumor. We paced back and forth in the surgical waiting area with our whole support network. Both of our families where there, rooting for the little girl that we all love so much. About 6 hours into the procedure, our doctor came to talk to us. He told us that they were going to have to remove her left kidney in order to get the tumor out. He got a phone call as he was talking to us and stepped out of the room for a few minutes and when he came back, I just knew that something was wrong. He proceeded to tell us they were not going to be able to remove the tumor because it was wrapped around and invading her aorta vessel wall. It was too dangerous he said. We felt defeated and hopeless. This thing was going to have to remain in her body and we didn’t know what that meant. He said with the tumor still there, it was going to be harder to get rid of her cancer. We knew this news was a giant setback, but we just had to keep going and figure out the next step. Milena wasn’t recovering well from the surgery and about 48 hours after, they did an ultrasound at 4am and just like that she was headed back into the OR. She had what was called an interception, where her small intestine was going into her large intestine. They had to operate quickly as it could have caused serious problems for her. We were in the hospital for three long weeks after the surgeries until we got to go home.

We did the fifth round of chemo and along came September. She was to have new scans done, and this was going to tell us how she had been responding to treatment. Getting good news was all we were asking for. Instead, it was devastating. The 5 rounds of chemo Milena had completed did not work as well as they had hoped. What are the odds of Milena being classified as the 10% of patients who do not respond to frontline treatment? Another setback, but we kept saying to ourselves that we can do this, she can do this. She was put on a different type of Chemotherapy in combination with Immunotherapy. We were told 50% of patients responded to this treatment. Immunotherapy has lots of side effects like high fevers, trouble breathing, and the Chemotherapy can cause severe diarrhea so we knew this would be tough. After two rounds of this treatment, she had her scans done again. We finally had some good news, they told us that the treatment had started to work and got rid of one of the lesions on her right tibia as well as one of the lesions on her skull appeared to be smaller. Then she developed a very bad gut bacteria called C. Difficile. This caused her to be isolated and to lose three pounds, which was a lot considering she was already so small. She completed another 2 rounds of this treatment and all of a sudden it was almost Christmas. On December 21st she had more scans done, which brought us the news that this treatment is not working for her. Her cancer was progressing and getting worse. We could see it by just looking at her, the way she would move around, and she was experiencing more pain. We had no idea what our options for her were and what the next steps would be. We had a scheduled talk with the doctors on January 3rd. The holidays flew by and that day was getting closer.

Courtesy Angela Pronesti

Milena was not in a good place on New Year’s Day. She was experiencing headaches and a lot more pain than usual. So, on the morning of my 26th Birthday, January 2nd, 2019, we headed to the hospital a day early to see the doctors and try and understand what was happening. I will never forget that day. Our doctor told us that with her not responding to treatment, the chance of curing her was going to be impossible. It is one thing to be told that your child has cancer, it is a whole other thing to be told that your child has zero chance of surviving this battle. To have our hope and life ripped away. It felt like someone pulled out our hearts and drop kicked them across a field. We were told that there are still a couple of options for her, and these things will most likely just buy us more time with her.

We will not give up. We are not losing hope. We know that miracles happen, and we hope our baby gets one. We know there must be a way that we can figure this out and that we can get a hold of her disease and stable it. They did a CT scan on her head that day to see why she was having headaches. They found two new lesions that were putting pressure on her brain. She began the first of five radiation sessions the following day. Laying her down on the stretcher for radiation was another moment that I felt my heart breaking into a million pieces. We have not left the hospital yet as she has been in unbearable pain that has been very hard to control.

Our next step at trying to fight this beast, is a clinical trial that she will be put on at the end of January or beginning of February. Milena has a gene mutation called the ALK gene which only 8% of neuroblastoma patients have. It is scary because they don’t know a whole lot about this drug, which is called Lorlatinib, and how to use it with children. So, we are scared. So scared. However, we have not lost hope. I believe that she will continue to fight this horrible disease. This story is not over, Milena’s story is not over yet. She will continue to be our warrior, our lion. I always knew that she was special.”

Courtesy Angela Pronesti

This story was submitted to Love What Matters by Angela Pronesti of Toronto, Canada. Submit your story here, and subscribe to our best love stories here.

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