Skylar Ann Migliaccio was born on June 1st, 2014. She was born at the Riverview Medical Center in Red Bank, New Jersey, where her brother Luca was also born. Skylar was the cutest, but all parents think their babies are the cutest. In Skylar’s early months she had some issues gaining weight at a normal pace, and we could not find a formula she could keep down. Finally, everything evened out after a few months. We used Similac Sensitive Stomach. After that we made sure she was fed! After Skylar’s slow start, she was 100% in all her growth charts for the next four years, we kept thinking she would be a professional basketball player. A few spills, falls, cuts, and bruises over the first four years just like any other kid.
In the months of September and October of 2017 the whole family started noticing Skylar’s walking was not advancing at all and maybe even digressing. We took her to her pediatrician, and she said she was a little flatfooted and overweight and she should grow out of it. We asked about Physical Therapy and she also said it wasn’t necessary. A few more months passed, and we took her to the podiatrist in February of 2018. Now at this point Skylar’s walking had slowed down and she had to start holding onto things around her to walk or stay up. Things she was doing at 1 and 2. Skylar is at the podiatrist and he does a couple of tests. Measured her foot and her arch and he said they were both fine. The next step in the process is to get an x-ray, and we're so nervous, we're finally going to find out what’s wrong! He says her feet are completely normal. We were flabbergasted. So as the doctor is talking about what’s been going on with Skylar, we're telling him everything and he said, “It looks like her GAIT is off''. We're confused, what’s a gait? And he basically explained it as the process and steps a baby to a toddler to a kid learns to walk. So puzzled again, we're thinking - guess it’s something to do with her muscles?
Skylar went back to her pediatrician with the updated info and this time her doctor said she should see a neurologist. Scary, but we were getting somewhere. Appointment took a month to get and finally when it came, the nerves built back up. The day of her neurology appointment, we learn that Skylar needs a CT Scan. We were so thrown back, it's something you don’t want to hear as a parent. How can a walking problem involve a CT scan, generally used for brain injuries. Also the doctor said it could be Muscular Dystrophy or leukodystrophy. This was very scary to hear. Unable to help your daughter and relying on someone else to figure out what's wrong. After the doctor said this information, she also recommended we start Skylar at Physical Therapy. After a huge mix up with the insurance company we had finally found a PT that works with kids within our plan. By this time, it’s the end of April and Skylar is starting up her PT.
At this point Skylar’s walking was so bad. She could not walk up or down the stairs anymore, she had to hold on to things all the time to walk, and even would crawl around instead of getting up and walking to her toys or her doggy Peri. It was scary to see obviously and I grew more and more worrisome. At this point we knew we couldn’t wait till the MRI scheduled for the first week in July. We called Children’s Hospital of Philadelphia (CHOP) and they had an opening for June 14th. So, it’s just after her birthday and it’s time for bed one night at Skylar's father's house. He is in the kitchen waiting for Skylar to come in from the living room. She is doing her normal thing holding on to the counters making her way. She stops and looks at her dad with teary eyes and says, “I can’t feel my legs daddy”. To say the least, this was alarming and horrifying to hear as parents. We are pushing this girl to walk because it’s what we thought she needed. Let alone she could not even feel her legs and God only knows what else she was feeling and could not describe to us. We unfortunately knew something was definitely wrong at this point and not just a PT thing.
It was June 14th, 2018 the day of the CT scan. We had to report to the Berger Center at CHOP. We are waiting and signing in for about 45 min or so, just walking around killing time. This place was amazing and had a lot of cool things for the kids to do. Luca was with us, so he had a blast and was able to stay occupied through all of this. A Nurse from the back comes out and informs us that there was a shutdown of all CT scanners and they would be about four hours to reboot. We ultimately made the decision to stay and wait. The nurses are all setting up Skylar for her CT scan and we remember her getting the anesthesia for the first time. All the nurses were making her laugh and she had her “Big Guy” a stuffed Sully doll from the movie Monsters Inc. It was very scary leaving her in that room. It was an hour and a half when it was only supposed to be an hour and the nurse finally came out. She brings us to an empty hospital room to the doctor. When Dr. Storm walked in, he was genuinely nice. He was having trouble logging into the computer in the room to show us the pictures of her scan. Finally, he cannot get it working and just tells us, Skylar has a brain tumor in the lower part of her brain and has tremendous pressure in her brain as well. Dr. Storm explains to us they are now doing a full scan of her body to check any other areas. Which turned out to show tumor spots all down her spine as well. The news shakes us to our cores and the tears are coming and we cannot stop sobbing. He continued to explain that he will be performing emergency surgery on her in the morning. He said she does not need it tonight because she has been living with it for some time now. He continued with questions about Skylar; did you notice any weird ticks lately, headaches, vomiting, eye twitching? No, of course not, I hadn’t noticed any of those things and she was always so happy, so she never complained of a headache, that I know of. He continues telling us that he will go in and be able to get as much of the tumor out as he can, and the rest would have to be done via another route. He said that this surgery will be a long road to recovery having to learn how to walk again and possible other side effects. Still in awe and shock, we had to go back to the waiting room and tell Skylar's brother and Oma. It was not easy telling them what was going on, but we did. Skylar was checked into CHOP as an overnight patient. We never thought in a million years that she would not be coming home again. The day of the surgery was hard. No sleep, scared, upset, worried. Skylar's surgery was sixteen hours long. Dr. Storm had successfully removed what he could. The first couple days of Skylar's surgery, her mother stayed with her at CHOP while her father and stepmother travels back and forth. It would be about two weeks before we would find out the results of the biopsy. Two long weeks with lots of decisions. Skylar was slowly getting better and learning her mechanics very quickly, in our eyes. When the meeting happened, we finally found out it was cancer. It was again like fifty knives going into your heart. Horrible news followed by talks of chemotherapy and rehabilitation. So, we started the process, we need Skylar to heal enough from her surgery before we start the chemo. Unfortunately, Skylar was having so much trouble with the pressure in her head and the valves, called shunts were malfunctioning due to various things. This continued on, and Skylar endured about four or five surgeries in the first month and half. Finally, able to be strong enough to start chemo.
Skylar’s day would consist of the “rounds” in the morning anywhere between 6am-9pm and mixed in with those times would be her wipe down bath fresh everything on her bed. New gown, and breakfast time when she was eating. On a good day, it was Physical Therapy, Occupational Therapy, and Speech Therapy. She did not enjoy physical therapy too much but did enjoy game time during her sessions. All her therapies would usually end around 3 o'clock. In that time also we would get her to eat lunch, and we would read and play different games. After the 3 o'clock hour she would want to go on walks in her hot pink wheelchair. Go down to the area where we do art projects and borrow different toys for us to take back to her room. She does all these activities connected to 2 different poles each with 3 or more lines. Between liquids, chemo and medicine and the shunts on the other pole. After dinner it’s more stories or board games followed by either Frozen or Moana (Almost Exclusively), new clothes and a wipe down. On days when things are not good, we did our best to try and get her to do her therapies, but we couldn’t always get her to participate. We would want her to eat and she would not. She would have fevers and be vomiting. Her NG Tube would always come out and the nurses would have to put it back in, three times in a day on time. On the worst days, she got quiet and not happy like her usual self and we knew that this was not good. Back to the CT scan, more medicine to keep her calm and usually the news was a shunt malfunction and another surgery. Those days were hell, but I would never give them up being able to spend them with her, doing my best to help her.
The months went by, in and out of surgery, chemo plans, trying to get over to the Seashore House to start rehabilitation. Every time Skylar was close enough and strong enough to get there, her shunt would malfunction, or she would have something else wrong. After time with chemo, she had lost the hearing in her left ear. It was hard to stomach for all of us fighting this fight with her, but we had to keep moving forward. We took off the chemo that made her hearing go away. The end of October was when Skylar started having serious problems. Which landed her back in the PICU after her surgery (she went there after every surgery). For the first week she was good, bouncing back a little bit but not fully allowing us to leave the PICU then we had a scare with her breathing that started a whole slew of other things, for the worst. All of her vitals were low and the doctors highly recommended that they intubate her, she needed a breathing tube. We knew from past conversations that when that happens it’s hard to go back in the other direction. But it was one of those life decisions where you have to listen and hope for the best.
She was intubated for about 3 or 4 days then we were able to remove the tube. She did not talk much or want to eat or drink anymore. After another week her blood oxygen level fell again, and she had to be reintubated. It was the second week in November. She never got her tube out again. Her team of doctor’s explained that we had reached the point of no return. Skylar would never come off the ventilator, she would never be able to speak or feed herself again. The Skylar we knew and loved could never come back to us the way she used to be. We all spent the holidays with her as best we could.
In the first week of January, Skylar’s parents made the painful decision to let her pass on and not live with pain any longer. There is not a day that goes by that we do not question the decision we made for Skylar but seeing your child suffer for three months not being able to breathe on her own, speak, or even think for herself…. When is enough? Skylar passed away peacefully on January 16th, 2019 at exactly 6:00 pm in the arms of her mother and father with her close family in the room right next door.
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