Daniele and her twin sister Patricia were born very early at 26 weeks. Daniele weighed 2.3lbs and her sister 1.7lbs. Patricia gained her angel wings 2 days after birth. Daniele was our little fighter!
Daniele spent the next 3 months in the NICU on and off a ventilator for the first month. There were many ups and downs during this time. Finally on January 16, 2007 (her actual due date) we were able to take her home along with oxygen tanks and heart monitors. But our Nellie was home nonetheless!
Daniele had follow up appointments every few weeks and a home care nurse every other day. As time passed we started to notice that Daniele’s hand were never opened and her head control was poor. At her 3 month visit we were told she has Cerebral Palsy but to what extent they could not tell at this point.
Our next step was to start intense therapy which she’s been going through ever since. We were making progress, slower than we’d hoped, but any positive progress is a milestone for us. At the age of 3 Daniele started preschool and she absolutely loved it! We feel that being around the other children really brought out her personality and made her the outgoing girl she is today.
Everything was going along well until the start of Kindergarten. Knowing that Daniele loved school so much we thought we had this in the bag, but unfortunately things did not go as planed. Daniele was not herself. We thought maybe it was the adjustment to the a new classroom, but it was not. In October she started having severe stomach problems. We made several trips to the Doctor and ER, nothing helped. Finally we begged Dr. Gaebler, her physiatrist, to see her. She was concerned although thought it was related to the CP affecting her digestive system. Then on Daniele’s 6th Birthday party we got a call from Dr. Gaebler asking us to take Daniele to the ER to be sure it wasn’t more serious, and we did
It was then that Daniele was diagnosed with Stage 4 liver cancer (hyptomblastoma) that had spread to her right lung. We were devastated! How could this happen to our sweet baby girl that had already been through so much in her few years on this earth?
We started a new journey, intense chemo program that was administered at home weekly with a big dose administered in the hospital every 3 week. During this time we spent many days and nights in the hospital due to fevers. Daniele never missed a dose and she kept on fighting. Once the chemo was finished she had a liver resection to remove 3/4 of her liver as a precaution in case there were any remaining tumors.
Finally, 9 months later, we were done with all treatment. Daniele was followed closely for another two years, which meant numerous tests, poking, prodding and being put under. Then finally as of January 2018 she was being called a cancer SURVIVOR at the young age of 10!
You would think this would be the end of the roller coast, this poor girl has been put through the ringer! In April 2017 Daniele broke her femur while doing home therapy exercises. This was a major setback, costing her 6 months to heal and be off of therapy. After her successful healing therapy resumed, it was like starting all over again.
In April of 2018 Daniele was having hip pain, and we learned she would need double hip surgery, and a surgery to lengthen her tendons. After a month in the rehab hospital Daniele was release to being therapy again. Unfortunately as time went on pain returned in her right hip and it was so excruciating therapy was stopped and she often could not attend school. It got to the point she could no longer stand. An MRI was ordered and confirmed Daniele had blood loss in the femur due to the plates and screws used during her last surgery. Another surgery was completed to remove the plates and screws, and replace with wires drilled into the bones. We won’t know if this surgery was successful until Daniele is fully healed, and her next step will be a full hip replacement, which is inevitable given her young age and continued growth.
Today Daniele is in good shape, she is in therapy 3 days a week, where she misses school, although she does receive home school on those days. Daniele loves school making her a very happy girl despite all she continues to endure.