Acts of Kindness
On July 29, 2021 our lives were turned upside down. What was just going to be a normal checkup for our 6-year-old turned into much worse.
Our daughter Rylee had recently gone on a trip to New Jersey to see family. When we got back, I had noticed excessive bruising all over Rylee’s legs. I made her a pediatrician appointment where they took blood. The results showed that Rylee had an elevated white blood count, and low platelets. The doctor was concerned because Rylee’s spleen seemed to be enlarged. Her pediatrician sent us to Levine Children’s Hospital in Charlotte right away.
When arriving at the hospital I didn’t know what to expect. We were told to go to the 11th floor and that’s where she had a bed waiting. Still unsure about what was going on, I looked at the sign for the 11th floor and noticed it said “Oncology and blood disorders”. I was terrified. When a doctor came in and told us that Rylee had Acute Lymphoblastic Leukemia we were in disbelief.
A month into treatment, Rylee was supposed to hit remission. When we found out that her bone marrow aspiration came back positive for Leukemia cells, we were distraught. Rylee was then moved to a high-risk category. After two more months of treatment, she had finally hit remission.
Even though Rylee was in remission this nightmare wasn’t over. For her type of cancer, she will be in active treatment for 2-3 years. The past year and a half have had many ups and downs. We spent many nights admitted into the hospital for infections, and viruses. The longest being 18 days.
Currently Rylee is doing very well, and we have an end of treatment date of December 6, 2023. Rylee is able to go to school, and also dance class. She has been so brave, and strong. Denise from Xander’s Acts of Kindness is such a good person. She is doing great things in her son’s name. Xander’s was able to send us to Great Wolf Lodge this past weekend. It was so nice to see my daughter laugh and play without a care in the world. Thank you so much Xander’s Acts of Kindness, and to anyone who has donated to help make this happen for our sweet girl.
Kaleigh was diagnosed at the age of 2 on June 1, 2011 with Philadelphia Chromosome Positive ALL, a rare form of Leukemia. She went through active treatment of chemotherapy, including inpatient and outpatient, for the next three years following her diagnosis. After completing all her rounds of chemotherapy Kaleigh was declared a survivor and was able to have her port removed at the age of 5. She went on to live life as a normal child.
Unfortunately, on Kaleigh’s 10th birthday she began to show signs of return of the Leukemia she had once beaten. Two days after her birthday she was diagnosed with Philadelphia Chromosome Positive CML yet again, another form of rare Leukemia which declared her as an official relapse patient.
Since her diagnosis, Kaleigh is now 14 and has been able to go back to her normal schedule and routines which include playing AAU Softball/Basketball as well as the ability to live with no restrictions. With the help of her doctors, new medications that she is able to take at home and organizations like Xander’s Act of Kindness who help children stay happy and healthy Kaleigh has been able to continue to be a survivor and inspiration to other children like her.
On December 23, 2021 I got a phone call. A phone call that changed everything. A phone call that every parent dreads getting. My youngest child of 3 years, Adriana Santos, was diagnosed with leukemia. I could not believe it; Adriana had always been a healthy baby girl! Although it hurt my soul that my baby had to go through this long and hard process, I knew it was for her own good.
We had our ups and downs but she fought, she kept pushing through, she’s such a warrior. We had faith that everything would soon get better and we prayed that she would become healthy again. After every rainstorm come a rainbow and every day I get with my daughter is a blessing.
I want to thank Xander’s Acts of Kindness for everything. You guys made Adriana’s dream come true and we were able to see that smile once again. You guys are so generous; thank you for doing this for my daughter and all those other children and family’s out there. God Bless you all!
It was in the spring of 2020 when our sweet, energetic Melody started to develop symptoms such as leg pain, weakness in her right leg, loss of function, loss of appetite, weight loss, and fatigue. She lost interest in everything except laying on the sofa, saying she's tired every day. Even after a few doctor's visits they were not able to figure out what was wrong with her. They provided us with X-ray images from her waist down at 2 doctor's visits and found nothing. It wasn't until February 2021, after an MRI, when we heard the devastating news that she has a spinal cord tumor from T9-L6, later diagnosed to be Anaplastic Ependymoma grade III.
At that moment our world was flipped upside down. She was admitted immediately to the Levine’s Children Hospital in Charlotte to undergo surgery. Unfortunately, the surgery wasn't successful with only 50% of the tumor safely removed. Not only that, she lost all functions from the waist down. We both took off work to stay with her until she recovered and dad was asked by his boss to resign from his job. After our long stay in the hospital, we traveled to Florida for radiation treatment during the middle of April 2021. She endured through so much pain and faced many struggles. She is definitely a warrior and as parents we are so proud of her!
After some time, she was able to get up on her own and could use the wall to walk until September 2022 when she had a relapse. Once again, our world was flipped upside down, an unimaginable pain and disappointment knowing she had to go back to first base. She has undergone another unsuccessful surgery and has lost all functions waist down. Once again, she endured through so much pain and faced many struggles. It has traumatized us as parents to see our baby girl in that stage.
A few months later after her recovery she was finally accepted into a clinical trial with Chemo in Georgia. It has been 2 months and the doctors are quite impressed with her progress. This journey was not easy for her and is still not, but she is fighting strong. With the help from foundations such as Xander's Act of Kindness, it has brought encouragement, excitement and a smile to her face!! And it allows us as parents to know that we are not alone. No words can express our appreciation. Thank you so much!
Melody's Act of Kindness room makeover included a new bunk bed, so she could always be near her sister, as well as all new bedding, including mattresses, and a bedroom paint refresh.
When we come together in love, and we allow ourselves to fully feel what it must be like for a parent to hear that their child has cancer; our hearts seek for ways to help. Here at Xander’s Act of Kindness Foundation we seek to be a salve for the suffering, a bright light on a dark day and above all a bit of kindness amidst the cruelty of cancer.
We are proud to introduce you to Xander’s Act of Kindness Foundation’s very first recipient, Eden.
In November of 2021 Eden’s parents noticed swelling on the right side of her face. Soon they noticed that her right eye was turning inward. Quickly Eden was admitted to Levine’s Children’s Hospital where a series of tests, that no parent wants to see their baby endure, revealed an egg size tumor embedded in her right jaw.
Further tests were conducted and the swell of fear that hovered over them came crashing down; Eden’s tumor was cancerous. The biopsy results showed she had an atypical Teratoid Rhabdoid which offered less than a 20% chance of surviving.
Eden, at just 8 months old began a grueling series of weekly chemotherapy infusions. In February of 2022 she underwent surgery to successfully remove the tumor.
Once she was well enough, they took her to Boston to receive proton radiation therapy followed by stem cell rescue.
In August of 2022 Eden’s scans came back clear, showing no evidence of the disease. Now it was time for Eden to laugh and play.
It gave us great pleasure in presenting Eden and her parents with a selection of toys from Hearthsong; which we’ve been told are bringing her joy and laughter every day.