Acts of Kindness
Charlie
Bobby and Candy Ward, and their three beautiful children, were living a happy life, until a golf ball sized knot under their one-year-old baby’s arm appeared in July 2020. Although initial bloodwork came back just fine, a week later a second round of bloodwork showed a spiked white blood cell count. Within the month, more bloodwork and a biopsy revealed Leukemia, sending Charlie straight to Levine Children’s Hospital.
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Charlie was admitted on August 10th, 2020, where he would spend the next month receiving extensive Chemotherapy during the tension and restrictions of COVID. The added stress of separating the family during this crisis was hard on Charlie’s brother and sister too. A month later, Charlie was able to come home between treatments, which was so important for the family to be together again. However, in addition to COVID sanitation, there was the additional worry that even the slightest exposure to a cold or germs could be extremely dangerous for Charlie.
Charlie has endured several setbacks and relapses that have required surgeries, a bone marrow transplant with his father as the donor, and a revolutionary new treatment called CAR-T Therapy, which used his own T-cells that were re-engineered to fight cancer before being re-infused back into his own body. After almost 4 months of being an in-patient, Charlie finally got to go home on April 18th, 2022.
Finally, Charlie was able to adjust to a more normal childhood, until, almost a year later, he developed a lump in his neck and jaw area. On March 8, 2023, a biopsy and PET scan confirmed that Charlie relapsed with new tumors in various places, including a 5 x 9 cm mass in his chest, prompting more chemotherapy and a trip to Children’s Hospital of Philadelphia to start a newer CAR-T trial. After all of that, a common cold coupled with a low white blood cell count let to another hospital stay.
Currently Charlie does not show signs of cancer but he still needs frequent platelet and blood transfusions as well as weekly immune supporting infusions and medications. He still receives 100% of his nutrition and oral medications through an NG tube and receives daily shots to boost his white blood cell and platelet production in his bone marrow.
Charlie is such a happy and growing child who loves to listen and sing along to praise and worship music. His favorite color is blue, he quotes the Angry Birds 2 movie almost line by line, likes Spiderman, PJ Mask, Transformers and running around being silly with his bubba (Connor), sissy (Isabella) and mommy and daddy. The family has been blessed with a great support network and met caring medical staff.
Despite the setbacks, Bobby and Candy are hopeful in God’s Plan and the care that Charlie is receiving.
Karina
My journey started on June 8th of 2023, the day I found out I had cancer. It all started because I kept on getting sick, I felt very tired, and very itchy. I also had a huge lump on my collarbone that I never noticed. June 16th, I got surgery to get my port inserted and on June 19th I got my very first chemotherapy.
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The first few months were extremely difficult; I had no motivation, and I had no happiness at all. With the help of my care team and family I was able to get through all of this and little did I know that everything does get better!
December 22nd of 2023 was my last chemotherapy and on January the 4th, 2024 I got my new puppy Lola, all thanks to Xander’s Acts of Kindness! 💕 I am filled with so much love and happiness! After the difficult time I went through I was finally able to experience happiness and was able to be free again since on January 29th of 2024 I was declared cancer free 🎉!
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Thank you so much Xander’s Acts of Kindness for my new puppy 💕 I am now happier than I even was before 🥰 Thank you for letting me believe that in the end everything does get better! 💕
Antonio
In early November, 2022, Antonio was a little boy with the flu. Just a month later, a persistent cough, headaches and vomiting began. Doctors thought it was lingering flu symptoms, but his pediatrician referred us to a neurologist. Hours later that same night his balance was off when he walked and we took him directly to Levine Children’s Hospital. The results of the tests they ran made me feel as if my world had ended. Our son had a large, aggressively growing mass in his brain.
They immediately brought Antonio into surgery to remove some of the mass and add a shunt to drain excess fluid from his brain, relieving the pressure. The first report identified an embryonal tumor, and chemotherapy was set up. In early January, Antonio had a g-tube and port placed and began with 2 rounds of chemo. When the complete pathology report showed that he had an Ependymoma grade 2 tumor, 33 rounds of radiation were added to the treatment plan.
Antonio endured 3 brain surgeries to remove the tumor from his brain stem, but he now has one eye that is always on the go, refusing to stay still. We have been told that he will need the shunt for the rest of his life. His next follow-up test is coming, and that brings both worry and hope.
This has been the most terrifying thing for me and our family. In the blink of an eye, your child goes from the flu to a cancerous brain tumor. We have made it so far by taking it one day at a time, being very grateful for our blessings, and relying on the kindness of other families, doctors and professionals at Levine and the Dane building. The teamwork and caring is amazing and truly a support and blessing.
Rylee
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
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.
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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.
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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.
Adriana
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.
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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!
Melody
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.
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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.
EDEN
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.
