When their young son Noah was diagnosed with high-risk B cell Acute Lymphoblastic Leukemia (ALL) at the tender age of three-and-a-half, Knoxville, TN residents Martha Sileno and her husband Michael knew their lives would become quite different. The couple immediately began juggling their jobs—Martha is a sixth-grade math teacher and Michael is a Production Manager of Flowers Foods of Knoxville—with the constant demands of caring for not only their childhood cancer patient but for Noah’s four siblings as well. Throughout Noah’s treatments at East Tennessee Children’s Hospital in Knoxville, the Sileno family has appreciated the positive effects whenever Noah receives a toy from the Treasure Chest. POTCF Founder and CEO Colleen Kisel recently interviewed Martha to gain insight into the family’s experience and was impressed with the remarkable courage they have shown in the face of adversity during what is now Noah’s second battle with cancer.

POTCF: Can you tell me about the time Noah was diagnosed? 

Martha: On June 27, 2018, our three-and-a-half-year-old son Noah began falling and complaining of pain in his left leg. He also was having severe stomach pain and labored breathing. Three days later, he went to the ER and was admitted for testing and observation. All of his tests and labs came back normal because the steroids he was on falsified his labs. For the next four weeks, we went back and forth to different doctors trying to figure out why Noah continued to have difficulty walking, labored breathing, severe abdominal pain, intermittent fevers, nose bleeds and the need to sleep all the time. One Sunday afternoon, as Noah was once again with a low-grade fever and wanting to nap, I asked him what was wrong. He responded, “Mommy, I am very sick. You have to help me.”

On July 25, 2018, Noah was diagnosed with Acute Lymphoblastic Leukemia. For 830 days, he bravely fought cancer. He spent a total of 74 nights in the hospital throughout his first journey. Finally, on November 1, 2020, he was declared cancer-free. Unfortunately, 11 months later, he relapsed. 

Noah started a clinical trial that used Blina (immunotherapy) in between rounds of chemo. Noah struggled to walk and required a walker and a wheelchair. He was already in PT and OT, but now required orthotics (leg braces) on both legs. Noah is in the midst of treatments right now but will finish treatments on October 18, 2023.

POTCF: Can you tell me about the hospitalizations/clinic? 

Martha: Before COVID, the playrooms were open and the kids could spend time together and the parents could catch up. During COVID, things were very isolating. Now the clinic playroom has opened up, not the inpatient playroom, and the kids are back to playing together. 

The staff at our hospital tries very hard to make clinic and hospital stays as positive as possible. They gave Noah a field day at the clinic since he was missing his. They all know how much he loves Spiderman and they keep up with his interests in sports. When he is inpatient, the staff will spend time playing games and cards with him. They make him feel very special and loved. 

POTCF: What is the worst part of Noah’s treatment? 

Martha: The worst part is having to listen to my child beg me to help him as I help to hold him down. Noah has gone through 8 central lines (four ports, two PICC lines, two broviacs). Noah had a huge fear of being accessed with the ports. He would scream and cry and make himself sick. He has done so much better with the broviacs.

POTCF: What is the best part, if there is a good part, of the clinic/hospital?

Martha: The nurses, doctors and staff really love my child and try so hard to provide for not only his medical needs, but his emotional needs, too.  We have also made so many cancer friends along the way, so we never feel alone.

POTCF: Can you tell me about the Treasure Chest at the hospital?

Martha: Our hematology/oncology floor has an outer space theme and the Treasure Chest matches that. The Treasure Chest is located near the nurses’ station where it is easy for all kids to see. The toys are of high quality and they offer such a great selection. Noah had to pull out every toy and changed his mind several times before he made a decision. He LOVES the Treasure Chest.  

POTCF: Did knowing Noah would receive a toy or gift card help the hospital/clinic experience?

Martha: Yes, walking long distances is hard for Noah, but he was motivated by the Treasure Chest to walk 10 laps twice during our last hospital stay. 

POTCF: Did your relationship with friends and family change? 

Martha: Sadly, yes. When he got sick the first time, we lost so many friends and family. Childhood cancer is taboo and hurts, so people walked away when they did not know what else to do. I was very hurt the first time he got sick, but the second time, we have not lost anyone because those who stood by us the first time are standing by us the second time.  

POTCF: How did Noah’s siblings handle his cancer diagnosis and the aftermath? 

Martha: I pray I never have to tell my kids Noah has relapsed again. The first time Noah got sick, they were all so young and innocent to it all, they did not completely understand. This time, already seeing how hard things can be and going through this before, the day we sat them all on the couch and told them Noah had relapsed, they all grabbed each other and were screaming and crying. I crushed my children having to tell them his cancer was back. It was one of the worst experiences we have had in the last four years of dealing with cancer.

POTCF: Someone told me (Colleen) that my son’s cancer treatment would change me for the better. Has this changed you in any way? 

Martha: I want to believe the positives outweigh the negatives. I learned to say “No” at work and with other things, whereas before I was always the “Yes” person. I know what is important and what isn’t. Things I used to get upset about no longer bother me. Childhood cancer has changed me and this relapse has changed me once again. There are so many positives, but I also live with the fact I know I may lose my son and that is a thought and a feeling that haunts me daily. There are not enough positives in the world that can replace that fear and heartbreak.

POTCF: What would you say to a family who just learned their son or daughter had been diagnosed with cancer? 

Martha: There is always hope. Make a decision and never look back. Accept help and put pride aside. Take it five minutes at a time. Be prepared to lose people you thought would be there for you. You are your child’s biggest advocate. Don't worry about whose toes you may step on. Get second opinions if you think you need them.

Be prepared for people to offer too much advice about your child’s cancer and your situation. I have a long list of somewhat inappropriate bits of advice I’ve received, but I try not to let that affect me. Finally, do try to connect with other cancer families. No one understands your situation like another family going through childhood cancer.

POTCF: Do you have any comments for the Treasure Chest Foundation’s contributors? Please elaborate on the importance of their continued contributions.

Martha: Thank you from the bottom of my heart for giving my son a reason to smile. By continuing to support the Treasure Chest Foundation, you are helping to encourage cancer kids to do hard things by having something tangible to look forward to when the hard work is over. The Treasure Chest Foundation contributors are the reason cancer kids’ tears are dried and comfort is provided. Thank you for your support and donations. 

POTCF: Please share any additional comments about the Treasure Chest Foundation, perhaps a personal story.

Martha: Noah had just gotten out of the hospital after an eight-day stay when he was invited to cut the ribbon for the new Treasure Chest that was delivered to our hospital. He had been septic from a central line infection, had pneumonia, was neutropenic (no immune system) and more. Getting to cut the ribbon and pick out special toys was the first taste of childhood he had had in weeks. Thank you so much for making my cancer baby smile and feel so special.