Warrior Wednesday Spotlight - Noah Sileno
Imagine your child being diagnosed with cancer and going through 2 ½ years of chemotherapy treatments and finally ringing the bell, to only be told less than a year later your child has cancer again. This is exactly what happened to Noah's parents.
Noah was originally diagnosed with High-Risk B-Cell Lymphoblastic Leukemia in 2018 at the age of 3 ½ years old and then again at the age of 6.
In early 2018 Noah was just like most little boys, he was into Spiderman, baseball and playing with his 4 older siblings, but that quickly changed by mid July. Noah started complaining of leg pain, he started falling down and not wanting to walk which in turn caused a lot of bruising over his body. Not long after, the symptoms progressed into fevers, fatigue, distended abdomen and labored breathing. Noah's parents were back and forth to doctors for four weeks before Noah was officially diagnosed with high risk B-Cell Lymphoblastic Leukemia.
With Noah's 1st diagnoses, Noah received a chemotherapy called Vincristine which caused toxicity and caused Noah to completely stop walking and sitting up and at one point, he could not hold his head up so his mother had to carry her 3 ½ year old son like a newborn baby. Things were so severe about three weeks into his journey, his parents thought they were going to bury their child instead of saving him, they truly didn't think that Noah would make it to his 4th birthday. Noah ended up having severe nephropathy, hypertension, tachycardia, a pericardial effusion, was in PICU for several days, and required a feeding tube for 3 ½ months due to Noah losing 15% of his body weight while on steroids. Due to Anaphylactic shock, Noah was unable to complete two of his chemotherapies and had to cut his Vincristine chemo and steroids into smaller doses. Noah and his parents were inpatient a total of 74 days during this phase of Noah's treatment.
After a long and grueling 830 days of treatments Noah finished and rang the bell in November of 2020 signifying that Noah was done with treatments and cancer free. When Noah finished with the first cancer diagnosis, he still needed Occupational Therapy and Physical Therapy, he required orthotics (leg braces). Noah and his family were finally able to get a taste of “normal life” again. Noah's mom Martha said that “Noah missed preschool during his 1st diagnosis and was very excited to start Kindergarten. They were enjoying time together as a family again and Noah even learned how to swim over that summer, which he absolutely loved.
In October of 2021, Noah slept through his brother’s football game which was very unusual. Two weeks prior at Noah's routine lab appointment Noah's labs were a little abnormal, but with Noah just getting over a stomach virus it wouldn't be usual for his labs to be a bit abnormal. Noah's mom Martha said that “Noah fell four times on the following Sunday and saw petechiae on his ankles.” The next day, Noah's parents had labs drawn at the pediatrician's office where his labs were even more abnormal, but once again, it was thought to be from a viral infection. Since Noah was struggling to walk, his parents pushed for an x-ray to be taken at the hospital which showed lucent bands. Lucent Bands can be seen with a diagnosis of leukemia. The Next day Noah had a bone marrow aspiration and within two days it was confirmed Noah had relapsed.
During Noah's second time through treatment, he stopped walking and developed a double lung infection. He continued to have hypertension and tachycardia from the treatments and is now having to see a Nephrologist. Noah started on a clinical trial that used not only chemotherapy and steroids, but also immunotherapy but was taken off of the trial before the third round of Blina. Noah's mom Martha said “with this second bout of cancer the hardest thing to accept is we did everything right the first time and the cancer still came back. Noah is older now and asks if he is going to die.” With both cancer diagnosis's Noah and his family have lost several friends to cancer which has been very difficult emotionally. Through this second diagnosis Noah had to do a total of three rounds of Blina which is an immunotherapy he carried in a backpack 24/7 for 28 days. He is also on 8 different chemotherapies at different times, goes to clinic for labs, has had to get many blood transfusions and lumbar punctures but through it all Noah has a very funny and positive personality. Martha says “Noah loves hard and is extremely empathetic. He loves to make everyone laugh even when he feels bad. He befriends all the cancer kids at the clinic and likes to look after the younger cancer kids.” Noah is scheduled to finish his treatments this October and with the hopes of staying cancer free!
Life truly never goes back to the way it was before cancer. Noah struggles with nephropathy and at times has to use a wheelchair for distance and on days he is having a hard time but the good news is Noah just recently graduated from physical Therapy and Occupational Therapy. Noah ended up missing his whole year of 1st grade and continues to work hard on catching up with schoolwork.
Martha says “Our life is divided up between before Noah got sick and after Noah got sick. Our old life is forever over. Noah has missed out on being a child and so have his siblings.” Knowing how hard this chapter of life has been on the whole Sileno family Campaign One At A Time has stepped in to help raise funds to send the family on a DREAM trip to Hawaii in 2024 to celebrate Noah being done with his treatments and cancer free. Noah dreams of spending time on the beautiful beaches of Hawaii and of course swimming with dolphins. Martha said “Campaign One At A Time has given Noah and our family something positive to think about and look forward to. Planning and thinking of this trip has been a great distraction from cancer.”
When we asked Noah's mom Martha what would you like others to know about Noah's journey she said “Noah is more than his cancer diagnosis, he is still a regular little boy who wants to be treated like a regular little boy.” Martha also said “as a parent, if you feel like something is wrong, keep having your child seen by different doctors until someone listens to you.”
If you would like to follow Noah’s journey you can find him on Facebook at - saving baby noah from b cell all - Search Results | Facebook
Written by Tracy Croxen