Meet Noah, a 5 year old ALL warrior. Noah plans to attend the University of Tennessee when he grows up to learn how to be Spiderman. He loves jiu-jitsu, soccer and t-ball.
The following is a story told by Noah’s mother, Martha.
“On June 27th, 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, so we went to our pediatrician’s office and were placed on prednisone. Three days later, we went to the ER and were admitted for testing and observation. I asked the ER doctor if Noah could have some form of cancer and since all of Noah’s tests and labs came back normal, she “promised” me Noah did not have any type of cancer. Unbeknown to us, the steroids had falsified his labs. For the next four weeks, we were back and forth at 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, and he responded with, “Mommy, I am very sick. You have to help me.”
Finally, Noah’s second GI panel came back abnormal, showing that he had bacterial overgrowth. This led us to a GI specialist who ran blood work on baby Noah. The next day, July 24th, 2018, our GI specialist called and said all of Noah’s labs were abnormal. She said there was no way his labs could be this abnormal and that she thought the test was skewed. I asked her if he could have some form of cancer, and she said, “If these labs are correct, then I am very concerned for his health.” She sent us to the ER to be retested. Before I called my husband at work, I looked up every abnormal lab that she had mentioned. His platelets were at 9,000, his neutrophils were at zero, and his white and red blood cell count was low. Every abnormal lab I looked up said, “leukemia.”
That night, in the ER, as we waited for our results, we heard the doctor outside the door take a deep breath and say “ok” as he opened our door. Before he could even speak, we asked him if Noah had leukemia, and he said everything was pointing in that direction. He said it could still be a virus, but that a hematologist would be down to see us. Twenty minutes later, Dr. Spiller came into our room. We asked her what kind of leukemia Noah had, and she said it appeared he had Acute Lymphoblastic Leukemia. Everything was confirmed the next day, July 25th, at 3:00 pm.
We began grieving for the loss of our healthy child and began coping with now having a child with cancer. At first we were in shock and afraid, then we became sad, angry and anxious, and finally, we became numb and accepted the fact this was our new normal.
We never realized how hard our journey with leukemia would be. We were in shock to know our baby had leukemia and then devastated when he became high risk to relapse due to an elevated MRD on day 8. Noah had instant complications. From hypertension to tachycardia, to a pericardial effusion, and a staph infection in which his port was removed, and a PICC line was placed, everything was spiraling out of control. Noah even reacted to the plasma in the platelets which landed him in PICU. Noah’s journey was difficult from the beginning. He ended up losing 15% of his body weight on steroids and needed a feeding tube for three and a half months. He also developed severe neuropathy in which Noah was bedridden and could only move his eyes. He was unable to walk for two and a half months. At one point, he was the sickest child on the oncology floor and one of the hematologists called him the “mystery ALL child.” If it could happen, it was happening to Noah. Every day was a new crisis.
With a total of seventy-three nights spent at East Tennessee Children’s Hospital, 13 blood and platelet transfusions and one IVIG, four new ports, and multiple dangerous reactions to several chemos, we are still in remission and in the maintenance phase of treatment. We are now doing well and will finish chemo on 11/1/2021.
Although there have been many difficult days, we turned our negatives into a positive by creating the #NoahNation Foundation via the ACCO’s Founding Hope program. Being inpatient so much, we saw a need for medically adapted pajamas. Kids undergoing chemo needed special pajamas that have easy access to their ports, tubes, and drains. We saw kids fighting cancer in dress shirts because the button down tops allowed for this easy access and Noah was always fighting in a Pull-up.
As a result, “The #NoahNation Foundation” was formed to create warrior and warrior princess medically adapted pajamas. Pajamas are altered using Velcro’s, snaps, and plastic zippers so that children can fight cancer in comfort. These pajamas are metal-free so that the children can have tests done while in these pajamas. Our goal is to bring dignity and comfort to all cancer kids undergoing treatment. As of today, over 400 pairs of medically adapted pajamas have been gifted to children battling cancer.”
The #NoahNation Foundation is one of ACCO’s Founding Hopes who work to help serve their community by providing pajamas adapted for kids with cancer. Follow Noah’s story on Facebook @SavingBabyNoahfromBCellALL
Learn more about ALL: https://www.acco.org/blog/about-childhood-leukemia-detection-and-diagnosis-2/
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