In October of 2005 our 2 ½ year old son, Elijah, became extremely ill. The first signs we noticed were fussiness and an inability to sit for any length of time without getting very irritable. Both unusual for our little guy—he is truly the sweetest! He began saying “hurt” and have a sick look on his face, but we were not able to identify the problem. Then he began waking up crying throughout the night which was also very unusual. Around this time, Elijah fell down our steps, but did not get hurt. After his fall however, his symptoms became much worse.
We had taken Elijah to our local ER twice over that weekend, and they didn’t find anything. We then went to our pediatrician with our concerns and he referred us to an orthopedic specialist. When the doctor compared the ER’s x-rays to the new ones (they were four days apart) he saw shadowing on the bone of his left leg. We were sent to Children’s Hospital of Pittsburgh to be treated for a bone infection, and Elijah was put on continuous intravenous antibiotics.
He then began to run a continuous on and off fever and began to look extremely anemic. He only got worse. He stopped playing and running around. Running was one of his favorite things to do. It broke our hearts to hear him say, “I can’t run, mommy. I can’t do it.” Very quickly he was unable to walk altogether. On what would be our last evening home for two solid months, Elijah’s pain level was so severe that he just laid in his crib moaning. I wanted to hold and comfort him so badly, but he wouldn’t let any of us even touch him. The (world-renowned) infectious disease specialist, Dr. Wald, whose care Elijah was under, told me to bring him in immediately as there was obviously something more serious going on.
After about two weeks of horrific testing, Elijah was later diagnosed with Neuroblastoma—a childhood cancer that starts in the cells that come from the sympathetic nervous system. Neuroblastoma is a rare childhood cancer that is found in about 600 children per year in the United States. The national recovery rate is about 34%. At Children’s Hospital in Philadelphia the recovery rate is around 54%.
Neuroblastoma is a difficult cancer to diagnose. It is also a cancer that requires one of the most intense treatment protocols. Elijah was a part of CHP-667: a pilot study of tandem high dose chemotherapy with stem cell rescue and t-cell augmentation in children with high risk Neuroblastoma.
Dr. Wald followed Elijah’s case even after his care was transferred to oncology. She was so kind, compassionate and caring. We can not thank her enough for the crucial role she played in Elijah’s diagnosis. I will never forget how gently she broke the news to me after Elijah had his first MIBG scan. This, in and of itself, was the beginning of the many loving interventions and amazing miracles the Lord performed in our family throughout this long journey. For the very next morning, one of the oncologists came into Elijah’s room at 7am, loudly pulled up a chair, quickly uttered the words that would have been even more devastating than they were the evening before that our son had Neuroblastoma, which meant he had a 34% chance of living. He didn’t even have the respect or compassion to wait for my husband to be present. I can’t imagine what that moment would have done to me if Dr. Wald had not so gently given me the news the night before. We serve a most loving Heavenly Father!
Elijah spent the next six weeks going through more testing, recovering from surgery and receiving his first round of chemo. We found out that one of the ways Neuroblastoma is found is through a fall just like the one he had. The other is through stomach pain. Elijah had been is so much pain because the cancer had metastasized throughout his bone marrow. Normally the pain goes away in about one week after the first round of chemo. Elijah’s pain did not go away until after his second round of chemo (five weeks later!). Fortunately, doctors were able to fully remove the primary tumor by removing Elijah’s left adrenal gland.
After his initial round of chemo we transferred Elijah’s care to Children’s Hospital of Philadelphia under the incredible care of Dr. Stephen Grupp. Since then, Elijah has completed four more rounds of chemo, T-cell collection and stem cell collection, pre-transplant testing, hundreds of shots, painful bandage changes, two autologous bone marrow transplants, a feeding tube and many inpatient stays in between. Not to mention Elijah being life-flighted and his stay in the pediatric intensive care unit.
Elijah and mom lived away from home for almost a year. Elijah was in “isolation” for almost two years because of the effects the treatment had on his immune system. And Abby (big sister) had a very difficult time not having mom and Elijah at home, but did her best to work through it. This has definitely been the journey of a lifetime for our family, but the Lord has been faithful to give us the strength we needed for each day, just as His word promises.
Today, two years post transplant, Elijah is cancer-free! We give all the glory and honor to our Heavenly Father! I want to share with you what Elijah said to me just a few weeks ago before he went to bed, “Whew, mom, I thought those shots and medicine in my tubies was going to kill me.” I told him, “I know honey, but Jesus made you so very brave and strong.” He asked, “Am I stronger than a bear?” I replied, “You are way stronger than a bear.” He then asked, “Am I stronger than a bull?” And I answered, “Way stronger than a bull!”
Elijah’s only side effects are high-frequency hearing loss and thyroid damage. All fixable! What a testimony he has!!! We praise the Lord!
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All proceeds will be directly donated to the Ketley's to help alleviate financial strains.
Monetary donations can be made out to:
Elijah Ketley Cancer Fund
Health Care First Credit Union
194 Donald Lane
Johnstown, PA 15904
Donations can also be made using "PayPal" and your credit card by clicking the PayPal logo below:
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