In October of 2005, our 2 ½ year old son, Elijah, became extremely ill. He became fussy which is unusual for him. He is truly the sweetest little guy! And he would say "hurt" and have this sick look on his face, but we were not able to identify the problem. Around this time, Elijah fell down our steps, but didn't get hurt. After his fall however, he seemed to be in continuous pain.
We took Elijah to the ER twice, and they didn't find anything. He ran a continuous fever and began to look anemic. He was then thought to have a bone infection and was put on continuous antibiotics. He only got worse. He stopped playing and running around. Running is one of his favorite things to do. It broke our hearts because he would say, "I can't run, mommy. I can't do it". Eventually he was even unable to walk. Elijah's pain level was so bad that he would just lay and cry. He wouldn't even let me hold him. The Dr. told us to bring him back to CHP because there was obviously something else going on.
In November Elijah was admitted to Children's Hospital of Pittsburgh where he 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 Philidelphia the recovery rate is around 54%. Neuroblastoma is a difficult cancer to diagnose. It is also a cancer that requires a more intense treatment protocal. Elijah is 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. Elijah spent six weeks going through 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. The other is through stomach pain. Elijah had been in so much pain because the cancer had metastasized throughout his bone marrow. Normally pain goes away in about a week after first round of chemo. Elijah's pain did not go away until after his second round of chemo.
Fortunately they were able to fully remove the primary tumor by removing Elijah's left adrenal gland.
We have since transferred Elijah's care to Children's Hospital of Philidelphia and under the incredible care of Dr. Stephen Grupp. Since then, Elijah has completed his last four rounds of chemo, T-cell collection, and stem cell collection. After his third round of chemo Elijah began walking, and after his fourth round he was able to start running! He is sooooo happy about that! He now says, "I can run weally fast! Watch how fast I can do it!"
Currently, Elijah is going through his pre-transplant testing, and we are preparing our home, making it safe for him to come home. Elijah will be going for the first of two autologous bone marrow transplants on April 18th. He will be in the hospital for 4-6 weeks for each one with a three week break in between.
This has definitely been quite a journey for our family, but the Lord has been faithful to give us the strength we need for each day, just as His word promises. Elijah
and mom are away from home a lot of the time, so our daughter is having a rough time, but she is doing her best to work through it. Elijah has been in "isolation" since December and it will be at least another 5-8 months before he can really be around all his little cousins and friends. His immune system needs to recover from his lengthy treatment.
He is a trooper though! He will wake up many mornings saying, "I'm getting better, mom!" I have to give him painful shots every day, and it is hard because he says, "no hurt me mom!" Elijah also undergoes painful dressing changes on his Medcomp line once a week because his skin reacts to the bandages. It tears my husband and me up to hear him scream and shake because the alcohol burns his skin so bad. Yet Elijah tells his sister, "I have to do it, Abby, I have to do it."
Elijah even passes out Sour Patch Kids to the staff at the hospital and tells them, "It make you feel all betters!" He is just so loving!
|
|
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:
|
|
