In August of 2005, Elijah started experiencing pain in his right leg that seemed to coincide with a low-grade fever. After a few days, we were concerned and took him to the pediatrician. They told us it was most likely a virus and growing pains. A few more days passed and we noticed that his appetite had decreased. The pain in the leg seemed to come and go but ibuprofen subsided the pain, so we weren’t too concerned. After ten days, we began to think there was more to it than just a virus and growing pains. Finally on the fourth trip to the pediatrician, they ran some additional blood work and checked his ESR (Erythrocyte Sedimentation Rate). His ESR was 57 whereas a child of his age is normally below 20. That was one of the first signals to the doctors that something was wrong.
The doctors transferred us to Arkansas Children’s Hospital for a bone scan. The bone scan showed hot spots on his sternum, a few ribs, and on his right hip. That led the doctors to do a full body x-ray to check for any abnormal masses in his body. The x-ray was clean, and the radiologist told us that was a good sign. Next step was more blood work and a bone marrow aspiration to look for abnormal cells. The bone marrow aspiration showed tumor cells which indicated there was a tumor somewhere in Elijah’s body. But the doctors had to find the tumor. A CT scan showed a small tumor near the adrenal gland and some enlarged lymph nodes in the same area. Our doctor said that this was the most common place to find such a tumor when diagnosed with Neuroblastoma. Thankfully it was not in the brain or his chest.
Generally, by the time Neuroblastoma is diagnosed, there are multiple tumors that interfere with other major organs. So surgery was the only thing left for Elijah. The surgery took place on Tuesday August 16th, 2005. The surgery was going to be two-pronged, first, implant a port near the collarbone. It would go under the skin which would allow the medical staff to hook Elijah up to an I.V. This allowed for fewer needles as chemo and meds got administered. Secondly, the surgeons were going to perform a biopsy of the tumor area. But, since the mass was so small, the biopsy was bypassed. There was no reason to risk damaging major organs in the abdomen region and perhaps not have a big enough sample to test. The surgery was quick and went very well. Our doctor told us that one of the most positive aspects of our situation is that Elijah is starting out healthy and happy. Elijah has since undergone countless rounds of Chemotherapy at Arkansas Children’s Hospital and a stem cell transplant with his stem cells collected at the end of 2005.
Elijah has been a trooper in the hospital and has maintained his normal zest for life and exuberant personality. We prayed that the chemotherapy and his stem cell transplant would be successful and that Elijah can once again get back being a five-year-old boy….and free of cancer. Elijah was able to go to kindergarten and play soccer that year. On May 23, 2007 we found out that Elijah’s Neuroblastoma had returned. He endured more chemo, a second stem cell transplant, more radiation and another six months of Accutane. He has been on continuous treatment ever since. Elijah is quite the superhero and he beat cancer multiple times. We have faith that he can do it again. We appreciate all of your prayers and support more than you can ever know.
Most recently, on March 19th, 2015 Elijah had an MIBG and SPECT CT. Britt met with Dr. Merchant this morning and was able to conference me in via phone so I could be in on the conversation. From what she said, she is pleased with how the treatment went. The scan didn’t seem to show much change if any. The three tiny spots may be a bit more faint and a bit smaller – but It’s hard to determine. They are not larger, so she feels very comfortable calling the scans stable.
We are reminded that it’s a bit more challenging and takes a little longer to reach the tumor cells in the marrow and the bone than if Elijah’s disease was a solid tumor. I think we were just overly anxious to call this treatment a complete success. We aren’t saying that it won’t be a complete success. We’re just saying that we have to be a bit more patient, and the results are not going to be as immediate as we all had hoped. Everything else is trending in the right direction. She’s very hopeful that the T-cells are in there doing what they are supposed to do. His CRP peaked and dropped and then had another peak, which was very encouraging and hopefully indicative of T-cell activity. His LDH, which in neuroblastoma, can sometimes link with the growth of the tumor, has decreased which is also reassuring. His bone marrow was clean last time, and his urine HVA and VMA were within the normal range before treatment so we have no reason to think they won’t still be negative for the disease now.
Elijah and his family have been in and out of the doctors since 2005. After exhausting all resources here in Arkansas, it became evident that they would have to leave the state to get the professional help that Elijah needed. Philadelphia was the closest place for Elijah to receive the treatment that was needed to ensure that his Neuroblastoma did not overtake his body. There were many challenges for the Talley family to face as they made the trips back and forth to Philadelphia. In 2007, Elijah hosted a Lemonade Stand to help raise money for the foundation, little did they know just what kind of a relationship started that day. Over the last eight years, the Talley’s have had the assistance of Alex’s Lemonade Foundation. They have helped with travel expenses and have been there throughout the whole way. The Talley’s are very appreciative of the support both, financially and morally, that they have received. They continue to host Lemonade Stands for Alex’s and will be at our event on Saturday 4/4/15 at Cooks Landing to lend a helping hand. I believe they will be there around 10 am and will stay for an hour or so. If you would like to read more about Elijah, you can view his web page at www.prayforelijah.com
Kids that suffer from cancer have a high likelihood of relapsing or contracting another form of cancer. It is because of foundations like Alex’s Lemonade Stand Foundation that some of these children can beat the cancer. If not for the work of these foundations some would not be able to get the treatment they need. In order for that to happen we must all do our part and help these foundations. Whether it be Alex’s Lemonade Stand or whomever. We can not sit by idly, assuming that the next person will step up. When we don’t do our part, it is the kids that are bearing the burden. So please help these kids, because I can’t do it alone, and neither can they.
Remember if you don’t want to donate to my event for Alex’s Lemonade Stand Foundation, then find a charity that you like and donate there. Whether it be time, money, or whatever. All that matters is that we all do our part and help these kids. The kids are our future and we must provide for them. Thank you and god speed.
**If you would like to help Ken reach his donation goal of $10,000, you can donate at: http://www.alexslemonade.org/mypage/1121793. This is a link to Alex’s Lemonade Stand Foundation where Ken’s event is hosted. Alex’s Lemonade Stand Foundation is a 501 (c) 3 tax exempt non-profit.