Honored Kid

Elijah B.

Age 16
Elijah B. Kid Photo

Location

Freeport, NY, US

Diagnosis

Acute lymphoblastic leukemia (ALL)

Date of Diagnosis

May 2008

Status

Still in remission now has CVID. An auto immune dissorder that wreaks havoc on his health.

Treated At

Winthrop University Hospital

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My Story

Elijah was born on May 17th 2003 along with his twin brother Nathaniel Blades. Happiest day of our lives. Elijah Blades is now age 11yrs is an amazing boy. He loves animals, the planet, solar system, the ocean and it inhabitants, ancient mythology, Science and Social studies, bugs, drawing and reading. He loves to swim and play tennis and get him on a track and all you will see is dust. Elijah loves to run until his lungs will not let him go any further because of Asthma. Rewind to January 2008. Elijah is enjoying preschool and loves his teachers and his friends. He is happy to be with his brother in the same class. Then one night while watching TV with his twin brother Nathaniel. He stands up and lets out a blood curdling scream and is crying uncontrollably. We figured he'd banged his leg on the corner of the couch so we put ice on his knee and have him rest. He goes to bed and about 2 hours later he is sitting up screaming in pain. His Daddy rushes him to the ER and he gets an x-ray which shows nothing and some pain medicine. Elijah gets no sleep and is still in pain. His pediatrician calls over to a colleague of his at Winthrop and explains what we have told him. We go straight to the office of Dr. Gaffney pediatric orthopedic doctor. He does another x-ray and sees nothing and from the description he gets from Elijah writes it up as a possible bruised bone. Over the next couple of months Elijah is having good and bad days. Dr. Gaffney has him wearing a knee brace and when the pain got so bad he had prescribed some stronger pain medication. Elijah was not looking good but nothing was showing up in his blood or on x-rays. In March of 2008 Elijah and his brother are both sick with the flu. We were happy they got it at the same time until 2 weeks later Elijah is ill, having stomach pain and throwing up almost daily. Finally the flu is gone but Elijah is sleeping a lot, still having stomach pain and vomiting. As his mother, I knew something was wrong because the symptoms were becoming familiar. I would look at my son on the couch and see my baby brother who had passed away in 1975 from Leukemia. I was seeing him in my dreams every night and it had me frantic. My husband said I was just stressed and Elijah was not sick. The doctors were telling me nothing is wrong because the blood work was fine and the x-rays were good. The only person who seemed to think I had a valid reason for worry was the school nurse. She would tell me if you feel something is wrong then keep telling the doctors and don’t quit. She couldn’t tell me much more as she would have been in a whole lot of trouble with the school. Then one gorgeous sunny day on April 22nd Elijah said Mummy can we go to the playground. Of course we can I said. I packed a cooler with some of the boys’ favorite snacks, Clorox wipes and their baseball caps so they wouldn’t get sunburned. The boys were playing and Elijah came and sat with me as he was thirsty. When he was done he headed towards the slide. As I was putting away his drink in the cooler I heard a scream that made my stomach turn upside down. I saw my son hobbling towards me crying. His brother is looking frightened and confused because his brother didn’t fall down. Elijah tells me Mummy my bone just cracked. I laughed and rubbed his little leg and said you probably pulled a muscle. Come sit with mummy while I pack up our things and let’s go home. At home there is more pain so Dr. Gaffney is called. He laughed also at the bone just cracked. After all Elijah was 4 yrs old at this time. Dr. Gaffney advised me to bring him in the next afternoon which worked out good as Elijah had a school concert he didn’t want to miss. He had practiced his lines and was excited to perform. After the concert we headed to Dr. Gaffney’s office where he X-rayed Elijah again but this time he studied the films for a longer time than usual and as he turned to look at us we just knew it was bad. He had a different look on his face. He explained that Elijah’s right femur bone was fractured and the bone looked irregular. The fracture went up into Elijah’s hip. A wheelchair was ordered and Elijah was to stay off his leg at all cost. An MRI was ordered at LIJ for the next day. This MRI required Elijah to be sedated as it would be an hour long. An already scared little boy who had had nothing worse than the flu and only had his regular shots which he hated is now having an MRI which requires and IV to be placed in his little tiny arm and he is screaming because it hurts so bad. 24 hours later we received a call from Dr. Gaffney telling us to prepare Elijah for a stay at the hospital. We were all traumatized at this point. We were admitted to Winthrop University Hospital on May 4th 2008 for the beginning of a journey we would wish on no one. Elijah was stuck with needles, X-rays, MRI’S, Bone Aspirations etc. Our beautiful little boy cried and screamed through all the painful procedures and from being moved. He begged me, Mummy why are you letting them do this, Mummy please tell them to leave me alone. Beyond heartbroken doesn’t even touch how we felt. He screamed so much that they nicknamed him The Singer at the hospital. He could be heard before he was taken from the elevator. Then you would see him on the bed with his favorite frog blanket and pillow and of course hear his screams. He was so traumatized. All tests came back abnormal so now the top Pediatric Orthopedic surgeon was coming from NYU to Winthrop at the request of Dr. Gaffney to perform a bone biopsy. This was done at 1am in the morning. Due to the time we had been given permission for Elijah’s twin brother to stay at the hospital with us so we could both near Elijah. We all headed down to the surgical area and my husband suited up in his paper jump suit and after hugs and kisses from Nathaniel and I we watched them wheel my baby away with his daddy trying to calm him down while he screamed MUMMY, MUMMY , I want my Mummy. After the surgery was over my husband called me to come back to the surgical recovery area. I could hear my son screaming before I got off the elevator. He screamed at me that he hated me and why did I let them hurt him and that he loved me. It was awful. He was now in spiker cast. A hard cast from his little chest all the way down his right leg and down just up to his left knee. It had a bar in between. Elijah cried that it hurt for 2 days. They kept telling me that it was just because he wanted it off and he had to get used to it. Dr. Gaffney came to see Elijah and oh boy was he not happy when he saw the cast. He called one of the doctors that worked under him and requested they bring a saw. He made some room in the cast to try and make Elijah comfortable. It didnt help as the imside of the cast was digging into his little body. Also Elijah was being moved to another room. His own room and we were told that someone was coming to visit us the next morning. That morning was May 15th. The day I met Elijah’s oncologist Dr. Mark Weinblatt. I don’t remember what he said after about 5 minutes. I remember my husband shaking me and trying to get me off the floor. I had apparently slid down the wall to my knees after I had heard the words Elijah has cancer. He explained as much as he could and told us that Elijah was to have a spinal tap procedure that afternoon and his first chemotherapy treatment. Also once Elijah was asleep Dr. Gaffney removed that horrible old medieval cast and put Elijah in a fiber glass cast with plenty of room for Elijah’s stomach which we were told would expand due to heavy doses of steroids. It was again from his chest down to his right foot, left knee and had the bar in the middle. After trying to figure out how future spinal taps would be done they decided to cut a little window in the back of the cast. The piece was taped back and would be removable when spinals had to be done. So now with a diagnosis of ALL (Acute Lymphoblastic Lymphoma) Elijah is in his cast for 4 months and thankfully when it was removed his leg had healed perfectly. We did not know up until that point what the outcome with the leg would be. Permanent damage, or loss of the leg. Elijahs bone was soft like butter and could not be pinned. But we received the best news when that cast came off and an xray was done, Fully Healed. Elijah is now in a wheelchair as he cannot walk as yet. He had months of physical therapy to help him strengthen both legs and learn to walk again.  He starts treatment at Winthrop University hospitals Cancer Center for kids. In the beginning it was very traumatic for Elijah and the family. Thankfully though after having a medi port placed in his chest during his hospital stay needle access with the help of magic cream (lidocaine) was faster and not as painful. Elijah didn’t trust anyone that looked like a nurse or doctor. Thank goodness for the child life therapist Nicole and Glen and Dr. Weinblatt great sense of humor.  They earned Elijah’s trust and helped him eventually trust the doctors or nurses to touch him. He would endure blood draws, spinal taps, Steroids that would alter his personality while on them and increase his appetite and food cravings blood transfusions, platelet transfusion, IV antibiotics, long hospital stays over the next 3 years of his life. Some hospital visits were scary as he was so ill that we didn’t know if we would be coming home with our Beautiful boy. The doctors would never lie and would tell us how close we were some hospital stays to losing our Beautiful angel. Well, against all odds 3 years and a few months later we were given the best news we had heard in years. NED- no evidence of disease. This was in November of 2011. Tears of joy were shed, hugs were given and we got our new instructions for giving medication until he was off it completely. We were beyond overjoyed. We thought life was going to be like it was before. Then in January of 2012 we had another scare when Elijah couldn’t walk on his left leg. After new X-rays we were told Elijah had fluid in his left hip. We had to go back to the Cancer center. We were told that as a precaution and because of the very strange way Elijah’s cancer had presented before that we would not be able to have his port removed that April. Elijah had issues with the hip and pain but thankfully it never became cancerous. The port remained in until August of 2013. Elijah has remained cancer free but due to the high doses of chemo he now suffers with asthma which interferes with his sports activities, joint pain, foot cramping and severe environmental allergies both indoor and outdoor. He is at the allergist and pulmonary doctor offices every month. He now needs an inhaler morning and night and takes a host of pills and uses nasal sprays. We have tried weaning him off the medications but he becomes ill. So for now Elijah deals with it all and will say he hates having all these new issues and taking all the medications but it’s not Cancer and that makes him and the rest of the family very happy. So, even with all his new ailments Elijah is living his life, talking of his future plans which includes being a world renowned Entomologist and maybe and architect. He also wants to get married and have 5 kids. He wants to live next door to his brother because that’s his best friend and they love each other and are extremely close. Elijah, after years of learning issues due to his chemo, has received his 4th letter home to inform us he has made honor roll again. Yes, our journey has been traumatic and we are still not fully recovered from it all. The fear and worry never goes away. But we look at our Beautiful, Brave, Kind, Loving, Bright and Precious Warrior child Elijah Jevon Lennon Blades and say Thank You Lord and Thank You Dr. Weinblatt and team for giving us back our Precious Elijah. Our family is complete. Elijah says all we need now is a Yorkie puppy and we’re good. We LOVE that little man always and forever.

The Childhood Cancer Ripple Effect

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