Amari Jacob Ukegbu Kalu was born on March 20, 2015 to Danielle and Jacob Kalu. We chose the name, Amari, because it means STRONG. We knew that our first born would be strong due to the heritage he comes from, but who knew that it would be so important in his life. Amari loves playing with balls, puzzles, reading books, and anything related to superheroes and Star Wars. Amari recently welcomed baby sister, Michal, into the family on October 19, 2017 and absolutely loves being her big brother. He is so sweet with her and such a big helper to Mommy and Daddy. Amari has always been a very healthy, active boy and loves playing outside with friends, and especially riding his new 4-wheeler. Then, on Saturday, February 24th, Amari began to complain of pain in his legs; the fronts of his thighs to be exact. At first we thought maybe it was growing pains or just a soreness from playing to hard the past few days. But, on Monday morning, when I asked him to go get his shoes on so we could go run and errand and he slowly moved his legs around to the side of the couch and, before touching his feet to the ground said, "Mommy, I can't do it," I knew something was wrong. I immediately called the pediatrician and she had me bring him into the office. The pediatrician examined his legs and did a quick check of everything else and wasn't sure exactly what it could be. Of course, while we were at the doctor's office, Amari was running and climbing and acting like his normal self and not complaining of any leg pain, silly boy. So, the pediatrician told me to keep an eye on Amari and his legs and to keep an eye out for fever because that could indicate some sort of infection. We went home and watched him carefully all week long. He had good days and bad days. Good nights and bad nights. Then, the next Saturday hit and we were supposed to go to the zoo with some friends of ours. He had a rough night that Friday night and wasn't sure if he felt up to going, but eventually said he wanted to go. While at the zoo, he again kept complaining of leg pain and Jacob had to carry him most of the way through the zoo. Amari began to act lethargic and pretty much completely lost his appetite.
On Sunday, March 4th, I called the nurse on call and she told me to take Amari to the ER because his not eating or wanting to walk on his legs was very concerning to her and she wanted to make sure he got checked right away. So, we took him to the Greer ER where he received an x-ray of his pelvic area and top of his femurs to see if that revealed anything. It did not and the ER doctor concluded that Amari had transient synovitis and that it was caused by the cold and sinus infect that he had developed at the end of January/beginning of February. We were instructed to give him Motrin every 6 hours for the pain and that it would go away in the next week. We also had a follow up appointment with the pediatric orthopedist for further confirmation that the x-ray was okay. Amari had good nights on Sunday and Monday, but on Tuesday, even with being on Motrin, he was up with leg pain ALL.NIGHT.LONG. I hated seeing my baby in so much pain and no matter how much I rubbed his legs, if I stopped even for a second, he would start back crying in pain. During that night I read up a little more on transient synovitis and with Amari's leg pains I just didn't feel that was the right diagnosis. I called the pediatrician first thing Tuesday morning and they got us into the office for another recheck of his legs (no swelling, bruising, redness or tenderness) and for labs to be taken. We left the children's hospital around 3pm anxiously awaiting the lab results.
Our pediatrician called me at 6:30 that evening. When she began the phone call with, "I'm sorry it took me so long to call you, but I wanted to speak with the specialist on call," I knew something was not right. The pediatrician told me that some of the numbers in the CBC are not what they should be and the on-call oncologist wanted Amari admitted to the hospital right away for further testing. She told me to pack clothes and some things to make us comfortable for a few day, so in shock I packed us all up and we headed out the door. We dropped Michal off with family and made our way down to Greenville Memorial Hospital. They checked us in and settled us in a room and the oncologist came to speak with us and make sure we understood why we were here. We said we understood and told him we would be anxiously awaiting the results of the additional blood work that would be drawn that night and early the next morning. Amari was not having it when it came time to insert the IV and draw blood. Jacob and I along with 2 other nurses had to hold him down on the table, but we eventually got his 'Spidey-sense' situated and got him back to the room to sleep. At 6 am we had another blood-drawing adventure and the blood work was shipped off. Thursday, March 8th will forever be a day scarred into my mind. That morning was probably the longest morning of my life as we waited and waited and waited for the doctor to come tell us the results of the lab work. Finally, around lunchtime, she came into the room, sat down in a chair and told us the worst news I have ever received in my entire life: Amari has leukemia (B-cell Acute Lymphoblastic Leukemia) My heart stopped and my eyes wandered over to the hospital bed where my baby boy lay as my ears and mind were trying to take in everything the doctor was saying. How could this be? How did my healthy boy develop this horrible disease?
After the oncologist left, Jacob and I began to call our family and tell them the news. That entire afternoon was such a whirlwind of making sure we told all of our family and close friends while also trying to attend to Amari as doctors and nurses were coming in and out of the room in masks and drapes, with needles and thermometers and other poking and prodding tools. Amari was moved from general pediatrics to a room in the hematology and oncology ward on Thursday afternoon and after a small conference with the doctor realized that we would be here until at least the following Friday. Tomorrow is Day 1 of 29 of Induction. After Induction, we move into the next phase of treatments which will be determined based upon the results of the spinal tap and bone marrow testing done on day 29. The total length of therapy, as long as there are no relapses, is 3 years. We have a long road ahead of us, but Amari is the strongest 2, almost 3, year old that I know and with all of the prayers and support flooding in I know that he will power through this battle against leukemia. “Jesus answered, "It was not that this [boy] sinned, or his parents, but that the works of God might be displayed in him.” John 9:3 Our prayer is that through this journey we are able to show the characteristics of God to those around us and those following us on this journey.
One year ago last night (March 7th), I received a phone call from our pediatrician telling me to pack an overnight bag for Amari, Jacob and me and to start making our way down to the Greenville Memorial Children’s Hospital and was given the name of the pediatric oncologist who was on call and would meet us there. It was there that they would draw more blood for more testing so that they could tell us the actual diagnoses for what was causing Amari’s leg pains, his sudden loss of appetite and lethargy that he was experiencing. It was the eve before Jacob and I were given the news that would forever change our lives: Amari has leukemia.
March 8, 2018 was just day 1 of 40 long months of treatment ahead of us.
This past year we have seen how strong and brave our son is as he fought hard to beat those leukemia cells, as he overcame a fear of being stuck by needle after needle to now not even flinching as labs are drawn or his port accessed, to seeing him embrace a whole new family of nurses, doctors, staff and other fighters who are battling alongside him.
My baby boy, who was 12 days shy of his 3rd birthday just 1 year ago, has blossomed into a little boy who amazes me more and more each day with his love for others, his giving and helping heart and his strength. Even though his world was turned upside down, he takes everything in stride. He is my hero and always will be!
Since my last post, Amari has been doing well. He’ll have the occasional day of his tummy bothering him more than usual or of feeling more tired, but that’s been the worst of it. He is currently in cycle 2 of Maintenance so we are starting to get into somewhat of a routine in trying to find our new normal.
That BK virus that Amari had last April when he had blood in his urine is back. Thankfully there wasn’t blood in his urine this time and the concentration of the virus isn’t as high as it was last time, but we are treating and monitoring it in hopes that we can get rid of it. He just finished a round of antibiotics for it and we’ll just keep running urinalysis to see where the levels are trending (hopefully downward).
His next appointment is Tuesday, March 12th where he will receive a spinal tap, infusion and begin his monthly steroid pulse.
I want to end this post with a link to a song by Jesus Culture called “We Speak Life”. I’ve shared it before, but it’s words are so powerful and fit our family so well during this time. We love you all and appreciate the continued prayers and support!!
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