Meet Warrior Elias
Years ago, before we hit the road, we had some incredible neighbors that we’ve kept up with over the years.
In 2022, their youngest son Elias was diagnosed with cancer. I’ve asked mom Kelsey to share their story with us.
First, introduce us to your family:
Elias, center front; then l-r: big brother Ayden,
parents Ryan and Kelsey
I am Kelsey and Ryan is my handsome hubby! We have 5 kids together and 4 grandboys! Elias is 8 and Ayden is 11. Their older sisters all live on their own. Emily is 26 and has Eli, Evan, Easton, and Everett. Cara is 25, and Kourtney is 22.
How old was Elias when he received the cancer diagnosis? What kind of cancer did he have?
Elias was in kindergarten and had just turned 6 when he was diagnosed with B-Cell Acute Lymphoblastic Leukemia in January of 2022. We started noticing little signs at first, like pale skin, bruising more than normal and no weight gain. He would complain of leg pain frequently, and then stomach pain quite often. He was playing rec league basketball and would fatigue and be out of breath easily. He would have fevers a few times a week and constantly have colds or a cough.
After a few doctor visits with no results or improvement we pushed for a blood panel. Before we were able to get those panel results, he got really sick and spiked a high fever the next night. Our local ER was packed full and pretty much told us we'd have to wait in line, which could've been all night through the morning, so I decided to bring him back home. I took him first thing the next morning to another doctor that checked his blood immediately. They couldn't believe he was able to be sitting up, or how he was able to even walk into the room his platelets and blood levels were so dangerously low.
They told me to go straight to CHOA/Scottish Rite, that they thought it might be Leukemia, so I carried him out and drove the 2 hours to Atlanta. Once they confirmed the diagnosis, that hospital stay was one week, but seemed much longer.
What treatments and/or surgeries did Elias face? Were there any obstacles or hiccups along the way?
Elias on his first ER visit, age 6.
Upon admittance, his blood counts were too low for treatment or port placement surgery. He was so very sick! He had 4 blood transfusions and 3 platelet transfusions before he could get his port placed and start chemo. They also did a bone marrow aspiration to find the type of leukemia he had.
Here are some of the notes I took during his first few days:
** Admitted Friday 1/14/2022
Room 573 Scottish rite Atlanta
We are looking at least a week here if all goes right. We are looking at leukemia. Shooting for Tuesday surgery, to pull both bone marrow and spinal fluid for testing to determine the type and treatment plan. Starting transfusion tonight, and will have to have at least two as his platelets and r/w cells are too low for operation.
We just heard the word leukemia today, only as a possibility and were urged to come here immediately. But it is. So we're here. They are positive about an extremely high recovery rate, but can take several years of chemo to be in remission.
It's so much info to hear and retain.
Currently we've had spaghetti, and they're working to make the playstation work so he can game a little.
Sat. 829am.....About an hour left on the second transfusion. They each take near 3ish hours, then have to wait 2 hours between. He's also taking antibiotics around the clock, and a med to prevent tumorlysis (?)
Hemo up to 5.6 at the 6am draw. Vitals stable. He's asleep now, but breakfast should be here soon! It is doctor after doctor test after test. Can you believe someone else's life saving blood is running through his veins?!?
Sat. 206pm.....Ry and I just talked with the 5th floor doctors on shift. We still need more results, but definitive type B-ALL, which is b cell acute lymphoblastic leukemia. Takes longer treatment, over the course of a few years, but less invasive. Higher survival rate. If any cancer news is good, this is the type people would rather it be, this is what they were hoping instead of the other types. They WILL do the procedures Tuesday, they WILL make sure his counts are high enough. He may need more infusion and/or platelets. They will administer a dose of chemo during the Tuesday procedure. We could be here longer than a week. They said his vitals are looking good, his color is looking good, his insides sound clear, and for a 5th floor patient he looks good. We have a long road ahead and will need your continued support and prayers.
Sunday … full of rest and lots of tv! Vitals and counts good, low grade fever all day, headache at night that needed oxy.
Monday MLK … headache is gone, levels are steady, a tiny bit lower than yesterday but still ok. They said he can go down to the game room today! Supposed to start procedures tomorrow at 1106am. Hemo 9.3 from the 4 am reading, platelets 18.
Got to go to the game room! Said his legs hurt and has a small limp and is a bit stumbly. Had another platelet transfusion after lunch today. 3pmish another headache, tylenol only so far. He's gained 5 lbs since we came here!
Third platelet transfusion started 10pm.
3 blood transfusions and 3 platelet transfusions
Tuesday 330am … hemo 8.7, platelets 128 … giving another blood transfusion which makes 4 total.
Surgery 1230 plus first chemo
Second chemo 615pm **
This is just a small glimpse of that first week’s stay on the oncology floor.
Besides the obvious fear and worry that your child has cancer, what were the hardest parts of this journey?
In the first 2 months we weren't allowed to have extended family or visitors because his immunity was so low. Not being able to help on the days he had a lot of pain and sickness from chemo. Waiting for good news/results. Being 2 hours away from his clinic. There were many hard or trying moments, but he persevered right through them!
Did you have a built-in support system for this cancer journey, or did one develop as you traveled this path?
Elias surrounded by some of his family and friends.
Right away Ryan's mom came to stay with Ayden while we were at the hospital with Elias. As soon as we were clear for visitors she and my in laws got their house ready to sell so they could move here to help us.
So many people, friends and strangers alike, reached out supporting, encouraging, and praying for our family. It was so humbling! Our church was a huge help time after time. We were not fighting alone!
How did your daily lives change once Elias was diagnosed with leukemia? And now that he has completed treatments, does life go back to “normal” before the diagnosis, or has life forever changed?
When Elias was first diagnosed, the only thing we were certain about was that God was going to heal him! Yes, it was scary and we were full of questions, but never doubted. We traveled to and from Atlanta at least once a week, sometimes more depending on the treatment cycle. We just took the days one at a time and tended to whatever was in front of us as we were able.
All the different types of chemo plus steroids made his little emotions really big. We found lots of patience and so much reassuring love was the way to deal with it. Meds also caused neuropathy issues, kidney damage, and obviously immunosuppression.
Since treatment has ended the neuropathy is decreasing and will soon be completely gone. Kidney damage has and will continue to heal, and we are looking forward to restoring his immunity in full in just a few more months!
The forever changed part is the character we gained from endurance, the trust secured in our Faith, and the bond of our family strengthened during this time.
What advice would you give to parents just learning their child has cancer?
Elias on he day he completed cancer treatments
and rang that bell!
There is HOPE! If you don't already know the Love of God, now's the time! We couldn't have stayed so uplifted without Him! Take one day at a time, and sometimes one hour at a time.
There are also tons of resources, from medical insurance help to playground sets, port access clothing, social media forums, and red wagon delivery!
Here are a few that were very helpful for us:
Roc Solid Foundation (Playground sets)
NCCS (National Children’s Cancer Society), which provided grants for gas allowance for clinic trips
Hug Your People (Red Wagon gifting)
Grand Tees on Facebook (Charity organization gifting zippered t-shirts for tots to teens with cancer)
He won!
On April 5, 2024, Elias completed cancer treatments and rang that bell, surrounded by his nurses and doctors, and a host of family and friends!
What does life look like now that Elias has rung that bell?
Life looks hopeful and full of opportunities! We are still under monthly blood checks and are looking forward to the 2 year mark for staying in remission so he can be referred to the cancer survivorship clinic!