Zaiya’s full name is Zaiya Ruth Anne. Zaiya means the lord is gracious, Ruth means friend, and Anne means Grace. She is truly a friend to everyone she meets, she brings joy, even in the midst of her struggles. There was one time she was doing an overnight stay at the hospital. Child Life was putting on an event for the kids, she walked down the hall to every door and said “Come on friends! It’s a party! Come on!” so that everyone could enjoy the party because she didn’t want anyone to miss out. That is my child, a friend, who loves to laugh, loves to have fun, and loves to explore.
Zaiya was diagnosed with ALL on April 13th, 2023. Her PCP thought she just had low Iron. As her mother I pushed for her to go to CHOP because her behavior changed dramatically. I have a very friendly, high-energy, bubbly, and content child. She became tired, stationary, cried easily, and always wanted to be held. I knew something was not right. We were told to go to a LabCorp for blood work, I refused and pushed to go to CHOP. We are glad we did. Her hemoglobin was a 2 out of 10 when we arrived. She was fighting for her life for two months while we advocated for her. She always asked to be held and we did it, even moved her into our bed. I believe she was able to keep fighting because she was getting the love she needed to hold on.
She had a port surgically implanted, and she has a mixture of Dexamethasone, Vincristine, Amlodaphine, Leucovorin, Methotrexate, and various other medications. She’s in physical therapy. Every three weeks she stays in the hospital for three days every week she’s in the clinic up to twice.
Financially, it has been a burden because we went down to one income so that I can be the primary caregiver. We also have another child who is nine months old. I have to take the two of them to every doctor’s appointment and every hospital stay by myself. Being able to prepare healthy meals for my family has become a challenge. Between running to appointments and managing at-home care we’re just trying to find our new normal and what we can do. We’re constantly exhausted but I’m still grateful that we have a fighting chance. It’s hard work but it’s worth it.
She was diagnosed soon after her brother was born and right before her third birthday. COVID hit our family hard, like the rest of the world, we had back-to-back challenges in 2023 was going to be the year that we could finally take a breath as a family, leave the house, and spend time with people we love. It all changed. it seems so trivial now but trips that we had waited five years to book. We finally booked and then had to cancel our trips to see family who we hadn’t seen in years. This threw us into another crisis just when we were taking a breath.
But, God is good and we were given a chance to fight for our child’s life. We weren’t told that she was terminal and had a fighting chance. That’s all we needed. Fighting is hard, and it takes a toll on us as a family, we don’t ever schedule anything in advance because everything can change from day to day. It’s difficult to do anything outside of medical visits. We are working hard for some type of normalcy, but we’re taking it hour by hour, day by day. we’re grateful for the moment we have figured as a family that things are good. and we take our heels in and fight when things are bad and stick together. We have learned to hold tightly to what we have to hope for the future but live in the present.
She’s a fighter and she’s an encourager. She’s loved by so many because she loves freely. I’m blessed to have her in my life.
His original diagnosis was on 8/2/2020 when Lachlan was just 4 months old. He completed treatment and “rang the bell” on September 27th, 2022, then relapsed 3 short months later on 12/20/22.
Initially, we thought Lach was just fighting a stomach virus that the family had all gone through the week prior only it was hitting him a bit harder since he was so tiny. About 36 hours in, he started to seem lethargic and stopped wanting to nurse, so we took him to the ER thinking he needed fluids. Within 30 minutes at the ER, they told us they wanted to airlift him to the Children’s Hospital, where we discovered that he had ALL and was basically in complete system shut down as the cancer cells overwhelmed his tiny body. His lungs were failing, he had bleeding on the brain and near constant sub-clinical seizure activity. His white blood count was over 1 million, which was nearly twice as high as the most seasoned nurse (26 years) on the oncology floor had ever seen. He became known as the Miracle Baby in both the PICU and HEM/ONC floors as well as in the sedation unit.
We suspected that he had relapsed when he had some bruising on his legs – which is normal for a busy 2-year-old. The difference was they weren’t resolving as quickly as we would have expected, so we sent a pic to his doctor. He sent us for blood tests, just in case “though it’s probably nothing.” Praise God that he did. That blood test showed 53% blasts and by the time we got checked into the ER a few hours later, they were already up to 75%.
Lachlan has 3 older siblings. They were 5, 9, and 7 when he was first diagnosed. Because of the severity of his illness, we have spent the majority of a full year in the hospital with Lach, in total. That means that we’ve essentially lost a full year of our kids’ lives that we can never get back. We all have anxiety and PTSD and so many other issues that stem from being separated like that and the uncertainty of Lach’s future. We were very blessed in that we had family that was willing and able to come to pick up the “bigs” at a moment’s notice so we never had to worry that they were being loved on and taken care of, but of course it isn’t the same.
And the original diagnosis was at the height of Covid restrictions so they couldn’t come up to see us at the hospital, either. For the first few weeks my parents would bring them once a week to meet us for dinner (they lived 2 hours away) and my husband and I would take turns going down to the seating area to see them, but then the seating areas were all closed so we couldn’t even do that. Truthfully, it has been incredibly difficult for us to heal as a family. We have been doing our best to help the kids work through their emotions, but the uncertainty never goes away so it is tricky.
Lach is just incredible and he has touched so many lives with his fight!
Levi was diagnosed on 2/7/22, he was one at the time and exactly one month from turning 2. His diagnosis affected all of us but he has been so encouraging and inspiring to us.
It started with random fevers one month prior to diagnosis. Slowly we began noticing behavioral changes such as being fuzzy, tired, less playful, chewing in clothing items and comfort blankies, hardly sleeping, and bruising.
He has had many hospital stays throughout treatment. Due to that, we have had many financial curveballs. We are a family of 5 and my husband and I take turns between Levi and our other two boys.
This has completely turned our lives upside down and has caused us so much trauma. Although it’s hard to not be stressed, we try to not stress the little things as much. This journey has made me realize how grateful we are every day to wake up and have each other. I try to emphasize to our kids that the little things don’t matter. Materialistic things aren’t important.
Levi is also our rainbow baby. He is a true warrior and so are his super siblings!
In Thanksgiving of 2021 we all got sick with covid. From November to January we spent every 7 to 10 days in the doctors office dealing with an unknown infection or virus. We spent tons of time on antibiotics and drugs. Finally one morning Jonus didn’t want to wake up. Immediately I took him to the hospital where we were medevaced to the nearest children’s hospital. He was officially diagnosed in January of 2022 with ALL.
This has made us more cautious with how we interact with others. It’s made us treasure the time we have together. It’s made us realize that life is short and those that show up during the worst are the people worth keeping.
Eve is somewhat shy but very intelligent. She is very aware of things around her and being creative. She loves art and crafting. She loves animals, especially cats.
Eve was diagnosed with cancer in June of 2021. We thought her symptoms were due to a positive COVID test, but the COVID never went away and after a month she became very ill very quickly which prompted a visit to the local ER.
She has had a weakened immune system, low platelets, and low blood count along with low energy in general.
We had to live apart for a long time leaving my husband to deal with home life alone. A lot of financial challenges from mom not working anymore to care for Eve.
Aubrey started with leg pain on and off for over a month and then eventually developed unexplained fevers. Doctors said maybe strep, maybe an ear infection, but despite two antibiotics over 3 weeks the fevers kept coming back. I knew something was off so her pediatrician ran labs. She had low platelets and the pathologist who reviewed her blood said they noticed immature b-cells indicative of leukemia.
She’s had two port surgeries because, in the first one, she struggled to heal and got infected. She’s had so many lumbar punctures that I’ve lost exact count and two bone marrow aspirations. She’s received IV infusions of chemo, oral chemo, and subQ injections of chemo. She’s had lots of X-rays, CT scans, echocardiograms. She just finished her 4th phase of treatment. She has one more left before she begins a year and a half of maintenance.
One major struggle we’ve had because of treatment is finding childcare for my younger son. We can’t afford a full-time nanny and it’s been hard to find someone for just 1-2 days a week or at the last minute.
I left my job to take care of her. We sold our house to pay off all our debt to be able to make sure we could afford her treatment and not go bankrupt. We had to downsize dramatically to a 2-bedroom rental. But thankfully it’s on my family’s property which has been helpful for support. On the days I didn’t work I used to watch my niece and nephew so my kids no longer see their cousins throughout the week.
Aubrey is spunky and strong-willed but that’s what makes her a fighter!
