Lucas is a fun-loving, humorous, caring, loving child. He is all boy in the sense that he loves to talk about bodily functions, he loves to roughhouse, loves superhero’s, getting dirty, etc. His favorite thing is batman. He is very smart and picks up on things quickly.
In the beginning of 2016, Lucas was having reoccurring fevers, stomach aches, leg pain and fatigue. On January 14, 2016 he was diagnosed with Acute Lymphoblastic Leukemia or ALL.
Right now we are in the maintenance phase of treatment. This includes monthly IV chemo, nightly oral chemo at home, and a spinal tap with chemo every three months. He deals with low blood sugar from time to time so especially on the spinal tap days where he cannot eat because of sedation, they have to give him dextrose. He also experiences episodes of strider when under the sedation medication. This means close monitoring and they have tweaked his medications to try to help prevent this from occurring. It brings fear to our family every time he needs sedation between the possibility of his blood sugars dropping and him not breathing.
I think the biggest thing that our family deals with is fear. I’m fearful of Lucas getting sick, so I am constantly watching him and my other 2 children for any signs of illness. And if the other two do get sick, I try to keep them away from Lucas so he doesn’t catch anything. I’m also fearful of him getting hurt because I get paranoid that he would end with an infection or any complications really. I know the doctor has told us to let him live a normal life of a 5, almost 6 year old, but at the same time I just want to keep him safe and healthy. I feel like I must be doing something right because the doctors and nurses have told me on a few occasions to “keep doing what you’re doing, there’s a reason he is doing so well”. We only have less than a year left of treatment, so I will try my best to keep him protected until it is done.
Declan is a smiley happy-go-lucky little dude! He loves Disney Jr tv shows, playing ball, running down the hospital halls in his batmobile walker, and adores his big sister!
A week and a half before Declan’s diagnosis I took him to the doctor and they said he had an ear infection. They gave him amoxicillin. The following week he became very lethargic and stopped being active and would whimper and cry when I moved while holding him. He stopped eating a lot and was very pale. Our son, #SuperDeclan, was diagnosed with ALL on 10/28/17 just before turning 9 months old.
He had a port placed on Halloween 2017. He’s endured multiple IV chemos, spinal chemos, bone marrow aspirations, steroids and everything that goes with having leukemia.
With Declan and I in the hospital for treatment (he doesn’t qualify for outpatient yet) and my husband and daughter home trying to keep the routines going. Our new norm is not being together except for a weekly visit on the weekends when my husband and daughter come to the hospital. There’s no option to play outside and get fresh air right now.
He’s a tough little man fighting cancer! He is currently in remission and his treatment plan is 3.5 years.
Olivia is the most affectionate, loving, funny & strong-willed 3 year old. She’s incredibly bright and uses a combination of words and signs to communicate. She knows over 100 signs! She LOVES singing & dancing. Disney music is her favorite. She has watched her current favorite movie (Trolls) about 100 times since we’ve being hospitalized. She also loves Moana, The Wiggles, The Laurie Berkner Band, and Signing Time.
In the fall of last year, Olivia had petechia on her feet and ankles, weakness in her legs and she couldn’t stand. She was diagnosed with ALL on October 6, 2017.
Livvie is our hero. This little angel has taught us so much about pure love, about what’s important in life and also what isn’t. She has fought 10 times harder than her peers to meet her milestones. Her perseverance, especially being so young, is nothing short of inspirational. She is generous with her amazing hugs & spreads joy with her infectious smile. We love her more than words can possibly say & will fight with her every step of the way, until she is cancer free!
Zoe is obsessed with stuffed animals, enjoys a good meal and has a mature palate! She would love to travel to many different places all over the world.
Zoe was diagnosed with Acute Lymphoblastic Leukemia (ALL) 3 weeks before her sixth birthday. After a her first trip to Disneyland, over Thanksgiving break in 2015 she started getting fevers. I initially took her in tho her pediatrician where they ran a number of tests with negative results, and I then asked for a blood test. I didn’t think much about it but received a phone call later that night. The phone call is a blur too me now, but whatever they told me I googled and it pointed to Leukemia.
After following up with our pediatrician he requested an appointment to the hematology oncology clinic at our local children’s hospital. I made an appointment first thing for the following week, but with fevers appearing I was told to go to the ED. We were sent home with a “viral suppression” diagnosis and I was told to cancel the appointment at the clinic. I couldn’t shake what I had already seen and wasn’t satisfied with the diagnosis. My Mom gut and my pediatrician’s persistence got me back in.
We soon had an appointment with the hematology clinic but things were looking better and told to come back. Another fever came on the appointment day, so we were rescheduled another week or two.
After 7 weeks from the first fever, a bone marrow biopsy was recommended. I got the call within 6 hours. We were told to pack for a week and come back to the hospital.
We were told this is the “best cancer” a child could get. I guess they meant treatable. In 1960 this disease was terminal. We had a chance 80% to be exact!
After all the genetic testing and other markers they put her in a standard/low risk category. Leukemia is not staged because it’s already throughout the body, but this category brought us into the 90% for a cure.
Treatment was hard for all of us. I cried for days while Zoe would sleep 23 hours a day. She was on steroids for 4 weeks straight and gained so much weight she was uncomfortable, like an overdue pregnant woman! Her hair shed, but she wouldn’t let me shave it. She went from the shower to a ponytail for months. We look back and tease her that she was the last samurai!
Zoe’s brother was only 4 at the time and didn’t quite understand what was going on. He was schlepped back and forth to his grandparents as we had a lot of hospital visits. He too missed out for the next two years. We couldn’t commit to anything for him. We didn’t know when another hospital stay would arise.
Zoe missed over one third of her kindergarten year. She tried to go back but after getting infection after infection she was told to stay home. We were isolated for what seemed like forever. Life as we know it was no more! Friends and family stayed away. Sometimes I think they just didn’t know what to say.
After a brutal summer, finishing the worst part of treatment, Zoe was able to start first grade. She started school 4 weeks late. She was bald, but she was beautiful. She got teased a lot. Kids associate cancer with death. You figure it’s usually their grandparents, not their friends. A boy in her class had just lost his dad to “C” which didn’t help.
The next year was uneventful, thankfully. A few stays because of fever or infection or an occasional blood transfusion. Treatment for ALL is over two years for girls (an additional year for boys). Finally after 27 months Zoe will ring the bell at her clinic visit May 9, 2018. She will continue seeing her oncologist for five years before she is considered cured. All we can do is hope for the best. We hope she had a full life. We hope she has minimal side effects from decade old medication. All of these kids fighting this battle truly are resilient.
We decided to have Lily tested for Celiac disease because she was grappling with digestive issues. The routine blood test also called for a CBC. We are so thankful we had her tested because we may not have discovered the cancer (ALL) until later. At her diagnosis, she had 55% blasts in her bone marrow, which the doctors told us meant we discovered the cancer fairly early. In hindsight, we can look back at pictures and see she was pale, had a lack of energy and would sleep more than normal.
Raven’s diagnosis started one spring morning. I was surprised to see my then 3yr old holding her nose while it was pouring blood. My initial thought was she bumped up against something, so once I cleaned her up and tried to get the nose bleed to stop I inspected her room. I found nothing out of the ordinary. Her nose began to bleed again, so a panic set in and I called my mom asked her to join me taking Rae (Raven) to urgent care. I recall walking in, and a nurse walking right up to us and asking me if I thought my daughter looked pale. I replied she had a pretty bad nose bleed, they took us right to a room drew some labs and within one hour our world was forever changed. We were taken to Phoenix Childrens Hospital where our journey began.
I reached out to Raven’s mom after she posted a photo about Raven’s birthday party on HopeKids, a non profit we were both a part of for kids with chronic illness. I really felt called to reach out to her. I wanted her to know that she could vent/cry/whatever to another mom that is going through exactly what they are going through.
We started talking and realized we lived very close. It took a long time to get the girls together because they each kept getting sick. The girls hit it if off immediately.
There is a special bond between Raven and Lily because they both know, even if they don’t talk about it, that they are both going through the same battle. Lily lights up with the mention of Raven’s name. She also knows she needs to protect her – so when she is sick, she cannot see Raven. But the best part is that the girls are just girls with each other – they play, they dance, they run around. It’s not about the cancer, the medicine or the side effects, it is just about two kids having fun together.
Cancer is an isolating world. There is something extra comforting to be able to lean into someone who is going down the same road. It’s also even better to share the triumphs with each other.
We hope Lily and Raven remain friends for a lifetime. God has great plans for this friendship and I cannot wait to see it.
Sarah is very goofy and loves to laugh. She loves to sing. She is shy when she meets new people, but once you get to know her, she is very outgoing. She loves music and stories. She loves movies that do not have any scary scenes in them. She loves to play with her friends and her sister.
Sarah was diagnosed with Acute Lymphoblastic Leukemia when she was 3 years old in October 2012. It started with a fever on a Monday afternoon, and it progressed to be so much more. After testing was done, she received the cancer diagnosis on the first Saturday. She went from being “healthy” on a Sunday, to having cancer a week later.
She underwent 2.5 years of chemotherapy finishing in February 2015. She relapsed in July 2016 and had a bone marrow transplant in December 2016. Unfortunately, she just recently relapsed again two weeks ago (February 2, 2018). She is awaiting CAR-T cell treatment.
Our family has to be separated while Sarah is in the hospital and the other parent is at home with her sister. We have had many unexpected leaves of absences from work. We will always wonder if her leukemia will keep coming back and if we will we run out of treatment options.
