Anthony is just the best! He loves to giggle and play with his brother and sister. He loves to play outside, loves Mickey Mouse, bubbles, and being silly.
Anthony was diagnosed this February and is currently in treatment. Prior to Anthony’s birth, we learned that he had down syndrome along with a heart defect that would require surgery within his first year of life. Once Anthony was born, he was also diagnosed with pulmonary hypertension and TMD disorder (pre-leukemia) and required chemotherapy at birth. He spent about 7 1/2 months in the CHOP NICU, where he received a successful heart repair along with g-tube surgery and treatment for hypertension.
We followed with oncology after leaving because due to having the TMD, he was at a higher risk of developing leukemia prior to age 4. This past June, we had been discharged from oncology, all the while knowing the warning signs to watch for, just in case.
In February of this year, Anthony developed a petechial rash on his chest and I asked his primary doctor if we could run some bloodwork (as a just in case). Once the results were in, she called and told us to go straight to the ER and from there, Anthony was then moved to the main campus of CHOP and from a bone marrow biopsy was diagnosed with AML. His only symptom was a “rash”.
All our children are older, so while, we’ve been through this before with his lengthy stay in the NICU, I think this time it’s a little harder on everyone because they have all been together more than apart now.
Santiago was diagnosed with leukemia on February 4th of 2020 at the age of 3 and right before the pandemic hit. Before his diagnosis, he had several ear infections and wouldn’t get better. I also noticed a loss of appetite, energy, and some bruises on his legs and arms.
He has had 98 chemotherapies. During each round of chemo, he would have to stay in the hospital for almost a month with only one week break between rounds of chemotherapy. We pretty much lived at the hospital for almost 8 months while the pandemic was happening, so it limited the amount of support we received.
We try to enjoy all the time we have together as a family. We do all suffer from PTSD as every time our son gets sick is hard not to think the worst.
Santiago is so sweet, very friendly, and positive. He has been so brave while fighting cancer.
Hope session by Maggie Rose Photography | Facebook
Everleigh is a spitfire! She is tough and so incredibly smart. Every time the doctors would expect her to be knocked down she proved them wrong. Treatment was fairly easy for her, she had very few complications. She loves all the attention. She knows exactly what she wants and has so much attitude. She is a mommas girl for sure! She loves books, and playing with anything that lights up!
On February 25th of 2020, Everleigh was diagnosed with infant Acute Lymphoblastic Leukemia. A week before diagnosis, Everleigh was lethargic and vomiting. Her dad and I took her to the emergency room and we were told she was constipated and was discharged. A couple of days later she was still not eating well and vomiting frequently so we took her back to the emergency room and they now said she had a UTI and we were sent home again. On the morning of February 24th, she woke up with blue lips and puffy eyes so I called 911 thinking she was having an allergic reaction. We were transported by ambulance to the hospital and they began running tests. The doctors agreed it was an allergic reaction and sent us home. About 15 minutes into our drive, the doctor called and asked us to come back because her WBC was a little bit elevated and they wanted to draw more labs. Her father and I were thinking “well she has a UTI, so that doesn’t seem unusual for a slight elevation”. After returning back to the hospital we were told her blood maxed out the machine at 440,000 WBC and that she needed to be transported to Children’s in Atlanta. Once arriving she was diagnosed with ALL and had a white blood cell count of over 1.6 million!
Everleigh has had lumbar punctures, bone marrow biopsies, several blood product transfusions, a bone marrow transplant, and many other things. She was treated for ALL and after treatment, her bone marrow was tested and we found out she had AML. She was then treated for AML and hit remission. We then moved to transplant.
We have struggled financially, and a little bit mentally/emotionally. It’s hard to watch your child fight cancer and not be able to help them! We currently are inpatient 4 hours from home. Due to COVID restrictions, we haven’t been allowed, visitors. We have missed many family holidays/birthdays, and just quality time. We have been in the hospital for a total of 101 days since February 25th.
Dylan was diagnosed with AML in February of 2021 after having frequent headaches, lethargy, and pale skin. His type of leukemia required intensive chemotherapy treatments, a long-term hospital stay, and a bone marrow transplant.
Dylan is home recovering and is cancer-free. Recently, Dylan has discovered a nut allergy. Other than that, he is healthy and getting stronger every day. We strive to find the silver linings and everything in life. Life, family, health, and love are huge blessings! We appreciate it every day!
Joshua is very outgoing, he loves to hang out with friends and play video games. Before he got sick he was playing football and baseball and would like to return to those sports in the future. While in the hospital he spent a lot of time coming up with ways to prank the nurses on his shift. He developed a club where everyone that entered his room to attempt to do a trick to put their name on the list, it became so popular even the doctors were stopping by to try. He is so kind and would have snack time each day 2x times a day to the nurses where he would pass out candy, snacks, and treats for them. He is always smiling and rarely has a bad day.
On March 13th of 2021, Joshua was diagnosed with Acute Myeloid Leukemia. Before his diagnosis, he was struggling with a sore throat that would just not go away. I had taken him to the doctor’s a couple of times but they thought he was dealing with mono. On the 3rd visit, I asked that they actually test him for mono and that is when they found that something was really wrong.
He did 4 rounds of very intensive chemo, where he had to live at the hospital. From March until September he was only able to come home 3 times for a few days. He has had to endure several bone marrow biopsies, transfusions, and a broviac line placed in his chest. It was extremely hard to have to live at the hospital and have the family split up. We have an older son, so I and my husband rotated days at the hospital so that one parent was always with the other child. So the family was separated for about six months. Our older son was not allowed to visit his brother due to Covid and that was really hard – they had to meet outside for about 5 minutes at a time to see each other.
Some things are the same as before cancer and some things have changed. I think we were a close family before Joshua was diagnosed and that has probably made us closer and appreciate being together more. I think that it has changed me in the fact that I am always consumed with the “what ifs” now that he is home and done with treatment. I think it makes it a bit hard to live in the present. I feel for Joshua that it really did not change him, he hopped right back into life where he left off.
Joshua is currently in remission from AML and is back in school, living life to the fullest. His hair has almost grown back in which he is very excited about. He loves to visit the nurses who cared for him when he is there for his checkups and wants to volunteer at the hospital when he is old enough.
Our son Booker was diagnosed with AML Leukemia on July 31, 2021. This has been a whirlwind few months and we are still trying to get used to our new normal.
Prior to Booker’s diagnosis, Booker was a very active and independent little boy. During the month of July, we started noticing some small gradual changes in his behavior. He stopped kicking the soccer ball, his appetite dwindled, and he wanted to be helped a lot more. Then he had a low-grade temp for 7 days straight. After back and forth with the pediatrician, they urged us to go to the ER. At the ER, they ran tests and found abnormal blood cells that looked like leukemia. It was there we were transferred to Comer Hospital and where we received his official diagnosis, AML.
We are currently enrolled in intense chemo treatment. Chemo involves around a 10-day hospital stay and then depending on his condition he can come home and rest while his counts/ANC come up. It’s been hard on our family because we also have a 4-year-old son, Rex, and he can’t come to the hospital. So it’s been hard having our family separated while in treatment. We don’t have any family close by so it’s been a lot on my husband and myself trying to balance it all.
One thousand percent this has changed our family! As a parent, you want to protect your kids, and to watch your young children face really hard challenges that most adults would crumble at is devastating. We now know how fragile life is and how special every moment we have with each other. But through this, I have also witnessed major strength from all of us. We are not close to being out of the woods but step by step we trudge through together. Figuring out the balance of our new normal has also been a tough adjustment, we all have our breakdown moments.
As hard as this chapter is for our family, I don’t want to bypass it. I want a snapshot of photos of our family and Booker so when he gets older, I can show him what a brave and strong boy he is. I want him to see how he conquered hard things with love and strength.
