Jaxson is a smart little dude. He knows so much about animals and dinosaurs! He started his love of dinosaurs I believe when he was 3-4 years old and he just amazes me with the information he retains! He laughs at just about anything which is great for me.. because “I am one funny mommy” lol! He’s got an amazing imagination. He loves to play with legos, puzzles, and his hot wheel cars. He also loves jumping on our trampoline with his siblings, swimming, and going on adventures around the neighborhood with his younger brother..scouting out for “dinosaurs ” or whatever he decides it is that day. He just recently was with my aunt & uncle at their camp and took to fishing. He loves it!
Jaxson was diagnosed with High Risk ALL on 12-10-2018. He was admitted to the children’s hospital at UVMMC, where he stayed for 2 months. It was very intense for us and he had a few obstacles in frontline therapy. We found out that he has unfavorable genetics of his Leukemia. I believe it’s about 2% of all children diagnosed to have this genetic mutation called iamp21. He started long term maintenance in October 2019 & we are continuing his journey to date.
Jaxson had hip pain on & off for 10 days prior to bringing him to the e.r. He started to walk like an elderly man! The Friday-Sunday prior to the E.R. visit he looked ill, his skin color was yellowish, the area under his eyes was dark, and he wasn’t eating very much. Sunday 12-9-18 he developed a fever and in the evening he had sudden leg pain that was so painful he was crying. We struggled to get him to sleep and I knew something wasn’t right. I called his PCP at midnight and she wasn’t too worried about it but giving me the option to wait till the morning to go in to see them or I could bring him to the ER. I made my decision 15 minutes after hanging up with the doctor. We arrived at the ER at 1:45 am and once the bloodwork came back there were red flags.
Jaxon receives a high dose of chemotherapy because he is in the very high-risk category. Currently, in maintenance, he goes into the clinic to get iv chemo once a month + starts the dreaded 5-day steroids and LP w/methotrexate every few months. His schedule got messed up because he was hit with a few viruses and the flu in December and January, which postponed his scheduled LP’s. Emotionally I am drained and his behavior has become a challenge. We are a blended family with 5 kids. Jaxson has really latched onto me which is understandable. I finally lost it a couple of weeks ago and we as a family are currently involved in counseling. For me, it’s the PTSD and for Jaxson, we are still waiting on calls to find a good fit for him to have someone individually talk to him. So, our house is in a big transition period to rebuild our bond & structure & just be a little less chaotic!
I just love my baby! He is one special and very loved little boy. He doesn’t let cancer define him. And under these terrible circumstances, I as his mom have gotten to see this undeniable strength that is inside him and he amazes me every day!
Ali was diagnosed with ALL in February of 2015 after experiencing leg pain and fatigue. Ali has fought for 5 years and has had 5 relapses.
This is Ali’s 5th fight against cancer and we know her time left on earth is limited. Cancer has brought us a community we didn’t know about, friendships we cherish, and broken hearts beyond repair.
Wyatt absolutely loves anything related to transportation. If it moves he’s obsessed! Wyatt truly is a happy kid. He can find humor in almost anything.
Wyatt was diagnosed with ALL shortly after his 1st birthday. He kept having random fevers and a rogue runny nose that we could never get to go away. At the end of the night, he’d just cry in pain on the floor, refusing to crawl and we’d have to carry him.
Wyatt has received various chemo treatments including in-patient hospital stays, office treatments, and a few at-home infusions. Additionally, he’s had lumbar punctures. We’ve been fortunate that most of the treatments have gone well, and any complications have stemmed from additional viruses.
We’ve learned that cancer affects the entire family, parents, and siblings. We all struggle with the emotions of it, as well as Wyatt. We’ve grown to be more understanding and have a bit more patience with others.
He has remained so the sweetest and happiest boy throughout all of it. I’m always amazed by his calm demeanor and resilience!
Aidan first became sick in July of this year. It started with a fever and vomiting. Something just didn’t feel right about it to me. So we took her to the emergency room. His blood work came back extremely anemic and they started an emergency blood transfusion. Then they transferred him to the children’s hospital. Within 12 hours Aidan started crashing and was moved to the ICU with swelling on his heart. The doctors didn’t know what was causing it.
After a week in the ICU and another week on the floor, they decided that he had MIS-C from a covid infection. He was doing much better and came home. Then on September 16th, he started looking off to us again. We took him back to the children’s hospital ER. He was severely anemic again and also neutropenic. He went back into the ICU.
The next morning we were given the diagnosis, Acute Lymphoblastic Leukemia. Within hours we were being transferred to the ICU at St. Jude in Memphis. We spent a week inpatient there where Aidan was stabilized and started on chemo. We have been here for 40 days so far, with months to go.
It is hard for Aidan to be away from his father, sisters, and many critters that he loves. He has had some setbacks with treatment due to allergic reactions to some medicines. However, he is strong and determined. He keeps telling us that this is just a phase of his life he has to deal with. When he is cured he can pick everything back up with his life plans. He keeps good humor even when not feeling so great.
Jorrian is a big goof ball but to others he may seem a bit shy and stand offish. He lovessss the Incredible Hulk and Nerf Guns!
It all started with him waking up really early one morning crying out in pain and he couldn’t walk. His legs were bothering him and he couldn’t put weight on them. Then he got a really high fever with it that we could not get down with medicine. Eventually, he ended up getting a bone marrow biopsy and the results were Acute Lymphoblastic Leukemia.
Jorrian has had many rounds of chemotherapy and his only surgery was when his port was placed. I’m still not working and that is our biggest struggle at this point. We are just not ready to put him back in daycare due to his suppressed immune system and the fact his numbers still drop quite a bit. We decided that it would be best if I just stay home and take care of him until he can go to pre-k in a year or so. We also have 2 other children to take care of so I’ve been a pretty busy stay at home mommy!
Surprisingly, cancer has changed our lives for the better. I have been able to spend more time with all of my children and this diagnosis has brought us closer as a family. Having a strong support system is so important and we are STRONG for Jorrian… he is Loved and he knows it!
Delilah was diagnosed with Leukemia in August of 2019 at the age of 2. She was started on treatment right away and is still undergoing intensive treatment before she should be hitting the maintenance phase.
She had some blue veins appear on her chest above her heart and they would stick out a lot and get darker randomly. When they didn’t go away, I took her in to get looked at and they ran a ton of tests. I was called the following day to say she had fluid around her heart and lungs and to take her in right away, which they ran more tests and saw that she had a huge mass covering her lung and heart. She had leukemia.
No one understands what it’s like to live this life but they try to be supportive. I appreciate that. Delilah has been so strong during all of this and she inspires me daily.
