Nova has so much personality. She’s very prissy. A sassy little thing! She is everything i dreamed for. Nova loves to be held and I admit she’s spoiled rotten. She loves to listen to music and she loves when mommy sings to her.
Nova was diagnosed with cancer on Sept 9, 2017 at only 11 days old. Nova did not have any symptoms of cancer. During her follow up check up at the doctor on Sept 4, 2017, Nova’s doctor noticed her head was oddly shaped. From there we came to Mobile and she was immediately to the children’s hospital. She has a malignant and rare brain tumor called Teratoma. Teratoma is a type of tumor that forms from the body’s tissues like muscle or bone. In malignant cases, radiation and chemotherapy are needed.
Nova had her first surgery on Sept 9, 2017 to remove the front half of this massive tumor. During the operation Nova’s heart failed and the doctors then did everything they could to bring her back. From then on we didn’t know if Nova would even make it through the night. Being the strong and smart little girl that she is, she got through it. The doctors then decided to try chemo. Nova’s brain tumor is so rare that only 2 kids have been diagnosed with this brain tumor. Nova started chemo and only did 2 rounds until the doctors noticed from a ct scan that the tumor was not responding. Nova is now in comfort care. There is no other treating to help my sweet girl.
I have been by Nova’s side since she’s been admitted and it has been a little rough because I also have a 6 year old son. He loves his sister so much and really enjoys every minute he gets to spend with her. This has really been a life changing experience with my whole family, but they have been here for me every step of the way. I never thought in a million years that my daughter would be diagnosed with cancer at only a week and a half old . It has made me learn to just value life and never take anything for granted. I would do anything to just make my daughter feel better. I strongly believe in miracles. My daughter is still with us today and i feel in my heart that she has a lifetime to go. God has been so good to Nova. We thank him for everything. Nova is definitely a fighter. She’s a miracle!
Jessen loves to smile and he makes others happy without even trying to. He loves fast cars and big trucks. For a long time, he really loved tractors and farm equipment and he is really good at painting/drawing. He actually does paintings for some of the big agriculture fundraisers where we live and his paintings are auctioned off. So far, his paintings have raised over $11,000 toward ag scholarships for local youth, the 4H loan program, the Boys and Girls Club, and various other programs through the California Women of Agriculture. He is such a personable little guy and everyone who meets him is drawn to him. He has made so many random friends! Once, on a flight, the man sitting next to us wrote a poem for him. Another woman on another flight made a blanket for him and mailed it to him. We were at a concert and the people in the row behind us are still in contact with us because of Jessen being so friendly. Jessen once sat in a waiting room for an appointment and the only other person in the waiting room was an older man. Jessen sat and talked to him about tractors for about 45 minutes. The man thanked him for the conversation and told him he made his day so much better. Jessen is just amazing! He loves to be outside, he loves country music, and he is such a fun loving person.
In March of 2013, Jessen was having multiple episodes of vomiting, stomach pain, constipation, getting super tired easily, weight loss, and was anemic. We discovered he had Stage 4 High Risk Neuroblastoma. He had 6 rounds of chemotherapy, a surgery for biopsy of tumor/placement of central line, another surgery to remove the tumor, and an emergency surgery for bowl obstruction due to scarring from previous surgeries which resulted in placement of an ostomy for 3 weeks. He then had to have another surgery to reattach intestines, 12 rounds of radiation, 6 rounds of antibody treatments, and finally a surgery to remove the central line.
Jessen currently continues to go for follow up scans, labs, and appointments every 6 months. His follow-ups are a 2 day process at a hospital that is 3-1/2 hours away from where we live. We stay at a hotel when we have to go. He has to have an IV placed so that he can have labs drawn and 2 types of dye injected for his scans (MIBG and CT) and he has a PTSD type episode each time an IV has to be placed where he is completely inconsolable and is shaking, crying, and screaming until they remove the IV.
Jessen and I lived together in a house with our pet cat prior to his diagnosis and I worked as a therapist with kids. When he was diagnosed I did not work at all through his treatment. We had to give up our cat and move out of our house. We moved into my mom’s house with her (she was living alone because my dad, Jessen’s grandpa, had just passed away from acute myeloid leukemia just 6 months before Jessen was diagnosed). We were not home very often due to his treatments and hospital stays. When Jessen’s treatment ended the end of May 2014, I went back to work, but only 3 days a week and not as a therapist. Jessen still had frequent follow up appointments at that point and we also just wanted some time together outside of the hospital. I finally went back to work full time in November of 2016 and am working at a foster agency. We are continuing to live with my mom.
When Jessen was in treatment he asked me if he could go to the grocery store with me when he was all better. After that, I started keeping track of everything he asked if he could do when he was “all better”. He wasn’t really one to watch cartoons, he tended to watch the Discovery Channel, Animal Planet, the Travel Channel, TLC, etc. So, he asked to do some pretty crazy things for someone his age. I didn’t want to call it a Bucket List so we call it his “Live Life to the Full-List”. Jessen has been parasailing, hot air ballooning, zip lining across mountains, deep sea fishing, and has traveled to Oregon, Washington, Nevada, Illinois, Florida, and all over California doing all sorts of adventures. We continue to add to his list and consider it our never-ending to-do list.
Erika was born a fighter. Having an extra chromosome, I believe, does that to you. She had some difficulties right after she was born. She had to have surgery to repair a duodenal stenosis and had to be tube fed for a while. She overcame it all. She took her time learning to walk and talk, but she accomplished that too. She attended daycare and preschool and now school along with her typical peers.
Erika is a sassy little diva. She loves to dance and sing and she loves to be on stage. She still loves Elsa from Frozen, but she also loves Teen Beach Movie and High School Musical. She’s fond of Daniel Tiger Neighborhood and Sofia the first. She loves playdoh and painting and coloring as well. She likes to listen to Kidz Bop. She also enjoys playing with her dolls. She enjoys going to the park and swimming. She loves to read and play games like Mario Kart.
We were devastated when she was diagnosed with leukemia on May 27, 2017. We live in Valdosta and we have to travel to Jacksonville (2 hour drive) frequently for her treatments, blood and platelet transfusions, etc. So far she’s had to be hospitalized twice for fevers and once for seizure-like activity. All of her chemo is done in Jacksonville. We are getting ready to enter the next phase of her treatment. She will need inpatient chemo for 2-4 days.
We have gas and now car maintenance expenses because our car needs a new set of tires. We are glad to have the Ronald McDonald House helping us with lodging though. Our lives have completely changed and I am unable to work because I’m caring for my daughter, but I wouldn’t change it for anything.
Because I’m traveling so much with Erika, I have missed out on spending time with our other two kids. I feel like I’m disconnected with my teenager (more so than normal), and my baby girl is feeling left out, but, I try to make it up when I’m home and try to spend time with them when dad is home. Erika has only been able to go to school a handful of times since school started the beginning of August, she’s either been in chemo or too weak to participate. We also have to watch her ANC numbers. If they are below 1000 we have to keep her at home due to her extreme susceptibility to getting sick.
Even with all we have been though, I believe that she will overcome this because she was born a fighter!
Samantha has a great sense of humor and laughs at everything. She is a comedian! She makes everyone she comes into contact with smile.
Earlier this year she was having headaches, blurred vision, lethargic, and she was not hungry. Then she woke up on mother’s day and couldn’t see at all. Two days later on May 16th, 2017 she was diagnosed with low grade malignant glioma. This type of brain tumor usually grows slowly and occurs more in children than adults.
She had a shunt installed to drain fluid. She has also been having chemo treatments each week for a month. She is on treatment number 5 of 16 of chemo cycles. She goes every Monday to our local hospital to do blood work. Just today she had an ultrasound and xrays to see why her stomach is distended from the fluid not draining from the shunt.
We travel two hours one way to get treatment. She has three other siblings at home that wonder what is happening to her. We worry about her not eating and not being able to see well. My husband stays home to take care of her while I work an hour away.
Through it all, she has never complained about getting surgeries. She holds back the tears every time she has treatment or gets blood work. She has never said I wish. Samantha is a tough cookie.
Grace began treatment for ALL on 5/23/2015 and ended on 9/17/2017. She had 4 major surgeries, and numerous inpatient stays. Both Christmases, she was inpatient or very ill. All holidays were spent caring for her. We are so fortunate for her to be here today and thank everyone that helped us during this horrible journey. We made so many new lifelong friends. Good can always come from tragedy.
Thees photos captured the celebration of the end of the worst 2 and half years of our life! It captured Grace taking her last dose of chemo. We can’t even begin to thank you!
Courtney is very spunky. She has quite the sassy girl attitude and loves to laugh. She is will always tell you what she is feeling and thinking and she is not afraid to do just that. She loves to dance around in dresses and be a princess. She is a total fashionista and loves to go shopping with mom and match her outfits for the day. She also loves to drag race with her daddy. She can’t wait until she is old enough to have her own jr dragster.
A routine doctors appointment turned into something serious. On March 8th 2017, our sweet and sassy Courtney was diagnosed with acute myeloid leukemia or AML. She has had 4 out of 5 chemo therapy treatments. Each chemo therapy treatment requires at least 30 days in the hospital. She has all the typical symptoms of chemo like nausea, tiredness, soar muscles and joints, swollen gums.
This cancer diagnosis has definitely changed our family. We have a lot less time as a family of 4 to spend together. My husband has been using his vacation time to take an extra day off every week to be able to go up to the hospital and be with her for 3 days a week while I go home and spend some time with our 1 year old son. While my husband works we have had to find a babysitter for our sone as well.
It has also changed things for the better. We cherish every moment we get to spend together and we are always looking to go out and do fun things. We have also decided that once this cancer diagnosis is over we are going to travel and experience things. Watching the Discovery channel is just not good enough anymore. We want to be there in the moment and experience first hand new cultures and places.