Elliana is super fierce. She is not afraid to tell people what she wants and when she wants it. She loves music more than anything. Her dad is from Mexico, and he often plays her music and she will just sing and dance along. She also absolutely loves Mickey mouse. She is very independent and loves to push limits. Our little dare devil.
Elliana had a seizure on December 12th, 2017, three days after her 1st birthday. This seizure led to us finding her brain tumor. She was officially diagnosed with Anaplastic Astrocytoma on Jan. 4th. Since her diagnosis, Elliana has battled through 6 rounds of chemotherapy and seven surgeries. I think the biggest battle for us is mentally dealing with the after effects. We all suffer from PTSD. It has changed the way we do everything.
Cancer has 100% changed us, in both good and bad ways. Her cancer has made me a helicopter mom. I am scared of everything. I worry so much about our children getting sick because it was so hard watching Elli battle cancer. Not only that, but her sister has a really hard time. She still feels like she is less cared for or loved. we are doing everything we can to show her we love her. Plus, our marriage suffered for a long time because of it. We are doing so much better but, it was hard.
Elliana watched her great grandfather die of complications of his cancer one day after her first birthday, and then three days later… bam, she had a seizure. She was only given a 20% chance of survival and every single round of chemo she always blew her doctors away with how strong and resilient she was. She always came back swinging.
Teagan loves spider man and super heroes in general but spider man is his favorite. Teagan likes to explore and for the most part is a joyful, loving little guy!
When Teagan was almost two years old, he was diagnosed with Pilocytic Astrocytoma. Leading up to his diagnosis, Teagan started stumbling and was very clumsy. He then developed a head tilt but also had an ear infection when the signs started. He fell three days later and started vomiting so we took him to the ER and they did a CT scan and that’s how we found it. He has had to learn to do most everything all over again. He has a weaker left side, sixth nerve palsy, can’t regulate his body temperature, and sometimes has a not so nice temper.
Teagan has been through three brain surgeries since October 2017. Thankfully we have avoided chemo so far and we are stable and clear of new tumors at this time. We do MRIs every three months to watch for new growth. We struggle with family time together because of appointments and Teagan not being able to stand the heat for too long. Cancer has changed a lot of things about our life but we are slowly getting back to almost normal. it isn’t easy but we are pushing through.
Teagan is the baby of six. He has fought through this all and still keeps a smile on his face. He motivates us all!
Victoria is quiet when you first meet her, she is a little shy and introverted; however she is very social and loves to talk and hang out once she knows the person and is comfortable. She has a wicked and dry sense of humor. She processes information very slowly so sometimes she takes a very long time to respond and people think she is ignoring them. She is just working through the information. She LOVES to dance, she is ballet dancer and just got on to pointe (Physical Therapy finally made that possible). She is 13, so what makes her laugh is no longer a fixed thing that I can quickly hit on, it seems to change daily. She also loves to sing. She has to work harder then most kids to do average but she does it with grace and most don’t realize it. She is sweet, kind, and funny. Looking at her you would have no idea of the challenges she (we) have faced in the last 6 years.
When she was 7, she was fading, complaining of headaches, not participating in activities because she was too tired or had a head ache. Then in late July 2012 she started throwing up every morning for weeks, but then would be okay by mid day. She was sort of “grey” looking and wilted. It happened slowly and over time, but it became very noticeable in August 2012. She was always tripping, falling, and running into things. She would walk like she was drunk. It took a while to see the issues as a whole because it was such a slow slide down. (her tumor was very slow growing) She was diagnosed in August of 2012 with Juvenile Pilocystic Astrosytoma.
She has had 3 brain surgeries, two to remove tumors and one to place a permanent internal medium flow shunt to relieve reoccurring hydrocephalus due to the multiple brain surgeries. She has had to have corrective eye surgery to fix what got damaged in the first brain surgery. She did a year of chemo from 2015-2016 to address a 3rd and 4th reoccurrence of tumors in areas that could not be surgically addressed (inside her cerebellum and on her brain stem). She is just now completing PT for some muscle under development and atrophy issues from hospital stays and the tumor damage to her Verminous and cerebellum. We are currently in a stable state right now with regard to her disease. However for 5 years every thing revolved around what was happening in her brain. This was very rough on our other child as he was 4 years old when she was first diagnosed (he’s now 9). It was incredibly stressful for everyone. We are normalizing now, now we can do more then survive the day/week/month, etc. It was a challenge for many years, and I spend the year plus she was in treatment not working.
Cancer has definitely shaped perspective and life differently then if we had not had this diagnosis. My youngest wanted to know for a long time when he got to have a brain tumor because all he saw was the inequity of the attention she got. As he got a little older he started to have nightmares of her dying. She was always a bit introverted but all of this caused her to with draw more into herself. She is doing better about coming out of her shell now, but she had to worry about dying and being able to do basic functions when she should have been doing life carefree. It has effected her abilities in school and exacerbated some existing struggles she had. This means I spend a lot more time dealing with school issues. It impaired my ability to work or do much of anything for 5+ years. We are normalizing now. It brought us closer together and showed us we could as a family do anything.
Landon is an active and overall happy kid! He loves all sports and runs track and cross country at school. He’s silly, kind, caring and sweet. We watch Modern Family reruns on repeat, he has more stuffed animals than I can count, he loves all kinds of mac n cheese and pizza, and from the minute he wakes up, he’s on the go!
Landon suffered a series of seizures back in March 2017. We were told that it was a fluke and it was due to an unknown virus which caused swelling in his brain. On May 29th, he had more seizures that landed us back in the ICU, at which time we planned a trip to see an Epilipsy specialist at the Cleveland Clinic in Ohio on June 12th. Finally on June 9th, once again, he had more seizures that sent us back to the ICU and he was airlifted to Ohio a few days later. After a 2 1/2 week stay and a brain biopsy, his doctors arrived at his diagnosis of Anaplastic Astrocytoma.
Landon has endured 3 MRIs, 2 intubations, numerous CT scans, countless blood draws and a stereotactic brain biopsy. He is currently on week 4 of 6 weeks of radiation and week 3 of his first round of chemo, which will be continued for a minimum of 12 months.
Landon’s diagnosis has shook us to our core. My otherwise happy 10 year old has been diagnosed with an inoperable form of brain cancer with an extremely poor and short life expectancy. We have daily appointments for radiation, bi-weekly ones with his oncologists and a bathroom filled with medicines that he must take on a daily basis. He has spent more time this summer in hospitals than going to the pool and just being a regular kid. I have spent more nights in more hospital rooms than I’d ever thought I would. I have laid awake in fear every single night since March. And I have cried more tears than I ever thought possible. To say our lives have been turned upside down is the biggest understatement one could possibly make.
Despite this devastating diagnosis, Landon is truly a happy boy. He’s started 5th grade this year and was excited to get back to his friends. He and I have a special and unbreakable bond as it has been just him and I for the last 5 years.He has a strength about him that would rival any adult I know. And every time he gets knocked down, he bounces back insanely fast. He knows he has cancer and is very matter of fact about things. Every day we have together is truly a gift.
