Emma is 10 years old. She loves to dance and craft. She has the sweetest heart of anyone I know! She’s so loving and caring! Emma also suffers from severe anxiety which has made her journey much worse. But her journey is also making her stronger! Her anxiety is not 100% gone but she is much braver now. She’s a warrior!!!
Emma has had migraines since she was 4. So in October of 2017 when she started complaining of double vision and bad headaches every day, we thought it was just migraines. I took her to the doctor they said it was probably sinuses and gave her an antibiotic. I asked for an MRI. An entire month later she still didn’t have the MRI appointment. On the weekend before Thanksgiving her left eye started turning inward a little a few times a day, and again she was diagnosed with slight esotropia at age 6. We thought her esotropia was just getting worse. Then her migraines were so severe she was constantly vomiting for 2 days. That cleared up so we thought it was a stomach virus. But her vision started going black, and her eye was permanently stuck in the corner. So I called her optometrist. We had an appointment the next morning, he sent us to a neuro ophthalmologist the following morning. She saw swelling on her optical nerves and sent us to our local children’s hospital’s ER for an MRI. We had to be admitted because with her anxiety she couldn’t do the MRI awake and had to be sedated. This was her first ever sedation. I was terrified!
Before Emma woke up, the doctors had my husband and I in a conference room telling us she had a cyst filled tumor in her brain. We were put on a 4 hour ambulance ride to Le Bonheur in Memphis TN. She cried the whole 4 hours while on the phone with me because she was scared. November 30th we were admitted and the next morning another MRI was done. The following Monday, Dr. Boop removed her tumor completely! She was walking the next morning!
They had thought the tumor was benign the whole time. On Wednesday,Dr Boop pulled us aside and told us the news that her tumor was malignant. I went numb. I walked back into the room with a blank stare and just sat on the couch. I couldn’t speak! My husband and I were in shock! I just looked at my mom and she knew exactly what was wrong. On December 8th we were sent to St Jude to wait on the final pathology. Ependymoma grade 2 is what they told us. But it was completely gone. They did a spinal and we got to go home for her birthday on December 14th. The following Monday we went back for the spinal results, it was all clear! But her tumor was a little more aggressive than they first thought so they wanted to do radiation. I was 35 weeks pregnant so we went home for Christmas. Our baby came early on Christmas Day!
We headed back to St Jude on January 15th for radiation. She had to be sedated every Mon-Fri. But thank god for child life! They helped her through her fears and she is finishing her last 2.5 weeks AWAKE!
This is the hardest thing our family has ever gone through. It has changed our family. We’re stronger, we’re closer, and I no longer take the little things for granted. It’s very hard with a newborn and a 5 year old with us but I wouldn’t have it any other way! I love my 3 more than anything! And I praise God her cancer is gone and pray it never returns.
Emma has grown so much throughout this process. She has become so strong! Her anxiety is under control for the most part and she is making friends! She went from screaming when a nurse walked in to flushing her own port and having dance parties with her doctors. I’m amazed with how far she has come! She truly is a fighter, my warrior! My hero!
Austin is on the go! He loves to run and play hide and go seek. He is a fun loving, sweet, baby blue eyed boy who gives so much love and teaches us about life. We call him our baby boss but really, he is our little hero.
On June 6th of 2017, Austin was diagnosed with Craniopharngioma. Austin had always been a very fussy baby and had never slept well. Leading up to his diagnosis, his head circumference kept growing and climbed off the charts. He had an ultrasound and it showed an enlarged 3rd ventricle. While we were in limbo waiting for our neurology appointment; one night Austin’s eyes rolled to the back of his head and he started vomiting. I knew then that something was not right. We took an ambulance ride, 3 hours away, to the University of Iowa hospital and they did an MRI. That’s when we got the news, “your son has a brain tumor”.
Austin had surgery that June to biopsy the tumor and drain the cystic part of the tumor. We are now at St. Jude’s and he is on his 22nd proton radiation treatment. We have left our three other kids back in Iowa and it has been very hard being away from them, our families, jobs, and our normal life.
The way we look at life now is very different. It’s not about things, it’s about moments in time.
Isabella is incredible! She loves music, dancing, everything Disney! She is social, loves to walk the halls in the hospital saying hi to everyone. She really has a magnetic personality. She is smart, witty and beautiful.
When she was 17 months old she started to lose her balance and was vomiting. She was diagnosed with a rare and aggressive brain tumor called Atypical Teratoid/Rhabdoid Tumor or AT/RT. She has surgery, 30 rounds of radiation and is currently on round 12 of chemo with 3 more to go.
We don’t have a lot of “good days” with Isabella so the few we do we try and take advantage of them as much as possible. We spend a lot of time in te hospital. The fear and stress can be overwhelming. We’ve lost friends and we’ve gained friends. This has restored my belief in humanity though. People have been very generous and caring.
Last month we started a new chapter in this journey. This chapter is about recovery (physical and emotional). It’s about gratitude, healing, love and family. A ton of bricks were lifted off my shoulders. A weight that has laid heavily on me for the past year. We are off of treatment, Isabella is NED and scans are clean! No mysterious spots or anything suspicious. God is good. Today we breathe a sign a relief. We breathe hope. We know we will never be in the clear, we know how quickly things can change and we know this cancer can always, at any point, come back. We also know that we are living today, THIS special moment. It’s time to celebrate and LIVE!
Ryker has always been the happiest baby. Every parent says that, I know. But, nurses beg to care for him. He loves people and music. His smile and laugh are just contagious!
In the fall of 2016, he was having nausea, vomiting, loss of balance, and was lethargic. It was then we discovered he had recurring desmoplastic medulloblastoma. He has had three craniotomies, emergency drain placed for fluid on the brain, g tube placement, broviac and port placements. His treatment has caused delayed gross motor and vocal development and he was considered failure to thrive for weight development.
Childhood cancer has changed life in every way imaginable. We attempt to continue our full time jobs, keep our marriage intact, maintain our home, and care for our animals all while making Ryker our first priority. There is nothing in our life that is unchanged because of cancer.
Through it all, Ryker is just an amazing fighter. He was born witb genetics that unfortunately caused his brain tumoir to grow. But, his spirit his unwavering. In our year battle, I could count on one hand when he was fussy. He’s the strength for everyone around him.
Gunner had slight tremors and deterioration of eyesight, all in one day. We went to the pediatrician and ophthalmologist then straight to the ER and into PICU. We found out he had low grade glioma on his optic nerve and surrounding his hypothalamus. That was quickly followed by a 28 day hospital stay and multiple brain surgeries. He is currently on his 5th protocol. The current treatment is an oral treatment. It is fairly new so we are still learning the effects. He has a wonderful attitude but gets tired and grumpy at times. Blood draws are hard. He has anxiety about port access. We are working through all of this.
His tumor has left him visually impaired, so that is a big obstacle he is faces. He is in school now so we are learning how to teach him as we work with his abilities. He is very smart and it is frustrating for him sometimes. We also deal with anxiety and endocrine issues due to his tumor location. He also has a VP shunt to help relieve the pressure from the hydrocephalus caused by the tumor. But he is the bravest and coolest kid we know and he will be just fine.
His tumor has completely turned our world upside down emotionally and financially and really in every way possible. It effects all of us…Gunner, his sister, my husband and myself. Our focus is healing him and that trumps all things, as it should. We dream of a day that he can be off treatment and have a break. We have learned to have a new normal and find joy in the blessings we are given.
Sam is a very loving boy who has a great sense of humor. He loves building with Legos, the very large sets! He loves video games, going to Cedar Point to ride coasters, swimming and has recently joined band playing the clarinet. He also took golf lessons this summer.
When Sam was 4 years old he was having massive and frequent headaches. This was concerning. On December 30th, 2008, we learned why. He had a brain stem tumor. He started chemotherapy in August 2009 (with port placement surgery in same month) through Dec 2010. He did another cycle of chemotherapy in November 2013. He has continued MRIs to check tumor status. He has had approximately 40 of these MRIs. His tumor is currently stable.
Childhood cancer has changed our life. We still struggle financially because of medical bills due to doctor visits and MRIs. We try to remain strong as parents, but always have that worry in the back of our minds of his tumor growing again. Sam struggles with weakness/tiredness when walking so he does not participate in sports. However, we have learned to cherish each and every day with one another and not take things for granted. We have also met many wonderful people and organizations through his cancer journey.
Sam is a true hero who has endured so much. He is a fighter and a warrior who keeps a smile on his face!
