When Samuel was 9 months old, he started having some trouble with head control. His head would slightly shake and I couldn’t figure out why, but I heard it could be from fluid in the ears. A few days later when his eyes started shaking I knew something was wrong. We took him to an eye doctor and he scheduled an MRI as a precaution. After his scan, we were told that he had a very large tumor on his optic nerve, and the next day he was being set up with a port placement and chemo treatment. He has been on multiple chemotherapies since.
You never expect your baby boy to have cancer. It changes every aspect and outlook of your life. We place our faith in God to see us through.
Samuel is the most amazing little boy. He is giving and loving to everyone he meets. He has been through something that no child ever should and he is the meaning of the word fighter!
Emily was diagnosed at four months old on May 25, 2013 with brain cancer called Optic Glioma. She will need 72 weeks of chemotherapy with hopes that the brain tumor will shrink enough to perform surgery. As of today she gets chemo every Tuesday and requires lots of physical and vision therapy.Emily has a long journey of recovery ahead but we know she can do it! She is blessed to have the love and support of her mommy and daddy, her big brother Alex and big sister Mariah as well as many family and friends.
Rosie has Neurofibromatosis or NF1 a genetic disorder that attacks the body’s nerves with tumors and the reason she has an inoperable brain tumor; it’s called a Hypothalamic/Chiasm Optic Glioma—Diagnosed 9-7-2007. She also has Bilateral Optic Nerve Gliomas and Bilateral Optic Nerve Atrophy. At the same time she was diagnosed with brain cancer, she was also diagnosed with a second life threatening condition called Acquired Obstructive Hydrocephalus. She has a VP Shunt an internal catheter to drain built-up brain fluid from her brain. She has had 142 doses of chemo, five different kinds, 3 different protocols, 19 surgeries, approx. 40 overnight stays in the hospital, at least 27 ER visits, over 1800 shots and hundreds more pokes and the list goes on and on. Her tumor is stable, then will grow, the stable then grow, the stable. She had tumor growth a year ago, but the tumor just stopped before we were going to start chemo again (medically unexplainable) so she has been off chemo for two years!! It’s has been six year now since her diagnoses. It’s been a crazy ride, one that will never end for Rosie. She sees 15 different specialists who manage her many different conditions and rare complications. Due to the main tumors location, she also has Central Precocious Puberty, Pituitary Gigantism, issues with her heart, extreme hypertension, neurofibroma (small tumors) on her body and more. She is often teaching her doctors because they just have never seen a case like Rosie’s before. Rosie is not on chemo right now, but she still spends a huge amount of time at the hospital depending on the month and cycle of appointments; we travel downtown Chicago anywhere from 2-8 times a month. Rosie is an amazing kid, despite all she faces and goes through, knowing there is no cure, she fights everyday, but not just for herself, but for all kids with medical issues, NF, brain tumors and pediatric cancer. She started her own organization called Rosie’s Toy Box were she collects new toys for hospitalized kids. She dresses up as a blood drop and volunteers her time at blood drives. She publicly speaks at local high schools and motivates the kids to get involved. She got 150 High School students to shave their heads with her this year and raised $18,000 doing it. But that’s nothing, she has raised well over $325,000 for her favorite charities and is Chicago Dance Marathons number one individual fundraiser 5 years in a row and can’t be beat!! We have hope, we have faith and we have love in our lives. We live one day at a time and enjoy each moment!! We don’t know how long Rosie will be with us, but she is making her mark while she is here!! 🙂 Thank you for your consideration.
JD was diagnosed with an inoperable brain tumor called Optic pathway Glioma brain tumor. We have been battling for over a year now. Our little trooper has battled and won!!! Last month we had a big day. We walked out if the clinic doors praying that this is JD’s last chemo treatment!!
Hope Session by Lisa Hunderman’s Photography. website | facebook
