Finn is a beautiful little boy who loves music and trucks. He is such a happy boy; loves Sesamee Street and Thomas the train. He also loves to read about farm animals and is a very easy going little boy. Due to his prematurity he had a brain bleed and was a little behind with walking and crawling but he is getting there and he is the most determined child ever. He uses a walker right now to walk.
Finn was diagnosed with retinoblastoma at 3 months old. (Sept 20,2016.) He was born at 24 weeks and was having an eye exam to check for ROP due to his prematurity. During that exam they found a large tumor in his right eye that took up his visual field. About 7 months after first finding the tumor in his right eye, they found multiple tumors in his left eye. It is now in both eyes.
We had no idea he had tumors in his eye. Because he and his twin were born at 24 weeks they check for retinopathy of prematurity and do that when the babies are around 3 months old; at that exam they saw the glow and knew right away there was a problem. They did a more intensive exam and found the tumor.
Finn has monthly eye exams under anesthesia. He has had 6 rounds of chemotherapy and gets laser and cryotreatments to the tumors that are still beginning to form. If the laser and cryo are done, it burns the tumor and a piece of his vision away. If it works, chemo does not need to be done. If this treatment plan doesn’t help, we will need to start chemo again. Due to his cancer and treatment, Finn is visually impaired and legally blind although he does still have some vision currently
Cancer has changed our lives in many ways. We had to move closer to the hospital because we were living in a rural area. Now we live with my parents because it’s very expensive to buy a home and live closer to the city. It has put a big financial strain on our family. Cancer has also changed our family in a good way (if cancer can do that). It made us realize not to take life for granted. Make memories that you will always love and share, family is what matters and as long as we have each other to hold on to on those bad days, we will be ok.
From the second Finn was born he was a fighter. He goes through his treatments and exams with ease and has a very calming way about him. He is a living miracle. He keeps up with his twin and they have an amazing relationship and language only they understand.
Ella Joy was first diagnosed with Leukemia when she was 4 in 2013. She went through 2 and 1/2 years of chemotherapy, and unfortunately, she relapsed in 2017 on St Patrick’s Day.
We took an emergency flight to Seattle Children’s Hospital. She went through high dose chemo, total body irradiation, and cranial radiation to try to get 90% cancer blasts in her bone marrow and the cancer in her spinal fluid to zero cancer. She needed a bone marrow transplant, and her baby brother donated his bone marrow to help her fight for her life a second time. We were in isolation for over one year.
Now, Ella Joy has a higher chance to relapse post transplant. Oncologists have told us she would suffer brain damage from all the high dose chemo and radiation. Her face could have been distorted and she could have been in a wheelchair longer, but thank the Lord, she seems to be doing much better now, and people may not even know she had cancer two times, her hair is even growing back!
Ella Joy’s cancer has changed our lives, both times. She has been such a fighter through both times fighting for her life. She never once complained, but always trusted in God and the prayers that were stored up for her. We never take one moment for granted but we cherish every moment that we can be together and make memories as a family. We pray for the cancer to never come back again, we pray for zero cancer and negative MRD, and that all cancer cells would be eradicated forever. Ella Joy is a special fighter. She is such a joy to our family, and she is a light to all those who hear her story.
Aidan’s personality is amazing, he is so funny, out going, smart, creative. He loves to make others laugh. He loves swimming and the beach. Disney world. Some of his favorite things are his dinosaurs and trains.
On September 15, 2017 I decided to take Aidan to the emergency room on a hunch something was wrong. He had been feeling sick the week before and had a limp, although that went away, the sick feelings never did. He was not himself at all. He was actually telling me he was tired and wanted to sleep. If anyone knows Aidan, he doesn’t sleep! Lol so that was alarming. Fast forward 3 days and demanding we figure out why he wasn’t eating they did a stomach ultra sound and a parents worst nightmare came true, it was cancer.
We have completed 5 rounds of chemotherapy – 4 rounds of chemotherapy mixed with immunotherapy and one major tumor resection surgery. Aidan’s cancer still wasn’t clearing so we decided to transfer care to Sloan Memorial in New York City. Here we have completed 6 rounds out 7 Immunotherapy treatments and completed 14 sessions of radiation.
We have since changed hospitals once again due to a potential relapse and we travel to Michigan. We found out in February that in fact was not relapse and he is currently on DMFO for 2 years, along with a chemo pill.
Cancer has made us appreciate more and make more memories but we also have to work harder as a family.
Lilly is my girly girl. She loves all things sparkly and pink. She has received a couple princess yarn wigs which she wears all the time. Lilly is sweet and kind and so thoughtful of others. She is also my art girl, loving all things arts and crafts.
Lilly was diagnosed with Acute Lymphoblastic Leukemia on August 20, 2018. Prior to her diagnosis she was experiencing leg pain, low grade fevers and fatigue – all common Leukemia symptoms.
Lilly is undergoing chemotherapy treatment. We live an hour from the cancer center and hospital, so we spend a lot of time driving to and from treatments. She has sow immunity so we do what we can to prevent infections – avoid crowds, etc. Otherwise physically she can do as she feels able.
We have had to make many changes in how we live life. Fortunately Lilly’s 4 yr old sister is her best supporter and friend and keeps her spirits high.
I, her mother, am a childhood cancer survivor. I too fought leukemia at the age of 17 and won!
When Isaiah was 3 years old, I took him to the emergency room for a fever. I figured it was an ear infection and doctors would give me antibiotics so we could be on our way home. But on this particular day, the doctor came back to the room and informed me that his white and red blood cells and platelets were down. He said that 1 out of the 3 or 2 out of three is ok but all three down is not a good sign. He then mutters, “It’s Cancer.” In a matter of seconds, our world changed. He was rushed immediately to start treatment – chemotherapy and a blood transfusion.
Two years later and he is currently in maintenance. He still gets oral chemo every night and antibiotics on the weekends. Every 3 months he gets his spinal tap along with Vincristine chemotherapy.
The diagnosis changed our lives. I had to resign my full time job to care for my child and give up my rental property and move in with his Dad for a few months. I had to get a part time job to make ends meet since Isaiah is dealing with medical issues that is associated with his cancer.
Despite his cancer, Isaiah is a true definition of a warrior!
Andrew spent months with high fevers, a weird “virus” and “cold” that just seemed to never go away. Towards the end of September, he had stopped being able to walk and eat pretty much at all and he was unable to turn his head without screaming in pain. When I had called the on call doctor I made it clear I wasn’t going to leave without answers.
I knew something was wrong with my kid more than just a normal cold or virus. We had been tested for meningitis and then sent on our way again with some iron pills for a very low hemoglobin. The next morning, I received a phone call from his pediatrician and was they were very concerned that we were sent away again. They had us admitted to Helen DeVos in Grand Rapids.
Within 24 hours, we had learned our diagnosis of Neuroblastoma Stage 4 aggressive cancer. Our world was flipped upside down. My oldest son, Aiden, was uprooted from his family and moved into my parents house. We spent almost the first 7 months pretty much in the hospital. We were only home for a couple days at a time before a fever spiked or something else came up and had to be re-admitted.
We are happy to be over with chemo and radiation and spending more time at home but next is the immunotherapy with some more admissions.
Angelina began getting sick months before her diagnosis. I began to notice bruises on her body, and a lack of interest with playing, partially due to complaints of leg pain. I took her to see her pediatrician on several occasions but her symptoms were dismissed as viral.
Then one day Angelina stopped walking because her leg pain had become unbearable, and she also began throwing up blood clots. It wasn’t until a trip to the ER that the devastating diagnosis was made.
Cancer has changed our lives completely. I have to work so I take Angelina to work with me and we ride the bus. This is an extremely difficult time for us. We’d like this photo session to mark this significant milestone of turning 5.
Carson is very funny and has the best sense of humor. Being silly and funny makes him laugh. He’s also very very sweet and thoughtful. His interests change all of the time but Pokémon, Dragon ball z, ghostbusters are a few.
In the spring of last year, Carson was having headaches, his eyes looked different and balance gating issues. He was diagnosed on August 8, 2017 with Medulloblastoma. It took 8 doctor appointments to get him diagnosed.
Before diagnosis he played football, basketball a very normal child and now he has so many limitations. He’s in a wheelchair due to Posteria Fossa Syndrome. He has nystagmus with his eyes since surgery. He lost some hearing from chemo but doesn’t like to wear his hearing aids. He’s a amazing child and I hope and pray he regains more of his baseline.
Leo is so happy, always! He loves toy cars and any ball. He adores his three older sisters. And is his mommy’s boy for sure!
When Leo was a month old and his stomach ballooned out and was very hard. We took him to the pediatrician who immediately sent us to the hospital. He was diagnosed with Neuroblastoma on September 8, 2017. Leo has had two rounds of chemo.
The stress of everything caused a lot of tension between us as parents and we split up for a while. We have moved twice. My daughter was homeschooled her 4th grade year. I (mom) have separation anxiety from my kids and I’m constantly worried that something is out to get them. Dad lost his job because of the missed days and the stress he was trying to deal with. We have now settled and are rebuilding our family, while trying to continue the fight against childhood cancer.
Julie started complaining of headaces at the age of 3. At her four year old check up, I told the peditrician that she often had headaches that were getting notably worse. She thought we should go see a neurologist but if Julie were to vomit again because she had vomitted that day to go to the ER.
Julie did vomit and we went to the ER where a CT scan was ordered. The CT scan showed a mass on her brain. We were then transported to another hospital and was told that Julie had a brain tumor and needed surgery immediately to relieve the pressure on her brain. We waited three weeks for the results of the biopsy of the tumor to find that Julie had a malignant brain tumor known as a Pineoblastoma.
She underwent a six hour surgery and the neurosurgeon was able to completely resecti her tumor. She had six rounds of intense chemotherapy and three stem cell transplants.
Julie received all treatment and surgeries at CHOP. We spent the majority of our time inpatient at CHOP for eight months. Julie was on restriction when she came home for 3 months. Treatment was difficult and being away from her sister was hard. She developed severe mouth sores, needed a feeding tube, and had terrible stomach pains.
It was incredibly hard to watch Julie go through all of this. She has lost the highest pitch for hearing, but continues to thrive. She is now back in school and doing well. We continue to pray that she will forever remain in remission and be cancer free.