Daniel started having headaches and some gait changes along with anger and just altogether personality changes, through out 2016. I just thought it was because he had just turned 13 and all hormonal. The headaches, at all times but nighttime was the worse, they would wake him up he would vomit and scream in pain, lasting anywhere from 1 minutes to a couple hours, that scared me.
His pediatrician ordered an MRI. On December 23rd 2016, that’s when we found out he had a brain tumor. It was growing rapidly, it was the size of a golf ball located in his cerebellum close to his brain stem. He couldn’t have surgery for 2 weeks because there was tot much fluid surrounding it. So he started a high dose steroids to refuse the fluid. Surgery went very well and the surgeon was able to remove the entire tumor. Daniel thankfully didn’t have any side effects from the surgery, even though we were warned of the possibilities.
So we started the waiting game, what type of cancer is it? Medulloblastoma was the outcome, lots of testing and another biopsy later, and after a port placement, he started 30 days of intense brain and spine radiation, along with weekly IV and oral chemotherapy. Then a short break, to start intense chemotherapy treatment.
In July of 2018, he was finally declared in remission. No more chemo!! It was a very long long journey and it felt much longer than it actually was. In total Daniel was in the hospital about 250 days, not all in 1 stretch, but long enough that you feel broken at times. Daniel went from a active 13 year old to in a wheelchair with severe foot drop and high frequency hearing loss from chemo. But praise Jesus and Daniel’s will to live! He is back in school now (no wheelchair, no walker, no cane). He is still not 100% but amazingly wonderful and he has maintained A/B honor roll in AP classes his first year back in school since his diagnosis. He is my hero!
In August of 2017, our family moved from Colorado springs to Hawaii. It was a huge change for us as a family since had been living around my husband’s family for the past 5 years. We were excited for the new adventures of living the island life for the next three years.
Shortly after arriving, Riley became slightly lethargic, then she started to throw up almost every evening. After multiple trips to the doctor and the emergency room, the only thing that they could determine was that she was constipated. Then her left eye started to turn inward, almost like a lazy eye would. At the time, we assumed it was her vision making her sick and made her an appointment asap with an optometrist. After dilating her eyes, they were able to determine that it was not a lazy eye, and that she likely had excessive fluid built up in her brain. They instructed my husband to take her to the emergency room at Kapiolani Medical Center in Honolulu. They have the best and possibly only pediatric neurosurgeon on the island. I was in Florida for a class while all this was going on.
They immediately did a scan and determined that she had a tumor blocking the flow of spinal fluid. I got on a flight home and made it back in time to spend the night in the hospital with her before her surgery in the morning. The surgery was successful with near total recession. However, the tumors location had caused damage, and when she woke up she was unable to speak or move normally. After a few days of waiting on test results, they determined that she had Medulloblastoma.
Riley was in the PICU for almost 2 months, and another two weeks on a separate floor of the hospital. It took two weeks for her voice to return, but it finally did. She still has issues controlling her pitch. She has full body right sided weakness, so she has learned to use her left hand to eat and write. She is also unable to walk on her own. She has made significant strides and gets around the house on her own for the most part.
The biggest hurdle for us was being so far from his family. Had we stayed in Colorado two months longer, we would have had an amazing support system through everything. My mother does live on the island of Hawaii, so it has been helpful having her a 30 minute plane ride away as well.
She is the happiest kid I’ve ever seen, and almost never complains, even though I’ve told it’s okay if she does. She has been back in school full time and is doing very very well. I feel significant events like this either make or break a family. And although I truly wish she never had to go through any of this a it has brought us all much much closer. Her goal this year is to walk unassisted, so we spend a lot of time working with her. She also attends physical therapy, speech therapy and occupational therapy weekly.
Riley was a healthy, active 8 year old boy. I noticed he was closing one eye during his nightly reading, so I asked him about it and he said he was seeing double. We took him to the optometrist that week and he was given eye exercises. About a month later, he was noticeably falling a lot during hockey, became hesitant to tackle in football and, unbeknownst to us (parents), was having headaches at school. When the headaches appeared in the mornings, they were short but intense. I decided to read up on them. What I got from my research was to take him to see a doctor if the headaches were accompanied by vomiting in the morning. This happened shortly after and that is where his cancer journey began.
In the span of a year, Riley had 30 proton therapy treatments followed by 9 rounds of chemo treatment. For the most part, his body handled the treatment okay. He was able to finish protocol. Riley did struggle with acceptance of the diagnosis, and had a hard time with needless/IVs. Before diagnosis, Riley did not ever get sick. Taking medication, needles and hospital stays were all new to him so it is no wonder why he found it difficult. Despite the nausea, tiredness, hair-loss and many other side-affects of treatment, he attended school when he was not hospitalized. It was encouraged and I am glad he had the support of the school and friends during that time.
I’ve needed to remind myself that life happened before his diagnosis. Just because we had a Christmas party before his diagnosis, doesn’t mean that if we have another Christmas party it will come back. I’ve also needed to remind myself that Riley needs to just be a kid and that I need to let him grow by letting him do things on his own. We have been very fortunate that Riley can still do most things he used to do.
Riley’s diagnosis was a shock to us all. We are now almost 2 years post treatment and looking back, we managed to stay close through it all. Cancer will always be a part of Riley’s history, but we are really trying to focus more on the here and now. Live for today because the worrying of tomorrow is not healthy nor is it helpful.
Anna can be an adaptive, insightful, kind, goofy, and persistent kid. She loves being silly with her sister and brother, bantering back and forth with her dad, and helping her mom. She loves math and art, and enjoys reading and writing. Given the choice, Anna would probably choose to play games with someone all day. If she needed a break from the games, then she would most likely find a sibling to play with, a pet to snuggle with, or a baby to hang out with. Anna’s unwavering faith in God, her continued hard work, and her positive attitude has been an inspirational example to many during the last four and a half years.
Anna was diagnosed with cancer in early February of 2014, when she was six and a half years old. A few weeks before Anna was diagnosed, she began having intermittent headaches and fatigue. She came down with a stomach bug a week and a half before her diagnosis so we attributed her previous symptoms to the virus, but this time she didn’t bounce back from the virus like she usually did. When Anna began vomiting more frequently, complaining of more headaches, and extreme fatigue, we knew something was truly wrong. Of course, all of this is easier to understand and see in hindsight.
Anna’s treatment included brain surgery to remove as much of the tumor as possible, 6 weeks of high-dose radiation therapy, and an additional 6 months of chemotherapy. During her 9 months of treatment, Anna spent over 100 nights in the hospital; underwent anesthesia dozens of times; experienced multiple surgeries (in addition to the main one); and had more tests, procedures, blood draws, transfusions, and antibiotics than I care to count. During Anna’s treatment, our family life was severely altered. Our other children were 4 years old and 14 months old when Anna was diagnosed. Although all of Anna’s treatment happened in Madison (only a 20 minute drive each way on a good day), we needed lots of help from family, friends, and neighbors to get through each day. While Anna was inpatient for her initial 3 month hospital stay, we had to find childcare for our other children so one of us could stay with Anna as much as possible. My husband worked about 60% of the time during those months. Once Anna was discharged, we continued to need much assistance due to the complexity of her needs. Even though we hired a family helper for a few months that summer, we still asked for and received help (including meals, childcare, and yard work) from many people. The uncertainty of the future and the challenges of each day caused plenty of physical, mental, and emotional strain that entire year.
Anna’s entire neuro-muscular system was affected by her cancer and its treatments. At her lowest point, her muscle strength, coordination, and balance was similar to that of a newborn’s. All of her muscles were affected: large motor (used for walking, climbing, and jumping), fine motor (used for writing and anything else requiring our hands), visual motor (looking where we want to look), and oral motor (used for eating and talking). Anna used a wheelchair as her primary means for a long time and required the use of a g-tube for all of her daily nutrition for several years. Since her treatments ended and she became medically stable, she has worked hard to regain many of the skills she lost. She can now walk independently for short distances, or use forearm crutches or a walker for longer distances. She can also eat much of her daily nutritional needs, although she still needs a g-tube for some of her caloric needs.
Anna’s physical abilities are often the most noticeable results of her experience with cancer. However, like many children who are treated for cancer, she experienced damage to other “unseen” but previously healthy parts of her body. Cancer treatments can be pretty brutal on a child’s developing brain and body. Anna’s intelligence and personality remain intact, but her cognitive abilities were adversely affected by her treatments. She qualifies for an IEP for both her physical and her cognitive challenges. Because of all of this, Anna’s life as a middle school student is very different from a typical child’s life. She does not participate in sports nor can she play an instrument in band or orchestra due to her challenges. She has had a difficult time hanging out and playing with peers because of her physical limitations.
In December, Anna passed away.
In the darkest moments of 2014 when Anna was first diagnosed and in the hospital, what made us most sad as Anna’s parents was that our other children would not have enough lasting memories of their sister. They were both too young to have had Anna’s life imprinted onto them. Although we are sad and will miss Anna dearly, we are no longer concerned in that way for her siblings. We can see clearly how her life influenced both of them.
Through the experience and wisdom of Anna’s medical care team, we were given a gift of five more beautiful years during which our family was able to make many lasting memories with Anna. The limitations on her body due to cancer and its treatments did not prevent our family from finding joy in any event, big or small.
Our family is extraordinarily thankful to The Gold Hope Project for giving us the motivation and the means to have a photography session last fall. We will treasure these pictures of our family always.
Daniel loves elevator rides, playgrounds, waterslides, Cars, Blaze and the Monster Machines, Tsum Tsum cars and anything on an ipad.
In March of 2016, Daniel’s balance started to degrade. A few weeks later he started vomiting but wasn’t sick. Our pediatrician referred us to a neurologist who scheduled an MRI. It was then that we discovered he had Medulloblastoma.
Daniel has undergone 2 brain surgeries – a craniotomy to remove the tumor (They got it all, but the tumor had been pressing against his skull for so long that the bone they removed was too thin to be usable and couldn’t be replaced.) and placement of a VP shunt, 8 surgeries to place and remove central lines, 12 brain and spine MRIs under general anesthesia, 2 lumbar punctures, stem cell harvest, 3 stem cell transplants, too many platelet and red blood cell transfusions to count, and 30 sessions of daily proton radiation under general anesthesia.
Daniel was under post stem cell transplant isolation for 6 months and was not able to attend school for a total of 13 months after his initial diagnosis. He relied on an NG tube for his main source of nutrition for over 16 months and had to go back to Philadelphia for a 5 week full day feeding program in order to wean off of it. He lost the protection of all previous vaccinations and must be completely re-immunized.
Daniel had to re-learn how to talk, walk and use his left hand after his initial surgery. He continues to receive physical, occupational and speech therapy to this day.
During Daniel’s treatment, our family spent much time apart as most of his treatment was inpatient and he was treated at CHOP, 100 miles away from our home. Post treatment, he had to return to Philadelphia for radiation (7 weeks) and an intensive feeding program (5 weeks) – both times we had to live in Philadelphia, away from his brother, during his outpatient treatment.
Abigail loves all animals real and magical. She loves unicorns and her favorite time of year is Halloween. She absolutely loves it. She loves bug hunting and being outside playing. She used to love to draw. She still does once in awhile still. She likes doing arts and crafts. Horses are one of her favorite animals.
Abigail was diagnosed with cancer on May 3rd of 2018. In the time leading up to the diagnosis, her behavior had changed and she was not able to focus as well. She then started to have little headaches that led up to vomiting. She eventually told me that her headaches were at the base of her neck so we just kept pushing the doctor for more answers. We thought she was just having migraines but after a CT scan at the ER we were taken to Mott Children’s Hospital where she was diagnosed with Medulloblastoma. She just finished radiation and had a little chemo. We get a month long break and then start up the heavier doses of chemo at the end of August.
Any child that has been diagnosed with cancer diagnosis effects the family as a whole. You don’t expect to hear the words”your child has cancer”. It has been very emotionally draining. It gnaws at the back of your head even when you try to sleep. We went from a happy, healthy family to a family in the shadows of cancer. The fear of the unknown is overwhelming along with watching our once healthy daughter struggle with things she was once able to do. The enormous amount of gas money we use has also put a strain on our bank account.
Through it all, Abigail is a smiley, happy little girl. She is kind and never judges a book by its cover.
