To help bring even more awareness to childhood cancer, we at The Gold Hope Project decided to give a platform to all the childhood cancer heroes. Their story in their words.
Brendan
On February 19, 2013 our son, Brendan was sent to Victor Valley Hospital for observation and testing. He was told he had a tumor on his brain stem (DIPG) and was transferred to Loma Linda Hospital for further testing. The neurosurgeons at that hospital said the tumor was inoperable but they could slow the progression with chemotherapy and radiation.
We decided to seek treatment for Brendan thru a trial at Children’s Hospital Orange County (CHOC). Brendan started radiation and chemotherapy on March 14, 2013. We were hoping with treatment that we would be able to get Brendan at least 10 more months of life (the average life span of someone who is diagnosed with DIPG as there is no cure for this type of cancer).
Brendan’s tumor was an extremely aggressive one and did not respond well to the radiation treatments. On March 26, 2013, only 5 short weeks after his diagnosis, Brendan went home to be with Jesus (he was 12 years old). It was completely unexpected however, we know that he is safe in heaven free from suffering and pain. He gets to walk with Jesus every day and we are thankful for the hope that we have that we will get to be reunited with him someday.
Before Brendan got sick, he gave away a Bible to his best friend, Tyler when Tyler moved 6 hours away. They continued to stay best friends even with so many miles between them as they had developed a close bond since meeting in Kindergarten and became best friends right away. After Brendan was diagnosed, he gave away a Bible to his really good friend, Matthew that was given to him by one of our pastors at our church because the words were too small for him to read anymore. He wanted Matthew to know Jesus, too and Brendan wanted to give him a gift that he knew would last for eternity. We thought that this was such an incredible thing for a 12 year old to do. It was obviously something that Brendan cared very much about.
We knew that we wanted to do something that would carry on a legacy for Brendan and to bring glory to God at the same time. As a result of this desire and knowing Brendan’s love for his friends and others knowing the gospel and Jesus Christ as their personal savior, we started the Brendan Pederson Foundation: Brendan’s Bible Blessings, a non-profit charity that gives Bibles away to children who are fighting cancer. We want to show these precious children and their families that there is hope and that hope is Jesus.
We are thankful for the continued prayers as we walk the path that God has set before us. It’s a difficult one but we know that God will give us the strength that we need for each day. It is our prayer that you will gain a renewed faith in God as you follow our journey. Brendan wanted others to know about Jesus and so do we. It is also our prayer that you will know the gospel and believe that Jesus is the son of God, that he died for your sins, that you will accept him into your life and live your life for him so that you may one day go to heaven and walk with Jesus for all of eternity, too. That is something to look forward to!
We love you, Brendan…all the way to heaven and back. We will see you before you know it. ♥, Mom, Dad, and Shelby
Trusting in Him for all things, always – Mitch and Wendy Pederson
Diagnosis and Prognosis – DIPG (Diffuse Intrinsic Pontine Glioma) – Terminal upon diagnosis
How did you discover they had cancer?Over about a month and a half period there were various symptoms such a trouble swallowing, dizziness, and losing function in his right hand (he said he couldn’t write very well and that his hand wouldn’t work right).
What was your perception of childhood cancer before your child’s diagnosis? That it is sad and tragic but that it would never happen to my child and so there really wasn’t a need for me to pay a lot of attention to it. A sad truth I am not very proud of.
What kinds of treatments and procedures has your child been through? Are there any struggles your family faces because of treatment? My son only had 8 radiation and chemo treatments before he died. He died just 5 weeks after diagnosis.
What did you learn about childhood cancer after your child was diagnosed? Was there anything that shocked you about the disease? If there was one thing you wish people could do to help a family with a child battling cancer, what would that be? That a child could be diagnosed with a terminal form of cancer. I knew brain cancer was bad and most of the time deadly but when Brendan was diagnosed I still thought that he could beat it. Somehow my mind and spirit went into a sort of protective mode that wouldn’t allow the terminal diagnosis to sink in. He was going to beat it and as time progressed it became more obvious that he wasn’t going to. So shocking. I’m still in shock and he’s been gone 2 1/2 years.
If there was one thing you wish people could do to help a family with a child battling cancer, what would that be? Be there for them in whatever way that you see that there is a need. Do not wait to be asked, just do.
What do you think about The Gold Hope Project’s mission to bring awareness to childhood cancer through photography? I think that it is an amazing way to help spread awareness but more importantly to bring hope and beauty to the families who are affected by childhood cancers. Having pictures of your child and your family is one of the most desired things that I know I wanted and this project does this for so many families. I love it!
Thank you so much Wendy for sharing Brendan’s story with us. Check out the Brendan’s Pederson Foundation. The Brendan Pederson Foundation is a nonprofit 501c3 organization, IRS identification number 46-4109190. Donations made to The Brendan Pederson Foundation are tax deductible in the U.S. They can be found on Facebook at “Brendan Pederson Foundation: Brendan’s Bible Blessings.
To help bring even more awareness to childhood cancer, we at The Gold Hope Project decided to give a platform to all the childhood cancer heroes. Their story in their words.
Tyler
Diagnosis and Prognosis – Anaplastic Astrocytoma/ DIPG
How did you discover they had cancer? While trying to take a picture of Tyler with Santa in December of 2014, I noticed he had a lazy eye. I made an appointment with an eye doctor who told me his vision was perfect and that there may be something else going on. He recommended I take Tyler to get an MRI. Within 2 hours they found the lesion on his brain stem.
What was your perception of childhood cancer before your child’s diagnosis? I thought that most cancers had some type of cure. I thought radiation and chemotherapy was a cure. I had never knew of a child that suffered a childhood cancer.
What kinds of treatments and procedures has your child been through? Are there any struggles your family faces because of treatment? Radiation and chemotherapy.
What did you learn about childhood cancer after your child was diagnosed? Was there anything that shocked you about the disease? When we received Tyler’s diagnosis, we were told the best thing to to was to enjoy our son. His prognosis was (fatal and he had) 9-12 months. Here I had a healthy son running around, other than a lazy eye, and now my son was going to die. I was shocked by the lack of treatment options available for kids. You would hear about the different clinical trials and many available to adults or kids over twelve.
If there was one thing you wish people could do to help a family with a child battling cancer, what would that be? I had a great support system, but everyone being around helped as a great distraction to our new life. Whether it was in the hospital or stopping by my house, it made my son and family seem important and made me feel like I had a support system to fight with me in my corner.
What do you think about The Gold Hope Project’s mission to bring awareness to childhood cancer through photography? I believe that any awareness to childhood cancer is needed. We need to get any information out to the public about the number 1 killer of our children age 1-12. Sometimes when seeing a picture of what that child and their family are struggling with will make the situation hit home or become more pertinent.
Thank you Kristen for sharing more about Tyler’s journey!
To help bring even more awareness to childhood cancer this September, we at The Gold Hope Project decided to give a platform to all the childhood cancer heroes. Their story in their words.
Violet
On Monday, July 18th, 2011 our sweet baby girl Violet was diagnosed with Retinoblastoma, a pediatric cancer that develops in the retinas of the eyes.
The doctors did not catch this. We did. It started by listening to a gut feeling we had after noticing a very slight tracking issue with Violet’s left eye and a lack of emotion in it. Then, after seeing a white glow on that same eye in a handful of photos, we began to research online. Violet was seen regularly for her weekly appointments, her 2 and 3 month appointments and twice when she was 4 months old. At all appointments her eyes were looked at and nothing out of the ordinary was seen. In most cases of Retinoblastoma, pediatricians do not catch this condition in its early stages. This is because they fail to complete a simple dilated eye exam.
To date, our Violet Brielle has gone through CT scans, MRIs, surgeries, having a port-a-cath, countless blood draws, injections, 12 rounds of chemotherapy, 20 exams under anesthesia (EUA), scans, hospital stays for systemic infections and more. All of this began for her at just 7 months old.
After genetic testing, it was found that Violet has the RB1 gene mutation. This means that not only is she susceptible to cancerous tumors occurring in her eyes, but she also has a higher probability of cancer occurring in other parts of the body throughout her life. Her body does not produce the tumor suppressing protein that everyone else’s does. Specifically, Violet is more likely to develop a cancer of the pineal gland in the brain (pinealoma), a type of bone cancer known as osteosarcoma, cancers of soft tissues such as muscle, and an aggressive form of skin cancer called melanoma.
Violet was also found to have a small deletion in chromosome 13. This condition is very rare. It is known to cause many issues including growth and developmental delays, autism, retardation, low muscle tone, kidney failure, seizures, blood clotting, sensory processing disorder and more.
How rare is Violet’s diagnosis of Bi-Lateral Retinoblastoma?
*Retinoblastoma accounts for less than 4% of all cancers in children younger than 15
*250-300 children are diagnosed with Retinoblastoma each year, nationwide
*40% of children with Retinoblastoma will have tumors occur in both eyes
*30% will have the gene mutation
*5% of Bi-Lateral cases will have a visible chromosome 13 deletion
Violet’s diagnosis affects approximately only 13 babies out of the 4 million born each year.
Childhood cancer in general is NOT rare, however, Violet’s combined and specific diagnosis is.
Violet completed 12 rounds chemotherapy and tumors are stable and in remission. We wish her fight and risk stopped there but it does not. Violet continues to be closely monitored with Exams Under Anesthesia (EUA) where scans are done of her eyes, labs and Oncology follow ups every 16 weeks at Seattle Children’s Hospital. These EUAs and labs are to make sure there is no recurrence of cancer and her follow up appointments check on her physical well being in relation to the risks associated with her full diagnosis. MRIs, audiology and vision exams are also a part of her yearly monitoring plan.
We are very grateful that we trusted our instincts and had Violet seen by a specialist right away. Unfortunately, the tumor in her left eye was very large. There was a drastic reduction in tumor size through chemotherapy … the most her medical team had ever seen! But still, as it shrank it was revealed that a lot of damage was done. Violet’s central vision is completely wiped out. Thankfully, it was recently confirmed that her peripheral vision was saved! Even though a new tumor was found in her right eye during treatment, it was caught soon enough to treat with cryotherapy. Violet patches daily for 2 hours to strengthen her left eye as much as possible. We continue to pray for miracles in her vision.
Even through everything she endures, Violet is a sweet, happy, intelligent and very spirited little girl who loves life. Every day you can find her listening to music (especially her favorite Brandon Heath), singing, playing her little red drum set and dancing. She is always making hearts melt with her smiles, cheerful giggles and hugs.
Violet reminds us through her healing to always count our blessings. She has shown us the true meaning of faith and what being grateful with your whole heart is really all about. Every day is a precious gift.
Diagnosis and Prognosis – July 18th, 2011 our sweet baby girl Violet was diagnosed with Retinoblastoma, a pediatric cancer that develops in the retinas of the eyes. After genetic testing, it was found that Violet has the RB1 gene mutation and so her full diagnosis was changed to Bi-Lateral Retinoblastoma. Violet was also found to have a small deletion in chromosome 13.
How did you discover they had cancer? The doctors did not catch this. We did. It started by listening to a gut feeling we had after noticing a very slight tracking issue with Violet’s left eye and a lack of emotion in it. Then, after seeing a white glow on that same eye in a handful of photos, we began to research online. Violet was seen regularly for her weekly appointments, her 2 and 3 month appointments and twice when she was 4 months old. At all appointments her eyes were looked at and nothing out of the ordinary was seen. In most cases of Retinoblastoma, pediatricians do not catch this condition in its early stages. This is because they fail to complete a simple dilated eye exam.
What was your perception of childhood cancer before your child’s diagnosis? Our family was very unaware of the devastation of childhood cancer. We had never even heard of the type of cancer Violet was diagnosed with. No one around us had ever heard of it either. It made me angry as a mother … This enormous lack of awareness and education. It was also very upsetting that Violet had been seen numerous times by her pediatricians from birth and no one ever checked her eyes thoroughly. Had we not listened to our instincts that something was wrong when everyone was telling us Violet was fine, we could have lost her.
What kinds of treatments and procedures has your child been through? Are there any struggles your family faces because of treatment? To date, our Violet Brielle has gone through CT scans, multiple MRIs, surgeries, having a port-a-cath, countless blood draws, injections, 12 rounds of chemotherapy, 20 exams under anesthesia (EUA), scans, hospital stays for systemic infections and more. All of this began for her at just 7 months old. Our family faces great financial struggles and a very deep emotional impact due to our long 4 year battle against childhood cancer. We lean strongly on our faith to get us through it all.
What did you learn about childhood cancer after your child was diagnosed? Was there anything that shocked you about the disease? Our lives have been completely changed. When we became parents of a child battling a cancer diagnosis, things would never be the same. So many things shocked us about this terrible disease along the way. We learned our baby that we prayed for and finally conceived after almost 5 years could be taken away from us. We learned that new tumors can and did develop while going through chemotherapy. We were beyond heartbroken when we found out that Violet’s labs showed a rare genetic RB1 mutation that we had never heard of. This meant that not only was she susceptible to cancer re-occuring in her eyes, she was more likely to develop cancer throughout her body in her lifetime because hers does not create the tumor suppressing protein which stops her cells from multiplying. We were furious to find out about the lack of support, awareness and funding for research. Violet is in remission, but she is not cured. There is always a threat and because Retinoblastoma counts for 4% of all childhood cancer, there is not nearly enough being done about it.
If there was one thing you wish people could do to help a family with a child battling cancer, what would that be? Truly and selflessly be there for them. Childhood cancer brings you to the lowest and darkest times of your life. Families feel so alone. Go to the hospital, bring a meal, go grocery shopping, help clean their home, help financially, send a card, pray. Absence because you don’t know what to say is not acceptable. A hug can speak volumes. As a family that has and continues to goes through it, we never expect that our family and friends will know what to say or do. We just want to feel supported and loved.
What do you think about The Gold Hope Project’s mission to bring awareness to childhood cancer through photography? The Gold Hope Project is wonderful. We are so grateful for the awareness that you bring to childhood cancer and for capturing the beauty of these amazing children.
Has your family received a Gold Hope photography session? If so, please describe what those images mean to your family and what receiving the gift of photography did for your family.The Gold Hope Project has been such a blessing to our family. We were able to spend a fun day celebrating our sweet and brave Violet. And, we have received precious photos that we will cherish for a lifetime.
Thank you so much Shenay for sharing with us. Keep up with Violet here.
To help bring even more awareness to childhood cancer this September, we at The Gold Hope Project decided to give a platform to all the childhood cancer heroes. Their story in their words.
Ashton
Diagnosis and Prognosis – Hepatoblastoma- 3 years in remission on Sept 5, 2015
How did you discover they had cancer? We took Ashton in for her 2 year well visit and had no idea that she was sick! She wasn’t showing any signs of being sick! The doctor saved her life because he was very thorough and discovered that she had a mass on her liver.
What was your perception of childhood cancer before your child’s diagnosis? I remember months prior to my daughter getting cancer, I was driving in my car and listening to a fundraiser on the radio that was going on at St. Judes. Families were sharing their story of losing their child to cancer and I was crying nonstop in my car. I remember thinking that I would be devastated if that ever happened to my child.
What kinds of treatments and procedures has your child been through? Are there any struggles your family faces because of treatment? Ashton went through 6 cycles of chemo and she went through surgery to remove 65 % of her liver.
What did you learn about childhood cancer after your child was diagnosed? Was there anything that shocked you about the disease?I was just especially shocked by how many children go through cancer everyday! When you don’t know a child that has cancer you feel like it must be very rare. After searching for others that were going through our same experience I was saddened by the number of children I found battling cancer.
If there was one thing you wish people could do to help a family with a child battling cancer, what would that be? I think helping the family get connected with other families going through cancer would help out a lot! I found a lot of families going through the same thing but it was after her treatment. I would have loved to have more of a support group that could relate to us. Now I’m part of a hepatoblastoma group on Facebook and its amazing the amount of support that everyone gives out to families that are either done with treatment or are going through treatment right now.
What do you think about The Gold Hope Project’s mission to bring awareness to childhood cancer through photography? I think its beautiful!! I’m studying photography now and one day hope to be a part of the Gold hope project!
To help bring even more awareness to childhood cancer this September, we at The Gold Hope Project decided to give a platform to all the childhood cancer heroes. Their story in their words.
Paige
Diagnosis and Prognosis – Acute Lymphoblastic Leukemia (B-Cell)
How did you discover they had cancer? Over the course of Paige’s 3rd grade school year, she was sick more often than she had ever been before. Multiple days of school were missed due to random fevers that would last for days at a time. Time after time, we were told that it was just a virus and it had to run it’s course. As the 4th marking period was beginning, we noticed that Paige was tired more than usual…and starting to look very pale. Though she continued to act like her normal self, something just seemed off. On a Wednesday morning, the call came in from the school nurse that Paige was running yet another fever. Knowing that something wasn’t right, a sick visit was made at her pediatrician’s office immediately. The doctor’s took one look at her pale face and ordered a blood test. We went to the lab the very next morning, and by 10am Friday, we got the call. Paige was diagnosed with Leukemia. What was your perception of childhood cancer before your child’s diagnosis? It was one of those, “it won’t ever happen to you” kind of things. Yes, I knew childhood cancer was a very real thing. But it had never hit so close to home. I had no idea what any of the medical terms that were being tossed my way meant. I didn’t know what blood counts were. I was in for a crash course.
What kinds of treatments and procedures has your child been through? Are there any struggles your family faces because of treatment? Since April when she was diagnosed, Paige has received numerous chemotherapy treatments. She is currently in her 3rd phase of treatment, Interim Maintenance. With these treatments, she has to be an inpatient each time, as the medicine is such a high dose. She has had many lumbar punctures and bone marrow aspirations, needle pokes, labs drawn, and blood transfusions. She has had a PICC line placed and removed…and a port surgically placed for her to receive all her transfusions and treatments. She has spent over two months in the hospital since mid April. One month for her induction phase of treatment and an additional four weeks as she caught a cold that progressed into pneumonia. It’s not easy. My husband and I have four children between the two of us, and both of us work full time jobs on top of running a photography business. Paige’s father is around to help when needed and he attends all clinic visits, which helps add to Paige’s support system. But being the primary providers and well, Mom…having to leave to go to work is very difficult. I now know what it means to really want to be in two places at once. It hurt me that any of my children might feel slighted at any time, while trying to care for Paige and still be home and Mom to the others.
What did you learn about childhood cancer after your child was diagnosed? Was there anything that shocked you about the disease? More than I ever wanted to know. Not even just because of Paige, but because when you’re in the hospital for that long you meet other cancer parents. You automatically think that your child has it so bad, but then you hear of others who are so much worse off. Who don’t have a 90% chance of recovery, who are battling everyday to take one more breath. You really learn just how REAL cancer is, how ugly…and how it discriminates against no one.
If there was one thing you wish people could do to help a family with a child battling cancer, what would that be? Allow them time. Time to be together, stress free. To enjoy every second that they have to the fullest, because nothing is promised. And memories and captured moments that would last a lifetime. I am a photographer, it’s what I do for people already. I never really realized just HOW important every single capture is, smiles and frowns. All of it. Life.
What do you think about The Gold Hope Project’s mission to bring awareness to childhood cancer through photography? I think it’s wonderful. I know that I torture Paige even more now than I did when she was healthy (and that was a LOT). I make all of my children take photos more often. I want those memories for myself, but the photos of Paige…I want those for her to look back on when she’s 22 and see just how strong and brave she really is. To help show her that she can do absolutely ANYTHING she puts her mind to.
I also love sharing with other people, her strength…the fact that no matter what, she still smiling. She is an inspiration to so many others right now and I can’t wait for her to be old enough to understand just want that means.
Thank you so much Tammy for sharing Paige’s story. Keep up with Paige here.
To help bring even more awareness to childhood cancer this September, we at The Gold Hope Project decided to give a platform to all the childhood cancer heroes. Their story in their words.
Meet Tara
What is your child’s name?Tara S
What is their diagnosis and prognosis? Astrocytoma Grade 2 brain cancer. Her prognosis is good but she is in her second round of treatment due to relapse.
How did you discover they had cancer? She had a seizure in March of 2012 and was treated for encepholitis for 8 months until she had a cognitive decline in December 2012. Four days before her 8th birthday in February 2013, she had a brain biopsy and then 9 days after her birthday we were told she had cancer.
What was your perception of childhood cancer before your child’s diagnosis? That it won’t happen to my child. That it’s rare.
What kinds of treatments and procedures has your child been through? Are there any struggles your family faces because of treatment? She went thru 70 weeks of IV chemo. She did become allergic to her first line drug of Carboplatin and had to go to the second line treatment of Vinblastine. She finished treatment in July 2014 and then in January 2015 it was discovered that one of the three tumors in her brain had stated to grow so we are on a oral chemotherapy regimen for one year. We face many struggles that other cancer families do too because of the financial strain. We struggle to pay the bills each month. We are not able to do simple repairs on our house because all of our money is tied up in treatment costs.
What did you learn about childhood cancer after your child was diagnosed? Was there anything that shocked you about the disease? We have a whole new perspective on childhood cancer and the first is that it is NOT rare. I find it shocking that there has not been a new childhood cancer drug in over 25 years. That our kids don’t get the funding that they need to come up with better treatment options.
If there was one thing you wish people could do to help a family with a child battling cancer, what would that be? From my perspective it would be to know that this is not rare and our kids deserve more. Fundraising to help families with the simple things like groceries, gas money for their travels or helping with any repairs that are needed on their homes. Taking off the financial strain on a family is huge and mean more than people realize!!
What do you think about The Gold Hope Project’s mission to bring awareness to childhood cancer through photography? I LOVE IT!!!! It really brings it into the spotlight that our kids deserve more than they are receiving and that we need to help these kids and families get through this!
Has your family received a Gold Hope photography session? Yes
If yes, please describe what those images mean to your family and what receiving the gift of photography did for your family. They were amazing. Having my daughter photographed at Nationals Park was a dream for her. I would love to have her photographed in nature or doing her favorite things like play softball and helping animals out. But the pictures we took back in 2013 are awesome!!!
Thank you so much to Tammy for taking the time to share Tara’s story. Keep up with Tara here. Pray for Tara.
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