BRAEDEN "SUPERBUB" B~Braeden was diagnosed with stage III, high risk neuroblastoma and opsoclonus-myoclonus syndrome on May 15, 2007, the day before his second birthday. He received six cycles of intense chemotherapy, had surgery to remove the softball size tumor from his abdomen, had high-dose chemotherapy with stem cell transplant, and completed twelve cycles of radiation therapy at Helen DeVos Children's Hospital in Grand Rapids, Michigan. He had clear scans for many months, but relapsed while still on treatment in August, 2008. This time, chemotherapy drugs had no effect on the growing tumors. Surgeons removed the tumors and Bub’s left kidney in October, 2008. We then traveled to U of M in Ann Arbor with the plan to do a targeted radiation treatment. While having scans at U of M, we learned Braeden’s tumors had already reappeared and there were several affected lymph nodes and a spot on his bladder. We were referred to Cincinnati Children’s Hospital so that he could be treated sooner. In December, 2008 Braeden was at our clinic receiving a blood transfusion when his blood pressure began to climb. He was admitted with his remaining kidney failing-the result of the tumor growing so much, so fast. The tumor that was gone in October was fingernail size in November and was fist size in December. More chemo and radiation were tried to shrink the tumor, but in January it became evident that nothing was affecting the cancer any longer and Braeden’s health was failing. He came home under hospice care on February 11, 2009 and received a wonderful wish from the Make-A-Wish Foundation. He rallied and spent a wonderful two months with our family. On April 18, 2009 at 2:27 a.m. he went quietly from our arms into the arms of Jesus. Strong and courageous to the end…..he will be our little Super Hero, always. For Braeden's complete story, visit SuperBub's Super Heroes
why we fight...
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MIGHTY KEAGEN~Keagen is a twin to Kaileigh. They were both born at term and were very healthy and thriving. In the summer of 2008 we became concerned about the size of his little belly and increased diarrhea. After numerous tests and diets, we did a ct scan that showed a 7 by 11 cm tumor behind his lungs, we were taken to The American Family Childrens Hospital in Madison that evening. The next day Keagen underwent surgery to place a broviac line, do a biopsy, and bone marrow aspiration. It was confirmed at that time the Keagen had a very aggressive type of childhood cancer called neuroblastoma. He was stage 4 and was given about a 35% chance of survival. Keagen underwent 6 rounds of chemo therapy, a major surgery that literally took all day. After the surgery he had a lung collapse and complete failure of the right kidney. He also had his adrenal glands removed resulting in him being completely reliant on prescription steroids to just live. During Keagen's surgery they thought that they were able to remove all of the tumor. Scans a month later revealed that there was still cancer in his little body. We opted to go for a stem cell transplant as his only hope of survival. During all of Keagen's treatments he had problems with blood infections, and needed to many transfusions to count. Shortly after Keagen entered into the Stem Cell Transplant he got another of these blood infections but this time it would not seem to go away. Keagen went into complete respiratory failure and spent the last month of his life on a ventilator. He came off a few days before he left us to go home with Jesus, his little lungs had just had to much. We miss him so much, and our hearts will always be broken. Keagen fought cancer with such strength and courage, and i am proud to be called his mom.
You can watch Keagen's slide show.
AUSTIN A~
On April 20 2009, Austin woke up and didn't want to move his right arm. He was rushed to the ER thinking that he had broken it in the middle of the night only to find out 6 hours later that it was either a tumor or an infection. We were rushed to Helen DeVos and admitted under the impression that he had an infection. He had it drained and by 5am on the 21st was back in his room. Six days later we returned home. Within three weeks we were noticing that he didn't want to run and play as much and was having pain when he walked. We came back down for a check up to find that he now had three more spots to worry about- two in his spine and one in his hips. The doctors were sure that it was osteomyelitis, only to find out on May 28 2009, that it was stage 4 neuroblastoma. I was rocked to my core! Austin endured 5 months of chemotherapy and had a stem cell transplant on Nov 11th. By December 31 we saw that 2 spots hadn't responded to the therapy so then he was told that he would have to undergo 12 rounds of radiation. With radiation done we are now undergoing antibody therapy, which we just started on March 1, 2010. I'm hoping all goes well and we can get past this large bump....
On April 20 2009, Austin woke up and didn't want to move his right arm. He was rushed to the ER thinking that he had broken it in the middle of the night only to find out 6 hours later that it was either a tumor or an infection. We were rushed to Helen DeVos and admitted under the impression that he had an infection. He had it drained and by 5am on the 21st was back in his room. Six days later we returned home. Within three weeks we were noticing that he didn't want to run and play as much and was having pain when he walked. We came back down for a check up to find that he now had three more spots to worry about- two in his spine and one in his hips. The doctors were sure that it was osteomyelitis, only to find out on May 28 2009, that it was stage 4 neuroblastoma. I was rocked to my core! Austin endured 5 months of chemotherapy and had a stem cell transplant on Nov 11th. By December 31 we saw that 2 spots hadn't responded to the therapy so then he was told that he would have to undergo 12 rounds of radiation. With radiation done we are now undergoing antibody therapy, which we just started on March 1, 2010. I'm hoping all goes well and we can get past this large bump....
MAX N~Max has been diagnosed with a primitive neuroectodermal tumor (PNET) of the central nervous system (CNS). In other words a malignant brain tumor which has metastasized to his spinal column. This type of cancer is a grade four which means that it is very aggressive and quick growing.
Max's father took Max to ER at MCMC on March 16, 2009 after he had complained of a headache and backache for most of the weekend. MCMC ran some preliminary tests and sent him to DeVos Children's Hospital in Grand Rapids. Max at this point was suffering from brain swelling which impaired motor skills on the right side of his body along with losing his ability to speak. After four days of testing, the doctors told us that Max had cancer (March 19, 2009). The support from the school, the community, family and friends has been very welcomed during this time. I am amazed and truly grateful that we live in such a caring community. Every well wish and positive thought keeps us strong as Max fights this battle. As for Max, he only can grasp as much as a six year old can understand. He knows he is sick and is very frustrated that he is unable to do what any typical six year old can do. He has his moments of sadness but for the most part we can arouse a smile or two out of him each day. The most difficult part of this experience has been not having our family at home all together. Max started the first of his treatment on March 31, 2009 with treatment consisting of chemo, high dose chemo and stem cell rescue, whole body radiation and maintenance chemo. If all goes as planned Max will be able to return to school full time by April, 2010. He is currently undergoing radiation at Devos Children's Hospital (6 weeks of radiation to his brain and spinal canal.) His latest spinal tap came back with suspicious cells that may indicate that the cancer has returned.
BLAKE H~Blake was diagnosed with leukemia (pre B ALL) on July 29, 2008. What a shock we got when the news came in, we thought he just had an ear infection that he was on an antibiotic for. We went camping and noticed that his lymph nodes were swollen and thought we better call the doctor, he may have mono. So as we got an appointment that day we drove there and they wanted to do a blood test so we took him to a lab and had his blood drawn. At 10pm we got a call from our doctor to take him to the Helen DeVos Children’s Hospital right away that he was a very sick little boy. Fear of all kinds went into our heads of what was to come. We had only heard of it mostly on TV. Well the next few days were a blur as they took so many tests and he was high risk because he only had 1/4 of his blood and his bones were full of cancer. Chemo started and he reacted to everything--we all called it Blake's way. His legs hurt so bad we would stay up all night rubbing them. After going home, he had a stroke that would put us back into the hospital for another 10 days and we were worried again. He seemed to come out of that, then his liver was having trouble so we were back for blood products. We spent yet more time in the hospital. Shortly after he got in infection in his back where his spinal tap was, so we spent another 10 days. His cancer is now in remission. It has now been 6 months and things have settled down a bit. We are still having chemo every week and he is starting a new batch this week, along with steroids. We thank God every day for getting us all to the next day and Blake seems to be on his way to a healthy kid. Starting in March most of his chemo will be at home and we will have to go to clinic once a month unless he gets sick. His treatments are supposed to be finished in November of 2011.
ALEX D.~
On July 3, 2008, at the age of 2, our sweet Alex was diagnosed with acute myeloid leukemia, subtype M7. After battling ever so strongly for 14 long months at St. Jude Children's Research Hospital in Memphis, TN, and after enduring countless rounds of chemotherapy, radiation treatments, a bone marrow transplant and a stem cell transplant, Alex left the arms of his Mommy and Daddy and walked into the arms of Jesus. Our commitment to Alex is to continue the fight he so bravely fought, and to bring more awareness and funding to childhood cancer. He fought too long and gave too much for us not to! We are Alex's Warriors! Fight On! Visit Alex's caring bridge page here.
JULIAN A~Julian was a fun little guy. He had a lot of imaginary friends - mainly frogs, alligators and sharks. He is the third of four brothers and was the peacemaker, always getting upset when his brothers fought and argued. He had an awesome smile with beautiful dimples. Julian was not quite 4 when his parents took him to the doctor for awful headaches and nausea. A golf ball sized tumor was found in the back of his brain. It was successfully removed by surgery and was diagnosed 3 days later as a malignant childhood tumor called medulloblastoma. He spent less than 24 hours in the Pediatric ICU and only a week in the hospital after surgery before he got to go home. After a few rounds of chemo, not even half way through the clinical trial, the cancer came back with a vengeance. His family went on his Make-A-Wish trip to Disney, where he had his first seizure, and it was all down hill from there. He beat cancer in Heaven on January 19, 2008, but not after fighting for every breath. Julian liked to be called King Julian, and his kingdom was Julian's World. He touched a lot of people and gave several of them hope. His amazing spirit and his love for music, dancing and God made him who he was – a little dancing king!
LAYLA B~On Thursday June 21, 2007, Layla was taken to the ER for abdominal pain that had started the day before. By then end of the day they told us she had a mass on her right kidney and flew us to Phoenix. By Saturday she was having surgery to remove the tumor, and by Sunday we learned about neuroblastoma. She was diagnosed with stage lll high risk neuroblastoma. She completed all of the chemo, 2 bone marrow transplants and radiation and went into remission. She relapsed within 10 months in January of '09. More chemo, surgery and radiation with little success. Neuroblastoma took Layla on January 25th, 2010 at 9:30 p.m. She continues to be an inspiration to anyone that knew her. She was amazing and strong and hard headed and caring and she gave so much to the people that loved her. But she was still taken because there is not enough research.
Brendan H~On September 29, 2008 Brendan was diagnosed with a brain tumor. Brendan had been experiencing excruciating headaches and vomiting and after several doctor visits that didn't help, we decided to take him into the ER. He couldn't keep any meds down and his headache was beyond control. After the diagnosis, we were then transferred via ambulance to DeVos Children's Hospital. His tumor was completely removed and spinal fluid was clear of cancer. The tumor was a medulloblastomoa. Brendan finished a 6 week course of cranio-spinal radiation with chemo and began nine rounds of intense chemotherapy that was due to end in November or December, 2009. On October 13, 2009, we discovered that Brendan's cancer was back. We began a new chemotherapy treatment which in January we discovered wasn't helping. At that time we began more radiation with chemo in hopes of stopping the spread of his disease.
Brendan has been home since January 1st after what was approx a 3 month admission at "Camp DeVos". During that stay Brendan became septic resulting from an infection in his port. After the most amazing display of strength and determination while on a respirator and basically in a coma for six days, he recovered amazingly well. Many didn't think he'd leave the PICU alive.
In March it appeared as if things were improving on his scans, but on April 9, 2010, we found out that Brendan's cancer has continued to spread and that there is very little at this point that our team of doctors and staff could do to further fight/treat Brendan's tumor growth. We are all home and enjoying every moment we have together the best we can. While Brendan is in a lot of pain day and night he remains mostly a very happy little boy, one who is happy to be alive and doesn't want that to change.
Brendan sees the glass half full - always. He told us just a few hours after learning of his potential death, "I'm not done fighting and if we do all we can do and it doesn't work, well that will be ok too". Such grace from a 7 year old facing death square in the eyes. Brenner's dad shares, "We all love you with every bit of our hearts Brendan. Why we fight is so simple...because they are our children and because if you love, you fight."
Matthew R~Matthew is a fun loving, caring, and inspiring boy who will be seven. Matthew is also battling cancer for the second time in his young life. He was diagnosed in August, 2006, with Wilms tumor, kidney cancer, stage 4. He also had just under 20 small tumors in his lungs. He endured a 6 hour surgery to remove a kidney & a tumor that was about the size of a cantaloupe. He also had radiation, chemotherapy and numerous pokes and scans. Matthew went into remission in early 2007. We started to get back to a "normal" life.
Fifteen months later, during a routine scan in April, 2008, it was discovered that Matthew had relapsed and had a rapid growing baseball sized tumor in his liver. He had a 7 hour surgery to remove 60% of his liver and has started chemotherapy. Everything was different this time around. The high dosage chemo was all inpatient, so every 3 weeks we entered the hospital for 4-6 days for treatment. The treatment plan also called for a bone marrow transplant during which time Matthew was in the hospital for a month and then home in isolation for another 2 1/2 months. A relapse of Wilms tumor is rare, so everything is somewhat experimental at this point.
We are now 1 year and almost 8 months out from his transplant date (Aug. 2008).
The further we get out from that date the better we start to feel, but we know we have a long way to go. Matthew also has neurofibromatosis, which by its very definition involves growth of tumors. We're just praying from here on
out that they are benign and the effects, minimal. Every 3 months at scan time, our hearts stop but we fight because he continues to fight and God has given us this time with our incredible boy and we want to cherish every single moment of it.
Our Oncologist is at the top of his field, but science tells him our little boy has a 50% chance of being cured at the 5 year mark. As Christians we are faithful. As parents we are terrified.
Thank you for your love and support and especially your prayers. You can follow Matthew's updates here.
Donovan B~
Donnie was diagnosed with stage IV neuroblastoma May 9, 2007, at 17 months old. It had spread all over his body including his bone marrow. The diagnosis was made by the eye doctor when a small bruise turned into a glassy eye and upon exam and biopsy, a tumor was found behind his eye. After CT scans and bone marrow biopsy it was found to be neuroblastoma on his orbits, spine, jaw, bone marrow, hip, and pelvis. After extensive treatment--9 rounds of chemo, stem cell harvest, surgery to remove adrenal gland tumor, stem cell transplant, radiation and accutane treatment(not to mention the many ER and hospital visits)--he has been clean for 2 years now. We still have to consider relapse, the possibility is always going to be there so we need a cure!! The doctors tell us if he relapses there is not much that can be done so WE NEED A CURE for all the children diagnosed with ANY childhood cancer!
Jessica R~Jessica led an extremely normal childhood until April 4, 2006. On this day, at the age of 15, she experienced something extremely abnormal, a grand mal seizure. On May 25, 2006, an MRI was performed which showed a lesion in the left lateral ventricle of her brain. Resection surgery by craniotomy was performed on June 8, 2006-- two days after her 16th birthday. Eighty to 90 percent of the tumor was removed and pathology revealed it to be malignant: grade 3 anaplastic astrocytoma.
Jessica endured countless treatments, including radiation and chemotherapy, while continuing to struggle with grand mal seizures. In February of 2007, a new lesion was found on her spine; and in May of 2007, doctors discovered a new mass behind her brain stem. From that point, Jessica’s health declined quickly, and she was taken home under the care of hospice. Jessica earned her wings on June 9, 2007--three days after her 17th birthday, surrounded by her mother and father; her brother, Jake; her boyfriend, Joel; and her kitties.
Jessica was a gifted artist and left behind an incredible legacy of writings, artwork, and photography. The family hopes to someday publish a book of her works. Many of her pieces are shared on her caring bridge site.
Clayton K~
In June of 2009 Clayton was diagnosed as having stage 3, high risk neuroblastoma. He had a tumor about the size of a softball in his belly between his kidney and bladder. Clayton went through six months of the most intense chemo therapy they could give a child. It was determined that after that six months of treatment that the tumor had stopped shrinking and that the only option was to remove it. Clayton endured an 11 1/2 hour surgery with three different surgeons operating on him. After surgery he spent over a week in ICU recovering from the surgery. Because of the size of the tumor and how intense the surgery was there was some concern that Clayton might not walk again. It took him three months but as of today Clayton not only walks but runs, jumps and does everything a normal 3 year old boy can do.
After all the tests were done on his tumor it was determined that the tumor contained no signs what so ever of cancer!!!
Clayton has been cancer free for several months and well on his way to a full recovery and a "normal" life.
In June of 2009 Clayton was diagnosed as having stage 3, high risk neuroblastoma. He had a tumor about the size of a softball in his belly between his kidney and bladder. Clayton went through six months of the most intense chemo therapy they could give a child. It was determined that after that six months of treatment that the tumor had stopped shrinking and that the only option was to remove it. Clayton endured an 11 1/2 hour surgery with three different surgeons operating on him. After surgery he spent over a week in ICU recovering from the surgery. Because of the size of the tumor and how intense the surgery was there was some concern that Clayton might not walk again. It took him three months but as of today Clayton not only walks but runs, jumps and does everything a normal 3 year old boy can do.
After all the tests were done on his tumor it was determined that the tumor contained no signs what so ever of cancer!!!
Clayton has been cancer free for several months and well on his way to a full recovery and a "normal" life.
Luci N~Luci was diagnosed with acute lymphoblastic leukemia on November 26, 2007. She had been sick with a cough and fever for three weeks prior. I took her to the doctor three times and even to the dentist, with no answers, except it will run its course. Over Thanksgiving break she became extremely pale, very tired, and weak. The following Monday I took her to the doctor for blood work. By 7pm that night we were on our way to DeVos Children's Hospital, thinking it would be a quick fix. Boy were we wrong! They told us that night that she most likely had leukemia. Her blood levels were extremely low with her hemoglobin at 2, instead of 12, and her platelets at 10,000 instead of 100,000. Her liver and spleen were enlarged into her stomach region and she was in the beginning stages of CHF. She received many blood and platelet transfusions over the next few days. She was officially diagnosed on Tuesday with acute lymphoblastic leukemia (A.L.L.) and on Thursday received her first (of many) bone marrow biopsy, lumbar puncture and chemo treatment. Her bone marrow was 90% leukemia after her first biopsy. We stayed at Devos for two weeks, went home for two days and went back with a fever and UTI for another week. Luci's journey continued with many bumps and detours for the entire 2 1/2 years as is the protocol for A.L.L. We are so very happy to say that on March 11, 2010 Luci received her last chemo injection and on March 27, 2010, upon returning from her Make-A-Wish trip to Disney, she swallowed her very last chemo pill. Our mission during that time was to help out daughter fight as hard as she could. Now that she won her fight, we will continue fighting for all of the other children battling cancer.
Ryan T~Ryan is a very sweet loving little boy. He loves to go to school and spend time with his friends. He also likes to play with his little brother, Andrew. They are best buds. Ryan had a Scan on 2/2/09 due to him vomiting and being tired for 2 months. The scan showed that Ryan had a brain tumor. His tumor was removed on 2/6/09 and Ryan went through 8 rounds of chemo at Helen DeVos Children's Hospital in Grand Rapids, MI and is currently in remission. Ryan's tumor is very rare and aggressive so we are always praying that his tumor will never come back. The name of the tumor is Choroid Plexus Carcinoma. Ryan loves Animals! He spends his summers hunting for turtles, frogs, worms, caterpillars. He also loves to go fishing and hunting. Ryan is a fighter and will come out of this a survivor. He is a jokester and loves to make everyone laugh. He is our pride and joy and we cherish every moment we have with him. He loves his little brother, Andrew. They spend all their free time together and miss each other whenever Ryan has to stay overnight in the hospital.
Ryan's lat MRI was in January 2010 and was clear. He will get MRIs every 3 months. Please continue to pray that Ryan stays cancer free!!
Alexander "Mr. Man" B~On my 2 year birthday, 13 November 2009 I started to walk funny like a drunken man, had a head tilt, preferred my left hand, had intentional tremors. As time passed, I had trouble eating, was crabby all the time, threw up almost every night and when asked where I hurt I pointed to my head. On 18 December 2009, I was diagnosed with a brain tumor. I had brain surgery on 21 December 2009. They removed all of the tumor, it was the size of a lemon. A couple days later I was told the tumor is medulloblastoma, a cancerous tumor. I would need chemotherapy, 3 rounds of induction chemotherapy then 3 rounds of consolidation chemotherapy (high dose chemo with stem cell rescue). They didn't want to use radiation because it can cause brain damage for kids under 3 years old. My spinal fluid was clear and there were not any tumors on my spine. I went through the induction phase of chemotherapy easily. I didn't throw up once. It was like I was immune to chemo....little did I know! My blood counts went down after chemo and I always got a fever 10 days after. I have received several blood and platelet transfusions. I slowly started losing weight, I didn't feel like eating.
I got an MRI after my first 3 rounds of chemo. It showed 5 tumors on my spine. My spinal fluid was still clear. This really baffled the doctors....gotta love it when you baffle the doctors! We decided to continue with the high dose chemo plus add intrathecal chemo (chemo given directly to my spinal fluid) every week. We did this for 5 weeks then I got another MRI. The MRI showed that the tumors are still growing and now I have a 9mm size tumor on my brain again. Chemotherapy is NOT working. We are stopping all chemo and will try radiation. Radiation is my last hope. Radiation for me, since I'm only 2 years old will not be good. The long term side effects are not good. But mommy and daddy say they want me with them no matter what the damage is.
So....that's where we are now....waiting to start the next phase of fighting.
Ty M~Ty Jacob was diagnosed in May 2008 with stage 4 neuroblastoma. He was only 16 months old at the time and has since endured seven rounds of high dose chemotherapy, an autogolous bone marrow/stem cell transplant, 27 rounds of radiation and had surgery to have his tumor removed. In addition, he has countless blood and platelet transfusions, countless MIBG and CT scams, x-rays, and numerous bone marrow aspirates and biopsies.
Ty is our little fighter and has never shown any signs of slowing down, even throughout this entire ordeal. He is so strong and continues to "power through it" with a smile on his face. We are blessed to have such a wonderful, loving, and active little boy and know he will beat this cancer!
Ty is now 3 years old and has been receiving his treatment through Stanford hospital in Palo Alto, California but due to the clinical study closing, we are now flying coast to coast, from California to New York to receive the 3F8 antibody treatment at Sloan Kettering Cancer Center.
As of April 7,2010, Ty is officially "no evidence of disease" and will finish the 3F8 protocol in March 2011. Please keep him in your prayers so he can remain healthy and happy. You can follow Ty's story here.