When I was pregnant with Zane, we knew there was something wrong, but we didn’t realize to what extent. I had very high fluid during my pregnancy which indicated that he was not swallowing. He also had a very large head so they guesstimated he would weigh 15 pounds which he didn’t! Thank God! He was born at 11 pounds 5 ounces and we were relieved about that! After he was born he was not swallowing well, and couldn’t drink enough from a bottle to gain weight on his own. They suspected that something genetic might be wrong with him. We spent a month in our first NICU trying to feed him until we consented to getting him a G-tube (where he eats through a tube to his stomach). When we were transferred to the Children’s Hospital of Wisconsin, he was greeted by many, many specialists who kept us very busy playing mystery diagnosis. The geneticists sent tests for three different syndromes, and one of those was Beckwith Weiderman Syndrome. Some signs of Beckwith Weiderman matched our son, but the geneticist wasn’t convinced enough to be certain. She ordered an ultrasound of his belly to check for enlarged organs because that would convince her he has it, which is what the rest of the genetics team thought he had. When they did the ultrasound there were no enlarged organs, but instead they found a mass in the center of Zane’s abdomen. That surprised EVERYONE! We got the news, and to be honest, I never really cried. I worried a lot. I think I was having a heart attack for a week straight, while they sent him through all the scans to check what the mass was, and if it had spread. Each scan he had to be put under general anesthesia every single time. Our son has a lot of breathing issues and a floppy larynx and trachea, so general anesthesia was scary, and the fact he possibly had cancer, and that it had possibly spread was even scarier.
I felt bad for my baby because of how hard this would be for him. We loved him so much and I don’t think any parent can be told, “your child has cancer” and not feel like, “what if I lose him?”
Zane had the prettiest red hair color, and I just wanted so bad to get him out of the NICU for one day so I could get some cute photos of him taken with that reddish hair, before chemo would take that all away. When we found out he had cancer, I was preparing myself to stay there for a year or more if I had to, and make it part of our lifestyle. We got extremely lucky though. I cannot even stress how grateful we are to have all the doctors in our son’s life. We have had exceptional care from the very beginning. They found his tumor when he was one month old. They removed it a week later. Zane’s tumor was nestled snuggly between his aorta and vena cava (both largest vein and artery in your whole body coming directly off your heart). If our doctors did not find that mass he would have spontaneously died and we would have been shocked. The tumor would have just grown and grown until it cut off circulation to those two major vessels. They removed it and we waited 5 hours in the waiting room on the edge of our seats, while they used teeny tiny instruments to remove a mass next to his most vital vessels. I kept wondering, “what if they don’t get the whole tumor out?” Well our prayers were answered and the whole tumor was removed safely with no complications. Zane spent about a week in a coma like state. He was on a ventilator and multiple machines and kept highly sedated while recovering. That was very hard to see, and I could not wait for the day to hold him in my arms again, and get him off all of the machines. We sent his tumor to pathology and it was confirmed – neuroblastoma. He had the less aggressive strain and said he was only a stage I or low risk. That was the very best news any mom could hear. Since he had neuroblastoma they were tipped off to another genetic disorder to test, and that one ended up being a winner. We found out a few months later that Zane had a spontaneously mutated gene and had Costello Syndrome. Costello Syndrome affects 200-400 people in the entire world (1:24 million). It puts him at a 17% increased risk of cancer, and he is 6th Costello to get neuroblastoma. He is also at an 85% risk of having a heart problem. At the time he didn’t, but a few months later he had an enlarged heart.
Zane has trouble breathing and he cannot eat by mouth. In fact now he eats through a GJ tube (to his intestines), and we found out that he is mostly blind (he can only see light that we know of). I love this little boy; he is the cutest little doll you ever did see. His body is unproportional. His height in the 2% or less for his age, his head in the 97% and up for his age. So he looks like a little person with a very big head. Zane leaves an impression everywhere he goes to everyone who hears his story. He inspires people to be more grateful for the small things in their lives; he inspires them to want to help other people, mostly kids. He inspires them to feel a little less sorry for themselves and their situation. He is a hero just by being himself. He has a big purpose on this earth; this rare bear was sent to us with a purpose of changing the lives of many people. Zane beat neuroblastoma, but it doesn’t mean he won’t get it again. He is also at a very high risk for rhabdosarcoma, and a smaller risk for bladder carcinoma.
Right now he is being scanned every three months, and every single one gives me a “hold your breath” kind of heart attack for a few days, while I hope and pray that we don’t get an aggressive cancer next time.
Zane had a very low risk cancer, had a life saving operation to remove his tumor, never had to do chemo or radiation and we could not be happier. When they tell us about a new diagnosis he has for this or that, we always just remember that we could have lost him, and then all the work it takes, and the worry, and the heart ache, just does not matter.
We are just so grateful to have Zane in our lives.
Piper Wilhide was born on September 17th, 2012. She was a very happy baby with a head full of hair. Just shy of 4 weeks old, Piper was taken to her Pediatrician by her mother because her “gut feeling” told her that something was wrong with her baby. She had no fever, no rash, no cough, no symptoms other than getting “sweaty” sometimes. In fact, Piper was just checked out at two and a half weeks old and the Pediatrician had reported that she was a “perfect baby!” On October 16, 2012, at approximately 8:45 a.m., the doctor noticed that her heart rate was fast at 190, so he ordered Piper to the ER to get an EKG done. Her EKG came back normal, but the Pediatrician cardiologist was not going to be there until the following day to see Piper and review the results. Therefore, the adult cardiologist that read her EKG decided to send Piper to the nearest specialist almost an hour away to get it taken care of THAT day. Piper arrived at a Heart Institute where another EKG was done. Again, the same results, everything was fine. Piper and her parents were packing up and getting ready to leave the facility when last minute the doctor ordered an ultrasound. He wanted to confirm that nothing was going on with her heart. The ultrasound tech found no problems and the doctor came in to review the results. As he was reviewing the images, the cardiologist spotted something…a possible cyst! The “cyst” was very large and was sandwiched in between her heart and spine. Piper was then sent to the hospital to have a CT done to confirm that it was a cyst and it would have to be drained. Piper was admitted that night because it was so late in the day and the test would take place on October 17, 2012. This is the day that changed everything. The CT was done and it was confirmed, Piper’s parents were notified that it was not a cyst, in fact, it was every parent’s worst nightmare. Piper. Has. Cancer. Several tests and images took place over a couple week period and she was diagnosed with neuroblastoma, stage III, intermediate risk. She must undergo 4 rounds of chemotherapy and surgery to follow. Chemotherapy will more than likely take place even after surgery once the tumor/most of the tumor is removed.
Piper will start cycle 3 on December the 7th. She will be administered her chemo over three-four days in the hospital through her central line. She remains a brave little hero and her parents could not be any more proud of her! TEAM PIPER, WE BELIEVE!!!!
You can follow Piper’s updates on Facebook: www.facebook.com/pages/Prayers-For-Piper-Wilhide/164237357033417?fref=ts
Mia just celebrated her 2nd birthday. Her little bald head and central line are the only visible signs that she’s fighting for her life. Behind her smile and sweet spirit, her life revolves around cancer. In August 2011, at just 16 months old, she began a life of chemotherapy, surgeries, radiation & hospital stays.
A low-grade fever, less frequent wet diapers and fatigue were the only signs that something was up. Just a few hours after a visit to the pediatric clinic, she was introduced to the world of cancer. The diagnosis was stage IV high risk neuroblastoma (with the cancer spreading to her bone marrow, legs, spine and chest) and chemo began immediately. The treatment has been the same as many: six rounds of chemo, several surgeries, stem cell transplant & radiation – and antibody treatment to come.
Mia’s cancer has responded amazingly to treatment. After two rounds of chemo the tumor had shrunk by 54% and every last spot was gone, the next three rounds were just as effective. By the time Mia was ready for surgery, the grapefruit sized tumor was down to only 25% and was what remained was 95% necrotic. The surgeons were amazed in the OR when the entire tumor peeled away with ease, sparing her kidney and spleen. One more round of chemo followed surgery before Mia was scanned again and given her No Evidence of Disease status. February 6th was a glorious day.
Once declared NED, the fight continued with a stem cell transplant. She was randomized for only one. The chemo was fierce. Mia suffered the unavoidable mucositis, loss of appetite, nausea and chose to simply lay and exist for the following week. Her neutrophils came in quick and she began to improve. Her oxygen level was the only complication (possibly caused by her pain pump) but a small amount of oxygen gave her the boost she needed. She went home only 15 days after.
Since March she has completed 12 doses of radiation and is now in the middle of her fifth set of scans. If the results offer no surprises, Mia will begin her last phase of treatment on May 7th – six months of antibody treatment. A celebration is on the horizon and each day is one day closer.
There will never be a reason or an explanation as to why this is Mia’s path. Instead, she chooses to smile and live in the moment. She’ll continue to inspire others and fight any obstacle in her way. She’s a Princes Warrior!
*Read Mia’s story in her Caringbridge Journal or on Facebook thru her “notes”
Featured Little Hero Brennan Scurlock
On March 12, 2011, Brennan began to show signs of something being very wrong. He started running fevers, lasting 7 days straight and as soon as it would break with meds, it was back again full force. Slowly, his appetite decreased as well. We went to the Dr. on March 16th, and were told that Brennan was just teething, and to keep giving him meds anytime his temperature spiked. He weighted 22.7 lbs that day, at 10 months old. By March 31st, Brennan had progressively gotten worse. He was no longer eating at all, and had been sleeping continuously for 3 days. I took him back to his pediatrician who did some blood work, and tested his urine. His blood came back showing signs of infection, yet besides the symptoms we had been having, Brennan appeared “ok” from the outside. We were referred to out to the Texas Children’s Hospital. Over the next 24 hours we would learn that our sweet 10 month old little boy, had cancer. Brennan was “officially” diagnosed on April 8, 2011 with stage IV high risk neuroblastoma.
Over the next 10 months he received 5 cycles of chemotherapy, tumor removal surgery, stem cell harvest/transplant, and 2 cycles of radiation. We were to begin Brennan’s last phase of treatment, and were so close to potential remission, when we received more bad news on January 3, 2012. We were told Brennan was no longer eliglible at Texas Children’s for antibody therapy, and we were to do accutane only. I began seeking a second opinion, waiting on insurance approval to go to NYC for antibody therapy, when Brennan began to show signs of something wrong again. After 2 ER trips, and once again, NO eating, we found out Brennan’s original tumor has returned. 6 weeks ago his tumor was on it’s way to being gone for good. But now it’s bigger than ever. It has grown tremendously fast and can not be removed. He had a biopsy done, and Drs had to fix the bowel obstruction it had caused. We’re now being told that the pathology is looking as though it has changed. Part of his biopsy shows the neuroblastoma the same as we know it. But there are portions showing that his tumor has changed to the more aggressive, fast growing kind. If that is the case, more often times than not, the tumor will not respond anymore to treatment. This is what we are facing.
We’re asking for prayers, because right now prayers and God’s healing are all we have. Brennan has only been fighting for 10 months, we are not ready to stop now.
On July 23, 2011 our world SUDDENLY changed, my son Liam was diagnosed with stage IV neuroblastoma. We had finally achieved the “American Dream” in Raymondville, Missouri. We had three happy and healthy children, summer was in full swing, and we finally had all of the love and support of our families within spitting distance from us. Liam had not been feeling well, but like any normal parent we thought it was due to the heat. Then the night of the 22nd Greg went to hug Liam goodnight and he gasped in pain and threw-up. We immediately rushed him to the ER. They said he needed to poop and that he had worms. So we went home. But the next morning he was no better and was also running a fever, so back to the ER we went. A CT scan was ordered immediately. The next thing we knew the doctor came in and gave us the worst news. Liam had a massive tumor in his belly region, and he was in first stages of liver failure. The doctor then said that Liam was going to be rushed to St Louis Children’s Hospital in St Louis, Missouri. It took a minute for it to sink in, then WHAM! It hit! All I could think about was “just save my son!” The tears came flowing, and it took everything in me to catch my breath. Once in the hospital all of the tests were started.
He had to go in for a biopsy of the tumor, a bone marrow biopsy, and have a central line put in his chest. Then the wait began for all of the tests to come back. Waiting was one of the hardest things I have ever had to do. I can honestly say the four days it took seemed like an eternity. His belly just kept growing! Liam wasn’t being treated yet, so it felt like we were watching him die right in front of us. Finally the results came in. It was confirmed – he had stage IV neuroblastoma, and a minimum of 18 months of treatments ahead, IF he makes it. We were then told the tumor grew out of his adrenal gland, pushed out his liver, wrapped around his aorta, then split his diaphragm, and settled on the bottom of his lungs. Due to the size of his tumor and where it was, it was creating a blister effect causing fluid in his lungs. The next thing we knew Liam was being sent down to the PICU and on life support. Those two weeks were the longest two weeks, and full of roller coaster ups and downs. We had to watch our son crash, and turn a horrible color grey, watch them bring him back, and then wait for Liam to decide to fight. He rested and regained strength enough that the PICU doctors wanted to take his breathing tube out. We were a nervous wreck as we watched and prayed. Finally, Liam was breathing on his own.
Meanwhile, while all this was going on, our other two children, Natasha (eleven years old) and Natalie (five years old), were still in Raymondville with our Grandma. Once we knew how long of a fight Liam was going to have, we had to make a difficult decision to move in with my parents, since they are closer than the three hours we would have had to do back and forth to the hospital.
About 2 weeks later, Liam got to come home for 48 hours. The girls had no idea! They jumped off the bus and went running for their brother. Finally, our family was whole again, even if for only 48 hours.
Liam will get admitted every 22 days for chemo, and has to stay in for five days at a time. He just finished round five. The tumor is still so big and still wrapped around his aorta, so the doctors want to give him another round of chemo before doing surgery. We were told today that he has a 50/50 chance of coming out of the surgery due to the size of the tumor, and how it is still wrapped around all of his main veins in his chest.
But I know he will beat this monster, it just takes the faith!
Wes was born two weeks early on December 21, 2005. He is a fun-loving, intelligent, and compassionate young boy with faith like no other. He enjoys soldiers, Star Wars, and anything involving animals/bugs. He became a big brother on March 13th and a cancer warrior on June 24, 2011, when he was diagnosed with stage 3/stage 4 high risk neuroblastoma cancer. Shortly after graduating preschool in May, Wes began to feel severe abdominal pain on and off, alongside a minimal appetite. He began to look extremely thin. He was taken to the doctor on June 9th in which they told us that it was constipation. Wes was treated for constipation for two weeks before he was taken back to the doctor on June 24th, with still no change. Something was wrong. The doctor began to restate the same previous prognosis, but we informed him that we could feel a small hardness under his rib. The doctor called for an x-ray, thinking it could be an enlarged spleen. Shortly after the test was done, we received a phone call from the doctor and he wanted us to go to Children’s Hospital of King’s Daughter’s emergency room, as something was seen on the x-ray. At that moment our lives had changed forever. After doing a CT scan there, they discovered a large mass taking up most of the left side of his abdomen, which was pressing against many organs, causing him to feel full all the time. At the time of diagnosis the mass was too large to remove. Wes remained in the hospital over the weekend waiting for more tests to be done the following Monday. Wes underwent a bone scan which showed that his bones were clear of disease. That Tuesday he experienced surgery for his first time. A biopsy and bone marrow were done to find out details on the mass. At the same time a CVL/central line was placed in one of his main veins by his heart for easier access. The following day the monster had a name. Neuroblastoma. This was the disease that was wreaking havoc on our five year old boy. Soft tissue was also found on one of his lymph nodes that they are watching closely. Chemotherapy began that Friday. For the following two weeks, Wes continued to spike random fevers overnight, causing him to have to extend his stay at CHKD. He was soon placed on TPN or nutrition through the line, as he was steadily losing weight from not eating. July 15, 2011, a miracle happened. The fevers stopped and Wes got to go home. In addition, another CT scan was done to ensure there was not any fungus in his body causing the fevers. We were told by the oncologist that normally they expect to have seen the tumor somewhat bigger after their initial diagnosis, due to the fact that it had been less than two weeks since his start of treatment. His on the other hand, was stabilized! Wes continued on TPN at home, but soon his appetite returned greater than ever. Wes returns to CHKD for another five day stay of chemotherapy in hopes it will shrink the mass so that surgery may be possible. He will have six total rounds of chemotherapy, possible surgery, radiation, and a harvesting of cells that will last for a year to a year and a half. Every 21 days he will be admitted to CHKD for 5-6 days of therapy. This September will be very hard as Wes would be starting his first year of kindergarten. However, due to his illness he will have to have a tutor at home, and will not get to enjoy the interaction with other children, or riding the bus like so many look forward to. Wes is a strong young boy with few complaints. Even though his life has drastically changed, his faith, heart, and spirits have not.
Follow Wes’s updates: www.caringbridge.com/visit/wespak
Kendall was born on August 5th, 2010. We were told that we had a healthy baby and sent on our way. I knew from the start that something was not right with her. She did not look normal to me and was extremely fussy. Finally, at her two month checkup, the pediatrician agreed that she needed to see a GI doctor for her reflux and fussiness. We were able to get in with the GI doctor the following week. As soon as we got there she rushed us down to radiology and the first mass was discovered. We underwent testing all week in the hospital with Kendall. We were shuffled from doctor to doctor and eventually they told us she most likely had cancer, and would need a biopsy. The following week Kendall underwent her 1st surgery. The tumor in her abdomen was found to be inoperable. They took out a small amount and we were later told it was not cancer. Meanwhile, her doctors suspected something else was wrong, besides the tumor in her abdomen. After undergoing more tests, the doctors found five more tumors in her spinal column, one in her cervical and four in her lumbar. Everyone assumed she had neurofibromatosis (NF) developed by her own genetic mutation and not passed on from us. It has since been confirmed by genetic tests. We were then referred on to Cincinnati Children’s Hospital, which has a NF clinic. Once we got there Kendall underwent more and more testing. The mass in her abdomen was once again suspected to be cancer. She underwent her 2nd surgery to debulk and biopsy the tumor. Once again, only a very small amount was able to be removed for biopsy. We were told five different times it was and then wasn’t cancer. The mass at that point was putting too much pressure on her kidneys, and was causing them too much stress. Because of that we did a 2nd MIBG, which revealed a big mass, and it was on the posterior wall of her bladder, and was in fact stage III ganglioneuroblastoma.
Kendall started chemo the week after Christmas. She had four rounds of chemo. After rescanning, we found that the chemo had done nothing for the main mass, and we would have to start thinking about surgery. On May 12, 2011 Kendall underwent a nine hour surgery where she had to have her bladder removed. Luckily, the surgeon was able to save her uterus. We are currently still in the hospital recovering with a lot of pain management issues. They were able to remove 80% of the masses in her abdomen. We are waiting on pathology results to show us how much the cancer had spread to other areas of the tumor. There still is a chance she may have to undergo more chemo or radiation. The tumor in her cervical spine has grown enough that it is displacing her spinal cord. There are also two new tumors in both of her legs, as well as one in her right shoulder area.
After her battle with cancer, she still has all of the challenges ahead of her that exist with NF. We will have to get MRIs frequently to assess for new tumors and growth of the ones in her spine. If the ones in her spine start to compress, we will have to remove parts of them. She also faces other challenges like scoliosis, learning disabilities, bone abnormalities, and chronic pain.
There currently is no treatment to shrink tumors from NF. The only thing they can do is surgically remove them, which in most cases can have devastating effects. Kendall’s tumors will grow back; it is just a matter of how fast and how bad.
Kendall has taught our family the joy of today. We no longer worry about what lies ahead for any of us in the future. It can be too scary and overwhelming. We take joy in the smiles we see on Kendall’s face and know that she was born a fighter. She inspires me to fight for her and has opened me up to a world that I never knew existed. Through Kendall, I have gained an entire network of friends, most of which I have never even met face to face. We continue to trust in God’s plan for her and know that she was born with a purpose. As long as Kendall is here, we will give her the best care possible and fill her life with as much joy as we can.
Follow Kendall’s updates: www.caringbridge.org/visit/kendallreeve
In July of 2008, at the age of 21 months, Trey was diagnosed with stage IV neuroblastoma. It began as a tumor on his left adrenal gland, but had metastasized to another tumor behind his right eye. It also spread to his bone marrow.
His treatment was to be five to six 21-28 day cycles of chemo, stem cell harvesting, surgery, stem cell transplant, radiation, and antibody therapy. His chances at diagnosis were 30-50% survival.
On October 27, 2008, the day after Trey’s 2nd birthday, he began cycle five of chemo. He responded fairly well, and he was ready for surgery. The goal was to remove the bulk of the main tumor in his abdomen, which was done. But since some of the tumor had been intertwined with the blood vessels, the Dr. could not remove it all. So Trey went on to cycle six of chemo.
On Christmas Eve of 2008, Trey received his 1st stem cell transplant, and he did so amazing, he was sent home just 20 days later! Trey kept his spirit and kept on fighting. He started radiation on March 9, 2009 and that went until April 3, 2009. During that time, he stayed at home because had his good days and his bad. We will never forget the day when Trey’s 1st set of post-transplant scans and MIBG results came back clear. He was in remission!
Trey completed all six cycles of antibody therapy and got to go home for a bit. He wanted to go to the zoo, the Renaissance Fair, the park, amusement park and just be around his family and friends. He was enjoying just being a kid, and getting a break away from cancer.
In August of 2009 Trey ran for the 1st time, and all the transplant precautions were lifted. It was definitely a milestone for all of us! We tried to get back to normal as much as we could. But on September 10, 2009 Trey was placed in the PICU with a gram negative blood infection and a 50% chance of survival. Antibiotics were started and a week later our little fighter was sent home. He was doing great and we took him to Disney World!
Trey turned three years old, and he was still brave, strong and cancer free. Every three months we went in for scans and every three months they scans were clean. Finally his scans graduated to every six months, and he was set to have a scan in May of 2011.
On March 16, 2011 Trey spiked a fever of 105 degrees. It wouldn’t go below 102, and that lasted for the next four days. We kept an eye on him, but on March 20, 2011 he became unresponsive and he was air lifted to CHOP. After tests and scans were done, they revealed that Trey had a brain bleed and an aneurism. His blood pressure dropped to 38/14. Further scans were done and the results were awful: Trey has relapsed in the brain.
As far as medicine goes – there may be no cure. While radiation could be a possibility since the recurrence is on the other side of his head from the tumor Trey had behind his eye originally, the reality is that the cancer will grow faster than he can heal from the surgery – making radiation useless against the disease. A series of tests will be done to see if there are tumors anywhere else in his body. Once all that is complete they will have a better picture as to what the days ahead will bring.
We all will be at CHOP indefinitely. We are asking for your support.
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