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Sierra’s Story | The Sierra Rayn Foundation

Sierra’s Story

Sierra Rayn Chamblee was born on April 25, 2008. At 21 months old, she was diagnosed with Stage IV neuroblastoma. The last 11 months of her life consisted of chemotherapy, surgery, multiple blood transfusions, scans, pneumonia, blood infections, a ventilator and a bone marrow harvest. Her parents, Charles & Gen Chamblee, published her progress on Facebook. On November 23, 2010 ~ the miracle, the beauty, the amazing fighter—gained her wings.

~The Beginning ~

Sierra Rayn was born a fighter on April 25, 2008 at 3 lbs 13.8 oz. She was seven weeks premature, and had a few complications after birth. This resulted in her being placed on a ventilator for four days, needing two chest tubes, unable to maintain her temperature, or her blood pressure. However, within three weeks, Sierra came home.

Our little girl was a healthy child. She was tiny, but never had any major issues. She loved to eat; in fact she could eat more than her three year-old brother at times. She loved to be held and had the most adorable, cheesy smile anyone could imagine. Everyone that met her fell completely in love with her.

Sierra had gone in for her 18 month check up and her doctor said she was healthy as could be. She was growing great and developing just fine. Her belly had always been a bit big, and none of us put much thought to it because most toddlers are not proportioned, and have bellies. It wasn’t until she was 21 months old that we started to notice things more and symptoms appeared. Sierra started to constantly vomit, so we called her doctor. He advised us not to feed her, just hydrate her, and it should go away in a few days. It sounded like a stomach bug going around. So we did just that. She kept wanting to eat, but we didn’t let her for 24 hours, and boy was that a nightmare in itself! We had to tell our little garbage disposal that she could not eat! Once she finally ate though, she was fine for two days. Then all of a sudden, on the third day, she started vomiting everything up again. She could not even keep water down. We knew that a stomach bug would not have gone away and came back like that. Around that same time, Sierra’s aunt also mentioned that her stomach looked distended. It looked almost as if she were pregnant.

~Our World Changes ~

We took Sierra in to see the doctor. Other than the vomiting and her belly, she had no other symptoms and was acting completely normal. Her doctor wanted to have an x-ray done, so he sent us to the hospital where they also did an ultrasound. The results? An enlarged spleen. From there another ultrasound was done to examine the spleen more closely, and this time the results were far worse than before. Sierra had a mass in her belly. A soon as we heard the word, “mass”, so many things ran through our minds, but one word kept repeating itself, “cancer.” At that point it was as if our world had stopped turning but the rest of the world kept on going. We were told that we quickly have to get to “the childrens’ oncology hospital”, University of New Mexico, for scans and work ups. Sierra had a CT scan done and it revealed that the mass was about the size of a softball. The mass was sitting on her left adrenal gland on top of her kidney. The family was hoping for benign, but the doctors knew from the size and place the mass was, that it was cancerous. Of course we kept on hoping. Sierra went in for the biopsy, and it confirmed our worst fear – cancer. One of the most terrifying words in the world, and our daughter had it.

We knew at that point it was going to be one of the hardest things we have ever had to endure. Sierra was so sick, but you would never know it by looking at her. Her doctor, Dr. W., told us she was on death’s doorstep. How could that be though? She had been so healthy?

As soon as the results were back, and verified what type of cancer it was, the protocol was set in place for treatment. The cancer was called, “neuroblastoma.” It’s the third most common cancer among children. Yet, none of us had ever heard of it. A broviac (central line) was put into Sierra’s vein. This would allow all medication to be given without Sierra having to be poked with needles over and over. A scan called an MIBG (iodine-131-meta-iodobenzylguanidine) was done to show all neuroblastoma activity in the body. She had a total of five masses. There was the big one on her adrenal gland, one in her fifth rib, two small ones in each thigh and a small one in her right shoulder. She was stage IV.

The survival rate for the type and stage of Sierra’s cancer was 30%. Her chances of surviving were 40%-60%. That was so hard to imagine when we looked at our precious 21 month old, who went from very healthy to deathly sick, in what seemed to be, a blink of an eye.

A couple days passed and Sierra’s lungs were being crushed by the massive tumor pushing on them. It was growing fast. Her breathing was not where the doctors wanted it to be so oxygen was placed on her, and chemo was started for five days. The doctors wanted to keep a better eye on her, so she was sent to the PICU. As chemo went on, it was also the beginning of the numerous blood & platelet transfusions that she would need to have in the months to follow.

The first round of chemo took a toll on Sierra’s poor little body. Her lungs couldn’t withstand it, fluid was accumulating around the lungs, so she had to receive a chest tube, as well as be put onto a ventilator. Everything was happening so fast. When the doctors were trying to get the tube down her trachea, she coded. We can’t even begin to tell you the horrific feeling that went through our bodies when that happened. But she came through it.

The ventilator had such extremely high settings, that even an adult would not be able tolerate, but Sierra was tough, very tough, for being only 21 months old. We will never forget when one of the PICU doctors asked us what we wanted them to do if Sierra’s heart stopped beating. How do you answer something like that?

The chemo worked for the first round, Sierra’s tumor markers (catecholamines) decreased, and the doctors felt very good about it. Sierra’s little body started to swell though, called third spacing, where the body has so much fluid that it leaks from the capillaries. Our poor baby was so big that her tongue was outside of her mouth because there was no room for it inside. She was not recognizable. She was on two very heavy narcotics (sufentanayl & versed) to keep her sedated, a paralytic to keep her still, blood clotting medicine to stop the mass from bleeding, several blood pressure medications because she could not maintain it on her own, and a few antibiotics to cover bases. When someone walked into her room, all they saw was wall full of machines.

When a child is so sick, and especially on a ventilator, they can sense every tiny thing that goes on around them. So we put a sign on her door stating that only positive thoughts and smiles were allowed into her room. If you had anything negative to say, it would be in the hallway. We wanted Sierra to feel nothing but good feelings, and we strived to keep a happy environment for her. She could feel us and hear us. So we made sure she had music on that she loved, and we made sure to kiss her, hold her hand, and massage her legs. In fact, that seemed to help bring her blood pressure up to where it needed to be.

When we were faced with something so terrible, we turned to God and to prayer. Prayers got us through so much. We could not believe the amount of support and prayers that Sierra had. Family came to see her nonstop. Her aunt made her a special blanket that she never let go of, and she had a stuffed Tigger that never left her side. The Father from our church came a few times to pray and bless her. Her brother, Caleb, came to see her quite a few times, and sat by her side. Mommy and Daddy both were with her every day. Daddy slept every night at the hospital with her, and Mommy spent during the days with her. It was like that for over six months.

~ A Different Road ~

Sierra took the second round of chemo like a champ. These drugs were the kings of all drugs. Very aggressive, knock you down drugs. We were so careful with what we let Sierra eat and drink before she got sick, and wanted nothing but good stuff in her body as she grew, and there we were giving her poison to save her life.

The mass was releasing fluid into Sierra’s body, and the swelling became so much that the doctors wanted to put a tube in her belly. That was very risky because by putting a needle into it, no one knew what could happen with the mass. One of her doctors stated that he felt we should have given up at that point. He did not see Sierra surviving cancer. But of course being the way we were, giving up was not in our vocabulary, and we told him just that. The tube was put in; Sierra did just fine with it, and over a gallon of fluid was removed from her belly.

About a week later, Sierra developed a fever that would not break. Tests were run for infections, but nothing showed. The fever went on for four days, and the doctors truly felt she would not make it through it. But we knew she would keep on fighting, and she did.

Shortly thereafter we got devastating news. Sierra’s tumor markers had sky rocketed and the tumor still grew despite the chemo. We were told that she may not make it to see her 2nd birthday. We were so scared and just clung to hope, since that was all we had. Dr W. decided to switch up the chemo drugs and go with a different protocol.

The cells in cancer are very smart. Once they figure out how to get around certain chemo drugs, and become resistant, the drugs are no longer useful, and the cancer proceeds to spread. We don’t know if that is what happened with Sierra or not. But either way, it was better safe than sorry. Sierra ended up needing four more chest tubes, for a total of five. Her lungs had a hard time with the fluid, and they would just collapse. It was so hard to watch our baby lying in the bed with nothing but tubes and machines all around her. After the third round of chemo though, good things started to happen. Slowly the chest tubes went away, one by one.

Sierra’s blood pressure normalized, and a CT scan was done to see 30% calcification of the mass. That was great news! Days went on and Sierra’s breathing and lungs were doing great. The vent was being lowered consistently. The paralytic finally was removed and sedation was lowered so that Sierra could finally wake up. There she was playing, watching Veggie Tales, smiling, reading her books, all the while a tube was down her throat. She wasn’t just a strong child; she was an amazing child; and one who gave us hope.

An NG tube was put down her nose to start her on formula. The doctors wanted to get her bowels going again, and the TPN (IV food) that she was getting all along was just not enough nutrients with her being more active.

Her two-year-old birthday came along and we all celebrated with her. Family came, we sang and opened gifts and rejoiced that she was still alive and now awake. Another CT and MIBG scan were done to reveal that all the tiny masses were gone and the one in the rib was dead. We were getting closer to the end of the nightmare.

Within the following month, the vent was taken off too. That was one of the best days for us all! Finally our daughter could eat and talk again. It was so nice to see her face without anything on it! The swelling slowly went away and Sierra became skin and bones. She had terrible bed sores on the back of her head from lying there for so long, and diarrhea nonstop because of the chemo, but her body was trying to normalize itself again. She was able to eat and drink which of course she absolutely loved! She finally got out of bed, got to have a bath, began to learn to walk again, and it was all, beautiful smiles.

Sierra sailed through everything and finally got to go home! We weaned her off of the narcotics, which was an around the clock process because she was addicted to them. She went home on oxygen, but only for two months. The doctors were amazed that her lungs healed so well from being on the vent for over three months, and on very high pressures at that. Fevers would come and go. When the chemo suppressed her immune system, and she had nothing to fight off the germs, her temperature would spike. Normally a patient only receives two rounds of chemo before their stem cells are harvested for transplant later. The reason only two rounds are given is because chemo destroys the stem cells, and it makes it tough for them to recover. In Sierra’s case, she had four rounds of chemo done before stem cell. We traveled to Denver for the harvesting and she was a rock star! Even after four rounds of chemo, the doctors still got 22 million cells in six hours! The doctors told us that normally children only do about 12-14 million cells in two days! Sierra was amazing doctors left and right!

She was due for one more round of chemo after harvesting, before the doctors could talk surgery. So we did just that and she once again did awesome.

We waited a couple more weeks and did another CT scan. This time the results were fabulous!! The mass had died 75% and was about the size of a golf ball! It was time for surgery baby!

~ A Chance ~

The surgeon explained to us that it was going to be one of the most complicated surgeries he had ever done. The mass was lying on a major artery, which one false move and she would bleed out. He advised us that she could easily have lost a kidney, spleen, and part of her intestines, and the surgery was going to last at least 8-12 hours, could be longer.

Sierra was admitted for surgery and 9 ½ hours later, the surgeon came out with a smile to tell us that he got 95%-98% of the mass and she didn’t lose any organs! Talk about an amazing doctor! He walked out looking like he had done nothing for those 9 hours! Her kidney did take a bit of a hit so he had wanted to carefully watch it. She also got a G tube put in to make things easier with her feeds, and she was doing great! She had been intubated for the surgery, and the Drs expected her to remain on the vent for a few days. However, the next day Sierra developed a terrible bacterial blood infection. Her fever had gotten so high she coded once again. Our hearts dropped, and quicker than anything she was put onto four very strong antibiotics and watched in the PICU. The infection went away within two days, but she remained on the vent for a week since she was considered a shock patient at that point. Doctors wanted her to eat and drink only clear liquids until she was past the “scary” part. That was horrible for her. Sierra went 15 days without anything but Jell-O, popsicles, and water. She still had diarrhea consistently, she was stuck in bed because of her incision, and once again she had to learn to walk.

Sierra’s pathology came back that 90% of what the surgeon took out had been dead. That was amazing news, but that meant that whatever was left behind, part of it was still alive. So she had a sixth round of chemo after surgery to make sure that whatever was still there, would be wiped out. We waited a couple more weeks to have yet another scan done – this time we got the news that one of Sierra’s kidneys had failed, and there was a new spot in her chest. At that point we were set to head to Denver in a couple of days for her stem cell transplant. Dr W. still sent us up there to do the pre transplant work ups and follow the new spot, so we did.

The first day we were up there, Sierra developed a fever. The doctors gave her a dose of an antibiotic, took her blood, and sent us on our way. Her fever had broken later on that day and did not return. The following day though we got a call from the hospital up there saying she had a serious fungal infection. How could that be though? She looked and was acting fine, and her fever had broken?

It turned out that her broviac that was put in there months ago was infected. So it was removed and a different line was put in. She also developed Pneumonia and we remained there for the rest of the work ups. But on the last day we got more horrible news. Another CT scan was done to reveal that she now had two more spots, the rib tumor and the original main mass were a lot more active again. We were sent back down to Albuquerque for more chemo. We were scared out of our minds. This cancer was ruthless and was trying to win, and the battle was bigger than we imagined.

~ Little Hope ~

Dr W. had a plan in place. Another round of chemo and then Sierra was going to be sent to UCSF for a fairly new treatment for progression of neuroblastoma. The chemo was given and then we waited two weeks, and a CT scan was done and to see what was going on with the new masses. We were all hoping that perhaps the chemo had gotten rid of it all, and the new treatment would not be needed. We were terrified beyond belief while waiting to hear results. But all along, we were trying to remain positive. She was going to survive this, we just knew it. She had made it this far, how could she not win it? She was partly in remission.

A few days passed and Sierra’s G tube had stopped working. We had brought her in to have it looked at and it just so happened the results were back. They were nothing like we had expected. Dr. W. did not want to give us the news. He was floored when he saw the scans. He came in and told us that Sierra had 2-6 weeks to live. All of us, including Dr W. saw how well she was doing. But this cancer now had taken over her body. Her entire abdomen was full of tumor. The cancer was back with a vengeance, and it was laughing in the face of chemo. We were all unbelievably devastated.

Dr. W. talked about putting her on hospice care. Hospice. What a word. All the prayers and positive energy, and yet the cancer was stronger. We never dreamed the cancer would win. The day of the scan she looked so great, so healthy. In fact, she looked healthier than she had in months. How could this thing be winning? We were planning her remission party and thinking about the holidays. Not hospice and death.

Dr W. also wanted to get her onto an oral chemo. Up until that point all her chemo had been given IV, so the oral one was a chance. Her line also stopped working the right way, so IV chemo could not be given anyway. The idea with the chemo was to slow the tumor down, but not get rid of it. That was truly our last hope to buy us some more time with her. The family went online and started calling and emailing doctors across the world to see if there was anything available. But she wasn’t eligible for any clinical trials. Her life expectancy wasn’t long enough, and she had far too much tumor.

We looked into alternative medicine – homeopathic, natural healing, healing touch, Reiki, we even had a faith healer come to see Sierra. We were not giving up. From the beginning we believed in miracles. They happen every day. Right? Well, our time for a miracle to happen was running out, and fast.

How were we supposed to prepare for our child to die? How were we supposed to tell our son that his baby sister wasn’t going to be around much longer? Was it better to watch her die slowly and have every chance to say what we wanted, or was it better that she passed fast and we not had a chance?

Sierra came home and hospice came out every day to check on her. She was on a morphine pump and oxygen, which kept her asleep 22 hours a day. When she was awake she didn’t want anyone to hold her or touch her. She did not eat, but she was thirsty quite often, which was great. She didn’t do much moving, except for the occasional walk to the couch. Once in awhile we would get her to say, “tay” (k) in her sweet little voice, but even that was slowly fading. She was literally dying right in front of our eyes.

We scoured the internet for research on neuroblastoma and treatment options. At that point we were willing to give anything a try. We had been researching options from the very beginning, but we put our faith and hope into the doctors and the medicines that they were using on her. We never thought we would end up where we were. No parent should ever have to face what we were facing, trying to save our daughter. No one should ever have to watch their child slowly die.

~ Losing The Battle ~

Sierra’s breathing at home became very labored. The tumor was invading her esophagus and trachea. She went from having virtually no belly, to a very distended one once again. Her hospice nurse encouraged us to admit her into the hospital. She felt the end was drawing near. We did not want to have her pass at home. As wonderful as it was to be home, once she passed, it would have been very hard spending time in the house. How were we going to walk by her empty room?

Once she was admitted, things happened fairly fast. The first night her oxygen was doing great and she made it through till the morning. God let her be with us one more night. The next day Dr W told us that she had less than a week left and to sign a DNR. It was also Caleb’s 5th birthday. One of our children was turning a year older, and the other would never turn another year older. The heartache one feels when their child is about to die is unfathomable. There are no words to describe the pain.

That night the entire family stayed in the room with Sierra. Again, God gave us one more night with her. We celebrated Caleb’s birthday with Sierra, and had Santa come visit her a month early so she could celebrate Christmas once more, but she slept the entire time.

~ An Angel ~

The following day Sierra’s oxygen was far worse. Within two hours, her oxygen and heart rate declined at a fast pace. She was still taking sips of water, but we made sure to climb on the bed and hold her while her breathing slowly decreased. The minutes passed so slowly, but she was hanging on. Then with one last gasp…….her breathing stopped. We were there to hold her when she took her first breath, and we were there to hold her when she took her last. With a room full of family – Sierra became an angel on Nov. 23, 2010.

She was truly a miracle child from birth. She came into this world fighting, and was fighting in the end. But what we don’t understand, and never will – is how could she go through what she went through, survive it all against the odds, and the cancer still wins?

We used to picture Sierra growing up, imagining what she would do. Would she have been a model with those gorgeous, piercing blue eyes? Or maybe become a famous doctor and find a cure?

Sierra was put here for a reason, that we know. She was simply a living angel. She brought family together that hadn’t spoken in years. Her Facebook group was overwhelmed with people from across the world that followed her story and expressed their belief in miracles and God. People would tell us how Sierra changed their lives. Our little girl did more in her 2 ½ years on earth than most do in 50 years. If you were to draw a picture of amazing, you would draw Sierra’s face. She truly was the most unbelievable child. She had so much patience, no matter what was happening. She would wear her little back pack with her feeding pump in it, or carry around her pump where ever she wanted to go, she knew it had to go with her. She would lay there while we changed her dressing, so calmly. She taught all of us strength by fighting the cancer with every ounce in her little body. How could such a small angel endure so much, and smile through all of the pain?

We have people constantly ask us how we do it. How do we hold ourselves together? Well, we are not as strong as everyone claims we are. We handle things the way a human would. We yell, we cry, we pray. There is no right way to deal with this, we are angry. We know that God had a bigger and better plan for her up in Heaven, but we still want her here with us. She was a beautiful blessing, but her soul was too good for this earth. We had said it from the beginning, we would go where ever we had to, and fight till the end. And we did, we fought till Sierra’s last breath.

Facebook was an outlet and a way for us to let everyone know what was going on. What better way to let everyone know details and get prayers in return?

Sierra’s group on Facebook had thousands of members. Who knew Sierra could touch so many people across the world?

It’s so hard when children are healthy to realize how much we take for granted. We used to want her to take a nap so we could get the laundry done, or go to bed so we could watch TV. Now we would give anything for her to be fighting with her brother or under our feet asking for her sippy cup.

Her brother is too young to grasp the finality in it, but he knows Sierra is in heaven and he talks to her frequently and tells her about his day. He misses her as much as we all do, every second of every day.

~Hope For Others ~

After Sierra’s funeral, we had a motorcade, and it was then that we realized the impact our baby girl had when we saw the endless line of cars following the hearse. If one little girl could bring together so many, imagine what could be done. This foundation is Sierra’s legacy.

Her cancer journey is over, but there are many new children who begin this cancer journey every day. Neuroblastoma hopefully one day will become as widely known as the other childhood cancers, such as Leukemia, and we hope to see an end to all childhood cancer in our life time.

We want to prevent one family from feeling the agonizing pain that comes along with this cancer. If we can help one family, Sierra would be proud. Once cancer appears in your life, it stays with you forever. So we want to help keep others from having to go through such a nightmare, and see a child go through such pain. No child should have to learn to smile through pain or have to endure such a horrific disease.

We have our regrets and feel more could have been done, but we did not get the chance to do everything we wanted. Well, here is our chance.

Sierra’s short, but amazing life will live on through this foundation. Her fight and her courage will make a tremendous difference in lives of children and families who have or one day may have neuroblastoma.

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