Starting the Count Down
POSTED BY TIFFANY RUST, Camper Parent
February 20, 24014
It seems like Brianne’s end of treatment is just around the corner. Only 18 weeks of treatment left! Today Brianne had her spinal chemo along with Vincristine in her port. I could not be happier to say that she only has ONE more spinal chemo treatment left. We are starting to plan Brianne’s No Mo Chemo Party. We cannot wait to get together to celebrate Brianne finishing treatment and to thank everyone that has supported our family along the way.
Brianne has had a rough start to 2014. For about a week Brianne had a dry throat, but it didn’t seem to slow her down. Everything changed when she woke up at 2:00 a.m. with a 102.7 fever and vomiting. We rushed her to the hospital because with a fever over 100.4 the doctors worry about central line infections so antibiotics must be administered ASAP. Brianne threw up the whole way to the hospital and about every 10 minutes until she got a second dose of antinausea medication. Even though her blood counts were great she was still admitted due to the high fever and heart rate. Brianne spent three days in the hospital. The doctors believe she just had a virus, but her fevers kept coming back so she stayed on IV antibiotics while we waited to make sure her blood did not grow any bacteria. When she was feeling good she had a great time making art projects and during music time.
Brianne was discharged just in time for us to go to Camp Soaring Eagle Family Camp in Sedona. Once again it was nothing short of amazing. The moms got to go shopping at Allie Ollie and pick out a new outfit along with going out to lunch at the golf course. Brianne loved all the arts and crafts, archery, and games. Brianne was on steroid during camp so she had a few “unhappy moments”, but overall she had an amazing time. We cannot thank Juan, Maria Elena, Tyler, and all the volunteers for everything they do to make these trips possible. Brianne is so excited to spend a week with Camp Soaring Eagle in Connecticut this summer. It will be such an amazing experience for her and I am sure she will come home with new lifelong friends.
Five days after we came home from camp Brianne ended up with a fever again. She had a flu swab, chest x-ray, and UA. When everything came back clear we were sent home with instructions to follow up at the clinic the next day for more antibiotics. Brianne was placed on 10 days of a new antibiotic for what the doctor suspected to be a sinus infection. She has been feeling great since finishing the antibiotics. I just wish she would get rid of the lingering cough. It sounds horrible! Unfortunately, with adding the antibiotic Brianne’s counts were screwed up this week. Her ANC dropped to 840 when she normally runs in the 1200-1500 range. She will go back to the clinic in two weeks for another count check to make sure she doesn’t drop any lower. Until then we will be extra diligent with keeping germs away, which is hard during flu season.
I have to post one more video….the Forever Young Zone was doing Winter Olympic today. Here is Brianne and her nurse Christine curling
Past Blog Posts
Mia is an 11 year old who loves Taylor Swift. When she was 6 weeks old, she was diagnosed with a rare bone marrow disorder called Diamond Blackfan Anemia, which means her body does not produce any red blood cells. Since Mia’s little body has never produced any red blood cells, she literally lives off of people donating their blood. She requires life-sustaining blood transfusions every 3-4 weeks, along with special medications to keep her alive today.
When Mia was 8, she was introduced to Camp Soaring Eagle by her favorite nurse Miss Christine. She invited Mia to attend ‘Hole in the Wall Gang Camp’ with a group of other children who also suffer with serious illnesses. At the time, Mia had never even been to a sleepover, let alone travel across the country without her parents. Mia’s parents never thought that their little Mia would be able to be independent.
Mia attends Camp Soaring Eagle’s Travel camps each summer and is able to escape her illness and “just be herself”. She “feels like a queen” and loves her counselors because they are “nice and fun and make sure that she has all her medicine.” Her favorite activity at Camp is horseback riding and she even made a special friend named Magic.
Camp Soaring Eagle provides a safe environment for seriously ill children to thrive. While at Camp, children are taken care of medically and emotionally. They gain confidence and make life-long friendships and memories.
Mia just received her 105th blood transfusion at Cardon Children’s Hospital last week. You can help save lives like Mia’s and other children who suffer with this illness by donating blood. You can also see if you are a bone marrow match by getting a cheek swab.
Now, there are more ways than ever to give back to children who are
suffering with serious illnesses
Camp Soaring Eagle is excited to partner with iDonate this year. We’re thrilled to announce that we now accept non-cash donations! Old cell phones, electronics, gift cards (and tons of other stuff!) can send our kids to camp. Check out our homepage to see what items you can donate and how easy it is to give.
When you shop at AmazonSmile, Amazon will donate to Camp Soaring Eagle Foundation. Support us every time you shop.
Your gift is the only reason that kids with serious and life threatening illnesses can come to camp for free because no child or their family is ever asked to pay to enjoy this medically safe camping experience. And 100% of your donation goes directly to the camping program because all administrative costs are underwritten by Camp Soaring Eagle’s Board of Directors.
Hearing those words for the first time changes your life. You’re plunged through the looking glass.
You enter a world you’ve never seen. And a place that no one would enter without necessity. “Normal” will be a memory. Since that day, Aaron has endured medical tests, surgeries, and monthly sessions of intensive, five-day chemotherapy. He misses out on most school activities and his friends don’t come around much anymore. But Aaron does have one week of being normal, an oasis right in the middle of all his suffering. At Camp Soaring Eagle he found friends in other children who understand his world because they live in the same chaotic reality. At camp Aaron can be as loud and as messy as he wants, he also has learned to bait a hook and grip a bow. He laughs a lot at camp and he forgets while he’s there that he’s fighting a life threatening disease. Aaron says, “It’s a week of being away from home, but having the most fun I’ve ever had in my life.” If indeed angels are friends who lift us up when our own wings have forgotten how to fly, Camp Soaring Eagle is staffed with angels. What’s a week of normal worth to Aaron and to the rest of our family? You have no idea! – Aaron’s mom
During this season of thoughtful giving, you may be reminded of someone in your life who has given you the gift of fun, of laughter, of hope, of friendship, and family memories. Your gift to Camp Soaring Eagle Foundation in their name will honor them or their memory as well as pay it forward for a sick child and their family.
Right now you have the power to give back the fun, the joy, the friendship, the good memories, and the laughter that kids like Aaron, his brother, and his parents long for. By making a generous donation you will help a sick child shed the isolation they feel during the rest of the year and transform them into a happy, carefree kid again, if only for a week.
It is only through your generosity that Aaron and other seriously ill kids can even think about going to camp. Camp Soaring Eagle has a medical component with a cadre of volunteer doctors and nurses that tend to our campers’ on-going therapies while at the same time not intruding on their camping experience. A mainstream camp can’t do this! You can guarantee that no camper or family is ever charged for this camping experience and 100% of your donation goes directly into CSE’s programs.
Please use the enclosed envelope today to make a gift that will give the fun, the friendship, the laughter, and the family memories back to a child with a serious or life-threatening illness. Or you can make a secure donation by clicking here or by calling Joan Kaminski at 602.842.1168. Make today the day you give back the joy and laughter these kids have lost!
Max and Linda James, Founders
P.S. Your gift is the only reason that kids with serious and life threatening illnesses can come to camp for free because no child or their family is ever asked to pay to enjoy this medically safe camping experience. And 100% of your donation goes directly to the camping program because all administrative costs are underwritten by Camp Soaring Eagle’s Board of Directors.
September is Childhood Cancer Awareness Month
Camp Soaring Eagle hosts Family Retreats for families suffering with Childhood Cancer.
In the U.S., almost 13,000 children under the age of 21 are diagnosed with cancer every year. A diagnosis turns the lives of the entire family upside down. Camp Soaring Eagle hosts Family Retreats specifically designed for families who have had a child recently diagnosed with cancer. Families will gather at the Briar Patch Inn located on Oak Creek in Sedona for the Camp Soaring Eagle Family Retreat. While at camp, the children receive 24 hour medical care from our on-site doctors and nurses. Campers can bring their medicines and leave their illness behind as they are surrounded by peers and counselors who understand what it is like to be a child suffering with a serious illness.
We understand that our camper moms are wrestling with more than a typical mother’s to do list – each of them has a child currently undergoing cancer treatment. These retreats include a “Makeover for Moms” day. Stylists from Aveda Red 115 Salon in Flagstaff begin the day by setting up a full salon at the Camp. The ladies are treated to hair cuts, manicures and more. After some pampering, a bus generously donated by the team at Pink Jeep Tours, arrives to transport the ladies to Allie Ollie Boutique. At Allie Ollie Boutique. Owner & Buyer, Allie Olson, donates complete head-to-toe outfits for each Mom, along with a complete shopping spree experience. There they are greeted with champagne in glasses hand-inscribed with their names, all graciously donated by local chiropractor’s Kyle French, and his wife Alicia.
Mary Damskey of Flagstaff, whose fourteen year old daughter, Hope, was diagnosed with ALL Leukemia, exclaimed, “I feel like I woke up this morning and went to a fantasy land, and I haven’t left yet!” as her personal stylist helped her select a new look for an adult’s-only dinner at the Camp later that evening.
At Camp Soaring Eagle we recognize that pediatric illnesses impact the entire family and our family retreats provide a very special opportunity for families to step out of the grind of the daily routines and spend quality time together to play, to laugh, and create memories of a lifetime. The Family Retreat gives these families an opportunity to focus on each other and to spend time with other families, sharing stories, supporting each other and recharging their emotional batteries.
The Family Retreat and all Camp Soaring Eagle programs are completely free of charge to the campers and families. The cost for a family to attend this session is $1000 per family, all of which is funded through charitable donations. This is a great opportunity for businesses, churches and families to give back. For more information contact Rick James at 928-284-9393. Click here for sponsorship information
In Honor of National Sibling Day, Children with Sick Siblings Are Going To Camp
April 10th is National Sibling Day and Camp Soaring Eagle is conducting a special sibling camp session for children who have a brother or sister battling a serious illness. From April 12th to April 14th 25 children will enjoy a weekend filled with activities, laughter and friendship at the Jackpot Ranch in Camp Verde, AZ.
Camp Soaring Eagle Foundation is a 501(c)3 non-profit organization that provides medically supervised camping programs for children suffering with chronic and life threatening illnesses. Camp is completely free of charge to the campers and families and funded through charitable donations.
Family routines and dynamics naturally change when a child is ill, which can confuse and distress healthy siblings. In addition to fear and anxiety over the illness, they often experience the feeling of loss of a “normal” family life, and loss of their identity within the family.
It’s normal for healthy siblings to:
• worry that the sister/brother will die
• feel guilty because they’re healthy and can enjoy activities that the sibling cannot
• be angry because parents are devoting most of their time and energy to the sick sibling
At Camp Soaring Eagle they understand that pediatric illnesses affect the entire family and that an important aspect of complete treatment is helping the siblings and family members. That is why Camp Soaring Eagle is pleased to offer a special session just for the siblings of seriously ill children.
“As a Pediatric Oncology Nurse, organizations like Camp Soaring Eagle are invaluable to my practice. Because so much of childhood cancer patient’s life revolves around the hospital and medical procedures, the chance to get away and truly be a kid becomes a gift. I especially appreciate Camp Soaring Eagle’s value of the whole family, with offerings for family camp and for siblings to experience camp. Siblings often feel left out of the attention given to a childhood cancer patient and meeting their needs become just as important as meeting the needs of the patient. The vision and work of Camp Soaring Eagle is sacred work and impacts each member of the family in unique and powerful ways.”
- Tiffany Zook, RN, BSN, CPON, Cardon Children’s Medical Center, Mesa, AZ
Twenty five children from across the state will attend Camp Soaring Eagle’s weekend session April 12th – 14th at the Jackpot Ranch in Camp Verde, AZ.
Camp Soaring Eagle Foundation offers year round camping programs for children suffering with serious illnesses. Sessions are illness specific and include Family Sessions for recently diagnosed children with Type 1 Diabetes and Cancer. Weekend Sessions are held for children ages 7 to 15 with respiratory diseases, Type 1 Diabetes, and Cancer and Travel Programs serve children with Sickle Cell, HIV, Hemophilia, Metabolic Syndrome, A-plastic Anemia, Collagen Vascular Disease, Inflammatory Bowel Disease, Mitchondrial Disease and selected neuromuscular impairments including, Muscular Dystrophy, CP and Spina Bifida. Children with serious illnesses can attend Camp Soaring Eagle because they receive 24 hour medical care while at camp. Campers are referred by their treating hospital or pediatrician. All sessions are free of charge to the campers and families and funded through charitable donations.
To make a donation or get involved, call 928-284-9393
Camper Applications Now Being Accepted for 2013 Camp Season
While at camp, the children receive 24 hour medical care from our on-site doctors and nurses. Campers can bring their medicines and leave their illness behind as they are surrounded by peers and counselors who understand what it is like to be a child suffering with a serious illness.
“Attending Camp Soaring Eagle was one of the most amazing experiences of my life. Everyone made me feel so comfortable and for the first time in a long time, I didn’t feel different and was able to be completely myself.” – Manuel, Camper
Camp Soaring Eagle offers three types of residential camping programs: Camper Weekends, Travel Programs and Family Retreats. The Camper Weekends are illness specific and take place at the Jackpot Ranch in Camp Verde, AZ. Camp Soaring Eagle will host three travel programs in 2013. One to the Hole in the Wall Gang Camp in Ashford, CT (The Hole in the Wall Gang Camp is the original camp founded by the late Paul Newman). Two other travel trips will go to the Double H Ranch in upstate New York on the Finger Lakes. These travel programs offer unique opportunities for our campers to truly spread their wings and spend a week in a different part of the country with children from all over the world who have serious illnesses like themselves. The Family Retreat Programs are for families who have a child who has been recently diagnosed with cancer. These programs take place at the beautiful Briar Patch Inn in Sedona. All of the Camp Soaring Eagle programs are completely free of charge to the campers and families and funded through charitable donations.
While at camp, the children get to try all sorts of activities including: horseback riding, archery, fishing, crafts, star gazing, golf and much, much more. “It makes me smile to see the campers forget that they are patients and that they’re having fun just being kids.”- Volunteer Doctor
For the complete 2013 Program Schedule: CLICK HERE or call Juan Morales, Executive Director of Camp Operations at 928-284-9393.
All applications are reviewed by our program and medical team and decisions are based upon a physician’s review, the child’s inability to attend another camp, the severity of the child’s medical problems, and whether the child has been to camp before.
Remember The Smiles
My journey with Austin began at my second volunteer weekend at Camp Soaring Eagle. It was an oncology retreat at the Jackpot Ranch and it was the first weekend that I was put in charge of Archery. Little did I know that I was about to be introduced to one of the most amazing young men that I have ever had the privilege of knowing. There are not enough words to even begin to describe Austin but I am going to make an effort: Courageous, Amazing, Caring, Unselfish, Respectful, Honest, Responsible, Sportsman, Athlete, Tough, Intelligent, and Loyal. Austin had every great quality, and I mean EVERY quality, that you could possibly want a young man to be instilled with growing up. He treated his fellow campers and volunteers with nothing but the utmost respect and courtesy. He was the model camper and helped make this weekend just that much more amazing. He caught fish, did nothing but absolutely demolish the targets at archery and made sure that anyone who did not possess the same skills he had in these events was given the support and help they needed to be successful. It is an indescribable feeling to see things like this. To see a young man who has battled so much and faced such difficulties at a young age be so unselfish. No matter what the world threw at this little man he just smiled right back and he pushed forward with that smile. He radiated happiness and strength to everyone that was around him. He is one of the people who helped set the tone for how I volunteered at Camp Soaring Eagle. He made me understand that regardless of an illness, children still need to be challenged and pushed in order to develop the qualities that Austin had. Fortunately for me this was just the beginning of our friendship that grew exponentially throughout the next year.
The next opportunity that I had to build on this friendship was at the oncology family retreat at the Briar Patch Inn. This was the first time that I had met the man and woman who had raised this amazing young man into the person he was. Al and Nichole are probably two of the nicest people you’ll ever come across. I immediately began to see why Austin was who he was and instantly had a strong connection with their family. Whether it was fishing or dirt bikes or any type of outdoor activity we never had enough to talk about. It is people like this that give me faith that there is still goodness within the world. This is a family who has this amazing young man battling cancer and they take each day head on with such optimism and such hope. It is inspiring. They inspire me. Each one of them in their own way. They made me want to become better at what I was doing with these kids. We spent that 5 day retreat just building on this friendship and challenging each other. We created a bond that had absolutely no chance of ever being broken and will continue to live on forever. I was sad when that weekend ended but knew that I would have the chance to see them again.
This opportunity came at the Hole in the Wall Gang Camp in CT. We were taking over 40 children to this camp and, again, I had the honor to have Austin in my cabin. There were 8 children in that cabin at camp and not to sound biased, Austin was a lion among men. All of his amazing qualities shined through each and every minute that he was away on this trip. Being a young man away from a family that you care for so much can be a huge challenge. One day right before cabin chats I could tell that Austin wasn’t himself. I knew him well enough at this point to pick up on it immediately and sat and talked with him. He was homesick. He missed his family. I couldn’t blame him to be honest. Waiting at home for him were some amazing people who he absolutely loved and thought the world of and I told him exactly that. I explained to him that life is going to challenge him. There are going to be times that he is away from the people he loves but one thing he needs to understand is that no matter where they are, or where you are, you’re always going to be in each other’s hearts. Being the tough man that he was he pushed forward and leaned on the people around him to get through the difficult time. That week was one that I would be hard pressed to ever forget. I spent all week with Austin and it only solidified our friendship.
I had one more opportunity to see Austin after this camp. Tyler and I met Juan and Marie Elena at Cardon’s Medical Center just last week. Austin’s leukemia had progressed and he was admitted into the hospital. I had the opportunity to talk with his father Al and he gave us a brief explanation of what was going on with his health. Al was extremely optimistic and strong and in a position that no father should ever have to be in. We talked for about an hour and I had a chance to go into the room with Austin. He was asleep and on a ventilator and lying in his bed still fighting. I just rubbed his leg and arm and head and just stared down at his face. To see this little man who I had grown to love laying there like this fighting for his life terrified me. If I could I would have switched places with him in a heartbeat. I will never understand the higher power that decides to put children and families through this but it’s hard to forgive. On December 10, 2012 Austin passed away. There are no words to describe what news like that feels like. What I do know is this. If the goal in life is to leave a legacy behind you so that you will be remembered and loved forever then it was accomplished by Austin. Every individual that he came across in his life should feel honored and privileged to have known such a person. The experiences that I have had with Austin will live on forever through my memories and will never be lost. He is embedded in my heart and in my soul and will be there until we meet again. I love Austin and I will never forget the time we shared on this earth together.
- John Torba, Camp Soaring Eagle Volunteer.
Sponsor A Family For The Juvenile Diabetes Camper Session
Managing the care of a diabetic child is very stressful and unlike some illnesses, this regimen of care is FOREVER! Whether it is checking blood sugar levels in the middle of the night or continually counting carbs at each and every meal. It never ends.
YOU can give these families the gift of laughter and personally meet and spend time with your sponsor family.
11 Families with a child with Type 1 Diabetes will gather at the Briar Patch Inn located on Oak Creek in Sedona from July 29th to August 2. The families will stay in a beautiful cabin at the Briar Patch Inn. Volunteer nurses will be at camp for the week to address any medical issues that may arise. While at Briar Patch they will enjoy daily activities such as Archery, Arts and Crafts, Games, Magic Shows, visits from wildlife specialists and more and there is no cost to the family members.
The cost to put on this program is $1000 per family.
Sponsor A Family – $1,000
• Family sponsors are invited to come to camp and meet the family they sponsor.
• Receive a professional photograph of you and your family at the closing ceremony.
• Family sponsors are invited to join their family for a meal during the session and join in the camp activities including the very touching and emotional closing ceremony.
• Receive a personalized letter from camper family.
• Sponsors will be recognized with signage at camp, in a post camp advertisement in the Red Rock News, in our camp newsletter and on our website.
Family Pal – $500
• Family Pals are invited to come to camp during the session and participate in an activity with the families and attend closing ceremony.
• Receive a personalized letter from camper family.
• Sponsors will be recognized with signage at camp, in a post camp advertisement in the Red Rock News, in our camp newsletter and on our website.
• Activity sponsors are invited to come to camp and participate in an activity with the family.
• Sponsors will be recognized with signage at camp, in a post camp advertisement in the Red Rock News,in our camp newsletter and on our website.
To Become a Sponsor
Contact Rick James or Jennifer Perry
Camp Soaring Eagle is a 501 (c) (3) non-profit organization.
All donations are tax deductible as allowed by the law
April is Asthma Awareness Month
A Medical Perspective from Kimberly Reiners, RN, BSN, CPN, AE-C, Pediatric Asthma Educator, Cardon Children’s Medical Center
The Importance of Asthma Camp Sessions
The need for asthma camps has never been greater. More than half of the 17 million Americans who have asthma are children. A recent survey reported that 70 percent of all Americans either have asthma in their household or immediate family or know of someone with the disease. One in three children suffering from asthma went to an emergency room last year because of an asthma attack. Even more alarming is that over the last 15 years, the number of deaths from asthma has increased by 150 percent.
Children that have an opportunity to attend asthma camps have the opportunity to learn the skills necessary to manage their asthma while at the same time realizing that they can run, swim and have fun-just like kids without asthma. Many parents of asthmatic children are fearful of allowing their children to play sports or horseback ride in fear of an asthma attack occurring. With camp, the nurses teach both the children and the patients how to pre-treat prior to exercise or horseback riding can prevent an attack from occurring from running or dust/hay exposure. These children need to learn they can do the same sports and activities as their peers.
Camps also show children how they can control asthma so asthma does not control them by providing asthma tools and asthma education session. Each child receives a peak flow meter, which is a measuring device to perform daily to observe their asthma control. Nurses give individual training to each child on how to do proper medication inhaler technique to assure they are receiving a full dose of their controller and rescue medications. A group education session occurs to discuss asthma triggers so the children can relate to their peers and realize they are not alone with dealing with asthma triggers daily. Children don’t always recognize the signs of an oncoming asthma attack until it are too late. Experts agree that education is the key, and the nurses are committed to creating an environment at camp where children can learn about their disease while having fun at the same time. The education helps children learn how to take an active role in the management of their disease. The children will also learn what happens to the lungs before and during an asthma attack, and they are taught about the different types of medications and their effects on the disease. Most importantly, they learn the steps they can take on their own to better manage their asthma and avoid an attack.
Asthma is not a disease you usually grow out of -so this camp is vital in preparing children how to manage their chronic medical condition, so as adults they will have the knowledge on how to control their asthma. As a pediatric asthma educator, I understand that the power of knowledge can change lives and save lives. I also have witnessed how stressful it is for both the parents and the child to be told they have a chronic medical condition that they have to take care of every day, possibly for the rest of their life. Living with asthma can sometimes be scary and lonely for a child. They may feel isolated and fear they are the only ones who have the disease. Children with asthma are sometimes the targets of other kids who make fun of them. Asthma Camp teaches asthmatic children that they are not alone and that many others suffer from the same disease. Many campers return year after year and make life-long friends through these programs. After the acceptance of this diagnosis, these children deserve an opportunity to learn how to live life the same as their peers.
Kimberly Reiners, RN, BSN, CPN, AE-C, Pediatric Asthma Educator, Cardon Children’s Medical Center
Tiles For Smiles Program
Tiles for Smiles Program: Groups and individual customers may paint 4” tiles at any As You Wish location for $10 each plus tax or 12 tiles for $100. $7 out of every $10 spent on Tiles For Smiles goes directly towards sending a child to camp! The cost to send a child to camp for a week is $1500.
While many people across the valley have painted tiles including, valley news anchors, law offices and other businesses as part of their corporate teambuilding, Girl Scouts troops, and Football Hall of Famer, Steve Young and his family, many more are needed, and all are welcome. Angie Fraley, As You Wish Community Relations Director says, “Most people think of large projects and large sums of money in order to make a difference in a big way. This however, is a tangible, family friendly, way to involve your children in giving back and make a difference in the life of a local child, all while having fun at the same time, for only $10 per tile. It’s a win win!”