a little rae of hope »

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Two years! Two years ago I shared with the world this organization. After months of finalizing every tiny detail to make sure it was perfect. That it honored Leah’s life. That it would be something that would help families like hers. I hope she would be proud of this organization. That she would smile as she looked at each families’ images. That she would ask about their family and how they are doing.

At our second annual Hoopla of Hope event a few weeks ago, I should have been getting the games set up. I should have been filling coolers with ice. But instead, I snuck away. I got out a box of markers. And I sat coloring and writing on white lanterns. These would be laid out on a table for everyone to write well wishes and messages of love. There were seven lanterns. One for each a little rae of hope family that would be attending the event. One in honor of the families we have photographed who are still fighting or have beat their disease. And one in memory of the families that fought so hard but are now pain free in Heaven. I don’t think many noticed the tear stains on the lanterns. But I couldn’t contain my emotions as I wrote the names on each lantern.

Families that are just like mine and yours. Families who were sitting at their table having dinner one evening and in the hospital being diagnosed with a grueling disease the next morning. Families that have fought for weeks, months, or years! Families that celebrated to be in remission only for the nasty disease to show its ugly face days or weeks later. Babies that never knew life outside of hospital walls. Families that don’t technically have a diagnosis but the doctors just tell them they are fatal and there is nothing they can do for them. And then there are the families that we were in contact with to photograph but suddenly things took a drastic turn for the worse and the photos never got taken (those are the hardest for me. A punch in the gut, the feeling that I failed them.)

My dream is that next year I won’t have to write any more names than I did this year. But the truth is, I will. And if I have to, then I want to write every name of every family fighting a battle like these.

There are so many people that have no idea about our organization. They don’t know what we do or what we are here for. So my plea on our second anniversary is that you help me spread the word!!

What we are looking for:

– More photographers! Anywhere in the US. (Indiana is in great need as we push towards our goal of getting materials distributed at Riley and Peyton Manning’s Children’s’ Hospitals.

-Applicants for our board. Yep! We are growing and we need volunteers to serve on our board. E-mail alittleraeofhope@gmail.com for more info.

-A panel of doctors – Because our organization provides free sessions for anyone with a life threatening illness we need a group of doctors willing to answer e-mails on an as need basis to help us determine if the illness is life threatening.

-Families that could benefit from a session of hope. We just ask that you communicate with them first to make sure they want these images before requesting a session on their behalf. We are still growing so we cannot guarantee a photographer in your area but I promise I will do everything in my power to try!

A huge shout out to my wonderful friend Rhonda with Grin & Barrett Photography for coming to the event and capturing the day for us!

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It’s that time again!! We are getting ready for our second annual Hoopla of Hope event. Last year we had so much fun. This year we have added a few things and it’s going to be even better! We would love for you to come out and join us for an afternoon of family fun!

We will have an awesome raffle again this year including 4 tickets to Walt Disney World, an iPad, a kindle fire, a  Sumsung TV, and lots of themed baskets!  We are also excited to have a FREE kids only raffle. Kids can earn tickets by playing games at the event and enter to win fun prizes including a lego basket, American girl doll, and much more!

In addition to the fun and games, The Frigid Frog will be there selling snow cones. The Twist will be there selling gourmet cotton candy. We will have cupcakes for sale as well as soft drinks and FREE water.

 

Hoopla of hope

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“Jack is the little brother in our family- the one we love to tease and spoil. He’s got a great smile and a darling dimple. He has spent most of the past year fighting a non-Hodgkin’s Lymphoma which was diagnosed during Spring break of third grade. An abdominal tumor diagnosed as Burkitt’s lymphoma required aggressive treatment by chemotherapy. Immediately, the medical team rallied resources and educated us about the disease and the treatment. At the same time- our family and friends sprung into high gear to sort out what it might take to support Jack and our family. As Jack’s Pack of supporters grew- we journeyed through the five rounds of chemo. His tumors responded well, and we felt lucky that it seemed things might be resolved after three intense months. Within a few weeks Jack had some new symptoms and required additional testing. Unfortunately- our hopes of resolution were dashed, and the Lymphoma had relapsed. On the advice of our Indianapolis team, we sought a national expert in Burkitt’s Lymphoma and hoped we could find an open clinical trial. This search brought us far from home, to New York State.

As we faced the new chapter in New York, we felt compelled to try to capture our family just as we were. We had hoped to capture some family photos during the preceding months and had not been able to work it out. Thanks to the amazing network of photographers cultivated by a Little Rae of Hope, we were able to welcome Maegan Dougherty to meet our family during one of weekends Jack’s siblings were visiting. Jack was feeling quite ill on this day, and was facing some of the toughest weeks to date in his journey. What she was able to capture was the essence of our family unit. The images are instant family heirlooms . They will always show how brave all of our children have been during this time. They represent the importance of togetherness, good humor, and touch to the healing process.

One things these images don’t capture is the strength we have drawn from the love we have received. We have been truly humbled and irretrievably changed by the tremendous acts of love shown to us by our incredible Jack’s Pack. This tribe- made up of our family; our oldest friends; our newest friends; our coworkers;our kids’ classmates; friends of family; friends of friends; and even complete strangers- has been beside us every step of this journey- and even now- as Jack’s journey continues- we rely on Jack’s Pack.”

A huge thank you to Maegan Dougherty Photography for stepping in last minute to capture these priceless images.
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Kamden’s journey started a few years ago, actually. Kyle and Lindsey tried for two long years to start a family. Finally after seeing a fertility doctor, having a surgery, and taking special medication, Lindsey became pregnant in February 2014. Her pregnancy was uneventful; she and the baby were healthy, she carried him to full term…delivering a nearly 9 pound baby boy in November 2014! Kamden was just perfect. Over the next six months, Kamden thrived and grew, and was a perfectly normal baby until May 2015.

Kyle and Lindsey had noticed that Kamden seemed more fussy, was no longer sleeping through the night, and was not using his legs as much. All of these issues were attributed to other things like growth spurts or normal baby issues, but everything still seemed “normal.” But when Kamden caught a respiratory virus the first weekend of May, that’s when everything changed. The typical coughing, sneezing, and wheezing that comes with a virus seemed very extreme with Kamden, and he was not getting any better, even after his doctor prescribed breathing treatments and steroids. So Kamden’s pediatrician ordered a chest X-ray just to be sure everything looked okay. That’s when they found the mass.
Kamden’s doctor called Lindsey that night when he got the X-ray results and told her that they needed to get Kamden to Riley Children’s Hospital that night for further testing to get better images of what was going on in Kamden’s chest. The next several days at Riley Kamden underwent several tests, scans, and biopsies to diagnose his condition.
On May 12, 2015, the doctors were able to definitively diagnose that Kamden had stage 3 Neuroblastoma, a cancerous mass. And in Kamden’s case, it was a very large tumor in his chest that originated from his spine and neurological tissue during formation in utero. Kamden’s tumor was encompassing the entire left side of his chest, collapsing his left lung, shifting his heart and aorta over to the right side, and causing severe compression on his spinal cord. Chemotherapy was immediately started, and just that fast, Kamden was a pediatric cancer patient.

Fast forward to now, October 2015. Kamden has just finished cycle 6 of the estimated 8 cycles of chemo. After every two cycles of chemo, Kamden has an MRI to check and see if the tumor is responding, and so far, it is shrinking!! As long as the tumor continues to shrink, the doctors will want to continue with the chemo, up to 8 total cycles. Once the tumor is small enough to safely operate, Kamden will eventually have surgery to remove it. So far, Kamden has tolerated treatment fairly well. There have been good days and bad days, but he is such a fighter! Even through chemo treatments, Kamden has managed to catch back up to his milestones. Now that the spinal cord compression is decreasing, Kamden is able to use his legs once again. (Hence, Kickin’ it with Kamden!) He is now crawling, pulling himself up to furniture and wanting so badly to start walking, which is huge considering just a few months ago he couldn’t use his legs! Kamden is also starting to gain some weight again. Although things are improving and Kamden is currently tolerating the treatments pretty well, he still has quite a journey ahead of him. If things stay on schedule, Kamden could complete his chemotherapy regimen before his first birthday!

A huge thank you to Meagan Burris Photography for the amazing images.

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Savannah Elizabeth was born a ‘healthy’ newborn on December 20th, 2014. We were so excited to welcome her to the world after losing her sister at only 24 weeks. We had tried and waited for a long time and our miracle was finally in our arms!

When we brought Savannah home, she was not eating enough and did not have a coordinated suck, swallow, and breathe. She was not gaining weight, and was lethargic. Savannah was admitted to the NICU on December 30th. We worked on feeding her by bottle, but she continued to lose weight. The doctors decided they had to put in an NG tube, (a tube in her nose that went down to her stomach) to ensure she could get the calories she needed. Savannah remained lethargic, had very low muscle tone, and did not have more than 5-10 minutes of awake-time a day. We did a swallow study to see why she was having difficulties eating. The swallow study showed a narrowing in her esophagus so the doctors thought she might have a milk allergy and took her off of breast milk and switched her to a non-dairy formula. They tested Savannah’s blood for infections and diseases (common and rare), all which came back negative.

The NICU doctors then put in a neurologist consult to examine her due to her decreased alertness. The neurologist consulted genetics, and together they ordered a brain ultrasound, echocardiogram, brain MRI, EEG, more blood work, and even a spinal tap. Everything kept coming back normal, except the EEG. It was so abnormal the neurologist thought it was hooked up to her head wrong and wanted a repeat test. This is when things got scary!  Savannah was thought to have a condition called Nonketotic Hyperglycinemia (NKH). The neurologist told us she likely had one month to a year to live. That’s right – ONE MONTH to A YEAR… They repeated the EEG and drew more labs. The EEG then confirmed Savannah’s brain had what is called a “burst-suppression” pattern.

At this point Savannah was transferred to the Madison Children’s Hospital NICU. She had an EGD, to further investigate her feeding difficulties, which also came back normal. Savannah stayed in the Children’s Hospital NICU for about 3 weeks, waiting for all the blood work and spinal fluid results to come back. It was also decided, Savannah would need a G-tube to eat due to her low muscle tone and risk of aspirating. (A g-tube is a small tube inserted through the abdomen that delivers nutrition directly to the stomach)  After 36 days spent in the two NICUs, we were sent home without a diagnosis knowing Savannah was likely having seizures and they would soon become so severe they would take her life.

In March, Savannah was started on an anti-seizure drug to stop or prevent her from having seizures (No seizures had shown up on any of the EEGs). This drug was toxic to Savannah and on Tuesday, March 24th Savannah stopped breathing and needed CPR. We called 911 and had to go to the hospital. Due to Savannah’s weakened state, she came home on hospice and continuous oxygen. We said our good-byes every day that week and had our pastor come over to give Savannah blessings every day. Savannah had many apenic spells where she would stop breathing and needed stimulation to remember to breathe. She fought hard and surprised us; she made it to Sunday for her baptism. (Not many people know, but she stopped breathing during her baptism and we didn’t think she was going to make it).

Since March 24th, Savannah has needed 24hour care. She continues to have apenic spells several times a day. When she vomits, she turns so blue for so long we have had to give her rescue breaths 3 times to get her back. Savannah just doesn’t have the muscle tone to clear her throat when she coughs or vomits. On August 2nd, Savannah was admitted to the hospital for a double ear infection and pneumonia. She struggled to breath, had high fevers, her heart rate was high, and her pulse-ox was low. She needed IV antibiotics for almost a week before she finally started to feel better. These are scary times for us, where we fear the worst.

Savannah just turned 9 months old on September 20th, which is an amazing feat for Savannah. She continues to have seizures, but actually went a whole month without any! She is working with physical therapy and speech therapy and getting stronger every day. We are working on skills to increase muscle tone in her arms and legs. We are introducing new textures and toys to help Savannah learn and develop. She is working on tummy time and rolling over. Savannah is gaining some neck control, and is now able to turn her head from side to side while on her tummy! Every accomplishment may be small, but to us is so big! Savannah is becoming more alert and responsive every day. Her feet are so ticklish, she doesn’t like cold wipes for diaper changes, she loves baths but hates her face washed, she loves when people sing and read to her! Savannah now has 5 teeth. She has grown so tall she wears 18 month clothes!

We are saddened to think how some days we just pray and hope for an extra minute with her, praying for the strength that she will keep fighting. The daily struggles are real, but we don’t focus our lives on them! Our lives are better spent focusing on this beautiful girl, her strength, and her inspiration! She encourages us to be better people and to live each day for today! We don’t stress about things we can’t change. Yesterday’s worries are in the past – leave ’em there. Focus on today and what is in front of you now. Live today. If you want to do it, then do it! Make it happen! Don’t make excuses. Savannah may be critical, but we live, we LOVE, and we do our best to show her the world and make memories! We are blessed each minute we get with her! Don’t take life for granted – slow down and live. Enjoy your day and the time you have!
Jay, Rachel, and Savannah

A huge thank you to Alia Morgan Photography for these gorgeous images.

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I’m (Mom Hoku) from Molokai and I met Jade when I moved to Lahaina, Maui in 2006. We dated for a while before we had Jayden. I wasn’t supposed to be able to have children because of my POS (polycystic ovarian syndrome), but low and behold, I found out I was pregnant in 2010.

Jayden was born on January 22, 2011. I had complications—I have a cardio myopathy but they overruled my request for a C-Section and pushed for a natural birth. I ended up having an emergency C-Section. Luckily, Jayden was born a healthy baby boy. After Jayden’s birth, however, doctors found that was bleeding internally. I had to be rushed to the OR for them to re-open my stitches to find out where I was bleeding. I spent the next days in and out of consciousness and the doctors ended up removing my ovaries and uterus—so Jayden will be always an only child.

Last August, for five days Jayden had high fevers (over 102) and it didn’t diminish at all. Jayden has always been active, but suddenly he wasn’t showing any interest in his favorite activities. Instead of riding his bike around he stopped eating and was laying down all the time. My mommy instinct told me something was wrong even though doctors just told me it was a virus. By the fifth day of this, I took him to his pediatrician who had just returned to Maui and she ran tests and called the next day to say that he may have leukemia. I felt like the world had stopped.

We immediately flew over to Oahu where Jayden was diagnosed with ALL (Acute Lymphocytic Leukemia). The day was August 5, 2014.

Currently, Jayden is in maintenance. He is still receiving final taps every 3 months which includes a lumbar puncture.

He takes Bactrum on the weekends to prevent him from getting pneumonia and four days a week he gets chemo at home through an oral medicine.

Every Wednesday we have to check his ANC, or overall blood count, to make sure that he can still take his chemo at home. But if his ANC falls below 500 then he deemed “at risk” for getting another illness and chemo has to be put on hold until his blood count is back above 500.

If Jayden gets a fever, it’s an automatic med-evac flight to Kapiolani Medical Center on Oahu. He has to be held 24 hours after his fever breaks so that way they can keep him under surveillance.

There are a lot of inconveniences that comes with having a sick child on a neighbor island (not Oahu, the main Hawaiian island).

First, there are no facilities on Maui that administer chemo to children; only for adults. So when Jayden needs treatment, we have to go to Kapiolani for treatment over on Oahu.

We fly over to Oahu and that worries me. All the air on the airplanes is recycled so when someone even sneezes I think to myself “Is Jayden going to get sick?” It scares me every time, but I try to be strong for him.

My ticket and Jayden’s ticket is covered by insurance, but if his Dad Jade accompanies us, it’s up to $300 to go to Oahu for the day for Jayden’s treatment. It gets really expensive. Sometimes we have to wait in the hospital all day while they run tests because we have to wait for the insurance company to tell us where they are going to lodge us. Some of the places they put us in are unsafe—the cheap hotels are dirty with a lot of mold in the air. I try to spend as little time in those rooms as possible.

When we land in Oahu and when we leave, sometimes we have to pay for a cab out of our own pocket—which can cost up to $40 per trip.

Then there’s the food—eating out every day gets expensive, especially because all food that Jayden eats has to be made fresh.

Jayden is not able to have foods that been left out for two hours or more; all foods have to be fresh. Additionally, he is restricted to the indoors because of his low immune system. If we were to go out, he has to wear a mask. Since his diagnosis a year ago, he has spent about 95% of his time at home.

Jayden’s skin is very sensitive and he is highly prone to sunburns. If he does go outside in the sun, he has to be fully covered and wearing a hat and sunscreen. He can only be outside for an hour.

Because it’s so hot in Lahaina, he often gets rashes that are triggered by heat. It’s because of the chemo but because of the heat it becomes more uncomfortable.

At the end of the day, Jayden gives us hope. He’s so active and you can tell that he is so strong; he’s a fighter.

And I pray a lot. God has given me hope and strength.

To donate to this family click here.

A Huge thank you to Angela Nelson Photography for these amazing images.
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Everyone who meets Kyle seems to be touched by the light in his eyes and the joy in his heart. As expectant mothers, we pray for healthy babies. As parents, we have hopes and dreams for our children. Our family would soon discover that we would be blessed in countless ways from dashed hopes and shattered dreams. Kyle is a fraternal twin and has a rare form of intractable epilepsy. Known as Lennox-Gastaut Syndrome, this debilitating and often life-threatening seizure disorder profoundly affects a person’s ability to function and to maintain a relatively normal life. But, what is normal and who defines it? By what standards do we measure the quality of someone’s life? At the tender age of 3, Kyle’s severe seizures surfaced. His twin sister, Lauren, does not remember what life was like before Kyle’s seizures began but is continually inspired and is now pursuing a career in the neurosciences.

Day after day and year after year, constant seizure activity affected Kyle physically and mentally. And yet, Kyle remains joyful! He has unstable motor function and is mainly non-verbal from the never-ending firestorm of seizure activity that causes injury to his face and body time and time again. With multiple triggers, he lives life sequestered in a climate-controlled environment. Bright light, direct sunlight, barometric pressure and temperature changes, strong odors, loud noises, dehydration, overstimulation and illness are among many of the triggers for Kyle’s seizures. Seizures are non-specific. What may cause a seizure for one person may not cause a seizure for another person.

To date, every possible medication, therapy and appropriate treatment that fit Kyle’s profile has been tried including the Ketogenic Diet. Rare genetic and metabolic disorders were also included in the long list of tests and possibilities. There was no known cause with the exception of the possibility of a spontaneous genetic mutation. Various brain scans gave the appearance of a healthy brain. It was as if the house was built correctly but the wiring was faulty.

The only diagnostic test that revealed clues was the EEG. Kyle’s brain showed the classic spike and wave pattern of Lennox-Gastaut Syndrome. He was evaluated for brain surgery, but a focus could not be found as his entire brain was involved. However, Kyle was found to be a good candidate for an implant called a Vagus Nerve Stimulator which is surgically implanted in his chest with wires connecting to the vagus nerve. Electrical stimulation interrupts seizure activity. Our next hope is to participate in a study for medical cannabis. It took considerable time for the VNS to have any impact on Kyle’s seizures. At one point, he was admitted to ICU and sedated to calm a raging storm of seizure activity. While sedated, his brain registered seizure activity every 10 seconds … finally, his body received the respite it needed. For the next 18 months, he had relatively few seizures. Then, they mysteriously began again … with outrageous force.

Some of the seizures we witnessed were unbelievable and seemed to defy the laws of physics. One atonic or drop attack variation we witnessed sure fit that description. We called these seizures “angel flips” because his body literally somersaulted mid-air! Often we wondered if Kyle would live to see his next birthday. My prayers became urgent pleas for our little boy. Truthfully, we didn’t have the time or the luxury for a pity party… good thing! Many prayers were said for Kyle: fast and furious (mine) and more eloquently from friends, family, churches and wonderful people who didn’t even know us!

How can anyone endure and survive such an onslaught of seizures… and be joyful and happy? How is this possible? Kyle knows! He has the joy of the Lord in his heart!

A huge thank you to Sarah Paradis Photography for these images.
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My pregnancy with Oxlee Jr was uneventful. He was born 10 days early via cesarean section, thankfully. Upon entering the world the doctors and nurses knew immediately that something wasn’t quite right. Oxlee was missing all the skin on his hands and feet. Hours after his birth he was transferred to another hospital that provided the higher level of care he required. He spent the first 2 weeks of his life in the NICU and it was during this time that his father and I learned the tongue twister of a disorder that would alter the course of our son’s life forever – Epidermolysis Bullosa.
Oxlee needed intensive bandaging from day 1. The slightest touch would literally cause his skin to rip off his body or to form blisters that would grow before our eyes. This was 14 years ago; diapers had the adhesive tabs that proved to be disastrous if they came in contact with his fragile skin. This was a new normal for us and we had no clue how or why it happened. Epidermolysis Bullosa (EB) is a genetic disorder, however as far back as our families could recall there were no cases of it. Oxlee Jr, my husband and myself all had our DNA tested to help locate the gene and mutation responsible. Evidently my husband and myself are both non-affected carriers, which makes Oxlee Jr have the Recessive Dystrophic type of EB, which is considered a severe form.
EB affects more than just the skin. It affects internal tissues, growth, mobility, and physical development, among other things. Oxlee could never play sports or have rough physical contact with others. We could never lift him or carry him like other parents carry their babies. We had to be super careful in the clothing we chose for him as seams could damage his skin in minutes. Eating became difficult for Oxlee, as he would suffer blisters in his esophagus and his mouth, causing pain and strictures that prevented him from swallowing. To this date, he has had more than 20 esophageal dilations to help stretch his esophagus so he can eat.
Currently Oxlee has wounds on approximately 60% of his body. They are painful and interfere with normal activities of life like bathing, walking and sleeping. We try to keep life as normal for him as possible but as he grows older and smarter, it’s difficult. Oxlee Jr is very intelligent for his short 14 years of life. He has dealt with physical and emotional pain since his birth and every year he sees many of the children he has come to know over the years pass away one by one from the cruel reality of EB. The doctors advised us when he was first born that he most likely wouldn’t live to see his 1st birthday. On August 25, we celebrated his 14th.
Two years ago Oxlee was hospitalized with what we thought was pneumonia. Little did we realize how close to death our boy was. After being transferred to two separate hospitals, Oxlee was diagnosed with cardiomyopathy and heart failure. His heart was functioning so poorly that the cardiologists didn’t think he’d make it home. He spent almost two months in the cardiac intensive care unit and was discharged home weak but alive. We are blessed to still have him with us. He challenges us daily with his stubbornness, his wit and his unique sense of humor. He struggles daily with things that many of us take for granted and he knows the reality of his disorder.
There is no cure for EB but researchers are getting close. For the time being he wears bandages all over his tiny and fragile body.
Oxlee is a freshman in high school this year. He attends our local middle/high school and is fully supported by an amazing staff. Finding a life balance in our family is a delicate balance but after 14 years, we handle delicate well.

A special thanks to Brittney Livingston Photography for these images.

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