Cure Childhood Cancer

CURE Blog


September 17th, 2014

2014 Hero Sponsor Muse Salon and Spa Hosts A Day of Pampering for CURE

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The 10th Annual “A Tribute to Our Quiet Heroes” luncheon, program and auction is only 10 DAYS AWAY! We have many people to thank for making sure this year’s event will carry on successfully as it has for so many years, and we are excited to continue this important tradition of honoring mothers affected by childhood cancer while raising money for life-saving research. In particular, our 2014 Hero Sponsor, Muse Salon and Spa, is helping CURE in more than one special way during Childhood Cancer Awareness Month. In addition to donating at least $25,000 to the Quiet Heroes event as a Hero sponsor, Muse Salon and Spa will donate all of its salon service proceeds to CURE on September 18th from 9 am-7 pm, in support of the “A Tribute to Our Quiet Heroes” luncheon! We are more than grateful for the many ways Muse is supporting our mission to cure childhood cancer in our lifetime. Along with raising money for much-needed research, CURE Childhood Cancer also strives to provide support, whether emotionally or financially, to patients and their families during times of crisis. Events like Quiet Heroes go far beyond raising money for research. It is also a time where mothers can break their silence about this disease and allow them to raise their voices as we anticipate the end to childhood cancer. We thank Muse Salon for helping us give mothers this special moment to be heard and share their journeys. We hope you will stop by Muse Salon and Spa on September 18th , and we are looking forward to the Quiet Heroes luncheon on September 27th!


September 17th, 2014

CURE Childhood Cancer Honors Freddy Henao

September is National Childhood Cancer Awareness Month. Join us today, September 17, 2014 as CURE Childhood Cancer honors Freddy Henao. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Freddy’s fundraising page.

Freddy Henao Photo

Our son, Carlos Alfredo Henao “Freddy,” was born on January 22nd 2008 in Wichita Falls, TX. He was our first child and we were so delighted to have him.

We are a military family, my husband is active duty Army, so shortly after Freddy was born we moved to Fort Carson, CO, and he deployed to Iraq in 2009. In early 2010 my husband came back from deployment and we found out we were expecting our second child, a girl. We also received orders to move to South Korea as a family. On April 14th 2010, Freddy developed a fever of 102 and a limp with pain in his groin area. We were 2 weeks away from our move to South Korea. I took him to Evans Army Hospital where they immediately ran blood work, examined him, and then discharged. We went back the next day to receive the results. We thought he was all better; the fever was gone and he was his normal happy 2 year old self again. However, the doctor informed us they saw “blasts” (immature white blood cells) in his blood and we were being sent to an oncologist to “rule out” leukemia.

There, the oncologist informed us (after drawing blood) that he did in fact have cancer and most likely it was Acute Lymphoblastic Leukemia (ALL). On Friday, April 16th 2010, he had bone marrow biopsies and surgery to place his port in his chest. The following Monday he started chemotherapy and was hospitalized for fever and low oxygen (due to leukemia). The diagnosis of ALL was confirmed and we were told his entire treatment was going to be 38 months long! He went through about 7 months of intense chemo, where he also had several spinal taps, bone marrow biopsies, blood transfusions, and hospitalizations. We also welcomed our daughter Adriana Elise into the world on August 28th 2010, in the midst of his intense chemo. In November 2010 he finally entered maintenance chemotherapy where he would receive monthly port chemo, take daily and weekly chemo pills as well as steroids for a week every month and antibiotics every weekend for the next 3 years. Medicating him had been a nightmare and the decision was made to place a G-tube for him to adequately receive all his medications.

Freddy was doing great until Febuary 2011. He started getting all sick; the oncologist ran lab work and he had low IgG counts, so they added monthly IVIg infusions to his treatment. We received orders to move to Fort Stewart, GA, so at the end of May 2011 we were preparing to move. But Freddy started getting sick again. We had to make the trip over 5 days, with Freddy running very high fevers, on IV fluids in his port daily and having to stop somewhere in Kansas to pick up antibiotics for his infected G-tube. We finally made it to Georgia and he was seen by the oncologist here. They were afraid he was relapsing due the fever, so he was admitted into PSU at Memorial Hospital in Savannah. Thankfully it was not a relapse – just a bad infection and very low IgG counts again. The rest of his treatments went wonderfully.

Freddy finished chemotherapy on June 22nd 2013! He is now 6 ½ years old and is in first grade. He still receives some medications and IVIg infusions for now. We are so very thankful that he has made it through this very long journey and hope that the leukemia never comes back! He is a sweet boy who likes to collect rocks, loves his little sister and his dogs. He loves the color orange and he wants to be a doctor when he grows up.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503Unfortunately not all kids with cancer get to “grow up.” Too many are robbed of that chance because of cancer. Every day 46 children are diagnosed with a childhood cancer and every day 7 of those children pass away. There is far too little research money that goes to childhood cancers. Many of the drugs being used were made for adults and have a lot of side effects as well as late effects and possible secondary cancers. That’s where organizations like CURE Childhood Cancer come in – they help raise money for childhood cancer research. Please find it in your heart to give to CURE so they can find a cure for these children. Every little bit helps!

 


September 17th, 2014

CURE Childhood Cancer Honors Joe Chapman

September is National Childhood Cancer Awareness Month. Join us today, September 17, 2014 as CURE Childhood Cancer honors CURE Kid Joe Chapman. Join our fight as CURE’s Kids Conquer Cancer One Day At A Time! Donate to Joe’s fundraising page.

As I sit here trying to write the words to Joe’s story, I am reminded of the times I saw the TV commercials for children fighting cancer and thinking to myself that could never happen to my children. It can, and it did.

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It was in April of 2006 that I received a call from Joe’s stepmom (Joe had been living in Georgia with she and his Dad). She was concerned because Joe wasn’t eating well, sleeping all day, and just not feeling well at all. She is a nurse so she immediately took him in for tests and in the next couple of days, received a call that his cells were atypical. They immediately took him to Children’s Healthcare of Atlanta at Egleston where they officially received his diagnosis. He had Acute Lymphocytic Leukemia. That was on Friday April 14, 2006. I was down there by Saturday and we spent the next week in the hospital. I came back home to Illinois the day Joe went home with his dad and stepmom. I was prepared to travel back and forth for as long as it took.

I went back down the next weekend. He had just been in clinic on that Friday when his doctor noticed a lump in his right leg. They decided to keep him, and by the next week we were in ICU where we would spend the next month. He had contracted an infection from 2 intramuscular chemo shots in both legs. After spending that month in ICU, the doctors realized he had an infection in his other leg as well. The chemotherapy continued while we were in the hospital, as did multiple procedures to drain his wounds on his legs. Joe had lost most of his mobility so he wasn’t walking. By August, he was doing better, and the decision was made to send him to Scottish Rite for physical therapy to see if he could walk again. He was still getting chemo and it was very hard for him to do everything he needed to do to strengthen his legs. His Dad and I made the decision to have him discharged, and go home for a while.

Once home, he started eating again, and in general, looked 100% better. I stayed in Georgia until January of 2007, when we had to make another decision concerning our daughter, who was pregnant, and living with friends and family while I was with Joe. I still made periodic trips back and forth and Joe came up for Spring Break. By that summer, he was feeling tons better, and was able to go to camp at Camp Sunshine. He was so excited to be able to do this! After that, I picked him up, and he came back to Illinois where he had decided to live again. By then, he was in maintenance and it was easy to get him started at Riley’s Children’s Hospital in Indianapolis. We continued his treatment, and in February of 2008, he was able to get his feet operated on to be able to walk again. He had lots of nerve damage from the chemo and a severe case of drop foot that no amount of physical therapy would be able to fix. After six weeks, and two casts, he took his first steps after 1 year and 10 months of not walking. I can remember vividly his sister coming home and crying after seeing him walk again. After that, he was able to be on the go more often. Even though I still worried, I let him. He was still taking medicine, doing monthly treatments at Riley’s, and having so much fun being able to go and hang out with his friends again.

He finished 7th grade, had an uneventful year, went to Camp Sunshine again, then spent some time with his Dad, and family in Georgia. He was soon home where he started his 8th grade year. It went by without a hitch. He graduated 8th grade in May of 2009 after being able to take a class trip to Holiday World in Indiana.

On May 21st we had to do a bone marrow aspiration. His Doctor was concerned because his counts had been a little low. We got the results that day and the cancer had returned. I was devastated but he just looked at me and said, “Mom, it’s okay, we beat it once, we can do it again.” Life was back to the old new normal but for the first few weeks, he seemed to feel really good. His sister and I were tested but not a match for the bone marrow transplant he now needed. A non-family donor was found and it would be September before we could get the transplant.

He had to be cancer free. We did outpatient chemo and in June, he had an infection that required a five-day stay. We were in the hospital again for five days in July for inpatient chemo. Over the 4th of July weekend we searched for fireworks from his hospital window in the rain. On July 10th we made our final trip to the hospital. He had spiked a fever, and was admitted. The last couple of weeks had finally worn his poor body down.

On July 17, 2009 at 5:35 P.M., my son took his last breath. I, along with his father, my Mom, brother, sister-in-law, and his sisters Brittany, Hillary, and Kaelynn were there with him. He also had 2 brothers, who were not there, Benjamin and Evan.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503We miss him. His friends and extended family miss him. We miss that smile and that deep, deep laugh that would come out of nowhere when he was tickled by something. I try not to question but I sometimes wonder in a world where so much technology is available, why we can’t find a cure for the cancer that is stealing America’s future. I am thankful for organizations like CURE Childhood Cancer who are devoted to finding that cure.


September 16th, 2014

Purchase A Quiet Heroes Raffle Ticket Today!

On September 27th from 11 am- 2 pm at the InterContinental Buckhead, CURE Childhood Cancer and guests will honor the mothers of children diagnosed with cancer at the 10th Annual “A Tribute to Our Quiet Heroes” luncheon, program and auction . In addition, $20 raffle tickets are now available to purchase online, for a chance to win three amazing prizes. Raffle items include a David Yurman ladies bracelet, a travel package including two roundtrip Delta Air Lines tickets and an iPad package. Best thing is, you do not need to be present to win! All event proceeds support CURE’s $2.5 million commitment to fund life-saving pediatric cancer research. Now, anyone can make a contribution to our mission to end childhood cancer without attending this event, so be sure to share with your friends and family! We would like to give a special thank you to Brown & Co. Jewelers, Delta Air Lines, Mori Luggage & Gifts and Lisa Paras for donating these wonderful items. Purchase your raffle tickets today, and best of luck to all participants!

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September 16th, 2014

CURE Childhood Cancer Honors Sam Giordano

September is National Childhood Cancer Awareness Month. Join us today, September 16, 2014 as CURE Childhood Cancer honors Sam Giordano. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Sam’s fundraising page.

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Sam is a very special 7-year-old boy. After receiving regular 4-year-old shots and a flu shot, a fever set in and continued on for some days. We saw the doctor twice, and on the third time he was admitted into the hospital for a bone marrow test. He was diagnosed in November 2011 with Acute Lymphoblastic Leukemia (ALL) and he started chemo Friday morning November 11, 2011.

Sam has been an inspiration to all of us. He has had about a handful of blood transfusions in the past 3 years; lost all his hair; lost and gained weight constantly; had numerous spinal taps; went through the difficult challenge of learning and taking chemo pills every night (that was a hard battle); having a port inserted below his collar bone; being told that he can’t go outside to play, not being able to go to school, not being able to eat fast food when his counts are down. The list goes on.

In 2012, a local artist named Morgan Webb painted Sam in a mural in the new, remodeled wing in outpatient at Memorial hospital. When he went to outpatient for his blood work he was surprised to see himself in the mural. WOW. What an amazing feeling that was – it brought us all to tears. We were so overjoyed to see how much an inspiration Sam has been to our community.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503As I write this in August of 2014, the fight continues. Sam is still going through treatment with chemo pills nightly and monthly check ups with spinal taps and chemo. He has never once stopped being our little hero.

 


September 16th, 2014

CURE Childhood Cancer Honors Hudson Lillystone

September is National Childhood Cancer Awareness Month. Join us today, September 16, 2014 as CURE Childhood Cancer honors CURE Kid Hudson Lillystone. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Hudson’s fundraising page. 

Hudson Lillystone PhotoHudson’s story began on November 7th 2013. She had been feeling under the weather and complaining of stomach pains for a few days. A trip to the doctor initially diagnosed this as strep throat but, after medication, she was not feeling any better. Hudson’s mom, Emily, took her back to the doctor where they decided to do some blood work just to have a quick check. The very next day, we received a call telling us to take Hudson straight to the Emergency Room at Egleston because it appeared our Lilly might have Leukemia.

It was a heart stopping moment for us. It is impossible to describe the feeling when driving your three-year-old girl to the hospital under these circumstances. When we arrived, tests were conducted and it was confirmed that Hudson had Pre-B Acute Lymphoblastic Leukemia (ALL). Treatment began immediately and Hudson was in the hospital for close to two weeks.

We have been fortunate since treatment began. Hudson has responded very well to the chemo during each intense stage of the process. It was difficult for her in the beginning; most days involved her lying on the sofa. Once home, Hudson was in pain and didn’t really understand why. She is incredibly strong (#hudsonstrong to be precise) and has met each challenge head on. She quickly came to grips with her “new life.” When health permits, she can be found outside playing with her friends just like any other kid her age.

She understands that the medicine is needed to beat the dragon inside of her and has never doubted the outcome we all know is coming – a complete recovery at the end of her treatments in early 2016.

A great example of her strength and optimism was when her hair began to fall out. Rather than putting anything off, she stood up and asked to have her head shaved. She stood smiling and laughing throughout. We call her Hudson Strong for a reason; she continues to defy her illness and inspire all who she meets. Hudson has just begun her maintenance phase. Hudson has also been selected to be a part of a research studio through Aflac for reduced dose treatment. This keeps her out of the hospital for prolonged periods of time and really allows her to live normally.

Her Make A Wish was to learn to surf in Hawaii. We just returned after seeing her stand and surf all by herself almost immediately.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503She thinks nothing of attending fundraising events to help raise awareness to this awful disease and I doubt that this aspect of her life will ever change.


September 16th, 2014

CURE Childhood Cancer Honors Anderson Krieger

September is National Childhood Cancer Awareness Month. Join us today, September 16, 2014 as CURE Childhood Cancer honors Anderson Krieger. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Anderson’s fundraising page. 

Anderson Krieger PhotoWhen our ten-year-old son, Anderson, came to us with chest pains in the middle of the night on February 16, 2013, we thought it was a pulled muscle. Anderson was an avid baseball player and had just had his weekly batting lesson a few days before. The next day he woke up ready to cheer on his brother, Ian, at his swim meet. About halfway through the meet, Anderson began crying and saying that his chest hurt again and he could not breathe well. Worried it might be the start of pneumonia, we took him to the local ER where x-rays were taken. We were told it was likely the start of a virus along with a pulled muscle and were sent home.

As the weekend progressed, Anderson’s symptoms worsened. He began vomiting and running high fever. After visiting our pediatrician, she advised us to take him to Scottish Rite for more tests. The doctors there decided to admit Anderson because his blood work was a little “off.” After one night in the hospital, we received the news no parent ever wants to hear. The doctors told us that Anderson’s blood was showing “blasts” indicating that he had leukemia. One more test would need to be done to confirm the diagnosis. With broken hearts, we went back to Anderson’s room to tell him.

The next morning, the final test confirmed that Anderson had Acute Lymphoblastic Leukemia (ALL). The next few days were a whirlwind as Anderson was taken into surgery to implant his port and begin his first round of chemotherapy.

The first month of treatment proved challenging as Anderson developed a life-threatening infection in his intestines. In the early hours of March 18th, Anderson was taken into surgery in hopes to repair the perforation in his intestines. After the surgery, Anderson was on a ventilator for eleven days while his body continued to fight. Anderson’s hospital stay was a total of nine weeks, including two weeks in the Rehabilitation Unit where he had to learn to walk again since the infection had moved into the upper muscles of his right leg. Anderson was finally released to go home on May 7, 2013. He continued with outpatient rehabilitation for several weeks and still receives weekly physical therapy.

Anderson is currently in remission and in the maintenance stage of chemotherapy. He has less than two years of treatment left and is handling it all like a champ. He still has difficulty running, but it has not stopped him from getting back out on the field and playing his favorite sport, baseball.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503Even though we are over the rough part, we continue to be mindful of the complications that can arise as part of his continued therapy. There are also long term effects that may come up later in life as a result of chemotherapy. For now, we are thankful for the advances in medicine that have successfully put Anderson’s leukemia in remission. We give God all the glory and pray daily for a cure to childhood cancer. We would love for you to partner with us and support the CURE organization in their efforts to find a cure for childhood cancer. Together we can make a difference.


September 15th, 2014

CURE Childhood Cancer Honors Erin Massey

September is National Childhood Cancer Awareness Month. Join us today, September 15, 2014 as CURE Childhood Cancer honors Erin Massey. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Erin’s fundraising page. 

Erin Massey Photo

On April 18th our life changed. Everyone wants to know what and how this all happened. Well, here it goes…

Erin had the flu, but she got better and all was well. She woke up the week after with a fever of 104.5. We went to the doctor again and all scans were negative. She seemed great except for the fever. On Friday she had a swollen arm (which she had hyper extended at soccer practice) and we noticed a yellow tint in her skin. So of course I Googled it and was thinking maybe mono. When they tested her for mono on April 18th, her white blood cell count was about 50 times higher than normal and her blood platelets were almost nonexistent. The next thing I knew we were following her in ambulance to Egleston Children’s Hospital in Atlanta.

Screen-Shot-2012-09-07-at-1.56.52-PM27-150x1503Erin was diagnosed with Acute Myeloid Leukemia. Her first month in the hospital was really rough. Her arm injury got an infection and that ended up being diagnosed as compartment syndrome. For this, we had 7 surgeries and spent most of the first month in ICU. At that time the arm was more of a concern over the leukemia. We are now in the middle of round 3 of chemo treatments out of 4. Her spirit has been great and she is doing really well. She has most of her movement back in her hand and arm. Being a soccer goalie is her dream, so she has worked very hard in therapy. She is determined to play her senior year.


September 15th, 2014

CURE Childhood Cancer Honors Nicolas Duncan

September is National Childhood Cancer Awareness Month. Join us today, September 15, 2014 as CURE Childhood Cancer honors Nicolas Duncan. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Nicolas’ fundraising page.

Nicholas Duncan Photo

In June 2011, while being treated for lymphadenitis, during the second surgery, the pathology report indicated the presence of cancer cells in the infected lymph node in the neck of my ten-year-old son. By the time he completed the PET scan, he was diagnosed with stage 4, “B-Cell Precursor, Lymphoblastic Lymphoma.” He has been on Acute Lymphoblastic Leukemia (ALL) treatment since then which is scheduled to be in place until October 2014. He has been through 137 rounds of chemotherapy, 31 procedures under anesthesia, 27 chemo injections via spinal tap, 35 breathing treatments, and a total of 51 days in the hospitals, along with hundreds of oral chemo medicines.

We celebrated his 14th birthday in July and we will have a bigger celebration in October 2014, as he reaches the finish line. Throughout his journey, he has participated in many fundraising events such as singing, running, play performances and piano recitals. In June 2012 he was featured in a CNN interview. In May of 2014, he performed his original song on stage at the “Shaky Knees Festival” in Atlanta with the legendary Tommy Stinson.

As part of acute lymphoblastic leukemia regimen, many kids have to be on a long-term high dosage of steroid, which in our case had led Nicholas to a bone condition called “Osteonecrosis.” Many of patients over age of ten will have to follow adult treatment regimen and according to our oncology team, it is very common for this age group (especially male patients) to have joint replacements during or shortly after their end of treatment. This is all another reason that research and finding a cure for pediatric cancer is so important.

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CURE Childhood Cancer has been a great channel for kids and parents that are unfortunate to face this evil by themselves. During our hospital stays and clinic visits, we have witnessed all the fun events as well as generous donations that were sponsored by CURE. My family we thank CURE for their support and presence through the darkest era of our life.


September 15th, 2014

CURE Childhood Cancer Honors Creed Campbell

September is National Childhood Cancer Awareness Month. Join us today, September 15, 2014 as CURE Childhood Cancer honors CURE Kid Creed Campbell. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Creed’s fundraising page. 

Creed entered this world 11 weeks earlier than expected. Weighing only two pounds, he had a lot of catching up to do. He arrived home after 91 days in the NICU only to return back to the hospital for another extensive stay.

This seemed to be the beginning of what his life would be like. For the next five years it was just that – in and out of the hospital. Never knowing what the root of the problem was. Always treating the symptoms, but never being able to figure out really what was going on.

In January of 2010 we found out that Creed had a blood disorder called Myelodyplasia / Monosomy 7. The only treatment for this was a bone marrow or stem cell transplant. In August of 2010, Creed underwent intensive chemotherapy and total body irradiation in preparation for the transplant. The next seven months were spent at Egleston Children’s Hospital.

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He was completely cured from the disease after the transplant, but did encounter many issues that were again unexplainable. These issues eventually caused him to earn his wings at age seven on April 15, 2012. Creed never let this life get him down and was a fighter until the very end.


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    JOIN US! CURE'S KIDS CONQUER CANCER

    Would you like to share your child's story as part of our fundraising event, CURE's Kids Conquer Cancer One Day at a Time? Click here to learn more or email Lisa Branch at lisa@curechildhoodcancer.org.

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    10th ANNUAL "A TRIBUTE TO OUR QUIET HEROES"

    Tickets are on sale now for the 10th Annual luncheon celebrating the mothers of children diagnosed with cancer. Join us Saturday, September 27th at the InterContinental Buckhead. Click here to purchase tickets or learn more.