Evan’s Story

Evan has joined the angels on April 13,2013. He fought a year long heroic battle against AML. God had a plan and purpose for Evan and chose him to enter heaven for another purpose. His story- April 22, 2012, Evan (5 yrs old, 6/11/12) was diagnosed with Acute Myeloid Leukemia which required 4 rounds of inpatient chemotherapy. September 4, 2012, Evan concluded all treatment and was in remission! But on January 4, 2013, he relapsed with AML in the testicles. It then spread to his bone marrow and his right eye; lost vision in that eye. Then a mass in his back. It kept spreading. He was now chemo resistant. Evan has impacted so many people; a true inspiration! As his mother, I couldn't be prouder! We thank you for the support, thoughts and prayers.

Sunday, April 15, 2012 Evan was diagnosed with an upper resp infection, strep throat and tonsillitis. Tuesday, April 17, 2012, the fever was back again. We returned to the doctor; diagnosed with pneumonia. Thursday, April 19, 2012, Evan was walking very strange, as if his legs hurt. I saw some bruising and the fever was back. The doctor gave him a breathing treatment, steroid shot and an antibiotic shot with more antibiotics. The doctor said we needed to return to our pediatrician if Evan still was not feeling well by Monday. She was concerned about the swollen lymph nodes in his neck and the pain in his legs; she said they look for Leukemia or Lymphoma if symptoms persist for a week. Saturday, April 21, 2012, I took him to the ER, due to fever and he could not walk at all. They ran blood work and tests. He was admitted that evening. Sunday, April 22, 2012, our Pediatrician was on call. He believed this was Leukemia and wanted to complete a bone marrow test that day. As we waited for information about the procedure, the Hematologist walked in the room. My father and I sat there as he told us in front of Evan that my child had Leukemia. They would have to start chemotherapy as soon as possible. He suspected it was AML, Acute Myeloid Leukemia. They needed to act quickly to save Evan's life. We were also told that Evan had a VERY RARE FORM OF AML; he has a 3 chromosome trans-location (2, 10, and 11). This has never been documented prior.

Evan started 4 rounds of inpatient chemo for four months. The first month he was in the hospital for 30 days. He was very sick and admitted into PICU. The next 3 months of chemo went very well. Evan did not have many side effects. He was discharged quickly after chemo and did not return to the hospital as most do, mainly due to infection or high fevers. Doctors discussed bone marrow transplant with us. Evan's older brother was tested, but Zach is not a match for Evan. After meeting with CHOA Bone Marrow Transplant Team, Evan does not have a match world wide; cord blood transplant would be the best option. We decided against transplant at that time. On August 5, 2012 at 3 AM, Evan finished his last dose of chemo. Evan had done fantastic throughout chemo treatments. Four rounds of chemo which started on April 26, 2012. A total of 29 days of chemo every 12 hours.

On January 4, 2013, we felt the need to take Evan to the oncologist because he was having eye pain, headaches, strep throat and now a fever and vomiting. They decided to do a spinal tap (rule out relapse in the spine/CNS) and a bone marrow test. His CBC, Spinal test and bone marrow tests were perfect. After sedation from these tests, the oncologist decided to check his testicles. He felt a large mass in his left testicle and ordered an ultrasound. We waited to hear what no parent ever waits to hear again...Evan has relapsed with AML in his testicles. They were showing a large leukemic mass in his left testicle and 2-3 smaller masses in the right. We decided to start isolated radiation after the biopsy which confirmed AML in the testicles. One week after, they completed another bone marrow test and spinal tap with chemo injection to prevent relapse in the spine/CNS. This bone marrow test confirmed AML in the marrow (blood). At this point we decided to relocate to CHOP (Children's Hospital of Philadelphia) immediately. When we arrived, we met with the AML specialist, Dr Aplenc, and spoke about options for relapse. We also mentioned the eye pain that had been concerning me for weeks. Literally, we were on course for chemo and bone marrow transplant ASAP. Dr Aplenc completed a bone marrow test the next day which confirmed it was in his marrow (went from 5% to 30% in one week - meaning that the leukemia was now affecting 30% of his cells). The next day, Evan's eye was in extreme pain and swollen. He was referred to the Ophthalmologist. Next we were told that our son had Leukemia in his right eye and had lost vision in that eye. The next day, Evan was admitted and went through 3 rounds of sedation. First to fit him for a helmet for radiation to his eye, then to place his central line in his chest and complete an MRI of his head, then to start his first session of radiation to his eye. Evan received radiation to his eye everyday for 12 sessions. The Leukemia was all around his muscles in his right eye as well as the optical nerve (caused the loss of sight - stroke of the eye) and 3 spots on the brain. This is the first time any doctor has seen a stroke of the eye due to Leukemia. Evan will continue chemo again, radiation and be prepared for a bone marrow transplant. We pray for remission again and a cancer free life; A CURE!!! He has become an inspiration to so many! We are so proud of him! Love you Love Bug! We still ask that you become a bone marrow donor through "Be The Match". EVAN STILL NEEDS A MATCH! He's a Fighter and will BEAT THIS!!!!

Latest Journal Update

6th Annual CURE’s Kids Conquer Cancer Initiative- Evan's Day (September 12th)

6th Annual CURE’s Kids Conquer Cancer Initiative everyday during September for National Childhood Cancer Month. Evan's officially day for 2014 is September 12th! Please mark your calendars and donate in honor and memory of Evan. His page link is listed below. CURE Childhood Cancer is the organization that sponsors this event every year. This is an imperative initiative to raise funding for research to find cures for children. There are 13 types of childhood cancer and countless subtypes of these cancers. 31% of these cancers are Leukemia, as Evan had (Acute Myeloid Leukemia - AML). I ask you to donate whatever possible to help the kids. Funding is critical to find cures! 46 children are diagnosed with cancer everyday and 7 children die of cancer everyday. Believe me, it's real. My child is an angel due to childhood cancer at the age of 4. I have copied an email from CURE below that shows what prior funding will be going to for 2014-2015. There are 2 grants specifically for AML and one of those is directly going to Evan's doctor at CHOP in Philadelphia, Dr Richard Aplenc, AML Pediatric Oncology Specialist. I couldn't be happier. Evan really impacted Dr Aplenc. So a very sincere thank you to him for continuing to research AML!

If you can't donate financially, please consider donating blood and/or platelets; every cancer patient needs both to survive; any and all blood types! Also, blood cancers such as Leukemia may be need lifesaving Bone Marrow Transplants. Please join the National and/or International Bone Marrow Registry, 'Be The Match'; this is a no cost registry. You just answer a few questions and give them a swab of your cheek. You can even have the kit sent to you free of charge. No costs involved! If you have questions, please contact me. I am now on the registry and I hope one day to be able to save someone's life. Evan didn't have a match worldwide, and many also do not. You could be the match that saves that one persons life! Please join! Www.bethematch.org



SEPTEMBER- Evan's Day (September 12th) - donations can be made any day now through the end of September. Our goal is $1,000. Thank you!!!

http://curechildhoodcancer.kintera.org/faf/donorReg/mobileDonorPledge.asp?ievent=1077641&lis=1&kntae1077641=89796BBCB24B4A1FB0E4A70B8BA1DFE8&supId=411063162&team=0&scWidth=320&extSiteType= />

Many thanks and blessings!

Evette (Evan's Mom)

CURE's Email about Funding Grants:

CURE Childhood Cancer is proud to announce our 2014-2015 Childhood Cancer Research Initiative, which includes a nearly $2.5 million investment in pediatric cancer research, critical research equipment and fellowship support. CURE's research initiative supports projects aimed at improving survival for the 20% of children who are not currently surviving today's methods of treatment. CURE's funds also support survivorship research, since we know the large majority of survivors face health challenges caused by their treatment by the time they reach the age of 40, as well as the training of fellows, future pediatric oncologists.

More than half of CURE's funds are supporting research at the Aflac Cancer and Blood Disorder's Center at Children's Healthcare of Atlanta and the Winship Cancer Institute at Emory University. Funds will also support top researchers at other leading institutions, such as Children's Hospital of Philadelphia, MD Anderson Cancer Center, Memorial Sloan Kettering Cancer Center and Seattle Children's Hospital.

"In our mission to cure childhood cancer in our lifetime, CURE continues to partner with some of the country's best scientists. Together, we are working to develop more effective, less-toxic treatments for pediatric cancer patients, improve the quality of life of childhood cancer survivors, and train the next generation of pediatric oncologists," states Executive Director, Kristin Connor.

CURE's 2014-2015 Research Initiatives include the following projects at the Aflac Cancer Center and Winship Cancer Institute:

$100,000 to Dr. Craig Castellino for the study of PPM1D in growth and treatment responsiveness of pediatric DIPGs

$49,665 to Dr. Jordan Gilleland and Karen Wasilewski-Masker for assessing physical activity and quality of life among pediatric cancer survivors

$105,000 to Dr. Kelly Goldsmith for the identification of novel therapeutics to restore chemotherapy response in high-risk neuroblastoma

$101,524 to Dr. LuBing Gu for targeting MDM2 and MYCN and anti-neuroblastoma drug discovery

$97,500 to Dr. Anna Kenney for research targeting medulloblastoma growth and radiation resistance

$102,000 to Dr. Melinda Pauly for a Phase 1 study of Dastinib in combination with chemotherapy for relapsed or refractory core binding factor Acute Myeloid Leukemia (AML)

$99,087 to Dr. Muna Qayed for a Phase 1 study of mesenchymal stromal cells for the treatment of acute and chronic graft-versus-host disease

$124,113 to Dr. Trent Spencer for the generation of anti-cancer CARs by lamprey-generated variable lymphocyte receptors for Lymphocyte Leukemia

$100,000 to Dr. Edwin Van Meir for targeting H3K27me3-medicated BAI1 silencing in medulloblastoma treatment

$103,402 to Dr. Muxiang Zhou for the development of novel AQ compounds as a molecularly-targeted and safe treatment for pediatric Acute Lymphoblastic Leukemia (ALL)

$100,000 to Dr. Zhengqi Wang and Dr. Silvia Bunting to research the significance of AF1q in pediatric Acute Lymphoblastic Leukemia (ALL)

CURE also awarded the Aflac Cancer Center $100,000 for a new metabloc flux instruments, as well as $151,647 to support two research fellows and $260,000 toward the endowment of a third research fellowship.

CURE also awarded the following grants:

$125,000 to Dr. Richard Aplenc at the Children's Hospital of Philadelphia for evaluating mitochondrial DNA and the role of its variation in the risk of relapse and toxicity in children with AML

$125,000 to Dr. Michael Hogarty at the Children's Hospital of Philadelphia for studying therapy resistance in neuroblastoma

$125,000 to Dr. Leslie Kean at Seattle Children's Hospital for an Abatacept Phase II clinical trial

$100,000 to Dr. Eugenie Kleinerman at MD Anderson for research combining NK cell therapy and aerosol IL-2 for relapsed osteosarcoma

$124,799 to Drs. Daria Valerio and Scott Armstrong Memorial Sloan Kettering Cancer Center for Combinatorial Targeting of Epigenetic Mechanisms in MLL-rearranged Acute Leukemia

$137,216 to Dr. Hanwen Zhang at Memorial Sloan Kettering Cancer Center for PET Imaging of Glutamine Accumulation in MYCN-amplified neuroblastoma