Supporting a Teenager on his Journey to a Bone Marrow Transplant
REMOVING BARRIERS: JAKE’S STORY
Columbia Station, Ohio
Meet Jake and his sister Bella.
Jake is a brave boy who fought a difficult journey with acute myeloid leukemia (AML). After being diagnosed with this aggressive form of blood cancer, he received treatment and went into remission. But then he relapsed and urgently needed a bone marrow transplant.
Luckily, his younger sister Bella was a matching donor, and Jake received a transplant.
Throughout treatment, Jake and his family faced many hardships. These included the financial strain of his mom having to stop working, and the need to stay at a Ronald McDonald house to be close to the hospital.
During recovery, Jake experienced painful mucositis that made it hard for him to eat.
Thanks to the IclaCares program, Jake and his family received much-needed assistance with meals and groceries. Your support helped reduce some of the stress and allowed them to focus on Jake’s recovery.
Felipe Mendonca shares the story of his mother’s survival from blood cancer, and the three life lessons he learned from the ordeal.
In April 2013, I received a desperate, tear-filled call via FaceTime from my mom.
Initially, I thought she was missing her only child. I had moved to NYC just a few weeks before.
While she did miss me, that was not the reason for this call. I saw that she was crying and she told me, with excruciating pain and fear, that she had been diagnosed with chronic myeloid leukemia. She was afraid of dying.
With that phone call, I knew our lives would be changed forever. Obviously, the long distance didn’t help.
The uncertainty of the disease was heartbreaking and my helplessness grew every day.
Fortunately, with the help of many friends, doctors, and our super small family, she plowed through the darkness. The fear, anxiety, and the disease itself did not discourage her. My mother is a relentless fighter.
However, the bigger challenge came almost a decade later.
On Thanksgiving Day last year, I received a very simple, but unusual text message from my mom: “I need to talk to you”. Within five minutes, we were both crying on the phone, unsure again of what the future would hold.
She could no longer grasp a glass of water by herself anymore. Taking a shower proved impossible.
After some internal debate, and with the unwavering commitment and support of my lovely wife, I took the next flight to Brazil.
The First Fight
What I saw crushed my heart. My dear mother had lost significant weight. She could not stand up any longer, extremely tired due to acute anemia. She could not sit down comfortably either, because she had a piece of her hip bone extracted for bone marrow work and analysis.
Just laying down was challenging due to numerous other complications.
Here I was, a 34-year-old son, looking at the very person that has always been my safe haven, my rock, and I was utterly useless to provide comfort or help. Her situation deteriorated to such a point that we had to hospitalize her.
After being hospitalized, she fell inside the hospital bathroom and hit her head. The fall caused blood to almost reach her brain. She became infected with COVID-19, got pneumonia, fungus in both of her lungs, and of course, leukemia.
The Second Fight
My mother was transferred to another hospital, with a new medical team, and immediately accepted into the ICU. The doctors were already preparing me for the worst.
I could no longer have direct contact with her since she was in the COVID ICU. I could only talk to her over the phone and through a window.
I saw life going away.
At that moment, I remember pausing and taking a very deep breath to ask for help. Please guide me; what can I say or do that would help get her out of that bed and back into my arms?
I told my mother, “I have done absolutely everything I could to help, and I continue to feel incredibly helpless. I cannot imagine my life without you. I cannot imagine seeing my WhatsApp chat, sending a text, and not receiving a response back because you won’t be there. I can’t accept this. I’m not ready for this. I need you to fight. I want you to fight. If not for you, do it for me”.
Believe it or not, she was out of the ICU in 4 days! Somehow, her super-mom powers were provoked! I was ecstatic! One big victory.
But not the main victory – the leukemia was still there and kicking.
The Ultimate Fight
Now we were off to the races to find a matching bone marrow donor. Unfortunately, I could not be her savior. Tests came back showing that I could create more harm than good, so we focused all of our efforts on the global registry.
We were blessed with a Brazilian soulmate.
We spent 49 days together, locked in a room, sometimes not being able to see daylight. It was tough, it was very challenging. None of us could sleep well. I only had so many clean clothes to were. Whatever I brought in my carry-on bag.
But none of that mattered, because, on July 5, she received her life-saving bone marrow transplant and is now in full recovery mode.
Thanks to the tireless work of her medical team; all the nurses, dentists, nutritionists, physical therapists, and cleaning team! And yes, thanks to that generous soul that stepped up to donate and save another life!
Why am I telling you all this? Because I wanted to share just (3) of the profound life lessons I learned during the darkest days of my life so far:
Life Lesson #1: Don’t take life for granted. Do not wait until you are inside a hospital room to live, to be grateful for your health, your clean clothes, your food, and your family.
Life Lesson #2: Don’t take your closest friends and family for granted. They won’t live forever. Be there for them, all – the – time! I had two of my best friends call or text me every single day during this 9-month period. One of them drove five hours unannounced, simply to give me a hug and show he cared.
Life Lesson #3: Don’t take actions for granted. Be generous and show your unwavering appreciation to everyone that supported you and your family. I was humbled by the life stories that my mom’s nurses shared with us and I went out of my way to make sure each and every one of them knew how much I appreciated their dedication
This is just a very abbreviated version of everything that happened to my mom in the past 10 years. One single life story. But can you imagine how many more lives are disastrously impacted daily by cancer?
I decided that I wanted to be a force for good, to spread good vibes, and have a positive impact on lives that are, at some point, like me in that ICU unit window – helpless, alone, afraid, and desperate for a miracle. I want you to be part of this force for greatness with us.
Very small acts of kindness go a long way (that hug from my friend that drove 5 hours was priceless).
I promised myself that if my mom survived in good spirits and health, I would run the Miami Half Marathon in January 2023 and fundraise to help increase awareness around bone marrow transplants. Through the recommendation of Dr. Luis Fernando Bouzas, the head of my mom’s medical team (and former General Director of the most prominent cancer institute in Brazil, INCA).
I have chosen the Icla da Silva Foundation as the recipient of all donations you will make throughout this process.
The Icla da Silva Foundation saves the lives of patients with diseases whose only cure is a bone marrow or cord blood transplant by providing emotional, logistical, and financial support to remove barriers to treatment.
For patients who demonstrate financial need, the Foundation provides financial assistance as patients work through their bone marrow, cord blood, or stem cell transplant and treatment.
They are a 501(c)(3) organization and all contributions are tax-deductible to the fullest extent of the law.
Thanks for being a part of my journey to give back and help others.
Written by: Felipe Mendonca
One-Year-Old Boy Receives His Life-Saving Transplant
We were able to remove several barriers during his journey to a cure.
John was diagnosed with leukemia as a 2-month-old baby.
Obviously, his parents were concerned. They needed help understanding all the information about options and challenges. They weren’t sure what to expect or how to navigate the process.
They wanted the details in plain language.
The Icla da Silva Foundation helped John’s family overcome their first barrier.
With so much time traveling to receive treatments, and with so many tests and appointments scheduled, it was impossible for them to keep a regular work schedule. The family had a hard time making ends meet.
This was their second barrier.
Thanks to our generous supporters, we were able to provide funding to assist John’s family with housing needs.
By removing this barrier, his family was able to focus on treatment.
We are happy to report that John recently received a cord blood transplant. His body has accepted the new cells.
(watch a :30 video of his transplant)
We wish this little boy a happy, healthy life; a life that every child deserves.
Our supporters played an important role to ensure that another life was saved.
If you haven’t donated recently, please consider making a gift to help more patient families like John and his parents.
It required a coordinated effort of logistics, financial assistance, and of course emotional support to create this life-saving journey.
You may remember a young patient we worked with named Victor Garcia. At the age of 9, Victor was diagnosed with acute biphenotypic leukemia (BAL), a rare form of leukemia. He was being treated at a hospital in his home country of the Dominican Republic. His doctor determined that the only cure for Victor was a bone marrow transplant from a matching donor.
But there was no matching donor on the registry.
Since siblings represent the best chance for a match, the Icla da Silva Foundation was able to fund HLA testing for his 7-tear-old sister Neyyleyn.
We were happy to find out that Neyyleyn was a 100% match for her brother Victor. But unfortunately, the local hospital did not have the resources to perform the transplant.
Emotional, Logistical, and Financial Support
The Icla da Silva Foundation went into overdrive. We supported Victors’ family and helped coordinate his transplant under a clinical trial at Yale New Haven Teaching Hospital in Connecticut. Our team worked the logistics between the family, the doctors, and the consulates from both countries, assuring that Victor would be able to receive a life-saving transplant.
Thanks to financial support from donors like you, we were also able to fund transportation for the Garcia’s to the United States, while the Ronald McDonald House graciously provided housing.
It took many steps and multiple partners, but a little boy’s life was saved. The Icla da Silva Foundation is both proud and happy to have played a critical role.
Victor is doing well, he is back home in the Dominican Republic; going to school and playing baseball.
You can help us create more life-saving stories like Victors. Please consider a financial contribution to our Icla Cares program.
Mikey met with his pediatric CML specialist a few weeks ago and he is doing great! The tyrosine kinase inhibitors (his TKI medication) are working and his chronic myeloid leukemia levels are very low. He starts school next month and his family is very happy.
We are happy also. Way to go Mikey!
Mighty Mikey Sexton – May 16, 2018
Did you know that an orange ribbon promotes leukemia awareness and shows support for leukemia survivors and their family and friends? Orange also happens to be Mikey Sexton’s favorite color. It’s a strange coincidence because seven year old Mikey was just recently diagnosed with CML (chronic myeloid leukemia) and is in need of a bone marrow transplant.
CML is a rare form of blood cancer that typically affects older adults, so it is rarer still to be diagnosed with CML as a young child. It begins in the blood forming cells of the bone marrow, and eventually spreads to the blood. CML is a fairly slow growing leukemia, but it can also change into a fast-growing acute leukemia that is hard to treat.
Mikey’s Mom & Dad
Mikey’s father, Mike Sexton, who is a corrections officer and volunteer fireman says, “he was really tired, kind of pale, and not really acting like himself.” After his diagnosis, and a week at the hospital, Mikey spent 2 weeks at home taking oral chemotherapy drugs.
Mikey and his brother
His doctors believe that a bone marrow transplant will be his only hope for a cure. Mikey’s younger brother was tested, but he is only a 50% match.
This is where the Icla da Silva Foundation steps in. Patients like Mikey, who need a transplant, rely on us to help them find a matching bone marrow donor. We have begun working with Mikey’s family to schedule marrow drives, asking people to join the Be The Match bone marrow registry. You can join the registry by by attending one of our drives, or you can join online, providing basic contact information and some medical history. Be The Match sends out a swab kit, with simple directions to capture your HLA type, and you will be entered in the registry with the hopes of matching a patient in need of a marrow transplant.
There are more than 14,000 patients with various forms of blood cancer who can be saved if they are able to find a matching donor. The online process to join the registry takes 8 minutes. If you match a patient and agree to become a donor, the gratitude and understanding that you saved a life lasts a lifetime.
You can join the registry in honor of Mikey right here, you may be his match.joIN the registry
Another way that you can help is by spreading the word about Mikey’s story. You can share this story by using the links below, and ask your friends to consider joining the registry. If you have access to a larger group of people – through an employer, a club, a school or a church organization, you can host a drive in honor of a patient. We do most of the work, you simply have to fill out the request form here and make the introduction.
You can also help the family directly by making a donation to their personal gofundme page.
Mikey was deemed healthy enough to go back to school, and he couldn’t be happier. This video from his hometown Spectrum News, shows the overwhelming support received at his elementary school.
Warm Welcome to Classmate Battling Leukemia from Spectrum News
Mikey is a sweet boy who loves being with his friends. Although he was very excited to return to school, his parents have decided it would be best for him to attend ½ days, since Mikey is physically exhausted and can’t make it through a full day.
He likes reading, playing hockey and being a tiger scout…and of course, he also loves the color orange. We have high hopes for a matching donor, and when the time is right, a successful transplant. Keep going Mikey!
PATIENT UPDATE: Mission of Joy – Creating Superheroes
In early July of 2017, Aashim Joy was diagnosed with ALL (B-Cell Type Acute Lymphoblastic Leukemia). His only hope for a cure is a matching bone marrow transplant, and we first reported his story here.
Aashim is currently in remission, which is good news, at least temporarily. For leukemia patients undergoing chemotherapy, remission means that there is ‘less’ cancer in the body. Unfortunately, the chance of a relapse, or a recurrence of cancer, remains high and it is important that they maintain their treatments, and continue their search for a matching bone marrow donor.
Aashim Joy lives up to his name, literally. He is in good spirits, always positive and usually ‘joyful’. He is very focused on spreading the word about joining the registry and supporting patient services.
Spreading Awareness / Creating Superheroes
Recently, he attended and spoke at our 5K in NYC, he also talked about his journey at our Mix & Match event last month. If you attended either event, you heard Aashim speak about becoming a superhero. He is on a mission, he wants to create superheroes. He is devoted to educating as many people as possible about the importance of registering to become a bone marrow donor, and staying committed if you are identified as a match for someone. He wants everyone to understand how meaningful it is to save a life and thus, how easy it is to become a superhero.
Working with bone marrow patients for the last 25 years, we know he is right. We understand that reaching out to friends and posting on social media does not generate the numbers necessary to save the many lives who are in need of a matching donor. Try as we may, enough people don’t understand how simple the process of registering is. They fail to recognize that the vast majority of bone marrow donations are neither painful, nor invasive. As Aashim says – “There are a lot of misconceptions associated with bone marrow transplant, and most folks don’t really feel it’s worth the effort to wake up on a Sunday morning and register as a donor.”
Aashim, along with his beautiful and intelligent wife Reema, stand behind this mission, to raise awareness and increase support. From their apartment in NYC, Aashim and his wife have spearheaded many bone marrow drives throughout India. His friends at Deloitte put together a fundraising team and participated as ‘Run For Joy’ in the MatchMaker 5K. Aashim even donated his birthday to the Icla da Silva Foundation, helping our efforts to provide more patient support services to those in need.
Supporting and Fundraising
Aashim donated his birthday by setting up a simple donation page. He went to www.icla.org/get-involved and clicked on “Fundraise with Us.” From this link, he easily developed an online fundraising page. Aashim wrote a short paragraph about his experience, and then posted the link to his Facebook page, inviting his friends and followers to get involved. The fundraiser lasted until his birthday, and raised 120% of the goal! Thank you to Aashim and all his friends and family for taking this extra step to ensure that more patients who need a bone marrow transplant can find a match. You are all superheroes and you are all saving lives!
It’s so easy to start a fundraiser for the Icla da Silva Foundation. Follow the same steps as Aashim, customize your fundraising page, and share with your friends and family. It doesn’t have to be your birthday to get involved. Whether you’re running a marathon, remembering a loved one, or celebrating an anniversary, any time is a good time to be a superhero and help save lives.
You can be a Superhero!
Everyone between the ages of 18-40 can be a superhero. Start by joining the registry in honor of Aashim https://join.bethematch.org/gettestedforjoy. If you want to make a donation to Aashim’s birthday fundraiser, you can still do so here.
Thank you to Aashim, and his wife Reema, for your continued efforts to spread awareness about blood cancers and the power of joining the Be The Match registry; saving a life can make anyone a superhero.
Renata Has Faith
Renata Coimbra is full of life. She is always smiling and spreads joy wherever she goes. She is very close with her family and friends, she worries about those less fortunate, and she regularly contributes to her church and her community. She is recently married, a positive role model, and faithfully leads others in prayer.
Renata was recently diagnosed with leukemia and is in desperate need of a bone marrow donor. She has begun an aggressive treatment of chemotherapy and she knows that she has a long and difficult path ahead, but she has faith that she will find a matching donor.
In 2001, she moved from Espirito Santo in southern Brazil, to Boston, Massachusetts, where she worked as a house manager and loving nanny for 13 years. Missing the tropical climate of her childhood, Renata moved to Florida in 2014, where she met and married her love, Danilo. Together, they enjoy music and movies, regularly attend church, and spend time with Danilo’s family, who has accepted her as their own.
Late last year, Renata was suffering from shortness of breath. After multiple visits with doctors and specialists, she was unexpectedly diagnosed with a lymphoma that had formed in her chest and attacked the bone marrow. It quickly developed into leukemia. She has been told that even with chemo treatments to fight the cancer in her blood, a bone marrow transplant will be necessary to ensure her survival. After multiple treatments and two hospitalizations in the short timespan since she has been diagnosed, she has been forced to quit her job and live a remarkably different lifestyle.
Before she got sick, Renata and Danilo enjoyed dancing and going to the beach on weekends. Although she misses work and her Zumba class, she has never lost faith that she will overcome this disease.
Renata’s faith is overwhelming. Early in the search, they found three matching donors. Unfortunately, none of them were ready to make the commitment to donate. Renata insists that she has the support of God, friends and family, and a matching donor will come through.
While we certainly hope that everyone who registers is able to stay committed if they ever receive the call, it is important to recognize that the vast majority of bone marrow patients require a non-surgical process called peripheral blood stem cell donation (PBSC).
A PBSC bone marrow transplant requires a donor to take injections of filgrastim over the course of 5 days, which increases the number of blood forming cells in your blood stream. On the day of donation, your blood is removed through a needle in one arm, passed into a machine that separates the blood forming cells that your body has produced, and then your blood is returned back into your body through the other arm.
The process is relatively simple.
Please consider registering to become a potential bone marrow donor for Renata and the many other patients who are looking for a match.