Support for Carlos and Lymphoma Society

Hello friends and family.
Below, you will find a short version and a more detailed version of what is going on with Carlos. If nothing else, we are happy to share his story with you in hopes you can keep sending positive energy and prayers his way as he takes on this new clinical trail in two weeks. We appreciate all of your support during this time. It has been hard on all of us. Dain and I miss Carlos everyday and we're hoping for a cure so that we can bring Carlos home cancer free!
Thank you. 

Leigh

PS. If you're local, join us as we workout in Carlos's honor May 11th: https://www.facebook.com/events/2497960337101680/




Carlos's Story (short version):

Carlos has been fighting a battle with Non Hodgkins Lymphoma for about 6 years now. For many of you, this may come as quite a shock since Carlos has fought pretty silently throughout the years. I have recently started to share more about his journey over the past year as we felt that our loved ones should be in the loop with what is going on. 

Carlos has been constantly battling to get his cancer under control and into remission. He has undergone multiple sessions of chemotherapy, countless surgeries, and an 18 month long clinical trial at the Moffit Cancer Center with a shockingly bad end result. He has been yanked from his life and his career numerous times since 2013 while fighting this nasty disease. Now it has has returned with a vengeance, with no hope of normal treatment. 

Carlos has been accepted to another clinical trial at the Moffit Cancer Center called Car T cell protocol. This time we are hoping and praying for a cure so he can return to living a normal life! 

Carlos has been prepping for this trial over the past few months with extensive testing, biopsies, blood work, mental evaluations, and counseling. He has been away from his family for months and had to be put on another leave of absence from work during this time. This process will begin on May 13th with an intense dose of chemotherapy (5-9 days), cell infusion (7-14 days in ICU) and 24 hour after care (2 weeks minimum). If all goes well, he can return home. 

Each time Carlos's cancer returns, he is placed on disability which does not cover his finances. It is an immediate shock to his life and a huge stressor during a time when he should be focused on healing. Somehow, he manages to stay strong throughout this process, but the constant financial burden takes a huge toll on him. While he is forced to deplete all of his savings and many assets, he worries that all will not be well when he is finished.

Carlos has multiple doctors' bills piling up and was recently required to prepay for his aftercare housing and expenses for May AND June. Over the last 6 years, he has even had to drain his entire 401k to cover his medical costs, penalties included. He keeps starting over in order to find a cure, but the cure has yet to come.

He is taking a big risk with this trial, since it is new and nothing is promised, and he has yet again been removed from his family, career, and all normalcy to be a part of it. As you know, Carlos is a very strong person, mentally and physically, but there is only so much a person can take with this amount of stress and concern. He wants nothing more than to continue his healthy life and watch Dain grow up!

Our family and friends encouraged me to start this Go Fund Me. I figured if nothing else, I could at least share Carlos's story to those of you who love him and would like to reach out in some way. Cancer is always a financial burden, no matter who who are. My husband spends his days healing people - we can only pray that he gets the healing that he needs to spend the next 50 years making the world a better place. If anyone deserves a fresh chance at life, you better believe its him.

If you are interested in donating a small amount to help Carlos return to a less stressful life once this is over, please do so! We will donate anything leftover after bills to the Lymphoma Society.

If you cannot donate at this time, thank you so much for taking the time to read this. Keep Carlos in your thoughts and prayers over the next few months! We will keep everyone updated as we move forward. 




Carlos's Story (a more detailed version):

Carlos was diagnosed with Non Hodgkins Lymphoma 6 years ago and his life was forever changed. While at work, he doubled over with sudden pain in his side and was rushed to the emergency room. While the doctors thought he was having a heart attack, his scan showed differently. A 9 pound tumor resided inside Carlos's body. It was wrapped around his abdominal aorta making it in-operable. The cancer grew large enough to stretch his spleen, which swelled to the size of a football causing his pain to progress from a 0 to 10 in a matter of hours.

Carlos was under a lot of stress at the time. The recent weight gain and swelling around his belly was chalked up to stress. We all noticed a change in his appearance and energy levels; again all was blamed on stress. He began changing his diet just weeks earlier in attempts to lose the weight, not knowing that he was carrying around a tumor.

Carlos was immediately placed on treatment; he began chemotherapy with in a week of his diagnosis. He was expected to undergo 12 chemotherapy treatments, radiation, and de-bulking surgery.  I was desperate to help and asked the doctor what I could possibly do. He told me to watch two documentaries: Fat Sick and Nearly Dead and Forks Over Knifes on Netflix. We quickly learned the art of juicing for health and dove right in. I made fresh juice for Carlos 3 times every single day in order to be sure that he got his nutrients even when the chemo made him too nauseous to eat. When the chemo started to affect his skin, we woke up before the sun came up to walk the beach for fresh air and exercise. Together we gave up eating in restaurants, sushi, rare meats, over easy eggs, soft cheese, and wine so he didn't get sick with his depressed immune system. (no one should have to give up those things alone!) He did everything he could to beat it! 

Carlos's chemo went even better than expected! After only 6 treatments, his cancer was ALMOST GONE. He no longer needed the radiation or de-bulking surgery. His doctors were certain that he would be in remission for a very long time, since other than having cancer he was now healthier than he had ever been before.

A few months later during a routine scan, his doctor noticed that his appendix was swollen. He assured Carlos that this was surely an incidental finding, as that happens from time to time with frequent scans. When Carlos looked at his own scan, he noticed that the lumen to his appendix was clear - in a normal case of appendicitis, the lumen is blocked causing the appendix to burst. I told him to shush, and let his doctors do their job. Welp, guess which doctor was right? Dr. Lopez.

When they removed Carlos's appendix, they biopsied it and it was full of cancer. His lymphoma was upgraded to Stage IV since it was now in his bone marrow and another organ, his intestine. This was turning into a very special case. They presented the information to the hospital board because his was not typical at all. Back on chemo Carlos went. The chemo worked; Carlos returned to his life.

A few months later, Carlos noticed a swollen lymph node in his neck. Our hearts dropped once again.  It got larger and larger by the day; within a week it was even noticeable to me. His doctors grew even more concerned. They said that even though the chemo had worked thus far, they are fearful that if they keep using it again and again, Carlos's body will either become immune to it or it will harm him in other ways. They agreed that Carlos should take a trip to the Moffit Cancer Center in Tampa to discuss his options for a clinical trial. 

Carlos and I were presented with two different trial options at Moffit. One trial involved taking a pill each day, treating the cancer like a chronic disease. He would get a monthly infusion and take this pill every morning which kept a small amount of chemo in his body in order to keep the cancer from growing. The other trial was called Car T cell protocol; this was a little more risky as it involved a long hospitalization and harsh side effects. We all agreed that Carlos should try the trial with the pill.

Carlos had to undergo chemo once again in addition to extensive testing and evaluations. He flew to Tampa every two weeks on his days off for blood work, tests, infusions, and pills. Guess what? It worked. For nearly 18 months, Carlos's cancer did not return. Carlos got used to the side effects. He learned to live with the severe joint pain and low energy that no amount of caffeine could bring back. He woke up every morning to take the pill at 5 am since he had to wait two hours before eating. The pill made him  extremely nauseous so he tried to fall back asleep to avoid throwing up every single day. He stuck to his new regimen 100%; he would do anything as long as he remained cancer free. He forced himself to exercise and act in public like nothing was bothering him. Many people in his immediate life never even knew he had cancer in the first place.

In October 2018, Carlos had his routine blood work and was sent straight to the hospital. They didn't even check him in through the ER; he was wheeled straight to the transplant floor because he needed to be in a sterile environment. His white blood cell count was 0 meaning he had no defenses. This was a complete shock.

I think at this point, we ALL (Carlos, myself, our families, his doctors) were trying not to believe that this was due to the trial pill he was taking....although that is what was in the back of our minds. It was keeping the cancer at bay with this pill, so the last thing we wanted is for him to have to stop taking it! The doctors said he could have a virus, an infection, or some other factor causing his blood count to drop. They immediately started testing him for everything under the sun...I mean everything! I am happy to say that my husband is as healthy as a horse (minus the annoying cancer problem). Well, that was actually bad news. We were hoping for the flu? After weeks and weeks secluded in the hospital they finally concluded that the trial medication caused him to develop an auto immune disease that was killing his white blood cells as they were made. Since you can not live like that, and he refused to live like "the boy in the bubble" as I had suggested, he was kicked off the clinical trial. They scanned him at this point and he was still cancer free.

8 weeks later, he had another routine scan that showed that his cancer had come back with a vengeance. 8 weeks without his "magical pill",  cancer managed to grow in Carlos's neck, around his heart, all throughout his abdomen, and in his groin. It was only 8 weeks after a clean scan and he was yanked from his life once again.

We headed back to Moffit to enroll him in that "risky" trial I mentioned earlier. It's called Car T. Basically, they poked and prodded him again with heart tests, vision tests, psychological testing, biopsies, blood work, and more. Then, they admitted him to the hospital to remove his blood to gather the t-cells. They sent his cells to a lab to genetically modify them into mini cancer fighting machines. They will soon infuse the cells back into his body to fight off the cancer from the inside. On May 13th, Carlos will officially begin the trial process which he has been prepping for over the last few months. He will be admitted to to receive intense chemotherapy for 5-9 days. Then, he will be admitted to the ICU where the cell infusion will begin. This will take from 7-14 days depending on well he handles the infusion. When he is finished, he will need 24 hour care for several weeks since he will not be able to care for himself. The risky part? As the t-cells fight the cancer, the toxins will be released so rapidly that he could suffer from brain swelling. They will be monitoring him in the ICU to control this of course. He has the possibility of experiencing aphasia, meaning he may wake up very confused. This is why he will require 24 hour care until he recovers. 

We are so very fortunate to be surrounded by such an incredible support system. Both of our families and friends have been there for us every step of the way. You can't imagine the smile that that spreads across Carlos's face when someone makes a kind Facebook post or gives him a "hell yeah" when he is going through these procedures. I can't thank you all enough for following his journey back to health. All of the positive energy, prayers, and even the jokes have pushed him through some very tough times!

If you have the pleasure of being around Carlos often, you would agree that he is AMAZING. He does everything in his power to live his normal life without showing a glimpse of his pain. I have personally never met a stronger human being, mentally or physically. He is determined 100% to beat this thing, and I know that his positivity has carried him this far. He fully intends on walking out the door of Moffit in a few months, and back to work in another hospital saving babies where he belongs. If you don't know this already, Carlos is a neonatologist. He spends long hours (24-48 at a time) literally saving babies lives. He helps family after family get through their own tough times. He cares for the innocent children who come into this world fighting for their own lives. He loves his career so much; not being able to work is one of his greatest devastations. 

This past 6 years has been a roller coaster of physical, emotional, and financial stress for Carlos and I. Each time his cancer comes back, he is unable to work. On top of it, he has travel expenses to pay for and deductibles to meet. Needless to say,  things have been more than tight for our new family of 3. This last diagnosis hit us like a ton of bricks. Our family solely relies on Carlos's income. 

Our family and friends encouraged me to start this Go Fund Me. I figured if nothing else, I could at least share Carlos's complete story to those of you who love him and would like to reach out in some way. Cancer is always a financial burden, no matter who who are. My husband spends his days healing people; we are praying that he gets the healing he needs to spend the next 50 years making the world a better place. If anyone deserves a fresh chance at life, you better believe its him.

If you are interested in donating a small amount to help Carlos return to a less stressful life once this is over, feel free! We will donate anything extra left over after bills to the Lymphoma Society.

If you can not donate at this time, thank you so much for taking the time to read this. Keep Carlos in your thoughts and prayers over the next few months! We will keep everyone updated as we move forward.