About 8 years ago, one of the greatest things happened to us. My wife and I had Santiago. Our son was born healthy and vibrant on April 3, 2011 at 11:36am. The following 4 years were blessed with the type of love and passion a person can never really imagine until they have a child of their own. Our days were filled with laughter, learning and unconditional love. We felt privileged to have Santiago come into our world bring meaning and a light that shined brighter than the sun.
Late 2015, Santiago started complaining about headaches. They would come and go but we never thought much of it. This continued until one day we noticed one of his eyes was turned inwards. He started complaining that he could not see. It was heartbreaking just to see him suffer from what we thought was a fixable solution as we were told by a seasoned eye doctor neighbor not to worry. My and I went off to celebrate my wife’s birthday gift to see Jennifer Lopez. As we were in bed in a different city, I was watching TV and my wife was looking at the nanny camera we had in our home to check up on Santiago. She saw him putting his hand over his eye to read. She immediately called the teacher at the house tutoring Santiago and asked her why he was covering his eye. She said that he was complaining that he couldn’t see. My wife was next red eye flight alone as unfortunately there was only one seat available. She arrived in the morning and directly took him to Bascom Palmer Eye Institute in Miami. My wife had me on Facetime right after the doctors looked at his eyes. They mentioned something I would never forget, “It could be a brain tumor.” I did not want to believe it. I asked many times “could it be something else?” We could see the terror and sorrow in their eyes when the said unconvincingly “it could be a virus.”
My wife immediately called 911 to take him to Joe DiMaggio for the MRI in an ambulance so they would immediately do the MRI on arrival. They admitted him and let my wife know that they would call her if it was a tumor as it was the end of the day. The ended up calling. My wife was in the room at the time of the call. The nurse walked in and said to her, “the doctor’s on the phone and he needs to talk to you.” She could barely walk towards the nurse’s station. When she took the phone, her hands were trembling. The doctor said it is a tumor and he was almost certain it was malignant. He asked her if she had any questions. She could barely speak and answer no. She hung up and had no idea how she was going to walk inside back to his hospital room where he was playing and laughing, having a good time with my brother-in-law and his grandmother. How could she possibly deliver news like this to anybody-- let alone to the most precious thing we had in our lives. She thought to herself, how would she deliver this news to me? She had no choice but to keep her silence so she could tell me first. I was still on the plane and had just landed in Miami when I immediately called my wife and asked “did you get the results?” Her answer was yes and she said it was a tumor and likely malignant. Our world crashed down on us. Our son was still running, talking, laughing and joking around like every other kid out there. Yet he had a deadly tumor growing rapidly inside of him.
THE FIRST SURGERY
It was one of the worst days of our lives. However, we knew we needed to act to remove the tumor given the pressure building in his brain. Within 24 hours, Santiago underwent a 7-hour surgery to remove the tumor. They confirmed it was a malignant brain tumor called Medulloblastoma. Devastation does not do justice to what we felt at the time. Our question to the surgeon - “Can it be cured?” The doctor answered “It can be, most of the time.” This gave us some hope and we started right away to research the next steps. The following day we had a post-surgery scan. We were in the ICU room and the doctor walked in with another person. He looked at us after some small talk, he let us know that Santiago’s cancer had spread to his spine. I personally do not recall this, but I was told that I looked like I was going to faint and I had to sit down. My head was cloudy and I could not understand what the doctors were telling me. My wife had to take over the conversation. After I put myself together, I rejoined the conversation actively. We knew that if it had spread that this would decrease his chances of a cure. Nonetheless, we remained focused on getting him the best treatment possible.
We immediately contacted St. Jude Children’s Research Hospital and were flown there within days of the surgery. They confirmed the diagnosis and that he in fact did have metastatic disease. We wanted to start treatment right away. As we sat in the Dr.’s office in Memphis, we were then told to our surprise that St. Jude’s state-of-the-art proton radiation machine was not ready to treat Santiago. Time was ticking and we needed to act. Proton beam radiation was told to us to be the safer option and would help preserve his ability to learn in the future. We wanted to make sure we gave Santiago the best life possible. While in his office, we started calling various contacts we had made prior to arriving at St. Jude and we found an option in San Diego to get Proton Beam under the St. Jude Protocol.
Soon thereafter, we were all on a plane to San Diego for the radiation portion of his treatment. We were extremely scared but hopeful we were on a path to get him cured. We spent the next 6 weeks in San Diego. The radiation treatment took its toll on Santiago but he was able to still smile, play and laugh just like a normal kid. It was nothing normal for us. It was terrifying. We witnessed our son receive massive burns to his head and spine. Santiago’s skin off would peel off his head just by my wife applying cream on it. She would often cry and scream “how could this be normal! It felt inhumane. However, he needed us to be there for him emotionally. There was little time for sorrow.
We left San Diego and spent about a month in Miami waiting for the next part of his treatment, which would be Chemo for 7 months in Memphis. During this period, we enjoyed our time in Miami, visited his school, St. Agnes, where they had saved his seat for him, and did our best to enjoy this “break”. He played and interacted with the kids as if nothing had happened. It was beautiful. While it was heart-wrenching to see our son struggle with the after-effects of the surgery (right side weakness) as well as the burns caused by the radiation, Santiago was his normal happy self, playing and joking around. We were thankful to be on the path to a cure and having Santiago be his normal happy self. We looked forward to the day Santiago would return back to his school and friends.
A LIGHT AT THE END OF THE TUNNEL
As we started chemo, fear filled our hearts again as we would need to start to inject poison into our son’s veins. On the first day of the first chemo infusion, the hospital staffers walked in with the chemo bag with their bodies covered in hazmat suits. We were terrified – it was something we never imagined or could have imagined happening in a million lifetimes. When the first drop hit his veins, my wife held our son like she has never held him before. Once again she said, “How can this be normal? How can this be ok? I am allowing them to put poison in my son’s veins! How cruel and beyond belief can this be?” Soon after the injections, our son’s body started to burn from his mouth to his anus.” He could not stand the pain. He would scream at mommy, “mommy please help me, mommy please help me.” And she could not do anything but put cream on his bottom and hold him with all of her heart and reassuring him everything was going to be fine, (very well knowing that this was not going to be fine and that it was going to happen over and over again over the next 7 months). His face of panic and eyes of terror will haunt us forever.
We were told his immune system would be wiped out and he would be in the danger of developing life-threating infections. We took every precaution and started the chemo treatment. Things seemed to be going as planned and Santiago was starting to walk on his own again. We enjoyed every moment we had laughing and playing with him every day. Our hope slowly filled our hearts again with the thought of the tumors being gone. After the second round, we were given the great news that there were no tumor cells detected in his spinal fluid. This was a sign that we were on the track to being cured. Tears of joy flowed out that day as we saw a light at the end of this horrific tunnel we were put into.
We started cycle 3 out of 7 and things were going as well. Right before starting his 4th round of chemo, we started noticing a fast decline in Santiago’s ability to move, talk and walk. We went in for an emergency MRI. We feared the tumor may have grown back. It turns out that Santiago had suffered from a massive brain stem injury due to the treatment he was given. He started having difficult breathing. The next several weeks were the low point of our existence. We saw Santiago go from a happy playful child, to one with a tube stuck down his throat barely alive. Just the thought of those images make us shake in horror.
At this point, Santiago was slowly losing all of his movements from the eyes down. He could move his right hand a bit, he eyes were fine and he could hear us perfectly. We already had him on a feeding tube as we knew that he may need help to eat during the chemo process. This was a blessing as we were able to keep him well nourished during this entire process. Eventually, they had to give him a tracheostomy as he was unable to swallow and the salvia would pool on his vocal cords, which were also paralyzed.
We needed to act, we needed to stop the injury from progressing. We were told it could take his life. We were petrified. We were seconds away from his death. It had already taken his speech and his movement and all that it needed to take was his heart beat.
We were also told that the only real options for us were high dose steroids to bring down the inflammation and hyperbaric oxygen therapy (HBOT). We started HBOT and high-dose steroids at a local hospital in Memphis. Santiago kept getting worse. We felt useless and unable to do anything -- probably one of the worst feelings a father and mother can have. After a couple of sessions, the HBOT facility and St. Jude did not feel comfortable continuing to treat Santiago as they did not have the resources to ensure his safety. Not to mention how terrified he was to go in this chamber. Finally, they decided to fly us to Philadelphia (CHOP) for HBOT in a safer environment. We arrived to Philadelphia with the hopes to get back our son healthy again and had to put cancer treatment on the back-burner. We had an immediate threat to Santiago and we needed to do everything possible. The next 8 weeks were difficult as we endured 40 sessions of HBOT, which involved putting Santiago into a submarine type chamber where it would create sub-atmospheric pressure to infuse his brain with the oxygen it needed to recover. Santiago seemed to start to show some improvement. However, the high dose steroids were taking their toll on Santiago. His face blew up like a balloon to a point where only a loving parent could recognize him. Why so much suffering for such an innocent child? Life and this world made no sense to us. I did not want to see my son die in a hospital far from home far from his family and friends.
Darkness was everywhere. We spent days and night with him at the ICU in Philadelphia. The treatment started to show at least on the scans that the swelling in his brain stem was under control. They told us that we had to make a decision whether to start chemo again or take him home. We wanted our son to live and we decided to go back to Memphis to finalize his chemo treatments. We felt St. Jude had the experience to control any potential side effects he may have during the chemo. We arrived to the ICU and once again things took a turn for the worse. As we prepared for another 3-4 rounds of chemo, we settled into the ICU as he needed breathing assistance from a vent to live. Just as we thought things could not get worse, the injury to his brain stem returned with a vengeance. The swelling in his brain caused his entire body to freeze up and his jaw to seal shut. Everyday, I would lock myself in the bathroom and cry my heart out. I needed to release the tension so I could be there for him. It was too much for anyone to handle. We started to feel like we were going to lose him.
The doctors then approached us and told us that chemo was off the table as he would probably not survive it. This meant that we would not be able to finish first line treatment and hence putting him at higher risk of death from the cancer. We were also told that we needed to try a relatively new treatment to control the swelling as it would also likely take him- the treatment was called Avastin. It was a drug that had been deadly in various patients but we were out of options. We gave them the ok to give him the drug. We feared for his life but it was what we had to do. After the initial infusions of the drug, it appeared that it was working. The swelling in his brain went down significantly and Santiago did not suffer any side effect from the treatment. It saved his life. We were given renewed hope that he was going to survive. We started on the slow road to recovery from the new damage caused by the swelling.
It was touch and go everyday as we did not know what was going to happen. As he started to recover and the drug seemed to continue to work, we started to feel like things were a bit more stable. I went to my room at the nearby Ronald McDonald house to try to sleep. My wife stayed with Santiago on the couch of an adjacent room to Santiago’s ICU room.
During our time in the ICU, we saw many kids leave this world. It was like a war zone where every couple of days we would hear the dreaded words “CODE BLUE” which meant there was a life threatening event in one of the rooms. Soon after, we would see a stretcher taken out with another kid losing their life to cancer or the treatments designed to try to cure them. We would hear screams from the parents as their children passed. During our 8 month stay at the ICU at St. Jude, every room had a child pass. It was like living a nightmare within a nightmare. The only room that was spared a death during our stay was Santiago’s room.
It was December and we were seeing Santiago slowly recover from the second swelling event. I went to the room to sleep, got up to take a shower at the Ronald McDonald room where I had my things. I was in the shower, when I got a call from my wife. I rushed to the phone, I answered and I heard my wife scream “CODE BLUE, CODE BLUE”. I knew what that meant. It meant Santiago was under a life threatening event.
My wife was giving our son a bath at 6:45am. He was on his side and she looked up at the monitor to see his heart rate go from 80 to 50 to 30 beats per minute, then the nurse pushed her out of the way and started CPR on him. My wife looked at the monitor again, heart rate was at zero. The line was flat. She rushed to the phone, called me and she screamed “Code Blue, Code Blue” in a loud trembling voice. A wave of staff rushed in as a change of shift was happening at the same time. A board was put under his naked body and my wife was screaming, “PLEASE SAVE HIM” as they administered CPR. My wife started turning around in circles uncontrollably. They were able make his heart start pumping again. Ronald McDonald house was a block away. I ran as fast as I could. I triggered all the alarms to try to get to my son. When I arrived, his heart was beating again but I was so white that my wife did not even recognize me. She had to look twice.
It is not a day I want to relive again, but it is important that the world know about this. I say this with the hope that we can prevent this from ever happening to Santiago or any of the potentially thousands of kids faced with this terrible disease.
This day will, unfortunately, be with me forever. It is a moment that I vow to do everything in my power to never have to experience again while I am here. To show you the beauty of Santiago’s soul, that very same day, Ms. Consuela and Ms. Rivera arrived. And these two beautiful angels spent time with Santiago out of bed and did activities that made him smile as if nothing had happened.
Again, our lives were forever changed.
We slowly recovered from the event and it turns out that Santiago did not suffer any negative effects from the cardiac arrest. We had the privilege to continue to fight next to our son. Finally, paralysis in his face started to go away and a smile reappeared -- a smile that can only be explained as pure joy to a parent. It was an indication from the depth of my son’s being that he was ok and wanted to be in this world. It is, to this day, the fuel that keeps us going and happy to fight for our son.
Again, there was little time for sorrow. At this point as our son needed us more than ever. We cleared the tears put on the battle gear and started again.
TRAPPED IN HIS BODY
The next step was to find a place to rehabilitate Santiago in the best way possible. He was now ventilator dependent. Until we were able to find a portable ventilator and arrange for a transfer to a specialized rehabilitation facility, Santiago would need to remain in the ICU at St. Jude, unable to even leave the room without expert staff around him. As we were not in our home state, no company would supply Santiago with a ventilator. We needed to start rehabilitation as soon as possible to help Santiago recover. Time, again, was of the essence and we could not find a way with the insurance and the equipment providers to give him a portable ventilator and get him to the right rehabilitation center. Finally, I had to fly to New Jersey to buy and personally pick-up a portable ventilator for our son to leave the ICU.
There were three locations in the US that were equipped to take Santiago as an in-patient for intense rehabilitation. We chose Shirley Ryan located in Chicago. We heard they were the best and were inaugurating a brand new facility. We would spend the next three months in Chicago where it was time to regain Santiago’s quality of life. No more ICU room with dozens of beeping machines and cables attached to his body. Time to engage with the world again. This is what we did.
I went ahead of my wife and Santiago to prepare for their arrival to Chicago.
As my son was being discharged back at St. Jude, the psychologist walked in and told my wife, “I am here to say goodbye, but I need you to sit down and talk to you.” She mentioned a typical phrase, “I have good news and I have bad news.” My wife told her sincerely, “I really do not want to hear any more. We are leaving this nightmare, please let us be.” She said no, “You have to sit down and hear me out.” She went on to say, “Your son scored better than most kids in the hospital. He is extremely smart. He answered 95-97% accurately with his eyes, better than most kids in the hospital.” My wife was surprised to hear that. Then the therapist continued, “Here is the bad news, he is trapped in his body.” She kept talking but all my wife could remember or think about were the words, “he is trapped in his body”.
On one side, we are already knew deep in our hearts and minds that he was still there mentally with us. However, it was not pleasant to hear that your son is feeling trapped in his own body not being able to move or express himself other than through his eyes.
With this news, we needed to take every step to get his movement and voice back.
Within hours of arriving to the new facility in Chicago and being on his new portable ventilator, the Doctors allowed us to roam free the wide hallways of the new facility. No requirements to be locked up in an ICU room days and nights. I felt like shouting the words of the iconic character William Wallace from Braveheart, “FREEEEDOOOM.” With the portable ventilator rolling behind us, we took to the hallways. The hallways quickly become the building and within a week, we were on the streets of Chicago with the ventilator strapped to his chair.
Transitioning to a life in an ICU to one of more freedom was incredible but it had its challenges. As Santiago could not breathe on his own or cough on his own, we need to suction his lungs through his tracheostomy tube as swiftly as we once put a straw in a juice box for him. We needed to have a constant monitor on his Oxygen saturation levels to ensure he was getting sufficient oxygen. When his levels went below a certain number, the machine would beep and we would need to get into action by attaching a suction device to his trachea and “pulling out” any blocking secretions to clear his airway. It was (and still is to this day) like a mini-life saving procedure we needed to do every 10 minutes. We took the training courses and quickly went out on our own to the surrounding attractions in Chicago. We visited parks, museums, aquariums, zoos, toy stores, and anything that would engage our son with this world. This was on top of a full day of scheduled rehabilitation sessions.
The time at Shirley Ryan was not without its dangerous moments. One time when I was traveling and Ms. Consuelo was visiting, we saw Santiago almost lose his life to too much secretions entering into his lungs when my wife performed a routine trach change and ended up with Santiago in the ICU. My wife had to fight and scream in the hallways of a new hospital to get help to keep Santiago’s blood pressure up. It got so bad that my wife dropped to her knees and she started screaming, “God please don’t take him!”
We also started to see his heart rate drop to dangerous levels as he struggled to maintain healthy body temperatures. We endured and survived them all.
As we started to come to the end of the three months and, while subtle, we were starting to see some results. We also started to become well aware of the impact on Santiago’s quality of life to have him on a ventilator 24/7. We needed to act again to find a way to have him breathe on his own. We started to research options. We looked at everything. We even attended conferences on Stem Cell research. We spoke to top neurologists and Stem Cell experts. We looked at everything that could help his brain recover from the traumatic injury caused by the harsh treatments. It seemed like the dangers of these cutting edge treatments outweighed the known benefits. I lived and breathed (and still do) ways to find ways to improve the quality of life for our son.
Finally, after some research and after talking to the local doctors in Chicago, we decided to contact Dr. Raymond Onders. He developed a special device that, once implanted, could help Santiago breathe without the need of a ventilator. It was called the Superman device as it was first used on Christopher Reeve after his spinal cord injury. After weeks of research, conversations with doctors and discussions with the insurance company, we decided we wanted to give Santiago the freedom of breathing without a ventilator and implant the breathing device called a diaphragmic pacer. The surgery would be performed in Cleveland, Ohio and would require 5 small incisions in his chest. Dr. Onders would perform the surgery himself.
Santiago would be one of the few children in the world to ever have this device. We were excited to be able to provide this freedom to Santiago and our family. As we were scheduling our medical flight to Cleveland, we got a call from St. Jude. On the other side of the phone was Santiago’s main oncologist. He gave us the bad news that with the implantation of this new device, Santiago would be at risk during his necessary MRI cancer screenings. Despite evidence showing that the device would be MRI compatible, St. Jude’s risk department would not allow Santiago to get screened. We knew how important the cancer screens were going forward given his risk for recurrence. Again, we were devastated. As my wife cried in my arms after the news, we once again wiped off our tears knowing that there was little time for sorrow as our son needed us. We started to call around MRI centers around the US looking for a facility that would agree to perform the necessary screenings. We also did significant research on the cables to ensure they would not be a risk to Santiago during the screening test. After being convinced that they were safe, our goal was to ensure someone would do the necessary MRIs. We were told that another child with the same device was being screened in Orlando, Florida. We immediately called and it appeared that they were ok with screening him with the cables.
Based on this information, we decided to take the risk for our son and move forward with the procedure to implant the device. We traveled on a medical flight from Chicago to Cleveland, which costs in excess of $300k USD. Fortunately, the insurance company had approved the payment of the procedure to install the device as well as the medical transport to and from the facility. Further, Angel Flight agreed to process the travel requests without a guarantee of payment.
We were off to Cleveland! The surgery was complicated but did not take long given the experienced hands of Dr. Onders. Within a couple of hours of recovery, it was time to try out the new device. As your diaphragm loses it capacity to breathe very quickly after being on a ventilator, we knew it would take some time for Santiago to get used to breathing with his own muscles.
The first day after surgery he breathed 5 minutes on his own with the device. After about 3 weeks, he was off the vent all day. We had achieved an important milestone for our Santiago.
After Cleveland we returned back home to Miami into the welcoming arms of the community. Within weeks, we visited his old school and were greeted with a welcome back ceremony. It was truly special. At the same, it was very difficult to go back to the school where he used run, jump, play and learn with the other kids. He was now wheelchair-bound for the time being with an unknown future of challenges no child or family should face.
After spending about 3 months in Miami, Santiago was approved to go back to school with a nurse by his side. We knew this would add tremendously to his quality of life. In November of 2017, we went for our first MRI after having the pacer installed. We were not sure if they were going to allow it but ultimately they allowed for the screening.
Unfortunately, the screening did not have good news. Santiago had relapsed with two new lesions in his brain. We had read and had been told that relapsed Medulloblastoma could not be cured. Was this it? Was Santiago terminal? The local doctor in Orlando suggested hospice where basically a team helps you die in dignified way. Both my wife and I cried uncontrollably. Again, little time for sorrow as our son was still with us and needed us to fight for him. We kindly refused the offer to put him on hospice and started researching new trials that could help keep our son alive.
To our dismay, we called all the promising trials and we kept getting the same response. “I am so sorry, your son does not qualify due to his brain stem injury.” The same medical system that led him down this path with life threatening treatments, turned their backs on us. We could not believe that no one would treat Santiago. Did they not know our son’s life matters? That he can smile? He can cry? He feels pride when he gives his Grandma a drawing he helps paint and he wants to live just like the rest of us! It was so unfair. Until we finally spoke to a man named Dr. Johnson. He had opened an immune therapy trial in Augusta, Georgia (which is coincidentally where I was born). Santiago did not qualify, but out of the kindness of his heart, he agreed to request a special exception for Santiago. The FDA ultimately approved. Santiago was the first patient ever on this new immunotherapy drug to receive the treatment through a “feeding tube,” which has now paved the way for other kids and adults on feeding tubes to receive the same treatment.
After starting treatment, Santiago’s tumors appeared to not be growing and had become stable. Again, our “hope tank” was getting a much needed refill. Things were back on track and we started to focus on regaining movement again. At the same time, we took to the streets of Orlando with Santiago so he could he enjoy the very life cancer was trying to take. We got season passes to all the parks and started enjoy life with our son.
The next MRI in April showed good news with the tumors, but as we were leaving the doctor’s office to go home, the doctor called us back in. He told us that the MRI showed a strong enhancement in his spine. They did not know what it was, but Santiago would need to be admitted. This was right before his birthday and in the middle of Master’s week where every hotel was booked. They immediately scheduled a team to do a biopsy of the fluid near his spine. They also had us meet with a throat surgeon as the enhancement of the spine was close to his trachea. The throat surgeon came in after looking at the MRI to discuss what he thought. His first words were, the cancer has spread to his throat. We were in shock as we were just told that tumors were in check. The surgeon was convinced it was cancer. Again, tears flowed. I was more skeptical as by this point as I knew that Medulloblastoma did not leave the CNS often. But then again, I was not a specialist. Fortunately, the biopsy came back negative. But he did have a life-threatening infection resulting from a hole in his throat caused by his tracheal tube cuff. We needed to get him on antibiotics right away, given that it appeared the infection was spreading to his brain, or we would lose him. Further, we needed to do an emergency surgery to close the hole in his trachea, which was the source of the infection.
After two weeks in the ICU in Augusta Georgia, we were dismissed with a sewn-up trachea and a treated infection. During this entire time, we had to stop treatment to allow his infection to heal.
THE WAY TO THE CURE
The next MRI showed new enhancements, which we decided to treat via radio surgery. We knew that we were putting out fires but we had nowhere else to turn. Then things seemed to stabilize with the tumors not growing through the end of February 2019. In his last MRI, however, the tumors started to grow again and we knew we needed to find a different way to treat these small yet deadly tumors. We noticed that a small 1 cm tumor was growing on frontal lobe right next to his cranium. We knew that if we could actually get a meaningful piece of the tumor, we may have a chance to tailor a cure to him. We spoke to a very gifted neurosurgeon in Orlando and he told us that he could operate on Santiago to get the tumor out.
We were presented with the option of just doing a quick and painless radio surgery buying some more time or trying to get the tumor out and go for cure. We were convinced. We were going for the cure!
We immediately scheduled the surgery, contacted some key cancer researchers and formulated a plan to cure Santiago. As well-orchestrated as a heist seen in one of the Ocean or Mission Impossible movies, there would be little room for error on the day of surgery. We would need to have a specialized team ready to collect Santiago’s live tumor, send part of it via a direct flight to John Hopkin’s where his live tumor would be injected into mice to grow for future testing, flash freeze other samples for both full genome RNA and DNA sequencing, send another block of tumor to University of Texas for specialized target testing called Morpho Proteomics and finally keep two extra samples for future use.
We lined everything up and it then came the morning of the surgery. As I woke up in a nearby hotel room to prepare for Santiago’s surgery, I get a call from my wife where she was hysterically crying. I immediately said what happened? Is Santiago ok? She mentioned that she had a meeting with surgeon early in the morning to discuss the plan and the results of the MRI done the night before necessary to pin point the exact location of the tumor. He gave my wife the news that all the tumors had tripled in size implying that Santiago only had weeks to live. Further, that it probably did not make sense to put him through the surgery given this new information. Again, we were beyond devastated. I ran to the hospital and we scheduled a meeting to discuss next steps. It seemed like we were going to have to miss the chance to take out the tumor and have to start Santiago on a new chemo to try to control the growth.
It was another blow to us and it left us again with few places to turn. After going downstairs to the hospital to pick up the chemo medicine on this new revised plan, we ware called into a meeting with the on-call oncologist. It turns out that the way they did the MRI for the surgery was NOT the same procedure as done with previous MRIs with the intent to measure the tumors. In other words, the initial reading of the MRI by the surgeon was not correct and the tumors had not grown. Again, we were in shock. At least this time, the news was good! There was still time to have the surgery! Feeling frustrated, we thought of what would be best for Santiago and proceeded with the surgery.
Today, I am happy to say that Santiago’s actual tumor is being grown in mice, the tissue samples are being sequenced fully (both RNA and DNA), tissue samples were sent to UT where already we have information that could help with the treatment of Santiago’s actual tumor markers, and we are in conversations with a leader in neoantigen vaccines to create perhaps a curative vaccine based on Santiago’s actual tumors’ DNA and RNA. Further, other samples could be used to create a specific CarT therapy based on Santiago’s unique markers. The possibility are endless with this new information.
If we are able to successfully cure Santiago, this will change the nature of pediatric oncology globally, as a safer more customized approach will at least be an option for thousands of parents of children that are diagnosed with cancer each year.
Given that this research and approach is on the cutting edge of cancer treatment even for adults, all the costs associated with the development are not covered. We thank you for your help to save Santiago. Our hope that this will not only help a little boy who so desperately deserves a new lease on life, but will change the nature of pediatric cancer. We hope this monumental first step will lead the way to safer customized treatments and vanquish today’s highly toxic front line therapies to a thing of the past. Imagine being able to treat cancer as they treat a bacterial infection with antibiotics. It wasn’t always this way. It took a stroke of chance and a mind to take action on this chance.
We thank you for allowing us to take this chance.
Love, Claudia and Richard