“Runway to Hope was the safety net that we needed when we were in the middle of all the chaos that was happening in the beginning of Michael’s journey with beating DIPG”- Idiana, Michael’s mom
Michael Santana’s mom and dad were looking forward to enjoying their sons’ first cruise. This was a “Birthday Cruise” for the family and they were set to cruise to the Bahamas beginning Thursday, November 29th. On Friday morning, Michael began to complain of a terrible headache. Michael’s parents took him to the ship’s doctor, who referred him to the hospital ashore for further studies. At the hospital, they found a mass in Michael’s brain and decided he needed an MRI to get a better look. Because of the delicate situation, Michael was not cleared to go back on the boat or fly commercially back to the United States. Michael was brought back to Florida on a Med-Evac Air Ambulance, which cost the family an out of pocket expense of approximately $12,000. On Saturday December 1st, Michael arrived at Nemours Children’s Hospital and just a few hours later that day, Michael and his family were given the horrible news that he was being diagnosed with an inoperable malignant brain tumor. The type of brain tumor that Michael was diagnosed with is called diffuse intrinsic pontine glioma, or DIPG. Michael’s brain tumor is located in his brain stem, so a biopsy could have been fatal. He completed 30 days of radiotherapy quickly after his diagnosis. Radiation kills some of the cancer cells, shrinking the tumor and reducing pressure on the brainstem. This can greatly improve how the child feels and functions for a few months, and 75-85% of patients show improvement in symptoms after radiation therapy. Because even carefully aimed radiation therapy causes some damage to the healthy brain tissue surrounding the tumor, there is a limit to how much radiation therapy can be given to each patient. Beginning in March, Michael started to have headaches, so his doctors put him on an oral form of chemotherapy that he takes for five days, every 28 days. He is now on month three of chemotherapy. Michael has also been on steroids since December, causing him to gain double his weight in six months. The next steps for Michael will be an MRI in three months and his family is praying that the scans will show that the tumor will continue to shrink, as it has done so far.
Michael’s diagnosis has been very hard on the whole family. Michael’s initial incident happened on Michael’s mom’s birthday. Birthdays are a big deal in this family, and her birthday will never be the same. Michael’s mom wakes up every morning to go see if Michael is still here with them. Even though the doctors have given the family a timeline for Michael and they are halfway there, they celebrate each day as a victory and like it is the last one! Michael’s family does their best to keep daily life “as normal as they can” and it is what keeps them sane and fortified in God’s strength to keep them going. Because of Michael’s diagnosis, his mom Idiana was forced to stay home and go to a part-time status at work. Runway to Hope was honored to be able to help the family with electric, water, and their mortgage payments during this time, through our family assistance program.
Michael is a strong warrior who has kept high spirits despite going through this tough journey. He has been very understanding of his new limitations, such as having to experience his schooling at home and through the Hospital Homebound program. Michael loves video games and his favorite game right now is Fortnight, though he also loves Mario and Minecraft, as well. Even though cancer has changed Michael’s life in a drastic way, he has big goals. One of the goals is to be successful in life by becoming either a chef, an artist, or a math teacher. Michael also loves reading and drawing.
DIPG, or diffuse intrinsic pontine glioma, is a type of brain cancer that is found in the pons, a part of the brainstem of the brain. The name, diffuse intrinsic pontine glioma, describes not only how the tumor grows and where it is found, but also what kinds of cells give rise to the tumor. Diffuse means that the tumor is not well contained. The cancer cells grow into other tissue and mixes with other healthy cells. This makes DIPG very hard to treat. Pontine describes the location of the tumor. It is found in a part of the brainstem called the pons, responsible for a number of important bodily functions, like breathing, sleeping, bladder control, and balance. Because these functions are vital to survival, the pressure from the growing tumor is very dangerous. Glioma is a general term for tumors originating from glial cells, which are found throughout the brain. They make up the white matter of the brain that surrounds and supports the neurons, cells that carry messages in the brain. DIPG makes up 10 to 15% of brain tumors in children, with over 100 new diagnoses happening every year.
Runway Hope was honored to have Michael walk for the first time on our runway at our Spring Soiree just a few weeks ago. Our Spring Soiree gave Michael and his family a time to enjoy themselves outside of the hospital and a place to relax and have fun. Michael’s mom shared that they “felt so supported by Runway to Hope in words that cannot be put into place. We can’t explain the magnitude of gratitude that we have for this organization”. Runway to Hope’s Family Assistance Program, the same program that helped ease the burden on Michael’s family, relies on donations such as yours to continue to give back.
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