My son Rayaan, was diagnosed with an aggressive form of brain cancer on June 6th, 2021. DIPG is a rare brain tumor at the brain stem. In a span of 24 hours, he has turned completely bedridden.
When we have each other, we have everything! For us, "everything" is a small, beautiful family for my husband Omar and and I and our two boys, Rayaan and Saad. Little did we know that the peace and happiness of our small family residing in Washington DC would be challenged when Rayaan was diagnosed with DIPG (an aggressive form of brain cancer) on June 6th, 2021.
DIPG is an extremely rare brain tumor at the brain stem; it affects just 200 kids annually in the USA (1 in 100,000 kids). Because it's so rare, there is no funding available for research and thereby, only experimental treatment options. The tumor is jelly-like, making it impossible to remove it surgically. After the diagnosis, Rayaan has been through radiation as well as three brain surgeries involving an experimental trial out of New York. Unfortunately, the trial had an extremely adverse reaction on him. He went from being a boy with a cute smile who was able to walk, talk, and eat, to being completely bedridden - being able to only move his eyes - in a matter of 24 hours. What followed was intensely scary weeks in ICU, an extremely challenging flight back to DC, and a months-long hospital stay in Presbyterian Morgan Stanley Children's Hospital. After about 3 months, he came home with severe loss of functions. To give you a sense of the situation, he is now a five-year-old boy trapped in a six-month-old body. Since then Rayaan has worked really hard to regain some of his functions, proving his doctors wrong. He is still on a feeding tube, cannot walk unassisted, and can speak very little. He has a very long way to go just to get back to where he was in May 2021. And that's without addressing the tumor.
Before the diagnosis, Rayaan was like any other five-year-old - full of energy, constantly chattering, always on his scooter, asking questions about everything he came across. He loves nature, animals, birds, and even those tiny Rollie Pollies. He is a neat freak, meticulous about everything he does - cleaning and organizing his books, toys, clothes, even the soap and shampoo bottles in the bathroom - from the tallest to the shortest. He loves Pokémon, Legos, Avengers (Thor being his favorite), Arts and Craft, and his cars. His favorite colors are blue and gold. He loves growing veggies in his garden with his dad. His favorites are zucchini, cucumbers, corn, and especially tomatoes. Whenever he came home from anywhere, he would just venture into the backyard, plucking a handful of tomatoes, washing them, and eating them with a big grin on his face.
Now, of course, he is not able to do any of this.
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Venmo- @Sabrina-Rahman-14 (Notes- Rayaan's Surgery)
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