Damian and His Battle with relapsed Leukemia
Damian is an 9 year old boy who unfortunately has to go through a terrible thing that is Cancer twice. Below is his story and his diagnosis that his mom sent to me
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Hi Shaurya!!
First of all, thank you so much once again for visiting and for the wonderful gift! Damian has loved building the set and it brought him so much joy during his last scheduled admission!! He has already finished the set and is excitedly deciding where its going to be displayed so that everyone could see it!
Damians story is so similar to thousands others I've heard over the years, its heartbreaking how many kids have to experience the trials of cancer before they get a chance to truly experience life. Damian was diagnosed with Leukemia when he was just 5 years old. On Halloween night 2021, he was so sick that he couldn't even make it down the street to Trick or Treat, so we raced to the emergency room and were faced with the truth that would change everything. Over the next four years, Damian would take on treatment head-on, spending more time in the hospital than in school. He would undergo countless invasive procedures, 3 bone marrow biopsies, 4 surgeries, and hundreds of hours of chemotherapy. Sadly, his cancer came back a year and a half ago, which now requires even more aggressive treatment. Just this past year, Damian spent over 100 days inpatient, not counting multiple weekly clinic visits. The time commitment meant that I had to quit my job and dedicate all efforts towards accompanying Damian to clinic appointments and living in the hospital during lengthy inpatient stays.
Recently, on top of Damian's cancer treatment, his diagnosed hydronephrosis (chronically enlarged kidney) has been adding an extra layer of complications to his treatment. As his body struggles with all the chemotherapy, he is experiencing episodes of acute kidney pain due to all the extra fluids his renal system now has to process. He will need surgery to fix the obstruction and insert a stent, but since he is severely immunocompromised, this will have to be delayed until spring, when he completes the most aggressive treatment cycle. In the meantime, we just have to manage the kidney pain alongside other chemo symptoms, and hope for the best.
Throughout all of this, Lego has been an essential part of Damian's journey. The play sets allow him to build and create without overexerting himself, while still maintaining a sense of normalcy and helping him feel like he can still do all the things he used to enjoy. He loves Lego so much that for his sixth birthday we went to Legoland in New York and he rode the dragon roller coaster no less than 6 times - he said it was his bestest birthday ever!
Even with the constant uncertainty, Damian continues to bring color and laughter into our lives. He dreams of becoming an illustrator, and every day we fight to make sure he has a future bright enough to match his imagination.
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After meeting with Damian, I realized he has the same passion of building lego set same as I do, and I have decided to gift him another Lego set of his choice,​​​
