Tristans leukemia journey

I was 5 when On Oct 24th my life changed 4ever, I was diagnosed with high risk bcell acute lymphoblastic leukemia. we found out about my cancer 2 weeks after my baby brother had open heart surgery. he was 3 yr old ((10/11/18)) I was five at the time. before being diagnosed I was never since not even a cold. I was born happy and healthy 9lbs 10oz 22.5 in long 14 in head and chest. within 30 days of

being diagnosed they had me in remission. we went home after 10 days of being in the hospital getting intense chemo to put me into remmision. mommy was told in the beginning that if the cancer returned within the 1st 5yrs there isn't much they can do to help since they're so aggressive with it from the start. DID U KNOW EVERY 3 MIN A CHILD IS DIAGNOSED WITH CANCER YET THEY CAN CHILDHOOD CAMCER RARE??!!! DID YOU KNOW THAT 1 IN EVERY 3 OF THOSE KIDS WILL DIE FROM THAT CANCER NO MATTER WHAT THEY DO OR HOW HARD THEY FIGHT IT. SO recap diagnosed 10/24/18 ((85-95% chances of surging)) I was in remission by Thanksgiving. I didn't like having to spend Halloween in the hosp but I made the best of it. so after we got to go home on the 11th day around 11/6-7/18 ish I was only home for 24hrs when my leg started burning and hurting so bad I couldn't take it. there was only this tiny lil red dot. we thought I got bit by a spider. yup back in the hosp for the remaining 18 or so days. total of atlwast 30. this tiny red mark ended up being mrsa and ate a hole in my thigh the size of my fist. I had to learn to walk again and was in so much pain. so now I'm coming to the children's hosp 3xs a week for surgery to drain my leg , every other week for a spinal tap surgery and 2xs a week for chemo. in remission 16 months ((so we thought)) found out I relapsed on March 2020 I was back in the children's hosp 3/12/20 omyk to find out that I was never in remission at all. the cancer had completly evaded chemo and hid out. mutated into a stronger more difficult cancer to beat and get rid of. my chances of surviving have now dropped to 40% chance and this is only IFFFFFF we can get into remission and get a transplant. after 30 days checked again no remission. I'm down to one last choice one thing we can do before there is no hope left and that's that. my odds are now 20% chance of surviving and it's June 1. I start my belina backpack. immunotherapy and after 28 of 24/7 belina im in remission. one more 28 days round of belina and it's now July 10th I'm going into the hosp to start the transplant process. still my odds are only 20% chance of beating this. I now will never have kids of my own do to the radiation and chemo. I'll have life long anxiety and fear of certain things and places........ TO B CONTINUED......


((UPDATE... I'm not sure if everyone even knows yet on here or not I'm sure most do.. but I'm updating the info either way. Tristan wanted me to keep his group and page going so that's what I'm doing. he wanted me to keep his story going and keep sharing it so everyone knows him his journey and his life. so that's what I'm doing. ))))


CONTINUED FROM ABOVE JULY 10 2020
I had my transplant after 3 whole days of whole body radiation on July 17th 2020 I finally left the hosp post transplant ... after 5 weeks in the hosp. mommy was with me the whole way like usual... we went home and man was it nice to be home. I love being home. I beat 2 colds by myself with no antibiotics, no hospitals, no doctors , and no fevers. life was finally getting back to normal. we thought everything was good. we finally had a little bit of hope. let me tell u a little bit about hope. it can be a very dangerous thing. hope can crush u. hope can kill u inside if you let it. I'm not saying don't have hope cuz to be honest what do we have if we don't have hope??? on oct 24th we were sitting around playing video games. well mommy daddy and bally were anyways. I was laying in my mommy's lap. sissy was playing on the floor and jaxson was in school. mommy and daddy sitting next to each other on the couch headphones on and playing cod with Bally my mommy best friend, my wife who lives in Trinidad. mommy gets a phone call after the phone call which made her abruptly stop playing which was very odd for her to do. she never just stopped playing like that. not the way she did. after the phone call she was hysterical. she wouldn't tell me anything at that point she said that her grandpa was sick and not doing well. I knew something was wrong but I didn't know it was the bomb � they dropped a day or two later. we went to the doc the next day. I hung out with my fav nurse Micheal while mommy and daddy talked to the docs. which was diff they never did that. I was always in the room when the docs came in. again I knew something wasn't right. that day they sat me down and told me what was going on. let me say this from the very first day of being diagnosed and our lives being flipped upside down. mommy fold me that she would always be honest with me always tell me the truth no matter what and she did. In the end it made us that much closer. made our bond that much stronger. I knew who I could count on who loved me and who I wanted to spend my remaining days with. yeha u heard me right. I was told a couple days later that I wasn't going to make it. my life was going to be stolen from me at the young age of 7. I wouldn't be grow up and be a firefighter like I wanted to be when I grew up. I wouldn't get to have any more bdays Christmas or holidays in general. I wouldn't have a first gf or get to graduate or get married. I wouldn't have the joys of having grandkids either. I was going to die at 7 yrs old. my worst and biggest fear I was now living it hurt but I decided to try and make the best of it. squeeze in as much stuff as I possibly could. we had so much planned for the weeks to come. I got to have one more Christmas with snow santa and mrs clause came to the house specially for me to see me and take pics. we went to the zoo 2xs. I got my first kiss and went to chuck e cheese 2xs. I spent as much time with my mommy daddy mema brother and sister jaxson. we had plans to go to dolly wood and to go to orpryland but sadly I wouldn't made it to that. on Nov 12th I was rushed to the hospital I couldn't breathe. scared me mommy daddy mema half to death. they thought they would lose me that night but I pulled thru. spiderman came and seen me at home that night. sadly I passed away surrounded by the ones I loved most in my life. mommy daddy mema mama Grammy and my awesome nurse Kendra. I passed away on Nov 14th at 145 pm in my mommys arms at home in mommy and daddy bed. you'll be forever loved and missed my son. peep childhood cancer is not rare and it's not fair. we need to find a cure. no kids deserves to go thru this and no parent deserve to watch their child suffer. as mother's we fix things. we make them better and with this we cant. it's heart breaking to be honest and it does. it changes ur outlook on life. it changes u mentally physically emotionally it changes u in every way it possibly can. this isn't the end but il write more later on.