Deon Strong - Beating Leukemia
January 20, 2018
You were put on this Earth to teach mommy so many lessons. I told myself when we got out of the hospital I wouldn’t be “one of those” moms who freak out and think the worst every time any little thing happens. Lesson learned, I am that Mom. I overthink, get scared, and cry before I even know the diagnosis. We are admitted for the night but it’s nothing like I thought it was. Nothing more greens won’t help.
Bug. Thank you. You made me cry and laugh and smile so big because my heart is full of love for you. I look at you and know I am blessed to have you as my son. I love you.
January 30, 2018
Well I guess what I thought was, wasn’t and back to CHLA we go. Who would have ever thought that a side effect of all the blood transfusions could be gallbladder issues? Wheels up.
February 1, 2018
Deon had a procedure done called an ERCP. For this procedure he was sedated and had a long tube put all the way through to his gallbladder. The reason for this procedure was to remove a 1mm stone from his bile duct. This was just the start of something more significant.
February 5, 2018
Goodbye central line and gallbladder. This surgery should’ve happened days ago. We should’ve been heading back to Vegas tomorrow. But we had to wait for the other parent to consent to necessary medical procedures. At least it can finally happen so I guess I should be grateful. Keep lil man in your thoughts and prayers for a quick and speedy recovery.
I will always be here when you wake up. When you’re in pain, I will do what I can to take it away. You are my ‘son’shine. My everything. My bug.
February 11, 2018
Today we begin our journey back home.
Our journey to normal.
We just have to get there. With looming medical bills, no real place to call home, and childcare that needs to be exceptional, we know this next step won’t be easy.
Though, I know, if Deon can get through this, we can get through ANYTHING.
Preliminary results are in... My Deon, you are a warrior. Diagnosed a year ago. More inpatient than outpatient living. Chemotherapy. Radiation. 2 bone marrow transplants.
But you’re doing it. Kicking cancers butt like there was no reason it should’ve ever even tried to take your life. Never give up my bug. I love you!
January 8, 2018
Results are in:
MRD is clear!! Thanking Jesus for all He does for my baby. My bug is smiling more, eating more, and just doing better! Speech and neurology were contacted to see about his speech. I’m so thankful!!!
Day 60 Post 2nd Transplant...115 Days in CHLA...Never give up HOPE.
November 18, 2017
Friday the 17th we were at outpatient appointments from 0930 until 1630. Deon needed a platelet transfusion which total took 2 hrs.
The attending Dr, Dr Kapoor who absolutely adores Deon, seemed different when she talked about him. I could tell she was proud of how well he was doing but something made her sad. She told me today in the 35 years of her being in BMT and Oncology, she’s never seen someone have the effects like Deon. An enigma she called him. No one can figure out why he won’t/can’t speak. Nothing showed on his scans and no one believes he is choosing this. When he hears music, my voice, sounds, he listens. They were thinking it was audiology. But that shows it isn’t. Deon is different and while I’ve been told on numerous occasions that I don’t care about him or that it was my “fault” he is the way he is, I go to bed with tears every night. I watch movies daily of him talking. I miss my Deon and while I am grateful beyond belief that he is still here with me, my bug’s spirit is gone and I don’t know if or when it will ever come back.
November 30, 2017
I’ll update on numbers and going home date tomorrow...
For now enjoy these pics of Deon visiting #LAFD35 yesterday. It was the craziest thing! We were walking by and some of the guys said hello. So I stopped and Deon walked up to one of them, staring at him up and down. Then he walked towards the engine in the bay. One of the guys chuckled and said it’s like he knows you...I looked to see who he had been staring at. It was one of the 4 firefighters that had come to visit him 4 months ago!!! Deon looked right at home at the station. Some things, no matter how different they seem, still feel just like before...
December 1, 2017
We’ve made it a week! Today we went in expecting Deon to have to have a platelet transfusion, but his platelets are holding steady and at 31!! Yay!
His hemoglobin was a little low nearing the dreaded 8.0 mark but not enough for a transfusion of that either.
His ANC is 4000!!!
Counts are amazing and little Deon and I got the green light to come home. Sissy will be making her way over, fingers crossed, 13 December! That my friends, marks 1 full year since diagnosis. What a wonderful day to head home if ya ask me!!
Thank you to everyone who could come to visit us over this period of time. To those that said you would or should have and never did, well, I’m sorry he wasn’t important enough to you.
Thank you also to every single gift Deon ever got while in. I either have a picture or video and will be putting that together soon.
Tomorrow my mom, sister, and Ms Teri will be on the hunt for a house for me and the boys. Please pray they find us our home.
Love you all and I can’t thank you enough for being on this journey with us!
December 13, 2017
It’s been 1 year since diagnosed.
Today. We leave LA and head home.
December 28, 2017
Day 105 since transplant. Bone marrow aspirations are done to make sure he’s still in “remission.” Though that term isn’t technically used for another 5 years. 100% donor is also what we’re looking for.
You would think after as many times that we’ve done this it would get easier. It doesn’t. I have faith that he is all clear but when I pulled into the parking garage all the memories from a year ago flooded my mind. It was hard to not be emotional. To not cry. Seeing all our nurses turned friends. Seeing him remember them, the hospital, his friend Charlotte. But not speaking to them broke me, again. I know I’m not doing this by myself. But most times it’s is just me and him. And when it’s just us all the time it makes me wish for someone else to be here for me. To hold my hand. To tell me it’s going to be ok. Because most of the time, it’s just me trying to stay strong for everyone. And I’m tired...
Thank you all for your loving words and support. I promise I’m not ALWAYS a crybaby.
Good morning y'all!
Today is Day 0, Transplant #2 Day!! His cells are here from Singapore, thawing!
I said a long time ago, the world will know his name and how true this statement is!! How great after all the messages from firefighters all over the world, that Deon gets cells from Singapore!!
It's shoutout time, this page has been a bit too quiet!
Please leave prayers, thoughts, and excitement for today in the comments below! Let's show Deon this world is behind him!
September 21, 2017
Well we are on day +7. Which means it's only been a week since transplant. Crazy huh?
In the past week we've had Neurologist check out MRIs, Psychologist, Speech Therapist, Occupational Therapist, Physical Therapist and yesterday even a spinal tap to test fluid for infections to see if there's any underlying reason why he went from an articulate 4 year old to a 4 year old who barely says mom. To say it's been frustrating and sad would be an understatement. Today he had this EEG done to see if there's any history of seizure activity... it was going good until halfway through and he lost it.
Please keep praying for Deon, these days I don't know which is worse, him not talking, his tantrums, or just the not knowing anything in regards to his transplant. XoXo
October 2, 2017
Day +18. I thought these days were over.
Besides the hair loss no changes.
Tantrums galore and I'm not gonna lie, more times than not, they hurt my heart.
Today is a hard day for many of my friends and family in Las Vegas. You're in my thoughts and prayers.
Sissy I know this is a hard day for you since you have so many friends in the industry. Wish I could hug you. Kassidy I pray you find peace after this tragedy. Seeing what you saw, I couldn't imagine.
October 5, 2017
Hey everyone!! We are on Day +21! One day closer to that Day 30 mark we're waiting for!! No vast improvements but I'll take any improvement I can. That being said, today during speech Deon sang along for many of the letters in the ABC song. To say we were all surprised is an understatement. The speech therapist also sang the Happy Birthday song for Trae (he turned 6 yesterday) and at the end instead of saying "you" he said what sounded like brother. It was so adorable. He's actually eating small portions of food which is also incredible! He's at 16.8-17.1 kg (depending on much liquid he's retaining). If y'all can remember there was a time he got all the way down to 12.2 kg!!! So, we take it one day at a time...
October 10, 2017
Hey! We're on Day 26 and still no changes in counts. Waiting is so hard.
But this happened last night.
I'm thankful every day he says a couple words here and there. One day while watching a movie he said the name of my Mom's cat, Jake. He also said macaroni. And star and knew the fire engine from Cars was named Red...
October 11, 2017
And it's Day 27!!! There is FINALLY white blood cells!!! Only .1 but it's better than <.1 so grow baby grow!!!
His ANC is 50.
There's only one way to go from here...and that's UPPPPP!!!
October 16, 2017
Today I'm chalking up as a win.
Today the results from the bone marrow aspiration show very few cells. However, the cells they do see...ARE 100% DONOR!!
Also today Deon had a CT scan and all is clear. No infections.
So now we wait, patiently. The WBCs are fluctuating but still very low.
Please, pray. And show support for my bug by wearing your shirt and posting pictures.
I love you all and thank you for always supporting my bug.
October 23, 2017
My bug is getting ready to go in for another bone marrow aspiration. Please pray he's still 100% donor cells!
He's said 18 (the nurse was counting down for his blood pressure). Watch (no clue where that came from). Bubble (Bubble Guppies was on). and our favorite No! (when the nurse said No, don't kick mommy).
October 30, 2017
It's been some of the darkest days ever since December 13, 2016. But today, there is light at the end of the tunnel. Can't post too much on it now because there's still a long way to go, but today is a day that we mark our calendars as Day 3!!! Thank you everyone for your continued prayers. This fight is far from over, but today is a victory!!
October 31, 2017
WBC 2.97. ANC 2080!
November 3, 2017
Day 50 post 2nd transplant
Both WBC and ANC took a hit today.
However his tpn has been being weaned off and he now eats at least 5 bites of things each meal! That is HUGE! He also hasn't had fevers, no throwing up, and taking most of his meds by mouth.
These are all leaps and bounds but we aren't out or home yet. Please keep praying for my bug. He still has yet to return to "normal" and hasn't spoken full sentences in at least 2 months now.
Pleeeeeease, I can't express enough to look into the cannabis oil and watch some videos of it healing tumors It's a natural healing essential that has been here for us to use God bless you and your family