ThorenStrong

ThorenStrong Hi,I'm Thoren.I am 4 years old,I have Down Syndrome & Acute Lymphoblastic Leukemia.

It's Wednesday and Mom has gone down a rabbit hole.....Today was super fun in class we had some visitors that brought in...
05/27/2026

It's Wednesday and Mom has gone down a rabbit hole.....
Today was super fun in class we had some visitors that brought in some of their pets. ( Mom got the heeby jeebies) I liked touching their different skins.
Anyway last night we watched an amazing documentary on Youtube called "Saving Grey". This is what triggered Mom to do a whole bunch of research. I hope my teams are ready because she has lots to ask them about leucovorin, milk thistle and liposomal gluthahione. Why? Well here is some interesting things:
I have the MTHFR gene mutation which means in order to absorb vitamin B i need a methylated version of the vitamins. Fun fact leucovorin is a form of folinic acid that helps the body process gluthahione. People with down syndrome have low levels of gluthahione and people with autism sometimes have low levels of......folate( folinic acid). By giving them leucovorin it unlocks the ability to process folate and helps with speech. Gluthaione helps to unlock cognitive function. Can you imagine if these 2 simple things could help me form the ability to talk???
Milk thistle cleans the liver and mine is angry and probably needs a good bath 🤣. Mom is still doing research but I sure hope these doctors have an open mind when she presents her case. I have so much I want to say and it just won't come out! I hope your mid-week is becoming as interesting as mine. Love ya lots- Thoren

In the kitchen making Aunt Elsie's oven mashed potatoes with sissy. We already made the meatloaf( Aunt Kay's recipe) and...
05/26/2026

In the kitchen making Aunt Elsie's oven mashed potatoes with sissy. We already made the meatloaf( Aunt Kay's recipe) and put that in to cook. I am so excited that I had to come supervise and bring my Peppa blankie. I wasn't in a great mood this morning before school but I am full toddler right now according to Mom.
Update from Hopkins: the dumb insurance company hasn't approved the liquid thyroid medicine I need. They think I can't absorb gluten so Levothyroxine isn't really getting into my system. I THINK INSURANCE COMPANIES ARE A SCAM!!! So if you can please cross your fingers that they get it approved soon🤞

Isn't this cute? Chat gpt is sure fun to play around with
05/25/2026

Isn't this cute? Chat gpt is sure fun to play around with

Good morning Thoren Squad....it's Sunday that means I get to spend the day with Mommy. I have been such a good boy today...
05/24/2026

Good morning Thoren Squad....it's Sunday that means I get to spend the day with Mommy. I have been such a good boy today, I even slept through the night last night. Mom and sissy are working on my make a wish trip scrapbook so I can have all my memories in one book. We took loads of pictures ( over 1600) from the trip so Mom said she is gonna pick the best ones and file the rest for later. I hope everyone is enjoying their weekend! Love, Thoren

Hey besties it's Friday! Guess what Miss Bobbi my wonderful para found some special adapters for feeding pouches and I c...
05/23/2026

Hey besties it's Friday! Guess what Miss Bobbi my wonderful para found some special adapters for feeding pouches and I can eat using them like a big boy. Sissy said I barely make any mess and I have eaten 4 pouches in the last 24hrs. I had a rough night last night getting comfy to rest but today has been much better. I got my IVIG injection last night after my bath and I am excited that Mom will be home to snuggle after work tomorrow and on Sunday. It's my bedtime but I wanted to pop on and say hi to all my squad. Love you all to the moon and back - Thoren

Hey besties.......today was a good day at school. My friends and I had so much fun playing on the playground. I have mis...
05/19/2026

Hey besties.......today was a good day at school. My friends and I had so much fun playing on the playground. I have missed them all so much, I'm super glad I was able to go be with them today. Mom loves getting photos of me being such a big boy at school. She told sissy's that this right here is the reason we need to get my backyard play area done before school is out for the summer. I hope everyone stayed cool in the heat today...love, Thoren

Hey besties.......I've been outside helping with the yard project today. Don't worry we aren't driving with my foot in t...
05/17/2026

Hey besties.......I've been outside helping with the yard project today. Don't worry we aren't driving with my foot in this position, I was getting impatient waiting for Dad so I decided to chew on it a little bit. They have done so much since 7am today and I keep overhearing Mom tell them about making a safe backyard for me so Im guessing a lot more outdoor time is in my future 😍. I love being outside I just wish the bugs would stop trying to eat me. I know I'm sweet but these no see ems and skeeters are outta control. Hope everyone has a blessed Sunday! Love, Thoren

Good Morning besties just a quick update. We got the 💩 moving in the right direction. I asked for frenchy fries yesterda...
05/16/2026

Good Morning besties just a quick update. We got the 💩 moving in the right direction. I asked for frenchy fries yesterday but Mom said I have to wait until later today or tomorrow to have some. She did promise to make me a nice smoothie when she gets off so I can get some extra vitamins in my belly. I am home with my sissy's and dad until Mom is back from work. I wonder what trouble I can cause while shes away🤔 I will definately think of something. I hope everyone has a great Saturday. I was invited to one of my bffs birthday parties but Mr. Spleen is a little too large for me to go in the bounce house. I sure hope my bestie knows I appreciate the invite and I promise I will make it up to him. Love, Thoren

Hey besties, before Mom's phone dies I wanted to give you a little update. So far today at Hopkins we have learned I hav...
05/14/2026

Hey besties, before Mom's phone dies I wanted to give you a little update. So far today at Hopkins we have learned I have an ileus in my intestines. Whats an ileus?? Great question.....it means that my intestines are trapping the 💩 inside them instead of letting it travel its required path to exit. They don't know why I have it yet but they will figure it out. Also my ANC kinda tanked from almost 3k to under 1 so im kinda neutropenic at the moment and my immature granulocytes are high which Mom says to her it means whatever im fighting is either infection driven or autoimmune driven. However since I am still fighting hypogammaglobulanemnia I cant be tested for autoimmune conditions so she is doing lots of research using what she has found from The Mayo Clinic and St. JUDEs studies about post cancer autoimmune responses that would cause all of these organs to behave badly. Mr. Spleen and Mr. Liver are both still angry and enlarged and mr. Pancreas has basically retired from his enzyme career. I know my GI/Liver team has missed me but we could have arranged a play date instead of all this hospital business! Anyways thats all I know for now.....keep those good vibes flowing Love, Thoren

05/14/2026

Headed to hopkins prayers up please... mom will update once we know why im in so much pain

Hey squad sorry for the scare. I do in fact have a failed port so I need to have it removed. Mom is waiting on a call fr...
12/16/2025

Hey squad sorry for the scare. I do in fact have a failed port so I need to have it removed. Mom is waiting on a call from peds surgery so we can figure out when they can fit me in the schedule. Dr. F said no more pentamindine but I have to go to an immunologist to see how I am going to get weekly ivig. I also have to go back up and see my liver team because it was angry again today when I got examined. Im really ready for all this to be over so I can be free as a bird and not have to go to Hopkins every time I get a fever. Thanks for all the prayers and good vibes we will keep you posted as we get dates for all the things. Love, Thoren

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