2 days ago, I hear Adler talking to his pretend YouTube subscribers about himself. I was in the other room listening to him as I didn't want to interrupt because....what he was saying was astounding. I tried to video him saying it but it didn't do it justice.
"Hi guys, my real name is Adler Bear Carris, not Adler Assemble, and the bucket you see here is my puke bucket because I have brain cancer and I am going through chemo right now. I go every week to Memorial Childrens Hospital and I get chemo. It sucks, it makes me sick and tired and I have been going through it for many days now. I have brain cancer and my parents just didn't expect this and it makes them sad sometimes and makes me sad too. They didn't see it coming. I have pain in my butt too and I hate it. I take morphine for it. But chemo is working and my body is like a living weapon and cancer has not destroyed me yet. It lives in me and I am fighting it. I just wanted to tell you about me. The real me. I am Adler Bear and I have brain cancer and I am a living weapon. So I am signing off now. Bye guys".
I was crying listening to him say this because that just shows how he really gets it. He totally understands it all. He said " destroyed " because we don't let him say "kill" so that hit home. Hard. And I applaud him for this. I came into the room and hugged him telling him I heard what he said and that I was so proud of his strength and courage and that he most definitely IS A LIVING WEAPON AGAINST CANCER!!!!
Adler Bear Carris is a 5 years young boy battling pilomyxoid astrocytoma brain cancer. He has 2 spots on
his brain that house 10 small tumors and a tumor in his cervical spine and his lower lumbar spine is thick
with it. He was diagnosed in June of 2014 and has been undergoing chemotherapy since July of 2104.
The year has gone by with MRI’s every three months that cost over $22,000 apiece. Yes the family has
good insurance but that doesn’t cover travel expenses to and from Chicago, the hotel stays, food, and
yes the occasional toy for Adler as he wakes in recovery after being sedated for 2.5 hours for the full
brain and spine MRI. Sadly Adler also has hydrocephalus and adrenal insufficiency that requires
constant care as well. He has an amazing team of neuro docs from a surgeon to a neuro oncologist at
Lurie Children’s Hospital in Chicago and his oncologist here at Memorial Children’s Hospital that he visits
for his weekly chemo treatments and checkups. He also has a palliative care team that manages his pain. Adler has cancer yes, but it came in the form of pain and he deals with it daily. He has severe
chronic pain that is handled by a hospice team also at Lurie. And Adler’s father never misses an
appointment from weekly chemo to the every 3 month trips to Chicago meaning he has to take time off
work to do so and goes through his paid time off very quickly and Adler’s mother has had to take a leave from her work in the wine business to care for Adler 24/7 leaving the family financially burdened.
Help comes in many forms and the family appreciates it all more than their words can say.
Adler’s daily life isn’t like that of a normal 5 year old as his pain limits things like walking, running and
playing. He has found a form of physical therapy in the video game Just Dance and he loves it. He revels in the release and his love of music is fueled by that too. He also spends his days surrounded by his toys. Many of which consist of anything and everything Super Hero. He LOVES super heroes and could challenge the great Stan Lee on his comic book and super hero knowledge. So the Thor hammer is not only because he loves The Avengers which Thor is a member. Thor amazingly cannot feel pain and Adler appreciates that super hero power and wishes he could have that one. But if you ask him, he says he would possess all super powers. Why not? Who wouldn’t want them all?
He is a very spunky child full of light. And it is contagious. You cannot help but smile when you see him and his spirit has not dimmed through all of this. He will not let his disease define him and though he is limited he just wants to be like every other little boy, a super hero in his own right. He’s unique and special with a depth that is seen by those he meets. He has an electric personality that unfortunately has grown to be very adult like as he has had to grow up the last 2 years of his life amongst mostly adults like doctors and nurses who we consider family now.
Adler Bear Carris is what has caught on as their theme after the Jimi Hendrix song “Bold As Love” and he has been “putting the hammer down” on cancer for over a year and his battle is of unknown length as his tumors are inoperable and with chemo they hope to shrink them.
So may the strength of the mighty Thor, God of Thunder rain down upon our little super hero and find
him healthy and happy and strong for many years to come!!!
MRI results day! No new growth for Adler's tumors and after a full year of chemo treatment finally some shrinking!! Still have treatment to go but we finally see some results from chemo. Another MRI around Thanksgiving when his treatments should be finished. PTL FOR GOOD NEWS!
One year ago today, we met with Adler's neuro-oncologist to learn the devastating news that he has brain cancer. So upon this day I feel more emotional than usual. More down than up even though we have come so far. Reality drowned by memories of that cold room we sat in for about 45 minutes trying to absorb all the words and definitions and ask all the "right" questions. And leaving that room breathless and broken. Shattered and capsized, not knowing how to fight this killer but the weapons in place. My God, one whole year already with cancer.
Adler Bear Carris is a sweet 5 year old with hydrocephalus, and pilomyxoid astrocytoma. Grade 2 cancer. His tumors are in his spinal column and 2 spots on his brain. They are inoperable so they will always be there. The hope is to shrink them with weekly chemo treatments thru the next year. He has suffered with severe pain for over a year now. Its time for that to end. He and his parents can use all the support they can get! I can't imagine seeing my child in unbearable pain for months and going so long without getting an actual diagnosis. Your donation of any amount will help alleviate Adler's family of some of the hospital costs.