Back on November 29th, all 3 of our kiddos were hit by a drunk driver. They had gone shopping on Black Friday at Target and were on their way home. It was at the intersection of Lucent and Highlands Ranch Parkway and Bella was driving. TJ was in the backseat. Everyone was wearing seat belts. The drunk driver turned in front of my kids (they were going 40 mph and it had just started snowing so the roads were wet). Bella swerved to miss her but smashed into the rear right corner panel of her truck, smashing the front right side of Bella’s car. We got the call and rushed there (less than a mile from our house) and on our way there, the fire truck and ambulance pulled out in front of us to get there. Corey turned to me and said, “that’s going to our kids!” As any mom can imagine, my heart sank and I was terrified. As it turned out, when we got to the accident, besides being shaken up and upset about her car, the kids appeared to be ok. The paramedics checked Bella out for side pain and said it was from the seat belt and that she was ok. We all went home. It was 2 days later that Bella ended up with major neck, back and head pain (and is still in treatment for a whiplash concussion), and Lexi also experienced back pain and is in treatment for that. TJ, on the other hand, seemed to be ok...
Fast forward to January 28thish. TJ said to me, my back hurts...and I was a little confused but just told him it was probably due to PE class or he had started working out in the basement so maybe he pulled something...but for 4 days it just got worse and worse and then he said, “It hurts to breath.” Ok, into the chiro we go. We have an amazing chiropractor (Dr. Hicks) and he thought his rib was out (which is what I thought too). He took xrays but nothing showed up. That’s when we thought we would try PT. Now again, we have an amazing PT (Matt McLean) who did some soft tissue work and worked on him for awhile. We decided to ice and just see what happened. Unfortunately, it just kept getting worse. At this time, both professionals thought that it was possible that this was from the accident, even though it was 2 months later...things like this can show up later on.
Ok, so it just got worse and worse to the point of him not being able to stand up straight or even walk. We took him to get an MRI on March 4th and that’s when we found a cracked vertebrae! This poor kid had been dealing with this pain for SO long and we felt terrible. So now we go to PSL orthopedist to have them check him out. They looked at the mri and decided it was not surgical and that he just needed to rest, and heal and it would take 6-8 weeks for that to happen. They also said it would get worse before it got better. They were right on THAT...he kept having a TON of pain and some days were good and others were horrible. After fighting with the doctors, I finally got him on a muscle relaxer and a stronger pain med. He was doing better. He could at least sleep and could move around a little bit. He was still going to school but was coming home some days in the middle. He even started using a knee scooter at school because it was so hard to get around. Poor little man was really in a lot of pain. We got in with a pain specialist and he gave him a back brace. This was life changing for him! He was finally able to sit and stand straight and was feeling pretty good. Now keep in mind, at that point, we were at home for Spring Break and then after that, virtual schooling. So that was actually good for him because he didn’t have to go walking around school and all of that. BUT his pain level fluctuated every day. One day would be a good day and then a bad day. It was miserable.
So then he woke up about a week ago and said that the pain had moved. MOVED? I was like, what do you mean? He said that it hurt lower down in his back and only on the left side. He said it was a different kind of pain and it was pretty bad. So off to the PT we go and he did some tissue work on him and was working with him to build his core strength but he was concerned that the pain had moved. He said that sounded very strange and that he suggested a new MRI. We had a telahealth appointment with the pain specialists and they agreed. So off to Simon Med imaging again. FYI, if you have a script for an MRI, you can get one for $260 if you pay out of pocket and don’t go through insurance!!! So that’s where we were going!
MRI on April 28th (Corey’s B-day). We go in, have the MRI and literally 2.5 hours later the doctor calls me. She said, “Are you somewhere you can talk?” Uh, what the hell? Why would we need to talk in private? It was just a follow up MRI...oh Lord was my life about to be turned upside down!!
Dr: “I just heard from the radiologist and they told me to call you RIGHT NOW and tell you to get in the car and get TJ to Children’s Hospital!”
Me: “Children’s Hospital? What?”
Dr: “The fracture in his back had gotten much worse.”
me: “Does he need surgery?”
Dr: ...long pause...”well, at the very least.”
Me: “What are you saying? What else do you know?”
Dr: “They think it is a rare form of CANCER.”
Me: “WHAT? How can that be? What kind of cancer?”
Dr: “It’s called LCH (Langerhans cell histiocytosis)”
Me: Googling this...crying...freaking out because the FIRST site that I clicked on said it was INCURABLE and only a 50% survival rate.
So after calmly telling Corey that we now have to go to the hospital, when we get there, they only allow one adult with each child because of this damn virus crap! So Corey goes home and I stay. They take blood and after 2.5 hours, we find out that all his blood work came back normal. NORMAL! What the hell? Ok, so they send us home and tell us to follow up with the hematologist/oncologist tomorrow. Now in all of this, we have not told TJ any of that...we just told him that the crack got worse and we need to check some things out. He’s a smart guy so he knew something was up but he went along with it.
Back home, both sisters know what’s going on and are freaking out and we now are trying to remain calm. After everyone went to bed, Corey and I completely fell apart and didn’t sleep all night. We paced, we cried, we freaked out, we did every emotion you can imagine. It was the longest night of my life. Besides the night when I was told my mom had a stroke, I have never had such pain deep in my heart that I just didn’t know what to do with. How do you get out of bed and go on with your daily life with all of this unknown? How do you face your kiddo after telling him for the past few months that he needed to stand up straight and suck up the pain because it “must be healing and getting better right?” FOR THE LOVE. Talk about mommy and daddy and sister guilt! The internal beating up is pretty fierce around here!!!!
Ok, so Wednesday morning I start making calls at 8am. I go and get the MRI on disc with the report. I call the Children’s Hospital Cancer Center...wow...that’s not a call ANY parent wants to make!!!! Just listening to the option on the phone was horrible! I just sat and cried as I picked what number I wanted...scheduling for hematology/oncology. I got an appointment at 2!
I contacted my awesome chiro because I knew he could read the MRI disc and I wanted to see it with my own eyes. I will attach the photo I snapped of the side by side images from March 4th and April 28th. It was the scariest part for me to see it with my own 2 eyes. In 2 months, his disc between his T8 and T9 had completely disintegrated! Like, GONE. Take a look! It’s really bad. AND his vertebrae is now not all there either. WHAT THE HELL????
So we go into the oncologist office and Dr. Garrington comes in and here is our dialog:
Dr: “What do you THINK you know?” (LOVED that he started with this!)
Me:”That I am scared to death that my kid has a rare, terrible form of cancer.”
Dr: “EH, not so bad...”
Me: Staring at him like he had 2 heads...trying to figure out if he is a complete jackass or if he is kidding. Keep in mind, we are all wearing masks so I can’t read his facial features and I can only see his eyes . “What do you mean “not so bad”?
Dr.: “If this is LCH, it’s not that bad.”
Me:” UH that’s not what the internet says!”
Dr: “Well you are going to get off the internet and only go to the website I give you (www.histio.org). All other websites are NOT accurate and I am the resident exert in LCH so you will listen to me. This disease is treatable and curable!”
Me: “WHAT? Are you kidding me? It’s curable? It’s treatable?”...crying ensued
Dr: “YES! If this is what it is, and I suspect it is, we can treat and cure it and he will move on with life without it. Also, I called it a disease...it is a disease NOT a cancer.”
Me: “OK, why does everything else call it a cancer?” Again, I got in trouble for reading the internet...bla bla bla
Dr: “So here’s the deal. With this disease, 50% of the time, when you take a biopsy, it actually triggers the body to go in and fight against it and kills it. 50% of my patients, we don’t even need to do treatment!” Now, have you ever heard of a cancer doing that? NOPe...that’s why it is not a cancer.”
Apparently there is a 100 year old debate about whether this is a cancer or a disease. We are going with disease!!!
So he goes on to tell me that he treats about 12 kids a year with this...12 kids! He said that half of them never need treatment. The other half have to do a “chemo-like” treatment that is NO WHERE near as bad as regular chemotherapy. LIke the kids don’t lose their hair and they tolerate the treatment really well. So we are going with the other 50% and that this biopsy will heal it!!
So even though he hadn’t seen the MRI yet (it hadn’t uploaded yet), he said this all looks, sounds and walks like a duck so we are going with that diagnosis until the biopsy on Monday
Here are the side-by-side MRI scans. The specialty radiologist says they see “healing” and no new hot spots. Things seem to be going well. He does have some new shoulder pain but hopefully after pt tomorrow we will see if it’s just muscle.
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