The first day McLaren complained of head pain was the night of August 23rd. The next day, another complaint. Over the course of the next couple days she would continue to complain of head pain intermittently. It would come out of nowhere, meaning it didn’t look like there was something specific she was doing at the time of the pain. She would say “mom, my head hurts” and we would advise it was time for a break and to relax for a second. The pain wouldn’t last too long, first starting only a couple of minutes and then she’d be back off playing again. She would grab the side of her head abruptly like it was a sharp pain. She was grabbing around her ear so we were considering maybe an ear infection or something sinus related.

On August 27th she was taken to her first pediatric appointment for the pain. They assessed her, explained that children don’t really get headaches and we proceeded with just monitoring her symptoms. We expected this to be their answer, as for most things that is their answer, and we did that.

Over the course of two weeks the same pain remained true. Not much change in level of pain, but still something she was experiencing every day. At that point, my wife called the pediatrics back to take her back in. That appointment was scheduled September 12th. They assessed her, took some blood to check her iron, checked her eyes and all were clear. We thought the pain was still odd because kids don’t really get head pain. A CT was ordered. That CT wasn’t able to be performed until September 24th.

A lot happened in those two weeks waiting for the CT.

Monday September 22 it seemed the head pain was becoming greater and more bothersome to her.

Tuesday September 23 she did go to school. She came home and was pretty down for the rest of the day. That night she was in a lot of pain, did not sleep at all. She was complaining of being very hot but didn’t have a fever. She moved room, to room, to room trying get herself comfortable.

The CT wasn’t until 10:00am on September 24. She spent the whole morning in agonizing pain, going in and out of sleeping. While in the waiting room for the CT she threw up due to being too hot. She also threw up in the parking garage due to the heat. Stevie couldn’t find the car in the heat of the moment of it all and they were stuck there for a moment until she could re-group. At home she spent the day trying to relax her body and deal with the pain and the heat. We did attempt acetaminophen closing to the evening. She had drank some grape juice and about 15 minutes later she projectile threw up.

The CT came back normal. The CT was with no contrast. Always get contrast.

She woke up September 25 still in pain at which point Stevie said, “We’re taking her to the ER. Something isn’t right.” At the ER we presented them with all her symptoms and explained this is seeming like an extreme migraine (the best way we could describe her pain as Stevie gets migraines herself). They checked her vitals, her eyes, all the basics. They did ask her to walk for them but she was not wanting to participate. (In hindsight we should have MADE that happen)

The neurologist said kids don’t really get migraines but we are going to treat it as a migraine because that is how it’s presenting. At that time he also ordered an MRI to be sure given this was such an off circumstance.

They put her on a steroid and a migraine preventative and sent us on our way. On our walk out of ER, Stevie noticed McLaren limping on her right leg. (At this time we should’ve turned around and had that looked at) but at the time we thought maybe she was just tired & lethargic from all the pain and laying down for a long time.

The MRI was scheduled for October 6th as that was the soonest availability.

McLaren did seemed relieved of pain after being on the medications for about a day. But the limping persisted and became way more obvious. Stevie became quite concerned over this. Then she started to notice McLaren no longer using her right hand (she is right handed) and watching TV with her face sideways. She called to see if this was something she needed to report to the pediatrician or the neurologist. They didn’t even say anything, they simply just said they have moved her MRI up to October 1st.

Tuesday September 30 she went to bed without her migraine preventative as she fell asleep around 7:00pm. That resulted in her being in immense pain again the morning of the MRI. The MRI was not scheduled until 10:45am.

We got called into the back after the MRI and the neurologist just profusely apologized that this was missed on the CT but she has a large mass in her head and we needed to go across the street to the ER to start moving forward on caring for her. After being admitted into the hospital, we noticed her right eye start to cross and not hold stable all the time.

On October 8th McLaren received her diagnosis of a DMG, diffuse midline glioma. The hospital wants to start radiation immediately. It would be sedated radiation M-F (every day) for about 6.5 weeks. Her prognosis is about 6 months.

The road ahead is long and we want to share our journey as much as we can. The only priority Stevie and I have right now is providing McLaren with the best quality of life with the best treatment available.

McLaren is tough as a honey badger and we are going to explore all options to fight this villain.

We were hesitant to start a go fund me , go fund me takes about 3% of the total goal amount and .30 cents of every dollar.

The goal of the fund will be to explore options and trials that are outside the normal Healthcare practice (radiation for six weeks straight while sedated)

Please share this to everyone you love and to the stranger during your day. We thank you from every fiber of our beings.