Mid February my husband and I noticed that Paxton’s eye had become lazy. I was at first iffy on it… every time I asked him to look at me he would he get goofy. Kristian and I started talking about it .. and we couldn’t figure out when it first started. I had this thought of OMG! It’s a brain tumor.. it’s brain cancer. I was working urgent care at the time and would ask some of the providers about it.. I was assured I was crazy and that brain cancer just is so rare and not to worry.
I asked my husband to take him in, and then asked him to ask for a CT scan order. Well his being a wiggly 5 year old he wasn’t the most cooperative. The doctor that day ultimately referred him for an ophthalmologist. We ended up lost in the referral mess .. there wasn’t anyone in 75 miles that was seeing someone his age.
Now skip ahead to the last week of March. Paxton starts complaining of headaches. I gave him a dose or two of Tylenol over the course of a couple days .. thinking it was allergies. I had been seeing a lot of patients with allergies … it’s San Antonio Texas … super common. I never put this together at the time, but he had fallen down a couple of stairs one night. It was the night after I fell down the stairs.. so I didn’t think it was him. He balance had changed but he giggled and laughed and it seemed like he was goofing off.
March 31. I get home from work. Kristian points out that Paxton isn’t walking straight. I see it through his playing around and laughing. I advice Kris to being Paxton into my work in the morning as Dr. Levcovitz is working that morning and he basically one of our guru doctors who happens to have a heavy pediatric background.
April 1 st. Thursday. It’s around 10 am when they come. My husband tells me that Paxton couldn’t even climb out of the truck on his own. Dr. L goes in… I’m off taking care of someone else. Just a few minutes go by and Dr. L tells me “ Amanda … ER transfer.” I go dumb and ask him the adult ER or the children’s ER. He tells me Children’s. I go numb… that’s my kid. That’s not my patient that’s my kid. I ultimately cousins complete the transfer the doctor had to. Dr. L talks to the ER doctor and tells them Paxton needs a stat CT scan.
My urgent care is owned by this hospital chain so ER transfers done by us .. it already sets off a chain of events on that end. They haven’t left yet and the ER is already getting ready for them with a room. I call the guy that was gong to come in at 2 pm. There is no way I’m staying here. I even tell him to call me when he is an exit or 2 away because I’m going to leave.
(Some more back ground on this particular doctor .. he doesn’t send people to the ER for anything small. It’s usually a pretty big deal when he does. He’s in his 70s and has seen a great deal of things. His judgment calls are impeccable.”
10:41 I’m leaving the parking lot. The hospital is close. I run through there, by passing hospital Covid screening desks. I’m also still in navy scrubs, with my stethoscope and iced coffee in hand. Navy is that hospital’s RN color .. so maybe that helped me look like I belonged. I get into the room with Kris and Paxton. We all go in for the Ct scan.. it’s about 11 am now.
11:30 Dr Perkins the ER comes in … I already see a brain scan on her cell phone. I see a massive ball like structure that doesn’t belong. I already knew before she said anything. “It’s a mass” she barely gets that all out while showing it to us, before the nurse comes in saying neurosurgery is on the phone. I
Somehow asked. “Can I take a picture of this?” She leaves her phone for me. Moments pass and she comes back… and tells us that Dr. Gennuso from neurosurgery was coming down to talk to us.
Everything is moving fast but slow motion at the same time. We meet Dr. Gennuso. She explains that he needs surgery … right now. That his brain is under a lot or pressure the mass is backing up the fluid in his brain. No time for a second opinion. I ask her when this needs to happen… “ they are getting the OR ready and everyone in place now.”
We go over risks.. complications of everything on her end alone. We know it needs to be down.. We have seen the changes in balance alone from 9 pm the night before to 10 am already.
They had to get an anesthesiologist to come in, I signed her consent form in the hall way. Outside the door of the OR. It was 1:26 pm when I signed my name.
He has his drain placed. Everything went as great as it could go. Now we discuss the rest of what will happen.
Somehow in the first 36 hours … I took that image and sent it in an email to the brain tumor clinic or St. Jude. I told Kris what I did …. After I did it. He kinda brushed me off … telling me nothing will come of it. We’ll see is what I said. We hung up. I call him back in about 20 mins. I had just gotten off the phone at that time with a 901 number … Memphis Tennessee. It was Dr. Gajjar at St. Jude. He already accepted Paxton as a patient. He went ahead and told me to allow San Antonio to perform this surgery… and he will see us soon. Right away he emailed me back and CC’d my contact person Tabitha. She would be the one holding my hand for the next couple of weeks. Getting all of our medical consents for tissue samples to be sent to them and such… from this point on she told me I was taken care of.. just get there.
4-5 full tumor removal. Thankfully they got it all. Their MRI showed no spread.
Through trial and error his brain never was able to start absorbing the fluid the way it should.
All of this time.. Paxton is bed ridden.
4-14 a shunt is placed. I’m iffy on this .. I call and get advice from Dr Gajjar. He gives the go ahead and said he is in agreement with this. This now allow Paxton to get out of bed. He has to relearn how to walk.
4-16 we get released. Paxton can hardly walk. Defiantly unable to walk unassisted. He on his wanted to walk out of the ICU doors… it took a while .. but he did it. Then he rested … then took the steps out of the front of the hospital.
His wheelchair gets delivered that day.
4-20 Paxton and I get on a plane to go to
We ultimately learn that while they did get all of the tumor .. there was spread. There ended up being 6 spots in the cerebellum that are inoperable.
All through this we kinda got a baby Yoda theme going.
May 4th … Star Wars day … May the force be with you … that was the day Paxton started the first his 30 rounds of radiation. He ultimately learned how to walk again. Becoming strong enough to run.
Radiation has caused 4 of the spots to disappear. We are still watching the other 2, they have become lighter. So that is a plus. As of 10-1 he completed 3 of 7 courses of chemotherapy. He has needed a number of blood products, each round of chemo causes him to need 2-3 transfusions. He has needed a g tube placed… his weight dropped to 41 pounds thankfully since 9/9 he is up to almost 47 pounds.