The back story...

Welcome, and thank you for following Levi on his journey. This first post will be a bit long as in less than two weeks a lot has happened. 

Before we get into Levi's story, a little bit about his amazing family. His mom, Beth, is a science nerd and loves soccer, and his dad, Zack, served our country and can be found four-wheeling on a good weekend. But mostly, they are truly AMAZING parents. In fact, we (all the siblings) are a bit jealous of their parenting skills. Big brother, Owen, is six years old and loves Pokemon, the weather, and telling jokes. His jokes are HILARIOUS, just ask him.  Levi, three, is a charmer, loves Blaze from Monster Machines, and really wants to know "what your favorite color is" but will tell you that you're wrong. You'll learn much more about them and their families as we go along. 

Alright, on to why we're here...

Sunday, June 14

Levi had a seizure and was taken to the ER. At the hospital, they did a scan and found fluid on his brain. He was taken to surgery to relieve the pressure on his brain and put on a ventilator. The doctors found a mass on his brain and scheduled another surgery.

Monday, June 15

Levi went into surgery to remove the mass on his brain. The surgery took more than 8 hours. The mass was larger than first suspected, 1.6cm. The tumor was close to his brain stem and the doctors removed as much of it as possible. After the surgery, Levi was scheduled for another MRI to see how much of the tumor was removed and a lumbar puncture to see if there were cancer cells in his spine. The possible diagnosis was Medulloblastoma. 

Tuesday, June 16

Levi was breathing well and the doctors tried to take him off the ventilator but Levi needed more time, so he was back on the ventilator. 

Wednesday, June 17

Levi received the Anointing of the Sick. The doctors put a feeding tube in. 

Thursday, June 18

Pathology confirmed Medulloblastoma and the cancer had spread to his spinal fluid. The typing of the cancer will take longer. (Brain cancer is a little different as it gets "typed" instead of "staged".) Levi remained on a ventilator and heavily sedated to help him heal. Beth and Zack met with doctors to form a plan. The plan will include high dose chemotherapy and stem cell salvage. This means that they will use his own stem cells in treatment. 

Levi opened his eyes and was awake for about 30 minutes. We were over-the-moon excited. 

Saturday, June 20

Levi had a few seizures but the doctors worked hard to find the right mix of medicine to get them under control.

Sunday, June 21

Levi's seizures are under control. 

Side bar:  Owen caught a fish. A pretty good blue gill. 

Monday, June 22

Levi was responding to commands. He was doing ninja kicks and moving his arms.  

Tuesday, June 23

Levi had been seizure-free for 24 hours and another surgery was scheduled to place a shunt to drain the fluid from his brain. The doctors planned to try to take him off the ventilator. 

Wednesday, June 24

Levi went back to surgery to have a shunt placed in his head. He was taken off morphine and was doing well breathing on his own. The surgery lasted about 3 hours. If you're counting that's surgery number three.

Thursday, June 25

The breathing tube is finally taken out for good. He was much more comfortable and took a nap.

Friday, June 26

Levi was on the weekly zoom call with his extended family. He was a little grumpy (who could blame him, right?). He ate some ice cream to help his sore throat from the ventilator removal. He moved out of the PICU to the 11th floor of U of I Children's Hospital. That's the floor overlooking the football field and where all the fans turn and wave to the kids at the end of the first quarter. Google it, it's truly a beautiful sight.

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Thanks for hanging in there throughout this long post and the first two weeks. We cannot thank you enough for the outpouring of love, prayers, good vibes, karma, and smoke signals. We feel your support and feel extremely blessed to have all you caring so much. We know along the way there will be tears and trials, but as a family we are goofy and always find the bright side. And as mentioned at the beginning of this lengthy post, Beth and Zack are truly AMAZING parents, and their faith, love, and humor along with your support will help them navigate this really [fill-in-the-blank] situation. 

We love you... and don't you forget it.