Conner’s Story

Site created on March 1, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place.

On February 18, 2019 Conner was diagnosed with Medulloblastoma, a malignant tumor in his brain and spinal chord.  The next day he underwent a 10-hour surgery to remove the tumor. The weeks prior to the diagnoses were filled with increased nausea, headaches, and malaise. On February 7, our first appointment with neurology, the thought was that he had stomach migraines which creates the same symptoms. We started a medicine for the migraines but it didn't end up helping. Our neurologist scheduled an MRI but Conner couldn't get in right away. February 16th he threw up blood during a nauseous episode. Unsure what to do on the weekend, we called to our neurologist. The on-call neurologist said to watch it and to stop the Ibruprofen we were giving in case that was irritating his stomach. Monday, we couldn't take seeing him like that anymore. Something else had to be going on. We took him to our local hospital. Instead of the CT scan we opted for an MRI in Wausau. We then drove there and after an MRI were told it was a tumor. Devastating.

Conner was taken by ambulance to UW Health in Madison, an AMAZING hospital, with surgery to follow the next day. We're so lucky to have had the best surgeon who works on cases like his every day! He removed the brain tumor but, unfortunately, a full head/spinal chord MRI showed that the malignant tumor had spread down his spinal chord. The current plan is that once he's recovered from the surgery (still in PICU) and completes rehabilitation, he'll need to undergo weeks of chemotherapy treatment known as Head Start 4. (  https://www.mskcc.org/cancer-care/clinical-trials/17-475 ) First, he would need stem cells harvested and stored. Then he'd undergo intense chemotherapy in the hospital for two weeks, off a week, on two weeks, off a week, on two weeks--replacing his stem cells once complete (which will also need a recovery period). 

As we've already discovered the long cancer journey will have unpredictable ups and downs. Please don't feel obligated to donate--well-wishes, thoughts, and prayers are plenty. But if you are interested, the donation would help with medical expenses, travel costs, and supplement household income (we'll be returning to work slowly, spending as much time with Conner and his sister as needed).

We're holding strong, alternating caring for Conner and spending time with our 10-year-old daughter--taking it day-by-day. 
We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Amber Olszewski

We are all still reeling from the clear scans. Conner continues to take things as they come--he's so level-headed! We're very thankful. 

We have some disappointing news--Conner's decided to no longer go to Disney World for his Make-A-Wish wish. It was a really hard decision but there was a really good chance he wouldn't have gotten to go at all. Our wish grantor said that MAW will not grant any travel wishes until there is wide-spread use of successful vaccine AND community spread was contained--to think we were only 4 days from leaving in March. With so many uncertainties Conner has decided instead to ask for a fishing boat. He has found his love for fishing and wants to go all the time. The other day he was reading through the Bass Pro Shop (thick) catalog. He's in awe of all the different types of lures, jigs, and baits. So far he's only caught blue gills and a few small large mouths but I can't wait to see him real in his first walleye or northern. One of us will have to hold onto him though because he's so little (despite our attempts at feeding him extra calories he continues to weigh between 66-69lbs). Although the trip to Disney would have been amazing and unforgettable, this will be something tangible he can use for many years to come. 

Conner continues to struggle with separation anxiety. Back when he was going to school he had a really hard time letting me go and felt very anxious when i would leave him. He would get red in the face and upset. Eventually, he was able to stay at school, without me in the building, for hours at a time. We've always been there for him, day and night, through the past year and with that he's developed the need to be near us, mainly at night. Our challenge now is getting him in his own room (which is just under our room in the walk-out lower level, ie. basement). It doesn't feel like a basement and it's the largest bedroom in the house! When he first came home from the hospital he slept in the living room on his mattress (so not to wake others) so one of us could stay up with him  and adjust feedings. Next, he moved to the floor by our bed. In an attempt to motivate him we painted his room, put up shelves and organized his toys and books. We even put together our fish tank and got him some fish. He liked it at first but still was uneasy going down there. With that, Ed volunteered to sleep on the floor by him for a few nights to get him comfortable again. Well, a few nights turned into months. A couple weeks ago he decided he would rather sleep on the couch than sleep in his room so I invited him in our bed for a night--big mistake, he stayed for 2 weeks. I have to be honest that I didn't mind. 

All that being said, tonight is the trial night of Riley sleeping in his lower level bedroom and Conner sleeping in her first floor room. Riley wanted to switch rooms so that she would have more space and Conner seemed happy about it. So far so good. Of course, Riley is telling us that she's getting a bedroom makeover--new fancy wallpaper, new paint, a loft bed, and new carpeting. A girl can dream! We'll see what we can do. It's going to be a lot of work but I'm hopeful everyone will be happy with the new arrangement.

Some people have asked about ways to help so I'm including Conner's Wish List from Amazon. There are physical therapy items to help him stretch his tight muscles, socks, books, and what he wants most... an iPad. LOL. Apparently, he's outgrown his Amazon tablet (they are quite basic though).
https://www.amazon.com/hz/wishlist/ls/16SDEA4DHGVBH/ref=nav_wishlist_lists_1?_encoding=UTF8&type=wishlist

Thank you all for your love and support--we feel it with every card, comment, "like" and donation.
 
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