Journal

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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Journal entry by Amber Olszewski

Great news!!! Conner’s scans look great. See attached picture.

Last week Conner and I went down to Madison Thursday for his Covid-19 test (which was negative), and his MRI on Friday. We had a good time together, all considered. I was a wreck and was so nervous for scan results. Friday’s MRI went SO smoothly and we were thankful—it’s not always this way. Afterwards, we went straight back to our hotel and watched Star Wars :) He had a craving for McDonald’s so instead of dragging his wobbly body out to get some we ordered through UberEats—this was a first for us and so convenient. We got a kick out of how we could watch the delivery driver’s car travel to get the food and bring it back. We are easily entertained. Conner was pretty tired the next day but otherwise really good. 

Today, Conner and I went to Madison again to talk to all of his doctors in clinic. We talked about removal of his g-tube, when his neuropsychological test will be (end of July), and his treatment schedule. He's on 2 of 4 scans this first year then will go to every 6 months for two years, then every year. Unfortunately, his dr clarified that unlike other cancers, his chance of relapse will not go down to near 0% after 5 years because of the radiation. It'll remain higher than that. In the past, photon radiation in the brain has led to more cancer spots or other cancers in the brain. He had Proton beam radiation so there's less info on its side effects--we’ve heard the effects are less but so much has yet to be studied. He is considered to be in remission, though! 

Thank you all for your prayers! 


Journal entry by Amber Olszewski

Conner's been making great progress the last few months. Physically, he's stronger and his balance is SO MUCH better. He still has some wobbliness and trips but much fewer. He's loving to ride his bike and scooter, and swim in our pool! Many of his doctors recommended swimming as a great, low-impact way of getting stronger, specifically his back. His physical therapist was impressed with the progress he's made during the months we couldn't see her due to Covid. Yesterday, at PT he did a 'Superman' on the floor for 30 seconds (where you lay on your tummy, put your arms out in front of you and then pick up your head, arms, and legs and hold so that your tummy is the only thing on the floor)--mind you he also has a g-tube in his tummy. We were all amazed at this boy. We are to the point in occupational therapy where we're not sure how much more is needed. We have testing in July which will help guide us in the right direction. He's still working on labeling his emotions and his hand dexterity since writing is still a weak point.

E-learning through school was quite the challenge but we weren't the only ones who felt that way. We now have 4th and 6th graders! What!? Yesterday, I met with Conner's school team and made plans for Conner's ESY (extended school year). With e-learning I was able to see first-hand things with which Conner struggled. We talked at the meeting about closing those gaps with extra one-on-one time with his 4th grade teacher, "Ms. A", during the summer. Ms. A has taught both Conner and Riley in first grade and a few summer school sessions so Conner is super familiar with her and absolutely loves her. She is offering to teach these ESY sessions during the summer. We are so grateful! She can then recognize his strengths and weakness for 4th grade. She is an extra special person and teacher. 

Thank you all who participated in the fundraiser at Pizza Ranch and to those who donated money. It raised almost $500!!! We are planning on buying a portion of a cow for our freezer with the extra money. 

Tomorrow, Conner and I leave for Madison, one day early in order to get a Covid test and results before his MRI on Friday (they need the Covid test administered and results back within 48 hours of procedures which is too tight of a turn-around for local hospitals/clinics). Since the Ronald McDonald house is still closed we'll be staying in a nearby hotel (whose pool is closed--big bummer to the kids). We'll arrive at 10:30 on Friday so that Conner can be prepped and ready to go for a Noon MRI. His MRIs take so long--around 3-3.5 hours--that we might consider staying at the hotel another night. On average I leave around 7pm with a very upset and tired little boy. Wish us luck and please pray for a clear scan. The worry and fear never go away and are only amplified when these tests come. We are all on edge, wondering if our world will again get shifted.

Journal entry by Amber Olszewski

Tomorrow, Monday, May 11 is Conner’s Pizza Ranch fundraiser. They’ve offered 10% on takeout and delivery orders all day! Please be sure to mention the fundraiser as I don’t think it applies if not mentioned when the order is placed.

Otherwise, we’ve been doing pretty well here. Conner still has nauseous days but lately we’ve had less for which we are so thankful. He and Riley have played nicely outside together. They have drawn “roadways” in chalk on the driveway and they drive up and down with bikes and scooters. I love their imagination! It makes all the difference when the weather is nice. Conner has SO many bumps and bruises from being active but I’m thankful he can be. As a Mom, I cringe when I hear the kids’ play ideas but I have to let them fly even if there’s a chance they may get hurt. Conner has so much play to make up after all he’s missed!

Virtual schooling has been an adjustment with both kids. It’s much more hands on. I have to talk Riley into me helping her. I know she wants the help but has a hard time expressing it with all that’s going on. Conner and I spend about 2 hours on school each school day (he also has an hour with his Homebound teacher three days a week). His moods are so unpredictable. It can sometimes take us most of the day. There are times when he breaks down, some where anger takes over. His therapist and I talk about it a lot and really try to help him label his emotions. He also thinks there’s more going on below the surface and with time we can understand more. 

We’ve resumed PT at the Aspirus Outpatient Clinic. He showed so much improvement since the last PT visit before the shutdown. He was much more stable when balancing and his energy level was up. I think he was happy to just get out of the house and do something as well. 

Conner’s next 3-month scan is scheduled for June 12, about a month away. With all his improvements I feel like scans will be clear but there’s always that dang flash of the unknown and the tightness in my chest returns when I think of the “what-ifs”. Staying busy for as long as I can keeps my mind off of it but as it approaches that becomes more difficult. Will that ever go away? I doubt it. Anyways, we’ll see all of his doctors on June 15 to go over any and all questions we may have after seeing the results.

Thank you all for your love and support. I know I don’t say it enough! Happy Mother’s Day to all you wonderful Moms out there, especially my Mom and mother-in-law, Mary.

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Journal entry by Amber Olszewski

HI All, 
What a crazy few weeks! We are all doing well here--no signs of any illness. We had a couple moments where we thought we would be going to the walk-in for Conner but have been lucky enough to stay away. Last week there was a day where he ran into the front door, causing him to cry a lot and throw up, and then later hit his head on the arm of the couch. Yesterday, we were all outside when I heard a crash halfway down the gravel part of the driveway. Conner had ridden his scooter there and fell hard on his right wrist. I thought it was a fracture right away since he wouldn't move his arm for the first hour or so. He, of course, is so sick of getting hurt that he just walks past us and goes to clean himself up in the house, alone. After questions and monitoring him we've decided he's ok. He can put pressure on it and has been using it all day. Phew!

We're very thankful Conner has no scheduled appointments until June (when he has his MRI in Madison). Hopefully we can stay away from Covid-19 as long as possible. Conner's immune system is strong but if he gets the illness it could be more serious--at least as far as the doctors know at this point.

School district home-schooling doesn't officially start until Monday but Conner's been able to start his Homebound one-on-one schooling this last Tuesday-Thursday for 1 hour each day. There was a technology learning curve for both his teacher and I but think we have it figured out. Conner was able to work on documents online through Google Drive and able to talk to his teacher through video chat. It's quite interesting. The teacher was reading to him the rest of a book they had started a few weeks back. I love listening in on the session. He's such a smart cookie.

Riley on the other hand is struggling with the home-schooling change. The other day Riley gave me a look and I said, "Riley, you look miserable." She said, "I am." We're hoping with school starting it will help bring back some normalcy in her life. As a family, we've been playing baseball in the yard, shooting hoops, art projects, cleaning/sorting, and today we made a mask for Riley out of an old T-shirt and the elastic from underwear. :) She's been searching online for easy ways we can make them every day this week. It turned out well.

Here and there, the kids have been working on some school items their teachers suggested. I cleaned out our craft closet and the kids found quite a few things to play with. There are so many areas in the house I want to clean and sort out. 

Timber is not sure what to make of us home all the time! He's loving the extra walks and playtime with the kids...until he's not. If he's tired he lets them know it. 

We are on Day 3 of exercising as a family. We use an app on our tv and all sweat it out together for 30 minutes. Conner was doing what he could and Riley kept up pretty well. Being a dancer she's not used to exercising like that.

Ed will be returning to work next week. I have mixed emotions about this. On one hand it will be nice to have one of us working (I won't be until restrictions are lifted on businesses), but on the other I don't want him getting sick or bringing it home for us--especially Conner. 

Hope you're all well and THANK YOU to all those who have sent well-wishes, gift cards, and groceries. What a crazy few years have been but we still have hope and are thankful for all we do have.

Journal entry by Amber Olszewski

Our Make-A-Wish trip has been cancelled out of concern for the Coronavirus. The kids will be crushed.

Anyone have an idea of where we can take the kids, last minute, to have fun and take their mind off missing our Disney trip (it will be rescheduled)? Preferably somewhere warmer and have some fun places to visit for an 11 and 9 year old. 

Journal entry by Amber Olszewski

Just got word that prayers have been answered! There is No Evidence of Disease (NED) in little Conner’s brain and spine. They found there was post-treatment radiation scar tissue that has formed but that, I guess, can be expected. We’re so relieved. I told Conner the good news, while I was dancing in front of him, and he said, “Yay! Do we have grapes?” :)

Conner’s back has really hurt today but we’re thinking it’s from laying flat on the hard MRI table for over 3 hours. Today, he slept from 10:30am-2pm and woke up rested and happy. We went for a bike ride/walk in town with Timber when he woke. We’ll definitely be talking with his doctors on Monday about the back/neck pain. He says he “just wants it gone!”

Journal entry by Amber Olszewski

Conner has just been taken back for his MRI. This is his 3-month scheduled MRI (he'll have one every 3 months this year). We arrived on time at 10:30am with an MRI time of Noon. Well, when the sedation doctor came in around 11am Conner got nauseous and threw up right in front of her. She said, "Well, this changes things." She said there was two options: either we postpone the MRI OR get Anesthesia involved to intubate and then sedate him. With clinic coming up on Monday and the fact we were already in Madison, we chose the latter. They were concerned with the chance of him throwing up during the MRI. If he was only sedated and threw up, he could aspirate (fluid going into the lungs) and that would be bad news. We discussed his health and if he had been sick lately. He's honestly pretty healthy--no fevers, coughs, or colds. He's just been more tired and nauseous lately in the mornings. Today, like the last few, he threw up right when he woke up. We've done better managing his bowel movements but has still been sick in the mornings the last week or two. He'll get up, sit on the couch for a bit and then head to the garbage can to throw up. After that he goes to the bathroom and is hungry for breakfast. I hate that it's become routine for him.  

He's been more tired and his neck has been hurting him. The worry seems to never go away--so glad he's getting scanned. We'll hopefully get answers tomorrow morning. 

The nurses and doctors were so caring. We are so thankful. As you know, Conner has experienced trauma recently when his G-tube fell out and had to have an IV put in during two different ED visits in one week. I asked the team if they could take this into account and somehow make the IV insertion less traumatic. They were able to give him a calming med and then laughing gas to take the edge off and it worked! He had an initial reaction but calmed quickly. 

I'm also thankful for Target. :) We got to Madison early and I felt like a small Lego set would help him through the day. We stopped and he picked one out. Sure enough, with the MRI starting 3 hours later than scheduled, the Lego was a life-saver! He almost built the whole thing (between watching cartoons, of course) before he went to MRI. I think God knew he was going to need it today. 

I'm not sure if we'll drive back tonight or stay at Ronald McDonald House. He does not do well waking up from anesthesia so we'll see. 

We have a fundraiser coming up on March 25 at Pizza Ranch from 4-8pm. I've attached the flyer with details.

Journal entry by Amber Olszewski

First off, thanks to those of you who sent us items off our wish list. I hope I got Thank Yous out to everyone, if not, THANK YOU!

Conner's been feeling ok lately. He has on and off headaches recently. His neck also hurts so they could be related. He's also been pretty tired, too. Yesterday was only a half day of school for him but he came home and curled up on the couch right away. We were able to motivate him to go to his Homebound (tutor) session in the afternoon but as soon as he returned home he fell asleep (for about 1.5 hours). The last few days he has thrown up each morning. The nausea has been less frequent in general with his bowel movements more managed (still working on it). Maybe he's not feeling 100%. No fever and no other complaints. Today he stayed home from school with a bad headache and he had no energy. He snuggled on the couch and slept from 9:30-11:30! Thankfully, he woke up happy and ready to go to Homebound this afternoon. Yay! It makes a huge difference when he can get enough sleep. He snuggled on my lap and let me kiss him all over. :)

We're getting ready for our Disney trip. Our Make-A-Wish reveal is this Saturday where we'll find out all the details they have planned for our trip! It's getting real! 20 days and counting!

Riley's been really excited for dance since she returned in January. I'm so relieved/happy she was able to overcome her fear/anxiety.

We met with our school care team yesterday to go over his progress and plans for the future. I'm so thankful for these wonderful people who care for Conner like their own. He's in such good hands. Conner has improved SO MUCH since October. His teacher showed us a test score of 14 from October, after taking the test now he scored a 31! He's still testing below average in a lot of things but for missing almost an entire YEAR of school, he's doing AMAZING. He tries so hard and REALLY wants to just be a normal kid and do the same things everyone else is doing. He is driven and is regaining his confidence. At his conference on Monday, we were all celebrating how far he's come and the look on his face was priceless. He had his chin up and his chest puffed out as proud as a peacock at his improvement. Wish you could all have seen it!

Journal entry by Amber Olszewski

So many emotions today—mostly happy but also anxious, sad, angry and worried. Today marks one year from diagnosis. We kept the kids home today to spend time together and make new, more happy, memories. It worked pretty well. We laughed, played and ate together all day. We thought back to this day last year while we ate ice cream for supper.

Right about now the doctor would have been pulling me out of the room and asking me if I knew the seriousness of the this and asking what all I knew: “It is a malignant tumor.” “He’ll need brain surgery ASAP, as in 4 am tomorrow morning, after his MRI.” “The surgery will take about 12 hours.” “He’s lucky he’s not disabled with how much fluid was in his ventricles.” “You and your family are in for a long road.” 

I remember when that last line sank in—I couldn’t comprehend it fully until we were in the hospital a few days, getting so much information thrown at us.  After I talked with the doctor I headed back into the room and looked at our son, who was so innocent.  He just went with what we told him, saying we need to be here to take away the pain in your head. That was enough for him. When Ed and I walked him down to surgery the next morning we felt broken already. He’s our sweet, chubby-cheeked baby boy who makes us laugh ALL the time. How can we let them do this...but he needs the surgery to live. 

I’m happy with where Conner is now with his recovery. It’s extremely slow progress but progress nonetheless. Looking back now I realize how long this road will be—his entire life. He’ll most likely have after-effects but we can only take each day as it comes! 

I’m really hoping that in the next few days we can continue to think positively and not get caught up in memories. Prayers and positivity please. 

Journal entry by Amber Olszewski

Day 11 in the PICU. Conner had a good night. He's currently sound asleep on his stomach which is more normal for him than always on his back. The cranial drain/port is still clamped which is great. His cranial pressure is a bit more elevated than Dr. Iskander (neurosurgeon) would like but being the weekend Conner can get rest and the doctor is confident it'll normalize soon--possibly be able to take the drain out Monday. Once that's taken out the IV could come out, too (it's been painful for him when his arm is bent). I imagine he'd remain in the PICU for another couple days after it's removed. He would then move on to a more general care children's unit. 

He continues to work on walking to and from the bathroom. Occupational therapy brought him legos the other day and he enjoyed putting some of those together. He has an NG tube in for feeding and medicines so it feels weird to eat normal food. Most kids don't eat with it in but he's been able to drink water and juices, and eat fruit--his favorite being Cuties mandarin oranges. He ate 3 last night! 

He continues to work through the steroid effects which make him have outbursts, no patience, sensitivity to pain and touch. To help we're trying to minimize providers in the room and stimulation.
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.

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