This is the journey we are on, and and long as we have to do these hard things and go down this road, we might as try and find joy in it along the way. Look for it where we can find it, because it is always there. God will provide us with the strength, courage, and anything else we might need along the way. -Mama (Jenna)
If you have something you would like to send, here is our address!
Conner Young
N51722 Condensery Rd
Osseo WI 54758
715-533-5092
Hey
Friends and Family
I want to tell everyone how grateful I am for all the people who reached out to me. And also an apology if all you got back was a heart emoji. Seriously I was a zombie those first few days especially. Brandon, Conner, and I. We were all fried. Thinking of us at a time like this was so appreciated.
Between all the gifts, money for good food, and gas, Brandon and I realized how
very lucky we truly are. The friends and family we have showed up for us. Our
village is big, beautiful, and far reaching. It brings me to tears (seriously, I still cry actual tears) just
thinking about all the wonderful things Conner received, and all the love and
kindness we were shown. I cannot stress enough, the thoughtfulness we were
shown, even just the money for a coffee, was just amazing.
We did a lot of Doordashing and Uber Eats for the
couple weeks we were in Rochester and the money we received relieved the strain
on us. We ourselves didn’t do too much driving as Conner wanted us in the room
with him. However, the gift cards for gas for our loved ones coming down, even
if it was just to visit Brandon and I, was great. Gas is expensive, and it is a
bit of a drive. We anticipate a lot of driving back and forth for quite some
time. The money we received will continue to help us with travel expenses for
all his appointments.
I will try to post on Facebook as much as I can and you
can keep up with Conner's journey on my on here! Thank you
again for your kindness
And now. How is Conner doing?
HE IS DOING SO WELL ITS ALMOST A LITTLE SURREAL. Like? Was that a bad dream or what? Then I see the scar on his little bald head. And I think I still need to heal from the emotional strain of it all, right along with his stiches.
Conner, opening up some things that the Tractor store uncle Josh works at gave him. This is the afternoon we got home, and just one of the many things that Conner came home to!
All together playing with them!
Time for a hug for daddy. Happy tears to all be together. It was so hard being apart. Brandon might look like a big bear, but he lives for his babies. Best daddy ever.
Breakfast Saturday Morning at Chickadees. Favorite place to go. After being gone so long, it really makes us appreciate our favorite places more!
TIME FOR A HAIR CUT!!
THANK YOU SO MUCH GRANDMA LISA AMIDON! WE LOVE YOU!
His brothers all got a shave to. They look so handsome!!!
Truly, Conner is doing really well. He wears his cap, and if you didn't know his story so far you would never guess. Its so wonderful.
Here is some of what's been going on, what the plan is, and where we go from here.......
Dr. Schwartz is Conner's Oncologist. Which basically means Chemo doctor I think. Brandon and I have been given the nasty job of deciding weather to do the tried and true or go with a trial treatment for Conner. It is so hard. We choose between a port that goes into his blood stream and chemo is injected, or Chemo pills which is a trail, and may or may not work. We are literally having to pick his poison. It makes me so scared. What is the right one? We are getting together with a bunch of family to help decide, because it is going to be a team/village effort. Seriously we need all the help we can get.
A letter and an answer- My questions/writing is in bold.
Hello,
This is one of Dr. Schwartz nurses, I can answer some of you questions. However some of these are best for Dr. Schwartz to discuss.
- What if we decide to do nothing? No pills or Chemo? We would not recommend no treatment at this time, the tumor will continue to grow, this could results in deficits and harder to treat down the road.
-Will Conner be able to play sports eventually? Yes, many patients go on to continue or participate in sports, there are certain sports that we would recommend to avoid, ex.,football,
-Do we know where this tumor came from?(Discuss w/ Dr. Schwartz next visit)
-How long do we get to decide what to do? Dr. Schwartz wants to start treatment 4 weeks post surgery), so next week.
Some notes from me (Mom) although we still haven't made a decision. Just typing up some thoughts that are rolling around my brain.
-Conner says he wants to take pills.
-Feeling scared that the easy treatment (pills) is the wrong treatment just because it would be less driving. Like we would choose it just for convivence? Does that make it wrong?
-If I am going to put my kid through hell, then I want to make sure he goes through that and gets better. Not that he is just suffering from it and doesn't get better. No guarantee on the pills?
The IV chemo(carbo/vcr) is fairly well tolerated, it does require more of commitment due to having to come weekly, I know this can be daunting, however do find many family and patients get in a routine, it is 4 weeks on 2 weeks off) I think Dr. Schwartz preference would be Carbo/VCR rather than oral Selumetinib but would be best to discuss that further with him.
I'm hoping someone from our desk has been in contact with you on appointments for next week. Currently we have Conner scheduled for in person visits with Dr. Schwartz and Pediatric Surgery next Wednesday 2/22. If plan is to proceed with Carbo/VCR we would place the central line on Thursday 2/23 and admit to the hospital for first chemotherapy. If you still have a lot of questions I wonder if maybe on Tuesday 2/21 we could schedule a phone/video visit w/ Dr. Schwartz so a treatment plan can be finalized before Wednesday. Thoughts on visit Tuesday?
Happy to discuss any of this on the phone too,
Thanks
Dena RN
Found a before and after of when Dr. Daniels went in. Pretty wild to look at!
PLEASE LET ME KNOW IF YOU HAVE ANY QUESTIONS FOR ME, AND QUESTIONS I COULD BE ASKING THE DOCTOR!
Here is my venmo again, Thank you so much for reading.
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