Journal entry by Amanda Korhonen —
Multiple Myeloma Mayo Experience Updates & Current Story:
4/21
Every day at a time. Tom is getting very excited to finally go home! He's optimistic about being able to go back to work towards the end of May. Help us in praying that he can go back to work and start leading a normal life again! The traveling back and forth, the absence of him at home, the anticipation of results and health status has been quite an adventure. 5 more days!
Tom update: Labs look good today. We have 7 appointments on Monday to see how this is working and Tuesday his line is removed and hopefully we are coming home!!!
4/17
Coming home without my husband is so so hard hard but today is the last time I do that! 9 days Tom Korhonen and you’ll be home with us again. I’m so excited this is all nearing the end. Some days have felt like years.
4/15
Tom’s appointment went good today. They said his lab results are “stellar”. As long as things continue to go well, 11 more days until he can come home!
4/14
Well we decided to change hotels today. We NEEDED a different environment. Yes the walls were closing in on us and we were getting a little crabby. It took forever to pack like moving out of an apartment. Oofda. And we forgot our milk! Our housekeeper was so nice to us so I stripped all bedding and did my best to clean up as much as possible.
We are now at Aspen Suites and impressed. Finally a hot tub that’s open and free breakfast and evening appetizers. A change in environment is exactly what we needed. Now we have more territory to explore in our new neighborhood. And a separate bedroom!
Our new mini apartment. We just found out laundry is free too. Nice. I’m taking all my laundry home clean. . It’s nice to have a separate bedroom so we can break from each other. Lol
4/13
We just finished a good movie at an IMAX theatre. It was Miya’s first experience with IMAX and I’m pretty sure she liked it. Ambulance is a really good movie full of action almost all the way through!
Tom’s doing good. He was nauseous last night for awhile but better today. No fevers or neurotoxicity so good.
We have our next appointment on Friday to see how his labs are progressing.
Have a good night!!
Jean Korhonen there is a recliner for sleeping if you want to visit your baby boy. Tom said it’s comfortable.
4/10
Tom Korhonen is at his appointment today with my mother. This is my moms first experience at the Mayo. Pray for Tom. Lol. I’m sure it’ll be fun for the both of them.
The family leaving Rochester from their visit. This all is so hard.
4/9
Day 13: Toms doctors appointment went good this am. All his labs look good. He had no fevers and he thinks he’s still mentally stable. Thinks. Lol.
My parents came down with Kassie this am with a grocery store. My mother. It was quite the load. The girls are making chicken dumpling soup tomorrow and goulash cause potatoe, beef barley and chili soup so not enough.
Good times with the family today. We took Miya and spoiled her for making the honor roll. She now has her ears pierced again and didn’t cry this time around.
4/8
Day 12: Tom had a good night and still in the hospital. He just found out they are letting him out today! Now we can do something fun today.
4/8
So excited to be with Tom and out and about just a little and he’s wearing his mask! Temp was good before we left and the nurses told me to watch for any unusual behavior. We still have to be careful of Neurological stuff. I laughed and said he’s always unusual and weird all the time. They laugh and are so awesome.
Miya is worried about spending all this close time with us and keeps shaking her head lol.
My parents and Kasandra Jean Korhonen are coming tomorrow morning and of course my mom made beef barley soup, potatoe soup and chili for us. Lol and wants to make goulash . We will not starve for sure.
4/6
Day 10: Tom is still teeter tottering a slight fever and appetite but doing good. He may be released tomorrow. Miya and I are going up and will be with him until we take him home. We need this TomAss home.
4/5
Day 9: Tom is finally doing better but borderline temp so they are watching him close. His appetite is back and Cameron Korhonen drove up to be with him which makes me so unbelievably happy and thankful!
These past two days were very difficult with not having Tom with Kassie on her birthday and him spiking fevers. Ugh. I’m so happy and relieved he’s doing better and continue to pray he keeps recovering to a million bucks again!
Another big spike of protein cells which is a very good sign this is working.
4/4
Day 8 update: Tom spiked a fever twice today and got the chills. He has a spike in protein which we are told is a sign the cells are working to kill cancer. He shortly got flu like symptoms after this am. This is why they wanted him in the hospital and could be a really good sign. Just pray he doesn’t have to be sick very long. He doesn’t want to have to stay in the hospital longer.
I’m praying this is all over for him tomorrow and he feels like a million bucks again.
4/2
They offer iPads for patients so Tom Korhonen now can watch his hockey. Miya Korhonen got it all set up for her dad. Yeah it’s not on cable channels and don’t get Tom going on that.
From Tom:
Food here isn’t too shabby for hospital food
Just dial er up and it’s served Amanda Korhonen Philippi take notes
Day 6: Tom is still doing really awesome!! He feels good and eating like a pig! He’s going to miss being treated like a king when this is over. No side effects and lab tests look good! His butt swab is even good. Lol. I am surprised.
He had some specialist doctors in this am making him feel very positive. They are happy with his results and very optimistic. This could be a really good sign for the study with newly diagnosed patients. They think this could be why he’s doing so well with the procedure! This could be such great results for so many people! Tom asked if he continues to do well, could he go back to work in May. They said that’s their goal! The prayers are working grandma and everyone, keep them coming!!
4/1
Day 5: This guy with his old man glasses lol says “Im going to tell them I feel like a million bucks and don’t need to be checked into no hospital”. I said good luck with that dork and I hope you didn’t jinx yourself.
Appointment is at 1:30 and then he’ll be checked into the Mayo hospital for 5 days. I may try to talk them into checking him in the mental ward instead. . Don’t you think kids? Lol
Tom’s all checked in!! The rooms are really spacious and nice. I even have a nice office chair. Lol. Reclinable. I may have to mention to the boss. Ha ha. The nurse downstairs came to get us and had a wheelchair for Tom and Tom said I’ll walk if thats ok. He wanted nothing to do with that wheelchair.
3/31
Day 4: Tom’s appointment went well today. His test results are awesome so they took him off one pill because of it. I’m now again in Rochester slumming with my hubby. Worked 10 hours and then drove for 3. Long day but it goes fast. Tom met me at the door to unload and I kindly asked him to park our truck. I like the truck but it’s sooo big and scares me in parking ramps. Lol. I knew he probably missed his truck anyways . Wow you fill that pig up and you hear cha ching, cha ching, cha ching. And then while cruising down the highway even over the music, you here that tune as well! That’s enough gas prices. Cut us a break!
Tomorrow we check Tom Korhonen into the hospital for 5 days. Days 5-10 is when side effects usually happen so please continue to pray for his well being AND that his super T-cells are working hard and attacking and killing his cancer cells.
Ugh exhausted but my Superman husband was mad that he can’t watch the Wild game in the hotel so guess what. We are out and about watching the wild game. Lol. I said I better be able to play etabs then and bam, sold. Lol. Time to win big on some etabs. Lol.
3/30
Day 3: Tom’s check up appointment this am was about the same. All good. I think he’s having fun with just the boys in Rochester. Zach, Cameron, Mike and Ken are all staying with Tom and I’m sure they are having fun playing poker. I got to come home and get back in the office and it felt so great. And I got to see my Miya and dogs! Oh Jean too .
3/29
Day 2: Well we are at our first check up appointment after T-cell infusion. Tom’s feeling really good and super excited that he can poop again. Lol. I just had to share with everyone because he shares with me! . Sharing is caring! He’s eating good and feeling good. I think he’s excited because our boys are coming to visit tonight which means I get to go home for a couple days. They have poker chips with so I’m sure they’ll have fun.
3/28
Today is the day we’ve waited so long to get here! So far labs look awesome and we are a go for infusion. They are thinking around 11 am and it takes just 15 minutes. Then it’s a waiting game with close monitoring. I’m so happy we got this far! There are so many approvals needed with passing labs and we got them! We are feeling so blessed to be invited for something so big, it’s hope!!
We just got the go to start infusion at 10 am now! We are ahead of schedule. Woo hoo!
Infusion is done! Nurses were joking with each other saying don’t screw this up it’s billions of dollars. Yikes! We even had an audience peaking in the door window! So far Tom’s doing good. The Benadryl is kicking his ass but other then that, he’s doing good!! Now it’s just the waiting game. Vitals checked every 15 minutes for an hour. Then hourly for 3 hours.
3/27
I’m so glad my parents came and visited us in Rochester. I never thought we’d ever have to experience this in our lives and it’s so hard to process. You just feel numb.
Tomorrow is the day that basically marks the rest of our lives together. We are so greatful to be a part of something that gives hope to so many families. I’m so confident we are going to find some peace in our lives again tomorrow and this is going to work. We have weddings and grand babies in our future and Tom has to be apart of all this! I refuse to tackle that circus alone.
Please pray for our family! 7 am tomorrow we start and they figure about 10 hours of monitoring. It’s going to be a long day.
3/26
Todays appointment was short and sweet. Labs look awesome! One more appointment tomorrow before infusion date and then we need all the prayers we can get. These re-engineered cells need to attack the cancer cells!!
Upcoming events: Next week is going to be a tough one. Infusion takes maybe 15 minutes but there’s a lot of prep work and labs. It’ll be tough cause it’s such a waiting game. Tom will be monitored after infusion every 15 minutes for four hours. Then he can check out for outpatient until Day 5.
Day 5-10 is the timeframe that side effects, if they happen, will happen. He’ll be inpatient for these 5 days. I’m praying so hard he doesn’t get any! Day 11, he can check out for outpatient again with close monitoring until Day 14.
Then we wait until Day 30 when he can check out of Rochester and come home!
Onward on with confidence that he will beat this and come home the day before his birthday!! I keep hearing from doctors and nurses how successful this treatment is. I pray so hard we get our lives back soon and boy are we going to live it!
We got some visitors today! Visitors definitely are nice to have for some normalcy. It can be very depressing alone and not even going outside. We have tunnel access to the clinic which is very convenient but you can forget there is life outside all this stuff.
FYI Red solo cup has only Dr Pepper in it. With the Car-T study there is absolutely no alcohol.
3/25
Last day of chemo before the big day. Tom is feeling super photogenic this morning. Lab results are awesome and so far the only side effect is feeling tired. One day down means another day closer to coming home!!
Tom Korhonen took a nap after chemo and jumped up and ready to roll. We decided to get out for awhile for some dinner. Date night! He’s quite the Superman and never stops amazing me of how strong he is.
Our new apartment for awhile. It’s a little run down with maintenance needs but it’s like a little apartment with a full kitchen. We have lots of room.
3/24
Day 2 of Chemo ramming up for the big day on Monday. So far Tom has no side affects from the chemo and the nurses said that’s a really good sign. He may not get sick at all!
3/23
Update for Tom Korhonen:
Monday- a day full of appointments but labs and scans are all really good. The procedure is a go and we start Monday. Tom is the first patient to start this process for the study so it’s been a lot of ups and downs with changes as they figure it out. Since he’s the first patient, they are requiring him to be in the hospital for 10 days.
Tuesday- small surgery with putting lines in for easier access for blood draws, chemo injections, and cell injection. They said IVs would damage some of his cells. We don’t want that!! They are coming back as super cells!
Wed-Friday- 2 doses of chemo a day
Sat-Sun - check up appointments
Mon- Wed 4/6 - re-engineered cells injected and in-patient hospital for observation.
Change again! Lol! Now Tom is not inpatient hospital for two weeks. Just day 5-10 so he’s getting admitted on Friday, April 1 - ha it’s April fools day through April 6th. .
3/20
Well we are packing up and we were scared this weekend. My hubby and I got really sick Friday but feeling better today. Tom and I dont want anymore delays to get this cancer behind us.
I have my girls going with us Monday and Tuesday and excited to spend time with them even through these circumstances. If there is one thing we do best it’s making the best out of anything.
It’s nice doing laundry when you just throw it in a suit case. Soooo much easier and Tom is keeping his in a laundry basket cause we’ll need one anyways. Woo hoo. Landry almost done!
I took a luggage suitcase and started filling with groceries of some of the comfort stuff you want from home. What is that! Help me with ideas. Lol. I just started with seasonings, snacks, canned veggies (no jars they’ll break), onions…..
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