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February
7
2019

Hurdles

For the most part, our dad's journey has been filled with hope and has gone fairly smoothly. Bone marrow transplants are one big mix of bad and good, and we've been so thankful for the good. Dad's body took to Sandi's cells like a champ, that's the best part. That continues to be true, according to the lab work so far. But lately, he hasn't been feeling well, has difficulty with fatigue and a lack of appetite, and just seems somewhat "off" in how he feels. Thankfully he has an appointment with his Mayo clinic doctor today. He also has called to report the changes and had a med change that we hoped would improve his appetite, etc. So far it hadn't really turned around, so we'll see what happens with lab work today, and the conversation with the doctor. 

The last month was extra hard for recovery because dad's mom became ill and went on hospice. She was gone in a matter of days. This wasn't entirely unexpected, but it was of course terribly sad. Saying goodbye to a mother is never an easy thing. This meant many days without rest, a funeral and grief. 

Our parents also celebrated their 50th wedding anniversary, so with the help of some friends, my sister and I tried to pull off a party. I say "tried" because we invited people via Facebook and in the church bulletin, but this ended up leaving out a lot of folks that aren't on Facebook and/or don't go to our parent's church. This is my way of saying I'm sorry if you weren't aware of the party! Many people have told us they wish they would have known, so of course we feel guilty that they didn't hear about it. It was open to everyone, of course, but there's no going back in time. Shoot.
Hindsight of course made it look obvious that we could have put in the paper or something, to reach more folks. Our heads aren't entirely clear these days. 

Please send your faithful thoughts and prayers to dad, for energy and appetite once again. The way he feels may be a sign of graft versus host disease so we'll be sure they are checking that today in Rochester. 

All the best, 

Heather

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December
7
2018

An overdue update

It's been far too long. Life keeps throwing curve balls our way and it keeps me away from things like CaringBridge. It's also true that no news is good news! 

I never want to downplay what my dad is going through, but he really is doing quite well for a man who went through a bone marrow transplant just a few short months ago. (Or long months, depending on who you are.) The outcome of the transplant has been FANTASTIC. Dad's body has completely taken on Sandi's cells with gusto. His doctor is SO pleased and impressed and happy. So are we. This means he is in full remission. That's the goal, where's his trophy?! :) 

Overall, everything has gone so well. But of course, this kind of trauma to the body is long-lasting in many ways. It will take a very long time for dad to feel like he's better. His body has been through an absolutely life-changing thing. He will feel weak and tired for a long time. He will be trying to reach a healthy weight for a long time. His mind and spirit will be working on awakening for a long time. But that said, he's strong and full of courage. He's never once said he wanted to give up. He's here with us and we are forever grateful and in awe. 

Here is a recent photo with his two sisters, Shari and Sandi. Grandma insisted this be taken so she can put the photo by the chair in her nursing home room. She has gotten to see her son and it was a beautiful thing to bear witness to. Sometimes it seems like she has been sticking around to see this thing through with him. I'm pretty certain that's true. My grandma, dad's mom, is a warrior. A fighter. She is frail now and her health is failing. Spending time with her is one of my dad's focuses these days. It's so fantastic that they have this chance. 

Thank you again for all of the love and support. 

Heather

October
17
2018

70 and Shiny

Dad has continued to do better and better. It's not easy, but he's doing it! Each day he focuses on eating and drinking enough and getting exercise. Yesterday mom and dad were told they may even get to go HOME for a couple of days this weekend. The doctor will check in with them on Thursday to see if dad is doing well enough to make the trip. It would be great for them to be able to get a dose of home, so here's to hoping! 

Dad's number (regarding his stem cells) continue to prove that Sandi's cells are being accepted and things are going really well in that regard. He did have some nausea for a couple of days again, but after tweaking a medication, it seems he's back on track! That's good, because he turned 70 on October 12th, and got to have a visit from Shelly and Dave and their son (grandson) Max! (My-Heather-family and I could not come due to sickness-that would not be a good present.) 

I'm sharing a recent picture of the birthday boy. Shiny head and all! He's looking pretty good if you ask me. :)

We are all so grateful for the improvements and for all the love and support. Thank you! 

Heather

October
7
2018

You're the best

My dad has always written "you're the best" in cards and notes to us. He has always helped us to believe that he sees us this way. That we really are the best, in his eyes. Of course I feel this way about my own children, and I write those three words in notes to my dad sometimes, too. And we are so lucky, because we have so many people in our lives that have surrounded us to walk through this transplant thing with us. With him. And if he could write a note to all of you, I know what it would say... 

"You're the best!" (and it would say thank you, of course, for all of these days of prayers and love and support and cards and gifts)...

Time is weird. Dad had his transplant on August 10th. It's October 6th. How can something be so fast-slow? (These are rhetorical questions, meaning you don't have to try to answer them. That would be too hard.) 

I was talking to a friend that had a terrible car accident in July, about the way that people say he's amazing for coming so far SO FAST. At the beginning, after he was airlifted to Minneapolis and in the ICU, no one knew if he would make it. He had terrible injuries and at first couldn't walk, had many fractures zig-zagging his noggin and much more. Now he is back home with his family, driving and attending events, sharing that big smile with all of us. He's a miracle. And he knows that, but at the same time, this whole thing--to him--has felt terribly slow. He has been the one living inside that fractured body, re-learning so many things, trying, trying, trying every single second of every day. If I'm doing the math correctly, it's been about 80 days.
Or 1920 hours.
Or 115,200 minutes. 

There has been pain and agony much of that time. There has been striving, all of that time. And I imagine if I had to strive, deal with pain, confusion and fatigue, for one thousand nine hundred twenty hours straight, I might not think it's gone all that fast. 

But here's the thing. Both of these people--my friend Matt and my dad--are still here and they are still going. People who are recovering from horrible things like freak accidents or cancer, are living minute by minute a whole lot of the time and they are some of the truest heroes. The power of the human spirit is amazing to me. The ability we have to rise up to incredible challenges and to say, "OH no, I'm not giving up..." is mind-blowing. 

I say this now because my dad is doing so much better. And I suppose these are the days when we could push too much or expect more or breathe a sigh of relief and consider it all over with, for the most part. But it's a long, long road, for the person living all of those striving seconds, one by one while time flies by like usual for the rest of us. 

This is when the worst of the climb is over but you just haven't reached the top of the mountain. Where everything slows down and everyone moves on around you, zipping here and there, and you're still just not quite...YOU. 

You're not quite there. 

You could give up, but you won't, because you're you, and you're the best. 

At an appointment a couple days ago, dad found out he had gained FIVE WHOLE POUNDS. He's gone from consistently losing weight daily for around 65 (or more) days, to gaining five pounds in a week. The nausea has stayed away for a longer string of days than it has this whole time. It seems the current medication mix is just right. There is so much relief, and he's still striving, each day, each hour, each second.

My dad has always has been and always will be a hero to me, now I just have even more reason to say so. No matter how long it takes or how he changes after going through this, I will think he's the best. 

Thank you, 

Heather

October
2
2018

Could it be...

Every day dad is getting just a little bit stronger. A little hungrier. A little more himself. Today we got on FaceTime together, which hasn't been possible up until now. Shelly is there with mom and dad and she says that he is like a new person since the last time she was there. We are pretty thrilled about this, obviously. And of course, we continue to hold our breath a little. Especially because dad has a cold right now, which is obviously not good for someone on immuno-suppresants.

So far, he hasn't had a fever as a result of the virus. That's the biggest current worry. So he's being watched closely, as usual. 

Suddenly it's October, so we're hoping for just one more month (about) in Rochester, before our parents get to come home. Shelly's boy Max has a goal for Nanny and Papa--to get home in time for the play he is in in early November. They would love to be there, so let's all keep hoping! 

Sometimes this whole experience feels like a really really long dream. I'm just saying. 

Thank you for listening and walking along with us. Could it be that we have truly turned the corner? 

Heather

September
28
2018

Back on track...

Dad was released from the hospital today and is back at the apartment with mom and Sandi. This is great news, and we're hoping along with him that he will continue to feel better. He's been able to eat and drink more and keep hydrated. He says eating makes all the difference. I agree. :) 

The cycle has been that things fall apart with dehydration increasing nausea and then nausea therefore increasing dehydration. Here's to hoping we dad gets to be done with that cycle. He sounds more hopeful than he has in a long time, and we are all so grateful. 

Thank you for your continued thoughts and prayers. 

Heather

September
25
2018

The vicious cycle...

Dad is still in the hospital as of today--Tuesday. He will for sure be there through tonight, and possibly another night if he doesn't continue to improve tonight and tomorrow. We are all happy to know that he's perking up a bit with all the fluids via IV, and has gotten back to eating a little bit. We also all know (all his caregivers) is that we have been through this several times. Dad will improve with help and then become unable to keep up with fluids and food outpatient, until he's so weak we have to bring him back in. This is not because he just isn't trying hard enough. It isn't because he's got something stuck in his mind about eating/nausea. 

It's because for over forty days now, all of his resources have been entirely depleted, and we've learned that he is someone that needs more fluids to stay hydrated than the average person. He would drink all the time if he could, but he's still so weak and frail, it's hard to keep the nausea at bay. 

Trying a feeding tube has been discussed and we have decided that we will give this one more shot outpatient, striving to increase the fluid intake and if dad ends up in the same place with dehydration and nausea, we will request a feeding tube to get him enough strength for his body to fight a little harder for more time. Right now even if he gets just a little dehydrated or had a couple of appointments that wear him out, he gets totally setback. 

His spirits were up a little bit this morning, Auntie Kay said. He was back to cracking jokes. This is always a good sign. Both Shelly and I have still been trying to totally kick the sickness away before heading back to Rochester. It's that time of the year--school germs! 

Once again, I need to take a moment to say THANK YOU all for your comments, notes, texts, calls and donations for expenses for our family. I have loved being able to give Sandi and Shelly money for gas and other expenses, and that's because of your generosity. I've also had a huge weight lifted personally with friends and family offering gift cards and cash to help me while I'm away from work often and traveling as well. Financial stress isn't something we need right now and those of you that have given have made an absolutely HUGE difference for all of us. THANK YOU. 

(Photo from a little over a year ago, when both mom and dad went skydiving!)

Peace to you and yours, 

Heather

September
23
2018

Another turn...

Dad is back in the hospital today. He had a good day and a half or so, and then hit another turn for the worse. He had "graduated" from his frequent daily outpatient visits to Station 9-4, the bone marrow transplant hospital area. But now he is inpatient. He became nauseous and dizzy and got dehydrated again. He had stomach reactions to food and meds and couldn't keep things in. So Sandi and mom took him into the hospital for fluids last night. Then this morning he was still the same, weak and dizzy, nauseous...so we called and the hospital staff said to bring him in. 

It's the weekend, so more will be discovered (hopefully) tomorrow about what is going on. It could be that his graft vs host disease has worsened, causing the increase in nausea, weakness and dizziness and stomach issues. 

Both Shelly and I have been sick this weekend, so we could not leave home. It's a very helpless feeling. Our Auntie Kay (mom's sister) is on her way to Rochester now to be with mom. Sandi went home to take care of her kiddos and a few things and plans to return in a couple days. We are all scared and worried, honestly. Graft vs Host can be treated, but sometimes it can be very stubborn and dangerous. Please hope with us that whatever is knocking dad back after such a good turnaround can be found and dealt with. We feel terrible for him, he's just too weak and thin, exhausted and confused about what's happening. He needs loads of peace and comfort sent his way. 

Thank you,

Heather