Amelia's Kidney Journey

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Author: Justin

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Stumbling into the new year

I wrote the last post about how fast things have been going, but then, don’t you know, it has been over a month since we have written. The Christmas season was a lightning blur, even with so many activities cancelled or postponed due to the raging COVID monster. We didn’t get to go to the festival of trees this year, but we did get to watch it on the computer. A bit different, but still cool that they could have the fundraiser still.

Well, we had Christmas and everything went really well. Amelia had some hiccups with her medicines and the timing of them. We had switched one of her meds from the afternoon to the morning trying to get a good reading on the labs. The problem showed up pretty quickly. This medicine makes her shaky and not feel very good. She wasn’t able to eat much, and was nauseated along with the shaking during the day. She was getting miserable, so we switched her med back to the afternoon. With that she is doing much better, having those symptoms during the night when she is sleeping, more or less.

She is able to eat better and is feeling better. I ask her every day how she is, and she usually says, “Crummy.” I told her that she should call that her normal and let us know if she is worse or feeling better. I only keep praying that she will be feeling better soon.

We had a fun New Year’s Eve, celebrating with homeade sushi and seafood, that Amelia actually ate. We call that a win.

She has been doing good with school, but is glad that this semester is over. She is looking forward to getting started on some new classes. We also found out that Amelia will be in one of the first classes of 9th graders to attend high school. She will be going to her 9th grade year at Taylorsville High School. She was both excited and nervous about that when she went to the orientation. Lucky for her, Leatha and Cameron have been going there for a few years and the school itself isn’t so intimidating.

Earlier this week, we had another kidney clinic, and wonder of wonders, it was virtual. I didn’t get to attend, but it went faster than ever before. We did find out that her labs are doing better in some respects, but worse in others. He kidney function is definitely going down though. We keep hoping that a new kidney will be coming soon to take care of that.

Again I would like to thank everyone who reads this blog and keeps Amelia in their thoughts and prayers. I am a big believer in the power of group faith and prayer. It is the reason that we still have Amelia with us, and the reason that she has done so well over these past 11 1/2 years of her transplant. Thank you to all of you.

I was also remembering back to that virtual Festival of Trees at the first of December, and a couple of things that Alex Boye said in his final remarks that have stayed with me all season. He said that he had looked up contagious in the dictionary and saw that it meant the transmission of something from one person to another. While we all have the COVID beast in mind, he also said that there are things in this world that are even more contagious; Love, Peace, Harmony, Joy and Good Tiding of Good Will. He was talking about the feelings of Christmas, but those are exactly the things that Jesus Christ embodies, and what I hope we can all spread around this country.

This weekend we had our stake conference. During the Saturday night session, they had a slideshow of some of the things that our stake did for others during the pandemic. From yard cleanup, to the harvest festival, to the coat drive, to the bike drive, these were all things making the community better. I find that seeing that kind of service and love in the face of this pandemic inspirational.

Carrying on and taking care of others, and just living with odds and circumstances against you forces you to find another way to look at things, and brings hope. Hope is always there if we can find it. I hope to be able to always find that hope.

Alex Boye also said that he mother used to tell him to always find the gift in every struggle, find the peace and good. We try to do that with all of the trials that we have and especially with Amelia. I know there is a far reaching reason for Amelia to have this kidney failure.

I don’t know what it is yet, but it will enlighten someone in the future. For myself and Brenda, I feel that our trial with Amelia is not only teaching us things, but through all of this, we will be able to help someone else understand what their child is going through, and help them. I don’t know when that is going to happen, but I hope that our experience will support and help them to find the gift in the struggle.

Thanks again for reading this.

Still coming to you live, now 208 days into this new kidney journey,

-Justin

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January 17, 2021
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feelings

In the Blink of an Eye

Boy it seems like only a few days since I last wrote a post for this site, but when I looked, it has been almost a month! I guess there is some catching up to do.

November went really fast. I mean really fast. So fast that you could miss it if you blink too long. Amelia had an orthodontist appointment and a dentist appointment on the same day!

She has been doing ok over the last month. Her appetite is better and she seems to feel better, even if it is only a little bit. We have been running around some, trying to get things ready for Christmas crafts and she has been riding along. We even took a mini road trip out to the west desert after Thanksgiving and she had a good time on the ride.

For Thanksgiving, she was a great help again. She made the candied yams, helped with the rolls and snack table, and made crustless pumpkin pie. They all turned out great. She even tried her hand at making fudge. It turned into a fudge flavored syrup, but it tasted right! She wants to practice that again.

She did have a clinic visit this past week, that was basically uneventful, but they did say some of her blood levels were looking better so that helps. We just have to hang on and wait for that kidney to come, hopefully before she needs dialysis. Last clinic they started talking about dialysis, but they didn’t say anything this time about it.

For now, we are in a holding pattern, just hoping that Amelia can keep feeling as good as she can. We are looking forward to Christmas though, we are trying to make it as normal as we can staying at home. Good thing a bunch of our Christmas activities are home related anyway.

I hope you all have a very Merry Christmas Holiday, and a Happy New Year. More to come as we know it.

Still coming to you live 167 days into the new Kidney Journey in the Year of the Covid…

-Justin

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December 7, 2020
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feelings

3 Tumultuous Weeks

It has been quite a whirlwind of 3 weeks since my last post. What was going to be simple with a kidney clinic visit and then Halloween, turned all upside down when Amelia’s grandma passed away. We had a lot to do with that but we still managed to pull off our Halloween celebration.

It was not quite the same for Halloween, with all of the COVID Beast’s doing, but the kids still managed to get some Trick or Treating in, and they got to wear their costumes. We stayed home a lot and watch a whole potload of Halloween movies this year. We also decorated our house more than we have for a few years. We got out the big spider web and all of the blow up characters along with the reaper. He is always there. We also made some fun signs and blocked off the stairway so the kids couldn’t come to the door to trick or treat. We made a slide from PVC pipe that went the length of our handrail and delivered candy to the kids at the bottom. Our signs directed the kids to howl like a werewolf, or cackle like a witch to get candy. Leatha had great fun listening to kids come again and again and do different things for candy.

We also made it to a corn maze as a family. We had fun going around the maze and the kids liked the slides and stuff there. Amelia was able to walk around quite a bit. She went with Leatha and made it all the way to the top of the corn maze and back. She did really well.

On Friday before Halloween we went for a drive up over the Nebo loop just to decompress after Grandmas funeral. It was nice just to drive in the mountains. We stopped and roasted hot dogs for dinner and just had a good time being outside and together.

We did finally have kidney clinic on the 3rd after much argument with them. We are still having issues with getting things communicated in a clear manner. They scared Amelia with talks of dialysis and getting ready for that, much of which is unnecessary at this time. We are working all of this out with her new medication changes and her generally downhill direction. She hasn’t been feeling well overall. Not sick per say, but just feeling crummy and having less energy. They are working on her medications and adjusting them now.

Amelia is still on the transplant list, and still waiting. We will see what comes next and keep trying to keep her as normal as possible.

Still coming to you live, 139 days into the new kidney journey

-Justin

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November 8, 2020
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Activities

Alive in a Whirlwind…

I can’t believe that as I sit here, there are only 13 days left until Halloween! October is more than half over and over here has been crazy.

Amelia has been doing ok, but going downhill. We can see it even if she can’t. Her appetite has gotten to the point where we are begging her to eat something so that she can be healthy, but she struggles. We keep trying different things hoping that something will taste good to her. Sometimes we score the home run and she chows down, sometimes it takes a while to finish.

Some of her kidney labs have been all over the place lately. The doctors are trying to figure out the best therapy for her, but we are not near the point of dialysis yet. They plan on talking more about that at clinic on Tuesday the 20th. I really hope that we can avoid dialysis…that was a chore before and will be again.

On another note, they were encouraged last week when her name actually showed up on the list for an available kidney. She was far down, like number 13 on the list, but she was still there, so we keep our fingers crossed. All things will be in the time that they are supposed to.

School has been going well, all of the kids are nearing the end of the term. This term at home has had its ups and downs, but we have most of it finally figured out. We will be on to the next term starting on the 26th.

We have tried to get Amelia out a bit this month, we have gone on some drives and hanging out in the mountains away from everyone. We are still keeping her pretty isolated. She is keeping busy reading and baking. She is becoming a darn good baker. She made cupcakes the other day from scratch, with cream cheese icing, and then spent a lot of time making individual spiders and flies out of fondant. They looked really good. I told her that she will have to be on that show she likes, Nailed It. She could win.

In general, we are just hanging out and waiting for a kidney to show up and for the Covid-Beast to be vanquished. We will make this. We are all continually grateful for all of the prayers and thoughts from all of you out there. We could not do this without your support and the support from Heaven. We will always be grateful for the power of combined faith and the blessings that can be received from it.

Thank you all again.

Still coming to you live, 118 days into this new kidney journey in the year of Corona,

-Justin

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October 18, 2020
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Activities

September is almost over!

Well Hello there! It has been a little bit since my last post, not too much is going on in the kidney world, but life is a bit crazy.

Since August, everyone has gone back to school! Amelia is at home, doing all of her classes online and doing really well. Last night we had virtual parent teacher conferences and she is doing great! This Covid mess has one bright spot, and that is the ability that the teachers have to do online schooling. This is ideal for Amelia becasue she can be in a “normal” class and learn a ton. Home Hospital was fine last year, and got her through the basic classes for 7th grade, but this year she gets art and music, all online. She has gone in a couple of times to pick up things from her teachers, but for the most part she is at home. She did make it for school pictures this year and didn’t have to head up to Primary’s afterwards. Last year, she took her first picture and went to the hospital. That picture wasn’t great as you can imagine, so we did retakes, with the same result. This year she just came home afterwards!

We have been running around like crazy this month and it just seems to slip away like quicksilver. I can’t believe it is already the 23rd of September and it is officially fall, but it is already to week 3 of the NFL season. No, the Broncos are not doing great.

Amelia had clinic (with all of the “covid” crap restrictions) on the 15th and she is doing ok. She has been getting more tired lately and doesn’t feel great, but she still gets up and goes. They finally got all of the i’s dotted and T’s crossed for her to be officilly listed on the transplant list. We thought she was on the list before, but it was all preliminary waiting on OK from the GI docs and the oncology docs. All is good now, and we begin the actual waiting.

Amelia has been keeping herself busy learning needlepoint and continuing to bake. She made a pumpkin roll the other day that just may rival Grandma’s, and that is hard to live up to! We also let her and Leatha get a new cat. She loves the cat as you will see from her post. She is also interested in learning photography. I have let her use my camera for a few things lately and she is doing pretty good with compositions and lighting. I made her the official photographer for Cameron’s Eagle Scout Project last week, and she came home with nearly 900 images. We will have plenty to choose from!

All in all things are going well. We will wait for a kidney call and continue to hope that she doesn’t get any sicker. Brenda and I (and amelia) are continually thankful for all of you who are supporting us. We appreciate your thoughts and prayers, we can’t do this without your support and that from Heaven.

Still coming to you live 93 days into this kidney journey,

-Justin

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September 23, 2020
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Activities

The one about Amelia’s Second Campout

Yes you read that right, I have taken Amelia on 2 campouts now, and she is a trooper. She loves to be out camping. She goes and goes, and gets tired easy, but she will rest and head right back out!

She had a great time running around and taking pictures of her potato with Tristan. She also had a great time beating me handily at Uno. Yea, I ended up drawing 24 cards in one round….

She was also very good at helping to get things ready for dinner, saw wood, and then clean up. I think she likes to just be outside where there is not much thinking about her health. It is good for her to breathe some of that mountain air and watch the fire dance. And apparently there is some mystical medication encased in marshmallows…she is diligently searching for that, just like Charlie searching for that golden ticket.

If only there were marshmallows that would grow a new kidney. It is fun to watch her teach Tristan how to camp and do some of the camp chores.

Still coming to you live, 44 days into the new kidney journey

-Justin

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August 5, 2020
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feelings

The one about the last pre-transplant class

Today we met with the pharmacist for our last Pre-Transplant class. She gave Amelia a bunch of information, and was really nice to talk directly to Amelia for the appointment. Since Amelia is the one taking all of these, she needs to know!

I really like when the doctors talk to Amelia, not at Brenda and I and hope Amelia gets it. Now, when she was younger, and for the first transplant, Amelia didn’t understand any of this. Now that she is 14, it is great to get her prepared for the future when she will be living with this transplant on her own.

Amelia wants the cat to help….

I wonder how she is processing all of this, learning what Brenda and I have been doing with her for years, and wondering how she is going to handle all of it. Of course we will be there to help, but it is a bit daunting. I took over setting up all of Amelia’s meds years ago when we almost gave her 2 doses and Brenda and I determined that 1 person in charge was a good idea. Amelia helps me now, to load her pill box and keep track of what she is taking every dose.

Hopefully after this appointment, she will continue to be aware of all of the things she has to do. I also hope that there is not a hiccup that will keep her off of the transplant list for another month.

At the end of this appointment, the pharmacist asked Amelia for a bright thought to get her through the rest of the day. That is just fun and it is great that they are involving Amelia so much in this transplant process.

More to come as we know…

Coming to you live 35 days into the new Kidney Journey…

-Justin

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July 22, 2020
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feelings

The one about the workups, Day 2

Well we are sitting here in the clinic at Primary Childrens hospital today. This is the day when we get to see the transplant people….that we know. as of 1030, we have seen the coordinator and signed a bunch of papers to get ready for transplant, the child life specialist who just chats and tries to figure out how to get the kids more comfortable in the hospital.

Then we saw the doctor. We have been seeing Dr. Sherbotie since Amelia first got sick 13 years ago. He is still puzzling about Amelia. There is a lot of unknowns about this new transplant and what will happen with it, and they kind of have to wait and see. He is talking about situations where they may have to remove her current transplant, or go on dialysis for a while, and then what immunosuppression that she will be on. He was also talking about consulting with Dr. Afify, the oncologist, to make sure that the immune suppression Amelia will be on works for her new transplant and will help avoid getting PTLD again. He is very optimistic about this second transplant.

Everyone keeps talking about finding Amelia a live donor for this kidney. That is hard for me to ask anyone to donate when they won’t work me up for it. Amelia can have both of my kidneys today if they would do it, but they will not. For now.

So now we have to ask if anyone would be willing to get worked up for a kidney donation. It is interesting what they do now, people can come in and get worked up for Amelia, but if they don’t match then they can still donate to someone else and things get matched up for Amelia. This is similar to what Carol did back for the first transplant, where she donated to Amelia. Carol’s uncle, that she didn’t match, got another persons donation soon afterwards. Now they can do chains of people where there may be 4 or 5 in a line between people. So now I have to post here, if anyone wants to get worked up to be a donor, go to the University of Utah’s page: https://healthcare.utah.edu/transplant/living-donor/

Now we are waiting for the rest of the team to come in. We are waiting for the dietitian, pharmacist and social worker. More to come about those.

Dietician: not much is going to change! She was glad that we have been doing good with eating and drinking for the past 11 years. Amelia will do just fine after transplant.

Next up was the social worker. She needed to know how we were going to handle another transplant and what Amelia could use for support. According to Amelia, it comes down to parents, siblings, and the cat. In reverse order.

Anyway, that was our day at clinic. We are hoping to get her on the transplant list soon, hopefully before she has to do dialysis again.

Still coming to you live, 30 days into the new Kidney Journey

-Justin

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July 17, 2020
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Parent's Blog

The one about the workups, Day 1

Well the time is here. This is our first set of appointments towards getting Amelia on the transplant list again. Today we will meet the team (again. Not like we haven’t known them for 13 years now) and they will educate us on the transplant process. This is a requirement for her to be considered for the transplant list. I will be adding to this post as we have the appointments. Luckily, they are all teledoc appointments over the internet and we can stay home for them. More to come on these as we go!

12:00 pm Ok, we have finished the first hour and a half of our clinic appointment. There was a lost of information about transplant and the basics. I can remember doing this the first time, but Amelia doesn’t remember this so it is new and overwhelming for her. This has been a good refresher for me, some things I didn’t remember. I just have to say, Wow. I can’t believe that this is here again. Now we are on with the dietitian. More updates to come!

1:00 PM a lot of information from the dietitian, most of which we have been doing pretty well with over the years. a couple of new recommendations, and some things that we needed a refresher on. Going onto the doctor now!

2:45 PM ok just got finished with a TON of information from the doctor. That was a huge bit and Amelia is very intimidated by it. Some interesting things with COVID, they don’t have much data for the effects on transplant, but we have to be very careful with Amelia. If she has a positive test or contact with people that can be suspected of having COVID, she may not be able to have a transplant. They will not accept a donor that has had COVID. In light of this, our family quarantine just got a bit tighter, down to changing clothes after shopping or going to work. We just can’t take chances with this stuff and having that affect Amelia. Looks like we will be seeing most people over the internet! Our next appointment is at 4 with the transplant surgeon. More with that then!

4:15 PM Well that was a quick visit with the suregeons. We talked with the Physician’s Assistant because the main surgeon was in surgery! We will meet him later for sure. Amelia got a bit of information about what to expect for the surgery.

All of this is a bit much for Amelia to process and it is going to take her a bit to get all of it figured out. She is writing a post right now about it, that should be fun.

Tomorrow we will be up at Primary Childrens most of the day for more evaluation. Hopefully, there will not be anything that will bar her from the transplant list, we don’t expect there to be.

Coming to you live 29 days into this new kidney journey,

-Justin

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July 15, 2020
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feelings

We are Officially Starting

July 7, 2020. This is the date that we received the letter officially inviting us to the transplant evaluation. This starts the process that will include labs, meetings with the surgeons and transplant team (many of whom we have worked with for years) and evaluations.

If she is determined to be a good candidate (again) there is a board that meets near the first of each month to discuss putting the child on the national transplant list.

This is wild for us. Before it was almost a foregone conclusion that she would get a transplant and be on the list. I don’t remember all of this process from before, but it must have happened, it just may not have been set up the same back then. It scares me just a little that there is a chance (all down to a vote) that Amelia may not be on the list. Granted that chance is smaller than a gnat’s eyeball, but still.

The whole notion that she needs more surgery and a new kidney is a lot to wrap my head around. I am nervous that this will draw out as long as it did before, and end up with her in dialysis for 2 years. At least we are not starting from an unknown, with a baby. Amelia is bigger and strong, it should be easier for her, but it is not easier for me as a parent to have this going through my brain.

We will continue to pray and hope for the best, right now it is all we can do.

Coming to you live 25 days into the new kidney journey,

-Justin

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July 12, 2020
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