Day 36: T+36

Slow and steady progress is what we are seeing. His co2 level and kidneys are slowly improving.

His blood count numbers are on a slow downward trend that we are hoping turn around and start heading up soon. 

The days are all blending into one. But Eric's keeping up the good fight.  This is one quote that we both love. Knowing that we have a Heavenly Father who knows us, loves us and knows the struggles and feelings we are going through, changes everything. It changes everything and makes the hardest days easier to bear. 

Thank you for your support and love!

Jamie

Day 35: T+35

Eric's co3 numbers are headed in the right direction. They are down a little (45 to 42). 

Today his ciclosporin (the anti rejection medicine) level was measured and came out high. It's in the 600 range when the goal is to be down closer to 300. To help remedy this they are stopping the ciclosporin level tonight and tomorrow morning. Then they will recheck the level. The good news about the ciclosporin level is that now we know his body is capable of absorbing his medications. That's good news, because Eric has had problems with malabsorption in the past. Now just to get it in the correct range. 

Also still high is his Kidney function tests. But that number can run high as a side effect to the ciclosporin. Add that the ciclosporin is level is really high and that directly affects the kidney function. The hope is as the ciclosporin level lowers to the normal range it will also help the kidneys to recover. 

Eric's still endeavoring to try and eat, even amidst everything tasting bad and not having much of an appetite. Today he tried white rice:

And cherry yogart:

Way to do hard things, Eric! He's doing his part, and hope that his body does it's part! I love you, Eric!

Jamie

Day 34: T+34

Thursday is not the day to go home. 

His co2 level was high (45) again today and he is feeling the groggy feeling coming back. After talking to Dr. Pearl, the pulminologist, we all thought it best to not go home tomorrow. Dr. Pearl is raising the dose of diamox for Eric to help his body to lower his co2. Pray that this can happen and Eric can feel better. 

This process requires so much patience. I think patience is something I'm being taught over and over in life. Just when I think I've learned how to be patient, I find out that I haven't.  Here's to patience!

Eric:

Thanks for hanging out with me everyday, boy!! You are doing so well with all the challenges put on your path. I love you and will continue to be by your side!

Jamie

Day 33: T+33

Thursday's looking like the day. The day to be discharged and go home. I can't believe we've made it to the going home part. I remember those days and weeks before Eric got admitted being so scared. So scared of all the unknowns in this journey. Scared to think that those days could be my last with him at home. But we've made it over one of the hurdles. One of the many along the way. I can't help but feel so grateful for the success to this point. That Eric's body was able to endure this hard treatment. 

I feared that he would spend some time in the ICU. I mentally prepared myself for all the possibilities. I continue to stay realistic that scary days could be in the future. But that doesn't change how happy I am that he has made it this far without too much that we can't deal with. 

So home he will come! We want to continue to give our thanks for all the kind words and support of each one of you. You have brightened our days and helped us along this path. Thanks for keeping us in your thoughts and prayers. We know that it's through your faith and our faith combined that we make it day to day, and sometimes hour to hour. 

Eric had a pretty good day today. He got out on five walks but was also able get some good nappers in. (And well as myself)

He even felt good enough to play a game on his phone for a few minutes:

Day 32: T+32

Showered by 2! That's a first. Well at least for the last four weeks. Eric's showers slowly got later and later in the day. But as soon as I got here (after going to the dentist to fill a cavity, boo!) he was all ready for a shower!

Eric had worked hard, and so after the shower he got:

In preparation of going home Eric has had all but three medications moved to oral (one is only given once a week) and is now IV pole free!

And can walk freely:

Today's concern is that his neutrophil count dropped down to 700. The doctors assure us it's a concern but nothing to be too worried about. Eric will receive another neupogen shot to help boost his neutrophils and help them on a steady course upward. Pray that his neutrophils stop playing games and start a steady course upward!

I have to also say how excited I was for this today: 

A close parking spot!!! I finally had parking karma (or carma in this situation) and got the fourth parking spot in! Only took 36 days, but it was well worth the wait. 😀

Day 31: T+31

Sundays are a sleepy day. Eric revieves his IVIG midday and gets Benedryl as a premedication. Then it's off to sleepy land!

The concern of the day is Eric kidneys. There are two levels they monitor, the BUN and creatinine. The concern was with the rising BUN number as well as the extra fluid Eric has, mainly in his hands and feet. The BMT doctors weren't sure if it was something to be concerned with so they spoke with a kidney specialist.  The kidney specialist came and spoke with us and said the kidneys look normal (normal for all they are going through). He said the rising BUN isn't a concern because it is most likely caused by the ciclosporin (the anti rejection medicine). There was one last test he wanted to run to make sure, but he highly doubted it would turn out positive. 

The BMT doctors are helping us make the steps to go home. Dr. Peterson went over the list of medications Eric will go home on, and switched everything he could to oral (starting tomorrow). Eric's warming up to the possibility of going home. It's a scary step. 

Sundays are a quiet day ya the hospital. It was nice to have some quiet time as well as a good nap myself.  We are good little nappers!

Day 30: T+30

Eric receives things from you that make him laugh. May I share one that you will enjoy too. 

Eric rockin the red turtle neck! Handsome even back then. 

No new news to report today. They did another ultrasound to check out the blood flow through the spleen. Some labs were also drawn to test for his liver function. The liver tests will take a while to get the results from so it's a patient waiting game. 

Things are going along as best as they can. More medicine has been switched to oral, and they are watching how his body absorbs the ciclosporin (one of the anti rejection medicines).  

His blood count numbers have been fluctuating up and down but have been staying high enough to not worry the doctors.  We hope to see them go back up tomorrow as they've been on a downward motion a few days. 

Thanks for the continued support. We appreciate all the ways you show us you love us, even during your busy lives. Eric's getting a little stronger everyday and we couldn't be prouder of the hard work he's putting in! Not to mention he's putting up with all of us who love to hang out with him everyday!

Jamie 

Day 29: T+29

The results from the ultra sound and chest X-ray show that he has gallstones in his Gallbladder and an enlarged spleen. Neither are good things to hear, but they also aren't life threatening. The doctors don't quite know what the exact cause of the problem could be. There also looks like there is something happening with the lining of his lungs. We will wait for all the different doctors to talk together and decide. 

Eric is also working on introducing eating food back into the mix of things. For the last four weeks he has relied fully on his TPN for his nutrition. But the doctors think that the bone marrow transplant could help his gut and possibly make it so he could absorb more of what he eats. That would make it possible for

him to have less or no TPN in the future. He's had a cracker and strawberry jello. He's starting slow and easy, just as he should. 

Love this man of mine!

Jamie

Day 28: T+28

Officially engrafted!!!!

The doctors said today that Eric's bone marrow has officially engrafted. His numbers didn't fall too much from yesterday.

Platlets: 41 (up from 38)

Neutrophils: 3000 (up from 2300)

White: 3.8 (up from 2.8)

Eric had a rough night because he had pain that he described to be in his ribs and shoulder. They gave him some pain medication to help make him more comfortable. An ultrasound and chest 

X-ray were done (late in the day) to investigate the cause of the pain.  We will find out results tomorrow as well as the doctors opinion. 

Other highlights of he day: 

Fingernail clipping! His fingernails have grown so fast! 

And helping his body heal with some much needed resting!

We love you Eric!! You are all our inspiration to be better and do better. Keep up the 'fun' times and it will be worth it!

Jamie

 

Day 27:T+27

Eric's numbers didn't fall too much today:

Hermatocrit: 28.3 (about the same)

Platelets: 38 (up one from yesterday)

Neutrophils: 2300 (down from 2900)

White: 2800 (down from 3600)

The numbers were expected to fall today, and perhaps a few days. Hopefully not too far down. 

The doctors have also been discussing sending Eric home. They said it could be as early as Friday, but it's all up to Eric and what he feels comfortable with. It will most likely be early next week instead of Friday. Many of his medications are slowly being moved over to oral instead of IV. One important drug, ciloaporin (an anti-rejection medicine), is half oral half IV starting today through Friday to see if Eric can absorb it. (Eric has malabsorption.) A level will be taken on Friday to see how Eric's body does absorbing it. 

On the home front, we are deep cleaning the entire house to rid it of any mold, dust and any other groddiness! The air duct man came yesterday morning. 

After I got home from the hospital, my mom organized what needed to be done and I rounded up the people and a deep clean of the house happened. Thanks again to all the wiling people who gave of their time and energy to help make the house clean and ready for my boy to come home! It smelt like lavender heaven by the end of it! (And why didn't I take pictures of my amazing friends?!? Sorry...)

One step closer! He still has a long journey ahead of him, even when he comes home. Coming home doesn't mean it's all done, in fact it's just the beginning.  The doctors say it takes a whole year to be out of the woods of any worries. Eric's been making great progress this week and looking and walking stronger everyday! It's really fun to see the small improvements each day. Slow and steady is what we are about!

Jamie 

Day 26: T+26

Eric's alert again! He feels alert and we can tell he is more alert. Still tired, but alert and as he described it: "I could take a math quiz and do decently on it." One step in the right direction.

In other news the small neupogen shot he got yesterday did what it was supposed to. It boosted his neutrophils from 400 to 2900 and his white blood count from 800 to 3600. That's more of a blast! Dr. Asch said that his body is making the neutrophils and white blood cells, and the neupogen just pushed it out of the factory. Now to see what it does tomorrow. It most likely will fall, but we are hoping that it doesn't fall too far. 

His Hermatocrit and platelets dropped a little, but not too far to need infusions. 

It was a day full of many doctors and staff. We saw the GI doctor who is monitoring Eric's distension in his belly. The dietician came by and said they are going to start monitoring his calorie counts and encouraged him to try eating. 

Still moving in the right direction! Continue the race, Eric!

Eric and his new shirt!

Jamie 

Day 25: T+25

Eric's numbers stayed around the same today. His red blood count dropped below 26 so he received a red blood cell infusion. The doctors decided to give him a low dose of neopogen. The neopogen

is expected to jumpstart his counts. Pray that it helps like they think it will!

Eric got a surprise visit from his brother and donor, Jordan, today. Jordan had to come up to the clinic so we got Eric out on a walk for a 'surprise visitor.' Eric really enjoyed getting to see Jordan today!

Lastly, I keep forgetting an exciting thing: Kim (Eric's dad) started tweeting about Eric a few days ago. Check out his tweets at Lotoja60 

Day 24: T+24

Four weeks! It's crazy to think he's been in this battle four whole weeks. Go Eric! 

Today his blood counts dropped a little bit:

Neutrophils: 400 (down from 500)

White: 0.8 (down from 0.9)

Platelets: 39 (also down)

Hermatocrit (red blood count): 25.2 (also down)

The falling of his counts are normal to see. Because his platlets and Hermatocrit have dropped below the levels they are infusing him with both. 

That's all for today, accept some more selfies with my boy!

We are here for you, Eric! We will keep working and fighting hard for you. I love you!

Jamie

Day 23: T+23

They did a generator test early this morning and all air went off in the room, making the room like a sauna! (It thinks the room is 30 degrees so it's pumping out heat nonstop!) It is a holiday weekend and the company who can fix the problem is closed on weekends. So we have moved rooms. It's musical rooms around here! (Which is especially hard on Eric. Well and me. I really liked his new room!)

But just because we move rooms doesn't mean we stop the fun activities:

Sometimes the respiratory therapist can't do the chest percussion on Eric for many various reasons. That's when we come in! Vicki's still the best at it, though. :)

His neutrophils went up to 500, and platelets dropped. So he had another platlet infusion today. 

Other than that, not much has changed. He still is exhausted. His mean wife still gets him up out of bed to go walking, do his breathing treatments, take his medicine, and all the other non fun and non sleeping activities one must do. This is a long road we are on but a long road that's worth it! He's dealing with so many hard things and I am amazed at all he's doing!

Rewards come his way all day:

Backscratches are one of the things I can do that help take his mind off of some of the bad things. Who doesn't love a good backscratch? 

Eric wanted to let everyone know how much he appreciates and enjoys all the text messages, emails, calls, cards, and comments on the blog! When I read them to him everyday it really makes him feel good to know so many people are thinking and praying about him and for him.  As you know, Eric is feeling really exhausted, tired and his body suffers from too many annoyances to name. We ask that if you have questions on Eric's health status you refer to the blog or call Jamie, Vicki, or Kim. Eric doesn't have the strength to respond to text messages right now and needs to focus his energy on the things he needs to do everyday. Please keep texting him words of encouragement, funny videos, and other things that will help make his days so much better! Know that he gets each text and really appreciates them. Thank you for understanding. He loves each one of you so much for caring, loving and supporting him. A big thanks from me too for all you do, nothing you do goes unnoticed!

Jamie 

Day 22: T+22 Valentine's Day!

Happy Valentine's Day! I walked in this morning to find Eric's door all decked out for Valentines by cute Vicki! 

Eric's numbers have continued to rise. Today they are:

White count: 0.9

Neutrophils: 400 (only 100 away from official engraftment!)

Platelets: 43

And he is feeling a smidgen better today.

I was mean wife and made him go for a walk right when I got here. Dr. Pearl came in again last night and emphasized the importance of getting up and going on walks. I'm so proud of Eric because yesterday he did 4 walks! 

Before Vicki left this morning she got some pictures of me and my valentine:

Try one:

Now try that with your eyes open, Eric:

Boom! He's still got it. I ❤️ my Batman!

I've got the best valentine around. He takes me on walking dates everyday!

Day 21: T+21

More good news this morning! Here's what his numbers look like:

Blood counts:

White blood count: 0.6 (up from 0.2)

Neutrophils: 200 (up from 100)

Platelets: 47 (down a little bit, but not as much as they have been dropping. That means his body may be producing platlets now)

His belerubin and co2 are back in normal range too. 

Engraftment is just around the corner! They call engraftment when the neutrophil count is 500 and stays there for a few days (but hopefully the neutrophil count will just continue to rise).

I also keep forgetting to mention that starting back on day 18 Eric's hair started to fall out. It has continued to fall out everyday. After talking to the nurse, it's common to lose your hair about day 18. We thought he had dodged that bullet. Good thing we have lots of good beanie options for his head to stay warm!

Eric said he feels a little better today. Although his numbers are going up, it will still take a good amount of time to help him feel back to what he called his hospital normal, or what he felt like a week ago. Although still challenging, a week ago was a lot easier than it has been the past 3-4 days. 

Best of all though, is that it looks like his bone marrow is on the mend and will help his body feel a little better everyday. Keep praying for Eric to have the strength to do the things he needs to do. Also pray for his lungs, and that he can begin to breath easier and not to feel short of breath. 

We love you, Eric! You are going through the very hardest experiences. Stay strong and know that we love you and your Heavenly Father loves you. We are all cheering you on!

Post shower sleep:

Jamie

Day 20: T+20

Wahoooooo!!!!!!

I may or may not have thrown a party at my house this morning when I got a text from Vicki that said: 

".....Platelets at 49 and we have neutros 100!!"

No. Way. Really?!?

His neutrophils have been hanging out at zero for SoOo long. So long. And that's what they are supposed to do. That's how the BMT goes. And you're just waiting for the zero to turn to something other than a stinkn Zero. 

We are on the path to engraftment. The doctor said it may or may not be a sign of engraftment, but it could be. 

Other good news is that his co2 levels are down from yesterday (56 to 33). Co2 levels should be anywhere from 19-30. He's getting close to being in the normal range. He looked better when I came today than he did yesterday. By his report, he feels the same as yesterday. 

We got Eric some easier foot attire for the hospital. Check out these beautiful guys:

Yeah for good news!

Jamie 

Day 19: T+19

Groggy. 

And foggy. 

That's a better description of his tired feeling for the past few days. It's like when he tries to wake up he can never get out of groggy land. 

One doctor from the pulmonology team came up and saw Eric this afternoon. They saw an elevated amount of co2 in Eric's blood, most likely caused by the lasixs (the diuretic) he's been on for a while to help with the edema (the build up of fluid and swelling of your body). To help fix this they are lowering the dose of lasixs and adding a medicine called diamox. Diamox will help reduce the co2 levels in his blood which will hopefully help him breath easier as well as not be so groggy and foggy. 

Eric is such a trooper! To watch someone you love go through something this intense is so so hard. I would never change this chance to help him get through this because you get to know them on a whole new level. Eric continues to impress and amaze me. Let's keep cheering him along!

Eric, all the hard things your experiencing will be worth it. I know it will! You're doing a great job doing your part. We will continue to pray and work and watch the miracles continue to happen like they have every day. 

You are a miracle and you are my miracle! I still love you a whole lot!

And his late night walk:

Jamie

Day 18: T+18

Last night went much better than the two previous nights. Thank goodness! Eric even asked Vicki part way through the night if anyone had even come in. People had come in at least 10 times Vicki said. So either the nurse and aid were really good at being quiet or his sleeping medicine did an excellent job. Or both! I say both. 

And while I'm thinking about it, let me just say how amazing the staff is in the BMT unit here! I've been impressed with all the staff. 

It's another sleepy day here in Eric's room. He feels EVEN more tired than before, if that's even possible! Getting out of bed is super hard. His body needs a lot of rest to keep up with all it's going through. He's a good little sleeper! 

The day consists of sleep, get up and work really hard, sleep, get up work really hard, sleep, get up and work really REALLY hard! You get the idea. Eric is one tough man! He is so inspiring to me. If he can do hard things all day, then I can do hard things too!

During his sleep fest today he's receiving more platelets. This time they are HLA matched platelets because the doctors are hoping his body will hang on to more of them better than he has. The doctors are still trying to get his platlets up to 50. This morning they were 35 for the morning lab draw. 

Sleepy selfies:

Way to work hard through another day!

Jamie 

Day 17: T+17

There's nothing worse than repeating a bad thing over again.  Unfortunately last night was a repeat of the night before with him coughing up blood.  They treated it similarly and eventually he coughed up less blood and it wasn't bright red. 

Eric is receiving more platelets today to keep him in a safe range just incase he coughs up bright red blood again. They are running the platelets in over 8 hours instead of the 1-2 hours like they usually do. It's a fine balancing act to make sure he doesn't receive too much fluid and create worse edema (too much fluid on his body which creates swelling). He has been getting a diuretic daily, which has now increased to twice daily. This helps keep a balance of fluid with his body. He's best friends with the bathroom now!

Speaking of the bathroom, we were offered a different room today. It's bigger, especially the bathroom. It has two big windows and only has one neighbor, so maybe it'll be extra quiet. 

Old room:

New room!

Lastly, if you live in salt lake, who heard or saw the fire about 5th east and 5th south last night? We saw it from the hospital on Eric's nightly walk and it looked really bad! Want to talk about scary! 

We sure love you, Eric! 

Jamie 

Day 16: T+16

Eric's lungs gave us a scare last night. 

Everyday while doing his breathing treatments he coughs up secretions from his lungs to help clear them and make it easier to breath. Last night when he did this there was bright red blood that came up. This has happened at home to Eric, and while it's been concerning in the past, it's even more so now. With his blood count levels down, especially his platlets, it really scares him and us! Platelets are part of your blood, and help you clot and also prevents bruising. 

The on call pulmonologist was called and she recommended a different medication for his breathing treatment. He did this, and then over time the bright red blood slowed down.  They also upped his platelets and instead of a platlet peramiter of 20 they increased it to 50 to be safe. So you can imagine the amount of time it takes to infuse enough platelets to increase it to 50. Practically all night. 

As you can imagine, he had a not so restful night. Every bag of platelets they infuse they have to check your vital signs (blood pressure, temperature, oxegyen/heart rate). Vitals are taken every 15 minutes to start, and then after you are stable for 30 minutes they do it every half hour. Nothing like sleeping with interruptions that often. Eric did take the sleeping medication that had helped the night before but only took half a dose. He was worried about his lungs and what could happen if he slept too deeply. 

A long night.

Although a terrible night, Eric made the most of his day and pushed through the hard things he had to do.  He really does a terrific job at doing all the things he doesn't like without complaining. 

One day closer, Eric! You've got this!

Jamie 

Day 15: T+15

FINALLY.  

Finally Eric got a good night sleep! Halleljeuh! He now can face the day with some amount of energy. Last night Eric tried a new sleeping medicine that did the trick. Here's to two nights with a restful sleep. 

The day is the same as others. Breathing treatments, walking, spirometer, hanging out with Jamie and all the other fun things.  He received more red blood cells and platelets because his counts were low again (totally normal and to be expected).

A pretty view of the capital I get driving to the hospital everyday.  It's the second best view everyday. The first is Eric's smile! Keep smiling Eric, you are running a great race! 

Jamie

Day 14: T+14

Valentines day is not forgotten at the BMT unit at the hospital. Here's proof:

And:

To also get us in the mood for valentines day Eric gets to plump his blood up with some more platelets today. 

It's been another day Eric's been tired but joyful. He really is a joy to spend the day with. I even joined him in an afternoon nap. I couldn't let him have all the fun!

I still love you a whole lot, Eric!

Jamie

Day 13: T+13

Dr. Pearl is a pulminologist. 

Dr. Pearl is fabulous. 

Dr. Pearl is one of our favorite doctors. More importantly he's one of Eric's favorite doctors. The power to reassure and calm Eric lies within Dr. Pearl. 

Eric's top 3 reasons Dr. Pearl is the best:

1. He is uniquely specialized for very sick people with lung disease and knows how to treat them. 

2. He comes highly recommended and Eric has confidence that he knows his stuff. 

3. His dry sense of humor. 

Oh, and he likes to be invisible. Or so he tells us. 

I'll have to post a picture of the two of them later, I haven't remembered to get one yet. 

And because I can't ever get enough of sleeping Eric:

Eric endured another hard day with flying colors! 

Jamie

Day 12: T+12

It's hard to see someone going through something so hard and not be able to do anything to change it or take it away. 

Eric's body is being taken to every limit. He gets little to no relief from the challenges he faces. 

Continue to pray for him. Pray that his new bone marrow can engraft quickly. That he can have some moments of peace and calm. That he can have the strength to endure one more day. 

It's inspiring to watch Eric work hard to do the things he needs to although it is hard. He doesn't have to be pushed or prodded to do things.  

Thanks for your love and support! This is a long journey and we appreciate your help along the way. 

Another quote from the quote wall I love so much:

Eric, you've done an excellent job so far! You've come so far in this journey, and I know you can keep going one hour and one day at a time! We are here to help support and love you!

Jamie

Day 11: T+11

Our days together at the hospital have been hard ones for Eric. He yearns so badly to feel better, less tired and whole again. There is nothing I want more for him than those very things! 

That being said, we can't change our challenges in life, only our reactions to them. We get to choose what our actions will be. Eric's always been an example of making the best out of the stinky things that come along in his life. It's one of the MANY reasons why he's loved by everyone in his life (all of you!). 

So here we are. Hanging out at the hospital everyday. I come in the morning and leave in the early evening most days. You would think I'ad get sick of it. Not true, it's quite the opposite. I L❤️VE my time up here with Eric.  It feels like we get a second go around with dating. I wake up in the morning so excited to get ready and head to the hospital to see Eric. Leaving at the end of the day is the hardest thing, even though I know I'll be back tomorrow. Life's just more fun with Eric in it. 

Our hours together are ones I love. Helping Eric out and spending time with him are the best. Among all the hard stuff we have a good time and often Eric's flashing his fabulous smile, laughing, singing, and making me laugh! Everyday I'm reminded of the many reasons I married him and why I love him so much. 

Here's to making the best out of what we have been given in life.

Eric's platelets were low again today, so he received more platelets to help them stay above the level they need them to be at. Other than that, it's another day being utterly exhausted but working hard anyway. I love you, Eric! Keep pushing through these hard days!

Jamie

Day 10: T+10

Double digits!!! We've reached day 10 on the post transplant count. Ten days since transplant, boom. 

We welcome day 10 with a blood infusion and platelet infusion. Both of those counts have dropped below where they like to keep it (totally expected and normal). 

His counts are low and he feels even worse than he has.  So you know what that means, sleeper sleep sleeping away! It's really quite an enjoyable thing to watch Eric sleep. :)

Nothing else new to say, and I'd like to keep it that way.  Keep the progress going forward! Just working hard one day at a time. 

(The platelets!)

Jamie

Day 9: T+9

Naptime. Uninterrupted Naptime. It's something we take for granted. We've been figuring out the schedule and slowly day by day figuring out when is best to take a nap. 

Day 9 we orchestrated the perfect nap. For two hours in the afternoon we had a doctor, nurse practitioner, nurse, cna free room. Eric zonked out for the whole two hours. 

Simply amazing. 

The gorilla sleeper. One of my favorite ways Eric sleeps. 

Other than that Eric's truckin along and not acquiring any more side effects! Pray that his good progress continues!

Jamie