Aron's HSCT journey

21/02/2025

January 23 is usually a day that goes by without much fanfare, but at our house it is a very important day. It is a day that gave us hope for seeing Aron have a normal life. A life that he could continue to live at home unassisted with his family, a life that he could continue to work and be productive, a life of being able to participate.
January 23, 2025 marked 2 years since Aron had HSCT, the stem cell transplant that thus far, has been successful. To say the last two years have been easy would be a lie. Most of the first year we stayed on guard all the time trying to keep him from being exposed to things that could make him sick. His body was weak from the intensity of HSCT. The immune system he had spent his life building through exposure and vaccinations had been wiped out, so he was pretty vulnerable in every way. I know I don’t fully understand how he was impacted by the isolation he experienced that year. He’s always been such a trooper and never wanted me or the girls to miss out on anything just because he couldn’t go. So, for months while life carried on around him he pretty much stayed at the house.
After a while he gradually started spending more time at the business we had spent the previous 8 years building. He jumped back in with a renewed focus and commitment. The last year has been a time of tremendous growth, evolving direction, and opportunity. This has been exhausting and consuming for Aron, but it’s incredible to see. What he is able to do at work today would not have been possible for the last five years. His creative energy has returned, and he has renewed mental clarity that the MS had robbed him of. That along with our incredible staff and partnerships have helped push the business in exciting new directions that allow us to move forward in spite of the challenges life has thrown our way.
Life isn’t all about work though, there have been other significant improvements. It’s been a long time since we’ve done much “going out”, but what we do enjoy is being involved in our kids' active lives. Aron was able to be on the field with the other parents when Anna was on homecoming court, he has been able to be at dance recitals and Abby’s basketball games. We've been able to travel a bit with the girls. Fewer things in general seem as daunting or impossible at this point. Knowing that Aron’s hardest days are behind us is a powerful thing.
The last couple months have seen some exciting changes. At this point walking is still Aron’s greatest challenge. He returned to in-person physical therapy which he felt was very beneficial. However, since it involved visits to our local clinic it seemed that after every visit he would end up sick in bed for a few days. He’s going to pause PT until cold and flu season is over because he’s tired of getting sick. What this has allowed us to see though, is how Aron’s body responds to being sick. When Aron would get sick before HSCT he would become almost completely paralyzed. It almost always meant borrowing a wheelchair from a friend, finding the physical help I would need to lift him between the car and wheelchair, a trip to the hospital with sometimes a several day stay, hefty doses of steroids, lots of sleepless nights, trips to Asheville. It was expensive, exhausting, and incredibly scary. It is with cautious optimism that I say those days seem to be behind us. Aron has gotten sick at least 4 times since December. He slows down and needs more rest, but has rebounded quickly and fully with no intervention.
The newest exciting thing about Aron's recovery has been with a visit to an orthopedist. Aron is going to be getting an assistive device that should help with walking. His right foot does not communicate with his brain the way it should, which makes Aron have to consciously think about every step he takes. Walking is exhausting when you have to literally tell your brain to lift your foot with every step. This device should take some of the work out of that, allowing Aron to walk more safely and for longer distances. There is also some discussion of another treatment which involves his plasma acting in a similar way as his stem cells did with HSCT, but with the focus on nerve regeneration. This conversation is still in the early stages, so I don’t want to say much because what I say will likely be wrong.
To say that this experience has hugely impacted our family’s lives is an understatement. Not only has it given us hope and optimism for Aron, but it has influenced our family in ways we never saw coming. Anna is graduating from high school this year. She plans to go to college next year to begin her education towards a degree as either a physical or occupational therapist. Seeing her dad’s journey through this experience has inspired her to want to help others who face his same challenges. The other exciting way we are seeing HSCT impact our family is that Aron’s sister, Suzanne, will be undergoing HSCT this coming May. Suzanne does not have MS like Aron, she has a different auto-immune disease called Lupus. Rather than attacking the nerves like MS, when you have Lupus your body attacks your organs. In addition to the symptoms of the disease, she has to take a tremendous amount of medications that all have consequential side effects. She is a wife and a mother, she works as a registered nurse who dedicates her days to administering chemotherapy and supporting cancer patients all while struggling with her own health battle. HSCT is proving to be beneficial for so many autoimmune diseases including Lupus and Diabetes. The problem with it is that it is still in clinical trial stages in the United States. When your body is fighting a battle against itself, time is not on your side. Without being accepted into these trials you have to seek treatment outside the US. Health insurance will not cover the cost of treatments out of the country which means a $55,000 bill for the patient. While this is a small fraction of what the cost would be if you were to have this done in the United States, the cost is still prohibitively expensive for most people. We were so fortunate to have the amount of love and support from our family, friends, and colleagues that we did when Aron went on this journey, we want to support Suzanne as much as we can. She will be going to the same clinic that Aron went to. The $55,000 covers the entire cost of the treatment and all related medical expenses, living accommodations and food for the month that you are undergoing treatment. The care provided by this clinic is a demonstration of healthcare at its finest. When you remove insurance companies from the healthcare equation the dramatic improvement in efficiency and care is unbelievable. The only additional expense to her is the cost of her flight. I am attaching a go fund me page to this post. If anyone has anything to give, I know our entire family would appreciate it. Suzanne, we love you and are so excited to watch you get your health and life back.

Please help us to help Suzanne pay for the cost of HSCT for the treatment of her… Kathryn Errion needs your support for Donate to Give Suzanne Hope and Health

25/01/2024

It’s hard to believe that its been a year since Aron and I were in Mexico, and I’m long overdue for an update on Aron’s progress. Recovery is long and slow, so it’s hard to have frequent updates without them being boring and repetitive. So, I’ll continue to update on big milestones, but spare everyone the day to day goings on.
We’ve had a lot of big changes in 2023, so in many ways it has been a year of figuring things out. Yesterday, January 23 marked 1 year since Aron had the stem cell transplant. The projected trajectory for recovery is that it takes about a year before a person who has undergone HSCT recovers to the place they were at before undergoing the transplant. After HSCT Aron was pretty fragile. His energy level was low, and his body seemed more sensitive to everything. He had to be extra careful about what he ate, how it was cooked, how long it had been open or how long ago it was prepared. He had an allergic reaction to the antibiotics he was on to prevent infection. We had to watch for fevers, and be mindful that everything stayed clean and sanitary. Aron has been very fortunate throughout his recovery to have stayed healthy. With the exception of a couple little colds early on Aron hasn’t gotten sick. This has been super helpful with making his recovery as smooth as possible. Making sure Aron stayed healthy made life interesting, it meant that he has mostly stayed at home and relatively isolated for the last year. After we’d been home for about 3 months Aron started going back to work. We were so fortunate that he was able to take that time he needed off of work and to work from home when he was able. We are also incredibly lucky to have the staff that we do who kept things afloat while he was out. Over the past couple of months Aron has felt more comfortable going out again. We’ve gone out to eat at a restaurant a few times, went to a family wedding, he’s gone to Abby’s home basketball games, made a couple of trips to the grocery store. We even went back to Mexico in December, and this time we got to take the girls and have a wonderful vacation, it was lovely.

After HSCT Aron fairly quickly saw some improvements in some of the MS symptoms that he experienced. He experienced some pretty significant leg spasms for the last few years. These really decreased soon after HSCT. He also had the annoying need to p*e about every 30 minutes. This was incredibly inconvenient for him and he was always having to plan everything out to accommodate trips to the bathroom. This has improved dramatically, he can now go hours between trips to the bathroom, as well as sleep through the night without having to get up to go. Prior to HSCT, Aron’s mobility was decreasing at a fairly scary rate. Walking was becoming a greater challenge all the time. Since the procedure Aron has focused a good deal of energy on not only trying to head off any further decline in mobility, but to also build strength and combat the damage that was already done. Since MS is often an “invisible” disease, one metric Dr’s use to determine the severity of a person’s disease is a EDDS (Expanded Disability Status Scale). A 0 score represents a normal neurological exam with no disability at all, while a 10 indicates death due to MS. Prior to HSCT Aron was a 5.0 on the scale. A 5 indicates “disability severe enough to impair full daily activities and ability to work a full day without special provisions. Able to walk without aid or rest for 200m”. After a year of recovery, daily physical therapy, 1-2 walks daily on the treadmill, and a general focus on wellness Aron’s EDDS has improved to a 4.0. He has been able to walk the 400m track at school without assistance, and can work a full day without special provisions. While recovery feels incredibly slow we are very encouraged by the progress he is showing. Going into HSCT you are told that what you are aiming for is to halt disease progression. At this time, it appears that Aron has had no progression in the last year, but the fact that he’s seeing improvements is very exciting. I am so proud of his hard work, self-discipline and diligence. He hasn’t taken his recovery for granted for even 1 day and has constantly done everything he can to ensure the best outcome of the procedure. We have so much to be grateful for through all this. We have had unwavering love, support, and encouragement from our family and friends. Our daughters have been anything but “typical teenagers” though all of this. They have been absolute rock stars about being supportive and helping to ensure that Aron’s recovery has been as stress and incident free as possible. I’m not sure how we are so fortunate to have the children that we do, but I honestly never would have dreamed that they would have handled this with the level of maturity, and empathy that they have. They're both amazing humans.
Since every day seems to go by a little quicker than the one before, we will continue to be mindful of and appreciate all that we have to be grateful for. The amount of love that surrounds us, and the hope that we have for Aron to continue on the path that he is on in his recovery. I truly feel that we are just at the beginning of seeing what that will look like. I’ve never known anyone with the self-discipline, strong will, determination that Aron has. I have no doubt that he will continue to push himself and improve as far as his body will allow.

03/01/2024

Happy New Year!
I apologize for not doing updates too often, I've been super busy which for me is a good thing.
First off, I feel great. Which feels awesome to say. Many of my issues have disappeared post treatment and the others seem to be slowly correcting. I've had a couple colds throughout the year but nothing very troubling. Overall, this was one of the best decisions I've ever made and I feel so grateful that the stars lined up for me and it was able to happen.
Over Christmas, Jess, the girls and I went on a family vacation to Cozumel, MX to spend the holiday on the beach. We had an amazing time, got to snorkel at some awesome reefs and eat some delicious fresh tacos. I took a drone with and got some cool videos.
Look out 2024, here I come!

18/04/2023

Tuesday, April 18,2023- It's beyond time for an update, and I apologize for not doing one sooner. We got sucked back in to the whirlwind of daily life as soon as we got home, and it's been busy ever since. Aron is doing well and continues to feel better and stronger. He had bloodwork a couple weeks ago. His levels continue to improve, but both his white and red blood cells are still on the low end of normal. This is to be expected, and he just needs time, and to stay healthy to continue to rebuild. He did get some sort of infection not long after we got home. None of the rest of us had any symptoms of illness, but he had a fever and felt pretty bad for a few days. His health care team helped him through it, and luckily we were able to avoid a trip to the hospital. It was a little scary, but now that we've been through it, I will feel better if we end up in that place again. Hopefully with spring in full bloom and the weather warming up we won't see so much illness going around. Also, I made the hard decision to leave my job at school. While I love the kids and what I did, I felt that it would be consuming to be constantly worried about what sickness I would bring home. I spent the better part of the last 3 years wearing a mask for 8 hours a day while I was at work because of covid, and I struggled with the idea of continuing that. I will start a new job next week with the US Forest Service. I'm excited about doing something new and different, and while I'll miss the love, silliness, and energy of my middle schoolers, I will have less interaction and exposure to every cold and bug that could get thrown at you. Change is good, and keeps life exciting. All in all, life is good. Aron has been getting out a little more. Staying at the house all the time was beginning to take a toll. He gets down to Wehrloom for a bit about every day now, and even went to the grocery store for the first time the other day. He still wears a mask when he's in public which will continue for a while, but feeling well enough to be walking around for longer periods is great to see. He's still doing the MS gym online, and yoga about every day. We are still going to the track to walk. 1/4 mile seems to be his limit without wearing him out for the rest of the day. Some days we go back for another 1/4 mile walk, but breaking it up works better than doing a 1/2 mile at a time. He'll continue to push and get stronger and better every day. I'll check back in a month from now with any updates. Hope everyone is well!

28/02/2023

We've been home just shy of a month, and Aron had bloodwork done the other day so I figured it's a good time for an update. Aron is doing well overall. He had a little setback about a week after we got home. He is on 2 prophylactic medications for the next 6 month as his immune system continues to rebuild. 1 is an antiviral and 1 is an antibiotic. Unfortunately, after being on the antibiotic for about 3 weeks his body decided it wasn't going to tolerate it. He developed a pretty nasty case of hives. It took a little over a week to get it out of his system and his body to settle down, but he is back on track. He was switched to a different antibiotic that he is tolerating much better. This one just had a lovely price tag of $78,000 for the 6 month course. Luckily we have insurance to carry the brunt of it. At some point I'm going to post my grievances about our healthcare system, just be warned. Fortunately, the the team in Mexico guided us on what we needed to do, and Aron's team here stepped up and got it taken care of. I can't say enough about our support system and how many people we are grateful for.

Aron had bloodwork done on 2/23 (his 1 month stem cell bday), and got the results back yesterday. Everything is looking good, and within a normal range. His red and white blood cell counts while within range are still very much on the low end. This is to be expected and will likely be the case for a while. We will continue to do what we can to protect him, and keep him well.

Every day is a little different. He has days when he feels good, but also days when he is really tired. This is to be expected at this stage. The damage to his nerves and brain still exists, and may never improve. This was not the objective of the treatment, the treatment was just to prevent any further damage. That being said, it may improve, and does for many people. And knowing Aron, if it's at all physically possible, he will make sure he gets all the improvement that he can. He has been doing yoga all along to help his mental state and his body's flexibility. Muscle tightness is an issue common for people with MS. He has also joined an online program called the MSgym. The program is with a physical therapist that focuses on exercises that retrain those receptors in the brain to allow your body and brain to communicate better. Much of the emphasis is on moving correctly, and trying to overcome some of the compensating that we allow our bodies to do when movement is hard. I have been pushing him to take what he's learning to the track at school. We've been going out every chance we get and he walks 400 meters focusing on form. He is confidant that this is not something he would have been able to do prior to our trip to Mexico. On Sunday we even went twice with our goal this week to increase to 800 M. (1/2 mile). I'm so proud of how hard he is pushing and what he's accomplished so far. We have a lot of work ahead of us though, but I know that we will get there.

Life certainly doesn't stand still for anything and it's been an adjustment to come back to. Still have lots of extra cleaning and maintaining of things to do on a day to day basis, but with all the other stuff thrown in. Fortunately, I haven't had to return to work yet and Aron is getting more independent all the time. One of the very exciting things we came home to is Abby's basketball team's progress. They came in 2nd place in their conference and have now moved on to the 4th round of the state championships. Last week involved a good deal of traveling to be able to watch their games (2 games were 4.5 hours away). Tonight they get to play at home. Even though Aron can't attend any of the games in person, he is able to livestream them and stay connected. This has been a gift. So tonight is a good night for some Lady Knights basketball, and we look forward to watching our girls move on to the final 4!!! Go Black Knights!!!!

07/02/2023

Tuesday-2/7- We made it home!!! It didn't really take us 3 days to get here, we got here Saturday night, but have been busy settling in and catching up with family.
Travel was stressful, as usual. Fortunately we had a direct flight from Monterrey to Atlanta and a friend picked us up and drove us the 3-1/2 hours home. It was a long and tiring day, but Aron did great and even had a little left in him to visit with the girls for a bit before going to bed. Sunday was a day of unpacking, settling in, and catching up with the girls and Grandma. It was so nice to be home and back together again. Yesterday (Mon.) Aron had a visit with his nurse practitioner here in Robbinsville. She is wonderful and has been very supportive of Aron since he told her about doing HSCT. She's willing to see him in the parking lot of the clinic to help protect him and keep him away from possible illness. She was pleased with all the results of his bloodwork he brought back and how good he looked. We are so lucky to have someone so great right here in Robbinsville to help look after him. We went for a drive after the appointment to see what all is new in town and just get out and about for a bit. It's been a month of being inside for the most part, so it was good to get out and see this beautiful place we get to call home.
We got to wrap up our day with some good ol' Black Knight basketball. Boy, it's good to be home.

As life returns back to its steady pace I probably won't post as much on here as I have been. As Aron continues to progress I will update with how he's doing and any major changes along the way. We know there's a long road ahead of us, but we know he's got the determination to take it on and love and support to help him get there. Thanks to everyone for the kind words and the love you have given as we took this on, it meant the world to us.

04/02/2023

Heading home!!!!
We're getting packed up and our driver should be picking us up in 3 hrs. So excited to see the girls this evening and be back in our bed. There's truly no place like home.
All the best.
Aron

02/02/2023

Wednesday 2/1- What a busy day it's been. We started with early morning bloodwork. He had the same panel done on Monday and his neutrophils were low and indicated that he was neutropenic (susceptible to infection), today they had bounced back and looked good. He is now out of neutropenia. This led to the final medication for this trip (other than antibiotics and anti viral meds he'll take for the next 6 months while his immune system rebuilds). He had an infusion of a drug called rituximab which is similar to ocrevus, the immunosuppresant he has taken for the last couple years. This is a semiannual infusion that we have traveled to Atlanta for him to receive. The purpose of him getting this medication today was to continue to suppress the production of his B cells. The B cells are the ones with the MS mutation (I don't know if that's the right word). Anyhow, by suppressing the cells that carry that faulty characteristic the goal is to allow his immune system to continue to develop in a healthy way in the event that his body tried to produce those bad B cells again. I guess it's like insurance to protect the body as it heals from re-developing MS. Assuming all goes according to plan, he will never need this medicine again. Yay!

The infusion lasted about 4 hours. With the rituximab they also give him a healthy dose of Benadryl, which makes him super sleepy and just feel bad in general. With ocrevus he's usually better the next day and even better the following. By the time we head home we expect that he'll be in good shape.
We're wrapping up the day now and about ready for bed. The next couple of days should be just a Dr visit, tying up loose ends, and getting everything packed up and ready to travel. It's hard to believe.

01/02/2023

Tuesday 1/31- Here we are, at the end of January. What I thought was going to be an incredibly long and boring month has proven to be anything but that. It has actually gone by much quicker than I expected. I was pretty sure when we set out for this trip that I would go absolutely stir crazy and drive Aron nuts. That hasn't really been the case. It has been really nice to just spend time together. Our lives have been non-stop for years, and often we have to divide to be able to accomplish what needs to be done. Unfortunately, that means that we're not on the same schedule and we generally spend way more time away from each other than together. This month has been been a good opportunity to reconnect. While I can't wait to be home to our family and back to the normal daily chaos, I will miss this quiet time we've had together.

So, on to Aron and how he's progressing. He had bloodwork done on Monday morning, and a visit with the hematology team in the afternoon. Just as the Dr. predicted, his bloodwork showed that his neutrophils had bottomed out. He was at 10 which is an incredibly low count, neutropenia begins below 1500. Fortunately, as they begin to reproduce their growth is exponential. He'll have bloodwork again tomorrow followed by a visit with the hematologist. They are expecting his white blood cell count to be going back up towards being out of neutropenia. It will be interesting to see what it says. After that, he'll have a couple more visits with Dr.'s, an infusion of some meds to help transition his recovery and then discharge. When we get home we will have to continue to be very cautious and protective of Aron. We have been assured that his recovery is going to be a marathon not a sprint as we slowly expose him to things his body no longer knows how to tolerate or resist. We've had lots of help on the home front getting the house cleaner than it's probably ever been, and set up and ready for him to come home, for that and all the other support and love we've been shown, we couldn't be more grateful.
I'll update tomorrow with what we find out...

29/01/2023

Sunday 1/29- Less than 1 week until we head home!!! Yea, I'm so excited.

I haven't been doing a very good job keeping this updated the last couple days, but it's not because things aren't going well, they are. They've been rather uneventful and slow.

Aron had bloodwork done on Friday and it was a little late when we got home from the clinic. Things took longer than we expected, but at the end of the day it was a positive visit. His neutrophils had gone down some which they expect to continue to lower until Mon. of this week before they start going back up. This is what indicates the he's in neutropenia. Since his immune system is very low he is very susceptible to infection. I spend a lot of time wiping down surfaces he touches, doing laundry, and just basically keeping things as clean as I can. However, the Dr. told us that generally if a patient gets an infection it is usually from a bacteria that comes from within their own body. Aron spent a good amount of energy making sure his body was as healthy as possible before we left to come here. He focused on his gut health to have a balance of good bacteria to combat bad bacterias. He also takes supplements and vitamins to stay healthy. Who knows if this is why he's faring so well, but I'm sure it didn't hurt. Although his neutrophils were lower a good number of his other markers had improved including his red blood cells. This explains a small boost in his energy level and overall how he's feeling.

He starts out the day with what appears to me to be a normal energy level. This wanes throughout the day, but he has gone from napping 2-3 times, to just 1.

So far, the only negative aspect of this has been it caused him to have a what feels like a small MS flare. Any time Aron gets sick or compromised in any way his feet become more numb than they normally are and begin to feel very heavy. This makes it incredibly hard for him to walk and has a few times landed him in the hospital. This time the numbness is there, but not in a completely debilitating way. He is still mobile but relies on a walker, which he generally does not. We're hoping this is something he rebounds from quickly, but has not yet. The Dr. explained that it isn't uncommon to experience this with HSCT.

Overall some of the improvements he saw early on have remained and we are feeling optimistic that perhaps they weren't just short term improvements.

Today is another home/recovery day. I plan to do a little baking, and try to do some exercise. I'm starting to plan for our journey home, and how we will manage challenges like having food for Aron to eat while we are traveling. He won't be able to eat anything prepared outside of home for a while. So far we've done well with having healthy good meals but when we're in airports, on a plane, and on the road it may be a little more challenging.

Tomorrow Aron will have more bloodwork, and go back to the Dr. to be rechecked. Looking forward to a good report.
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

27/01/2023

Thurs. 1/27- Today was what we expected it to be. Aron's energy level is low. He napped a couple times today and mostly just hung out. He didn't feel like doing much exercise, but walked a little. He still doesn't want to eat a whole lot, but did pretty good. All in all other than being a little extra stiff, he's not in pain and is keeping his sense of humor.

Today we just hung out at the apartment. The Dr. came and gave Aron his shot. He is still getting the stem cell mobilizer shots daily to keep stem cell production up. Tomorrow morning Aron will have blood work then we'll go to the clinic to meet with a panel of the Dr.'s to review bloodwork.

So happy to have been able to livestream some Black Knights basketball tonight. It made our hearts happy.

26/01/2023

Wednesday 1/25- Today Aron had bloodwork done which indicated that he is now neutropenic. Everything seems to be following the projected time lines and symptoms seem to align with what is expected. It's nice to have peace of mind that even though things seem so unusual they are totally normal when it comes to this. The biggest symptom Aron has at this point is very low energy level. He sat around and rested yesterday, so today we made a more conscious effort to get him up and moving more often. A short walk, maybe 50 yards would end in a nap, so we kind of alternated walking, eating, and napping a good part of the day. The Dr. explained to us that his low energy is caused by anemia, which is a normal part of this process.
Aron still isn't really wanting to do a whole lot of eating, but he did better today. He seems to be really craving the vegetable soup I've been making. This time I added chicken to his to give it extra protein in addition to the bone broth. He ate 2 huge bowls, so I was happy. I've noticed that he's lost some weight, and maybe some muscle. This isn't surprising at all, but I have to keep on him to eat every few hours. This is totally not normal for him, generally he eats constantly.

I have been very focused on cleanliness this whole time we've been here in preparation for this specific time. I do lots of laundry. We don't use towels or clothing more than once, even if we don't leave the house. Everything gets washed between uses, and we wash our bedding every other day. We have a housekeeper that comes every day, so this place stays very clean. Right now Aron is physically vulnerable and susceptible to infection. We wash hands constantly and wipe surfaces with antibacterial wipes multiple times daily. It's pretty intense. His neutrophils are expected to continue to go down through Mon. with that he will get weaker and more tired, but then they begin to go back up. Bloodwork will be done again this Friday, and Monday, and Wednesday of next week. As long as his levels have gone back up to where they need to be by Wednesday we will be clear to head home on Sat. 2/4. YAY!

This is a photo of Aron taking a walk today. He did about 4 laps up and back. Had a nice block of sunshine to stay in. It was a pretty day out. He can't be around anyone but me, the Dr. and housekeeper right now. When it's just me and him we don't wear masks, but any time anyone else is around we all mask. 😷