Update: 1/4/26

From the bottom of my heart, THANK YOU. You showed up, sent tons of love and light, food, flowers, gave money, gave time, Xmas presents, cookies (lots of cookies ♡), so many check-ins... the list goes on. I'm in awe of my community, my family and my friends. Thank you sooooo much. Words can't describe how loved and held I feel in the hardest time of my life.

Jodi and Tommy are doing ok. We like to talk about dad and think of the fun and loving times we had with him. It's been really interesting to reflect.

Poor Tom was sick for a long time. It breaks my heart at how long he suffered. During that time, he slowly drifted away from us. Since his sickness took over (long before I posted about it) the kids saw their dad have a hard time for a long time. We kept saying, "daddy's sick and we gotta get him better". I feel it was Gods way, having this be a gentle, drawn out process (for the kids) instead of Tom being here one day and gone the next. I don't know. I don't know why this had to happen. It doesn't feel real.

What does feel real is the outpouring of love and support. I couldn't do this alone. I can't thank you all enough for everything.

Tom passed away last night. Thank God he's no longer suffering. I love you forever Smoochy. I'm so sorry this happened to you. It's not fair. I'm so sorry you had to go through that horrible pain.

12/6

I never thought that'd I'd be posting this. I've been silent because I've been so sad and busy.

Tom is now receiving end of life care.

He's fought so hard for a long time. His body has been through hell. The medicine is no longer working. Tom's body decided it's done. This is heartbreaking for me to write.

One of Tom's last wishes was to go outside. Breathe fresh air, see the trees (not from a window), and feel the grass under his feet. He also wanted a final family photo outside. Anyone who knows us knows we like to capture our lives through pictures.

One of my friends had a photographer friend who, at the drop of a dime, came out and gave us a photo shoot. That was such a magical gift. We've always wanted to do that.

Tom asked that I brought him a nice outfit to wear for the last time. One of his friends bought him a pair of J's that he was excited to wear. It was bittersweet to say the least.

After photos we stayed outside for 45 minutes. The nurse took us on a little adventure. She pushed Tom's wheelchair by the water and let us all snuggle him and take in the fresh air.

After we came back inside and got settled, we had to tell the kids. That was the WORST thing I've ever had to do. It broke their hearts and the pain I felt was unreal. I feel so bad for them. They love their dad so much. He's always been a great dad.

They got on Tom's bed with him and we all held eachother and cried our eyes out. As sad as it was, I'm thankful we were able to be together and talk about it as a family. That was a gift.

I've been spending alot of time at the hospital with him. Tommy and I snuck one of our cats up to see him the other day. Silky sat on Tom's lap for 2 hours! Tom was beaming. The nurses thought it was really cool. It felt like magic to have Tom hold his kitty one last time.

Tom's on medicine to keep him comfortable. He's been conscious but sleepy.. He still has his humor and still makes everyone laugh.

I love you, Smoochy, King Sweetums ❤️

11/24 update:

What a difference from this morning at 7:30am, 1:30, to 3pm when I got to him - crrrrrazy. He was 3 different people. They're giving him the strongest antibiotics they have to cure the pneumonia and it's working! Also the chemo is kicking in!! He was a different person today. Better than I've seen him in a bit. We laughed, I cried (cuz he's turned a HUGE corner- MIRACLE). We listened to music, watched football, laughed, snuggled.... fantastic visit this afternoon. This morning I wondered if he was going to make it... This afternoon I'm wondering when he's coming home♡♡♡♡♡♡♡ Rheumatologist was in explaining that chemo should be kicking in today. They want to do another round tomorrow. I seriously went from desperate all day, week, months to hopeful TONIGHT. My mom and all of our angels are doing great work. Today is a major win!! Thank God!!!

11/23 update:

Tom has pneumonia again. They took him out of ICU this afternoon. His blood pressure and breathing are stable. He'll continue to be on oxygen.

Yesterday was so dann scary. I was with him for 12 hours. It was intense. I think I earned about 30 more grey hairs.

We're waiting to hear if he'll get another round of chemo tomorrow. So many ups and downs and unknowns. He needs to be stable enough.

This rollercoaster is awful. 45 days in the hospital and counting... Breaks my heart.

Thank you for the continued support and care. We see and appreciate you all.

11/20 update:

Tom had the worst day of his life yesterday. He was in horrific pain and agony. It was really scary. They don't want to give him pain meds because his kidneys are so bad, but I wouldn't let up about it. At the end of the day they finally gave him some. This is CRAZY. He's feeling a little better today. I'll take that as a win.

Today at the hospital, I made it clear we need to have a pain management plan because it's not ok to let Tom suffer like that.

He was on dialysis for 5 hours today. After dialysis he'll have another round of chemo. He'll do dialysis for the next couple days to remove fluid from his lungs. All of the fluid is because his kidneys aren't working. Breathing is difficult because of the fluid. That's why he's on oxygen. The fluid is very heavy and makes it really difficult for him to breathe or get comfortable. They don't want him drinking much fluids because it adds to the build up, but he's so parched he has no choice but to drink water. Scleroderma is detroying him.

The pneumonia is better but he's at high risk for getting it again.

It's finally starting to make sense to me. I've been so frustrated because they can't give us any definite answers but they can't because it all depends on how his body responds to the chemo, dialysis and all of the other meds. All of those treatments aren't automatic. They all take time. His body is fighting so hard. Tomorrow marks 6 weeks in the hospital.

11/16 update:

Tom is suffering badly. He has fluid on his lungs which is making it extremely difficult for him to breathe. He's been on oxygen all week and they keep increasing how much he gets. They've moved him into daily dialysis to help remove the fluid. Dialysis is a 4 hour process.

He's still on TPN nutrition and doesn't have an appetite because he's so sick. His mouth is constantly dry and it's almost impossible to quench his thirst. They say that's a symptom of Scleroderma.

The machines keep beeping all day and night which makes sleep problematic. He has chest xrays daily to monitor the fluid on his lungs. This is beyond painful to watch. I can't believe he's going through this.

They say in order for him to come home he needs to be able to eat and hold food down, his kidneys need to be more stable and he needs to have a spot at a dialysis center. They need the fluid off his lungs and he needs his "permanent line" in his chest which will be used for dialysis, chemo and blood draws. At least that will alleviate the constant poking on his arms. He's scheduled to get the line tomorrow.

These are not the updates I'd like to give. He's been in the hospital over 5 weeks. Poor King Sweetums...

11/10 Update:

Tom's on two antibiotics and oxygen because he has pneumonia. They've postponed dialysis til tomorrow. He'll get a permanent line on Wednesday, which will hopefully be more comfortable than the big thing hanging out of his neck. He'll need to be on dialysis for at least 6 months to figure out if his kidneys will heal or have permanent damage. They're still trying to figure out the best way to manage his nausea. He's able to eat a little but holding it down is a problem. He's still on iv nutrition and the nutrition team is pushing for the "up the nose to the stomach line (feeding tube?)" I can't remember what they call it but that's a hard no. He had that in the beginning of this and it was AWFUL. We're trying to maintain hope but that's become cumbersome. This is all very heavy and upsetting. I'm so sad for him. I'm trying my best to hold it all together. Tom is trying his best to survive. What a strange thing to have to acknowledge. Thank you all for your continued love and support. This is not fun.

11/6 Update:

Today marks 1 long month that Tom's been in the hospital and day 2 of 3 of dialysis. This is crazy. It's hard for him to talk. His voice has diminished. His body is fighting sooooo hard. I'm thankful and grateful that Tom's getting great care and treatment and on the other hand... WTFFF is going on? This is crazy and horrible. It's starting to really feel like torture lately. Scleroderma is hitting him hard. It's bad.

Yesterday I asked the doctor (the main Rheumatologist) why is Tom's case so rare and complex. He said most people with Scleroderma have all of the affects that attack the organs but not all at the same time, Tom's entire system is under attack - no textbook or normal explanation of why this is happening. Also the additional diseases and disorders add complexity.

Doctor said between the dialysis and chemo that they hope this helps him become more stable and on a better plan for the future. Interesting enough, the doctor used to be more hopeful and optimistic but changed and admitted he's not sure which direction this is going. Kidney failure is what they usually deem the worst. We have to wait and see how the chemo and dialysis help.

This has been going on for too long. He's been dismissed and has been unable to diagnose until only September. That's after a couple years of speculation and testing. He's got 100 doctors invested- they told us that the other day.

My heart breaks every time I watch them try to find a vein and miss - he's a living pin cushion. Scleroderma makes his skin thicken and tighten which makes it difficult or impossible to find a vein that works. Sometimes he needs a specialist to use an ultrasound. He's poked all day and night. It hurts him so bad. It's so sad.

He' hurting. I'm hurting. Kids are hurting. I can't believe believe this is our life.

11/1 update:

Tom's been in the hospital since 10/9. It's really wearing on him. The doctors keep finding new, rare things going on with him. To say this has been scary is an understatement. Every day there's an up and a down. We can't get any traction. Yesterday they had to do two PET scans because they didn't get everything they needed during the first one. They also did another bone marrow biopsy. Ouch! We're still waiting for the rest of the kidney biopsy results. The first part of the results show he has something called TMA in his kidneys which are small bloodclots that lead to narrowing of the vessels slowing blood flow. They're trying to figure out what is causing this so they can give him the proper treatment.

He had a severe headache the past few days. When I spoke with him this morning, it's gone! Small win! Since it's the weekend we won't get much information. Hopefully they'll let him rest. He's sick and tired of being poked with needles all day and night. Poor guy. Fingers crossed they have the information they need to get him better soon. The kids miss their dad.

Tom's symptoms started two and a half years ago. Things took a steep decline in June/July (6/7 haha see what I did there) and have progressively gotten worse. It's time to stop this suffering. As much as the kids miss their dad, they've been missing him a lot longer than these recent hospital stays. He's been going through this for so long. Breaks my heart.

10/24 Update:

As of the past few days, they're monitoring Tom's kidneys - his numbers aren't where they want them to be. They stopped one of his meds hoping that would improve things but it didn't. On Monday they're doing a biopsy on his kidneys. Yesterday marked two weeks of this hospital stay. I feel so bad for him. He has to get shots in his stomach every 8 hours to prevent blood clots. His belly is all bruised and scarred. All of this has been so much to process. It's hard to wrap our minds around everything. So far, the last treatment of cyclophosphamide has been smooth. No grueling side effects as of today. He's tired. His poor body is fighting so hard. On the bright side, he's now considered independent and can get out of bed on his own and finally shower. Yesterday was his first shower in 2 weeks! That was so good for him. The docs say this is going to be a marathon. He's got to keep fighting. We all need to keep rootin for him. Thanks for being our village!! All of the love that surrounds us is so warm. Thank you ❤️

10/21 update:

Tom is still in the hospital. On Thursday, it'll be 2 weeks - AGAIN! He's currently receiving his 2nd dose of cyclophosphamide. They're monitoring him closely for everything - every time another team of docs comes in to talk to him, they're finding another concerning issue. This is crazy. I'm so sad. I feel so helpless - this suffering is just horrible. Throughout these hospital stays, we're getting lots of results, ideas and concerns. This is a horrible roller-coaster. It's hard to keep track of. I'm on the positive side of the outcome of this round of chemo. He's getting a lower dose than last time, which will hopefully be less stressful on his poor, tortured body. He's been a prisoner of his hospital bed this whole time. Please continue to pray, send good vibes and lots of love to Tom, the kids and I. We all need it. Thank you for being our village and giving us encouragement, LOVE

and support ❤️

10/16 update:

Tom is still in the hospital, improving slowly but surely. He's allowed to have small drinks of water but still no food. They're starting to give him his meds orally opposed to iv. He's having another CT scan at some point today to make sure he's still moving in the right direction. He's still receiving nutrition through his channeled line which goes to his heart. What a wild ride. Fortunately, he's able to do little walks around the floor he's on. Getting out of bed is really good for him.

The kids and I are adjusting to this new way of life. It's been hard on us but we're making it work the best we can. Tommy has been crying a lot more and Jodi holds it in. She's been hugging me a lot more lately, which is sweet. This whole situation is absolutely heartbreaking. I keep a safe space for them to ask questions or just feel their feelings. Thank goodness they have sports. Sports are saving their lives.

We can't thank you all enough for the continued love and support.

Update: 10/13

Tom is out of ICU, thank goodness and getting taken care of in the hospital. Last night they removed the tube that was up his nose down to his stomach. He's had it since Thursday. It was there to remove gas from his stomach and bowels because his stomach and bowels were highly inflamed. That's how they rest them. He's been restricted from eating and drinking and only getting iv fluids. It's been hell. Poor guy wants to have a drink of water so badly but he can't because that will agrivate his system. He's only allowed ice chips. Today they're going to put in a channeled line which is an iv in his chest to give him TPN feeding - that means iv nutrition. He hasn't had anything for a long time. I feel helpless. We don't know when he'll be coming home. This has been a heartbreaking journey. Thank you for the continued love and support.

Update:

Just got home. They're admitting him to ICU. This is really stressful. He's on good meds which made it a little easier to leave. They're concerned about his stomach. Will be doing a bunch of tests. Having his heart problems and blood pressure and pulse so irratic is complicating things. They had to ask the tough questions - that sucked. Good thing is, Tom's not giving up. The doctors will call me with updates.

10/9/25 update:

We went to Tom's doctor appointment today and she looked at him and said you need to go to the hospital. She had to call an ambulance. We're at UW ER. They did x-rays and tons of labs. They just took him back for CT scan. There's fluid on his heart and lungs. His fever is down but his blood pressure is still really low and his heart rate high. They gave him a strong dose of antibiotics, anti nausea and pain meds and are hydrating him with an iv. He's really out if it. He gained a couple pounds after the hospital last time but has lost them. He is shaky and very weak and super lethargic. They think he has an internal infection and possibly a new thing with his heart. They also think the Scleroderma is affecting his digestive system. They said they are going to admit him. Poor guy is going through hell. We all are. Thank you always for your continued support.

10/7/25 Update:

We had a rheumatologist appointment yesterday and left feeling underwhelmed. Not only did we arrive a half hour early, anticipating traffic which was smooth, the doctor was over an hour late getting to us. We were there for close to 5 hours. The doctor was very thorough but didn't have any big answers or ideas. It was though, reassuring to me that the doctor acknowledged that Tom's case is very unique and difficult to pinpoint. His conditions don't usually go together which means he's a complicated case. This helps me understand why they can't get him feeling better. Also, Tom is on a bunch of medications which have potential side effects. Tom had more labs done and the doc made adjustments to what he is currently taking. Hopefully this will help him! Tom has good moments, but overall he feels miserable. We have a lot of upcoming doctor appointments and will continue keep hope alive. Thank you all for continuing to love and support us.

10/3/2025 Update:

Hi everyone, I wanted to share our progress. Tom has been up and down, having both good and bad days. Yesterday was a really hard day for him, especially the first half. Today is smoother. It's been a wild ride and a lot to keep track of. We had a routine checkup yesterday with our pc which was uneventful, thank goodness. This coming monday, we'll see his rheumatologist who is now his main doctor - he specializes in Sclaroderma. We like him. I'm curious what we'll learn about his condition and what the upcoming future will look like. Thanks for continuing to love and support us in all different ways. Feel free to reach out to me - Tom doesn't always have the energy to respond, please don't take offense. Thank you all!!! ❤️

Update: 9/29/25

Hey everyone,

We very much appreciate everyone's time and thoughtfulness right now. That said, Tom's energy level is low and although he ADORES seeing his friends, it's taking it out of him right now. The side effects are kicking in, and it can be really hard for Tom to engage because he gives so much during his visits and then there isn't anything left for the family because he's so exhausted. We'd like to ask that we take a visiting break right now until further notice. Tom's home and glad to be here. He's trying his best to "get back to normal" but it is very hard. His body's been through so much and we're adjusting to the new normal. I spoke with his doctors, and they reassured me it takes time for the meds to kick in and work. Tom's watching football at least but he's having a hard time keeping food down.

We are all feeling it. Tommy and Jodi miss their dad. Thanks for helping us!! I'm working soooo hard at keeping it together- this is insane!!

Rachael

Home sweet home. He's acting like nothing happened lol!! Gaaaawd, I'm here swirling... he was so sick he didn't realize he was in the hospital for 2 weeks!!

9/27/2025: Update from Rachael:

Tom's being sent home tonight. He has a bunch of doctor appointments already set up. The team of docs reminded me that home is healing - I'm nervous but I think it's going to be good for him to be in his own bed. So far he's tolerating the chemo. They said side effects sometimes take several days to show up. Hopefully they don't show up at all! Thank you truly for all of your support.

9/26/2025 Update from Rachael:

Tom is still in the hospital. He's been there since 9/13. They've diagnosed him with Vasculitis which is a blood vessel disease. It's affecting his aorta, the biggest blood vessel in your body. He's also having problems with his esophagus which is making it difficult to eat (digest) and drink fluids. They're still doing scans and tests trying to figure out the best route of treatment. In common cases they do a heavy dose of steroids. They can't do that with Tom because his kidney levels are up due to Scleroderma and that could send him into renal failure (that's very dangerous). They're waiting for approval for a med call cyclophosphamide which is a form of chemo. It's an infusion drug and is given every two weeks for 6 months. We don't know how long he'll be in the hospital. They said he needs to be able to eat (keep food down) and drink before going home. He's been nauseous, vomiting

and weak. This is beyond heartbreaking. On top of everything, his job doesn't make it easy to apply for FMLA or PMLA. Thankfully, my cousins Annie and Jeanne have been helping us with that but it's been a confusing process. I can't figure any of that out! Thank you all for helping us. We couldn't do this on our own. We're scared in many different ways. The main thing is getting Tom feeling better. The poor guy has been through the ringer. I can't believe this is happening. I'm so sad.

An important update from Rachael:

The kids finally got to see their dad today! It's been a difficult week with him in the hospital. Tom should be able to come home in a couple of days if his upcoming PET and CT scan come back ok. He's been on immunnosuppresive meds for a couple of days, which should make a difference in how he's feeling. Now he's on an IV for hydration because removing all of that fluid from his heart and lungs had him down to 150lbs and severely dehydrated. He's diagnosed with pulmonary hypertension and Systemic Sclerosis Scleroderma Diffuse (the bad kind of Scleroderma) and a blood disorder called Mgus. They've ruled out POEMS which is a good thing. Friday was the big day where many teams of doctors provided us with a diagnosis and a treatment plan (FINALLY). This has been going on for too long. It's going to be a journey as it has been but having meds to help him will be a game changer. Thank you all for your care, support and help, we sure need it.

Rachael

Hello everyone,

The Wagners need your help.

As you may already know, Tom was diagnosed with Systemic Sclerosis Scleroderma Diffuse disease on Friday, September 12th, 2025. They also suspect POEM's disease as well but are waiting on confirmation. These diseases impact the heart, lungs, and kidneys. Tom is currently being cared for at the University of Washington. He has severe pulmonary hypertension, high blood pressure, and his heart is in danger. They are working fiercely to remove the fluids surrounding his heart and lungs. This is what we know right now, and we will update you when we have more information.

This is an extremely difficult time for their family as Rachael is not only single parenting for her two young kiddos but also needs to be there for Tom in and out of the hospital as needed. She is going to be missing work, will need help with kids, and this should not be a time for them to worry about the financial implications of having a loved one in the hospital fighting for their life.

If you can, please donate; they would truly be so grateful.