When life sucker punches you Updated

naednek · Post by **naednek** » Fri Mar 12, 2021 6:26 pm

Well, I guess it's not much of a sucker punch when you know that it's coming...

I'm very public with Ethan's life with Cystic Fibrosis. It's a chance to spread awareness and a place for me to vent as I don't have much of a social life.

In February Ethan who is now 11 (can you believe that) starting developing bruising on his outer legs\thighs.

At first we just thought he bounced around too much but they kept coming back. We had our quarterly clinic and shared this with our team. One of the doctors had a look of shock and concern almost immediately and I knew this was going to be bad. They asked some questions and gathered info. They asked to wait a month and test again with blood draws and a ultra sound.

They were concern his spleen may be enlarged which can cause bruising.

We took him in on Tuesday and later that day results came in. His blood work and liver enzyme levels were all normal, and his spleen actually shrunk by 3 cm.

We were so happy we missed reading the other results on the Ultrasound. We were still confused on why he was bruising but had felt relief it wasn't his spleen as they were discussing the possibility of removing it which would be another challenge on keeping him healthy.

The next day my wife decided to look at the ultrasound results again and realized we didn't see what was said regarding his liver. Ethan has cystic fibrosis related liver disease that was diagnosed when he was 4 years old. He's been taking a drug to keep his levels down and had 2 ultra sounds a year to monitor.

Each time the results would relatively stay the same with slow progression until Tuesday's results...

They found scarring on his liver. That's not good and we stupidly started looking up medical terms to try to understand what we are looking at on the report. That didn't help as it started getting dark and scary the more we searched. We anxiously waited the next day to talk with the doctor.

She confirmed he has scarring and has estimated he's between level 3 and 4 of cirrhosis. There's 4 levels, with 4 being the highest. She's encouraged that his enzyme levels are stable. We don't know if that new drug he's been (orkambi) helped speed things along, or this is just what happens. We've seen great results with Orkambi as he no longer needs to have enzymes to absorb nutrients from his food. His pancreas is now sufficient and can do that job without help. He's gaining weight (15 pounds in a year) which is great because when you have CF you tend to not gain weight and that directly relates to your health. Now they are concerned he's gaining too much and wants to make sure his abdomen doesn't store too much fat which will put pressure on his organs and make his liver work even harder.

So while Orkambi has benefited Ethan in certain ways, it may have speed up the progression. They had monitored his liver and blood levels closely since being on Orkambi and after a year of being on it didn't see a change to cause concern. Sometime between now and when he turns 12 he will be eligible to take a different drug that does even more, but it's possible it could also hurt his liver. It may also help. We will have to cross that bridge when we get there.

Needless to say we're freaked out and while we knew about the liver disease, we thought this would be an issue much later in life.

So that's where we are at right now. We feel a little better now that we know the extent and have a game plan, but still doesn't change the fact that Cystic Fibrosis sucks.

Thanks for listening
Ken

Carpet_pissr · Post by **Carpet_pissr** » Fri Mar 12, 2021 6:49 pm

I'm sorry to read that, brother. I respect your stoicism (and all on here who face serious health issues with loved ones/themselves), and I hope this new condition is manageable by the wonders of modern medicine.

Kraken · Post by **Kraken** » Fri Mar 12, 2021 6:54 pm

Is he a candidate for a liver transplant? We have an expert on those here.

Daehawk · Post by **Daehawk** » Fri Mar 12, 2021 6:57 pm

abdomen doesn't store too much fat

If only I could get mine to stop doing that. I was going to call hi ma tough little guy but goodness he is 11 now! Probably getting to be as tall as his dad or near bouts. Good luck with it all. Hope he does great.

Also milk thistle for liver. Its pretty amazing. Our little dog had liver problems and perhaps even a tumor on his liver once and we started milk thistle and it all cleared up. Thank goodness. Read up on it at least Id suggest.

Holman · Post by **Holman** » Fri Mar 12, 2021 7:07 pm

I'm so sorry to hear this news, naednek. Your family has been through so much and done so much so well.

I'm thinking of you and yours, and wishing for all the best outcomes.

naednek · Post by **naednek** » Fri Mar 12, 2021 7:08 pm

Kraken wrote: ↑Fri Mar 12, 2021 6:54 pm Is he a candidate for a liver transplant? We have an expert on those here.

not yet. The doctor said he's not there yet. But she did say if he kept progressing she would refer him to UCSF. She said of all the transplants liver is the one you want as it's the most successful

Jaymon · Post by **Jaymon** » Fri Mar 12, 2021 7:19 pm

Thank you for sharing.

Ethan has a fan club here, even if he never met most of them.

Zarathud · Post by **Zarathud** » Fri Mar 12, 2021 8:03 pm

It's hard to believe Ethan is 11, and that you're dealing with liver issues already.

Sucks is an understatement. Definitely felt that punch right to the gut as a parent with my own girls who will eventually face complications from Type 1 Diabetes. You can take every precautionary step, but can't control everything.

But I'm glad your doctors have a game plan. Best hopes for progress and better news soon.

Jaymann · Post by **Jaymann** » Fri Mar 12, 2021 8:09 pm

Wow, sorry man. Best of luck going forward.

Alefroth · Post by **Alefroth** » Fri Mar 12, 2021 8:10 pm

So sorry, Ken.

Xmann · Post by **Xmann** » Fri Mar 12, 2021 9:02 pm

Sorry to hear Ken. Glad they've caught it and can keep a close eye on it. Your family will be in my thoughts. You've had kind words for me during my illness and I haven't forgotten it. I've always thought of you and your family as strong folks and that says a lot. You guys hang in there.

Enough · Post by **Enough** » Fri Mar 12, 2021 9:12 pm

Jaymon wrote: ↑Fri Mar 12, 2021 7:19 pm Thank you for sharing.

Ethan has a fan club here, even if he never met most of them.

Well said, definitely rooting you all on with lots of love, strength and healing vibes being sent your way!

Skinypupy · Post by **Skinypupy** » Fri Mar 12, 2021 9:14 pm

Damn, so sorry to hear that. Definitely keeping you guys in our thoughts.

Anonymous Bosch · Post by **Anonymous Bosch** » Fri Mar 12, 2021 9:22 pm

Condolences for the negative development and all the best to you and your family going forward.

hepcat · Post by **hepcat** » Fri Mar 12, 2021 9:44 pm

Ah damn, I really don’t like reading this. Ethan will be in my thoughts. I hope he gets over this soon.

Zenn7 · Post by **Zenn7** » Fri Mar 12, 2021 10:05 pm

Tell him he's gotta make it. They got a garbage truck reserved just for him to drive! (He does still want to do that right?)

So sorry for you and your family and every one else with little ones having problems. Not great to have older people having issues either, but kids are just so much worse. Old people have at least had a chance to live and enjoy a full life.

Hopefully, Ethan will get through all of this and live a long and full life yet. Maybe even outlive you and your wife (after you have lived a much longer and fuller life than you have so far).

Lassr · Post by **Lassr** » Fri Mar 12, 2021 10:33 pm

Good thoughts for the little man.

Isgrimnur · Post by **Isgrimnur** » Fri Mar 12, 2021 10:45 pm

Best of luck and wishes going forward.

Zaxxon · Post by **Zaxxon** » Fri Mar 12, 2021 11:37 pm

Holman wrote: ↑Fri Mar 12, 2021 7:07 pm I'm so sorry to hear this news, naednek. Your family has been through so much and done so much so well.

I'm thinking of you and yours, and wishing for all the best outcomes.

All of this.

Unagi · Post by **Unagi** » Sat Mar 13, 2021 12:00 am

naednek wrote: ↑Fri Mar 12, 2021 6:26 pm
Thanks for listening
Ken

Please know that we all wish we could do even more.

Like everyone else, I'll be thinking a lot about you and your family - and I hope there are better days ahead.

Moat_Man · Post by **Moat_Man** » Sat Mar 13, 2021 12:53 am

Thanks for sharing Ken. The Moats will be thinking about you and rooting for Ethan.

Malificent · Post by **Malificent** » Sat Mar 13, 2021 9:36 am

Zaxxon wrote: ↑Fri Mar 12, 2021 11:37 pm
Holman wrote: ↑Fri Mar 12, 2021 7:07 pm I'm so sorry to hear this news, naednek. Your family has been through so much and done so much so well.

I'm thinking of you and yours, and wishing for all the best outcomes.
All of this.

Yes yes. Rooting hard for all of you.

Blackhawk · Post by **Blackhawk** » Sat Mar 13, 2021 9:49 am

Everybody here is on Team Ethan.

Smoove_B · Post by **Smoove_B** » Sat Mar 13, 2021 11:50 am

I can't add anything that hasn't already been said (better) by those before me. Hoping your family can get some relief.

The Meal · Post by **The Meal** » Sat Mar 13, 2021 6:25 pm

Positivity and support. Best luck to Ethan and the rest of the family.

Eel Snave · Post by **Eel Snave** » Sun Mar 14, 2021 12:36 pm

Oh damn, dude, that sucks. It hits home because my guy is named Ethan too. Much love to you.

pr0ner · Post by **pr0ner** » Sun Mar 14, 2021 1:08 pm

Good luck to Ethan and the rest of your family, Ken.

Madmarcus · Post by **Madmarcus** » Sun Mar 14, 2021 6:40 pm

I'm rooting for the entire Dean family but especially Ethan!

RunningMn9 · Post by **RunningMn9** » Sun Mar 14, 2021 8:28 pm

I can’t imagine what you are going through, but I will add my hopes for it to be manageable going forward.

Hrothgar · Post by **Hrothgar** » Sun Mar 14, 2021 9:00 pm

I know what it's like when your fears run out of control. Hopefully, the prognosis will be much better than you fear. We'll be praying for you and your family.

Lorini · Post by **Lorini** » Sun Mar 14, 2021 11:31 pm

I'm very sorry to hear this. I hope Ethan gets better soon.

dbt1949 · Post by **dbt1949** » Sun Mar 14, 2021 11:56 pm

You all have my best wishes for health and happiness.

Paingod · Post by **Paingod** » Mon Mar 15, 2021 8:20 am

I was gritting my teeth when I started reading, and hope you're doing okay. It sounds like it could have been worse, and I'm glad it wasn't.

naednek wrote: ↑Fri Mar 12, 2021 7:08 pm She said of all the transplants liver is the one you want as it's the most successful

That's encouraging, at least. I've always heard the liver was a robust organ.

naednek · Post by **naednek** » Mon Mar 15, 2021 1:18 pm

Thanks everyone.

I'm at the stage of acceptance. Not much to do about it except for some changes in diet and more excercise. The rest is out of our control. He's 11 and he's at the age where he understands more, but it's hard because we have protected him for so long.

We're meeting with a nutrionist this week to go over the changes and have her explain the changes to Ethan so that he will see it coming from a "doctor" and not mean mom or dad

I'm hoping he will be more agreeable coming from her.

While we talked with him at a high level, I'm thinking we will have one of the doctors explain more on what's happening so he understands better. He's at the age that he's going to be more responsible for his medical routines.

In fact in a year or two we will lose access to his healthcare email. Not very happy about that.

MHS · Post by **MHS** » Mon Mar 15, 2021 4:40 pm

I'm so sorry to hear this. Sending you and your family all the best thoughts. There's just nothing worse than your child having health issues, you would do anything in your power to take it all away but you can't. Hoping things progress in a positive direction.

Post by **ImLawBoy** » Tue Mar 16, 2021 9:46 am

Sorry to hear about the setback, but it sounds like you guys are handling this in the right way (not surprising). Good luck, and we'll keep you in our prayers.

naednek · Post by **naednek** » Tue Apr 06, 2021 11:24 am

So an update, and a good one!

On Saturday I took Ethan to Kaiser for an MRI to get a better idea on what's going on with his liver.
They took images with and without contrast. He laid in that skinny tube for about a hour and half. It was his first time without being sedated. He did great. He was able to watch a movie through plastic goggles and headphones. Mind blown.

We got his results later that evening. Based on what we read and could understand it seemed like it was good news considering what we saw on the ultrasound but we decided to not Google and obsess over Easter.

Today the doctor sent us an email stating they results were good. There are some cirrhosis on his liver but not the entire liver. No lesions or tumors. His pancreas shrunk and his spleen remains not enlarged.

She would like to get a biopsy done to see where he's at as that's the gold standard on determining the severity. Since we found out about it Ethan has been eating a lot more vegetables and being more active.
So this confirmed what the ultrasound shown but it seems like it's not bad as initially thought.

So while it confirmed things, it gave us a clearer picture and we know that it hasn't progressed to all of his liver.

Isgrimnur · Post by **Isgrimnur** » Tue Apr 06, 2021 12:17 pm

Paingod · Post by **Paingod** » Tue Apr 06, 2021 12:26 pm

Any good news is awesome news. Thank you for sharing!

I hope it never gets to that point, but things like this are why I've signed up as an organ donor. I know it can change lives after I've stopped using my bits and pieces.

AWS260 · Post by **AWS260** » Tue Apr 06, 2021 3:20 pm

That's good news. Thanks for sharing it!