4 months later...

I am a pathetic blogger! But I finally feel like I have significant news to share about my dad. To cover the last 4 months in a few sentences, Dad has remained at home, his latest PET scan (almost 2 months ago) was clear of cancer (Yay!) and he has continued to feel horrible most of the time. If I remember right, he was about 150-155 pounds when he came home from the hospital and now he is 140. He is able to do a lot of things I guess, but he tires out really fast and his stomach just hurts all of the time. He did have a hernia repair I think in June, and then went in last week to repair the repair...

I am trying to keep this short and it is hard! Anyway, almost 2 months ago, Sam's wonderful Aunt Karen brought to my attention something from my dad's pathology report from his surgery back in February. It basically stated that he had cells that were consistent with Celiac disease! No one had ever shared this with us, but conveniently we were going to see Dr. Sharma (Chemo Oncologist) the next day for the PET scan results. I thought this was for sure our answer as to why he wasn't getting any better. We brought it up with the Doc and he completely blew it off. I won't say much, but this is what he told my dad. "We don't want to restrict your diet. You just need to eat more. And you won't like ANYTHING gluten free" !!!! All I will say is that my dad really trusts doctors.  It was a very painful and frustrating 6 weeks or so as I watched him get worse by the day. Most days he would feel horrible and he would get a day or two here and there where he would feel a little better. 

Long story very shortened... a couple of weeks ago my dad started seeing this doctor in Midway that does some alternative treatments. I am not sure on all the details, but I did know that she ran a gluten test on him. I tried to patiently wait for his results as we all (my brothers and me and our families) were becoming more and more concerned. Last Thursday, August 16th, Dad came to me with his test results asking for help. The lab results said, "You show very servere allergies to gluten. Most likely you have celiac disease. This would put a lot of stress on your pancreas, and would keep you from being able to gain weight. It also increases the risk of cancer. Recommendations; Stay away from wheat, oats, rye and barley FOREVER" !!! Prayers were answered that day for sure. He came when he was ready and now, hopefully, there will be no turning back. He has been eating gluten free for 5 days now going on forever I hope.

Please remember him in your prayers, that he will be able to sustain his new diet and that he will start seeing results that will be undeniable! And, if you have any gluten free recipes that you love, send them my way ;) I have been eating mostly GF for about 4 months now but I am still learning a lot, and my dad has to be much more strict than I am. Thank you for all of you love and support. Sorry I haven't been very good at keeping you all in the loop. 

Hey all! Sorry again it has been so long. We are getting settled in our new place and I guess I have gotten a little lazy :) So, a quick update:

Dad came home from the hospital 2 weeks ago today! He did come home with the feeding tube for the first 5 days, getting fed during the night. He still was just not feeling well, having a very difficult time eating, and VERY weak. He got down to 150 pounds at one point during that week I think. On Friday of that week he met with Dr. Sharma, his oncologist. Basically what we learned was that they like to do radiation after a Whipple and it is only proven to be effective if done within the first 3 months after surgery. This is my understanding. It is done to try to wipe out any remaining cancer cells that may have been damaged or weakened or left behind during the surgery. If a person, like my dad, is unable to do the radiation within that time period than usually they don't do anything. They continue doing checkups and scans every couple of months and watch for signs of cancer growing or spreading. SO, basically my dad has 2 weeks before his 3 month window is up and he is doing his best to be healthy enough to do the radiation. He is going back in on Saturday for a CAT scan and then Monday to see Dr. Sharma again to see if he is well enough...

So, that Friday with Dr. Sharma he had his feeding tube pulled out and went home to conquer the world. Much to my dad's frustration he didn't start feeling better the next day, or even 10 days later. He still isn't feeling well most of the time, he hasn't gained a pound, his energy is horrible, and eating makes him sick. BUT he is home and he is free. He drives himself around all over the place and is able to be somewhat human. Better right?

Great news at last!

Hey all,

So I know I haven't posted in a while. First I feel like there hasn't really been any news, and we have been finishing up our house and just moved in yesterday!

That isn't the great news though... Dad went to see Dr. Mulvihill up at the Huntsman and he got his last 2 drains removed and was told that he didn't need the IV antibiotics anymore!!!! And, the doc thought that they should remove the feeding tube and send dad home on Monday. WOW! So, I think dad is going to have them remove the feeding tube, but he better be ready to do some serious eating or he is going to end up having it put back in... I think it will be a lot easier to eat at home. The hospital food make him nauseous ;)

The not so good news is that he does still have cancer in his lymph nodes, like we already knew, and the docs think he should start chemo in the next 2-4 weeks :( It is obviously his choice and they said he could just wait and watch for symptoms and have regular checkups and scans/blood work. I don't think he is going to be ready in 2-4 weeks. He is down to 158 pounds and has a lot of recovering still to do. Not sure what to think about the whole chemo things. Ultimately I guess it is up to him.

Anyway, thanks for all the visits to Dad. It means a lot to him. He gets VERY lonely down there in Orem. Love you all!

Just quickly...

Docs didn't see anything on the CAT scan. Dad is still having the pain, but other than that is doing well. Well enough to call me every night to check and see what we are up to. Almost back to his old self ;)

So dad has been doing pretty well since his move to River Bend minus a couple of issues. His Hematocrit did drop down to 22 and he had to get 2 units of blood transfused, and he has been having a new pain in his left side. It has been going on for about 3 days and so today the docs decided to do a CAT scan. He had to be transported to some Orem community hospital to have that done and we never did get the results today.

So, I guess he is doing okay. I would think if the scan showed something bad they would have made sure to pass on the results...

A change of scenery!

Hey all! Sorry I didn't post before now. We have been very busy finishing our wood floors the last few days...

So! Dad got moved to Utah Valley Specialty Hospital yesterday! His white count never went back up and he is feeling pretty good. So, this is a huge step in the right direction, home!

The hospital is located in the Riverwoods commercial development right at the mouth of Provo Canyon, only 25 minutes from Midway, which is awesome. He is in room 208 and here is the address:

306 West River Bend Lane Provo, Utah 84604
(801) 226-8880

We are calling it River Bend for short :) No one will be spending the night with him there and mom won't be with him all day, everyday anymore, so if anyone feels the desire to visit I know he would love it! It is really good for him.

Thanks for your endless prayers. Love you all!

So, dad is doing okay. Not great improvements, but not really any worse. So, that is good. He hasn't gone backwards for almost 3 days now :)

Friday his white count had gone down to 10, and then yesterday and today it was down to 8. So improvement! His hematocrit has gotten kind of low again, but they haven't had to give him another blood transfusion yet. I think they are hoping to send him to the long term facility on Tuesday, as long as things continue to improve.

He has been able to go walking outside a little bit and that has felt really good. I think this warmth and sunshine has been good for all of us :) Happy Spring!

Hey all,

Sorry it has been a few days. I only have a few minutes but I know so many of you are waiting for news. VERY quickly:

Wednesday-WBC count down (hurray!) and had a good day. Ate more than he had for a long time.
Thursday-WBC back up (BOO!) and had a crappy morning at least.
Friday-From my very brief update from mom, WBC back down a little, bleeding quite a bit around one of his drains, and plan is to keep him over the weekend at Huntsman...

Sorry not very detailed. Not very fun to post when things seem to be up and down every other day... Praying he will beat this stinkin infection.

Love you all!

So, Dad's WBC count was up even more today, so they did another CAT scan. It looked like the 2 large areas of infection from last Friday were smaller, but one other area was not shrinking and so they did another paracentesis (sp?) and drained a bunch of fluid and placed a 3rd drain up between two of his ribs. This is causing him a bit of pain, but all in all everyone seems pretty positive. In general the CAT scan looked better than all of the previous scans, and he feels better today than yesterday. I think he seems better in general than when I was with him on Friday.

SO...one day at time! Lets pray for a lower WBC count tomorrow :) If all goes well they are talking about sending him to the long term facility on Friday.

By the way, the doctors have been very attentive since our meeting last Friday ;) To say the least, we were very bold in voicing our frustration and our desire for better communication. It's nice...

Again?

Hey All,

So... my dad was supposed to be moved to the long term acute care hospital today, BUT his white count was up AGAIN. Will this poor man ever get some good news that lasts??? He just isn't feeling all that well either. Even he's not sure if it is because he really isn't feeling well, or if is just because he is down in the dumps. He ate a single piece of cantelope (sp?) today and had to have a puke bucket nearby. Docs said if it doesn't go down tomorrow morning they will do another CAT scan...

Just in case you have been contemplating it, he does enjoy visitors :)

Sorry that is it for tonight. I know I said I would fill you in on the meeting. Maybe tomorrow...

Love ya,
Darcy