June 2, 2016

June? How is it June? Yesterday marked 7 months since I called 911. Wow. Steve is sick and tired of being sick and tired. Geesh. Sweet man.

Today is a little better so far. Steve got up and did the dishes! They'll probably zap his energy right out of him here at radiation, but it was lovely having him join us for breakfast and scriptures this morning. What a blessing. The hair cut photos are still coming, so go back and check that entry if you want to be overwhelmed with the love and support Steve is receiving.

Soccer tryouts and track meets this week....we stay plenty busy.

Thanks for checking in.

June 1, 2016

Steve weighed in at 156.3 yesterday....fully clothed with shoes on. His blood pressure was 90/64. His home health nurse, Savanna, came and accessed his port and gave him a bag of fluids.  He'll get 2 more bags this week.

Steve was awfully tired yeaterday, and he slept most of the day. I think going back to radiation took a lot out of him.

Thanks for checking on us.

May 31, 2016

10 down, 20 to go (radiation treatments). It was a big weekend...Steve and Daniel got their heads shaved and everyone is finished with school. Steve took the older boys to the track yesterday morning. It wore everybody out.

Steve continues to fight pain and nasty side effects, but he's fighting. He's managed to stay healthy otherwise, which is a tremendous blessing. He's not gaining weight, but he seems to have stopped losing...which is also a blessing.

Thanks for checking on us.

Haircuts!

I am amazed how many people are shaving their heads in support of Steve. I'll add to this post as I receive more pictures.

May 27, 2016

Another day, another radiation treatment, another sick day. This sucks.

May 26, 2016

The photo on the top right of the screen is the original xray underneath the xray they took that morning.  They take a new xray every single day and compare it to the original and make any adjustments needed.  Yesterday the adjustment was 1mm.  They can control the table from the control station, so they can adjust it without even going back into the room where Steve is.  

You can see the 3 cameras in the top screen that show Steve in the room, so they can monitor everything from the control station.

In these 2 photos, you can see the lasers that they line up to Steve's markings.  They align him every morning.  They made some permanent tatoos and then he has some semi-permanent markings as well.  They line up both sides.  You can see how far over the table moves.  The base is on the left, but the table moves over to the right so the machine can rotate around underneath.  The Xrays go right through the bottom of the table.  They move to 9 different angles in order to try to minimize any side effects to the surrounding tissues.

This is what Steve goes through every morning. He's one tough cookie. I sure love that man. 

May 25, 2016

Happy birthday to my mother-in-law Jan. I hope they're having a special party in heaven today.

Today is also kindergarten graduation for this handsome dude.

I'll add to the update after radiation and bloodwork.

Met with the chemo doc, a little thrush in Steve's mouth. His temp was elevated 2 degrees. His white blood cells are 7000. His other numbers are diving as well. We'll be extra super careful at home.

Here is a picture of Steve this morning. 

Thanks for checking on us. 

PS This just happened. I cut off enough to donate. A big thank you to Angela for dropping everything to go with me on very short notice. 

May 24, 2016

Down a little more weight this morning. :( Otherwise hanging in there. Thanks for checking on us. We appreciate all the angels in our lives.

May 23, 2016

The chemo bag is off and Steve is experiencing new side effects....but he has a little more energy. Yesterday evening we went for a walk. He's still losing weight and that concerns me. He's down 12.5 pounds since May 12th. Yikes. Hopefully he will feel like eating again soon.

This picture was taken last Friday....right before they disconnected his chemo. The shirt was a gift from the Jones Family.  

While he was at the clinic getting disconnected, they also gave him a bag of fluid because his blood pressure was still under 100 even though the home health nurse gave him fluids in Thursday. 

May 21, 2016

The chemo pump is OFF!  Yay!  Steve has felt a little better today, but far from 100%.  He's experiencing a few more side effects, but overall managing well.  He still spent quite a bit of the day in bed, but not as much as the last few days.

May 20, 2016

Steve had 3 friends from work visit him this morning. It was so lovely for them to take the time to come. It was so good for him. He misses his friends.

Nausea has been about the same.  Caitlin is home from school with a horrible cough....sweet girl.

May 19, 2016

Steve slept a lot yesterday and paid for it last night...he was awake much of the night. He is still fighting nausea, but so far the only other side effect is exhaustion. Steve has lost 9 pounds since 5/12/16. That is not good.

Sadly, all 4 of our children are coughing and struggling with various symptoms of feeling sick. That is really stressing me out because Steve's immune system is about to take a dive. Please pray for our childrens' health as well as Steve's. Next week is the last week of school....I'm sure the stress of fixing grades and thinking about Steve is a lot for them to handle.

Thanks for checking on us.

May 18, 2016

Nausea continues. The compazine helped yesterday....it totally knocked him out, but he felt a little better. Savanna came and gave him a liter of fluid and his B12 shot. He was down pretty much all day. He was nauseated in the night, too, but he said we finally got his pain under control.

*Picture Preview*

We had our photos taken Sunday afternoon by my amazing sister, Angela. Here are a few previews she sent me.

May 17, 2016 (morning)

Yesterday treatment started.  Steve felt a sense of dread. As for me.....Steve's pain has been so bad (back to morphine to doubling to tripling the dose all in less than 10 days), I feel like anything that might eventually make him feel better.....well let's do it.

We started at UVRMC for blood work, the steroid and both chemos. We met Megan and Jeremy. They were lovely people who lightened the mood and helped distract us. I asked if I could include them in my prayers.

We went straight from there to AF hospital for radiation. It was hard to drive past Cove Point in Provo. I missed my sweet grandmother who passed just a few short weeks ago.

Steve has a "walk-med"...a pump that looks shockingly like a Walkman. It will pump 2 tsp of 5FU per hour into Steve for 96 hours.

He started sweating profusely as soon as they started the chemo and he's had several bouts of hiccups which doesn't help at all with the underlying nausea.

Kenneth had his soccer banquet last night...he had a fantastic season.  Then Darrel came and helped me fix the toilet.  I had futzed with it for over an hour and he fixed it in about 15 minutes.  I really appreciated his assistance.  What would I do if I didn't have help?  I'd never make it....

Right now Steve is having radiation #2. Thanks for checking in on him.

May 15, 2016

This has been a rough week. Steve's pain has been really high and the appointments he's had have really worn him out. Yesterday we had 3 soccer games and I worked on sprinkler repair in between games. Steve stayed in bed all day. It's uncomfortable for him to sit. We met some friends for dinner and it was so lovely, but he was really hurting by the time we got home.  I'm looking at pillows that might help him sit without so much pain.

May 13, 2016 (evening)

Steve spent most of the day after this morning's appointments in bed. His pain is not controlled very well. He is frustrated to be hurting so much. Keep the prayers coming....thank you.

May 13, 2016

Port-a-cath is in, and he's marked for radiation on Monday.  He has a power port...they can use it to draw blood, administer chemo, etc.  He's resting now in his bed.

May 12, 2016 (evening)

We met Dr. Clark. He is the radiation oncologist. He was very kind and patient with us. He did another exam...which was quite painful for Steve. He said radiation will be 6 weeks, not 7. He said the tumor is 7-8 cm, not 2-3. He feels like there's a 75% chance chemo and radiation will cure Steve. (Without surgery) He thinks we should meet with a genetic counselor. We made an appt for June 15th.

After that appt, we had "chemo class" with Jayme in Dr Chipman's office. It was about 40 min of information that took an hour and 40 minutes. By the time we left, Steve was REALLY hurting. We learned a lot about the side effects he's likely going to experience, and it's a LONG list. It's a bit overwhelming. We have several prescriptions to pick up and a list of over the counter meds we need to have on hand as well.

Tomorrow at 7am is the portacath insertion, then at 9:30 he has a special CT scan and radiation prep (they'll mark him).  Chemo starts at noon on Monday in Provo, then radiation at 3:30 in American Fork.

Steve is sad tonight because he wanted to enjoy this week, but he's been hurting so much...he hasn't been able to do much.

I am sad because I don't want to watch him suffer any more. It's so hard. But we need to fight together....and we will....starting tomorrow. Tonight we are sad.

May 12, 2016 (morning)

Steve had another rough night (pain).  It was also eventful as our fire detectors went off two times...we ordered all new ones this morning.  The nurse came and gave Steve his last IV (hopefully).  He's scheduled at 7am tomorrow to get a port.  Thank you for your love and support...keep the prayers coming.

For those wondering what a port is....here you go.

A port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port.