Cute girls

Our neighbors, the Browns, have 3 little girls.  Scout and I were outside on Easter and I saw their middle girl, Eva, playing on the lawn.  She came over and said "hi" to Scout and I.  She likes to throw the ball for Scout with the "thrower thing".  Next she said, "how is Craig doing in the hospital?"  I was surprised she knew he had been in the hospital and I said, "he's home now, do you want to come say hi to him?".  She said ok and followed me into the kitchen where Craig was sitting watching TV.  She walked up to the side of him and patted him on the shoulder and said, "how are you feeling Craig?".  I about cried it was so cute.  They had a little conversation and then Eva left.  Craig and I were both blown away by the thoughtfulness and sweetness this little 5 year old displayed.  When I told her mom about this cute interaction, she said the girls pray for Craig every night!  She said that family members have been asking her "who's Craig?"  Thanks sweet neighbors.  We are surrounded by so many people that are thoughtful and kind and always offer to help with anything.  We really feel so lucky to live in this neighborhood for 20 years on May 1!

Blood sugar going up

This past weekend things have changed a little for the better we think.  Craig's blood sugars have been as high as 345!  He hasn't dropped below 200 all weekend.  He has been very tired all weekend and slept a lot so it could be also due to higher blood sugars.  The effects you feel for high blood sugar are a lot like the effects for low blood sugar.  He is having a harder time telling if he's low or high these days.  His abdomen still feels very distended and tender.

Today we emailed with Dr. Weis's nurse and she sent an order through to lower the delivery rate on the pump to 60 mLs per hour vs. 70 mLs per hour.  We'll see what that does.  We did try stopping the pump on Sunday for about an hour and Craig's blood sugar only dropped about 60 points.  That did cause the line to be a little sluggish because the dextrose is very sugary.  We have to be very careful in not reducing the dextrose too much as he drops fast when it is going down.  The pharmacy is sending out a new pump with the correct rate of delivery.  We can't change the rate on the pump ourselves and I guess they thought that would be easier than having a nurse come out.  When we change the bag tonight we'll hook up the new pump and see how it goes.  Wish us luck!

The other thing that happened last Friday is we showed up for the MRI and they didn't know what to do with his pump.  It can't go in the MRI because it has metal on it.  We talked about extending the line about 30 feet to leave the pump outside the door.  Craig couldn't be off it for the 45 minute MRI.  So he didn't get an MRI.  I'm really surprised they were so baffled by the pump.  I would think lots of MRIs are done on people with some sort of pump hooked up.  We'll see what the intervention radiologist wants to do.  They want to see the status of the tumors since it's been about 4 weeks since the last Y90 treatment to his liver.  We just want the tumors to stop producing so much insulin so he doesn't have to carry around a back pack of dextrose!  Maybe we're seeing some help with that after this weekend.

Catching up with the Joneses!

This past week Craig has been feeling a little better, less abdominal pain which is nice.  His energy level is still pretty low but he'll get stronger with time.  His blood sugars have stayed pretty steady, not really going up too much but did drop a little a few times this week.  The glucose drip is still going strong and Craig has been unpicking the side seams on his shirts to accommodate his PICC line.

We appreciate everyone who stops by to say hi and sends texts or emails.  Our good friend Jason and his son Jake have been mowing the lawn which is so very nice of them!  We are very lucky to have so many family members and friends who love us and show concern for us every day.  We love you all!

Speaking of family...Craig's Jones cousins came to say "hi" on Friday night.  Richard and Shelli, Stanton and Nancy, and Marshall and Cindy from California.  It was so much fun to be together and catch up.  Thanks for taking the time to stop by.  We love you guys!  And thanks for the pie!

Nausea

This past week Craig has been feeling more nausea and his abdomen feels very distended and tight.  We know there is inflammation with the radiation so that probably accounts for the tightness. Nausea is another side effect of the radiation.  He's been laying pretty low all week and sleeping quite a bit.  He did go to Dr Weis on Wed. for a check-in.  They drew blood on him from the extra line on his pic line and the numbers were way off.  Blood sugars were 1600!  I think the nurse who was drawing blood didn't clamp the dextrose line so all the labs were messed up.  The next day the home nurse drew the blood properly and the numbers were more normal.  His liver is holding pretty well with all this invasion with radiation.  We will wait a month and scan him to see what everything looks like before we do the 3rd treatment.  We need to make sure the liver is still functioning properly.

Our good friend, Dave O'Leary, invited us to the screening of "Le Ride" produced and starred in by Phil Keoghan (host of The Amazing Race).  It was a fundraiser for Huntsman Cancer Hospital.  Phil and a friend actually recreated the 1928 Tour de France riding a single speed bike over 3000 miles around the perimeter of France.  They made this documentary and are showing it in 12 cities across the country as fundraisers for local charities.  If you get a chance to see it, please do.  It was "amazing"!  Dave and his son Connor actually won the Amazing Race a few years ago.  Here's Craig holding his glucose "purse" pump.  I was happy he felt well enough to go out for a few hours.

Doing well at home!

Craig is doing very well at home.  We've got the dextrose bag changing procedure down.  We have to change the bag of sugar water every 24 hours and clean out his lines with saline and reset the pump to do it's job.  The nurse came over the weekend so we could change his pic line again (once a week) and she said I was doing ok on the bag changing procedure so she'll just need to come back next Sunday.  Craig did have a mishap with his bag in the middle of the night Fri. night.  He was getting something to eat and set the bag down on the counter and turned away from it and it fell to the ground and started making all sorts of beeps and noises.  He woke me up and we tried to reset it but we couldn't get it to work again and nothing was pumping into him.  We called the 24 hour homecare helpline and I told her he couldn't be without this or "he will die"!  I was a little panicked at the time! She had the pharmacist call us back and we tried a few things to fix it but it wouldn't stop beeping and telling us it had a problem with the cassette that fits on the bottom of the pump. Finally we decided to put a whole new bag on with a new cassette and it worked again!  That was a test of my skills, since it was 5 in the morning and I wasn't fully awake!  Since then he's been doing well and his blood sugar has stayed up all weekend!  It's definitely trending up which is a good sign the radiation is working to shut down the insulin producing tumors a little.  Hopefully we will slowly be able to reduce the glucose going into him but not quite yet.  We see Dr. Weis this week so we'll get an update on labs, etc.  Life is going pretty well and we hope it will get better for Craig soon.

Here's Craig modeling his latest outfit.  It's tough to have sleeves and an IV in your arm.  He squeezes the bag through the arm hole and it works!  He's definitely a fashion statement!

Maddie and Mitch in Paris!  We love living vicariously through them.