Friday

Today was another rough day for the Craiger.  He has no appetite and it's hard to keep up blood sugars with no food going in.  We finally convinced the doctors to just let him get the extra D50 dextrose to keep up his blood sugars so he doesn't have to worry about eating.  They want him to take in food obviously for the nutrients but today he really doesn't care.  He feels lousy, his whole abdomen is bloated and is under a lot of pressure.  He has pain on the right side of his liver where the procedure took place, his neck is hurting from laying in bed, and he is really sick of being in the hospital.  I got up there about 8:30 am and I didn't have much luck in cheering him up.  I just said "I'm sorry" a lot.  I feel so responsible for his well-being and feel protective of him.  I don't want him to suffer and feel like I'm betraying him if we do more than we agreed to do.  I know we just need to be patient and let the beads do their thing but we're not too patient after almost 3 weeks in the hospital.  We were hoping we'd see some results today with the blood sugars going up but he hovered around 100 or down to 60 most of the day even with 4 different boosts of glucose in addition to the constant D25 drip.  His uric acid is up as well as his potassium.  Both signs of tumors dying but both enzymes can cause problems.  Uric acid causes gout and kidney stones; both of which he's had and doesn't want to have again.  Potassium can be toxic in high levels and cause a heart attack.  His levels are not as high as they were last year so we think it will be ok but the doctors here are being cautious and limiting his potassium intake which limits foods available to him.  Chase has been up here most of the day too and is staying with him tonight so he can make sure he has a better night and keep him happier.  So thankful for our great kids.  Hopefully tomorrow is a better day.

Maddie and Mitch head back to Virginia

Sad day.  Maddie and Mitch flew back to Virginia today on a buddy pass, thanks to our good friend Cheryl.  They have a lot going on right now.  Mitch takes his Step One test next Thursday which is the culmination of the first two years of medical school.  It's a big test that determines what specialties will be available to you in residency.

The day after the test, they will fly to London for a 3 week Europe trip!  A great reward for their hard work in getting to this point.  We can't wait to hear about their travels through England, Belgium, France, and Spain.  Maddie will then need to decide between her acceptances at U of U, University of Maryland or VCU medical schools.

Chase is here with me until this weekend.  He is an awesome son and is great help with Craig.  They've been playing chess in the hospital room together.  We will miss having Maddie and Mitch around right now.  Love you kids so very much.  We are so proud of you all!

He's radioactive!

Craig made it through the first night and slept ok.  They kept him comfortable from pain with meds.  Today he is feeling ok but frustrated with mixed messages from the medical staff.  Yesterday the intervention radiologist who did the procedure said not to worry too much about his radiation.  Now today a PA said to stay away from his room but then our doctors, Dr Weis and Dr Whisenant (the attending doc), said it's not that big of deal.  The half-life of the radiation is 22 hours after the procedure which is this morning.  That means it's the most potent time right now and after that it diminishes by half every day and then runs out in 12 days.

His potassium is higher today so they have him on an EKG to monitor his heart.  He needs to be more restrictive of eating foods high in potassium (potatoes, bananas, beans, most vegetables...). Basically anything healthy is high in potassium and is hard on his heart.  Makes no sense!  We've dealt with that for awhile but now with the stress of the radiation they want to be extra careful.  To top this off he's getting a cold.  He doesn't need that right now.  I'm going up this afternoon to take him out in the sun for awhile.  It's a beautiful day.

Y-90 Radioembolization

It's Wednesday, March 15th and the procedure is over! It went well and the doctor was able to get the radioactive beads into the places he wanted to in about 1/3rd of his liver.  Now we wait to see how Craig's liver responds and if the tumors stop producing too much insulin.  They had to give him extra glucose again during the procedure. Last night in the night he required extra glucose too.  I think his anxiety about today added to his problems.  Last night, Maddie, Chase and I sat with him and tried to keep things calm as he was worrying about doing it and saying he wasn't sure he wanted to.  We watched "St.Vincent" the movie which was very good and provided a nice distraction.  The nurse and aide took good care of him in the night and we went home to sleep for a few hours.

We got here this morning about 7:30 am and they were ready to take him to radiology.  We followed him as they wheeled his bed through the maze to the U of U hospital.  It takes about 15 minutes to get there from Huntsman. We wished him well and they took him into the radiology suite.

We saw him after the procedure and he was not a happy camper.  The urinary catheter they had placed had leaked and he was sitting in pee.  He had to stay flat for a few hours after so we could do nothing to help him.  They scanned him to look at the beads and finally brought him to the room where his back was in pain again from laying flat.  The nurse worked hard to get the pain meds in him but he was very unhappy and using words I won't repeat here. He told me "never again" would he do this!  The pain meds kicked in and after about half an hour he was ready to get up and go to the bathroom and clean up.  We got him back in a clean bed and he fell asleep and is still pretty sleepy a few hours later. His blood sugar dropped below 60 again and they had to give him more 50% dextrose to get it up.  He's not eating anything much and is supposed to be on a clear diet although he enjoyed a few bites of an oatmeal cookie from Cowboy Grub!  I just ordered him some beef broth and hopefully he'll wake up enough to slurp some down.  Not too worried about the blood sugar right now as we have spiked it to 172 between glucose and prednisone!  They upped the drip on the glucose from 60ccs per hour to 75ccs. Chase helped him with the beef broth and a roll we snuck in and Maddie and I ate lunch on the patio.  Lovely day here in SLC!

Two weeks in the hospital is a lengthy amount of time.  Craig is handling it well but tires of the food and the scenery.  Although, if you're going to be in a hospital, Huntsman is the place to be!  If you haven't been here it is a very nice place. Thank you Jon Huntsman Sr.!  Very warm and inviting, nice furniture and finishes.  Not your sterile hospital at all. We enjoy visiting and the food is not bad.  The Bistro has some great paninis, salads, and sweet potato fries are a big favorite!  Afternoon Diet Coke and sweet potato fries make my day!  We love having visitors and now that the weather is improving the patio in the back is a fun place to take Craig on a little walk.

Maddie, Suzy and the Craiger

Todd (our nephew), Chase, Craig and Kathy (my sister)

Chase, Craig, Maddie, Mitch, Todd and Scout

Maddie cutting Craig's hair

Finished product!  Looking good Craiger!

 Maddie remodeled a t-shirt for Craig to wear in the hospital!  He has a PICC line on his right arm so he can't pull a t-shirt over his head.  She unpicked the whole side seam and put in Velcro buttons to attach it down the side.  Very ingenious Maddie!  Craig loves his yellow t-shirts!

These two handsome boys showed up yesterday.  Craig, Chase, Mason Brewer and Spencer Cannon.  Love these boys like our own!  Craig is wearing his yellow color ensemble: shirt, jacket and sunglasses!  Lookin' good!

Today our wonderful friend Jason (and Sherrie) visited and took Craig for a stroll outside.

Here's both of them!  Sherrie wore her yellow shirt to make Craig's day.  We so appreciate everyone's love and support.  The Thomases are truly like family.  We love you both!

Siblings are the best

Here's the three Doutre boys. David, Scott and Craig. Do you see the family resemblance?

Not to forget Craig's little sister Lisa!

Craig's brothers and sister are amazing!  We love them and appreciate all they do for us.  Their visits and support mean so much to Craig and I.

Hypoglycemia is an insatiable monster

Craig has been struggling to keep up his blood sugars for the last 5 months. We have met with many doctors and tried different medicines to try to help him. Everyone just keeps saying, "Eat more complex carbs!" So the poor guy has just been eating as often as possible but it's become hard to eat which seems impossible to say but it has become a chore.  Pop Tarts have been one of the things he's eaten a little of throughout the day and for some reason, they stay with him better than other things.  He's been eating pasta and bread and hamburgers and Lucky Charms.  They are a favorite!

We went to St. George last week to the home show and Craig made his way to the homes and snacked  on Pop Tarts and candy in between.  He did ok but always felt low or high.  Finally by Saturday, he was frustrated and done.  He couldn't eat enough to keep up his blood sugars and stuffing one more thing in his mouth was impossible.  We decided to get back to SLC and find help.  Luckily our friends Doug and Heidi Brewer were with us in St George and helped us clean the condo and kept track of us on the drive home.  We got home and talked to my doctor brother and decided to go to the ER.  We were just too worried about making it through the night.  You can go to sleep and never wake up.  The pressure was too much.

We went to the U of U hospital ER about 8 pm. When we checked in his blood sugar didn't register so it was under 60. Normal blood sugar is 80-120.  They gave him a slug of D50 dextrose and it would go up for about a half hour then drop again.  He ended up getting 4 slugs of dextrose in the 4 hours he was in the ER.  The doctor there said you'd have to eat about 50 candy bars a day to keep your blood sugars up. His tumors are secreting large amounts of insulin.  He's the opposite of a diabetic which is ironic since both of his sisters are diabetic.

They transferred him to Huntsman where he was admitted.  They put him in ICU because they would need to watch his blood sugars closely.  It was about 1 in the morning by the time he was in the room and we were able to settle down.  The put him on a constant drip of 20% dextrose. They pricked his finger every hour to make sure his blood sugar was around 100.  It would drop every once in awhile throughout the night and they would have to give him a slug of 50% dextrose again.  We were going to have to keep on top of this constantly.

On Monday, we called the kids to say they should find a flight to get here ASAP.  We didn't know if he would be able to sustain his blood sugar and if other complications would come up.  Chase got in about 6:30 that night from LA and Maddie and Mitch got here about 11:30 pm from Virginia. So nice to have them all here.

On Tuesday, the doctors came in and started talking about options.  The endocrinologist team wanted to increase the diazoxide to help with his blood sugar but we didn't feel like this would be enough.  The best way to stop the insulin production is to shut down the tumors.  There are a few ways to kill the tumors:  CAP-TEM a combination chemo pill that could take awhile to work, regular intravenous chemo, or Y90: radioactive beads they place in the liver.  After many up and down days last week, he decided that the Y90 is the best course of action.  He has struggled with the benefits of treatment and whether this will make enough difference in the insulin secretion.  He will be tethered to the glucose drip no matter what happens and this will require him to stay in the hospital while he undergoes treatment.

On Friday they took him to radiology for the "mapping" of his liver.  They placed a urinary catheter and it caused Craig a lot of pain because of his enlarged prostate.  The pain got so bad that he decided  to forego the procedure and wait til next week.  It was a tough day for him and we all felt unsure what was the best way to proceed.  There were too many issues today to make it feel like a good decision.

Over the weekend Craig, the kids and I spent a lot of time talking and weighing the options.  He continued to receive the life-saving glucose but even when he went off of it to take a shower for 10 minutes his blood sugar dropped below 60 and he crashed.  They then have to give him a slug of 50% dextrose to bring it back up.  So the idea of him going home is very unlikely for quire awhile.

He decided to go ahead and try the liver mapping again today and it went much more smoothly and we are now waiting to hear if everything looks good to proceed with the radiation. We should hear about that tomorrow.  The soonest we could do the procedure is next week.  They have to bring the radioactive beads in from Boston and they cost about $18,000 per treatment.