Wednesday, April 30, 2014

A good day

Derek is doing better still.  Oh, I have my moments when I wonder what's next and when, but he has walked down the hall halfway to the nurse desk and back, they have continued to increased his continuous tube feeding to 75 ml per hr.  I don't know what the goal is for hospital release, but I'll ask in the morning.

He is also still on the IV antibiotic.  Otherwise, he's been working on his laptop, enjoying visitors, and resting.  He's smiling more, asking for me to read the Bible to him, and talking about business opportunities.  These are all signs he is feeling better.  I'm guarding myself from thinking about going home too soon, but he told me his hope is by this weekend.

Again, we can't thank you enough for praying us through this trial.

Praising the Lord!!

Tuesday, April 29, 2014

Out of ICU

We've moved!  The Forest Park Building is our new home, room 3704.  Derek's been continuing to improve.  Thanks be to God!  He went for a short walk, is sitting up for a couple hours at a time, and has had the artery line and other monitors removed.  They are doing his tube feeds as a slow drip which is currently only up to 35 ml / hr.  (not enough to stay alive on)  Hopefully, this can continue to increase as his stomach begins working again as it should.  The leakage is very little at this rate.

Mayo Clinic has okayed him to restart the Pazoponib, and the hospital pharmacy here has okayed us to use the already mixed syringes we had at home, so tonight should be his first trial of that following the sepsis.  I pray it goes well and doesn't drop his white blood cell count again.

God's blessings be poured on all of you who care so much for Derek!

Sunday, April 27, 2014


I'm thankful to God that Derek's fever has broke, and his blood pressure continues to improve with less medicine to support it.  He slept a lot today, had some pain, but one of the joys of the day was how alert he was at times and talkative.  I saw some of his personality again, and even though the pain-relief drugs make him sleepy, he could have times of visiting. 

I rejoice with the four young men baptized in our church today, and we listened in to as much of the sermons as we could catch without doctors interrupting.  The main thought I gathered was nothing gets past God.  He knows and plans it all.  This lifted me up.

May you each be blessed for your care for us.

Saturday, April 26, 2014

Saturday update

Hello family and friends,

I wanted to update today after I talked with the resident.  The main doctor team is not here today.  Some positives for Derek's healing are:  the white blood cell count that was less than 1 yesterday is 8 today.  They just want to make sure it doesn't climb too high too fast.  The goal is 11.  He was able to be weaned off one of the meds that raises blood pressure, and the second one was decreased by almost half.  The goal is to get off of these meds as soon as he can hold his blood pressure up on his own.  His fever is still wanting to rage, and we are keeping it in check with tylenol.  He's had discomfort with so many tubes to try to arrange around him and find a good position.  They changed a couple dressings that caused him to yell out in pain.  That's hard to take!  The outputs from his body are working, but he cannot eat by tube or mouth yet.  The tube is still leaking enough, they don't want to risk putting anything in his stomach right now, so all meds are by IV.  At times, he rests comfortably, but he starts to squirm and needs help readjusting.  He's taking pain meds as needed.  There is a lactic acid blood test that shows how bad the infection is.  If it's over 4, that's bad.  It was over 5 yesterday, and now it's 2.  So, I think we are making headway, but as uncomfortable as he is and the fever makes me say we are not out of the woods yet. 

I've appreciated the support and prayers expressed, and I thank each of you for caring so much for us.  I'm overwhelmed and thankful.  I'm heartsick to see him suffer, and I'm blessed to have a front row seat to observe his Walk of Faith.

"Be ye also ready, therefore be ye also ready.  For in such an hour as ye think not, the Son of Man cometh."


Friday, April 25, 2014

Please pray for Derek

After we came home from Rochester Tuesday, Derek has had a rough time with the replaced stomach tube.  It had been leaking, causing pain off and on, and some stomach muscle spasms.  In addition to that, we noticed his right face was dropping noticeably more than usual.  We contacted the mayo clinic doctors/nurses. 

Stomach Tube:  We loosened the disk on the stomach tube, and it seemed to check out ok this morning.  It is still leaking and causing him pain.

Increased facial dropping:  We increased his dexamethasome back up to 4 mg/day which he was on back in November.  This helped the facial droop some, BUT it caused the old hiccup problem.  And these hiccups are hideous.  They come at about 40 per minute, and do not let up much at all.  Our only coping method was to decrease the dexamethasome again, because he reacts negatively to the hiccup-stopping meds we tried before.  Hiccups also irritate the stomach tube site.

All this is going on, and this morning about 9a, he says he has the chills.  About an hour later, he vomits, and so I start suspecting aspiration pneumonia or a negative effect from the new chemo which had caused nausea on the test dose (which he took a 2-month dose of it on Tuesday).  He developed a fever over the next couple of hours, and when our mayo doctor heard that, he said get him in to be seen.  We packed the van for a drive to mayo clinic, but when we got Derek off the couch to head to the van, he couldn't walk well at all, and began to vomit.  So, we decided Peoria OSF emergency room was where we needed to go.  Thanks to God for showing us clearly when the time came. 

When we arrived, they said his temperature was 104.9!  Also, his bloodcount was less than 1.  There's lots of you out there that know what that means more than I do.  To this point, we have never watched blood counts and never been concerned about Derek being more susceptible to stuff.  We've never had to.   So, needless to say they began putting lots of needles in and antibiotics, anti-nausea meds, fluids, and the x-rays were taken.  As of now (things change a lot in these situations), he has sepsis and pneumonia.  His blood pressure dropped to 78/50 and so they put a central line in for those type of meds and an artery line in his arm to continuously monitor blood pressure.  This is nerve-wracking to say the least. 

Derek has been ready to go home to heaven for so long, but when I'm actually watching him in a life-threatening situation, I marvel at his peace and long-suffering.  We have many tears for his pain, and prayers for God's mercy.  Please pray for God's will to be done.  I would love to have many more long pleasant days with Derek, but he's been fighting so long and so hard, and he's so worn down.  We love you and thank you for all you do!


Monday, April 21, 2014

Scan Results

I met with the Dr's today at Mayo's.  Overall the results are pretty good and better than I expected.  There might be growth in the lower skull but that is up for some question.  The spine is the same.  In the lungs, some spots have shrunk in size, some are a bit larger.  So overall the doctor seems pretty happy with how things are going.  We have never been given the expectation that any tumors would shrink, just staying the same and not growing is success.  The doctor before he left said "you are tough".  I replied that might be but I think it has something to do with all the people praying for us.  He said, "don't change anything"  He didn't want to admit what was responsible but the point is, don't quit praying now.

Regardless of the success of the current chemo, we are adding to it another medicine which has a time delayed release so they give it as a shot with time-span to coincide with my visits for MRI scans.  I got a test injection today that made me feel sick to my stomach, which is not a normal side effect.  Some anti-nausea medicine and I was feeling better.  So hopefully I can manage this stuff cause usually the side effects are low and it is really no more hastle for me.  This is the medicine that the ostreoscan said I was a candidate for.

A year has passed since my stomach tube was put in so we met with the nutritionist today.  Tomorrow morning they will swap this out to a balloon style which is more flush with the skin.  There is a little more risk of it coming out but I can replace it myself when it wears out.

They want me to come back in 2 months but this time are doing just the brain and C spine. So that means one MRI session instead of 2 and cuts the time down.

In summary, just keep praying and pray specifically that the new med does not make me too sick.  Keep praying that my pain is not too great.  So far meds have been keeping it under control.

Derek & Leann

Sunday, April 6, 2014


I turned 40 on Friday.  Above all I am thankful to still be here for my family.  I think when you view every day as a bonus, then it is easier to deal with getting older.  They had a lunch at work and then we had a party in the evening.  It brought back many memories to have my friends and families together.

Health wise, I have been doing fairly good.  Some days are up days, some are down.  In general my pain is somewhat better.  I tried totally going off the painkillers and couldn't totally do it but I am taking less than I was, sometimes just once a day.  My eating has not been as good lately but I am still able to eat some by mouth.  We are going back to Mayos in two weeks for routine scans.  The next medicine was approved by our insurance so I may start on that then, we'll see what the MRI scans show.  The next medicine is something they give by injection once a month,  I might do that alone or in combination with pazoponib which I take every night.  I have been able to go in to work almost full time.  Add that to my time at home thinking and doing email and it exceeds full time.

I heard an account which agrees with my personal experience.  Someone who is dealing with medical issues said he decided to open up and share more about what he was dealing with.  In the last few weeks he has gotten a good report and the doctors don't have an explanation for the improvement.  He credits the prayers of others.  I think I have said this before but we have to be reminded of a simple truth.  Others like to know specifically what they can pray for.  We are rewarded when we have the humility it takes as this is not human nature.  It aligns though with what the Bible teaches us.  It's not always easy to share but we need too.

Please pray that the pain I do have would continue to abate and for wisdom in a couple weeks to make any decisions we need to make.

Derek & Leann