Give Thanks, Even in the Darkest Days

You know, this has easily been the most difficult week of my entire life. But I am choosing to walk into the grief and the sadness with thankfulness. This is going to have to be a conscious effort on my part, but I know it is what is going to get me through.  Paul wrote to the church at Ephesus, “always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.” (5:20) He implores the Colossians to, “Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.” (3:15) 

Thank you, Lord, for the 29 years I had with Tim.  These are just a few of the things I’m thankful for. 

• Provider
• Hardly ever called repairman
• Put up with my bossiness but convinced me to see his way
• Rarely questioned me
• Was my sounding board
• The best dad
• Always told the kids he loved them
• Hugged them
• Let them see him cry
• Taught them to work hard
• Let them make mistakes
• Told them to suck it up 
• Didn’t tolerate ignorance
• Detested laziness
• Served others - sometimes at the expense of family or so I thought.  
• Fair
• Loyal to a fault
• Wanted for nothing 
• Set up all our technology with patience
• patience
• Observant
• Sense of humor like none other
• Silly
• LAUNDRY
• Fighter
• Taught me compassion
• Moved us back to Huntsville despite my wishes - because the Lord told him to
• Wrapping Christmas presents - I’m terrible and didn’t do it good enough to his liking
• Weed eating.  I still don’t know how. 

A New Focus - Making Each Day Count

Over the last week, Tim has experienced a rapid decline in his health and quality of life.  Cancer tumors have taken over both of his lungs and he is having extreme difficulty breathing.  Between this and the fact that he is eating almost nothing, he has no energy and is easily zapped.

Today we embarked on something I wish upon no one - Hospice Care. I say that because for us it means there are no more viable options to cure or slow down the progression of Tim's disease. Although I desperately wish we didn't have to go through this, I am so thankful for people who walk with us through it.  Our primary care doctor cried with us, prayed with us, and expedited paperwork to get us moving in the right direction.  The admissions nurse was most helpful and explained everything - for those of you who have experienced my "lists," you know this can be a daunting task. We already know that we are blessed with a hospice doctor who will give us the very best care - she's the entire reason we chose the hospice organization we did.  Let me just say, Hospice Care is a gift.  Those who choose to work in hospice are gifted and it's a gift to the patients and their families. 

This is awful and I hate every minute of it, but know that one day our tears will become fewer and we will be able to treasure the memories we have. For now, the four of us are spending as much time together as possible.  We laugh, we cry, and we just sit in silence together.  We know life goes on around us and I'm trying to keep the kids' schedules as normal as possible, for one day we will reenter everyday life with a new normal.

Pray specifically for Cooper and Abby as they live this horrible experience. They are my and Tim's biggest concern.

Home Sweet Home

I came home last night and the kids and I slept in a bit this morning.  We were planning to get there before the doctors made their rounds, but my brother called at 8:40 to tell me that they would be discharging Tim today.  After a long day of waiting, we finally made it home about 6:00pm. Praise the Lord! We continue to covet the many prayers coming our way.

Psalm 95:2-3 Let us come before him with thanksgiving and extol him with music and song. For the LORD is the great God, the great King above all gods.

What day is it?

Day 4 is all we know.  Neither of us knew the date or the day of the week when we woke up this morning.  I finally wrote it on the board.  It also dawned on us that we will “gain an hour” tomorrow night. Not real sure what to think about that.  You’ll understand more in a bit.

Discharge Date is Blank 😢

After a VERY LONG night, doctors made rounds early this morning.  We were up 8 times between 10pm and 6am. That’s 8 times in 8 hours!! I was dead on my feet! The way I calculated it is that if we gain an hour, that’s one more time we have to be up in the night, not one more hour of sleep. 😩

The primary care team feels his elevated WBC is related to the cancer as he has no other signs of infection.  They were clear that the goal to go home is still to get his numbers up - most importantly his RBC and his sodium.

Nephrology has put him on a limited fluid intake in an effort to keep from flushing any sodium and ordered an MRI of his brain for late this evening to see if there is anything they can see that might be causing the low sodium count.  (My math above is the liquid he has ingested today so far.)

As far as the RBC, he is currently getting a blood transfusion.  

Mel, Tim, and his new blood. 

Regardless of the length of time we’ve been here or will be here, we know we are blessed and are thankful for so many things.  We’ve had excellent care from his nurses (Mel above has been his day nurse these last few days), PCPs, doctors, and his case manager who has set up his oxygen at home already.  We have a really nice big room that is comfortable for both of us.  We are thankful for our friends who continue to check on us and pray for and with us. Our families have done everything we’ve needed and asked.  (My brother is coming to stay tonight so that I can go home and SLEEP 💤 and spend time with the kids. I told Tim that Andy better get the full experience of being up every hour!). Our kids have been real troopers through all of this. The Lord has blessed us by allowing us to be their parents.

The Power of Prayer

If you don’t believe in the power of prayer or God the Father, come see me! Last night and this morning I know that we had people from all Christian and Jewish faiths praying for Tim to be healed.  Today is a new day.  We prayed that the Lord would give the doctors wisdom and guidance, and it worked.  A cardiologist and pulmonologist came early this morning and determined that his heart issues were being triggered by the lungs.  Within an hour they had us moved downstairs, and they drained fluid from around his right lung. They told us they expected to get 200-400cc of fluid.  When they came to get me when it was over, they had 1300cc. That’s 5 1/2 cups or a little over a third of a gallon.  It was a lot! Almost immediately, he was able to breathe easier and his heart rate has returned to normal.  Jehova Rapha, the Lord who heals, is alive and well!

For from him and through him and for him are all things. To him be the glory forever! Amen. Romans 11:36

Sights, Sounds, & Thoughts in the ER

I’m sitting in ER Room 30 at MD Anderson in the medical center as I write this.  It’s nearly 11:00 pm and we’ve been here almost five hours.  I have no idea what is going on outside this room.  My world right now consists of watching the heart monitor and his oxygen levels and listening to the clicking of the IV pump as they furiously pump fluids in to Tim’s body. It’s occasionally interrupted by the crying of the child patient in the next room, but I can’t even be bothered by that because I know that sweet baby doesn’t want to be going through this any more than we do.

It’s been a crazy seven days and this is the first quiet time I’ve really had.  Last Monday we left home  at 4:30 am for a CT scan. Wednesday was his normal treatment day for the trial drug, so we saw the doctor before treatment for the scan results.  The scan showed that the tumors in his liver and lungs have grown by more than 20% in the last 60 days, which is their marker to determine that the trial is not working.

We followed up with his oncologist on Friday and were told there is currently no viable treatment option.  He encouraged us to work on getting Tim to eat more and build up some strength, and we would see the trial doctor again in November to determine if there were any trials available, and if he was strong enough to be admitted to one. (Yes, I know that’s a hot mess of a sentence.)

Over the past two weeks, Tim has been spending significantly more time sleeping and had begun to experience some shortness of breath.  This got worse over the weekend and when I got home today I loaded him up and brought him to the ER.  So now I sit.  We are currently waiting on the results of CT of his chest and will hopefully learn what is going on and what can be done.

We are all okay.  We know that the Lord is ultimately in control, but we are still holding out hope for a miracle.  We’ve prayed with our pastor and Tim’s closest  friends this evening, and we’ve prayed with each other. Please pray with us for healing, for strength, for comfort, for peace.  And please pray for the kids.

 But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. James 1:6

Round 1 Cycle 1

Today officially ended Round 1 of Cycle 1 of OBI-888. For those of you wanting to know more about exactly what OBI-888 is, here is an official description.

“A first in class monoclonal antibody cancer immunotherapy, OBI-888 targets Globo H, a glycolipid antigen expressed in up to 15 epithelial cancers.  Enrollment of patients suffering with locally advanced or metastatic solid tumours, including pancreatic, esophageal, gastric, breast, lung and colorectal cancers for the Phase 1 study of OBI-888 has commenced at the University of Texas M.D. Anderson Cancer Center.”

Tim is eligible for 13 28-day cycles.  The first cycle requires more visits than subsequent cycles, so we hope to get into a routine before long.  

He spent more time at MDA than he did at home.  After getting the news Monday that he needed further testing, his coordinator worked quickly to get everything scheduled.  He went back Wednesday for more bloodwork and another CT scan.  He then saw a doctor on Thursday and was given the go ahead to start on Friday.  

We left early Friday morning and checked into the CTRC at 8:00 am.  After getting settled in Room 11, two nurses spent 45 minutes trying to get a cannula into his arm for the many blood draws that would happen throughout the next 12 hours.  After Tim practically squeezed my fingers off, they decided he has too much scar tissue in his veins for a cannula to advance.  Luckily the doctor approved for them to switch and give him the OBI-888 through an IV and use his port for the blood draws.  

Next was an EKG and the first five vials of many throughout the day.  His nurse Elie started the infusion at 10:55 and it lasted exactly 90 minutes.  There was another blood draw when it finished, another one hour after, another four hours after, and another eight hours after.  Tim initially tolerated the infusion, but within a couple of hours he broke out in chills, shivering uncontrollably, and spiked a fever.  This was the most common side effect we were warned about and all of the nurses were prepared and reacted immediately.  

After getting his temp down, and the final blood draw of the day, we were released at just after 8:30.  Because he had to be back early the next morning got his 24 hour PK draw, we opted to stay at the Rotary House so that we could just walk back over. Round 1 was officially completed when we went back for his 72 hour PK this morning.  

Each 28 day cycle is made up of 4 infusions on Days 1, 8, 15, and 22.  They are working to get his infusions on Wednesdays so that he can see Coopers football games on Tuesdays, so they are shortening the rounds by one day this week and next.  His next infusion will be this Thursday and then he’ll go back next Wednesday for a check up and his third infusion.  

We don’t expect to get any updates until after Cycle 2 at the earliest.  Until then we continue to hold out HOPE for this to be our MIRACLE. Pray with us without doubt, as not to be tossed and blown like a wave of the sea.