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. 

Trial Tomorrow

Tim just called and he got the final go ahead!  Trial starts tomorrow.  We will have to be in Houston by 8:15 tomorrow morning and they expect him to be in clinic 12-16 hours.  I'll have plenty of time to post more - maybe even some pics!

A Punch in the Gut

Tim will not start the trial drug tomorrow as planned.  Our day started with 45 shut down due to a wreck.  After finally arriving at MD Anderson, we spent four hours sitting around just to be told that his white blood cell count is too high to start the trial. It has to be 11 or under and his was 11.2 from the labs drawn on Friday.  So now we wait. They will schedule another round of labs and a new CT scan. Pray that these happen this week and he can start the drug next week.  By the way - his doctor is still in Greece and making all decisions from there.

Phase 1 Trial

As many of you have now heard, Tim has been approved and accepted as apart of a trial at MD Anderson.  Unlike the previous trials that we were waiting on, this particular drug is a Phase I trial.  What this means is that only a handful of people are involved and is often one of the first time that the drug is tried outside of a laboratory environment.  In Tim's case, the drug does not yet have a name.  It is simply known by the pharmaceutical company name and a number.

We will both be meeting with the doctor and our trial coordinator on Monday, but here's what we know at this time.  The drug (OBI-888) will be an infusion through his port or an IV once a week.  He will be required to be downtown for a total of four days a week each week - one day for the actual infusion, one day for blood work and doctor's appointments, and two other PK lab days.  At this time, we plan for him to travel back and forth so that he can spend as much time with Cooper and Abby in the evenings as possible.

We are both aware that Phase I trials are only the beginning stage of clinical trials and that there are no guarantees that this will work, but there doesn't seem to be anything that says that it will be a detriment or make things work.

I will update again Monday or Tuesday as we learn more.  Between now and then, pray

1. for this to be our Miracle.
2. for the kids as we are away periodically.
3. for safe travels on 45!

We Believe in Miracles

A young family who I know of, but don’t know personally, has allowed me to renew my faith in the Lord’s continued desire and ability to work miracles.  This family was not only facing infertility issues, but the husband was in desperate need of a liver transplant.  Just over six months ago, although through tragic circumstances, he received a liver transplant and the wife was pregnant with not one, but two, miracle babies.  Throughout their long ordeal, they sold shirts to help support their efforts that stated “expect miracles” and their blog is titled “Impatiently Waiting for our Miracle.”  Following their story has really impacted the way I pray to God and how I view our current circumstances.  (Abby - if you somehow read this or hear about, know that your and Reid’s story, as well as Clayton’s legacy, means much more than you can ever know.  I now wear my “expect miracles” t-shirt so much it’s almost threadbare.) I am borrowing their motto.  I am now “Impatiently Waiting for our Miracle,” but am doing my best to “expect” that the Lord wants that miracle for us.

Jeremiah 32:27 tells us that nothing is too hard for our Heavenly Father and we are desperately praying that He will work a miracle and heal Tim’s cancer - be it through modern medicine or Devine intervention.

My last post in May was just after we had met with the Center for Targeted Therapy and were anxiously waiting for an opening in a clinical trial.  Upon our return in June, we learned that there were still no openings, and the decision was made to go back on chemo in an effort to slow down the growth and spread of the cancer.  These three rounds have been quite eventful. Tim was hospitalized at MD Anderson downtown in mid June for an abscess near his primary tumor that had to be surgically removed. He said this was quite possibly the most painful thing he’s ever experienced.  He started the chemo immediately following that hospital stay and has remained pretty sick throughout these six weeks.  (We were able to take very short vacation at the beginning of July, but he spent the majority of it in the hotel while the kids and I tried to find some fun.)

On Monday, he had his routine scans, and yesterday we learned what we expected.  The cancer continues to grow in both size and number in all areas.  With that news, the decision was made to stop chemo as it wasn't doing any good and was drastically hindering his quality of life.  So now we pray! His next appointment is August 15 and we pray that there is a spot just for him in a trial and that it will work.  We pray that he has good days and is able to enjoy the kids, feel like he contributes to our home, and that he is able to function without pain.

We pray without doubt for a miracle!

Disappointed but Holding on to Hope

On Monday we traveled to the medical center to meet with Tim’s new doctor at MD Anderson’s Clinical Center for Targeted Therapies.  We spent almost five hours in clinic and learned a lot.

They offered us a clinical trial and 2 targeted therapies.  The clinical trial would be a random trial that there is no evidence that it would work.  It’s just a shot in the dark.

After the Dr. Tsomberidou explained the two targeted therapies, we signed consent for both of them.  The first one is T Cell therapy.  They drew labs today to see if Tim’s white blood cell type qualifies.  If it does he’ll have a biopsy of his liver tumor.  They will then extract white blood cells from him and engineer them to target the specific molecular makeup of his cancer.  The growing of these new cells would take 3-4 months.  After they are engineered in a lab, they could be infused through his port to fight the cancer.  (This will involve a 3-4 week hospital stay).

The other therapy is called IMPACT ii. They will take a second biopsy while they are getting the one for T cell.  They will then study 598 genes and the RNA  in them to determine what current chemo therapies would best target those specific genes.  This could be done through his port or pills.  Likely  week or bi weekly.

If he qualifies for T cell, he’ll do the impact ii while they engineer the new cells - basically as long as the cancer responds.   We wouldn’t go to T cell until the impact drugs stopped working.  The new T cells are good for two years in the lab so that’s good.  T cell has shown great results.  Some patients in complete remission.

We did the first part -bloodwork and started the financial approval process  - Monday.

FAST FORWARD TO TODAY - THURSDAY

The TCell nurse called Tim this morning to let him know that his white blood cell type is negative for the TCell therapy.  We are both disappointed but are still hopeful the IMPACT ii study finds something that will work. We anticipate he will have the biopsy next week.  Pray for easy recovery and precise hands of the doctor.

Strong Enough

Only the strength of the Lord Jesus Christ is carrying us through this season. Matthew West’s Strong Enough says 

You must
You must think I'm strong
To give me what I'm going through

Well, forgive me
Forgive me if I'm wrong
But this looks like more than I can do
On my own

I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
For the both of us

and we know that He is able.  

This week has been emotionally taxing.  We started the week with the regional golf tournament that didn’t end how we wanted, but know she’s got one more season ahead.  It ended with the loss of a sweet friend who was mom to one of Abby’s closest friends.  

So what was in the middle of the week?  Tim and I saw his oncologist on Wednesday to get the results of his latest scan. Once again, it didn’t go how we wanted, but we’ve had a few days to process and are putting all of our efforts in purposeful prayer.  Dr. Nelson used the words “mixed results.”  All of Tim's labs looked good and the tumors in his lungs are stable - some even showed some improvement.  However, the liver tumors and original rectal tumor all increased by significant margins.  Because of this, he will not be continuing this last chemotherapy drug Lonsurf.  What this means is they’ve exhausted all currently approved drugs and traditional therapies.  

This does NOT mean, however, that they’ve exhausted all possibilities for treatment.  His care is being transferred to the Center for Targeted Therapy at MD Anderson downtown to see if he qualifies for any clinical trials. We will have our first consultation Monday.  

Now what? You pray without doubt.  We pray without doubt.  Because James 1:6 tells us “But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.”

1.  Pray that he qualifies. 
2.  Pray that insurance agrees to cover their part. 
3.  Pray that whatever trial he is on works!
4.  Pray for tolerable side effects.  
5.  Pray for the strength that only the Lord can provide. 

One more request...pray comfort for our sweet friends the Bakers as Janice met Jesus face to face today after a long courageous battle against cancer.  She and her family are an inspiration to us walking this road called "Cancer Sucks"!


Strong Enough
https://youtu.be/knuHDPbE5es

Round 1 of Lonsurf Done...Round 2 On Hold

Round 1 of Lonsurf (oral chemo) was NOT good.  After 18 months of various treatments, side effects of chemo hit and they hit hard.  Nausea, vomiting, extreme fatigue, and excruciating pain made for rough days.  It is so hard to watch a grown man go through this and not be able to do anything to help or relieve the symptoms.  He's currently on a continuous release transdermal pain patch and an assortment of meds for nausea, vomiting, and other abdominal issues.  For the most part, this means he has good days and bad days - really, it's that he has some bearable moments on some days.  CHEMO IS POISON - it's meant to poison the cancer cells, but the fact is Tim is ingesting poison into his body everyday. 

His oncologist checked his blood counts today and his white counts are down, so the decision was made not to start the second round of Lonsurf tomorrow as scheduled.  This means we will continue to be extra diligent about germs and sicknesses going around.  If you see him wearing a mask, don't laugh.  He hates it, but I'm sticking to my guns on this one.  The current plan is bloodwork again next week and hopefully start the 2nd round on Thursday.  I guess we shall see.  I just have to hope that as bad as it has been, that maybe it's killing the cancer cells.

Next...

It seems like here lately, we have either good days or bad days.  On the good days, people might never know cancer has entered our lives.  But other days it’s as if we are just waiting for the next round of bad to hit - it feels as if Satan is attacking from every side.  On these days it is easy for Satan to take hold of our fears and insecurities and we all struggle to find joy.

Toward the end of this last round of the Stivarga, Tim began to experience more side effects as the toxicities built up in his system. He found himself extremely fatigued, coughing and vomiting blood, and continued to lose weight. Tim had a CT scan on Tuesday and saw his oncologist on Thursday for the results. The doctor felt like the fatigue, blood, and weight loss were all side effects of the Stivarga. But those side effects should subside, as the scans showed the Stivarga isn’t working.  While the initial tumor is stable, lesions in his liver and lungs continue to increase in size.  Some doubled in size in the last month.  This is most definitely not the news we wanted to hear.

So what’s next? There is one more approved option for treatment - Lonsurf - an oral chemo.  We are awaiting verification with the specialty pharmacy and anticipate receiving the first round shipment on Wednesday.  This means he’ll start on Thursday. Each cycle will consist of four pills in the morning and four pills at night for five days, be off for two days, back on for five days, and then off for sixteen days. As we understand it, side effects will be nausea, vomiting, fatigue, and possible hair loss - very similar to his previous chemo.  However, this drug’s number one side effect is low blood counts - that’s why he’ll be off 16 days in an attempt to help his numbers recover.  This means we expect him to be weaker than before and he’ll be more susceptible to any infections.

Please continue to pray for us as we walk through this next valley and offer us grace as we attempt to keep us all free of germs and spend time with each other.

Not much news...

It’s been a while since I last posted, and I kind of went through a phase where I just didn’t know what to say. Several people keep telling me I need to post some kind of update here it is.

We were able to enjoy Christmas with almost no indication that Tim has cancer.  The New Year, however, brought with it a nasty illness. Tim was admitted at MD Anderson where it was determined that he had contracted Norovirus. YUCK!  After a couple of days in isolation getting fluids, and an antibiotic to clear up a tad of pneumonia, he was released to continue recovery at home.

While in the hospital he had a CT scan and we saw his oncologist a couple of weeks ago for those results. The scan showed a few new lesions and some increase in size of a few, but it also showed what appears to be some changes in appearance as a result of his current drug.  The doctor wasn’t sure if the increases and new lesions were since starting Stivarga or if perhaps they were between chemo and the start of Stivarga.  He will do one more round of three weeks on and have another scan on his week off to check to see if it’s working. At this point we don’t expect to see anything go away, but just pray Stivarga stops any further growth.

For the most part, he’s had really good days.  We had even made plans with some friends for dinner tonight, but have had to postpone those.  He has started experiencing intense pain in his hip.  Our primary care Dr has prescribed a pain patch that is working to control the pain but has it’s own side effects that have knocked him down.

We are thankful for an almost normal life with more good days than bad.  Continue to pray for the Stivarga to work and no side effects.