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!