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.