AG-221 Drug holds off Blood Transfusions for 3 weeks!

Todd Celebrates his 46th Birthday!

As of today, Monday, May 11, 2015, Todd has gone three weeks without a blood transfusion, thanks to the trial drug AG-221 that Todd has been taking now for 19 days.  His blood counts have not been in the normal range, but they have been significantly higher than they have been in months. 
On Monday, May 4, 2015, his white counts were up to 1.5; hemoglobin was at 9.0!; and his ANCs or neutrophils were at 1.2; and platelets at 53,000. 

We went to the Cleveland Clinic on Thursday, May 7, 2015 for his Day 15, Cycle 1 assessments.  We drove up on Wednesday and stayed at the Hope Lodge, sponsored by The American Cancer Society, for two nights and three days.

Our room, Hope Lodge, Cleveland, Ohio

This is the first time we have been able to stay there, since there is typically a waiting list for cancer patients and families that need to be there for treatment or transplant.  The best part of staying at the Hope Lodge, is that you can stay at NO COST.  You are required to clean-up after yourself, like wiping off your table in the dining area, removing your sheets, and straightening up your room, taking laundry down to the laundry area, change trash, etc.  We were eligible to stay after Todd's transplant last year, but decided not to because no children under the age of 18 are allowed to visit there. 

When we arrived on Wednesday night, volunteers had prepared a dinner for the tenants.  This was so nice; we didn't have to go out to eat, leaving us to go to bed early.  There are no TVs or food/drink in your room, so it's easy to go to bed early!  We had to be at the cancer center at 7:30 a.m. the next morning.  Blood work, urinalysis, and an EKG are done before Todd takes that morning's dose of AG-221, which is always taken around 9:00 a.m. every morning.  This also was the last day he could have the drug with food.  Starting Day 16, he will be required to fast two hours before taking the medication and for one hour after. 

Dining and Kitchen Hope Lodge

Since this was Day 15, the half-way point in the first cycle, Todd had ten hours of blood draws, more EKGs, and a bone marrow biopsy on the schedule.  This makes for a very tiring day.  There isn't much to do in between those hourly blood draws.  Todd tried to nap and I worked a puzzle.  We got lunch in one of the cafes in The Cleveland Clinic.  We wrapped up the day about 7:00 p.m. making it really almost a 12 hour day.  We were able to go to Little Italy (which is near the Hope Lodge) to eat dinner and to Presti's to have dessert.  We sat outside Presti's enjoying the beautiful warm weather (it's about time!), thanking God that Todd was healthy enough to do this (especially knowing our friend Rick lay in hospice).

Cream Puff and Crème brûlée

  We  hit the bed, did our chores in the morning, and ate breakfast at the Lodge prepared by volunteers, Helping Hands, before checking out and making the long drive back home to Beavercreek. 

I don't have the numbers from his counts that day, but they were holding steady, although they were not as high as that Monday before.  He did have a few blast cells in his bloodstream, which was a bit concerning, but the research nurse assured us that this is expected during treatment, since the medication often pushes the cells into the bloodstream.  His overall bilirubin was still high, but nothing they are concerned about.  The trial study research nurse assured us that they don't get concerned enough to change the dosage until they see levels up to 5 times higher than the normal level.  We all are anxious to see what the bone marrow biopsy results are.  Hopefully, we should get a preliminary report tomorrow or Wednesday. 

Todd with daughter Ellie

On Saturday, May 9, 2015, we celebrated Todd's 46th Birthday!  Unfortunately, we didn't get to celebrate as much as I would have liked. I woke up with a case of Vertigo, which necessitated a visit to the doctor.  I haven't been worth much since!  We went to Todd's mom's house for a birthday dinner and had a great visit.  We didn't really do much for Mother's Day either.  We had too much to do around the house to prepare it for listing and I still was suffering from the vertigo.

We received some sad news early Saturday morning that our friend Rick, from the transplant floor, lost his battle with Acute Myeloid Leukemia at 6:45 a.m. that morning.  They had moved him to Hospice in Ashland, Ohio, so he could be near to family and friends.  He had one good day while he was there: he was happy, ate food, went outside twice, and was able to visit with family.  Unfortunately, that was his last good day.  He was in terrible pain the following days and had to be medicated hourly.  Please pray for Lisa, his girlfriend and caregiver, who is deeply mourning his loss.  He had a 28 year-old son, who drove in from Colorado the day before he died, but didn't get to interact with him at that point.  He also leaves behind a mother and a brother. 

I have to admit that I was afraid that Todd wouldn't make it to this birthday last December/January.  His condition and prognosis was so poor then.  Thank God this trial drug is really making a difference.  Not only is he not needing transfusions, but he has energy to do things!

Family News
Our eldest daughter Abby finished her finals and moved out of her dorm room, wrapping up her freshman year at the University of Cincinnati.  Our middle child, Hannah Lewis, is finishing the senior year off.  Ellie, our youngest, finished Club Volleyball Season and Track.  She qualified to go to the GWOC Conference Final Track Meet, where she threw her personal best in shot put. 

God has answered prayers here too.  Abby found two jobs: one at Texas Roadhouse in Beavercreek as a hostess and the other at Steak and Shake as a server.  Hannah Lewis found a job at Graeter's Ice Cream and both are starting work soon. 

We continue to work hard on getting our house ready to sell.  We have been blessed with many friends and family who have volunteered to come over and help us complete some projects and clean up our house.  The real estate market here is very good right now, and we need to get it on the market as soon as possible.  No family going through the stress of cancer should have to worry about having another major upheaval like moving from their beloved family home, but we really don't feel we have another choice.  At this point, I think it will help cut our expenses tremendously and allow us to live more simply.  Please continue to pray for the right home for us to move into and for the right buyer to buy ours. 

Hannah Lewis has decided to accept an offer from The Columbus College of Art and Design in Columbus, Ohio.  We feel it is financially the best choice and we were impressed with their program.  Graduation and party will be at the end of the month. 

I hope my vertigo goes away soon.  I start my summer class June 8.  I can't imagine trying to move and do homework at the same time!  Haven't thought that far ahead; too much to do now. I need to finish this year if at all possible so I can start working full time.

What's next:
We go back up to Cleveland again this Thursday, May 14, 2015 for routine tests.  No long day!  They will check his blood counts and make sure that he doesn't a transfusion.  Hopefully, we will be able to discuss the bone the results, even though Todd is not scheduled to see his doctor this week.  The first cycle of the drug trial treatment ends on Wednesday, May 20 and we will go up for another long day of testing for Day 1, Cycle 2, on Thursday, May 21, 2015.

Thanks for your support.