Hickman scheduled to be Removed on July 2, 2015

Todd with Hannah Lewis on graduation day

Todd with long-time friend Barry Wideman

It is hard to believe that it has been six weeks since Todd has needed a blood transfusion!  The AG-221 has been an answer to prayer!

We went up to Cleveland Clinic on Thursday, June 4, 2015, for Cycle 2, day 15 testing.  It was an good day.  Todd had his blood work drawn, an EKG done, and we met with his Transplant Doctor to discuss his progress.  Unfortunately, they were not able to get  his Hickman Central Catheter scheduled for removal on this visit, as previously hoped, but they did it scheduled for July 2, 2015, which will be Cycle 3, day 15, with limited testing.  They will put in a port under the skin on his left side of his chest instead.

The blood work was great!  Todd's hemoglobin climbed to 9.6; his white count to 2.59; his ANCs to 2.18; and his platelets (which have been lagging behind) to 43,000.  While only the ANCs are considered within the"normal range," the counts are still low overall, but they are so much better from where he was before he started the drug!

The last bone marrow biopsy was a little confusing, with the blasts showing at 5%.  Just 15 days prior, they were around 0-1%.  The doctor reassured us that there was nothing to be worried about.  Todd's counts are not necessarily increasing, but rather, this is typical of taking a sample. It can be off by a few percent each time.  She still considers the disease as "stable" and Todd having a "hemeotological response" in the blood with the drug.  Todd's EKG looked normal, and the only side-effects have been nausea, some fatigue, and high bilirubin which has caused some yellowing of his eyes.  It is hard to determine whether the fatigue is actually from the drug or from his disease.  Although his hemoglobin is high enough for him not to need a transfusion, it is still below normal and can cause fatigue.

He did lose more weight (a few pounds) from the last visit, which concerns me.  The doctor was mildly concerned and discussed his nausea and eating habits.  They are not worried, but reassured him that he can eat whatever sounds good to him.  Since his transplant he has lost over 30 pounds and a lot of muscle mass.   

We were blessed enough to be able to stay at the Hope Lodge there in Cleveland, which helps cut our expenses tremendously.  The staff and facilities are awesome, but we have had a few issues with some of the other longer staying occupants who are not as happy with anyone new disrupting their "authority" or routine.  Which is really a shame.

Personal notes:
We had a successful graduation party, although the weather was cold, windy, and a bit wet.  It is hard to believe we have two out of high school and one going into high school!

We've had our house on the market now for about two weeks.  We have lowered the price once to create additional interest and show that we are motivated to sell.  We have had a few showings, but I find myself anxious with the waiting.  Waiting for calls, waiting for showings, waiting to sell.  We can't look for a new place without selling our house.  All we can do is pray and wait.  God has answered prayers in so many other ways, I know this one will be answered in his way and timing too.

Ellie leaves for her 8th grade trip to Washington DC in the morning.  We are blessed that she received a partial scholarship by the travel company, World Strides to be able to go.  We also received word from the Cleveland Clinic Foundation that they are going to pick up a few more months of Todd's COBRA health insurance premiums.  I think this was facilitated by a social worker who came into Todd's room on a prior visit, asking how we were doing, and what needs we had. 

We are so grateful for all our blessing and appreciate your prayers and support as always. 

Hematological Response: End of Cycle 1 of AG-221

Todd reached a major milestone this past week, where he completed 28 days or the First Cycle of the trial drug study for AG-221.  The Research Team kicked-off Day 1, Cycle 2, the following day, Thursday, May 21, 2015 with the standard 10 hours of blood draws, EKG, and another bone marrow biopsy at the Cleveland Clinic's Taussig Cancer Center. 

The results at the end of just one cycle on the trial drug have been amazing!  His blood counts have come up enough to go 4 weeks without needing a blood transfusion and his immune system has come up to allow him to go off antibiotics, get off the neutropenic diet, and live a little less restrictively for fear of getting an infection that could be deadly.  It is also allowed the team to schedule to have his Hickman Central Catheter removed on the next visit.  They have been wanting to take it out for fear of it causing an infection, but his immune system has been too low.  Now, however, they feel it is strong enough to handle having the Hickman removed and having a port put in on the other side of his chest.  His platelets are still under the recommended 50,000 for having this procedure done, but they will give him a unit of platelets during the procedure to help counteract any possible bleeding complications.  If you have never seen someone with a port, it is a button-sized device that goes into a central vein, under the skin.  So, when they need to draw blood, or give him an injection, the needle will go through the skin.  Here is a brief overview of catheters and ports.  He will have a catheter removed and an port put in:  Port information.

Just to give you a comparison of how his counts have improved here is the 4 week difference:
                                4/20      4/30      5/7      5/14     5/21/15
Hemoglobin:              7.6       8.5       8.7       8.6         9.0  (low still: normal range 13.0 min.)
White:                         .47       .83     1.47     2.03      2.92 (low still; normal range 3.7 min.)
ANCs/Neutrophils:     00        .53     1.07     1.66      2.39 (now falls in lower end of normal)
Platelets: (1000s)         34        41     38         36         35   (Low still normal 150,000 min,)
Bilirubin(total):            n/a      3.8     3.9       3.0        2.6  (want to drop; normal 0.0-1.5)


This is amazing!  In just one cycle, he has seen this much improvement! You can see how he is no longer  Neutropenic (when ANCs/neutrophils are .50 or lower) or no longer needs Transfusions (thresholds for Todd was 8.0 or lower). The elevated bilirubin is caused by the drug, however, you can see the numbers are dropping as his body adjusts better to the medication.  The Indirect bilirubin numbers are fine and the research team is not worried about the elevated total bilirubin, as it would take his number to be 5x the normal or at 7.5 before they would adjust the dosage or make a change in his trial protocol.  The only side effect of the higher bilirubin has been some jaundice, especially in his eyes. 

The best news is, that the first bone marrow biopsy from Day 15, cycle 1, showed a normal range of blast cells in the bone marrow itself.  There was still signs of diseased cell (ringed blasts), but the drug is helping to block the mutation to allow his blood cells to mature, leaving less blast cells in the marrow.  There is also still chromosomal abnormalities found in the cytogenics results, which still show he is having the 5q deletion. 

He had a second bone marrow biopsy done on Day 1, Cycle 2, but we have not received any results back from those yet.  I asked the doctor if he would be considered to show a "response" or if they could say he was in remission, but she made it clear that Todd still has a way to go to ever say he would be in remission.  Under the drug protocol, there are established guidelines for what constitutes a "partial response,"  a "complete response," or "remission."  She stated that Todd would always have the diagnosis of MDS, actually relapsed MDS, that it would never go away.  The only "curative" treatment was the transplant, and that failed.  So, he cannot be "cured" of the disease at this time, but who is to say that there won't be a new curative treatment in the future.  Research and technology are moving so fast in this field, that anything can change in a year.  For example, this drug and the trials were not available a year ago! 

I guess it would take not seeing any blast cells, any chromosomal deletions, and for his counts to be at a certain level before they can use the word remission.  While he is not there yet, it is early in the treatment, and I feel confident that he can at least reach the level of a partial response soon. 

The doctor will not categorize the results as anything but they can see that the drug has produced a "hematological response.*"  

I'm not sure if his blood counts will ever be "normal" again, but I think they can be close to it, or maybe on the low side of normal someday.  In the meantime, he will still suffer from fatigue, some weakness, with a limited lifestyle or activity level, but he has already been forced to adjust to this. 

I honestly feel so relieved that I don't doubt that he is getting better!  While most of his counts are still below normal, we have already achieved the two main goals Dr. Stein, from Memorial Sloan Kettering Cancer Center in New York City, had in mind for Todd:  to lessen his transfusions (which were 6-12 days apart) or to NOT BE transfusion dependent, and to NOT BE neutropenic.  The idea that they now hope to remove his Hickman catheter and put in a port is wonderful!  That means I won't have to flush his catheter lumen's every night, change his bandage and line caps once a week!  He will only need to have the port flushed monthly.  I'm not sure if that is something I will have to do, or whether a nurse will do it at his appointments.  He will also be able to shower without covering it, and hopefully swim this summer!

Since he has he not been transfusion dependent, we haven't had to run to the local oncologist's office once or twice a week to have a CBC drawn to check his blood counts.  That's a lot less running! 

The first cycle of the study was a bit demanding on our schedule, having to go to Cleveland Clinic every week, and sometimes stay for 3 days, but that is behind us now.  With the start of the second cycle, we only have to be there on Day 1, which we just did on May 21, and on Day 15 for a short visit!  The same goes for Cycle 3.  Day 1 will be a long 10-12 hour day (which will be mean a 3 day stay) and then he only has a short visit again on Day 15.  After Cycle 3, he only has to go on the first day of each cycle from there on out! These days will be the long 10-12 days again, but we might be able to resume a more "normal" routine when all of these appointments are no longer necessary. All this is assuming that the drug continues to help and Todd responds positively to it, but I feel confident it will! 

Todd began seeing a physical therapist finally for his shoulder stiffness and pain.  It has helped some, but he still limited in using it.  Our chiropractor had seen Todd before the transplant and then after, was in shock seeing how much muscle mass Todd has lost all over, but especially in his arm and shoulder.  He felt that without the lack of muscle to help support the shoulder, it was making it harder for Todd to use it. Please continue to pray he will find some relief from this pain.  It does inhibit his activity quite a bit and he can only take prescription pain medications, instead of any ibuprofen, and he doesn't like to take them and they don't seem to help as much as he would like.  It wouldn't hurt if he could put on some weight or at least stop loosing it.

So, his next visit at the Cleveland Clinic will be June 4, 2015.  

Family News
Wow, a lot has happened here too!  Hannah Lewis graduates this Saturday!  We've had multiple year-end award assemblies, choir concerts, etc. to attend.  I have been cleaning like mad, with the help of my many good friends and family (Pam, Vicki, Darsie, Dana, Lynda, Mom)!  Two of Todd's friends from work came over and painted one of the garages for him (thanks Chris and Pat). 

We were able to put our house on the market for sale this past week.  It is all bittersweet.  We know it has to go, but we will be sad to leave it as it has been a labor of love building it, finishing it, and living in it these past 12 years.  Please pray for a buyer, for financing so we can purchase a smaller home, and for the entire selling/buying/moving process.

Two praises regarding finishing my Master Degree: I was able to find a practicum at the University of Dayton in the Library/Archives department starting this fall. I have to submit a lot of paperwork to Kent State in the new few weeks to get it ready, but hopefully everything will work out so I can begin in the fall.  I start my summer class and workshop next month!  So, I am hoping I will be able to juggle everything once that starts.  Second, I was able to get into the class I needed for the fall semester.  I was originally on a wait list, but Kent State contacted me last week, offering me an opening in the class!  I needed to take this class to graduate this fall, so now I can apply to graduate in December. 


It's been an emotional roller coaster this past year.  I crave a "normal" life whatever that is!  Change has been the only consistent thing in our lives.  It would be nice to be able to settle down into a mundane routine and stay in one place for awhile.  With our family having to be split-up last fall, with Todd and I in Cleveland, Abby in Cincinnati, Hannah Lewis and Ellie here with my mom, and now having to move from our house into somewhere new, it is a bit traumatic for all of us.  I know it does no good to worry about the timing, and wondering who will buy our house and when, or where we will move and when, but I still feel there is a sense of dread or a cloud that hangs over me.  It is hard to convenience myself that it is all somehow punishment for some reason.  If it is not the cancer and Todd's health, or the finances, then it is the uncertainty of "home" that seems to hang over us. For me, it is emotionally fatiguing, this roller coaster ride we find ourselves on.  I just want the ride to stop, so I can get off, sit down, and rest a while.  I'm still suffering from vertigo (literally), and I wonder why?  Life and this world keeps spinning, and I am trying to keep upright, without falling, despite all the obstacles. 

I gave the entire family this little pep talk last year about how God was going to use Dad's cancer, us going to Cleveland, Abby going to college Cincinnati, and Ellie and Hannah Lewis staying here with grandma, to GROW AND STRETCH US in ways we couldn't imagine!  I had forgotten about this until someone reminded me of it recently and gave me my own pep talk in return!  I know that God continues to mold us, refine us, strengthen us, give us insight, compassion, empathy, make us lean, teach us that living with less is more, help us focus on what is really important, and that home, wherever it will be, will be us together as family.  But growing and stretching usually doesn't come without a bit of pain!

Thanks for your love and support.  We appreciate your prayers and generosity, which continues to amaze and bless us!

Reference:
* According to the National CML Society, http://www.nationalcmlsociety.org/living-cml/response
 Hematological Response is a normalization of the blood counts, particularly white blood cell counts. This is the first noticeable indicator that treatment is beginning to work, though not necessarily in the bone marrow. The response can be partial HR (reduction in white cells,but not down to normal range) or complete CHR (white blood count at or below approximately 12,000 white cells/microliter).

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.

Seeing Early Results within 5 Days of Starting Trial Drug

Todd holds up the AG-221 Trial Study Drug

We are so excited that Todd finally got to start the Trial Drug AG-221 on Monday, April 20, 2015, at the Cleveland Clinic. We had to be there from Sunday night April 19, through Thursday morning, April 23.  My mom graciously stayed with the kids.  Monday was a long day, beginning with testing at 7:15 a.m.  He took the first dose of the drug:  200 mg or 2- 100 mg tablets with food  around 9:00 a.m. with hourly tests of EKGs and blood draws for 10 hours beginning shortly after.  His blood counts were low that day with his hemoglobin at 7.6; whites .47; platelets 34,000; and ANCs/neutrophils too low to count.  So, once they checked the protocol to make sure it was alright to give him blood during the testing, they ordered him two units of blood to be transfused while he was there.  We finished that day around 7:00 p.m.

The next morning, Tuesday, April 21, we had to be there around 8:30 a.m. for lab work and testing.  No drug was given this day.  The protocol called for one dose on Day -3, which was Monday, then to do testing and evaluations for the next 72 hours.  So, we had to go back Wednesday for another easy day of morning testing and no medication.  Thursday, April 22, 2015 (my mom's birthday!) was considered the official first day or Day 1 of the trial drug.  It too was a relatively easy day.  We were able to finish up early and head home.  For all the months and preparation leading up to beginning the trial, three out of the four days we were relatively uneventful!

Overall, we are pleased with how everything went at Cleveland Clinic.  Todd got to see his bone marrow transplant doctor on Monday and Thursday.  I love the research nurses Ashley, Samantha, and Chad.  They were very good to us.  The Cleveland Clinic was able to fund our hotel stay for this initial visit at a nearby hotel between downtown Cleveland and the Clinic; mainly because we were on the waiting list for the Hope Lodge, but were unable to get in.   We were able to submit travel expenses including Todd's meals and gas/mileage for reimbursement.  On all other trips, we have to pay for our hotel stay, unless a room becomes available at the Hope Lodge, but we can submit those expenses also.  God continues to provide for us!

While we were there, we visited our friend Rick, from the Transplant Floor.  He had been admitted to the Leukemia floor trying to fight his relapsed AML since March.  The chemo has taken the toll on him.  His hands and feet were peeling and yellow from jaundice.  He wasn't as responsive like normal. He has a bowel blockage and hasn't been able to eat solid foods; unfortunately, he can't control his bowels at all, they believe that is also a side-effect of the additional chemo.  He has to have platelets and blood transfusions every day!  They are also giving him potassium for his brain.
As a follow-up, I talked his wife on Wednesday, April 29, and they were in the process of moving him to hospice closer to home.  The doctor said he may have 2 weeks to 2 months to live.  He has 50% blast cells in his blood stream, and does not have the same gene mutation Todd does, which makes him ineligible for AG221 drug study.  Please pray for him in his last days and for his family as they go through this difficult time.  

Todd had to have routine blood work done on the following Monday, April 27, 2015.  We were afraid he was going to need a transfusion, because he had been feeling fatigued the day before and spent most of the day in the bed resting.  To our surprise, his numbers were good!  He needed no transfusion since his hemoglobin count was at 8.8. His white count went up to 1.0 which hasn't been that high in weeks or months! His neutrophils were still low at .700, but at least he was above the neutropenia threshold of .500 and his platelets were at 60,000! We were praising God for these very early results. He had only taken 5 doses of the trial drug by this day and we want to believe that the increase was the result of the medication beginning to work.

The weekend we got back home, we started working on the house again, trying to get it ready to sell.  We both worked a little too hard and too much, but not without help.  That day, I had my good friend Dana come over and she went to work on helping clean out my bedroom closet, so it didn't look cramped or cluttered.  We got a lot done! Monday, I spent finishing cleaning the closet and taping up boxes and moving them out to the garage with the help of my good friend Darsie.  Tuesday, we were blessed with the help of our great friends Chris and Lynda; the guys worked outside in the yard and Lynda and I cleaned and straightened up the Piano Room and Dining Room.  We got so much done! 

In addition to working on the house, we have been selling our furniture and other items as we go.  I take photos and then we post the items online and usually spend the next day or two taking emails, texts, calls, and arranging pick-up times.  This has been a good strategy, since we are getting things removed now before showing the house and before I attempt a garage sale (which is so much work in relation to how little people are willing to pay). 

By Wednesday we needed a break! We had to pack for our trip to The Cleveland Clinic, but at least I was able to help Ellie pack up some keepsakes in her room before leaving late that night.   Thanks to Todd's mom Ann and our former neighbors Joni and Raymond, for all the boxes and packing materials!

We arrived around in Cleveland around 11 pm last night and hit the bed, since we had to be at the hospital the this morning, Thursday, April 30 before 7:30 a.m.  The day's appointments went well.  Todd saw his doctor and the research nurses got busy asking their questions, doing the EKG and blood work for the trial study.  He was scheduled to have a transfusion today if his hemoglobin was below 8.5, but we learned that it was at exactly 8.5, so everyone was in agreement that since Todd was feeling pretty good, they were going to hold off on transfusing him for today.  The rest of his numbers were down slightly, his whites went down to .830; his platelets down to 41,000; and the nurse contacted us later with the other numbers, namely his neutrophils, which have dropped to .530 making his nearly neutropenic again.

What's Next?
He is scheduled for routine blood work every Monday at the local oncologist's office, so we will see how his counts are on Monday, May 4, 2015.  If he needs transfused, the local oncologist will make arrangements for him at Miami Valley  Hospital before his next appointment at the Cleveland Clinic on Thursday, May 7, 2015.  This is going to be another long day of tests, because it is Day 15, or about the half-way point of the Cycle 1 of his drug trial.  In addition to hourly blood draws for 10 hours, he will have EKGs, and a bone marrow biopsy (his 15th? I think, he has had so many, I have lost count). They have also scheduled a treatment appointment for transfusion, if he hasn't had one by then and needs one. The protocol of taking the drug with food will also change at this point.  Instead, he will have to fast for 2 hours before taking his scheduled dose at 9:00 a.m. and then wait for 1 hour after taking it before he can eat.

The only concern so far is his bilirubin levels, which were elevated, however, even this is expected in the beginning.  The research nurse assured me that these levels typically come down as time goes on.  They are not concerned about these levels because his liver numbers and the direct bilirubin numbers both looked good.  They only thing that I noticed today, was a slight yellowing in the corners of his eyes; the nurse agreed that there was a slight bit of yellowing, but that this is a known side-effect of the drug.  If it gets too high, they will interrupt the dose or decrease it, but that his current levels are no where near needing any of those adjustments now.

On a personal note, we will continue to work on getting our house ready to sell.  Which means, I will be enlisting another round of volunteers to help me inside get things de-cluttered and cleaned for showing.  Todd won't need much more help outdoors, but mainly indoors, with a bit of painting projects, changing light bulbs inside and outside (some days I don't want him on a ladder), and repairing a bit of drywall.  Tomorrow, I'm going to help our oldest daughter Abby finish moving things out of her dorm room.  I can't believe she is done with her Freshman Year of college already!  I need to work on preparing a graduation party for Hannah Lewis, including buying decorations, ordering food, etc.  Ellie's last club volleyball tournament is this Saturday: yahoo!  And track season should be ending soon too.

Please pray: 

• That we can get our house on the market in about two weeks.  The market is still hot and we can't really buy or write a contract on anything til we have ours sold.
• That Abby and Hannah Lewis find jobs soon.
• That I can get get the majority of packing and selling done before I start summer classes in June.  I also have to turn in my application for a fall practicum by June 6 or so, and I don't have one lined up yet.  If I can't do this, I won't be able to graduate by the end of the year. 
• Continued improvement of Todd's health and stamina; namely, that the drug will begin to help his counts go up and the need for transfusions go down.
• Family issues and dynamics as we continue to undergo weekly family counseling
• That the transition of moving to go smoothly.  That God would open and close doors: find the right buyer for our house and the right house for us to buy.  We have been struggling to find  a house that isn't too big or too small that will give us enough financial breathing room while Todd is on disability and I finish my degree.  The physical demands of moving and the emotions of giving up our home and most of our belongings is traumatic, even though we understand they are just material.  This is the only home Ellie has really known and both of her siblings will be gone at college this fall; all this will be a big adjustment for her. 

As you can tell, there is just so much uncertainty in our future.  We are doing our best to take things a day at a time, but with such upheavals and the constant concern for Todd's health, me and the kids are feeling a bit anxious and emotional. (Not Todd, he is in a different place than we are!). We understand the wisdom of asking God to give us just what we need for that day, and not to worry or be anxious about everything else, but we need reminded!  We also understand that we need to take these feelings to God through prayer and that he will supply all of our needs.  Please pray with us.

As always, we appreciate your love and outpouring of concern and support.  It means so much, to see our friends and family helping us through all of this day by day.

Drug Study to Start at Cleveland Clinic on Monday, April 20, 2015!

Well, I would lie if I didn't tell you that I finally feel at peace and excited for Todd to start the AG-221 Trial Drug Study at the Cleveland Clinic on Monday, April 20, 2015!  I have personally been so invested in getting Todd started on this drug now for months, that it looks like it is finally going to happen.  I'm so excited because I really feel like we have HOPE for Todd in taking the drug.   Where the standard of treatment available to patients like Todd, with relapsed MDS or AML, being a second transplant with a low success rate, this drug provides a new and hopefully a better option. I really believe that it is going to improve his current health and extend his life. 

There has been so much uncertainty about whether we were going to proceed with the trial study in New York at Memorial Sloan Kettering or at the Cleveland Clinic.  I have been on the phone so much the last few weeks, trying to find out our best options and to check on Cleveland Clinic's progress to get the study opened there in time to treat Todd.  He had a 28-day window to start treatment once the screening process was initiated in New York on March 24, 2015, with the deadline for starting without complete re-screening being April 21, 2015.  Unfortunately, some of the screening tests will have to redone at the Cleveland Clinic this Wednesday, April 15, namely the Echocardiogram, EKG, and blood work.  We are happy though that he will not have to repeat the bone marrow biopsy.  We have learned that each Trial Study location site has their own "IRB" or Institute Review Board, comprised of physicians and lay people, who have to review and approve all screenings, protocols, medications, and procedures to ensure safety for patients and legal and ethical parameters for the hospital/institution.  Cleveland's IRB wanted to have the above-mentioned tests redone at their location.  These tests are not invasive, so Todd did not mind repeating them for the convenience of doing the study in Cleveland. 

I was all about him going to Memorial Sloan Kettering and having Dr. Stein as his physician.  I absolutely hold both in the highest regard!  Dr. Stein and his staff are so personable and professional, that if it was my decision alone, I would go there!  However, it isn't; it is Todd's decision.  He feels most comfortable being closer to home, within driving distance, which I agree might be better in the long run.  It may mean less overnight stays. 

So, here is the run down, as far I as know right now.  We go to Cleveland Clinic tomorrow for repeat testing, to sign the consent forms, to register for the study, and to meet with his BMT doctor, who has signed-up to be a co-investigator for the study and requested to continue to be in charge of Todd's care (which we agreed to).

We will return to the Cleveland Clinic next Monday, to begin the actual study.  Depending on the "co-hort" or randomized study regimen that he is assigned to, we may have to stay for the next few days or return that week.  Some of the regimens include three days or Day -3, -2, -1 prior to treatment on Day 1.  Others start at day 1.  Of the regimens, he will likely be assigned to the Dose Escalation Phase, where he will either take the medication on an empty stomach or with food to test which works better.  He will likely be started off taking 100 mg or 150 mg twice daily.  We won't know for sure until he is registered and then assigned a co-hort. 

The drug is taken in cycles of 28 days.  Cycle 1, Day 1 protocol calls for one blood draw every hour for 10 hours along with other routine tests.  With such a long day, we will go up Sunday night so we can be at the Taussig Cancer Center at the Cleveland Clinic for the first blood draw around 7:00 a.m.!  This means the last blood draw will be at 7:00 p.m.  Depending on how we feel, we will either drive home that night or stay another night to rest up before driving the 3 1/2 hours home.  If he is assigned to the cohort that begins on a Day-3, he will do the 10 hour blood draws on that day, and then return on Day 1 to take the medication and have a different set of assessments done. 

After this, he will be given the medication to take home.  We will keep a detailed diary of his medication times and any side effects.  We will return again on Days 8, 15, and 22 for the first cycle.  On Days 8 and 22, he will only have routine blood work and assessments, so we will likely be able to drive up and back in one day.  Day 15, however, will be another one of those long 10 hour blood draw days, requiring us to likely stay overnight at least one night. 

At the end of the first Cycle, Day 28, Todd will return and complete all the same tests performed during his screening (EKG, Echo, urinalysis, bone marrow biopsy, blood work, etc.) to measure any differences the drug made, including the effect on the IDH2 gene mutations. 

I won't go into the visit requirements for future cycles, but they will be a bit less strenuous than the first month.  He will not have go in weekly, only bi-monthly, from what I understand. 

In terms of the number of cycles, that too is to be determined.  It is my understanding that in this phase the co-Horta will be at least 3 cycles.  At some point, he may have to move on and enroll in the next phase of the drug study, as they continue to test the drug's progress.  He can stay on the drug at no cost to us until the drug would be approved by the FDA and therefore would no longer be considered "experimental."  It is in the best interest of the drug company to keep Todd on the drug as long as possible, provided it is working effectively for him, with no signs of toxicity.  And of course, it would benefit him by seeing higher blood counts. 

At first, I was discouraged about how we were going to pay for our expenses going up to Cleveland, because the nurse coordinator was told that the drug company, or the Sponsor, was NOT going to pay any expenses except parking.  Sloan-Kettering's site was going to pay up to $350 reimbursement per official assessment visit and we could obtain airfare for free through the Corporate Angel Network.  However, after reading the the Informed Consent Agreement, I found a section stating that if the patient has to drive more than 50 miles one-way to the drug study site, then they will reimburse up to $250 for travel expenses per official assessment visit.  Originally, we thought they were only going to pay the $10 parking fees per visit, which would have meant we would have had to pay much more out of pocket expenses.   Keep praying that they will stick to this part of the agreement. 

Every visit, no matter how tiring for me, will be filled with positive, happy, and excited expectations!

Todd's current health
Todd had to have a transfusion Saturday, April 4, and Tiuesday, April 14, 2015; just 10 days apart.  Besides his low hemoglobin of 7.5, his other counts looked surprisingly better:  Whites .7, Platelets 51,000, and Neutrophils at .4.  While these are by no means great or anywhere near normal, they are a slight improvement from the CBCs of the last few weeks; so we will rejoice all the same!  I think these counts are up because he hasn't had any chemo drugs for 8 weeks.  While the chemo kills the blast cells, it also kills what little he has of his healthy cells.  This is good, but now the blast cells are increasing unhindered which is bad.  The drug, which has been shown to work in as little as one cycle, will help block the IDH2 mutations which allows more cells to mature and fully develop into healthy cells, thereby decreasing the number that turn into blast cells. 

He gets increasingly tired and light-headed as the number of days after his transfusion increase.  His spirits are good, and even feels up to harassing me with silly jokes most of the time!

Family matters
Wow!  Things have been crazy busy!  It always is the last quarter of school.   Ellie is finishing up Club volleyball season and started running track to stay in shape. Hannah Lewis is preparing for Prom, and helped to host the High School senior portfolio art show. The art projects she completed as a result of her Yeck Art Scholarship at the Dayton Art Institute will be on display at another art show there on May 28. I'm a bit behind, but we are preparing for graduation May 30. I need to get announcements printed and out in the mail, then prepare for a graduation party.  A great offer came in from the Columbus College of Art of Design  and we are trying to steer Hannah Lewis in that direction because of its proximity and because it provides the lowest financial committment (debt).  Abby is finishing classes at the University of Cincinnati and needs to move out of her dorm room by the first weekend of May. She needs your prayers as she considers whether to stay at UC or transfer to Wright State University in the fall, so she can be nearer to home with everything going on.  She is going to try to take a math class over the summer at Clark State, which is close to home. 

We also need prayer and any suggestions or connections for Abby and Hannah Lewis to get summer jobs.  They both have been applying for jobs, but haven't been able to secure anything yet.  Hannah Lewis is only 17 and that disqualifies her from many opportunities for 18 year old mandated positions.  Abby is looking for a serving position at a nicer restaurant, but is open to other jobs. 

Financially, we are happy to finally receive the first Social Security Disability payment this month!  We have been preparing our house to put up for sale by the end of the April or beginning of May. The real estate market in Beavercreek, Ohio has been hot!  So, we want to maximize what we can get out of it. Looking for the right size house has been a bit of  challenging. We know we need to sacrifice, but looking at something a fourth of the size of our house has been shocking for us and a bit saddening for Ellie. Our current home is really the only house she has known.  While Todd and I are more ready for going smaller, Ellie wants a bit of personal  space (aka a teenage retreat away from mom and dad but under the same roof!).   We also want to have space for Abby and Hannah Lewis if they want to come back home for summers, holidays, and/or if they want to transfer to a local school. 

I haven't been able to work much and I spend a lot of time on the phone arranging for Todd's treatment. I applied for 1 summer class and 1 workshop, both of which are short and all online. I also applied for two summer internships, but haven't heard back. I think once Todd is down to bi-monthly visits and hopefully needs less transfusions, I can start working. My parents, family, and friends have offered to go with Todd for his treatments, so I can find a job or internship. 

I have to work 150 paid or unpaid hours for my practicum to be able to graduate by the end of the year. I originally planned on doing a practicum in the fall at Wright State University, but their digital archives department is no longer accepting practicum students. So, I have until June 8, to find and register for a different practicum.  Paid would be nice, but I'm just anxious to gain the job experience. It's very complicated, but I need a few things to come together for my last class and practicum in the fall to graduate. 

Thanks again to those of our supporters who are still sending gas cards, meals, and financial gifts. We will be putting out a call to action soon asking for help with a very projects around the house, packing, moving, and maybe some help painting walls if we buy something else that needs it! 

Thanks for all your love and support. 

 

Dear Perspective Employers:

Hello,

I'm sure that many of the employers I have applied for jobs with may have found their way here to this blog by either Googling my name or because I mentioned it in my cover letter. 

While our journey has had many ups and downs and uncertainties, please rest assured that I would not have applied for an internship or job without considering my commitment to follow through. 

With Todd starting this new drug study I will have help from friends and family getting him to his appointments. 

I have years of life and work experience. I began working at age 14 and stopped  only to stay at home with my children. I have been back to work substitute teaching and working in the school library  I will finish my MLIS by the end of this year, 2015. I know I can bring the same tenacity and attention to detail, as I have in everything I commit to. As you can tell by reading this blog, I helped to find this drug study using my reference and research skills. I helped provide the motivation to bring it to The Cleveland Clinic, with my husband being the first patient to be enrolled in the study at this site. I will approach any job with the same determination!

Thanks for your consideration. 

Drug Study @ Cleveland Clinic begins April 13, 2015

The beginning of the week has been a pretty good one for Todd.  On Monday, he went into see the local oncologist and to get his weekly CBC.  He did not need a transfusion, with his Hemoglobin at 8.5 and Platelets at 56,000.  His whites and ANCs were still dangerously low.  The only concern the doctor discussed with Todd that day was about removing his Hickman central catheter, fearing a greater potential for developing an infection with it in.  While we know this, we have always taken great care of it and have never experienced any problems with it.

We are not sure it was a good time to remove it just yet.  Although the drug in study, AG221, is a pill, they will still need to hourly blood draws for 10 hours on certain days, which means ten less arm sticks!  In addition, it makes it easier to get transfusions and weekly CBCs. 

Dr. Stein from Memorial Sloan Kettering called us early Monday morning to me answering in a craggy voice!  I had been suffering from sinus drainage and had almost lost my voice.  He was concerned about Todd, but I assured him that Todd was fine!  He said he had spoke to the Drug Company representatives who are setting up the trials and that they thought Cleveland might be ready in a week or two.  He asked us to call our contacts at Cleveland to see how the process was going and when they expected to start.  Todd told him we would call and get back to him.  Todd called BMT doctor and left a message.  We didn't hear back until after 5:00 pm that evening.  She said she was trying to find out who the site investigator was and would get back to us.  By late Tuesday afternoon, I still hadn't hear back from the BMT doctor.  I called Dr. Stein and told him that we still hadn't heard anything from Cleveland.  He found out who the site investigator was in the course of our conversation and said he would send him a message.  Later that evening, the BMT called saying they were anticipating a department meeting on April 10 and then they would be up and running and able to start the drug study on April 13, 2015, if there were no problems.  I relayed the message back to Dr. Stein's office and I asked about Todd's bone marrow biopsy results, but they were not back yet. 

Todd was a bit anxious to hear about his biopsy results, and we finally heard back from Dr. Stein today with his results and we formulated a plan for beginning the trial study.  First, the results:  the bone marrow biopsy done in New York, as part of the screening process, showed that his blast cells had increased slightly to 5-8%.  This was up some from his biopsy on February 18, 2015, when they were at 3%.   We had expected this slight increase since Todd hasn't had any chemo since February.  Once again, we were pleased that the count was not higher. 

Second, we talked to Dr. Stein and received multiple messages from Todd's BMT doctor in Cleveland in regards to enrolling in the AG221 drug study at Cleveland Clinic beginning April 13, 2015.  Dr. Stein was good with us switching locations and actually wanted us to do what would be easiest for us.  They only real concern was getting the screening results and records transferred to Cleveland and actually being able to start the trial at Cleveland ON TIME. 

The main concern at this point is the window of time Todd has open to get started on the drug.  We only have 28 days from the screening date of March 24 until Todd starts the drug without having to re-do all the screening tests, which would be too much on Todd.  So, that gives us until April 21, 2015, as the deadline for Todd to begin taking the drug.  Todd's BMT doctor said she would out of town next week, but that she would have the trial study contact nurse stay in touch with us next week to let us know if everything was still on schedule, or if there are any problems.  The drug company is to do an inspection and final approval on April 10. His BMT doctor asked us how soon we could get a flight to New York through The Corporate Angel Network, in the event that there would be a complication, and the drug study start date would get pushed back at Cleveland.  In that case, we would have to go back to Memorial Sloan Kettering in New York to begin the first month of the study there. 

In a way, we are still in limbo about where we need to go for the study.  If, everything goes according to schedule, Todd will start the study at the Cleveland Clinic on April 13, 2015.  If there is a problem, and Todd can't start the study at Cleveland that week, then we will be returning to New York (likely on April 20, 2015). 

Several people have expressed their concerns about Todd returning to Cleveland, since we LOVE Memorial Sloan Kettering and can't praise Dr. Stein enough.  Of course, we would rather see Dr. Stein and go to MSK, but Todd feels the traveling to New York and back so much that first month would be very taxing.  I think driving to Cleveland three and half hours each way is more taxing than flying and driving in, but going to New York might require more overnight stays than Cleveland.  This would be harder on the family in general too. I like Cleveland Clinic; they have been very good to us, don't get me wrong, but I really like Dr. Stein and Memorial Sloan Kettering.

If you have ever noticed, that up until this point, I have not used any of Todd's doctors' names just to be sensitive regarding anything negative I may say.  Dr. Eytan Stein, however, I have introduced you to through the many articles and presentation he has done via posts on my blog in the past.  It would have been hard to conceal his name, knowing the work he has done with this trial drug study.  I'm so happy that I have nothing say but GOOD about him!  This is the kind of doctor you thank God for.  I believe that he serves God by serving mankind.  You can tell he has a servant's heart with compassion for his patients and their families.

Todd's BMT doctor feels we should wait on getting rid of his Hickman catheter just yet.  Once the trial gets started, we are going to re-visit the issue and there is a good chance that they will remove the Hickman and put in a port for the blood draws.  This would require a lot less care (no daily flushing and weekly cap and dressing changes done by me) and it would be more comfortable for Todd in general. With it in, he can't get it wet not has he been able to sleep on his stomach since he had it put in last year.  It would also take away an avenue for an infection to get in.    

Tomorrow, Todd goes in to Miami Valley to see the Respiratory Therapist to get a breathing treatment of his Pentamidine. He may also go to the Cancer Center to have his blood counts checked to see if he needs a transfusion.  Then, we are all going to our first all-family counseling session.  I'm not sure if I like the psychologist just yet; time will tell.

I have spent most of this week cleaning up and decluttering the house, so we can get ready to put it on the market.  I've also started typing up a selling sheet, as we intend to list our house for sale by owner. Please be in prayer for this entire process.  It is stressful and a bit sad to know how much of our belongings will have be sold.  I need to also plan a garage sale soon, so I can thin out the garages and some smaller items in the house.  Truth be told, I will likely have to have a moving sale too, after we sell. 

We are looking forward to spending Easter with our children and my parents. May God bless you as you celebrate Christ's Resurrection! And, to my Jewish friends, I wish a Blessed Passover. Thanking God for his grace day by day.