AG-221 Is the Miracle Todd Needed.

Todd before transplant: August 16, 2014 at Abby's Soccer Alumni Game

Now: Todd (Middle) at the Hall Family Reunion July 12, 2015 with Cousin Denny Cade (Left) and brother Ted Cade (Right)

Well, Todd has had two appointments at the Cleveland Clinic since my last post.  We went up for his first appointment in August, on the 12th and stayed overnight at the Hope Lodge, since we had an early day on August 13, 2015 for Day 1 of Cycle 5.  On that day he had many of his routine tests, plus a bone marrow biopsy and an echo cardiogram.  Blood counts were good: White: 2.14; Hemoglobin at 10.1; Platelets at 78,000.

His second appointment, for Day 15 of Cycle 5, was just this past Thursday, August 27, 2015.  It was a long trip up and back to the Cleveland Clinic just for lab work alone.  While this makes Todd a little frustrated, we both know that it is a small price to pay for getting the AG-221 trial drug, which has turned his health around dramatically.  His blood counts were holding steady, and not too far off from the prior visit:  White count: 2.49; Hemoglobin 9.8; and Platelets at 75,000.  We didn't stay long enough to find out the rest of the counts, like his ANCs. 

We did learn that the Cleveland Clinic has gained an additional 8 trial study patients in the past month.  These patients were originally on the trial at Northwestern in Chicago, but the study was shut down due to funding problems.  So, these patients, mostly from the Midwest, Iowa, Wisconsin, etc., are now traveling to Cleveland to be part of this study and continue their treatment. 

Todd received his bone marrow biopsy results back this week, and they look good to me!  We have not had a chance to discuss them with the doctor yet, nor have we received the latest cytogenic report yet.  From my reading of the results, it looks like his blast counts were down to 2% in the bone marrow aspirate itself, which is good!  This puts his blast counts on the high side of normal, which ranges from 0-2%, however, this cannot be classified as remission. The MDS disease is still present, and it is still classified as "Refractory Cytopenia with Multilineage Dysplasia."  The research nurse continues to suggest that we can look at his case as: "Stable Disease."  She hopes to see his platelets increase in the next few months to close to 100,000!

It is hard to believe that it was about a year ago that we were preparing for the move to Cleveland, and Todd's difficult Bone Marrow Transplant in September 2014.  This past year has certainly been a roller coaster.  It is even hard to believe that Todd has been on the trial drug now for over 5 months!  What a difference time makes.  I am so grateful that his health has improved so much, just by taking two pills every day!  No additional chemo, no infusions, and no transfusions!  It makes me sick to think of him living month to month on Vidaza chemotherapy treatments and weekly blood transfusions, before he started the AG-221 trial drug.  I have to thank Dr. Stein at Memorial-Sloan Kettering for speaking and sharing the research on AG-221 and  for his direction in getting Todd started on the trial. I'm also thankful to the Cleveland Clinic and everyone that helped bring the trial there.  This drug is the miracle we needed for Todd!

Todd's next appointment will be for Cycle 6, Day 1 on Wednesday, September 9, 2015 where he will have an appointment with his BMT doctor and the usual routine tests. 

Todd has been feeling good overall.  He has been able to enjoy the nice weather and his nausea has leveled off some.  He has even gained back 5 pounds!  I think he looks good now and some color has returned to his face.  Before he became sick, his checks were always rosy-red; its good to see some of that rosiness coming back.  His bilirubin level is still high, with some slight jaundice, but that too is improving.  He still takes naps or goes to bed early when he needs to, but overall he is excited to get up every morning.

Personal News:

It is also hard to believe our 24th Wedding Anniversary is coming up on September 21.  Last year, Todd was in the hospital and we were forced to celebrate there!  So, this year, we can really celebrate!

Our youngest daughter, Ellie, started high school this past Tuesday, August 25, 2015, and we got our second child: Hannah/Lewis moved into the dorm at the Columbus College of Art and Design on Thursday, August 20, 2015.  Our eldest, Abby, officially transferred from the University of Cincinnati to Wright State University and begins classes next Monday, August 31, 2015.  I begin my last semester at Kent State that day also. I have one 15 week course and I begin my practicum at The University of Dayton that day too.

Some other exciting news, and a prayer request: I have a job interview for an internship this coming Monday, Augusts 31, with a large company in their archive department.  It is a paid, part-time internship, that would provide me with incredible experience.  Please pray that if it God's will, that I could be awarded the internship. I am no longer working at my previous part-time job.

We haven't sold our house yet, but are taking some different steps to help.  Our very good friend, Josh Allen owns his own Home Inspection Company, Allen Home Inspections and has performed a professional in-depth inspection of the house for us to present to potential home buyers!  I highly recommend him and his work!  (See www.allenhomeinspection.com).  Josh is a great Christian friend and we are so blessed that he is working with us.  If we don't have any luck selling soon, we will be listing it with a broker who works in the higher-priced housing market.  I would love to stay here; we have put so much into our home here, but we know it would be best to sell it and buy something smaller, with less expenses, that is easier for us to take care of.

We still have COBRA insurance premiums to pay each month and we anticipate that they will increase substantially in October, when Todd's employer has open enrollment, and the rates increase.  The Cleveland Clinic Foundation has been willing to help us in the past, but they have recently contacted us stating that they don't think they can help us any more in the future, basically because Todd isn't racking up enough hospital bills there to make it to their advantage to help us.  The only other place we can hope to get any help from would be the Leukemia and Lymphoma Society, with their Co-Pay assistance program.  We have to wait until October to reapply for assistance.  They usually award a set amount for the entire year in which they will allow you to submit medical bills or insurance premiums for reimbursement up to the total awarded amount. 

We have been contacted by the Human Arc, which is supposed to help with medical expenses, but we don't know much about them.  If anyone has used them in the past and can give us some feedback, we would appreciate it. 

We have been blessed this past few weeks with some awesomely delicious meals from a few of our good friends: Margaret and Jeff Sanders, Kelly and Vicki Kennedy, and Pastor Chuck Moore and his wife Marilyn.  God bless you for making my life a bit easier and for giving Todd a better incentive to eat.  Todd thinks that it was all this good cooking that has contributed to him putting on the five extra pounds!  Todd's mom is always trying to do the same with her cabbage rolls and desserts!  It is so amazing that when you when least expect it someone gives you a gift card or deposits money into the Todd Cade Care Fund!  While I often have myself a pity party when something negative happens, I try to turn around and give thanks for all the blessings!

For all of you, who have wanted to call or come by to visit Todd, but you weren't sure how is was doing, or if he wanted company, I think he is in a much better place now to do that.   We both understand that some people have a hard time being around someone who is"sick," but I believe Todd is feeling so much better and looks better, that he can enjoy visits and some light activity.  (Sorry guys, he not up to play golf!)

Thanks for your continued prayers and support.