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.

No news is Good News

Since my last post, Todd has had two visits at the Cleveland Clinic, both with great results:  disease and counts are both stable!  The visit for Day 1, Cycle 4, on July 16, 2015,  was one of the 10-hour trial days!  It was a long one!  We went up the night before and stayed at the Hope Lodge again.  His first blood draw was around 7:15 am  and his last draw was about 7:15 p.m. making it really a 12 hour day for us, although the testing runs from 9:00 a.m. to 7:00 p.m.  Since Todd's brother was still in town (Dayton, OH) visiting, we drove straight back home 3 1/2 hours so we could be home to have breakfast with him and his wife on Friday morning before they had to catch their flight home to Florida. 

This was first time anyone had to access his new Power Port (chest port/catheter/central line) in his chest, and the first nurse did not have any success after 2 attempts.  They had to bring in another nurse to try to put the special needle in, with Todd's research nurse, Ashley, and a third nurse standing by to assist!  The problem?  They weren't using a large enough needle to access the port!  We learned through the third attempt and with the advice of his trial nurse, that they need to use a 1" 90 degree special needle to access it successfully.  Unfortunately, the first nurse, in her failed two attempts, only succeeded to inject several syringes full of saline into the chest cavity around the port!  No harm was done, since it was just saline under the skin, but it did plump up the area around the port a bit!  Oh well, they were able to put the needle in and install a connector with a cap so they could use that the entire day for his multiple blood draws.

The results from July 16 visit were:  Hemoglobin 10.3; WhiteBC 2.06; ANCS 1.85 (Low end of the normal range) and Platelets up to 75,000.  Everything but the ANCS are still below the normal range, but for Todd, these numbers mean stability, no transfusions, and no neutropenia!  His bilirubin was still high at 3.0 but within acceptable trial limits. EKG was good! They sent him home with a seat-belt protector to provide a cushion between the bandaged injection site and the seat-belt.  Apparently, some patients with low platelets suffer from leaking through the port injection site after leaving. 

For the most recent visit, Day 15, Cycle 4, he had to drive up to Cleveland Clinic just to do one round of lab work!  Our research nurse tried very hard to get the authorities in charge of the trial, to allow Todd to have the lab work done here in Dayton, instead of Cleveland, but the lab work has to be done at the trial facility.  I had multiple assignments due for school, so Todd ended up driving by himself that day. He left about 7 am, got there about 11 am and immediately turned around and after eating lunch was home by about 3:00 p.m.  I think this is the first time he has been to Cleveland without me in years, but I appreciated that I was able to stay home and work on my schoolwork (which I did for about 15 hours that day!).  With my work and training schedule, there may be times we may need someone to go up with Todd.  I know many have already expressed a desire to go with him, and be sure, we may take you up on it in September!

The preliminary lab work for that visit was about the same. Hemoglobin at 9.9; WBC at 1.99 and Platelets at 62,000. 

So, you can see that no news from us since the last posting, just means that everything is stable!

His next visit will be on August 13, 2015, for Day 1,Cycle 5.  At this appointment he will have to be there early, to have his blood drawn before the in-clinic dosing of the AG-221 at 9:00 a.m.  They also have an echocardiogram, EKG, and another bone marrow biopsy scheduled throughout the day. 

In regards to news of the trial going on At Cleveland Clinic for AG-221, they are still trying to get potential candidates to enroll.  I believe there are only two patients at present, one of which is Todd.  The latest press release from Agios is here: Ag-221 June 2015 Press Release providing a follow-up for the European Hematology Association held in June. 

I'm encouraged that I have heard from several other people who have stumbled upon this blog, or who have begun to follow it, because they have family members that are struggling with MDS too.  I was blessed enough to hear from one reader, who has a family member on the same AG-221 trial.  Its so nice to know that we are not alone and that anything I write may be helpful to someone else!

Personal Notes:
No luck selling our house yet.  We have continued to drop the price, and friends and family are graciously posting our listing and telling their friends.  The once-hot market seems to have cooled quickly.  Two other houses in our neighborhood have also gone on the market for sale, so we have picked up some traffic and calls from that.  Unfortunately, the other houses are not really comparable to ours in terms of space or amenities, so we may not be what they are looking for.

We were about to close the PNC account that was set up for Todd (The Todd Cade Care Fund) because there were monthly fees and no new deposits, but then we learned that there had been some recent deposits and we decided to keep it open.  Thank You to whomever made the donations.  I have been using it for grocery money, etc.  We are truly blessed by your thoughtfulness.

I've started my part-time job, but I have been spending most of my time doing online training courses, in-person training classes, and some on-the-job training.  I had a pretty full schedule last week with training, finishing up a class presentation from my graduate school summer course, and turning in 4 assignments for my workshop class.  I am completely finished with the one summer class, and will finish my workshop class this weekend.  Then I will have a break until August 31, when I begin my final Fall class and Practicum at The University of Dayton Archives. 

The kids are getting ready for school to start soon!  Hannah Lewis has an 18th birthday coming up in a few weeks, and then will leave for college!  Abby has successfully transferred to Wright State University and will start classes the same time I do!  Ellie will begin her Freshman year of high school this month too!  So much to do...

I appreciate your prayers, as I am very discouraged spiritually.  I'm trying to focus on anything good that happens, and not see the bad things as unfair or unjust.  My latest mantra has been that I'm healthy, I have all my needs provided for, and that my children are healthy, and so is Todd!  I can't deny that our lives are drastically different, especially in light of our financial situation and our stress levels.  I feel that some have been so generous while others have been prejudicial; it doesn't bother me, but I  wish I could do more for the kids and make things easier for them.  Sometimes, I feel that people avoid our family, because they know of Todd's illness and our situation, they either don't have the words to say, or don't want to invest emotionally or otherwise in our family or our crisis.  But, as soon as I say this, I can admit that God has raised up others in their place who have brought a meal, made the effort to visit with us, and continue to offer their love and support in so many ways.  Our families have been supportive (I couldn't ask for more!) and I have been blessed with great friends!

I have been trying to use prayer books or orchestrated prayers to guide me in prayer.  So, please feel free to send me your favorite prayers to meditate on!  Thanks.  God bless.