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.