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.

The Waiting game...

It's Wednesday, February 25, 2015, five days after receiving the preliminary bone marrow results. We sit in the hospital while Todd gets blood and platelet transfusions, with no new from the doctors at the Cleveland Clinic about what the next hurdle in treatment will be. I say hurdle because that best describes our journey right now. His disease continues to present new hurdles and we try to pace ourselves in between them, waiting for the right time between strides to make the leap to jump over the next challenge.

I understand that his BMT doctor is trying to make the best "informed" decision she can, which may include some waiting on further test results, but I can't help but feel sad, tired, and anxious as I watch my husband get sicker by the day. With every transfusion he receives, more iron builds up in his blood making it harder on his organs. Every day with neutropenia, low white counts and low ANCs he is at risk for infections and fevers. Every day with low platelets he risks bleeding and hemorrhages. While the doctors may be comfortable with the neutropenia and cytopenias, I am not.

Todd went to see his local oncologist yesterday and have his blood drawn. Even though I shouldn't expect higher blood counts, I still hold out the hope that they will be a little better than before.   Instead, I can't help but curse when they come back so low. For those of you who follow his counts, his hemoglobin was 7.6, whites at .300, ANCs at .2, and platelets at the threshold for transfusion at 10,000. 

I have spent the last few days in tears. I'm sad, frustrated, angry, and exhausted. Todd?  He's doing good!  He doesn't complain about his fatigue, nausea, or even that he has been inflicted with this disease. He's my inspiration!  

For those of you who have been asking about my job search, I don't have much of an update. I haven't even been subbing much lately. I've been so tired from just keeping up with the girls' schedule, homework, helping out with additional chores so Todd can rest more, and trying to be there to go to his appointments. It only took having Todd admitted to the hospital a few weeks ago, for reality to hit me. Getting a full time job right now probably is not the best idea. I go through periods of really wanting to get a job to help with our finances one the one hand but on the other, I realize that I wouldn't be there to help him if I was working full time. Someone would have to go with him to Cleveland and his appointments, but I want to be there to do that. I know his history and can help him more as his wife. 

If the right job opportunity came up, I would likely take it, but I haven't even had any calls from the applications and resumes that I have already put out there. I'm convinced that it is going to take someone helping me by word of mouth about a job opportunity, before I'm going to find something. I'm even thinking about applying for secretarial jobs for now. 

I'm at the point in my master's program where I need to fulfill my practicum requirement. Some of these practicums offer a stipend or hourly pay. So, I plan on trying to apply for one starting in the summer or fall. Unfortunately, there aren't many places offering them in the area. I may have to approach someplace locally or find a paying practicum that will require me to travel to.

It is really hard to plan anything too far in advance, not knowing how Todd will be or what his treatment will be. When? Where? Home or Cleveland? The same goes with selling the house. I finish my semester March 22. After that I'm hoping to begin working on getting it ready to sell. So, for a few of you who offered to help me clean out and box up, be ready for me to call. 

Other financial updates, a The Cleveland Clinic Foundation has once again generously agreed to help with our insurance premiums for two more months. But I'm afraid we've about exhausted their help. Our pastor has called, on behalf of our church, offering some help with utility bills. Several of my mom's friends have generously donated to the Todd Cade Care Fund at PNC bank. And we have someone who blesses us with a gas card almost every month. We are so grateful and flooded with joy at the unexpected and loving gifts from friends, family, and anonymous "angels." I didn't get to share the tears of joy I cried, when I found out that someone helped sponsor Ellie in paying the rest of her volleyball fees, on top of the generous advertisers that helped us.  We didn't have to pay anything out of pocket! This sponsor choose to remain anonymous, but if they are reading this post, please accept our deepest thanks and we pray God will bless you for the joy you gave us!  

We continue to do our best to be good stewards of every gift. For those who would like to help in other ways we do have a few needs. First, if someone could recommend a family counselor who is willing to take Anthem insurance, we would like to schedule some counseling. Throughout this entire journey, we haven't had the opportunity to get family counseling. This kind of thing would usually be offered to families for free at a Cancer Center that offers social services, but there are none in the Dayton area. The closest center to us is in Cincinnati. Of course, in Cleveland there are several locations of The Gathering Place where patients and family members can receive various services for free.

In addition, I could use a deep tissue message on my shoulders to help relieve stress and keep my sinuses clear. If anyone knows a message therapist who is willing to give me a discount under the circumstances, I would be grateful. Just by sharing this post, it may reach someone willing to help. This is another service that would be free to patients and family members at a cancer social services center, because insurance won't pay for it.

We could also use some help getting some repairs made to our house. We need someone that does a good job on fixing drywall, nail pops, and painting. Todd started a project laying pavers over our back patio concrete that needs finished when the weather gets better. I can't imagine him doing any physical labor anytime in the near future. So, you can help with any of these things starting in March, that would be a blessing. 

I'm going to close this post for now. I would like to leave you with the words and lyrics of Jeremy Camp's song He Knows. In an effort not to violate copyright laws, here is the link:
 https://www.youtube.com/watch?v=OsccUg4TDd8

God bless 

The "Todd Cade Care Fund" and the "Praying for Todd Cade" Facebook Page

Last week (Dec. 15-19, 2014), Todd finished up his first weekly treatment of the chemotherapy Vidaza in Dayton since the relapse of his MDS post-bone marrow transplant.  He did well, experiencing minor side effects of nausea and fatigue.  He had held most of the blood cells from his blood transfusion on Friday, December 12, 2014. 

We have received numerous checks, cash, and gift cards from friends and family the past two weeks which has been HUGE blessing to us!  However, others have asked how they can help from a distance or anonymously, so on Friday, December 19,  I went to PNC Bank with my parents to help set-up a bank account for people who wish to make donations to help us with our finances during this medical crisis.

Right now, anyone can make a donation in person at any PNC Bank Location or mail in their donation to the account:

TODD CADE CARE FUND. 

Please be assured that we will be good stewards of any gifts received.  Please know that these funds will not only be used for medical expenses, but also for living expenses such as mortgage payments, utilities, groceries, and the like.  Since Todd and I have both been unable to work, we have been limited to the modest monthly payment from Todd's private disability policy. 

Be assured too that we are doing everything possible to reduce our expenses.  Just this week, we sold one of our vehicles to provide funds and to decrease our insurance bill.  God be praised!

We have been approached by some of Todd's former classmates about holding a local fundraiser for him in February, 2015, but we are waiting for a date confirmation.  Details will follow.  A few others have also volunteered to set-up an online donation account such as "Fund My..." or a Paypal account, but this is still in the works and may not be up and running until after the holidays. 

We are humbled by your kindness and generosity.  It has been harder to be the "receivers" of such blessings than the givers. 

To extend the number of people we can reach with Todd's updates and news, our daughter Abby has created a Community FaceBook Page called:

PRAYING FOR TODD CADE

If you are on Facebook, please go to this page and "Like" it if you want to receive regular updates or quick posts via your news feed.  So far, he has 177 Likes!  Thanks for your interest and support. 

For those of you NOT on Facebook, don't despair.  I have every intention of maintaining this blog!  I'm so happy to hear people tell Todd or I that they follow the blog and are grateful for it.  Sometimes, I think it helps me more than just providing information to you, but I'm glad people follow it.  This past week, I have learned from many of those who have shared their experiences with battling cancer and this has been so encouraging!  Thank you for taking this journey with us.