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.

Out with Old (Hickman) and in with the New (Port)

Todd before his surgery procedures.

I apologize for not blogging sooner!  I am back in graduate school, which along with everything else, has left me very little spare time.

Todd went into surgery on Thursday, July 2, 2015, to have his Hickman Central Catheter removed and his new chest port put in.  There were  no problems with either, however, Todd was considerably sorer than anticipated.

On his appointment day, he had his blood drawn, for the trial study and to see if he needed platelets during the surgical procedures. His counts were stable.  His hemoglobin was 9.9, Whites at 1.96, ANCs at 1.45 and his platelets were at 67,000-which meant no platelet transfusion was needed.  He didn't see his doctor that day, so besides the surgery, it was a short day.

Saying Goodbye to the Hickman!

He experienced considerable pain around the insertion point of the port catheter and around the catheter itself for the first 4 or 5 days after the procedure.  He has had some severe bruising.  He likened the pain to being hit with a hammer to the neck and chest. He wasn't allowed to drive for 24 hours or lift anything heavy, and was even advised not to make any major decisions, apparently because the type of anesthesia they used could impair his memory temporarily.  They were able to administer the anesthesia through the Hickman catheter, before they pulled it out. 

The type of port they put in was a new variety that the hospital was using for a limited time.  It is called a Power Port.  It doesn't need flushed with Heparin every six weeks, but instead every 3 months, if it is not in use.  He is healing up and feels little pain, although there is still some lingering bruising.  He can now shower, go to the pool, and even shot a shot gun!  The radiologist asked him if he was right handed and would he ever like to shoot a shotgun in the future!  If so, he was going to put the port in the left side of the chest, which was the plan anyway.

A few days after the surgery.  Hickman removed on left.  Insertion of new port on the right.

In regards to the trial study in general, we found out that another person was enrolled in the study, making the total 3 now at the Cleveland Clinic, however, the second patient had just left the study because of the nausea he was experiencing.  Although Todd is still suffering from the nausea and elevated bilirubin, he feels it is tolerable knowing that he really doesn't have another choice of treatment.  He has lost another 5 pounds, making his total weight lost since September, 2014 nearing 40 pounds.  I am still very concerned about this, but it is impossible to control some one's eating.  We are encouraging him to drink his Ensure shakes whenever he can, and try to find tempting foods for him to eat, that don't upset his stomach.  He has the option of eating first, then waiting two hours to take his AG-221, and then waiting another hour after.  They wanted him to take his medication at 9:00 a.m. each morning, so this would mean getting up and eating before 7:00 a.m., which just isn't realistic for how he feels (he likes to get extra sleep in the morning).  The drug study does allow for a 6 hour window to take the medication, so he does have the option of eating first, as late as 1:00 p.m. and taking the drug by 3:00 p.m.  So, he is experimenting with this option when he feels like it. At least we know that the nausea isn't limited to just him, but that other patients are struggling with the same side effect. 

His bilirubin seems higher on some days than others, if the yellowness in his eyes are any indicator.  On Thursday, his eyes were so yellow, that all three kids, at different times said something to him about noticing it.  So, I spoke to his research nurse so they could make a note of it.  At his last visit his bilirubin count was at 3.4.

We leave for Cleveland again on Wednesday night, to be there early Thursday morning for another 10-hour of blood draws for Day 1 of Cycle 4.   No bone marrow biopsy will be done, until the beginning of Cycle 5.  It is hard to believe he has been on the drug for 3 full months now!  It has been so great that he hasn't had to have a transfusion since then!  We are grateful for that, but even so, going to Cleveland Clinic every two weeks has been tiring.  We were supposed to be able to go only once a month after Cycle 4, but apparently that isn't the case.  They still need labs drawn, and our research nurse asked if he could do it in Dayton, but he has to have done at the research facility, Cleveland Clinic in his case.  There is a new amendment of the study coming out, which would give the patient a 3-day window to have testing done, so that would allow us more flexibility in going to Cleveland.  She thinks he can be added to this amendment, which would be a bit more helpful, if I have to work on a set testing day.

I asked if there was another amendment of the study, that provided a lower dose, or allowed Todd to take the drug with food, but there isn't.  Instead, the latest patients signing up for the drug have to go on a 650 mg. dosage of the drug!  Todd only takes 200 mg. per day!  I can't imagine how many more side effects this patients will have to deal with!  Our nurse said that we picked the best time to get on the study, when the dosing was still lower.  Thank you Lord!

Personal News:
For me, things have been busy even in the summer.  I'm starting my sixth week of classes this week.  Just two more to go!  However, I also start my two week plus workshop this week too!  So, I will have some overlap in assignments, readings, and projects.  I'm having a hard time now staying up with weekly assignments, so I'm afraid I'm going to have to find more time.

My practicum is officially set up for Fall Semester, beginning August 31 at the University Archives at The University of Dayton.  I have to complete 150 hours within the fall semester which ends in December.

I did get hired at CVS as a part-time pharmacy technician, but haven't started working yet.  I had have an FBI background check and drug testing completed first, before I can begin training.  I'm going to try to get my practicum hours done on Mondays and Tuesdays, and be available for work the other days, although my supervising Archivist as UD is very flexible about what days I complete my work.

We still haven't sold our house, which has been on the market now for just 7 weeks now.  However, property taxes are due and our funds continue to deplete.  I just can't get to working fast enough.  I've thought about postponing finishing school, but Todd feels I need to finish in order to get the best paying job once I have my Masters.  God is still providing, with help from our church and friends and family.  We continue to market the house and lower the price, knowing that we really need to sell by the end of the summer.  I am thinking about setting up a "Go Fund Me" account, because we haven't had much response to the PNC account.  Neither Todd nor I really have felt comfortable setting up this kind of account or asking anyone for money.  We would rather trust God, as he lays it upon the hearts of people.

I have been working hard to get Abby and Hannah Lewis ready for college.  Abby is going to transfer from the University of Cincinnati to Wright State University and Hannah Lewis leaves for Columbus on August 20.  We have worked on financial aid and loan paperwork this past week.  We still need to do some shopping for the dorm room and are in need of a new MacPro computer for school.  Both will need books, etc.  Ellie is still preparing for Volleyball tryouts, which will be August 1.  She also has been working on her Honors English pre-class reading assignments, due the first day of school!

If anyone has some experience with the mechanics of a riding lawn mower, we could use some help getting the snow throwing attachment off of our zero-turn lawn mower, and help installing the mowing deck.  If we can mow our own grass, it would also help us save some money.

I'm really feeling helpless on many issues, and I'm trying to remind myself to trust God's timing.  Thank you all for your love and support.  I will try to get another blog posted soon after this week's appointments. 

High Cost of Cancer Drug: The story as reported on 60 minutes

Not sure if everyone saw the 60 minutes episode this past Sunday, June 22, 2015, about the high price of Cancer Drugs and what doctors are trying to do about it, but I wanted to share it.

The most important thing to know is that chemo drugs are purchased by your oncologists at wholesale and then marked up with large margins.  Some prefer to offer continuous month by month chemo instead of other options like bone marrow transplant, trial drugs, or even nutrition supplements that may offer some help. I understand that some patients don't have a choice, but some do.  I know Todd did, even though the bone marrow transplant option did not work with his disease, I'm glad he sought other options. 

I'm thankful for the research being done and for the drug companies creating the medications, because Todd's health is dependent on them right now!  However, there is a difference between making a healthy profit and making people chose between paying for medication or dying.  It all goes back to the government, how the laws are written, and how they charge Medicaid.

So glad that some doctors are willing to take a stand.  Here is the link:
Stay informed!
http://www.cbsnews.com/news/cost-of-cancer-drugs-60-minutes-lesley-stahl-health-care/

Cancerous Blast Cells down to 2%

Todd celebrates Father's Day with our children: Hannah Lewis, Ellie, and Abby

It is hard to believe that Todd started his third cycle of AG-221 trial drug last Thursday, June 18, 2015, at his last visit to the Cleveland Clinic.  We were prepared for another 10 hour day of blood draws for Day 1, Cycle 3, but the required testing protocol for this day 1 was different.  We went up and stayed at the Hope Lodge in Cleveland the Wednesday night before.  His Thursday testing day started early with a 7:40 a.m. doctor's appointment and exam.  Overall the doctor was pleased with the response that Todd has had on the drug so far.

Everything looks like a "GO" for having his Hickman Central Catheter removed on the next visit, Day 15, Cycle 3 on July 2, 2015.  Todd questioned the need for the port that they are going to put in instead.  The doctor agreed that it wasn't 100% necessary, but that it would be easier than being poked or having a temporary arm port put in each time he comes.  It would be nice to have in case it is needed in the future, but that isn't the main motivation for putting it in.  If Todd's condition would worsen, they could always install a port or another catheter at that time, but right now his numbers are the best they have been since transplant, so it is just a good time to do it.  The port would require a lot less care.  It is under the skin, and it would only need to be flushed with Heparin every 6 weeks or so.  This would have to be done by a nurse, so it would be done during his regular monthly visits to the Cleveland Clinic.  If his platelets are under 50,000 there is a good chance that they will want to transfuse him with platelets before or during the procedure. 

While his research nurse was drawing blood, she noticed natural clotting at the cap for the first time.  (This is a good thing that his blood could clot or stop on its own).  After the usual tests, he was sent to have an Echo cardiogram done, which is something he hasn't had done since his pre-trial tests.  After that he had his routine EKG and then was sent to be prepped for his bone marrow biopsy (number 15 I think).  By then, we had the blood test results back; they were stunningly wonderful! 

His hemoglobin was at 10.2!  His whites were 2.79; ANCs at 2.29 and platelets at 46,000.  His bilirubin is still higher than usual, at 3.4, which is up slightly from the last blood draw.  They also ran a metabolic panel and all of his cholesterol numbers looked good. 

After his bone marrow biopsy, we were free to head home.  We had a showing to a realtor (on behalf of his clients) of our house on Friday, so we needed to rest-up.  I was tired because I had been in Columbus, Ohio, with Hannah Lewis for college orientation at the Columbus College of Art of Design on Monday and Tuesday before leaving for Cleveland on Wednesday afternoon. 

Todd was feeling good for Father's Day, on Sunday, June 21.  My parents came over and we made dinner for everyone in honor of Father's Day.  All the kids were home, even though Hannah Lewis and Abby had to go into work later that day. 

Unfortunately, Todd woke up sick this morning, Monday, June 22, about 5:45 a.m. throwing up.  He continued to be sick throughout the morning.  I knew we had all eaten the same food, so I made sure no one else had come down sick.  It was just Todd.  Not sure why, but he had a bad spell of nausea and it is possible that with the combination of eating a late snack later, his food just didn't sit well.  I called the Research Nurse to check on the protocol for taking or not taking his trial drug this morning and to give them a head's up about him getting sick.  He had no fever.  So, after a battery of questions, they instructed that he had up to 6 hours past the 9:00 a.m. dose time to take the medication, or if not to skip it for the day and take it tomorrow morning.  After his stomach calmed down, he was gradually able to take  his medicine and then keep some Powerade and crackers down, then we added more food in during the day. 

While talking with the Research team, who called to check on him about 4:30 p.m., they were able to give us the results from his bone marrow biopsy.  It showed blast counts at 2%.  This has been about the same as the last two marrows in which the results were between 0-5%. So, the disease is still present and his marrow is still producing some blast cells, but less of them and more healthy cells, giving him increased blood counts.  They still would classify his disease as "Stable" with 2% blasts and that he is having a hematological response with the use of the trial drug. This is such a turnaround from just three months ago. 

Personal family updates:
Summer is here and we long for a vacation of any kind, but no plans are in sight.  Once Todd gets his Hickman Catheter out, he will at least be able to get into a pool!  Abby is still working both jobs and is in the process of transferring from The University of Cincinnati to nearby Wright State University.  The program is different from U.C., so her new major will be Psychology with a concentration in Behavioral Neuroscience.  She is still entertaining the idea of going to Medical School.

Hannah Lewis will be leaving home for The Columbus College of Art and Design on August 20, 2015.  We have a lot to do: dorm room shopping, financial aid paperwork, loan paperwork, etc., to get done before then.

Ellie returned safely from her 8th grade trip to Washington D.C.  She is excited about being a Freshman in high school now (it is hard for the rest of us to believe!).  She has started volleyball practices and conditioning.  Tryouts will be in August.  In the meantime, she is also doing some conditioning with the cross country team. 

I'm beginning the third week of my summer class.  My Archival description workshop starts mid-July and lasts for two weeks, but I already have a whole list of pre-class reading and projects to get started on! I'm back to applying for jobs, but this time just part-time.  I've applied at Kroger and CVS as a pharmacy technician.  I can't work full-time because I finally got my practicum set-up for the fall semester.  I have to meet with my practicum supervisor this week to finalize my schedule and paperwork, but if all goes well, I will be training at the University of Dayton, in the special collections and archives department of the Library.  So, I praise God for this. I was also able to get into my last needed class for the fall semester.  With all this, I am set to graduate at the end of the fall semester. In the meantime, I have renewed my substitute teaching license for the upcoming school year.

Our house has been on the market for just over a month now.  We have reduced the price, but we have not had the interest we were hoping for.  So, we've decided to have a plan B, in case it takes longer to sell it.  So, that's why I'm looking for part-time work.  

How can you pray or  help?  Pray for a buyer for our house.  It will take someone special to buy it.  In the meantime, pray that we can continue to take care of our expenses.  If you know of any part-time positions that I can work at in the evenings or weekends, please let me know.  I know God will provide.  My uncle past away this past week, so please remember my family, especially my beloved Aunt Sheila as we bury him this week. 

We appreciate your love and support. 

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).