One Year on AG-221 Trial Drug

As of March 23, 2016, Todd has been taking the trial drug AG-221 for one year!  It's hard to believe how precarious Todd's health was this time last year: getting blood transfusions every 6-12 days; having no immune system (no ANCs and no White Blood Cells); and having no energy-barely able to get out of bed.  Today, one year later his counts are good (for him)!  The disease, while still present, has not proliferated, and his cancerous blast counts are low!  Besides being in remission, we couldn't ask for anything more!

To give you an idea, here is a comparison of the differences in his counts from last year to now:

Year:                2015                          2016

Whites:                 .2                            3.99
Hemoglobin:       7.3                          11.8
ANCS:                   0                           3.15
Platelets:       70,000                       57,000


As you can see, he has had a remarkable increase in his White count, Hemoglobin, and ANCs.  His platelets vary now between 55,000-75,000, which is about the same as they were a year ago.  His platelets have not responded as well. In trial terminology this is considered as a hematological response without platelet recovery.  That being said, his platelets are still high enough to prevent any serious bruising or the need for transfusions (usually when platelets fall below 10,000). 

After not hearing back from the drug company whether Todd could only go once a month for his trial visits as promised, I finally sent a message to his bone marrow transplant doctor telling her that we were unhappy with how the administration of the trial has been going.  We haven't received any financial reimbursements for months, none of our appointments have been made ahead of time like they should be, and when they have been scheduled, they have been for inconvenient times  (8:30 a.m. when they know we have almost a 4 hour drive to get there).  I "offered" to go straight to the Principal Investigator at Cleveland Clinic or the Drug Company itself, but the doctor finally got confirmation that Todd no longer needs to go to the Cleveland Clinic for his Day 15 appointments just to get blood work done.  They have arranged for Todd to have his Day 15 blood work at our local Compunet Lab.  This means he will only  need to go to the Cleveland Clinic on his Day 1 appointments, only once per month!  What a relief!  No more driving up to Cleveland every two weeks!  I'm so grateful! As to the appointments and reimbursements: they are short-staffed and trying to hire more help.

In other news, we just received his preliminary bone marrow results from his latest biopsy from March 23, 2016:

Results: "Persistent Myelodysplastic Syndrome.  Hypercellular Marrow (90%) with Trilineage Hematopoiesis, Erythroid Hyperplasia, Multilineage Dysplasia and 2% Blasts.  Increased Iron Stores and Increased Ring Sideroblasts. Mild Microcytic Anemia, Thrombocytopenia and Absolute Lymphopenia."

This is a long way to say that he has 2% cancer blasts in the marrow, which is Low! And he is still mildly anemic and all three of his blood counts: white, red, and platelets are low.  We haven't received the latest cytogenics back yet, but the prior biopsies have not shown any major changes.  They still show he has complex chromosomal mutations, but no new additional mutations.

With all this good news we should be on an emotional high-right?  Unfortunately, we are not.  There are still other complications in our lives right now, that we are not able to fully enjoy these blessings to the fullest.  First, Todd has been suffering from persistent diarrhea.  He can't seem to eat anything, without immediately having diarrhea (no fun).  He isn't dehydrated, but it is starting to wear on him.  We  have discussed the issue with the doctor at the last visit, and they have called in lab orders for Todd to bring in a stool sample (which he isn't real motivated to do-who would?). 

Second, I still have not been able to find a full-time job.  It hasn't been for the lack of trying. I put in about 5 job applications per week, which is very time consuming, because everything has to be done online and some places require mandatory personality testing, etc.   My friends have been diligent in helping me find postings, but I don't have anyone who can help me get my foot in the door anywhere!  I've been substitute teaching about 2-3 days a week, and spending some time volunteering at Wright State University Libraries in their Digital Services Department, where I am working on a project.  Never have I experienced such a depressing cycle: applying, following-up, and receiving some type of rejection notice.  Not only is it wearing on me, but it is wearing on Todd, who also feels helpless that he can't work, and that I have to go through this.  (He has always been the bread-winner and has faithfully provided for our family; now, he is so limited and cannot work because of the cancer).  After I fill out applications, I feel so encouraged and confident that I can do the job!  But, weeks later, disappoint sets in when I learn I didn't get the job.  I just don't know what it takes...

Third, we are considering selling the house again.  We have half-heartedly put the for sale by owner sign back out in the yard, but nothing else.  It is not enough to get us the attention we need, so we need to consider getting back online for sale, or hiring a realtor to list it.  The process of having the house ready to show all the time and the thought of moving is so stressful, that this really needs to be a last resort option once again.

Lastly, we both feel like a lot of circumstances are out of our hands.  I am doing all I can, he is doing all he can, but its not enough to get us where we need to be.  This has led to moments of despair for both of us, at least temporarily.  Then, we both come around to putting things back into perspective!  His health is better than it has been in a long time, I am healthy, the kids are healthy, we have a roof over our head, and food on the table!  God is good! 

Prayer requests and needs:

Please pray that I can find a full-time job soon.  I have one prospective meeting next week, and one job interview at Target, but I fear that they will not be hiring full-time nor above minimum wage.  I have about two more months in which I can substitute teach, then school will be out for the summer.  Abby and Lewis have begun looking for summer jobs too, as college classes will let out in a few months.

Please pray we can get answers to Todd's persistent diarrhea and that it will subside.
Pray for encouragement!  And as always, with me working and volunteering as much as possible, Todd is home alone.  He sleeps pretty late each morning, but I'm sure he would welcome a lunch invitation or just having some company. 

Praises and shout-outs:  Thanks to Chris and Jessica White for raising our spirits by taking us out to eat and then hanging out with us!  To Gary Johnson, for helping Todd get the snow throwing attachment off and installing the mower blade onto our Zero-turn lawn mower.  Now we can mow our own grass instead of paying someone to do it (which will save us money).  Todd has already started training Ellie on how to mow the grass!  To Vicki Kennedy and Dana Johns who are forever looking for job postings and sending them to me!  You both are so helpful!  To my friend Darsie Wohler for getting me out of the house one day for lunch and some girl talk!  And to Pastor Chuck Moore, who faithfully stays in touch with us so he can pray for our needs.

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. 

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).

AG-221 Drug holds off Blood Transfusions for 3 weeks!

Todd Celebrates his 46th Birthday!

As of today, Monday, May 11, 2015, Todd has gone three weeks without a blood transfusion, thanks to the trial drug AG-221 that Todd has been taking now for 19 days.  His blood counts have not been in the normal range, but they have been significantly higher than they have been in months. 
On Monday, May 4, 2015, his white counts were up to 1.5; hemoglobin was at 9.0!; and his ANCs or neutrophils were at 1.2; and platelets at 53,000. 

We went to the Cleveland Clinic on Thursday, May 7, 2015 for his Day 15, Cycle 1 assessments.  We drove up on Wednesday and stayed at the Hope Lodge, sponsored by The American Cancer Society, for two nights and three days.

Our room, Hope Lodge, Cleveland, Ohio

This is the first time we have been able to stay there, since there is typically a waiting list for cancer patients and families that need to be there for treatment or transplant.  The best part of staying at the Hope Lodge, is that you can stay at NO COST.  You are required to clean-up after yourself, like wiping off your table in the dining area, removing your sheets, and straightening up your room, taking laundry down to the laundry area, change trash, etc.  We were eligible to stay after Todd's transplant last year, but decided not to because no children under the age of 18 are allowed to visit there. 

When we arrived on Wednesday night, volunteers had prepared a dinner for the tenants.  This was so nice; we didn't have to go out to eat, leaving us to go to bed early.  There are no TVs or food/drink in your room, so it's easy to go to bed early!  We had to be at the cancer center at 7:30 a.m. the next morning.  Blood work, urinalysis, and an EKG are done before Todd takes that morning's dose of AG-221, which is always taken around 9:00 a.m. every morning.  This also was the last day he could have the drug with food.  Starting Day 16, he will be required to fast two hours before taking the medication and for one hour after. 

Dining and Kitchen Hope Lodge

Since this was Day 15, the half-way point in the first cycle, Todd had ten hours of blood draws, more EKGs, and a bone marrow biopsy on the schedule.  This makes for a very tiring day.  There isn't much to do in between those hourly blood draws.  Todd tried to nap and I worked a puzzle.  We got lunch in one of the cafes in The Cleveland Clinic.  We wrapped up the day about 7:00 p.m. making it really almost a 12 hour day.  We were able to go to Little Italy (which is near the Hope Lodge) to eat dinner and to Presti's to have dessert.  We sat outside Presti's enjoying the beautiful warm weather (it's about time!), thanking God that Todd was healthy enough to do this (especially knowing our friend Rick lay in hospice).

Cream Puff and Crème brûlée

  We  hit the bed, did our chores in the morning, and ate breakfast at the Lodge prepared by volunteers, Helping Hands, before checking out and making the long drive back home to Beavercreek. 

I don't have the numbers from his counts that day, but they were holding steady, although they were not as high as that Monday before.  He did have a few blast cells in his bloodstream, which was a bit concerning, but the research nurse assured us that this is expected during treatment, since the medication often pushes the cells into the bloodstream.  His overall bilirubin was still high, but nothing they are concerned about.  The trial study research nurse assured us that they don't get concerned enough to change the dosage until they see levels up to 5 times higher than the normal level.  We all are anxious to see what the bone marrow biopsy results are.  Hopefully, we should get a preliminary report tomorrow or Wednesday. 

Todd with daughter Ellie

On Saturday, May 9, 2015, we celebrated Todd's 46th Birthday!  Unfortunately, we didn't get to celebrate as much as I would have liked. I woke up with a case of Vertigo, which necessitated a visit to the doctor.  I haven't been worth much since!  We went to Todd's mom's house for a birthday dinner and had a great visit.  We didn't really do much for Mother's Day either.  We had too much to do around the house to prepare it for listing and I still was suffering from the vertigo.

We received some sad news early Saturday morning that our friend Rick, from the transplant floor, lost his battle with Acute Myeloid Leukemia at 6:45 a.m. that morning.  They had moved him to Hospice in Ashland, Ohio, so he could be near to family and friends.  He had one good day while he was there: he was happy, ate food, went outside twice, and was able to visit with family.  Unfortunately, that was his last good day.  He was in terrible pain the following days and had to be medicated hourly.  Please pray for Lisa, his girlfriend and caregiver, who is deeply mourning his loss.  He had a 28 year-old son, who drove in from Colorado the day before he died, but didn't get to interact with him at that point.  He also leaves behind a mother and a brother. 

I have to admit that I was afraid that Todd wouldn't make it to this birthday last December/January.  His condition and prognosis was so poor then.  Thank God this trial drug is really making a difference.  Not only is he not needing transfusions, but he has energy to do things!

Family News
Our eldest daughter Abby finished her finals and moved out of her dorm room, wrapping up her freshman year at the University of Cincinnati.  Our middle child, Hannah Lewis, is finishing the senior year off.  Ellie, our youngest, finished Club Volleyball Season and Track.  She qualified to go to the GWOC Conference Final Track Meet, where she threw her personal best in shot put. 

God has answered prayers here too.  Abby found two jobs: one at Texas Roadhouse in Beavercreek as a hostess and the other at Steak and Shake as a server.  Hannah Lewis found a job at Graeter's Ice Cream and both are starting work soon. 

We continue to work hard on getting our house ready to sell.  We have been blessed with many friends and family who have volunteered to come over and help us complete some projects and clean up our house.  The real estate market here is very good right now, and we need to get it on the market as soon as possible.  No family going through the stress of cancer should have to worry about having another major upheaval like moving from their beloved family home, but we really don't feel we have another choice.  At this point, I think it will help cut our expenses tremendously and allow us to live more simply.  Please continue to pray for the right home for us to move into and for the right buyer to buy ours. 

Hannah Lewis has decided to accept an offer from The Columbus College of Art and Design in Columbus, Ohio.  We feel it is financially the best choice and we were impressed with their program.  Graduation and party will be at the end of the month. 

I hope my vertigo goes away soon.  I start my summer class June 8.  I can't imagine trying to move and do homework at the same time!  Haven't thought that far ahead; too much to do now. I need to finish this year if at all possible so I can start working full time.

What's next:
We go back up to Cleveland again this Thursday, May 14, 2015 for routine tests.  No long day!  They will check his blood counts and make sure that he doesn't a transfusion.  Hopefully, we will be able to discuss the bone the results, even though Todd is not scheduled to see his doctor this week.  The first cycle of the drug trial treatment ends on Wednesday, May 20 and we will go up for another long day of testing for Day 1, Cycle 2, on Thursday, May 21, 2015.

Thanks for your support.

Seeing Early Results within 5 Days of Starting Trial Drug

Todd holds up the AG-221 Trial Study Drug

We are so excited that Todd finally got to start the Trial Drug AG-221 on Monday, April 20, 2015, at the Cleveland Clinic. We had to be there from Sunday night April 19, through Thursday morning, April 23.  My mom graciously stayed with the kids.  Monday was a long day, beginning with testing at 7:15 a.m.  He took the first dose of the drug:  200 mg or 2- 100 mg tablets with food  around 9:00 a.m. with hourly tests of EKGs and blood draws for 10 hours beginning shortly after.  His blood counts were low that day with his hemoglobin at 7.6; whites .47; platelets 34,000; and ANCs/neutrophils too low to count.  So, once they checked the protocol to make sure it was alright to give him blood during the testing, they ordered him two units of blood to be transfused while he was there.  We finished that day around 7:00 p.m.

The next morning, Tuesday, April 21, we had to be there around 8:30 a.m. for lab work and testing.  No drug was given this day.  The protocol called for one dose on Day -3, which was Monday, then to do testing and evaluations for the next 72 hours.  So, we had to go back Wednesday for another easy day of morning testing and no medication.  Thursday, April 22, 2015 (my mom's birthday!) was considered the official first day or Day 1 of the trial drug.  It too was a relatively easy day.  We were able to finish up early and head home.  For all the months and preparation leading up to beginning the trial, three out of the four days we were relatively uneventful!

Overall, we are pleased with how everything went at Cleveland Clinic.  Todd got to see his bone marrow transplant doctor on Monday and Thursday.  I love the research nurses Ashley, Samantha, and Chad.  They were very good to us.  The Cleveland Clinic was able to fund our hotel stay for this initial visit at a nearby hotel between downtown Cleveland and the Clinic; mainly because we were on the waiting list for the Hope Lodge, but were unable to get in.   We were able to submit travel expenses including Todd's meals and gas/mileage for reimbursement.  On all other trips, we have to pay for our hotel stay, unless a room becomes available at the Hope Lodge, but we can submit those expenses also.  God continues to provide for us!

While we were there, we visited our friend Rick, from the Transplant Floor.  He had been admitted to the Leukemia floor trying to fight his relapsed AML since March.  The chemo has taken the toll on him.  His hands and feet were peeling and yellow from jaundice.  He wasn't as responsive like normal. He has a bowel blockage and hasn't been able to eat solid foods; unfortunately, he can't control his bowels at all, they believe that is also a side-effect of the additional chemo.  He has to have platelets and blood transfusions every day!  They are also giving him potassium for his brain.
As a follow-up, I talked his wife on Wednesday, April 29, and they were in the process of moving him to hospice closer to home.  The doctor said he may have 2 weeks to 2 months to live.  He has 50% blast cells in his blood stream, and does not have the same gene mutation Todd does, which makes him ineligible for AG221 drug study.  Please pray for him in his last days and for his family as they go through this difficult time.  

Todd had to have routine blood work done on the following Monday, April 27, 2015.  We were afraid he was going to need a transfusion, because he had been feeling fatigued the day before and spent most of the day in the bed resting.  To our surprise, his numbers were good!  He needed no transfusion since his hemoglobin count was at 8.8. His white count went up to 1.0 which hasn't been that high in weeks or months! His neutrophils were still low at .700, but at least he was above the neutropenia threshold of .500 and his platelets were at 60,000! We were praising God for these very early results. He had only taken 5 doses of the trial drug by this day and we want to believe that the increase was the result of the medication beginning to work.

The weekend we got back home, we started working on the house again, trying to get it ready to sell.  We both worked a little too hard and too much, but not without help.  That day, I had my good friend Dana come over and she went to work on helping clean out my bedroom closet, so it didn't look cramped or cluttered.  We got a lot done! Monday, I spent finishing cleaning the closet and taping up boxes and moving them out to the garage with the help of my good friend Darsie.  Tuesday, we were blessed with the help of our great friends Chris and Lynda; the guys worked outside in the yard and Lynda and I cleaned and straightened up the Piano Room and Dining Room.  We got so much done! 

In addition to working on the house, we have been selling our furniture and other items as we go.  I take photos and then we post the items online and usually spend the next day or two taking emails, texts, calls, and arranging pick-up times.  This has been a good strategy, since we are getting things removed now before showing the house and before I attempt a garage sale (which is so much work in relation to how little people are willing to pay). 

By Wednesday we needed a break! We had to pack for our trip to The Cleveland Clinic, but at least I was able to help Ellie pack up some keepsakes in her room before leaving late that night.   Thanks to Todd's mom Ann and our former neighbors Joni and Raymond, for all the boxes and packing materials!

We arrived around in Cleveland around 11 pm last night and hit the bed, since we had to be at the hospital the this morning, Thursday, April 30 before 7:30 a.m.  The day's appointments went well.  Todd saw his doctor and the research nurses got busy asking their questions, doing the EKG and blood work for the trial study.  He was scheduled to have a transfusion today if his hemoglobin was below 8.5, but we learned that it was at exactly 8.5, so everyone was in agreement that since Todd was feeling pretty good, they were going to hold off on transfusing him for today.  The rest of his numbers were down slightly, his whites went down to .830; his platelets down to 41,000; and the nurse contacted us later with the other numbers, namely his neutrophils, which have dropped to .530 making his nearly neutropenic again.

What's Next?
He is scheduled for routine blood work every Monday at the local oncologist's office, so we will see how his counts are on Monday, May 4, 2015.  If he needs transfused, the local oncologist will make arrangements for him at Miami Valley  Hospital before his next appointment at the Cleveland Clinic on Thursday, May 7, 2015.  This is going to be another long day of tests, because it is Day 15, or about the half-way point of the Cycle 1 of his drug trial.  In addition to hourly blood draws for 10 hours, he will have EKGs, and a bone marrow biopsy (his 15th? I think, he has had so many, I have lost count). They have also scheduled a treatment appointment for transfusion, if he hasn't had one by then and needs one. The protocol of taking the drug with food will also change at this point.  Instead, he will have to fast for 2 hours before taking his scheduled dose at 9:00 a.m. and then wait for 1 hour after taking it before he can eat.

The only concern so far is his bilirubin levels, which were elevated, however, even this is expected in the beginning.  The research nurse assured me that these levels typically come down as time goes on.  They are not concerned about these levels because his liver numbers and the direct bilirubin numbers both looked good.  They only thing that I noticed today, was a slight yellowing in the corners of his eyes; the nurse agreed that there was a slight bit of yellowing, but that this is a known side-effect of the drug.  If it gets too high, they will interrupt the dose or decrease it, but that his current levels are no where near needing any of those adjustments now.

On a personal note, we will continue to work on getting our house ready to sell.  Which means, I will be enlisting another round of volunteers to help me inside get things de-cluttered and cleaned for showing.  Todd won't need much more help outdoors, but mainly indoors, with a bit of painting projects, changing light bulbs inside and outside (some days I don't want him on a ladder), and repairing a bit of drywall.  Tomorrow, I'm going to help our oldest daughter Abby finish moving things out of her dorm room.  I can't believe she is done with her Freshman Year of college already!  I need to work on preparing a graduation party for Hannah Lewis, including buying decorations, ordering food, etc.  Ellie's last club volleyball tournament is this Saturday: yahoo!  And track season should be ending soon too.

Please pray: 

• That we can get our house on the market in about two weeks.  The market is still hot and we can't really buy or write a contract on anything til we have ours sold.
• That Abby and Hannah Lewis find jobs soon.
• That I can get get the majority of packing and selling done before I start summer classes in June.  I also have to turn in my application for a fall practicum by June 6 or so, and I don't have one lined up yet.  If I can't do this, I won't be able to graduate by the end of the year. 
• Continued improvement of Todd's health and stamina; namely, that the drug will begin to help his counts go up and the need for transfusions go down.
• Family issues and dynamics as we continue to undergo weekly family counseling
• That the transition of moving to go smoothly.  That God would open and close doors: find the right buyer for our house and the right house for us to buy.  We have been struggling to find  a house that isn't too big or too small that will give us enough financial breathing room while Todd is on disability and I finish my degree.  The physical demands of moving and the emotions of giving up our home and most of our belongings is traumatic, even though we understand they are just material.  This is the only home Ellie has really known and both of her siblings will be gone at college this fall; all this will be a big adjustment for her. 

As you can tell, there is just so much uncertainty in our future.  We are doing our best to take things a day at a time, but with such upheavals and the constant concern for Todd's health, me and the kids are feeling a bit anxious and emotional. (Not Todd, he is in a different place than we are!). We understand the wisdom of asking God to give us just what we need for that day, and not to worry or be anxious about everything else, but we need reminded!  We also understand that we need to take these feelings to God through prayer and that he will supply all of our needs.  Please pray with us.

As always, we appreciate your love and outpouring of concern and support.  It means so much, to see our friends and family helping us through all of this day by day.

Drug Study @ Cleveland Clinic begins April 13, 2015

The beginning of the week has been a pretty good one for Todd.  On Monday, he went into see the local oncologist and to get his weekly CBC.  He did not need a transfusion, with his Hemoglobin at 8.5 and Platelets at 56,000.  His whites and ANCs were still dangerously low.  The only concern the doctor discussed with Todd that day was about removing his Hickman central catheter, fearing a greater potential for developing an infection with it in.  While we know this, we have always taken great care of it and have never experienced any problems with it.

We are not sure it was a good time to remove it just yet.  Although the drug in study, AG221, is a pill, they will still need to hourly blood draws for 10 hours on certain days, which means ten less arm sticks!  In addition, it makes it easier to get transfusions and weekly CBCs. 

Dr. Stein from Memorial Sloan Kettering called us early Monday morning to me answering in a craggy voice!  I had been suffering from sinus drainage and had almost lost my voice.  He was concerned about Todd, but I assured him that Todd was fine!  He said he had spoke to the Drug Company representatives who are setting up the trials and that they thought Cleveland might be ready in a week or two.  He asked us to call our contacts at Cleveland to see how the process was going and when they expected to start.  Todd told him we would call and get back to him.  Todd called BMT doctor and left a message.  We didn't hear back until after 5:00 pm that evening.  She said she was trying to find out who the site investigator was and would get back to us.  By late Tuesday afternoon, I still hadn't hear back from the BMT doctor.  I called Dr. Stein and told him that we still hadn't heard anything from Cleveland.  He found out who the site investigator was in the course of our conversation and said he would send him a message.  Later that evening, the BMT called saying they were anticipating a department meeting on April 10 and then they would be up and running and able to start the drug study on April 13, 2015, if there were no problems.  I relayed the message back to Dr. Stein's office and I asked about Todd's bone marrow biopsy results, but they were not back yet. 

Todd was a bit anxious to hear about his biopsy results, and we finally heard back from Dr. Stein today with his results and we formulated a plan for beginning the trial study.  First, the results:  the bone marrow biopsy done in New York, as part of the screening process, showed that his blast cells had increased slightly to 5-8%.  This was up some from his biopsy on February 18, 2015, when they were at 3%.   We had expected this slight increase since Todd hasn't had any chemo since February.  Once again, we were pleased that the count was not higher. 

Second, we talked to Dr. Stein and received multiple messages from Todd's BMT doctor in Cleveland in regards to enrolling in the AG221 drug study at Cleveland Clinic beginning April 13, 2015.  Dr. Stein was good with us switching locations and actually wanted us to do what would be easiest for us.  They only real concern was getting the screening results and records transferred to Cleveland and actually being able to start the trial at Cleveland ON TIME. 

The main concern at this point is the window of time Todd has open to get started on the drug.  We only have 28 days from the screening date of March 24 until Todd starts the drug without having to re-do all the screening tests, which would be too much on Todd.  So, that gives us until April 21, 2015, as the deadline for Todd to begin taking the drug.  Todd's BMT doctor said she would out of town next week, but that she would have the trial study contact nurse stay in touch with us next week to let us know if everything was still on schedule, or if there are any problems.  The drug company is to do an inspection and final approval on April 10. His BMT doctor asked us how soon we could get a flight to New York through The Corporate Angel Network, in the event that there would be a complication, and the drug study start date would get pushed back at Cleveland.  In that case, we would have to go back to Memorial Sloan Kettering in New York to begin the first month of the study there. 

In a way, we are still in limbo about where we need to go for the study.  If, everything goes according to schedule, Todd will start the study at the Cleveland Clinic on April 13, 2015.  If there is a problem, and Todd can't start the study at Cleveland that week, then we will be returning to New York (likely on April 20, 2015). 

Several people have expressed their concerns about Todd returning to Cleveland, since we LOVE Memorial Sloan Kettering and can't praise Dr. Stein enough.  Of course, we would rather see Dr. Stein and go to MSK, but Todd feels the traveling to New York and back so much that first month would be very taxing.  I think driving to Cleveland three and half hours each way is more taxing than flying and driving in, but going to New York might require more overnight stays than Cleveland.  This would be harder on the family in general too. I like Cleveland Clinic; they have been very good to us, don't get me wrong, but I really like Dr. Stein and Memorial Sloan Kettering.

If you have ever noticed, that up until this point, I have not used any of Todd's doctors' names just to be sensitive regarding anything negative I may say.  Dr. Eytan Stein, however, I have introduced you to through the many articles and presentation he has done via posts on my blog in the past.  It would have been hard to conceal his name, knowing the work he has done with this trial drug study.  I'm so happy that I have nothing say but GOOD about him!  This is the kind of doctor you thank God for.  I believe that he serves God by serving mankind.  You can tell he has a servant's heart with compassion for his patients and their families.

Todd's BMT doctor feels we should wait on getting rid of his Hickman catheter just yet.  Once the trial gets started, we are going to re-visit the issue and there is a good chance that they will remove the Hickman and put in a port for the blood draws.  This would require a lot less care (no daily flushing and weekly cap and dressing changes done by me) and it would be more comfortable for Todd in general. With it in, he can't get it wet not has he been able to sleep on his stomach since he had it put in last year.  It would also take away an avenue for an infection to get in.    

Tomorrow, Todd goes in to Miami Valley to see the Respiratory Therapist to get a breathing treatment of his Pentamidine. He may also go to the Cancer Center to have his blood counts checked to see if he needs a transfusion.  Then, we are all going to our first all-family counseling session.  I'm not sure if I like the psychologist just yet; time will tell.

I have spent most of this week cleaning up and decluttering the house, so we can get ready to put it on the market.  I've also started typing up a selling sheet, as we intend to list our house for sale by owner. Please be in prayer for this entire process.  It is stressful and a bit sad to know how much of our belongings will have be sold.  I need to also plan a garage sale soon, so I can thin out the garages and some smaller items in the house.  Truth be told, I will likely have to have a moving sale too, after we sell. 

We are looking forward to spending Easter with our children and my parents. May God bless you as you celebrate Christ's Resurrection! And, to my Jewish friends, I wish a Blessed Passover. Thanking God for his grace day by day.