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.