Treatment Timeline: September 25, 2016 - Present

I wanted to make a post of Todd's treatment by date and day for me and others to keep track of our progress.  I plan on updating this from time to time.  I'm sorry for not keeping up with posts here, but things have been crazy busy every day.  The time goes so fast and it is easy to lose track of the days.  The Blogger App on my IPhone has also not been working, which has made it difficult to post; this means I have to do it on my laptop only. 


September 25, 2016:  Todd taken to the ER at Soin Medical Center, Beavercreek, Ohio.  Diagnosed with Splenomegaly, low CBC counts, and blasts in pheriphal blood. 

September 25 -29, 2016: Admitted to Soin Medical Center
September 29, 2016:  Discharged from Soin; Fly to Houston, TX.  Taken to ER at MD Anderson Cancer Hospital and Admitted.  Diagnosed with MDS with Secondary Acute Myeloid Leukemia.
October 4, 2016: Treatment Decided.
October 5, 2016: First Day of Induction Chemotherapy.  DAC + CIA; 5 + 5 day regimen.
Dr. Stefan O. Ciurea, MD, Transplant Doctor came in for Bone Marrow Transplant consult.  Suggested testing the kids for Haplo Match. 
October 5- 9, 2016: Days 1-5 of DAC chemotherapy
October 10 - 12, 2016: Days 6 - 8 of Idarubicin Chemo
October 13- 14, 2016: Days 6 -9 of Clofarabine. Ted Cade, Paul Cade, and our 3 kids submit DNA/HLA blood tests for bone marrow transplant match.
October 10- 14, 2016: Days 6 -10 Cytarabine
October 14: Last day of Chemotherapy. First Lumbar Puncture and Intrathecal Chemo: Methotrexate
October 18: Second Lumbar Puncture and Intrathecal Chemo: Cytarabine.  Discharged from Inpatient Stay at MD Anderson
October 18, 2016 11:10 Todd starts running a fever.
October 19, 2016 Todd to ER at MD Anderson.  Re-admitted to Transplant Floor 17.
October  21   : Moved to Floor 16; Room 1678
October 24: Discharged from Hospital 2nd time. 
October 24 - Present Staying at Springhill Suites by Marriott, Pearland, TX 
October 26, 2016.  First Out-patient Fast-Track appointment.  Platelets needed (2,000) along with potassium and magnesium. Hemoglobin 10!  No whites or ANCs.  Received platelet transfusion in ATC.
October 31, 2016.  Bone Marrow aspirate.  Cycle 1, Day 28 Induction Chemo DAC + CIA.  Results: blasts at 20%

NOVEMBER 2016

November 4, 2016.  First day Todd had 0 platelet and 0 White Blood Cell counts.
November 5, 2016.  Todd runs a high fever and is taken to ER.  Is admitted to Hospital. Has a xrays and CT of head.
November 6, 2016  Confirmed fungal sinusitis infection in right sinus.
November 8 2016 another follow-up bone marrow from DAC-CIA induction. 
November 9, 2016 BM aspirate results at 38% blasts.
November 14, 2016  First hyperbaric chamber treatment.
(Nov 14, 15, 16, 17, 18, 21, 22, 23, 29, 30) 10 days of hyperbaric treatments at Memorial Herman.
November  18, 2016  White cell transfusion from donor.
November 20, 2016  Todd spikes a high fever; maybe from the white cell transfusion. Started new round of IV Antibiotics.
November 22, 2016.  Started Second type of chemo treatment to fight MDS/AML.  Day 1 of DAC
November 22 - 26, 2016. Day 1-5 of DAC
November 22, 2016.  Bone marrow biopsy: blasts decreased to 24%.  Maybe due to a late response from first round of induction chemotherapy.
November 23  Started second chemo regimen along with 5 days of DAC: Venetoclax (Venclexta ) 100 mg tablet per day with Posiconozole and Voriconozole tablets added; continued Ambisome antifungal IV treatment.
November 30, 2016.  Todd is discharged from the hospital to outpatient care. Last hyperbaric chamber (10th) treatment.  First note of an abnormal EKG.

DECEMBER 2016

December 2, 2016.  First outpatient appointments post-discharge from third hospitalization.  Ambisome infusion, CBC labs, reviews, every Monday, Wednesday, and Fridays; along with some Sunday transfusions of platelets.  Some infusions of Potassium and/or Magnesium infusion balls sent home. 
December 2, 2016.  Appointment with Dr. Christopher Benton
December 3, 2016.  Move into Apartment on Brompton Road, Houston, Texas.
Dec 5, 7, 9, 12, 2016: Outpatient appointments.
December 9.  Dr. Benton came by ATC and increased Venetoclax dose to 200 mg. until Sunday.
December 11.  Increased dose of Venetoclax to 400 mg. (no -azole drugs)
December 13, 2016.  Appointment with Infectious Disease Dr. Shelborne; Must continue on Ambisome or fungal infection could become invasive.  Was shown to be invasive from first biopsy of the sinus, but infection was caught very early.
December 13.  Bone Marrow Aspirate.
December 14.  Dermatologist Consult with Dr. Pacha.  Biopsied spot on right shin for fungal infection.  Out patient appointments: CBC/LAB, review, Ambisome, 2 units of RBC; 1 unit platelets and ball infusion of magnesium.
December 16.  Outpatient appointments including Dr. Benton to review bone marrow aspirate results, check on continued care at MD Anderson due to change in medical coverage beginning Jan 1 2017.  Sample was not good to look at; only could estimate 10% blasts. Flow cytometry was done in addition to get better counts.  These results showed 33% blasts. 
Dr. Benton recommended a second cycle of Day 1-5 DAC plus 400 mg of Venetoclax.
December 18.  Day 1, Cycle 2 of DAC plus 400 mg. of Venetoclax.  DAC given by outpatient infusion for five days.  December 18-22.

December 23, 2016.  Fly home to see family for Christmas.

JANUARY 2017

January 2. Bone marrow Aspirate scheduled.

January 8.  Day 21 of Cycle 2 DAC + Venetoclax.

January 15.  Day 28, Cycle 2 DAC + Venetoclax.

January 16.  Bone Marrow Aspirate scheduled. 

                   

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. 

Day 2: Testing for Trial Drug AG221 in NY

We slept until about 9:00 am on Tuesday, March 24, 2015. We took our showers and strategized about where to eat at a good sit-down breakfast, but, before we could  decide, Todd noticed that Dr. Stein's office had called and left a voice message for him to call them. He was told that he blood results showed his hemoglobin was low  (7.0) and that he needed a transfusion. They wanted us to come in earlier than noon so they could work it into the schedule.

We grabbed some quick breakfast (muffin, coffee, juice, and yogurt) from the  cafe in our hotel lobby and headed to the hospital around 10:30 am. First up, we had to go to get the type and screen to order blood for the transfusion.  Then, we headed over to Dr. Stein's office, where we met with the doctor to sign the consent forms.  Once signed, we were able to ask additional questions.  I had just a few after yesterday's visit.  I asked for his opinion on the use of chelation therapy to reduce iron in Todd's blood.  He said, that he thought it interesting that local oncologists typically recommend it, but that he nor other oncologists/hematologists at larger cancer facilities do not.  He said that the research shows that the use of chelation therapy has NOT been attributed to living longer, but has side effects, and for this reason, he doesn't recommend it.

I also asked about adding his Pentamidine treatments back in.  Todd was getting this medication to help prevent a pneumonia caused by Pneumocystis jiroveci (carinii), but since we haven't been back to Cleveland, he didn't receive it this month.  We had met with the pharmacist yesterday, before seeing Dr. Stein, to discuss all the medications and chemotherapy Todd has been on.  It is important to document because using chemo or certain medications before the study or during the study, can disqualify him from the study.  There was some question as to whether he could continue this medication or if he needed to switch to a similar drug in pill form.  So, Dr. Stein clarified that he can have Pentamidine if it is inhaled only, which is what he has been doing.  He recommended we have it set up to be done by Todd's local oncologist.  I noticed though that they had it set up there at Sloan Kettering for next week just in case.

After finishing with Dr. Stein, we were reunited with his research assistant, who asked Todd some questions about his current symptoms, to use as a baseline for comparison after treatment of the drug begins.  Then, another assistant, took us under her wing and let us know she would be there to guide us through the day's schedule.  First up, was the echo cardiogram and EKG.  Next, we tried to fit in the blood transfusion, but he had to go get the bone marrow biopsy next.  It was probably after 4:00 p.m. before he could settle in for the transfusion.  I ran down and got us some "lunch" at the cafeteria.  Their procedures for transfusions are a bit different from anywhere we had been.  They wouldn't run the transfusion IV at full pump speed (240) after the initial 15 minutes.  The nurse said that since Todd was a new patient, they were being cautious and might have been able to run it at 200 if he had been there before, but that they never go over that.  So, running the blood at a speed of 175, it took about an hour longer than normal, or 2  1/2 hours for one unit.  At first, they were only going to give him one unit.  Apparently, that is the new standard unless the patient is lower than 7, but we argued that in all the times he had transfusions, he had never received just one unit.  So, the nurse called Dr. Stein and he approved the second unit.  He was concerned about Todd's oxygen levels in his blood, since he would be flying the next morning. 

Todd didn't finish getting both units of blood until 9:00 p.m.  Once again, we got take out and ate it in our room.  It was another long day, but Todd was feeling better.  We went straight to bed, because we had to be at our shuttle stop at 7:00 a.m. the next morning.  Everything went according to the schedule the Corporate Angel Network set up for us.  We arrived at Teterboro airport and flew out around 8:45 a.m. and landed in Columbus, Ohio around 10:15 a.m. We had to drive back towards home to go to two appointments, one at noon and the other at 3:00 p.m., so Todd could get his IV antibiotic treatment at the Cancer Center. 

We wanted to thank everyone who helped us with the trip: The Corporate Angel Network and their generous participating companies and Beau Townsend Ford, (especially Jamie, Chris, and Kevin) who paid for our hotel stay both nights and helped with medical bills that were not covered until we reached our deductible. 

What to expect next:
We are expecting to hear from Dr. Stein's office by this Friday, March 27, or Monday, March 30, 2015 to hear if Todd was approved.  His test results have to be examined and his case brought before the drug company's board and the Sloan-Kettering's board.  Once we get the call, we will return to New York next week, either Monday, March 30, or Thursday, April 2.  We will need some time to arrange flights, rides, and hotels.  We will need to return to Memorial Sloan once a week for the first month and then only twice per month or every 15 days after that.  We hope that the Cleveland Clinic will be an approved study location by then, so we can transfer his case study there, which would just require two trips up to Cleveland. 

Locally, he will finish out the last few days of his IV antibiotic treatments and then he is scheduled to see the local oncologist on Monday, March 30, if we are not going to New York.  They will also run a CBC to see how his counts are and order any transfusions if necessary.

Other news:
It was interesting that I was exploring reasons for Todd developing his MDS a few blogs ago, when the MDS Foundation posted a talk regarding this exact subject: http://www.onclive.com/onclive-tv/Dr-Komrokji-on-MDS-Risk-Factors-and-Preventative-Measures  While it is hard to hear everything the doctor is saying, because of his accent, the basics of his talk is written out.  So far, it would appear that smoking cigarettes is one of the main causes of new cases of MDS, because of the benzene contained in them.  (Todd has never smoked though).  If you are a smoker, can I beg you to find a way to stop?  I have watched three grandparents die from smoking related diseases and cancer. There is so much proven research out there that shows that smoking causes multiple types of of cancer. 

They also know that prior chemotherapies can also lead to MDS (like Robin Roberts from Good Morning America who had breast cancer first, and developed MDS from chemotherapy treatment). 

I have finished my semester classes, which will give me more time to work, care for Todd, and get our house ready to sell.  While I dread the idea of selling our house, knowing how traumatic and challenging it is going to be, we just can't afford to stay here.  If anyone is willing to help us do some house repairs or box-up things to move, sell, or donate, please let me know via email, Facebook message, or phone call.  We will also be looking for a 3-bedroom place in Beavercreek, OH to rent, if anyone knows of a suitable place. 

In addition, I have stopped looking for a full-time job right now, but I will be substitute teaching until the end of May.  I may look for something else part-time after school lets out.  It is really hard to plan anything as we seem to be living day by day or week by week.  But, both of the older girls are looking for summer jobs, if anyone can offer them something.

Thanks to everyone who has helped us with meals, rides for the girls, and I even received a gift card for a message, which I had asked for!  We appreciate your love and support. 

Appointment Set & Gene Mutation Confirmed

It's been so long since I've blogged, that I forget where I left off!  Last week was so busy!  On Wednesday, March  11, 2015, I was called in to substitute teach.  When I got home, Todd told me that he had talked to the bone marrow transplant doctor in Cleveland and that they had the rest of his bone marrow biopsy results back.  The result we needed the most was the confirmation that he still had the IDH2 gene mutation, that qualified him for the AG-221 drug study.  Unfortunately, they told him that there was not enough DNA from the biopsy to complete the test!  We waited two and a half weeks to hear this!  His cytogenetics did come back showing just the one same 5q chromosomal deletion as his first biopsy post-transplant.  This was good news, but the doctor still did not think that the medication Revlimid used to treat patients with this single 5q deletion would work, because he had multiple complex deletions prior to transplant.  The problem with attempting to treat Todd's cancer with this drug right now is that it ONLY treats this one deletion.  While it could wipe this one out with constantly taking the medication, it won't prevent the other deletions/chromosomal abnormalities from coming back at any time.  This would be a waste of valuable time and somewhat counter-productive.

His BMT doctor thought it would be a good idea to see if his oncologist at Cleveland, who originally ran the DNA testing that discovered the IDH2 gene mutation, might still have a sample left of his marrow.  So, she recommended calling him to see what he suggested.  This doctor was Todd's main oncologist/hematologist prior to transplant.  We got to talk to him shortly afterwards.  He gave us recommendations of other doctors in the field that he trusted because of their experience.  One was at Northwestern in Chicago where they are conducting the trial study; another was at MD Anderson in Houston, Texas, also doing the study; and a third was a former fellow and student who now works at Memorial Sloan Kettering.  He knew of Dr. Stein and informed us that he and any other doctors assigned as the primary investigators of the study were being paid by the drug company Agios who is conducting the studies.  (This is called full disclosure).  We knew this, but in my search without a recommendation in Nashville, I called Dr. Stein's office anyway, because at least he was familiar with the drug and its results.  He told us that Dr. Stein was young and that we may want to consider a doctor who has been in the field longer, but that we should go wherever we could get in first!  Just because we sent records did not obligate to keep an appointment.  He also confirmed that it would likely be at least a month or two before the drug study would be at the Cleveland Clinic. 

When we asked about the Todd's former bone marrow samples, he said he had them in a freezer, but that whoever does the study would probably want a recent result.  He recommended our local oncologist collect a sample of peripheral blood cells to send to special lab in California to get the DNA IDH2 gene mutation results from that.  They took this sample last Thursday and I called to follow-up that they sent it to the right lab.  (Ugh...)

So, we started looking up names and phone numbers of places and doctors to call.  First, we had to confirm with the insurance company that these doctors and hospitals were in-network.  We have learned that routine blood work and other tests will not be paid for by the drug company during the study, so it is important to make sure you have coverage for the incidentals.  All three recommended doctors were in-network. 

Next, I called the doctor at Northwestern in Chicago since it was closest.  Unfortunately, the doctor would not be able to see us until April 1, 2015, which I thought was too far out.  Then, we called MD Anderson, but before we could schedule anything, they had to get our insurance information and process a request for coverage.  Since then, we have been playing phone tag, with no appointment scheduled yet. I tried to call them again today, but they refused to talk to me, stating that they had to talk to Todd first to get permission to talk to me.  We went round and round for ten minutes; I tried to hand the phone to Todd during his blood transfusion, but we can't get a signal in his ATA room and of course, the call was lost. (I had been standing in the hallway).  MD Anderson might be the #1 ranked cancer hospital or whatever, but I'm not impressed with their scheduling and staff!  Who would even want to go there after all that? 

While all of these calls were going on, Dr. Stein's office called and asked for a special request that Todd's pathology slides be sent to him by an express delivery service.  I told her we didn't get the results back from the biopsy confirming the DNA, but she assured us that Dr. Stein could always perform a bone marrow biopsy at the appointment.  So, I called both the local oncologist's office and Todd's BMT doctor in Cleveland to get the necessary records sent to MD Anderson and the slides to Dr. Stein. 

The next day, I called the Corporate Angel Network about arranging a flight to New York for the appointment on Monday, March 23, 2015 at Memorial Sloan Kettering with Dr. Stein.  They were able to take down all of our information and get Todd registered for a flight.  They told us that they could NOT guarantee us a flight for that day, so that we would need to have a "back-up plan."  She asked us what our back-up plan was, and I said driving I guess!  We told her we could return the same day, but she said most flights leave in the mornings, so that means we will have to get a hotel room for the night.  Since then, we talked to our pastor when he came to the house to visit, and he advised us NOT to drive into New York City.   That it was extremely difficult and parking too cost prohibitive.  Unfortunately, buying two last-minute plane tickets will also be cost prohibitive. 

The Corporate Angel Network is supposed to notify us 24-48 hours ahead of time if they were able to secure a flight for us.  I need to start working on a "back-up plan." I can call the other flying services for cancer patients and/or our pastor said he knew someone who was a pilot who may be available.  Today, our local oncologist told us that some airlines are willing to sell discounted airfares to cancer patients for appointments with some kind of doctor's note.  We could try this or just cough up the money (what's a little more debt?).  If none of that works, we hope to have a second appointment secured somewhere else.  (Looks like it won't be MD Anderson).  I'm thinking about calling back to Northwestern in Chicago and seeing someone else or just taking the April 1 appointment if it is still available.  At this point, I am going to do whatever it takes to get him in somewhere else!  And if we aren't happy with the opinion of the doctor we see next, then we will keep going until we are.

Todd's counts were not good last Thursday, March 12, but he didn't need any transfusions that day because his hemoglobin was at 8.1.  We would normally feel happy about this news, but not that day.  Todd had already felt run down and not getting a transfusion then meant having no energy until they could get blood work again on Monday, March 16.  His platelets were good, but his ANCs and white counts were "non-existent."  The nurse had me a bit scared and went to talk to the doctor about having his Hickman catheter removed (because they can be a magnet for infections), but we did not agree with this.  His Hickman looked good and he wasn't having any problems with it.  It makes transfusions and blood work so much easier on him that having to poke his arm which takes weeks to heal.  They did caution us though to take his temperature often throughout the day.  They told us that the guidelines for fevers had changed from calling with a temperature of 101.4 or higher to 99.5 or higher!  This also seemed overkill, because he had been running a low grade fever off and on.  We understand the risk of infection, but felt that running him to the hospital for a low grade fever only exposed him to more infections there than at home.  So, throughout the weekend, we took his temperature about three times per day.  If his fever went above 99.5 we waited 30 minutes and took it again.  If it went up or stayed up then we agreed we would call, but we didn't have to.  His fever did get up to 100 but only when he had been sleeping in the warm bed.  Once he got up, it went back down to under 99 degrees. 

We were due to see the doctor and have his blood work done this morning, Monday, March 16, 2015.  His hemoglobin was at 7.3 which was low enough to warrant a transfusion (<8.0).  His platelets jumped up to 70,000! But, his whites were still barely on the radar at .2. 

Here we sit, once again in the Advanced Treatment Area (ATA) of Miami Valley Hospital getting his two units of blood.   I pray it will energize him for several days.

For some reason, he is still scheduled to return to the Cleveland Clinic for treatment and to see his bone marrow transplant doctor this Friday, March 20, 2015.  I guess it is part of his monthly post-transplant check-up, but I hardly see the point, except that it will give us the opportunity to talk to his BMT doctor face-to-face and to get his breathing treatment of Pentamidine (anti-fungal) to prevent any lung infections or pneumonia.

Post script. The blood work taken last Thirsday confirmed that Todd has The IDH2 Gene mutation.  So we are good for the study!  Now we need to pray for the airfare or positive response from Corporate Angel Network 

Todd admitted to Miami Valley Hospital February 2&3, 2015

So, much has happened, I finally had to close out my last blog without including everything!  I tried to work on that post for the past two days, but just didn't have the energy to finish it.

Todd's counts have come up some, but he still needed a unit of blood this morning, Tuesday, February 3, 2015.  His whites went up from .9 on Monday to 1.1; his platelets went from 21,000 down to 13,000 yesterday and then up a bit today to 14,000; his hemoglobin went from 6.7 after arriving to 7.6 after his transfusions yesterday.  His hemoglobin was still at 7.6 this morning, so they are currently giving him 1 unit of blood.  From what I can tell, his ANCs were at .6 and have risen to .8 then to .9 today.  So, he is above neutropenia level (<500).

He learned from the physician making rounds, that his blood cultures came back negative for infections.  So, the reason for the fever was likely just a neutropenic fever.  (See http://www.uptodate.com/contents/treatment-of-neutropenic-fever-syndromes-in-adults-with-hematologic-malignancies-and-hematopoietic-cell-transplant-recipients-high-risk-patients?source=see_link)

I put in a call to his BMT doctor in Cleveland yesterday, just to let her know what was going on.  She called me back about 4:00 p.m. to discuss the situation.  First, she said Todd was welcome to come back to the Cleveland Clinic if we weren't happy with Miami Valley.  She thought Todd passed out probably because of the low blood pressure more so than the low hemoglobin, but it could have been both.  When I asked if she was still planning on having him start his 3rd round of Vidaza on Monday, she said yes.  As long as his ANCs are above .500 she was still wanting to proceed.  I told her I was concerned about his counts dipping even lower after resuming treatment.  She said, it would still be acceptable as long as they could be managed by transfusions, even if he has to get them often.  She has decided to though to move up the bone marrow biopsy to a week after this next round of Vidaza.  Nothing was said about doing a 4th round.

What was the most interesting information was that she has continued to check into the idea of enrolling Todd in that study for the new medication called AG-221 by Dr. Eytan M. Stein at Memorial Sloan-Kettering Cancer Center.  http://www.mskcc.org/cancer-care/trial/13-154   (see Post:  http://toddsmds.blogspot.com/2015/01/recommendation-stay-course-with.html).  She researched Todd's medical records and found that Todd does have the gene deletion that is required to enroll in the study.  In addition, there are no disqualifications for patients who have had a bone marrow transplant.  As long as they have been off their treatment regimen (chemotherapy) for at least 14 days, they can participate.  While the gene testing was done early on with Todd's initial diagnosis for clinic studies with his oncologist at the Cleveland Clinic, the test can be repeated "officially" for the record.  She said that the Cleveland Clinic has not been approved at this phase of the testing to conduct the trial, but she said the closest location that is offering the trial is in Chicago, which isn't too far.  While she's not ready to pursue this avenue right now, she likes the idea of having this option "in our back pocket" just in case.  I thought this was encouraging news.  I like that she listened and was open to researching my suggestion.

No appointments have been scheduled for Cleveland Clinic yet.  She's waiting to see how this week and next week goes.  But according to what she said, we will be heading back to Cleveland for a treatment appointment, bone marrow biopsy, and consultation with her around the last week of February.

Well, it is almost 2:30 pm and Todd just got his discharge papers.  He is changing clothes and we are getting ready to go home!  He has to follow-up with his local oncologist, or rather the physician's assistant (because his local oncologist is on vacation climbing Mt. Kilimanjaro) on Thursday morning at 9:30 a.m. at their office at Miami Valley South.  I hope it goes smoothly and that they don't give him a hard time there about collecting his CBC.

His third round of Vidaza is still scheduled starting next Monday, February 9, 2015.  They will do a CBC before starting.  So, between these two appointments, they should be able to stay on top of his counts to see if he needs any transfusions.  I think Todd has learned the hard way how important this is.  He said if he would have gone in on Friday or even Sunday morning to get his blood work and transfusions done, he wouldn't have had to spend the last two days in the hospital.