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.