CELEBRATING 25 YEAR WEDDING ANNIVERSARY AND GETTING TO NEW YORK

Today is our 25th Wedding Anniversary
September 21, 1991- 2016

PERSONAL NOTE:

It was a whirlwind courtship, but today we celebrate 25 years of a life together that has brought us many blessings and challenges. I would like to wish we could have another 25 years together, but none of us are guaranteed a tomorrow. No woman could ask for a better husband than Todd. He worked hard and has always devoted his life to God and his family. Cherishing every day and praying we have many more years together. So thankful our marriage was blessed with the greatest 3 kids we could ever hope for.

GETTING TO NEW YORK FOR TREATMENT:

Trying to get Todd to New York on a budget is proving challenging.  I’ve done it once before, and I’m going to have to do it often if he gets accepted in the trial for AG881 at Memorial Sloan Kettering (MSK). 

At first, the receptionist for Dr. Stein at MSK told me that Todd would have to come in two separate dates: one for the consult and another for the screening and by the way, Dr. Stein was only in on Mondays and Thursdays.  I told her that we had seen the doctor before in a similar situation when he was getting screened for AG221, and that we were able to have back to back appointments, one day for the consult and the next day for the screening so that we could do it all in one trip.  I explained that we were coming from Ohio and why should we have to come on two separate occasions and have to schedule 4 flights instead of 2!    This was Thursday, September 15, 2016 when she called to schedule Todd’s first appointment set for Monday, September 26, 2016.  I called back the next day and tried to convince them to let us have too appointment dates back to back.  She said she would give the message to someone on Dr. Stein’s team.  I didn’t hear back from anyone that day, nor Monday morning.  So, I called back Monday and reiterated the circumstances and said I never heard from anyone.  She said she would send out another message and have the doctor or someone on his team call me back.  His trial assistant, Emily called back later that afternoon and said of course we only needed to make one trip and that we could do everything in one day!  She said they make this exception for patients who travel long distances!  Hello?  Why didn’t the office person tell me this to begin with? 

There are still a few concerns about being able to keep the Monday morning appointment there.  First, it is at 9:40 a.m.!  That means we would have to get up very early and drive to Cincinnati or Columbus to get on a Corporate Angel Network Flight (CAN), if one is available and can get us there that early with a 45 minute drive into the city!  Corporate Angel Network cannot request a flight until 3 days prior to departure.  We can’t go up the night before because none of the corporations on the network fly on the weekend.  I won’t hear back from CAN until Thursday or Friday at the earliest to see if they are able to secure us a flight.

Second, MSK is waiting to confirm that they can add Todd to the new cohort of the trial which opens on that day, Monday, September 26.  They have been reviewing the current cohort and there can be delays if there are any concerns.  Emily is supposed to call me back and let me the status of this.

COHORT:  A group of persons or animals of the same species with a common characteristic, set of  characteristics, or exposure, who are followed for the incidence of new diseases or events as in a cohort for a prospective study. (Segen’s Medical Dictionary, 2011).

Third, getting lodging once everything is confirmed is also on hold.  I hate to book a hotel room until we get the first two confirmations.  I tried to get the social worker at MSK to work with the Hope Lodge there in New York City to reserve us a room.  However, after hearing back from the social worker today, we were informed that we would need a minimum stay of 3 days of “treatment” before we would meet the criteria for staying.  Since we only need one night this time, it’s a no go.  I did tell her that we may need to stay 3 days later, once the trial starts, but it won’t be often. 

From what I gleamed from Emily, Todd would have to start the trial with a Day -3 scenario, like he did with the AG221 trial.  This is the part where they experiment taking the medication with or without food and then do hourly blood draws for 10 hours.  I remember these days from the last trial with dread!  Talk about a long day, especially for Todd, in his current condition of severe fatigue.  After the first week, we would have to return weekly for the first month.  After the first month, appointments every two weeks for the first 4 months.  Then, just monthly appointments!  This is a much easier schedule than with the AG221 study at Cleveland where Todd had appointments for every two weeks for the first year!  That was crazy; but, you do whatever it takes!  Todd was doing so well on the drug, we hated to complain!

None of this preparation can happen fast enough. Todd continues to struggle with fatigue and lack of appetite.  The local oncologist wanted Todd to start coming in the day before transfusions to get the CBC and type and screen. This is supposed to give the blood bank a day to obtain and prepare the blood products ahead of time.  Plus, they have never liked the idea of making Todd wait for hours for the blood to get to Soin from the blood bank. 

Dr. Hamilton, in Cleveland, did not want Todd to wait 7 days to get a CBC because his hemoglobin was so low the last time they waited a week.  Arrangements were made for him to go in late Monday morning, September 19, to get the CBC and type and screen done and to have blood drawn for a special myelo-mutation panel that would identify all genetic mutations, not just the IDH-1 or IDH-2.  Dr. Hamilton wants to use this as a tool for finding any other studies that Todd would be eligible for, based on the mutations he has.

The results of the CBC were disappointing.  Less than 5 days from his last platelet and blood transfusions, his counts were so low that he needed another 2 units of blood and 1 unit platelets again!  His hemoglobin was at 7.5; platelets at 12,000; Whites at 1.1; and ANCS at 0.6.  They ordered his blood products for the transfusions set up for this morning, Tuesday, September 20, 2016 at 7:30 a.m.!  This is very early for Todd.  It took the nurses a good hour and half to get him situated in his Universal Care Room and have the blood brought in.  He didn’t have to be there until 6 or 7 pm today, but he was still there until 2:10 p.m.  It still took him about 7 hours to get the transfusions.  I’m not sure if it was really any better for him to come in two days, but I guess it was better for the hospital and staff and maybe the blood bank, I don’t know.

I think we have decided to put our house back on the market again.  A realtor came to the house and we will be in repair and clean-out mode now for some time.  Apparently, the inventory for houses in our area is low, but the turnaround time from listing to selling is averaging almost 300 days according to her graph report. I can’t imagine keeping everything “show-ready” for up to 10 months!  The whole prospect feels every inch of me with apprehension, but I’m doing it for Todd’s peace of mind.  Less stress in keeping up our big house and its expenses.  He worries about the future and my ability to keep everything up on my own.  Goodwill, Beavercreek Bargains, Plato’s Closet, here we come!  I know it needs done; I just don’t have the mental or physical energy and the heart to do what it takes.  I can’t give in to sentiment.  Even more depressing is finding somewhere to move that isn’t a major wreck.  God Help Us!  I mean that sincerely and earnestly. 

NEW DEVELOPMENTS:

This news is crazy, so hang on.  I received a call late yesterday from Emily, Dr. Stein’s trial assistant at MSK.  The meeting that the trial study team was supposed to have with the drug company on Monday, September 19, was unexpectedly postponed for a week with no explanation.  It just wasn’t the meeting at MKS that was postponed, but the meetings at the other four U.S. trial study locations too. 

The meeting was supposed to cover the results of the first cohort of the Phase I trial of AG881, which was a dose expansion phase, defined as “A progressive increase in the strength of any treatment (e.g. a drug or radiation dose), to improve its tolerability to maximize it effect.”  (Free Dictionary 2009).

This is when they give different patients different amounts of the drug: 50 mg, 100 mg, 200 mg, 400 mg, and 600 mg until the maximum tolerated dose is established.

MAXIMUM TOLERATED DOSE:The highest drug dose that can be given without causing adverse side effects in most recipients.  (Segan’s Medical Dictionary, 2011).

The second cohort of a Phase I, is usually a patient expansion.  We are hoping to get Todd a slot in this part of the trial.  Now everything is on HOLD!  The appointment for Monday, September 26, 2016 with Dr. Stein has been cancelled too.  We are hoping to go instead on Thursday, September 29, 2016, IF the news and instructions from the drug company from the rescheduled meeting that Monday allows new enrollees. 

I guess speculating doesn’t do much good, but I can't help it. This could be good news or bad news.  They could have reached the maximum tolerated dose and have decided to go on to Phase II.  This would be good news since Todd would not have to be exposed to dangerously high dosages, but it could take weeks or maybe months to get the new Phase up and running.  The worst case scenario would be that the drug didn’t work at any dose for the initial set of patients, but this would be highly unusual.  The best news would be that they just needed to reschedule the meetings for a week and the drug company will call the Trial Centers/Hospitals and let them start pre-screening for an additional number of new patients for the next cohort or Phase. 

The problem for Todd is time.  He needs to get on a treatment soon.  The two-week “wash-out” period of being drug-free in preparation of starting a trial will end tomorrow, Thursday, September 22.  Even though I feel desperate to get him on some kind of treatment, we can’t jeopardize ruining this wash-out period and not being ready when next trial slot opens up. 

So, we wait.  Wait to hear from Dr. Stein's team and continue to get Todd any transfusions whenever he needs them.  Prayers for the situation to be resolved and settled would be appreciated, as well as for protection for Todd against getting an infection or virus.  

References:

cohort. (n.d.) Segen's Medical Dictionary. (2011). Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/cohort

dose escalation. (n.d.) Medical Dictionary. (2009). Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/dose+escalation

maximum tolerable dose. (n.d.) Segen's Medical Dictionary. (2011). Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/maximum+tolerable+dose

DESPERATE FOR A NEW TREATMENT PLAN

We finally received the test results this week that the doctors needed to begin discussing a game plan of treatment for Todd.  I was getting anxious to know the preliminary bone marrow biopsy results, so I called Dr. Hamilton's office at the Cleveland Clinic on Tuesday, September 13, 2016, to ask if she had got them back from the lab yet .  They are usually back the following Friday or Monday after the biopsy on Wednesday. I was told that the labs had been running behind, but they would check with Dr. Hamilton.  She called me around 12:00 that afternoon with the news:  His blasts counts were up to 8%.  Not the news we wanted to hear.  I was glad they weren't higher, but disappointed they had jumped from <1% in July to 8% now!  The air conditioning in our office had been out; it was about 80 degrees in there.  So, when I got this news, I had to sit down.  I felt dizzy and faint.  I was already overheated, needed to eat, and then got this news.  I was shaken.

I asked the doctor if she thought the blast counts would continue to jump up that much again (desperate question), but she of course she wasn't sure what they would do, but she tried to reassure me that she didn't think they would skyrocket past the 20% criteria classification of Acute Myeloid Leukemia (AML), but there are no guarantees with cancer.  She said that these results confirmed what we all had suspected: the cancer was no longer responding to the AG221.  I had asked her at the last appointment if it was possible that the drug could still keep his blast counts down even though there was no hematological response in the blood counts. She said, it was possible, but she didn't think it was likely, nor did she think that it would help him to continue taking it for that hope only.  It wouldn't make that much of a difference.  So, the biopsy results confirmed this: continuing the drug was not keeping the blast counts down anymore either.

At this point in the day, she still had not received the genetic panel results back from the specialty lab. She still wanted to wait until she got these back and spoke with a few colleagues before making a treatment recommendation.  She also said that they were still waiting to hear back from Celgene, the drug company of the medication Revlimid, regarding an estimate of how much we would have to pay for the drug under our current insurance. I brought up the option of Vidaza, which Todd has been on before to reduce the blast cells, and she confirmed that this may still be an option.

Dr. Hamilton asked me if I wanted to tell Todd the biopsy results or if I wanted her to call him.  I was very busy at work, and wanted Todd to have the opportunity to ask any questions or discuss any concerns with her; so she called him and gave him the news.  We had a chance to talk on my lunch break and he said the blast counts being at 8% was about what he expected.  He was surprised it wasn't worse.  I tried to encourage him; we still had options and there is a team of doctors working on getting a new treatment regimen together for him.  We would go or do whatever it takes!

He had been extremely tired since his last transfusion of one unit of blood at the Cleveland Clinic last Wednesday, September 7, 2016.  This week's appointment on September 14, was at the local oncologist's office for a CBC to see if he needed a transfusion.  I knew he was weak, but he refused a wheelchair and walked in on his own.  By the time we got back to the treatment area, he felt like he was going to pass out.  They hurried and got him into a bed and covered him with warm blankets and placed a cool washcloth on his forehead while they prepped his port for the blood draw.  I got him a Boost shake to drink, because he still hasn't had much of an appetite.  While waiting for the CBC results to come back, I called Sam, the trial nurse at Cleveland Clinic to see if they had received word from the genetic mutation panel because the local oncologist had told Todd that they received them the day before.

Cleveland had received the results, but they were so vague that no one really understood them.  Dr. Hamilton had called and asked the pathologist to explain them to her.  Of course, he hadn't called her back yet.  The results looked positive for the IDH2 mutation, which he had prior to treatment with AG221, but they were not sure about the IDH1 mutation.  We started discussing the trial of AG881 in New York, that Dr. Eytan Stein had mentioned.  Originally, I thought Todd needed to have both mutations before he met the criteria for the trial, however, after researching, it only needed to be one or both.  Todd has read a lot about the drug and the drug company AGIOS.  From his understanding AG881 was only a combination of AG221 for IDH2 and AG120 for IDH1.  If he didn't have the IDH1, the AG881 would be worthless, since we knew his cancer had stopped responding to the AG221.  This dashed my hopes of this trial.  I found out later anyway, that he DID NOT HAVE the IDH1 genetic mutation, so this option was seemed out.

Once we got the CBC results back, it was easy to understand why Todd was feeling so weak.  His hemoglobin had gone from 8.3 plus one unit of blood last Wednesday to 6.8 this Wednesday! At first the nurse said his hemoglobin was 6.2 and his platelets were in the teens.  She said the doctor wanted to know if he wanted 1 unit or 2 units of blood.  We both freaked out and said 2!  Of course!  This was the lowest his hemoglobin has been in over a year!  I don't know if it was that low when he was in the hospital last October with the pneumonia!  They usually always give him 2 units if the hemoglobin is below 8.  Todd and I began to question what she had told us.  Maybe she had made a mistake.  Maybe the hemoglobin was at 8.2 not 6.2, then the question of only giving one unit for being under 8.5 would make sense.  So I asked her to double check the results.  We looked at the printed results together.  The hemoglobin was 6.8, platelets at 13,000, whites at 1.2 and ANCs at .6!!!  Every time I see such low numbers, I can't stop the expletive that comes out of mouth in disbelief and anger.  There was no denying it.  These numbers sucked.

When we told Todd the actual numbers, he was in disbelief too.  He began to worry that if his counts were this bad, his blast counts in the marrow had probably increased too.  I wheeled him down to Universal Care and they got him in a room right away.  The nurses there are so awesome!  They really care about the patient and the family.  They always take my phone number so that when I leave to go into work, they can contact me with any changes or concerns.  We've been pretty happy with his care at Soin Medical Center.  They are always worried about how long it takes Todd to get the blood products and the transfusion process, but we have always understood that it takes time and don't mind the wait at all. We always get out of the hospital faster than they predict.  This day, Todd was finished by 6:00 p.m.  I was happy that our daughter Abby was able to come sit with him in his room to help pass the time.  It is hard for me to go into work while he is there, but I know he is in good hands and that I can be there in about 20 minutes if I'm needed.  If anyone would like to come sit with him during the transfusion process, it would be appreciated.  In the future, however, they want him to come in a day early to get his CBC and type and screen and then have the transfusions scheduled for the next day so that they can order the blood products ahead of time and shorten his wait time.  I'm not sure if this is really that helpful because he will have to get up early and go to the hospital two days instead of one, but we are willing to try it.

NEWS FLASH:

This is how fast and stressful everything changes.  While typing this post, I received a call from his transplant doctor, Dr. Hamilton, who finally had her recommendation for treatment to discuss with me.  She had already talked to Todd, but I always have a lot of questions to ask, so she graciously reaches out to me.  She had discussed Todd's case with the other doctors in the Leukemia/Oncology/Transplant area, her colleagues at University Hospitals in Cleveland, and Dr. Eytan Stein at Memorial Sloan Kettering in New York City.

I was shocked to learn that her recommendation was the AG881 Drug Trial at Memorial Sloan Kettering.  I thought this option was OUT!  Apparently, this drug is not what we thought it was, instead, it is a "souped-up, second generation"version of the AG221 he was on.   I was leaning toward the tried and proven treatments or "standard of care" treatments already available (i.e Revlimid and Vidaza) before hearing this.  When I brought this up, she said that although Todd had seen some response to Vidaza in the past, it didn't help much the last time he was on it after his failed transplant. It lowered his blast count some, but it did not help with this blood counts at all.  Therefore, she really didn't consider this a "positive response" to the drug.  With Revlimid, we are limited to it helping the anemia or Red Blood cells only.  Todd's other counts are already dangerously low, and this drug is known to lower platelets, which he cannot afford to have happen since they are already so low he has to get platelet transfusions.

She didn't know much about how AG881 worked or what it contained, but recommended we consult with Dr. Stein.  In her opinion, this is the best option to help increase all three blood counts increase and decrease the blast counts.  We discussed that the treatment options are getting thin.  Her colleagues at University Hospital suggested a second transplant, which Dr. Hamilton feels is still an option we really need to seriously consider.  I told her that I couldn't speak for Todd completely, but that in general we did not consider this a good option; instead, we consider this a last resort after we have exhausted all other options.  I told her I didn't know if we were ready to go the the "hell" that a transplant inflicts.  I told her that personally, I found the option scary.  Not only did it not have a high success rate, but if it did work, then Todd would have to face the possibility of getting Graft v. Host Disease that could be detrimental.  She reiterated that this is the ONLY CURATIVE OPTION.  That every other option is just temporary.  They would obviously use a different donor, but I wasn't impressed with the long-term success rates of bone marrow transplants.  I guess we just need to be careful not to wait too long to take this option; he needs to be healthy enough for a transplant.

This news, that we would have to go to New York, was not upsetting in itself.  However, I called Todd back after my conversation with Dr. Hamilton, and his mind was racing ahead of all the implications and changes in our lives that would be necessary to pursue this trial treatment.  This would mean extensive travel: every week for the first month, then every two weeks thereafter.  We would need resources to go and he would need me to go with him.  My ability to work full-time could be in jeopardy, which means keeping our house would be impossible.  I didn't want to jump too far ahead, and I think we would be smart just to take things a day or week at a time.  We really need to speak with Dr. Stein to see how feasible getting on the study would be.

Putting the house on the market again would be stressful.  I'm not sure I can handle all the work involved.  This time it would be definite; we would keep it on the market until it sold!  I would need lots of help: cleaning out the house, getting rid of stuff we couldn't take with us, boxing up, keeping the house immaculately clean and ready to show, and then finding a new place, preferably one that would be move-in ready.  This is when I broke down into tears.  I know our house is often too much to take care of. I have been mowing the grass and doing almost all the cleaning.  With Lewis back at college and Ellie back in school and sports, and Todd unable to get out of bed, most of the chores are left to me.

Please be in prayer for wisdom for us and the doctors.  That travel arrangements would fall into place.  I've already contacted the Corporate Angel Network about arranging a potential flight and the Hope Lodge in New York City to see if we could stay there instead of a hotel.

Todd's cough is getting worse and he is now limping.  It seems like when his counts get low, certain areas get inflamed, and this time it is his foot again.  He still doesn't have much of an appetite.  The doctor said this was likely from the MDS itself.  Getting him to eat regularly requires great effort.  He has been trying to drink his Boost shakes when he can't bring himself to eat.

Thanks goes out to my parents who are a pillar of strength and help.  My dad (age 69 with congestive heart failure!) has been helping me with yard work.  Todd's mom is still bringing food, but even she is having a hard time walking.  Pastor Chuck Moore at Hillside Chapel has been faithful in staying in touch and visiting Todd.  Our neighbors Dan and Sharon have also been very supportive.

NEEDS:  I hate this part, but we do have needs.  We have a few dead trees in the yard that need to come down.  Neither Todd nor my Dad are able to do this.  If anyone can refer us to someone who could give us a reasonable rate to take these down, it would be greatly appreciated.  I could really use some mulch in the front flower beds, if anyone has extra mulch or has the time to chip and shred our tree branches for mulch, that would be appreciated.  I probably need to have a garage sale, which is a lot of work!  I would have to do it on a Saturday when I am off work, but I might need help preparing for it.

Of course, I always worry about Todd being home all day alone. When I'm not there, he doesn't eat. It would be great if someone could tempt him by bringing food over and sitting with him for a short visit.  He really doesn't feel like going out to eat, as he barely feels like getting out of the house at all.

He will have a CBC drawn at Soin on Monday, September 19, 2016, as they don't want to wait a full week this time to see if he needs a transfusion.

Also, on September 21, we will be celebrating our 25th Wedding Anniversary.  I hate that he is so sick.  The celebration will likely be low key at home. I'm just thankful he won't be in the hospital and that we made it successfully to such a significant milestone!

Thank you all for the love and support.

FOR MORE INFORMATION:

AG881 General Trial Information: https://clinicaltrials.gov/ct2/show/NCT02481154

AG881 Trial at Memorial Sloan Kettering: https://www.mskcc.org/cancer-care/clinical-trials/15-252

Success of AG221 (showing average response time of 15.7 months):
http://annonc.oxfordjournals.org/content/27/4/599

Day 9 Hopitalized: An early morning fever causes delay in going home.

Day 9 Hospitalized:  October 22, 2015 @Cleveland Clinic

CBC:  Whites .39!!; Hemoglobin 8.8; Platelets 56,000; ANCs: Too low to count!!!
Liver Function:  Total Bilirubin: 5.6; Alkaline Phosphatase: 258; ALT: 50; AST: 39
Coagulation: PT Sec: 11.3; PT INR: 1.0; APTT: 35.6 (high)

Well, instead of getting to go home today as planned, Todd is still here.  He spiked a fever of 101 last night about 12:30 a.m.  They didn't need to give him anything for it, and really couldn't because his bilirubin yesterday was the highest ever.  It went down on its own throughout the night.

I knew this probably meant that they would NOT let him go home today and the Nurse Practitioner confirmed this news early this morning.  When the Attending Hematologist/Oncologist, Dr. Sekeres and his team came in before noon, he had already formulated a plan of action, one that I was happy with.  Unsure what caused the fever to spike: whether it was the Rhinovirus/Cold hanging on or the pneumonia, he decided to run a new CT scan of the lungs and the abdomen.  They want to get a fresh look at the pneumonia, and have their own radiologists look at it.  Up until now, they have only been able to review the CT images sent to them from the scan down last week at Miami Valley Hospital in Dayton.  They are just doing the abdominal scan as a precaution.  The Dr. said it never fails, that a day later, they wish they had done the abdominal, so he is trying to avoid that scenario.

Well, transportation within the Cleveland Clinic appears to be an issue too.  So far, we have been waiting an hour for someone to come up to get Todd to take him to radiology.  Ugh... Our nurse told us that there still is a shortage of help in medical staffing all around: doctors, nurses, and transportation staff.  He explained that is why the doctors are making more use of Nurse Practitioners and Physician Assistants.  Well two of our kids may be heading into the medical profession to help with this shortage.  Abby was planning on going into Psychiatry, and is taking pre-med coursework, but she really has developed a passion for alternative, holistic medicine.  She just found out about a study abroad trip to India with the pre-med program and a doctor going there to  treat patients with alternative medicine.  The trip will be during Winter break, but she needs to get signed up and paid for it now.  We are looking into it.  And, my youngest, Ellie, just joined the pre-med club at school, and is looking to start volunteering at Soin Medical Center.  My Hannah Lewis will cheer everyone up with her awesome art!  The Cade family has got this!

They finally took him down an hour or so later, and it only took about 15 minutes. I checked with his nurse about 7:00 p.m. and he said Todd's results were back, but wasn't sure if the doctor had a chance to review the radiologist's report yet.  From a quick look at the images and the report, nothing officially, it looked like the pneumonia was a bit more defined or not as hazy with "nodules" which if I recall my prior conversations with the infectious disease doctors and others, that can be an indicator of an fungal type of pneumonia.  So, I guess we won't know the official results until the nurse practitioner or the doctors make their rounds in the morning. 

So, as long as he can go through the night without a fever, and the pneumonia and Rhinovirus can be treated orally at home, we should be able to go home tomorrow either late morning or early afternoon.

Sue Mize, our current social worker at the Cleveland Clinic called after she noticed Todd had been admitted to offer a room at the Hope Lodge for tonight, as they had an opening.  I declined since Todd should be able to released tomorrow.  My neck has been stiff though from sleeping on that recliner bed and if I knew he was going to be here any longer, I would have been tempted to accept!  It was nice to know though, that if this happens again, that I could call her and she can try to make arrangements for me there in the future.  Nice option to have if he would ever be hospitalized for a longer period of time. 

Personal notes:
We may have someone coming to see the house this weekend from out-of-state.  I'm not finding work, and I'm just resigned that it is not the right timing, but I could continue to use prayers in this department.  I have applied for a fellowship at the Library of Congress starting next year, but it is a long-shot to say the very least and would require a temporary move of the family or me.  So, that's not ideal.  Right now, I will be happy to get through this semester and graduate, although after graduation, internships will likely become a closed door to me.

When we get home, I will need help with Todd, so that I can get back to my practicum at the University of Dayton.  I mainly just need someone to come sit with him during the day (9am-5pm).  I know his mom and my parents will be willing to help, but it would be nice, to have several people willing to rotate.  I would like to be the one to go with him to his appointments if I can. His research nurse Ashley came by today saying she had been trying to get a hold of his local oncologist all day to set up an appointment for Monday, October 26, 2015 of next week. (Where has this month gone?).  And, if he is feeling better, they would like to see him on Thursday of next week.

Thanks for your prayers and support.

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.

Transplant Date Scheduled

Before Todd's third round of chemotherapy we drove up to The Cleveland Clinic on July 9, 2014 to meet with his transplant doctor to discuss setting up the transplant. While the Vidaza had some positive results in lowering Todd's blast counts, we realized that this was no long term fix. We understand that some MDS patients receive monthly rounds of Vidaza for 12+ months or more, but many or most of these patients do not have a bone marrow donor match or their health is not stable enough to undergo a transplant.  We have accepted that this is not an acceptable treatment regimen for Todd.


Now that we are resigned to have the transplant, all the scheduling is set.  Staging, or the pre-screening testing that Todd needs to undergo with be done this Thursday and Friday, August 7 & 8, 2014.  During this visit, Todd will undergo a chest x-ray, lab work, bone marrow biopsy, an echocardiogram, an electrocardiogram, and a pulmonary function test.  In addition to testing we will meet with a transplant nurse, social worker, and an insurance specialist.  It is during this time that we can make housing arrangements for our extended stay once Todd is released from the hospital.  To get on the waiting list at The Hope Lodge, a nearby house for cancer patients, his social worker has to make the call. 

During this short overnight visit, we will be staying at a hotel about 20 minutes away from the hospital that gives bone marrow patients special lower rates (because The Cleveland Clinic helps to subsidize the rates) to gauge whether I will spend the nights there while he is hospitalized or not.  If I'm not comfortable being away from him, even for short periods, I may just stay in his room those 4-6 weeks.

 Todd's brother, his perfect match bone marrow donor, has also scheduled his Donor health screening for one afternoon at the Cleveland Clinic.  Todd's dental cleaning and assessment with our local dentist is also set.

I have included a scan of his calendar explaining how the days will be counted in terms of the transplant schedule.  On the day he is admitted, September 8, 2014, a count down begins (Day -9) until the date of the actual transplant, where he will have his brother's donor bone marrow injected, which will be considered Day 0 on September 16, 2014.  Those eight days: days -9 through -2 will be when he receives the intensive chemotherapy drugs that will kill all of his own bone marrow.  Day -1 will be a day of rest before the infusion on Day 0.  The transplant itself will only take about 20 minutes!  His brother will be there that morning to have his bone marrow harvested and then it will be brought up right away for infusion through his Hickman chest catheter.  This will likely occur in the late morning, since the donor is a family member (this makes the process happen faster than a non-related donor).  The days after the transplant will be counted in positive numbers: day +1, +2, etc.

Besides going up for staging this Thursday and Friday, Todd has an appointment on August 29, 2014 for lab work, an assessment, and a meeting with the pharmacist to go over the numerous medications we will be dealing with.  Another visit will take place September 4 and 5, 2014. The first day, Todd will have his Hickman chest catheter surgically inserted, and on the next day I will meet with the nurse to learn how to change the dressings, clean the catheter tubes, and care for the insertion site. 

Right now I am in the process of creating packing lists for me and Todd.  Since I'm not sure I will be able to come home during those 100 days, I'm debating whether to pack for the entire time or not (100 days).  We will be there beginning in the fall, but Cleveland can get colder in November and December.  I'm still figuring out how I will get important mail, whether to have it sent directly to the hospital or have my mom send it up to me in a batches from time to time.  I've got a list of special things I need to buy for Todd, like an electric shaver, since he won't be allowed to use a regular razor. 

In addition to creating lists for me and Todd, I am also preparing a list of things I will need to leave for my mom and a list of the girls' schedules and activities. 

I have had some ask about coming up to visit Todd or to bring the girls.  This would be nice.  I'm just not sure how much company he can have and when he can have it: pre-transplant, post-transplant, while in the hospital, or after he has been released.  This will have to be addressed when I have more information. 

Thank you for all the prayers and support.  We will really need them right now.  Things are a bit overwhelming with all the preparations that need to be made for our stay at Cleveland, the girls' needs here, and getting our oldest daughter moved into her college dorm later this month.  I will feel better once the girls get into their school routines before we leave. 

I'll post more updates after our visit this week. 

Long-term Treatment Planned: Bone Marrow Transplant September 2014

PAfter discussing the upcoming treatment for Todd with his Bone Marrow Transplant Doctor at the Cleveland Clinic on Wednesday, July 9, 2014, we are finally all in agreement to proceed with the Bone Marrow Transplant the first week of September 2014.

We have been anticipating this decision after his bone marrow biopsies revealed chromosomal abnormalities earlier this year.  While we feel confident about the decision, it is still overwhelming.

The doctor suggested doing the transplant next month and staging this month, which would mean only one  more round of Vidaza, however, we asked to wait until September 2014 for the benefit of our entire family.  Our eldest daughter leaves for college and moves into her dorm room on August 20, 2014.  We felt it was imperative that we be there to help her make this life-changing transition.  Our other two daughters begin school on August 26, 2014, which is equally important for us to be home for.  We would feel more comfortable getting the girls situated into their school routines before taking off to Cleveland for the required 100 days or so.

In light of pushing the transplant back one month, it is very likely that Todd will do a fourth round of Vidaza in August to keep his blast counts down. Round three is already scheduled for next Monday, July 14, 2014.

Staging, which consists of two days of meetings and a thorough medical exam and tests, will be done mid-August.  Todd's biological brother Tom, who is the perfect-match donor, will also undergo a thorough medical exam for one day in August too.  I would like to pause and say how thankful we are that first: God has provided Todd with a perfect match who is a family member, and second: how thankful we are to his brother Tom whom is willing to do this for Todd.

Todd's staging will include tests like:  blood tests for infectious diseases and organ functions, an EKG, an Echo cardiogram, chest x-rays, pulmonary function tests, and possibly a CT and a PET scan.  Another bone marrow biopsy will be done too, to evaluate blast counts pre-transplant.  And, if this wasn't enough, he also has to see his dentist to have him perform a cleaning, and dental evaluation clearing him of any abscesses, lesions, severe dental problems that will need fixing within the coming months, or any other infections in the mouth or gums.

Meetings will include a two-hour meeting with the Nurse Coordinator who will talk to us about the intensive chemotherapy and what to expect during the whole transplant process.  Then we will be spend about 1-2 hours meeting with a social worker, who will help deal with concerns like housing for me during his hospitalization and housing for both of us once he is released.  I will likely stay in his room or in a nearby hotel.  While he will only been in the hospital 4-6 weeks, we have to stay within one hour of the Cleveland Clinic for the remainder of the 100 days.  We are hoping to stay in the nearby Hope Lodge, courtesy of the American Cancer Society, but we have to get put on a waiting list via the social worker for this to happen though.  The social worker will also address any concerns we have with the emotional stress and discuss coping mechanisms we can use to get through the transplant.  We already returned a questionnaire that outlined our family and our needs in the upcoming months.

We were sent a three-ring binder of information to "study" before the transplant.  We are "required" to read the first three sections before the meetings for staging.  Some of this information includes the Central Venous Catheter that they place in his chest for administrating medication and taking blood samples.  Information on how to change the dressings, clean the tubes of the catheter and how to give him subcutaneous (under the skin) injections of medications was also provided for study.  Phone lists, Cleveland area maps and guides, hospital maps and guides, packing lists, medication information, follow-up care, a chapter on Graft vs. Host disease, and staying healthy guides were also included for reading.

I will elaborate as I learn more in future posts, but in a nutshell, Todd will be admitted and receive 8 days of intensive chemotherapy that will kill all  his bone marrow (along with healthy cells).  The following day, his brother will be put under general anesthesia where he will undergo the bone marrow harvesting from his hips.  Todd will receive that bone marrow the same day.  Then the fight begins for his body to accept the new bone marrow and "graft" into his system. From then on, Todd will have the same DNA as Tom.  There is a chance he could develop "Graft v. Host disease" where the cells in Todd's body try to kill the new bone marrow thinking that they are fighting off an invader.  There is no re-do if this develops into a severe case of Graft v. Host.  Then, he will also have to fight everyday infections that his immature immune system won't be ready to fight off, at least not for some time.  Four-six weeks of hospitalization will be followed by weekly appointments and trips to the ER if he develops even so slight of a temperature of 100.4 degrees.  If all goes well, he will be released to go home after the 100 days or so.  We are hoping this will be in December before Christmas.  Then the next six months to a year, he will still be developing a stronger immune system, taking medications, and fighting any other complications.  It will be unlikely that Todd will be able to return to work for 18 months to 2 years, but this is just a guideline.  Long term or even lifetime complications from the chemotherapy are always a possibility.  

Not only is the preparation for the transplant overwhelming, but preparing for the needs of daughters while we both are gone is also a major concern.

Questioning our decision was even an issue. The first few days after the appointment, we found it easy to second-guess our decision to go forward with the bone marrow transplant.  It is easy to read some one's blog who went through a transplant and had complications afterwards or to even look at any negative statistics.  The doctor said, our lives would be "different" after the transplant.  I asked in what ways, and she told us that Todd could have to remain on antibiotics and/or steroids for a long time afterwards.  Some people have to take them for life.  While this isn't a certainty for every patient it is a concern: How will his "quality of life" be post-transplant one year, five years, ten years, or twenty years out?  But, we must remember that God is in control and has provided everything we need NOW for the transplant and that without it our lives would be in constant limbo living for the next bone-marrow biopsy and blood test every three to six months. Or even worse, having the MDS develop into full-blown Acute Myeloid Leukemia which could kill him quickly or make any chance of treatment difficult or impossible.

Yes, it is going to be a long journey, but we are know it is the right one to traverse.  Yes, the thought of it and discussing it can be so raw emotionally that I can't help but cry, but I know it will for the best.

Your prayers and help are going to be called on for the next six months to a year! While our goal is be home before Christmas 2014, the recovery will not be over.  Things will still be precarious for the following six months or more.

I know my main request for help will be with our three daughters.  For those who live near us, it is you I will appeal to most! I'm sure my mom, who will be staying with the girls, would appreciate the help as much as it will ease my mind to have help with things like: rides  to volleyball practices and games, rides to Cleveland so the girls can visit safely, and homework tutors (likely in Algebra!), or for someone to encourage to Abby, living away from home for the first time.  

For Todd: notes and cards of encouragement, maybe care packages of homemade goodies when he gets to the point he can enjoy them.

I'm not real sure just yet of what we will need, but we will appreciate anyone who will just be with us in spirit.