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

AG221 Trial Comes To An End

T-shirts given to blood donors during the Battle of the Badges, Beavercreek, Ohio. Donors were entered into a drawing for a trip to Alaska-therefore the Moose theme on the T-shirt!

Since the last post, Todd had another blood transfusion and a platelet transfusion on Wednesday August 31, 2016. His platelets were at 28,000, not below the prescribed < 10,000 to get a platelet transfusion, but he got platelets to boost his counts prior to a much needed dentist appointment to fill a few cavities the following day, Thursday, September 1. His hemoglobin was back down to 7.5 just about 9 days after his last transfusion on August 22, 2016, when he was transfused with 2 units of blood.

Our local fire and police department was sponsoring an annual blood donation drive called the "Battle of the Badges" on August 29, 2016, where blood donors show up for the police department or fire department to see which group can donate the most blood. I decided to donate for the first time in my life!  I've wanted to donate or organize a drive ever since Todd was first diagnosed with MDS and also when he was transfusion dependent the Spring of 2015, but I never did. For this event, I scheduled a time to donate after I got off work. I learned so much about the process:

• you need to drink lots of water the day of donation; 
• it takes about an hour to register and go through the screening process;
• there is a list of medications, mostly blood thinners, that should not be taken so many hours prior to donating;
• I was worried that I would be disallowed to donate after checking "yes" to having traveled outside the U.S. in the past 3 years, but once I talked with the nurse during screening, she said they were really only concerned about travel outside in the past year in certain countries, especially extended stays. We had gone to the Dominican Republic in the spring of 2014, prior to Todd's chemo and transplant. (I had to look it up, it seemed like longer ago than that!). 
•  They also had to prick my finger and test my hemoglobin. Mine was at 12.5 the minimum needed to donate. (Low end of normal but I passed!)
• I did not eat before I went and I guess that is not desirable!  Especially for a first time donor. They wanted me to go eat the proffered chili, cookies, and orange juice before donating, but I was worried about getting  home to Todd and Ellie who also needed to eat. So, instead, she insisted I ate something before I left.  She actually gave me permission to "pig out" when I got home! See: First time donors
• since 2007, women who have had children are no longer allowed to donate just platelets unless they have been grandfathered in, meaning they have been already a regular platelet donor prior to this date.   See: http://givingblood.org/about-blood/blood-testing.aspx
• The actual donation only takes about 15 minutes.

Everything went great! The nurses said they had a great turnout and they made sure to tell each donor that their donation could save 3 lives! They can separate your pint of donated blood into platelets, red cells, and plasma.  I was so happy to see all the selfless people who were there to donate, knowing Todd was needing 1-2 units almost every week, that I was ready to cry tears of joy!  The nurses also thanked each person for their donation.  I personally wanted to thank each donor too!!!!  The whole experience was so touching to me knowing Todd is needing almost weekly transfusions, that now I want to organize a blood drive in his honor!  Todd would not receive the exact blood donated, but it would go to our community blood bank, where Soin Medical Center gets their supply.  Will those who are local begin to consider donating?  I pray you will!   Stay tuned.  In the meantime, check out this link: Red Cross Blood Donor Eligibility Criteria

"Although an estimated 38 percent of the U.S. population is eligible to donate blood at any given time, less than 10% of that eligible population actually do each year."

-The American National Red Cross. 2016

  
Cleveland Clinic Trial Appointment Cycle 19, Day 1

Today's appointment at the Cleveland Clinic for his regular trial appointment and treatment was rushed. Since Monday was Labor Day,  many of the patients that had appointments for that day were deferred to today. The day started out unsettling.  First, we were told that the person scheduled to do his bone marrow biopsy called in sick. So, they were afraid they were going to have to reschedule it for another day! I'm glad the sick staff member stayed home, but I was upset that Todd may not be able to get the biopsy today!  I told Sam, his trial nurse, that any other time it would not have been a big deal, but there was so much riding on the results of this biopsy , i.e.  pursuing another treatment options, that I really didn't want it put-off nor for us to have to return in the next few days. She understood and said she would see what she could do. We had to wait about an hour to get labs and another hour to get into a treatment room. Unlike his local office, they can type and screen him for transfusion during his lab appointment, so this saved us some time.  After running behind two hours from all the waiting, we had doctors, nurses, and the pulmonary technician, all trying to come into his treatment room during his transfusion. It was crazy. 

His CBC showed his hemoglobin at 8.3, platelets at 27,000, Whites at .86 and ANCs at .67 (hovering close to neutropenia .5).  There was some real concern about the low white count and ANCs knowing that these low counts make him more susceptible to infections. They decided to give him one unit of blood since he was below 8.5 and probably would not be able to make it until next Wednesday to get a transfusion, when he goes to the local oncologist.  They were also concerned that if he had not received platelets last week that he would have likely would have needed them today. 

Luckily, Sam was able to get his bone marrow biopsy scheduled for around 3:00 in the afternoon. He normally doesn't take the "pre-meds" before the procedure, since he has had so many biopsies and knows what to expect, but today he took them. 

Unfortunately though, the results of the genetic blood tests done last week had not come back for review. So, we will have to wait until next week for both the biopsy results and the genetic panel.

In the meantime, Dr. Hamilton was fully convinced that the trial drug AG221, he has been on for the last 18 months, was no longer providing any response. In addition, the increased nausea and fatigue were only suppressing his appetite and desire to eat. He is still losing weight and there is no reason to continue the drug if it's not helping and prevents him from getting the nutrition he needs.

Another consideration for stopping the drug now is that it would allow a "wash out" required period of time off the drug before beginning a new trial or another treatment.

"For all these reasons, Todd was taken off  of the trial drug AG221 as of today."

For all these reasons, Todd was taken off of the trial drug AG221 as of today.  His nurse Sam will start the paperwork to close out his trial. I will be sad to lose Sam as Todd's nurse, since she only works with trial patients. She has been so good to us! She will be able to help us temporarily, until Todd starts a new treatment, and she has assured me that we will be in experienced hands in the future.

Todd wasn't able to get his Echo cardiogram appointment in today though; and it has to be done at the trial facility, meaning Cleveland Clinic. So, Sam was able to get an extension to have it done when we come back to discuss his test results and the start of a new treatment. 

So, after 18 months of visits for the trial, what will we do now?  How often will he need to go to the Cleveland Clinic? What are the treatment options?  As for visits to Dr Hamilton at CC, they will be scheduled as needed. No more mandatory 2 week blood draws, no more monthly EKGs, no more Echocardiograms and biopsies every two months. We were asked if Todd would be willing to allow these tests to continue for follow-up research purposes for trial study, but we haven't made a decision yet to commit to these since we live so far away and would be bound to do them. We will also lose the reimbursements for our expenses and hereafter will have to pay for any drugs needed that are on the market (like Revlimid) unless they can be obtained through another trial. In my last post, I mentioned the high cost of the drug Revlimid. Sam requested a quote from the drug company Celgene outlining the portion our current insurance would cover and/or what kind of assistance we could receive from them, but she hasn't heard back from them yet. I'm not sure it will matter, as Todd will be forced to apply for Medicare next month by Obamacare. Who knows what will be covered on Medicare and if we will have to purchase some kind of Medicare supplemental insurance to pay for what it won't cover. 

Other treatment options include going back on the monthly chemo drug Vidaza or maybe even a combination of Vidaza and Revlimid. Vidaza targets blast cells and Revlimid works by increasing red blood counts by working against the 5q cytogenetic chromosomal deletion that causes the anemia, and therefore the need for transfusions. 

 I feel like I need to start researching more trial options. Dr. Hamilton is still planning on talking to Dr. Stein and getting his insight after the genetic panel and biopsy results come back.  If Todd has both the IDH-1 and IDH-2 genetic mutations, he would be eligible for the trial drug AG881, which would be another option, albeit, a complicated one as we would have to travel to one of the 5 trial locations in the U.S. none of which are within a driving distance of less than 6 hours.

Todd will need to return to his local oncologist one week from today, September 24, 2016 to check blood counts.  Hopefully, we will have test results back and be able to make a consult appointment with Dr. Hamilton at the Cleveland Clinic too.

We appreciate your prayers and support.  I know Todd would deeply appreciate your phone calls. He lays around a lot because he is so tired and we rarely go out.  He really needs the encouragement.  He said that becoming transfusion dependent again brings back bad memories of when he was so sick after his failed transplant.  It is a vicious cycle of feeling his energy drain away more and more every day, until he can no longer put off another transfusion.  A special dish or treat might tempt him to eat for those who prefer to cook or bake.  A card, email, or text would also help boost his morale.  If you prefer to visit, please contact us first.  We ask that all visitors make sure they are in good health and haven't been exposed to sickness especially since his immune system is so low.  And, because he sometimes sleeps or take naps throughout the day, it might be best to call first before coming over, so you don't catch him sleeping.  I think it would be especially nice to receive visitors while I am gone at work during the day; that is when he is often alone now that the kids are all back in school.  It is also the time of the day he goes without eating.

God Bless!

MORE TRANSFUSIONS MAY BE NEEDED AS COUNTS REMAIN LOW

My last post left off with Todd going into the local oncologist/lab to get his routine labs done for his trial drug AG221 Day 15, Cycle 17 on July 27, 2016. We were anxious to see if the transfusion he received the following Thursday had helped to boost his blood counts.

Unfortunately, they did not. The results showed his Hemoglobin at 8.3, whites 

at 1.4, ANCs at 1.1, and platelets at 46,000.  This means he is once again close to needing another transfusion (hemoglobin < 8.0). This is also the lowest his immune system (reflected by the white and ANC counts) has been since he was in the hospital last October 2015. What does all of this mean for everyday living?  Taking extra precautions with activities like shaving with a razor (low platelets), living with severe fatigue, watching for a fever, and being cautious with what he eats (washing fruits and vegetables well, avoiding raw or under-cooked fish or meats, etc).  But worst of all, being severely anemic means  transfusions. The transfusions themselves aren't necessarily bad for him, even though they can result in a build up of iron, but they are inconvenient and often a multi-day process. First, getting labs to see if he needs a transfusion, then getting typed and screened, then setting up the transfusion at the hospital, and then the almost day-long process of getting the 2 units of blood. The depressing cycle  of fatigue and knowing your counts are dropping and hoping the transfusion will provide the much needed energy can be draining. 

I talked to Todd's bone marrow transplant Doctor this morning to get an idea of the game plan and where we go from here. She informed me that they ran a complete viral panel with his blood work and everything came back negative. If he had something bacterial he would have a fever. And the last bone marrow biopsy showed no increase in blast cells. 

This was her opinion:  Schedule appointment with Pulmonary Specialist to look at lungs, since he is still struggling with the cough. Next, deal with the anemia with transfusions until we know what's going on. I agreed with her that it may take some time to see if his complications and anemia is the result of "the disease evolving." While the AG221 is helping to keep blast counts low, it may not be keeping the disease from causing the anemia and low blood counts. My daughter Abby had brought up a good suggestion, which I put to her: "Would it help/be an option to increase the dose of his AG221?"  It was something she hadn't considered, but said it could be an option, but, if he is already suffering from the side effects of nausea, diarrhea, and high liver enzymes, that increasing the dose would likely make all of these side effects worse.  Not to mention, she would have to approach the drug company and ask it was even an option.

She had just received his cyto-genetics report back from the most recent bone marrow biopsy, and while there was no real major changes or new chromosomal abnormalities, she had noticed an increase in the number of 5q abnormalities, which could be a reason for the lower counts.  She said that about 15/20 chromosomes observed had 5q deletions. She said she may consider the idea of switching Todd's medication from AG221 to a medication used to treat MDS patients with the 5q deletion called Revlimid.  Since the transplant failure, we knew he had this option in our back pocket if we needed it.  It might be time to pull it out and use it.  Unfortunately, it is very unlikely that he could continue on the AG221 and just in the Revlimid, because it would be against the conditions of the trial study.  But, if Todd would become transfusion dependent, and the AG221 was deemed no  longer effective, then this is another good option for him.  We all have been so bullish on AG221 because it has worked so well for him, so we aren't going to let it go until we know for sure that it is not helping him.  I've even considered calling Dr. Eytan Stein at Memorial Sloan-Kettering in New York again if we can't get some answers, to see what he thinks.  Whatever it takes; that is what we will do!

I'm trying to make him rest and take it easy.  It has been so blistering hot in Dayton the past week, that being outside is more  difficult for him. I'm  getting good with the Zero-Turn Lawnmower!  We are planning on taking it easy this weekend, plus, Hannah Lewis is getting wisdom teeth taken out on Saturday!  So, I'll be nurse Kimberley to the invalids this weekend! (just joking). 

Todd will go get his blood counts checked at the beginning of next week, if he thinks he needs a transfusion.  I have to say I was impressed with his nurses at Soin Medical Center.  They sent him a personally signed card wishing him to get better!

The next trial appointment at the Cleveland Clinic will be August 10, 2016.  They have a full day of tests already scheduled.  Maybe we will find out something more by then.  We wanted to try to take a family vacation before the kids go back to college and school, but its not looking good since we just don't know how he is going to feel and if will continue to need transfusions.

Thanks for your support.

MORE INFORMATION:
About revlimid: https://www.drugs.com/revlimid.html

COUNTS DROP FOR UNKNOWN REASONS; TRANFUSION NEEDED JULY 21, 2016

I hate that I tend to blog only when there is a major change in Todd’s condition, but when he is feeling well, we are busy trying to enjoy life!  Unfortunately, it has been since May since I have provided and update, and once again the news warrants the update.

Todd’s condition on the trial drug AG-221 (Agios/Celgene) has been stable.  He hit end of the one year anniversary being on the medication on March 23, 2016.  He had a bit of allergy symptoms in early spring April/May 2016, with a runny nose, sneezing, cough, etc.  We attributed this to the fact that the grass was being mowed often and the spring was wet. 

He felt well enough to visit his brother Ted in St. Petersburg in mid-June, but he was still suffering from allergy symptoms.  He saw his Bone Marrow Transplant Doctor at Cleveland Clinic every month on Day 1 of his drug cycle, and continued to get blood work drawn locally on his Day 15.  The doctor gave him the “thumbs-up” on his June 13 visit to fly to Florida and back for the short visit. He came back still feeling symptomatic, mostly still suffering from a lingering cough. 

He was feeling somewhat tired, but was able to get around most of the day just fine, but with a nap (it isn’t unusual for him to need a nap). We had missed a family reunion in Tennessee in June and wanted to go down to visit the weekend of July 4.  I haven't had a vacation in over two years! He had blood work drawn before we went on Day 15 of Cycle 16, which was June 29, 2016.  Since it was drawn at a local lab, he didn’t get the results until we were driving down to Tennessee on July 1.  All of his counts had dropped.  This was the first time in many months that there had been a significant, noticeable drop in counts.  His Hemoglobin was down to 9.0, white counts to 3.2, ANCs at 2.5, and platelets at 65,000.  Just to give you some perspective, his Hemoglobin had been running in the 10s and 11s, Whites and ANCs in the 4s, and platelets as high as 75,000. 

This was a shock to us; this meant he was only 1 point  away (<8.0) from needing a blood transfusion!  He hasn’t needed a transfusion since he was sick with the pneumonia and cold last October 2015.  Even though his counts had starting dropping slightly before this, we were not concerned, because we all understand that there is often some slight variation from visit to visit and from one lab (Cleveland Clinic) to another (Local Compunet). So, we attributed the slight differences in the differences in labs.

We tried to make the most of our trip to Tennessee, however, we quickly noticed that Todd was getting tired very easy.  When we returned, he didn’t seem well rested and still had that nagging cough.  So I ended up emailing his trial nurse at Cleveland (so did he!) the next morning to let her know.  Todd’s trial appointment was already set for the upcoming Wednesday, July 13, 2016 for Day 1 of Cycle 17.  So, they set-up at Chest CT in addition to his bi-monthly bone marrow biopsy, Pentamidine breathing treatment, EKG, and Echo cardiogram.  

The doctor had asked extensively about his cough and some tightness he was having in his foot/ankle before she gave us the news about the low blood counts.  We both felt something was wrong, and knowing her well, felt she didn’t want to give us the bad news. Then she let the bomb drop; the blood work for that day was back and his hemoglobin had dropped even more:  Hemoglobin down to 8.1, Whites #, ANCs #, and Platelets.   Basically, the initial view of the CT scan looked fine, and she didn’t have any idea why the counts were dropping.  We discussed having Todd tested for CMV or Cytomeglavirus which can affect post-transplant and immune-compromised patients, but she was hesitant to this.  I knew why.  She wanted to wait to see what the results of his bone marrow biopsy were.  If the blast counts, were up, we would have our answer.  This scared us; the trial drug has been working so well!  She said that it was possible that he was sick with a virus, and that the only time his counts had dropped like this (on the trial drug) was last October when he had the cold and pneumonia.  So, the possibility that he was sick, was a good one.  We left a little deflated. 

They don’t transfuse Todd until his hemoglobin drops below 8 and it was already late when we got done with all his appointments.  There was no treatment appointment made to give him a transfusion while he was there.  We would have to follow-up with his local oncologist. We didn’t end up getting home from Cleveland that night until after 11:00 p.m.

So, the next day, Thursday, he was still very tired.  His trial nurse called in blood work orders to his local oncologist and he went in on Friday, July 15, 2016.  We also asked if they would go ahead and have the blood drawn for the CMV test.

Before I go on, I have to tell you about our ObamaCare health insurance nightmare.  We received a letter from our Healthcare provider, In Health Mutual, an Ohio PPO created after the Affordable Care Act was passed in June saying that they were going bankrupt and that if we didn’t want to lose our tax credit/subsidy we had to select a new health care provider by July 1, 2016!  So, Todd had to go back onto the Government Healthcare Marketplace website and try to find insurance that the Cleveland Clinic and his doctor accepted. He found one: An Anthem BC/BS Silver PPO program, which he selected.  We paid for the new premium for the Anthem and had the information for the new insurance before Todd’s appointment at Cleveland Clinic on July 13, 2016, only to find out that IN Health Mutual withdrew almost $1,000 from our checking for the July premium-even though we switched healthcare companies!  We spent hours trying to get it corrected and to get our money back.  The input operator at the Marketplace also accidentally cancelled our Dental Insurance, so, we had to cancel Todd and Abby’s dentist appointments for that week and try to get our Dental re-instated!

Here’s the kicker, we realized when Todd went into see the local oncologist’s PA to have more blood work on July 15, that they didn’t accept our new insurance!  Basically, we would have to pay that bill out-of-network!  This is already in addition starting over on our yearly deductibles half-way through the year, when we had already met our deductibles on the prior In Health Insurance!  

Now, back to Todd.  The blood work came out about the same, Hemoglobin was still at 8.1 and the platelets had gone up slightly, but the PA decided that Todd could wait to have a transfusion and sent him home.  I called the trial nurse that day and asked if the preliminary bone marrow results were back; that it would ease our minds to know the results.  She sent him the results and Thank God, the blasts were still only at 1%!  This was great news!  The cancer had not been ratcheting up, but something unknown then was causing the drop in counts. 

By Tuesday, July 19, 2016, Todd was still very tired and his cough still persisted.  The trial nurse sent orders to the lab, but no one there was certified to take blood from his port, only from his arm and by this time, his arm was getting bruised.  I knew we needed to have his blood drawn again, and something needed to be done about getting him a new hematologist/oncologist locally.  So, I started calling.  First, to the new insurance company, Anthem.  They gave me 2 or 3 names, but only two were actually hematologists.  I also asked about what hospitals in the area were covered because he had always gone to Miami Valley Hospital in Dayton for all of his transfusions.  I found out that Miami Valley was no longer on our list!  Only the Kettering Medical Network of hospitals.  I was upset at first, not sure if any other hospital had their own blood bank nearby.  I also asked Anthem if Cleveland Clinic and Dr. Hamilton was covered and she said no!  I wanted to throw-up in my trash can I was so upset! So, I called the Government Healthcare Marketplace back and they said both were listed as providers! 

I called Dr. Amanda Laubenthal of Cancer Specialist of Greater Dayton.  They were very nice and I began to relax. They had an office in Beavercreek near Soin Medical Center, just minutes from our house.  The doctor was willing to see him right away, but they needed his medical records (at least his recent reports).  So, I called his trial nurse and Cleveland and she was able to send them electronically before we got off the phone!  She also told me that the CMV test had come back negative.  So, one more thing we could rule out!  Dr. Laubenthal’s office contacted Todd and he had an appointment to see the doctor and get blood work for Wednesday afternoon, July 20, 2016.  I was so relieved!  I didn’t get to go with him to the appointment that day because I had to work, but he liked the doctor and the blood work showed that his hemoglobin had dropped to 7.5, whites to 2.2, ANCs to 1.7, and platelets to 66,000.

At first he told me over the phone that he wasn’t going to get a transfusion even though his hemoglobin was under 8.0.  He was just going to “monitor himself” and get blood work next Wednesday!  I was livid!  I tried to convince him that he would likely feel worse and that come the weekend, he wouldn’t be able to get a transfusion and would have to wait until the following Monday to get in.  I didn’t understand why he was so opposed to getting transfused.  He told me he was going to go to SAMS Club to pick up some things we needed.  In about half an hour later, he texted me and said he was going to go back to the Dr. Office/hospital to get “type and screened” for a transfusion.  They had just closed the office, but lucky for him they let him come in and by 5:00 p.m. they had set up an appointment for a transfusion of 2 units of blood at Soin Medical Center for the next morning, July 21, 2016. I’m not entirely sure what made him change his mind so quickly, but if I had to guess, I would say that once he got to SAMS Club and had to walk so much, he realized how exhausted he was and that he had better go get the transfusion!  I knew he was stubborn, but… Anyway, I was just grateful that he changed his mind.

I had to work the next day, but I took a long lunch to go check on him during the transfusion.  I told Todd to make sure the blood they gave him for the transfusion was “Irradiated and Leucocyte-reduced, and CMV negative.”  He asked, and they assured him the first unit they were giving him was.  When I got there, they were just finishing the first unit of blood and getting ready for the second unit.  While they were getting it ready, I asked if it was Irradiated, Leukocyte-reduced, and CMV Negative, but they couldn’t find it labeled anywhere on this unit that it was CMV Negative.  So, I asked them to wait and ask someone.  This is a bit technical, but basically, people who have caught CMV (the virus that can cause Herpes) produce antibodies to fight against it.  Once you have been exposed to CMV, it can stay in your system forever, even if it stays dormant.  So, if the antibodies are present in the blood, then they know the donor has been exposed to the CMV.  We had just confirmed that Todd didn’t have CMV, nor did we want him to get it, so I wanted to be careful.  Most of the time, if the blood is irradiated it kills most germs or viruses.  In addition, if it is leukocyte-reduced, it means that they have tried to take out most of the white blood cells, where viruses like CMV reside.  This is likely good enough, but I knew that since they were able to screen for it now, and since the first unit was CMV negative, why shouldn’t the second unit of blood be?

So, they halted the transfusion and waited from word from the blood bank and the local oncologist.  Meanwhile, I called Dr. Hamilton, his Bone marrow transplant Doctor in Cleveland and his trial nurse to ask.  I got patched through to Dr. Hamilton and she said it would likely be ok, however, Dr. Laubenthal said No, just order new unit of blood that was marked CMV negative.  So, luckily Soin had more blood on stand-by and Todd only had to wait another 30 minutes for them to get the second unit of blood and start the transfusion back up.

I was glad though that I had a chance to talk to Dr. Hamilton, who said she was at a loss for what was causing the drop in counts since the bone marrow blast counts were low and the CMV test came back negative.  They were trying to come up with other possibilities and decided that he should be tested for RSV.  So, they contacted Dr. Laubenthal's office and had the nurses collect a sample (through the nose) while he was there.  The transfusion was long as usual, but helpful.  

I know medicine is a process of elimination, but it can be frustrating not knowing what is causing the drop in counts, even though all the tests for various viruses having been coming back negative, which is good.  The alternative of it not being an illness or virus of some sort, is too upsetting to contemplate at this point.  

He is scheduled to have blood work done for his Day 15, Cycle 17 done on Wednesday, July 27, 2016.  So, we are going to see how much this transfusion helped, get the results back from the RSV swab, and go from there.

We appreciate your prayers and support as always.


WANT MORE INFORMATION:
Cytomeglaviru (CMV)s: http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514

RSV:
https://www.cdc.gov/rsv/
http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514

Todd Hospitalized: Days 5-6

Day 5 Hospitalized: Sunday, October 18, 2015
Counts: Whites: 2.0; Hemoglobin:7.8 ; Platelets: 59,000 ANCS: 1.9;
Liver: Total Bilirubin:  7.4; Alkaline Phosphastase: 218; AST: 74;ALT: 102; Indirect Bilirubin: 4.4

Fever still persists. Had a better day yesterday, because they decided to stay on top of his fever with round-the-clock Tylenol every four hours. It just takes so long to work!  I didn't come into the hospital until the afternoon, since Ellie had a lacrosse tournament that I wanted to take her to.  My sister and boyfriend went out instead that morning and my parents in the afternoon.  They were concerned, because the nurse tried to give him the large potassium tablets to swallow, which immediately made him gag and throw-up.  My dad was upset, and suggested the nurse dissolve the tablet in water first and have him swallow it instead.  This worked much better.

It became obvious that he wouldn't be out of the hospital anytime soon. This is what his doctor in Cleveland feared: a long stay and she can't consult on his care.  Todd became frustrated and nervous about his care at this point and told me he had already initiated a transfer request to the Cleveland Clinic that morning.  At first, they told him they were going to move him at 1:00 p.m.  He wanted me to call the insurance company to make sure they would cover the cost of the transfer, but I had no luck getting a hold of anyone on a Sunday.  The nurse said, that the social worker probably got it approved already or else they wouldn't have arranged it.  Obviously, we were concerned, knowing that it was something we couldn't afford out-of-pocket.

So, I knew I needed to get home and get packed, but then they rescheduled to 9:00 p.m. that night.  But by mid-afternoon that transport got cancelled too!  Apparently, no ambulance carrier service was available.  Todd said it was because everyone wanted to stay home and watch football!  I said, I should start my own ambulance transport company! So, they rescheduled his transfer to11 am on Monday morning.  We weren't very happy with this, and once again I tried to go on the Anthem BC/BS website (which is horrible!  No search button!)  to find out if we had benefits.  If he didn't have benefits, we considered having him discharged from the hospital so I could drive him up myself.  Cleveland Clinic had a bed for him, and after that day's transfer fell through, they agreed to hold the bed for him until the next day.

When I made in it, I was shocked to see how yellow he looked!  It was obvious that his bilirubin was high!  He also had bags under his eyes, near his cheekbones. The round-the-clock Tylenol they gave him the day before helped the fever, but not his liver!

We learned that all prior blood cultures and a MRSA swab that turned in before came back negative, which was really no surprise.  I didn't understand, and had been advocating for them to take an influenza swab since I first took him to the ER.  The doctors there wasn't concerned, feeling that if he had the flu, it was too late to treat, but I wanted to know if he had it or not!

Hannah Lewis came out with me to the hospital, being home from college for a few days.   His fevver was still up and down, and he didn't feel very good, but it was a football day, so that helped some!

Also, big news of the day, was that he was advised NOT TO TAKE HIS TRIAL DRUG AG-221, because his bilirubin was borderline of staying in the highest tolerable level of 7.5.  It was the first time in the 7 months he has been on the drug that he had to miss a dose.

I didn't leave the hospital until about 11:30 p.m.  And even though I tried to get to bed right away, I couldn't help but start packing, and talking with the kids.  It was extremely late when I got to bed.

Day 6 Hospitalized: Monday, October 19, 2015
Counts: Whites: 1.32; Hemoglobin: 6.8 ; Platelets: 42,000  ANCS: ?;   
Liver: Total Bilirubin:  7.3; Alkaline Phosphastase: 189; AST: 37; ALT: 66; Indirect Bilirubin:?

Monday started early, making a call to Todd's nurse, taking Ellie to school, confirming the arrangements to have the hot water heater installed, and calling the insurance company right at 8:00 a.m. when they opened to verify coverage.  The representative said that they would cover the transfer under certain circumstances like when they were moving him to an upgraded/better facility, but they usually like per-certification.  Todd's nurse called me around 8:30 a.m. and told me that the ambulance was on the way and that they were transporting him at 9:00 a.m. now.

I called the trial nurse to find out if he should take his AG-221 at 9:00 a.m. before Todd left Miami Valley.  Once, I told them his bilirubin number of 7.3, we agreed that he should likely hold off again.  Technically, he has until 3:00 p.m. every day to get his dose in.  So, I told him not to take it and check again with the staff when he got to his room at the Cleveland Clinic.

 I was dragging, but got a second wind when Abby brought me breakfast, and it was time to send Hannah Lewis back to Columbus with folded, clean laundry! Lol!  Abby helped me packed, reflecting on how she helped me pack for Cleveland last year for Todd's transplant.  After a shower, and my preferred caffeine from McDonalds, I was ready to hit the road.

We both made it up to the Cleveland Clinic with no problems:Todd by ambulance around 1:30 pm since they picked him up early at 9:00 am and I arrived about around 4:00 pm.  I was glad they were able to secure him a room on the Leukemia Floor, Room. G111-12. I immediately noticed his cheeks were rosy with fever as soon as I walked into the room and insisted that they take his temperature again. It was over 101 degrees F. All the standard tests were started: new blood cultures, CBC, and urinalysis were all drawn. I thought I would dread being back here, but I was glad they had a room for him.  It was an upsetting first day as he looked and felt so poorly still.

Todd did not end up taking his trial drug AG221 for the second time in 7 months. The did give him more potassium again today, but the nurse dissolved it in a little bit of his Canada Dry Ginger Ale, then had him drink it.  This worked well.  By the evening though, they thought it was just easier to give it to him by IV drip.

High temperatures continued to be an issue. They didn't give him a blood transfusion when he needed it, because they were concerned that they would not be able to tell if he was having a reaction to the blood (which is usually depicted by a new fever). So, they kept him ice packed, and gave him 1 tablet of Tylenol. He was feeling so poorly, I practically begged them to give him the transfusion, but the doctor wanted to continue to wait while his fever was lower (around 100) with the ice and the 1 Tylenol. He continues to have headaches with the low blood counts.  

They finally swabbed him to test for influenza.  Unfortunately, until the test comes back negative, everyone will have to take special precautions coming into the room, needing to put on plastic gowns, gloves, and face masks (except me of course!).  Not only did they want to know if the flu was a factor in Todd's illness, but it is important not to spread it to other compromised patients on the floor.  No one doing it at Miami Valley Hospital from the beginning was a huge mistake and oversight on their part.

They are NOT in favor of doing ANY KIND of BRONCHOSCOPY!  Since they can't do the biopsy because his platelets are so low, it will do no good to do the scope and try to get some liquid out, like they were going to do at Miami Valley.  It is not helpful, and does not warrant the risks of the procedure. 
 

10:00 p.m.
With his fever, and low hemoglobin, his respiration and difficulty breathing began to increase. When the STNA came in at 10:15 p.m to take his vitals, they noticed that his oxygen level had dropped from 98 to 85-88 (they don't want it lower than 92). The nurse called the doctor and they put him on oxygen. His fever dropped to 99, so they finally agreed that he needed the hemoglobin and gave him one unit of blood.

 
He slept a lot, as he was so weak. I helped him brush his teeth in bed with a spit tray.  He was seeing things, which we found out later, that the Voriconazole can cause hallucinations and visions.  He went to bed fairly early, but got up about 1:30 am to go to the bathroom.  We were able to sleep pretty well through the vitals and blood draw about 4:30 a.m. until they came back in again about 8:00 a.m. Tuesday morning.

Personal notes:
I'm sure I'm missing some things and some of the times and what happened on which day may be jumbled.  It has been nearly impossible to go back and recall the events of the last six days!  The days, treatments, fevers, and medications, have been an endless stream.  I wish I hadn't gotten so behind in blogging, but I have spent an enormous amount of time on the phone coordinating his care and checking on things between two hospitals, multiple sets of doctors, and staff.  I've been trying to communicate with the kids, parents, friends, and family, all who are concerned about Todd.  I have been trying to post short updates on his Facebook Webpage every day too.  If you are interested in getting faster updates than the blog, please go onto Facebook and search Praying for Todd Cade.  If you "like" the page, it will show up on your newsfeed.

Todd is concerned about all the extra expenses that have come up, especially the high cost of the water heater and installation.  We are hoping that the ambulance ride was covered too.  I told him not to worry, that I would start a GoFundMe page if worse came to worse, or ask for donations to the Todd Cade Care Fund at PNC Bank.  I know its hard on him being laid up in bed and worried about caring for everything.

The House has been listed with the realtor and we may have someone coming to look at it this weekend.  We are doing what we can.

I haven't got to blog about us losing our health insurance in January 2016, but basically, we were denied the 11 month extension of COBRA benefits for qualified members on disability.  We didn't know it wasn't automatic and no one told us that we were supposed to notify Todd's employer or his insurer (still don't understand which) within 60 days of being notified of his Social Security Disability Eligibility Date, which would have been last year, right after he got out of the hospital from the transplant.  Everyone involved from his employer to the COBRA administrator swears that their hands are tied and that they have no control over the extension.  Didn't get a clear answer who denied the claim, but I guess it doesn't matter.  All the begging or pleading has not helped us.  Even the Department of Labor was no help.  It looks like we will be one of those families forced onto Obama Care/Affordable Care Act, that is really not affordable!  I can't imagine paying any kind of percentage of expenses.  I pray we can avoid bankruptcy if we have to pay 10%, 20% or more of Todd's health care costs.

At this stage, we can only take one day at a time! I only write about this COBRA thing to warn anyone else who is on COBRA benefits and who may also need the 11 month extension.  If you are awarded Social Security Disability, please be sure to notify your previous employer, the insurance provider, and anyone else you can think to notify within 60 days after your award date!    I wish someone would have told us.  If we could have been awarded the extension, it would have taken Todd to the eligibility date for Medicare at the 2 year mark from the SSD award date.  I wish we had someone had told us!

We appreciate your concern and support and covet your prayers.

Todd Hospitalized (Day 1-4): Our Confidence is Shattered

Todd has been doing so well on the trial drug AG221 that we have been able to almost go back to life as usual. Oh, how our world was rocked when he became sick and was running a 101.1 fever on Wednesday, October 14, 2015.

On Tuesday night he said he felt like he chest was tight or something was wrong.  He went to bed and ran a few errands on Wednesday morning, but my early afternoon he was run down and had to lay down in the bed. He took a Sudafed with Tylenol thinking he was getting sick and went to sleep. By 5:30 pm he was still feeling poorly and wanted to continue to rest, so I let him sleep. I went in to check on him about 7:30 and felt his forehead to see if he was warm. After insisting on taking his temperature, I was shocked to see it had registered a temperature of 101.1!  

I hesitated not knowing what to do at first. This was unbelievable! This couldn't be happening!  He had been doing so well. It was a bad nightmare, one that we have had before. The fear of infection; the rush to the ER. 

I didn't stay shell-shocked for long. The prescribed protocol I knew so well came to mind. First, I called the Oncologist/Hematologist Fellow on call at the Cleveland Clinic. I knew we would likely need to get to the ER, but this was a new situation. He is a trial drug patient. After paging the fellow, I texted his research nurse in a desperate attempt to get her advice. The Cleveland Clinic Fellow called back saying get him to the ER here in Dayton without delay. 

By the time I paged the local oncologist  to arrange the ER visit, Todd's nurse had texted me back saying the same: get him to the ER.  I told Todd to get ready and I began to pack anything he might need, because it was likely they would admit him. I was shaking by now, and he didn't argue with me. He slipped on a jacket and shoes and we were ready to go. I called my mom to come stay with Ellie and the local oncologist said it would be best to go to the main campus of Miami Valley since they would likely have to transfer him there if we went to Miami Valley South.

Day 1, Wednesday, October 14, 2015
Counts: Whites: 3.3; Hemoglobin: ; Platelets: 55,000  ANCS; Total Bilirubin:  
Upon arrival, they got his vitals and got him back to a room right away.  I figured they would want to start him on IV antibiotics, but I didn't know what he could have since he was on the trial drug. There is a list of drugs that cannot be taken during the trial study.  I'm so grateful that I have such a great relationship with his research nurse at the Cleveland Clinic!  She let me know which antibiotics were permitted.  They took blood for cultures and a CBC, then started him on IV fluids and Zosyn antibiotics. By this time, his fever was up to 103 degrees F.    They took him down to get a chest x-ray and urine sample.  They added a second IV antibiotic, Vancomycin.  Then, we waited.

At first, the doctor in the ER came in and told us that the chest x-rays looked fine, but they were going to admit him, but within the half-hour, the hematologist/oncologist on-call at Miami Valley came in and said, that upon second look, they spotted a "hazy" area in the bottom left lobe of his lungs and were going to do a CAT scan to confirm a suspicion that he had pneumonia, which it did.  He was having some pain in this area in his back, so this made sense.

Day 2:
Counts: Whites:4.1; Hemoglobin:8.7 ; Platelets: 55,000  ANCS; Total Bilirubin:4.9; Indirect Bilirubin: 4.3; AST 1.21
They had him up in a room right after midnight on Thursday, October 15, 2015.  At this point, we thought he might be in the hospital for two or three days, like before, when he had fevers.  Little would we realize the uphill road Todd would be climbing.

The local oncologist, his associates, and an infectious disease doctor all were coming in to see Todd.  The infectious disease doctor was concerned about Todd's total bilirubin numbers and his fever.  We complained that he was still waiting on Tylenol to help with his fever, and that there was no order from any doctor to give him any, which caused the nurse to drag her feet in getting him some.  She was so upset, she went and got him Tylenol herself and made sure he got it! I also needed to get the list of drugs that he is NOT allowed to have on the trial study faxed to the nurse's station, and then have her scan it into Todd's record so all the doctors and nurses had access to it. 

Todd's research nurse had called me that morning and asked us to consider transferring him to the Cleveland Clinic at the request of his BMT doctor.  She could keep a better eye on him there, especially if his stay is going to be more than just a couple of days, which she cautioned it could turn into a longer term stay. 

At 2:30 p.m. the nurse came in and took away his food and water, telling him he couldn't have anything to eat or drink because the infectious disease doctor had ordered a scan with contrast die of his liver, just to make sure there were no unseen problems.  We had a good idea that it was just from the trial drug, as it has that side-effect. They told us he would have to start drinking the contrast dye beginning at 4:00 p.m. and to call the nurse when he had drank half of it, over the next two hours, so they could prepare to take him down to radiology.  We rang her around 5:30 pm and she called down saying that he had to wait to go down until 7:00 p.m. because there were some "emergency" priority scans that needed to be done before him.  Of course, 7:00 pm is shift change.  So, 7:00 came and went and I couldn't get a nurse down to his room.  When I finally did, I was angry, because he was hungry and feverish and couldn't drink anything cold or eat.  She said she would find out what was wrong, and then addressed his fever, which was spiking too.  Apparently, there was no one from "Centran" to  come get him and wheel him down in to radiology!  This was totally unacceptable!  I could have wheeled him down myself, if I knew that was the hold-up!  By 8:30 p.m. I was fuming and his nurse on duty told CT/Radiology that she was going to wheel him down.  I went with them, because I was determined to talk to someone.

After the radiologist finished with him, I told her I wanted to why it took so long to get him down here, even with the "emergency" patients, it couldn't have taken hours to get him down here.   I said each scan should only take about10-15 minutes, so that doesn't explain why it took so long.  I told her we had no delay in getting his CAT scan done in the ER.  She admitted that ER has their own CAT scan machine, which made the delay even more unacceptable!  Why didn't they take these "emergency cases" to the ER then?

She immediately blamed "Centran."  I asked who was this?   A separate contractor? She explained that they are hired [by Premier Health]to deliver patients to radiology. I told her that the wait and reason for the delay was totally unacceptable.  I wanted to file a complaint with them and she said they would send someone up to speak to me.  Two men came up, one who was an "acting supervisor" but the supervisor himself was not available.  I told him how unacceptable this was, what poor customer service, how he was sick and needed to eat and drink, and was denied this until after the scan.  In addition, I asked him when we would get the results back?  Would there be someone to read the report tonight?  No.  Of course not, well there were radiologists, but now his would be last in the que to be read! The order from the infectious disease doctor was ordered in the morning and that the test wasn't done until 8:30 p.m.  He agreed with our sentiments and said he would report it up the management chain.

So, he finally got to eat something!  It was a long frustrating day with the nursing staff and the STNA, which we saw maybe twice in a 12 hour shift.  I had enough.

 Day 3:  Friday, October 16, 2015
Counts: Whites: 2.1; Hemoglobin: 7.7; Platelets: 48,000 ANCS 1.9;
Liver: Total Bilirubin: 4.3; Alkaline Phosphatase 177; AST: 56; ALT: 116; Indirect Bilirubin 3.4

On Friday morning, I had to stay home in the morning and get the Radon-X people set-up for them to install the radon mitigation system we had scheduled for that day.  They came around 10:00 a.m. and when we went to the basement, he had noticed that there was little pools of water in the storage room, which upon further inspection it seemed to wet in a circle around the hot water heater!  This was all we needed; to have to replace the hot water heater!  So, I tried to get a hold of plumber, but no one could make it out that day.  So, I called Josh Allen, from Allen Home Inspection, a friend of ours, and he said he would come by and have a look at it.  I would find out from him later in the day, that there was some rust in the bottom of the tank, and it was likely leaking from there.  So, he was worked behind the scenes to get a plumber to come install a new hot water heater for us the following Monday.  Another huge expense and stress we had not planned for!

While at home, I called his BMT doctor in Cleveland and she urged me to transfer him to Cleveland Clinic.  She can't see his results or advise a course of treatment because she doesn't practice there. She has been treating him for over a year, seeing him currently every two weeks. After the previous day, I wanted to move him.  We were also told that it is harder to transfer patients on the weekend.  I went out to the hospital and tried to convince Todd to transfer, but he wasn't ready to do that.  Our family is here, our support is here.  Todd wanted me to be able to go home and stay with Ellie. I understood that and decided that we could re-evaluate the situation the next day, and each day after that.

I also called Sam, his other trial nurse, and she was going to put a call into the drug company about how high he bilirubin numbers could go, and Todd still be allowed to take his AG221 Trial Drug.  I had looked it up, where Ashley had said it could 5x the normal level, but Sam wanted to confirm this at the stage he was at in the trial.  She ended up calling me back and said that 5x was correct using an average rate of normal of 1.5.  So technically, his bilirubin could go as high as 7.5 and he could still receive his trial drug dose.

Friday started out just as frustrating at the hospital.  I called his nurse early in the morning and asked if they had his CBC results, she said no, so I asked her to call me with the results when she got them.  I never heard from her, so when I got into the hospital, about 12:30 in the afternoon, I found out that they didn't even do his lab work until 10:30 a.m. and that they still didn't have any results back.  I know that it only takes a maximum of 20 minutes to get a preliminary CBC back.  Todd was upset because there was no order in the system by any doctor to have a standing CBC ordered for early in the morning.  Which is usually standard procedure: they take the CBC early in the morning 4:30-6:30 a.m. so the results will be back when the doctors makes their rounds around 9-10 a.m.

By mid-day, I made up my mind, either they would move him to the transplant unit there or I was requesting a transfer to Cleveland Clinic.  The nurse was avoiding me, because they had told her that I was asking for her and for the blood results.  So, I had them page the oncologist on call from Todd's local oncologist's office.  I told her how upset I was and that I felt he just wasn't getting the care he needed there.  I gave her my ultimatum, move him or we were leaving.  Luckily, there was a bed open in the transplant unit and they agreed to move him there.  So, by 3:30 p.m. they wheeled Todd down to his new room on the transplant floor.  His first nurse there, Ashley, was great.  He had a fever, and instead of just giving him Tylenol and ignoring him, she packed him in ice around his arms and between his legs to get his temperature down without trying to use the Tylenol, which would be harder on his liver.  Even though his liver enzymes were down, they feared giving him too many meds would increase his bilirubin.  I appreciated this new approach.

We finally got the liver scan results: it showed some enlargement but no blockage. Bilirubin went down which was good, but so did all of his blood counts which is bad.  His numbers this morning showed that he was getting close to needing a transfusion. He started having bad headaches, probably from the low blood counts.

Todd battled high fevers all day.  The infectious disease doctor came in two or three times, concerned about what was causing the fevers.  He wanted to do an indirect blood test to try to identify any kind of mold infection, but he found out that the labs at Miami Valley Hospital are so limited that they only run that test in the lab on Mondays and Thursdays!  So, since it was Friday, they had no choice but to delay.

Todd's brother Patrick came by to visit after work.  Todd felt well enough to talk shop for while his fever was down to about 101.  However, shortly after he left, we realized that Todd's fever was back up to  103 and would not relent.  His wonderful nurse Angel worked so diligently to get it down using a combination of medications, since it had been taking about an hour for the Tylenol to have any effect. They took additional blood cultures when his fever spiked, because nothing had come back from the ones taken on the night he came into the ER. They also took another CBC blood count, and his hemoglobin had dropped to 7.2.  We knew he needed a blood transfusion at this point, but I knew it would take several hours to get a type and screen and then get the blood ordered.  The infectious disease doctor came back in and decided to go ahead and start anti-fungal medication, called Voriconazole, by IV, in attempt to treat the pneumonia, as a fungal type of bacteria, just in case, in light of the continued high fevers.  He also recommended that a pulmonary specialist be consulted about doing a lung biopsy.

They were finally able to get his fever to come down, but it was so late and I was hesitant to leave that night, but I needed to pick up Ellie from a friend's house and I needed sleep.  I left around 12:30 a.m.

Day 4:  Saturday, October 17, 2015
Counts: Whites: 1.7 ; Hemoglobin: 7.6; Platelets: 37,000 ANCS 1.5; Total Bilirubin:  4.2; Alkaline Phosphatase 182; AST 41; ALT 93; Indirect Bilirubin: 3.3

I got out to the hospital early.  They were just starting the first unit of blood by then!  Apparently, it took much longer than usual to get the blood products ordered and delivered, as they needed his blood type with CMV negative antibodies, something we hadn't remembered before, but it had been a long time since he had a transfusion.  I was a bit frustrated that it took all night to get the blood.  They didn't finish transfusing the 2nd unit of blood until about 11:30 a.m. Todd says he feels better and he was able to sleep.

 My mom and dad brought Ellie out and Todd's mom stayed home to rest.  She had been out Thursday and Friday.  We sat waiting for pulmonary specialist to come in to consult on lung biopsy. His platelets were down to around 35,000 making it less than ideal for the procedure.

The pulmonary specialist came in and decided to do the Bronchoscopy, but not to take a biopsy.  Felt it was too risky with Todd's platelets being so low, however, he did want to get a liquid sample and  scheduled it for Monday. 

Our friends Lynda and Chris came by to visit and it helped to raise both of our spirits. 

Todd admitted to Hospital with Pneumonia

To all of you who follow this blog, I just wanted to post a quick note that Todd had to go to the ER last Wednesday, October 14, 2015 with a temperature of 101.1.  They admitted him to Miami Valley Hospital in Dayton, that same evening with a diagnosis of pneumonia; an unusual type of pneumonia.  He has struggled for the last several days with high temperatures, up to 103 degrees F., fatigue, low blood counts, and high bilirubin counts.  His total bilirubin has been so high, that they had recommended that he stop taking his AG221 for the past two days, to allow the counts to diminish.  All the other medications they have him on including the Tylenol has been working his liver very hard.  After 4 days and limited testing and treatment in Dayton, we had Todd transfer to the Cleveland Clinic where his bone marrow transplant doctor and trial nurse can better oversee his care and where he can get the advanced care that he needs. At this point, the antibiotics have not been effective in treating his pneumonia, he has had to have one blood transfusion this weekend, and will receive another one today.

We are hoping that the doctors and staff here will be able to determine what type of bacterial infection he has, if there is something else wrong, and get together a game plan to treat him.  I'll do my best to update with details as we go along.  Thanks.

Day +87: Chemo scheduled in Dayton

We learned today that Todd will be able to do his outpatient chemotherapy with the local oncologist in Dayton starting Monday, December 15, 2014 for five days. This is great news. The only downside is that if his blood counts are low, he will have to go to a local hospital for transfusions. But, this is still better than spending the whole week in Cleveland. 

At today's treatment, Todd ended up needing a blood transfusion as his hemoglobin had dropped to 8.1. He has been very tired, so I hope this will help with his energy level. 

The other counts were down also. Whites were at 1.28 or 1,280. Low white counts can make him more Susceptible to infections. His platelets were high enough not need a transfusion, but they too continue to drop: 22,000. 

We are so grateful that we can be home next week. Driving up and back to Cleveland two times per week is getting tiresome. We have to get up at 5:00 am to get to his appointment on time. But still, this is better than staying in Cleveland all week. 

We have thought about what went wrong with the transplant: Why it didn't wor.k. Todd thinks they didn't give him enough chemotherapy to wipe out his bone marrow, but I think the problem lies in the use and application of the immunosuppressants. They chose to suppress his brother's donor marrow so he wouldn't get a bad case of Graft versus Host Disease, but I wonder why they didn't suppress Todd's bone marrow and let his donor marrow grow and engraft unsuppressed. I guess this was the professional decision of the doctor who is the specialist in this area. 

Whatever contributed to the failure of the transplant (we may never know), our eldest daughter in her wisdom told us: Don't regret the decision to do the transplant. It was the only curative treatment and we had to try it. The odds were in our favor. I have taken comfort in this truth. We can't change the past or second guess the decision to transplant. We can only move forward taking life day by day and make the best decisions based on where we are that day. 

Thanks for your support and prayers. We still believe God can perform a miracle in Todd. 

Day +27: Blood transfusion needed

I Today, October 13, 2014, Todd had to go to his treatment appointment right after his doctor's visit. (It's usually the other way around). 

Today, his orthostatic blood pressure and pulse were fine; no IV fluids were needed, but he did need a blood transfusion because his Hemogloblin at 8.5, below the 9.0 outpatient threshold level.

The rest of his counts were steady but still below normal. Whites: 2,610; ANCs (neutrophils) 2,050; and his platlets are at 19,000. 

It took about half of the day to get through this appointment. Blood work, and blood typing and matching alone took hours. This is an important step, because the blood he receives for transfusion has to be screened so that it doesn't interfere with any of Todd's antibodies. 

He received two units of blood and someone from pulmonary came down and gave him his breathing treatment of Panti.

Before we left for the day, the bone marrow transplant scheduling department had scheduled his X-Ray  immediately following his transfusions today and the MRI for October 21, 2014.