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 (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. 

Out with Old (Hickman) and in with the New (Port)

Todd before his surgery procedures.

I apologize for not blogging sooner!  I am back in graduate school, which along with everything else, has left me very little spare time.

Todd went into surgery on Thursday, July 2, 2015, to have his Hickman Central Catheter removed and his new chest port put in.  There were  no problems with either, however, Todd was considerably sorer than anticipated.

On his appointment day, he had his blood drawn, for the trial study and to see if he needed platelets during the surgical procedures. His counts were stable.  His hemoglobin was 9.9, Whites at 1.96, ANCs at 1.45 and his platelets were at 67,000-which meant no platelet transfusion was needed.  He didn't see his doctor that day, so besides the surgery, it was a short day.

Saying Goodbye to the Hickman!

He experienced considerable pain around the insertion point of the port catheter and around the catheter itself for the first 4 or 5 days after the procedure.  He has had some severe bruising.  He likened the pain to being hit with a hammer to the neck and chest. He wasn't allowed to drive for 24 hours or lift anything heavy, and was even advised not to make any major decisions, apparently because the type of anesthesia they used could impair his memory temporarily.  They were able to administer the anesthesia through the Hickman catheter, before they pulled it out. 

The type of port they put in was a new variety that the hospital was using for a limited time.  It is called a Power Port.  It doesn't need flushed with Heparin every six weeks, but instead every 3 months, if it is not in use.  He is healing up and feels little pain, although there is still some lingering bruising.  He can now shower, go to the pool, and even shot a shot gun!  The radiologist asked him if he was right handed and would he ever like to shoot a shotgun in the future!  If so, he was going to put the port in the left side of the chest, which was the plan anyway.

A few days after the surgery.  Hickman removed on left.  Insertion of new port on the right.

In regards to the trial study in general, we found out that another person was enrolled in the study, making the total 3 now at the Cleveland Clinic, however, the second patient had just left the study because of the nausea he was experiencing.  Although Todd is still suffering from the nausea and elevated bilirubin, he feels it is tolerable knowing that he really doesn't have another choice of treatment.  He has lost another 5 pounds, making his total weight lost since September, 2014 nearing 40 pounds.  I am still very concerned about this, but it is impossible to control some one's eating.  We are encouraging him to drink his Ensure shakes whenever he can, and try to find tempting foods for him to eat, that don't upset his stomach.  He has the option of eating first, then waiting two hours to take his AG-221, and then waiting another hour after.  They wanted him to take his medication at 9:00 a.m. each morning, so this would mean getting up and eating before 7:00 a.m., which just isn't realistic for how he feels (he likes to get extra sleep in the morning).  The drug study does allow for a 6 hour window to take the medication, so he does have the option of eating first, as late as 1:00 p.m. and taking the drug by 3:00 p.m.  So, he is experimenting with this option when he feels like it. At least we know that the nausea isn't limited to just him, but that other patients are struggling with the same side effect. 

His bilirubin seems higher on some days than others, if the yellowness in his eyes are any indicator.  On Thursday, his eyes were so yellow, that all three kids, at different times said something to him about noticing it.  So, I spoke to his research nurse so they could make a note of it.  At his last visit his bilirubin count was at 3.4.

We leave for Cleveland again on Wednesday night, to be there early Thursday morning for another 10-hour of blood draws for Day 1 of Cycle 4.   No bone marrow biopsy will be done, until the beginning of Cycle 5.  It is hard to believe he has been on the drug for 3 full months now!  It has been so great that he hasn't had to have a transfusion since then!  We are grateful for that, but even so, going to Cleveland Clinic every two weeks has been tiring.  We were supposed to be able to go only once a month after Cycle 4, but apparently that isn't the case.  They still need labs drawn, and our research nurse asked if he could do it in Dayton, but he has to have done at the research facility, Cleveland Clinic in his case.  There is a new amendment of the study coming out, which would give the patient a 3-day window to have testing done, so that would allow us more flexibility in going to Cleveland.  She thinks he can be added to this amendment, which would be a bit more helpful, if I have to work on a set testing day.

I asked if there was another amendment of the study, that provided a lower dose, or allowed Todd to take the drug with food, but there isn't.  Instead, the latest patients signing up for the drug have to go on a 650 mg. dosage of the drug!  Todd only takes 200 mg. per day!  I can't imagine how many more side effects this patients will have to deal with!  Our nurse said that we picked the best time to get on the study, when the dosing was still lower.  Thank you Lord!

Personal News:
For me, things have been busy even in the summer.  I'm starting my sixth week of classes this week.  Just two more to go!  However, I also start my two week plus workshop this week too!  So, I will have some overlap in assignments, readings, and projects.  I'm having a hard time now staying up with weekly assignments, so I'm afraid I'm going to have to find more time.

My practicum is officially set up for Fall Semester, beginning August 31 at the University Archives at The University of Dayton.  I have to complete 150 hours within the fall semester which ends in December.

I did get hired at CVS as a part-time pharmacy technician, but haven't started working yet.  I had have an FBI background check and drug testing completed first, before I can begin training.  I'm going to try to get my practicum hours done on Mondays and Tuesdays, and be available for work the other days, although my supervising Archivist as UD is very flexible about what days I complete my work.

We still haven't sold our house, which has been on the market now for just 7 weeks now.  However, property taxes are due and our funds continue to deplete.  I just can't get to working fast enough.  I've thought about postponing finishing school, but Todd feels I need to finish in order to get the best paying job once I have my Masters.  God is still providing, with help from our church and friends and family.  We continue to market the house and lower the price, knowing that we really need to sell by the end of the summer.  I am thinking about setting up a "Go Fund Me" account, because we haven't had much response to the PNC account.  Neither Todd nor I really have felt comfortable setting up this kind of account or asking anyone for money.  We would rather trust God, as he lays it upon the hearts of people.

I have been working hard to get Abby and Hannah Lewis ready for college.  Abby is going to transfer from the University of Cincinnati to Wright State University and Hannah Lewis leaves for Columbus on August 20.  We have worked on financial aid and loan paperwork this past week.  We still need to do some shopping for the dorm room and are in need of a new MacPro computer for school.  Both will need books, etc.  Ellie is still preparing for Volleyball tryouts, which will be August 1.  She also has been working on her Honors English pre-class reading assignments, due the first day of school!

If anyone has some experience with the mechanics of a riding lawn mower, we could use some help getting the snow throwing attachment off of our zero-turn lawn mower, and help installing the mowing deck.  If we can mow our own grass, it would also help us save some money.

I'm really feeling helpless on many issues, and I'm trying to remind myself to trust God's timing.  Thank you all for your love and support.  I will try to get another blog posted soon after this week's appointments. 

Day +101: Platelet transfusion needed

Todd went into his local oncologist's office to have lab work done to check his blood counts.  He went in at 11:00 a.m. but didn't get home until after 4:30 p.m.!  His counts were down today: Hemoglobin was 8.9; whites 1.9 (1,900) and platelets at 9,000.  These were the preliminary results and they wanted to verify them, which took a bit longer, but the count was accurate. Since his platelets were under 10,000, he needed a transfusion of platelets.  Sounds straightforward...right?

Well, unfortunately, his local oncologist's office/cancer treatment center does not have a blood bank, so he was going to have to go to a local hospital to get them.  Since it was the day after Christmas, the cancer center was short-handed with only one doctor and a handful of nurses available.  He waited and waited for a doctor to sign an order for the transfusion and to get an appointment at a hospital that had platelets.  By 1:00 p.m. he was still waiting and hadn't had anything to eat, so he finally had to leave to get something to eat and returned with no appointment or orders ready.  After waiting until about 4:00 p.m., the doctor had finally signed the order, but there were no open appointments for a transfusion today, so they scheduled it for 7:00 a.m. tomorrow morning at Miami Valley Hospital. 

While I expected his numbers to drop some after the Vidaza chemotherapy, I wasn't expecting so much difficulty in arranging the transfusion.  So, I called his nurse coordinator, but she too was on vacation.  Instead, I got to talk to another nurse who was filling in for her.  I was concerned that since his next treatment appointment to draw blood work and get blood products wouldn't be until next Wednesday, December 31, 2014, (5 days) that he was going to need a transfusion before then (especially with his hemoglobin hoovering right above the threshold of 8.5, and because of the fatigue he has been experiencing the last two days).  She said that she could secure us an appointment in the Taussig Cancer Center at the Cleveland Clinic on Monday, December 29, but we would have to be there at 8:15 a.m.  Todd, although he was tired of the long wait today, he still wasn't ready to go back to Cleveland Monday.  We would have to go up the night before or leave that morning around 4:30 a.m. to get there! It was her opinion that if he got platelets today, (well, tomorrow now) he would likely be able to wait until Wednesday, but he would very likely need transfusions then.  In the worse case scenario, we would have to be prepared to take him to the emergency room if he becomes symptomatic of falling counts: such as extreme fatigue (where he really doesn't feel like getting out of bed), shortness of breath, and/or confusion.  These signs would indicate a severe need for a regular blood transfusion.  Of course, if he would start bleeding anywhere, he would have to go to the emergency room for a platelet transfusion. 

I hate the idea of taking him to an emergency room which takes so long, and with people who can be contagious and put Todd at risk of catching something.  At least at the Cancer Center at the Cleveland Clinic, everyone else there is in the same fragile situation as Todd and the patients and family members are educated about germ control and how important it is. 

With the stomach/intestinal virus and the influenza circulating, we are trying to be extra careful to protect Todd from catching these.  Please do not visit if you or any member of your household has been sick.  We still have to be very vigilant in protecting him from catching something that may seem minor to us, but detrimental for him.  Although he is excited to see a few new movies that have been released, I have talked him out of going at this busy time of the year with so many sicknesses circulating.  

Todd was quick to point out that his white count had actually gone up slightly from 1.54 on Monday, December 22 to 1.9 today.  This is likely from a positive response to the Vidaza chemotherapy.  Usually, the counts drop and then get a bounce up for a few weeks.  His ANCs (Absolute Neutrophils) of 1.4 were almost within the normal range of 1.5-7.8.  I love that he is so positive and looks for things to be grateful for!

This is a good opportunity to shameless plug blood donation and platelet donation.  Many may recall our experience with the platelet shortage right after his transplant.  This shortage still exists.  If you are healthy and able to donate, please contact your local blood donation center or the Red Cross.  Your donation can save lives and bring strength and help to Todd and others like him who rely on transfusions.  Please note: you CANNOT donate specifically for Todd only; this is too complicated, but it does help keep the blood products in supply. 

I  hoping to post some Christmas photos and a few other tidbits later this week.  Thanks for your support!  Please keep praying: that he would develop a mild case of Graft versus Host Disease to fight off his diseased bone marrow; that he would feel well and keep his energy level up; that the transfusion scheduled for tomorrow goes well and that he won't need to go to the emergency room for more transfusions until his next appointment; that our family would have peace and harmony; that if the timing is right, that God would open or close doors for a job opportunity for me.  I have an appointment to take a skills test for one job opening in January and I've put in an application at a local university who needs a library information specialist that I'm actually qualified for.  I still haven't made a decision whether to return to school or not either. 

My mantra today:  God can do the impossible!!!

Day +55: Half way through and a Weekend trip home.

At Todd's Day +55 treatment and doctor's appointment, on Monday, November 11, 2014, everything was on schedule and there were no problems.  His counts overall were good and on the rise, but there was a slight drop in his Platelets.  Two out of four of his CBC counts are now in the normal range.  Here are the results:

White Counts:     4.43 or 4,430. Normal range is 3.70-11.0
Hemoglobin:       11.5                 Normal range is 13.0-17.0
Platelets:              47,000             Normal range is 150,000-400,000
Absolute Neut (ANCs) 3.44 or 3,440  Normal range is 1.45-7.50

We were a little concerned in the drop in his Platelets (went from 58,000 to 47,000), but after talking with his BMT nurse coordinator, she said that they typically see a slight drop in the Platelets from day 50-60 (Not sure why). 

That day, we ran into another former patient that Todd was in the hospital with.  He said he experienced the same drop in his numbers and even had to have a transfusion of blood due to lower hemoglobin at the 50-60 day point.  When asking him about his chimerism or percentage of donor vs. self bone marrow left, he said he had gradual drops in his own bone marrow and that he was now at 100% of his donor's bone marrow cells and 0% of his own.  He had his transplant about a week before Todd.

We also had breakfast with another former patient and friend we meet in the hospital.  She was at a similar chimerism as Todd, but her CBC counts were a bit stronger.  They started reducing her other immunosupporessant, Tacrolimus, just that week.

When Todd saw his BMT doctor later that morning, she said that they would probably begin reducing his Tacrolimus next week.  They also drew blood work for another chimerism report, but it will likely take 1-2 weeks to get the results as usual. 

The best news has been that Todd has not seen an obvious signs of Graft v. Host Disease since he was taken off his first immonosuppressant, Cellcept, last week.  Todd's magnesium results were also steady after reducing his magnesium supplements from 6 to 4 tablets per day. 

I still take his vitals twice per day, and there has been no sign of fever or high/low blood pressure.  Todd is doing so well!  We have no complaints!  Well...except to go home.

Speaking of home, we had the doctor's permission to go home for a weekend visit the first time in two months!  We arrived in Cleveland on Sunday, September 7 and got to go home for our first visit on November 7, 2014!  It was so wonderful.  I was able to cook using my gas range and oven!  We were able to stretch out in our king size bed and sleep with our favorite pillows.  The greatest thing was getting to see our daughters and parents.  And of course, my dog!  I'm sorry to say I didn't take one photo the whole weekend!  We were living in the moment, every moment of everyday!  We didn't get to go to church, because that is frowned on by the doctor (too many people, shaking hands, hugging, etc.), but we hope to go soon. 

55 days down, 45 more to go!

Day +48: Numbers Increase and Medication decreases

At today's doctor's appointment, Monday, November 3, 2014, Todd's doctor did not have his latest chimerism study results back yet.  It could be as late as Friday before they come back.  So, we won't know the results until next's week's Monday appointment.

The good news is, that even though these results aren't back, his doctor is ready to remove one of his immunosuppressant drugs named Mycophenolate Mofetil (Cellcept) from his medication regime beginning this Friday.  Under normal conditions, this medication is stopped between days +50 and +60.  So, this Friday, will be Day +52.  The removal of this medication will allow for more engraftment of the new bone marrow, but it can also allow Graft versus Host (GvH) Disease to surface.  A little of GvH is good because it allows for the Graft versus Cancer/Leukemia Effect to take out any remaining original bone marrow.  However, a lot of GvH can be dangerous and/or problematic bringing about a host of secondary problems which I have discussed earlier.

We feel good that the results of the chimerism study will show higher percentages of Todd's newly donated and engrafted bone marrow from his brother, because his CBC blood counts continue to increase at a steady pace as shown in his last three results:
                              Hemoglobin       White        ANC        Platelets
October 27                 10.9                3,110        2,190        50,000
October 31                 11.3                3,840        2,740        57,000
November 3               11.6                4,610         u/k           58,000

His potassium and magnesium results have also been high enough not to need infusions.  As a matter of fact, he is allowed to cut back to only 4 slow-release magnesium tablets per day instead of 6.

While any symptoms of GvH would take a week or more to show up, his doctor thinks he may be ready to go home for a weekend visit very soon.  I'm ready!

I'm getting so tired of hotel living.  The noises, thin walls, weird smells coming from neighboring rooms, and the train that decides to blow its whistle when it comes through about 2 am!  Not to mention that I am terribly missing my family and my dog Charlie!  I miss my bed, my pillow, my kitchen with an oven that works properly, and all my kitchen tools that make cooking so much easier!  My poor mom is ready for some relief too!  (God, please  help her to hang in there!).

We praise God for Todd's good health.  We ask that you remember us in your prayers.  This week specifically: That Todd's body will respond positively to the withdrawal of the medication.  That God will give us all patience and forbearance to endure our living situations a few more weeks.  That God will give us direction in our finances, job opportunities, and affordable health care in the months to come.  Thanks.

Day +24. First Outpatient Treatment post BMT

Todd's first outpatient treatment appointment was at the Taussig Cancer Center this morning, October 10, 2014 at 8:15am. We didn't know what to expect at this appointment except they were going to do lab work to check his blood counts, magnesium level, potassium level, and Tacrolimus level. Tacrolimus is a immunosuppressant they have Todd on to help him from developing a serious case of Graft versus Host Disease. 

Our nurse introduced us to the treatment center and the treatment procedure when he comes in for a visit. First they took his vitals. No fever! This is always a praise. 

Then, they had to take his blood pressure sitting and then standing. If his blood pressure drops more than 20 points or if his pulse drops from sitting to standing they consider him dehydrated and they have to give him IV fluids. This was the case today. His blood pressure was 110/65 sitting but dropped to 90/50 when he stood up. 

She told him that the new requirement for liquid consumption is now 2- 2liters of water per day. This does not include any decaf coffee or tea either. He can count Gatorade and some juice in that total. 

They drew bloodwork and we were so happy to hear the results about 30 minutes later. Outpatient requirements or thresholds for counts are a bit more tough. Hemogloblin has to be over 9.0 instead of 8.0 to avoid a blood transfusion. Todd was at 9.5 today!  

His white count was 2,610; ANCs were at 1,680; and platelets were at 15,000. (So happy his marrow seems to be making enough!). 

It took about 2 hours to get his IV of fluids. By then his magnesium and potassium levels were back; both levels were within the acceptable ranges. Potassium was at 4.4   Infusions are given if levels are at 3.3 or less (normal is 3.5-5.0 mmol/L).  His magnesium was at 1.6. Infusion is given only if it is 1.3 or less. (Normal range 1.7-2.6 mg/dL). 

Todd's next appointment will be Monday. He will go through treatment screening again and receive anything he needs. He will also be getting a breathing treatment of Pentamidine to help prevent infections. The last one he had was done shortly after admission. He has to have this treatment as an extra precaution along with Amoxicillin since he can't take Bactrum (a suspected drug allergy).  He will also have his weekly appointment with his bone marrow transplant doctor. 

He has three appointments scheduled each week through the end of November. He will go down to two appointments per week in December.