Bilirubin numbers too high; No AG221 right now

Todd didn't get to go to his routine trial drug appointment last Wednesday, February 10, 2016. He was up the night before with abdominal pain. He thought it was indigestion or something he ate. It finally passed after several hours but we didn't get much sleep. 

On Friday, he asked if his eyes and skin looked more yellow or jaundiced than normal and I said yes!  I had been asking him to contact his doctor at Cleveland Clinic to check in and get his biopsy results. He decided not to take his trial drug AG221 that day, because we know that it elevates his bilirubin at least 2-3x higher than normal, even though this increase is within the acceptable limits of the drug trial protocol which allows his bilirubin levels to go up to a maximum of 5x the normal level. 

Normal bilirubin about 1.5

Maximum bilirubin allowed on the trial 7.5. But even then they don't like it that high, because it can cause liver injury. 

Todds level on the drug usually stays around 2.5-3.5. 

I decided that it we should call the doctor. Not only I had noticed that he looked more yellow, but had asked him if his urine looked like it was darker than normal. Almost brownish red. He said he didn't think so, but after putting the stomach ache, dark urine, and greater yellowing/jaundice, I thought we wedded to ask. 

I called his doctor, but she was out of town at an ASH conference, but his nurse said she would run it by his trial nurse Sam and the doctor taking over for his doctor. Sam called me back quickly, and it was decided that they need some blood work. She worked with the doctor and faxed in orders to our local lab and have it processed STAT. 

Within 3 hours he had the blood work drawn, the results back, and we got a call back from Sam. All of our concerns were justified. His Total Bilirubin was 7.7 and his direct bilirubin was 4.4. His Alk phos was off the chart at 400!  (Normal  45-115).

So, Todd was told to go off his trial drug immediately. They scheduled an appointment for him at Cleveland Clinic on Tuesday where they will do some extensive blood work and see the doctor. 

Sam also looked up Todd's last bone marrow biopsy results, which sowed another 1% increase in blast cells, bringing them up to 4%. I still don't think this alarming, but I don't like that in the last 4-5 months his blasts have gone up slightly each time. 

 

Please pray that they will find out why his bilirubin went up so much and can recommend appropriate action. I think it is just the accumulation of the trial drug over time causing the escalation. Especially since he already suffered some liver injury when he was in the hospital last October where he suffered similar elevated numbers due to the addition of numerous medications to get his fever down and treat the pneumonia. The highest his bilirubin was then was 8.7 which was crazy high. Even then though his alk phos numbers were about 219. 

I'll post an update of what we learn after Tuesday's appointment. Thanks for your love, prayers, and support. 

Post-Discharge Concerns with Liver Function

Todd was discharged from Cleveland Clinic on Monday, October 26,2015, after a full 12 days in the hospital.  It too was a long day.  They started with the doctors making their rounds.  His counts looked good, and he was not febrile, so they decided to start him on the new oral anti-fungal drug, Posaconazole that morning.  His total bilirubin looked a bit high, but under the 7.5 allowance per the trial study guidelines, so they also allowed him to take his chemo trial drug AG-221, along with the oral Cipro antibiotic to replace the IV medication Zosyn.

His blood counts were Whites: .95; Hemogloblin 10.8; Platelets 41,000; and ANCs .66
Liver counts: Total Bilirubin 5,8; Alkaline Phosphatase: 353; ALT: 129; and AST: 84; PT INR 1.1  These numbers weren't great, but tolerable at this point. The doctors were hoping that the Posaconazole would allow these numbers to go a bit lower, but by this day, there were trending up.

It took forever to be discharged of course.  His nurse had to deaccess his port, and said she needed to use heparin, but I told her that his new Power Port, did not need heparin.  So, apparently, she had to take an extraordinary amount of time to look it up, because I had to go get her an hour later, and she said that I was right, his port didn't need flushed with heparin.

The other delay, was waiting for his perscriptions from the pharmacy.  The nurse had arranged for bedside delivery and someone did come by early in the afternoon telling us that the co-pay for the Posaconazole was going to be $70 and was that ok.  We said yes, we didn't have a choice.  She went off and didn't hear from anyone the rest of the day. After our nurse tried to call there, I decided I was going to pick them up myself so we could get out of there.  I went to the main pharmacy and they didn't have the prescription there, it was at the Crile Pharmacy across the skyway.  So, I had to walk over there.  Luckily, a very nice lady in transportation was there with the golf cart and she offered to drive me over (yes, it is a long walk).  When I got there, I realized that the prescription was only for 10 days, not 30 days!  So, $70 for only a 10 day supply.  The pharmacy had the scripts there and had no intention of getting them over to us, as far as I could tell.

When I got back, the nurse was ready to go over his discharge instructions and ordered a wheelchair to take him to the entrance for me to pick him up.  By this time it was about 4:30 p.m.  Needless to say, we hit Cleveland rush hour traffic and didn't make it home until about 8:30 p.m.

On Tuesday, October 27, Todd had a follow-up appointment with his local oncologist, at his request, so that we could "reconnect" even though all Todd really needed was blood work.  It was a waste of time, the local oncologist still can't remember the name of the trial drug Todd is on, and asked us why were we there!  Ugh...

Blood counts on Tuesday were mixed: Whites .7; Hemoglobin 11.3 (Never been this high since before transplant.  Lack of fluids can make his blood concentration higher though).  Platelets: 89,000.
We didn't get his CMP (Complete Metabolic panel) and had to request the results, but they said they wouldn't be able to get them and call us back until the following day, Wednesday.  Ugh...

We went home and took a long nap, as we both were wiped out and happy to be sleeping in our bed.

Wednesday and Thursday, October 28 and 29, 2015, Todd was tired.  I mean sleepy and not getting out of bed tired.  I didn't understand this.  His hemoglobin was so high!  Then why was he so tired?  I just chalked it up to fatigue.  I was dragging, and I'm not sick!

I didn't hear from the local oncologist's office with the liver results, so I had to call and ask for the results via a voicemail.  When I got home from doing my practicum at UD that afternoon, they had Still, something seemed "off."  I texted his trial nurse with the results later:
Direct bilirubin was 6.4; Alkaline Phosphatase: 448;  ALT 200; AST 107;  So, these numbers were still going in the wrong direction and she asked if he was having any abdominal pain.

Until Friday, he had taken his AG221 and his Posaconazole every day along with his other medications, after getting the advice from his BMT doctor on Thursday.  By Thursday night, he was having stomach pain about an hour after he ate.  He was up pacing the floors, feeling like he did that night in the hospital when he was throwing up.  His stomach finally settled down, but I was going to ask the doctors if they thought it might be a gall bladder attack.

Friday morning, we had to leave the house by 5:30 a.m. to get to his first appointment at the Cleveland Clinic by 9:00 a.m.  First up, was the infectious disease doctors.  After a thorough exam, they said they wanted to see his blood results for the day and then confer with his BMT doctor.  In the meantime, they set up an appointment for a follow-up CT scan on November 18, 2015 to see if the pneumonia was gone or not.  I asked about the stomach pain, and they said didn't think it was anything in his abdomen, especially not the gall bladder.

After that, we headed to treatment in the Taussig Cancer Center, were they drew his blood.  one of the lab's machine was  broken, so it took over 2 hours just to get the CBC results:
Whites were up a bit at .99; Hemoglobin had dropped to 9.5; and platelets had dropped to 50,000.  ANCs and liver results were still not back by 2:00 p.m. when we headed upstairs to see his BMT doctor.

When we got upstairs, his trial nurse was there and his BMT doctor announced that they wanted to him discontinue taking BOTH his AG-221 trial drug, and the POSACONAZOLE.  I was shocked!  The liver numbers must have been bad.  They finally had the results back:
Total bilirubin was 5.6, but the Alkaline Phosphatase was 558!  AST 441! and the ALT 573!

While I didn't realize at the time how bad these numbers were, I would later find out that they were off the chart and severely dangerous!  My first concern was fighting the pneumonia with NO anti-fungal drug.  I asked the doctor: can't the fungal infection get worse?  Her first response was that "they" or she still wasn't 100% convinced that it was a fungal pneumonia, but that she COULD be WRONG.  (Shocked again).  I brought up the most recent CT scans that showed nodules, which could be indicative of a fungal pneumonia, but again she said it isn't conclusive, but she could be wrong.  This raised a red flag to me.  So, what if it was fungal and they weren't going to treat it?  He would start showing symptoms again?  Yes, I could see this is what she meant; I had my answer.  If he started running a fever again, or having lung problems, then it could be proof that it was fungal.  Hadn't this already happened once while he was in the hospital?  They took him off the anti-fungals, and that night he spiked a fever. 

Then, we asked at what point could he start taking the AG221 again?  What was the criteria they were going to use?  They said at this point, his liver enzymes would all have to return to "baseline" numbers.  I asked what, 1.5?  And, the trial nurse, said no, the drug company wanted those numbers back to the levels they were before he started taking the drug!  (Another shock). Going through my mind? Without the trial drug, it would only be a matter of time before his blood counts would decline, making him neutropenic and possibly needing transfusions again!  After I brought this fear up to the doctor, she said she didn't think his numbers would decline that fast, but in my mind I remember that the first week he took the drug, it reversed his situation.  Would a reversal of not taking his trial drug, make them decrease in a week?

This was not the news we had anticipated at all!  It was determined that it would do no good to continue to check his counts via blood work in Dayton, since there really wouldn't be much they could do.  Obviously, if he becomes symptomatic, can't get out bed, weak, bleeding, or other signs of low blood counts, I could run him into the Cancer Center/Local oncologist's office for blood work.  I asked if the Cipro could cause any more elevation of his liver enzyme counts and the doctor said no.

Bottom line:  Liver enzymes too high; no trial drug and no anti-fungal medications.  Return for regular trial day, next Wednesday, November 4, 2015.  He was already scheduled to go in for that day, since it would be Cycle 8, day 1, his last 10-hour day of blood draws on the trial.  So, this protocol may not take place if it is determined when he gets his CBC pre-testing that his liver enzymes are still too high and he still won't be allowed to take the drug that day.  If the numbers have come back down to baseline numbers, then they will proceed with giving him his dose of AG-221 that day, and then commence the 10 hour day of testing.

We didn't get home until about 8:30 p.m.  It had been a 15 hour day of traveling and appointments.  I drove both ways, up and back, so Todd could rest.  Even though I was tired, something still seemed "off" to me about the appointments.  The trial nurse was extremely quiet, and Todd didn't like me bringing up the symptoms of being sleepy, tired, and having the bad stomach ache the night before, but I felt there had to be some reason for this.  So, I began searching for symptoms of elevated liver functions, and bam! There is was on several websites:

Symptoms of liver damage
Jaundice; severe fatigue; fever, abdominal pain; severe nausea and vomiting; bleeding that does not stop after a few minutes; and unusual swelling in feet or legs or weight gain of greater than 3 to 5 pounds in 1 week. This from http://cancer.unm.edu/cancer/cancer-info/cancer-treatment/side-effects-of-cancer-treatment/less-common-side-effects/organ-problems/liver-damage-hepatotoxicity/

From the National Library of Medicine: Severity Grading In Drug Induced Liver Injury (DILI):
Symptoms: fatigue, weakness, nausea, right upper quadrant pain, itching, skin rash, jaundice, anorexia, or weight loss.  (paragraph 9).

Looking at these symptoms, it was clear, that Todd had many of them!  Why didn't any of the doctors he saw tell us this! NO ONE said, yes, these are symptoms of liver damage!  I have a feeling, no one wanted to tell us!  It is hard to believe they didn't know, but I guess, I could be wrong.

The more I read, the angrier and more worried I became.  It was looking like these liver enzyme numbers were indicators of some level of liver damage.

While the first chart on Severity Grading Chart is mainly for AIDS patients, the second half of the document and chart is for cancer patients on chemo drugs.  

I was also researching his liver metabolism gene mutation. Apparently, this has not helped with his liver coping with the medications. 

I'm just glad that they were mindful to watch out for high liver counts and now my apprehension of Todd going off the trial drug has dissipated. I know that keeping his liver from severe or permanent damage is more important right now. 

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

Day 9 Hospitalized:  October 22, 2015 @Cleveland Clinic

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

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

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

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

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

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

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

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

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

Thanks for your prayers and support.

Day 8: Hospitalized Fevers gone but numbers are poor

Day 8 Hospitalized:  Cleveland Clinic
CBC: Whites: .57; Hemogloblin: 7.9; Platelets: 47,000; ANCs .48
Liver Function:  Total Bilirubin: 8.7! (Normal 1.5); Alkaline Phosphatase: 219 (Normal 45-115); ALT: 52 (Normal: 7-56); AST: 46 (Normal 5-40);
Blood coagulation: PT sec: 11.1 (Normal 9.5-13.8); PT INR: 1.0; APTT: 36.3

Fever continues to stay in the 99 degree area, which technically is not considered a fever. Headache is persistent, especially after getting out of bed. Hemoglobin is still low and they had to give him a unit of blood this morning. His ANCs are also low and he is now neutropenic making him a higher risk for catching other infections! Bilirubin numbers the highest yet at 8.7. Dr.Sekeres, the attending physician was upset he took his AG221 this morning, but we didn't have the results back and there was no note to wait. Everyone yesterday, was like yes, get back on it! Sometimes, it feels like you can't win.

Dr. Sekeres, feels comfortable with letting Todd be discharged tomorrow since they know he has the Rhinovirus and the fevers are gone. However, this is conditional and if they discharge him, he will still require rigorous out-patient care, which makes his BMT doctor and trial nurse a little leery and concerned about discharging him. His BMT doctor has the final say, and she is not going to let him go without multiple appointments for CBCs an visits with the local oncologists to set up transfusions and to keep an eye on his bilirubin.

When his trial nurse came in before noon, she was not very confident about releasing him so soon.  She said a lot would have to happen.  First, they would have to make sure there are no complications or other problems between now and then.  Second, they may need to give him another unit of blood by the end of the day, to help boost him before discharge, because he hasn't been getting the 1.0 boost with the prescribed 1 unit transfusion in the past several days or in other words, his hemoglobin has not been increasing enough after transfusions like they should.  Third, he would need to see his local oncologist as early as Friday, to have a repeat CBC done to check blood counts and bilirubin counts.  Multiple appointments would then need to be set up for next week, every couple of days, to check counts again.  Treatment appointments for transfusions, would follow if necessary.  Fourth, he has to be seen 5 days post-discharge, which means we would likely have to come back up to Cleveland by next Thursday (no weekend days are counted) or he may be evaluated by local oncologist, if Dr. Hamilton, BMT doctor feels comfortable with this.  I know it is difficult for them to not be there to make this critical decisions.  Repeat x-rays will also be necessary at some point too.

Right now, Todd has a killer headache and still feels poorly, he just got some pain meds and is sleeping.  It is hard for me to think about discharging him with low blood counts and him feeling so bad, but I know there is also risks of infections in a hospital too.  So glad we made the trip up here, even if it was only for a few days.  I feel like they have made better decisions for his care here.  No regrets.  Wish we had done it sooner.  Next time, I might just drive him up to Cleveland myself, right away, as long as he is not critical. 

Day 7 of Hospitalization: Todd improves

Day 7:  October 20, 2015.  Todd hospitalized; now at the Cleveland Clinic
CBC:  Whites: 1.18; Hemoglobin 7.1; Platelets 37,000; ANC ?
Liver function: Bilirubin 6.8; Alkaline Phosphatase 172; ALT 53; AST 33

It was a busy morning, but with some good progress. They just took him off oxygen and his fever has been staying around 100 or under. He was given one unit of blood. They are still using ice packs and Tylenol in very limited doses. Many people were in and out today, including the Doctor on call, which was Dr. Sekeres, who is the Principal Investigator for the AG2221 Study Trial at Cleveland Clinic. He recommended that Todd get back on his trial drug today.  He did not want to call in an infectious disease doctor until they had reviewed the CT Scans of Todd's lungs from Miami Valley Hospital.   Todd's Research Nurse also came up and answered all of our questions!

There is so much information here, I will try to not digress:

• We learned or were reminded that Todd has a genetic mutation, UAG1TA1 that causes him to metabolize things differently in the liver.   They both agreed that while Todd's total bilirubin is high, the other liver numbers are good, so he was able to get back on his trial drug this afternoon. That should hopefully help with the low blood counts.  I asked at what point do we need to be concerned about his liver shutting down, and they said it differs from person to person, but Ashley felt he is far away from that happening. See: Liver Blood Tests
• She will come over to take the blood draws for the trial.  He had an appointment to be here tomorrow anyway for Day 15, Cycle 7 trial tests.
• The last bone marrow biopsy results are back, and the blast cells have stayed the same as the prior biopsy: blasts at 2%  This is good news. The disease is stable and not progressing.
• I asked if the antibiotics were working or if they needed to prescribe something different.  She explained that the Zosyn is for broad coverage for bacterial infections like the pneumonia and the Vancomycin is a Glycopeptide antibiotic for strep (mainly MRSA), and skin infections.
• She also asked if he was having hallucinations, crazy dreams, or visions from taking the Voriconazole.  This was the first we had heard of this side effect!  He said yes; he thought he was loosing it!  One night after we turned off the TV he complained that everything in the room was yellow, or all he could see was yellow.  Last night when he got up to go to the bathroom he thought his IV pole looked like a Christmas tree with dancing lights around it.  He also had some crazy dreams, but couldn't remember all of them.  I guess the effects lessen the longer you are on the drug, so hopefully he won't be tripping for long!  No one at Miami Valley told us this side effect, only that he might need to have his eyes checked and that it could make him dizzy or light-headed.  
• We learned the food service is undergoing major changes and the last company who handled it was fired and now the interim company they hired until the new company begins, has very poor customer service.  Bummer.  Of course, he hasn't felt like eating much, but when he requested a bagel and cream cheese for breakfast, they send a plain slice of toast instead and no banana claiming they were out of both!
• Dr. Sekeres is highly respected and published in the hematology/oncology community. Even though I was disappointed with the amount of time he spent with us today (he was also looking at the clock ready to leave).

Continuing IV antibiotics but changed the anti-fungal to an oral pill instead of IV. All seem hopeful that if his fever continues to diminish, that they can start to ween him off of the IV antibiotics in the next few days and we might be out of here by the end of the week. He still feels weak and tired from the low blood counts and constant fevers.

By early evening, we received news that all the cultures and the influenza test came back negative.  The only thing that came back positive was for Rhinovirus, or the Common Cold.  This is transferred by droplets in the nose or mouth, so now anyone entering the room only has to wear a face mask.  Todd's BMT doctor came up to see him about 5:30 p.m.  She said they looked at CT scans and they all agree that that there is a pneumonia in that bottom left lung.  She said that could or could not be the cause of all this, with the addition of the Rhinovirus/Cold.  She said there was no way to tell whether or not the pneumonia is bacterial or viral without the biopsy done via the bronchoscope, which they have no intention of doing.  She agreed that it is too risky to do it, especially since it is located in the lower left lobe of the lung, and since his platelets are too low.  Just going in to look and not biopsying would be too risky and not worth it.

She agreed that things are going to be on a "wait and see" approach over the next few days, looking for continued progress including watching for the deescalation of the fevers, anti-fungal,and IV antibiotics.  She seemed to think that we might be out of here by the end of the week, as long as there are no complications, but cautioned us to just take things a day at a time. 

The day ended pretty well. Todd seemed to be able to be less lethargic but his headache became more painful after getting up to go to the bathroom and brush his teeth. He had to take 2 small doses of oxycodone. He started to have some sinus drainage and requested something for it.

He still isn't eating much, but he just doesn't feel like it.  He hasn't lost weight, but has gained it due to all the fluids and IV medications they have given him.  But there is no swelling or edema, so they are just keeping an eye on it.

It would be unbelievable if all this sickness was from the common cold with his compromised immune system and/or the viral or bacterial pneumonia.

The nurse asked us if we regretted having the bone marrow transplant and if we had to do it all over again would we do it.  Todd said no regrets; he would do it again.  I, on the other hand, have some regrets and knowing what I know now, would have waited I think. It is really hard though to second guess yourself afterwards.  I have learned to eat my words several times.  I remembered telling Todd last year while we were here for his transplant, walking up and down the halls on the leukemia side of the floor (where we are now).  "Just think with the transplant, you will never have to be on this side of the hospital ever, like all the other AML patients had to."  And, here we are, post-failed transplant, on the Leukemia side of the floor.  Life has a way of proving you wrong. 

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.

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. 

Seeing Early Results within 5 Days of Starting Trial Drug

Todd holds up the AG-221 Trial Study Drug

We are so excited that Todd finally got to start the Trial Drug AG-221 on Monday, April 20, 2015, at the Cleveland Clinic. We had to be there from Sunday night April 19, through Thursday morning, April 23.  My mom graciously stayed with the kids.  Monday was a long day, beginning with testing at 7:15 a.m.  He took the first dose of the drug:  200 mg or 2- 100 mg tablets with food  around 9:00 a.m. with hourly tests of EKGs and blood draws for 10 hours beginning shortly after.  His blood counts were low that day with his hemoglobin at 7.6; whites .47; platelets 34,000; and ANCs/neutrophils too low to count.  So, once they checked the protocol to make sure it was alright to give him blood during the testing, they ordered him two units of blood to be transfused while he was there.  We finished that day around 7:00 p.m.

The next morning, Tuesday, April 21, we had to be there around 8:30 a.m. for lab work and testing.  No drug was given this day.  The protocol called for one dose on Day -3, which was Monday, then to do testing and evaluations for the next 72 hours.  So, we had to go back Wednesday for another easy day of morning testing and no medication.  Thursday, April 22, 2015 (my mom's birthday!) was considered the official first day or Day 1 of the trial drug.  It too was a relatively easy day.  We were able to finish up early and head home.  For all the months and preparation leading up to beginning the trial, three out of the four days we were relatively uneventful!

Overall, we are pleased with how everything went at Cleveland Clinic.  Todd got to see his bone marrow transplant doctor on Monday and Thursday.  I love the research nurses Ashley, Samantha, and Chad.  They were very good to us.  The Cleveland Clinic was able to fund our hotel stay for this initial visit at a nearby hotel between downtown Cleveland and the Clinic; mainly because we were on the waiting list for the Hope Lodge, but were unable to get in.   We were able to submit travel expenses including Todd's meals and gas/mileage for reimbursement.  On all other trips, we have to pay for our hotel stay, unless a room becomes available at the Hope Lodge, but we can submit those expenses also.  God continues to provide for us!

While we were there, we visited our friend Rick, from the Transplant Floor.  He had been admitted to the Leukemia floor trying to fight his relapsed AML since March.  The chemo has taken the toll on him.  His hands and feet were peeling and yellow from jaundice.  He wasn't as responsive like normal. He has a bowel blockage and hasn't been able to eat solid foods; unfortunately, he can't control his bowels at all, they believe that is also a side-effect of the additional chemo.  He has to have platelets and blood transfusions every day!  They are also giving him potassium for his brain.
As a follow-up, I talked his wife on Wednesday, April 29, and they were in the process of moving him to hospice closer to home.  The doctor said he may have 2 weeks to 2 months to live.  He has 50% blast cells in his blood stream, and does not have the same gene mutation Todd does, which makes him ineligible for AG221 drug study.  Please pray for him in his last days and for his family as they go through this difficult time.  

Todd had to have routine blood work done on the following Monday, April 27, 2015.  We were afraid he was going to need a transfusion, because he had been feeling fatigued the day before and spent most of the day in the bed resting.  To our surprise, his numbers were good!  He needed no transfusion since his hemoglobin count was at 8.8. His white count went up to 1.0 which hasn't been that high in weeks or months! His neutrophils were still low at .700, but at least he was above the neutropenia threshold of .500 and his platelets were at 60,000! We were praising God for these very early results. He had only taken 5 doses of the trial drug by this day and we want to believe that the increase was the result of the medication beginning to work.

The weekend we got back home, we started working on the house again, trying to get it ready to sell.  We both worked a little too hard and too much, but not without help.  That day, I had my good friend Dana come over and she went to work on helping clean out my bedroom closet, so it didn't look cramped or cluttered.  We got a lot done! Monday, I spent finishing cleaning the closet and taping up boxes and moving them out to the garage with the help of my good friend Darsie.  Tuesday, we were blessed with the help of our great friends Chris and Lynda; the guys worked outside in the yard and Lynda and I cleaned and straightened up the Piano Room and Dining Room.  We got so much done! 

In addition to working on the house, we have been selling our furniture and other items as we go.  I take photos and then we post the items online and usually spend the next day or two taking emails, texts, calls, and arranging pick-up times.  This has been a good strategy, since we are getting things removed now before showing the house and before I attempt a garage sale (which is so much work in relation to how little people are willing to pay). 

By Wednesday we needed a break! We had to pack for our trip to The Cleveland Clinic, but at least I was able to help Ellie pack up some keepsakes in her room before leaving late that night.   Thanks to Todd's mom Ann and our former neighbors Joni and Raymond, for all the boxes and packing materials!

We arrived around in Cleveland around 11 pm last night and hit the bed, since we had to be at the hospital the this morning, Thursday, April 30 before 7:30 a.m.  The day's appointments went well.  Todd saw his doctor and the research nurses got busy asking their questions, doing the EKG and blood work for the trial study.  He was scheduled to have a transfusion today if his hemoglobin was below 8.5, but we learned that it was at exactly 8.5, so everyone was in agreement that since Todd was feeling pretty good, they were going to hold off on transfusing him for today.  The rest of his numbers were down slightly, his whites went down to .830; his platelets down to 41,000; and the nurse contacted us later with the other numbers, namely his neutrophils, which have dropped to .530 making his nearly neutropenic again.

What's Next?
He is scheduled for routine blood work every Monday at the local oncologist's office, so we will see how his counts are on Monday, May 4, 2015.  If he needs transfused, the local oncologist will make arrangements for him at Miami Valley  Hospital before his next appointment at the Cleveland Clinic on Thursday, May 7, 2015.  This is going to be another long day of tests, because it is Day 15, or about the half-way point of the Cycle 1 of his drug trial.  In addition to hourly blood draws for 10 hours, he will have EKGs, and a bone marrow biopsy (his 15th? I think, he has had so many, I have lost count). They have also scheduled a treatment appointment for transfusion, if he hasn't had one by then and needs one. The protocol of taking the drug with food will also change at this point.  Instead, he will have to fast for 2 hours before taking his scheduled dose at 9:00 a.m. and then wait for 1 hour after taking it before he can eat.

The only concern so far is his bilirubin levels, which were elevated, however, even this is expected in the beginning.  The research nurse assured me that these levels typically come down as time goes on.  They are not concerned about these levels because his liver numbers and the direct bilirubin numbers both looked good.  They only thing that I noticed today, was a slight yellowing in the corners of his eyes; the nurse agreed that there was a slight bit of yellowing, but that this is a known side-effect of the drug.  If it gets too high, they will interrupt the dose or decrease it, but that his current levels are no where near needing any of those adjustments now.

On a personal note, we will continue to work on getting our house ready to sell.  Which means, I will be enlisting another round of volunteers to help me inside get things de-cluttered and cleaned for showing.  Todd won't need much more help outdoors, but mainly indoors, with a bit of painting projects, changing light bulbs inside and outside (some days I don't want him on a ladder), and repairing a bit of drywall.  Tomorrow, I'm going to help our oldest daughter Abby finish moving things out of her dorm room.  I can't believe she is done with her Freshman Year of college already!  I need to work on preparing a graduation party for Hannah Lewis, including buying decorations, ordering food, etc.  Ellie's last club volleyball tournament is this Saturday: yahoo!  And track season should be ending soon too.

Please pray: 

• That we can get our house on the market in about two weeks.  The market is still hot and we can't really buy or write a contract on anything til we have ours sold.
• That Abby and Hannah Lewis find jobs soon.
• That I can get get the majority of packing and selling done before I start summer classes in June.  I also have to turn in my application for a fall practicum by June 6 or so, and I don't have one lined up yet.  If I can't do this, I won't be able to graduate by the end of the year. 
• Continued improvement of Todd's health and stamina; namely, that the drug will begin to help his counts go up and the need for transfusions go down.
• Family issues and dynamics as we continue to undergo weekly family counseling
• That the transition of moving to go smoothly.  That God would open and close doors: find the right buyer for our house and the right house for us to buy.  We have been struggling to find  a house that isn't too big or too small that will give us enough financial breathing room while Todd is on disability and I finish my degree.  The physical demands of moving and the emotions of giving up our home and most of our belongings is traumatic, even though we understand they are just material.  This is the only home Ellie has really known and both of her siblings will be gone at college this fall; all this will be a big adjustment for her. 

As you can tell, there is just so much uncertainty in our future.  We are doing our best to take things a day at a time, but with such upheavals and the constant concern for Todd's health, me and the kids are feeling a bit anxious and emotional. (Not Todd, he is in a different place than we are!). We understand the wisdom of asking God to give us just what we need for that day, and not to worry or be anxious about everything else, but we need reminded!  We also understand that we need to take these feelings to God through prayer and that he will supply all of our needs.  Please pray with us.

As always, we appreciate your love and outpouring of concern and support.  It means so much, to see our friends and family helping us through all of this day by day.