Tired of low Counts and Transfusions

I made sure to go with Todd today to get his chemo. He was scheduled for blood work today to see if he needed any transfusions. The Cancer center has been so busy this week, there were few open chairs for patients and their caregivers. 

Todd's hemoglobin came back at 7.6, under the 8.0 threshold requiring transfusion. We were also warned that his whites were at .300 and ANCs were at .100; both so terribly low. Of course, he received his chemo today anyway. Just one more day to go. A friend from the transplant floor called to check on Todd yesterday and she said she had treatment with Vidaza in the past with similar low numbers and she did fine. She did stress how important it is to get to the hospital in a timely manner though if a fever develops. His nurse also cautioned him about the neutropenic guidelines, which we have already been following. It is comforting to know that he is on antibiotics and antivirals just in case. 

After waiting for about 15 minutes for a scheduler to set up a transfusion appointment at the hospital, I decided that was long enough. We were NOT going to sit around for hours waiting for orders or for the transfusion to get scheduled. Our nurse was so busy; I knew I had to be proactive. 

I went out and explained the situation to one of the schedulers. She started checking on where his "Stat" transfusion orders were at. Within minutes she was on the phone with Miami Valley Hospital getting him in. I was so thankful!  She knew all the protocol to follow, who to call, and had our appointment set up in about 10 minutes!

We grabbed something quick to eat knowing we would be at the hospital for hours. We arrived at Miami Valley Hospital in Dayton and they got him into a chair in the Advanced Treatment Area and we began the long drawn out process of getting blood. This includes the patient History, vitals, signing waivers, getting a type and screen, waiting on the blood to be sent down, giving him pre-meds (Tylenol), having two nurses verify the blood and patient, and finally starting the first unit slowly for the first 15 minutes to make sure he doesn't have any reaction to the blood. This takes about an hour and a half or more. 

If there is no reaction, they increase the speed of the infusion. Each unit takes about 1 1/2 hours to run and he usually always gets 2 units. And of course it takes time in between to get the second unit sent down, verified, vitals collected, and get it started slowly. Today getting two units of blood took over 5 hours, which is pretty typical. 

It is nice getting treatments at the Cleveland Clinic because Todd could get everything in one location, instead of here in Dayton he has to go to the Cancer center for his chemo and then to the hospital for the transfusion. While they are more protective of their patients at Cleveland Clinic than at Miami Valley, I didn't miss the nearly 4 hour drive back home like we have to do when we go to Cleveland. 

With Todd's ANCs and white counts so low, I didn't like him being in a room with just curtains separating him from people they were bringing in pneumonia or others who are hacking and coughing loudly. I think this was because the advanced treatment area is also the express admission unit. 

All that aside, I'm so grateful to be home in our house, in our own bed, with our children in Dayton receiving treatment for Todd right now. We will be back in Cleveland soon enough. 

Todd fell into bed and rested after getting  home. He ate a little bit and relaxed with the girls. I was concerned that he has seemed a bit down in addition to being so worn down physically the last few days. So, I am appealing to those of you who care enough to read this blog to pick up the phone and give him a call this weekend. He knows you have been faithfully praying for him, but I think he would enjoy hearing from you too. May God bless you!  

Transfusions and CBCs in Dayton too slow; Todd becomes Neutropenic

When Todd went in for his third day of Chemo on Wednesday, January 14, 2015, they checked his blood counts again.  His hemoglobin dropped from 8.0 on Monday to 7.9 on Wednesday.  So, he needed a transfusion. 

But the nurses and staff can't seem to get the ball rolling.  First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn.  Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port.  The phlebotomists are not allowed to touch it.  They can only draw from his arm.  So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood.  This has taken anywhere from 30 minutes to over an hour.

After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes.  He was tired of waiting.  So, they got the sample and told him it could take up to an hour to get the results.  He was tired and so he told them just to arrange to have the transfusion done the next day.  They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon. 

He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems).  So, he waits an hour for them to get the type and screen.  Then they have to order the blood.  It always takes about 1 1/2 hours per unit of blood and he always gets 2 units.  So, needless to say it was a long day. 

Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days.  If he needs a transfusion, he can have it done there (supposedly).  When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done!  So, he has to wait til they call the doctor and get orders.  Then, there is no nurse available to take blood from his Hickman again, so he waits.  After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample.  Then, they say it is going to take another hour to get the results and that is with it labeled "STAT."  Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.

Hours later, they call.  Instead of giving him his CBC results, they just said he whites were low at .7 and that's all.  So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him.  He has to leave a message for someone to call him back.

Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again!  I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results.  At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes.  So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it.  She said, "He has good veins, they can just stick him."  And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck!  It could cause him to bleed and bruise!"  And she says, "Yes, I guess your right.  I hadn't thought of that!"  Ugh...

Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting.  He doesn't have much energy or patience right now.  Who would? No patient should have to go through this much confusion and waiting!

It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements.  I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.

 He finally got a call back from another nurse with the other results:  His Hemoglobin is a 9.3, well above an 8; no transfusion needed.  His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed.  But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes  him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc.  These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them.  Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too. 

It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so.  That being said, its not good that they are this low.  We all are going to have to be careful in the meantime.

I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics.  We are not sure what this visit will entail except for the routine CBC and seeing the doctor.  I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant.  At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease.  He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant. 

I will post more after Wednesday.  Thanks again for caring enough to read this blog and to pray for Todd. 

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!

2nd Round starts with bad news

Well we went in for the first treatment of the second round of Vidaza on Monday June 16, 2014 feeling pretty relaxed, only to be hit with disappointing blood test results.

Before beginning treatment they take his blood to check his white, red, platelets, ANCs, among other things. We waited for the treatment to start for some time until Todd's nurse came over and told us that Todd's blood counts were very low and she was waiting for his local oncologist to review the blood work results and make a decision whether to proceed with treatment today. The concern was that blood counts typically drop the first week of treatment.  If they are already very low to start with, they are very likely to go even lower, maybe dangerously lower. The doctor needed to evaluate this risk first.

We were in shock. We were still riding the high from the news of his elevated platelets. 

We quickly learned that the platelets had already started to drop before treatment because on his last appointment his local oncologist was looking at his results from the prior week without waiting to see that day's result before the consultation. In reality, his platelets had already dropped from their all-time high of 136,000 on June 2, 2014 to 85,000 on June 10, 2014.  While this number was still good, it showed a quick decline.

So, on the day he started this round, his platelets had dropped to 75,000, but this was not as bad as his white blood count that had dropped from a 3.5 on June 2 to 2.0 and his Absolute Neutrophils (ANCs) had gone from 2.4 on June 2 to 1.1 on June 10 to .4 on the first day of this treatment, June 16, 2014.  All his numbers had dropped below the normal range lows  according to this day's results.

He was in disbelief.  He questioned the results and I reassured him that there was no manipulating blood counts.  We both quickly realized that the Vidaza's positive results were short lived.  I began to cry realizing that the Vidaza was not likely to keep him a state of "remission" for long.  The need for the transplant was still there if not more so.  I think that fact became a true realization at that point: the transplant was inevitable.  

While sitting there, Todd looked at his messages from his transplant doctor at the Cleveland Clinic.  The cytogenics results were back confirming the same chromosomal abnormalities and deletions.  It was her desire to continue the Vidaza for at total of 4 rounds.  I said he would likely be ready for the transplant after numerous rounds of feeling bad from the Vidaza and knowing the results would be short lived.

The nurse returned with the green light from the doctor to begin treatment. While the doctor was concerned that his blood counts were very low, he wanted to continue treatment with the hope that eventually the Vidaza would begin working and would bring his numbers up quickly after the initial first-week dip.  She began with his pre-treatment medication of the Aloxi (which he will get every other day for nausea) and then began the 30 minute treatment of Vidaza.

Blood work will be repeated next Monday.