First Week of Outpatient Clinic Visits: MD Anderson

Todd waits in the Sundial lookout area of the ATC at MD Anderson.

Todd had his second fast track outpatient clinic visit at MD Anderson on Friday, October 27, 2016. We didn't get much sleep the night before. Todd wasn't feeling well, so we went to bed late and he got up around 4:30 am in pain and discomfort. We had a couple early morning phone calls and texts from home around 6:00 am and decided to get up and try to get to the clinic early for his appointment. They schedule a time but we can arrive any time before 10:30 am. The sooner you arrive (any time after 6:30), the sooner you can get a transfusion appointment and be out of there for the day (supposedly).  Wednesday we didn't get there until about 10 am, therefore, we didn't get a transfusion appointment until 4:00 pm and they were running at least an hour behind. So, we didn't get out of the hospital til about 7:00 pm. There is a joke that the other patients tell the newcomers to the ATC (Advanced Treatment Center):

Do you know what "MD" means in the name MD Anderson?  Answer: Most of the Day!

On Friday, we didn't arrive until after 8:30 am due to some traffic delays. Labs and vitals were quick. His hemoglobin was still at 10!  Platelets were very low again at 4,000. No whites or ANCs yet. Today his results appointment was with Dr. Benton. His PA came in to discuss his symptoms, medications, and do an exam.

I was concerned about his lack of energy and excessive sleeping even though his Hemoglobin has been so high. He has seemed less responsive to me the last 7 days or so. There are so many things I need to be aware of besides fever, like headaches, new pain, heart palpitations, and symptoms of a brain hemorrhage (like Todd being hard to wake).  So the PA performed a cognitive exam along with the physical exam. She felt good that there was no leaking of any blood vessels in the brain afterwards but noted his extreme fatigue as well.

Dr. Benton came in and was glad to finally see Todd "in-clinic" instead of in the hospital. He acknowledged that Todd's counts were low but expected, well except for the platelets being so low. He said he noticed that Todd's platelets were having a difficult time recovering. I mentioned that he had the same issue post-transplant and even on the trial drug AG221; his response was without "platelet recovery." 

He quizzed us asking if we knew what happens to the platelets: they are taken by the spleen, used up, and/or destroyed by the body if it sees the transfused platelets as enemy invaders. He suggested using HLA matched platelets if Todd's numbers don't get out of the single digit thousands 1,000-9,000 soon. I mentioned that Cleveland Clinic had tried this too after transplant. This last scenario is what

Dr. Kornbleu meant when he said Todd could have built-up antibodies against the transfused platelets.

For some reason the platelet transfusion protocol includes giving intravenous hydrocortisone prior as a pre-medication. Every hospital has difficult protocols but this is the only hospital that has done this. They do it to help prevent a reaction to the platelets, but Todd has never had an issue with this. They also do not run the platelets with an IV pump in the ATC. Instead they just use gravity to run the platelets. The only risk associated with the use of hydrocortisone prior to transfusion is that they can weaken the immune system. Todd has been getting platelets every day or every two days. It is probably not a good idea for him to have the steroids/hydrocortisone that often. So we asked them to stop using them as a premeditation. Why didn't any of the nurses or doctors suggest this?  Apparently they use a small dose, but we still felt like another unnecessary risk, even if it is a small one.

Dr. Benton wasn't worried about Todd's extreme fatigue. He explained that Todd's marrow is at its "nadir" or "low point."  (Chemocare.com 2002-2016).

"The nadir time is usually about 10 days after treatment..." (Chemocare.com 2002-2016).

Dr. Benton feels that this period of "nadir" where the bone marrow bottoms out is really Days 14-21. He said that we need to start counting days from Day 6 like it is Day 1 to determine or gauge where Todd is at. Days 1-5 was just the DAC, which is not the same as the harsh chemo that started on Day 6. So, as of Friday, Todd was at Day 18.

He also explained that everyone reacts differently to chemo. Todd didn't lose any hair or get diarrhea or multiple mouth sores like some patients. For him, his symptoms have been severe fatigue and aches/pain. He set up an appointment for Todd to see a specialist who helps patients manage their symptoms better on Thursday, November 3, 2016. In the meantime he wants Todd to come in for a CBC and platelet transfusion on Sunday, October 30 through the out-patient clinic because they want to do the bone marrow biopsy on Monday, October 31, 2016.   He wants to see either an "empty marrow" or a "recovering marrow" for the results. We don't want to see any blasts. If there are blasts, they will likely add another round of DAC at the least. It might also push back transplant dates.  

I had some questions regarding the conditioning and eligibility for any trials that can be used along with the transplant. I have been researching what MD Anderson offers and there are at least 2 I would like to see if Todd would be eligible for. One uses pre-engineered cells to help reduce the possibility of getting Graft versus Host Disease and another that uses NK (See article on Natural killer cells).  We have only seen

Dr. Ciurea, the transplant doctor, once for about 15 minutes on the first day of Todd's induction chemo. I told Dr Benton that I would like us to sit back down with Dr. Ciurea to get a better feel for what the plans are for transplant. He agreed and set up an appointment for us to see Dr. Ciurea on November 10. Dr. Benton said he wishes that we could see what goes on behind the scenes because the doctors working together are in constant communication with each other. I told him that I didn't doubt that, but I wanted to be kept in that communication loop too.

Speaking of which, I've been frustrated with the timeline of getting Abby out here for testing. I hope I have already mentioned that they want to use Abby, our oldest daughter as the best Haplo or half match bone marrow donor. First, they wanted to get her out here right away, but then they said it would take 2 weeks at least to get approval. So, tentatively, here are the dates for transplant:

November 15-18

Abby comes out for exams and talk with doctors.

November 21

Todd admitted to hospital one week prior to start bone-marrow-killing chemotherapy

November 28

Transplant day. They will harvest Abby's bone marrow that morning and start transfusing him after. Then the 100 day begins.

SUNDAY OCTOBER 30, 2016

Today, Todd had to come in for a CBC and platelet transfusion. Since he is having the biopsy tomorrow they want to boost his counts. They like the platelets to be >30,000 but we all know that's not going to happen right now. Today's counts: Hemoglobin hanging in there 9.6. Platelets 2,000; no whites or ANCs.

  

I love meeting other patients and their families. Friday I met Burt (in his 50s) and his mother. Burt has a rare type of Leukemia and is recovering from his first bone marrow transplant. None of his siblings were a match, so he used a full match from the National Donor Registry; a young 21 year old man who thankfully donated. They were so grateful to this young man and his donation! 

Today, we met a gentleman named Thomas (age 69) and his family. He was just recently diagnosed with MDS. He was feeling tired and was diagnosed with a terrible kind of pneumonia, which he is still recovering from. He was here getting his second round of a trial dose SGI-110, a great treatment drug from Seattle Genetics used to treat MDS with CD33 mutation. There is a lot of buzz about this drug and initial testing looks promising. The doctors at The Cleveland Clinic recommended this for Todd at first, but he didn't qualify for it because he had received prior treatment for his MDS. There is an immediate comradely between cancer patients. We become one big family in the same fight, on the same team. It's a fight that involves the uprooting of the lives of the patient, caregivers, and family members of all ages. We lean on each other. We learn from each other’s fight and we share openly love and hope. Cancer is no respecter of persons but cancer families bond together respecting all persons.

References:

NK Cells: https://www.mdanderson.org/publications/oncolog/february-2015/natural-killer-cell-therapy-may-augment-treatment-of-hematologic.html

SGI-110 Trial Study:  https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/clinical-trials-index/clinical-trials-detail.ID2013-0901.html

Regulatory T Cells Pilot Study to prevent Graft versus Host: https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/clinical-trials-index/clinical-trials-detail.ID2014-0150.html

October 26, 2016: First Fast-Track Outpatient Appointment

Wednesday, Oct 26.

Today, Todd has his first Fast-track Outpatient Appointment at the Leukemia Clinic at MD Anderson.  It was a learning process.

We left the hotel in the morning, after rush-hour traffic.  I couldn't believe how fast and close we were to the hospital from the hotel taking the highway.  When there is no traffic, it is definitely close enough. 

The Outpatient Leukemia Clinic is a well-oiled machine.  They have the process down to a science.  First, you sign-in and go have labs drawn.  Then you go to have your vitals taken.  Then, you wait...About an hour or two later, they call your name and you go into an exam room to go over your results with a nurse.  Todd's counts were mixed.  His Hemoglobin was a remarkable 10.0!  (No transfusion of red blood needed), which is the highest it has been in months!  His platelets however, were 2,000 the lowest I can ever remember.  His potassium and magnesium were low, so he had the choice of having them infused, which would take 2 hours or he could take pills; of course, he chose the pills.  He needed platelets, so we couldn't get a treatment time in the ATC or Advanced Treatment Center until 4:00 p.m. 

They also informed us that the transplant team had scheduled a Pulmonary Function Test at 2:00 p.m.  So, we went there first, even though we arrived early.  After that, we had to sign into the ATC area.  We were at least 2 hours early, but signed in hoping that we could get in sooner, but that didn't happen.  They have a huge waiting area called the Sundial on the floor with reclining chairs that face large plate glass windows overlooking the valet area, couches, and tables and chairs.  While waiting we met a retired preacher from Cold Springs, TX who grew up near Akron, Ohio.  He was over 70 years old, had AML, and had been through 2 prior transplants, relapsing both times.  At the present time, he was on DAC chemotherapy every 6 weeks.  I didn't know that DAC was used as monthly treatment, but it is a hypomethylating agent, like Vidaza, which I know they use as monthly treatment until it stops working.  I found this news a little upsetting.  It plays on my old thinking that transplants don't work or work that often.  His caregiver thought it is all about the money, insisting that patients try transplants, especially multiple times.  We had agreed with this sentiment before Todd's first transplant; we felt pushed into trying it, that it was the cure-all to end all, which we shortly learned it wasn't.

We didn't get back to a room until about 4:20 p.m.  One unit of platelets usually takes between 30 min- 1 hour depending on how fast they are run.  While getting his transfusion, the Bone Marrow Transplant Coordinator called Abby to get some general health information over the phone (can she walk up stairs, etc.).  She told Abby that they don't think they will be able to see her next week either!  The Coordinator said it might be in 2 weeks!  We are going to get dinner and retire to the hotel. 

We come back on Friday, October 28, 2016 for his next out-patient clinic appointment.  This time, instead of seeing a nurse, we will go over the results with Todd's Leukemia doctor here, Dr. Christopher Benton.  I have some questions to ask and I am looking forward to seeing him.

Before I go, I wanted to share this prayer that my fried Robin Chew, from my former office at Northwestern Mutual, that Todd and I plan to read and pray everyday.

October 15, 2016 Chemotherapy is done.

Chemo is done!  Todd will likely be discharged on Monday notwithstanding any complications. He still needs transfusions daily so I'm not sure how that is going to work coming in every two days. The low Hemoglobin is not so much a problem if he has to wait a day, but his platelets have been under 10,000 for days. Even with multiple platelet transfusions yesterday they could only get his count up to 7,000. We will likely be staying in a hotel nearby for the first few days to weeks. Pray that God will handle the logistics and keep Todd protected from a bleeding incident or hemorrhage. Pray that the find a donor quickly.  The kids have already completed their HLA blood work along with his other brothers.  Now we wait...

AG221 Trial Comes To An End

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

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

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

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

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

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

-The American National Red Cross. 2016

  
Cleveland Clinic Trial Appointment Cycle 19, Day 1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

God Bless!

Day +101: Platelet transfusion needed

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

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

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

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

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

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

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

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

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

Ready for Discharge? Blood Counts are Climbing!

Todd was unhooked from his IV pole today, October 5, 2014. He gets hooked up for some medications and transfusions,but they are switching him over to pill-form of most of his medications, getting him ready for discharge this week.

On October 4, 2014, Day +18, Todd's blood counts were not only climbing, but his white blood counts and ANCs (neutrophils) more than doubled!

 On Friday, October 3, his white count was 360.  On Saturday they jumped to 970.  The goal for discharge from the hospital is 1,000.

His ANCs on Friday were pretty much non-existence and on Saturday they jumped to 890!  The goal here for discharge from the hospital is 500.  So you can see he has already cleared this hurdle! 

While his Platelets were still only between 6,000-7,000 the past three days, there was already talk of him being discharged as early as Monday!  Neither of us was prepared for this.  I started gathering unnecessary items to take out of his room and made plans to prepare the hotel room for his arrival.
 
By today, Sunday, October 5, 2014, Todd's CBC blood counts were: Hemoglobin 8.2, Whites 1,630, ANCs 1490, and Platelets at 7,000. Unfortunately, this meant once again that he had to receive platelets.  Since the transplant Todd has had a total of 11 platelet transfusions.  We were under the impression that since there was no restriction for being discharged with low platelets, that Todd could just get platelet transfusions through outpatient visits.  However, the doctor stated today during her rounds that Todd would NOT be able to get platelets daily on an outpatient basis, so he may have to stay in the Hospital longer until his body can start maintaining his platelets after infusion (or are creating them) for at least a couple of days at a time.  Now that his white counts are multiplying they can start doing their job to allow his body to start cranking up the bone marrow to make platelets.

I'm planning on talking to the doctor tomorrow about this situation.   How many more days does she estimate this is going to take?  Can she push again for the HLA matched platelets again?  (The latest on this saga: not planning on giving any HLA matched platelets at all). Can she request platelets from a single donor instead of a bag of platelets combined from multiple donors? Would this work better?

I'm a little frustrated that they got us all excited that he could be discharged tomorrow, when he may have to stay several days longer.  Why didn't she say anything about the platelets before telling us he could leave Monday afternoon? 

Well for now we are content to stay if he has to.  We are still excited that he is doing so well and that the time to leave the hospital is drawing near.  Meanwhile, I will continue my nursing training on taking care of his Hickman Central Venous Catheter and preparing for him to come to the hotel with me.  He is looking forward to good food and sleeping in a big bed.  I'm looking forward to doing things together like eating meals together and going out. 

This is "Chester" the bust caregivers can use to practice Hickman Catheter care like changing dressings, caps, and flushing the lines.

No Platelets for Todd on Day +14--Cleveland Blood Bank cites shortage

On Day +14, September 30, 2014, Todd's CBC blood counts were:
Hemoglobin: 7.8, White Blood Count: 70, and Platelets: 8,000.   Technically, he needed a platelet transfusion since his platelet count was under 10,000 and a blood transfusion since his Hemoglobin was below 8. 

Unfortunately, the Red Cross Blood Bank located within the Cleveland Clinic denied Todd platelets because of the platelet shortage they are experiencing.  (Did did receive a blood transfusion).  I was upset by this news and asked the doctor on call to come by his room to discuss this me. 

First, let me say that the doctors here are great advocates for their patients and argue our case for whatever they need to the blood bank.

Q.  I asked him why they denied him platelets?
A.  His response:  They denied him based on the concern that they have been giving him platelets daily, but that he wasn't retaining them.  In light of the shortage, they felt they didn't have enough to spare if his body was going to remove them and/or his body wasn't retaining them.

Q.  I asked about using the HLA matched platelets that he had requested?
A.  Apparently, they still were not able to provide them. 

Q.  Next, I asked if I could donate blood for platelets or if his brother, who was the bone marrow donor, could give blood/platelets that way? 
A.  He said that this was  not easy to do because it is very cost prohibitive and that there are too many clerical errors made in labeling and getting the donated blood to the correct patient.

Q.  I asked him how low did his platelets have to drop for it to be critical if he didn't get a transfusion? 
A.  His response: He stated that there was no set number they had to drop to where the Blood bank could no longer deny him platelets.    He explained that Todd's body would eventually be able to make and retain his own platelets once the new bone marrow is more engrafted. The decision is based on their own judgment.

The next day, Day +15, Wednesday, October 1, 2014, a new doctor was on rotation.  Todd's CBC was HBG: 8.5 (so no blood transfusion was needed) and his white count finally hit triple digits: 130, but his platelets were down to 6,000.  There was talk about giving him the HLA platelets, but not until next Monday, October 6.  I'm not sure the reasoning, either they felt he would be in a better place to keep them then or that they wouldn't be able to get them until them.  We were surprised when his nurse came in late in the morning saying he was getting regular platelets that day.  We asked what had changed, but she didn't know.  The doctor on rotation came in and explained that as the advocate for the patient, they argued again and did testing to prove that Todd's body was not creating any anti-bodies that was killing the infused platelets (This can happen because the body thinks that the platelets are a foreign invader and try to kill them).  Since the blood bank had this proof and reassurance, they were more receptive to the request for platelets. 

Yesterday's transfusion must have worked, his platelets went from 6,000 to 9,000 today (Day +16) October 2, 2014.  His white count jumped to 300! But his Hemoglobin was down only slightly at 7.9, which meant he needed both platelets and blood today, but thanks to the great doctors on staff here and the tests they did, he received both with no problems.  We are hoping the white count will start doubling at this point.  This gives him greater immunity to infections. 

We are all hoping to be released from the hospital one day next week, October 6-10th, Days +20-+24.  While this are the number of days since the transplant, we have actually been at the Cleveland Clinic for 25 days already.