Change of Address: HOME!

Please DO NOT SEND ANY MAIL TO THE APARTMENT WE WERE STAYING AT IN HOUSTON! 

We are flying home this weekend to spend Christmas with our family.  We have a return flight and appointments scheduled for the last week of December 2016, but if Todd is unable to fly back, we will just stay at home.

MD Anderson is not willing to accept our medical coverage that becomes effective January 2017. 
We are making arrangements for treatment at home and pray we can find him good care January and February 2017 until his Medicare kicks in March 2017.

We are concerned that Soin Medical Center does not have the specialists needed to take care of Todd's acute condition.  If, we can't get the care he needs there, it may necessary to go back to Cleveland Clinic, who will also accept our Ohio Medical Plan. 

So, please send any mail to our home address!  Thank you to all who have sent Christmas cards and Get Well Cards.  We appreciate your support.

MERRY CHRISTMAS FROM OUR FAMILY TO YOURS!

HOW TO TREAT A FUNGAL INFECTION: Part II Hyperbaric Treatments

Todd in his 100% cotton scrubs all ready for his first hyperbaric chamber treatment on November 14, 2016.

Todd entering the Hyperbaric Chamber at Memorial Herman Hospital.

Part II: Hyperbaric Chamber Treatments

The second type of treatment for fungal infections is Hyperbaric Chamber Treatments.  MD Anderson does not have a hyperbaric chamber to use for this, but nearby Memorial-Herman Hospital has both single person "monoplace" hyperbaric chambers and a multi-person chamber. 

Many of you may have heard of scuba divers or people with carbon monoxide poisoning using these treatments, but they can also be used for wound care and fungal infections. (See link below).  The concept of using hyperbaric chambers to treat fungal infections is fairly recent.  In Jennifer Durgin's article, Investigating the Deadly Potential of a Common Fungus, early studies have found that "saturating the fungus and infected tissue with oxygen in a hyperbaric chamber stops the fungus from growing." (Durgin, 2014, n.p.).

The multi-person tank that Todd went is a blue 35 foot steel-like submarine tomb that can "dive" down 6 atmospheres and provides 100% oxygen to 1 - 12 patients inside via a astronaut-looking helmet.  Each dive takes about 2 hours and the Hyperbaric Center runs two groups everyday with one starting at 8:00 a.m. and the other in the afternoon between 1:30-2:00 p.m.  Since the tank is not at MD Anderson, Todd has to get there by transport ambulance.  So, he typically leaves at noon and doesn't get back until 4:30 p.m.  This makes the day very long for Todd. 

The nurse has a hard time getting in all his treatment for the day with him being gone 4 hours a day.  The nurse gives him his platelet transfusion in the morning after all the doctors round before he leaves. If he needs a blood transfusion, they have to wait to give him that until after he returns.  His chemo drug is given between 5-6:00 p.m.  His anti-fungal medication takes 4 hours to run, so they can't do that until the transfusion is done. That takes a couple of hours to run. The pre-medications for the antifungal starts at 8:30 p.m. and the actual antifungal, Ambisome goes from 9:00 p.m. - 1:00 a.m. The night nursing assistant comes in around midnight to get his weight and vitals. The night nurse comes in by 5:30 a.m. to take his vitals and draw his labs for the day.  The nursing assistant gets the morning vitals and the nurse gives him his morning meds by 8:30 a.m.  And it all starts again M-F. 

What Happens in the Chamber:

Picture of Todd in the tank with his oxygen

helmet on; taken through a port-hole window

from the outside looking in. 

The "drivers" and crew only take the tank down to 2 atmospheres or 33 feet below sea-level.  Luckily, Todd has scuba dived in the past, so the idea of diving and equalizing ear pressure on the way down was familiar to him. 

While in the tank, the patients can read, watch TV/movies, and even enjoy a snack when they take a break while inside.  An attendant inside makes sure there are no complications, like a patient suffering ear pain.  Todd is typically bored and looks forward to a good movie. 

Memorial Herman has had this large tank since March 2016.  Todd asked about the home models you can buy, and if they were any good.  Unfortunately, they don't have the diving technology to go deep enough to effect a positive experience.  Breathing 100% oxygen alone is not the key to the healing properties; it is breathing the 100% oxygen at the 2 atmospheric levels below sea level. 

The number of treatments are key to successful treatment.  Some patients, depending on the type of injury or illness, go into the chamber up to 40 days.  Todd's doctors decided that since Todd could only get treatments while being "in-patient," they would limit the number of treatments to 10.  We tried to do the treatments on an outpatient basis, but the insurance would not cover it!  Which makes no sense.  It would seem more expensive to pay for the ambulance transport from MD Anderson to Memorial Herman (just blocks apart) and back than to allow Todd to walk-in into Memorial Herman outpatient!

We were hoping to be done with the treatments done before Thanksgiving, but the multi-person tank and staff close on the weekends and were closed on Thanksgiving and the day after.  So, Todd's stay in the hospital had to be extended to Tuesday, November 29, 2016 to get all 10 days in.  However, today, Monday, November 28, someone dropped the ball, and the ambulance transport people NEVER CAME TO PICK UP TODD!  They usually arrive at Todd's room around noon or 12:30 p.m. at the latest.  I only went with Todd the first day, because all I can do there is sit around for two hours.  Today, I decided to go down and start our laundry.  So, when I came up to the room, I noticed Todd was still in his bed and it was after 12:30 p.m.!  I immediately went to the nurse to find out what the problem was.  She said she just got off the phone with them and that "someone" FORGOT TO SCHEDULE THE TRANSPORT, but they were going to try to get someone here.  Sadly, everyone realized about 1:00 p.m. that it was getting too late to get Todd there on time, so today's treatment had to be cancelled!

They need the patients there at least 30 minutes early so that they can don the 100% cotton scrubs they have to wear in the tank and so the nurses can take all the patients' vital signs before they go in.  Everyone has to wear the 100% cotton, because they can't risk having anything flammable in the tank since there is an increased risk of severe fires with all the 100% oxygen being pumped into the masks.  They have rules about what cannot be brought in the tank:

To make a long story short, they are going to reschedule Todd's missed treatment from today to the early 8:00 a.m. group on Wednesday morning, November 30, so that Todd can be back around noon and he can still get discharged that afternoon.

For more information:

Durgin, J.  Sept 9 2014.  "Investing the Deadly Potential of a Common Fungus." Geisel News Center.  Web.  Retrieved from:
http://geiselmed.dartmouth.edu/news/2014/investigating-the-deadly-potential-of-a-common-fungus/

Memorial Herman Hyperbaric Center Webpage. 2015.  Wound Care. Hyperbaric Oxygen Therapy.
http://www.memorialhermann.org/wound-care/hyperbaric-oxygen-therapy/

HOW TO FIGHT A FUNGAL INFECTION: Part 1 Medication

How fungal spores enter the sinus and lungs.

Fungal infections were new to us.  We knew of them, since before and after Todd's first allogeneic bone marrow transplant in September 2014, but fortunately, Todd had never had one until now.  There was so much we needed to learn. 

At first, we were told that they are 1) hard to fight; 2) can take weeks or months to get rid of; 3) can be invasive and can spread.  This is why it took so many tests: x-rays, CT scans, and MRIs, and the biopsy to confirm the diagnosis.  If left untreated quickly, it can be deadly.

One of the better articles on the subject is and is referenced at the end of this post.  If you are going to any reading beyond this blog on the subject, I would recommend it as a starting point.  I want to pause here to include an interesting paragraph:

The increase in the incidence of IFI has resulted in a substantial increase in the length of hospital stays and healthcare expenditures [Morgan et al. 2005; Dasbach et al. 2000]. As an example, compared with cancer patients without aspergillosis, cancer patients with this disease stayed in the hospital for an average of 26 more days (33 vs. 7 days), incurred US $115,262 more in total costs on average, and had four times the mortality rate during hospitalization (31% vs. 7%) [Dasbach et al. 2000]. (Bhatt, Viola, and Ferrajoli, 2011, Epidemiology, par. 3).

The reference made here that an increase in Infectious Fungal Infections (IFI) is due to the "increasing frequency of infection by non-Aspergillus molds (e.g. zygomycosis) and the emergence of drug-resistant fungal pathogens." (Bhatt, Viola, Ferrajoli, 2011,Abstract).  I also found it interesting, in this one example, that the cancer patients stayed an average 26 more days in the hospital.  Todd was diagnosed solely on a fever and a little jaw/facial pain.  He was admitted on November 5, 2016 and we are hoping he will discharged on November 29, 2016, a total stay for 24 days; uncannily close to the 26 days in this example!

Treatments

I wanted to discuss the three types of treatment used to treat fungal infections: antifungal medications, hyperbaric treatments, and white cells.  In Part 1 here I will explore the first treatment:

1. Heavy duty antifungal medications for long period of times.

They can try to give specific antifungals if they can determine the type of fungus, but this often takes weeks for anything to grow in a culture.  In Todd's case, one of his cultures grew a Penicillium fungus used to make penicillin, however, it is extremely rare for this to actually be the type of fungus found in the sinuses.  It is usually only contracted in Eastern Asian countries like Thailand, northeast India, China, etc. (Chen, et al. 2013, n.p.).  So, the infectious disease doctors were very skeptical that this type of fungus grew from the biopsy of Todd's sinus.  Instead, they think it came from a contaminate from the lab that landed onto the petri dish and grew.  The most common strains come from molds and yeasts and are too numerous to recite here.  While Todd was already taking  a prophylaxis or preventative antifungal medication like Voriconazole while his white counts and ANCs were at zero, it wasn't enough to keep him from getting a fungal infection. 

The million dollar question: How did he get it? 

It is likely that he got the infection from simply breathing spores in the air that everyone typically breathes in.  Normally, it wouldn't bother a healthy individual, but for immunocompromised patients like Todd, it can be dangerous.  Todd does however, fall into the "High Risk Groups" (click link), in three categories: those with "Severe neutropenia (ANC) <0.1 × 10⁹/l for >3 weeks," those with use of "Corticosteroids >1 mg/kg and mild neutropenia (ANC <1 × 10⁹/l) for >1 week" (used to prevent reactions to transfusions), and has had "High-dose cytarabine or fludarabine" (used in the first leukemia induction chemotherapy. (Bhatt, Viola, and Ferrajoli, 2011, Table 1).

They had to change his IV anti-fungal medications a few times, but finally resolved on a course of the very strong Amphotercin B, also known as AmBisome, given by daily 425 mg intravenous infusions.  According to the Wikipedia entry on Amphotercin B, it is used in "a wide range of systemic fungal infections," (Wikipedia, par. 4) and is often "the only effective treatment for some fungal infections." (Wikipedia, par. 1). So, apparently, it is the "go to" antifungal medication.  It does have some nasty side effects.  The first is called the "shake and bake" which is basically the chills and shakes.  Todd never had this side effect; he has only got hot and sweaty.  The side effects that Todd did have though were bad enough.  He had chest tightening and a painful pulse in his tailbone.  They doctors were finally able to get around this side effects with the use of three pre-medications: Tylenol, hydrocortisone, and Benadryl and by running the IV pump at a very slow rate over 4 hours. Apparently, he will have to receive AmBisome IVs everyday or every other day even after being discharged, on an out-patient basis or I may even have to give him the infusions at the hotel/apartment. 

Why the sinus?

According to a journal article published by Bhatt, Viola, and Ferrajoli, sites of fungal infections included lungs, orbito-sinus-facial structures, and cerebral regions. The statistics were as follows:

In a study of patients with hematologic malignancies, the most frequent sites of mucormycosis were the lungs (64%) and the orbito-sinus-facial structures (24%), while cerebral involvement and disseminated infection were observed in only 19% and 8% of the cases, respectively [Pagano et al. 2004]. (As quoted in Bhatt, Viola, and Ferrajoli, 2011, n.p.)

It is such a nasty infection, that certain types can spread to the face, the eye, the brain, and even the skin.  We were always concerned with the questions from doctors regarding pain in his face, differences in his vision, and the full body inspections looking for fungal infection on the skin.  Todd decided to Google photos of invasive fugal infections and here are a few of the photos he found on what they can do.  TODD DOES NOT HAVE AN INVASIVE FUNGAL INFECTION LIKE THESE PHOTOS!  His was caught very early.  This is what they can do:

Invasive Fungus Sinusitis: Medscape 2000

Fungal Infection in Eye/Orbital

Mukherjee, B., Raichura, N., Alam, M. 2016.

Fungal Skin infection (mild): No JH, Yu JS, Kim EO, et al. 2010

Todd's fungal infection started in his sinus as a sinusitis, but then dropped into his lungs.  Fungal pneumonia shows up in a unique way in lung x-rays and scans by exhibiting itself in nodules. It is treated though in the same ways. 

You can understand the doctors concerns with fungal infections and treating them quickly and thoroughly!  Todd is very fortunate that his was caught extremely early! 

Besides antifungal medications, the doctors have seen some success with hyperbaric treatments.  I will explore this treatment in the next blog post.

References: 

Amphotercin B, 2016. Wikipedia.  Web.  Retrieved from:

https://en.wikipedia.org/wiki/Amphotericin_B

Bhatt, V., Viola, G, and Ferrajoli, A.  Ther Adv Hematol. 2011 Aug; 2(4): 231–247. doi: 10.1177/2040620711410098 Web. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573411/

Chen, M., Houbraken, J., Pan, W., et. al. BMC Infectious Diseases 201313:496

DOI: 10.1186/1471-2334-13-496. Web. Retrieved from: http://bmcinfectdis.biomedcentral.com/articles/10.1186/1471-2334-13-496

Medscape General Medicine. 2000;2(1) "Fungal Sinusitis." Web.  Retrieved from: http://www.medscape.com/viewarticle/408751_2

Mukherjee B, Raichura ND, Alam MS. Fungal infections of the orbit. Indian J Ophthalmol. [serial online] 2016 [cited 2016 Nov 27];64:337-45. Retrieved from: http://www.ijo.in/text.asp?2016/64/5/337/185588

No JH, Yu JS, Kim EO, Choi HH, Kim SH, Kwon JC, Lee DG, Choi SM, Park SH, Choi JH, Yoo JH, Kim HJ, Min WS.   A Case of Disseminated Aspergillosis Presenting Solely as Multiple Cutaneous Lesions in an Acute Leukemia Patient.   Infect Chemother. 2010 Aug;42(4):244-248.   https://doi.org/10.3947/ic.2010.42.4.244

TODD ADMITTED BACK TO HOSPITAL AFTER KIDS ARRIVAL TO HOUSTON

Group Picture: Picking up Ellie and Lewis at Hobby Airport, Houston

On Saturday, November 5, 2016, Todd woke up with a fever at the hotel!  We were planning on picking up two of our children from the airport for a weekend visit.  I started to take him to the emergency room, but after an hour, it went down.  He insisted on going to the airport with me anyway, but he felt so poorly that I had to wheel him in with his mask on.  The kids arrived and we were so happy!  We got a quick bite to eat, but Todd didn't feel like eating.  I was still concerned and make him pull the thermometer out of his jacket pocket to take his temperature.  He got sweaty and the fever seemed to break for good.  I took him back to the hotel while I took Ellie to the store.  When I got back, I noticed right away that his cheeks were red.  I asked if he was running a fever and he said yes.  I had already packed a suitcase for him earlier that morning and had it in the car just in case.  So we hugged the kids and were off to the ER.

Of course, they got him into a room and said that they were planning on admitting him.  They worked quickly to try to find the source of the fever: blood cultures, chest x-ray, urinalysis, etc.  When the doctor came in I told him I had been concerned that he had 0 platelets, which worried me about bleeding in the brain, or that he had an abscessed tooth from one of those cavities in his wisdom teeth.  He asked if Todd has had a scan of his head since we arrived or even recently, and I said NO!
So he decided to do a CT of the head. 

Sure enough, it was the CT scan of his head that showed a sinusitis infection in his right sinus.  This was not what I expected, or what they were looking for, but I guess it was a good thing that they did it.   The chest x-ray looked ok at this time.  After they got Todd into a room on the Leukemia Floor, I stayed until after 10 p.m. and drove back to the hotel to stay with the kids.  Of course, he needed blood and platelet transfusions too.  Luckily, I had called Todd's cousin Denise who lives in nearby League City earlier in the day asking her to help with the kids if I needed to take Todd to the hospital.  So, she was ready to come get them and take them to dinner.  It was the first time that they met, but they immediately hit it off with Denise and her two adult children Seth and Emily.  I was so grateful!

The next morning, I took the kids to breakfast and we went out to the hospital to sit with Todd. He was doing better.  The fever was down, but they wanted to do a nasal wash to test for the flu along with a second CT with contrast of the right head/sinus along with the upper chest to get a better look. I knew they were calling in a head and neck surgeon and an infectious disease team, but I didn't think they would do much else.  I wanted to spend some "fun time" with the kids, so I took them to the Galleria Mall to look around and get dinner.  I texted Todd and checked on him several times to see if he wanted me to bring him food, but he said nothing about what happened while we were gone.  We walked into the room and noticed dry blood all over the front of his shirt and cotton gauze stuffed up his right nostril!

While we were gone, they sent in a Head and Neck Surgeon to take a look at the sinus fearing a fungal infection; and without any warning or pre-medication, he stuffed a large scissors-like tool up his right nostril to biopsy the sinus infection!  Todd said it was the most painful thing he has ever gone through! After the biopsy, he got up to go to the bathroom, when he had a gushing nosebleed!  The surgeon had to come back in and placing packing up his nostril to stop the bleeding. I felt so bad that I wasn't there; but he said there was nothing I could have done (except insist they give him something for the pain!).  The only good thing the surgeon did do was walk down the biopsy to the lab himself so we could get the results right away.

Todd was very congested after this and having some post-nasal drip after the procedure.  He had been pretty upset at the whole experience and had no appetite.  Before me and kids left to go back to the hotel, the results came back that the biopsy showed a fungal infection!  I really didn't fully understand what made a fungal infection so horrible or what they would have to do to treat it.  The team of doctors immediately wanted to schedule an MRI to get even a better look!  Our first worry was that they would want to surgically remove the infection, but with Todd's platelets so low, we doubted that this was a real option. We learned that a fungal infection can travel to other places like the brain and the eye where it can be extremely dangerous!  We left him in his room about an hour after visiting hours, because the kids were going home the next day and were anxious to spend more time with him.  I had also decided to check-out of our hotel room two nights early.  Since the kids were going home on Monday afternoon, I didn't want to waste resources staying two more nights by myself.  I could just pack a bag and plan on staying with Todd in his hospital room.  I knew this meant staying up all night packing up the hotel room!

I found out the following morning that they had taken him down for the MRI around 1:00 a.m. on Monday morning, November 7, 2016.  Life here for Todd was getting more complicated by the day. After a quick hotel breakfast, I started loading up the car with our things and we all headed out to the hospital to see Todd.  When we arrived, we learned that Todd not only had a fungal infection in his sinus but they also found nodules in his lungs, which are indicative of a fungal infection. They doctors said it isn't uncommon for the fungal infection to drop from the sinus into the lungs.

The doctors continued to treat him with anti fungal IV medication but they want to try giving him white blood cell transfusions to help fight the infections. Todd still has zero white cells to fight it.  They sent a representative in from the blood bank to discuss the process of donating white cells.  We learned that there is no storage bank for white cells since they have no shelf life; they have to be donated and given to him within 24 hours. Unlike transfusing red cells, they don't care about matching the donor cells to the patient, but it is a multi-day process for a donor to get screened and to have their white cells harvested  It is very hard to find donors for this reason and usually only family and close friends are willing to go through such a rigorous process.  I will be going as soon as possible to start the screening process! They really like multiple donors but since we are not local it just might be me only who can donate on a limited basis. We knew that we couldn't ask our own friends and family so far away in Ohio.  Instead, we would have to rely on what family we had here and if we could get the word out to people who had friends and family here that would be willing to help.

I had already planned for Todd's cousin Denise to take the kids to the airport on Monday afternoon, November 7, because Todd originally had out-patient appointments and bone marrow biopsy already scheduled during that time at the hospital. Even though those appointments were now cancelled and Todd had been admitted to the hospital, I didn't want to leave him after I wasn't there during the traumatic biopsy!  The kids, Denise, and her kids went downstairs and had a quick bite to eat.  Then I walked the kids out to the car to get their luggage.  It was hard to say goodbye, but the visit was so refreshing and we all felt better having been together (even though we were missing Abby). 

Large Flag hanging inside the Galleria Mall, along with a view of the ice skating rink and shops.

And just like our time together is gone...

Little did we realize how long it would take to fight this fungal infection.  It was just beginning. 

CHEMOTHERAPY REVIEW WITH DR. BENTON: 21 DAYS POST CIA TREATMENT

Friday, November 4, 2016: MD Anderson Hospital Outpatient

Today, after his routine outpatient labs and vitals, Todd was scheduled to see his Leukemia Doctor, Dr. Benton.  We had been anxiously awaiting his bone marrow aspirate results from Monday, October 31, 2016, but were also a little "freaked-out" to learn that his platelets had completely bottomed out at 0!!!!  The rest of his counts were not great either: whites went up to 0.10 and his hemoglobin was 7.8.

I started out by telling Dr. Benton this and asked if it was dangerous for Todd to be walking around with ZERO Platelets; Shouldn't he be admitted? His answer was no.  And that ZERO really wasn't much different from the 2,000 or 3,000 counts he has been experiencing this past week.  He obviously cautioned Todd to be careful not to fall, bump into anything, be involved in a car accident or something else, but that if he was careful, he would be ok.

We showed him Todd's hands, that had started peeling on the sides and the severe petechiae that had developed this past week all over Todd's legs and feet.  His calves actually looked bruised all over with the petechiae spots everywhere.  All of this, of course, was due to the low or non-existent platelets. 


We asked if he had the bone marrow aspirate results from Monday, October 31, 2016.  He said yes and it showed residual disease.  We both asked what was the blast count?  We were devastated when he said that the blasts were at 20%!!!  The tears just started flowing uncontrollably.  I was in shock.  Todd's counts were at 21% before he started he chemo regimen of DAC + CIA last month.  Dr. Benton said he was surprised too, and this may be a unfavorable sign that a second transplant may not be successful.  He acknowledged that Todd's disease seems to be very resist to treatment.  He wasn't ready to give up yet though.  He preferred to wait one more week and see if the blasts would go down.  I asked "Is that possible?"  He said yes, the chemo can still be working and he has seen other cases where the blast counts went down significantly from 21 days post-chemo to 28 days post-chemo.  He wanted to give it one more week to work and then do a repeat bone marrow aspirate to see if the blasts go down.

"Bone marrow aspiration is the removal of a small amount of this tissue in liquid form for examination."  

"Bone marrow aspiration is not the same as bone marrow biopsy. A biopsy removes actual marrow for examination."  -Yi-Bin Chen, MD.

He was concerned though, that by this point, it was the disease causing Todd's poor blood counts, and not the chemo.  This was such hard news to swallow.  We didn't want to share it with anyone!  I didn't post an update online or tell the kids.  It was hard enough for us to digest; we didn't want to burden the kids since they already had enough to deal with regarding school/college. 

He asked if we had seen the kids or had they planned to visit yet, and we said that our youngest two were going to fly in for the weekend visit the next day.  We were all looking forward to the visit and I didn't want to dampen their spirits before they arrived by telling them this news before they left.

I have met wonderful lady through Facebook who messaged me to share her husband's experience at MD Anderson and offered some advice.  Her husband is about the same age as Todd, and has AML.  He was also treated with AG221 in the past, but didn't have the success Todd had with it.  He had a bone marrow transplant here and despite getting Graft versus Host disease, had success with the transplant 9-10 months out.  I remembered that he had two rounds of chemo induction, and asked her if it was because the first round didn't work as well.  She told me that her husband's blasts were high at 21 days post-chemo, but that they dropped significantly by the following week or day 28.    He even went to transplant with 8% blast cells!  So, all this gave me encouragement.  I am so grateful for others who have walked this path before us and are willing to share their experiences!  This is one of the main reasons I continue with this blog!

The next question, was what happens next?  What kind of treatment will be pursued if the counts do or don't go down?  Dr. Benton said he would recommend a second round of the same exact chemo regimen if the blast counts were to go down.  If they don't go down in a week, then he would scrap that regimen and look at something else.  He said he had some things in mind, but would start looking into it more.  He scheduled a second bone marrow aspirate for Monday, November 7, 2016. 

After the appointment, we went to the ATC to sit and wait (and wait) for his transfusions.  Instead of going to the main ATC on the 2nd floor of the main building, we were sent to the Mays Clinic ATC, which is quite a distance away.  We had to take the golf cart shuttle and wait for two or three hours before we were able to go back.  During our wait, we met another gentlemen who had Lymphoma.  He was telling us that MD Anderson has an entire floor for foreign sheiks, dignitaries, or other patients who come with cash to pay for their treatment.  He said he was on Medicare.  I was glad to hear that MD Anderson took Medicare, since Todd will have to go on it soon.  Unfortunately for him, he needs an allogeneic transplant (where he needs someone else's bone marrow), when most Lymphoma patients need an autologous bone marrow transplant (where they receive their own cells back after the intensive chemotherapy) and in this case, Medicare will NOT pay for the transplant.  He said he didn't want anyone suggesting a transplant anymore, when he knew he would never get it because he couldn't afford it.  I hate this!  It all comes down to insurance and money.  As always, in the cancer community, we exchanged support offering prayers and encouragement to each other before parting ways. 

We didn't get finished until about 9:00 p.m. that night.  Although we were tired and discouraged, we were also excited to see the kids the next afternoon.  Special thanks goes to Alan and Tiffany Page for using their frequent flyer miles to purchase round trip airfare for Hannah Lewis and Ellie to come to Houston.  Abby, had teacher training and college work and couldn't get away, but we expect to see her when she comes to screen as the bone marrow donor. 

Other thanks goes to my parents, Darrell and Donna Norrod, who have given sacrificially to help the kids and keep up our house and cars in our absence.  Also, to our wonderful neighbors, Dan and Sharon Murray for mowing our grass back at home! 

We also are grateful to friends, families, and even the strangers who have donated to Todd's Go Fund Me Fund, dropped off checks and mailed gift cards.  We are blown away by everyone's generosity.  Todd feels relieved to know we have the funds to pay our expenses here and the medical bills still pouring in.  Our deepest thanks and love goes out to everyone!


References:
Chen, Yi-Bin, MD.  1997-2016. Medline Plus.  Bone Marrow Aspirate. Web.  Retrieved from: https://medlineplus.gov/ency/article/003658.htm

Outpatient Appointments with Dentist and Supportive Care Team

Thursday, November 3, 2016: Outpatient appointments at MD Anderson, Houston, TX

Two appointments. One discouraging and one encouraging. The dentist appointment was supposed to be to receive dental clearance for the transplant. Unfortunately the dentist found that Todd's wisdom teeth need to come out or he needs to have two root canals prior to the bone marrow transplant. We knew this and tried to get them taken out in the summer but his platelets started declining after we waited the 6 months for the insurance to cover it. His platelets are still way too low to do any procedures!  I can't see them going up anytime soon. So all the doctors are going to talk and get a game plan together. In the meantime they are giving him headaches and jaw pain.

The second appointment was with the "Supportive Care" team. They will now be in charge of his symptom management: pain, physical therapy, fatigue, and nausea. The doctor was able to give him some medicine to stimulate his appetite called Reglan or Metoclopramide. So I'm hoping this will help with his cachexia and catabolic wasting. We spoke with a counselor and he is going to check in with me from time to time to see how I am coping.  The doctor thought it was best to keep Todd on a low-dose pain medication around the clock instead of just taking something fast-acting that won't last long.  This also means he will need to be on Senna-S to counteract the pain medications causing constipation. 


Cachexia ad Catabolic Wasting:  http://www.lifeextension.com/Protocols/Health-Concerns/Catabolic-Wasting/Page-01

Medication prescribed to increase appetite. 
https://en.m.wikipedia.org/wiki/Metoclopramide

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