The transplant

A brief update on Teri

2/16/11

It happened!

Teri received her double stem cell transplant yesterday:

1)   umbilical cord stem cells 3:15-4:00 pm

2)   Ben’s stem cells (T cell and red cell depleted) 7:45-8:15 pm

Each processed unit was 55 cc’s (2 oz).  This is the first such combined transplant performed here at the Medical College of Wisconsin.

It was uneventful and less dramatic that one envisioned like a mini-transfusion.

Teri is receiving her anti-rejection drugs around the clock.

Teri is not feeling well at the moment.  She is suffering from nausea resulting from the total body irradiation mostly and the chemotherapy partly.

Teri was especially touched by Sandy orchestrating the signing of a set of pink scrub suits with “Kick Butt” and signatures and well wishes from all immediate family including baby Jack, close friends in Columbus, nurses from 4TN and the BMT unit, and staff from my division.  The thoughtfulness and support brought her to tears.

Please send your thoughts and prayers to Teri as she continues on this difficult phase of her journey.

The insurance roller coaster -- the debt defying plunge

2/13/11

Everything is calculated around day 0 = Tuesday February 15^th.  Teri was admitted on day -7 = Tuesday February 8^th for blood work and cultures, to begin conditioning myeloablative therapy (to destroy her own marrow, including leukemic cells, and stem cells).  In our garden parlance, both the flowers (good cells) and the weeds (leukemic cells) are wiped out in preparation for receiving new seeds (stem cells) from Ben that will produce temporary blossoms (white cells to fight infection), then another set of new seeds from a reasonably matched umbilical cord that will produce the permanent perennial red, white, and platelet flowers.

But oh, the disappointment, frustration and anger we experienced trying to get admitted.  An extreme insurance and hospital hard-line saga.  A roller coaster with unbelievable drops.

We were told that because the combined haploidentical(Ben)/umbilical cord transplant was denied twice by Principal Insurance, we would have to be admitted as self-pay.  Then came the real surprise.  At 1 pm Monday, merely 20 hours before the scheduled admission, we were told by the transplant liaison that although we would be entitled to a deep discount as a MCW employee, the hospital required that we bring 102K to the admission.  We argued that this amount and timetable was unreasonable, but they would not budge.  Furthermore, they had instructed the clerks not to permit us to be admitted if we did not bring the money.  Imagine being treated like … the message.

We met that evening with the Dean and Director of Human Resources.  The Dean said we would have to go through the insurance review process but promised to help in some way, even considering faculty fund raisers (for something insurance should cover?). 

We scrambled … financial counselor, banker, loan officer, father … and fell short.  The very last thing that Teri needed to worry about before the big event.   Disillusioned, sleepless, frustrated.  Can you believe it?

The next morning, the hard line in the sand had softened, and they would accept partial payment, and the rest by Friday. 

Teri was admitted to the bone marrow transplant unit Room 5.  It is adjacent to where Teri used to be.  Her room faces B’s office.  He has to squint really hard to read the window messages to him.  She began receiving chemotherapy and anti-rejection drugs on Tuesday.  She will get total body irradiation on day -1 Monday 14^th.  This is part of the protocol to kill as much cancer cells in her body.     

On Friday evening, three days after admission, after the transplant specialists have again hammered away at the Principal’s medical directors, we received belated word that they have approved part of the transplant … in compartmentalized thinking, they will pay for the umbilical cord portion but not the haploidentical portion including Ben’s pheresis removal, the storage, and infusion.  This is a combined transplant, but they want to split hairs so-to-speak or transplants here …  At least our out of pocket costs will not be full value.

Still, they have not approved her autologous (self) stem cell boost that saved her life in November. 

It’s a mad, mad, mad, mad health insurance world.

Ben is here giving himself GCSF to stimulate his bone marrow.  His bones ache.  Today, he got his stem cells removed over five hours, though unfortunately, his lines kept clotting off and needed restarting.  The freeze the cells overnight and infuse them into Teri tomorrow day 0 Tuesday. They want to infuse 3 million stem cells into Teri followed by the umbilical cord blood.  Then we will wait 2-3 weeks for Ben’s stem cells to produce white cells to help Teri fight infections and then several more weeks for the cord stem cells to completely repopulate Teri’s marrow and grow all of the necessary white, red and platelet (clotting) cells.  If all goes well with no fevers/infections Teri may go home in by mid March.

­Teri:  Possibly the most interesting thing to come out of this haplo-identical and umbilical cord transplant is for Teri to grow 3 inches and look upon the world with brand new baby eyes.

If you have any questions about this complex transplant, ask.  I think it’s fascinating, innovative and a Leap of Faith.  I believe in miracles.  I need all of my family and friends to join hands with me in your mind and imagine me cancer free when you get this message. 

With all my love and gratitude.  Teri

Preparing for the transplant & an insurance vortex

2/6/11 -- Life is good

Teri feels good … in remission

Teri’s bone marrow was clear on January 14^th .  It does not mean that all the cancer cells are gone but they are likely below the level of detectability.  Most importantly, it means that we can proceed with a definitive bone marrow transplant in hope of a cure.  If the biopsy were positive, we could only proceed with palliative care.

We are nearly at the one year anniversary – February 10^th – of the diagnosis of leukemia. 

Teri feels good right now.  Her personality, her spirit, her energy have returned.  She is still underweight with the aftereffects of chemotherapy.  Our home pulses with life, energy, warmth, music, her aesthetic touch – and partnership of doing things together – that I had sorely missed for nearly 3 months.

Off antibiotics and IV fluids and blood products for first time in 111 days – the PICC line was removed on Jan 24^th. 

Teri has done some things for the first time in a year:

1^st dinner party where friends did most of the cooking

1^st road trip to Columbus

1^st eating out in Chinatown, Chicago – something we used to do frequently

1^st movie outing

1^st ballroom dance lesson – on her bucket list

The big event was our trip to Columbus (home of 15 years) to see grandson Jack.  We watched him for hours and witnessed his first roll over.  Little Jack watches everyone and everything (TV, books and mobiles) intensively.  He smiles at the prompting of “little champ” and “little bun”.  He ‘reads’ intently with us.  He changes daily.  Teri couldn’t get enough of odor de babee.  John and Rachel are great parents and enjoy his every little nuance.  They have names for his activities – tummy time, sleeping in the fort (pillows), doing the Riverdance – you can visualize.  They have the latest musical/massaging/rocking swing and swaddling blanket.  We also saw our gourmet club, Teri’s Asian Womyn’s group that she helped start and Columbus International Program friends that we hosted.

Teri is preparing, cleaning, sorting, organizing, donating, dumping and teaching me more about the folder location, fiscal aspects, Dad’s care … preparing for the worst.

The transplant

The chance of relapse stands close to 100%.  The last time it happened within 5 months of remission.  We are already at the 2 month mark. Dr. H. doesn’t want to wait.

In the hope of potential cure for AML, bone marrow (stem cell) transplant is the best option.  When one doesn’t have a related matched donor (sibling or parent), or unrelated … one has to go to mismatched or alternative transplant route. 

On the recommendation of the oncology team Teri will undergo the following protocol (therapy).  She will receive a haploidentical transplant from son Ben and a partly matched (4/6) umbilical cord from an unknown donor. This combination will give her the best chance of survival.

 

1.    2/8 Teri will be admitted to the Bone Marrow Transplant (BMT) ward and get a PICC line placed. 

2.    2/9 Teri will receive 2 kinds of chemo drugs for 4/5 days.  She will also receive other drugs to help prevent graft vs host disease.

3.    2/14 Teri will receive total body radiation to kill the cancer cells and stem cells.

4.    2/14 Ben will have his stem cells removed at the Cancer Center here.

5.    2/15 Ben’s stem cells will be infused into Teri.  His stem cells will grow first in Teri’s bone marrow to provide the all important neutrophils to fight infections like VRE that she contracted in November.

6.    2/15 or 2/16 the umbilical cord stem cells will be infused into Teri. These new cord cells should eventually reconstitute Teri’s bone marrow from Ben’s cells and produce the entire complement of white cells, platelets and red cells.

7.    Teri will be hospitalized for up a month.  

What is the outcome?  Teri has a 1/3^rd chance of mortality from the bone marrow (mostly from infection), 1/3^rd chance of survival but relapse of leukemia, and 1/3^rd chance of cancer-free survival or cure.  I’m so used to looking this as cost-benefit preferably low and high respectively, but in this case it is reversed, high and low.  It is daunting to consider.  Besides opportunistic (common bugs that affect immune compromised patients) and superbug infections, she can get graft-vs.-host disease in which the transplanted stem cells from Ben or the cord blood will attack Teri’s tissues. 

So what would you do?  If you had to have an elective surgery, with 1/3^rd risk of dying from the operation and 1/3^rd chance of cure, you wouldn’t ordinarily take those odds, as compared to an appendectomy with 3% risk and 97% cure rate.  But if it is your only chance …

As we mulled this over with our oncologist/BMT transplant expert, in the end, we had to throw out the numbers.  It essentially comes down to an all or none decision to go for broke or do nothing.  If one does nothing, it is 100% relapse rate and with each relapse, the leukemia becomes more resistant to treatment.  At the end of her last hospitalization in December, Teri’s body and spirit were so ravaged by the harrowing bout with the superbug that she said that she could not survive the transplant.  As she became rejuvenated by Jack and family and friends, her energy, fighting spirit and joie de vivre have returned.

Teri:  I am kicking butt again.  But not without ALL of you kicking butt too.  I still have everyone’s cards saved, hanging on the walls of our home, inspiring her.  If you’ve been here, it is quite amazing.  The latest is a collection of paper snowflakes from my sister’s class that hang from the ceiling turning gently in the air.  I am blessed with so many people who care of me and B as well.  I have been told that there is a good book called 20 Things People Who Have Cancer Want You To Know by Lori Hope – check it out. 

                                                                                                  

One thing for sure, Teri wants compassion, not pity or advice.   

Battle on the 3^rd front – insurance.

Six days ago, on her birthday, with all of the transplant wheels turning we received a call in Columbus from our oncologist, that the health insurance company had denied coverage for her planned transplant scheduled on 2/15/11.  Besides leukemia and the complications of neutropenia, we are fighting on a 3^rd front.

MCW is self-insured so that ironically it is our selves through an administrative company Principal Insurance that denied it.

What does it say when the cutting edge treatment of one of our MCW family (Teri) that is recommended by expert MCW physicians is denied coverage by our self-insured MCW program?  We don’t provide the best of care of our own family?  As all of my colleagues agree, it is an outrage.

We approached the interim Dean and the CEO of the Medical College. They are negotiating with the insurance co. but so far they have not budged.  They are classifying the transplant as experimental and nonstandard when in fact all mismatched transplants are governed by National Cancer Institute approved protocols.  The Wisconsin law states that insurance companies can’t refuse study based treatments.  Right now, we are proceeding into this as self-pay! 

Teri raises the question of what her life is worth.  The cost will be $700K to 1+ million.  Should we go to a lawyer, to the press?  It is the last thing we want to contend with as we attempt to enter this with a positive attitude. 

What a roller coaster we are on.

At last

Teri:  After what I survived last time, it will take more to take me down.  I am going back in with more resolve and determination to Kick Butt again.  Help me imagine that I will be infection free and not suffer from the side effects of the drugs.  Help us imagine that the transplant will be successful.  B’s dad has been having such dreams where I am cured.  I always tell him to continue to have those dreams.  He smiles.

Please send all your best wishes, Reiki and prayers to Teri as she embarks on her penultimate challenge.

A joyous holiday

1/9/11

Teri was released from the cancer gulag, shed her hospital garb for the first time in 80 days, and returned to her own abode on Thursday 12/16.  She was 10 lbs lighter, constantly nauseated, completely lacking in energy, sleeping much of the day, unable to react to even positive news … a shell of her former self.

In tandem, on Monday 12/20, baby Jack arrived while she was still getting a transfusion at the cancer day hospital and several medications that potentially were causing significant side effects were stopped.

Baby Jack was like a shot of infant adrenaline, a drink of baby red bull, that began to resuscitate her … and within 48 hours she began to regain her persona, her animus, her joie de vivre, her self.

Snuggling, holding, rocking, calming, changing, bathing, putting to sleep, napping with, kissing and sniffing.

Ben came and became a tiger’s uncle.  Greatgrandpa was thrilled.

Our life began to assume a baby’s rhythm … feeding, burping, changing, napping, sleeping.  Grandma Teri and grandpa B were able to give John & Rachel respite to go to the health club.  There J & R introduced Ben and I to spinning and we survived our first exhaustive aerobic circulating experience. 

Our life centered on new life and rejuvenated life, Jack and Teri.

Even though no preparations had been able to be made for Christmas in Milwaukee, with Rachel & John’s help, a small artificial tree and presents appeared almost magically. 

Our X-mas was joyous, poignant, laden with love, spoken and unspoken.  Great food, John’s pot roast for X-mas, family stories, games and Jack filled our days.

                                                                                         

Our life has temporarily resumed some normal routines, excepting the IV antibiotics 3 times a day, with Teri venturing out in public, talking to neighbors, talking on the phone, organizing her desk and her kitchen (with sister Terri from California, and even cooking a few dinners.

It is amazing to see the Teri I have known reemerge after three months.

May 2011 look up for all of us.

B

Turning point

12/11/10 

Day 75 in hospital (Admitted 9/28) – 2-3” of snow, down to 13°, definitely winter

Teri is alive, improved, but weak, nauseated and underweight.  The past three weeks have been the most trying of her whole illness.

What happened medically?

Because she only had 100 total white cells (normal > 3,500) for two months since her 7^th (and through her 8^th round of chemotherapy), she was essentially completely susceptible to any common, rare or serious infection.  Unfortunately Teri took on a multiple infectious hits including a superbug – a highly antibiotic resistant bacteria.

First, she developed fevers beginning on 11/11 and, with them, bed rattling rigors.  Altogether she had 3 weeks of continuously positive daily blood cultures with the superbug VRE.  This was not a good thing.  It meant that the double antibiotics daptomycin and gentamicin used for synergy were unable to clear the infection.  This happens because you still need your white cells to work in concern with antibiotics.  They thought the infection originated from endocarditis with the bacteria attached to her mitral valve in the left chamber of her heart – they are not so sure.  They placed and removed two PICC lines threaded from her elbow into her heart thinking that each line had become superinfected by this superbug and had to be removed as a potential source.  They also placed and removed an internal jugular catheter in her right neck.  Finally, they placed IV lines in her arms even though she was running out of IV sites. They gave her two sets of donor white cells to try to stem the tide of her uncontrolled blood infection. They spoke about the possibility of transferring her to the ICU.  Finally, the stem cells from her autologous (self) transplant on the 11/8 began to produce neutrophils (bacteria killing white cells) on 11/27 and the tide began to turn in Teri’s direction, and the fevers came down and the rigors stopped.  Although she is much, much better, the infection is not completely gone and her cultures are still intermittently positive through 12/6.  This encounter with VRE infection was life threatening.

Second, from 11/4 – 11/13, a nodule in her upper right lung appeared to enlarge on CAT scan.  Based upon the subtleties of the appearance scrutinized by oncologists, head of infectious diseases, pulmonologists, head of chest radiology and cardiothoracic surgery, this was felt to be infectious probably fungal (Aspergillus vs. Mucormycosis) rather than VRE, nocardia (her lung and brain infection from June) or new tumor.  This lead to a whole uncomfortable multiteam discussion about how best to identify the bug whether via bronchoscopy (scope in the lungs), BAL (washing through scope in the lungs), VAT (scope through the chest into the lungs with chest tube placed), or thoracotomy (removal of piece, wedge or lobe of the lungs with chest tube placed).  In the end, even the cardiothoracic surgeon felt in Teri’s current demise, it was too risky to undertake the surgical approach as that might be the tipping point to downhill course.  In the end, it was felt that simply treating the most likely bug, Aspergillus, with antifungal agents was a safer path than going after surgically.  However, the amphotericin (nicknamed ampho’terrible’) used to treat it caused rigors and set Teri back again.  After several days, the use of four premedications together seemed to control these rigors.  She required oxygen for two weeks.  However, they switched to oral posaconazole and clarithromycin (for nocardia).  That night, she began to get intractable 24/7 nausea, and couldn’t function.  The lung nodule is remaining at about the same size, so it appears to be held in check by the current regimen.

Why did she recover?  Simply WBCs (white blood cells)!!!  Of course, antibiotics played a key role but antibiotics clearly can’t go it alone without WBCs.  And a great, medical team, that discusses and communicates with each other daily. And not to be dismissed are the prayers and positive thoughts that have been continuous.

How is Teri feeling?  How is B feeling?

At least “I’m not having pain” although constant 8-9/10 nausea maybe as bad if not worst.

Teri has been discouraged, tired, ravaged by these infections.  She can’t see the light at the end of the tunnel i.e. home.  At times she feels she can’t get a break … fever and rigors, rigors from medicines, central lines in and out, multiple venipunctures and IV placements, constant nausea, impending surgery … 

She has lost 18 lb.  Although 10 may be accumulated fluid 8 lbs of tissue weight is still too much off her slender frame.  The accumulated fluid may have led her to require 2 L nasal oxygen for two weeks.  But she is off it.  With the rigors, she lost control of her limbs.  She still has uncontrolled tremors in her right leg that may be exacerbated restless leg syndrome.

The 24/7 9 out of 10 (rating) severity nausea, probably from her oral antifungal or antibiotic, continues.  All my usual vomiting medication suggestions from cyclic vomiting syndrome did not work.  With Ativan, Reglan, Chinese medicine and acupuncture, it got down as low as 2 out of 10 but is back up to 6 out of 10 today.

She feels she gets no break.  It is one complication or debilitating symptom after another. 

From my perspective, the three most challenging symptoms to watch in a critically ill person include pain, fever and rigors and nausea.  Teri had two of them.  Watching these symptoms debilitate a loved one physically and destroy their spirit … from 3 feet away for up to 70 hours a week was wrenching both as Teri’s support person and as a physician – helpless in both roles.

Who visited, cooked, healed?

Our support system is amazing and has helped us immensely.  Teri constantly feels that the prayers, the thoughts, the cards, the e-mail, the calls, the Reike, the Chinese medicine, the caring nurses, the excellent doctors have kept her alive!  All her interactions in person have involved tears – tears of gratefulness that they travelled the distance to see her and perhaps tears of fear that this could be the last time they see each other.

Dina, the parent of former students from Chicago came with love from Ellie, Bryce and Clinton and brought delicacies from Chinatown that my father and I could eat.  Bobbie another Chicago friend drove to give her love and support.

Tony and Elena local friends are making food to build up her strength.  Kok Peng, Anna and Memee made rice noodles and rice congee – comfort foods – and brought them from Madison.  Lois and Suzanne brought curry and pork buns all the way from NY Chinatown.  Steve, Mary and Becca from Madison brought her Vietnamese bun (rice vermicelli salad) her favorite that was her first food from a restaurant in more than two months – since she had been on a neutropenic (no fresh vegetables …)!! From B’s dad’s urging, he asked his nephews wife Xiao Mei a Chinese doctor to fly in from NY to do diagnostic thermal texture mapping and meridian energy analysis followed by therapeutic Chinese medicine, acupuncture and qi massage to help her with nausea – it helped.  From our building, Sandy has provided knitting projects as well as homemade spaghetti and chicken noodle soup, Natalie DVDs of romantic comedies.  Sandy with the help of others are organizing another bone marrow drive at a Vietnamese supermarket. Nancy and some of the other Asian medical students are going to take turns bringing food.  All of it helps tremendously.  Teri realizes that not everyone can come to visit but knowing that they care is enough …

What really happened this past three weeks?

We can talk about it now, that she is better.  But two to three weeks as the unrelenting rigors racked her frame, her primary oncologist called me from his vacation in the Caribbean and said she was ‘critical’ and that the next week or two she would either survive or not survive the VRE infection, partly dependent on whether her stem cells began to produce neutrophils.  He asked that I put our kids on alert and let them know that they might have to travel here on short notice.  At that time, many many difficult gut wrenching thoughts ran through my mind, foremost of which was that she was not going to be able to come to her beautiful home that she put so much of herself into.

BUT, SHE IS GOING TO COME HOME FOR CHRISTMAS AND BE WITH HER FAMILY AND ESPECIALLY BABY JACK!

Hospital day 62 -- some good news, finally

11/28/10

The bad and good news

Teri’s daily blood cultures remain positive for the superbug vancomycin-resistant enterococcus, meaning it is still circulating in her blood. The source is still suspected to be from endocarditis (heart infection).  But, her temperature curve is down, and the rigors have gone.  Today, her white blood count has moved from 100 to 800 (normal > 4000)!  Because the stopgap donated WBCs given on the 24^th & 25^th only last 48 hours, this means that her stem cells from the autologous (self) transplant are producing cells!  This means she is now fighting the VRE and the lung fungal infection with both hands and has a chance.  She still has a long way to go.

Thanks to all of you

Teri wants to thank each and every one for your thoughts and prayers.  She feels that they have made a critical difference.  Her energy level now is so low from the combination of life threatening infections, two months of no WBCs, lack of proper nutrition, lack of adequate sleep, and daily travails and setbacks that she says she can no longer ‘kick butt’ and must rely on all of your and my help.

Thanks to the doctors and nurses

Teri wants to thank all the doctors (H, B, B, G, F) and 4TN oncology nurses who have been working incredibly hard on her behalf.  Some examples.  Her nurse gave her a family heirloom in honor of grandbaby Jack.  Her primary oncologist called us while on vacation in the Caribbean.  Her infectious disease specialist took me out to lunch to support me.

Baby Jack keeps Teri going

Seeing baby Jack by Skype is the highlight of Teri’s day.  He is growing, developing and changing so quickly and seems to respond to her voice.  Teri has always wanted to be a Montessori grandmother and it’s been realized! 

Nourishing us from afar

Teri has lost some of her usually good (even on chemotherapy) appetite and has hospital-food fatigue.  These past couple of weeks, she has been fortunate to have special goodies (e.g. zhong zi – wrapped sticky rice) made or brought by friends in Milwaukee, Madison, Chicago, Columbus, and New York.  Thank you.

Teri’s appearance

Teri wants you to know how her appearance has been altered.  She is bald.  A blotchy total body red rash has become superimposed over darkened skin and nails that are now fully desquamating.  She is swollen with about 10 lbs of extra fluid.  Her legs tremor even when she is not in rigors (shaking chills).  She is intermittently itchy from the many blood products she receives.  She has her 6^th central line placed in left side of her neck (internal jugular).  She is tethered to one or two IV infusions simultaneously that include variously fluid, electrolytes, multiple antibiotics, an antifungal, sedatives, steroids, antihistamines, red cells, platelets and white cells.  She receives oxygen by nasal cannula.  Her energy level is very low.  She cries easily.  Between overpowering emotions and oxygen need, it is sometimes difficult to talk.  Yet, her eyes are clear and spirit evident ...  

B’s Mantra written @ 4 am

Teri is a living, breathing, vibrant, beautiful human being, still …

Teri and I have raised two great kids, now adults, now parents …

Teri and I have had an incredible 38 year partnership, now challenging …

Teri’s world is so constricted to one isolation room, yet she thinks of others …

What does Teri see?

Teri’s bodily shell is so ravaged, yet she stays resolved …

What does Teri feel?

Teri’s priorities remains so clear, she knows what she wants …

What would Teri do?

Teri and I are fortunate to have remained in love.  Teri and I affirm it in daily.  Teri and I are closer than ever …

More fever, more changes

11/19-23/10

Over this past weekend, despite 4 IV antibiotics Teri has had about 15 fever spikes over Friday to Monday.  When she becomes feverish, she has rigors (shaking chills) where the whole bed shakes as if a subway is rumbling past her NY apartment in childhood.  As she tries to feed, the spoon moves to and fro past her mouth.  With each fever, she gets additional blood cultures, sometimes a chest x-ray and urine culture.  With the fever, she shakes, moans, she whimpers, she cries, not in pain, but in profound discomfort.  It is difficult to watch her suffer with these uncontrollable rigors. 

The persistence of the infection despite full court press antibiotic (+ antifungal + antiviral) regimen is all disconcerting and discouraging and becoming desperate. 

It all begins with her persistent neutropenia (no bacteria-fighting white cells) now for > 2 months, a dangerous duration.  She is fighting a serious superbug vancomycin-resistant enterococcus (VRE) that is resistant to many antibiotics.  That is, she fighting with one hand (antibiotics) while the other is tied behind her back (neutrophils).  Her cultures still remain positive for the vancomycin-resistant enterococcus (VRE).

She wants so to go home!  She is discouraged.

Monday November 22 was an eventful day.  She underwent a platelet transfusion, a CAT scan, had her PICC line pulled (to remove it as a potential source of infection), and had a new jugular line inserted (her right neck) and had her IV stopped finally because she has retained some 9 lbs of fluid. 

The roller coaster of emotional highs and lows continues. 

Because no one is certain what is causing the persistent fevers, she was seen by several new consultants – infectious disease, pulmonary, and cardiothoracic surgery.  Unfortunately, the lung CAT scan revealed an enlarging nodule in her right upper lung that had doubled in size over 9 days.  The guess was that this was a new fungal infection, possibly aspergillus.  The pulmonologists first recommended a bronchoscopy with biopsy but felt the nodule was too distant from the airway and then they suggested bronchoalveolar lavage (BAL) – a lung rinsing process.  But the yield of a diagnosis was admittedly was low.  The cardiothoracic (CT) team were then asked to obtain a surgical biopsy by video-assisted thoracotomy (VAT), akin to laparoscopy but in the chest, that would leave her with a temporary chest tube.  She was scheduled for surgery as an add-on (after scheduled cases) today the 23^rd!  We were concerned about the risk to Teri who has no clotting ability (but would be transfused with platelets) and no infection fighting ability

After further review of Teri’s CAT scan, the CT surgical team felt that the lesion could not be easily reached by their surgical scope and would require a wedge (as in pie) resection or lobectomy (whole lobe removed).  But, these latter two procedures fall into a much higher risk category. By this morning, after much four-team deliberation and conferencing, the surgery was placed on hold!

The infectious disease consultants decided to alter her antibiotic regimen to a higher dose of daptomycin and begin an alternate old antifungal amphotericin, which we used to nickname ampho’terrible’.  Unfortunately, Teri had a terrible time with the amphotericin, rigors, inability to walk, and feeling her body was on fire.  It was a rough night.  Overall, we are much happier with the current plan of seeing how the new antibiotics are working, rather than the surgical path. 

Today, she is receiving white cell transfusion from an identified donor as a bridge.  She also received a high dose of injected Neupogen to stimulate her stem cells to produce white cells.  

Unfortunately, this morning’s echocardiogram confirmed the suspected endocarditis, an infection that affects valves of the heart, a known complication of VRE.  Not good, but survivable.

Teri recognizes that communication has become difficult and at times awkward with many of you whom she loves so much.  What can one or what more can one say?  It seems important to try …  You can 9 am to 3 pm CST to say hello on her cell phone. 

Teri this week needs your potent prayers, cosmic comments, and real-time Reike, more than ever ...