Wednesday was collection day. Donor Nicole and her husband, Scott, were at
the Gift of Life Marrow Registry headquarters in Boca Raton Florida for the occasion. They’d flown in early to enjoy some time with
Scott’s family in the area and to have a nice beach get-away.
During a 7-hour process, Nicole’s entire blood volume was circulated
through a machine twice (!) to collect lymphocytes for Jeff. Both of her arms were occupied so she
binge-watched a TV series. Scott was
kind enough to post pictures on FB – Nicole hooked up to the machine, a wall of
pictures of Nicole during her marrow donation 10 years ago and of she and Jeff at
the Steps for Life Walk/Run where they first met, and Nicole watching the video
that we were asked to prepare for her. The
tears in her eyes as she watched our video sparked many of us up north to shed
a few tears ourselves. The last photo Scott
posted was Nicole holding the bag of T Cells and modeling her new Gift of Life
Donor T-shirt. (“I know you did it for
the swag”, I later teased her. She
replied, “and the trip to the beach!”)
Meanwhile in Pennsylvania, I was working. I should have taken the day off because my
mind’s ability to concentrate was impaired by my excitement and anticipation (a
la Christmas Eve my entire life) and Jeff, I think, wanted company while our
phones kept dinging with well wishes from family and friends. Jeff’s Home Infusion
nurse came to change the dressing on his PICC line and to draw blood. She joined in our excitement and indulged
Jeff as he proudly showed her the pictures Scott had posted on FB. And we got a phone call from the transplant
coordinator at Penn to tell us that his infusion appointment had been changed
from 8:30 to 11 and a 9 a.m. lab appointment was added so they could type and
cross his blood. We knew that would add
hours to the day. So be it. And we watched weather reports and contemplated
staying at Daughter Kim’s place in the city overnight. In the end we did not. Only 1” of snow was predicted. The main roads would be fine.
A Gift of Life staffer told Nicole the cells would be sent
via courier to Philadelphia. We figured the
later appointment would allow for potential weather-related flight delays. Maybe everything would come together as planned.
On Thursday we arrived early at Penn’s Perelman Center. We didn’t have any problems getting into the
city despite the weather reporters stressing “allow extra time”. We ate our breakfast
in the car before Jeff went to his lab appointment. They were able to take him early so that he
was finished with his 9 a.m. appointment before 9 a.m. We waited an hour in the Perelman Center’s
public area until Jeff, eager to get things going, suggested we walk over the
bridge to the hospital and wait for his 11 a.m. appointment in their waiting
room. On the bridge, we followed a woman
in a lab coat carrying a red and white cooler.
Jeff said, “That could be my cells or that could be her lunch.” We were tempted to ask.
The hospital lifted some COVID-19 restrictions
and this was only the second day they allowed companions in the Apheresis and
Infusion Center. The staff at the reception desk all looked up from their work
and smiled at us. I wondered whether they knew it was Jeff’s special day. Despite arriving one hour early, we hadn’t even settled into
chairs in the waiting room before Jeff was called and we were shown to a room. Nurse Dana said the infusion would begin at noon at the
earliest because of the time-consuming type and match that had to be done on
Jeff’s blood and Nicole’s T cells. I asked if they would prefer if we came back later. She assured me the room was ours for the day. Jeff watched TV and I read a book. We also exchanged texts with Nicole (I believe she may have
been a little anxious about all this, too) and family (ditto).
I asked Nurse Dana a question that had occurred to us. Previously, when Jeff’s blood and donor blood
were checked for antibodies, we thought if there was a problem the lab would
simply go to a shelf of blood products and test a different donor for matching
antibodies. In this case, what would
they do if there was a mis-match with Nicole’s?
Today she is Jeff’s one-and-only.
Dana said she wasn’t sure how to answer the question and she would have a
pathologist come to explain it. Well, we
got an education from a very nice, very animated Penn professor.
The upshot is, should there be a problem, they would know to watch for a
reaction. They’d
administered Tylenol and Benydryl, I believe as standard procedure. When the lab was within one hour of completing
their work, they alerted Dana so she could begin giving fluids. An hour of fluids, almost an hour for infusing
T cells (slow rate and large volume - three times the usual amount for some
reason), another hour of fluids. Jeff
slept through most of this. 4 p.m. Done.
Jeff felt no different.
He felt well enough to watch our youngest granddaughter on Friday. On Saturday we did nothing. N.O.T.H.I.N.G.
Lab results from Wednesday’s at-home, pre-DLI blood draw were
posted to Penn’s portal. WBC much
improved, 3.1! Hg 10.3! Platelets 98,000! All heading towards normal! Nurse Heather had told us that the biopsy
showed 96% of his marrow is Nicole’s (pre-chemo it was 76%). It seems like Nicole’s T cells only have a
little bit more work to do, chomp the remaining cancer cells.
Jeff to Nicole: I
hope your cells are hungry.
Nicole to Jeff: They
are!
Jeff theorizes that his body already recognizes Nicole’s
cells and that GVHD may not become a problem for him. Nurse Heather says they really don’t have any
idea because Jeff’s situation is rare: ten-year
bone marrow transplant survivor, subsequent DLI infusion, marrow and T cells
from the same donor…
Strange: Jeff is
suffering from Mask-ne, blemishes on his face in the mask area. At least that is what Dr. Amy thinks it is. It is quite persistent in two spots. Jeff says if it had happened after DLI he might
have suspected GVHD of the skin.
Stranger yet: A week
after finishing treatment (hopefully forever) ads for Venclexta began popping
up on Jeff’s FB feed. Really? Are you supposed to ask your doctor if this
medication is right for you? Well, Genentech,
impressive/creepy ad-targeting but you are a little late to the party.
Many, many thanks to everyone who has been praying for Jeff,
sending messages of love, and supporting Nicole’s birthday fundraiser for Gift
of Life. We enjoyed reading the messages
Nicole’s family and friends posted on FB in support of her wonderful-ness and
appreciate their prayers as well. We are
feeling the love! XOXO
Happy Valentine’s Day!
