Welcome to Kenna Coerper's Aplastic Anemia Page

TRANSPLANT STORY

August 31, 2005 - December 25, 2005

see the beginning of her story from March 2004-Sept 2004

see the 2nd round of her story from Sept 2004 - April 2005

See her "waiting for a donor" story from April 2005 - August 2005

See her "transplant" story from August 2005 - December 2005

See her "post transplant updates" from January 2006 to present

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Wednesday, August 31, 2005

Day -15


This morning I sat with Kenna on Carsyn's first day of first grade.  After
dropping her at school, the parents took some time for breakfast and errands
before Kenna and Adrienne checked into the hospital this afternoon. Today
she will receive platelets to prepare for the surgery tomorrow to insert a
Broviac catheter. On Friday, she will receive immune-boosters, and on
Saturday the chemotherapy is scheduled to begin.

Kenna's had some blood donors already, but no platelets available for her
yet at the CHOC donor center. They take 5 days to process, so she could use
O+ donors starting on Sept 9 and A+ donors before that date. Thanks so much.

Please call 714-532-8339 to schedule an appointment
CHOC Blood and Donor Services
Main & LaVeta, Orange
Monday, Tuesday, Wednesday and Friday  9am - 7pm
Thursday 7:30am - 7pm

The haircuts were accepted very graciously yesterday. Kenna's is a fluff of
curls.

Carsyn enjoyed her first day of school and likes her new teacher. This
evening I went over to the hospital while mom and dad went to back-to-school
night and tucked her in.

Kenna seems right at home in her new room and showed me around the floor and
the playroom while her freedom is not yet restricted. She's in ICU, so one
wall is all glass and looks right into the nurses' station. There is a short
curtain and it seems fairly quiet. Sure hope Adrienne can sleep.

Daily Counts
Date 08/31/05
WBC 2.9
RBC 3.50
HGB 10.0
PLT 119
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds platelet transfusion

-



Thursday September 1, 2005

Day -14

Kenna's new line was inserted beautifully -- on her chest rather than in her
neck, so it will be more comfortable. In kids that age, they sometimes have
no choice. The hardest part was only the waiting and waiting without eating
until 3pm, and then waiting some more in the surgery center. She sure wanted
the animal cookies that she knew were in the cupboard, but she was very
patient with our "laters." When she's out of her own room, she wears a mask
so she doesn't pick up something before she ever gets started. She had a new
makeup kit gift today.I use the past tense, because she used up the washable
"nail polish" painting all over her feet and legs after she did my fingers.

Daily Counts
Date 09/01/05
WBC 2.9
RBC 3.64
HGB 10.7
PLT 137
SEG/NEUTROFILS 3
BAND 0
ANC 87
Treatment/Meds VAD (broviac) placement





Friday, September 2, 2005

Day -13

Kenna seemed to have a happy birthday. Her new line is working well...no
more pokies. She is tolerating the med today pretty well. They had to back
off the rate and give her some benadryl when she started to get hives and
her face swell. But that worked, and by the afternoon when I went over there
she was receiving it as prescribed, and her room was full of new toys and
birthday posters from the Child Life team.

By far her favorite is a  doll house that can be home for all the Barbies,
along with a grandma, grandpa and baby Barbie, too. Carsyn and Daddy brought
her a cake. Then she and her sister played happily with me  while Daddy went
home and Mom tried to doze to catch up on some of the sleep she is not
getting at night in the noise, light, and lumpy cot.

Daily Counts
Date 09/02/05
WBC --
RBC --
HGB --
PLT --
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds IVIG



 

Saturday, September 3, 2005

Day -12

Daily Counts
Date 09/03/05
WBC --
RBC --
HGB --
PLT --
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds Fludarabine Day 1 of 3

 




Sunday September 4, 2005

Day -11


I had a sleep-over with Kenna Saturday night so that Adrienne could get some
time at home. She hasn't had a good sleep yet on the cot in the room, and
plans to try an air mattress next.

Kenna and I had a good time together. She had the sniffles yesterday. During
the night, the nurse regularly coming in to take her vitals noticed she had
a fever and she was started on antibiotic by the morning. Since she ended
her last antibiotic on Tuesday, it really is pretty good that she got five
days.

She is taking most things in stride-not fighting every procedure like she
used to. When they bring in the syringe with her dose to take orally, she
likes to push the plunger herself to take the nasty stuff. Fortunately, with
this new catheter most can be given that way, so there are far fewer that
she has to take orally.

But there is one drama that as yet there seems no relief for her.that is
tape removal. She doesn't even like a band aide coming off, so the changing
of dressings is a traumatic event. That needed to be done on her surgical
area Sunday evening, which left everyone exhausted and sweaty. I hope the
adhesive manufacturers are working on tape for the skin that is secure
enough but comes off cleaner like is available for walls now. Adrienne said
they painfully worked for ages with the glue removal swabs to clean away all
the residue before putting on more tape that is going to have to come off in
a few days.

A therapy dog came to the floor to visit yesterday. I think perhaps he was
really supposed to avoid her room, but she enjoyed the diversion. Carsyn is
enjoying the puppy, Dusty, that my son Chris just adopted from a shelter
too. As you can see, her boundless energy left him worn out just like it
does us!

Daily Counts
Date 09/04/05
WBC 1.7
RBC 3.05
HGB 8.8
PLT 52
SEG/NEUTROFILS 1
BAND 0
ANC 17
Treatment/Meds Fludarabine Day 2 of 3

 


 

Monday, September 5, 2005

Day -10

Daily Counts
Date 09/05/05
WBC 0.9
RBC 3.01
HGB 8.7
PLT 37
SEG/NEUTROFILS 2
BAND 3
ANC 45
Treatment/Meds Fludarabine Day 3 of 3

 

Tuesday, September 6, 2005

Day -9

Daily Counts
Date 09/06/05
WBC 0.4
RBC 2.81
HGB 8.1
PLT 26
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds ATG (Day 1 of 4)

 

   

Wednesday September 7, 2005

Day -8


Daddy and Carsyn have colds, so they are avoiding the hospital and I am
avoiding them. It's wonderful that he is able to have this time off his job
so he can take care of the home front. He's getting all of Adrienne's
business orders filled which is now almost a full time job itself,
carpooling, homework, and tucks Carsyn in. Then they call Mommy to say night
prayers. Thank you for all of your prayers, because we see this would be
impossible to endure gracefully without them.

Tuesday had its difficulties. Kenna began the second drug about noon. The
benadryl she gets with it knocked her out, so I was sitting with a sleeping
lamb while her mom got a shower and a little time away from the hospital.
Her vital signs have to be watched closely during the administration of the
IV, so about 2pm the nurse put a thermometer under her arm. Kenna awoke like
a tiger and would not be consoled for what seemed like a very long quarter
of an hour. When I stuck in a video I had brought with me that she had not
seen before-the animated story of Our Lady of Fatima-finally something
caught her interest, and she was calm again by the time her mother got back.

Then about 5pm she got the uncontrollable shivers. When her fever went to
104, they decided that they couldn't just presume it was a reaction to the
drug she was still receiving. So although Kenna had been told no more pokies
with the new catheter, the staff insisted that her other port be accessed to
get a blood sample to test for infection. After two attempts, they never did
get a blood draw, but everyone was traumatized, soiled, and exhausted, and I
needed to come back to the hospital to pick up laundry because blankie was
also a victim. By 7pm calm was again restored, but you could see by her face
that she'd had an ordeal.

Well, this doesn't sound too upbeat today. But we can be very grateful that
in between the storms, during the many tedious hours of awaiting a cure,
Kenna seems like a happy healthy little girl and we enjoy her immensely.

Daily Counts
Date 09/07/05
WBC --
RBC --
HGB --
PLT --
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds

ATG (day 2 of 4)
Platelet Transfusion



 




Thursday September 8, 2005

Day -7

Let's see.I'm losing track.I wrote the last letter Wednesday morning.
Wednesday evening I was over there when the results came that there was
definitely something growing in the culture at the lab. Another attempt
would have to be made to access her old port. Fortunately, there was a
traveling nurse there who had worked with Kenna many times at Long Beach and
knew how challenging that is to do, so she volunteered to do the difficult
duty. Although it took quite a bit of doing, she finally got it flowing. But
then it leaked all night so the dressing-and the dreaded tape-had to be
changed several times already by 3am. The antibiotic they started her on for
staph infection caused a reaction-she turned red all over-and the
counter-measures didn't help, so they started her on another one this
morning.

By the time I got there at noon to relieve Adrienne for a while, everything
was calm. Kenna and I had a pleasant afternoon. The Child Life worker came
with her "catheter doll" and Kenna got to do for the dolly all the
procedures that the nurses have been doing to her-she looks like a pro!
Together we also helped Kenna get through another dressing change. When she
started her "I wanna  go home!" mantra, we used my camera as a distraction.
Here are some of the unflattering results.

By time Adrienne returned refreshed, Kenna had just wakened in a good mood
from a nice nap, and the nasty meds were done for the day without any
further complications. I wish them a restful evening.

Daily Counts
Date 09/08/05
WBC --
RBC --
HGB --
PLT --
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds ATG (day 3 of 4)




 

Friday, September 9, 2005

Day -6

Daily Counts
Date 09/09/05
WBC --
RBC --
HGB --
PLT --
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds ATG (day 4 of 4)

 





Saturday September 10, 2005

Day -5


Friday my sister Helen came to visit and give platelets. While she was
hooked up downstairs, I went up to the room to stay with Kenna while
Adrienne showered.

The room suddenly seemed full of people. The Child Life worker came again
with Kimmy the catheter doll. The nurse and a trainee came in to get the IV
changed. The infectious disease doctor came on his daily round with an
assistant in tow. The meal tray person came to clean up. Kenna just wanted
to play with the doll, but the doctor wanted to listen to her chest, the
nurses wanted to access some of the many tubes, and to top it all off they
wanted to replace the sticky electrode pads that had come off with
difficulty (you know, like TAPE). Kenna cooperated though all of it until it
got to the sticky part. She could not be persuaded to give her skin to that
simple procedure, even though she was anxious to get to open the paper doll
princesses I had brought, so again she had to be held down as they were
quickly applied. By the time Adrienne came back the storm was almost over
and she was able to calm everything with a Mama hug and also catch a word
with the doctor, who feels Kenna is on the right antibiotic now, and is
progressing well through these days of preparation.

Today she will begin 5 days of the last round of chemo-the nastiest one that
will eventually attack her hair. For most of the day, they have been moved
out of their room for floor polishing. A special visitor, artist Thomas
Kincaid, came to the wing this morning. Kenna couldn't go to the conference
room, but Adrienne went and got the goodie bag of beautiful art supplies and
a signed book of his works for her. They certainly do their best to provide
activities to break up the tedious monotony of the long hours for the kids.

This afternoon, I'll go over and spend the night to relieve Adrienne who
could use a home visit. Keep up the prayers for the grace that sustains

Daily Counts
Date 09/10/05
WBC --
RBC --
HGB --
PLT --
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds Cyclophosphamide "Cytoxin" (day 1 of 4)

 


 

Sunday, September 11, 2005

Day -4

Daily Counts
Date 09/11/05
WBC 0.4
RBC 3.08
HGB 8.7
PLT 52
SEG/NEUTROFILS 9
BAND 3
ANC 48
Treatment/Meds Cyclophosphamide "Cytoxin" (day 2 of 4)

 




Monday September 12, 2005

Day -3

Saturday night, Kenna and I had our sleep-over as planned. By the time they
finally got around to waxing the floor in her room and were able to move us
back into it at 8pm when it was dry, she had been asleep for an hour.  She
slept all night despite the frequent beeping of her various pumps, and
checking and changing by the nurses. She awoke cheerfully at 7am, and
noticed right away that she was back in her own room.

Adrienne brought Carsyn back with her about 10:30 in the morning and the
noise level in the room immediately escalated as the girls joyfully began
playing together after over a week of separation.

The doctors are very impressed at how well Kenna has so far been tolerating
the strong drugs. We heard today the donor marrow will be arriving from
overseas late Thursday night and she will probably begin receiving them in
the wee hours of the morning. Amazing.

On Wednesday, Sept 14, Minnie Mouse will come to CHOC to do a "minnie-walk"
with the children as a kick-off to the big fundraiser at Disneyland on
October 2. Here is the website for info
http://www.chochospital.org/chocwalk/walk_main.cfm One of Adrienne's
friends, Lee Ann, is going on the walk, if you would like to join her or
sponsor her.

Daily Counts
Date 09/12/05
WBC 0.2
RBC 3.00
HGB 8.6
PLT 37
SEG/NEUTROFILS 18
BAND 0
ANC 36
Treatment/Meds Cyclophosphamide "Cytoxin" (day 3 of 4)




Adrienne often has to walk to St. Joseph's Hosptial (next to CHOC) to get hamburgers at 10pm...Kenna is a night owl!

Tuesday September 13, 2005

Day -2

We're counting down...
The donor marrow is due to arrive at LAX at 4:30pm on Thursday. With rush
hour traffic, who knows when it will get to the hospital unless they use a
helicopter! It will be "cleaned" and then the infusion will be started.
Kenna completed the last of the chemo today and tomorrow is considered a
rest day.

Adrienne is the one who needs some rest. With the chemo, Kenna's appetite is minimal, but she needs the nutrition. At 3am she was awake asking for a
hamburger - the second time this week. The nutrition manager had agreed to
it, providing the hospital cafeteria took extra care in its preparation. The
CHOC cafeteria closes at 7pm, so in the middle of the night a nurse sat with
Kenna, and Adrienne walked through the basement hallway that connects to St
Joseph Hospital across the street, and watched the frozen patty be handled
only with gloves and cooked well-done.

Kenna makes up the sleep, but having been there myself, I know how
impossible that is for the parent with IV monitors beeping, nurses, doctors
and housekeeping coming and going, phones ringing, etc. I have obligations
Wednesday night, she'll want to be there Thursday night, so hopefully she'll
get a night off on Friday.

At least on Thursday she can count on a good meal for dinner. There is a
hospital tradition started years ago in honor of a patient, that once a week
a different volunteer group from a church or organization brings in a full
home-cooked meal for all the parents on the 3rd floor.  Last week I was on
duty and got a yummy Mexican potluck.

Daily Counts
Date 09/13/05
WBC 0.2
RBC 3.18
HGB 8.5
PLT 17
SEG/NEUTROFILS 16
BAND 2
ANC 36
Treatment/Meds Cyclophosphamide "Cytoxin" (day 4 of 4)



Minnie and Mickey visited the kids in isolation for the "Minnie" walk they did for the kids at the hospital who can't make it to Disneyland for the CHOC Walk on October 2nd (We were watching The House of Mouse on TV when they came in...Kenna is trying to figure out how they are in her room AND on TV at the same time!)

Wednesday September 14, 2005

Day -1

After all the drama of the last year and a half, the transplant itself seems
like it is going to be pretty anti-climactic. They anticipate that it will
be ready to give at about 11:30 Thursday night. It is done by gravity drip,
not even one of those noisy beeping pumps, and will be complete in just
about half an hour. Then it's wait and see while trying to protect her from
infections and complications.

Daily Counts
Date 09/14/05
WBC 0.2
RBC 3.07
HGB 8.4
PLT 7
SEG/NEUTROFILS 0
BAND 0
ANC 0
Treatment/Meds

Day of Rest
Platelet Transfusion





Thursday September 15, 2005
Transplant Day!!!

I'm too tired tonight to write much. I spent the day with Kenna and she was
in very good spirits and had several visitors. Her godfather Jeremy came
from San Diego to give platelets. Also we saw her great grandmother from
Palm Desert, an aunt from Carlsbad, a poodle therapy dog, an aunt from
Arizona, a nurse from another floor there who is the daughter of my college
roommate, several doctors, and Carsyn who really livens things up.

When the doctor came in this morning, he said that the flight from Europe
ought to be over Greenland. But this evening we got word that the flight was
two hours delayed. Adrienne and Chris are there with Kenna right now
awaiting the event. Pray and wait.

Carsyn and Kenna both were in awe of the intricate pop-up book from Kenna's
godfather, and Carsyn was not at all pleased when Aunt Kelly said it was
time to leave.

Daily Counts
Date 09/15/05
WBC 0.1
RBC 2.85
HGB 7.9
PLT 80
SEG/NEUTROFILS 0
BAND 0
ANC 0
Treatment/Meds

Bone Marrow Transplant


   


Kenna helping the nurse get her "tubies" ready for the blood lines.
She loves to help push the saline and tear open the alcohol packets!


One of Kenna's Doctors and the Blood Lab technician (AKA Organ transport) go over the tag onthebag of blood to triple check everything.


The IV is run on gravity - not wanting the pump to damage any of the precious stem cells - we got it up pretty high to run it in her as quickly as possible - having come from Europe it had already been outside a body for 18+ hours!

Friday September 16, 2005
Transplant +1


The transplant began at 11:21 and was over at midnight  - a slight elevation in blood pressure but at 300ccs an hour who could blame her! Anyway it came down on its own - and no further complications...she slept though the night!

She'll continue on a variety of meds to ensure healthy grafting. Unfortunately,
they are likely to have uncomfortable side effects such as mouth sores just
like chemo.

Daily Counts
Date 09/16/05
WBC 0.2
RBC 4.20
HGB 11.7
PLT 54
SEG/NEUTROFILS 47
BAND 17
ANC 128
Treatment/Meds

Cyclosporin, Methotrexate

 


After the Benedryl to insure there are no allergic reactions to the blood - Kenna sleeps right though transplant!


   


Saturday September 17, 2005
Transplant +2


Thanks to all who send little emails of support in reply to my updates. They
are welcomed gratefully, but I don't always manage to answer them. We very
much do appreciate your support and prayers.

In case you are wondering, the count of days goes to 100, which will be
Christmas Eve, when if all goes well, she will be considered stable.

I spent the night with Kenna. She was inconsolable for about 5 minutes when
Mommy left, but I think a good cry is probably in order, and even good
therapy once in awhile, for someone who's put up with so much.

Then we had a nice evening together with games, books, dolls, and videos.
They are encouraging her to take in as many calories as possible even if it'
s all sugar and fat. She ate a whole hot dog with five packets of catsup,
and then licked all the catsup off of the bun, the whipped cream from the
top of her chocolate pudding, and all the filling from a dozen Oreos, washed
down with 2 mini-cartons of milk.

I had just climbed onto the air mattress at midnight and was almost dozing
off when our night-owl wanted a banana. I sat with her as she ate that, and
was just about asleep again when she asked for apple juice, but she took my
suggestion to ring for a nurse since it would have to come from the
kitchenette and I didn't have enough energy to wake up again and go that
far.all the way across the hall. I was vaguely aware of them coming and
going to take care of her all night.

The doctors who came by today said she is doing very well and that we
probably wouldn't see any side effects for about a week. Pray and wait.

Daily Counts
Date 09/17/05
WBC 0.3
RBC 3.63
HGB 10.1
PLT 53
SEG/NEUTROFILS 79
BAND 3
ANC 237
Treatment/Meds

Cyclosporin



 

Sunday September 18, 2005
Transplant +3

Daily Counts
Date 09/18/05
WBC 0.3
RBC 3.34
HGB 8.8
PLT 34
SEG/NEUTROFILS 66
BAND 7
ANC 219
Treatment/Meds

Cyclosporin, Methotrexate


Monday September 19, 2005
Transplant +4


The doctor who checked on Kenna today asked, "Did we give this child any
chemo? She looks great." So far, everything is looking very good. She even
got her lines "hep-locked" today so she is free of being tethered to the IV
pole for a little while. Considering that last week she had 6 pumps
piggybacked together and going at once, it feels wonderful to roam
effortlessly around the room without pulling and pushing the pole along and
tripping over a half dozen lines, even if she is not allowed to leave the
room.

True to his threat, her daddy shaved his head bald over the weekend to be in
solidarity although Kenna hasn't lost her hair yet. Kenna wouldn't look at
him without his hat on. I'll send photos when I get them.

Daily Counts
Date 09/19/05
WBC 0.1
RBC 3.45
HGB 9.3
PLT 25
SEG/NEUTROFILS 77
BAND 6
ANC 83
Treatment/Meds

Cyclosporin



  Tuesday September 20, 2005
Transplant +5
Daily Counts
Date 09/20/05
WBC 0.1
RBC 3.31
HGB 8.9
PLT 16
SEG/NEUTROFILS 48
BAND 8
ANC 56
Treatment/Meds

Cyclosporin


  Wednesday September 21, 2005
Transplant +6
Daily Counts
Date 09/21/05
WBC 0
RBC 2.94
HGB 7.9
PLT 6
SEG/NEUTROFILS 80
BAND 0
ANC 0
Treatment/Meds

Cyclosporin
Platelet Transfusion


 

Thursday September 22, 2005
Transplant +7


So far, so good. Kenna still looks good, seems to feel pretty good, is
eating well.and still doesn't want to look at her daddy without his hat
on.but there is evidence on her pillow and in her bath that her own hair is
thinning. We continue to pray and wait. Thanks for joining us in that.

Daily Counts
Date 09/22/05
WBC 0
RBC 2.71
HGB 7.5
PLT 68
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds

Cyclosporin




 

Friday, September 23, 2005

Transplant +8

Daily Counts
Date 09/23/05
WBC 0
RBC 2.52
HGB 6.9
PLT 55
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds

Cyclosporin

 


 

Saturday, September 24, 2005

Transplant +9

Daily Counts
Date 09/24/05
WBC 0
RBC 3.66
HGB 9.9
PLT 28
SEG/NEUTROFILS 17
BAND 0
ANC 0
Treatment/Meds

Cyclosporin

 




Sunday September 25, 2005
Transplant +10


The doctors are still very impressed with Kenna's progress, even though for
us it is not going quite as smoothly. Since Friday, she has been bothered by
itchy hives, and an on and off fever. She's on antibiotic for the fever and
they have now decided to change one of her medications to see if she has
developed a reaction to the one she had been on. They feel sure it is just a
sensitivity that is not unexpected, but is not a host vs. graft problem, for
which we are very grateful.

Carsyn went over with me on Friday to visit, and Kenna is always just
thrilled to see her. Even though Carsyn soon gets busy with a coloring
project, Kenna snuggles up time and again to give her another hug. Kenna
wanted to be sure Carsyn got to meet her special friend, Felix ("Fewix"),
the medical aide working at the station just outside her windowed wall, who
carries on games of peek a boo and comes in to cheer her up on bad days.

Then Adrienne took Carsyn home with her and I stayed over the night, until
Saturday afternoon when Mom returned, as well as Daddy and Carsyn. Kenna was
finally able to appreciate Daddy's new look. With her own hair coming out by
the handfuls and getting stuck to everything, after her bath she let Momma
trim it off to a more manageable length. She's fine with it if she doesn't
have to look in the mirror!

Daily Counts
Date 09/25/05
WBC 0.2
RBC 3.06
HGB 8.8
PLT 15
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds

Cyclosporin tuns out to be an allergy, so itchy and hives! - so we swtich to Cell-Cept




 

Monday, September 26, 2005

Transplant +11

Daily Counts
Date 09/26/05
WBC 0.2
RBC 2.73
HGB 7.8
PLT 113
SEG/NEUTROFILS 0
BAND 0
ANC 0
Treatment/Meds

CellCept, Methotrexate

 




Tuesday September 27, 2005
Transplant +12


The last two days there has been a little blip in Kenna's counts. Today the
doctors were willing to say that it doesn't seem to be a fluke, but a
genuine sign of engrafting! There is even a flicker of some white cells
forming-those are the one's that can't be transfused, but have to have been
made by her own body. This is very encouraging progress even though the many
hazards of complications still hover. She continues to run a fluctuating
fever, but the cultures are negative, so the consensus is that this is
probably just her body's reaction to the process. She is on a new medicine,
so thankfully now the hives are no longer a problem. The doctors are also
impressed that although her appetite is sporadic, she is still eating enough
on her own to maintain her weight, and hasn't required supplemental
nutrition by now. The medical possibilities are marvels, but it's grace that
enables them. Thank you for your prayers.

When I spent the night with Kenna last week, I didn't share with you the
photos of her trying on the costume her aunt made for her. All the
night-shift nurses came in to receive a royal audience with the princess,
which took the edge off the hives and the nuisance of shedding hair for a
little while.
Daily Counts
Date 09/27/05
WBC 0.3
RBC 1.77
HGB 5.4
PLT 89
SEG/NEUTROFILS 6
BAND 15
ANC 63
Treatment/Meds

CellCept





Wednesday, September 28, 2005

Transplant + 13

Daily Counts
Date 09/28/05
WBC 0.3
RBC 2.31
HGB 7.1
PLT 51
SEG/NEUTROFILS 18
BAND 6
ANC 72
Treatment/Meds

CellCept

 





Thursday, September 29, 2003

Transplant +14

There is a problem with Kennas red cell counts - they have fallen off to a dangerous 5.4 and a packed red cell transfusion only brought them up to a still low 7.8 over the last couple of days. The doctor has run some more tests to find out why. It turns out Kenna has an antibody against her own red cells - they are being destroyed. However he assures us this is just a "hiccup" and will correct itself as the new Bone Marrow takes over - the antibody is against her A+ cells only so once the new bone marrow completely takes over with the O+ the antibody should just go away. But in the meantime she will require more frequent transfusions - of only O+ blood and he is starting a steriod tomorrow to help keep the red cells she has from falling off so fast.

The good news is that Kenna's new marrow is definately engrafting..the white cells are continuing to climb...slowly.

Grandma B spent the night again tonight and Adrienne went home in the early afternoon for a meeting with Carsyn's teacher - shortly after Adrienne left Grandma noticed a rash and called the nurse you determined it was the beginning of host vs graft disease. The nurse immediately called the doctor who authorized the start of a heavy dose of steriod to combat it.

Daily Counts
Date 09/29/05
WBC 0.3
RBC 1.93
HGB 5.9
PLT 37
SEG/NEUTROFILS 55
BAND 6
ANC 183
Treatment/Meds

CellCept, Solu-Medrol

 


 

Friday, September 30, 2005

Transplant +15

Kenna woke to tell grandma that her legs hurt - the nurse determined it was proably "growing pains" from the cells engrafting and gave some Fentinol (pain medication) When Adrienne and Chris came back to the hospital to relieve Grandma, Kenna was is fine form! The steriod worked - there is no trace of the rash left - only the petiche from where she scratched the rash all night.

Kenna took and early nap and slept fitfully until the nurse finally brought some more Fentinol. After that she felt better and woke and was hungry about 9.

Adrienne had a harder time of it tonight - the high dose of steroid left Kenna inconsolable by midnight - the "'roid rage" had Kenna crying for more than 2 hours - during which she got some Ativan (anti-anxiety) which didn't help. She sobbed - and chanted, like a mantra "I wanna go hooooome". Once she finished with that she alternately cried and laughed and was very mad as she tried to color an entire coloring book in one sitting...the 64 color choices just weren't right...and "I'm huuungry" turned into the new mantra. Unfortunately the cheese and frosted mini wheat choices were lacking tonight - so nothing was working...

By 4am the nurses finally took pity on Mom and brought in some Benedryl which thankfully knocked Kenna out this time!

Daily Counts
Date 09/30/05
WBC 0.4
RBC 3.04
HGB 9.2
PLT 25
SEG/NEUTROFILS 29
BAND 38
ANC 228
Treatment/Meds

CellCept, Solu-Medrol

 


Saturday, October 1, 2005

Transplant +16

Good news - she is definatley engrafting! ANC of 570 today! The doctor came around when Adrienne and Kenna finally roused from their late night around 11am to say that he is VERY pleased with Kennas progress - the marrow is definately engrafting - a white count of 1.0 today! and the platelets have almost leveled off. The reds are still falling but slower now that the steriods are on board. There is no more sign of GVH (graft vs Host) and if things continue like this Kenna will be allowed to visit the playroom again (with a mask on) her ANC needs to remain above 500 for more than 3 days... and she is considered "engrafted". And the doctor says that once the A+ cells are completely out of her system in a few weeks, the red cells won't be a problem anymore either.

Since her white counts are coming up so well, the doc feels that Kenna is "out of the woods" as far as major infections go - but there is still a chance for GVH for quite a while so we will have to watch closely. And he is knocking down the heavy steriod by 25% today and 25% tomorrow - thank goodness! Kenna was a little moodier than usual today - but by far NOTHING like last night!

Daily Counts
Date 10/01/05
WBC 1.0
RBC 2.82
HGB 8.3
PLT 23
SEG/NEUTROFILS 51
BAND 6
ANC 570
Treatment/Meds

CellCept, Solu-Medrol

 


 

Sunday, October 2, 2005

Transplant +17

Daily Counts
Date 10/02/05
WBC 1.4
RBC 2.88
HGB 8.6
PLT 20
SEG/NEUTROFILS 50
BAND 8
ANC 812
Treatment/Meds

CellCept, Solu-Medrol



Monday, October 3, 2005

Transplant +18

We are thankful, awed, excited.and still holding our breath. Kenna's counts
are fluctuating a bit depending somewhat on which drugs are interfering --
probably from the steroids as they wean her from them -- but on the whole,
are all continuing to rise. ANC is the magic number that indicates cell
growth. It is a composite of the baby red, white, and platelet cells that
are forming. When it is over 500, she is considered somewhat protected from
common minor germs. Yesterday it was at 800, today at 700. Normal is about
5,000. She is not expected to get close to that until somewhere around 100
to 180 days. She has been allowed to leave her room and visit the playroom
with a mask on.
I  went to see Kenna tonight, along with my roommate who is moving overseas
this week. They have become good friends and wanted to say good-bye. Kenna
was thrilled to see Anita. She was in fine form tonight, and so we had a
very joyful visit.

Daily Counts
Date 10/03/05
WBC 2.0
RBC 2.91
HGB 8.6
PLT 27
SEG/NEUTROFILS 33
BAND 2
ANC 760
Treatment/Meds

CellCept, Solu-Medrol


Tuesday, October 4, 2005

Transplant +19

Daily Counts
Date 10/04/05
WBC 2.7
RBC 2.73
HGB 8.1
PLT 46
SEG/NEUTROFILS 48
BAND 10
ANC 1566
Treatment/Meds

CellCept, Solu-Medrol


 

Wednesday, October 5, 2005

Transplant +20

Daily Counts
Date 10/05/05
WBC 2.9
RBC 2.66
HGB 8.0
PLT 59
SEG/NEUTROFILS 51
BAND 11
ANC 1798
Treatment/Meds

CellCept, Solu-Medrol


 

Thursday, October 6, 2005

Transplant +21

The doctors have really tapered off the steriods in anticipation of going home without them and have started converting all her IV meds to PO (by mouth) meds so we are all ready to get discharged early next week. The Port-a-cath will no longer be accessed but won't be removed until the Broviac is taken out sometime after day 100 - saving a trip to the OR before we go home!

Adrienne was "OK'd" by the nurses on the flushing and changing of the dressing on the Broviac which will have to be done everyday at home until the line is removed. Mostly just sit a wait at this point...Kenna and Adrienne ventured off the 3rd floor for the 1st time today - to get a soda in the cafeteria (during a lull in business) it was a nice excursion, and of course trips to the playroom are frequent - CHOC doesn't have quite the video collection that LB did so any VHS donations to Child Life are appreciated - especially PG-13 type movies for the older kids and teenagers!

Daily Counts
Date 10/06/05
WBC 2.9
RBC 2.86
HGB 8.4
PLT 76
SEG/NEUTROFILS 66
BAND 2
ANC 1972
Treatment/Meds

CellCept, Solu-Medrol

 


 

Friday, October 7, 2005

Transplant +22


Daily Counts
Date 10/07/05
WBC 2.8
RBC 2.85
HGB 8.5
PLT 88
SEG/NEUTROFILS 65
BAND 8
ANC 2044
Treatment/Meds

CellCept, Solu-Medrol

 

Saturday, October 8, 2005

Transplant +23

It's awesome. The numbers are increasing a little every day. She is getting
most meds by mouth now, so only needs her "tubies" -- the IV lines -- in the
morning and evening. I called the other day and could hear her in the
background and thought she was crying...no, she was dancing and singing!
When I got there yesterday she was twirling around to make herself dizzy --
can't do that when attached to a pole. All day she is free to roam with her
mask on.

I spent the night with her last night and Mom went home to enjoy the parish
festival with Carsyn and Daddy. We visited the playroom several times and
each time added an animal  to her collection. Now Carsyn and I are off to
San Diego for a family gathering there tomorrow.

Daily Counts
Date 10/08/05
WBC 4.1
RBC 2.94
HGB 8.9
PLT 123
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds

CellCept, Solu-Medrol

 

 

Sunday, October 9, 2005

Transplant +24

She's coming home tomorrow!!!

Her ANC is up to 2800, she is not taking any IV meds, and the doctors are
calling her a phenomenal case -- but we all know it's phenomenal grace!!
Thanks be to God! We will be most grateful for your continuing prayers
during these coming months of risk and adjustment.

And Adrienne and Chris are going to have their hands full!! After two years
of being anemic, Kenna is really feeling frisky. Adrienne went next door to
the kitchenette for three minutes to pop some popcorn for Kenna and came out
to find the staff all watching Kenna putting on a show through her glass
wall. Since Carsyn is already a bundle of non-stop energy, as her aunts and
I experienced on our visit to San Diego this weekend, the two of them
reunited will be an explosion of joyful exuberance.

Daily Counts
Date 10/09/05
WBC 3.7
RBC 3.08
HGB 8.9
PLT 135
SEG/NEUTROFILS 76
BAND 4
ANC 2960
Treatment/Meds

CellCept


Friday, October 14, 2005

Transplant +29

Daily Counts
Date 10/14/05
WBC 2.4
RBC 2.91
HGB 8.7
PLT 188
SEG/NEUTROFILS 56
BAND --
ANC 1344
Treatment/Meds

CellCept



Monday, October 17, 2005

Transplant +32

Kenna's been home a week and the doctors say she is doing extremely well.
Her counts fluctuate a bit due to the meds she's taking, so we have to keep
looking at the overall picture and not at the bleeps.

At her checkup on Friday, they said she could go outside with her mask, so I
took the girls on a walk to the park. What fun to run and climb, swing and
slide! So much to do that I didn't remember to take any photos. It's very
nice to have the days more normal. So Adrienne just snapped pictures for you
of Kenna entertaining herself as she waits for Sister to get home from
school.

Carsyn made herself a little journal that she titled MY EVENTURES. She
wouldn't let Mom spell "adventures" for her. In it she listed the things we
stopped to look at on our stroll: dog, lion statues, butterfly, spider,
etc.-- everyday events that bring us joy and gratitude that we are now again
able to be out and about discovering together in God's beautiful world.

Daily Counts
Date 10/17/05
WBC 2.5
RBC --
HGB 7.8
PLT 141
SEG/NEUTROFILS 57
BAND 3
ANC 1500
Treatment/Meds

CellCept


 

Friday, October 21, 2005

Transplant +36

Daily Counts
Date 10/21/05
WBC 2.7
RBC 2.84
HGB 8.8
PLT 160
SEG/NEUTROFILS 57
BAND 10
ANC 1809
Treatment/Meds

CellCept

 

Monday, October 24, 2005

Transplant +39

Daily Counts
Date 10/24/05
WBC 3.1
RBC 2.69
HGB 8.4
PLT 188
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds

CellCept

Friday, October 28, 2005

Transplant +43

You haven’t heard from me because my computer failed to be repairable after a week in the shop, so now after also doing a little traveling, I’m trying to figure out how to transfer over my address books and files from the old laptop to a new one. I only know just enough to be dangerous.

Kenna is doing very well. At her last check-up, her test results showed she is now 100% donor. Carsyn has had a fever and nasty cold this week, but Kenna has enough immunity of her own that so far she doesn’t even have a sniffle. Thanks be to God. We still have several months of caution, so we are grateful for your continued prayers.

 

Daily Counts
Date 10/28/05
WBC 2.8
RBC 3.44
HGB 10.5
PLT 269
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds

CellCept

Monday, October 31, 2005

Transplant +46

Daily Counts
Date 10/31/05
WBC 2.9
RBC 3.14
HGB 9.5
PLT 264
SEG/NEUTROFILS 62
BAND 11
ANC 2117
Treatment/Meds

CellCept

Friday, November 4, 2005

Transplant +50

Daily Counts
Date 11/04/05
WBC 3.1
RBC 3.14
HGB 10.0
PLT 222
SEG/NEUTROFILS --
BAND --
ANC 2117
Treatment/Meds

CellCept

   


Monday, November 7, 2005

Transplant +53

Monday November 7, 2005
 
We are truly witnessing a miracle. Kenna continues to get regular checkups, but hasn't needed a transfusion in weeks.
 
Carsyn took quite a while getting well from her virus, with a whole week off of school, but Kenna never got it!
 
The girls and I have been taking long walks to the park, and we have resumed Sunday evening family dinner, although I take the meal over there. In getting ready to eat, the girls made a flying dash to wash their hands and Kenna crashed into a shelf. The nasty blow to the side of her head would have meant an immediate trip to the hospital with profuse bleeding and a possible severe brain injury just 2 months ago, but now she recovered with a few tears and didn't even have a bad bruise the next day.
 
Kenna is very good about putting on her little mask whenever she steps outside the door. They enjoyed a trip around the neighborhood in their costumes on Halloween.
Life is taking on a "normal" routine.
 
Thank you for your continued prayers and enjoy the photos

 

Daily Counts
Date 11/07/05
WBC 4.1
RBC --
HGB 10.2
PLT 263
SEG/NEUTROFILS 72
BAND --
ANC 2952
Treatment/Meds

CellCept

   
 

Friday November 11, 2005

Transplant +57

 
The other day, Carsyn was telling her mom that she had a bad dream. Kenna joined in and said that she just had a good dream: an angel came and told her that she was going to get well. She was going to get her Broviac out and her hair would grow back fast. "You know God's angels are stronger than any monsters." That's what her friend Father Jarek told her last spring when she was drawing scary pictures for him and she repeats it often.
 
Well, today the Doctor confirmed it at her checkup! He said she is CURED from Aplastic Anemia. They still have to watch for GVH - host vs graft disease - and guard against infections, but otherwise she is well. He  is scheduling her for surgery to remove the catheters, since they are cutting back her check-ups and blood tests to once a week, and soon to once a month. He said she is OK to have extended family Thanksgiving dinner, although caution against crowds and those who are sick is still necessary. But every day is one of Thanks for this great mercy that I pray we never take for granted.

 

   
 

Monday, November 21, 2005

Transplant +67

Daily Counts
Date 11/21/05
WBC 4.7
RBC 3.44
HGB 10.7
PLT 248
SEG/NEUTROFILS 73
BAND 1
ANC 3478
Treatment/Meds

CellCept

 

   
 

Friday  December 2, 2005

Transplant +78

Our holiday was quiet with much to be thankful for. Hope yours was also blessed. It’s been very nice getting to do other things than write updates and visit the hospital!

Today, I spent the afternoon with Kenna while Mom went to a school conference for Carsyn. She got a good review if she will just get a little more interested in reading. Her spatial skills were comparable to an 11 year old – takes after her mom and dad – so they suggested soccer might be good for her. Maybe now there will be time for such things in the family schedule. Kenna also seems to have that talent. She has been doing 100 piece puzzles so easily, that this week she turned a puzzle over and did it with the solid backside up.

She is so happy and healthy. It seems ironic now that she is considered cured, she finally looks sick! When we go out for a walk, she is always sure to put on her little mask, and her hair hasn’t come back so that you would notice yet -- it looks like a lot more in photos than it does in person. 

Next week, December 8, surgery has been scheduled to remove the Broviac line and her portacath. One more stepping stone on the way to that first 100 day benchmark on the eve of Christmas vigil. Since she only needs a blood test every 2 weeks now, they feel the risk of infection outweighs the convenience. It will be one less worry for Adrienne who has to flush and redress it every day. When this first started, Kenna was very good about getting an IV -- until the night they tried too long and hard, so it turned into a trauma. But she has never, ever liked to have her portacath accessed. Hopefully, bi-monthly IV blood test will be taken in stride.

Chris, the daddy, has returned to work from his family leave of absence. It was such a blessing for him to be home during these days of hospitalization and adjustment. Fortunately this surgery will be done before my weekend trip to New Jersey and my two week vacation to Bogotá over the holidays, so that I can help with Carsyn that day. It is supposed to be a simple out-patient procedure, but those always take all day. I will let you know how it goes. Thank you for keeping us all in prayer.

 

 

Wednesday, December 7, 2005

Transplant +83

Daily Counts
Date 12/07/05
WBC 5.8
RBC 4.04
HGB 12.5
PLT 247
SEG/NEUTROFILS --
BAND --
ANC --
Treatment/Meds

CellCept

 

Thursday December 8, 2005

Transplant +84

Surgery went well. Kenna's freind at CHOC, the child-life advocate, brought
her "Kimmie" doll, who also has "tubbies," to the surgery center during the
wait. They played together talking about the procedure and the pricks that
Kenna would now be getting in her arm for blood tests the next few months.
She was also able to accompany Kenna into the surgery -- parents can't. She
came out to tell Adrienne that Kenna went very happily. When it was over,
Mommy and patient came home and both took a long nap. Kenna woke up saying
she was a "big bit" sore, but looking forward to being able to go down the
slide on her tummy.

   
 

Monday, December 19, 2006

Transplant +95

Daily Counts
Date 12/19/05
WBC 4.7
RBC 4.39
HGB 13.3
PLT 308
SEG/NEUTROFILS 69
BAND --
ANC 3243
Treatment/Meds

CellCept

 

   
 

Saturday, December 24, 3005

Transplant +100

 

 

See our Post Transplant Page for the rest of Kenna's story....

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