Wednesday April 13, 2005

Today Adrienne and Chris went to Children's Hospital of Orange County (CHOC) for initial consultation about the bone marrow transplant. They decided on that hospital rather than UCLA for a number of reasons - reputation and
travel time being the most influential. They were extremely impressed with
the facility, and also with the doctor who spent unhurried time with them
explaining all the procedures. The Child Life program there is supposed to
be excellent for preparing both Kenna and Carsyn for what to expect from the
experience.

A donor search will be started tomorrow in the registry and a match likely
by late next week, probably with several to choose from. Then treatment will
be scheduled according to the donor's availability. Mid to late June is
possible.

Kenna will be in isolation for 6 to 8 weeks. She will receive an initial
dose of chemotherapy to completely suppress her immune system. That will
cause hair loss, but since it is not sustained dosage, re-growth will begin
immediately. Once the graft takes, it will begin working quite rapidly and
she may not even need transfusions by the fall. Of course, there are many
complications that can disrupt the ideal course of this procedure, but for
now the whole thing sounds very distasteful but very hopeful. May God grant
His grace to all the protocols and to the doctors He has blessed with the
skill for this, and that we will all be open to the blessings hidden in the
difficulties.

Wednesday -  April 27, 2005

We've gotten word that there is a preliminary selection of 14 possible
donors from the Bone Marrow Registry. Those will be contacted about
availability and their present health, and then the choices will be narrowed
by more specific blood matching.

Kenna's ANC count continues to fluctuate.at 1100 this week.800 last
week.1900 two weeks ago. There is still the possibility that her own cells
will begin to form before the transplant is done. One child's donor was here
from England and they were a day away from the procedure when a final sample
showed cell growth - we keep hoping and praying.

If you are interested, here is a link to give you an idea of what I have
been up to. My faith sharing group uses a selection from these books at our
meeting each week. The perspective sure has helped me get through the rough
times this year.
http://catholic.net/the_road_to_heaven/template_article.phtml?article_id=294
0&channel_id=16

Wednesday May 4, 2005

We have now heard that the field of potential bone marrow donors has been
narrowed down to the best three, closest matches. They have been asked to
come in next week for more specific testing. Those results will take about
two weeks.

Kenna continues to need blood and platelet donors at Long Beach Memorial for
the next few weeks. Once the steps of her procedure actually get underway,
her whole case will be transferred to CHOC, and then her weekly transfusions
will be done there. Thank you to those who have been so faithful in keeping
her alive this way, and to all of you who have been sending A+ friends and
family to the blood donor center during this long year. And of course, we
are immensely grateful for the prayers that support us.

We made a visit to "baby Jesus" and Mary at church when we went to pick up
Carsyn from Kindergarten today. I spent several hours with them while their
Mom got some errands and appointments done. Kenna is growing in vocabulary
and personality -- and out-growing all of her clothes -- as she develops
into a 4 year old. You'd never guess there was a thing wrong with her.
There's something delightful and fresh in every story they tell and game
they invent. I'm exhausted at the end, but thoroughly enjoy every minute of
God's precious gift in them.

Wednesday May 25, 2005

Adrienne and Chris thoroughly enjoyed their weekend at the paper products
convention in NYC last week. The girls got along fine with their alternate
mothers, Aunt Kelley and me. I took Kenna for platelets on Saturday - the
first time she's gotten them without Mommy - and Kelley took Carsyn to
soccer sign-ups and to her last softball game of the season.

We are still waiting for word about the test results from the three bone
marrow donor candidates. Kenna sees the ear specialists again tomorrow for
the recurring infections and may  be getting tubes in her ears on Friday.
She will have to be high in platelets for the surgery - but it is expected
to be uncomplicated and out-patient. Today when they checked her counts,
there was a blood blister on the skin covering her port so the parents are
on fever watch to detect any signs of infection.  Thank you for your
continued prayers and blood donations.
--

Saturday May 28, 2005

There was an update from the transplant team yesterday. Of the donors
tested, one shows 10 of 10 matching factors and the other is 9 of 10. They
are usually satisfied if they find 8 of 8, so that's good news. They are
still waiting on the testing of the third candidate because other criteria
also make for better results, so they won't select until all results are
considered, since age and health will also need to be evaluated. We won't
know anything about the donors, even where they are from, until a year after
the transplant is considered a success - and then only if the donor requests
it.

Friday  July 15, 2005

Following the promising high in Kenna's ANC count several weeks ago, there
has been a steady decline, until this week it is low enough that it is no
longer prudent to intermingle with others, since she lacks the minimum of
white cells for fighting infection. The last two days she has been running a
low fever, which is another indication that her body is using alternate
means to defend against infection. If the fever escalates, she will have to
spend time in the hospital, but fortunately Tylenol is controlling it for
now.

A side effect is that the fever also burns up her platelets and red cells at
a faster rate, so she will need more frequent transfusions. She was infused
on Monday and had to go in again already today. We so appreciate those who
are able to be donors, or who are encouraging others to come to the Long
Beach Memorial Donor Center.

Also, many have asked us about being bone marrow donors. There is little
girl in treatment with Kenna who has a much more rare blood composition
because she has an Asian background. There will be a blood and bone marrow
drive at the hospital on Tuesday, July 19. This is the best way to get into
the Registry without incurring fees. Hopefully, many will take advantage of
this opportunity to save someone with this or similar disease. For info call
562-933-0808

We received an update this week on Kenna's transplant procedure. There is no
doubt now that she needs to undergo this next step. The best donor has been
selected from the Registry and the formalities are being arranged for
mid-August. She is so fortunate to have had several candidates to choose
from.

But life this month has certainly not been all hospitals and treatments. In
between, there have been many happy hours at the park and splashing in the
backyard wading pool. Carsyn has enjoyed Vacation Bible School, outdoor
science camp, and a daily reading class. Adrienne and Chris have been busier
than ever with Custom-Programs.com. They are currently in production of
invitations/programs for 54 weddings and events.

Hope you enjoy the photos and thank you for continuing the sustaining
prayers.

Monday  July 18, 2005

Adrienne put in a call to the doctor this morning and then took Carsyn to
school and swim lessons while I watched Kenna. She was in good spirits, but
pale with dark circles under her eyes, a sign of dehydration.

Since she is still running fever for the 5th day, it was decided to admit
her to the hospital for three days. Her temperature spiked to 103 there
already --  but maybe that had something to do with the trauma of having two
different nurses each trying twice to access her port. Finally, after some
Ativan and the arrival of the nurse most experienced in infusion, Kenna's
fluids were underway.

Tuesday July 19, 2005

Adrienne tells me this morning that they both slept most of the night. And
she was grateful that Kenna was willing to let her sleep in the fold-out
chair, rather than sharing the hospital bed. Even though it's a bit lumpy
and hard, it is still roomier now that Kenna is not the tiny little 2 year
old she was when this started

Kenna woke up at 3am to do some coloring and have a snack of "sister
chips" - that's cheese Doritos for those of you who don't remember the
middle-of-the-night incident during her first round of treatment last year.

Coloring pages have become her latest passion. She chooses one color for the
day and uses a crayon down to a nub, tearing off the protective sleeve as
she goes, and solidly covering each entire paper. Then she's ready to start
with a new crayon which must be of the same color - yesterday was an orange
day.

Kenna is still asleep this morning, but the nurse who did vitals said that
there is no fever for now.

Friday July 22, 2005

Kenna's fever was gone by Wednesday, so she was allowed out in the hallways
and playroom. That made the hospital stay a bit less confining.

After Carsyn's summer reading class and swimming lessons, she and I went
over each day this week to give Momma a break. Carsyn would then go out
shopping or home with Adrienne. Kenna's color of the day has varied between
brown and orange. She's been in pretty good spirits for the most part.

On Thursday, both girls stayed in the playroom with me because it was the
day that it has extended hours and the Child Life team brings costumes and a
special craft. Adrienne was able to find a quiet patio to return a long list
of business calls.

Their release was scheduled for early Friday morning, so she had gotten her
platelet "refill" and all the paperwork was almost completed when the Floor
got 4 new admits on Thursday evening. Because they were also cases of fever,
private rooms would be needed and shuffling of patients would begin. Kenna's
doctor gave the OK and she was discharged at 9pm. I was already at the house
with a sleeping Carsyn for Daddy to finally get a break from all the orders
he's been working on alone - so no Jacuzzi again for him.  Instead he went
over to Long Beach to help carry all the stuff out of the room.

They are happy to be back home sooner than expected. Her ANC is very, very
low, so she is readily vulnerable to another infection, but for now the
adults are tuckered out but all is well and we are all grateful.

Monday July 25, 2005

The family enjoyed a nice quiet weekend at home. on Sunday Carsyn spent the
day at the beach with me and a couple of my friends from out of state who
wanted to experience  the Pacific ocean. She knows how to have fun and how
to spread it around.

This morning, I was I was waiting for Kenna to wake up while Momma took
Carsyn to swimming lessons. Just before they walked in the door, a blankie,
then a clean set of clothes, and then a fresh diaper came flying over the
stair rail, and then a smiling little face came down to greet me, chatting
amiably about the members of her family: who was bigger, who was in charge
of what. It's so cute to hear the way she is now very purposely pronouncing
the "th" sound.

Unfortunately, she also brought a fever down with her, too. So already this
evening she is being readmitted to the hospital for another few days. Thank
God for His medical marvels that have kept this precious babe close to us,
and for the graces these trials have offered all of us. How this has
encouraged us not to take so much for granted!

Monday August 1, 2005

It was a very nice weekend. Each of the parents got a "time off" outing:
Daddy with his motorcycle group and Mommy with a girlfriend for dinner and a
movie.

On Saturday, the whole family went to the wedding of  one of our dearest
friends, Marilyn, who grew up with my kids.except Kenna who stayed at home,
safely out of the crowds, with her Aunt Carol who came up from San Diego for
the day.

Even with the precautions, the pattern continued as she awoke with 102
temperature this morning. Adrienne put in the call to the doctor and got
busy getting all her orders caught up while I took Carsyn to swimming
lessons. With Tylenol, Kenna felt fine, so I took the girls for a sunny walk
while Adrienne did her business errands, and by noon they were headed back
for a week in the hospital. Kenna said she was happy to go because she was
looking forward to watching Sponge Bob Square Pants all day. Somehow that
seems scarier to me than her illness!
--

Sunday  August 7, 2005

Just as is becoming habit now Kenna's fever returned Saturday night....the
normal 3 days at home having been exhausted.

With Mom on retreat this week I thought I would do the updating from my
marvelous dial up connection here at the hospital...thank goodness grandma
Cheryl flew in from AZ just today to help out! Chris and Carsyn dropped
Kenna and me off at the hospital entrance and while we got Kenna settled,
Chris and Carsyn carried the rest of our "hospital boxes" full of games and
videos up from the car and helped us settle in while waiting for Cheryl's
11:20 flight to get in at LAX.

The fever returned with a vengeance this time - 102.5 during the night and
she was admitted back to the hospital early this morning...at last check she
was up to 104.5 - and having gotten her CBC blood test result back we can
see why...her White cells (the infection fighters) are down to .9 (normal
range is 5.5-15.5) she had been hovering just under 2 the last couple of
weeks.

Again we will have to wait to see if the blood culture show infection - the
1st results usually come back within 24 hours.

And of course her fever has once again eaten up all the platelets so she
will be getting another transfusion again today - blood bank has told me
they only have 50cc's of directed donor blood left to give her - so she will
be pulling from the general pool again until it is restocked....THANK YOU
again to all those who have given so generously of their time and precious
blood to Kenna - we truly appreciate it!

CHOC has called again late Friday to say the they want to begin the
preliminary tests on Kenna sometime this week...now that we are admitted
back here in LB - perhaps they will opt to do some of the testing here or
maybe transfer her to CHOC for this since with such a high fever it is
unlikely we are getting home in the usual 4 days this week...we will know
more when the transplant coordinator calls back on Tuesday.

But thankfully everything is still in place for the Bone Marrow Transplant -
we cannot wait for September 1 to be admitted to CHOC begin the process and
for the 16th when the transplant will take place. Thank you all for your
continued thoughts and prayers!

its' a Barbie party....she had them all arranged for the docs to see when they came though to admit her....all the docs couldn't belive she had 104 fever!

Monday August 22, 2005

I'm not sure where I left off with updates. I was gone last week and I think
Adrienne filled in some of the events, but I don't know if everyone
got the report. Gramma Cheryl was here from Arizona to care for Carsyn
during that week. Starting this week, Daddy will be on 3 months of Family Leave from his job and taking care of things on the home front as the big event comes close.

Kenna was sent home a week ago with a home health nurse providing assistance for administering the remainder of her antibiotics at home. That worked beautifully and was a great relief for them. She finished the required days of dosage on Tuesday and remained fever free until yesterday. Today with 103 fever they have returned to the hospital and are hopeful that after the initial lab tests and cultures are completed and the fever is brought under
control, they will again be allowed to finish the treatment at home. She
seems to feel fine except for itchy eyes and a runny nose. As you can see in
the photo, she immediately arranged her bed with every Barbie she owns. She
gets a new Princess Barbie from the hospital collection of donated toys
every time she visits.

On Saturday, Carsyn celebrated her 6th birthday with a trip to Disneyland
with her parents. Wearing a special sticker, she was greeted personally by
every character and cast member on all of the rides and had a wonderful
time. Kenna and I got to sit home and watch three Barbie Princess videos
together. They are actually very nicely done fairy tales, and for me, a
great improvement over Sponge Bob!

During the hospital stay last week, the some of the  preliminary tests were
completed for the transplant procedure. They also had one of several consult
appointments with CHOC. Kenna will not be subjected to another bone marrow
sampling since her ANC is non-existent now, so it's obvious there is no
activity of her own. She will be admitted to CHOC on Wednesday, August 31 to
get an inital blood transfusion before her surgery to insert a Broviac
catheter on the 1st. She will begin IVIG an immume system booster on the 2nd
(her 4th birthday) before beginning 12 days of
three types of chemo on Saturday Sept 3.

Those who are supporting her with blood donations will want to know that she
will continue to receive blood transfusions at LB until she is admitted to
CHOC. Then all of her transfusions will be done at the Children's Hospital
in Orange, and she will need A+ donors for two weeks. However, the amazing
thing we were told is that as soon as the actual transplant is done on Sept.
16, her blood type will change to 0+. The donor has very excellent tissue
match with Kenna, but the blood type is different, so she will need a whole
new set of donors to meet her needs for several months at Children's
Hospital until the new bone marrow kicks in. Isn't that incredible?  Thanks
for your prayers and support.

Thursday August 25, 2005

Kenna and Mommy were able to come home from the hospital this morning, with
Mommy acting as nurse until Kenna finishes the course of IV antibiotics. I
spent the rest of the day with the girls while the parents went for a final
consult about the procedures next week. The doctors are required to disclose
all the risks, but feel very confident that the match is so ideal that the
procedure is likely to be quite successful. They suggest a haircut since the
rapid hair loss from the chemo can be rather traumatic. What we anticipate
may be even more traumatic, especially for those who have to try to appease
her midnight appetites, is that our McDonald's-loving patient will not be
allowed to have any "outside" food for 100 days!

Here's the info for those who are able to help with blood and platelets.
A+ needed until Sept 15
O+ needed for several months after


CHOC Blood and Donor Services
Main & LaVeta, Orange

Monday, Tuesday, Wednesday and Friday  9am - 7pm
Thursday 7:30am - 7pm

Must call 714-532-8339 to schedule an appointment

Sunday August 28, 2005

We had a quiet weekend. Kenna remained stable on the IV antibiotics at home.

Adrienne and Chris were working hard to get as many orders completed as they
could. I watched the girls for a couple of hours on Saturday so the parents
could get a little time to themselves before the couple of months of
"lock-up" start on Wednesday afternoon. It was such a lovely day that we
took a walk, with Kenna wearing her protective mask outdoors - willingly and
cheerfully, to my amazement - as she said (like I should have known), "So I
don't get GERMS!"

The hairdresser is coming to their home on Tuesday to give Kenna a short
haircut like Momma's, and to trim Carsyn's for class photos on the first day
of school Wednesday. I'll send photos of the results.
--

Sandi (Adrienne's and Barbara's fantastic stylist)
made a house call to cut Kenna's hair




Kenna shows off her new hairdo to Daddy!

Tuesday, August 30, 2005

Haircut day! Carsyn had a haircut for he 1st day of school pictures tomorrow, and Kenna got a bob to help the trauma when her hair starts to come out from the Chemo...she is worried people (the doctors mostly) wil think she looks funny and laugh at her bald head! We tell her doctors LOVE baldies - that is how they know the medicine is working! Luckily Aunt Helen is making some pretty princess caps for her to wear!

Carsyn and Kenna show off their new haircuts...Taylor is along for the ride.