History

Journal History

Tuesday, July 28, 2009 8:55 AM CDT

Karly turned 14 on June 20th! She continues to do well and enjoy life. Earlier this month she spent a week at Girl Scout camp with 3 of her friends. The highlight of that trip was a tour of the Lost Sea. www.thelostsea.com Karly went there 2 years ago and decided it was so much fun she chose that camp week again this year. This week she is at Camp CARE (cancer camp). Here’s a picture of Karly on her way to camp. Her hair has gotten so long and beautiful, but she usually prefers to wear it in a ponytail so it doesn’t get in the way while she writes. Karly’s been working on a novel since about January and has hundreds of pages written. (It involves vampires of course.) She literally writes for hours every day – either on the computer or in notebooks. Perhaps we have a future author? When she’s not being a nurse that is!

Karly’s headed to 8th grade this fall, her last year of middle school. She’ll be in her 3rd year of Cadette Girl Scouts and will be working on her Silver Award. She’s become quite a little leader – I’m very proud of her!

Karly is still on growth hormones. She gives herself her nightly shots now! After 1 year she’s lost 20 pounds and grown 3”. We hope they get renewed so we can get a little more height before we discontinue them.

Hope you are all enjoying summertime! It’s been a mild one here in the south, so we are trying to take advantage of that. Of course August is still not here yet and I’m sure that will be HOT!

God Bless,
Nancy

Friday, April 10, 2009 11:09 AM CDT

A belated HAPPY 6th REBIRTHDAY to Karly!!! We celebrated by taking cupcakes
to Karly’s science classroom. Even 6 years later this is still a joyous day for us!
We’ll never stop being grateful for Karly’s donor for his gift of life to her!

Karly still wants to be a nurse when she grows up, so for her school’s job shadowing
day yesterday she shadowed the staff at Levine’s Children’s Hospital Pediatric
Hematology/Oncology. She really enjoyed learning about nursing and seeing the
cool new hospital. We appreciated the kindness of the staff in taking such good care
of her. Karly only has to go to see Dr. McMahon every 6-8 months now.

Karly started growth hormone injections in August and has grown 2 ½ inches!! We
are so excited – she’s almost 5’ tall! The nightly shots have increased her blood
sugar some so we have to watch that closely. But otherwise Karly is in terrific health!
Thank the Lord!!!

Love and blessings to all,
Nancy

Friday, June 20, 2008 12:38 AM CDT

June 20, 2008:

Happy 13th Birthday Karly!!!

Our baby girl is a TEEN now! YIKES!! Seriously though, she’s the sweetest teen around. We’re very proud of the young lady she is growing into. Everyone who knows her knows that she is very caring, helpful and funny. She’s an awesome person!!

Karly had a good year in Middle School. She made the AB honor roll all four quarters this year, which for her is an amazing accomplishment. She worked hard! She earned the “Citizenship Award” at school (Les jokingly calls it the “brown-noser award”). Only 1 child per homeroom received it, so it’s a good accomplishment.

Here’s her latest counts:
WBC 9.9
NEUTROPHILS 62.6% (~6200)
RBC 4.79
HBG 14.4
MCV 87.6
PLATELETS 346

WONDERFUL!!!!!!!!!!!!!!!

She had her growth hormone stimulation test last week and we get the results next Wednesday. We’re pretty sure she’ll be put on growth hormones, but we’ll see what Dr. Tomboc says.

Karly is planning a fun summer. She has 1 week at Camp CARE (the oncology camp for Carolinas Medical Center) and Lake Lure, 1 week at Girl Scout Camp and 1 week at Camp Sunshine with the family (FA week) in Maine. She’s spending more time this summer relaxing too.

Hope you all have a great summer!!

Love and blessings,
Nancy

Friday, June 20, 2008 12:36 AM CDT

Friday, January 11, 2008 1:13 PM CST

It’s hard to believe Karly is fast approaching her 5-year “rebirthday” (3/26). The past 5 years since we learned of her diagnosis,
through her transplant, and to today have been full of both enormous pain and great joy. I was thinking back this morning of
how hard it was to see Karly suffer so much. I had daily walks at the City of Hope in the rose garden praying hard for
Karly’s recovery. I can honestly say that those were the time that I felt closest to God - - where His presence was a physical thing.
We feel blessed that Karly’s transplant went so well, and have never forgotten that it was through the prayers of friends, family,
and complete strangers that we got through it all. For some reason 5 years seems like a monumental milestone. And yet
I realize that she’s not cured. But we live life to the fullest and thank God for every day we have with our beloved daughter.

Karly has been doing well in middle school. She made the AB Honor Roll for the first time!! With all her issues, it’s a near miracle
and a testament to her hard work. She LOVES going to multiple classes and has terrific teachers. She’s dreading starting PE
next semester (in 2 weeks) but I’ll work with them to give her modified PE. She also has to take Chorus, but it’ll be good for
her despite what she thinks. We were finally able to get an IEP/504 Plan with the school. Part of what I think has helped Karly
do well in school was the occupational therapy she got over the summer. She may do some more of that next summer!

Her counts are still great, but she has barely grown over the past 6 months. So we’re visiting the endocrinologist a bit sooner
to re-evaluate her growth. Sigh….she wants to be 5’ tall so bad, but I’m not sure that’s what the Lord intended.

Karly got braces on in August. Her teeth are looking so much better! Can’t wait to see that new smile when it’s completed (summer ’09 hopefully).

Other than school and medical appointments, Karly keeps busy with Girl Scouts. She’s enjoying being a Cadette!
If anyone needs cookies, give us a call! J

Thank you all for your love, support & prayers!!
Please support FARF www.fanconi.org to find a cure for Fanconi Anemia!!

Love and Blessings,
Nancy

Friday, January 11, 2008 1:13 PM CST

Friday, January 11, 2008 1:12 PM CST

Friday, January 11, 2008 1:11 PM CST

Friday, January 11, 2008 1:08 PM CST

It’s hard to believe Karly is fast approaching her 5-year “rebirthday” (3/26). The past 5 years since we learned of her diagnosis, through her transplant, and to today have been full of both enormous pain and great joy. I was thinking back this morning of how hard it was to see Karly suffer so much. I had daily walks at the City of Hope in the rose garden praying hard for Karly’s recovery. I can honestly say that those were the time that I felt closest to God - - where His presence was a physical thing. We feel blessed that Karly’s transplant went so well, and have never forgotten that it was through the prayers of friends, family, and complete strangers that we got through it all. For some reason 5 years seems like a monumental milestone. And yet I realize that she’s not cured. But we live life to the fullest and thank God for every day we have with our beloved daughter.

Karly has been doing well in middle school. She made the AB Honor Roll for the first time!! With all her issues, it’s a near miracle and a testament to her hard work. She LOVES going to multiple classes and has terrific teachers. She’s dreading starting PE next semester (in 2 weeks) but I’ll work with them to give her modified PE. She also has to take Chorus, but it’ll be good for her despite what she thinks. We were finally able to get an IEP/504 Plan with the school. Part of what I think has helped Karly do well in school was the occupational therapy she got over the summer. She may do some more of that next summer!

Her counts are still great, but she has barely grown over the past 6 months. So we’re visiting the endocrinologist a bit sooner to re-evaluate her growth. Sigh….she wants to be 5’ tall so bad, but I’m not sure that’s what the Lord intended.

Karly got braces on in August. Her teeth are looking so much better! Can’t wait to see that new smile when it’s completed (summer ’09 hopefully).

Other than school and medical appointments, Karly keeps busy with Girl Scouts. She’s enjoying being a Cadette! If anyone needs cookies, give us a call! J

Thank you all for your love, support & prayers!! Please support FARF www.fanconi.org to find a cure for Fanconi Anemia!!

Love and Blessings,
Nancy

Friday, January 11, 2008 1:06 PM CST

It’s hard to believe Karly is fast approaching her 5-year “rebirthday” (3/26). The past 5 years since we learned of her diagnosis, through her transplant, and to today have been full of both enormous pain and great joy. I was thinking back this morning of how hard it was to see Karly suffer so much. I had daily walks at the City of Hope in the rose garden praying hard for Karly’s recovery. I can honestly say that those were the time that I felt closest to God - - where His presence was a physical thing. We feel blessed that Karly’s transplant went so well, and have never forgotten that it was through the prayers of friends, family, and complete strangers that we got through it all. For some reason 5 years seems like a monumental milestone. And yet I realize that she’s not cured. But we live life to the fullest and thank God for every day we have with our beloved daughter.

Karly has been doing well in middle school. She made the AB Honor Roll for the first time!! With all her issues, it’s a near miracle and a testament to her hard work. She LOVES going to multiple classes and has terrific teachers. She’s dreading starting PE next semester (in 2 weeks) but I’ll work with them to give her modified PE. She also has to take Chorus, but it’ll be good for her despite what she thinks. We were finally able to get an IEP/504 Plan with the school. Part of what I think has helped Karly do well in school was the occupational therapy she got over the summer. She may do some more of that next summer!

Her counts are still great, but she has barely grown over the past 6 months. So we’re visiting the endocrinologist a bit sooner to re-evaluate her growth. Sigh….she wants to be 5’ tall so bad, but I’m not sure that’s what the Lord intended.

Karly got braces on in August. Her teeth are looking so much better! Can’t wait to see that new smile when it’s completed (summer ’09 hopefully).

Other than school and medical appointments, Karly keeps busy with Girl Scouts. She’s enjoying being a Cadette! If anyone needs cookies, give us a call! J

Thank you all for your love, support & prayers!! Please support FARF www.fanconi.org to find a cure for Fanconi Anemia!!

With love,
Nancy

Monday, June 25, 2007 8:36 AM CDT

Karly turned 12 last week!! She had a perfect birthday week. She attended Geology Camp at the Schiele Museum where she got to go into a gold mine, visit Mount Mitchell, visit a quarry, and other places where she learned about geology in the Carolinas. She also got to add significantly to her rock collection! On her birthday (Wed June 20th) she hung out with her girlfriends and had a blast that night! For her surprise present from us, we got her 2 tickets to the Toby Keith concert – her favorite singer since she was 4. The concert was Friday night! A local radio host (Paul Schatt) got us 2 backstage passes to meet Toby!! Karly was in heaven all night!! Her picture with Toby is on the photo album page.

We got some good news last week! Karly’s Pediatric Endocrinologist told us Karly was 55.2" (4’ 7.2”) and her bone age read at 10.25. Since she is maturing slowly (younger bone age than chronological age) she reanalyzed the data now thinks that Karly will be 5' tall!! YEAH!!! That means she does NOT need growth hormone shots! Karly is so happy!

Next week Karly goes to Camp Care, the Carolinas Medical Center Pediatric Oncology camp. She’ll enjoy a week at Lake Lure just being a kid. The day after she gets back she goes to Girl Scout camp where she’ll get to visit the Lost Sea in Tennessee – the largest underground lake in America! She’s really enjoying her summer so far!

I never updated her site with her counts from May, but they were all in the normal range with platelets at 357k. Her health is excellent!! We’re working with an occupational therapist to improve Karly’s coordination and mental processing speed in a program called Interactive Metronome www.interactivemetronome.com . The therapist discovered an issue with Karly’s left eye that we’ll have to address down the road. Otherwise Karly is doing just fine thank the Lord!!

Thank you all for your love, support & prayers!! Please support FARF www.fanconi.org to find a cure for Fanconi Anemia!!

Nancy

Monday, May 21, 2007 12:14 AM CDT

Karly will be 12 in less than a month. She sees Dr. McMahon Friday for her every 6 month checkup. Nice to not worry about her counts anymore! Just living life to the fullest!!

Karly graduates from Elementary School tomorrow! Middle School here she comes!! I'll update with this week's excitement on Friday night with her counts.

God Bless everyone!
Love,
Nancy

Friday, April 13, 2007 8:15 AM CDT

Our Girl Scout Science Fair Bronze Award Project was a success!! Karly had a project called "How A Bone Marrow Transplant Works". It was a good experience for she & I to work through this together so that she could understand her disease and transplant better. We educated some people and spread the word about FARF.

Spring is here!! Karly is still doing well and enjoying life. She just returned with her brother from a week in California. It was her first time back there since we moved 20 months ago. She LOVED seeing some of her friends. Because it was such a short trip there were many more people she would have liked to have seen but couldn't. So we're hoping to send them back late this summer.

Please keep our friend John Smith in your prayers!!

God Bless,
Nancy

Friday, February 2, 2007 9:46 PM CST

Yesterday was our first SNOW DAY!!! We had fun sledding
for hours! We live on a hill so we just had to walk out
our front door to slide down the hill. The kids had a
blast! Our 4" was completely melted today but it was
great while it lasted.

Karly is doing very well!! Her counts are perfect and she
has been healthy this winter. We are truly blessed and I
thank God every day!!

Love to all,
Nancy

Friday, December 8, 2006 12:54 AM CST

Here's our Christmas letter for 2006:

Best wishes to you and your family this wonderful Christmas season! Its late November and most of the leaves are off the trees. The days are getting colder and Christmas decorations are appearing, so it must be time to write our letter again. It has been a good year at the Ross household and we pray its been one at yours as well. We’ve enjoyed our first full year as South Carolinians! Although fall is spectacular with the blaze of colors, its nothing compared to springtime in the south. WOW!! Cherry and pear blossoms, dogwoods, wisteria, redbud, rhododendrons & more shades of green than anywhere on the planet! So Nancy is trying to garden a bit and Les is making improvements to the house. He doubled the size of the deck and built the dogs a taj majal of a doghouse. Speaking of dogs…

We’ve added to our family this year!! The kids got Bentley, a beagle/
walker hound mix for Christmas. We figured he got lonely during the day, so we got Mercedes (Sadie), a golden retriever/lab mix to keep him company. They are great dogs! The kids have so much fun with them and they’re a big part of the family now. Bentley is a typical hound and likes to make noise! We took him to puppy training but he’s still a little rascal sometimes. Sadie is the super smart alpha dog. She taught Bentley how to climb our 6’ retaining wall to go run & play in the woods. So now the electric fence keeps them in their 24’ x 24’ dog yard. Jasmine the cat isn’t much impressed with the dogs so she stays in Karly’s room most of the time. We lost our rat Rascal in the spring to a tumor (she had journeyed across country with us) so we got Karly 2 new rats this fall – Cinnamon & Cocoa. Kyle still has his Kenyan Sand Boa “Tremors”. We’ve also added a ton of fish, so I think we have enough pets now!

We were hoping for a white Christmas last year, but the only snow we got was a dusting in early February. We woke the kids up at 5:30 to see it, which was good because it was pretty much gone by morning. Perhaps this year we’ll get enough to play with at least once. But not TOO much!!

While trying to get settled in our new home we did manage to go on 2 trips this year. In July we drove to Maine for the Fanconi Anemia Family meeting at Camp Sunshine. We got a chance to drive through 13 states and see a lot of the northeast. Les was a maniac driving 928 miles the first day – almost making it the whole way! We went through the Shenandoah Valley on the way up and took I-95 on the way home so that we could see different areas of the country. We’ll pass on the 95 and New Jersey next time! In November we drove to Williamsburg Virginia to celebrate Nancy’s Aunt Jeanette & Uncle Martin Baxter’s 50th wedding anniversary. Most of the family (Aunts, Uncles, Cousins, etc) were there so it was a very special and memorable occasion! Uncle Harold Crocker presided over their wedding 50 years ago and was there to bless their vow renewals, while Cousin Pastor Rick conducted the ceremony.

Papa & Grammie (Dad & Ilze) are doing very well! They were able to visit again in Sept for a couple of weeks. It had been a long 10 months since the kids had seen them. We had a great time during their visit. They also came out for Dad’s sister Jeanette’s anniversary. We hope they can move out here so we can see them more often ‘cuz we really miss them!

KYLE turned 16 this year and is a Junior at Fort Mill High. He’s still adjusting to life in SC but doing fine. He started dating a nice girl named Morgan and they’ve been going out since April. For his birthday his grandparents bought him a bass guitar! He and some of his friends have formed a rock band, “For Her Alone”. Kyle is still really into drama and is taking it in school and performing in plays. This fall he was is the play “Miss Nelson is Missing”. He’s recently discovered photography and likes to experiment with digital cameras. He’s definitely right-brained being into drama, art, music, movies & photography. He’s interested in a career in either Criminal Justice or Business. He’s learning to drive!

KARLY is doing well 3+ years post-transplant! Her blood counts are terrific and she continues to be our miracle child. She’s adjusted very well to life out here. This year she turned 11 and is now in the 5th grade. She’s in her third year of Junior Girl Scouts with a vest full of patches. This year Karly & Nancy went to the Mother-Daughter campout in the mountains and Kids Life Camp at Ridgecrest. On September 10th Karly was baptized in Lake Wylie!! She has also started horseback riding lessons and drama classes through Charlotte Children’s Theatre (perfect for our little drama queen!). She spent the summer enjoying swimming in Lake Wylie and at Girl Scout day camp. Since Karly is finally tall enough to ride the big rides we went to Carowinds Theme Park a lot! The girl has no fear!

LES is still working for Eastwood Homes and really enjoys his job. It’s a good company and he has lots of potential there. He’s really proud of developing their Customer Service Dept. from the ground up and greatly improving their customer service ratings. He gets out fishing when he can but still pines over his boat. Les has done a lot around the house – painting the entire interior, building the deck and doing landscaping. There’s always more to do! He’s really enjoying our aquariums and watching the fish. He has his aggressive (cichlid) tank and community fish tank.

NANCY is still working for the City of Gastonia in the Planning Department. This year she got to expand beyond her usual GIS duties and worked with developers on 3 rezoning issues including making presentations to the Planning Commission. She also participated on a Planner’s Mentoring panel talking to college students about the Planning & GIS profession. She got to go back to San Diego for a week for the ESRI conference in San Diego but there wasn’t enough time to see as many people as she’d like. She’s still busy with Girl Scouts (15 in the troop now). Nancy went through some physical therapy this fall to help her hip - getting old sucks! She gets out for bunco or scrapbooking when she can.

May the Lord bless you and your family in the New Year!! Keep in touch – we love hearing from you!!

Les, Nancy, Kyle & Karly Ross

Monday, September 11, 2006 8:00 AM CDT

Today is a solemn day in the United States - and though we mourn too and remember what happened, we also celebrate!! Karly was baptized yesterday in Lake Wylie at our church picnic. She gave her testimony (below) and was immersed in the lake. We were so proud of her!!! She is and has always been a blessing. We were told I wouldn't carry her (I'd have a third miscarriage in 8 months) and God promised me no, I'd have a girl. When I was 12 weeks pregnant a 4 year old Kyle came to me and said "Jesus told me I was getting a sister". (Oh Lord I thought, it'd better be a girl!) When she was born prematurely we were worried but she was healthy and strong but always small (5lb 3oz at birth and 11lbs at age one). Before she started Kindergarden we were told she had ITP, which explained the low platelet count (but was WRONG). Eventually we got the FA diagnosis October 25, 2002 and so many things fell together. Now four years later Karly has had a successful bone marrow transplant, is a wonderful young lady who is thoughtful, respectful, has the most excellent attitude and I could not ask for a better kid. We are truly blessed by this gift from God. During her transplant I wondered why God would give me this wonderful child just to possibly take her away, but I gave my faith to the Lord that He would bring us through this. He has been faithful beyond my wildest dreams!! I am so proud that Karly is now serving Him as best she can understand what that really means.

Karly’s Testimony

My mom has taken me to church all of my life, but I was still a sinner because everybody is a sinner!

One Sunday in November 2002 at church the Pastor asked if anyone wanted to ask Jesus into their hearts and I raised my hand. We prayed a special prayer together and I asked Jesus to come into my heart and forgive my sin. That means I’m a Christian and now I get to go to heaven. That happened when I was 7.

A few months later I had a bone marrow transplant and I know that Jesus saved me during the transplant because He has something wonderful planned for my life. Lots of people were praying for me. I’m so glad Jesus is my friend and helps me with everything in my life. Now I’m 11 and I’m getting baptized today because I want to show everyone that I want to serve Jesus.

My favorite verse is Luke 6:31 “Do to others as you would have them do to you” because it teaches us how to be nice.

Have a blessed day!!
Nancy

Wednesday, August 23, 2006 9:43 AM CDT

~ +41 months
~ +1,240 days
:)

Karly is enjoying life these days. That is as it should be!!
Since our last update, we have been busy. We DID go to
Camp Sunshine and has a great time! All four of us got to
go this year, so I felt complete for a change. Kyle made
some friends in the teen group and really enjoyed himself.
Les spent some time fishing and catching frogs. I learned
a little more about Fanconi Anemia and renewed friendships
or made new ones. Over 3 years post-transplant you feel
a little more secure about your child’s future, but I still
kinda am waiting for the other shoe to drop. But there is
no denying that Karly is well and life is good right now. So
I have lots to praise the Lord for!!!

Karly returned to school a couple of weeks ago and is in the
5th grade. Her new teacher seems very nice! One of her best
friends is in the class so Karly is happy about that. Plus
of course she is making new friends as always!!

We cut off about 6 more inches off Karly’s hair right before
school started. It hurt me at first, but I really like the way she
looks. Its much easier to take care of too. Its strange how
her hair is so emotional to me.

Girls Scouts is back in session so that’s keeping me busy.
Karly is a third year Junior but will wait another year before
becoming a Cadette so she can bridge up with her troop.
We went to camp last week and had a great time but after
traveling half the summer, I’m ready to stay home for a while!

We had a scare with one of our dogs over the weekend. Sadie
had to go to the Emergency Vet because she was so very sick.
But thank GOD she is doing better! I’ve had enough of medical
stuff in the past 3 years.

Please keep Matt, Alex & Ryan in your prayers as they recover
from their transplants. Also please pray for Taliah Woods’ family
as they cope with her death from FA. This disease stinks and
we need to find a cure!!!

Love and blessings,
Nancy

Friday, July 7, 2006 3:54 PM CDT

Karly went to the pediatric hematologist today (Dr. McMahon). She got her first blood test in 8 months! As expected, they were GREAT!! Here's her (approx.) before transplant and today's numbers:

Before: Today:
wbc 1.2 9.3
rbc 2.3(?) 4.65
hgb 8.2 13.8
mcv 102 85.4
plat 13 366
neut <500 5400

Thanks to her anonymous donor and his SUPER MARROW!!!

Karly went to work with me today and she was a joy! I was so proud of her!! She was quiet, never bothered me while I was frantically putting together Planning Commission packets and helped out where she could. She's really growing into quite a wonderful young lady!!

We're crossing our fingers about Camp Sunshine....I got my paperwork in late so we're on a waiting list. I'll be SO BUMMED if we can't make it!

Summer is flying by. We had a nice Fourth of July and shot off lots of fireworks at our home. I have been pretty nervous around them (back in Calif they are illegal and here in SC they are legal) but I'm getting used to them. Karly shot off some roman candles but doesn't like the sparklers. She's happiest just watching. Kyle on the other hand is a typical teenage boy that likes to blow things up!! He and his buddies had a blast!!

Hope you are all enjoying your summers. Praying for high counts for everyone and a healthy rest of the summer!!

God Bless,
Nancy

Monday, July 3, 2006 8:22 AM CDT

Happy (early) Fourth of July!! Hope you all have wonderful celebrations
and remember why we are celebrating!! Now that we live in South Carolina
we can blow lots of things up – fireworks that is! Fireworks have been
illegal in California for decades but they are everywhere here. Les & Kyle
bought about $100 worth which will keep them busy for days. I worry about
safety, so I still to sparklers myself. We’re giving thanks for our freedoms!

Karly is doing great! The new homepage picture was taken in front of the
Church office 7/2. We’re enjoying the summer so far. Karly went to Girl Scout
day camp for 2 weeks and had a blast! She’s off this week and next but is
looking forward to Camp Sunshine in a couple of weeks. We’ll be driving the
1000 miles each way and seeing parts of the country we have never seen before.
We’ll do the inland route on the way up and the 95 coastal route on the way
home. Wish gas prices were cheaper, but it’ll be worth it!

Karly sees her hematologist/oncologist Dr. McMahon on Friday. Its been
EIGHT MONTHS since her last blood test!!! I have tried not to worry about
going so long but Karly sure appreciates the break! I’ll post her counts when
I get them.

Blessings to all!!
Nancy

Tuesday, June 20, 2006 8:18 AM CDT

HAPPY BIRTHDAY KARLY!!!!

Our baby is 11 now.

YIPEE!!!!!!!!

We Love You!
Mom, Dad, Kyle,
Bentley, Sadie & Jasmine

Tuesday, March 28, 2006 11:46 AM CST

+3 Years

Karly celebrated her 3rd REBIRTHDAY on Sunday March 26th.
Its hard to believe its been THREE YEARS!! What an amazing
journey. We’ve been blessed with a relatively smooth transplant
and recovery. Although it was painful, difficult and emotionally
and physically draining, the end result of a HEALTHY KARLY
was well worth it! Thank you all for your prayers over these
past few years. YOU made the difference! The Lord brought us
through this and your prayers lifted us up!

We celebrated by spending the (cold) day at Carowinds theme park.
Kayla and Will (who has FA) were able to join us. We had fun riding
all the roller coasters – so nice since we don’t have to worry about
platelets anymore. She is just a tad too short to ride the big 3 rides,
but paranoid mommy is kinda glad!

Yesterday I went to Karly’s classroom to bring snacks and talk a
little about her transplant. She was nervous and embarrassed about
what I was going to say, but it turned out great. The kids liked the
food and now they know a little more about Karly. Sometimes I
just want to scream “SHE’S SPECIAL” to everyone out here who
doesn’t know her! After school we went to see “Aquamarine” and
had dinner at Cracker Barrel. It made for a fun 2 day celebration.

Spring here in the south is beautiful! The trees are full of their new
flowers and leaves. The Bradford Pears are the first sign of spring,
and then the Cherry Trees bloom – wow! I miss the green and am
ready for SPRING!

Please pray for the family of Maria who lost her battle with FA on
Friday, and pray for all the kids still struggling with this dreadful
disease.

Blessings to all,
Nancy

Tuesday, February 14, 2006 1:21 PM CST

Happy Valentine’s Day!!

We’ve been in South Carolina 6 months now. We still get homesick,
but it’s feeling more like home every day. We love it here and know
we made the right decision, but it’s still hard sometimes. Karly is having
fun in Girl Scouts and making friends slowly. She’s such a great kid, its
hard for me to watch her miss her California friends. We’re enjoying the
winter here, and FINALLY got some snow. Just a tiny amount, but it
was enough to make the crew happy.

We just got Karly a new puppy. For Christmas we bought the kids a
Beagle/Walker Hound mix named Bentley (for his bent tail). He’s an
awesome dog, but he was kinda lonely during the day while we were
away, so we got him a friend. Her name is Mercedes (Sadie) and she is
a Golden Lab. I’ve put pictures up of them. Karly is so excited about
having a girl puppy. Her cat is not thrilled with the extra dog, but she
mainly stays in Karly’s room so she has her own kitty space. Karly’s
pet rat Rascal that we brought all the way across country is not doing
well. Her tumor is HUGE and she is getting skinny. It will be a sad day
when Rattie passes on.

We’re getting used to the medical system out here. So far the 3 doctors
we’ve seen for Karly have been terrific!! We miss Kaiser a LOT but so
far the medical care she is getting here is sufficient. I am just having trouble
with deductibles (i.e. learning the system!) since I never had to worry about
that with Kaiser. Karly needs a bone age test to determine if she can start on
growth hormones. I have to get that done soon!

Hope everyone out there is happy and healthy! Please continue to keep us
and other kids and families struggling with FA in your prayers.

Love and blessings,
Nancy

Wednesday, December 21, 2005 3:20 PM CST

33 months ;)

MERRY CHRISTMAS & HAPPY NEW YEAR!!!

Wishing you all HEALTH, PEACE and LOVE this
Christmas season!!

Karly is doing really great! J Her counts are still
perfect and the doctors are really pleased with her.
My greatest comfort has been that we really love
our new doctors out here! Karly is now going to a
new endocrinologist who will be doing some testing
to see if Karly really needs to be on growth hormones.
The nurse there was able to get blood out of Karly’s
arm instead of hand, so she was so happy! Her poor
veins are shot due to years of testing.

This will be our first Christmas in our new home and
my first one without my parents. Its kinda sad, but
we’re trying to make the most of it by starting new
traditions. We are so greatful to God for Karly’s
continued good health and for His provision for
our family!!

Have a holly jolly Christmas!!

Love,
Nancy

Tuesday, November 15, 2005 8:39 AM CST

Long overdue update!

Karly got her first CBC since we left California last week. Her counts are awesome:

White blood cell (wbc) 10.1
Red blood cell (rbc) 4.72
Hemoglobin 14.2
MCV 86
Platelets 337,000

Her neutrophils were the only abnormal count (61%) but that’s close to normal
and reflect her slightly higher than usual white count (perhaps she was fighting
something?)

We like the new family practice clinic (but we really miss Kaiser!). We see
Dr. McMahon the hematologist in 2 weeks at the Blumenthal Cancer Center at Carolinas Medical Center. He’s Will Lackey’s doctor too and Kayla says he’s great so I’m
looking forward to meeting him. I’ve pretty much relaxed about her FA but in the
back of my mind the “C” word is always there.

The fall color show is almost over but it sure was worth the wait! Our street is lined
with Japanese Flame Maples, so the contrast of the green grass with the red leaves was
spectacular. The woods behind our house was a rainbow of color for weeks, giving
us exceptional views from our windows. I took some pictures that I’ll post as soon as
I get them developed. One picture shows how long Karly’s hair has gotten. It still has
a lot of lovely curl but I straightened it for a day to see how long it was.

Karly loves her new school and is making lots of friends. The new Girl Scout troop
is going well (but we miss our old friends so much!). Karly’s cat is getting big!! Poor
Jasmine the cat gets fixed this week. Karly has proven to be a very good kitty mom
and takes excellent care of her cat. We now have a rat, cat, bunny, snake & large
aquarium - - its a regular zoo here!

We are thrilled to have Karly’s grandparents here for 3 weeks visiting from California.
They are what we miss the most about out there. We’re enjoying getting all the
family together! We had an Open House at our house for our family last Saturday and it
went very well with over 30 people there. It was so great to see cousins I hadn’t see
in years and let the kids meet them. Our house is 95% complete (decorations and
unpacking) , so for being here only 2 ½ months we’re doing great!!

Thank you for your continued prayers and support. Please pray for 2 FA kids going
through transplants right now – Ryan and Robbie, and for Maria who is sick right now.
Also please pray for my friend Midge who is facing a transplant in a couple of weeks
for cancer.

God Bless Y’all!!!
Nancy Ross & the Ross Family

Wednesday, August 24, 2005 2:40 PM CDT

We finally moved into our new home!! There's so much to do
in setting up a new household - it sometimes feels like
I'll never get it all done. But things are going well and
we're really happy here. Now that things are settling down
I can be better at keeping in touch with friends and
monitoring how our FA friends are doing.

Karly loves her new school and teacher. She sure will learn
a lot this year!! I'm very impressed with the school and
know that Karly will flourish there. Its so nice not to
have to worry about FA along with everything else involved
with a major move. She gets to see her new hemo in November
but for now I'm not even thinking about counts!

The new picture on her home page was taken at the City of Hope
at the annual "Celebration of Life" BMT reunion. Hard to
believe she is now 29 months post-transplant. We are
so blessed!!!

Love to all,
Nancy

Monday, August 15, 2005 12:15 AM CDT

LONG AWAITED UPDATE!!!

Sorry its taken so long to update Karly’s website. We left San Diego a week
late, so we didn’t get to go see Les’ family or take the scenic route. Instead we
mad a “mad dash” across country to get here. We made it safely from California
to the Carolinas!! Here’s the story of our trip:

We left Santee on Saturday July 30th at 12:30pm and arrived in Tega Cay, SC at
8pm on Tuesday August 2nd. We drove from Santee to Flagstaff the first night and
discovered that there are no hotel rooms within 200 miles of the Grand Canyon
available (summer – duh!). So we slept in the truck in the WalMart parking lot.
Definitely the low point, but at least we can kinda laugh about it now. The second
day we drove from Flagstaff to the lovely little hole in the wall called Shamrock
Texas (at the Irish Inn). It was the Ritz compared to the Walmart parking lot!
Anyway, day 3 was from Shamrock to Jackson, Tennesee. We had dinner at the Old
Country Store restaurant right next to the Casey Jones Train Museum (yum!).
Finally on the last day we made it through the rest of Tennesee and over the mountains
to our new home. There were some harrowing moments for me driving my husband’s
big truck pulling the tent trailer over the Smoky Mountains (I learned to hate truckers
on this trip!) but we survived. The kids enjoyed the trip watching our new dual-screen portable DVD player and seeing America from 70 mhp. We’re blessed they both travel
so well. Karly learned about Cracker Barrel’s and sweet tea (which she loves). We’ve been camping out at the local KOA for 2 weeks until our house closes Friday but we’re making thebest of it. The kids started school Aug 5th and I started work Aug 8th. Phew!!!

People in the south are definitely more friendly and hospitable. We like it a lot so far.
We’re definitely not in California anymore – they still allow smoking in a lot of places
(remember smoking/non-smoking sections in restaurants?). The pace is slower and
people are not in a hurry to get things done as a general rule. That will take a lot of
getting use to for me! But everything is beautifully green and the weather is not so bad.
The rain here is pretty serious stuff – not the little sprinkles we’re used to. When you
can see it coming and a drop makes a 3” splatter its scary. But the nightime lightning
is so pretty to watch. The bugs here are so loud! At the campground the katydids are
a constant shrill (like an electic line) until the birds come though and eat them, then the
birds are loud! But Karly was thrilled to see and catch her first lightning bug – it was
really cool! The kids’ school facilities are so nice (everything is new, indoors, large
and well stocked) and their teachers are excellent. I think they’ll both do really well.
The funny thing is they are both learning Spanish right now. We had to leave San Diego
for the kids to learn Spanish (and with a southern accent its kinda funny sounding).

My first experience with Mexican food here was HORRIBLE but today I had some decent fajitas so not all is lost. I’ve made it my personal mission to discover the best
Mexican food in the Peidmonts! ;)

We bought annual passes for Paramount’s Carowinds Theme Park, so I guess we’re
staying! It was pretty miserable standing in line in 94 degree, 80umidity weather,
but it made the water park part that much more fun!!

So far I think I’m the only one to get homesick, but I’m sure it’ll take some time to
acclimate to everything here. Karly LOVES her new teacher, has her girlfriend in her
class, and of course has made many new friends. We’re looking forward to Girl Scout
starting and the weather to cool down a bit. We found a doctor for Karly, the same one
as Will (Kayla’s son) so I’m satisfied with that.

Well, I babbled enough for now. Please keep in touch and email us at our new address:
Karlysmom2@yahoo.com

God Bless!!!
The Ross Family

Tuesday, June 21, 2005 1:37 AM CDT

JUNE 20th 2005 -

H A P P Y 1 0 t h B I R T H D A Y K A R L Y ! ! !

Its nearly midnight in California and we just finished celebrating a wonderful day - my baby is 10 now!! She's a walking/talking miracle. The party was really fun and you had a perfect day.

We love you,
Mom, Dad & Kyle

Tuesday, March 15, 2005 10:10 AM CST

2 YEARS POST-TRANSPLANT (almost)

Karly went for her 2 year post-transplant checkup yesterday. WOW!! Its hard to believe its been 2 years (her actual re-birthday is March 26th). She is doing so well!!! Praise the Lord!!!! Her counts were awesome…

6.1 white (50% neutrophils – that means a strong immune system!)
14.1 hemoglobin
457,000 platelets

OH HAPPY DAYS!!!

Karly was sick with Fifth Disease 2 weeks ago. She missed a full week of school (including a field trip and father-daughter dance). She had a fever for 5 days with extreme lethargy and no appetite. The rash she got on the last day of fever covered her body but luckily only lasted 6 days so she looked great for picture day last Thursday. The CBC she got during the illness scared me a bit – her platelets “dropped” to 259,000 which was the lowest it had been since the transplant. Thank goodness she’s all better now and her counts bounced back! Apparently, the Fifth Disease virus (parvo virus, not like the dog parvo virus) suppresses the marrow. Her super marrow overcame it!!!

I have to thank GOD, Dr. Falk, the City of Hope, and all of YOU for keeping Karly in your prayers. We have so much to be thankful for….and I count your friendships and prayers high on the list of our blessings!!!

With love and gratitude,
Nancy and family

God began doing a good work in you, and I am sure He will continue it until finished when Jesus Christ comes again. Phil 1:6

Monday, February 14, 2005 6:50 PM CST

HAPPY VALENTINE'S DAY!!!

Hug the ones you love today and
tell them how much you love them!!

Karly is doing well. We went whale watching with our Girl Scout troop
yesterday. It was a lovely day on the sea! Didn't see a lot of
animals this trip but it was great just to be out there.
Karly is the cookie queen of her troop - she sold 617 boxes!!

Karly had her orthodontic consultation last week - it looks
like she'll be getting braces soon!

God Bless,
Nancy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This song reminds me of how much more we value life
after all we've been thru with Karly.

Life Means So Much
By Chris Rice

Every day is a journal page
Every man holds a quill and ink
And there's plenty of room for writing in
All we do is believe and think
So will you compose a curse
Or will today bring the blessing
Fill the page with rhyming verse
Or some random sketching

Teach us to count the days
Teach us to make the days count
Lead us in better ways
That somehow our souls forgot
Life means so much
Life means so much
Life means so much

Every day is a bank account
And time is our currency
So nobody's rich, nobody's poor
We get 24 hours each
So how are you gonna spend
Will you invest, or squander
Try to get ahead
Or help someone who's under

Teach us to count the days
Teach us to make the days count
Lead us in better ways
That somehow our souls forgot
Life means so much
Life means so much
Life means so much

Has anybody ever lived who knew the value of a life
And don't you think giving is all
What proves the worth of yours and mine

Monday, January 3, 2005 7:42 PM CST

HAPPY NEW YEAR!!!

A week ago Karly went to see Dr. Falk in Los Angeles. Her counts were
the best ever! Here's a sample:
6.8 white
14.2 hemoglobin
299,000 platelets

the only abnormal count was the platelet size which was still a bit small
but that's completely normal. YEAH!!! She only had to get 1 immunization
so that was good AND she doesn't have to go back for 3 months. YIPEE!!!!

We hope you had a wonderful Christmas and we wish you the very best in the new year!!

All our love,
The Ross Family

<>< <>< <>< <>< <>< <>< <>< <>< <><

EXCEEDING GREAT AND PRECIOUS PROMISES 2 Peter 1:4

Never again will I confess I can't, for "I can do all things through Christ which strentheneth me." Phil. 4:13

Never again will I confess lack, for "my God shall supply all my need according to His riches in glory by Christ Jesus." Phil. 4:19

Never again will I confess fear, for "God hath not given us the spirit of fear; but of power, and of love, and of a sound mind." 2 Tim. 1:7

Never again will I confess doubt and lack of faith, for "God hath given to every man the measure of faith." Rom. 12:3

Never again will I confess defeat, for "God always causeth us to triumph in Christ." 2 Cor. 2:14

Never again will I confess the supremacy of Satan over my life, for "greater is He that is in me, than he that is in the world." 1 John 4:16

Never again will I confess lack of wisdom, for "Christ Jesus is made unto us wisdom of God." 1 Cor. 1:30

Never again will I confess the domination of sickness over my life, for "with His stripes we are healed," and "Jesus Himself took our infirmities and bore our sicknesses." Isa. 53:5 Matt. 8:17

Never again will I confess worries and frustration, for "I am casting all my cares upon Him for He careth for me." 1 Peter 5:7

Never again will I confess bondage, for "where the Spirit of the Lord is, there is liberty," and "my body is the temple of the Holy Spirit." 2 Cor. 3:17 1 Cor. 6:19

Never again will I confess condemnation, for "there is therefore now no condemnation to them which are in Christ Jesus." Rom. 8:1

Never again will I confess I am alone, for the Lord said, "I will never leave you or forsake you." Heb. 13:5

-- This message has been credited to Neil Anderson's devotion at crosswalk.com

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Wednesday, December 22, 2004 3:30 PM CST

MERRY CHRISTMAS
AND HAPPY NEW YEAR! ! ! ! !

Best wishes from the Ross Family
Les, Nancy, Kyle & Karly

Sunday, December 5, 2004 10:51 PM CST

Karly saw her Cardiologist last week and he said that she is doing perfectly fine
and doesn't have to come back for a year! He did a brief echocardiogram and the
PDA was completely closed. Her heart looked great!!

Karly also saw her ped endocrinologist. We've decided to hold off
on her growth hormones for now. He calculates that she should be
4'10" at full height. Since her growth hormone level is NORMAL,
she's a really borderline case. She we're using the gift of time to
check her bone age and see if she starts menses early. I'm kinda
bummed, but is it worth it to give her daily injections for 6+ years
just to give her an extra 2" in height? So we pray, wait & see!!

We're getting ready for the holiday season. I'm so behind!
I'm almost done with my Christmas letter, but am waiting on some pictures
being developed. I have a few present purchased but nothing wrapped.
Normally by this time I have almost everything bought and wrapped!
So it looks like another hectic season. As always I'll say that next
year I'll do better. I found the website www.flylady.com so now
I have some tools to make next year's holiday more peaceful.

Best wishes to your families for a happy and healthy holiday!!

Love,
Nancy & the Ross Family

Thursday, November 11, 2004 7:27 PM CST

We're back from Karly's heart surgery. We got to LA at 7:15am (we left San Diego at
4:45 so we made good time!). They took her downstairs at 10am and took her in for surgery
at noon. To make a long story short we didn't get home until 3pm TODAY!! They had to
give her so much versed (in combination with the dye used to view her heart) that she threw
up for 10 hours after surgery. So they had to admit her overnight in pediatric ICU. It was
a long long day. We had no change of clothes or anything since we weren't expecting to stay
overnight! (What kind of scout mom am I not being prepared?!) Anyway, they were able
to put the spring in and close her PDA. She went through the procedure itself with flying
colors and its all done now. She might return to school tomorrow but I think I'm going to
keep her home until Monday just to be sure. She has a large bandage covering the incision
on her inner-upper thigh.

Karly as usual went through it all with a good attitude and plenty of spunk.
Thanks for all your prayers!!!

Please pray for the German family - Zachary is heaven's newest angel.
www.caringbridge.com/va/zacharygerman so sad....

God Bless,
Nancy

Friday, November 5, 2004 6:10 PM CST

Day ~588

The wedding was beautiful!! It was a perfect day!! Everything was wonderful. What
A blessing that my dad found Ize – they are so happy together! Now I have 2 sisters
And 3 new nieces/nephews. I’ve added some pictures from the wedding here.

Karly’s heart surgery is scheduled for November 10th. It should be a nice simple thing
but I’d appreciate prayers anyway!!

We saw the audiologist & ENT doctors last week. Karly’s hearing is normal (on the low
end of normal for some tones) but she’ll get tested again in 2 weeks. Her ears haven’t
fully healed yet (she had a cold the day of the appointment), so he put her on flonase
and will see her again in 6 weeks.

Karly’s pediatric endocrinologist agreed to put Karly on growth hormones. He’s meeting
with other specialists next week to run it by them and then we’ll set it up. The decision
comes down to is a full grown height from 4’6” to 4’11” good enough? For her quality
of life I think its worth a shot.

Knotts Berry Farm was fun! I was proud of myself – I went on the new ride Xcelerator
before my husband did! It shoots you off from 0 to 83 mph in 2.3 seconds. What a
thrill!! We got to meet my nephew’s fiancée and spend a great weekend together.

Thanks to all the Bush voters!! Karly thanks you too!!! What a relief!

Love and blessings,
Nancy

THE KINGDOM WORTH DYING FOR -----
by Max Lucado

In my closet hangs a sweater that I seldom wear. It is too small. The
sleeves are too short, the shoulders too tight. Some of the buttons are
missing, and the thread is frazzled. I should throw that sweater away.
I have no use for it. I'll never wear it again. Logic says I should
clear out the space and get rid of the sweater.

That's what logic says.

But love won't let me.

Something unique about that sweater makes me keep it. It has no tag
because it wasn't made in a factory. It has no label because it wasn't
produced on an assembly line. It's the creation of a devoted mother
expressing her love.

And though the sweater has lost all of its use, it has lost none of its
value. It is valuable not because of its function, but because of its
maker.

That must have been what the psalmist had in mind when he wrote, "you
knit me together in my mother's womb." (Psalm 139:13)

You aren't an accident. You were deliberately planned, specifically
gifted, and lovingly positioned on this earth by the Master Craftsman.

"For we are God's workmanship, created in Christ Jesus to do good
works, which God prepared in advance for us to do." (Ephesians 2:10)

In a society that has little room for second fiddles, that's good news.
In a culture where the door of opportunity opens only once and then
slams shut, that is a revelation.

Jesus told John that a new kingdom was coming-a kingdom where people
have value not because of what they do, but because of whose they are.
_______________________________
from The Applause of Heaven
Copyright 1996, Max Lucado

Tuesday, October 19, 2004 1:41 PM CDT

Day +571

IT’S RAINING!!! After 182 of record setting drought, we’ve been getting rain for the
past 2 days. Of course southern Californians don’t know how to drive in the rain. It took us 4 hours to get to Los Angeles yesterday. Grrrrrr…. Karly saw Dr. Falk yesterday.
Everything was great!! Her counts are still just fine –
13.8 hemoglobin 5.8 white 306 platelets

She is very healthy and doing extremely well – praise the Lord!! J The down part of her
day was getting 4 immunizations (including a flu shot). The tetanus shot really hurts!
But she slept most of the way home and was feeling just fine by evening.

Karly also saw Dr. Degner, the pediatric cardiologist. Her surgery is scheduled for
November 10th. It’s amazing what they can do these days! They are fixing a PDA (open neonatal valve in her heart) through her leg! She should be able to go home that same
day. She’s a bit nervous but the only pain should be the IV.

We see the audiologist & ENT doctors next week. We’ll see if her ears have healed or
if she’ll need tubes. Then we see the pediatric endocrinologist to talk about putting her
on growth hormones. I’m still praying about that one….

We got some horrible news this week. Sweet Abbey lost her fight with FA. I still can’t
bring myself to tell Karly. My PC at home has a virus, so we can’t check her website at
home. Please pray for the Stuart family!!

Les & I celebrated 16 years of marriage last Friday. Marriage is hard work but such a
worthwhile adventure!! Things are busy with my Dad’s wedding coming up - in 11
days! We’re all in the wedding. It should be a joyous day. I really miss my mom, but
I’m so happy my dad found someone so wonderful! Now we have to pray for NO RAIN
since it’s an outside wedding.

We’re off the Knotts Berry Farm this weekend. Our nephew is visiting from
Washington. We get to meet his fiancée. We’re going to spend a leisurely day at the
hotel Saturday. I hope the pool is heated!

We’re keeping very busy – between work, school, church, football, Boy Scouts, Girl
Scouts, birthdays, anniversaries, weddings, doctor visits, etc – I need a vacation already!
To add to my schedule I’m going to walk my precinct for President George Bush. Karly
says “Kerry is scary!” So I’m doing it for my kids!

Our life is good and I’m grateful for all our many blessings. We have to remember to
stop and thank the Lord for EVERYTHING He has given us and remember it’s all in
service to Him. We’d be nowhere if it weren’t for the strength the Lord gave us during
Karly’s transplant. It was in His mercy that she was healed and continues to do well.
Its our jobs to give back for all we’ve been given.

Love and blessings,
Nancy
But Seek first the Kingdom of God and His righteousness, and all these things shall be
added unto you" Matthew 6:33

Monday, September 27, 2004 3:42 PM CDT

Happy +18 months!!

Yesterday Karly made the 18-month post-transplant mark. She celebrated by learning to roller skate (sort of) and just being a NORMAL kid!! In the past few months she has bolder in attempting new things. She’s learned to swim - finally! We’ve enjoyed a couple of camping trips this past month and Karly was learning more and more swimming techniques each times including cannonballs, diving and flipping into the pool!

Karly loves her third grade teacher. He is a very gentle man. She works hard in school, especially in math. We are having her tested next month to make sure there are no after-effects of the radiation, chemo and transplant experience. We have noticed some short-term memory loss. I learned a lot at the Fanconi Anemia Family meeting that I’m using to be thorough in Karly’s care. She saw her hematologist last week (everything was great!) and sees her cardiologist Wednesday. I’m hoping its time to fix Karly’s PDA so that can be one less thing to worry about. It seems she might need another set of tubes, so I’d like to get both things done at once, perhaps over the holidays. She sees the endocrinologist next month to talk about growth hormones. Both Dr. Falk & Dr. Loh support the idea. I’m still praying about it.

My Dad is getting married in a month!! After my mom died last year, he met a wonderful widow named Ilze. She makes my Dad happy which makes us happy! Karly gets to be a flower girl along with Ilze’s 2 granddaughters. I get to be a bridesmaid along with her 2 daughters. We are so glad my Dad found someone to share the rest of his life with and welcome Ilze and her family into our little family!! J

Life is good…..we are enjoying every day to the fullest. Although we’ve had the flu & pneumonia go through the house (me, Les & Kyle), Karly got away with a cold only. Amazing! Her “super marrow” is doing its job keeping her healthy and strong.

Every Thursday you can find us at Santana’s freshman football games where Kyle is playing offensive guard. He loves High School! He’s taller than Mom now and fast approaching Dad’s height. He’ll be 14 on Sunday!!

Love and blessings,
Nancy

As for God, his way is perfect;
the word of the LORD is flawless.
He is a shield for all who take refuge in him.
For who is God besides the LORD ?
And who is the Rock except our God?
It is God who arms me with strength
and makes my way perfect.
Ps 30:20-32

Friday, August 27, 2004 3:29 PM CDT

**UPDATE** Karly saw the ENT doctor yesterday. Her vocal chords looked ok (the nodules were almost non-existent) so that was good news. But her ears were not so great. One ear is full of jello-like fluid and the other is indented. So we have to go back in 2 months to see if it clears up on her own or if she needs another (3rd) set of tubes. Her last set fell out 6 years ago!
*****************************

+17 months (today!)

It’s been a busy and fun summer! Karly continues to stay very healthy!! In July she went to Indian Hills Christian Camp for a week…a whole 6 days away from home. She had a great time!! She told me “Mom, I didn’t even think about you all week”. That’s great – that’s how it should be. She got to be NORMAL all week and do all the regular camp stuff.

We got back a week ago from the Fanconi Anemia Family Meeting at Camp Sunshine in Casco Maine (Lake Sebago). What a great experience!! We got to meet many other FA families and share stories and make friends. Karly finally got to meet other children “like her”. We met some wonderful people who are amazing! I was inspired by many of them. We had so much fun too!! Wall climbing, kayaking, swimming, mini-golf, etc…just like regular camp. Plus they had all the experts in FA there to give us parents the cutting edge info on FA. At night we did karaoke & a talent show. Karly did her “happy dance”. Appropriate since she’s such a happy kid! I get the pictures tonight so I’ll try and update the photo album and home page. The boys stayed home since Kyle had football two-a-days, so us girls got some “girl time”. We visited beaches in Maine and New Hampshire and made a brief visit to Boston. Karly got to add Maine, NH, Mass & Pennsylvania to her list of states she’s visited. A special thank you to the family who sponsored us at Camp Sunshine. This couple donated $1500 so we could enjoy a week a camp – THANK YOU!!!!!

Karly went to see Dr. Falk this past Monday. Her counts were great:
White 8,000
Red 4.4
Hemoglobin 13.4
Platelets 314,000
Her electrolytes were normal and her glucose (take 1 hour after lunch) was 88 which is terrific. Neutrophils are 4900! I caught a cold the last day of camp and sneezed around Karly a lot in our little rental car and the plane and she didn’t get sick, so her immune system seems to be working great!! On the bad side, poor KK had to start getting ALL her childhood immunizations all over again. She got 3 shots this time and will get at least 3 every 2 months until they are complete. Boo hiss! ! !

Karly goes back to school next Monday (a week early this year). She will be in third grade. She is so excited!! This will be her first full year in 2 years! Lord willing she won’t miss any school this year except for her doctors appointments. We see the ENT doctor today and the cardiologist next week. She will need to get her PDA (open heart valve) closed in surgery this winter. Luckily they can now do it through a vein in her leg and don’t have to open her up so she can go home the same day. Kyle is on the Santana High School football team (can’t believe my baby is in High School!) so we will be at a lot of games this fall. Girl Scouts starts back soon – and my girls are Juniors now. Lots more fun coming up….

Hope you all had a wonderful summer and stay healthy!! Thank you for your continued prayers for our family. GOD BLESS!!!

Love,
Nancy

Thursday, August 26, 2004 12:27 AM CDT

+17 months (today!)

It’s been a busy and fun summer! Karly continues to stay very healthy!! In July she went to Indian Hills Christian Camp for a week…a whole 6 days away from home. She had a great time!! She told me “Mom, I didn’t even think about you all week”. That’s great – that’s how it should be. She got to be NORMAL all week and do all the regular camp stuff.

We got back a week ago from the Fanconi Anemia Family Meeting at Camp Sunshine in Casco Maine (Lake Sebago). What a great experience!! We got to meet many other FA families and share stories and make friends. Karly finally got to meet other children “like her”. We met some wonderful people who are amazing! I was inspired by many of them. We had so much fun too!! Wall climbing, kayaking, swimming, mini-golf, etc…just like regular camp. Plus they had all the experts in FA there to give us parents the cutting edge info on FA. At night we did karaoke & a talent show. Karly did her “happy dance”. Appropriate since she’s such a happy kid! I get the pictures tonight so I’ll try and update the photo album and home page. The boys stayed home since Kyle had football two-a-days, so us girls got some “girl time”. We visited beaches in Maine and New Hampshire and made a brief visit to Boston. Karly got to add Maine, NH, Mass & Pennsylvania to her list of states she’s visited. A special thank you to the family who sponsored us at Camp Sunshine. This couple donated $1500 so we could enjoy a week a camp – THANK YOU!!!!!

Karly went to see Dr. Falk this past Monday. Her counts were great:
White 8,000
Red 4.4
Hemoglobin 13.4
Platelets 314,000
Her electrolytes were normal and her glucose (take 1 hour after lunch) was 88 which is terrific. Neutrophils are 4900! I caught a cold the last day of camp and sneezed around Karly a lot in our little rental car and the plane and she didn’t get sick, so her immune system seems to be working great!! On the bad side, poor KK had to start getting ALL her childhood immunizations all over again. She got 3 shots this time and will get at least 3 every 2 months until they are complete. Boo hiss! ! !

Karly goes back to school next Monday (a week early this year). She will be in third grade. She is so excited!! This will be her first full year in 2 years! Lord willing she won’t miss any school this year except for her doctors appointments. We see the ENT doctor today and the cardiologist next week. She will need to get her PDA (open heart valve) closed in surgery this winter. Luckily they can now do it through a vein in her leg and don’t have to open her up so she can go home the same day. Kyle is on the Santana High School football team (can’t believe my baby is in High School!) so we will be at a lot of games this fall. Girl Scouts starts back soon – and my girls are Juniors now. Lots more fun coming up….

Hope you all had a wonderful summer and stay healthy!! Thank you for your continued prayers for our family. GOD BLESS!!!

Love,
Nancy

Wednesday, July 14, 2004 6:19 PM CDT

Day +475 (more or less)

I’ve observed something interesting about Karly’s personality lately.
She likes to collect stray puppies. Not the canine type, but rather she’s
friends with the friendless, the less popular. Karly wants to be friends
with everyone! She doesn’t care what their “status” is. This sometimes
makes her less popular with the “in” crowd, but it doesn’t stop her from
trying. She truly doesn’t seem to judge people or rank them – she likes
everyone!! I also notice that she’s still a kid – not as mature as some of
her friends. She still likes Barbie’s and her beloved Robin (not Batman).
She loves cartoons & shows some of her peers distain as baby shows.
She prefers imagination games to anything else. You know what – I’m so
glad!! Our children grow up much too fast as it is. I want her to fully enjoy
every minute of her childhood and not be forced to grow up before she’s ready.
She’s been through enough with her transplant. She deserves this idyllic time
in her life. She’s really an awesome kid!!

Dr. Falk called and cancelled her appointment for this week. She is doing so
well that he doesn’t need to see her until August 23rd. WOW – that’s almost 4
months between appointments!! J

On a whole other note…we enjoyed our vacation!! Yosemite was wonderful!!
Its really heaven on earth. We had bears every night in our campsite. Karly
(and me too) was scared of seeing bears. Well, the first night we had a bear in
our campsite and every night our “9 o’clock bear” came to visit! She was in tears,
but I had the Park Ranger Sarah come and talk to her and comfort her. By the end
of the week we were very comfortable with our bear neighbors. We also saw squirrels, chickarees, deer, and all sorts of birds. We took lots of great pictures…some are
added here. The most fun we had was rafting down the river. WHEEE!!!!!

We went to Knotts Berry Farm & Universal Studios this past weekend. We had a
great time!! Karly tried all the scary rides – nothing seems to scare her. I guess if
you survive a bone marrow transplant you can survive anything!!!

Karly goes to Indian Hills Camp in a week. It will be her first time away from home
for a week. I think I’m more nervous than her! Unlike Kyle, I think she’ll be a little
more homesick. But I know she’ll have a really great time! Indian Hills is an awesome Christian camp. I’m going to meet with the camp nurse and set Karly up on a three time
a day to get sunscreen. Thank goodness that she doesn’t need daily meds anymore!! J

Hope you are enjoying your summer as much as we are!!!

God Bless,
Nancy

Tuesday, June 22, 2004 1:29 PM CDT

+15 months

Karly turned 9 on Sunday June 20th!!
HAPPY BIRTHDAY PRINCESS!!!!

We had a beach party on Saturday that was really fun. Karly and I got a little sunburnt but otherwise had a great
time. We have such a fun summer planned!!

She is SO NORMAL these days. What a blessing! She is off
ALL medication!! I’m so happy not to have to give her meds
twice a day. Her counts are perfect and she’s been really
healthy other than a sinus infection in May that was cured
with antibiotics. This summer she will go to sleep-away
camp (Bible camp) for a whole week. I’m a bit worried
about her and the sun, but I’ll talk to her camp nurse
about 3 time daily sunblock. We’re off on a family
vacation to Yosemite soon. We can’t wait to get away for
10 days! And then we’re off to the Fanconi Anemia Family
meeting in August in Maine. I’m looking forward to
meeting all the FA families and having Karly meet other
kids like her.

Karly finished school last week. Her grades were great and
she’s ready for 3rd grade. I’ll post some recent pictures
on this site.

Thank you all for your continued concerns and prayers.
Karly is doing fantastic thank the Lord!!! We give him
all the praise for her recovery!!

Love and Blessings,
Nancy

Tuesday, June 22, 2004 1:25 PM CDT

+15 months

Karly turned 9 on Sunday June 20th!!
HAPPY BIRTHDAY PRINCESS!!!!

We had a beach party on Saturday that was really fun. Karly and I got a little sunburnt but otherwise had a great time. We have such a fun summer planned!!

She is SO NORMAL these days. What a blessing! She is off ALL medication!! I’m so happy not to have to give her meds twice a day. Her counts are perfect and she’s been really healthy other than a sinus infection in May that was cured with antibiotics. This summer she will go to sleep-away camp (Bible camp) for a whole week. I’m a bit worried about her and the sun, but I’ll talk to her camp nurse about 3 time daily sunblock. We’re off on a family vacation to Yosemite soon. We can’t wait to get away for 10 days! And then we’re off to the Fanconi Anemia Family meeting in August in Maine. I’m looking forward to meeting all the FA families and having Karly meet other kids like her.

Karly finished school last week. Her grades were great and she’s ready for 3rd grade. I’ll post some recent pictures on this site.

Thank you all for your continued concerns and prayers. Karly is doing fantastic thank the Lord!!! We give him all the praise for her recovery!!

Love and Blessings,
Nancy

Sunday, March 28, 2004 6:09 PM CST

+368

Friday was Karly's 1st "Rebirthday". We celebrated at Girl Scout camp with over 100 girls singing "happy rebirthday to Karly". It was a wonderful day of celebration! We are so grateful to our friends for your support and prayers during this past year. Your prayers have been answered!!

The new picture of Karly on the home page was taken at Knotts Berry Farm at the end of a long day. She was so happy to spend the day with her Brownie (girl scout)friends. Karly even took on the "Ghostrider" roller coaster! I've posted a new picture on the photo album of her on the roller coaster. Its a priceless one! Although she looks scared in the picture, she quickly changed to a big smile and wanted to ride again!!

The Lord has been faithful to us and we have really felt His presence this year. We have to give Him the praise for all Karly's accomplished! Although we went through a lot of hard times, we have grown in our faith and as people. You really do appreciate things more after going through something like this!!!

Love and blessings to all,
Nancy

Thursday, March 18, 2004 11:13 PM CST

One year ago today we arrived at the City of Hope for Karly's
bone marrow transplant. It was a rotten day. Its hard to believe
its been a year!! So much has changed, but so much is back to normal.
We feel so blessed. Karly is very healthy. She shows minimal to no
signs of GVHD. She still takes 9 pills a day plus the "yellow paint"
(mepron) twice a week. Karly is in school and got a great report card
earlier this week. We're so proud of the way she's come through all this.
She's still the same sweet, thoughtful, creative child she always was. This
experience has made her even more kind to others. More appreciative of
life in some small way. We count our blessings every day we have her alive
and well.

Thank you all again for your love and support!!! It means so much to Les & I.

God Bless,
Nancy

Monday, March 1, 2004 11:06 PM CST

Karly went to see Dr. Falk last night for her 1 year checkup. I can't believe its almost been a year!!!! She is doing
incredibly well. All her counts were great, so she is being removed off her Prograf (immunosuppressive) and magnesium.
In 2 months when she goes back to LA she'll probably get off her Cellcept and Labetelol. He was slightly concerned about a
rash on her arm, but it could just be dry skin and not GVHD. When she goes to the BMT reunion in April he'll check her again.
Her potassium was still high, but that should change now that she's off Prograf, which has lots of nasty side effects.

Karly got her first haircut today! Just her bangs and a bit of thinning on top. The curls are dropping lower, so I think
her hair is going back to the way it was before - pretty much straight with some wave. I'm sure it'll lighten up too in the sun
(though with FA and the meds she needs to minimize sun exposure).

The bad news we got last week was her donor refused to sign the consent form, so Karly won't get to meet him. Its probably
because he is deployed overseas (we found out he is in the military) and because the form they gave him kinda frightens
the donor by telling them we might ask him for another organ or money!! UGH!! I guess they have to warn him about all the
worst case scenarios. The bad part is that this probably happened to someone for them to put it on the form. Oh well.
We'll still pray for him daily and he's still our hero!!! Maybe someday he'll change his mind. We are going to write him and
let him know its ok and we really appreciate everything he did for Karly.

Dr. Falk gave Karly the clearance to get a cat. Now we have to talk Daddy into it!! He promised her, so he's got to deliver.
Hee hee...he hates cats.

Hope all is well with your families. Thanks again for all the support you've given us over this past year. We love you all!!!!

Blessings,
Nancy

p.s. - see THE PASSION OF THE CHRIST!! It will change your life!

Monday, March 1, 2004 10:55 PM CST

Day +341
white 8.1
red 4.45
hemoglobin 13.5
platelets 377,000

Karly went to see Dr. Falk last night for her 1 year checkup. I can't believe its almost been a year!!!! She is doing incredibly well. All her counts were great, so she is being removed off her Prograf (immunosuppressive) and magnesium. In 2 months when she goes back to LA she'll probably get off her Cellcept and Labetelol. He was slightly concerned about a rash on her arm, but it could just be dry skin and not GVHD. When she goes to the BMT reunion in April he'll check her again. Her potassium was still high, but that should change now that she's off Prograf, which has lots of nasty side effects.

Karly got her first haircut today! Just her bangs and a bit of thinning on top. The curls are dropping lower, so I think her hair is going back to the way it was before - pretty much straight with some wave. I'm sure it'll lighten up too in the sun (though with FA and the meds she needs to minimize sun exposure).

The bad news we got last week was her donor refused to sign the consent form, so Karly won't get to meet him. Its probably because he is deployed overseas (we found out he is in the military) and because the form they gave him kinda frightens the donor by telling them we might ask him for another organ or money!! UGH!! I guess they have to warn him about all the worst case scenarios. The bad part is that this probably happened to someone for them to put it on the form. Oh well. We'll still pray for him daily and he's still our hero!!! Maybe someday he'll change his mind. We are going to write him and let him know its ok and we really appreciate everything he did for Karly.

Dr. Falk gave Karly the clearance to get a cat. Now we have to talk Daddy into it!! He promised her, so he's got to deliver. Hee hee...he hates cats.

Hope all is well with your families. Thanks again for all the support you've given us over this past year. We love you all!!!!

Blessings,
Nancy

p.s. - see THE PASSION OF THE CHRIST!! It will change your life!

Sunday, February 1, 2004 11:26 PM CST

Day +???? (~310)

Super Bowl Day: Well, we're bummed that Carolina lost (my dad's from North), but it was a great game and a fun party with my family. Karly has a cold, but she's doing ok. Now if I could just get her to clean her room!!

Here's the lyrics to the new Martina McBride song, I just love it!! to Karly....

In my daughter's eye's
I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I want to be
In my daughter's eyes

In my daughter's eyes
Everyone is equal
Darkness turns to light
And the world is at peace
This miracle God gave to me
Gives me strength when I am weak
I find reason to believe
In my daughter's eyes

When she wraps her hand around my finger
Oh, it puts a smile in my heart
Everything becomes a little clearer
I realize what love is all about

It's hangin' on when your heart has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes
I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you'll see
How happy she made me
For I'll be there...
In my daughter's eyes

I love you Karly!!!

Mama

Monday, January 19, 2004 4:16 PM CST

HAPPY MLK DAY!

We're enjoying a relaxing day at home. Yesterday our Brownie Troop
went to the Chula Vista Nature Center and had a great day. Today we
picked up our new truck!! Its a happy day!!

Karly is doing so well....I am so grateful!! Thank the Lord for His
many blessings!!!

Love to all,
Nancy

p.s. the new picture on the home page was taken December 1st.
Karly was getting her check with Dr. Falk in LA.

Saturday, January 10, 2004 8:45 AM CST

+?? (~300 days)

Karly's appointment with Dr. Falk went really well yesterday. She couldn't be doing any better!!!! YEAH!

Her counts are awesome!! Here's a sample:

white 5.8
red 4.01 (highest ever!)
platelets 334,000
potassium 4.8 (was in the 6's which is bad)
glucose 85
mangnesium 2.1

all these are great!! We are both really happy with her progress. He decided not to take her off any meds at this time. Maybe in 6 weeks. She is getting so close to her 1 year anniversary! Then, when she's off the cellcept and prograf, we'll have to see if GVHD rears its ugly head. Chances are good, but she should have a mild case.

Keep the prayers going! Not only for Karly but for Robert, Midge, Cade, Marshall, Charlotte, Nikki & Sara. There are so many people out there suffering.

2004 so far is a very good year!! I pray it is for you too.

Love and blessings,
Nancy

Thursday, January 8, 2004 10:40 PM CST

Day ?? +9 1/2 months

Karly sees Dr. Falk tomorrow. I'll update the site with her current count and status.

Its all good!!!

Love,
Nancy

Thursday, December 25, 2003 7:50 PM CST

+274

Merry Christmas!!

Its amazing we made it this far. I am so greatful to God for His blessings this year. It was a melancholy Christmas without my mom, but a joyous one too with Karly so healthy. Thank you all for your love and prayers.

Merry Christmas to all!!!
Nancy

Sunday, December 14, 2003 7:49 PM CST

+263

Karly surprisingly came out of the hospital on Thursday night. She is doing very well!!! Thanks for all your
prayers. They sure helped! She is fever free and not coughing too much. It was a very rapid healing.

I can't believe that Christmas is only 11 days away. We are so far behind this year. I'm struggling to write
my Christmas letter. Too much to say and cover! What an incredible year this has been....so much to be thankful for!

Love to all,
Nancy

Thursday, December 11, 2003 1:04 PM CST

+260

Karly will be in the hospital for a full 5 days for IV antibiotic (zinacef). They are adding some inhaled steriod
too. She is not eating so they are doing a barium check of her stomach today. She's down to 53 lbs, less than what
she was when she left the hospital in May. I hate being the food police - limiting my son and forcing my daughter.
After my own food issues I don't want them to have any (I lost 1/2 my body weight with bariatric surgery).

Karly is doing well in the hospital. Poor thing has had 8 "pokies" this week including 3 IVs.
I hate to see her suffer! Last night's change in IV to her right hand was traumatic. I'm praying this IV lasts!!

On the bright side SANTA came to Kaiser yesterday. Karly got 5 presents and a picture with santa next to her bed.
She is being SO SPOILED in the hospital. Her nurse said she was the most appreciative kid on the ward. (I'm glad! I
missed it since I have to work a few hours a day while she's in there.) She is such a joy for the nurses, and with
all she's going through I guess she deserves it. Her teacher was here with notes from her classmates and her
school nurse was here with stuff from the office staff. Everyone at Cajon Park has been wonderful to her!!! THANK YOU!!!

PLEASE KEEP PRAYING FOR MARSHALL & CHARLOTTE. CADE TOO...he enters the hospital today for his transplant.

Love and Blessings,
Nancy

Thursday, December 11, 2003 12:56 AM CST

+260

Karly will be in the hospital for a full 5 days for IV antibiotic (zinacef). They are adding some inhaled steriod too. She is not eating so they are doing a barium check of her stomach today. She's down to 53 lbs, less than what she was when she left the hospital in May. I hate being the food police - limiting my son and forcing my daughter. After my own food issues I don't want them to have any (I lost 1/2 my body weight with bariatric surgery).

Karly is doing well in the hospital. Poor thing has had 8 "pokies" this week including 3 IVs. I hate to see her suffer! Last night's change in IV to her right hand was traumatic. I'm praying this IV lasts!!

On the bright side SANTA came to Kaiser yesterday. Karly got 5 presents and a picture with santa next to her bed. She is being SO SPOILED in the hospital. Her nurse said she was the most appreciative kid on the ward. (I'm glad! I missed it since I have to work a few hours a day while she's in there.) She is such a joy for the nurses, and with all she's going through I guess she deserves it. Her teacher was here with notes from her classmates and her school nurse was here with stuff from the office staff. Everyone at Cajon Park has been wonderful to her!!! THANK YOU!!!

PLEASE KEEP PRAYING FOR MARSHALL & CHARLOTTE. CADE TOO...he enters the hospital today for his transplant.

Love and Blessings,
Nancy

Monday, December 8, 2003 10:01 PM CST

+257

We had our first major setback. Karly is in the hospital with pneumonia. High fever, nasty cough, not eating. She's dropped down to 53 lbs. She should be in the hospital for a couple of days. If she were a normal kid they would have sent her home with meds, but since she is post-transplant they weren't taking any chances.

Please keep her, Charlotte & Marshall in your prayers.

Love,
Nancy

Sunday, November 30, 2003 10:08 PM CST

+249

We just got back from camping with our friends. We had a terrific time!! Karly had so much fun playing and riding her bike. The heated pool was not, but everything else was great! It was COLD!!! But we just got bundled up and kept the heater running in our trailer. The kids roasted marshmellows, did crafts, mini-golf, fed the geese (Karly got bit) and played in the park. We love being Thousand Trails members and we really liked this park. I'll post pictures when I get them.

Please keep Marshall & Charlotte in your prayers.

Love,
Nancy

Tuesday, November 25, 2003 3:28 PM CST

Day +244

HAPPY THANKSGIVING!

Sorry for the lack of updates. We’ve been really busy and I just haven’t felt much like writing. I’m kind of emotionally tired these days being back at work. Karly went back to school on November 4th. She really loves being back in school! It’s great to see her so happy. She’s doing very well and is above grade level. I’m so glad we held her back in 1st grade. Little did we know how important that decision would be! (We held her back before her diagnosis) She loves the schoolwork and is a very good student. Plus her social life is much better – HA HA! I have been back at work full-time for a couple of weeks now. Its not so bad, but I miss my freedom!

We have so much to be thankful for this Thanksgiving. Today Karly will be on the Roger Hedgecock show again at the Chargers Blood Drive XXV. She’ll be on sometime between 4-4:30pm on AM600 or on the internet at www.rogerhedgecock.com. Last year we talked about her need for a donor. This year we’ll be able to talk about her successful transplant!! I never stopped to count but I think she had almost 50 blood product transfusions this year. Thank you all you blood donors! I’ll be giving another pint myself….

Please pray for the other FA kids going through transplants: Marshall, Charlotte, Cade & Robert. As someone who’s been there these people need our prayers and support. FA is such a terrible disease. These families are special!

We leave Thursday morning to go camping with the Bryan family (Karly’s “boyfriend”). We are going camping north of Los Angeles. It will be nice not to have to cook. We’ll relax in the heated pool, ride our bikes and go fishing. We’ve gone camping in our new tent trailer almost every weekend. We love it! Karly is so excited about camping with Danny. They’re so cute together and have been “engaged” for almost 3 years – since Kindergarden. J

Love and thanksgiving,
Nancy

Tuesday, November 4, 2003 9:59 PM CST

Day +222
(I think)

KARLY IS BACK AT SCHOOL!!!! I'll post her class picture tomorrow. She had a great first day! It is so nice to have her back with her friends and in the classroom. We love her tutor, but am glad she's back doing homework at school instead of here. Her counts look great, except that her potassium is too high. More yucky meds to clear her system. Everything else is dandy!!! THANK YOU DR FALK!!!

Love,
Nancy

Tuesday, October 28, 2003 11:12 AM CST

Day +216

WE'RE OK!!

We're thanking God for His protection. These fires that raged (and are still raging) through San Diego County circled us Sunday night. I got some incredible video. We lost power so the kids & I evacuated down to the beach at a friend's house. Les stayed behind in the dark. The fire burned down to the backyards all around us but not a house was touched! They had all created fire breaks on the hillside so we were saved. Almost 1000 other homes burned but not one in Santee. THANK GOD FOR HIS MERCY!! My church served as a feeding point for firefighters and a shelter location, but I didn't know because of the power outtage. Wish I could have helped, but my prayers were certainly going out for my neighbors.

Please Please keep us in your prayers. Karly is coughing really bad and I'm scared Dr. Falk (who we see on Monday) will prohibit her from returning to school.

Thanks for thinking of us!

"Be merciful to me, O God, be merciful to me! For my soul trusts in You; and in the shadow of Your wings I will make my refuge, until these calamities have passed by." (Psalm 57:1)

Sunday, October 19, 2003 10:37 PM CDT

Day +207

What a fun weekend we had! We bought a brand new Coleman Bayside tent trailer Friday. We were packing to try it out when our neighbors came over and asked if we wanted to join them at the Colorado River.....so the next thing we knew we were on our way to Arizona! Its a 3 hour drive to Yuma and then a little north to the campground. We enjoyed playing on the river with their speed boat, lounging in the sun and swimming in the river. Our neighbors have 4 daughters, so Karly had lots of fun playing with them. The highlight for Karly was being pulled behind the speedboat on a Sea Doo 3 seater inflatable raft. The kids kept saying "faster faster!". I realized how NORMAL Karly was being and got misty eyed. It was so wonderful to see her being just like all the other kids (only covered with more sunscreen!). I was a bit paranoid about her swimming in the river, but she was brave with her life vest on. She even went swimming off the boat in the middle of a lake - in deep water! It was great fun!!!

Tonight was the night my girl scout looked forward to all year - our LIMO TRIP!! We all went to dinner and the limo picked us up at 6pm. The girls were all dressed up and looked so adorable. Karly had her grandmother's sequin gloves and purse and put on her own makeup. I rented a 20 passenger Excursion Limo which was very very cool. It even had a "back room" where 4 girls at a time could hang out. We played the Scooby Doo DVD and drank Sprite. We drove down to Mission Beach and let the girls out to run around. I'll be picking sand out of my pantyhose for days!! All 16 girls were well behaved and had a blast.

I'm exhaused!!! I'll post pictures when I get them from the river and the limo. I'm thanking God tonight that he got Karly this far and that she can live such a normal life now. The only thing she can't do is go to school - and that will change in 2 weeks!

Love and blessings to all,
Nancy

Your righteousness reaches to the skies, O God,
you who have done great things.
Who, O God, is like you?
Though you have made me see troubles, many and bitter,
you will restore my life again;
from the depths of the earth
you will again bring me up.
You will increase my honor
and comfort me once again.
(Psalms)

Thursday, October 9, 2003 9:37 PM CDT

Day +197

Karly saw Dr. Falk today. I was really hoping he'd clear her to go back to school, but he wants to wait another month since she still has this annoying little cough. She's had it since the middle of August! The augmentan seems to be making it better, but I'm having a lot of trouble getting her to user her inhaler properly. Her counts were awesome except that she has a really high potassium count. I have to give her some nasty medicine to pull the extra potassium from her body. She MIGHT get off the cellcept next month. Another step towards normalcy!

Karly is going to school tomorrow to say HI to the kids and to get her picture taken with the class. I wanted to make sure she didn't get left off the class photo!!

Les & are going this weekend to a B&B in Idyllwild to celebrate our 15th anniversary. It will be the first time I've been away from Karly for longer than 12 hours. The kids are staying with my dad. We should all have fun!!! It will be weird not giving Karly her meds twice a day. Its about time I get away I suppose...

Karly says HI and thank you all for your kind messages through the months. She appreciates all your prayers and good wishes. We both appreciate it more than we can say!!!

Love and blessings to all,
Nancy

p.s. - we're all happy to have a new Governator!!

Wednesday, September 17, 2003 10:14 PM CDT

Day +175

I heard this old song by Twila Paris yesterday and it really touched me because it sure describes me right now! All us moms of kids with FA and other challenges can definitely identify with this!
GOD BLESS!!!
Nancy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing, strong beyond my years
But they don't see inside of me, I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
Deep inside this armour - the warrior is a child.

Unafraid because His armour is the best
But even soldiers need a quiet place to rest.
People say that I'm amazing - never face retreat
But they don't see the enemies that lay me at His feet.

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armour...

Deep inside this armour...
Deep inside this armour...
The warrior is a child.

Sunday, September 14, 2003 6:26 PM CDT

Day +172

NEW PICTURES POSTED!!!!

We had a great time in Reno!! We got to see Lake Tahoe, Virginia City and lots of the Circus Circus hotel. The wedding was beautiful and of course my neice was a gorgeous bride! It was lots of fun.

Karly saw Dr. Falk Friday. He has pretty much taken off the leash! She still can't go to school (I think he called it a cesspool of germs), but maybe after she gets a flu shot in October. Her counts are all great! He has reduced her cellcept to only once a day. So we get to go 4 weeks between visits. YEAH!!!

Karly's hair is coming is so curly. I hope you can tell in the photos.

Love and blessings to all,
Nancy

Wednesday, September 3, 2003 10:50 PM CDT

Day +162

We leave in a few hours for Reno for Karly's cousin Elissa's wedding in Reno, Nevada. Its been a busy week and I'll update you when I get back.

Please pray for the family of Brandon Knupp, a young man of 12 who just passed away from FA. He had his transplant a month before Karly and never left the hospital. His death is a horrible shock and is very painful. It makes me all the more greatful that Karly has done so well.

Blessings to all,
Nancy

Tuesday, August 26, 2003 9:54 PM CDT

Day +154

Today is day +154 for Karly - exactly 5 months since her MUD transplant. Physically she is doing really well. Except for some minor wheezing going on right now, she hasn't been sick at all since her transplant (a minor miracle I think!). We saw Dr. Falk yesterday for her checkup. He has decided NOT to let her return to school. I'm bummed but am glad he is being cautious. He says we'll talk about it again at Halloween and see if she can go off any of her immune-suppressive drugs. Then she can risk going back to school. Currently she takes the following:

Pepcid
Labetelol (high bp)
Magnesium
Mepron (since she is allergic to Septra and can't take Bactrim)
Cellcept
Prograf
Acyclovir
Itraconazole
Amoxicillin (just added yesterday for the respiratory thing)
Albuterol (ditto)

Since going off the prednisone she's lost half the weight she gained and looks normal again. Her GVHD of the skin seems to be minor and her counts are great. THANK GOD FOR HIS FAITHFULLNESS!!!!

Love and blessings to all,
Nancy

Wednesday, August 20, 2003 10:40 PM CDT

Day +143 (I think)

Karly is doing very well! She hs her days where she gets depressed and whines and cries but physically she couldn't be better - THANK GOD!!

I'd like to ask for your prayers for 2 special kids with FA that are going through rough times right now:

Today was Charlotte's second transplant. Her first one was just a few days after Karly's but unfortunately hers didn't take. Please pray that this time it works and works perfectly!! Charlotte is an 8 year old girl from Canada.

Brandon had his transplant a month before Karly but he is still in the hospital with a series of complications. This special 11 year old in Minneapolis needs our prayers!!

Karly had a terrific time with her cousins, but boy did she get tuckered out. Staying up past midnight 3 days in a row made her cranky and exhausted. We went to Legoland and all she did all day was complain that her feet hurt her. Poor thing - Istill give her way way too much slack but she deserves it with all she's gone through. Tomorrow we go to Sea World for a few hours and Friday we're off to Knotts. We see Dr. Falk on Monday and he'll decide if she returns to school. Crossing our fingers!!

Love and blessings,
Nancy

Monday, August 11, 2003 10:07 PM CDT

Day +138

Karly is doing really well!! She thoroughly enjoyed Vacation Bible School Last week. She is looking forward to having her favorite cousin here this week and going to Sea World. She had another blood test this morning to see if her liver functions have improved. Praying they have!! This will help us know if the GVHD has spread to the liver.

THERE ARE NEW PICTURES IN THE PHOTO GALLERY. Check them out!! Especially interesting is the comparison of the pre-prednisone Karly (May, top) to the post-prednisone Karly. She has lost 3 pounds since being taken off the dreaded pred & is back to her old "living on air" diet.

Love,
Nancy

Monday, August 11, 2003 9:17 PM CDT

Friday, August 1, 2003 10:39 PM CDT

Day +128

She's FREE!!!!!!! Karly finally got her hickman catheter out yesterday. She didn't get it out last week - it turned out to only be a "meet & greet" the surgeon. I was really frustrated because I didn't have any more supplies - so I had to get some emergency supplies for our trip. Anyway, she got it out yesterday under full anestesia and everything went great (except the surgeon was almost 3 hours behind schedule). She is NOT in pain and is very happy to be without her tubes hanging down off her chest.

Our trip went fine. It was HOT!! Yosemite was incredible!! I hope I got some good pictures of Karly there. I'll scan 'em and post 'em as soon as I can. The wedding was beautiful, my neice Vikki was radiant, and it was fun being with the family. We brought my dad along and he really made the trip fantastic!!!!

Karly's hair is growing in nicely. It seems curlier, especially on these unusually humid days we've been having. By the time school starts she should look pretty normal. We see Dr. Falk on Monday in LA, so I'll ask again if he thinks she can start school on time. I sure hope so!

Love and blessings to all,
Nancy

Sunday, July 20, 2003 6:11 PM CDT

Day +116

Karly is doing FANTASTIC!!! We went on Thursday for a follow up visit to see Dr. Falk. We got to see him at the City of Hope which was great - we got to say HI to a lot of the nurses who took such great care of Karly while she was there. It was kinda painful for me, bringing back a lot of uncomfortable memories. But all's well that ends well...Karly is doing so great!! She's officially off prednisone and her blood pressure medicine has been reduced. SHE GETS HER CENTRAL LINE OUT TUESDAY!!!! YEAH!!! That means she can swim when we go on vacation Wednesday. I'm so relieved that we don't have to lug all her central line cleaning supplies with us. Just 12 medicines!

My girlfriend from Minnesota has been here all week. It has been so great for me to have a friend here!! Dawn is a great friend and wonderful person. We've had so much fun! My dad took us to see AIDA Friday night (the Broadway musical - wow!!). Tonight we're off to see the Christian Community Theatre's production of Jesus Christ Superstar on Mt. Helix (outdoors). We're bringing a picnic and watching the sunset just before it starts. Should be great!! Karly has enjoyed getting out a little (still with her mask in crowds). Life is getting back to more "normal".

I'm out on stress disability until Karly can return to school. It makes it easier to only work 20 hours a week. I can take better care of both Karly and myself that way.

In case you haven't noticed, there is a new picture of Karly on the photo page. Not a great one, but you can see how she's changed since her transplant. Added almost 25% of her body weight thanks to the prednisone....oh well!!! Now if we can get her to grow a few inches into that weight!

We leave on vacation Wednesday to go to Yosemite. Les' neice is getting married Saturday at her home near Yosemite. We're taking the bus to Yosemite Thursday to see it in the summer. We ususally go in winter so this will be a new experience for the kids. Karly can't wait to visit with all her cousins. Just 6 months ago we didn't know if we'd get this far but here we are!!! On the road to full recovery! THANK GOD!!!!

Love to all,
Nancy

Saturday, July 5, 2003 3:25 PM CDT

Day +101

Karly made it!!! 100 days!! WOOHOO!!!!!

Its been a long 100 days, but by the grace of God she has come through with flying colors. We are so grateful to all the doctors, nurses, friends and prayer partners for helping her get to here. THANK YOU ALL!!!!!!!

Our celebration is tempered by missing my mom so much. Our 4th of July wasn't as joyous as usual. I went shopping for a new outfit and started crying in the Robinsons-May store because that's where we'd always go shopping together. I tried to get a couple of her rings sized down for me but they couldn't take it down 5 sizes without damaging the settings. I was so distressed! I couldn't believe it. So I'll have to go to a better jeweler. UGH

Karly is thoroughly frustrated by her restrictions. We keep having the same discussion that its not fair, but its what is necessary to save her life. She IS enjoying eating her canteloupe and grapes now!!

Love to all,
Nancy

Saturday, June 28, 2003 12:16 AM CDT

Day +94

CELEBRATION TIME!!!

Karly has been "released" a week early. She is doing so well that she got off her low bacteria diet and mask restrictions yesterday. YEAH!!! Karly can now eat some of her favorite foods like canteloupe and cheese. Her counts are awesome and she has no signs of GVHD. He has reduced her prednisone to every other day and doesn't need to see her back for another 3 weeks. She is getting another IVIG next week and then she'll get her Hickman catheter (central line) removed. I really loved having it, but its time to go!

Thank you for your kind thoughts and prayers for my mom's passing. She will be sorely missed!! Lots of tears still being shed. Please keep my dad in your prayers too.

Love to all,
Nancy

Thursday, June 19, 2003 2:50 PM CDT

Day +85

Tomorrow is Karly's 8th Birthday. Wish it could be a happier day, but we'll do our best. We have a lot of relatives and friends flying in so we'll be busy with visiting. Poor Karly will get the short end of the stick so to speak but we'll more than make it up to her.

Friday night is my mom's visitation.
Saturday is her funeral mass and gravesite service.
Saturday night is her celebration of life. That I'm looking forward to! I'll videotape people's wonderful memories of my mom that we'll be able to look back at over the years so that my kids don't forget what an awesome lady their Nana was.

We miss her so much already!! But she's in a better place and we'll see her again someday. Thanks for all your love and support!!!

Love and blessings to all,
Nancy

Monday, June 16, 2003 10:35 PM CDT

Day +82

My mom went home to be with the Lord tonight. Thank you all for your prayers. She is at peace now, reunited with her parents and in the arms of Jesus. Please keep my dad in your prayers at this difficult time.

Love to all,
Nancy

Thursday, June 12, 2003 3:50 PM CDT

Day +78

Sorry for the late update. Things have been extremely busy!! I owe many of you thank you cards and letters, especially Susan and Dawn....THANK YOU THANK YOU....and you'll be hearing from me very soon.

My mom made it through her surgery PRAISE GOD!!!! She is certainly one tough lady. She is still in a drug-induced coma (since my birthday) but may be waking up within the next few days. They removed her gall bladder which was gangrenous (sp?) and necrotic and causing the endless infection. She has done much better since that nasty thing was removed. They had to cut her open about 6" (I think) to get it out, so its a good thing she gets to sleep through the initial surgery recovery. Thank you all for your prayers --- they're working!!

Karly's checkup monday went really well. She is doing terrific!! Dr. Falk has lowered her prednisone down to only 5mg, so perhaps her massive appetite will slow down. She gained 4 1/2 pounds this week and it really shows on her face and waist. I sure hope this weight gain goes away when she's off the pred. My slender little girl is all pudgy now! But her GVHD seems completely gone....again another PRAISE GOD!!!

Les flies to West Virginia next Thursday to see his sister. He'll be gone until Monday. I'm glad he's able to go. He'll miss Karly's birthday next Friday, but that'll be an excuse to party an extra day!!

Love to all,
Nancy

Friday, June 6, 2003 12:05 AM CDT

Day +72

Short update.....

Karly is not going to LA today because my mom is not doing well. She is supposed to have her gall bladder removed today at noon, but she crashed this morning and we almost lost her. I got the call from my dad at 6:30am to come to the hospital. That was a scary drive! After much work by the nurses, she's stable now, but still critical. PRAYERS PLEASE!!!!

Karly herself is doing awesome!! She is completely healthy and happy and doing just terrific. She hates being in isolation, but that'll be over soon I hope. We'll go to LA on Monday and I'll update you.

Yesterday was my 40th birthday. Having Karly well was the best possible present I could have had!! It was a kinda sucky birthday, but I'm trying to keep positive and count all my blessings. Your friendships rate high on that list of blessings!!!!

Love to all,
Nancy

Saturday, May 31, 2003 12:35 AM CDT

DAY +66

white 16.9k
red 4.01 (up!)
platelets 270k

all counts looking great!!

Sorry its been so long since I've updated. The past week has been really CRAZY!! Between taking care of Karly, visiting my mom in the hospital, and working on our home remodel, girl scouts and my job I've been doing my headless chicken thang! My mom had a couple of low blood pressure spells over the weekend when they tried to sit her up and then Wednesday had another heart attack. She still needs our prayers since she's not doing very well right now. At least they have someone now better orchestrating her care...I'm more confident that they are doing the best they can for her now. Her outlook is very uncertain and we're really worried. Dr. Falk said Karly could visit her Nana in the hospital. I'm scared to take her in that germ-filled place, but its important for her to see her beloved Nana just in case the worst happens. Maybe seeing Karly is just the medicine my mom needs!!!!

Karly saw Dr. Falk yesterday. It was a long day in LA. She got her monthly IVIG infustion (5 hours in a doctors office - boring!!) and her blood tests. Everything looks great!! So great that her prednisone was lowered again to only 10mg a day and we only have to drive to LA once a week. YEAH!!!! Dr. Falk said technically he should be seeing her twice a week still, but she's doing so well and with all that we have going on here he felt once a week would be fine. I'm so relieved!! Her rash is cleared up and she looks terrific. If not for the bald head, you'd never know she ever had a transplant!! THANK GOD for His mercy and healing!!

We spent 2 hours on the phone with Les' sister Holly the other night. She's getting worse. Les is planning to fly to West Virginia sometime next month to say goodbye to his sister. We hope she survives that long. The colon cancer has spread everywhere including her lymph nodes, no its just a matter of time now. Our Lord is the ultimate healer, but it looks like her healing will be in a new body in heaven. Her church has been wonderful in helping with meals and prayers and we're very grateful to God's people for their love for her.

I spent my first night back at home last night. Boy did my bed feel good. It was the best night of sleep I've gotten in ages. It will take the whole weekend to get all my stuff back home and get settled in...but there's no place like home!!

Love and blessings to all,
Nancy

Look to the Lord and his strength;
seek his face always.
1 Chronicles 16:11

Tuesday, May 20, 2003 0:38 AM CDT

Day +54

All counts great!!

Please keep my mom in your prayers. She is still really sick. She's so sick with infections that they aren't able to check the status of her heart yet. So we're at 11 days and counting for her hospitalization....many days to come unfortunately.

We went to LA today and saw Dr. Falk. He was really pleased with how she looks and her counts. SHE DEFINITELY HAS GVHD. Bummer. But so far it is restricted to her skin and is controlled by the prednisone. I'm getting so tired of the drive!! Something funny actually happened on the way home today. I got pulled over by the CHP! They saw me driving in the carpool lane (the only way to get through Orange County) and thought I was alone so he pulled me over. When he saw Karly he said never mind. She's so small he couldn't tell I wasn't alone! He gave me a verbal warning for driving 75 - I was just going with the flow of traffic! I told Karly I'll have to get her a booster seat so that my fellow drivers don't think I'm cheating in the carpool lane.

I have to go to work tomorrow and figure out what I'm going to do about the rest of my leave. I want to work part time, but things to so up in the air right now, I can't count on anything. I'm trusting God for provision. We'll see what He can work out for me. So far He has provided completely, so I trust He will continue to do so. Plus I thank God for having such a great job and working for such a wonderful City. Thursday is my 11th anniversary at the City!!

Love and blessings to all,
Nancy

Thursday, May 15, 2003 11:48 PM CDT

Day +50

HALF WAY TO 100!!!!

white 13.8k
anc ~12k
red 3.58
hemoglobin 11.7
platelets 330,000
liver function good!!

THANK YOU FOR YOUR PRAYERS - THEY ARE WORKING!! Please keep 'em coming!!

First off, my mom is still recouperating at Grossmont Hospital. They STILL don't know the condition of her heart because she is too ill for the catheterization. She has multiple infections in her body, so they need to get her well first before they can tackle the heart issue. So please please do keep her in your prayers. We need her home soon!!

Secondly, Karly is doing FANTASTIC!!! YEAH GOD!!! Her counts are super high thanks to the prednisone. I'll take it, pred or not. Her lymph count is way way down, but thats to be expected with the immune suppression of pred. So......all in all things are GREAT! Dr. Falk is very pleased and I am too. Her rash has not spread and appears to be healing. The side effects of prednisone that we've seen so far are increased appetite and poor sleeping. I haven't seen the mood swings yet but they won't surprise me if she gets them. Its worth it to keep the GVHD under control.

We are almost HOME! We get carpet this weekend and I should be able to move in by next week. I'm glad I'm here at my parents though so I can help out. I went back to work part time last week but that will have to be put back on hold until things settle down around here.

Karly and I went to Brownies last night. All 16 of my girls were there. It was so great to see everyone!! Karly even played soccer a little bit with the other girls and fully participated in the meeting. She was scared that they would make fun of her bald head, but of course no one did. They were so welcoming and loving. I am blessed with a terrific group of girls. We're glad to be getting back into some "normal life" things.

God is good all the time!!!!

Love and blessings to all,
Nancy

Monday, May 12, 2003 8:44 PM CDT

Day +47

white 8.6
ANC 6100
red 3.34
hemoglobin 10.8
platelets 283,000 (woh!)
glucose 118

Its been a rough weekend. Today, instead of going to Los Angeles, Dr. Falk kindly agreed that I could take Karly to see Dr. Loh for her blood test. I wanted to be in town since my mom was scheduled for a catheterization for her heart attack. Well, they had to postpone her testing for 2 days since she is allergic to the iodine dye! But I was glad not to have to go to LA anyway since I'm just plain exhausted. I think I'm trying to do too much, watching after Karly, helping my dad, visiting my mom in the hospital, trying to get moved into my own home and going back to work! I haven't even called any of my friends yet. I'll have to remedy that tonight.

Turns out my mom's heart attack was more serious than we thought. She'll be in the hospital for at least another week. I'm really worried!! Kyle saw her twice this weekend. It was really hard for him to see her this way. Please keep her in your prayers!!!!

Karly's white counts were way up today. I hope it doesn't mean she is coming down with something. She's been exposed to more people lately (even with a mask), so I'm nervous. I hope its just the prednisone. We'll see Dr. Falk on Thursday but I think I'll call him tomorrow.

Karly was so glad to see Dr. Loh & his staff today. She also got to see her friends at Project Safe too. She can't wait to get back to her normal life. Soon, I hope!! Just takes time.

Love to all,
Nancy

Friday, May 9, 2003 10:58 PM CDT

Day +44

Well, the other shoe finally dropped....in more ways than one!

First off, please pray for my mom. She had a minor heart attack last night. She's in ICU and will be there at least through the weekend. She's doing ok right now, but could really use your prayers!! We haven't been able to talk to the doctors yet, so we don't know what they are planning to do with her. So prayers is what she needs right now!! Thanks!!!

Kyle and I went to see Billy Graham last night. It was like being in heaven!!! Sitting with all the other brothers and sisters singing and listening....it brought tears to my eyes. There were 54,000 people there last night and they are expecting over 80,000 people on Saturday night. I feel so blessed to have been there!!!

Karly went to see Dr. Falk today. Wednesday night she threw up a couple of times (too much chocolate I think) and she didn't eat much Thursday. Dr. Falk wasn't too worried about that but he was worried about the rash around her eyes. Her liver function tests continue to rise so he thinks she is starting GVHD. BUMMER!!! So he put her on prednisone. UGH!! I was really hoping to avoid the dreaded steriods, but they are the best fighter of GVHD. Dr. Falk also changed her antifungal from Diflucan to Itraconazole (Sporanox). Its $865 for 150 capsules. Thank GOD for insurance! We go back to LA on Monday.

Other than the start of GVHD, Karly is doing very well. Keep those prayers coming!!

Love to all,
Nancy

Monday, May 5, 2003 6:45 PM CDT

Day +40

white 4.6
anc ~3600
red 3.55
hemoglobin 11.6
platelets 251,000 (amazing!)

We saw Dr. Falk in Los Angeles today. It takes a whole day up just driving there to be seen for a few minutes. I'll be glad when we're only going every other week or so! Not too much traffic so we did the trip in about 2 1/2 hours each way. He was really pleased with her counts and her clinical evaluation. She looks great and feels great!! The only thing we need to keep an eye on is her liver function. Her counts there were slightly elevated with could be due to the TPN or possibly early signs of the dreaded GVHD. I'm counting on it being the first, not the latter! Dr. Falk agreed to take her off TPN when our current supply runs out (4 days). I'll be glad not to do all the nursing stuff, but its also scary in that she'll have to eat and drink better than she is now. She's down from 57 - 53 pounds since this whole thing started in March, but that's not too bad.

Today we stopped by Project Safe, her after school care place. She got to wave hello to her friends through the fence. I didn't let her get too close! She was really shy at first and wanted to hide behind me, but eventually waved and let people see her with her mask & hat. She's still the same beautiful and wonderful girl!!

I'm exhausted from the drive - I'll post more Friday when we go back...

Love and blessings,
Nancy

Friday, May 2, 2003 7:34 PM CDT

Day +37

Ok....lets try this again. I spent an hour updating this site last night and it all disappeared into the great world wide web. Oh well...

We're home!!! WOOHOO!!!!! It feels so great to be out of the hospital. We are staying with my parents until Les completes the remodel (another few weeks). Its fun to be back in my old home with my parents - kinda like a long slumber party!! :) Karly's progress since leaving the hospital has been amazing!! She is doing so well. Unlike the hospital where she wouldn't leave the bed unless it was for physical therapy or recreation, she only goes to bed to sleep. She is playing, coloring, writing in her journal, playing on the computer and being very NORMAL! She is eating so much better. At night she is on an IV for TPN, but I have a feeling that is short term now that her eating has picked up. For instance yesterday she ate cereal, 3 drinkable yogurts, 1 tube of chocolate peanut butter, 6 bites of spaghetti, 2oz fruit punch, 16oz chocolate milk and 1/2 bag of cheez-its. WOW! She is on a ton of medicine:

Pepcid - for her stomach
Clonidine patch - for high blood pressure
Labetolol - for high blood pressure
Diflucan (Fluconazole) - anti-fungal
MMF (Cellcept) - immunosuppressive, for GVHD prevention
Acyclovir - anti-viral
Prograf - immunosuppressive, for GVHD prevention
Slow Mg - to replace magnesium lost through other meds
Mepron - anti-biotic (instead of bactrim)
Pyridium - as necessary for bladder pain
Gammagard (IVIG) - once a month by IV, immune booster

All these meds (except pyridium) are crushed up and mixed with drinkable yogurt. Karly hates taking them but she does well with a bit of encouragement. I feel like a real nurse with all the medical equipment in my room. I have to fix up her IV every night. There's a whole lot to it and its kinda scary. I'll be glad when I don't have to do that anymore.

The last couple of days in the hospital were very stressful. Its exciting to leave there but very scary. The discharge nurse made me really mad so I had to go for a drive Monday afternoon, chocolate mint shake in hand driving 70 down the freeway singing "Sing your praise to the Lord" by Amy Grant at the top of my lungs. Very cathartic!! Tuesday night I went out to dinner at Chilis with some friends I made on the BMT ward. We laughed so hard and loud at dinner I'm sure the other patrons thought we were drinking (we were - water!). Maggie, Alicia & Leslie (and Diana whose already home) helped me keep my sanity over these 43 days at the COH. I'm glad we met and became friends!!

I can't say enough about the AWESOME nurses at the COH. They are first class professionals - smart, caring, nurturing and empathetic. They do all the hard work!! Karly was blessed with many great nurses both on the day and night shift. They have to be dedicated to be in this business - taking care of these really sick people and doing it with so much love. THANK YOU THANK YOU THANK YOU!!!

And thank you to all of you who helped get us through this with your thoughts and prayers. "The prayers of the righteous availeth much"! I'll never be able to thank you all enough. Karly sends her love and thanks too!!

I'll update again on Monday night after we see Dr. Falk for the first follow up in Hollywood.

Love and blessings,
Nancy

p.s. - Kyle and I are going to the Billy Graham crusade next Thursday to see Michael W. Smith and Third Day (and of course Rev. Graham). If anyone wants to come with us, let me know!! It was my deepest desire to be out of the hospital so that we could go and God graciously answered my prayers - and so many more!!

Monday, April 28, 2003 12:42 AM CDT

Day 33

white 3.9 (4.0 is normal)
ANC 2.4 (2400)
hemoglobin 8.7
platelets 187k (WOW!)

WE'RE COMING HOME!!!!!! Praise the Lord!!!!!!!!

We are outta here on Wednesday morning. Karly's counts look great, she's taking all medicines by mouth, she's eating (very little but its a start) and drinking a lot more. The blood is nearly gone from her urine, so that's almost completely healed. She's walking better and ready to hit the road. As of today she's only on an IV at night for additional TPN. So.....freedom!!!! We're so excited and so thankful to God for His healing and provision. Karly is truly a walking talking miracle!

Did any of you call the nurses desk Sunday night? Someone called claiming to be me and its freaked everyone out. If that was you please, please let me know so we can clear this up. I am now afraid to leave Karly alone. I'm posting here now since she's safely in recreation, but I'm not leaving her alone. Too weird, but hopefully just a misunderstanding.

Love and blessings to all,
Nancy

I will praise you, O Lord, among the nations;
I will sing of you among the peoples.
For great is your love, reaching to the heavens;
your faithfulness reaches to the skies.
Be exalted, O God, above the heavens;
let your glory be over all the earth.
Psalm 57:9-11

Monday, April 28, 2003 12:42 AM CDT

Friday, April 25, 2003 2:15 PM CDT

Day +30

white 3.0
ANC 1900
hemoglobin 9.1
platelets 137k

Day 30 is a special day! She'll be tested (through peripheral blood) to see how the graft is progressing. So far it looks really great and we are very encouraged. Dr. Falk will assess Karly on Monday and decide when she's going home. The goal is still Wednesday!! Karly is only on TPN at night and her liquids are being reduced during the day. She's taking all her pills crushed up very well mixed with Danimals drinkable yogurt. The only whole pill she has to take is her pyridium which she takes very well. Her bladder trouble seems to be healing well and her Hickman site looks better after 2 days aired out.

I went home yesterday to buy carpet and furniture. Had a lot of fun with Kyle, Les & my parents tooling around town visiting over a dozen stores. Didn't end up back at the City of Hope until almost 11pm! But got a lot done....

As I was driving home yesterday I played a cd that had the song "40 Days" by Third Day (a Christian rock band) on it. Before Karly's transplant this song really hit a chord with me. Driving home yesteray it was even more so! Sunday will be 40 days here for us. And we are still leaning on the Lord completely.

40 Days:
Here I am at what feels like the end
So I come to you, my Lord, again
With this burden burried deep within
This heart that You have made
And in this trial that im going through
I don't question 'cause i know it's true
That the sorrow brings me back to you
And you have made me stronger

(Chorus)
It's been 40 days and 40 nights
Down the road of many trials
And I pray its only for a season
Cause in the wilderness and in the flood
You're the one I'm thinkin of
And I know you've brought me for a reason

I have one more thing I've got to say
Before they try to take my life away
Let it be known that I am not afraid
Let your will be done,Lord

(Repeat chorus 2x)

This song is reminiscent of one of my favorite Bible verses...I can do all thing through Christ who strengthens me!! He has been our strength for sure!!

Friends in San Diego - - SEE YOU SOON!!!!

Love and blessings to all,
Nancy

Wednesday, April 23, 2003 12:17 AM CDT

Day +28

White 3.1
ANC 1900
hemoglobin 9.1 (low)
platelets 121k (amazing!!)

Well, the plan is GOING HOME A WEEK FROM TODAY!! No promises, it depends on how she progresses. She still has to recover from her polyoma virus which is related to (causing?) the hemorrhagic cystitis, which has improved since she started taking an oral med. Since our house won't be ready we'll just move in with my parents for a couple of weeks. That way I can be close to home and help out with the preparations. I just keep reminding myself that come June everything will be alright. May might be rough but summer's coming!

Karly has started physical therapy and LOVES it!! Mr. Steve comes over every morning to basically play with Karly. They walk the halls in funny ways (on her toes, on her heels, sideways, etc.) and play simon sez. They play catch and do other things to strengthen Karly's limbs. Today at recreation they are doing tie-dye! I've gotta run so I can catch it on film.

Thank the Lord for His healing and protection of Karly!! Although we are not out of the woods yet, everything is looking positive. The graft has definitely taken, and there is no sign of the dreaded GVHD. Don't stop praying!!

Love and blessings to all,
Nancy

Monday, April 21, 2003 5:05 PM CDT

DAY +26

White 3.4
ANC 2000 (not 3000 as I wrote Saturday - oops)
hemaglobin 9.4 (a little low)
platelets 102k

Karly's counts are looking good! Her platelets are amazing to me!! They haven't been this high without transfusion since over 3 years ago. Very encouraging. We are now focusing on what it takes to get Karly out of here and back home....

#1 Walking -- Karly is walking pretty well around the unit but not much outside yet. She started physical therapy today which I think will help. Her arms are pretty weak and her legs are still a bit wobbly, so they'll be working on that. This will come in time.

#2 Eating (getting off TPN) -- Karly ate 6 bites of yogurt for lunch along with 1/4 of an oreo and lots of licks of a popsicle. That's the most she's eaten in 4 weeks. Tonight we're trying spaghetti, one of her favorites, for dinner. The doc said I can buy her the brand of yogurt she wants (danimals drinkable and sprinklins)...anything to get her to eat better.

#3 Taking pills by mouth (getting off the IVs) -- as of today she will be taking 3 medicines by mouth instead of just the bp medicine. Our system of crushing the pills into apple juice works fine, as long as Karly is allowed to control it through counting to 10 first. This system works good because she'll get used to meds and she also gets more liquids.

She is still having a lot of blood in her urine. Its from the damage the chemo does to the bladder. Its really amazing what the human body can tolerate and repair itself from. All this nasty medicines that we put in her....and somehow she manages to make it all work and get better from it. We are truly "fearfully and wonderfully made"!

It was great to see my parents and son this weekend for Easter. A real blessing!! We went to Easter services at the local Catholic church (my mom is Catholic). It was nice to go to services but torturous to hear babies screaming all around. Come on folks - use the nursery! I am getting plugged into a local church here - Duarte Christian Fellowship - and will start women's Bible studies this week. I just wish I had done this weeks earlier. Having my car here has been a blessing. I forgot how much I love just tooling around!!

Dr. Falk wants to get us out of the hospital by the end of next week. He wants to follow us up at Sunset in Los Angeles. I'm wondering if we can get a hotel room close by so we don't have to drive 3 hours to Hollywood 2-3 times a week. City of Hope is 1 hour closer, but I'm glad we're staying with Dr. Falk. He's certainly done right by Karly so far! All I know if I want to get back home soon and resume "real life"!! Karly does too and I think she's finally up to doing something about it.

Love and hugs to all....
Nancy

Saturday, April 19, 2003 12:09 AM CDT

Day +24

White count 3.5
ANC 3000
Red count ~10
Platelets 75k

SHE IS MAKING PLATELETS ON HER OWN!!! This is such a big step. Platelets are the last thing to start being made by the new bone marrow. Its amazing to me to see her with normal sized red cells. :) Her platelets were just 42k 2 days ago and 71k yesterday...so she probably won't need anymore transfusions. YEAH!! Whoever her donor is, he's got super-marrow!!! Karly is more like herself every day - talking up a storm to whoever will listen. She is tasting a few things (not really liking anything) and is drinking a bit of apple juice with her crushed up pills. Her bp is still an ongoing concern due to the meds, but has been pretty good these past couple of days. Today's only concern was her glucose was over 300, but the doc thinks it was a contaminated sample, so they'll test it again this afternoon when she's been off the TPN (nutrition) for a while. If its still up they'll put her back on insulin, but this will only be a temporary thing. As soon as she is back eating real meals she will be off the TPN and her blood sugar will be back to normal.

Today my parents and son Kyle will be coming up for Easter. They'll get to take Karly out to the gardens and get her grand tour. She's still not walking a lot, so I'm going to try putting on her favorite old ratty white sandals and see if that helps. Karly has gotten 2 Easter baskets so far, one from Robinson's-May (young men's department) and one from an annonymous donor. She is getting way too spoiled! Susan from Florida sent Karly a really neat gift pack - Thank you!!! You have all been so kind to Karly. We really appreciate it!

Happy Easter - He is risen indeed!!!

Love and blessings,
Nancy

Thursday, April 17, 2003 4:52 PM CDT

Day +22

White count 3.3
ANC 2000

GREAT NEWS!! Karly's counts have finally taken another jump after 5 days of staying steady. YEAH!! I'm very encouraged because this is about the level they were at before she was admitted to the hospital. They are almost at a "normal level".

Other great news....Karly went outside last evening at sunset. I discovered I'm not coordinated enough to push her in the wheelchair while dragging along the IV pole - hee hee hee - I must have been quite a site. Karly enjoyed the sunset, hearing a bird sing, seeing a squirrel romp in the grass, seeing the flowers and smelling the night bloom jasmine. Maybe the night air did her well because she slept 7 1/2 solid hours. YEAH!!! That's definitely the best news of the week. No sleeping meds either.

Today Karly went to recreation and then when she was disconnected from her IVs we went out again. She got to see the japanese garden, feed the fish, enjoy the flowers and best of all see the rose garden. We loved reading the names of the different varieties and talking about which ones we'd love for our garden this summer. Karly got out of her wheelchair a couple of times to walk over the bridge and feed the fish and then again to walk on the chimes. The rose garden features a neat chime set that you walk on to make music.

Another positive development was she took some medicine by mouth and is drinking a little. That is a really big step forward. She can't leave the hospital until she is taking all her meds by mouth (she'll be facing taking about a dozen meds a day for a while) and eating and drinking on her own. She's taken the first little step and we're really proud of her.

All these positive developments have made us see the light at the end of the tunnel. Hope its not a train!!

Love and blessings,
Nancy

verse for the day...
Micah 6:8
He has showed you, O man, what is good.
And what does the LORD require of you?
To act justly and to love mercy
and to walk humbly with your God.

amen!!

Wednesday, April 16, 2003 4:40 PM CDT

Day +21

White count 2.5
ANC ~1500

Sorry its been a few days since I have updated here. Its been a busy few days. Sunday I ended up in the ER with a bp of 154/110 and a horrible migraine. I was there from 1pm - midnight. I hated leaving Karly alone so long! But luckily I was out of it for most of that time due to lots of meds. Too much med! The last 6 hours was spent trying to raise my bp since it got so low I passed out trying to walk to the bathroom. Karly was asleep when I got back thankfully. The nurses kept a close eye on her while I was gone.

Monday Kyle and my parents came up to spend some time with Karly. Since my ER trip, I decided not to drive home Monday. I spent time with my family and enjoyed a nice dinner out. Karly gave me the guilt trip for being gone so long (2 1/2 hours) but I'm learning not to let her get to me too much.

Tuesday my parents dropped me off at home so I could pick up my car. I decided it would be better after all to have transportation up here. I got a lot of things done while I was home, but not enough!! I took Kyle with me to Wal-mart to get some film processed. Started crying because I really miss the "day-to-day" things of just being with my son, going to a store, and watching my plants grow. My goodness the front yard was full of color and life!!! It looks wonderful. The inside was a mess, but Les & Kyle have been busting their humps to get the remodelling done. Karly's room should be done completely within a week or so. There's at least a month of work to do, so I guess we'll be up here for a while. I can't wait to be home and have everything back to "normal" - whatever that is!! I got to see a few of Karly's friends and give them hugs. I sure miss everyone at home!! Karly missed everyone and can't wait to see her friends again.

One of the main reasons I got weepy last week was that I was mourning the loss of my old life. It was a busy but good life. I have come to realize (as you parents of critically ill children can understand) that I will never again have a "normal" life. Oh, we'll have our own version of "normal", but it was never be as carefree as it was before. There's a lot of waiting for the other shoe to drop. Karly's FA is not "cured" by the transplant. The worst part of her symptoms - the aplastic anemia - will be taken care of, but FA will always hover over her head.

Karly's white counts have not changed for 5 days now. The doctor isn't worried - says this is pretty normal. Karly is getting better because she is sure getting ornery!! Its like pulling teeth to get her to do some day-to-day things like taking her shower, eating or walking around. Our first attempt at food (pb&j sandwich and apple juice) was a dismal failure. She said it tasted horrible and it really upset her. Today she walked around the unit for the first time. Ever seen those nature shows where they show newborn baby animals on wobbly legs? Yeah - it was like that!! She was wobbly but she was determined to walk to recreation class. This afternoon she will go outside for the first time in 4 weeks!! She can tour the Japanese garden and feed the Koi and turtles. Just being in the sunshine will be good for her soul.

Keep praying - its working!!! Love to all,
Nancy

Saturday, April 12, 2003 5:34 PM CDT

Fri: Day +16
White count 1.6
ANC 800 - cleared from isolation!!

Sat: Day +17

White count 2.2
ANC 1100
YEAH!!!!!

Thursday afternoon was very emotional for me. I got very "weepy", which of course I can't do in front of Karly, so I went for a walk in the cool evening to the rose garden. Really felt the need to just sit and ball for a while, but felt too self-concious in public to do so. I finally called Les...I missed talking to my best friend and having his shoulder to cry on. When I talked to some of the other moms I found out that they too started to crack when the engraftment started. We figured it was such a relief that it had started well, and was the next step in this process. My weepiness went away a bit during Survivor (my weekly addiction), but returned. So I reached for my Life Application Bible and opened it. The Holy Spirit reminded me of the verse we put on Karly's birth announcement - Lamantations 3:22-23 "Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness." The next verses say "I say to myself, "The Lord is my portion; therefore I will wait for Him. The Lord is good to those whose hope is in Him, to the one who seeks Him; it is good to quietly wait for the salvation of the Lord." That was exactly what I needed to hear. I have really held on to that since then. It reminded me of a favorite hymn that has been running through my mind ever since. "Great is thy faithfulness". It goes like this...

Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.

Refrain

Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

Summer and winter and springtime and harvest,
Sun, moon and stars in their courses above
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.

Refrain

Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

I cry everytime I sing that in church, and tears come to me now just thinking about it. So much peace came to me through that song. I can still get a bit weepy (dang it I'm due!!) but that song gives me peace.

Karly's counts keep going up up up!! So her morphine is going down down down. Unfortunately, that means morphine withdrawls. She has been so aggitated and cranky!! Not sleeping well at night until after 3am and then sleeping until noon. This is all normal, but very aggravating!! Her blood pressure is a bit high, due to meds, so the doctor has prescribed a patch that will help with that. Luckily it will help with withdrawl as well. She has been cleared to walk the halls, but doesn't want to. Hopefully she'll be up soon. She can't go home until she's walking and eating, neither of which she chooses to do.

My blood pressure is really high too. So I'm going home Monday and seeing my doctor. I'm not surprised considering the stress I'm under. I haven't been home in a month, so I can't wait to see it!! I miss my home. According to Dr. Falk, he is trying to get Karly home by May 1st. YEAH!! Scary though. Les has so much work to do to get the house ready, so we may have to stay in the village until it is. But the goal is home by May....sounds wonderful!!!

Please add my sister-in-law Holly to your prayer lists. She called last night and her cancer has matastesized throughout her torso, so she's been given 2-3 months to live. Les will have to plan a quick trip to West Virginia to say goodbye to his older sister. It doesn't look good, but please pray for her pain control and peace.

Sorry I've been so long-winded...I probably won't be able to post again until Tuesday.

Love and blessings to all,
Nancy

Thursday, April 10, 2003 4:22 PM CDT

DAY +15

White count .9
ANC ~380

Karly needed both platelets and blood today (a normal part of the transplant recovery). The cool part was she got her Papa's blood today!!! Pretty neat to be able to donate directly to someone you love. The platelets she got from me sure didn't last long, but that's ok. Pretty soon she'll be producing enough on her own. She's been in good spirits today. I took a long walk (~2 miles) to the local grocery store while Karly worked with the recreational therapist. They created beaded hair accessories for when Karly's hair grows back. Then she rested so she'd have energy for her teacher, who's with her now. She has been reading her stories from around the world and is now talking to her about fables. Now that Karly has more energy, she is starting to do some work herself with math problem worksheets.

Tomorrow is the big day here and boy is this place buzzing with excitement. The tents have grown and tables and chairs are everywhere. Many people are touring the grounds and revisiting old friends and caretakers. I can't wait until its us a year from now...Karly with a head of hair and color in her cheeks and all this just a memory. It feels closer now. Her counts are almost high enough to get her out of isolation. Probably by Monday if not this weekend. I'd hate to lose our big room, but can't wait to see Karly up and around.

Thank you all again for your cards, letters and postings. They really make our day!! I'll be responding to everyone eventually. Please know I do read them and they do mean so much!!!

Love and blessings to all,
Nancy

Wednesday, April 9, 2003 1:37 PM CDT

DAY +14

White count .6 (up)
ANC ~300 (same as yesterday)

Things are pretty busy here at City of Hope. Tents going up at the park. Friday is the 27th annual BMT reunion! Up and down the halls at the BMT unit there are pictures of the previous 26 reunions. Its amazing to watch how the group photo got bigger and bigger and bigger! And to see the buttons that say "25" years post-BMT....very encouraging. There's one gentleman who works here that is so friendly and happy all the time...turns out he was one of the first BMT patients who is now 26 years post-BMT. He's an inspiration!! I look forward to meeting some of the people Friday (I think I'll party-crash!) and hopefully find the 1 person who had a transplant here due to her FA. I hear she's 5+ years post and doing very well. So I have to find her and pick her brain!

Karly is doing a little better every day. Today she's pretty sleepy, so I'm trying to let her get some rest. She stayed awake almost all day yesterday and then had trouble falling asleep last night. I know its common for long term hospital patients to mix up their days and nights. To make matters worse Karly is a night person and I'm a morning person. UGH! Well, things will eventually get back to normal.

I was feeling pretty sorry for myself yesterday evening. I was down about some things going on and frustrated that we still have so far to go. That's when I got some mail from a friend in San Diego that included some posters for Karly's room. They are posters of children with Proverbs verses underneath. The one I placed on Karly's door is Proverbs 17:22 (I think) "A joyful heart is good medicine". That's our verse of the week!! I opened my Life Application Bible and started looking through some Proverbs and Psalms. Almost immediately I stopped feeling sorry for myself and received strength. Amazing what the word of God can do!!

Karly sends her love to everyone. She is homesick and misses her friends. Me too. Dr. Falk thinks we should be able to go home much sooner than the 100 days. So keep Karly in your prayers that she doesn't develop any of the many possible complications so that we can go home soon!!

Love and blessings,
Nancy

Tuesday, April 8, 2003 4:25 PM CDT

DAY +13

White count .5
ANC count ~400+

Karly's counts are still going up!! There's 2 counts we follow. One is the white count, which is the total count of white cells and the other is the ANC or absolute neutrophil count. Here's some informational stuff I borrowed off the internet:

White Blood Cell Count and the Differential Count
Measurement of the total white blood cell count is also a part of the CBC. White blood cells (also called leukocytes or WBCs) help the body fight infections. These cells are bigger than red blood cells, and there are far fewer WBCs in the bloodstream. Typically one cubic millimeter of blood contains about 10,000 white blood cells. An abnormal WBC count may indicate infection, inflammation, or other stress in the body. For example, a bacterial infection can cause the white blood cell count to increase or decrease dramatically.

The differential count of the CBC measures the numbers of the different types of white blood cells present in the blood. There are five types of white blood cells, each with a specific job: neutrophils, lymphocytes, eosinophils, basophils, and monocytes. The two major types of white blood cells are neutrophils and lymphocytes. Neutrophils play a key role in the body's defense against invading bacteria. They surround, engulf, and destroy invading microbes. If there are not enough neutrophils in the bloodstream, a person is at risk for developing serious infections. Lymphocytes produce antibodies, which are specific proteins that attack and help destroy specific germs, but most of these circulating in the blood either attack invaders (these are called cytotoic lymphocytes) or coordinate the attack of antibodies (these coordinators are called helper lymphocytes). They are especially important in fighting viral infections, like colds and flu.

When Karly's neutrophil count exceeds 500, she'll be cleared to leave isolation. YEAH! That might be as soon as tomorrow. Although it means leaving my big room for a much smaller one, it also means she can leave the room and go walking around the until. She can join the other kids in recreation and eventually walk outside!!

I'm so thankful everything is going so well. We do have so far to go, but I am ever more encouraged as she gets stronger and stronger.

As for me, well I've caught a cold. So has my dad, husband and son. We must have passed it along to each other this weekend with sharing drinks and kisses. Luckily I'm not sneezing too much, just feel kinda yucky. So I'm taking it easy today and taking vitamin C, tylenol & chlortrimeton. It's not great for me to be around Karly, but what are we gonna do? Someone has to take care of her and no one else can right now. Poor Les has been left in charge of all of San Diego KB Home customer service while the rest of management goes to some emergency meeting. Les may not be able to come up for another 2 weeks. YIKES!! We miss him so much.

Please keep both Karly & me in your prayers!!

Love and blessings to all,
Nancy

Monday, April 7, 2003 12:56 AM CDT

DAY +12

White count .4
Y E A H ! ! !
W O O H O O ! ! !
Y I P E E ! ! !
P R A I S E T H E L O R D ! ! ! ! ! !

It has happened!! The engraftment of those beautiful donor cells has started (early!) and Karly's white count has gone from <.2 to .4. THIS IS THE NEWS WE HAVE BEEN WAITING AND PRAYING FOR!!!! We're really happy in case you haven't figured that out! This is the best news possible. Karly's lips and mouth are in the process of healing and she's looking much better. She still has a long way to go....but the road now looks better!!

Last night I was doing a devotional on PRAISE. My favorite Bible verse has always been Phil 4:4-7 "Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." This verse has never been more important to me than during this whole FA trial. People ask how I can have peace about this, when its so scary. Its not me!! Its only through the power of the Lord that I can have peace and strength.

As soon as Karly's absolute neutrophil count goes above 500, she gets moved out of isolation. The doctor intimated that we might be making a "big move" in about 2 weeks. I sure hope that means Karly will be out of isolation and able to walk outside!! She can't wait to see the gardens, sculptures, and animals outside. I can't wait for her to see them either!!

Please keep Karly in your prayers!! We've turned a corner, but still have a long way to go.

Love and blessings,
Nancy

Sunday, April 6, 2003 2:23 PM CDT

DAY +11

Double digit days - finally!! Karly's counts aren't up yet (its too early) but she's feeling a little better and is more active (coloring in bed). Yesterday I went to Knotts Berry Farm with my parents and son while my husband and friend Bobbie stayed with Karly. It was really hard for me to relax and enjoy myself. I tried for Kyle's sake, but I kept thinking of Karly all day. I did manage to stay away for 8 hours. It was so wonderful to spend time with my son!! :) But Karly sure gave me a guilt trip after everyone left....telling me how much she cried for me all day. Oh well, I'm not going anywhere today except to post briefly here.

Karly's mouth is "sloughing off" which means it is healing. The swelling is way down and the peeling is revealing nice pink healing skin. She still occasionally runs a fever but her overall trend is getting better. She is getting my platelets today - yeah! It was a bit traumatic for wimpy me to donate them Friday, but I was so proud to do it! If I get the nerve up I may do it again in a few weeks. My count was 319k, so I had plenty to give. Her count this morning is 17k, so she'll need them soon. My dad gave too, so she's set for a while.

I'll post more tomorrow..... Happy Sunday!!

Love and blessings,
Nancy

Friday, April 4, 2003 1:18 PM CST

DAY +9

Well, the word for today from Dr. Falk is "she looks good". YEAH!! Our little princess is being the prize patient on the BMT ward. That certainly doesn't mean she's out of the woods yet or has even started to engraft yet (its too early), but everything is going according to plan. She ran a fever for part of the day yesterday and was started on a couple of antibiotics. The cultures showed today that this bacterial infection she has is resistant to 1 of the antibiotics, so she was taken off 1. She also has high blood sugar so was started on a little insulin mixed with her TPN (total parenteral nutrition) since she's still not eating. The increase in blood sugar is due to the TPN since she's not on prednisone (which can cause this effect). Last night she actually asked for some fruit punch. When I tried to give it to her is burned her sore throat terribly, so I don't think she'll try food again anytime soon. On the good news front she was much more alert yesterday. She asked to have her morphine turned DOWN and actually spent time coloring. She had trouble falling asleep last night, so she asked for her Disney Princess CD to be played to help. It did, eventually. She has become a pain with her mouth care, so we set up a sticker chart. So far its helping, but it takes time for her to get started.

Karly had to get platelets again yesterday because she was coughing up some blood and had a long nosebleed. They must be giving her small amounts because it only lifted her to 70k this morning. Hmmm.... Well, once those donor cells start producing, hopefully we can be in the triple digits. :) I found out something interesting yesterday. Apparently, since Karly's donor was male, she will be genetically "male" in her bone marrow. Doesn't affect anything except any kind of blood testing she might get in the future. I guess she'll never be an olympic athlete. Bummer!

I asked her where she was hiding the 3 cats living in her room. She looked at me like I was nuts. Her hair is falling out so much that it looks like 3 cats have shed on her pillow. You can't tell on her head yet, but she'll get there. It hurts her too.

Karly has a teacher that comes everyday (M-F) for an hour to keep her up on her schoolwork. Right now since Karly can't talk or really sit up for long, she's just reading to her. We love Mrs. Burris!! She's a retired teacher who reminds me a lot of Mrs. Robinson, Karly's teacher back at Cajon Park. She really holds Karly's attention when she reads to her. She's been reading her more books in the "Grandma Nan & Grandma Sal" series that Mrs. Robinson got Karly started on. She's also reading stories from around the world. Karly needs to work on her math, but that will have to wait until she can sit up and concentrate better.

I'm now actually excited about getting out tomorrow. I hate leaving Karly, but I really need the break. I won't be updating this site again until Sunday afternoon when hopefully I can report how much better Karly is doing. Lord willing!!

Love and blessings,
Nancy

Thursday, April 3, 2003 4:23 PM CST

DAY +8

Karly is more alert today. She actually asked to see the video of our Make-A-Wish Disney cruise. It sure brought back happy memories for us!! A smiling, dancing, laughing Karly - I can't wait to see her again! Karly also asked to color and to have her morphine turned down from .4 to .3. Maybe she won't sleep so much during the day. Karly has started to lose her hair. Not like I expected - it comes out just a few hairs at a time. It hurts her head too, something the nurses warned me about. If it keeps hurting we may shave her head, but I'd rather let nature take its course.

Karly is getting more ornery about her mouth treatments. It is taking longer and longer to complete the 4 step process (and even longer when it involves the nebulizer). So the psychologist is creating a chart for Karly. Every time she completes a "proceedure" she'll get a sticker and she'll work for a special prize after so many stickers. I sure hope this helps!! My sweet, compliant child is turning into a class A procrastinator when it comes to mouth care. I guess I can't blame her - she is in so much pain in her lips, mouth & throat.

It should be a busy weekend for us here. My parents are bringing my son up tomorrow and my dad & I will be donating platelets (assuming my counts are up). Then Saturday Les is bringing our friend Miss Bobbie up with him and they'll sit with Karly while we get away to Knotts Berry Farm for a few hours. I really don't want to leave Karly for that long, but I really need to spend some quality time with my son who I miss so much!!

Thanks again for those prayers, cards & letters - they really make Karly's day!! Her room is filled with your love!!

Blessings to all,
Nancy

Wednesday, April 2, 2003 1:19 PM CST

DAY +7

We made it through another week!! This one is really rough and today may be the worst of it. Please keep Karly in your prayers!! She had her last dose of methotrexate last night so her mouth sores are much worse. Luckily it gets better from here. Dr. Falk was in this morning and you could tell he really didn't like seeing Karly in all this pain. He calls her "princess" like many of us do, and he said its hard to believe we love you when you're going through this but we do. He called it "barbaric" and the worst part of his job. But we know it will get better from here and those beautiful donor cells will start engrafting now. Karly's morphine was increased again, and she got a breathing treatment, so she's comfortably out now. Her tongue is swollen to twice its normal size and her mouth is bleeding from all the cracks & sores. Ouch! Her tummy hurts too and the doctor said its because the lining of the stomach is also shedding the top layer just like her mouth is so that's really painful too. Poor baby!! We just gotta get past this and we'll be ok.

I want to thank everybody for all the wonderful messages, emails, cards and packages Karly's been getting. I haven't gotten personally back to anyone yet because I'm so overwhelmed by what Karly's going through. But please know they mean the world to me - your friendships mean the world to me!!! You have all been so kind and I won't forget it!!

I got out for a bit yesterday and walked to a local mexican restaurant with a couple of other ladies in the BMT unit. Our loved ones are all 7 days out and going through the same things. It so nice to be able to make friends here! Tonight I think I'm going to order pizza for us and share with the nurses.

We lost another FA child recently - Diamond. That makes something like 6 in the past 6 months. Makes me scared for Karly and so very sad for these families. FA is a nasty thing, but I have to keep focusing on the successes and positives. We'll make it through!!

Please keep Karly and our troops in your prayers. Keep praying that both have positive outcomes!!

Blessings to all,
Nancy

Monday, March 31, 2003 2:51 PM CST

DAY +5

Well, this will be hell week. Its what they expected, but what I dreaded. Karly has developed mucositis (painful swelling and inflamation of the mouth and throat with excess mucous production - yuck!!) and is on a 24hr morphine pump. Her throat hurts her so bad...which they tell me is good because it means her mouth isn't too bad. It just hurts me to see her in so much pain. She'll be sleeping and then bolt upright in bed with a look of terror on her face from the pain. Respiratory therapy has started coming in 4 times a day to help with her mouth care. Its a traumatic thing, but it does help her to feel better. A little push on her morphine button and she's right back to sleep.....for another hour before she wakes up in pain again. Luckily for her she spends about 20 hours a day sleeping right now.

Yesterday I got quite a nice surprise!! Les & Kyle came up for a surprise visit. Les said he heard the depression in my voice Saturday and wanted to do something nice for me. He sure did!!! Seeing my boys really cheered me up and gave me strength for this upcoming week. Karly was too sleepy to say much, but I think it helped her too. They brought us some cds that we enjoyed a bit this morning. I sure miss them a lot!!!!

Kyle's going with Nana & Papa to the Padres opening game today. Go Padres!! My new room gets AM radio so I was able to enjoy some Rush this morning and feel somewhat reconnected with the real world - as depressing as that can be theses days. If I were home now I'd be sending care packages to our troops with my handy-dandy Food Saver. My thoughts and prayers and with our troops and the full support of the Ross family is behind them.

Day +5.....I wish it were day +25 and we were engrafted, but I just have to be patient. Those days will come. I have to run now to donate platelets for Karly. Its a 2 hour procedure that I dread but I'm excited Karly will be getting MY PLATELETS!!!

Keep us in your prayers - especially this week!!!

Love and blessings,
Nancy

Saturday, March 29, 2003 6:30 PM CST

DAY +3

We moved into room 713 yesterday late afternoon. It is a bit larger and has a private shower. The best part is the lovely view of the Japanese Garden. Karly can stand on a chair and see most of it. I keep telling her about all the Koi and turtles there that she can see when she's cleared to go out. Unfortunately, that won't be for a while. Now that she's in isolation she can't leave the room for walks or recreation - everything has to come to her. She's on methotrexate to minimize rejection, so her white counts will remain suppressed for a few weeks. Then we hope to see some new marrow action - production of new and plentiful red, white & platelet cells!!

Last night Karly got started on morphine. This was expected, but still kinda a bummer. She doesn't have mouth sores quite yet, but theres a lot of mucous and she still throws up when that builds up. Her stomache cramps are controlled with adavan (?) and the morphine. She slept into almost 11am this morning - she really needed that!

Today was a great day for Karly. After all that sleep she felt pretty good. She got a shower and her guests started arriving! Miss Cindy & Miss Diane from Project Safe brought Kyle up with them. Gosh how I miss my son!! The hardest thing other than seeing Karly in pain is missing my son. My friend Shirley & her family (Brad, Matthew & Daniel) came by and waved through the glass. They brought lots of videos for Karly to watch. YEAH!! Maybe that means I don't have to watch Ariel 5 times a day. Cindy & Diane brought some videos too, so Karly has quite the selection now. They also brought pictures and letters from the kids in Karly's class. WOW! That really made her day. We have to write back tonight. Some Junior Girl Scouts came by and gave all the kids little bags of goodies, a box of cookies & a lei. How sweet!!!

Our new room gets a few AM radio stations, so with my earphones on and a puzzle in my hand I'm all set!!

Love and blessings,
Nancy

2 Corinthians 5:17
Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!

Friday, March 28, 2003 11:34 AM CST

DAY +2

Yesterday Karly slept most of the day. That's what her body needed to adjust to the shock of all these new cells. She woke up around 5pm and we played & watched "The Grinch". About 8pm she was ready to go back to sleep, and slept until 8am this morning. She got me up about 4 times during the night to help wipe her (she still has diahrea) but we both went right back to sleep.

Today she woke up happy and feeling much better. I gave her a shower and we walked around the unit a few times. She was happily coloring pictures and watching "Barbi as Repunzel" as I left for my shower. Today is a beautiful day here in Duarte! We should be moved into the isolation room today - one that overlooks the Japanese Gardens!! I look forward to the change.

Time actually flies pretty fast here. I haven't done much reading yet, but have completed a puzzle book. Karly got her first mail yesterday - a package from my friend Carrie. THANK YOU!!! It was great timing and made her day! I keep reminding Karly that every day is one day closer to going home. We still have a long rode to walk, but I am very encouraged she'll be just fine!

The long expected mouth sores (and mucositis) is starting. I have been told they'll put her on a morphine drip where she controls the button. As much as she hates meds, she might use it. Another day, another challenge to surmount. Together with the Lord we can do anything!!

Love and blessings,
Nancy

2 Corinthians 5:17
Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!

Thursday, March 27, 2003 1:30 PM CST

DAY +1

Yesterday was a good day for Karly!! She was in good spirits most of the day. We made a big deal about it being day 0 - her "re-birthday". She's all excited now that she has a real birthday, an "un-birthday" and a "re-birthday". She got up and took a shower and actually enjoyed it. She was soooo looking forward to recreational therapy, but it was cancelled. Bummer! But she now likes to wear her mask so we went for her first complete walk around the unit - 3 times!! That was the first time in a week that she had been up and around for more than a bathroom stroll. It was encouraging to me. Daddy came by to visit at 3pm which really brightened her up. We visited for a while and then Les took me to diner. Karly's not eating so they'll have to start her on TPN today. Anyway, we enjoyed a steak dinner at Applebees (yummmmmm) and it was so nice getting out for a bit.

We got back to her room and visited some more but then it was time for Daddy to go home (8pm). Just as I was walking him out the nurse stopped me to say that the transplant was READY!! So I put my shoes on and accompanied her to the blood bank (in my pajamas!) to get the 3 beautiful bags of bone marrow. We took pictures of the process (including me in my jammies holding the cooler!) so that we can remember everything. Karly started getting to cells at 8:45 so Les got to stay and watch her get started. It was a whole lotta cells, so it took until 2am to infuse them all. It was a rough night. Karly got aggitated from some of the pre-meds (seems she can't tolerate either the benadryl or the adavant(?)) and got bad stomach cramps and diahhrea. She eventually threw up so that helped her feel better and finally fell asleep at 4am.

The phone started ringing at 9am and the doctor came in. Karly's blood pressure was up and her oxygen level was low (blue lips) due to all the added red cells from the tranplant. Her hemoglobin count had increased from 7 to 15 overnight so her little heart was working overtime to oxygenate all those lovely red cells. She fought the oxygen mask, so I had to hold it an inch from her face until she fell asleep again. Eventually she realized that the oxygen made her feel good, so she was holding it on herself. Her level rose from about 81 to 95 so that nurses were happy. We're trying to get her to sleep as much as possible today so that her heart can rest. The doctor put her on lasix to get rid of some of the extra fluids from the tranplant so she gets up to pee every 30 minutes and then falls back asleep (Thank GOD!).

So we've made it to day +1. YEAH!! Now we'll just let her "garden grow" as Dr. Falk says. Come on stem cells....infuse!!!!

I keep forgetting to tell you all about the food here. Karly is on a "low bacteria" diet to prevent foodborne illness. They have the COOLEST dining system here. Basically I have a menu and I can order whatever she wants, whenever she wants, as much as she wants!! If she wants eggs and fruit loops for dinner, that's what I order. Baked fish for breakfast? No problem. (weird, but no problem). The food is good too. Like today for lunch I plan to order a cheese pizza, chocolate ice cream & iced tea for lunch. Karly won't eat any of it, so I'll have to finish it off for her. :) Works out nicely!

No complaints - the City of Hope is everything people told me it would be!! I love this place.....hate having to be here but am so glad its here......

Love to all,
Nancy

Tuesday, March 25, 2003 11:46 AM CST

DAY -1

YEAH!! Karly's transplant day is almost here. The chemo is DONE and all we have left is another day with ATG and prograf today. Karly seems in much better spirits today. The other day Kyle brought Karly a set of building rings from our lunch at Dennys. Normally Karly would have been building happily away, but with her mood these past few days she gets frustrated immediately and throws a fit. Well today she made 3 things and didn't get mad. It was a breakthrough of sorts. I'm taking it as a sign that things are getting better for her spirits. She still desperatly misses you all!! I'm hoping today we can get her out of her room and up to peds where they have a great playroom. That is IF we can get her to wear a mask. Her white count is about 0 now, so we have to be careful.

Thank you for the encouraging notes you post here. They mean so much to us!!!

God Bless you all.....
Nancy

Monday, March 24, 2003 1:30 PM CST

DAY -2

Yesterday Karly held a pity party. OK, she was entitled. She really misses her brother, dad, and friends. Her chemo is going very very well. All the problems she had with the first day disappeared with the subsequent 2 treatments and today's are looking good too. In other words - IT COULDN"T BE GOING ANY BETTER! Praise the Lord!!!! He has been merciful to her...its not easy but He's been with us all the way. Karly's little body is amazing what it can take. Her white counts dropped from 3.3 to .5 overnight (Friday) so she's been in semi-isolation. I have to wear a mask in her room at all times, including sleeping. She didn't eat anything for 48 hours, but finally last night ate an entire bowl of fruit loops cereal and kept it all down. She's doing well on her mouth care even though she hates it. We still haven't quite managed 6 times a day, but did 5 once and 4 most days. Mouth care involves swishing and spitting this antiseptic mouthwash and then swishing and swallowing a yellow nystatin liquid. She takes control of her own care in that she holds the cup and determines when she's ready to do it. Karly amazes me with her toughness. The past 2 days she's been down and crying a lot ("I want to go home", "I can't do this") but she still toughs the treatments out as long as I'm with her. I even feel guilty being away now to write this, but I needed to stretch my legs. She's been spending alot of time cuddled up on my lap in her bed. She just wants to be near me all the time. She's not napping during the day, but sleeping well at night (usually 8pm - 8am). Her platelets dropped to 7k so she had to get a transfusion last night because her Hickman catheter site was oozing blood 5 days post-surgery. The site has bothered her a lot and itches from the healing. Looks very bruised but clean. I am so excited that today is the last chemo day and her transplant is coming up very soon. Dr. Falk is so impressed with her progress he is taking a 4 day weekend to go skiing (ok, he was going to go anyway, but...). Everything is right on track.

Keep those prayers coming!!! Bless you all!! Karly sends hugs and kisses....
Nancy

Sunday, March 23, 2003 1:00 PM CST

DAY -3

Chemotherapy - poisoning your child on purpose. UGH! Karly's first day of chemo was rough. Headaches, vomiting, leg pains, etc. It was the ATG that did her in. She seems to have no problem with fludurabine and only leg pains with cytoxin. The ATG gave her a high fever. Poor thing was sooooo miserable. Yesterday's chemo went better with no vomiting and fewer side effects and NO FEVER!! Maybe it was the fact that her beloved Nana & Papa brought her brother up for a visit. I saw the biggest smile in days from her!! She really loves her bubbie (brother Kyle)!! The nurses have been so outstanding, I can't say enough about the care Karly has gotten. It really helps you get through things.

I'm off to shower.....much love to all!!!!
Nancy

Friday, March 21, 2003 12:47 AM CST

DAY -5
Our first update from the City of Hope....we're finally here and things are moving along. A quick recap....

Tuesday was a disaster! We were already running over an hour late in leaving San Diego when we stopped in Lake Elsinore for a potty and snack break. With all the stress I've been under lately, my head's not been on straight and I left my wallet in the bathroom (I think). 30 miles later I realized my mistake and we raced back to the place. Nope, no wallet - anywhere!! So I lost all my cards, money, etc. I was in tears!! And even more late. The wonderful folks at the City of Hope got us a place to sleep that night and some grocery certificates, so that took some of the sting out of the situation. Needless to say we were 2 1/2 hours late to peds for Karly's transfusion (she was at 48k platelets 7 days post-infusion - not too bad). To make a long story even longer, we didn't get out of there until 11pm and Karly didn't eat until 10pm. Even the demerol pre-med didn't make her sleepy! She seems to have no reaction to demerol, benedryl or tylenol with codeine. UGH!!

Wednesday morning we checked her in for her central line placement. That went very well. They even let me accompany her into the OR until she fell asleep. The surgery took less than an hour and she woke up just fine. We got settled in our room (730 for now) and Les took off for home. Karly got lots of hydration for the rest of the day (no chemo yet). The only problem with that is she needed to pee every 5 minutes. Eventually they brought her a porta-chair so she could do it herself. Not much sleep that night either. (BTW - the war started just as I predicted in January - on the day she was admitted - go troops!!!)

Thursday was FBI day. Full Body Irradiation. Twice - once at 10am and once at 4pm. Small doses due to her FA, but she was a real tropper. She itched a lot by the second dose and it turned her skin warm and red. But really, not as bad as I feared. Got some cute pictures of her in her FBI gear.

Today is chemo day 1 of 4. Fluburdamine (sp?), cytoxan & ATG. They say she'll definitely have problems with the ATG. I'd better get back to her room. Just took my first shower her so I snuck on the computer to update you all.

Karly's moods are variable, but so far what's to be expected. The nurses are WONDERFUL!!!! Can't say enough about the care she's gotten. Our little corner room has a view of the playgroung and a lovely tree that is occasionally visited by the local squirrels. The grounds are so beautiful. I definitely need to get out more....

Blessings to all, keep Karly in your prayers 'cuz now the hard stuff starts!

Love,
Nancy

Sunday, March 16, 2003 10:48 PM CST

Today's been a tough day. I ran out of steam early, but there's still so much to do. Church was great - I really needed that. For Karly they brought her on stage at Children's Church and had everybody pray for her with their hands outstretched to her (since they all couldn't lay hands on her - too many germs!). They are going to keep her in prayer as do many people at my church. Sonrise Community Church has been sooooo supportive!!

After church Karly got another blood test to go with her 24 hour urine collection. Hopefully that's the LAST test before transplant. UGH! I had to get a blood test too (thyroid check) so I got to be brave and get mine first. I think Karly almost enjoyed watching someone else get poked. Then we were off to meet the Brownies and go to Mission Trails Regional Park Visitor Center and work on their Eco-Explorer badge. It was a fun diversion for a few hours. Then off to get yogurt. Only 6 of my girls could come, but it was a great time! All except that Karly kept fighting with her best friend Tiana. I'll try to assume its because her platelets are crashing so therefore her seratonin level is low. She was being a B-R-A-T. I guess with what she's about to go through she's entitle to a little bad behavior. This evening the Brownie moms delivered a huge gift basket for me to take all sorts of little personal goodies to the hospital. It was sooooo sweet!! Everyone has been so good to me. I will really miss being a Brownie leader....

I've got to pack tonight and get some cleaning done. I'll update again tomorrow and then I'll be off line as we get set up in the hospital.

Love and blessings to all,
Nancy

Friday, March 14, 2003 11:36 PM CST

This has been a busy week. Karly got her platelets on Tuesday. It wasn't pleasant. She complained of pain and being cold. I can't wait until she gets her central line & doesn't keep having to get poked. I think she's only got 2 "pokies" left - a creatinine test Sunday am and her IV on Tuesday. The plan is to leave the IV in after her platelet transfusion to use Wednesday morning for her central line surgery. Hope that works out for her sake.

Wednesday we went to Knotts with Karly's "fiancee" and his family. They are so cute together! All 8 of us had a great time. I think I'm officially "theme parked-out" now. Ready to get serious and get this transplant over with!!

Karly got another ct scan today and there didn't seem to be any sign of infection, so I think we're on track for next week. I'm almost ready. I've cooked up a storm and gotten a lot of use out of my FoodSaver so I know my boys won't starve while I'm gone. This weekend we have a birthday party and a girl scout event to go to....and a little cleaning and prepping too!!

Enjoy your weekend,
Love,
Nancy

Monday, March 10, 2003 2:56 PM CST

Hi friends!

10 days post platelet-infusion Karly's platelet count is down to 19k. Again. This time her white counts are down to 3.3 and her reds are really down too (to their lowest ever). So....thank God she is getting a BMT in 16 days!! She needs to go in tomorrow to the hospital for more platelets. Then we're off to Knotts Berry Farm on Wednesday.

The kids went to Legoland on Saturday with Nana & Papa (THANK YOU!) and had a terrific time!! I'm glad I didn't know how low she'd gotten. Oh well, she had fun. Like I said yesterday, its important to enjoy each day to the fullest!!

Karly gets admitted to the City of Hope a week from tomorrow. I'll post her contact information on this site ASAP.

Blessings to all,
Nancy

Sunday, March 9, 2003 6:38 PM CST

Its a beautiful Sunday afternoon in San Diego. We're wearing shorts in the 77 degree sunshine. Karly & I went to the park < 1 block from our house and rode bikes and played. I sat and read a book on bone marrow transplants as she played in the park. When we got home we made chocolate chip cookies (no, not from scratch, from Costco!) and then blew bubbles in the front yard. It was a very nice day! :) We are trying to enjoy each day to the fullest.

Karly went back to school Thursday with her new pixie haircut. She got a couple of comments about looking like a boy, but she handled it really well. She looks so cute!! But I will NOT keep it this short when it grows back in. I miss brushing her long hair. The one benefit of having it this short, other than not having to fuss with it, is that it makes her beautiful green eyes just POP out!! WOW!!

We see Dr. Loh tomorrow so we'll know her current count. I'm really curious to see how low it dropped 10 days after transfusion. I'm hopeful they're still high enough to go to Knotts Berry Farm on Wednesday with our friends the Bryans - Karly's "boyfriend" Danny and his family. Eh - we're going anyway! ;)

Have a blessed week!!
Love,
Nancy

Friday, March 7, 2003 10:05 AM CST

Nancy Kinley sent me this this morning, so I thought I'd pass this along today. Good things to remember!!!

REMEMBER
=========

* Remember that your presence is a present to the world.

* Remember that you are a unique and unrepeatable creation.

* Remember that your life can be what you want it to be.

* Remember to take the days just one at a time.

* Remember to count your blessings, not your troubles.

* Remember that you'll make it through whatever comes along.

* Remember that most of the answers you need are within you.

* Remember those dreams waiting to be realized.

* Remember that decisions are too important to leave to chance.

* Remember to always reach for the best that is within you.

* Remember that nothing wastes more energy than worry

* Remember that not getting what you want is sometimes a
wonderful stroke of luck.

* Remember that the longer you carry a grudge,
the heavier it gets.

* Remember not to take things too seriously.

* Remember to laugh.

* Remember that a little love goes a long way.

* Remember that a lot goes forever.

* Remember that happiness is more often found in giving than
getting.

* Remember that life's treasures are people, not things.

Author Unknown

Tuesday, March 4, 2003 8:49 PM CST

Karly's "Un-birthday and Best Wishes" party on Saturday was quite a big hit!! Over 60 people attended. Kinda a madhouse with too many kids, but there sure was a lot of love there!! She received lots of wonderful messages of love and support and plenty of toys to keep her occupied at the hospital. After the party we attended our first Brownie troop sleepover. 12 of the 15 girls attended. It was lots of fun, but it sure tuckered me out...the girls stayed up past midnight. Sunday I just died! Slept in and rested most of the day. Thank God the transplant was postponed 2 weeks - I never would have gotten everything done.

Monday we went to Disneyland. It was a great day! Cold and not too crowded. Our longest wait was 30 minutes for Indiana Jones. Karly is finally tall enough to ride it (she's 46" tall). When she went on it she was almost in tears by the end. It really scared her! But she got brave later on and rode it again and claimed she wasn't scared a bit! She crashed out in the back seat on the way home, tired but happy.

Tomorrow we're off to Disney's California Adventure. They have a 2 for 1 deal for southern California residents, so we're taking advantage of that. None of us have ever been there, so we're looking forward to it. Karly is going back to school on Thursday, so I'll be going back to work, at least part-time. I'd rather take the 2 weeks off completely, but I don't have the leave saved up. Bummer!

Karly got her hair cut today. Really really really really short. Its cute! She looks like Tinkerbell in the movie "Hook" (played by Julia Roberts). I am calling her the new Jaime Lee Curtis! She looks soooo different, but the cut accentuates her big green eyes. My mom's expert hair stylist did it for free as a gift to our family (he's normally $40+ for a haircut). Robert is also making Karly a hat with hair extensions attached for her to wear when she goes bald. Karly will be a cute baldy with her precious face!!

Love to all,
Nancy

Friday, February 28, 2003 9:58 PM CST

Oi vey! I can't believe it..... because Karly has severe sinusitis, her transplant has been postponed 2 weeks. ARGH!!!! I am sooooooo frustrated. BUT - - - I am chosing to make lemonade out of this lemon. I really needed the 2 weeks to get my house in order and do some other stuff. It really works out much better this way. Its all part of God's plan and I need to say "praise Him" and keep on the trail He has in front of me. Karly is relieved (of course). Today she had the CT scan that confirmed the diagnosis and got a platelet transfusion. For the first time ever she had a major fit during the iv placement. Can't say I blame her - she's been through enough the poor kid! But she litterally kicked and screamed. Not like her!! She's usually so compliant. I had to lay on her legs while 2 nurses got the iv in. She has been complaining of a headache and now we know why!!

Tomorrow is her "unbirthday" and going away party. We're still going to hold it as scheduled, but I feel weird about it. I am going to use each one of these extra days the Lord has given us to the fullest.

Today at the hospital a pastor from Our Redeemer Lutheran Church came by and gave Karly the "prayer quilt" made for her. Total strangers who heard about her made it for her! That was so special!! It is beautiful. She now has 5 handmade quilts and blankets made for her - 3 by strangers! People are amazing. Gives you so much faith in humanity!! :)

Blessings & hugs to all,
Nancy

Wednesday, February 26, 2003 11:20 PM CST

Time for another update!

The time for Karly's transplant is drawing near....2 weeks from today. Today was Karly's last day at school and tomorrow will be my last day at work. I'm a stress kitty worrying about finishing tasks at work. I have to keep reminding myself that I can only do so much....the rest will have to wait 6 months (HA HA). Seriously, I hate to pass on work to others, so tomorrow will be a "kick butt" day at work.

At school today Karly was presented with gifts and large cards from every 1st grade class. I was in tears....people are so good to my baby!! The PTSA gave her a princess tent for her hospital room along with a toy lantern, slippers & some other goodies. Her teacher gave her lots of books and activites. One mom in the class made Karly a tote bag with every student's name embroidered on the bag with cute little stick figure kids. Ohmigosh it is something else!!! Amazing!! The generosity of everyone really got to me.

Friday Karly goes to the hospital for another CT scan, platelet transfusion & nuclear scan of her kidneys. Then its out by noon and off to Costco, back home to receive a handmade "prayer quilt" from Our Redeemer Lutheran Church.

Oooppps....Karly wants out of the tub, I gotta run!!!
More later!!

Love,
Nancy

Wednesday, February 19, 2003 11:06 PM CST

I was too tired last night to update you from the City of Hope but we did get home safely. I think things are getting to me a bit since I have had extreme fatigue in the evenings. Its been hard to get anything done!!

Karly's counts were at 14k again yesterday. Hard to believe they are so low because she looks pretty good. Not too much petechia, bruising or bleeding. She is FINALLY getting over the flu after 8 days of fever. She's still coughing, but she sounds better and better. She's finally eating again, if just a little bit.

We saw Dr. Loh today and updated him on our LA visit. I asked him if we could transfuse Karly before her party and our amusement park visits pre-transplant. He agreed, so she'll be admitted to the hospital for a platelet transfusion on Friday 2/28.

I only have a few days left of work and I'm getting STRESSED!!! I don't know how I'll finish everything. I need a clone!! Too much to do to get ready for our trip up to LA. Any suggestions would be appreciated.

Hugs,
Nancy

Monday, February 17, 2003 10:00 PM CST

Karly & I are at the City of Hope. We saw Dr. Falk today (I really like him!) at Kaiser Los Angeles for an update on what he is proposing for her treatment. Then we drove 45 minutes east to the City of Hope. We are spending the night at their Village and will be seeing a ton of people tomorrow. We have to get registered, see her transplant team, get measured by the radiation oncologist, etc. Her platelets are at a dismal 14k, so she MAY end up being infused with platelets - we'll see since she is pretty asymptomatic. Karly & I made stamped cards at the recreation center here. Art is such a theraputic thing. She's starting to cough so I'll be getting her in bed soon.

Love to all,
Nancy

Saturday, February 15, 2003 9:29 PM CST

Karly is still sick. She has been running a fever on & off (mostly on) since Monday. She is coughing up a storm and won't eat anything because it doesn't taste right. Poor kid! I'm pushing the fluids, but can't do anything to make her eat. I even bought a Baskin-Robbins ice cream cake for Valentine's Day, but she wouldn't touch it. I'm starting to get worried. She is so lathargic. I might take her back to the doctor tomorrow, or wait and see what Dr. Falk says on Monday.

Karly & I are off to Los Angeles on Monday. We see Dr. Falk at the Kaiser Sunset facility Monday afternoon. We will spend the night at the City of Hope Village before having a bunch of appointments on Tuesday at the City of Hope. Apparently they will be using some sort of radiation treatment on Karly. I'm upset, but I understand. I was really hoping to avoid radiation.

I only have 2 weeks left at work, and every day next week I have at least one doctor appointment. Our time is drawing near....

On a happier note, I have started creating our scrapbook of our vacation. I spent a couple hundred dollars on scrapbooking supplies (easy to do!) and am ready to create a masterpiece. I feel pressured to get it done in the next 2 weeks before we leave.

Tomorrow is my parents 45th Wedding Anniversary!! Isn't that amazing? They are an inspirational couple. We wish them a very happy anniversary!!!!

Love,
Nancy

Wednesday, February 12, 2003 3:52 PM CST

An overdue update of Karly & our Make-A-Wish trip.....

First the bad news. Karly is sick with the flu. Bummer! She has a fever (103.6 this morning) and a bad cough. We went to the doctor and at least know its not pneumonia. Her counts were all pretty bad, with only a 26k platelet count (her lowest ever). The other thing that came up was the results of her routine pre-transplant echocardiogram showed she has a heart defect called PDA - patent ductus arteriosus. A valve that was supposed to close after she was born didn't - causing a mumur and shunting of blood. Its not terribly serious, but will require heart surgery after the transplant. I am going to talk to Dr. Falk about it tomorrow when we meet with him in LA.

Now the good stuff....the Make-A-Wish Disney Cruise!!! Words cannot properly express how WONDERFUL and MAGICAL it was!!! The Disney Magic is a beautiful ship. 964 feet of fun!! The food was yummy! Between the 4 of us we gained about 30 pounds! Even skinny me gained a much needed 5 pounds (too much lost to stress). The service was of the highest quality - we loved our servers Barry, Adina and Donovan. There was plenty of top quality entertainment on ship. Karly loved the kids club and spent many hours there. If she wasn't at her club she was at one of the pools. She loved Mickey's pool which was only 18" deep and had a 2 story twisty slide into it. It was sooooo nice to sit by the rail, read a book, sip a soda and relax - not worrying about Karly or Kyle. The sea was gorgeous and luckily not too high of waves. The shore excursions were fabulous! We loved Grand Cayman and Cozumel, but most of all loved Disney's private island "Castaway Cay". It was truly paradise. Karly spent a lot of time in the water. The water was so crystal clear and pure....I hope the pictures (15 rolls) I took do it justice. Swimming with the stingrays was a highlight. But if you ask Karly, the highlight of the whole trip was at the private beach in Cozumel. They had a little zoo, and 2 monkey escaped from their cages. It was sooooo funny watching the Mexican men chase around the monkeys and the monkeys would tease them and the men would curse in spanish (I didn't translate that to Karly!) and run after them. What a hysterical site!! Karly and I bought handmade Mexican dresses that we wore that night to the Mexicalifragilisticexpialidocious night on the ship. Too too much fun!!

I'd highly recommend everybody take a cruise - and the Disney cruise is an excellent choice!!!

Hugs to all,
Nancy

Tueday, February 4, 2003 8:50 PM CST

I am writing this from the Disney Magic Cruise Ship. At 75 cents a minute I'll have to make it fast!! We are having the time of our lives!! Right now we are on our way from Grand Cayman to Cozumel Mexico. Today we spent a glorious day on Grand Cayman and swam with the stingrays. That was the experience of a lifetime!! No words to describe....I hope the roll of film captures a little of the wonder of this day. The kids are having a great time. This ship is amazing!! Lots to do and see. Kyle & I got seasick during dinner the first night, but have been fine since. I feel like a real cruising pro! No sunburns yet, but tomorrow is the test as we will be in Playa Del Sol Beach party for 5 hours. Should be a blast!!

We miss our family & friends - wish you could be here. But know we are having the time of our lives and can't wait to do this again!! Lots of pictures to scan in here next week.

Love to all,
Nancy

Thursday, January 23, 2003 at 11:02 PM (CST)

NEW PHOTO IN PHOTO ALBUM ! ! ! ! !

Make-A-Wish presented Karly with her wish on Tuesday. What a memorable evening!!! Ric & Nhu, her wish granters, came over with dinner, balloons, an ice cream cake and a bunch of goodies for the trip. They thought of EVERYTHING!! We will certainly have no worries on this trip. Karly goes to Dr. Loh on Monday so we'll know where she's at before we leave. We can hardly wait!

A heart-felt THANK YOU to all the folks at Make-A-Wish, especially our new friends Ric & Nhu, and all of you who make it possible for Make-A-Wish to make kids' dreams come true!!!

God Bless you all,
Nancy

Tuesday, January 21, 2003 at 12:31 PM (CST)

WHAT A WEEKEND!!!

I am finally getting a minute to sit down and catch you up on what's going on. We had a terrific weekend!! I am taking today off to take care of a sick boy (Kyle's been fighting the stomach flu since Sunday on & off). Karly is doing ok, but doesn't feel 100% either so we're staying home and getting some things down around the house.

Saturday we went whale watching with my brownie troop. Our group was 28, including 7 of the brownies & their families. It was an incredible trip!! We were blessed with a sunny, 70 degree day and a very successful trip. We saw 11 whales!!! We got close enough to see them playing and swimming underwater. Our trip took us about 5+ miles off the La Jolla coast for almost 3 hours. On the way back to shore, some dolphins decided to play with the boat!! It was AWESOME!! They were swimming out right in front of the boat and some were jumping in our wake. It was an amazing site being mere feet away from these intelligent and beautiful creatures. We also managed to see some playful seal lions and lots of birds. After the trip we went shopping with my mom to buy some cruise clothes (thanks Mom!!)

Sunday we went to Sea World. My parents paid for the kids to go in the "Dolphin Interaction Program". What a thrill for the kids!!! They got a 20 minute lesson on dolphins and then an hour in the water with the creatures! Kyle and Karly got to be junior trainers and touch, feed and play with dolphins. We got it on video tape and lots of pictures. I plan to scan the pictures and add it to this site soon. It was the fulfillment of a dream for Karly who wants to be a dolphin trainer when she grows up.

Monday we went to Knotts Berry Farm with our friends the Buxtons. We spent a warm day riding rides and catching up. It was great fun!!! We're so tired today.....

Karly is holding her own. We go back to the doctor next week before our cruise. And speaking of the cruise...Make a Wish comes tonight to present Karly with her WISH. More about that soon!!!

Love,
Nancy

Monday, January 13, 2003 at 06:12 PM (CST)

I took Karly to see Dr. Loh today, a day early, because she had a NASTY bruise from a fall on Sunday. She tripped on our front landing and fell on her hip on the hard tile floor. Amazingly enough, even though she looks terrible, her counts are UP!! Y E A H ! ! ! !

Her white count is up to 5.3, her red is 11.2/37, and her platelets are 42. WOW!! She has always gotten a boost from being sick, so thank God for her cold. We'll take it, whatever the cause.

This is a great way to start the week!!!

Saturday, January 11, 2003 at 04:48 PM (CST)

Hi friends!

Its Saturday afternoon and we're busily cleaning (when we're not watching football) and starting to think about our trip. I am so looking forward to the relaxation aboard the Disney Magic Cruise ship....it will be a much needed break before the hospital. Lots of wonderful memories to be made!

Karly is almost 100% over her cold. She's feeling better and looks ok. We're off to the pediatric hematologist on Tuesday, so I'll have some counts to report then.

In the meantime, not much news so I'll just say HAVE A NICE WEEKEND and please pray for the young man who is Karly's donor - that he stay healthy and be blessed by his wonderful gift!!!

Hugs,
Nancy

Saturday, January 04, 2003 at 09:40 PM (CST)

Still doing the happy dance over Karly's match!!!

But now reality is setting in....
So much to do and so little time to do it! We got a call from the City of Hope verifying that Karly's transplant will be done on March 12th. That means she'll be admitted on March 3rd. Oh boy! Less than 2 months away. I'm starting to organize my thoughts and plans for Karly's hospital stay and what needs to be done before we leave. Things like working with the school to complete 1st grade, packing, preparing information packets for friends and family, organizing my brownie troop for my absence, etc etc.

Any suggestions would be appreciated!! I'm keeping a list.

Karly's platelet count was 31k last week, but I have a feeling its gone up since she's been sick with a cold the past 2 days. She went to Sea World with Nana & Papa yesterday and had a blast!! They have annual passes and go a few times a year with the grandkids. I'm going to try and get Karly in with the "trainer for a day" program at Sea World. One of the many things I need to get done!! :)

God Bless y'all,
Nancy

Friday, January 03, 2003 at 09:03 AM (CST)

KARLY HAS A MATCH ! ! ! ! ! !

Amazingly, the first 2 people tested BOTH matched Karly 12/12. They chose a 23 year old man who is a 12/12 with her same blood type (A+). I am praising the Lord for this terrific news!!!

The plans are now rolling for a March 3rd or 4th admission to the City of Hope.

HAPPY NEW YEAR ! ! ! !
Nancy

Friday, December 27, 2002 at 09:01 PM (CST)

Hope everyone had a very Merry Christmas!! We sure did! We wanted to make sure this Christmas was extra special for Karly - just in case. Next year will be different, that's for sure.

Christmas Eve Karly had a visit from her Make-A-Wish wish granters Ric and Nhu. They are WONDERFUL people!! Really liked them.... Karly asked for a 7 day Disney Cruise to the western Carribean. Hope this works out!! If it does, we'll videotape everything so that she can relive the trip during her hospitalization. It will give her something to look back at and forward to. When she is all better, we'll do another cruise!!

Christmas day was special - opening presents, sharing the day with our family. It really was one of the best ones yet. Happy Birthday to our Savior Jesus Christ!!!!

Today Karly walked in the Big Bay Holiday Bowl Parade in downtown San Diego. My Brownie Troop carried banners. I hope she made it on TV! It was supposedly televised nationally since it is the second largest balloon parade (only Macy's is bigger). There were 100,000 people on the route - it was nuts! But the girls did great and Karly kept up well.

We go back to the hemo on Monday. I know she's dropped. Her moods have been very cranky, but no bleeding so we're probably still safe.

I should know next week whether any of the first 5 people to be tested were a match....praying and hoping so!!!

Hugs to all....
Nancy

Monday, December 16, 2002 at 08:57 PM (CST)

Greetings from the land of the sickies!! Thank God Karly is not one of us, but Kyle, Les & I have all had the stomach flu. UGH!! Mine was the worst. Les had to take me to the hospital last night because I lost the feeling in my face, arms & legs and my hands cramped up weird. Then I passed out. At the ER they put an IV in me and pumped me full of all sorts of good stuff. I actually walked out of there - amazing. Today I'm weak but better. Thank goodness Les didn't listen to me when I asked him to kill me all weekend! (it was that bad)

Today I managed to take Karly to her hemo/oncology Christmas party. Santa was there to give out gifts. Karly got an art set - perfect for her and taking to the hospital. We feasted on yummy catered food and all the kids got a stuffed animal and balloons (THANK YOU OPTIMIST CLUB!). RIght after the party was Karly's regular appointment. Her counts were lower but still acceptable. 4.3 white, 11.6 hemo, 34k platelets. We go back 12/30. I should know by then if she has a match from the first batch of testees also! That would be a wonderful new year's present.

Peace and love and HEALTH to everyone.....now I gotta go lay down......

Nancy

Sunday, December 01, 2002 at 12:52 PM (CST)

Good Morning! We're back from vacation. We had a TERRIFIC time!!!

We have some additional pictures on the web. Our pictures from our appearance on the Roger Hedgecock show can be found at http://www.rogerhedgecock.com/jacor-common/globalphotos.html?eventID=9698. We are in about 4-5 of the pictures. Anything to encourage blood donations and bone marrow registrants!!!

Back to our vacation....we were blessed with wonderful weather and a relaxing time. It was so great to see the whole family (my husband's side). We went to Mariposa, CA where my sister-in-law and brother-in-law own the "HAPPY BURGER" which has the biggest and best menu in the Sierras. We got there Wednesday night after a harrowing 8 1/2 hour drive. It normally takes 6-7 hours but the traffic through the Magic Mountain area was miserable. We got there just in time to check into our hotel and make it to Karaoke night at the local bar. We drank, sang and danced until 1am (WAAAAAAY past my bedtime!). Les & I got up and sang "I got you babe" by Sonny & Cher. UGH!!! But it was really fun and I'll defintely do Karaoke again.

Thursday was Thanksgiving and we just ate and chatted all day. It was wonderful catching up with everyone and enjoying the sunshine. The food was great but the company was better.

Friday the guys went shooting (hunting?) and the gals went shopping. Mariposa has lots of neat little crafty shops. We bought jewelry, Christmas ornaments, gormet food stuffs and house decorations. Plus lots of Christmas presents. Karly got a beaded necklace with dolphins on it that she hasn't taken off. Karly never left her cousing Kylie's side. It was so much fun for her to play and play with her beloved cousin who lives 600 miles away. Her other little (under 18) cousins Gage, Shelby & Cierra (plus brother Kyle of course) made the trip very memorable. She adored seeing her older cousins who she really looks up to - Darci, Josh, Vikki & Elissa. The kids enjoyed playing with the puppy and exploring the woods behind the house.

After more shopping and visiting, we left Mariposa at 2:40pm and got home at 10:40pm. Lots more traffic at Magic Mountain again, but finally made it home exhausted but happy.

Today we are resting, watching the Charger game (GO CHARGERS) and doing laundry. Tomorrow we're off to Knotts Berry Farm!!!!

I'm a bit worried about Karly because she looks like she's dropped. But I won't worry until she goes in on Tuesday for a cbc. I'll let her have fun tomorrow at Knotts and then see where she's at.

Hope you all had a blessed Thanksgiving. Indeed we have lots to be thankful for!!!

Love,
Nancy

Wednesday, November 27, 2002 at 12:06 AM (CST)

Tonight (Tues 11/26) we went to the San Diego Chargers Blood Drive. Over 2000 pint of blood were collected! Karly was featured on 2 radio stations, talking about the benefits of blood donation. We met some players, cheerleaders and other local celebrities. Karly looked adorable in her pony tails with blue and gold ribbons. She certainly stole some hearts!!!

Tomorrow we leave for vacation. YEAH!!!! We'll be back Monday night so I'll update then.

Have a safe and blessed Thanksgiving!!! So much to be thankful for.....

Thursday, November 21, 2002 at 11:10 PM (CST)

Today was a good day! Karly went back to Dr. Loh and her counts were good. Her platelets are 92k 3 1/2 days post-infusion. Her white count was up and her hemoglobin was up. YEAH!! I'll take all the good news I can. He cleared us to go to Mariposa next week for Thanksgiving. HIP HIP HOORAY! Karly can't wait to see her cousin Kylie.

Another good thing today was I finally found out the Kyle DOES NOT have FA. PRAISE JESUS!!!! A big load off my mind.

Les & I met with Pastor Tony tonight. It was wonderful!! He had some wonderful things to say and it was very encouraging. Our faith will really get us through this. He said one thing I'd like to pass on. None of what is happening to Karly is a surprise to God. He knows everything that has or will ever happen in her life. He holds her in His hands and has a wonderful plan for Karly. I am enjoying watching God work.

Good night!!
Nancy

Tuesday, November 19, 2002 at 09:34 PM (CST)

We're back home from the hospital. Karly was admitted Sunday night with bloody diarrhea. It was scary!! She was pooping a combination of blood, mucous and puss (sorry to be so graphic). Her platelet count was only 26k and her hemoglobin had dropped from 12 to 10.2. So they admitted her and gave her a platelet transfusion. I didn't want to have to do that, but it was necessary to control the bleeding (every transfusion lessens the success chance of the transplant from what I understand). Anyway, it raised her platelets to 141k!! Amazing - too bad it won't last. They were 120k by this am and her white count had fallen from 5 to 2.9. They treated her with malox, lots of fluids and rest.

After 48 hours we were released to come home. YEAH!!! Home never looked so good. Hopefully Karly can even go to school tomorrow if she feels like it.

The highlight of her hospital stay was the visit by the therapy dogs this afternoon. She had her picture taken with Ted E and Ryan. She played ball with Ryan (a 12 year old Shelty) and cuddled with Ted E (a 1 year old Bishon Frise). I look forward to a couple of years from now when all this is over and she can get a dog of her own.

God Bless and Good Night!!
Nancy

Sunday, November 17, 2002 at 12:30 PM (CST)

Just as I was getting ready to type here, Karly came back home from her bike ride to give me a dandilion flower. AWWWWWWW... typical Karly! She's such a sweetie. That makes all this so much harder.

My internet service has been down for a couple of days but seems to be ok today so I can finally update you. Thursday was our big day up in Los Angeles. We started the day by going to Knotts Berry Farm for 2 hours and eating lunch at the Chicken Dinner place before heading to meet the Bone Marrow Transplant team. We were really glad we did that first - it made us relax a bit and bring some joy into a tense day. Karly got to ride her favorite ride (the swings) even though she's 1 1/2 inches too short and we rode it twice. Mom's heart stopped while Karly let go and "flew" with her arms out. Its hard for me to let her do risky things, but I'm trying to keep her as normal as possible - a hard task.

Dr. Peter Falk and his staff are WONDERFUL!!!! We really like this doctor. Very blunt and talked a lot about the worse case scenario, but still warm and caring. We instantly trusted him with our baby's care. He's been doing pediatric transplants for 30 years. He didn't try to talk us into or out of the transplant. But he made it clear it was her best shot while clearly an aggressive move.

The good news - there are 193 potential matches for Karly. He said her chance of finding a good match is "EXCELLENT". WOW! What a load off our minds. I felt this huge weight off my chest to find that out. Actually Les is a 5/6 match for her, but the 1 allele that they don't match on is the most critical for GVHD (graph verses host disease) so he's our last-ditch choice. Kaiser will start calling in 6-8 people at a time to be tested - at a cost of $15,000 per test. WOH!! All in all, this transplant will cost about 1.5 million dollars. Karly's worth more than that!!!!

We are giving her a month off of tests and stuff. She goes back to Dr. Loh on Dec 16th (the day of the oncology holiday party) and we'll see where she's at. Her counts Friday were decent - 3.5 white, 12 hemoglobin, 3.1 red and 33k platelets - all very slightly up! I'll take up any day!!!

We are going ahead with the transplant in March. She'll be out of school until at least September. She has a 40-45% chance of surviving the transplant and going on to a more normal life. She even has a chance of having babies because they won't be using radiation (most likely) and will be using lower doses of chemo due to her FA. FA patients (because of their fragile chromasomes) are much more sensitive to chemo and radiation so they have to be careful.

We are staying strong for Karly. I still haven't cried, but Les and my parents are doing that for me. I'm staying thankful - thankful for the wonderful gift of my daughter, my parents, family, son, friends, church, work situation, new car, Karly's school, etc etc. I truly believe Karly will come through this with flying colors. We will be putting her through hell, but we'll be with her all the way.

Blessings to all....THANK YOU for your love and concern!!!

Nancy & family

Saturday, November 09, 2002 at 11:25 AM (CST)

Thank you all for your kind thoughts expressed in the guestbook! They really lift my spirits. I have really needed it this week as the day gets closer that we meet with the bone marrow transplant team. I got a FRUSTRATING phone call last night from one of the coordintors - our Monday appointment is cancelled!! UGH!! They want to reschedule for Thursday. Thursday is the worst day they could have picked - I already have 3 committments that day including much needed Brownie training. The appointment is for 3:30pm, so we'll be leaving downtown Los Angeles at 5pm (not a pleasant thought). At least Monday was a holiday and I was expecting lighter traffic. I asked her to check to see if Friday was available. That way we can spend the night and go to Knotts on Saturday for a little while. We get our pictures back from Walmart on Saturday between 3-6pm and have a baby shower at 5pm, so we couldn't stay all day. That goodness we have annual passes for Knotts - its been a great entertainment for us this year. I have to be careful with Karly, though. With her platelets at around 30, I don't want her jostled too much to cause internal bleeding of any kind. I hate having to worry about that kind of stuff, but its my world now...

Thank you all again for your thoughts and prayers. "The Lord is my strength and my song." He is getting us through this as only His love and His power can. I still have complete faith that Karly will get through this and go on to lead a full life. I'm sad to think that chemo will probably make her sterile - I had always dreamed of her having kids - she wants to be a mom so bad!! But the Lord has plans for her and its for good, not for evil. He is going to use her mightily!!!

Blessings to all,
Nancy

Sunday, November 03, 2002 at 07:57 AM (CST)

Its just before 6am on Sunday morning and I can't sleep. So many thoughts running through my mind. We have an appointment with the Bone Marrow Transplant doctor on Monday November 11th. Since Kyle is not a match for Karly, we are looking into stranger donation. I got a great idea yesterday - trying to tap into the Charger's Blood Drive! Its probably too late since it is in 24 days, but I wanted to try and at least have Karly there for PR.

Doing a bone marrow drive....sounds like a lot of work. I found some great resources on the web, so I have homework to do. I think I'll get Karly's picture taken today at the one hour photo studio at the mall so that I have a recent photo for the for the media. I know to meet Karly is to love her!!! My parents have been Charger season ticket holders since 1978, so maybe there's some pull there too. I can't wait to go to church today....so much to pray for!!

Any suggestions for drive ideas would be appreciated! I know I have a lot of people willing to help. I just pray they find a match on the registry so we don't have to go through all this. I don't really want Karly in the media spotlight.

Friday, November 01, 2002 at 11:32 AM (CST)

Karly saw Dr. Loh yesterday. She didn't have to get a blood test - YEAH!! She is pretty asymptomatic, so he decided to give her a break. That means no steroids yet either - double YEAH!!!

That's the good news, now the bad....Kyle is NOT a match for Karly. I am heartbroken. We meet with the transplant doctor sometime in the next two weeks to talk about our options. All I can do is keep praying and enjoy every day to the fullest.

Wednesday, October 30, 2002 at 07:47 PM (CST)

Karly was diagnosed with Fanconi's Anemia on October 24, 2002. FA is a very rare genetic disorder that leads to bone marrow failure. We are anxiously awaiting tests to see if Karly's brother Kyle is a match for her.

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