Sunday, September 19, 2004 10:43 PM CDT

Well, we made it through Jillian’s birthday last month – the hardest day of the year for us. It was better this year but not necessarily easier... if that makes any sense. I guess it will always be a sad day of “what-ifs”. However, there were some highlights to the week that made us smile.

The weekend before Jillian’s birthday, we went shopping and on a whim decided to go down to Marco Island for lunch. While we were driving to the restaurant, we remembered we had bought Jillian a brick at the Christmas Box Angel Statue. The statue is from the fictional book The Christmas Box. In the book, a woman mourns the loss of her child at the base of an angel monument. There are Christmas Box Angel Statues all around the country at various cemeteries. Jillian’s brick is at the base of the statue at a little cemetery on Marco Island. It has her name on it, dates, and reads “Our Line Leader to Heaven”. Every December, there is a candle lighting service at the statue for families that have lost children. We plan to go every year because it is a nice way to remember and honor your child around the holidays.

When we arrived at the cemetery, Nathan was a bit perplexed because it wasn’t Jillian’s cemetery. Actually, it is a really neat little cemetery. There obviously aren’t any rules about decorations because there are all sorts of pinwheels, wind chimes, stained glass charms and ornaments adorning the graves. Jillian would have loved it. She thought cemeteries were “cool” but that is a story for another day.

We showed Nathan the statue and Jillian’s brick. You are supposed to lay a white flower at the base of the monument so we picked one off the hibiscus shrubs and placed it in the angel’s hand. That is when Nathan burst into song, “Where is Jillian, where is Jillian, here I am, here I am…” At the end of his song he looked up at the sky and yelled, “I sang the song for you Jillian” as if he made this secret pact with her that he would sing this song for us. Ken and I must have had the biggest grins on our faces because it was so touching and so uncharacteristic of Nathan. It was as if Jillian was speaking to us through Nathan saying, “Don’t worry, I’m here, I’m not that far away.” Of course, Nathan was praised for his singing ability and got a very big hug from the both of us.

On Jillian’s birthday, we went to the midweek service at our church. Ken thought it would be a nice to have a little balloon release after the service by her tree. When we came out of the service, right in front of the church and over the Jillian tree there was a full rainbow with the top partially obscured by the clouds. Rainbows are pretty common this time of year but neither of us had seen one in several weeks. It was really beautiful. We stood by the Jillian tree, watched the three pink balloons from each of us go up into the sky, and when we were done, the rainbow was gone. The timing was perfect and again, we had to smile.

However, little did we know it was even more poignant of a moment than we had thought. Two days later, hurricane Charley uprooted and snapped the Jillian tree in half. An event that is symbolic on so many levels. Just another reminder of how fragile life is and how we should embrace what is beautiful in our lives today. Nevertheless, trees can be replaced and before Ken and I could arrange to replace the Jillian tree, a very nice man from our church had already gone to a nursery, hand picked out the same kind of tree, and had it planted in the same spot. Another reminder of how so many people have gone out of their way to help us and support us these past few years. It warms our hearts and once again, we have to smile.

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The new t-shirts are in for the 3rd annual Kids with Cancer Radiothon. Jillian’s design has been updated, and this year her photo is in on the back of the t-shirt. Jillian’s proud brother is modeling her “Cancer Bugs Me” t-shirt. Mel’s Diner is selling the t-shirts up until the day of the radiothon, which is October 29, 2004. The t-shirts are $10 and come in all adult sizes this year (S, M, L, & XL). All proceeds will go to the children’s cancer center at The Children’s Hospital of Southwest Florida (Jillian’s home away from home).

So go to Mel’s Diner and buy a t-shirt. If you don’t live locally and would like a t-shirt(s) mailed to you, please send us a check and we will be more than happy to pay the shipping and handling and send you a t-shirt:
Ken & Laura Lamparyk
1208 Forest Lakes Blvd.
Naples, FL 34105

We are forever proud of our little artist in heaven!

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Please keep praying for Jordan and his family http://caringbridge.org/il/jordan/

Saturday, September 11, 2004 9:48 AM CDT

Sunday, June 20, 2004 8:00 AM CDT

Happy Father’s Day to all of the Fathers out there!

All week I have been thinking about how Jillian would put on Ken’s glasses in the morning and say, “Now, I really look like my Daddy.” She may have gotten my blue eyes and my small ears but she definitely looks just like her Dad.

One thing I know for sure, Jillian loves her Daddy or “Handsome Dada” as she used to call him. My fondest memory of the two them together is actually at Duke. While we were there, Jillian missed him tremendously. She would get really upset if we talked about his flight back to Florida so we didn’t even mention it while he was visiting. However, on the day that Ken was to arrive, she drove me absolutely crazy. She constantly asked me all day long, “How many more hours until Daddy gets here? How many more hours until Daddy gets here?” I would also have to tell her exactly what we were doing all day until he arrived, “First we are going to clinic, then we will do laundry, then we will eat dinner, then we will watch a movie, then Daddy will call from the airport and then we will go and get him.”

“Say it again,” she would reply. She made me repeat this over and over all day long. Believe me; everyone at clinic knew that Jillian’s Daddy was coming that night. The excitement of a child on Christmas morning had nothing on the excitement of Jillian on the morning of Ken’s arrival.

We had it down to a science. Since Jillian couldn’t go into the airport, Ken would call as soon as the plane landed. By the time we drove to the airport, he would be waiting outside at the curb with his luggage. We would pull up to the curb and Ken would open the back door of the car where Jillian was sitting and say, “Hi Sweetie.” Jillian would be kicking her skinny legs up and down with excitement and with the most loving face and sweetest voice she would say, “Dadaaaaaa” (which is what she called him when she was in an especially loving and affectionate mood). At that exact moment, with Ken grinning from ear to ear, I could actually see his heart melting. Because as much as Jillian missed her Daddy, her Daddy missed her even more. I wish I could freeze that moment in time and somehow bottle it because it made my heart melt too. It still does.

I really think Ken’s job was more difficult than mine. It must have been incredibly hard for him to be away from Jillian. He also had to play single Dad to Nathan while we were gone and he did a great job. If you ask Nathan who’s his best friend, with no hesitation he answers, “Daddy.” Nathan has come a long way from the days when he would only play with Ken when I was in the room. When we first adopted Nathan, he was very wary of men because he had never been around them. That only lasted a couple of weeks before Ken became his best buddy.

Yes, one thing I know for sure, Jillian and Nathan sure love their Daddy and he loves them right back. A father’s love transcends heaven and earth. And when the day comes for Ken to join Jillian in heaven, I know she will be waiting for him, kicking her legs with excitement, but this time it will be Jillian who opens the door and greets her Handsome Dadaaaaaa.

Sunday, May 9, 2004 7:50 PM CDT

Happy Mother’s Day to all of the Moms out there! (Especially my Mom who has always been there for me through the bad times and the good)

What is a mother? If you look up “mother” in the dictionary, the first definition reads “a female parent”. But I think the true meaning lies further down the list - “of or like a mother, to be like a mother to”. Mother’s Day is really for anyone who has ever loved and cared for a child. I know Jillian had a lot of mother-like figures in her life and for that I am thankful.

So Happy Mother’s Day to all the birthmothers, adoptive mothers, stepmothers, foster mothers, grieving mothers, mothers-to-be, godmothers, grandmothers, mother-in-laws, aunts, sisters, single fathers, doctors, nurses, care providers, teachers, and close friends. Mother’s day is a day for all of us to collectively celebrate the unconditional love we have for our children and for our mothers and the love that they give back to us.

When Jillian relapsed and the future was uncertain, I tried to tell her everything that I wanted her to know. I repeatedly told how much she was loved and how proud we were to be her parents. But I think the most important thing I ever told Jillian was that I couldn’t have asked God for a better daughter. I told Jillian this on many occasions where she would reply, “Well, I couldn’t have asked God for a better Mommy”. Little did she know her response was the best gift she could have ever given to me. I will forever hold that memory close to my heart.

Being a mother is the hardest job I will ever have but the most rewarding. I have always said that I am the luckiest mother. I know what it is like to bring a child into the world and I know what it is like to adopt a child. They are both equally wonderful experiences and I am so proud to be Jillian and Nathan’s mother.

When people ask me how many children I have, I say one because I don’t want to get into the awkwardness of explaining the situation. However, in my mind I always say two because I do have two children - one on earth and one in heaven. I am Jillian’s Mommy forever. After all…angels need mothers too.


Mothers hold their children's hands for a short while, but their hearts forever. -Unknown

Sunday, May 9, 2004 7:50 PM CDT

Happy Mother’s Day to all of the Moms out there! (Especially my Mom who was always there for me through the bad times and the good)

What is a mother? If you look up “mother” in the dictionary, the first definition reads “a female parent”. But I think the true meaning lies further down the list - “of or like a mother, to be like a mother to”. Mother’s Day is really for anyone who has ever loved and cared for a child. I know Jillian had a lot of mother-like figures in her life and for that I am thankful.

So Happy Mother’s Day to all the birthmothers, adoptive mothers, stepmothers, foster mothers, grieving mothers, mothers-to-be, godmothers, grandmothers, mother-in-laws, aunts, sisters, single fathers, doctors, nurses, care providers, teachers, and close friends. Mother’s day is a day for all of us to collectively celebrate the unconditional love we have for our children and for our mothers and the love that they give back to us.

When Jillian relapsed and the future was uncertain, I tried to tell her everything that I wanted her to know. I repeatedly told how much she was loved and how proud we were to be her parents. But I think the most important thing I ever told Jillian was that I couldn’t have asked God for a better daughter. I told Jillian this on many occasions where she would reply, “Well, I couldn’t have asked God for a better Mommy”. Little did she know her response was the best gift she could have ever given to me. I will forever hold that memory close to my heart.

Being a mother is the hardest job I will ever have but the most rewarding. I have always said that I am the luckiest mother. I know what it is like to bring a child into the world and I know what it is like to adopt a child. They are both equally wonderful experiences and I am so proud to be Jillian and Nathan’s mother.

When people ask me how many children I have, I say one because I don’t want to get into the awkwardness of explaining the situation. However, in my mind I always say two because I do have two children - one on earth and one in heaven. I am Jillian’s Mommy forever. After all…angels need mothers too.


Mothers hold their children's hands for a short while, but their hearts forever. -Unknown

Thursday, April 8, 2004 11:28 AM CDT

Easter is the season of new beginnings. It is a time to celebrate life and renewed hope. Remember every day with our children is a blessing and thank God for the gift of eternal life. For those of us who have lost loved ones, take comfort in knowing we will see them again in heaven.

This Easter has special meaning for us. Never before has the fact that Jesus defeated death been so poignant. We miss our daughter terribly, as do many other parents …and sons and daughters, brothers and sisters, husbands and wives, and close friends. But our loved ones do live again; more wonderfully than they ever could have here. And even though we wish they were still with us, they no longer need to walk this earth, as Jesus did for a short while before he returned to heaven.
The loss of someone so dear to us increases our desire to get to heaven, so we can be with them. The good news is… that’s what God has wanted all along. And the more we can keep our minds and hearts focused on this reality and depend on Him to help us, the more we are able to endure their absence, and live our time here with purpose.

“Thank Heaven for Easter and thank Easter for Heaven!” - Carol Barbieri


Happy Easter Jillibean!

Thursday, February 26, 2004 8:52 AM CST

I will never see my little girl get married but I do have this wonderful picture of her in a wedding gown. It’s my favorite picture and it was taken at the hospital. It’s hard to believe that she had just gotten sick from her chemo right before the picture was taken. But that was Jillian; give me my nausea medicine so I can go play. Cancer was just an inconvenience to her.

To make her scheduled hospital visits fun, I used to let her dress up. I would pack her princess outfits, Disney costumes, and jewelry to wear around her room. However, when she wore her wedding gown, she liked to walk around the atrium of the hospital and pretend that she was walking down the aisle to get married. She would make me sing “Here Comes the Bride”…well not actually sing but go “Dum, dum, da, dum”. According to Jillian, God did not bless me with a very good voice. She was right.

Jillian would then do a combination wedding/graduation march. When she was done marching I would perform a mock wedding - marrying her to one of her beanie babies or whatever stuffed animal was hanging from her IV pole. Many people witnessed the event but I never felt silly because she was having so much fun. Jillian didn’t like being the center of attention, but often she was because she was so funny. She just wasn’t aware of it.

We had a beautiful tree dedication ceremony for Jillian last month. The Naples Rotary donated a pink flowering Hong Kong Orchid tree to our church in Jillian’s memory. They planted it right next to the little white chapel, which is often used for weddings. Jillian would be pleased with that. I placed her wedding gown picture at the base of the tree during the ceremony. It was perfect. Family and friends were invited along with Jillian’s playmates. Two ministers spoke and we had a pink balloon release. It wasn’t a sad occasion but a touching one. It was very nice of the Rotary and our church to put the ceremony together and Ken and I were extremely grateful.

The other day I noticed the tree was starting to bloom, so I went over and picked a flower off of one of the branches. I noticed it was kind of a pink/purple color and I could hear Jillian saying, “Actually Mommy, it’s magenta.” Pink is Jillian’s favorite color but she always said she liked red, yellow, and magenta too. Jillian would also correct us when we would say something was pink or purple when it was actually magenta. It only seems fitting that her tree, which is planted next to the wedding chapel, has magenta colored flowers.

It is so nice to look over and see the tree when we go to church or when I pick Nathan up from preschool. Nathan always asks me when we are walking out of his classroom if he can run to the “Jillian tree” and back. Anything that wears out an active 3-½ year old is fine with me. So that is our little routine now when I pick Nathan up from school. I watch him dash across the field, touch the Jillian tree, look at me, smile, and run back. I can’t help but think when I watch Nathan touch that tree, that Jillian is watching him too. I can’t help but feel at that particular moment, Jillian is all around us. And as cliché as it might sound, life goes on. The tree will grow up and so will Nathan. Someday we will watch him get married knowing that Jillian is watching too. Somehow our lives here will go on.

Hey Jillibear,
How special you are to have a Jillian star and now a Jillian tree. We think your tree is beautiful just like you. We love you to the stars and back Sweetie. We always will.

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THANK YOU

A special thank you to Tracy, John, and Jack for running in marathons to raise money for cancer research in memory of Jillian. Tracy ran in the Disney marathon, which couldn’t be more fitting, as Disney was Jillian’s favorite place in the whole world. John ran in a marathon in Hawaii and Jack ran in Ireland. You all have pretty much covered the globe. You have no idea what it means to us to know that Jillian touched so many lives.

Another special thanks to Melissa. She took the wedding gown picture of Jillian and is also running in a marathon in memory of Jillian. Melissa’s sister Whitney had a transplant at Duke 6 years ago and she is doing great. Their family has been such an inspiration to us. Their journey along with ours, reminds us that God has a special plan for each and every one of us.

Thank you to everyone still donating in Jillian’s name, and for signing the guestbook. We really do appreciate your love, support, and thoughtfulness.

Wednesday, December 31, 2003 4:48 PM CST

We just want to wish you all a happy and healthy new year.

I have to admit that it is very hard to let go of 2003. It was a year of great hope and utter disappointment. Jillian went from being my little girl to my best friend and roommate. I will forever cherish the time we spent together this past year. She grew up so fast right in front of our eyes as if she was making up for the time that she wasn’t going to be here with us. She gave us a brief glimpse of the spunky but pensive and caring young woman she was to be in heaven. We watched Jillian become an old soul - a sign that she was ready to go.

Letting go of Jillian was the hardest thing that we will ever have to do. But when we think of how sick and miserable she was at the end of her life and how happy and healthy she is now, we can only be thankful that her battle with leukemia is over. We only wanted what was best for Jillian and we turned to God for the answer.

A good friend gave me the article below (Thank you Sarah!). When I get sad or when I feel like I am slipping backwards, I read it and I know what I am feeling is completely normal. As we enter a new year, I hope this article can help others who have lost a child.

NEW YEAR'S RESOLUTIONS FOR BEREAVED PARENTS

I Resolve:

That I will grieve as much and for as long as I feel like grieving, and that I will not let others put a timetable on my grief.

That I will grieve in whatever way I feel like grieving, and I will ignore those who try to tell me what I should or should not be feeling and how I should or should not be behaving.

That I will cry whenever and wherever I feel like crying, and that I will not hold back my tears just because someone else feels I should be "brave" or "getting better" or "healing by now".

That I will talk about my child as often as I want to, and that I will not let others turn me off just because they can't deal with their own feelings.

That I will not expect family and friends to know how I feel, understanding that one who has not lost a child cannot possibly know how I feel.

That I will not blame myself for my child's death, and I will constantly remind myself that I did the best job of parenting I could possibly have done. But when feelings of guilt are overwhelming, I will remind myself that this is normal part of the grief process and it will pass.

That I will not be afraid or ashamed to seek professional help if I feel it is necessary.

That I will commune with my child at least once a day in whatever way feels comfortable and natural to me, and that I won't feel compelled to explain this communion to others or to justify or even discuss it with them.

That I will try to eat, sleep, and exercise every day in order to give my body strength it will need to help me cope with my grief.

To know that I am not losing my mind and I will remind myself that loss of memory, feelings of disorientation, lack of energy, and a sense of vulnerability are all normal parts of the grief process.

To know that I will heal, even though it will take a long time.

To let myself heal and not feel guilty about feeling better.

To remind myself that the grief process is circuitous–that is, I will not make steady upward progress. And when I find myself slipping back into the old moods of despair and depression, I will tell myself that "slipping backward" is also a normal part of the grief process and these moods, too, will pass.

To try to be happy about something for some part of every day, knowing that at first, I may have to force myself to think cheerful thoughts so eventually they can become a habit.

That I will reach out at times and try to help someone else, knowing that helping others will help me to get over my depression.

That even though my child is dead, I will opt for life, knowing that is what my child would want me to do.

By Nancy A. Mower TCF - Honolulu, HI

To our Jillibear, we don’t have to wish you a happy and healthy new year because we know that you are fine. However, we will never stop telling you how much we love you - to the stars and back Sweetie!

Monday, December 8, 2003 10:56 AM CST

Everyday is a struggle, but when we look beyond our grief and disappointment and try to see things from God’s perspective, we know in our hearts that our daughter is truly one of the lucky ones; whisked to heaven in the “express lane”, if you will. Her hardship lasted for 2-and-a-half years, and her life not quite 6 years, but now she will never know hardship again. She has already achieved what the rest of us must continue to strive for. Whenever we are able to grasp this amazing reality, we are joyfully thankful to our loving Father for looking on Jillian with such favor.

My First Christmas in Heaven

I see the countless Christmas Trees
Around the world below
With tiny lights
Like heaven's stars
Reflecting on the snow

The sight is so spectacular
Please wipe away that tear
For I am spending Christmas
With Jesus Christ this year

I hear the many Christmas songs
That people hold so dear
But the sounds of music can't compare
With the Christmas choir up here

I have no words to tell you
The joy their voices bring
For it is beyond description
To hear the angels sing

I know how much you miss me
I see the pain inside your heart
But I am not so far away
We really aren't apart

So be happy for me dear ones
You know I hold you dear
And be glad I'm spending Christmas
With Jesus Christ this year

I send you each a special gift
From my heavenly home above
I send you each a memory of
My undying love

After all "love" is the gift
More precious than pure gold
It was always most important
In the stories Jesus told

Please love and keep each other
As my Father said to do
For I can't count the blessing
Or love he has for each of you

So have a Merry Christmas
And wipe away that tear
Remember I am spending Christmas
With Jesus Christ this year.

Author Unknown

To our Jillibear, Christmas will never be the same without you but in our hearts we are so happy for you. We can only imagine how wonderful it must be to spend Christmas in heaven. If we try really hard, we can almost hear your little voice saying, “You know what? Christmas in heaven with Jesus is really cool.” Merry Christmas Sweetie!

See New Photos

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Please pray for our little friend Nicholas and his family. He and Jillian had surgery at the same time and became friends in clinic sometimes having school together. He is a sweet boy who has no problem just coming over to you and sitting on your lap. He is having a rough time right now and his family needs your prayers http://www.caringbridge.org/nc/nicholascastillo/

Monday, November 24, 2003 12:24 AM CST

Happy Thanksgiving (a little early) Everyone!

We know the holidays are going to be rough this year without Jillian. Ken and I have had many discussions on how we want to grow from this experience. We know as wonderful as our old life was with Jillian, we can’t go back to it. We so badly wish we could but we can’t. We also know that we can’t stay where we are because remaining stagnant in grief would be detrimental. So we embark on our new life together. Jillian may not be with us physically but she is very much a part of our lives spiritually. So as Ken, Nathan, and I begin our new life together, the three musketeers with a guardian angel, we want to take the time to express how thankful we are for everything that we have.

Thank you God for

-our wonderful family and friends who have always been there for us. We would not have been able to endure this difficult journey without their love and support.

-allowing us to be the parents of such an amazing little girl. She taught us more about love and life than we thought possible.

-bringing Nathan into our lives. He came to be with us at just the right time. Even during our saddest days, he brings us happiness and joy.

-our loving and caring church family that has always reached out to us. We never even had to ask.

-the doctors and nurses at Duke, and especially here in Florida, for taking such good care of our little girl.

-the transplant families we met along the way. We met so many wonderful people and we are forever bonded because of our similar journeys together.

-the brave children we met on our journey. Some are walking miracles that give us all hope. Others were called home to you, to do bigger and better things.

-the complete strangers who followed our story, left comforting words, and sent thoughtful gifts. It showed us how the world could be a compassionate and caring place.

-for taking our little girl into your arms and keeping her safe, happy, and cancer free.

-for everyone who has prayed for us and continues to pray for us.

-for promising us eternal life so we can all be together again someday.


To our little Jillibear, remember how you used to walk outside on a nice day and say “Thank you God for this beautiful day”. We try to remember to do that too because you taught us so many wonderful things! We love you and miss you Sweetie.

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A special thank you to the Paquette family for the wonderful book you sent to us.

Our little friend Tommy Bennett recently earned his angel wings. Please stop by his web page and sign the guestbook and let his family know that you are thinking of them
http://caringbridge.org/ca/bennettboys/

Monday, November 10, 2003 8:44 AM CST

Thank you to everyone who bought one of Jillian’s t-shirts. I lost count but I know I sold over 30 t-shirts. The radiothon was a big success this year. Over $142,000 was raised for the hematology/oncology center at The Children’s Hospital of Southwest Florida. Ken and I were very touched to see that they were selling little teddy bears wearing t-shirts that read “Cancer Bugs Me – Jillian”. They even had pins made with her artwork on it. We are so proud of our little artist.

Life is still a struggle without Jillian. I guess it always will be but hopefully as time goes on it will get a little easier. In many ways it was harder having Jillian here with us knowing she was dying. I remember a recent conversation Jillian had with her Papa in the hospital. Her cousin was saying that she was going to be a ballerina when she grew up. Jillian said “Papa I might be a ballerina when I grow up too.” What do you say to your child when you know she is not going to make it to her 6th birthday? You say, “You can be whatever you want to be when you grow up” but in your mind you add the words “in heaven”.

When Jillian was admitted to the hospital in Florida for the last time, they put a small pink bracelet on her arm to indicate her blood type. Jillian hated wearing hospital bracelets. She was always taking them off and sometimes getting in trouble for it. After Ken and I signed the DNR papers, they had to put a big purple bracelet on her other arm to indicate that we did not want her resuscitated. This was important because our feisty girl was still getting out of her room up until just hours before she passed away. If something happened to her out in the hallways of the hospital, the staff would know what to do or what not to do. When the nurse came in to put the bracelet on her arm that night, Jillian must have noticed the look on my face because she said to me, “That’s okay Mommy. I don’t mind wearing the purple bracelet because it matches my pink one.” What do you say to your child when they put a big DNR bracelet on her wrist? You say, “I’m glad you don’t mind Sweetie because I know how much you hate wearing those things.”

Along with hospital bracelets, Jillian hated hospital beds. She complained that hospital beds were too scratchy so she slept and played on the parent bed. At Duke she had no choice but here in Florida, they pretty much let Jillian do whatever she wanted to do. At one point when she was resting on the parent bed that last week, she turned to me and said, “When I go back to school Mommy you can go back to work”. What do you say to your child when you know she is never going back to school? You say, “Don’t worry about school and I don’t need a job because my favorite job in the whole world is taking care of you.”

And when your child knows the leukemia is back again, and no one seems to walk into the room with good news anymore, and she probably knows more than you are willing to admit to yourself and she says to you “Promise me that we will all be together forever.” What do you say to your child? You say, “I promise we will all be together forever” but in your mind you add the words “in heaven”.

To our Jillibear, remember how you always prayed for the all the sick children. It must be working because your picture is still inspiring people to help other children fight cancer. We are so proud of you. Remember a promise is a promise. Until we are all together forever, we love you to the Jillian star and back.

Please stop by the guestbooks of our most recent angels and offer your support

Princess Madison http://www.caringbridge.org/nc/princessmadison/
Taylor http://caringbridge.org/va/taylor/
Noah http://www.caringbridge.org/hi/noah/
Manny http://www.caringbridge.org/sc/mannymiramontes

And some of our other friends could use some extra prayers too

Tommy http://caringbridge.org/ca/bennettboys/
Cody http://www.forcody.org/

Thursday, October 16, 2003 11:05 AM CDT

Please pray for our sweet little friend Madison who has relapsed for a second time after transplant http://www.caringbridge.org/nc/princessmadison/

and our little buddy Tommy who has respiratory issues and a viral infection after his third transplant
http://caringbridge.org/ca/bennettboys/
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I really like the picture above for many reasons. Jillian is 4 1/2, her favorite age. She is in remission and she is at her favorite place in the whole world, Disney World. Most importantly, Jillian is surrounded by angels. This is how I picture her in heaven except she is wearing a pink dress with matching sequin shoes.

One time during transplant Jillian asked me if you are ever sad in heaven because you miss your friends and family. I told her you are never sad in heaven. It is a beautiful and peaceful place. You get to watch over your loved ones and greet them when they come to heaven. I told her I would be there to greet her someday but she didn’t like that idea at all. “No, no, no, I want to be there first. I’ll watch over you,” she said. If you think about all of those Disney movies (Bambi, the Land before Time, Cinderella, Snow White, The Little Mermaid, etc.) the mother has died before the story begins or dies during the story. Jillian was always worried that I was going to die. I am glad that Jillian will never have to grieve. She will never have to go through what we are going through. I always wanted to take her pain away. I always wanted to trade places with her. Maybe I have.

It was such an innocent conversation but looking back it was very meaningful. “What do mean you are always happy”, she said. I told her to remember back when we left for Duke. We stopped at McDonalds for lunch but we told her we weren’t going to the hospital the next day, we were going to Disney World and that night we were going to a character dinner. I’ll never forget that day. Jillian just looked at us with her eyes wide open and a big grin on her face and squealed, “This is the best day of my life!” I told her to remember how happy she was at that particular moment because that is how you feel in heaven all the time. Well, she liked that idea and our conversation about heaven was over for the time being.

Truthfully, I think that day was one of the best days of our lives. Jillian stood there with her Happy Meal, patches of baldness and scraggly hair, chubby steroid cheeks, leukemia lurking in her body, her lip still swollen from falling face first on the tile floor the night before, and her front tooth missing from having it pulled out that morning. None of that mattered because she was going to Disney World and it was the best day of her life. Although she always said it was unfair that she had cancer, Jillian never felt sorry for herself and she always found the silver lining in any situation. She taught us a lot in her short life.

To our Jillibear, you now know more about heaven than us. Until you greet us there someday, we love you to the stars and back. We always will.

A big thank you to everyone who has purchased one of Jillian’s t-shirts. All proceeds go to hematology/oncology center at The Children’s Hospital of Southwest Florida. They are still available until October 24th. Another thank you to those of you still donating in Jillian’s memory to Caringbridge, the Candlelighters of Southwest Florida, and The National Children’s Cancer Society. They are all great causes.

Sunday, September 21, 2003 7:44 PM CDT

UPDATE: the sizes are adult S,L,XL. They must not have sold many mediums last year)

The nice folks at WOLZ and Mel’s Diner asked us if they could use Jillian’s design again this year on the t-shirts for the 2nd annual “Kids with Cancer Radiothon”. Ken and I were very touched by this and would do anything to help The Children’s Hospital of Southwest Florida. Jillian practically spent ½ of her life there. The doctors, nurses, and staff are like family to us. They were wonderful to Jillian and treated her like a princess.

They currently have a 6-bed inpatient pediatric oncology unit but are expanding it to a 12-bed unit. I can certainly vouch for the fact that they need more beds. There were many times when Jillian was in the hospital and all the rooms were full. A couple of times we were moved to the general pediatric unit after completing her chemotherapy because they needed our room.

The hospital is also building a separate playroom for the oncology kids because children undergoing chemotherapy have compromised immune systems. Jillian would have loved that. When she wasn’t hanging out behind the nurse’s station playing, coloring, and waiting for her doctors to send her a “tube” of candy, she was in the playroom. We always had to be careful of the other children using the playroom.

As you can see in the picture above, Jillian’s proud brother Nathan is modeling her “Cancer Bugs Me” t-shirt. Mel’s Diner is selling the t-shirts up until the day of the radiothon, which is October 24, 2003. The t-shirts are $10 and come in adult sizes S, L, & XL. All proceeds will go to the children’s cancer center at The Children’s Hospital of Southwest Florida (Jillian’s home away from home).

If you don’t live locally and would like a t-shirt (s) mailed to you, please send us a check and we will be more than happy to pay the shipping and handling and send you a t-shirt:

Ken & Laura Lamparyk
1208 Forest Lakes Blvd.
Naples, FL 34105

I remember Jillian telling me that this year her picture for the annual Brighten My World Art Project was going to be titled “Cancer Sucks”. This was after transplant and after she relapsed. I told her although I agreed with her statement; we might have to tone that one down a bit since the pictures are displayed in the hospital. One of our favorite activities while staying at Duke was sidewalk chalk. Jillian liked to draw rainbow swirled lollipops on the sidewalk at our apartment. It was then that we came up with the idea “Cancer Sucks Lollipops” for her picture this year. Unfortunately, she didn’t get to draw that picture. Since siblings can enter artwork too, maybe Nathan can draw it for her in a few years.

To our little artist in heaven, we are so proud of you Jillibear!

Tuesday, September 9, 2003 8:36 AM CDT

I thought I would temporarily post a picture Jillian drew on our phone message chalkboard shortly before we left for Duke. Ken never erased it while we were gone. It is still on our chalkboard but we took a picture because eventually we will erase it. I remember Jillian explaining to us that Jesus is sad on the cross because he is suffering but he is happy when he is rising to heaven. A picture is worth a thousand words.

I wanted to update the web to let everyone know we are doing okay. Some days are better than others. It helps when people say that we will always have the memories and she will live in our hearts but I feel as if they are not completing the sentence. I want to hear that we will see her again someday and that whether we live to be 6 or 60, our time here is so miniscule in comparison to our eternal life together. I know we don’t need someone to tell us this. Our faith is strong and in our hearts we know this is true.

Nathan is doing well. He likes to look at Jillian’s picture on the computer. Sometimes he hugs the monitor and kisses the screen. It’s cute. He still thinks tall buildings are hospitals but he no longer asks to see Jillian when we drive by one. One thing Nathan used to do that annoyed Jillian was to say “Hi Jillian, Hi Jillian, Hi Jillian” over and over whether he hadn’t seen her in weeks or it had just been a few minutes. We would always tell Jillian to just say hello back. She would usually reply, “Yeah but it won’t make him stop saying it ”. We would also tell Nathan that it was very nice of him to greet his sister but he only had to say hello once.

Two weeks ago Nathan and I were pulling into the driveway and completely out of the blue Nathan started waving out the window yelling “Hi Jillian, Hi Jillian, Hi Jillian”. So I asked him if he saw Jillian. He said “I see Jillian right there” and he pointed towards the edge of the front lawn. Halfway joking I asked him what she was wearing. He told me a hat. I immediately thought of the two baseball hats she got at Disney World on our way to Duke - a pink princess hat and a purple and pink Minnie Mouse hat. She wore them all the time. I found myself wondering which one she was wearing and then how crazy I must be for even entertaining the idea.

Later that night we went to a baseball game and I told Ken about Nathan seeing Jillian. Mostly explaining how odd it was because we weren’t talking about her at the time just listening to music in the car. He was really waving like he saw someone. Nathan is as chatty as his sister. When he sees a fire truck, or a baby, or a rock on the ground he tells you. He tells you about everything he sees. When we got home from the game we all stood in the driveway. Ken asked Nathan if he saw Jillian that day and he said yes. So Ken asked him where he saw her and he said “tree”. We asked him which tree and he pointed to our neighbor’s grapefruit tree, which is right on our property line and exactly where he had waved and pointed to earlier that day.

Our neighbors have always told us to help ourselves to the grapefruit tree. The tree produces more grapefruits than they could ever eat. I remember picking Jillian up and letting her twist the grapefruits off the tree. Sometimes she would throw or kick around the ones that had fallen on the ground. I had forgotten about that.

I don’t know what Nathan saw that day but I like to think it was Jillian playing around the grapefruit tree. I can’t even begin to describe how much we miss her and how much it hurts sometimes. We talk about her all the time usually laughing because we have so many good memories. So I will leave you with another good memory - a little game Jillian and I used to play loosely based on the book “Guess how much I love you”:

Hey Mama guess what?
What?
I love you.
How much?
To the moon and back.

Hey Jillian guess what?
What?
I love you.
How much?
To the stars and back.

Jillian usually finished our game with a joke about the planet Uranus but I won’t go there. You can use your imagination. However, not to mention it would do our feisty girl a great disservice.

Until we meet in heaven Jillibear, keep sending us all those beautiful butterflies, rainbows & pink sunsets!

Monday, August 11, 2003 10:35 PM CDT

(New Photos – I posted a few new ones that capture our feisty girl’s personality.)

Happy Birthday Jillian! You would have started kindergarten on your birthday today.

This is another event that I planned in my head on one of those long clinic days at Duke. I was going to have a party for Jillian with her two closest friends, Amanda and Megan, and her best friend Marissa. It had to be small and everyone had to be healthy because of her immune system. It was going to be at one of those paint your own pottery studios or at a fabric store where they do arts and crafts with the kids and you just bring a cake. Our options would be a bit limited but it would be fun.

The funny thing about Jillian turning six was that she did not want to talk about it. When I talked about a party or her birthday coming up in a few months instead of being excited, she would get sad or even angry and say, “You know I don’t want to talk about my birthday”. When we asked her why she didn’t want to be six, she said she was afraid that she wouldn’t like Disney World anymore and growing up didn’t sound like a lot of fun. I told her I love Disney World and her dad and I went several times (a perk of living in Florida) before she was born and I even went when I was pregnant with her. I told her to ask anyone at the clinic over the age of six if they still liked Disney World so she asked Dr. Kurtzberg when she came in to see her one Tuesday. Dr. Kurtzberg didn’t answer her she just turned her head and showed her the earrings she was wearing – Mickey Mouse earrings. Almost every Tuesday after that when we saw Dr. Kurtzberg, Jillian always checked her ears (sometimes by grabbing her face and twisting her head from side to side) to make sure she was wearing the Mickey Mouse earrings.

Even though Jillian was assured that she would always love Disney World, she did not want to be six. She didn’t want to grow up; she didn’t want to move out of the house; she did not want to get a job because she was afraid she wouldn’t like it. Jillian wanted to live with us forever and be a mermaid. It had nothing to do with Disney World and had everything to do with having cancer.

When Jillian relapsed the first time, she regressed for a couple of days and talked like a baby. It was her way of coping. She told us for several months that she wanted to be four again. Who can blame her, four was great. She was in remission and she hadn’t been in the hospital for over a year. Jillian looked and felt great. She was going to pre-school and had her favorite teacher. She was taking gymnastics with her best friend and was singing in the children’s choir. Life was great.

Shortly after she turned five she relapsed, and all that ended. She was back in the hospital getting stronger chemo and this time her hair was falling out. Jillian had to be taken out of school and gymnastics. She had to live in another state away from her dad and brother while she received and recovered from a cord blood transplant. Four was great, five was lousy, and turning six scared her because it was probably going to be even worse. I had high hopes for Jillian turning six, but it included her being healed here with us and not in heaven.

Well Jillibear, I think turning six in heaven will be even better than being four here with us. Here are our birthday wishes for you in heaven Sweetie because we know these are the things you wanted:

- you get to trade in your angel wings for mermaid fins and swim with the dolphins for a day
- your hair is blond, long, and wavy again and your steroid cheeks and belly are gone (although we always thought you were beautiful no matter what)
- you learn to ride your bike without training wheels
- you learn to read all of your favorite books on your own
- you get to go to all of the amusement parks, waterslides, science museums, and butterfly houses that you want
- you get to picnic in the most beautiful gardens
- you are singing with the best children’s choir in heaven
- not only are you taking gymnastics but those ballet lessons you wanted too
- you have a new pink dress with matching sequin shoes and purse
- you are twirling and dancing to your favorite music (the cha-cha and famous booty dance included)
- you are watching your favorite movies especially Finding Nemo which we never got to see
- you are playing all those practical jokes on people that we talked about
- you are painting rainbows, flowers, and butterflies
- you got the Shamu cake you wanted with your favorite cotton candy flavored ice cream
- you have that pink bedroom with the mermaid theme you wanted
- you are watching over us because you always said you would

We missed you on our trip to Maine but I know you were there with us. I hope you liked the sea glass we picked for you on the beach. Mermaids love sea glass. Our lives would be so much better if you were here with us, but we know your life is better where you are now. Happy Birthday in heaven Jillian!

Tuesday, July 29, 2003 10:14 PM CDT

Just a quick update, since it’s been over a week… (This is Ken.)

Our sincerest thanks to all the people who have made donations in Jillian’s memory to Candlelighters, the National Childrens’ Cancer Society, Caring Bridge, and the Leukemia & Lymphoma Society. All of them, in different ways, really do help ease some of the difficulties faced by cancer families. We are also thankful for and continue to be encouraged by all the cards, prayers and thoughts and gestures on our behalf.

Thanks to Klair and the Candlelighters for their annual family outing at SunSplash water park this past Sunday. We went the last 2 years and Jillian loved it. We had been hoping to go this year, so we took Nathan, and we all had fun.

Our faith, our memories, and your prayers give us strength. Please continue to pray for the other kids and their families still fighting the battle.

We will update again, probably August 11th, as that would have been Jillian's 6th birthday. We plan on sending her some more pink balloons.

"Hey Jillian guess what?"
"What"
"We love you!"

Saturday, July 19, 2003 8:29 AM CDT

Happy Adoption Day Nathan!

It was one year ago today that we finalized our little buddy's adoption in Belarus although it seems like he has always been here with us. I still tell Ken that I am one of the luckiest mothers in the world. I know what it is like to bring a child into the world and I know what it is like to adopt a child. I have had the best of both worlds and I can honestly say the love and pride that we have for both of them is no different.

Bringing Nathan home was a huge adjustment for Jillian. We didn’t bring home a helpless little infant but a 20-month-old toddler that immediately started getting into her things. We were all adjusting and I do have some regrets when I look back. I know I could have been more patient and understanding with Jillian and handled the situation better. I hope she knows that I am sorry.

Jillian asked me on a couple of occasions why she fights with Nathan. I assured her that is what real brothers and sisters do. I told her that it is hard to get along when you are cooped up in a hospital room, or a small apartment, or when you are taking steroids or don’t feel well. I pointed out to her that when we were out and about, she and Nathan got along fine. I reminded her of the times we went to the playground, or the park to play soccer, the beach, boating, swimming in the pool, Sea World for her birthday, hiking through Duke Forest, Duke Gardens, Fearrington Village etc. Not only did they get along fine, they played together very nicely.

She told me on our drive back from NC and once again in the hospital here in Florida that she really loves Nathan and that she is glad that he is a part of our family. She told me that she wanted him to come to heaven with us. I told her that we were a family and families stick together and he would definitely be in heaven with us. She replied “like a bunch of bugs all snug in a rug”. I like that thought of all of us in heaven snug as bugs in a rug. I am so glad she told me that. It gives me some peace of mind. She told me on several occasions that she loved Nathan but it usually started out “Even though he is annoying…” but that is Jillian for you and I wouldn’t want her any other way.

Jillian was with me when we bought the Happy Adoption Day book that we are going to give to Nathan today. One of our favorite activities in Durham was to stroll up and down 9th street. Sometimes we would have lunch and Jillian and I would go into the small shops as long as they were not crowded. The shop owners on 9th were really getting to know Jillian. On our last jaunt down 9th street we went to the children’s section of the bookstore, as we had done before on several occasions. Jillian would flip through the books and I would read a couple of them to her and maybe buy one for her too. When I found the book for Nathan, I knew it was perfect and Jillian was content with the fact that we were buying a book for Nathan that day.

People always say that Nathan is so lucky to have parents like us. Ken and I think it is quite the opposite, we are so lucky to have Nathan. He is a great little boy so full of life. We are so blessed that he came into our lives. Nathan means, “gift from God” which he truly is.

I planned this day in my head at Duke on one of those long clinic days. It included Jillian being healthy but still recovering from transplant maybe wearing a mask and the four of us doing something really special to celebrate the day. Things may not have turned out the way we wanted but I know whatever we do today, Jillian will be there because…even though he is annoying sometimes, she loves him and families stick together.

Monday, July 14, 2003 4:04 PM CDT

New photos added

We were not surprised there was a double rainbow over the funeral home Friday night. Jillian was always drawing rainbows for us. Someone told me that there was a very faint third rainbow. I bet that one was for Nathan. It would be like Jillian to share just a little bit with her little brother.
The service was beautiful. Our church family couldn’t have been more helpful and caring. I never thought I would be smiling at my daughter’s funeral but when we sang the songs she used to sing in the Cherub Choir, hand motions and all, I couldn’t help myself. She loved to sing and dance and spin in her dresses. I hope they like James Taylor and the Dixie Chicks in heaven and “rockin’ girl singers” as she used to say.

The remembrances spoken by Kim and Margaret had us laughing to ourselves and crying too. We can’t thank them enough. We love hearing other people’s take on Jillian’s personality, as it was unique. The pink balloon release was bittersweet. Jillian loved the balloon release they had at the Rainbow of Heroes Walk so we had one just for her. The Somewhere over the Rainbow/What a Wonderful World medley was perfect too. Jillian liked that medley and has always loved the Wizard of Oz. When we listened to the lyrics, it was if she was talking to us. “Somewhere over the rainbow, where blue birds fly, high above the chimney tops that’s where you will find me, I’ll watch the flowers bloom for you and me, …”.

We are overwhelmed with the volume of messages on Jillian’s caring bridge guestbook. And we know it was all your prayers that carried us through this past week. We read each and every entry, and continue to be encouraged by your words. Thanks to everyone who sent flowers and cards, made donations in Jillian’s name, wrote wonderful things about Jillian on their own web pages, and to those who had their own pink balloon releases. A lot of people traveled far to be here with us, some quite unexpectedly, to say good-bye to Jillian. We appreciate your sacrifices, and your love and support.

We no longer need to pray for Jillian. She is in a better place now. But please continue to pray for our transplant families especially:

The Nicolls http://caringbridge.org/co/nicollbrothers/ as Douglas passed away
Madison and her family http://www.caringbridge.org/nc/princessmadison/ as she relapsed, pray for GvL
Taylor and her family http://caringbridge.org/va/taylor/ as she relapsed after her 2nd transplant

Tuesday, July 8, 2003 9:18 AM CDT

(SEE ARRANGEMENTS BELOW)

Jillian is free.

Our little angel got her wings this morning just after 1 AM. Heaven must have needed a chatty, feisty, precocious, pink-dress-wearing angel. They have their hands full.

It became apparent last evening that she wasn’t going to make it through the night. Other than her breathing becoming labored the last few hours, she probably suffered very little or not at all. But she had her parents right there with her the whole time, assuring her that it was okay to go. We held her and told her a lot of things; mostly of how much we loved her and how proud we were of her. We told her we were coming right behind her and we would all be together someday. She was the “line leader”, a term used at her school, which she always had to be at home. If we were all walking somewhere she would declare, “I’m the line leader” and we would all have to walk behind her. She is now our little line leader to heaven.

Please don’t be sad for her. Her healing is now complete. She is safe and pain-free. Jillian was never sickly. She breezed through chemo, barely losing a hair on her head. She did great through transplant gaining her energy back quickly. It was only in the past week that she had gotten so sick. She was such a tough little girl under all those frilly dresses. It was heartbreaking watching her struggle so much these past two days but she managed to crack a smile here and there and get out of her room. Last night she was struggling and it was hard to watch. We prayed for God to take her and our prayers were answered. Heaven got a very special angel.

VISITATION: Friday, July 11, 6 PM – 8PM
Fuller Funeral Home
1625 Pine Ridge Road
(between Goodlette & Airport Rd.)
Naples

CELEBRATION OF JILLIAN’S LIFE:
Saturday, July 12, 11AM
North Naples United Methodist Church (in the Chapel)
6000 Goodlette Road
(½-mile north of Pine Ridge Rd.)
Naples

Interment at Naples Memorial Gardens, Vanderbilt Drive at 111th Avenue North,
followed by a luncheon reception back at the church community center with a pink balloon release.

Monday, July 7, 2003 8:02 PM CDT

Thank you for all your prayers. The sheer numbers of different people who are pleading to God for our little girl amazes and humbles us. Please also pray for Jillian's friend from Duke, Jacob, as we have just found out that he is now fighting pneumonia... http://www.caringbridge.org/va/jacob
Jillian has another condition to contend with; she has developed VOD (venoclusive disease), a narrowing of the veins in and leading to her liver, causing the blood flow to the liver to be blocked. She has become somewhat bloated as a result, because she is retaining water.
This morning when we woke up she was moaning repeatedly and wouldn't respond to us. She was also very pale. They gave her some extra pain medication as well as blood and platetlets. They took her off her remaining antibiotics so they don't have to interrupt her continuous morphine drip at all. (They had already stopped several meds as of yesterday, including the Decadron steroid. They have also decided not to put in the extra PIC line, because of her inability to hold platelets.) It was scary for a while, but then she regained her color, and the pain seemed to subside. She went back to just talking in her sleep, something she does much of the time. She spent most of last night carrying on one-sided conversations. The morphine apparently causes her to have some vivid dreams, even when she's half-asleep. Right now as I (Ken) write this, she seems to be re-living some memory, because several different people's names have come up, and she sang a Christmas carol and the Elmo song, among other things.
When she is not sleeping, she has very little patience for anyone besides her mother, including yours truly. I was given a time out for apparently hovering too close. Even nurses she normally loves have been scolded and the doctors that she usually hugs have been banished from the room. Hopefully this will subside as the Decadron in her system wears off.
Nonna and Papa came by this afternoon, and we weren't sure how receptive she would be. But she warmed up right away (well, not so much to Papa, who soon took my place as the whipping-boy) and wanted to go for a ride in the wagon with them. They took her around all 4 floors of the atrium and up and down the glass elevators. She did the same with Laura and I last night for a couple of hours. We also sat together and watched a Disney movie in the family waiting room. So she still has some energy to get out from time to time, and that cheers us up.
We're glad that she's still with us, and we hope and pray that she will be for as long as possible, as long as she's not suffering.

Saturday, July 5, 2003 10:54 PM CDT

Dr. MacArthur sat down with us this evening to lay out the hard facts about Jillian’s situation, and they’re difficult to express, but here goes…(this is Ken, by the way)…
This latest attempt to get her into remission has wiped out her cells, and she is not making new ones. It’s kind of a vicious cycle, if you will: Her body needs white blood cells to overcome the pneumonia and the other bacterial infection she’s developed. A second cord blood transplant would give her the stem cells to make those white blood cells, but she can’t get a transplant while these infections are in her system (because they would wipe out the transplant).
Barring a miracle, she’s not going to win this battle. The miracle would be that her body would start producing new cells, and they don’t expect that to happen.
As of last night, they put her on a morphine drip to keep it constantly flowing into her system, because the pain in her left side and neck would flare up every time the individual morphine doses they were giving her wore off. Because the morphine is incompatible with some of her other meds, they have to stop the drip for sometimes an hour or more at a time while the other meds are going in. Dr. MacArthur doesn’t want her in pain, so they’re going to put in the PIC line as planned to enable her to get both meds at once. They are not, however, going to take out her port as initially planned, because she might not recover from the surgery. The PIC line installation is a less risky procedure, but they do have to anesthetize her. So at the same time they will do a bone marrow aspiration to see if they find leukemia cells.
If they do find leukemia in her marrow (and maybe even if they don’t) they may stop giving her the chemo, especially the Decadron. This is the nastiest of the steroids, and it’s made her more and more miserable. She has mostly just slept off and on for the past couple of days …partly because all the antibiotics and the increased morphine wipe her out, and partly because she’s often depressed and angry when she’s awake. She had several visitors yesterday and today, and that perked her up for a couple of hours at a time, but she was not always nice to them. We hate what the Decadron does to her, so if it’s not helping, we want to stop it. The doctors are inclined to agree.
Depending on what happens, she may come home and have Hospice care. They’ll continue to give her whatever medications are helping at any given time.
If the Lord sees fit to allow something to happen that the medical experts say is unlikely, than of course we’ll pray for that miracle. If He decides to take Jillian home, please pray that He gives us the strength and the peace to accept that no one could possibly be more concerned about what’s best for her than Him, her creator.

(P.S.: Thank you to the Ganichs, the Sweats, Judy & Curt, the Herreras, Lori & Amanda, the Pricketts and the Bordeaus for all the wonderful gifts you’ve dropped off or brought to Jillian. It’s not necessary, but she and we sincerely appreciate your thoughtfulness.)

Wednesday, July 2, 2003 10:57 PM CDT

QUICK UPDATE –THU., 7/3, 9 PM: (from Ken)
Jillian did not have her port removed today as planned. Her pulse-ox number (level of oxygen in her blood) dipped a bit low while she was sleeping early this morning so they started giving her oxygen through (I’m not sure what they’re called) one of those tubes that attaches right below her nostrils. (I thought she would give them a hard time about it but she was OK with it.) Because of that, they did a chest x-ray this morning, and it showed the pneumonia in her left lung is not diminishing and possibly getting worse. So Dr. Salman was uncomfortable with putting her on a respirator, which would be necessary to do the surgery. He tentatively plans on taking her port out Monday, provided she improves enough to make it less risky. Of course that meant they didn’t do the bone marrow aspiration today, they’ll try to do that also on Monday.
This afternoon had a bright spot; Nonna & Papa came to visit, and it really perked Jillian up. She became talkative and more energetic, and even took a walk around the halls and the atrium (wearing her mask, of course). It was heartening to see her so cheerful.

(The rest of this is last night’s update from Laura…)

When I was staying up on 5200 with Jillian, there was a sticker stuck to the windowsill in our room that read, “God is in Control”. I saw it every night before I pulled my cot out of the wall and went to bed. I always felt like I had control of Jillian’s situation but I don’t have control, I never had control, and maybe I have finally accepted that.

Tomorrow Jillian is having her port taken out and two IVs put in her hands and a PIC line put in her arm. We believe the source of her infections could be her port so we need to remove it. The child life specialist and I explained this to Jillian today and she was (for lack of a better expression) pretty pissed off. She threw everyone out of the room except for me. I have to admit, I like the fact that she got angry. It was the most spunk and emotion I have seen in her in a couple of days. Anyone who knows Jillian knows she is spunky. You see…the chatty precocious girl I drove down from North Carolina with has gotten pretty sick. The novelty of being in her own hospital has worn off. She is depressed and miserable and is asking for morphine to help her feel better. It breaks my heart to see her like this but I certainly can’t blame her.

I have had two meetings with Dr. Salman since we have been home and I asked him to sit down with both Ken and I this evening to reiterate everything we have talked about. I seem to forget things when translating information between Dr. Salman and Ken. I am glad that we did. Ken and I need to be on the same page when making decisions about Jillian’s care.

The pneumonia is worrisome but what is really concerning the doctors is the fact that she keeps getting positive blood cultures while on all of these antibiotics. Today the CT scan also showed sinusitis, which isn’t so bad, but again, she got it while on so many antibiotics. In order for Jillian to have a second transplant, she needs to be infection free and better yet, in remission. The doctors are not very hopeful that she can be infection free.

Tomorrow we are also doing a bone marrow aspiration while Jillian is under anesthesia for the line placement. If we see leukemia, Ken and I need to make the decision whether or not we want to continue chemotherapy. Dr. Salman thinks we will see nothing. He believes we have wiped out her bone marrow. He talked to Dr. Kurtzberg at Duke and she will transplant without the bone marrow recovering as long as Jillian is infection free. Of course the odds of a second transplant working are pretty slim. Dr. Salman wants Ken and I to start thinking about hospice whether we make it to a second transplant or not. He wants Jillian to go home and so do we. Hospice can help. She is on too many meds for me to administer at home.

I never thought we would be at this point or perhaps I just pushed it way in the back of my mind. I guess it was that thing called “hope” we were clinging to. But here we are and Ken and I have some tough decisions to make. The first thing Ken and I have decided is that we can’t be selfish. We won’t let Jillian suffer because we are afraid to let go. We won’t let the treatment become worse than the disease. I guess being a good parent is knowing when to let go. It is not something you learn in parenting books or classes. The best that we can do is use our minds and go with our hearts. After all, it is God that is in control and all we can do is ask for is his guidance.

Tuesday, July 1, 2003 10:10 PM CDT

Not much change since Saturday. The pneumonia or pseudomonas in Jillian’s left lung is still there, but hasn’t gotten worse and does not concern her doctors. She tested positive for another bacteria (bacterium?) and they are giving her additional antibiotics to counteract it, although they don’t yet know what it is. There is some concern with that because it showed up even though she was already getting other antibiotics. She still has periodic pain in her side, which may or may not be related to these infections.
Jillian’s temperature has been normal or just a tad high the last couple of days, but she hasn’t officially had a fever since the weekend, so that’s good. It means that even with her immune system so weak, so far she’s holding her own.
She does need to stay in the hospital for now, though, partly because she’s getting so many meds all through the day & night that it would be difficult for us to do them at home.
She could easily be in much worse condition, and we’re thankful that she’s not, but please continue praying that she can turn the corner soon and spend some time at home before we move to the next phase.
Speaking of prayers, we want to sincerely thank everyone at North Naples United Methodist Church who was involved in making and distributing the special prayer cards for Jillian at this past Sunday’s services. They were pink and purple construction paper with a child’s handprint with a heart in the center, and a prayer for healing for Jillian and for cancer patients in general. And thank you especially to Pastor Ted for telling the congregation about her situation and his visit with her, and for saying the prayer for her. It was very touching and encouraging. I wish Laura could have been there. (This is Ken.)
We are blessed to have so much support.

Saturday, June 28, 2003 10:36 PM CDT

Jillian is still in the hospital as of this evening. (Laura is staying with her; this is Ken updating.) Yesterday they told us that since her fever was gone and she was feeling well she could probably come home after she got her meds Saturday morning.
She had a bit of a rough night because of a nosebleed that started around 11 PM. The nurses had difficulty getting it to stop because Jillian’s platelets were low, so the blood was not clotting easily. Around 3 AM new platelets arrived via courier, which ultimately solved the problem. But she was quite uncomfortable much of the night and did not sleep well. As a special treat, Dr. Salman made pancakes this morning for the kids and nurses and parents, and Jillian had been looking forward to helping him cook. But she just wasn’t herself when she got up, and after breakfast she went back to sleep in her room. When she woke up around noon she seemed OK but felt warm. Her temperature was back up to 101.5. Dr. Salman said she could go home for the afternoon, but had to come back this evening. She had been looking forward to leaving for good, so she was quite upset at this new development.
Well, our return home turned out to be even more temporary. We were back less than an hour when she started complaining of pain in her left side again (like when they first found the pneumonia on Tuesday). Before long she was in a lot of pain, so she & I headed right back up to the hospital. Laura packed another bag and came up with Nathan about a half hour later.
They gave her morphine, which helped immediately, then sent us to get another chest x-ray. It showed that her lung infection is still there, but doesn’t appear to be any worse. Her fever subsided a bit by later this afternoon. So we don’t know anything definitive about the cause of her problems today. They want to do another x-ray tomorrow, so maybe we’ll know more then. She’s still basically OK, but of course very neutropenic (very low white blood cell count) and prone to unpredictable ailments.
Jillian had a great night before all this happened, because she finally got to see her best friend Marissa. She and her Mom came and they spent the whole evening together.

Thursday, June 26, 2003 11:03 PM CDT

This is Ken updating…

Well, the extra prayers are working, because things look much better for Jillian today than they did 2 days ago. She hasn’t had a fever for more than 24 hours, her cough has diminished, and they’ve determined that the bacterial infection in her lower left lung is (if I understand
correctly) pneumonia caused by the pseudonomas bacteria, which they began treating immediately with a specific type of antibiotic. She had been experiencing pain in her left hip and abdomen, but that has subsided. She has to take this medication I.V. 3 times a day for 2 weeks, but Laura can administer it through Jillian’s port when she leaves the hospital. They’ll do another chest X-ray tomorrow to see if the infection is shrinking, so we don’t know yet when they might discharge her.
In the meantime, she is feeling OK and is in good spirits (except for the steroid-induced emotional swings), and has been getting her fair share of visitors; catching up with people she hasn’t seen for 7 months. Thanks to Pastor Ted from our church for stopping by.
We are so thankful for this turnaround, although we know she remains susceptible to these complications because her immune system is still so compromised. As usual, we are most grateful for all your prayers and support.

Tuesday, June 24, 2003 10:05 PM CDT

--WEDNESDAY EVENING 6/25-- INTERMEDIATE UPDATE: It appears that Jillian's pneumonia is bacterial rather than viral. Bacterial is better because they can treat it with antibiotics. Also her fever appears to be the result of an e-coli-type infection which can also be treated with antibiotics. That's about all we know right now; hopefully more tomorrow.
(The rest of this is Tuesday's update...)
Just a quick update…Jillian woke up with a fever this morning and was admitted to the hospital here in Florida. Her chest x-ray was not clear this time and she is believed to have pneumonia. We don’t know what kind yet. She will has a CT scan in the morning to further investigate. We have wiped out what little immune system she has with chemo, so it will be hard for her body to fight it. Hopefully the antibiotics will help her fight it. She just can’t seem to catch a break these days. We will update when we know more. Keep praying.

Friday, June 20, 2003 11:51 PM CDT

Ken updating again; just a quick one...
A few developments since the last update, the most important of which is --Jillian is headed home tomorrow! We should all be home by some time Sunday afternoon.
They decided to start her chemo & steroid (vincristine & Decadron) treatment today (Friday), then send her home so she could be at her Ft. Myers clinic on Monday to continue it. This is sooner than we or they had expected, but they pulled together a lot of paperwork in a hurry so we could get going. As her homecoming may be temporary, the sooner the better. The prognosis is still uncertain as mentioned in the last update, but we're grateful for this development.
We've had a nice visit with Grandma & Grandpa, but it's been hectic. They've been able to keep Nathan occupied.
We (probably Laura) will have more to tell once we're back.

Tuesday, June 17, 2003 11:16 PM CDT

This is Ken updating. Nathan & I arrived back last Saturday evening, and we all had a nice Father's Day together.

Some more disappointing news today... the blasts have reappeared in Jillian's labs. As was the case when she got Campath the first time, it wiped out the blasts (leukemic cells in her blood) at first, as a result of diminishing her white blood cells, but as the Campath is wearing off, those bad cells are coming back along with the good ones. Today's results showed 33% blasts. It has only been 11 days since she got her boost of cord blood, and Dr. Kurtzberg wants to give that another 2 to 4 weeks to see if it engrafts, at which point they would do another FISH test to determine the percentage of donor cellls.

In the meantime, today they started another round of Campath to temporarily knock the blasts back down. Then they plan to try to put her back into remission with a course of chemo & steroids (vincristine and Decadron). The good news is she can get that treatment from Dr. Salman back in Ft. Myers, so Jillian & Laura are probably coming home in as soon as a week to ten days --if only temporarily. The length of time depends on what happens. There is a chance the chemo will put her into remission and her boost will engraft with 100% donor cells. If that doesn't happen, or if her blasts reappear at any time, she will have to come back up here for a second cord blood transplant. If we do get to that point, however, Dr. Kurtzberg has assured us that Jillian is strong, and feels she would most likely get through it just fine, because she did so well the first time.

We went to the clinic after dropping Grammie off at the airport, because Jillian wanted to be there to say goodbye. She was OK with it (although Nathan became upset when he realized we drove away without Grammie) because we're here and also because her Grandma & Grandpa (my folks) are driving in tomorrow.

Special thanks to Karen Mika from Berea, OH for the Barbie dolls! That was very nice of you.

We remain grateful and thankful for all your prayers. Please don't stop.

Wednesday, June 11, 2003 10:12 PM CDT

Last week was a rough week for Jillian as she was very homesick. Not just weepy but she had those kind of cries where you can’t catch your breath. She just kept saying, ”I want to go home. I want to be a real family again. The apartment is not home”. Talk about breaking your heart.

This week has been a different story since Grammie has arrived. Jillian has been feeling well and has been her regular chatty-precocious-frilly-dress-wearing self. We went to her favorite restaurant Maggiano’s the day Grammie arrived. Jillian was in such a good mood; she danced for a half an hour to the music outside the restaurant doubling the petechia on her little shins. Ken and Nathan are due to arrive this weekend for Father’s day and Ken’s parents are coming from Ohio to visit us next week. Jillian should be pretty busy and very happy these next two weeks. I hope she continues to feel well. We know GVH could arrive at any time.

Jillian’s counts are dropping fast. She has needed both blood and platelets this week and probably will again by the end of the week. She also needed potassium yesterday, which was surprising since she has been eating well. If she would just eat the potatoes in the clam chowder she wouldn’t need potassium. Dr. K gave her the okay on some other foods she has been craving but to introduce them little by little. We tried a little cottage cheese and a crouton and lettuce salad today. We are going to try ice cream later this week. Jillian’s steroids were weaned down below maintenance level so I am expecting her appetite to go away completely. Dr. K does not want to suppress her immune system so we are cutting back the steroids too.

Jillian’s second CMV test came back positive but the quantitative measure had gone down. Basically, the Campath has knocked Jillian’s system down so the CMV showed up in her DNA again. Even though she is not sick and does not have the active virus, we are on contact isolation until it is negative.

Right know we are waiting (and praying) for Jillian’s boost of stem cells to engraft. Thank you to everyone for keeping us in your prayers.

And …Congratulations to the WAVV-FM coed softball team for your 2nd place trophy. Of course if Ken and I played this season, it would have been a 1st place trophy but 2nd place isn’t too bad.

Friday, June 6, 2003 4:31 PM CDT

Jillian’s cord blood boost went off without any problems. When we arrived at the clinic this morning, Jillian was wound up. She was talking a mile a minute to everyone in the waiting room. When we went back to our room in the Rainbow Day Hospital, her mood quickly changed. She was mad she had to be hooked up to the monitor with the electrode stickers all over her chest. She has always hated those things. As she got her boost, the faint but familiar smell of creamed corn (from the preservative in the cord blood) filled the air. It took about 10 minutes for the transfusion. She was monitored for about and hour and a half and then we were free to go.

After the boost, Jillian wanted to go up and visit her favorite primary nurse Andria and also see baby Jordan who was moved from PICU to 5200. Jordan looks great and is doing awesome. We should see him back in clinic soon. We then had to swing by the apartment, grab a cupcake for Jillian to eat in the car while I quickly ran into the store to buy 4 more cans of…you guessed it…clam chowder.

I think the day has caught up with her because she is napping right now. Between the smell of the clam chowder cooking and creamed corn coming out of Jillian’s pores, the apartment reeks of a New England clambake. I hope when Jillian wakes up, she will want to go to the park. The weather has been pretty nice all week but we have been at the clinic. Tomorrow we have the day off but it is supposed to rain.

So what do we do now? We wait, we hope, and we pray.

Grow cells grow!

Thank you to Lucille for the card games you sent to Jillian this week. Thanks to everyone for all of the words of encouragement on our guestbook. We would never be able to get through this without the love and support of our family and friends!

Thursday, June 5, 2003 6:48 PM CDT

Another successful Campath treatment…Jillian did well again today. Unfortunately, the steroid boosts have her emotions running all over the place. We had a few problems accessing her port today, which made her very upset. Jillian’s counts are really dropping from the Campath this time. She may need a blood transfusion this weekend.

Her CMV test also came back positive this week. We are still waiting on the quantitative results. The CMV test is very sensitive. A couple months back Jillian had a positive CMV test but it was barely positive based on the quantitative results. She did not have the live virus and it was negative the following week. We are hoping it is the same this time so they drew blood for another test today. We don’t want any viruses or infections when she gets her boost tomorrow.

So we will be up bright and early for the clinic tomorrow. I told Jillian there would be no time for her usual clam chowder breakfast.

Wednesday, June 4, 2003 6:30 PM CDT

Today was much better than yesterday. Jillian just amazes me. She told me this morning that she didn’t mind getting sick if the medicine gets rid of bad cells. Well, she didn’t have to worry about getting sick today. The nurses mixed up a nice cocktail of steroids, Tylenol, Benadryl, and Zofran for her before the Campath and she did fine. She was mostly complaining about how hungry she was and how she wanted clam chowder as soon as we got home.

We had a visitor at the clinic today, Dr. Mogul, who used to be one of Jillian’s doctors in Florida. I was surprised that Jillian didn’t remember him because it seems like it was just yesterday she was asking about him. He knew we were there and stopped by to say hello, which was really nice of him. After he left Jillian told me that when you get older, you can’t remember everything from when you were a kid. So I guess now that she is almost six, I can’t expect her to remember things from when she was four and just a kid.

Our plans have changed a little. Since Jillian did well with her Campath today, Dr. K wants Jillian to get her last dose of Campath tomorrow and her cord blood boost on Friday.

Thank you to everyone signing our guestbook and for your prayers and support.

Tuesday, June 3, 2003 10:37 PM CDT

It was a long and busy day at the clinic today. We were there for 11 hours. Jillian received IVIG, platelets, and a dose of Campath. She was in great spirits when we arrived, but once she started getting the Campath, she started getting pretty sick. Her whole body ached, she had chills, vomiting, and spiked a fever of 104.3. This was part of the reason we were there for so long. Dr. K wanted to make sure she was feeling well and her temperature was coming down before sending us home.

Jillian is feeling much better now. She will be getting another dose of Campath tomorrow and one on Friday. These shouldn’t make her as sick as today. If they do, Dr. K said we would stop it and use something else. Jillian will get her cord blood boost on Friday after the last dose of Campath. Sorry so short, but I am exhausted.

Sunday, June 1, 2003 5:05 PM CDT

Well the other shoe has dropped. I have been a little suspicious of things this week. The petechia (little bruises) on Jillian’s shins had increased. Even though Jillian’s hemoglobin and platelets had come down only slightly last Tuesday, I know Jillian, and this signaled something to me. She started making platelets and red blood cells very early after transplant. So when they drop even slightly, it means something. It also seems that when the variant lymphs start to show up on her labs, the blasts are soon to follow. Well the blasts showed up today. I am not surprised though. This would have been the week for the blasts to appear.

Boy it would be nice to update with some good news for a change. The FISH test came back 84% donor cells and 26% Jillian’s cells. That is 110% so I will have to ask about that tomorrow. Dr. Martin came and spoke with me today. Jillian will probably need platelets tomorrow. He emailed Dr. Kurtzberg and thinks she will want to do the cord blood boost right away. He said that they still have some tricks up their sleeves and the boost could initiate GvL and bring her donor cells back to 100%. It was nice to hear him say that but I am having a hard time being positive and thankful these days…but I am trying.

It is hard to believe there is leukemia lurking around Jillian’s little body because she has so much energy and she looks great. I wish I could trade places with her. Jillian deserves so much more than this. I will update when I know more.

Special prayer requests for our friends:
Jordan……http://caringbridge.org/il/jordan/
Sarah………http://caringbridge.org/nc/sarahsmith/

Wednesday, May 28, 2003 10:12 AM CDT

Day 155

It must be some kind of a record because Jillian has managed to eat 12 cans of clam chowder this past week. I can barely look at it when I cook it especially in the morning. She has also eaten 15 cans of sautéed canned mushrooms, 3 bags of shredded cheese, and two bags of marshmallows. This is all she wants to eat and she has gained two pounds. It is amazing what a little steroid increase can do for the appetite.

Ken came back up for the holiday weekend while Grammie entertained Nathan in Florida. Ken is leaving today and we hope Jillian is not too sad because it will be a couple of weeks before he can come back up. We had a good time though as the weather finally cleared up. We went to 2 Durham Bull baseball games and sat away from everyone. The Bulls beat the Scranton/Wilkes Barre (where my parents are from) Red Barons. It was a lot of fun.

Jillian continues to feel well. Her counts are hanging in there. I was hoping her platelets would continue to go back up but Dr. K is happy that they are stable. They drew blood for another FISH test yesterday. This is the test they do to check for donor cells. Please pray and send positive vibes our way that it is back up to 100 percent donor cells. We should know by next Tuesday. Jillian is going to finish up her antibiotics tomorrow for the two bacterial infections she had two weeks ago. On Sunday she will have cultures drawn. The plan is to give Jillian a boost of cord blood to even further create GvL. They always save a little cord blood in case a boost is needed. We need to make sure she is bacterial and virus free because any kind of infection can destroy the stem cells in the cord blood which would be a big waste. We only have one shot at this. She then has to be monitored closely for GvH because her immune system is not being suppressed.

Jillian is also coming up on her 6 month studies in late June. We talked about doing her 6 month studies two weeks early so we could possibly go home once any GvH issues were under control after the boost. I couldn’t believe we were even talking about going home with everything that was going on. There are so many “IF”s in the equation that I couldn’t tell you when that could be. Jillian insists that she will be home by the 4th of July. I hope she is right. Maybe she knows something that I don’t.

I am thankful that Jillian is feeling well and wanting to get out and do things. These days are very nerve wracking though. I feel as if I am waiting for the other shoe to drop. Waiting for blasts to show up, waiting for GvH of the gut to flare up, waiting for the FISH test. However, I am in good company with other families waiting for test results, waiting to go home, waiting, waiting, waiting.

So please keep Jillian and our transplant friends and families in your thoughts and prayers because we are all waiting and we are all wanting the same things for our children - their good health, which is something I will never take for granted.

Tuesday, May 20, 2003 10:59 PM CDT

New Photos

I am not sure where to begin. Jillian is doing and feeling fine except for being upset that Ken and Nathan are leaving tomorrow. Today I spent the day with Nathan and then we went over to the clinic to meet up with Ken and Jillian. I ran Nathan ragged at the park and at the mall so he would nap while we spoke with Dr. Kurtzberg. Our timing was perfect as he snoozed through our meeting.

We don’t have any answers but we really were not expecting any yet. We are still watching and waiting and praying. Dr. K is pleased with how Jillian is doing though. Her labs look good - white blood cells, hemoglobin, and even her platelets are hanging in there. She has had no blasts in her blood for over a week. Is that because of GvL (graft vs. leukemia) or the Campath or both? It is hard to tell at this point. Campath has a ½ life of 3 weeks so we will know more in a couple of weeks. The way I understand it is that we are looking at 3 scenarios here. The first is that the Campath eliminated the blasts and they will return once the med starts to leave her body. The second is that GvL eliminated the blasts and the donor cells are doing what they should be doing. The third is that the Campath helped Jillian get over the bump and GvL will take care of the rest. I’ll take what is behind door number 2 or number 3 please!

We also have to watch for GvH (graft vs. host) since we are not suppressing her immune system. We are assuming Jillian had GvH last week. The only way to know for sure is to do a biopsy, which we don’t want to put her through and really isn‘t necessary. Dr. K believes the high fevers last week were from the two bacterial infections found in her blood and urine. These appear to be gone now but Jillian has to stay on an antibiotic for a couple more weeks. However, she believes the severe diarrhea and vomiting were from GvH. So we need to be prepared to treat that should it happen again.

Jillian gained more than 1/2 a pound this week thanks to the slight increase in steroids. This is good because we really don’t want her to lose any more weight. Every morning we make a turkey, mushroom, and cheese omelet together. She eats only the turkey and the mushrooms leaving the mangled eggs and cheese for Ken. She is currently on a clam chowder binge. She doesn’t eat the clams or the potatoes just the chowder part (or as we folks from Maine say “chowda pat“) As long as she is eating something, we don ‘t care. We are weaning her steroids back down again. When she is on her maintenance dose, she wants to eat but can’t decide what to eat. Nothing really appeals to her, which I guess is very common post transplant.

It has been really nice for all of us to be together these past 2 weeks. Four of us in a one bedroom apartment can be challenging at times but also fun. We had a nice visit with Uncle Butch and Aunt Carol Ann although we spent most of our time together trying to get Nathan out of the bedroom because he locked himself in by turning the deadbolt knob.

Thank you to the Maine Alperts for the beautiful bouquet of flowers. Thank you to Marissa and family for the candles and the framed picture. Jillian immediately put the picture and frame that Marissa decorated up on the table and out of Nathan’s reach. Thank you to everyone who has signed our guestbook. I am a bit behind on answering email, but I really enjoy hearing from you.

Wednesday, May 14, 2003 6:12 PM CDT

We are back to our apartment today and Jillian is feeling much better. She is still very tired which is to be expected after everything she went through. She had GvH of the gut and a bacterial infection, which was probably caused by the GvH. This episode made C-Diff look like a picnic. I felt so bad for her. I have never seen her that sick before. I knew we were in trouble when the nurse asked me what was in the bed pan (there is no bathroom in the BOP room) because it looked like tomato soup. The good thing is that the blasts in her blood dropped by more than half while her WBC went up. We can’t read too much into this (i.e. GvL) but as the doctor said, it is always good to see the blast percentage and absolute blast count go down.

Jillian was moved to 5200 last night to receive Campath. The Campath was administered to treat both the Leukemia and the GvH. Campath kills off all white blood cells and can have some nasty side effects. So after we got Jillian feeling well again she received Campath and ended up with chills, stomachache, and a bad headache, which was treated with Fentenyl. The Fentenyl definitely helped and she was asking for more later. It breaks my heart. Five year olds should be asking for toys not narcotics.

By this morning Jillian had no blasts and her WBC was hanging in there. We should expect to see her WBC go down and she could be neutropenic for a month. The plan is to wait and see what grows back. We want good donor cells and GvL. Her steroids were increased a little and she is not on any immune suppression drugs. So we watch, we wait, and we pray.

I have no idea when we are coming home but that is okay. I will do whatever it takes and I will be thankful for being here with Jillian. I am glad Ken and Nathan are here right now. Jillian is happy as long as her Daddy is here so that makes things a lot easier. I have been having a lot of fun with Nathan. He is such a happy, friendly, and energetic little boy. His visits to the hospital were brief, as an already small hospital room gets a lot smaller when he is in it. Today he swallowed one of Ken’s contact lenses. Ken didn’t have his lens case at the hospital so he put his contacts in two small dose cups with water - one of which Nathan drank. I told Ken he could probably get it back in a day or two but he passed.

Thank you to everyone who has signed our guestbook. We really appreciate it. Special prayer request for Jillian’s favorite baby, Jordan, who was also admitted to the hospital this weekend. http://caringbridge.org/il/jordan/

Well gotta’ go. Nathan just came out all wet to tell me that he pooped in the bathtub. Ken is cleaning it up. Maybe he will find his contact lens.

Monday, May 12, 2003 10:43 PM CDT

This is Ken updating...
Laura is spending the night with Jillian at Duke Children's Hospital. She was admitted early this morning after a mostly sleepless night of vomiting & diarrhea last night. Jillian awoke about 1 AM and said her tummy hurt, and it was downhill from there. She ended up in the BOP room at 5200, then, because she also developed a mid-grade fever, in a room on 5100 (the regular pediatrics wing), being cared for by the nurses there but being seen by her marrow-transplant doctors and nurse-practitioners.
Dr. Kurtzberg & Dr. Driscoll came over and saw her this morning. They're testing to see if this is an infection, maybe C-DIFF again, or a sign of graft-vs.-host (GvH). If they rule out the other causes and GvH is suspected, they may (if I understand correctly from what her NP Jen described to me) put her on a milder anti-rejection drug (not Cyclosporin) to counteract the GvH but still allow her immune system to fight the relapsed leukemia.
Speaking of that; another aspect of her relapse that was clarified for us somewhat... it's too soon to draw any conclusions from her labs as to whether the problem (the relapse) is showing signs of taking care of itself. Jillian's various counts have been jumping around a bit, and we had been particularly concerned with the "percentage of blasts" number being higher than it had been. Again if I understand correctly, that figure is tied directly to other numbers such as her white blood cell count. They must take into consideration a number of other factors over a period of time. Dr. Driscoll re-iterated on his return visit this afternoon that it can take up to several weeks. So we still have a lot more questions than answers.
The vomiting stopped by early this morning and Jillian slept virtually all day, waking up only to use the bathroom and take sips of water. They were pumping her full of fluids as well as her meds, and by late this afternoon her fever had come way down and the diarrhea had subsided. It made me sad to see her back in a hospital bed and sick again, when she has been so much herself lately. But by the time Nathan & I were leaving tonight, she was sitting up and starting to boss her little brother around, so maybe she'll be out as soon as tomorrow. If not, I'll stay with her so Laura can sleep in a regular bed.
Up until last night, it was a successful Mother's Day weekend. We are thankful we could all be together. Thanks for all your prayers and support.

Wednesday, May 7, 2003 3:00 PM CDT

New Photos

Sorry for not updating sooner but I really do not have any news. We are just watching and waiting at this point. We had a great time at the Rainbow of Heroes Walk on Saturday. Jillian’s best buddy Kelly was there. She gave Jillian a panda bear, which hasn’t left her side since Saturday. Jillian headed straight for the bounce house when we got there. She was so happy to see other kids. She was saying hello to all of them in line. She got her face painted and made necklaces. She hit every booth and activity. Her two favorite nurses, Andria and Kitty, from 5200 were there. As you can imagine having her Dad, best buddy, and favorite nurses all in the same place really made her day.

Dr. Kurtzberg made a point to come over and talk to me at the walk. She told me about kids that relapsed after transplant with tumors that disappeared when they went to radiate them or were clusters of dead cancer cells. She pointed out one girl who was at the walk who relapsed in her sinuses. They took her off immune suppression drugs and let the donor cells do their work. She is now 3 years post transplant. You would never know she ever had a transplant or cancer. It does give you some hope.

Sunday afternoon Jillian spiked a fever of over 103. We took her to the clinic and she got some antibiotics. The fever was gone by the next day. Our Tuesday clinic visit was good. Dr. Kurtzberg cleared up a lot of information for us. For one thing, we need to be watching the absolute blast count. Jillian’s WBC (white blood cell) count has been jumping around. We need to look at the number of blasts in relation to the number of WBC. We also need to keep in mind that it depends upon who reads the slide. On Jillian’s first slide per Dr. K, there were perfectly good monocytes labeled as blasts.

Since Jillian has not shown any signs of GvH (graft vs. host), we have taken her off of Cyclosporin completely. Jillian is happy about that. It tastes terrible and she doesn’t want to be hairy anymore. What we want is little to no GvH. Dr. K says no GvH would be the best. What we want is GvL (graft vs. leukemia). A skin rash or a little diarrhea is fine. If Jillian shows signs of severe diarrhea or abnormal liver and/or kidney functions, we may have to put her back on cyclosporin. We don‘t want to do that at this point.

We also talked about our other options down the road but I don’t want to get into that right now. We are just taking it one day at a time. I guess the hardest part about all of this (other than the obvious), is Jillian’s disappointment. She was really looking forward to coming home. She had a list of people she wanted to see and the order in which she wanted to see them. She misses her Daddy terribly and cries a lot when he is not here. She has been a pretty good sport for the last 5 months but now she is getting fed up with it all. I can’t blame her. I know it wasn’t my fault but I broke my promise to her that she was going home. I let her down and that hurts.

So I am trying to keep Jillian busy until Ken returns this weekend with Nathan. I can’t wait, as I haven’t seen Nathan in 4 weeks. Even though Ken just left yesterday, he wants Nathan to be with me on Mother’s Day, which I totally forgot was this weekend. I married a great guy!

So today Jillian and I played miniature golf to help pass the time until our guys arrive. Maybe it is the humidity but I have been noticing how curly her black hair is getting. Ken says she has carpet head, which is a good analogy. It does look like she is sporting some black shag carpeting on that noggin‘ of hers. It is too cute. I must say that I am thankful that Jillian feels well and wants to get out and do things. She has more energy than me.

Thank you to everyone signing our guestbook. You have no idea how much we appreciate it.

Special prayers requests for
Jacob http://caringbridge.org/va/jacob/ and
Douglas http://caringbridge.org/co/nicollbrothers/

Friday, May 2, 2003 6:01 PM CDT

I definitely have a mother’s intuition. When Jillian relapsed, I had a bad feeling that day on our way to the clinic even though there was really no reason to believe anything was wrong. Well I have had a bad feeling all week about us coming home. I had this sinking feeling that something was going to happen to prevent us from going home. While Jillian was having her lines removed on Monday, I went upstairs to make sure her blood had been sent to the lab. I kept thinking, maybe we should wait and see her labs before removing her lines. I kept telling myself that I was being silly as her labs have been fine. Well my gut feeling was right, Jillian has relapsed.

On Monday her labs came back showing 15% blasts. Both Dr. Kurtzberg and Dr. Martin looked at the slide and agreed that the cells did not look like lymphocytic blasts. The cells were abnormal but they couldn’t be sure it was leukemia. Her blood was drawn again on Tuesday and the results came back showing 10% blasts. We were hoping they were abnormal t-cells, which can sometimes show up on the labs post transplant - an issue that resolves itself. Dr. Kurtzberg had the nurse draw blood for another FISH test to check the % of donor cells and an EBV virus test and rushed a blood sample over to her lab to get a preliminary reading of the characteristics of the abnormal cells. I will say people were really hustling for us. She asked someone at her lab to stay late and run the tests, which take about 3 hours. The results showed that the cells were b-cells but the proteins did not match the ones on Jillian’s original leukemia cells. She told me that it could be an EBV flare up. EBV will show abnormal b-cells in the blood. Dr. Kurtzberg said she couldn’t make any promises though. The next step was to wait for the DNA tests on the cells to see if they matched Jillian’s leukemia cells. That test takes about 3 days. The FISH and EBV take about ten days.

On Thursday her labs were drawn showing 7% blasts. We still had no results but Jillian’s cyclosporin levels have been running high so we held a dose and then cut the dose in half. Whether it is EBV or relapse, we need to ease off the immune suppression drugs and let Jillian’s new cells try to fight it. Dr. Kurtzberg called today to tell us that the tests came back showing the same DNA characteristics of Jillian’s leukemia cells. She must have bribed someone too because the FISH test came back (in 3 days which is amazing) showing 86% donor cells and 14% Jillian’s cells.

I have said before that the transplant process is a roller coaster. If you have ever been to Cedar Point in Ohio, you will know what I mean when I say that Ken and I just lost our stomachs going over the first hill of the Millennium. We are not giving up though. If Jillian does not show any signs of GVH (graft vs. host) by Tuesday, we will take her off cyclosporin completely. Creating some GVH by decreasing the cyclosporin can also create Graft vs. Leukemia. It is a delicate balancing act, as you do not want too much GVH. Dr. Kurtzberg is optimistic. In 60% of relapses after transplant, it works completely killing the leukemia. The fact that Jillian’s blasts have been decreasing on their own without decreasing her cyclosporin is a good sign. She also told me the fact that Jillian’s labs have been holding all week is also a good sign - her hemoglobin, red blood cells, and platelets have been steady.

If you are wondering how Jillian is feeling, the answer is great. She has never looked or felt better. She is beaming with joy having her Daddy here. She has more energy choosing to walk over riding in the stroller. Yesterday she walked all the way down to the stream in Duke Forest where we like to throw rocks in the water. She never ceases to amaze me. She is chatty and our conversations are always funny. I forget she is 5 not 25. We are so blessed to have such an amazing daughter. Everyday with Jillian is truly a gift from God.

So please pray, pray, pray, pray, pray, pray, pray, pray, pray, pray, pray, pray, pray, pray, pray, pray, pray that this works. We love roller coasters but we are ready to get off and come home. Please keep our transplant friends and families in your prayers especially Travis’s family as he passed away earlier this week http://caringbridge.org/hi/twilliams/.

And thank you again and in advance for all your prayers, support and encouragement.

Wednesday, April 23, 2003 10:06 AM CDT

Monday night while we were sleeping I kept hearing a very faint crackling noise. I thought the clock radio was on but when I went over to check it out, I discovered it was coming from Jillian. She has been coughing more the past two days. At our big Tuesday clinic day, Jillian’s NP Jen, heard crackling again in her lower lungs. Jillian did a nebulizer treatment and it was much better. Dr. Kurtzberg wants Jillian to do a nebulizer treatment 3 times a day so we need to go to the clinic pharmacy to pick one up today. The inhaler was helping but the nebulizer will get the albuterol down deep in her lower lungs where it needs to be. She told me it is very common post transplant for patients to have this problem. The bronchioles become constricted for some reason. The nebulizer will help keep them open.

We are still on schedule to come home next week. Jillian will have her lines removed on Monday. We have a pre-op appointment tomorrow at the clinic. Jillian is lucky in the fact that she was able to keep her portacath in during the transplant. Most kids have their lines removed and a portacath surgically placed. They are just going to pull her lines out - they actually just pull them out. She will be under anesthesia during the procedure because she is so young. She told Dr. Kurtzberg she absolutely does not want to be awake when they do it. Jillian’s steroids were lowered but not back to maintenance level yet. Dr. Kurtzberg wants to do it even more slowly this time. She is still at a very low dose but has quite an appetite.

Jillian is very excited to see her Daddy and for all of us to drive home together. She has a list of things she wants to do when we come home. She wants to visit peoples houses, go on a sailboat, take a carriage ride on 5th Avenue, and eat Anne’s artichoke dip with Triscuits to name a few. She is very excited to see everyone but told me she might be a little shy at first. Jillian can be shy for about 5 seconds.

So I am keeping my fingers crossed that everything goes well this week so we can come home. Even though Jillian knows we are going home, she still has a crying session every morning. She knows she should be happy and thankful, but she is having a really hard time being patient.

Please keep our transplant friends and families in your prayers. A special prayer request for Jillian’s Uncle Ken - for his quick and safe return from the Middle East and for Jillian‘s Papa - for a quick and speedy recovery from his surgery. God Bless!

Sunday, April 20, 2003 6:42 PM CDT

See New Photos

Happy Easter Everyone! Jillian and I had a very nice Easter. Since we couldn’t go to church, Jillian suggested that we have a picnic at Duke Gardens. We have been there almost every day this past week. I think Jillian is enjoying her first “real” spring. The weather was perfect for a picnic - sunny and not too cold or too warm. The heat seems to really bother kids post transplant. Jillian gets very flushed and tires quickly in the heat. We will just have to be creative in finding things to do during the long hot Florida Summer.

Jillian has not had a C-diff episode since Wednesday night. I am hoping she is over it. I just hate seeing her feel so lousy and this is one step closer to coming home. She has been quite upset about her appearance lately. It never bothered her before but she has been very emotional lately which is partly a result of increasing her steroid dose due to the C-diff. I also think she is a little nervous about coming home and people seeing her. I explained to her that the puffy cheeks and belly will go down as she is weaned off steroids. She has been through this before. As for the fuzzy forehead and unibrow, that can be fixed with a little cream from CVS. So that is what we did yesterday before dyeing the eggs and she couldn‘t have been happier. She is only 5 but sometimes I think she is a teenager, Yikes! I will say she has the longest, darkest, most beautiful eyelashes from the cyclosporin. It really makes her blue eyes stand out.

Thank you Auntie Kate, Uncle David, Ben & Meggie for the Easter bouquet. It really made my day, as I was a bit homesick today. Thank you to everyone signing our guestbook and sending Easter cards. We really do appreciate it.

Please keep our friend Sarah and her family in your prayers. She is our former next-door neighbor on 5200. The doctors are not sure what is going on but she may have relapsed. The Smiths are a really nice family and they have lived a very interesting life. You can read about it and leave a message at Sarah’s web site
http://caringbridge.org/nc/sarahsmith/

Wednesday, April 16, 2003 9:55 AM CDT

On Monday Jillian felt fine all day. We went to lunch with Nonna and Papa and roamed 9th street before they headed home. Around 6:00 pm Jillian told me to turn off the TV because she couldn’t look at food commercials so I knew what was coming next. To save us another trip to the Bop room, I quickly administered her evening meds a couple hours early and gave her some Benadryl. I prayed that it would all stay down for 30 minutes so we wouldn’t have to try again. It worked and that was the last I saw of Jillian until the morning. The NP told me that is exactly what I need to do. Benadryl is actually an anti-nausea medicine. Zofran won’t work because it targets the receptors in the brain affected by chemo.

Our Tuesday clinic visit went well. Jillian’s best buddy Kelly came by and colored with her. She is graduating soon and will be teaching math in Brazil for a year before starting med school. I think that is pretty neat. The rest of Jillian’s 100 day studies came back. Her immune system is working at about 30% which is pretty good for 100 days per Dr. Kurtzberg. She went over 3 numbers with us which I can’t quite explain but one was in normal range and the other two were not bad for 100 days. Jillian lost another pound this week even though she is eating very well. Dr. Kurtzberg said it was steroid weight. As she gains her muscles back ,it will even out. She is less than 40 lbs now which was a shock. She weighed that when she was four.

The good news is that we can go home in 2 weeks…under two conditions - we get the C-diff under control and there are no more bumps in the road. Once again, we are cautiously enthusiastic. We are scheduling Jillian’s surgery to have her lines removed next week. I can’t believe we have been here for 5 months. This came at a good time as Jillian has been very weepy for home lately. She saw a picture of Dr. Salman in the newspaper from home and started crying because she misses him. I never know what is going to set her off.

Thank you to Marissa and family for the Easter care package. Jillian loves her necklace because she loves dolphins and Marissa. She wears her Jillian/Marissa friends T-shirt here all of the time and gets many nice comments. I love the candle. Tell Gabe thanks for the Spiderman bubbles. Thank you to Leigh for the books, coffee, and pin. I have become quite the coffee junkie here in NC.

Per my usual request, please keep Jillian and all of her transplant buddies, transplant families, and transplant angels in your prayers.

Sunday, April 13, 2003 10:22 PM CDT

New Photos

We have been having a really nice visit with Nonna & Papa. However, we did end up in the BOP room again overnight. Friday night my Dad and I went to a movie while Jillian and Donna watched movies at their hotel room. After the movie we went by the hotel so I could give Jillian her evening meds. My father and I were going to go out to dinner. There was a change in plans because we found out that Jillian had been throwing up for the past half hour. I took her home hoping it would pass but around 11:30 pm I called the doctor up on the unit and told her once again she couldn‘t stop vomiting and had diarrhea. I took her in and they gave her IV fluids and all of her meds IV plus some Benadryl. It was nowhere near as bad as the previous episode but she couldn’t hold anything down and she has to get her meds or she will get sicker. It was the C-Diff rearing its ugly head again. It seems to come from nowhere and then it hits her like a ton of bricks. Like before, she felt fine the next day. I am hoping the antibiotics are starting to help. She has been on them for 5 days now.

Tonight we went to her favorite outdoor restaurant again - Maggiano’s. During the meal she came over to me and whispered in my ear “If I have to throw-up, will you run to the bathroom with me” I thought “Oh no, here we go again” She assured me that she felt fine, she was just scared that it might happen again because it comes on so suddenly. She wanted to have a plan in place. I wish she didn’t have to worry about things like this. We had a nice meal though. It is so nice to do normal things for a change, like going out to dinner.

Earlier today we went to George’s Garage and had lunch. They have an outdoor eating area and a jazz trio was playing. It was a beautiful day - sunny and in the low 70s. We went to Duke Gardens after lunch and it is just beautiful there right now. Everything is blooming and Jillian had a fun time picking out her favorite flowers.

Thank you for checking in on Jillian. Please keep her and all of her transplant friends in your prayers.

Friday, April 11, 2003 1:21 PM CDT

Just a quick update today. We dropped Jillian’s labs off this morning and headed over to the clinic. Everything looks fine which made me real happy. Her labs are bouncing back from being so sick earlier this week. Her platelets had dropped but are coming back up again. We thought she might need some potassium today but her level was fine. The Gatorade and sliced bananas she has been eating must have done the trick. We are on isolation again at the clinic even though you really can’t catch C-Diff from Jillian. That is fine with me. I would rather they be overly cautious. I like getting our own room to wait in but Jillian hates it. Now that she is feeling better these days, she likes to socialize with everyone in the waiting room and watch videos and play on the computer.

Nonna and Papa arrived safely yesterday. Jillian was very excited to see them. She only asked me a hundred times when they would be here. I am hoping the weather gets better so we can all get out and do something together. What few activities Jillian can do at this point must be outside and the weather just hasn‘t been cooperating this past week.

Please stop by Travis’s web site and wish him a happy birthday today. He is still in PICU and today is his 15th birthday. His parents have been reading all of the entries to him. Please keep him in your prayers.

http://caringbridge.org/hi/twilliams/

Wednesday, April 9, 2003 1:39 PM CDT

Our Tuesday clinic day went well. It was the night before that was crazy. We dropped Ken and Nathan off at the airport Monday afternoon after a great family weekend together. Around 6:00 pm that night, Jillian started to complain of stomach pain and began vomiting. She had no fever or diarrhea so I called the clinic to see if I could get her a dose of Zofran to settle her stomach. I was worried that I couldn’t get her oral meds in her that night. The NP said that she could call it in to a pharmacy or she could come in and get an IV dose. We decided to go to the clinic and get an IV dose. She threw up on the way there and again at the clinic. She got the IV Zofran and we headed home around 8:30 pm. The NP told me on our way out to call the doctor up on 5200 if she gets diarrhea or continues to vomit.

After being home for about 30 minutes she started getting sick again, this time with diarrhea. I called the doctor up on 5200 and she said that the BOP room (the room where you go when the clinic is closed) was taken but should open up soon. I told her Jillian couldn’t hold anything down and I was worried about her getting her meds. I still had IV doses of all of her meds except for the steroid. She told me to hook up her IV meds and when they were done, the BOP room would be ready. They would give her the steroid IV when we came in, along with IV fluids for dehydration. While I was trying to set up her pumps, the now buckets of diarrhea started and Jillian couldn’t stop vomiting. I was really getting worried about dehydration. I couldn’t keep up with cleaning her up and now I am seeing a little blood in both. I called the doctor back and she said to bring her in now and we will make room for her. There seemed to be a lull in poor Jillian‘s sickness so I cleaned her up, put a 4th pair of pajamas on her, and carried her down to the car with all of her pumps running.

They put Jillian in the staff room on 5200. The doctor could tell right away that she was very dehydrated. They hooked her up to some monitors. Jillian’s heart rate was fast and her blood pressure was low and she was cold to the touch. She was also very tired and a little out of it at this point. Actually, I had a little scare. The nurse seemed to be having trouble with one of the monitors but at one point started saying Jillian’s name. Jillian didn’t respond so she started shaking her a little and Jillian said angrily, “WHAT? I‘m tired.” It was just the monitor acting up.

The doctor said she was going to run the IV fluids as fast as they could and give her a boost of steroids to make her feel better. If Jillian didn’t improve after the IV fluids and steroids, they were going to get her a room over on 5100 (5200 was full). However, this definitely did the trick as Jillian started feeling better and went to sleep. The doctor thought it might be a C-Diff infection because of the blood in her stool. Around 4:00 am the nurse came in and said everything looked good as far as her heart rate and blood pressure etc. She said we could go home or stay and sleep. I decided to let Jillian stay and sleep. Jillian felt fine when she woke up. We went home around 7:30 am. I spent the morning cleaning up the apartment from the previous evening activities and doing a load of laundry. We didn’t get to the clinic until 12:30 pm.

Jillian’s test came back positive for a C-Diff (Clostridium difficile colitis) infection just as the doctor suspected. This is actually a relief. It is easy to treat and explains everything. C-Diff is a bacteria in your intestines. When you are healthy and not taking antibiotics, the millions of good bacteria in your system keep the C-Diff under control and in smaller numbers. However, when you are on antibiotics for a long time (like Jillian has been for her ear and sinus infections), the levels of good bacteria are reduced down to a smaller number and the C-Diff can overpopulate inside your intestine or colon making you sick. It is ironic that C-Diff is caused and treated by antibiotics. Jillian will be on another antibiotic for 10 days to treat it. Other than that, she is feeling well again and is back to her chatty self.

Monday, April 7, 2003 10:51 AM CDT

This is Ken updating. We got in Friday afternoon, and we leave this afternoon. This has been one of our shortest visits, but one of the most pleasant. Jillian was very happy to see us; cheerful and chatty. She has a healthy appetite and hasn't been overly tired, and wants to get out and do things, which we did. Laura showed us all their newly-discovered play places, and the weather mostly cooperated except for some rain Saturday. We hiked in the woods and threw stones in the water, and enjoyed lunch outdoors. Yesterday (Sunday) was perfect --sunny, mid-60s-- so we went out to Fearington Village out past Chapel Hill to see the "Oreo" cows.
The pollen around here is something else ...you could wash your car 3 times a day. I gave up wearing contact lenses. The weather folks say today's solid rain should wash all the yellow-green dust away. The next couple of days are expected to be cooler, which should keep the bees from coming out. We discovered that they hover outside the apartment because they've made nests underneath the wooden stairs and in the roof. They don't seem to want to harm us, but Jillian still prefers to be carried past them. We saw Jacob's dad jogging across the parking lot, and Jillian surmised he must be running from the bees. (Nathan says "go ' way, dees", but he's not afraid of them.) Thanks, by the way, to Jacob's family for the nice Easter gifts they brought over. Jillian will miss seeing them, but we know they'll be glad to get back home, hopefully this week.
We're grateful for all your prayers and support, and very thankful for Jillian's continued recovery. Please continue, as we do, to pray for these other kids and their families that Laura has mentioned.

Thursday, April 3, 2003 9:42 AM CST

I thought I would wait and update today because today is day +100 post transplant. We have reached a major milestone and we are very thankful, but we know we still have a long way to go. Jillian had a great week. She has been feeling well and wants to get out and do things (as long as I carry her up and down the apartment stairs to protect her from the bees). The weather has been nice and we have been going to many bee-free parks. I know where all of the parks are in Durham now. Dr. Kurtzberg said she could eat at outdoor restaurants, so we have been doing that for lunch during the week. Jillian is very excited about seeing Ken and Nathan tomorrow. She really misses them (me too) and she has been a little weepy lately about home. She misses her family, friends, teachers, doctors, nurses, and everyone at the clinic. Dr. Kurtzberg told us that we could go home in 3-4 weeks as long as she continues to do well.

Some of Jillian’s 100-day studies came back. She is still 100% donor cells. God bless the family that donated their cord blood - Jillian’s one and only perfect match. Her thyroid functions were a little high but nothing to be alarmed about. Her cortisol level is low and will be for several months. To make up for the difference, Jillian’s steroids were weaned down to maintenance level. If she doesn’t take steroids, she will get sick. Once her body starts producing more, she can be taken off of steroids completely. It is such a low dose that we should start to see the side effects slowly go away over the next several weeks. I just hope she continues to eat and drink well on this low dose. She has been maintaining her weight and I would like to see that continue.

Jillian is also taking her meds orally now. It is weird not to hook her up to all her pumps in the morning and in the evening. I constantly feel like I am forgetting something. She is on two pumps at night but they are quick ones and she won’t be going home on these meds so there is no need to take them orally at this point.

I think I will let Ken do the next update. It is a beautiful sunny day and it is supposed to be 85 F. Jillian has been bugging me to take her to a park since 6:30 am, which is great. Just seeing her smile and laugh is great. It wasn’t too long ago she was sleeping 18 hours a day and feeling lousy. I know there will still be good and bad days ahead so I have learned to really enjoy the good ones.

Please pray that Jillian continues to do well so we can come home. Please continue to pray for our transplant friends (especially Travis http://caringbridge.org/hi/twilliams/ ) and our angel families.

Sunday, March 30, 2003 1:06 PM CST

We dropped Grammie off at the airport yesterday and Jillian wants to know who will be her next visitor. I think Ken and possibly Nathan will be making one more trip before we head home. It is still too early to figure out when we will be coming home. Jillian has felt well for the past several days but I keep waiting for that to change…like it is too good to be true.

Our Friday clinic visit went well. Jillian’s two favorites guys, Jacob and baby Jordan, were in the waiting room with us. Jillian is obsessed about the bee population that has multiplied outside our apartment door because of all of the flowering trees. We talk about bees all day long. Jillian tends to obsess over things on steroids. I told her last night to stop asking about the bees outside and she said it was the same with me asking her over and over if she feels well. She got me there.

Her labs looked fine on Friday except for her liver functions. Two of them had skyrocketed. The only thing that had changed since Tuesday was the antibiotic that was added for her ear and sinus infection. She had been on this antibiotic before with no problems but we changed medications anyway. They had us drop off blood this morning at the lab and the NP called and said everything looked great. One liver function was in normal range again and the other one (while still high) came down significantly.

Thank you to Melissa Sweat and everyone at Kappa Alpha Theta at SMU for the Easter care package. We enjoyed reading all of your notes and we named the duck, Lucky. Another special thank you to Jillian’s Grandma & Grandpa and the prayer group for signing and sending the children’s book of Bible promises. It is a wonderful book. Thank you all for thinking of Jillian and keeping her in your prayers.

We found out that one of our cellmates was moved to PICU this past week - Travis. He and his family have been up on 5200 since November. While we were up on the floor, we would see Travis out in the hall 3 times a day doing his laps. I would always tell Jillian she needed to get out there and do her laps like Travis. He was so determined to get out of the hospital. He is such a nice boy. I pray that he does get out. Please keep Travis (http://caringbridge.org/hi/twilliams/) and all of our transplant friends and families in your prayers.

Wednesday, March 26, 2003 7:12 PM CST

See new photos

The weather has been nice so we have been taking advantage of it and getting outside. Overall, Jillian has more energy these days. She wants to go for short walks or to the park. Dr. Kurtzberg has suggested a few places where we can go and stroll around or window shop. Jillian can go into small stores if there are not a lot people inside. She can also eat outside which we did for lunch the other day at a café. That was really nice for a change.

Our Tuesday clinic visit was good. Dr. Kurtzberg always seems to put things into perspective for me. They can still hear a little wheezing in Jillian’s lungs, which is still believed to be allergies. Jillian’s chest x-ray came back clear again but they want her to use the albuterol inhaler 3-4 times a day. It really has helped with her coughing almost eliminating it. I don’t doubt that all the pollen in the air could be bothering her lungs as my car was completely covered today in yellow/green dust.

Jillian does however; have the start of an ear infection. Dr. Kurtzberg thinks that her sinus problems are related to the ear infection so they put her back on an antibiotic for 21 days. She was on this before when her sinuses were acting up. I have already noticed a difference in her stuffy nose after one dose. Dr. Kurtzberg explained to me that the antibodies (IVIG) that Jillian gets once a week do not include the antibodies that fight ear and sinus infections (that would be IVAG or OG or something like that). Jillian has to start making those antibodies on her own which could take several months. Therefore, it is very common post transplant to get ear and sinus infections.

Dr. Kurtzberg also assured me the roller coaster (as I call it) of feeling well for a couple days, then having diarrhea and a stomachache, followed by feeling well for a couple days, and then nausea and vomiting is normal post transplant. Hopefully the feeling well days will out number the others.

So once again, we did not wean her steroids this week or switch to oral meds. They want to clear up her congestion before we change anything. Jillian’s current steroid dose is actually very low and I have been noticing a difference in her anyway. She is definitely chattier these days and less neurotic which is great. I love seeing the old Jillian emerging.

We started her 100-day studies this week so that is progress. Many vials of blood were drawn, actually by Jillian herself. She thought it was really neat how warm all the vials of her blood were. She even flushed her own lines. Her echocardiogram came back normal. She had some problems with the pulmonary tests as her coughing and stuffy nose got in the way. She is also a bit hyper these days from the steroids so she just wasn’t getting the gist of trying to take a deep breath and blowing into the tube as hard and as long as she could. She did it pre-transplant so I know she can do better. I wouldn’t be surprised if we have to do the test again.

Please continue to keep Jillian and her transplant buddies in your prayers.

Friday, March 21, 2003 6:51 PM CST

It turns out that Jillian probably had a virus earlier this week since her hemoglobin and platelets came back up and her liver functions went down. I was real happy to see her labs today. The echocardiogram from last week came back fine so we don’t have to do another one next week when Jillian starts her 100-day studies.

However, it seems when you get over one hurdle there is another one in your way. Yesterday, Jillian could not stop coughing again. I was really getting concerned. This morning it didn’t seem as bad but I was glad we were going to the clinic so I could tell the NP about her coughing. Before leaving for the clinic, Jillian wanted to go for a walk. I was surprised because I usually have to force her to walk. The weather has been rainy, chilly, and very damp lately so we haven’t been going outside. Jillian was walking and coughing but seemed fine. At one point she wanted me to chase her ,which I did, but she ended up having a hard time breathing and catching her breath. This freaked me out. She then wanted to go back to the apartment to throw-up but she just ended up coughing and gagging a few times.

It turns out that her sinuses are swollen again and the NP heard a little crackling in her lungs again. Another respiratory viral battery (nasal swab) was ordered and Jillian did another Albuterol nebulizer treatment. After the treatment the NP heard some wheezing real deep in her lower lungs. This is actually good because we now know where it is coming from and also that her upper lungs are fine. She did another chest X-ray today, which if it comes out clear again, we will use for our 100-day studies next week. The NP thinks that this could be allergies. It is spring here and everything is really starting to bloom. (Here is an interesting note, if Jillian’s donor has allergies, she could develop the same ones. It is too early for her to do that now but I thought that was interesting). Jillian now has an Albuterol inhaler that she uses 3 times a day just like her little brother (Nathan has asthma which he will probably outgrow) Jillian is feeling much better tonight and has hardly coughed at all. I am hoping her viral battery comes back negative and her chest X-ray is clear.

Unfortunately, I must end on a sad note. Our little miracle girl McKenzie passed away this afternoon after a long fight, yet it all happened so quickly. I am heartbroken and at a loss for words. All I can say is that heaven got a very special little angel today. She touched so many lives and taught us all a lot about life. Everyone here will sadly miss her. Please keep her family in your prayers. http://caringbridge.org/nc/mckenziefay/

Wednesday, March 19, 2003 10:44 AM CST

See new address & phone #

We had a nice visit with Ken and Nathan. Since Grammie is here, Ken and I actually got to go out to dinner. It has been a long time since the two of us have gone out together. It was very nice. We had to wait until 9:00 pm. when Jillian’s pumps/meds were done but that was okay. We even got to go out and celebrate a little on St. Patrick’s Day too.

Jillian has had an up and down past few days though. Sunday night her tummy hurt and she kept waking up throughout the night to get sick but she couldn’t get sick. Finally in the morning she threw-up and wasn’t feeling well so Ken took her to the clinic. They didn’t get out of the driveway when she threw-up again. Luckily she was wearing a mask or bright red Gatorade would have been all over the car. I felt so bad watching my skinny-legged little girl come walking back to the apartment to change her clothes. They gave her a dose of Zofran (anti-nausea medicine that has always worked wonders on Jillian throughout chemo. I call it ZoFriend) and 3 hours of IV fluids at the clinic. She then felt great and sent Ken home to get her lunch.

While Ken was at the clinic with Jillian on Tuesday, I stayed home with Nathan and Grammie. While Nathan was taking a nap, we heard a loud crash from the apartment behind us. A few minutes later I went into the kitchen to get something and realized I was standing in two inches of water. The people moving a new washing machine into the apartment behind us dropped it on the water heater and broke a pipe. Our apartment was flooding. I called the office and they sent a carpet cleaning service over. Dr. Kurtzberg said Jillian cannot stay in the apartment until it is completely dry so we are temporarily staying at another apartment. I am not happy with the dampness of the apartment or the cleaning company that came to do the job. I have decided that I would be way too stressed-out to go back to that apartment dry or wet so we are staying here. I have enough to worry about. I don’t need to worry about Jillian getting sick from mold or fungus growing under the carpet. I will be spending most of today moving all of our stuff.

Getting back to our Tuesday clinic visit. Jillian’s labs are a little wacky this week. Her platelets and hemoglobin are down and her liver functions are up. Her cyclosporin levels have been too high. Dr. Kurtzberg thinks Jillian either has a little virus or a little GVH (graft vs. host) GVH is when the body recognizes the new cells as foreign. This is usually found in the skin, liver, stomach, and intestines. We are not weaning her steroids down this week because the steroids and cyclosporin keep the GVH in check. If either gets low, you can have a GVH flare up. We are also not going to oral meds this week until Jillian’s cyclosporin level is in check. Dr. Kurtzberg wants to see where we are at lab wise this Friday and we may start the oral meds.

When we got home from the clinic last night Jillian’s tummy started hurting again and she threw-up. I thought here we go again - she will need some Zofran and IV fluids but this morning she woke up and felt fine and has been eating non-stop. I hope she continues to feel well and her labs come back to where they were.

Please keep our friends in your prayers:
Jacob - http://caringbridge.org/va/jacob
Travis - http://caringbridge.org/hi/twilliams
Cody - www.forcody.org
Jillian F. - http://caringbridge.org/oh/jill

and especially
Mckenzie - http://caringbridge.org/nc/mckenziefay

Saturday, March 15, 2003 8:18 PM CST

This is Ken updating...
Nathan & I are got back in town Thursday. With Grammie staying with Jillian, Laura was able to actually come inside the terminal to meet us.

I can see Jillian's progress since 2 weeks ago; a bit more her boisterous self. I also saw how she can fluctuate; yesterday by the time we got to the clinic around noon she was quite subdued, even tired, with absolutely no appetite. She perked up by later in the afternoon, and today is more active and eating more, which I'm glad to hear, is how she is more often these days. She has those steroid-induced nervous mannerisms Laura has described, but they're minor now.

Friday was supposed to be a routine visit to the clinic but turned into more of an adventure. Laura was concerned that Jillian's cough, which was almost gone, had returned over the past two days. They had Jillian get a chest X-ray yesterday because the nurse practitioner and doctor heard a little crackling in her breathing, but the X-ray came back negative (i.e., clear).

Jillian also had an echocardiogram to make sure her heart is pushing enough blood around her body. The doctor expects that those results will also come back fine and indicated to us that they are just being very cautious and conservative which is fine with us. They did have her do a nebulizer treatment (breathing albuterol vapor) and she's not coughing much today, so maybe it helped or cleared it up. We are hoping this is just the aftermath of her cold.

Yesterday was a busier-than-usual day at the clinic, and as Jillian and I spent much of the afternoon waiting (Laura and her mom kept Nathan occupied elsewhere) it struck me how patient she is with all of this. Sometimes she wants to talk, sometimes she occupies herself with drawing or coloring, and sometimes she just sits quietly. And she takes all the poking and prodding in stride. She has become such a pro at 5 years old. We hope and pray that she'll be able to put it all behind her soon (and that, God-willing, so will the rest of these kids). And once again, thank you for all of your prayers and support.

Please keep our friend Cody in your prayers, as it appears he has relapsed. http://www.forcody.org/
His new treatment is very promising and we know his family would welcome any words of encouragement on his guestbook.

Wednesday, March 12, 2003 10:15 AM CST

We decided not to rush to the clinic yesterday. We got there about 11:30 am and left around 7:00 pm. It was a good day. We got to see all of our friends. We found out that Jacob is in remission, little Cameron is feeling better, and Cody is off of isolation. McKenzie made her rounds and she really looks good. There is a little baby named Jordan that Jillian thinks is cute. She is fascinated by his cyclosporin hair. She calls him a cute little baby cub.

Dr. Kurtzberg is pleased with Jillian’s progress. She has been off of the drug that stimulates white blood cell growth for a week. Her WBC has remained in normal range so that made me happy. They are switching her to oral cyclosporin next week, which is a step towards going home. She needs to be off of her IV meds that she gets at the apartment in order to go home to Florida. Her steroid dose was decreased again. I am hoping some of the side effects will start to go away. She really has a hard time concentrating when she has been on steroids a long time. She hasn’t been playing with her toys, or doing many crafts, or playing on the computer, which are all things she loves to do.

Ken and Nathan are scheduled to arrive tomorrow. The weather is supposed to be nice this week so we hoping to have some fun outside. I’ll let Ken do the next couple of updates.

Please keep the Coble family in your prayers as little Reese earned his angel wings this past Monday http://caringbridge.org/nc/reesecup/

Saturday, March 8, 2003 6:08 PM CST

See new Photo

Spring is here. Today was a beautiful day - in the upper 60s and sunny. I thought it would be a great idea to leave the front door open and let some fresh air into the apartment until I heard Jillian & Grammie yelling that a squirrel was in the doorway ready to come in. I chased it away and shut the door. I forgot we were living in the wilderness.

Grammie, Jillian, and I went for a walk in Duke Forest. We then went for a drive and later rented some videos from Blockbuster. I made a deal with Jillian that she had to walk to the mailroom with us to get our mail and then she could watch her videos. Now that she is feeling better, I want her to exercise. On our way to the mailroom we saw Jacob and his family. They were outside enjoying the nice weather too. Then McKenzie and her Dad drove up because they were in between clinic visits today. It was so nice to see everyone outside of the clinic. Jillian gave everyone a hug including Jacob. McKenzie stayed in the car but Jillian waved to her and said hello through the window. I am not sure McKenzie recognized Jillian with her new cyclosporin look. Jacob and McKenzie both looked good. I just love all these kids.

Our clinic visit on Friday was uneventful - just the way we like it. Jillian is more herself these days. In fact, this is the first day she hasn’t taken a nap or two. Her postnasal drip/cough is getting better everyday and her appetite is finally back.

Tomorrow it is supposed to be nice too. Jillian is going to a Build-a-Bear party at the mall tomorrow morning. Tommy Bennett’s (http://caringbridge.org/ca/bennettboys/) mom and good friend are putting on the party for the kids. They are opening up the store a couple hours before the mall opens up and they are going to wipe everything down so we don‘t have to worry about germs. Jillian will have a good time.

Today was such a good day. I just wish Ken and Nathan were here to enjoy it with us. They will be here next week. I just want to say a special thanks to our family, friends, church, our NC family, and those who only know us through this web site. Thank you for everything - cards, prayers, gifts, messages, well wishes…the list goes on and on. We could never get through this without your love and support. A special thanks to the Pricketts for always picking up Nathan and for feeding our guys. Ken particularly likes Tex-Mex night and the all-you-can-eat-Prickett-Friday-fish-fry is always a hit during Lent.

Please continue to pray for our NC family. Many are doing well and we pray that they continue on that road. Some need an extra prayer:

*Jacob (http://caringbridge.org/va/jacob/) - for his spinal tap on Tuesday to be cancer free
*Douglas & Cameron (http://caringbridge.org/co/nicollbrothers/) - that Cameron feels better and that Douglas has more donor cells and doesn’t need a 2nd transplant
*McKenzie (http://caringbridge.org/nc/mcKenziefay/) - that she gets rid of the CMV ASAP
*Cody (http://www.forcody.org/) - for quick treatment and recovery from the Polyomavirus/BKV

And especially
*Reese (http://caringbridge.org/nc/reesecup/) - his condition is critical and needs to improve this week.

Tuesday, March 4, 2003 9:52 PM CST

I haven’t updated in a while because all we really do is hang around the apartment but that is a good thing.

Sometimes it feels like the post transplant world is 2 steps forward, 1 step back. We made it through the CMV and the nasty cold. Jillian has been feeling better and has been slowly coming out of her Somnolence Syndrome. However, on Saturday she woke up feeling very nauseous and couldn’t keep anything down all day. I thought for sure I would have to take her into the clinic the next day but on Sunday she woke up in a good mood and has felt fine ever since. You just never know.

Today was our big day at the clinic. Tuesdays are long at the clinic but we just make a day of it. I pack a lunch and plenty of coloring books, puzzles etc. Dr. Kurtzberg sees over 30 children on Tuesdays and I always feel that it is worth the wait. I never feel rushed when she is meeting with us and we are encouraged to ask any questions which I do. When I do get tired or antsy at the clinic I try to remember how fortunate we are that Jillian is at this point in her treatment and is doing well. I can’t complain.

We are at day +70 and Jillian’s labs and blood work are ahead of the game. Her platelets and hemoglobin are in normal range. She was taken off two more meds this week and her steroids were decreased again. I am hoping as the steroids are weaned our chatty girl will return. We have seen glimpses of her. Jillian still has a little postnasal drip going on from the cold she had over 4 weeks ago. She tends to cough a little in the morning. I would really like to see that go. The doctors are not concerned, as she never had a positive respiratory viral battery. It is really just more of a nuisance to her at this point.

Tomorrow is supposed to be warm so I hope to get Jillian out walking. Her legs are so skinny from the steroids. We need to build up her muscles again.

Please continue to pray for our little buddy Reese. He is doing better in PICU but still has a ways to go
http://caringbridge.org/nc/reesecup/

Thursday, February 27, 2003 9:43 PM CST

See New Photos

Talk about déjà vu -we had no power most of today at the apartment due to freezing rain. Just when we thought the power was fixed, it kept going off and on which Jillian thought was hysterical. I am still not sure it is going to stay on right now so we have the candles ready.

We had a really nice visit with Ken and Nathan. I got to spend a lot of time with Nathan - playing monster, kickball, wrestling, playing with cars and trucks, taking walks and going to the park and mall. He is 100% boy and very good-natured. He and Ken are such buddies; I really enjoy watching them together. Jillian enjoyed spending time with her Daddy and rarely let him out of her sight. We miss our guys terribly.

Jillian was very excited to see her Grammie. She is feeling much better now and is slowly coming out of her sleepy syndrome. I think having company has perked her up. Even though her steroids are being weaned every week, I am definitely seeing the side effects now. Not the nasty mood swings we used to see on Decadron (a much stronger steroid), but the nervous ticks, grunting noises, short sentences, and basic personality change. She puckers her lips all day long and picks at them. She constantly makes grunting noises, which makes me think she wants something or something hurts but she is just making noises. She has a lot of nervous energy. I am just glad she has some energy. I am sure it won’t be long before the real Jillian emerges.

A big Thank You to the Moms and girls of Daisy Girl Scout Group #1735 for the wonderful care package you put together for Jillian. We enjoyed opening everything. It was very thoughtful of you. Thanks for always thinking of Jillian.

Please say a special prayer for our clinic buddies that are back in the hospital - Jacob & Reese. Jacob is having a rough time with radiation and baby Reese is battling pneumonia. We want so see them back at clinic real soon.
http://caringbridge.org/va/jacob/
http://caringbridge.org/nc/reesecup/

Tuesday, February 25, 2003 10:12 PM CST

This is Ken updating one more time before Nathan and I head back tomorrow.
I was able to give Laura a break from one of the long Tuesdays at the clinic. She got to spend the day with Nathan (although she spent a good while tidying the apartment in our aftermath and in preparation for her Mom’s arrival tomorrow). They were especially busy at the clinic today, and Jillian and I were there ’til just after 7 PM. She slept for part of the time, but it was nice for the two of us to spend time together.
The good news is that her DNA test from last Saturday came back with no detection of the CMV virus, so she is officially off isolation. Also, because all her labs continue to look good, they cut back on some of her meds and her clinic visits down to 2 a week (Tuesdays and Fridays) instead of 3.
We got a chance to walk around Duke Gardens yesterday and feed the ducks. Also took a walk in the woods near the apartment. It’s been a good 6 days here, and Jillian’s not as sad that we’re leaving because Grammie is coming tomorrow. We hope and pray that everyone stays healthy.

Sunday, February 23, 2003 4:39 PM CST

Yesterday's clinic visit went longer than Saturdays usually do, partly because around the time we arrived just before noon, there was some severe weather moving through central NC. A tornado had been reported southwest of Durham possibly heading in our direction, so they were moving all patients in the day clinic out of rooms with or near outside windows. The threat was soon over and no more was made of it, although all the local TV stations were abuzz with weather updates and advisories. Most of the area seems to have escaped any serious damage or problems.
Speaking of the media, many of them, local and national, have been camped out for much of the last week next to the Brookwood Inn a block away from the Hospital because that is apparently where the family of Jesica Santillan was staying.
Laura (this is Ken writing again) continues to be delighted at Jillian's returning to more of her normal self, after days and days of mostly sleeping. I'm sure it's just the natural progression of her Somnolence Syndrome wearing off, although Laura gives at least partial credit to our arrival for perking her up.
We had hoped to get out and run around outdoors, but up 'til today the weather's been too dreary... rainy & cold. Today the sun finally came out, but it's very windy. Jillian can be outside on nice days if we keep her away from crowded areas, but it's too risky if things are blowing around, even though she wears her mask. We took a drive around UNC and Chapel Hill which we hadn't had a chance to see. Tomorrow's another clinic off-day for Jillian, so hopefully the weather will cooperate and we'll get out and have some fun.
One medical note on Jillian... her blood pressure had been a little high the last couple of clinic visits, so they yesterday while we were there they contacted Dr. Kurtzberg, who decided to put her on a medication to bring it back down to the normal range, which it did. They're not too concerned. She'll take a tiny dose 3 times a day until at least her next visit on Tuesday.

Thursday, February 20, 2003 9:10 PM CST

This is Ken… Nathan & I arrived just after midnight this morning after a minor delay in Atlanta. I called Laura from the plane just before we left the gate so they wouldn’t have to wait any longer than necessary for us in the parking garage at RDU, as Jillian of course couldn’t come into the terminal. Jillian didn’t know until they left for the airport to pick us up that we were coming, so as not to disappoint her in case one of us got sick and couldn’t come. She was surprised and delighted to see us (even her sometimes-annoying little brother), and it was so good to see them.
Even though I had seen photos, I was initially taken aback at how thoroughly Jillian has taken on the “cyclosporin look” with the dark eyebrows and scalp hair that is so common on the kids on 5200. I still couldn’t wait to kiss her little steroid-puffed face.
We all went to the clinic today around 11 AM. I stayed with Jillian most of the time while Laura occupied Nathan elsewhere in the clinic and hospital. She’s starting to slowly come out of her constant sleepiness, although she slept for most of the 3 hours that she was getting her meds.
Her labs continue to look good across the board, though.
Once again, I’m just glad to all be together again. Laura really missed Nathan.
Thanks for your continued prayers.

Wednesday, February 19, 2003 10:03 AM CST

I know I just updated Jillian's web site yesterday but I had to write again today. My heart is breaking because we just found out that Jacob has relapsed. Jacob is the 9-year-old boy that Jillian has a crush on. He is the kind of boy you would want your daughter to have a crush on. He is so cute and sweet. He is very popular here with all of the kids because he is so kind. His brother Jonathan is a great kid too. Whenever Nathan would see Jonathan up on the unit, he would point at him and say “Dada”. We couldn’t figure out why then I realized he wears glasses and a baseball hat just like Ken. Nathan was saying he looks like a young Ken.

It is hard not to get close to some of the families here. When something happens to one of the kids here it happens to all of us. Please pray for Jacob and his family. His web site is http://caringbridge.org/va/jacob/
There is a picture of Jillian with Jacob on his web site, which I have put on ours too. Please pray for his healing. We love you Jacob!

Tuesday, February 18, 2003 9:44 PM CST

I caught a glimpse of Jillian tonight. It was brief but it made my day. For the past week Jillian has been sleeping most of the day and her appetite has been dwindling. At first I thought it was from her cold, but Dr. Kurtzberg confirmed today that it was Somnolence Syndrome, a side effect from the radiation she received 8 weeks ago. There is no testing for it. You just have to rule everything else out (i.e. infection, low hemoglobin etc).

Jillian has hardly said a word to me in the past 4 days and she has been tired, crabby, and a little depressed. She slept all day long at the clinic today. At the end of the day, right before Dr. Kurtzberg came in, Jillian sat up and wanted me to tell her the funny stories about Ken getting hurt (she has a sense of humor like her Grammie). So I told her the stories and she was laughing and smiling. It was so nice to see her happy. Then Dr. Kurtzberg came in and I explained to her this is not how she has been acting. She wasn’t surprised. She explained that Somnolence lasts a couple of weeks and gradually gets better. Hopefully we are on the upswing. When we came home Jillian wanted to order a pizza. She barely ate half a slice and crashed again and she has been pretty crabby the rest of the night. That’s okay. I saw a glimpse of her today and I know the real Jillian is in there.

Ken and Nathan are coming to see us tomorrow. I told Ken how tired and homesick Jillian has been and he moved their flight up a day to see her - what a great Daddy. She doesn’t know, so it will be a nice surprise. Tomorrow is our 9-year anniversary too.

On another good note, Jillian may feel lousy but her labs look great. Her platelets are almost in normal range and the same with her hemoglobin and red blood cells. These numbers have been steadily climbing since she was discharged. She hasn’t had a transfusion in over a month. In addition, her CMV test came back negative again. One more negative and we are off isolation.

Saturday, February 15, 2003 10:05 PM CST

A winter storm warning is in effect for tonight and tomorrow. Sleet and freezing rain is on its way. Luckily we don’t have to go to the clinic tomorrow. We are back to 3 days a week. They do want us to drop off a blood sample on Monday because Jillian’s hemoglobin has been going up and down with all of the extra meds.

Jillian continues to feel better. She is still a little congested but much better than before. I wish she would eat more but she has been holding her weight. She is still sleeping a lot. She may have Somnolence Syndrome, which is a side effect of radiation. Anywhere from 4 - 8 weeks after radiation, some children get fatigued and sleep a lot. There is no treating it. You just have to let it run its course. I think once she fully shakes this cold (or whatever it is), she will have more energy like before. She used to bug me to take walks and chase her around the apartment and now she just wants to take baths and sleep on the couch. She is sleeping about 18 hours a day.

In two weeks she will be off of these extra meds. Even if this is just a cold, it has to be treated as if it were a bacterial, fungal, or respiratory viral infection. Luckily all of the tests have come back negative and nothing has grown in the cultures. On the plus side, if any of those infections were brewing in her system, they should be gone now. This just demonstrates how important it is to keep Jillian healthy this year. A simple cold isn’t all that simple for her.

Thank you to Leigh and Emma and her Girl Scout troop for the beautiful window decorations. Jillian had fun putting them up. Thank you to Mackenzie Madison for the care package. Jillian loved everything especially the Teresa doll, which she brought to clinic today. And finally, thank you to everyone who sent Jillian valentine cards, emails, and well wishes via the guestbook. We really do appreciate it.

Thursday, February 13, 2003 8:20 PM CST

New Photos

Jillian is feeling much better today. She is eating more, sleeping less, and is returning to her chatty self. Her congestion has turned into a cough, hopefully a sign that this is just a cold on its way out. No fever today - Yeah! Her repeat respiratory viral battery came back negative and her weekly CMV test came back negative too. In addition, nothing has grown in her blood cultures. She is on a lot of meds (antibiotics & anti-fungal) right now. They don’t mess around here when you don’t feel well and run a fever. I took her to clinic today with 3 pumps running. If I waited for her meds to end, we would never get to the clinic. Hopefully we will be back to a 3-day schedule at the clinic next week.

Thanks to Marissa & family for the valentine care package. Thanks to Jillian’s pre-k class for the beautiful valentines and gifts. Both packages really lifted her spirits when she wasn’t feeling well. She misses you all very much. A special thank you to Ken’s Aunt Betty and her friend Shirley Laule for the prayer blanket. Shirley made a beautiful prayer blanket for Jillian. People from her church laid their hands on the blanket and prayed for Jillian‘s healing.

We hope that Papa gets over the flu soon and can reschedule his trip to visit us. I didn’t tell Jillian her Papa & Nonna were coming this week just incase something like this happened. Had they come, it would have been a surprise. Since they couldn’t, she isn’t disappointed.

Hurray for McKenzie and her family! She was discharged today. McKenzie is the little miracle girl who had 3 cord blood transplants. She and her family were up on the unit for almost 7 months. I wanted to go throw confetti for her departure but Jillian is on isolation and I wouldn’t dream of bringing her up there with a cold. Please sign McKenzie’s guest book and congratulate her family http://caringbridge.org/nc/mckenziefay/ She still has a long way to go (as do all these children) so don’t stop praying.

Tuesday, February 11, 2003 11:12 PM CST

Jillian woke up yesterday not feeling her feisty self. It appears that her stuffy nose had turned into a full-blown cold of some sort. She has been running a low-grade fever and sleeping a lot. I took her to the clinic yesterday because I was concerned. They gave her some antibiotics and drew some blood for testing. So far nothing has grown in the cultures.

Today was a record long day at the clinic - 11 hours. Jillian got her usual meds plus antibiotics and IV fluids, a repeat respiratory battery, a repeat CMV test, and her portacath accessed. Dr. Kurtzberg wants to keep an eye on her so we are back to going to the clinic everyday. She changed a lot of her meds to cover a wider spectrum of antibiotics and antifungal medicines. If Jillian doesn’t start eating more they are putting her back on TPN. She was eating and drinking very well up until a few days ago. She has lost a little weight. Dr. Kurtzberg is hoping this is just a cold and will be better in a couple days. She did inform me that if Jillian’s temperature goes above 101.5, she would be admitted to the hospital for observation. We really won’t know more until the end of the week when the results of her tests are back. Some cultures they watch over several weeks. Nevertheless, she is being treated now for what it could be.

It is a little disappointing because we were just talking about the meds that we were going to wean or change to oral meds. Now we are adding more meds and more pumps. I will do whatever it takes to get her back to her regular precocious self.

On a happier note, Sean was discharged and was at the clinic today. He was the boy going through his second transplant because the first one didn’t work. I am so happy for his family. They were up on the unit for over 3 months. He had a rough road and a second transplant is always riskier but he did it. He looks good too. Rumor has it McKenzie is being discharged this week too. Lots of miracles happening here. Please continue to pray for these children.

Sunday, February 9, 2003 4:55 PM CST

New Photos

“Thank you God for this beautiful day”, Jillian said as we headed home from the park. It was a beautiful day - sunny and not too cold. We slept in and I made Jillian her favorite omelet this morning - ham, mushroom, black olive and cheese (actually “cheese food” since she still can’t have real cheese). It was delicious and a nice way to start our first clinic-free day.

Later we met Cody’s family at the park. Cody is a nice 6-year-old boy who also has relapsed ALL. He also tested positive this week for CMV but doesn’t have the live virus like Jillian. The docs said they could be together at the park just not around the other transplant kids so Jillian and Cody have a lot in common. They fed the ducks and played hide and seek together. Actually Cody was nice enough to humor Jillian, as her hiding skills need much improvement. Thanks Cody, you are a nice guy! Jillian was thrilled to have the company. She really misses playing with other children. However, the fresh air and exercise wiped Jillian out. She is taking a nap right now.

You can check out Cody’s web page at http://www.forcody.org/ His family is real nice so leave them a message.

Friday, February 7, 2003 5:41 PM CST

Jillian has the look - the cyclosporin look. Cyclosporin is a drug that prevents the rejection of Jillian’s new cells. She will be on it for about a year. One lovely but temporary side effect is excess hair growth. All the kids here get really dark eyebrows and start looking the same. Sometimes the little black hairs grow on your upper lip, crown of your head, face, etc. Each child is different except for the eyebrows - they come in first. Jillian has the eyebrows and a dusting on her upper lip. Jillian swears her eyebrows are blue but I told her they were black and she looks more like me now. She said, “When am I going to look like Jillian? No one will recognize me when I go home.” I told her not to worry because her personality will give it away. Of course this is the least of our worries and she still looks cute.

Today is day +45 post transplant, which means we do not have to go to the clinic every day. Hooray! Our clinic days are now Tuesday, Thursday, and Saturday. Our first free day is this Sunday, and if the weather is nice, we are going to Duke Gardens to feed the ducks. It will be nice for Jillian to have some days to herself to just be a kid.

In addition, Jillian’s blood and urine came back negative for CMV. The quantitative CMV test also came back showing 1.2 rlu’s (relative light units). What does this mean you say? That her DNA is barely positive for CMV (a 1.0 rlu would come back “undetermined“). She does not have the “active virus” in her system. It did show up in her DNA though; therefore, nothing has changed regarding her treatment. She is still being treated for CMV as if it were active. She is still on contact isolation as a precaution to the other children. Hopefully it will be negative next week. Jillian will continue to be tested for CMV in her DNA every week until day +100. By day +100 her immune system should be able to fight it. Her immune system is working at about 30% right now.

When Jillian’s steroids are weaned each Tuesday, I notice a drop in her appetite for a day or two then it comes back. This week she lost a pound. I was afraid they were going to put her back on TPN. The nurse practitioner assured me that she would have to lose quite a bit of weight before going back on TPN. However, the doctor told me she needs to be on a high-calorie high-protein diet. (I wish a doctor would tell me that. I could do that quite easily.) Today she has eaten well so that made me happy. Other than that, Jillian is feeling well. We were in and out of the clinic rather quickly today so we went for a nice walk when we got home.

Wednesday, February 5, 2003 9:17 PM CST

The good news is that Jillian’s respiratory viral battery (nose swab) came back negative. The bad news is that her blood culture from Monday came back positive for CMV. The two are unrelated.

Cytomegalovirus (CMV) is a very common virus. By adulthood 75% of us have had the infection. Most children and adults who are infected with CMV do not develop symptoms. During Jillian’s pre-transplant work up, she was tested for viruses that may be dormant in her body. We were not surprised that she had been exposed to CMV (most of us have). However, CMV can be reactivated after a stem cell transplant and is more serious in a person with a compromised immune system. A CMV infection can occur at any time after transplant but is most common within the first few months. The infection can be mild or life threatening if it invades the blood, lungs, liver or other organs. Jillian’s appears to be mild. Actually it doesn’t appear at all as she feels fine. The nurse practitioner told me that the test was very sensitive. Jillian is tested for CMV every week and this week it came back positive. We are adjusting her meds and adding another antiviral agent -ganciclovir, which has been pretty successful in treating CMV.

We were told not to look at this as a setback but as a bump in the road. We know too well that the transplant road is a bumpy road and we are very lucky Jillian’s road has been pretty smooth so far. I remember when I asked her doctors in Florida, why Duke? They said because they have been doing it the longest and they are good at anticipating and treating complications before they happen. So we are going to nip this in the bud as they say. Unfortunately, we are on contact isolation at the clinic for at least 3 weeks. Jillian can’t be around other transplant children (or pregnant women). So we wait in a treatment room away from everyone until she sees a nurse practitioner or goes back to rainbow day (infusion clinic) for her meds. I will just have to bring more stuff to occupy her.

Per my usual request, please keep Jillian and all the children here in your prayers.

Tueday, February 4, 2003 7:00 PM CST

New family photos - not exactly worth framing

The good-byes are getting harder each time. Jillian cried most of the way from the airport to the clinic today after we dropped the guys off at the curb. It was hard for me too. I miss Ken and I have a real hard time saying good-bye to Nathan. I’m his Mama I should be taking care of him but they will be back in a few weeks. We had a nice visit. Nathan looks so cute with his first little boy haircut. He had his first real “time-out” too for decorating the washer, dryer, and laundry room wall with the only non-washable marker in the whole apartment. He had to use that marker. Oh well. Ken was able to get it off the wall by removing a layer of paint with a scouring brush.

Jillian is doing well. Tuesday is her big day at the clinic where she meets with the doctor. They are real pleased with her progress. She seems to be making her own platelets and red blood cells. They took her off TPN (IV nutrition) today since she is now eating and drinking more. That means a lot less work for me. It takes quite awhile to set her TPN up at night. More importantly, Jillian will not be waking up every 2-3 hours to go to the bathroom. More sleep for both of us as I don’t have to carry her TPN bag to the bathroom (yes, I am being completely selfish and thinking of my much needed beauty sleep). Every Tuesday her steroids are weaned but I have yet to see the difference as the strange food cravings continue. I ran out last night while Ken was here to stock up on artichokes.

Jillian is having some sinus congestion but the doctors & nurse practitioners are really not too concerned. She is not running a fever; she is eating, active and generally feeling well so we are just keeping an eye on it. She had a viral battery (suctioned her nose) yesterday, which she was not to pleased about. It is being tested for viruses. She may have a little cold virus. Every Tuesday she gets IVIG, which are antibodies to help her fight viruses so the timing was good. While she got her meds today we watched The Sound of Music. I thought she would enjoy it since she knows all the words and lyrics to Mary Poppins. She kept yelling at me for singing because as Jillian says, “God did not bless me with a very good voice.” I’m glad she liked it because it has been my favorite movie since I was a little girl and I had fun watching it with her.

Sunday, February 2, 2003 4:30 PM CST

See new family photos - not exactly worth framing

This is Ken updating…
Nathan and I arrived late Thursday night (about 4 hours late; a delay in leaving Ft. Myers caused us to miss our connection in Atlanta). We were all glad to see each other. We really missed being all together, and we’ve greatly enjoyed just being able to do that the last couple of days.
Not much new to report. As of today, Jillian continues to do well; all her labs look good and she’s feeling fine. I accompanied her to the clinic the last 2 days while Laura & Nathan got away to do some shopping and playing.
We’re still elated about the test results that showed that Jillian is growing virtually all donor cells. I can’t begin to tell you how grateful I am for all of your prayers on her behalf. And Laura and I are truly touched by the many different gestures of support we’ve received, and the thoughtfulness behind them.
Thanks especially to all the wonderful folks at North Naples United Methodist Church for the prayer cards and special messages. Please know that we take all of your words to heart, and we send our prayers back to you; that is we try to remember your intentions in our prayers, because we realize that so many other people have illnesses, struggles and situations that need God’s help and the intercession of others at least as much as we do.
Laura may have more specifics for you about Jillian’s progress in her next update; she has become quite the pro at all this. I’m a bit overwhelmed.
Thanks for all your messages in the guest book, too. We really enjoy those.

Wednesday, January 29, 2003 at 08:42 PM (CST)

Our latest prayers have been answered. Jillian’s donor test came back >99% donor cells. I should have listened to the doctors and not worried so much but it is hard not to worry. We made it over the next hurdle; however, we are by no means out of the woods. There are still plenty of other things to worry about such as post-transplant infections or complications and of course, relapse. Nevertheless, every hurdle we get over is a leap in the right direction.

Jillian’s labs have looked good and she feels well. She has been holding onto her platelets and hasn’t needed a blood transfusion since she was discharged. She may need blood and platelets this week but that is okay. It is becoming fewer and farther between. Jillian is full of energy but requires a nap everyday. She sleeps a few more hours at night than usual but that is to be expected as she is still recovering.

Good news for the Nicolls family - Douglas is outpatient and Cameron is scheduled to be discharged tomorrow. They are a very nice family from Colorado and both boys are doing well. We couldn’t be happier for them. http://caringbridge.org/co/nicollbrothers/

Monday, January 27, 2003 at 08:57 AM (CST)

I just dropped Jillian’s blood off at the lab in my pajamas and slippers. I don’t think anyone noticed. Jillian was dressed in the same attire but with ladybug slippers. She waited in the car. The drop off is right inside the door so it is kind of like a McDonalds drive-thru. She shouldn’t need anything today so when we go to the clinic later, her labs will be ready and waiting for us. It is quicker than bringing her blood draw with us to clinic. I am learning the tricks of the trade.

Jillian did fine with her IV pentamidine on Saturday. Her best buddy Kelly came to the clinic and colored with her while I slipped out and bought some much needed supplies at the grocery store. Jillian is having her steroid cravings - yes, artichoke dip and take-out Chinese food shrimp with lobster sauce. She can’t have cheese so the artichoke dip was lacking but she managed to eat it all. I will have to ask about shellfish.

Congrats to Jillian’s best buddy, Kelly, who has been accepted to 3 medical schools including her first choice - U of Chicago. Yeah! She will be a great doctor.

Thanks to everyone who has been praying for little McKenzie. It is amazing. Our little miracle girl is doing much better now. http://caringbridge.org/nc/mckenziefay/

Thank you North Naples United Methodist Church for the box of prayer notes. I sat down and read every single one of them. When we opened the box Jillian said, “Wow all these people are praying for me?” I told her there were even more people out there at other churches praying for her.

Thank you NNUMC Kids Club for the lovely banner and the beautiful cards. Jillian recognized most of the names on the cards, which she thought was neat.

We are so blessed to be part of such a loving and supportive church community.

Please pray for donor cells.

Yeah Bucs!

Friday, January 24, 2003 at 05:26 PM (CST)

New Photos

It has been cold in Durham but cold everywhere else I hear too. We got the white fluffy snow that Jillian has been asking for but it has been too cold to play in it. It is funny here. Everything closes down after barely a dusting of snow. They just don’t have the equipment to clear the roads. Today was kind of crazy. Whenever parking is free at the hospital (like after a snow storm), you can’t find a parking spot. After 45 minutes of searching, we finally paid to park at the clinic.

Jillian had her monthly pentamidine breathing treatment scheduled today, which was a no-go. She did fine inhaling the albutertol but the pentamidine tastes terrible and she freaked out under our little plastic tent. We tried 3 licks of lollypop and three breaths of pentamidine and she couldn’t stand the taste or the way it made her throat feel. She was screaming and could not calm down so we will get it via IV tomorrow. The medicine prevents pneumonia, which you definitely do not want to get post transplant. The breathing treatment works better because it gets right down into your lungs, so I really wanted her to do it. The nurse said it is tough at her age to get used to the taste and feeling so they usually end up getting the IV med version.

Thank you North Naples United Methodist Church 1st grade Sunday school for all the beautiful cards you made for Jillian. We received the package today and had fun looking at all of the cards, the book, and the pink Barbie outfit someone snuck in there.

Pray for donor cells.

Go Bucs!

Wednesday, January 22, 2003 at 11:35 PM (CST)

Yesterday went well. Jillian got her 2 IV meds and also some platelets. We watched movies and she participated in the “cellmates” (art activity) in the clinic where she made valentine pictures with some of the other kids. We met with Dr. Kurtzberg who indicated that everything was right on schedule in regards to Jillian‘s progress.

The phone call/6-month home study went well with the adoption lawyer who came out to our house. She commented on how clean the house was…way to go Ken. I am sure it has been like that the whole time we have been gone (ha ha ha). We will have our court date when Jillian and I return. We are re-adopting Nathan in the United States. It is not necessary but recommended and we want to do everything correctly. The court date is more of informality unlike the 2-hour, knee-knocking, voice-cracking, nerve racking interrogation they gave us in Belarus. Your picture is taken with the judge and we all want to be there as a family.

Jillian had school today at the clinic. She was happy to see Miss Lexi and to leave the waiting room for a while to do some school activities. Today they also drew blood from Jillian for the donor test (Fish test). This test indicates whether the cells are donor cells or the individual’s own cells. If they are your own cells, you have to start all over again. We should have the results in a week. I am a bit nervous about the test so please pray for donor cells.

In addition, please pray for little McKenzie. I have mentioned her before. She is the little princess of 5200. She is having a rough time right now and her family is asking for your prayers http://caringbridge.org/nc/mckenziefay/

Monday, January 20, 2003 at 05:26 PM (CST)

There must be something about Ken and I that makes people want to shove microphones and cameras in our faces. Jillian and I were interviewed by a local TV station on our way out of the clinic today. I guess there was a gang related drive by shooting in front of the ER last night. I told the reporter I really knew nothing about it other than that, but they seemed desperate for an interview so we did it. They asked Jillian some questions too about her age and whether she liked the hospital. She replied through her mask, “The hospital is cool”.

So yes, I am one of those annoying people interviewed on the street that you think to yourself (or shout at your TV) “who cares what she thinks”. I haven’t seen it yet because Sponge Bob was on at 5:00 but I will try to watch it tonight at 11:00. I basically said that you have to be aware of your surrounding no matter where you are or what city you live in. Whether that comes across, I don’t know. They were kind of coaxing me to say I am so afraid now, which I am not.

When Ken was here, he was interviewed in front of the hospital by a local TV station about his opinion on cloning. He basically stated that the only person who should be cloned is his beautiful wife because she is so perfect (ha ha ha).

Jillian continues to feel well. We took a walk today, which was nice and good exercise for the both of us. It was a beautiful day - sunny & in the 60s. Her appetite has really increased but is probably from the steroids. I can tell from the foods she is craving - salty, starchy, stuff. Her WBC today was 15.9 and she hasn’t needed platelets or blood in almost a week. She is very energetic but requires a nap everyday. Tomorrow will be a very long day at the clinic. She is getting some IV meds and we will be meeting with her primary physician, Dr. Kurtzberg, about Jillian’s progress.

In addition, tomorrow night is our 6-month post home study for our adoption of Nathan. I can’t be there but will be conferenced in on the phone. I can’t believe it has only been 6 months. It seems like he has always been a part of our family. I do miss my little guy terribly and I can’t wait to see him next week. The hardest part of all of this is being separated from Ken & Nathan.

Saturday, January 18, 2003 at 04:58 PM (CST)

We like Saturdays at the clinic. It’s not very busy. Jillian got a 2-hour IV med in a private isolation room so she didn’t have to wear a mask. We watched “Aladdin” and ate lunch and then came back to the apartment. Jillian has to go to the clinic everyday until day +45 and then it is only 3 times a week. Today is day +25 and her WBC is 8.5. We are keeping an eye on her weight and blood pressure. Both were up this week but today her weight came down a little and her blood pressure was fine. She could be retaining a little fluid from the steroids. She will probably be off and on blood pressure medicine over the next several months, which is very common.

Jillian was quite upset this morning when Grammie cut her trip short and flew back to Naples. She was starting a get a cold (probably from babysitting Nathan who seems to be picking up everything at school. New country, new germs). It was hard on Grammie too, but she knows how important it is for Jillian to stay healthy. It will be a year before Jillian’s immune system recovers so we have to be very careful. Grammie will be back and will stay a lot longer. After many tears Jillian turned to me and said, “I understand. It is okay”. That was very big of her.

People keep asking how they can help us. The best way is an indirect way - become a donor. The link is below. If you are pregnant or know someone who is, please discuss the possibility of donating the baby's cord blood to the National Marrow Donor Program. This along with registering to become a bone marrow donor can save the life of those, like Jillian, who do not have a sibling match. You can also donate blood regularly. It is needed by many. And of course, please pray for Jillian.

Tonight however, I ask that you pray for all the children here, especially for Mitch and the Forslind family (http://www.mitchellkyle.com/). Mitch has been in PICU for a long time now and he is tired. He will be taken off life support tonight with his family around him.

Thursday, January 16, 2003 at 11:42 PM (CST)

Wednesday was a busy day. Jillian was discharged from the hospital and I made several trips to the car and two trips to the apartment with all of our stuff. I know we didn’t arrive with this much stuff. Jillian got a lot of presents being in the hospital over Christmas. Grammie arrived in time for Jillian‘s confetti party, which is a neat thing that they do on the unit. Everyone lines the hall and throws confetti at the kids when they leave the floor. It’s really nice.

I have gone over Jillian’s meds, pumps, dressing changes, cap changes and blood draws with the home health agency three times so I am on my own now. I can call any time with questions and they will come out again if I need them but I think I have a handle on it. It is a lot to remember. Basically you scramble in the morning to get her pumps set, her blood drawn, and get all her meds in her. Then you go to clinic and wait for whatever - more meds, blood, platelets, consults etc. Then you scramble to get home to get her pumps set and her meds in her. Some meds have to run overnight so you don’t want to start them too early or too late. It is a busy crazy day but we are glad we are outpatient and Jillian feels well so I can‘t complain. There are some meds she is receiving now that she won’t be receiving in a week so it will get easier.

We saw one of Jillian's doctors in the elevator. Jillian told her to let Jacob know she says hello. Jacob posted a picture of the two of them on his web site

http://caringbridge.org/va/jacob/

So please check it out along with his web site. He and his family are so nice.

It is snowing right now. We are supposed to get 1-3 inches tonight. Jillian was excited. She wants white fluffy snow not the “icy stuff” that we got last time. I’m with her.

Thursday, January 16, 2003 at 11:11 PM (CST)

Just a quick update to let you know that Jillian was discharged from the hospital yesterday (Wed.) as scheduled, and she and Laura have moved back into an apartment. Laura’s Mom arrived Wed. afternoon. This is Ken updating, and I don’t have too many details other than they have been very busy moving things out of the hospital and over to the apartment. Also they are getting used to administering meds and doing blood draws at home, plus Jillian has to be hooked up through the night for her TPN (intravenous nutrition). They will be going back to the clinic daily as well.

My phone conversation with Laura this evening was cut short because Jillian’s cyclosporin dose was finished and Laura had to tend to her.

Hopefully she or I will have more to tell tomorrow, but so far everybody’s OK.

Monday, January 13, 2003 at 08:20 PM (CST)

We may be going back to the Forest Apartments as early as Wednesday. Jillian’s WBC is 3.8 today (day +20) and she is feeling well with no fevers (knock on wood, cross your fingers, etc.). Jillian told her nurse today “my cells are rockin“. I am so glad she is feeling well but as Ken previously stated, we are “cautiously enthusiastic“. It is not uncommon to be readmitted for an infection/complication.

The discharge nurse came by today and started to teach me how to give Jillian the meds she will be receiving outpatient. She gets various meds in the morning and in the evening via IV push or IV pump. She will be getting TPN (IV nutrition) via a pump overnight while she sleeps until she starts eating more. It was a bit overwhelming but a home health care infusion nurse will come out to the apartment until I am comfortable.

Jillian was very busy today, which was good because she didn’t have time to be sad about Ken leaving. She had school, fun with her best bud Kelly, and participated in an art project in the patient lounge. They let her off of her IV pole for 45 minutes this evening in which she rode the toys out in the hallway practically knocking over Dr. Martin. She wanted her friend Jacob to come out and ride with her but he wasn’t feeling well. She has a little crush on him. Jacob is doing well with signs of engraftment so we are happy for him and his family. Cody’s mom put together a neat collage of all the kids on her son’s web page so people can put a face to a name when you pray for them. It is on the photo page at http://www.forcody.org/ Check it out along with Cody’s web page.

Saturday, January 11, 2003 at 11:42 PM (CST)

All good news today: Jillian’s WBC is up to 2.5, and her ANC is 1,000.
The doctors came by to give us the official word… Jillian has engrafted! Although they can’t say with certainty that the cell growth is from donor cells until they test her at about Day +30 (today is Day +18), engraftment is considered to have occurred when the patient’s ANC (absolute neutrophil count) is above 500 for 3 consecutive days, and that happened today. Dr. Martin also indicated that everything so far seems to indicate that she is recovering at a pace that might allow her to be discharged possibly as soon as late next week.
If my wording seems cautious (this is Ken updating, giving Laura a break), it’s because that’s how we’re trying to handle all of this encouraging news: with cautious enthusiasm. We’re grateful that things appear to be going well, but we remain prepared for complications and setbacks. We just want her to be well; we don’t necessarily care if it happens quickly.
That being said, we also know that she is doing well because she has so many people praying for her. This good news is the latest answer to those prayers. Please continue to pray for all of the kids here and their families, because as Laura has mentioned, many face uphill battles more difficult than ours.
Jillian has been pretty much her regular self in the day-and-a-half I’ve been here. I feel a little guilty that Laura has endured most of her rough spots, but glad for the quality time with her.
Her Best Buddy Kelly came by this afternoon for a couple hours, so Laura & I snuck away for some lunch together.

Friday, January 10, 2003 at 04:54 PM (CST)

See New Photos

Jillian continues to do well. Her WBC is 1.2 today and her ANC has been above 500 for 2 days now. It was in the 700’s today. She has been running a fever off and on which could be from engraftment or a little bacteria from the left over mucositis. She is on antibiotics just in case. Yesterday she was kind of weepy. One of her favorite nurses left early and she whacked her head on a table out in the hall while throwing confetti for one of the kids being discharged. Then her best buddy Kelly showed up right when her fever hit so she had to leave.

Today was a different story. Jillian was in good spirits all day. She did well with her teacher. She and Kelly played with horses and watched “The Little Mermaid” while I went for a walk. I realized it has been awhile since I have been outside and it felt great. I forgot I was still wearing my bedroom slippers but I don’t think anyone noticed. Of course the highlight of her day was seeing her Daddy this afternoon...mine too.

Hugs and kisses to Nathan. We miss you little buddy!

Wednesday, January 08, 2003 at 02:53 PM (CST)

It has been a busy past two days at the hospital for Jillian. Her teacher, Lexi, comes at 11:00 am every day and does activities with her for about an hour. Emily, the child life specialist, comes and visits her too. Jillian is excited about getting a “best buddy” - a neat program they have at Duke for the kids. Her name is Kelly and she is a senior at Duke. We hear she likes to do art, read stories, and play with Barbies so we are really looking forward to her future visits.

Jillian’s WBC has been .6 for the past 2 days which is good. Her ANC (Absolute Neutrophil Count - the total count of the neutrophils in the blood, which provides an indication of a person's ability to fight infection. In case you were wondering) has been 457 for the past 2 days. We are waiting to cross the 500 mark to begin, as the doctors say, the "3-day countdown". Three consecutive days above 500 is considered engraftment. Then we just pray that they are all donor cells. Jillian sleeps a lot but is pretty active when she is awake. She is eating a little bit more so they might start cutting back on her TPN (IV liquid nutrition). She had bone pain in her legs last night, which is from one of the drugs she is getting to boost her immune system. We are going to use Tylenol for that while still weaning her off of the IV pain medicine she has been receiving.

Thanks to everyone who has been signing her guest book! We really appreciate it.

Per my usual request, please pray for all of our cellmates on 5200. Three cheers for Jordan & Rashaun who should be discharged tomorrow. Jordan (http://caringbridge.org/il/Jordan/) is making medical history as the youngest person to have a cord blood transplant for Hunter’s Syndrome.

GROW CELLS GROW!

Monday, January 06, 2003 at 06:51 PM (CST)

Jillian continues to do well. Her WBC today was .5 (grow cells grow). If it continues to go up this week, they may give us a pass to leave the hospital for a couple hours, which will be nice for when Ken is here. I am not sure where we can go, but just getting off the floor for a couple of hours would be nice. The weekend is still far away and the WBC can change rather quickly so we will see. They are weaning Jillian off her pain medicine since she hasn?t hit the pain button in the past few days. She still sleeps a lot (today until 11:00 am) but when she is awake, she is full of energy. She has been doing her famous booty dance and cha -cha-cha down the hall for the nurses. She was off her IV pole for 15 minutes this evening so we raced tricycles and tractors in the hall. My legs are very sore. That is the most exercise I have had in a long time and I needed it. Tomorrow Jillian starts school. Her teacher will be here at 11:00 am. I think she will enjoy it as she really misses school. At 2:00 pm she has her Cellmates meeting where they do activities with the kids. She has a busy day tomorrow.

Please say a prayer for all the children and families here, especially Keshon?s family, as he passed way yesterday (http://caringbridge.org/sc/keshon/). Many are doing well and are getting ready for discharge but some need an extra prayer.

Sunday, January 05, 2003 at 06:38 PM (CST)

It was 2 years ago today when Jillian was originally diagnosed with ALL. She did so well through treatment, we thought we had it beat. But here we are still fighting this horrible cancer. I do thank God that we are here at Duke and that she still has a chance at a healthy life.

Jillian has felt well all day. She has been walking the halls, hugging the nurses, hanging out in the patient lounge, and playing on a blanket on the floor in our room with her new Christmas gifts. She has been eating a little at night too. Her WBC today is .3 on day +12. Grow cells grow! You could drive yourself crazy with the numbers going up and down and looking for signs of engraftment - fevers, rashes, runny nose etc. The doctors assure me that she is doing well and that every child is different and we will know more on day + 30. One of the nurses came in today and gave Jillian her old Barbie outfits. It was very nice of her to do that. Jillian likes a 9-year-old boy down the hall named Jacob. He and his whole family are very nice. She made a picture for him, which he hung on his door.

Saturday, January 04, 2003 at 10:09 PM (CST)

Jillian slept most of the day today and woke up a new person. Her throat is feeling much better and she hasn‘t hit her pain pump all evening. Her White Blood Cell (WBC) count was .1 yesterday and .2 today. “Grow Cells Grow” is the motto up here. It is a very slow process though. She could be back to 0 tomorrow. Today she had a runny nose and her hands and feet started turning red and swollen (but later went away). These are all signs of engraftment but could be something else, like a reaction to the platelet transfusion she received. It is really too early to tell. I worry when she is feeling lousy and I worry when she is feeling well. When the doctors tell me she has officially engrafted and they are donor cells, I’ll rest a little easier (for this part of the journey at least). We have such a long way to go with many hurdles to get over.

I am starting to get to know some of the children and families up here, which is great because they are all terrific people. It can also be hard especially when things aren’t going well. Please pray for all the children and families of 5200 especially:

McKenzie - a 3-year-old girl who likes to visit everyone. She is very sweet and very popular on the floor. She has been here for 6 months. She is having her 3rd cord blood transplant. http://caringbridge.org/nc/mckenziefay/
Sean - an 11-year-old boy who is having his 2nd transplant. He is such a fighter. I see him walking the halls when he probably doesn’t feel like it.
Keshon - a cute little boy who was moved to PICU last night.
Ryan and his family - an 18-year-old boy who became an angel last night. He was in the room next to ours before he was moved PICU. He was going to start at Princeton this fall.

All the kids here are special because they are all fighters. You must have hope because many miracles have happened here. I have heard of children with long complicated transplants that are doing well today.

Friday, January 03, 2003 at 08:24 PM (CST)

See new photos of Jillian’s recent visitors

Not much new to report on Jillian today. She is still pretty miserable from a combination of the mucositis and steroids. Mornings and waking up from naps are the worst for her as the lesions in her throat make her nauseas. She has been pushing her pain button every 15 minutes. This makes her very groggy so she falls back asleep and wakes up with a sore throat again. I guess it is like having strep throat but 10 times worse. We tried an oral-morphine-mouthwash (I guess you could call it that). This seemed to help and she was fine most of the afternoon and never hit her pain button. It numbs the throat and isn’t absorbed into the body so she doesn’t get sleepy. We are going to continue with a combination of the two pain medicines. I don't want her to be groggy during the day so I can get her to exercise in the hallway.

She did an art project in the patient lounge with our new neighbor Sara this afternoon. She was very weepy this evening when she realized all her family visitors had gone home. She is looking forward to her Daddy and Grammie coming to see her. She told a nurse today that she was going to cross off the days on a calendar until they come.

Thursday, January 02, 2003 at 03:51 PM (CST)

Today is the first day since transplant that Jillian hasn’t felt well which is right on track according to the doctors. She was up most of the night because her throat was so sore. About 10 days out from transplant the mucositis (throat/mouth sores) peaks and plateaus until she starts making her own cells. They have increased her pain medicine, which she can control with a button that she pushes. Jillian was very nauseas this morning. She has been running fevers off and on which is also right on schedule. Her doctors told me that they get nervous when they don‘t run fevers at this point. So I guess you could say that it is good news that she doesn’t feel well.

Jillian was happy to see Uncle David today who drove for two days from Nashville to see her. She thinks he is a funny guy and didn’t want him to leave. He is going to come visit her again tomorrow before he heads back.

Up until now there was only one other girl on the floor besides Jillian - she is probably about two years old. However, today a little girl named Sara moved into the room next to us. She came by to say hello to Jillian. They are about the same age and have the same haircut. Sara is very cute and she showed me a picture of herself with hair and I showed her a picture of Jillian with hair - Jillian was sleeping at the time. Maybe they can become friends.

Monday, December 30, 2002 at 09:31 PM (CST)

It has been a busy past few days here at Duke. I have officially moved out of our apartment and into our tiny room on the pediatric BMT floor. Many nurses have commented on how "homey" we have made the room. Everyone likes the poster that Jillian’s school/teachers sent. It has pictures of all of the kids from her grade on it. I have also decorated with pictures of her friends and cousins (so feel free to send us more pictures).

Jillian continues to feel well. She does have more mouth and throat sores, which are starting to hurt (especially in the morning) but she is getting pain medicine for that. She is a little hoarse but still chatty. However, I am starting to see the steroid side effects emerging. She has been a little crabby at times but only towards me. I told her she was being very rude to me today and she said, “Don’t you know that I am getting that medicine that makes me rude, just like in Florida. I can‘t help it.“ I guess she is having selective steroid side effects, which are directed only towards Moms. I’m used to it though. I’m just glad she has the energy to give me a hard time.

Ken and Nathan are in Naples now after an adventurous trip home. They were bumped from their flight in Atlanta and ended up flying with one ticket in first class (Nathan on his lap) to Tampa. Ken then rented a car (a PT Cruiser…cool) and drove the rest of the way home to Naples. They did end up with 4 free round trip tickets (2 each) so that will help with their future visits to NC.

I, on the other hand, have had a rather bad day. I realized today that some rather nice person decided to pull the emblem off my car and key the side of it. I am pretty sure it was done here in the hospital parking lot. I guess someone has nothing better to do over the holidays than vandalize the cars of people who are visiting sick family members and friends in the hospital.

Jillian is really enjoying Nonna and Papa’s visit. Her daily question is, "What time are they coming to see me today?". It keeps her mind off of Ken and Nathan being gone, although she has already asked when Ken was coming back.

Friday, December 27, 2002 at 02:53 PM (CST)

Thanks for all of your Christmas wishes.
As of today, Jillian is still feeling well, although she gets tired fairly early in the evening. The doctors say she's doing well; her white blood cell count is virtually nothing, of course, but all the rest of her numbers look good. Everyone says it's nice to see her upbeat and chatty, but that will probably diminish in the coming days as weakness and side effects catch up with her.
Christmas Day was fun for all of us. Santa deposited Jillian & Nathan's gifts at the apartment (because with the nurses coming & going throughout the night it's difficult for him to get into her hospital room undetected, Jillian and her mom decided) and we brought them over in the morning.
We spent the whole day all together in her room, except for a couple breaks for Nathan to get out when he got bored with his new toys. During one of those breaks, the Duke Blue Devil mascot showed up in the hall outside her room window. Jillian wanted no part of him, and hid behind the bed. He imitated her by hiding behind a chair as if he was afraid of her, but she was not amused. He left a nice gift for her anyway, via the social worker who accompanied him. We also got a visit from 2 life-flight paramedics, who dropped off a stuffed toy Duke Medical Center helicopter.
Jillian is looking forward to Nonna & Papa coming to visit on Saturday.

Tuesday, December 24, 2002 at 08:34 PM (CST)

It's done!
Jillian's cord blood transplant took place just before noon today, and it was a success, just as her doctor and nurses expected it to be. Just before 11 AM they brought in a little bag with 80 milliliters of fluid in it, just 20 ml (about 4 teaspoons) of which was the actual cord blood. We posed for photos and then they hooked it up to the machines and began the infusion(just like a blood transfusion into her central lines going into her chest), which ended right about noon. Laura and I (this is Ken reporting, by the way)and the nurses were were all caught up in the significance of it all, taking photos to capture the moment, but to Jillian it was mostly anti-climactic, and she finally declared, "no more pictures!" (They had given her Benadryl and she fell asleep shortly after it started.)
We do feel there is something profound about her new chance at a healthy life (her "re-birthday") happening on such a special day; the eve of the day we celebrate Jesus' birth. We thank him that she is in his hands and that so many people are praying to him for her and for us.
By about 3 PM Jillian was awake and feeling pretty good.
Santa arrived at her room just as she was finishing in the bathroom so she was embarrassed to come out, meanwhile Laura had just stepped out and Nathan was caught off-guard as this bearded red-coated stranger entered the room. Needless to say, there was suddenly much wailing, and Santa wisely and politely said he'd come back after making his rounds. He did so 20 minutes later and Jillian was much more receptive to him (and 3 pretty swell presents). Nathan was better, too, as long as I held him at a distance.
Dr. Kuertzberg came by and assured us again that Jillian continues to do very well in all aspects of this procedure.
Thanks again for all your upbeat thoughts in the guestbook, and for your prayers.
Merry Christmas to everyone!

Monday, December 23, 2002 at 10:40 PM (CST)

See New Photos

Jillian had her last dose of Cytoxin yesterday & ATG today. Since we have wiped out her immune system, her body isn’t fighting the ATG anymore, so she feels better. No fever, hives, or nausea today so she cruised the hallways again in her glamorous outfit with a Santa hat on this time. She pedaled a tractor ride-on-toy and we played basketball & kicked a soccer ball around. They want the kids out in the hall exercising 3 times a day - walking, riding, etc. It helps in the recovery. Jillian also had a baseline study done on her language skills and development.

All the parents went to a room full of donated toys this morning to pick out 3 toys for Santa to bring to their child’s room on Christmas Eve. A local church made Christmas pillowcases and we wrapped the gifts and put them in the pillowcase. Later a little girl (around 8 or 9 years old) and her family came around and handed out care packages to all the kids. Her mother told me that she was 3 years post transplant and she spent a year with her on this same pediatric BMT floor. Her transplant was a complicated one. She looks great and you would never know it. Some families that had been recently discharged, but their child is still outpatient, came by with toys too. People have been so nice and so generous. I even got a gift today from the grandmother of one of the children on the unit.

I told Jillian that tomorrow was a big day because she was getting her cord blood. She said, “I haven’t gotten that yet?” She figured that she had been in the hospital for 3 days and there were all these bags hanging from the IV pole that one of them must have been the cord blood. She knows it is just like getting a blood transfusion…so what was taking so long? I guess it is a bigger deal (definitely emotionally) for the parents.

Saturday, December 21, 2002 at 10:42 PM (CST)

Jillian started to cry yesterday when I told her she was all done with radiation. She enjoyed being the center of attention at the radiation clinic and she really took a liking to the girls who set up her daily treatments. I told her we could visit them after transplant when she was better. We moved Jillian and all her sanitized stuff into her little room on the pediatric BMT floor. I left with Nathan after about 20 minutes. We will be lucky if we can have him in her room for more than an hour. It is a toddler’s paradise with all the plugs, cords, buttons, sockets, and tubes etc.

Jillian made her debut today pushing her IV pole around the unit wearing a pink and purple leopard print shawl with matching shoes. It was part of a care package from our friend Kim Sweat that was waiting at the door for Jillian when she was admitted. According to Ken, her outfit was a hit with the high school students that were caroling through the halls. Ken will be spending most of his time with Jillian while he is here but we will be switching off tomorrow. Nathan and I had a fun day together. I have really missed my little guy. We went to the mall and rode the carousel together. He enjoyed all the mechanical Christmas decorations and riding the 50-cent kiddie rides.

Jillian felt well all day and cruised the unit and worked on the art project they had going on in the lounge. Unfortunately, she is starting the feel the effects of the Cytoxin (chemo) and ATG -antithymocyte globulin (immune suppressing drug a.k.a. horse serum) tonight. She is very nauseas, has a low-grade fever and just aches all over. This is typical when you start these drugs to get ready for transplant. Dr. Kurtzberg says she should feel well on the day of transplant so we should have a nice Christmas. We don’t want people feeling bad that we are here for Christmas. It is not a bad time to be here. It has been a non-stop Christmas party for Jillian. I don’t think I have ever seen as many Santas in my life as I have waiting around at the Children’s clinic. The Duke law students threw the last party. She participated in all of the activities (some twice) and they all knew her name by the time we left.

Thursday, December 19, 2002 at 10:58 PM (EST)

Ken & Nathan arrived today and we were very happy to see them. After about an hour Jillian and Nathan were fighting so it is nice & comforting to see that things haven’t changed. Nathan loves to play with Jillian and he imitates everything she does. She sang lullabies to him tonight while he rocked himself to sleep. It was sweet. She really did miss him.

Jillian has done well with her radiation this week - no headaches or nausea. It was just the first day that she didn‘t feel well. She skips and sings the whole way down the hall after radiation. She has made a lot of friends at the radiation clinic and comes home every session with a gift from someone. Yesterday a man gave her his cane. It was wrapped up like a candy cane and she liked it, so he gave it to her. She asked him if he needed it to walk and he told her no. Then she said, “Wow, they must have cured you”. He thought it was funny.

Jillian will be getting high dose chemo this weekend to wipe out her bone marrow & immune system to make room for the new. I know it won’t be long before she feels lousy again. Everyone is sleeping right now. I am still up washing Jillian’s clothes for her admission to the hospital tomorrow. Everything has to be washed twice in hot water, dried, and put into zip-lock bags. Tomorrow I will wipe down the toys I am bringing up to her room. Space is limited so I am going to rotate her things.

Tuesday, December 17, 2002 at 08:11 PM (CST)

Yesterday Jillian had her 1st dose of radiation. We had to wait a couple of hours as they were running behind. Jillian entertained a lot of the people in the waiting room. She has been quite the chatterbox these past few days. She is on an 8:00 am - 2:00 pm daily treatment schedule this week. So are a lot of other radiation patients of all ages, so you start to see a lot of the same people in the waiting room. Jillian has done real well with staying still during radiation. The threat of anesthesia keeps her as still as a statue. She watches Pocahontas during her treatments while I wait outside and watch her on a TV monitor. There is a bulletin board with pictures of patients outside the room. I saw pictures of 3 kids who were here for transplants from our clinic in Florida.

Jillian was nauseas and had a bad headache last night. It hit her all of a sudden when we were in the grocery store. She started to feel better once she could keep the Tylenol and Zofran (anti-nausea medicine) down. Today I gave her Zofran before her treatments and she has done just fine - just a little headache, which subsided after Tylenol was given.

Sunday, December 15, 2002 at 11:15 PM (CST)

Jillian and I had a very busy and fun weekend thanks to Uncle Dave and the nice folks at Clear Channel in Raleigh who provided us with the tickets. We went to Disney on Ice - Princess Classics on Friday, the Museum of Life and Science on Saturday, and caught a movie today. If you know Jillian, you know that her favorite was the Princess Classics. However, she enjoyed the hands-on science museum too. I had to drag her out of there when it closed. She played with everything in the museum as we were there most of the day. The highlight was catching and holding a butterfly in the Butterfly House. Today we went to see Treasure Planet at the movie theater.

Tomorrow Jillian starts radiation, which she has never had before. Her doctor says children, especially her age, seem to tolerate it pretty well. Once you start radiation, there is no turning back (not that we would). The results from all of her tests from the past two weeks were good - no red flags. The bone marrow biopsy showed no leukemia or abnormal cells, so we will be using the 6/6 cord blood match which happens to be stored here at Duke. Had there been any suspicious cells, we would use a 5/6 match. The slight mismatch would help to eliminate any abnormal cells. Jillian had no bone marrow matches on the registry, one 6/6 cord blood match, and several 5/6 cord blood matches. The beauty of cord blood is that you do not need a perfect match. Jillian does have one however, thanks to the North Carolina parents who donated their baby boy's cord blood.

Thursday, December 12, 2002 at 08:00 AM (CST)

(See new photo taken by Duke staff for Jillian's BMT unit floor badge)

Yesterday Jillian had an echocardiogram and stayed real still and watched Cinderella while it was done. I also reviewed the consent for transplant with the nursing program coordinator. I had read the consent before and the literature on stem cell transplantation. I am aware of all of the side effects and complications that can be involved, but it is still hard to hear it out loud. Today Jillian has an eye exam and a hearing test. I will be signing the consent for transplant this afternoon with Dr. Kurtzberg and with Ken conferenced in on the phone.

When Jillian and I came home from the clinic yesterday, we pulled down our street and saw all of the lights on. We were yelling “hooray” until we got to our apartment and found that only half of the apartment complex had power. I called the power company only to find out that we are part of the 10% that will not have power until Saturday (at the latest). I called the apartment office and asked to be moved to an apartment that had power. They were very nice and sent a man over with the keys. He helped us move all of our stuff too. Our new apartment is actually nicer. If you have sent packages to our old apartment, don’t worry, we still have the keys and will be checking it everyday. I will also put a note on the door with our new apartment number. I will post our hospital room address next Friday when Jillian is admitted.

Tuesday, December 10, 2002 at 07:32 PM (CST)

Jillian had her surgery early this morning. They were able to put in the single line with the triple lumen and also leave in her port. The doctor wasn’t sure until he got in there. This was good news. This will make changing the dressing easier (one dressing instead of two) and she won’t need her port replaced. Jillian did real well. She wasn’t scared. The surgery room was so big and intimidating, she just kept looking around at all of the equipment until she fell asleep. She is a bit sore today but we have pain medicine to help with that.

We still do not have electricity at the apartment. We are at our third hotel. We will be here until we can go back to our apartment. I must admit it is getting old - the packing and unpacking and eating take out food etc. It makes you appreciate electricity, which you always take for granted. Thanks to everyone who has been signing our guest book. We enjoy reading your posts. I’ll get to my email soon. Jillian likes to watch DVDs on the laptop so my time is limited.

Sunday, December 08, 2002 at 12:28 AM (CST)

I am updating the web page from our hotel room right now. Thanks Ken for updating it yesterday. We are still without power at the apartment because of the ice storm. The first two nights weren’t too bad but last night the temperature really dropped. When you are sleeping with ski hats on, it is time to get a hotel room - if you can find one that has electricity and isn’t full. We got the last room at the overpriced dump we are staying at right now and we are lucky to have it. They expect to have 90% of the power up and running by next Wednesday. We might be staying at the nursing coordinators house until we have electricity again.

Jillian and I went to the laundromat today and then went shopping at the mall…so did everyone else. There is an indoor carousel and train ride at the mall, which she enjoyed. She will have to stay clear of places like that for a year after transplant so we are getting our fill now. We rented some DVDs to play on my laptop at the hotel since the cable is still out in the area. Last night we watched movies in the car with our little TV we hooked up to the cigarette lighter. Jillian thought that was really cool.

We are hoping to reschedule her surgery for Monday or Tuesday to place her central line catheter (Hickman). I was glad it was cancelled. I really didn’t want her to be the last surgery of the day, which actually would have been the last surgery of the night. The staff at Duke didn’t want me to take her back to an apartment without electricity after surgery and without the hospital pagers working. I agreed.

Jillian will have two lines placed on either side of her chest -a double lumen/tube on one side and a single on the other. They think she is too small to get one line or a triple lumen. They are also going to remove her portacath that was placed under her skin when she was originally diagnosed. Again, they think she is too small to leave it in. It can be replaced before we return to Florida. They will also do a bone marrow aspiration and biopsy and a spinal tap and intrathecal chemo while she is under.

We will update again when we can plug in.

Friday, December 06, 2002 at 10:58 PM (CST)

The ice storm that hit the East Wednesday afternoon knocked out power to much of Durham, including the apartment where Jillian & Laura are staying. As of this evening (Fri.) it had not yet been restored. The Duke clinic and hospital were operating on generator power, but whole floors were closed and patients diverted to other areas, including Jillian, whose scheduled surgery in the children's clinic on Thursday to implant her Hickman catheter in her chest was transferred to the general surgery area, where she and Laura waited all day because of some other emergencies and general weather-caused mayhem, only to have the surgery ultimately rescheduled for next Tuesday. At least the hospital was warm and well-lit, unlike the apartment to which they returned, where there was no heat or lights, and no candles, just a little flashlight from the car. Also, the car was low on gas, and venturing out to find an open gas station was risky, as most were closed due to the power outage. Some opened today with long lines of cars, but Laura was finally able to fill up and get to stores to get supplies. Part of the neighborhood where the apartment is had power back today, so hopefully they'll have it tomorrow. Jillian had a CT scan today as part of her pre-transplant work-up.

Monday, December 02, 2002 at 08:23 PM (CST)

We arrived in Durham, NC on Sunday and we are getting settled into our apartment. Jillian had a great time at Disney. We did the character dinner with her Papa & Nonna & Goofy on Friday night and spent the next day at the Magic Kingdom with her cousin Amanda which she was very excited about. Jillian said her dream came true. All of those pennies she threw into the water at the hospital must have worked.

Today they did a lot of preliminary testing - blood workup, chest x-ray, EKG, respiratory viral battery & pulmonary function tests. All of the tests were quick but we had to wait a while in the clinic. They were very busy today after the holiday weekend. We met with Dr. Kurtzberg to go over our schedule for the next 3 weeks. She gave Jillian an elephant beanie baby so Jillian likes that “nice lady doctor.” This is good because she needs to get used to new people and a new hospital.

Tomorrow she is scheduled for a physical and a tour of the pediatric bone marrow unit. It should be a short day so we are going to find the local Chuck E. Cheese (which they don’t have in our area in Florida) and also shop for a winter coat for Jillian. It is a bit cold here.

Friday, November 29, 2002 at 11:33 AM (CST)

We are about to leave on our trip to Disney World and North Carolina. Jillian got to play with her two best friends Marissa and Megan on Thanksgiving before we went over to Uncle Jeff’s and Aunt Cindi’s for dinner. While we were all eating Jillian and Nathan were pushing trucks around in the kitchen. Jillian slipped and hit her mouth on the tile floor. We thought she just bit her tongue or cut her lip but on closer inspection saw that her one front tooth was pushed way in towards her mouth. Ken took her to an oral surgeon this morning and had the tooth pulled. She had a little bit of Valium for the procedure and came home smiling, wobbling, acting goofy, and very proud of her tooth which she held in her hand. Needless to say, our plans have changed a little and her surprise day at Disney will be on Saturday. Jillian is a trooper though. Her hair is falling out, her front tooth is missing, and she takes it all in stride. She still looks adorable.

Monday, November 25, 2002 at 10:22 AM (CST)

Yeah! Jillian was released from the hospital yesterday. We thought she would be there through today or tomorrow but her blood counts jumped way up and no fever for 24 hours. The Neupogen shots worked. Jillian is just glad she doesn’t have to take them anymore. The doctor told her to go enjoy the nice weather and have fun so we are all going to the Christmas Walk downtown tonight. I still might make her wear a mask though.

We are still on schedule to leave for Duke this Friday. We are surprising Jillian with a day at Disney World on our way to North Carolina. We really want to take Nathan with us but he is only good in the car for about 45 minutes. He is getting better though. Until we adopted him, he had never ridden in a car or been in a car seat. When we took them to Sea World this past summer, he was not happy for about 3 out of the 3-1/2 hours of the drive. NC is about a 14-hour drive from here so we think he will have more fun being spoiled by his Grammie. Ken is already making plans for him and Nathan to fly up for Christmas.

We have so much to do this week and it is a short week because of Thanksgiving. If we do not update her page before we go……………have a Happy Thanksgiving everyone!

Friday, November 22, 2002 at 01:14 PM (CST)

We were not surprised that Jillian was admitted to the hospital yesterday. The doctors told us to be ready for her to spike a fever and get admitted by the end of the week. They were right. Her blood counts have been slowly dropping since her chemo last week. Last time she was neutropenic, she didn’t get a fever. We were hoping that would be the case this time but we were wrong. She has been well all week and very energetic. Unfortunately, she has been feverish since yesterday and also nauseous and tired. Today she received a blood transfusion and will be getting platelets later this afternoon. They have increased her Neupogen dose to help her body start making white blood cells to fight infection. Hopefully she will start feeling better soon and we can go home.

Jillian has been very interested in what is in her blood. She has been asking a lot of questions so Dr. MacArthur let her look at her own blood under the microscope, which she thought was really neat. He showed her what red cells and platelets look like. Since she didn’t have any white blood cells, we had to borrow a slide. It was good because she now understands why she has to take different medicine and what the medicine does to her blood.

Monday, November 18, 2002 at 09:18 PM (CST)

Hello everyone. Jillian is home and I will be starting her Neupogen shots tomorrow. She is not crazy about me giving her a shot in the leg. She says, “I wish you were a nurse." I told her I kind of am a nurse. She thinks I am going to miss the correct spot and it will hurt. Her counts are starting to drop from last week’s chemo so we need to be careful. Otherwise, she is feeling well. Next Monday the doctors want to do a spinal tap to see if there are any leukemia cells lurking around in her central nervous system. There is no reason to believe there are any but leukemia cells can cross over and they just want to be sure. They also want to give her some intrathecal chemo in her spine since she hasn’t had any in few weeks.

I took Nathan to the doctor again on Friday. He has had this awful cough that got better a week ago and then got worse again. The RSV virus has been going around so he had a chest X-ray on Friday. They called today to say that it was clear so that is good. He has been taking a stronger prescription cough medicine and he seems to be getting better. Jillian has been wearing a mask around him. She really needs to stay healthy right now. Thank you to everyone who has been signing our guestbook. We really enjoy reading your posts.

Thursday, November 14, 2002 at 08:53 PM (CST)

Jillian has done well with her chemotherapy this week. She has been singing, coloring, doing arts and crafts, talking up a storm, and basically running around the pediatric oncology floor all week. Her two best friends Marissa and Megan came to visit her, which was really nice. It gives her something to look forward to and breaks up the long week.

Tonight is the first night she hasn’t felt as well but they have given her some anti-nausea medicine to settle her stomach. She has hardly eaten a thing all week. You go from one extreme to another – from eating constantly on steroids to no appetite at all on chemo. She will be coming home from the hospital tomorrow after her last round of chemo. We have to bring her back Saturday for her first shot of Neupogen, which will help her body recover from the chemo and build up her white blood cells. A home health care agency will come out to the house on Sunday and Monday to administer the shots and to teach us how to do it. She will need a daily shot of Neupogen for 7 –10 days. She is not going to be happy about this.

Nathan turns 2 years old on Saturday so we are going to have a little cake for him here at the house. We are looking forward to his first birthday celebration with us.

(Please See New Photos Posted)

Saturday, November 09, 2002 at 02:00 PM (CST)

Ken & I returned from Duke this morning and we are glad we went. We met with a lot of people - her doctor, social workers, psychologists, child life specialists, insurance coordinators etc. Everyone was terrific. It is a top-notch place. We now know where everything is and we have an idea of what to bring and what not to bring.

It also brought a sense of reality to it all and we are a bit overwhelmed. Transplant is not a procedure but a long difficult process with many risks along the way. We are so used to our doctors and nurses here and our cozy clinic and oncology floor. Jillian just adores her doctors here in Florida and loves her primary nurse, Miss Debbie, because “she is the best needle giver”. I am sure we will get to know everyone at Duke too.

Our tentative schedule at Duke is (since many have been asking):
Week of Dec 2 preliminary work-up/evaluation – out patient
Week of Dec 9 preliminary work-up/evaluation – out patient
Week of Dec 16 chemo & radiation – out patient
Dec 20 – admission to pediatric BMT unit
Dec 24 – transplant/stem cell infusion
This is very tentative and depends upon how quickly Jillian recovers from next week’s chemo. The preliminary work-up may not takes as long – there are many variables.

Since Jillian's counts are up and she is feeling well, we are all going to a fair tonight and to church tomorrow. These are things we won’t be able to do as a family for quite sometime.

Monday, November 04, 2002 at 08:10 PM (CST)

Jillian had her bone marrow aspiration and spinal this morning and is in remission again. Her back is just a little sore from the procedure but she is doing well.

When we arrived at the clinic this morning, one of the managers of Mel’s Diner was there. Apparently one of the employees at Mel’s made a beautiful quilt with Jillian’s
“Cancer Bugs Me” T-shirt design in the middle of it. It was for the fundraiser. Well, the manager bid on the quilt and won it for Jillian. It was so nice of her I was almost in tears. Jillian was being shy and was preoccupied about the anesthesia she was about to receive but later told me how much she loved her new blanket. We will definitely take it to Duke with us.

Jillian’s blood counts have also come up so we all went out to dinner tonight (Mel’s Diner of course), which is something we haven’t been able to do for a while. The doctor was amazed that she was neutropenic for over 3 weeks and never spiked a fever or was admitted to the hospital. Ken and I leave for Duke this Thursday for 2 days. We are meeting with Dr. Kurtzberg Friday morning to discuss Jillian's cord blood transplant. When we get back, Jillian will be admitted to the hospital here in Florida all next week (11/11 – 11/16) for high dose chemotherapy.

Sunday, November 03, 2002 at 12:25 PM (CST)

Jillian has been feeling well these past few days. She enjoyed trick-or-treating with her friends. She did have a hard time keeping up because of the shoes she was wearing and the extra 6 lbs. she is carrying around from the steroids (when you only weigh 40 lbs. that is a lot). Hopefully today is the last day of steroids. Thank you Anne for the never-ending supply of artichoke dip.

The weather has been nice. We went to a park yesterday and kicked a soccer ball around. It was good to get out of the house and to see Jillian & Nathan running around having fun. We are going to another park today. Nathan does have a touch of bronchitis so we are keeping them separated in the house. Tomorrow Jillian will have a bone marrow aspiration to find out if she is in remission. We are very hopeful that she is so she can move on to the next phase of treatment.

Monday, October 28, 2002 at 08:55 PM (CST)

It was a long day at clinic. Jillian got her chemo and blood transfusion and did well. She is still having an allergic reaction to the L-asparaginase leg shot she received on Friday. When the rash appears we give her Benedryl, which seems to work but makes her groggy all day. Her blood counts are still very low and we have to be careful. However, her white blood cell counts have come back and she is beginning to make red blood cells in her bone marrow – meaning the chemo has weeded out the leukemic blasts in her bone marrow to make room for red blood cells. Next Monday they will do a bone marrow aspiration to see if she is in remission. This afternoon I told her that she would probably lose her hair since I noticed it coming out today when I combed it. She didn’t loose her hair when she was originally diagnosed and treated but she is receiving more chemo and stronger chemo this time around. Needless to say, she was not happy about the news. You can check out her picture on WOLZ’s web site. She designed the t-shirt for the radiothon they are having:

http://www.wolz.com/main.html

Saturday, October 26, 2002 at 01:38 PM (CDT)

Jillian had a rough night. She had an allergic reaction to either the leg shot or eye drops or both. Her right eye was red an itchy so the doctor prescribed eye drops for what was the beginning of conjunctivitis. She woke up last night and the whole right side of her face was swollen, plus her lips and tongue too. She said in tears “I look like Quazimoto”. Then her stomach started hurting and her skin felt tight and itchy. We called her doctor and he said to stop the eye drops and to give her a dose of Benadryl. This definitely helped the swelling and she fell back asleep. This morning her stomach hurt again and she was red and covered in hives. We talked to her doctor and we are giving her Benadryl every 6 hours. She seems fine now, just a little sleepy. No fever though, so that is good.

Friday, October 25, 2002 at 02:26 PM (CDT)

Jillian had a good day at the clinic today. She didn't need a blood transfusion as anticipated but might on Monday. She had her last leg shot which she was very happy about and they also had the pasta bar today at the cafeteria. She has quite an appetite because of the prednisone (steroid) she has been taking for the last 3 weeks. They have lots of Halloween activities going on in the clinic, which is nice and keeps her busy while she is there. Her blood counts came up a little but not much. We still need to keep her away from crowds and public places. Ken and I will be going up to Duke in NC for one night the first week of November. This is so we can meet the doctors and nurses and to get a tour of the hospital and a lay of the land so it won't be such a culture shock in December when she is admitted. Thank you to everyone who has signed our guestbook. We really enjoy reading your notes. Thank you to everyone who has sent cards, posters, balloons, toys, coloring books, and food. It is much appreciated and very thoughtful of you all. We know Jillian has a lot of people pulling for her.

Tuesday, October 22, 2002 at 01:06 PM (CDT)

On October 7th we learned that Jillian had relapsed in her bone marrow. This was quite a shock as she was doing so well. Because she relapsed on treatment, she will need a transplant. She is currently undergoing chemotherapy to get her back into remission. We are tentatively scheduled to go to Duke University Medical Center in early December for a cord blood transplant. We will be in North Carolina approximately 4-5 months for the procedure. Please continue to keep Jillian in your thoughts and prayers.

Tuesday, October 22, 2002 at 12:39 PM (CDT)

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