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Sunday, March 23, 2008 1:22 AM CDT

Everyone who has lost a loved one will tell you that the holidays are tough...you are faced with so many emotions...the joy of the season and the heartache of your loss. For our family today, we add to the Easter celebration the fact that today would have also been Brooke's 9th birthday and it becomes tougher still.

At times our lives seem to move on in a way that seems very routine...basketball, birthday parties, softball, baseball, soccer and homework, but then out of the blue something unexpected will happen and our sorrow over losing Brooke will literally take our breath away. There is no way to prepare for these moments that happen to each of us in different ways and at different times...they come and they go... and we realize that our lives will never be the same. But we have made a choice to not let Brooke's death define our lives, but to let Brooke's life define us. She was a wonderful example of determination, happiness, strength and love all wrapped up in a beautiful little 7 year-old package!

We have had so many caring people ask us how we are doing and how do we do it? Does it get better? We do it for our three children on earth that give us the reason to get out of bed each morning and we realize how fortunate we are to have our health and each other. Our loss has made us appreciate even more the JOY that they bring to our life every day and we have promised ourselves that we will NEVER take those joyful times for granted again. On the other hand, the pain of losing Brooke still travels with us. The nearly two years since her death have proven that the pain will not go away, it has just become a part of who we are and we must learn to live with that pain. We are the family whose daughter/sister died, we are Brooke's parents/siblings.

For our family there is no doubt that the meaning of Easter is even more special now than ever. We are so very THANKFUL for the gift of Jesus so that we can live with the hope of seeing Brooke again. We can't imagine our sorrow, if we did not have that hope! And although we continue to miss Brooke with our every breath, we remain thankful that she was our daughter and sister and that she is healthy and happy in Heaven.

We will ALWAYS be THANKFUL for the gift of Brooke Ann Clemons!

Love,

Bryan and Stephanie

Friday, March 23, 2007 10:02 AM CDT

First and foremost, Bryan and I would like to say thank you (again) to everyone who continues to think and pray for our family. There is no way that we could ever express our gratitude to each one of you…but we will spend the rest of our lives trying to follow your example of reaching out to those in need.

I have to admit that even though it is nearly impossible for me to update this website, I do check almost everyday…partly to see if there are any messages, but mostly to sneak a look at Brooke's bright smile on her 7th birthday! What a happy day that was for our family with no thoughts of what would await us just two weeks later.

So today as we celebrate Brooke's first heavenly birthday, we are a little at a loss for what to do with ourselves…but we will find a way to CELEBRATE the wonderful gift of Brooke's life…just like she taught us!

Love,
Bryan and Stephanie

Happy Birthday Brooke Ann…"We love you ten thousand moons"

Sunday, May 7, 2006 1:43 PM CDT

It was always my intention that this website was for Brooke…every entry was written for her. It was my hope and my prayer that when she was ninety-years old she might look back and read about her accomplishments and most certainly marvel at the outpouring of support that our family has enjoyed (THANK YOU!) I never dreamed that things would unfold the way they did, and I certainly NEVER even imagined for one moment that Brooke would not return home following her surgery…not in my worst nightmare. But not knowing what was ahead for Brooke was certainly a blessing. As difficult as this is to accept, we are so thankful that we did not spend Brooke's last days on earth worrying about life and death issues or watching her suffer. Not Brooke, she lived her life to the fullest until she died.

From Brooke's original diagnosis we always knew that she might die…the statistics were not promising…but we never thought that if she died, it would surprise us like this. Usually when someone dies with cancer, there is warning and time. However, we always prayed that if Brooke was not going to make it, that God would take her quickly. In that regard I suppose that the flu and strep pneumonia, which led to her respiratory distress, were a blessing. Brooke did not suffer. I truly believe that we know what parents feel like when they have a child involved in a fatal accident or a kidnapping. We feel like Brooke just slipped right out of our hands…one day playing with a friend, two days later the ICU on a ventilator, and three days later she is dead. In some ways it still seems so unbelievable.

Following Brooke's death, we flew to Tampa the next morning to tell Morgan and Austin. We met them a little after noon at the airport. Morgan almost immediately put it together and asked, "Is Brooke OK? Is Brooke OK? TELL ME THAT SHE IS ALRIGHT!" Austin calmly got his bag out of the van, but you could tell that he was growing anxious too. We stepped into the airport and immediately sat down to tell them. There were tears and there were questions, but most of all there were two more broken hearts…they love Brooke so much.

Then we tried to regroup and boarded a 3:30 flight to Nashville (that was as close to Louisville as we could get because of Spring Break) where my brother picked us up and drove us back to Louisville. Unfortunately, there had been tornados in Tennessee that afternoon and traffic was terrible. We did not get home until close to 11:00 p.m. As soon as we arrived, we all went into the family room and told Kristen. I started by asking her to name each person…Mom, Dad, Morgan, Austin and Kristen. Then I asked her who was missing. Immediately she said, "Brooke." I asked her, "Where is Brooke?" and she said, "At the hotel." (a.k.a. hospital) But then I asked her, "If Brooke is at the hotel, then who is with her?" Then she looked very confused. We explained that cancer had broken Brooke's body and Brooke would not be coming back to play with her. We explained that Brooke is in Heaven and she doesn't have cancer any more. At first Kristen took the news in stride…she just didn't understand…but she intently looked at each of us with tears streaming down our faces. I will never forget her brown eyes staring at each one of us, so confused. But bedtime brought huge tears for Kristen too. Even at age four, she realized that she wouldn't be sharing her bedroom with Brooke any more.

The next few days were a flurry of activity making the arrangements. Many of our family and friends came right away and helped us tremendously to prepare for the visitation on Tuesday and funeral on Wednesday. There was a lot to be done in a short amount of time.

The visitation on Tuesday, April 11th was unbelievable. The staff at Ratterman's Funeral Home commented that they had never had a visitation with that many people…they estimated that there were as many as two thousand people who attended, and we know of many more who were not able to wait in the long line that night. To those who came or tried to visit, we are so thankful. We were thoroughly overwhelmed by the outpouring of love and support throughout the entire day. Around 5:30, Father Chuck stopped the visitation for a brief prayer vigil. He offered many encouraging words of reassurance and then Ms. Bev Leslie, Brooke's homebound kindergarten teacher, shared a beautiful reflection that she wrote about Brooke:

Brooke---My Student, My Teacher

Brooke was my student, but she taught me much more than I ever taught her.

She taught me to ‘love life’. I will always remember her bright inviting smile and hug when I walked in her back door for school.

She taught me to ‘love learning’ always yearning to know more. It was so exciting to observe her growing love for books and experience her learning to read. What a treat for a teacher.

She taught me to ‘appreciate humor’. Brooke, Kristen, and I always enjoyed a good book together at the end of class. (Any book ‘with Brooke’ was a good book.) One day she chose a book and wouldn’t show it to me right away….all she could do was laugh and laugh. Finally, when she handed me the book, I understood her glee. The book title was The Dog Who Farted. Guess she thought that was a ‘little far out’ for me! What a jokester!!

She taught me to ‘enjoy the moment’. I will never drink pink lemonade without thinking of Brooke. (Thanks Mom B for that glass of lemonade that Brooke had poured for me each day when I arrived at the house.)

She taught me to ‘appreciate the little things’ around us. We enjoyed the flowers, the caterpillars, the bugs, raindrops and rainbows, and all the wonderful things of nature.

She taught me ‘the love of family’. Brooke was such a loving daughter, sister, granddaughter, and niece. She loved her family so much and was so fortunate to have a loving, supportive family. (You can be proud, Bryan and Stephanie.)

Most of all, Brooke taught me the ‘meaning of courage’. I saw her ‘fight’ that ugly disease with all her might. She fought to the end and seldom complained. What a trooper!!

I will always remember her as a very special student, but more importantly, I will remember her as my teacher!

I love you Brooke….Thank you for all you taught me. You will always be in my heart!!

Bev Leslie, April 7, 2006


The funeral service was just as humbling for our family. We started the morning at the funeral home where we again prayed with Father Chuck and shared some final moments. Then as we prepared to go to Holy Trinity for the Funeral Mass, Father Chuck commented that the Mass would be carried out by "the grace of God"…and God did certainly share His grace with us that day! As we approached the church, we were shocked by the full parking lot and the overflow parking down the streets of the neighborhood. We have always felt incredible support during the past 27 months, but never as tangibly as when we walked into Holy Trinity on the morning of April 12th. Our first steps into the building were flanked by a "color guard" of Holy Trinity students. (Personally, I could not make eye contact with those precious children…it was a beautiful expression of their support!) As we entered the church, it felt like Easter…not an empty seat to be found. There must have been eight hundred people there (I guess we will never really know everyone who was there). As a mother, I cannot begin to explain what that meant to me. How does a little seven-year old girl have so much love and support?

The service began as we walked directly to the front of the church. The pall bearers were Duane Tracy, Hal Clifford, Doug Stiglitz and Patrick Barry. Father Chuck placed the funeral pall on Brooke's casket. Once it was placed, each member of our family, both sets of grandparents, and Dr. Soni helped to unfold the pall across the casket to symbolize our release of Brooke to God. The readings were done by one of Brooke's favorite nurses, Tracy Wortham (a.k.a. Crazy Tracy) and Brooke's dear friend, Joan Nell Stiglitz (a.k.a. Loddie).

Father Chuck offered the Homily. He reminded us that there are no magic words for a time like this. However, God did choose a very special time for Brooke to come Home. During Holy Week leading to Easter, we are reminded that Jesus carried His cross and Brooke has carried her cross too…the cross of cancer…and that each of us now carries our cross…the cross of loss. The joy to be found is that the cross leads to Resurrection, but there is no way for any of us to get around the cross.

Then he shared a quote with us by Walker Percy: "Evil (suffering) is not so much a problem to be solved as it is a mystery to be endured." He mentioned that Brooke had spent so much of her of her life as a little girl living in an adult world of hospitals, doctors and testing. He remembered that we had developed our own vocabulary for many of these adult terms and gave them a child-like labels instead…"hotel" for hospital, "special medicine" for chemotherapy, "lights" for radiation, "special cells" for stem cells to name a few.

He went on to make the analogy that in the eyes of the world Brooke was never given the chance to live her life out completely. If you think about a caterpillar, entering the cocoon and then becoming a butterfly…Brooke was never able to burst out with her butterfly wings. But beyond the world's eyes, she has received the wings of an angel which is much more beautiful than any butterfly we could hope to see on earth.

In Baptism, Brooke became a child of God's family. She died with Christ, to rise with Him. Father Chuck said that this is the most precious gift that can be given by parents. No matter what the pain, the gift of her precious life, be it ever so brief, remains a gift. Placing the Funeral Pall is a profound statement of entrusting Brooke back to God, the One who created her and claims her as His own. So beyond the emotions of grief, we cannot lose sight of her life as a blessing and a gift.

Then Father Chuck said that Brooke would not be forgotten, not by us or by God. He remembered her toothless smile and the way she would run away from him at school. He remembered that he performed the Anointing of the Sick for Brooke three times and that following the last one they 'high-fived' together! And maybe, Father Chuck supposed, Brooke knew what was ahead for her. On the morning of her surgery, Brooke jumped into the van without any prompting. Perhaps she knew she had some special place awaiting her…maybe she knew that she was going to Heaven. So from the care of her parents, family, and medical staff she is now in the care of God. While we must let go, God is welcoming her.

In Scripture, Jesus says: "Let the children come to me and do not hinder them. It is just such as these that the Kingdom of God belongs." Brooke has found a new best friend in Jesus and she already has the answers to many of the questions that we have today. No doubt, we shall see her again in the Kingdom of Heaven. There, standing hand in hand with Jesus, Brooke will join Him in welcoming us.

Following the Homily, Bryan read the Intercessory Prayers and Morgan and Austin presented the gifts to Father Chuck during the Preparation of the Gifts. Kristen gave Father Chuck a yellow rose that he placed on Brooke's casket. Then any other children in attendance were encouraged to come forward and give Father Chuck a yellow rose too. He gathered all of the roses together and he left them atop her casket. We were aware that the children would be asked to participate by bringing up the yellow roses, but we did not know that then each of Brooke's first grade classmates would bring up a large yellow daisy to the front also. Each child placed their daisy in one of two vases on either side of Brooke's casket. It was beautiful, it was sad, it was heart wrenching and totally unexpected. I love every one of those little first graders!

After Communion, Father Chuck invited me up to say a few words about Brooke. I had written the words, but I had a friend with a copy just in case I wasn't able to read them. However, the strength of Father Chuck's Homily, the love of the little children, and the support of our friends and family made it easy. I will never forget looking at the congregation and wanting to personally thank each person for loving Brooke and our family. So before I began the prepared comments, I felt compelled to thank everyone for their unbelievable support and prayers and I humbly asked for everyone to continue to pray for us now. Then I offered these words as Brooke's eulogy:

I have said it time and again in the past five days…If God himself had stopped and told me what our future would hold for Brooke and He had given me the option between allowing someone else to be Brooke's mother OR allowing me to have the honor of being her mother for seven years and fourteen days….even with all of the disappointment that surrounds us today and the disappointment that is certainly ahead– HANDS DOWN, I WOULD TAKE BROOKE!

From the beginning, Brooke was a very determined girl. Late on the evening of March 22nd of 1999, Bryan and I were watching a basketball game (no surprise) on television and my water broke with a "pop" that could be heard across the room. So as quickly as we could get to Baptist East, we registered and made our way to Labor and Delivery. Forty-nine minutes after my water had broken and WITHOUT the aid of an epidural, Brooke was born at 12:04 a.m. March 23, at a mere 10 lbs. 6 oz. I think this probably should have been the first clue that Brooke had a style all her own! She came so quickly.

There are many stories of how determined Brooke was in her life, but one that really stands out to me is how important it was for her to be in the middle of the action. When Morgan was on the Holy Trinity 5th grade basketball team, Brooke wanted to be at every practice. Not because she loved the game, but because she loved the feeling of being on the team…being with the big girls. Just two months before Brooke's diagnosis, I can still see her running suicides beside the other kids. Little did I know, in January 2004 Brooke would begin a journey we never expected…and she was diagnosed with Stage 4, Wilms tumor.

To this day, I still believe it was that same determination that carried her through the most difficult challenges of her treatment …chemotherapy, surgery, bone marrow transplant, and radiation. I told you, she's not you average kid.

Not only did Brooke have a healthy dose of determination, she was blessed with a fun-loving spirit to match. When we lived on Stivers Road, all of the kids played in our basement…. in the office/laundry room/playroom. On one particular day, Brooke was playing with a neighborhood friend downstairs. When I had not heard from them in a while, I went down to check on them. Imagine my surprise when I saw two three-year old girls almost completely covered in red paint, with several accents of red on our walls for good measure! They had been having some big-time fun and while I was laughing inside, I tried to point out that painting each other and painting the walls was probably not such a good idea.

Brooke's lasting legacy to me is how well she lived and how well she loved. Despite all of the obstacles in Brooke's short life, she always wanted the best for everyone else. Following the results of her last CT scan that showed an increase in the size of her lung nodule, we had a decision to make at home. Brooke's plan was to go to surgery to remove the nodule, but Morgan and Austin had an opportunity to go to Florida for Spring Break. Brooke made that decision easy. Without reservation she encouraged them to both go, because WE had big plans with her Flat Stanley project from school. And Brooke and Flat Stanley did have many adventures that week…they went for a pedicure and manicure, they went out to eat, they watched the Curious George movie at Tinsletown, they had a sleepover with a friend, they went to the Science Center and they even had a fun-filled trip to the hair salon. They certainly made the best of Brooke's days before surgery!

And so many people helped us to make Brooke's days special too. Brooke loved the medical staff that cared for her and we are so thankful for each and every one of them. To this day I am amazed by their love and compassion for the children. Brooke also loved going to school, being with her friends, and just feeling like a "normal" kid. Her greatest happiness was found in being a first grader, being in her Brownie troop, playing on the swing set at school with her classmates (especially when Grandad joined them and HE did the pushing), singing in the choir, having playdates, and being on the Orange Crush soccer team.

And while her days were filled with so much joy…any parent who has a child that dies, is left to second guess their decisions. What could we have done different? What could we have changed? And while we may still have questions, there is one thing we are confident of…we are certain that Brooke felt the love of her sisters, her brother, her mom and dad, and her grandparents every day of her life on Earth, and we are equally sure that she is rejoicing in the love of God in Heaven now.

It is true that Brooke's life was a miracle in many ways. Her smile warmed our hearts and often comforted US during the toughest of times. We are so very grateful to have been a part of her life and although it may seem that she left too soon for us, I have found comfort and reassurance in Max Lucado's quote from Traveling Light:

"In God's plan every life is long enough and every death is timely.
And although you and I might wish for a longer life, God knows better.

And – this is very important – though you and I may wish a longer life for our loved ones, they don't. Ironically, the first to accept God's decision of death is the one who dies.

While we are shaking heads in disbelief, they are lifting hands to worship.
While we are mourning at a grave, they are marveling at heaven.
While we are questioning God, they are praising God."

And so I suppose if Brooke can lift her hands to worship, and Brooke can marvel at Heaven, and Brooke can praise God…we must find a way to do the same!

And now if you will allow me just one more time I want to say out loud, "Brooke I love you ten thousand moons and I am so very proud to be your mom."



As a final tribute to Brooke, I would like to ask our friend, Ashley Samuels, to come forward and sing "Tomorrow"…one of Brooke's favorite songs from the musical, Annie.



We sang the "Song of Farewell" and we departed the church to "Precious Lord, Take My Hand." Then we went to her burial site at Calvary Cemetery. (The location was perfect because it is right down the street from Bellarmine University where Bryan and I met.) At the cemetery, Father Chuck led us in prayer and the children let a few balloons go into the bright blue sky. After a short stay at the cemetery, we returned home for food and fellowship with our friends and family. Holy Trinity's bereavement committee provided the food and it was fabulous. Several special friends from Holy Trinity and St. Matthews Methodist were nice enough to organize the set up and clean up of the food for us. Everything went very smoothly and it was so nice to come home and have simply everything taken care of.

It was a very special celebration of a very special life!

Thursday, April 27, 2006 9:48 PM CDT

So many people have asked what they could do to help our family. Up until this point I have been hard pressed to answer that question too, thinking (with no disrespect) that if I knew what to do...I would be doing it. However, in a rare moment of clarity I have thought of a couple, simple, special requests:

1. First and foremost, I am committed to keeping Brooke's spirit alive in our family. While she is physically removed from our family, I am hopeful that she will have a lasting impression on each of us. This is where you can help. Oddly enough, my memory is failing me. At times it is difficult for me to even look at a picture and feel connected to Brooke. Memories are slow to come to mind, and it would mean the world to me if you could share your favorite memories of Brooke. It is my intent to print out the entire website, the guestbook entries and YOUR MEMORIES and bind them in a book for each of our children and for Brooke's grandparents.

I am looking for just a couple of things...How did you know Brooke? What special memories of Brooke do you have? Is there any way that Brooke has affected your life? You don't need to write a lot, and don't feel compelled to answer all three questions. Make it easy...if you have a nice memory, send it to us...any information will help. I would be very thankful if you would take a few minutes to send a guestbook entry (if you would like to share your memory with everyone), a direct email to my email address of Stephanie_Clemons@merck.com (if it is more private), or even a handwritten note to our home address. Please know that our entire family will be able to enjoy your thoughts for many years to come!

2. Please continue to pray for our immediate family and Brooke's grandparents. The shock of Brooke's death is an overwhelming struggle for each of us...in different ways and at different times. Please pray for God to help heal our broken hearts and increase our faith.

I still plan to update the website with a summary of the visitation and funeral. I have begun the next update. It is written as a history of the days following Brooke's death. Warning: I have to admit that it is very long and full of details that I hope will help our family in the days, weeks and years to come. But for now, please consider taking a moment to send us your Brooke memory and a prayer!

Love,
Bryan and Stephanie

Wednesday, April 19, 2006 4:18 PM CDT

In the next few days I plan to add a journal entry about Brooke's visitation and funeral, but I have not been able to find the energy to do it justice. For now, let's just say it was an awesome celebration for an awesome little girl!

I did want to add a link for a tribute that was written by Rachel Platt of WHAS-11 news. If you would like to read it, click on Brooke

Love,
Bryan and Stephanie

Sunday, April 9, 2006 1:28 PM CDT

If you would like to view the tribute to Brooke that aired on the news Monday evening please go to the following web link.

www.whas11.com
click on "video online" and look for "A short life well lived."

Updated Hotel information:
Hilton Garden Inn
2726 Critenden Drive
Louisville, Ky 40209
(502) 637-2424

Please ask to for the "Clemons Family"

Brooke's funeral arrangements.

Visitation:Tuesday April 11, 2006
2-8 pm
Ratterman Funeral Home
3711 Lexington Road
Louisville, Ky 40207

Funeral:Wednesday April 12,2006
10:00 am
Holy Trinity Church
423 Cherrywood Road
Louisville, Ky 40207

In lieu of flowers, we are requesting that you consider sending balloons or a contribution to the Children's Hospital Foundation, 234 East Gray Street, Louisville, KY 40202.

Once again, thanks for all of your wonderful support.

Love,
Bryan and Stephanie

Friday, April 7, 2006 9:27 AM CDT

It is with sadness beyond expression that I must tell you that Brooke died sometime before ten o'clock last night.

Despite the tremendous efforts of the critical care team at Kosair, Brooke was not able to overcome her difficult circumstances. Even with the reality of our situation we had not given up hope. In fact just three hours before Brooke died, Dr. Hardin had advised us that this was going to be a marathon, and we needed to pace ourselves. After our discussion, I went to take a quick shower and returned to see that Brooke's blood pressure was dropping. The doctors tried two different medications to increase her pressures, but she did not respond. I stepped out of the room and asked Dr. Montgomery what would be the next step. She was forced to share with me the cold reality that there really were no other options. With that, I went directly to the head of the bed and held Brooke until the end.

Thankfully, the staff was well equipped to help us through. They allowed me to get into the bed with Brooke and hold her. For that, I will be forever thankful. They made phone calls and talked us through the process step by step. With the help of "supernatural" doses of medications they were able to keep Brooke alive until Mom B and Grandad could join us. As much as we have always known that this was possible over the past 27 months, we were woefully unprepared. Dr. Hardin coached us through the final steps reminding us of things we might want to say to her. Bryan and I reminded her of how much we love her, how much Morgan, Austin and Kristen love her, how much Mom B, Grandad, Grandma and Papa love her, how proud we are of her, how tough she is, how it is alright to let go because she had fought long enough, and finally we reassured her of the wonderful future that awaits her in heaven.

Once we had all of her grandparents in the room, family, Father Chuck, friends and staff we prepared to let her go. Father Chuck led us in prayer and Bryan suggested that each person place a hand on her. We were often accustomed to saying, "Brooke, can you feel the love?" Well I am confident that Brooke felt our love last night. With that Dr. Hardin increased her pain medications to a level that would keep her comfortable when they removed the ventilator. Then she whispered to Bryan and I that "Brooke is in God's hands now."

We spent the rest of the evening bathing her and removing her tubes and lines. Dr. Soni removed her chest tube and supported us until the end. We are truly blessed that he was Brooke's physician. When we had finished her bath and dressing her we all were left with the lasting memory of her smile...there was no denying that she had a smile on her face. After a few meetings with the doctors, chaplin and some recommended pictures, we walked away from Kosair shortly after midnight. I never dreamed that I would leave Kosair without Brooke.

Now we face the task of telling the other kids. We decided that Kristen was too young to join us last night and Morgan and Austin are on Spring Break in Florida. We have made arrangements to fly to Tampa today and meet them so that we might tell them face to face. When we return this evening, we will tell Kristen too. Please pray for God to comfort them.

Thank you for your love and support of Brooke. We have been strengthened by each one of you. We have no details on the arrangements. Today we will be focused on telling the kids. Tomorrow we will begin work on the arrangements and when we have them finalized we will update the website.

Love,
Bryan and Stephanie

Thursday, April 6, 2006 4:40 PM CDT

Today has been a very critical day for Brooke. Steph noticed that Brooke's heart rate was suddenly increasing to 160 after midnight. Her oxygen saturation was also dropping.
She spiked a temperature of 104. Brooke was placed on a ventilator around 2:00am. Her sodium was also very low which lead the Doctors to suspect a process known as SIADH, which can be seen in patients after lung surgery. Her pupils were fixed, but she was responding to Stephanie's voice. A ct of her head was ordered to rule out any neurological complications, such as swelling of the brain. When the ventilator was disconnected to take Brooke for the ct, her blood pressure bottomed out. The Doctors and nursed responded immediately with albumin, epinephrine and dopamine to get her pressure back up. A temporary central line was also placed allowing for better access to acommodate all of the drips required to treat Brooke. Brooke was moved to an occilating ventilator and also given Nitric Oxide. Brooke is in septic shock, resulting from a bacterial infection in her lung. She has also tested positive for influenza type B (the flu). She is presently on epinephrine, dopamine, vasopressin to help keep her blood pressure up; vancomycin, ceftriaxone and fluconazole to cover the bacterial infection and prevent a fungal infection; tamiflu to combat the influenza. She is running a temp of 103, which is expected. She is receiving steroids. She received a trasfusion of blood due to low hemoglobin and also to help maintain her blood pressure. Versed and fentanyl have also been given to Brooke to sedate her.
Short term goals are to mantain her oxygen saturation and maintain her blood pressure to give the antibiotics time to work. Her heart rate is running in the 180-190 range, mostly due to the epinephrine. The goal is to slowly wean Brooke off of the drugs as she becomes stronger.

Please continue your prayers for Brooke and her family during this very critical time.

Love,

Tammy Tackett (Friend of the family).

Wednesday, April 5, 2006 7:04 PM CDT

Well, I guess all of yesterday's good news really was just "a little too good to be true."

After a wonderful night's sleep, Brooke's morning started off just fine. She was restful and all of her monitor readings were stable. At 10:45, I noticed that her heart rate had increased quite a bit during the hour. I asked Jennifer, her nurse, if she could take Brooke's temperature. Her temperature was 102.4. That sounded easy enough...a little Tylenol and her heart rate would go down. We gave her Tylenol, but unfortunatley her heart rate did not go down as expected, her oxygen levels began to drop too, and she had some bouts of vomiting.

Visits and input from surgery residents, the "Rapid Response" team, nurses, PICU doctors, Dr. Nagaraj, and two chest x-rays throughout the day still did not improve her symptoms. We tried and tried to stimulate her and get her to breathe deeply as we were instructed, but she was still struggling this afternoon. Finally, when Jennifer did her assessment of Brooke at 4:00 she was not happy when her lungs sounded "squeaky." She said it sounded like Brooke was having difficulty moving air especially on the RIGHT side (go figure, her surgery was on the left side) and she did not like the fact that her heart rate was still in the 150's. Jennifer commented that you just can't keep breathing like that for a long period of time. That was my clue to be concerned. The surgery resident agreed with Jennifer, and the team from the ICU came up to the floor to do an evaluation of Brooke.

The started by asking Brooke a lot of questions and then they did an ABG (arterial blood gas) test to see if Brooke might have too much carbon dioxide in her blood. The results came back very quickly and although the level was high, it was considered to "not be too high." However, by 6:00 the decision was made that Brooke needed to be transferred to the ICU on the 4th floor where she could benefit from regular respiratory treatments.

In direct contrast to the "keep her stimulated and breathing deeply" technique from the afternoon, Dr. Orman (ICU attending) is starting with the "let her rest and we will do repiratory treatments every two hours" technique . I must say that Mom and Dad prefer this approach. The afternoon was heartwrenching. Bryan tried so hard to keep Brooke stimulated as we were told to do, but it was just too much for her to handle. As of tonight, her fever is being treated with Tylenol and her monitor readings are improved...her heart rate is even hovering around 100 now!

We continue to be optimistic about Brooke's recovery, but there is no way to characterize today as anything but disappointing. Please continue to keep Brooke in your prayers. We are hopeful for a better day tomorrow!

Love,
Bryan and Stephanie

Tuesday, April 4, 2006 7:09 PM CDT

Brooke's surgery went very well today. Dr. Nagaraj said:

1. The lesion that was 10mm on her left upper lobe was completely removed and he is convinced that it was Wilms tumor.

2. The other area of interest on her left lung was only scar tissue. However, he biopsied the area just to be sure and we will get the final results later.

3. The "pleural thickening" that had been noted from the most recent scan results, was just a collection of fluid.

All things considered, this was the best news we could have realistically hoped for today.

The morning started early for Brooke. We woke her at 6:20 and got her dressed. She picked up her bag, and walked straight to the van without saying a word. She marched out like such a brave little girl, but there was no mistaking that she was scared. We arrived at admitting promptly at 7:00.

By 8:30, Brooke was in the pre-op area, dressed in her gown and growing ever more nervous. Bill, the anesthesia nurse, gave her some Versed and she quickly began to relax. Then Dr. Auden, her anesthesiologist, did a few magic tricks with disappearing handkerchiefs and coins and Brooke even smiled a little. By 9:00, Brooke was sound asleep and they pushed her bed into the operating room.

At 9:55 we received our first call from Tonya, the OR nurse. She said that they had been busy placing the thoracic epidural (for pain) and that Dr. Nagaraj was only now beginning the surgery. She said to expect to hear from her again in one hour for another update. At 10:30 the phone rang and they asked us to return to the surgery area to meet with Dr. Nagaraj. By 10:40, Dr. Nagaraj explained the surgery results (above) and then he went on to say that Brooke had done very well during the surgery and did not require any blood or platelets. He also commented that she could return to a regular room and did not need to go to the ICU...we couldn't believe our ears! Following her other lung surgery, she was in the ICU for four days. By 12:30 we were reunited with Brooke in Room 741.

Brooke has slept almost all day. The only exceptions were when she got out of bed to go to the bathroom at 5:00 and when she woke up to visit for a few minutes with "Crazy Tracy." By 5:30, all of her vital signs looked good and her nasal oxygen was turned off. However, by 8:00 her oxygen levels were lower, her heart rate was high, she had a temperature of 103.4. Within five minutes there were ten people in the room and a chest x-ray machine.

Thankfully, the x-ray showed that while her lung was not completely inflated, she was not in any danger. By 10:00 her temperature was much improved and the surgeons hypothesized that the suction on the chest tube just needed to be turned up a little higher to drain her lung better. She is sleeping beautifully right now.

Tonight we are overwhelmed with thankfulness ...we are thankful for Dr. Nagaraj's skill, we are thankful for Brooke's strong spirit and body, we are thankful that there were no more lesions on Brooke's lungs today, we are thankful for your prayers, and we are honored and thankful to be Brooke's parents!

But ultimately, "THANKS BE TO GOD!'

Love,
Bryan and Stephanie

Tuesday, April 4, 2006 10:59 AM CDT

PRAISE GOD!

The surgery is now complete. Dr. Nagaraj removed the one nodule and he feels certain that it was Wilm's tumor. The other area of concern he feels was only scar tissue, but he did a biopsy of it anyway. The final bit of good news is that he did NOT see anything else.

We expect to see Brooke very soon, so I will update with more details later tonight.

PLEASE JOIN US IN SAYING A HUGE PRAYER OF THANKS!

Love,
Bryan and Stephanie

Monday, April 3, 2006 9:04 PM CDT

The details for Brooke's surgery were finalized today. Brooke will report to Kosair's surgery floor at 7:00 AM and her surgery is scheduled for 8:30. The surgery is expected to last about two hours.

The past few days have been fast and furious for Brooke. After school on Friday she brought Mary Katherine home to play. They played in the basement, they played outside, they played in the kitchen, they played in her room and just when you thought they could play no longer... they asked to go to McDonald's to play some more! After almost two hours in the playland and Brooke eating NINE chicken McNuggets we returned home to pick up Mary Katherine's backpack from school and take her home...but they had other plans...just a few more games in the basement! Finally around nine o'clock the playdate was complete.

Saturday we rushed around and finalized the packing for Morgan and Austin for their Spring Break adventure with the Brotzge family. At five o'clock the Brotzges picked them up and they headed for Anna Marie Island in a fourteen passenger van compliments of Pat's brother at Colonial Designs. Two adults, six kids, multiple DVD players, IPODs, car seats, cooler and Nintendo Gamecube and they were ready to go. Once the van rounded the corner, Brooke was ready to go. Off to church and then Brooke had a manicure and her very first pedicure (needless to say we took Flat Stanley too). Then we called Dad and he met us at Subway for dinner. After dinner, we were off to Target (where else?) to use her gift cards from her birthday...OH and get a few pictures with Flat Stanley.

Sunday, Dad picked up Brooke's friend, Emily, for an afternoon playdate. They played for awhile at home and then we went to see Curious George at Tinseltown. The kids loved the movie and we took some cute pictures of Stanley at the theatre too. Following the movie we were off to Brown Park for some more Stanley photos and then to Brooke's "home away from home"...McDonald's. By then the girls had decided that an afternoon of fun was simply not enough and Emily's mom graciously allowed her to spend the night. By midnight they were asleep.

Today, Brooke slept in a bit, and by noon Dad, Grandad, Brooke and Emily were off to the Louisville Science Center. They enjoyed the exhibits and also took in the Dolphins at the IMAX theatre with their Flat Stanleys. Twenty-eight hours later, Brooke's second playdate was complete. After dinner, Brooke and Mom ran a few errands to keep busy. We returned around 7:00 to meet Father Chuck for the Annointing of the Sick with Dad and Kristen. The process could be overwhelming for a young child, but Brooke loves Father Chuck so it was actually very comforting for all of us. After Father's visit, Brooke went with me to get a haircut with John-John and Linda. Brooke played and laughed...it was wonderful. You would never guess that she was heading to surgery in the morning! The night was complete after a shower and a visit from Mom B and Grandad. As I tucked Brooke into bed tonight, I asked her how she felt about tomorrow and she said, "Good." Then we talked about how nice it was for Father Chuck to stop by for the annointing, and how important it was for God to watch over her tomorrow and guide Dr. Nagaraj's hands. She agreed that all those things were important and then she said, "It'll work!"

Tonight we are asking for you to especially pray for Brooke tomorrow. Our needs are many:

1. For God to guide Dr. Nagaraj's hands as he does what he is so well-trained to do.

2. For Brooke's lung to be clear of tumors except for the one that we are focused on in the upper lobe.

3. For Brooke's body and spirit to be strong during surgery and as she begins her recovery.

Thank you for sharing your love for Brooke with us. Your notes of encouragement are strengthening us now.

We will update tomorrow.

Love,
Bryan and Stephanie

Thursday, March 30, 2006 10:14 PM CST

Today we finalized the plan for Brooke and she will have surgery on Tuesday, April 4th. She will likely be in the hospital for 4 to 5 days (2-3 of which will be in the ICU).

This morning we met with Dr. Nagaraj and he began by carefully reviewing the results of her latest CT scan:

1. The nodule that is now 10mm needs to be removed. No questions, no doubt.

2. There is also another area that he will examine "while he's in there." He commented that this area appears to be just scar tissue and is not nodular in appearance (good sign). In fact, he said if this was the only area of concern, Brooke would not be going to surgery for this alone, we would have simply watched it.

3. Finally, we discussed a comment in the report that says there is "pleural thickening" which is a thickening of the membrane that envelops the lung. Dr. Nagaraj said that it appears to be more of a fluid collection than actual thickening, but he will know more after surgery. He hypothesized that this just may be her body's way of responding to the nodule. We'll have to wait and see what he discovers on Tuesday.

Most importantly, from our discussion we were impressed with Dr. Nagaraj's conviction about this course of action vs. immediate chemotherapy. He feels very strongly that we are doing the right thing for Brooke. Some physicians would recommend leaving part of the tumor in her lung to gauge the effect of the chemotherapy (i.e. to see if the tumor was shrinking or responding to the chemo). He said that as a scientist he could appreciate that line of thinking, but as a surgeon HE could not do it that way. He couldn't leave cancer inside Brooke. In fact, he said we would have to find someone else do that type of surgery if that is what we wanted...he would not be experimenting with Brooke. Believe me, we do not want any other surgeon and we don't want any experiments either. Dr. Nagaraj is simply the best.

This afternoon, Brooke returned home from school, full of excitement about her test on the human body (kind of ironic). She did very well and she was proud of her score. Then she raced outside to enjoy the beautiful day with her friend, Kara. Somehow it just didn't seem like the time to "break the news" about the surgery. Then Crazy Tracy (one of her favorite nurses from Kosair) stopped by to visit for awhile. Before I knew it, it was 7:30 and I knew that I had to tell her.

She and I went into our bedroom and I started by saying, "I spoke with Dr. Soni and the bad news is that they saw another 'tired bug' on your scan, but the good news is that Dr. Nagaraj is just going to get it out for you and you can go back to doing everything you've been doing...school, choir, soccer, Brownies...everything."

She responded just as you would expect with the biggest seven year old tears you have ever seen, and she melted into my arms. I encouraged her to cry, to just let it out and be mad for awhile. After a few minutes she started to settle down. We talked for a long time. I drew her a picture of how her body looked when she was first diagnosed (lots and lots of tired bugs in both lungs, liver and kidney) and now just ONE TIRED BUG in her left lung! Then there were tears over the fact that we won't be going on Spring Break next week to see Loddie and Doug. I thought I was ready for this one, and I told her that Dad was looking into going on a Disney Cruise after school is finished! Unfortunately, that was not the right answer...we had planned to go see Loddie and Doug and THAT IS WHERE SHE WANTS TO GO! The girl has her mind made up and when I reassured her that we would go visit them after school is out, she felt much better. Then there was a big discussion about the fact that she HAS to work on her Flat Stanley project over Spring Break. (Flat Stanley is a paper doll that each child is suppossed to take with them during Spring Break and take pictures of where they go together with Stanley). We talked about places she might want to take Stanley before Tuesday...somehow I didn't think she would appreciate me commenting that she could take Stanley to the ICU...it just didn't fit the moment. The most encouraging part of our talk came when I told Brooke that I hate cancer and I want her to get that tired bug out right now...no waiting, no delays, let's just get it out. She replied by saying, "I hate cancer too, but I love fighting it." Then she made a funny face like, did I just say that I "love" fighting cancer?...there was no need to explain, she told me everything I needed to know and she isn't done fighting. So all in all, Brooke handled the whole surgery idea pretty well, and despite the fact that there were many tears, there was laughter too (Praise God). I have to admit that she didn't go right to sleep tonight, but she is sleeping great right now.

After talking to Brooke, it was Austin's turn. He tried so hard to be brave. In fact, for the first few minutes there were no tears, but then the poor little guy just burst. When I asked him what bothered him the most, he said that everyone else's family gets to go on a normal Spring Break vacation together. I tried to reassure him that we will go on a normal (if there is such a thing) family vacation, but we need to take care of Brooke first. He didn't disagree, but he couldn't help being disappointed.

Thankfully, Morgan and Austin have been invited to go on Spring Break together with another family. As hard as it will be to be apart, we are hopeful that some fun in the sun will distract them both from the tough days that are ahead.

So tonight we have resigned ourselves to the fact that we are giving and we will continue to give this the very best effort that we possibly can. There is no doubt in our mind that Dr. Soni and Dr. Nagaraj are two of the most compassionate and talented doctors you could ever meet. We know that we are blessed by the fact that they coordinating Brooke's care and

The rest is in His hands...

Love,
Bryan and Stephanie

Wednesday, March 29, 2006 8:07 PM CST

First of all, we would like to thank each person who took the time to say a prayer for Brooke or left a message of encouragement to us. We have been overwhelmed by your love and support, and we are eternally grateful that you have chosen to join us on this journey. Certainly, Brooke did not choose this for herself, but each of you have chosen to lift her up in prayer. As a mother, all I can say is THANK YOU FROM THE BOTTOM OF MY HEART!

Now for the update on today. At 11:00, Dr. Soni called to say that he did not have a plan formulated, but the options are clear:

#1. Biopsy to confirm that it is more Wilm's tumor and then progress accordingly.... or

#2. Surgery right away to remove the mass.... or

#3. Chemotherapy right away, and then surgery later.

Option #1 we agreed does not make a lot of sense. The fact that "it" is growing while Brooke is feeling well, really rules out an infection or inflammatory process. If she truly had an infection (especially one that was growing) she would be sick. She is not sick. Also to put her through a biopsy, when we already know, is unnecessary. Dr. Soni even said, "We know in our heart what this is."

Option #2 is what we did last summer in similar circumstances. In May of 2005 she had a single lesion on her right lung. Dr. Nagaraj performed her surgery and removed the tumor. Since then she has had no further treatment. If one thing is certain, surgery removes cancerous tumors that can be seen, and we like that. However, if there are other cells that are on a microscopic level that cannot be seen, surgery doesn't help with those cells. The past nine months have not been perfect, but they sure have been good for Brooke and good for our family.

Option #3 is probably the most widely accepted medical opinion, but has limitations. First of all, if you asked ten different oncologists to recommend a chemotherapy regimen for Brooke right now, you would get many different opinions. We know, because we asked oncologists around the United States last year and there was absolutely NO agreement on what agents to use. Secondly, chemotherapy only works on cells that are dividing (growing). So if the cancerous cells are dormant at the time of chemotherapy...the chemo won't do any good. Not to mention, the emotional toll on Brooke if she had to drop out of school and return to treatment again. However, the reason to start chemotherapy that we must consider is that IF there are any microscopic cancer cells out there, THEN the chemo could destroy them.

At 4:00, Dr. Soni called back to tell us that he had spoken with Dr. Nagaraj (surgeon). Dr. Nagaraj wants to meet with us in the morning and discuss our options. Our appointment is at 9:50 AM. We plan to go to the appointment without Brooke.

At this point, everything at home remains the same. Morgan is adjusting to the news and we plan to talk to Brooke and Austin tomorrow after school. We are hopeful that our discussion with Dr. Nagaraj will guide us in making the best possible decision for Brooke.

Please pray for clarity as we face the decisions that lie ahead, and for wisdom for Dr. Soni and Dr. Nagaraj as they lead us.

Love,
Bryan and Stephanie

Tuesday, March 28, 2006 8:17 PM CST

I wish that I had better news to report.

Following today's scan we had a plan: I would take Brooke to Gattiland, and Bryan would wait in the hallway until the radiologist would tell him the results. One of the technicians explained that there were 14-15 scans to be read by the radiologist this morning and it might take awhile. When they offered to take his cell phone number and call him with the results, Bryan relented and went back to work at about 12:45 PM.

At 2:00 Bryan called me, and I had no expectations about the results...it had only been just over one hour. Unfortunately, the first words out of his mouth were, "It is not good." He went on to explain that the radiologist called him and said that while her right lung continues to improve, the nodule on the left lung has increased in size again...now to 10 mm (from 7 mm, three weeks ago). After Bryan called me, he paged Dr. Soni. Dr. Soni said that after he had seen the report, he would call us. As of tonight we have not heard from him.

So where do we go from here? When we were at clinic on the 14th, Dr. Soni had said that if the nodule increased in size we would do a biopsy as our first step. From there we will have to weigh our options regarding surgery vs. chemotherapy again.

So how is Brooke? We have not told her anything specific yet. Tonight at bedtime she was acting very silly (almost too silly) and she said that she was not tired. When I told her that I had not spoken with Dr. Soni about the scan (which is true) but that I might call him tomorrow, Brooke told me that she didn't think I should call him. She said if he hasn't called us, then he doesn't know. Finally after a good long snuggle, she relaxed and drifted off to sleep.

So how are the other kids? Morgan is the only one who knows the details...she reads the website, so we talked with her tonight. As you would imagine she is very upset, but in usual "Morgan-fashion," she is focused on getting Brooke well and doing whatever it takes to make that happen...she really is unbelievably strong. Austin does not read the website, so we have decided to wait until we have a plan from Dr. Soni to explain everything to him and to Brooke. It just doesn't seem fair to tell them that the nodule is larger and not give them a plan of action. It is going to be tough enough without then saying, "We don't know what we are going to do."

Tonight we are just numb. It almost feels like we are living in a dream. Sure the questions cross your mind about why this might happen, but we are left with the same bottom line that we had over two years ago: We cannot waste our energy on the questions, we have to concentrate all of our efforts on finding an answer for Brooke.

We would simply ask that you do the same, and while I guess this goes without saying, please pray for Brooke and for her doctors as they try to guide us through. Please pray hard.

Love,
Bryan and Stephanie

Monday, March 27, 2006 7:43 PM CST

The twenty four hours before a scan could drive a person crazy.

However, tomorrow's schedule is fairly well planned... register at 10:00, scan at 12:00, meet Judy and Carmen at Gattiland, return Brooke to school, and then Brooke will ride home on the bus with her friend, Rebecca. When Rebecca's mom called tonight to ask if Brooke would like to come over, she admitted that apparently Rebecca and Brooke had already planned this whole thing at school today...they were just looking for the final OK from the moms!

Thankfully, Brooke took the news of the scan in stride tonight (I'm sure that the playdate with Rebecca helped too). I explained that we needed to go back again tomorrow to check on one area in her left lung. Brooke said, "Yeah, but we don't think it is a 'tired bug' we're done with those." I agreed with her and then prayed that she was right.

Speaking of prayer, we were asked by Holy Trinity to pray for vocations this week. After we read from the book that they gave us and prayed for vocations, we were told that we should encourage each family member to choose someone that they want to pray for. Tonight was easy, and we asked our prayer on behalf of Brooke and Lucas who will be getting their scans done tomorrow. The closing prayer in the book went like this, "Hear the prayers we place before you today and answer them through this same Jesus Christ, our Lord and Brother. Amen."

Thank you for your prayers too...we will update when we know anything!

Love,
Bryan and Stephanie

Sunday, March 26, 2006 9:33 PM CST

Brooke continues to amaze us everyday, but we are still faced with the reality of her scan on Tuesday.

First for the fun stuff...her week has been great. On Monday, Brooke was invited to go home with one of her classmates. The bonus was that Mary Katherine lives close to school so they got to walk home together, rather than ride in carpool. Brooke was thrilled (despite the temperature on Monday!) and had a wonderful time. On Tuesday, Brooke invited Grandad to school for lunch again, and some fun at recess too.

Thursday (March 23rd) was Brooke's actual 7th birthday. Mrs. Sharp helped Brooke celebrate at school by giving her an "It's My Birthday" sticker to wear. At the end of the school day, I brought cookies and drinks to her classmates and all of the kids sang "Happy Birthday" to Brooke while she sat on a stool in front of the class...SHE LOVED IT! After school, Brooke had many visitors to the house. Loddie and Doug stopped by and then the Merrifield's (plus Tyler), Patrick, Mom B and Grandad joined us for ANOTHER birthday celebaration. We ate dinner together and then Brooke finished opening her birthday gifts from her party on Saturday and from us. Brooke has really been using her new keyboard (see photos) and it is so sweet to hear the music(?) in the house.

Friday morning when I went upstairs to get Brooke up for school, she immediately said, "Can Kelsey come home with me after school today and then go to soccer practice with me?" (How does her brain think that fast?) I tried to discourage it only because it was 6:40 AM, but Brooke had all the answers and I was on the phone at 6:50 AM inviting Kelsey over (thanks Sally!) Thankfully, Kelsey was able to come home with Brooke, and they had a great time playing together before soccer.

Saturday, the "Orange Crush" soccer team had their second soccer game of the year. Before the game, Brooke was sizing up the weather (cold and drizzling) and she was not too sure she wanted to even go...actually I was not too sure I wanted to go either. I convinced her to try it for a little while because we would be leaving early to see Austin's final volleyball match of the year. Her soccer game was scheduled for 9:30, and I told her that we would leave by 10:10 for volleyball. As fate would have it, Brooke scored a goal at 10:08 and the parents for both teams all cheered very loudly for her (it was sweet!) Brooke was excited and immediately called Dad on his cellphone at Austin's game and she said, "Goooaaaaal!" She may not score again the rest of the year, but it doesn't matter...Saturday was a terrific day for her!

After church today, Brooke rode her bike outside for a little bit, played at Savannah's house, and then walked home with Savannah and Kristen to play at our house. It may not seem like a lot, but just seeing Brooke's bike in the yard today was wonderful...we are so thankful for all of the joy in Brooke's life and for the joy that she brings to our lives.

Please continue to pray for great results on Brooke's lung scan Tuesday. We register at 10:00, the scan is at 12:00...and we will update as soon as we know the results!

Love,
Bryan and Stephanie

Our friend, Lucas, from Holy Trinity also has his bone scan on Tuesday morning and could use your prayers too!

Sunday, March 19, 2006 9:02 PM CST

Brooke had a very busy weekend!

Friday morning, she started the day by attending the St. Baldrick's celebration at St. Albert the Great School. She looked forward to the event with a lot of anticipation, but the reality of the situation may have been a bit too much for a six year-old. The introductory comments were very emotional and highlighted how many local children have died from cancer. Those comments were great for fundraising, but may have been just a little too much for Brooke. After the event we relaxed at McDonald's with Morgan and Austin before returning to school. You could see her energy level rebound almost instantly and when she spotted her friends at school...she was herself again.

Friday afternoon, Brooke had her very first soccer practice of the season. She loved being with her teammates and seemed to handle the running pretty well too.

On Saturday morning, Brooke's team had their first game of the season. The weather was a little cool, but the Orange "Crush" played well and everyone seemed to have fun...and did I mention that they loved their snack after the game (aren't first graders cute?)

After the soccer game, both sets of grandparents joined us, and Aunt Pam flew in from Florida to get ready for Brooke's birthday party. Without a doubt, her party at My Gym was the highlight of the weekend. She had been to a party there several months ago and told us that same day that she HAD TO have her birthday party there too. The staff was wonderful and knew each of the twenty-five children by name before the fun began. There were obstacle courses, relays, zip lining, and no one stopped for the entire two hours. Brooke said that her favorite part of the party was when they put her up in a swing while the other kids ran in a circle around her singing "Happy Birthday." It was priceless to see the smile on her face and we are thankful that Brooke's friends were able to join her for the afternoon.

Given Brooke's experience at St. Albert's on Friday, we planned for a QUICK visit to St. Baldrick's at 4th Street Live today. Dawn Gee, from Channel 3, hosted the event and made the opening comments and welcomed Brooke and Dr. Soni to the stage. Once again, Brooke was overwhelmed by the situation and really wanted NO part of the attention. After Dr. Soni was shaved and we were walking off of the stage, Brooke's spirits lifted and she said, "That was funny, can we go get something to eat now?" So after a quick picture with Dr. Soni, we were off to get something to eat!

All in all, Brooke did great this weekend. Her energy level was fantastic, her cough was almost nonexistent, she ate very well, and she loved having so many friends and family around her. Obviously, we remain concerned about her upcoming scan which was scheduled for March 28th, however we can't help but be somewhat encouraged by Brooke's actions.

To anyone who donated to St. Baldrick's, thank you from the bottom of our hearts. Please continue to pray for Brooke and all the children fighting cancer.

Love,
Bryan and Stephanie

Wednesday, March 15, 2006 8:53 PM CST

You would think that we would be accustomed to the ups and downs of childhood cancer by now, but unfortunately none of this seems to get any easier. Just when you catch your breath or relax just a little bit...something else becomes an issue. That is exactly what has happened over the course of the past couple days.

To recap, Brooke had a CT scan in February and the radiologists were concerned about some areas on her right lung. The recommendation was made to follow-up on Brooke in 4-6 weeks. On March 8, Brooke went for her follow up scan and we were delighted that EVERYTHING in her right lung had either resolved or gotten smaller (and cancer doesn't get smaller). We were obviously thrilled with the news, BUT now there is an area on her left lung that needs to be followed.

When we talked with Dr. Soni on Thursday of last week, our inital impression was that he was not overly concerned about this new finding on her left lung. However, when we met Dr. Soni at the clinic on Tuesday, he made it clear that Brooke needs to be scanned again in three weeks. We were really caught off guard with the news.

Without going into too many specifics, there is a nodule that has been in her left lung for many months and has remained stable. In February, this nodule was noted to be 5-6 mm in size. The March scan showed a small increase in the nodule size (7mm), and the nodule is contained in an opacity (gray or opaque area) that is 2 x 1 x 1 cm. We really don't understand if the doctors are focusing on just the increase in size of the nodule (which wouldn't seem too bad) or are they focusing on the size of the opacity (which would seem more concerning). We have so many questions, but have resigned ourselves to the fact that none of the answers would change the fact that we really just need the results of the follow up scan on March 29th.

We are doing our best to focus on Brooke and not get too overwhelmed with the latest information. She continues to do great in school, her appetite is very good and she seems to be living life to the fullest. Today Brooke enjoyed a surprise visit from Grandad at lunchtime and then she convinced him to join the kids on the playground too. Grandad had a blast pushing Brooke and her friends on the swings, but he said that the huge hug Brooke gave him was the highlight of the day!

Looking forward, things don't appear to slow down for Brooke. Friday morning, Brooke plans to go to St. Albert the Great for their St. Baldrick's celebration. She has several boys shaving their heads in her honor and Brooke is even going to shave a few herself (these boys are brave!) Friday night she has her first soccer practice at Holy Trinity and then her first soccer game on Saturday morning. Saturday afternoon at three o'clock, Brooke will be celebrating her 7th birthday at My Gym with many of her friends and classmates. Sunday, she will be attending the St. Baldrick's celebration at 4th Street Live and she will have the honor of kicking off the event by shaving Dr. Sandeep Soni's head, around two o'clock. If you would like to make a donation on behalf of Brooke, you can do so online with this link: St.Baldrick's

So once again we have found ourselves in a position of asking for your prayers (OK, we always need them, but we REALLY need them now). Please join us in praying for the nodule in Brooke's left lung to resolve or get smaller...that really is the only birthday gift she needs!

Love,
Bryan and Stephanie

Brooke continues to amaze us.

School is going very well. We received her progress report and academically she is doing an outstanding job. The first graders are studying many fun things...money, weather, and they just finished a special unit on the Chinese New Year. She enjoyed learning about the Chinese so much that she and Mom B went to the Emperor of China restaurant on Saturday to see the Lion Dance performed while the rest of us went to Morgan's basketball game. I'm not sure who had more fun...Brooke or Mom B!

Soccer is right around the corner again. In her backpack last week she received a sign-up sheet for the spring soccer season and she was quick to have Mom sign her up...but under the same conditions (UGH)...Mom has to be a coach.

Socially, Brooke has been a busy girl. This weekend she went to three birthday parties for classmates from school. She also enjoyed a visit from Aunt Karen, Uncle Dave and her cousins from northern Kentucky today. The kids had a blast playing together, going to Target and watching Austin's basketball game.

In the next several weeks, it appears that (God willing) Brooke will be just as busy:

1. This week, a representative of the Children's Hospital Foundation will be coming to the house to take a picture of Brooke for this quarter's appeal letter.

2. Brooke is with two other children in the spring edition of Cartwheels (a Kosair magazine) on "The Many Faces of Childhood Cancer."

3. She is also going to work with the Red Cross to help support their "big" blood drive on February 14th. She might be included on some print advertising and/or be interviewed on a local morning or mid-day news show. Details to follow.

4. Finally (and mark your calendars for March 19th) Brooke is going to participate in the annual St. Baldrick's celebration at 4th Street Live in Louisville. Brooke was asked by Frances, one of the clinic nurses, to shave the head of....DR. SANDEEP SONI! Brooke was delighted to be asked and we are hopeful that the funds raised during this events will continue the mission of the St. Baldrick's Foundation which is to "raise awareness and funds to conquer kid's cancer by shaving heads on St. Baldrick's Day." We would love to see this mission accomplished!

Finally, I have two very important prayer requests. First, please pray for the Eswine family. Miriam (age 14), ended her suffering on Saturday, January 28 at 1:32 PM. We rejoice for Miriam in knowing that she is now cancer free and safely home with Jesus, but we are praying that God will bring healing to this wonderful, faith-filled family. Secondly, please pray for Brooke as she returns for a full body scan this Friday, February 3rd. We will post the results as soon as we know anything.

Love,
Bryan and Stephanie

Monday, January 16, 2006 8:49 PM CST

Brooke has had a great week!

Adjusting back to the five-day school week was no problem and she even returned to her after school activities too. The highlight was going to Brownies on Wednesday. The mom who ran the session did a "Fitness Day" and Brooke came home doing jumping jacks and stretches all night long. She really did have a good time and she received a new patch for her vest...that was BIG!

Unfortunately, Friday after school was not quite as fun. She had a follow-up appointment with the pediatrician from her pneumonia. Dr. Jones said that she sounded great and so that part of the appointment was easy. The tough part was that she also had to continue with her re-immunization schedule (the high dose chemotherapy wiped out all of her immunizations and she has to take them ALL over again). She had to have two shots, and she was NOT HAPPY! When we got done, we did the only thing we knew how to do to recover...we went to McDonald's for a Cheeseburger Happy Meal. Right away, she spotted her classmate, Carl, in the chidren's area and they played between bites. Soon afterwards, her friends Savannah and Ty came in and the party started! Once they finished their dinner, Brooke was invited to Savannah and Ty's house to play. Brooke had a blast and any thoughts of the immunizations were history.

Saturday night, Brooke played with Kara while Mom B babysat and there were reports of lots of game playing and some serious time on the treadmill...Brooke is taking this fitness thing pretty seriously! Sunday Brooke went to one of Austin's basketball games and saw one of her preschool friends, Rowan. Brooke didn't recognize Rowan at first, because they haven't seen each other in so long (~ two years) but when she remembered, it was one of those "moments" as the two of them ran away to play again. It was if they never missed a beat and they talked about getting together again for movie.

Today, Brooke spent most of the day playing with two of her cousins that were visiting from Ohio. Cops and Robbers, Murder in the Dark, and video games topped the days activities. At first, when the kids wanted to go outside to play, Brooke wasn't sure she wanted to join them. Madison said, "C'mon Brooke it wouldn't be the same without you." It was very sweet and in a minute's time Madison, Spencer, Austin, Kristen and Brooke were all outside together. As I looked out the window, I agreed with Madison.

Please continue to keep Brooke in your prayers, and especially on February 3rd when she returns for her scan.

Love,
Bryan and Stephanie

As always, please follow and support our friends Miriam , Kyle , Hannah

Sunday, January 8, 2006 9:05 PM CST

Thankfully, Brooke's cough, energy level and appetite are all much improved! It was either a viral pneumonia that ran its course or the new antibiotic did the trick. Either way is OK with us, we are just so thankful that she is feeling better.

Last week all of the kids were out of school on Monday for the New Years Day holiday. On Tuesday and Wednesday, we let Brooke sleep in as long as she could at home and then we took her to school to finish the school day. It was a nice way for Brooke to get the rest she needed to get over the pneumonia, and transition back to the school routine...she was getting very comfortable being at home! On Wednesday night when we asked her if she thought she needed another half-day at school or if she was ready to try a full day on Thursday, she smirked and said, "I think I should go for a full day...I feel fine!" (It is possible that she took advantage of the situation just a bit, but we were proud of her for telling us that she was ready to go on Thursday.)

The weekend brought a lot of playtime for Brooke. On Friday night, she stayed home with Mom B while the other kids went to basketball. Saturday and Sunday she spent most of her time playing with Kara, Savannah and Ty. We almost had to pinch ourselves at how "normal" the house felt with kids running in every direction. Tonight Lisa and Greg came over for our final Christmas celebration and she had a lot of fun seeing them...Brooke is prone to having crushes on boys of all ages (from age two to in the fifties) and it may be that now Greg is on her list too! We all had fun eating pizza, Lisa's wonderful desserts, and playing Trouble and Hangman together.

We remain so grateful for Brooke's progress and while we cannot know what the future will hold, we are sure that it has all been worth it. Brooke is living her life and we are thankful beyond words. Sure every cough, ache and complaint causes us to cringe inside, but it is a small price to pay to watch our little Brooke be Brooke again!

Thanks so much for continuing to love and care for Brooke on this long road. Please join us in our prayer of THANKS for her improvement, our prayer of HOPE for great results on her scan February 3rd, and our prayer of COMFORT for our friends Miriam , Hannah and Kyle who are facing very difficult circumstances.

Love,
Bryan and Stephanie

Saturday, December 31, 2005 0:00 AM CST

The month of December has been filled with so many fun things for Brooke to do, but honestly most of it has been under the cloud of Brooke's continued cough.

Late in November we took Brooke see Dr. Jones, one of the pediatricians in her office, because she was coughing so much. At the time he said he did not hear anything in her lungs. On December 13th, she had an appointment at the oncology clinic and her labwork was wonderful and her cough was definitely improved. By December 23rd, we felt very strongly that her cough was worsening. We went back to see Dr. Jones for a follow up. He said that he was sure that he heard "crackling" in both lungs on this appointment and he prescribed an antibiotic for her. We left feeling very relieved and expecting Brooke to begin improving. Unfortunately after eight doses of her antibiotic, Brooke's cough still did not seem better and her breathing seemed very rapid and labored. We returned to see Dr. Jones today. He examined Brooke and agreed that her lungs did not sound better. He gave her a breathing treatment and recommended that we take her to Kosair for a chest x-ray. As you can imagine, our minds were racing with ideas as to why she had been coughing so long. Thankfully, the results showed definite infiltrates (fluid) in the upper lobes of both lungs and no signs of any tumors! Her diagnosis is now officially pneumonia and they have started her on a new antibiotic. If it is some type of bacterial pneumonia, she might begin feeling better pretty quickly, but if it is viral...it will just have to run its course.

However despite all of her coughing, Brooke has been a trooper and continued to enjoy most of her holiday activities:

1. On December 6th, she attended a mother-daughter cookie exchange at our neighbor's house with Kristen, Mom and Mom B. As you can imagine, she loved sampling the different cookies, but the highlight was spending time with Santa himself!

2. On December 11th, she went to see the Living Christmas Tree at Walnut Street Baptist Church. Last year she was not able to go because she could not be in crowds yet, so she had made me PROMISE that I would take her this year. We all had a great time...Thank you to the Thurman Family!

3. On December 18th, we all went to Uncle Carl and Aunt Sylvia's house in Richmond, KY for a family Christmas celebration. It was wonderful to be able to make it this year and play with some of her cousins.

4. On December 20th, the entire family went Christmas caroling with the Resch's family and friends to the oncology unit at Baptist Hospital East. Brooke really enjoyed herself that night and then we returned to the Resch's for a little holiday cheer and fellowship afterward.

4. On Christmas Eve, we went to church with Mom B and Grandad and the whole family participated in the "Paper Bag" Christmas. Brooke chose to be a shepard, and I must say she did a beautiful job. Morgan and Kristen were both angels, Austin and Dad were kings, and somehow Mom ended up being a cow (no comment please). After church, we ended the night at Mom B and Grandad's house with a wonderful dinner and presents.

5. Christmas Day, Brooke was delighted to find a few of her favorite things under the tree. The highlights were a few new board games, a McDonald's drive thru window, and a few electronic games too. By mid-afternoon, the Clemons side of the family arrived at our house and we had nearly forty people for dinner. It was great to have everyone together! Most of the sixteen children put on a Nativity play after dinner and Brooke chose to be Mary. Unfortunately, our newest addition to the family (Baby Jill...3 months) was taking a nap and not available to play the part of Jesus. No problem for Brooke, she just used Kristen's Dora the Explorer doll. It certainly was not a Broadway production, but it was so very sweet!

6. On December 27th, Uncle Pat, Aunt Pam, Megan, Lauren and Bryan came in and stayed thru today. It was great fun having Megan (21), Lauren (17) and Bryan (24) stay with us. Our kids loved to wake them up in the morning. The running joke was, that if you slept too long (after noon), then the kids would get out the pots and pans and start your day for you...poor Lauren! Then on the 29th, Uncle Duane, Aunt Sandy, Madison, Makenna, and Spencer joined us to complete our "Tracy Family Christmas" at Mom B and Grandad's house. The kids had a lot of fun eating a big dinner, opening presents and playing Treasure Hunt with their cousins.

7. In between all of the scheduled activities, there were many fun things going on at home too...making gingerbread houses with the Merrifield family, making gumdrop Christmas trees, playing game after game, going to see The Chronicles of Narnia, baking cookies together and even a little basketball too. Morgan's team won the Lourdes Christmas tournament tonight.

Christmas 2005 was far from perfect, but it was filled with so many special events and wonderful times with family and friends. We are very grateful for our time together and we trust that God will bless your family during this holiday season and in 2006!

Love,
Bryan and Stephanie

Please continue to check on and encourage our friends who are facing difficult circumstances: Miriam , Hannah , Kyle

Monday, December 5, 2005 10:12 PM CST

Brooke has been moving in "high gear" lately.

On Tuesday of last week, "Aunt" Kelly was able to get complimentary tickets for Brooke to the Opening Night of Annie at the Kentucky Center for the Arts. Annie is Brooke's favorite musical, and certainly played a big part in keeping her spirits high during the toughest days of her treatment. I will always remember the night before Brooke was to be discharged from her transplant, she and I stood on top of her hospital bed and improvised the words to the song, "Tomorrow" with Brooke's nurses. (Hey, it had been a long thirty-seven days!)

As you can imagine, Brooke was thrilled when Aunt Kelly surprised her with the tickets and she was even more excited to be able to invite a friend, Sara Kate, and her mom too. After a nice dinner out we enjoyed every minute of the show. It was priceless listening to Brooke sing along. Following the performance a young lady told us where we could go if Sara Kate and Brooke wanted to get some autographs. Quickly we made our way outside, and as luck would have it, Brooke was able to meet a number of the characters, but the highlight was, of course...meeting Annie played by Marissa O'Donnell (see pictures). It was the perfect ending to a perfect night.

The weekend was filled with the regular routine. Brooke went to a few basketball games, went to church and played with friends. We even managed to get most of our Christmas decorations up too.

Looking forward to Christmas, Brooke's schedule is full of fun things to do...a cookie exchange tomorrow, a Christmas tea, several family get-togethers and Christmas caroling with her Brownie troop. When she received the invitation to go caroling she began jumping up and down saying, "Christmas caroling, Christmas caroling, I can't wait to go Christmas caroling!" And then she stopped jumping, got a confused look on her face and said, "What exactly is Christmas caroling? After a quick explanation, she said, "OK that's what I thought."

On the medical front, Brooke has continued to have a great energy level and go in a million directions. She seems very happy, but she continues to fight a nagging cough again (UGH!). We took her to the pediatrician today and he suggested that we just wait another week and see if she begins to get better on her own. He is hesitant to overtreat her with antibiotics. We are hopeful that Brooke can beat this thing on her own.

Finally, we received an email from Dr. Soni indicating that Brooke's next scan will be in the early part of February. She returns to clinic on December 13th for a checkup and labwork.

Thank you for continuing to keep Brooke, and all the children fighting cancer, in your prayers. We have several friends who are facing the most difficult of circumstances right now and could use your support. Please pray for Miriam , Kyle , Brooke , Hannah and Will . Our hearts are breaking for these families.

Love,
Bryan and Stephanie

Thursday, November 24, 2005 8:58 PM CST

Brooke had a wonderful Thanksgiving!

Yesterday, Dad took the kids to see Grandma and Papa in northern Kentucky for a pre-Thanksgiving visit. They played games, went to see Chicken Little, and ate too much pizza and ice cream...nothing better than getting spoiled by your grandparents over the holidays! WE ARE THANKFUL FOR GRANDPARENTS!

This morning Mom and Dad planned to start the day by going to church at Holy Trinity. We had assumed that everyone would still be asleep after a long day and late night returning from Grandma's house. Much to our surprise, Brooke awoke earlier than usual and proclaimed that she wanted to go to church with us! Quietly the three of us went to church as the other kids slept. It was a wonderful start to the day. WE ARE THANKFUL FOR CHURCH!

When we arrived home, everyone had eaten breakfast and we leisurely got ready to go to Richmond for our Thanksgiving celebration. We spent the day with Greg, Linda, Grandad, Mom B, Paul, Melony, Sean, and Jackson. Our kids had a blast playing Star Wars, cops and robbers, cards, singing, watching football and EATING A FANTASTIC MEAL. It was so nice to just have a "normal" Thanksgiving with family. WE ARE THANKFUL FOR FAMILY!

The past couple of weeks have been fun for Brooke. Her days have been filled with school and after-school activities. Soccer and her cooking class have recently ended, but she is still very involved with choir and Brownies. WE ARE THANKFUL FOR FUN-FILLED DAYS!

Socially, Brooke seems to be doing well too. She is quick to tell us who she played with at recess or who she sat with at lunch. She was invited to three birthday parties in one weekend, and she has not asked Mom or Dad to come to lunch with her in several weeks. It is wonderful to think that she really is adjusting to the school routine with a little help from her friends. WE ARE THANKFUL FOR FRIENDS!

Tonight we continue to be so very thankful for our many blessings, and yet our hearts are heavy for the families that we know who have faced this holiday without a loved one or who are fighting a challenging battle. Please join us in saying a prayer of thanks for Brooke's good health, and also a prayer for those who had an especially difficult day today.

Love,
Bryan and Stephanie

Wednesday, November 2, 2005 9:39 PM CST

THE SCANS ARE ALL CLEAR!!! Once again our prayers have been answered and we are overcome with relief and thankfulness.

Dr. Soni called at 7:20 PM to share the good news. Bryan answered the phone and Dr. Soni in his polite way asked, "Bryan, how are you?" Bryan replied that he was fine, but was more concerned with how Brooke was doing. Dr. Soni matter-of-factly replied, "She is fine. All clear."

After the phone call, Bryan quickly relayed the great news to the rest of the family...we were ALL at basketball tryouts at Holy Trinity. Once Brooke heard the news, she grabbed me by the hand and bounced down the steps to the basketball floor. In an instant she was working on her ball handling...it was beautiful! I would love to think she doesn't worry about these scans too much, but you can see her attitude change in an instant...let there be no doubt, she is relieved too!

Tonight we know we have so much to be thankful for. Since Brooke's relapse this summer, she has had her dreamtrip to Disneyworld, entered the first grade, scored her first soccer goal, sang in the church choir, joined the Brownies, received her own Bible, raised sixty thousand dollars for Kosair, gone trick or treating and much more. Big or small, we are grateful for everything and for every moment with her and all of our children. Honestly we do not know when Brooke's next scan will be, but we know it will be at least two months from now...thoughts of Thanksgiving and Christmas come easier now.

Once again, we would like to thank each of you for your prayers and support. It is such a long road for her, and we are humbled to know how many people love Brooke. Thank you, thank you, thank you for your prayers...we know that they have made a difference!

Love,
Bryan and Stephanie

Saturday, October 29, 2005 3:08 PM CDT

Brooke asked that I update her website with two important pieces of information:

#1. Brooke scored a goal Tuesday in her very last soccer game of the year! I had talked with Brooke about the fact that scoring really didn't matter and that we were so very proud of her for just making the effort to join the team, but there was no denying her excitement after she scored on Tuesday. Her smile was priceless! Then the competitive juices really started flowing and she immediately wanted to know if the score really was four (Blueberries/Us) to one (Them). I tried to explain that we don't keep score, but you know how that works...the kids still want to know.

#2. Brooke will be singing with the choir at church on Sunday at 11:00. Last night before bed, she confessed that she is a little bit nervous, but excited just the same...we are excited too!

Finally, I have one additional update: We just received the paperwork for Brooke's upcoming scan. It is scheduled for Wednesday, November 2nd at 9:30. Brooke will register at 7:30 AM, have a hearing test at 8:00, CT scan of the chest at 9:30, and then a bone density test following the scan.

Please join us in praying for great results! We will update the website as soon as we know anything.

Love,
Bryan and Stephanie

Sunday, October 23, 2005 9:11 PM CDT

In general Brooke is doing well, but she does seem to be picking up all the little bugs that are "going around" at school. (This really is not a surprise given that she hasn't been in a school setting in such a long time.)

Two weeks ago, it was her cough and runny nose that had our attention. More recently, it has been her stomach. When we called the pediatrician about Brooke's symptoms, the nurse was understanding, but not concerned. She said that Brooke was presenting like many other children they had seen and she should be better within the week. As of tonight she does seem to be doing much better.

On Tuesday Brooke went to the clinic. We talked with Monica, the nurse practioner, about some additional follow up testing that is necessary...audiology, bone scan, and thyroid levels. She said that the audiology test and bone scan could be scheduled with her next CT scan in early November. The thyroid levels will be drawn at her next clinic appointment in December. We also discussed the need for Brooke to restart her immunizations (they were all wiped out during her high dose chemo and stem cell rescue).
Then Dr. Soni came into the room to see Brooke. He talked to us about the schedule for her upcoming scans and then told us that he "didn't have anything else to say." Brooke loved that part!

Brooke has continued to enjoy all of her extracurricular activities and she has had quite a following at her soccer games. Two weeks ago Brooke was delighted that Mom B, Grandad, Doug, "Loddie", Ms. Leslie (her wonderful homeschool teacher from last year), Jill and Reece all attended a game. Brooke was so excited that she even threw in a cartwheel DURING the game...don't you just love first graders? This past week Grandma and Papa made a special visit to her soccer game too!

School has also continued to be fun. There has been Pirate Day, Johnny Appleseed Day, and a limo ride to Gattiland for kids who had sold enough magazines for the school's fundraiser. Although school is enjoyable, Brooke has been very serious about completing her homework. Each Monday the teachers send home a folder with the homework for the ENTIRE week. Brooke insists that it must be finished on Monday night and she really prefers to turn it in the next day. Academically, she is doing great...her report card showed all A's in the graded classes and S (satisfactory) in the others!

Finally, Brooke had a very special day in Richmond, KY last Sunday. She received a Bible in memory of her great grandmother, Onalee Tracy ("Gran Gran") during the service at Red House Baptist Church. Each year the church has honored her memory by giving Bibles to each of their first graders and Gran Gran's great grandchildren. Gran Gran had taught first grade in the public schools for 43 years and also taught first grade in Sunday School. She believed in the importance of reading the Bible and passed her love of the Bible to many generations of young children. It was a touching part of the service and the congregation clapped for Brooke when it was mentioned that she had been fighting cancer for nearly two years. Brooke responded in typical fashion, smiling and waving her hand as if to say..."thanks, but that is enough." After church, we completed the day by going to Union City for a Crosby family reunion. Like all reunions, we visited with many people we hadn't seen in years, looked at old pictures, took new pictures and ate waaaaaay too much food. It was a wonderful day!

We will update when we know the exact date of her upcoming scan, but we expect it will be in the first part of November. Please join us in praying for great results!

Love,
Bryan and Stephanie

**Generally I do not include information on other families, but I have a very special prayer request for our friend Miriam (caringbridge.org/in/miriameswine). She was scheduled to begin her transplant on Wednesday, but it was cancelled because they found new lesions in both her lung and sternum. Please visit her website and include Miriam and her entire family in your prayers. You couldn't meet a finer family!

Thursday, October 6, 2005 6:11 PM CDT

This week has had its ups and downs, but everything is going well now.

When Brooke came home from school on Friday her cough was very frequent. Dad called the pediatrician who was nice enough to see her late on Friday afternoon. The doctor commented that he would have expected a sinus infection given that she had had a runny nose for so long, but in actuality it appeared she had bronchitis or a secondary pneumonia. He went on to say that he heard "crackling" in only her right lung...her right lower/middle lobe of her lung to be exact. (UGH! That was exactly the site of her relapse from this summer and that started the wheels turning.) He recommended that we start an antibiotic (Augmentin ES) and notify her oncologist.

When we returned home we paged Dr. Soni with the update and his response was very comforting. He said that he was encouraged by the fact that the pediatrician could hear "crackling." He said if it was something more serious (relapse), we would likely not hear anything...it would more likely be "silent." When I asked if we needed to get a scan to rule out anything more serious, he said, "No, I think we should stay with the original plan and get her next scan in November." He explained that because she has had two clean scans since her relapse with monthly intervals, we can now wait two months for the next one. As we fast forward to tonight, her cough and runny nose are virtually gone. Praise God!

On the social front, Brooke's week has continued to be very fun. Monday she stayed after school for her first cooking class. They made and sampled a smoothie, a peanut butter cookie and Brooke's favorite...a twisted breadstick with dip. Tuesday she stayed after school for choir practice and they are scheduled to make their debut at church on October 30th!

Brooke also had a special visit this week from Patrick Barry who worked in the Childlife department at Kosair. Patrick played outside with Brooke and the other kids in the neighborhood. They played on the swings, played Capture the Flag and ended the night with a few games of Guess Who and Guess Where when it got too dark outside. Brooke had so much fun!

Brooke's next appointment at the clinic is scheduled for Tuesday, October 18th. That appointment should be just a regular check up and bloodwork. We haven't received the orders for her next CT scan yet, but we would expect the scan to take place sometime during the week of November 7th. Thanks in advance for your prayers!

Love,
Bryan and Stephanie

Tuesday, September 27, 2005 9:29 PM CDT

Bless her heart...Brooke's social life has continued to flourish!

After school today, Brooke attended her first choir practice. I arrived a little early to pick her up and was delighted to see her intensely trying to learn the hand motions that accompany the songs and sing along. She said she had a lot of fun and we celebrated her first choir practice with a Cheesburger Happy Meal at McDonalds.

Brooke's soccer clinic/scrimmage at Holy Trinity is still going strong too. Each Tuesday night the first grade girls (Brooke's age) participate in several 3 on 3 scrimmages for forty five minutes, and then they join the second graders for a forty five minute clinic. The whole idea is really neat...only six girls on the field means lots of "action" and the key is there is no goalie for either team which usually means lots of goals. Tonight Brooke showed some definite improvement in a couple of areas...and I don't mean in her soccer technique...I wouldn't know. This week when I asked her if she was ready to come out of the game, she told me "no"...which is a first! Then to top that...later in the game she asked me if she could go back into the game...another first! I cannot begin to explain how wonderful that was to hear. Little by little, she is regaining her endurance and her confidence. As of tonight, she still has not scored a goal, but she did have a shot that was just inches away. She talked about it all the way home and couldn't wait to tell Daddy tonight on the phone...he is out of town with work this week.

School seems to be going better too. Academically, she really hasn't had any trouble. She has terrific and loving teachers and she is adjusting well. She said that P.E. was a little hard at first. They started with some tumbling that she was not particularly comfortable doing, but now they have moved on to game playing which is perfect for Brooke. Lunchtime and recess sound better too...each day she proudly tells us who she sat with or played with during the day.

Thursday after school, she is going to a bowling birthday party for one of her classmates. She has already invited another soccer friend over to our house next week, and if that is not enough, she signed up for a weekly cooking class that meets after school beginning on Monday. We are hopeful that she will be cooking dinner for us soon!

Sometimes I wonder if we need to reign her in a little, but then I remember how much she has been through. These activities remind her of all that she CAN do, and has been so therapuetic for her and for us. I will never again take for granted her ability to attend school, choir, soccer, Brownies, cooking class or anything else she may choose to do. We don't have any musicians in the house, and now she is talking about guitar lessons...who knows?

Despite all of the fun, Brooke has been fighting some symptoms that we are watching very closely. She has had a runny nose for about three weeks, a pretty bad cough for ten days, and she even had a fever last Tuesday morning and we kept her home from school. We spoke with her pediatrician and he reassured us that this was "going around". He called in a prescription for her to replace the Dimetapp that we were giving her. As of tonight, we are thankful that her runny nose and cough are much improved and she has not had any more fevers. Additionally, her appetite is good which helps everyone feel better. As all the caringbridge families know, it is impossible for your child to "just have a cold" without all of the concern for what it might mean. We are encouraged by Brooke's improvement and trying to remain focused on all the fun she is having.

Once again, we remain thankful for your support. All we could ask for is that you continue to keep Brooke in your prayers. Yes, she has weathered the chemotherapy, radiation and surgeries and we are so unbelievably grateful...but staying healthy without the treatment is the name of the game. Please pray for Brooke's continued good health and for every family fighting cancer!

Love,
Bryan and Stephanie

Friday, September 9, 2005 5:21 PM CDT

Dr. Soni called about 5:15 this afternoon and said, "I don't know what else to tell you, Brooke's scans were all clear."

Last night I reminded Brooke that her scans and annual tests were scheduled for this morning at Kosair. Her first concern was that she was going to miss show and tell and it was "her turn" to bring something. When I explained that her teacher had emailed me to say that she could bring her item in next week, she seemed to feel better. You have to love first graders!

Then it was pretty clear from the look on her face that her mind had shifted to thinking about "THE SCAN." Last month after we received the "all clear" phone call from Dr. Soni, Brooke admitted that she had been very scared all day. I asked her if she was scared about today's scan and she didn't answer. I tried to remind her of how well she had been feeling this month, how strong she had been and that I felt sure that everything would be just fine. Brooke responded, "Yeah and the picture (scan) will just prove that!" Again and again Brooke's spirits have lifted ours during the most anxious of times.

Brooke really has shown much improvement over the past couple of months and if today's results had been different we all would have been shocked...but as all the caringbridge families know firsthand, you never rest until the results are final. Dr. Soni said that he would need to think about when the next scan for Brooke will be. We are hopeful that we might spread it out a little now, but we will obviously do whatever he tells us.

Tonight we continue to be grateful for the love, support and prayers that everyone has shared with us. We are grateful for Brooke's health and we are hopeful that every caringbridge child gets the same news..."all clear." Please join us in saying a prayer of thanks for Brooke's results today and please include all of the other children who are fighting too!

Love,
Bryan and Stephanie

Tuesday, September 6, 2005 9:55 PM CDT

We enjoyed a fabulous and beautiful Labor Day weekend.

Friday we all went to Grandma and Papa's house to visit with Bryan's cousin (Marla), her husband (Rich) and their two sons (Zachary and James) who were visiting from North Carolina. It had been a long time since we had seen them and it was nice that we were able to get together for dinner. Brooke's highlight of the night was playing soccer with Marla. Marla was an All-American soccer player at Xavier University and when Brooke heard that...she packed her cleats, shin guards and soccer ball right away! The training session was a little short, but Brooke had a blast!

Saturday Brooke spent a couple of hours at the pool with Kristen and Mom. She ventured to the side of the pool to jump in a few times, and worked on her dog paddle technique and floating on her back. She is a long way from swimming on her own, but at least she showed some interest. When we got home she said she would like to go to church "to get it over with" (sorry Father Chuck) so we rallied quickly and went.

Sunday Brooke spent the entire afternoon with Erika at the pool while the rest of us went to the Merrifield's house to watch the UK-UL football game. The swimmers finally got back around seven o'clock and we picked Brooke up about eight. We thought that after more than four hours at the pool she would be ready to call it a night...not so, she was determined to get back to the Merrifield's house so that she could see Carmen (of course) and Tyler.

Monday Brooke invited three school friends to go to Gattiland with her and she had so much fun. They ate pizza, played games, and won fabulous prizes (not really) and then returned home to play some more. Tag, hide-and-seek, and treasure hunt were the big highlights. After her friends went home and we ate dinner, Kara came over and suggested that we make a lemonade stand to raise money for the Hurricane Katrina victims. All of the kids quickly pitched in and they raised $191.47 in just about ninety minutes! (I am beginning to think that Brooke has a career in fundraising ahead of her after this and the golf outing.) The key, however, was the marketing genius...Austin. He suggested that they take the lemonade sign up to the end of the road where there is more traffic and wave the cars in. Just picture two or three kids (and Dad) at the end of the road with the lemonade sign and Kristen or Brooke with the UK pom-poms from Mom B and Grandad's trip to the football game. It was a wonderful way to end the night and the kids were so pleased to help.

Today Brooke told us that school "went better." The usual tough spots are lunch and recess, but after spending the day at Gattiland with her new friends...things went a little smoother. One friend even wanted to hold Brooke's hand on the way to recess! Choir practice did not start this Tuesday, but is scheduled to begin in a couple of weeks. However, she did have her first soccer clinic and srimmage tonight. During the scrimmage, she got winded pretty quickly...but she pushed through it and played her allotted minutes. It is hard to believe how far she has come...proud parents maybe, but tonight was very special to watch.

Friday is the big day. Brooke will register at Kosair at 7:00 AM for her full body CT scan and then several tests (EKG, pulmonary function, hearing etc.) that are necessary as follow up to her transplant one year ago. PLEASE JOIN US IN PRAYING FOR GREAT RESULTS!

Love,
Bryan and Stephanie

Wednesday, August 31, 2005 9:29 PM CDT

Brooke is still doing very well.

Academically, Brooke is doing fine and she tells us that school is "easy" so far. Her favorite day of the week is Monday because it is her resource day. Resource day means that the students attend only the special classes like art, music, computer, PE, spanish and library all day. Translated by Brooke that means no "real" work. She also thinks it is fun because she doesn't have to wear her regular school uniform, but gets to wear gym shorts and a t-shirt instead. (She is a little bummed that this Monday is Labor Day and there is no school.)

Socially, she is doing her best and trying everything. She wanted me to sign her up for the school soccer team. It sounded like a great idea until she also explained that I needed to volunteer to coach her team. I tried to tell her that I don't know anything about soccer, but she clarified that the coaches didn't need to have any experience...the sign-up sheet said so...it gets really tough when they learn how to read.

Today she brought home the sign-up sheet for choir. They practice on Tuesday afternoon right after school. She said she would like to be in both the choir that sings at school and at church. One of my most vivid memories when Brooke was getting chemo last year was when she was in the hospital for a five-day stay. She was watching a christian video from her preschool teacher and singing along..."God is so good to me." As you can imagine, we are very eager to hear her debut in church this time!

Brooke does say that the hardest part of her school day is recess. Most of the kids know each other from last year and she is having a little bit of a hard time breaking in. Today I met her for lunch and then they go out to recess... there were a few tears, but she will be fine. Tonight, I suggested that maybe we should invite a few girls over to play and get to know them better so that might help her at recess. Brooke replied that she had ALREADY asked a few friends and they REALLY want to come, but they have to ask their Mom first. She is always a step ahead of me.

Tomorrow, right after school we are all going to Kosair to present the check to the Children's Hospital Foundation from Brooke's golf outing, "Brooke's 18 Holes for Hope." She is excited about making her donation and even more excited about the renovations that should follow. We believe that the funds (around $60,000) will be used to install new TV/DVD players in every oncology room, to buy ten new IV pumps, and to redecorate the playroom. Once again, thank you to all who helped us make that such a memorable day.

Finally, please begin praying for Brooke's upcoming scan which is scheduled for next Friday, September 9th.

Love,
Bryan and Stephanie

Tuesday, August 23, 2005 9:04 PM CDT

Brooke continues to do very well and she amazes us more and more each day...and so do others.

Saturday we received a phone call from a stranger who said "I was recently on a Southwest flight a few days ago..." (I was already thinking one of two things: one of our kids did something bad or it was going to be a survey that I was not interested in taking.) Thankfully, I was wrong on both. He went on to say that he had found an autograph book on the plane that belonged to someone in our family. Well it was Brooke's most prized souvenier from the trip...the book she had used to collect signatures from EVERY character at Disney, MGM and Give Kids the World. This total stranger who we now know to be "Charlie" then offered to return it to us. I offered to pick it up, meet him, or pay the postage for him to mail it to us, but Charlie would hear nothing of it, he insisted on delivering it to us, at our home, that same day. He stayed only long enough to hand the book in to Brooke and then left with the handmade "Thank You" note that Brooke had made for him. It meant the world to Brooke (and to us) and showed us once again just how many terrific people are out there!

Brooke is enjoying school more and more each day. Sunday, a little girl from her class (Mary Catherine) called and asked her to come over to play. Can you imagine how excited Brooke was? A new friend, in a new school is worth their weight in gold. To make a good day even better, they even went to Puzzles FunDome for a couple of hours before returning home in time for dinner. It was great to see her out on her own, with her confidence returning more each day. Thank you Mary Catherine for making Brooke's day...and ours!

Finally, Brooke had her first office visit today following her surgery. We met with Monica (NP) who:

1. Reviewed her CBC...everything was in the normal range. Her hemoglobin was 13.9, her WBC were 7.0 and her platelets 179,000. Monica said, it looked "awesome."

2. Discussed Brooke's immunizations schedule...generally transplant patients have to be re-immunized on all of their childhood shots because the high doses of chemo usually wipe out all of that immunity. We will know for sure in about one week when the test results are back, and then Brooke will start over on the immunizations that she needs (MMR, DTP etc.)

3. Discussed the need for many follow-up tests (hearing, vision, pulmonary function etc.) because Brooke is now approaching one year post transplant. Monica said that she will try to schedule those tests with her next CT scan which will likely be around Labor Day.

Then Dr. Soni met with Brooke. He stated again that he was pleased with the results of Brooke's last CT scan and we will just have to "wait and see." There really wasn't much left to talk about. Brooke enjoyed meeting with Dr. Soni and telling him a little bit about her dreamtrip to Orlando. As a child, or an adult, you have to put your trust in someone, and Brooke REALLY trusts him. I asked her as we left the office if she liked Dr. Soni and she replied confidently, "Yeah, I love him."

We feel very fortunate to have so many people caring for Brooke...strangers like "Charlie", little friends like Mary Catherine, Dr. Soni and our own friends and family. Please continue to pray for Brooke's scans to remain clear.

Love,
Bryan and Stephanie

Thursday, August 18, 2005 8:34 PM CDT

After a busy start to our vacation, the pace slowed for the last couple of days.

On Tuesday morning, Bryan went to pick up Mom B and Grandad from Aunt Pam and brought them back to Give Kids the World. Together we all ventured to Sea World where all of the kids immediately went to feed the dolphins. It was amazing to see the dolphins up close, feed them and have the chance to touch them! From there, Morgan and Austin had to try out Kracken, the huge roller coaster that turned upside down seven times and goes about 65 miles per hour. They also rode Journey to Atlantis, a water ride that has a 60 foot drop almost straight down. Then we all met for the Shamu Adventure show and watched the killer whales in action. Brooke loved seeing them jump out of the water and splash the audience, but she was beginning to tire from the heat and was almost ready to head home...it really was unbearably hot. However, before Brooke was totally ready to call it a day, she insisted on spending some of "her money" on a caricature sketch of herself in the Happy Harbor area. Then when Kristen was sad about not having her picture drawn, Brooke insisted on paying for hers too...it was very sweet! Once the pictures were finished, we all moved quickly to the van and back to Give Kids the World. The mayor of GKTW (a rabbit in costume) was having a cookout by the pool and the kids enjoyed dancing at the theatre, playing games poolside and eating the Dippin Dots ice cream. We ended the day refreshed by our late night swim and everyone slept very soundly.

On Wednesday, Brooke was very specific about her plans for the day. She wanted to go back to MGM and see the Lights, Motors, Action Stunt Show, ride the Rock n Roll Roller Coaster again and see the Fantasmic night show. But to start her day...she wanted to "take it easy" by the pool. However, Morgan and Austin still wanted to do more and they convinced Dad and Grandad to take them to Wet n Wild waterpark. They loved the Disco H20 ride, but their only complaint was that they had to wait in line thirty minutes for a thirty second ride. (All week they had been spoiled by Brooke's fast pass button, but they didn't have one at the waterpark!) When they returned, everyone quickly changed into dry clothes and we made our way to MGM to finish the vacation Brooke's way. Thankfully, the weather cooperated and she was able to do everything she set out to do...she even rode the Rock n Roll Roller Coaster twice and agreed to try the Tower of Terror, but unfortunately the rides closed at 10 PM and we were just a little late getting there. Brooke was getting very brave, by the end of the trip!

Check out time on Thursday was 11 AM and we packed our bags and made one final tour of the grounds...stopped in the Castle of Miracles to see the "Brooke Ann" star that is now on the ceiling, played a few games in the arcade, took a quick train ride and finished with lunch and ice cream before heading for the airport. Our flight out of Orlando was a few minutes delayed, but we arrived back in Louisville before 5 PM, where a representative of the Dreamfactory was waiting with yet another gift basket stuffed with treats and a "Welcome Home" sign. Our driver, Vern, was patiently waiting for our arrival and he drove us home...yes, we were spoiled from start to finish! Once we arrived home, we had to switch gears completely to get the kids ready for school today. Thankfully, we had their backpacks/school supplies ready, but getting them to bed on time was a bit tricky following vacation.

Today's first day of school went great. Brooke knew only one preschool friend (Sam) in her class, but she did very well. This morning she awoke without complaint at 6:50 AM, dressed herself with Morgan, came downstairs to eat her breakfast and was the first one out the door. Once we arrived at school, she was greeted in the cafeteria by her teacher (Mrs. Sharp), the counselor (Mrs. Siegel), and Father Chuck...who wanted to know all about her vacation to Disney! Then after a quick visit with Mom in the classroom it was clear that she felt comfortable in her surroundings and she asked me to meet her back at school for lunch. At lunch, I enjoyed listening to all of the stories from the morning's activities and how "easy" the work is (thanks to Ms. Leslie!) and to the jokes that her classmates were telling. Then from lunch they moved outside for recess and Mom returned to work. After a very long school day, Brooke suprised us with a great energy level tonight, and most importantly she said that on a scale of one to ten, her first day of school was a TEN!

We continue to be so grateful for Brooke's progress and while we cannot be certain of the future, we know that Brooke has two of the things she wanted most...her dreamtrip and a chance to go to school at Holy Trinity. Please join us in thanking God for such a wonderful day and for such a wonderful daughter!

Love,
Bryan and Stephanie

Sunday, August 14, 2005 9:53 PM CDT

The fun at Give Kids the World continues!

On Saturday, we decided to enjoy some of the facilities that surround us here. It is hard to explain everything that is available:
1)The Gingerbread House serves breakfast and dinner and the tables and chairs are "kid-size."
2)The Ice Cream Palace is open from 7:30 AM until 9:30 PM and serves ice cream all day and lunch too (everyone insists that you have ice cream at least one day for breakfast!)
3)The Castle of Miracles is open each day from 8 AM until 9PM and is where you meet the characters in the morning or Santa at night. There are dress up clothes for the kids, the ceiling is filled with stars with each of the kids names on them, each child makes a Magic Dream Pillow here, and most importantly, for Brooke, the CAROUSEL is right outside.
4)The Amberville Train Station is Austin's favorite..arcade games, ping pong, a train room, and Dino's Putt Putt too.
5)Two pools are on site and the larger one also has a theatre and a water works section.

Saturday was family day...after breakfast Saturday morning the kids wanted to go to the pool and we met Bryan's cousin, Mark, and his wife (Kim) and their children (Mallory and Mitchell) who came to visit from Tampa. Aunt Pam also came from Orlando to pick up Mom B and Grandad for a few days so they could visit with her family. After some fun at the pool and a little fishing, we went with Mark's family to MGM. We got off to a late start at MGM, but Brooke still had so much fun. She especially loved the 3-D Muppet show and the Rock-n-Roll Roller Coaster, and Morgan and Austin are still talking about the Tower of Terror. Unfortunately, the weather did not cooperate and we were not able to see the Fantasmic lazer show. There was no rain, but they cancelled the show because of some unbelievable lightning. Brooke didn't let that stop her though...we hustled out of the park and still made it back to the Ice Cream Palace for a late night treat with the cousins. It was a wonderful day and Brooke loved having Mallory and Mitchell here to share in the fun!

Today, we all slept in, ate a late breakfast and then made it to Universal. Other guests at GKTW had told us that the staff at Universal is especially nice to GKTW children and they were right. Because Brooke is on her Dreamtrip she wears a special pin on her shirt that identifies her, and the staff at each of the parks allows her (and her family) to advance to the front of the line. The staff at Universal was outstanding and went out of their way to treat her like royalty. We started at the Islands of Adventure...Brooke and Kristen loved getting autographs and seeing all of the characters, and Morgan and Austin rode the Hulk roller coaster three times! Later in the afternoon, we switched to Universal Studios and Brooke continued on her search for more characters and autographs. Quickly, one of the staff members took her backstage where she was able to meet Dora, Angelica, Chuckie and Jimmie Neutron. Then they instructed Brooke how to get to Spongebob, Shrek and Donkey before they ended their day. After all the autographs, everyone enjoyed the E.T. ride, Fear Factor and Shrek 4-D together.

We can't believe how nice the trip has been so far. The village and staff are wonderful, the tickets to the parks are very generous, being able to move up in line has allowed us to do so much more than we ever would have been able to do, and Brooke has been a trooper. Her energy level has been as good as anyone elses, and most importantly...it does seem that she is living a dream and we feel very blessed to be here...all of us, together.

Love,
Bryan and Stephanie

Friday, August 12, 2005 10:28 PM CDT

The start to Brooke's dreamtrip has been remarkable!

Thursday morning the driver arrived promptly at 8:00 AM to take us to the airport. When we arrived at the Louisville airport a representative of the Dreamfactory was waiting for Brooke to give her a bag filled with all the essentials for travel...a coloring book, a box of crayons, a Barbie doll, snacks and much more. Brooke loved the flight on Southwest and the flight attendants made sure that she (and the other kids) each had a chance to sit in the pilot's seat after we landed in Orlando. As we moved to the baggage claim, there was a representative of Give Kids the World (GKTW) waiting to escort us to pick up our bags and pick up our rental van...with Mom B and Grandad in tow, it was nice that it was a GRAND Caravan...we actually all fit!

From the airport we made our way quickly to the GKTW village. It was everything we had hoped for and more. First and foremost, the staff is wonderful. (Someone told us that there are ninety people who are paid staff and THREE THOUSAND volunteers.) The kids were immediately greeted and each given two t-shirts and a stuffed animal before we even sat down! After a brief introduction in the lobby, the kids were off to the Arcade with Mom B and Grandad while we checked in our room. After we unpacked, we went to the Castle of Miracles to meet Santa because Thursday night is Christmas at GKTW! And what Christmas would be complete without snow...and it did snow right on schedule at 6:45 and 8:00 PM. Following a quick dinner in the Gingerbread House, Brooke rode the carousel at least ten times in a row, she took a carriage ride with all the kids, and then we all went to the pool for a late-night swim. It really was an incredible start to our vacation.

Today was great. Dad, Grandad and Austin awoke early to try out the fishing in the Happy Harbour Pond. Then they met the rest of us for breakfast with Barney, BJ and Baby Bop...and oh was Kristen excited (and scared!) Brooke wouldn't admit it, but she loved seeing them too. After breakfast and a few more carousel rides, we made our way to the Magic Kingdom. With the GKTW badge that they provided Brooke, we were able to pick up a complimentary stroller for Brooke and Kristen and ride every ride with a Fast Pass! The day went pretty smoothly and Brooke was able to enjoy so many of the rides. Some of her favorites were: Buzz Lightyear (she rode it three times), the Indy Speedway, It's a Small World, and the Dumbo ride. The highlight of the day for Brooke, however, was collecting autographs from the characters. As we were leaving Magic Kingdom, she spotted a couple of characters that she had missed during the day, and she was determined to get those last-minute autographs...it was really cute. Tonight at GKTW, we ordered a pizza for dinner, played in the arcade, checked out the movie theatre, made a pillow with some of the staff, and completed the night at the Ice Cream Palace.

Brooke is having a blast and we are too!

Love,
Bryan, Stephanie and Brooke

Wednesday, August 10, 2005 11:14 AM CDT

On the heals of Brooke's clean lung scan, we raced to West Virginia for a wonderful baseball weekend.

After winning the 9-10 year old State Tournament, Austin's team qualified for the first-ever Regional Tournament for this age division. The opening ceremonies were very nice and the "first pitch" was even sent to Williamsport, PA to the Little League Hall of Fame! The St. Matthews team did very well defeating West Virginia (8-3) on Saturday, Tennessee (3-1) on Sunday and Indiana (5-4) on Monday. Unfortunately, we faced an awesome team from Georgia last night and lost in the semifinals to finish third in the region. The whole experience was incredible...the games were broadcast on the internet, they videotaped the games with live commentary, the stadium was very nice, and most importantly we were ALL together with both sets of grandparents having a wonderful time with great families who have supported us along the way.

The highlights for Brooke were playing in the pool day and night (sometimes even until midnight), going to Wave Fun Waterpark and sliding down the big slides and playing putt putt, and having her hair done by Mrs. Smith.

Today we are on our way home from West Virginia, because we were able to make some final date changes to our plan for Brooke's dreamtrip to Disneyworld...we couldn't have "planned" St. Matthew's baseball success and Donna, the coordinator from the Dreamfactory, was a huge help to us. She made it possible for us to share two "once-in-a-lifetime" experiences together as a family with some quick schedule changes.

Now we will leave first thing in the morning and should arrive in Orlando around noon. We will stay at Give Kids the World Village until Monday (15th) and then relocate to a Disney Hotel until we fly home on the 17th. The only catch to the plan is that Morgan, Austin and BROOKE will miss their first day of school on the 17th. As you can imagine, they are not too disappointed...we just ran out of summer before we ran out of fun!

Love,
Bryan and Stephanie

Thursday, August 4, 2005 10:22 PM CDT

The phone call came from Dr. Soni at 9:50 PM..."Brooke is fine. The area in right lung that was operated on is healing nicely. Enjoy your trip." AMEN and AMEN!

I can't begin to explain the emotions we have felt this week. Aside from the obvious anxiety over the results of the scan and what that would mean for Brooke's health, so many plans hung in the balance of today's scan...Austin's baseball trip (which really is HIS dreamtrip), Brooke's dreamtrip to Disney, and ultimately what Brooke wants the most...a chance to go back to school. It seems so funny to be so thankful for "just" the chance to go on vacation together or to go to school. (Bryan and I had even discussed whether we "could have fun" in Disney if the scan was not clean today.) We are also so thankful that Brooke will have the chance to enter first grade at Holy Trinity with her sister and brother. All week, the kids have talked about the need for school supplies and uniforms and we have purchased it all...but it was so difficult doing the same for Brooke not knowing if she would get to go or not. I promise, we will NEVER take these things for granted again.

Austin is leaving for West Virginia tomorrow for his Regional baseball tournament. He is so excited and he even laid out his clothes tonight after practice. We all plan to join him on Saturday night in time for his first game. We will stay in West Virginia until Monday night and then win or lose, we will travel back to Louisville, and leave Tuesday morning for Brooke's dreamtrip to Disneyworld!

To each of our family, friends (especially Laura and Julie tonight), and the caringbridge families who have checked on Brooke today, and prayed for her ...a most heartfelt "THANK YOU" from the Clemons' family! We love you all...

Love,
Bryan and Stephanie

Saturday, July 30, 2005 6:22 PM CDT

The last couple of weeks have been incredible for our family!

On Monday, July 18th we hosted Brooke's 18 Holes for Hope. We were completely overwhelmed by the outpouring of love and support for our cause. We had set an original goal of raising ten thousand dollars for the pediatric oncology unit...and now we believe that Brooke actually raised over SIXTY thousand! We estimated that on Monday we had over 400 people participate by either golfing or attending the silent auction and many others who contributed financially but were not able to attend. Brooke had a wonderful day and loved seeing everyone that joined us. She would tell you that one highlight of the day was riding on the golf cart with Patrick, Erika and Carmen to distribute gifts to the golfers. We could not begin to say thank you to all who helped or contributed in some way to make the day a success! It was a small way that our family could try to give back to the wonderful people at Kosair who have helped us during the past eighteen months. Brooke plans to purchase new televisions and DVD players for every room, some IV pumps and redecorate the playroom on 7West. We are thrilled to think that her contribution will make a difference to the children fighting cancer in the Louisville area. To those who contributed...THANK YOU...we had such an awesome day and we were lifted up by the love of our family, friends, and neighbors!

During all the excitement with Brooke's fundraiser, Morgan's 12 and under softball team won the State Tournament and Austin's 10 and under baseball team won the State Tournament too! Morgan's team progressed to Indianapolis, IN this weekend for the Regional Tournament, but were eliminated today by a really great team from Indiana. Austin's team is scheduled to play in West Virginia starting Saturday, August 6th. We are so proud of both kids teams...they have had great seasons and enjoyed great success.

Despite all of the excitement over the golf outing and sports, we are again preoccupied with the reality of Brooke's situation. She will have a CT scan on Thursday, August 4th and the results will dictate our next steps. We are scheduled to leave on her Dream Trip to Disneyworld on Tuesday, August 9th. We will keep you posted on the results as soon as we know.

Please pray for clear results for Brooke...and for our friend, Miriam (www.caringbridge.org/in/miriameswine), who also will be getting scan results this week.

Love,
Bryan and Stephanie

Thursday, July 14, 2005 11:25 PM CDT

DAY 312: After multiple consultations with local and regional experts, we have made the only decision that makes sense to us at this point and time. We have decided to take a "wait and watch" approach to Brooke's future treatment.

If you talked to ten physicians about Brooke's case:

*THREE would say, wait and watch
*SIX would say, start chemotherapy, but with little agreement on what agents to use
*ONE would say, start chemotherapy and go for a second stem cell transplant.

The issues that led us to this decision are:

1. Brooke has no measurable disease at this time. Wilms tumor is a solid tumor and there are no blood markers to know if it is there or not. You either see it, or you don't... and if you can't see it, you can't see it respond to therapy (chemotherapy) either. We would have no way to know if the medicine was even working.

2. There was only one lesion in her right lung and Dr. Nagaraj completely removed it. Although it is a bit difficult to feel lucky right now, there is a chance that that was all of the cancer left in Brooke's body. Dr. Dome at St. Jude's has four long term survivors who relapsed with a single lesion in their lung, had surgery, and required no further treatment.

3. The treatment options that are available show only fair
success (~30 percent), so we feel compelled to take the least toxic approach...Brooke has had so much chemotherapy.

4. Wait and watch does not mean giving up. We will scan Brooke's lungs every month to monitor her. If another lesion should appear, we will move rapidly down our treatment plan. As unprepared and shocked as we were this time, we are more prepared now. With that decision behind us, we are trying not to look back, but fill Brooke's days with as much joy as possible.

Brooke enrolled in Bible School this week at her old preschool. She was a little nervous about returning to school for the first time in eighteeen months, but she quickly adapted to her friends and wonderful teachers! The first day she wanted Mom to stay with her for awhile in class, but by Wednesday she told me to just drop her off. I have never been so happy to be kicked out of church!

Monday is Brooke's long awaited golf outing. We have organized a fundraiser for the Children's Hospital Foundation called (appropriately), "Brooke's 18 Holes for Hope". We had originally thought it would be great to see if we could get eighteen foursomes out on a Monday for golf, have some fun and raise a little money for the hospital. As of tonight, we have over 150 golfers in two flights, hugely generous silent/live auction items, and a list of volunteers that is unmatched. We are humbled by the response...Brooke even appeared on the noon news Tuesday to promote the event!

For any local readers, if you would like to join us for Brooke's fundraiser, the silent/live auction is from about 5:30 -7:00 at GlenOaks Country Club Clubhouse on Monday, July 18th. Admission is free and we have had some great items donated: three condominiums, a Lasix surgery, artwork, restaurant gift cetificates, tickets to various events, sports collectibles and much more. You can RSVP via email if you can make it. We would love to see you there!

We also made a quick decision to schedule Brooke's dream trip. There was a local child who cancelled for Give Kids the World in Disneyworld for August 9-16th and we were able to take that spot. We will leave on August the 7th to spend two nights with Aunt Pam and then check in on the 9th at Give Kids the World. Brooke is absolutely thrilled.

Her next scan will be scheduled for just before the trip. If it is all clear, we will have the time of our lives, but if there are any complications, the chemo will have to wait until we return. Dear Brooke needs her dreamtrip and we are so thankful to the Dream Factory for making this possible on short notice.

Please continue to keep Brooke in your prayers!

Love,
Bryan and Stephanie

Monday, July 4, 2005 10:29 PM CDT

DAY +301: Brooke has been feeling great and we have had a wonderful week!

Last Monday, Brooke's energy level began to rise. Brooke went with Morgan and Mom to Best Buy to purchase some new movies...Mary Kate and Ashley, Parent Trap, Batman, and Home Alone (can you say spoiled?). Then armed with a Limited Too gift card, Brooke convinced Mom to go across the street to the mall, where she picked out a new bathing suit and walkie talkies.

Tuesday night Brooke went to Big Springs Country Club for her end of the year tee ball party. She received her first trophy...a bobblehead baseball player! The night was especially nice because she was able to see her good friend, Hayden, and enjoy some time in the pool splashing with Dad.

During the day on Wednesday Brooke joined Morgan and Austin in meeting friends at Gattiland. They ate a QUICK LUNCH and then played ALL OF THE GAMES! That night while Morgan raced from a field hockey game to get to softball practice and Austin practiced baseball, Dad took Brooke and Kristen to the pool for an after-dinner swim.

Thursday, Kara spent much of the day playing with Brooke. Brooke invited her to join us for Austin's baseball scrimmage at St. Matthews and they had a great time with the other kids at the field and visting the snack bar.

Friday Brooke attended her first Cincinnati Reds game at Great American Ballpark. It was very important for Brooke to make it to this game because a friend of our family, Chris Burke, was recently added to the Houston Astors starting lineup and she had to see him play against the Reds. Bryan took Morgan and Austin up early to watch batting practice, and Mom and Brooke came just in time for the start of the game...Uncle Doug even provided drop off service close to the door, so Brooke wouldn't have to walk too far (THANKS!) The weather was perfect, we all enjoyed visiting with the Burke family and the Astros won 10-7!

Saturday and Sunday afternoon, Austin's baseball team played. Following Saturday's game we went to the Smith's house for a cookout, swimming and neighborhood fireworks. Brooke had a blast and loved playing with Sara Kate. Sunday the schedule was much the same and after Austin's game we went to the Ellis' house for a cookout too. The highlight of the night for Brooke was playing with Noah...her two-year old "boyfriend."

Today we went to Austin's baseball game again, out to dinner and then back to the house for "Family Movie Night." Then Dad broke out the fireworks and we were joined by the O'Koon, Kleine, and Wilson families outside. The show was not too big, but we didn't have any parking problems or have to fight the crowd.

On a more serious note, we have spent the entire week trying to obtain as many "second opinions" as possible...Sloane Kettering, Riley, Cincinnati, MD Anderson, Stanford, St. Jude's to name a few. We expect to talk with Dr. Soni later in the week after he has had some time to get settled from vacation, digest the information and make a decision regarding Brooke's future treatment. Again the responses are various, but we do feel as though we are getting closer. It just felt better in some ways involving ourselves in the process...after all she is our daughter and while we don't want to be her doctor...the stakes are so much higher for us!

We would ask for your continued prayers for Brooke's health and that we make the right decision for her.

Love,
Bryan and Stephanie

Thursday, June 23, 2005 10:13 PM CDT

DAY +290: Brooke is home and we are so very thankful!

Last night Brooke slept very well and did not awake until Dad arrived around 11:00. Patiently she waited for Dr. Nagaraj to arrive while playing online games on disneychannel.com. She even reluctantly let Mom give her a bath and change her clothes...this is a girl who REALLY wanted to get home. Around 1:30, Dr. Nagaraj stopped by and cleared her to return home. After a visit from Dr. Cheerva and paperwork, she officially left Kosair around 3:45.

When Brooke arrived home, Morgan, Austin and Kristen all hid in the kitchen and jumped out as she walked through the door. They had also decorated the kitchen with balloons and a huge "Welcome Home" sign (thanks Mom B).

Quickly she moved to the family room to relax and watch TV, but soon realized that she was "tired, worn out and pooped." Dad took her to our bedroom and tucked her in for a really great nap. When she awoke later, she asked Dad to take her up to St. Matthews Little League to catch up with Mom and Kristen who were picking up Austin from baseball practice. On the way home she decided that a late night movie party was in order, so we stopped at Target (where else?) to pick up Matilda and a Mary Kate and Ashley DVD.
When we came home from shopping it was bedtime for the other kids and Morgan sat with Brooke and played with her. Brooke had been complaining that her stomach and side hurt...and I am sure that they did...but somehow the attention that Morgan gave her brought laughter and fun. It was a welcome sight to see! Brooke is finishing the night in Mom and Dad's bed watching movies and opening her mail with Morgan.

Once again, we would like to thank each and everyone one of you for your support and prayers. We were blessed with a safe and successful surgery by a wonderful surgeon and care like none other from the nursing staff in the ICU and on 7 West.

We remain hopeful still for greater blessings for Brooke...

Love,
Bryan and Stephanie

Wednesday, June 22, 2005 9:54 PM CDT

DAY +289: Things are looking better for Brooke tonight.

After a restful night's sleep, Brooke improved steadily throughout the day. After two unsuccessful attempts to stop her oxygen, Brooke was able to keep her levels high enough from around 3:15 this afternoon. We remain hopeful that her oxygen levels will stay high enough throughout the night and Dr. Nagaraj will discharge her tomorrow.

Now that the chest tube, catheter and oxygen have been removed, the only other step will be to remove the IV from her hand before discharge. Without being hooked up to anything we expect that Brooke should sleep very well.

We spent much of the day discussing and researching the options for Brooke. Dr. Cheerva was nice enough to type up a summary of the opinions she had received from six other physicians/medical centers. Dr. Bertolone stopped by this afternoon and offered to have a packet of information on Brooke's medical history put together so that we could obtain more second opinions on our own...and we intend to do that. Everyone also seems to be agreeable to waiting until Dr. Soni (Brooke's primary oncologist) returns from India on July 3rd to finalize her treatment plan so that he can have input.

Although the road ahead seems uncertain, we are very happy to think we might go home tomorrow. More than anything else we know that we need to get our feet back on the ground and try to stay focused on crafting the best treatment plan possible for Brooke!

Please continue to pray for Brooke...

Love,
Bryan and Stephanie

Tuesday, June 21, 2005 10:41 PM CDT

DAY +288: Brooke still has a way to go, but we are hopeful that she will be able to go home soon.

To go home, Brooke needs to get rid of her oxygen. However, when we do remove the oxygen from her nose her levels just drop too quickly. She just isn't ready yet.

The good news from today was that she did get her catheter removed by Angie and we are hopeful that that will allow her to get up and walk a little more...which can only help her lungs recover.

Today Brooke had a lot visitors...Stacey, Lindsay, Colleen, Debbie, Doug, Patrick, Kara, Grandad, Morgan, Austin and Kristen but unfortunately she really didn't feel like visiting very much. Tonight she surprised us by inviting Morgan to spend the night, so we just finished watching a Mary Kate and Ashley movie and things are pretty quiet now.

Brooke's recovery from the surgery has been challenging, but we are confident that Brooke will do great. Admist trying to care for her, we are preoccupied with the important question of "Where to go from here?" Today, we met with Dr. Bertolone and Dr. Cheerva following the Tumor Board meeting where they discussed Brooke's case. We had a long discussion with them about our options...anywhere from 1. "Wait and see" to 2. More chemo to 3. More chemo followed by another stem cell transplant. As you can imagine, our minds are bursting at the seams trying to balance the benefits and the risks for our dear Brooke.

Please pray for us to make the decision that is best for her.

Love,
Bryan and Stephanie

Monday, June 20, 2005 10:23 PM CDT

DAY +287: Today had some ups and downs, but Brooke did make it back to a regular room on 7 West tonight!

Brooke awoke at 8:30 and started her day with Spongebob Squarepants on TV. Daddy stopped in to visit in the morning and he got her up in the chair right away before he went back to work. By 11:30, Doug and "Loddie" came to visit, and Mom took a walk while they listened to some books on tape. Brooke really enjoyed her visit, but when she started having a "cough attack" Loddie called for Mom to return to the room. Brooke coughed continuously for at least twenty minutes until she thankfully fell asleep around 1:30...it was easy to see that she was worn out!

Dr. Nagaraj rounded at 2:00 and discontinued Brooke's PCA (pain) pump and moved her over to Tylenol with codeine stating that he would like to see her a little more alert. He also cleared her to return to the regular floor after reviewing her chest x-ray from the morning.

When Brooke woke up at 4:00 we put her in the chair and she complained and complained that her back and stomach hurt...but Dr. Nagaraj had discontinued the pain pump. Brooke's nurse, Kristen, quickly went and brought in some pain meds, but Brooke was still very uncomfortable for awhile. As she squirmed in the chair, she often removed her nasal oxygen and her levels dropped so low that the monitor was going off again and again. At one point, Mom commented that she needed to leave the oxygen tube in her nose because it is "your friend." Brooke replied strongly, "It may be YOUR friend but it is not MY friend!"
Finally, the pain medicine kicked in and Brooke drifted back off to sleep around 6:00.

By 7:00 Brooke awoke and she was like a new person. She was gentle and friendly to everyone who visited. A few of the nurses from 7 West stopped down to see her during the shift change. Nicole came by first and Brooke remembered right away and wanted to know if she and her husband had adopted a baby yet. The great news is that "Grace Elizabeth" should be born in the next few weeks and we all celebrated the wonderful news together. Then Elaine came in for a quick visit and Angie too.

At 8:30 Brooke was transferred to 7 West and she was thrilled to have Angie for her nurse tonight. When Brooke heard who her nurse was going to be she said, "We won't get any sleep tonight, because Angie likes to chat!" Coming back to 7 West unit has certainly brought back some strong emotions and memories...some good/some bad...but we are trying to stay focused on getting Brooke completely well.

The treatment plan discussions formally begin tomorrow as Brooke's case will be reviewed at "Tumor Board." Then we will discuss the options with Dr. Cheerva while we are at Kosair, and then return home to weigh our options.

Please continue to pray for Brooke to heal quickly from her surgery and that we may have clarity in choosing the option that serves Brooke best in both the long and short term.

Love,
Bryan and Stephanie

Sunday, June 19, 2005 10:12 PM CDT

DAY +286: Brooke has shown improvement, but she needed to remain in the ICU today.

The surgery team rounded about 9:45 this morning and awoke Brooke from a sound sleep. By 10:00 they were preparing to remove her chest tube and it was done by 10:30. However, they decided to keep Brooke in the ICU because she was still having some difficulty with her oxygen levels dropping too often and because she was so "wet." ("Wet" means she had taken in so many more IV fluids than she had been able to pee out and they could hear the fluid on her lungs.)

After a quick nap until about 11:00, Brooke had some visitors..."Aunt" Kelly, Mrs. Byrne, Greg and Lisa stopped by following the Male High School reunion breakfast. Then Carmen came about 1:30 and stayed until 4:00. They talked, watched TV and played games on the computer and it really made Brooke's day! Daddy also brought Kristen down today to visit with Brooke for awhile and she said, "I have really missed you Brooke."

By 6:30, Brooke was worn out and took a two hour nap.
During her nap, Morgan sat in the room with Brooke so Mom could visit with Donna just outside the door. The night finished with Grandad checking in on Brooke and watching the late night showing of Mary Kate and Ashley...no popcorn tonight, she tried a little jello instead.

In general, Brooke improved in almost every area...she stayed awake so much more today, she sat up in the chair three times for about four hours total, and really worked hard on her incentive spirometer. We are hopeful that her need for the oxygen will continue to decrease tomorrow and that she will begin to show a little appetite soon too.

Thank you for the guestbook entries...Brooke actually asked me to read them to her tonight before bed. It was a great way to finish the day and tuck her in bed with a few cyber hugs...

Love,
Bryan and Stephanie

Saturday, June 18, 2005 7:18 PM CDT

DAY +285: Brooke has been doing well, but Room 422 was pretty quiet today.

Dr. Nagaraj came to see Brooke early this morning and told us that he would expect:

1. The chest tube to come out tomorrow and then she could transfer back to a regular room. Brooke appears to be on track because the tube is draining less now and she is working pretty hard on her incentive spirometer too.

2. Brooke to come off the oxygen soon. This morning she had some difficulty maintaining her oxygen levels, but tonight we have the oxygen levels turned down pretty low and she is holding her own.

After Dr. Nagaraj visited, Brooke was surprised by a visit from Dr. Silverman (her radiation doctor). Brooke loves him and it brightened her day so much to have him stop by!

Most of the day, Brooke has been resting. The highlight of the day was that Aunt Pam came in from Florida and Uncle Duane from Ohio to visit with Brooke. They even stayed with her this afternoon for Mom, Dad and Morgan to go to church. Tonight she has been a little more alert to watch That's So Raven and The Suite Life of Zach and Cody, but on the whole she doesn't have much to say. For her grand finale...she just sat up in the chair for over an hour and informed us that we need to have a "popcorn party." Morgan is off to the kitchen!

All in all, today was just about what you would expect on the day after surgery, but we are sure looking forward to Brooke feeling just a little better tomorrow.

Love,
Bryan and Stephanie

Friday, June 17, 2005 5:07 PM CDT

DAY +284: According to Dr. Nagaraj, Brooke's surgery went well.

The surgery began around 10:30 AM and we met with Dr. Nagaraj shortly after noon to discuss the results. The bad news is that he was certain that the "lesion" was cancerous and it was a Wilms tumor. He went on to say that it "looked like" the tumor he removed last year which was the more difficult cell type - anaplasia. Nonetheless, the tumor has been sent out and we will get the final pathology report later. The good news was that he removed the entire tumor and that he was not able to find any other lesions by sight or touch. So for tonight, all of the cancer that could be seen by scan or sight is gone...Thanks be to God!

He said that Brooke should recooperate nicely. Tonight she is in the ICU with a chest tube, oxygen, oxygen monitor, EKG and a PCA (pain) pump. She will remain in ICU until the chest tube can be removed which will be based on the amount of drainage from the tube and her chest x-ray. Dr. Nagaraj said he would expect it to be removed on Saturday or more likely Sunday. Then back to a "regular" room, and then home Monday or Tuesday.

The big discussion now will be what to do from here. The doctors all said that Brooke's case will be reviewed at tumor board next week and many local specialists will be able to give their input on next steps. Dr. Cheerva and Dr. Bertolone have also been communicating with many centers and doctors throughout the United States to get their opinions.

But for now, our only focus is on a quick recovery for Brooke. She is doing so well and has showed us again just how tough she can be. At the risk of sounding like a proud mom...I AM SO VERY PROUD OF BROOKE...SHE DID IT AGAIN!

To each of you who prayed for Brooke and Dr. Nagaraj today, we again say, "THANK YOU". You have continued to lift us up during this difficult time and we are so grateful.

Love,
Bryan and Stephanie

Thursday, June 16, 2005 1:08 PM CDT

DAY +283: Brooke's CT scan today showed "no change."

Based on that result, she will report to Kosair at 8:00 AM for a 10:00 AM surgery with Dr. Nagaraj. The plan is to remove the lesion and send it to the lab to confirm exactly what it is. The results from the lab will dictate our next steps.

From our conversations with Dr. Nagaraj (surgeon) and Dr. Maxfield (radiology) it is clear that they believe it is more likely to be a tumor (relapse) than something else at this point. Dr. Nagaraj commented that he would have expected it to be somewhat smaller by now if was not a tumor and Dr. Maxfield said he thinks it is too big to be a granuloma from pneumonia or histoplasmosis.

Following surgery, the lesion will be sent to the lab for testing. If it is cancer, the result is more likely to come back quickly. If it is something else, it will probably take 2-3 days to get that information.

The only good news was that today's scan did not show any new lesions in the lung. Dr. Nagaraj plans to remove the lesion, collapse her lung and feel for any other lesions. We are hopeful that during surgery Dr. Nagaraj will not find anything else.

Our list of prayer requests is longer than usual:

1. Please pray for Dr. Nagaraj and Brooke during surgery tomorrow. We trust that God will guide and protect them both.

2. Then pray that somehow this is not cancer.

3. Finally, if it is cancer, please pray that the doctors can find a way for her to beat it.

We love all of you and thank you for your encouragement and support. As you can imagine, our hearts are breaking, but we continue to remain hopeful and we would ask that you do the same.

Love,
Bryan and Stephanie

Sunday, June 12, 2005 9:30 PM CDT

DAY +279: Brooke has had a wonderful weekend!

Brooke's morning began on Friday with "training camp" in the backyard with Hayden and Austin. They set up the batting tee and tossed for awhile. Then Brooke decided it was time to go to the pool... and Grandad came right over to take them. Off to the pool they went and they stayed until the rain started. Once they came home they broke out the camcorder and made some home movies. Friday night Kara and Savannah came over for a McDonald's picnic in the backyard and the girls told funny stories from their "childhood"...it was really cute.

Saturday was the BIG DAY. Brooke's first stop of the day was the batting cage and then to Morgan's 12:00 softball game. Brooke had a great time watching Morgan's team play and really enjoyed visiting with everyone...especially Papa and Grandma who were in from Northern Kentucky. Before Morgan's game was even over, Brooke was anxious to put on her uniform for her 2:00 game. She looked so cute and it was easy to see that she was very proud of herself. As it got closer to game time, it seemed like Brooke was a little more nervous...but who could blame her? The coaches were terrific and they even started Brooke at pitcher. As fate would have it, the first hit of the game was to Brooke. I would like to tell you she fielded it cleanly, but she did get her body in front of the ball and stopped it. She even managed to throw the ball to first base to who else...HAYDEN, but the ball bounced away and the runner was safe. After she threw the ball to first, she clapped her hand against her glove and she flashed a smile that none of us will forget. Her batting was just as memorable. After several pitches from the coach on her first at bat, Brooke managed to hit the ball and was safe at first. On her second at bat, she hit the FIRST pitch and was also safe at first. As much as Brooke loved hitting the ball, she really enjoyed the fact that she was able to score following both hits too!

Following the game, the coaches gave Brooke the game ball that she has proudly displayed in her room. They also had taken up a collection and purchased a Louisville Slugger bat that each of her teammates had signed for her. What wonderful keepsakes from a wonderful day. And then the highlight for every teeball player...the SNOWCONE after the game!

Saturday afternoon, Brooke made her first appearance at church in a very long time. Father Chuck greeted Brooke as we entered and asked her if she was happy to be able to return to church. Thankfully, Brooke said, "Yes." Following church, we met Linda and John at Qdoba (Brooke's favorite restaurant) for dinner and then back to the house for games...Nickelodeon "Nick Tricks" and Word Rummy were the favorites of the night.

Today was equally eventful. Brooke wanted to go to the Brown Park festival and then to see Madagascar. Following the movie, we all went to Steak and Shake for a quick snack. When we arrived home, she went with Kara to her house to watch Matilda and loved it. Brooke said that the past two days have been "AWESOME."

Brooke is right, the past few days have been awesome, and we plan to enjoy the next few days to the fullest as we prepare for her scan on Thursday. Please pray for the lesion to have gone away or gotten smaller...that would mean that Brooke could avoid surgery on Friday morning. If the results do not go our way and the lesion is the same or larger, then we will have to adjust, and hope and pray that it is not a relapse.

Our next update will follow the CT results on Thursday. Thank you in advance for all of your support and prayers...we have never needed them more!

Love,
Bryan and Stephanie

Thursday, June 9, 2005 10:31 PM CDT

DAY 276: Despite the fact that we are focused on the results of next week's follow up CT scan, Brooke had an absolutely FABULOUS DAY!

Monica, Brooke's nurse practitioner, called this morning with the results of Brooke's labwork from her clinic appointment on Tuesday. When she called I was dropping off a friend of Austin's at swim team practice because he had spent the night. Monica could hear the noise and asked where I was. I explained that I was dropping off kids at the pool. She asked me where Brooke was and I told her that she was at home with Mom B. She said, "Why don't you go back home and get Brooke and let her go swimming too?" I couldn't believe it...amidst all the anxiety over Brooke's CT scan results...she cleared her final immune system hurdle. Her CD4 count skyrocketed from just over 300 last month to over 700 (the goal was 550)! Now Brooke is free to go to the pool, play outside, go to church, go anywhere/anytime WITHOUT HER MASK! We are so thankful.

Brooke wasted little time taking advantage of her new freedom. By the time I returned home, she already had her bathing suit on. She spent almost two hours not just at the pool, but IN the pool. Then she met her friend Erika at Gattiland...they ate lunch, played every game and rode the carousel and bumper cars too. Then she returned home and got ready to go to St. Matthews Little League to watch Morgan play softball. Mom was a little confused on game time and we arrived for Morgan's 7:30 game at 5:30 (I thought the game was at 6:00). No problem for Brooke, she wanted to know where we were going next. Morgan quickly grabbed a few teammates....Mallory, Ashley and Kirsty... and Brooke and I took them out to eat. Then back to the ballpark. Brooke spotted her six year old friend, Hayden, whose sister plays softball with Morgan. Hayden explained that his soft toss baseball team has two more games left. Well guess what? Brooke was assigned to the same soft toss team as Hayden at St. Matthews, so Brooke has two games left in the season too. Her soft toss baseball debut will be this Saturday! Again Brooke wasted little time. Before Morgan's game could begin...Mom, Brooke and Hayden were off to Dick's Sporting Goods to find socks and baseball pants. Then back to the softball field for Morgan's game, home for a bath, and for the grand finale...Hayden is spending the night with Brooke. In the morning, Hayden plans to get Brooke ready for THE BIG GAME. He says that he will "work on her throws and on the batting tee and then she should be ready!"

Brooke said today was "Great!" and we would have to agree! And while we are trying to concentrate on taking things just a little bit at a time (thanks Ms. Leslie), we can't help but ask each one of you to pray for improved scan results next week. She has certainly given us all another opportunity for prayer!

Love,
Bryan and Stephanie

Monday, June 6, 2005 9:51 PM CDT

DAY +273: All things considered, today's visit with Dr. Nagaraj went well. While we still don't have any final answers, we do have a bit more hope...and that hope will have to carry us through until next week.

As soon as Dr. Nagaraj entered the exam room, he greeted Brooke and then asked her to stay with Grandad and he wanted to talk with Mom and Dad. We followed him to his office and he asked us to shut the door. The conversation began with him acknowledging that Brooke's CT scan showed a lesion in her chest. He stated that he however is "not quite convinced that it is a tumor." First, he explained that the location is in her favor. Generally, a relapse occurs right on the edge of the lung...Brooke's lesion is located more in the middle of her right lower lung. Secondly, the lesion has "streaks" on it that does not generally suggest relapse. Both the location and streaks are more likely in a pnemonia, and Brooke has a history of pneumonia from our Spring Break trip to Florida in April. We asked about the size of the lesion because Dr. Soni had told us it was too large for a pneumonia. Dr. Nagaraj said that as a pneumonia heals it can form a granuloma. We have no idea what granuloma means, but based on our conversation it sounds like it may appear like Brooke's lesion. Additionally, he said that for a lesion to grow to 1.5 cm in ten weeks (date since her last clear CT scan) without any other lesions seen, would be unusual. However with all of that said, Dr. Nagaraj also cautioned that he did not want to give us any "false hope."

The plan is to give the lesion a further chance to heal. If it is pneumonia that is healing, it should be smaller or gone by next week. If it is the same size or larger, then she will have surgery right away. Brooke is scheduled to have a follow up CT scan and chest x-ray next week on Thursday, June 16th at 10:00 AM. The results are to be called immediately to Dr. Nagaraj in his office. We should know either way by early afternoon. If it is smaller, we move on, and if not Brooke is already scheduled as Dr. Nagaraj's first surgery case for Friday, June 17th.

If Brooke has surgery, he told us she will be admitted as an outpatient Friday morning and we should expect her to be in the hospital for two to three days. If he has to remove the lesion, he said that her lung function should still be alright, because it is in the lower lobe and her lungs will still grow until she is seven or eight. Following surgery, they will send the lesion for testing to determine exactly what it is. After he listened to Brooke's lung function, he said that she sounded good and that she is a "trooper."

Finally, one cute story on Brooke. Because we have so many more questions than answers and because she had Kara over to spend the night, we decided not to tell her about the appointment with Dr. Nagaraj until this morning...she was just having too much fun. This morning as she stepped out of the bathroom, she said, "Well this is going to be just a lazy day." Right then, I knew it wouldn't be fair to not tell, so I asked her to come into our office so I could talk with her. As we sat down side by side, I said, "I told you about the scan from last week and that there was some fluid in your lung, but I talked with Dr. Soni and he said there is also a teeeney little spot that they see on your lung. But they don't even know what it is...probably because it is so small...so they want us to get another picture and see if it has gone away. But if it is still there, do you think we should get it out, or leave it?" She said, "Get it out." Then I said, "Who should get it out?" and she said, "Dr. Nagaraj." Then I told her that is exactly what Dr. Soni thought we should do too, and we needed to talk with Dr. Nagaraj just in case we need him later and we had an appointment for this afternoon. When I looked down at her hands she had both of her fingers crossed! (Classic Brooke Response) Then I asked her if she had any questions and she said, "No" but I could see that she was upset, so I asked if our conversation made her happy, sad or scared. She just grabbed me around the neck and sobbed. I told her to just let all of those tears out until she felt better. Then she told me that she was OK and I told her that she had a job to do...and she said, "I know, I know...I have to give you the clues if something is bothering me." And I told her she was right, but she also needed "to be tough and remember just how many people love her."

With that, Bryan and I want to say thank you for loving her. Your support and prayers have carried us through the past few days.

Love,
Bryan and Stephanie

Sunday, June 5, 2005 9:05 PM CDT

DAY +272: As you can imagine, this has been the longest five days of our life. However, Brooke continues to flourish.

Friday night, Savannah and Ty came over to play with Brooke for several hours...Kerplunk, Sorry, and the movie Racing Stripes made for a great night for Brooke. Her schedule on Saturday was jam packed. Early in the morning, we went to Target to pick out some DVDs for Ben's birthday party. Then we stopped by McDonald's to see Ronald McDonald who was visiting at Holiday Manor. Then off to Ben's party at Puzzle Fun Dome...all of Ben's DVDs are being donated to Kosair (too sweet!) Then we came home and visited with Cathy and Katie Nagy who dropped off some special mail they had received at their home for Brooke. Inside the note was a very special "God is Love" ring that their friend wanted Brooke to have...she LOVES it and we do too! Then quickly off to Male High School where Brooke (and the whole family to our surprise) was interviewed for the Crusade for Children. When we came home we intended to go to the wedding of Brooke's friend, Erika Lega, who she met during Erika's Childlife internship at Kosair. After we reviewed the invitation more closely, we realized that the wedding was completely outside and that would mean Brooke would have to wear her mask for the entire wedding and reception. We made a last minute decision against going to the wedding, but Brooke rallied and wanted to join Morgan and Austin in collecting for the Crusade for Children with our neighbors, Hal and Kara Clifford. Imagine Brooke wearing her mask on top of a fire truck and then going door to door collecting. Bryan followed in the van to give Brooke breaks from her mask, but her energy never failed. She made it the whole night and we wrapped up our adventure with a stop at Graeter's Ice Cream and then back to the fire station for Pizza, McDonald's, Hide and Go Seek, and a game of Tag. Today Brooke went to Austin's baseball game for a few innings, but it was very hot and she took an early ride home with "Mom B". This afternoon Kara came over to visit after her dance recital and she is spending the night too.

Tomorrow we return to the reality of our situation. Dr. Soni called Thursday to tell us to schedule an appointment with Dr. Nagaraj (surgeon) for tomorrow, Monday. Brooke will be seen by Dr. Nagaraj at 3:20 and we will schedule a tentative surgery date for this week. Dr. Soni explained that if the nodule did not resolve within the week, we did not want to waste any time getting it out. We need to have it removed quickly and sent off to determine if it is indeed a relapse or something different. Then he will have the information he needs to formulate a plan.

Tuesday Brooke was already scheduled for her monthly appointment in the clinic for labwork and certainly sometime Tuesday, Wednesday or Thursday Brooke will have a follow up chest x-ray and a PET scan. I plan to call the clinic in the morning to get the exact schedule. Obviously, we would love for the nodule to simply disappear or shrink when we have the tests run, but the fact that we are meeting with the surgeon tomorrow makes us realize that the doctors are not really expecting that to happen.

PLEASE CONTINUE TO PRAY FOR BROOKE!

Love,
Bryan and Stephanie

Wednesday, June 1, 2005 11:39 PM CDT

DAY +269: It is with a heavy heart that I report that the findings of Brooke's CT scan and chest x-ray show that there is something on the lower lobe of Brooke's right lung.
To all of our caringbridge families, I guess you can add our name to the list of "possible relapes." There have been way too many!

The doctors are suspicious because the nodule is somewhat round in shape and it is 1.5 cm. Dr. Soni said that the size is what worries him the most...if she only had pneumonia "it" wouldn't be that large. Plus, Brooke doesn't act sick. Today she was on the treadmill and tonight she was jumping rope in the basement...go figure. On the plus side, Dr. Soni said that she does have some fluid in her lung and that is NOT generally consistent with relapse. More often, he explained, you see fluid with an infection. Could Brooke have an infection? Really only time will tell.

So where do we go from here? Dr. Soni is going to talk with Dr. Nagaraj (Brooke's pediatric surgeon) who is out of town until he returns to work on Friday. Dr. Soni wants Dr. Nagaraj to look at the CT scan results and discuss with him the next steps. As it stands right now, we must wait. If there is any chance that this is an infection, it would take at least a week to clear. Currently, they have put Brooke on Zithromax (antibiotic) to help clear any infection. Probably, next Wednesday or Thursday they will get another chest x-ray and if by some miracle it is gone or smaller, we can return to life as "normal." If there is no change or, God forbid, it is larger...then Brooke will be off to surgery quickly to get it out. Maybe radiation, maybe lots of things in addition...we simply do not know right now. We expect to hear back from Dr. Soni early next week with more specifics on "the plan" unless he and Dr. Nagaraj speed things up after they meet on Friday.

For tonight our prayer is that the chest x-ray next week will be clear. We have told Brooke about the fluid on her lungs and explained the need for Zithromax, but we haven't taken it any further than that. If we are faced with a relapse, we will shift to praying for it to be limited only to the one lesion they can see on the scan and that Dr. Nagaraj can remove it safely for us. Please continue to pray for Brooke and for her doctors.

Love,
Bryan and Stephanie

Friday, May 27, 2005 10:34 PM CDT

DAY +263: The past couple of weeks have gone very well.

Brooke has continued to show more and more energy each day. Now it is not uncommon to find her playing with friends upstairs in her room or in the basement (there was a time when the steps were too much), running in the house (and that is a joy to see too) or sleeping in her own bed without the need for Mom or even a visit from Mom during the night (she has made it ten nights in a row and counting). It is so fun to watch her confidence grow and her independece return slowly but surely!

Brooke's school year has come to a close. This year we have been blessed with the most wonderful Home Instruction Teacher, Ms. Bev Leslie. From the day she walked into our home, we knew she was special. Academically, Brooke has learned many skills: reading short stories, counting money, reading a calendar, telling time, adding and subtracting, researching different subjects and writing sentences just to name a few. More importantly, Ms. Leslie has taught her how fun it can be to learn in such a loving environment. Brooke's last day of school was Tuesday and as you can imagine it was bittersweet. There is nothing we want more than a healthy Brooke to return to Holy Trinity for school next year, but we will miss our visits with Ms. Leslie twice a week and the opportunity to share a glass of pink lemonade!

Morgan and Austin will finish school on Tuesday and they are excited about the end of the year. They both have done so well and we are very proud of their achievements in school. Morgan's basketball team placed third in the AAU State Tournament last weekend, and she is continuing to play recreational softball and school field hockey too. Austin's school soccer team just had their last game and he also is playing baseball this summer at St. Matthews. Kristen finished preschool a couple of weeks ago and continues to keep everyone in the house "entertained."

Next week is extremely important as Brooke has a scan on Tuesday, May 31st at 12:30. Please join us in praying for the scan to remain clear. We will update as soon as we have the results.

We hope you have a wonderful Memorial Day weekend!

Love,
Bryan and Stephanie

Saturday, May 14, 2005 2:08 PM CDT

DAY 250: Brooke has been doing very well over the past few weeks.

She went to the doctor on Tuesday and her labwork was really looking strong. Her white blood cell count was up to 5.7 (3.6 last month), her hemoglobin was up to 14.2 (from 11.8) and her ANC was 4,100 (from 2,300). All of those lab numbers are considered to be NORMAL...what a nice word to hear!

Last month there was concern about Brooke's weight loss and low nutritional status, but there is NO CONCERN about either of those right now. After being started on Megase, an appetite stimulant, she has gained thirteen pounds in a month...it is safe to say that she even looks a little pudgy now. (I should mention that we have grown to love Brooke in all of her various sizes over the past sixteen months). More importantly, her nutritional status is much improved. Last month her prealbumin test came back at 14.8 and Monica said they like it to be over twenty. Well, the results this month showed her prealbumin to be 39.4! We were very pleased with her nutrition, and equally thankful that they have discontinued the Megase. Now Brooke only takes one medication...Bactrim...on Mondays and Tuesdays.

The only disappointing news was that her CD4 count still has not fully recovered. Her number was 334 this month(from 260 last month) so that means she still needs to wear a mask outside and stay away from crowded areas, like church or the mall, altogether. Monica (NP) said that she thinks it will be another month or two, but nurse Nancy thinks she may get there next month...the goal is 550.

As anxious as we are for Brooke to return to a normal lifestyle and for her number to be over 550, we are a bit preoccupied with Brooke's next scan that will be scheduled for the end of the month. This will be a really important step for Brooke. The German Wilms study, that Dr. Soni based Brooke's treatment plan from, showed that the kids that relapsed following high dose chemotherapy and stem cell rescue, relapsed anywhere from two to eight months following their stem cell rescue (aka transplant). This scan will be NINE MONTHS from Brooke's transplant. If you had a moment to pray for clean scan results, now would be the time.

On a lighter note, Brooke continues to be very active and happy. She traveled with the entire family to Dayton, Ohio for a basketball tournament last weekend, she visited with many of her cousins, she has attended many of the baseball and softball games...wearing her mask, she loves school with Ms. Leslie, and she went to see the matinee showing of movie Kicking and Screaming on Friday. Tomorrow she is going to her friend Erika's sixth birthday party. Despite her restrictions, she really has managed to have a very active social life.

Thanks for continuing to check on Brooke. We are eternally grateful for your support and prayers!

Love,
Bryan and Stephanie

Monday, April 18, 2005 8:36 PM CDT

DAY 224: After an eventful trip to Florida, we returned home safely last Saturday night.

Thankfully, Brooke was already scheduled for a clinic appointment on Tuesday. We were eager to follow up on Brooke's labwork, nutritional status and immune system recovery following her "pneumonia admission" in Orlando. Her labwork was down somewhat, but not too bad. Her white blood cell count was 3.6 (5.1 last month), her hemoglobin was 11.8 (13.3 last month) and her ANC was 2,300 (3,360 last month). We were actually pretty pleased with those results given that she had been sick.

To find out about her nutritional status they ran a prealbumin test, which demonstrates a person's recent nutritional level. Brooke's result was not a surprise...it was low at 14.8. Monica (nurse practioner) said they like it to be over twenty, so they started her back on Megase, an appetite stimulant. She is already eating much better, either because she is recovering from the "pneumonia" or the Megase has already kicked in. We are optimistic that she will be able to regain most of the four pounds she has lost, in the past two months, very quickly.

Now for the best news. The final marker that Brooke's doctors and nurses are watching is her CD4 count. Following transplant that number hovered at 54 or 56 every month and it seemed like it might take a very, very long time to get to the goal of 550. (At 550, Brooke will drop all of her restrictions like wearing a mask in public, and stop taking her two remaining medications...Bactrim and voriconazole). On Thursday, we were delighted to find out that Brooke's CD4 count had risen sharply to 260. Monica said that she believes Brooke's CD4 count will be fully recovered in the next month or two...just in time for summer!

Now that Brooke's CD4 count is in the "middle range" she does have a bit more freedom. Monica said she can now venture out to public places when they tend to not be so busy. Brooke decided to strike very quickly...a Friday matinee movie (Robots), she rode in the St. Matthews Little League parade with her team in the cab of the truck on Saturday morning, she had Sara Kate and her family over to cookout on Saturday night, and she even went with Mom to a baby shower on Sunday that was "co-hosted" by her good friend, Erika.

Brooke truly has shown great improvement in the past week and we continue to be so very thankful. Please continue to pray for Brooke, our friends on 7West at Kosair, the Caringbridge families, and all the families that are fighting cancer.

Love,
Bryan and Stephanie

Saturday, April 9, 2005 10:03 AM CDT

DAY 215: The rest of the vacation has gone according to plan!

Wednesday morning everyone packed up very quickly and we checked in at Nickelodeon Suites. As Dr. Eslin said, Brooke was low on energy, but she was determined to get there. We arrived around 11:00, ate lunch at the hotel, and the room was ready shortly thereafter. Once we had our bags in the room, Brooke was ready for a nap in the Rugrats room and the other kids made a mad dash for the pool. The pool was great...waterslides, hot tubs, sandy area for play and poolside Nickelodeon games complete with green slime! That afternoon, Brooke was awake and we took her to the mall at Nickelodeon and she (and all the kids) had her face
painted. After a quick dinner we went to two shows in the Nick Studio and Brooke had a blast...there was a lot of audience participation and Austin was even called up on stage! (He would want you to know that his team won!)

Thursday we started the day with the character breakfast and we were joined by Spongebob, Patrick, Dora, Boots, Cosmo and Wanda. Brooke had so much fun, and during the "show" she even jumped up and down as she clapped. It was so nice to see her bounce back so quickly! The day was mostly cloudy, but the kids still enjoyed the pool for a couple of hours and Brooke challenged Dad to some Ninetendo and Gameboy games. Then the highlight...a Full House Double
Feature! That afternoon, Brooke was eager to have her face painted again, return to the shows and even take in a little Karaoke.

Friday we started the trip home. We met up with the Smith family in Gainesville and have followed each other up I-75. The kids have enjoyed switching cars...Morgan loves the Smith's Suburban (more room), Austin loves having Will to hang out with and play Nintendo, Brooke is thrilled to have Sara Kate around, and Kristen has been the world's best traveler. Unfortunately, we did have some very bad traffic...it took three hours to go less than thirty miles around Valdosta...but the company has been great! We stopped in Macon last night and the kids ran to the pool, ate some pizza and went to sleep around midnight.

Today we are on the road again, but the Fogle's have called to say that there are more traffic problems ahead in Atlanta. Even if we are delayed though, things aren't too bad because the kids are happy and Brooke is feeling so much better.

Love,
Bryan and Stephanie

Tuesday, April 5, 2005 8:28 PM CDT

DAY 211: Good news! Brooke was discharged today around lunchtime.

Last night, Brooke slept very well and her temperature stayed down. At one point it did go up to 99.7, but the nurse did not recommend giving her any Tylenol. By morning her temperature was down to 98.7 on its own. The oncologist, Dr. Eslin, came in early this morning and said that if she felt well and would drink something, he would discharge her today.

Brooke slept until 10:45, but awoke and was very excited about two things: 1) Getting discharged and 2) Ordering her food on the telephone and having it delivered to the room. She thought that it was "cool" to have her food brought to her door and it "kinda felt like a REAL HOTEL." It was interesting to see how different hospitals do things, but we all missed the wonderful care and wonderful people at Kosair in Louisville.

By 12:00, Brooke had her bath, drank some Diet Coke, ate some nachos and watched her favorite show (Lazytown). The paperwork was done quickly and Dad and the rest of the kids came to pick us up. We went straight back to Pam's house and enjoyed the rest of the afternoon. Brooke spent most of the day watching movies and cartoons with her cousin, Megan, and just taking it easy. The other kids played in the pool...the weather was great! Tonight we completed our visit with a great dinner with Pam, Megan, Bryan, Lauren and Garrett. Everyone had a blast with them this week!

Dr. Eslin said that he still thought it was fine for us to travel to the Nickelodeon Suites, so we plan to head out first thing in the morning. He said Brooke will still be a little low on energy, but just take it easy. It means so much to Brooke that we are able to still go, because as she said emphatically yesterday, "We had it all planned!"

We are also thankful for how well the other kids reacted to Brooke having to be admitted. Their response was just as it should be. It would have been easy for them to be disappointed about having their vacation cut a little short, but we heard not one complaint. We consider ourselves very fortunate to to have kids who know how to adjust to their circumstances...and they have done it time and again!

Love,
Bryan and Stephanie

Monday, April 4, 2005 9:48 PM CDT

DAY 210: Two steps forward and one step back.

Everything has been going so well for Brooke. She had the great news on her scans, her counts are on the rise, she celebrated a wonderful 6th birthday party with many friends and family AND MR. MAGIC (see pictures), Easter was great at Grandma's with all of her cousins...so Mom and Dad decided Wednesday to "rally" and take everyone to Florida for Spring Break. Brooke still cannot be in crowds, so the only way to get to Florida was to drive. Four kids in the van, DVD players, CD players, Nintendo, Gameboy, wireless internet and lots of snacks later we arrived safely in Orlando on Saturday afternoon.

Once again, to avoid too much public exposure we decided to stay at my sister's home for a few days and then move to the Nickelodeon Hotel...they are suppossed to offer many outdoor and indoor activities which would be good for Brooke. It seemed like the perfect plan until last night when Brooke began to complain that she had a headache. At 2AM she called out for Mom and there was no need for a thermometer...she was hot. Then Brooke used the quote of days gone by, "My belly is ouchy" which means get to the toilet quick, she is going to vomit...and she did. At first, her temperature began to drop and we were hopeful that maybe it was just something she ate and that would be the end of it. Unfortunately, that was not the case and before too long her temperature was up to 102.7. We called the pediatric oncologist on call in Louisville at 4AM and he told us to have her admited to Arnold Palmer Children's Hospital.

The procedure for oncology kids from out of town is not that simple. First you have to go to "triage" at Orlando Regional Medical Center and then be admitted to Arnold Palmer if necessary. We arrived with Brooke a little after 5AM and they quickly evaluated her. By then her temperature was 103.5. In a flash, they had her in a room and a nurse came in to start an IV and take blood cultures (ouch). Once the cultures were taken, they were able to give her Tylenol and start fluids. A little later a chest x-ray and they gave her Rocephin and Zithromax. Then things slowed waaaay down. TWELVE HOURS LATER, Brooke was transfered by ambulance to Arnold Palmer.

The bottom line is this...the doctor's have diagnosed Brooke with pneumonia. Her temperature is still up and down, but is trending in the right direction. Her last reading was 98.8! How long she will stay depends on how quickly she rebounds. They can switch her Rocephin to oral from IV at any time. If the blood cultures don't show anything, then she may get out tomorrow or Wedesday. Brooke likes the idea of getting out tomorrow and we do too, but the only thing that really matters is that we take good care of her.

This was not the part of Orlando that we had hoped to see, but we are very happy to see Brooke getting better tonight!

Love,
Bryan and Stephanie

Wednesday, March 16, 2005 9:25 PM CST

DAY 191: After the phone call from Dr. Soni telling us the good news that Brooke's scan was completely clear, we didn't think the day could get any better. The scan was really all we had hoped and prayed for, but at clinic that afternoon the good news continued:

1. All of Brooke's labwork was improved from last month. Her hemoglobin was 13.3 (from 11.1), her white blood cell count was 5.17 (from 2.2) and her platelets were 115,000 (from 75,000). Monica, the nurse practitioner, said everything looked "rock solid." All of her numbers were low normal or very close.

2. The final immune system level (CD4) that they are watching has FINALLY begun to move. The CD4 readings they have taken since transplant have been either 54 or 56 every time (they need to be 550 to be considered normal). At clinic yesterday, they said her CD4 count was 102. Monica and Dr. Soni both predicted that within two or three months she should be fully recovered. Then Brooke will be able to go outside without a mask, return to church, go to the movies...everything! We even discussed her return to school next year for first grade...hard to imagine. Watch out Holy Trinity!

3. Dr. Soni and Monica also discontinued two of her four medications.

Aside from all of the good news, Brooke had a wonderful visit with everyone at clinic. We took along some cookies for the staff and Brooke enjoyed "telling" them that we had baked all day for them (Not true, thanks Plehns Bakery!) She was also delighted to see Dr. Soni again...she hid from him at first in the exam room, but quickly became very talkative. She told him about all of the fun things she had been doing lately with her new freedom. Dr. Soni said he was very happy for her.

Our visit ended as Dr. Soni extended his hand to Brooke and patted her on the head. Then he extended his hand to me. Brooke was in the room, so I had to keep it together, but how do you tell a man "Thank You" for all he has done for Brooke and for our family? We are forever indebted to him and all the staff for giving Brooke back to us.

Brooke will return to clinic in one month for a check up and labwork. Please pray for her continued improvement. We have seen firsthand what God can do.

Love,
Bryan and Stephanie

Tuesday, March 15, 2005 8:47 AM CST

DAY +189: OURS PRAYERS HAVE BEEN ANSWERED AGAIN!

We spoke with Dr. Soni this morning on the phone and he told us all we really needed to hear: "Brooke is good. Everything is clear. Everything is completely clear." As you can imagine, we are so very thankful and relieved.

This afternoon Brooke has an appointment at clinic and we hope to get more information on her labwork, appetite and weight, but for right now we couldn't be any happier!

Thank you for your continued prayers!

Love,
Bryan and Stephanie

Sunday, March 13, 2005 10:11 PM CST

DAY 188: What a wonderful day for Brooke, and what a reality check for us.

Brooke had a day that every kid dreams of. "Loddie" and Doug, our friends down the street, invited Brooke and her friends over to play. Brooke took Kara, Savannah, Erika and Kristen with her. We will never know ALL of the fun they had, but we do know that they sang, danced, made crafts (Mom has a new pair of earrings) and ate everything in sight. Austin and Logan even joined in the fun for awhile and then returned home for some basketball games. Oh, how the kids love Loddie and Doug!

While the kids were down the street playing, Mom, Leisa and Morgan escaped to 4th Street Live for St. Baldrick's. St. Baldrick's is a special event designed to raise money for childhood cancer research. Last year over $3.5 million was raised nationally. This year, Brooke has six people shaving their heads in her honor...today Jake Nagy (age 10) and his MOM (Cathy) and dad (Paul) shaved their heads. Most importantly, Jake raised over $2,000. Way to go Jake! On Thursday, Logan, Joey and Sam will shave their heads at St. Albert the Great School...thank you guys!

The trip to St. Baldrick's today was a reminder once again of how high the stakes are in this game of cancer...we witnessed the determination of so many families who call their children "ANGELS" today. How beautiful it was to see and how scary to think of the possibilities. We remain thankful and hopeful for Brooke's progress, but we would ask that you pray especially for Brooke's scans tomorrow to be clear. (We will update as soon as we hear the results.)

Hug your own children real tight tonight...we did!

Love,
Bryan and Stephanie

Monday, March 7, 2005 9:05 PM CST

DAY +182: Brooke continues to do very well.

In the last couple of weeks she has had quite a few "new" experiences that have helped her cabin fever. She went to watch Austin's basketball team play for the first time this year (attendance is not too high for nine year old games), she had her first bath in over a year, and she played at Savannah's house a couple of times lately. She has also enjoyed fun visits at our house with Erika, Logan and Kara too!

The highlight of the past few weeks was undoubtedly our trip to Northern Kentucky this past weekend. Morgan's basketball team was playing in a tournament and we ALL MADE THE TRIP TOGETHER! The bonus was that Brooke also was able to play with six of her cousins who live in the area and stay in a REAL HOTEL! The only tough part was the issue of the pool. Mom was confident that there was no need to pack a bathing suit for Brooke (too many germs), but once we arrived and the cousins got together, the conversation QUICKLY moved to swimming. We decided to just go and take a look at the pool (Mom was hopeful for a big crowd and Brooke would know she couldn't go in)...no such luck...not one person at the pool (Break #1). Then we talked about whether swimming would be a good idea or not...Brooke suggested we call the doctor on call (good thinking). As Mom dialed the phone, Brooke sat and listened with her fingers crossed on both hands! Dr. Raj was on call (Break #2) and he said to let her go down for awhile and put her feet in and watch. Uncle Duane then mentioned that they just happened to have an extra bathing suit because Makenna didn't know which size would fit (Break #3 and maybe this was meant to be). When Brooke got to the pool, she quickly put her feet in, ten seconds later she was in up to her shoulders and said, "Hey Mom watch this..." and she put her face in the water! This was not exactly what the doctor ordered, but she had a blast in her abbreviated visit to the pool... and we were quick to wash her and lather her in antimicobial gel back at the room.

On a different note, Brooke has been fighting a runny nose and cough for at least two weeks. She just can't seem to shake the symptoms, but she remains very cheerful. In addition, her appetite is pretty low and we are fairly sure that she has lost some weight (1-2 pounds). We would like to think that once her cold goes away her "regular" appetite will return too. Dr. Bertolone also assured us that it can take six months or more for a transplant patient's taste buds to return to normal. We are ready for that to happen!

Finally, and as always, we could use your help...Brooke has her next CT scan on Monday, March 14th at 1:30. We would ask that you continue to pray that the scans will be clear.
Her sixth birthday is on March 23rd and we cannot think of a better present!

Love,
Bryan and Stephanie

Monday, February 14, 2005 9:54 PM CST

DAY 161: The removal of Brooke's central line went very smoothly and she is thrilled to have it out.

We woke Brooke at 5:15 this morning so that she would be at Kosair by 6:00. Morgan and Austin both got up early too so that they could see Brooke before she left (SWEET!) Once at Kosair, there was the usual: registration, vitals, question and answer with various nurses and then a visit with her anesthsiologist (Dr. Carter) and her surgeon (Dr. Nagaraj). During all of the preparation, Brooke was very relaxed and spent most of her time playing Gameboy and reading a new book from Mrs. Bobbie. Shortly after 8:00, they gave her some Versed and then she became VERY RELAXED! Within a minute, she had a huge smile on her face and blurry eyes, and said, "AHHHH, I feel good." When the nurse suggested that Mom or Dad might hold her steady just to be sure, Brooke began to purposely bob her head back and forth, back and forth. Mom asked her what she was doing and she smiled and murmured in a baby's voice "Eeeney, meaney, mineey, mo"...she was trying to decide which parent would get to hold her. It was very funny to watch.

By 8:20 Dr. Carter was pushing her down the hallway to begin the procedure. Before 9:00, Dr. Nagaraj was in the consultation room with us explaining that the removal was complete and that Brooke had done well. Within the hour, we were able to visit with her in recovery and she was in very good humor...she enjoyed a popscicle (that is better than we have at home) and talked with "Crazy" Tracy on the phone. After recovery, she was cleared to go home. She started off a little slow...just watching television, but by midafternoon, she was really playing hard.

Tonight after we said prayers, Brooke had a couple of quoteable quotes: #1. "I hope I never get a line again, but it has been a good friend." and #2. "It has been a really great day, I could almost cry happy tears."

Me too!

Love,
Bryan and Stephanie

Saturday, February 12, 2005 9:33 AM CST

DAY 159: It is official...Brooke will have her central line removed on Monday!

Tuesday we received the orders in the mail that the removal was scheduled for Monday morning, BUT first her labwork had to be in order before it was certain. The requirements were that her hemoglobin would have to at 10 and her platelets at 75,000. In typical Brooke fashion, her hemoglobin was 11.1 and her platelets were EXACTLY 75,000! When we told Brooke the good news and how close she was on her platelets, she said, "My body did it, it just knew what to do!" (Such confidence)

So Monday morning, she is scheduled to report to surgery at 6:00 AM for registration and anesthesia, removal at 8:00 AM, and then to recovery. We are told that the entire process should take around 5-6 hours and then she should be cleared to return home.

Brooke is very excited to have her line removed, but she is planning on asking Dr. Nagaraj to save the line for her. She has heard of other kids keeping theirs and she wants to do the same. Her line has been such a wonderful help to her and has saved her from SO MANY pokes...it is hard to even guess how many lab draws, transfusions, and medicines have gone through that line in the past 13 months.

We hope you have a wonderful Valentine's Day...it will certainly be one to remember for Brooke. We will update again on Monday or Tuesday.

Love,
Bryan and Stephanie

Monday, February 7, 2005 9:32 PM CST

DAY 154: Brooke has really begun to show glimpses of her "old self" this past week.

Her social life is much improved as some of her restrictions have been lifted. Brooke has been over to Kara's house a few times to play. Friday night she went to the Taco Bell drive thru and then visited with Mom B and Grandad at their house. Sunday she took two friends and Kristen to Loddie and Doug's house for blanket making, cupcake decorating, singing, gymnastics, valentine cards and much more. The kids arrived at 12:30 that afternoon and stayed until almost 10:00 PM. Brooke didn't even want to go with us to a friend's house for a Super Bowl party, but who could blame her...she was having soooo much fun! Thursday Brooke plans to travel to Northern Kentucky with Dad to visit with Grandma and Papa. She is definitely taking advantage of her new found freedom.

Brooke's appetite has continued to improve gradually too. She has been much more interested in eating and we are optimistic that she is at least maintaining her weight. She is scheduled to return to the clinic on Tuesday, February 15th and we will officially check her weight then. Plus with all of the increased activity she has shown, we are hopeful that her counts (i.e. hemoglobin) have gone up as well.

No information yet on the removal of Brooke's central line, but we will update as soon as we find out!

Thank you for your interest in Brooke. We truly believe that her progress to this point is an answer to prayer...ours and YOURS!

Love,
Bryan and Stephanie

Tuesday, February 1, 2005 8:31 PM CST

DAY 148: Brooke continues to progress each day.

Today's appointment at clinic was encouraging. Her white blood cell count was UP to 3.4 (from 2.7), her hemoglobin was UP to 10.1 (from 8.9) and her platelets were UP to 69,000 (from 54,000)...YEAH! While all of this was good news, Brooke was still a little bit shy of the numbers she needed to get her central line removed. Her platelets were too low, they needed to be 75,000. Dr. Cheerva commented that she is confident that Brooke's platelets will be that high by her next clinic appointment on February 15th. In fact, the office staff is going to proceed with scheduling the removal of the line for any time after the 15th. They told us to watch the mail, they will send the orders to us once they are finalized.

The only "bad" news today was that Brooke's weight was down about five pounds over the past two weeks. We think that much of her weight loss is due to a nasty case of "allergic rhinitis" and cough that she is fighting. We expect that once she feels a little better, her appetite will return. Plus, Brooke told Monica (Nurse Practitioner), "Oh yeah I can eat more, our family loves to eat and talk!" (Sometimes the truth hurts!)

Brooke's "immune system" recovery continues too. As we understand it, there are two parts to this ... immuglobulins (which protect from viral and some bacterial infections) and CD4 count (which protects from bacterial and fungal infections). The good news was that her immuglobulins were at 477 (normal: 444-1187), so they have FULLY RECOVERED! The bad news was that her CD4 count was only at 56, and need to be at 553 to be considered "recovered." Monica explained that because her immuglobulins had returned to normal now, the CD4 count should begin to move up slowly too.

Because Brooke's immuglobulins have "recovered" and because we begged, they have given Brooke a little more freedom. Now she can go to a friend's house or Grandma's house as long as everyone is healthy AND any animals or live plants have to be moved to a separate room. Brooke has begun to take advantage...she spent the night with Mom B and Grandad Saturday night, she has stopped in on a few of Morgan's basketball practices, and she went to Kara's tonight to play. Brooke is also busy planning ahead...a visit to Grandma and Papa's next week.

On final piece of good news, Brooke received a letter in the mail last week confirming that she was approved by the Dreamfactory for her dreamtrip to Give Kids the World in Orlando. We plan to talk with the Dreamfactory again in March to tentatively set a date...Brooke cannot wait to go to Disneyworld!

Again, thank you, thank you, THANK YOU. We are reminded each day how fortunate we are to have you with us! Please, just keep praying...


Love,
Bryan and Stephanie

Tuesday, January 18, 2005 8:03 PM CST

DAY 134: Brooke's appointment today at clinic went well.

Her lab results were pretty good. Her white blood cell count dropped a little to 2.7, but her hemoglobin increased to 8.9 (from 8.2) and her platelets were up to 54,000 (from 37,000). Hey, two out of three isn't so bad. Monica and Dr. Cheerva seemed pleased. They also sent additional labwork to Kosair to study Brooke's immune system recovery. Dr. Cheerva cautioned us, however, not to expect too much because her lymphocytes are still low (0.6) and they are usually predictive of immune system status. We should find out the results on Thursday...but for now Brooke continues to be on "house arrest."

We continue to try to fill the days at home with fun for Brooke, but it is beginning to get more difficult. The other kids have such busy little lives...it will be so nice when we can all go ANYWHERE TOGETHER again. To Brooke's credit, she really doesn't complain very often, but you have to wonder what she thinks.

Brooke has had a busy week. She had a follow up appointment with Dr. Silverman (radiation) on Wednesday and that went very well. She even took time out to visit with some of the staff. On Thursday, Erika and Logan (our former neighbors) came over to play after school and Erika even stayed for dinner. It is possible that they tried out EVERY TOY in the house! It was wonderful to see them play together again...almost like old times. Kara on Saturday and Savannah on Sunday rounded out the weekend. Linda and John came by on Monday evening and Brooke "entertained" us all with her humor and spirit.

Looking ahead, Brooke's next appointment at clinic is in two weeks. We are hopeful that at that time it will be possible to discuss more specifically when Brooke can have her central line removed. Today we learned that her platelets need to be at 75,000 and her hemoglobin at 10 before the surgeons like to schedule removal. If she is lower than that, then they would give her transfusions during the surgery and we really don't want that...Brooke is fine with waiting and what's a few more weeks at this point?

All in all, we are happy with Brooke's progress. At times we grow a little impatient, but we try to remember that it doesn't matter how FAST we get there, we just want to get Brooke completely healthy again!

As always, a heartfelt thank you for your continued interest in Brooke. It is hard to believe that she just crossed the ONE YEAR MILESTONE. You are loving and caring friends to have stayed with us this long.

Love,
Bryan and Stephanie

Tuesday, January 11, 2005 9:11 PM CST

DAY 127: Brooke is doing very well!

Last week Brooke had a check up at the clinic. Her white blood cell count rebounded to 2.7 and Monica (nurse practitioner) recommended that Brooke discontinue the pentamidine (IV medicine) and begin taking Bactrim (oral) again. This was an important step because two things had to happen before they would even consider letting Brooke have her central line removed: #1. Her scan in December had to be clear and #2. She had to have her counts recover enough to switch to Bactrim. (Bactrim can lower counts a bit)

So the waiting game continues. If her counts continue to climb, Brooke may get to schedule having her line removed. Today Nancy, the visiting nurse, came to the house to draw labs and her results looked good. Her white blood cell count had increased to 4.6 (normal is 4.1- 10.9), but her hemoglobin (8.3) and platelets (39,000) were still low. Brooke is scheduled to go to clinic again next Tuesday so we will hope for more increases then!

Around the house, Brooke is very active. She and Kara have continued to play together almost every day. Brooke is really enjoying her schoolwork now too. Ms. Leslie, her teacher, has assigned several research assignments on different subjects. Next time you see Brooke ask her anything you like about a katydid, newt, lady bug, otter or octupus...she'll have the answer!

The biggest news on the homefront is that Brooke has begun to sleep in her own bed all night long! It would be great if it had just happened naturally, but the reality is that we resorted to BRIBERY. The deal is this...anything after midnight and she begins to collect. She gets one dollar if she makes it until 1 AM, two dollars for 2 AM etc. The offer is good for seven nights and she has to spend the money on something for ALL of the kids together (movie night and pizza etc.) The first night she slept in until 9:30 AM and came down the steps with her hand out, a smile and saying, "OK show me the cash!" We know we have created a monster, but it is hard to put a value on a good night's rest.

Today, Brooke had a wonderful visit with Allison. They had a pajama party, watched ELF, made a blanket, painted, played with beads and play doh and even made time for a for lunch from Dairy Queen (thanks Grandad!) and chocolate chip cookies (thanks Mom B!). All of this while Dad was away on a business trip and Mom worked with her boss. Brooke ruled the roost and as Allison told her, "You are in charge today!" Brooke took full advantage... Thanks Allison for ANOTHER great day with Brooke!

Thanks to each of you for your love, support and prayers also. Please continue to pray for Brooke, and all the Kosair and Caringbridge families that are dealing with cancer.

Love,
Bryan and Stephanie

Sunday, January 2, 2005 9:23 PM CST

DAY 118: HAPPY NEW YEAR!

What a refreshing thought...to start the year anew. At times it is difficult to reflect on everything that has transpired over the past year. Last year at this time, we were struggling to find an answer to Brooke's lack of energy and pale complexion. We spent last year's New Year's Eve at home by ourselves. As Brooke lay asleep last New Year's Eve on the couch, I can distinctly remember wondering if Brooke really did have pnemonia (as the doctors had said). Deep down I think we all knew it might be something else. And now we know. We have learned so much this year, but mostly we have learned about a little girl who has amazed us at every turn.

For this New Year's Eve celebration we decided to invite Morgan's basketball team and their families over to the house. It was a relaxing night with good friends and a wonderful way to begin laying down positive memories for 2005. Brooke stayed awake and played her heart out until 11:15, and only went to bed with a "pinky-promise" that we would awake her at midnight. A few minutes before midnight, we went to the bedroom to wake her. She sat up in the bed, we put on her New Year's hat and held hands for the countdown to midnight. As the clock struck twelve, Morgan and Austin put the balloons in flight...and we hugged and kissed and kissed some more. The next morning, we asked Brooke about the midnight celebration and with a confused face she replied, "I don't really remember it!" Well she may not remember, but we will never forget what a wonderful night we had on New Year's Eve 2004.

As we start the new year we have such high hopes, but we have learned to enjoy today and not get too far ahead of ourselves. We have learned not to get too high or too low. We have learned to fight like crazy and then accept the outcome. We have learned to pray like we should have before. We have learned that God does really bless us because you can't cry all day. We have learned how meaningful help from a friend can be...and we will spend the rest of our lives trying to do the same for you. We have learned that at times when we didn't think we had the strength to help Brooke like we wanted, that she said just the right thing to help carry US through. We have learned to hug each other real tight. We have learned what matters most and to let the rest take a back seat. We have learned so very much this year.

From the bottom of our hearts, we want to thank our family, our friends, the parisioners at Holy Trinity, the members of St. Matthews Methodist, the staff at Kosair, the Caringbridge families, the Kosair families and all those who have prayed for Brooke. We have so much to be thankful for and we could not have made it this far without your help. You have been there for us in our darkest hours and celebrated our victories.

May God bless your family in 2005!

Love,
Bryan and Stephanie

Saturday, December 25, 2004 5:35 PM CST

DAY +110: MERRY CHRISTMAS!

Brooke has been having a lot of fun lately! The Merrifield family came over and the kids made the most beautiful gingerbread houses that you have ever seen. We held a secret ballot vote for the best gingerbread house and you will be surprised to hear that...Brooke's house won. Don even put up the First Place Prize...ten dollars!

Sunday, while Mom and Dad took Morgan and Austin to basketball games, Loddie came over to make Christmas cookies with Brooke. The cookies were awesome and she had a blast! Brooke loves having Loddie visit.

Tuesday, Brooke had a regular appointment at the clinic. Following her appointment she delivered the jewelry she had made and some photos to the staff at 7 West. She was happy to see Bob, Terry, Lynn, Leslie, and Kasie, but she was also very happy to leave 7 West and go HOME. Later that night Brooke was surprised by a group of Christmas carolers that came to the house. Not only did they sing some favorite carols, they brought a few presents, and finished the night with Silly String! The big kids thought it was very funny, but Kristen was a little scared. We all really enjoyed their visit and it was so nice of Allison and her "crew" to come to see Brooke.

Thursday morning we awoke to 8-10 inches of snow. Linda and John called to see if there were any interested sled riders. Mom, Morgan and Austin joined in the fun and Dad stayed home with Brooke and Kristen. The big kids really enjoyed the day at Cherokee Park, but everyone made a pact that next year we are all going...together! After the sledding, we played some cards and turned up the music in the house. Brooke called Loddie. Loddie came down and brought Doug, Bruce, Phyllis (FeFe), John and Jane. There was dancing and singing and even a Christmas play. Brooke said that it was "tooo much fun!"

Christmas Eve we spent the evening with Mom B and Grandad. We went to church, ate dinner, and opened presents. The kids were spoiled by their grandparents and then before bedtime, we solved the mystery of the "Twelve Days of Christmas." Twelve nights ago a large bag was left on our front steps. Inside the bag, were twelve individual presents, each marked with the date that it should be opened. Last night we discovered that the Graven family had left the bag...Thank you, thank you...it was such fun!

As we enjoy the day together, we especially remember the ANGELS that we have met along the way. The holidays must be so difficult for their families and our hearts go out to each one of them. As a family, we have so much to be thankful for and so much to celebrate. On this Christmas Day as we celebrate the birth of Jesus, we continue to celebrate Brooke's good health and all those who have loved and cared for her.

Merry Christmas!

Love,
Bryan and Stephanie

Monday, December 13, 2004 10:55 PM CST

DAY 98: OUR PRAYERS HAVE BEEN ANSWERED!

Brooke had her CT scan this afternoon. We returned home late today, expecting to hear the results from Dr. Cheerva tomorrow at clinic. Much to our delight, Dr. Soni (Brooke's primary oncologist) left us an email this evening with the only information we really needed to know:

He said that the scan of her abdomen and pelvis was COMPLETELY CLEAR. The scan of her lungs showed that she is much improved and there are NO NODULES seen now, only chronic changes due to surgery and chemo/radiation.

Once we received the email, we made a few late night phone calls to share Brooke's good news. Then just a few minutes ago, Brooke came downstairs for Mom to "tuck" her into bed again (this seems to happen about 3-4 times each night). Dad told her the good news about the scan... and Brooke replied with a smile, "Oh, I knew that!" You have to love the confidence!

Tomorrow, Brooke has an appointment at clinic to check her labwork and review the scan results. We are hopeful to further discuss the results with Dr. Cheerva and get a copy of the final report.

Most importantly, we would like to thank each of you for your continued support and prayers. We are especially grateful for the extra prayers that were said for Brooke's scan today...now we know that OUR PRAYERS HAVE BEEN ANSWERED.

Love,
Bryan and Stephanie

Thursday, December 9, 2004 10:54 PM CST

DAY +94

Tuesday's visit to the clinic was relatively uneventful. As Dr. Cheerva had predicted, Brooke's labwork has continued "to sputter along." Her hemoglobin was down to 8.5, her white blood cells were down to 1.6 and her platelets were up to 48,000 (she had a transfusion on Sunday). Dr. Cheerva assured us that this is completely due to the radiation treatments, but we are anxious to see these numbers rebound.

At home, everything has been going very well. Brooke has enjoyed working on her kindergarten assignments with Ms. Leslie, playing on the computer (especially Hello Kitty...thanks angel Joey!), and playing with Kara. Brooke and Kara have even created their own interpretative dance to "Let it Snow" and we have had MANY performances this week.

Brooke has also begun an exercise program. Each day when Dad returns home from work, the two of them go to the basement and get on the treadmill...Brooke is up to five minutes a day!

We have also had some expected and unexpected visitors this week. This afternoon, "Crazy Tracy" stopped by for a surprise visit after work. Tuesday night, Linda and John came over and we made pizzas for dinner. Brooke made a fabulous cheese pizza and she had so much fun doing it! Then MUCH TO OUR SURPRISE, we heard a "jingling" noise at the front door. Dad went to see what the noise was all about and he told everyone to stay in the kitchen. We had a special visitor. Before we knew it, Santa Claus himself was visiting with the kids and asking each of them what they wanted for Christmas. Then he read a wonderful story to them about the REAL meaning of Christmas. A special thank you to the Graven and Clifford families!

Wednesday we celebrated Morgan's 12th birthday. Brooke and Mom B made her birthday cake. Brooke was quick to explain that she cracked the eggs, poured the oil and water and even stirred the batter. Morgan really enjoyed the cake, but she loved the gift that Brooke made for her...a special poster that she colored almost all day long while she was at school. It was very sweet.

Looking ahead, Brooke has plans to attend the clinic's annual Christmas party on Saturday. Much to our surprise, Dr. Cheerva said that Brooke could go. She did recommend, however, that Brooke come to the party fashionably late...after some of the crowd has left. Morgan has a basketball game at the same time Saturday, so Brooke has a date with Mom B and Grandad for the party...it is hard to say who is more excited!

Brooke's CT scan is scheduled for Monday, December 13th. We would ask that you please say a prayer that the results come back CANCER FREE. We do not expect to learn the results until Brooke returns to clinic Tuesday afternoon.

We will update the website when we have the "official" results.

Love,
Bryan and Stephanie

Wednesday, December 1, 2004 6:25 PM CST

DAY +86: Life for Brooke is beginning to get more "normal."

After months of seemingly endless appointments, scheduled and unscheduled visits to Kosair, surgeries, and radiation Brooke now goes to the office ONCE A WEEK. What a nice change of pace for her! Yesterday at clinic, everything was as expected. Her labwork was on the low side...her hemoglobin that had peaked at 12.1 before radiation was down to 9.6, and her platelets were very close to transfusion level at 20,000. Dr. Cheerva said that the radiation treatments were responsible. She also said that she would not be surprised if her labwork "sputtered along" for a few more weeks. We also learned that Brooke's first CT scan following her transplant is scheduled for December 13th.

Last week they also checked Brooke's immune system levels. This test will determine when Brooke can go outside without a mask, go to public places and REALLY get back to "normal." (All estimations have been that it would take three to six months and possibly even one year for her immune system to fully recover.) This was her first such test and it took place on Day 78. There were two parts to the test... immunoglobulins and CD4 count. The good news was that her immunoglobulins which protect her from viral and some bacterial infections have recovered nicely. Her result was 428 and the normal range is 444-1187. The CD4 count which reflects her body's protection from some bacterial and fungal infections was still very low. Her result was 56 and the normal range is 553-1359. Monica said that when her CD4 count is above 553, they will lift all of her restrictions and discontinue three of the four medications that she is taking. Each month, they will continue to retest her immune system.

Around the house, Brooke has had some fun. We have had a couple "Family Movie Nights", Papa and Grandma came to visit Sunday, Carmen came to visit, we decorated the house for Christmas, and some friends from Holy Trinity...Ginny, Allison and Sarah Urda came to make jewelry with Brooke. She really enjoyed their visit and she sat at the kitchen table for three hours Friday and on Monday putting together some special Christmas gifts! Many thanks to the Urda family.

We will update again next week after Brooke's clinic appointment on Tuesday.

Please pray that Brooke's scan on December 13th will show no evidence of any cancer...it is the only present this family wants for Christmas!

Love,
Bryan and Stephanie

P.S. We updated the photos tonight

Thursday, November 25, 2004 8:04 PM CST

DAY +80: HAPPY THANKSGIVING! We realize now more than ever just how much we have to be thankful for.

On Tuesday, Brooke had her first appointment at Bone Marrow Transplant clinic. She was seen by both Monica and Dr. Cheerva. They both said that she is doing very well. Her lab results were pretty good...her hemoglobin was 10.1, her platelets were 47,000 and her white blood cells were at 2.6. All of these results are considered "low" but not unexpected given that she just completed radiation last week. To our surprise, they also took a blood sample to evaluate her immune system. They have told us that it should take between three and six months (maybe up to a year) for her immune system to recover...so this is early, but we will be excited to hear the results. Monica said to call her on Friday and she would let us know.

Traditionally, we travel on Thanksgiving to be with family, but because Brooke's immune system has not recovered, she is restricted. It is required that she remain in the house unless she is traveling to a doctor's appointment, and then she must wear a mask at all times. So today's plan was easy...STAY HOME! We had a wonderfully quiet and peaceful day.

This morning Brooke started off with her latest "breakfast of choice"...grilled cheese and Ruffles potato chips. Oh, and don't forget the ketchup with the chips. Bryan worked in the yard and the kids played games. This afternoon, Bryan took Morgan and Austin to play in a flag football game with the Graham family and friends. Brooke and Mom took a quick nap and then decided to drive over and watch the game from the van. At first, Brooke was reluctant about going. When we arrived she quickly found it very entertaining. One man was wearing a big cowboy hat, there were crazy antics following all of the touchdowns, Daddy had his hat on backwards, and she thought it was comical to watch Morgan playing football! She laughed and laughed and told Mom, "If I knew it was going to be this funny, we would have come earlier!"

Later this afternoon, Mom B and Grandad arrived at the house and we put the finishing touches on our meal. The kids REALLY, REALLY wanted to eat in the dining room so we set the table, complete with the fine china. Morgan and Brooke put in the Christmas music and we were on our way to a very wonderful meal. As Brooke asked the blessing before dinner, we all knew it was a special moment. Following dinner, Loddie stopped by with some of her family who wanted to meet Brooke and we had a nice visit with them. Later, Linda dropped by for a quick hello. After dessert and the Charlie Brown Thanksgiving Special, Brooke went straight to sleep.

Thanksgiving is yet another reminder of how thankful we are for our many blessings...

Love,
Bryan and Stephanie

Monday, November 22, 2004 9:39 PM CST

DAY +77: Brooke is doing very well, but in many ways this has proven to be the most difficult journal update. As scheduled, Brooke completed her final radiation treatment on Thursday at 10:20 AM. This was officially the FINAL STEP in her treatment plan. Ironically, this day that was so much anticipated and longed for also brought the devastating news that Evan Lee Gates, our 15-year old friend, ended his fight this same day. He began his bone marrow transplant on November 2nd, and complications ended his life on November 18th at 10:10 PM. Evan's funeral liturgy was held today and our deepest sympathy goes out to Diane, Jeff and Sheridan. They are a wonderful family!

With a heavy heart for the Gates' family, we have encouraging news for Brooke. The balance of the radiation treatments went very well following the glitch with the computer on Monday. Brooke fared very well and came to know and enjoy the company of the staff and Dr. Silverman.

The final day of radiation was on Thurday and Brooke had plans to celebrate...at Dr. Silverman's expense. You may recall that following Brooke's abdominal radiation in June, she celebrated by "silly-stringing" Dr. Silverman. Not to be outdone, she decided that chocolate cake with chocolate icing would do the trick this time. With fair warning to Dr. Silverman, he changed into an old lab coat following Brooke's final treatment. Many of the staff circled around, and Dr. Silverman cautiously approached Brooke. She announced that she had an early "birthday present" for him and proceeded to smash two beautiful, homemade, chocolate, teddy bear cakes on either side of his lab coat. The staff broke out in laughter, Dr. Silverman played his part, Brooke laughed hysterically and we are expecting a dry cleaning bill. Once again, there are very few doctors for which a cake-smashing would be appropriate, but Dr. Silverman is truly one of a kind!

The past few days have been remarkably "normal." Brooke is feeling very well and has few complaints. Her appetite is in overdrive and we plan to ask the doctor tomorrow if we can wean her from the appetite stimulant. (She literally snacks all day and probably eats 3-4 grilled cheese sandwiches each day too.) Her hair is really starting to grow back in...we even had the need for shampoo tonight! However, despite all of the positive signs, Brooke still requires Mom to sleep in her room each night. We are hopeful that a few weeks away from Kosair will increase her confidence and she will be able to sleep comfortably upstairs without company.

Tomorrow, Brooke will make her first trip back to clinic since before her transplant that began on August 31st. She has officially "graduated" from follow-up appointments at OMO in Kosair. This is yet another milestone we have to be thankful for this season. We wish you and your family a wonderful Thanksgiving holiday and we would ask that you keep the Gates' family in your prayers.

We will update again on Wednesday or Thursday.

Love,
Bryan and Stephanie

Monday, November 15, 2004 10:35 PM CST

DAY +70: Week Two of lung radiation has begun...sort of.

This morning Brooke reported to OMO (Outpatient Medical Observation) to receive the "usual" premedications. Each day before going to the Brown Cancer Center for radiation, Brooke gets zofran (to prevent nausea) and benedryl (to prevent allergic reactions) at OMO. After she receives those, the nurse gives her amifostine (protective of normal cells in radiation) and the clock starts. Within sixty minutes of getting the amifostine, Brooke needs to have her radiation complete to get the protective benefit of the drug.

Today Brooke had received her amifostine right on schedule. We quickly jumped in the van and traveled to the Brown Cancer center, parked, and checked in at the office. Unfortunately when we arrived, the nurse explained that the "computer" was down and they could not do her treatment yet. All the while, Brooke was running out of time...literally. We waited until the sixty minute time frame was complete. Still no computer. The nurse spoke with a doctor that was covering for Dr. Silverman and she said to send us home and we could just get today's treatment tomorrow.

Easy for her to say...Brooke spent nearly four hours trying to get this treatment, she had to have a one hour infusion of calcium to offset the amifostine at home, and then an assessment with the visiting nurse. To make matters worse, she also had a fairly bad bout of vomiting with today's medications and developed a rash on her arms for several hours (benedryl took care of that). Somehow, Brooke took it all in stride.

The plan remains the same. Brooke still needs three more days of radiation and we now expect that she will complete those treatments on Thursday. All in all. it was just a bump in the road, and there was not really anything that could be done about it, but it certainly was a long day for Brooke.

Thank you again for your continued prayers!

Love,
Bryan and Stephanie

Thursday, November 11, 2004 9:19 PM CST

DAY +66: HOME SWEET HOME!

Brooke was discharged this evening promptly at 6:00 PM. We had hoped that she could leave a little earlier today, but rules are rules and this was a "48-hour admit." The clock started when Brooke's blood cultures arrived at the laboratory at 6:00 PM Tuesday night. From that point, IF nothing "grew" in her cultures, IF she didn't have any additional fevers, and IF her counts were high enough...she could be discharged by Thursday night. Brooke passed all three and was so happy to come home. As she left tonight, she told everyone at the nurses' station, "You can erase my name from the board!"

Overall Brooke's stay at Kosair went well. The mornings were busy because she still had to go to the Brown Cancer Center (a few blocks away) for her radiation. Once she returned, however, the rest of the day belonged to her. She played some games, worked on a little homework, visited with Carmen last night, and watched some home videos (great idea Dad!) She really loved watching those and so did we...it was heartwarming to see.

Brooke looks so good (Proud Mom). Her weight that was once a little on the "heavy" side has begun to even out, her coloring is good because her hemoglobin is so greatly improved, and yes....the hair has begun to return. Brooke routinely reminds us that she does not want her hair to grow back. She prefers not to have her hair brushed or ribbons and bows. Bald is beautiful! However, just in the last couple of days we have noticed her gently rubbing the new growth. She even told Dad that she "loves how it feels."

Brooke will go to radiation tomorrow morning and then will have a well deserved weekend off. Next week she will complete her radiation treatments (Monday, Tuesday, Wednesday). Wednesday will not only end her radiation, but will also signify the final step in Dr. Soni's plan for Brooke. We continue to believe that this "plan" has provided the perfect balance between aggressive therapy and long term safety.

We continue to be so very grateful for Brooke's health and spirit. Her fabulous attitude has been an inspiration to us. We are sure it is a direct result of the many, many prayers that have been said on her behalf...From the bottom of our heart, "THANK YOU!"

Love,
Bryan and Stephanie

Tuesday, November 9, 2004 10:08 PM CST

DAY +64: Unfortunately, this update comes from Room 729 of Kosair Hospital.

This morning Brooke had her second treatment of lung radiation. Prior to the radiation, she took a drug (amifostine) that has been shown to have a protective effect for healthy cells. The doctors know that amifostine can also lower calcium levels temporarily, so a visiting nurse came to the house following Brooke's treatment to draw labs to check her calcium. While the nurse was assessing Brooke, she took her temperature...100.8 under her arm, which means her actual temperature was 101.8. A quick call to Kosair, and after NO DELAY we were told to bring Brooke to Kosair to be admitted.

No surprises when she arrived. Straight to Room 729...her name was already on "the board." All of the routine admission questions and then the worst part...the peripheral blood draw for cultures. To make matters worse, the nurse wasn't able to get the blood the first time, so now Brooke has a bandaid on both hands! The only good part about the whole thing was that just as the nurse was getting ready to try for the second time...in walked "Crazy Tracy" who recently left Kosair to take a new job. She had come to visit Evan who just had his transplant today, and she heard that Brooke had been admitted too. Her timing could not have been more perfect and she certainly helped to calm Brooke! Brooke loves her (and we do too).

The blood cultures have been sent and the results will be read at 24 hours and 48 hours. If nothing "grows" in the culture, then the assumption is that the temperature was just a reaction to the amifostine. We are hopeful that that will be the case and she will be able to return home very soon. However, if some infection is found, then the doctors will treat accordingly and Brooke will likely be hospitalized for awhile.

Despite the fever and admission, the plan for radiation remains unchanged. Brooke will still go tomorrow morning for Day #3 (of eight days) of her lung radiation treatment. Please continue to pray for Brooke.

Love,
Bryan and Stephanie

Sunday, November 7, 2004 9:17 PM CST

DAY +62: Brooke continues to amaze us each day!

Friday's labwork was great. Her platelets reached 137,000, just 3,000 shy of "normal." Her white blood cells reached 4.1 (normal is 5.5-15.5). Her hemoglobin increased to 12.2 which is normal and sooooo much higher than it has been this ENTIRE YEAR. Brooke's actions reflect the change. She is actively moving around the house, rarely naps during the day, and has even complained of being "bored." It is unbelievable what a little oxygen will do to perk a kid up.

The weekend was very nice. Kara came to play with Brooke for several hours on Saturday. They played a few games and enjoyed a popcorn party watching Shrek 2. Today Brooke rode with Mom to Holy Trinity and watched the "Father-Son" football game from the car. It was a beautiful fall day and Brooke loved watching the action. Austin would want you to know that the sons soundly beat the fathers!

Tomorrow begins Brooke's lung radiation. This is undoubtedly the most difficult decision we have had to make during the entire process. When Brooke was sick in January-March, it was easy, we had to do anything and everything to make her well. She was so sick! The chemotherapy, surgery, abdominal radiation, more chemotherapy and then the high dose chemotherapy and stem cell rescue all followed logically. Now we have a child who "acts healthy" and they cannot see any lesions in her lungs...Believe me, we are not complaining...but it sure makes it hard to sign her up for lung radiation which carries so many potential risks.

The bottom line is this...Brooke's original CT scan from January read that the lesions in her lungs were "too numerous and various in size to even count" and we know that at least some of the cells were anaplastic (BAD) cells. It sure scares us to take Brooke to lung radiation, but it scares us more not to.

With that said, please join us in praying that the radiation will completely clear her lungs of any possible remaining cancer cells and that her lung function will not be compromised. We have learned one thing about this website...when things are going well, we do not update very often, but when we need your help and your prayers, we go to the website very quickly. Thank you in advance for your prayers for Brooke, and please include our friend, Evan, who began his transplant last week.

Love,
Bryan and Stephanie

P.S. We added new pictures tonight!

Monday, November 1, 2004 8:39 PM CST

DAY +56: Brooke has had a great week and has continued to improve each day.

Thursday, she returned to OMO and her bloodwork was very encouraging. Her hemoglobin rose to 10.6 and it has not been that high, without a transfusion, since before January. Her platelets were still low but also increased, without transfusion, to 67,000. We are hopeful that she has completed the phase of needing regular blood and platelet transfusions.

Brooke's highlight on Friday was the "Pumpkin Carving Party" at our house. She and Grandad carved their pumpkin together...Brooke took over the role of supervisor, and Grandad did a nice job with the carving. Great friends and some good pizza made for one VERY HAPPY BROOKE. Oh, and the pumpkins turned out nice too!

Saturday, "Loddie" volunteered to babysit and most importantly, Brooke agreed with the plan. Mom and Dad ran out for a wonderful dinner at Napa River Grille. The kids had a blast playing games, making jewelry and playing "Treasure Hunt." Brooke stayed up pretty late, but she was most excited that Saturday was her last night of TPN and lipids...54 days, WOW! We are thrilled for her!

Halloween went so nicely Sunday and we did find a way for Brooke to join in the fun. Technically, Brooke is only supposed to leave the house for medical visits, and anytime she is outside she must wear a mask. With that in mind, we dressed all the kids up as a medical team. Brooke was the chief surgeon and wore "Dora" scrubs and a white doctor's labcoat that read, "Dr. Clemons." (I guess that would make her "Dr. Dora Clemons.") Of course, she also wore a mask, a hat, sterile gloves and shoe covers. The other kids also wore scrubs and all of the "extras" too. In total, she only really went trick-or-treating at a couple of neighbors houses, but she did have fun. The rest of the night she rode in the car with Mom and watched the other kids trick-or-treat. Then we drove to our former neighborhood, parked in the center of the cul-de-sac and Brooke "visited" briefly with everyone through the car window. As Brooke went to bed, Mom asked, "On a scale of one to ten, how was your Halloween?" At first, she said, "Ten," but then she corrected herself and said, "No, eleven!"

Today, we had a consultation appointment with Dr. Silverman in radiation oncology to discuss the radiation to Brooke's lungs. The radiation will begin on Monday, November 8th, and will be every day for eight days thru November 17th. Dr. Silverman is optimistic about the treatment for Brooke and said that he expects that she "will sail right thru it." However, we did spend 15-20 minutes discussing the long-term complications that can arise as a result of whole lung radiation...chronic inflammation to the lungs, heart problems, hepatitis, thyroid issues, and finally secondary cancers. Unfortunately, choosing not to move forward with the radiation is not an option. Although there is no evidence of tumors in Brooke's lungs today, her disease was so advanced at diagnosis, that EVERYONE agrees that despite the risks...this is in her best interest.

We continue to be amazed at Brooke's improvement and realize that the road ahead may present complications, but for today and for right now, we are so very thankful for Brooke and for the good health that she enjoys.

Tomorrow Brooke returns to OMO. We do not expect any big changes. If not before, we will certainly update the website following Brooke's radiation next Monday...

Love,
Bryan and Stephanie

Monday, October 25, 2004 7:58 PM CDT

DAY +49: Today's visit to OMO went well.

Brooke's labwork was "good enough" that she did not require any transfusions today. Her hemoglobin increased to 10.0 and her platelets increased to 49,000, but her white blood cell count decreased today (from 2.97 Thursday to 1.97 today)...so they are going to watch that closely. Brooke will need to return on Thursday for more labwork because of the lower white blood cell count, and because she is still on TPN and lipids. Monica explained that when you are on TPN and lipids you have to be seen twice a week.

Now that Brooke's stomach is more settled (i.e. no vomiting and diarrhea), the goal is to get her eating regularly again. Tonight they reduced her TPN and lipids to eight hours from twelve. The theory is that if she gets LESS nutrition at night, perhaps she will have MORE of an appetite...we certainly hope so! Dr. Cheerva even suggested that after a few days of eight-hour TPN, she MAY discontinue the TPN altogether...as early as this weekend. Brooke thought that was a really neat idea, but Dr. Cheerva cautioned Brooke that she would have to do her part and really work on the eating and drinking if they stop it completely. When it happens, this will be another "big step" in the process.

This week looks pretty full. Tomorrow Brooke has her regularly scheduled "visiting nurse" appointment with Jill, and then a former Childlife intern from Kosair, Erika, is coming over for lunch and games. Wednesday, she will meet with Ms. Leslie, her homeschool teacher, and Aunt Sylvia is planning to come to visit. Thursday, Brooke will return to OMO, and on Friday, she is planning a "Pumpkin Carving Party" at our house!

We continue to be so thankful for Brooke's improvement...it truly is a blessing.

Love,
Bryan and Stephanie

Sunday, October 24, 2004 8:28 PM CDT

DAY +48: Day by day, Brooke continues to improve!

Medically, she is doing well. Brooke went to OMO on Thursday and all of her labwork was stable. Her hemoglobin increased slightly to 9.4 and although her platelets were a little lower (41,000), she did not require any transfusions! She did receive pentamadine, a one-hour intravenous medication to prevent pneumonia, as scheduled...but it was easy. This drug is scheduled every two weeks through December.

Symptomatically, Brooke is doing great. FINALLY, the vomiting and diarrhea appear to be gone. It has been over two days since she last vomited, and her diarrhea has been under control for over a week. Her eating is still slow at this point, but each day she "nibbles" just a little more. We are hopeful that as her stomach continues to feel better, she will want to eat more and more frequently. The good news, however, is that her weight is just about the same today as it was before transplant. It seems that the TPN and lipids that run each night for twelve hours are sustaining her.

Socially, Brooke is rebounding some too. She continues to enjoy visits from HEALTHY friends and family, but Brooke is funny - it has to be on her schedule...I don't know where this control gene comes from (HA HA). This week's highlights were "Annie" concerts in the kitchen...Brooke just sings her heart out, school with Mrs. Leslie, game playing (Sorry and Pass the Pigs), computer games, and her latest enjoyment...movie making using the camcorder.

Tomorrow Brooke will return to OMO. If her bloodwork continues to be stable, Dr. Cheerva said Brooke may move to a weekly schedule. If she requires a transfusion, then it is likely they will want to see her back again on Thursday. It is not a big deal either way, but once a week sure sounds better than twice a week!

Once again, we would like to express our sincere gratitude to each one of you for your support. Now that our world has slowed down a bit, we can appreciate even more all that you have done to help our family through these past nine months. WE ARE SO VERY GRATEFUL!

Please continue to keep Brooke, the children of 7 West, and all of the Wilms' families in your prayers...

Love,
Bryan and Stephanie

Monday, October 18, 2004 8:42 PM CDT

DAY +42: Brooke has continued to improve.

On Friday when she went to OMO, Monica said that because her hemoglobin was steady at 9.2 and her platelets were relatively high (79,000), she could have the "weekend off." Brooke was thrilled...a whole weekend without a checkup!

Dr. Soni also visited with Brooke on Friday and we had a nice conversation about Brooke's transplant. He said that he is very pleased with her progress to this point, and said that he "expects" that it will take 3-6 months for her immune system to fully recover. Practically speaking, what that means for Brooke is staying inside almost all the time unless she is going to Kosair, wearing her mask anytime she goes to Kosair or outside for any reason, limiting visitors that come in contact with her, and HAND WASHING like crazy. If Dr. Soni is correct, this way of life will continue until sometime between December 6th and March 6th. The upper limit on her immune system recovery is about one year(Sept)...but we're hoping Dr. Soni is right!

The weekend was filled with lots of activity for Brooke. On Friday night she rode with Mom to drop Morgan off at a birthday/slumber party and then she visited with the Merrifield family who came to visit. On Saturday, she watched a couple of movies with Dad, rode with Mom to take Morgan to a skating party, and then played with Austin and Wes that night. However, the highlight came Sunday morning. Routinely, we try to have a nice breakfast together each Sunday before church, but that hasn't happened lately. This Sunday we pulled it off, and resumed our "Sunday Family Breakfast." Brooke even joined in and ate some of Dad's eggs and a bite of bacon!

This morning, Brooke received more good news at OMO. Her hemoglobin was relatively unchanged at 9.3 and her platelets were only a little lower (55,000), so she did not require any transfusions...translated QUICK VISIT! Her white blood cell count (1.87) and ANC (1009) were both a little low today, but Jill (Brooke's visiting nurse) will draw labs during her regular appointment tomorrow at the house. Tomorrow's results will really only determine if Brooke needs a Neupogen shot tomorrow night or not, to boost her white blood cell count.

We are amazed at the difference one week has made for Brooke. We are seeing glimpses of her personality returning each day. She has made enormous progress, and we continue to be so very thankful for every step she has made.

We will update at the end of the week, after Brooke's visit to OMO on Thursday. Thank you for your prayers, prayers, prayers...

Love,
Bryan and Stephanie

Wednesday, October 13, 2004 9:45 PM CDT

DAY +37: Brooke would tell you that she is getting better.

She has continued to show improvement over the past couple of days. Her stomach complaints are fewer, and the number of vomiting and diarrhea episodes are on the decline too. We still are "on the ready" with buckets in every room, but there is no doubt that her symptoms are better!

Medically, today's visit to OMO (Outpatient Medical Observation) went well. As expected, Brooke did need platelets, but Monica said that she was pleased with the vomiting and diarrhrea "trend." Brooke's hemoglobin held relatively stable at 9.7, and Monica said that Brooke MAY be able to hold her red blood cells now, without transfusion. The only advice she had for Brooke was to try to eat more. Generally, Brooke eats TWO bites of something a day...Monica requested that she make it FOUR bites a day now.

On a personal note, today was a tough visit for Brooke. One of her very favorite nurses, Tracy Wortham (aka Crazy Tracy) had her last day today in OMO. Tracy has taken a new position with Louisville Oncology, with adult patients. It is a nice move for her and her family, because she can be home every morning with her children and won't need to work on the weekends, but the halls of Kosair will never be the same. We all love Tracy and will miss seeing her at Kosair.

What is next for Brooke?
1) Friday: Brooke will return to OMO. It is unlikely that she will need red blood cells or platelets, but the labwork will suggest if she needs to return on Saturday, Sunday, or even Monday for her next follow up appointment.

2) October: Will be filled with follow up appointments in OMO with Monica and the doctors. This week, Brooke went four out of seven days, and it will gradually taper as Brooke improves.

3) November: On November 1st, Brooke has her next appointment with Dr. Silverman, radiation oncologist. Brooke will receive radiation to her lungs, which is considered to be the most dangerous relapse site. The lung radiation will complete her medical management.

Then we wait for Brooke's immune system to recover completely (3-12 months) from transplant. We are told that they will run the first test on her immune system around Day 100 (December 15th...not that we're counting!)

We continue to be so thankful for the improvement we have seen in Brooke. We have asked Brooke to fight hard and give us 100 percent...and she has not let us down. There is no doubt that God has given her enormous strength!

We will update again over the weekend.

Love,
Bryan and Stephanie

Monday, October 11, 2004 9:54 PM CDT

DAY +35: Slowly, but surely, Brooke is moving in the right direction.

Sunday, we had a wonderfully, beautifully, fabulously quiet day at home. No ballgames, no hospital, no committments! Brooke called Carmen (of course!) to visit, and Austin was thrilled because Wesley came too. They spent the day doing many different things...playing on the computer, coloring, playing store, watching tv, and playing hide-n-seek with Morgan and the boys. It was a full day of fun for Brooke, and bordered on "normal." By late afternoon, Brooke was ready for a nap, but she had had a great visit!

This morning, the routine began again. Morgan and Austin went back to school and Brooke returned to OMO. Brooke's visit went very well. Her hemoglobin was 10.3 and her platelets were 35,000. Both numbers are considered "low," but not low enough for a transfusion. Brooke was happy when she found out that she didn't need anything, but she was ecstatic when Monica told her she didn't need to return until Wednesday. Brooke celebrated with a fist pump and a look to the heavens!

Aside from Monica's good news, Brooke had a great social visit at Kosair today. First, Leslie (one of Brooke's favorite nurses) stopped in to say "hello." Then Brooke was able to see little Hannah (~ 22 months) who began her transplant in May of this year. Hannah even blew GERM-FREE KISSES (transplant families are a little crazy!) to Brooke from the hallway. Jeff and Bobbi have been a real source of inspiration for us and we share their joy for Hannah's remarkable progress.

Brooke's activity level has improved every day. After a full morning at OMO, Brooke sat at the kitchen table and completed her homework from Ms. Leslie with Morgan and Austin this afternoon. Tonight, she helped to clear the table after dinner, sang and danced with Kristen, and played a few games of Mouse Trap with Doug and "Loddie."

Unfortunatley, Brooke is still not eating much at all...two bites of a pizza roll today, two potato chips and a bite of a popscicle yesterday. We are hopeful that her appetite stimulant (Megace) will "kick in" soon and she will feel like eating again. Also, she is still stuggling with vomiting and diarrhea, but that should get better when she is able to eat something and hold it down.

Brooke returns to Kosair on Wednesday and we expect that she will need at least platelets then. We will update following her visit.

We are SO THANKFUL for Brooke's progress, and we continue to be grateful for your prayers...

Love,
Bryan and Stephanie

Saturday, October 9, 2004 7:41 PM CDT

DAY +33: Brooke is still struggling with her stomach, but as she reminded me Friday night DURING a vomiting episode, "I don't like it, but it is BETTER being at home!"

Friday, Brooke reported to OMO at 9:00. Monica examined Brooke and reviewed her labwork. Everything was at an acceptable level, but she rescheduled Brooke to return Saturday morning because her platelets were "borderline." The only change she recommended was to add in a Neupogen shot to increase her white blood cell count (2.25) and ANC (1080). Brooke was thrilled to be sent home so quickly. When we returned home, we were surprised to find "Loddie" in the house...unpacking our gear and doing the laundry. Everyone needs a friend like her! Later, Brooke called and asked Loddie's husband, Doug, to stop by and they all enjoyed a game of Mouse Trap.

Friday afternoon completed Brooke's homecoming. Morgan, who had been on her 6th grade trip with school, came home. Brooke had missed her VERY MUCH and was so happy to have her back home too! We enjoyed a quiet night at home together and EVERYONE went to bed early (not even time for a journal update!)

Saturday morning started early. It was fun to get back into the routine with everyone home and going in a million directions...we love the chaos. Morgan had volleyball at 9:00, Austin had football at 9:00 and Brooke was due at OMO at 9:00. With a little help from Grandad, everyone made it to their destination. Morgan and Austin's teams both won and Brooke had a good visit to Kosair.

Brooke's white blood cell count increased dramatically to 13.2 and her ANC was 10,800. WOW! As expected, her platelets were very low (13,000) and she needed a transfusion. Dr. Raj saw Brooke today and he made one addition to her medicines...sodium bicarbonate, because her sodium was a little low. The only other concern he had was that Brooke is still not really eating anything. He made a deal with Brooke. If she would eat something "real" today, he would let her skip Kosair on Sunday and return on Monday morning. Brooke agreed.

Dad brought Brooke home around 12:30. She relaxed on the couch while he ran a couple of errands and stopped at McDonald's to pick up some SALTLY french fries. When he returned, Brooke ate three of them. Hey, it's not much, but it IS an improvement. The rest of the day was pretty lazy for Brooke. A nap on the couch, a game or two, another nap upstairs in her room and some television tonight. Mom B stayed with Brooke while we went to church this afternoon, but other than that we were together all day...what a blessing.

We are hopeful that the next few days will continue to show improvement for Brooke. She still has some vomiting and diarrhea, but mostly during the night. During the day, she also complains of stomach pain, but it does seem somewhat better.

Please continue to keep Brooke and all the children at 7 West in your prayers. We also "found" a new friend, four year-old Kyle in Iowa, who also has Stage IV Wilms tumor. He just began his stem cell transplant a couple of days ago and he could use your prayers too. His website is www.caringbridge.org/ia/kyle.

We will update again on Monday following Brooke's visit to OMO.

Love,
Bryan and Stephanie

Thursday, October 7, 2004 9:42 PM CDT

DAY +31: IT IS WITH A THANKFUL HEART WE REPORT... BROOKE IS HOME...AMEN AND AMEN!

Brooke sealed her discharge last night by not vomiting at all. We had agreed that if Brooke had a difficult night, we would stay at Kosair awhile longer. If she was the same or better... we would request that she come home. Brooke made it easy on everyone. Monica came in this morning and checked on Brooke and began talking about follow up appointments in OMO and prescriptions. There seemed to be NO DOUBT in her mind that Brooke was ready.

Quickly, we began packing and preparing for home. Dad picked up the prescriptions and brought them to Kosair...Monica carefully checked each one for the appropriate dose and made sure that we understood all of the dosage instructions. Loddie arrived early in the afternoon to help put the finishing touches on Room 731. Mom rushed to pack her belongings in the Ronald McDonald Room and left Kosair to pick up Austin and Kristen from school. They wanted to help "escort" Brooke home. As we drove to Kosair, Austin confessed, "I can't help it, these are tears of joy!"

As we waited for the discharge paperwork to be completed by Elaine (Brooke's nurse), Brooke had her own "photo shoot" in the hallway. Many members of the staff stopped by to wish Brooke well and had their picture taken including ..Lynn (receptionist), Angie (social worker), Kellie (clinical research coordinator), Barbara (nurse practioner), Monica (nurse practitioner), Jill (ultrasound), Dr. Soni and Dr. Raj, and Bob (nurse). Around 3:30, Brooke left Kosair.

When Brooke arrived home she was delighted and so surprised to see a six foot tall angel waiting for her in the front yard. The angel held a star in her hand reading, "Welcome Home Brooke". In addition to the angel, Brooke noticed that there were also balloons on the mailbox and a "Welcome Home" sign on the garage door. Brooke was very happy.

When Brooke came into the house, she moved from room to room. As she approached her favorite perch, the kitchen couch, she began to pick up speed. Then, to our surprise, she literally jumped onto the couch to relax. Next she climbed the steps to her bedroom...she couldn't resist, she had to lay down on her own bed. Later as she sat in the family room, Mom asked her, "How does it feel to be home?" Brooke replied, "I feel like my old self again."

Everyone is thrilled that Brooke is home tonight. She has returned to her own bed upstairs tonight to sleep. Tomorrow she will return to Kosair at 9:00 to the OMO area to be evaluated by Monica. Monica will assess Brooke's need for blood or platelets and review her other lab results.

Words cannot begin to express our gratitude to the staff of Kosair and to those who have helped us through the past nine months. So many people have reached out to our family in a special way and made this journey possible. We are eternally thankful. Thank you God!

Love,
Bryan and Stephanie

Thursday, October 7, 2004 1:30 AM CDT

DAY +30: Brooke had a much better night last night and IF everything goes as planned tonight then...BROOKE MAY GO HOME TOMORROW!

There were many visitors to Brooke's room today. Monica came in early and said that she was pleased with Brooke's improvement overnight and that she was increasing her Ativan (anxiety) dose and adding Megase (appetite stimulant). She also gave Dad all of Brooke's prescriptions so that they would be filled before she arrives home. Dr. Soni stopped in to check on Brooke and he told her that he doesn't even have to think about her anymore, she is doing so well. The VNA (Visiting Nurse Association) representative came in to discuss discharge information and Nancy met with Mom to review the teaching sheets for discharge from transplant. Dr. Raj, who is on service, also checked on Brooke and he said that he will only discharge Brooke when she "smiles at me."

Last night Brooke had only a couple of "vomiting/diarrhea episodes." This morning she did physical therapy, had school with Ms. Leslie, watched Andy Griffith with "Crazy Tracy" and Dad, and then enjoyed a visit from Austin and Kristen tonight (Morgan is on her 6th Grade trip to Camp Piomingo). This was the first time that Kristen has been allowed into Brooke's room, and she took full advantage. As soon as she got into the room (after she washed her hands!) she climbed into bed with Brooke and the two hugged really tight. Then Brooke suggested a Strawberry Shortcake video and they watched it side by side in the bed. It was very sweet watching them and we are optimistic that Dr. Raj will get the smile he is looking for tomorrow.

Monica stopped Brooke's Neupogen shot on Tuesday, and as expected her white blood cell count dropped to to 3.86 and her ANC dropped to 2470 today. Dr. Soni explained that it is beneficial to stop the shots when you can because red blood cells and platelets recover faster when she is not getting the shot. It is likely that she will need the shot every second to third day for awhile longer. Today she required a blood transfusion (her hemoglobin was 7.7) and platelets (15,000).

Most importantly, Brooke appeared confident about going home today. On Monday, she was hesitant and said that she wanted her stomach to get better first. Tonight she made a few phone calls to tell people she was coming home and sang "TOMORROW" (from ANNIE) out loud with Angie (her night nurse). Tomorrow would be great...

Love,
Bryan and Stephanie

Tuesday, October 5, 2004 10:17 PM CDT

DAY +29: Last night was hard for Brooke, but we are hopeful that some of today's medicine changes will make for a better night.

Brooke did not rest well last night. In fact, she had nausea and diarrhea at 2:00, 4:30, 7:00, 10:00 and 11:00 AM. Brooke was NOT HAPPY! After a discussion with Monica (nurse practitioner) and Kasie (Brooke's nurse), we agreed on several medicine changes that we think may help her. Monica discontinued her Prevacid and Carafate (both stomach medicines) and started Ativan (anxiety) and Pepcid (stomach). Later in the day it was decided to also discontinue her Methadone. The Methadone was designed to help Brooke adjust to the withdrawal symptoms from her pain medicine (fentanyl). Unfortunately, we believe it was also partly responsible for the "events" of the night.

The rest of the day went very well. By 2:00, Brooke was playing on the computer and having fun. She played HELLO KITTY, LIFE, and NEMO. Around 3:00, Alisha (Childlife) stopped by and they continued on the computer for awhile longer. When Alisha shared with Brooke that she once sang competitively as a child, Brooke decided that we needed to play some music in the room. A few preschool songs and ANNIE (of course) followed. It was quite a sing-a-long in Room 731! Around 5:00, Brooke settled in for a quick nap and Daddy arrived for bathtime. Tonight, Brooke was still in good spirits, and she even told Daddy that they needed to get some more pictures of her with the nurses. All of Brooke's nurses have been so wonderful to our family.

There are a million examples, but here are two quick ones.. Brooke doesn't like to get the dressing on her central line changed, but if anyone is going to do it, Brooke wants Jill (her VISITING NURSE that comes to our home)to do it. So this morning, Jill came to Kosair for the third or fourth time to change Brooke's dressing as a favor! Another example from tonight...It is no secret that Brooke hasn't been eating much, mostly Flavor Ice push ups, and we were having trouble getting them at Kosair. Leslie didn't let that bother her, she called her boyfriend at 9:00 and asked him to pick some up for Brooke. He went to Kroger, bought some and delivered them to Kosair!

We are so grateful for the care that Brooke has received to this point. Please continue to pray for all of the children on 7 West, their families and their caregivers!

Love,
Bryan and Stephanie

P.S. Brooke's white blood cell count was 5.72 today and her ANC was 4061. YEAH!

Monday, October 4, 2004 10:55 PM CDT

DAY +28: Brooke will not go home tomorrow as we had hoped, but she really is NOT READY just yet...Brooke even said so herself. This morning, Monica (nurse practitioner) explained that there were still some issues that needed to improve before Brooke might be comfortably discharged home:

1) PCA pump must be discontinued - Brooke's stomach has remained painful at times and she "needs" the PCA (patient controlled analgesia) pump. The dose is much lower today (5 mcg/hr) than in the past(a high of 80 mcg/hr). Everyone seems convinced that Brooke is having some withdrawal pain from the fentanyl. To offset this pain, they started methadone with Brooke today. She took it four times today, she will take it three times tomorrow, and finally she will go to two times per day until the stomach pain has improved. Monica stated that they will remove the basal rate of 5 mcg/hr tomorrow and then monitor her very closely.

2) Brooke must eat more - So far Brooke has only eaten about one third of popscile and some jello. Monica is reducing the time and amount of calories in her TPN (total parenteral nutrition). She was originally on 20 hours per day, then tapered to 16 hours, and tonight they wrote for 12 hours only. Monica believes that this may stimulate her appetite and thirst.

When we talked with Brooke about her stomach pain, she agreed that she should stay at Kosair. Brooke thinks that her stomach hurts too much to go home without her "button" (the button that she pushes when she needs more pain medicine). She said that she wants her "belly to get better first." We assured Brooke that as soon as she thinks she is ready to go home, we will push very hard with her doctors and nurses. Ideally, Brooke and the doctors will come to the same conclusion at the same time!

After a tough start to the morning with several bouts of vomiting, Brooke had a nice afternoon and evening. She played LIFE and HELLO KITTY (thanks Angel Joey) on the computer, watched cartoons and visited with Carmen who was out of school for the day. Tonight, cousin Melony came to visit after welcoming their nephew, William Palmer, into the world...YEAH! It was a great ending to a nice day.

Brooke's labwork has continued to trend upward. Her white blood cell count has begun to approach the "normal" range at 4.14, and her ANC was 2980. While we would have loved to take Brooke home tomorrow, we really are not too disappointed. We are satisfied that she is moving in the right direction, and hopeful that she can still make it by the end of the week.

Thank you for your endless support and prayers, prayers, prayers!

Love,
Bryan and Stephanie

Monday, October 4, 2004 0:35 AM CDT

DAY +27: All the preparations for home continue!

This morning we were delighted to see that Brooke's white blood cell count skyrocketed to 2.86 and her ANC was 2116. Dr. Ahuja continued to make changes in her medicines...he discontinued her final antibiotic (Zosyn), discontinued her hepartin, changed her acyclovir to oral, decreased the time on her TPN and lipids to 16 hours from 20 hours, and further decreased her pain medication. Brooke continued to do her part, taking several medicines orally throughout the day without much complaint.

After a slow start this morning, Brooke had a terrific afternoon and evening. Once Carmen came to visit, there was a wonderful shift in her personality. Gradually, Brooke seemed more comfortable. First, just a little conversation, then some game playing, and then she even got to the point where she was answering the phone. She must have taken four or five phone calls herself...Carmen is one of Brooke's best medicines!

After some homework at Kosair this afternoon, Austin was thrilled that the doctors allowed him to visit IN THE ROOM today. He quickly entertained Brooke with his own version of charades. Brooke thought he was silly! Tonight when Morgan visited, Brooke insisted on playing her new Looney Tunes game with her. It would be hard to say who had more fun, Brooke because she won, or Morgan because she was able to be with Brooke in the room.

As we anxiously await Brooke's return home, we have been told to make sure that a few preparations are made in advance...cleaning the house and carpets is atop the list. MomB organinzed a "cleaning crew" second to none. Today with only very short notice, MomB, Loddie, Kelly, Mrs. Byrne, MoJo and Al, Judy, Julie and Dad made the house "sparkle." Our house has never been so clean!

Tomorrow will be Brooke's trial run. All of the IV medications have been discontinued, and she will take the full load of oral medicines throughout the day. The pain medicine will be tapered off too. Assuming no complications, we still expect to go home on Tuesday. Undoubtedly, Brooke will have to return on Wednesday to a place called "OMO" or "SHORT stay" which is just down the hallway. There Monica will assess her and review her labwork to see if she needs any transfusions or any other changes.

Thanks for your prayers...they seem to be working!

Love,
Bryan and Stephanie

Saturday, October 2, 2004 10:27 PM CDT

DAY +26: There is still much discussion about getting Brooke home early next week.

Brooke's labwork has continued to trend upward. Her white blood cell count was up to 1.69 (normal is 5.5-15.5) and her ANC was up to 997. Brooke's labwork is getting better each day. She has not needed any blood for five days, because her hemoglobin has stayed high enough. Her platelets, as expected, have been more difficult to maintain and she has needed platelets nearly every day, but that will just take time.

Today the doctors discontinued another antibiotic (Flagyl). Tomorrow they plan to stop the Zosyn. They moved her antifungal medicine (voriconazole) to oral, twice daily. Tomorrow they will likely move another IV medicine that is three times a day (acyclovir) to oral as well. There is no doubt that Brooke will go home on many medicines, but home sure sounds good. Dr. Ahuja is still saying that the magic day will likely be Tuesday. Tomorrow they will complete most, if not all, of the medicine changes. Then they can monitor her on Monday, and get her home on Tuesday.

Brooke continued to show signs of improvement in attitude and spirit today. She has become more conversational. For the first time in a long time she has started to initiate conversations, not simply reply when asked. She played a game with Julie (her nurse) and Mom B this morning. Then again tonight, we played more games... and Dad reports more singing at bathtime! Things are looking good and we are cautiously optimistic about her return home on Tuesday.

One further update: There will be a blood drive at Holy Trinity (423 Cherrywood Road/897-2785) on Tuesday, October 5th from 4:00 - 9:00. The drive will be located in the school cafeteria. The blood supply is very low right now and the kids on 7 West could use your help. If you or someone you know could make it, it would be a personal favor for our family.

Thank you so very much for all of your support and prayers.

Love,
Bryan and Stephanie

Friday, October 1, 2004 9:44 PM CDT

DAY +25: Everything has continued to move in the right direction.

Brooke's white blood cell count was 1.41 and her ANC was 831. Today, they discontinued one of her antibiotics (vancomycin) and they will remove the remaining antibiotics (Zosyn and Flagyl) on Saturday and Sunday if she doesn't spike a fever. Additionally, they moved one of her medicines (Prevacid) from IV to oral. If everything goes "smoothly" then they will continue to move other IV medicines to oral as well. The goal is to get her off of all the antibiotics, and switch her IV medicines to oral so she can go HOME. We were pleasantly surprised when Dr. Ahuja offered that he was considering "Monday or Tuesday" to discharge Brooke. We were thrilled and shocked that he brought up the subject BEFORE we did.

At the risk of sounding like a broken record, Brooke has continued to complain of her stomach hurting. She still has had several bouts with vomiting, but we are hopeful that it will get a little better each day.

Dr. Ahuja's comment about HOME was the highlight of the day, but a close second was "BROOKE'S MOVIE NIGHT." Tonight, Morgan was at a friend's birthday/slumber party (gotta keep the social life going), so Austin, Kristen and Kara (our neighbor) came down to Kosair to watch "Cheaper by the Dozen" in the hallway with Brooke. Everyone seemed to have a good time and again there were many smiles. After they left around 9:00 tonight, Mom was sure that Brooke would be very tired...not so. She talked with Kathie (her nurse), opened some presents from the O'Koon family, showed Mom her special treats from Miss Colleen that came from the St. James Art Fair, and then talked to Dad on the phone very, very late tonight. Somehow bedtime became 11:30.

Oddly enough the last thirty-one days have gone quickly in some ways. Just knowing that she is getting so close to home is a great comfort.

Our heartfelt thanks for your prayers and encouragement.

Love,
Bryan and Stephanie

Thursday, September 30, 2004 11:08 PM CDT

DAY +24: Brooke is getting stronger every day.

Her white blood cell count dropped just a bit to 1.38, but her ANC was actually up to 731. (Brooke was the only one to notice that her ANC is the same as her room number!) Her hemoglobin was 9.3 and her platelets were 50, so she did not require any transfusions today. YEAH! Both Monica and Dr. Ahuja said that she is doing very well. They did not remove any more antibiotics today, but they did discontinue her lasix. That was the last drug designed to improve her kidney function...so now her kidney is on its own. We are hopeful that the doctors may "drop" another antibiotic tomorrow.

Dr. Ahuja suggested today that Brooke may begin to experiment with something new to drink (i.e. Sprite)...or even eat. She is still not drinking very much and not eating at all. In fact, she has not eaten anything since she was admitted on August 31st. Fortunately, the TPN and lipids are doing the trick, and Brooke has actually maintained her weight! Brooke commented the other day, that her belly would like to have something to eat, but she did not want to rush it. Maybe her belly will want to try something soon.

Brooke had a nice day. After a quiet morning, "Loddie" came to visit this afternoon and delivered on the "best back rub" in town. Then Alisha, from PT, came and everyone joined Brooke in her aerobics. Later in the afternoon, Leisa, Logan and Erika stopped by and checked on Brooke through the "plastic wall." Brooke was resting and cashing in on another "Loddie" back rub at the time, but she knew that they were here! Tonight, Brooke had a very special treat. Dr. Ahuja gave Brooke permission to leave her room, as long as she remained in the bone marrow transplant area which is separate from the rest of the 7 West floor. Not only did she get to venture out into the hall tonight...Morgan, Austin, Loddie, Mom and Dad were all allowed to join her. The kids were required to wear a gown over their clothes, but no one seemed to mind. It was great for Brooke to get "out" for a bit, and just as great for Morgan and Austin to get be with her. Everyone was very happy. The visit in the hallway lasted for about one hour and ended a stretch of FOUR HOURS that Brooke had been out of bed... that was a record!

We continue to be grateful for Brooke's improvement and for your prayers...

Love,
Bryan and Stephanie

Wednesday, September 29, 2004 11:08 PM CDT

DAY +23: Brooke has continued to improve slowly, but surely.

Brooke showed a nice improvement in her labwork. Her white blood cell count increased to 1.5 today, but her ANC dropped to 604, based on the calculation that is used. Dr. Soni stopped by today and he said he didn't care about the ANC decline, all that matters is the white blood cell count increase. Dr. Muchant (nephrology) explained to Brooke that there is no reason for her group to continue to follow her any more. Her kidney is doing just fine. Oh, how we LOVE to hear that! Dr. Ahuja (oncology) did not even make it to the room today...we think that is a very good sign...but he did write the orders to discontinue one of her antibiotics (tobramycin). One antibiotic down, three more to go. We think that Brooke is moving in the right direction.

Last week, we told Brooke that she had three areas that needed to improve...her fever, white blood cells, and stomach pain. Thankfully, the fever has broken and stayed away, and the white blood cells have begun to engraft. However, her stomach pain is still evident at times and the doctors decreased her pain medicine today. It appears that her stomach pain will be the toughest to get resolved.

A quick recap on the day...Brooke again had school and physical therapy. She received an "A+" on her homeWork and there was another round of kickball in the room. Brooke thought it was especially funny when she kicked the ball and it hit Mom in the head. It was so nice to see her laugh out loud...and a small price to pay to get that response! Tonight, Patrick, a former Childlife intern, stopped by to visit. They played two games of Spongebob Uno and each person won one game. It seems that Brooke has gotten a little rusty in the past few weeks. Hopefully, she will want to "practice" more tomorrow. The night was complete when Uncle Duane came down for his "Wednesday Night Visit." He realized that to win the "When Will Brooke Come Home" contest he would need to place a new bet...his date was no longer possible. When he chose his new date for the calendar, Brooke said with a smile, "Just write LOSER down!"

SMILES AND LAUGHTER IN ROOM 731 TODAY. THANK YOU LORD!

Love,
Bryan and Stephanie

Tuesday, September 28, 2004 9:59 PM CDT

DAY +22: Good news...we may have finally "TURNED THE CORNER."

This morning when Nicole (Brooke's nurse) gave us the lab results we were thrilled to see that her white blood cell count was up to 1.08 and her ANC was 712. The goal is to maintain an ANC above 500 for three consecutive days, so we are optimistic that Brooke is on her way. In addition, the doctors were pleased that Brooke made it most of the night without her blow by oxygen, and her oxygen sats remained above 90. Her kidney function was also very good with a creatinine of 0.5 (normal is 0.5-0.8) and her BUN just missed at 22 (normal is 7-18). Finally, we were so delighted that the fevers have continued to stay away.

There are still a few areas for improvement. Brooke continued to have stomach pain and vomiting today. The frequency of the vomiting has increased a bit, but the stomach pain may have actually decreased some. She has continued to drink, but only in very small amounts. They will allow her to drink 12 ounces each day, but she probably only had five or six ounces total.

The only change that Dr. Ahuja recommended was to discontinue one of the antifungals, Cancidas. We are hopeful that he will discontinue more medicines each day as her counts improve and Brooke gets stronger. Before she can go home she has to have and ANC above 500 for three consecutive days, not be using the oxygen, stop using the PCA pump for pain, and be able to take all of her medicines orally. Depending on who you talk to, Brooke should be able to come home in one to two weeks.

Brooke was still very tired for most of the day, but she did manage to work in a school lesson with Ms. Leslie and physical therapy with Alisha. Ms. Leslie left a small amount of homework to do and Alisha "encouraged" Brooke to play some kickball in the room...so you know she is doing better. Tonight we followed the "normal" routine for when Morgan and Austin don't have ballgames or practice after school. Bryan brought them both to Kosair, we had dinner in the Ronald McDonald Room, Dad gave Brooke her bath and Mom helped with homework. Kristen stayed home tonight with Mom B, and Grandad arrived around 8:00 for Brooke's neupogen shot (a.k.a. "the baby"). Somehow, it all just seems to work out.

Again, we would like to thank each of you for all that you have done to HELP US make it work. We have tried to tell you personally how much we appreciate what you are doing, but please understand if we missed you somehow. We know how fortunate we are to have so much support and we are indeed grateful.

Love,
Bryan and Stephanie

Monday, September 27, 2004 10:25 PM CDT

DAY +21: This morning at 6:15 AM, Sean Patrick Robinson ended his suffering. Sean was a good friend to Brooke and had relapsed with ALL. He underwent a transplant several months ago and lost his battle today...right next door in Room 732. Our deepest sympathy to Lisa, Eric and Travis.

With a heavy heart for Sean, we have encouraging news for Brooke. Her white blood cells jumped to 0.720 and her ANC was 432, she remained afebrile for the fourth day in a row and she would tell you that her belly pain has gotten a little better. Dr. Ahuja said that he would not recommend any changes to her medications at this point, but he is happy that Brooke "talked" to her white blood cells last night. We are hoping that they talk again tonight!

Brooke remains in "isolation" for the twenty-seventh day and we continue to try to keep her entertained as she improves. When you look out Brooke's window, the main attraction is the construction that is being done on the Frazier Rehabilitation building next door. However, in the distance you can see many downtown office buildings... including the Hilliard Lyons building. This afternoon, Dad called our friend, Don Merrifield, who works at Hilliards. Don located a security guard to let him on top of the building. He stood atop the office building and gave Brooke a wave unlike any other... across two or three city blocks. Brooke loved it! Oh, what people will do to make Brooke smile!!

Tonight Brooke's friend, Kara, came to visit with her dad. Although Kara had to stay outside the "plastic wall," they were still able to see each other, talk to each other, and watch "Daddy Daycare" on the DVD player together. Brooke was so tired at the end of the night, but she was thrilled that she got to see Kara. It was a great ending to Brooke's day.

Please pray for all those who are fighting cancer, the children of 7West, and specifically for Sean tonight.

Love,
Bryan and Stephanie

Sunday, September 26, 2004 10:39 PM CDT

DAY +20: Things are moving slowly, but it appears to be safe to say that they are moving in the right direction.

Medically, everything appears to be about the same. Dr. Ahuja (oncology) was the first doctor that visited with Brooke today. He said that everything is "going well" and there would be no changes today. He did suggest that Brooke "talk" to her white blood cells and invite them to come out. We couldn't agree more! Then Dr. McKenny (nephrology) stopped in to confirm that Brooke's kidney function was stable and he would not be making any changes either. It was nice to have a day that was not filled with a list of questions to be answered...there was a calm about today that we have not had for awhile.

Finally, Dr. Soni (oncology) came by and reassured us about the delay in count recovery. He said that it is unusual to have an autologous transplant using bone marrow as the source, most patients use peripheral stem cells which tend to engraft sooner. He researched the average time to count recovery for an autologous bone marrow patient and confirmed that Brooke is still within range. Brooke's white blood cell count was up slightly today to 0.375 and her ANC was 240.

Brooke's temperature has continued to be in normal range for three days in a row. Her tongue has healed more, and she has become more interactive each day.

The highlight of the day was a visit from Grandma and PaPa this afternoon. PaPa suffered a stroke on August 27th and this was his first visit from northern Kentucky (1.5 hour drive) to see Brooke. She was very excited that he and Grandma were coming today. When they arrived, Brooke was resting in the bed, but when PaPa entered the room she immediately outstretched her arms to him. PaPa moved to the edge of her bed, sat beside her, and held her. Brooke's hands clasped around his neck. Neither seemed anxious to let go...it was a "moment." As promised, Brooke got out of bed for PaPa and everyone visited together. After about 90 minutes, Brooke (and maybe even PaPa) were pretty tired. Grandma and PaPa returned home and Brooke went back to sleep, but it was wonderful while it lasted.

This evening, we feel we have so much to be thankful for. We are blessed with Brooke and our other children, our parents, extended family, and so many friends who have been there for us along the way. Thank you again for your continued prayers for PaPa, Brooke and all of the children on 7West as they continue to improve.

Love,
Bryan and Stephanie

Saturday, September 25, 2004 9:14 PM CDT

DAY +19: The waiting game continues.

Dr. Ahuja came by today and discussed the results of the CT scan. He said that because they did not see any signs of an abcess or a fungal infection, he believes that Brooke's stomach pain is related to the mucositis. He also said that he would not be removing any of her medications because her fever is just now under control. He will wait for her counts to come back up before he makes any changes there. Finally, he told us that he is not concerned about the length of time is taking for her counts to recover. Nikki (Brooke's nurse) showed us, in one of her nursing books, a chart outlining average time to count recovery (ANC > 500). The book showed that for an autologous bone marrow patient, like Brooke, the average time frame is 28 days. That made us feel better!

Brooke's white blood cell count was down to 0.281 and her ANC was 221. She still had stomach pain and one bad bout with mucositis tonight. Brooke's energy level was low today, but her hemoglobin was 7.2 (normal is 11-14)...that would make anyone TIRED! She received both blood and platelets, so we are expecting that she will feel a little more energetic tomorrow.

Physically, Brooke looks better. The skin that peeled under her arms and in her groin area has been replaced with new baby soft skin. Her lips are not as chapped as once before and the inside of her mouth is beginning to heal. Her weight has stabilized and she doesn't look as "puffy" as she did last week. We are seeing improvement, we just wish we could hit the fast forward button for Brooke.

Until tomorrow...

Love,
Bryan and Stephanie

Friday, September 24, 2004 10:47 PM CDT

DAY +18: WONDERFUL NEWS! The results of the CT scan are in and there are no changes from the baseline scan done prior to transplant. No fungal infection. No abcess.

The morning was busy for Brooke. After the routine activities...urine tested, weighed, stomach measured, temperature and blood pressure taken...preparation for the CT scan began. Brooke had to take a medicine by the name of Mucomyst to move the contrast through her kidney more quickly. The nephrologist told us yesterday that it did not taste very good, but she failed to mention that it smelled (and no doubt tasted) like raw, spoiled eggs. Wow, four milliliters of that at 8:00 AM...what a start to Brooke's day. Thankfully, Kasie (Brooke's nurse) suggested that she hold her nose as she swallowed it. It seemed to work, and Brooke did not complain too much. Next, the prehydration fluids were started. Then at 10:00, Brooke began to drink the oral contrast. Ordinarily, this would not have been a big deal, but Brooke had been restricted on her liquid intake since Tuesday (four ounces every eight hours)to limit vomiting and the stress on her stomach. This morning, the CT scan staff needed her to drink EIGHTEEN OUNCES IN TWO HOURS to get a clear picture. We were not overly optimistic that she would be able to hold the contrast down because it was such a drastic change, but she did it! And finally, just before she got in the wheelchair for her ride to radiology...another four millileters of Mucomyst. By 12:30, Brooke was in the CT room and she was back in her room shortly after 1:00.

When she returned to the room, we were sure that she would be ready to take a nap. Surprisingly, she wanted to listen to the ANNIE soundtrack that Aunt Karen sent to her. As Brooke began to sing along it was hard to hold back the emotion of the day. We had just traveled the halls of Kosair making every effort to protect her from exposure to everyone, with no security guards available... Mom and Dad were the traffic cops and stopped people in the hall to say, "Transplant patient, would you please stop until she passes?"...then we returned to the room to contemplate the possibilities of the scan, and sweet Brooke wants to SING!Despite all that she had been through this morning, over the course of the past twenty four days, and even the past eight months, she reminded us that nothing has changed the fact that she still is a five year old little girl at heart.

Tonight around 10:15 PM, the pediatric resident on call, Dr. Brooks, came to deliver the good news. She said that the radiologist had paged Dr. Ahuja, Dr. Ahuja called the resident, and she came to the room to give us the good news..."no changes from baseline, no fungal infection and no abcess seen." We expect that Dr. Ahuja will interpret the results more specifically for us tomorrow, but we will rest easier tonight.

Brooke's fever was improved today as well. Her temperatures ranged from 97 to 101 and she has only taken Tylenol one time in the past twenty-four hours!

There are still obstacles for Brooke to overcome. She is on a remarkable number of medicines...thirty-five possible on her medication list. Some are given only as needed and some are "just" her mouth and skin care meds, but any way you look at it ...that is a lot. She is still using the blow-by oxygen at rest and her white blood cell count is still low. Today her count was 0.335 and her ANC was 207.

Nonetheless, we are encouraged by the events of the day and thankful beyond words for Brooke's improvement. We would like to thank each one of you for all that you have done. We have been overwhelmed by the notes of encouragement, the gifts, meals, transportation, and prayers. It is hard to imagine facing this alone, and we have been comforted and strengthened by the love of our family and friends.

Love,
Bryan and Stephanie

Friday, September 24, 2004 2:00 AM CDT

DAY +17: What has caused the fever and pain in Brooke's abdomen continued to be the topic of discussion today.

Dr. Soni came to Brooke's room this morning, examined her, and recommended that she get a CT scan of her abdomen, chest and pelvis. He said that a persistent fever signals some type of infection and we need more information. Depending on what is found, he said that a change in antibiotics might be enough, or if there is some type of abcess, then Brooke might need to have it "drained." Dr. Soni said that he would expect to find the source of her infection in her abdomen based on her pain, but he wanted to ensure that there have not been any further changes to her lungs too.

We had hoped to get the scan done today, but that was not possible. Before the oncologists scheduled the CT scan, they consulted with nephrology. Brooke will need to have an IV contrast (dye) to get the best picture, the contrast is tough on the kidney, she already has so many drugs on board that are tough on the kidney, so how could we make this better? Dr. Muchant (nephrology) suggested that Brooke take a medicine that will push the contrast through her kidneys more quickly. Brooke will take this medicine four hours prior, again just before, and then one time following the scan. She also will have some prehydration fluids for good measure. Because all of this needed to be done and coordinated, it was decided to wait until tomorrow. Her scan is scheduled for noon.

Additionally, the doctors decided to make some changes to her antibiotics. They removed ceftazidime and added Tobramycin and Zosyn for better gram negative coverage. Brooke's fevers which ranged from 101-103 yesterday, have improved to 99-101 today. At least she has moved in the right direction.

Brooke's white blood cell count was still low today. Her count was 0.254 and her ANC was down to 183. We decided tonight to pull out all the stops. Morgan and Austin helped put up Brooke's sign from August that reads, "WHITE BLOOD CELLS ENTER HERE" on her door, complete with a target. Hey, it worked last time!

Compared with yesterday, Brooke did seem more tired today. She took quite a few naps, but she participated in physical therapy with Alisha...they even played some kickball in the room!

We are hopeful that tomorrow's scan will give the doctors the information that they need to manage Brooke's pain and fever. Dr. Ahuja cautioned, however, that it is sometimes difficult to get a good scan on a neutropenic (low white blood cell count) patient. He said that it is possible that they may not be able to "see anything." We will update the website with whatever information we receive tomorrow.

Again, we remain grateful for your prayers for Brooke and her doctors and nurses. We truly believe that they have and will continue to make a difference.

Love,
Bryan and Stephanie

Wednesday, September 22, 2004 11:15 PM CDT

DAY +16: Here we go again...the issue of the day was FEVER.

This morning, Dr. Ahuja and Monica assessed Brooke. They were very pleased with her kidney function, especially since the dopamine was removed yesterday. As of tonight, the only drug she is taking for her kidney function is lasix twice a day (at one point she was on four "kidney drugs" ...lasix, dopamine, mannitol, and albumin). The fevers, however, were still a concern. Essentially, Brooke has had a fever since Monday afternoon at 4:00. The temperature has gotten lower from time to time, but she has never really broken it.

This afternoon, Dr. Ahuja and Monica returned. The fever had still not broken, and they made the decision to add a second antifungal agent. They choose Cancidas which has a "lower propensity for renal effects than with amphotreicin B." We were pleased that they chose Cancidas because of the kidney issue, but it was tough to accept even the possibility of a fungal infection for Brooke. The signs (CT scan, ID consult,) still indicate that she does not have a fungal infection, but the persistent fever forced their hand. The reality is that her counts are still dangerously low and we need to be careful. Her white blood cell count dropped to 0.344 today and her "ANC" was "212." We are thankful for their aggressive treatment, we just wish it wasn't necessary.

Enough on the medical update. We have tried to focus on Brooke to evaluate how she is doing. There is no doubt that she was stronger today. She has continued to amaze us with her determination. It would be easy at this point (22 days at Kosair in the same room) for Brooke, or anyone else, to be discouraged. While she has had her "moments," on the whole she has decided that she wants to go home soon and be with her sisters and brother. She said earlier, "I want my own coke, my own bed, and my own house!" Oh baby, we want that too!

We had many signs of improvement today. Brooke was doing things that we haven't seen in two weeks...She stayed awake almost the entire day with only two very short naps. She had school today with Ms. Leslie for the first time since transplant. She enjoyed "Loddie" and Doug's visit tonight, and she even let "Loddie" help Dad with the bath. And finally, she enjoyed Uncle Duane's "Wednesday Night Visit" again.

We would ask that you join us in praying for Brooke's fever to break and for her white blood cells to increase quickly.

Love,
Bryan and Stephanie

Tuesday, September 21, 2004 9:48 PM CDT

DAY +15: Everything seems to be back on track for Brooke tonight. This morning Dr. Soni (Oncology), Dr. Ahuja (Oncology), Monica (NP), and Lucy (Pharmacy) met in the hallway outside Brooke's room to formulate a revised plan.

Brooke's fever yesterday generated concern that there might be some type of infection. In general there are three types of infection to worry about post-transplant...fungal, bacterial and viral. The biggest concern last night was the possiblity of a fungal infection in Brooke's lungs. The infecious disease doctor reported that her CT scans did not suggest that this was the case. The blood cultures were negative for a bacterial infection, so the assumption is that it is a viral infection in her lungs. Dr. Soni said that he is 99 percent sure that it is viral. This is good news.

The pain in Brooke's belly has continued, but she would tell you that it is a "little bit better" today. Dr. Ahuja said that the x-ray from yesterday was not a good film, so he ordered another abdominal x-ray today. This was Brooke's third trip outside the room and she received the same special treatment for her trip to radiology. She had two security guards to clear the hallways and she even had her favorite transportation person, Karen. Dr. Ahuja was concerned that there may be a bowel obstruction, because the bowel is "paper thin" and that could explain her discomfort. Thankfully, the results proved that there were no obstructions. Dr. Ahuja concluded that Brooke is doing "very well for Day 15." We concluded that we like this new doctor in the oncology group!

In general, everyone seems to think that Brooke has too much fluid on her lungs. She has been on blow-by oxygen for four nights now. The decision was made to limit her fluid intake and try to dry out her lungs. They decided to discontinue the dopamine and made Brooke NPO for 36 hours. Brooke was very happy about the dopamine part, because it was on a separate pump that had to be carried to the bathroom with her every time. However, the NPO part has been a bit of a battle because she had really just started to drink two days ago and really liked it. Thank goodness for ice chips!

To manage her pain better, the doctors' increased her fentanyl dose today. It was also thought that being NPO would let her stomach rest and decrease the pain. Dr. Ahuja said that her "stomach was just not ready yet." Overall, she does seem to be more comfortable.

This afternoon and evening, Brooke seemed more like herself. She watched more television, talked more and even.... smiled! After her bath, Brooke had a surprise visitor...Patrick, one of the former Childlife interns. It didn't take long for them to pick up where they left off. Brooke asked him if he was ready to lose, he said "Yes" and they quickly started a game of LIFE on the computer. You know the rest of the story...Brooke won.

Overall, we are cautiously optimistic. Brooke's white blood cell count was 0.420 today and her ANC was "210." Thank you for your continued prayers...

Love,
Bryan and Stephanie

Monday, September 20, 2004 11:17 PM CDT

DAY +14: What a tough day. Today, the two big questions for Brooke were...stomach pain and fever. We have been working hard to get some answers.

This morning, Brooke seemed to be doing relatively well. She complained of some stomach pain, but nothing we hadn't heard before. As the day progressed, it seemed clear that the stomach pain was not going away...at all. This was a change from the past couple of days, when her stomach would hurt and then get better. When Dr. Cheerva made rounds, she suggested that we get another abdominal x-ray to rule out anything unusual. She told us that she expected that the x-ray would be fine, but it would probably show some gas build-up that might be causing her stomach to cramp.

The pediatric resident called the room late tonight, to tell us that the x-ray showed that there was no apparent obstruction or anything unusual...and very little gas?. While that was good news, we need to know what IS causing Brooke's pain. The doctors' who reviewed the x-ray tonight suggested that it may be that her stomach has not recovered enough from the mucositis yet. If that is the case, we must get some more pain medicine back on board quickly. Over the last couple of days, her pain medicine had been cut more than in half, because they thought the pain medicine was causing her stomach to cramp. Job #1 tomorrow is to get Brooke more comfortable.

Generally, Brooke is very uncomfortable now. Her comments today about her stomach started with..."I don't like my belly." Then she switched to, "Get better belly!" later in the day. By tonight, she changed to my personal favorite, "I wish I had your stomach, Mom."

As it relates to her fever, Brooke had made if for two full days without any Tylenol. Around 4:00 this afternoon, Brooke's temperature rose to 102.2. Shortly after, Dr. Cheerva came by for rounds. She said that if Brooke's fever continued, she may be forced to restart Abelcet (antifungal). She said that a fever at this late stage, counts that are slow to recover and changes on her CT scan, caused her to be suspicious of a fungal infection. I discussed our concerns with this drug...chills, fever, and kidney function and even suggested the addition of a Merck antifungal...Cancidas instead of Abelcet...IF she must add another antifungal. Cancidas is known to have less kidney toxicity. She said Albecet is the "gold standard."

Leslie (Brooke's nurse) came in the room and said that Dr. Cheerva would like to see me in the hallway. Dr. Cheerva explained that "this could be very serious and we would not want to wait until it was too late" to add another antifungal. Now she really had my attention, but she did agree to an infectious disease consult for Brooke. This day that had begun with some concern over stomach pain, suddenly had turned into something that could be "very serious."

Dr. Harrison (infectious disease) stopped by later in the evening. He stated that the changes in the CT scan were only "mild changes." He added that these changes were not consistent with concerns over any big fungal infections like aspergillus or candida. Practically speaking, he added that he would not recommend adding any other antifungal to the one she is taking (voriconazole)and no Albecet is needed. Cancidas could be added later, IF necessary.

While the late afternoon and early part of the evening were stressful, we have the information we need now. We are very thankful that Dr. Cheerva was open to getting another opinion on Brooke's care. Unfortunately, this is not a guarantee that Brooke won't get a fungal infection at some point, but it does give us some piece of mind for the next few days. Now more than ever, Brooke needs her white blood cells to get going. They have increased her Neupogen shots (which speed the recovery of white blood cells) to twice a day...Grandad is busy!

Today's white blood cell count was 0.197 and her ANC was "79." We are hopeful for a big increase tomorrow!

Love,
Bryan and Stephanie

Sunday, September 19, 2004 11:39 PM CDT

DAY +13: Brooke still has a lot of work to do, but there is no doubt that she was a little better today.

She had only one signifigant "episode" with mucositis this morning and sparingly needed the suction for her mouth all day. Her lips, that at one point had been so terribly split, have now almost completely healed. Her fevers have continued to stay away and she is physically getting stronger. When she walked to the bathroom or to the chair today, she was much more sure of herself.

The big "milestone" of the day was that she drank for the first time in over a week. This morning she asked for a "McDonald's Coke with no ice." (She knows the rules...no ice, unless it is a sterile ice cube from 7 West... until her counts recover). Unfortunatley, her stomach was not completely ready for a drink, and it only stayed down for about an hour. Julie (Brooke's nurse) told her "Don't worry it is going to take some practice for your stomach to get used to drinking again." Brooke was fine with that explanation, and we were back getting a McDonald's Sprite later in the day and then another Sprite before bed. Each time she did a little better holding it down. She is trying to drink water tonight.

Dr. McKenny (nephrology) came by this afternoon and said that her kidney function is "stable and her urine output has increased nicely." He discontinued one of her medicines (mannitol) today, her albumin was discontinued yesterday, and the lasix and dopamine are still on board.
This is the trend that Brooke needs...slowly discontinuing medicines as her body is able to take over again.

Brooke's mouth has continued to be sore, but is improving. This morning she let Julie help us with her mouth care (three seperate mouthwashes) and you could see the difference immediately. Some of the sores in her mouth stopped bleeding and some loose skin was "rinsed away." By evening, she was ready to do it herself! Her stomach has also continued to be a problem for her. We asked Dr. Cheerva about Brooke's stomach, and she told us that the lining of her stomach looks just like the inside of her mouth...enough said, it must REALLY hurt.

Relief is on the way though...her white blood cell count increased from .100 yesterday to .237 today and her ANC was "99." We are hopeful that Brooke is on her way...

Love,
Bryan and Stephanie

Saturday, September 18, 2004 10:58 PM CDT

DAY +12: The reaction to the Abelcet last night continued well into the morning. After the Demerol and two doses of Tylenol, Brooke seemed to relax. Gradually, her chills, temperature, and heart rate stabilized, but she remained on the oxygen through the night. Based on all of the side effects, the Abelcet was discontinued completely...Brooke won't miss that drug!

More good news...Results of the chest CT scan showed no signs of infection or pneumonia. The scan did confirm that there is some fluid build up on the lungs, but that was not a surprise at this point in her treatment. The fluid is expected to resolve over time. Additionally, Brooke has not had a fever for 24 hours. She has continued to frequently use the suction device throughout the day to clear her mouth, but the big mucositis episodes have greatly diminished in the last couple of days too. YEAH!

In general, Brooke had a nice day and was able to get out of bed several times today. She exceeded the three hour goal that Monica (nurse practitioner) had set. It is easy to see that it really does make a difference when she gets out of bed. When Brooke sits up, she never needs oxygen, but after she lays down for an hour or two, her oxygen level drops rapidly. Again tonight, Brooke is using the blow by oxygen to maintain her level in the high 90's while she sleeps. Kari (Brooke's nurse) said that oxygen on a transplant patient is not unusual at all...it is actually more unusual that she has not needed it before now.

Brooke's chief complaints today were her "belly" and her mouth. Several times during the day, Brooke complained of pain in her "belly," but it is hard to say if it is getting better or worse. Her lips have actually improved in appearance, but the inside of her mouth is very sore and painful now.

Brooke's white blood cell count went down to 0.1 and her ANC dropped to "35." Initially, we were disappointed with this news until we spoke with Dr. Soni this afternoon. He explained that her white blood cells are doing fine. They are just "busy" going where they are needed to fight infection (mouth, throat, lungs etc.). As a result, there are actually fewer white blood cells available in her bloodstream when the labwork is done. Now that we understand that bit of information, we are not in such a hurry to "see" the counts recover on paper. We actually prefer that those cells are busy helping Brooke ...the labwork and even home can wait until Brooke feels better.

Thank you for your continued prayers and kindness. You have lifted our spirits more often than you will ever know!

Love,
Bryan and Stephanie

Friday, September 17, 2004 9:20 PM CDT

DAY +11: We have heard, "Brooke will turn the corner soon" so many times. Unfortunately, Brooke just cannot seem to find that corner. Everyday has continued to present its own set of issues...some improvements, some setbacks.

Monica (nurse practitioner) came into the room to start the day. She said that the latest chest x-ray (she seems to get one every day) continued to show fluid on her left lung. A chest CT scan was ordered for today. Brooke's heart rate and respiration rate have continued to run high, and Monica wanted to rule out infection or other respiratory problems. Around 2:00 transportation came with a wheelchair and two securtiy guards. To limit the risk of infection, all of the hallways and elevators had to be completely clear before Brooke could pass through. She was treated like the Queen of England. No final results are available yet, but the resident on call is going to try and find the preliminary results tonight if he can.

Brooke's stomach has been a little better throughout the day. The fentanyl dose was reduced again today, so we are hopeful that her stomach pain will decrease again tomorrow. Usually, her stomach pain precedes a mucositis "eruption" and today we only had two really nasty bouts.

All day Brooke's fever was under control until tonight when they dosed Albecet (antifungal). Some of the side effects of Albecet include fever and chills. Within minutes, Brooke began to shake, her temperature went to 101.3, her heart rate went to the 180's and her oxygen levels dropped to the 80's. Kristen (Brooke's nurse) gave her some Demerol and her chills went away pretty rapidly and her heart rate dropped to the 160's. We tried to reposition Brooke to increase her oxygen level, but ultimately Kristen had to put her on "blow-by" oxygen. Brooke is not happy about it, but her oxygen levels are much improved (97).

The only other significant change in Brooke's care today was a recommendation by Monica for Brooke to get out of her bed three times a day, for an hour each time. Brooke almost made it today. She did sit up in a chair this afternoon and watched a Barney video just before the CT scan. Then late this afternoon, we tried to convince her to play on the computer. She said that she was too tired. Instead she stood beside the bed and watched Mom break in the new "Nemo" on the computer for an hour! She is soooo stubborn. Tonight she had planned to play Nemo herself, before the Albecet chills, but that plan had to be canceled for tonight.

Brooke's white blood cell count was 0.149 today and her ANC was "79". We really think, hope and pray that her counts are on their way back up. That will help her more than anything else. Come on white blood cells...Brooke needs you!!

Until tomorrow...

Love,
Bryan and Stephanie

Friday, September 17, 2004 0:41 AM CDT

DAY +10: Overall, Brooke's mucositis has improved again today, but she has still had difficulty getting her pain and fever under control. If you asked Brooke, she would tell you that now her stomach and lips are hurting, but her mouth and throat are starting to feel better.

Pain control has been a big issue from admission. Over and over, we have been told there is no upper limit to the amount of pain medicine she could receive. She has been on fentanyl and it has helped tremendously. However, for the past two or three days, Brooke has continued to complain of more and more stomach pain...so we asked them to increase the fentanyl dose to help her. Now Dr. Cheerva believes that Brooke may have too much pain medicine on board, and it is causing her stomach to cramp. They have decreased her fentanyl dose today and added mylicon drops. Now we will watch and wait to see if that will help her stomach pain. Crazy how it works...her pain medicine may be causing her more pain!

Tonight, to insure that there was not anything unusual going on in Brooke's stomach that was causing the pain, an abdominal x-ray was ordered in her room. The resident came in to tell us that the results looked "normal," so Dr. Cheerva's theory on the fentanyl may be correct...we hope so.

Additionally, Brooke's fevers have continued and the blood cultures have come back negative. This is a little unusual at Day +10. So, in case there is some type of fungal infection that we did not have coverage for already, they have added Ablecet...another antifungal agent, to what she was already taking (voriconazole). Monica explained that although she believes that the fevers are probably associated with her mucositis, standard bone marrow transplant care would call for this addition to be sure that nothing is being missed.

Although Brooke was uncomfortable for most of the day, she did manage to calm down this afternoon. Jill (Brooke's ultrasound technician and new friend) came to the room to do "Reiki". We had never heard of Reiki until Jill introduced it to us in July. It essentially is a relaxation technique that is designed to enhance healing through energy transfer. We can't speak to the healing just yet, but Brooke was certainly relaxed...she fell asleep and she loved the soft music. Seriously, though Reiki has been endorsed by the American Cancer Society and Jill is wonderful enough to volunteer her time and talent to the children at Kosair.

After Reiki, Brooke played LIFE on the computer against Leslie (her nurse). Brooke would want you to know that she beat Leslie by 240 dollars. Also, Brooke had a special visitor from Richmond, KY tonight...Aunt Sylvia. Although Brooke was getting ready for all of her nighttime jobs, they had a nice visit. Brooke obviously loved the time they spent together, because after Aunt Sylvia left, Brooke said, "I want her to spend the night and see me again tomorrow." Too sweet!

Until tomorrow...

Love,
Bryan and Stephanie

Wednesday, September 15, 2004 10:25 PM CDT

DAY +9: Brooke again seemed slightly improved over yesterday.

Her mucositis was still a problem, but the "episodes" were less frequent and a bit easier on her today. Leslie (Brooke's nurse) said that the inside of her mouth looked much better...it was mostly all white inside, not red, and that was good. Brooke told us at one point today that the inside of her mouth and throat didn't hurt anymore, but her lips and belly did. She also seemed to have more energy and was a little more willing to talk today. For the past few days, we have been lucky to get a nod from her in response to a question or an occassional "Ughhh" when something was hurting. Today she did respond and even started a few short conversations.

On the down side, her fever continued all day and reached a high of 103.4. Her temperature spiked right after her red blood cell transfusion this morning and remained high tonight. Dr. McKenny (nephrology) increased her fluids this afternoon in an attempt to increase her urine output and to keep her well hydrated. Although there were several "issues" to manage (fever, blood, and urine output), there were no surprises and nothing that was alarming. Most of these will improve with time and an increase in her "counts". Today her white blood cell count was still very, very low at 0.039 (normal is 5.5-15.5) and her ANC was only "17".

Brooke's highlight of the day was a visit from Dad's mom, "Grandma". She came down this afternoon from northern Kentucky and was able to visit for a few hours. Brooke really enjoyed her company today, because she has not been able to see Grandma for awhile. Unfortunately, "PaPa" suffered a "minor" stroke on August 27th and she has been very busy taking good care of him. Physically he is doing well and is able to walk and dress himself etc., but he is struggling with some of his speech. He is expected to have a good recovery, but he will be working very hard over the next few months...just like Brooke!

Needless to say, 2004 has presented many challenges to our family. Although we have had our "moments", on the whole we have found that the road we have traveled has forced us to care, support, love, and pray for each other in ways we never had before.

Again, thank you for your continued prayers for Brooke and for PaPa too!

Love,
Bryan and Stephanie

Tuesday, September 14, 2004 9:33 PM CDT

DAY +8: Brooke seemed to feel a little better today.

Last night was a challenge. At 3:00 AM we were discussing increasing her pain medication to a higher level because she just could not get comfortable. Angie (Brooke's nurse) did give her two additional bolus injections of her pain medication throughout the night and that seemed to help. It took until approximately 4:30, before Brooke began to rest well.

Unfortunately, the mucositis was bad throughout the night and into the morning too. Brooke was clearing large amounts of blood-saturated mucous very often and it was obviously painful to her. It was very difficult to watch her strain so much and by morning Mom was ready for the reinforcements...in came Grandad and then Dad. Around 10:00 this morning Kasie (Brooke's day shift nurse) started her platelets which helped to slow the blood content in the mucous. Tonight there seemer to be very little blood at all, and she didn't have to strain so much to clear her throat.

All of the doctors' comments today were encouraging. Dr. Kenney (nephrologist) said that he was very happy with Brooke's kidney function and he was not going to make any changes to her medications. Today her BUN was 17 (normal is 7-18) and her creatinine was 0.8 (normal is 0.5-0.8). YEAH! Dr. Cheerva and Dr. Soni both continued to say that Brooke is doing well and to just wait two or three more days and the mucositis will improve and she will feel better. Brooke even agreed tonight that she might feel a little better than yesterday.

Despite all that Brooke has been through there have been very few complaints or sad faces. The biggest difficulty of late has been trying to get her to cooperate and complete all of her tasks for the day...mouth care twice a day, physical therapy each morning, proper skin care after each trip to the bathroom, weight twice a day, measurement of her abdomen twice a day, temperature and blood pressure every 1-4 hours, glutimine twice a day, Tylenol as needed, and a very extensive bath (it takes thirty washcloths!) each evening.

Brooke has begun to mention in the past couple of days that she would like to go home. We tend to like that kind of thinking and have started a "When Will Brooke Come Home?" game in her room. Each person who wants to play, places a dollar bet and then writes their name on the calendar choosing the day that they believe she will leave Room 731 behind. In the event of a tie, Brooke gets to choose the name of the winner from a hat. The game was actually "invented" during her first few days at Kosair, but she lost interest as she started feeling bad. Today, however, she took a few new entries and we thought that was a good sign. We will keep you posted on the winner. As far as Brooke is concerned, it doesn't matter who wins... all that matters is that she gets to go home!

Tonight we are so thankful for her improvement and hopeful for an even better tomorrow!

Love,
Bryan and Stephanie

Monday, September 13, 2004 11:35 PM CDT

DAY +7: Brooke still feels pretty lousy, but from a medical standpoint she is doing very well.

There were several small improvements today. First, Brooke was much more alert during the day. Dad took the day off from work, and they spent some time watching television together. This was good because for the last couple of days her room has had to be QUIET. She has been, how shall we say "grumpy", and noise has not been in her plan. Next, her temperature stayed around 99 most of the day and she didn't require any Tylenol...they generally give Tylenol only when the temperature rises above 100.5, so she was under the cutoff. Third, the nephrologist is satisfied that her kidney function is improving. Today her creatinine was 0.9 (normal is 0.5-0.8) and her BUN was 24 (normal is 7-18). Lastly, she participated in physical therapy with Alisha today. They did some upper and lower body exercises. Then because Brooke had done so well, Alisha made Dad do ten jumping jacks!

On the down side, here we go again...MUCOSITIS! Brooke has really struggled with this. Her throat and mouth are sooooo sore. She told us today that she did not want to talk...not a good sign for a Clemons' family member! One look inside her mouth and you would know why. The inside of her mouth is inflammed and filled with sores and she had at least seven "episodes" of bigtime mucositis today. In Brooke's words, "Ouchy, ouchy, ooochy, ooochy". Honestly, if Brooke could have avoided this "side effect" (and some kids do) the transplant process would not have been that bad to this point.

Tomorrow we expect that Brooke will receive both platelets and red blood cells which is very common during transplant. In fact, Brooke has already had three platelet transfusions and one red blood cell transfusion during this stay. At the risk of going on a soap box, if you really wanted to help somehow...give blood or platelets. Not just for Brooke, do it for all cancer patients. It is just such a big part of their treatment.

Looking further ahead, we are anxiously awaiting engraftment of her new cells. Brooke's white blood cells reached a low of 0.007 (normal is 5.5-15.5) on September 8th. Today, her white blood cell count was 0.047 and her ANC was "16". Dr. Cheerva even mentioned the magic word today...HOME. One of the exit criteria is that her ANC must be above 500 for three consecutive days. We are certainly a long way from there, but she said it is possible that Brooke could do it by the end of next week. Even if Brooke didn't get discharged that soon though, her comment certainly did brighten our day. While there is no guarantee of a discharge date...anything could happen...what it did mean is that Brooke is doing great today and we have learned to appreciate how important that is.

Thanks again for all of your love and support.

Love,
Bryan and Stephanie

Sunday, September 12, 2004 11:26 PM CDT

DAY +6: Last night, Brooke slept very well. She did get up to go to the bathroom four times, but she seemed comfortable at rest. The highlight of Brooke's day was a visit from MomB and Carmen, her favorite babysitter. Unfortunately, Brooke was too tired to play any games with Carmen today. However, when it was suggested that Carmen might go home because she was resting...boy, did we get a reaction! Brooke immediately pointed her index finger to the floor of her room and said, "No, I want her to stay right here!" And stay Carmen did...for nearly four hours.

The mucositis is still very severe. At one point yesterday, Brooke strained to clear her throat. We thought that it was just more of the same. Actually, what came up was a ten inch strand of tissue...part of the lining of her esophagus we were told. The resident stopped by and he said he has a whole new respect for the kids when they say that they have a "sore throat." Today, there was nothing quite that severe, but she still had her moments. We will be so relieved when this stage is behind her. Angie, Brooke's nurse, talked with Monica (nurse practitioner) tonight by phone. Monica said that Brooke is at the most difficult stage of the transplant. She is worn out from all of the chemotherapy, the side effects are at a maximum, and her body is trying to engraft the stem cells.

Tired as she may be, she still made it to the computer for about twenty minutes tonight while we changed her bed linens. Although she struggled to keep her eyes open, Strawberry Shortcake really entertained her. It was so good to see her out of bed for something beyond a trip to the bathroom or a chest x-ray.

At this point, we are anxiously awaiting the day when the new stem cells engraft and they begin to help her recover. Thank you for checking on Brooke!

Love,
Bryan and Stephanie

Saturday, September 11, 2004 9:36 PM CDT

DAY +5: We have told the nurses and doctors that Brooke is our first transplant patient and it is hard to have "perspective" sometimes. Visibly there have been changes, she is tired most of the day, she struggles to go back and forth to the bathroom, she often whinces in pain, and yet by transplant standards at Day +5 they say she is doing great!

This morning, Alisha (physical therapy) came to visit with Brooke. Brooke was not interested, but they planned for an afternoon appointment to try again. When Alisha left, Julie (Brooke's nurse) could see that we were disappointed that Brooke didn't participate. The conversation that followed went like this:

Julie: "Do you know how well
Brooke is doing?"

Mom: "No, what do you mean?"

Julie: "Well most patients at Day
+5 are not even getting
out of bed to go to the
bathroom by themselves.
Brooke takes herself to the
bathroom AND she has
already been on the
computer this morning. She
is doing really, really
well."

More encouraging news came later. This afternoon, Dr. Cheerva (oncology) and Dr. Shoemaker (nephrology) provided an update on Brooke's progress. They said that they have been able to stabilize her renal function and the labwork is trending in the right direction now. Additionally, they lowered the dose of her antiviral agent that can be tough on the kidney...YEAH! Dr. Cheerva said that Brooke is doing "AWESOME" for DAY +5.

Later in the day, Brooke requested to play on the computer. She lasted for only 30 minutes, but with our "new perspective" we were very, very happy.

Brooke appears to be progressing very well. However, one of the lessons we have learned during the last eight months is not to get too high or too low... Brooke still has a long road to travel. So for tonight we are VERY THANKFUL for the success of the day, but we must also continue to pray that Brooke will find many more years of success ahead.

Love,
Bryan and Stephanie

Friday, September 10, 2004 10:50 PM CDT

DAY +4: Brooke had a very difficult night last night. The mucositis (breakdown of the lining of the mouth and throat) continued to get worse. Dr. Cheerva reminded us that the mucositis must "run its course" and expect it to get better around Day +10.

Last night, Brooke spent much of the evening trying to clear her throat. As she slept you could hear the "rattle" in her throat until she was able to cough it up. She went through what seemed like 100 washcloths wiping and clearing her mouth. Her pain was significant enough that the resident was called during the night for approval to increase her pain medication. The resident also ordered an abdominal and chest x-ray ..at 3:00 AM. Brooke was miserable and she did not enjoy the x-ray procedure in her room at 5:30 AM. The good news is that the resident did increase her pain medication and Brooke was able to rest better afterwards.

This morning the mucositis continued and her fever returned again. The fever was easy enough to control with a few doses of Tylenol, but Brooke needed a new plan for the mucositis. Thankfully, we convinced Brooke to try a suction device (like at the dentist's office) to clear her mouth. That has helped tremendously. Where Brooke had rubbed her mouth so much and so hard, her lips had begun to crack and were painful too. The suction has limited how many times she has wiped her mouth and her lips already look a little better tonight.

With the increase in the pain medicine, Brooke seemed more comfortable during the day and rested better. She played Strawberry Shortcake on the computer with "Loddie" during her visit today, played a quick game of Blues Clues cards with Tracy and Mom, and enjoyed listening to "The Cheetah Girls" CD ("BUT Q-U-I-E-T-L-Y MOM" she said). She still spends most of the day asleep or in bed, but we are thankful for any activity that she can add to her day.

Dr. Soni also stopped by today to check on Brooke. He said that she is doing "fine...just what we would have expected." He also advised us to try and be patient until her cells begin to recover. It is always great to hear that the doctors are satisfied with where she is from a medical standpoint, because it can sure be tough to watch.

We know that we cannot magically fast forward through the next week, but we would sure appreciate your prayers for Brooke's continued strength. We are convinced that your prayers have helped her get this far.

Love,
Bryan and Stephanie

Thursday, September 9, 2004 10:30 PM CDT

DAY +3: Dr. Cheerva said that Brooke is "slightly improved" today.

The good news:
1) Brooke's temperature stayed in normal range all day, WITHOUT Tylenol, until 7:00 tonight. One dose, and her temperature was 98.4 at bedtime.
2) Her heart rate also improved, staying in the 130-140 range tonight, compared with 150-160's last night.
3) Her blood pressure which had been on the borderline of being too low, increased this afternoon and has stayed up this evening.
4) Monica said that the sores in her mouth actually look better today.

Areas for improvement:
1) Brooke continues to be very tired most of the day.
2) Her speech can be difficult to understand at times, because her throat is so sore that it hurts when she talks and swallows.
3) Sores are now seen in the folds of her skin..under her arm and in the groin area.

Additionally, some changes were made today to help Brooke with her kidney function. Dr. Shoemaker, nephrologist, changed the frequency of her antibiotics. (She now receives tobrmycin only twice a day and cefapime and vancomycin only once a day.) Also, he added lasix and albumin to increase her urine output even further. We are hopeful that these changes will result in improved lab results (creatinine and BUN) for Brooke within the next couple of days.

Today Brooke showed the first signs of real frustration with the "tasks" of the day. She resisted doing her physical therapy, mouth care, oral medicines and neupogen shot. Who could blame her?...She has felt lousy. Ultimately, she did complete them all, but not without a SHORT fight. At bedtime, when it was time for her neupogen shot, she began to fuss...Grandad ALWAYS does the shot and he was here..but Brooke was not interested in doing it then. We told her she could do it now, or wait and let the nurse do it after her bath. She sat up in an instant, slammed her fist on the bed and said, "FINE!" It was a hard to be so firm with Brooke today, but we tried to remind her that all of these steps are designed to get her home more quickly.

Please continue to pray for Brooke and all of the kids on 7 West.

Love,
Bryan and Stephanie

Wednesday, September 8, 2004 10:56 PM CDT

DAY +2: Now we know where the saying, "If it's not one thing, it's another" comes from.

The good news is that Brooke's fever and heart rate seem to be improving. Yesterday her fever did not break at all. Last night her temperature rose to 103.4 and her heart rate climbed back to nearly 200 beats per minute. Heather, Brooke's nurse, was determined to get her cooled off. She even made ice packs and put them in the bed with her. Surprisingly, Brooke did not complain...she must have felt that bad. This morning, her temperature decreased to 101.5 and her heart rate came down some too. Throughout the day, Brooke gradually seemed able to keep her temperature down longer and longer before needing more Tylenol. Tonight as she went to bed her temperature was 98.8 and her heart rate is back down to the 150-160's.

On the downside, Brooke has three new issues:

1) Her kidney function is compromised - Dr. Shoemaker, nephrologist, was called in for a consult. Brooke's urine output had become very low. To increase her urine output, he put her on a low dose of dopamine. This has increased the amount of blood going to her kidney and now she is back on track tonight. He said that the changes in kidney function were "inevitable" because of the antibiotics she is taking. He does not forsee any long term effects based on the current situation. Brooke will have to remain on these antibiotics until her "counts recover" (estimated Day 10 to Day 14).

2) Her blood pressure is low - At this point, the doctors have not chosen to do anything about this, but they will be watching her very closely. If the pressures drop any more, an increase in the dopamine dose may be effective in increasing her blood pressure too. However, the part that concerned us was Dr. Cheerva explained that an environment where the kidney function is low, the blood pressures are low and there is a fever, CAN be predictive of a "big infection" down the road. Only time will tell, but we will hope for the best and prepare for the worst on this one.

3) Her NJ tube is gone - Early this afternoon, Brooke gagged on some of the mucous in her throat and strained to clear it. As she worked to get the mucous out, she also forced the NJ tube up her throat. The end of the NJ tube that was on her nose was taped securely in place, but the other end from her stomach was coming up in her throat and the nurses were forced to pull it out. Brooke said, "That feels better!" We assumed she would have to go back quickly to have another one put in, but Monica (transplant nurse practitioner) said she would wait. At this point, because the mucositis (mouth sores and difficulty swallowing because of the breakdown of the lining of the mouth and throat) is pretty severe, the decision was to just wait and see. To place the tube again right way could have forced more bacteria into her bloodstream, which would have increased her risk of infection. Monica said they would consider another NJ tube around Day 14.

For the most part, Brooke has rested today. The vomiting of a few days ago, has been replaced with episodes of coughing mucous from her throat. Some diarrhea continued today, but it is manageable and predictable. When she is given a new dose of her antibiotic, she has to go to the bathroom.

Brooke maintains her personality and spunk through it all. This afternoon, when she had been resting for a long period of time, "Crazy Tracy" (RN) stopped by to see her. Brooke appeared to be fast asleep and the room was dark. No one expected her to say a word, but Brooke sat up in her bed, made a hand gesture of the letter "L" in front of her forehead and said, "Are you ready to be the "L"oser?" Tracy understood...she needed to play a game with Brooke and she must lose. Tracy promised to return at the end of the work day. At around 5:00, Tracy returned. To add to the fun, Brooke's friend from Childlife, Erika, stopped by to check on her, and then Brooke had two friends to play with. Brooke started out pretty strong, but toward the end began to tire. Mom and Leslie (Brooke's nurse) watched and delivered drinks to Brooke on command. At any point in time she may have five drinks open...water, Big Red, Sprite, Orange and Grape seem to be the favorites. Oh, and for the record, Tracy and Erika did lose.

On the whole, Brooke should feel and rest better tonight. Dr. Cheerva told us to hang in there, and to expect things to level out in about a week IF everything goes as planned. We have been so proud of Brooke through all of this...she is the toughest kid on earth!

Love,
Bryan and Stephanie

Tuesday, September 7, 2004 9:26 PM CDT

DAY +1: We can't say that the doctors didn't warn us about days like this...we had just hoped it wouldn't be so soon.

At 8:15, Angie (Brooke's nurse) came in the room to tell us that Brooke would go to radiology at 9:00 for her NJ tube. This was Brooke's first trip outside the walls of room 731 since her arrival on August 31st. To ensure that the risk of infection was kept at a minimum, security led the way, completely clearing the hallways in advance of Brooke traveling through. Once she arrived at radiology, she was prepped, the doctor started the procedure at 9:15, and it was completed by 9:35. Brooke fought the tube at first and it took three of us to keep her still, but then she resorted to questions like, "When are we going to be done?" The experience was not a pleasant one, but at least it was quick. Following the placement, Brooke went directly to x-ray to confirm that the tube was in exactly the right position. Before 10:00, Brooke was back in her room.

By 11:30, Brooke's heart rate had climbed steadily to 180. Angie checked her temperature and she had "spiked." Her temperature was 101.2. The nurses (Nicole pitched in too) worked quickly and professionally. They drew her cultures, started an antibiotic (cefepime), and gave her tylenol in 45 minutes. While none of this was unexpected, as a parent you always hope that maybe your child will be the one that doesn't get a fever. Dr. Bertolone, the senior partner in the group, told us that he had only seen one transplant patient NOT get a fever. Now we know that Brooke won't change that statistic.

When Brooke's fever did not break right away, Dr. Cheerva added a second antibiotic (vancomycin) and increased her fluids. Still not impressed with Brooke's response late in the afternoon, a third antibiotic (tobramycin) was added. Brooke's heart rate was variable all day, running anywhere from the 160's to a high of 202 beats per minute. Her temperature fluctuated from 100.5 to 102.3 and her blood pressure was low. Many of these symptoms persist tonight, but appear to be slightly better. Leslie and Heather, Brooke's afternoon and night nurses, tell us that this is the standard "cocktail" of antibiotics used. Brooke's fever still has not broken, but she seems to be resting comfortably. Undoubtedly, she will be watched very closely and we will hope for some improvement through the night and into tomorrow.

This is Brooke's toughest hurdle so far. Please continue to pray for her.

Love,
Bryan and Stephanie

Monday, September 6, 2004 10:06 PM CDT

STEM CELL DAY: Everything today went according to plan. At 8:00 this morning, Veronica (Brooke's nurse) increased her fluids in preparation for the stem cell infusion. By 10:00 Veronica called the bone marrow lab to deliver the first "run" of cells. It was a very coordinated effort because as soon as the cells were thawed, they had to be infused quickly. Two syringes were delivered in a small cooler, and by 10:05 Monica (BMT nurse practitioner) had begun the infusion. Daddy, Grandad, Morgan and Austin watched through the "plastic wall."

Monica slowly pushed the stem cells through Brooke's central line, Veronica monitored Brooke's heart rate and blood pressure, and Mom held the bucket. The smell was bad...the preservative (DSMO), used to keep the cells fresh, has a really bad odor. Some people describe it as smelling like asparagus or garlic. Unfortunately for Brooke, as the cells were infused she also tasted the DSMO - Yuck! Within seconds, Brooke began to vomit. On top of that, the cells were so cold, and they were infused through her central line to the heart. As you would expect, her heart rate dropped pretty quickly. When the rate was too low, Monica had to take a break from the infusion. In about ten minutes, the first "run" was complete. Then they gave Brooke about a ten minute break and Veronica called for the second "run" of cells. Two more syringes were delivered and the process was repeated until all the cells were infused by about 10:35.

Following the infusion, Brooke just wanted to turn down the lights and take a break. Throughout the day she battled with intermitent vomiting and dry heaves. She has complained that her throat and mouth are sore...signs of mucositis. In an effort to make Brooke more comfortable, the doctors have increased her mouth care medicines and even started her on a PCA (Patient Controlled Analgesia) pump for pain. Tonight was the first night of TPN and lipids to boost her nutritional status. Despite the tough parts of the day though, Brooke was able to work in some time on the computer and she watched a little television with Dad too.

Unfortunately, there is no rest for the weary. Brooke will go to radiology in the morning to have an NJ tube placed. The theory is that if they can supplement the intravenous feeding (TPN and lipids) with nutrition to her stomach directly, she may recover her appetite more quickly and have fewer side effects.

Again, our heartfelt thanks for your support and prayers today.

Love,
Bryan and Stephanie

Sunday, September 5, 2004 10:19 PM CDT

Day -1: What a terrific day for Brooke! Her heart rate is now running in the 120's and she has played all day long.

Mom B was the first visitor of the day and "Loddie" followed. Brooke enlisted them both in the game-playing right away with a Blue's Clues card game, Spongebob Uno and coloring on fuzzy posters. Daddy was the next victim. He called after church to see if she wanted anything and she asked him to bring, are you ready for this...the computer from home, and he did. Picture Bryan, Morgan and Austin wheeling in an entire computer station on a Kosair wagon, desk and all. Before it could be brought into her room though, it had to be completely wiped down and sterilized. Morgan and Austin put on their gloves, got the Wet Task wipes and cleaned it very well. Within about 30-40 minutes of arriving, Brooke was nestled in front of her computer playing Strawberry Shortcake and LIFE.

The "toughest" part of the day came next...she watched the UK-UL football game. Brooke was not impressed with Wildcats today. Thankfully, "FeFe" stopped by during the game with some Halloween decorations for the room and Brooke was distracted from the football. Then after some board games and puzzles, she was back on the computer. The night ended with a quick visit from Barbara and Harold Marshall who had come in for the football game today.

Tonight, we anxiously await the new stem cells. It has been a very long road since January 13th and tomorrow marks another huge milestone in her treatment. Bryan, Morgan and Austin are spending the night in the Ronald McDonald room so they can be here in the morning when the cells are infused. It feels like Christmas eve!

Please pray that the high dose chemotherapy has wiped out every cancerous cell from Brooke's body and the new stem cells will give her a great new start! Thanks again for all of your support and encouragement.

Love,
Bryan and Stephanie

Saturday, September 4, 2004 9:58 PM CDT

Day -2: Brooke's day started about where she left off. She was either awake and sick at her stomach or asleep and comfortable.

Mom B came to visit this morning and Brooke was determined to enjoy some time with her. After getting sick, the nurse asked Brooke if she would like some more "bellyache medicine." Brooke said, "No"...she knew if she took it, she would be sound asleep. We knew if we were going to do anything fun, we better act quickly. Without the medicine, it was only a matter of time. Brooke knew that too and asked us, "Who wants to be the loser?" which is for code for who wants to play a game, because she always wins. We played several games of Spongebob Uno and to no one's surprise she won most of them. Next, we started to color on some "fuzzy posters" together, but it came to an abrupt stop when she got sick again. The nurse brought in some more medicine and Brooke was asleep very quickly.

After Austin's football scrimmage, Bryan brought the other kids to visit. They all came to check on Brooke and then went to the Ronald McDonald room down the hall. With a television, computer, Nintendo and food they were happy and comfortable. With the restrictions of only two visitors at a time and a maximum of five visitors per day, this room has been wonderful for our family. It gives us a chance to rotate in to see Brooke and be with the other kids too.

By 6:00, Brooke got her "second wind." As she woke up, she wanted to watch her Annie movie again. Just as the movie started, Linda and John stopped by for a visit and Brooke was able to really enjoy her Saturday night! Grandad stopped in a little later and he caught the second movie of the double feature, Jungle Book. By 9:15, she was in bed, but it was a very nice three hours.

Brooke's heart rate is still high (140-150's), but is otherwise doing fine. She actually looks good. Austin commented that it looked like she had gotten a suntan...the nurses told us that one of the chemo drugs (Melphalan) causes the skin to darken in color. However, the reality is that Monday when they infuse the stem cells, it gets very tough. Apparently, the preservative that the cells are stored in has a very bad odor and Brooke will really battle with vomiting and diarrhea at that point. Then fevers are likely to set in. After talking with Amber, Brooke's nurse tonight, she suggested that we do our best to really enjoy tomorrow. We plan on doing just that!

Thank you for your prayers for Brooke!
Love,
Bryan and Stephanie

Friday, September 3, 2004 10:04 PM CDT

Day -3 is now complete. At 6:45 PM, Brooke's nurse, Veronica, turned off the last of the high dose chemotherapy. AMEN! Brooke will "rest" on Saturday and Sunday and her new cells will be infused on Monday.

Last night, Brooke continued to struggle with bouts of vomiting. The Phenergan continued to be helpful, but around 6:00 AM she became very restless and her heart rate escalated into the 170's. Tina, the nurse for the night, explained that it was likely a reaction to the Phenergan. To be sure, an EKG, heart echo and cardiology consult were ordered. Good news...nothing unusual was seen on any tests, but her heart rate is still high tonight in the 140-150 range. We are hopeful that it will resolve itself tomorrow.

To replace the Phenergan, Brooke received Ativan today. She did pretty well, but it also made her very tired. She was disppointed that she slept through physical therapy and school today. However, by 4:00 this afternoon, she did start to feel a little better. She watched a Barney video and we started to work a puzzle before she needed to take a break. After a quick nap, she finished her night with a bath and the Cosby show.

We also had a nice visit with Dr. Soni. He is Brooke's primary oncologist and we have come to trust his clinical judgment and his instincts. We discussed many things relative to Brooke's treatment today, but the most important point he made was that he is "optimistic about Brooke." We love his confidence and we pray that he is correct.

Love,
Bryan and Stephanie

Thursday, September 2, 2004 10:35 PM CDT

Day -4 is now complete. As expected, Brooke's side effects to the chemotherapy have begun to increase. Still no appetite, little drinking and much, much more vomiting. They increased her Zofran dose and added Phenergan today to try and help settle her stomach. The Phenergan did a nice job slowing the vomiting, but it really made her tired. She spent most of the afternoon asleep, but generally more comfortable.

Brooke's highlight of the day came in the morning before the chemotherapy began. Alisha, from physical therapy, came to visit and Brooke had quite a workout. "Crazy" Tracy (RN) and Mom joined in the fun too...Jane Fonda need not worry. Following "aerobics", Ms. Leslie (Brooke's teacher) came to the room, but Brooke was already starting to feel quite tired. Too bad really, because Brooke enjoys school and she loves Ms. Leslie.

After dinner, Bryan brought Morgan and Austin to Kosair to see Brooke. After a quick visit, they went to the Ronald McDonald Room (a room down the hall for families of transplant patients that has a small family room/kitchen area, bathroom and bunk beds) to work on their homework. It is so nice that this room is available. It may not be anything fancy, but it sure does help to have it here.

One last bit of good news...today Brooke's kidney function was improved. The results of the creatinine clearance test showed that her function had increased from 44 ml/min yesterday to 64 ml/min today. Despite the fact that the numbers were better, that is still a "low value" and all of the doctors agreed to continue to hold the carboplatin. As parents, we were just encouraged to see her kidney bounce back a little.

Please continue to pray for Brooke to be strong. She has done amazingly well so far, but the most difficult days are still ahead.

Love,
Bryan and Stephanie

Wednesday, September 1, 2004 10:39 PM CDT

Brooke has continued to be a trooper. The events of today were more like what we had been prepared for. She vomited six times, ate nothing at all and drank very little too. "To be expected" we have been told. Of concern, was Brooke's kidney function. In an effort to monitor her kidney function on a daily basis, we did a 12 hour creatinine clearance test (We collect her urine for 12 hours and send it to the lab for comparison with her bloodwork). The results showed that her kidney function that had been 97 ml/min in Cincinnati on Tuesday, is 44 ml/min today. Based on those results, Dr. Cheerva commented, "I'm convinced...no more carboplatin." However, Brooke's serum creatinine levels remain in normal range for her age, so the doctors believe that there shouldn't be any long term complications. Thankfully, they are not taking any chances with her kidney...for that we are so very grateful!

On the positive side, Brooke was more alert today. She napped for only about two hours today compared with about six hours yesterday. There were also several happy moments...watching "ANNIE" on her DVD player and singing "It's a Hard Knock Life" and "Tomorrow" with the cleaning ladies, playing Chutes-N-Ladders with Alisha and Elizabeth from Childlife, playing Adventure Park with "Crazy" Tracy(RN), and visiting with MomB, Daddy, Morgan, Austin and Kristen tonight...even through the plastic wall. Grandad got his visit in during the day - we all need our Brooke fix!

Now she has completed two days of the high dose chemotherapy. Thursday and Friday will complete her chemotherapy treatment, and she will "rest" on Saturday and Sunday. On Monday, she will receive the stem cell infusion to "rescue" her body and help her counts to recover. The doctors refer to her admission day as Day -6. The chemo runs a total of four days (Day-6,-5,-4,-3), the days of rest are Day -2,-1 and the infusion or "transplant" day is Day 0. After the transplant, they will begin to count upward...Day +1, Day +2 etc. Brooke's day for the transplant is actually Labor Day...it will certainly be a Labor Day we won't soon forget!

Again, we would like to tell each of you how much your acts of kindness and guestbook entries have meant to us. Your words of encouragement have often provided us strength when we have needed it the most. Thank You!

Love,
Bryan and Stephanie

Tuesday, August 31, 2004 9:35 PM CDT

Today went very smoothly. We arrived at Kosair at 8:00. By 8:30, Brooke's nurse, Elaine, had weighed and measured her, taken her vitals, and started her pre-chemo IV fluids. Then the nurse practitioner, Monica, came in for her daily examination of Brooke from head to toe. A chest x-ray in the room followed. Between evaluations and testing, we managed a few cartoons, a game of Monopoly Jr. and some card games too. Grandad loaded in the "gear" for the stay and wiped down each item before it entered Brooke's room.

After two hours of fluids, Elaine started zantac, benedryl and amifostine to prepare Brooke for the high dose chemotherapy. The zantac and benedryl help to prevent nausea and vomiting. The amifostine has the ability to protect certain normal body cells/tissue against damage from chemotherapy and radiation (i.e. kidney and hearing damage with carboplatin). Then the benedryl took effect and Brooke became very, very tired and the game playing came to a halt. Following the amifostine, Brooke was given the first half of the chemotherapy for the day...Melphalan for ten minutes and carboplatin for one hour. The same routine was followed later in the afternoon, and by 5:15 the second half of the chemotherapy was started...Cytoxin and VP-16, each for one hour. Brooke slept for most of the afternoon.

By 6:00 she began to wake up, and just in time because Bryan brought Morgan and Austin to "visit". Unfortunately, the rules do not allow anyone under 12 to come directly into the room. They can stand just outside her room and talk to each other through the "plastic wall." Brooke's room is very different. From the inside of her room looking out, there are actually two walls separating her from the nurses' station. The wall closest to Brooke is made partially of heavy plastic with a regular door that has a large glass panel. The second wall separating Brooke from the hallway is also glass...a glass sliding door. On top of that, the "transplant area" is separate from the rest of 7 West and not open to other traffic. Some people call these rooms "fishbowls" because you can look right in from the hallway.

Even though the visit was not what everyone is used to, it was important for the kids to see Brooke and know that she is alright. We had tears this morning as the big kids went to school and Brooke headed for Kosair. It was good for them to see her tonight. All in all, we are off to a nice start and hopeful that Brooke will continue to feel well.

Until tomorrow...
Love,
Bryan and Stephanie

Monday, August 30, 2004 10:45 PM CDT

GOOD NEWS! The results from the plasma GFR in Cincinnati confirmed that Brooke's kidney function is very good and the doctors agreed that she should receive all four chemotherapy drugs (as was the original plan). She will be admitted at 8:00 AM tomorrow morning to begin the high dose chemotherapy.

Early this morning we drove Brooke to the University of Cincinnati Children's Hospital. We arrived just before 9:30, quickly registered, and she was injected by 9:45. Unfortunately, they had to inject the fluid directly into her hand, but Brooke laid very still and didn't complain! Then the lab tech told us the rest of the story...return in two hours for a blood draw and then three more blood draws to follow at thirty minute intervals. We had no idea it would take so long. The good news was that even though the test lasted until 1:30, the blood was all drawn from Brooke's central line, so after the initial "ouch" she was fine.

After the test we drove straight home to await the results. At 4:00 we received a call from the nurse at Kosair that Brooke's kidney function was actually 97 ml/min. This was much higher than we had expected, but it made the decision to use the fourth drug (carboplatin) easy. Dr. Cheerva called later in the afternoon to confirm the results and explain some of the limitations of the test in Lousiville. After having discussed the discrepancies in the test results, we were comfortable with the decision to move forward with all of the drugs. We feel very fortunate to have such thorough and caring doctors managing Brooke's care.

It was a long day for Brooke, but it was fun too. We made a quick dash through the gift shop where she found a must-have "BROOKE" necklace...quite a treasure at five years old! We were also able to visit with her grandmother, two aunts and two cousins who live in the area between all of the activity at the hospital. It was such a nice break from all the waiting around. So all in all, the day went very well. Most importantly, her testing today did make a difference in terms of her treatment plan.

Tomorrow the real test begins!

Love,
Bryan and Stephanie

Friday, August 27, 2004 5:16 PM CDT

Brooke is officially on Delay #2. Her kidney funciton is still a bit of a mystery. The bottom line is that Brooke will begin her high dose chemotherapy on Tuesday, August 31st. What we don't know at this point is if she will be taking three chemo drugs (Melphalan, Cytoxin, and VP-16) or four chemo drugs (those listed, plus carboplatin). The doctors think that they need one additional piece of information, relative to her kidney function, to make that decision.

The story on Brooke's kidney function testing has been inconsistent and confusing. The picture GFR tests (Brooke lays on a table, they inject some fluid through her central line, and a camera registers how quickly the fluid goes through) has shown Brooke's kidney function to be low: 54, 69 and then again 54 ml/min on Tuesday. This is too low for the doctors to safely use carboplatin which can be hard on the kidney. The doctors say that generally the recommendation is for the functionality to be greater than 70 ml/min to dose this drug. So it appears easy...don't use it, right? Not exactly.

When she has done 24 hour creatinine clearance tests (collect Brooke's urine in a jug for 24 hours and compare against a blood sample)to measure her kidney function, the results have come back good at 79 and 103 ml/min. "Most doctors" will tell you that these results should be more accurate. To add to the confusion the first results for each test (54 for GFR and 79 for creatinine clearance) were obtained when Brooke had a fever and was taking multiple antibiotics a few weeks ago.

Ever cautious to preserve Brooke's kidney function and her quality of life, Bryan and I were prepared to begin the high dose chemotherapy today with only three of the four drugs. To our way of thinking, the logic was easy. We have one test showing good funciton, and one that shows not so good function. No one can be sure what is "real" for her kidney, so be conservative and careful. Go for the cure with three drugs on board, limit the stress on her kidney and turn it over to God...and accept that we have done all that we can do.

HOWEVER, last night and into today, three new bits of information have been introduced:

1) The local nephrologist explained that IF the fluid/"isotope" that was injected into her central line accumulated in her line and did not circulate through her kidney, THEN the results of the picture GFR would "not be accurate."

2) The University of Cincinnati has a state-of-the-art plasma GFR machine that uses peripheral blood draws to test kidney function. We could have an appointment there Monday morning.

3) Dr. Cheerva called a leading nephrologist in Chicago who confirmed a formula that he uses to estimate kidney function based on lab results. The expected value for Brooke using this formula would be in the mid 90's.

Based on the new infomation, we decided to postpone until we could make a more informed decision. Brooke will go to Cincinnati on Monday morning to be tested on the plasma GFR machine. The test is scheduled for 9:30 AM, we will get the results the same day and her treatment plan will be finalized accordingly. It looks like if the results come back low (50-60's)...easy, no carboplatin. If the results are in the middle (70-80's)...not so easy, we'll have to decide and if the results are high (90's or better)...easy, use carboplatin. Either way, she should be admitted to Kosair at 8:00 AM Tuesday morning.

So even though the last few days have been confusing and even stressful, we are convinced that everyone at Kosair is giving their best effort to maximize Brooke's care. That really is all that we can ask, and in the end we have accepted the fact that the final outcome is really out of our hands anyway. With that said, we would again ask that you continue to pray that Brooke will be cured.

Love,
Bryan and Stephanie

Wednesday, August 25, 2004 9:20 PM CDT

Late this afternoon, around 5:45 PM, we received a call from the Transplant Nurse Coordinator, Nancy. She asked if we had talked to Dr. Soni. I told her that he had not called us, but we would be interested in any information that she might have. The bottom line is that Brooke will NOT be admitted tomorrow for the start of the high dose chemotherapy as we had planned. Apparently, the blood test from Tuesday showed that her creatinine (which reflects her kidney function) is somewhat elevated. The doctors want to retest her kidney function again before she starts.

Now the plan is that Brooke will register at the outpatient registration tomorrow morning. They will run a GFR test and a blood test to further evaluate her kidney function and see if she is back in the "normal" range. Nancy seemed to think that they would probably admit Brooke on Friday, but we will have to see what they decide after the results on tomorrow's testing are back. Although we were a little disppointed at first by the change of plans, the reality is she only has one kidney. We definitely need to wait until her kidney is in good shape and ready to go. We are thankful that the doctors are being so careful. Brooke was fine with the news of the delay, glad to stay home another night, but she does say that she is looking forward to getting her "new cells."

Today was a fun day for Brooke. She had school with Ms. Leslie at 8:00 AM. Then she went out on a "lunch date" with MomB, Grandad and Aunt Sylvia at Austin's restaurant. Brooke loves those chicken fingers! Then Erika, Logan and Leisa came to visit after school and Kara came over to play tonight.

We were especially thankful that Father Chuck came to our house today to annoint Brooke and lead us in prayer. We all took great comfort in knowing that we have "formally" asked for Brooke's healing and for His strength to lead us. We are hopeful that Father Chuck's visit will not only help Brooke, but reinforce to the other children that God will protect Brooke through all that lies ahead and guide the doctors and nurses that care for her. Again we thank you for including Brooke in your prayers too!

Love,
Bryan and Stephanie

Monday, August 23, 2004 10:04 PM CDT

As expected, Brooke completed her testing on Thursday. We do not have all of the results yet, but we do know that her vision is fine. We hope to get some more information on her kidney function and pulmonary function test results tomorrow at Kosair. Brooke has her preadmission physical with the nurse practioner in the morning, and we assume that all of the information will be available then.

Friday, Brooke spent much of the day playing with her friend, Kara, across the street. It has been wonderful because Kara's school does not start until this Wednesday, and they have been able to spend a lot of time together while the other kids are back to school already. Friday night, the Merrifield's brought pizza over for dinner and Brooke was so happy to spend the whole night playing game after game with Carmen. Brooke just "lights up" when Carmen is around.

Saturday, Brooke had a nice day around the house. The weather was beautiful and she was able to get out and do some more bike riding and playing outside. Saturday night, MomB and Grandad babysat for the kids and Brooke approved of a DATE FOR MOM AND DAD! We went on the Belle of Lousiville for a 40th birthday celebration for six men from Holy Trinity. The night was gorgeous and it was fun to see so many people. What a nice party!

Sunday was the highlight of the weekend for Brooke. We finally made it to the long awaited destination of HOLIDAY WORLD! Brooke enjoyed everything about being at the park and she held up very well. We arrived around 11:30 and didn't leave until after 7:00. The two highlights for Brooke were the swings and the log ride. She rode the swings seven times and the log ride six times! As she got off of the log ride the last time, she ran up the incline toward me and screamed, "That was awesome!" A special thank you to Paul and Cathy Nagy who were able to get complimentary tickets for us from their friends, Maury and Amy Hill. We all had a fantastic day and enjoyed every single minute...THANK YOU!

Today, Brooke began her day bright and early with Ms. Leslie, her teacher, at 8:00 AM. After school, she had a regularly scheduled visit from the visiting nurse and then she enjoyed a pretty solid nap. When Morgan and Austin got home from school it was decided that we were all going out to see a movie tonight. Brooke decided on the movie, Benji, and everyone else tried to get their homework done quickly. It is was so nice to take the whole family out together.

Tomorrow, she will have her physical and we expect she will be admitted Thursday morning to begin the transplant. We have had soooooo much fun these past few days with Brooke, but the reality is beginning to set in. We could ask of nothing more important than your prayers for Brooke.

Love,
Bryan and Stephanie

Wednesday, August 18, 2004 11:06 PM CDT

The date is set. Brooke will be admitted to Kosair on Thursday, August, 26th for high dose chemotherapy and bone marrow rescue (a.k.a. "transplant"). The treatment plan is intense. She will be given chemotherapy (melphalan, etoposide/VP-16, carboplatin, and cyclophosphamide) for a total of seven hours each day, for four days. That will be followed by two days of rest and then Brooke's bone marrow, that was stored in April, will be thawed and infused to "rescue" her. In total, they have told us to expect Brooke to be at Kosair for four to six weeks.

The doses of chemotherapy that will be used next week will be so high that the effect on any remaining cancer cells will be greater than before...and she has had a great response to those doses! The high dose of chemotherapy that will be used is Brooke's actual treatment, the bone marrow reinfusion is done to rescue her from the side effects of the treatment. If they did not "rescue" Brooke with her stored bone marrow, her normal bone marrow would likely be permanently suppressed and she would not be able to live that way.

Many people have asked, "Why do all of this if she is 'in remission'?" There are many reasons why we believe this is the best option...the survival rates are not good, relapse rates are high, and one doctor told us that it takes one billion cancer cells together to show up on a CT scan. So just because we can't see any cancer now, doesn't mean it is truly all gone. We are really searching for a cure at this point and the peace of mind that comes with knowing we have done all that we can for Brooke.

The past week at home has been nice, but a little busier than we had expected. There have been more clinic appointments and testing than we thought, but Brooke's final test should be an eye exam tomorrow (YEAH!). When not testing, Brooke could be found at an art show at Kosair on Monday, playing with friends, or on Doug and "Loddie's" houseboat today with MomB, Tyler, Kara, and Erika for lunch and fishing! Brooke also started her homebound kindergarten instruction with Bev Leslie from Jefferson County public schools today. We can already tell that she is a phenomenal teacher and Brooke loves her.

Looking forward, we still hope to take Brooke to Holiday World this weekend. Then Tuesday she will meet with Monica (Nurse Practitioner) for a complete physical prior to her Thursday admission. As long as she appears healthy, she will be "ready."

We would ask that you please pray for Brooke during her stay at Kosair and that this treatment will prove to be the answer.

Love,
Bryan and Stephanie

Wednesday, August 11, 2004 11:44 PM CDT

After eighteen days at the Kosair Hotel, the "Fever Admission" is officially over. Brooke's ANC rose to 554 and she celebrated at 6:30 AM with Angie, her nurse. Brooke responded to the good news with a fist pump and "YES!" and then rolled over to catch a few more winks.

It appears that the secret formula to get discharged was Tuesday's decoration on the door to her room. Brooke and Patrick, from Childlife, made a sign that read, "WHITE BLOOD CELLS ENTER HERE!" and placed a target on the door. The staff quickly joined in the fun. Terry, Lynn and Stephanie each placed white sheets over their heads and around their bodies and Bob (Brooke's nurse for the day) brought them into the room as the "white blood cells" he had found. Brooke laughed and laughed! Not only does the staff at Kosair offer outstanding care to all of the children, they genuinely care, and help to make it fun too. We are so very grateful for each of them!

Tonight at home we ate dinner together, hit wiffle balls off the tee, visited with the neighbors and enjoyed ice cream from Starlight Frozen Custard. When we returned home, Brooke's preschool teacher (Mrs. Bobbie) stopped by and we saw the most beautiful full rainbow across the sky. It was unlike anything that any of us had ever seen. The rainbow seemed to last for only a few minutes, but Brooke loved it!!

Then off to bed for the kids. The routine was a little different tonight because Brooke was discharged on TPN and lipids to increase/maintain her nutritional level. It really went better than we thought because there is no IV pole in the house. Instead, there is just a backpack beside her in the bed with the nutrition and a small battery pack inside. We've learned a lot about nursing in the last few months.

The transplant is still planned to begin around the end of the month. We hope to squeeze in a visit to Holiday World or Kings Island between the various tests and the start of school. We think Brooke could use a break and hope that a get-a-way trip might energize her for the road ahead.

Again, a heartfelt "thank you" to each of you. We continue to be energized by your prayers and kindness.

Love,
Bryan and Stephanie

Saturday, August 7, 2004 11:09 PM CDT

It is day fourteen of the "Fever Admission" but strangely enough we are screaming "AMEN" anyway. Brooke completed six more tests (EKG, echo, pulmonary function, MRI, psychology screen, and CT scan of the chest, abdomen, pelvis and sinus) on Friday in preparation for transplant. Dr. Soni called us Friday night to tell us that the results of the CT scan confirmed that Brooke is IN REMISSION!! Specifically, the liver was clean and the previous lesions seen on the lungs are now gone as well. The right kidney was removed during her 6-11 surgery. Dr. Soni said that he was never worried...you just have to love his confidence!

Big sister, Morgan, delivered the good news to Brooke and the conversation went like this:

Morgan: "Brooke! You are free of cancer!"
Brooke: "Free of cancer, what's that?"
Morgan: "The 'tired bugs' are all gone!"
Brooke: "Oh good" and she quickly returned to her game of
Clue with Grandma and said, "Whose turn is it?"

Obviously, the news didn't overwhelm Brooke immediately, but the rest of us were overjoyed. In reality this is what was expected, but we have learned to not get our hopes up too high. After her game of Clue, Brooke did find the time to celebrate just a little. She took a "victory lap" around 7 West with Mom B. It would be tough to say who won the race, but Brooke is sure that she was the winner. We would tend to agree.

For tonight and for the short term, Brooke will remain at Kosair. Her ANC did increase to 46 today, but again the goal is around 500 before discharge. (Once the numbers start to move, they shoot up pretty quickly) We believe that she is on her way up now. Her eating is starting to improve too...she ate most of a hot dog, some corn on the cob, chips and part of an ice cream cone tonight. She even requested that the other kids spend the night with her...Morgan spent the night Friday night and Austin is at Kosair with Brooke tonight. Everyone is doing well.

Words cannot begin to express how happy we are for Brooke. She has worked so hard, complained so little, and maintained her spirit...and ours. We are so thankful for Brooke's health and for the strength that God has given her to be equal to the task. Our deepest gratitude to each of you, as well, for your prayers and generosity.

Love,
Bryan and Stephanie

Tuesday, August 3, 2004 6:29 PM CDT

It is day ten of the "Fever Admission" and Brooke seems to be in a holding pattern. There has been little to no change in either her counts or nutritional status. Today her ANC is nine and she really hasn't eaten much since last Saturday night. Thankfully, they have continued to give her TPN and lipids each evening, but we are anxious for her appetite to return. The blood or platelet transfusions have continued nearly each day as well. It doesn't appear that even the use of the "Super Sad Face" could get her discharged just yet, but Brooke is getting serious now. This afternoon Paige (patient), Elaine (Brooke's nurse), Kathy (nurse practitioner), Patrick and Erika (Childlife), and four other nurses jammed in her room to do the "neutrophil dance!" (Neutrophils are the cells that fight bacterial infections and help to increase the ANC value) Brooke is convinced that this will do the trick!

Brooke has been busy at the "hotel" and her spirit is still strong. Yesterday she had five tests (ultrasound, doppler, chest x-ray, GFR, and hearing) in preparation for the transplant and she took it all in stride. As she returned to the room between testing she "chased" Brian, the chaplin, around the nurse's station and tried to kick him in the shin. We don't know if he realized that was in the job description, but he is terrific and always brightens Brooke's day.

Please pray that Brooke's counts and appetite return quickly. You may hear us scream "AMEN" when she is discharged, but if not, we'll just update the website.

Love,
Bryan and Stephanie

Saturday, July 31, 2004 10:45 PM CDT

It is day seven of the "Fever Admission" and there is more good news and bad news for Brooke. The good news is that all of Brooke's symptoms are resolved...no fever, no diarrhea, no vomiting and most importantly she is feeling much better. The bad news is that her counts still remain very, very low (ANC of 5) and she cannot be discharged until they are 300-400. Dr. Cheerva also commented that her nutrition level is not adequate and she has needed transfusions (blood or platelets) on five of the seven days.

To improve her counts, she continues to get a Neupogen shot each day that speeds the growth of her white blood cells. To improve her nutritional status she has received TPN and lipids for the past four nights. Thankfully, she drank very well on her own all day today and began to eat a little too.

So for now Brooke just has to wait for her counts and nutrition to improve. It would be difficult to estimate just how long that might take, but Brooke is practicing her "Super Sad Face" just in case...picture both hands folded under her chin, head tilted, bottom lip turned down and puppy dog eyes. She thinks that if the numbers aren't just right, she may be able to convince Dr. Raj to discharge her anyway with one "Super Sad Face" look. We'll let you know how it goes...

Seriously, we are hopeful that discharge does come soon because the transplant date has been set for an August 25th start...so any days at home between now and then will be very special to all of us.

Love,
Bryan and Stephanie

Wednesday, July 28, 2004 11:15 PM CDT

Brooke is much improved today, but now we know what Dr. Soni meant when he said that this round would be "harsh". During the first 24 hours, Brooke vomited ten to fifteen times and had continuous diarrhea. Since then, she has shown steady improvement and today she had no vomiting and better success in the bathroom...but she has one sore bottom as you would imagine!! Other good signs are...her temperature had been 103.8 and is now 97, her heart rate had been 178 and is down to 100, and now she is off two of the three antibiotics she was taking at admission.

The results from the original blood cultures came back Monday and the culprit was e. coli. Thankfully, the subsequent culture from Tuesday proved negative already for e. coli and it is obvious that she is feeling much better. Dr. Raj explained that we all have e. coli in our body that never reaches the bloodstream, but because Brooke has essentially no white blood cells to keep them out...they entered the bloodstream and she spiked a fever. He also told us today that Brooke will need to be on her antibiotic until August 9th (total of 14 days), but she can take it at home once her counts recover. Today her ANC was very low still at "6", and it needs to be at around 300-400 before she can go home.

Yesterday we met with Dr. Cheerva, one of the oncologists in Brooke's office, who is the head of the transplant team. She gave us an overview of what to expect during transplant. Currently, there is no firm start date, but we expect to begin around August 23rd and the conservative guess on her length of stay is four to six weeks. We are pleased with the timing because Morgan and Austin will be returning to school at Holy Trinity on the 18th and we are optimistic that they will be distracted from some of what is going on. In general, they have both done very well with everything, but transplant will take things to a new level.

Undoubtedly, there are risks and long-term concerns to consider with transplant, but we are convinced that this is Brooke's best option. The reality of those risks are certainly difficult to accept at times, but the reality of Brooke's prognosis without the transplant is even more difficult for us to think about. During the transplant, more than ever, we would ask for your daily prayers for Brooke, the doctors, nurses and staff. Thank you in advance!

Love,
Bryan and Stephanie

Sunday, July 25, 2004 8:52 PM CDT

Brooke had a tough finish to what had been a very good week...but Dr. Soni had warned us that this round would be "harsh". This morning she awoke feeling just a little warm to the touch. The thermometer read 99.3, but her eyes told the story. We knew. After church her temperature was 102. A quick call to Kosair and they prepared her room. We arrived about 1:30.

They gave her Tylenol, started IV fluids and drew blood cultures right away to test for any infection. They drew the first blood from her central line...no problem, but then the peripheral blood draw came from her arm (YUCK). The attempt in her arm did not work (DOUBLE YUCK) so the nurse tried to take the blood from her hand, and thankfully that worked fine. After the blood was drawn they gave her an antibiotic (Cephapime) and she enjoyed watching a movie with our dear friend, "Loddie". During the movie, she began to get chills, her heart rate increased to 178, and she vomited. Slowly, the chills subsided and her belly settled, but her heart rate has remained high. Since then they have given her a blood transfusion (her hemoglobin had dropped to 5.7) and two additional antibiotics (Vancomycin and Gentamicin). Tonight she is resting well, looks better and the Tylenol seems to have her temperature under control.

Now the waiting game begins. The initial results of the blood cultures will be back tomorrow afternoon (24 hrs.) and then again at 48 hrs. The doctors will choose what antibiotic to use moving forward based on those results. Even if the results are negative, they will still keep her on an antibiotic until her counts recover to an ANC of 500. Today her ANC was 4. Last time she had a fever, she was in Kosair for six days, so we may be here awhile.

The rest of the week really was great. Monday the tooth fairy came to see Brooke for the very first time! Tuesday we all stayed up until after midnight as a family and watched the movie MIRACLE (we love the title!) together. Wednesday, Brooke went to the pool and played cards with her friend, Erika. Thursday, she played with Kara most of the day and Friday night she joined Morgan, Austin, Kristen, Linda and John-John in the basement for a "Dance Party". I'm told Brooke does a nice "air guitar" but she wouldn't show us! Saturday, her favorite babysitter, Carmen, came over to stay with the kids and there was a big popcorn party and ice cream cones too!

All in all we have been very fortunate during Brooke's treatment. Even though we have run into a bump in the road with this admission we have our eyes focused on the finish line and ensuring that we do everything possible to return her to perfect health. We continue to BELIEVE, HOPE AND PRAY that in the end it will be enough.

We would again ask for your continued prayers for Brooke.

Love,
Bryan and Stephanie

Sunday, July 18, 2004 9:47 PM CDT

Brooke's platelets increased as Dr. Soni "predicted" and she was admitted Friday morning for her "special medicine". As soon as we arrived, the game playing began - UNO, Crazy Eight, Clue Jr., Bratz:Passion for Fashion, Blue's Clues, Nickelodeon...you get the idea. Thankfully, Brooke had plenty of players through the weekend including Morgan, Austin, Kara, Carmen, Grandma, Papa, Grandad, Mom "B", Patrick from Childlife, and Brian the Chaplin. Thanks for all the visits!

Saturday morning as Brooke awoke, a young lady came into the room to ask if she would like to celebrate Christmas in July. She told Brooke that she had gifts from Santa Claus and wanted to know if Brooke was interested. Brooke agreed and much to her surprise, the present was delivered by Santa himself and Mrs. Claus! He even told Brooke that he traveled in on his sleigh...of course!! It was a special way to start the day.

Sunday was a very short stay at "Hotel Kosair". Brooke only had one hour of chemo and it arrived promptly from pharmacy at 9:00 AM. After some discharge paperwork and fluids, she was out the door by 11:15. Thank you to Lucy in pharmacy and Nikki, her RN, for helping Brooke get home so quickly. Tonight, Bryan suggested that we enjoy the beautiful weather and go to watch the Bats game. The highlight of the game for Brooke was seeing one of her favorite nurses, Autumn, at the game. Her son, Parker, was with her too which was especially nice because we have heard so much about him...what a cutie! The temperature was delightful, the kids had a blast, and you guessed it...the Bats won!

The last couple of weeks have been so nice. Brooke has really began to show glimpses of her old self. She set the table for dinner, ran through the house, fought with her brother/sisiters, and even rode her bike a few times. It may not sound like a lot, but it is as close to "normal" as we have seen in eight or nine months. AMEN.

But now the work begins...transfusions are almost a certainty this round. Her ANC today was already down to 875 (by comparison we left Kosair with an ANC of over 5,000 last round). The likelihood of a fever is also very high, but Brooke has fooled us before. We really are trying to take things ONE DAY AT A TIME, and TODAY WAS GREAT!

Love,
Bryan and Stephanie

Wednesday, July 14, 2004 9:29 PM CDT

Well, it is July 14th and Brooke is still at home. She was not able to be admitted for her "special medicine" because her platelets were still too low on Tuesday. Dr. Soni believes that they will rebound quickly now. We will find out tomorrow when we return for counts. If they are over 100,000 tomorrow, then she will go to Kosair on Friday and stay through Sunday.

Brooke's appointment with Dr. Nagaraj, the surgeon, was encouraging. He is pleased with the healing of her scars and he said that "she has done very, very well at recovering from a surgery like this." He told us that his part in Brooke's treatment is now complete unless they see any remaining lesions on the CT scan before the high dose chemotherapy and stem cell transplant. If there are any lesions that can be seen, then Brooke would have to return to surgery to have them removed before the transplant. The outcomes are MUCH BETTER for children that go to transplant listed as in "complete remission" vs. "partial remission" We must find a way to get Brooke in the "complete remission" category. The CT scan that will answer that question, will be done following this round of chemo.

So for now we are focused on helping Brooke through this round of chemo. Dr. Soni again reminded us that this round of chemo will be "harsh". Now she will have the cumulative effect of all of her chemo, plus the full effect of the radiation. What that means for Brooke is to watch out for fevers and expect more transfusions.

It is hard to believe that we started this journey with Brooke six months ago. In many ways it has gone by very quickly, and we still find it difficult to believe that this is Brooke's last "regular chemotherapy" before the transplant! She has made remarkable improvement and we know that she did not do it alone...we would like to again thank each of you for your continued prayers.

Love,
Bryan and Stephanie

Thursday, July 8, 2004 9:30 PM CDT

Brooke went to the office today for "counts" and her ANC was 9400...so her numbers are definitely on the rise! She may even stay on schedule for her next round of chemotherapy if her platelets increase too. Today her platelets were at 34,000 but they need to be at 100,000 before they will admit her for chemo. Her target date for chemo is Wednesday, July 14th. This cycle is only three days/two nights!

Next week Brooke will have several appointments. On Monday afternoon, she has a follow up with Dr. Nagaraj...the WONDERFUL SURGEON who was able to remove so much of the cancer from her body. On Tuesday, she will go back to the clinic for "counts" and a pre-admission physical with Dr. Soni to make sure that she is ready for her next round of "special medicine". We are also waiting to hear from the office because she will need another kidney function test and hearing test before she takes one of the upcoming medicines (carboplatin). These two tests will also have to be completed before she is admitted. So next week will be very busy, but Brooke is ready.

Please continue to pray for Brooke's strength and healing.

Love,
Bryan and Stephanie

Tuesday, July 6, 2004 11:18 PM CDT

Friday, Brooke went to the office and we were delighted that her counts were still strong (ANC at 2600). This was especially good news because we had tentatively planned a get-a-way weekend to Nashville TN and the doctors gave us clearance to travel. We have a friend who plays AAA baseball for the Houston Astros farm team and this was his closest game to Louisville for the entire season.

Brooke attended his game on Friday night, visited and put her feet in the pool on Saturday, had a private lunch for two with Daddy that afternoon, and went to the baseball game Saturday night....complete with fireworks!Chris' team did not win either game, but Brooke still proclaimed that she was a good luck charm. Saturday night after the game, when Chris came up to visit with Brooke at the hotel, his cell phone rang and it was the manager of his team informing him that he had been "called up" to play for the Houston Astros... the next day, Sunday afternoon! It was so much fun to share in his excitement and we wish Chris Burke (2B) all the best with the Astros.

Sunday, the 4th of July, we returned home late from Nashville and made a quick dash downtown to watch the fireworks over the Ohio River. The weather was nice, the view was great and the crowd was not too bad. Everyone had a nice time.

Today, Brooke returned for counts at the office and her ANC was at 1500. We can't be sure at this point if her counts are on the way up or the way down, but we return to clinic again on Thursday. Brooke has done very well and has enjoyed her time at home. In fact, she has played with her friend, Kara, for most of the day today. She also had a visit from our friend, Kelly, and her daughter, Skylar, tonight.

The plan ahead calls for Brooke to return again to the clinic Thursday for "counts" and her next chemo could be as early as late next week or the week of the 19th.

Once again, we would like to thank everyone for their support and prayers. We truly feel that they are making a difference in Brooke's life.

Love,
Bryan and Stephanie

Wednesday, June 30, 2004 10:46 PM CDT

The past few days have gone as planned. Late Sunday afternoon, Brooke was discharged following her chemotherapy. That evening we had dinner and a birthday party for Austin with both sets of grandparents and plenty of chocolate cake!! It was just so nice to have everyone together at home. We did a quick check of the calendar and Brooke has been at "Kosair Hotel" for twenty of the past twenty-nine days (fever, surgery, chemo). We are hopeful that now she can enjoy a nice stretch of time at home before returning for her next round of chemotherapy. Please pray for NO MORE FEVERS!

On Monday and Tuesday morning, Brooke returned to the James Graham Brown Cancer Center for her final two radiation treatments to her abdomen. They went very smoothly and the staff was terrific. They even surprised Brooke with a special Lion King board game that she loves. Brooke, however, had her own surprise for Dr. Silverman...after her last treatment she pulled out two cans of silly string and sprayed him all over. When we left, he still had some pink string on the front of his white coat and blue on the sleeve. You would have to meet Dr. Silverman...you couldn't just "Silly String" any of your doctors, but he has a great sense of humor and played right along. Brooke hasn't laughed that hard in a very long time. If any of the pictures turn out, we will update the website.

Brooke has spent the last two nights at the ballpark. The St. Matthews All-Stars (Austin's team) were playing in the District Tournament. Tuesday night when Brooke arrived, St. Matthews was down 3-0 and came back to win 9-6. Tonight in the final game, when she got to the ballpark we were down 2-0 and we rallied to win 10-4. Once again, Brooke is convinced that she is the good luck charm and we have learned that we need to make sure she gets to the park for the START of the game.

Brooke will return for "counts only" on Friday and we expect that they will be dropping or at zero by then. By next week, she will probably need some blood or platelets. For now, being home together, free of doctor's appointments and stays at Kosair, is just fine with us!

Again, a special thank you to each of you for all that you have done. We are reminded each day of how blessed we are to have you in our life.

Love,
Bryan and Stephanie

Thursday, June 24, 2004 9:29 AM CDT

Brooke began her radiation and fifth round of chemotherapy this week, but not without delay. On Sunday morning she began to feel bad and battled with some pretty frequent diarrhea and vomiting. The vomiting subsided rather quickly, but the diarrhea lingered. Because of the risk of dehydration and because she was still symptomatic, the doctors chose not to admit her Monday as planned. (Brooke was thrilled!) On Tuesday, she was admitted and they ran fluids to hydrate her. They decided to hold the chemo until Wednesday and began only with the radiation on Tuesday.

On Tuesday afternoon Brooke went to the James Graham Brown Cancer Center at the University of Louisville and had her first of six radiation treatments to her abdomen. The preparation time in the office took 40 minutes, but the actual treatment time was only ONE MINUTE...30 seconds from one angle and 30 more from another. We were relieved that the treatment was this brief because no one is allowed to be in the room with her. The nice part is that they do have cameras in the room and an intercom so that you can see her and talk to her during the time apart.

The plan for the radiation is to continue through Friday this week and then finish with Monday and Tuesday appointments next week. The chemotherapy will continue through Sunday and she will be discharged. Brooke is looking forward to getting home on Sunday so we can celebrate Austin's ninth birthday complete with her favorite...chocolate cake with chocolate icing!

Thanks for checking on Brooke!

Love,
Bryan and Stephanie

Friday, June 18, 2004 10:34 PM CDT

Saturday Brooke remained in ICU attached to all of her tubes and wires. Sunday, they removed the ATV line, NG tube, catheter, and oxygen monitor. Monday, they removed the chest tube and transferred Brooke back to 7 West (Oncology). She recuperated Tuesday and Wednesday, began to drink and eat a little, and had a successful BM...a key exit criteria. Thursday afternoon, Brooke returned home and she went to St. Matthews for Austin's ballgame that evening. What a trooper!!

Today, Brooke's treatment plan was finalized and Dr. Soni emailed it to us this afternoon. The next steps are as follows:

1. Chemotherapy: Round Five will begin this Monday, June
21. She will receive Cytoxan and VP-16 for five days.

2. Radiation: to her abdomen will begin this Tuesday, June
22. Radiation will last for six days. Tuesday thru
Friday this week and then Monday and Tuesday next week.

3. Chemotherapy: Round Six will begin after her counts
recover from Round Five.

4. High Dose Chemotherapy and Stem Cell Rescue: We
anticipate that this will begin around late August/early
September. We are told that Brooke will be at Kosair
for four to six weeks.

5. Radiation: to her lungs at reduced doses to limit toxic
effects.

Dr. Soni has been vigilent in obtaining opinions and input on Brooke. He has spoken with specialists throughout the United States and in Germany. Additionally, her case was the subject today at "Tumor Board" at Kosair, where all of the specialists give their opinion on high risk patients. Dr. Soni presented his plan for her and it was approved.

The difficulty is that there is not much data on patients like Brooke. There were only 20 patients in the National Wilms Tumor Study (1996) that were Stage IV with anaplasia cells. The survival rate for these patients was only 32.4%...we are looking for something more effective. Dr. Soni also referenced a study done in Germany (2002) in high risk Wilms patients who have relapsed - presumably at higher risk than even Brooke. The major difference in the two studies was that the patients in the German study received High Dose Chemotherapy and Stem Cell Rescue and they had a survival rate of 60.9%. Dr. Soni also highlighted that in the German study, all of the patients who were listed as in "complete remission" before going to transplant, lived long-term following the transplant.

Dr. Soni warned that the chemotherapy ahead will be "harsh" because of the cumulative effects over time and now the addition of radiation. However, we are steadfastly committed to his plan for Brooke. We would ask that you would join us in praying that this will prove to be the cure.

Friday, June 11, 2004 11:36 PM CDT

Dr. Nagaraj said that Brooke's surgery actually went better than he had expected. During the surgery he was able to completely remove the right kidney and renal vein, biopsy the liver, and clarify the blockage in the inferior vena cava (IVC) that supplies the heart.

From the beginning, the IVC has been a mystery...some doctors thought that the blockage was only a blood clot, others said it was tumor, and still others said it was a combination of both. After seeing the area firsthand, Dr. Nagaraj explained to us that the blockage had previously been a tumor. However, because the chemotherapy had been so effective, the tumor had been completely reduced to scar tissue. Interestingly, the blockage was not removed from the IVC for two reasons: 1) Brooke's body had already developed collateral circulation that made it not necessary for her circulatory system and 2) The effect of the chemotherapy was such that not only did the tumor inside the IVC shrink, the IVC effectively collapsed around the scar tissue. Dr. Nagaraj explained to us that this came as a surprise to him, but that it was "good news" because there was NO CANCER left in this area.

While Dr. Nagaraj was in the chest cavity to examine the IVC, he provided us with one additional surprise...He also removed three lung lesions/spots from her right lung. He commented that one lesion appeared to be scar tissue only, but he could not be sure of the other two. All of the tumor samples that were collected have been sent to pathology for review. He believes the results will be available within 4-5 days. The pathology information will help to develop the next steps in Brooke's treatment plan.

As Brooke recovers in the ICU tonight, she is covered with tubes and monitors...a NG tube, a catheter, a chest tube, an ATV line to monitor her blood pressure interarterially, an additonal IV in her hand, a oxygen saturation monitor, a morphine pump and a bag of fluids for good measure. Her belly is thoroughly bandaged. The surgery lasted five hours. She needed two units of blood and one bag of platelets. The surgery resident reminded us tonight that this was a BIG surgery and he said that he was surprised that she was not on a ventilator too! He expects that she will be in the ICU for two to three days and then move back to 7 West. Despite it all, Brooke continues to display such great strength and courage. We often wonder, as adults, if we could be so strong.

On balance, the challenges of today are a small price to pay for Brooke's long-term health. We continue to pray that the results from pathology will be negative for cancerous cells and that Brooke's doctors will have clarity about her treatment options.

We believe that your prayers have made a difference for Brooke and we are eternally grateful for all the "extra" prayers that were said for her today.

Love,
Bryan and Stephanie

Saturday, June 5, 2004 10:40 PM CDT

Good news! Brooke's ANC rose to 417 on Friday and Dr. Raj graciously approved her discharge. We were all delighted to get her home. That night she went to watch Austin's baseball team play and they won the league championship. Brooke is convinced that she is the team's good luck charm!

We also learned on Friday morning that Brooke WILL have her surgery on June 11th. After we received Tuesday's CT scan results, we emailed Dr. Soni on vacation (at his request). What we didn't know is that Dr. Soni then called Dr. Nagaraj, the surgeon, and they made the decision to continue as planned. We were shocked that Dr. Soni would act on the results from vacation, but it is just another reminder of what a special physician he is. We consider ourselves very fortunate to have Dr. Soni as Brooke's oncologist.

The next step for Brooke is an office visit on Tuesday. As it stands now, Brooke will admit to Kosair on Thursday the 10th and have her surgery beginning at 7:30 AM on the 11th. So for now, Brooke will be very busy enjoying the next five days doing everything she can get to on her "List of Fun." If there are not any further changes, we will next update the website following surgery.

It feels like we have waited so long to get Brooke to this point. We are thrilled to be so close, but we realize that it will be a long and difficult surgery. Please pray for Brooke, Dr. Nagaraj, and all of the staff at Kosair. We know that your prayers will inspire and guide them on Friday.

Love,
Bryan and Stephanie

Thursday, June 3, 2004 12:17 AM CDT

Brooke remains at Kosair today and she will probably go home tomorrow or the next day. Her ANC is 138 today, but has to get to around 500 to get a "ticket" home. She actually is feeling very well and is busily painting, baking, playing games and watching videos each day. Brooke continues to enjoy the company of family, friends, the wonderful nurses of 7 West, and the Childlife Team (Regina and Erika) at Kosair.

The results of Brooke's CT scan are in and final. The bottom line is that Brooke is remarkably improved from her initial diagnosis. However, the CT scan which is much more accurate and specific that her previous ultrasounds and chest x-rays, did highlight some new information. The liver which had been reported as clear by ultrasound, actually still has one 6 to 7 mm lesion. The lungs which had appeared clear by chest x-ray, actually still have a few very small lesions remaining too.

Now the question is if Brooke will actually have her surgery on June 11th or not. One line of thought would support additional chemotherapy now because it is working so well, and then surgery to clear all visible signs of cancer. The other would say, remove the primary tumor now so that the chemotherapy can work specifically on the lungs and liver lesions and any other microscopic cells that may remain. The problem with this is that if the lungs did not clear for some reason with the additional chemotherapy, Brooke would then have to undergo another surgery later on her lungs. The decision will be made early next week when Brooke's primary oncologist, Dr. Soni, returns from vacation. We truly do not care which way we proceed, we ONLY want what is best for Brooke.

So for now, we just have to wait for her counts to go up and for the decision on her surgery. Brooke is anxious to go home because she has very big plans for the days ahead...see Shrek 2, fly her Barbie kite at the river, go to the zoo and the pool, and to go to her special friends' ("Loddie" and Doug) house to make pizzas.

Again, we cannot say thank you enough for your continued support. When we have stuggled with the enormous amount that Brooke has had to and will have to face, you have lifted us up with you comments, notes and prayers.

Love,
Bryan and Stephanie

Sunday, May 30, 2004 9:45 PM CDT

On Friday, Brooke returned to the clinic for a check of her bloodwork. As expected, her hemoglobin was low (7.4) and she needed to go to Kosair's for a blood transfusion. Her platelets were also low Friday...but not low enough to transfuse the platelets then. Instead they made an appointment for Brooke to return to Kosair on Sunday "just to check her platelets."

So today started just as planned and Brooke arrived promptly at 9:00 AM. By 9:40, the results of her CBC showed that her platelets were at 11,000 (low is under 20,000) and they began her platelet transfusion by 10:30. Everything seemed to be going just fine, except that her temperature began to creep upward. It started at 99.1 and rose to 101.5, before they decided officially to admit her. The doctors treat this situation very seriously because she has essentially no immunity at this point. The term the doctors use is neutropenic (ANC is zero).

They drew blood cultures from her central lines and from her ARM (YUCK!) to find out what type of infection might be causing her fever. They will get results back at 24, 48 and 72 hours. Based on the results they receive, the doctors will know which antibiotic will be most effective. Dr. Bertolone said that the best case senario would be that she stays "three to four days" but it could be "up to seven."

Brooke was obviously disappointed to have to stay, but she has again chosen to be so very tough...Please continue to keep Brooke in your prayers!

Monday, May 24, 2004 10:48 PM CDT

Today went very well. Brooke began her morning at the oncology office and had her bloodwork checked. Her ANC was 3,800, hemoglobin was 8.9, and platelets were 174,000. All of those numbers were good enough that she did not require a blood or platelet transfusion today.

This afternoon we met with Dr. Nagaraj, the pediatric surgeon. In general, he is pleased with the shrinkage of the tumor, but is still interested in the results from Brooke's upcoming CT scan on June 1st. He is especially looking for more information as it relates to the blockage in the Inferior Vena Cava (IVC), which leads to the heart. He explained that a tumor in this area will often remove rather simply and pull out like a "tail". However, if the tumor has not decreased far enough away from the heart, he may be forced to perform a bypass to clear the area. This would not be the ideal situation, but we are determined to get the "CLEAR" result, one way or another.

Surgery details:

*June 10 - admit to Kosair in the morning
*June 11 - surgery to begin around 7:30 AM
*Surgery expected to last four to six hours
*Brooke expected to be in the hospital for one week

Dr. Nagaraj said that his goal is to remove all visible signs of cancer. He is planning to remove Brooke's right kidney and renal vein, all surrounding lymph nodes, clear the IVC, and biopsy the liver. He has cleared his schedule for the entire day and told us three times today that this is a "big surgery". Somehow because we have been so focused on getting the cancer out, we had overlooked the reality that this is "BIG". We are confident that Brooke is in great hands with Dr. Nagaraj (we have heard some wonderful stories), but we also know that he will do even better if we all put our hands together and pray for him and Brooke on June 11.

Love,
Bryan and Stephanie

Thursday, May 20, 2004 10:42 PM CDT

Brooke's visit to the Kosair "hotel" went great. She checked in around 8:30 on Tuesday and was discharged at 1:30 this afternoon. The whole experience was her best yet...she spent most of her time visiting with friends, playing in the playroom, playing Chutes and Ladders, and generally spending time outside of her room.

She especially enjoyed making "cupcones" with Erika, the Child Life intern. A cupcone was new to us...we learned you can make a cupcone by mixing cupcake batter, spooning some directly into an ice cream cone, and then baking it in the oven. Brooke thought it was expecially fun to put the icing on the top and she was anxious to deliver the results around the unit. Her first recipient was Dr. Cheerva - what a brown-noser!!

We were also pleased that she was able to decrease two of her home medicines, and they expect to wean Brooke from her appetite stimulant completely this week. Let's just say the stimulant has been working VERY WELL.

Monday, Brooke will return to the office for "counts only" which means they will simply draw her blook and check it. Later Monday afternoon she has an appointment with Dr. Nagaraj, her surgeon, to discuss the general nature of her upcoming surgery.

Wednesday, Brooke is scheduled to see Dr. Soni for her regular weekly appointment. However, the most important date will be June 1st when she has her complete CT scan and chest x-ray. After these test results are complete, we expect that Dr. Nagaraj will be in a position to schedule her surgery.

Brooke does have a lot of appointments this next week, but we are so very thankful for the results she has received. Strangely enough, Brooke really is looking forward to surgery...she told grandad that the day she has surgery will be the best day of her life, when she gets all of those "tired bugs" out. Amen

Love,
Bryan and Stephanie

Monday, May 17, 2004 10:31 PM CDT

The weekend was great for Brooke! She went to the zoo, to her preschool graduation, to the Holy Trinity festival and rode every ride, to one baseball game, and to the end of her friend's birthday party. Sunday, she decided at the last minute not go to the Riverbats' game with us, but two of her neighborhood friends came over to play instead and she was thrilled. Brooke is obviously not letting anything interfere with her social life!

Today, Brooke returned to the office and her platelets increased to 245,000 which is high enough to be admitted for chemotherapy. She will check in the Kosair "hotel" around 8:30 tomorrow morning and should return home late Thursday afternoon.

Please continue to pray that the chemotherapy will reduce the size of the tumor on her kidney and kill any other cancer cells. We are so thankful for her response so far and we are convinced that she could not have done it without everyone's suppport.

Love,
Bryan and Stephanie

Wednesday, May 12, 2004 9:32 PM CDT

Brooke returned to the office today for labwork and her platelets appear to be stuck at 45,000. The plan is to return on Monday for labwork again and if she has increased to 100,000 by then, she will be admitted Tuesday for chemotherapy. Otherwise, we will repeat the labwork later in the week.

The results of both her kidney function test and ultrasound came back favorably. The kidney function test showed that her kidneys are working well enough for the next cycle of chemotherapy. The ultrasound results were GREAT:

1. The tumor on her kidney now measures 7.1 x 5.9 x 6.7 cm. for a 75 percent reduction from baseline.

2. The one remaining lesion on her liver cannot be seen now.

3. There is also a decrease in the amount of tumor or blood clot (it is controversial which one it might be) that is seen in Brooke's inferior vena cava. This is the first documented decrease in this area.

We also had a conversation with Dr. Soni about next steps. It appears Brooke will receive her chemotherapy during the week of May 17th, then have a CT scan the following week, and then meet with the surgeon. Dr. Soni believes that the surgery will take place somewhere around June 14th.

Overall, Brooke is doing so much better. She has regained all of her weight and then some, she is eager to get out of the house and do things again, and she has been working on her batting on the tee in the backyard. Also, she was not disappointed at all that her platelets were too low for her "special medicine." Rather she has chosen to fill her upcoming days with plans to go to the zoo, to Morgan and Austin's ballgames, to the Holy Trinity festival, and to the Riverbats baseball game Sunday. She is certainly planning for a terrific weekend and we hope that you do the same!

Monday, May 10, 2004 10:09 PM CDT

On Thursday of last week, Brooke was two for three at the doctor's office. Her ANC was up from zero to 1,100 and her hemoglobin was up to 10.4 from 7.4!! Unfortunately, her platelets were very low at 6,000 and she had to go to the Kosair "hotel" for a platelet transfusion. This was a new experience for Brooke and caught us all a little off guard, but really wasn't too bad. Brooke was assigned to her favorite nurse, TRACY, and was done in about three hours!

Today, Brooke returned to the office for labs again and her platelets are improved, but still low at 45,000. This is important because she cannot begin her next round of chemotherapy until her platelets are over 100,000. She is scheduled to go back to the office on Wednesday to check her levels again and it is pretty simple...if her platelets are over 100,000 she will be admitted on Thursday as planned for chemo, and if not she will wait until one day next week after her platelets get there. The nurse explained that getting her platelets up to the right level is now up to her body. They will not continue to "give"/transfuse platelets to get her to the right number, her body must rebound on its own.

Today we also learned that Brooke will have two important tests tomorrow. The first will be a follow up on a kidney function test (GFR) because of the potential effects of the chemo. The second will be an ultrasound to see the size of the tumor on the kidney. We hope to get some results on the ultrasound by tomorrow afternoon and will update the website as soon as possible.

Please pray that the tests go well for Brooke!

Tuesday, May 4, 2004 9:32 PM CDT

Last Saturday Brooke returned home just in time for Austin's First Communion party. It was fun for her to visit with everyone and so very important for her to be a part of the celebration!

Thursday, Austin stayed home from school with a stomach virus and he took it easy most of the weekend. Thankfully, Brooke has not shown any signs of a problem yet.

This Saturday, Brooke enjoyed our Derby party at home with her cousins. It total she won nine dollars and she was especially pleased that Lion Heart came in second for the BIG six dollar payoff!

Today, she had her weekly checkup with the doctor. Her ANC was again at zero, so we will need to be very careful with her until her counts recover to prevent her from getting sick. Also her hemoglobin was low at 7.4, so she went to the Kosair "hotel" for a blood transfusion. She said on the way home this afternoon that she already felt better. None of this is a surprise...we prefer to think that if the chemotherapy is wiping out her counts, it must also be wiping out some tumor/"tired bugs"!

Brooke returns to the doctor's office on Thursday to recheck her counts, and hopefully they will be increasing by then. We also should find out when the next ultrasound will be...we expect/hope that it will be one day next week. And finally, if her ANC and platelet counts are high enough, she will go back to the Kosair "hotel" on or around Thursday of next week for three more days of chemotherapy.

This may sound repetitive, but Bryan and I want to tell you again and again how much your support has meant to us and to Brooke. When we talk to her about how important it is for her to continue to be strong...we remind her that she is not alone. She has a strong God, her family, and more friends than we could ever imagine at her side. Thank you from the bottom of our hearts and please continue to pray for Brooke.

Friday, April 23, 2004 10:15 PM CDT

The bone marrow aspiration on Tuesday went as planned. The procedure began shortly after 9:00 and the nurse came out just before 10:00 to say that they were finished. Dr. Soni told us that they were able to get "all of the cells that they need." Brooke recovered in the short stay area with intravenous fluids and went home around 4:30. On Wednesday at the clinic, the nurse practitioner completely removed the dressing. Brooke left the office with only two small bandaids on her lower back and complained very little about the pain.

Thursday began Brooke's third cycle of inpatient chemotherapy. She is taking a new drug, carboplantinum, with etoposide. The side effects can include damage to kidney tissue and hearing problems. Brooke has had baseline tests for both, and she was thrilled to learn that she can "hear like a bat." She thought that was so funny!

Now for the best news...Brooke had her ultrasound today. The large tumor on her right kidney is now almost 40% smaller than when she began!! Dr. Soni says that Brooke is on schedule for surgery after cycle four of chemotherapy. Cycle four should begin around mid-May. After her counts recover from chemo, we expect that she will be ready to go to surgery to remove most, if not all, of the remaining tumor.

We would like to again express our gratitude for your prayers and concern. Each day we hear unbelievable stories of love for Brooke from those we hold very dear, and from people that we have never had the opportunity to meet. Thank you to each of you for what you have done...we are convinced that it has and will continue to make a difference for Brooke.

Saturday, April 17, 2004 7:52 PM CDT

The week did not go as planned. Unfortunately, we did not collect any cells this week that could be of use for Brooke. On Monday shortly after the temporary central line was placed, Dr. Soni came to Brooke's room to explain...because there is tumor involvement in Brooke's inferior vena cava (near the heart) and the central line goes into the heart...it is theoretically possible that any collection of stem cells done this way could have cancer cells in it. That was good enough for us and we have decided to collect or harvest the cells in a different manner. It would have been much, much better if they would have realized this before Brooke went through so much, but we are eternally grateful that they thought it through before we transplanted those cells back.

Plan B for the cell collection is for Brooke to have a "bone marrow aspiration" on Tuesday of this week. She will undergo anesthesia, and Dr. Soni will use a needle to remove the stem cells from the bone marrow in her lower back. The procedure is scheduled for 8:15 and should last less than two hours. Then she will recover for several hours with IV fluids, and go home the same afternoon or evening. This collection will be better for two reasons - Wilms tumor is not typically found in the bone marrow and she has never had any tumor in her lower back/hip area.

On Thursday, Brooke will return to the Kosair "hotel" for her regularly scheduled inpatient chemotherapy. Thankfully, this cycle is only for three days, rather than five days as before. We also expect that while we are there she will have another ultrasound to evaluate her progress. If we stay on schedule, Brooke should return home on Saturday evening to celebrate Austin's First Communion.

Finally, we have added a few pictures to the website under "photo album":

1) Brooke is anxious to show you the effect of the chemotherapy (we call it "special medicine") on her hair!

2) Brooke had a great Easter celebration!

3) By the end of the week, we hope to also update the website with a picture from the St. Matthews Little League Parade. Brooke rode in a SAAB convertible with Buddy Bat (team mascot for the Louisville Riverbats) and smiled and waved the whole way. It was certainly a memorable day!

Again, "thank you" to each one of you. We are truly blessed and comforted by yours thoughts, actions and prayers. Please continue to pray that Brooke's bone marrow aspiration will go well on Tuesday and that the tumors will continue to shrink.

Sunday, April 11, 2004 4:07 PM CDT

Brooke's last treatment at the Kosair "hotel" went very well. She enjoyed her many visitors and each "movie night." Brooke ventured to the Family Room twice while we were there to participate in making cookies and slushies one day and crafts the next. She also met a six year old boy named Sean that became a good buddy to her. Sean claims that Brooke is his girlfriend, but Daddy doesn't think so!

We do not have any objective results from the second treatment (CT scan probably around the week of April 19th), but she does continue to gain strength. In the last couple of weeks she has been to the movies, to the bowling alley, to a friend's house to play for two hours, and in two Easter egg hunts this weekend. We would like to especially thank our friends at Holy Trinity for planning and hosting a special Easter party at our home yesterday, complete with the Easter Bunny himself.

The treatment plan for Brooke continues to look complicated:

1) Step One (Shrink the tumors) - Scheduled for four cycles of chemotherapy and she has completed two cycles at this point.

2) Step Two (Remove the tumors) - Surgery to remove the remaining tumor.

3) Step Three (Prevent the recurrence of the tumors) - This step is not as certain, but could be continued inpatient chemotherapy or the more likely option...a stem cell transplant. I couldn't begin to explain the process entirely, but essentially they collect stem cells from Brooke (which make white blood cells, red blood cells and platelets), freeze them and reinfuse later after high doses of chemotherapy. The entire process takes 4-6 weeks in the hospital with extensive follow up for an average of six months following.

In preparation for the possibility of a stem cell transplant, Brooke's cells will be collected or "harvested" this week. Unfortunately, the central line that Brooke has now will not handle the pressure of the process, and she will have a temporary second line implanted tomorrow at 9:00 AM.

Then each day following, beginning this Tuesday morning, Brooke will report to Kosair at 7:30 AM for a blood test that will indicate if her body is producing enough stem cells for a good collection. The expectation is that Wednesday would be the first "collection day". On average, it takes two to five days to collect the necessary number of cells. The daily process of collection takes an average of six to eight hours. We are assured that the process does not hurt, but can be "boring". On a brighter note, if Brooke is finished with her collection before Saturday (April 17th), she is scheduled to be the Grand Marshall of the St. Matthews Little League Parade...what a great ending to the week that would be.

It is clearly going to be a long and important week for Brooke, and we would like to thank you in advance for your prayers.

Saturday, March 27, 2004 2:34 PM CST

The results of the abdominal ultrasound are in and there has been some improvement:

1) The large tumor on her right kidney is "slightly
smaller" - AMEN

2) The two lesions originally seen on the liver are not
seen now - AMEN

These results, coupled with the chest x-ray from Wednesday showing that the lungs are now clear of tumors, give us much to be thankful for.

Of concern, however, is the fact that the extension of the large tumor into the renal vein and inferior vena cava remain unchanged. We are hopeful that Brooke's next treatment (scheduled for Tuesday through Saturday at Kosair's) and some serious prayers will begin to impact this area as well.

For now, Brooke is enjoying her weekend at home. We are all trying to focus on her improvement and today without too much emphasis on what hasn't changed and the future. We are all under strict orders from Brooke not to mention the "H" word - hospital.

Again, we would like to thank each of you from the bottom of our hearts for the many tremendous ways you have reached out and touched our family. We would ask that you continue to pray for Brooke, her doctors and nurses, and for the tumor on her kidney and its extension to continue/begin to improve.

Wednesday, March 24, 2004 9:40 PM CST

We did return to the office on Friday, and Brooke's ANC was zero. With an ANC of zero, she has to avoid large group settings and contact with anyone who is not feeling well. Despite her ANC (which was not unexpected) the staff confirmed that Brooke could travel to Lexington this weekend. The basketball team that Morgan plays on was participating in the AAU State Tournament and Brooke was determined to make the trip. We left Friday afternoon late. Fortunately, she did not want to go to the games (too loud, she said) but wanted to hang out in the hotel and go to the pool. I am happy to say that she was able to do both. She had a lot of family visitors over the weekend and was able to put her feet in the pool on Saturday afternoon. Sunday was a good day for Brooke, but a bad day for Morgan's team (Lost 31-30) and for UK. On Monday, Brooke returned to the office and her ANC was still zero and her hemoglobin was 8.1.

Tuesday was Brooke's 5th birthday. At noon, her preschool classmates came to the house, sang "Happy Birthday", ate cupcakes, broke a pinata and sent balloons to heaven with wishes for Brooke's good health. One of her classmates even said the prayer. That afternoon, several of our former neighbors stopped in to wish her a happy birthday (Erika, Carmen and Wes) and Bryan's folks came in from northern Kentucky. My brother also came in that evening and two of Brooke's friends from our neighborhood came over (Savannah and Kara) too. She had a great day and was in bed at 9:30. At 10:15 I heard footsteps from upstairs and it was Brooke proclaiming that she really wasn't tired yet. She stayed up with us and we watched an Andy Griffith rerun and had another piece of birthday cake until 11:30 PM. She truly had a memorable day!

Today she received a few other birthday surprises:

1) Her ANC jumped to 1,600 and her platelets were 105,000. Both numbers are great enough that she can receive Round Two of her chemotherpay next week and we expect that she will be admitted Tuesday - Saturday.

2) Her hemoglobin that had been steadily dropping, increased slightly to 8.2 and she did not require a blood transfusion.

3) Brooke repeated her chest x-ray this morning and the results were much improved over last week. We really need to discuss the results with Dr. Soni before we try to interpret, but it does appear to be a step in the right direction.

Lastly and most importantly, Brooke is scheduled for an abdominal ultrasound Friday morning. This may give us a preliminary indication as to what type of response to expect. Generally, they prefer to scan or ultrasound after two cycles of chemotherapy and Brooke has only had one round at this point, but we are still hopeful that we may see progress.

Thank you for all of your support and prayers during the past two months. Please continue to pray for Brooke and I will update you as soon as we receive the results from the ultrasound.

Wednesday, March 17, 2004 10:21 PM CST

As expected, Brooke was admitted to Kosair's on March 9th. Her hospital stay went as well as you could expect. She received Etoposide and Cyclophosphamide each day for five days. Both agents are given intravenously over one hour. In addition to the two hours of chemotherapy each day, Brooke was given Zofran (anti-nausea), Medsna (to prevent bladder irritation from the chemo) and IV fluids continuously. The good news is that she tolerated her treatments very well and did not get sick, she ate fairly well, and she even ventured out of her room to look at the playroom and sat in the Family Room down the hall. This is important only because during each of her previous stays at the hospital, she has never left the room until time of discharge. With the road ahead and more admissions pending, it is nice to think that she may be getting a little more comfortable with the surroundings and the staff. The bad news was that because of all of the fluids she was receiving, it was impossible to rest. Literally, she went to the bathroom every 60-90 minutes, day and night. Also there were real concerns about her heart rate because it was so elevated. On Saturday, the pediatric nephrologist, ordered an EKG and chest x-ray. We were told that the chest x-ray showed some fluid in the lungs, but was improved from January. The EKG, however, suggested that there may be some enlargement of the right atrium of the heart. To find out exactly what was happening, an echocardiogram was scheduled for Tuesday. Following the tests, chemotherapy, and required fluids, Brooke was discharged at 6:30 Saturday night.

Sunday we celebrated Mom B's birthday in grand style. Her birthday was actually on March 9th, but we were under strict instructions from Brooke to wait for her to get home for any party. Brooke even helped to make the birthday cake!! Monday she had a full day - a trip to the river with Grandad to see the boats and eat McDonald's, Kara came over after school, and the Merrifield and Wilson families came over that night too!!

Tuesday Brooke had the echocardiogram and the news was all good. No tumors in the heart, the chambers of the heart were of normal size, and the contractility of the heart was normal. Brooke also had to repeat the chest x-ray and there was no change from the x-ray on Saturday. The nurse practitioner said that she should repeat the x-ray again in one week. They want to follow the trend. Is there more fluid building up in the lungs or, my personal favorite, is it getting better? Brooke will repeat the x-ray on Wednesday, March 24th before her regular clinic appointment.

As for her appointment in clinic today, things went fine. Her weight is holding fairly constant and her heart rate and blood pressure were good. One area that always receives a lot of attention is her ANC. The ANC generally tells you how strong her immune system is at a given time. Over 1000 is good, and there are no special precautions. Under 500, you must be very careful about large group settings like ball games and church and if she gets a fever when her ANC "counts" are low...it is an automatic admission to the hospital. Well, Brooke's ANC today was zero. This is to be expected, and she is receiving daily injections to boost her counts. Unfortunately, the injections only help to build counts more quickly...and right now there is not anything to build on. It may be several days and through the weekend before she rebounds. Brooke is scheduled to go back to clinic on Friday to check her bloodwork again and see if she has gone up any.

Lastly, our entire family would like to thank three very special 3rd and 4th grade friends of ours. Today, Joey Bloomfield, Logan Baechler, and Jack Werner each shaved their head in honor of Brooke. Their school, St. Albert the Great, sponsored a St. Baldrick event that benefits CureSearch which is a division of the National Childhood Cancer Foundation. They each found sponsors and 94 percent of the proceeds go directly to research. If you would like to contribute, you can make a check payable to "St. Baldricks" and mail it to Holly Bloomfield at 7508 Greenlawn Road, Louisville, KY 40242. Additionally, if you have any questions, you can contact Holly at Hollybloom@aol.com or go to www.StBaldricks.org. PLEASE do not feel any obligation, but so many people have asked us how to help.

Again, we would like to thank each of you for your support. We continue to be amazed and humbled by your kindness and we would ask that you continue to pray for Brooke to be cured.

Monday, March 8, 2004 8:29 PM CST

Bryan and I met with Dr. Soni on Friday. The new and revised plan has been decided on, and as expected it is much more aggressive. Dr. Soni consulted with Dr. Daniel Green, Chairman of the National Wilms Tumor Board, and Dr. Green recommended the treatment protocol that will be followed for Brooke. The protocol involves four cycles of inpatient chemotherapy over a twelve week period. In general, she will receive her treatments in the hospital and then go home for two weeks to allow her counts to recover. Brooke will be admitted to Norton Kosair Hospital on March 9th for the Cycle One. The plan is as follows:

Cycle One (Week Zero): Five day stay taking Etoposide and
Cyclophosphamide

Cycle Two (Week Three): Same as Cycle One

Cycle Three (Week Six): Three day stay taking the drugs
Carboplatinum and Etoposide

Cycle Four (Week Nine): Same as Cycle Three

After the chemotherapy cycles, the results will be assessed by ultrasound and CT scan. If the tumors have shrunk to an appropriate size she will undergo surgery to remove the final tumors, somewhere around Week Twelve. Getting the tumors out would complete Step One.

Step Two would focus on prevention of recurrence. We have discussed options including more chemotherapy, high dose chemotherapy with stem cell rescue, and radiation all as ways to limit the liklihood of the tumors returning. It is probable that Brooke would need two out of the three options. Dr. Soni seems to favor high dose chemotherapy with stem cell rescue and radiation. We still have many questions about all of this, but we will have to cross that bridge when we get there. Clearly, we have so much to do before we get to the point of deciding on that issue.

Please continue to pray for Brooke and that this plan will prove to be the answer for her.

Wednesday, March 3, 2004 12:51 AM CST

I wish that I had better news to report. Brooke had her appointment with Dr. Soni this morning and unfortunately there is little change in the size of the tumors since she began on January 15th. The primary tumor on her kidney is essentially unchanged. The tumor on her liver is also essentially unchanged. There is minor improvement in her lungs, but Dr. Soni was quick to say that it was "minor". Apparently, a couple of small tumors that were in her lungs are now gone.

So what do we do? Dr. Soni has attempted to contact Dr. Daniel Green, Chaiman of the National Wilms Tumor Board. Unfortunately, he is out of the country, but returning late tonight. Dr. Soni is confident that he will speak with him tomorrow about Brooke and get his expert opinion. Additionally, Dr. Soni has consulted with the senior partner in Brooke's group, and they both agree that she should be moved to the next most aggressive protocol. We don't know anything really about what the protocol involves yet, other than it adds two new chemo agents. Regardless, Dr. Soni said that he would put together the new, revised plan and email us with that information by Friday. For today, though, Brooke did still receive one chemo agent...one that would also be a part of the revised, more aggressive plan, should that be the decision. We expect that we will move forward with the revised plan on Wednesday at her next appointment.

Overall, Dr. Soni said that he is disppointed and would have liked to have seen a 50% reduction in tumor size today. However, he does remain optimistic for Brooke and we would ask that you do the same. PLEASE CONTINUE TO PRAY FOR HER AND DR. SONI!

Wednesday, February 25, 2004 9:23 PM CST

Today has been a positive day for Brooke:

1. Brooke was able to get her chemo as both her platelets
and ANC numbers were high enough. Her platelets were
over 500,000 (need to be over 100,000) and her ANC which
had been 600, skyrocketed to 4,300 (needs to be over
1,000).

2. Her weight was really up. In the past two weeks, she
has regained 4.4 pounds. Despite her weight gain, the
nurse practitioner said that she should continue on
Megase, the appetitie stimulant.

3. Brooke also received a unit of blood at the hospital
following her clinic visit. Her hemoglobin continues
to run low and they expect that this will boost her up
a bit. Today's transfusion should increase her energy
level and decrease her heart rate. They scheduled her
back in the clinic on Friday morning to confirm that
her hemoglobin has improved.

4. She has two important test scheduled for Monday, March
1, 2004:

a)Abdominal ultrasound at 9:00 AM to check on the blood
clot from her February 2nd admission. Her urine in
the office today showed only a trace of blood which
is good, but the ultrasound will confirm if it has
passed completely or not.

b)CT scan of her pelvis and chest at 2:30 PM to gauge
her progress with the tumor. The nurse practitioner
we spoke with today indicated that we would not get
the results, however, until our regular visit with Dr.
Soni on Wednesday morning.

Brooke certainly had a terrific visit today and we feel very fortunate that she has received such great care to this point. We also are very thankful to each of you for your love and support. We could not have reached Week Six as easily without all that you have done. Please continue
to pray for a GREAT SCAN on Monday!

Friday, February 20, 2004 9:42 PM CST

All things considered, today went well. Brooke had her appointment this morning to check her blood and everything was alright. Her hemoglobin actually went up from 7.8 to 8.1. Apparently, if the hemoglobin drops to "around 7" they begin talking about a blood transfusion, so we were very happy to avoid having to do that.

They also checked two other areas pretty closely...her ANC and her platelets. This Wednesday she is scheduled to receive a drug (Dactinomycin) that will affect her counts, and the "rules" state that her platelets must be greater than 100,000 and her ANC must be greater than 1,000. Good news - her platelets were over 500,000. Not so good news - her ANC was still at 600. We are obviously hopeful that her ANC will increase, and she will be able to get her chemo Wednesday. The nurse told us to just head home and have a "quiet weekend." She is so nice to Brooke.

Personally, Brooke is doing a little better each day. Her appetite continues to be strong and she has not been sick since Sunday. During the day, she has begun to play with some of her new treasures...coloring books and puzzles are popular right now. Most importantly, she is much more talkative and affectionate. Yesterday as I left the house, she asked me if I had forgotten anything...she said that she had not given me a kiss goodbye. Too sweet!!

Wednesday, February 18, 2004 10:14 PM CST

Today was another interesting day. We started with Brooke's regular appointment at the clinic. Thankfully, her weight was UP a little from last week and they gave her the vincristine (chemo). We also learned that the "big day" for Brooke will be March 1st. Dr. Soni has her scheuled for an ultrasound and a CT scan that day to assess the progress. On the down side, her counts were low with an ANC of 600, so she is in a gray area in terms of her immune system. They have scheduled her to come back on Friday to check her blood again and we will see how she does.

On top of that...Kristen is a little under the weather. Last night shortly after she went to sleep, we heard her coughing and stuggling a little upstairs. We brought her into our room for the night and scheduled an appointment for her this afternoon. The diagnosis for Kristen was croup. I called the on-call oncologist and he suggested that she spend 4-5 days with grandma and granpa because Brooke's immune system is so low. At this point, Kristen does not have a fever and seems to be doing pretty well. We are hopeful that we moved quickly enough to insure that Brooke doesn't catch anything.

On a brighter note, after today's appointment at the clinic, Brooke was able to go to Holy Trinity and take her readiness test for kindergarten. It was a joy to see her at school and Brooke says the test was "too easy!"

Monday, February 16, 2004 2:21 PM CST

Brooke has had one additional admission to the hospital. In retrospect, it was not a big deal, but it was stressful in its own way. On Sunday, February 1, Brooke complained that she could not get her "pee pee" out. When I wiped her, the tissue was blood red. I phoned the oncologist on call and he recommended that we come to the hospital. At midnight we dressed her, and Brooke and I picked up Grandad for the trip to Kosairs. The doctors began IV fluids, suspecting that she might have a urinary tract infection. At 5:00 am, when we were able to collect the first urine sample, it was completely filled with blood. I couldn't believe my eyes, but was relieved to know that Brooke was more comfortable having emptied her bladder. Gradually, her urine returned to a more "normal" color and we began to believe that she had passed a blood clot and all was well. The next morning, Brooke went for an ultrasound of her abdomen to confirm that all was clear. Unfortunately, they found another suspicious spot on her bladder. There was some debate as to whether it could be just another blood clot, a cyst, or more Wilms tumor. The oncologist called in a urologist, who recommended that we run IV fluids for 48 hours and then do a follow up ultrasound on Wednesday afternoon. On Wednesday, we found that "it" was somewhat smaller. On Thursday, the doctors concluded that "it" must be just a blood clot and Brooke could go home and pass the clot on her own.

Independent of the whole blood clot issue, Dr. Soni (Brooke's primary oncologist) ordered a CT scan of her abdomen to get an early view of our progress vs. the tumor. Because of the extensive nature of the tumor, he has had concerns that he may need to be more agressive with her treatment plan. Thursday morning, Brooke went for the scan and they told us the results would be available before her discharge that afternoon. When the on-call oncologist came to discharge Brooke, the results were not overwhelming. The tumor on her kidney had shrunk 2 cm in each direction, other areas showed minimal change, and her inferior vena cava looked different from the original scan in January. The radiologist gave three possible explanations for the change in the inferior vena cava - blood clot, thrombus, or tumor extension. While he said that blood clot may be the most likely, we couldn't help but notice the one about "tumor extension." We left the hospital that afternoon with mixed emotions.

Dr. Soni emailed Dr. Daniel Green, Chairman of the National Wilms Tumor Board, for a second opinion. Dr. Soni asked him if we should consider adding another chemo drug or radiation. Dr. Green confimed that we should stay with the original treatment plan and not add another drug or radiation at this time. Generally, a scan of this type is not done until after the 5th or 6th week, so it was difficult to gauge the results.

Brooke has now completed Week Four of her treatment and is to be scheduled for a very important CT scan on March 1,2, or 3rd.

In other ways we have seen improvement. 1) Her stomach appears smaller. Last week at the clinic visit, Dr. Soni asked if we had felt her belly. I told him that I had not touched her stomach since he made me three weeks prior. He commented that I should touch it because she is doing "much better."
2) Her appetite has improved dramatically. She began taking Megase, an appetite stimulant, a couple of weeks ago and it is working. She eats a lot in the morning and gradually slows throughout the day. Unfortunately, she has had some difficulty keeping it all down, but we are happy to see her interested again.
3) Her strength has improved. She seems to be making it up and down the steps more easily.
4) Her spirits and her personality are returning. She spent the night with Morgan in Morgan's bed last night!

Wednesday, February 11, 2004 10:24 PM CST

Brooke was diagnosed with Wilms Tumor on Tuesday, January 13, 2004. Most of you know the story...Brooke had not been feeling well for a couple of weeks. We were sure that she had some sort of virus. At first, she had no real "symptoms". Then she began with a low grade fever and a few times at night her pajamas were soaked with sweat. Just a fever breaking, we rationalized. We had several appointments with our pediatrician and nothing obvious showed up. Her blood work was normal, nothing in the urine culture and not strep throat.

On December 29, Brooke went for a chest x-ray. Our pediatrician suspected it would also come back negative as he could not hear anything in her lungs and she was not coughing. However, we were delighted to find out the diagnosis - pneumonia. Brooke was treated with an antibiotic for five days. We called that Friday to say that she did not seem "that much better." Our doctor explained that the medicine would work for ten days and to check back with him then if she still did not seem better. We called back in nine days and he explained that pneumonia sometimes takes awhile and it is not unusual to treat with a second round of antibiotics. He suggested that we start her second round of antibiotics on day eleven, January 8th. Brooke took the medicine for five days with little improvement. By this time, we were so concerned and Bryan brought to my attention the final symptom we needed - her stomach looked enlarged.

I called a friend of ours from church that evening who is an allergist (and pediatric trained) and asked for his opinion. He called another parishioner/pediatrician from Brooke's office and he said he wanted to see her the next morning. We took her in, and as expected, he sent us to Kosair's Childrens Hospital for lab work and a CT scan of her abdomen. We arrived at the hospital at 11:00 and by 1:00 all of the tests were complete. Finally, at 2:15 a nurse called us back to talk with the doctor. She had tears in her eyes and I asked if Brooke should stay with Grandad. She didn't really answer, but she really didn't have to for us to know that something was wrong. We left Brooke with Grandad and waited in the exam room for another fifteen minutes. Then our pediatrician from church walked in to deliver the news - Wilms Tumor, Stage 4.

This type of tumor always begins in the kidney, but unfortunately for Brooke, it had spread to her liver and both lungs as well. Then a pediatric surgeon came in to explain that we needed to get a biopsy of the tumor asap to determine her treatment plan. He told us that there are "favorable" cells that respond nicely to treatment and other cells that are more difficult to treat. Within ninety minutes, Brooke was having her biopsy done. By 7:00 that evening, she was in her room at Kosairs. Wednesday morning, they inserted a central line in Brooke's left side. Later that evening we received the information that we had been waiting for - the biopsy showed "favorable histology." On Thursday, January 15, she began her chemotherapy. Brooke stayed in the hospital until Sunday.

Fortunately, the treatment plan for Brooke is designed to be mostly outpatient. The protocol is designed to last for 24 weeks. Each week she receives her chemotherapy at the doctor's office (Wednesday). At week eleven, if the tumor is small enough, Brooke will have surgery to remove the remaining tumor. Then she will have twelve more weeks of chemotherapy to prevent recurrence.

Wednesday, February 11, 2004

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