History

Journal History

Sunday, April 22, 2007 10:02 AM CDT

I know it’s been awhile since we have updated, but life sometimes doesn’t allow much free time. We have been trying to live life enjoying the memories that our beautiful Brittany left us with, but it is hard, very hard. A day doesn’t go by that she is not missed with a tremendous ache is out hearts, or tears in our eyes.

People say that time heals all wounds; I find that very hard to believe. All time does is allow you to bask in agony longer, hoping that someday we will be united again. Brittany may be in a better place, but we are not.

If dealing with this on a daily basis was not enough, we had to endure another heart ache. Our youngest son was in a very serious car accident on the 1st of April, and we almost lost him. He was in intensive care for nine day on a respirator and we had no way of knowing if he was going to pull through. His injuries were severe and numerous.

He was finally taken off the respirator and has started to improve a little every day. We were able to bring him home after 18 days in the hospital, and now our home looks like a hospital room, but what better place to recover than at home. He will be off his feet for quite a while. He has a fractured skull, four pelvic fractures, all the ribs were broke on his left side, his spleen had to be removed, his bladder was ripped and punctured, his lung on the left side was punctured and collapsed, and they did exploratory surgery because he was bleeding internally.

Our Guardian Angel Brittany must have been watching over him, because he should not have lived with the amount of damage that the car had. We are just so happy to have him here and on the mend, I had visions of having to put him next to Brittany when we first got the call, can’t even explain how that felt. Christopher was brought back by the Red Cross because the accident was so bad. He spent 16 hours on a plane flying back from Alaska, and was able to stay until Stephen was out of danger and doing better.

The only good that came out of this is we finally got to meet Christopher’s fiancée; they are getting married in August and were to come back a month early to help finish up all the final arrangements for the wedding. Her name is Holly and they make a great couple.

I guess that’s it.
Brian

Friday, November 24, 2006 7:52 AM CST

Happy Birthday Sweet Angel,

How we cherish the day you were born. It is unbearable to think of another birthday without you, yet here it is.

We pray you are enjoying the peace and joy you so deserve. Your peace gives us some comfort through our pain, but truly we will have no peace until we are together again. So in the mean time precious Brittany, be happy and keep an eye out for us. From what I hear, to you our time apart will seem like moments not years, for this we are so thankful.

With Everlasting love,
Mommy, Daddy, Christopher & Stephen

Sunday, May 14, 2006 4:41 PM CDT

Dear Friends,

Happy Mother's Day to all the wonderful ladies out there. I just wanted to update since it has been a while and we have had a few e-mails worrying about my health. I am doing fine, I had my last major surgery several months ago and it appears the chemo worked.

I am overjoyed to say I am working at the Children's Cancer Center as the Financial Director. As many of you know the Children's Cancer Center is a support center for children and their families that have cancer or other blood disorders. They truly have been there for us every agonizing step of the way. I can not begin to express how thankful I am to be given the opportunity to be part of such a wonderful organization.

On to the men in my life, Brian is still working and was recently promoted at the cemetery were Brittany is laid to rest. He continues to help families through the difficult ordeal of losing a loved one. It takes a special person to do his job and he is exceptional at what he does.

Christopher is in the Army, stationed in Alaska. He just completed training as a helicopter mechanic and seems very happy. Of course we are very proud of his choice and pray for a peaceful world.

As for Stephen he is graduating next week! He continues to volunteer at the Children's Cancer Center and he hopes to become a Child Life Specialist, he will be starting classes in the fall. He, as always is such a sweetheart and we are so proud of how he has conducted himself through all of this.

Well, that is the scoop. We continue to long for our precious Brittany and can only hope we are making her proud by our actions. We hope all is well with all of you, and thank all of you for your care and concern.

Love,
Patty

Friday, November 25, 2005 8:15 AM CST

Dear Brittany;

Today is harder than most, because today you would be turning fourteen. I remember the day that you were born; it was by far one of the happiest of my life, a day that would forever change me. I was to experience joy like I had newer seen, but pain was soon to follow. You were one of a kind and I was so proud to be your dad. You always made us laugh, even though you were is so much pain most of the time. You only had to walk into a room to change the mood, you had a way about you that made people notice you and fall in love with you. Every day without you is torture beyond belief. We talk about your antics every day as we try to continue living our lives the way you would have wanted us to, but it's so hard without you. We miss walking into your room and seeing you lay there with Blizzard and Mickee, we miss going to the beach just to watch the sun set. We took so much for granted because we thought you would always be with us, now the reality is so painful, you were not meant to be here long, you were meant for a greater purpose, a purpose that is beyond our comprehension. I can only hope that what most believe about heaven is true, because that’s the only way that we can continue without you.

It's hard to go on everyday unless we believe that we will once again be together in a happier place. If the joy that we experienced here with you is any indication of what lies ahead, than heaven will truly be a wonderful place.

Happy birthday sweet baby, we love you and miss you.

Love Daddy, Mommy, Christopher and Stephen

Friday, September 2, 2005 10:06 AM CDT

Dear Brittany,
It seems impossible that two years have passed since Heaven was graced by your presence and we were robbed by Heavens gain.

We wish we could say time has made a difference, but no length of time could ever minimize the loss of you in our lives and the horror we saw you go through.

The only comfort we have is your peace and joy in Heaven. We know you are the most beautiful Angel ever. You will forever live in our hearts and have a place in our lives.

We miss you more than words could ever express, so until we meet again please continue to fill us with the strength we need to wander this earth without you.

Love and Miss you,
Mommy, Daddy, Christopher and Stephen

Wednesday, January 9, 2005 2:17 PM CST

This past holiday season we were blessed with a precious gift from an incredible family. Since Brittany’s passing the Oakleaf Family took on the incredible task of putting a bench in Northdale Park honoring Brittany. This park was next to our neighborhood. Brittany loved it! When I go there I can see her running around like the nut she was and just being a little girl.

We knew nothing of there efforts, but Donna (Mom) worked diligently to get the exception made to put the bench in a county park. She raised a large sum of money to pour a slab, buy this beautiful bench and a large planter with an oak tree behind it. And let me tell you this is no ordinary bench (check out the photo album). She wanted the bench to be as unique as Brittany and she succeeded.

We are grateful beyond words to the Oakleaf Family and all who donated and helped. We are so fortunate to live in such an exceptional community. We hope every time someone looks at the bench they realize how special Brittany was and feel the love that went into this memorial.

As always, we continue to pray for the special children touched by cancer and the heartbroken families forced to live out their days without their children.

With Love and Thanks,
Patty, Brian Christopher, Stephen and Angel Brittany

Friday, December 17, 2004 9:26 AM CST

Dear Friends and Family,
We wish you a beautiful holiday season and as always thank you for your love, support and prayers during this difficult journey of adjusting to life without our Angel.

Love and Best Wishes,

Patty, Brian, Christopher, Stephen and Angel Brittany

Thursday, November 25, 2004 10:29 AM CST

Dear Brittany,
Happy Birthday beautiful angel. We cherish the day you came into our lives and are thankful to be your family.We pray your birthday, as every other day is full of peace and happiness. We miss you more than words can express.

Love you forever,
Mommy, Daddy, Christopher and Stephen

Saturday, November 6, 2004 8:35 AM CST

It seems like an eternity since I have updated Brittany’s site. These last few months have been a blur of mixed emotions. We find ourselves in a situation where we almost have to move. Patty is just having such a hard time being home alone in the house, she cries all the time and feels like this house is just so cursed. I have to admit that since we have been in this house a lot of bad things have happened to us.

We have been looking for a new home that we would be able to possibly get some type of a fresh start. Along with this comes all the guilt, having to leave all the memories which at this point in my life seems to be the only thing that I have to connect with Brittany. I look at the couch in the family room and I see her there, I look at the steps coming down from her room and I see her walking down them every Christmas morning looking for her presents. I see her swimming around in the pool with her friends, I see her in the game room playing pool and yelling at her brothers because their cheating. This is what I have to give up moving from this house and I don’t know if I can do it.

I realize that Patty has wanted to move from the very beginning and has tried to make it work here, but it is just too hard for her. In a new house there will be no memories of my beautiful Brittany, It would be a sterile environment as far as she was concerned, I try to tell myself that she is with us no matter where we go, but I guess I need these triggers to help me try to remember everything I can, I seem to need something to help get to the good memories, there seems to be so many bad ones the last three years. I’ve been told that all the bad ones will fade and only the good ones will remain, but I guess I’m not there yet.

This month is Brittany’s birthday; she would have been a teenager 13. I can’t help but to try and figure what she would be like now, how she would look, how she would act, the path she was on leads me to believe that she would have been one hell of a beautiful girl with so much love to give. Not only do I feel robbed of her but I believe that everyone else who never got to meet her was robbed in some way also. She was an inspiration to me and I can only hope that I can live my life in a way that would make her proud of me. I am because she was!!!!

Patty medically is doing alright. She just had another surgery and everything is healing nicely. We have one more to look forward to and then with any luck this chapter will be closed and sealed forever. The boys are both working and going to school. The both have girlfriends, who are both girls that have been in and out of our lives for along time. I always told Patty that I was afraid that when the boys met someone and wanted to settle down, their girlfriends would not have ever known their little sister, and the bothered me a whole lot. But both of these girls have been around for along time. You never know what will happen, but at least these girls knew and loved Brittany.

Take Care
Brian

Wednesday, September 1, 2004 9:28 PM CDT

We would like to express our thanks for your continued thoughts and prayers as we approach the first of many agonizing years without Brittany. We added several new pictures to the photo album to give a glimpse of the beautiful angel she was on earth and remains in Heaven.
Thanks again,
Patty

Letter to Brittany:

Dear Precious Brittany,

It seems impossible that we have managed to survive a year without holding you in our arms, hearing your sweet voice or seeing your beautiful smile, but we hold you responsible for giving us the strength to do so.

We cherish the 11 years we had with you, but will never stop longing for more. You are part of every breath we take, so until we meet again you will live on in our hearts and through our lives. The bond of love we share can never be broken, nor can time ease our pain.

With Love and Broken Hearts,
Mommy, Daddy, Christopher and Stephen

Friday, June 11, 2004 8:55 PM CDT

Just a quick note to say hello. We want to thank all of you for your thoughts and prayers the last few weeks. Thankfully Stephen is doing great. I am on the mend now that my baby is better.

As summer kicks up bittersweet memories of our road trip a year ago come flooding back. We are so thankful for that time together. We hope all of you make the best of this summer with your family and friends. Take Care.

Love,
Patty

Tuesday, April 27, 2004 9:39 AM CDT

It appears that nothing is going to normal around our household for a long time. I guess we were never meant to have any peace or to be able to live our lives out quietly and just try to coupe with all that has happened.

Patty had her surgery the 15th of April and all seemed to be going good, that was when we apparently let our guard down because that was when all hell broke loose again. She was released from the hospital far to early in my eyes, but I don’t have that medical degree hanging on my wall so who am I???? She came home on a Sunday night and had six drains still in place when she left the hospital. She was in so much pain and unable to get comfortable, after all this was a pretty major surgery. Each day she declined more and more until we had to go to her doctor and they had to admit her again. She was in pretty bad shape, unable to eat or drink anything, dizzy (more than normal) nauseous and very weak.

So once again we were back in the hospital where we should have stayed in the first place. After several days in there she started to look moderately better and she felt 100% better. So I was off to work again hoping that I would be able to pick her up on my way home.

Late that mourning I received a phone call from my oldest son Christopher, he said he and my other son Stephen were in a car accident but everything was all right. Ten minutes later I was on my way and called them back on their cell and found out that they were going to the hospital in an ambulance. When I got to the hospital Christopher looked a little banged up with some cuts and bruises, but Stephen looked fine. He had a mark from the seat belt and his chest was sore, but that was to be expected with the type of accident that they were in.

Christopher was released and Stephen had some x-rays of his chest to rule out any thing broken in there. All looked fine until they gave him some morphine for pain. He started acting weird and kept saying he didn’t feel right. The doctor reexamined him and said we should do a ct scan on his abdomen. Well this showed he had ruptured his spleen and it was bleeding inside. All of a sudden doctors and nurses were all over him putting IV’s and doing all different things.

The end result is he is now in ICU at the hospital and has to be monitored closely because they try not to have to remove the spleen on children because it does have a function. Patty had to stay an extra day at her hospital because she needed to calm down. Now She is in a bed next to Stephen in ICU and we are once again faced with watching one of our children in a very critical condition. And guess what the kicker is, Stephen is in the exact same room that they used to put Brittany in. I hope she is in there taking care of Stephen and Patty.

Not much else so say right now.
Brian

Monday, April 19, 2004 7:10 AM CDT

Hi All,
Just a quick note. All went well with the surgery,we are very glad this huge step is behind us. There is a long road ahead but this was a big step. We came home Sunday evening. Thanks to those who helped us through these very difficult few days. Take Care.

Monday, March 29, 2004 6:57 PM CST

Hi,
Today is Stephen's 16th birthday. He had a party with his friends over the weekend and we will have a family party next Sunday. I can't believe my baby is 16!! I feel like the last few years have just flown.

This past January Brian told me he was having trouble swallowing. He felt an obstruction in his throat. As you can imagine I went crazy and forced him to go to the doctor. After several weeks of testing they found he has a tumor on his thyroid. I know this is pretty common, but nothing in our history led us to think this was anything other than cancer, so I insisted on a biopsy. He had a needle biopsy done that was inconclusive, because they had a very hard time getting cells. The good news is what they did get looks OK; there is just a minimum amount of cells they have to get in order to have a conclusive result. Needless to say we are relived, but he still needs to have the thyroid removed to thoroughly biopsy it and help him swallow.

It's amazing that after all we have been through that we or I should say I was just a mess with worry. We are just so drained and the though of another battle is unbearable and cruel. Hopefully he will have surgery in a few weeks. I wanted him to do it immediately but he wants to wait until after my surgery on April 15th. The doctors we have seen are not to concerned they recommended we just watch the tumor indefinitely with sonograms, but I want it gone.

I'm still struggling with nerve damage in my feet from the chemo, constant pain is draining. But I try to keep going for my boys, even when I can't stand another moment without Brittany I realize I also can't bear the thought of causing them anymore pain. Hope all is well with you and your family. As always thanks so much for checking on us.

Love,
Patty

Monday, February 23, 2004 7:39 PM CST

It’s been six months since my beautiful angel Brittany was taken from me, and it does not seem to be getting any easier. I see her in the sunshine on a warm spring day, I see her in the clouds that are moving ever so graceful over head, I see her in the trees as the breeze blows the branches and makes the leaves fall to the ground. I know that everything beautiful is that way because she is now part of it, but yet my sorrow and hurt is still so deep and raw. I miss her so deeply that my heart aches every night when I go to sleep, and every morning when I wake and realize that she is truly gone I can’t imagine going through another day with out her.

I feel as if my heart has been broken into a million peaces and as hard as I try to gather all the peaces and put them back, I find to many are missing, and each little peace that is missing is the source of so much pain and hurt. I can’t ever imagine being completely whole again. I see her in the smiles of her brothers and in Patty’s face, but that’s not enough for me, I need to be able to hold her and to reach out and touch her, and to hear her voice again. I find it almost impossible to not be thinking about her at any given moment of the day.

I pray that there truly is a GOD and that this was done for some reason that I am not able to comprehend, there has to be a reason that us as parents should be expected to give birth to such a beautiful and inspiring young lady, and then have all that we love and care about ripped from our protective and nurturing hands only to be left with a tremendous void that can never be filled. Is there really something else waiting for all of us, or are we just kidding ourselves by pretending that death is not the end all to this short life that we try to hang on to. It just seems too convenient that we have to believe that this is not all we were put her for, that there is more and what lies ahead is greater than what we have here. It sure sounds great, but is it true??? I SURE HOPE SO.

Brian.

Sunday, February 1, 2004 8:52 PM CST

Hi,
Hope all is well with you. We have been pretty busy lately trying to catch up on things around here and attempting to move in a forward direction. Brian is working, so that is has been very different for us to not be together as much. I am happy for him, and think he is ready and comfortable leaving me now that my chemo is done.

Christopher bought a car, and is still looking for work that the hours fit around school. School is going great! Stephen is doing good, getting his fill of the mall and movies.

We started going to Bereavement group a couple of weeks ago. We have only had one meeting but I think it will be helpful. It seems the more time passes, the worse we feel to some degree. I think we are only just coming out of the fog we have been in. The mind is a powerful thing, it seems like we are slowly digesting the realization that Brittany is gone. We still spend a lot of time in her room, looking at and touching her things, smelling her clothes and desperately trying to find comfort. Unfortunately there is still very little comfort. I do believe she is safe and happy in Heaven, for that I am grateful. We are the ones in pain and I accept that pain for her comfort, but how we miss her and long for what will never be. Some days the pain is so unbearable we are basically unable to function, then we look at each other and realize we have find a way to do this, as much as we don’t want to most of the time we have to do it for Brittany. She would be devastated if she took happiness from us, we hold on to how much she loved life and fought for it.

So that’s how things are. I'm starting to feel like I have a little more energy. Unfortunately I have a lot of pain and numbness in my feet,I seem to have nerve damage from the chemo. The doctor said it may or may not be permanent, we have to wait and see. My hair, eyebrows and lashes are starting to grow back, so I look a little more human. I still haven’t scheduled my double mastectomy, maybe late spring. The last thing I feel like doing is having more surgery, but it is necessary to prevent this from happening again. Actually Brian and I wanted the mastectomies done after my first cancer nine years ago, but at that time several doctors and the insurance company shot us down. Well that’s all for now. I want Brain to put some baby pictures on the site so keep a look out for those. Take care.

Love,
Patty

Monday, January 5, 2004 10:04 AM CST

The holidays have left us and we are trying to get back into a normal routine. It was the worst holiday season that I ever hope to have, I know that it was a bunch of firsts, but somehow I don’t think that next year or the year after will be any better. A lot of effort was put into making things different, but somehow it always came back to it was just a holiday without our precious Brittany. Don’t get me wrong, there was some great times spent with great friends, but during down time it would all come flooding back the reason why we were away.

The boys start school this week, so they will have the distraction that they need to get back into their routines. Patty goes to the doctor to see what her next step will be, and hopefully set a date for her surgery. I’m in the process of looking for a job to get back to work, it’s been a long time that I’ve spent home with my family, but I am so happy I did, or I would have missed so many precious moments that we were able to experience together. I always said that I never wanted to regret a decision I made about Brittany’s care, that included being there with her throughout this hellish ordeal. I regret a lot of things that I have done in my life, but being here and caring for her every day will never be something that I will ever question.

This is going to be a quick update, but I’ll try to get more down in the next few days.
Please keep praying for all the children that continue to have this disease that keeps them forever battling for their lives.

Brian ^j^

Friday, December 19, 2003 8:55 PM CST

Dear Friends and Family,
We escape tomorrow to the Condo in Crystal Beach, Florida. I am so thankful we were able to use one of our bonus weeks from the timeshare we bought years ago. Buying the timeshare was one of the best decisions we have ever made. Over the years it has afforded us the opportunity to go to so many nice resorts and interesting places. Along the way we have made so many beautiful memories together and enjoyed each otherÂ’s company immensely. As we look back over the years we spent with Brittany, we can honestly say we made the best of our time together, but I guess that is what makes being without her all the more painful.

We hope this holiday season finds all of you well. We pray you take the time to enjoy your family and friends and savor the simple pleasures of being together. As hard as this year and every year until our last breath will be, we are thankful for each other and for you. Happy Holidays.

Love,
Patty, Brian, Christopher, and Angel Brittany

Friday, December 12, 2003 3:52 PM CST

It’s been over a week since Patty has finished her last chemo treatment and all I can say is thank god. It’s been a long haul for all of us but especially Patty, she is such a trooper to have dealt with this the way she has. Since she was released from the hospital she has been doing pretty good, she is still very tired and run down but at least we can deal with that.

Physically the hardest part of all this is now in the past, but we still have to emotionally deal with this and try to find a way to go on and live our lives like Brittany would want us to. The holidays are just to painful to deal with at home, so we decided to go away for Christmas and try to do something different. We rented a condo on the beach and will have some friends over throughout the week of Christmas and see how we do. There is just no way I can wake up Christmas morning at home knowing my baby isn't there. Everything we read on bereavement says to do exactly that so we are willing to give it a try. The boys have very mixed feelings about the upcoming holidays, it’s still Christmas but it Christmas without their little sister.

I want to thank everyone who continues to keep up with our family and sign our guest book. Our friends have been such an incredible source of strength for us to draw upon; I can’t even begin to conceive how we would be able to do this without them. Cancer truly sucks, but the bonds you form thru this are unbelievable. It truly says a lot for humanity when so many are able to give so much because of a common bond that can be so devastating but at the same time offer so much comfort that all in this situation can draw from.

Take care,
Brian

Thursday, December 4, 2003 8:18 AM CST

Well Thanksgiving is finally over and not one minute to soon. It really sucked this year, very little to be thankful for and a ton of things to make you want to rip you heart right out of your chest and end it all. We have always been told that the holidays are the hardest for people who have no families, and I now know why those are so hard. I still have a lot of family, but all it takes is to lose someone that was the cement who kept everything together, the one who kept everyone coming, and you suddenly are left with holidays that meant so much to holidays that are just pure torture.

Of course Patty felt really rotten and had for the last few weeks, the chemo is really having a cumulative effect on her. She pushed herself well beyond where she should have and ended up not being able to eat anything and getting sick all night. Just one more reason to really shun the holidays.

Patty had pushed herself so much that she ended up in the hospital a couple of days after Thanksgiving for various reasons. She was not able to stay awake hardly at all, and when she was awake she could not focus on anything so her vision was starting to be affected. After getting her into the hospital they ran some tests and concluded that she had an e-coli infection that had completely taken over her body.

I thought after what I had gone through with Brittany I would be able to deal with all that Patty is and will go through, but I am finding it increasingly harder to do this. I felt for so long that we had beat this thing with Brittany, AND WE DIN’T. I watched her go through every imaginable treatment and then some. Now I look at Patty and here we go again, we talk about her treatment a lot and we deal with it, but something inside me makes me back off just a little. I’m not sure why unless this is some new type of fear mechanism that I’m dealing with. I can’t stand for these doctors to tell you everything is going great when it’s not. I hate the way that your treated like cattle because you have to deal with a disease that scares the hell out of everyone, a little compassion would be nice once in a while.

Patty is one hell of a fighter, but she also is only a mother who just lost her daughter to this shitty disease that she now has to fight and tries to maintain some type of sanity. Starting off every birthday or holiday at the cemetery is a really crappy way of celebrating, but that’s what we’re left with to try and keep our precious daughter alive in our hearts and her spirit remembered. We know that Brittany is really not there anymore, but that is the body that she lived in and gave us so much joy from, that is our only earthly connection to out daughter, this is what we made as flawed as it turned out to be, but this is it. I feel much closer to her when I talk to her to her at home, but the cemetery has to play a role in our lives and we have to find a way for that to be somewhat comforting.

As we try to get our act together for the rest of the upcoming holidays, I’m reminded how many families that will be affected by this disease once again this year. All these children should be looking forward to Christmas morning, not their next chemo or their next hospital stay, surgery, lab tests, etc. It’s a cruel world that allows this to continue to happen year after year. So many of the problems that our world faces are self induced, like we already don’t have enough to worry about. These kids never had a choice; no good will ever come from any of these kids suffering, and yet we as a whole continue to ignore what is going on right in front of our own eyes. This cannot continue to happen, money is spent elsewhere when it should be spent right here on these kids future, our countries future. All these kids are unique they all grow us so fast and are wise beyond their years. These are the future dreamers and shakers that will be running our country, so lets give them a chance and keep them alive.

Brian ^i^

Tuesday, November 25,2003 12:05 AM

Tuesday, November 25,2003 12:05

Dear Precious Brittany,

Happy Birthday beautiful angel. How we long to see you and hold you in our arms again. We know this cannot be, so we pray you are having a bash of your own in heaven. You will be with us in spirit as we reflect on your short but full life. Continue to help us accept this painful reality. We love and miss more than words could ever express. Of course you know this, you now have wisdom and bliss beyond anything we could comprehend and that is the only thing we take comfort in. So celebrate your life today baby girl, for it was a life lived with purpose and should be cherished. Until we meet again the love, kisses and hugs we shared will have to hold us over. Remember you will never be forgotten, everywhere we are there you’ll be.

Love you forever,
Mommy, Daddy, Christopher and Stephen

Sunday, November 23, 2003 7:24 PM CST
Hello Everyone,
As Thanksgiving approaches and we reflect on what we are thankful for, I wanted to extend my families sincere thanks to all of you. You continue to encourage us and fill our broken hearts with hope. So many of you have been lifelines for us, wonderful friends and family that keep us going.

Tuesday would have been Brittany’s 12th birthday. We will always treasure the day we were blessed with her birth, the beginning of such a life changing relationship. We cherish every moment we spent with her, and are very thankful for the opportunity to be her family. So that is what we will try to focus on this Thanksgiving. As hard as it is not to feel robbed of the future, we must never lose sight of the gift she was and the joy we shared and still share with our sons. We hope you have a wonderful holiday and never take for granted the things you have to be thankful for.

Love,
Patty

Sunday, November 23, 2003 7:24 PM CST

Hello Everyone,
As Thanksgiving approaches and we reflect on what we are thankful for, I wanted to extend my families sincere thanks to all of you. You continue to encourage us and fill our broken hearts with hope. So many of you have been lifelines for us, wonderful friends and family that keep us going.

Tuesday would have been Brittany’s 12th birthday. We will always treasure the day we were blessed with her birth, the beginning of such a life changing relationship. We cherish every moment we spent with her, and are very thankful for the opportunity to be her family. So that is what we will try to focus on this Thanksgiving. As hard as it is not to feel robbed of the future, we must never lose sight of the gift she was and the joy we shared and still share with our sons. We hope you have a wonderful holiday and never take for granted the things you have to be thankful for.

Love,
Patty

Thursday, November 13, 2003 11:54 AM CST

Sorry it’s been so long since our last update, time just seems to have a different way of moving now. Patty is doing as well as she can dealing with these chemo treatments. We are on the down side now, only three more treatments until this hell comes to an end. Then we face the unknown again, no treatments and waiting to see if what she had gone through worked and got all the cancer.

Cancer has been such a big part of our lives for so long, and believe me it has sucked for just as long. I hope and pray that this is all that our family will have to endure for the rest of our lives. We have gone through so much and given up far too much to ever have to deal with anything like this again. We have been told by so many that this will make us stronger, but it has actually ripped me apart at my core and made me much more unsure and totally confused. I don’t think I will ever be able to deal with anything like this again.

Going into the holidays is defiantly starting to affect us, we had Halloween a couple of weeks ago and thought it wouldn’t be that bad, but after hearing all the kids outside running and shouting it just crushed me. My baby should have been out there running with all of her friends and just being a kid. I can’t explain the feeling you get when you go to the store and see a little girl about the same age as Brittany just walking around with her friends, it just breaks my heart over and over again. The holiday season will be filled with trips to the store, I just hope that we will be able to get beyond these feelings.

On a good note, Christopher our oldest son just took his entrance exam for school, we thought he should wait until after the holiday’s because it would be such an emotional time to try and study and deal with our family’s loss. He will start January 5th and be going for drafting.

Take care and keep praying for all the children still battling this horrible disease.
Brian

Thursday, November 13, 2003 11:45 AM CST

Sorry it’s been so long since our last update, time just seems to have a different way of moving now. Patty is doing as well as she can dealing with these chemo treatments. We are on the down side now, only three more treatments until this hell comes to an end. Then we face the unknown again, no treatments and waiting to see if what she had gone through worked and got all the cancer.

Cancer has been such a big part of our lives for so long, and believe me it has sucked for just as long. I hope and pray that this is all that our family will have to endure for the rest of our lives. We have gone through so much and given up far too much to ever have to deal with anything like this again. We have been told by so many that this will make us stronger, but it has actually ripped me apart at my core and made me much more unsure and totally confused. I don’t think I will ever be able to deal with anything like this again.

Going into the holidays is defiantly starting to affect us, we had Halloween a couple of weeks ago and thought it wouldn’t be that bad, but after hearing all the kids outside running and shouting it just crushed me. My baby should have been out there running with all of her friends and just being a kid. I can’t explain the feeling you get when you go to the store and see a little girl about the same age as Brittany just walking around with her friends, it just breaks my heart over and over again. The holiday season will be filled with trips to the store, I just hope that we will be able to get beyond these feelings.

On a good note, Christopher our oldest son just took his entrance exam for school, we thought he should wait until after the holiday’s because it would be such an emotional time to try and study and deal with our family’s loss. He will start January 5th and be going for drafting. Take care and keep praying for all the children still battling this horrible disease.Brian

Thursday, November 13, 2003 11:25 AM CST

Sorry it’s been so long since our last update, time just seems to have a different way of moving now. Patty is doing as well as she can dealing with these chemo treatments. We are on the down side now, only three more treatments until this hell comes to an end. Then we face the unknown again, no treatments and waiting to see if what she had gone through worked and got all the cancer. Cancer has been such a big part of our lives for so long, and believe me it has sucked for just as long. I hope and pray that this is all that our family will have to endure for the rest of our lives. We have gone through so much and given up far too much to ever have to deal with anything like this again. We have been told by so many that this will make us stronger, but it has actually ripped me apart at my core and made me much more unsure and totally confused. I don’t think I will ever be able to deal with anything like this again.Going into the holidays is definitely starting to affect us, we had Halloween a couple of weeks ago and thought it wouldn’t be that bad, but after hearing all the kids outside running and shouting it just crushed me. My baby should have been out there running with all of her friends and just being a kid. I can’t explain the feeling you get when you go to the store and see a little girl about the same age as Brittany just walking around with her friends, it just breaks my heart over and over again. The holiday season will be filled with trips to the store, I just hope that we will be able to get beyond these feelings.On a good note, Christopher our oldest son just took his entrance exam for Tech school were he will study drafting. He will start January 5th, we thought he should wait to start school until after the holidays, since it would be such an emotional time to try and study and deal with our family’s loss. Take care and keep praying for all the children still battling this horrible disease.Brian

Thursday, November 13, 2003 10:25 AM CST

Friday, October 31, 2003 7:33 PM CST

Dear Friends,
As you can imagine the last few weeks have been very difficult. We are coming out of a fog it seems and truly facing day-to-day life without our precious daughter. I know we are not the first nor will we be the last to lose our child, but we had such a long intense fight and she was our entire focus 24/7. We lived and breathed to save her life, while watching her endured such horrible pain and physical deformity. It was such a nightmare to look in her face as she searched our eyes for hope. Hope we always tried to give her; we sent her records and took her everywhere that might offer new treatment. She had every treatment possible and she knew there wasn’t anything we would not have done to save her, some times at three in the morning that may be all you have to comfort you.

The next few weeks will be especially hard as my treatment is starting to really catch up with me. I not only feel sick I am looking sick. I hate so much that Brian and the boys have to look at yet another bald head and see so many of the same things they watched Brittany go through, it just really is more than we can bear at times. Unfortunately, along with enduring everyday without Brittany, we have no choice. So we try everyday to show each other love and compassion. I know we have been out of touch with many of you who have called or written, and I’m sorry for that. Please do nottake it personally. We are just mentally exhausted and physically drained. Some days are better than others but most days we feel so lost without her and tired. It almost feels like we are catching up on two years of sleep and care we never got.

I know from passed entries it may seem as though we have lost faith, but we have not. At times it is hard not to be angry. I think Brian is very angry and will be for a while. He will have to make peace with God in his own time. I think Brittany will help him with that. She was very spiritual and truly believed God loved her and would take care of her.

With the holidays and Brittany’s Birthday on November 25th, we have many difficult days ahead. We visit the cemetery often and hope her permanent nameplate will be in by her birthday. The boys are doing pretty good, they miss their sister very much, it helps them to spend time in her room with her things or talk about her with us or someone who knew her. They are such sweet and gentle young men, not a day goes by since they were born that they don’t kiss, hug or say they love us. We are truly blessed to have them and have never lost sight of that. As always thank you so much for checking on us, your encouraging and heartfelt guest book entries are much appreciated. Please remember to keep all who suffer from this disease or suffer in general in your prayers. Take care; hope all is well with you and your families.

Love,
Patty

PS- Many have asked were we thought best to donate in Brittany's name. Below are some suggestions. I also put this info above in the intro were it will remain for future reference.

Keep Brittany’s Dream Alive

As you know, Brittany was determined to raise awareness of Childhood Cancer. Her dream was to one day really make a difference in the funding given and respect for the disease. I bet you didn’t know more children in our country die each year from cancer than Asthma, AIDS, Diabetes and Cystic Fibrosis combined. Doesn’t that just amaze and appall you? I know it floored us. Thank God we have made such tremendous strides in treating Leukemia, the most common form of Childhood Cancer, but there is much to do. How little is know is scary especially in treating less common cancers like the one Brittany had.

It seems all to easy to turn away if you are fortunate and you child is not stricken with cancer, it's unbearable to watch or even think about. But you wonderful brave people have done just that, you have seen the horror and didn’t turn away, instead you embraced us and we so thank you. Your love,prayers and encouragement, mean more than we could ever express.

After seeing what Brittany and so many other precious children go through we have been asked many times were we would like to see donation go in memory of Brittany. I have listed below a few suggestions that are very worthy of your donations. They are all local non-profit organizations. I know our family will continue to support them on a regular basis. We thank you on their behalf in advance for anything you can do to help, either now or in the future.

The Children’s Cancer Center - www.childrenscancercenter.org
Check out this website, your can purchase holiday cards and calendars. This center was and continues to be our lifeline. Some of their many services are peer support for parents, big buddies for siblings of patients, Teen Group for patients, and bereavement groups. We are so fortunate to have this center; no other area we are aware of has one of its kind. The staff is incredable, they go above and beyond to help. So please consider supporting this center it is truly an asset to our community.
Address: 4901 West Cypress Street
Tampa, Florida 33607
Tel: (813) 367-5437

The Sarcoma Program at Moffitt Cancer Center – One of Brittany’s most trusted doctors runs the Sarcoma Program at Moffitt. He is a dedicated Physician and an all around wonderful person. He goes above and beyond for his patients, especially the kids he sees at All Childrens Hospital since Moffittt no longer sees children. He and Brittany’s Neurosurgeon Dr.Vrionis willingness to perform difficult surgeries in the late stages of her disease gave us several months of time with Brittany. They treated her as an individual and respected that she wanted to still fight. For that we are forever grateful. Dr. Letson is determine to find better treatments for her disease (Osteosarcoma) and is responsible for many new studies. You can donate by mailing a check below, be sure to mention in memory of Brittany.

Moffitt Cancer Center
Attention: Sarcoma Program
12902 Magnolia Drive
Tampa, Florida 33612

You can donate on line also @ https://www.moffitt.usf.edu/foundation/gifts.htm. After you put in your info, please choice research than in the box that says, “Other please indicate”, type in Sarcoma program.

The Children’s Dream Fund- http://www.childrensdreamfund.org
They are responsible for Brittany meeting President Bush, Joanne our dream coordinator worked close to a year trying make this to happen. It was truly Brittany’s dream come true, a private meeting and extensive White House tour with many correspondents and calls from the President and Mrs. Bush since that meeting. The job they do for these kids is exceptional.

The Jerry Wunsch Foundation - The former Buccaneer now playing for the Seattle Seahawks and several other NFL players send and join several children with cancer on a journey to Wisconsin in February for an opportunity to see and play in the snow. This was the first and only time Brittany saw snow and she loved it. She went skiing, tobogganing, rode a snowmobile and went to Lambo Field. What a great group of people to give of their time to be with these kids, the precious memories made on these trips are priceless. The foundations office is located at The Children’s Cancer Center @
4901 West Cypress Street
Tampa, Florida 33607
Tel: (813) 367-5437

Camp Good Days and Special Times- Provides among other services camps and outing for children and adults with cancer and other life threatening illnesses. A great group of people that add quality time to a difficult situation.
http://www.campgooddays.org/

Thursday, October 16, 2003 11:03 AM CDT

Wednesday, October 1, 2003 8:41 PM CDT

Well another round of chemo under our belts for Patty, that’s number three with nine more to go, then she will go in for another surgery. We spent over eight hours sitting at the hospital waiting for a 2 ½ hour chemo, they really need to reevaluate how they do things up there. Other than the wait it went pretty smoothly, Patty is able to sleep through the infusion, which helps the time in the chair pass a little more quickly.

A couple of weeks ago a D.J. at a local radio station had a golf tournament with the proceeds going to the Children’s Cancer Center. He had met Brittany last year and when he found out that she was taken from us he dedicated the tournament to her with the proceeds going to the teen group, which Brittany participated in at the Children’s Cancer Center. This was the fifth year that he has picked the CCC as the benefactor of the tournament; individuals like this truly deserve a place in heaven for reaching out to these kids. At the end of the tournament, during the awards ceremony they presented him with a plaque that had a picture of him with Brittany that was taken last year, he broke down and had to leave the building. I am so proud of the things the Brittany had accomplished in her short life, she was so young but able to touch so many.

We are getting ready for some very rough days and weeks ahead, we will be experiencing a lot of firsts without Brittany. Our anniversary is today, our son’s birthday is in four days and Brittany’s birthday is coming up along with all the holidays. I am reasonably sure that these will be the most difficult days that we have experienced as of yet. It’s been a month since Brittany was taken, and it still hurts like it was yesterday. I pray that it will get better as time goes on, but I fear that it will always hurt like a day old wound.

Please continue to pray for all the children still battling this horrible disease, and pray for a cure, this cannot continue to happen to these children.

Brian

Wednesday, September 24, 2003 9:28 AM CDT

Monday was the second round of a twelve round regiment for Patty’s chemo. The first round went all right, some nausea and bone pain but that seemed to be controlled fairly well. There will be a cumulative effect with all this chemo because she will never get a chance to recoup from the last round before she gets hit again. It’s extremely hard to have to watch her go through this with all that has happened in the last few weeks. She is having such a hard time trying to stay positive; she feels that she should not make it thru this if Brittany wasn’t able to. She knows that is wrong to think that way, but sometimes it’s impossible to think any other way. Patty knows that Brittany would want her to fight with every thing she has and most times she is able to, but these feelings are so overwhelming that sometimes you just give in if only for a little while.

We basically just exist right now, there’s too much pain to really enjoy anything that life has to offer. It’s only gotten harder in the last couple of weeks, each new day brings new painful memories, and with these memories the reality that we will never see our precious daughter again. This seems like some cruel joke someone is playing on us, and we are waiting for them to tell us Brittany is hiding in her bedroom or somewhere. I really don’t know how you can ever get over the loss of your child, the wound is to deep, actually it’s like a seed that was implanted when Brittany died, it just continues to grow and grow and get more and more painful with each passing day as it grows.

We try to be thankful for what we still have, two wonderful boys who have also been through hell and back. They have given up so much of their lives while their sister was sick, and never complained once about doing it. The void left is their lives are enormous, they were all so close, and we were all such a close-knit family. We lived like the Cleavers on Leave it to Beaver, we did everything as a family, we went everywhere together, and we always ate our meals together. We were all so involved in each other’s lives that it makes this loss so much more difficult to deal with for everyone.

I continue to check up on a lot of the caringbridge kids, but I find it extremely difficult to sign any of the guest books right now, I’m way to emotional to have to put into words what I feel for this HEROES that I’ve come to admire. Please know that all of our prayers are with all of you and your families through this horrific ordeal. And I want to thank everyone who has continued to sigh Brittany’s guest book, we really appreciate all your concern and all of your prayers for our family and for Patty as she continues her fight against this most horrible of diseases.

Brian

Thursday, September 11, 2003 9:19 PM CDT

Updated summary above

Dear Friends,

We want to thank all of you who have traveled this very difficult journey with us. So many of you attended Brittany’s wake and funeral or sent cards, we are so touched by how many people truly care. My hope is the courage and strength Brittany demonstrated will somehow inspire you during a challenge in your life. I have drawn my strength from Brittany for quite a while. She loved life and fought so hard for everyday of the last couple of years, I feel it would be an insult to have life and not live to the fullest. So we are trying to pull ourselves together, but let me tell you, it is pure hell. We are taking things day to day, sometimes minute to minute.

We thank God for our wonderful sons who have been through so much also. They have matured into exceptional young men,we are very proud of how they have conducted themselves through this nightmare. Brittany could always count on them for a hug, a board game or just some quite time watching TV together. They were continuously by her side, putting there own lives on hold to help us provide the intense care and support Brittany required 24/7.

Brian will be changing the pictures and writing again, so keep checking the page. Several people have asked me to share the letter I wrote Brittany and read at her wake, so here it is. Take care and God Bless.

Love,
Patty

To My Precious Daughter Brittany,

I could never express what it has meant to be your mother. We've had, along with loving words an unspoken form of communication I believe will continue.

I feel you have always known your time on earth with us would be short. To make the most of your time you chose to embrace life and live with intense passion.

At times as I watched you suffer day after day, I would ask God "why have you given me this beautiful child, only to see her tortured". With each passing ordeal you went through, it became clear to me, that to you, one more day of life was worth the pain, it was indeed your will.

I know you have taught many lessons and touched many lives. I'm thankful your life had purpose, but as your heartbroken mother, I ache for a beautiful full life with you and will forever long for your touch, your words and your smile.

Brittany, thank you so much for your last beautiful smile as you saw heaven. That smile has given me such peace.

Until we meet again my baby, everywhere I am, there you'll be.
Your loving mother.

Tuesday, September 9, 2003 11:51 AM CDT

The hardest thing a parent will ever have to do is bury a child, or so I thought. It seems to pale in comparison to what comes after that. Every day is torture, every minute is pure hell. We long to touch her again; we would give anything to here her voice one more time. Every time we pass her room, we look in hoping to see her there, hoping for all this to be a nightmare that has to end. Unfortunately it’s not, it’s the life that we will live from now on and have to somehow find a way to deal with all this. I can’t tell you how hard it is to go to bed every night with a broken heart, and then to wake up the next morning with that same broken heart.

Brittany was such a special child to us; she was the inspiration that enabled us to be the family that we were. She was the glue that kept everything in place. I know that she is still with us in spirit, but that is not enough sometimes. I find myself remembering all the pain that she endured over the last two years, and have a hard time going any farther back than that. I feel robbed of all the good memories, I just hope that in time the horrible memories will dissipate and the good ones will emerge, because there were so many good times that we spent as a family.

The days are a little easier because we are able to keep busy, but some thing always pops up to slam reality back in quickly. Yesterday when I got the mail in I was going through it and there was a magazine for Brittany. My heart just about stopped beating, I was so choked up that I almost lost it over a stupid magazine. We have gone to the cemetery since we laid Brittany to rest, that wasn’t to hard because we feel she is not there but with us wherever we are. I have to stop here.

Brian

Saturday, September 6, 2003 10:10 PM CDT

Below is a copy of Brittany’s eulogy

Courage, Bravery, tenacity, strength, endurance, these are not just words that can be thrown around lightly, these are words that have to be earned, they have to be applied with ever so much respect. These are the words that come to mind when you think about Brittany. Indeed these are words that would be used to describe her by most that she met.
There are many other people out there that have earned this type of respect, but most were not an eleven year old little girl, a little girl who never asked to be put in a situation where these words should ever apply.

We have been so lucky; we were the ones GOD choose to be Brittany’s mommy and daddy, a task that took us through every emotion you could ever imagine. Brittany was the type of child that made you so very proud of her, no matter what was asked of her she was willing to do it, didn’t matter what it was. Many times she was asked to undergo extremely difficult medical procedures, procedures that scared us to death, but she would just focus on what was asked of her and attack. There were many times that she was asked to undergo back to back surgeries, and after recovering from them she was asked to do it again. Never, I repeat never was there ever a time that she complained or gave us a hard time about our decisions. Her zest for life was so strong that she gladly endured all these painful surgeries, chemo treatments and even the amputation. She was so willing to give up what ever she had to in order to beat this monster and just live her life.

Brittany would have been so happy to see all her friends and family here today. She was such a social person; she enjoyed the simple pleasures of just visiting with who ever happened to be around her at the time. She was the type of person that no matter how bad she felt a smile would creep across her face and brighten the room and that was usually infectious. To stand here now and try to convey the emotions that she drew from people she met would not be and easy task, anyone who met her became a better person. She possessed the innocence of a child and the wisdom and an adult, this she demonstrated over and over again.

Brittany was diagnosed with cancer at such a young age, and as horrible as that was she remained positive. She was not about to let this disease rob her of her dignity, since it had already robbed her of so much. Every new challenge that she was presented with, she took on with the tenacity of a tiger. She faced new challenges on almost a daily basis but again she was up to the challenge and would find away to over come and somehow benefit from it. Her many friends that she met on her journey battling this disease became a source of strength that she was able to draw from and they as well were able to draw from her.

Brittany would speak her mind given the opportunity, she had a way a letting everyone know exactly how she felt. Usually her friends would depend on her to champion their cause, and this was when Brittany was at her finest. Nobody messed with Brittany’s friends, or family. She had a passion that burned so brightly when it came to people she loved, God help the fool that messed with a loved one. During her short little life, she developed an excitement when it came to young children. She always wanted to be around the babies, she was in heaven when she was able to watch someone’s little one. She always told us when she grew up she was going to adopt all the babies that no one wanted. I truly believe that she would have done just that if she were given the chance.

There is just so much that I want to say about our little baby, but unfortunately time does not allow for this. Those of you who knew Brittany will remember all these wonderful traits and maybe some not to wonderful ones also. She it was a total package, more complete than most. We ask you all to cry with us and mourn the loss of our beautiful baby, but we also want you to rejoice with us because she has moved on and is in a place where no cancer, no pain, no hospitals and no doctors can touch her any more. For this we are thankful, though our pain will be everlasting.

Tuesday, September 2, 2003 5:52 PM CDT

President Bush called to to tell us how saddened he was by the news of Brittany's passing. He told us that his life was changed by meeting her and will never forget their meeting.

Update - Funeral arrangements for Brittany are as follows:

Wake/Visitation - 2pm to 4pm than again at 7pm to 10pm on both Thursday and Friday, at Gonzales Funeral Home on Dale Mabry Hwy.

Funeral - Saturday 10:30am @ St. Timothy's church off VanDyke Road burial to follow at Sunset Memorial Gardens.

So many times I’ve sat at this computer and had to write about the horrible things that my daughter has had to endure. But none of these times compare to what I’m feeling today. At 1:15 this morning our precious Brittany left us to become an angle. I have never felt such heart break, such desperation, and such emotional turmoil. My feeling of anger is so overwhelming that it’s smothering me. We have been approaching this conclusion for so long and yet we were completely unprepared when it arrived.

We were able to sit with Brittany and hold her for as long as we wanted, it felt so good to be able to be this close to her, it’s been such a long long time since we been able to do that. She left us with a smile on her face, so we know that she was no longer in any pain and at peace. I know she was so happy not to have passed in the hospital she hated so much, she was here where she belonged and her spirit will be able to watch over our family. We have no information on when she will be laid to rest but will post soon.

Brian

Tuesday, September 2, 2003 5:39 AM CDT

So many times I’ve sat at this computer and had to write about the horrible things that my daughter has had to endure. But none of these times compare to what I’m feeling today. At 1:15 this morning our precious Brittany left us to become an angle. I have never felt such heart break, such desperation, and such emotional turmoil. My felling of anger is so overwhelming that it’s smothering me. We have been approaching this conclusion for so long and yet we were completely unprepared when it arrived.

We were able to sit with Brittany and hold her for as long as we wanted, it felt so good to be able to be this close to her, it’s been such a long long time since we been able to do that. She left us with a smile on her face, so we know that she was no longer in any pain and at peace. I know she was so happy not to have passed in the hospital which she hated so much, she was here where she belonged and her spirit will be able to watch over our family. We have no information on when she will be laid to rest but will post soon.

Brian

Sunday, August 31, 2003 6:22 PM CDT

The days and the nights seem like a blurr, it’s hard to remember having a good nights sleep during the past couple of weeks. We are so afraid to sleep; every time Brittany stirs we get up and try to make her as comfortable as possible. Once again we were told that she would not make it thru the night, but once again she has rebounded and is still here fighting and trying so hard to remain here with us. It seems so brutal to have to sit here and watch her struggle for every breath that she takes.

Every once in awhile she will open her eyes and try to say something, but it’s usually so garbled we can’t understand her. We try to figure out what she wants, she then get so frustrated and just closes her eyes and goes back to sleep. I fight back tears when I talk to her because I know that she can hear me and I don’t want her to be afraid. I’m terrified and I just can’t imagine her feeling the same way that I do. I only hope that she is content and able to hear only positive things from all the visitors that we have had. She was so excited when she heard we were having some friends over Saturday evening, but then she woke up from a nap and was unable to catch her breath. Since that time she has declined significantly and appears to be nearing the end. Again I have never felt as horrified as I do right now. We are doing what ever we can to keep her free of pain and it appears that we have that under control, but her breathing is what we cannot do anything about.

When all of this started back in June of 2001 we were devastated when she was diagnosed with cancer. As horrific as that was there was still hope, now hope seems to no longer be a word that has any meaning to us. We prayed that Brittany would once again be whole and able to run and play and just be a normal little girl with all the problems only little girls have to deal with. But that wasn’t to be and we accepted that, but that wasn’t enough either, and now it seems that we will have to make the ultimate sacrifice and lose our baby to a disease that has robbed so many of so much. All the old clichés come to mind, I would trade with her in a minute and so on and so forth, but the truth is I don’t want to trade at all I want to just to have things back the way they were, I want my little girl back, the little girl that this disease took from us way back on June 2001. It has been so long since I have been able to just pick my little girl up and hold her and tell her I love her. This disease has given her so much pain it’s impossible to hold her, some days we can’t even touch her because she just screams from the pain. I need to know how we ended up here, why it has been such a struggle for this little girl to just live, why she has had to sacrifice so much, how this can be expected from such a innocent child.

Brian

Saturday, August 30, 2003 5:23 PM CDT

Sorry it’s taken so long for an update, but things have been pretty hectic around here. Brittany came home on hospice (hardest decision we have had to make so for) and for the most part has been feeling bad. She has had a hard time with pain; we have had to have her pain medication bumped up a couple times a day. She is now at a level that is more than twice what she was in the hospital. She still has a very difficult time getting comfortable. I just sit there and hold her hand telling her everything is going to be alright, hoping she is believing me, but knowing that she doesn’t.

Every night we end up staying up till 1 or 2 in the morning and then getting up with her all night to keep giving her the meds that she needs to try and get comfortable. Then she is up about 6 and that’s the end of our night. We are so afraid to have to go anywhere because she is so unstable and we need to be here with her. I know that she is in terrible pain, but I am still not ready to let her go yet, she’s my baby, my little girl, she belongs here with us. I know it’s selfish but no one can tell me there’s a better place for her to be than with her family that loves her and needs her.

We still are holding out for the miracle, but time is running short. Our hearts ache beyond belief, I feel like the hurt has been there so long that I will never feel normal again.

Brian

Monday, August 25, 2003 9:59 PM CDT

Just a quick update to let everyone know what’s going on and how the Zipter girls are doing. We were supposed to leave the hospital sometime this afternoon, I even talked with the nurse and she said we would be home by early evening. Well about 3:30 I was called out of Brittany’s room and told that it wasn’t going to happen today, once again we were given wrong information. I was more than a little angry, in fact no one wanted to come in and tell us this latest development. It seems that we now have to be trained on all the pumps that Brittany will be hooked up to and there has to be a nurse that stays the first twelve hours with us to make sure that we know what we are doing. I guess the last two years don’t count as experience with using pumps.

Well after some very tense moments we were able to get another tentative time that this would all take place. Tomorrow with any luck we will be able to bring our daughter home where she belongs. Only time will tell if this is going to happen, we can’t leave until late in the day because of the way meds are set up, so if there is any problem we won’t be able to get it resolved until the next day .

It’s so hard to have to sit in the hospital room day after day and try to keep your sprits up when you know that you have no control over what’s happening to your baby. Being left to the mercy of all these health care providers just plain sucks. One day I hope they wake up and realize that their playing with peoples lives and they just don’t have the right to do that. They all act like they care about you and your family, but actions speak louder than words.

Now on to the other Zipter girl, Patty is doing a little better. She has stopped taking her pain medication because it has been making her so nauseous. She said she would rather be in pain than throwing up, I don’t know if I agree with her but I have to support her. She has been over doing it as usual, even Brittany has been yelling at her to stop and lay down. She feel’s so guilty to be putting all of us through this on top of everything else. I keep telling her she’s not to blame and to let me take care of her. I guess being Italian has made her stubborn and she just doesn’t want to hear it, and I wonder where Brittany gets it from. This was supposed to be a quick update so I’ll stop here.

Brian

Friday, August 22, 2003 9:32 PM CDT

I’ve got great news to report, Patty’s surgery went better than we expected. They were able to put her port in with no problems, and then they did a lumpectomy and were able to get clear margins. They also did the mapping to see if the cancer had spread but after removing two hot limp nodes they showed no cancer for the preliminary report. This was the best case scenario that was possible, of course we still have to wait about ten days for the final report but it will be an easier wait knowing that everything should be alright.

What a day it’s been, I feel like I’ve been in a fight and had the crap knocked out of me. Poor Patty, she looks like she’s in a lot of pain and it hurts her to move her arm. She woke up after surgery and the first thing she wanted to know was how Brittany was. I hope that she gets a good nights sleep and takes it easy thru the weekend, I tried to get the doctor to tell her to take it easy, but she said Patty could do what ever she feels like, but would prefer that she stay in bed. You can’t say that to a mom who has a sick child because you know what she is going to do.

The next step in this horrible ordeal is to wait for healing to be complete and then start chemo. We are still not sure of the type but we have a couple of weeks to sit back and catch our breaths before we need to worry about that. After the last two weeks that we have had I think my girls need a break.

We are trying to bring Brittany home on Monday; at least that’s the plan. We are trying to arrange for the same type of medication to be given at home that we are using in the hospital, but last time we tried this we spent six extra days in the hospital and still had to change her meds. For some reason no health care company will give the two types of meds together, but this is the mix that they have found to work the best for her, so we need to stay with them.

Wish us luck
Brian

Thursday, August 21, 2003 7:53 PM CDT

Well it happened again, THANK GOD. Brittany has pulled through another desperate situation and surprised all the doctors and nurses here at the hospital. When we got her here, she went from bad to worse in a matter of hours. The situation was so bad they told us to be prepared for the end because it was very close. After a whole battery of tests they found that Brittany has a staph infection in her ports, a bladder infection from the catheter and e-coli. She was so bad that she actually stopped breathing right in front of the doctor, that’s when we were told to be ready. The next morning she was a little better and by the afternoon she was talking and eating. We were told that a lot of people rally before the end, but by the next day it was clear to all that Brittany was not ready to give up yet.

As she lay in her bed I would just watch her waiting for the end, but deep down I somehow knew that this was not going to be where we lost her. If you could see her now, she is getting stronger everyday and going longer and longer without having to be on oxygen. It still is a very bad situation, but now we have time to continue to treat her and hope for the miracle the she so deserves.

I want to thank all of our friends and family who have stood behind us and given us the moral support and strength that we have needed to get through this very trying ordeal. Again the caringbridge family was also here to give us encouragement and help restore our faltering faith. So many of you out there have made such an impact that I will be forever grateful.

Tomorrow is the day that we decided to have Patty go in for her surgery. With Brittany being more stable we feel that we need to get this going with Patty. She is still very reluctant to do this, but agrees that the timing is probably as good as it will get for a while. I feel like I’m being pulled in a hundred different directions all at once, having to make these decisions and then be able to get where I need to be with who I need to be there with is mind boggling. I just pray that we are making all the right decisions with both Brittany and Patty; again we have very little room for error.

I’ll update more tomorrow after Patty’s surgery, and hopefully it will be good news or at least as good as it can be under the circumstances.

Brian

Tuesday, August 19, 2003 11:45 AM CDT

So much has happened the last two days; I don’t know where to start. Patty and Brittany both went to the hospital at the same time yesterday, but unfortunately they were two different hospitals. Brittany was admitted because she started to bleed through her catheter and we had been in contact with the docs all through the weekend telling them this, but they kept telling us it was normal. We told them it was a lot of blood, but they said it was because the catheter was in so long and was irritating the lining of the bladder. The nurse came out for her morning assessment (what a joke that has been) and saw the amount of blood and called the doctor. Now because a nurse said it was a lot of blood it made all the difference in the world, I guess we are not capable of accurately assessing her condition and relaying this information.

Brittany’s condition has declined over the past week, she has a very hard time breathing, and her pain has increased. They don’t feel she has a lot of time left. You can’t imagine how hard it is to hear those words over and over again, every time they tell us this it feels like we are in a dream and we can’t wake up. She has improved a little through the night, but it still may not be enough to take her home.

I have said this in the past, but it needs to be repeated, I feel so lucky to have been chosen to be Brittany’s father. It could have been anyone but it was me. I have been privileged, though it may only have been for this short time. We have lived a lifetime of love and joy as well as pain and sorrow in these eleven short years. She has touched so many and had an impact that time will not erase. My only hope is that these last few days are comfortable and filled with thoughts of a better place, a place where there is no pain, no suffering, and most of all no CANCER.

As far as Patty’s surgery goes it has been rescheduled for this Friday, I really don’t think this will happen with all that is going on with Brittany right now. I can’t believe we are going to start this all over again. Please pray for Brittany to be comfortable and at peace while she continues her fight, a fight that she has not given up on, a fight that has robbed her of so much, a fight that has robbed us all of so much, and will continue to have it’s effects felt for the rest of our lives.

Brian

P.S. numerous people have asked us for our address so here it is.
The Zipter Family
15724 Gardenside Ln.
Tampa Fl. 33624

Sunday, August 17, 2003 8:33 PM CDT

Tomorrow Patty will go in for her port placement surgery and some type of mapping to see how far the cancer has spread. We have been trying to get Brittany admitted to the same hospital as Patty so we will all be able to be together. This has proven once again to be a bit of a challenge because the hospital Patty is having her surgery at is an adult cancer center and they do not see children under 16 years old. We have a few connections there so hopefully it will all work out.

Brittany has been up and down, one minute she can’t be roused and then an hour latter she is up and talking and eating. This has been one hell of a roller coaster and it doesn’t seem to be slowing down at all. I hope we can fit all the little pieces together and keep our sanity while we try to work out all of this.

The next week or two will be very difficult for all of us as we try to figure out if this is a new cancer or actually the old cancer coming back. The best case scenario is a new cancer because it will give us more options as far as how to treat it. It’s just doesn’t seem right that we have to undertake all this when our plate is so full already.

I want to thank everyone who has come by to offer their support and encouragement this past few days, it really means a lot to us and has helped us keep our minds off what lay ahead. I also want to thank all who have signed Brittany’s guest book; the caringbridge family means so much to us and has helped us through so many difficult times.

I’ll try to update as to how my girls are doing tomorrow or the next day. Please keep praying for Brittany and Patty and all of the children and adults that deal with this disease. Take care.

Brian

Thursday, August 14, 2003 4:24 PM CDT

Open house: Brittany had a really rough night last night, her breathing is labored but she is holding her own today. Since she came home from the hospital yesterday she has been wanting to see her family and friends. So, accept this invitation to come by and visit if you would like.

Sometimes I sit up at night by myself and think how horrible by life has turned out. I can’t believe that my daughter has cancer, and I am even more dumbfounded by the fact that it seems like we can’t beat this nasty beast. I know that I’m being selfish when I think this way, but it hurts so much sometimes I can’t help it. Then other times I sit up and thank God for everything I have, and for my beautiful, loving, giving, and all around wonderful daughter. I thank god for my beautiful wife and for my boys. I think that we have endured the worst and for the most part have come through a stronger and closer family than we were before.

I think about all the times that we thought we were losing Brittany and all the times she has bounced back. I just can’t imagine life without her. Now I have to face and equally devastating reality, my wife Patty has relapsed, had a reoccurrence or what ever they call it. Her cancer is back. I live every day with the knowledge that I may lose my baby, now I have to somehow exist knowing that I may lose my precious wife, my soul mate, my rock. I don’t know how we are going to pull ourselves through this, I draw so much from Patty, she keeps me balanced, she is the reason I’m who I am. This could not have come at a worse time, not that there is ever a good time, but hey give me a break already.

Patty is going to put off surgery until we can figure out what we are doing with Brittany, but she will have to start chemo very soon. She will go in and have her port put back in on Monday and have some more testing done next week. I had to set the appointment for her to do all this because she wasn’t even going to tell me that she suspected it had come back. She was going to wait and see what happens with Brittany before she said anything. I can’t blame her for that, because if the situation was reversed, I don’t think that I would have said anything either.

I can’t tell you how much we appreciate all your support and prayers. We draw so much from the encouragement that we receive through this amazing vehicle that caringbridge has afforded us. I am in awe at the amount of people that truly care about my family. Please continue to pray for that miracle, I think we need it now more than ever.

Brian

Tuesday, August 12, 2003 9:16 PM CDT

Well here it is Tuesday night and we’re still sitting in this hospital. We have run into a brick wall with home health care, for some reason we can’t find a company that is willing to administer the types of narcotics that Brittany has been on in the hospital. Until we find a company that is willing we are stuck here. It’s unbelievable, we finally find meds that work and make her comfortable, and we can’t find anyone familiar enough with them to allow us to go home.

Well we got some good news yesterday; the insurance company has approved the wheelchair. Now we have to wait for about three weeks for them to build it, but they should have a loaner out to us in a few days. Of course it won’t do us any good if were still in the hospital.

Brittany still has had some difficulty sleeping through the night; we believe it’s due to the narcotics. The docs have tried sleeping pills, but after the first night they stop working. She doesn’t appear to be in pain, just uncomfortable with positions, so we move her several times through the night trying to find just the right position. I guess our next battle will be trying to get a bed for her at home. We have to try and find some type of airbed that we can adjust because her pain is centered in her spine. A normal bed is very difficult as far as trying to get her settled in.

I guess that’s all for now.

Brian

Saturday, August 9, 2003 11:57 AM CDT

Brittany has been in the hospital for a few days now. She has lost the ability to walk or to even feel her legs. She has been in a tremendous amount of pain and we have been working with the doctors to get this under control. Her spirits remain good and her sense of humor is still there. She seems to be more comfortable, and our hope is to have her home again on Monday.

We have been working on getting her a motorized wheelchair that she can work with one hand, but this has been a battle with the insurance company. They keep talking about her prognosis; I don’t see how this should come into play at all. If there is something that they can do to make her more comfortable and able to be a little independent, they should. This is going to be one battle that they are going to have a hard time winning.

When we got back from our vacation, we took Brittany into the hospital because of all the problems that developed in the last week while we were gone. We found out that both of her lungs had collapsed again. They were about 50% collapsed, and the docs felt that they would never get any better. Well yesterday we found out that they had re-inflated all by themselves. The doctors are mystified; they just don’t understand how this is possible. Brittany once again proves that they can be wrong and they don’t know everything.

We still have been backed into a corner as far as what we are going to do next. We are planning to start a new chemo on Monday and again hope for the best. We have been told that this is a long shot, but it’s better than sitting around waiting for the inevitable to happen. I look into her eyes everyday and see that she has not given up and I know that we can not give up; we must keep trying to beat this ugly disease. My baby has struggled to long and to hard, and sacrificed too much to give up now.

Please keep praying for her miracle to happen.

Brian

Friday, August 1, 2003 7:08 PM CDT

Mini Update - August 1, 2003 :
Brittany was admitted to University Community Hospital Wednesday. Her pain became unbearable and we felt there were also several other issues that needed to be addressed immediately. She is doing better now, so we will be going home this evening. I’ll update soon.

Tuesday, July 29, 2003 10:54 PM CDT
We’re back! We left NY on Monday and arrived home Tuesday evening. The trip home was pretty good. We are very happy we were able to go to NY. We stayed at my brother and sister-in-laws house on Long Island. It was wonderful spending time with them, their kids, my cousins and my Aunt. We went into the city for the day; my nephew who lives there took us to the Empire State Building, Little Italy, ground zero and gave us a driving tour of the rest.

The night before we left for NY Brittany was started to feel a tingling in her legs, the last time she felt this within four days she could no longer walk and a tumor was discovered in her neck. Needless to say we were beside ourselves. Unfortunately our fears became reality, within three days she lost her ability to walk. Of course she was very depressed and extremely scared. We are of course not sure if this is a side effect of the radiation or another tumor. I called her Doctor and asked for a few days worth of steroids to decrease swelling in her neck if that was the cause of her paralysis. The last time this worked and she got back some movement, which was not the case this time. The fact that the steroids had no effect gives me some hope that maybe the paralysis is from the radiation. This will be hard to determine, since scans of her neck are almost unreadable due to the hardware.

Her doctor encouraged us to stay in NY and let this play out since there is little that can be done if it is from the radiation. Since at first her pain was even better than when we were in Va. Were agreed to stay. Unfortunately her pain has increased quite a bit the last couple of days. We will take her to the clinic tomorrow to schedule scans and chemo if her blood work is OK.

We are thankful for the time with each other this summer. I wish I could make time stand still and bring her back to the health she enjoyed just a couple of weeks ago. I pray there will be a solution to her paralysis or at least let it be the radiation, we knew the risk and gladly accept that consequence if it keeps the tumor from growing back. Please keep her in your prayers and as always thanks for your concern.

Love,
Patty

Tuesday, July 29, 2003 10:54 PM CDT

We’re back! We left NY on Monday and arrived home Tuesday evening. The trip home was pretty good. We are very happy we were able to go to NY. We stayed at my brother and sister-in-laws house on Long Island. It was wonderful spending time with them, their kids, my cousins and my Aunt. We went into the city for the day; my nephew who lives there took us to the Empire State Building, Little Italy, ground zero and gave us a driving tour of the rest.

The night before we left for NY Brittany was started to feel a tingling in her legs, the last time she felt this within four days she could no longer walk and a tumor was discovered in her neck. Needless to say we were beside ourselves. Unfortunately our fears became reality, within three days she lost her ability to walk. Of course she was very depressed and extremely scared. We are of course not sure if this is a side effect of the radiation or another tumor. I called her Doctor and asked for a few days worth of steroids to decrease swelling in her neck if that was the cause of her paralysis. The last time this worked and she got back some movement, which was not the case this time. The fact that the steroids had no effect gives me some hope that maybe the paralysis is from the radiation. This will be hard to determine, since scans of her neck are almost unreadable due to the hardware.

Her doctor encouraged us to stay in NY and let this play out since there is little that can be done if it is from the radiation. Since at first her pain was even better than when we were in Va. Were agreed to stay. Unfortunately her pain has increased quite a bit the last couple of days. We will take her to the clinic tomorrow to schedule scans and chemo if her blood work is OK.

We are thankful for the time with each other this summer. I wish I could make time stand still and bring her back to the health she enjoyed just a couple of weeks ago. I pray there will be a solution to her paralysis or at least let it be the radiation, we knew the risk and gladly accept that consequence if it keeps the tumor from growing back. Please keep her in your prayers and as always thanks for your concern.

Love,
Patty

Thursday, July 17, 2003 11:03 AM CDT

July 17, 2003 - Road trip Update:

Well we are spending our last day at the resort. It has been a great week! The boys and Brian have gone canoeing and kayaking on the Shenandoah River. We all played Putt-Putt golf and went to the Shenandoah National Park. Brittany went horseback riding; she has wanted to do that for so long, so we were glad she had the opportunity.

Just walking around the resort is an adventure, you see so many animals, and the air is crisp and the view spectacular. Last night a very large black bear digging through the dumpster behind our van woke us up. He was throwing garbage all over the place. The kids were freaking out. I kept envisioning the scene from the movie “ The Great Outdoors” with John Candy.

We head to NY in the morning. We are very anxious to see family on Long Island and go into the city for a couple of days. Thank God Brittany’s pain has been manageable, gone would be great, but we’ll take manageable. We did not anticipate that our condo would be on the highest peak, so we were a little worried about the effect of the pressure change on Brittany’s lungs, but she is breathing fine, in fact I think better. She looks great and we all feel somewhat recharged. We thank all of you for your well wishes on this trip and hope you are also enjoying the summer with those you love. Take care.

Love,
Patty

July 14, 2003 - Road trip update:

Just wanted to check in and say hi! We made it to Virginia on Friday. The resort is gorgeous; it is built on the side of a mountain in the Shenandoah Valley. Our condo is at one of the highest peaks. The view over the valley is breathtaking. I can’t believe we are actually here. We booked this trip before Brittany got sick. As the date was getting closer it seemed impossible, but here we are. We are so thankful.

The trip up was good. We stopped Thursday night at “South of the Border” in the South Carolina, what a tacky place, but it was fun. Christopher found his vacation hat (a tradition he started years ago), for some reason he is a Viking this trip (we’ll put pictures on the website). Stephen is going through cell phone withdrawal. I think he is going to make it though since he got to talk to some of his friends online.

Brittany did great driving in the van; she was awake and comfortable most of the trip. She is having such a good time with all this nature around her. We see about 10 to 15 deer a day, we’ve seen a few black bear cubs, a fox and several other critters. Unfortunately her back pain remains. It seems to come in waves. It’s hard to predict the exact cause, we suspect and hope it is the affects of the radiation and/or the fact that she is so much more active then she was just a month ago. By the end of the day she is really uncomfortable, but the liquid Morphine is helping. It is also very possible her pain may not be worse, but her body has grown tolerant of the dose of pain meds she has been on for so long and it will take a higher dose to control the same level of pain. Either way we are managing it the best we can, she rests when she needs to and runs when she can. Well take care, we’ll update again soon.

Love,
Patty

Tuesday, July 8, 2003 10:08 PM CDT

Hi,
We would like to thank the wonderful cast and crew of “18 Nervous Gumshoes” the event was an incredible success; they will hold a special place in our hearts. A special thanks to MaryAnn Bardi for all her help.

Hope everyone had a great 4th of July, we did. Brian bought plenty of fireworks to keep Brittany happy, I’m not sure if our neighbors shared her enthusiasm. The last couple of weeks have been very relaxing. I want to thank those who have made time to share this summer with us. Brittany has been having a great time, she spent the night at a friend’s house a couple of times and her cousins spent the night at our house. She’s been swimming and spending the cooler evenings in our yard with the pets (her cat is so happy she has been home with him). Unfortunately as her activity has increases, so has her back pain. So when she went for blood work Monday we asked if we could try liquid Morphine since it works fast and might save her stomach, so far so good.

When Brittany is having a bad bout with pain we feel like maybe we shouldn’t go to Virginia, but then she rebounds and we catch our breath. We feel pretty confident we can control her pain but it’s very scary to go so far from home, but what hasn’t been scary about the last two years. Well I’m going to get back to packing Brittany is picking her clothes to take, so this could take awhile. If all goes well and Brittany is feeling up to it, we plan to go to New York after Virginia. Brittany has never been there and we all would really love to visit with my brother, sister-in-law, nephews, niece and cousins. So keep your fingers crossed and keep the prayers coming, we leave on Thursday morning and plan to be back by the end of the month. We will update if possible, take care and live each day to the fullest.

Love,
Patty

Saturday, July 12, 2003 10:27 PM CDT

Road trip update:
Just wanted to check in and say hi! We made it to Virginia on Friday. The resort is gorgeous; it is built on the side of a mountain in the Shenandoah Valley. Our condo is at one of the highest peaks. The view over the valley is breathtaking. I can’t believe we are actually here. We booked this trip before Brittany got sick. As the date was getting closer it seemed impossible, but here we are. We are so thankful.

The trip up was good. We stopped Thursday night at “South of the Border” in the South Carolina, what a tacky place, but it was fun. Christopher found his vacation hat (a tradition he started years ago), for some reason he is a Viking this trip (we’ll put pictures on the website). Stephen is going through cell phone withdrawal. I think he is going to make it though since he got to talk to some of his friends online.

Brittany did great driving in the van; she was awake and comfortable most of the trip. She is having such a good time with all this nature around her. We see about 10 to 15 deer a day, we’ve seen a few black bear cubs, a fox and several other critters. Unfortunately her back pain remains. It seems to come in waves. It’s hard to predict the exact cause, we suspect and hope it is the affects of the radiation and/or the fact that she is so much more active then she was just a month ago. By the end of the day she is really uncomfortable, but the liquid Morphine is helping. It is also very possible her pain may not be worse, but her body has grown tolerant of the dose of pain meds she has been on for so long and it will take a higher dose to control the same level of pain. Either way we are managing it the best we can, she rests when she needs to and runs when she can. Well take care, we’ll update again soon.

Love,
Patty

Tuesday, July 8, 2003 10:08 PM CDT

Hi,
We would like to thank the wonderful cast and crew of “18 Nervous Gumshoes” the event was an incredible success; they will hold a special place in our hearts. A special thanks to MaryAnn Bardi for all her help.

Hope everyone had a great 4th of July, we did. Brian bought plenty of fireworks to keep Brittany happy, I’m not sure if our neighbors shared her enthusiasm. The last couple of weeks have been very relaxing. I want to thank those who have made time to share this summer with us. Brittany has been having a great time, she spent the night at a friend’s house a couple of times and her cousins spent the night at our house. She’s been swimming and spending the cooler evenings in our yard with the pets (her cat is so happy she has been home with him). Unfortunately as her activity has increases, so has her back pain. So when she went for blood work Monday we asked if we could try liquid Morphine since it works fast and might save her stomach, so far so good.

When Brittany is having a bad bout with pain we feel like maybe we shouldn’t go to Virginia, but then she rebounds and we catch our breath. We feel pretty confident we can control her pain but it’s very scary to go so far from home, but what hasn’t been scary about the last two years. Well I’m going to get back to packing Brittany is picking her clothes to take, so this could take awhile. If all goes well and Brittany is feeling up to it, we plan to go to New York after Virginia. Brittany has never been there and we all would really love to visit with my brother, sister-in-law, nephews, niece and cousins. So keep your fingers crossed and keep the prayers coming, we leave on Thursday morning and plan to be back by the end of the month. We will update if possible, take care and live each day to the fullest.

Love,
Patty

Tuesday, July 8, 2003 10:08 PM CDT

Hi,
We would like to thank the wonderful cast and crew of “18 Nervous Gumshoes” the event was an incredible success; they will hold a special place in our hearts. A special thanks to MaryAnn Bardi for all her help.

Hope everyone had a great 4th of July, we did. Brian bought plenty of fireworks to keep Brittany happy, I’m not sure if our neighbors shared her enthusiasm. The last couple of weeks have been very relaxing. I want to thank those who have made time to share this summer with us. Brittany has been having a great time, she spent the night at a friend’s house a couple of times and her cousins spent the night at our house. She’s been swimming and spending the cooler evenings in our yard with the pets (her cat is so happy she has been home with him). Unfortunately as her activity has increases, so has her back pain. So when she went for blood work Monday we asked if we could try liquid Morphine since it works fast and might save her stomach, so far so good.

When Brittany is having a bad bout with pain we feel like maybe we shouldn’t go to Virginia, but then she rebounds and we catch our breath. We feel pretty confident we can control her pain but it’s very scary to go so far from home, but what hasn’t been scary about the last two years. Well I’m going to get back to packing Brittany is picking her clothes to take, so this could take awhile. If all goes well and Brittany is feeling up to it, we plan to go to New York after Virginia. Brittany has never been there and we all would really love to visit with my brother, sister-in-law, nephews, niece and cousins. So keep your fingers crossed and keep the prayers coming, we leave on Thursday morning and plan to be back by the end of the month. We will update if possible, take care and live each day to the fullest.

Love,
Patty

Saturday, June 28, 2003 12:03 AM CDT

Hi everyone,
Sorry it has been so long without an update. We were in Orlando looking into some new treatment alternatives, and filling ourselves with some Disney magic. Brittany continues to get stronger everyday; she is eating better and walking more. We were very fortunate to be able to use our bonus days at the resort and gather valuable treatment information, but we were very disappointed we had to miss “18 Nervous Gumshoes” preformed by the Carrollwood Players. I here they we great! I know the tape they sent us of a previous show was wonderful. We are so thankful for there help, what a great bunch of individuals.

We hope to be around for a couple of weeks before we leave for our vacation in the mountains. We made these reservations over two years ago and have been looking forward to this trip since that time. We hope that Brittany is strong enough to be able to do some of the activities that go along with being in the mountains, but if not it’s still a chance to get away and relax. Brittany is in pretty good health considering what she has been through these last couple of months, and she continues to get better every day, she still has some bad days, but for the most part she is up and moving around.

It’s been hard seeing her this well and knowing that she will have to start chemo again when we are back from our vacation. I look at her and I just can’t imagine putting her through that again. It’s going to be the hardest round of chemo that she has been through so far and it will last for 21 days before she will get a break. I hope she will be strong enough to endure this one last time, god knows we don’t have a lot of other options after this. We will continue to search out alternative medicines to give along with this chemo.

Brian

Tuesday, June 17, 2003 12:12 AM CDT

Brittany has had a couple of great days, through the weekend she has steadily gotten stronger and really started to eat. She had to get blood on Monday because her counts are still dropping from the last round of chemo, but she looks 100etter than she has in months. After the blood she was supposed to be deaccessed and reaccessed, but she wanted to try going off the hyperal and see if she could eat enough to not have to go back on. We are giving her until Wednesday before we know if this is going to work. If she doesn’t eat enough she will have to be reaccessed and continue on the fluids.

Brittany is really starting to get stronger with her walking and moving around. She still needs the wheelchair if we are going out to the mall or someplace like that, but around the house and for short trips out she is strong enough to walk. She feels so much better when she is able to move around on her own, and really hates to have to be pushed around. Even the steps in the house are getting easier for her; we live in a tri-level so no matter where you want to go there seems to be steps involved. Sometimes it can be quite dangerous on these steps with all the cats and dogs running up and down in front of you.

We can’t complain with the summer we have had so far, it’s been relaxing and enjoyable to have everyone home and together, not like the usual boys in school and Brittany in the hospital. You don’t realize what you have until it’s been taken away from you, even though it might be something as small and insignificant as time it is missed deeply. We will cherish every moment we have together this summer and create memories that will last us a lifetime. It seems like in the end that’s all you’ll have after everything is said and done. Some are destined to create these memories with more emotion and passion and even sorrow than others, but you take what you can get and you live with them.

I sometimes wish that this was happening to someone else; actually I wish every day of my life that it was someone else, but truly no other child should have to endure this. There is some good that has come from all of this, I have been fortunate enough to watch my beautiful daughter mature into a wonderful young woman well ahead of her time. She has qualities that adults would be envious of and wish that they possessed, her compassion and tenderness is truly inspirational. She has also developed quite a stubborn streak, but this is what gets her through the long rounds of chemo and other treatment, so I guess this is something we can live with also.

Take care
Brian

For those interested in attending the play 18 Nervous Gumshoes tickets are still available for Sunday June 22nd at three o'clock. Contact Maryanne Bardi at 813-920-5795 This is the play that they are donating the proceeds to Brittany.

Friday, June 13, 2003 7:45 AM CDT

This week has gone by pretty fast. We have been taking it easy most of the time and trying to catch up a little on things we have put off that are driving us…I should say me crazy. Brian is getting our van ready for the trip to Virginia. We all went to the mall and walked around while the bald tires were replaced at Sears. Brittany was miserable unfortunately, but I think it still did her good to get out. She goes in for blood work again this morning; I anticipate her counts are stable at this point. Her nausea is still hanging on, although she is hungry at times. Yesterday afternoon she had a burst of energy and wanted to go to the grocery store with me to pick her yogurts and such. We ended up being out about two hours, she walked around the Dollar Tree Store and rode around the grocery store on the scooters they have for customers who have trouble walking. Between her and Christopher riding that scooter like maniacs and teasing each other through the store, they were glad to see us leave. Brittany did pick a few soft things up that hopefully we’ll actually see her eat, so far the yogurt is the only thing she gets down. She is trying though, sometimes she’ll have a taste for something and I’ll buy everything, cook it than either the smell gets to her, or the pain of swallowing is too much to bear. So we keep trying, even a spoonful here and there is better than nothing.

Well the weather has been great here as usual. It looks we will try to get to Orlando in a week or so. We love that area and we still have some free nights at a resort to use. Not much else is new, Take care.

Love,
Patty

Monday, June 9, 2003 4:29 PM CDT

Hope everyone enjoyed the weekend. The past week has been a long one for us, full of many decisions. Brittany is still feeling pretty lousy. She is starting to eat some, but not enough to get off the supplemental nourishment. She unfortunately will not be going to ROCK Camp with her friends. ROCK camp is run by The American Cancer Society for children with cancer. She went last year and had a blast.

Brittany’s course of treatment has changed yet again, the next course of treatment should begin in about six weeks or so. In the meantime we are going to enjoy the summer. We are looking forward to a trip in mid July to the Shenandoah Valley. We have had this planned for over a year, so I pray we get to go. Between now and July, we are going to try some day trips here and there, whatever Brittany is up to or wants to do. We hope all of you are doing the same and making the time to enjoy and be with those you love. I’ll touch base again soon.

Love,
Patty

Tuesday, June 3, 2003 12:35 AM CDT

The last few days have been up and down for Brittany, mostly up I would say. She has been able go out a bit which I think has done her a world of good. We went to her cousin Louie’s birthday on Saturday and Sunday got a visit from Brian’s Aunt DoRelle and Uncle Jerry who were visiting from Wisconsin. We also had a visit from Brittany’s preschool teacher MaryAnn Bardi, who ironically is the president of the Carrollwood Players who are putting on a youth show with actors ranging from 12-16 years old. They will be performing the play “18 Nervous Gumshoes” on June 22 @ 3:00 to benefit Brittany. MaryAnn didn’t realize at first that the little girl with cancer they were talking about was one of her former students.

My big baby was sick over the weekend, Christopher hurt his back at the senior splash bash the high school held at Adventure Island Water Park. He slipped and landed on a landscape timber which caused a huge goose egg of swelling on a vertebrae. He of course said it didn’t hurt, but it was very ugly and since it hit the bone and caused that much swelling we were worried. So, off to Doctors Walk in Clinic we went. As soon as the doc saw his back he assumed it was fractured. They took an x-ray and checked his urine for blood, which they found a trace of due to the hard hit. Fortunately no break was visible. Since it was the weekend the radiologist wasn’t there to read the x-ray, he would look at it Monday. The regular doc said he was pretty sure it was OK, or a minor fracture he couldn’t see that would heal by itself. We ended the weekend with Christopher getting and ear ache, so Sunday night around 10:00pm we were off yet again to another urgent care clinic. He has swimmers ear (probably from Adventure Island, this was one senior event we could have done without); his ear and back are doing better today. I think he has been to the doctor more times this weekend then the last few years.

As for Brittany’s chemo, she started yesterday at the clinic after a CT san of her chest at the hospital, so she had a long day but seems to be doing pretty good. She is still not eating; it has been about a month that she hasn’t been able to swallow food, so we have been giving her nourishment through her port. Even when she endures the pain of yogurt or soup she usually ends up vomiting it up. The effects of the radiation will last about two weeks after the session ends, so hopefully the sores will get better in the next few days, of course then the chemo she just had will cause the same sores through her GI track, so it is hard to say when she will be able to eat. I’m making her some homemade chicken soup again in the hopes that she will try to keep some down, I figure a mouth full here and there is better than nothing. She is hungry at times and it just breaks my heart when she cries because she feels the hunger and is willing to take the pain of swallowing knowing it will most likely come back up which is excruciating over those sores.

Well we are going to lay low this afternoon and catch up on things around the house. Take care and thanks again for your love, support and prayers. As always keep all the brave little soldiers in this war in your hearts and prayers.

Love,
Patty

Thursday, May 29, 2003 7:22 PM CDT

Yesterday was another grueling day; we had to get Brittany up early to go to the clinic for all her blood work. They were so backed up because of the holiday, we had to leave and come back after her radiation session. Brittany was so happy that this was her last treatment, now maybe her throat will get back to normal so she can eat. It’s been over three weeks since she has been able to eat anything; we are really starting to worry.

After she was done with her radiation, we headed back to the clinic to see the doctor and plan for her next round of chemo. Patty has been on the computer for the last couple of weeks researching different protocols that might be of benefit to Brittany. After some discussion we settled on one that would allow her to still be a candidate for some other trials that we are trying to get her approved for. This chemo is administered over five days and will give her a small break in between rounds. Than they hit us with some good news, they feel the can give her the chemo everyday in the clinic so she can stay home and not have to go to the hospital. We will have to give her fluids for hydration and anti nausea medication at home through her port, but whatever we need to do to keep her at home is fine with us.

It’s going to be tough on Brittany having to take her to the clinic everyday, but she wants to stay home so she is willing to deal with the 20 minute drive everyday. It should only take about three hours for the chemo to be administered so we will be home most of the day which is great because the boys can pretty much go on with life as usual. They miss so much of what’s been going on with their friends; we always pick them up to go to the hospital after school because we always try to eat as a family even if Brittany’s in the hospital. They have been great about giving up their free time, so if we can be home for this round of chemo they will be able to enjoy their summer without being afraid to make any plans.

Today our oldest son Christopher had his graduation ceremony, we are so proud of him. Brittany was able to attend and stay the entire time. I was a little rough on her at the end, but she stuck it out and we had a great time. I’ll post a picture for everyone to see. We are so glad that school is out for our boys, now we have the summer to spend enjoying each others company. I’ll leave here but update through the weekend.

Brian

Tuesday, May 27, 2003 5:36 PM CDT

It’s Tuesday and Brittany is still throwing up throughout the day. She still has one more day of radiation tomorrow and than its just chemo left for her. She was due to go in for her chemo tomorrow but her brother’s graduation is on Thursday and we would really like her to be there. The docs agreed that this was important for her to be there so Friday will be her admission day. She will go in for five days of intensive chemo and get two weeks off, but once again she will hit her nadir when all of her counts drop and probably end up back in the hospital.

We have so many decisions that we have to make as far as her care goes, we are so confused as to which is the best path that we should venture down. All this decisions have to be made relatively soon so we can get her where she needs to be without to much delay in her treatment. I just hope we make the right decisions because we will not get a second chance here.

I wake up every day with a pain in my heart and it never seems to go away, I keep looking at my beautiful daughter and wondering why we have to go down this path that never seems to end. It seems like we will have to live with this sorrow forever, I see no end in sight. But no matter how hard it is for me, I can only imagine how hard it must be for my precious Brittany. We will continue to live for the day and take the good ones with the bad ones and hopefully the good will out number the bad.

Thank you for all your prayers.

Brian

Saturday, May 24, 2003 10:32 PM CDT

We want to thank Martin and Bill Gramatica for the autograph signing at Beef o' Brady's last Thursday. What genuinely kind gentlemen they are. Also, thanks to those who came for the autographs and Beef o' Brady's for holding the event.

We finally made it home yesterday. Brittany is still very nauseous and vomiting several times a day, her throat is a little better than when her counts were down, but the effects of the radiation on the esophagus are really catching up with her. Her fever is still up and down, as long as it stays under 101.5 we can stay home. I so hope we stay home until next chemo, I think we have a good chance since we are giving her TPN(nourishment), benadryl and ativan through her ports so there is not much more they can do in the hospital.

We are very proud of our son Christopher he graduated high school this year. The ceremony is on May 29th, we pray Brittany will be able to attend. I feel such guilt that this school year….actually the last two years have gone by for our boys and we have all been so consumed with this cancer, we haven’t been the parents we were before this happened. Of course they understand and just want her to be ok, but that doesn’t change the fact that precious milestones in their life are happening like Stephen’s first year of high school and Christopher’s last. Brian and I are so thankful that the boys have grown into such personable and kind young men.

So, tomorrow we’ll have a graduation party. I think it will be good for Brittany even though she still feels lousy. We are trying to do as much as possible in the next few days before she goes back in the hospital for chemo next Friday. I want to thank her friends who have been calling Sara and Casey, Brittany has been so sick when you have called that it was impossible for her to talk.

Well back to cleaning, the house looks like a bomb went off every day for the last two weeks I was gone.

Hope everyone enjoys the long weekend, the weather here is great!

Love,
Patty

Saturday, May 24, 2003 11:30PM CDT

We finally made it home yesterday. Brittany is still very nauseous and vomiting several times a day, her throat is a little better than when her counts were down, but the effects of the radiation on the esophagus are really catching up with her. Her fever is still up and down, as long as it stays under 101.5 we can stay home. I so hope we stay home until next chemo, I think we have a good chance since we are giving her TPN(nourishment), benadryl and ativan through her ports so there is not much more they can do in the hospital.

We are very proud of our son Christopher he graduated high school this year. The ceremony is on May 29th, we pray Brittany will be able to attend. I feel such guilt that this school year….actually the last two years have gone by for our boys and we have all been so consumed with this cancer, we haven’t been the parents we were before this happened. Of course they understand and just want her to be ok, but that doesn’t change the fact that precious milestones in their life are happening like Stephen’s first year of high school and Christopher’s last. Brian and I are so thankful that the boys have grown into such personable and kind young men.

So, tomorrow we’ll have a graduation party. I think it will be good for Brittany even though she still feels lousy. We are trying to do as much as possible in the next few days before he goes back in the hospital for chemo next Friday. I want to thank her friends who have been calling Sara and Casey, Brittany has been so sick when you have called that it was impossible for her to talk.

Well back to cleaning, the house looks like a bomb went off every day for the last two weeks I was gone.

Hope everyone enjoys the long weekend, the weather here is great!

Love,
Patty

Tuesday, May 20, 2003 3:53 PM CDT

Brittany has been having a tough time these last couple of weeks. She has been trying to recover from the last round of chemo while continuing her radiation. She stopped eating over a week ago, it hurts her to swallow and she is coughing up blood. This is improving but she still cannot eat, she started drinking two days ago so we know we are moving in the right direction.

She has been having trouble with her ports also; every time they have to reaccess them they cannot find the one on her far right. Today the had to take her down for a fluoroscope to have it done, and it still took them three sticks before they got it in. She goes through this every seven days, because that how long they can leave the needles in before they have to change them.

Now on to some positive news, two days ago the Gramatica brothers came in to see Brittany. Martin is the kicker for the world champion Tampa Bay Buccaneers and his brother Bill is the kicker for the Arizona Cardinals. Brittany had a great time meeting them along with their mother. They brought her some pictures that they autographed and took some pictures with her and her brothers. It was a wonderful thing for these two gentlemen to do. On Thursday they are going to make an appearance at the Northdale Beef o Brady’s. They will be signing autographs and donating the proceeds to Brittany for her care. They will be there from five to six thirty, so all who want to meet the Gramatica brothers can see them there.

This is an incredible opportunity to meet two professional football players that are just so down to earth; we can’t even begin to express how grateful we are that they have decided to do this for Brittany. Our goal it to get her out of the hospital so that she can be there to enjoy this evening, but that all depends on what her doctors say. Please continue to pray for Brittany and hopefully we’ll see everyone Thursday night.

I’ve added a link to the Gramatica brothers website at the bottom of her homepage.

Brian

Friday, May 16, 2003 8:10 AM CDT

Brittany is still having a hard time bouncing back, she has been in the hospital six days and there is not much of a change. The only thing that has changed is her counts have finally started to rebound, they are still really low but at least they are on the way up. She is still sleeping all the time and has a hard time remembering who has come in to see her.

Her lung is still collapsed and now the other one has started to collapse also. She has a lot of wetness in her lungs which is starting to concern us. We are trying to get her up and moving as much as possible, but it’s hard when she feels so rotten. She still has to go down everyday for her radiation which is hard on her. Two more weeks to go with that and we will be done.

She is due to have another round of chemo this coming week, but there is no way she can handle it, she is still recuperating from the last one. If we can just give her a break for a couple of weeks and let her recover from the radiation she should be alright to handle the chemo. This is just going to be a long and hard battle with this chemo, I afraid that no matter what we do it’s going to be tough on her.

We had a scare when we admitted her; they did the cultures from her port and found an infection in the lines. We were told that if it truly was an infection that the ports would have to be taken out and new ones put in. That’s all we needed was another surgery, luckily it was a false positive and the ports are alright. Every day we hold our breath when the doctors walk in because we never know what they will tell us. We’ve heard so much bad news in the last two years, I don’t know if we can handle anymore. Let her just get better and get out of the hospital so we can get on with her treatment, and with just being a normal family again.

Brian

Monday, May 12, 2003 5:14 PM CDT

Shortly after my last entry yesterday Brittany spiked a high temperature and had to be taken back to the hospital. She was admitted to University Community Hospital in the ICU ward again. Her ANC was still 0 and she needed blood and platelets last night and again today. She just can’t seem to get her counts to rebound back very quickly this time and is extremely uncomfortable.

They did a chest x-ray last night and her lung has collapsed again. This time it seems to be a larger pneumothorax than last time. They have her on 10 liters of oxygen trying to inflate it again and hopefully this will work and they won’t need a chest tube. They never anticipated that she would get hit this hard from this round, but she is so weak from all that she has been through that her little body just can’t deal with all this.

She has an infection some where in her and they are hitting her pretty hard with antibiotics trying to kill it. They hope it isn’t the infection in her neck and back trying to get a foothold again. She will probably not be able to recoup in time for her next round of chemo, but she could use the break. She is continuing her radiation even though her ANC is 0, they usually want you up there around 2000, but with her they are willing to take the chance.

That’s all for now
Brian

Sunday, May 11, 2003 12:38 AM CDT

Brittany is having a hard time rebounding from the last round of chemo. She had a clinic visit on Friday to see what her counts were, and after that she wanted to go away for the weekend. We have a time share with some free bonus weekends so we figured why not. Brittany is so determined to enjoy life in the midst of all this so we live on what we call Brittany time, if she wants to do something and we can make it happen we do, but often times it backfires on us. Unfortunately this was one of those times. Her labs on Friday showed she needed blood and platelets before we could go to Orlando. We headed to the hospital and figured they could get a type and cross while we were getting her radiation. Well the blood was there and hung about 1:30, but the platelets didn’t get there until about 7:30 that night. We finally got out of there about 9:30 and arrived in Orlando an hour later.

Once we got to Orlando we got to our room and everyone went to sleep after that long and grueling day. The next morning Brittany woke up felling awful and started to spike a temperature. We watched it all day and finally had to pack up and come back to Tampa so we could be close to the hospital if we needed to go in. She still is hovering right around 101.5 which is the cut off point for going in. We have to be very careful because her ANC is 0 which is what fights off any infection. We also have to be careful because of her neck and back where that staph infection has settled in the hardware that they put in.

It’s hard to watch Brittany when she feels so miserable, she wants to do so much but has no energy to do anything. She keeps telling us she feels better but you can see that she feels worse and worse everyday. She is at the point where the sores in her throat are so bad that she can’t even swallow her own spit, and when she spits it out there is blood in it from the sores. This makes it so hard for her to take her meds because it feels like she is swallowing glass when she swallows the pills.

To top it all off Brittany feels guilty because Mothers day was going to be spent at Sea World, but now it’s spent here at home or we may still end up in the hospital if this temp keeps creeping up. Patty doesn’t care about any of that stuff. All she wants is for our little girl to be happy and healthy, but it’s hard to keep Brittany from feeling guiltily.

Tomorrow we have another clinic appointment to see what her counts are doing, hopefully they will be on the up swing and we can start getting her ready for the next round. We have to work on getting her to eat and fill out again because these take a lot out of her. Sometimes it will be days before she can eat anything after these rounds of chemo, but now with this radiation thrown into the mix we are in uncharted territory.

Thank you for checking in on Brittany and HAPPY MOTHERS DAY to all the mothers out there.
Brian

Wednesday, May 7, 2003 1:45 PM CDT

Brittany started up where she left off yesterday, throwing up. It has been a lousy day for her from the moment she woke up. She was not able to eat anything because of nausea, and she barfed right away. We took her to the clinic for labs, and she threw up there, so we asked for some IV meds to help her get through her radiation. We left the clinic and the hospital is only about a mile away but she threw up in the car.

We got her to the hospital hoping that the meds would be working, but she threw up there. We waited for a few minutes until she calmed down and she was able to go in for her treatment. She was able to lie on the table without getting sick, they thought she might not be able to get her treatment because you have to stay real still, but she did it. After we left she was alright until we got home and then she threw up again. This poor kid, nothing seems to be working for her with this round of chemo.

The docs want to try letting us give her more anti-nausea medicine through her port, and hopefully this will keep it a bay. They also put her back on fluids at home because she is barfing so much, and she will keep taking IV antibiotics for the staff infection in her back and neck. With any luck she will bounce back next week so we can do it all again. What a crappy way to have to live your life, going from one week of hell to the next and as soon as you start feeling better you know your going to get slammed again. The silver lining in this cloud is Brittany herself, she never complains about going back in for another round, she never gives us a hard time about taking her meds, she just does it and goes on like this is a perfectly normal way for a person to have to live. Hell if it was me you’d have to drag me in kicking and screaming after I went through the first round and seen what it did to me. All I can say about this little girl is she is so special and she goes through so much that there has be a reward for her in all this somewhere. There has to be a good reason why she has gone through all of this, and why she continues to have to fight so hard every day of her life.

Hopefully tonight will be a better night
Brian

Tuesday, May 6, 2003 11:09 AM CDT

Brittany came home form the hospital yesterday and is completely wiped out. She had a rough morning today, she woke up throwing up and it hasn’t gotten any better yet. She wants to eat but is unable to keep anything down right now. Hopefully this afternoon will be better for her after she has had nausea medicine and it has time to work.

She had to go for radiation this morning, and has some difficulty with lying on the table because she was reaccessed Saturday at the hospital, and they use a different type of needle which is more bulky and sticks out more. This hits the table and is driven up into her chest when she has to lay flat, it wouldn’t be so bad but the tables are so hard and nonforgiving.

Tomorrow we have to go to the clinic and have her labs done; she will be going into her Nader real soon. That is where all her counts bottom out and she is at risk of infections and catching any little cold or anything else that’s floating around out there. We have to be real careful when she is like this, no one can come over who is sick or has been recently sick. Brittany gets injections when her counts are down like that to help her rebound faster, she hates them so we always try to give them to her in an IV. The doctors don’t like this, but their not the ones who feel like crap and have to get stuck everyday on top of everything else.

Take care

Brian

Sunday, May 4, 2003 9:31 AM CDT

Brittany has one more day of chemo this round and then she gets a two week break. Of course she will go into her nadir and get pretty sick in a few days, so she really will not get the two weeks off. She is doing pretty good considering all that she is faced with. She is nauseous 24/7, but there’s not too much you can do about that. She eats one small meal each day, and sometimes that’s a chore for her to get down and keep down.

It has worked out great for us to be in the same hospital for chemo and radiation; it would have been so hard on Brittany to have to transport her everyday from one hospital to the other and than back again. She hasn’t gotten out of bed all week except to use the bathroom, the rest of the time she mostly sleeps. She feels that if she’s sleeping she won’t be able to throw up.

Her counts are already starting to drop; it doesn’t take long with this type of chemo and this amount. She still is battling the infection in her neck; some of the counts are attributed to this. We need to get this under control so when she bottoms out she doesn’t end up back in the hospital for high fevers.

Hopefully tomorrow we will be able to leave after her radiation treatment. She has the 11:15 time slot everyday until she is finished. The docs and staff down there have been great and have made this as easy on Brittany as humanly possible. I’m afraid to stay down there to long with Patty, all the women are pregnant and it may be contagious. Just kidding, I know that you can’t get pregnant just by being around them; you have to drink the water for that to happen.

Take care
Brian

Friday, May 2, 2003 9:46 AM CDT

We are two days into the chemo and everything seems to be going well. Brittany has done pretty good tolerating both the radiation and chemo together, and hopefully the next three days will be just as good. She is pretty tired and sleeps a lot, but this is the normal pattern for her on chemo.

The docs decided that she would not be able to tolerate both type of chemo and radiation together so the cut the VP-16. They want to see how she rebounds with just the one drug, and if she does well they will add 1/3 of the dose next time and work their way up from there.

She is in very good spirits and can’t wait to get home again to go swimming. She was able to swim the last day before she went in and really enjoyed it. She is a natural swimmer and really has a great time, she makes her brother go in with her, he’s not to happy because he says the water is still to cold. I think it’s pretty good exercise for her legs when she’s in the pool because she can really push it and not have to worry about falling down.

The end of the school year is winding down and she is pretty disappointed that she has missed so much school. They are having a fifth grade celebration and she is planning on attending providing nothing happens that puts her in the hospital during this time. All of her friends have been so supportive during this long and grueling ordeal, she really appreciates all that they have done for her.

After all she has been through; she says that we owe her some more pets. She feels that this should be her reward for dealing with this crappy disease. She wants a pug puppy, and a ferret, just what we need on top of the two dogs and three cats we already have. She loves animals and wants to be a vet when she grows up, by that time we will have a zoo if she has anything to do with it.

Take care and keep praying for Brittany and all of her friends with this terrible desease.
Brian

Tuesday, April 29, 2003 7:23 PM CDT

Brittany started her radiation yesterday, and what a day it was. We were at the hospital for quite awhile getting all the measurements just right, and they had to tattoo Brittany again. At first they just marked her with a paint pen, and we were going to keep marking her so she would not have to get the tattoos, but they were coming off to fast and she would not be able to swim with the marks. After they had all the measurements, they started her first treatment; it went well until we stopped for something to eat on the way home. She got violently sick in the restaurant and kept throwing up. We couldn’t even move her because she kept throwing up. Finally she calmed down and we got her out of there quick, but I’m sure it wasn’t quick enough for the other restaurant patrons.

When we got her home she was shot for the rest of the day, all she wanted to do was sleep and be left alone. She woke up today feeling much better. She wanted to go out today and just walk around until she had to have her treatment.

The treatment today went much better, she breezed through it and never felt sick. Tomorrow she will go inpatient for her chemo and continue with the radiation, this will happen for five days in a row, and then she will get two weeks off from the chemo. We are not looking forward to the next week; it’s going to be a rough one for this little girl. She is a little worried about the chemo, last time she had chemo she lost the use of her arm and hand for about three weeks, and it never came entirely back. Hopefully some of that may have been caused by the tumor and we will not have to contend with it this time.

I’ll update tomorrow after her chemo is finished
Brian

Saturday, April 26, 2003 6:20 PM CDT

Well we hope everyone is making the best of their weekend. We are so thankful that Brittany had a good week. We just wish it hadn’t been so consumed with doctor appointments, but what can you do.

Brittany will be de-accessed (remove the needle from the port in her chest) tomorrow since she finishes the IV antibiotics we have been giving her at home. She will go on oral antibiotics for about another month to ensure the staff infection from her previous surgery doesn’t return. She hopes to go swimming before we go in the hospital for chemo on Wednesday. The pool water is still chilly to me, but she says it feels good and I’m just old.

We are very happy that she will be able to receive her chemo at University Community Hospital, were she will be getting radiation. We were originally told we would have to admit her to St. Joseph’s for chemo since UCH does not have a pediatric oncology unit, and get a pass everyday to take her to UCH for radiation. The only unit at UCH the oncologist is comfortable allowing Brittany’s dose of chemotherapy to be administered is in Pediatric ICU. Luckily they cared for Brittany a few weeks ago and agreed to admit her into their care.

Well take care and please say and extra prayer for a sweet girl named Taylor who is in need of some pain relief.

Love,
Patty

Thursday, April 24, 2003 9:25 AM CDT

Once again we spent most of yesterday at the doctor’s office. We had to have Brittany deaccessed and reaccessed. Of course this had to be done between a trip to the plastic surgeon. First we had to have her port deaccessed after her morning antibiotic and then we ran to the other side of town for the surgeon’s appointment. He was very pleased with her progress; he told us he was sure that there would be problems with her surgery because this was such a high risk procedure. Once again she has shown them that she is not going to let this cancer or any of its side affects keep her down.

When we went back to the clinic to get her reaccessed they did a CBC and chemistry panel, her counts have been good but her liver and kidney functions have been all out of wack. The panel came back good, so we should be able to wean her off of the potassium supplements that she has been on. That’s just one less horse pill that she has to take everyday, so now she is down to about ten.

We are getting a little anxious waiting for this radiation to start back up. She needs the break, but we are so scared that this tumor will start growing again. She will have the weekend to play and Monday they will deaccess her port so that she will be able to go swimming for a couple of days before they have to start her chemo.

Last night two young ladies Ali Blake and Caroline Anderson came by to give Brittany a scrap book that they had put together. These young ladies were involved with the dance-a-thon and wanted Brittany to have this book. What a wonderful job they did, Brittany will be able to look through this book for years to come and remember what her school, friends, and community did for her. What a thoughtful gift that was, we feel so grateful for having the opportunity to have met these young ladies and appreciate all their efforts.

Brian

Tuesday, April 22, 2003 10:41 AM CDT

Brittany spent the day at the doctors and hospital yesterday. She had to get the scans done to measure her for her radiation therapy and get her marks on her body for the position that she will be in every time. They did not want to tattoo her again, so they painted her and gave us a paint pen to keep the marks visible.

She will start the radiation Monday and the chemo will start that Wednesday. They hope that she will be able to tolerate both at the same time, if not she will have to stop one and continue with the other until done and then finish the one she had to stop. The docs are anticipating a tough time for her with this regiment but feel that we have no other alternatives at this time.

She still is pretty wobbly when she walks, and does not want us to help her at all. She has taken a couple of tumbles, but still wants to do it on her own. Some days she seems stronger than others, but she doesn’t seem to be bothered by this. She is also sleeping a lot more comfortable, she has been able to sleep on her stomach which she hasn’t been able to do in two years.

We feel we have had to justify to the doctors why we have allowed the surgeons to operate so many times, but she feels and looks better than she has in about a year, and what’s the alternative , to let her lay in bed in pain and throwing up all the time. We feel that we will do what ever it takes, and go wherever we need to go to get her the care that we feel she is entitled to. She is a fighter, and we will give her the opportunity to fight this crappy disease as long as she needs to with whatever resources we can find for her. These doctors keep painting a very grim picture for her, but they have never run across someone quite like my Brittany, she has amazed them and baffled them before and will continue to do so.

Today Brittany just wants to go to the movies with her mommy; she just wants a girl’s afternoon. I guess that means I have to stay around the house and catch up on all the maintenance that comes with having two teenage boys home alone most of the time.

Brian.

Friday, April 18, 2003 9:47 PM CDT

Brittany is doing great! She pretty much walks without assistance. Her legs are still weak and give out from time to time, but they are the strongest they have been in two months. We've asked her to let us know when she is getting up to walk so we can be close by, but Miss Independent is getting sick of being treated like a "toddler", as she puts it. So we are trying to back off a little and give her some much deserved freedom, but it is nerve racking.

After the past few weeks with the three surgeries involving the spine(four including October). I can't tell you what it feels like for us to see her walk again, especially since the doctors were not certain she would. As parents we are so happy to see the difficult choices we've made regarding her surgeries have had a positive outcome. We are also very thankful for the wonderful surgeons who come up with solutions to Brittany's complicated situation, and remain as aggressive and determined as she is.

As always thank you so much for your prayers and good wishes. Please keep all the precious children that suffer from cancer in your heart. Happy Easter!!

Love, Patty

Thursday, April 17, 2003 7:50 AM CDT

It was a pretty uneventful day yesterday for Brittany. She had to go to the clinic for blood work and labs, so she may not have to go on Friday depending on the results we get back today. She is so glad to be home and out of that hospital, even a bad day at home is better than a good day at the hospital.

Today were going to try to catch up on some of the errands that we put off for the last seven weeks. She feels like going out so it’s a good day to get some of this done. We have so many places to stop, and every where we go people want to catch up with Brittany, so it will take the good part of the day to complete this. Tonight it the meeting at the Children’s Cancer Center so we will be heading over there about six. It’s been so long since Brittany has been able to see all of her friends there, she has missed the last three or four meetings.

These meetings are good for Patty also because she is able to vent with other mothers about all that is going on and any problems they have. Sometimes I go to, but I like Patty to have a place that she can go and say what she feels without having to worry how I might react. She has meet a lot of wonderful people through these meetings and built some strong friendships.

Time to go and hook Brittany up to her antibiotics
Brian

Tuesday, April 15, 2003 12:04 AM CDT

Early this morning Brittany made her way across the bay to come home. It was a journey that we’ve been anticipating for a long time. She left St. Petersburg about six this morning because home health care was dropping off her supplies and sending a nurse over to show us what to do. What a joke, we’ve been doing this for two years now and I doubt there’s anything they can show us that we haven’t already done.

She will continue to get IV antibiotics through her port for two more weeks, and then she will continue with oral antibiotics for another month after that. It’s not too bad; she only gets them twice a day, ten in the morning and ten at night for two hours. So most of the time she will be able to move around at will, without being tethered to the backpack IV.

It feels great to have her home, it’s hard to believe that she spent most of the last six weeks in the hospital with only a little four day break in there where she was home. Tomorrow we have to take her to the clinic to get deaccessed and reaccessed and then she has a few days until we have to go in for blood work and x-rays. We still don’t know exactly when she will start her treatments again, we have to wait for some healing and the docs to all agree on when she is ready. We want to wait, but we also fear to much time without anything being done on our part to keep this cancer at bay.

Got to go spend some time with my baby
Brian

Monday, April 14, 2003 3:18 PM CDT

Today we thought we were going to go home, but we have to wait one more day. The drain was removed and the dressing was also removed, and it appears that the surgical site is healing nicely. We have to wait a day because of the type of pain medication Brittany is taking; she has a patch that was put on and needs to be in place for a day before they can turn off the IV. Once they turn off the IV she will be able to get a pill for break thru pain, but the patch should keep her comfortable long term.

After my last entry yesterday we had a problem with her pain meds AGAIN. One of the nurses came in to give her the antibiotics, but kept the line clamped off and ran her narcan in at five times her normal rate. Narcan is her medication that counter acts a lot of the side effects of the narcotic she gets for pain. With that amount going into her, it sent her body into withdrawals from the narcotic. She started acting real crazy and could not control her body. She new something was wrong but couldn’t tell me exactly what she was feeling. Luckily I was able to figure out what the nurse had done and stopped her IV, before any more was able to get in her. The pharmacy was called and they said that the half-life was only an hour and she was in no danger from this overdose. Good thing it was something that could not harm her or we would have been in trouble. Once again we are left with the feeling that we can never let our guard down or there could be drastic consequences.

As I sit here writing this journal entry, both of the beautiful women in my life are sleeping (Brittany and Patty). It gives me a chance to just sit here and watch them. I have come so close to losing both of them to this god-awful disease that I savor these moments when they both are at rest and not thinking about how this has crept into every nook and cranny of their lives. I pray that no one else ever has to feel the pain and fear that this disease is capable of inflecting.

Until next time.
Brian

Sunday, April 13, 2003 5:00 PM CDT

It’s Sunday, and Brittany is doing great. She is moving around in bed without to many headaches, and is getting up frequently. She is still in pain, but it’s seems to be getting better also, I guess after all the surgeries it’s fair to say that this is not unusual. As long as she keeps improving, we will continue to be happy.

She is looking forward to being home for a little while. It’s hard for her when she is away from all of her friends. She likes to be in the middle of all the action and not sitting on the sidelines like she has been. When we’re at home, we are always on the move with people to see and places to go, so we never seem to get bored. At the hospital it’s just the opposite, just sitting here all day and night waiting for this test or that.

We have to wait for the plastic surgeon to come is and see Brittany before we can go home next week. He has been out of town since her did her surgery last week. All the other doctors and surgeons have been pleased with her progress and he should be also. He still needs to pull the drain out of her back before we can leave, and with the small amount of fluid coming out of her this should happen when he sees us on Monday. We never get to excited about leaving ahead of time, because with our luck we always seem to run into some road block that delays us. So we wait and see, if it happens it happens, if it doesn’t it doesn’t.

It feels great to be able to write about all good things, it seems like we went through such a long patch of just bad news. Thank you for all your support and prayers.

Brian

Friday, April 11, 2003 10:02 AM CDT

Yesterday, the first day out of ICU was a great day for Brittany. She was able so sit up without any headache at all, and was even able to get out of bed for a short time. She continues to amaze all of us, including the doctors and nurses. She has such determination to work beyond all of this and get better.

When she was sitting up she complained that her shoulder hurt and she wanted a x-ray to see what was wrong. We had to explain that they used a muscle in her shoulder to fold over and help repair the leak in her spinal cord. She is going to be pretty sore for awhile until this heals. We are just so thankful that they were able to see a visible leak and fix it, without guessing where it was.

When the surgery was done they tried to put a lumbar drain in the spine to help reduce the pressure and allow for healing, but she had lost so much spinal fluid that none would drain which prevented them from leaving this drain in. They said that she would replenish the fluid in a few days and this would allow the headaches to stop all together.

Her appetite is good and she looks better than she has looked for a few weeks. Even right after surgery she looked great, it was like a huge weight had been lifted off and she looked relieved. She will most likely be in the hospital until early next week and then be released to come home for a few weeks before any of her treatments resume. She definitely needs a little break here to heal and not think about any of this cancer crap.

She misses all of her pets, and they miss her too. Her cat Mikee is driving everyone nuts at home because no one else will sit with him like she does. Well that’s it for today, at last we feel like we can breathe a sigh of relief for a few weeks. Thank you for keeping Brittany in your prayers and please continue to do so.

Brian

Friday, April 11, 2003 10:02 AM CDT

Yesterday, the first day out of ICU was a great day for Brittany. She was able so sit up without any headache at all, and was even able to get out of bed for a short time. She continues to amaze all of us, including the doctors and nurses. She has such determination to work beyond all of this and get better.

When she was sitting up she complained that her shoulder hurt and she wanted a x-ray to see what was wrong. We had to explain that they used a muscle in her shoulder to fold over and help repair the leak in her spinal cord. She is going to be pretty sore for awhile until this heals. We are just so thankful that they were able to see a visible leak and fix it, without guessing where it was.

When the surgery was done they tried to put a lumbar drain in the spine to help reduce the pressure and allow for healing, but she had lost so much spinal fluid that none would drain which prevented them from leaving this drain in. They said that she would replenish the fluid in a few days and this would allow the headaches to stop all together.

Her appetite is good and she looks better than she has looked for a few weeks. Even right after surgery she looked great, it was like a huge weight had been lifted off and she looked relieved. She will most likely be in the hospital until early next week and then be released to come home for a few weeks before any of her treatments resume. She defiantly needs a little break here to heal and not think about any of this cancer crap.

She misses all of her pets, and they miss her too. Her cat Mikee is driving everyone nuts at home because no one else will sit with him like she does. Well that’s it for today, at last we feel like we can breathe a sigh of relief for a few weeks. Thank you for keeping Brittany in your prayers and please continue to do so.

Brian

Wednesday, April 9, 2003 10:59 AM CDT

Good News!! Surgery went better than anticipated. Brittany’s spine had an obvious leak were she was losing spinal fluid; this caused the headaches and nausea. This was much better than her spine losing fluid because of irritation from the infection. Since it was a leak they patched it and she won’t have to wait days or maybe weeks for the irritation to have heal. They still flapped one of the muscles in her back over her spinal cord for added protection and blood supply. The docs were very pleased with the condition of her skin tissue and muscle, after all the chemo and radiation she’s had they expected more damage. Her previously collapsed lung held up much to the Anesthesiologist surprise. She came out of surgery without her ports accessed again; even after we were promised new needles would be put in while she was asleep. As you can imagine we were livid and she was miserable since they had to access her in ICU without any numbing cream. So we will deal with that today. After she calmed down about the ports she did great, she was eating “Skittles “ and looked better than before surgery. I truly believe God was with her last night so thank you so much for your continued prayers.

Love,
Patty

Monday, April 7, 2003 10:03 PM CDT

Update on surgery - As of this evening all we know is the she is being added to the surgery schedule for sometime after 3:00PM tomorrow (Tuesday). The surgery is expected to take about five hours.

It’s Monday, and we’re still here at the hospital. The fevers seemed to have subsided, but the headaches persist. There was a brain MRI done this afternoon, and we are still waiting for the results. Dr. Letson, Brittany’s ortho oncologist called today and said Brittany needs another surgery. The spinal cord keeps leaking fluid out and this is one of the reasons that the headaches hurt so bad every time she gets up. They are bringing in a plastic surgeon to operate with her Neurosurgeon.

The plan is to go in and take a muscle from her back and wrap it around the spine. This will hopefully protect the spine and keep it from leaking this fluid into the back. The tissue keeps collecting this fluid and putting pressure on the cord, and then when she moves, all the fluid drains and this causes a dramatic change in pressure, which causes the headaches.

We still don’t know what time or what day this surgery will take place, we’re waiting for the plastic surgeon to come from another hospital to talk with us and tell us when his schedule is open. I assume that it will be pretty quick considering the severity of the situation.

I can’t believe that Brittany has to have the third surgery on the same site in less than three weeks, and the forth on the same site total. The amount of scar tissue that is building must be tremendous. These last two years have been so tough for our family, but most of all for Brittany. It seems like we have made no headway and every time we think something positive is happening, she’s slammed with more bad news. But once again when Brittany was told about this latest development, she accepted it and just wants to get it behind her and start the healing process again.

I have learned so much from my beautiful daughter, and I’m sure that she has a lot more to teach me. She has taught me how to live, and how to love. There is no gift more precious than a child’s love, and I thank God everyday for this angel that he has given us.
I watch what she has been through and I question his motives. I don’t think it’s fair for anyone to have to endure the amount of pain and fear that Brittany does every day of her life. If I’m missing something here in the big picture, I wish someone could explain it to me where it all makes sense. Brittany’s faith is strong, but I must admit I question mine more and more everyday.

As soon as we have date and time we’ll update

Brian

Monday, April 7, 2003 2:09 PM CDT

It’s Monday, and we’re still here at the hospital. The fevers seemed to have subsided, but the headaches persist. There was a brain MRI done this afternoon, and we are still waiting for the results. Dr. Letson, Brittany’s ortho oncologist called today and said Brittany needs another surgery. The spinal cord keeps leaking fluid out and this is one of the reasons that the headaches hurt so bad every time she gets up. They are bringing in a plastic surgeon to operate with her neurosurgeon.

They plan is to go in and take a muscle from her back and wrap it around the spine. This will hopefully protect the spine and keep it from leaking this fluid into the back. The tissue keeps collecting this fluid and putting pressure on the cord, and then when she moves, all the fluid drains and this causes a dramatic change in pressure, which causes the headaches.

We still don’t know what time or what day this surgery will take place, we’re waiting for the plastic surgeon to come from another hospital to talk with us and tell us when his schedule is open. I assume that it will be pretty quick considering the severity of the situation.

I can’t believe that Brittany has to have the third surgery on the same site in less than three weeks, and the forth on the same site total. The amount of scar tissue that is building must be tremendous. These last two years have been so tough for our family, but most of all for Brittany. It seems like we have made no headway and every time we think something positive is happening, she’s slammed with more bad news. But once again when Brittany was told about this latest development, she accepted it and just wants to get it behind her and start the healing process again.

I have learned so much from my beautiful daughter, and I’m sure that she has a lot more to teach me. She has taught me how to live, and how to love. There is no gift more precious than a child’s love, and I thank God everyday for this angel that he has given us.
I watch what she has been through and I question his motives. I don’t think it’s fair for anyone to have to endure the amount of pain and fear that Brittany does every day of her life. If I’m missing something here in the big picture, I wish someone could explain it to me where it all makes sense. Brittany’s faith is strong, but I must admit I question mine more and more everyday.

As soon as we have date and time we’ll update

Brian

Saturday, April 5, 2003 2:14 PM CST

I guess I was a little optimistic last night about Brittany’s fever. She spiked at 104.4 around midnight, just after I updated the journal. This is the highest temp she has had so far. She had just taken Tylenol at 11:00, so we couldn’t depend on that to break the fever. God only knows how high her temp would have been if it had not been on board already. Needless to say the night was long and difficult. I kept wiping her down in hopes to break the fever, but she hung around 103 until her second dose of Tylenol kicked in around 5:00 (boy I wish she could take Motrin, but it eats up platelets). Her breathing was labored and shallow, so I asked for respitory to come up take a listen and maybe repeat her asthma treatment. I was afraid that possibly pneumonia was setting in and causing the higher fever. They assured me her lungs still sounded clear.

When Brittany woke up this morning asking for her bag of “Skittles”, she claimed to feel pretty good other than the persistent headache. Her fever is gone again, which has been typical in the morning and she asked Brian to bring her food. So we’ll hold out hope that today is the turn around day and this virus is almost at the end of its cycle. Hope you have a great weekend. Thanks again for your concern.

Love,
Patty

Friday, April 4, 2003 11:12 PM CST

Well today has had it’s moments. Most of the day Brittany was much improved, then late afternoon her port stopped working. She was due to be re-accessed tomorrow anyway (the needle has to be changed every 7 days), so rather then messing with the same needle (which is painful), we thought we’d save her that pain and have them just re-access her tonight. Sounds good in theory, unfortunately it took three people trying, and 4 sticks to get the new needle in. By the time this ordeal was over, Brittany was off her IV pain meds for over 6 hours. We tried to get her to take oral pain meds, but since they make her pretty queasy she chose not to take anything and was pretty comfortable, other than the persistent headache. It’s a great sign that her pain was tolerable.

Early in the day, her surgeon Dr.Letson came by. He felt since her headache and light sensitivity (we’ve been sitting in a dark room for a week since the light hurts her eyes) was a little bit better and her fever wasn’t spiking as high at night, he was Ok with her going home on IV antibiotics as soon as the Oncologist was comfortable. The biggest hurdle we have is her blood counts, they continue to look worse everyday due to the infection, and we suspect she will need a transfusion tomorrow. Hopefully her fever will stay down and her counts will recover quickly now that she seems to feel better. As the docs suspected her blood cultures show no bacterial infections and the viral cultures which is most likely what she has (spinal meningitis or the flu), can take weeks to grow and don’t respond to antibiotics. She will hopefully be recovered before we find any answers, if we ever do. So we just have to hope she continues to improve.

Of course we have been consumed with Brittany, but the more I suspected meningitis, we worried about exposing other children. Fortunately the kids she was with when the fever started are OK. The docs say it is very unlikely anyone could get this type from her. The type she might have would have been a simple cold or flu in the person that passed it to her, but it settled in her spine since it is her week spot.

Well this has been another emotionally draining day. Brian has gone home and I’m going to lay in bed with my baby girl and hopefully get her to sleep soon. As much as I cherish our down time alone, this is the hardest time of the day for me. I look at my beautiful angel and pray God hears our prayers. I truly believe he has since he has surrounded us with such loving support. We thank you so much for checking on her and leaving her such great messages. I read them to her or if she can she goes through them herself. Please know it means a lot to her that she is so loved and supported. Thanks again for keeping her in your hearts and please pray for all the special children who suffer from this monster.

Love,
Patty

Thursday, April 3, 2003 11:06 PM CST

Brittany had a rough day today. She was very uncomfortable because of the surgery, and then she had problems with her pca pump. They had the wrong syringe in it and it stopped giver her pain medicine once it reached a certain level. She was in so much pain they were going to call the surgeons back because they thought there was a problem, but Patty finally realized that the pump was not giving her the medication even though it said it was. The pain management team finally got her comfortable after about three hours.

All this could have been avoided if they had followed the orders that were written for Brittany before surgery, but the anesthesia doctor changed her dosage and ended up with the wrong syringe. He felt that the dosage was too much for her, but failed to realize that she has been on these drugs for so long that she has built up a tolerance for them.

She still continues to battle a high fever through all of this, but the headaches have seemed too eased off a little. After they were able to get the pain under control she was able to sleep for a couple of hours in the late afternoon. Then she had some time she spent with her brothers in the evening and was able to eat a little after that.

After the surgery they said she had decreased sounds in her lungs on the left side, and feared that the lung collapsed again during surgery when the tube was put in her throat. There was an x-ray done this afternoon that ruled this out. They are keeping her on high amounts of oxygen just to be safe.

We’re still waiting to here results on the different cultures that were sent in, but nothing has started to grow as of yet. The said there may not be any growth at all because she has been on antibiotics since Saturday, so they would have to kind of put a puzzle together to figure out where this infection is and what type it is. Again this reinforces the term “practicing medicine” and gives us little or no faith that we will ever find out what we have been dealing with.

Again I don’t want to sound like I don’t have any faith in the docs, but it’s very frustrating when Brittany has been there almost a week and we don’t know any more now then we did last Saturday.

Brian

Wednesday, April 2, 2003 9:27 PM CST

Well things took an unexpected turn today, we thought we would be transferred to the hospital in Tampa but we ended up having surgery instead. Brittany continued to have high temperatures and a high sensitivity to light, so they decided that they needed to go back in to the same site and see if there was something going on in there. They went into the same incision for the third time and looked around for new tumor growth. None was found, so they cleaned out the site and put a drain in and closed her up.

We talked with the docs about doing a spinal tap while she was out and they agreed, so the took some fluid. They said there was a lot of pressure there, which would explain the bad headaches that she has been having. The fluid looked like there might be some infection in there, but we’ll have to wait for a couple of days to get the results back. The concern is there may be Meningitis in this fluid. When it rains it pours. I can’t believe that now we have to sweat this out for the next couple of days. It looks like she will have to stay in this hospital for another week to recuperate and wait for these results to come back

At least we were able to see that there is no new tumor growth on her spine, so we feel somewhat relieved while we have to wait to start the radiation. It’s going to be a week of just relaxing and sending time with Brittany without trying to worry about all these test results. She came out of the surgery felling pretty good considering it was only two weeks ago that she had the last one. I can’t explain the pride I have for my daughter when I see her deal with these surgeries like she was a grown adult. She never complains, gripes, or gives us any grief when we tell her she has another one to go through. She is truly a braver and stronger person than most of us, and I feel she was put here to make us appreciate every minute we have, and not complain about all the stupid stuff we have no control over.

Thank you again for all your support and prayers

Brian

Wednesday, April 2, 2003 10:49 AM CST

Yesterday when it was time to make a decision about putting in the chest tube, they did another x-ray to see if there was any improvement. The x-ray showed that the lung had inflated a little and they would give it another day. We are definitely heading in the right direction.

Dr. Letson and Dr. Veronis who are the surgeons came in to see her last night; they did not feel that a chest tube should be put in. They even called a thoracic surgeon from Moffitt, and he felt that with all she has going on he would not recommend a chest tube either.

The surgeons drew some fluid from Brittany’s back at the surgical site to see if it was the source of the infection, the fluid was a clear yellow with a little blood so they didn’t believe that it was infected. They made her sit up and put a huge needle right in the middle of the incision to draw this, but true to form Brittany just sat there and let them do it.

Dr. Letson wanted to transfer Brittany back to Tampa and talked to the doctors on the phone, but of course this never happened because of the lack of communication on the part of the doctors over here. Today were going to try again. With any luck we’ll be over there by tonight.

Today started out great, another x-ray was done and it showed that the lung had completely reabsorbed the air and was back to normal. That’s the first good news we’ve had in several months. Brittany looks and feels better, but this nasty fever keeps hanging on. It stays down during the day, but at night it peaks.

She is going to start the radiation in the next few days, but the chemo has to wait until this infection has been cleared up. Her counts are low because of what’s going in so chemo would only suppress any healing and knock the counts even lower. We feel ok with just starting the radiation because her lungs still look clear in a chest ct scan that she just had.

Well that’s it for today

Brian

Monday, March 31, 2003 4:01 PM CST

Brittany has been at All Children’s Hospital since Saturday with a high temperature. We thought that her surgical site was infected, but this has been neither confirmed nor ruled out yet. While the doctors were trying to pin down this infection source, they did a chest x-ray and found that she has a pnemorthorax, which is a collapsed lung. We’ve been told that this is very painful, but Brittany has not been complaining about any new pain. They feel that she is in so much pain all the time that she doesn’t even notice this new pain. How horrible is that!!!

She had a pretty rough weekend, but today her fever seemed to come down a little. She was supposed to start her radiation today, but that was put on hold until we can get her a little more stable. Of course now we have to start worrying that the longer we put off this radiation and chemo the more of a chance this %#@*&(!* cancer has to get another foothold. We’ve come so far to be knocked back like this.

They’ve been trying to get her lung inflated without having to put a chest tube in, but so far they haven’t had any luck. If there is no chance tomorrow morning they will have to put the chest tube in. It will have to stay in for a couple of days and then they will remove it and hope the lung stays inflated. If it collapses again they will then need to go in and find where the hole is.

Every time this poor kid seems to get one step ahead, she gets knocked back three. It about time she catches a break. She continues to remain strong and in high sprits. She has a good appetite and still sends us out for every meal, something about that hospital food just turns her off. It wouldn’t be that bad, but there is nothing close so I have to drive about fifteen minutes to find something. But if that what I need to do to get her to eat, it’s a small sacrifice to have to make.

Take care
Brian

Saturday, March 29, 2003 11:25 AM CST

Last night Brittany and several other girls went to a good friends house ( Molly Edwards). The girls were having a sleep over, Brittany had planned to sleep home since the nights are pretty uncomfortable and usually emotional. She was feeling pretty bad most of the evening, but of course never really let on how bad she felt. She seems to be so tired of being sick so holds out as long as she can. Her temperature was over 102. We called the Dr. and asked if we could wait the temp out at home on antibiotics since her immunity is up, she agreed.

Unfortunately this morning her incision is swollen, so it looks like that may be the source of infection. So, we're headed back to All Children's Hospital in St. Petersburg ( the hour ride is getting so old). We asked to be admitted to St. Joseph's Cancer Center in Tampa, but her Dr. feels the infectious disease doc should evaluate the situation, especially since the incision is by her spine. The plan will be to transport her to St. Joe's cancer center in the next day or so.

Today is our son Stephen's 15th Birthday. Something always seems to happen on a birthday or special event. Times like this remind us of the sacrifices our sons so willingly accept to be with their sister. So we will all go to the hospital and at least be together. Again thanks for you concern and prayers as we maneuver through yet another ordeal.

Love,
Patty

Friday, March 28, 2003 8:53 AM CST

Just sitting here at the computer table trying to figure out what is worthy of putting in this journal. I find it difficult sometimes to put my thoughts in print where everyone can see them, I sometimes feel that my opinion is so clouded by self doubt and anger that it’s not fair to impose it upon any one else.

Nothing new as far as physical progress for Brittany, well that’s not quite true. She is getting stronger, but the coordination is still the area of concern. Mentally she’s as strong as ever, she feels great and she has virtually no pain in her arm and back. She continuously makes jokes about the way she walks; this has been her biggest setback so far. She however remains quite determined that this to shall pass and she’ll move on to the next hurdle.

The hardest part right now is the waiting, we sit here and contemplate all the decisions we have made and all the decisions that are yet to be made. We wonder is any of them have been right or if any of the future decisions will be right. We are given no direction in the path that we should take, which gives us little or no confidence in our ability to make the right decision.

A lot of time is spent on the internet doing research and trying to find other drugs out there that might hold some promise, no mater how small that promise may be. We have to feel like we have plan B and plan C ready. Unfortunately were already on plan E and F.

We’ve already set an appointment up for the Mayo Clinic. The one in Florida doesn’t see children, so we have to go to Minnesota. We have to go up there in May, after she is done with her radiation. There is a program up there that she is going to tested for, and hopefully she will be a candidate for it.

Last night we were taken to dinner by our friends at Trans World and Camp Good Days. We had a great time, Brittany had so much fun. She got to eat her favorite, Chicken Alfredo. The food was fantastic, but the company was even better. I have never seen such a wonderful group of people all working in one location. They have become true friends and very important additions to Brittany’s life. She looks forward to our visits with them and talks about it constantly after.

I hope that someday soon I will be able to stop writing in this journal, but until that day comes, this gives me an avenue to express some of what were going through and dealing with. My hope is that there would never be another parent who had to start a journal like this for their child. We are thankful to Caringbridge for this vehicle to keep in touch with our family and friends.

Brian

Wednesday, March 26, 2003 7:51 AM CST

Well it’s Wednesday and today is clinic day for Brittany. She hasn’t made to much progress in the walking department, she strong but still lacks coordination. She tries very hard, but I guess it’s going to be a slow process. It’s very frustrating to her because she can’t sit still for very long without going insane. She always wants to stand up and watch when someone is making a meal for her or just baking something.

Brittany is a little worried about starting the chemo and the radiation together on Monday. She knows what each one does to her by itself, so to combine them together is quite frightening. She has to be admitted to St. Joseph’s hospital in Tampa, because the doctors don’t feel that the type of chemo she will be getting can be administered at the same hospital that she is getting the radiation. So that means that everyday we will have to transport her from one hospital to the other for radiation, and then back to the other for chemo. It’s going to be a pretty rough time for Brittany, because she will be sick from the chemo, and have to ride all over in the car feeling that way.

We’ve been trying to get her out of the house on short little day trips to break up the monotony, but it’s hard to find places that she can go with the wheelchair and not feel like she’s missing too much. She wants to go to Busch Gardens and ride the roller coasters; this is her favorite thing to do. Hopefully it won’t be long, and she will be able to do the things that she loves to. When you’re as active and “nuts” as she is, it’s hard to sit on the side lines and watch everyone else do these things.

Brian

Sunday, March 23, 2003 12:59 AM CST

Brittany’s first day home was very relaxing for her. She took it easy and caught up on her sleep. She still is pretty shaky on her feet; we have to hold her while she walks. She still has problems with her legs giving out when she tries to go up the stairs, this will get better as she gets stronger. It’s amazing how fast you loose coordination when you don’t use something. We are very thankful that she is showing as much progress as she is.

We are looking forward to a nice week off with her brothers and family and friends, she misses doing everyday tasks. She told me yesterday that she feels like the Frankenstein monster, because that the way she looks when she walks. She is a very determined little girl who will get through this just as she has gotten through all the other setbacks.

Today it’s pretty horrible outside, it’s been raining since five this morning, so not much to do to keep her occupied. She has a list of things she wants to do before we go back in the hospital next week. She even has a list of food she wants to eat before then; these steroids really give her an incredible appetite, she really needs to bulk up before we start treatments again so I guess this is a good thing.

That’s about all there is today, again thank you for keeping up on Brittany’s progress and thank you for keeping her in your prayers.

Brian

Friday, March 21, 2003 8:15 PM CST

Brittany came home from the hospital today. It took awhile, but she’s here. We were supposed to leave the hospital at one, but then the doctor decided that she wanted
Brittany to have a bone scan at the last minute. After being injected with the radioactive contrast, we had to wait three hours before we could get the scan. Once the scan started it took about an hour.

When we left the hospital she still was pretty wobbly on her feet. It seems to be getting better, but it’s probably going to take a little time. Hopefully by the end of the weekend she will be a little steadier on her feet. She is so impatient; she wants to run before she can walk. I wish she would slow down and take it a little easier.

Tomorrow is a day of rest for Brittany, she’s going to take it easy and get strong for next week because her brothers have off from school. It would be nice to be able to do some things with the whole family before she starts treatment again. Her brothers really miss when she’s not around, there’s no one here to keep them in line.

Brian.

Thursday, March 20, 2003 7:50 AM CST

I’m happy to report that Brittany had another fantastic day. She was getting up out of bed all day; she even took a couple of steps although they were pretty wobbly. The goal is to get her out of the hospital on Friday. She will get a week off before she has to resume treatment, they are afraid that her incision would open up if the start any earlier than that.

We spoke to the doctors at great length many times over the past few days, and have decided that she will get radiation and chemo therapy at the same time. They usually don’t give both at the same time, but feel that they cannot give this cancer any time to grow. If they give her radiation only her lung lesions could start to grow again, and if they give her chemo her spine could see growth. It’s a catch 22, It’s going to be very hard on her both physically and mentally to have this all going on at the same time.

Initially she had three rounds of chemo on this regiment, and after radiation was over she would have gotten two more. Now she faces a minimum of six more rounds, and if she can handle it they will keep hitting her with chemo until her body can’t take it anymore. It’s unbelievable that she has been getting chemo for almost two years. The first year she spent three weeks of every month in the hospital, at least the regiment isn’t quite as bad as that one was.

The physical therapist was very happy with her progress, and decided that she was done working with Brittany. She said she would coach us from the sidelines of what Brittany needed. Sometimes it becomes overwhelming because we feel we have to be so involved in every aspect of Brittany’s care. We find ourselves second guessing every decision that is made by the doctors and nurses; we stay with Brittany every minute of every day to ensure that she gets the proper care. We will become her physical therapists and continue to push her to improve. We do it, and will continue to do it because there is no sacrifice that is too great for my beautiful daughter. She will never feel that something else was more important than her.

The amount of admiration I have for Brittany and for my wife Patty is enormous. Both are true fighters, my wife beat cancer eight years ago. We believe she went through this so she could be with Brittany and truly understand how she was feeling, and be able to offer some type of comfort. It’s hard to truly understand this disease and what it does to you unless you have been there. We were devastated when Patty was diagnosed, but then to have such a hellish disease attack your baby, it brought a whole new meaning to the term “living hell”.

We find we are in a type of limbo most days, you have your routine of doctor visits, lab test, and scans, but the rest of the time life seems to have stopped. It’s like your on hold, everyone else’s life continues but your stuck in this one place trying to survive, trying to make sense of what ever you can. You look up and two years have gone by, but you’re still in the same place with no changes. All the progress you thought you were making was an illusion. This is when Brittany makes all the difference, we look at her, and we see her zest for life. She doesn’t let this disease slow her down in any way; she does what she wants when she wants. Usually she blows our minds with what she is able to do.

Brian

Wednesday, March 19, 2003 8:08 AM CST

Brittany had a pretty promising day yesterday. She started out in a lot of pain, and then physical therapy came and helped her get up. Of course the pain level rose quite a bit during and after this. She did great though, she was able to sit herself up in bed with very little help, and sit there for awhile. Then we helped her stand up for a few seconds, she was very wobbly, but showed great determination while doing this. That was all she could handle at that time.

We let her relax for most of the afternoon, and then in the evening she got up again.
She was a little stronger this time and in less pain, so she was able to stay up a little longer. Brittany is so determined to get up that she will; there is no doubt in my mind that she will be walking by the end of the week.

When the physical therapist was in to work with Brittany, she did not push to hard because she said that knowing Brittany, she would do more than they expect sooner than they expect. So when she comes in today I’m sure she will be pleasantly surprised with her progress already.

Hopefully Brittany will show enough progress to be released from the hospital this week so she has some time at home before she has to start the radiation again. A little break would be good for her now, she wants to play with her friends and just be normal for a few days. She starts radiation again on the 31st of March. We have to talk to the radiation oncologist again to see how much her plan has changed, there will defiantly be extra sessions added. but we still don’t know how many.

That’s all for now, please keep Brittany and all of her friends in your prayers.
Brian

Monday, March 17, 2003 8:38 AM CST

Let me start with an update on Brittany’s progress. The surgery is over and she is trying to rest comfortably, but this seems like it may be a struggle that she is not going to win. The surgeons removed a large tumor that had grown right around the spinal cord. It had compressed the cord so much that she had lost use of her legs. They were able to remove all that they could see without doing any more damage to the cord. Now we have to play the waiting game again, they said she may get the use back of her legs in a week, or a month, or possibly even never. But it looks promising, because when they removed the tumor the spinal cord went right back to the way it should have been.

It seems that this tumor had grown while she was on chemo and radiation. The lesions that she had in her lungs responded well to the chemo drugs, but the spine does not have a good blood supply so the drugs were not hitting this tumor. Then when the radiation was started the tumor was too big for the radiation to do much of anything. Now we are starting with no lung lesions and no solid tumor in the spine so hopefully the radiation will work much better. She has to go through radiation again and then start back on the chemo drugs. This poor kid never gets a break; they want to start this in as little as two weeks after this surgery.

She always seems to bounce back very quickly from all the surgeries that she has had, so hopefully this one will be the same. It truly amazes me and breaks my heart all at the same time when I watch what this beautiful little girl endures, and fights through on a daily basis. I’m a grown man, and I truly believe that I could not fight this disease with the strength and dignity that my precious daughter has been able to do.

Now I need to tell so many people how extremely grateful we are. I’m referring to the dance-a-thon that was held for Brittany Saturday night. I not sure I’m able to express how truly grateful my family is to all who participated in this event. I knew there were a lot of people who cared about Brittany, but to have them all in one location had to be a sight worth seeing. We feel so bad that we were unable to be there, we had tried to get Brittany a pass from the hospital until we realized that she had to have emergency surgery that same afternoon. THANK YOU to all of the wonderful people of Northdale and students and faculty at Claywell, we feel so privileged to be part of this community and school district.

I’d like to thank everyone who has been keeping up with Brittany and signing her guest book, it means so much to us that she has all this love and support from all over the world. As a parent I find myself deeply moved every time I read an entry from someone who wishes my daughter well. This restores your faith in mankind; people do genuinely care about each other.

I want to thank all our family and friends who spent their time in the waiting room with us during Brittany’s surgery. It helped us pass the time and gave us the support we needed to get through yet another surgery.

There is so much more to write, but I have to get back to the hospital, so I’ll stop here.
Brian

Friday, March 14, 2003 2:45 PM CST

Our worst fears were confirmed today. Brittany has another tumor that is pressing on the spinal cord. They are in the process of transporting her to All Children’s Hospital in St. Pete to due surgery in the morning. I’m not in the right state of mind to be able to write any more at this time.

Brian

Thursday, March 13, 2003 9:03 AM CST

Nothing to report as far as results of Brittany’s scans yet. One of the doctors looked at them yesterday and decided he wasn’t sure what they showed. Were still waiting for other doctors to look at them and give us their interpretation. There is no comfort in not knowing, just tell us one way or the other so we can figure out what our game plan will be.

Brittany was pretty comfortable most of the day, and then after the dinner hour it seemed to get increasingly worse for pain. It seems the medication works until late in the day and then it just can’t cut it after that. They had to bump her dose up to get her even a little comfortable. She seems to get real anxious later in the day which doesn’t help very much.

There have been plenty of visitors throughout the day to keep her occupied; she even had a visit from Glenwood Sherry and some of the other Rough Riders. They really perked her up as they “beaded” her room. I posted a picture of Brittany with them. What a great bunch of individuals, so much of their time is given to help children.

Again as soon as we hear something we’ll try to update this page.

Brian

Wednesday, March 12, 2003 2:19 PM CST

Yesterday the MRI was done on Brittany. We have been waiting for the results since then. Dr Letson who is Brittany’s orthopedic oncologist at Moffitt is in surgery today, but as soon as he gets a break he will be over to read them with Dr. Veronis who is the neurosurgeon at Moffitt. The films were read by a radiation oncologist at University Community and he said there was definitely a restriction of the spinal cord.

Again, we are at the mercy of the doctors; it’s hard to wait when there is so much at stake. I know that they have other patients who deserve just as much attention as Brittany does, but it’s hard when you’re in this limbo state.

The steroids that they put Brittany on to relieve the swelling and thus reduce the pain have made a huge difference, she is able to move her feet around more and even stand up.
If they can keep her comfortable until they figure out their next move, it makes life much easier.

Today she has had a pretty good day so far, she has a good appetite and has been in good sprits. The time really creeps by slowly when you lay in bed staring at the same four walls day after day. Of course the flood of doctors that come in all day really start to annoy her, they don’t know her, so they ask all the same questions that we’ve been answering for the past two years. As soon as one leaves another one comes in and we start all over.

As soon as we find out any of the results, I’ll try to update this web page.

Brian

Monday, March 10, 2003 10:14 PM CST

As I sit here trying to find words to describe my feelings, I find it impossible. The devastation is total, I feel like something is inside eating me alive. Once again Brittany is on the verge of a life and death struggle, the cancer appears to be back. We were told today that their pretty sure that it has returned. We have some tests to go through to verify this, but it doesn’t look good. There is a slim possibility that it may be some swelling caused by the hardware and radiation in her neck, but they don’t sound to optimistic.

The MRI they do Tuesday will give them a comparison film to match up with the one they did two weeks ago. They seem to feel that it’s in the same area as the previous tumor which makes surgery very hard to undertake. There is a large blind spot where all the hardware is which makes it very difficult to interpret any scans, so they would be going in blind should they decide that this is the right course to pursue.

Every time Brittany has had pain, she seems to know exactly what the problem is. She has been right every single time and yet no one seems to value her opinion. She knows that the MRI of her head came back clear, but she has no knowledge of this yet. How do you look into the face of a beautiful little girl who has endured so much and tell her we have to start all over again? How do we do it all over again? Will she believe us when we tell her that we can beat this to? There will be so many questions, and we don’t have any of the answers.

Please keep praying for Brittany

Brian

Monday, March 10, 2003 5:38 AM CST

Brittany never made the hockey game on Sunday night. About two in the afternoon she started screaming in pain, and her legs got even worse. We made a call to Dr. Barbosa, Brittany’s oncologist and he wanted her admitted to the hospital right away. He wanted us out in St. Pete at All Children’s, but with her radiation every day we had to go to University Community. We got her there about three, and they admitted her to the intensive care unit right away. It took about two hours before they got her felling comfortable.

The doctor over there examined her and said he was very concerned about her legs. He said there could be several different reasons why she was having these problems, but wanted a neurologist to see her Monday morning. They need to get a grip on this very soon, or were going to take her to the Mayo Clinic or Shands. We don’t feel that we can let this go unresolved for very long.

Brittany is terrified that the cancer has spread to some other location. I just pray that this isn’t the case and it’s a pinched nerve or some other equally simple fix. I guess only time will tell us the answers were looking for.

I’ll leave the phone number here, so anyone who was looking to get in touch with her can call her there. It’s 813-615-7200 ex. 536261. Please keep praying for her as she once again struggles to beat some unknown force that has chosen to make her life a living hell.

Brian

Sunday, March 9, 2003 9:57 AM CST

Saturday was a pretty rough day for Brittany. She got a very late start because she was up late Friday night. Some of the mothers form the cancer canter went out for the night, and Brittany got to see Christina Gates, and her sister. Christina goes to the same hospital as Brittany, so they had a fun evening playing games, watching TV, and doing their makeup.

Brittany still is not able to walk; I had to move her every time they wanted to go into a different room. She can’t even go into a wheelchair around the house because she can’t move it with one arm. We also live in a tri-level house so every room is on a different level. We had discussed putting her into the hospital on Friday, but we wanted to give her one more weekend at home to see if she improved. Here it is Sunday morning and we see no improvement at all, in fact it may even be a little worse.

She does not want to go to the hospital, and we can’t blame her. Every time we go for a three day stay, two weeks later were still there. There always seems to be complications that keep us there longer than anticipated. It’s hard to have to sit in a room that you’ve spent so much time in for the last two years. On her original round of chemo we spent three weeks of every month in the hospital, and we did this for over a year.

Tonight, depending on how Brittany feels, were going to go to the hockey game with the whole group from the cancer center and camp Good Days. These two organizations do so much for the children with cancer. All the tickets they receive are donated to them from various foundations and businesses. It’s a way to get out of the house and for two or three house and not have to think about anything but the game. Distractions are very much appreciated when you deal with this disease 24/7.

Friday, March 7, 2003 5:20 PM CST

We made it last night to the Children’s Cancer Center. Brittany started out the evening feeling pretty rotten, but by the end of the night she did not want to leave. She had the opportunity to see all of her friends, and had some time just to chill out and color. Over all it was a very good night for her.

A lot of the wonderful people who sign Brittany’s guest book have never had the opportunity to meet her. She is a wonderful caring individual who continues to amaze us every single day. I wish we could take credit for the type of individual that she has turned into, but sometimes God just puts an angel in with the rest of us to inspire us and keep us in check. It has been, and continues to be an honor to be the parents of such a beautiful and intelligent little girl. I wish all who have come to know Brittany through these journal entries will have the opportunity to meet her one day.

This morning we got a call from Brittany’s school and they wanted her to come in and take the fifth grade pictures with her class. The time had to be changed to accommodate her radiation schedule, but they were willing to do it. She has missed so much school this year, even with her dual enrollment (in school and homebound). It’s hard to make school a priority with all the other things going on in her life. Her teacher Mr. MacDonald volunteered to be her home bound teacher so she would be able to keep up with her class. He is a very warm and inspiring teacher who truly cares about every one of his students. The school that Brittany attends has been great about working with us; this includes everyone there from the principal to all the students. All Brittany’s former teachers keep in touch with her and have been a great comfort to us all. We here about all the problems other schools have caused parents of sick children and thank God for Claywell Elementary.

After school Brittany had some visitors from school. Mrs. Sadler who was Brittany’s second grade teacher, Mrs. Dupree who was in the class next to her and Ms. Nugent who is Brittany’s guidance counselor. It was good to see them; Brittany had an opportunity to show off some pictures from her ski trip to Wisconsin.

We also had lunch with Chris Becker’s parents; Chris is on of Brittany’s friends from the hospital. Chris was not able to come because he started to go to school recently. A friend of Pat Becker and Patty’s from work was also there to spend time with Brittany. His name is Les Davidson, and he comes to visit with Brittany once in awhile when she gets radiation.

That’s all I have for today.
Brian

Thursday, March 6, 2003 2:11 PM CST

First I’d like to start off by thanking all of you that visit Brittany’s web page and sign her guest book. It means a lot to her and to us to see how many people care and are praying for her. Please continue to keep her in your prayers; we need all the help we can get!!!

Yesterday was possibly a little better, but that just might be wishful thinking. We are trying a different dose of one of her medications that may be contributing to her weakness and her inability to walk, but it hasn’t made all that much difference. She is starting to get frustrated and scared. The last time she had a problem with nerves and muscles in her hand, she lost some significant use and it hasn’t returned as of yet. With any luck though this will get better and there will be no lasting effects.

Today does not seem to be any better. I had to carry Brittany down the stairs at home. When we got to the hospital for radiation she had to use the wheelchair and had a very difficult time transferring to the table. Trying to get her back into the van was very hard for her, she wanted to do it herself but she collapsed trying to get in. I had to pick her up and get her in and then she started crying out of pure frustration. Tomorrow is the day that she will either show a vast improvement or she will have to be admitted into the hospital for further testing. I hope the doctors agree with us on this.

Tonight they have the meeting at the Childrens Cancer Center and Brittany wants to go. I don’t know if this is a good idea, she will have to stay in the wheelchair and not be able to run around with the other girls. This could be very depressing for her. I told Patty to go and I would stay home with Brittany, but she wants me to go too. Brittany looks forward to playing with all the girls, and really enjoys the time away from the house. So once again I was out voted two to one.

That’s all I have for today, again a very heart filled thanks to all who keep up with Brittany during her ups and sometimes her downs.

Brian

Wednesday, March 5, 2003 8:51 AM CST

Yet again Brittany had a pretty rough day. She continues to have more and more problems with standing and walking. She has fallen numerous times now, and we are very concerned. We have talked to the doctors, and the pain team over at All Children’s and they feel it might be one of the medications that she is on. We are attempting to reduce the amount of one on the meds that they feel may be the contributing factor. But once again were flying in the dark.

What ever happened to my little girl who only would need an aspirin if she had an ache or fell down outside? I long for the days of simplicity and monotony when there were no chemo drugs, no radiation, no hospital stays, no doctor visits, and no lab tests. I wake up sometimes and think it’s all a bad dream until I go into Brittany’s room and see her lying there with no arm and a bald head. I can’t believe that this is what has happened to my little girl. I can’t believe that this is what God intended her to endure. Most days I seem to handle this reasonable well, but sometimes I catch a glimpse of her and I fall apart. I’m the dad, I’m supposed to protect my baby, and I’m supposed to make everything better. When she looks into my face for answers, I don’t have any!!! All I can say to Brittany sometimes is that this isn’t fair and we have to be strong and do whatever it takes to beat this. I just hope that that’s enough to get us by.

Brian

Monday, March 3, 2003 2:57 PM CST

Brittany had a pretty rough day today. It started out as usual at the hospital for her radiation. We talked to the doctor today, every Monday he will see us. He feels everything is going pretty good. He feels her plan came out better than expected, as far as avoiding the spinal cord. They can get the results they hoped for, without endangering the cord. She actually gets hit with seven different beams of radiation. They overlap on the tumor site and about two centimeters around it.

We talked with him about the problems with her not being able to swallow and he said they are a little concerned that is started so quickly. Again he said they may have to give her a break if it gets to bad. They also were able to get all the radiation in just over six weeks. They feel with the amount she is being hit with the side effects would be the same even if the extended out another few weeks, so why not get it done in the shortest amount of time. Once all the radiation is complete she will take about three weeks to stop feeling the effects.

After we left the hospital we had to stop at the clinic in Tampa, when we were leaving Brittany’s legs gave out and she fell in the parking lot. This seems to be happening a lot the past few days. Again were assuming that this is caused by the amount of medication she is taking. The Radiating doctor agreed with us, but we need to talk to her oncologist to make sure. We hope that it’s as simple as tapering of the medication when all the pain decreases.

Brittany remains in great sprits and continues to plug along without to much resistance. She is however moody from the narcotics. She is a remarkable young lady and makes me proud to be seen with her whenever we are out. She continues to impress all who come in contact with her. She has never been afraid to go out, and all the looks and stares don’t even faze her. Sometimes I feel like I have to say something, but usually we end up just walking away. People need not pity her, but admire her for her courage and strength. So many people could learn so much by talking with these kids. Cancer stinks, but it has afforded us the opportunity to meet so many wonderful families who all unfortunaly have to share this common bond.
So I guess you could say one good thing has come from all of this.

Brian

Sunday, March 2, 2003 7:25 PM CST

Brittany had a great day today; there was very little pain until late in the day. I hope that this is a good sign. She is still having problems with her legs giving out on her. This usually happens when she tries to get into the van or has to step up a curb. We assume that this is a side effect of the narcotics she’s on. We also assume that when she tapers of the meds this will get better.

Last night we went to Patty’s brother’s house in Largo. He lives real close to where Emily Lester lives. Brittany went over to play with Emily and her sister Kitty. Brittany wanted to go to teen night, but this month they were going bowling. With all that we’ve been through the last few weeks, this was not the activity that Brittany needed to go to. Of course she was mad that we would not let her go. So at least playing with the Lester’s got her out of the house and occupied her for awhile, and she had a good time.

We ended up getting home around 2:30 in the morning and Brittany was so wound up that she would not go to sleep until an hour later. Then she wanted to sleep all day, but this was not going to happen so after much persuasion, Brittany was up and ready for what was left of the day. The day seems a lot longer without having to sit at the doctor’s everyday waiting for her radiation. But of course were back to that tomorrow.

She is already starting to feel the effects of the radiation, even though they told us it probably would not happen until about the third week. We talked to the doctor, and he said that with the damage that had been done to her esophagus from the chemo already was most likely the reason the effects were beginning so soon. At this rate what will she feel like in two more weeks? She can barely swallow now. They said that they might have to give her a break in the middle if it get to bad, or they may even have to put a tube into her stomach to feed her. I guess we have to deal with this as it comes.

Brian

Friday, February 28, 2003 3:39 PM CST

Brittany had a great time last night at the hockey game. She got to see a couple of fights, and the Lightning even won. She felt pretty good all night with very minimal pain. I hope we turned the corner with this.

Today she started off with her radiation. When we got to the hospital there was a problem with the machine, so we had to wait about an hour to get in. After that she had an appointment at the clinic to get deaccessed, this is always a problem for Brittany because the tape tears her body up. She usually has to pull off the tape herself, and this takes awhile. Finally we were out of there and free for the weekend.

The rest of the day Brittany is going to take it easy. She tends to overdue it if she feels good. I can’t blame her; she just hates to miss too much and tries to make up for lost time. If she continues to feel good through the weekend were going to take her to the strawberry festival in Plant City. This is similar to the state fair just on a smaller scale. Hopefully the rain will hold out until after this.

That’s it for now
Brian

Thursday, February 27, 2003 12:33 AM CST

We got the results of the bone scan back, and everything was clear. I guess that’s good news, but that still leaves us with a lot of unanswered questions. It’s really amazing how this whole process works. First you have the original problem, then you go in for the tests, then you wait for the tests to be read. After this you confer with all the different doctors and listen to what they have to say. Then you seem to be right back where you started, without knowing anything and usually having more questions. All these great minds that you put your faith in, and most of the time all you end up with is disappointments. Don’t get me wrong, the doctors have been great about getting Brittany where she is right now, but there still seems to be huge gaps in what they have been able to tell us about all these “side effects”.

Brittany had a pretty good day yesterday, she started out with very minimal pain (thank you pain meds), and this gave us a very false sense of security. As the day went on she became more and more uncomfortable unlit she started screaming in pain. We thought we were going to have to take her to the hospital, but after increasing her meds and sitting with her for about two hours she finally calmed down. After that she was afraid to move because it would start hurting again. What a way to have to live!!

Today were going to try to keep her a little more medicated so she will be able to move around, hopefully with very little pain. We had plans to go to the school this morning where Brittany was going to do an interview with her class for channel 13. But when she woke up this morning she was just not up to it. Patty talked to Cicely Wilson from the TV station and they want to reschedule for next week some time.

Tonight if Brittany feels up to it were going to go to the hockey game. She likes to get out usually at night because she’s been cooped up most of the day. Also, she really enjoys the hockey because you never know when there might be a fight. She says that the fights are the best part.

Brittany has missed most of the school year. She started out going everyday and then she relapsed. Then her teacher volunteered to be her homebound teacher, and after only meeting with him a few times Brittany again started having problems with chemo and other things. Now dealing with all this pain and meds she can’t even focus enough to read anything. The problem with her hand where she can’t hold anything is getting a little better, but not enough to actually pick up anything or hold a pencil to write with yet. So once again this monstrous disease has been able to creep into every aspect of her life. I guess when you deal with a disease like this, you get used to living life one minute at a time, and being thankful for every victory no matter how small.

Wednesday, February 26, 2003 7:52 AM CST

Another day of testing done, so now we play the waiting game. The day started out like all of our days seem to with Brittany in pain. She woke up and couldn’t move without it hurting. We pumped her up with all the pain meds we could, and after about an hour she was able to get up. Then it was on to radiation. She has a very hard time trying to get down in the right position for this because she has to lie down on the hard table and of course this hurts her back. Once she’s down and settled in she does really well, and stays still. God knows how she does this with all that pain, fifteen minutes later she’s done and able to get off that table.

After we left the hospital we stopped to visit with our friends over at Trans World Skip, Denise, Natalie and Peggy from Camp Good Days. It was good to see them,they have all done so much for Brittany and our family. Brittany was able to play with a dog they adopted named Max. She really enjoys times like this where she is able just to visit and enjoy the company of others.

After we left Trans World we headed out to All Children’s Hospital for her Bone Scan. First we had to get her injection with the contrast, and then we would have three hours to kill before the scan would actually start. While Patty had Brittany up in nuclear medicine, I got her prescription filled for the Toradal. We gave her a dose of this right away to try to get her comfortable for the long stint on the table. We took her out to lunch at a little deli in downtown St. Pete. The medication snowed her so bad that she couldn’t keep her eyes open and kept falling asleep sitting up in the stool.

Finally scan time crept up, and we got her all positioned on the table where she promptly fell asleep and stayed that way until the scans were done. The only problem was that the medication causes involuntary twitching, so Susan in Nuclear Medicine and myself had to hold down the different parts of her body that were getting scanned. While I stayed with Brittany, Patty went accross the street to the doctors office and waited there until one of the docs read Brittany's last MRI. The news was great, they saw no sign of tumor growth, or fractures. Great news, but no help determining her increase in pain. As usual we'll take the MRI and bone scan to Dr.Letson,her Orthopedic surgeon at Moffit, so he can confirm the reading.

I just want to say that with all we have been through, sometimes you loose faith in mankind. Then you run into exceptional people who restore this lost faith. We have been truly blessed, because we have been lucky enough to have met a multitude of individuals who truly qualify as exceptional people. We may not always be in the right frame of mind to say it but we truly love all of you and appreciate every thing that has been done for Brittany and our family. I just hope that some day we will be able to repay all of the love and kindness that has been shown to our family. Excuse the rambling, somtimes it's hard to get in print all we go through and feel.

Brian

Tuesday, February 25, 2003 7:16 AM CST

Once again it was another long grueling day at the hospital getting scans. Brittany had her radiation treatment at 11:15 and we had to head over to All Children’s for her MRI. Before we actually went to the hospital we stopped at the clinic in Tampa to get Brittany accessed. While we were there they gave her an injection of Toradal, and that seemed to knock the pain down to a more tolerable level.

Brittany’s appointment was for 4:30 but they told us that if we could get out there early they would get her done earlier. Once again this was not the case, and we sat out here longer waiting for her scheduled appointment time. When she got on the table it still took over two hours to get the MRI done. We looked at the scans on the computer with the tech, but with all the hardware in Brittany’s back it almost impossible to tell what we were looking at. So now we have to wait for the doctor to find time to look at these and call us with the results. And today we have to do it all again because they ordered a full body Bone Scan.

Today as soon as the clinic opens we are going to call and see if the can give Brittany another injection of the Toradal to get her through another long day of testing. If the pain does not get any better soon she will have to go into the hospital so they can control it better. If this happens we have to go to either Moffitt or University Community because she has to continue with the radiation ever day. If she goes to Moffitt the will have to transport her every day. Well that's it for now.

Brian

Sunday, February 23, 2003 10:16 AM CST

It's been a very tough few days for Brittany. She has been in awful pain and it does not seem to be getting any better. The doctors want to wait and see what happens, and if it continues they will run more scans. We decided that this was not the approach we wanted to take, so the scans will be either Monday or Tuesday.

We took Brittany to the home show Saturday to see Glenwood Sherry. He's the gentleman who painted the beautiful picture of the everglades scene. She was ok for about half an hour and then the pain kicked up again and we had to leave. We felt so bad because Glen had put so much time and effort into this painting. When she gets like this it's impossible for her to sit up or stand, she has to lie down to try to relieve to pressure on her back.

We put her back on pain medication last week, and after talking with the doctor, they increased the dosage to double what she had been on. This still does not seem to keep the pain in check. After all this kid has gone through I can's believe that she still has to deal with this pain.

It's hard to believe in anything or anyone anymore when you watch what this crappy disease does to one of your children. I watch Brittany every day of her life fight just to do the "normal" things all the other kids take for granted. When all of this started, we told Brittany that there would be very few things that she would not be able to do, and she has proven us right. I just wish that with all she has been through she would get a break once in awhile. She deserves it.

Take care
Brian

Thursday, February 20, 2003 7:50 AM CST

Yesterday went pretty smooth as far as the radiation goes. Brittany is still having alot of pain in her back and arm. We talked to her doctor yesterday and he feels that it's do to overuse. I don't know if we agree with him. If it continues to hurt or get any worse, I think we have to admit her to the hospital and see if they can find the reason this is happening.

As for the radiation, it was pretty hard for Brittany to lay there without moving at all. It takes about 10 minutes to get her set up, and another 15 to actually radiate her. It's hard to believe that she has to do this everyday for the next 8 to 10 weeks.

They built a mold of her body so that she will lay exactly the same every time. They also made a mask that fits over her entire head and claps to the table so she is not able to move at all. It's very scary to have to watch them put her on the table and set her up like this. I just pray that we are doing what needs to be done to beat this cancer.

Again we ask that everyone keeps praying for Brittany, and all of her friends who are also dealing with this hellish disease.

Wednesday, February 19, 2003 9:03 AM CST

Brittany has been back a couple of days and is still tired. She had a great time and already misses all the new friends she made. She did really well skiing and really enjoyed it. She also went dog sledding and snowmobiling. She was not able to go cross country skiing, so Jerry Wunsch took her snow shoeing through the woods. It's hard to believe that it's all over already. Now it's back to treatment for Brittany.

Today she starts her radiation treatment. She is afraid that she will experiance all the rough side affects that come with this treatment. And knowing Brittany she is most likely right. We'll try to keep this updated as much as possible from now on.

Brian

Thursday, February 13, 2003 10:24 AM CST

Brittany left for Wisconsin early Wednesday morning. She was so excited when we dropped her off on Tuesday night. She is going up there with her friends Emily, Molly, and Chelsea. They are going to have a blast. We are so grateful to Jerry Wunsch and the Children’s Cancer Center for making this trip available to all the girls.

We heard from Brittany last night. She was so excited that she could hardly tell Patty what they had been doing.
She said that it wasn't that cold, but the live cam up at the packer stadium said it was -30 with the wind-chill factor.

Today they have a full day planned starting off with downhill skiing and ending up with an old fashioned sleigh ride and campfire. I hope she has the best time of her life and brings back memories that will last forever. We hope she takes plenty of pictures, we sent 5 disposable cameras with her.

We found out yesterday that Brittany would be having her radiation treatment right here in Tampa. After 4 months of preparing for a trip to Boston we were told that she did not meet their criteria. So after the panic attack was over we were on the phone to California which is the only other center in the country that does Proton radiation. We were rejected there also.

Finally after talking to many doctors and getting some help from friends at Transworld, we were able to talk to the doctor that actually sets up and trains the doctors in these specialized radiation clinics. He spoke with the doctors up in Boston and finally came to the conclusion that the best type of radiation for Brittany was IMRT (Intensity Modulated Radiation Therapy). This would consist of between 7 and 9 beams of radiation that penetrated her body at different locations and intersected at the site of the tumor. She will have to endure this treatment for 7 to 8 weeks.

They have to be very careful because the tumor was right on the spinal cord and if this get to much radiation there could be severe problems. The doctor that will actually be giving her these treatments was a nuclear scientist before becoming a doctor. He then started the Sarcoma program at Moffitt with Dr. Letson, who is Brittany's surgeon. We pray we are making all the right decisions.

Take care and please continue to pray for all of these children that have to endure this horrable desease.

Brian

Brittany’s had several good days since she came home from the hospital. She had a great time in the Children’s Gasparilla Parade with her friends Molly and Chelsea. Her pain is still tolerable and her blood work on Monday looked terrific. Tuesday she met with her teacher, Mr. MacDonald and had a visit from her friend Carly. Tomorrow we go to Channel 8 for an interview that will be aired on the show Daytime, Thursday @ 10:00 AM, she is very excited. Looks like the gang may be going to the Lightening game on Thursday; hopefully everyone will be up to going.

Tuesday, January 28, 2003 at 06:29 PM (CST)

Friday, January 24, 2003 at 05:31 PM (CST)

Brittany came home from the hospital Wednesday night. Her fever is gone and her pain is bearable. After several tests the cause of the pain was chalked up to one of her chemo drugs that effects the nervous system. Since her nerve roots were crushed when she broke her neck that is her weak spot. She is slowly getting back the use of her arm. Look for her in the Gasparilla Parade tommorrow with the other Dream teens on the Childrens Cancer Center float.

Saturday, January 18, 2003 at 03:54 PM (CST)

Brittany’s chemo went pretty well January 6th – 12th. She was happy to come home on the 12th, but it was short lived. Monday she had her routine blood work and Tuesday she had her port re-accessed, then met with her homebound teacher for a couple of hours. She was so excited to be well enough to do her school work and feel normal, she was truly glowing. After such an aggressive round of chemo she cherishes every day she feels good before her counts bottom out, which they did on Wednesday. She couldn’t get out of bed and had severe pain in her back and arm. She was running her typical low grade fever that unfortunately went up to 103 degrees, so it was back to the hospital by about 11:00pm.
We have been at ACH for 3 days now and so far no source of infection has been identified for sure. One of her port cultures did grow the second day but the infectious disease Dr. thinks since both ports did not grow (she has two connected ports) the sample was most likely contaminated by outside sources.
We are most concerned with her pain in her arm. She is suffering pretty bad, she has lost most of the strength and function of her hand and is back on the Dilaudid (synthetic morphine) pump that she lived with for so many horrible months. She gets so itchy from the Dilaudid she refuses to use the button, she would rather have pain then itch and still have some pain.
She had an MRI of her neck and arm; thankfully no new tumors are seen that could be causing her pain and loss of hand function. Her films will be taken to Moffitt for her Neurosurgeon to review and give us his opinion on the cause of her pain, which at this point seems to be from one of her chemo drugs that can cause nerve pain. I can tell she is understandably terrified, she is so frustrated with the lack of function in her only hand and the thought of living in pain again. I have to believe the pain is temporary because anything else would be unbearably cruel. I’ll update in a few days. Take care.

Patty

Thursday, January 02, 2003 at 08:42 PM (CST)

Hope everyone enjoyed the holidays. We were very thankful to be home and with family. We are very grateful to the generous people who helped make this holiday season very special.

Brittany has been enjoying the last couple of weeks with her brothers while they are on winter break and playing with our cats and dogs. She goes to clinic tomorrow for blood work and the hospital on Monday for 5 days of chemo. I'll up date in a few days.

Patty

Saturday, December 21, 2002 at 02:16 PM (CST)

We just got home from the hospital yesterday after 5 days. She went in 12-6-02 for a week of chemo. We were home one day when she ran a fever, so we went back for another week. Her cultures were negative, her cough persist from her asthma but she feels pretty good otherwise. Have a great holiday.

Click here to go back to the main page.

----End of History----