History

Journal History

Monday, January 19, 2004 7:26 PM CST

Happy New Year!

So far this new year has brought us great happiness. On December 11, 2003 we welcomed our new baby girl Serenity Electra into our family. She has been such a joy. She is very sweet and looks just like her big brother Seth. We are really enjoying the new baby and the love that a new baby can bring to your family. We know that Trinity would be proud of her baby sister.

Since the baby arrived we have been very busy. We went to Alabama for Christmas and celebrated the holiday with Sean's family. Then we flew back to Seattle where we stayed only a few days and packed up for the drive back to
California. We transfered Seth back to the school he was orginally enrolled in so he has his same teacher and friends. We have no idea how long we will be here but we are hoping that he will do just fine. He is adjusting pretty good so far. I am sure that the moving is hard on him but it is better to stay together than us trying to be a family so far apart.

To all our friends and family, thank you for being there for us and all the wonderful gifts for baby Serenity. I am going to add a photo of her on here for all to see so please check them and sign the guest book if you have a minute. Hope your all doing well!

Love Sean Tracy Seth Angel Trinity and baby Serenity

Wednesday, November 19, 2003 11:09 AM CST

Here I am again apologizing for taking so long to update this webpage. I find it hard to write about the daily issues we are going through. It seems that it is much easier for me to write about just Trinity than it is to say what is happening with us. But I will try and tell a little of what has been going on with us.

Seth started Kindergarten in California this past Sept. and seems to really enjoy it. He likes the kids and all the activities. Mostly play time! He is such a high energy child, much like his mom I'm sure. It is now Nov. and we have come back home (Seth and Mom) and he is enrolled in school here in Snohomish. He is really enjoying his new class and the teacher. She is a very kind young teacher and seems to really be interested in the children. I know for Seth that makes a big difference in how he has been acting. He even gets to ride the school bus which he really likes. I of course am trying to get used to the idea of him on there. The first day I was a little nervous, then the second day actually putting him on there in the morning I cried so hard. He seemed so small to be going to school and riding a big huge bus. The kids in the morning are all aged Elementary kids and so he looks so tiny with all of them on there. I was crying and of course he just smiled so sweetly and waved goodbye! What a big boy! It is getting much easier as each day passes but the first few days I thought, he better just stay home with me. He is too young for school and I need him home with me. Selfish thinking I'm sure! I feel like I am entitled to a little selfishness now and then when it comes to him.

So now that we are settled back in our new house and trying to get to a regular schedule it goes and snows on us. Too funny, they closed Kindergarten today. What a switch from California life. Sean is still there working and will return home soon for the baby's birth. Her name will be Serenity Electra for those of you that don't know. She is due to arrive on Dec. 12th so only time will tell now when her birthdate will actually be.

It is getting so close and I am getting pretty nervous. I am worried about just about everything. I think of how I will feel and it worries me so I try and just not dwell on things too much. The thought of holding her in my arms is so exciting yet very sad at the same time. I am sure many may think sad? why? Well after all that we have been through and the loss of Trinity this new baby brings so many new emotions and I am so consumed with being a good mom and doing everything possible again to make sure she is happy and healthy. The pressure at times is so overwhelming. I just pray daily that she is strong and healthy, the happiness I am sure will be there.

I finally went to visit Trinity's grave a few days ago. It was the first time I have been there since this summer before we went back to California. It was so hard. I went into the office to make sure our address was updated and they gave me the deed to her site. As soon as I walked out of there I was a total mess. Oh I hate that place! The cemetary is beautiful but for some reason right now I feel so angry and upset when I go there. It just tears my heart out each and every time. Like a huge hole again and again. Why does it always hurt so darn bad? I hadn't even seen her stone yet and I was upset. I went to the grave and just sat and cried. I try and tell her what is happening in our lives but feel so strange as if she is already with me and I don't need to tell her. So many people talk to their loved ones, I feel as though I am odd for not being able to and feeling that she is still close at all times. I suppose it all goes with ones beliefs or just a gut feeling they get. I carry Trinity in my heart every day and doing so makes me feel so close to her as if she is here and I just can't see her. It doesn't make it better to know that I can't see or touch her but it does make it easier on my heart to know that she is safe with me all the time. I hope that doesn't sound too odd, it is just how I feel.

With the days getting closer to her anniversary I feel more and more pain. I miss her desperately and want her to be here enjoying this new baby so much. I pray that she will watch over her brother and new sister and know that they love and will miss her forever! The thought of having another daughter is so wonderful yet very painful. Many have said that we are having a new baby and that this will help ease the pain and loss of Trinity, not true. I only have hope that this will bring some love back to our family. That Serenity will show us how to love and play together again. That with the love of Trinity leading the way for us we will be a stronger family. I know she would want only happiness for us. She was forever a happy baby!

I will try and write more and update when the baby arrives. Please have a safe and happy Thanksgiving and if you have snow, enjoy it!

Much love,
Tracy Sean Seth angel Trinity and baby Serenity on the way!

Saturday, September 6, 2003 3:45 PM CDT

It has been so long since I have updated this page. I am very sorry for that. We have been very busy lately. We went back to Washington state and bought a new house moved in and then moved back here to California. We did not even have time to settle in and enjoy ourselves. We are scheduled to be here in California until this job is over so it looks like the baby will be born here in California. We are doing as well as can be expected. We would really love to have a consistent place to hang our hats but sometimes that doesn't happen for people and we know that. Sean's job keeps us always wondering what will happen next.

My mom is planning another dinner to raise money for childhood cancer in honor of Trinity. I am really proud of her for doing this, I know it is very hard for her. She has been crying alot while getting things ready and I wish I was there to help her. She is really doing a great thing.

The new baby is developing just fine and is due on Dec. 11th or 12th. Her name will be Serenity. I think that anyone that knows us would agree that we need some peace in our family. She will most likely be totally the opposite of that though, if she is like her siblings. Trinity was a very sweet baby but when she got a little bigger she started to get more interested in getting into trouble. I just loved chasing her and watching her make things crazy for us. Seth on the other hand was difficult from birth. He cried a bit more than I thought he should and has been a challenge for me all along. He is a sweet boy and I love him dearly but sometimes he is hard for me to get him to follow my instructions. I think that is pretty normal for little boys so I am not too worried.

I have had a few friends lose their little girls to cancer recently. One was to Wilm's tumor and the other was to Neuroblastoma. It is just so sad that so many children are dying. Why can't they stop this horrible disease? I suppose we might not ever know.

Other than the usual things we are doing well. I will update again soon.

Tracy mom to angel Trinity Luna

Wednesday, July 2, 2003 3:35 PM CDT

Hello all, it has been a while since I wrote last. We are leaving California today and driving to Seattle for a job that Sean will be doing there at Children's Hospital. It seems unfair that he will be there when he was away so much during Trinity's treatments there but that is life, never fair! We are going to try and make the best of things and hopefully also find a house somewhere in the Seattle area. We should only be there for a few months and then we will be returning to California to finish out the job that he has been working on for the last year and a half. Hopefully we will be back in time for Seth to start Kindergarten. He is really looking forward to going to a new school and being all grown up. They grow too fast that is for sure. The pregnancy is going well although I am still very sick somedays. I am nearly 17 weeks and I am still waiting for the day that I wake up and feel really good. Hum... I wonder if that will happen?

I will update again while we are in Seattle and post the sex of the new baby just as soon as we find out. Thanks for stopping by and please remember to sign the guest book.

Love Sean Tracy Seth angel Trinity Luna and baby Rierson?

Thursday, June 5, 2003 2:31 PM CDT

We are home from Washington and doing really well. The trip home was really stressful but totally worth it. For Trinity's birthday we spent the day having a late breakfast with my mom, stepdad, grandma and my cousin Jeff. We had a nice time together and when it was over we watched home movies of both Trinity and her brother Seth. It was really nice. After the family went their own way we went to the gravesite to visit Trinity and bring her some balloons and flowers. It was very sad as it always will be. After our visit with her we went back home to watch more movies and have dinner together. Trinity was such a wonderful little girl and brought so much joy to our lives. The love that we shared with her will keep us strong through the years until we are unitied again.

On another note, I recently flew to Arizona to meet a little girl named Madison. She is 3 years old, soon to be 4 and is very sweet. Her little voice is just adorable! She also has Neuroblastoma like our little Trinity had. I had spoke to the mom a few times on the phone and we have emailed for a while but I really felt I needed to meet her in person. I am really glad that I took the time to do that, even though some might think it was not healthy for me. It was just the oposite, I had a really nice time and the family is really very lucky to have each other. They are very supportive of each other, which is the best one can ask for. I am sure my little girl wanted me to do this and I wouldn't change a thing. I wish so much for this family that their little girl will get the chance to grow up strong and healthy. I also have another friend in Seattle that has a little girl with Wilm's tumor and she was just told that she is terminal. It is so sad and I wish I could be there for them. I am hoping to be there in a few weeks and praying that it not be too late to see this little angel. She is so sweet, she just loved my little Trinity. She knew her and the laughed in the hallways at the hospital together. I am forever greatful for those memories.

Oh how things seem to make no sense at times but there is one thing that is forsure a Miracle is Life itself! There are cures and there are great things that happen for some people, but a true Miracle is Life and the time we get to spend loving each other. That is my new look on things and it is what is keeping me going.

Thanks for stopping by and checking on us, we are doing well. My pregnancy is progressing just fine and I am almost over the morning sickness. Please sign our guestbook we love the enteries!

Thanks Sean Tracy Seth and angel Trinity Luna

Thursday, May 22, 2003 4:24 PM CDT

Baby girl, in just a few days it will be your birthday. We are leaving California today and flying to Seattle for the weekend. We plan on being with you to send off some balloons to you. Your new headstone was put in just a short time ago so we will get to see that also.

It is so hard to believe that only a short time ago we held you in our arms, laughing with you and kissing you to pieces. The thought of having your birthday come and you not be here with us is so difficult to even imagine. So we will spend the day believing that you are with us in spirit. My dearest Trinity you are the sweetest little girl I have ever been around and how lucky we were to call you our own. My heart aches each day for a touch from you.

Sweetheart your Daddy, Mommy and big brother Seth will be thinking of you and missing you on your special day and always.

All our love forever,
Daddy Mommy and Seth xoxoxoxoxoxoxoxoxoxoxoxoxo

Wednesday, May 7, 2003 2:05 PM CDT

I have been so very sick and unable to update your webpage for some time sweet baby girl. I am so sorry. As you know we are having another baby and I have morning sickness all day every day. I have also been really sad. I cry alot bcause I know that your birthday is just around the corner and you should be turning 2. You should be laughing and playing with your brother and running around driving us nuts. Instead we will have to find a way to remeber you on your special day without you. I miss you so bad and each day proves to be more of the same. Tears and saddness. Your brother Seth is very worried about this new baby, he thinks this baby will die because you did. Daddy is so good and told him that not all babies die. I so wish none of us had to experience this loss but most importantly I wish that Seth did not have to think or worry about the pain and loss of having a sibling die. This sweet boy has the right to have a normal childhood with lots of love and joy. We wish for him to have a sibling to run and play with. Seth loves children and loved his sister so much. As did all of us. I wish you could come home again baby girl, but as we all know you won't live in the flesh again. Forever your in our hearts. Mother's Day is right around the corner and I am not looking forward to the day. Know that you will always be with me baby girl. I love you always and forever. Mommy

Thursday, April 10, 2003 12:10 AM CDT

Monday April 7th I went to the doctor and found out that we are due to have a baby in December! It's due date is either December 11th or 12th. It is just amazing! What a wonderful day! We are very excited for this new chapter in our life. Of course we are still a little nervous but we are confident that everything will workout just fine. Until then it is lots of rest and relaxing for me!

Seth is a little worried about having a new brother or sister, he says he wants his Trinity back. He is such a sweet boy! We just talked for a while and told him that we want her back too but that she can't come back. He watched some video clips of her on the computer and saw some photos which seemed to help him. He said to me this past weekend that he wanted to tell people about his sister Trinity and how she had cancer. What a great kid! It is amazing how these children respond. I am so proud of him!

We know our little girl is with us always, thank you baby Trinity! Mommy, Daddy and Seth love you very much! Your always in our hearts and prayers.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

All our love,
mommy and daddy!

Wednesday, April 2, 2003 4:56 PM CST

Today has been a rough one. As if most days are not like that as well. Each day presents a new battle for us. This weekend Sean is going to be with his family and once again I will feel totally alone. It will only be for a few days but I am so afraid of the time alone anymore. I have been without him for so long and I know all too well the pain of being alone. Left to handl all that comes your way. Oh my gosh that is and was the worst thing besides having my baby leave us for good. Man the tears are just overwhelming today. I know he will only be gone for the weekend but it feels like it is going to be forever.

Well, on another note I am missing my baby so much today. She was so great and full of life. What happened? I just wonder why things like this happen to such wonderful children. They are so perfect it seems. Without these life threatening illnesses what kind of life would they have lived? I miss that Trinity won't have a future, a chance to grown up and do all the neat things that other little girls get to do. I suppose I am really feeling this way because we took Seth to Legoland this weekend. He had such a great time. He loved the roller coasters and the legos everywhere. Plus he got a sword and a sheild. I was holding back the tears all day. They always have these great little outfits for little girls to dress up in and I can just imagine her in one of them. It tears me up so badly. So although Sean Seth and myself had a really great time together it is never enough to take away the pain of losing my baby girl. Why did she have to go? I can't wait for that answer, I know we will get one some day. It is just going to take a long time for that answer.

Thanks for all your comments on her guest book. The words are so kind. Thanks also for checking back to see how we are doing.

Much love,
Tracy and boys

Trinity we miss you and love you very much! Tears..... xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

Thursday, March 20, 2003 9:58 PM CST

Yesterday was my birthday and I spent the day before crying my eyes out thinking I would just hate the next day. I though for sure that I would be miserable. Instead it was amazing! My family really did a wonderful job of making me feel so loved. They each honored me with a special gift to remember our daughter. What a wonderful way to say that they love me. I would like to share what they did for me.

My mother in law made a shadow box of a t-shirt that we made when Trinity was dying. It had her hand prints on it with a Cancer Cannot Do poem ironed on over the handprints and her dates at the bottom. Then she added a gold ribbon pin and also put in a birthday invitation that I made for Trinity's 1st and only birthday. I am so glad that I made those. That was such a neat idea and I am very greatful for the gift.

My mom and stepdad sent me a bathrobe and slippers with moons and stars all over it. It is really warm and cozy! Plus I needed new slipper and a robe. Then my dad went and bought me a piece of blue pearl granite just like Trinity's stone and it is in the shape of a cresent moon almost and he carved a moon and an angel on it. It was made to make me feel a little closer to home. What a great bunch of ideas.

My husband and son spoiled me as usual. My husband like to do that and is very good at it. I love him for it! My son drew a heart on the cards envelope and said look mom I drew you a heart. I said it's beautiful and he said to me, it is a heart for you because you are always in my heart. What a sweet boy, only 4 1/2 years old. I sure hope he stays that way.

I had a wonderful day and there were signs of Trinity with us all day. Thank you for the signs baby girl! I miss you so much. Each day that goes by is one day closer having you in our arms again. Someday we will be together again sweet baby girl!

Thanks for visiting our website. Please sign the guest book when you come even if you already have done so.

Hugs,
Tracy

We love you Trinity!oxoxoxoxoxoxoox

Wednesday, March 12, 2003 8:57 PM CST

Hi everyone!
We just returned home from New Mexico and El Paso, TX. where Sean's grandma's funeral was. It went very nice actually. I wasn't sure what to expect attending a funeral so close to our baby girls but it wasn't bad. It was also on her 3 month anniversary and I was really worried that it would be pretty hard. We faired well though. I however spent the evening getting really drunk and crying so it must not have been that easy. I don't drink a lot and boy did I ever do some terrible damage to my body. What a terrible thing to do. I am staying away from that way of getting rid of the pain for sure, it didn't help a bit. I cried my eyes out and felt horrible that I wasn't able to get her any flowers placed on her grave that day. It was a pretty bad feeling being so far away that day. I wonder what it will be like on the 6 month anniversary. I might just have to make sure I am in Seattle for that one.

Seth is doing well, growing fast. He is so smart and really a fun kid. He keeps us laughing all the time. I suppose there is not much more to say right now. I will just add that I made it to my first Compassionate Friends meeting. It was what I thought it would be. I might try and go again, but I'm not sure. All the people there expect one other mom have been a while out after losing their children and it makes a big difference in how you can talk and relate. Plus I was the only one there with a small child. They were all adult children. It was just hard.

Thank you for visiting Trinity's page.

Mommy, Daddy and Seth miss you baby girl! XOXOXOXOX

Thursday, February 27, 2003 11:21 PM CST

Today has been a very long day for some reason. I am really tired and just can't get comfortable. I tried turning the TV off and just reading a new book I bought. It is called Healing Grief written by a Medium. I am hoping to get some good information from the new books I just bought. I am also going to attend my first Compassionate Friends meeting on March 5th. I am really hoping to get some good stuff from all of this. I really need to talk outside of the internet. I find myself getting pretty involved in my emailing people and forget that there people out there to talk to in person. Many have said that they are considerned for me so I am willing to do something to see if it can help.

Today is Brad's 50th Birthday! That is my step dad for those that don't know him. It is so wonderful that he is still here and doing well. Although he didn't need any chemotherapy had he waited much longer before going to the doctor he might not be with us right now. I am pretty happy that he understands how important going to the doctor is now. He is from the old school of thinking that you don't need to go to the doctor unless your dying. Interesting!

We are all hanging in there. Each day living without our Trinity is a new experience, not one that is worth a crap but still we are here. She was such an amazing little girl. I can just see her face smiling and dancing when I turn on the radio. It is so sad, I want to turn it off and just drive but mostly I just pretend I am not in the car. I am sure it is not a healthy way of driving, but it is my style. I see her laughing and holding her little fists together and dancing like she owned the world. She was so much fun. I cry just remembering it. The pain that one feels at a loss like this is so hard to put in to words. She blessed our lives in so many ways. Can you imagine a world without these wonderful babies? What a waste of space we would have. Why aren't they given more time, time to love and show us how to love. I still need to know how? I need to learn from her, for her. Everyday without her feels like a life of hell. Try and stay focused on how she would want me to feel, that's what I tell myself. I wonder if that is what she would really want. Would she cry if I was crying? Seth was like that as a baby, he cried everytime I would cry and he still does at 4 years old. I want to see her dancing and laughing with her friends and playing dolls and just sitting there being silly like she could do. I want her to grow up and tell us what she wants to be. I prayed for years to have a girl, I wonder why such a horrible thing can happen to just a regular girl from a small town and then I remember that it happens to people all the time all over the world. What a horrible bad dream, someone wake me up! I miss her so bad, the pain is almost numbing. How you can't even imagine in your worst dreams what you will feel like until it really happens. God wake me from this place and put my family back together. I want our baby girl and our home and our jobs and all that crap that life dealt us that felt so hard to handle at that time. The boat and the neighbors that I thought would make me nuts and all the stuff that wasn't too important and is so important now. Not that a house or a boat replaces any pain, it's a part of the normal life that people have. We are not normal, never will be again. There is nothing normal about losing your baby to a deadly illness. Why and how could such a thing happen? Someone fix this place!

Sean and I are trying our best to make sure that Seth gets all the support he needs to deal with any issues he is having. He is such sweet little boy, so full of life. He told his teacher the other day that his sister died. I cried when she said that to us today. I felt so sorry for him to have to share something so painful and to not be able to understand it. The pain this little pain must feel and not be able to express, he is only 4. I can't handle each day as a grown woman how can we get them to understand all this. We love him so much each and everyday it's for him.

We bought a Nikki Bear at the Build A Bear workshop a while ago. I finally took her wings off and started to sleep with her. We named her Luna! She is lavender and she is so pretty. She even has purple satin pj's with a moon on the pocket. This is so strange but I feel so good when I am holding her. I get a total body sensation. It is amazing! I miss you baby girl!

Update to Trinity's headstone, they should be doing a final drawing and after we sign off on it they will replace the original one. I am very anxious to see it completed. Picture and all!

All my love,
Mommy

XOXOXOXOXOXOXXO's

Monday, February 17, 2003 8:48 PM CST

Happy Valentine's Day to everyone! We went to Colorado Springs for the weekend to be with Sean's family. The Mountains there are so amazing! Wow what a neat experience.

My step dad Brad is doing well, he had his check up with the doctor and they are very hopeful that he will be just fine. Thank you for all your prayers.

It's been about 2 and a half months since our dauther passed away and we are just as lonely now if not more than the day it happened. We miss her terribly, cry and long to hold her in our arms. Their have been some things said to me lately that have totally confused me and really put me in a bad place. I will need to do a lot of research and try to understand some things for myself. Where is my little Trinity? What is this whole life about? Is there any meaning to anything anymore? Or should we all read a book to find our answers? I am very confused and very worried about my life from here on out.

Anyways that is a short version without pointing fingers at anyone or anything. I am on my own from here on out.

Love to all, I miss my baby so much...... Mommy and Daddy love you very much little girl. XOXOXOXOXOXXOXOXOXOXOXOXO

Saturday, February 8, 2003 8:49 PM CST

We made it through our trip to Seattle to view Trinity's stone. It was nice, but not exactly what we wanted so they are redoing it and we will make another trip to see it when it is complete. We also added a 5x7 of her on the stone which should be really nice. I am really excited to see it complete now after looking at the wrong one for the last 2 weeks. I spent some time alone with her during the visit which was really nice and good for me. I cried alot and miss her terribly but I am glad I did it. She was such a wonderful baby and was truly a blessing to all of us. Her love gives me strength to go on each day. I feel her with me where ever I am.

For some good news, some of you know that my step dad had surgery to have his kidney removed. He has Renal Cell Carsinoma (tumor in his kidney). He is doing well and the surgery went fine. He has been home for a few days and they should have the biopsy results next week. They don't plan on doing chemo or anything other than testing his blood every three months. I am feeling better about the whole thing. He was really nervous but he did great! Thank you Trinity for watching over grandpa!

Tomorrow we are going to Las Vegas for the night with Seth. It should be really fun. He has never been there but I am sure he will really like it. Hope you all have a wonderful weekend.

All our love,
Tracy and family

Darling Trinity,
Thank you for being such a wonderful baby and for teaching me to love more than I ever thought possible. You will forever be in our hearts! Mommmy Daddy and your brother Seth!XOXOXOXOXOXO

Wednesday, January 15, 2003 at 04:06 PM (CST)

It has been a while since I last updated this web page and although I want to write sometimes feel a loss of what to say. There is no way to describe the feelings that you have when you lose the one thing in life that you are meant to protect. Our children are to be protected by us as parents and as most of you know when it comes to the disease Cancer, there is not much we are able to do. This disease takes hold and rips your family apart in just a short time. As the family left behind we are now supposed to try and put the pieces back together. Each day is a new challenge and we are working hard to be strong for eachother and our son Seth. He is a wonderful little boy, full of life and energy. Seth finally had the chance to start school again this week and he is so happy. He loves to learn and play with the other children. Yesterday he kept saying he had to do his paperwork. What a doll! I just love the look on his face when he has done something to be so proud of him. It makes me so happy to know that he loves life so much and is so excited to learn and grow. He too misses his sister and talks about her often but through time and love he will know that she is still with us, just in a different way. We are planning on returning to Seattle for a short stay in which we will be able to see Trinity's memorial stone. We are very much looking forward to seeing it complete and in it's place. I will write about it when I have the time.

I would like to write about the last few weeks before she passed away as well, but I am still not sure I am up to that yet. I will soon.

Best of health to all,
Love you,
Tracy and boys

Dearest Trinity Luna, we made a special bear for you and gave her wings just like yours. She is a perfect gift from you to us. We will treasure her and keep her close to hug. Each time remembering you and your sweet little hugs you would give us. All our love, Mommy Daddy and your brother Seth. XOXOXOXOXXO

Wednesday, January 01, 2003 at 09:33 PM (CST)

Hello My darling Trinity! Today is a new year and I am very sad that you will not be here to share with us. Last night as we said Happy New Year we held each other tight Sean, Seth and myself me of course crying. My dear baby girl how I miss holding you and wish I could see you just one more time. Your smile is still with me, I close my eyes and there you are. Beautiful and happy as you always were. We will continue to miss you and wish you were here each and every day.

Your brother wanted some chips the other day and he picked out your favorite, Frito's! Then he pretended to eat them like you did sucking all the salt off first he was so proud. What a sweetheart. He said a really neat prayer last night as well. I am sure you heard him, but for the others reading he asked Jesus to keep her safe in his arms. What a wonderful way to end the day. We are very lucky to have him in our lives.

Today is New Year's Day and we took Seth to the Rose Parade. It was our first time doing anything like that. It was really neat to see that up close and personal. I have never been to a large parade like that. An experience that I will never forget. I missed having Trinity with us, but feel blessed to have shared it with Sean and Seth. Hope you all had a nice day.

Best wishes for a healthy New Year!

Thank you everyone for the wonderful entry's you have made. The words will live with us forever.

Love to all, Tracy

Sunday, December 29, 2002 at 10:55 PM (CST)

Although I just created this web page I wanted to add another entry to add some of Trinity's medical information.

She was born May 25th 2001 and died December 7th 2002.

Trinity was diagnosed with Neuroblastoma October 5th 2001 while she was having some tumors surgically removed. One of which had already been diagnosed as Infantile Myofribromotosis, which is a rare benign tumor.

When Trinity was 5 wks old she had a tumor appear on her back, near the left shoulder. Just days later she had another appear on her belly and then her head and also in her left labial area and a small pea size one on the inside of her left thigh. It was a very stressful time, wondering each day what was happening to her. As stated she had already had a biopsy and they made a different diagnoses then NB. Before she had surgery they did CT scans which showed even more tumor than we could see. She had one on her right adrenal gland that you didn't know was there until they did the scans. The surgeon�s decided that they wanted to take out her adrenal gland and we also wanted the tumor on her head removed plus the one on her belly. They were growing very fast and very visible to the eye. I couldn't stand having everyone stare when we were out in public. I know it is a bad thing to worry about but at the time, I had no idea it was Cancer. They did the surgery on October 4th, 2001 and let us know in the middle of the procedure that she had Neuroblastoma. I knew right away that it was Cancer. After the process that they go through to test the tumor they came back and said it was NB stage 4S. Meaning she was an infant and they gave her a 90-95% chance of living. They said they see all the tumor's like this regress and go away.

We took her home and only 3 weeks later we went back for follow-up scans to see if there was anything left from her surgery and they found another tumor on her left adrenal gland. The doctor's decided right away to start her on a low risk Chemotherapy. She went in for 4 cycles of chemo and then they looked at her scans again. They came back and said she should finish all 8 cycles because they couldn't see much change. The tumor on her back did however look like scar tissue but the rest seemed to stay the same with little to no change. The chemo medicine she was on where Carboplatin, Etoposide, Cyclophosphamide, and Doxorubicin (all dosages were for low risk).

After 8 cycles of chemo they decided to do another surgery to see if the tumor was alive per my request and the best way was to just take the whole thing and not do a biopsy. They took the tumor in her left labial area out in June, 2002. They found live tumor during this surgery as well, even after the 8 cycle's of chemo. They decided it was best to try another 2 cycle's of chemo this time using Cyclophosphamide and Topotecan at a medium risk level dosage. When they were done treating her with 1 of those 2 cycle's of chemo she had a stem cell harvest done. That took 3 days and was very hard on her. She was so tired and had many blood transfusions. She was there for the 4th of July and so we didn't know the results right away. I however didn't care and was taking her home. She had been through enough and I didn't want her to suffer any more. I told the doctor on the floor the last day that we were going home that night after the Pheresis and that was that. He wasn't sure what to say, but her nurse practitioner, Ji Lee, called down to the floor and told him that we were going home. Nothing he could do at that point. On Monday following the holiday we found out that she had enough cells harvested. This was also the same day that she would have chemo (her last of the 2 medium risk) treatments. When all was complete she went back in for final scans and tumor had spread to her left kidney.

Sean and I had a very difficult time getting the doctor's to do the surgery in the beginning of the step so I was very mad that they didn't just take the tumor out when it was only in her adrenal gland and now it had spread to her kidney. So, on August 1st, 2002 Trinity�s left kidney and left adrenal gland were removed as well as the tumor in her left labial area again. She went home but the healing would not go well in her labial area.

As the next two weeks progressed she had another set of scans to see how the surgery went. Well, we found something new in her belly area next to the left ovary and also in the labial area again. This was only 2 weeks after surgery and the doctor's didn't believe that is was tumor. I was in the room discussing the issue with them for over an hour when I asked the surgeon to look at her labial area that was not healing and showed him that there appeared to be more tumor again. At that time he looked at that other Doctor that was in the room and said she needs surgery again right away. He wasn't sure what to expect, but he knew something was wrong. Trinity's regular Doctor was out of town at this time and couldn't be contacted. I was miserable! My husband was working in California and couldn't be home for each surgery so I was alone for this one. They came back as the surgery ended and said that it was new tumor and not blood as they tried to tell me it could be. I didn't believe them so I forced the issue. Thank you, God for pushing me in the direction that you did. One of the Doctor's told me that there was nothing that could be done for her and I didn't believe that. I was amazed that they would even be saying that. There seemed like so many options still available for other's that there had to be something for Trinity.

On the last day of the hospital stay for this surgery (which would be her last) her Doctor came back from her vacation and she was informed of Trinity's news. She was amazed to say the least. Each step of the way, she kept saying that she would be alright and never let herself believe that she would not make it. Well, now it was becoming very clear that Trinity needed some serious treatment soon. They recommended radiation treatment right away. Mostly because her tumors were growing so fast, just days and they were back again. She was only in the hospital for 3 days with the last surgery and the next day she had tumor in her labial area again. Talk about frustrating as a parent to sit back and watch your child fall apart in front of your own eyes with nothing you can do to help them. I was angry at the world for a long time.

Trinity went through her first radiation treatment which lasted 21 days and was every day M-F. She started her TPN (home feeding) just the last few days of the first radiation treatment. When the first treatment was done they again did scans knowing her history that they best look sooner rather than later. They found more tumors and decided that she didn't get enough radiation to the area next to her bladder so they did a second radiation treatment for another 20 days. I thought I wasn't going to make it. I was so stressed out and mad at everything that happened. I just wanted to take my baby home and play with her. So, as the story goes she finished her radiation treatment and she again had follow up scans. This time they said she had new tumor in the kidney (her right one, the only one left). I was so upset, now what? They did more tests, biopsy to the kidney to see if the tumor was alive and what they saw was not enough to make a definite diagnosis at that time it appeared to be dead tissue. Of course a few days later they came back and said it was alive and that she didn't have any more options.

They had already done the regular things; surgery, chemo, and radiation.

Nothing was left so they asked if we wanted to just watch and let her body and the tumors claim themselves. I said no to any more biopsy�s as they were doing nothing for her and they just ended her up in the hospital. I wanted all the time with her I could have. All this took place on Halloween day, 2002. Later that night my mom and I took the kids trick or treating. I knew that this would be her last Halloween, but really it seemed like she still had a chance at living so I cried a little but stayed true to the thinking that a miracle could still happen.

Another week and a half went by and I had taken Trinity to a Naturopathic Doctor in our area. She was so fussy the whole last week and I had no idea why. He ended up giving her some Chamomile stuff and that night while at my father�s house she started vomiting. I thought she was ill from the medicine that he gave her. I brought her home and she ended up getting into bed with me early in the AM. When it was time for us to get up I realized that she had a fever of 102 and then she started to get sick again. I was very stressed out. I tried calling our Doctor but they changed the phone system and it wasn't working well so I decided to just take her there. When I arrived they knew I was on my way because I left a message and they put us in a room right away. A new Doctor that we hadn't seen before came in and looked at her. I finally got a look at her head and noticed that she had another lump on the left side of her forehead. I asked him to order a CT scan and he didn't think it was needed, but quickly changed his mind as I filled him in on her history and said I wouldn't leave unit they did the scan. They managed to get us in right away as Trinity didn't need to be sedated. The folks in the CT area were of course surprised to see us again. They did the scan and sent us back to see the Doctor It was an hour and a half before the Doctor came back to see us. When he returned, he showed me the scan and said that I was right, it was tumor. All I remember about the conversation was seeing the tumor on the right side of her head in the scan. It was huge, I was so overwhelmed. They hadn't planned on doing anymore scans but I told him I wanted to see her Doctor right away, she was in rounds. He said that she was on her way and would be with me soon. I managed to call my husband and crying desperately told him to come home right away. As I stated he was in California and all I could tell him was she had tumors in her head and he had to get home. I cried so hard I thought my own head would explode. I managed another call to my dad, who quickly came to be with me. My mom would have been there but she was taking care of our son Seth at our house. So, my dad and I stayed there all day while they decided what to do for her. They did end up doing another scan which showed tumor had grown 3x's the size it was in just a week or so. Trinity's Doctor called my husband Sean and told him to fly home and have someone else drive his truck and things home later which I am eternally grateful for. Sean flew in that night to be with us and we stayed the night in the hospital. This would be her last hospital stay. They put her on some medicines to keep her from having a seizure and also to help her with the pain. It finally made sense why she was so unhappy now. She was a wonderful baby, rarely cried and I was so frustrated the whole last week trying to figure out what was bothering her. Now we knew. They said that we could stay in the hospital or take her home and Sean and I both agreed that she should be home. She didn't like the hospital and was crying the whole time we had her in the bed. She kept wanting to be in her stroller so that is where she stayed most of that day before we took her home. I knew then that this was her last time being alive at this hospital and it hurt so bad. We were taking her home to die.

For the next few weeks she stayed with us at home. A few of the days she played and seemed like herself other than she had a small stroke that last night in the hospital which showed. She was still little Trinity and we loved being with her. She made everyone around her happy all the time. I will miss her forever! I will write about her passing another time this is too long already.

I also need a cry moment, thanks for reading.

Love you baby girl,
Mommy

Sunday, December 29, 2002 at 04:17 PM (CST)

Today is the first day of the web page and I am very excited about creating it. It seems odd that I would choose to make this only after Trinity has passed away. I wish I would have made this sooner to keep friends and family informed of all her treatments and the daily activites that we went through. However there is no turning back and I can use this for a source of strength as other parents are doing. I love to write about my thoughts and this will keep friends and family updated on how we are doing. We made it through Christmas and even had a pretty nice day. Trinity was very much around us. We played the Disney Sorry game with Seth our 4 year old son and I felt that she was here while we played the whole game. I chose the Snow White figure which is what she was for Halloween and I won! It was an amazing feeling. Funny how things like that can totally light up your day. Just the thought of her being a winner on that day, even though is was a game. She would have loved messing up the game while we were playing, she was too young to play. I have also started a funny tradition, I get up in the morning and kiss her beautiful face and have my breakfast with her. I also eat dinner if we are here in our room with her. I have started to involve Seth in the tradition. He likes it. Sean however doesn't say much which is normal for him. He is a really quiet person, especially when it comes to his feelings. That is okay, he does however eat with us. It is nice. Maybe this is the only way I will be able to keep the family together for dinner. I have always said dinner was family time, time to share our day with eachother and not worry about what was on TV or bills and such. Maybe Trinity is helping me out with this one. It's a nice thought anyway.
Well baby girl, thank you for being apart of our lives and loving us so much. You were a blessing and will never be forgotten. All our love Mommy Daddy and Seth.

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