WOW!! It has been awhile

The time flies by when I am at home and playing.

I was accepted into Pre-Kindergarten so I get to start school in a couple weeks. I am so excited and cannot wait to ride the school bus every morning with my boys. I get up everyday and ask mommy, 'do I go to school today?' Mommy says that she hopes that I get into Mrs. Tricia and Mrs. Rachelle's class like Nic.

I am feeling great! Which is great because for a couple weeks there, I was feeling really bad and had fevers back to back. The doctors said that they were viruses but each one made me sicker even though my counts were good. I ended having to have a spinal tap, my second, and I fought and fought the doctor and nurses even though they gave me the silly medicine. They think that I don't know when they have something planned but I always do. My six month scans are in a couple weeks so I get to ride in the doughnut again which I like but they never let me see the pictures even though I ask to.

After those back to back fevers, I have not been sick at all. I have be finding trouble anyway I can so I have a few bumps and bruises. My boys and I are building forts almost everyday and mommy is letting us build one in the livingroom!! Also, I have been cutting my hair off in clumps. Mommy gets so angry with me about it but I keep telling her that I just don't want it. Papa wants me to come to the shop and will cut it for me to fix what I did. Maybe mommy will let me...

Till next time, hugs and kisses to everyone!

Amelya

UGH....Fever!

hi everyone!

I am unfortunately in the hospital with fever. It began Thursday night and I came in to the hospital to be admitted on Friday. I have had 4 more fevers since being admitted so now I am on 2 antibiotics and they are doing second rounds of cultures and have added a couple more tests. I am in good spirits and have had mommy play Break the Ice with me as many times as I can which keeps me happy. I keep breaking the ice but the reward for the winner is two kisses so I guess I win no matter what. We are in my favorite room with the view of the tennis courts and the Zoo. My friend Jeanne-Avery is here as well with fever so we have been chatting when we both feel up to it. I have to stay till I go 24 hours without fever. The doctors told mommy the only reason I had to come in was because I still have my port and it could be infected but, when my port is out, I do not have to come straight here anymore but can stay local.

I have my 3 month scans on Monday so fingers crossed that all is still well and I can get clearance to go to Pre-Kindergarten in August. I am really excited about that! I want to ride the school bus with my boys. Also, GREAT NEWS!!, I was taken off my low fat lactose free diet and placed back on regular food with the exception of having to drink only 2%milk instead of whole. So things are getting closer and closer back to normal.

hugs and kisses,

amelya

Happy Mother's Day

Here are some pictures of me and 'my boys' smiling for momma!

'happy mudders day ma-me, you so boo-t-ful!'

Pagent Queen

On May 2 I went to the 2010 Spring Miss Pagent in Springfield. I was given an Honorary Title but got to participate by dancing with some of the contestants and posing in front of the judges during the interludes in between age groups. I had a BLAST!! I just lit up in front of the judges that said I could have competed. With the crown and sash I won I also won free entry into the next pagent and a photo shoot with a top local pagent photographer for my beauty shots that are used in the photogenic category. I cannot wait till October when I can compete with the friends I made Sunday. In the picture of me dancing the little girl with me is my new best friend; her name is Sunny and she won the age group that I am in.

CureSearch Walk

On Saturday May 1 we participated in the new Orleans leg of the CureSearch Walk. This is a fundraiser walk that honors all those that are fighting childhood cancer, have survived childhood cancer or have lost their battle with childhood cancer. The organization holds these walks all across the United States. Each team dresses up in some manner to set themselves apart from the other teams. I got my face painted and glittered and had a guy dressed up like Spider-Man made me a balloon puppy dog. I was honored with a medal and got to lead the walk around Audubon Park with some other kids. As you can guess, I choose to dress like a princess with a crown and all. I stopped along the way to take pictures in a tree that afterwards I tried to climb in my long dress. I had so much fun there and want to do it again next year.

Happy Easter

Hippity-Hoppity, Happy Easter to everyone!!

I hope you all have a great holiday! I send my love to you all. I am in the hospital today but considering this long road, this is my first holiday 'on the inside' so I guess I am blessed!

Hopefully I get to leave this afternoon.

All is wonderful with me outside of this recent sickness and I have been playing more than I can handle and cheering my brothers on at baseball. My hair is about an inch or so long and is growing back in blond and curly, who knew!?! Pictures soon to follow.

hugs and kisses,

Amelya

and the verdict is...

The doctors have came down with a decision for me and it is NO MORE CHEMOTHERAPY, yay!!!! I do not have to take anymore of that stuff. I do have to go back every three months for scans to watch the tumor left and check for any new growths. Now, depending on the scans, I get to start Pre- K in the fall, hopefully at least part-time.

hugs and kisses,

amelya

Photo montage!

drumroll please............

Good News!! The biopsies all came back with NO VIABLE CELLS. The pathologist only found dead cancer cells and scar tissue in the samples he tested. The doctor says that it is not 100% but she feels comfortable with these results based on the tissue structure as well as its composition. I am going to get a CT scan Tuesday to check on the placement in specific to the position of the tumor inside and my ureter. I am having some issues and the doctor wants to find out how much of it is to blame from the tumor and how much is to blame because of damage made by the Chemotherapy and Radiation. I may not even have to have any follow up Chemotherapy which makes my momma and daddy happy. So in the next few weeks I will find out the next step from here but I must say that ---- I am a Rhabdomyosarcoma SURVIVOR!

hugs and kisses

Amelya

Checking in....

I made it through my biopsy like it never happened. Well, actually, since I was sleeping I guess it did not happen. I woke up from anesthesia really well ( I did grumble my anger about not being told about having to go to sleep) and was calm and within minutes was happy and giving hugs away. The radiologist said that he got 4 good core samples for the pathologist to test. He told us that it should take only a couple days to get results. I have a clinic appointment on Friday to get the results.

Fingers crossed!

hugs and kisses,

Amelya

CT Guided Biopsy

Today is my CT guided biopsy on the golf ball sized tumor that is left. I am a little scared even though momma keeps telling me that I am going for a ride in the doughnut to take "big" pictures. I know that there is more than that to it today. I am being real shy but momma and daddy and me are listening to music and I am calming down and singing along.

Be in prayer for me and I send to all of ya'll hugs and kisses

Amelya

D-Day Anniversary

Today marks one year since I have been diagnosed with cancer. I am not feeling well right now because I am having a reaction on my face that has caused a bad irritation and is real painful.

I got a date for my CT guided biopsy-- it will be on Wednesday February 10 at 9 am, so please be in prayer that all goes well and without any complications.

My momma got me a really cool gift today. She bought me a set of press on nails and I LOVE THEM!!! They are pink with flowers on them.

hugs and kisses to everyone!

amelya

New Path

Hello to everyone! I am doing well right now just playing with my dolls and roughing around with my brothers when they get home from school. I do not know if they let me win or if I am just that tough.

As of right now I am not going to have surgery because the doctors feel that they can get a more accurate assessment of my tumor with a CT guided Biopsy. It has my momma and daddy a little scared because I will still be under anesthesia for a hour. I hate not being able to control everything that is going on but maybe I will wake up and not be too angry.

I do not know yet when I am doing this but just know soon. Momma told me that I am going to have more pictures and that I get to ride through the 'doughnut' again which I like to do. The techs there always give me a handful of stickers when I get done. I LOVE STICKERS!

Please pray for a friend of mine from Children's Hospital. We met at the Hope Lodge while I was getting radiation. Adrianna was very nice to me and she needs our prayers as she gets closer to becoming an angel.

hugs and kisses to everyone,

Amelya

Meet the New Surgeon

Tomorrow we will meet my new surgeon. He is going to talk to momma and daddy about my biopsy surgery. The plan is to go in and take as many samples as they can of the tumor left and then have a pathologist study them so we will know if there are any live cancer cells there and if so where the concentration is so as to maybe make a better rescission surgery plan. The doctors really want to get this tumor out of me but do not want to do anything that will cause me long term damage. So my options are no more chemotherapy, if the tumor is dead; a different chemotherapy if the tumor is alive but not operable; surgical rescission to remove the tumor.

I am doing well otherwise. I am eating great and so mommy has not hooked me up to my feeds in a couple of weeks. she keeps telling me that if I would take my medicine by myself then I could get my tube removed but I just do not want to take my medicine. As always, it is my way or no way!

Hugs and Kisses,

Amelya

Update

Well I got through my Chemotherapy with only some cramping this time-- no severe diarrhea repeat!!! Thanks to all of you for your prayers and support.
Went to Clinic today to get my CT scans to check on any progress made by the radiation I had in August-September of last year and also to see of the last round of chemotherapy did any damage; to our dismay there was no measurable change. The doctor wants to go ahead and do the multiple biopsy surgery to get a pathologically view of the tumor left. We will have a surgery date soon I am sure because she wants to get on with my treatment and get me Cancer Free.
As soon as we get the date I will let everyone know.
Hugs and kisses,
Amelya

and the doctor says........

Hi everyone!!
My doctor told us that she wants to do some more biopsies and pictures before any decisions are made about surgery on the tumor that is left inside. She was concerned that it might still be active but have a shell around it of dead cancer cells and just wants to be positive before she lets this stay inside of me. She does not want to take chances with this last piece and mommy and daddy agree because if this were to grow, my chances of winning the battle are drastically cut. So we are back on the harder chemotherapy for a month and then I get to take new pictures and then I get presented again to the tumor board where they will make a new battle plan for me. Please pray that I make it through this next chemotherapy with little or no side effects and that God continue to work miracles in me. I thank him every night in my prayers and also all of you who are praying for me.
Hugs and kisses,
Amelya
here is a picture of me picking the flowers while we were up in Memphis at St. Jude's

update

Hello everyone, this is Amanda aka mommie, I have struggled for days on how to put into words what happened at St. Jude's; the important part is that Amelya's PET Scan came back cold basically put Amelya is cancer free. She does although still have a mass in her pelvis that is the size of a golf ball. The mass is still attached or butted up to her rectum and involves her ureter in some manner that the surgeon says requires a MRI to better see. Larry and I have a decision to make that we are waiting until we speak with Amelya's oncologist before making; we had hoped to talk to her before making this post but we still have not done so. But for the time being we are going to do more chemotherapy and give it and the radiation more time to get rid of this mass before we make a final decision on the removal of the mass. Amelya will be going back to St. Jude's in late January or February for a new scan and visit with the surgeon there following her case. Please continue to pray for Amelya and our family so we can have clear minds and can make our decision the most informed and with divine guidance so that we make the best decision for Amelya. Please continue to pray for Amelya that her body can hold up to this stronger chemotherapy and her recovery from its side effects is quicken.
With love and thanks for support,
Amanda

we finally have a date!!!!

EXTRA!!EXTRA!! St. Jude's has finally given mommy and daddy a date for me to go to Memphis. We have to go Sunday for our first appointment. Monday they will be poking and prodding me. And Tuesday will be my PET/CT scan. I will have to be put out for this because this scan takes over two hours to do and I have to be perfectly still, which everyone knows is just not in me. On Tuesday we will get to talk to my surgeon, Dr. Davidoff, and find out what his tentative plans are and when we will have to come back. Please be in Prayer for us for this trip, while we are on the road and while we are there.
Hugs and Kisses
Amelya

Pretty Princess

Here are some pictures of me from the dress-up party last Friday at Children's Hospital. I did not want to trick-or-treat so I just walked a dog. I am sooo cute, aren't I? I practiced my princess wave. When all was done I just decided that I could not take another step and just fell to the floor right in the middle of the hallway of the Hem/Onc wing. Being a princess is hard work!

More Pictures

Well I have a new set of pictures to add to my collection, I had a colonoscopey yesterday. The doctors found just what they wanted, a nice pink colon with no obstructions-- just what they want all colons to look like. YAH!! but the problem is that we still have no answer as to why I have had diarrhea now for over a month. So that means the problem is in my small intestines which they cannot reach to scope. The gastrologist said that I can try immodium to stop the diarrhea so we shall see what happens.The doctors are preparing once again to send me home so I can have some time at home before going to St. Jude's in Memphis. Fingers Crossed! Here are some pictures of me and my friend Madison painting and using GLITTER!!!

Whoops, not so fast says the doctor

Hi--
Just as we were packing up to go home, Dr. Gardner came back to my room to speak with mommy and daddy. It seems she has changed her mind and decided that I cannot go home. Boohoohoo!

It seems that when my feeds were increased, so did my diarrhea. For that reason Dr. Gardner decided that further investigation needs to be done to determine what is going on with my intestinal tract. As soon as I know something, I will let you all know.

In the meantime, I get to spend the weekend with daddy, while mommy gets to go home and take a break. I can be pretty demanding, you know :-)

Love and kisses,
Amelya

It's a Homecoming!

Hi --
Just wanted to let you all know that I am FINALLY getting out of the hospital! Whoopee!! After two long weeks, the doctors finally decided to let me go home. I still have diarrhea, but the doctors decided that as long as more food is going in then coming out, I will be okay. So the tube feeding at night will continue. The reason for the diarrhea? Still not sure, but the doctors are thinking it is a combination of things, including my chemo treatments.

I have been doing lots of arts and crafts this past week. Above is a picture of me finger painting -- or rather hand painting. I made ghosts with my hand print to decorate the walls at the hospital.

On Wednesday the doctors took a CT scan and it showed that all my intestines are looking good. It also showed that the tumor that is left is smaller. This is great news -- and not so great news. The great news is that the new chemo treatments are working. The not so great news is that this means that the tumor that is left has live cells in it. So the doctors are still thinking that I will need another surgery to remove the remaining tumor. When I know more about that, I will let you all know.

Today, before I left the hospital, I got to be in the costume parade. As you can see I went as my favorite thing -- a princess! How do you like my princess wave?

Love to you all!
Amelya

In Hospital Again

Hi everybody,
Just wanted to give you an update. I was only home for two days, and now I am back at Children's Hospital again. It looks like I will be here for a little while. It seems I have an "acute gastrointestinal illness". Mom says it is called "C-Diff" whatever that means. I know that it means I have bad stomach cramps, nausea, and diarrhea. The doctors told mom that I am contagious, so I cannot leave my room. They also said I will be here 10-14 days. I also will not get anymore chemo treatments until this is cleared up. I will keep you posted if anything changes -- or I get to come home again!!
Love and kisses,
Amelya

New Chemo Treatments begin

Hi,
Guess what! I got to come home for the weekend!! It was the first time I have been home in quite a few weeks. Boy did it feel good to be home with my brothers and mom and dad.

On Sunday my PawPaw had bbq chicken. He, dad, and a bunch of my uncles and aunts watched the Saints beat the New York Jets on TV. Go Saints!!! I got to play all day with my cousins and I really had a good time.

On Monday I returned to Children's Hospital and was admitted again. I will stay here for a week (or more if needed) while I get my first round of my new chemo drug. I get a dose everyday for five days. Once I finish that, I get to go home again for two weeks. I will return every third week for the next round of chemo.

So far, I am doing okay. Today I got a fever and the doctors are watching me. I just woke from my nap and I am feeling a little better.

All the kids are decorating their doors for Halloween at Children's Hospital. This is a picture of my door -- It reads "Caution! Princess Inside May Love You to Death"

And I love you all,
Amelya

Still at Children's Hospital

Hi everyone,
Well I am still at Children's Hospital. This, I think, is my longest stay here yet.

I finished my radiation treatments this past Friday. While I am feeling better, I have not been eating a whole lot. On Sunday the doctors decided that I haven't been eating enough so they gave me a feeding tube. It is suppose to be a temporary thing; the doctors want to build me up nutritionally so I will be better able to handle my new chemo treatments. The tube will only provide half of what I should be eating, and mom and dad are suppose to encourage me to continue eating.

Mom and dad are still waiting to hear from the doctors on exactly how my new chemo treatments will happen. It may be that I will be in the hospital for the week I am receiving treatments, or I will receive them as an outpatient each day. As soon as they get more information, I will let you know.

Love and kisses,
Amelya

Radiation Treatments Begin Again

Hi everyone,
Thought I would give you an update on what is going on. As you can see by my picture, I am still at Children's Hospital, but I definitely am feeling better. I'm wearing my pretty pink polka dot headband. I also have Tinkerbelle in bed with me. It is a present my cousin Randee brought me from Disneyland. She got me lots of goodies, including a Tinkerbelle necklace and a dolphin that I like.

I started receiving radiation treatments again yesterday. The doctors decided to keep me in the hospital while I receive the rest of my treatments so that they can manage my pain meds closely. They said I will have to stay until my bottom is healed and I no longer need any pain meds. I have to stay in my bed while I am here because they keep me hooked up to a machine that beeps everytime my heart rate or breathing gets too low.

The doctors are also changing my chemo therapy. Every third week I will have to stay in the hospital because I will receive chemo every single day that week. Right now I am not sure as to how long that will go on.

Well, that's all for now. Hugs and kisses to you all -- I love you!
Amelya

Amelya back in her room at Children's Hospital

Hi everybody,
Well I am back in a regular room at Children's Hospital now. They moved me out of Intensive Care on Thurday evening. The doctors say that I will still be here a while so they can continue to monitor my heart rate and breathe rate. I am now on a machine that buzzes (very loudly) every time my heart rate gets too low (or too high) and my breathing gets too slow.

I still am on a lot of pain medicine because my bottom is still very raw and blistered. But is it starting to heal and is not so swollen now. Of course, I still do not feel very well and cry a lot because of the pain.

Saturday is the first day I felt good enough to have visitors. Uncle Doug and my cousin Lainy came to visit me. In the picture you can see me and Lainy. Having Lainy there did make me feel better -- I hugged on her, let her hold my finger, and helped give her a bottle. I even cracked a smile for her.

Later daddy and my brothers (who I started calling "my boys") came to visit. I actually laughed and played with daddy and "my boys". I got so excited laughing, my machine started buzzing because my heart rate got too high!!

Please keep praying. The doctors say that I am staying at Children's until my bottom is much better. They said that then they would talk about what is next in the treatment plan for me.

Love and kisses,
Amelya

PS -- My grandma met a lady and her daughter who came to visit her for the weekend. The mom is at Children's with her six-year old son who has leukemia (diagnosed in 2006). They are from Mississippi, and this mom has been at Children's for a while now -- her son just got a bone marrow transplant. In addition to all this, her 17 year old son has now been diagnosed with leukemia (last year). He is being treated in Birmingham. Please pray for this mom and her family!

Amelya in Intensive Care Unit at Children's Hospital

Hello everyone.
I have not been having a very good week at all this week. On Monday I went and got my radiation treatment, and I went to clinic and got my chemo treatment. Everything was fine except my counts were low, so I also got a blood transfusion.

Very early Tuesday morning mom woke up and realized I had a 104 degree temperature, and so off to Children's Hospital I went. Since then, it has been a downhill slide.

My bottom area, both in the front and back is now very swollen, red, and blistered as a result of my radiation treatments. As you can imagine, it hurts -- alot!!

I also started having problems breathing and the doctors decided I had some sort of "croup-like" virus. So they started giving me lots of medicine (including steroids), along with lots of methedone (my pain med). Then my breathing got worse and they started me on breathing treatments and oxygen. My breathing got better yesterday evening so everyone thought I was getting better. Only today, my breathing got much worse -- mom said I was only taking 4 breaths a minute. Very scary for everybody. So off to intensive care I went.

The doctors think I am having a reaction to the pain medication -- and that possibly I was getting too big a dose. They gave me medicine to combat that, only now I am in a lot of pain again. They are trying to decide what to do for pain and are watching me very closely. My respiration rate is still low.

Pray that Jesus takes good care of me. Pray that my respiration rate goes back to normal and my bottom area heals and I am not in pain there any more. Pray that I will receive a complete healing from the cancer. Also pray that God gives the doctors wisdom and understanding on what to do. One more thing -- please pray for Mom, Dad and my brothers.

Love and kisses,
Amelya

Meet Candy

Hi Everyone,
I just wanted you to meet Candy, my dragon. Candy came to me all the way from Georgia. I love to hold Candy, especially when I am going to get treatments, or when I am in the hospital. I pet the side of her face because it is soft and reminds me of Roscoe, my grandma's cat. I love her floppy tail, and I show it to everyone. I named her Candy because she is pink with streaks of blue, just like cotton candy. Candy is a Webkin, so I get to go online and play games with Candy, feed her, and set up her house. Some of the other kids at Hope Lodge help me play some of the games, and we have lots of fun together. Thank you Aunt Eileen for sending Candy to me! Grandma says every princess needs a dragon, so now I have my very own dragon.

Just to let you know, I've completed another week of radiation treatments, and all is going well. The doctors did decide that I will have at least 28 treatments. Another big girl thing for me -- I have been expressing a desire to potty like big girls. The doctors told mom from the beginning to not try to potty-train me, but little do they know, I make the decisions. It looks like I am deciding enough of these diapers!

Love and kisses,
Amelya

UPDATE!!!!

Hello everyone!! Thanks for all your continued prayers and support, as you can see from my other posts, I can really feel God's presence and protection around me. Today momma and daddy were told that I am going to have to have another surgery. We are going all the way to CHICAGO for it. My doctor wants us to have the surgery done by someone who has done the surgery I need before. We will be going for there first week of November. BURR-R-R!!! There's going to be snow and lots of it we have been told. Please pray that all will be well with this situation.
Radiation is going well with minimal side effects. We are three weeks in and have three weeks to go. The nurses really love me at Touro and try everyday to make me smile.
Hugs and Kisses!!!
Amelya

Amelya is Praying Too

Hi Everyone,
We just wanted to share this picture with you of Amelya praying.

This picture was taken this morning just before Amelya's radiation treatment began. She had already been given her anesthesia, was just put into place on her "special pillow" that holds her in the correct position for the radiation treatment, and they were about to begin. Amelya should not have been able to move at all, yet she did.

Just goes to show that the spirit is strong even when the body is weak.

This quite amazed the nurses that Amelya did this - they asked for a copy of the photo because it was such an inspiration to them. We hope it is an inspiration to you too.

Please, keep praying for Amelya's complete healing.
Love to you all,
Amelya's mom and dad -- Amanda and Larry

1st Week of Radiation

Hi Everyone!
I completed my first week of radiation treatments this past week and then I got to come home for the weekend. This picture is of my brothers and me, waiting in line for the water slide at Global Wildlife Center Family Day.

Please continue to pray for me.
Right now the doctors have not said how many treatments I will have to have -- initially they said four weeks, but now my radiologist says that I might get six weeks of treatments. The side effects of the radiation treatments can be pretty severe, so I hope you all will continue to pray for me. Some of them include soreness, and problems with urinating and with bowel movements while I am receiving the treatments. The doctors said this will start in about a week. Longer term issues I could face include damage to my vaginal area, uterus and ovaries. This means that I will not be able to conceive children when I get older. Even more importantly, I may not enter puberty on my own, and may encounter other female problems when I am older. Please pray for me that I will not have these kinds of problems. Also pray that the doctors get every spot that needs to be radiated, and only those spots.

As I said earlier, I got to come home for the weekend -- it was good to be home with mom and dad and my brothers. Saturday we got to go to family day at Global Wildlife Center. I saw kangaroo and giraffes there! I got to slide down the water slide and hula hoop while paw-paw and his band played music for everyone there. We ate hamburgers and hot dogs, and had a sno-ball. It was a lot of fun.

Today I went back to New Orleans to start my next week of radiation treatments. I also started back on my chemo treatments today, which means I probably won't get to go out in public again for a while. I will be at Children's Hospital today and tomorrow while I get my "chemo-cocktail". Then mommy and I will stay at Hope Lodge the rest of the week while I get my daily radiation treatments. Friday I will get to go home again if all goes well!

Love and kisses to you all!
Amelya

Happy Birthday to Me!

Hi everybody!

Today is my birthday!! I am now three years old!

Yesterday we had my birthday party and boy did I have fun. It was a princess party -- I had a princess hat and mommy made me a a princess cake. We went to the state park and had bbq hamburgers and hot dogs and played in the water park. It was great fun as you can see by all the pictures, in spite of the rain.

Almost all my cousins came to my party -- so did alot of my aunts, uncles, and my grandparents (all those who did not have to work!). We have a pretty big family so that is a lot of people!

My aunt Michelle and uncle Mark brought a princess pinata and we all took a turn hitting it. In this picture you can see my brother Garrett giving me tips on how to hit the pinata.

Everyone sang happy birthday to me. Then my cousin Bethany and all my family dared me to put my face in the cake and eat it.



When I wouldn't do it, Daddy, and then Bethany put icing on my face. I returned the favor to Bethany and we had a cake icing face painting contest with each other.


It sure was funny. Below is a picture of my brothers enjoying my birthday cake.


Afterward we all played in the waterpark. Everyone had fun running through the water. My brother Garrett is waiting for the bucket of water to dump on his head!

We climbed on the frog and turtle. In this picture my cousin Regis and I were playing with the turtle.


Then I got into a watergun fight with some of my cousins. We shot at each other with the big water guns.

Then we all went to the play ground and played on the slides. After all that I was pretty tired and needed a little rest break. Nothing like a great big daddy hug when you've been partyin' all day!

The last picture I have to share with you is one of me and my cousins who were able to come to my party. I told you I have a big family!!

Today I go to Hope Lodge with mommy. We will be staying there for the next four weeks because I have to have radiation treatments everyday. Daddy and brothers will come and visit me and mommy during the week, and we get to go home on the weekends. I promise to give you updates on how things are going.

Thank you Jesus for healing me.
Love and kisses to you all!
Amelya

PS - Grandma said that she plans to print out this blog for me to read when I get bigger. Please feel free to add your comments to my postings!

Doctor Visits this Week

Hi Everybody!
Thursday and Friday were very busy days for me. On Thursday, mom, dad, my brothers and I went to visit Dr. Steiner, my surgeon. He said the pathology report came back that the tumor was 99% dead! Yea! He said there were only a few cells that were live in the tumor. He also said I am healing from the surgery very well and released me back to my oncologist, Dr. Gardner.

On Thursday I also went to meet my Radiologist doctor. They wanted to do some CT scans to set up for radiation treatments. I did not want any part of that, and so they scheduled for me to come back on Friday to try again.

On Friday I went back to New Orleans again. This time mom, grandma and my baby cousin Lainy went with me. I still did not want to cooperate with the radiologist, so they gave me some medicine to make me sleep and they took the pictures they needed. When I woke up, I was wobbly and loopy. I sure got happy too! Grandma called it happy medicine and said we might need to get more of that kind of medicine when I get cranky. I told her I wanted more happy medicine. Mom sure thought I was funny.

I met with Dr. Gardner, my oncologist, on Friday too. This picture is of me and mom, my baby cousin Lainy, and my aunt Michelle, who came to visit us while we were waiting at Dr. Gardner's office. We all went to lunch after we finished, and we had a good time.

I still need your prayers.
Chemo treatments will continue, and Dr. Gardner says they will start again in two weeks. She also said that the pathologist could not determine where the tumor originated from, so we still don't know the answer for sure. While they got the tumor out, the CT scans the radiologist took on Friday showed a "suspicious" area that she plans to zap with radiation. There also some pretty serious side effects to the radiation treatments that I will need God's help with. Even thought the surgeon moved my ovaries and uterus over as much as he could, I am still just a little girl. Chances are that my uterus will suffer scarring and my ovaries will be radiated. This means I probably will not have children when I get older. It also, more importantly, means that I might not go into puberty on my own. In addition, my pelvic bones will get radiated, and I might develop "soft bones". This will result in my bones in the pelvic area not growing and developing as they should. This means I might not grow to the size that I would have normally. Please pray that these side effects, that the doctors are saying are highly likely, will not be the case for me. Pray that I will grow and develop normally as other young girls do, and that I will live a long, abundant and happy life!

Love and kisses to you all, and thank you so much for your prayers and good wishes. It really does help to know that I have you all out there cheering me on in this journey.
Amelya

I'm Home!!

Hi everybody,
Guess what? I got to come home tonight! It was wonderful to be out the hospital. Before going home I got to go and visit with my aunt Elizabeth and uncle Len. I got home and got to play with my brothers. Sure feels good to be home again.

We still haven't received the report from the pathologist. My oncologist is out until next week, and it may be that I will have to go before the tumor board again so all the doctors can decide what to do next. As soon as I know, I will let you know. In the meantime, it looks like I get a week or two off to finish healing from my surgery.

Thank you Jesus for healing me!
Love and kisses,
Amelya

A Busy Day

Hi everybody,
Today has been a very busy day for me. This morning my doctor came and took out my catheter, and unhooked me from everything. He picked me up and stood me on the floor and asked me to walk. You can imagine my surprise! While it hurt, I started walking.

Since then I have taken two more trips around the nurse's station, to the play room where I played for a while, then back to my room. In these pictures you can see where I took a little break from walking in the play room. How you like my new pink Dora shoes?

After I rested a bit in the chair, Paw-paw and I looked out the window at the birds for a while before I walked back to my room to eat dinner.

All in all, I have to say that it was a pretty good day, and I felt better today than yesterday. Mom and dad are very proud of me. Paw-paw says I'm amazing, and Grandma keeps telling me I am a very brave girl, made of tough stuff. I told her that she was right, that I am tough stuff!

Love and kisses to you all!
Amelya

Hello Friends,
Thank you so much for all your support and prayers. You cannot imagine how much knowing that you were praying for Amelya comforted us and got us through the last couple of weeks and especially the last couple of days. It was especially comforting yesterday knowing you all were praying, just as we were before and during the surgery.

Most of all, we want to thank God. Based on all the doctors expected to happen yesterday, it is truly a miracle. The doctor only had to make one cut; the tumor was smaller than what the doctor expected to find; the tumor was not connected to any of her vital organs; the surgery did not compromise or harm any of her organs. We truly are thankful to God for all of this.

Amelya woke up this morning and asked to sit up. She drank and ate some, and talked with us a bit. She even felt good enough for a few moments to "ham it up" and smile for the camera.
A couple of hours after this picture Amelya was moved out of the ICU and into a room. While she slept most of the day, she is doing well and went most of the day without complaining of pain. God truly is good.

Please keep praying for Amelya. While we all feel the worst is over, there will still be more treatment to make sure all the tumor is gone. In addition, with this type of cancer, there is the possibility of re-occurrence until she is fully grown. Pray with us that she will soon be diagnosed as cancer free, and remain that way.

Again, thank you all for your concern and prayers.

God bless,
Larry and Amanda, and brothers Garrett and Nic
Grandma and Pa-Paw Breaux
Grandma and Grandpa Holland
Great-Grandma, and all Amelya's aunts, uncles, and cousins

Praise God -- The Tumor is Out

Hi family and friends!
I had my surgery today and the good news is -- the surgeon only had to make one cut. The better news is -- he believes he got all the tumor out without any harm to any of my organs. It wasn't connected to any of my vital organs. The best news is -- God is good and faithful!

The pathologist is going to examine what they cut out to see if they got it all. The surgeon marked everything for the radiologist to do radiation therapy if necessary. The surgeon said it could be scar tissue left or muscle tissue or small portion of tumor left. Believe with me that the tumor is completely gone.

Thank you for all your prayers!
Love and kisses,
Amelya

Surgery Scheduled

Hi everybody,
This picture was taken by my Aunt Michelle when I went to my last clinic appointment a week and a half ago. I decided I wanted to lie down in the book shelf in the waiting room. Not sure what happened to all the books that are usually stored there. Aunt Michelle thought that I was being funny and took my picture.

Mommy, Daddy and I went to talk with the surgeon this past Tuesday. Grandma and Aunt Linda came too. The surgeon, Dr. Steiner, talked about the surgery and how he plans to do it. He said that he will go in just like they do when they do a c-section. He said he plans to first mark all my vitals organs, then take out as much of the tumor he can doing as little harm as he can to my organs. He said once he gets in there he may have to make some judgment calls on what to do, and said he would come out and talk with mommy and daddy before making any major decisions, such as removing an organ. Dr. Steiner said that they still don't know where the tumor originated from, so he really can't tell us exactly what he will have to do once he gets in there.

Dr. Steiner said he will then close me up and turn me over and cut me again, from the bottom of my spine to my rectum, and then take out as much of the tumor he can reach that way. He said that after he finished trying to reach the tumor from the back, he may have to then go back in from my front again, and get any remaining tumor he can reach after working from my backside. He said if there is any more tumor he left, he plans to mark it so the radiologist can then focus my radiation treatment on those areas. Mommy and daddy asked him how long the surgery will take, and he said he plans to not schedule anything else that day.

Two positive things that Dr. Steiner said -- one, that there is the possibility that the tumor is dead, and it is just a fibrous mass left in there to be removed. My onocologist, Dr. Gardner, said that part of the tumor is dead, but she thinks there are still some live cells there. We hope that when Dr. Steiner goes in, the tumor will be all dead.

The other good thing he said from the start of the meeting was that his goal was to go in and remove as much tumor he can doing as little harm as possible. He said that he felt confident that he could get some of the tumor out, he just was not sure how much he would be able to remove. We all got to see my CT scans for the first time -- we saw the first one when I was first diagnosed in February, and the one they took at my last clinic appointment. We could see the change in size of the tumor. In the first scan, the tumor filled my entire pelvic area, hip to hip. In the latest scan, the tumor was over more to one side, and filled about half the area. We also got to see where it is located, and it is very low in my pelvic area, below my bladder and kidneys. Mommy, grandma and aunt Linda are wondering if it originated from my hip muscle...

Please be in prayer...
Right now, the surgery is scheduled for next Friday, July 24th. Please be in prayer for me, especially that day. Also please be in prayer for the surgeon, Dr. Steiner. Pray that God quickens him on exactly how to approach the tumor, and that he can get it all out without damaging any of my organs. Pray that I heal very quickly, and will not be in pain after the surgery. Also, please pray for mommy and daddy.

Love and kisses to you all,
Amelya

I need your prayers...

Hi Everybody,
Well, I finished the additional rounds of chemotherapy and this week the doctors at Children's did a re-assessment. The news is not too good. They could not see any reduction in the size of the tumor from the last two rounds of chemo. They are now thinking that the tumor is becoming resistant to the chemo. All the doctors had a meeting about me on Wednesday, and my oncology doctor, Dr. Gardner also contacted the Mayo Clinic to get input from them on what they thought. All the doctors seem to be in agreement that the tumor must be removed, in spite the risks of damage to some of my organs.

An appointment is scheduled for next Tuesday, July 14th with the surgeon. This is when the surgeon will outline what he knows, and what are the exact risks based on the latest CT scans of the tumor. If mommy and daddy agree to the surgery, the date will then be set.

Mommy and Daddy are faced with some very hard decisions right now, and they need your prayers. The doctors did say that this will be a hard surgery to do, and it will be hard on my body. So I definitely need your prayers that, first, it is not as bad as it seems on the CT scans and the tumor can be removed easily, and second, I will astound them all, and recover quickly. The surgeon needs your prayers, that his hand will be steady, and his eyes will be sharp, his mind will be quick to recognize what is tumor and what is not, and he leaves no bad cells behind. Also pray that if there is another alternative that is safer and better, that God will quicken the doctors to that idea.

Love and kisses to you all,
Amelya

Lets Go Out To The Ballgame!!

Well Monday was uneventful. Which is good because we have no new symptoms or side effects and I gained a pound in the last week, yea!!! The doctor said that she is going to get the ball rolling on setting everything up for my next reassessment in four weeks so please keep me and the hospital staff in your prayers so everything will run smoothly. I got my Chemotherapy like usual and went home. Good news is that the doctor gave me permission to go to my brother's baseball game this week because my counts are good. So-o-o GO YAYA!!!!!

New Hair

Kisses to everyone for your prayers because my vomiting has stopped. I had my test on Monday and boy was it long. It took over four hours but mommy and daddy kept me entertained. I got to play on the playland set that the hospital had set up for kids to play on so in between each set of pictures, 2 per hour, I got to go back and play. After the test was over I got to see the doctor and she said everything was fine and she was glad that I stopped vomiting but to keep doing the new medications to make sure that I do not start again. I got my next dose of chemo and went home. I was so-o glad to leave because it took most of the day for this visit and I get stir crazy having to sit in the hospital room all day, even the TV in there does not help sometimes.
My hair started growing back during my break from Chemotherapy while the doctors were doing the reassessment. Now, my hair can change drastically from the Chemotherapy. There was a story about a girl who had straight, brown hair that when her hair grew back in, it grew back blond and curly. Gammaw is holding out hope that mine will grow back in red but the new hair is growing in white blond. Its about a half inch in length and I brush it all the time. It will probably fall out like before because of getting Chemotherapy again but then maybe not.

Here's something to remember

This is something I read on my new friend Madison's website.....

In happy moments, Praise God
In difficult moments, Seek God
In quiet moments, Worship God
In painful moments, Trust God
In every moment, Thank God

This really touched mommy and hopefully you too!

I am getting to be sooo big

Well hello everyone!! At my appointment Friday I was such a big girl. I sat in the chair all by myself and pulled my shirt up for Nurse Maria to access my port. I would not let mommy help me at all!! But. . . . . . I got scared at the last second and mommy had to hold my hands but I still did it on my own ;> Gammaw came with me today and also my bubby and yaya (Nic and Garrett). I had to get a new CT Scan of my head. I usually have to drink the red stuff to make me go to sleep because I will not lay still in the big picture machine but today I laid down for Gammaw and did not have to drink that stuff, yeah!! Unfortunately that is where my cooperation ended. The CT Scan did not show anything to cause my vomiting so the doctor scheduled a different test. This time I had to swallow medicine so the doctors could see if I had any blockages in my throat but that came back clear as well.
I got admitted for my chemo cocktail and that all went fine but I got really sleepy this time and slept for almost a whole day. Another group of doctors came to see me and were taking all of mommy's attention from me and I did not like it. So I kept trying to interrupt them from talking. Those doctors decided to schedule another test for me to take after a week of new medication to make sure that my vomiting was not due to acid reflux and 'back-up'.
Well my next treatment is Monday June 1 so I'll let you know how it goes. Thanks for all the prayers and good thoughts.

Results from Reassessment

Hi everyone,
Well we have good news and some not so good news. The good news is that the tumor has reduced in size by 50%.

The not so good news is that the tumor is still wrapped around and attached to several of my vital organs, including my ovaries, urethra, bladder, colon and a hip muscle. So while the shrinkage is good and shows that the chemotherapy is working, the tumor has not shrunk enough around these organs to allow for radiation treatment or surgery. So to attempt to do either of these things could cause me permanent damage -- such as prevent me from entering puberty or be required to have a colostomy bag. So this is a minor setback in the treatment plan. My doctors decided that they will continue chemotherapy for six more weeks, and do another reassessment at that time.

So, please pray for me. Pray that the tumor begins shrinking away from these organs so they can do radiation therapy.

Also please pray for me because I have been suffering from "bubbles in my belly" (nausea and vomiting) for the past two weeks, even though I have not been getting any chemo. The doctors are running another CT scan on my brain Friday. They told mommy that the bubbles in my belly might be a result of toxicity in my brain from the chemotherapy, triggering this reaction.

Love and kisses to you all,
Amelya
PS the picture is from Mother's Day.

Quick Update

Hi--
Just to give you a quick update on what is going on, this past week I had my "reassessment" tests done. The doctors are trying to decide what they are going to do next, and they are suppose to tell mommy and daddy what the next steps will be next week. They are trying to decide if they want to do surgery or not, and when they are going to do radiation therapy, etc.

In the meantime, the doctors did tell us that the tumor has shrunk 50% -- that's right, it is half the size that it was when I first arrived at Children's Hospital. WooHoo!

Once we know more, we will let you know. Thanks for your prayers!
Amelya

Catching up ...

Hello Everyone,
Well, mommy and grandma have been pretty busy and haven't been able to help me to update you on what is going on since my last post. Just to update you on things, I got out of Children's Hospital Thursday, April 9th. This picture was taken the day I was released. I was smiling because I finally was taken off my "leash" (IVs) and free to roam on my own.

I have been getting my chemo each week and things are going pretty good. I have to admit that I am having more "grumpy" days, but I still have a lot of good days too.

Right now I am back at Children's Hospital. Monday was "Chemo Cocktail" day, and my counts were good so I got my treatment. I was suppose to come home today, but my stomach got upset, and I threw up. When that happens, I have to stay at the hospital for another 24 hours without throwing up before they will let me go home. Pray that I get to feeling better and my stomach settles down so I can eat and be able to go home.

Some Good Things I Got to Do
Easter Sunday was great fun for me... I got to spend the day with most of my cousins at my grandma's. We had a big Easter Egg Hunt -- see the pictures the below to see me and some of my cousins when the hunt started and we all took off looking for eggs. (Note the fun we had drawing with chalk on paw-paw's patio before the hunt!)

In the next picture, you can see all our eggs we found -- I was asking Ms. Margaret to help me open one of my eggs. In the last picture, I am showing daddy and paw-paw all the candy I got out of my Easter eggs, which I piled up in my skirt. They all thought it was funny... I just wanted to show them all the candy I got!! Notice that daddy has no hair, just like me. Daddy shaved his head when my hair fell out to be just like me. Paw-paw doesn't have any hair either. His has been that way for a while, so I guess he just lost all his hair just because he is paw-paw... he he he. Love you paw-paw!

Last week I got to go and pick strawberries. Mommy and daddy made arrangements with Ms. Heather's Strawberry Patch so we could go at the end of the day after everyone else left so I could pick strawberries. This is something mommy, daddy, my brothers and I get to do every year. It is a lot of fun.

Daddy helped me pick the berries -- I wanted to pick them all but daddy told me I have to look at them and pick the ones that are red and ready to be picked.

As you can see, we did get lots of big, beautiful, luscious strawberries!! They sure were yummy. Mom made me strawberry shortcake and boy was it good.

Well, that about wraps it up for now. That gets you up to date on the last two weeks, which I said was busy. I will leave you with my latest picture, me on the pink pony at the strawberry patch.

Thanks for all your prayers and good wishes. We will get a re-evaluation of the tumor in three weeks. We are all praying that the tumor will have shrunk even more than what the doctors expect. In fact while we are asking God, let's ask big -- that the tumor is gone!!!

Love and kisses to you all,
Amelya