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

Still at Children's Hospital

Hi everyone,
Well I thought I would get to go home today, but it looks like I will be at Children's for at least a few more days. Today my white cell count was low -- almost no white cells at all. The doctors are giving me some different medicine to try to get my counts up higher.

In addition, I have sores in my throat, making it hard for me to drink or eat. The doctors are giving me some new medicines to take care of that. They really want me to eat. I am trying but it is hard.

I know Daddy was disappointed that he couldn't bring me and mommy home today. But we did get to play together all day. I sure did have fun playing with him.

I will let you all know how it goes, and when I get to go back home again. Soon I hope -- I miss my brothers!

Love and kisses,
Amelya

Not Feeling Too Good Today

Hi Everybody,
Well, I am not feeling too good today. Early this morning (4am) I woke mommy up because I had a fever. Mommy said my fever was 102F. So mommy and daddy brought me back to Children's Hospital.

The doctors are not sure yet why I have a fever, but my temperature was back to normal this afternoon. Maybe it will stay that way.

In the meantime, they did decide that I needed more blood. So I got some blood this afternoon. This makes the 4th time I have gotten blood since I was diagnosed in February. Again, thanks to all of you who have donated to make sure that I have the blood I need!

The doctors said that I can still get my chemo treatment tomorrow, so that is good.

If anything changes, I will let you know. Thanks for all your prayers!
Love,
Amelya

No April's Fool ...

Hi everybody!

Yep, its no April's Fool here -- I am home again. I got my "chemo cocktail" on Monday night, and was released from Children's Hospital late last night. I am doing well and the doctors say my blood counts are good. As you can see, I am feeling pretty good today too! I am in the yard with my brother Nic. I was blowing bubbles and just having a good time playing with my brothers who just got home from school.

Thanks to everyone who has given blood on my behalf!
I really appreciate that you have taken the time to go to one of the Blood Mobiles or going to the Blood Center to donate on my behalf.

Best wishes and kisses,
Amelya

I'm in the hospital again

Hi everyone,
I got my chemo treatment last week and this week. But on Tuesday I got a fever and the doctors said mommy and daddy had to bring me back to the hospital. Since I have been here my fever broke and I haven't had a fever since Tuesday night.

While I have been sleeping alot, I also got to go to the play room and play with the other kids here at Children's Hospital. I am on a floor where all the other kids have cancer like me, or have sickle cell disease. I have made a lot friends here.

The good news is that the doctors say I might get to go home today. Yea! But before I go, I am going to a party sponsored by Sunshine Kids. I will get to "build a bear," play games and do crafts and all kinds of fun stuff. My brothers are coming to the hospital to go to the party with me before I am discharged to go home.

Love to you all -- and pray for me and all the other kids here at Children's Hospital!
Amelya

P.S. Don't forget to go give blood at the Blood Mobile in Baton Rouge Friday and in Hammond on Saturday. It will not only help me, but all the other kids here at Children's!

Blood Mobile in Hammond and in Baton Rouge

Hey Everybody!
Mommy's work is sponsoring a Blood Drive for me!

In Baton Rouge,
you can give blood at the BloodMobile at
H&R Block
9540-4 Cortana Place,
Friday, March 27th from 2pm to 7pm.

In Hammond,
you can give blood at the BloodMobile at
H&R Block
2255 W. Thomas St,
Saturday, March 28th from 10am to 2pm.

I hope you can come to the BloodMobile and donate for me. I have already had to have two blood transfusions, so I will need your help.
If you can't donate, ask others to come and donate -- all blood types are needed!
Love to you,
Amelya

Another Chemo Treatment - Done!

Hi everybody,
Last week was going well until I woke up on Wednesday morning and the sore on my thumb was looking pretty bad -- and really was starting to hurt me. I actually smashed my thumb a couple of months ago, and it has never really healed all the way. I ended up having to go back to Children's so they could look at it. They gave me more medicine and finally I was able to go home Friday night.

On Sunday family came over and we had a barbecue. While I had to wear a mask while all the family and my cousins were there, I didn't care. I got to play with my cousins and I had fun. Here's a picture of me that night -- can you tell I enjoyed the bbq chicken?

On Monday I got another chemo treatment done. This week was the big one, or the "chemo cocktail" (3 chemo drugs). On Monday I was admitted and got my "cocktail." I got to go home Tuesday night. This was my shortest stay at Children's yet.

While I get really tired easy, I am doing okay. I hate having to take all the medicines I have to take -- they taste yucky. Mom tries to give me treats and stuff to make it better, but I really just don't want to take them.

Continue to pray for me -- and thank you for your love and concern, and all the prayers you have said for me.
Love to you all,
Amelya

Third Time's a Charm

On Monday I got my third dose of Chemo and it all went smoothly. My counts were good and I did not complain too much with all the poking and prodding they had to do. I really hate when Dr. Gardner has to measure my tumor from the outside. But the good news is that it is getting harder for her to measure because the tumor is getting softer and less defined.
TTFN! I luv you!

PS -- I added a picture of me with my Mom, Dad, and brothers Garrett and Nic. We took this pic the same day Aunt Elizabeth and Uncle Len came over. Can you tell that I LUV my pink plaid dress and wear it as much as I can?
Love to you all! Amelya

Visit from La Wildlife and Fisheries

Hi again everyone!!

I got a visit from my Uncle Len and Aunt Liz on Sunday. They brought me a special gift. Uncle Len and his friends at the Louisiana Wildlife Association have decided to give me a check for my care in my fight against cancer. My uncle is a Captain in the Louisiana Wildlife and Fisheries and came all dressed up in his uniform to give me a check from the association. I was kinda scared to see him in his uniform and had to get used to seeing him dressed that way, hopefully the bad guys feel that same way when they see him too.

Blood Donations

Want to help?

You can help me by going and giving blood.
I am going to need more blood and blood product transfusions while I strive to beat my cancer.

I am B+, which means I can only receive blood products from certain people. So, if you can, go give blood at your local blood center. Just say it is a Blood Replacement for Amelya Holland at Children's Hospital in New Orleans, LA.

The blood center will test your blood to see if you are a match for me. If you are a match for me then the blood bank will compile a list so my doctors know all of the available donors for me. For more information on giving blood and blood products, see the link on the left.

Please go in and donate either blood or platelets. And, please, even if you are not a match for me, you may be a match for another person like me, who desperately needs blood.

Home again

Well we are home again, yeah!! In the past couple of days I have been through many and tests and procedures to make me feel better. On Monday I recieved a hemogloban transfusion because my counts were down. In order for me to get the transfusion I have to get fluids and a mix of Benedryl and Tylenol. This combo makes me really cranky and I was very unhappy about all the people fussing over me in order to prepare me for the transfusion. The transfusion takes three hours to complete and I fussed for the first two hours until I was so exhausted that I fell asleep.
On Tuesday my platelet count was low and so I needed to get a platelet transfusion. My mummie could not understand why my counts dropped the way they did but the doctors told her that this was just how it happens. The Chemotherapy attacks my fastest growing cells going from the fastest to the next and so on. Once its brings one down it goes to the next so that is why my counts dropped like they did. My platelet transfer went much smoother and I was asleep only 30 minutes into it. Later on I got my second dose of Chemo. I got an ultrasound to check the function of my kidneys and my bladder. I really hate being held down but after I let everybody know that, I calm down and watch what is going on and even try to help.
On Wednesday I had an upset stomach and could not keep my breakfast down so the doctors gave me some medicine that calmed my stomach down and made me sleepy. The big thing that happened to me today is that I began to notice my hair falling out. I hate how I keep getting it into my mouth but mummie helps me get it out and even brushes my hair to help catch it before it can fall on my face. At rounds my doctor, Dr. Gardner, told me that going off the measurements from my first ultrasound at Children's Hospital and the one I had this morning there was a 30% difference in size. Dr. Gardner said that they would know for sure by tomorrow. The doctors are concerned about my thumb, (I smashed it in a door at home two months ago), that has still not began to heal even though I have been on antibiotics for two weeks so she ordered a x-ray and began a much stronger antibiotic to try to help my thumb heal.
On Thursday, my counts were still up so I did not need anymore transfusions for now. The doctors told me that my bone was not infected so I could go home for the weekend!! Also Dr. Gardner came by and told that the exact number of shrinkage of my tumor was 33% and she was so happy and suprised. Well I now have lost another pound so now I have lost 4 pounds since this has all started a month ago and Dr. Gardner wants me to try to eat as much as I can while I am at home so I do not lose anymore weight. The problem is that the Chemo has changed my taste buds and now I do not like anything that I used to so I do not want to eat. Mummie and dada have tried to give me all kinds of different kinds of food but the only thing I have eaten was a Strawberry All Fruit bar. I put it in a cup because it is soo big and then I eat it as it melts. This makes the nurses happy because at least I am eating something. I got to go home and I was so happy to see Ya-Ya (Garrett) and Bubee (Nic) and I gave them big hugs and kisses.
I have discovered that I like cheese still so I ate cheese and juice for dinner. My mummie was so happy to see me eat that she let me have a treat of Robin Eggs after I finished.

Amelya Gets a Haircut

Hi Everybody!

On Saturday, Valentine's Day, mom and grandma took me to get my first haircut. The people at Children's Hospital said it would be a good idea if I got my hair cut shorter so I could get use to that.

I went to Camellia House in Hammond and Ms. Leanne cut my hair. As you can see in my picture she really did a good job. They cut several inches off my hair. Grandma loves my new haircut and so does everyone else. What do you think?

I really did not feel too good that day, and the ladies at the hair salon tried to cheer me up. The owner brought me chocolate covered strawberries. When I got home I ate two of them -- considering that I have not been too hungry lately, that is a lot for me. You know what else they did for me? They told mom that my haircut was free and that if I needed to get my hair cut again, just come back and it will be free. Mom and grandma were pretty surprised and grateful about that.

Sunday I was really not feeling good at all and I had a fever of 100.5 which meant I had to go back to Children's Hospital. They admitted me again, and that is where I am now (Monday, 2/16). They are not sure why I was running a fever, but they gave me antibiotics and said my blood count was low. They are going to give me a blood transfusion today. I have not run any fever since 4am this morning, so maybe I will get my next dose of Chemo tomorrow. Hopefully I will get to go home soon after that. I really do feel much better now, back to my old self.

The doctors said I will have to get Chemo for 39 weeks. So every week I will go to the clinic and get my Chemo. Every third week I will have to stay at the hospital for a couple of days so they can run tests and see how much the tumor is shrinking.

My great grandmother started a prayer email and everyday I was in the hospital she sent scriptures to family and friends to read and pray for me.

Bye Everybody and Love to you,
Amelya

Amelya's Story

Hi-
My name is Amelya and I am two years old. Two weeks ago today the doctors at Children's Hospital told my mom and dad that I had a tumor and it was cancer. This blog is to tell all my family and friends about my story. The picture you see of me here is last Thanksgiving. I was hamming it up for grandma so she could take my picture.

The last two weeks have been very busy, and sometimes frightening. The next day after I was admitted to Children's Hospital, they did a biopsy of my tumor. They also in the following days, did all kinds of tests and took all kinds of pictures. Of course I did not like it one bit and the minute a nurse or doctor walked into the room I would get scared and run for mom or dad. Lots of times I am hurting and it took a while before the doctors found the right medicine to make me feel better.

The fun things that I got to do while at Children's Hospital: everyday someone would come to my room and bring me a new toy. My Uncle Mark brought me a great big teddy we decided to call Pinky. He slept with me every night. Aunt Michelle surprised me and decorated my room with banners and window stickers while I was getting a test done. The ladies at the hospital would also come to my room and bring me toys and books to play with. One day a Mardi Gras parade came to my room. They marched down the hallway, threw beads and played horns and drums.

I also got to go to the play room where I painted, glittered, played bingo, and played with the kitchen set. I really liked it very much and busied myself shopping, putting groceries away, cooking and cleaning. While I was in the play room, I met other kids who became my friends. One boy, Joshua, would come and visit me in my room until he got to go home. One day while at the play room I painted a picture with daddy. My favorite color is purple. Next favorite is pink and then blue. Aunt Linda, grandma says I did my first study in color with that painting.

On Wednesday, this girl named Amanda came to Children's Hospital and did a concert. She is 18 years old and played the fiddle. She played cajun music (which pawpaw especially enjoyed) and talked about how she started playing music. Mom, dad, brothers Garrett and Nic, along with grandma and pawpaw went to the concert with me.

Just so you can see us all together, this is a picture is of me and my two brothers. The oldest is Garrett, and then Nic. This picture was from Thanksgiving Day also. As you can see Garrett likes to ham it up for the camera too. Nic just wanted to hurry so he could go do something else.

On Thursday, February 5th, the doctors told mom, dad, grandma and pawpaw that I had Rhabdomyosarcoma. It is a soft tissue tumor that is very fast growing. Mom and dad think that I have only had this for about two months based on changes in my behavior. It has already grown so big that it fills my pelvic area. The good news is that it is not in my bone marrow, so all we have to deal with is the tumor. The form of Rhabdomyosarcoma I have is very treatable. It occurs most often in children ages 1-5. The doctors plan to use chemotherapy and radiation later on. They may consider removing the tumor later when it gets smaller, but they said that they think that they can get rid of it using chemotherapy and radiation.

I got my first dose of chemo on Sunday (2/8) early in the morning. I had to stay in the hospital a few more days before they decided I could go home. I finally got to go home on Wednesday. It was great to be home again.