Friday, August 8, 2008

Mia Grace Waller

My Mom Krystal Lala.....My "Jason" Jason Lane
My Dad Dave Waller


My Grandparents:
Sky Lala
Dina Lala
David Waller
Linda Waller

















Click here to view more pictures

http://picasaweb.google.com/Miagrace444
















This site was created to keep everyone updated on Mia’s progress/condition. Mia was diagnosed with Acute Lymphoblastic Leukemia (ALL).

After we received the news about Mia, family, friends, even strangers wanted to know how to help. We don’t know how long Mia will need help so setting up a non profit foundation in her name was a decision made by the family after consulting with a friend who is also an attorney.

No one prepares for catastrophes. No one wants to think about this ever happening to them.Most people don’t have a savings to cover expenses of this magnitude should something like this ever happen. Her mother is unable to continue her career due to Mia’s illness.

The Mia Grace Leukemia Foundation will help Mia and her family with expenses that are associated with her and her family, medical, groceries, gasoline back and forth to the hospital, electric bills, meals etc. Once Mia is taken care of, we hope to help out other families with children who are faced with similar situations.

The Mia Grace Leukemia Foundation has filed all the necessary paper work with the Secretary of State.

Prayers are the thing that we need the most right now.

Please let me introduce you to our little Mia Grace. You know how when you meet someone and just know that they are special? That’s how you feel when you meet Mia. Mia is a rough and tough active little girl. She loves to be outside, swimming, riding in a boat, gymnastics, riding her 4wheeler, running, climbing, loves the beach. She is not afraid of anything (a little dare devil). She just finished a gymnastics session. Her favorite things to eat are pizza, pasta & ice cream. She loves her new baby brother Mason (5 months). She is so proud to be the BIG SISTER! She is very sassy (4 going on 24). She also, has a very tender side to her. If you she doesn’t get what she wants, one of the things that she will tell you is "but I love you". We call her "little drama.


"Now that you know a little about our Mia Grace we thank you for visiting this site and we will keep you updated on her progress.

St Tammany News
http://www.thesttammanynews.com/articles/2008/09/17/news/doc48d102099ff6e303459812.txt

News clip from channel 6 WDSU
http://www.wdsu.com/video/17104588/index.html

July 28, 2008
Mia was brought to the doctor because she had been running a fever over the weekend. She had no other symptoms (cough, runny nose, sore throat). The doctor decided to check her blood work. She found that her red blood cells, white blood cells and platelets were low. She was anemic. The doctor thought that she may have a viral infection and to continue to give her Tylenol. She said to come back in two days so she could check her blood. Her blood count should be back up by then.

July 30, 2008
We brought Mia to the doctor to get rechecked (she was still running fever). After receiving the results from the blood work which was even lower than two days ago Dr. Geo said to go home a pack a bag. We needed to bring Mia to Children’s Hospital to do more tests. At Children’s Hospital they did some more blood work and physical exams. They noticed that her kidneys were enlarged. Dr. Singleton spoke to us about preparing for Leukemia. Tomorrow they will need to do a bone marrow biopsy & aspiration. This was a total shock! Our heathy very active sunshine of our lives may have CANCER!

July 31, 2008
Today was the day that turned our world upside down! Mia had a blood transfusion before the procedure which was done around noon. The doctor called for a family conference around 5:00pm to discuss the results. She informed us that Mia does have Acute Lymphoblastic Leukemia (ALL). She also told us that because of this disease Mia had neutropenia . That means that her ANC (absolute neutrophil count) is less than 500. This count should be 2100. Anything under 500 could be critical because her body can’t fight infections. She has been tired and weak which we now understand it was because her red blood cell count was so low it was not carrying enough oxygen from her lungs to the rest of her body. Dr. Singleton explained that she would have to go through an induction process (chemo & other medictions) which would last for the next 29 days straight in the hospital and continue treatment for the next 2 ½ years.

August 1, 2008
Today was Mia’s first day of chemo. She would undergo surgeries for a medi-port and a spinal tap. The medi-port is a small device that goes under her skin on her upper chest . The purpose of this device is to have a way to test her blood and administer IV drugs without having to keep sticking her. Mia would scream and cry when they would stick her to take blood or give her medicine. She would have to be held down. The spinal tap is to test her CSF to make sure there is no blast cells in her central nervous system (brain & spine). They also administered the chemo drug AraC through the spine to either kill any cancer cells and or to protect her from getting any. Mia came out of surgery grumpy. She was starving and wanted pizza!

August 2, 2008
Today they are just giving her Dexadron a styroid which she will receive twice a day for the next 6 days. Today Mia’s ANC was 50. She was very energetic and got to see her baby brother (Mason) for the first time in four days.

August 3, 2008
Today we had Mia’s birthday party she was happy but very tired. We all had to wear a mask in her room. Mason didn’t get to come because he had a cough. Mia’s ANC is 120 today.

August 4, 2008
Today Mia is getting a strong chemo in her leg called PEG. This chemo treatment has us all scared because they can’t give it to her without a nurse staying in the room for the first hour and a doctor on the same floor of the hospital. One of the things we are very scared about with the treatment is the side effects and allergic reactions that she may have. Mia is very tired acting today. Mia’s ANC is 130.

August 5, 2008
Mia’s 4th Birthday! Mia had a good day today. Her ANC is 250! The doctors think it will go down due to the chemo treatment (not good). She has had a big appetite. Her mom (Krystal) said she ate more than her today! This is due to the steroids that she has been getting twice a day.

August 6, 2008
Today Mia has been active but the doctors noticed her abdomen was a little large. They did a CT scan and it showed she was full of feces. The doctor is putting her on a stool softener. Her ANC 390

August 7, 2008
Today Mia is doing well. Her belly is still big because she hasn’t used the bathroom. Her ANC is 460. I told Mia about the kids selling lemonade for her and she wanted to know there names. I told her there names were Jessica, Joshua, and Page. She smiled and wanted to know why and I explained because she was sick and they wanted her to get better.

August 8, 2008
She had another bone marrow biopsy this morning which checks for the blast cells in her bone marrow. She received Chemo (Methotrexate) in her spine. She came out of surgery fine but really grumpy and hungry. ANC is 630. Now she can walk around in the halls without a mask on.

August 9, 2008
Mia has been having a hard time taking the Dexadron (steroid). This morning they give it to her and she vomited every where. We than tried it with some sugar water and succeeded. The doctor come in and told us the technician looked at the bone marrow and said he didn’t see any blast cells (leukemia cells). The pathologist still has to look at it and confirm it. He said she was doing very well. She has had a very good response to the chemo. Her ANC is 500.

August 10, 2008
Today Mia hasn’t had a good day. They had to draw blood from her first thing this morning. She also woke up every hour last night wanting to eat pizza. This is a direct result of the steroid she has been taking. Mia now has thrush in her mouth from the chemo she has been receiving. The doctors’ started her on some new medicine to resolve this issue. Her ANC is 550.

August 11, 2008
Today Mia has had a good day even though she stayed up all night eating again. They had to change her needle in her medi-port. She took it very well. The doctor came in today and told us Mia was doing so well that if her blood work comes back good in the morning we will get to go home. This is great news. We still have a long road ahead of us. There are three stages she has to go through: induction (29 days), consolidation (5months), and maintaince (2 yrs). This is to make sure the cancer stays in remission. They will let us know if she is in remission at the end of the induction process. Our little angel has gone from 97% leukemia cell to less than 5% if any in a week. We thank the doctors, every one for there prayers, and most of all our LORD. Today her ANC is 550. Today when the nurses & doctors would come in the room Mia would tell them “you need to go back to work and make some monies so that you can go to the store and buy something. We would tell me that when we needed to work and she would ask “why”.

August 12, 2008
Today Mia was very excited about going home. We waited & waited & waited! We were waiting on the final pathology report. It was confirmed that there were no blast cells! This was both exciting and scary. We were happy to go home & yet scared because we would be on our own without the security of the doctors. Her ANC was 580. We had alot of balloons that was given to Mia. We didn't have enough room in the car. Mia was asked if she wanted to give a balloon to another little girl she said "yes". We went to the front desk and asked if there was a little girl who might have had a bad day and the nurse showed us a little girl and Mia gave up her Hannah Montana balloon. That was real sweet!


August 13, 2008
Today was Mia’s first day at home. She was excited to be home. We had to get her use to washing her hands when she touched things. Mia doesn’t act like herself in the ways that she did. Her personality has changed and she has a very bad temper. The only things that seem to interest her now are food and TV. She sleeps a lot more now than she ever did. It was funny when she seen the bed all made up she said "that looks soft"and she climbed in and fell a sleep.

August 14, 2008
Today Mia finally got to see mamaw and papaw in her house. They have been coming to the porch and spending time with her from a distance because they had a cold. That’s the first time they have got to have contact with her since Friday.

August 15, 2008
Today we went to the clinic at Children’s Hospital for Mia’s scheduled chemo treatment. The first thing they had to do was access her port. This is not pleasant because she is still terrified of needles. They had to draw blood to get her CBC (complete blood count). Then the doctors came in to examine her and said she was doing great. We had to wait on her blood counts before she could get her chemo. When the blood counts came back they were good enough to get her chemo. They gave her the chemo (Vicristine) through her port. Then we were able to go back home and if everything goes well we don’t have to go back until Tuesday. Her ANC was 440 today which means she is neutropenic. We now have to take extra precautions because her body can’t fight off anything.

August 16, 2008
Today I’m writing as Mia’s Mamaw. Where do I begin? This has been a total shock for all of us. Let me just explain a little bit. We are a very close family. She has lived in our house for her first year of life. Now, both of my girls (Kasie & Krystal) live right next door in there own place with there own little families. I would see Mia just about everyday. We had felt that we were so blessed that our three kids were all healthy. About a month ago we (Me & Sky) were talking about how lucky we were and that Mia was strong and healthy, since, she was almost 4 years old. We still worry about the babies, Mason who is 5 months & Trent who will be born any day now. Mia our first grandchild has been spoiled rotten by all of us. She is so funny to talk to. The things that come out of the mouth of a three year old are just too funny. Two weeks before she got sick I had taken Mia and three of my nieces to a water park and she was the youngest one. But she is so active & rough that see stayed up with them swimming like a big girl (miss independent). She would tell me all day long “I love you Mamaw”. So imagine our shock and surprise when we heard the news. Leukemia? What is Leukemia? Cancer. What? We didn’t know anything about it. We have all learned a lot in the last couple of weeks. Jason has been wonderful through this whole thing. He has learned so much that he even surprised the doctors and nurses. Jason spent many hours learning as much as he could on the computer about ALL (acute lymphoblastic leukemia). With Jason there with my little girl (Krystal) he made us feel comfortable that he would be there for them. When Mia was in the hospital that’s all she wanted were her Mom (Krystal), her Dad (Dave) and her Jason (Jason). It broke my heart to see her being held down the take her blood, give her a shot etc. I had to leave the room. The medi-port has been great for her. This has been such a crazy experience my mind doesn’t stop. I think about her all of the time. The worries. The what if’s. The side effects. I even had a voice message from Hospice. Hospice. Why in the world would Hospice call? Our little Miss Mia isn’t going anywhere. I was shocked again. When Mia did come home we were able to see her, she stood on the porch and we were down the steps because we were sick. Mia looks so different she has chubby cheeks and a big belly. Her voice has changed. Her cute personality has changed. That’s all she thinks about is food. Steroids. Another shock. I have talked to a lot of wonderful people: people that I haven’t spoken to in years, family I barely remember, friends, coworkers, and strangers’ etc. that have told me that they are praying for her and have put her on prayer list. The outreach is unbelievable. Prayers. Thank you, thank you! She is in god’s hand and I can’t begin to tell you how grateful I am to all of you. Some people have told me stories of how they know someone with ALL and they are just fine now. They survived!! This has been such an inspiration; you just wouldn’t believe how much it helps. I now feel that this is going to be a long process but we can make it through this. Mia will survive!!! My Krystal, you are a wonderful mom, you always do what’s best for her and I admire you for staying strong and not dwelling on any negative thoughts.

August 17, 2008
Today Mia had a good day. Her Dad & Maw Maw Linda came to spend time with her. They spent most of the day in the kitchen watching Mia eat. Mia asked her Maw Maw Linda to make her some soup.

August 18, 2008
Maw Maw Linda & Uncle Bryan brought Mia soup today. She loved it. Mia went to her MaMaw & PaPaws to eat dinner next door. She was glad to finally get out of her house.

August 19, 2008 - Tuesday
Today Mia had to go to Children's Hospital to have her blood work checked. Her ANC is 250. Her blood pressure was high which concerned the doctor. This could be caused from the steroids. Mia may need to be on blood pressure medicine. The doctor wants it monitored. The doctor wanted her to come back everyday this week to have it rechecked. Krystal asked if it was ok to go to Mia's peditrician in Mandeville. The doctor agreed. Mia complains that she doesn't feel well.

August 20, 2008 - Wednesday
Krystal called the peditrician and made arrangements for Mia to go straight into a room instead of having to wait in the waiting room first. They took her blood pressure and checked her sugar level. It is not good for Mia to be around any sick people. Her blood pressure & sugar level were normal. Mia complains she doesn't feel well. She is always tired and sleeps alot.

August 21, 2008
Today Krystal had to take Mia back to the pediatrician to get her blood pressure checked. It was ok. Mia has been ok today but very tired. She has been complaining that her throat hurt but we think it’s just indigestion from all the red sauce she has eaten in her pasta. Mia is so different from the steroids; she has gained weight, she is mean, grumpy, and sleeps a lot.


August 22, 2008
Today we took Mia to the doctor. They had to access her port today to draw blood and give her chemo. Mia has developed a lot of red marks on her belly that we were concerned about. The doctor said they were stretch marks and they would go away. Mia has been so weak she can barely climb the stairs to get on the porch by herself. We told the doctors about this and they said it was from the steroid making her muscles sore. She will be off the steroid in seven more days. Yea! The doctor said that she should improve after the steroid gets out of her system. Her ANC was 640! When we got back from the doctor mom and ma maw took Mia to the lake front. Mia didn’t act too thrilled but they did get a few smiles out of her. It’s just she stays so tired now and it’s hard to motivate her. We hope and pray all this changes soon. We miss our little active girl that’s always ready for anything.

August 23, 2008
Today I will tell you some of my feelings. I am Mia’s Jason. Mia has been a very special part of my life. Krystal and I met about three years ago. Mia was one year old at this time. I fell in love with her as fast as I did her mom or sooner. I think of her as my own. I guess one thing that make’s her so special is the fact that I choose her. When you have a child of your own you just take what you get. With Mia I got to make the decision to take her into my life and it is the best decision I ever made. Mia is so special to me she has always been right by my side whenever I was doing anything especially outside. It breaks my heart to see her so weak right now. Mia is a very strong willed little girl. She’s not old enough to understand completely what is wrong with her but when you do tell her things she remembers. I told her the other day that her hair might fall out while she is sick and I didn’t think she listened until I heard her tell someone that her “hair might fall out but it would be ok because it would grow back”. Mia will fight this disease as hard as she can. Everything she has ever done she has had to take it to the next level. If she is swinging she wants to go as high as you will push her. If she’s on her four wheeler she wants to go as fast as it will go. I always wondered if she could feel pain because she would be climbing on something and fall hard and get right back up and do it again like nothing had happened. I think this is the way she will be with the leukemia; she will fight it off and go own with her life like it never happened. I have told Mia through this whole process that if she has any questions at all to just ask and I will tell her. We don’t want her to think that we are hiding anything from her. If she begins to think this she could get depressed and separate herself from us. When the doctor told us that Mia had leukemia there were so many things that ran through my head. It is bad to hear that anyone has a life threatening illness, but to hear that your baby girl that you read books and sing songs to every night has one is another thing. I made a decision to be strong for Mia and not show my emotions around her. I didn’t understand exactly what leukemia was so I spent a lot of time studying it. I guess this was another way of me coping with it. This is a heavy burden on our family but we are a close family and with us and every one praying for us we will get through this. About a week ago when we had just got home from the hospital Mia woke up and told her mom that there where angels standing by her bed. You can’t be completely sure about what she seen, but coming out of a four year old this gives me a feeling of relief.
Krystal and I would like to thank every one for all the things that you have done for us. We greatly appreciate all of you and we hope that we can help others when we get through this ourselves. This experience has changed the way I look at things. It makes the small things that you did worry about mean nothing. All I want now is for my baby to get better. Today she was hurrying to the door to catch her Uncle Kody and fell down on the floor. It breaks my heart to see her this weak. I wish I could trade places with her and do it for her. I know that isn’t possible besides she is a much stronger person than I am. I want to ask every one to keep her in your prayers and please put her on your prayer list at church and ask your friends to put her on there’s.

September 29, 2008

This is Mia’s mom, Krystal. I apologize for not updating this blog sooner; however a lot has happened since our last entry. Unfortunately, due to Hurricane Gustav and Ike we were unable to keep this current. I will try my hardest to keep you posted of our progress. At this point, due to our news that you will read below, we will update you on a weekly basis.

August 28, 2008 Mia stopped taking steroids! We are really happy that she no longer needs to take this medication at this time. Unfortunately, she will be put back on it throughout this treatment process.

August 29, 2008 was Mia’s last day of induction. She had to have a spinal tap (they put chemo in her spine to reach her central nervous system). She also had a Bone Marrow Biopsy. This was her last one for the induction period. It will determine if see is in remission. This was a very stressful day. My Twin sister Kasie was in the hospital giving birth to my nephew Trent and I wasn’t able to go because I needed to be with Mia. Mia needed to have a blood transfusion that night so Dave & Jason stayed with Mia while I went to see Kasie & Trent in the hospital. Mia didn’t get home from the hospital until 1:00am.

The next day I packed our things and evacuated to Alabama. I didn’t want to be stuck in traffic on the interstate with two kids. This was really scary, as we had many things to consider before making our decision to evacuate. With Mia’s illness we had to be sure that she continued to receive any treatments she may have needed while we were away. Fortunately, we were advised that there was a Children’s Hospital in Birmingham
Alabama, which was approximately 1.5 hours from where we decided to stay.

We returned home five days later without Mia needing any medical assistance while we were away. HOORAY!!!

I called the Hospital when we returned and they said Mia is going to have a two week break in her treatment. Dr. Singleton wanted to have a family meeting. It was in this meeting that she gave us wonderful news that Mia was now in “REMISSION”. (Remission means she is currently cancer free). Even though Mia is in remission, she will still need spinal taps and chemotherapy for the next 2-1/2 years. She is currently taking chemotherapy in a pill form daily; however, they will not be removing her port until this treatment is complete. This month, Mia needs a spinal tap weekly which provides the medication directly to the spinal area which can not be treated by the oral chemo that she takes.

On September 17th, Mia made her front page newspaper debut. Please see: http://thesttammanynews.com/articles/2008/09/17/news/doc48d102099ff6e303459812.txt
She is such a doll.

Thursday of last week, Mia was running a fever of 100.9. We were advised that anything over 100.4 we were to call the hospital to let them know so they could be ready for Mia to arrive in the Emergency Room. She was treated (blood work and antibiodics) and then admitted. We were later told that it is common for children with Leukemia to return to the hospital periodically due to running fever and infections because of her body not being able to fight them off. She had to go 24 hours fever free before she could go home. After four days, we were allowed to return home, as she is now feeling better.

Her ANC and her blood count are stable and good.

Mia is finally returning to her old self. She is back in the asking question stage – “But why momma?”.

We would like to once again, thank everyone for their continued support and prayers through this major adjustment in our lives. Hugs.

If anyone is interested in making a donation, please visit one of the following banks or send to "The Mia Grace Leukemia Foundation" P.O. Box 969 Lacombe LA 70445

Application for 501 (c) 3 is pending

Capital One
Parish National
Resource
CPB


A special thanks to:
Lisa Maddox
Richie Toal and his family
Kristen Davis
Antonio Lemon

11 comments:

Anonymous said...

HEY MIA,JASON AND KRYSTAL:

I LOVED THE WEB SITE. MISS MIA IS SWEET AS EVER. LOVE YOU ALL,
TAMMY

Anonymous said...

I would very much like to do a story about Mia Grace and the foundation, but don't know how to contact you. Please call at your earliest convenience: Anne Lautzenheiser, St. Tammany News, 649-0253.

Thank you!

Anonymous said...

Hey! We have been keeping up with Mia's progress with this cool website. I am so glad that she is getting to come home and that we hadnt stopped praying. We love you!

Amy, Randy, and Wyatt

jamie g. said...

hey mia
you are the most adorable little girl in all the world. ima still be praying for ya love!!! and the rest the family as well, love you guys!!! jamie g.

Aunt Sunday & Uncle D said...

To our Lil Mia Grace, we miss you so much, and are very sad that we have not been able to come see you. I pray for you and for Uncle D, you will survive and have a happy life, Uncle D won't because the doctors can not fix his cancer. But he sends his love, and hopefully soon Aunt Sunday will be able to visit and bring your birthday present that has been at my house, waiting to be given to you. We love you with all my hearts
Aunt Sunday and Uncle D

Anonymous said...

Love the website. Mia, you are a very beautiful little girl. My family and I are praying for you and your family.
Hope you get better soon.
Maria

Anonymous said...

Mia,

I went fishing with your daddy a while back and he told me about his little Mia Grace. We laughed about our little girls, you see I have a Katie Grace at home. Get well soon so I can take you and dad fishing and make a some new memories for us all.

Anonymous said...

BEAUTIFUL LITTLE MIA,WE ARE SO GLAD TO HERE YOU ARE DOING WELL. WE CONTINUE TO PRAY FOR YOU DAILY AND CONFIDENT YOU WILL BEAT THIS DISEASE. RMT&PMT

Reba said...

Hey Mia,

Keep strong Baby Girl! we are all pulling for you, we know your strong and can do it, you come from strong roots.

we all love you!

My Girls say "HI!" and wear orange everyday for you sweetie.

Anonymous said...

Being strong
cannot be wrong,
If you belong to a family
that is loved.

The strength you have
gives strength to others,
inspiring love
in a world thats scary.

So thank you Mia Grace,
For what you have
and have not done,
what you will do in this place.

Adam Hoffman

Claire said...

I run a blog and have posted Mia Grace's story. My daughter's name is Mia as well and we live in Madisonville, my Mia is 3! I am going to rally the mom bloggers to see what we can do!!
http://singlemommeltdown.blogspot.com/