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Meet Erika – Leukemia

Meet Erika – Leukemia

Erika was born a fighter. Having an extra chromosome, I believe, does that to you. She had some difficulties right after she was born. She had to have surgery to repair a duodenal stenosis and had to be tube fed for a while. She overcame it all. She took her time learning to walk and talk, but she accomplished that too. She attended daycare and preschool and now school along with her typical peers.

Erika is a sassy little diva. She loves to dance and sing and she loves to be on stage. She still loves Elsa from Frozen, but she also loves Teen Beach Movie and High School Musical. She’s fond of Daniel Tiger Neighborhood and Sofia the first. She loves playdoh and painting and coloring as well. She likes to listen to Kidz Bop. She also enjoys playing with her dolls. She enjoys going to the park and swimming. She loves to read and play games like Mario Kart.

We were devastated when she was diagnosed with leukemia on May 27, 2017. We live in Valdosta and we have to travel to Jacksonville (2 hour drive) frequently for her treatments, blood and platelet transfusions, etc. So far she’s had to be hospitalized twice for fevers and once for seizure-like activity. All of her chemo is done in Jacksonville. We are getting ready to enter the next phase of her treatment. She will need inpatient chemo for 2-4 days.

We have gas and now car maintenance expenses because our car needs a new set of tires. We are glad to have the Ronald McDonald House helping us with lodging though. Our lives have completely changed and I am unable to work because I’m caring for my daughter, but I wouldn’t change it for anything.

Because I’m traveling so much with Erika, I have missed out on spending time with our other two kids. I feel like I’m disconnected with my teenager (more so than normal), and my baby girl is feeling left out, but, I try to make it up when I’m home and try to spend time with them when dad is home. Erika has only been able to go to school a handful of times since school started the beginning of August, she’s either been in chemo or too weak to participate. We also have to watch her ANC numbers. If they are below 1000 we have to keep her at home due to her extreme susceptibility to getting sick.

Even with all we have been though, I believe that she will overcome this because she was born a fighter!

Hope session by Whigham Images | Facebook | Instagram

Meet Courtney – Acute Myeloid Leukemia

Meet Courtney – Acute Myeloid Leukemia

Courtney is very spunky. She has quite the sassy girl attitude and loves to laugh. She is will always tell you what she is feeling and thinking and she is not afraid to do just that. She loves to dance around in dresses and be a princess. She is a total fashionista and loves to go shopping with mom and match her outfits for the day. She also loves to drag race with her daddy. She can’t wait until she is old enough to have her own jr dragster.

A routine doctors appointment turned into something serious. On March 8th 2017, our sweet and sassy Courtney was diagnosed with acute myeloid leukemia or AML. She has had 4 out of 5 chemo therapy treatments. Each chemo therapy treatment requires at least 30 days in the hospital. She has all the typical symptoms of chemo like nausea, tiredness, soar muscles and joints, swollen gums.

This cancer diagnosis has definitely changed our family. We have a lot less time as a family of 4 to spend together. My husband has been using his vacation time to take an extra day off every week to be able to go up to the hospital and be with her for 3 days a week while I go home and spend some time with our 1 year old son. While my husband works we have had to find a babysitter for our sone as well.

It has also changed things for the better. We cherish every moment we get to spend together and we are always looking to go out and do fun things. We have also decided that once this cancer diagnosis is over we are going to travel and experience things. Watching the Discovery channel is just not good enough anymore. We want to be there in the moment and experience first hand new cultures and places.

Courtney’s support page

Hope session by Gina Y Photography | Facebook | Instagram

 

Meet Olivia – Acute Myeloid Leukemia

Meet Olivia – Acute Myeloid Leukemia

Olivia is a triplet so at around age 2 1/2 I started to see a decline in her activity level while playing with her sisters. She was also falling ill frequently and developing frequent, rare infections that no one else in my family was getting or had. We had spent an entire summer trying to figure out why the sudden change in health and getting to the bottom of what was wrong with her. On August 4th of 2011, we finally heard the words no parent ever wants to hear… “Your child has cancer.”  Olivia was diagnosed with Acute Myeloid Leukemia or AML that day.
Olivia started treatment fairly quickly after diagnosis and spent many, many months inpatient at her hospital. She endured 7 months of chemo and developed some infections. She hit some unexpected bumps in the road and went through some really horrible things at such a young age, but did it all with a smile on her face. She was young and didn’t really understand what was going on with her but she knew she was sick. She was so sad to be away from her sisters. From very early on in her diagnosis we explained everything to her and just kept telling her she has to be strong. So her motto through it all was to ” be brave & stay strong”  And that she did!
I feel this experience has truly changed us all as a family. It has absolutely made Olivia grow and mature by leaps and bounds. It taught us that life is precious and that we as a family always need to be strong. We are also there for one another, no matter what, and to appreciate even the smallest of things.
As of this past winter we celebrated Olivia’s 5 year remission. A day that we have hoped and prayed for for a long time. She is now an amazing, happy, funny, gymnastics loving, 9 year old girl who loves puppies, owls, to sing, make musicallys and hang with her family and friends. We are so proud of the young girl she is growing up to be!

Hope session by Buatti-Ramos Photography | Facebook | Instagram

 

Meet Haley – Leukemia

Meet Haley – Leukemia

After a few sore throats and fevers, Haley was diagnosed with Mixed Phenotype Acute Leukemia or MPAL on November 14, 2014. MPAL is a combination of both cute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML). This type of Leukemia is rare and usually affects adults but can present in anyone. It can be a bit harder to treat since there are two different types of Leukemia cells present. This is Haley’s second time having Leukemia. She relapsed on June 9, 2017 and she needed a bone marrow transplant.

Haley’s six year old brother, Jaylen, was her match. As you can imagine transplant day was a very long day that was full of emotions. Haley’s parents were full of nerves having both of their children undergoing procedures on the same day but the word of the day was most definitely COURAGE.

It started with Jaylen.  For being only six years old I have never seen such bravery.  He was determined to not show an ounce of fear. He was incredibly courageous leading up to his donor procedure and his parents showed immense composure until he was lead back to surgery. I gently excused myself and let them have their “moment” together. I simply could not let myself invade their privacy. It was simply too raw.

Haley has a spunk and sass that is completely endearing.  This is not her first rodeo and she knows what is coming.  She is brave, courageous, strong and smart as a whip.  You aren’t going to pull one past this one.

The mood of the day was one of celebration that Haley was receiving what could be her life saving transplant.  But underlying of course was that element of knowing that Mom & Dad have two children that were going to be suffering because of it. Jaylen came out of his donor procedure hurting. It took him much longer than expected and in pain. Of course there was also the knowing that this was the beginning of a very long a hard road for Haley.

Oh yes… and interesting fact.  This all happened on the day of the eclipse.  I truly believe what happened that day was far more important and life changing than and eclipse of the sun!

Hope session by Dawn Carlise Photography. Facebook

Meet Luke – Acute Myeloid Leukemia

Meet Luke – Acute Myeloid Leukemia

Luke is the happiest and most fun little boy ever! He has the cutest personality and is such a sweet and loving child. Just about anything makes him laugh and he LOVED flirting with all of the nurses when we were in the hospital. He absolutely LOVES mickey mouse!

At Luke’s one year hold appointment in June of 2016, the doctor discovered that he was slightly anemic. At that time no other symptoms of leukemia were present. Just a few short weeks later, he started having bruising all of his body and petechiae on his face and stomach. On July 12, 2016, he was diagnosed with Acute Myeloid Leukemia or AML. AML forms in the blood cells or bone marrow and can progress rapidly.

Luke has been through 3 rounds of intense chemo, each lasting several days with 3 or more chemo drugs per round. Luke also underwent a bone marrow transplant from an unrelated donor on October 26th, 2016. After his bone marrow transplant, he was in the hospital until December 1st. He was not able to have any visitors except for me (his mother) and his father. His two older sisters were not able to visit him which was very hard.

Once discharged on December 1st and even still today, Luke remains in social isolation. He continues to have to wear a mask if we do get to go anywhere. Up until the past month, we were not able to even take him into a store to do grocery shopping. Today, we can take him to eat at a restaurant but only at off eating times (ex. 4 pm) or to a grocery store during non busy hours. He is not allowed to be around a large group of people, especially children for quite some time still and will not be able to go back to daycare until at least 1 year post transplant.

Childhood cancer has definitely changed our life! We have learned how to live a new “normal” life. When Luke was in the hospital from the date of diagnosis until late September 2016, and then again from October 19th to December 1st,, our family has had to juggle hospital life as well as caring for Luke’s two older sisters who are currently 5 1/2 and 4. With Luke being on social isolation, our family rarely gets to go places together and do things as a family or experience what other younger children get to. Since Luke’s transplant, he has done exceptionally well and continues to fight!

Luke’s support page

Hope session by Lindsey Rabon Photography | Facebook | Instagram

Meet Jillie – AML

Meet Jillie – AML

Jillie is the oldest of 5 kids and has never met a stranger because she makes friends wherever she goes. She was active in 4H as secretary and raising rabbits. Jillie was in all pre AP classes as a sophmore. She was planning to graduate with both her high school diploma and her associates degree. This girl is not intimidated by anything, including Acute Myeloid Leukemia or AML.

AML affects the myeloid cells of the blood and accounts for 20% of leukemia patients.

Jillie was diagnosed with AML on November 14, 2016 after being excessively tired and experiencing nausea. She then spent 145 days inpatient without being released. She transfered to the hospital school and maintained her advanced placement studies. This girl took the pediatric floor on and made amazing friends!

Being surrounded by so many amazing people led Jillie to choose her career path; pediatric oncology nurse! Her graduation options have changed but her goals have not. Currently Jillie is in remission, going to church, watching baseball games, playing with her 4 younger siblings and enjoying life! Cancer has changed Jillie’s life and the lives of her 4 little siblings and myself. It tried to break us, but just taught us how to bend.

 
Hope session by Dotka Photography |  facebook