Kylie is a beautiful and rambunctious 4 year old who was diagnosed with Acute lymphoblastic leukemia (ALL) in July of this year. She is the daughter of Heidi and Daniel. She is also the youngest of 3 kids; Isa (10) and Carson (8). All three kids are homeschooled by their mom, Heidi.
Kylie is not my daughter, but she is like one of my own. My daughter, Finley, and Kylie have been friends since they were born. They are only about 6 weeks apart and act like sisters.
This is Kylie story…
In September 2012, Heidi and Daniel approached our family with an opportunity. They were moving to Chattanooga, TN. to start a church and wanted us to join them. Our initial reaction was thanks but no thanks. But within a few days we knew God was calling us to go with them. In January 2013, our families moved together and in September we had our first weekly service, with Daniel being the lead pastor.
Shortly after the move, Heidi and Daniel shared with us that they were starting the foreign adoption process. They were quickly matched with a 5 year old boy in Uganda. Over the next year they did all of their paperwork and finally in March they received their court date. Heidi and Daniel quickly packed and jumped on a plane to Uganda to get their son. Daniel was gone the first 2 weeks, but then needed to return to the states. Not expecting the process to take so long, Heidi stayed back in Uganda with their son. Over the course of 8 weeks, they went to court hearings and doctor’s appointments. Things were going well, and they were in the last stage of receiving his visa. Through some investigations, things began to quickly come undone. Heidi had to make the hard decision to come back home while they waited for the visa. She arrived home the Saturday before Mother’s day.
While she was gone, Kylie began to not act like herself. She is normally a very high spirited and independent child. She began to cry for her mommy, which was understandable since her mommy had been gone for so many weeks. Then at the end of April, she spent the night at our home for my daughter’s birthday. That night she came down with a virus and began throwing up. We kept her with us through the night just thinking it would pass. The next morning she continued to get sick and didn’t seem to be getting better. We all just thought it was a virus and would pass in a day or so. A few days later, Heidi returned home. Once Heidi was home, Kylie became very attached to her. She hated to leave her side, which is to be expected after her mom had been gone for 8 weeks but was unlike Kylie! Any time Heidi would leave her side she would get very upset. Initially everyone dismissed the behavior as missing her mommy. Over the next 2 months, Kylie continued not to act like herself. It was starting to get past the point of just missing mommy and getting readjusted. And Heidi began to worry that something else was going on.
In mid June, Heidi and Daniel received word that they would no longer be able to adopt their son. At the same time, Kylie began to run a fever; she was bruising easily, and was always tired. Heidi initially thought she might just be anemic and had a virus. We were approaching the 4th of July and they would be going out of town on a family vacation. During a play date Heidi was telling me about how Kylie was acting and showing me the bruises. I suggested she take her to the doctor, just to make sure. The blood work would take some time and should be back by the time they got home for vacation. Heidi said to me, she thought it might be something more serious then anemia. Due to the holiday and schedules, she was not able to get Kylie into the doctor and had planned to take her once they got home. They left for the beach that Sunday.
On Monday night I called Heidi to ask her a question, and she told me how tired and lethargic Kylie was. She normally loves the beach, and all she wanted to do was sleep. She also had little red dots all over her skin, like she had been poked with a needle. Heidi called her dad, who is a doctor, and he told her to take Kylie in the ER first thing in the morning.
They next day I woke up to several text messages from Heidi. The first came in late Monday night saying they would be taking Kylie to the ER. The next came early that morning that they were on their way. Within an hour of getting to the ER, the doctor was preparing them for a leukemia diagnosis. Her initial blood work came back negative, but all her symptoms pointed to leukemia. They transferred Kylie by ambulance the Children’s Hospital in Orlando. They stabilized her and gave her several blood transfusions over the next few days, and then next day a bone marrow biopsy was done. This would tell them immediately is she had leukemia or an auto-immune disorder. The biopsy confirmed it was leukemia. The next day they found out what kind, ALL.
Kylie was then transferred back to the Children’s Hospital here in Chattanooga, where she spent the next 3 weeks. She had more blood transfusions, almost every other day. They did another bone marrow biopsy to determine how much leukemia was in her body and they put in her chemo port. The biopsy came back with 85% leukemia blast cell in her bone marrow. The doctor’s immediately started her on chemo and would do a spinal tap chemo every week during her first round of treatment.
At the end of her first 5 week treatment, they did another bone marrow biopsy. We were all praying for a low blast cell count. The test results came back with less then 5% blast cells just after her first round!! God is so good! Just after her first round of chemo her bone marrow was no longer producing the leukemia blast cells! The chemo was working!! At the end of July, Kylie was allowed to go home. She spent 26 days in the hospital.
Kylie still has a long way to go in her treatments. She has 6 rounds of chemo total. She is responding wonderfully to the treatment. Her parents are planning a head shaving party, and Kylie keeps asking when she can do it. This girl isn’t afraid of anything, and she is already showing her cancer who is boss.
Kylie’s FB page: https://www.facebook.com/groups/1443369125933962/
Posted by PS Ladies at 8:55 PM
Meet Miss Faye, the sweetest most beautiful little girl! She is such a fighter and stole our hearts with her beautiful smile. Please read her story below and donate to her amazing family at www.psiadoreyou.com.
Three and a half years ago we were expecting our third baby and Faye, then three, often complained of leg pain. Doctors chalked it up to growing pains, but Faye’s pain increased, she often had fevers, and eventually she didn't want to leave bed. The only comfort she could find is if we were rubbing her knees 24/7. Several days after her brother Nixon was born, we took Faye back to the doctor where they did x-rays and blood tests. Hours later we were in an ambulance heading to Texas Children’s Hospital where Faye would stay for the next five months to receive chemotherapy for Acute Myeloid Leukemia, a rare type of leukemia that is difficult to treat. The doctors told us a bone marrow transplant was an option, but Faye responded so well to chemo that we (doctors included) thought it would be best to proceed without a transplant, despite her little brother Nixon being a match.
Faye spent the month of September in the oncology ward of Texas Children’s Hospital receiving chemotherapy to bring a second remission, which has been achieved. Currently Faye is on the bone marrow floor where she received additional chemo to kill her bone marrow. She has received her transplant using Nixon as a sibling match. Now it is a waiting game to see if her body accepts the cells from Nixon.
Faye is as brave as a little girl can be as she goes through what no little girl should have to and has always prayed for her brother Nixon that "he will be OK when they do the 'bow and arrow'” (Faye’s way of saying bone marrow). We are so grateful to our Heavenly Father and for the heavenly and earthly angels who are helping Faye and our family through this fight.
Posted by whitney holland. at 1:50 PM
We are honored to be featuring little miss Milly! She stole our hearts instantly and we know she will yours too! Please take a minute and read her story, written by her mom Jen. We love you Milly!
The story to get Milly’s diagnosis is not your typical one. Normally, Leukemia is diagnosed relatively quickly. A simple blood test is generally all it takes to point the doctors in the right direction. Milly’s diagnosis journey was not that simple.
Prior to the start of Milly’s symptoms she was a rambunctious, happy, healthy, smart, independent 2 year old. For me, watching my children grow and progress by learning to sit, crawl, walk, and talk is my greatest joy. Try to imagine watching your child suddenly begin to regress. Our Bug stopped walking, crawling, and communicating.
This is our story.
Milly’s symptoms started in the end of October 2013. She had not wanted to put any weight on her left leg and a weird bump had shown up on her left cheek below her ear. We took her to the ER to be evaluated for leg pain and what doctors suspected to be an overactive lymph node. Milly was prescribed an antibiotic for her lymph node and we were instructed to follow up with our pediatrician. When we followed up with her pediatrician, he began to connect the dots. This would be the first time we were told that she might have cancer. The doctor ordered blood tests, x-rays of her legs, and chest, and measured the swollen lymph node. He called us an hour later informed us that she did not have cancer. We were told “everything is normal”, and “there is nothing to worry about.” We were relieved, but frustrated because her symptoms continued.
Two days later the lymph node on her left cheek had grown to about three times in size and was very red and warm to the touch. Milly developed a red rash all over her core and she was still limping. Back to her pediatrician we went. The doctor diagnosed her with an allergic reaction to the antibiotics and prescribed a different one. He attributed her limping to growing pains. Mitch is very tall and had growing pains in his legs growing up. Milly is very tall for her age, so we accepted that diagnosis.
A week later Bug spiked her first fever. She was still limping and her lymph node was still swollen. We took her to the ER at Primary Children’s Hospital. The doctor requested blood tests…again. We are told that her symptoms were not a result of cancer. The ER doctor referred Milly to an ENT (Ear, Nose and Throat specialist) to have the lymph node examined. Her appointment was a week later.
November came and along with it Thanksgiving, our Anniversary, and Milly’s 3rd Birthday. We tried to keep things as normal as possible for Milly and Jasper (who was now 7 mos. old). Meanwhile we continue to watch our Angel deteriorate and we are constantly assured by the nurses and doctors that Milly is fine and that there was nothing to worry about. Despite our many efforts to get answers, there were none.
It’s now December.
The ENT examined Milly. He ordered blood tests and preformed an ultrasound on the lymph node. After receiving the results his recommendation was to surgically remove the swollen lymph node. Surgery was scheduled for the end of December. By this time Milly was regularly spiking fevers as high as 104.0. She hasn’t been walking or crawling for about a week. Waking up in pain multiple times a night has become the norm. When she did sleep, she was so fretful, constantly rolling and moving trying to get comfortable that she’s hardly getting rest at all. Milly is completely dependent on us for everything, and is finding it difficult to communicate what she is feeling. The doctors advised us to alternate Tylenol and Advil to manage her pain; however the medication did nothing to ease her discomfort. The doctors attributed all of her symptoms to the mass on her face and hoped that once it was removed she would get better.
December is a time for decorating, Christmas shopping, parties, and that all important visit and picture with Santa. Milly’s surgery has been rescheduled for the 19th of December. Milly has not walked for two weeks by this time. After the visit with Santa, we were taking our little family home, when we hit a bump and the pain hit Milly so bad that she was inconsolable. We had no choice but to take her to the ER at Primary Children’s Hospital and refuse to leave until we got answers. We asked the doctors to run whatever tests were necessary regardless of cost. The medical staff ran blood tests and took X-rays of her left leg. The blood tests returned normal, however the X-ray revealed a black spot just below her knee. The result of the X-ray was what prompted the doctors to admit our baby bug into the hospital.
Over the next two days we repeated Milly’s history over and over to nurses, residents, fellows, and attending doctors. We were assured that Milly’s blood tests were normal and cancer was not a consideration. Eventually, her team ordered an MRI. Milly was administered anesthesia for this. When the results returned our main doctor took us aside and told us that her left leg had a fracture just below her knee and they were going to give her stronger medication to control her pain. She also told us that there are three possibilities to explain Milly’s symptoms. The team wouldn’t know for sure until they could get her into surgery. There were three possible diagnoses under consideration, bone infection, Leukemia or Lymphoma. We had to wait 24 hours before Milly could put her under anesthesia again. This surgery and tests that would hopefully provide a diagnosis.
On December 17th 2013 Milly went into surgery and we waited for the answers we had been searching and fighting for since October. Before Milly was back to her room her doctor led us into another room and introduced us to an Oncologist. He informed us what no parent wants to hear. Milly, our beautiful, happy, independent three year old has been diagnosed with Leukemia. I can’t describe how I felt in that moment. I was relieved to have an answer for what was afflicting our daughter. At least we had a direction to head in. However, hearing that your child has cancer is an experience no parent should have to face. It is difficult but it is something we will face head on every day.
At this point we were transferred to the cancer ward of Primary Children’s Hospital and Milly started treatment immediately. A device called a port was inserted in her chest above her heart, where she will have chemotherapy pumped directly into her system. The port is also where her labs will be drawn from. An Echocardiogram was administered to get a baseline reading of her heart. The medications that we are required to give her will cause heart damage. She got the first of many Lumbar Punctures and they put chemo directly into her spinal fluid. We met with her main Oncologist, and he explained Millys “roadmap” for the first phase of treatment. Over the next few days we met with a Physical Therapist to evaluate Milly so we could start the long road to get her walking again. We met with a dietitian to discuss her diet, and a pharmacist to learn her prescriptions. In addition we were assigned a social worker to help ease the transition into this new phase. We met with nurses who trained us how to care for Milly. Instructions on all of the activities we could and could not do with her. There is a list of signs to watch for, when to call the doctor, and when to go straight into the ER. Mitch and I felt like brand new parents, like we had to relearn how to care for our own daughter. It was difficult and exhausting.
On December 23rd 2013, and a week and a half after Milly was admitted; we received a discharge and were sent home armed with a binder full of information and instructions. Also included is a bag full of medications and more medical supplies than we have ever had in our home. We were so grateful to be able to be home as a family for Mitch’s 28th Birthday and Christmas. It was amazing and utterly terrifying to be home and responsible for all of her medication and care.
Jasper was such blessing through all of this; he was carted from one Grandmas house to another. Was such a trooper about switching exclusively to formula (I had to stop breastfeeding). His schedule was all over the place so we could focus all of our attention on Milly.
Today, Milly is in the delayed intensification phase of treatment. She is adjusting to her new routine as we go to the hospital for chemo. She has to undergo anesthesia for lumbar punctures at least once a month. Milly receives anywhere from 5 to 10 medications a day and she lost her beautiful curly blond hair. On January 23rd Milly took her first step with the assistance of a physical therapist. It was a day of celebration! Most days she is that rambunctious, happy, healthy, smart, independent (now) 3 year old that we once knew. The pure joy that Milly has in her heart is inspiring. She amazes us more and more every day and we are so grateful for every moment we are blessed have with her. She is our little superhero.
Posted by whitney holland. at 9:11 AM
We would like to introduce you to September's cancer cutie the beautiful Ambrea! Ambrea was diagnosed with a rare form of cancer, Ewings Sarcoma, in July. She stole our hearts with that sweet little smile. Please join us by showing her and her family as much support as we can! You can donate directly to Ambrea by clicking on the donate button at www.psiadoreyou.com. Here is her story written by her mom....
Our beautiful, sweet little daughter Ambrea is truly amazing! She is so much fun to be around, from her spunky, humorous personality to her generous heart. Ambrea is 3 years old and will turn 4 in September. She has 2 older sisters Mellili (11), and Shalantie (9), and a baby brother Ammon (10 months). She loves spending time with her family, dancing in the living room, rubbing her face on her brother’s stomach until he laughs or doing gymnastics with her sisters. Her favorite place to be is at home. She likes to help mom fold laundry and she absolutely loves to serve dinner to her family.
While on vacation in Washington, on Independence Day weekend, my sister broughtAmbrea to me. She said she had fallen off the trampoline, and had landed on her back. I thought she merely had the wind knocked out of her as she was trying to catch her breath. I was on the phone with my husband, who was back at home in Arizona, and told him I would call him back after comforting Ambrea. After a few short minutes she was crying out in pain and holding her stomach. I knew something was horribly wrong and I had to get to the Emergency Room as soon as possible!
The x-ray results were alarming, as they thought she had torn her diaphragm. We rode in ambulance to the trauma center at Randall Children’s Hospital in Portland, OR. An x-ray done by the hospital staff revealed a tumor the size of a cantaloupe in Ambrea’s chest. Four long days later we were told every parent’s worst nightmare… she has cancer (ewings sarcoma to be exact).
It has been so heart wrenching to see our spunky Ambrea go through so much pain and suffering… Chest tubes to prevent a collapsed lung, constant poking, prodding, multiple IV’s, surgeries, chemo treatments, constant fevers, vomiting, and multiple blood transfusions too. But the hardest part is watching our happy, fun-loving daughter, who would always say cute things to everyone, be afraid of everyone who walks into the room. She completely shuts down, bows her head and closes her eyes like she is going to wake up from a bad dream. However, as time goes on, and through the love, support and prayers of our family and friends, we accept and overcome the daily challenges of cancer. We are eternally grateful to God for his tender mercies, for we know we could never do this without Him.
Posted by whitney holland. at 8:26 PM
Meet this month's cancer cutie the fierce Jayden! His story touched us and we know it will touch you as well. Please head to www.psiadoreyou.com to donate directly to Jayden and his family. Read his story below, written by his mom.....
Jayden was a happy and healthy 10 year old boy, or so we thought. Unknown to us his body was being taken over by cancer of the blood, otherwise known as leukemia. In August Jay began having headaches almost daily. We thought it was his eyes causing it, so we took him to get glasses. When that didn't help, we told him to drink more water. Then February 2014 came and he started having symptoms of a sinus infection. We took him to the doc and got him antibiotics. While on the antibiotics, his fever began to go away and he started to feel better; however as soon as the antibiotics were finished the fever and pain returned. Jay was prescribed a second round of antibiotics and the same thing happened again. For the next 2 week he ran a fever daily from 100-101. He wasn't acting sick, so Brett & Roberta (Jay's parents) thought maybe he had been exposed to mold or somthing. Wednesday, March 5, 2014 (Jay's brother, Joey's birthday) Roberta took Jay back to the doctor, where things began to get worse. At this appointment the doctor heard a very prprominent heart murmur and noticed that Jay's liver was enlarged. She ordered blood work and found that Jay's hemoglobin was at 4 (normal is 12). This was critically low, if Jay was an adult he wouldnt have been able to even move off of the floor. She told Roberta to take Jay straight to the emergency room. During the same test, Jay's platelet count was normal (about 8000). By the time they retested his blood at the hospital, 3 hours later, it had dropped in half to 4000. At the hospital, Jay was immediately admitted to the pediatric intensive care unit because of how dangerously low his hemoglobin was. Once admitted to the icu, the doctor requested to speak to both Brett and Roberta together where she explained that she believed Jayden was sick with leukemia. The next day her suspensions were confirmed.
Posted by whitney holland. at 6:45 AM
Meet this months cancer cutie, the gorgeous Taleah! She is such a beauty inside and out and we pray every day this sweet girl will kick cancers butt for the 2nd time!! Read her story below. XOXO
Taleah was diagnosed with Acute Lymphoblastic Leukemia on August 26th, 2011. She completed 2 1/2 years of treatment and she was cancer free for 4 months. As of March 24th, 2014 the cancer has returned. She will be fighting for her life, for a second time.
Taleah comes from a big family and is the oldest sister to a three year old brother and to 4 month old twin sister and brother. She loves being a cheerleader and can bust a move like nobodies business!
I guess you could say that a mother's intuition means something. Taleah had been acting "off" for the last week. I had a terrible feeling going into our upcoming appointment at PCMC. I even shared that with my dad and I don't think that he liked hearing that from me. We headed to PCMC (Friday), did the routine "stuff" and the labs showed that her platelets had dropped a little. Dr. Barnette didn't seem concerned and even looked under the microscope and had a great explanation for it.
Taleah even rang the bell because she was cancer free! I still left feeling a little uneasy and couldn't figure out why. Now I know. She started fevering the following Thursday and it continued and hasn't stopped. I began obsessing over ALL information, dropping platelets, contacted other cancer moms, and couldn't get it out of my mind. I even texted our pediatrician on Saturday asking if I should get her labs drawn again. He wanted to wait until Monday, which I am glad that we did. We were all thinking/hoping it could be a virus that was causing the drop in platelets (that is a sign of relapse... along with a jump in WBS which hers had done as well). I just knew in my gut that something wasn't right. Labs came and I kept checking for the results. I honestly couldn't function. My MIL had to take my kids because I made myself physically sick over it. After a few phone calls and lots of tears, it was confirmed. We were expected at PCMC the next morning at 8am. The drive was long and trying to break the news to her was devastating. She became very quiet and wouldn't talk about it. That was one of the hardest things I have had to do. PCMC wanted to do their own testing to confirm it. There was a small chance that it could be a crazy virus but I knew it wasn't. Of course I hoped for that, but hearing the confirmation again was a giant blow to my stomach. Watching Taleah hear it all just about ripped my heart in half because this time she has a better idea of what is to come. We continued with an x-ray, labs, and making her comfortable. Her blood had about 50% leukemia cells. We would await the procedures to come the next day to have a better idea of what we were dealing with. I am having a whirlwind of emotions. I am angry, so sad for Taleah, sad for my other kids, mad, heartbroken and a little hopeful. It is a lot harder to feel "hopeful" this time when the odds were so good before and she was in the 8% that relapse. How can this be?! It is not anything that I ever hoped for and didn't "see it coming" until a week ago.
The first month is critical! We need to get her body into remission after the first 28 days. This will give us the most hope. IF that happens, we will have finished one round with a week at home to follow. We would have 2 more rounds simlar to that. All of which will be done at PCMC. IF all goes according, it would mean preparing her for a bone marrow transplant (which would happen after the 2-3 months of inpt chemo). We will be testing our 3 kids this week to see if they are a match for sweet Taleah. A sibling match would be the best case scenario (the babies would have to be a certain weight as well). It wouldn't be dangerous for them to be her donor. We also have Tait's cord blood that we could test as well. Sloan's isn't viable because his was wrapped around his neck and we had to cut it at birth. The transplant would be approx 35-60 days inpt and then staying close to PCMC for another 40-50 days after that. It is a long road, a scary road and we are praying that all can go accordingly. We appreciate all of the love and support that has already been offered on our behalf.
To donate to Taleah go to www.psiadoreyou.com
Posted by PS Ladies at 10:41 AM
We would like you to meet this months cancer cutie, PIA! She has stolen our hearts and we know you will fall in love with her too. Pia was originally diagnosed with Transient Myeloproliferative Leukemia, a rare cancer that only affects children with Down syndrome. She beat TMD and a couple months later was diagnosed with AML cancer! Pia, you kicked cancer's butt once we know you can do it again!
Here is Pia's story told by her beautiful mother:
It was December. We got a call early Sunday morning to tell us that Pia was coming. We went to church. We came home, and tried to eat. We paced. We watched football, and cleaned the house, but mostly we paced.
At 4:00 we got another call. She’d been born. She was healthy. And she was waiting for us at the hospital.
We met Pia Therese that day, and fell in love with her. She was beautiful. And she was, from that moment forward, our daughter.
Pia is our second child. Like her brother, she’s adopted. And like her brother, Pia was born with trisomy-21, Down syndrome.
We took her home on Tuesday. She was little, and pink, and perfect. On Friday morning we took her to the doctor. She was weighed, and measured, and poked. She giggled and fluttered her eyes.
On Friday afternoon, we got another call. An ominous call. We needed to go back to the doctor’s. Something was wrong.
Things started happening fast. We went from the doctors to the hospital, quickly, quietly, trying to process what we’d been told. We sat quietly, but the word “leukemia” echoed in our ears.
Pia had something called Transient Myeloproliferative Leukemia. A rare cancer that only affected children with Down syndrome. The prognosis was good. Just three weeks later, and with no chemo, she left the hospital. 2 months after that, Pia was cancer free.
Until December. Pia was about to turn one. We were planning a birthday party. But after a trip to the doctor for a lingering cold, the phone rang. We needed to go to the hospital. Right away.
Four hours later, we heard the word again. Leukemia. Pia Therese, our little baby girl, has Acute Myeloid Leukemia. The next day, she began chemotherapy.
Pia has Down syndrome, so she’s not without challenges. But she is an extraordinary child. She never stops moving. Or smiling. She climbs, and tugs, and throws everything she can. And her smile is the brightest we’ve ever seen. She lights up when she sees a familiar face, or makes a new friend.
She’s had three rounds of chemo. She’ll have three more. Each round means a month in the hospital, isolated from her brother, spending time nauseous and not sleeping. But Pia’s joy is unflappable. She loves each day, and each person, with all her heart. Her optimism is a source of strength for us.
Our faith tells us that good can come from suffering—that God can use our suffering to achieve great things. We’ve always believed this. But Pia has proven it true. Her life—her beautiful, joyful, challenging life—has touched so many. But she’s touched no one more than us.
Our daughter came to us with a phone call. So did cancer. Twice. But every day, we thank God for those phone calls—for Pia, and for everyway she’s showered us with love.
Posted by PS Ladies at 7:58 PM
April's Cancer Cutie is 6 years old and as cute as they come. And she is a fighter! With a rare case of Stage-3 Pediatric Melanoma skin cancer, Avah's story is shared below by her loving mom Joanna.
First let me start off by telling you a little bit about our sweet Avah. She is such a blessing in our lives. She completed our family when she was born and she has brought so much joy to all of us. She adores her 2 older sisters, and she loves playing with them. She has always been a momma's girl, she was and still is attatched to my hip, my little sidekick. She loves her daddy and gets so excited everytime he walks into the room. He is a super hero in her eyes. She has always been happy and smiling. Even through all of her trials she has always kept such a happy and positive attitude. She is the strongest person I know and she is such an amazing example to me and to anyone who has the privilege of knowing her.
When Avah was 3 years old I noticed a mole on her scalp while I was fixing her hair. It looked like a normal mole, but I called her pediatrician to set up an appointment just to be sure. He looked at and said that it was a normal mole, but that we'd keep an eye on it. I always looked at it every day when I did her hair. It never changed. Every Doctor appointment she had, they made sure to look at it. 2 years passed, her pediatrician retired and she now had a new one. One day when we were at the park she was itching her mole. By this time she was almost 6 years old. I looked at the mole and sure enough it looked different. It was darker than it used to be. I don't know if it just suddenly changed or if it did so slowly over time that I didn't notice. Either way, I knew it looked different. It was also itching her, which was weird. She had never complained of it before. I called her pediatrician that day.
We went in to see the doctor the next day. I told her what was going on and she looked up Ava's history. She said that anytime a mole changes or starts itching that it should come off and be sent off for testing. She assured me that it was nothing to worry about since Avah was so young. She referred us to a plastic surgeon in town to do the removal of the mole. When we met with him he told me that the chances of it being anything other than a mole were slim to none and that it would probably be fine to just leave the mole there. I insisted that he remove it.
A few days after her 6th birthday started a roller coaster of good news and bad news, and a number of surgeries to remove the cancerous skin. Through out it all I wanted to be well-educated on pediatric melanoma and did all the research I could on it. I learned it was even more rare than I imagined. And the pediatric dermatologist told us at one point that Avah's melanoma looked like one that had come off of a 60 year old, it was very active and very aggressive. We were so grateful she was in good hands with the amazing doctors at PCH. I continued to do did more research and we talked more with Avah and her sisters. Avah remained the brave little girl she is, so did her amazing sisters.
On November, 7th 2013 we recieved the phone call that forever changed our lives. The biopsy of the sentinal lymph node came back positive for melanoma. The cancer had spread! They wanted to see us in the office a few days later to discuss things further and to talk about treatment options. This news took me by complete shock. I had convinced myself that it would be negative. I cried for a long time in private, along with my husband. After I felt strong enough we broke the news to all three of our girls. They all took it well, especially little Avah. They all had so many questions of course. We answered them the best we could. I had to be strong, I could not let them, especially Avah see me cry. I could not let them know how utterly terrified I was and still am. Strength, love, and encouragement is what I decided to show them.
The few days before the next appointment were the longest of my life! We had no idea what to expect. During these days of waiting I received a call from the pediatric surgeon's office. His secretary said that the doctor wanted to see us in his office right after we talked to the oncologist. What? Why? She wasn't due for her follow up for another week! I was sick to my stomach. They thought my baby needed another surgery. I just knew it. I didn't understand any of it. I began to make a list of questions I had for both doctors. I added to the list whenever I thought of a new question or when friends or family had an idea for one. I tried my hardest to stay busy. I made sure that Avah felt comfortable talking about it and asking questions if she needed to.
The day of the appointments finally came. Her oncologist diagnosed Avah with stage 3 Melanoma. He told us that her chances of beating this are 75%. Of course, he is basing that on Adult statistics with melanoma since it is so rare for children. He talked to us about treatment--which would be a total of 1 year. The first 4 weeks of treatment would be in the hospital or clinic through infusion. After that, they would teach us how to give her injections of the medication, which would be done 3 days a week for 11 more months. My first question after he talked about treatment was, "What are the side effects of this medication?" He told me that the most common side effects are fever, nausea, chills, headaches, fatigue, any flu like symtoms. Some other side effects are hair thinning, vomiting, liver damage, and many other things. I felt so overwhelmed. Why did my baby have to go through this? He also told us that another surgery would need to be done. We had prepared ourselves for that, so it didn't surprise me to hear him say it.
When we left the appointment we had to remain strong for Avah. She will beat this! She is the strongest kid I know, she's is a fighter! We had a talk with Avah before we headed over to the surgeon's office. We made sure she understood what he would be talking to us about. She was sad that she would need another surgery. She didn't understand why. How do you explain something so complicated to a child? It's something that even I have a hard time wrapping my head around. Children should not have to go through things like this.
During the months of November and December she had the surgery to get the lymph nodes in her neck removed and examined--they found 1 out of 24 that tested positive for melanoma. They hoped for 0, but 1 was the next best thing. Avah could beat this, and she would! We were going to make sure of it.
The next procedure was having a picc line put in so she could get treatment, and then she was released to go home on the 23rd of December. We'd be home together for Christmas! It is so amazing how a community can come together in times like this. We were overwhelmed with people coming over with gifts for the girls and for us. People brought us so many gifts, they brought meals, the sang Christmas carols to us. It warmed my heart. Everyone wanted us to know that we weren't in this alone, they were all behind us. That meant the world to us. It made Avah feel so special too, and I love that! She is so special and she needs to know that.
We were due back in Phoenix on the 30th. This time it would just be Avah and I. Shane had to work and he wanted to spend as much time with our other girls as possible. Another week of treatment went by. She handled it amazingly again. They made sure she had plenty of activies to do on New Year's Eve. She won over some new nurses and spread her contagious smile throughout the treatment floor. On the last day of week 2 my husband brought the other girls down to Phoenix to see Avah and I. We decided to stay down there for the weekend and do some fun things as a family. It was a great weekend! Avah and I were sad to see them all go back home.
Since Avah handled the first 2 weeks of treatment so well, her oncologist said the next 2 weeks could be done out patient at the clinic. Avah was so excited not to have to be stuck in a hospital bed all week. We arranged to stay at the Ronald McDonald House for the 2 weeks of out patient treatment. The staff at the Ronald McDonald house were great to us. We appreciate what they do there. Once again, Avah handled week 3 and 4 of treatment like a champ. She suffered from a few minor side effects, but over all it wasn't bad. She continued to amaze us with her stregth and her positive, happy outlook.
We are now at week 9 of injections. My husband and I do these at home. We do these 3 days a week. She has had a worse reaction with the injections than she did with the infusions. Fevers, acid reflux, developing an ulcer, headaches, and it tired much of the time. Her oncologist recently reduced her dose of interferon, and we're hoping it helps with her reactions. And through it all Avah doesn't let it stop her and she's back in school and doing great! The school has been so wonderful to her. They have been so understanding and they help out in any way they can. Avah still has a smile on her face and she continues to amaze everyone around her.
Never in my life did I imagine that this would be happening to our family. I've seen other people go through similar things and I have always felt so sad for them. I remember always thinking that I would never be able to handle something like that. I wasn't strong enough. I looked up to those people so much! Never did I think that I'd find myself on the other end.
The day that Avah was diagnosed my Aunt who has been an absolute angel to our family through this told me something that has stuck with me. She said "Faith and fear cannot exsist in your heart at the same time. You must choose which one you want to have in your heart." I chose faith. We will get past this, Avah will be beat this, and we will all come out of this stronger. I am so blessed to have such an amazing support system--our friends and family have been so wonderful. What a wonderful thing it is to see so many people come together and be so kind. We have had total strangers help us in ways we never imagined. I will never be able to thank everyone enough. The small community we live in has been wonderful to us. Our town has really come together to help our family in any way they can. Avah has touched so many lives. I am so proud of the little person she is, her strength amazes me.
We go down to Phoenix tomorrow morning for her first set of scans since the start of treatment. These will show us if the treatment is working the way it is supposed to. Last night as I was tucking her into bed she was asking me questions about the scans. Avah is always full of questions. She always likes to know exactly what is going on and exactly what is going to happen. I love that about her, she is wise beyond her years. I answered all of her questions then I asked her how she feels about it. She said, "I feel good. Nothing scares me anymore. It's better to be happy instead of scared." Just like that I was given a moment of clarity by my 6 year old daughter who is battling cancer. What an example she is to me every single day. So we are going into the scans tomorrow happy, not scared. She is right, happy is better. I have learned so much from her this past year. Even after all she has been through, she remains happy and upbeat. I hope by sharing her story it will inspire others.
Thank you for reading Avah's story! If you'd like to donate to sweet Avah, go HERE. We're grateful for your support. xoxo
PS - We adore Millie's Princess Foundation for matching all donations! They are beyond generous.