This is Alexa. 2 months before getting diagnosed
My name is Lauren Meader. This is my story, of how my love for stamping was able to be used in turn to help raise money for a Cure.I am a stay at home mother of three. Alexa- 7, Noah- 4, Amber- 3.I began stamping over three years ago while i was pregnant with my third child. Being home with the children everyday was fulfilling, but I sometimes felt like I needed some time for me.I was first exposed to stamping by my mother-in-law Charlene. I was always in awe of the beautiful hand stamped cards she would make me for every occasion. Myself having no artistic talent, cannot even draw a decent stick figure. So, after getting a gift certificate to a local craft store for my birthday, I decided to give it a try. One flower stamp, black ink pad, set of colored pencils, and a note card pack later, here I am, totally addicted, and loving every minute.I fell in love with stamping because it allowed me to be the artist my artistic talent couldn’t. I found it to stimulate my brain, yet relaxed me all at the same time. I fit stamping in every moment I can. Most of the time I spend is after my husband gets home from work. He takes on making dinner, bath duty, and story time. He has been very supportive of my stamping hobby from the start. He is the one who encourages me to push myself. He built me my stamping “retreat” in our basement, so that its free from distraction, and I can leave my things out, without them getting touched. It lets me have the space I need to have creative freedom, and little distraction from the children. After stamping about a year, I signed up as a Stampin’Up! demonstrator. My up-line Paulette Wolfe gave me a website to view. it was called Splitcoast Stampers. Its a website full of people with amazing talent, who share their art work, as well as support each other in many different ways. It was after finding this site that my stamping really started to improve. I would learn new techniques, and was encouraged to think outside the box. The comments people would leave on my work was so encouraging and inspiring. It is this site full of wonderful people that would also later reach out to my family, and become part in supporting making my dream a reality.Alexa’s Story There are moments in a mother’s life that they can remember every detail of. As if it just happened yesterday. Let me share a few moments as Alexa’s mother that I remember vividly.Jan. 12 1999A Positive pregnancy test! From the moment I saw those 2 pink lines, I knew something was very wrong with my baby. I shared these thoughts with anyone who would listen. Being just 21, healthy, and with no family history of disabilities I was reassured my baby was fine.April 28, 199917 weeks gestation-Following a positive Alpha Feta Protein test (AFP test) I was given a Level 2 ultrasound. It was that day that my fears were confirmed, as I learned the baby girl I was carrying had Down Syndrome. She had 10 out of 11 markers that are found on a ultrasound for a child with DS. They also saw a large amount of fluid surrounding her brain. I was told she would most likely be stillborn, and more than likely would not make it another 3 weeks gestation.The facilities physician recommended I have a medical miscarriage AKA abortion. As it was put by him “Lauren, you are so young. You should not burden yourself with the life long commitment that comes with a person born with DS. You have a long time to be able to go on and have a perfect, healthy baby. Don’t ruin your life.”I was sick over the reaction to the diagnoses of my little girl. Seemingly more concerned with terminating in his opinion a “imperfect” person, not even considering the fact the his idea of perfect and mine were totally different. This was MY FLESH, she was perfect to me! As a mother you love your children unconditionally, as I already loved this little person I was carrying, but never even met yet. I felt an unbelievable desire to protect her from the world, and was determined to give her the best life possible. She would be special, not like everyone else. She would see the world through eyes that we should all see through.Sept. 29, 1999 1:58pm I welcomed Alexa Anne Kauppila into the world! Weighed in at 9lbs, and was 20 inches long. Full head of dark hair, and blue eyes. When they placed her on my chest she was screaming. I touched her face, as I cried tears of joy. I spoke my first words to her saying “Oh Alexa! You’re finally here, and your ok” She stopped crying, and turned her head. She looked right into my eyes and held my finger. I will never forget that moment. They then quickly took her away.5:30pmIt is determined Alexa has a life threatening heart condition. She had 2 large holes in her heart. They stabilized her, then med flighted her to Boston Children’s Hospital.I discharged myself 5 hours after giving birth to go and be with my daughter. Hours after arriving at Boston Children’s hospital I met the cardiologist caring for Alexa. I am told she will need open heart surgery to repair the holes in her heart. I was in shock. This was an unexpected complication, although common in children with Down Syndrome. Not only was I a first time mother, but one to a child with special needs, that was also compounded by a serious medical condition. I was overwhelmed, and scared. I would gladly have given my own life, had it meant Alexa wouldn’t have to go through anything.Oct. 22, 1999
Since Oct. Alexa continued to complain about her knee. She missed allot of school cause she was very lethargic, and would run random low grade fevers. I assumed it was just a virus from all the bugs going around in Kindergarten.
Feb. 2 2006
Dinner time. Alexa and her brother are helping me bake bread. Her brother got agitated, cause Alexa was taking up too much room. He pushed Alexa, and she fell to the floor. Alexa could not get up, she just wailed in pain.
Alexa was taken to her pediatrician where we would then over the next 5 days have a series or ultrasound’s to rule out internal injury, x-rays to detect any broken or fractured bones and antibiotics to treat a bout of strep throat. It was even thought she may just have the flu. I kept telling them that the knee pain over the last few months had to be related. I kept asking for blood to be drawn. Finally on the 5th day at the doctors, and Alexa still unable to walk since the pushing incident they drew a whole variety of labs.
Hours later comes the phone call that will change our lives forever.
Feb. 06, 2006
The phone rang, and when I answered I was surprised to hear Alexa’s pediatrician on the other end. I did not expect to hear from him till tomorrow. He quickly asked me if I could go “somewhere quite, and sit down”. He could hear my children singing Ring Around The Rosie in the background. I was a bit startled by the start of his conversation, and quickly asked “Why?”. He said he’d gotten an urgent phone call from the lab about the results of Alexa’s blood work, and the news he had for me was not good. He pleaded again “Please, I really need you to go somewhere quite and sit. I need you to hear what I have to say, and be able to give me your full attention” I ran into my bedroom, closed and locked the door, then sat down on my bed.
“They found leukocytes in Alexa’s blood. Being a nurse for several years I knew exactly what this meant. I felt like the blood was draining from my body, and I began to shake uncontrollably. I felt faint, as my body was overcome with fear, and anguish. A sob welled up in my throat, as I began to scream into the phone, like you would a bad dream. All I could yell was “Cancer! Oh my god! Are you saying that you think Alexa has Cancer?!” He went on to console me and give me more information but his words fell on deaf ears. I was numb. I had all I could do to open the door and walk into the kitchen. My two children dancing a ring around Alexa who was sitting in the middle of their chanting the same playful song, over and over. I handed the phone to my husband without a word, as I sank to the floor of our kitchen and cried. Our children stopped and watched me not knowing what was about to go on.
We had to immediately pack our bags, and plan for a lengthy stay at the hospital where would would meet an Oncologist in a few hours.
Feb 07, 2006
After a series of more tests which included a spinal tap, and a bone marrow aspiration Alexa was diagnosed with Pre B Cell Lymphoblastic Leukemia. A Cancer of the blood commonly diagnosed in people with Down Syndrome.
This is the start of a 2 1/2 year treatment.
This is Alexa a few months into her Chemo.
Alexa’s prognoses is good. She is currently in remission, and while we have had many long stays at the hospital she has done very well through it all. Everyone had reached out to us. It was so heartwarming to see that perfect strangers could be so caring towards a child they never even met!
I turned to stamping to help me cope with all the stress I was feeling. The people on Splitcoast Stampers were also very supportive. Many sent cards, and care packages sharing their stories and well wishes. Many added us to prayer chains at their Churches, and would often ask for updates through a thread started for Alexa or by emails. It was truly amazing.
Since Alexa’s diagnoses I felt called to make a difference. God has a plan for everyone I believe. I just wasn’t sure what I could do.
One night after posting some of my creations on Splitcoast a stamper named Mindy Hollingshead sent me a PM about my work.I was curious about the photo that was used for her avatar. It was a bald little boy who looked much like my now bald Alexa.
We pm’d each-other back and forth, and she informed me she and her friend Stephanie Blaschke had started a up and coming non-profit organization called Turtle Girl Designs, in honor of Stephanie’s daughter Danni who lost her fight with Lymphoma. The organization makes hand stamped items to sell at bazaars and craft fairs. The money raised from the sale of these items is donated to the Pediatric Leukemia and Lymphoma Society for research. Each item made represents a special child. Their photo and biography are attached to the items created for them. Each child is represented by a stamp, and color scheme. She asked if I would lie them to create a line to represent Alexa. All they needed was a photo with her story, and for her to pick a stamp that represents her personality, and favorite colors. I could also design items for her line as well. I felt I found a great way to help, and was so excited.
All I had to do was have Alexa pick a stamp set to represent her. I asked her if she could have her very own stamp set what would it be? Her reply was ” I want it to be Groovy Girls, princesses and butterflies” . Alexa has just about every Groovy Girl doll that Manhattan toys has made. They were the ONLY thing that brought her comfort during this entire process. She has collected them since she was 1 1/2 years old. My thought to her response was “Oh great, how can I find a set like that?!”
As I tried to think of what company may sell such a set I remembered a particular stamp artist with her own company. After viewing a card she posted on Splitcoast I had ordered some sets she designed, and loved her whimsical style. Her name is Melissa Bastow of Missy B Designs. I sent her a email to ask if she would be willing to design a set for Alexa. I wrote Melissa about her story, and that I wanted this set for Alexa so it could be used to create items in her honor for Turtle Girl Designs. I gave her some background information and was wondering what it would cost me to do so.
Within a few hours Melissa emailed me that she would love to help me out, as Alexa’s story touched her. She followed the email up with a phone call to me where we discussed Alexa’s ideal set, and how she would go about making it.
Melissa in turn generously offered to create the set, and sell it on her website. All the proceeds after the initial costs to create it were paid, would then go to Turtle Girl Designs for Pediatric Cancer research!
I was ecstatic when I saw her designs for Alexa’s set. They were better than I could have imagined. Alexa had so much fun viewing the images. Melissa also thought to include Alexa’s own signature in the set.
Once the set was ready for sale, she emailed me. I posted a thread about my excitement on Splitcoast. The response was overwhelming! I was contacted by one of the sites Moderators Jenn Balcer, to tell me that the founder of the site Daven and Tracey wanted to run a banner ad for the set Free of charge to help promote the sale of it.
I am so amazed at the people, most of whom I never met, have taken part in helping me turn my love of stamping into helping raise money for a cure!
Alexa has since received many cards from people made using her set. So many have taken the time by sending her cards and truly brightening her days.
When you buy Alexa’s set, you aren’t just stamping another item, you are stampin for a cure!
I want to thank The Rubber Stamper for allowing me to share Alexa’s story, and her stamp set.
I would also like to thank Melissa Bastow of Missy B Designs for so generously creating this set for Alexa, and donating all the proceeds to this cause.
I would also like to thank Mindy Hollingshead, and Stephanie Blaschke for turning their grief from the loss of a child into helping raise money for research so that some day other families won’t have to feel the same pain. As well as helping me find a way to be part of using what I love to help find a cure.
I would also like to thank everyone at Splitcoast Stampers for their caring and support, as well as all the wonderful friendships I have developed through stamping. They have contributed to making this dream a reality, and have help Alexa get through many tough days by sending their beautiful cards, and well wishes.
To find out more about Turtle Girl Designs visit turtlegirldesigns.blogspot.com
Samples with her set-
You can purchase Alexa’s stamp set by logging onto www.missybdesigns.com for just $12.00 plus S/H. You receive a sheet of high quality vulcanized rubber, which enables you to choose how you want to mount it. You can purchase cling mount, and acrylic blocks from Melissa’s site as well, should you decide to use the unmounted system.
ALEXA’S Set HERE (set is no longer available for sale :C)
To join the wonderful group of people at Splitcoast go to www.splitcoaststampers.com
UPDATE! January 2008
We are almost 2 years into treatment. Only MONTHS left of Chemo.
It has flown by fast.
Alexa has been so much stronger, and doing so well. I am SO proud of her. She is such a fighter.
She is reading at grade level, and LOVES being back at school. Except for Math! For missing so much school ,she remains like a sponge, and soaks it all in.
She rises above all the “labels” they put on people with Down Syndrome. I am PROUD.
She has a great class, full of amazing kids, who are very good friends to her. Thank goodness for other good parents.
Alexa has taught me so much on this journey. I truly think she is the strongest, and bravest person I know.
I am so blessed that God chose me to be her mother. Through ALL the ups and downs of life. She is my light.
She is my reason for being, and has inspired me in ways that go beyond words.
Here is a recent photo of her at her 8th Birthday Party! It was a Princess Costume Party!
How sweet does she look. Hair is slowly growing in. If no hair means having no Cancer, then I am thankful.
I hope our story helps you in some way. Be it making you thankful for what you have, or seeing that there is an end to a difficult road, where the struggles along your journey pay off, in many ways.
Alexa has taught me to view the world in a different way, and for that I am eternally grateful.
UPDATE!!! May 14th
Last day photo
She did it! My baby did it!
This was Alexa’s very LAST day of Chemo!! OMG! I cannot even tell you what I WRECK I have been. But it is now almost over.
PLEASE READ–> THIS POST <—for my thoughts on the last day of chemo
Another UPDATE!!! Post CHEMO!!! Please read this post
Photo on September 29th! Alexa turns 9! Where did the time go?
See the necklace? It is from some very SPECIAL PSF”s of ours. It is a butterfly from Tiffany & Co.! Can you believe that? It is to signify Alexa’s long journey through chemo, and the new begining ahead 😀
Thank you my dear friends-we love you all and thank you for that support during our most difficult days 😀
Here is an updated photo from Nov 14th 2008
This is me doing what I love to do-giving my baby (well 9 is not really a baby, but she’ll always be MY baby to me) a big squeeze!
At this point I am so eternally grateful to say Alexa is a whole new Alexa! Her energy level and everything is just fabulous. Never in my wildest thoughts did I think my life would take the turns it did. Through it all I am thankful because I would not be who I am today, or sit where I am without every step. It has made us closer and stronger than ever imagined. It has made me thankful for every single second. Every breath I breathe.
UPDATED: June 23, 2009
I am going to try to keep updating this as we go!
We are now celebrating 2 YEARS Cancer FREE! WOW! Did I just say that? Doesn’t seem real to me.
Alexa is almost 10! Oh my word! I really cannot believe it has been almost 10 years. I remember hearing she wouldn’t make it to week 20 gestation. That she would be still born! Here we are-almost 10! God has given me 10 wonderful years with my Alexa!
I am so thankful to God for giving Alexa a chance at life. Seems like she is here to forever prove that God is in control, and Alexa is a force to be reckoned with-forever overcoming the “odds”. Never say never! Never lose faith and hope. Reach for the stars!
These are photos of Alexa taken at her Spring Concert , just after her 2 year mark!
She looks so fresh, happy and HEALTHY!
I am SO proud of her! Not just for the fight she keeps fighting, but everything! She has come so far in a short time.
This year was a huge year of personal growth for her. She just completed 2nd grade, and is not going into 3rd. She has the “attitude” that come with her age (God help me that one!). She is a “typical” 9 year old! And that is awesome.
She has overcome some of her “social” obstacles, such as her shyness. She is a “great asset to her classmates” , as quoted my her 2nd grade teacher Mrs. Mahanes-who is WONDERFUL with her! Her teacher said that Alexa has helped so many of her classmates and was a pure joy to have! Weather it was help another shy child out, or help teach them to be kinder and more caring, she has eve taught some of them empathy. The classmates Alexa’s has, have been amazing with her. They know her journey, and they make her keep up with them! They offer a helping hand when she has a hard time, and they all love to laugh together!
She LOVES to read and write! She has written a book of some of the best poems! (I cry every-time I read it) She says poems are her favorite thing to write. She is very good at it. She also has a daily journal, and looking back on all HER memories is the best thing in the world.
She says when she grows up she want to be a Story Book writer! I am certainly encouraging her to fulfill her dream. The sky is limit. If ANYONE can do it, Alexa can. Mark my words, this girl WILL accomplish her dream! I will do everything in my power to make that happen for her!
She has a great gift for writing, and I want her to know she can do ANYTHING, if she works hard.
When I think of all “they” told me she wouldn’t do………once again “they” were wrong!
Look at this face?!
Does this look like the face of a life long BURDEN?
Not to me! I LIVE for this smile.
She is truly one of the most amazing people in the world. If we could all be like her, and see the world through her eyes.
She helps me see the world differently, everyday.
UPDATE: September 2011 Alexa turns 12
Can you believe Alexa is now 12!!! I know I can’t.
You see her face and its hard to believe what she has gone though.
Last September Alexa ended up in the Pediateic ICU with pneumonia. It was by far the scariest of all things she’d been through because they told me at that time that they weren’t sure if she would pull through it. Words cannot express the feeling of hearing that. But I felt God was with me, and his promise to take care of her still held. I felt him with me, and I just knew she was in his hands. Thankfully he healed her and allowed me another year of joy, with hopes of many more to come.
It has been quite the year for our family.
Alexa just entered 5th Grade. I kept her back a year due to her chemo. It was a great decision.
She now celebrates her 4th year in remission. Her prot-a-cath was removed this year too, Pretty scary for me.
She has really come into her own this year. She is your typical 12 year old girl! She is so pretty, and smart, strong willed, determined, and funny! Sweet smile, sassy attitude. She knows what she wants and what she doesn’t. She has developed her own sense of style, and is really expressing herself these days.
She loves dancing and singing. Victorious (the singer/TV show) is her fave! She loves Big Time Rush too. Her favorite things to do is surfing the web and playing games on her laptop! She writes stories all the time, which I really love to read. She especially enjoys watching YouTube, and music videos (parental controls set!) online. She just got an iphone for her 12th birthday as she wants to “text” her friends and family! WOW! who’d of thunk it?
She loves the color fuschia, reading, arts, crafts, riding her scooter and anything with glitter. She wants to learn how to play the flute (Not sure where that come from?) and how to bake. She love Science this year especially.
We spent another year at Point Sebago Maine. It is Alexa’s favorite place to be. She loves the water, and swimming. Alexa is like a mermaid! She will stay in the pool until her skin is going to fall off. I love watching her enjoy something so much.
She just entered dance class again where she will study Hip Hop and Jazz. She is surprisingly good at picking up choreography! LOL! Anytime we go some place that has dancing she jumps right in and picks it up quickly. She is so funny.
She has become more confident in herself, and is less shy than ever. She walks with her head held high, and loves going to school.
She has had such a year of personal growth and accomplishment! To say I am proud of who she is becoming is an understatement. She really has a mind of her own, and is really expressing herself and personality.
She is now wanting to spend more time with me on a “girl date”, which is nice, but in the same breath I hear things like ” It’s my life, I’ll do what I want”, “UGH! Why to I have to do that?”, “I’m very mad at you” and all the fun pre-teen things that come with being 12!
I always go through so many emotions on her birthday, as it is one of the most special days of my life. Alexa deserves to be celebrated. She has gone through so much in her short life, and has taught me so much. I am beyond blessed to have been given such a gift in being her mom.
Here is my mom with the kids recently.
I look forward to many more years watching her grow into an amazing young woman. One who will leave an imprint on the world in some way. I know her life has touched many others, and will continue to do so, as she goes through life.
Alexa I hope you always remember, you can do anything. Don’t let anyone ever say you can’t or place limits on you. I know you will do many amazing great things, and I will always be by your side, prouder than ever.
You are my heart! I am so thankful to God for choosing me, to have the pleasure to be called your mom.
UPDATE: September 29th, 2012
First let me say a BIG Happy 13th Birthday to my daughter Alexa ♥
I now have a teenager! It seems like only yesterday I was watching the ultrasound screen, and seeing your little heart beating within me. I’ve never felt such love in my life. I had no idea that this tiny little being would become such a huge part of my life, and teach me so many things, and shape me in so many ways. This one little person with this little beating heart became the reason I breath, the reason I fight, and the reason I love the way I do today. I had no idea the things I would learn by having you in my life. You have taught me more than words could ever say. I knew you were going to be important, and impact many lives in ways I never thought possible, the the impact of your reach was much further than I thought possible.
Alexa you have come so very far these last 13 years. You have overcome so many health issues, and more obstacles than anyone should have to hurdle, but you’ve done it with such stregnth and grace! You have far exceeded my biggest dreams for where you’d be at 13, and I could not be PROUDER to have been given the priviledge of being your mother. I admire you more than anyone else I’ve ever known. You are full of love, beauty, laughter and dreams beyond dreams. I know you can do anything you set out to do, and I am going to forever he here for you to cheer you on as you do them!
A note on Alexa: Alexa is doing AMAZING!! She just celebrated her 5th year in remission!! She has been relatively healthy, and is growing taller and taller. She is now about 4’8!! She is currently in 6th grade, and takes Hip Hop & Jazz classes. I have her involved in an after school Youth Workshop in our town where she is getting to be a typical teenager, and making hopeful lifelong friendships. I am working hard in “letting go” and allowing her the same freedoms her friends enjoy. Alexa continues to grow socially and really has stepped up to the plate of being responsible and trustworthy. I have many hopes and dreams for her that I KNOW I will see into accomplishment. She is forever a surprise.
Alexa loves writing, drawing, reading, singing and dancing. She is like a little mermaid in the water, as she enjoys swimming all Summer long. She is much like every other teenage girl with her strong opinions and the occasional attitude! She has this fun and funky style that is all her own, and she recently asked for a teen room makeover 😀 Her favorte colors are fushcia and black. She loves listening to her ipod-her faves being Justin Bieber, Selena Gomez, Katie Perry, Taylor Swift, Big Time Rush, and One Direction. We just went to see Big Time Rush in concert too 😀 Lot’s of fun.
I cannot say enough about her and how much she has blessed my life and the lives of those around us.
Lastly I really need to thank any and everyone who has read this, and given prayers love & support. It has really taken us through this time in our lives.
Thanks for reading 😀