Alexa’s Story!

Over the next 6 years Alexa would grow into a strong, beautiful, happy, smart and loving child. She often exceeded my high expectations. Everyday was a gift, and each milestone reached was cherished. She brought me happiness everyday. Looking at her I was never able to see the where anyone would consider her presence “burdensome”. She was the reason I got up everyday. Her smile gave me life.

October 2005

Shortly after Alexa’s 6th birthday, she began to complain of pain in her right knee. I took her to see an orthopedist who did x-rays as well as an exam. No diagnoses was made. I kept asking what it could be, cause she doesn’t ever complain. I was told to bring her in 3 months from then, if the complaints continued, but otherwise not to worry. My instincts knew this was something bad. Just as I knew my baby had something wrong.

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

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.

Alexa one day you will read this, and I hope you know how much your life has changed the lives of so many-for the better! You can do anything! I have always believed in you, and I always will!

You are my heart! I am so thankful to God for choosing me, to have the pleasure to be called your mom.

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

Lauren-