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Honored Kid Sami H. Age 19

Sami H.'s Photo
Location
Joliet, IL, US
Diagnosis
Acute lymphoblastic leukemia (ALL)
Date of Diagnosis
February 2007
Status
In treatment
Treated At
Advocate Children's Hospital - Oak Lawn

Message

A VERY, VERY BRIEF OUTLINE OF SAMI'S JOURNEY SO FAR (hard to believe this is considered brief, but in reality it truly is) :
Like many girls, Sami loves to dance. In fact, it's her greatest passion! And attending school ranks nearly as high in her book. In between the dance studio three nights per week for over 6 years, and of course school work, she played violin, co-captain of cheerleading squad, active in once per week youth group and church, enjoyed ice skating and riding her bicycle, as well as sleepovers with friends on the weekends. A perfectly healthy, very caring and compassionate young lady, even as a toddler. She donated her hair to Locks Of Love at the age of 5, she said, "They need it more than me" referring to the "cancer kids" as she called them at the time. Again she donated her hair just prior to her 8th birthday. Ironically a month and a half later, in 2007, she was diagnosed with cancer.
As she accepted this diagnosis, Sami's words were "I know God has a special plan for me, we just don't know what it is yet".

Always wearing a smile, she faces each day with astounding courage. One of her many challenges, severe neuropathy, diagnosed secondary to the cancer shortly after initial treatments forced her hands into the shape of lobster's claws, and distorted her posture, as well as prevented flexing of her feet. Therefore making walking difficult and causing her to fall about every few steps taken. All due to one particular chemo that affects 1 out of 1000 children this adversely. Simple tasks: attending school, riding her bicycle, dressing herself, teeth brushing, writing, and walking became near impossible. Dancing was out of the question! Sami refused to accept this, she said, "I accept cancer because God wants me to have it. I take my chemo because I want to stay alive. But while I'm alive, I want to live..." (wise beyond her years sometimes! Also like many other young people fighting cancer). Consequently, physical and occupational therapy twice per week, aquatic therapy once per week, daily strengthening exercises at home, wearing rigid leg braces 12 hours per night, and visits to her Pediatric Orthopedic Surgeon, and Neurologist. Naturally, scheduling all of these in between the twice (plus) per week visits to the cancer center- finally after a year of these physical therapies she could manipulate a pencil and walk effectively again. Now, and for the last two years, physical therapy is once per week.

Despite the chemo she was still receiving, Sami relapsed while in treatment, 2008. It was discovered that cancer had begun growing in her brain and spine (central nervous system). The timing of relapse darkened Sami's prognosis, but did NOT shake her faith in God, nor her belief in his "special plan" for her. High Dose Treatment and it's residuals have been much more destructive than anyone could have prepared us for. Most devastating though, was the loss of one of her closest friends, also relapsed fighting cancer - sadly this has made an impact of which cancer has no competition.

Still undergoing treatment, 3 years now, and she's 11 years old. The surgery, pills, brain radiation, needle pokes, spinal taps, eye pain, bone marrow aspirations, loss of friends, infections, bone pain, nausea, vomiting, neutropenia, headaches, diarrhea, hair loss, blood transfusions, skin discoloration/rashes, mouth sores, and the list of experiences goes on- she is still smiling. Through it all, Sami's amazing disposition, bravery, beautiful smile, and never-ending hope continues to inspire many.

She has spoken before congregations as well as other groups to help raise awareness of saving lives through blood donation. In the spirit of 'giving back', in 2008 she facilitated a blood drive for LifeSource Chicagoland donor bank, where she greeted more than 100 donors over the course of 10 hours, thanking them for giving the gift of life.
Since 2008 Sami has been an ongoing "Patient Honoree" for Team In Training (through Leukemia Lymphoma Society). She has attended a couple of events, and sends team (TNT) members drawings and notes of encouragement, as she commends their efforts to raise awareness and funds for cancer research.
Sami participated in a St.Baldricks shave day in 2008, when her Uncle Sam (pictured in the photo gallery) raised funds for the foundation. Most recently, 2010, she was the guest speaker at a St.Baldrick's event held at Northwest Elementary School in Evergreen Park, IL. Where she briefly spoke about being diagnosed with cancer, and a little bit about what life is like for a kid with cancer, thanked them for participating, as well as for recognizing "bald is beautiful". :-)

Although Sami cannot yet dance, or attend school, ride her bicycle, and sometimes can't even climb the stairs by herself; she doesn't dwell nor really even mention her limitations. Instead she focuses on what she can do, making the most of her abilities- and this is only one of the greatest lessons I've learned from Sami. She truly is my hero.

The sweet pleasures and innocence of childhood was cut too short, by the harsh realities of cancer, for Sami as well as many other children fighting this battle. We sincerely thank all of you for working so hard to raise funds for childhood cancer research.
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