Meet one of our 2017 St. Baldrick's and IYHA FACEOFF Against Pediatric Cancer honor kids - Alena Damer
We would like to introduce Alena Damer as written by her dad, Scott.
Alena turned 15 last August (2016). She has always been an active and athletic girl. She played soccer and volleyball and likes archery. Alena took cake decorating and dog obedience in 4H and really loves art, artwork, and fashion. She played the piano and started playing the clarinet in 5th grade when she was just a little over eleven years old. She had gone through 4th grade at St. Monica School in Indianapolis, but started 5th grade at Zionsville Middle School in Fall 2012.
In the fall of 2012, Alena developed several (seemingly) unrelated health issues. She seemed to be tired (couldn’t walk to the bus stop without stopping several times to catch her breath) and had several days over several weeks of "flu like symptoms." She also complained about joint pain which we thought was “growing pains." In November, she had seen several doctors and specialists for MRI’s and x-rays and still couldn’t figure out if there was an issue or not… She even had her annual physical and nothing was obvious.
She got to the point in early December that she couldn’t walk the dog up the street without taking a rest. That inability to walk even a short distance prompted another doctor’s visit. At the doctor’s office – she literally had to rest after walking up the stairs and down the hall. At that appointment, Alena had her finger pricked for a quick blood test. We were told that her hemoglobin was only about 3.0, so within a few minutes, the Doctor sent us directly to a local hospital for admission. Within 15 minutes of arriving at the hospital – they told us they were about 95% certain that our little girl had Leukemia. Alena would have some tests over the weekend and a bone marrow extract on Monday to confirm it and what type, but it was almost certain. This was a HUGE day that we’ll never forget – Friday, December 7, 2012.
The first few days and weeks we were kind of shell-shocked and learned more than we ever wanted to know about childhood cancer. Breaking the news to an eleven-year-old girl was difficult. To do so, it was recommended that a Charlie Brown video that portrayed one of Linus’s friend as having leukemia be used. At first, Alena was in denial but with the support from our Oncologist, the nurses, the Child Life people and a pet therapy dog at Riley Children’s Hospital, we got her through the discussion in her hospital room on having cancer, losing her hair and all of the chemo and drugs that were in her future.
To say Alena was sad would be an understatement but eventually she just bucked up and decided that she was a “Leukemian” now and she didn’t have much choice in the matter. From there on, she started making plans on how to get through it and has been a trooper ever since. While she’s had her bad days or weeks along the way, she has mostly been rock-solid and had a positive attitude ever since.
Alena would state that the worst thing that happened during her cancer journey was losing her hair. For the first nine months, it got quite thin. Unfortunately, she finally lost her hair two days after school started in 6th grade. It was perhaps a little more tragic for her at that point because by this time some of the Nurses even thought that maybe she would be one of the lucky few to NOT lose her hair completely. Therefore, she wasn’t expecting it.
Ironically, she had cut her hair off about two or three years prior to her diagnosis and donated it to “Locks of Love” – but there she was – years later needing to get it back for a hairpiece of her own!! She had become quite the fashionista by then so it was a big challenge to stay stylish with no hair – but she pulled it off with a variety of coordinated hats and scarves. Being a twelve year old girl, she was definitely a little self-conscious about it and only went out a few times without her hairpiece and a scarf or hat. But when her hair came back – it was SUPER curly and darker – she really loved her new curly look!
Now, over three years later, Alena’s hair is long (she doesn’t want to cut it again), darker and with some wave to it.
Alena had twenty-some spinal taps, countless IV chemo infusions, about 26 days in the hospital, and a daily pill regimen that has required dozens of reminders on our mobile phones. But with modern medicine and literally thousands of studies and research programs that are going on every day (and being funded in part by St. Baldrick’s fundraisers) her type of leukemia is very treatable and survivable and she’s looking forward to a normal life with a fairly low chance of relapse now that she’s been off-treatment for almost two years.
While no one would look forward to childhood cancer, there have been some side-benefits. We’ve certainly become closer as a family as we’ve dealt with Alena’s cancer. And the support from Riley has been great. They’ve really gotten Alena involved in a lot of things. She’s actually had a lot of fun, being a “patient spokesperson” for Riley, once she got over the idea of having cancer and being open in talking about her health and ‘issues’. She rode in a convertible in a parade for the Carmel Artomobilia, and has been interviewed on TV several times and was interviewed by Miss America (Katie Stam) on stage at the Miss Indiana Pageant. She has also been interviewed and helped out with some of the Dance Marathons for Riley Hospital, which have raised tens of millions of dollars for medical research and to conquer childhood diseases. She has also been interviewed on the air for the Riley Radiothon a few times and on a few stations, and also for the Make-a-Wish Request-a-Thon on radio station WZPL. And each time, she’s gotten a little more comfortable talking about it and helping to raise money so kids won’t have to go through all the “stuff” that she’s gone through.
Throughout it all, she’s kept her sense of humor and always kept us laughing with her outlook on leukemia and life. Even when she was in the midst of the worst of the chemo treatments she almost always had a smile on her face and figured that things were going to be better soon and that there were a lot of people that were worse off than she was. We’ve really marveled at her good attitude, which I think probably carried her through a lot of the difficult sick days along the way.
The motto that she and her friend created became “Live, Laugh, Love – Cure Leukemia!!” and she’s really embraced that to its fullest through her four-year plus journey. She had her final chemo pill and came “off-treatment” on April 26th, 2015 so she’s working to put this phase of her life behind her.