Hello IYHA Hockey Family,

We are just THREE days away from our IYHA & St. Baldricks FaceOff Against Pediatric Cancer event!  This year we have 4 honor kids that will be dropping the puck for those teams who make it to the Guenin Cup Championship games.  Remember, there is still time to sign up!!

 

I would like to introduce Alena Damer,

as written her dad, Scott Damer:

 

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Alena turned 13 last August (2014).  She has always been an active and athletic girl.  She plays soccer and volleyball and likes archery and has been active in 4H with cake decorating and loves art and artwork.  She played the piano and started playing the clarinet in 5thgrade when she was just a little over eleven years old.  She had gone through 4th grade at St. Monica School in Indianapolis, but had started 5th at Zionsville Middle School (Fall, 2012). 

 

Alena developed several (seemingly) unrelated issues like being a little slow at soccer whereas prior to the fall season she was always ‘first to the ball’.  She also seemed to be tired and had several days of “flu like symptoms” – so by October/November, we had taken her to several doctors and specialists which required 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 or walk to the bus stop without taking a rest.  It was the inability to walk a short distance that prompted another doctor’s visit.  When I took Alena for a “sick day visit” at the doctor’s office, she literally had to rest after walking up the stairs and down the hall. At that appointment, blood was taken and within a few minutes,  the doctor sent us directly to a local hospital for admission.  Within 15 minutes of seeing the Doctor at the hospital – he told us that he was about 95% certain that our little girl had leukemia.  We would do some tests over the weekend and a bone marrow extract on Monday to confirm, 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 very difficult, but the support from our Oncologist and the Nurses and the Child Life people at Riley was great and we got her through the discussion in her hospital room on having cancer and losing her hair and all of the chemo and drugs that were to come for her.  Alena was in denial at first, but eventually just bucked up and decided that she was a “Leukemian” and really didn’t have much choice in the matter.  And from there on, she embraced it and has been a trooper ever since.  She started making plans on how to get through it and while she’s had her bad days or weeks along the way, she has mostly been rock-solid ever since.

 

She finally lost her hair two days after school started in 6th grade – and it was probably a little more tragic for her at that point because by this time (9 months into treatment), she didn’t think she’d lose her hair… some of the Nurses even had stated that maybe she would be one of the few to NOT lose her hair completely.  Ironically, she had cut her hair off about two or three years prior to that 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 fashion-ista by then (with regard to shopping and her clothes) 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 loves her new curly look!

 

At this point – she’s 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 researchthat 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 recurrence after she comes off of treatment.

 

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 kind of a “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 Automobilia, 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 and was interviewed on the air for the Riley Radiothon.  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 (even when she probably knew they weren’t) and that there were a lot of people that were worse off than she was.  So we’ve really just 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 has kind of become “Live, Laugh, Love – Cure Leukemia!!” and she’s really embraced that to its fullest through her 2 ½ year journey.  We’re counting down to April 26th, 2015 when she reaches her “end of treatment” and can put this phase of her life behind her…  Her whole story is here at http://www.caringbridge.org/visit/alenadamer.