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Alena’s Story

Alena will always be loved by her parents and sister, and everyone that spent time with her was touched in a special way. Alena was beautiful, loving, kind, empathetic, intelligent, and talented.

Alena passed away on Christmas Day 2011, from a rare childhood cancer. She now has peace in her Heavenly home.

Alena's first symptoms
Alena was taken to the Doctor on Friday, March 5th because Mom noticed her normally flat tummy was increasing in size. After some testing it was determined she had fluid in her abdomen, called Ascites. Initial testing of that fluid revealed abnormal cells which worried mom & dad and called for additional testing. It was also found that a membrane in the abdominal cavity called an Omentum was very enlarged. When she also developed an increasing fever, she was admitted to Emanuel Children's Hospital on Wednesday, March 10th. 

Celebrating her 10th birthday in the Children's Hospital
Alena spent a total of 10 days at Emanuel Hospital as the doctors put her through many tests and procedures to determine the cause of this unusual abdominal fluid buildup. During her stay at Emanuel awaiting a diagnosis, she celebrated her 10th birthday in her hospital bed on Thursday, March 11.

The diagnosis that made our lives stand still
On Friday March 12, about 2 to 3 liters of fluid was drained from her abdomen, and a biopsy on her omental tissue was taken to Pathology for testing. Alena was diagnosed with Group 4, Stage IV Alveolar Rhabdomyosarcoma which places her in the high-risk category. This is an aggressive soft-tissue cancer that affects children under 15 years old, and rare with only several hundred cases per year in the United States.
                                                                                                                                                                                                 Alena's future
Alena deserves every chance for life, healing and recovery. Her parents pray, plan, and expect that she will overcome this disease and grow into a lovely young woman. She is not alone in her illness, and has the loving support of her family and friends. Alena qualified for the COG ARST-08P1 clinical trial, which is an aggressive and dose compressed treatment plan to fight this cancer. This will be extremely difficult on her and our family.  

Mom & Dad are often stressed to their breaking point. Seven year old Kristine can feel lost in the shuffle and neglected. This is also financially costly for our family, above and beyond our medical coverage. Dad is the sole provider for this family and has taken much FMLA time off his job to emotionally support his family and handle the many decisions. 

Family needs
We certainly have plenty of stuffed animals and candy! Our true needs are for your supportive prayers, and a miracle for our dear little Alena. We need your friendship and can use help with Kristine's childcare during Alena's treatments, and help with everyday tasks and chores.  

Thank you for your prayers and support,
Jim & Carol, Alena & Kristine

Latest Journal Update

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Kristine & Alena - 2006
Kristine & Alena - 2006

Hello dear readers. We are approaching the second anniversary of losing sweet Alena.  My last posting was early summer. I try not to post unless I have something meaningful to say. Some have requested that this site remain open, even though the reason for its existence no longer pertains. So if you are reading this, it’s not because you have been beckoned here by an facebook posting or group email, but just because coming to this caring bridge site is important to you in some way, even though, at this point, all it can be is an update on our family.


That being said, I can tell you that Kristine is in 5th grade and in her second year at St. Cecilia’s. She is doing well and especially excels at test taking. Her 11th birthday is coming up in January. At her next birthday she will pass Alena by in age. This is a really weird concept to me. Her older sister will never get any older but Kristine will continue to have many more birthdays (we hope and pray). The ongoing adjustment of being the only child in our home is still a struggle for her.  She has a very good friend, Megan Tollisen, who she plays with quite a bit. They’re in the same class and help each other with homework and work together on personal projects. They are the same plane intellectually and have many common interests.


Jim is going into his 28th Christmas season as a driver for UPS. This job is increasingly a challenge for him as he feels his age physically, and the workload is more than ever. Since so many more people prefer to shop online (myself included), UPS is increasingly stepping up to meet the challenge of more deliveries, making this season crazier than ever. The hours are long out in the weather, in the dark. Even if he’s hungry, tired, cold, wet, not feeling well, he has to keep going, and he has to treat his customers well. Jim has always been a very conscientious and highly valued employee for UPS. He is also a wonderful father. I wish he could have seen both of his girls reach adulthood. He has put so much time and effort into getting to know his girls and helping them negotiate the business of growing up. He taught them, and continues to teach Kristine about how to handle feelings, relationships and valuing people. He shares his love of science, nature, music and so many other things.  Jim has also made many sacrifices so that I could be home with our children, and he continues to be a very devoted father, husband and provider. He was often the overlooked one when Alena was going through her illness and treatment. He was the one that continued to go to work even though his mind was consumed with what was going on in our family. He was the one who stayed with Kristine so I could be at the hospital with Alena. He was the one who was closest to Alena, and stood by while people made much of my “devotion” to her, as her mother.  Just because it was more obvious for me to be in the caretaking role, it doesn’t mean I was better at it. Jim has better skills at being in touch emotionally and knowing what to say and do, and when to refrain, and relating to the kids on their level. I just wanted everyone to know that he is a fabulous parent and deserves a great deal of credit for his selfless dedication to our family.


As for myself, I have been working at our city library as an on-call employee. When they need coverage for sickness or time off, I come in and help at the front desk with check outs and issuing library cards-that sort of thing. I love the atmosphere and the people there. It has been a great experience for me. I hope that I can move into something with regular hours and medical benefits. I am often at Kristine’s school putting in my volunteer hours. She and I have been getting up earlier on Tuesdays and Thursdays to participate in an exercise class at the school. It has been good for us to do that together. We have a closer relationship now even though I will never fill all the gaps left by Alena’s passing. I try to be there for her as much as I can.


This time of year will always be very hard on our family. There is just no getting around it. I do what is required but it isn’t fun or joyful for me.  That “someone’s missing” feeling comes over me often.  Last weekend we went south to the city of Aurora which is part of Jim’s UPS route. It is a small historical town which was settled by a religious community of German and Swiss emigrants. There are antique shops and old, well preserved, historic homes and buildings. We did the wine and chocolate tour they were offering and also toured of the some of the buildings where these pioneers lived and worked. This was a fun afternoon for the three of us and a way to celebrate the season, though we missed our girl all the while.


Tomorrow I will be disassembling the bunk beds Alena and Kristine slept in for years. Kristine has now been sleeping in the canopy bed that Alena was using during her illness. We told Kristine she had to choose between the bunk beds and the one she was using. It was a hard decision because there are memories and emotions attached to both. But 3 beds for one child is just too many beds. It is very sad for me too. When I walk in that room and see the bunk beds I remember reading stories to the girls at night there, and talking to each one, Alena on top, Kristine below. I stood by those beds many nights giving reassurance, medicine, singing them to sleep and feeling thankful that I could do those things for them. Now the beds will be sold to a new family. Objects are just things but we can attach such importance to them. Without the beds, there are still many, many things to remember Alena by. There are so inadequate, but all that we have left.


May each of you have a blessed Christmas season with the ones you love. Please remember to pray for those who are suffering from illness during this holiday, especially the children. If you wouldn’t mind, please say a prayer for our school principal who just learned that her father is dying from a brain tumor and then less than a week later learned that her mother has stage four lung cancer. We can all be thankful for the loved ones we have shared so many precious hours with. Someday soon they could be gone, and the time we have together is what we will always hold onto.


 


Love,


Carol

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