Meet Beautiful Alanya our Mighty Hero for January. Below her mother Kristine shares her story.
Alanya had been sick for a couple of weeks in May 2014, throwing up each morning and then being fine for the rest of the day. I took her to her pediatrician every week and they said it was ear infection, then stomach bug after some blood tests. Memorial weekend I took her to ER and they did CT scan since that was the only option we really had left. They found a mass in her brain and gave the option of life flight to Las Vegas or Salt Lake City children's hospitals. It was no brainer and we were on a jet to Salt Lake City to Primary Children's Hospital. She went into surgery first thing the next morning for a 7 hour brain surgery. The mass was almost as big as a baseball. The next day there was an MRI that showed there was still some tumor left and they felt it was best to go in and get as much out as possible. The next morning Alanya went into her 2nd brain surgery, 4 hours this time. The tumor was about the size of a deflated grape. There was another MRI and the doctors were confident they got as much as they could. She was in the hospital for over a week as the drain for the fluids in her brain had to be weaned out and she needed to show signs of progress for movement, speech, and eating. On June 5th we were able to take her home where her 4 year old brother was a great motivator in helping her stand and start walking again. We then had to wait for the final pathology to come back and it was Stage IV Medulloblastoma. The most common type of brain cancer in children. The oncology doctors plan was to start high dose chemotherapy right away to kill any cancerous cells left behind. In July 2014 I took Alanya to Primary Children's Hospital to start her first round of chemo where she was hospitalized for 3 weeks. It was so hard on her little body and being stuck in the small hospital room was hard for her to understand. She went on to receive 5 rounds of chemo over five months. In January 2015 she received a Bone Marrow Transplant, her own, and we stayed at Ronald McDonald House for the 100 day waiting period for her to be released to go home. Her brother, Markus (5), came up to be with us and try to have a somewhat normal life with weekly visits to PCH. On March 10, Alanya's 3rd birthday, we were able to leave and go home. Her 3 month scans were as perfect as we could ask for! Her doctor's were all optimistic for her future and having beat the cancer.
Diagnosis. Alanya had her 6 month followup MRI in August 2015 and it was not good. She had tumors in her brain and it had spread to along her spine. The most worrisome tumors were in her spine pressing against what controls bladder and her ability to walk. We knew she would need radiation and chemo and asked if it would be possible to do her Make-A-Wish trip to Disney World to meet the princesses. After an amazing week in Florida Alanya and I headed to PCH for port placement and the start of radiation. She was quickly losing her ability to walk so after only 3 radiation treatments she was hospitalized to get a quick MRI and the plan to get her in for a 7 hour surgery the next morning. The drastic changes and spread of tumors along her spine was shocking. Her surgery with neurosurgeon and orthopaedic surgeon ended up being a long 10 hours. Followed by 48 hours of her having to lay flat and trying to keep on top of her pain with morphine. After a week in neurotrauma unit the doctors agreed they needed to not wait the 2 weeks they normally would after such a major surgery and begin the radiation again. 2.5 weeks into radiation they did another MRI and there were not enough changes in the right direction and the doctor said it was UNLIKELY she would BEAT THE CANCER. Not zero but not great. That was the hardest thing to hear since her original diagnosis was pretty strong that she could beat cancer with high dose chemo. She finished her full brain and spine radiation in October (6 weeks staying at the Ronald McDonald House). The first time driving home after her spine surgery was almost 1.5 months after surgery and instead of 4.5 hour drive it was almost 8 hours because of all the extra stops. She is doing so much better now and it takes about 6 hours still but she doesn't scream it is hurting anymore. She did get a lot of her function in her legs back and her bladder function has gone back to normal. All things the doctors were unsure if she would ever get back.
Diagnosis. Alanya had her 6 month followup MRI in August 2015 and it was not good. She had tumors in her brain and it had spread to along her spine. The most worrisome tumors were in her spine pressing against what controls bladder and her ability to walk. We knew she would need radiation and chemo and asked if it would be possible to do her Make-A-Wish trip to Disney World to meet the princesses. After an amazing week in Florida Alanya and I headed to PCH for port placement and the start of radiation. She was quickly losing her ability to walk so after only 3 radiation treatments she was hospitalized to get a quick MRI and the plan to get her in for a 7 hour surgery the next morning. The drastic changes and spread of tumors along her spine was shocking. Her surgery with neurosurgeon and orthopaedic surgeon ended up being a long 10 hours. Followed by 48 hours of her having to lay flat and trying to keep on top of her pain with morphine. After a week in neurotrauma unit the doctors agreed they needed to not wait the 2 weeks they normally would after such a major surgery and begin the radiation again. 2.5 weeks into radiation they did another MRI and there were not enough changes in the right direction and the doctor said it was UNLIKELY she would BEAT THE CANCER. Not zero but not great. That was the hardest thing to hear since her original diagnosis was pretty strong that she could beat cancer with high dose chemo. She finished her full brain and spine radiation in October (6 weeks staying at the Ronald McDonald House). The first time driving home after her spine surgery was almost 1.5 months after surgery and instead of 4.5 hour drive it was almost 8 hours because of all the extra stops. She is doing so much better now and it takes about 6 hours still but she doesn't scream it is hurting anymore. She did get a lot of her function in her legs back and her bladder function has gone back to normal. All things the doctors were unsure if she would ever get back.
Alanya loves to sing, dance, and play with her brother. She plays dress up as Elsa, Anna, Rapunzel, and Cinderella. Since the spinal surgery she is able to stand against our couch and will sing and move arms to the Kinect game for XBox JUST DANCE. She is still unable to walk on her own but has come so far and is holding my hands and walking carrying her own weight. HUGE ACCOMPLISHMENT.
Alanya absolutely loves princesses. She looks up to her big brother Markus. In my own mind she is the hero and I have told her and asked if she understands what it means. She says yes and I have explained it to her. Again she is young and has favorite people and things. Markus who is almost 6 years old and adores his sister. He wants to help her walk every day and when she is only moving around crawling he is down on the floor beside her. He is supportive in his own way. He loves all the marvel super heroes and has worked hard to learn all the Princesses his sister likes.
My life revolves around the kids and it is Alanya's journey that I have to be right there beside her through the good and the bad. I have not had a job since Sept 2015 when I was let go from my marketing job for the second time when I realized I would be gone at least 6 weeks with radiation treatment. I am blessed to have had friends and a great mother help me financially to allow me to be the mom at home with the kids because of all Alanya's extra needs. It is difficult for me at times just because I know I am able to provide for my kids but have needed so much help recently. Looking for part-time work so I can be home and still be paying bills, which are still part of life even when cancer hits.
Through all of this cancer journey my children keep me going. I have also met so many families with different trials and obstacles of their own child health issues and we use each other for strength. We have experienced so much support from family and friends. I try to make every day with the kids positive and I try to be positive about the here and now as well as the future. It has been much more difficult the second time around because I truly thought she beat it the first time. I do believe in miracles and we pray that Alanya gets her miracle and we do everything possible to keep her happy.
Go to www.psiadoreyou.com and donate to Alanya. Every penny of your donation will go to Alanya and her family. All our love and prayers are with you. Stay Strong pretty girl!
