A special welcome to everyone to The Story Room......Hope and Courage. We meet Monday evenings, starting around 8:00 pm EST. A PAC2 member posts his/her story, and the rest of us can read and reply. The person "hosting" each week will stick around a bit to read and reply to your comments. The post will remain up all week for those who may not be with us on Monday evening, and comments will remain open, so feel free to leave a reply or message during the week. There are no rules in The Story Room. Please share whatever you want to share. Whether you are in the fight now, are off-treatment, have lost a child or even if the child you are "mourning" is still alive ("pre-grief" can be a very lonely and confusing time), you can come to this diary and process your story in whatever way works for you. We can't solve each other's problems, but we can be a sounding board and a place of connection. If you would like to volunteer for a specific date, please contact us at firstname.lastname@example.org - everyone is welcome. This is the schedule for the upcoming weeks, let us know if you would like to contribute.
September 26- Regina Siddiqui
October 3 - Stathi Afendoulis
October 10 - Laurie Morton
We are an “average” family… not really. My husband, Saeed,is from Pakistan and I am from Nebraska. We met in college, married and started a family. We had 3 children. Mikail and Kadin with their sister Aliyah in the middle. The “sweet spot” between her brothers.
We like to say she was born with extra spunk, an extra chromosome to be specific. She had Down Syndrome. All three were born healthy and beautiful.
We have lived in Colorado for almost 9 years now. Our first year was the same as any new family. Excited to do the yard, meet the neighbors and start a new school. In Aril of 2005 Aliyah had a fever that wouldn’t go away and she was cranky. A few day later her little arm was hurting so bad that there were tears just changing clothes and she wouldn’t use it any more. No infection , sprain or fracture. April 16 we found out what was causing Aliyah’s fever and pain. Leukemia. ALL. Our 6yr old daughter had cancer. She was scheduled for surgery first thing that morning, the first of so many.
Can I say the first year was typical for a Aliyah? I guess. The next summer was more then typical for her. She was admitted July 1 due to a bacteria that went to her lungs. She was in the PICU for almost 2 months on a vent. Her little lungs would not work for so long. The doctors said we most likely not be bringing her home. Saeed and I didn’t leave the hospital for week and weeks. The only prayer I could say was, “Please God hold her.” I said it over and over in my mind. We were supported so much by our family and friends. My parents stayed with the boys and got them through their days and weeks without us and their sister. After 78 days Aliyah’s spunk had paid off and we brought her home! She was weak and had to get strength back just to hold her head up. I remember her voice being small.
November 2007 was Aliyah’s last month of treatment and her port was removed in December. So fantastic! I started planning for our “average” family of 5 to get back to normal. School, soccer, dance class for Aliyah and looking into Special Olympics. She was even practicing a song to do in the talent show at school. After her stellar performance of “My Girl” she had back pain. Fear sets in.
Aliyah’s first relapse was in March of 2008 and she was now on the bone marrow transplant path. Both boys were tested to see if they were matches. Mikail our oldest was her perfect match! We had hope again! In October she had her BMT but it was a short success. She had relapsed again a month later. More chemo and bags of left over stem cells got her through the next several months. We knew then and was told that there would be no cure for Aliyah. We would eventually loose her to cancer. I still can not wrap my head around this.
By the summer of 2009 Aliyah was well enough to do some fun things! We went to a Wiggles Show and camping trip in Neb. with lots of family. Fall came around which is our favorite time of year for decorating, cooking and planning Halloween costumes! Moments that will have to last my life time.
By Christmas Aliyah’s little face was swelled and painful. Tests showed that Aliyah had leukemic tumors in her sinus, jaws, shoulders, breast bone, knee and one kidney. More chemo and a try at radiation. I knew we were some where close to going through the unthinkable.
My daughter had her 12th birthday with her friends and family on June 18. The next month, July 9th, she earned her wings with the four of us holding her hands, kissing her cheeks and telling her how much we loved her. Aliyah’s dad and I were finally able to hold her close and cuddle her.
Aliyah was a girly girl who loved wearing dresses, singing and dancing. Cooking, reading books (cookbooks) and teasing her brothers were highlights for her. She loved pink and never turned down the chance to do something crafty. She could watch any Shrek movie and Rachel Ray’s 10 minute meals totally impressed her. Remembering all these moments and keeping them close is what gets me through the day and it’s also what breaks me down.
Our life was dedicated to getting Aliyah through cancer and coming out on the other side with all 5 of us healthy and happy. We did not get the ending we prayed for or worked for. I said one time that we will never move forward. To me that sounds like I will have to leave Aliyah behind. I try to think of us as moving along. With Aliyah beside us. Proud of us just like we are of her.
I so appreciate this chance to share Aliyah’s story.
Regina ~ mom of 3
Aliyah sounds like a beautiful girl. She will now hold a special place in my heart, right next to my son Greg and so many, too many others. Always remembered, never forgotten, with us forever.
Thanks Diane, she was adorable. All three of the kids have dark features like their dad so I joke and say thy got my personality. So sorry to hear about your son...far too many children suffer. Children with Down Syndrom are 18 times more likely to get leukemia. Miss and love her everyday
So sorry for your loss! Know that you are not alone on this journey. Thank you for sharing your story and your daughter. I lost my 3 year old son Andrew to a brain tumor in 2007. I really related to your part about remembering, how it gets you through and also breaks you down. That is so true, I also loved the part of not moving on, just moving along, I will have to remember that :) It is so difficult, this new existence we have, the pain is hard but I don't want to be OK, because it will never be ok with out Andrew. Thanks for sharing and listening.