Aliyah L. - Quilt Finished in 2008
Born: November 21, 2005
Illness: Embroyonal Rhabdomyosarcoma with Anaplasia, Hydronephrosis
A Thank You From Aliyah's Family!
May 23, 2008
That quilt is beautiful, Thank you! Aliyah's Family
Aliyah L.'s Story
Written by Aliyah's mom in April 2008
On December 1st, 2007 my 2 yr old daughter was diagnosed with Stage 3 Rhabdomyosarcoma with anaplasia originating in her peritineal cavity. The tumor was 8 cm and grew into her intestines, bowels, ureter, uterus. It wasn’t resectable because they have to cut an inch around the tumor and it was located too close to the aorta so we started her on the Children’s Oncology Group protocol for Intermediate Risk Rhabdomyosarcoma. This included 35 days of radiation where they had to completely knock her out under general anesthesia and 43 weeks of chemotherapy.
When they initially attempted resection she almost bled out because the surgeon said the tumor was like "sewing pudding", he also told us the tumor had burst in her abdomen. After the surgery she developed peritinitis and almost died. It was the most scary thing I have been through in my life. They put in an NG tube (down her nose) and blood started coming back up. She was in the hospital the first time for 3 1/2 weeks. She was released on Christmas Eve.
Then she stopped eatting. She had already lost several pounds from the first hospitalization, they said she was anorexic. This continued. During this time frame we decided we had to switch her care to hospital that specialized in pediatrics. Our city hospital "tries" to accomplish this but it wasn’t going very well. Initially they were having us drive off site to get her radiation and there were no anesthesia personnel so I was having to give her Chloral Hydrate. It tastes terrible so she would throw it up and we would have to give it to her again...she would throw it up again...finally she would pass out enough for them to do her radiation.
The problem was we were already having a difficult time getting her to eat at all and now we were having her throw up everything we had finally gotten into her belly. She got even more skinny. Soon she stopped eatting and drinking at all. That was when we decided we had to move her. We couldn’t continue to torture her like this anymore. She had to be put inpatient again...this time for 2 1/2 weeks while they inserted a G-tube into her stomach so we didn’t have to rely upon her to meet her own nutritional needs. Now she had a Medport and a G-tube...well you know what was coming...anesthesia was having a rough time placing the trach tube when they put her under every day for weeks...soon she was having breathing difficulties and they wanted her to get a permenant trach placed.
I wasn’t sold on this so I forced them to get the ENT to scope her esophagus to prove to me that she now had permenant damamge from the repeated intibations. He didn’t agree and ordered them to use an LMA instead of trach tube. We finally finished the radiation the end of February. This was a horrible experience. The staff was great--we love her Radiation Oncologist doctor but it was overall like torturing her on a daily basis. She had to be NPO every night and we had to use her feeding tube in the day. She is a toddler and wouldn’t slow down for the pole. In fact, she kind of likes escaping from her tubing and something pulls it out. Luckily she hasn’t pulled it completely from her tummy yet. She has chemo daily about every 3 weeks. One day a week all of the rest of the weeks. So many tests. The tumor didn’t shrink as much as they need or but we have to get it out because of the anaplasia (rhabdo grows like wild fire but I guess with anaplasia it is in hyperdrive and very deep into the DNA). I have to get back to work. I haven’t been able to work since December 1, 2007.
