Kelly was no stranger to the hospital when she was dx in June of 2004. As a matter of fact we knew before she was born that she would be spending a lot of time there. at week 25 in my pregnancy, I knew something was wrong. I had been putting on an enormous amount of weight in a short period of time. An ultrasound determined that I had a large amount of fluid around Kelly. Further tests revealed that Kelly had a blockage in her intestine called duodenal atresia. The fluid was amniotic fluid her body could not take in. She would need surgery the day she was born to open the blockage or she would not live. Then one day before my tenth anniversary we got the rest of the news. Kelly would be born with Down syndrome. Soon we also learned she had a malformed heart and would require open-heart surgery.
Through all this, my family stayed strong. Our friends and neighbors gave us limitless support. I had rides to the hospital when my husband-who frequently traveled-was out of town. Meals were delivered, my younger children were cared for.
Kelly was amazing. Always doing better than expected. Although she was 5 weeks premature, she breezed through her surgery and was home sooner than expected. She would need more surgery six months later for adhesions. Then she was hospitalized several times with mystery viruses that caused severe dehydration. She needed surgery on a clubfoot and had ear tubes placed. In February of 2004, as she was just beginning to learn to stand, she endured open-heart surgery. Though she did well in surgery, she began to have seizures and coded twice. I couldn't believe it would end like this. And it didn't.
Once home from that surgery, she started to walk again. Gained weight and was her normal darling self. A prankster, she loved to sing. She wasn't really saying much yet. She could say daddy, but not mommy. She was crazy about dancing (which she did scooting on the floor), loved her big brother and sister and her cat, Zak.
About a six weeks after she came home from the hospital we went in for routine blood work. The hospital called and asked if she was feeling ok. I didn't notice anything, so I said yes. They said her white count was extremely low-but maybe it was a virus and to redo the blood work in two weeks. I was getting ready to have major surgery, so I made arrangements to have my husband bring her in.
While I was recuperating from the surgery, Kelly seemed unhappy. Everyone thought she just missed me. When I got out of the hospital I noticed she wasn't willing to stand as much. She was sleeping a lot - which we attributed to learning to walk tiring her out. She had a new physical therapist she refused to do anything for. So I got her a new therapist.
When it was time for new blood work, she wasn't feeling well. I called the doc and they said to hold off on the blood work, because since she was sick. it would probably look odd again. I took her in and she had a pretty bad ear infection. She also looked pale. This went on for a couple weeks. I wanted to take her to the hospital, but my husband thought I was overreacting. Next she saw an ENT. She was so sick he saw her daily for three days trying to treat this massive infection. He noted how pale she was. On the third day, little bruises showed up on her wrists and her forehead. We had trouble getting blood - but had when she was in the hospital too, so they did a finger stick and pumped her finger to get blood.
I waited all day for devastating news. I knew kids with Down syndrome had a greater risk of Leukemia. I knew bruises were a sign. But, no word came, so I thought I was over-reacting. She even ate a little-the first time in days. At bed time-I was still worried about how sick she was and made a bed on the floor beside her. By midnight I knew something was terribly wrong. She was moaning and gasping. I grabbed her and ran her to the hospital. My husband stayed behind with the big kids.
Within five minutes of arriving to the hospital I was told it was probably leukemia. She now had petechia all over and many more bruises. They were having trouble stabilizing her. They couldn't get a blood draw. I told them about the draw earlier that day and they called the lab. No one had run the test! As they were running the tests I called my husband and my neighbor, who ran over to stay with Reed and Regan. I called my mom. The doctor came in to confirm that she did indeed have leukemia before anyone even made it there.
It took three transfusions to bring her hemoglobin up. At dx it was 1.7, her platelets were zilch and her white count was 187,000. She was in liver failure, heart failure and kidney failure. Had I waited any longer to bring her in, she would have probably died that night.
I don't blame myself though. I was on a lot of painkillers from the surgery I had just had. I had just ruptured an ovarian cyst that very day! We were so beat up, we didn't really know what to do. I do think that the docs should have picked it up sooner and not told us to hold off on the blood work.
What was most shocking to us was learning how long she would be treated. My father died of lung cancer, so I was no stranger to chemo. But, I couldn't believe my beautiful 19-month-old would have to undergo this till she was four! I was so angry! So overwhelmed! Hadn't she suffered enough?
I have to say though, that by the time she was dx, we had the hospital stay thing down pat. We shifted right back into survival mode. Our friends and family amazingly were still there. We were blessed with a great support network and still are.
Robbin