This is Maggie's story direct from her Mom and Dad. They post a Wordpress blog here: http://theruds.wordpress.com/
Maggie is just one of the thousands we work so hard for. Her story has so much meaning to Music Saves Lives.
Today Maggie had her 71st blood transfusion. That means 71 people donated to save her life so far. It's so important that we make this summer a summer to remember. Can we hit 80,000 blood donations with the Vans Warped Tour and Mayhem Festival? Not without your help.
Maggie started giving us trouble from the time she was in the womb. At a routine 10 week ultrasound she was found to have a large Cystic Hygroma on her neck . This led to 9 months of worry, tons of ultrasounds, many fetal echo-cardiograms and a CVS test. She kept us on our toes but when she finally entered the world on August 19th, 2008 she was not only the most beautiful little girl I had ever seen, but she also seemed completely healthy. My OB and his office all referred to her as a miracle baby, and we were so happy she was ours.
We brought Maggie home from the hospital when she was 3 days old with a clean bill of health..we quickly settled into life with 3 kids. Little did we know everything was about to get scary yet again. On September 22nd when she was just shy of 5 weeks old I decided to take her in to the pediatrician’s office. She had been fighting a cold and although I knew colds were nothing to panic about, I couldn’t shake the feeling of worry. We had a late appointment and so my husband came home from work and stayed with the boys while I brought Maggie in for what I was sure was going to be a quick appointment and assumed her pediatrician would tell me to stop being so worried about her..that she was fine.
As you may have guessed, things didn’t go exactly as planned. Her pediatrician was concerned. Maggie had hardly gained any weight at all since being born, despite eating every 3-4 hours. He thought she was pale, he heard a loud heart murmur and mentioned something about how the whites of her eyes were blue. He thought it was best to have some lab work done and told me as results came in he would call me. Maggie and I then left his office and headed for the lab, they did a heel stick to collect blood for the various tests they were running…I remember her little heel would not stop bleeding. The lab tech seemed a little alarmed and told me to make sure I informed the pediatrician about this. 5 band aids later and we finally got out of there. The whole drive home I was in a panic..I called my sister, my mom, Andy..they all told me everything was fine, this was just a precaution, but mommy’s intuition told me otherwise.
About a half hour after Maggie and I had returned home my phone rang..it was her pediatrician and as soon as I heard his voice on the other end I knew my intuition was right. He told me Maggie’s labs were very alarming and I was to immediately bring her to the emergency room where he would be waiting for us. My heart sunk the most when he told me to make sure I brought my husband with me. 10 minutes later as we were getting ready to leave he called again, this time he said to hang up and call 911, this was serious enough that she needed to come by ambulance. I am pretty sure it took my 5 tries to actually call 911 because my hands were shaking so bad.
We arrived at the hospital and the craziness began. She was immediatly rushed to the Pediatric Intensive Care Unit and they started the poking and prodding. All I could do was stand by the window and cry. I felt so helpless. They finally told me she had a hemoglobin count of 3, this is critically low. Her heart was enlarged from working so hard to pump around such a small amount of blood. They started a blood transfusion..the first of many. Maggie spent 3 days in ICU and then another day in the regular pediatric unit before being discharged. We continued to get Maggie’s blood tested constantly and then a few weeks later she had her first bone marrow biopsy. She was eventually diagnosed with a very rare blood disorder called Diamond Blackfan Anemia. So rare that she is one of 750 in the world with this disease. In a nut shell, having DBA means that her bone marrow does not produce it’s own red blood cells.
Since being Diagnosed Maggie has had to get blood transfusions every 2 to 3 weeks..we are up to 64 so far. She has had numerous bone marrow biopsies, a broviac central line, a port,a trial of steroids (didn’t work), hospital stays for low counts and infections, 6 echo cardiograms, ultrasounds of her spleen and kidneys along with an ultrasound of her brain, a liver biopsy and 2 MRI’s of her liver, multiple visits to the ER, 3 VCUG’s and probably at least 200 blood tests. She is my HERO.
Right now Maggie has what they call “Iron Overload” from all her blood transfusions. Iron has built up in her liver and other organs. Because of this she is on a medicine called Desferal for 10 hours a night, 5 nights a week. She gets this subcutaneously in her thigh,which means 5 nights a week she sleeps with a needle in her leg while the medicine infuses. It causes pain and swelling in her thighs yet she rarely complains about it. She is so strong.
A bone marrow transplant is the only “cure” for DBA, and it has been recommended for Maggie. Her brother Lucas is a perfect match and should we do transplant he would be her donor. Right now we are unsure if transplant is the way to go for Maggie but we are talking about it. I know that no matter what comes her way, she will get through it.
No comments:
Post a Comment