fEvery now and then there is a story that comes along that puts life into perspective and hurts your heart all at the same time. My story of Daisy Martinez Scott is such a story, and it is one that I am absolutely proud to bring to all readers, not just subscribers because it is a story that everyone needs to know.
Because Daisy and her family are hurting, and you and I need to figure out what we can do to ease their burden. It’s not that Daisy isn’t truly a message of hope because she is. But even the bravest among us have their down days, their days filled with fear. Daisy is no exception.
Daisy Marie Martinez Scott has an unbelievably rare condition called Carney Complex. I’ve told you that before. In fact, Carney Complex is so rare that there are only a few hundred cases worldwide. Lately Daisy’s condition has worsened as have her finances.
“I had my last open heart surgery on March 11, 2014, for a recurrent heart tumor from 2011. I go every year the National Institute of Health (NIH), and last year in January they thought they might have seen a tumor, but it was too small to tell.”
Daisy’s husband, Corey, left the military in June of 2015. Less than three weeks later, they had no health insurance.
“I am supposed to have an MRI every year, and I was due to have one in July to see if it was a tumor and if it was growing, but we did not have the money to do it so we did not.”
Then in January, Daisy flew back to NHI by herself to finally have the MRI done…out of pocket. They did an echocardiogram first.
“I’ve seen those tumors so many times that even I recognized what I was seeing on the screen. While I was having the echocardiogram done, I told the tech that I could see that I had a heart tumor. He stopped what he was doing and told me that I had put him in a bad position and that he would have to call a cardiologist. The cardiologist just confirmed what I already knew, but he ordered an MRI to be sure…but I already knew…”
Daisy is supposed to take an injection every month to slow down the rate that the tumors are occurring. The cost of each injection is $6,000.00
“The last time I had an injection was in June because Corey was out of work from June until October. I have been fighting with our insurance company since October, trying to get them to cover this medication. I have called every single day, multiple times a day. I have tried crying and everything else I can think of to try to get them to understand how important this medicine is to me.”
Daisy was able to get an injection last month while she was at NIH because the hospital provided to her free of charge.
“All of the other months, I was without the injections, but just a few days ago, I finally had a breakthrough, and our insurance company has agreed to cover the cost of the injections.”
One would assume that any shot costing $6,000.00 would have to be something pretty exotic, right? Not so. Daisy can actually order the medicine and pick it up at Walmart, or she can even have it drop shipped to her home, where Corey gives her the injection.
“When they told me that I have to have another surgery, they also said that I should come home to Texas and have it here at UT Southwestern in Dallas. I have now seen a cardio surgeon, but this tumor is so close to my lung that he wants to have a plan in case he has to take part of the lung.”
So, bless her heart, she does the hardest thing of all…she waits.
“It’s pretty tough,” the young woman admitted to me. They told me that I absolutely have to rest and no working.* That makes it really hard because we only have one income. I’m not even supposed to lift our two year old while I wait for the surgeon to call and tell me the plan.”
Daisy also has the same two tumors that we discussed in our last interview, but those have not grown and are still responding to medication.
“I know that I don’t need to worry, but I do. I dread the surgery, and then, I know that I won’t be able to sit down and play with our daughter again for a long time. She is so young, and she needs me and doesn’t understand…” she trailed off, and I could visibly see the sob that that was desperately trying to escape.”
But children are resilient, and at the moment Mommy and Daughter play doctor games, with little Denver posing as the doctor who is taking care of Mommy.
“I try to make it fun. She was going to ‘school’ when I worked, but with me out of work, I just can’t afford to pay for that now. So she is home all day with me, and she actually plays well by herself and entertains herself quite well.”
When the call comes, Corey and Daisy will have to go, leaving little Denver behind with Daisy’s mom.
“Of course, Corey will have to have some time off work. My mom will have to have some time off to take care of Denver, and that is a huge stress because Corey just has to be able to work.”
And it was at this point that I simply stopped typing. The stress on this dear young woman’s face is hard to look at, and the shaking voice broke my heart. I know that the tough Daisy, the fighter Daisy that I know and love will surface again, but for this day, it was all quite simply too much for her to continue to discuss.
I did tell Daisy that as soon as she knows the plan and knows what her insurance will cover, I know that there are many of us who will want to help ease the burden. This little family has enough strikes against them at the moment. Money should not be one of those.
*Daisy has requested a doctor’s release to allow her to go back to her job at Bayer Motors. Of course, because the family is so far behind on its finances now, what income she will create will go to paying past debts.