Thursday, February 24, 2011

JDRF Vs. Faustman

About three weeks ago I came across a post by DOC founder Allison Blass. I was very interested to read it for a couple of reasons. One, it talked about losing faith in a cure for Type 1 diabetes. And, two, it was written by Allison. I don’t really know Allison, but I kind of do in a round about sort of weird internet way. Allison’s blog is one of the first blogs I started reading when our world came crashing down about 5 and ½ years ago. She also interviewed me one time for a magazine article that she wrote. And, we even got a Christmas card from her once. So, I was interested to see what she had to say on the subject. I think she did a great job writing the post. She was able to state why she felt how she did without begrudging others for feeling differently.

Prior to reading her post, I had read a little chatter on the internet about JDRF saying they were not as focused on a cure, or something to that affect; or more like they were focusing on a cure still, but also focusing on better treatments of Type 1 diabetes. I never gave it a second thought, really. It wasn’t news to me. It didn’t anger me. It didn’t shock me.

You see, when Riley was diagnosed in October of 2005, the minute we got home from the hospital I began to scour the internet for any information I could find. Inevitably I searched about a cure. Of course, JDRF was one of the first web pages to pop up. After all, JDRF is an acronym for Juvenile Diabetes Research Foundation. I read about them. I read their mission statement. I did my research on them.

I also found some articles written about research being done at Massachusetts General Hospital by Dr. Denise Faustman. I read about her research. I read about what she had done with mice. It all made sense to me. Something just clicked inside of me and said, “This woman is dedicated to finding a cure”. And, I was hooked. She hadn't even begun human clinical trials yet.  The phase I of her trials began in January of 2008.  She is now raising money to fund Phase II of the project. 

The next year, one day after Riley’s one year anniversary, I held the 1st annual Walk of Hope. Every cent raised went to Dr. Faustman’s research. I’ve held several other walks since then. All of the money went to Dr. Faustman’s research. Every walk, every fundraiser, every penny saved in Riley’s “hope jar” (featured in my blog profile pic), goes to her research. And, it always will, until the research ends.

Have I supported JDRF? I guess I have a little. I have donated to others who have walked to raise money for JDRF. Some people I know and some I don’t. Riley had a T-shirt sent to him several years ago by a little boy who he will probably never meet. I “met” his dad through his blog and donated to his walk. In turn, he sent a T-shirt to Riley. JDRF is prominently displayed on the shirt. Riley wears it with pride.

I don’t have anything against JDRF. But, and it’s just my personal opinion, they are not really focused on a cure. There, I said it. I know that infuriates some people, but that’s how I feel and I have felt that way for over 5 years now. I do believe they are very committed to finding better ways to manage diabetes. When Riley was diagnosed, continuous glucose monitors were talked about, but not on the market. I remember that even back then JDRF was throwing around an idea about a closed loop system, AKA: an artificial pancreas.

I feel the same way about it now as I did then. It’s quite simple really. That’s not a cure. I want a cure. Period. I want my little man to live his life without depending on a drug to live. And, I’m not being dramatic here. Without insulin, Riley would die. I want him to know what it’s like to eat a snack without having to jab himself with a needle first. I want him to know what it’s like to not be attached to a machine 24/7. I want him to play sports without worrying if he will go low. I want him to have a functioning pancreas again. To me, anything short of that is just a band aid. Band-aids come off. They have to be reapplied. They cover up wounds. I don’t want him to be “wounded” anymore.

I know that JDRF also funds research projects searching for a cure. (As a side note, they haven’t given one cent to Dr. Faustman.) But they put the majority of their money into projects such as the artificial pancreas. And, that right there is why I have never had a fundraiser for them. I want ALL of my money to go towards a cure.

Don’t get me wrong, I am grateful for organizations like JDRF that are trying to find better ways to manage diabetes. Like I said, when Riley was diagnosed you couldn’t even get a continuous glucose monitor. Now, many people have them. And, in the years since they came onto the market I’ve been told their accuracy has improved quite a bit. Not only that, I now bolus Riley with his pump from across the room via his blood sugar machine. It is quite wonderful.

And, all of this technology is great because it helps improve the lives of those touched by this disease. It helps control sugars, which in turn decreases complications and increases my little boy’s now shorter than average lifespan.

But, in the end, he’s still attached to his pump 24/7. He still could go into DKA from the flu. He could go into a coma from a low. And, my biggest fear, he could go to sleep tonight and not wake up in the morning. All because of Type 1 diabetes.

As parents we all want the very best for our children. We want to see them succeed. We want to see them live their dreams. Some think that better technology is the answer.

Me? I know Riley can live his dreams with or without Type 1 diabetes. But, I would rather see him do it without an insulin pump tethered to his side, without the worry, the emotions, the complications that come along with this disease.

So, I will continue to hope. I will continue to pray. And, I will continue to use that improved technology until the day that Riley does not need it anymore. And, I firmly believe, with all my heart, that Dr. Faustman’s research will lead us there.

**(I have recently began a letter writing campaign to raise money for Dr. Faustman’s research. If you would like do donate, please click here. All donations are tax deductible.)

Thursday, February 03, 2011

Home is Where the Diabetes Supplies Are

We just moved into a new house. We have been renters our whole married lives and finally made the leap into being homeowners. I love it. It's so nice to be able to paint whatever color I want and hang as many pictures as I want. There is also something special about just knowing that it's ours.

But, in the midst of all the bliss of finally having our own home, diabetes keeps poking out its ugly little head.

First, it was during the packing phase. I had so much stuff that I'm not sure why I ever had in the first place, let alone know why I kept any of it. Riley's diabetes supplies were in the living room closet. They were kept together for the most part, but over the years some things had gotten separated from the pack. I found too many meters to count. I threw out some and kept some. I had to debate on which ones to scrap. Finally I just got rid of the older ones. After all, we all know that meters are a dime a dozen. Companies are happy to give you free meters. Where they really make their money is with the strips anyway.

In that same closet I came across Riley’s bag. It is a little black nylon lunch bag. We used to keep all of his supplies in it, insulin, syringes, juice, alcohol swabs, ketone strips, glucagon. We took it wherever we went. That bag has been places. I’m not much of a purse kind of girl, but a few years into his diagnosis I broke down and started carrying one with me. It’s very practical for carrying all the needed diabetes equipment. When I finally gave in and started carrying a purse, we retired that bag. After I pulled it out of the closet I turned to throw it in the trash bag next to me. I held it there and let it hover of the bag for a second before I turned and tossed into a storage bin that would be put in the attic. I just couldn’t bare to throw it away.

When I cleaned out the kitchen cabinets, up in the far corner in the darkest recesses of one cabinet I found some more diabetes loot. I then remembered that when Riley was first diagnosed we kept his supplies in a kitchen cabinet. That was back in the injection days. Once he started on the pump there wasn't enough room there for all the supplies and most were moved to the closet. I found a few strays lancets, some insulin syringes, and several alcohol wipes.

I reached in and felt around one last time before moving on. I pulled out 3 small slips of paper. I turned them over to see what they were and stared at them for the longest time. They were prescriptions given to us when Riley was discharged from the hospital. The date in the corner was 10/7/05. Suddenly, I was taken back to that day. I stared at the neatly printed words. They were written by a woman just out of medical school who was very unsure of herself. It took her forever to write the prescriptions. And, when I took them to the pharmacy they were written for over the counter things like alcohol pads, lancets, and ketone strips. They were returned to me and for the life of me I’m not sure why I kept them.

But, there they were, in my hand, a harsh reminder of the day he was diagnosed. All of a sudden I was bombarded with images from the hospital. I slept in the bed with Riley at the hospital. I remember the first morning I woke up and saw Michael sleeping in the chair. Riley was still sound asleep beside me. I woke up, looked at him, saw the IV sticking out of his little hand, and promptly burst into tears. All I could think was “It wasn’t a dream. This is a reality. My little boy will have to deal with this disease forever. It’s never going away.”

I got up out of the bed and tried to get myself together. I tried to stop the tears before anyone saw me. At that moment, the doctor who wrote his prescriptions walked in. She began to blab on about something and when she finally looked at me she saw the tears. She looked at me and said, “Are you crying? Don’t cry, everything is going to be OK.” She looked terrified because she didn’t really know how to handle a crying mother. At the sound of her voice Riley had stirred from his sleep. He sat up in bed. I quickly turned my back toward him and faced the wall. My back was to the doctor also. I forced the tears to stop. I had made a promise to myself that Riley would never see me cry about his diabetes. And, since that day, I’ve cried a river, no an ocean, of tears. But, I haven’t broken that promise I made to myself. I remember as I was turned around she kept droning on and on about something. And, all I could think was that I wanted her to shut up and leave.

All these memories came from just a few pieces of paper, memories that had been tucked in the recesses of my mind. Ones I hoped some day I would forget, but I know now I never will.

We are finally moved into our new house now. I had packed all of Riley’s diabetes necessities up in a box. Instead of unpacking them right away I let them sit in our closet for a little while. Eventually, I got tired of digging through them to find what I needed. I began to search for the best place to put them. I finally settled on a shelf in a hall closet. There they sit: sites, strips, IV prep, cartridges, Glucagon, old meters, a few syringes. They take up a whole shelf.

Once I got them placed in the closet I took the box they were packed in and threw it down the hall. Michael came in and asked what was going on. I told him I was angry. I was angry that I had to find a place for all these things. I was angry that Riley needed these things to live, angry that he always will. Angry that every house he ever moves into will have to have a special place for all the things it takes to keep him alive.

This is the just another example of how diabetes taints every aspect of life. It even makes its mark on a new house. It makes marks on Riley’s fingers, permanent scars on his skin. And, it has made permanent marks on my heart.