Tuesday, October 26, 2010

JDRF Walk Day 2010 Golden Gate Bridge

I had so many plans for our first JDRF Walk. I was going to write a letter worthy of the Oprah show. Make a video worthy of an Oscar. Raise thousands of dollars.

And every single time I sat down to work on my Oprah letter and Oscar nomination worthy video, I found myself emotionally crippled. Overwhelmed by grief and sadness. I couldn't look at the pictures and the words that came out seemed sad and desperate. Not inspirational and heartfelt. I agonized and felt guilty. Here I claimed I would do anything to find a cure for our son, yet I couldn't write a letter or make a video and could barely bring myself to sign up? I could talk the talk but not walk the walk. Not like me at all.

I needed a new perspective. I forget that it has been eight months since our lives changed forever. Then with our recent scare with L it brought up so many emotions from T's diagnosis and the fear and anxiety I feel for her overwhelmed me. Instead of denying the feelings, I let them come. I decided that this year the walk was for US. It was to acknowledge all we have been through and celebrate the triumphs. To acknowledge the challenges and tribulations and how we keep conquering them. We walked to show how grateful we are that we are together and healthy. We walked to honor T and what an amazing job he is doing and for his brother and sister and all their support.

Here is a video of our JDRF Walk Day 2010.

We had an amazing time, walking with amazing friends (Go team Schuwalker!), meeting new people and feeling like part of a world community. T's clinical trial team was there and we had a happy reunion. They were amazed at how well T is doing.

We continued our celebration by visiting the de Young Museum in San Francisco and seeing beautiful tribal artwork from Africa.  We didn't bring a change of clothes, so we wore our walk shirts to the museum.

The highlight of our trip was when a beautiful woman walked up and said, "So did you guys walk today or are you all wearing matching shirts to find each other in the museum?" We explained that we had walked today and she went on to tell us that she had been Type 1 for 25 years. Diagnosed when she was 14. She had traveled all over the world, to Europe, and Asia, and had just returned from Africa, had two healthy kids and told us she had never been in the hospital for Type 1. She gave T advice about college, driving and how to "manage" his parents. I found it interesting that she said that Type 1 is way harder for parents, than it is for the kids who have it.  She wanted T to know that Type 1 would never stop him from doing anything he wanted to do. I hugged her and thanked her. She had no idea how badly I needed to hear that. And T was lit up the rest of the day. To the beautiful, world traveling, wedding attending, fellow T1D woman from Texas- THANK YOU.

Then we played and splashed in the park in the rain. We finished off our day with our favorite Burmese restaurant- where we SWAGed with awesome accuracy (or just plain dumb luck-but hell, I'll take it)!

I am so glad we went. We had a wonderful day. This was a practice video for next years donation drive video. I am preparing my speech all ready.

Thursday, October 21, 2010

Results Without Answers

I have sat down to write this post several times, yet I keep finding myself unable to put my thoughts together. My thoughts and feelings are scattered like dandelion seeds on the wind.

Last month our daughter had a frightening episode of hypoglycemia (low blood sugar). You can read about it here.  In the back of every Type 1 parent's mind lurks the fear that your non-diabetic children will develop Type 1. When your child is first diagnosed there is a certain amount naivety, you just don't know all the intricacies of having Type1. You don't know how much work it is. You don't know how scary it can be. You don't realize the impact it will have. I felt like the realizations came along the same time as my resolve and strength when T was diagnosed. Facing a possible second diagnoses, that naivety is gone. You know how bad it can really suck. You know the fear, the anxiety. You know the impact it has on your child, you can see into the future and imagine what the lows will look like, how the highs will feel, because you have seen it before.

We had L admitted to UCSF for further testing. She fasted for 22 hours in an attempt to create a low blood sugar. She was amazing and never complained, never cried. The staff fell in love with her. They were so impressed with how she handled everything. She watched as they put the IV in and made jokes about her blood. She rocks. Parenting her is such a gift.

She never did have a low blood sugar, we were relieved that her body seem to do exactly what it was supposed to, but worried to have not found definitive answers. Before discharge we weighed the options. There are some blood tests that can help determine your risk of developing Type 1 diabetes. They measure the amount of autobodies in your blood. There are four different autobodies that can be tested. The tests are not perfect and there are only a few labs in the US that perform the tests. L and our other son C are both enrolled in a clinical trial called TrialNet that tests their blood every year until they are 18 to test for these autobodies. Both kids were tested in March of 2010 and the results were negative for autobodies. Indicating that their risk for developing type 1 was very low. That can change at anytime.  Researchers are using the study to try to determine how and why people develop autobodies and if they do, if it is possible to delay the onset of Type 1.

We decided to run these autobodies tests again on L. The blood was sent to a lab that is different than the TrialNet lab. We had no idea it would take weeks to get results. L has not had any low blood sugars since her hospitalization. We only test her blood sugars if she seems symptomatic for highs or lows or if she asks. We have seen some numbers in the 190's that have created concern. (normal is 70-140) Last Friday L and C 's school had their annual huge fundraiser, a Walk-a-thon that they entire school participates in. C and L both walked 10 miles to support the school. It was half way through when I got an email from L's Dr. with the results. Two out of the four of her autobodies were elevated.

The normal GAD value range is 1.0 or less. L's was 1.8.
The normal ICN value range is .8 or less. L's was .9

Dr. G went on to explain that although her values were elevated, he was not comfortable calling them positive. He explained that this lab is not as sensitive or advanced in technology as the TrialNet lab and that the results are not as precise. He felt that her values were not "off" enough to say that she she is definitely positive. He also said he was concerned to see that they were elevated in combination with the higher blood sugar values. His advice was to continue careful monitoring, testing her blood sugar when she seemed symptomatic, and randomly 2 hours post meal and fasting every week or so and keep track of the numbers for trends. If we start seeing numbers in the 190+ range longer than two hours after meals or higher fasting numbers then we will reevaluate. We will retest through TrialNet in March or sooner if necessary.

I feel like I was prepared for a positive or a negative result. I am grateful it wasn't positive, but I really had hoped for a negative result. This in-between isn't what I expected. My emotions run the gamete ranging from grateful and hopeful, to angry and heartbroke. I can't get the look on T's face out of my head when we told him the results.

Here we are with results without answers. Next time I find a dandelion and blow on the seeds, I think you all know what I will be wishing for.