Wednesday

Okay - so it's been a while since I posted. Holly - have fun in Hawaii! PL - have a great turkey day at home. Wish we could just show up with out the flight and all that jazz... Thanks Sheila, for your offer of sending a copy out. I hope people take you up on that. I got three copies of the paper, Kevin took one to work and I haven't done anything with the others.

I feel a little pitiful tonight. We had a great appointment on Monday and actually found an Endocrinologist we really connected with! This was very exciting! Until we met Dr. Jeha we hadn't really gotten a good explanation for Hans' Hypoglycemic incidents. After meeting with him it seems to make a bit more sense. We also had a good appt. Tuesday with Dr. Russell. She actually seemed to have lightened up her attitude. She said we'll just take the Accutane on a monthly basis. This month we'll be off. So, maybe we can enjoy the month. I thought - okay -- no planned visits for four weeks. Will we make it ? Then, my cell phone rang. It was the clinic - Hans' Potassium was low in his labs, have him come back tomorrow to retest. So, we went back in today. We had them redrawn and I was sure they'd be fine - just a bad test - he's acting great. But no, they actually dropped .1! Ugh - so the docs and Shari did some thinking and consulting with Endocrine and they figured that Hans has been having too much Florinef, one of his daily steroids, while he has been on his stress dose of Hydrocortisone. So, we're going to try to give him some oral Potassium and then cut his Florinef in half and go back on Friday! UGH! I just counted it all up and we've had 8 medical rendez-vous in the past 11 days, by Friday it'll be 9 in 2 weeks. Before he had his incident last Sunday only two of these visits were on the books. It's pretty exhausting! I just can't believe Kevin is making it in to work! He has become quite the papa bear looking out for Hans, and his instincts were right on the money about the Potassium. Poor Elle was sick on Monday, and off today, so she accompanied me to two of these visits. But, she's a pretty good sport. They both are really.

For Thanksgiving, Kevin and I hadn't planned much. Planning seems to be such a joke lately, that we actually waited until today to order a pre-prepared Thanskgiving dinner from the grocery store. Turkey always sounds good though!

Thanks for your prayers. Please try to say a special prayer for our dear sweet little friend Chloe today. She has relapsed Ewing's Sarcoma and the docs have just told her family that her current treatment plan isn't quite doing the trick. She's seeking the advice of a new team of doctors and looking into some experimental treatments. She is one of the sweetest little girls I have ever met. Also, we can always think of our TCH friends with relapsed NB: Carlie, Ryan, Colby and Erin, as we also pray that Patrick, Hans, Roman, Will and Chloe will remain "NED". Thanks!

Lara