Skip to main content

Blog housekeeping

First, let me apologise for not blogging more this week. I actually have a lot to say, but am very crunched for time. My boss had her baby on Monday, a little girl of six pounds and 18 inches long. She sounds small, but her mom is tiny. If she’s been any bigger I would have been worried! Grin!

This means that at work it’s just me, our publisher, and our editorial assistant. I’m swamped. I’m going to be at NIH next week, so not only am I doing two jobs, but I’m going to be out a week. And, I ended up spending the better part of yesterday at KUMed for my immunologist appointment. I also finally got to visit Annette.

So, here are just a few updates and teasers…
1. Thanks to everyone for praying for Annette. It means a lot to her. They’ve revised her diagnosis – they now believe she’s probably had leukemia for several months and that indeed there’s probably a genetic link. They believe that instead of AML that she actually has ALL, which involves the lymph nodes. They’ve told her that the bad part of ALL is that it often travels to the brain and causes brain cancer. But, the good news is all the tests they’ve done show no cancer in her brain. She’s started chemo and today they’re putting some kind of port (sorry, didn’t totally catch this part yesterday – I was a little shell shocked) in her chest as well as in her head. They’re going to give some type of chemo drugs right into her head to be sure the cancer doesn’t spread to her brain. They told her that if the cancer doesn’t spread to her brain, they give her a 90 percent chance of being “cured.” But, if the cancer does move to her brain, the odds go down quite a bit. We had a bit of an emotional night.

I think so much has happened in the past week that there hasn’t been time for everything to sink in yet. I’m really hoping I can go see her before I have to leave for NIH.


2. There was a front-page story about HPS in one of the newspapers in Puerto Rico today. The Puerto Rican HPS Family Conference is coming up – so I’ll blog a little about that when I get a chance. I’ll post the story, but Lord knows I can’t read it! Carmen had to translate it for me.

3. I’m very excited as a sports celebrity has shown an interest in helping out the HPS Network! I need to pull together a few things, and then I’ll blog all about it soon.

4. Several of my friends have gotten blog fever in the last two weeks. I am going to add your blogs to the blogroll! I just haven’t had time yet! But, they’re coming!


Comments

april penny said…
Hi, I stumbled across your site and noticed in your profile that you were from Kansas and that you liked Waterdeep. Me too! :-) I'd never heard of HPS before and I wanted to let you know that I prayed for you.
Kathryn said…
I will continue to pray for Annette, her family, and you. I know it must be a shock. Does Annette know and follow the Lord?

I hope you feel better soon and that your trip to NIH is productive.
Hey Katy,
Yes, she does - thanks!
Unknown said…
We too, are praying for your friend Annette. How awful that is for somebody so young to have to go through. And for her kids as well. We will be praying for you too. I am sure this has added some stress to your life as well. Take Care!! C & C

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for...

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria...

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.