Angels In Voice

We are currently preparing for our 8th Annual Hermansky- Pudlak Syndrome Benefit Concert.  The concert will be held at our church, Thomas Road Baptist Church 5735 West Thomas RD. Phoenix AZ. on Friday March 23rd at 7pm.  We are really looking forward to this years concert.  Several of our friends and family will be performing in the concert.  We have started practicing our song selections and excitedly shopping for an outfit to wear.  Last year we raised 2,600 dollars and this year our goal is 3,000.  We really  would appreciate those of you who can make it, to come out and support us.  We are trying to get the word out here in Arizona.  We are praying that we will reach our goal. 

Yesterday, I had a bit of a bleeding episode.  I have problems with my skin being extremely itchy.   On Saturday night I scratched a bump on my leg and made it bleed.  I put a couple of band-aids on the little spot.  Woke up for church Sunday morning and decided to take the band-aids off before leaving.  THAT WAS A BIG MISTAKE!! We went into our Sunday school class and it started bleeding again.  Of course I didn't have anything with me.  So, I went to get dad and luckily the church had a first aid kit and I was able to get a couple of band-aids.  We put those two on and I went back into to class, After a few minutes it started bleeding through the band-aids.  I walked out again to ask Norm who was standing in the kitchen, for some more band-aids and he gave me three more to put over it.  So, I had a total of five on.  Well, I went back to sit in class and a few minutes later it bled through all of them, it started dripping down my leg.  I grabbed some tissues out of my purse to hold on top of the band-aids to keep from dripping all over everything.  I was trying not to get it on my skirt.  I was so embarrassed, I don't think anyone really noticed though.  I walked out of class again and went and got mom out of her class.  She had me sit in the gym while she went and got more band-aids to put over the five that I already had on.  We added four more band-aids and when it started bleeding through all nine, we knew it was time to leave and come home.  So mom, Jody and I came home while Crystal and dad stayed for the church service.  Our friends Judy and Jess brought them home after the service was over.  When we got home, mom redressed my leg and wrapped it with coban a self adhesive wrap.  I laid in my dads lazy boy with my foot elevated and on ice for over an hour.  Mom noticed my foot was turning purple and realized she had the coban wrapped to tight, but on the positive side no blood coming through.  She took it off to rewrap it and it started bleeding again.  She again put a new dressing on, rewraped with coban and we left it until I got in the shower last night at 11pm.  It started bleeding again.  This time dad decided to use his septic stick on it and it finally stopped the bleeding.  That was the answer.  This was a good lesson to learn, always keep coban and band-aids in your purse.  Especially when you have HPS and can't get the bleeding to stop. 

Yeah! We were able to attend the 14th Annual HPS conference at the Marriott hotel on Long Island, in Uniondale, New York.  We arrived at the hotel on Friday evening around six after a long travel day.  We were so excited to see our HPS friends.  This year there were several new families from Puerto Rico and at 7:00pm our first meeting was getting to know the HPS Network.  After the meeting the young adults met at Champions restaurant for dinner.  We had a wonderful time visiting and catching up with our friends.  Saturday morning was a continental breakfast and then we all met together for the welcome.  Crystal and I opened the meeting singing the HPS theme song "Colors of the Wind."  We are so proud to be able to sing this for the opening of the conference.  When we were 15 years old the two of us along with Donna's daughter Ashley opend the protocol for HPS.  During the week we were at NIH, we had an opportunity to sing "Colors of the Wind" for Dr.Gahl, our head research doctor, and a panel of other doctors.  In the second verse it says "but if you walk the footsteps of a stranger, you'll learn things you never knew you never knew." It is that phrase that has made this song so special to us.  If these doctors didn't walk in our footsteps, they wouldn't know our needs for HPS research. HPS is a strange disease and we are learning new things about it all the time.  After we sang the opening song.  We went around the circle sharing with everyone something good or bad that happened in 2006 and what we are looking forward to in 2007.  After getting to know each other the sessions began. That afternoon Kevin O'Brien CRNP, National Institutes of Health gave a presentation on HPS 101.  Mom and dad attended this session and thought it was very interesting.  They learned some different things about HPS that they didn't know about.  Saturday night was the big HPS dinner.  Crystal and I along with Ashley opened the dinner with a song called "At the beginning."  It was the song for this years conference theme Life is a Journey.  It was our first trio with Ashley and the three of us had a great time singing together.  Crystal and I also sang "When You Believe."  It's one of our favorites to sing because the message is so powerful.  I always get a little emotional singing that song.  It is so amazing to see all the miracles God has done in our lives.  He is so good!!  We had a wonderful time meeting some of the new HPS families and spending time with our old HPS friends.  On Sunday morning we started off with a continental breakfast.  Then sessions began, this day focused on all the doctors presentations.  Here are the names of Doctors who spoke. Dr. Susan Guttentag "Serfactant and HPS" Neonatology and Pediatrics.  Children's Hospital of Philadelphia.  Dr. Lisa Young Pulmonary Medicine, Children's Hospital Medical Center and University of Cincinnati College.   Dr. William Gahl Research Updates.  He is the clinical director National Human Genome Research Institute Head, Section on Human Biochemical Genetics, Medical Genetics Branch Head, Intramural Program, Office of Rare Diseases, National Institues of Health.  Dr. Thomas Markello Clinical Biochemical Genetics National Human Genome Research Institute, National Institutes of Health.  After a nice lunch we went back to sessions.  One of the most interesting presentations was by Dr. Micheal Yao fellow Gastroenterology National Institutes of Health, National Institute of Diabetes and digestive and kidney diseases.  He is starting a new GI protocol in the spring.  To learn more about the new GI protocol,  Click on New GI treatment protocol for  Hermansky-Pudlak Syndome to go to Heather Kirkwood's online journal. 

Heather is one of the HPS board members.   Next was the session ASK THE DOCTORS.  Dr. Samuel Seward Medical Director Health Services, Columbia University was on the panel of doctors with Dr. James Markowitz Pediatric Gastroenterology Schneider's Children's Hospital, Professor of Pediatrics New York University.  Dr. Melissa Merideth Fellow ObGyn National Human Genome Research Institute  This was our time to ask the doctors questions related to HPS.  After a long day of information Donna brought in Brenda Celmar Certified Respiratory Therapist, Certified laughter leader.  She had us do laughing exercises.  It was a blast and a great way to end the conference.  Everyone was laughing by the end of the session it was so much fun.  At the closing of the conference Crystal and I sang "Angels Among Us" which was quite emotional for all of us.  It's so hard saying goodbye to everyone when it feels like you just got there.  We are all so close.  We then finished the conference with a group picture.  In total there were 220 that attended this year.  It's amazing to see how it has grown over the nine years that we've been going.  Also, this year we were joined by a group filming from Stanford University for Biomedical Ethics.  They are putting together a documentary of how patient advocacy groups are changing medical research. They were interested in HPS and hearing our stories  Crystal and I had the honor of being interviewed.  It was exciting for us to be able to have a part in it.  It was a fun filled weekend with many wonderful memories.  We left NY early Monday morning and arrived back in Phoenix around 1pm.  It was a quick trip and a tiring flight.  We have spent the past couple of days recovering, unpacking and resting. 

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View more pictures under Photos (4) HPS Conference Feb 2007. 

It's been another rough week.  Just when we thought we were over the sickness I came down with a virus on Saturday morning.  I woke up after a restless night, tired, nauseated and with a horrible headache.  We made plans to drive up to Cottonwood, AZ to visit our sister Rhonda, niece Danielle and her husband Mike.  Our purpose for going was to have Rhonda tweeze our eyebrows.  She is our eye brow lady and she does such a beautiful job.  Rhonda, we know you read this blog, so thanks a lot!   We love you and appreciate all you've done for us.  We enjoyed our visit, and arrived home around seven.  I had a horrible headache all day and started chilling when we got home.  Mom took my temp and it was 102.6.  I went to bed early that night.  Candice and I stayed home from church on Sunday so we could get rest.  Candice felt tired and nauseated the whole day and later that night she started vomiting.  We think she caught the stomach flu dad had a week and half ago.  Monday morning we had a pulmonologist appointment, but she was just too tired and weak to go. We canceled her appointment.  So she stayed home in bed while mom and dad went with me to my appointment.  Dr. Radford told me that I had a virus.  Mom and I told her about Candice being sick.  She just got over the head/respiratory virus and now she is sick with a stomach bug.  We were concerned because she has lost more weight these past few weeks.  We were also concerned because our trip to NY is coming this Friday and we were afraid that Candice wouldn't be strong enough to go.  Dr. Radford said she needed to drink three boosts a day and eat.  She has managed to get one boost down a day and eat a little.  Today she is still tired and struggling with stomach pain.  I was thankful we were able to practice a little today.  We are all feeling better this afternoon and  praying everyone will be well by Friday.  Mom and I have had horrible sinus headaches.  Please pray for our health.  We are excited and already packed.  So New York here we come!!