Angels In Voice

We apologize its been so long since we last posted.  Things have been very busy here.  We were gone a lot last week and when we were home we would practice or exercise, which didn't leave a whole lot of time for other things.  I did go for my CT scan a week ago Monday at the Mayo clinic.  It ended up being a longer day than we intended.   I had an allergic reaction to the Iodine contrast.  I always have to prep with prednisone and benedryl several hours prior to the test, but this time it didn't seem to hold me.  I'm always a bit nervous when they put the contrast through not knowing how my body will react to it.  My lungs started tightening immediately after the contrast was given.  I also broke out with a few hives on my neck as well.  I describe the symptoms I was having to the tech and he had a nurse in the room within seconds.  She had me take four puffs of Albuterol to open my lungs, but it made me feel so jittery and elevated my blood pressure.  The Albuteral made my lungs feel much better but left me feeling like I was running a marathon.  My heart rate shot to 137, which is extremely high.   I use Albuterol on a regular basis and it always makes me feel jittery and anxious.  I normally only take two puffs though.  So when the nurse gave me four, I knew that was a bit much.  I was taken to the nurse's observation room to be watched carefully.  I was given a bag of fluids interveiniously to help flush my system.  Mom and Crystal sat with me for the two hours it took to get my heart rate down to 130.  Since Dr. Mulligan was out of town that day, I already knew I wouldn't be seeing him.  The nurse decided to set up an afternoon appointment for another doctor to see me to make sure my heart rate and blood pressure was acceptable before going home.  They had a nurse with me, and as we sat  in the waiting room for my appointment, she asked if I felt two leiters of oxygen might help.  After seeing the doctor my heart rate and blood pressure were down.  I told him I was feeling alright and he told me if I started feeling bad, to go the ER.  It was most definetly a tiring day for sure, but by Monday night I was feeling a lot better.  I spoke with Dr. Mulligan on the phone last Thursday afternoon.  He said my CT scan looked good, and my tumor marker (Alpha Fetoprotien tumor marker) was 7.2 which is in the normal range.  So that was encouraging.  He did say he saw some increased patchiness on my liver, he wasn't for sure what it could be.  He said that he didn't see any new tumors, which is always a relief to hear.  He suggested I follow up with him in mid July.  He also said since I had a reaction to the contrast this time, that I'd have to start having MRI's done from now on.  I am glad it is over with for now and that I don't have to think about it for another three months.  Dad went for his bladder scope on Monday and he received a good report too.  Thank the Lord for the wonderful news he has given us.  Thanks to all of you who continue to hold our family in prayer.  We can't thank you enough!!  

Our family drove to Cottonwood to meet our new little addition to the family.  Our niece Danielle and her husband are celebrating the birth of their first baby, Austin Michael Lyons.  He was born Monday April 14th at 4:15pm.  He was a 8 pounds and 19 inches long.  We had such an enjoyable visit.  Our parents are officially GREAT GRANDPARENTS and Crystal and I are excited to be GREAT AUNTS!!  What an adorable baby!  We all took turns holding him and admiring him.  What a blessing it is to see God's beautiful creation!  Danielle & Mike Congratulations!!  We can't wait to see how big he'll be when we see you in four weeks.  

Crystal and I have been pretty busy the past two weeks.  We are enjoying our new CD, we listen to it and are touched by the message in each song.  We thank the Lord for allowing us the opportunity to record the third CD.  We have received many wonderful comments and it brings us joy knowing the songs are ministering to people.  We are also preparing for our 9th Annual Hermanksy-Pudlak Syndrome benefit Concert on May 16th at our church.  Please come out and support us this year.  Our goal is to spread awareness and raise a good amount for the HPS Network.  Since the conference, there have been three new people diagnosed with HPS.  The sad thing is that there are many others out there being mis diagnosed because their doctors don't know anything about this rare disease.  

Please be in prayer for me on Monday.  I go to the Mayo Clinic on Monday for my follow up CT-scan.  I have been feeling GREAT so I am praying my results will be good.  Dad goes for his bladder scope on the 28th.  So a week from Monday, please keep him in prayer as well.  We are all doing well and we are so thankful to God for keeping us going day by day.  Click on image to enlarge.

We flew out last Friday morning for the 15th annual Hermansky-Pudlak Syndrome Conference this past weekend.   The conference is held at the Marriott Hotel on Long Island in Uniondale, New York.  Our flight arrived in NY around 4:30 in the afternoon.  We were so happy to finally be there after a long day of traveling.  We didn't arrive at the Hotel until after seven.  We were so excited to see all our HPS friends and we met several new HPS families this year.  The young adults again had dinner at the Champions restaurant that evening.  We enjoyed our special time of visiting together.  After a continental breakfast on Saturday morning, the meetings opened with us singing the HPS theme song "Colors of the Wind."  Candice and I feel honored to start off the meetings with this special song.  When we were 15 years old the two of us along with Donna's daughter Ashley opened 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.  On Saturday morning we allow a couple of hours for the Family Album.  Everyone gathers around in a circle and introduces themselves.  It seems like this year there were so many of us that we couldn't all fit into the circle.  Each person shared something significant from last year and a goal that we would like to accomplish this year.  It gives us the opportunity to get to know one another.  We attended the Adults with HPS discussion group, moderated by Carmen Comacho.  She had a little assignment for us.  We were each to introduce ourselves and find an item that was special to us.  It could be something in our purse, something we were wearing ect.  When it was our turn, Candice talked about the cross necklace she was given by a special lady back in 2005 when she was first diagnosed with cancer.  She explained that she wears it often and it always reminds us that we need to put our hope and trust in God through the trials that we face daily.  It helps us to remember that he's always there to give us the strength that we need.  It was nice to hear what everyone had to say.  I agree with a few people who said their cell phone was special to them because it allowed them the opportunity to stay in touch with friends and loved ones.  We also talked a little bit about how to cope with HPS and it was interesting to see how each person faces the difficulties that come with having a rare syndrome.

After lunch we attended the low vision session with Dr. Natalio Izquerdo Encarnacion.  Dr. Izquerdo is an ophthamologist in Puerto Rico and has patients with HPS.  His session talked mainly about how albinism and HPS affect the eyes.  They had some new sessions this year.  Dad won a massage and gave it to Candice and I to split.  It was really nice.  We also enjoyed a 30 minute yoga class.  It really helped us to relax and center ourselves.  Saturday night was the big dinner.  The theme this year was taking chances.  Ashley sang the theme song "Take a Chance on Me by Abba."   Candice and I sang "We Take the Chance" the song originally talks about winning a game, but we changed the words to make it more HPS related.   We also sang "When You Believe."  Donna requests Candice and I to sing this song each year at the dinner.  It's a powerful song with great meaning.  It's amazing to see the miracles God has done in our lives.  We are so thankful.  It was wonderful seeing all the doctors from the NIH.  They are all approachable, kind and friendly.  We had the honor of meeting Dr. James White.  Dr. White is a Regents Professor at the University of Minnesota.  He is the doctor who diagnoses patients with HPS by reviewing blood platelets under his electron microscope.  He was so sweet, humble and as down to earth as could be.  He reminded us of a loving grandpa.  He told Candice and I that it was nice to be able to put faces to all the blood samples that he has diagnosed.  On Sunday morning we had the continental breakfast and then sessions began.  This day focused on the doctor's presentations.  Here are the doctor's that spoke.  Dr. James White "The History of Platelets," Dr. Bernadette Gochuico "Lung Lavage,"  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.  There is still no cure for this syndrome.  We learned there are 874 diagnosed cases of HPS in the world.  There are 8 sub types of HPS, Pulmonary fibrosis and inflammatory bowel disease are most like to occur in types one and four.  The other types are not as severe.  Dr. Thomas Markello Clinical Biochemical Genetics National Human Genome Research Institute, National Institutes of Health.  After a wonderful lunch,  Dr. Susan Guttentag "Surfactant and HPS," and Dr. Lisa Young "Pulmonary Medicine." gave their presentations.  I found Dr.Young's very interesting. 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.  And Dr. Maria Padilla, Pulmonology/Medical Director Lung Transplant Program ILD/ Advanced Lung Disease.  This was our time to ask the doctors questions related to HPS.  After a long day of information Donna brought in for a second year Brenda Celmer Certified Respiratory Therapist and Certified laughter leader.  She had us do laughing exercises, and we all couldn't stop laughing. It's definitely a wonderful way to end the conference.  We have a doctor friend that lives in NY, we met him while he was visiting here a few months ago at some Indian friends,  Celeste and Dr. Janes home.  Dr. Ed is a cousin of Celeste's.  He teaches Internal medicine at a University in NY and has never heard of HPS.  He drove up for the afternoon session.  We were so thrilled that he was able to come.  Then it was time to say our goodbyes.  Candice and I ended the conference with "The Prayer."  It's always hard saying goodbye to everyone because we are all so close.

It was a long six hour flight home, we were all so exhausted.  We were so thankful to be back in Arizona.  I really wish NY wasn't so far away.  Right when we arrived in NY, dad got a call saying our CD's were ready to be picked up.  So on the way home from the airport we stopped in to pick them up.  We're so excited about the new CD, and we are very pleased with the overall project.  We added some pictures of the conference under the photo section above.  Scroll down and click on HPS conference 2008.  Thank you all so much for your prayers for traveling safety.