Angels In Voice

I know it's been a long time since we've last updated.  We're both doing well, staying busy and looking forward to the summer.  I really can't believe it's already here.

After the benefit concert we took a break from singing for a couple weeks.  We had the opportunity to spend some time with friends that we had not seen in a while.  We're both doing well health wise other than dealing with allergies off and on.  Candice's allergies were so bad that it affected her asthma and she had to go on Prednisone for five days.  A week later I had the same thing, but mine turned into a sinus infection.  I did five days on the Z-pak and that seemed to clear it up.  We're both taking Allertec and it really does help.

Our sister Rhonda came down from Cottonwood to surprise our parents for Mother's day weekend.  She had told Candice and I, but we didn't tell our parents because we wanted them to be surprised.  The four of us spent the Friday before Mothers day shopping for mom.  We bought her a top and capris.  Rhonda helped mom pick out a nice purse for the summer.  We had a great visit with her.  We were all sad when she left to go back home.  

Our voice teacher Karen is putting together a recital in June for her students. and so we are working on our solo repertoire for that. 

This past Sunday we sang at the Salvation Army Phoenix Citadel.  We sang there about seven years ago, and Major and Mrs. Lacey invited us to come minister in their morning worship service.  We sang five songs including "God Bless America Medley."  We gave a brief testimony and our mom gave a greeting and shared about the trials we have gone through with our health challenges.  It was our first booking since the HPS benefit concert and it truly was a blessing.  We're so thankful the Lord is using us to spread HIS word.

We have some home projects we're currently working on.  Our parents are doing some remodeling in the kitchen.  Our dad added new cabinets and we are having new counter tops installed.  It will be awesome to have a nice new touch to our kitchen.  

Candice and I decided a couple of weeks ago, that it would be nice to have our own rooms.  Candice is staying in our room, and I am moving into the guest room.  We moved all my stuff over to my new room last week.  Our mom has decorated the room in spring colors with a garden theme and butterfly's.  We're also going to be using fairies and humming birds.   Candice's room is already decorated in the victorian era with angels and cherubs.  Her colors are burgandy and gold.  It's definitely keeping us busy and we're both enjoying having our own space as well.  

Romans 5:2-8 CEV

²Christ has also introduced us to God's undeserved kindness on which we take our stand. So we are happy, as we look forward to sharing in the glory of God. ³But that's not all! We gladly suffer, because we know that suffering helps us to endure. ⁴And endurance builds character, which gives us a hope ⁵that will never disappoint us. All of this happens because God has given us the Holy Spirit, who fills our hearts with his love. ⁶Christ died for us at a time when we were helpless and sinful. ⁷No one is really willing to die for an honest person, though someone might be willing to die for a truly good person. ⁸But God showed how much he loved us by having Christ die for us, even though we were sinful

We had our 10th annual HPS benefit concert last Friday evening and it was awesome!!   We had a pretty good turnout, and our voices held up relatively well.  We enjoyed seeing friends that we haven't seen in a while.  Candice and I sang seven duets and three trios. We started the concert with a praise and worship song called "Life of Praise" followed by "Jeruselam."  We also sang "The Blood Will Never Lose its Power.  Our parents have a recording of us singing "Jesus Loves Me" when we were two years old.  We sound like chipmunks.   After our dad played the recording, Candice and I sang an arrangement of "Jesus Loves Me" by the Gaithers.  We also sang "Thank You Jesus" after our aunt Judy shared our story.  Candice and I sang "Fairest Lord Jesus" accapella, it is one of our favoirte hymns.  We ended the concert with "The Prayer" and that has become a tradition as the words are so beautiful.  We had several guests perform as well.  Our long time friend John Edmonds sang several songs including a beautiful Easter song with his daughter Melanie.  Our friends Chuck Kinslow, Paul Nunez, Judy West, and Sue Jordin, vocalists from our church sang also.  Chuck performed his solo beautifully.  Candice and I sang a trio with Paul titled "If Anybody Knows."  It's a black spiritual and with really nice harmony.   We sang "Blue Skies" with Judy West and a trio with Sue Jordin "When God Whipers."  It's a jazzy swing style with a 40s feel to it and tight harmony.   Sue's husband Rick played "Chariots of Fire" and "The King is Coming" during the slide presentation and offertory.  Everyone did so amazing! I really think this year was one of the best concerts we've had.  So far as of Monday we have raised $1,531.62.  It's not as much as we raised last year, but that is understandable with the way the economy is right now.   Thank you to those who came out to support us at the concert, we so appreciate your love and support.  We had a wonderful time and we look forward to doing it again next year. 

Click on image to enlarge

Our trip to NY was an enjoyable one.  It was so great seeing our HPS friends and meeting new faces.  We left last Thursday night at 10:30 and flew overnight.  We arrived in NY a little before 6AM Friday morning.  We flew JetBlue for the first time and really liked it.  Our flight was very smooth, though we didn't get a lot of sleep because it was noisy.  We arrived at the Marriott hotel by seven and our room was ready for us which worked out very nicely.  It snowed Friday morning and it was so beautiful.  Here in Phoenix we don't get that kind of weather, so it was really exciting to see the snow fall. The conference didn't start until Friday evening so we spent the morning resting.  We attended a couple of sessions that evening and had dinner with the HPS young adults.  We always enjoy our special time to visit with each other.  After a continental breakfast Saturday morning the sessions began.  Candice and I start each conference with our theme song "Colors of the Wind." We 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 in a circle and introduces themselves.  The past two years we have really grown and the circle has become even bigger.  It's enjoyable to see our old friends and meet the new families.   Candice and I belong to an HPS listserv and one of the highligts of the trip was to meet the new people who we've been corresponding with through the list.  We also met a family that adopted two girls from Hyderabad, India.  The older girl is twelve and has HPS.  It was really awesome getting to know both girls.  Saturday afternoon after lunch Candice and I attended Coping with HPS adult session moderated by Carmen Camacho.  She asked each of us to introduce ourselves and pick a color that best represents us.  I picked the color green, it's positive, uplifting, bright and it means go, go, go.  It's also my favorite color too.  Candice picked fluorescent pink because it's bright and it stands for survival.  She's been through so much with battling cancer as well as the HPS related issues.  I thought this was a great exercise, and made us really think.  Later that afternoon we went to a session about Women's Heath with Dr. Melissa Merideth.  Dr. Merideth is a GYN at the NIH.   She put together a slide presentation of a survey she took about women with HPS.  It was really interesting and very informative.   

Saturday evening was the big dinner.  This years theme was "Superheros."  Donna was very creative this year with it.  The theme was dedicated to all of the doctors at the NIH for all their hard work and dedication to us.  To our amazement Superman, Spiderman and Batman showed up haha!!! Be sure to check out the pictures under the photo section.  We had such a wonderful dinner and our visit with Kelly and Nicole was so much fun!  

Ashley, Donna's daughter, Candice and I sang "Hero" by Mariah Carey.   It's a beautiful song and it fit the theme perfectly.  Candice and I also sang "Wind Beneath My Wings" and dedicated it to Donna, the doctors at NIH, as well as  the volunteers who give their time to help us and the network.  We can't begin to imagine the number of hours spent trying to make this conference a success.  Both songs went well and we truly enjoyed the opportunity to sing once again.  

Sunday morning Candice and I were asked to join a panel with three other people for a session called "Lessons Learned."  We each discussed experiences we have had to deal with having HPS.  Candice and I shared a funny story that happened to us in high school.  We'll share this story in a futue post.  

Sunday focused on the doctor's presentations by Dr. William Gahl, Dr. Thomas Markello, Dr. Bernadette Gochuico, Dr Lisa Young, and Dr. Samuel Seward.  We also heard from Janet Perez and Dr. Keith Meyer about the success of Janet's lung transplant last year.  Janet's story was such an inspiration to all of us. 

At the closing of the conference, Donna asked us to sing "Colors of the Wind" as well as "Hero," while a picture presentaion was being showed.  We ended the conference with "When You Believe," which is a powerful song about believing in miracles.  It's amazing to see the miracles God has done in our lives.  The weekend flew by very quickly and we were sad to see it end.  We had a wonderful time and we look forward to seeing everyone at the conference next year.

We want to thank you so much for all your emails and your prayers.  Your support has been truly amazing.  Candice received a wonderful report from Dr. Mulligan.  Praise the Lord.  The spot on her left lung is gone.  Dr. Mulligan did say there was a new area of inflammation on the right lung though.  He feels it might be caused from all the respiratory infections she has had through out the past few months.  Her AFP tumor marker (the blood test that indicates if there is cancer in the body) was 6.1 which is right in the normal range.  Her weight is staying consistent so that is definitely a good thing.  It will be three years this coming November that she will be cancer free.  We're so ecstatic over this wonderful news.  Dr. Mulligan was thrilled, he was grinning from ear to ear.  Her next follow up will be at the end of the summer.  We feel God is working a miracle in her life.  We're just so thankful to have a doctor who truly cares and is so understanding.  

After Candice was done with her tests, we headed over to my appointment with Dr. Radford.  It worked out perfectly as her office is right near the Mayo Clinic.  My PFTs were down to 61% that day which is a quite a drop from what they usually are.  Dr. Radford was a bit concerned about it because mine are normally around 68-69%   She told me that my lungs still sound gunky and prescribed me another round of the Zpack.  I'm really hoping it will kick what's left of this infection out of my system.  We've been doing a lot of practicing for the benefit concert the past three days and I can tell that my voice is getting a little stronger each day.  We had voice lessons yesterday and Karen too agreed that my voice is stronger now than it was two weeks ago.  I felt really encouraged hearing that and I'm so thankful that I'm feeling and sounding better. 

We got to do some shopping at the mall last week.  That's always fun.  Monday, on the way home from the Mayo clinic we stopped in at one of our favorite stores Fashion Q.  Candice and I enjoy shopping, what girl doesn't. We have so many exciting things coming up.  Our trip to NY is in two weeks, I really can't believe it's already here.  It's been a rough winter for us health wise, we are praying that we'll stay healthy these next few months.  Thanks again for all your prayers for Candice.  Hearing this news has really made our week.  We serve an almighty God who answers prayers.

Isaiah 25:1 NIV

¹ "O LORD, you are my God;
       I will exalt you and praise your name,
       for in perfect faithfulness
       you have done marvelous things,
       things planned long ago."

Hermansky-Pudlak Syndrome Benefit Concert

We went from having cooler rainy weather to spring weather.  This week it's been so warm with temps in the mid 80's.  It's the end of February and we have all the fans going in the house and the air conditioner is about to come on any minute.  I am really not ready for the warm weather yet.  

Everyone here is doing well.  Candice and dad are feeling a lot better.  Dad lost nine pounds from being sick.  Mom, Jody and I were very fortunate and thankful that we didn't get it.  Candice goes for her three month follow up at Mayo clinic on Monday as well.  She is scheduled for lab work tomorrow morning.  She will have a CT scan and an MRI done Monday morning and has a follow up appointment with Dr. Mulligan that afternoon.  Please keep her in your prayers. 

I'm still dealing with the throat congestion from a sinus infection that I've had now for over two months.  I called Dr. Radford, our Pulmonologist, two weeks ago and she prescribed two rounds of Zithromax.  I finished taking it and haven't noticed much difference.  I scheduled an appointment with her for Monday morning after we're through with Candice's tests.  I really hope and pray we can get to the bottom of this, as it's still a struggle for me to sing.

These past two weeks we've been working on some new music for our upcoming HPS benefit concert which will be held Friday April 3rd at our church.  We enjoy working on new songs and playing around with different harmonies.  Candice and I are really excited about the upcoming concert.  We are also flying to NY for the HPS conference three weeks from now.  It will be so wonderful to see our friends again and meet some of the new HPSers who will be attending for the first time.  We look forward to attending the conference each year with our parents.

We also have been working on music for Good Friday and Easter.   It's all coming up so quickly.  I really can't believe we are saying goodbye to February, it just doesn't seem possible.  Please keep us in your prayers this coming week.  We're trusting God for a good clean report.  We will let you know how everything goes next week.  

Proverbs 3:5,6 NIV

⁵ Trust in the LORD with all your heart and lean not on your own understanding;  ⁶ in all your ways acknowledge  him, and he will make your paths straight.