Easter Fun

We celebrated a fun-filled, family celebration on Easter at our new house this year!  Our new home has the perfect back yard for kids to play and for spending time outdoors.  The weather was warm and sunny and we literally spent the entire day outside!






Our morning started when the girls discovered the Easter Bunny made a visit to our house!  My parents came to town for a week-long visit so the Easter Bunny had some extra helpers to fill the baskets this year.  The girls also received a generous package from my step-mom, Grandma Galyn, so the girls were pretty spoiled!  We also planted two single jelly beans the night before in hopes something would magically grow overnight.  Much to the girls’ delight, two lollipops sprung up in the place where they stuck the jelly beans!




Later that morning we hosted brunch and an egg hunt for the kids.  In total, we had 15 adults and 7 kids in attendance.  Fortunately, the weather allowed us to eat outside on our patio so we were able to accommodate the large group.  The rest of the day was spent playing cornhole, eating more, watching the kids put on several shows (costumes included), more snacks, and then ended with a grand feast of lamb, scalloped potatoes, asparagus, salad, rolls, cookies and homemade ice-cream.  Our family certainly knows how to celebrate a holiday!










I love creating brand new traditions and memories in our new home.  It was so nice to spend Easter this year with our entire immediate family.  We don’t often all get together at the same time since my parents and Ben’s oldest brother and his girlfriend live in Seattle.  Lucky for us my parents are moving to Boise as soon as their home sells.  We just need to work on Steve and LeeAnn now so we can have these types of celebrations more often!
















One Hundred Men Who Care

My brother-in-law, Scott, is a member of a Boise group called One Hundred Men Who Care.  It’s simple, this fine group of men care about our community and gather together quarterly to provide money to local charities.  Here’s the gist of how it works.

• Quarterly 1 1/2 hour meeting 
• Members submit their charity 
• Submitted charities all go into a hat 
• 5 names are selected
• The member that submitted each of the 5 selected charaties will have 5 minutes to share and/or lobby on the reasons that the charity should selected to receive the quarterly pooled funds! 
• After the 5 presentations, we will all vote on who should be the winner. Most votes wins. 
• Winner will deliver a ceremonial large check the next day to charity, along with a brochure describing 100 Men Who Care! 

Last week Scott was selected to present his charity.  His choice was Hearts for Hadley…of course!  Much to our delight and appreciation, Hearts for Hadley was selected as the recipient of $5,500.  Every penny of that will go to the Cystinosis Research Foundation to help fund exciting research that will benefit Hadley and everyone else living with cystinosis.  

Thank you Uncle Scott and the other caring fellas in our great city of Boise!!



Here’s a little video clip of the girls saying “thank you” to all the guys!



Natalie’s Wish Celebration Video

In my previous post, I included a link to CRF’s video they shared at the Natalie’s Wish Celebration last weekend.  It was a little buried within my long-winded post so I wanted to dedicate a post to share the video again.  It’s a great peek inside the life of cystinosis and touches briefly on current research.  I’m particularly fond of it because our family is featured!

We had the privilege of spending a day and a half with Lars and Nils who flew to Boise to film our family.  They visited last September when we were still relatively new to Boise.  The home featured in the video is the cute, little rental house we lived in for four months.  

The girls fondly called Lars and Nils the “movie guys” and instantly loved them!  Both guys (father & son) really took the time to get to know our family and fast became two of our favorite people in our little cystinosis family.  One of my favorite memories was watching Lars sit at the dining room table coloring with the girls.  

I think they did a great job of capturing some of our daily life.  I really love seeing Natalie Stack at the beginning and end of the video.  She is a very special young woman and our family adores her.  In fact, she is the reason the CRF exists.  I hope you enjoy the video as much as we do!


Day of Hope!

I decided to finally dust off the old keyboard and share with you the amazing weekend we just enjoyed.

Ben, Stella, Hadley and I traveled to Newport Beach, California for our third Cystinosis Research Foundation Day of Hope family conference.  We first attended in 2011, a mere two weeks after Hadley’s diagnosis.  Last year we attended with both sets of parents and Ben’s brother Scott, and his girlfriend, Amber.

It seems each year continues to get better and better!  There were around 40 families in attendance this year and a TON of kids.  It was awesome!  Many were families with newly diagnosed kids or who had never attended a conference before.  While I wish no new children were diagnosed, it’s always nice to meet the families.  And of course we love seeing the familiar faces we’ve met at the previous conferences and keep in touch with throughout the year.  Our community is small but the support is larger than life!

We arrived Thursday afternoon and spent the evening enjoying a Mexican fiesta while letting the kids interact and forge new friendships.  The welcome dinner is always a great way to break the ice and ease into the emotionally charged weekend.






Friday morning we enjoyed breakfast outside before getting the kids settled into the fantastic childcare provided by the CRF.  I can’t say enough good things about Destination Sitters.  I never worry about the girls because I know they are having such an amazing time!  It helps that they run off to play with their friends without even needing to say goodbye to me and Ben.



Day of Hope Family Tree


The conference was kicked off by each family introducing themselves and sharing their hopes, dreams and wishes surrounding cystinosis.  This year we presented our thoughts on colorful flowers that were then placed on a “family” tree along with a picture of each child affected by cystinosis.  When I asked Hadley what her wish is for herself, she replied, “a princess”.  Of course!  Stella wished love for Hadley.  She is such a wonderful big sister and so supportive of Hadley!  They are so innocent and unaware of what cystinosis really is and for that I am thankful.  When I asked Hadley if she knows why she takes medicine and what her disease is called she proudly said, “cystinosis conference”.  Her only association with cystinosis is the conference and I couldn’t help but laugh.  I don’t think she even realizes she’s sick.

The sessions with the doctors and researchers began after the family introductions. All of them were exciting and inspiring!  For an orphan disease affecting only 2,000 world-wide, so much progress is being made.  Treatments are improving which in turn means the quality of life is also improving for all of those living with cystinosis.  Most exciting was the announcement that Ghanashyam Acharya from Baylor School of Medicine has engineered a transdermal patch (similar to a nicotine patch) that would slowly release cysteamine throughout the body ridding the cells of the build-up of cystine crystals.  This method of delivering medication would take away the need for both Cystagon and Procysbi.  This would provide a huge improvement in the quality of life for those who take the pill form.  There would be far fewer side effects and no smell.  It will also help with compliance since the patch will only need to be changed three times a week.  Ghanashyam was recently married and his lovely new wife also attended the conference.  She spoke the last day and said that after attending the conference and meeting all the families, she will never give her husband a hard time for going to the lab to work at 2 am.  Her sweet comments were received with laughter and a round of applause.

Ghanashyam is also collaborating with Dr. Jennifer Simpson on an improved delivery system for corneal cystinosis.  Currently, the only treatment available are eye drops that must be administered every waking hour for best compliance.  We haven’t started treating Hadley’s eyes yet because she is not tolerant of eye drops.  The new system is called a nanowafer and is similar to a contact lens.  The nanowafer would slowly release the drug throughout a week and would be such a life saver!   Even more amazing is that a clinical trial is scheduled to occur within a year.

We also heard updates from Dr. Stephanie Cherqui regarding the progress made toward stem cell and gene therapy.  Dr. Cherqui stated we are likely only 2-3 years out on a clinical trial for an autologous stem cell transplant.  This means cells from the person affected with cystinosis would be removed from the body, genetically modified and then re-introduced back into the body.  Bottom line…this would be the cure for cystinosis!!

We spent that evening celebrating with an Italian feast on the beach.  Everyone was flying high from such an awesome first day!  The kids were no exception.  While we were in our sessions, the kids were being entertained by a lady who dazzled them with a bubble show, arts & crafts and most importantly, a visit from Cinderella and Spiderman!  I had to sneak in and give Hadley meds and it just so happened to be when Cinderella was there.  All the girls were gathered around her on the floor quietly waiting for their turn to get make-up applied by the princess herself.  It was pretty dang cute even though Cinderella’s taste in make-up looked straight from the 80’s!  Some were still sporting their glittery faces that night at dinner.  My girls loved playing on the beach and even braved the cold water by wading in it a bit.  They had so much fun playing with all the other kids, especially when it came time for the cotton candy booth to open.  The cotton candy was served on sticks that lit up with different colors.  You can only imagine the number of magic wands and swords that were being swung around on the beach that night!








After a great night of sleep, we were up and ready to go again on Saturday.  We heard from other a few other doctors and the discussion I found most interesting was from Dr. Paul Grimm regarding kidney transplants.  Dr. Grimm is a wealth of knowledge and has a fantastic sense of humor!  While I hope today’s generation of kids with cystinosis can avoid a kidney transplant, it helps learning more about the process.

We also heard from a panel of teenagers and adults living with cystinosis.  Because of improved treatments, individuals are living longer and longer with cystinosis.  There are people living well into their 30’s, 40’s and beyond!  In fact, we celebrated the 50th birthday of Mack Maxwell while we were at the conference!  I always enjoy listening about cystinosis from the perspective of those who actually have the disease and are at an age where they can articulate what it’s really like.  We are given the opportunity to ask questions and they are open and honest in their responses.  I’m in awe of them all and love hearing about their adventures in life and how many have gone on to college, graduate school and onto exciting new careers.  I want those things for both of my daughter, cystinosis aside!

After the panel finished we wrapped up the day by sharing the most difficult time we’ve experienced with cystinosis and then shared our silver lining.  I was moved to tears several times and it made me realize how fortunate we are to be connected with such a phenomenal group of people.  I can’t imagine riding out this journey by ourselves.  It really helps to have others with you along the way.  Even though we may all be at different stages on the journey, one thing remains the same…we love our kids more than anything in the world and we want them rid of this terrible disease!

When the session ended, one of my cystinosis mama friends presented Nancy Stack (CRF founder and our fearless leader) with a beautiful hand-made quilt which replicated the logo for the conference this year (the family tree).  Each family provided Erin with scraps of fabric to be used to create the beautiful blooms on the tree.  Thankfully my mom is a fabric hoarder and provided Erin with fabric for our family.  Nancy was very touched and it will be a nice reminder of how much we love her and how thankful we are the CRF exists!  Without her and her family none of this would be possible.





We spent the balance of the afternoon poolside with the girls and many of the families.  For some reason I only packed a swimsuit for Hadley.  Oops!  So I did what any decent parent would do in the same situation; I let Stella swim in her skivvies!  She kept telling everyone that her mom forgot her suit so she had to swim in her underwear.  Yup…mom fail!  I promised her I’d never forget it again.  She didn’t seem to mind too badly and both girls enjoyed spending time in the pool with their friends.

After a couple of hours we headed back to the room to get ready for the Natalie’s Wish Celebration.  It’s one of the most special nights of our year!  It’s fun to get dressed up with Ben and go to a  fancy dinner that is based around raising money and awareness for cystinosis.  This year there were over 450 people in attendance!  The theme was Night of a Thousand Stars and everything was flawless.  We sat at a table with other cystinosis families and adults with cystinosis.  We enjoyed a delicious three course meal and were entertained by the Tenors, a group of hot guys singers from Canada.  The evening included a video about cystinosis and featured our family.  It was an honor being included alongside other families and doctors.   The entire night was memorable and an incredible 2.2 million dollars was raised for cystinosis research.  In the past 11 years, the CRF has raised over 25 million dollars of which every penny will go to research.











It’s always hard to say goodbye to everyone after such an uplifting weekend.  I’m already excited again for next year!  We have started planning our own Hearts for Hadley fundraising event that will happen in September.   I’m more determined now  than ever to help do our part to raise money for the cure.


I’m Back!!

It’s been a looooong time since I’ve written a post.  It’s been 3 months since we moved to Boise and things are  finally settling down a bit.  So much has happened that I feel like I could write for days.  Course, I don’t have days and I’m not sure where to begin so I will try to condense.

We arrived to Boise in early July and spent our first three weeks living with Ben’s brother, Mike, and his family.  At the beginning of August we moved into a fully furnished rental house located on the bench.  It’s the perfect temporary set-up for our family and we love our landlord.  Not owning a home or having my stuff (it’s all in storage) is outside of my comfort zone, but I’m trying to embrace this brief period of time in our lives.   We plan on buying a home in the spring so we have plenty of time to decide what area of Boise we want to plant ourselves.

The bonus about the house we’re renting is that it’s a mere three minutes from my new work.  I was fortunate to land a great job with an awesome company shortly after moving here.   I was hired on as the packaging specialist for Happy Family Brands, a premium organic food and snack company for babies and kids.  I was thrilled to stumble across this opportunity since it melds my packaging experience with my passion for kids.  I was already a huge fan of the products as were Stella & Hadley.  They love mommy’s new “snack work”!

Ben is currently looking for full-time work and in the meantime has been working for a buddy who owns a fencing company.  We’re hopeful a great opportunity presents itself to him soon!

The girls started a new school in August and currently go three days a week and are with Ben on Thursdays and Fridays.  The girls will go full-time once Ben finds a permanent gig.   Their school is a minute from our house and they seem to love it so far.  I still desperately miss the girls’ school in Seattle, but they are happy continue to learn and grow at their new school.

We’re lucky to have moved to a place that already had built-in family and friends!  It’s made for a much easier transition for me.  My heart aches for the people we left behind, but I’m still happy be made the decision to move here.  Ben and I are heading back to Seattle for a long weekend in November and I’m so excited to see everyone!  It will be the first trip we’ve even taken without at least one kid with us.

Speaking of kids, the girls are doing amazingly well.  They absolutely love their new city and are thrilled to spend lots of time with their cousins, Kathryn & Porter.  The four of them get along incredibly well and can entertain themselves rather nicely.  Makes it nice for the adults to spend time together without having to constantly entertain munchkins!

We celebrated the girls’ 3rd and 4th birthdays in September with a Tinkerbell party in the park.  I’ll write a separate post for their birthdays.  Since my blog acts as a “baby book” of sorts, I’ll kick myself if I don’t document their special day!

Hadley is the healthiest she’s ever been and has a fantastic team of doctors at St. Luke’s hospital.  Two of her specialists (kidney doc & metabolic doc) come in from Portland and both are well versed on Cystinosis.  In fact, her new metabolic doc was able to get Hadley approved for the newly approved drug, Procysbi.  This drug replaced her Cystagon and now she’s only required to take it twice a day instead of 4 times.  She is tolerating it very well and we love the new spacing between her meds.   We were able to increase the doses of all her other meds so she’s only required to those every 8 hours now.

There is so much more to share but I figure I can space it out over time.  I’m committed to regular updates again!  I figure this is another good way for us to keep our friends and family in Seattle up to date on our new life in Boise.

Change is Good

Change is good!  This is the mantra I’ve been repeating in my head when I start to panic or get cold feet.  Why you ask?  Well, it’s because my family is making the big move to Boise, Idaho!

Ben and I have talked about moving closer to his family for a couple of years now.  Just talking, not acting!  I honestly didn’t think we’d go through with this type of change for a couple more years.  First it was the crash of the housing market.  Then we received Hadley’s Cystinosis diagnosis.  That first year required a lot of medical appointments and it took time to get her stable and doing well.  Now the housing market has somewhat improved and so has Haddie!

We decided to dive head first into making this all happen the night before we left for vacation to California last month.  We met with our Realtor and looked at what we could get for the house and decided then and there we would put the house on the market after we returned home the following week.  In fact, we arrived home Wednesday night and had the house staged and ready for the photographer the following Monday.  In that short weekend we fixed a few things around the house, Ben painted our bedroom and I packed up a ton of our stuff and staged the house.  We tend to work well under pressure and thankfully we pulled it off!

We received an offer on the house over the weekend.  This morning we heard back from our Realtor that our counter offer was accepted and we are moving ahead with the sale of our house.  Holy crap!

After we found out our counter offer was accepted, we immediately told work.  We wanted to wait until we had a secured offer before announcing to the world.  Ben and I both became a bit emotional when we told our boss about our plans to leave Seattle.  Ben has been with our company for 12 years and I’m a month shy of 9 years.  It’s where we first met, where we’ve gained lifelong friends and has provided us with a solid foundation for many years.

Now we have to get down to business!  We need to secure a place to live temporarily, find jobs and pack all our crap.  Yeah, we made this HUGE decision prior to finding a home or jobs.  I’m confident everything will fall into place, but I’m still a little…or maybe a lot freaked out!  It’s no secret I’m a big time planner and like things to be organized and figured out before I dive in.   This move couldn’t be more outside my comfort zone.  But…I know it’s absolutely the right choice for our family and that’s how I’m able to set aside my normal control freak-ness (I made that up)and just go for it.

There are so many reasons we are looking forward to our move.  Obviously family is the main reason.  We want to spend our lives with Ben’s brothers and their families.  It’s very important to me for the girls to grow up with their cousins.  They are all close in age and love spending time together.  Now they will have the opportunity to see each other all the time!   Another very compelling reason is the climate.  Boise’s weather is much more appealing to us than rainy Seattle.  We are looking forward to four distinct seasons and a true summer filled with sunshine and outdoor fun!  We’re also ready for a change of pace and cost of living.

While all our reasons to move make sense and are exciting, I can’t help but feel my heart breaking a little bit.  We leave behind an amazing network of friends and family.  I wish I could bundle everyone up and bring them with me on our new adventure.  What am I going to do without my mom?  She and Brian are a huge part of our lives and I’m so sad to leave them behind.  The good news is that we’re forcing them to move to Boise in a year (hopefully).  I think it will only take my mom a month of being away from the girls before she’s ready to pack up and head our way.  I just can’t picture my life without her or Brian being there with us.  I want my girls to grow up with BOTH sets of her grandparents in the same place.   In addition to my parents, we have a large extended family whom we adore and loving and supportive friends that I will miss terribly!  We expect lots of visitors once we get settled.

So there you have it!  We are embarking on a new phase in our lives and are excited and scared at the same time.  The next month is going to fly by in the blink of an eye.  We have so much to get done that I’m a little overwhelmed right now.  I know we’ll pull it off and the stress and pain is only temporary.

I’m excited to see what’s in store for us next.  Boise…here we come!  Hope you’re ready for us!



Bye, Bye Beano

We lost our beloved dog, Beans, two weeks ago.  I haven’t written about it until now because it’s not a fun topic to discuss and we’ve been grieving our loss.

We arrived home after work on a rare, sunny Seattle afternoon.  The girls were outside playing in the kiddie pool with my mom.  My mom left and I stayed outside to play with the girls while Ben got in the van to go buy a new battery for our car.  Beans was laying on the driveway and didn’t hear when Ben started the van.  I looked up and saw him laying there and start screaming for Ben to stop.  Sadly, it was too late and Ben accidentally backed over him.  I stood up and started waiving my arms and he finally heard me and realized what happened.  Beans was yelping and Ben ran out of van to tend to him.  I handed him Stella’s beach towel and he scooped Beans up and raced him to the vet.

Stella saw the whole thing happen too and started screaming and crying when Ben drove off.  I scooped her up in my arms and we both cried together, squeezing each other tight.  Hadley didn’t see what happened and was pretty oblivious to what was going on and didn’t understand why we were upset.  As much as I wanted to believe otherwise, I knew we wouldn’t be seeing our Beano again.

I waited nervously for Ben to call me with an update.  I jumped when the phone rang and prepared myself for the news.  There was pretty severe damage, but all of his internal organs were in tact.  The vet thought he may be able to save Beans, but it would cost over $3,000 and there was no guarantee.  My heart broke for Ben as I told him it was time for us to say goodbye.  He had already come to the same conclusion but I think he needed to hear it from me.  Beans was 12-1/2 years old and lived a great life!  He was already struggling with every day tasks and I don’t think his poor, little body could have withstood the surgery or recovery that would have been necessary.  Not to mention that we don’t have that kind of money to spend on vet bills.  We’re still dealing with medical bills for Hadley and when I was in the hospital.  Regardless, it was a terribly difficult decision to make.

Poor Ben has been filled with so much guilt over what happened.  The bottom line is that it was just a terrible accident!  I wish I could take away Ben’s pain.  Time is helping improve our family’s morale and sense of loss.  We still talk about Beans regularly and the girls understand that he died.  We talk about how Beans is with Grandpa Ron (my dad), Toby (our old kitty) and Simon (my college cat).  That seems to make them feel better about Beans being gone.  I also bought a lovely book that someone recommended for kids called, Lifetimes: The Beautiful Way to Explain Death to Children.  The photos are great and it has helped the girls understand that every living thing has a beginning and an end.

Beans was a great dog who loved unconditionally and with gusto!  He licked more than any dog I’ve ever met.  He wasn’t exactly bright but he made up for his lack of smarts with his sweetness.  We miss him!


Picture Post

CRF - Check presentation

Check presentation at the Natalie’s Wish fundraiser.

Duck lips

Quack, quack!

Fun Center


Family Fun Center with the girls


Haddie - I did it!

This one loves Mac & Cheese!

Haddie and mama at park


Play date at the park!

Haddie plays at the mall

Mall play area before we went to see The Croods

Haddie slides

Haddie loves to go down the slide

Haddie swings at park

“I go swingy!”

Haddie wins

Sister sword fight

Mer and Marcu

Mer & Me on a fun Sunday afternoon

Mother's Day 3 Generations

Mother’s Day with my mom and the girls

Sisters and cones

Daddy treated his girls to Dairy Queen.

Stella called it the Queen’s restaurant.

Stella & Vivi

Stella & her buddy Vivian

Stella @ the movies

Stella watching The Croods

Stella at mall

She’s pretty cool!

Stella at park

In jail at the park

Vivi & Haddie

Vivi & Haddie

Sword Fight

Haddie won the sword fight!

Stella slides

My goofy girl!

Stella swings

She asks to be pushed as high as possible.

Stella phone

Making some important calls.