Well, we've had a great summer so far!   Wyatt is doing great and having a lot of fun!  Summertime is good for us - no doctor visits which allows us all to have a little break.  I know my stress level is much lower when I am not waiting on test results.  Wyatt's stress level is much lower when he doesn't have to worry about being poked with needles.  We love all of his doctors but we don't miss them!  In fact, we are quite happy to not see them at all.

 

I have been reading a lot about new FA research.  We received Wyatt's diagnosis in August of 2007.  And I have to admit, when I began to educate myself about the disease, I was not very optimistic for Wyatt's future.  It is such a rare disease with such devasting complications that I just could not imagine that the research could move fast enough to make a difference in Wyatt's life.  The doctors explained to me that if he survived the bone marrow transplant, he might have a few years before he developed other complications.  The complications being cancers that we cannot treat with typical cancer treatments.  They explained to me that if we were lucky, he might not develop those cancers until he was a teenager.   As result of this knowledge, I always have a clock ticking in my brain.  And every July, I spend a lot of time thinking that he is getting one year closer to being a teenager.  And while I suspect that every parent has these types of thoughts, of wanting to freeze time; I struggle with the happiness of seeing him grow up and the anxiety of knowing that this growth is taking him just a little bit closer to his next challenge. 

 

Over the past year I have allowed myself to be a little more hopeful for Wyatt's future.  I have been humbled by the generosity of our friends and family.  And I have been reading about the new research that has been developing much faster than I thought possible.  This research has been funded by your generous donations.  The July Donor newsletter published by The Fanconi Anemia Research Fund reported on collaboration between the FA Research Fund and the National Institutes of Health.  The newsletter stated that, "Generous private donations to the Fund of $650,000 led to this monumental NIH grant of $10.7 million."  Your donations are working!  We are raising both dollars and awareness of this awful disease. 

 

So I am cautiously optimistic that we might actually see some medical advancements in time to make a difference for Wyatt.  And I am confident that our efforts to raise money and awareness can keep this momentum going.  The research renews my spirits and reminds me that every dollar counts.  The new research reminds me that our fundraising efforts are important, critical for Wyatt.

 

So, now is the time when I ask you to help us again this year.  Our team is training for the Sandman Triathlon - our annual Fanconi Anemia fundraiser.  We have a team of 8 racers so far.  And we have set some lofty fundraising goals this year.  I hope that if you are able, you will consider sponsoring our team of racers and help us raise money for a cure!

 

www.active.com/heywyatt2010

 

It has been an exciting spring for Wyatt!  Good times all around! 

 

On the medical side, his blood work in April came back normal.  This was a huge relief as his counts had been a little low in October.  The doctors were not concerned and felt that the low counts were a result of him fighting a virus; and would return to normal when he was well.  I, of course, did worry even though they told me not to.  Turns out, those doctors know a little something.  J 

 

Wyatt just finished up his second t-ball season.  And he has actually developed a few ball skills.  Unfortunately, his attention span is still non existent.  He spends most of his time in the out field finding ladybugs, spinning in circles, or (my favorite) trying out his Jedi Knight skills.   He actually tried using The Force to get someone out on second base.  We had a talk about how The Force is indeed a strong and valuable skill, so is actually catching the ball and throwing it to base.  But he is a great team player and is very encouraging and supportive of both his own team and the opposing team.  In one game, he actually ran the bases for the other team.  He was supposed to be playing in the outfield but I suppose he got caught up in the thrill and excitement of scoring runs?  He is a bit of a loose cannon out there.  Usually a fan favorite and always a coaching nightmare.

 

Wyatt recently met a Navy SEAL friend, Mr. Bill.  And when he found out that Wyatt is a big fan of the SEALs (he is often in the backyard "training" with his cousin), he invited Wyatt to a family day on the base.  Wyatt was THRILLED with this adventure!  He rode in a humvee, a zodiac boat and watched a Black Hawk helicopter drop some guys in the water during training...big stuff for a little guy.  Thanks Mr. Bill for making a few dreams come true!

 

Wyatt graduated from Kindergarten this week!!  I had such mixed emotions.  We are so happy to see him moving on to other things but sad to see him leave his preschool days behind.  He has made such good friends. And we've made some good friends there too.   At the ceremony, the teacher asked each child to talk about one memory they had of the past school year.  One little girl said that she will remember "Wyatt always being so funny."  And I thought to myself, all of my best memories of the past 5 1/2 years involve that very thing!  There is nothing more perfect to me than the sound of Wyatt's laugh.

 

We are looking forward to a fun and easy summer.  No doctor appointments on the books as of now.  Just lots of fun with family and friends!

 

Thanks for reading! 

Is it too late for a "happy new year!"?  Probably.  My intent is to write an update at least once a month but time gets away from me. 

Wyatt had a great Christmas as did Owen.  They are the perfect ages to really enjoy the spirit of the holidays.  There was lots of excitement in our house this year!  Unfortunately, Wyatt did not receive a Ring of Fire from Santa.  And it was noted.  We told him to keep the faith...there's always next year!

2009 was a good year for Wyatt.  Fewer doctor appointments and a lot more regular kid stuff.  It's a happy time for us.

I am always grateful for the generous donations made in honor of Wyatt every year.  But it's the at the end of the year when I am reviewing all the donations and fundraising that I feel truly overwhelmed by your kind and generous spirits.  In 2009, we raised over $20,000 for The Fanconi Anemia Research Fund.  And when I write "we", I mean every single person who has joined in this battle against FA.  The support has been with friendship, donations, emails, fund raisers and it's all so very important to us.  I have noticed in the past couple of FA family newsletters and also through talking with our doctors that there seems to be more of a feeling of optimism than just a few years ago when Wyatt was first diagnosed.   There is some promising research going on right now (funded by all the dollars you have donated) which gives us a feeling of hope.  The clock is ticking for Wyatt and we never forget that.  There is always that feeling of will it be enough?  Will it happen fast enough to save him from what we know will likely be in his future.  Our plan is to keep raising those dollars.  This is going to be a long journey for us.  And we thank you for keeping Wyatt in your thoughts and prayers.  And we thank you for your generous and thoughtful donations in honor of Wyatt.  He's a strong little guy but he needs all the support he can get!

Happy New Year! 

 

 

Happy Holidays!  I haven't posted in a long time - our lives took a turn towards busy!  Wyatt and Owen are extremely excited about Christmas.  And we are looking forward to a fun day with them.  Wyatt, true to form, is asking for a Ring of Fire this year.  I assumed that he meant some sort of toy but when I asked him to explain it, he replied, "you know, like the kind you drive a motorcycle through...."  Wyatt doesn't have a motorcycle.  In fact, he can't even ride his bike without training wheels yet. So not sure that a Ring of Fire would be purposeful here?  I think his request is so very Wyatt and  I know he will be looking for it tomorrow morning.  So, could be a sign that he is very creative and enjoys the circus.  Or, maybe we spoil him so much that we've limited his options for his list?  I am going to go with the creative/circus thing.  I think Steve might sway to the other direction.

Wyatt is doing well.  He's had a rough school year, lots of colds this year.  I think that Owen might be a contributing factor as he is now in preschool a few days a week.  But Wyatt is muscling through and it doesn't seem to slow him down much.   Even though it's December, I still have a hard time believing he is actually in kindergarten.   He is starting to read!!!!

We are so very thankful for another healthy Christmas with Wyatt.  And we send our best wishes for a healthy and happy holiday season to you and your families!  And as always, thanks for reading and thinking about our Wyatt.

We were able to focus all of our attention on Halloween fun this year as the results of Wyatt's bone marrow biopsy were normal!  Clear for another year!!  It was difficult to go back this year. It was very emotional for me and I was so very happy to hear the positive results.

We had a good but short trip back to MN.  We did our usual trip to the Como Zoo.  We are patiently waiting for the polar bears to come back (they are building a new habitat for them).  We got a very fun surprise at our hotel - an upgrade to a penthouse suite!  A very kind doctor called our hotel and told them about Wyatt and why were staying there.  Wyatt was so excited because he had actually been very curious about what was happening on the "PH" floor.  It was super fun to tell him that he could push that "PH" button on the elevator and see what it was all about. 

Wyatt is really enjoying kindergarten this year.  He truly looks and acts like such a healthy little guy.  It's so easy to forget that he has FA.  I think that's part of why I had such anxiety about his tests this year.  I just love being around him so much.  Just not ready to get back on that roller coaster again, not yet.  I need more time.  A lot more time.

I am trying to figure out how to post photos on the site.  I am hoping that I can get some up in the next few weeks.  I will also post the information from our triathlon fundraiser.  So check back again!

Thanks for reading!

 

 

We are leaving tomorrow for annual visit with Wyatt's doctors in Minnesota.  An anxious time as always but Wyatt is excited for the airplane ride.  I think this will be the last year that he will be excited for the trip.  I think from here on he will remember that this trip isn't actually all that much fun.  Wyatt's counts were a bit off last week for his clinic visit.  So say a little prayer for him if you can...hoping it's just caused by a virus and not a sign of something bigger.

So it's just two more weeks until the Sandman Triathlon.  Steve has been training hard all summer.  Everyone is excited to race and raise some money to fight FA!

Last year was our first time trying our hand at fundraising and we were incredibly successful.  We raised over $10,000!  We have a smaller team this year; however, we are keeping our hopes high that we can still meet our goal.  So, if you are in a position to help, we would love your support.  You can donate by clicking on "sponsor a participant" on this page. 

Thanks for reading and supporting us in our battle against Fanconi Anemia!

 

 

Wyatt is having a perfect summer!   The sort of summer that I dared to hope for not so long ago.  He had only one clinic appointment this entire summer.  So instead of doctors' offices, he spent his time swimming, bodyboarding, bike riding, and catching bugs...lots and lots of bugs.  He went to quite a few birthday parties in the past two months and had one of his own.  Wyatt is now five years old!  A lot of his sentences now begin with, "well, five year olds...." or "well, now that i am a five year old...."

Wyatt has finally decided to start riding his bike which as been a lot of fun for all of us!  He calls himself "King of the Road".   I am not sure if you can qualify to be King if you still have training wheels?  Wyatt has also become quite a swimmer.   He is now able to swim the length of the pool!  It's not pretty but he can do it.  And he is so, so proud of himself.  Swimming is one thing that his small size doesn't hold him back on - he can swim just as fast as the big guys.   Wyatt also did some fishing this summer when we stayed with his grandparents for a few weeks.  I think it was a little too slow paced for him, not enough action.  He told Steve that waiting for him to catch a fish was like waiting for The Great Pumpkin (our little Charlie Brown fan!).

Wyatt starts kindergarten in two weeks!  He is thrilled.  I am a little sad.  I don't know how many perfect summers we will get to have with Wyatt.  And I would like to keep this one just a little longer...

On the medical side of our lives, things are still going well.  We actually spent more time at the hospital with Owen (our dare devil) than Wyatt.  Wyatt did have few tests done in June and everything came back normal.  So far, so good.  We head back to Minnesota in October for Wyatt's two year post transplant appointment.   I am always extremely anxious about these visits but hopefully he will get the 'all clear' for another year.

Thanks for reading!

 

 

 

 

So the fundraiser in PA was great!  The weather was perfect.  There was a good turnout of people.  The farm was beautiful.  And Wyatt had a fabulous time - moon bounce, snake spotting in the pond, dog show, gym bus, snow cones, etc.  All the ingredients for a super fun day.

And, as always, Steve and I were humbled by the support from our family, friends and community.   Brad and Bonnie, the event organizers, are so very kind and generous.  They put so much time and energy into the fundraiser and we thank them from the bottom of our hearts.  I often worry that I do not express my gratitude enough.  It's difficult to find the right words to convey how much Steve and I appreciate the support we have received in the past two years. 

In the beginning of all this nonsense, I remember wondering if I had what it would take to get through everything...whatever the outcome might be.  And I remember hoping that I had created a life that was strong enough to endure the challenges that I was going to face.  Was my marriage strong enough?  Did I have the right people in my life?  Was I wise enough to make the decisions that would determine the outcome of my son's life?  Could I make Wyatt feel safe despite all of his pain and fear?   What I learned along the way was that I made some very good choices long before Wyatt was even born.  I picked the right partner.  I surrounded myself with amazing and caring people.  And when I wasn't brave enough; or smart enough; or strong enough - they filled in the blanks.  The people who have supported me for the past two years and beyond have always stepped in at just right time with just the right answers.   So while I have stumbled many times, I have always made it through.  I found a small poster in Minnesota that was so perfectly fitting to my situation - in the words of Christopher Robin, "Promise me you will always remember: you're braver than you believe, and stronger than you seem, and smarter than you think..."  And that is what so many of my friends and family reminded me - that I could get through this ordeal. 

Even though Wyatt is doing so well right now, the complications he will face from this disease are never far from my mind.  These fundraising efforts keep us positive.  They make us feel strong against an ugly opponent.  They give us the feeling of having some control.  And maybe most importantly, they make us feel like we haven't given up the fight.  I hope that we can always find hope.  And even if we don't win, I hope we will always feel that we fought a good fight, that we gave it everything we had.  I feel like the Rocky theme song should be playing as I type this...  :)

Thank you for reading!  And thank you for all of your kindness and support for our Wyatt!

 

 

BOU

DOWN ON THE FARM
BENEFIT ARTS & CRAFT SHOW

DATE: June 6, 2009 rain or shine

TIME: 9am - 3pm

PLACE: Haldeman/Pope Farm

Along RT 322, 5 miles east of the Hershey Medical Center is CAMPBELLTOWN. In the center of town, turn south onto LAWN RD. Travel approx. 7/10 mile to STONE LANE to the farm.

This show is benefiting kids! We are supporting our local                

RONALD MCDONALD HOUSE & THE FANCONI ANEMIA

RESEARCH FUND which is trying to find a cure for this rare

childhood genetic disorder. These well deserving organizations will be

accepting donations at the show.

A family from Virginia with a child who has Fanconi Anemia will be here for the show.  In honor of little Wyatt (whose mother is originally from the area and still has family in the area), we are having what we are calling: "WYATT'S CANINE TRIBUTE". Included is a DOGGIE DRESS UP (open to any age). So dress up your pet because we will have a photographer here to snap your picture with your stylish canine. Also, PET HEADQUARTERS (from Palmyra) is hosting a DOG SHOW at 1:00. The PET THERAPY GROUP will be here again and also returning are two Harrisburg policemen and their dogs for K-9 DOG DEMONSTRATIONS.

To help raise money, there is a PANCAKE BREAKFAST from 8-10am.   Also, we will be selling (Kauffmans) CHICKEN BAR-B-QUE 11am-3pm. Plus more food from Ketterings in Annville will be sold here.

There will also be an art show to benefit the two charities. The deadline for reserving a space at the show is June 1st.

The arts arena has taken a hard hit with the economy so everyone is encouraged to come out and support our local artists & crafts people. This show should prove to be fun for everyone of every age. So come join us and help us make dreams come true for deserving children who struggle with illnesses.

CONTACT PERSON:   Brad Martin bandatreasures@comcast.net (717) 599-4576