2011 Royal Histio Heroes Bike-a-walk-a-thon

I have been wanting to put this post up since Saturday---but I have resisted to fulfill other responsibilities until today.  Now blogger is resisting!  It is loading my pictures at the rate of one per decade, so I hope someone will be willing to step in and carry on when I am too old to keep loading these pictures up.  My new and improved plan includes putting up a few pics at a time and over the next few days the whole story should appear!!  It was an amazing event--amazingly, amazing.  Over 260 participants and hundreds of others to observe and join in.  We are overjoyed at the results---$25,000.00 to send to Histio Heroes research fund!  Can you believe what this tiny little town in Eastern Washington can do?!!  I want to thank everyone---sponsors, participants, volunteers, attendees, family, friends, and even the Head coach and star player from Connell who came and took their turn in the dunk tank.  Just how I'm supposed to not hug those two when I see them again I don't know.....maybe if I wear all my Knight gear the magnetic poles in the earth's crust will keep us naturally apart!  Debra Bergeson sent me 268 pictures, Maria Allred sent me dozens, Melanie has posted some on face book (but you all know I won't be able to figure out how to make those march onto my blog!---wanna come visit Mel I have a job for you!!!) and Jessica Greenfield said she took over 500 pictures that day.  We don't mess around with our good memories around here!  So without too much further ado here are your pics, oh one more ado---I love you ALL!  Thanks for helping us in our mission to save our son, and his quality of life for many, many, many, many years to come. 

                                          The registration line---complete with patient people.

                                                                 Pretty cool volunteers

 Marcus is saying "Look, Dallas, look, at the good people of Royal".  Dallas is dutifully looking.  I have very dutiful brother-in-laws.

Corbin at the bike-repair station (I'm guessing for a bike-repair, not just for kicks) that Dad and John Klefbeck ran--they fixed over 40 bikes that day.  Including Sierra's, twice I think.

Lindsey Christensen offered to run a bake sale--we took her up on that offer!

 Why is Mother not manning her first aid station?  Someone get on the radio and find out who gave her permission to abandon her station---sheesh.  I might be overreacting, I'm guessing now from the background that the event might be over, or not started--bikes are going in the wrong direction.  I'll look into this before I press charges of abandoning her post.

Jackson's job was to go around, help where he could, cheer people on, and be friendly, talkative and worth his weight in gold.  Tanner's job was to make Jackson do his job.  Tanner had a hard job!!  Do you think they called each other and said, "hey wear your plaid shorts and flip flops and I'll wear mine"?  Will they tell us if they did?

Royal football players manning the punch stations (not Hawaiian punch that would have been cool though--but punching peoples cards to track how many miles they were accumulating).  These are good boys, mark my words.  Johnny is pointing out the paparrzzi (Debra) to Colin and Carter.  Chase just knows to smile and show his good side for the cameras.

Every bike-a-walk-a-thon needs and limo golf cart soooooo, we borrowed one from Dean Callahan.

Waiting for the race to begin.

Cute chicks came from all around for MY SON.  I'm so proud!

Charisty and Yessenia walked the entire time--they are true friends.  Walking for them is not as easy as it is for most of us---if I could borrow their sweet hearts I'd clone a billion of them.

Front Page News

Look who made the front page....not to brag or anything!!http://www.theroyalregister.com/news/article_6e450c2a-8649-11e0-a52c-001cc4c002e0.html

This week we...

 

Monday=Violin/Piano recital in Moses Lake for these girlies.

Tuesday=The first little league games,  Carter 5 pm field 1 Zoe 5 pm field 2 Sierra 6:30 pm field 3

(no pics yet)

 Wednesday=High School Evening of Honors.  Jackson was recognized for being on the honor roll and for random acts of kindness.  The RAK was from the Life skills teacher at the High School.  She said Jax and Tanner know the names of all her students and make a point of poking their heads in her room when they walk by to talk to the kiddos in there.  They also look out for them at lunch and other events.  Jackson is talking to Yesenia in this picture --- she adores "yackson" as she calls him.  (sorry that sounded pretty braggy, but I think that is a pretty great award for him and Tanner to get)

 Thursday=Sierra game 5pm , Carter bye, Zoe game 6:30 pm Carter Kindergarten program 6:30 pm.  See any conflicts there??!!

I'm hoping there are some better pics on my video camera because these are pretty bad.  To be fair--Carter never stopped moving!

 Friday=Mr. 8th grade program.  Sammi and Bailey put on this whole event for their end of term "passion project".  They did an amazing job.  It was attended by more than 125 people and they raised over $1000.00 for Histiocytosis, plus it was fun!  Way to go girls.

Wednesday was also Uncle Matt's 31st birthday but darn it if I can't move the picture to it's rightful place!

 Saturday Michael and I left for Spokane, we had tickets to see "Wicked"(loved it) and we are spending the weekend it's our belated anniversary weekend---Happy 18th sweetheart!

Maddie is my heart hero

Today, Royal City's most famous patient left for Seattle for her third, and biggest heart procedure. About 75 of us lined her road to send her off with our love. We do love Maddie and her family, so please pray for her, pray for her family. The surgery is on Tuesday.  My sister Brenda is Katie and Brian's age, I'm MUCH, MUCH older (!!), but it has been good to have Katie to talk to. She understands my heartache over Jackson's health. She knows first hand the ridiculous guilt I feel as a mother. She empathizes about insurance and medical expenses and spending hours on the phone.....to get not enough done. And however nice it is to have someone else who "gets" all that, I wish she didn't. I wish Maddie had a whole heart as healthy as her brothers. I wish Katie hadn't a clue what oxygen sats were, or child life services, or Bactrium, or the name of her scheduler at Seattle Children's, or what floor the family laundry is on, and the cafeteria, and the sibling playroom, or what doors to go out of for cell service. But she does and she always will.  And of my many, many blessings I count my "Medical Mom" friend Katie high on the list. 


So go get 'em Maddie, I am keeping my pink bracelet on till you get home safe, sound, and PINK!!


Maddie at the Harvest Ball in Tri-Cities.

Maddie the "Cover Girl"

Balloons for Maddie.  We let them go when they drove up the road.

You can't read it with my mad camera skills, but the bracelet says, "Maddie is my heart hero". 

 Katie had them made---love it!

A bike-a-walk-a-thon for Histio Heroes

We have talked about it for a couple of years, but now we have pulled the trigger ( I hope it's the only trigger pulled before it's over).  We are having a bike-a-walk-a-thon on June 11th  to benefit research into Histiocytosis. I am going to put the article Michael wrote about it on the blog, he did a good job.  Then we (o.k. he made it, but I "perform" it) made a power point presentation to show to all the students in Royal School District.  So far I have bawled my way through the Junior, Sophomores, Freshman (Jax for some reason wasn't sitting up front with his friends, but in the farthest back table afraid of getting wet like at the shamu show I think) high school classes, and 6 of the 26 classrooms at Red Rock Elementary, and have scheduled to hit up the middle school this Friday.  I am hoping(?) to go through all of Red Rock Mon. thru Thurs.  So far over 300 kiddos have taken forms.  I am sure not all the parents are going to allow those 300 kiddos to participate but it's an encouraging sign. Michael has pulled in some corporate sponsors but feel free to share Michael's letter with any corporate big wigs in your life---pretty please!  Jacquie Dorsing and Debbie Olsufka started a cinch sack fundraiser to help cover the costs of our bike-a-walk-a-thon and two cute girls from Jackson's class come up to me after the power point presentation and told me they were going to start selling cookies and brownies at their church on Sunday to raise money for Histio Hereos!  Samantha and her friend Bailey are putting on a "Mr. 8th grade" program, May 27th, and all the money from tickets and the raffle they are organizing for that night, they are donating to Histio Heroes too.  So many times I have had the thought, I want to be the one helping with the fundraisers(I'm really a very good helper), not the one with the sick kid hosting the fundraiser, but I get so many offers of help, so many tender, teary, kids hugging me, that my courage is bolstered.  We have so many great friends and family helping us too.  Soooo, come if you can come, pull in the Gates foundation if you have the connections, and pray my tear ducts stop leaking sometime soon!


2011 1st Annual Histio Heroes Bike-a-Thon/Walk-a-Thon



The Disease


Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lungs, liver, and/or the central nervous system. The effects of the disease can result in progressive multi-organ involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening.


The vast majority of people diagnosed with Histiocytosis are children under the age of 10, but it is also found in adults of all ages. It is approximated that Histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is considered an "orphan disease," meaning it strikes too few people to generate government-supported research.


The Face


Jackson Noftle, a local Royal City resident, was diagnosed with Histiocytosis when he was just 4 years old. It was discovered that the disease was attacking his skull and orbital bones, pelvic bone, and pituitary gland. At that time he underwent 6 months of chemotherapy to stop the progression of the disease, but was left with permanent damage to his pituitary gland. One of the pituitary functions is to regulate growth hormone. Jackson has been taking growth hormone injections since the age of 8 to supply the necessary growth hormone that his body in no longer capable of producing.


Around two years ago Jackson began to exhibit some new symptoms that were feared to be a return of Histiocytosis into his life. After some intense and prayerful research by his mother, help from his doctors at Seattle Children's Hospital, and a trip to Houston, Texas to visit Dr. Kenneth McClain at the Texas Children's Cancer Center, our fears were realized. Jackson was diagnosed with a secondary and more debilitating form of the disease known as Neurodegenerative Central Nervous System (CNS) Histiocytosis. This form of the disease sometimes occurs in the teenage years of those who had the initial form of the Histiocytosis in the first years of life. It attacks the brain stem and can leave its victims with tremors, difficulty with walking, speaking, swallowing, and learning. For Jackson, lightning did indeed strike twice. He underwent a second round of chemotherapy under the treatment protocol established by Dr. McClain in 2010 and is dealing daily with the effects of his disease. The disease affects his fine and gross motor skills, has slowed his speech and has made school and sports much more difficult.


Jackson is a caring and resilient 15 year-old who has been an ambassador for his disease and other important causes both locally and regionally. He has raised funds for Histiocytosis in the past by selling rubber bracelets and hosting a local 5K run. He has also given presentations to local organizations such as the Lions' Club about Histiocytosis and his life with it. In 2009, he was asked to be a featured patient at the Seattle Children's Hospital Festival of Trees, which raises funds for uncompensated care and allows Seattle Children’s to provide quality medical care to all children of the region regardless of a family’s ability to pay. In 2010, he was also a featured patient at the Children's Hospital Guilds of the Tri-Cities Annual Harvest Ball fundraiser. At the Harvest Ball he gave a brief presentation and also became "Mr. January" for the 2011 Children's Hospital calendar, making him literally the "face" of Histiocytosis in Washington.


Finding a Cure


The Histiocytosis Program at the Texas Children's Cancer Center, is associated with Texas Children's Hospital, the largest pediatric hospital in the United States. The Histiocytosis Program Director, Dr. Kenneth McClain, sees over 100 new Histiocytosis patients per year, and has over 400 active patients in the clinic. Children from all over the United States, and as far away as Spain, Ecuador, and the Philippines make the trip to Texas to be seen and treated by Dr. McClain. (Jackson has been to see him twice so far.) Dr. McClain is one of only a few physicians in the world researching a cure for children with Histiocytosis.






The Histiocytosis Research Laboratory, through the dramatic increase in the number of patients, has been able to develop and expand clinical trials of innovative therapies and leads the world in research of Histocytosis. This clinical experience provides the unique opportunity to establish clinical and biologic correlations that no other center in the world can. Dr. McClain's gene expression research has recently disproved long-held theories about the origin of Histiocytosis and led him to refocus on other more likely causes. He and his associate, Dr. Carl Allen, have also developed a new and successful treatment protocol for treatment of Neurodegenerative CNS Histiocytosis (Jackson's current form of the disease). Past treatments could only keep a patient stable, but not bring about improvement in their symptoms. The new treatment resulted in significant improvement of symptoms in over 60% of the patients in the initial study.


Histio Heroes Research Fund


The Histio Heroes Research Fund has been created by a group of histiocytosis families from across the country to help raise funds that will support Dr. Ken McClain and Dr. Carl Allen in pursuing important and ground-breaking research into histiocytic disorders. This research deserves the financial support which will enable continued progress to be made towards better understanding and treating a disease which has not been well understood, and which will have a significant impact on Jackson's life and the others around the world in desperate need of hope and healing.


The Event


On Saturday, June 11, 2011 you too can actively participate in finding a cure for Histiocytosis. Jackson, his family, and a legion of wonderful volunteers will be hosting the 1st Annual Histio Heroes Bike-a-Thon/Walk-a-Thon in Royal City, WA to raise funds and awareness for the Histio Heroes Research Fund to help Dr. McClain and Dr. Allen in their search for miracles. The event will be held on the grounds of Royal High School. Those who wish to bike will make laps on a one-mile course laid out on school grounds. Those who prefer to walk will make laps around the track. Either way, participants will raise money for important research by collecting donations in advance of the event in support of their participation.


The event will take place from 4pm to 6pm, and will be followed by dinner and prizes for all participants. In order to make this event a success we obviously need as many participants as possible to collect as many donations as possible, but we also are in need of event sponsors to help cover the expenses of undertaking such an event. Your sponsorship will be greatly appreciated and will be recognized through local media, on-site at the event, and/or t-shirts distributed to participants. Please help make a difference in Jackson's life and in the lives of these young patients affected by Histiocytosis.

Working on my Nagging badge....

Jackson is working on getting his Eagle Scout and as a result I am apparently working on my nagging badge. Here is a "small sample" of the nags I have employed in my desperate attempt for a nagging badge... Have you called Farrah?--How many people are coming on your work day?--Do you need to call the scouts and remind them?---What scouts did you get a hold of?--Do we owe Brandon anything for using his boom truck?--Do you know or are you guessing that?--What web sites did you got to for Chimney stones?--Did Grandpa say 16 x16 or 16 x 8 it makes a difference you know...--How are you getting water for the motar?--What time does Grandpa need you?--Did you check Western materials for chimney stones?--What supplies do you need for this saturday?-- Did you record the number of people and hours yet?--How much is the grant from SHOC?--What is the city expecting to pay?--And the nagging goes on and on, really the only way I won't get my nagging badge is if they brick me in the new sign!  I could do quite a long post on my true scout feelings, but I will resist, I'm afraid they wouldn't give me the nagging badge if I open that can of worms.  Things have been crazy around here, I subbed 5 days last week and 3 days this week, I have three days next week too---the house looks and feels fairly neglected.  Zoe and Carter are in soccer, and I am coaching Zoe's team (I wonder if they have an inept coaching badge?)  Sammi is in Softball and we enjoyed 30 mph winds yesterday at her first game--good times!  On the bright side her game in Warden was over run with squirrel type thingy's and the 3 youngest spent the whole game with the Chief of Police's 3 youngest trying to commit a Federal crime by intending to capture and harm the weird rodent creatures.  Another bonus of the Warden game was that because we left straight from Warden to go to Moses Lake for violin/piano lessons I didn't have to do any housework.  I left the house at 7:45 am and got home at 9:00pm.  Nothing like avoiding the mess if you can.

Front & back of the old Royal City sign.

The brains behind this fiasco eagle project, Grandpa Kent and Brandon Jenks.

Good turn out scouts---yes, that adds up the hours quickly!

Reading play in Kindergarten, seriously the best play I've been too in ages.

Some Kindergarten smarty is in 1st grade read well now!

8th grade history wax museum.  Ever heard of Bonnie Guitar?  If not ask Sammi and Bailey they can tell you all you need to know.

Green soccer team won every game--not coached by moi.  Carter had 3 goals in  games.

Blue soccer team lost every game---coached by moi, could there be a correlation?

Sammi hitting--sorry about the fence, I would have had to WALK to get a clear shot.

Second base wonder--Sammi Noftle.

Sierra and Zoe April students of the month.  And not to brag or anything, but Sierra also got an award for making the 100 point AR club. 

Stable

Jackson had his tests at Seattle Children's hospital on Tuesday and Wednesday. Since this is our spring break, we got all the kids up at 5:30 am Tuesday and loaded the GT for the trip over the mountains to Seattle. Not one of the five kids felll back asleep, I asked for family together time and I was getting it, with a vengeance!! Sierra was car sick within the first 30 minutes.  We got checked in at the hospital and Carter and Zoe went to the sibling play room. Sierra and Sammi went with us to take Jackson to Neuropysch for his first tests. He was there from 9am until 12:45. During that time Michael took Carter on a special "date". Michael had discovered the Pacific Science Center had a special Star Wars exhibit and we had been telling Carter all about his special date with Dad for days.  When he found out what the "date" was he told me he was "way excited, like wohoo excited"!!  They went to the Pacific Science Center and Carter saw the thousands of items displayed from the making of all the Star Wars movies.  Meanwhile back at the hospital the girls got a reprieve from Grandma and Aunt Courtney.  They came and brought Avery, Adalynn, and Aftyn.  We (just the girls, not poor Jackson) all ate lunch at the hospital cafeteria.  Then those 8 left and I brought a plate of food back for Jax to eat while he finished up his testing.  He got done just in time to head to audiology for his BAER (brain stem auditory evoked response) test.  This test didn't go so well, not that Jackson's disease is worse it's just that it is the most quantitative tests our oncologists have, but in order for it to be a good "reading" and valid test Jax needs to be asleep for it.  I thought that would be no problem since we had gotten him up so early and he had endured nearly four hours of testing already that day.  But apparently he just couldn't get into a real sleep, they can tell that from the brain waves he produces.  He felt like he dozed off more than once but the test includes introducing sound in increasing volume and he just couldn't get into a real sleep.    We will now have to repeat this test in 3 months and give Jackson some atavan to help him sleep for it.  Tuesday night we let the kids swim at the hotel for a couple of hours and then all went out to eat at Johnny Rockets, the waiter was great with the kids and since Zoe and Avery didn't get into a fist fight I call dinner a success!!  After dinner we got everyone in Jammie's and settled watching cartoons and Jax and Sammi (Sierra assures me she was the only one doing any real babysitting!) graciously babysat while the adults slipped out to the U village shopping district which was 1 block from the hotel.  We bought necessary things like a poultry thermometer and cups with wrap around straws.  Jax and I took the shuttle from the hotel to the hospital Wed. morning.  Our MRI appointment was for the IV start at 9 am and MRI at 10.  I knew it was going to be one of "those" days when the IV wasn't even started until 10:15.  But after we were taken back and Jax got into a hospital gown they had us waiting in the hall for his MRI room to open up.   They brought out a tiny little kiddo who looked so injured, I'm guessing a car wreck and all tension from waiting almost 2 hours left.  Amazing what a little perspective can do for you.  I got to be in the room for Jackson's MRI.  It is freezing cold in there because the Magnets in the MRI tend to create a lot of heat---better for the machine to be in a cool room I guess.  Jax had to hold VERY still for about 45 minutes and be injected with dye half way through.  My ear plugs couldn't drown out all the noise from the MRI, that is one loud machine.  Michael and Carter picked Jax and I up after the MRI and we raced to Northtown to meet the family for lunch in the food court.  Then we took all of our kiddos and headed back to the hospital for Jackson's last two appointments.  We had a good appointment with his Endocrinologist, Dr. Taplin.  He took the time to explain to us alot about Jackson's pituitary gland and his future medical needs.  It doesn't seem to early to start planning for his eventual transition to Uof W which will probably be his hospital for his adult life.  I think Michael and I were both surprised to learn that Jackson will always have to have his hormone levels monitored, because with a damaged pituitary gland they can stop functioning properly at any point.  I though we were out of the woods with his thyroid and such because they were fine now, but apparently that isn't the case.  The thyroid hormone is easily replaced by medication so I won't borrow any trouble by worrying about that now.  Jax was very close to 5 feet 5 inches which means he grew 4 inches in the last year which is great!  We had a bone x-ray and hope that those results come back 18 to 24 months delayed so that he can hopefully grow another 3 to 4 inches before he has to stop the growth hormone shots.  Once your bone age is 16 most people don't get enough benefit to continue the HGH shots, and the insurance companies won't pay for it anymore.  The last appointment on Wednesday was in Oncology with Dr. Rebecca Johnson.  She did a great job validating Michael and I in our different opinions as to how Jackson in doing!  No easy task there!  She didn't have the results from the Neuropsych tests, BAER or MRI yet so those still have to be looked at.  Her exam should some very slight changes.  Not enough to alarm her but enough to make her order another BAER in 3 months and in her words "a possible trip to Houston if anything else goes south".  She could see what I saw in Jackson's speech.  His right side of his mouth isn't moving as much as the left side.  But overall she declared him still "stable" which is great news.  Everything is so slight that we are going to keep a close eye on things.  I just don't want to make the mistake I feel I made 2 1/2 years ago when I didn't realize that he had ND CNS LCH.  Actually had never even heard of ND CNS LCH.  She reassured us they won't let Jackson slip through the cracks and that we and they will be hyper diligent in his behalf.  All we can ask for.  We are reminded once again of our privileges here, in our little corner of the world---good medical care, good doctors and good family and friends who support and love our son.  It's real easy on days like today to count our many, many blessings.

 This hovercraft actually moves.  Michael said it's teathered down but it has high powered blowers that lift it off the ground then you can steer it.  All the pictures are blurry because Carter had it spinning good and fast.

                                                     Not Carter's father---Luke's father.

After the Star Wars exhibit they went through the rest of the science center.  Here Carter is kicking it in a dinosaur footprint.