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.