Pediatric Cancer Organizations in Nebraska

                                                     https://www.sammyssuperheroes.org/

  http:/www.myangelsamoungus.org

https://www.campcoholo.com/

I cannot tell you enough great things about these  organizations.  Each of them help families with children with pediatric cancer.  Each of them have been there for us since Emily was first diagnosed with cancer at the tender age of 4.  They could have been there through treatments and stopped caring or contact after that point.  They continue to be a support in many different ways from supporting our own foundation, to honoring Emily in different ways and including her sister on events. We love and appreciate our Angels Amoung Us, and cheer on our Sammy's Superheroes and embrace Camp CoHoLo for the doctors, nurses and survivor volunteers who keep our children safe and loved while enjoying life with others like them at camp.  Please find out more how similar yet different these great people are and their non profits.  We support and value them each.

Pediatric Cancer Month

 This month, each week we will be talking about pediatric cancer.  

Our Emily battled lymphoma not only once, but twice via UNMC/Children's Hospitals in Nebraska!

Here is a resource to get you started.

UNMC.EDU states:

The Pediatric Hematology/Oncology and Blood and Marrow Transplant division is a regional referral site for the diagnosis and treatment of infants, children and adolescents with cancer and blood diseases. We offer the state's only pediatric hematologists/oncologists who are nationally known experts in their fields.  The division is comprised of physicians and health care professionals with decades of experience dedicated to patient care, research and teaching.  We offer a comprehensive range of services provided by a team of health care professionals at both UNMC and Children's Hospital & Medical Center.  The division is a member of Children's Oncology Group (COG), and members are involved in national and international research through the support of the Pediatric Cancer Research Group (PCRG). 

Furthermore, the American Journal of Medicine found that: SIOD is not a classical cancer predisposition syndrome in which there is increased occurrence of multiple cancers although there is an increased prevalence of NHL (Non Hodgkins Lymphoma, which Emily had twice)(insert my own) and possibly osteosarcoma. The detection of EBV in two of the three NHL tumors suggests that the increased prevalence of NHL is attributable to the immunodeficiency.

Next week we will look at some outstanding organizations who help pediatric cancer families, like ours and other friends we have met along the way, here in Nebraska.

Face Time

 https://www.caringbridge.org/visit/emilykoesters/journal/view/id/6127b82ed4c6d833fb7919cf

Click on the caringbridge site for the one week post op update on our little giant.

Eagle Eye?

 Here is our latest update on Emily's CaringBridge site, which this site can be reached in a link on this page anytime to get the full scope of her SIOD medical journey.

https://www.caringbridge.org/visit/emilykoesters/journal/view/id/61214d8facd8c03d7e8b45f0

Eye Surgery

 

Emily and I are heading back to the University of Iowa for her eye surgery Wednesday.  We hope to get a room with the Ronald McDonald House there, and if not they can get us a reduced rate at a nearby hotel prior to surgery and for post op.  We've been fortunate to stay at a few RMDH across the country over the years as we go to different hospitals for her SIOD rare needs.

So what is being done exactly?  Well... in simple terms, yet not the full scope- yes, she has a detached retina and it needs repaired.  She also has pigmentation scarring in both eyes.  We knew this and were being followed for it to see if it was an SIOD thing or something else. The only other SIOD patients ever to be documented with any kind of retina issues were a female sibling set documented back in 2003 and they are no longer living.      (Although the pathology of SIOD is currently not well understood, the underlying immune dysfunction of these patients may contribute to development of these ocular conditions. These findings may help to elucidate the pathophysiology of SIOD and lead to potentially new treatment options.) Ophthalmology Journal

As our new Iowa ophthalmologist told Emily, "Thank you, Emily.  I am learning something new from you today."  

So in a nutshell- the surgeons have not ever seen or worked on an SIOD kiddo, but the one surgeon is highly skilled in macular degeneration and will be overseeing her surgery.  They are hoping to repair all  of the left eye of the retinal edema and the multiple breaks in the retina, but not guaranteeing full vision repair or that the repair won't need to be done again.  They will also provide some drops for the right eye to hopefully keep it from detaching.

 

Emily continues to teach us all about SIOD, about courage, and about believing in possibilities as she defies ALL the odds stacked against her.  Now  excuse me while I do laundry, dishes and spend time with the fam before we need to divide and conquer again.  Stay tuned...

I have a feeling we're not in Nebraska anymore...

 Much has happened since this Little Giant turned 18.  Our annual birthday blood drive- saved 99 lives- our local county fair where Emily and her sister brought a prize winning black bantam cochin chicken- they named Rose and won a purple and blue ribbon with her for showmanship and cage showing.  But the most precedent thing now on the top of our list is Emily's recent medical battle that has docs baffled currently- again.  

Monday night Emily felt like she had something in her eye and things were a bit blurry.  By Tuesday evening it was so bad she could barely see out of her left eye and she was very worried, so I took her to our Children's ER in Omaha, NE.  ER docs brought in the Ophthamologist and she discovered Emily had a detached retina.  She referred her Wed to a retina specialist in Omaha the next morning.  There was also pigmentation scarring ( which we knew from a few years earlier) and it is in both eyes and the doc feels it may be a genetic thing.  So now we are in Iowa.  Emily and I  are bouncing back and forth from my folks in Cyclone territory to Hawkeye territory at the University of Iowa Hospital until the genetic eye specialists can determine best next steps which more than likely will require surgery.

Daddy Joe is holding down the fort and taking our youngest- the 5th grader to her first few days of school and Grandma J is helping as well where needed with the tween and the animals until we know more and know when we will be coming home and Emily can start her Senior year.

The Big Day is Near!

 The Big Day is Near.  Tomorrow.  July 8, 2021.  Emily will turn 18.  A magnificent day filled with so many mixed emotions.  My mind is swirling with so much that I will try to get it out so that it makes some sort of sense.

Firstly, let's chat about the turn of 18 and what that means for us with Emily since our last blog on "Navigating Transitions".  We have met with and signed a gazillion forms with the Adult Aged and Disabled Waiver/Medicaid case manager from League of Human Dignity.  Thus far this person and a few others with LOHD have been very informative and nice as well as accomodating.  Today we met again to sign a few more papers that will go into play tomorrow.  Emily will actually have a brief overlap of care this month as her birthday falls in a state of limbo for the month.

Next, today is our last day with our home health services nurse that we have had for the past 7 years.  We have celebrated with ice cream, hugs, and the knowing that we will remain friends.  As we tell Emily, now we can see her like our other HHN Emily had for 7 years before that- for FUN!  And we do!  Thank goodness Children's keeps kiddos til they are 21 and we can stay there for much of Emily's needs.

Our respite provider- Grandma- will remain the same until Emily is 19 as well, but now instead of respite it is called CHORE!  I find that name hilarious. I mean really- CHORE?  Come on DHHS- you couldn't think of more appropriate, less offensive name?

All of Emily's UNMC doc specialists are beginning to be transitioned to adult care by the age of 19.  This should be good.  New set of eyes can be good and the opportunity to train and educate more about SIOD and yet, well, I will leave it at that.  Read between the lines.

As the photo states by CHAD, Emily continues to defy her SIOD disease and inspire many through her journey.  We are grateful and blessed because of this.  As my momma heart cries tears of joy and has some tears of agony mixed between due to all we have lived and know of this disease, I still BELIEVE in a future for our Emily and for our Little Giants Foundation to help find a cure and prolong the lives of these children with SIOD.

So join us in celebrating Emily's miraculous BIRTH day by:

1. Donating/ pledging monthly what you can to https://thelittlegiantsfoundation.org/donate-index-impact 

    We are so close to  one of our 50K project research goals!  Can you help get us over the top?

2. Donating blood: Little Giants Foundation- In Gretna Blood Drive 

Online

07/10/2021
09:00 AM  - 2:00 PM
Sponsor code: LGF
Little Giants Foundation- Gretna
919 Village Square
Gretna, NE 68028

3. Register for our 8th Annual Farm Run ( in person or virtual/hybrid) at ( price increase tomorrow) :

https://ultrasignup.com/register.aspx?did=85110