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Hilden-Smutzler Family Relief Fund - Medical Expenses Fundraiser

$13,033.10raised of $60,000 goal
21%

Organizer: Elizabeth Allen Beneficiary: Kyra Hilden

As you know, the Hilden-Smutzlers are an amazing family who are facing extraordinary challenges. Their oldest daughter Kyra has been struggling with Primary Immunodeficiency for almost two years....

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As you know, the Hilden-Smutzlers are an amazing family who are facing extraordinary challenges. Their oldest daughter Kyra has been struggling with Primary Immunodeficiency for almost two years. Usually a vibrant and energetic child, she has been bedridden since August with a number of infections. She is currently suffering from weight loss, vomiting, and terrible headaches, and needs constant care. She was just hospitalized Monday, February 20th due to her vomiting and weight loss. She will have to have some type of feeding tube for nutrition. Doctors continue to run tests to try to focus in on her specific autoimmune disorders and the reasons for her GI problems and headaches. But this is just the latest--Kyra has had many many tests and procedures over the last two years to diagnose and help her. For example, Kyra has infusions every three weeks (called Intravenous Immunoglobulin or IVIG treatments). Many of these tests and procedures have been quite specialized and not always covered by insurance. Tim and Natalie are still paying for inpatient hospital stay and lab work from 2010 (in addition to medical expenses from 2011 and 2012). This most recent hospital stay is already very expensive. Tim and Natalie just hired a wonderful helper for 20 hours per week to help with the constant and extraordinary demands the family is facing. Tim uses Family Leave Act to take time off work but this is unpaid, so they have lost income while incurring these additional significant expenses. This is a critical time for Kyra; she is hospitalized and depending on how the latest round of tests go, she may need to travel to National Institutes of Health for specialist team consultation. In the future, Tim and Natalie are hopeful that Kyra could return to school with the aid of a Robotic Avatar which allows students to attend school remotely (http://www.vgocom.com/remote-student). Tim, Natalie, Kyra, and Tess have been fighting the good fight for almost two years now. With all this upheaval to every aspect of their lives, it has been a scary, exhausting, and painful time. I know all of us who care deeply for this family want to do whatever we can to help them. Thank you so much for your help which can bring this wonderful family some measure of relief as they battle this terrible illness.
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Updates

Updates

02/24/2013
by Elizabeth Allen

Februray 24, 2013

A "goodbye" from Beth...

This online fundraising forum for Kyra began one year ago, when Kyra became incapacitated by terrible nausea and vomiting (due to pancreatitis and pancreatic stones), which led to a 3 month hospitalization. We all hoped for a rapid and complete recovery but the last year has continued to present many challenges to the family. We have been heartsick for them and amazed by their unrelenting perseverance and resourcefulness as they have done everything possible to help Kyra heal. This is a time of renewed hope as Kyra is making slow, steady progress at the Mayo clinic in Rochester, MN.  Each little piece she reclaims is hard won and precious.  They will be leaving Rochester on March 2nd and Kyra’s goal is to be able to walk onto the private jet that will take them back to Colorado, courtesy of an unbelievably generous donor who is part of therewithcare (this donor also provided a rental car for the 2 and ½ months they have been in MN). Natalie and Tim are optimistic that Kyra will meet that goal.  She will continue with PT and OT once she arrives back in Colorado and also will continue to work on getting her nutrition the old fashioned way.

As our time with YouCaring comes to a close, I just want to summarize the remarkable things that this website, along with many other fundraisers and hundreds of people in various communities have accomplished. Over $100, 000 was raised for this family! There were 106 supporters on this site who have given, but many, many more have sent checks directly to me. Moreover, numerous people have held all sorts of fundraising events: art sales, a personalized quilt pattern sale, the golf fundraiser, Pedal for Kyra and other Heatherwood  Elementary fundraisers, the Milan MN fundraiser,  the Boulder County Sheriff fundraiser, Boom yogurt shop fundraiser, many Café Kyra events, Makenzie’s 11th birthday party, PAL/Employee Assistance funds, Cycling Gear sale…can you believe this list?

Although we will be closing down the fundraising site on Youcaring, Natalie still plans to write at least a few more updates in the coming months. Please email me at kyrafundraiser@gmail.com and I will add your name to that distribution list. If you would like to make a donation, please send to Beth Allen, PO Box 805, Littleton, CO 80160-0805. As always 100% of these donations will go directly to the family.

And, as always, you have my deepest gratitude for being a part of what was “right” about this last year. Thank you.

Beth






02/03/2013
by Elizabeth Allen

February 3, 2012

An update from Natalie...


Tim and I both work in professions that involve betrayal.  As a physical therapist, Tim witnesses betrayals of the body. As someone trained in clinical psychology, I witness betrayals of the mind. Because of the complex intersections between body and mind, we also bear witness to assaults that begin one way (say an accident) deeply altering the other.   Perhaps these professional experiences gave us a slight edge when Kyra’s body underwent an ultimate betrayal, a loss of the ability to sit up, let alone stand.  

 

On June 1st, 2010, Kyra contracted a nasty sinus infection (I remember this date vividly because the day prior was Memorial Day and that day was one of those splendid, perfect days – Kyra and I spent that morning walking the 5K Bolder Boulder with her friends and the rest of the day was spent with family and some of our most cherished friends, Rick and Maria, who were visiting from New York). There was something about that infection (or something about that infection plus the repeated illnesses she had experienced during that school year, or something about that illness plus a genetic predisposition) that sent her tumbling down a rabbit hole.   Literally and figuratively, her world went topsy-turvy and she could not right it. Or, more specifically, upright it.  We watched Kyra struggle to sit up for even a minute at a time. We also watched an illness that should have cleared up within a week, take a prolonged grip on her and then morph into a set of new, confounding symptoms.   

 

What on earth could cause a child, eager to set out on her summer adventures, such difficulty? At least part of the explanation was hidden in plain sight. Actually, in plain sound.  When we first began bringing Kyra to medical appointments, the nurses/doctors would often comment on her rapid heart rate.  We attributed it to nervousness. In retrospect, that attribution was mostly misplaced. Although Kyra was sometimes nervous (if she knew there was going to be something like a blood draw), she often was quite calm, all things considering. If anything, she looked like a kid who was seeing the doctor because of the flu. She didn’t have the energy to be nervous.  It took the right doctor to interpret that rapid heart rate in a different light.  This is the doctor who assessed Kyra for Postural Orthostatic Tachycardia Syndrome (POTS).  POTS involves a dysregulation of the autonomic nervous system. The autonomic nervous system regulates things like blood pressure and heart rate, things that are assumed to be mostly involuntary (Wikipedia has a pretty good description of POTS for anyone who cares to learn more).  The more severe forms of POTS can be disabling, life altering.   It is more than safe to say that Kyra’s has been disabling and life altering.  Prior to our arrival at Mayo, she had been in bed for 17 months and in the hospital for four of those months.

 

Syndromes are funny things.  The syndrome label often is used when doctors see a pattern of symptoms across patients but really don’t know what is going on.  The label is a type of “best guess” to get the medical and research balls rolling.  As a diagnosis, POTS has only been on the block for about a decade and everyone is still trying to figure out what type of neighbor it is. Who knows if this diagnostic category will hold up over time? It may get spliced into subcategories. It may be subsumed under a different disease process (or processes).  Because POTS is a fairly recent discovery and is relatively rare, it was crucial that we find doctors who were familiar with POTS and the cluster of symptoms that often accompany it. Mayo (in Rochester, MN) is one of the only places that has seen many children (and adults) with POTS so we were very relieved when we found out in December that they would expedite Kyra’s case (there were only a handful of hospitals that we had to choose from and all had wait lists of over a year). 

 

Here is what we have learned since our arrival in mid-December (and from our own research): the onset of POTS typically follows an infection – in MN they usually see it with mono and Lyme but West Nile can be a culprit as well (West Nile is known for its neuroinvasiveness); POTS is related to connective tissue disease processes (we have a history of these in our families); at least 1/3 of people who receive a diagnosis of chronic fatigue syndrome (which has been renamed myalgic encephalomyelitis) also meet criteria for POTS; hormones appear to play a role in the development of POTS; POTS is associated with low iron stores and anemia; many children with POTS have GI symptoms as well; some new research in an adult population suggests POTS may be an autoimmune disorder, possibly of the cardiac system. The very good news is that many kids with POTS outgrow it by early adulthood. The research is still quite fragmented but there is enough of it to start assembling a scientific story of these kids.

 

Right before departing for Mayo, we met with a metabolic specialist at Children’s hospital in Denver and his assessment was that Kyra most likely has a disease process that manifests neuromuscularly. Interestingly, I just ran across a disease in certain breeds of dogs called Exercise Induced Collapse – it appears to be a metabolic neuromuscular disease and has many of the same properties as POTS/Myalgic Encephalomyelitis. The University of Minnesota recently discovered the gene responsible for it.  It is highly unlikely that they will discover a single gene for POTS but they certainly may find genetic contributions to it. I found out about Exercise Induced Collapse because we are thinking of getting a dog (when our lives settle down) and I have been researching potential health complications for various breeds. One of our top contenders, a boykin, is prone to EIC.  How crazy is it that out of all the breeds we could select from, we chose one that has some of the same vulnerabilities as Kyra?!  Sorry to say, that dog is off our list, at least for the time being.

 

So, here we are at Mayo.  We have been here since the 15th of December and will remain for another two to five weeks.  We have had a very positive experience and our primary doctor has assembled a strong team to help Kyra regain her health.  The first step in her care was to assess for metabolic causes of her low energy.  Kyra’s ferritin (which indicates how well iron is stored in the body) and hemoglobin, (which carries oxygen) are both low so Kyra receives an iron infusion about once a month.  She also has been on immunoglobulin treatments every three weeks since October and it appears that those have helped reduce her vomiting and also help protect her from various illnesses. 

 

The next step was to begin intensive rehab, which includes Physical Therapy and Occupational Therapy and meeting with a psychologist who works with children with POTS who develop GI issues (she will help guide the reintroduction of food that will take place once Kyra is stronger).  On a typical day, Kyra has PT and OT for three hours and then we continue to carry over the exercises for the rest of the day at home (which, for the time being, is the Ronald McDonald House – can’t even begin to say enough great things about this facility).  The first month was very (very!) hard for her, as we knew it would be.  Fundamentally, Kyra had to go to PT and OT each day with severe flu like symptoms, including nausea and vomiting.  Just thinking about this almost makes me cry but Tim and I know this is one of the best ways to get a dysregulated body back to a place of health.  To get through this, I keep reminding myself that we have been in hell so we can do hard.  I also knew that it absolutely would pay off, which it has. 

 

Going into this, we knew the two main challenges were going to be getting her upright after a year and a half of being bedridden and getting her eating again (she has not eaten anything for a year and currently is being fed through a PICC line).  She basically has met the first challenge (she can sit mostly upright in a reclining wheelchair for several hours) and is working on the second (she can successfully swallow a few drops of water and we are now moving on to a few drops of smoothie).  We absolutely needed a team of professionals who were very familiar with POTS to help with her recovery and we have been so appreciative of how dedicated and supportive they have been. Each day, we see a body and mind that is betraying Kyra less and less. Each day, Tim and I move toward resuming our roles of “just” being her parents.   

 

Even more rewarding is watching Kyra and Tess resume their roles as sisters.  Tess has been up here since we arrived and will stay for two more weeks (a huge thank you to Heatherwood Elementary for being so supportive of Tess’ sporadic attendance this year).  Tim returned to work last week so I rely heavily on Tess to help me with Kyra (she loves this role and performs it better than many adults would).  Mayo does not have valet parking so each morning I drop Tess and Kyra off at the main doors so that I can park. Tess brings Kyra up to the 16th floor and gets her checked in for her appointments.  In Rochester (and specifically Mayo), a mother does not have to concern herself with safety as there are many people looking out for them as they make their way through the building (the doormen look forward to them coming and love to tease them).  Plus, for those of you who know Tess, you just do not mess with her.  That child’s street smarts are already way too well developed. We have been preparing for her teenage years since she was about three. 

 

Both Tess and Kyra have completely made themselves at home at the Ronald McDonald House and participate in all of the events that are offered.  The pet visits are some of our favorites. Tess was invited to be one of the child greeters at the annual Ronald McDonald House fundraiser Saturday night, which included purchasing a beautiful dress, getting hair and makeup done, and riding to the event in a limo – the limo is what sold Tess on the idea. We had such a great time watching her, and four other girls, get made up for the event. The other girls were/are patients at Mayo, and at least for the time being, their stories are ones of triumphs over tragedies. Kyra has no interest in physically partaking in anything that involves too much bling (she is a Boulder girl at heart) but she happily observed all that was involved in preparing a group of girls for a night out on the town.  

 

Even in betrayal there is beauty.

 

 

 

 






12/27/2012
by Elizabeth Allen
<label>      Date:                        Friday, December 28, 2012</label>
Hi all,
Has anyone been wondering how the family traveled to Mayo?  They were able to go by private jet --which was really the only way they could have traveled. The trip was DONATED by a donor through a nonprofit organization called There With Care--for Families and Children facing critical illness. They also provided a rental car once there. Their site is www.therewithcare.org.  It's been a real treat to spend some time on their website and learn about this fantastic group and all the good work they do. The entire community of love and support for Kyra (that's you guys) sends appreciation to this organization and this amazing donor for helping this family out!! Thank you thank you for this remarkable and singular gift.  Season's Greetings to you all.  Beth                   




04/17/2012
by Elizabeth Allen
<font size="3"><font face="Times New Roman"><font color="#030303">April 16, 2012

A note from Beth....

Today marks nine weeks that Kyra has been hospitalized. She's had many ups and downs during these weeks, and the months preceding the hospitalization, but during her weeks in the hospital she has had terrible head and stomach pain, with episodes of severe nausea. Nat and Tim are exhausted, but continue to persevere and fight on and on to provide the best possible care for Kyra. A clear diagnosis and treatment plan remain elusive, as Kyra's presentation is very complex. At this point, we know this is some type of virally induced disease process. At Children's Hospital, they are planning additional GI tests to explore other possibilities for her lack of appetite and nausea. I know we all hope and pray for relief for Kyra, and all possible peace and strength for the family.

This fundraiser began just a day or two after Kyra went to the hospital. None</font> of us may have dreamed that she would still be in the hospital now, nine weeks and many tests and procedures later later. After talking with Natalie and Tim about the financial issues, I now have a better sense of their need and have increased the fundraiser goal amount to $60,000. I know many of you have wanted to help more but weren't sure exactly where things are at. If you are so moved, please continue to contribute on this site or by sending checks to me at </font></font>Beth Allen, PO Box 805, Littleton, CO 80160-0805.

Let's all pull together to help Nat and Tim as they do all they can to help Kyra get back to being her old self again! Go TEAM KYRA!!! Thank you all for your help for this beautiful child and family.

<img style="width: 309px; height: 326px" alt="" src="/admin/uploads/cms/image/Kyra%2520on%2520the%2520rock%2520wall.jpg">






04/12/2012
by Elizabeth Allen
April 12, 2012

Natalie has asked me to let you all know that Kyra handled the transition from P/SL to Children's Hospital very well, once again demonstrating what a remarkable kid she is! Natalie and Tim will have a meeting with the doctors there Friday afternoon and then will have a much better sense of the treatment plan.

Also, if anyone wants to email me about the fundraiser, feel free to do so by sending a note to kyrafundraiser@gmail.com.  I can't provide updates about Kyra--anything Natalie asks me to post about that I do so here, but if you had questions or comments about the fundraiser feel free to email me at that address.

Thank you everyone for your continued love and support to this wonderful family!

Beth




04/06/2012
by Elizabeth Allen
<font color="#000000" face="Tahoma" size="2">April 7, 2012

Hi everyone,</font>
<font face="tahoma">Natalie has asked me to give you an update on Kyra.</font> She let me know the following:
<font face="tahoma">"</font>The doctors have more specifically identified what is wrong with Kyra and it is some sort of immune complex disease. At this point, they have not been able to identify the specific disease process but many autoimmne diseases occur when immune complexes deposit into organs instead of getting disposed of. Her presentation is very autoimmune like. Our doctors have put an unbelievable amount of time and effort to connect with doctors/researchers who can assist them in Kyra's care. Kyra's case has been discussed with numerous doctors across the country. We deeply appreciate all that the doctors at P/SL and our immunologist have done for us. Unfortunately, P/SL does not have a pediatric immunology department so their ability to continue to help us has become limited. They therefore have been working on finding us a hospital to transfer to, knowing that staying local is the best option. Fortunately, they have connected with doctors at Children's who have the background we need and so Kyra will be transferred there this upcoming Monday. It will be difficult for all of us to leave here because the care we have received has been exceptional but we must go where the most knowledgable doctors are. We also appreciate that the doctors here are so willing to do whatever they needed to do to get Kyra the care she needs. I will write an update once we are settled at Children's. Thanks to everyone for all they have done for us. It takes multiple villages to help families with chronically sick children and we are so lucky to have villages near and far helping us through this."
<font face="tahoma">We do have so many people helping out. So far, between donations to this site, checks sent to me, and cash and checks given directly to Natalie and Tim, we have raised almost $35,000! I am so grateful to you all. While Natalie and Tim do have insurance, with a medical condition this serious, mysterious, and enduring, the medical bills get huge as deductibles, co-pays, specialized testing, and the like add up and up and up. Along with this, they've had to cut back on work and lose income, and hire a caretaker. I know we are in this for the long haul with them and can continue to take this financial burden off their plate so they can have at least one less stress while they focus on doing everything they can to help Kyra.</font> <font face="tahoma">If you would prefer to donate by check, you can send one to Beth Allen, PO Box 805, Littleton, CO 80160-0805. Thank you again for all you are doing to support this family--we are many villages near and far pulling together to help.

Beth</font>





04/03/2012
by Elizabeth Allen
April 3, 2012

Natalie has asked me to post a brief update. Kyra has been diagnosed with an immune complex disease and they are working through treatment options. Natalie plans on posting an update when they know more. Kyra has been in the hospital over six weeks now as they struggle to find her relief and healing. Thank you all for your love and support so very needed during this difficult time.

Beth




03/26/2012
by Elizabeth Allen
<font size="3">March 26, 2012</font>
<font size="3"> </font>
<font size="3">An update from Beth….</font>
<font size="3"> </font>
<font size="3">Natalie has asked me to post a brief update on Kyra. They have received the results of the initial complement system bloodwork, and the results were not what they hoped. Basically, Kyra tested negative, meaning no obvious therapeutic option right now. They are running more tests and the results should be back sometime this week, probably Wednesday. Kyra’s pancreatitis is still acute, and she is still in a great deal of unrelenting pain from this and from her chronic headache. She will be staying in the hospital as they continue to run tests--we all hope and pray for some real solutions for relief and healing. </font>
<font size="3"> </font>
<font size="3">Kyra, Natalie, Tim, and Tess are each doing their best with this challenging situation. While the medical team tries to problem solve and help Kyra, and Natalie and Tim provide unceasing love to her 24/7, a network of people is trying to shore the family up as best they can: Natalie’s mom is in town, they continue to have help from their excellent nanny, great friends help Tess have plenty of play and company, many people have contributed to this and related fundraisers to help with the huge financial toll, Tim and Natalie have had great support from work to give them the time they need to be there for Kyra nonstop, and there have been shoulders to cry on. Thank you all for being part of giving Natalie and Tim this support—as Natalie said in her last post, it has been life altering at this time when they need it most. </font>





03/22/2012
by Elizabeth Allen
March 22, 2012
An update from Beth…
Kyra has been in the hospital for over four weeks. Natalie and Tim were hoping for test results today, but there has been a delay. The test results should be back by Friday. I know we all hope for effective treatment options for sweet Kyra, who has been in such terrible suffering for so long now.
This is why we are doing this; trying to come together to support this family during this awful time. And come together we have. A couple of great friends of the Hilden-Smutzler family, Lois Latorra and Kelley Fisher, have been circulating this fundraiser among the Heatherwood community. They’ve been taking donations at from Heatherwood families and staff and neighborhood. The collection is still going on, but has already reached $2,965!  There was about $30 in change among the cash, and Natalie says that money will go directly to Kyra and will be spent on something VERY special! Thanks Lois, Kelley, and Heatherwood—you all rock!
In the beginning of this fundraiser, I sent an email to only 25 people announcing it. So far, we’ve had about 130 individuals and families donate through the site, send me checks, or give checks through the Heatherwood collection, with additional folks giving cash. Add to that the quilt fundraiser, the art fundraiser, and meals. That’s just so far, in one month. The success we’ve had is all due to people like Lois and Kelley helping to circulate the fundraiser information in Natalie, Tim, Tess, and Kyra’s various work, home, family, school, and neighborhood communities. In the beginning, Natalie identified some point people to circulate the fundraiser info into specific communities, and I know some of you have also thought of other ways to reach out to folks you know.  Thank you all!





03/17/2012
by Elizabeth Allen
March 17, 2012

A fundraiser update from Beth

Hi everyone,
As you know, this site is a great way to donate to Kyra’s cause and leave a note of support. Many thanks to the 65 supporters who have donated on this site! Thank you also to the folks who have also sent me checks directly.  Each of these donations are adding up to make a real difference for Natalie, Tim, Kyra, and Tess. I wanted to let you know of some other great efforts and opportunities to help.
There is a fantastic art fundraiser you can check out at
http://www.facebook.com/KyrasLoveFilledArtYou can go to the facebook page and make bids on the art.  All proceeds will go to the fund for the Hilden/Smutzler family.  There are some really wonderful paintings posted already with more to come.
Erin Russek is having great sales of the Miss Kyra quilt pattern. You can visit  http://erinrussek.typepad.com/one-piece-at-a-time/ and her Etsy shop at http://www.etsy.com/shop/erinrussek (the pattern will be sold at the Etsy shop). Again, all the proceeds from selling this beautiful pattern are going straight to the Hilden/Smutzlers.
Another thing people can do is donate to meals for Tim and Natalie through EZ entrees.  If you want to help with meals, just call the EZ entrée’s Lake wood office at 303-238-3279. Via credit card or pay pal, just let them know how much you want to donate. EZ entrees only delivers once a month and Natalie and Tim will be able to order what they want from them and keep their freezer stocked. 
Clearly, a lot of people love Kyra and this family and want to do all they can for them. Thank you everyone for all these amazing efforts!





03/15/2012
by Elizabeth Allen

An update from Natalie

3/15/12

Kyra’s illness has been a life altering experience of the worst kind. The generosity and kindness our family has received because of the illness has been a life altering experience of the best kind. It was difficult for Tim and me to accept assistance (for all sorts of reasons) but once Kyra had to be hospitalized, our attitude was “We may be stubborn but we aren’t stupid”.   This illness is bigger than us (it is like a natural disaster at the family level) and we need our family and friends to lift us out of the rubble.   And lift us out, you have.   Please know that Tim and I are writing each and every one of you elaborate thank you notes in our heads (our mothers are both lovely letter writers so the thank you notes in my head always try to mimic their graciousness). Please also know that we will pay your generosity forward once our circumstances allow.
Kyra’s team of doctors has been working very hard to more precisely narrow down the nature of her illness and have unearthed some important clues.   I had written briefly about the complement system in my last update (actually, I had cut and paste a few lines from a website because I knew nothing about the complement system prior to a few days ago – since then, I have moved on to animated cellular biology videos on YouTube). The clues continue to be in the complement system, which is part of the immune system (I believe it serves as a bridge between B and T cell functioning). As best as I can tell, the complement system (or parts of the complement system) is comprised, in part, of professional hit men. These hit men are recruited to kill <u>and</u> properly dispose of unwanted characters (viruses and bacteria) who have entered their turf, uninvited. Problems arise when the hit men don’t do the job they were paid to do. Viruses and bacteria don’t get killed like they should and/or don’t get sent to the bottom of the sea like they should. (I know there are at least a few people reading this update who are biologically trained so, after you roll your eyes at my description, grant me forgiveness for my simplistic and possibly misguided attempt at trying to understand and describe an unbelievably complicated system in about 5 sentences.)   The doctors have their eyes on a very specific complement deficiency and have sent away the blood work to test for this, as well as several other deficiencies. We should know those results within a week. If their hunch is correct (at this point it is more than a hunch because preliminary blood work has pointed them in a specific direction), then there likely will be treatment options for Kyra.   Let’s hope that all of their hard work creates a third life altering experience for our family – one that gives our sweet girl her life back. 





03/11/2012
by Elizabeth Allen
An update from Natalie...

March 11, 2012

There was a period of time when Kyra was really little (about 9 months of age until age 2 or so) where she could not fall asleep until about 11:00 pm. In our desperate attempts to Get the baby to sleep!, we stumbled across the human voice as sleep agent. The only thing that helped her fall asleep was our voices (so much for high tech sleep aid gizmos). It didn’t matter what Tim and/or I talked about, just so long as we talked…and talked…and talked. If we stopped talking too soon, her eyes would pop open and she would look at us as if to say “And? Keep going”. So continue talking we would. I joked to Tim that he should talk to Kyra about tools because that always put me to sleep. So he did. And it did. We added in “discussions” about our work, vacations, relatives, animals, kitchen appliances, whatever. In our exhausted state we would search for any words that would fill the air and put her to sleep. We seriously considered taping our talking so that we wouldn’t have to do it every night but we knew Kyra would be on to us and we would be at a loss to explain our deviant ways.
Now, Kyra is age 10 and we once again are using our voices. The medications they have tried to relieve Kyra’s headache are not working as well as hoped and some have made her feel worse. She also still is suffering from pancreatitis, which most likely is responsible for her nausea. Day after day, Kyra keeps getting dealt a one-two punch of two of the most aversive somatic experiences. She sometimes looks at us, tearful and exhausted, because she cannot find a way to escape these assaults. So we lie down next to her, and we talk, quietly and gently, about how she is going to get better and what we will do once she recovers. We also talk about family and friends. We talk about what she and Tess were like when they were babies and toddlers. And we talk about the fact that we used to have to talk a lot to get her to sleep. Almost always, this comment brings a smile to her face, which then brings a smile to our faces. We just wish our talking would bring the long-lasting relief we are all looking for.
This Tuesday, we will meet with Kyra’s doctors to discuss the next steps in her care. I’m not sure what the next steps will involve but it may be consulting with doctors at the National Institute of Health. The doctors in some of their departments specialize in very rare disorders (they are probably the closest one can come to “House” in the real world). The most likely explanation for Kyra’s constellation of symptoms is some sort of autoimmune disorder. Perhaps one that is so rare that it is not widely known. Or perhaps Kyra has an autoimmune disorder that is more common but for some reason the markers for the disease are not presenting in the typical fashion. Or, perhaps something else… A few of Kyra’s test results show some <u>potential</u> inflammatory clues, including one from her complement system (the complement system is a group of proteins that move freely through the bloodstream. The proteins work with the immune system and play a role in the development of inflammation).
Here is to hoping that some doctor somewhere can string together the clues so that the roles reverse and we can listen to Kyra talk, and talk, and talk.





03/10/2012
by Elizabeth Allen
<font size="3">March 10, 2012</font>
<font size="3">A note to everyone about the AMAZING progress of the fundraiser. </font>
<font size="3">I am overwhelmed with the outpouring of love, concern, prayers, and generosity for Natalie, Tim, Kyra, and Tess. As most of you know, in addition to this site, many people are also sending me check contributions. This past week, I received an additional $15,195.00 in checks alone!!!  Can you believe it? When I did some estimation this week, I calculated a total of about $27,000 raised between this fundraising site, the check contributions sent to me, the already brisk sales of the Miss Kyra quilt pattern, and contributions <font color="#000000">sent directly to Natalie and Tim.  That is simply incredible, especially given that this has happened in only about two weeks time! It is just further evidence of how eager we have all been to reach out to this family and how many of us hold them so dear in our hearts.</font></font>
<font size="3">OK, so does this mean that we are close to reaching our goal of giving Natalie and Tim what they need to care for Kyra now and in the future? The answer is no--we need to keep it up!! <font size="3">I think we have done a truly remarkable job raising funds this far--thanks so much to all of you!--but if we can keep the energy going that would be a wonderful and needed gift to this family. </font></font>
<font size="3">You should all know that, when I set up this site, I arbitrarily set an original goal of $30,000. Yep, I just made it up out of nowhere. Since then, some of you have had candid (and appreciated) talks with me about what a low amount that was given the extraordinary costs of health care these days, and also the fact that Kyra's need for intensive medical care may, sadly, be long term. We all hope for the best, but it is wise to plan for the long term. There are high accumulated costs from the last two years. Also, Natalie and Tim really don't know what kind of new hospital bill they are in for, but given that Kyra has been in the hospital for almost 3 weeks now already, with a myriad of really high end tests and procedures, I think we all know it will be a doozy. There is such a ripple effect with this degree of care--they have reduced income along with a range of new needs such as their wonderful and indispensible helper they hired recently and just in time to help them with this crisis. </font><font size="3">I think we all know that this current fundraiser and the associated efforts could our best opportunity to raise the funds this family will need to aggressively pay down their current significant expenses and save for the long-term expenses of Kyra's care. I know we feel grateful to have the chance to do something positive to help Kyra get the care she needs to fight her terrible illness, and it is great that Tim and Natalie are open to receiving this kind of support from us all now. My point is, let's use this chance and raise as much as we can because the current need is great and it may continue to be great in the future. </font>
<font size="3">A brief procedural note to those sending me checks. I check my PO Box once a week, make deposits once a week, and send out receipt letters once a week. So, it might take 2 or 3 weeks by the time you see that I have deposited your check and receive a letter confirming receipt. Thanks for your patience! </font>
<font size="3">And, to donors on the site and donors sending checks, thank you all for your trust!! I know most of you don't know me personally, and I appreciate your trust in me to be a faithful steward of your contributions. Please be assured that they will 100% go to Natalie and Tim. </font>
<font size="3">With gratitude to you all,</font>
<font size="3">Beth</font>





03/08/2012
by Elizabeth Allen
March 8, 2012

An update from Natalie....

With any luck, Kyra will not have to undergo any more procedures in the near future. The MRIs and GI scopes had been planned for a while and we are relieved to finally be on the other side of them. We also are relieved that the doctors went ahead with the lumbar puncture because the cerebral spinal fluid (CSF) may hold important clues. Our doctor collected two extra vials of CSF in case more samples are needed in the future (one never knows when there will be a technological advance or a new hypothesis will come to the table).   The GI scopes came back unremarkable, which we assumed would be the case (Kyra had no GI symptoms during her first episode in the summer of 2010 and her presentation just doesn’t fit well with most GI related autoimmune diseases). However, we do need to wait for the GI tissue sample results to know for sure. The nature of medicine involves a lot of “hurry up and wait” so we should know within the next several weeks whether Kyra tests positive for any of a host of infections that the Infectious Disease doctor tested for (these tests involve both blood and CSF samples and many take time to process). Another nature of medicine is having each specialty area throw down their best hypotheses to test. Of course, most will be wrong because only one (or a few) can be right. We have learned to accept that cases like Kyra’s involve a form of medical gambling and there is no way around it. We just try to find the doctors who know how to count cards.
Kyra’s pancreatitis still is such that we need to stay in the hospital for at least a few more days. Her lipase numbers actually have risen in the past few days, which is somewhat perplexing (from what we can tell, pancreatitis is often perplexing, period). Kyra also must be able to take her medications orally before we can return home. Because of the nausea (which is probably due to the pancreatitis), she hasn’t had anything to eat or drink since our arrival at the hospital and she won’t be able to give that a try until she is feeling better. So, we aren’t going anywhere anytime too soon.
Many things currently keep Tim and me up at night (including the various alarms on the machines Kyra is attached to).   The normal “What will become of my child?” and “How will she navigate the hardships of life?” are magnified when a child has a chronic illness. It is difficult to stop oneself from playing the “What if the rest of her life looks like this?” game. I am grateful that I typically do not experience free floating anxiety (my issues are more with free floating irritation) so for the most part, I can tuck away my long term worries and recognize that no one has the ability to predict the future, and if I try, especially when I am feeling tired or sad, I will focus too much on negative outcomes. 
To cope with my late night restlessness, I actively seek out stories of perseverance. For those who may be interested, I have attached an article written by Laura Hillenbrand. Hillenbrand is the author of Seabiscuit and Unbroken – both fabulous stories of spirit and determination.Hillenbrand has suffered from what gets termed Chronic Fatigue Syndrome for over 20 years. Her story, although different than Kyra’s, shares many underlying similarities. It is the best articulation I have found of what happens when a person’s “life force” is taken from them, as Kyra’s has been. Viruses and bacteria have been around the block in ways that humans can’t easily fathom and they have some very clever tricks to keep it that way (for those of you who do not know, the current hypothesis of why Kyra became so sick is that West Nile and/or H1N1 set off an underlying genetic immune vulnerability). Hillenbrand’s story, like Kyra’s, is one of Woman/Girl Against Nature, but nature of the biological kind.
http://www.cfids-cab.org/MESA/Hillenbrand.html





03/07/2012
by Elizabeth Allen
An update from Natalie....

March 7th
In the past two years, Kyra has been hospitalized twice, has undergone approximately 40 blood draws, 12 IVIG infusions, 2 brain MRIs, 1 abdominal MRI, 1 abdominal fluoroscope, 2 abdominal CT scans, and 2 EEGs. She has had an NJ tube and PICC line inserted. She has had to take a number of nasty products to aid in some of these procedures. She also has had to have several rounds of antibiotics to treat infections, including two rounds that were given via an IV. Numerous medications have been tried to alleviate pain and nausea, with limited success. Today, she will undergo GI scopes and a lumbar puncture. Prior to 2009, Kyra’s file at her pediatrician’s office was paper-thin. I think it is safe to say that Kyra is a medical mystery. We are in the land of rare diseases/disorders.
I was just reading up on some general characteristics of rare diseases and two primary ones are that they are more likely to afflict the young (check) and are usually genetic (check).  We have a higher than expected number of immune and autoimmune diseases on both sides of the family, which places our kids in a higher risk category. A research study I read a while back stated that a person is 18 times more likely to develop a Primary Immunodeficiency if there is a family history of them. The good news is that Tim and I both come from hardy farm stock. Because of this, our kids also are likely to inherit an impressive level of determinism and perseverance (otherwise known as Norwegian/German stubbornness). Our families also have good senses of humor to help offset hardships (Laura, the caption you put on the picture of your family put a smile on my face all day). Kyra has many buffers, as psychologists like to call them.
Kyra’s abdominal and brain MRIs came back “unremarkable”. I kind of wish they would use different phrasing when they report test results, something like, “Kyra’s brain and GI track look beautiful”. That way, parents could first feel proud (parents will find a way to take credit even for the look of their children’s internal organs) and then relieved… And then sad…And then scared. Every test that comes back “unremarkable” puts us closer to the end of the line in terms of what can be tested. We have known for a long time that Kyra’s case pushes up against the boundaries of current scientific knowledge. We now have an umbrella term for her (Primary Immunodeficiency) but we have yet to home in on more specific explanations for her symptom presentation. There are so many things that are scary about this, a primary one being that (some) doctors default to “Well, it must be in her head”. Fortunately, we are working with doctors who aren’t interested in that nonsense (as a psychologist, I don’t even know what that phrase means). A good test of whether a doctor is competent is his/her ability to say, “I don’t know”. Encounters with doctors who are unable/unwilling to say this should send up a red flag. We now only work with doctors who understand that absence of evidence does not mean evidence of absence. 
The history of medicine is littered with instances of doctors attributing illnesses to psychosomatic causes only to be proven wrong once the technology was in place to “see” the disease. In several of the classes I teach, students learn about Faking Good and Faking Bad as it pertains to psychological testing. By far, people are much more likely to Fake Good than Fake Bad (and, of course, most people don’t fake at all but give the most honest answers they can). This makes so much sense. It is in our best interest to put our best foot forward because that it what is most socially acceptable. We go to work/school when we don’t feel well. We smile and engage in polite conversation even when we have no desire to do so. As Beth said during one of our many conversations, it’s surprising how well people drive between the lines given the stressors/challenges they face. Anyone who knows Kyra knows that she is child very invested in putting her best foot forward. Anyone who thinks otherwise will be politely (or not so politely) ignored. We shall see what the results of the scopes and lumbar puncture bring today. Whatever the findings, Tim and I have been in this land long enough to deal with them.





03/05/2012
by Elizabeth Allen

A note from Beth...

The quilt fundraiser is off and running! Erin Russek has designed a quilt pattern called the Miss Kyra that she is selling on line. Check out her great blog at http://erinrussek.typepad.com/one-piece-at-a-time/and her Etsy shop at http://www.etsy.com/shop/erinrussek(the pattern will be sold at the Etsy shop). All the proceeds from selling this pattern will be donated to Kyra's cause! Obviously, Erin has a loving and kind heart to support Natalie, Tim, Kyra, and Tess this way, and she is also a wonderful designer, as you will see if you check out her work. Natalie is the one who is really good at the metaphors, but it strikes me that all of us together are piecing together a beautiful quilt for this family with our collective love and support, and we hope it warms and shelters them as they fight on and on. Thank you Erin, for this wonderful contribution, and again thanks to all of you who are pulling for Kyra and the family.




03/04/2012
by Elizabeth Allen
<font face="tahoma">A post from Beth...

Dear Friends,
</font>
<font face="tahoma">It has been a joy and a privilege to be part of such a large and generous group of people united in our desire to help Kyra, Natalie, Tim, and Tess as best we can through this terrible time. Your voices of love and concern have been invaluable. In addition to all the amazing support represented here on the website, I have been contacted by folks who have let me know that they have pasted the link in their Facebook page or sent it on to friends, and there are efforts in the works to have an art fundraiser, a sports gear fundraiser, and even a quilt pattern, named "Miss Kyra", to be sold with the proceeds going to the family. Isn't that remarkable?? I will post updates as those things progress. </font>
<font face="tahoma">In addition to the donations on this site, people have also been sending me checks. As of Friday, March 2nd, I have received almost $4,500 in check donations (Wow!!) and was already able to pass on $9,000 to Natalie and Tim and will be able to pass along more this week as the most recent donations clear. I will continue to keep you updated on these amounts and all the fundraiser efforts.  </font>
<font face="tahoma">I just want to thank you all for this incredible outpouring of love and support. You guys rock. </font>
<font face="tahoma">All the best, </font>
<font face="tahoma">Beth</font>





03/02/2012
by Elizabeth Allen
An update from Natalie

March 2nd
The hospital staffs Child Life Specialists walk children through their upcoming procedures (using pictures and video) to help ease their anxieties and answer their questions. The hospital psychologist also offers guided imagery techniques to help children prepare for procedures. These both represent major advances in how hospitals conceptualize the care of children (shockingly, kids are not miniature adults). Imagery can be a powerful tool to help us through challenging times (a prominent image in my mind is that of a Caribbean beach with a colorful drink in my hand, but that’s another post). Given my love of hiking, I often think of Kyra walking a forested trail. She has walked a long, hard trail over the past two years. To help me through especially difficult moments, I like to think of all of those who have, and continue to, walk alongside Kyra, with hands and hearts extended. Some, like family and close friends, are walking within arms reach of her. Others, like her friends and classmates, have gotten on the trail in the light of day to laugh and run and be kid silly, and are ready to join up again as soon as Kyra calls out. And then there are the doctors and nurses, who help walk her through the dark hours of the night. And, of course, her teachers, her tutor, our school and neighborhood community, who leave their mark well after the journey’s end.   There are those of whom Kyra can only catch a glimpse - our coworkers, extended family, and faraway friends - but their presence is reassuring. And, given the mystical nature of forests, there are those who are never seen but their presence is felt – friends of friends and those who have connected to Kyra’s story for reasons all their own. Kyra’s forest is full of companions.
Kyra basically is in a holding pattern right now. Unfortunately, her lipase numbers have risen again. She continues to experience such serious nausea that any movement is challenging. She remains very still all day. During her last episode (the summer and fall of 2010), Kyra’s first true sign of recovery was movement. She went from lying perfectly still all day long (movement of any kind was just too much) to subtle movements. These grew into all out restlessness where she wasn’t quite able to get up and walk but her body was thinking about it. Then slowly but surely, Kyra got her life back. Every day, Tim and I look and hope for restlessness. 
We most likely will keep Kyra in the hospital until she is strong enough to undergo the GI procedures and the brain MRI (these are just so much easier to do when she is an inpatient). Let’s hope that a weekend of rest will help her recovery. I will write more when we know more.
With love.





02/29/2012
by Elizabeth Allen

An update from Natalie....

February 29th

Today, I get to share a bit of good news.  Kyra has regained 5 of the 10 pounds she has lost.  It basically was impossible for Kyra to heal/improve when she was so undernourished so now we have almost cleared that first hurdle.  We discussed the possibility of bringing Kyra home to recover given that her sleep does get disrupted in the hospital. And home, especially for children, is the best place to be.  Once she was feeling a bit better (i.e., her pancreatitis was no more), then we would schedule her procedures on an outpatient basis.  The GI doctor prefers to monitor Kyra in the hospital for a few more days to see if her numbers get to a point where they can do the GI scopes.  It is easier (i.e., less stressful for Kyra's body)  to do these scopes when Kyra is in the hospital and they can just wheel her down some hallways to the surgical center.  So, Kyra will be in the hospital for at least a few more days. We are very comfortable with this decision ("Whatever is best for Kyra" is obviously our motto).  






02/28/2012
by Elizabeth Allen
<font class="Apple-style-span" face="monospace">A note from Natalie...

February 28, 2012

I have grown to love the early morning hours. The chance to sit in solitude, which affords the opportunity to reflect and prepare before the world awakens.  The chance to sit with my thoughts before the buzz and whir of decision-making begins. This morning, I have been thinking about shared loss. We all lose something when someone we know experiences a life-altering event, especially when a child is involved.  Those who are close to Kyra lose the most tangible things - her smiles, her laughter, her voice. These are the roots of relationship, of friendship. Those who are close to Tim and me have lost some of the reciprocity that normally accompanies friendship. Those who know us as a family have lost the shared experiences that gatherings and celebrations bring. Our families have lost opportunities to have our girls visit and watch them grow. And everyone reading this experiences loss in some way, whether it be that our loss reconnects them to losses in their own lives or the communal sense of loss that occurs when a member of a community can no longer participate in its daily happenings.  And, of course, what we have lost pales in comparison to what Kyra has lost.  There is no true consolation for that, at least not now. I am sorry and sad for what we all have lost. Those who know me well know that I will not sit in this sadness for long. Sitting in sadness is an expected and required part of this process (for all of us) and this post honors that necessity.</font>
<font class="Apple-style-span" face="monospace">
</font>
<font class="Apple-style-span" face="monospace">Kyra continues to have a rough time of it. Her primary nemesis of the moment is inescapable nausea, accompanied by its crony, vomiting. The usual suspects - headache, achiness, temperature dysregulation - also are in full force. Thank goodness this child still sleeps well so that she can escape these villains, if only for the night. The doctors and nurses are working very hard to try to find her some relief, for which we are deeply appreciative.  They have been able to find meds that bring her pain down a few notches and are working to develop a longer term plan for pain management.  Kyra's pancreas still is too inflamed to perform any GI procedures and she is too sick at the moment to undergo a brain MRI.  She continues to rest and receive impressive love and care from her nurses and doctors (if P/SL is an accurate representation of the hospitalist model of inpatient care, I say the whole country should follow!). There is a chance that we will be able to take Kyra home so that she can recover enough to undergo her next round of procedures.  The assessment of "sleeping well" I mentioned above is relative to "hospital sleep" which involves alarms, blood draws, and even x-rays at all hours of the night.  The body has a heck of a time healing if it cannot properly rest so we may go home (with the PICC line) and have a home health nurse help us with her care.  We should know more about this by the end of the day.  I know that Kyra really wants to go home but she has not made that request since the first night we arrived.  Kyra is a very bright and insightful being and understands that everyone is trying to help her.  I also believe she is so desperate for relief that she is willing to "sacrifice" herself in hopes that it will bring about a greater "good". I will post another update as soon as we know anything new.</font>
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<font class="Apple-style-span" face="monospace">Words cannot express....:-)</font>
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<font class="Apple-style-span" face="monospace">Love,</font>
<font class="Apple-style-span" face="monospace">Natalie, Tim, Kyra and Tess
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</font>








02/25/2012
by Elizabeth Allen
An update from the Hilden-Smutzlers...

Hello to all,
As I first tried to compose this update, I could not find a way to escape a cliched expression of gratitude.  At first this was bothersome. As someone who loves words, relying on"expressions which have been overused to the point of losing original meaning or effect" felt fraudulent.  As I thought more about it, I realized that cliches may be the most appropriate type of expression as they reveal a shared human experience.  Anyone who has received the outpouring of support that follows a challenging life event deeply relates to the phrase "Words cannot begin to describe how grateful we are". We recognize that it simultaneously rings hollow and true but it must be expressed none the less.  It is like viewing a masterpiece and searching for words, any words, to describe what ultimately is a visceral experience. What therefore gets expressed is something like, "It's so beautiful", which falls utterly short of what we yearn to convey.  However, no matter how sophisticated the sculpting of the words, the fundamental message is always "It's so beautiful".  This phrase exists because it is accessible by all. So, I'm going to resist the urge to configure a sophisticated way to say "Words cannot begin to describe how grateful we are" and just say it.  I will add in a "Thank you from the bottom of our hearts" for good measure.

So, Kyra has had an incredibly challenging week.  The doctors obviously wanted to address her nutritional needs first (which included trying to understand why she had been vomiting and losing so much weight).  Therefore, they initially went after GI explanations - Kyra had an abdominal ultrasound, fluoroscope, and CT scan.  The good news is that they were all unremarkable.  They primarily did these procedures to determine whether Kyra had any obstructions in her GI system (and, of course, they are always concerned about tumors, etc).  Because there are no obstructions, they went ahead with the PICC line (for nutrition) and also inserted a NG tube to help Kyra's body prepare for the GI scopes she will have this upcoming week.  She had to undergo general anesthesia so the last few days have been ones of recovery. Kyra will rest over the weekend and let the nutrients do their thing. They also are trying various methods to decrease her headache pain.  It's awfully hard for the body to heal when it is in constant pain. She also has pancreatitis so they want to keep an eye on that before proceeding with any more GI procedures.  In addition, she most likely will undergo a brain MRI and possibly a spinal tap to rule out various viral or bacterial culprits  (the doctors are very conservative about this procedure and will only do it if they and we believe it to be truly worthwhile).  

We cannot say enough good things about Presbyterian/St Lukes.  Kyra has received superb care and they have treated her with such gentleness.  It is hard to explain the relief that comes with competent care (as many of you know, we basically have seen the whole spectrum of competency with regard to doctors/nurses).  Kyra will stay in the hospital at least through early next week. We look forward to bringing home a stronger (and hopefully healthier) child.  

With love and gratitude,
Natalie, Tim, Kyra and Tess





10/29/2012
by Elizabeth Allen

<font size="3"><font face="Calibri">Hi everyone, </font></font>

<font size="3" face="Calibri"> </font>

<font size="3"><font face="Calibri">Kyra is back in the hospital for steroid and IVIG treatments--hopefully will head home by Halloween. See below for an amazing post by Natalie and keep going to the bottom for a youtube link to some fantastic pictures! Love and thanks to you all!</font></font>

<font size="3" face="Calibri"> </font>

<font size="3"><font face="Calibri">Beth</font></font>

<font size="3" face="Calibri"> </font>

<font size="3" face="Calibri"> </font>

<font size="3"><font face="Calibri">An update from Natalie...Three weeks ago, Tim and I were treated to the loveliest of days.  Our wonderful friend, Suzanne Phillips, brought to fruition a fundraiser for Kyra at Flatirons golf course.  Tim and I had just come off the heels of Kyra’s three-day hospital stay and this event soothed our weary souls in a way that only family and friends can.  Over 160 people, including 88 golfers, came together to enjoy a glorious fall day (we escaped sleet and snow by a handful of hours) that included golf, a sip-and-draw event for kids, a silent auction, and lunch. On the course, Tim and I teamed up with our friends Mike Ashworth (who flew in from TX ) and Ed Duell (whose family just moved to the Boulder area). My dad joined in for moral support and some good laughs.  Tim and Mike were able to relive some glory days on the course (translation: days before children, jobs, and midlife) while I was able to whack the ball and yell out some expletives (only a few).  For Ed, it was yet another engineering puzzle and by the time we reached the “Win a car if you get a hole-in-one!” challenge, he laid that ball impressively close to the green. Once the event wrapped up, Tim, Mike and I were able to get back out on the course with Suzanne’s husband, Rick, who handedly put all of us to shame. We fundamentally had the course to ourselves and it was a perfect end to a perfect day.</font></font>

<font size="3" face="Calibri"> </font>

<font size="3"><font face="Calibri">We were greeted at each hole by signs from businesses and friends, offering words of encouragement and support. Many of the signs came from the Boulder Community Hospital family and their affiliates (BCH acute care and inpatient employees, Boulder Orthopedics, BCSM employees, and many local physicians) and others from organizations such as Imagine! and There with Care, both of which offer impressive services and support to so many families in need in our community. It was especially nice to see so many of Kyra’s friends at the sip-and-draw and to watch kids frolic in the sunshine throughout the day (thanks to Sam Bennett for getting the word out to Kyra’s friends and using some Girl Scout funds for the event).  A special thank you to Dr. Pam Mattson and her husband for attending the event with their two girls (it probably is no coincidence that our team of doctors is comprised mostly of women with children close in age to our own).  </font></font>

<font size="3" face="Calibri"> </font>

<font size="3"><font face="Calibri">A remarkable $23,000 dollars was raised, and because of the unbelievable generosity of Doug Cook (the golf pro -- and a good friend), and the caterers (A Spice of Life), almost all of that money came to us.  Every time we think people could not possibly be more generous, they are.  The outpouring of support we have received produces a complex set of emotional experiences, awe being at the forefront.   It is not hyperbolic to say that all of those who have offered their love, support (and money) have saved our family.   It is a given that gestures of generosity will be sent back out into our community, once our circumstances allow. </font></font>

<font size="3" face="Calibri"> </font>

<font size="3"><font face="Calibri">A special thanks to Suzanne’s partners in crime, Melanie Johnson and Ann McNamara. We know you put in more sweat (hopefully not tears) than you will admit to.  Denise Knudson for her fabulous photographs,  both on the course (see the youtube link  below for a slide show of the event)  and those donated to the auction (I hear they generated at least a few bidding wars). Tina Pittman Wagers and her husband Ken, for donating the use of their beautiful mountain home over spring break.  Andy and Sue Pruitt (and Gebhart BMW) for making the hole-in-one challenge happen. Gebhart also donated the use of a BMW for the spring break vacation.  Suzanne’s mom, Jill, and sister, Stephanie, for making the sip-and-draw a fabulous success (I trust a moderate amount of sipping was encouraged but cannot guarantee it).  And Saba, for her help with all of the accounting.  A thank you to every single contribution of time and energy that went into this event –if I’ve left someone out, please know that it is an honest oversight!  As has been the case since Beth began this fundraising campaign months ago, Tim and I often are ignorant as to who is doing what behind the scenes. Beth and Suzanne have “shielded” us from much of the fundraising efforts and outcomes until we have the time to truly absorb all of the kindness.  Because of this, Tim and I are able to focus our efforts on the hours and hours of research that are required to get Kyra the best care possible care  (not that I still don’t feel guilty about the lack of thank you cards we have written but I have been told by many to get over it). </font></font>

<font size="3" face="Calibri"> </font>

<font size="3"><font face="Calibri">Suzanne, we love you and cannot thank you enough for giving us a day out on the town that we will never forget.  How lucky we are to be in your orbit.    </font></font>

<font size="3" face="Calibri"> </font>

<font size="3" face="Calibri">http://www.youtube.com/watch?v=dd6cReDcWKM</font>






10/12/2012
by Elizabeth Allen
An update from Natalie...

The very first entry I made on this website pertained to trying to find the right words to express gratitude.  I want the words to matter.  The ability to generate meaningful words becomes almost impossible when weighed down by enormous stressors. So, I am going to steal some instead.  Christopher Hitchens was one of my favorite writers. Shortly before his death of esophageal cancer, he wrote the following passage:

“Another element of my memoir — the stupendous importance of love, friendship andsolidarity — has been made immensely more vivid to me by recent experience. I can’t hope to convey the full effect of the embraces and avowals, but I can perhaps offer a crumb of counsel. If there is anybody known to you who might benefit from a letter or a visit, do not on any account postpone the writing or the making of it. The difference made will almost certainly be more than you have calculated.” 

I can only imagine what he might have written had it been one of his children, rather than he, who had to endure a terrible illness.

Kyra is home from the hospital and definitely is doing better than when she went in.  Nausea and vomiting have been her unwanted, relentless companions since February 11th.  Anyone who has experienced these knows that it is close to impossible to function until they subside.  Nausea, especially, takes prisoner of the whole body.  She also has lost a great deal of strength in the last several weeks and is struggling to participate in even the most basic of movements.  Her IgG numbers are still low so we are working through whether to begin IVIG treatments again.  We are waiting on some tests results from Mayo to help guide that decision. We are hoping (I have come to hate that word) that she will regain strength now that she is not vomiting so much.  She has, however, been in this hell for 14 months and is exhausted.  We have her on the best medication regimen we know of given her symptoms, especially the ones potentially associated with the Postural Orthostatic Tachycardia Syndrome.  She began a beta-blocker this week and also is taking a steroid that helps the body retain sodium.  Her GI doctor is trying a medication that directly targets the nausea and vomiting.  She still is miserable but the vomiting has improved – she now hovers around six or seven times a day, as compared to the fifteen or so that prompted the hospitalization.  We continue to seek out information and resources but for the time being, we are primarily watching and waiting to see if these medications, and a slow-but-sure reconditioning plan, are able to take hold. Words just fail to describe how agonizing it is to repeatedly endure the hurry up and wait process. They just fail. 






10/04/2012
by Elizabeth Allen
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Hi Everyone,

I'm sorry to say that Kyra has been re-admitted to P/SL. She has had nausea and daily, repeated vomiting for months now, but it got worse recently, probably due to some infections she has picked up. So she was admitted for rehydration and observation. The doctors continue to work on the Postural Orthostatic Tachycardia Syndrome aspects of Kyra's presentation. Most likely, she will begin on a beta blocker when she is well enough. She is in good hands at P/SL with those committed and fantastic doctors and nurses.

I know we all have Kyra, Natalie, Tim, and Tess in our hearts as they continue to fight and fight. Kyra is a "little warrior" as some of you have said. The whole family have been warriors, along with the combat stress(!), and I think Natalie and Tim should have honorary medical degrees by now as well.

We all send our love and support to the family. Many of you will be able to attend the incredible event put together by Suzanne Phillips. Questions? Want to give? Email soozmoose@gmail.com. Or give on this site. On this site we have reached 100 donors!! How cool--and as you know from other postings this is just part of the outpouring of support. They sure need it.

Thanks and good wishes to you all,
Beth

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09/08/2012
by Elizabeth Allen
Exiciting announcement from Suzanne Phillips!

SAVE THE DATE!!!!
Save the date of Sunday, October 7th………WHY???

Because we are having a Golf Tournament Fundraiser and Silent Auction for the Smutzler/Hilden Family! Due to ongoing medical costs for Kyra’s care, it’s time to raise some money and have fun doing it!
The Golf Tournament will start with an 8:00 shotgun on Sunday, October 7th at Flatirons Golf Course in Boulder. Format will be 4 person scramble. Entry fee is $100.00/person and covers 18 holes of golf, golf cart and unlimited range balls. Lunch (provided) and silent auction to follow the tournament. Play for prizes, play for fun, and most of all……… play for a REALLY GREAT CAUSE!
If you are interested in registering for the tournament, or have items you would like to donate for the silent auction (baskets with a theme, condo get away for a weekend, sporting even tickets or anything!) please contact Suzanne Phillips at soozmoose@gmail.com OR call Rick Phillips at 720-273-1238.
Natalie and Tim are looking forward to participating in the tournament, and getting out for a fun filled fall golf event. Although beware, as rumor has it that Natalie has been known to destroy a few clubs in her day (just ask Tim as he is missing two drivers from his bag!).
Stay tuned for more information – HOPE YOU CAN JOIN US!!!!!!





08/23/2012
by Elizabeth Allen
<font color="#000000">August 23, 2012

Hi everyone,

Thank you so much for your continued donations and fundraising efforts! As you can tell from the updates, it has been enormously helpful for the family to do what they need for Kyra, including renting an RV and trekking to Seattle! Currently, they are waiting to hear back from several clinics that have seen cases like Kyra's. The waitlists are quite long at each facility so if Kyra cannot get in soon, they are hoping to consult with one or more doctors to see if they can get a treatment plan started locally.

Natalie sent me some pictures to post--they are below with her captions.

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We had many visitors this past month, which has been great. Helps keep things as normal as possible.
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<img width="500" height="375" alt="" src="/admin/uploads/cms/summer visitors.jpg">


Well, as normal as my family gets.


<img width="500" height="375" alt="" src="/admin/uploads/cms/silly visitors.jpg">

Chris Hawkey, a graduate student in the psychology department, put together a fabulous bake sale for Kyra. It looks as if fun was had by all. We were so touched by this gesture. They were able to raise over $1,000!


<img width="400" height="536" alt="" src="/admin/uploads/cms/CafeKyra1.jpg">

<img width="400" height="536" alt="" src="/admin/uploads/cms/CafeKyra2.jpg">

<img width="500" height="375" alt="" src="/admin/uploads/cms/CafeKyra3.jpg">

<img width="400" height="669" alt="" src="/admin/uploads/cms/CafeKyra4.jpg">




08/15/2012
by Elizabeth Allen

August 15, 2012

An update from Natalie...

Well, the lags between posts are getting longer. This mostly is due to the fact that we have been on this journey a long time and weariness has set in. In my last post, I hesitated writing that the leading diagnostic contender was Wegener’s granulomatosis because 1) we didn’t yet have confirmation via CT scans and 2) it’s a terrible disease and I’m sure at least some people reading this blog looked it up and experienced the same sinking feeling we did. However, we, along with the doctors, were quite confident that Wegener’s it was. It wasn’t. Until recently, a certain marker (an elevated PR3) was assumed to mean Wegener’s. However, the immunologists at Seattle Children’s have now seen four cases in which it has not been, Kyra’s being one of them. They are not sure what to make of it yet. They assume, like many of Kyra’s doctors before them, that she has some type of autoimmune process that keeps rearing its head in a smattering of tests but is difficult to identify.

The doctor we met with was wonderful. She spent about five hours with us across two clinic visits and patiently answered our long list of questions and treated Kyra with kindness, which quickly suppressed any protective behaviors that Tim and I have developed through this process. She also told us of a rheumatologist out east who regularly sees children like Kyra. This is the piece we needed. With each new doctor, we are looking for him/her to say, "I see this, or things like it, with regularity". We think we have finally found at least two places that regularly see children like Kyra. We need a place that commonly hears the story "Our child was healthy and happy and then one day…" We are in the process of learning more about what Children’s Hospital of Philadelphia and Mayo in Rochester, MN can offer. Both of these hospitals see children who come in with a lot of autonomic dysregulation, which can be associated with a lot of pain (check) as well as GI symptoms such as nausea and vomiting (check). Many of these kids have some sort of viral trigger (check). Because children are quite resilient and their systems can often be retrained more readily than adults, these types of programs have had impressive success rehabilitating kids like Kyra with intensive physical therapy and occupational therapy. They also help children develop a strong set of coping skills to manage lingering symptoms and the justifiable fear of becoming sick again. We are more than happy to embrace a model that plays to children’s strengths and doesn’t overutilize medications (most likely, the only meds that would be used would be ones that help with autonomic regulation). The doctor we met with in Seattle has already been in contact with Philadelphia and I have been in contact with Mayo. Both have very long wait lists but do triage. If both are a good fit, we will go to the one that can see Kyra the soonest.

We just learned of these programs in the past few weeks so have been spending long hours learning about them as well as the research associated with the types of syndromes they treat (Kyra has met criteria for Postural Orthostatic Tachycardia Syndrome in the past and this most likely is contributing to many of her difficulties). It has been deeply reassuring to read that many of these children recover, often fairly rapidly (within one or two months) once they begin rehab. It also has been deeply comforting to finally read stories of families like ours, who have been on arduous journeys but not only have survived but thrived. We will do everything we can to fold ourselves into that type of narrative. Because of all of the financial and social support we have received from you, we have been able to maintain a laser-like focus on getting Kyra the care she needs. Here is to the protagonists!






08/01/2012
by Elizabeth Allen
August 1, 2012

An update from Natalie...

Our initial appointment with an immunologist at Seattle Children's could not have gone better. She was thorough, kind, and funny. Kyra's case will be discussed amongst the immunologists today to determine the next steps of care. They are taking an even closer look ay Kyra's B cells (these cells provide crucial lines of defense against all sorts of pathogens) and plan to include her in a genetic data base study. Further workups need to be conducted (which most likely will include imaging of Kyra's sinuses and lungs) but the current leading diagnostic contender is Wegener's Granulomatosis. Hopefully, we will have a much better sense of things by the end of this week and then can begin to work through treatment options. I have attached a photo of where we are staying. It is only a few blocks away from the hospital so they provide special accommodations to families. It is a much needed oasis.

<img width="500" height="375" alt="" src="/admin/uploads/cms/oasis.JPG">





07/30/2012
by Elizabeth Allen

<font face="Calibri"><font size="3">Alright, the great folks at youcaring figured out my problem with uploading pictures and here we go! Here are a series of pictures about the trip. The captions are from Natalie. Enjoy!

Opening Kyra's birthday gifts and then it's off we go!

<img width="262" height="350" alt="" src="/admin/uploads/cms/opening presents 1(1).jpg">

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<font size="3">Edna as co-pilot. Who knew she knew how to play "shotgun"?

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<font size="3">Tess and Tiana snuggled up in the RV.

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Edna and Tess
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<font size="3">Edna proving to be high maintenance for Uncle Dirk.

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<font size="3">Edna snuck up on Grandpa Lee upon our arrival and took a good year off his life. They have since made up. </font>


<img width="262" height="350" alt="" src="/admin/uploads/cms/edna grandpa lee 6.JPG">

<font size="3">Grandpa Lee LOVES putting Dirk to work. He is about to go after a wasp nest at the peak of the house and stopped by Kyra's window on the way up. I think the protective gear was enough to scare them away. </font>


<img width="262" height="350" alt="" src="/admin/uploads/cms/dirk vs wasp 7.JPG">

<font size="3">Now that is a bedful of trouble.

<img width="350" height="262" alt="" src="/admin/uploads/cms/bedful 8.JPG">

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<font size="3">Tess hamming it up for Kyra. She definitely is the best medicine.

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<font size="3">Last pic: my mom had told kyra she would keep the Christmas tree up until she could visit. It was lighted up when we arrived.

<img width="262" height="350" alt="" src="/admin/uploads/cms/christmas tree 10.JPG"></font>












07/30/2012
by Elizabeth Allen
July 30, 2012

Hi all,
Natalie sent me this update below to post along with several pictures. Unfortunately, I'm having trouble posting photos right now, but wanted to the the update up. I'll keep working on it, and hopefully will have the pictures up soon! Thanks everyone.
Beth

An update from Natalie....

In our own way, we snuck in a summer vacation. My brother, Dirk, our nanny, Tiana, the girls and I arrived (via RV) at my parents' place in Colville, WA last Sunday. It was a long, bumpy ride and proved to be very challenging for Kyra but like so many other aversive experiences that have been laid before her, she handled it with grace. We treated it as an adventure and definitely had some laughs along the way - I refer you to the trip photos, especially those that include our stuffed traveling companion, Edna. We left on Kyra's birthday and our friend Carla dropped off a bear of a present right before we left. How could we not bring her along? My brother will deny it, but I know he misses her now that he is back in ND. 
We (Tim, the girls and I) leave for Seattle tomorrow. Our appointment with an immunologist at Seattle Children's takes place on Tuesday so we will have a bit of time to settle in before the next round of medical appointments, tests, procedures, etc. begin. I will send Beth an update when we learn anything new.
Thank you so much for your continued support.





07/19/2012
by Elizabeth Allen

<font face="Calibri">An update from Natalie...

Hi to all,</font>
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<font face="Calibri">I apologize for the delay in getting something posted. It has been a very challenging summer. Kyra remains unbelievably sick and we are in the process of trying to get her to a hospital that can provide comprehensive care. This is a huge undertaking because she will need to be seen by numerous specialists and that type of coordination takes time, especially when the facility is not local. We are hoping that Seattle provides the goodness of fit we are looking for but are still waiting to hear. A number of people at our immunologist's clinic have been working very hard on Kyra's behalf and we very much appreciate how much work has gone into the process of providing her with the next steps of care. Kyra's recent bloodwork showed numerous immunodeficiencies and also suggests that there may be some type of vascular autoimmune process at play. This has been such a heartbreaking experience and Tim and I are doing our best to keep all of the wheels of life turning. We have fabulous support from family and friends and a number of people are ready to help at a moment's notice if/when we get the green light to go to Seattle. We have an RV parked in the front of our house and will load up when we have somewhere to go:) There are so many people that have helped us get through this terrible ordeal. In this post,I have to thank my mom especially. My mom has a spirit that I wish everyone could experience firsthand. She is kind, funny, and generous (and just quirky enough to keep it interesting). One of the most important things I learned in her presence is flexibility of thought and a willingness to change plans rapidly when needed. No (excessive) complaining, no trying to figure out why the world doesn't bend to your needs, no nothing. And you might as well inject some humor while you are at it. If I pass along these characteristics to my girls, I will have succeeded as a parent. Our mothers' voices stay in our heads and hearts forever. I am glad that I was lucky enough to get a mother whose voice sings.</font><font size="3"><font face="Calibri"></font></font>

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06/14/2012
by Elizabeth Allen
June 13, 2012

An update from Natalie....

Hello to all!
I’m sorry I have not posted for so long as I know a number of people check this site with some frequency because it’s the only way they are able to get information about Kyra. We have been home for about a month now, and on some fronts Kyra is faring better. The very good news is that her lipase numbers (which are the primary indicator of pancreatitis) have been in the normal range for three weeks now. She still has some abdominal pain that we are trying to figure out but it is such a relief to see that pancreas settle down. We also are seeing more smiles and laughter and she has a bit more strength when talking. However, she still is one very sick girl. Part of the reason I have not posted in a while (besides trying to get our lives back on track after 3 months in the hospital) is that we are actively working on getting Kyra to Seattle to see a team of immunologists who specialize in Primary Immunodeficiencies. We should know the specifics of that plan within the next week. Right now, we are working under the assumption that our best bet is to travel out there so that the doctors can actually see Kyra and become more familiar with her symptom presentation, etc. Kyra’s condition will be chronic (hopefully not this severe!) so we need to connect with doctors who see children with Primary Immunodeficiences day in and day out. If we get the green light from them (and insurance), we will begin working on travel logistics. I will do my best to keep everyone informed, even if it is through brief updates or through Beth. Speaking of Beth, I wish every person could have a friend like her. She called me up in February and said, “Please let us help you”. With reluctance (but with deep gratitude), we finally said yes. Who would know that within a week we would begin a three-month journey in the hospital, worried that our child may not survive.  I cannot imagine undergoing that experience without all that has come through, and from, this website. All of you lifted us through those long, hard days and we could not have asked for anyone better to represent our family than Beth and her family. We love them deeply.





05/30/2012
by Elizabeth Allen
Fundraiser update 5/30/2012
Dear TEAM KYRA,
WE DID IT!!! We have reached, and SURPASSED, our $60,000 goal!! There aren’t enough exclamation points to express how wonderful this accomplishment is.  I am so grateful to and proud of you all for coming together like this for Kyra and her family in their time of dire need. As you guys know from Natalie’s post on May 1st, the money you have donated has enabled them to pay off things like debt from prior medical bills and associated costs, pay for this last hospitalization that lasted almost three months (!), and save for the long medical journey ahead.
I just want to highlight a few of the ways that you all have contributed…
  • From this website and checks sent right to my PO Box, you guys have raised over $40,000 dollars!!! This was from family, friends, neighbors, co-workers—folks from all over gave and gave! Included in this are generous donations from Natalie’s coworkers from the University of Colorado Boulder. I don’t have a total for the University because I didn’t always know who was a co-worker, but from what I do know it is in the thousands of dollars!!
IN ADDITION…
  • Heatherwood Elementary raised $3,600 in cash and checks. Go Heatherwood kids and families!!! You guys are wonderful! Hats off to Lois Latorra, Kelley Fisher and Samantha Bennett for working so hard on this and making this collection happen.
  • Heatherwood ALSO raised another $700 in their Pedal for Kyra event!! What a fantastic school and community!
  • Tim’s hometown of Milan, MN had a big fundraiser event and raised $7,182!! This is on top of all the checks I received from folks in and around Milan even before that fundraiser day, and money sent straight to Natalie and Tim. You folks dug deep again and again and did a wonderful job!
  • From Tim’s workplace, folks donated vacation time to be converted to cash and contributed March Madness pool money. The Employee Assistance Program also contributed. All in all, $7,950 was raised from Tim’s work!! Amazing.
  • Thanks very much to Suzanne Phillips and Melanie Johnson who have been absolutely instrumental in the fundraising efforts at Tim’s work. They have also been researching medical cost-saving options and initiating other fundraiser events such as the Art Fundraiser <font color="#800080">http://www.facebook.com/KyrasLoveFilledArt</font> which includes art painted and donated by Melanie herself! Other artists contributing to the Art Auction are Jill Musser and Ryan Johnson. Thank you!
  • Makenzie had her 11th birthday party and did a rare and special thing—asking for birthday present money to go to her friend Kyra instead of getting presents. What a kind and generous kid—Makenzie you rock!! That earned over $400 for Kyra!
  • The Boulder County Sheriff’s Office gave $653 to Kyra plus a $100 American Girl giftcard for Tess! What a caring and generous thing to do for these deserving kids.
  • Boom yogurt shop contributed a portion of their sales one day to Kyra. Delicious yogurt and great people making a fantastic gift!
  • Erin Russek’s beautiful Miss Kyra quilt pattern (http://www.etsy.com/shop/erinrussek) raised $730 for the family. Many thanks to Erin for her lovely creative gift. She also got a connection with Natalie’s mom, who sent Erin some wonderful vintage quilting magazines. Thanks Lois!
  • Other neighbors, family, and friends have sent checks here and there right to the family totaling hundreds of dollars!
WOW. This is just incredible, isn’t it? A round of applause for you all!!! In addition to all this financial support, there have been so many other ways people have given deeply and lovingly to this family. Many prayers, kind words, and shoulders to cry on. Support from Tim and Natalie’s workplace for them to focus energy on family. Time with the family and outings with Tess. Beautiful cards and art. Nourishing meals. I’m sure many offers of wine (and Maker’s Mark)! From the pain and suffering there has emerged this community of love and support, which is beautiful and sustaining. It has been a sacred experience for me and I know we are all so grateful to Natalie and Tim for letting us share in their journey and struggle in this way. I will keep this site going so we can continue our community of support and follow updates on Kyra. Please continue to feel free to email me at kyrafundraiser@gmail.com if you have anything you want me to post.
With gratitude and admiration to you all,
Beth
P.S. For fun, here are a couple of pictures. The first is Grandma Lois squirting kids at Heather Heatherwood, a one mile fun run in Kyra’s neighborhood. The next is Tim, Tess, and Grandma Lois.

<img width="400" height="533" alt="" src="/admin/uploads/cms/Grandma Lois(1).jpg">

<img width="400" height="533" alt="" src="/admin/uploads/cms/Tim, Tess, and Grandma Lois.JPG">





05/28/2012
by Elizabeth Allen
Tess, Grandpa Lee, and Tim in front of Boom yogurt shop in Boulder. They contributed a portion of their sales one day to Kyra...and the yogurt is terrific!

<img width="400" height="533" alt="" src="/admin/uploads/cms/Boom yogurt.JPG">





05/28/2012
by Elizabeth Allen
The Boulder County Sheriff's department raised $653 to give to Kyra, and also gave Tess a $100 gift card to spend at American Girl! Way to go! The pictures below are: (1) A visit from Boulder County Sheriff's department, along with several of Kyra's teachers and staff from Heatherwood Elementary, (2) a special cake, courtesy of the Sheriff's department, (3) a copy of the "check" for Kyra, and (4) Tess with her new American Girl doll, courtesy of the Sheriff's department. What a great occasion and treat for Natalie, Tim, Kyra and Tess! Thank you Boulder County Sheriff's Department and Heatherwood!!

<img width="400" height="300" alt="" src="/admin/uploads/cms/BC sheriff dept.JPG">

<img width="400" height="533" alt="" src="/admin/uploads/cms/the cake.JPG">



<img width="400" height="300" alt="" src="/admin/uploads/cms/the check.JPG">

<img width="400" height="533" alt="" src="/admin/uploads/cms/Tess and AG doll.JPG">




05/20/2012
by Elizabeth Allen

May 20, 2012

An update from Natalie....


We are home. After 88 days, 2 hospitals, 12 or so imaging studies, 3 procedures that required general anesthesia, an unbelievable bout with pancreatitis, and a crazy journey through pain medication land, we are finally home. I wish that I could say that we are home because Kyra is better but I cannot, at least not in any way that resembles normalcy. Kyra is home because her pancreatitis is finally at a place where the doctors felt comfortable sending her home. The satisfaction that comes with being home seeps rather than surges. We still have a very sick child and can do very little to alleviate her suffering. Kyra uses a NJ tube for feeds, is bedridden, and now has difficulty walking (this is due to the onset of pain in her legs, ankles, and feet that began about a month ago). Even with all of these obstacles, Kyra has been able to smile and laugh more in the past several days than we have seen in months. This is partly due to the fact that her nausea is finally a smidge better but mostly due to the fact Tess is a natural comedian and has taken it upon herself to become Kyra’s court jester. So far, it looks as if the queen is pleased. Even the best hospitals are still hospitals, with constant reminders of illness. We all needed to be home so that we could be surrounded by constant reminders of home.

Even though our time in the hospital was challenging (to say the least) we gained many pieces of valuable information about Kyra’s illness. When we entered the hospital, we had no idea Kyra had pancreatitis. The pancreatitis may be a completely separate entity from her underlying illness, but that is unlikely. More likely, the pancreatitis developed because Kyra’s underlying disease process began to attack an organ, as often occurs with autoimmune diseases. We also learned that she showed deficiencies in her complement system. We are in the process of retesting this system and will know the results of those tests this upcoming week. If the results again come back remarkable, we have further evidence Kyra may have an autoimmune disease as circulating immune complexes often are involved in these diseases. Finally, this past week we learned that a subclass of Kyra’s immunoglobulins are low. Her IgG numbers had been in the normal range for quite a while but now are back into a clinical range.

On a potentially related note, Kyra shows many of the symptoms of Chronic Fatigue Syndrome (don’t even get me started on how this illness has been construed by doctors and the public alike). A recent study in Norway found that many individuals who met criteria for Chronic Fatigue Syndrome responded favorably to a cancer drug and the authors of that study are speculating that at least some Chronic Fatigue patients may actually have an autoimmune disease. It is still too early to tell where this research will go but when I read the study, I just kept feeling like it was Kyra’s story (one of the authors commented on how many of the Chronic Fatigue patients were as sick as their last stage cancer patients).

Our next step will be to pursue hospitals that are known for their pediatric immunology departments (this type of hospital does not exist in Colorado). Ideally, the hospital has deep ties with a university so that there is the interconnectedness that one hopes for between basic research and medical practice. There are several hospitals that most likely can help advance our understanding of what has happened to Kyra (and hopefully can offer some treatment options). We have our eye on a hospital in Seattle and our P/SL hospitalists did a phenomenal job of laying the groundwork for that connection. We will follow up with them this week to see if they can provide assistance via telemedicine. If they prefer that we come to them, we will catch the earliest plane possible once Kyra is a bit stronger.

It would be misleading to say that we are full of hope as we have been on this deranged carnival ride way for too long for that. However, we are cautiously optimistic that we are getting closer to an answer for our kind and gentle girl. We thank all of the doctors who are wrapping their heads around Kyra’s illness and all of you who are wrapping your arms around our family.






05/07/2012
by Elizabeth Allen

On Saturday, one of Kyra's friends had her 11th b-day party. She invited all of the 5th graders and they had a great time playing games outdoors. Makenzie asked that the kids bring donations for Kyra rather than presents. They raised $400! Way to go Makenzie!! And way to go 5th graders!!

<img width="400" height="300" alt="" src="/admin/uploads/cms/Makenzie party(1).jpg">






05/03/2012
by Elizabeth Allen
Hi everyone, 

Natalie sent me two pictures of a diorama that the Heatherwood 5th graders made as a part of a fundraiser for the school. The two families who bid on the diorama (the Hills and the Rosenbooms)then donated it to Kyra (and raised some funds for Heatherwood in the process). Yet another generous gesture that brought tears to Natalie and Tim's eyes. Kyra's figure is on the far left and was lovingly made by her grandma.  It is waiting for her when she returns home from the hospital.

<img width="400" height="300" alt="" src="/admin/uploads/cms/diorama all(1).jpg">

<img width="400" height="300" alt="" src="/admin/uploads/cms/diorama whole.JPG">






05/01/2012
by Elizabeth Allen
May 1, 2012

An update from Natalie....

Hello to all! It is nice to put words to “paper” again. Writing is usually therapeutic for me but one has to have energy to write and until recently, that just was not possible. We have been in the hospital for 11 weeks now and it has taken quite a physical and emotional toll on us. Every day, we deeply absorb the unbelievable generous support we have received from so many and that by far has been what has allowed us to survive this terrible process relatively intact.
Bear with me as this entry is quite long but I wanted to try to explain at least some of the journey we have been on the past several months (really, the past several years). 
<u>The process</u>
Under the right conditions, a lot of hard work and a little bit of luck can go a long way.    For 8 years, this premise worked impressively well for our family (as it does for many families who are born in the right places at the right times). We were humming along, leading hectic but happy lives. And then the luck ran out. Our 8 year-old daughter drew a very short straw, which began a very long medical quest. With a lot of hard work we would find the answer. But we failed to fully consider the luck part.   When one initially gets thrown into the medical system, especially when the diagnosis is elusive, there is an unbelievable amount of guesswork and luck of the draw at play. Our first few encounters with medical specialists were deeply discouraging. One was so pathetic it was comical. It’s as if we were drawing nothing but nonwinning numbers in the medical specialist lottery.
Fortunately, we always had one doctor who kept us moving forward – first our pediatrician, then our integrative medicine doctor, and finally our immunologist. Doctors invested in Kyra’s care, helping us maintain hope along the way. But Kyra’s case is so complex that it requires multiple doctors who can work through the diagnostic process and bring her back to health. Prior to Kyra’s hospitalization, we were trying, in a piecemeal fashion, to build a team of doctors but this is very challenging to do on an outpatient basis. For one, highly competent doctors are busy doctors so getting on their schedule often takes time, even when one’s primary doctor is helping to move the process along. Second, solving (or at least better understanding) a case like Kyra’s demands a lot from doctors. Doctors, being people, respond to this challenge in a variety of ways, not all of them rational or helpful (I refer you to the article written by Laura Hillenbrand that I posted a while back for a sampling of nonsensical medical thinking).  We needed doctors who were up for the challenge. 
There also are many elements of luck with regard to what types of disease processes receive proper research and medical attention at any given time. Many things have to fall into place for rare diseases to be better understood – researchers need to receive funding to study the disease process, technologies have to be developed to assess and diagnose, and treatments need to be developed. All of these things, and more (including having at least one influential person who can help raise funds and draw attention to the disease), need to occur before breakthroughs are possible. And breakthroughs are rare. Usually the diagnostic and treatment process is more like a slow slog, with many dead ends along the way. Because Kyra’s condition is rare, we are at the mercy of the current state of knowledge of the medical and research systems. We are just hoping that we get lucky and some group of researchers somewhere makes headway on the type of immunological dysfunction that Kyra has fallen prey to. Or, one of the many doctors we have interacted with will go to a conference, or talk with a colleague, and will learn of other individuals who have a similar story to Kyra’s. Kyra’s case may be rare, but across a population (a city, a country, a continent), there will be others like her. We just need to find them. (One of the children who frequently has to be admitted to P/SL has a condition that has afflicted only 39 people worldwide.)
Tim and I have to keep pressing forward because one never knows when luck will change. As luck would have it, we landed at Presbyterian/St. Luke’s 11 weeks ago and just happened to land a fabulous admitting hospitalist. We then were introduced to more fabulous hospitalists (and specialists) and, together, they have worked very hard to provide the best care possible for Kyra. (In April, we went to Children’s for 10 days for very specific diagnostic purposes but once those were complete, we opted to return to P/SL for the remainder of Kyra’s hospitalization. Having full confidence and trust in a team of medical providers is crucial, and after a two and a half year journey, we finally have that piece in place at P/SL.) So we finally have a team of doctors who are all working on drawing a longer straw for Kyra. Like children who play games of chance, we are going to keep playing until we get a straw that let’s her win the game (with a very flexible definition of “win”).
Kyra still does not have a specific diagnosis that explains the chronic nature of her illnesses. However, headway has been on made on several fronts. Below I have described what we currently know about her medical condition(s). 
<u>The medical status</u>
<u>Gastrointestinal piece </u>
As Beth mentioned in her latest update, our GI doctor found two pancreatic stones when he performed an ERCP (Endoscopic Retrograde Cholangiopancreatography) last Tuesday. Fortunately, it just so happens that the ERCP, which he was performing for another purpose, is the procedure they use to flush stones so he was able to clear them that day (I was going to make a “one bird, two stones” joke and then realized it doesn’t really work but I’m keeping the phrase in anyway). Kyra’s still has pancreatitis but her lipase numbers definitely are trending downward. She also is receiving some relief from the pain medication, which was not happening at all earlier. Chances are, the stones were creating a level of pain that no known pain reliever could touch. She still is throwing up every day and feels ridiculously nauseous but these symptoms should diminish as the pancreatitis gets better. Kyra is receiving feeds through an NJ (Nasojejunal) tube and if that goes well, they will transition to an NG (nasogastric) tube and then we hopefully can reintroduce food the old fashioned way. Kyra has not had anything to eat since February 10th, when she began 10 days of violent vomiting. She actually lost her appetite back in November, which is when low grade pancreatitis probably developed (loss of appetite is a classic symptom of pancreatitis).   Things look very promising on the GI front. There is nothing to suggest that Kyra will not make a full recovery from a GI standpoint. The only issue that may arise is chronic pancreatitis (which is no small issue) but several hospitals are making remarkable headway in treating this disease. 
<u>Immunology</u>
In early April, some test results assessing Kyra’s complement system came back remarkable (unusual). Her classical and alternative pathways showed deficiencies and she also showed evidence of circulating immune complexes. The tricky part is that immune complexes can build up in the blood for all sorts of reasons. They can be caused by viruses, medications, IVIG treatments, autoimmune diseases, etc., so the immunology doctors are not quite sure what to make of them yet. Immune complexes often are indicative of autoimmune diseases but Kyra does not show the markers for any of the well-known autoimmune disorders (lupus, rheumatoid arthritis, etc).   I believe there are over 80 known autoimmune diseases so it may be that she has one of these (and the markers just haven’t shown up yet) or she has an autoimmune disease process that has yet to be formally recognized. Kyra’s symptom picture (unbelievable achiness, headache, temperature dysregulation, malaise, and cognitive impairment, cyclical patterning) is very consistent with an autoimmune presentation. The immunologists want to retest Kyra when she is feeling a bit better to determine whether the same pattern of test results emerges under different conditions. We are continuing to gather as much information as we can on complement deficiencies and various complement researchers have been consulted about Kyra’s case. We believe that this piece of the puzzle may ultimately lead to a more thorough explanation of Kyra’s illness but we have to wait and see.
<u>The thank you</u>
We are fortunate to have good health insurance but as anyone who knows anyone with prolonged and/or serious medical conditions knows, the costs associated with premiums, deductibles, and copays are rising. Moreover, hospitalization costs are not fully covered, for reasons that no one can fully explain. One look at an Explanation of Benefits form illustrates how convoluted the medical billing system has become. We also have to plan for Kyra’s future care and all that may entail. When this fundraiser began, we thought that the contributions would reach a few thousand dollars and for that we would have been so grateful. We have been absolutely stunned (and brought to tears) every time we visit the website or receive an update about funds that have been raised. You have rescued our family when we needed rescuing the most. We wanted to let you know where those funds have gone and where they will go in the future.
· You have paid for our food and lodging since being at the hospital. Tess is not allowed to stay overnight at the hospital so we hold family slumber parties at a nearby hotel when she comes down to visit.
· You allowed us to pay off all debt that had accrued because of Kyra’s condition.
· You are allowing us to pay the medical bills associated with her current hospitalization.
· You are allowing us to create a savings fund to pay for future costs associated with her condition (examples include tutoring that won’t be covered through the school – Kyra missed all but one week of 5th grade; Physical Therapy; Occupational Therapy; Acupuncture; etc.)
· You are allowing Tim and I to continue to work by helping us pay for childcare costs. We <u>wan</u>t to continue working as I love my job (Hi Lew <img alt="" src="http://www.youcaring.com/admin/includes/fckeditor/editor/images/smiley/msn/regular_smile.gif">) and Tim loves his job (Hi Andy and Jason <img alt="" src="http://www.youcaring.com/admin/includes/fckeditor/editor/images/smiley/msn/regular_smile.gif">) and we <u>need</u> to continue working so that we have two layers of insurance protection for Kyra. We are hopeful that Kyra may qualify for some Medicaid waivers as well but there are waitlists for those.
There are so many intangibles associated with your generosity as well. Because of your financial and emotional support, we are as sane as we can be given our circumstances. Most importantly, Grandma Lois, Tiana, and Tess do not have to panhandle on one of our neighborhood street corners or run a perpetual lemonade stand (which of course would really be a front for a more seedy, but more lucrative, business. Grandma Lois would just have to modify her brownie recipe).   So, you have kept our youngest, and her caretakers, on the right side of the law as well <img alt="" src="http://www.youcaring.com/admin/includes/fckeditor/editor/images/smiley/msn/teeth_smile.gif">





04/26/2012
by Elizabeth Allen
April 26, 2012

Hi everyone,

Natalie let me know that the doctors found and flushed two jagged stones in Kyra's pancreas on Tuesday!! This should help explain why the pancreatitis has been so chronic and unbelievably painful. More details soon from Natalie--I know we are all hopeful that this brings sweet Kyra some relief.

Also, here are some great pictures from Heatherwood. This week is Walk and Roll week at the school, which promotes walking or riding bikes to school. Each day has a theme. Wednesday's theme was Pedal for Kyra! The kids had a jar with a rainbow on it to signify a pot of gold at the end of the rainbow. Kids then brought coins and bills to put in. (Parents gave permission to post these pics in website.) It looks wonderful and I hope you enjoy them. A big round of applause again to Heatherwood and the tremendous support for Kyra!!


<img width="400" height="299" alt="" src="/admin/uploads/cms/Tess at Pedal for Kyra.JPG">

<img width="400" height="299" alt="" src="/admin/uploads/cms/Three friends at Pedal for Kyra.JPG">

<img width="400" height="299" alt="" src="/admin/uploads/cms/Two friends at Pedal for Kyra.JPG">

<img width="400" height="536" alt="" src="/admin/uploads/cms/Pedal for Kyra jar.JPG">

<img width="400" height="536" alt="" src="/admin/uploads/cms/One friend at Pedal for Kyra.JPG">

<img width="400" height="299" alt="" src="/admin/uploads/cms/great socks at Pedal for Kyra.JPG">




04/24/2012
by Elizabeth Allen
Hi all, 

Here's a couple of great pictures to share with everyone. The first one are wonderful friends Ava, Amanda, and Lissa, who made this AWESOME poster for Kyra! It is so cool! The second one is of Tess and her nanny, Tiana. Tiana has been such a great support in these 10 weeks of Kyra's hospitalization. As Tim says, "Tiana truly rescued us -- we are so lucky she entered our lives."  All of these folks, and all of you, are so appreciated for your love and support. Thank you and enjoy the pictures. 

Beth

<img width="0" height="0" alt="" src="/admin/uploads/cms/tessandtiana.jpg">
<img width="400" height="533" alt="" src="/admin/uploads/cms/kyraposter.jpg">

<img width="0" height="0" alt="" src="/admin/uploads/cms/image/tessandtiana.jpg"><img width="400" height="533" alt="" src="/admin/uploads/cms/image/tessandtiana.jpg">







04/21/2012
by Elizabeth Allen
Hi Team Kyra! 

Thanks to EVERYONE for the incredible response to the fundraiser!! I think around 200 individuals or families have contributed, and we have together raised $36,000 for Natalie, Tim, Kyra, and Tess! I think you all deserve a round of applause!  I am so grateful to you all. It has been so wonderful to connect with you all to create this much needed net of support. I wanted to post a picture of beautiful Kyra and invite you all to send me any pictures you would like me to post. It can be a picture of Kyra, or a picture you want to share with Kyra, a clip...whatever you think might be nice to post to connect with the family and with each other here. You can send me text, images, links, etc to <font color="#ff6600">kyrafundraiser@gmail.com</font>. Thank you all again and again, from me and from our dear Tim, Natalie, Kyra and Tess. You guys are the best!

Most sincerely,
Beth

<img width="136" height="182" alt="" src="/admin/uploads/cms/image/Kyra%2520on%2520the%2520rock%2520wall.jpg">




04/17/2012
by Elizabeth Allen
<font size="3"><font face="Times New Roman"><font color="#030303">April 16, 2012

A note from Beth....

Today marks nine weeks that Kyra has been hospitalized. She's had many ups and downs during these weeks, and the months preceding the hospitalization, but during her weeks in the hospital she has had terrible head and stomach pain, with episodes of severe nausea. Nat and Tim are exhausted, but continue to persevere and fight on and on to provide the best possible care for Kyra. A clear diagnosis and treatment plan remain elusive, as Kyra's presentation is very complex. At this point, we know this is some type of virally induced disease process. At Children's Hospital, they are planning additional GI tests to explore other possibilities for her lack of appetite and nausea. I know we all hope and pray for relief for Kyra, and all possible peace and strength for the family.

This fundraiser began just a day or two after Kyra went to the hospital. None</font> of us may have dreamed that she would still be in the hospital now, nine weeks and many tests and procedures later later. After talking with Natalie and Tim about the financial issues, I now have a better sense of their need and have increased the fundraiser goal amount to $60,000. I know many of you have wanted to help more but weren't sure exactly where things are at. If you are so moved, please continue to contribute on this site or by sending checks to me at </font></font>Beth Allen, PO Box 805, Littleton, CO 80160-0805.

Let's all pull together to help Nat and Tim as they do all they can to help Kyra get back to being her old self again! Go TEAM KYRA!!! Thank you all for your help for this beautiful child and family.

Beth



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