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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....
Februray 24, 2013A "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 email@example.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
February 3, 2012An 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.
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).
<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"><font face="Calibri">Beth</font></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"><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"><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"><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"><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">http://www.youtube.com/watch?v=dd6cReDcWKM</font>
“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.
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 firstname.lastname@example.org. 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
August 15, 2012An 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!
<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"></font></font>
<font size="3">Edna as co-pilot. Who knew she knew how to play "shotgun"?<img width="350" height="262" alt="" src="/admin/uploads/cms/edna copilot 2.JPG"></font>
<font size="3">Tess and Tiana snuggled up in the RV.<img width="350" height="262" alt="" src="/admin/uploads/cms/tess tiana 3.JPG">Edna and Tess<img width="262" height="350" alt="" src="/admin/uploads/cms/edna tess 4.JPG"></font>
<font size="3">Edna proving to be high maintenance for Uncle Dirk.<img width="262" height="350" alt="" src="/admin/uploads/cms/high maintenance 5.JPG"></font>
<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"></font>
<font size="3">Tess hamming it up for Kyra. She definitely is the best medicine.<img width="262" height="350" alt="" src="/admin/uploads/cms/tess 9.JPG"></font>
<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>
<font face="Calibri">An update from Natalie...Hi to all,</font><font size="3"><font face="Calibri"></font></font>
<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>
May 20, 2012An 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.
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">
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