Blog #16: Thank You, Thank You, Thank You and What is Next

Wow.  For starters, you people are amazing!  I don't know the exact amount we all raised for TGen but I think it is near $16,500!  I haven't even finished my final thank you notes because we had donations coming in the day of the race!  Helping others is such a beautiful gift, something I hope you can all feel very proud that you participated in, whether you donated, said some prayers, or just thought about some of these amazing families that TGen serves.  We are so thankful for your generosity!  This is the first pic that was taken right after I finished (note Dave had already been done for an hour :)

I'm not sure many more half-marathons are in my future.  It was a good time and pretty exciting but I did get a bum right knee at about mile 7 and it oddly hurt worse and nearly froze if I tried to walk on it or stop..which meant I just had to keep running.  We had about 10 runners on our team and they all did an amazing job and it was so sweet of them to sacrifice so much of themselves for this cause.  We did a horrible job taking pics because people just roll in at such different times that it was impossible to get us all together, but I am hoping at some point to piecemeal the pics we do have together to share.

There were a couple of moving moments I experienced during the race .  One was when I got to the top of the hill at about mile 9 (on McDowell road in the midst of the Papago Mountains).  The view of the city from the top that morning was beautiful.  I actually stopped and took a couple of pics.  At that point on my ipod was a song that contained the following lyrics, "Greater things have yet to come, and greater things are still to be done in this city!  Greater things have yet to come, and greater things are still to be done in this city!"  I listened to it at least a couple of times for inspiration, but perhaps not-so coincidentally I couldn't help but keep thinking about my hope, my dream for premier medical care in Phoenix.

I know I'm going to pour out the cheese on this next paragraph, but it is honestly how strongly I feel about this.  I'm a fourth generation Arizonan and there are so few of us that I can't help but be filled with pride when I think about my family making its way to this state before it was even a state (and long before AC).  I even had a great-grandmother that had to swim across the Rio Grande in order to get in because Ellis Island was full, and then as a young teenage girl make her way to Arizona.  I know how desolate that trek is with I-10 in existence, can't imagine what that was like before.  I can't help but think about those people that built the CAP (the Central Arizona Project) long before we were one of the fastest growing cities in the country.  This has inevitably made us the "water-envy" of the west (granted not exactly the water-envy of the world, but it's good for the west!) and where would we be without it??  I have definitely drank the ASU President Michael Crow kool-aid and believe that we Phoenicians can take over the world!

Perhaps "the world" is a bit of an extreme, but can Phoenix be a premier center for 21st century medical care, now that would be my dream!  I was on the Board of Regents some 13ish years ago, and let me tell you that if someone had told me then that the UA would have a medical school in downtown Phoenix, I might have thought he/she moderately insane, and look at it now.  It resides in the old Phoenix Union buildings that my grandfather actually built...how cool is that!  And that ASU would take over downtown!  Even more surprising, it has essentially been that many years that we have been sequencing any person's genes, let alone thousands in any given year.  And that it would be offered for free to families desperately in search of a diagnoses for their sick child! Who would have thought!  I continue to be impressed by every article I read coming out about Barrows, about TGen...and throwing out that buzz word of all buzz words, I tell you Phoenix is creating some amazing synergies around our health!

So what are we going to do about it?  Some of you may gawk at my commentary and say we need an ivy league school in our backyard to make this real, or perhaps an endless supply of government money.  But in this day and age, all I have to say is that all you really need are the right people.  I already wrote about how surprised I was at the facilities in both NY and at the National Institute of Health...it really opened my eyes to how if we put the focus on the right people then facilities may not quite mirror the Taj Mahal, but we will have premier care.  There is a lot of talk in the media about access to health care, and don't get me wrong access is important, but it's only been 3 short years since we realized that access can only get you so far. When we REALLY needed medical care like we never had before, it wasn't about access, it was about finding the RIGHT, premier doctor to help us..and we went through a lot of ones that couldn't help us to get there.  It doesn't have to be this way.  We can build up organizations that truly strive for personalized, research-based care....greater things are yet to come!!

Our hope is obviously to continue to support efforts in gene therapy because at this point this is our best hope.  We hope that you will help us make that investment in Phoenix and anywhere there is promising research going on.  I don't know if this means at some point we will set up a separate foundation, or perhaps directly support causes that already benefit the many worthy non-profits that already exist.  We are still brainstorming the best approach.  I do know that we turned down numerous donors that came forward the last month that are insisting on us setting up an organization...only time (and some serious research) will tell.  In the mean time, we are happy to keep you updated on Emilia's progress every now and again and we are soooo thankful for your interest in her endeavors.  Your thoughts and prayers have been so comforting over the last few years.  Thanks for reading/running with us these last 6 months!! - Love, Mary

Blog #15: The Finish Line

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Emilia and Ethan on Christmas Eve, aren't they so cute together :)

This particular blog has taken me quite a while to pen.  Although I always have planned to write on the topic of what it was like when I decided it was time to stop working, I couldn't quite organize my thoughts and memories..honestly some of it is a blur.  I kept starting and stopping, starting and stopping...just couldn't seem to get the discussion right.  I hated the idea of dragging you all along with a bunch of rhetoric. Strangely, I think the material has finally come to me while I was in the midst of cleaning the bathroom...strange, funny, but strange.

Since Emilia was a repeat c-section and I apparently lack all hormones that enable birth to proceed naturally, we were able to pick her delivery date that last week prior to her due date.  Things at work were quite a mess.  The previous six-months our entire organization had been in the midst of one of those "wonderful" externally-led reorganization processes..whew, was that a mouth full!  By the end of it, the department that I managed had been re-orged to a different organization.  This was such a stressful process.  I have to admit to losing my nerves at least a couple of times, and I don't think knowing that I was pregnant with a child that was having some difficulties helped throughout that process.  This meant that the department that I managed was no longer under a man that I whole-heartily trusted and respected (and had worked for 8 years).  I was only planning on coming back as part-time, so this also meant that this new boss was having to replace me with a new manager.  This meant there were some very nervous and uncomfortable employees, people that I have wonderful friendships with and who I really care about.  The worst part was probably that with all of the re-org madness, there was a lot of work that had been left wayside and I knew that if I wanted to leave the office in even a remotely respectable condition, I needed a few extra days before I delivered.  I tried to convince Dave to go with a date later and later.

Cooler minds prevailed (plus the schedule worked out that we could only deliver on the first business day after Thanksgiving).  Work was going to have to be a mess..so hopefully I could make a pretty quick recovery and help clean things up.  I have already written about Emilia's birth and the additional level of sensitivity it brought to my thoughts surrounding my future.  Well, after being home about six-weeks, things took a pretty drastic turn for the worst.  Emilia essentially quit eating.  She would nurse for maybe a minute or two to subdue her hunger I assume, but then she would scream bloody-murder like I had never heard before and refuse to eat any more.  We tried everything.  There came a point that I was just numb to it.  I know I have a couple of friends that have experienced something similar, and they have affirmed this reaction that I had.  Having your child refuse to eat, knowing quite well they cannot stay alive without eating, can pretty much drive you crazy.

As it came time for me to go back to work, at first the only person that could stay with Emilia was Dave.  And yes, he has a job so he was taking a day or two here and there to make this all work because he knew how stressed I was about how messy things were at work.  Let's add to this web that a new manager had been hired and everyone in the department had a new job in the works.  At one point my mom came in a couple of days to try to feed her while I worked for a half-day.  I knew things were getting bad because there were two-days in a row that I came home and my mother was teary-eyed.  She said it was just too stressful because Emilia would not eat anything all day and there had to be something wrong.  The last day we attempted to make a work day work out Dave decided to stay home.  By noon-ish he called me and said I'm driving the baby down to the office so you can feed her, she had not eaten all day.  I recall thinking he was crazy to think that I was going to be able to feed her, but I went along with it.  Of course she wouldn't eat...so we scheduled a pediatrician appointment.  The next day we went in and of course she had lost quite a bit of weight.  For any of you that have had that happen, I am so sorry.  They sic the wolves on you and you can tell the sound in their (the doctor's) voice has a heavy dose of fear.  Off to the gastroenterology doctor (GI doctor) we went.

Emilia and I went to see the GI doctor while the boys were at school and Dave was at work.  They weigted her in, it was bad.  We waited in the room for about 10 mins for the doctor to join us (a resident had already came in and asked us questions).  The doctor walked into the room and here is how the discussion progressed: Dr. "How quickly can you get to the emergency room?"  Me. "Uhh, what?  Um, well I have 2 other kids at school right now and I need to make arrangements, but I guess pretty quickly, how quickly do I need to get there?"  Dr.  "You have time to go home and pack your stuff.  You are going to be there for quite a while."  Me. "Um, what is wrong?  How long?"  Dr. "A couple weeks.  I'm going to go call the emergency room right now and make sure they let you right through to a room"  (It was winter and he said it would be horrible in the emergency room and she couldn't afford being exposed to it.)  I'm sure there was more commentary, but I was mostly in shock and didn't ask much, just did as I was told.  We were there (in the hospital) for about two-weeks.

I recall calling my new boss the second day or so we were in the hospital just explaining the circumstances and that I will probably be out a few days.  I called again in another two days..and again.  I eventually just said I didn't know when I could make it back in.  At this time I was also in the middle of a year of Tempe Leadership classes that I really enjoyed.  I was sitting on a couple of boards/committees for non-profits.  I recall leaving the hospital for the first time during that long stay somewhere around day 10.  Just thinking about what that felt like makes my stomach turn.  We really are very easily institutionalized beings.  I had grown so use to my 5 ft by 5 ft space and feeling like a zombie that those few hours of freedom to go hang with the boys and take them to Mass felt so awkward.  I'm pretty sure I cried through most of the Mass.  Driving home (I mean back to the hospital) that night I recall thinking to myself that everything is going to have to cease.  This is going to take all of what I have to offer.  From that point forward, I didn't even correspond with all of these baskets I had been juggling (work, organizations, Tempe Leadership), I just disappeared.  Every few weeks someone would check in and make sure all was okay and I feel horrible but I rarely responded...I simply had tunnel vision.  I was inspired to go even deeper in my research when I was put in touch with a woman that had two children with a rare neurological disorder that was essentially solved by a simple medication once they discovered the genetic error.  She was in research mode for a number of years and said she eventually solved it (and found the right doctor to get to) about 37 pages or so into a particular research paper.  I thought to myself about all of the research I had only been reading at a surface level.  My "home-work" just kept growing and growing.

The funny thing is that the world just keeps moving forward, as it should.  My old department moved back under my old boss.  They hired new employees and a new manager.  My former co-workers and friends started new jobs.  They changed the direction of the department.  My Tempe Leadership class completed an amazing group project, a community garden at the Escalante Center in Tempe. Etc, Etc.  I eventually went back in for a couple of weeks on a part-time basis to help them train some new employees.  Nobody ever mentioned anything about how messy things were.  And then I turned in my badge and parking pass (the premier downtown parking pass was really hard to let go of :).  Not to be dramatic, but it was a bit surreal walking to that parking garage for the last time...I really did love the people in that building.

In the midst of the madness, one day my boss (the one I worked for nearly all my career at APS) and I grabbed some coffee to discuss how I might be able to help them transition things.  He said something pretty profound that day that at the time I am not certain I appreciated.  When he asked how things were going and  I explained the madness he said the following, "Man, I'm just really glad it is you and Dave.  I'm just really glad it is you guys."  Uhhh, what...I thought to myself, among other thoughts.  I eventually internalized what he meant and I do know it is a really nice complement.  He is right.  We have been blessed with the skills, the resources, the initiative, and the energy to solve this.  These things don't just happen on accident, I don't care what science says.  Everything that has happened in my life has prepared me for this new journey.

So, will I work again?  Hum, probably.  I have to admit to being really interested in the business side of hospitals...well, because they are a mess.  I once told a nurse that I would be happy to develop an algorithm for them that could limit the number of nurse changes a patient had to endure during a stay (we once had 22 different nurses when there was only a possibility to have 26 different nurses during that stay)..wowsers, what a mess.  I don't know that it would ever be full-time again, that sure was complicated.  People always ask if it is harder to be at home with the kids instead of work.  I always respond that there is nothing harder than doing both.  In retrospect, working with no kids was easy.  Staying at home with the kids is not that difficult (painful sometimes, but manageable, and sometimes rewarding), but working with kids full-time was exhausting, often rewarding but it is not for the faint of heart.

We are just 4 days out from the race.  We have both completed our playlists for the run...ah, the important things!  Thank you all so much for your support these last few months.  For those that are not aware, our team actually raised almost $16,000 for TGen.  The entire TGen race family raised over $54,000..which is apparently the most for any charity affiliated with the race this year.  We are so thankful to have such generous friends and family.  You guys are really the amazing ones!  We will check in on race day and let you know how it went once we recover :)

Blog #14: Divine Intervention

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While we were at the NIH (National Institute of Health) a few months ago, we had one day that we were able to sneak off campus and spend the afternoon in DC.  We took the subway to the nearest exit to the National Mall and walked through a few museums, and per Emilia's request, we played in the grass for a good hour or so.  As we walked aimlessly as it got dark, as I previously noted, we literally ran into the presidential motorcade.  We stood around at least 30 minutes as the crowds of people that were not permitted to cross the street while the motorcade was en route grew bigger.  After a while, I noticed a man staring rather intently at Emilia.  Granted this happens often.  Dave says the guy's name was Ken, I can't quite remember but lets call him Ken.  He was dressed in a very nice suit.  I kept looking at him and then at Dave to see if Dave was going to say something.  Sometimes when this (prolonged staring) happens, Dave is much braver than I and acknowledges the person and asks he/she how they are doing.  After a while, Dave looked at Ken and asked him how he was doing.

Ken was startled and you could tell a little embarrassed...he had honestly been looking at Emilia with a very perplexing face for at least a few minutes.  He fumbled his words for a few minutes and said something about his granddaughter being about the same age, this conversation going on while we were walking among the crowded street.  At one point, he just stopped and grabbed one of our arms and said the following (I'm paraphrasing the discussion from memory), "There is something about your daughter."  To which Dave replied, "Yeah, we know."  Ken: "No, there is something very special about her."  Dave:  "Yeah, we know."  Ken: "No, I mean something really special about her, I can  just tell.  I don't know what it is but she is going to do something amazing."  Dave:  "No, we get it, we know she is very special."  Ken:  "Can I pray over your daughter?"  Dave:  "Right here?"  Ken:  "Yes, right here, right now."  Dave:  "Of course."

So, in the midst of one of the busiest sidewalks this man proceeds to pray over Emilia for at least 5 minutes right in the middle of the sidewalk (for the record, 5 minutes is an eternity on a busy street in DC).  Emilia was such a pro about it, just sat there in the stroller listening intently.  I think that was the case because she really is such a pro at being prayed over.  This experience actually reminded me how we found out so early that Emilia has pulmonary hypertension, and I mentioned previously that I would tell that story..so here goes.

Some of the first people we told that Emilia was having lung problems in utero that could be very problematic were some very good friends of ours, the Welps.  We told them for the same reason I think people instinctively start doing the sign of  the cross in traumatic situations...we knew we needed a miracle.  We knew they and their small children would pray incessantly.  A few weeks after notifying them, Christian Welp suggested he wanted to arrange a "prayer meeting".  He had planned to invite a group of people who he knew to be charismatic prayer warriors.  This was something new to both of us and maybe even a bit out of our comfort zone, but we knew Christian knew what he was doing.  These people were amazing..so considerate, so prayerful, so hopeful and determined to have a profound impact.  And, it worked!  Each time we went back for an ultrasound to see if the fluid in the pleural of her lungs had waned and each time it was getting better.  Given the statistics going against this happening, it truly was a miracle.

 When Emilia was about 15 months old, Christian decided it was time for another prayer meeting.  She had started having these week-long episodes of throw-up and diarrhea and each time it was getting more and more difficult to keep her hydrated.  This "meeting" had a number of the same warriors but also included the priest from our parish (Father Charlie), a good friend who was actually the priest at our wedding.  That morning, Emilia started one of her episodes but this was worse than anything we had seen before.  Everything we put through her g-tube was coming back up, she kept nothing done.  Strangely, she was in good spirits and as long as you didn't feed her she was a happy little girl.  Again, the prayer meeting was amazing.  Emilia slept the best she had ever slept that night.  I recall that she didn't even wake up until after 10am the next day...which was unheard of, and to be honest with you, a little unsettling.  We thought for certain this meant that she would have a good day and hold down her food.

Boy were we wrong.  She had a horrible day, throwing up everything we put in.  We considered the emergency room but she was so happy and in good spirits that we decided to wait it out.  It lasted another day or so when I finally looked over at her sitting up and realized she was struggling to hold herself up...it was time for the emergency room.  While we waited in the emergency center for a room upstairs, I started inquiring about who our presiding physician would be.  I was REALLY hoping it would be the same one we had a year prior.  He was so considerate and thoughtful (for instance he stayed a good 2 hours after his shift the evening we were admitted to make sure everything went okay).  Obviously, all of the people told me the chances were slim because there are a lot of physicians.  You can imagine my surprise, joy, etc the next day during morning rounds when I looked out our room and saw this doctor.  I nearly tackled him, inquiring whether he would be taking care of Emilia.  He was definitely confused about my enthusiasm because he didn't remember us, but I trusted this man to listen to us.  We spent a few days to treat her dehydration but before he discharged us he stated the following, "I just feel so bad that you still don't have any solid answers after the last year, what else can I do, is there any test that hasn't been done?  I stated that we had not done an echo.  A doctor back in Cleveland recommended we see a cardiologist but we just hadn't gotten around to it.  I told him I didn't think she had any symptoms to justify it, but I would love to just know all is okay with her heart.  He said, "consider it done, I will order it now and you can leave once you have the results."

I think both, we and he, were surprised what they found.  She had pulmonary hypertension, which is something you generally find because people are symptomatic and quite progressed in the disease.  Finding this out as early as we did has given us the ability to seek out the right care and treatment, treatments that we are hoping have a preventative nature to them.  I thought about why we had such a horrible week coming out of that prayer meeting and I really started to rationalize this by saying to myself that this pulmonary hypertension must be an important data point, we must need to know this before it became obvious for a reason.  Now here we are nearly 2 years later and it is definitely what we consider the most pressing issue  and I think the second most important data point we  have (second only to her genetic error).  The doctors in New York confirmed that she may require gene therapy on her lungs someday, which has solidified for us our need to support advancement in this technology because the ability to do what she would need doesn't actually exist yet...wow.  There are times I get distracted by other issues she is having, but I am reminded of what data came out of that prayer meeting and each time I put my focus back on her heart and lungs.  We are so thankful for people's willingness to pray over our child, both perfect strangers and dear, dear friends.