Another Ellie Update

So yesterday was National Dog Day. We celebrated by taking Ellie to an internal medicine specialist.

What? You didn't know there were specialist vets?  Ones who require a referral to even see?  Well, there are.  And we went to one.  Because, in case you haven't picked up on this yet, we are crazy dog people who will do nearly anything for our sweet girl.

When I last updated you on Ellie I thought the end was eminent.  We were giving her fluids and trying the kidney medication, but really I viewed that as a way to put a couple of weeks between what was obviously needed and the start of kindergarten.  Even that was a hard decision and came with lots of caveats of "if she stops eating again then it's time" or "if she can't get up to ask to go out it's time"... all these lines in the sand of quality of life I was not willing to ignore just to put some time between the first day of school and the loss of our sweet girl.  Basically, we weren't willing to let her suffer, but if we could humanely buy some time we would.

So as each day went by it was a constant reevaluating... how was she?  Was she eating?  Was she getting up and moving?  Does it need to be today??  But each day that passed was a day at least the same and sometimes a little better than the day before.  She was eating a good amount, but no dog food.  We were (are) making her meals.  She was drinking a lot, asking to go out, wanted to be with us and would follow us from room to room, barking when people came in... she was doing okay.  Not great mind you, but okay.

And so here we are entering into the third week of school.  She is doing... better.  Definitely better than her darkest days four weeks ago.  But her arthritis is still an issue and her lack of interest in food is causing constant stress for us with the worry that any minute she will stop eating all together.  So our vet recommended a specialist.  Actually, they recommended him back when we found out about the kidneys and the cushings, but at that time it felt like wasted money trying to stop the inevitable.  It still feels a little like that, but if we are giving her all of these medications and trying to have her feel better, we figure we might as well pour our money* into the smartest doc in town.

Yesterday we met him.  I absolutely adore him.  It cost only slightly more than a regular vet visit.  He was very aware of the cost of everything without making me feel guilty.  He didn't want to rerun blood work yet because he said it didn't really matter what it said, based on her clinical signs he would suggest the same treatment either way.  I appreciated that.  He supported everything our other vet has done so far, which was reassuring, but also added two new steps to the process that he thinks will help with her arthritis and her eating, our two major concerns.  He said her kidneys are bad but not awful, and that while she will most likely need the fluids for the rest of her life, we can hopefully get her healthy enough to only need them every other day or maybe a couple of times a week.  Right now we are doing it twice a day, so that was exciting.

He was also realistic.  He said that if these things don't work, then we need to begin to accept that medicine only takes us so far, and that she might just be at the end of the days.  I appreciated that too.  That he sees the line where it's okay to accept there is nothing more we can do.

We started the two new medicines yesterday and we already see a difference.  She ate dog food this morning for breakfast.  DOG FOOD!  She is moving better too.  So we have hope.  Not a lot, but some.

What it all comes down to is we love our girl.  And we are willing to do these things if the make her comfortable and happy until the end of her days.  She really is a very good dog.

*If you are curious, we do have limits on the spending.  I wish we didn't have to, but we do.  Everything we are doing is actually pretty reasonably priced, all things considered. And the cost of giving her the monthly medications she is currently on is not bad.  I am happy I got a new job that gives us a little more freedom to make these decisions based on what we feel list best and not on money.
 

So Turns Out Ice Water Is Really Cold...

I was challenged by my friend Whiteny to the ALS Ice Bucket Challenge this weekend.  If you would like to see Henry gleefully dump water over my head you can check it out below:


I know there are always some push back when things like this happen... complaints about jumping on the bandwagon, wasting water... but I find it amazing how much attention and funding this challenge is bringing to an incredibly rare and deadly disease.

So I completed the ice bucket challenge, and we all three made our donations:

 You can make your own donation to ALS research at alsa.org 

 Funding and research is critical to finding treatments and cures for the diseases that take our loved ones from us.  Please keep that in mind once this challenge is all said and done.  Consider making donations to other areas of research that impact your life.  Small amounts from lots of people add up to making a huge impact.  But most importantly, be aware of how your congressmen and women vote in supporting funding through research channels like the National Institute of Health.  It is impossible to tell you all the NIH does to further research in our country because they do SO MUCH, but I will say that without them we would have had much less time with our sweet Missy, and without them my future working in public health research would be on shaky ground.  Yet in the last ten years their funding has been cut by 25%, which adds up to billions of dollars lost to medical research. 

So with that I will step off my soap box and just say Charing and Candice, you are still on the clock!
 

This and That

Someone is about to start fall ball and we are all pretty excited.  We found out he is on the lime team (Fall t-ball just has colors, not actual MLB team names) and I was disappointed... I mean, it isn't about ME, but lime is not really my color.  Then Nick pointed out that we could call them the Lime Drives and I decided that:
 1. I love the Limes Drives (!!)
 2. Nick is extremely cleaver.

We were practicing in the yard the other day because our power was out (What?  How do you expect me to practice when there are things like AC and television inside??)  And he seems to have drastically improved since the spring.  I told Nick of this advancement and he smiled and said "That's because he has been practicing with Wii Sports!"

Video Games.  Turns out they are good for something.

In other news, Henry also did very well on his first spelling test!

As a person who has struggled my entire life with spelling this felt like something worth celebrating.  We got pizza.  We have pizza at least once a week, but this was CELEBRATION PIZZA.

He was very proud.

When Did Kindergarten Get So Intense?

When I think back to my kindergarten experiences in the 80's I remember it being a half day event that included snack, rest time, playing in a pretend kitchen that was AWESOME, and having a letter of the week with a song and the letter was dressed up like a person.  What I do NOT remember is having spelling tests:

GUYS.  We are six days into the school year and Henry has a spelling test on Thursday.  The only word we had actually encouraged him to write on his own prior to this week was his name....which included a capitol E and a space ship R.  Apparently we are not preparing him for the epic educational endeavor that is KINDERGARTEN these days...

But have no fear, our boy is doing very well.  Turns out he can write other letters beyond X-O and H-E-N-[spaceship]-Y! (Yay daycare!)  He could spell all his spelling words out loud by Monday and yesterday did awesome on his at home practice test (see photographic evideince of my child's genius above). I am just surprised at how quickly kindergarten has become SCHOOL.  Not sure what I expected...maybe more time with finger painting, and practice walking in the halls, but that's okay.  He seems to be completely capable of all of this and is loving it.

Kindergarten, you are legit, but that's okay.  Apparently this goof ball is up for whatever you've got!

 

Ferguson and Racial Inequality

When I first saw the pictures of Ferguson I thought the article was about something happening over seas, in another country, where things like full combat gear, vehicles with artillery tripods mounted to the top, and tear gas are needed.

Then I realized it was Missouri.  (image from http://www.utsandiego.com)

I haven't been posting links to articles on Ferguson to Facebook or Twitter.  I haven't posted here until now, but I have been reading everything I can about it, and the more I read the more heartbroken I become, and not just over the events happening in Ferguson, but over the bigger picture of racial inequality in America. 

There is a fundamental problem in the United States.  We want to pretend everyone is equal, that we all have the same opportunity to pull ourselves up by our boot straps and make something of ourselves.  But there are these barriers of race and poverty that can simply no longer be ignored.

Study after study has found that people are treated differently in the United States.  When everything else is equal, black women with breast cancer are less likely to survive than white women [1].  Black mothers are twice as likely to have a still born child or a child who dies of SIDS than a white mother [2].  Black mothers are more likely to have preterm births than white mothers[2].  Black children are less likely to graduate from high school than white children[3].  Black men are more likely to go to prison for the exact same crime compared with white men[4].

When you neutralize the differences that come with income, education and geography, studies have found that race alone is a health disparity, or that you are less likely to be healthy, simply because of the color of your skin[4].  If fact, black men who have graduated college have the same health outcomes as white men who dropped out of high school[4].  And while you may want to argue that this could be due to genetics, that possibly the black population is just more likely to die of heart disease or cancer, to have a shorter life expectancy, that is in fact not the case.  Because when you begin comparing first generation black Americans, those people who have more recently come to our county and have dark skin, their rates are exactly the same as the white American population[4].  It is not the genetics behind the color of skin that is causing these issues, it is our culture.

Talking about race as a middle class white woman feels awkward.  It does.  And that is why so many people who really do care continue to stay quiet.  It's hard.  It's awkward.  It's saying that white people who say "I just don't see color" is bullshit.  We all see color. We have been raised in a world that focuses on color. But there is a huge difference in embracing our differences and wanting everyone to be treated equally vs. pretending a problem doesn't exist.

It's easy to say "I don't see color".  It's harder to say "I do.  But it makes no difference to me on how I feel about you.  I want to stand beside you and fight for your rights to be treated exactly as I would be treated.  For your son to be treated exactly as my son would be treated. For my niece to be treated exactly how my son is treated."

I hope things in Ferguson calm down soon.  I fear for the safety of the citizens and the police officers.  But I hope as the dust a tear gas settle then our nation can actually begin the hard conversations on how do we change.  Because what we have been doing is clearly not working and all of our children deserve better.

*The majority of these facts I have learned through the process of receiving my MPH which included a class on racial and ethnic disparities, but here are a list of references if you are interested:

1. Hershman D, McBride R, Jacobson JS, et al. Racial disparities in treatment and survival among women with early-stage breast cancer. Journal of Clinical Oncology. Sep 2005;23(27):6639-6646 
2.  Chen HY, Chauhan SP, Rankins NC, Ananth CV, Siddiqui DS, Vintzileos AM. Racial and Ethnic Disparities in Infant Mortality in the United States: The Role of Gestational Age. Am. J. Perinatol. Jun 2013;30(6):469-475.
3. Heckman JJ, LaFontaine PA. The American High School Graduation Rate: Trends and Levels. Rev. Econ. Stat. May 2010;92(2):244-262. 
4. Hofrichter R., Bhatia, R. (Eds) Tackling Health Inequalities through Public Health Practice: Theory to Action Second Edition, Oxford University Press, 2010. ISBN 978-0-19-534314-4 

 

Success!

So Kindergarten.

Don't worry, Kindergarten isn't full of belts, this is just the only picture I had on my phone from the last week... parenting photo fail...but it WAS taken while back to school shopping, so it counts.

Guys, he is doing AMAZING.  Like, using all capitol letters really doesn't fully express how A-M-A-Z-I-N-G it is going.  I want to knock on some wood (just did actually) because I know we are only three days in, but he is just absolutely dissolving every fear we had.  There have been NO TEARS.  As far as I can see, there has been no fear.  And while I know he must have been nervous, it never showed.  He was confident and brave and just marched right into each new thing like the big boy he is.

His teacher told me that on the first day when she said they were going to Music class and that they would stay with the music teacher that Henry said something along the lines of "Um, excuse me, but I am suppose to stay with you and I think I will just stick with that plan."  She told him that she knew he would love it and that he was going to do great.  When he came back to her room after music she said he looked at her and said "You know what Ms. Turner?? I CAN do this!"

God love his sweet heart, these things don't come easily for him, but I swear nobody would know it.  He is completely embracing this change and is doing so so great.

Well done, sweet boy, well done.

 

First Day!!! (The Kindergarten Edition)

Don't look now, but I might have a kindergartener...

We had possibly been a little concerned this day might be overwhelming...

Turns out those fears were not needed.

We are lucky enough to live within walking distance of our school, so the entire family took the five minute stroll...

It was basically the perfect way to start our next great adventure.

KINDERGARTEN!!
 

Robin Williams, Death, Life, and Freeing the Genie

I saw this tweet this morning and it absolutely broke my heart.

And as I stood in my kitchen wiping away tears I knew that they were not all for Robin Williams, but that's okay.  When there is loss, we all remember the loss that is most important to us.  And that fact that some of my tears truly were for him, for the loss of this artist who until last night I had no idea meant anything to me, shows how deeply he touched our hearts.

****

One day when we were young Boo, Missy and I were having a very important conversation about what we would do if we found a Genie in a bottle.  Boo and I listed our three wishes, which I cannot remember now, and then it was Missy's turn.  She thought hard and then said;

"For my first wish, I would want to never sweat again!"

We laughed but she held up her hand as if to hold off our applause at her perfect wishes until the end.

"For my second wish, I would want everyone who I find attractive to also find ME attractive!"

Classic pre-teen girl idea for a perfect world...we nodded in approval her well thought out wish.

Then she sat back, acting as if she was finished with her wishing.  Like these two wishes would alone make her life perfect.  After a few seconds Boo and I said, "And what about your third wish??" 

"And with my final wish...I would free the Genie of course."

****

This morning my mind has been full of thoughts about body and spirit, and being set free from those chains that bind us.  There is a tragedy when life is lost, be it to cancer, or kidney failure or crippling depression.  Rarely do those left behind not look back and wish things went differently.  But somehow, in this single tweet I feel the Academy captured a true peace within the sorrow that surrounds death.  Those we love are set free, and while that is hearbreaking, it is also healing.

I will not pretend to understand depression.  I will say that it breaks my heart that some people feel such despair that they truly believe there are no other options.  I wish things could be different.  I wish our medical system had all the answers and were able heal the broken bodies, minds and spirits that take those we love from us.  But when someone is lost, I think the best we can do is take comfort in the knowledge that they are now free.

 

Ellie, Ellie, Ellie...

So Ellie.

If I wrote this post Friday or Saturday or even yesterday morning I would be telling you how we are kicking Cushing's ass and expect internet high fives all around.  Thursday we got her on a couple of meds to get her GI issues under control and she was perky and happy and EATING which was a huge win.  Actually about 45 minutes after giving her the first pill to help with her appetite she looked up at Nick, kept her eye on him as she slowly leaned down, grabbed a treat she had ignored for days, and ate it.  Since then it was this crazy improvement of eating more, feeling better, looking better... "OH MY GOD THIS IS WORKING" moments between Nick and I.  It was good.

Then yesterday afternoon and evening she wouldn't eat again.  Same story this morning.  But she still looked pretty good, so I wasn't overly concerned.  Just seemed like something we should drop in on the vet to discuss in order to prevent any major back sliding on our progress.  He looked at her and thought all seemed well since she looked so good, but gave us a couple of suggestions to try... oh, and he thought we should rerun the basic blood-work, just to be safe.

Kidney failure.

WTF

Apparently she has had it for a long time and it is not related to the Cushing's.  Actually, in a random and confusing twist of fate, the Cushing's actually TREATED the kidney issue for the last few years.  Even in her blood work from two weeks ago her kidney numbers were slightly elevated but overall fine. Now the numbers are completely off the charts awful.  

So... we have options.  We are thinking them over.  There isn't a cure.  This isn't something she could bounce back from like the Cushing's, which by the way, the blood-work showed is looking much better based on her liver enzymes, so we really were in fact kicking Cushing's ass.  We can continue to give her fluids and a medication that will help in the short term and could buy her some quality time.  We have decided to try it for now, even if it's just to give us time to process and think.  Yesterday she was getting better, today she is dying of kidney failure.  Wednesday Henry starts kindergarten.  Not that it matters, but it totally matters.  We want this week to be about school and excitement and fun... not explaining once again about heaven and illness and how sometimes people and animals just don't get better, no matter how hard you try.

More on the Last Day

Henry and Ms. Gladys... oh how he loves her.  We wrote her a goodbye letter, and in it he said "I love you Ms. Gladys and I will miss you a million when I go to kindergarten."

That sums it up pretty perfectly. We will all miss you a million, Ms. Gladys.

Henry brought doughnuts for the class to celebrate his last day.  Some of his friends made him cards with pictures of them together, holding hands with hearts everywhere.  He is going to miss his friends and his teachers, but it's good to know he was so loved during his time there.  It does this mama's heart good to know that when I can't be with him, he is surrounded by people who think he is as amazing as I do!

One chapter ends, another begins.  We went to set up his stuff in his new kindergarten room last night and it went really well.  Believe it or not I actually forgot my phone, so somehow there are no pictures of this event, but worry not, we will take pictures on Wednesday morning.  We walked to the school, which he LOVED.  He seems thrilled with his new teacher and his new room.  He loved the music room and the STEM lab.  Most of all, he loved that one of his friends from preschool, Juliet, is in his class.  Nick and I are actually old friends with her parents so things are really working out well for everyone involved!  Henry and Juliet walked around the entire school together holding hands and playing... I think it's going to be a great year!

The End of the Preschool Days

Today is Henry's very last day of preschool.

The first picture is from October of 2012, the other is this morning.  

I know I keep saying it, but seriously he is growing up so fast.  I thought it would be cute to do this side by side picture, but didn't really think he would have changed THAT MUCH is the last two years.  Then I saw them side by side.... WHAT IS HAPPENING??  (And don't even get me started on his hair... the love of his long hair is so strong I may never let him cut it again...)

Tonight we go to kindergarten open house where he will get to meet his teacher and set up his desk.  Next Wednesday we start an entirely new chapter for our sweet boy, but today we are celebrating something that has been pretty major, and is coming to an end.  When he was three and walked into Ms. Gladys' class we had no idea how important she would become to us.  She has nurtured and loved our boy, and we are so thankful for how she has helped him grow.

He seemed so big when we took this picture.  Now he looks so tiny.  Growing up is all relative I guess...

A Not Exactly Quick Update on Ellie

So things are very up in the air right now, but I figured you all would like a quick update on our sweet girl.  I mean, you are all constantly thinking of the health and well being of my perfect puppy, right?

Ellie has had a lot of ups and downs these last few days, but I am starting to think she might actually pull out of this.  Basically, Cushing's is a lot like having a constant level of high dose steroids going into your body.  When we started her treatment it got that under control, but unfortunately without those steroids her body was just too weak to care about ANYTHING.  No eating, no drinking, no moving.  Saturday we started the fluids and did some basic force feeding through a syringe and she tolerated it okay.  That night she ate three small bites of chicken, and that felt like a huge win.

Sunday she seemed a little stronger and ate several boneless chicken thighs.  She was only eating or drinking when prompted, but seemed to be doing better.  Then late that night she started having diarrhea... oh sorry.  Should I have warned you I was going to talk about my dog's bowel movements in this post?  You aren't eating, right?   Anyway, having those issues triggered a new round of no eating or drinking stretched through most of Monday.  We were back to laying on the kitchen floor with her, feeding her through a syringe.  She was pitiful, but not AS pitiful as she had been Saturday so we still had a little hope that we might turn a corner.  She was able to stand up and was walking to the back door to go out, plus her eyes just looked a little brighter. 

Yesterday I was able to work from home so I could be there and help take care of her.  We continued with the fluids through the IV bag (technically subcutaneous fluids) and feeding with the syringe.  The vet suggested we add some pumpkin to her diet, which helped a little.  While she was not eating or drinking on her own, she did continue to seem more like herself, barking when Nick came in and getting up to ask to go out.  That night she ended up eating some chicken and drinking some water on her own, so things were looking up!

Last night she got me up in the night to let her out then really wanted me to give her water through the syringe.  She seems to have decided she likes me laying in the floor making her a constant water fountain.  That is much more like the Ellie we know and love.  She ate more chicken and pumpkin this morning and at lunch and is continuing to get stronger.  The diarrhea (sorry) is still a major issue but the vet wants to hold off on giving her yet another medication and see if it works itself out since she has the IV fluids and isn't showing signs of dehydration.

Wow.  That turned into a much longer and detailed update than I planned to give.  But that's where we are.  The thing with all of this is that there is a potential light at the end of the tunnel.  We are fighting something that is treatable, and while the road ahead may be long and difficult for all of us, we are hoping in the end to have a happy healthy dog again.  If she can't recover, then we will accept that, but we are all fighting like hell for a chance.  She is doing her part, and there is just not a question that we will do ours.
 

Fighting for our Girl

Sigh.

Ellie.

She is not doing well at all.  Still not eating or drinking...she has lost two more pounds, which means she is down to 16 pounds when her healthy weight is around 24.  I made her a chicken/rice/veggies dinner last night with some of her critical care food mixed in and she wouldn't touch it.  Then we just offered her the chicken alone, no way.  Then a hot dog.  Still not interested.

We went to the vet this morning and Nick and I both really thought this was it, we were not coming home with her.  But after talking to the vet we found out that if you over medicate with this Cushing's meds, then stopping eating and drinking is a potential side effect.  That would be been really good to know when I called and talked to the vet three days ago... but we can't go back in time.  It's all a delicate balance.  They knew her appetite would go down, so at first it wasn't as worrisome.  Now it is very very worrisome.  So she has stopped her meds and we are watching her closely, trying to get any amount of food into her. 

She came home with fluids and they taught us how to give them to her... it's all a lot to take in.  How sick she is, how much worse it has gotten so quickly, that we really might lose her.  Soon. 

But for now we are all fighting.  We love our girl, and while we all agree this is no way for her to live long term, the vet seems to really think we can still right this ship... I just hope she can hold on long enough to get her where she needs to be...

This is so hard.
 

Updates

Hi.

I went out of town... did you notice?  I usually post a lot when I am on work trips, what with me being a hermit who enjoys hanging out in her room alone, but turns out my laptop wasn't willing to get on the internet, so no blog posting for me.  That doesn't mean I manged to get extra social or anything.  I still enjoyed my hermit-ness, just this time by watching endless hours of  Orange is the New Black on my Kindle Fire.  

I posted this picture along with the caption "What to pack for a three day work trip: Running shoes... so I can at least pretend I have things planned for my down time besides 12 hours of Orange Is the New Black... #ICouldRun ! (#doubtful)" to facebook the morning before I left, and I really was joking, but turns out, I was spot on. At one point I got all the way dressed for the gym, put my shoes on, then decided to reboot my laptop one more time to see if I could get the wifi working.  While I waited for the reboot I sat down on the bed... and basically didn't get back up.  That was at 6pm.

Anyway, enough about my lazybones.  My work trip went great.  I can't say enough how happy I am that I both enjoy the work I am doing and the people I am working with.  It makes things so nice!

My welcome to the department flowers from our department chair!

In other news, our Ellie girl seems to be having a hard time.  It's really very hard on all of us.  She isn't eating, and is having a hard time moving around.  The Cushing's is in an advanced stage, and she has lost a lot of muscle mass... I don't know.  We are very afraid we me lose her, which just feels so unfair now that we have figured out she has something that is treatable.  We are able to get her to eat some people food, so I talked with the vet and came up with a plan for Ellie's new fancy people food diet of chicken breast, rice, broth and pumpkin.  We are mixing that in with a critical care food they gave her which they said most dogs love.  Ellie is not most dogs, so we will see how that goes...  I am just praying we are able to right this ship and get her feeling better soon.  Where she is now is no way for her to be long term.

Tonight we have Henry's Kindergarten evaluation... HOW IS IT TIME FOR THIS??

So I guess that catches you up on my week.  Stressing about Ellie, busy at work, not exercising, getting ready for Kindergarten...

PS.  We got a new fridge because the old one broke. Look at how glorious it is...