Marathon, not a sprint....Marathon. Not. A. Sprint.

Hello again, friends. Our triop to Disney World in March was fabulous!!  The past couple of months, however.....not so much.  I'm not sure my reasons, exactly, for the lack of posts....except I will say that I just simply haven't wanted to re-live any of it.  I'm in a great place right now this afternoon though, so here it goes!

Our first stop in Disney World!!

Elise was officially transformed into a princess, and Ethan was made a Knight at Bibity Bobbity Boutique (BBB) in Disney! 

Elise's labs when we returned from Disney World in mid-March were fantastic! So much so, that Elise's liver doc dropped her steroid dose down.  Her labs continued to trend down for the next couple of weeks which looked great, but then on 5/20/15, her numbers suddenly began to skyrocket. A biopsy was scheduled--her 3rd liver biopsy in five months-- but because of the Memorial Day Weekend, the biopsy couldn't happen until Tuesday of the following week. By the time of the biopsy, Elise's liver panel was the worst it's ever been.

Specifically, on 5/28/15.... AST 605, ALT 1011, GGT 124, direct bili 0.0.

Left: Elise and me in the pre-op area
Right:  I got scrubbed in and ready to help facilitate induction of anesthesia.  For her past 3 or 4 procedures, they have allowed me to go with them back to the OR until she is asleep.  It's much easier for everyone that way. 

Elise's biopsy was completed with no complications, and she was admitted for treatment of mild rejection-- again. Dr. Fishman is not convinced that this is a new rejection, but rather, more than likely a flare up of the original rejection diagnosed in March. In any case, Elise was immediately started on a 5-day IV steroid regimin inpatient at TCH. She responded fairly well and was discharged with an improved liver panel-- not perfect, but improved.   The hope--or plan-- was that her numbers would continue to trend down on oral steroids at home.

Elise with one of our liver docs, Dr. Himes, during rounds.

5/31/15.... AST 99, ALT 324, GGT 129, direct bili 0.0

Imagine my discomfort when Elise's repeat labs last week didn't reflect a downward trend; rather, her numbers were rising again.

6/8/15.... AST 110, ALT 370,  GGT 203, direct bili 0.0

Dr. Fishman wanted to hold off on making any med changes last week though. He wanted to speak w/ a few other members of the team and wanted to have another set of labs before taking action. As we know from a couple of years of experience with Elise, her liver panel sometimes fluctuates for reasons completely unrelated to liver issues. I must admit, I had some serious reservations w/ regard to this plan to "just wait it out." But I kept telling myself that Dr. Fishman is almost always right, and something very similar to this happened last year, and he proved to be exactly right in waiting.  And so that's what we did.

Which brings us to our "liver clinic" appointment with Dr. Fishman today 6/17/15 at TCH. Elise weighs 38.5 lb and is 3'2" in height.  When Dr. Fishman and Sarah walked into our room, both commented on how wonderful Elise looks! Big white eyes always make everyone feel better. When Dr. Fishman asked Elise how she was doing, she responded, "I like tap dancing better than ballet, and I'm also doing swimming."  Well there ya have it, folks! Sounds like she's doing just fine! Lol. Seriously though, Dr Fishman loves to point out, "We have to look at HER, not just her numbers." And SHE looks great.  More GREAT news though is that Elise's labs today are in fact MUCH IMPROVED!!  Praise GOD!

Liver Clinic-- June 17, 2015.  Elise, our transplant coordinator--Sarah, and our primary liver doc, Dr. Fishman

6/17/15..... AST 54, ALT 89, GGT 115, direct bili 0.0


Dr. Fishman was really pleased with these lab results today and decided to decrease her Prednisilone steroids by half and re-check labs next Thursday. He says that if her numbers continue trend down, then great! That would be ideal. But if her numbers next week are instead trending in the wrong direction....he has a couple of ideas for possible med changes. One major change he is considering making would be to add an immunosuppressant med Cellcept as a supplement to her Prograf,  because as he explained, she just can't stay on high dose oral steroids forever.

Another part of the plan for the coming week is an ultrasound of Elise's liver. Apparently, Dr. Fishman reviewed Elise's biopsy report with the pathologist and other members of the team, and within the tissue sample, there were some suspicious cells in question.  As a result, and in the interest of being thorough and leaving no stone unturned, Dr. Fishman wants the ultrasound to take a close look at the blood vessels and profusion of blood throughout Elise's liver. According to Dr. Fishman though, he really does not believe that the ultrasound will show any problems because if there were not adequate blood flow in her liver, her platelets would be low and her conjugated bili would be elevated...none of which is the case. Elise's platelets and direct bili are perfect, as is her liver function, as evidenced by her perfect albumin, clotting times, and vitamin levels.

So what have we been doing since returning from Disney World in March?  Clearly, I haven't been blogging.... lol.  We have been LIVING life and enjoying every moment of normalcy. Towards the end of March, I traveled to California to run a half-marathon in Livermore Valley with my uncle, who has been a virtual "coach" to me since I began running last year. 

Parrain Denis and me at the Livermore Valley half-marathon, showing off our new "bling" after crossing the finish line!

Then in April, I ran in my third half-marathon with friends in Galveston.  

Crossing the finish line at the DIVA half-marathon in Galveston, TX

Ethan graduated from Pre-K a few weeks ago....his graduation ceremony was SO cute! Elise was actually still inpatient at TCH on the day of his graduation, but David went to stay with her so I could attend with Ethan.

Ethan, the pre-K graduate!!  So proud!!

Elise started dancing classes a couple of weeks ago, and she couldn't possibly be more thrilled. She tells me she prefers "tap" over ballet.  And last week, Ethan and Elise both started this Summer's swim lessons!! In May, we took a quick trip back home to Thibodaux/ Houma to visit with family, and we are looking foward to "Grammie and Paw" coming over to our house this weekend for Father's Day weekend! 

Elise LOVES to dance....she likes both ballet and tap....but tap is her favorite! :-)

Swimming lessons 2015.....this year both Ethan AND Elise are participating!! 

Thank you all for continuing to follow Elise's journey. Dr. Fishman has often reminded me in one way or another that "This is a marathon, not a sprint." I keep reminding myself of that fact as well. There is no black and white instruction manual on post-transplant treatment. It can be compared to running a marathon through the hills of California; that is, the hills or bumps in the road might seem to high to climb, but they're not, and easier roads will follow. There will be times when we  will be running downhill--and we will celebrate and take deep breaths; we will use the good times to gather our energy for challenges that may lie ahead.

Elise has proved time and time again that she will fight any fight. She knows how incredibly proud we all are of her, and she absolutely thrives on that. She told me on the way home today, "Mommy, my liver is not broken...it is perfect!" That it is, my sweet girl......your new liver is perfect, and we will keep it that way, no matter what. 

LifeGift 2nd Chance Run.  It was rained out....but Elise and I enjoyed ourselves anyway. We never pass up a chance to spread the DONATE LIFE message! :-)