Happy Liver

Just a quick post to update on Alexa's labs and clinic yesterday.

Turns out, Alexa's liver is quite happy right now!  Her LFT's have remained quite stable over the last two check-ups.  They are sitting happily at 48(AST) and 60(ALT).  They are the best they have been in months and SO very close to being in the normal range.  And she has a runny nose! So I am quite pleased with those numbers.  Who am I kidding?  I was ecstatic yesterday at that piece of news.

She finally gained some weight--No surprise there though, as she has a new found appetite that I am just loving!  She plans all her meals way in advance.  Tells me exactly what she is having for snacks and lunch. 
She is not a big fan of meat.  She will eat certain meats, like chicken nuggets, hot dogs, ground meat in pasta or meat loaf. But I don't think she will ever love a big, thick steak.  And I don't really care. 
She finally has a good relationship with food.  She ENJOYS meal and snack times.  Her protein is perfect right now.  She is happy and healthy and gaining the appropriate amount of weight.  So if she decides she never wants a steak, I really don't mind.  She eats plenty of food and quite a variety.  That is more than good enough for me!  My days of fighting with her at meal times are gone. 

She also grew some, which was pretty evident by the lack of pants she owned that covered her ankles.

There is one thing that we will be watching closely--her EBV and CMV levels.  Both of those are common viruses that most of us have.  They remain dormant in most of us, but wreak havoc on an weakend immune system.  Since Alexa's new liver was EBV positive, she was given the gancyclovir and cytogam infusions after transplant to ensure that the viruses remained dormant while her immunosuppression was at it's strongest. 
Since she has finished both medications and her immune system is still being suppressed quite a bit, both viruses have now appeared to become present in her blood.  This is not a huge surprise to us.  The viruses have so far not been replicating themselves.  In fact, the viruses were present in such low numbers that the lab could not measure them.  

It is quite common in transplant kids, but needs to be watched carefully to ensure that they do not get out of control.  Once yesterdays levels are reported back, the hope is that we are able lower her immunosuppression just a tad to see if her body is able to fight off the viruses on it's own.  It is quite a sensitive balancing act. They cannot lower her immunosuppresson too much as that could remind her body that she has a new liver and send her into rejection. 

They have to find the perfect balance between keeping her strong enough to fight the EBV/CMV but not so strong that she will fight her new liver.

It's hard work keeping this liver happy!

But we have a great team and they are doing a good job of monitoring all her levels!

And to show how appreciative we were of their never ending devotion to us, Alexa and I got busy over the weekend baking cupcakes for our great team.
 

We also decided to take some over to 6A, the transplant ward, where we took up residence in July.

Alexa carried those trays to the nurses and doctors proud as a peacock!  And was super excited at how thankful they were.
 

Alexa's doctors and nurses work so hard; they are so incredibly busy, making sure that our kiddos get the best treatment possible.  If felt great to show, even in this very small way, how appreciative we are of all they do.  

Labs and Metabolic Clinic

Today we had another set of labs scheduled.  We were just there on Monday-- prior to that we thought that we could try going to labs every 2 weeks.  Clearly the fact that we were back today is an indication that we are not ready for every 2 weeks.
I had mentioned in my last post that Alexa's Liver Function Tests (AST and ALT) had been on the rise. They were inching their way up slowly to a place that would require many more investigative tests should they not go down.  So Monday, I was really hoping that they were on the down trend.  Things were looking hopeful...
Her doctor came in and was so excited to see that her ascites is gone! Completely normal!  He was kind of surprised, and still bothered by the fact that he could not give me a reason for the ascites in the first place. He is a scientist after all, and they NEED reasons for everything!  And the fact that it mysteriously came and went on its own, even after every test under the sun reported no abnormalities, will just never sit well with him.  But it does with us....we gave her time to do her thing and she did.  We are and have been weaning down her lasik (the medication that helps relieve fluid from her body) and as of Monday, coincidentally, Thanksgiving for us Canadians, she will be completely off of it if we do not see signs of ascites returning.

But back to those LFT's.  Dr. A came in and told me that they had increased again.  And for my own sanity, I think he decided to not tell me how high they had gotten.  Alexa has had a cough since about Saturday, and the rise could very well be explained by the virus, however the continued rise could also mean a host of other things, one of the worst being rejection.  So although, I had not been panicking, these numbers have definitely been weighing on my mind.  If I had KNOWN that Mondays AST was 84 and ALT was 83, I think, who am I kidding, I KNOW panic mode would have set in.  And I think they know this too.

Since I already had a metabolic appointment today, they asked that I come in a bit early to have our labs done again.
I got our metabolic nurse to give me a print out of today's lab results as I could not wait for transplant to call me in the afternoon/evening. The good news is that they are better.  Not perfect yet.  They could be lower. It would be nice if they were even lower.  They still are slightly high.  But they are better than they have been in the last 3 weeks.  We are about as good as we were at our September 17th appointment.  And as I was typing this, I got the call from the liver team with the rest of our numbers.  FK is perfect so no dosing changes necessary!  Phew!!! Again, I breathe a sigh of relief!

Meanwhile our metabolic team was super happy with her progress.  It was nice to be sitting in the metabolic offices, and to not be anxiously waiting for our nurse and dietician to walk in with the dreaded ammonia results.  For once, I did not care and did not even ask (not even for old time's sake!) It was nice not to have to document what she has, or more frequently what she had NOT eaten, as was more often than not the case with Alexa pre-transplant. We didn't care about how MANY calories she consumed and we didn't even plot her on the growth curve!
Instead we met and talked about all the wonderful things she has been doing and eating!  We chatted about how school is going and different life is from just a couple of months ago.
They looked at her amino acids and were generally happy!  The only one that was off is her arginine.  It is low, as is typically amongst citrullinemia patients post-transplant, so they have started her back up on a low dose of L-Arginine.  (one of the meds she was on pre-transplant).  It's not the end of the world and I knew this day might come eventually.  Chances are she will be on it for a long, long time.

As I mentioned earlier, we are celebrating Thanksgiving this weekend.  And boy do we have a LOT to be thankful for.  I am thankful for the wonderful doctors and nurses at HSC.  I am thankful that we live close enough to be able to enjoy the luxuries that HSC has to offer.  I am thankful that I married such a loving and devoted father who knew that the only chance his daughter had of living a life free of brain damage, was to give her a part of his liver.  He did not waiver, he did not second guess himself.  He just KNEW what had to be done. I am thankful that right now I have a healthy happy 5 year old girl who was given such strength and bravery. I am thankful that for the first thanksgiving ever, Alexa will be able to really enjoy a thanksgiving dinner and at least try turkey. I am thankful for our family and friends who have supported us along this route we have embarked on.  The list could go on and on!

I asked Alexa what she was thankful for.

Her response:

I am thankful for cheese strings and cheese slices and wild wings mac and cheese bites! 

And with that I would like to wish all of you a wonderful, happy and healthy Thanksgiving from our family to yours!!!!  

 

The results are in!

And if the length of time it took to report back to us didn't give it away (I've learned, the worse the scenario the faster the call), this face will surely tell.

Loving her "reward" shades!

The CT reported absolutely no narrowing at the connections in the vessels and no blood flow issues!  Happy faces and thumbs up all around at this piece of news as it means that no surgical intervention is necessary! Phew!!!!

Of course, the harder you look, the more you will find. The CT reported "a noticeable prominence of her small bowel"  Huh?  It was explained that a portion of her small bowel is slightly enlarged or swollen....
What exactly does that mean? Maybe nothing--probably swollen from the trauma of the surgery; maybe it was like that all along, maybe it wasn't.  Maybe it will be like that from now on....Who knows?  But the doctors do not seem so concerned and to be honest, I am not that much either.....It will continue to be monitored at our regular ultrasound appointments.

We did have a slight scare at yesterday's appointment which resulted in repeat blood work.  Of course the specific blood test they were monitoring (PT-INR) could not be taken from the PICC, so she had to have 2 separate peripheral draws making her a not so happy camper momentarily. Not sure how we are going to go back to draws once our PICC is removed (which I hear might be in the not so distant future!). Alexa got through the second draw, and I got through the waiting for the results and her level came back at a perfect 1.1.  I took a huge sigh of relief as the first level reported was super high--immediate intervention kind of high! Glad we did not have to go down that route! I am sure the lab just wanted to see how quick I could grow some extra grey strands! Turns out--pretty damn quick!

We have her prograf level exactly where we want it right now! And in 1 week, we eliminate 3 medications!!! Her daily IV infusion of gancyclovir will be done in about 3 weeks time and we only have 2 more of those 4 hour cytogam infusions that we get done at the hospital! I can see our 3 month post-transplant up upon the horizon!

And if it were not for those pesky LFT's, I would be doing a happy dance right now! Her LFT's are being closely monitored (more so than usual), they are not concerned YET, however they are (and I quote) being "mindful" of them.  They have been increasing slightly over the last 3 weeks.  Not huge, only about 5 - 10 points, but increasing 5 points at each visit for 3 weeks in a row is definitely not the trend they want to be going in.  She has had a runny nose and that could very well explain the increase but still not happy.  We definitely want to start heading in the other direction.

And this seems like a great time to remind everyone of The Great Camp Adventure Walk that we are doing on Saturday to give back a little to the hospital that has given us so much!  I am soooo close to my personal goal.  Thank you from the bottom of my heart to all those who helped make this happen!

If you would like to donate please click on the link below:
http://www.support.sickkidsfoundation.com/site/TR/Events/CAMP_13?px=1255435&pg=personal&fr_id=1040

Guess who's famous?

Okay! Not really....but famous enough for this household.

A bit ago, I received a call from the SickKids Foundation who are hosting The Great Camp Adventure that we are taking a part in.  They called to inform us that we had won 4 tickets to the American Idol Live Concert at the Air Canada Centre.  It was a great night.  We met another wonderful family who is participating in the event also.

We also got to meet two of the staff who work at the foundation and they asked if they could do a post on their blog about Alexa's journey with The Hospital for Sick Children.  

We were only too happy to be asked to be a part of it!

http://dothehappy.tumblr.com/post/61321571149/superhero-dad-donates-part-of-liver-to-daughter

Our Great Camp Adventure for Sick Kids!

It's well know that I have some pretty awesome friends!  I would like you to meet a couple of them:

Cecilia, Carla, Roberta, Marklin (and me)!

And together we will be participating in the Canaccord Genuity Great Camp Adventure on September 28th.

Our fundraising dollars will be donated to The Possibilities Fund at Sick Kids.  This fund is available for urgent needs, including providing the best and most innovative care to patients, whether they are critically ill, injured or living with a chronic condition.  This fund allows Sick Kids to invest in research projects so that scientists can change the future of kids' health, and to train doctors who care for children across Canada and around the world.  The Possibilities Fund supports people, programs, equipment and physical infrastructure, and allows SickKids to continue to be the exceptional place it is. 

Why are we doing this?
Because we LOVE to exercise?  Hahaha!--Clearly NOT!  So why did my friends jump at the chance to walk 20km? I am sure each of them have their own reasons, these are just two of them:

Cecilia's son, Anthony was diagnosed with hodgkin's lymphoma cancer when he was 13 years old.  At the Hospital for Sick Children, he received aggressive treatment and we could not be more thrilled to report that he has been cancer free now for almost 4 years!  Anthony is a Survivor!

As for myself, well many of you know my girl, Alexa was diagnosed at 9 days old with citrullinemia(one of the Urea Cycle Disorders).  For the last 5 years, she has been followed so very closely by the metabolic doctors at HSC.  On July 18, the very best liver transplant doctors gave her another chance at life.  They transplanted a portion of her father's liver into her to cure the effects of living with citrullinemia.  The coordinators, nurses, doctors and surgeons are amazing.  Each and every one of them ensuring that we had (and will continue to have) the VERY BEST CARE during the long road ahead.  Alexa has (and still is) a participant in many trial studies that are available only with these types of funding.

Without the funding, there is no more research, no more hope!

I hate more than anything that we have to rely on Sick Kids Hospital, but I am so very grateful that they are there for us.  Without them, Alexa might not be with us today.

We walk so that one day there is no hodgkins lymphoma.  

So that one day there will be a cure to the genetic mutations that cause urea cycle disorders. 

So that one day in the not so distant future, kids can be kids--happy and healthy! We have hope!

So what exactly is this?

It's an up to 20 km challenge-by-choice adventure walk.  We will go at our own pace and participate in ultimate camp adventures along the way...

I am not going to lie, walking 20km scares me--I have never done it before.  I have trained for 10km runs but walking for 6-8 hours seems so much more daunting to me.  And then I think of Alexa and Anthony, and all that they have been through to overcome their medical conditions.  And well if they can endure all they have and come out smiling, we sure as hell can make the 20km.  Even if I have to crawl across the finish line, I will do it for them!

How can you help?
We would be ever so grateful for any donations.  Small donations add up, and if we can donate enough to get the research coordinator and scientists in the laboratory for even one more hour, then this is all worth it!  If one child is able to get one more hour of physiotherapy or occupational therapy, then this is all worth it! If one more piece of equipment is able to be purchased, well then, this is all worth it!

If you are able to do so, please click on the link below to be directed to my personal page:
http://www.support.sickkidsfoundation.com/site/TR/Events/CAMP_13?px=1255435&pg=personal&fr_id=1040

Or you can support our team of wonderful ladies (A & A's cabin) by clicking on the following link:
http://www.support.sickkidsfoundation.com/site/TR/Events/CAMP_13?team_id=1130&pg=team&fr_id=1040

Finally, we would LOVE, LOVE, LOVE, if you would come out and cheer us on!  Smiling faces and familiar voices at the 15th kilometer, may be just the push we need to make the final stretch!

If you would like more information on the event, please click here:
http://www.support.sickkidsfoundation.com/site/PageNavigator/camp_13_home.html#ad-image-0

As always, THANK YOU so much for all your continued support!