Just about two weeks ago we took a leap of faith and attempted to give our little guy a more "normal" life. We went on this journey hopeful to improve Dylan's quality of life.  Everything started off great. His labs were perfect. In fact, they were the best they had been in over a year. We were able to get Dylan off of his original anti-rejection med (Prograf) relatively quickly. It was only four days into the wean (usually takes 1-2 weeks) and we dropped it. At the same time the level of Rapamune (the new med) in his blood was at goal in just one dose. Everyone was pleasantly surprised at the ease of the switch. We felt as if Dylan was finally getting a much deserved break from his many ups and downs. In short we were on cloud nine. Sadly, there was a very dark cloud in the distance we were unable to see.

A week into Dylan's transition we were enjoying not having to fast before and after his medication. Dylan could eat and drink whenever he wanted. There were no tears throughout our day due to being hungry and having to wait. After two years of the same routine it was a breath of fresh air. Dylan was really enjoying his new found freedom.  At this point Dylan had been getting labs twice a week and like I mentioned before they were beautiful. Day nine was a different story. I always open the results online with one eye open. It seems nerves always get the best of me at that moment (I am not anticipating it will get any better). My heart sank when I saw the numbers. Over the past almost eight years I have become an expert at deciphering lab results. I knew in that moment something was up. I immediately called the on-call GI at Lucile Packard. I wanted to make sure that whatever was going on was caught early. My gut was telling me that is was not something small and should not be ignored.

I spoke with the doctor letting her know what was happening with his labs. She too felt like we should repeat labs the following day just to follow them and see which way they were going to trend. We had decided that doing them locally would be fine as they were not at a dangerous level. I am sure some of you are thinking that you would never know what to do in these situations, but let me tell you, a parent's intuition is a very powerful force and near impossible to ignore. After about an hour I received a phone call from the doctor again. She had spoken to the attending and he felt it was necessary to do labs at their center so the results could be looked at prior to the the holiday weekend. So I went to bed to prepare for a very long day. 

It was a very early 6 am wake up call. Tegan, Dylan and I got into the car and started the trek down the freeway. It really doesn't seem like that far, but it is such a long stretch of road and commute traffic only makes it worse. I guess the one good thing about driving early is the kids usually go back to sleep; making it pretty peaceful in the car. It took nearly two and a half hours to get there. Once we arrived we got labs done and I went to get some food for the kids. I wanted to stay close by for a few hours just in case they decided to see us if labs were bad. At about 11 am I decided no news was good news and drove home. I knew that it was a long weekend and spent most of the afternoon calling our coordinator to get results. With about 20 minutes until the office closed Noah finally got a hold of her. The coordinator told us the labs were great. When Noah asked for specific numbers we quickly realized that her idea of great and ours were very different. Noah demanded that she speak with his GI and get back to us. When she called back she told us to repeat labs again on Tuesday (Monday being Memorial Day). I was pretty nervous to wait since his numbers were creeping up each day. 

Tuesday morning could not come fast enough. Dylan has been feeling pretty good despite acting a little goofy from all the steroids, but the fear of what was going on inside of him killed me. After his blood draw, the day dragged. It wasn't until after eight that we finally got the results. It was a nightmare realized. Seeing numbers ten times higher than what they should be is never a settling feeling. Knowing your child's vital organ is angry is even more so. I again called the GI on call to get a game plan. I was told that in the morning they would discuss Dylan and that I would be called with a game plan. I waited and waited for a call. Noah and I emailed and called multiple times to get some sort of plan. The key word is waited. All day long. No response. I emailed our regular coordinator who is out of town making my feelings on the lack of phone call well known. It was no shock that in a very short time frame after that we received a long awaited phone call. 

Surprise, surprise...Lab work and clinic the following day at Stanford. The doctor also wanted Dylan to take a very hefty dose of Prednisone as well as restarting the Prograf. There was an instant feeling of defeat. My poor baby was having to take two huge steps back and the joy that he had from his recent freedom was being taken away. Dylan deserves a break. He has been through so much in his life. I told Dylan what the plan was and I could see him fighting back the tears. I too was fighting back the tears. Sometimes life is just unfair. Sometimes bad things happen to good people. 

Today we made another trip to Stanford for repeated labs. We were pleased to hear today the the Prednisone and added Prograf helped to drop his labs almost in half. Sadly, we learned today that the doctors are certain that Dylan is in rejection. They believe that his Prograf may have been weaned too aggressively. For now our only plan is to get his liver happy again. His doctor wants labs normal by next week. If they have not improved Dylan will be admitted for IV steroids. We hope that this is not the case and come Monday everything looks much better. As always, thank you from the bottom of our hearts for all your love and support. We could not do this without you. 

-Amber

Over the course of the last few months we've had some sense of relief with Dylan's liver.  No major hiccups since beginning of the year (which has been nice for a change).  Early on we were advised that it can take a good year or two to get things to a point where life settles down a bit and its not so much of a race back and forth with complications after complications.  Although I consider our journey less troublesome than others, we've for sure seen our fair share of hard moments over the last 2 years post-transplant.

As things have been what we consider "good", they've also been very challenging as well.  As with so many complicated things like this, there is also some sense of a trade off.  Over the course of the last 2 years, Dylan has had major and often times very scary allergic reactions.  Pre-transplant Dylan was allergic to dairy and peanuts but post-transplant that list has grown and comes up out of nowhere at times.  

Just a few months back we were at Lake Tahoe enjoying Dylan's 2 year Transplant Anniversary and yet again he had another anaphylactic allergy attack...this was especially bad and we probably needed to go the hospital but Amber was able to catch it in time and Dylan was able to get it all out of his system prior to needing to inject him with our EpiPen (although in hindsight we should of).  When you go into anaphylaxis your blood pressure drops among throat closing/swelling and a whole slew of other issues.  The blood pressure drop is especially troublesome in Dylan's scenario b/c he has a really small  Hepatic Artery, which if it clots off or collapses would require another liver transplant.  Its such a fine balance this life, from timing of medications, to nutrition, to allergy interference, and still trying to just be a normal kid growing up.  Dylan has of course become very scared of trying anything new and eating out at places is very difficult for him, as for him even though we have told him to trust us and we've read all the ingredients sometimes its just not good enough and an attack happens.  Imagine being 7 years old and going through what he has and overcome and then fear what you eat.  One of the biggest culprits of the allergies changing and having no rhyme or reason to their behavior is due to his anti-rejection medication (Prograf) that he takes.  Dylan forever needs to be on anti-rejection meds (hopefully someday this will change but for now and the foreseeable future, this is how it is).  The med is a double edge sword, he needs it to keep his liver happy but at the same time this toxic med is responsible for uncontrollable allergies and high instances of cancer among transplant patients.

Dylan has consistently had chronically high Eosinophils in his liver, which are immune white blood cells, these are speculated to be what is causing his constant inflammation in his liver and hyper sensitivity.  At last clinic visit with Stanford, they advised about us switching his anti-rejection med to another one called Rapamune and that it should be discussed and considered due to his allergy issues.  We have looked up all the pros and cons and at this point see it as his only options available given medical science today.  Its a scary time to do this and embrace it, as its a super fine balance to regulate.  Dylan will need to be tapered down from his Prograf, while adding in the Rapamune and start a therapeutic dose of Prednisone (I hate this stuff too, its evil) but this is done an an attempt to keep his liver happy during this transitional period.  The process will take many weeks/month(s) to be completely done with.  Although it has lots of upsides, the risks of downsides is overbearing at times to think about.  I feel like we just got his liver to a  point where its semi happy (but in looking back its only been about 3-4 months, but as parents who have been in/out of hospitals, tests, and procedures for 7+ years, this break although semi short has been nice....a nice change to say the least).  

The risk of this new med carries a lot of the same negative issues as its literally a derivative of Prograf but just has less clinical side effects (or so they've determined at this point in time).  It still has risk, it still has the potential of bad things, but the risks outweigh our options at this point, lesser side effects is better than the alternate; its crummy to think that way but its the only thing one can do.  We have to give it a shot and hopefully by the powers that be, its better than Prograf.  Trying everything in our power to give our little man the best life given his circumstances in his life.  I know we are in for hard times over the course of the next few weeks (labs every other day, clinic visits, etc...) and at the end of this time I hope what Dylan is subjected to this go around is for the betterment of his future.  

As always thank you for constantly thinking about our family and keeping Dylan in your hearts. 

-Noah