I remember leaving our house the night before and making that roughly 2 hour drive from our house to my cousin's house near the hospital. We had intended to leave early and arrive early but that's not how our day went. We had so much on our minds that we didn't end up leaving our house until about 7-8pm at night; arriving to Stanford area around 10pm ish. The whole day was a process; I recall mentally it being very hard. A lot had been going on to keep us occupied up until this day, lots of friends/business associates/caring people were doing lots of fundraisers for Dylan and a tremendous amount of love and support was being shown for our family. Perfect strangers offering support online, old school friends giving well wishes, to lots of family being available to give us the best advice and support they could. The truth of the matter is, there was not much any one person could say or do to prepare us for our night and upcoming days ahead. And before we could turn in for the night, both Dylan and I had to shower with antibacterial soap in preparation for surgery the next morning. I recall as I was washing Dylan that I became really scared, so incredibly terrified for him, and in just a state of disbelief for our situation...Before we went to bed that night, Amber/Dylan/I all prayed; although that sounds like a typical thing to do, this is not something that I had ever done in my life before, as its not how I was raised. I couldn't help but ask the typical questions that anyone would ask. Why is this happening to us? What will happen to him? Will he be ok? Will this fix him? Going to bed that night was beyond hard and it was short lived with very little sleep. Most of you reading this, came into our lives around this point...Surgery day. I wont bother with the specifics of this time of our life b/c a lot of you have followed our story and read it already.
One of the things that I think we never mentioned much is what the docs prepared us for prior to surgery. Prior to surgery we had many meetings with docs, social workers, donor advocates, etc...the one thing that still sticks out in my mind and one that I had hoped Dylan would prove them all wrong was this transitional period after transplant. I recall us meeting with Dylan's transplant surgeon and discussing how things will go and what we can expect. The one thing that I can never thank this man enough for is his honesty. Dr. Esquivel never sugar coated anything at any point on how challenging this would be, he wasn't one of those docs to just keep silent about things, he actually advised on how incredibly hard it would be on all of us. You see lots of folks like to think of this type of surgery as a end all be all "fix" and as much as we wish/hope for that as well...we knew better and Dr. E made sure we were understanding. I remember him vividly telling us that "you don't want to have a liver transplant, that if there was a way to avoid it they would but in doing so you trade one life for another". We at one point pressed on about this "trading one life for another", and luckily for us Dr. E kept true to who he is as a surgeon and a person...he went on to explain for starters the very risky surgery, the extremely hard recovery, and the new life on anti-rejection medication. The main stress was on these anti-rejection meds, these can be worse than all that we needed to go through. Hearing about medications causing cancer, liver damage/failure, and death as a result of it...I will admit it was so hard to comprehend how one can go through all this hardship, pain, stresses and than have to be on medications that can cause just as bad a situation than the unfortunate one Dylan was born with....seemed cruel, unusual, and I think its fair to say it just didn't register in our brains properly. But like anything else in most people's lives, how does one truly understand or know what its like unless you walk that walk. We had no choice but to almost turn a blind eye to this information as we truly couldn't relate to it at the time. As you know Dylan and I made it through surgery day, had some rough ups and downs in the hospital but none the less we were in and out of the hospital in what I would consider an amazingly short time frame...especially given the unbelievably complex surgery such as we both had. This brings us to the last 365 days of our lives.
Over the course of the first few months we actively did everything in our power to get back to a sense of normalcy. I think we longed for a less eventful life; one with less doctor visits, lab pokes, and more time to feel like every other "normal" family. These first few months were extremely difficult, constantly heading back to Lucile Packard for follow up visits and adjustment of medications. Not everything has gone as planned or maybe its best to say not everything has gone as we hoped for. We unfortunately now truly understand what Dr. E and the other docs were talking about...again, unless you live it, you just can't relate to it and even though we were living the life we still couldn't grasp what we were in for. Dylan has spent the better part of this past year in and out of doctor offices, labs, and hospitals. His medications have been altered so many times we have lost count. The only way to truly understand and grasp what's he's gone through is to take a quick snap shot into his life over the last year.
- 4 Separate Hospital Stays
- 2 Liver Biopsies
- 1 MRI
- 1 MRA
- 2 CT Scans
- 10+ Ultrasounds
- 3 Emergency Room Visits
- 17 Days In-Patient
- 10 In-Clinic IV Infusions
- 14+ Urgent Care Clinic Appointments
- 30+ Transplant Clinic Appointments
- 100+ Lab Draws
- 2,500+ Doses of Medications
The life we had longed for Dylan, we still do. It's not our life and its simpler means we seek for ourselves but rather taking a look at what this little boy has gone through and realize at some point and on some level...the tides have to turn. We can only hope and pray that this challenging life we all live will slowly fade with time. We do the best we can and with that we have to continue to press on for Dylan. We know that Dylan will forever live a "different" life surrounded by medications, doctors, fears of side effects to the meds, and the wonderful/special place that Lucile Packard Children's Hospital is. This is now a realized realization and one that is a tough pill to swallow but we are fortunate that we have a place we can trust, a place that will continue to care for Dylan when the tough gets even tougher.
Thank you to the surgeons, doctors, caregivers, family, friends, business associates, and perfect strangers whom have banded together in unity for our son. To those who have written us emails, commented on the site, and selflessly donated money to our family during this continued extremely difficult time of our lives....there are no words that give enough thanks; we truly Thank You from the bottom of our hearts. This is a lifelong battle that has not been the easiest life to live but I couldn't imagine it being any other way, as the alternative that others have been dealt is one that I'm not willing to face. Please keep Dylan in your prayers, keep good feelings towards him, as this last year has proven to us that in an instant it can all change.