In the past 5-6 years we have consistently written a lot about Dylan, his roller coaster labs, and us feeling that something was amiss and that the underlining culprit has yet to be figured out.  Amber and I have gone in circles with Dylan’s medical professionals and it has always been – to no fault of their own – no one thing to pinpoint what’s going on. The issue is he will have great labs, and then bad labs, then the next set of labs will come down and/or be good labs again.  In addition Dylan has had this odd rash like look on his face, although he is a teenager (which sounds odd to say) and zits/pimples is expected, this doesn’t represent as typical “teen zits”.

Over the course of the last year or so, we have pushed for autoimmune testing.  Which Dylan completed and his markers all came back within “normal range”. But yet again, Dylan had bad labs, we tested again and his bilirubin was up (both his direct and indirect but it’s his total bilirubin that is alarming), we tested yet again and it was even higher…this is completely abnormal for Dylan, all through his life (ever since his post first surgery at 9 weeks old) he has had rock solid bilirubin; even during Cirrhosis/End Stage Liver Disease.   For those that don’t know what bilirubin is, “bilirubin is formed by the breakdown of red blood cells in the body”. High levels are an indicator of liver damage and higher than normal direct bilirubin indicates the liver isn’t clearing the bilirubin properly. Although Dylan’s direct bilirubin is elevated, it’s the total bilirubin that has us concerned – as this can indicate additional issues going on.

We contacted Dr. Edward Rich, Dylan’s GI doc since 6 weeks old.  He is not only responsive to us but early on he gave us his personal cell phone (which we DO NOT abuse) but he is someone we regard as family to us – he cares deeply about Dylan and is always there for us in helping trying to figure out something that doesn’t have a clear cut path.  After Amber did a bunch of research and reading medical journals after medical journals, she requested Dr. Rich order some more tests. This time he ordered a Haptoglobin test – which is a protein marker to test for Hemolytic Anemia. This test has a range of 30-220 and Dylan’s came back at 15: this result indicates he has abnormal Hemolysis taking place.  Hemolysis is the breakdown of red blood cells and although this is normal for everybody, his is happening faster than normal – which is destroying red blood cells faster than his bone marrow can produce. Hemolytic Anemia can take place in tissue/organ or in the bloodstream. This answers why his total bilirubin is high and his direct isn’t concerning - excess broken down red blood cells bind with bilirubin, hence more red blood cells = higher bilirubin.

Now that we know he has Hemolytic Anemia, this may answer why he has constant stomach pains, cold urticaria, headaches/dizziness, and as of recently chest pains too.  We need to figure out if this is coming from his tissues/organs or from his bloodstream. In addition, it’s sadly possible that we could be dealing with an even scarier possibility, that this is PTLD (Posttransplant Lymphoproliferative Disorder, which is cancer), which is presenting as Hemolytic Anemia.  Although we don’t know where this is happening, we suspect it's happening in his liver and its drug induced, which would attribute to his fluctuating liver labs. You see, being that Dylan is on an immunosuppressive medicine (Tacrolimus aka Prograf), it’s possible albeit extremely rare that anti-rejection drug(s) can cause Hemolytic Anemia.  The fix, if this is the reason, is to switch his anti-rejection med. The idea of switching is a terrifying thought as we attempted to switch Dylan off Prograf to Rapamune - literally 6 years ago to the month. That process ended badly and put him in a downward spiral for nearly 2 years of chaos. After speaking to Dr. Rich about this, he said although it’s possible for drug induced Hemolytic Anemia in transplant patients, he has personally never seen it.  This is nerve racking and hopefully not wishful thinking on our end, as its the best case scenario we could ask for.

We contacted Stanford and they agreed that something is amiss and are putting in a referral to Stanford Hematology/Oncology Dept.  Our next weeks/months are going to be incredibly stressful and we’re doing the best we can to be as positive as possible. This is made even more complicated as we now care for my 96 year old grandmother, who is requiring more and more care as days go on.  Although at times it’s hard to not be flustered and/or jaded - it just seems like never ending hurdles - and it makes us incredibly sad for Dylan and how hard this is for him.

Thank you to all whom still follow Dylan and our lives, we truly appreciate it.

-Noah and Amber

Its that time of year again...which is always a great reminder for us to give thanks and be appreciative - although not everything is "perfect", we know all to well how much worse things can always be. 

I vividly recall when Dylan was born, before we knew anything was wrong, just how stressed I felt.  I used to say to folks that "nobody gave me a book on how to be a parent and I'm just doing the best I can", I changed this to "nobody gave me a book on how to raise a chronically ill child", as it became more fitting.  As time has passed and with all the up's and down's in this life - one thing has remained constant and that's Dylan's resolve.  He has always been a trooper through it all, he has never given up, he has never refused to continue marching forward, and he has remained steadfast on his pursuit of being just another "normal kid".  

Dylan over the course of the next month or so will be redoing some testing at Stanford, which may lead to more testing (depending on results).  Although its frustrating we didn't get the answers or clarity we were hoping for with the last test a few months back, we're grateful there was not further negative news based on what they could see from those results. 

Often its during the most difficult times that we reflect just how much it all means to be offered or lent a helping hand, to get a few words of encouragement, and/or those whom truly show there true colors of who they are.  But through that, we're always reminding ourselves that without the doctors who cared for, operated on, and got Dylan to this point - that this yearly anniversary wouldn't be possible.  They say "it takes an army to raise a child" but what they don't mention is what it takes to raise a chronically ill child from birth. I know parenting is hard for most everyone, we are no exception to this but raising a child with extra ordinary circumstances - whatever that may be - does take a toll on everyone involved but we feel so fortunate/blessed for the love and support of those whom have gone out of their way for Dylan and us.

A few quotes that seemed very fitting...

"Your living is determined not so much by what life brings to you as by the attitude you bring to life, not so much by what happens to you as by the way your mind looks at what happens."
-Khalil Gibran

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
-Edwin Hubbell Chapin


​Happy 8 year Transplant Anniversary to Dylan, to us, this date is forever in his honor!


-Noah

In November, Dylan suddenly woke up vomiting and soon developed a 102* fever but had not other signs of being "sick", this wasn't the flu or cold.  He had multiple sets of labs but his liver enzymes showed they were in normal range except for his bilirubin was on the higher end for him - in the past, only time this scenario had happened was when he had Ascending Cholangitis (which he had often pre-transpant, as its a bacterial infection of the biliary area) in addition to this his WBC was indicating he had a major bacterial infection brewing.  We were convinced he had Cholangitis and wanting to avoid the petri dish of the hospital, we were able to do 2 doses of IV antibiotics 2 separate days at a outpatient  treatment center.

First set of follow up labs were good, then the next set had his liver enzymes elevated again - back onto the roller coaster we went and again with no rhyme or reason to it.  This roller coaster of hepatitis his been ongoing, we have mentioned it over and over on here.  In addition, Dylan has been suffering from severe stomach pains when he eats, which has also been ongoing. 

Dylan had an ultrasound at Kaiser - and no issues were located or notated.  Being as this has been ongoing, we pushed for more answers, which finally had gotten to a point where the powers that be at Stanford were finally willing to attempt to see if they could track down the source of this.  

Amber and I's initial thoughts over the years were:  1- Eo's are rampant in his body and perhaps this is causing issues in his liver/gut making his stomach hurt and liver enzymes to go haywire with no other obvious symptoms.  2- Other thought was perhaps he has a stricture at his bile duct and its causing pooling.  3- Last thought and one we've gravitated to more and more as of lately is that his connection from his transplant (roux-limb) is either stretched or kinked - which could just be from growing but if this was the case, it would require a revision surgery to correct it.  At this point, we just want to know what's causing it and how to fix it - as the constant up and down of liver labs (hepatitis) is not good for long term and at this point its been going on for a very long time.

Clearly its been a year since I've done an update, its not for lack of wanting to - seems in the past I've only done trying posts, when we are battling this or that and I wanted to do an uplifting post and a progress of where things were at but just never actually got around to finishing it and posting it up.  Which I regret but part of it or likely most of it - I'm sure - is I didn't want to jinx ourselves and the other part was just focusing on the here and now.  I promise I will do more updates in the future, as I feel its important to reflect on the hard times and the easier times. 

Over the last year, lots has transpired but mainly just daily living and doing our best to get by and be as productive with our time as possible.  Dylan turned 12 years old (about to be 13 in June, which is just hard to believe that we're going to have a teenager).  His sister turned 6 but thinks she's going on 15 - ugh but that's a whole other story, ha ha.

Dylan got to attend transplant camp again this past year and actually said he had "fun" and even made a mention if someday he'll be able to be a counselor to kids like him.  Not sure if anyone recalls but this is a big step, him being away from us and actually stating he had a good time - yes he still missed us but I think he had less anxiety and more fun this go around. 

Christmas was good to him, he got what he wanted and begged for.  We got him the new Xbox One S.  His last game system he got was while he was in the hospital recovering after transplant, of which it was from a group of friends that bought him an Xbox 360...so this was a big deal, big for us as it was expensive and big accomplishment that he's come this far and had outgrew the old generation game system.  It was bittersweet to be honest. In addition, being it was the holiday season and Dylan was in good health, we took the family to "A Christmas Story" musical in San Francisco, it was just nice to get out and be as a family and enjoy this time of year and most importantly not be in a hospital or sick for once.  

Winter is typically brutal on Dylan, between asthma and sickness...but honestly this past year was the best year Dylan had ever had in regards to sickness and being hospitalized.  Although he had his bouts like anyone else, it was just that - like anyone else.  I gauge how he did by how much money we spend on medical co-pays and last year was the least out of pocket we have ever spent in 12 years...I can only hope this past year's trend continues.  As I write this, his sister just got over 4 days of that nasty flu that's going around and Dylan to date hasn't gotten it and we're hoping it skips him all together.  Its crazy how the normal things like colds and the flu are what keep us regimented and always on high alert.  Being immunosuppressed requires this though, you can never let your guard fully down. 

2 days ago Dylan was at Stanford for his clinic checkup appointment.  His labs were spot on and being that they've been so stable over the course of the last 6 months, they've dropped his Actigal medication completely (which he has been on this med for 12 years of his life) and they've moved his lab draws from every 4-6 weeks to every 3 months - also moved his in office visit at Stanford to once yearly!  This is a huge milestone and its one we welcome for him. I knew someday we would get here but when you're in the trenches and trying to dig your way out, its hard to focus on when that day will/might come.  Although Dylan will never be completely cured, med free, or out of the woods when it comes to his condition, we appreciate this pinnacle time in his life - where he's just starting to come into his own, that he has less stress associated with persistent lab draws, Dr. visits, and hospitalization. 

We have never looked to erase Dylan's past and what he has endured and overcome but we are certainly grateful for this past year and this weeks good news from his transplant team...we can only hope it continues for the foreseeable future - he deserves it, especially as today marks his 7 year Transplant Anniversary. 

-Noah

​
Slideshow:
***The images below are in a slideshow format, you can hit the "Play" button on main image or click on individual images to have them enlarge.  To get more images put your cursor over the last picture shown on the right, it will scroll to more images***

It's official, Dylan has officially gone longer post-transplant vs. his pre-transplant life.  

Although he always has challenges and big swings of ups/downs, one thing we know for sure is how hard Dylan tries to always give his best shot that he knows how to give.  It's not easy, imagine being in his skin...he knows nothing other than fighting and being afraid of not only  what every normal kid faces but his is coupled with the reality of his situation that can change on a whim (I think this is probably the hardest for any of us, so unpredictable).

Today marks 6 years since we made our trek to this side of things.  I remember this day like it was yesterday, and to be honest its mind boggling to think that 6 years has already passed.  I will say that with passing time comes reflection, with reflection comes appreciation, with appreciation comes gratitude...and I feel very gracious and blessed for all we have overcome thus far and how much others have helped us be here today.  I think back often on right before this day, all the good people whom surrounded us, did fundraisers for us, offered a lending hand, or simply a prayer to keep us in good spirits.  I haven't and will never forget what everyone has done for our family.  In our time of need, business professionals, personal friends, and perfect strangers banded together around a common purpose; to see Dylan have the opportunity to live some form of normalcy.   

Its been a whirlwind, its been enlightening, its been beyond challenging, its come with good times as well as bad, but in the end....its never broken us as a family.  Today I give thanks, just having the ability to write something positive and congratulate Dylan on being on this side of life, its worth all the pain that has come before it.

-Noah

 Our lead up to this day started 36 hours prior to this photo...anyone who has done a colon prep knows the process isn't glamorous and/or enjoyable.  Unfortunately for Dylan he was doing both ends of his body, he was prepping for a upper Endoscopy, lower colonoscopy, and both being with biopsies throughout.

We left our house by 5:45 am, traffic was typical so we didn't end up at Kaiser Oakland until 7:30 am, which was plenty of time given we didn't need to be there until 8 am (1 hour prior to procedure time).  As 8:30 am rolled around, here comes Dr. Rich strolling through, he stopped and asked why we were still sitting in the waiting room.  Of course our answer is, "perhaps you should ask that of them".  Dylan was swiftly taken back and prepped for "The Dylan Way" of going to sleep.  You see in the past, when Dylan was really young, he was traumatized by gas induction for another Endoscopy, so we don't do gas...he does it his way, which is harder but it includes: oral versed, IV, and sleepy meds.  This is something we chat with anesthesia with prior to his appointment, like I did this time and they were very understanding and we left our conversation on the same page.  But low an behold when we arrive, they front desk person, back office nurses, and everyone in-between all have no clue.  I've given up on being frustrated about it, as its just simple...its going to be done this way or its not getting done.  If Dylan wants to endure an IV vs. breathing medicine that makes you unconscious, then so be it...he's earned that right to go out how he pleases. 

Things took longer than expected but Amber made her  way back with Dylan (they don't allow siblings so I stayed with Tegan in the waiting area).  Amber spoke to both the Anesthesiologists and things were a go.  The only thing left for us was to wait until they were done and hope all was uneventful.  I know in the back of our mind, we know things typically aren't just so cut and dry and that easy going.  We were about to find out that this day was no exception.

After a little over 1.25 hrs, Dr. Rich and the Anesthesiologists came and talked to us in the waiting room.  At first notice I thought it was odd that the male Anesthesiologist had blood on his pants but I was more interested in what Dr. Rich had to say.  It was in this moment we could tell by his face mannerisms that he was surprised in what he saw.  

He was talking about how is Esophagus looked decent but he could see pinkish rings in it.  He said he made his way through his stomach and out to his duodenum (this is the sharp turn off the stomach that connects to the small intestine), he said the outlet of his stomach was thickened, he said the Duodenum was thickened and he hard a really hard time, almost impossible time, getting through it.  He then mentioned his colon is thickened too.  This is about the time the female Anesthesiologist mentioned that Dylan had a little complication during the procedure.  She mentioned that Dylan started throwing up, she had to do an emergency intubation and she didn't think he aspirated anything but couldn't be 100% sure, that we needed to watch him very closely over the next 24-48 hrs for signs of wheezing, difficulty breathing, fever (Pneumonia is the fear from this).  As we were trying to figure out why or how this happened, she then mentioned that his IV blew as well and they had to place a new one in his other hand.  Dr. Rich then advised he wants a Barium Study done on Dylan, to take a closer look on how his food is processing through his GI tract.  All this was just too much to take in, literally nothing had gone smoothly from the sounds of it. 

It was surprising to hear these things, shocking actually.  But mostly, this is what Amber and I have been fighting about for Dylan.  Every time his labs go haywire, liver numbers jump up, EOS showing as high as they are...we know its an immune response, which just means inflammation.  I have asked his doctors over and over and made statements to the affect of, "if his numbers jump up, we know this affects his organ/tissues, and this constant back and forth has to have a negative effect".  They always respond with the same thing, "little bumps like this don't cause long term damage".

I literally can't even keep my mind clear, I'm so upset, mostly I'm hurt for Dylan.  Thickening of tissues, especially in your GI tract is never a good thing and for the most part its NOT reversible.  Terms like Chron's was tossed into our conversation, Eosinophilia, non specific tissue inflammation, etc...the bottom line is this, although we certainly hope Dylan doesn't have another terrible disease like Chron's, him being diagnosed with Eosinophilia is borderline very similar in maintenance....it means repeat procedures like this for life and lifelong need to be on steroids.

We have been pleading and begging with Dylan's caregivers to do more, to listen to our concern's on his constant state of up/down labs, and his always high state of Eosinophils in his system.  I understand Dylan isn't bed ridden and dieing in the hospital but dare I say brushing off his conditions, symptoms, concerns has now only complicated things and you don't get to undo that, no sorry's can fix it. 

​-Noah

It obvious we have not posted, not even for Dylan’s 5 year transplant anniversary back in February.  I suppose it was on purpose, like so many times before.  It’s ironic that when things are going decent for the moment, how you’ll do anything to keep that trend…even to the point of not doing something so you don’t “jinx it”.  Sad that’s how we view things, holding on to a glimmer of imaginary or hypothetical hope that really doesn’t amount to anything; this is what we do at times and this was one of them.

So I guess we might as well just jump right into this past week(s).  We’ve spent the last 5 days in turmoil, in panic, in fear of what was to become of our upcoming Tuesday morning (day after labs were to be repeated).  Rewinding to 2 weeks ago to Dylan’s labs, they were great!  With exception of his Eosinophils (these are a disease fighting white blood cell, it’s also a marker they look at in allergic people as well), well they were at 24% (you and me typically run 0-2%).  This past Thursday saw Dylan at Stanford for a routine check-up, they opted to do labs because he was there and just to be on the safe side.

Friday morning I got a call from a transplant coordinator (our regular one was out) that Dylan’s labs were drastically changed/high (100%’s over what they were for most of them).  They wanted him immediately setup for a liver biopsy, repeat labs at the hospital the following day and to prepare for biopsy on Monday.  After having a few conversations they also wanted to add in an upper Endoscopy at the same time (2 different doctors to coordinate for this) and now they needed to move the appointment to Wednesday.  Yes, this is a lot to take in…yes, it’s like being kicked in the face and then adding salt into the wound.  But we don’t get the option of just complaining and groveling in our own misery, we have to pick ourselves up by our boot straps and focus on what needs to be done for Dylan.  The kicker was the timing, as Dylan is graduating from 5th grade on that Thursday and would of missed his elementary school graduation, which he’s also transferring school districts and leaving behind his friends…it would be a big deal, not to mention he’s already missed so many things in his life.

I had expressed to the coordinator that this has become a sporadic but all too common theme with the no warning/roller coaster labs out of nowhere.  Literally a week prior, the labs were spot on perfect (again except the Eosinophils) and at this last Stanford visit on Thursday had finally advised we could go 6 months between visits and now here we are, honestly not even 24 hrs later and it’s a complete reversal.  In talking more with her, I mentioned that repeating labs the next day would not be advised, it will only show the same and I pressed her to allow us to wait until Monday to repeat them, as I know from the past and numbers like he has that no change can be had in less than 24 hrs based on where he was at.  I also mentioned we (Amber and I) really feel that after 3 biopsy’s, countless years of steroids to treat the rejection that has never been found, that we are back talking about taking these same steps again and I just can’t wrap my head around this.  That I feel we need to all take a step back and focus on Dylan, not statistics of what is normal with others but just Dylan.  I wanted to talk about the correlation between his always high Eosinophils and the prospect of the Interleukin-5 (IL-5) IVIG treatment that we have been waiting on, counting on, holding onto to hope for nearly 1.5 years now…we really feel that this is intertwined, if not 100% completely what’s causing all this chaos.  Although his transplant and anti-rejection med is the cause for the issues, we want to get to a point where we can understand that this new life, one that started on 02.07.2011, and start treating the long term byproduct of where we are…ultimately we want to treat the effects of this lifelong situation. 

Our weekend was arduous, was nerve racking, it was like so many that has come over the course of darn near 11 years thus far.  Monday saw us at the lab bright and early as a family and Tegan asking why Dylan needed to get poked again and if it would hurt him.  We always tell her that its necessary in his life to ensure he is safe and healthy.  I know she doesn’t quite get it, at times I myself feel like I need a poke to wake up from this life, not that I wish it to be any other way but just for it to be easier for him.  For the remainder of Monday, Amber checked her cell phone for incoming labs no less than 100’s of times.  They wouldn’t come through until about 10pm at night.  With one eye open and the other shut, she would pause prior to clicking on each individual test, we check the least important ones first before moving onto the LFT’s (liver function tests)…1 by 1, each one was reduced and by a lot.  Although we breathed a sigh of relief, it really was to save the torment this would have had on Dylan.  Even as adults it’s hard to understand and is always emotionally charged.

The following day I spoke to the coordinator again, she was shocked (again she’s not our usual point of contact) that his labs had taken such a drastic turn; she even thanked me for pressing to hold off on labs until Monday.  I asked her to speak to Dylan’s doctor to get his input and start a dialogue with the allergy department to see if they can all come together and find a solution, hopefully start the process of moving forward for the IL-5 IVIG treatments.  She advised they would and also agreed to continue the Endoscopy process as we feel this is another item that needs to be addressed to confirm more allergy issues through Dylan’s body.   Amber and I are convinced Dylan is riddled with Eosinophils in his esophagus, stomach, organs.  Although we don’t want Dylan to have to go through another procedure, everyone feels it’s important to know more about what’s going on in his anatomy.  

We opted for the first time in our lives to not tell Dylan about all that was going on, although I think deep down he had an idea something was a bit off.  We have never done this before but after hearing him talk about his graduation day and what not, we just couldn’t bring ourselves to upset him because what if Monday labs were better and this was all called off for now?  That is what we held onto, we held onto it for the sake of him and I'm thankful we did.

As Tuesday night came to an end, we were trying to be positive and just keep moving forward…almost as if none of this had transpired over the course of the past 5 days.   While Amber was getting Dylan ready for bed and going over his school work she found this note, one might even say a poem.

I'll spare the long winded "this has been the longest" since we've updated, although it really has...crazy to think it's been 6 month's since last update.  Its really not for a lack of updates but really wanted to do a mass update once we had more info on a few things.

​Over this past summer Dylan turned 10 years old!  Which to me is crazy to think he is now double digits...time sure seems to pass us by fast.

Also this summer, Dylan got to go to a very special camp.  Its a camp that is put on by Stanford Children's Hospital.  Its deemed "Transplant Camp" and its for all the kids like Dylan whom have had solid organ transplants and need extra attention in regards to their camp experience, albeit food allergies, meds, and/or other special needs.  Its held at St. Dorothy's Rest in Camp Meeker California, which is part of the Episcopal Diocese of California.  It was the first time Dylan was ever away from us, he never even made it for a sleepover all night at a friends house 2 doors away, and as you can imagine he was pretty upset and didn't want to be away from us for 6 days.  In the end it was an amazing experience for him, even though it took him a few months to fully realize it..ha ha.

The nice thing about him going away this past summer was once he got back to school this year, which now he's a 5th grader and in his final year of elementary school (and when did that happen!  Ugh, its goes so quickly), he had less drama going to his 5th grade camp outing...even though it was only for 3 days and 2 nights.  Seemed like a piece of cake but it was made a bit more complex because the organization couldn't/wouldn't be responsible for Dylan's allergies and/or meds.  So we had 2 options: 1- he would be discluded from camp with his friends or 2- we would have to provide him with all his meals pre-prepared.  So of course we did what any parent would do, we made a ton of food so he could feel "normal" like the rest of his friends.  So he was on his way with an igloo cooler packed with food and got to have the experience of being out at the Marin Headlands alongside his friends. 

Throughout the last 6 months, there has been ups and downs, Dr. visits, an MRI, Pneumonia, tested EBV positive, etc.  Its kind of a never ending cycle as we've mentioned over and over throughout the years. 

But one of the more breaking news on our end is...over the past week we've been informed that Dylan has received FDA approval for IVIG IL-5 treatments.  To rehash this a bit, here is what I mentioned previously in my last post:
​

"The treatment is called Intravenous Immunoglobulin (IVIG, more specifically targeting IL-5) infusions.    In short, they will be injecting IG plasma that would be specific to killing off Dylan’s Eos’s, where as in other forms of this treatment it’s used for supplementation/replacement therapy.  The thought is, every 3-4 weeks Dylan would have to go to the hospital and have these treatments (they take 2-4 hrs).  The desired outcome is to be methodical in lowering (killing off) the current Eos’s in his blood to that of a normal person (6% and under)…in doing so, hopefully it will settle his system down and he can go about his life a bit less susceptible to normal elements, every cold turning into Pneumonia, or causing a bump in his labs…which in turn causes inflammation in his liver."  

​
We don't have a set time table or date to start any of this yet, as of right now they're trying to figure out protocol for Dylan (remember this isn't a drug used over here or even for this condition he has, so  therefore he is more or less the baseline when it comes to this).  It's a bit to take in, we worry about what if it doesn't work, or worse...what if it has a negative affect.  But mostly, we have lots of hope. 

When I came about doing my son's website and furthermore the journal entries that I personally do I never really thought about how it may impact others. I often times refrain from doing more journal entries b/c I'm not looking for sympathy from anyone, I'm not asking for a handout, and mostly I'm not trying to place our burden (our pain, our hardships, our scenario) on anyone...All to often folks read "into" what some write/say and I never wish to portray ourselves that way. I simply put...am putting my thoughts on his journal b/c its a good way for me to clear my head, to keep from going insane, and/or worse. I do all too often not take that step these days b/c I just don't want to have folks look at Dylan poorly based on my views or how I see the world (most often).

We do the best we can with what we got...we aren't perfect and nothing about this life has gone perfectly but its our life and I hope by sharing it, others see it could be worse....you could be in my shoes (and on the flip side, I know our scenario could always be much worse as well...its a two way street and this life has shown me that). I'm fortunate for what we got but that doesn't make it any easier...its still tough.

-Noah
​

It’s been extra-long since an update…it has also been filled with lots of up’s and down’s and we wanted to wait it out until we had more info.  So much has transpired over the course of these last 3 months, I truly can’t even recall it all.  It has seen countless visits to Kaiser, to Stanford Children’s, and of course the usual in-betweens.

At the beginning of the year we mentioned about Dylan’s need for Psychology intervention, discussing further with Immunology Dept, and just trying to get this never ending roller coaster of up/down labs to come to some form of normalcy. 

As of today, nothing new in regards to psychological intervention has been figured out.  Kaiser doesn’t have anything for him and Stanford is so far away that it would require taking random full days off work and school…it’s just not really feasible to travel hrs on end to talk to someone for less than an hour.  Dylan missing school is more of a concern as he needs all the assistance he can get.  We are still actively trying to figure something out for him though…just don’t know what yet.

We were fortunate enough to get in with world renowned Immunologist Dr.  Kari Nadeau MD, PhD.  She is head of the Immunology Dept at Stanford Children’s and director of the Sean Parker Center for Allergy Research at Stanford.  She is someone whom we have wanted to talk with again for a very long time.  Back in 2012 we met with Dr. Nadeau briefly about Dylan but she felt immunology and how it relates to liver transplantation wasn’t quite in sync at that time.  Amber and I have stated over and over, as well as many times on here, that we believe Dylan’s erratic labs and his constantly high Eosinophils were either relating to an Autoimmune issue or something that needed further looking into from Immunology, as those are allergy marker cells.  It’s always been an ongoing issue with him.  They’d do a liver biopsy and never see rejection cells but they always see a ton of Eos's, which isn’t normal.  Back then in 2012, Dr. Nadeau didn’t feel there was a direct correlation…but now flash forward to 2015 and things have changed. 

We have had multiple conversations with all of Dylan’s Dr’s, as well as them all having a meeting together to discuss Dylan’s predicament.   They all have agreed to look further into this being Dylan’s immune system that’s causing flocculation’s in his liver.  Dr. Nadeau also informed us that through these past few years a lot of advancements in medications and research has been made overseas.  She informed us that she, like us, believes that Dylan’s system is constantly irritated and revved up due to his extremely high Eosinophils.  If they can reduce his Eos's, she’s confident she can make most/if not all of his anaphylaxis go away.  The hope is that in reducing his highly allergic cells from constantly being on guard, that it will calm down the rest of his system, and thus calming down the inflammation that seems to come and go in his liver.

The treatment is called Intravenous Immunoglobulin (IVIG, more specifically targeting IL-5) infusions.    In short, they will be injecting IG plasma that would be specific to killing off Dylan’s Eos’s, where as in other forms of this treatment it’s used for supplementation/replacement therapy.  The thought is, every 3-4 weeks Dylan would have to go to the hospital and have these treatments (they take 2-4 hrs).  The desired outcome is to be methodical in lowering (killing off) the current Eos’s in his blood to that of a normal person (6% and under)…in doing so, hopefully it will settle his system down and he can go about his life a bit less susceptible to normal elements, every cold turning into Pneumonia, or causing a bump in his labs…which in turn causes inflammation in his liver. 

There are a few downsides though, often IVIG treatments are for a very long time (at min years) and often up to the rest of your life.  The other being, this process of what they want to do to Dylan isn’t approved in the US, although it’s used for different conditions, it’s not approved for use of Eosinophilia.  Dr. Nadeau is contacting the FDA for approval to use the medication/procedure over here for Dylan.  We are currently awaiting word back on if they will allow this for him.

We have lots of hope but at same time lots of worry as well.  The hope of course is…it all works out as it should on paper.  The worry/fear is, what if it doesn’t…how do they undo it.  What if his body goes on attack mode and things get worse and we end up on a destructive path that nobody has firsthand experience with.  The hopeful side of us has to still be diligent about asking the pertinent questions.   But we are bracing for a hard summer, hopefully one that sees positive results.

Thanks for keeping up on Dylan; I know he appreciates it as well.  Every so often I catch him on his computer looking at his site and reading through what we’ve written.  Hard to believe in less than a month our little man is turning 10 years old.  Wish us luck as we embark on this next chapter of our lives.

-Noah

We always say, it’s amazing another year has passed us by.  This year has been no exception to that as well.  Hard to believe it has been 4 years.  I wish I could say it has been trouble free but at the same time it could always be worse.

As of today we are still awaiting authorization for Dylan from the Psychology and Immunology Department at Stanford.  In addition we are still waiting further testing on Dylan for his academics in school and trying to come up with a plan that he can thrive from, as opposed to consistently falling backwards.

Dylan is currently undergoing treatment for Pneumonia, which is the 3rd time in the last 12 months.  It's a bit exhausting and troublesome that every single time he gets a cold, he ends up with Pneumonia (especially since it can cause scarring).  

To make this not dragged out and winded, what I can say is...There isn't a day that goes by that I'm not thankful, grateful for another day, or blessed to call this difficult life our own.

Our scars are reminders of our resolve as well as strength to continue to charge forward and never give up on the fight and hope for better days.

Thank you all for support and love shown to our family.

-Noah