Friday, April 14, 2017

Liver biopsy and then some

2 weeks ago I had the liver biopsy for the NCI MATCH trial. All in all I was told they took 8 core needle samples. I was "told" this because I truly can't recall the procedure. I remember checking in and being incredibly anxious. I was super fearful of the procedure because my last biopsy in 2010 was not fun and I still to this day remember very vividly how it went and how I violently trembled on the procedure table. I remember everything and I feel like I felt everything, despite any meds they may have given me back then. So of course I researched how the liver procedure would go and of course it scared the crap out of me. They numb the area and then push the needle through with the help of a CT scan to guide them. They have to push through the liver capsule and there's supposed to be a "pop" as the needle breaks through. This right here - is what freaked me the fuck out. So the entire time I'm sitting in pre-op, I'm quite, anxious and teary eyed.

Let me talk a little bit about how peculiar pre-op was. The nurses that prepped me were incredibly sweet. One of them took her first look at me and just came over and embraced me. She could read the worry and fear all over my face. She whispered in my ear and told me it was going to be OK. That I was going to be OK. She stepped back, held my shoulders and smiled at me. Then she continued with taking my history, entering vitals, etc. She asked me what my favorite color was, told us about her two sons, one of which is in medical school, left and came back with a handwritten note and a handmade angel (in my favorite color). She told us the doctor would be stopping by soon.

And he did. The interventional radiologist came in just a few minutes later. He was a tall man, medium-blonde hair, medium-to-large build. He was wearing a magenta (yes magenta) button down shirt with the collar open (quite open), blue jeans, cowboy boots and notably lacked the traditional, white lab coat. He set his perrier down on the table and sat -- not casually leaned or a half-cheek semi-sit, no - a full on seat, with both legs hanging off - and his bottom on - the end of my hospital bed. He covered the procedure, made sure I understood what I was there for and assured me that they would have good meds for me. So good in fact, he said, I very well may wake up with a tattoo on my ass and not even know it. But it will be fine. He's a pro.

After he answered my questions, he left and the nurse that gave me the angel came back. She grabbed my and Mike's hands, asked us to close the circle and she said a prayer for me. It made me cry. Once finished, she hugged me again and left. And just when I didn't think things could go any more differently than I what I was accustomed to - shortly thereafter - the nurse who was going to be with me during the procedure came to greet me. Her name was Glenda.

It was official, I thought. I was in OZ. And not at the beginning of the yellow brick road. No. I was in the Emerald City. The nurses were the people of the city and the great and powerful OZ himself wore a magenta shirt and Glenda the Good Witch - she was the one with the "good meds."

They wheeled me back to the procedure room. Mike stayed with me as long as they allowed. The CT Tech - a larger hispanic man who spoke really quickly and was seemingly irritated by whomever kept ringing the procedure room phone with questions - told self-deprecating jokes in an effort to calm me down and break the nervous tension that was rolling off of me. No such luck munchkin. Your time is better spent peering through the square in the large emerald doors to the city.

After about 30 minutes of bad jokes, it was time to move me onto the CT scanner table. It was the gatekeeper's turn to drive. The room was all set. He adjusted my position in and out of the scanner, assessing position, drawing on my ribcage and marking areas that indicate "do not cross." Glenda hooked up oxygen and secured some straps around my hips and legs so I didn't roll off the table. When it was all set, she leaned over my ear and whispered "Ok, I'm starting the good meds now." I remember feeling them hit - similar to that buzzed feeling you notice when you have a few drinks - you recognize the relaxation and distortion. And that's it. I don't remember what happened next.

My next memory of the procedure is waking up to Glenda telling me "Ok sweetie, we're all done." I replied with, "What?" And then my conscience mind registered the pain in my side. We weren't in OZ anymore. I started shaking - either from the withdraw of the meds or the pain or both but all I could say was it hurts, it hurts, it hurts. They shimmy me back onto the CT table and do another quick scan to make sure that it indeed I just hurt and aren't - in fact - internally bleeding. Nope. It just hurts.

I'm back in the same spot in the pre-op room - which is now my recovery room. I'm not sure how long I was there, how long I was out. I remember Glenda floating back in to hand me a norco because I kept saying it hurt. After that, I most likely passed out again for a bit more. I'm not sure. When it was time to leave, they wheeled me out to our truck and I was almost motion sick from the ride to the curb. It was an hour and a half ride home. Glenda sent me with a puke bucket and bag, just in case. We only made it out of the hospital parking lot before I puked.

After about an hour Mike indulged me by stopping at Dairy Queen. I got a plain vanilla cone - and I managed to keep it down the rest of the ride home. Mike put me to bed, rested for a never-long-enough minute for himself, and at 5 pm went to pick up the boys. I got up when they got home. We managed dinner for them and bedtime. I managed to eat a bit more - some fruit, strawberries specifically. Once the kids were down, I stopped at the fridge, took a swig of orange juice and went to get ready for bed. After about 3 minutes of laying down in bed, I jump up, run to my sink - and puke. everything. Hence my vivid memories of strawberries and juice. I should had stopped at the berries.

I threw up one more time that night, kept nothing down. I turned out the light and figured I'd try again tomorrow. Tomorrow was better. I woke, ate, had coffee, water ... all was much better. I just felt super hungover - just all over icky from all the memory-erasing and pain-erasing meds they pumped through me during that brief procedure.

It's been two weeks now since the biopsy. Every day I felt a little bit better. Every day I felt more crap clear my body. I've tolerated a lingering side-ache however. It wasn't bothersome until two nights ago. I rolled to my left side in my sleep, my preferred side, and it felt like a bubble or something surfaced into my right rib-cage. It hurt. And was alarming. So I rolled back over flat, let the pain dissipate and went back to sleep. Some time during the night I did it again two more times, and again the pain woke me each time. At 6:30 AM I decided I would let Mike sleep until Cam came in the room as per usual, and once Mike was kinda awake - I'd tell him that I think we need to go to the ER.

So I did. And he asked, "It's that bad that you need the ER?" No. I tell him, "I thought about urgent care but they don't have a CT scanner so they're just going to refer me, so I figure going straight to the ER is the fastest way to resolve this and be back in time to get the boys from school." Yeah. Cuz that's how people who are dealing with this crazy kind of medical shit and who are also raising two very young children and who are also working full time - have to think when it comes to an ER visit. It's not about the pain - it's not about remedying the situation at all costs - it's about balance and negotiation. How can we take care of potential internal bleeding and still be back in time to be parents? Oh - and we should probably bring our computers with us because we know ER visits are minimum 4 hours with 3 of those hours usually spent idle in the treatment room. Might as well get some work done while we wait.

We check in at 9 am. They take me back right away. I change. They set an IV (painfully). They take some blood. The doc comes in to talk to me to get his understanding of what's going on. He taps on my back. He says OK. We'll get you set up for a scan. He leaves. They try to take more blood because something happened with the first sample during processing. It's even more painful than setting the IV. Finally I get called back for the scan. They wheel me over in the hospital bed - because again - no one is allowed to walk in a hospital. We get to the CT room and the tech tries to flush my IV to test it before he hooks me to the contrast injector machine. I nearly jump off the table. The saline push burned so bad it was like my fucking vein exploded in my hand. He tries again - still hurts. Tries again but slower ... still freaking hurts! He calls in the nurse. She tries it. STILL HURTS PEOPLE. I finally break and tell them listen - set another IV if you have to because this is painful. So they do. And it doesn't hurt nearly as much and pushing saline through it doesn't hurt any longer - it just tastes bad. My hand - on the other hand - feels like it was hit with a hammer.

Long story shortened - they scan me, we wait for results, we finally talk to the doc. There's a small sub capsular hematoma (bit of blood) in my liver, but that's most likely not causing the pain. There's also a mild to moderate pleural effusion around the base of my right lung, which most likely is the culprit. Especially because it feels the worst when I'm laying down and that side is up. The fluid can move around and can be painful as it does. Think of it like a level ... the air bubble always rises to the top. Well, that pocket of fluid between my lung and the lung lining, rises to the top when I lay on my left side. And what's the cause of the pleural effusion? Most likely mets he says. Mets in my lung that is irritating that delicate lining. Most likely not caused by the biopsy.

Well fuck.

That's what I get for asking to get scanned. The pleural effusion wasn't noted in February. It's been 3 months without "effective treatment" as my doctors would call it. If this little bit of scan is any indicator of what is to come during my next PET CT - which is supposed to happen in the next couple weeks - then I need to get my mind right and ready to receive some shitty news.

Do I believe the fluid is from new mets? I don't. I honestly believe it's from the biopsy. I believe they either nicked the lining or just the procedure itself irritated my liver which in turn irritated my lung because it's all in the same area. The fluid pocket is in the bottom, back portion of my right lung, centimeters away from where they took samples from my liver. I believe it's from the procedure. I could be completely wrong - but we'll see I guess.

Currently I'm waiting for the NCI MATCH central lab to finish processing my biopsy and assign me to the drug arm that matches the genomic mutation and correlating drug. Hopefully we'll hear back from them next week. The trial coordinator thought it would be this week, but so far, nothing yet.

In the meantime, today is Good Friday. Camden was home from school today, but Nicholas' daycare was still open. So while Nicholas was at care, Camden and I caught a mother-son movie. We haven't had a mom-son date in a while. He's currently into Power Rangers, so of course, we saw Power Rangers. Someone should have warned me that they don't even morph into their armor and start really being "Power Rangers" until the last 20 minutes of the 2 hour movie! Add to that the 15 minutes of previews before the damn thing started - do you know how hard it is to keep a 4 year old seated for 2.5 hours while we wait for 20 minutes of monster growing, sparks flying, karate-chopping, 4 year old attention-holding action? It's freaking hard! Thank goodness the movie has been out for a while and there were less than 10 people in the theater. I finally moved us down to the entrance row and let him go bananas in the walkway until the movie was enough to capture his attention. Talk about stressful.

Earlier this morning I tested laying on my left side, to see if the pain would return. It surprisingly didn't. It still wasn't normal feeling - but it was painful like yesterday. I could be a fluke, it could be not. Either way, I'm sure I'll be testing it again and again until we get new scans to tell us what the frick is happening inside. Those scans will set the baseline for the trial - what we'll measure success against.

I cannot tell you enough how incredibly hopeful I am for this trial drug to work. I seriously can't. I try not to put all my eggs in this basket - but it's hard not to. Really hard.






Thursday, March 23, 2017

In the weeds

So here we are - 6 weeks from my most recent scans that showed progression and I have yet to start my next treatment. And let me tell you - it's been an intense 6 weeks. (And also - if this post sounds a little off - a little different and not as clear as they usually are - it's because I started writing this 3 weeks ago and I'm just now picking it back up. So bear with me as I try to fuse past and present thoughts. And also forgive me for the length ... it has been 6 weeks after all.)

I have no better words for this situation that is "progression" ... Other than "shitty," I guess I could say it's "so, so, shitty." If you know me in a personal setting - you know I tend to lean toward easy-going behavior ... sure - whatever works. Whatever you want ... whatever makes things easiest for you. I tend to accommodate and I'm quite happy to actually. I don't like imposing my wants/needs/etc... on others. I'll take care of me, as I always do and I'll do it without imposing on others. It's how I am. It's me. I identify with the Pisces persona a lot actually - I'm water - flexible ... flowing ... easy-going.

I'm also quite analytical however, and try to be as objective as possible in as many ways as possible. I try to review every decision for what it is, what are all the options, what are all the possible outcomes, what are all the possible pros and cons, what consequences can we anticipate ... within reason of course. I know I can't account for every possible option, outcome and consequence - but I can certainly anticipate a lot based on my prior experience and the experience of others.

So as you can imagine - in a situation like this - the uncharted waters of progression ... I got fucking stuck (hence the 3 weeks to write one post). There's no flow to go with and there's minimal experience to draw from. I have a list of questions that is 20x the length of the list of answers. My doctors can only tell me what statistics, clinical trial data and practice experience has told them. Anything I want to know specifically like - how do we know it's the cells developing resistance and not the medications just crapping out, as that happens sometimes. How do we know that just switching to a different version of the same Rx wouldn't be effective? Maybe my body isn't responding to the med the same and it's not the cancer cells growing resistant at all. We don't. We don't know any of it. It's seriously trial and error and while I almost always seriously enjoy just giving things a try and seeing how it goes - this is kinda one of those things that doesn't give a lot of room for error.

A lot of trial ... and little room for error. And not to mention - I don't want to be a fucking guinea pig!

So after 5 weeks of research, 4 visits with 3 different oncologists (yes 3), correspondence with 2 clinical trial coordinators, on-going conversations with a cancer support organization called Cancer Commons, and multiple posts and even more responses in 6 different closed metastatic breast cancer Facebook groups, I've sorted through all the paths forward that I know of, and have taken steps down one of the paths. And what were those paths? Well let me share:

From my local oncologist:
Option 1: Taxol (which is IV chemo, once a week for 3 weeks, one week off, repeat)
Option 2: Xeloda (which is pill form chemo, taken 2x daily)
Option 3: Exemestane and Everlimous (a different aromatase inhibitor than what I'm taking now and an mTOR targeted Rx)
Option 4: A clinical trial with Taxol and another drug. I don't remember much about this one because I immediately dismissed it because it had to do with indefinite Taxol.

From my oncologist at MD Anderson:
Option 1: Xeloda (see above)
Option 2: Doxil (which is IV chemo)
Option 3: Exemestane and Everlinous (see above)
Option 4: A clinical trial at MD Anderson that combines Exemestane and Everlimous (which is the standard of care treatment, available to all) and Ribociclib, another CDK4/6 inhibitor, similar to Ibrance (which I was on for 11 cycles/months).

This trial is conducted at MDA and so it would require me to travel to Houston on days 1 and 15 of the first two cycles/months of treatment (so one time every two weeks for 2 months) and then once a month after that. It also would require me to have all my scans there as well. Houston is 3 hours away and we only have one car. Essentially it would require me to rent a car on those days as well as shift the entire burden of the household on Mike for those days - in addition to his work and travel schedule. It would also mean I'd make the majority of the drives myself, because the ask and pull from work would be too burdensome and too frequent for Mike. (We're honestly saving that "need" for when we really, truly need it - which I hope is a very long way away or better yet - NEVER.) So it's not ideal in regard to convenience and it's a trial. So there's no published data on how well these drugs go together. I'd be part of that data. The drugs themselves are an aromatase inhibitor (like the Letrozole I'm on now) - so a hormone inhibitor - as well as an mTor inhibitor, which is a targeted therapy for the mTor pathway of cell division, and then the CDK4/6 inhibitor, another pathway of cell division. The trial is also designed for people who have experienced progression on a prior CDK4/6 therapy (which is Ibrance because it's honestly the only CDK4/6 approved on the market). So - the thought is - this drug combo shuts 3 doors of cell division with the hope that by shutting all 3 at the same time, the cells will go into suicide mode because it can't find another way to divide. That's the theory.

...

None of the above sound incredibly amazing do they? Hormone therapy or chemo. Or a trial using similar hormone drugs to what I was just on but I need to drive 3 hours each way - A LOT of times.

So I kept digging - because - for those of you who know me - when I don't like the options that are presented to me - you know - I find other options. Now whether or not those options are good ones or bad ones - who knows. But what I do know, is there's always more options.

Aside from the amazing support and love and encouragement and soapbox cheerleaders that you get from the members of these private, metastatic Facebook groups, you also get a TON of information. Any side-effect, any medication, any weird rash (sometimes with photos!), any obscure homeopathic remedy - If you have a question about it, and you post that question - you are guaranteed some answers. Some shared experience among thousands of women, each weighing in when they can about what they know. This kind of pool of info also shares the latest articles on newly released drugs or ... you guessed it ... drugs in trials. Remember when you were young, and your parents were always trying to get you to learn from their experience so you didn't repeat their mistake? It's kind of like that. Except - better. I learn from these women how to better navigate my own care because they're all in different places and all are sharing how they got there, what hurdles they had to overcome, good things to know, mistakes to avoid, questions to ask, etc.

So in this crazy excess of information, I happened to catch a post about a clinical trial called NCI MATCH. It's a large scale clinical trial, open to any kind of cancer, focused on treating cancer based on genomic mutations only. They're trying to find out if treating a found mutation with a drug that targets that mutation is better, or not. They now have 24 drug arms open, meaning 24 different kinds of drugs that each targets a single, specific cancer mutation.

In February last year, when all of this got started, my original biopsy was sent off for "sequencing" to FoundationOne. That report told me that I had two mutations that are currently known to be significant based on scientific research, and a handful of ones that are currently of unknown significance. Of the two that are known to be significant, one is actionable. That one mutation is called FGFR2 amplification. In the handful of variants of unknown significance, there's was also FGFR rearrangement. After a few hours of fighting (aka ugly crying on the phone pleading) to a poor customer service person to release the extra data they have about this amplification, they finally sent it to me "for research purposes only" as the gigantic watermark indicated. What it told me was that the amplification was about 5-fold. Why is this important? WELL ... because the NCI MATCH trial has a drug arm for the FGFR1/2/3 mutation. Why did I lay the weight of my life hanging in the balance on a random customer service person? Because in the past gastric cancer trials where this specific drug was used, the data showed that better responses were had by those who had a higher amplification of FGFR2. So ... my amplification of 5 is high? Not exactly. 3 and below probably wouldn't be worth trying, but 5 is like moderate ... maybe worth a shot. But I really wanted to know what the amplification level was because it wasn't included in my original report and I needed to know it in order to make a freaking decision on what to do next! I had told myself that if it was 3 or lower, I'd most likely go the Xeloda route. But if it came back over 3, that I'd go forward with pursuing the MATCH trial. And neither of the IV chemo options appealed to me.

And - in part - a large part actually - I'm glad it did. Pursuing getting into the trial has led me to an oncologist in San Antonio who is hosting the trial at her practice. (Not all trials are available everywhere.) I showed up armed with scans and genomic reports and questions and intentions and an intended way forward. I left with more options on the table and a really strong desire to continue to see her as my primary oncologist. Go figure. What I liked so much about her was that she believed chemo should be reserved as long as possible. She said chemo is good for faster responses, not better responses. She said she likes to pursue the endocrine (hormone) strategy as long as possible and trials when possible before resorting to chemo. This kind of strategic approach resonated very well with me (for obvious reasons). Aside from her thinking, her bedside manner was amazing, she looked at my images, she was prepared to talk with me, and her knowledge of clinical trials was robust.

I left with the direction to think over everything we discussed. I called a couple days later to get started with the MATCH trial as well as another trial called SOLAR-1. SOLAR-1 is dependent on me having a PIK3CA mutation - which last year was not present, but can develop over time, so she wanted me to be tested for it now, just in case, because she's confident the drug is going to get approved, it's showing great results, but by the time it gets approved I may not be eligible to receive it (aka insurance won't pay for it), since new drugs are approved for specific lines of treatment (as your first treatment ever or second-line treatment, etc.) and in a few years, who knows what line I may be on.

But there are conditions to participation in these trials. You have to pay to play essentially. Since they're research trials, you have to do things their way. The MATCH trial wants a fresh biopsy, no more than 6 months old. They want to sequence the cells in their lab. They want to keep the data, the left over tissue, etc. After they identify the mutations, they get to assign you to a drug arm they want you to be in. So my whole intention of dictating which drug arm I'd be willing to go into ... is moot. They pick. Not me. Thankfully, from what we know right now, I only have one actionable mutation - so the odds that I get assigned to the FGFR2 arm are high. If the test comes back with different or more mutations, who knows. And ... since I consented to the SOLAR trial as well, and since I need to get a biopsy for MATCH, I'm also getting a biopsy for SOLAR at the same time. The SOLAR trial is currently only accepting people who are positive for the PIK3CA mutation. Why can't they just use the biopsy results from the MATCH biopsy? Because researchers don't share - at least - not in this case.

So what does all of this crazy long post mean? It means I go in for a biopsy this Wednesday 3/29 at 10 am in San Antonio. The MATCH trial is going to make 4 passes through one of the tumors to get 4 core needle samples. The SOLAR trial will be 1-2 passes in the same, or different, tumor. It means it's all going to be swiss cheese in the tumors after they're done. Part of me is kinda happy that in the biopsy process they're removing some of the tumor cells. The other part of me is scared that they're literally poking the bear and going to piss things off. A couple weeks after each respective trial gets their biopsy, I should know what the results are, and from there I'll know what treatment drug I'll be on. Then shortly after that, we'll know how my body is tolerating it in regard to side effects, and then I'm sure 6 weeks after I start the medication, I'll go in for scans. There's a whole lotta hypothetical right now but one thing is semi-certain ... I have to have a biopsy.

In the interim - I'm still taking letrozole, but who knows if it's doing anything - I can only hope it's still a little bit effective. If not, I'm just hanging out and who knows what's going on inside. I'm hopeful it's nothing like what my mind is imagining, that's for sure. Aside from all this, I still feel very normal, better even, now that I've stopped Ibrance. So we continue to move forward, one day at a time, doing what we do - raising the boys, embracing our first, beautiful spring in Texas, playing in the pool a little bit at a time as it slowly creeps over the mid-70s water temp on an 80 degree day ... and trying not to let so much time pass before I post again because when I do ... it obviously turns into a novella! The end. For now.




Wednesday, February 22, 2017

From the husband's perspective by Mike Bingham

I’ve been pretty quiet on the blog lately, mostly because I wasn’t sure how to sort out my thoughts, feelings and emotions. It has been unbelievably crazy in our lives during the last 12 months that most days I am convinced that none of this is real –or at least I hope that it is not. Its changed my perspective on pretty much everything. How I see my kids, my job/career, my friends, my time and my relationship with Melissa. Everything is different. Many things have actually changed for the better. It provides perspective, and allows you to focus on what you truly care about each day without regret.

Sitting in the doctor’s office after her latest scan, I think we both knew something not so pleasant was coming. Progression. Melissa’s title for the last post is aptly named. It is an unsettling, anxiety provoking word that instantly increased the urgency of our meetings with her doctor this past couple of weeks. You can feel the swirl of uncertainty and concern in those meetings has increased since we received the results.  Her doctor used the phrase “critical real estate” to describe the liver, and rightfully so. She needs her liver healthy to process the drugs she takes to protect the rest of her body. If the liver does not function, the options become limited and her disease becomes much more dangerous.  

The stress of everything that has taken place over the last year has taken a toll of me physically. I have anxiety and waves of panic. I don’t sleep particularly well most nights, and the tension in my head neck and back feels almost unbearable at times. Most days you pray for the world to pause long enough to get some air, as normal responsibility is always there waiting for us after we deal with our “other life.” Melissa and I have talked about how it feels like we are balancing two universes, trying to keep the kid’s lives as normal as possible. We try to have normal days and to appreciate the small things that we may have taken for granted prior. But this is difficult. Every morning I wake up and start my day with the sinking feeling that my wife’s life is threatened and that death may truly do us part way before I ever thought possible. I have nightmares about speaking at Melissa’s funeral, with her family in tears and my young kids staring at me looking for answers. I have anxiety about trying to raise two kids on my own, knowing that I am completely inadequate compared to their mom, and that their life will never be the same. None of it makes sense, but unfortunately, so many people are faced with this challenge. So many families are impacted by this disease, too many fathers, mothers, sons and daughters are lost to this illness every day. I try to appreciate what I have right now, today, in the moment, and not spend all of my time thinking about the worst case scenario. I know that I will regret wasting away this time agonizing over something I cannot control.

A few weeks ago Melissa and I were able to go to the Super Bowl. I am a life-long Patriots fan (you hate them too? Sucks to be you) and with the game being two hours away in Houston, we couldn’t resist. Our mentality and approach to life has been influenced by this overwhelming uncertainty. We want to live for the moment, because we don’t know how many we will get together. The game was of course amazing, with a 25 point second half comeback and an atmosphere that was surreal. It was an unforgettable night, but the best part, was that for a few minutes we were completely distracted by something that wasn’t cancer. We got to jump up and down and scream and yell for the right reasons. We got to have fun without the feeling of associated sadness that has accompanied many our special moments because of the unspeakable implications. It made me appreciate how supportive she has been of me, taking on my rooting interest in sports because she cares about me, and she cares about what I care about so much that I am not sure who was more excited when they won the game in overtime. Her expression of equal parts disbelief and joy is something I will never forget, and I will be forever grateful that I got to share that moment with her. For all of the heart-wrenching moments in the past year, this was one of my most cherished.

Allow me to get on my soap box for a moment. I want everyone who cares about her to approach this that same way. She has always been someone who shows up for her friends and family. When people need her, she is always there, usually at the expense of her own personal benefit. Because of everything that has happened, I want people to do the same for her, even if she would never expect that of you on her own. I want people to make the effort that she deserves and show her how much you care about her and that you are pulling for her to make it through. She will never ask, but she shouldn’t have to. Treat her like she has always treated you, I promise, you will never regret this decision. So many of you have done this, many of you so unexpectedly. People you would never expect show such incredible support that it is truly humbling.

Thank you to her cousin’s DJ and Tracy for coming to LA to meet us and take her to Universal Studios. Thank you to her cousin Alex for flying down from New York and spending time with her during Thanksgiving. Thank you to the Jurgens clan for flying out during Christmas and allowing her to see everyone and create memories in home she has created for our family. Thank you to her mom for dropping her life to come help us during scan week, Cam’s birthday and to attend the Super Bowl. Thank you to Mike and Melissa Santarcangelo for picking the boys up from school while we are in Houston visiting MDA to get second opinions on her treatment.


Thank you to everyone who has taken a moment in the last year to put her first. I know how much she loves you and appreciates you for this.