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February
9
2021

A Reschedule & an All Is Well

Hi 😊 

Just a quick update for those of you who read our last post.

Callaway's surgery has been postponed until the 24th. Her surgeon had something else come up and needed to reschedule, and this was the next best date. We were definitely disappointed as we are more than ready to get this tube and tape off of her face. However, all else is smooth sailing right now. Baby girl continues to put on weight, make developmental gains, and impress her genetics team. 

She loves to bounce in her Jolly Jumper, babble really loudly and really all-the-time, take naps in her grandmas' arms, and wake up in her crib when she can sense her mom and dad are having a nice evening in front of the fireplace without her. 😉 

Her team keeps emphasizing their surprise that she hasn't had to be hospitalized this winter, and chalks it up to a whole bunch of isolation with a side of Calla resilience. Or maybe the other way around? We are so grateful Luke can work from home -- both for the extra time he gets to spend with our girl, and for the added benefit of reducing risk. In addition to that, our parents' occupations allow for a lot of flexibility/work-from-home, so Calla gets to play with all of her grandparents as well. 

We'll write again post-surgery, but we expect it to go great and be back home in no time. 

Love,

Carina & Luke & Calla True 

P.S. See attached photo for Calla having a chat with her Neema while food goes into her belly via tube! Yay for multitasking! 

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January
23
2021

On Bowing

Hello, Everyone!

Callaway has gained almost two pounds in three weeks! She’s back to her fully energetic self, has FOUR teeth now, can sit up independently, and just last night babbled “mamamamamama” for ten minutes straight (I’m choosing to believe she's consciously referring to me 😉). I am so grateful for NG tubes!! What a simple but amazing invention. It is such a relief to push whatever Calla doesn't finish in a feed through her tube. Knowing she's getting the nutrients she needs to grow and thrive far outweighs the hassle and the grief. 

I don't think I would have said that quite as emphatically two months ago. It's hard to accept a chronic condition. We're seven months in and maybe to some it seems like we just naturally fit into the title of "special needs family" now, but I still wake up in shock some days. Some days I don't, but some days I do. The grief comes and goes, and there have been many days that I've railed against this disease. And, more specific to right now, against needing anything at all to help my daughter eat. I'm so grateful the technologies exist, but having to use them is humbling. I'm having to let go of my desire for control and learn how to use implements to fill my daughter's belly. Like I said, very humbling. 

And speaking of humility, I'm doing a lot of mental bowing these days. In a recent podcast episode, Rob and Kristen Bell describe Soto Zen monk Suzuki's practice of bowing. You bow to something difficult that you don't understand a person, a situationand you acknowledge that that thing is your teacher. Kristen says that bowing does two main things: First, it helps us accept the way things are, rather than fighting against them. It’s a way of saying “I don’t know what’s best, and I trust that this is part of the process.” And second, like I referenced above, it teaches humility. It “takes you out of the driver’s seat, which is an exhausting place to be... and helps us have grace for ourselves. We have such high expectations for ourselves, and bowing releases us from those standards.” 

G-tube surgery is scheduled for February 10th at 9 am. It’s a routine procedure, but I’m still scared. It’s required to keep my daughter growing, but I’m still sad. 

So I’ve been doing a lot of bowing to this surgery lately. Trusting I don’t have the full picture. Gratefully and gradually releasing control, as it’s the only choice to make in this moment. I bow, and my chest loosens for a moment. I bow, and a joy in my (our) present suffering shows up. I bow and remember that this is Callaway’s story, Callaway’s life, not mine, and it’s my job to keep making the best decisions that exist for her until she gets to pick up her suffering and decide what she will do with it. I bow, and I get to keep living my own life with my hands as wide open as possible. 

I’m not saying there’s anything okay with sick babies and children, or that I understand why people have to go through so much pain in their lives. I don’t think Callaway should have to go through an ounce of suffering in her life, and I’m often angry at the setup of this world. But it’s the only reality I have. So I bow. 

 

A few surgery details: 

We will be inpatient for a few days post-surgery. This will be very trying for us as we have a lot of pain wrapped up in our first hospital stay. Trusting this one will be different (non-emergent, short term, a specific purpose) and also knowing it could be hard. I’m so grateful her genetics team will be with us during this process, making sure her special food considerations are handled appropriately as she fasts beforehand and recovers afterwards.

Because it’s a relatively simple and quick procedure and somehow it’s STILL COVID AGH, Vanderbilt is not currently allowing exceptions for both parents to be present, even in the holding room during the surgery itself. I will be doing lots of mental bowing as I fight against the fear of not having Luke by my side during the surgery and the subsequent day and night that will follow. We’ll rotate nights at the hospital after that. 

The recovery period post-hospital stay will include careful caring for and monitoring of the area around the g-tube, less tummy time while it heals, and cutting holes in all our favorite footie pajamas so we can feed Calla without having to fully undress her every time. 

 

Thank you, as always, for your care for our little family. Everyone has their story, their own struggles, and we so appreciate you stepping into ours. 

 
With love,
 
Carina & Luke & Callaway True

 

December
30
2020

December 30, 2020 - Weight Check!

Thank you all for your kind comments and prayers after Luke's post yesterday!! We are so buoyed by your love every single time. Wanted to just give a happy little update: We just got back from a weight check at Vanderbilt anddddd.... Calla gained 11 ounces in two days!! Her docs were very happy with this and sent us back home right away. Shortest appointment ever. She has tolerated her tube feeds well so far and we are already seeing her cheeks start to chunk up again (chunky for her at least ;) 

Onward! 

Carina & Luke & Calla 

December
29
2020

December 29, 2020

Friends, family, friends and family of our friends and family, 

Last we updated you was November 25th, and Callaway was showing us how excited she was to be alive. She was growing, smiling, and progressing in her milestones in a way that amazed us. 

It's been a little over a month since then, and the rollercoaster we've read about from so many other parents of children with MMA continues. Callaway is still smiling, moving, and laughing, but she's not growing. 

About 2 weeks ago, Callaway started a downward slide in the desire to drink her formula, which culminated in an all-day outpatient hospital visit yesterday. We'd had her regular genetics appointment scheduled for the Monday after Christmas, and had been communicating with her team as her appetite declined recently. We knew this appointment could be different from the ones in the past. 

What we didn't know was that Callaway's weight would have dropped over half-a-pound in the three weeks since her last weigh-in. This news, mixed with Calla's declining appetite changed the trajectory of the day. 

Children with MMA walk a tightrope — between the ever-present risk of taking in more of the four "problem" essential amino acids than they can tolerate and the dreaded possibility that they'll refuse enough food that they don't get enough of those essential amino acids to thrive. Either extreme could send Callaway to the hospital in another metabolic crisis reminiscent of her first month-long inpatient stay. Of course, we'd catch it earlier this time, and the medical team can act faster since we know her condition, but it's nevertheless terrifying to both of us, as her parents. 

Yesterday, we found out Callaway was edging toward the not-enough amino acid side of the MMA tightrope. And that was discouraging because we've both dedicated a good chunk of our time, effort, and heart in recent months to helping Callaway take in as much formula as possible. It had been a daily struggle. Every day, the questions, "How many millimeters did she take this feed?" and "How much of her daily recipe did she leave today?" rang through our home. As much as we tried to think clearly about it, and not let the "end of day leftover" amount determine our moods, it totally did. For two weeks, our moods were downtrodden, because our baby girl didn't want to eat enough to help her body keep up with her ever-sunny predisposition. 

So we showed up yesterday to her genetics appointment full of mostly-negative emotions: frustration about Callaway's limited calorie intake, sadness about having been worried for most of this Christmas season, and dreading of what the scale might say when we lay our sweet little naked Calla on the crinkly paper-covered baby scale. It read, "5.5kg." The nurse said, "why don't we just place her more in the center here jusssssttttt to make sure." 

Again, 5.5kg. That's 0.3kg or 0.6lbs less than her last weigh-in.

That number set the tone for the rest of the day. Our genetics team finally had the talk with us — it's time to move toward getting a G-tube. We knew this was possible, and we'd been fending it off since we first heard about it. Callaway had been an exception to the rule for a long time... Most kids with her specific version of MMA have a G-tube for at least a portion of their lives, because the disorder is known to reduce appetite, yet patients need to manage their diet so precisely that there's no room to skip a feed because they don't want to eat it. Those nutrients must go in. 

Anyway, the genetics team pulled some strings and we got immediate appointments with a GI surgeon who would perform the G-tube surgery, and an attending physician in GI, who would help us determine the next steps to ensure Callaway's reflux, which had gotten worse in recent weeks, was under control. 

The plan forward is tricky and complicated... Callaway's reflux has been especially bad in past weeks, causing her to show a lot of discomfort during and after eating, and that may be contributing to her lack of desire to eat. That problem, if it persists, won't get better with a feeding tube — in fact, it could get worse, since more food will be in her stomach. 

So we have to act fast to get her enough food while also figuring out how to effectively manage her reflux. If the multiple available types of reflux medications don't work and Callaway continues to vomit or gag excessively, we'll consider a surgical solution called a Nissen, which is typically a last-resort for reflux treatment. The catch is, if we're going to do a Nissen, it makes way more sense to do it at the same time that we do a G-tube. One hospital stay. One anesthesia trip. One recovery period. 

So, we're going to get a G-tube, that much is decided. We just have to buy some time to try every reflux option before scheduling a G-tube surgery, so we can know whether we also need to do the Nissen along with the G-tube. 

The temporary fix? Callaway has an NG-tube again, which will look familiar to those of you who have followed her story since the beginning. It's just a feeding tube that feeds through her nostril, down her esophagus, and ends just at the start of her stomach. It's uncomfortable for her, and a poor long-term solution, but it's going to help us keep her growing while we try to figure out her reflux. 

Since starting to feed Calla through her tube, her energy is up, and it's a bittersweet relief to feed her in a way that ensures all those good nutrients are going into her body. 

Right now, the day after our grand outpatient tour of Vanderbilt Children's hospital, we're tired. We spent the appointment fending off the triggering images, sounds, and smells that remind us of Callaway's ICU stay. The screaming child in the next room; the random, unexplained beeps coming from who-knows-where; the ever-present reminder that although these doctors are here to help, we're the ones in the driver's seat.

We kept returning to the truth that we're not back in the ICU. We're on offense this time, not defense. Yet, we need to show up with vigilance every moment, because our Callaway needs to keep growing. In many ways, we feel like Callaway challenges us. She's doing her job with incredible grace. She seems uninterested in dwelling on the hard parts of her life, and tirelessly curious about what good things she can rest her eyes on. That brightness — that dogged determination to keep thriving — that's a hell of an example she sets, and it sets a high bar for us. 

We enter the next few weeks tired, determined, scared, and supported. It's a mixed bag, for sure, but forward is the only way. 

As always, thank you for your care and love. 

Luke & Carina & Callaway 

November
26
2020

Playing The Long Game

Hello, Callaway's cheerleaders and champions! 

Carina here!

Our little girl is just over five months old now and her excitement at being alive on this planet is truly breathtaking. She starts each day beaming & chattering & squealing, and not much seems to get her down. She is rolling over on her own, loving tummy time, can't get enough of daily walks around the neighborhood, and smiles at all of the healthcare professionals she visits each month (...except maybe the phlebotomists who draw her blood). She is entranced by her own hands, wants so badly to start crawling, and is practicing sitting up on her own. Her eyes are still a deep blue and they take in her world with fervor and excitement. In short, she's thriving.

Our every-three-weeks genetics appointments continue to be crucial to Callaway's success. Each visit brings with it lab work that helps her team adjust the total protein in her formula concoction. If her amino acids are too high (which means they could convert to methylmalonic acid) we reduce the "normal baby" formula and increase the powders that don't contain those amino acids. If they're too low, we add in more "normal baby" formula or selectively put in the amino acid that's too low. Did you know that the amino acid methionine is a crystal-like powder that smells like fish food? Now you do! Calla's bottles perpetually smell like fish food when we're adding in methionine, but thankfully she doesn't seem to care. 

She's eating very well right now. In October she started eating very poorly again and we began discussing the need for a g-tube, which would let us feed her directly into her stomach. We visited a feeding specialist, adjusted her formula, tried a homeopathic medicine to help with reflux, and attempted to reverse any feeding aversions we had created by forcing her to eat more than she wanted (out of our own frustration and fear). I will say that feeding Calla often makes up 90% of the hardship that comes with this disease. I am still grieving not being able to breastfeed her, and not getting to have feeding (which occurs so often) be a bonding time for us. Thankfully, the homeopathic med has seemed to help her reflux and Calla has started eating better again in the past two weeks. She finished her 24-hour mixture of formula twice in a row this week, and today she took over five ounces in one sitting. That's not very much for a baby her age, but it's enough to keep her growing and we've been told she'll just be a petite and slender child. Up next — starting solids with little to no protein! 

Callaway's MMA level continues to fluctuate, but we have not gotten back down to the 100 range that her doctors were so comfortable with in the beginning. We have not witnessed any delays yet and have accepted that she may just live around the 180-250 range now, and it could negatively affect her development, it could not. This is not ideal but there is not currently any other option to help bring it down. The clinical trial we're hoping she'll qualify for next June is still on hold due to COVID, but that has allowed the scientists to change the drug in a way that the lab rats are responding to even better! Our clinical trials doc, Dr. Morgan, remains very hopeful for this treatment and keeps reminding us that we've got to get our sweet girl through this winter so she can be eligible next spring/summer. He has prepared us that she may get sick this winter despite our best efforts, and that if she does, we are to act fast and get her to the hospital so we can prevent as much damage as possible.

Like all of us desperate to see the ones we love and terrified of getting sick, we walk the tightrope of needed connection and necessary isolation. My dad's favorite phrase for this season is "we're playing the long game." I remind myself of that when my amazing 1.5-year-old nephew looks at me unfamiliarly, when I haven't seen my lovely sister in months because her job requires a level of exposure we're not comfortable with, when I can't hug a dear friend who is having a hard day. When the walls close in I take a walk, text my people, meditate or drink a Coors seltzer or two (no I'm not kidding and yes they're delicious). When COVID abates, I don't know how much we can let our guard down. Will our lives perpetually feel like a global pandemic is raging outside our door? We'll only really know when Calla gets sick for the first time and we see how her body fares. I'm sorry we're all having to deal with this virus right now and I'm so sorry for those of you who have lost loved ones. I'm sorry to those of you who are lonely, who are anxious, who are trying to find positive ways to cope when all you want to do is sleep or drink or eat or do anything else in excess. I feel you and I'm trying to have lots of grace for myself this year in all the ways I'm attempting to survive and even thrive. I hope you're extending grace to yourselves too. 

Calla is the light of my life and I truly feel so honored to be her mom. And I'm pretty sure Luke would say the same, but I'm not going to ask him right now because he's fast asleep on the couch. He works so hard for our little family each day and then emerges from his home office each evening, ready to make her food, make her giggle, make sure I'm still breathing. He's the best teammate I could ever ask for, and I hope and wait for the day his load is a little less heavy and contains a bit more time for the things that make him come alive. Please keep cheering him on  just because he carries it well doesn't mean it's not heavy (unknown author). 

Will my updates ever be short? Who knows. Thanks for reading, for caring, for loving us. 

Until next time!

Carina & Luke & Calla True

October
5
2020

A Calla True Update

Friends and Family,

Carina here. Happy October! Just wanted to share a little update as time continues to pass (thank God for the passage of time and also hello please slow down). 

Callaway is now 3.5 months old and doing wonderfully. She is truly a delightful little baby and we still can't really believe she's doing so well. Some highlights (and maybe a tiny lowlight or two):

  • She got her feeding tube out on September 9th! We had been trialing giving Carbaglu by mouth, in the hopes of getting to remove the tube in late August, but had a major setback when her reflux got worse and caused her to gag and vomit it back up too often for anyone's comfort. In fact, she was decreasing in the amount of food she was eating and vomiting often enough that we were starting to get really nervous about her ability to keep eating solely by mouth. So that just really made removing the tube out of the question. AND THEN: On September 9th our wonderful genetic nutritionist, Rita, suggested a new formula we could try that contains rice starch. This weighs down the food and helps keep it down even when it tries to come back up. So the morning of the 9th, I go to give Calla her Carbaglu via tube and CLOG the tube for the first time ever. I MEAN, we had been bragging for months about how we had yet to clog the tube, whereas several nurses had clogged it during our hospital stay. We were so determined not to clog it because of how horrible it is to put it back in, and that terror had helped us come up with some pretty good techniques to make sure the medicine was good and crushed before administering. Long story short: I descended from my cocky pedestal and clogged it somehow and it was clear that we were going to have to take it out. We called Rita who said "looks like we're trialing no tube today!" We pulled that thing out so fast. What a beautiful left cheek to behold! Then, that night we began making her formula with the new anti-vomit stuff... and she promptly stopped vomiting after feeds COMPLETELY. Which means she also kept Carbaglu down EVERY TIME. What I'm trying to get at here is that those two things occurring on the same day was positively serendipitous. Had she kept vomiting, we'd have had to insert a new tube. And here's the best part: we had been suspicious that the tube was contributing to congestion, gagging, and overall discomfort... we wanted that thing out so badly. And within 12 hours of removal Callaway was absolutely a happier kiddo. She started opening her mouth wider, cooing and yelling and chirping more loudly and more often, having clearer nasal passageways, and taking more food. The combination of the new formula and the no tube was a huge turning point for all three of us. Stress around feeding and giving Carbaglu went down immensely. (Wow sorry that was so long thank you for reading the minutia; writing this all down is causing me to feel such gratitude for that day all over again.)
  • Speaking of gratitude: tonight I saw two tiny socks in the washing machine and was overcome with gladness that those two tiny socks were in my washing machine because they had been worn earlier today by my alive and well baby girl. You really don't have to look far for things to be grateful for, even in all the mess and horror that life can be. But it's still a hard practice at times. Joy is around most corners but so is grief and I'm still frustrated at how often those two go hand-in-hand. 
  • Callaway's methylmalonic acid number is too high right now. It was hanging out around 99 (which is terribly high but normal for a kiddo with MMA-) and then shot to 229. This meant she was getting too much of the protein that contains those 4 essential but deadly amino acids, and we quickly had to change her formula make-up (Rita and Dr. Phillips did all the math and told us what to do differently). It went down to 183 within a few days... but we need it to be closer to 100 to not worry about long term cognitive impairments. Apparently the "alert" number is 167... which means that over time, if a child's average MMA number is 167 or above, they are significantly more likely to have cognitive impairments. It's also very bad for her liver. This has caused quite a bit of worry but Callaway is still acting like her adorable, alert, bubbly self, and we'll get another lab draw tomorrow morning to see where the number is now. Hoping it has continued to drop. This'll be an issue every time she has a growth spurt (which means she can handle more of those amino acids) and then starts to slow down in growth again (which then means it's time to cut back again). It'll be hard to know exactly when this happens, so we'll have to follow her growth charts really closely. Trial and error, but with potentially life-altering consequences. Sigh.
  • The days continue to be filled with lots of normalcy with a side of anxiety tacked on... this often gets the best of me and I have to be pulled back to earth and the present moment by Luke or my mom or my mother-in-law or a friend who answers my frantic phone call. I'd like to be more independent and self-sufficient but I'm just not there yet. So instead I keep trying to open up my hands to accept all the love and unconditional support coming my way.
  • Callaway is gaining weight well, meeting her developmental milestones (she's laughing as of Tuesday with that deep voice of hers and I've never heard a sweeter sound), sleeping well, and actually seems to be enjoying her life for the most part. This evening the three of us went on a walk and I said to Luke, "I think she likes her life for the most part!" While it's not her job to ease my worries and existential guilt, boy does it help when she flashes that grin at me after a long day, assuring me that she's just living in the present moment and feeling really good to be here in this house -- in this world -- with us. 


The last thing I'll say is this: We reached our GoFundMe goal (shoutout to our friend Mariko for setting this up for us so early on!!) a few weeks ago, and are just blown away by the financial support you all have shown us (through GoFundMe, Venmo, etc). The fact that we don't have to worry about Calla's medical bills for quite a while is so absolutely incredible and hard to even fathom right now. Thank you for caring for us in such a tangible way. 

Until next time,

Carina & Luke & Calla True

August
24
2020

A Long Overdue Update!

To our amazing friends and family,


It has been a while since we last updated you. To be honest, we got used to a certain number of “new developments” while we were in the hospital that our threshold for what constitutes an update is pretty high. But as time has gone by and we continue to be stunned by the amount of thoughtfulness, support, and love our communities are showing us, we wanted to share a post that highlights a few noteworthy clinical happenings and how we're coping in this post-hospital season. I (Luke) am writing the clinical piece and then Carina takes over for the feelings update. 


Quick, Fun Update:


Before we get into some of the more complicated stuff, here’s a super simple, fun update from Friday morning. The blood clot that Callaway developed in her right leg during her ICU stay has cleared up. This is awesome on two fronts!


  • No more heightened risk of additional blood clots or internal bleeding (extra risks we were really tired of worrying about)
  • No more twice-daily blood thinner injections! It’s really not fun to come at your newborn daughter with needles three times per day. We’re excited to start filling up the sharps container at one-third the speed

Treating Callaway’s Specific MMA Mutation:


A while back, we got news that there may be an effective cofactor medication called hydroxocobalamin that could be the “silver bullet” in treating the way Callaway’s system mishandles specific essential amino acids to translate them into protein. We were waiting on genetic sequencing results to come back to confirm whether the once-daily intermuscular hydroxocobalamin shot was actually addressing her specific mutation, or if she had one of the slightly more rare MMA mutations that aren’t responsive to the cofactor.


Well, we got the results of Calla’s DNA sequencing, and she has the MUT- mutation, which means she’s very unlikely to be responsive to hydroxocobalamin. This stings. We’re still waiting on a few more tests and some trial-and-error to confirm that she’s not a rare MUT- exception that is responsive to hydroxocobalamin, but that is very unlikely. If we confirm she’s not responsive, this means that there are not currently any proven, effective treatments for Callaway’s disease.


For now, the only way we can keep Callaway from another metabolic crisis is by precisely managing her diet, keeping her from getting sick with the flu, RSV, or any other viral infection, and monitoring closely for symptoms. If science stood still, this would be the prognosis for her entire future, unless we opted for a liver or liver/kidney transplant, which is a risky procedure that has mixed results among MMA patients, especially among those with the MUT mutation. But luckily, science doesn’t often stand still.


Promising Clinical Trials


There are two clinical trials that are on our radar right now that Callaway may qualify for. The first is a transfusion-based messenger RNA treatment from a pharma company called Moderna. The second is a gene editing trial from a company called LogicBio. Both these companies are viewing Methylmelonic Acidemia as a good starting point for new therapies that could prove promising for many different metabolic disorders. We’ve pinched ourselves a few times about this — not quite believing that our daughter’s rare genetic condition is the one many leading geneticists have made their life-work at this exact point in time.


Moderna (mRNA-3704)


mRNA-3704 is a treatment that is different from existing ways of treating methylmalonic acidemia because… well… it actually treats it, rather than just manage it. I’ll spare you the scientific jargon, but basically the treatment they’re testing requires regular blood transfusions that include what’s called messenger RNA, which essentially tell the DNA in a patient’s body to fix the broken link it the way it processes the four essential amino acids that cause problems for people with MMA. It’s not a one-time fix, and does require ongoing transfusions to continue sending the message to DNA, but if it works the way they think it will, it would be curative, since it addresses the underlying problem at a RNA/DNA level. If you want to learn more about mRNA-3704, this video does a great job of outlining it.  


What makes this awesome:


  • It’s a potentially curative treatment for MMA that requires minimal management or quality of life sacrifices.
  • It has already received a relatively unprecedented designation from the FDA that allows them to run both phase 1 and phase 2 of the trial at the same time, testing for safety and effectiveness simultaneously. This bodes well for the speed with which we could see this treatment become the new standard of care.

The drawbacks:


  • The trial is currently on hold amid COVID-19, and is unlikely to start back up until Spring of 2021, at best.
  • The age requirement to qualify for the study is 1 year old and above. This means Callaway could not qualify to participate until mid-June, 2021.
  • There are some biomarker requirements to qualify for the study that Callaway is currently not meeting. Ironically, that’s because her Vanderbilt team is managing her disease so well that some of her metrics, like methylmalonic acid level, are low enough that she’s considered to be in a less urgent/dire position than some other patients. This is especially strange since she has a very severe form of MMA. 

Bottom line: We’re cautiously optimistic about the mRNA-3704 trial since it seems like the curative treatment that has the best chance of a fast FDA approval to become the standard of care once the clinical trial has finished. It’s also the trial Callaway has the best chance of qualifying for.


LogicBio (LB-001)


Where the Moderna study uses messenger RNA to help the DNA know how to manage amino acids, the LogicBio study uses a treatment that actually edits the DNA to permanently fix the way it processes the amino acids without the need to keep reinforcing the new messages with mRNA transfusions.


What makes it awesome:


  • If it works, it’s a one-time treatment that solves the underlying genetic problem happening in Callaway’s genes. It doesn’t get better than that. It’s the holy grail of genetic disorder.

The drawbacks:


  • Only eight patients will be included in the clinical trial, which is very, very small. And of those eight participants, only four can be under three years old. It’s a long-shot that Callaway would be one of the few.
  • Gene editing therapy takes a long time to get FDA clearance — for good reason. While it’s not an inherently risky type of treatment in this era, the stakes are very If something goes wrong, it goes very wrong.

Bottom line:


  • It’s unlikely that the clinical trial will move quickly, and even more unlikely that it will become the new standard of care for MMA patients in short order. Even still, we’re hopeful that some time in Callaway’s lifetime, there might be a full one-time treatment that is curative.

And Now For Some Feelings


We spent a week at my (Carina) parents' house after leaving the hospital, and then three at Luke's parents'. While we were excited to be out of Vandy, we weren't quite ready to go back to our house. I think part of it was due to the traumatizing way in which we left our home. When I would return briefly to grab a few things or water our plants, it just felt dark and foreign. I didn't want to be there and knew it would take a concerted effort to reintegrate. I just finished Lisa Gungor's book The Most Beautiful Thing I've Seen, and she describes what it was like coming home from the hospital after a lengthy stay with their newborn daughter, Lucie: "We came home as different people. It was like I was in the home of a family we used to be, an idea we used to have. Everything looked familiar, but it all belonged to other people, different parents than the ones sitting here on the sofa."  Spot on, Lisa. We were so grateful for the option to stay with our parents, both for the extra support and so they could finally spend time with their granddaughter. 


The month with family was very hard and very lovely. Luke and I fretted at every possible symptom, didn't get much sleep, and struggled to accept Callaway's condition. We called on-call genetics late at night, cried at the dinner table (me), and cried alongside Callaway when giving her her shots (me again). We also spent time by the pool, enjoyed delicious meals we didn't make, played a lot of Bananagrams, and watched Hamilton for the first time.  We took Callaway on her first stroller rides, discovered she's obsessed with ceiling fans, and cheered her every burp and normal looking poop. We started and stopped taking her temperature every time she seemed a little sleepier than normal. We made it through several genetics appointments that brought good and bad news. We watched her smile for the first time. We held her in our arms for almost every nap, as it ensured the most deep and peaceful sleeps for her. We talked about our experience in the hospital over and over again and felt the high levels of stress begin to leave our bodies. We caught up with friends via phone and social-distanced porch hangs. We started to think about going home. 


And then, we finally packed up all of our stuff last Saturday and made the 45 minute trek back to Nashville. We've spent the past week making this place feel like home again, and I'm so grateful to report that we really are getting there. We're finally getting to utilize Callaway's rocking chair and changing table, her 0-3 month footie pajamas and toys. We're making our own coffee and opening our own curtains. We've got Parks & Rec on in the background for half of the day, and we're watching Callaway settle in to this environment. Her home. 


We're doing a lot of attempting to live in the present moment. Callaway is stable and developing like a "typical" baby. She weighs 9.5 lbs now and we can't stop squeezing her chunky cheeks and thighs. She can hold her head up high, loves to smile, tracks us with her eyes, and is starting to "talk" at us. The days are filled with lots of normalcy mixed in with a few extra MMA-related things. We are learning how to be new parents. And we are also living with the knowledge that this disorder does not go away, holds our daughter's future in its hands, and demands our utmost vigilance — and that of her medical team. Our genetics doctor handed us a scary article a few weeks ago titled "Long-term neurological outcome of a cohort of 80 patients with classical organic acidurias." I read it with a blue Sharpie pen in hand, underlying phrases like "degeneration of the basal ganglia, progressive renal failure... and acute pancreatitis," and shuddering at sentences such as "two patients with MMA died following an acute metabolic episode at 11 and 7 years old respectively." 


We don't know Callaway's future. We've had the illusion of control stripped away pretty quickly. When I was pregnant with Callaway I knew anything could happen, but MMA has really really highlighted that. 


And so, for however long we have with our sweet daughter — months or years or the entirety of our own lives -- we'll attempt to live in the present with her. One of our friends called her our "present guru" and I really like that. She reminds us already to soak it all in. This doesn't mean we can't sit in denial at times — in fact, I think that's healthy and necessary — it just means we get to be a bit extra grateful for all the little things. Because it turns out that all the little things are the best things anyway. 


Thank you all for reading this. For continuing to check in and help with food and feelings and love us well. We know there is so much going on in everyone’s lives right now. We know expending mental and emotional energy is difficult as they are finite resources. We know your own pain and suffering are present in this violent paradise (thanks again Lisa Gungor for that extremely accurate description of life). Thank you for continuing to be present with us in ours. 


Until next time,


Luke & Carina & Calla

July
24
2020

What Callaway and You Have Been Teaching Me

Hey all, I (Luke) promised I'd share a little bit about what I have learned through this experience.

I find that you really only have two options in crisis: to open up or to close off. Every urge is to close off — like a boxer dipping their head behind their gloves. Closing off is safe. It's why we blink when startled. We protect what's vulnerable instinctually. Keep out the threat.

Though I have felt the enticing and instinctual urge to cover up, I've been trying to approach this season with a wide-open heart, seeing everyone as my teacher, and trusting that this blow... no matter how devastating... will not be the end of me.

You see, unlike a boxer avoiding a hit to the face, I felt like this experience must have a gift for me amidst the pain. Closing off felt cowardly, or at best, selfish. 

I've tried to wake up in the morning and re-pry my heart open... envisioning the tender, vulnerable, wounded part of me exposed because it's the only way to take in the gift of this experience. It's the only way to soak up everything that Callaway, Carina, and you all are teaching me. Because everyone can teach me something, and I'm beginning to see that the pride that comes with being "right" or "safe" (or, God-forbid, both at the same time) is mostly useless. 

I'm so glad I haven't covered up. 

That vulnerable part of me is what's let me really love our daughter, who isn't safe to love. 

It's what's let me be a real partner to Carina in this time. 

It's what's let me be honest with my friends about what's really going on. 

And it's what has made your heartfelt words and dogged determination to support us so awe-inspiring. 

It's because of that awe — the shock of realizing that Callaway has so many people who care so deeply for her — that I've started to process this whole experience as a gift. A painful gift, no doubt... but a gift. 

In short, the gift is a newfound understanding that the whole reason we’re here is to be good to each other. That’s it. 

We thought we were going to lose our daughter. We prepared. We made the calls. Our poor families and closest friends began the grieving process with us. They wept with us. They cried out with us. 

Then, in a matter of 48 hours, things seemed to turn around. Though I didn't walk in the shoes of someone who had to bury their child, I tasted a tiny bit of it. And that was way too much. 

For a shocking number of our friends and acquaintances, we became a pressing and urgent priority. Everyone wanted to help, and they have — with money, food, prayers, songs, vibes. Everyone has given in the way they mean it. And the variety of ways people have given is inspiring. I've never cared so little about the thin-slicing I used to do between faiths, worldviews, and political opinions. 

The gift of crisis is that none of that matters. And when none of that matters, there's so much room for love to grow, to surprise, and to satisfy. Everyone has been filled with grace for our family during this time, and we've been cared for in such big and small ways — and each piece of help was just the right size.  

On one of my "off days," as Carina and I were swapping out at the hospital, I visited my brother and sister-in-law's home. Without intending to, I fell asleep on their couch. Hours later, I woke up covered with a blanket, the window shades drawn, and the house quiet as they had gone for a walk. So tender. So kind. Exactly the soul-food I needed in that moment.  

The kindness and goodness our community has shown us during this time have allowed us to focus on loving our daughter and each other, best we can. To see financial help flood in and feel the positive words wash over us. To accept the gift of meals brought to us over and over. 

I don’t know how else to describe it: 

This has been a truly traumatizing experience... but this — human kindness — is what it’s all about. 

The tenderness of draping a blanket over your brother. The ferocity of leaping into the arms of your hurting family member. The consistency of showing up every. single. day. with food to show you care. The generosity of $5 and $500 donations for medical costs. The inconvenient sacrifice of mowing someone else’s lawn. The empathy it takes to just sit and be with someone who’s hurting. The bravery of saying, “I just don’t know what I can do to help.” The poise our close friends have shown in letting us come to them. The complete disregard for “awkward” that comes with texting an old acquaintance and saying, “we’re with you in this.” The commitment of prayer, no matter who/what you pray to. The solidarity of posting, “Go Callaway!” over and over. 

This is what it’s all about. 

The greatest tragedy would be to emerge from this great trauma and forget the gift of clarity it gave me. 

There’s no time for pride or correctness or high-minded ideals when heartbreak and tragedy hits. 

Before Callaway’s arrival, I lived under the assumption that the really bad things... the things that break people... would never happen to me. And if they did, they would break me... I would spiral into an abyss of depression that would leave me begging on the street, because I would have decided it wasn't worthwhile to keep trying. 

I don’t mean to be dramatic, but it’s true. I always thought I was two really bad steps away from standing on a street corner. 

But this experience has shown me how lucky I am, and how lucky we all are, to have people in our lives who love us, and a wider ring of people in our lives who really, truly, care about us and hate to see us suffer. 

That is the lifeline. I’ll dare to say that is Christ. 

It is just love. Just kindness that matters. Hopelessness, true hopelessness, only comes when communities abandon those things. Because we are enough for each other. 

You guys have been enough for us. 
Thank you. 

We picked out the name Callaway because we liked the way it sounds. We couldn’t kick the Irish bounciness, mixed with the strength of a “c” name and the wispiness of the “y” at the end. 

But boy, does her name mean more to us now. 

Callaway means "pebble" or "pebbly place." To me, this infers a certain amount of difficulty, hardship, rockiness. We gave her the middle name, True, because we wanted her to know that truth is a part of her identity. She is good and true all on her own, and that doesn't depend on anything else she does or doesn't do. It's also our promise to her — to be true to her, no matter what. 

Together, this name is taking on a new meaning for me. In some ways, it's a paradox with her first name symbolizing a less-than-smooth place, and her second promising truth. She's experienced the pebbly place already (though they've felt like boulders and razor-sharp rocks), but through all of this, the people who already love her — her family, and this wide, loving community — are showing her (and us) all about her inherent truth. The truth in her that even the threat of death can't touch. 

Thank you for reading this. 

Keep being good to people. If you ask me, it's what we're here for. 

- Luke Farkas