Manga & Marrow - A Graphic Novel of Bella's Bone Marrow Transplant
The bone marrow transplant journey of 19 year old Bella, magna maniac & Fanconi anemia fighter.
DAY +251 - An Unwanted Hospital Overnight but Definitely NOT a Real READMIT
I'm sending this update from a place that's become all too familiar: the uncomfortable plastic parent's couch in a hospital room only this time it's at Children's Hospital of Colorado, just 30 minutes from home instead of 1000 miles. However, there's no cause for concern; we're simply here for an overnight sleep study to figure out why Bella still has trouble sleeping soundly, even though her health has improved in almost every other aspect. Despite this, the environment itself has triggered a resurgence of distressing emotions, and Bella is eager to return home at the earliest opportunity tomorrow (6am). Additionally, with her head currently swathed in gauze like a mummy's and adorned with no fewer than two dozen stickers, monitors, and electrodes relaying data to a fancy computer program that will tell us what's what, she'd love nothing more than to blow this popsicle stand, take a nice hot shower, and rest in the comfort of her own bed. As her stay will be less than 24 hours, we don't even count this one as an admission.
It's been some time, like a looooong time, since my last update and I do apologize for that. After our return from her 6-month appointments in Minneapolis in July, we dedicated ourselves to allowing Bella to simply allow herself to heal at her own pace, taking all the time she needs, and the frequent updates, even the need to find something to update y'all about, seemed to impose an unfair sense of urgency on her recovery. We've come to understand that Bella, consistently, since before she was even born, sets her own objectives and deadlines and they often do not comply with what is considered the "norm." Similar to how comparing one child's development to another's can make them feel insufficient, detailing her slow and steady recovery made Bella feel as though her progress wasn't enough. In reality, the way her body has healed itself after the total upheaval of a transplant is truly extraordinary and we know a full recovery will be in her future, when she determines she is ready.
Bella's lungs are still recovering from the pneumonia that caused pretty significant damage in April, which remains her greatest challenge. Yet, with an excellent pulmonologist here in Colorado, she is gradually making headway. We've combated the scar tissue, persistent congestion, thick mucus, and her difficulty in clearing her lungs with an array of tools, medications, and therapies. After six weeks, there's a glimmer of hope. Daily, Bella undergoes five inhaler treatments (three with albuterol and two with Dulera), three Aerobika treatments (using a handheld Oscillating Positive Expiratory Pressure device), and most significantly, three percussion vest treatments (similar to those for cystic fibrosis patients). These treatments are both time-intensive and exhausting.
Moreover, Bella has been proactively enhancing her endurance and strength by walking our dogs, Piper and Jax, each evening. She purchased a Google watch to monitor her distance. Initially, she could barely walk a mile, taking over 30 minutes, and would return home utterly exhausted. Nevertheless, she strives to extend her walks daily, even if by just .01 miles. The goal is to do a bit better each day, and she often succeeds.
Lately, Bella has managed to walk the dogs over two miles daily, sometimes for nearly an hour, ensuring both pets get their needed exercise (Jax has lost the extra weight gained during his transplant), and simultaneously, Bella's health gets a much-needed boost.
Bella continues to face challenges with her T-cell recovery. These cells act as the commanders of her immune system, and unfortunately, due to being taxed with the pulmonary challenges and some GI difficulties, they are recuperating slowly. We had hoped that by last month, her T-cell count would have risen enough for her to travel to Charlotte, NC for the Fanconi Anemia adult meeting. She aimed for a count of 100, the minimum needed to even consider travel, of course with full masking and all other safety measures, to stay in a hotel and meet a small group of her FA Adult peers. Sadly, Bella's T-cell count was only 73 two weeks before the trip. After discussions with her Colorado medical team, it became clear that reaching a count of 100 by her travel date was improbable. The news was heartbreaking for Bella and all of us. The isolation and missing out on an event that offers her a sense of community and normality significantly affected her mental well-being. Although she has recovered, as she always does, the adult meeting weekend was particularly tough for her.
Upon our arrival at the hospital this evening, Bella and I witnessed the Flight For Life Helicopter flying off into another beautiful Colorado sunset, bound for a destination unknown to us. It served as a subtle reminder that despite the hurdles Bella is facing, our situation could be far worse. I offered a silent prayer of gratitude that Bella is not here due to a critical condition necessitating helicopter transport or facing something even more severe and another prayer for the child the helicopter was en route to.
I will continue to share updates as significant milestones and special moments occur. However, during the periods of silence, please understand it's out of respect for Bella's desire to experience life at her own pace, without the pressure to accelerate recovery beyond what her body permits. We are deeply grateful for the check-ins, prayers, and unwavering positivity that envelops Bella, both physically and virtually. She cherishes the phone calls, text messages, and, when it's safe and suitable, visits from family and friends, although she is currently unable to travel safely (pending the restoration of her T-cells to sufficient levels). Your ongoing and steadfast support means the world to us, and we cannot thank you enough.
DAY +178 - END SCENE
Closing this chapter of our lives with a grateful heart.
Before we head back to Colorado this evening, Bella tossed her Chuck Taylor's into the Shoe Tree at the University of Minnesota Pedestrian Bridge, complete with absolute gratitude and the names of dozens of doctors, nurses, family, friends, FAmilies, and of course, Piper, who helped Bella make it through the past 6 months, etched into their soles.
Thank you all - every visitor, every caretaker, every facebook follower, friend, and card/gift/prayer/well-wishes sender. It's been a wild ride and we couldn't have done it without your support.
I'm not crying. You're crying. 😢
That's a lie. I quickly became a puddle of tears as I expressed to Bella just how proud I am of her strength, perseverance, and bravery.
The journey is not over. And we will be back, year after year after year and I'm certain the continued recovery will be anything but smooth. I promise to update when I can, but for now, we leave the memory of transplant, much like Bella's shoes in the tree, in the rearview mirror as we attempt to resume our regularly scheduled programming of life.
DAY +177 (PART 2) FREEDOM!
Bella is free! 7,393 days after a g-tube was first placed in Bella's tiny belly to ensure she could receive nutrition after being born with her esophagus unattached to her stomach, 2 months after this surgery was canceled leaving her heartbroken, and 153 minutes after she entered the OR today, Bella is now, finally, FREE from her g-tube! And as a bonus, the central line surgically implanted 6 months ago which has allowed chemotherapy, medications, blood draws, nutrition, and, hydration throughout her bone marrow transplant has been removed as well leaving her free from nearly every external medical device with the exception of the temporary Dexacom adhered to her arm which, interestingly, has now been reporting blood glucose levels solidly in the 300's for the past 3 hours since Bella was finally able to eat a substantial meal after nearly 48 hours of fasting for tests and surgery.
Surgeries and procedures went well this afternoon. Each team took their turn and then reported results to Ben and I as the next one in line took over and did their thing. The time actually went by quickly, with Ben able to busy himself with work as I did some crossword puzzles and watched Dateline.
Team Pulmonology reported inflammation and obvious signs of "something" in her lungs. There were no overwhelming visuals which would tip the scales towards either GVHD or infection so we will need to await the results of the levage cultures to determine next steps.
Gastroenterology Group started from the top and worked their way down, scoping and scanning and looking for anomalies. They found a few, especially in areas of the esophagus which are now bright pink rather than flaming red, but a paler pink would be preferred so she still has some healing to do. Thankfully though, the severe GI issies and apoptotic crypts we still believe may have been caused by Celexa and resulted in her inability to eat for several weeks, appear to have resolved. The biopsy results will tell us for certain, so again, we wait.
And last but not least, General Surgery removed both the central line and gtube, carefully closing the site where each had been, and leaving Bella with fewer holes in her body and a couple of stitches in each to ensure they stay closed.
Bella even left the OR with a little souvenir- a beheaded AIKO (her affectionate name for the central line). Apparently the part that was inside her body is considered a biohazard and not keepable. EMMA (the name she selected for her gtube like 15 years ago), was promptly tossed away with no request to keep her because it's literally disgusting what 8 weeks of stomach acid will do to a silicone balloon.
We are back at the Hope Lodge and Bella has been resting comfortably with just tylenol on board. Thus far, pain has not exceeded a 2 on a 1-10 scale with the central line site causing more pain than the gtube except when she coughs. We don't fly home until late tomorrow night and it is our hope that the additional 24 hours will make her flight a little more comfortable.
Thank you all for your prayers, calls, text messages, comments, and positive energy sent this way for Bella today. All things considered, especially given that half the world seems to have shut down so Microsoft stuff can take a day off, today was a good day for Bella to enjoy a first taste of medical device FREEEEDOM!
DAY +177 - ONE HUNDRED SIXTY EIGHT MINUTES
168 minutes, 10,080 seconds, or, approximately 3 Dateline Murder Mystery episodes. We just said our "see ya laters" to Bella and left her in the competent hands of a remarkably large team of doctors and surgeons and nurses and techs, and we now wait and pray and hope and eat copious amounts of emotional comfort food for the next 168 long minutes, the estimated OR time, until we receive the news that all 5 procedures planned for Bella today were completed, successfully AND, uneventfully.
When asked how she's doing, Bella just responds with a request to be drugged to sleep ASAP so she can wake up and be able to eat. After being unable to consume anything substantial since Wednesday evening due to the fasting blood test yesterday, having only a small meal yesterday evening, and then enduring the cruelty of a colonoscopy prep last night, she's not only exhausted, but she's ravenously hungry and if she is forced to wait much longer, she may rip off her own arm and eat it like a turkey leg at Disneyworld. Can't say I blame her!
So now, Bella is off to the OR and after what I'm assuming was a very intense game of Rock,Paper, Scissors, amongst the specialists, they have decided the bronchoscopy (pulmonologist) will be first, followed by endoscopy and colonoscopy (gastrointeroligist), and then the closure of the g-tube site and the central line (general surgeon).
Please keep Bella in your thoughts and prayers and send positive energy Bellas direction for the next 168 minutes.
DAY +176 - PREDICTABLY UNPREDICTABLE RESULTS
7:30 AM CST is seriously too damn early for this Mountain Time family but nonetheless, we showed up, on time, at the hospital this morning despite significant grumblings from the peanut gallery, aka Bella.
Growth hormone testing may seem obsolete for a clearly non-adolescent who, despite her petite size, stopped growing several years ago. When Bella was a child, this same growth hormone test determined she was deficient and resulted in a daily injection of human growth hormones for nearly 7 years. As she was a small child, maybe 7 or 8, when these painful injections began, we bribed her with 2 quarters each time she did her shot without crying. She eventually earned enough money to split the cost of an iPad with us, providing a much needed distraction during endless appointments.
Around 16 or 17, we were told Bella's growth plates had closed ending her potential fornfurther growth and to us, it made sense to then stop the daily shots and routine visits to the Endocrinologist as we had bigger issues issues to deal with, ya know, like a bone marrow transplant. However, we recently learned that normal growth hormone levels are necessary even in adulthood as it helps maintain bone health and prevent osteoporosis, especially after a bine marrow transplant.
So, we again found ourselves testing Bella for growth hormone levels this morning - a 3 hour blood test which includes 1 injection of medication into Bella's bicep, 7 blood draws (thank GOD she has her central line still) and multiple blood glucose tests when she became symptomatic. We don't know the results yet, but the medication clearly had some effect on Bella as her glucose eventually dropped below 60, she became overheated and lethargic, and her blood pressure dipped too, resulting in a call to the doc to determine if they should discontinue the test.
Thankfully, just as Bella was hitting a wall, a very familiar face showed up in her infusion suite. It was Shay, one of Bella's very favorite nurses from the 4th Floor! Her surprise visit actually caused Bella's blood pressure to rebound and, we assume because Shay is so sweet, her glucose jumped back up just enough to finish out the test! Thanks for the visit, Shay!
While sitting around waiting for the q30 minute blood draws, Dr. Wagner came in for Bella's 6 month post BMT check up. Overall, he feels things are going well but of course, is concerned about the endocrine and pulmonary issues and the potential for either to be GVHD. He would like to see her T-cell subset counts a bit higher but attributed their slow rise in numbers to a handful of factors including a slight DQ mismatch on the HLA typing (essentially, Kennedy and Bella are a perfect bone marrow match however, one of them somehow inverted their DQ1 antigen), the previous struggles with pneumonia and ongokng lung issues, and perhaps even the Celexa debacle that suppressed her counts for a while. More time, patience, and continued adherence to protocols for keeping Bella away from crowds, germs, and other potential enemies was his recommendation. She gets to decrease the dosage of one medication slightly but overall, the advice is to stay the course.
In the Fall, ther is an Adult FA meeting that Bella would LOVE to attend as it is a unique opportunity to gather with peers from around the world for support, encouragement, and enducation. We discussed Bella's potential attendance, which would mean exposure to hundreds of people. Dr. Wagner didn't say "no" but he did set a high bar which may be unachievable. IF, big IF, her CD4 is above 100 (it's currently 71), we.can discuss it. However, if the number is lower than 100 or if anything at all shows signs of GVHD, it's a hard no.
After wrapping up with Dr. Wagner and the Growth Hormone Testing, we headed up to Endocrine. Bella struggles with maintaining a healthy blood glucose level for unknown reasons. It may be simply an intolerance, could be a sign of potential diabetes in the future, or it could be that she's just sensitive to slight fluctuations. So for the next 10 days, Bella gets to wear a continuous glucose monitor on the back of her left arm that will produce a record of the highs, lows, and normals. She didn't even flinch when the Dexcom pod was applied (it has a small needle in it), and was fascinated by the process as she's seen many YouTubers share their experiences with the Dexacom.
It takes 30 minutes for the sensor to warm up, but as soon as it did, we received an alert that she was "dangerously low" at 42. Eek! This is supposed to be a "blind test" meaning we dont treat the highs or lows but I did give her an apple juice because, seriously, we were already running late for our final appointment if the day and had no time for her to pass out. I'll be interested to see what the 10 day results yield.
Ournlast appointment of the day was a Lipid Clinic because apparently when your cholesterol jumps from normal before transplant to the 300's 6 months later, you earn a VIP slot with Preventative Cardiology Care. Fun.
Normally, Bella would be stated on a stating, like Lipitor, due to the alarmingly high cholesterol spike. However, statins and posaconozole (an antifungal Bella is on for one year post BMT to prevent fungal infections like the very scary aspergillis) are a big no-no as they are contraindicated due to potential for liver and kidney damage. Soooo....there goes that easy fix. Damn.
Other options were discussed including something called PCSK9. Unfortunately, that must be injected once per month which means either we fly up here every 4 weeks so the docs here can do it, or we get a referral for a cardiologist in Colorado and ask them to prescribe it at her initial visit. The problem here is that most cardiologists can take up to 6 months to on-board a new patient.
The doctor required us that in the next 6 months, Bella heart will not explore due to cholesterol overload. The purpose of statins and reducing cholesterol is to prevent long term damage to her heart. So, as the posaconozole will be discontinued in 6 months, this opening Bella up to use the Lipitor, it wa suggested that we make some slight dietary changes (nothing major as we need to maintain her weight) and revisit the Lipitor option at our 1 year visit in January 2025.
And then a funny thing happened on the way home (to Hope Lodge) from the hospital. As mentioned, Bella's overall cholesterol had jumped from normal (158) before transplant to high (333 - anything over 200 is 👎) in June. And the bad cholesterol (LDL) went from 86 (normal) to 218 (over 100 is HIGH). We made a few slight changes (thanks, Stephanie Kagan!) to her diet over the past weeks while we were home but nothing major - more fruits and veggies, less processed food, etc. While discussing the statin conundrum with the doc, results from today's test were still pending so all.of the talk was hypothetical, assuming her cholesterol hadnt changed much from 6 weeks ago. Of course, as we were walking out the door, the numbers populated in her Mychart.
202! Bella's overall cholesterol dropped over 100 points and is just slightly high! And her LDL, the bad cholesterol, is now 99, under the threshold of 100 for a healthy range. We will still follow up in January, but I'll sleep better tonight knowing she's not a ticking time bomb of sticky, waxy gunk clogging up her arteries!
Surgery is scheduled for 12:30 start tomorrow and will include 5 separate procedures performed by 3 different teams of doctors. Congrats to whoever coordinated that circus as I can barely get 3 humans out the door at the same time in any given day. A colonoscopy and endoscopy will be the responsibility of the Gastrointeroligist, a bronchoscopy is on the agenda for the Pulmonologist, and the general surgeon will both remove her central line (she has requested to keep the device after removal) and then remove and FINALLY close, for good, the g-tube site which Bella has resented for as long as she can remember, except of course, for when it was needed to save her life occasionally.
I'll admit to being kind of emotional with tomorrow's remarkable milestone in Bella's life. Bella has, literally, had a g-tube since the day I met her, the day she was born. It's the reason she's alive today. Save for a short stint when she was 5ish when it was removed for about 6 months, the gtube has ALWAYS, ensured we had a way to easily provide nutrition, hydration, and medication, even when Bella was at her most vulnerable, weakest, and sickest. She's most definitely ready for it to go, but I'm not sure I am. No matter though, tomorrow we say goodbye to 2 decades of g-tube reliability and hello to Bella 2.0, who has proven for several years now that the tube was not needed, self-sustaining her body, health, and nutrition, without a fallback plan. Thankfully, she's stronger and more confident than I'll ever be and most definitely, SHE'S GOT THIS!
Please storm the Heavens with prayers for our Fierce FA fighter, Bella, tomorrow as she puts on a brave face to once again enter the OR arena, endure the procedures and pokes and prods and slicing and dicing needed to release her of the constraints her g-tube and central line have on her, tolerate the scopes and cameras necessary for internal imaging, and safely come out on the other side. 🙏 ✌️ ❤️
DAY +175 - RISK VS REWARD
While Bella was in her one and only appointment today, I drafted a likely-longer-than-necessary email to Dr. Wagner requesting guidance on a plea Bella has repeatedly made. Bella has been begging, BEGGING to go on the rides at the Mall of America since we arrived in the Twin Cities yesterday morning. Hell, shes been negotiating the rights to ride since March when her cabin-fever really kicked it into high gear, but I didn't want to be the bad guy and tell her "no," so I though I'd toss Dr Wagner under the bus and make him do it.
He didn't. S**t.
I attached screen shots to the email of Bella's most recent T Cell Subset blood test, assuming Dr. Wagner has some concrete count parameters that Bella wouldn't meet which would automatically preclude her from safely visiting the mall, entering the cesspool of a ride que, and then sitting in an likely un-recently-sanitized seat while being whipped, flipped, spun, and sped along a thrill ride track just for the fun of it.
Dr. Wagner's response was a solid.....maybe. After promising to mask 100%, ensuring we'd use antibacterial wipes on everything, and swearing she'd adhere to any other recommendations he made, Dr. Wagner replied, "Her absolute CD4 counts is 71 which is lower than I'd like it to be. I guess if the MOA is not too crowded, and Bella does everything else, it would be ok but there is some risk..."
So we took the risk. We grabbed an Uber to the MOA, walked in while shielding Bella by positioning ourselves either in the front of or on the sides of her like the Secret Service ought to be protecting a President, and proceeded to Nickelodeon Universe at the MOA.
Honestly, I was hoping Dr. Wagner would say "no" because I'm scared, terrified, of Bella being exposed to or acquiring one of the dozens of communicable diseases most humans are immune to but Bella cannot currently combat. This was a good exercise in patience, letting go, and trust for all of us.
We negotiated 2 rides for Bella - checking out each one prior to ticket purchase to ensure there were no shoulder harnesses (that could put pressure on her central line) and no inversions (she still gets nauseous). The Log Chute met the criteria and Bella had promised our neighbor, Tara, a walk down memory lane by riding that one and her 2nd choice was Fairly Odd Parents Coaster (perhaps because WE are the fairly odd parents? 🤷♀️). Spongebob Rock Bottom Plunge, Airbender, and TMNT Shellraiser didn't make the cut due to their harnesses so those will have to wait for another trip.
I waited through the 20 minute line que of Fairly Odd Parents and explained the situation to the ride operator once I arrived on the platform. The staff was super accommodating, let Bella and Ben enter through the exit, and gave me a little extra time to wipe down the seat with antibacterial wipes before Bella was seated. I'm certain the other riders thought I was crazy but, aside from some odd stares, IDFAF. Our extreme diligence is necessary for Bellas safety.
Bella was THRILLED with the drops and spins and dips and speediness of the thrill ride and frankly, watching her face and knowing she had a huge smile behind her mask, so was I. When the ride ended, the staff asked if we wanted to go again. Bella nodded and off we went. By the end of Round 2, I was nauseous but cannot confirm if it was the ride or just thinking about germs and bacteria and other scary miscroscopic enemies.
Next up was the Log Chute, our neighbor Tara's request and a favorite of Bella's. This time, they let us all enter via the exit and immediately seated Bella and Ben on the ride. Same scenario with the wipedown only, Ben did it this time. Staff was once again super sweet and helpful. After Bella exited the ride, I did wipe down the small splatters of undoubtedly unclean water that had splashed onto her clothes, even if only to make myself feel like I'd just rescued the princess from potential peril.
We capped off our visit with shoe shopping as Bella's Chuck Taylor's have seen better days. 2 pairs of new shoes and a quick stop at the airbrush station for a custom Stitch beanie later, and we headed back to the Hope Lodge, hoping and praying no new friends were hitching a ride and planning an attack on on Bella's CD4 army before they can rally sufficient troops.
I think we did OK. I was nervous, but didn't freak out or scream profanities at any oblivious parents if their sniveling child got within my imaginary bubble perimiter of Bella's safety. I more than adequately wiped down any surface Bella touched, but did so without causing any obvious scene of frenzied disinfection. And overall, we had a wonderful time.
The reward of seeing Bella's smiling eyes peeking from behind her mask and the hope that, for perhaps a few moments, as we were focused on the stomach drops or the increases in dopamine and adrenaline in our bodies, Bella may have momentarily forgotten about the hell she's been through for the past 6 months, was most definitely worth the calculated risk we took today.
(That is, as long as she doesn't spike a fever in the next 24 hours because if she does, I'll immediately resign as Medical Manager before Dr. Wagner gets a chance to fire me! 🤣🤣🤣)
DAY +174 (PART II) - PULMONARY PROBLEMS WITH POTENTIAL FOR PERCUSSIVE PERSUASION
If Culver's were announcing a "Flavor of the Day," for Bella's Transplant Journey, Pulmonary Praline would win today, hands down. All 4 clinic appointments today focused on Bella's lung function, or rather lack thereof. Those cute, pink, spongy organs resting on opposite sides of Bella's heart tucked away safely in her rib cage, along with their attached trachea, have somehow migrated to become a real pain in her ass! Also, now I'm suddenly craving ice cream, anyone else?
After an uneventful flight from Colorado early this morning (5am), we Uber'ed straight to the hospital and made it with plenty of time for her first appt at 9:30. The next 2.5 hours were spent literally eating, sleeping, and breathing all aspects of Bella's lung (dys)function. She breathed as best she could in the booth, walked her 6 minute walk test like a champ - increasing her.distance significantly, and inhaled and exhaled a.gazillion times, as directed.
Bella followed all testing directions to the T, has been taking her 5 inhaler doses on the daily, and put forth a great effort in her walk test, however, her PFT scores still declined, and unfortunately this means, her lung function remains worse than pre-transplant. It could be an ongoing infection, it could be GVHD, it.coukd be damage from either of the above options, or, a combination of both.
Dr. Goldfarb, unable to pinpoint the actual cause until he sneaks a camera into the lungs while she's under anesthesia on Friday, has an aggressive plan of attack to whip those lungs back in shape. His plan is to place zero trust in Bellas lungs to behave themselves at this point because theyve shown themselves to be rebebellious for a full 3 months so instead, he will protect her lungs from further damage by either source until the true Spartacus reveals itself.
I was taken aback by the intensity. of this plan however these treatments should not create additional chaos but will help us move towards the goal of helping Bella's lungs heal and allowing her to breathe better overall.
First, as mentioned, Dr. Gdfarb is going to take a look inside her airways with a bronchoscopy (aka bronchoalveolar levage) procedure on Friday which now increases the sedated procedure count on Friday from 4 to 5. He will also perform a "washing out" of her lungs and collect samples of said "wash out" to test for bacterial infection. Cultures can take anywhere from a few minutes to several days.
Next, Bella will be starting a thrice daily nebulizer inhalation treatment to help medicinally breakup any un-pink, unsquishy tissues in her lungs. She's had some practice nebulizing during her previous Pentamadine infusions so I'm sure she'll quickly get the hang of this - well, perhaps.
I say "perhaps" because, as she is nebulizing the meds needed to break up the gunk, she'll also be sporting a fancy new (hopefully purple as Dr. G said she might be able to select the color) percussion vest, also known as a high frequency chest wall oscillator, which will rhythmically vibrate to help break stuff up, again 3 times per day. I'm certain she'll sound quite Darth Vader-y while attempting to juggle the nebulizer as she's being percussed by the vest.
The final step in Dr. Goldfarb's diagnostic journey through Bellas lungs will be polysomnography, more commonly called a Sleep Study. He has concerns that she may not be sufficiently oxygenating her blood while she sleeps and thus, a complex series of wires, which ironically make it nearly impossible to sleep, will be attached to her head and measure brain waves, oxygen levels, heart rate and breathing as she sleeps. This can and will be done in Colorado as it's not urgent but will provide us some additional insight. If her saturation is low, she may need supplemental oxygen overnight.
That was a lot today. Like, a whole lot. And given that we were all running on 3 hours of sleep, half of which was awkwardly and inefficiently achieved on an airplane, we plan to process it all further tomorrow when we anticipate clinics will start reaching out to.source the equopment needed for Bella to begin these new therapies.
Tonight, we are snugly, holed up at the Hope Lodge for the week as our beloved Ronald McDonald House is, sadly, full. Hope House is like the adult version of RMH and generally utilized by cancer patients. Wrap your mind around that sobering fact - Bella qualifies to stay here because technically, Fanconi anemia is a "cancer causing" disease. Damn, that stings a little because it reminds us that while the transplant cured the bone marrow failure and we work to clean up the sh*tstorm it left behind, she still faces a lifetime of an outrageously increased risk of cancer. Ugh.
Just a single 8:45am appointment on the docket tomorrow but that agenda came with a warning that add-on requests from anyone on the team can and will fill in our free time, if needed. For now, I'm signing off and praying these heavy eyelids will let me cram at least 2 days worth of much needed sleep cycling into the next 8 hours. ✌️ ❤️ 😴
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