Clicking Your Heels Together

I’ve been holding out on you. Not because I wanted to keep Justin’s progress a secret, but subconsciously, I thought if I said it out loud (or in print), that I would jinx it. BUT – WE ARE HOME!

Much to our surprise, Justin went home a week earlier than we had been told – on Monday March 27th we packed our things in room 54, once again, and headed toward home. I can’t even begin to describe how happy I was to be leaving WITH Justin – it had been over six weeks since I had him in the car with me. We were nervous, but so ready to start the next phase in his recovery.

The antiviral medication Justin had been on was making headway on the CMV virus, but the numbers continued to bounce around – this meant that I would be administering three separate IV medications to him daily instead of the one IV I had been trained to administer over a month prior. It still amazes me that caregivers are administering IV medications to bone marrow transplant patients every day, it seems like something that shouldn’t be trusted to someone outside of the medical profession. After another session with our visiting nurse, I felt confident in my ability to safely connect Justin to his medications and quickly caught my groove.

Four days after discharge, Justin had a clinic appointment with his outpatient team. This was the first time he had blood work done since leaving the hospital – it was the moment of truth. If anything was wrong, he would be going back to the BMT unit and not back home with me. I was definitely nervous. Walking around the hospital was overwhelming for Justin’s developing muscles – he was exhausted before we even made it to his appointment. Taking a nap in the exam room, we waited for the lab to process his blood and give us an indication of how he was recovering at home.

His counts were phenomenal. His platelet count had more than doubled, his white blood cell counts were in a “normal” range, and his blood levels were holding strong. It was the best-case scenario. A couple of adjustments to his medicines and we were on our way – HOME.

Leaving that first appointment was incredibly liberating. We were only in the building for three hours, and it opened my eyes to the fact that being home was going to stick – we weren’t just waiting for his next hospital stay. I felt relief wash over me as we pulled out of the parking lot and talked about how we would spend the rest of our day.

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We’ve been back to the clinic one additional time, and Justin’s numbers continue toremain stable, his platelet counts are continuing to climb. His CMV numbers are slowly decreasing, which means he will continue with an additional week of the foscarnate, but the improvement in his blood counts means he can also balance that with the pill form antivirals. His team is continuing to find the balance between tapering the steroids (that feed the virus), and administering antivirals that are either damaging to the kidneys or the bone marrow. It’s a delicate line to walk, but progress is being made.

Being home has been great for both of us, Justin seems to get stronger every day, and we are both resting to make up for the nine weeks spent in the hospital. We’ve spent hours watching Netflix and catching up on our DVR’d shows, snuggling with our four legged children, and slowly reintegrating ourselves into the real world. There’s no place like home.

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The Thick of It

I have written this post three times. Never actually finished it, let alone publish it, but I’ve written down the details of the last three weeks in several different ways in an effort to keep you updated on Justin’s recovery.

There are too many little details, too many random things that, even now, I am forgetting about, too many hitches in the timeline, and too many instances where we thought we’d be soon heading home. Too many days where we were more focused on our emotional well-being as we looked “two more weeks” in the face.

I last left you after Justin had a GI bleed – ultimately caused by the blood thinners that were changed from an injection to a pill form because of an authorization protocol with our insurance company. (Side note: Remind me to tell you the thoughts going through my head three weeks later as I was sorting through my mail to find the letter from our insurance company stating that his shot was no longer “authorized”). The day after his colonoscopy had an IVC filter placed in his…chest?…to prevent the blood clot in his leg from traveling and causing issues with his lungs and heart. Essentially, he spent two days completely wiped out from anesthesia – however the rest was necessary. Discharge was around the corner (again) and the entire team was ready to send him on his way.

This is where I am going to gloss over some details, because, frankly, I was so exhausted during the next two weeks that I honestly don’t remember everything and reliving it just seems awfully counterproductive.

Late on evening, around 1:30am, Justin collapsed in his nurse’s arms. He never lost consciousness, but his body gave out underneath him. Around 3:45am, while in the bathroom, Justin again collapsed in the arms of his nurse, and this time a medical assistant. While it seemed he never lost full consciousness, he was not responsive to questions for about 10-15 seconds. Once he was sitting and off of his legs, he came to, a little groggy but he understood, for the most part, what had happened. He saw multiple doctors in the early morning hours, got a CT scan to check for possible seizure activity, and got very little sleep. Over the next 24 hours the entire plan for Justin shifted. His body was weak, deconditioned, and his muscles weren’t used to actually holding up his body. He now had to focus on building up his muscle mass again, retraining his body and his blood vessels.

The next morning brought us one of the greatest gifts we’ve received in this whole fullsizeoutput_ceexperience, Annie. She walked in and took over his care planning – got his diet upgraded to a full diet so he could eat whatever he wanted, got him scheduled with the Physical Therapy team to get some exercises to work on, and had him sitting up in the chair for the majority of the day. I couldn’t have been more grateful. Annie was with Justin Thursday, Friday, and Saturday – pushing him to fight his fatigue, and build up that strength that he needed to go home. The collapsing was stemming from the deconditioning in his legs – all of the blood in his body was rushing down to support the use of his muscles that haven’t been used in weeks. While our fourth discharge day had come, and gone, we saw the light at the end of the tunnel, and we knew home wasn’t far away. Or so we thought.

The high doses of steroids that Justin was on to recover from the Graft Vs. Host Disease of the GI tract and skin had done a number on his body. Steroids feed viruses, and one virus in particular, had been feeding on the steroids being pumped into Justin for weeks. CMV is a virus that typically everyone has inside of them, usually activated by immunosuppression – HELLO Bone Marrow Transplant! Justin’s CMV numbers were on the rise, not to a level of concern, but to a level that needed to be treated with IV medication that cannot be administered at home. The pills he had originally be on to treat the virus deplete blood counts – ultimately “damaging” the bone marrow. I wanted to scream. In fact, I’m pretty sure I did. Here we were, again, so close to heading back home and yet another complication came up that kept us in the BMT unit.

In one day, Justin had his port removed (yanked) from his chest due to a bacterial infection in one of the lines, had an IV placed in his arm (that took at least 8 painful attempts), and was told that he needed to stay in the hospital longer due to the CMV virus increasing and needing to clear the bacterial infection to get a new central line. I was home for the night, but am still, two weeks later, eternally grateful for my sister who was stay with Justin that night. She held his hand during the port removal procedure, listened when the doctors spoke to her, helped Justin understand (and remember – thank you, Ativan) the new issues that they addressed, and kept up with me via text for over 24 hours. I was a mess, but I was able to sleep, eat, and recharge because she was there.

The medication Justin started (foscarnate) is a heavy antiviral medication, that is toxic to the kidneys, so while it would take care of the virus quickly without damaging his blood counts (bone marrow), it required a lot of kidney function monitoring. Feeling stronger physically, and with this new crazy med being administered twice a day, Justin and I were confident that discharge was around the corner – again.

On Friday (3/17) morning during rounds, the doctors talked about how great Justin was recovering, and in what seemed like the same breath, said that due to the nature of the foscarnate and how pill antivirals attack the bone marrow that we could expect to be in the hospital for at least another two weeks. We were heart broken. There’s no other way to describe it, our excitement and motivation to push forward evaporated. Without our usual nursing team on staff over the weekend we felt alone, desperate to go home, and just defeated. It took two days for us to get to a comfortable place again. By Sunday, we were determined to control what we could – and that was getting Justin’s strength back. We set goals for exercise, eating, showering, and staying out of the bed. We talked about what we are looking forward to when we get to go home, and what we would miss about being here. We created an environment where it was okay to be here for a little while longer.

On Monday they ran Justin’s CMV numbers again – they had gone from 8,000 down to 500 with the week of foscarnate – it was working. While, the number is not low enough to warrant stopping the drug, or going home, we are headed in the right direction. They have tested his numbers again today and we are hopeful that they will continue to decrease and we will soon begin talking about leaving this room we’ve been in for eight weeks.

IMG_1798Tomorrow is eight weeks since Justin was admitted to the Bone Marrow Transplant Unit, seven weeks post-transplant. We went home for approximately 40 hours, and now have officially been here longer the second time around than with his original transplant stay. We have spent half of his 100 days post-transplant in the hospital. I suppose there’s some good to that – he was able to get through the worst of it with a medical team behind him 24 hours a day. We didn’t have to go through any of this while at home, we can go back and it will be a place of comfort, recovery, and relaxation. They told us every transplant journey is different, boy, were they right.

Posted in Bone Marrow Transplant, Graft Versus Host Disease, Gratitude | 12 Comments

The Curse of Discharge Day

There’s an element of tempting fate when you start talking about discharge from the BMT unit. At the beginning of last week, the team started to estimate a Friday release date for Justin, we were finally talking about going home again. A little more prepared this time, we were nervous to take this show on the road, but he was feeling better and we knew what it would take to be home. Ah, Home…

Recovering from GVHD of the gut is a slow and boring process. Justin’s diet was increased day by day depending on how he was handling certain foods and medications. By Wednesday evening he was moved to the GVHD 2 diet and all of his medications were moved from IV to pill form. Thursday was about moving around the unit and monitoring his progress in the hopes of going home the following day.

And then Thursday happened. Justin started Thursday morning by realizing one of his favorite nurses, Annie, would be on his service for the day. She came in through the curtain with arms her arms in the air like she was part of the Showcase Showdown on The Price is Right. I was so happy to see her. Annie was the nurse that administered Justin’s transplant and we hadn’t really seen her since, she was such a big part of how special that day was for Justin.

It took less than 30 minutes for all of us to realize something wasn’t right – Justin was experiencing pain in his abdomen, more nausea than usual, and Annie was beginning to see blood in his stool. This is definitely a cause for concern with GVHD of the GI tract. The team came in for rounds and started discussing causes, tests, and treatment plans. Justin was heartbroken. A day that was supposed to be about last minute monitoring before leaving had turned into pain management, test preparation, nausea control, and back to a “nothing by mouth” diet. His doctors seemed almost as crushed as we were. Almost.

There were four theories on the table for the quick change in Justin’s stability, some much scarier than others:

Theory #1: The blood thinners that were switched from injections to pills could have caused the bleeding. (Justin has a blood clot in his leg, otherwise he would not be put on blood thinners while his platelets are already low). This is the least scary option.

Theory #2: There could be an ulcer that began to bleed. This is the second least scary option as an ulcer could be cauterized during his colonoscopy.

Theory #3: There are two viruses that we all have inside of us that only become active when your body is immunosuppressed. Between the Immunosuppressants and the steroids Justin’s numbers for a virus called CMV started to increase – not anywhere to the “level of concern” but they were increasing. This virus can cause sores in the GI tract and those could be causing the bleeding. This is the second most scary option as this virus can be resistant to medications.

Theory #4: Justin’s GVHD got worse and the steroids he was on for the week just masked it instead of treating it. This was the scariest option.

In order to have a clear idea of what theory was actually causing the bleeding and pain a full colonoscopy needed to be done, quickly. Thursday evening soon became about colonoscopy preparation for an early morning procedure. Around 7pm Annie brought in the jug of prep solution that Justin needed to finish before midnight. One sip in and we knew this was going to be a long night.

To make a long (and disgusting) story short – Justin’s procedure was pushed back to Friday afternoon so that he had ample time to prep. Every time we thought we were in the clear (pun intended), he was instructed to drink more. It took him 18 hours to drink over 6 liters of colonoscopy prep fluid. By the time he was ready to go we were both exhausted. They wheeled him down at about 3pm Thursday afternoon, after which Annie put a “Do Not Disturb” sign on his door and instructed me to sleep. I didn’t argue with her.

With no obvious signs of increased GVHD or an ulcer to cauterize during the procedure, Justin’s team started running with Theory #1: the blood thinners caused some issues. They scheduled a second procedure for Friday morning to have a filter placed in the vein leading to Justin’s lungs to keep the blood clot from traveling and causing any issues.

Justin really does have the best team with him, by Saturday afternoon his PA, Brittany, was pushing for answers from the pathology department. She, like us, was not interested in waiting until Monday for results. Preliminary readings determined that his GVHD, while present, was no worse than it was a week ago – our highest concern had been scratched off the list. Later in the day she came back with more news – pathology reported no signs of the CMV virus, the second scariest option was also off the table.

By this morning (Sunday), all of the reports have come back and his team is confident that it was the blood thinner medication switch that caused the bleeding. The switch from an injection to the pill form was prompted by our insurance company who would not approve the shots until various pill forms of the medication were attempted. Brittany assured us that this would no longer be a problem – she said so with a big smile on her face. I know, without a doubt, that she went to battle for us yesterday.

After a horrible Thursday and Friday filled with colonoscopy prep, the actual procedure, anesthesia medication induced sleep and a Saturday of filter placement followed by more anesthesia mediation induced sleep, Justin is awake (well, here and there) and looking better today. His diet was advanced off of the clear liquids back to GVHD 1 – which means he gets his beloved sliced peaches, rice, potatoes, chicken, and broth. His growling stomach was overjoyed to have a breakfast of applesauce and peaches.

At this point, the plan is to slowly get Justin back to where he was on Wednesday: advancing his diet and taking all medications in pill form. I hesitantly asked Brittany today when we might be looking at discharge and she hesitantly projected the end of the week. She and the doctor both laughed because of how last week went, but they are confident that they have pinpointed the issues that dictated this extra week’s stay.

day-3-2Today marks day +30. Justin has officially been in the hospital for five weeks and two days. He was discharged once, readmitted, and 24 hours away from a second discharge. To say this process has been an unexpected rollercoaster would be the understatement of the year. Thanks, as always, for your support – I am hopeful that soon you will be getting updates from us at home.

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Graft Versus Host Disease & Our Most Asked Question

graft-versus-host-disease-our-most-asked-questionWell, the last you heard from me we were headed home and I was going to get to write you an updated post from our comfy couch. Things didn’t go quite as planned. Being home, while a little more comforting was incredibly overwhelming for both Justin and I. He was feeling okay when he was released late Friday evening, but the reality of not being monitored 24-hours a day by a medical team sunk in pretty quickly. By Saturday morning he was feeling a little worse and we tried to manage everything from home. A few bumps in our new routine, but we made it through Saturday, including my new level of caregiving: administering IV medication through his port. We woke up Sunday still tired, he was feeling a little worse, and by the time the visiting nurse arrived around 2pm, he had spiked a fever – one of the items on the list of “when to call the BMT team ASAP”. We called and were given instructions to head to the ER for admission back to the BMT unit.

A little scared, we gathered some things and headed back toward Ann Arbor. Due to the nature of being a BMT patient, they were quick to get Justin in his own room and to start monitoring his vital signs. The fever was gone, but concerns of an infection had the staff running tests for four hours before we made it back up to our home away from home.

Laying down in the room we had just left less than 48 hours prior was a little surreal, like the highly emotional and overwhelming two days at home never happened. We found comfort in this little room, instead of frustration that we had found as we were preparing for discharge. A questionable night’s sleep was between us and seeing his doctor for some answers to this next phase in Justin’s recovery.

Early Monday morning Justin’s primary transplant doctor came in to examine him and give us some insight. While they had not found the exact answer to why Justin was back in the hospital already, he had a theory: with Justin’s severe lack of appetite, nausea, vomiting, and cramping in the stomach it was looking like he might have Graft Versus Host Disease of the gastrointestinal tract. Essentially, Justin’s new bone marrow cells were fighting with the cells in his tissues, his body was trying to reject the new cells. After a day of tests, it was concluded that Justin had, indeed, developed Graft Versus Host Disease (GVHD) of the GI tract.

I know this sounds scary, so please, I beg of you, let me explain based on how Justin’s doctors have explained things to us – stay away from google and other “sources” of insight as to what GVHD means.

What is Graft Versus Host Disease (GVHD) – the Emily version: GVHD is essentially the tissues in your body rejecting the new bone marrow cells that have developed after transplant. It can be displayed in infinite ways, most commonly in the heart, liver, lungs, GI system, or skin. GVHD is expected for most to all BMT patients, in fact, doctors look to GVHD to make sure that engraftment has actually happened. It can be a sign that things are starting to function. If not controlled, GVHD can be very dangerous, even fatal. This is why when Justin was released last week we were given a packet of information giving us a list of incidents that warrant an immediate call to the BMT team. They are fully prepared to see every discharged patient back in the unit at some point.

By Tuesday morning, Justin was being treated for GVHD of the GI tract and skin. He was put on a course of antibiotics, steroids, anti-rejection medications, immunosuppressants (to aid the new cells in fighting), and lots of fluids. He was put on a clear liquid and eventually, a nothing by mouth diet. In the last couple of days, he has improved quite a bit, the nausea and pain in his stomach have subsided, his rashes are starting to clear up, and he is more alert and active. He has a long road still ahead of him as his team starts to pull back on his medications and monitor his body’s response. He is expected to remain in the hospital for at least another week, most likely two, they will begin evaluating discharge after he spends a couple of days off of the steroids and additional medications.

So the question of the week: Is this “Normal”? At this point, there really is no “normal” – each individual responds to a bone marrow transplant differently, GVHD has no “normal”. All I can say is that GVHD is expected in some form and all the doctors can do is monitor it closely, treat it, and see how the body responds. It’s a long, boring process, but it’s a necessary process.

Justin is improving, already looking better than he did at home. A little lighter from a liquid diet, but his positive attitude is beginning to resurface – he laughed for the first time in a week when a new doctor asked if I was his mother. He has been given the okay to introduce one solid, starchy food into his diet today, he chose potatoes. If his GI system tolerates the potatoes well he will be able to introduce new (bland) foods every couple of days. For now, we’re taking it one day at a time.

Thank you, as always, for the cards, prayers, positive vibes, and text messages. For those of you contacting Justin directly, he hasn’t been on his phone for the better part of the last week. It is hard to focus on the screen and he is often napping so he misses texts – please don’t take it personally and know that once he feels well enough to keep up with everyone, he will.

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Bottoming Out

bottoming-outJustin has officially been living with his new stem cells in his body for a week. To say the first week post-transplant was a rollercoaster would be an understatement.

The transplant itself, as I mentioned last week, is rather uneventful. The two days following transplant were also rather uneventful, medically speaking. Justin had a great couple of days after the procedure, his sister stayed with him over the weekend and he had a rotating list of visitors to come and keep him company. We even celebrated his new birthday with dinner and cake – Justin was feeling well, but both of us knew that just around the corner would be when the real fight started.

In the world of bone marrow transplants days are measured based on their relation to the actual transplant day. Transplant day is Day 0. Everything before is a negative day, everything after is a positive day. Around day +2 his counts started to drop slowly, and by day +5 he had pretty much hit rock bottom in terms of the numbers. This is all to be expected, bottoming out is a very important part of the engrafting process.

As Justin’s body begins to build itself back up using his new immune system he has experienced fevers upwards of 103 degrees – spiking and breaking on a continual rotation. Low platelet counts means infusions in the early morning hours after the fever breaks. Headaches, body aches, nausea, mouth and throat sores, frequent diarrhea, and overall fatigue are all par for the course, and he’s had them all. Justin’s team treat each symptom as they arise and are constantly monitoring his progress and condition.

Over the next couple of days Justin’s counts will slowly begin to start rising as his body begins to repair itself with the help of the medications and patient protocols to protect his body as it rebuilds. Every day Justin is expected to brush his teeth (twice), rinse with salt/soda (every time he goes into the bathroom), take a shower with anti-bacterial soap, take three 10 minutes walks, and drink at least 4 large cups of water. This is all in addition to resting, eating, and well…just living. This protocol is designed to help his body heal and prevent as many side effects as possible.

Currently, Justin is in his most vulnerable state – with virtually no immune system he is susceptible to infections that could compromise his recovery. Due to the nature of this process we have been told to limit his visitors during this time, the fewer people coming in and out of his room, the better chance his body has to heal. 

Justin’s room is covered in the cards that everyone has sent, thank you so much for the thoughts, prayers, gifts, positive vibes, and well wishes. I am literally running out of space to hang up all of the sweet things that have come our way in the last two weeks. I am a firm believer that a positive attitude, a little humor, and comforts from home aid in the healing process.

I will update again next week as Justin continues to make progress and gets closer to his discharge from the hospital to continue his recovery at home. (Yay!)

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Eight Million Cells

 

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On Friday, February 3rd, 2017, around 12:15pm, eight million stem cells were pushed into Justin’s body to start building his new immune system.

It was amazing to witness just how informal the actual procedure is. A bag of stem cells, which resembles a bag of tomato soup, is hung from his IV pole, the tubing is connected to his port and then for about 20 minutes, we sit and wait for all of the cells to find their way into his body.

With his “transplant song” playing in the background, we chatted with his nurse, took pictures with his cells, and waited. It was, at the same time, an amazing and underwhelming moment. There was no grand ceremony, no wheeling off into a procedure room, just a couple of family members, his nurse, and the cells. Impressive, nonetheless.

In December, I wrote a public letter on my blog to his donor. I was overwhelmed with the selflessness that encourages someone to donate their own cells to a perfect stranger. I know very little about this person. I know that they are a domestic (live within the United States), male, and that on Thursday afternoon, they were in a procedure room donating cells for Justin. About 15 million cells to be exact. Those cells arrived at Detroit Metro Airport at 7:58PM on Thursday evening to make their way to Ann Arbor, eventually being transported directly to Justin’s BMT Unit room. Through my own creepy stalker-ish ways, I have narrowed down the city of origin to New York, Baltimore, or Peoria, Illinois. For at least the next year, we’ll have no idea.

For now, Justin is doing well. He is balancing in the couple of days post-treatment, and before his counts begin to drop dramatically. The fight is far from over, but we have gotten through what is expected to be the worst of it. Justin’s age, positive attitude, and humor are all on his side.

He has a fun couple of days planned, slumber parties with his sister, watching the Super Bowl with some friends, and lots of video games, snacks, and naps in between. I will be heading back into the office on Monday for the first time in almost two weeks, before heading back to my home away from home: The Michigan Medicine Bone Marrow Transplant Unit.

Everyone has been so supportive lately, and I couldn’t finish this post without expressing my gratitude for a few of our loved ones. Thank you to Justin’s sister Jaime, for coming, fresh off a plane from California to be a part of Justin’s transplant and staying with him overnight so I could go home for some sleep and a shower. Thank you to my parents for coming to the hospital to also be a part of Justin’s transplant, my dad especially who took two days off of work to be there. And to everyone else that has been a part of this process: Thank you!

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Day -3

It’s official – Justin has been admitted to the BMT Unit!

Transplant day is considered Day Zero in the BMT world. It’s the day when everything goes back to zero and we start counting up again. After admission day and two days of chemo, we are starting Day -3: the first day of radiation treatment. We’re not entirely sure what to expect, but we are extremely confident in this team and know they will keep us moving in the right direction.

For the first time in all of his treatment protocols, Justin had a port put in for all of this IV fluids, blood draws, and medications. Instead of having to be poked and prodded on a daily basis, he simply lifts his shirt and lets them connect the tubes. I say simply, however it’s anything but simple. Justin was in a lot of pain for the first 24 hours, and had some itchiness from the adhesive. The pain was to be expected, apparently it is one of the most common complaints among patients within the first few days. I suppose being “one of the crowd” is comforting.

The first day of chemotherapy hit Justin a little more than anticipated, but with the help of a quick nurse, some IV meds, and a nap he felt better after about an hour. I, hesitantly but at Justin’s urging, decided to head home for the night to catch a good night’s sleep, cuddle our puppy, and enjoy a shower. Day two of chemotherapy seemed to go much better than day one. No nausea or weak feeling that he was hit with the day before.

The unit itself is really quite remarkable, it’s a small city cut off from the rest of the hospital. It even has it’s own supply of air being pumped in to keep infections to a minimum. As expected Justin has made friends with his nurses, he has fun with them, jokes with them, and builds incredible relationships with them. He even met a nutritionist that enjoyed a 30 minute conversation about cheese with him.

day-3Just when we get used to the day to day flow of this temporary life, the schedule changes. Today brings a new part of the treatment process – something that Justin has never experienced. Twice a day for three days he will go through a radiation treatment, leading to   the inevitable Day Zero.

As you might expect, Justin is in good spirits and taking each day as it comes. Thank you for continually supporting both of us as he takes on this fight against his lymphoma.

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