1. What is an autologous bone marrow transplant? Read this short resource from the Leukemia & Lymphoma Society https://www.lls.org/treatment/types-of-treatment/stem-cell-transplantation/autologous-stem-cell-transplantation
  2. Day -8 (They use negative days here to describe the days before the actual transplant on Day 0)
    Static
    Moved in! My nurse today was Kelly, who was also my second nurse ever and an all time fav. All day I've been fighting an allergic reaction to a new med. My skin feels like it's on fire and the inside of my mouth feels like it's coated in slime. My nurse tonight is Caroline who I'd never met before, but she's cool. Room is good, got some decorations going. Got some good snacks, but eating sucks because slime. None of this is meaningful or interesting, but no one's making you read it either.
  3. Day -7
    Static
    Started the day with a procedure that put a PICC line in my arm where my chemo will go in. The line will stay in until I go home. I wanted anesthesia because it's fun, but they wouldn't give it to me so I just had to chill on the table while they noodled around in my arm. Not fun. Met with physical therapy today and got 5,000 steps walking from one end of the room to the other 500 times. I FaceTime'd Kyra which was so great. Nurses were Kelly and Caroline again. Arm hurts, but not a bad day.
  4. Day -6
    Static
    A day of firsts- first chemo, first cry, and first visitor. Today's chemo was a 3 hour infusion of Carmustine. I'm on lots of anti nausea drugs so I feel fine so far. My old patient navigator Allie, who was my hospital BFF but is now killin' the grad school game, came to hang out! I got an exercise bike from PT and spent 45 min on that. Mouth still slimy. Facetime'd some UMD pals before bed. My nurse today was Sophia, tonight it's Stephanie, never had either of them before, but they're great.
  5. Day -5
    Static
    I woke up today and felt super weak so I slept pretty much the whole day. Chemo today was Etoposide and Cytarabine. My nurse was Rosalyn, but didn't get to know her that well because slumped. Got 1,000 steps in but didn't do any other PT stuff. Nurse tonight is Stephanie again. Mouth situation: more dry, less slimy, but tongue is a nice shade of white Was gonna attach a pic, but literally too graphic. S'nasty. Finally got some energy and am working on a video project now but going to bed soon.
  6. Day -4
    Static
    Today's nurse was Rosalyn again, and Stephanie at night again. I only took one nap today so I got to know Rosalyn more and we're pals. Today's chemos were Etoposide and Cytarabine again. 3 days of chemo down, 3 to go! Mouth is so dry, but tongue is back to a more normal color. I got to see my brother for a little bit when my parents switched off. Also, my favorite doctor who left Children's earlier this year came to visit! Felt strong enough to go on the bike for a little which felt good.
  7. Day -3
    Static
    My nurse in the day was Jaclyn, who I'd never had before, Stephanie again at night. Made it through all of my physical therapy and edited some photos. Today's chemos were Etoposide and Cytarabine again. In other news, I'm constipated because a) can't have fresh fruit, b) not as active, c) s'many drugs. Debated putting that part in there, but you're getting the real deal. So if you're praying, pray for poop. I also have a rash but they think it's no big deal. Time for So You Think You Can Dance.
  8. Day -2
    Static
    I pooped! The power of prayer. Anyways. I love my room with big windows when it's sunny, but on days like today it's a real bummer. A woman from the palliative care team gave me acupressure- it uses the basics of acupuncture, but with pressure and some oils. Amazing. One of the PT's here is also a barre instructor, so she gave me some modified barre exercises. Felt like I was back at PBC! Then I took a nap. Nurses were Sara and Shari, & chemos were Etoposide and Cytarabine again. Rash persists.
  9. Day -1
    Static
    1 week down! 3 more to go? 4? 5? Chemo was Melphalan this morning, and I had to chew ice while it went in to help combat mouth sores. Rash still rockin' (above). PT came by and showed me some new exercises. My grandparents visited with my brother. Docs say my blood counts are starting to drop. Tried to nap but 1,000 people came in my room. Sucks because I can't leave but seems like the whole world can come in. Had my second real cry today and it lasted hours. Nurses were Sara and Shari again.
  10. Day 0- TRANSPLANT DAY!
    Static
    Nurses + art therapists sang to me and hung a cute sign up in my room. And then, at 12:19pm, my new bone marrow entered my body. The infusion lasted 45 min, then I took a 3 hour Benadryl nap. Read more about how transplant works at the top of this li.st. Woke up, chilled, got my bandaging changed on my PICC line, and had my weekly Facetime with Kyra. Nurses were Cheryl and Shari. Now just in a waiting game to see how my body figures everything out. AND MINDY KALING JUST TWEETED ME.
  11. Day +1
    Static
    Had acupressure this morning, which was amazing again. But then spent the rest of the day in bed nauseous, with the exception of 5 minutes on the exercise bike. This is the chemo starting to hit. Hopefully I can maintain an appetite so I don't have to get a feeding tube, but eating today was hard. Attaching another pic from yesterday. Nurses were Caroline in the day and Rosalyn at night, so good to have some familiar faces.
  12. Day +2
    Static
    No nausea today, but so much fatigue. Slept through the day, waking up only for meals. Very happy I could eat today. They say the hardest days are from +3ish to +10ish, so I'm glad I'm going into them strong. The doctors can see some early mucositis forming, but not too bad yet. Betsy was my nurse today, who I love and then I have Rosalyn again tonight, who's great. Nevermind, just got nauseous.
  13. Day +3
    Static
    Started the day with a makeshift smoothie and Facetime with the cousins. Then, I went back to sleep until 3. My throat is starting to hurt because of the mucositis, but I still ate a good amount today. Got on the exercise bike for 5 minutes and played some games with my parents. My counts are dropping fast. No hair has fallen out yet, but I wish it would because my legs have gotten grossly hairy. Starting to miss things like fast food and weather. Nurses were Betsy and Rosalyn.
  14. Day +4
    Static
    Another day filled with a lot of nothing, aside from a great Facetime with more cousins. My weight's dropping despite my efforts to continue eating and moving. It's so sad for me to lay in bed and know I am losing muscle I worked hard for. My throat is hurting a lot more, so if a feeding tube is to be placed, it will have to be soon, because even though I can eat now, by the time I no longer can, it will be too painful to place a tube. Decision for tomorrow. Nurses were Betsy, and now Becca.
  15. Day +5
    Static
    Real as it gets. I've been having diarrhea, which is normal at this point in the game, but the doctors are making me collect and save it for testing. Speaking of humiliating, I'm so weak that my mom had to help me shower and get dressed. Stayed in bed all day, but did some PT, had acupressure, and my aunt and cousin came. I'm starting morphine tonight for my throat pain. I don't think I'm getting a tube placed. I spiked a fever, so my port had to get accessed, which was a nightmare. Want Mom.
  16. Day +6
    Static
    Threw up getting out of the shower this morning. Slept the rest of the day. Since I haven't been able to eat much, I'm starting IV nutrition and going back on fluids. Still on fever antibiotics. Also, my hair is falling out.
  17. Day +7
    Static
    Didn't throw up in the shower, so better day already. Still having problems eating because of pain. Slept most of the day aside from talking with my psychologist, who's one of my favorite people in the world. Sad because I slept through my Facetime with Kyra time. My weight is going back up because of the IV nutrition, so that's good, and I started on GCFS which will help me grow some white blood cells, since I'm at 0 right now. Hair is one huge dread right now because so much is falling out.
  18. Day +8
    Static
    I think I've turned the corner. Feeling stronger today, instead of weaker. Didn't accomplish much, but I was grateful to not be feeling so weak. It was nurse Kelly's last day and I'm so glad I could say goodbye. She was my nurse the day I got diagnosed, as I explained in Day -8. Had horrible stomach pains in the morning, so a new medication is being added. I got to make up my weekly Kyra Facetime since I slept through it yesterday. Also had some awesome visitors. Oh, and I'm bald!
  19. Day +9
    Static
    Spoke too soon about turning the corner. Today was maybe the worst day yet. I had no appetite and stayed in bed all day. By the time night rolled around, I had spiked a fever and felt absolutely awful. My mom spoon fed me dinner and my mandatory daily shower was my mom and nurse wiping me down with washcloths. Humbling! I am so thankful for my mom, nurse Lauren, and nurse practitioner Chris for working so hard all night to help me feel a tiny bit better.
  20. Day +10
    Static
    I have to stop saying today was the worst day but I think I'm telling the truth this time. Threw up at 3:45am and 9:45am. Been riding a 104 fever all day and I feel so awful. Spent the entire day in bed in mild agony because these aren't quite TempurPedic mattresses. Started a few new meds to help with pain and got a patch behind my ear for nausea. I might have some white blood cells which is exciting. Just got put on oxygen. Getting transferred to the PICU because of course I am.
  21. Day +11
    Static
    Day 1 in the PICU. I have to wear this awful mask and am not allowed to drink anything because they hate me, and there's water in my lungs or something. We think I have engraftment syndrome, so I'm starting on steroids. Hopefully I get to go back upstairs tomorrow or my nice room might be reassigned. TMI of the day, since I have so little control of my digestive tract, I literally sharted this afternoon.
  22. Day +12
    Static
    Got off the big mask this morning and put onto a more regular oxygen tube; and am finally allowed to drink something. My breathing is way better but I still feel pretty weak. Port had to be re-accessed since it's been a week, but it went way smoother this time. I've slept pretty much the whole day, but I am so thankful for the oncology nurses who have come down to visit. Hopefully moving back upstairs tomorrow.
  23. Day +13
    Static
    Three weeks down! They're keeping me in the PICU another night, so that's extremely disappointing. Rash from engraftment syndrome. PT came by, but it's frustrating when PT/parents/nurses are pushing me so hard when really I want to just lay in bed. I'm on the lowest level of the oxygen mask, which is a good sign. Dad's here tonight, so my washcloth bath will just be me and the nurse. Facetime'd Kyra. Will not miss this room that never gets dark and how I can't use the real bathroom.
  24. Day +14
    Static
    In a surprising turn of 0 events, I'm still in the PICU. Very tired of the shots and finger pricks here, and the constant tracking of my vitals. The only food I can make myself eat is popsicles, but the fact that I've only been eating sugar makes me feel weak and horrible in my stomach. PT came down to give me an awesome Mindy Kaling poster they made.
  25. Day +15
    Static
    Current ailments: burst blood vessel in eye, multiple finger wounds from needle sticks, diarrhea, bloody nose, an abundance of rashes, mucositis, no appetite, extreme fatigue, liquid in my lungs, and a burning desire to leave the PICU. I can leave when they have a bed upstairs for me again, but since I lost my spot getting moved down here, I go to the back of the line. The sheets here smell.
  26. Day +16
    Static
    I'm smiling under my mask because I just got moved back into my room upstairs! Felt weak today, but had a visit from my aunt and uncle while my parents watched my brother perform. Already I am feeling stronger and more optimistic being in my normal room with my normal things. The challenges continue to be eating and drinking, two things I have done little of. It's very hard with the mucositits, and it's stressing my mom out.
  27. Day +17
    Static
    It feels good to be back in my own room, but that's about all that feels good. The first half of the day, I just wanted to sleep and felt horrible turning away art therapists and fun nurses coming to hang out. I'm still not really eating or drinking. But the major news of the day is that my package from @mindy came!! I tweeted her on transplant day because I have her pic hanging above my bed, so she sent me a care package! I am so lucky.
  28. Day +18
    Static
    Getting very tired of shots every 4 hours. Other than that, not a horrible day. I slept for a while and had physical therapy for the first time in a week, which felt good. The overachiever in me is starting to get restless that I haven't completed some major project so far, but I barely have the energy to binge watch anything. Still not eating because mucositis sucks. One of my PICU nurses came up to visit, which was so nice. Saw one of my favorite doctors too.
  29. Day +19
    Static
    Had a meeting this morning and they say I can go home in about a week. There are a bunch of rules for the next month, and a long road to recovery. Occupational therapy came to discuss how I can get around at home. I also had PT, which reminded me how weak I truly am now, and the hard work it will take to get me back. I ate a little more today- I am desperate to get off IV nutrition before I go home so my PICC line can be removed. Sad because I had Ed Sheeran tickets for tonight.
  30. Day +20
    Static
    Not a bad day. I've been in significant pain since I woke up because of the way I slept, but overall I feel stronger. Physical therapy was very hard. I ate pretty well. I also felt well enough to edit some pictures and Facetime Melanie. Today marked four weeks here. That makes me a little sad because I did expect to be more productive. Hopefully that part comes when I get home.
  31. Day +21
    Static
    My dad let occupational therapy in at 10am, which is earlier than I wanted my day to start, but it happened. I've been experiencing a significant amount of pain around my chest and neck for some reason but the doctors aren't too worried. The nutritionist is decreasing my IV nutrition since I've been eating. Encouraging. Days feel long since I am awake for most of them. One of my favorite nurses, Steve, just came to visit after working a 16 hour shift (and he's here tomorrow). Nurses are amazing.
  32. Day +22
    Static
    Left the room! It was for a chest x-ray to try and figure out why I'm having this pain, which today has moved to my whole torso. The x-ray looked good, so we think it's a nerve thing. "We" meaning a team of people much smarter than me. I continue to eat, despite having little appetite. I am determined to get my PICC line out before I go home. That being said, to do so, they are now looking at Tuesday/Wednesday to go home, instead of Monday. I was sad about that but Mindy Kaling just tweeted me.
  33. Day +23
    Static
    Today marks 1 month since I moved in. I had a busy day starting with a visit from my aunt and cousin, then from my uncle, Facetime with Kyra, and dinner with my family for the first time since I got here. I'm feeling pretty good today, although I didn't get in as much physical therapy as I would have liked. They say tonight will be the last night of IV nutrition. Hopefully my counts stay up without it, because that will help get me home Tuesday, our new target. I am ready to leave.
  34. Day +24
    Static
    Another good ("good" is relative here) day. Although I spent most of the day in bed on my laptop, I met my nutrition and hydration needs so for the first night ever, I'm not hooked up to anything tonight! It feels very strange. Tomorrow, all the doctors and specialists come back, so hopefully they still agree I can go home Tuesday.
  35. Day +25
    Static
    I was allowed to leave the room today! I did my physical therapy in the hallway with my mask, which I will have to wear any time I leave the house once I'm back at home (although the only place I really have permission to go is here). Speaking of home, it looks like I really will get to go home tomorrow. I am a little overwhelmed at the road ahead but glad to get this behind me. All the rules remain, but I will be so much more comfortable in my own home, and with my PICC line out.
  36. Day +26
    Static
    5 weeks later, I'm going home. It will be a long time before normal life, but I am grateful to have this part behind me. To the staff at Children's National, I owe you my life one thousand times over. If any of this has moved you, please support organizations like the American Cancer Society, St. Baldricks, the Ulman Cancer Fund, or the Leukemia & Lymphoma Society. I couldn't have done this without the support of so many, and I am endlessly grateful. God is so good. Thank you.