38 Days in the Hospital

After five weeks and two days, I am finally home!

This hospital stay was much longer then we expected, but it thankfully wasn't too bad. Compared to our many previous extended stays, this was a relatively calm one. The last week or so really tested my nerves because I've seriously felt fine, it was just my ANC keeping me inpatient. My ANC has still not fully recovered. Thursday it was only 50 and they originally wanted to send me home with it at 200. I was really surprised when the doctor came in and said we could go home. I was a little unsure at first because the whole stay we were told my ANC needed to be higher but I came home on antibiotics and with the rest of my blood work showing encouraging upward trends. So hopefully that ANC is going up too!

The stay started out with a rough first day. On Tuesday, December 18 I was scheduled to have my port (central line where I receive IV fluids, chemo, antibiotics, etc.) placed at 11 AM and to be admitted to the hospital following that. I first had to go to the oncology outpatient clinic there so that I could have my blood work checked and see if I needed more platelets before the surgery. To make a long story short, we waited for way longer than we should have at the clinic, getting the platelets took forever, they didn't give me enough platelets so I had to wait then receive another bag, I was unreasonably given IV Benadryl (which I hate because it completely knocks me out) before receiving the second bag (I get pre-medicated with Tylenol and Benadryl before receiving platelets and blood so I don't have a reaction), then I finally went back for my port at 4 PM. The whole day was ridiculous and should have gone a lot smoother. My mom and I prefer going to our outpatient clinic at Voorhees SO much more! Anyway, after that terribly long day, I was admitted and things were mostly fine after that. (I do want to say that that was just one bad day from an outpatient experience. CHOP is a wonderful place to be treated and they have top notch doctors and nurses!)

I started chemotherapy on Wednesday night. The chemos that I got during this visit were Mitoxantrone, Vincristine, and Dexamethasone (which is a type of steroid). The first chemo is known for nausea and hair loss so for a few weeks around the clock I received an anti-nausea medicine called Zofran. It worked because I wasn't nauseous at all throughout the whole stay. Love that stuff! I was also highly amused that the chemo was blue 😂 Vincristine makes my fingertips and toes all tingly. It's a weird sensation. Dexamethasone's side effects I talk about later in this post.

My blue chemo

Because I was going to lose my hair eventually anyway and it's a pain to keep up with long hair in the hospital, on Thursday night I had our friend Michaelann come and cut it all off. She shaved my head the first time I got sick in 2009 and the second time in 2015, so we asked her back this time too. So grateful to her for doing that!

That week I just watched a lot of Christmas movies to pass the time. It seemed like The Santa Claus and The Santa Claus 3 were always playing on Freeform so I probably watched them both at least five times that week. On Saturday, Melony and Mia came up with the rest of the family and we exchanged presents. It was a lovely afternoon.

Decorated for Christmas! We also had a little tree but I didn't take a picture of that :/

Christmas Eve was very chill. The family came and we played a board game and watched a Christmas special. Christmas Day we did the best we could to celebrate even though we were in the hospital. It was also a bit of a rough day for me because I had finished my first round of Dexamethasone and I go through about two-three days of withdrawal when I come off it. The withdrawal makes me irritable, tired, and every muscle in my body hurts. Not fun. So I was feeling that way Christmas morning but I took some Tylenol for the pain and did my best to stay awake for the opening of presents. My parents surprised me big time by having my car shipped home from Utah! I was so confused when I opened a present with my car keys in it and they had to show me a picture of the car in the driveway for me to understand what they had done (remember I was very tired). After opening presents everyone took naps and just hung out. We ordered pizza from Dominos (yes, we were those people) and it took over two hours to get here! So annoying! Word to the wise- don't order pizza on Christmas!

The day after Christmas was, other than the first day, the worst day out of my hospital stay. I had to get a spinal tap. I've done probably over a hundred of those throughout my time as a cancer patient but a lot of different things factored into this one being upsetting. I normally get them done at my outpatient clinic in Voorhees and they take such good care of me. For this one I had people handling me who weren't used to what I liked and I was still post steroids so I was already uncomfortable and moody and it was just bleh. The rest of the day I felt pretty terrible and my mom and I just laid in my hospital bed together and watched movies.

The next holiday was New Year's Eve and it was actually a great day! I sent my mom home so she could be with my dad and Mallory, Marti, and Amber came up. Amber planned some Minute-to-Win-it games for us to play so we did that and we had a lot of fun! Then we had our junk food dinner of pigs in a blanket, buffalo chicken dip, chips and onion dip, and chips and guacamole. And I had a root beer float. Yum. After eating we watched Dumplin' which is a movie on Netflix. It was really cute! After that movie we watched New Year's Eve (the movie) and then counted down to midnight and had some sparkling cider.

Marti, Mal, Amber, me

The next few weeks passed without being too eventful. I continued to get chemo and feel pretty ok!

Mom hiding from the camera under blanket hahaha

I had wanted to be home for my birthday, but that didn't happen so I spent it in my bed at CHOP. I didn't do much during the day but a bunch of the staff came in and wished me a happy birthday and even the cleaning lady sang me happy birthday! That was cute. The fam came up later on and brought me Saladworks and CHOP provided an ice cream cake which was so good!

Candid shot of us being weirdos 🤷

Couldn't really get Mal anything so I made her a poster :)

Child life provided the banner and a poster. Nice of them!

A really amazing foundation called "The M.I.P. (Most Important Person) Foundation" gave me a really great gift bag of stuff to use in the hospital and then surprised me with even more awesome things for my birthday! I might do a post about what I got because it was really great and they are a group that I largely support because of what they are doing for teens and young adults.

The week after that was again, very chill and just waiting for my counts to rise. Then we were finally released on Thursday!

What my room decor looked like at the end of the stay

Keeping my calorie intake up the right way 😉

We kept a sheet of my blood counts every day I was in the hospital. As you can see on the right side I had to get quite a few blood and platelet transfusions.

The biggest relief for me this stay has been that I haven't lost my appetite. In the past it has been really hard to eat while in the hospital and so I've had to get feeding tubes placed. I'm honestly pretty proud of myself for pushing through and eating like I have been. I know it sounds like such a simple thing, but when I'm sick or stressed, it can be very hard to want to eat (not to mention the chemo making me nauseous and my taste buds become dull so food tastes different or doesn't taste like anything at all). But that hasn't happened so far this time and I'm so relieved about it! Another huge relief was that I only had one fever and it only lasted one night without getting too high. They put me on antibiotics since that fever and I think that might have been what kept me from getting another one.

I surprised myself by finding ways to keep myself entertained for five weeks in one room. I read, watched TV/movies, listened to music, listened to podcasts, played games, and did arts and crafts. I read a book called Circe. It's a fantasy and involves greek mythology, which is not what I would normally read but it was Goodreads 2018 book of the year so I thought, why not? I searched Netflix, Hulu, and Amazon Prime for shows/movies to watch and added them to my watch list. My mom and I rewatched the first two seasons of Downton Abbey and I finished season six of One Tree Hill (not sure if I should continue with the next couple of seasons because six ended so good! If you've watched the show, let me know!). If you have any book, movie, or TV show recommendations I would love to hear them! That's what I'm going to be doing for the better part of this year so I'd appreciate any recommendations!

I also was very fortunate to have my family or at least one member of my family visit almost every day my mom and I were there. It really made the day better and it was something to look forward to every night. I also was super grateful for the visits I got from my friends Amber, Libby, and Emily. Unfortunately I wasn't allowed more visitors than that because it's flu season and the hospital has a rule about it.

Some really great news that we got while I was there is that they found four perfect matches for my bone marrow transplant! I honestly don't know a lot about bone marrow transplant yet, but finding four people who are perfect matches for me is a really really good thing. I've had a few people offer to be tested to see if they are a match for me (which is so incredibly kind and generous!) but if you're not a member of the patient's immediate family, then the donor has to come from who is already in the system. If you are interested in becoming a donor and helping someone like me, you can find more information at bethematch.org.

The next step is getting another bone marrow biopsy next week to see if there are any leukemia cells in my bone marrow (which we really hope there's not!) and the doctors forming a plan of what my next treatment will be before going in for a bone marrow transplant.

Thank you for the continued thoughts and prayers! Even though I am home now, this is far from over and we appreciate all the love and support.

Blood counts as of 1/24/19-
Platelets: 29
Hemoglobin: 10.1
ANC: 50