New Hospital Adventures

Today I went to the hospital- an event that I have become very accustomed to. I did the usual bloodwork and talking to the np (that's hospital lingo for nurse practitioner).

Side note- other fun hospital lingo: 

• cbc: complete blood count
• pdh: pediatric day hospital
• msk: memorial sloan kettering
• port: metaport (my central line)
• access your port: stick a needle in your port
• de-access your port: take a needle out of your port

there's probably more I just can't remember...

After my normal routine was done and I found out that I didn't need any transfusions but that my counts are still low and I'm still neutropenic (booo), dad and I had lunch. 

My new hospital adventure started when I went from the 9th floor (where the pdh is located) to the first floor to visit physical therapy and occupational therapy (which are conveniently located in the same place). The doctors recommended that I do both in order to build up my strength. The occupational therapist (named Laura) explained that her job was to make sure that I can do all of the daily things that I'm accustomed to doing without the side effects of my treatment and fatigue getting in the way. For example, I get tired very easily doing everyday tasks like showering, getting dressed, and making myself food. Laura's job is to make me stronger so that I can do those things like I used to be able to do them--- without getting tired. She gave me some simple arm, hand and back exercises to do at home and hopefully I'll be a little bit stronger every time I stronger every time I see her which, for now, is every other week. Physical therapy was pretty much the same thing, but for my leg strength and endurance. As I mentioned before, I get tired doing everything, so pt should build up my endurance. I also get leg pain, specifically in my knees a lot- I think from just walking around, so pt should also work towards making my legs stronger. I'm not sure what specific exercises they're gonna have me do yet. Today they just did some baseline tests on my strength and endurance. I'll go in for pt every week.

Overall, it was kinda fun and I'm excited to work to get my strength back. It's annoying being tired all the time and not being as strong as I used to be.

OK, so that was my adventure. Please comment and ask questions and tell me what to write about because I'm running out of material!!! :D

Thanks for reading!

Love,

Ella <3

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ELLA TOTALLY WROTE THIS

My best friends EVER

Hey guys! I really love my friends, but especially Stefanie, Claire, and Skylar (in no particular order). Seriously though, they are the best....EVER. Stefanie made us some DELICIOUS brownies, even though she doesn't know what a tablespoon is. JK but not really. Skylar will be on Broadway one day....watch out for her. Claire is the master at Brown who is smarter than everybody here. When did she get so smart? Anyway, they LOVE me, Ella, who wrote this blog post, SOO much so they came to visit me today and it was the best day EVER! Shout out to all my Kinder Ring homies (I wrote this...I promise. It's me, Ella)! 12533 in da house!

Update!!

Sorry its been so long since I've updated I just haven't really felt like it...


Monday I started my new treatment cycle called consolidation one. It's the first step in making sure that they get rid of the .01% of leukemia cells that they didn't get in the first stage of treatment (called induction). That does mean that induction successfully got rid of 99.9% of my leukemia cells which technically means I'm in remission! That sounds more exciting than it actually is. It's exactly what was supposed to happen after induction. Now the hard part is getting rid of the rest of the leukemia and making sure it doesn't come back. That's what's gonna take the longest amount of time and that's what I'll be working on for the next year. But remission is certainly good news and it means I'm on the right track!


Now back to Monday:
-I had my old central line removed and new one put it. The new one doesn't have chords hanging off of it like the old one did which makes it much easier to shower. The new one lays under my skin and once it completely heals, you won't even be able to tell it's there. The only bad part about it is that whenever the need to access it, they have to stick me with a needle, but they did give me a numbing cream that I can put on before I go in for treatment which should make it better.
-After the surgery, I got a new chemo called cytarabine which needed an hour of fluids via IV before hand. The drugs ran for 3 hours and then I also needed another hour of fluids via IV afterwards.
-I also got a blood transfusion because my hemoglobin numbers were down. That also ran for about an hour but they were able to do it while I was getting the chemo.
-Needless to say, Monday was a long day. I got to the hospital around 7:30 AM for the hour-long surgery which didn't actually start until around 12:00 PM and we left the hospital around 8:00 PM. Most of the time was spent waiting for things to actually happen.


Tuesday:
-I got to the hospital around 10:30 AM and was immediately sent to the bed area where they give treatments. I was very surprised that they didn't make me wait to get bloods drawn or anything (which they usually do). I was happy to get the day started as quickly as possible.
-The very nice nurse Chris started me on IV fluids which I needed an hour of before getting another new chemo called methotrexate which ran for 4 hours.
-Chris also gave me a chemo called pegaspargase which was two shots: one in each leg. They hurt a lot for like 2 minutes but then I was fine. I also needed to observed for 5 hours after the peg shots to make sure I didn't have a reaction to them. I didn't... 
-The peg shots and the methotrexate started around the same time so I ended up leaving the hospital around 4:00 PM. Not too bad...


Wednesday:
-Got to the hospital around 10:00 AM and was again told to go straight to the bed area. yay
-I got Chris again as my nurse (apparently I'm her favorite patient and she requested me :))
-I got the same cytarabine as I did on monday along with the hour of IV fluids before and after.
-The also gave me another chemo called vincristine which is just a 15 second push that I've gotten before.
-Everything didn't really start until 11:00ish so we left the hospital around 4:30 PM. Again, not bad.


As you can see, I've gotten a lot of chemo in the last few days. I feel pretty tired but I'm still not neutropenic and the good news is, I don't have to go back to the hospital until Monday and that's just for blood work. More good news is that my last chemo for the month is next Thursday and its just a quick push of vincristine :) They do say I'll probably have to come in for transfusions and spinal taps and whatnot but we'll play that by year. After this month consolidation 2 starts which I'm assuming will be a repeat of consolidation 1. I also started steroids again after a quick 4-day hiatus. The steroids are actually another form of chemo and I'm on a much higher dose this time so prepare for crazy eating and crazy emotions. woohooo :)


I know this update was very medically-focused so feel free to comment if you have any questions! Also let me know what you want me to write about on my next post! That's all for now. I have some legitimate homework due Monday so that's what I'll be doing this weekend. Happy New Year (for my Jewish readers)! That's all for now!


Love,
Ella

Birthday :)

Today (well its after midnight now so I guess yesterday) was my birthday. It was a really nice day that consisted of Skypeing with my psych class, eating Chipotle at the movies with mom (we saw Moneyball, in case you were wondering. It was pretty good), napping, getting ready for family dinner, and eating at a delicious restaurant :) I really couldn't have asked for more- it was kinda perfect.
I must admit it was weird not being in school and seeing my friends on my birthday for the first time since I can remember. I got many lovely texts and calls and wall posts though, wishing me a happy birthday (thanks everyone!) Psych class also sang to me (and Noah) via Skype :)
As far as other birthday plans go, I'm having dinner with my friends tomorrow night which I'm super excited about and then on Sunday, we're going to the Mets-Phillies game (GO PHILLIES!!!! I'm a little obsessed with them) which I'm also super excited about. Let's just hope this little slump they're going through doesn't extend through the weekend (sorry if you don't like baseball and have no idea what I'm talking about).
My room was also just finished being painted (yay!) It's a really pretty blueish color that goes great with my new silver-gray sheets. Now all I need is my Aunt Jane to help me with some fun decorations and new furniture and I'm all set! woohooo :)
I'm kinda trying to cram my weekend with lots of fun things because on Monday I'll be starting a new treatment cycle which means my counts will go down again and I won't feel as good as I do now. All I can say is that I'm really glad that my counts came up when they did!

I know it's been a little while since I've posted so I just wanted to give this quick little update. I do have a lot more treatment information and updates on how everything's going but I don't feel like writing it all down now so I'll try to post again tomorrow. I'm also being interviewed tomorrow by my mom's friend who is writing an article about childhood Leukemia. I don't really know what to expect but I'll let you guys know how it goes. Thanks again for the birthday wishes and the support and for reading!

Love always,
Ella <3

Amazing News!!!! :D

MY COUNTS ARE UP!!! yayyyyyy :D That means I am no longer neutropenic! I get to eat in restaurants and see people and not feel like I'm quarantined in my house! I had the most amazing Japanese food, in a restaurant, with people around, tonight for dinner, and it was HEAVENLY! :) The doctor said my counts should stay high for about a week (yay freedom!!) which is perfect timing because my birthday is on Friday and I'll get to do whatever I want!! I could not be happier! wooohoooooo :D

Today the doctors talked a lot about the next stages of my treatment because this is the end of stage one but I forget the specifics of what happens next so I'll post them later. I got like a 10 month timeline of all my treatments so I'm super set. I do know that tomorrow I have to go in for a surgical consult to talk about getting a more permanent line in my chest for treatments. I'm actually kinda happy about that though because this central line thing that I have now is starting to annoy me. I have three little tubes hanging out of my chest that get in the way of everything and the new line is supposed to go under my skin and not bother me nearly as much. The only down side of it is that it's a more invasive procedure to get it inside of me but oh well. The actual surgery is set for about a week from now assuming all goes well.
Today they also gave me another plasma transfusion to help my blood clot which I can't really tell you anything about because they completely knocked me out with Benadryl (to prevent any bad reactions). Apparently they hooked me up for about an hour and then I went home and slept for another three hours. I was out the entire time, but hey, no complaints, I do love sleeping :)

In other news, spa day was kind of a failure. I was hoping to just get a manicure at the salon (seeing as I don't have any hair) but when we got there, we were told that the manicurist was not there. I proceeded to lounge around while my sister and mom got blowouts (I was happy to wait because seeing them getting pampered made me happy). They then brought in a makeshift manicurist who did my nails and then proceeded to tell me that she usually wears glasses :) (needless to say, it wasn't the best manicure). Overall though, the people who organized the event (Chai Lifeline) were very nice and the gesture was very much appreciated.
In the end, (because I think my mom felt bad) we ended up going shoe shopping which honestly was sooo much better than spa day :D Let me just say that I love new shoes. I only got three pairs *;)*

I also wanted to mention that Chai Lifeline is a great organization that helps families with children with severe illnesses. They have volunteers come to the hospital and hand out snacks and food to the kids and they organize fun events for parents and siblings of patients. They also help with schooling and insurance and whatever else people need. I honestly don't think I've ever appreciated the work that charity organizations do as much as I do now and not at all in a selfish way. I'm not saying that because they benefit me specifically, I'm saying that because it genuinely warms my heart to see how much people care and that other people are getting as much love and support as I am. I think going through this has made me see just how much the support truly means.
There's also this fun organization called Look Good Feel better that gives chemo patients free makeup and free makeup lessons that "teach beauty techniques to female cancer patients to help them combat the appearance-related side affects of cancer treatment."(from to their website). I think it's a really fun little self-esteem booster. I'm totally doing a workshop especially because 1) I had to throw away all of my makeup because of the bacteria living in it and 2) I think playing around with my makeup will be especially fun now that I don't have hair :). That's on Wednesday so I'll let you know how it goes :D

Tomorrow after the hospital I'm gonna go the paint store and start looking at paint swatches for my room. It's getting a makeover for my birthday :D

If you got all the way to the end, thanks for reading! Sorry for rambling! I hope it was at least somewhat entertaining :)
Love,
Ella <3

Woohoo Questions!!

Thanks so much to anonymous for all of these questions. I will try to answer them to the best of my ability!

Do you feel physically sick other than being tired? Or is it all an internal thing? 
Sometimes I feel physically sick but that's rare and sleeping almost always makes that go away. The tired thing is the worst part.

How did your siblings and friends react when they heard?

My siblings and friends were obviously shocked and upset when I told them. I can't speak for them but I know they must have wanted to immediately help in whatever way they could. I also think they worry about me especially because I'm not the best at talking about my emotions.

Did you do any sports previously and are you not allowed to do them anymore?

I was never an athlete so thats not really an issue :) but the doctors do encourage me to get a reasonable amount of activity every day, even if that just means taking a walk around the block. It's also really whatever I feel I can handle that day.

Are your siblings' lives any different now, and how?

Again, I don't want to speak for Noah and Maia, but I would say that their lives are different now than they used to be. I think they're both put under the pressure of assuring friends at school that I'm okay and I think they're both now trying to help me stay strong and get my message out to school. They're also both definitely trying to be proactive and raise awareness about Leukemia. I also think they worry about me a lot more than they used to which is a big burden and I wish they wouldn't.

When you basically stay home all day, are you bored? Does someone stay home with you (parents missing work?) or are you by yourself?

I get bored at home sometimes. Netflix and TV and sleeping help a lot. I also have college apps and schoolwork to stress me out if I'm ever bored :) My mom stays home with me (she has a bunch of unused vacation days that she's using until she figures out how she can come up with some more permanent time off). My dad's work schedule is pretty flexible, so he tries to plan his hours around our scheduled hospital visits and he stays home if he can. 

Is the no-bacteria thing because your cancer is weakening your immune system, or is it the treatment that makes you more sensitive?

The no-bacteria thing is a mixture of the cancer and the chemo weakening my immune system. 

Do you and Maia still share a room?

Haha, Maia and I do not still share a room and haven't for about two years :) 

Had you already started school when you found out you had cancer, or when you had to start missing school?

I found out I had cancer about a week before school started so I never actually went to an class but as I said before I take some classes from home. 

I really appreciate your interest and your willingness to ask questions. I think I'll usually feel comfortable answering pretty much anything so feel free to ask away! Let me know if I was unclear or missed anything! Thanks again and again for the support :)

<3 Ella

Random

Today was a good day. I just kinda lounged around. My grandma came for a visit, which was nice (I helped her set up her Light the Night page and sent emails to her friends for contributions which you all should go do to!!!!!) Then I got to get out of the house to go for a drive up to school to pick up my brother and sister. (I got to drive :p) My road test in order for me to get my license is on Monday and I need all of the practice I can get! My mom's friend was also kind enough to send us dinner from her restaurant which was delicious (thanks Wendy!)


Random thoughts: It still kinda surprises me how nice people are once they learn you have cancer. I know it sounds a little cynical, but I've found that people are so willing to do really anything I ask of them :) It's not like I try to take advantage of it or anything though. I just think it's kinda funny. I honestly honestly honestly am extremely appreciative and I know people just want to do whatever they can to help.

None the less, here are some examples of what I call 'perks of cancer'

• People bring you candy
• People bring you magazines/books/entertainment/other presents
• People (mostly mom) prepares and brings food to me (sometimes even in bed)
• People don't call you lazy for staying in bed and watching movies all day
• People are much more understanding when you tell them that you're too tired to do something
• Volunteers at the hospital walk around all day with free food and sometimes tickets to free events (They're sending me, my mom and my sister on a spa day on Sunday :)
• People always ask how you are and seem to genuinely care
• People are just SUPER NICE

Now I'm really not complaining about any of this and I am nothing but grateful to everyone who has tried to make this easier for me. I'd just like to point out that it would be so cool if everyone treated everyone else the way that people have been treating me. Think about a world where everyone walked around treating others with the kindness that they would treat a cancer patient. Hahaha people should do that! :) ok, ok, I know it's slightly idealistic but I just think it would be cool :)


Ok, now some examples of why cancer sucks (haha you knew they had to be coming)

• There a million things I'm not allowed to eat including; fresh fruits and veggies, sushi, even just slightly undercooked meat, anything that's been sitting out for too long (especially dairy products), leftovers that have been in the fridge for more than 24 hours
• I'm also not allowed to eat restaurant food unless I see my food go from being made, to the oven, to the plate (aka I need to know that it was freshly made (not sitting around waiting to be re-heated) and that no bacteria touched it). 
• I can't have deli meats or baked goods from bakeries because I don't know how long they've been sitting out.
• I pretty much also avoid restaurants because I'm not allowed to be around that many people and because the bacteria risk is too great when I don't know where my food is coming from
• We already know I can't go to school because of all the bacteria risk but I also can't go to the movies or really any crowded, confined places in general. (Technically, I'm not really supposed to be in a room with more than 3 or 4 people at a time)
• Note: these are all things that I'm not allowed to do when I'm what's called neutropenic which means my white blood cells are down and my body isn't strong enough to fight off normal, every day infections. You guessed it! I am neutropenic and the doctors say I should stay that way for a good month or two. It's been about 2 and a half weeks, so I've got a little ways to go.

Anywho, tomorrow should be a pretty chill day as well. Two of my friends are coming to mi casa later on in the day to make (and eat) dinner with me seeing as I obviously can't go out :). I'm super duper excited because if there's nothing these steroids make me love more than food it's human interaction :D hahaha!! 

Please leave comments and ask more questions so I can blog about more things!

Love always, 

Ella <3