Happy Summer

Dear Family, Friends and Colleagues,

Although we are long overdue for a posting, let's agree it's been worth the wait – as we only have good news to report!

Ella’s treatment continues and her doctors and nurses are happy with her progress.  In early March, she began attending a few classes back at school for the final trimester of her senior year.  Spring arrived, and with it, the dark clouds of winter started to dissipate.  In addition to returning to school (and almost more importantly), Ella was able to regain some semblance of her normal life, being with friends and just hanging out.   Classes ended in mid-May, and since then it’s been non-stop senior class celebrations.  

Six months ago, it was so hard for any of us to imagine Ella attending her senior prom – but on June 8^th, she did just that - and she looked stunningly beautiful!   Graduation on June 13^th was a truly wonderful day for all of us - Ella and Noah received their diplomas with the usual pomp and circumstance, and our hearts were filled with emotion and pride. It was a great day we were happy to share with our moms and Amy’s sisters.

Noah and Maia continue to be really great – with equal parts love and care and typical sibling squabbling.  Maia is taking a physics class in June/July and then is off on a 10-day adventure in Costa Rica before entering junior year in high school this fall.  Noah is working as a camp counselor this summer and is looking forward to beginning his next four years at Johns Hopkins in Aug.   Ella is working part time a few hours a week, while still undergoing treatment 5-7 times per month.   

She’ll complete year 1 of intensive treatment in Sept/Oct and will progress to maintenance treatment for another year.  Ella is counting the days between now and the end of Aug when she joins the class of 2016 at Barnard College. 

We hope you will enjoy the pictures and share in our happiness.  We are so tremendously proud of them all!  Happy, and proud, and looking towards the future.

Till the next update, we send our love and gratitude.

Amy and Dave

Here's to a New Year!

Hi everyone,

Ella has taken a break from writing in her blog, but she has given us permission to compose this quick update to keep all of you apprised of her status.

At the outset, you should know that Ella is doing well. She is responding to her ongoing treatment and hitting the appropriate milestones her doctors need to see. Her day-to-day condition is very tied into the combination of medicines she takes. She pushes through her toughest times and truly shines when she is feeling her best. 

While Ella is not going to school, she is taking four classes via Skype (AP Stat, AP Pysch, and two English classes: Emily Dickenson and the Bible), and is working with her teachers and classmates to participate in and complete various assignments.  Last Friday, Ella visited school, attended some classes, and presented a Stat project with her friends Olivia and Elliott in Mrs. Itani’s class. That was certainly a good day.

There have been a number of good days over the last few months – and many are triggered by friends and family being close by. We are so grateful for all the support and prayers from all you. It means so much to all of us.

Blog posting can be a challenge, but we will try and keep you in the loop as we continue on our journey to recovery.  For now, enjoy the rest of the season – stay warm – and be well.

All our best,

Ella, Maia, Noah, Amy & Dave

Making Plans

I've been trying to think of things to do to keep myself occupied. I always look forward to weekends because my friends and siblings don't have school and my parents don't have work. I get really excited during the week just thinking about my weekend plans even if they aren't anything special. For example, this weekend I'm going to my brother's football game at school and then I have plans with friends Saturday night. Before I got sick, these would be very normal only slightly exciting weekend plans but now I find that every little thing I do that involves other people gets me really excited- and not because I'm healthy enough to do them but just because I'm so bored that everything seems exciting.

I've also been looking for things to do during the week that don't involve other people but keep me entertained and busy. I'm really interested in taking a cooking class because I think it would be a lot of fun. It's just kinda hard to find one that will take up enough of my time (not just one class) and that hasn't started already... My aunt also owns a radiology practice in the city and she's trying to get me a part-time job two or three times a week there taking calls and notes and whatever else she needs. I'm not sure if that's gonna work out but I hope it does because it'll definitely give me something to do and I'll get paid :). It's funny how small things like these excite me so much more than they used to. I also wish that my friends didn't have school so we could hang out all day. I'm also kinda getting sick of watching movies and tv and reading books all day...
My other weekend plans include dinner with my brother, a Jets game, and a college interview (which I'm really scared for meh).

Hope you enjoyed my little update. Feel free to share any of your weekend plans or any suggestions for me (thanks to people who already have!)

<3Ella

Hey

Sorry it's been so long since my last blog post. I've been super busy with college stuff, hospital visits, and schoolwork. I've also been too lazy to write...

I don't know if everyone saw, but my mom's friend wrote an article about me in the Jewish Week which was really nice. You can read it here if you want: http://www.thejewishweek.com/special_sections/healthcare/its_surprisingly_liberating_not_have_hair

In other news, I applied to college (YAY), I started visiting the hospital only once a week, and I've been feeling pretty good. The doctors were definitely right when they said that the first two months would be the hardest because I feel much better now than I did then. It's kinda weird because aside from being more tired and the occasional nausea, I don't really feel that sick. I'm happy about that but it makes me want to be able to do normal things like go to school even more and since I can't, I get upset.
Not much else has been going on- I've actually been pretty bored lately. Anyone have any good book or movie recs?

I'm excited that thanksgiving is almost here. It's one of my favorite holidays because of all of the delicious food :).

Thanks for all of the continued support. I'll try not to wait so long this time between posts. :)
Love always,
Ella <3

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

P.S. don't mind the link below, but if you want an email every time I update this blog, you should click on the little icon on the upper right-hand corner that says "follow this blog"!

<a href="http://www.bloglovin.com/blog/3092212/ellameryland?claim=wc454nppmgn">Follow my blog with Bloglovin</a>

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