Hello, It's Me...for the first time this year

I write this from a warm home;  cheery lights brighten the kitchen that I'm sitting in.  My family is in the next room, with their small group Bible study- I just finished one homework, and needed to write my thoughts before I begin more homework.
Today has been a long day.  It's not quite over yet.  This week has been long, and it's only Wednesday! This month has been long...I'm really tired.
I haven't posted in a while.  Life has been very busy.  I'm all caught up in college-so excited about that!! But it is not easy.  I'm taking a whopping seventeen credit hours-my most to date.  Classes are very hard, and quite time consuming.  I don't seem to have a free moment to myself, and by Thursday my energy for the week is spent.  But I couldn't be happier.  I'm back with my year-and my wonderful friends (Sara, Jeff, Josh, Kyle and Ean).  I've made a new set of friends, that I think I'm going to keep :) (this means you - Joan, AJ, Ben, Matt, Ryan and Paul) among others.  The amount of homework is incredible, but when I'm sitting in the Mechanical Engineering lab, flanked by the guys I'm proud to call my friends, I couldn't wish for anything more.  So many times in the last few weeks I've stopped, mid-seemingly-impossible-problem, and thanked God for allowing me another chance at life, and for giving me the strength and ability to catch up to them, and to plod through  this semester together.
But sometimes life seems too good to be true.  I strongly believe the saying "If it's too good to be true, it probably isn't true."  Sometimes I worry that all this will be taken away.  That I won't be able to complete senior year with these guys.  I remember my first semester of college, and the amazing time I had.  This semester seems even more incredible than that.  And I remember the heart-wrenching pain of having to drop out second semester.  I'm really scared that it might happen again.  Sometimes I just want to freeze time as is-freeze the happy memories as we snapchat across the classroom, or try to take each other's things, or go to a range, or get Insomnia cookies, or learn about the difference between an '85 and '86 Toyota, or really just do life together.
Last Thursday was rough.  I came of three back-to-back tests.  I do. not.do.well. in back-to-back tests.  Ever.  This time was no exception.  My body ached with the changing weather (#bonemarrowprobs), my shoulder hurt (#heavybackpack), my brain seemed to be on fire (#engineering).  And then I was scrolling on Facebook before class.  And saw a tribute to a woman I met at Cancer Con.  She had a table right next to Rainbow's, and sewed "Survival Organs." Adorable little stuffed things shaped in different tumor and cell shapes.  She had her first baby at Christmas time.  She was the very picture of vitality and happiness, and youth- and suddenly she was gone.  It stung.  The wonderful thing about Cancer Con was meeting so many incredible people.  The horrible thing is that I hurt whenever one of them is gone.
To add to it, a friend I made at the Gathering Place young adult retreat, called saying her cancer had reoccurred for a third time, taking her out of a clinical trial. I know life isn't fair, but sometimes it's really hard to accept how things can go so well for some people, and not for others.  
The minute I was finished with my first round of tests, I had today to deal with.  My first day at Survivor Clinic.  As awesome as it sounds, I was terrified.  I was supposed to be in survivor clinic last year, but instead they found the hemolytic anemia, which triggered an awful steroid regiment.  I dreaded today, and what they may find.  It's really hard for me to differentiate when I'm tired from all the schoolwork, and when there may be something else going on.
Monday night at my campus Bible study, my verse for the night was from John 13:7 "Jesus [said], "What I am doing you do not understand now, but afterward you will understand." It was the best reminder, because right now there is SO much I don't understand.  I have so many questions about all the stuff that has happened/continues to happen to me.  This verse reminded me that Jesus said I won't understand right now.  I don't know when I will understand, but I can be strong in the promise that I will understand.  One of my favorite songs right now is "You Remain" by Saints.  The chorus goes "You are Undeniable.  You are God, and God you are able.  The storm will rise-So let it rise!- because we believe, that you'll remain faithful." This song has been running through my head, and in church, and on Ean's phone, for the last few days.  It has been such a comforting reminder to let the storm rise, because it gives God an opportunity to show himself faithful to me, and the others in my life.
This morning was so hard.  I had two classes, which was a good distraction, but after that I had about 30 minutes to kill before I had to go to Cleveland; blessings on the friend who allowed me to hang on their sleeve the whole time. I didn't want to go.  It took everything I had just to walk down the long hall in ASEC to leave my friends and go to my car.  I literally dragged my feet, as I didn't want to face the unknown.  And God reminded me to let the storm, if any, rise, because He is faithful.  And with that confidence, I was able to go to Cleveland.
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Well, I wrote this eleven days ago.  I wanted to find out test results before I posted it, and haven't had a chance yet to do so.  I found out all my tests came back almost normal and I'm thanking God for that.

A Christmas Memory

Three years ago today I was officially diagnosed with relapsed Hodgkin's lymphoma.  Oncology clinic was only open a half day, and I remember going with my dad that Monday morning.  Even though it was Christmas Eve, life went on as usual at oncology.  I remember them presenting the various chemo options, scheduling a date for surgery for my port, and reviewing my blood work.  I remember hugging my nurse a Merry Christmas, and feeling so overwhelmed as she held me.
           That Christmas Eve, I had just finished my first, absolutely fantastic, semester of college. I had played in a string quartet at a Christmas service.  Presents were wrapped, guests were coming in to spend the holiday, and it seemed a quintessential Christmas celebration.
          But it wasn't.  Through the whole weekend I, and my family, savored every moment. Petty disputes were dismissed, and trivial mishaps ignored.  We were together. For how long, we didn't know.  I don't remember what gift I got, or what gift I gave,  but I remember being there all together.  Through Christmas day, neighbors and friends dropped by, to celebrate Christmas with us.
           Here I am, three years later.  I've just finished my seventh semester of college, and really well for me, all things considered.  I just played a string quartet service with my siblings. The presents are wrapped, and the house is ready for the impending arrival of the guests.  It's easy to get caught up in the hustle and bustle of the holidays.  Dinner guests and engagements, staff meetings and Christmas parties- life is busy. But I don't want to forget what is truly important.  What Christmas is really about.  It's about the birth of a deity, come down to man, to save us from ourselves. God gave his "only begotten son", so that we may have eternal life.
          I think the key word is gave.  God gave, and so should we. Christmas is about giving- maybe giving presents to family, but so much more than just that.  It's about giving love to the unloved. It's about giving cheer to the unhappy. It's about giving kindness to the forgotten.
This Christmas, give outside your normal giving zone.  Maybe you always give to the Salvation Army bell ringer- that's great, but perhaps it's time to go a little beyond that.  Maybe give a gift to a hurting or needy family. Buy some items of a non-profit's Amazon Wish List.  If you're short on the cash, give of your time.  Volunteer at the City Mission or Haven of Rest; cook dinner at the Ronald McDonald House. Walk the dogs at One of a Kind Pet Rescue.  Clean the home of an elderly friend.  Invite a lonely person to share your Christmas dinner.

         The weekend before that Christmas Eve, I had spent in the hospital, following a spleen biopsy.  That was one of my most memorable hospital stays.  I was there technically just for observation, so I was free to roam around.  Rachel stayed with me, and with our reindeer antlers we owned the halls. We made K-cups of Starbucks coffee, ordered all sorts of food, and happily watched Hallmark movies.  It was a special sister weekend, even if it was spent in a hospital.  At that point, I knew the cancer had returned, but didn't know the specifics.  We both knew it was a last hurrah before I would be back in the throws of treatment. And I saw Santa Claus.  I know he isn't real, and I've never believed in him.  But that Christmas, I needed something childish and fantastical to believe in.  Reality was overwhelming, so I entered the magical fairy tale of Santa Claus, and became obsessed with him. My child-life helped me Skype with Santa, a very special memory!
          But I was blessed to be able to be home for Christmas.  There are many who aren't so blessed.  They'll be spending Christmas in a hospital room.  Their four bleak walls bear no Christmas cheer.  They long for the company of their family and friends. Maybe go sing some carols, or take some small Christmas present in a fun wrapping paper. I think this Christmas carol is a fitting end:

Thou didst leave Thy throne and Thy kingly crown,

When Thou camest to earth for me;

But in Bethlehem’s home was there found no room

For Thy holy nativity.

O come to my heart, Lord Jesus,

There is room in my heart for Thee.

This Christmas, may there be room in all our hearts for the reason for Christmas, Jesus.  

Christmas 2012

Answered Prayers

Often I post specific prayer requests on my blog; but I know there are so many of you who consistently pray for me, regardless of special needs.  I wanted to share an incident that happened just last week; because of the suddenness of everything that happened, we didn't get to tell many people about it.  The wonderful thing that happened through this, is that many of my college friends and I were able to pray together and see God answer our prayers! So... to back up and tell the full story!
Two some weeks ago: My family had been passing around a cold, and I finally got it.  I got a pretty severe cough, that was hanging on!

Wednesday, December 4th:

Early Afternoon: My dear nurse Ceci called almost daily, to check up on me.  That day I was feeling quite poorly, and a little short of breath.  My oncology team consulted, and asked me to go to the emergency room.
Late Afternoon: Well, being the stubborn girl I am, I decided not to go to the ER right away.  I wasn't feeling well, so I was pretty sure I would be admitted into the hospital, and made up my mind to make the most of my remaining free time!
My friends had invited me to go make photo snow globes with them, and then join them for dinner. We had an incredible time capturing most of our friend group in our snow globes and I had an amazing dinner (because I thought it would be the last time I would get a decent meal in a good while)!  One special moment I wanted to share...while I was standing in line, I was pretty nervous about what the doctors would find. My friend Heather saw me, and walked over to me.  Putting her arm around me, right in the middle of the cafeteria, she prayed with me, and asked God to allow me to finish the semester and that I would be healthy. 
During dinner, my Dad called; he was away on a business trip, so couldn't come with me.  My Mom was nervous, because the last time I went to the ER with lung trouble, I ended up in the PICU.  Dad said to firmly insist I be put in oncology, or he would fly up right away!
Evening: I went home and picked Mom up to go to the ER. Keeping with my stubborn self, I refused to pack clothes or anything else and we left.  Thankfully, Rachel had packed a bag of snacks and clothes and other such necessities. 
Night: After we got there, they needed to put in an IV.  I'm an extremely hard stick and so was understandably tense about it!  However, God blessed us with an amazingly kind and loving nurse, Shifra.  She assured me she would only try if she like what she saw-and she got an IV on the FIRST TRY!
A chest X-ray came back clean for pneumonia! Another answered prayer! Mom and I were both shocked, because I certainly didn't sound/feel like my lungs were clear!
Next they wanted a chest CT...which meant another, larger IV! It was an EMT that was going to try and I wasn't to sure about it.  She said she would just look, and if she didn't see anything, she would call Shifra.  Well, she got her IV on her first try! It was nothing short of a miracle that two different nurses would both get an IV on their first tries! It was such a reminder that God was watching out for me, and had guided their hands, and cared about even the smallest details!

"Brown Girls"
Shirali, Jahnvi, Mandy and I

Snow Globe Pictures!
Most of our little group!

Thursday, December 5th

3AM: Since they didn't find anything anywhere, I got to go home! And even though it was incredibly early, it was wonderful! I slept until noon! Although I had had a test that morning, Jessica, my wonderful helper at the Office of Accessibility, had spoken with my professor and gotten it moved.  My orchestra director also allowed me to skip rehearsal that afternoon. 
Late Afternoon: I finally went to college; however, I was able to take my sidekick John! We had a blast together as we both did our work, with our friends Sharon and Craig Bernard. The four of us enjoyed hot chocolate and cookies and had a productive afternoon together!
Evening: My final concert! John was able to meet our director, Dr. Bordo.  It was a blessing to join in prayer with other musicians before the concert.  Mom and the kids came, bring Ms. Kathleen, our piano/cello teacher.  It was such a special blessing that she came, as I knew she wasn't feeling well at all, and how hard it is for her to get in and out of our van.  Also, Naokosan came, bringing her four oldest.  It is always a joy to see them, as they are such an encouragement to me.  Also, my nurse Ceci came, bringing her dad! She had promised to come to a concert, but I knew Thursday nights were extremely difficult for her, not to mention she is coming from more than an hour away! I saw her walk in just before the concert began, and it was just the most special thing in my heart to see her there. 

I felt so blessed and so privileged to have so many people  that love and care for me, there to cheer for me.  All I could remember is the incredible love of God, because I do not deserve any of this. 

What I had asked my friends to pray is that God would give me until my last final, on Friday, December 13th, to be out of the hospital.  It was so close to the end of the semester, and I wanted so badly to finish all my work.  I'm so grateful and humbled that God was gracious enough to allow me my heart's desire, and be able to finish my semester!  

The Love of God

The love of God is greater far
Than tongue or pen can ever tell;
It goes beyond the highest star,
And reaches to the lowest hell;
The guilty pair, bowed down with care,
God gave His Son to win;
His erring child He reconciled,
And pardoned from his sin.

Could we with ink the ocean fill,
And were the skies of parchment made,
Were every stalk on earth a quill,
And every man a scribe by trade,
To write the love of God above,
Would drain the ocean dry.
Nor could the scroll contain the whole,
Though stretched from sky to sky.

O love of God, how rich and pure!
How measureless and strong!
It shall forevermore endure
The saints’ and angels’ song.

With Mom at home, with the beautiful flowers Mrs. Ceci brought!

Hello All!

I haven't blogged in a while because life has been rather busy, but I wanted to give everyone a quick update on what's been happening! I am back in school and greatly enjoying it.  I do get pretty tired, and the work is intense, but I wouldn't be anywhere else.  My professors are wonderful, and very gracious when it comes to accommodating my oncology (and pulmonology, and endocrinology, and all the others...) appointments.
I was also able to join the UA Symphony Orchestra, as a violinist, and I'm really enjoying it! Music played such a therapeutic role in both my cancers, and I'm so blessed to be able to be involved again. I'm also excited to be playing with my first orchestra ever!
I've also enjoyed being with all my wonderful friends again, and enjoying all the new friends I've made.  From going to events and getting free stuff, to helping each other with physics homework, to playing in the orchestra, to trying to figure out calculus problems at 10:30 p.m., to planning service events, to encouraging and teasing each other...I'm so glad to be back with all of them!
So far (medically) my counts seem to be doing alright.  However, since I'm just finishing up the final medications from my pneumonitis situation, my October counts will be the accurate set we can go by.  I just had a CT of my lungs today, and next week I'll be getting a Pulmonary Function Test (PFT) and seeing my pulmonologist again.

Thank you for your continued prayers!

Various Visitors...

So many friends have graciously come and visited me.  Thank you friends, you always brighten my day!
However, there are strict rules in the ward about visitors, since everyone here is immunocompromised.  This is an important way to protect us, because if we get sick, we will become extremely sick, have to take tons of antibiotics, and feel really bad. Maybe you've never thought about the implications of getting sick when you are immunocompormised, but even the simplest cough or cold can become a really big deal.  The ward has some rules in place, to help protect us from getting sick.

1. No one is allowed to visit if they have a cough/cold/fever or sickness.  
2. No fresh flowers or plants are allowed, as they carry germs
3. No latex balloons, as there are kids allergic to them.  Only helium balloons are allowed
4. Siblings under 12 are only allowed to visit twice a week; a nurse checks them at the door and takes their temperatures.  They are only allowed for a maximum of 3 hours, and they cannot leave my room.  While I know the importance of this rule, it makes me very sad to not be able to see David, John, and Ruth very often :( 

Here are some pictures of dear friends who've visited ...

Xioajuan and Weigang, with Ruth, who was also visiting that day!  

L-R: Sno, Daffodil, John, me, Weigang, Xiaojuan, and Ruth squished in on the side!
Daffodil has become a special friend of mine!  Also, note the beautiful balloons they brought!  

Ricci, Sno, Xioajuan

Sno and Xioajuan signing my door...in English and Chinese!  

Another dear friend who came at a different time...Hua.  She's wearing a mask because I was getting my dressing changed, and everyone must then wear a mask.  Thank you for taking the time to visit!  

 Mrs. Webster was my toddler Sunday School teacher.  She graciously volunteered to stay the night with me, so my parents could go home and prepare for my arrival!  Interestingly, the night she stayed was probably my worst night ever, but she was just as loving and kind as my own mother.   She brought me some DVDs to pass the hours, and a bag of lemon napoleon candies- sour!! Thank you Mrs. Webster!

The whole gang with Mrs. Webster

A tired looking bunch...

Reading books from the hospital library with Dad.  Even thought he is reading to John and David, the whole family is listening, cuz Dad always adds twists and funny sayings to the story, so we're all always on guard to catch them!  

One of my most favorite visitors...he always climbs into my bed! Do you know who he might be?!?!? 

I always have so much fun when my siblings come!  Usually mom will pack them food, and they'll come and eat their lunch/dinner here.  It gets a little crowded, but it's totally worth it!  Then we usually watch a movie together, since there's not much else they can do in the room.  Sometimes the little guys will bring a box of Legos. When they come, they always bring me beautiful pictures and cards to hang in my room.  Often, the Pet Pals visit when the little guys are here.  That's a ton of fun, because we all love dogs!

Occasionally the big boys will come during the day, with their school work, and we'll just hang out.  However, I must say they usually disappear when I start to puke! Once I'm finished, they'll reappear with water, wash clothes, and paper towels and help me.

The Clan getting some hot chocolate....yum!

One of the worst thing about the hospital is that there is no little people chatter.  The only noise is the nurses talking, or IVs beeping.  I really miss hearing the noise of my family, and just being with them.  I'm looking forward to being with them soon!

The whole bunch (+2 cousins) visiting on Easter Sunday!!

Family friends visiting Cleveland stopped by...Thanks!  

Goofing off with my best friend Christina...

And not all of my visitors are from outside the hospital...Here I am with the BMT Nurse Coordinator- Sharon. She really gets stuff done!  Thanks for dropping by! 

And sometimes I goof of with a nurse... fun, fun fun!!

With Mrs. LiBassi...she surprised me with a visit, which was perfect because  just then I had to drink my CT contrast (nasty stuff), and she was my cheerleader.  Here we are posing with the EMPTY cup! Thanks Mrs. L!

With Abbie, my pastor's daughter.  Unfortunately, I didn't get pics of her parents!  They brought me a stack of books to keep me occupied, and I had so much fun doing puzzles with Abbie! 

The Terrific Therapists!

While doctors and the medical team do their best to help heal my body, the amazing therapists here help keep my mind in shape! They help make the long, boring days at the hospital just a little bit shorter and lot more fun!  I'd like to introduce you to this set of amazing ladies...

This is Emily.  She is a music therapist.  She plays many instruments, and sings like an angel.  I've often heard her accompanying kids on the guitar, with songs ranging from "3 Little Monkeys" to "Jingle Bells"! At my request she brought me a beautiful electronic keyboard, and a pedal! She also threw in a piano solo collection!  I've so enjoyed playing through the music book, as it is filled with hymns, folk songs, and classical piano pieces.  When she visited once, I played and she sang! I also brought piano music my piano teacher had given me especially for the hospital.  The keyboard enables me to practice (I try to daily!) as music is both therapeutic and enjoyable.  Thank you Emily!

The next therapist you've met before- Angela!  She makes so many amazing things happen around here!  If there's ever anything I need, from hair washes to bunny ears, to diaries and lip balm, she'll somehow find it and bring it!  She's like a magician, conjuring fun ideas, wanted items, and always with a smile!  She also coordinates the volunteers for the play room and special events.  Thanks Angela!  

There's also another child life I'd like you to meet- Lisa!  Her main job is in the outpatient oncology clinic, but she also covers the inpatient.  She always has a sympathetic ear, that I can pour out my worries or complaints to; she will respond with a well thought out and comforting answer, that always calms me.  Thank you Lisa- for always being there when I need you!  

Last, but not least, is the art therapist- Michelle!  Before my BMT hospitalization, I'd never before met Michelle, but I'm so glad I have!  On the days I'm not feeling up to going to the play room, she brings me stuff to do in bed!  She has brought me oil pastels and art supplies kits, along with drawing pads, to help unleash my inner artist :) She also finds cool kits, like a pop-up-book and mini drawing easels to help pass the time in bed.  But I think her greatest find was duck tape!  I'd never done duck tape crafts before, but after she brought me a tote kit I was hooked!   One Friday, she scrounged around and brought me all the duck tape kits she could find, so I would have stuff for the weekend.  It was awesome! Rachel and I made roses, and wallets, handbags, and so many cool things!  Now most weekends I spend my time creating with duck tape!  Thanks Michelle!  

Spring Fling!

One of the patients here had the brilliant idea to hold a "Spring Fling" party, which was on Good Friday.  The Amazing Angela (the Child Life Specialist) documented all the details that this patient had envisioned for this party, and made it happen, right down to the formal invitations!!  It was an amazing party, and I had an awesome time!

Hanging out with Olena, one of the many amazing volunteers I've become friends with! 

The morning was spent painting Easter eggs, which I've never done before.  A lady from the Kylie Jane Long Foundation brought all the necessary supplies.  She got the kitchen to hard-boil 72 eggs, and helped everyone decorate the eggs.  We used decorated shrink wrappers, rubber bands, and crayons to make cool designs on the eggs. The craft room was full of kids happily decorating!

Painting my first Easter eggs!  

Rachel and I doing our eggs

There was a really fun game to open the party.  On the center of five plates were two small jelly beans.  Then a nurse covered the jelly beans in a veritable mountain of whipped cream.  Each plate was set before five people sitting in chairs, with their hands behind their back.  The five included the two pediatric residents, the palliative care doctor, and two nurses!  On the count of three, each of them used their face alone to find the elusive jelly beans and place it outside the plate first! It was hilarious to watch each of them with a face full of whipped cream.  I'm proud to report that my resident, Dr. Brown won first place!! Unfortunately, the pictures of his whip creamed face turned out too blurry to post :(

Doc Brown hugging his prize- Brutus!

People had donated a sno cone maker and a cotton candy maker.  There was also pizza and an ice cream sundae bar.

Friends sharing sno cones...

The ice cream bar; note the invitation on the right

After the eating festivites, Rachel brought out her nail polish, and we had a nail party!  All the little girls loved it!

Rachel painting Carla's nails...

Little Totty wanted to paint Big Miranda's nails...and Miranda graciously let her!  

Everyone left with a huge Easter basket.  One nurse's church made and donated all the baskets. There were enough baskets for all the patients, and even all their siblings!  The baskets all had different themes, and were age and gender coordinated, with candy and fun goodies. Thank you to those who made them!

Some  of the Easter goodies!

All in all, it was the most fun I've had in a very long time.  But it couldn't have happened without so many people who had given of their time, energy, and money to make a special Easter celebration for the oncology ward.  A huge thank you to the many people who worked so hard to make it happen.  People like you are tangible reminders of the love God showed at the very first Easter, and helped us have an amazing Easter weekend.  

The Easter Bunny with her basket! 

Thank you to whoever packed this awesome basket! 

Random thoughts and pictures...

EEG at 8a.m. this morning

Well yesterday morning I scared the wits out of my mother, with a "seizure" scare!  As a result, I've been started on anti-seizure medications.  I also had an MRI and EEG done;  So far, the results have been clean!

I came back to my room to be greeted by my friends Leah and Caleb.  Unfortunately, I don't think I was a very good hostess, as I fell asleep halfway through their visit!  Still, thanks for visiting guys!!

  Signing the mandatory wall of friends...

The Three Stooges...what are we to do with them?

More friends to brighten my day...Cody, Christina and Allie

Goofing off....all except for me of course 

A new friend...

This post is about my new friend Azul.  Azul is 6 years old, and we've really stuck it of since we met  in January.  She basically acts as the translator for her Spanish-speaking mother, and she always wears the cutest shoes (can you spot the white heels in the above picture?).  Her favorite colour is pink, she wears loads of jewelry  and she has a younger brother and baby sister.

Making crafts together...and soaking up the sunshine :)

We're both starting to look tired...

Good-bye!  We're going to our rooms to rest!

Family, friends, and other fellows!

I've been blessed to have nearly daily visitors.  However, only when my mother is here do I actually get pictures of these wonderful people!

All my lovely siblings...they are the greatest!  They always are ready to fulfill my every whim and fancy, decorate my room, and adjust their lives to help me.  Thanks guys!!

With Angela and Azul in the craft room.  Angela is a Child Life Specialist- I think it's one of the best jobs ever!  She is always ready to explain a procedure, find an activity to do, or just generally cheer everyone up!

Here's a shout out to Angela, as well as all the other Child Life Specialist that rock Oncology!!

 Dr. James Brown, my pediatric resident

 Nurse Kathie Smith- she is my surgery nurse, who dropped by for a visit!

Nurse Lauren, who took care of me today!

Just a brief look at all the people who make my time in oncology just a little bit more tolerable!