Tuesday, April 30, 2013

Nurses- They Dispense More Than Medicine

When we envision hospitals, I'm sure all of our pictures include nurses.  Maybe we picture a women in a starched white uniform, a little cap resting gently on her hair, perhaps dispensing medicine.  But I would contest that that picture would be far from accurate.  Not all nurses are women.  Most do not come in a set uniform, but were varied scrubs, designed to bring a smile to the children they serve.  Some, as you will read, do not have hair to place a cap on.  Nurses, though, do dispense medicine. However, they dispense so much more than simply medicine.  I'd like to share some of the other things they dispense...
They dispense medicines.  I can only imagine how hard it must be to administer chemotherapy, knowing what it is going to do to the one you are giving it to.  Yet, these nurses do it, always double and triple checking with other nurses dosing, medicine and patients, to try to eliminate human error.
One of my many medicines...

Nurses Leslee (L) and Allison double checking the medicine
They dispense empathy.  Some shaved their heads, in support of St. Baldricks, raising money for childhood cancer while empathizing with the children they serve.  I've known these nurses from before St. Baldricks, when many had lovely long hair.  In a sense, I was always sad to see their shaved heads, but I always felt special knowing that while I lost my hair, they had the love to voluntarily cut theirs.
Nurse Kathie, with her St. Baldrik's t-shirt!

They dispense care for the body.  It's chemo.  You throw up-A LOT.  I've sat puking my guts out countless times, only to suddenly find a nurse behind me, with a wet towel, rubbing my back and speaking comfort until I'm done, then taking the dish from me.  I was always amazed at how quickly a nurse would come when I was sick.  It's like they have a 6th sense that they are needed...
Nurse Nancy on BMT day, my crowning day of puking.  
They dispense care for the spirit. They don't just care for patients physically, but also emotionally.  My dear outpatient nurse, Ceci, specially came to see me inpatient, especially when I was really discouraged, to try to lift my spirits.  On bad days, my inpatient nurses have spoken so many words of encouragement, on how well I had done, or how I was nearing the finish line.  And they call the Child Life Specialist :)
They dispense laughter. They are willing to dress up, clown around, and do countless other things to bring a smile to a hurting ward.  Laughter isn't a sound that usually echoes through the walls of oncology; but when it does, there's usually a nurse or two or three behind it!
Remember them?!
They dispense love.  Nobody fills the place of a mom.  There are times when we need dads and brothers and sisters, but I think that when we are sick, we need the love of a mother most.  However...my mom wasn't always with me.  My nurses have so often filled that void, whether it has been physical or emotional support and help, or simply a little extra love.  While many are mothers, even those who are not poured out their love, usually in friend-to-friend conversation.
Christy, a very motherly nurse
They dispense kindness.  Little gestures mean so much.  My nighttime nurses worked to coordinate all my vital measurements/blood sugar readings/medicines/weighings to be at the same time, so they could minimize when they woke me up.  They worked their best to schedule everything so that I could maximize my sleep.  They always worked as noiselessly as possible, to achieve their mission.  I would never wake when they entered or exited; they only thing that would wake me was the taste as they flushed my line, or the pain when they pricked my finger.  No matter when I asked, they would cheerfully change my sheets, or bring me a drink or snack, or fetch my sweater.  Little gestures that make a difference.
The lump under the sheet is me sleeping. Nurse Shannon
They dispense encouragement.  I ate a cracker.  Cheering.  I ate my pills. A hug. I only was toting half my IV pole. Congratulations from everyone I meet. The nurses were always cheering me on, no matter how big or small the milestone.  They were always so genuinely excited, sometimes over seemingly insignificant details.  I was discharged. Dancing, clapping, hugs and tears, a ruckus.
They dispense hope.  Cancer is a tough thing to deal with.  When you are in the midst of everything, it's really hard to see the light at the end of the tunnel, to imagine yourself healthy and well.  Many of these nurses have been here for years, and have seen hundreds of patients.  They have encouraged me countless times, with stories of patients with my same cancer or teens my age who are now done with treatments; some are in college, some married, some with families of their own.  Regardless, it was always a glimpse of hope, that one day I would be out of the hospital and living my life; one day they'll be able to encourage some other hurting patient with my story.
Nurse Sharon, the BMT Transplant Coordinator

It's not easy being a nurse-especially an oncology nurse.  I've rarely seen them sit; usually they are constantly on their feet, as they rush to silence one beeping IV after another.  There have been kids who simply scream to summon their nurse, but they always respond. They are always available.  A simple press of a button would bring one to my side.  Most work 12 hr shifts.  You have to deal with incredible sadness, as not every patient will make it.  You're in it for the long haul.  Leukemia (the most common childhood cancer) treaments can last for three years.  Patients are in the hospital for weeks and sometimes months on end.  From speaking with my nurses, I've come to realize that most of them regard it not as their occupation, but as their calling.  This is reflected in their attitude towards patients.  Some have gone on to become certified oncology nurses, devoting their entire career to bringing hope and comfort to kids with cancer.  My oncology nurses showed me so much love and kindness through my journey, and I'm indebted to each one.
Two special nurse stories...
Early in my treatments, I was alone at the hospital.  My family was in Akron, and my dad at work.  I had passed the day studying, but in the afternoon, I became quite lonely.  An upsetting visit from endocrinology was my last straw, and I began to sob into my pillow.  My nurse for the day, Shaina, appeared out of nowhere, and for no valid reason; she kindly spoke to me, and comforted me, even though I refused to say a word.  Her gesture of kindness helped me through that long day.
This story isn't about an oncology nurse, it's about a nurse on the 3 person Palliative Care team.  Helen visited me mainly on the days Dr. Yip was either sick or unavailable.  But she was always so kind and loving and encouraging.  Towards the end of my BMT, when I was really discouraged, she was always a bearer of hope.  I remember one especially rainy day, when the gloom outside seemed to mirror the gloom I was feeling.  She pointed to the storm visible from my windows, and reminded me that every cloud has a silver lining; the sun ALWAYS shines again.  Every time she visited she would say that the sun would shine again, both actually and metaphorically; she was always reminding me that I would get out of the hospital and that the sun would shine on my life, enabling me to move forward to help other oncology patients one day.

My outpatient nurse since my original diagnosis of cancer is Mrs. Ceci.  I remember my very first visit to Oncology.  It was late in the evening, I was tired and hungry, and then was told I needed to me admitted.  It was an emergency decision, and I was really scared.  Ceci stayed well past her scheduled hours, sharing comfort, love, and kindness to my parents and I.  She has never stopped being a tremendous support to me. She has often given me advice when I'm at a crossroad, hope when I'm lost, and love when I'm hurting.  When I was diagnosed with my relapse, I didn't express any emotions for nearly two weeks, which worried my parents.  My dad begged me to simply cry, and release what he knew was inside me.  On my next oncology visit, it was on Ceci's shoulder that I first cried about my cancer.  During my BMT, I was extremely discouraged one day.  My parents had gone home to Akron, and I was with Rachel.  She stopped by, in between her work and a meeting, to encourage me.  She pointed me to my only hope, God, and gave me the strength to endure through the evening.  She has so often counseled me and loved me like her own daughter. I'm so blessed and proud to be able to call her my nurse!

Thank you to each of my wonderful nurses!!

Saturday, April 20, 2013

The Ronald McDonald House

One of the most recognizable restaurant chains, especially to the very young :), is the golden arches- or McDonalds.  While they are probably best know for serving burgers, one of the incredible outreaches of McDonalds is the Ronald McDonald House-RMH.  There are more than 300 hundred houses in over 50 countries.  "RMH acts as a place to stay for families with hospitalized children who are receiving treatments.  They provide over 7,200 bedrooms to families around the world each night, with an estimated $257 million in lieu of hotel costs."
My family was blessed to be able to stay at the RMH in Cleveland during my BMT.  It is conveniently located walking distance from both the Cleveland Clinic and University Hospitals, though they do provide shuttle service. RMH was an incredible blessing to us all.  It was so nice to know that if I needed something, or something came up, or I was just having a down day, that my parents could be there in five minutes. Also, as my parents and Rachel alternated spending the night with me, it eliminated the nearly hour drive back home.

At RMH, each family receives a room, that contains two double beds and a bathroom.  The Cleveland RMH is currently expanding to 54 rooms, to be able to accommodate even more who request to stay.
Our room...with extra mattress
Through the foyer and building are several open living/relaxation areas-couches, fireplaces, bookshelves with books and DVDs.  Because the RMH is currently under renovation, a few of the rooms were closed, like their play and art rooms. There are also TVs, a piano, and a Foosball table!
One of the family areas

The laundry room
There is a huge dining area, that contains two lovely kitchens, completely stocked with food, down to spices!  There are also several refrigerators  there are two communal fridges-which contain condiments, staples, and communal food.  Then there are the family refrigerators and freezers.  Each family has a box in which they can store their personal food items, that they either cook or purchase.
Family fridges and freezers

Part of the dining room; piano in the back

The entrance to the dining room
RMH fills a very great need, as it relives a burden for families with sick children, from all over the world.  My family met several families from the Middle East, most of whom have an extremely limited English vocabulary.
Families at RMH have children with varied medical needs.  One little tyke needs 5 organ transplants, and has been here nearly a year.  An 8 year old received a heart transplant.  There are kids with cancer, from out of state and out of the country, many for BMT. There are also several families with children in the ICU.
Playing outside with new friends!

Joseph and Yassar. He is 12 and was my neighbor at Rainbow, as he also has cancer.  He is from Saudi Arabia, here with only his dad.  He barely speaks English, but always has a smile!
Foosball with Yassar; 
Rachel, David and Walker- who received a heart transplant
One of the things we learned at the Cleveland RMH is that they have less then a handful of people on staff, but over 150 volunteers.  Volunteers play a vital role in RMH.  Most evenings and some afternoons there was dinner provided, as various volunteer groups brought and cooked dinner.  Some nights volunteers would come and entertain the children.

There are many ways you can help RMH.  Volunteers my family met represented restaurants, businesses  college groups, churches, and individuals.
Here are just a few ideas...

My dad's company has volunteered at RMH for many years.  They go in with simple manpower; their projects have included painting, renovation, yard work, and simply house cleaning.
Many groups and individuals make meals. They make use of the full kitchen facilities of RMH.  Some meals are simple, others fancy, but all fill the universal need for nourishment.  One group had a "Ballpark Feast" with hot dogs and the like.  One lady single-handedly made custom salads for each guest.  The "Lovely Lunch Ladies" made a full Easter dinner! "Home-style Dinners" was meatloaf, potatoes, and strawberry shortcake. Our church made chicken, potatoes, salad and brownies.  Most of the college groups made Mexican tacos.  All leftovers are put in the communal fridge, so that families can use them later.  There is no limit to what you can make! It is a blessing not to have to think about cooking meals for the family, when there is so much going on medically.  And for patients like me, who dislike the hospital food, my family would bring some of the leftovers, which I could eat.
Starting seeds


  • Every Thursday night a couple Case students came to RMH.  They came simply to entertain the kids there, playing board games for a couple hours.  
  • Periodically, groups from Ashland University came with activities   Once they had egg dying, another time tie-dye t-shirts. Entertaining the kids for a few hours also gives parents a bit of a break!
Games for the big...Catan

And the small...Chutes and Ladders!
  • Money isn't the only thing you can donate! However, if you do eat at McDonalds, they always have a donation box- just drop your change in!
  • Books and DVDs- they have a library collection.
  • Toys- one boy asked for toys and games for RMH, in lieu of birthday gifts for himself.
  • Handmade items-quilts, hats, pillowcases...small gifts that show someone cares.

The kids with our adopted grandparent, the Abbots

David and John making puzzles

The benefit of homeschooling-you can do it anywhere! 

And your teacher is always with you...

Chocolate milk! 

Simply having fun!
There is so much we who live in our homes take for granted.  RMH has so many families that haven't been home in months.  They are already going through a great family trial of having a child in the hospital.  For many from out of the country, there is also a huge language and culture adjustment, not to mention the food! There is so much that we can do to help ease the burdens in their life.  Please look at this link from RMH entitled 100 Small Gestures-"Sometimes it's the small gestures that can make a family's burden a little less heavy when they are caring for their sick child.  Help us offer even more small gestures to families who need them by making on of your own."

Finally Home!

I'm finally home!  It is so wonderful to be back with my amazing family in my lovely home.  It was kinda a whirlwind (and sudden) discharge;  on Wednesday morning I was cleared to leave, as soon as my tri-fusion catheter was removed.  There was an opening in the schedule, so out it came Wednesday afternoon! AND, I got to keep it, which I think is really cool! Thursday morning I was discharged, and after doing some major packing home I was!
With Mrs. Webster, just before my tri-fusion came out.  Both my parents were at our home, and because the surgery was scheduled so suddenly, neither had time to come to the hospital.... and I was a little nervous! God sent Mrs. Webster at the exact instant that I was being taken; two minutes later and I would have been gone!  It was so comforting to have such a dear and loving friend with me for the procedure; it was also a reminder of God's love to me, that He prompted her to come that day at that time! 
Ready to leave!
Because I'm still severely immunocompromised, our entire house had to be thoroughly cleaned before I could come home; this was much more than your average house clean- everything had to be wiped down with sanitizers, to be as dust and germ free as possible!
Though I'm home, there are still several restrictions I have to follow. For instance, I can't eat fruits or vegetables that aren't cooked, unless they can be peeled, and no fast food.  I can't be in crowds, including church or shopping stores.  I need to limit my visitors to people without colds/coughs/fevers or that have family that is sick.  My family also has to be careful not to interact with those that are sick; please pray that we all would stay healthy and infection free as I recover!

My last night at the hospital, two different friends asked me what was the first thing I was going to do when I got home, which of course I hadn't thought about!  So I decided to list 10 things that I've really enjoyed these past few days, roughly organized in the order I enjoyed them.  

  1. Sit OUTSIDE!  Mom said nature was celebrating my discharge, as it was nearly 80 degrees that day- no small feat for Cleveland, where two days later it is snowing!  It was lovely to feel the wind blowing, soak up the sun's warm rays, and just smell the great outdoors!  
  2. Walk on carpet- and barefoot! No more hospital flooring! 
  3. Cook my own dinner and have my own food! I love to be in the kitchen, so I really missed it.  I made myself mac 'n' cheese shells for dinner. Also, I hate hospital food, and haven't eaten any of it for the last four weeks of my stay. It's so nice to have so many edible choices available at any time.
  4. Play a real PIANO!! I greatly enjoy my piano and violin, and have missed them immensely  While I had a keyboard at the hospital, there is nothing like a real piano (not to mention it is my piano) to play on; also, I had all my music to select from!  My sister was afraid I was going to overtire myself from playing and valiantly tried to get me to stop... 
  5. My own bed and bedding! No more standardized sheets or blankets, or the plastic mattress or pillows (which can get unbearably hot). 
  6. See Duino! -Our (my) cat, who our music teacher has graciously been hosting for the last several weeks.  It is wonderful to have her home again! 
  7. Eat good food! I haven't eaten so much in months! My dad made my favorite Indian dishes that I've been enjoying...well I've been enjoying all the food.
  8. Sprawl on the furniture...I'm no longer limited to a hospital bed or chair! And no medical staff to interrupt our family times.
  9. Wear t-shirts or anything I want again! Because of my tri-fusion and Mediport access and IV lines, I only was able to wear button down tops.  I also only wore certain no-frills clothes to make it easier to adapt to the multiple IV lines and other inconveniences of the hospital.   Not to mention I couldn't/didn't take my entire closet with me.  It's really nice to only have to consider the weather when I choose my clothes.   
  10. And most importantly, being with my family!! I've missed them so much...It is absolutely incredible to be back together again.  I love hearing the many sounds of a busy household- both indoors and out- and just being able to do things with them  whenever I want.  
A family again
The beauty of God's creation
A beautiful filled chocolate "Welcome Home" cake from our dear neighbors!
I feel like a released prisoner, enjoying the tastes of freedom once again.  Thank you all for your prayers, supporting words, visits, and outpourings of love.  While this has been an incredibly long and rough road, which isn't over yet, I'm so grateful that God has brought me and my family through this time.  His grace has always has been and always will be sufficient for what we need.  The day I was discharged, I heard a song that has often comforted me, as it reminds me of God's amazing power.  

You Are I AM
I've been the one to shake with fear
And wonder if You're even here
I've been the one to doubt Your love
I've told myself You're not enough
I've been the one to try and say
I'll overcome by my own strength
I've been the one to fall apart
And to start to question who You are

You're the one who conquers giants
You're the one who calls out kings
You shut the mouths of lions
You tell the dead to breathe
You're the one who walks through fire
You take the orphan's hand
You are the one Messiah
You are I AM

Thursday, April 18, 2013

Discharge Day!

Just a really quick post to tell everyone that I'm currently on track to be discharged this afternoon!  I just wanted to let everyone know, so that no one was planning on visiting or mailing anything :)
I'll update this post later!

Wednesday, April 17, 2013

Ports and Procedures!

One of the things about cancer treatments is that there is a great need for IVs.  The chemotherapy medicines, because of their extreme toxicity, need to be given as close to the heart as possible, in order to dilute them in the blood, as fast as possible.  There is the need for numerous blood tests, to check hemoglobin, white blood , chemistry, and piles of other counts (which for me are taken daily!)!  I have really bad veins; before one of my surgeries, it took four tries to find a vein to anesthetize me- my veins, if they could find them, would collapse quickly, or blow- not to mention that it hurts like crazy!!

The Mediport
So I think one of the most marvelous inventions of all times is the Mediport.  I have had one installed for each of my cancers, and it has been a tremendous blessing! It is a surgical procedure, performed under general anesthesia   While the port itself is usually placed in the chest, they make an incision in the neck, to guide the main catheter line as they thread it.  Usually, my neck is soooo much more sore than the incision!  The port is a small reservoir (described like a metal Coke bottle cap) that is placed beneath the skin.  A catheter attached to the port empties into a major vein, in my case the superior vena cava. The port is surgically implanted, and is completely underneath the skin.  At the hospital, my port is "accessed", so that it is usable.  It is an idea like a snap button- one side is inside my skin, the other is outside.  The nurse will "snap" a needle into the center of my port (which you can feel); the port can now be used to draw blood or deliver medications.  It is a guaranteed access each time, eliminating the need for needle IVs!!

My Mediport incision.  The circle is the approximate location of the port- it's about the size of a quarter.  The arrow points to the dressing of my tri-fusion catheter.  
The Tri-fusion Catheter
For my BMT, I needed more than one vein accessed; I have had, at times, four different lines accessed with medications!  So I received a tri-fusion catheter, similar to a Broviac.  My catheter has 3 lumens, for three different accesses.  This procedure was done by Interventional Radiology   I was only under a "twilight sedation", which is basically la-la-land.  Interestingly, I heard the doctor explaining the entire procedure to a resident!
The tri-fusion sticks out of my body, which means that it needs flushed (so that blood doesn't clot in the lines) daily.  When I was at home, I flushed the tri-fusion myself each evening.  Also, there is a large dressing that covers it at all times, which means I cannot get it wet (because of risk of infection).  If the dressing peels or opens, it is necessary to clean and redress it, as there is another risk of infection (a sterile procedure which my parents and I also did at home!).  The tri-fusion is temporary, unlike the Mediport, which can remain in a person for a year!  I will be getting my tri-fusion removed before I go home!

My Tri-fusion catheter dressing
White arrow- where the tri-fusion is placed
Orange outline- a Stat-loc, which keeps the line taped in place on me
Black arrow- the outline of the three access lines

The three access lines; they are three different colors so that you know which ones you have used.  The arrow points to the lumen, or opening of the catheter lines
I have also had one other anesthetized procedure- an endoscopy.  The doctors wanted to examine my stomach, to determine the extent that my body had healed.  This procedure was also carried out by regular surgery, under a general anesthesia.  The basic idea is that a long tube, with a camera on the end, is stuck down your throat, to take pictures.  Also, they gathered a few biopsy samples from my stomach and intestines.

Ready for my endoscopy with Daffodil and Chuckles!  
My port and tri-fusion have convinced me of the need for new and improved medical devices.  These two medical devices have helped make my treatments so much more comfortable.  There is little we can do about the chemotherapy medicines or their side effects- they are necessary to kill cancer cells.  However, the field of medical devices holds so much potential to help make the lives of oncology patients so much more comfortable!

Pictures for Today

Thank you to all who have been praying for me.  Here are a few pictures I thought you would enjoy as I progress on my BMT journey! 
From this Christmas tree...
To this- nothing! I'm free!

The Masked Bandits- John and Chuckles

The gang visiting-I think there were three different games going! 

The daytime view from my room- Severance Hall, the newer buildings of University Hospitals, and much of the campus of Case Western.  The night view is harder to capture, because of the street lights.  

The Healing Garden at the Seidman Cancer Center.  There is a beautiful  labryinth in the center of the conch shaped garden, with fountainsand benches.  At night, the outline of the garden is lit up in different colors! 

Visiting with family...

And friends!