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...

Manpower:
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.
Meals:
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

Time:

• 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!

Donations:

• 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."

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

Endoscopy

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! 

T- +30

Monday marked my fifth week in the hospital.  While it has been sooooo long, things are starting to move along!  I've been taken of the TPN, and have been able to keep solid food down for a few days now.  I've also been switched back to oral antibiotics and anti-nausea medicines, in preparation for going home!

Right now, the doctors are trying to schedule surgery for tomorrow, to take out my tri-fusion catheter line.  So currently, it looks like it might be able to go home by the weekend!!
 
Please pray that I would be able to take ALL my many pills (which usually runs around 2 dozen pills!!), that I would keep being able to eat, and that the surgery would go smoothly!

My many cards from friends, my siblings, and the University of Akron's Women in Engineering Group! Thank you everybody! I can see all the cards from almost anywhere in the room, and they are a HUGE encouragement to me!!

Moving Day!

Because of the water condition in Rainbow's oncology ward, the entire ward was moved to the Seidman Cancer Center- the big shiny glass building.  I especially wanted to let those who want to visit know, to save you a long walk!
It was a humongous undertaking, as all the patients, medical records, and so much more had to be transported to the other end of the hospital! Kudos to the nurses, doctors, and numerous volunteers for helping make it such a smooth move!!

Rachel packing all my stuff up! 

Who knew how much stuff I could accumulate in four weeks!!

The Princess preparing her personal belongings

The move could not have been done without the help of volunteers. Here are two helping load carts with all my stuff, including my refrigerator!  

One of the many carts

Rounding up all the stuff...

The Princess and her entourage!  (I didn't say that, the others did!) 

What with the pole and all, it is a two-person job to take me anywhere! 

My royal escort...

My new room has a lovely view, in both day and night.  

Rachel already beginning on decorating my new room! 

A lovely towel origami swan to welcome me to my new room...