Amanda

Sam

Seamus

Sonya

Survivor Stories

The final part of my book is complete! Here are the scans of the survivor stories.

 

Oooopsies

Forgot to add the intro!

 

J'ai Presque Fini!!!

Almost finished! I've done everything but the survivor stories [so if you have one, send it to me as soon as you can!].  Here is all of it:

Cover

 Opening page and acknowledgments

Contents

Procedures

 Physical side effects

Emotional side effects

Spring Break!

Well, spring break is over now.  It was wonderful and productive.  And I have new pages for the book!  These are about the people that you meet during your stay in the hospital.

 

As Promised...

Finally, here are the rest of the pages I've done!

These are terms that are commonly heard around the hospital

And these are other meds commonly taken while in the hospital

 

 

Booooo

I'm absolutely horrible at updating this blog.  I do apologize.  My lack of updates doesn't mean I haven't been working, though.  Here's a progress update:

This section is about the different types of treatment [chemo and radiation] and also a few common chemo drugs

And that's all for tonight because my internet is taking entirely too long to upload the rest of the photos.  Tomorrow, I promise.

Success!

I have, for the first time since having this laptop, figured out how to use the scanner with it!  As a celebration, here are the first two pages of the book I've put together. It may seem familiar, considering it was in my last post.  [Please excuse how crooked they look, I only said I figured out how to use the scanner, not make things look perfect.  Get used to this.]

Some Stats

I found some statistics from St. Jude's Children's Hospital regarding childhood cancer that I'll most likely be adding to the book.

Facts about Childhood Cancer

• Cancer is still the leading cause of death from disease among U.S. children over one year of age.¹ Cancer kills more children than cystic fibrosis, muscular dystrophy, AIDS, asthma and juvenile diabetes combined.²
• In the United States, among children, from birth to age 19, more than 18,000 cases of cancer are diagnosed each year.³
• This year, acute lymphoblastic leukemia, a cancer of the white blood cells, will be diagnosed in about 3,000 U.S. children, making it the most common pediatric cancer.⁴
• Childhood cancer survival rates in the United States have increased from less than 20 percent in the 1960s to almost 80 percent today.¹
• The increase in childhood cancer survival rates can be partly attributed to the progress made against the most common childhood cancer, acute lymphoblastic leukemia, as well as advances in treatment and research made in the past few decades. Researchers have made strides against pediatric acute lymphoblastic leukemia, raising survival rates from just 4 percent 50 years ago to 94 percent today.⁵
• While progress against childhood cancer has been made, cure rates for some pediatric cancers remain below 50 percent.³
• The causes of childhood cancers are largely unknown.
• Childhood cancer is not one disease entity, but rather is a spectrum of different malignancies. Cancers found in children are biologically different from those seen in adults.
• The 10 most common types of childhood cancer are as follows³:
• Leukemia (acute lymphoblastic leukemia and acute myeloid leukemia)
• CNS, brain, and spinal cord tumors
• Lymphomas, (including Hodgkin and non-Hodgkin lymphoma)
• Skin cancer and melanomas
• Soft tissue tumors (including rhabdomyosarcoma)
• Germ cell tumors
• Neuroblastoma
• Bone cancers (including osteosarcoma and Ewing sarcoma)
• Renal cancer (including Wilms tumor)
• Retinoblastoma
• Among the major types of childhood cancers, leukemias and cancers of the brain and central nervous system account for more than half of new cases.¹

1. National Cancer Institute
2. Centers for Disease Control and Prevention
3. Surveillance Epidemiology and End Results/National Cancer Institute
4. Blood, Vol. 99: 4257-4264, June 15, 2002, No. 12
5. New England Journal of Medicine, Vol. 360:2730-2741, June 25, 2009, No. 26 

Change?

I've gotten some really great ideas from a few people and I can't wait to get it all started.  However, I feel like I want to move away from the "ABC" idea and instead move towards just a kind of guide of what to expect.  It seems as though it would make more sense, considering I have such a wide variety of words.  I'm thinking of having the following categories:

Medical Terms and Medicines
Understanding Your Diagnosis [feelings and emotions you may experience]
Life in Janet Weis Children's Hospital


I may or may not add more to these categories, but I feel like these cover what I previously had written.




On a very sadly related note, I want to send my love and thoughts to my dear friend Kelsey's family.  Kelsey passed away this past Wednesday, February 16 after a long battle with leukemia.  I was truly fortunate to have met her and call her my friend. Rest in peace Kelsey, we will never forget you.

What To Say...

I have created definitions/sentences to describe the terms I had listed.  The words being described are bolded and I have little notes that are from my personal experiences italicized.

I have them divided in chunks by letter.  Each letter will have its own page [or two, depending on how many words I have].

People who have cancer are often anemic, which means you don’t have enough red blood cells.

Not enough red blood cells will make you feel very tired. 

The doctors may have to do an aspiration that involves removing fluids from the body with a needle.  Don’t worry; they’ll give you anesthesia so you don’t feel anything.

If you have any allergies, they may give you atarax for it because it prevents allergic reactions.

To keep you from getting too sick, you may have to take Bactrim, which is a big antibiotic pill.

I hated taking Bactrim; the doctors had to watch me take it because if they didn’t, I would never do it.

Benadryll is also used for allergic reactions; it will make you feel sleepy though! 

Sometimes, a biopsy, like an aspiration, must be done.

                I had to get a biopsy on my birthday once! 

Your blood pressure will constantly be monitored. 

Cancer is caused when the body can’t stop making a certain kind of cell. 

                My cancer was called acute myelogenous leukemia, or AML.

A CAT scan is like an x-ray, but you’re lying in a big metal tube. 

Chemotherapy, different medicines that stop cell growth, is usually given through an IV.

                Chemo tends to make you feel sick when it’s killing the cancer cells.

Child Life will help you out in the hospital; they have games, books, activities and lots of other fun things to do! 

                Ashley was my Child Life specialist!

If you have a fever, the nurses may do blood cultures to see what is causing it.

One type of chemo is Cytoxan.  Many cancers are treated with Cytoxan at some point. 

Eventually, your body might feel sore from being so sick.  The doctors may give you dilaudid, a very strong pain reliever. 

Another chemo medicine is called doxorubicin, and it’s a bright red color. 

It can turn your tears red! 

If the doctors need to see your heart, they might give you an EKG, short for echocardiogram.  They put some goopy Vaseline on your chest and hold a metal wand on your skin. 

It lets you see and hear your heartbeat on a computer screen!

Etoposide is another kind of chemo that you may get. 

If you’re sick, you may be put on fall precautions and have to have someone with you when you get out of the bed to make sure you don’t fall.

                I had a blue fall precaution bracelet.

When getting chemo, it is likely to get fevers. Fevers are caused by infections and make you feel very hot and very cold. 

Receiving fluids through an IV can help with fevers. 

It may be necessary to receive G-CSF that helps good cells in your body to grow.

Another chemo drug is gemtuzamab, which is very, very strong. 

Gemtuzamab is sensitive to light, so the nurses have to wrap it up in tin foil; It’s fun to watch them.

When you get chemo, your hair will most likely fall out.  This happens because chemo kills cancer cells as well as other cells, like hair and skin.  Losing your hair is no fun, but you get to wear lots of fun hats and bandanas and wigs!  Your hair can also come back different than it was before – it may be straighter, curlier, thinner, thicker, or even a different color!

My hair fell out right before Christmas.  I was sad at first, but then I got to wear hats all the time.  I had a reputation for my hats!

Hemoglobin is a very important cell.  It carries oxygen throughout your body and gives you energy! Heparin may be given to clear out IVs so they don’t get clogged with blood cells and medicines.    

And one thing to keep in mind is that you should never, ever be afraid to ask for help if you need it, whether it is about feeling sick or just wanting the TV turned off.

                People always want to help; sometimes it feels like having servants!

When you get chemo, you will get it through an IV.  IV is short for intravenous, which means in the vein.  It may sound scary, but they are taken care of by the IV team who know everything about them.

I once had IVs in both hands and they had to attach boards to them so they wouldn’t slip.  I felt like Frankenstein when I tried to move.

Having cancer really isn’t fun, so to keep your spirits up, it’s good to tell jokes!  It may be difficult to do at first, but hearing something funny can always make you feel better.

                The nurses used to come in to listen to comedians with me.

Sadly, many kids have cancer.  You may be able to meet some in the hospital and make friends with them.

                I have a few friends I met while I was a patient that I’m still friends with now.

               

Along with jokes, it’s also important to laugh!  Again, laughing will help you feel better. 

Chemo can do a lot of weird things, like make you sensitive to light too.

                My mom called me a vampire because I liked my room to be dark.

Lotion might also feel good because your skin might get dried out from the chemo. 

If your mouth hurts from having sores, you may be given magic swizzle.  Magic swizzle is like a mouthwash that makes your mouth all numb and tingly.

                It makes you drool too, so watch out!

Methotrexate is another type of chemo. 

When you’re getting chemo, you’ll be hooked up to a lot of monitors – heart rate monitors, respiratory monitors, blood pressure monitors are a few. 

If you’re in pain, you may be given morphine, a very strong pain medicine.  It is very similar to dilaudid.  You may also be sent for an MRI which is very similar to a CAT scan. 

They make a lot of noise, so don’t be scared. 

Chemo can make you neutropenic.  Neutropenia is when white blood cells are very low, which makes it very easy for you to get sick.  When you’re neutropenic you may not be able to eat fruits or veggies with skins on them, eat at buffets or have plants or flowers in your room.  This is because they can all have bacteria on them to make you sick. 

You’ll have to wear a mask if you want to go out when you’re neutropenic.  I wore a mask to go to a concert while I was neutropenic, but I got in trouble anyway.  It wasn’t fair.

Neupogen is a type of G-CSF that helps to grow white blood cells and fight neutropenia.

You’ll probably hear the word oncology often.  Oncology is the study of cancer.  Your doctor is called the oncologist.

                My oncologist is Dr. Taylor.

If you are under 21 years old when you first get cancer, it’s considered to be pediatric cancer.  You might be in a pediatric hospital with other kids.

Platelets are also given through the lines.  Platelets are in your blood and are very important because they help to clot blood and stop bleeding.  Chemo can reduce the number of platelets your body has.

                I always thought that platelets looked like orange juice.

To get chemo, you may have a PICC line or a port.  A PICC line is like an IV in your arm, but can stay in for much longer because it is a strong plastic tube.  A port goes under your skin in your chest and is accessed with a special needle and can stay hooked up to an IV like a PICC line.  PICC lines and ports are also called central lines, and make getting things like chemo, medicine and other fluids much easier – they can also take blood through them, so you don’t have to get a regular needle every time. 

                I hate needles, so having a PICC line was a lot nicer than being stuck with a needle every day.

You may also have to wear a Puls-Ox on your finger.  It doesn’t hurt; it’s just like a band-aid with a red light that measures the amount of oxygen in your blood.

                It works if you put it on your toes too!

Questions are important.  Never be afraid to ask your doctors, nurses, family or friends anything that you may be wondering about!

Sometimes, chemo is not enough to fight the cancer, so you may also get radiation.  

And when the cancer is all gone, you’ll be in remission!

                My remission date is July 1, 2007.

The nurse giving you chemo is an RN, which stands for registered nurse. 

If you have a central line, it will probably be flushed with saline often.  Saline is a fancy name for salt-water.  This keeps the line from getting dirty and blocked up. 

                You can sometimes taste what goes into the line.  Saline makes your mouth taste salty.

While on treatment, you may notice that sounds are louder and smells are stronger.  It’s almost like having superpowers!

                I was able to smell the dinner cart when it was coming down the hall through 3 sets of doors.

Taste can also be affected by chemo.  Foods may taste completely different than they should because the medicines can sometimes mess around with your tastebuds.  

                I drank Coke once, and it tasted like green grapes.  It was odd.

If your central line gets blocked with anything, the IV team will come in and administer TPA, which is a special solution to unclog IV tubes. 

Sometimes you’ll feel too sick to eat anything.  If this happens, you’ll get TPN, a white solution of different nutrients that you receive through the central line. 

Transfusions are very important.  If your body does not have enough red blood cells or platelets, they can get transfused through the central line. 

I always liked getting blood transfusions because they make you feel less sleepy all the time.

A tumor is generally what causes cancer.  Tumors are solid chunks of the excess cells that have been created.

Chemo tends to make people sick, so it’s likely that you’ll have an upset stomach.  There are medicines to help you feel less sick though.

When you’re sick with a fever, you may get vancomycin, a strong antibiotic. 

I found out that I’m allergic to vancomycin.  I get Red Man’s Syndrome, which is just what it sounds like – my skin turns red.

And you’ll always be getting your vitals checked – your temperature, your blood pressure and other things.

White blood cells are some of the most important cells when you’re getting chemo.  They are the cells that help your body fight infections, and when they start to come back, it usually means you’re getting better!  

When your hair falls out, you may choose to get a wig.  A special hairstylist can come in and take measurements of your head and look at pictures of your hair to make a wig that looks just like your old hair! 

When you’re in the hospital, you’ll also have a lot of wires everywhere because of all the machines.

                I used to get all tangled in my wires and have to call the nurse in to help untangle me.

You might have to get x-rays done to look at bones or other parts of your body.

It stinks to be young and have cancer.

                I was 15 when I was diagnosed; LAME!

If your stomach isn’t feeling good, the doctors may give you Zofran, which is supposed to make it feel better.

Well Hello There

Welcome to my blog.  This will constitute the second medium required for the honors project, with the first being the book that I am making.  The book will be an ABC book of cancer for young people.  I don't want to say kids because I have the hopes that teens will be able to look at it and not get bored, yet still have it written in a way children can understand.  Perhaps even parents will be able to gain some knowledge from it.

I want the book itself to look like a kind of scrapbook.  I plan on creating something with lots of colors, shapes and fun writing.  I may or may not have pictures included within it.

Each letter of the alphabet will be highlighted with different terms and phrases that relate to the journey through cancer.  Some letters will have more words than others, depending on the importance of the words.  As of right now, the list looks like this:

A: Ara-C [cyterabine][leukemia], Ativan, Atarax, anemia, anesthesia, aspiration

B: Bactrim, bandanas, Benadryll, blood pressure, biopsy, bone marrow

C: Cyterabine [ara-c][leukemia], cancer, chemo, Cytoxan, Child Life, CAT scan, culture, codeine

D: Daunorubicin [leukemia], Doxorubicin, dilaudid

E: Etoposide [VP-16], EKG

F: Fever, fetanyl, fluids, fall precautions

G:  G-CSF [Neupogen], Gemtuzamab

H: Hats, help, hemoglobin, Heparin, hair

I: IV, IV team

J: Jokes

K: Kids

L: Laugh, LPN, lumbar puncture, light

M: Methotrexate, MRI, morphine, monitors

N: Neupogen, neutropenia

O: Oncology

P: Pediatric, PICC line, port, platelets, Pulse-Ox

Q: Questions

R: RN, red blood cells, radiation, remission, reactions

S: Saline, sound, smell, skin

T: Transfusions, TPN, TPA, taste, tumor

U: Upset stomach

V: VP-16 [etoposide], vancomycin, vitals

W: White blood cells, wigs, wires

X: X-rays

Y: Young

Z: Zofran

This is a rather large list, however I will be narrowing it down within the next few days.

Another aspect of this book that I have been debating about adding is putting in footnote style captions relating back through my journey with cancer.  I have not yet fully decided on whether or not to do this because while it will personalize the book, it may become too personal.  I want those who read it to know that it is not written by some doctor who merely studied oncology, but rather by someone who has been through everything mentioned within and can actually relate and understand what is going on.  But at the same time, I do not want to make it a story about myself.

The purpose of this blog is to keep track of the progress being made within the book.  It will also contain some personal research done regarding some of the more specific topics that will be mentioned within it.