What is Ewing Sarcoma Cancer?

What is Ewing's Sarcoma?

Ewing's Sarcoma is a very rare form of bone cancer that strikes children and adolescents. Actually, it is a group of four different types of cancer, known collectively as the Ewing's Family of Tumors (EFT). About 250 cases are diagnosed every year in the U.S. The good news is that two-thirds of patients are long-term survivors of the disease. Although it can occur at a younger age, most Ewing's sarcoma cases are found in children aged 10 to 20. White children, particularly boys, are much more likely to have EFT than any other racial or ethnic group.


Ewing's sarcomas are caused by chromosome changes that occur after birth. In a process known as translocation, chromosomes 11 and 22 "swap" small pieces of each other, resulting in an abnormal gene that can be detected with DNA testing. However, it's not known why this translocation takes place. There are no identifiable risk factors that increase a child's susceptibility to Ewing's sarcomas, and it's not passed along from parent to child like some inherited childhood cancers. In fact, it's extremely rare for it to happen more than once in the same family.

Doctor's House - MAMC

This is a picture of what Tommy calls the Doctor's house AKA Madigan Army Medical Center

(MAMC - Ft. Lewis). Many of the patient rooms have great views of Mt. Rainier which is why they have over laid it on the picture. Tommy's in a large private room with an awesome view of her! The two water fountains you see are fairly new and usually there is two swans that swim around them, yes! Live swans!! And there are ducks - Tommy and Papa (Kim's dad) have ducks out there (wink, wink) so Tommy needs to check on them and give Papa updates about their ducks every time we are here.

Today I was able to get the Red Cross orientation done, a few more things and I'll be an official Red Cross Volunteer on Tommy's floor. You might call up here and it will be me answering phones or maybe I'm holding a baby who's parents cannot be here all the time to help and visit, and I might be putting urine sample kits together. Whatever it is, I'm happy to help with all that they are doing for us.

Maggie Mae and her daddy are coming up for dinner so I better get ready for them. Look back later tonight for pics!! <><

What Is Neutropenia?

Tommy will become neutropenic and many have wondered and asked what is it, how does he get, how does he get over it and why. I have done some Internet research and found the following sites to most helpful in describing this illness. Feel free to click on these links and spend just 60 seconds reading about it.

http://www.chemocare.com/managing/fever_neutropenic_fever_and_their.asp

http://www.google.com/search?hl=en&q=nutrapenic

Tommy is on five total chemo meds and they are split in to groups and administered at different times. The treatment Tommy gets this week is two different types of chemo one right after the other and then followed by two bladder treatments to protect it. This is done every day for a total of five days and is spread out over a period of time so it really ends up being six days that we are here.

These two treatments are pretty low on the side effects for him -- not always the typical response from others. Next week he'll be a little tired and sluggish, but each day will be a little better than the next. To help boost his white cell count and get to feeling better sooner, we give a shot every day called GCSF. Then we'll come back two times next week to test his blood to see if his cells are rising or lowering and based on the results, depends on how many days total he has to have a shot. We're working with Tommy so that he can do the shot himself, meanwhile mom gets the lovely duty as dad is a chicken about it. I usually try to get Tommy to pick where he wants the shot - most often though it's a butt cheek by mom's choice.

The next three chemo meds are then grouped and given one after the other over a period of three days. These drugs are nasty! They attack his mucus lining leaving horrible soars in his mouth, urethra and other areas all which are a MAJOR discomfort. These three chemos also are very tricky to stay ahead of - meaning, one minor slip in his meds and he's throwing up. Most kids his age just let it go where ever, but because he's been subjected to so many practice runs, he's able to find his bucket and and do it on his own. What's sad is he'll put himself back to bed without even telling us - most kids cry after they get sick. We have a pretty good system in place by using trash cans with liners in them (plastic trash bags) and they are only his throw up buckets one in his room, one down stairs and one for the car.

In addition to these three having horrible side effects, these also kick his system so hard that he falls neutropenic about 8 days later which lands us back in the hospital again for 3 - 4 days.

When alls said and done, we spend nearly two weeks of every month at a minimum in the hospital and still come about 5 - 10 days outside of them just for tests. Tommy's already picked up on the fact that so many different people here know him and asks why and how.

Seeing how we are here more than any where else, I am going to be a Red Cross Volunteer on Tommy's floor. Tommy's out circling the floors as it is, so being a volunteer is an ideal and great thing for me to do as I feel it's my way to give back and help.

Well, I know my mom is looking at the time I post this so I better get going. Keep rocking out those prayers. <><

Back at it AGAIN

Here we are at the DR's house,
no way can a 3 year old be quite as a mouse.

Tommy's here for his chemo again,
We arrived here yesterday and it's when we began.

Lucky Charms, Froot Loops and pizza he eats,
to keep up with Tommy, mommy needs football cleats.

Our best friends are the DR's and nurses,
my mommy's shopping on line for new purses.

Maggie is not happy without her mommy,
ha ha ha - she's here with TOMMY!


Tommy's six day chemo treatment began yesterday - and is doing well with it. We've managed to come up with the right mixture of antinausiated medicine. If I never watch the movie Cars again, I'll be happy! Tommy's one of those who can watch a movie a zillion times in a row (we know he didn't get this from his dad).

He's been riding in his car, pretending he's mowing grass as we walk the halls, played video games, watch movies, played with toys. Later tonight we'll do a bath and watch another movie (hope it's NOT Cars).

Surgery has been moved to August 8. We sure are looking forward to our visitors all coming in the next several weeks.

Hats off to Gee (Tommy & Maggie's name for Grammie Williams) - Gee has rallied all her friends up to send Tommy hats! Now that Tommy is bald, we keep a hat on him at all times when we aren't home (protection from the sun and so people don't stare all the time at him). Tommy is so excited to get all his new hats - our hearts are filled with love and appreciation for Gee doing this AND to all of you who are participating.

Gee also works for a large international architectural firm in Scottsdale. Her company, FITCH is desperate to help and support Tommy. We as parents are just speechless to have FITCH taking care of our Tommy.

I'm taking pictures, but don't have a way to upload them to the site right now, so check back in a day or two for updates and pics. <><

Gearing Up

Geez! Where did the week go!?? Hard to believe it's been nearly a week since I last "bloged" to all of you in blogger land. Well, the week went fairly well for Tommy. A few days where he didn't want to be away from mom -- so he worked with me a few days. He got a REALLY cool hat from Karris -- they both go to Aunt Suzanne's (daycare). It was pretty cute watching Karris give it to Tommy and how they both reacted.

Every day Tommy asks if we are going to the DR's house (hospital) and get a Scooby Tail (an IV in his port) -- he's looking forward to it and makes sure we're gonna stay a bunch of nights. LOVE that he loves it there.

We will be packing this weekend for our week long of chemo for next week. Then he's off till surgery I think?!?? Daryl's going to try and get on a trip not sure if it will be the first week of July or the day after surgery. Sorry sistas -- (Memory & MeShell) you might not be seeing Daryl on your visit -- but that's the hole of idea of having help is what I tell him. He's not suppose to be here when you are -- the idea is to have visitors for "help" -- he just wants to try and wine and dine and entertain like we would normally (heck, me too!) -- but it's ALL about TomME right now. Sure are glad to know you'll both here when one of the two flying options works for him.

Well, it's time to get back to work -- keep checking on the blog for updates and keep those prayers going -- next week and the week after could be really hard on Tommy. <><

Improving

Good morning! Tommy had a frantic and painful day yesterday with the blood transfusion and side effects of everything! He had a pretty restful night and only got up once. His "numbers" all seem to be holding or improving so it appears as though he's on the "up and up" -- AMEN!

The game plan seems that once all the DR's communicate they will work on sending us home ~ yahoo! Would you believe Tommy's NOT happy about going home and was crying about it. Dad and Maggie Mae are getting ready to come up and visit us. We haven't seen them since Thursday so we're excited they are coming.

Tommy's surviving on pizza, Lucky Charms and Froot Loops -- Kellogg's, General Mills or the pizza chains should pick him up for a spoke's person! If you got any contacts with any of them, let us know!

Okay, gotta get our bags all packed now so we can rock and roll when we get those walking papers. Our next chemo treatment is a week from Monday. <><

Blood Transfusion

Tommy was hooked up to his Scooby Tail for IV fluids about ten minutes ago and I have just signed the consent form so he can get a blood transfusion. He continues to have fevers, pain from the soars in his urethra, body aches and no desire for food or drinks. Perhaps in the next 24 hours that will all change with the IV fluid and blood transfusion.

No telling for sure when he'll be able to go home, but taking a wild guess, it might not be till after the weekend. Then a week off and back again for a six day chemo treatment. Whew, we're spending about 50% of our time here. The man on the phone is getting to know me by my voice when I order Tommy's food -- pretty sad!

Will blog more later -- been up since 2:30 and I'm pretty tired. <><

Back in the Hospital - click on pic to enlarge

Here we were this morning waiting for his echo gram of his heart. He was feeling so-so at this point. His blood came back lower than yesterday but we were hoping we'd make it till tomorrow before anything (IF anything) was going to happen. So we took Dad to lunch, got home and when he was burning up with a 102 fever, we put our bags back in the car and he and I drove back down the hospital AGAIN! It's about 25 miles one way -- so we've driven our share today.
Here he is with Nurse Sandy who says Tommy looks just like her brother when he was Tommy's age. He LOVES this car -- we walk rounds and rounds around while racking up the miles on this race car.
Nurse Sandy getting another listen to his heart.
Oh good! My happy Tommy is back! After getting a fever of over 102, we finally got it down and he was feeling MUCH better.

Now it's nearly 10:30 PM and his temp is starting to rise again - typical for the that to happen at night and he's not drinking much. I'd guess he'll get an IV of fluid tomorrow and we will be here for a few days. <><

Verge of a Blood Transfusion

Tommy's been to the hospital yesterday and again today. His blood cells are nearly at their all time low and no sign of avoiding a another wipe out like the first time. The DR is so confident that by tomorrow Tommy will need a platelet transfusion he has us coming in at 1 PM. This doesn't mean he won't still need a blood transfusion over the weekend either he said.

It's official, Tommy now weighs the same as Maggie. It makes me so sad to see all that he's going through. His coloring right now looks terrible! He's all skin and bones, just about kills me to see him like this.

Daryl has pulled himself off the Japan trip so that he's here to help with everything going on. Maggie knows something is up -- she's not sleeping like her normal self and is VERY clingy to Mom these days!

Let's all keep the pray line rock'n like our Lansing, MI Warriors! <><

New Family PetS

Guess we have, FOUR cats! Mama and three babies have taken residence in our backyard and now we have four outside ONLY pets. Tommy said to me "aren't those kitty's so cool mom? I love those kitty's".

One is all grey, so he's Gilbert from Caillou -- a show on PBS that is one of Tommy's favorites. Another one has bold stripes, so he's Sarge. The last one is Baby, it's the one that looks most like the mama cat and stays the closest to mama -- Maggie also calls the kitty's "Baby". And bet you guessed it, mama is mama.

I know I can hear EVERYONE of you!!! I AGREE - we don't need the extra work. Trust me, they will NOT become indoor cats, not now and not ever!!! We didn't go buy the cats and didn't ask for them. They have been living in our wall and just discovered them. They are wild cats I guess you could say. We're not even going to get a litter box -- plus, who's to say they don't leave as soon as they cam to us.

For now, they are fun to watch play in the yard and gives Tommy and Maggie something to laugh at. It's also a good distraction for Tommy with all the pain he's had lately.

Took Tommy to the DR today -- he has all the signs of a bladder infection. We will know by tomorrow what's going on there. Meanwhile, his cell counts are falling and nearly at zero, which is typical. Now, we pray (and need YOU to too) that the shots we're giving him helps boost those white cells back up as soon as possible. We are now entering the danger zone where the cells could drop to zero and he winds up in the hospital again for a transfusion and fluids.

I'm keeping Tommy home for the next couple of days. He'll work with me while Maggie goes to Aunt Suzanne and Uncle Dan's (daycare). Daryl leaves Friday and I pray to God, we pull through it without a trip the hospital or it will be rough this weekend on me. PRAY PRAY PRAY!

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Surgery Update

We just got notice that Tommy's surgery will be July 18, 2007 at Seattle Children's Hospital. We were relieved to discover his surgery will be a "piece of cake" as the DR said. They expect to only need to cut out the current scar and the tissue from it. The fully expect Tommy to fully function with his foot afterwards. AMEN!!!

Daryl's sister and brother-in law will be here July 5-7. My sister and nephew will be here for Tommy's surgery, and the grandparents (Tom & Barb) will be here for Tommy's birthday. We think some where in there my other sister is going to be coming, looks like it will be a busy month and lots of visitors.

Daryl leaves this Friday for a trip to Japan. It will do him good -- he misses the flying and it should put him in good spirits. I'm sure there will be at least one bed buddy, if not two in my bed while he's gone. The trip falls right when Tommy's count will be at his lowest, so prayers please that he pulls through it and doesn't get admitted to the hospital like the first time he had this chemo round.

Just like the first time, Tommy's in a lot of pain. He often wakes up and isn't able to walk because of the pain and needs massages. He's taking Oxycodone for the pain if that tells you how severe it is. He also gets really bad headaches and I assume they are like migraines -- he needs the lights turned off, a wet cloth and often wants me to rub his head.

There's two foods that he has survived off of since chemo started, pizza and Lucky Charms. He had both again today -- at least he's eating. As you can tell from this picture, he's lost all of his hair. He still has his eye brows and eye lashes for now and hopefully won't lose them but it's possible.

Thank you for all the responses you make on the blog -- we need and appreciate them and read them to Tommy so he knows what you are all saying. We also appreciate all the phone calls, mail and packages. Most of all, we appreciate the prayers -- keep them going please!
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Playing DR

Things are still going good and strong after this treatment. We know we have to keep the meds pushed around the clock or he'll get sick -- will be hard to do at home without Scooby Tail. Scooby Tail is the line that connects to his port (IV). Ever tried to wake a 3 year old in the middle of the night to tell them they have to take medicine. Uh, it's about as good as trying to fly a kite without wind -- it doens't happen easily.

Well, Tommy took a nice 4 hour nap today and when he woke, he was life of the party. Nurse Fay and Auroa (a sweet and beautiful 16 year old who is nearly done with her chemo treatment, YEAH!!!) walked the halls with Tommy and I while Tommy pretended to drive his car and mow the lawn.

Tommy got a hold of a syringe that screws to his Scooby Tail and decides he wants to play DR at 11 PM tonight. All of a sudden in a VERY scared and nearly crying voice, he says "MOM! LOOK!" Uh, he successfully screwed it in to the IV and pulled back on the syringe which pulled out blood -- YIKES!!!!!!!!! Ok, this is a real emergency, so I tell him "DON'T MOVE! DON'T TOUCH IT!" and I pulled the rip cord from the wall knowing EVERYONE was going to come running! It seems we are on a pattern of this happening at least once in everyone of our stays. Good thing these nurses love us!! They have never seen this trick from a patient before! WELL, they just haven't had Tommy! He watches EVERYTHING and he can tell you if you are doing it right or not or how to do it the way he likes it. So he knew where to screw his syringe at -- in fact, he often does it for the nurses and helps them inject whatever it is. I'm sure he'll end up either a realtor or in the medical field after all this. I say realtor because he is spending lots of time with me these days while I work. I showed a home on Sunday with him and it was more like he showed the house and I was tagging along. He did a pretty good job too -- the prospect even said, "oh, I see he's done this with you before".

Well, it's not pushing midnight and he's still awake so I better go so we can both get some sleep.

<><

So Far, So Good

Good Morning. So far, so good with everything. I've heard just when you think you have a system working and know how to ward off the illnesses, it all changes. It is not what I really want to hear, but at least it might be a reality. Guess we'll go in to every treatment with some fear. At least right now for the treatment we are doing, he's doing SUPER!

Last night I didn't think Tommy was ever going to go to sleep. He loved me singing to him (even if I sing off key) and rub his cute little bald head. We must have kissed each other a thousand times -- he was so cute, loving and trusting in me, it made me cry. Tommy was so cute at taking away my tears and telling me to stop. We finally said our prayers and just when I would be about to sleep, he'd turn his light on "Mom, I want to tell you something". Oh boy, we finally both gave up about midnight or thereafter.

We still have one more treatment to do...not sure if we'll be going home tonight or tomorrow morning. Then we still need to head in to the storm which is about 8 to 10 days later and hope we don't end up like the first time where his white and red blood cells are totally wiped out and end up here again.

The other challenge he faces right now are the other side effects this chemo treatment gives him....body and bone aches so bad that he cannot walk, needs narcotic drugs and lots of massages.

Daryl's doing a great job at holding down the fort and taking care of our Mag's. He also works everyday at McChord where he schedules all the flights going out for his squadron. And he either comes for lunch or dinner to see Tommy most days. It's a hard routine on all of us, but nothing like what our Tommy faces.

Keep a rock'n and sending out those prayers -- we love you all and thank you!
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Chemo Again

Tommy's doing well with his chemo treatment so far. This is the one that made him super sick the first time. We hope we have him well medicated to avoid that this time around. I managed to flunk my pre-med -- while "sucking pee" (taking Tommy's urine sample) I managed to spill the ENTIRE cup! Chemo pee is EVERYWHERE and all i can do is panic and then call for the nurses. LOVELY. Now it's nearly 9:30 PM and it's cleaned up, Tommy's full of it and wants to walk the halls, but won't let him. So he's running circles in his room pretending he's driving and yelling "beep, beep!" one minute and pretending he's mowing the yard the next minute while taking a break every now and then to see what's new in his room to discover. His latest word is "that's cool!" and it's so cute to hear him say it.

Well, keep your prayers going we still haven't reached hour one of when he got sick the last time (it's about 3 hours away) and we're praying he doesn't. Will give more updates tomorrow so check back often and know we greatly appreciate all your support, love and prayers.

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Driving 101 - Click on Pictures to Enlarge

Tommy's teaching Mag's how to drive
Note who has on her crash helmet and seat belt
Dad's telling Tommy to SLOW DOWN!

When you enlarge this pic you can see a freight ship from the Tacoma Port below and the Tacoma Dome in the background
They are having a blast

Brother & Sister Bonding

Tommy & "Mag's" as he calls her in Mag's bed playing
See, we can get along just fine!
Pretending to go to bed.

This morning, Tommy asked if he could get Maggie up -- she was already awake. Then he asks if he can get in bed with her to play. They had a fun time for about 20 minutes. It was fun to watch and listen to them play together.

Tommy goes back in the morning to his chemo treatment. There are a total of five chemo meds that he's on. Three are given back to back of each other over the course of two full days and the other two are given back to back over the course of five full days.

The two short days have only one thing nice about them, they are short. The two day treatment is VERY hard and the last time made him VERY VERY VERY sick. Not only while he was on the chemo, but the following week of it he ended up back in the hospital needing his first blood transfusion.

Please keep those prayers going -- for Tommy to have an easier time for the next treatment whcih starts tomorrow. Tommy and I will be at the "Dr's House" aka hospital at 7:30 AM to start the process.