FREEDOM! (Hear George Michael singing?)

Our sweet, little princess got the green light to hit the road today. We're very relieved as she was beginning to get very bored. BORED is very bad with Eden. She likes to "find" things to do. She got so bored last night that she took out her boredom on our super-volunteer friend, Dave. Poor guy...
Yesterday, Daddy came to the hospital right from work. I hit the door running and grabbed Riley and a couple of pizzas and headed back to Children's for dinner and a movie. Rodger drove down for some family time and we all watched Shark Tales together. Daddy headed home for bed and Rodger headed out to do "eighteen year old" things (I do not want to know).
Mommy rolled in around nine and Riley and I should have headed out but Volunteer Dave stopped in to say Hi and Eden hijacked him. She literally held him hostage in the recliner in her room until midnight.
We all had an abosulte blast. We ate junk, laughed, played, acted just plain silly and Mommy discovered that she really could get used to being the Queen of Egypt being carried on a litter. Riley turned himself into a mummy and Eden just kept on taping Dave to the chair.
When we finally figured out how late it was, Riley and I said out goodbyes and headed out. Dave rode down in the elevator with us and he looked like he could have slept standing up. What a great guy to come in and help families in any way that they need.
Riley commented on the way home that he never knew being at the hospital could be so much fun.
We slept late (9 AM) and headed right back down. Aunt CeCe and Riley headed to her house work on getting the pool ready to open up soon.
Eden spent three days in CHildren's with mysterious pains in her ear and neck and fever. GUESS WHAT? She had a sinus infection. That's what her mom told them on Wednesday when she called the clinic. Antibiotics, regular meds and a shot everyday to boost her white blood cell count. WE COULD HAVE DONE ALL OF THAT AT HOME ANYWAY! I do not understand why parents' views of their child's health is undervalued. WHo knows them better then we do? A resident that has never seen them or a parent that is with them everyday? Ok, I'm climbing down off of my soapbox now. Sorry, but I needed to get that off of my chest.
Her counts were very low on Tuesday, on Thursday the counts were dangerously low. She got her transfusions and some of her counts came up, but the platelets dropped back down into the 40's again. We MUST very very careful with the princess, she will bruise easily. She could also get even sicker then the sinus infection if she is exposed to someone who is ill. Please visist responsibly.

Smoothing the bumps in the road

After Mommy and Riley headed out to check on Andy, get Mom's "spend-the-night-at-the-hospital" stuff, potty the dogs and spend a little time together, Eden's nurse, Angie, came in with a bag of platelets to infuse into Eden. Eden was drifting off into a good sleep and very comfy with me cuddled up on her bed. She started to clench her fists really hard (still sleeping), so I called for a nurse. I was worried about an adverse reaction to the platelets. Angie was there within a minute! She stopped the infusion and we asked Eden questions about why she was clenching her hands in that manner. She said that she couldn't feel her hands unless she dug her fingernails into the palms. Angie called for a doctor to come and see Eden, he was there in a New York minute. He decided to switch Eden to a new bag of platelets and have the first bag tested for problems. A new bag of platelets was ordered and we cuddled while we waited.

The platelets had to be ordered from Red Cross, so Angie started Eden's red blood cell transfusion. The red blood was ordered to go into Eden over four hours. Just after Angie attached the red blood cells to Eden she found out that Eden's platelets had just arrived at Children's. Oh well, c'est la vie! Red blood first, then platelets later. She'll be topped off like a new car in no time!

Eden was very tired all day. When your red blood cells are really low, you have no energy. She was on the bed the whole time I was there (except for potty trips). As the red blood cells were infused into her, I watched her begin to perk up. How amazing to watch her come back to her energetic little self again. We played Old Maid (not much fun with just two people) and then woke Daddy from his nap to play it with us, too.

She has discovered that she likes Subway kid's meals. She didn't want the hospital food, so Daddy picked up the food along with a hot chocolate for his princess on his way to visit her this afternoon. A kid's meal: turkey with cheese and NOTHING else on it, a cookie, a juice box and a toy. What more could a girl want? She ate all of the sandwich, part of a cookie and drank most of the juice. Not bad for a chick with a temperature of 103 degrees.

The fever was up and then up some more all day. She was up to 104.6 around 4 this afternoon, but the last I heard it had come down to about 100 or so. She is being giving Ceftaz and Clindamyacin antibiotics for any possible bacterial infection.

I left with Riley around 8 PM, Eden was still getting her red blood cells and Mommy was settling in for the night. Hopefully they will get some good rest tonight, I know I will. Aunt CeCe is covering the early morning, I will be in by 9 AM, Daddy will be in around 4 and Mommy will come down to spend the night again tomorrow. At least we are beginning to get a flow back in our logistics, it's been a rough ride the last few weeks.

Please keep praying for Eden and for all of her support team. You are all appreciated and loved more then you'll ever know!

A bump in the Road!

Eden’s temp and overall well being was questionable all day yesterday, so we watched her and unlike a pot she did in fact start to boil this morning about 4am. She woke with the nodes around her ear so sore that we couldn’t touch it and a bloody nose. Her Blood counts had dropped enough that it started to take a serious toll on her little body. We headed to the clinic at 8 and her temp was 101.4 (anything over 100.5 earns us a few days in the hospital because of the port there is an increased risk of infection and with low counts we just cant risk it) So antibiotics were started and blood and platelets were ordered and we were off to J5. (Added into the mix was Andy’s root canal, so Shelly and I traded off at the hospital a few times this morning while shuffling Riley around with us) once we got to J5 we begged the staff to allow us to run down to the lobby where all of the radio stations were hosting the Radiothon to cure Children’s Cancer and Eden had 3 interviews to do. She is a VIP (Very Important Princess) and we felt this was a wonderful cause. The interviews went very well outside of a few tears by me and Shelly when Riley was talking about what it’s like to be the big brother of a Cancer patient. Eden is currently getting her life saving transfusions and antibiotics to tackle any bacteria sneaking around in there. THANK YOU SO MUCH TO ALL OF YOU WHO CHOOSE TO GIVE BLOOD!!

Blood cultures were taken this morning and they will be watched for anything growing over the next 48 hours and after 24 hours of no fever and nothing growing in her cultures she will be allowed to go home. It helps so much that Eden loves to be at the hospital and all of the people who work with her.

Radiothon Station Information

Oops, I mentioned that Eden is doing a radiothon interview on Thursday, but forgot to mention that Riley is interviewing as well. He is going to talk about the sibling side of things and also about the Sibling Support program. We have no idea what Eden might say, so tune it for a good time.

The radiothon is being held on three local radio stations. The links to their websites and station information are as follows:

http://www.joy106.com (106.3 on the radio: Gospel format)

http://www.magic989.com (98.9 on the radio: Hip-Hop and R&B format)

http://www.power1075.com (107.5 on the radio: R&B and Classic Soul format)

Tune in Thursday from noon until 1 PM (in the Columbus radio station area) to hear our wonderful children speak out in support of Children's Hospital's Hematology/Oncology unit (J5)!

The radiothon runs from Thursday until Saturday

A really cool sidenote: Warren Stevens (98.9 from 3 PM to 7 PM) is a high school classmate of mine. We hadn't heard from each other since graduation and got connected again through the radiothon. There are many positives that come from a negative like cancer!

Thanks for checking on Eden.

Eden's Birthday at School!

On Monday, April 24th, Eden came to school after being in the hospital for a week. Her Kindergarten friends were so happy to see her! We celebrated with brownies (which happen to be Miss Diddle's favorite treat - a total coincidence!) and she of course got to wear a birthday crown all day and the kids sang their heart out to her. She wouldn't tell me her birthday wish because, of course, then it wouldn't come true! We loved having our princess back in school!

Club Libby Lu Pics

Not much to add to Lisa's update from earlier, although she did forget to mention that when Eden climbed off of Riley's bike pegs her knee was bleeding! It was a scrape, RILEY had NOTHING to do with the blood. Lisa did grab her heart and start hyper-ventilating, but overall handled it pretty well. A girl should get a ride home on her brother's bike pegs occasionally.

Labs today were ok. No transfusions were needed, which is very good. Eden did not like having her port accessed at all. She was nervous and then terrified. I personally think that she handled a new kind of pokie very well. I think each time will get easier for her. I hope it does, at least. I may need hearing aids after all that yelling!

Enjoy the birthday party at Club Libby Lu pictures. I'll add more later, I have to get some sleep as Eden will be here bright and early in the morning.

Sorry for the delay, but I really have been busy with these kids of ours. They are a full-time job and even more! It's a darn good thing I love them so much.

Philly here we come!

(as a side note, Shelly is working on getting an update of the party Sunday as she has all of the pics, but she has been pretty busy with Kid stuff) As for new things we know. Rourke and I will be taking Eden to children's hospital of Philadelphia on Wed May 3rd for a Meet and Greet/Consultation with the team of Doctors that run the trial study she will be starting in June. (iMiBG) Her appointment is only about 2 hours and then we are done until we go back for actual treatment Mid June so Rourk's Wonderful, amazing Aunt Linda and Uncle Jack have offered to fly us out there for the day in their 6 person plane. I can not stress enough as to the amount of love and kindness we have seen over the last two years, which includes Family, Friends, Strangers, Doctors, nurses and even Honda and EMC. To name all of the kind hearts we have encountered would be a weeks worth of work. Thank you all so much for the little and big things you do for our precious baby.

Eden continues to feel very well. She is eating so much and sleeping well and playing hard and doing her best to give me a stroke! Sunday I looked in the back yard where she was playing with Abby and alley to find her hanging over the swing by her belly upsidedown flying through the air. This is one day after finishing a weeks worth of chemo and only 5 days after having surgery to place a port in he chest!!!! Yesterday as Shelly, Rourke and I were standing in the drive way waiting to see Riley and Eden heading towards the house I found myself not able to breath when I saw Riley on his bike and Eden standing on the back pegs along for the ride cruising down the road. I am convinced she and Riley get much joy out of seeing how many times they can make Mom's heart stop in one day..............

PARTY of the Century

The King of Volunteers, Dave Bartholomew (in the blue shirt with Eden and her cake), arranged for Eden to have a very special birthday celebration. It was so special and planned so well that EDEN ADAMS was speechless! Now we all know that Eden always have something to say, so it was a priceless moment indeed. Our sincere thanks to Dave for putting together a once in a lifetime event for Eden’s 6th birthday.

Dave plans a lot of activities for the kids on J5, so he has some experience at making this kind of thing work well. He planned a surprise party for Eden, pizza and root beer floats, nurse face painting and an amazing scavenger hunt. Eden didn’t get settled down until 11 PM. Whew, those J5 people really know how to party!

Our most gracious pharmacy assistant, Jocelyn Patton, arranged with Kroger of New Albany to have a beautiful Princess cake donated so that we could have more then enough to share with every person on J5. Thanks to Jocelyn and to Kroger of New Albany for the awesome cake. It tasted great, looked wonderful and was a tremendous gift. Thank you! For those of you who do not know, Eden’s stepbrother, Rodger, is a cashier at Kroger, too.

Mommy and Aunt CeCe took care of the party decorations, with pink and white streamers everywhere. Nancy provided the coolest Princess Castle piñata ever made for the party. Dave got the plates and napkins and stuff, along with the root beer, ice cream, pizza and face painting supplies.

We had an awesome turn out in terms of guests for the party: most of the J5 patients and parents, nurses and PCA’s stopped by; Dr. Jason popped in; Tony, Bobbi and Roby; DJ, Stacey and Christian Gordon; Mindy, Chad and Ally McCollister; Jon and Jocelyn Patton; Aunt CeCe, Mommy, Daddy, Shelly, Riley and Rodger; Kailyn Baird and many others from all over the hospital.

Eden had a birthday that may never be topped. She had so many visitors and gifts that it was overwhelming for all of us. Our thanks to everyone who worked so hard and gave so much for this inpatient birthday to be so special.

Poppa Ron stopped by earlier in the day and Tasha McCoy (Children’s Foundation) came through when she got done with work for the day.

Mamu Joanne called, as did Stephanie Welches, Miss Diddle’s entire kindergarten class called and sang Happy Birthday and so many others that we cannot name them all here.

Eden was released from Children’s this morning. She is riding her bike, playing with anyone who will play with her and generally just glad to be home. The biggest problem that she deals with when she leaves the hospital for home is boredom. She is so used to having someone with her 24/7 at Children’s that it takes a while for her to adjust to being back home again.

Tomorrow is the big Club Libby Lu Princess party and then she is off to Mommy’s for a week. She will return to school on Monday, she has clinic and labs at noon on Tuesday, school on Wednesday, a radio interview at noon on Thursday and then clinic and labs at 10:30 on Friday.

She has a full schedule this week; in addition her counts will start dropping from the chemo so we will have to give her daily injections of Neupogen, which helps her white blood cells to increase quickly. We will have to be more careful of where Eden is and whom she is around when her counts drop, as she will be more susceptible to infection and fevers. She cannot be around anyone who is ill, so please visit responsibly!

Thank you so much for checking on Eden, for all the prayers and well wishes and all of the love!

HAPPY BIRTHDAY PRINCESS EDEN!

Eden had a wonderful night hanging out with Miss Diddle and then Momma Hope and then Micah. About 8:30 we settled in to watch the Corps Bride and eat a night time snack. She was wanting to hold out until 12 so it would be her Birthday but fell short by about 15 min. But at 12:02 here comes all of the nurses led by Micah to sing Happy Birthday to her. It was so very wonderful that I had to fight back tears. This morning she woke up singing happy birthday to herself which was very cute and received tons of birthday calls. Andy showed up with an arm full of goodies about 9:00 and the best was a huge balloon and when you flick it, it sings a loud Happy Birthday. So after we were dressed in Princess gear we headed down the hall to prance and play her balloon.. I have added a picture of her victory dance after beating Andy at air hockey.

Volunteer Dave has set up a SURPRISE party for Eden tonight at the Hospital before the Friday night activities. We will add more pics and tell you of all the fun tomorrow.

Thanks for checking in!

Eden and Codey St John

Today was a good day.

Eden had challenged Codey St John to an air hockey game and they got to go play today. For those of you who have not heard about Codey, he is six and has neuroblastoma, too. He's doing the same sort of treatment hat Eden did before, so we know what they've been going through. They are kind of like us, though and try to find the fun in it all, so we had a great time together.

Codey proceeded to whomp on Eden during air hockey, but Eden thumped back in a rousing game of Memory, so I think they're pretty evenly matched.

After all of the fun, Eden and Codey both needed lunch and naps. We headed back to Eden's room, but she didn't want to eat. Nothing she tried sounded good. I even tried a turkey wrap from the Food Court, but she wasn't interested. We gave up and I tried to get her to sleep, but she fought me tooth and nail. I took her glasses and hearing aids and turned off the tv. I shut out all of the lights and closed the blinds; still she fought it. Well, Dad found out about it and confined her to her room for the evening (after a visit to the 3rd floor playground).

She had run a low grade fever (less then 100 degress all day), so Dad didn't want her to push it too hard. He felt like it was in her best interest to be a little more sedate, so there she was, stuck in her room. I guess even a princess needs to be "Daddyed" every once in a while!

Thanks for checking on the Princess.

Hello from Eden's Kindergarten Class

Well, it is Thursday and the Kindergarten class has just not been the same without Eden this week. We sure are looking forward to her returning to school next week! When she does, we will be sure to take numerous photos to post about her happenings in Kindergarten. Until then, here are some pictures of Eden and some of her Kindergarten friends from last week. We have been learning about the African Rainforest and the mountain gorillas and working with the Columbus Zoo and a program called Partners in Conservation. We are gearing up for a big field trip to the zoo in May! As you can see from some of the photos, Miss Diddle has been SOOO happy about the nice weather! Thank goodness for recess!

Eden "Corn Pop" Adams

Our most sincere thanks to Dr. Jason for the box of Corn Pops! Eden has been desperate for corn pops cereal since she was admitted. Everyone promised to get her some and we all dropped the ball, except for Dr. Jason, our oncology fellow. He went out of his way to get her the corn pops that she "needed". That, folks, is true dedication to treating a "whole patient" not just the disease. Dr. Jason had to hunt Eden down to give her the cereal, as she was busy making salt art. She started to give him a hug, but mean ol Shelly said NO! Eden was covered with chalk from the salt art and Dr. Jason was wearing khakis. I didn't think he'd want little pink handprints to explain all day. Then again, he may have enjoyed telling the story!

Momma Hope's patient/friend, Jackie, has been to visit Eden a few times this week, but we had trouble connecting. Today as Eden, Mommy and I waited to get Eden's picture taken at the Hersey's KissMobile, Jackie happened by, so we got her pictures with Eden and the Kiss.

Eden had a pretty nice day, she played air hockey with Laura, our PCA for the day and then talked her into a game of cards. Thanks for the break, Laura.

Our nurse, Jill, had a darn easy day with Eden. SHe really had very little to do today for Eden. She spent some time looking at Eden's picture with the Kiss and telling her that she was cute, but that was the hardest part of her job (Eden- specific) all day.

Dr. Jason was just doing his job earlier and he got all kinds of grief for it later. Dr Jason came in to do a quick physical exam of Eden. Eden and I were cuddled in bed trying to get a nap in before the big TEA PARTY Slumber party with Aunt CeCe tonight. Eden begab to wiggle, then she started to jiggle and went into full on giggles. He really was just doing his job, now he's being blamed for a grouchy girl. I hope she pepped up when she saw CeCe. They'll have a terrific time tonight!

Oh, to sings the praises of the wonderful volunteers at Children's we had more then one try to come and keep Eden occupied and to let us get a break. The services that they provide to the families on J5 are just amazing. Thank you all for your dedicated work with these children.

Eden was playing quietly on her bed when she heard a knock, She looked around and saw RONALD MCDONALD was waiting to visit her! That was very cool.

Daddy and Eden joined Kids n Kamp for their weekly pizza party. What a neat service for the families that are stuck inside. Thanks, Kids n Kamp!

Daddy took Eden to the 3rd floor playground this evening. Her entourage included Ann Singer and Peggy from the New Abany schools who stopped to play on the playground with Eden.

There is much more, but I an too tired to type anymore. She has so much energy that she is wearing me out! They told us that she wouldn't feel as bad as before. I wasn't expecting her to seem quite so NORMAL.

And... A good night

I showed up at the hospital last night a little after 9pm and Miss Eden was working on making a picture from the Kit Nurse Mary brought her. They were just starting her Chemo which runs for about an hour total and she was STARVING!! (nobody ever feeds the poor baby) lol. Daddy had requested two box lunches but in her opinion they were taking way to long. They did however show up around 9:45 just as she was finishing her picture so we settled her in with two turkey sandwiches, two apples and two bags of pretzels and a sprite to watch Charlie and the Chocolate factory for the 3rd time this week. At 12 the movie was over she blew me a kiss, said good-night and rolled over and that was all she wrote. We didn't hear another peep from her until 9:00 this morning when Breakfast arrived. She had pancakes, sausage, hard boiled eggs, raisin toast and cereal for breakfast and then we did the bath thing and by then Shelly was there and ready to party. When I left them they were hanging out by the Hershey Kissmobile out in front of the hospital and enjoying the sunshine. I am sure Shelly will update more on their day later on, along with pictures.

Hope your day was wonderful!

A good day

I'm very sorry; I do not have a picture from today for you to see. I really have no excuse, as I had my camera with me all day at the hospital.

You see, what happened is pretty simple, we had a great day.

I arrived around 10 AM, Mommy headed off to work and Aunt CeCe and her friend, Nancy headed back to the office. Nancy promised Eden some sugar cookies soon. Aunt CeCe is having a slumber party with Eden Wednesday night at the hospital so maybe Nancy will bring the cookies for them to have at their tea party.

After everyone said their good-byes and I Love Yous, Eden finished up breakfast and headed into the bathtub. Now you wouldn't think that taking a bath is a big deal, would you? I was worried about getting the bandage on Eden's neck wet, so I asked for help to wash her hair. Guess what? They don't get to wash a lot of hair on J5. Apparently most of their kids are bald. Mindy had a wonderful time doing Eden's hair for me. I was just a little nervous, so I figured I could blame Mindy if there was too much wetness. Well, Mindy showed me how it's done, so we know what to do now. Do NOT wrap so much Saran Wrap around Eden's neck that she cannot tilt her head back to rinse her hair. That seems pretty simple, huh? I'll try it tomorrow. I think.

After bath time and getting dressed, we headed for the playroom to play air hockey. We joked around good-naturedly about who was going to beat whom. Eden swore she was going to beat me, but today I got her; thanks to Tasha and Elaine from the Children's Hospital Foundation. They popped in while we were playing so we took a break and never got back to the game. We'll have a rematch tomorrow. Tasha and Elaine brought Eden a kitty balloon and a PINK gorilla. How perfectly Eden-esque. The gorilla was sitting on the infusion pump on her IV tree all day. It got a nice tour of the hospital, because we made a break for freedom just after lunch!

No one got to fill out a menu for Eden yesterday, so she got a generic lunch. She got a pepperoni pizza with French fries. She tried to eat it, but she did not like the pizza and wanted me to go to the cafeteria for her. I said I would and headed to the nurses' station to let them know I would be gone for a few minutes. Our sweet friend, Mindy (today's personal care assistant for Eden) said I could take her with me if I wanted. Now I must say here that I have NEVER been allowed to take Eden off of J5 before. I asked if she was sure, as she kind of scared me. I'm the stepmom; I wouldn't want to get accused if kidnapping a princess! We stepmothers have gotten a bad RAP!

But, I digress...we went outside. We got sunshine. We had fun. We went to the cafeteria; there was nothing that she wanted to eat. We went back to J5, but Eden wanted to go to the 3rd floor playground. She was pretty tired, so I cut her a deal. If she would nap, I would make sure that she got to go to that cool playground (as long as the doctors said ok). We ate some chocolate pudding and we cuddled up for a nap. She slept very well. No snoring, not restless; she just slept.

She slept until Daddy got there around 3:45 PM. I gave dad the lowdown and turned to leave and ran into Poppa Ron at the door. He stayed and visited for a while, Daddy said. That's a good thing, Poppa Ron has been having a really hard time with all of this stuff, and he needed a good dose of fully rested Eden.

Nurse Mary (Eden's school nurse) stopped in for a visit with her daughter, Emily. Daddy said it was a great visit, too. He enjoyed getting to know Nurse Mary, as Lisa and I usually handle the school contact; he gets a little left out.

The Gordon Crew came to visit Eden this evening and brought Riley along, too. I was busy doing laundry and cleaning the house, so I let Riley go with them, as he wanted to go to the hospital. I will never discourage that, even if he didn't spend much time with Eden. Eden and Stacey hung out while Daddy and DJ did some guy-stuff or something.

So you see there was just no time for pictures today. I'm sorry that you don’t get to see how wonderful she looked today, but I sure am glad that I was able to!

Ported, Primed and Ready to Go

Miss Diddle and Mrs Zorn having dinner catered by Eden:

















So to leave off where Mom stopped, Eden has a change of heart and put on her glasses, hearing aids and sandals to join Riley for a rousing game of air hockey in the playroom. Riley was beating her, so she started complaining that he was cheating. Go figure, some things never change.
The good part was that even with the new port in her chest and with a sore neck, she was using both of her arms and really playing well. She just got beat and she never likes to get beat.

We had a volunteer join us for a while, her name is Ann Singer and not only does she volunteer, she is a medical student. Her goal is to become a pediatric oncologist. Ann has an wonderful talent for drawing with crayons. Make sure to see Ann's portrait of Eden that is taped to Eden's door, if you come to visit. Maybe I'll take a picture of it tomorrow and post it for you all to see. Thanks for visiting, Ann, she really enjoyed you and your awesome talent! Ann is in a photo with Eden, wearing a blue volunteer vest and you can see the mermaid princess picture in process.

While Ann was visiting, Miss Diddle and Mrs. Zorn came to see the Princess. Miss Diddle is Eden's kindergarten teacher (for those of you who don't know) and Mrs. Zorn is Eden's reading teacher. They are also among some of Princess Eden's most loyal subjects. They brought Eden a few gifts, which she had to earn by answering school-type questions. They had a very good time playing with Eden as you might see in tonights photos. Miss Diddle is the redhead and Mrs. Zorn is the brunette.

After all of those visitors, we had the privelege of a visit from Mindy and Ally McCollister along with Momma Hope. Riley, Ally and I went outside to the newly reburbished playground across for the Emergency Room to play. The kids has a great time playing together. I, however, had left my camera in Eden's room so I have no pictures. Hoepfully we can get them all together to play soon and get some good shots. Mindy and Momma Hope hung out with Eden and got her more food, a grilled cheese and french fries. She was just getting ready to start eating, when Riley, Ally and I returned to the room with two grilled cheese sandwishes for Eden. I guess great minds think alike. Eden ate most of two sandwiches, Riley ate the other and Ally just wanted ice cream. Sorry, Mindy, I just can't say no to that beautiful face!

So folks started to trickle out again and Eden began to "meltdown". She had a busy day. She was up at 4:30 AM or so, at the hospital around 6 AM, doing all of the hospitally things and starving in the process, she had surgery, she has visitors, she played air hockey, basketball, kitchen set, grocery shopper and then took a few rides on her favorite John Deere tractor. She deserved to be a little melted, I suppose.

Daddy came in as all the drama began to ramp up. Poor Dad. He had one whining, one crying, one talking and one sitting in her bed, looking around wondering what in the heck just happened: where did everyone go? Who was crying? Mommy is on the couch tonight. Lisa, be sure to ask for some eggcrate foam to combat that couches big lump. I wish Lisa a smooth easy sleep and that Eden sleeps like a princess without a pea under her mattress.

Thanks for checking up on Eden, she's princess with her own accessories now.

We have reached PORT!

Eden now has access in her chest for pokies and all the good and bad drugs. she was very hungry when they brought her back to the room so see ate and ate and is still eating. They did not get her into surgery until 11am and she didn't make it back up until 2pm. She is very grumpy and in a little pain, but trying to stay in good spirits. A friend of hers stopped by and they played some cards and colored for a bit. (thanks Kelly)

There was a mix up with the Chemo orders so we are hoping they are going to start it soon. I just spoke with Dr. Nick and he has a few concerns about her kidneys and liver as the Topotecan can be very hard on them so the idea is hydrate, hydrate, hydrate.... flush, flush,flush...... so we are hoping they are working on a way to get us a pump at home to run fluids.

More info tomorrow.

Thanks for checking in on us and keep praying.

Surgery Scheduled!

I just spoke with one of the interns and he said Surgery is scheduled for 9:20 this morning. I can tell you how happy I was to hear that cause I am not sure we could last in this room together much longer than that without food in her belly! 10 min ago I heard "Mom I am so hungry!!" my reply was "I am so sorry honey" and to that I got "Well sorry doesn't fill my tummy now does it?" 99.9 % of the time she is the most gracious, sweet, loving little girl but when she lets all of this get the best of her.......Well you get the picture.. They are here to put her IV in so I am off.. Will update soon.

PRAY and PRAY again!

Thanks

Second Time Around

After a joyous weekend of fun and frolicking, Eden and Mommy were scheduled to be at Children's this morning at 6 AM for admission to J5.
The game plan is to prep for surgery to have a port placed and then start chemo once she has recovered from surgery and is adequately hydrated.
Once they get settled in and have an idea of a surgery time, Mommy is supposed to call me and I'll make a quick update to the blog so that you'll know when to pray the hardest.
Please start praying now.
I'll give you updates as I get them. I plan to head down to the hospital later, so I'll take the camera and add a photo or ten later.

T.G.I.F

THANK GOD IT'S FRIDAY! No fevers in this house today except maybe spring fever. Eden and Riley played outside all day at Dad and Shelly's and then I picked them up and we headed for Grove City to meet CeCe and Joe for Dinner.. Eden made us go to Country Buffet.... YUCK!! But she loves not having to wait for her food. After that we headed to Hobby Lobby to look for Crafts to keep Eden busy while in having Chemo next week. Eden has the best CeCe in the whole wide world! Not only is she there to hold me up during rough times but she is always Eden's Rock! She makes her laugh when she is sick or sad, she has suffered through 100's of invisible Tea, Tea Parties. She has always been there whenever we needed her, Period! I just really feel the need to sing her praises right now. We love you CeCe!

We are hoping for an event free Easter weekend. We are taking the kids tomorrow for pictures before the dreaded falling out of the hair which Eden is handling like a champ. (as always) and Sunday Andy's Parents are coming up from Dayton for Church and dinner. They are such wonderful people to be so accommodating with our situation.

From all of us to all of you, have a wonderful Easter!

We HAD a plan, but Eden has a mind of her own!

That is what DR. Nick said to Lisa and I as we ran into him in the hallway today, "We HAD a PLAN!" Well, the plans have changed. We all tried to be good-natured about it, but it was disappointing. We were worried that this might delay Eden's chance of starting chemo on Monday, but we'll have to wait and see.

Eden decided to get a fever, which has delayed her surgery from Friday to (hopefully) Monday.

Nurse Mary called me from school today to tell me that Eden had a fever of 100.9 and needed to be picked up right away. So I headed to school to see what was up with our princess. While on the way to school I called our good friends at J5 to see what I should do with Miss Eden. Micah consulted with Robin, who said to bring her to Children's to be checked out.

When I arrived at school she was lying on the cot in the nurses office. She was wearing her adorable brand new pink, white and silver sequined outfit; a heavy green sweater and lying under TWO blankets. She looked miserable and was shivering. She asked for a drink, but no one had anything that sounded good to her. We loaded up and headed for the door.

Today was school picture day and they somehow managed to get her picture taken, even through all of the shivering and fever. Nurse Mary said that they took her to the area where they were taking pictures, waited for her turn and pulled off the blankets and sweater, she smiled beautifully, they covered her back up and whiisked her back to the office to call me. That is true understanding as far as I am concerned. We didn't get her fall pictures, as she forgot to turn in the paperwork. We wanted these quite badly as do so appreciate the efoort that was made to take care or Eden, as well as get the kindergarten pictures done. What a wonderful and devoted staff in the New Albany K-1 Building. We are blessed to have you all standing beside us on this journey.

Momma Hope saved my tushy today! Rodger and Riley needed to be picked up at school today at 3 PM. Rodger needed his shirt for work at 3:30 PM and Riley had therapy at 3:40 PM in Westerville. Momma Hope stepped right in and covered everything for me, so that I could get Eden where she needed to be without leaving the other children in a lurch. Rodger walked the few blocks to work and Momma Hope tokk Riley to therapy, where Dad met them after work.

Lisa (Mommy) met Eden and I at J5. We got Eden through an un-numbed pokie, two x-rays, another urine collection, blood draws, blood pressures, numerous temperature checks and frankly, I don't remember what else.

Justin Yopp (he's a doctor, but Eden refuses to believe that) one of her most treasured friends, stopped in to visit with Eden. They had some fun and socialized for a while. She tried to get him to magic tricks, she pulled a joke or two on him and mostly was very pleased to see him ad to flirt with him like crazy.

Micah and Robin and all of the nurses did everything that they could to help Eden feel better and to try to keep her on the surgery schedule. At one point, she spiked a fever off of the temp-a-dot and that put her over the top for surgery on Friday. The fever came right down with ibuprofen, but spiked back up at the drug wore off. To be safe Dr. Nick ordered Rosefin (sp?), a broad spectrum antibiotic and that went right into Eden's iv line.

We hung out until around four when Robin told us to get out. There was nothing more to be done by hanging out there. Mommy kissed Miss Eden and headed for home to see if she could find the bottom of the laundry hamper. I attempted to do the same, but was clearly reminded that I owed Eden a shopping trip.

We headed to Made 2B Friends at Easton. I needed to pay up on the deal that I cut her last week during a couple of bad pokie experiences. One deal was for Build-A-Bear outfits for her horse and bear. The second deal was for a doll from Made 2B Friends and an outfit for that doll.

Well, Daddy gave us a spending limit and we only exceeded it by the price of the charm bracelet set and the beauty shop accessories. I believe that was a successful trip, as I wanted the dolls and accessories as much as Eden did! I LOVE that store, I could have spent a lot more. I guess I'm a softer touch then I used to be. We had a very good time, but Eden's fever hit again before I could get her to the car. Picture this: me carrying Eden, my purse, the Doll and her stuff in a cool carrying box, talking to Micah at J5 while manuevering through foot traffic at the Easton Towne Center. Not pretty and not fun for Eden or for me.

Micah said that Eden's tests all came back ok, so to give her Tylenol (which I happened to have in my purse, only God knows why) and get her to rest, drink and eat. Um, I got the drinking and eating part handled, but the rest was much harder. When the fever drops she is impossible to keep down. She's a strong young lady.

So the plan NOW is for Eden to arrive at Admitting at 6 AM (yeah for Lisa's new job position!) for a direct admit to J5. After settling in there, they hope to get her into surgery to have her port placed and then start chemo soon after she recovers from surgery and they get her hydration recovered. I guess we will just see what the weekend brings!

Please keep praying and remember if anyone wants to know what to do to help: Build-A-Bear, Made 2B Friends and Club Libby Lu gift certificates are VERY welcome. She is easy to persuade to suffer through the not fun stuff with such wonderful incentives. I promise to buy my own Made 2B Friends with my own money, never fear!

Remember that there are contact links for Mom and Dad on Eden's website, if you'd like to contact them directly. Email will probably work best for both parents right now as they are gearing up for another wild ride on the Cancer Rollercoaster.

Fun with Eden

The picture above is from last week when Eden had her bone marrow aspirations done. We have reached the point (Eden and I) where we just want to have fun with all of this stuff that isn't very much fun at all.

The day that she had her bone marrows done, she had a bad experience with having an IV placed. She fought through it like a trooper, with Dad, Mom and I encourgaing for all we were worth. The more upset she gets, the harder it is for them to get the IV line placed within her vein. Out of desperation, I promised her a trip to Build-A-Bear to by a new outfit for her bear that Taylor and Rhonda made for her a while back. Well, that promise worked and she settled down and they got the line placed.

Yesterday, Eden went to have a MRV/MRI done and none of us (her grown-ups) thought to numb her arm for the contrast line that had to be placed. AHHH! Well, suffice it to say that Eden's mom did what she had to do and they got the contrast in her. Eden "did not cry one little tear" and was a big girl through the whole procedure. Eden called to tell me all about it and to make sure that we would be going shopping for her bear soon. She was so excited and I was so happy that I promised her a trip to "Made 2 Be Friends" which is right next to Build-A-Bear. At Made 2 Be Friends, you can make your own doll and the smaller versions have painted toenails!
Eden makes us all so proud with her graceful demeanor, her lovong nature and the fact that she never holds a grudge against any of the nurses who have to poke her. I'm not so sure that I could be so grown up! She is an amazing child.

Her tastes are growing up as well. She asks for everything, but she is no longer the sweet LITTLE girl that started fighting cancer. She will soon be six and she is ALL princess/diva/girl.

If anyone would like to help us continue to reward this amazing behavior, Club Libby Lu, Build-A-Bear and Made 2 Be Friends gift certificates would be most welcome! :-) Please do not take this as begging or being greedy. We have had many people ask what they could do to help. This is something that would make her very happy and help us to reward her for doing some of the things that are so difficult for her to do.

Today, Eden has school and dance class. Tomorrow she has surgery to place a medport to keep use for chemo and other treatments, so please pray hard for our princess.

Mommy and Shelly are two HAPPY CAMPERS!

No more dressing changes! Uh Huh! Woo Hoo! We're dancing and singing and just as happy as we can be!

Our perfect Princess will not be sporting a hard to accessorize Broviac catheter. Dr. Nick was able to confirm that she would not need to have a Broviac for her upcoming MIBG treatment, so Eden will have a medport installed on Friday instead.

Having a medport will allow Eden the freedom of real baths (not sponge baths), swimming, playing in the sprinklers and all kinds of fun things that she would be restricted from if she had a Broviac. We will not have to do weekly painful dressing changes, either. We are very thankful as she can keep the medport in for treatment for a long time.

Eden is a little apprehensive about the medport as she will have to have a poke through her skin each time that she needs to have it accessed for some kind of procedure. We reassured her that we would use the numbing cream, so that she wouldn't feel anything, but she'll have to feel it before she believes us. She doesn't mind new things, but pokies are not high on her list of things to do; I don't blame her for being nervous, but I'm sure (and so is Lisa) That Eden will adjust fine once she gets over the first use of the medport.

Dr. Nick has made contact with the facilites that do MIBG treatments. Eden will be going to CHOP in Philadelphia for her treatment, probably in June. She'll have to pop in for an intial evaluation between rounds of chemo here, but we have a plan. We're all very relieved to know where she'll go for this treatment. Now for the logistics...

Thank you all for your love and support of Eden and all of her family. It's been a rough couple of weeks and there are sure to be more to come. Thank goodness that there is so much good that happens to offset the bad! Please continue to pray for us all!

Spring Days

Eden had a good day yesterday. She is feeling good but I am noticing she is becoming a little Irritable which she has every right to be and this very well could be an effect of the Cancer or that she is running so hard during the day that she is just exhausted. The weather has been so wonderful here that she and Riley are playing very hard after school. After school today she will be making a trip to Children's for her MRI. They need to confirm they have a good place for her Line they are putting in on Friday. It should only take about 30 Min and then we are off Easter Shoe shopping with CeCe.

The Beat of her Heart

(Cane and Sophie)

Eden had her EKG/ECHO yesterday and the cardiologist (who by the way is the husband of nurse Mary at Eden's School) said everything looked good and that the Squeeze of her heart chambers would be considered "low normal"?? But he didn't see any problem with that.
She was late for school but still made it which is what counts. She is doing wonderful and I overheard her commenting to someone on Sunday that she may lose her hair again with this Chemo but she didn't seem upset about it. I feel very conflicted by her acceptance of all of this. On one hand I am happy that she isn't distraught by all that we told her last week but on the other I hate that its very obvious that this is what she considers normal. NO child should ever have to have an understanding of this life much less think its normal! Everyday I feel so lucky to be a part of her life! After school the kids hung out with Dad and Shelly and Mamu Hope and then we headed home to Mom's to play with Cane and Sophie. Riley had his B-Day night out with CeCe and they went shopping and he had a $$ to spend on gifts for himself and came back with one thing for him and one thing for Eden and one thing for Cane and Sophie. He is such a kind and loving boy. FYI, We have not heard anything yet as to where Eden will go for her MiBG treatment but we should hear soon.

Partied Out!

(Bathtime fun)
Eden’s pain in her leg seems better. We didn’t hear much about it over the weekend. Eden and Riley hung out with Dad and Shelly on Sat and everything was very calm. Sunday was Party Day. Everyone showed up at Dad’s around 3 on Sunday to celebrate Riley turning 12. It was wonderful to see Riley getting so much attention and everyone enjoyed the Cake he baked with his own two hands. YUMMMMY! Riley had an opportunity to play his Trumpet for everyone which we really loved! He is such a wonderful little boy. Eden of course got her share of attention as well and it was an all around wonderful afternoon. After that party they were whisked off to another party at Aunt CeCe’s house where Riley requested Spaghetti and pumpkin pie.

Today Eden is off this morning for her Ekg/Echo at Children’s and then off to school. This procedure causes her no discomfort and in fact always makes her giggle as they run the wand over her chest and belly. We are hoping to hear something today as to where we will be going for IMiBG treatments and we do know that Eden is having her Line placed on Friday the 14th and starting Chemo on Monday the 17th. Please keep Eden in your prayers.

Pain in the......... Leg??

Eden had Dance Class last night and as any princess would, floated around like she was on air. She then woke up around 1:30 this morning with pain in her leg and she does have a small lump in the groin area but we have seen this before and it was just inflamed lymph Nodes so we are watching it closely. We have already had our daily call from Nurse Mary to inform us that Eden made her almost daily trip down to see her. We believe most of it to be physiological and she just needs reassurance that she is ok but we never shrug off any pain that she has so we keep in close contact with the wonderful staff at her school. Riley came back from Camp on Wed and could not stop talking about how much fun he had. Wild Onions? Eating Ants? He is ALL boy! Wed was also his 12th Birthday and we didn't have much opportunity to celebrate so he is having two parties on Sunday to make up for it with family and soon will be making a trip with a few lucky friends to Game Works for a fun filled evening. Happy Birthday Riley, We love you!!