Where is Grover?

Eden has had a great couple of days. While some of her numbers are a bit lower right now (to be expected with her chemo) she has been exceptionally entertaining. She has slept well; however, her eating habits have surely changed. She does not have the voracious appetite anymore.

Her current treatment still includes the nightly pokes. With that, the dread of the "poke" is happily balanced with which band-aid she will wear after. The routine begins with selection of the band-aid. She has two major choices: My Little Pony and Sesame Street. While pouring through her choices before the poke, Eden is quite perplexed as to why there is no Grover band-aid in the Sesame Street Box. Despite this concern, there has been an overwhelming winner this week as she chose a Big Bird band-aid for the second night in a row. Our brave little girl has done well taking her pokes.

Thanks for your prayers!

Princess Day at the Clinic

Happy Wednesday - clinic day for Eden! We left for Iowa City at 7. Eden entertained us on the way up searching for ponds (she can spot a body of water from miles away.) Eden was all smiles when we arrived. She even recognized friends in the waiting room!

As soon as we were in a room, she asked for toys. And, oh my do they bring toys! Eden had her choice between a kitchen set, princess castle and trucks -needless to say, she was cooking up a storm within minutes. Eden makes some pretty mean coffee and tea. As a side note, I know I have mentioned before how child-centered the clinic is and it still amazes me - read on and you will soon understand the title today too. Eden had her port checked, chemo, and a general "check-up." Our nurses and doctor are phenomenal. They all address Eden and talk to her. They are gentle and remember what she does and says. In between their visits, we are able to roam into the hallway to look through and get some books as well as play with the toys in the room.

After the treatment, we head off to the procedure room for her weekly LP (lumbar puncture with chemo). Our child life specialist is awaiting us with, drum roll, a princess crown, ring and earrings. She also has a bucket of entertaining toys and Disney music playing in the background. Eden enjoyed watching her blow bubbles, while wearing her crown and ring, of course, as they got the room ready. She is such a brave little girl! Well, not to be outdone, her sweet nurse, Mary Lou, came in wearing her crown too, it was decidedly princess day. Not to be too lighthearted, this is a serious procedure, that is not without challenges and tears; but, sweet Eden held her precious ring the entire time as well as the rest of the hospital visit and the ride home. We usually cap of the clinic visit with an apple juice snack and a couple of graham crackers. Eden drank the apple juice right down and asked for seconds. After the clinic, we had one last stop to the pharmacy.

As I mentioned, her new ring never left her hand! She had a wonderful nap this afternoon. We also were able to pop outside for a stroller ride, such a treat for February!

Pokes vs acessing port????

We decided to go with the "pokes" of chemo in Eden's legs, as opposed to messing with using the port. The nurses told us the chances of infection increase with accessing the port, so we opted to put Eden through 2 pokes instead of risking a week in the hospital (2 of the 4 chemo treatments were done at the hospital, so we only had to give her 2 pokes at home). She takes the pokes extremely well and by Saturday morning she was asking for band aid Mom told her she only gets band aids when she gets a poke. She thought about it and then said "one poke." Gotta love all the character bandages. Unfortunately, this next week will be the same as last, so we'll have to give her 3 chemo shots at home (thanks for your help giving the pokes Diana!!)

Eden seems to continue to handle the treatments pretty well. Her appetite is nothing like it was - we used to have trouble keeping her tummy full, now we wonder if there's enough in there to keep her going! Her spirit continues to thrive, as she just loves playing with her kitchen, reading books, riding her Wonder-Horse, and we could go on and on about all the funny stuff she does. She just cracks us up with the stuff she remembers hearing someone say.

Round Two and a "Fun" Hospital Stay

Wednesday was the beginning of Round 2 of Eden's treatment. We are thankful that we were able to begin on that day as that allowed us to return to our regular Dr.'s clinic day (with whom we have become fairly attached). Starting out in the clinic, we had Eden's port assessed, labs drawn, lumbar puncture, met with Drs and then were admitted for IV therapy. This is routine for the chemo Eden will be receiving periodically throughout her treatment.

Our room was not ready when we arrived to the floor; so, Eden and I had the opportunity to go out for lunch. I almost felt like it was a normal "girls day out"; however, we were at the 1st floor cafeteria. (Hey, it was still a lunch date!) It was about 3:30 when we sat down to eat and Eden had not eaten since 6 am--she had done wonderfully well!!!!! It helps that this was a non-steroid week!

Arriving to the floor, Eden was full of smiles. She was excited when I sat her on the bed . . . her request was, "football on." Dad explained to her that they could probably find some basketball, but she was not buying it. This was the beginning of an entirely different trip to the hospital. During our prior two visits, Eden was content sitting in bed reading books or watching movies. Not this time! Being "healthy", she discovered the buttons on the bed--up, down, light on, light off. She also found a captive audience with anyone who walked near the room . . .she was laughing so hard that we had nurses coming in to see what the commotion was all about. She was still awake at 10 pm. as our favorite night nurse, Emily, had just come in to see her.

Thursday was a pretty great day. Eden had art class . . . finger painting. All the hand washing has worn off as none of the patients were interested in putting fingers in the paint. Sponge painting was the preferred method instead. Ha - aren't kids funny?

On Thursday Eden did get sick a little from this new round of chemo. We will be giving this drug at a different time of day to avoid the nausea. Please pray with us that the evening treatments will do the "trick."

Tape Can Fix It!

Eden’s new thing is “get the tape”. If something is broken, we get the scotch tape out to fix it. Most commonly, it’s a ripped page in a book; or like the other day, daddy ripped the receipt from the grocery store on accident. So, we HAD to get the tape out to fix it. With that being said, how do you suppose a 21 month old would understand why Nurse Megan, dressed in a blue protective top had to lay a blue protective napkin over her tummy to inject chemo into her port? I, being dad, ask the question, "why all the protective coverings?” Nurse Megan replies, “we don’t want the chemo to touch her skin, or it’ll burn her.” Oh!! That’s comforting. So then why is it okay to inject the stuff directly into her heart?!?!? I sure am glad those doctors are smarter than this ol’ river rat! Seems to me, if you shouldn’t get it on your skin, you ought not to be injecting it into your heart! Don’t drug-heads die from doing that??? I guess in this case, it IS saving my daughter's life.

Mom and Eden had a long, but good day yesterday. Other than early morning, the entire day was spent at the hospital. And yes, Eden got to see Nurse Ashley & Nurse Emily; so she thought that was alright! The girls are still at the hospital now, and should be released late morning or early afternoon. Yesterday though, Selena tells me Eden was her normal self, minus the increased appetite we’ve seen the last couple weeks (she’s now off the steroids). As of 10:00 pm last night, although she hadn’t napped all day, she was laughing and rolling around the hospital bed like she was at a slumber party. (God help me when those days roll around-somehow I can see myself being the waiter at a tea party, dressed in some crazy outfit, with a bunch of giggling munchkins making me the joke of the party – guess some things never change.)

As of now, Eden is in a different phase of treatment and receiving a different variety of drugs. As you might guess, we’re praying her body reacts well to them. Today we need to make a decision on whether to leave Eden’s port accessed so we can inject that skin burning chemo ourselves OR give her the dreaded pokes of chemo in the leg. (I think we’ll be hitting up some of our nurse friends from Washington.) I believe this skin burning chemo is only administered for 4 days; but, she’ll still be on other drugs that will part of our daily routine for probably the next month or two. If I am mistaken with what I am telling you, Selena will correct me later on (this too is part of our daily routine).

You know, we’ve learned the little things in life that used to be so terrible and ruin the day are really pretty minor when we are dealing with something like cancer in our child!! We’ve said it before and I’ll say it again, we truly appreciate all your support and prayers for us! We can’t do this alone.

Praise God!

We got wonderful news this morning! Eden has less than 1% bad cells left!!!! This does not change the "plan" regarding the next couple of years; however, we consider this a HUGE win in her daily battle! Thank you for your prayers - we truly count on you in the trenches with us.

So, we are up in Iowa City now. She had chemo today and will be admitted for tonight and tommorrow. This is NOT a reflection that Eden is doing poorly, merely just part of the protocol. However, they did start a different chemo today, so we would like to ask for prayer specifically pertaining to how her little body handles this new round. (ie - no icky sickies, please)

We appreciate your prayers and God's grace. We will keep you posted. . .

Hmmm. . . No News

Exactly as the title says, no news today. You may remember that we were hoping to get back the results back today about whether Eden is in remission, no such luck. Our appointment for Wednesday has been changed to accommodate this delay in results from the original 8, we prefer, to 1 . . . of course she cannot eat until after her appointment.


On the wonderful side, Eden had a glorious day! She is such a little delight and is blossoming. It is so fun for us to watch her emerge as her own little person. As her language evolves we get to know her better and get such beautiful insight as to how she views and understands the world. She had such a great day today filled with so many 'normal' moments.

Dad works where????

Eden had another great day today!! Although her hair continues to thin, her mind continues to grow! I am thankful that if she stays on the path she's currently on, she'll be smarter than her ol' man by the time she's in secund graed:) Tomorrow (Tuesday) we are expecting some test results back, and we're shooting for remission, but we need to be patient if she's not there yet. I recall how extremely excited we were on day 8 of treatment when we learned she'd went from 72% bad cells down to 3% - in just 8 days! Praise the Lord!

Another good story - did any of you know I have a different job? According to Eden, daddy works for "H". I have to back up a bit to bring you all up to speed. Eden has developed a love for "frogs". Frogs is our name for the kid cartoon, Letter Factory. On frogs, kids learn all about letters and the sounds they make. Most you have never paid this much attention, but the "N" on a DNR shirt looks very much like an "H". So if you ask Eden where daddy works, her reply is very simply put - "H."

Wednesday it's back to the clinic for some labs, chemo and an LP. Eden's developed a love for the nice people that take care of her on these days: Miss Donna (child life specialist) and Mary Lou (clinical nurse) - she speaks very highly of them often. It's really nice to see your child enjoy getting to see people like Miss Donna and Mary Lou!!!

Fish in the HOUSE!!

Today was a good day, we spent it hibernating inside to stay away from unnecessary germs. It was such a blessing to sit back and watch her move around on her own again - playing and just being normal. We haven't had to constantly hold her (although to be honest, her mom and I didn't really mind all the cuddling). Play time consisted of cooking food at her kitchen, coloring, and reading books.

Funny story for you all.

Selena picked up a Betta fish for Eden for Valentine's Day. As you might guess, the little girl was pleased! Since we haven't had a chance to get an actual fish bowl, we've currently got "fish" in a clear quart jar. We told Eden she needs to name "fish". She decided it's a "boy", we told her okay, but you really ought to name it. She didn't seem to think it was important. We offered some suggestions "Steve", "Bill", "Frank" (manly names right)......you could see the wheels turning as she considered what we were telling her, she got a grin on her face, and very plainly said "Edies fish". So that's it, we have a little fish in a quart jar named Edies Fish.

We're still praying for good news this Tuesday, as that is when we get back results regarding Minimal Residual Disease.

Thank you all so much for your thoughts and prayers - we truely mean it! We really believe that the prayers have kept Eden from experiencing the bad things you normally think of when you think of a child dealing with cancer. We'd greatly appreciate your continued support through prayer.

Our Valentine

Happy Valentine's Day! We received the best Valentine today as Eden spent much of the day playing . . . yes, just what we requested prayer for yesterday. She found joy playing with "Little People" and riding her "Wonder Horse." She has been telling us "horse nigh, nigh" since our initial hospital stay and today she told me "horse wake up!" Reading books was still important to her today but NO movies, so thankful for that.

Our home became musical today with the addition of Eva's piano! Eden enjoyed the outing to Eva's home (hooray for another outing with 'no pokes'). She was quite the supervisor as Kurt and friends moved the piano out of Eva's, onto the trailer and into our house. Eden kept her distance from a view on my lap; but, that did not stop her from keeping the guys company, chatting away to them. Tonight she showcased her musical abilities . . . we will be saving up for lessons!

We have already noticed a difference in her sleep today now that she is not taking the steroids. She sacked in until 8:30 this morning. Regarding her nap, she slept for an hour and a half. Her appetite is still healthy. Once again, soup was a mainstay on the menu- ha! We have noticed the side effect of leg weakness, common with her meds, as she has difficulty standing up and with stairs.

Our little Valentine was especially sweet. We thank God that he has given us such a precious little girl so we can begin to better understand His love for us.

Treatment Friday

Thanks for your prayers about today. We had a pretty good trip up to Iowa City this morning. As you may remember, one of my biggest concerns about today was that Eden was not able to eat breakfast in preparation for our trip. Well, she did great! Only a few request for soup. She had chemo in her spine, bone marrow and her routine labs. After waiting for a call from the Dr this afternoon her bone marrow showed cancer cells between 1-2%. Hoorrrrayyyy! We will not have the results from the bone marrow they took regarding remission until Tuesday. So, please keep praying. The test of her spinal fluid once again is normal. We also got news today that it was the last day for steroids for now. Hopefully, we will be able to spend some time out of the kitchen.

A thirty minute nap on the way home will tide Eden over until bedtime today. When we got home she was ready for some more soup! We spent the afternoon talking about the day and waiting for Dad to come home from work. The highlight of the day for both Eden and Dad.

Please pray that Eden will return to being a toddler . . . I just want her to show an interest in playing. Her interests now are limited to eating, reading books, & watching videos (in that order). I just want some normalacy in that area. Thanks for praying!

New Day, New 'Do

Well, we decided to take the day off from blogging yesterday. (Have to admit, some days there just isn't much left by the end to jot a few lines down. But, you have been so faithful in partnering with us, that we want to keep you informed.) Yesterday was a good day though. Eden got herself a "new 'do". We decided to go chic and short in anticipation (this suggestion came from nurse Ashley on the floor). The cutting of her curly red hair has been difficult . . . I think because it is a visual reminder that she is sick. She has begun to lose a lot of hair; but, because of the thickness, you would be unable to tell unless you notice the piles of hair around the house (I just can't throw it away). Eden's new 'do is still long enough for her to pick out a bow to style with, which, as you know, these choices carry the utmost importance in a toddler's world. It is nice that she has accessories, we can only imagine what the outfits she will pick out will look like :) So, the haircut turned out to be a positive experience and Eden proudly informs us "no pokes" along with "I got haircut".
Our cutie has only gained a pound(ish); however, her looks have changed. Her cheeks and tummy are much rounder due to the meds and she will likely lose all her curls, eyelashes and eyebrows. Please pray that her soft red curls return after treatment.

Tonight's dinner (yup - food again) was "ghetti"- thank goodness for the fundraiser carryout plates. We usually enjoy going to these events; but, the new "germ-free" approach has us inside, for at least the winter. We cannot say we mind too much. Eden is such a delight.

Please pray for our big day on Friday.

Strides

Thanks for praying for more energy . . . Eden had a good day and made great strides in walking. She still seems disinterested in playing, so that is still something we can all pray for. Her spirits continue to remain strong - each time she cracks a smile (which is often), we're very thankful for time spent with her!

Back to Eden's favorite subject - FOOD. Last night, she was requesting "getti", spaghetti that is. So this morning, I asked her what she wanted for breakfast....french toast? No she said. Oatmeal? No she said again. I said, then what do you want???? "Getti" she politely asked. So her lunch was gone by 7:30am. Tonight, her mom cooked her fish, at Eden's request. Mom baked 3 slabs of some sort of mild tasting white fish (no, not Skunk River carp), Eden ate 2 of the 3 pieces. Mom and I ate really good home-made bread and cupcakes (thanks Fultons). Maybe some day we'll stop talking about food.

Dancin' Queen

Friday night was the beginning of a great weekend as Kurt and I were able to go to Dance Marathon for a little bit . This is a truly amazing event. College students dance to benefit kids like Eden . . . no sitting or caffeine for 24 hours. We were able to visit with 3 of these students from Washington and all I can say is their parents should be really proud, all amazing women. Dance Marathon once again surpassed the $1 million mark. The Dance Marathon is not unique to the University of Iowa-- Iowa State also hosts a Dance Marathon in which this year Jillian participated in honor of Eden.

It was really hard to be away from Eden, even for the few hours, especially seeing all the other kids running around having a great time. (They encourage the families to attend.) We noticed another little curly red head, and I think we both saw an older Eden, which made us miss our little girl even more. While Eden did not get to attend in person this year, she definitely participated in the family room on Saturday. You can see her cutting a rug with Kurt during the televised Dance Marathon. (Hope you may have also been able to catch a glimpse on TV.)


Saturday started the day by Eden telling dad "no pokes"......and she was right!! Since the weather was unseasonably warm, we took advantage of it and hit the back streets for a long walk. It was great for all of us! The fresh air did us all some good as this was Eden's first time out of the house. After the walk, she took a 3.5 hour nap(a total anomaly)! Mom and dad even got a nap, which was wonderful.

For breakfast Sunday morning, Eden was requesting "bread" - which was the homemade wheat bread our neighbor, Eva, brought us. Eden loves Eva because Eva spoils her each time we walk down to visit. After the bread, Eden was requesting "meat" - which was the left over turkey burger from the night before. About an hour after breakfast was over, she decided she needed some soup. Have you noticed that everyday we are writing about food . . . it occupies a great portion of our day? That reminds me, a funny story about "the soup". We were reading books last night and the book "Spot Visits his Grandparents" has Spot eating cookies out of the cookie jar. I asked Eden if she liked cookies her response: "no, soup." Rochelle's soup is currently at the top of her list.

Please pray that Eden gains some energy . . . also, Friday is a big day for us: bone marrow, spinal and chemo. They will also be testing to see if she is in remission. So please pray for her healing.

Dance Marathon Day

Dance Marathon . . . tonight! Today was Eden's weekly trip to the clinic and we were able to see the annual Dance Marathon start to take shape. It really is amazing to see all the volunteers, especially the college students. Last year they raised over 1 million dollars . . . all of that stays in Iowa to help children like Eden. It is so humbling for us to see so many different people from all walks of life contribute to this event and care so much about the children and families on this path in life.

Eden's morning started off well and she once again was requesting soup for breakfast. Fortunately, she could eat before her clinic visit. (I am already dreading next week as we will have to leave the house without eating. That could be a long trip to Iowa City.) The ride to the clinic today was very quite . . . Eden just sat in her seat not saying a word (very unlike her). I think she has figured out that anytime we leave the house we are going to the hospital.

The clinic visit went well, Eden really likes to see familiar faces. They drew her labs .. . all counts were normal (for the treatment she is receiving) and then she had her chemo. I really enjoyed ride home in which Eden talked for most of it. She loves to go home.


Tonight, Kurt and I were able to pop up to the Dance Marathon . . . will surely have more to share tomorrow!

Because today was a chemo day, we sure would appreciate some prayers regarding her reaction to all her medications (really a continous prayer for us). Also, praise to God for how well Eden has done and all the time, energy and resources people have donated to the Dance Marathon.

Talk Soup

Chatting, laughing and eating soup dominated another good day- actually, a great day for Eden. She still isn't interested in walking around much, she'd rather be held. Her spirits are very good and she's talking like a 16 year old girl at a sleep over! It's hilarious and she just makes us laugh. Eden's day was filled with many, many laughs too along with a new food craving. She ate soup like they were going to quit making it . . . forever (thanks Rochelle)! She had 3 bowls while Beth was with her today, one at 4pm, and then ate some of the supper Julie brought us (thank you!!!!). So, we thought "okay, she's finally full." We brushed her teeth, did the nystatin, and sat down to a nice movie of Veggie Tales . . . and low and behold, she started asking for more soup!!! Holy cats, where's it all going???? About half way through Veggie Tales, she asked to go to bed, that was about 7:30 or so. We fed the squirrels again tonight, normally that's a morning chore. Dad offered to take her outside for a walk, but, she didn't want to go. Hmmmmmm.....she loves going outside. She must not feel quite right - uhhhhh, what do I expect?

Tomorrow is a clinic visit. Eden will get labs and chemo via her port, just a routine visit. We appreciate your prayers!

Thankful for These Days

Eden and I got up at 7:00 this morning, and worked together (literally arm & arm), cooking french toast! She instructed me to get out the frying pan, eggs, milk and toast (all bread is toast to her right now). She loves to help us while we cook (usually most of the cooking is done by mom, and Eden and dad are on clean up duty). 2 pieces of french toast for Eden, 3 for dad, and we were both satisfied. Next she took her medicines, which she does very well. The hardest part of the medicines is brushing her teeth after major meals followed by the nystatin treatment, which consists of swabbing her mouth with an okay-flavored yellow medicine. The nystatin is used to keep her mouth clean and free of any "nasties" growing. After breakfast and medicines, we move onto our next (and highly important) daily ritual - feeding the squirrels. The squirrels in our neighborhood are like a well-trained labrador retriever. They patiently await a little Red Head knocking on the glass door, standing next to a very tall, mostly balding man (guess who) holding 2 ears of corn (thanks Fulton family). This morning, Peter Cotton Tail paid us a visit and cleaned up scrap corn the squirrels left behind - this was very pleasing to Eden. She very plainly said "squirrels night-night.....up in the trees" (if no squirrels are eating at any particular time that she looks out, Eden assumes they're sleeping up in the trees). By 8:15 am, Eden's very good friend Beth came to watch her and dad went to work. The word is Eden kept Beth entertained up until mom got home to take over. We're very thankful that Eden had a good day.

We continue praying, right along with you all, for Eden and her little friends still up at the hospital, who are also fighting battles of their own. Thanks so much for all of your support and prayers!!! We are humbled by how you think of her throughout your days and are so very touched by how far her story has reached. With that, had to share an email we received from Paul Horak:

"Getting as close to heaven as I can while keeping my feet on the earth. This was taken at over 12,000 feet on the continental divide this past Friday. We were in the middle of nowhere and on top of God's country. Go Eden!"
Paul is wearing a purple bracelet that supporters have created inscribed with "Pray for Eden."

Thanks for lifting our little girl up to the most powerful healer, God!

Best Day Yet

This has been absolutely the best day since we began treatment. Eden has kept me laughing all day . . . regardless of the fact that she only had a 35 minute nap. I think this day was a revitalization for me. I will now admit that last week, although it went well, was somewhat depressing. Last week Eden had little-to-no energy and spent the majority of her time on the couch or sitting in the kitchen. I thought it was her chemo; but, her Drs over the weekend indicated it was the RSV. On that note, the steroids she is on will actually increase her energy. I am guessing I may regret my feelings about last week later. While Eden may not be running around, she is quite the conversationalist. There is rarely a quiet moment in the house. Hummmmm, maybe that is where all the energy is going . . .

Love you all

Home again!

Hooray! Eden was released today! We are home, settling in and readjusting again.

While Eden was inpatient, she got a BIG GIRL BED! We consider this a very special change from the crib. One of us was able to sleep in Eden's bed with her each night instead of crowding into the tiny metal crib. It is amazing how spacious a twin bed can suddenly feel! Another blessing was Eden's favorite nurse "Ashley" was on duty this morning. One look and Eden exclaimed, "Ashley nice!" Eden also remembered our social worker. . . while she may be tired, her little brain is definitely in overdrive!

Eden was in isolation the entire time we were there and we were "reminded" about how seriously we must take the immune precautions! Even a trip to the grocery store by one of us now requires a thorough shower and clothes laundering to ensure that we not bring any new "bug" into the house. Unfortunately, the doctors have even discouraged visitors at home.

As you pray please include:

• Protection for Eden's immune system
• Her friends on the floor
• Adjustment and enjoyment as we settle into a "solitary" winter