The Levetzow Family

Almost finished!

2011-05-05T22:02:00.004-05:00

Quick update. This past Wednesday, Eden completed the very last of her clinic visits for chemo! She is currently finishing her last round of steroids and by the end of next week she will have reached the very end of her treatment protocol.

Eden has been doing very well over the past several months (other than having to get tubes in her ears). Her hair has grown in red and curly again. She is definitely feeling better, as she seems to run nearly every chance she gets and she is looking forward to getting her port removed real soon.

Selena and I have been looking forward to this point for 2+ years, and now that we are here, we are experiencing mixed emotions. Excitement followed by fear and ultimately followed by being thankful that we are all together. We are absolutely thankful to have been so blessed in so many ways.

Thank you very much for all the thoughts and prayers for our family throughout this journey! We appreciate your support.

A Week at the Hospital

2010-10-31T21:14:00.013-05:00

2010 has been good to the Levetzow family - for the most part. The summer brought some changes in Eden's chemo regimen as her blood counts were often unfavorably low. She was often having weekly blood draws and we spent more time at home than intended, due to netropenia Eden spent 8 days in the hospital the beginning of August but since that stay she had returned to our healthy little girl. We have said to many, the month of September has been the best month since Eden began treatment in January of 2009. Eden has started attending preschool three mornings a week and she loves all of her friends. She loves being outside swinging and cruising the side streets of Washington on her Strider Bike.

We were reminded of the reality of Eden's health on the morning of October 26, Eden woke up with a fever. We were admitted to the hospital in Iowa City that morning. The nurses accessed her port and they ran blood cultures before starting antibiotics. Eden was lethargic most of the day. She only spoke a few words. She knew we were taking her to the hospital and the only question she asked was will they let me lay down? When we arrived on the floor she was greeted by our nurse and she said, "I don't want a pokey thing!"

The blood culture that was drawn when we arrived came back positive so she was started on a second antibiotic. The infection was controlled by the antibiotic as her fever subsided and only the first blood culture came back positive. The protocol for a positive culture is 7 days inpatient and 10 days of IV antibiotics following the first negative culture. The infection caused Eden hemoglobin to plummet and for the first time in over a year Eden received a blood transfusion. It is amazing how fast a little blood can perk a little one up.

Eden has not wanted to participate in many of the planned activities that the hospital and the Dance Marathon Volunteers offers. She has requested to go home more than normal. She is enjoying her life at home and being hooked up to an IV pole has interfered with her agenda. Today, Eden was able to be unhooked from her IV pole and she was able to ride her little bike through the halls of this amazing hospital. It was much better than the game of hide and seek we were playing with Eden hooked up to an IV pole. Today was good - Eden's smile can overshadow the location any day.

With Eden's best interest pretty much the only thing on our minds, the week has went by fairly quick. Although, we had intended on cheering on the Cyclones via Jack Trice we were thrilled with a win even in our absence. From our room, we could hear the crowd cheering the Hawks on to a great win - we were even cheering for the Hawks.

Eden's port has caused some discomfort and problems this visit. Tonight Eden's port would flush (allow fluids in) but would not draw (allow blood to be pulled back out). So after much despair and several attempts at getting the port to draw blood, the decision was made to re-access the port. This is upsetting to Eden. So we had the port removed, got a good soaking bath without having to protect an accessed port from the bath water, and finally had the port re-accessed. We all had our fingers crossed that the blood would draw - but it wouldn't. We were all extremely bummed and even had the nurses scratching their heads. It would flush really well, but wouldn't draw. So they tried several nursing tricks without success. So for the first time in 22 months it was necessary to administer TPN to dissolve a potential clot in her port. Finally around midnight Eden had a fully functioning port.

The plan is that by Tuesday, we should be getting discharged. We'll be very excited to get home and back into our routine. Eden misses her classmates and teachers - she has told several nurses about Mrs C & Mrs Warren. We are looking forward to some bike rides without limitations of halls, sleep without interruption and just life outside of the hospital.

We're sorry we haven't kept you all updated, but honestly, there's only so much to tell - since she's done so well.

Thanks to all of you out there who have expressed to us that you keep Eden in your prayers, and same to all of those out there that we don't even know about who are praying for her little body to heal.

Rough start to August

2010-08-07T21:44:00.002-05:00

Monday, August 2, 2010, started like most other days, however, by 2pm, Eden was admitted to the University of Iowa Hospital due to the dreaded ‘fever’. For the next four days Eden battled fevers coming and going. Each time the fever would go away, we hoped we were out of the woods, only to have it come back. Thursday morning at 9am was the last high temperature she’s had. After running several blood cultures, the team of Drs determined she had a viral infection.

The week has flown by, as all of our thoughts and concerns have been directed to Eden’s well being. Now that we can sit back and take a deep breath, we’re just thankful for how this event has turned out.

As I type this blog entry, she’s snuggled up next to mom in the bed, eating a bowl of vanilla ice cream and watching “Girl Power Veggie Tales”.

Even though it’s hard to say for sure what Eden’s been through this week, I do know that she’s been very well taken care of. As always, our team of nurses have been nothing short of Excellent. They’re sweet, caring, and attentive - everything you’d want in someone providing care to your child.

Twice today we talked the nurses and Dr’s into unhooking Eden from her “tree” so we could go outside to the play area. We took advantage of that, and had a great time playing with her and watching her run around and laugh again.

Eden’s white count and ANC have been slowly rising for the past couple of days, but the Dr’s won’t discharge us until her counts reach a certain level or she has been on IV meds for 7 days. So if all goes well, we’ll be going back to our normal life soon.

Thanks for all the thoughts and prayers for Eden!

Discontinued again

2010-07-30T19:49:00.003-05:00

Once again our routine clinic visit did not go as planned when Eden’s labs once again showed the signs of chemo. Her white blood count was .8 and her neutrophil count was 200. So for the second consecutive month all oral chemos have been discontinued and labs will be rechecked next week. We were very disappointed with the results, but find comfort in that she seems to feel okay, not great but we have witnessed many different demeanors. Eden will once again have a “poke” on Wednesday to determine if her oral chemo can be resumed. My understanding is they will start her at a dose less than the 125% she had been taking. In the meantime we have returned to the solitude of home. Someone asked me what this means and we don’t know . . . we are comforted by knowing God is in control.
Because we have been negligent in updating our blog I thought I would share some randomness
- Eden has a new pet tadpole named “Chicken” thanks to the Horak boys for a great gift
- Eden is terrified of tall buildings and parking ramps . . . they remind her of the clinic and she tells us the clinic is “NO FUN-NO FUN!”
- She loves riding her Strider bike, reading books and anything with her Dad
- She generally runs to greet Dad at the door, this week she has not felt so well and she remained in my lap when Kurt walked in she looked at me and said, “Mom your husband is home”
- She asked me “Mom, will you call the clinic and ask them if I have to come?” I picked up the phone some time later and she said, “Mom, are you calling the clinic?” We are looking forward to days when her thoughts are not consumed with pokes.
- The other evening Eden was getting after me about how I was doing something, I asked her why are you yelling at me Eden, she said “I am just a little crabby today.”
- Seems like she’s always asking if something is “nutritious”.

Thanks for keeping Eden in your prayers.

Comfort of Chemo

2010-07-27T06:02:00.003-05:00

On a recent trip to the clinic for chemo Eden asked me, “Mommy why are you sad?” I responded by telling her “I am sad because you have to get chemo.” In the sweetest voice from the back seat, “but Mommy I have to get chemo to get rid of my icky-sicky cancer.” God is so good . . . we have the most amazing little girl that helps us through the days when joy is overshadowed.
Last month Eden’s chemo was increased to 125% of the normal dosage for all her oral meds. With the increase in chemo we noticed more days of lethargic behaviors and more nausea and vomiting. The side effects bring mixed emotions as it is reminder of all the “normal” that cancer has taken away however we are thankful the treatment is successful in conquering the cancer cells.
This last month’s clinic visit did not go as we had planned . . . her blood counts plummeted. Her netrophil count was 340, well below the 1550 – 5500 normal range. For the first time since beginning maintenance last fall chemo was discontinued. The monthly clinic visit that has become our normal left us all with fear and many questions. Eden’s counts were rechecked in a week and indicated they had rebounded. Chemo was restarted at her normal dose of 125% and we all feel a comfort knowing she is receiving her daily chemo.
Thanks for checking in on us.

Finally Updating

2010-05-31T22:06:00.008-05:00

Once again our apologies for not updating. We understand so many have been checking in to stay aprised on our Eden and we have neglected writing for various reasons.

Time - now that we are comfortable taking Eden out we are busy, and loving it!

All is well - No news is good news!

Cancer stinks - cancer still plagues many aspects of our life and sometimes attempting to write shows all the ugliness of this disease.

Eden continues to do fabulous! She is a normal little 3 year old that enjoys reading books, playing with friends and doing just about anything outside. She keeps all of our days filled with laughter and often our nights as she not only talks in her sleep but laughs out loud as well. We love every minute we have with her!

On the medical side of life Eden continues to receive oral chemo daily with a second oral chemo on Wedensdays. We notice after the additional chemo on Wedensday she is lethargic on Thursdays, and thankfully these effects are generally reversed within a day or two. Eden still visits the clinic every 28 days for chemo via her port. As with all meds there are side effects . . . fortunately we seem to be able to minimize them with other meds. Eden's ANC has yet to be at the desired level. If her blood counts are high at her next clinic visit they will increase another chemo to 125% of the normal dose for her size. We are so thankful that God has continued to protect her throughout treatment.

Friends and the great outdoors:
We enjoyed spending alot of time outdoors this past weekend, working around the yard, visiting with friends, and enjoying nature's critters. A nest of cardinals were discovered in one of our small trees near the edge of our house, and inside the nest were 3 eggs. The next day, the 3 eggs hatched out so we had fun checking in on them often! We also discovered a nest of baby rabbits in our window well - very young rabbits. This was a total hit with Eden and the neighbor kids! Eden, was observed sliding down the slide without the safety net of someone catching her, both arms straight out to each side, one hand was wide open as if she were riding on a roller-coaster, the other hand possessed a little, fuzzy, most certainly terrified baby rabbit. We're happy to say that the baby rabbits all survived the snuggling that the kids gave them, however, the mother rabbit was not amused with the events that took place with her babies, so she removed them that night and placed them in a safer environment!

Increasing Chemo

2010-04-16T05:56:00.003-05:00

Another month has passed and we are one month closer to having our little girl off treatment and cancer free. As anticipated the increase in chemo brought the return of chemo side effects. We spent several days with a lethargic toddler that preferred doing nothing. We knew she did not feel good when she did not want to go outside. Our little red head lost about a third to half of her red curls she had accumulated. Since entering the maintenance phase of treatment her hair had returned thick and with beautiful curls, the additional chemo left us with handfuls of hair . . . everywhere. After much discussion we reluctantly agreed that it was time to cut her remaining hair and then it stopped falling out. So no hair cut and she is left with a very thin beautiful head of red curls. She remembers bandannas and is cooperative of wearing head cover when she is outside. Other side effects have been combated with meds and overall she has returned to our little girl. Thanks for continuing to pray for our little girl.

In Jesus Arms

2010-03-10T23:45:00.005-06:00

I walked into Eden’s room this morning and her first words were “Can we read the Bear Book?” Of course! Looking at the clock I knew we would be a few minutes late for our appointment but she had not asked for Dad (whom had to be at the office at 6am) or for breakfast (also not an option due to the procedures she was to endure) so I was all for letting her choose how to start the day . We finished reading Snow Friends, a great read, and she said to me, “I asked Jesus.” I wasn’t quite sure what she was referring to so she expanded “I asked Jesus to hold me in his arms.” In a conversation I had with Eden last week when we were discussing sleeping in her own bed, she expressed her concerns of being all by herself, I told her she was never alone and that she could just ask Jesus to hold her. Amazing that she did sleep in her bed all night and the echoing of my comment was a week later and on treatment day. It truly was a God thing!

As anticipated, we arrived to the clinic a couple minutes late. We were greeted by our favorite receptionist and one of the most amazing people I have met through this journey, Miss Donna. I knew as I walked through the door, it was going to be an okay day. We filled our time playing with My Little Ponies and reading books. Eden’s labs indicate her tolerance to her current level of chemo and as we expected the chemo was increased by 25%. Although we have been aware that the current dose of chemo is not achieving the desired blood counts to fight the cancer cells we are aprehensive of the new dosage. Eden received her monthly chemo and then her LP. The lumbar puncture went as well as could be expected. The sedation left Eden with no recollection of the procedure and I spent much of the afternoon laughing. The drugs left her unbalanced, slurred speech and confused. She was hysarical claiming "I don't want to go home, I want to stay at the hospital." She was unconsolable one moment and laughing the next. Unlike her last LP she has avioded all vomiting (a much better drive home).

Thanks for all the prayers . . . we were held in his arms.

Returning to Normalacy

2010-03-10T01:10:00.003-06:00

Once again we have neglected updating our CarePage and blog. Our apologies for those of you that have checked in on us.

Eden continues to amaze us with her health. She has remained healthy through the winter months and has exceeded our expectations in tolerating her chemo. Her monthly steroids have continued to be a challenge. It seems like it takes a couple days to affect her and fortunately leaves a day or so after her last dose. On the contrary we are usually able to incorporate at least one new food into her limited diet during steroid week and we have been able to utilize some additional days of steroids to boost her immune system. Regarding Eden’s diet – she has become one of the most particular eaters. I am sure part is her age but I still wonder what it would be like without chemo and steroids.

Last week was a big week at our house; we made a return to normalacy. We had chosen to keep Eden isolated or at least by our side through her intense treatment and through the current cold and flu season. The beginning of March was the start of many programs so we decided it was time . . . story hour, swimming lessons, & Sunday School filled our calendar. Although our hearts were broken throughout the week, it brought us so much joy to see Eden involved in normal childhood activities. I love seeing her smile!

Tomorrow/ today is clinic day! Eden and I will make our monthly trip to the clinic. It is so much harder every month. I think we spend every day attempting to reverse the effects that cancer has plagued upon our lives and then we are reminded that it is still and forever a part of our family. We are always honest with Eden so Kurt told her that she needed to go to the clinic tomorrow for chemo, “Is my cancer back” was her initial response. After a lengthy discussion of why she still needs chemo and I believe some promises of some treats Eden corrected her dad on the correct location of her port and I think she is ready for the day. I am still preparing! Tomorrow, Eden will be partially sedated and then restrained to have chemo injected into her spinal fluid. It is one of the most heartbreaking procedures to witness and the possible side effects leave us on her knees in prayer. God has protected Eden and I know he is in her hands.

2010

2010-01-24T22:56:00.004-06:00

January 14, 2010, marked one year of treatment, that has reshaped our lives. Selena and I agree that certain things in our lives that we used to think were important, really don't hold much weight anymore. However, I sure wish these "life lessons" didn't have to come at Eden's expense.

Eden continues to respond well to her treatment protocol. She visits the clinic every 28 days and receives chemo daily at home. We thank you for your prayers as Eden has remained amazingly healthy and at home. Her little head is now covered with red hair and everyday it gets curlier.

Thanks for checking in on us! Sorry it has been so long!

Concluding 2009

2009-12-31T05:41:00.005-06:00

We are about to conclude an amazing year. A year that we shared fears that we were unable to vocalize, relationships were defined, gained medical terminology we would have preferred to never know, financial strains, limited sleep, our faith was tested and yet God clearly showed his provisions. Our lives have been adjusted more so than any other time (marriage was such an easy transition and Eden was the most perfect baby). Today we are together and so extremely thankful for all of our blessings. We have been given our daughter, in Remission! A true answer to prayer.

We have/will celebrate Christmas with each of our families and yet we were able to be home on Christmas Day. I think the year has taught us the importance of home. We both clearly remember the day they told us Eden would be a frequent inpatient at the hospital. I immediately wanted the security of home as much as possible. We love being home. We were able to be in Our Church Christmas Eve and share our Christmas Gift with our church family, those that have spent much time on their knees praying for Little Eden. Christmas morning Eden has us in the kitchen a little after 6 to make our Baby Jesus birthday cake. She had even discovered, on her own, that the candles from the candle light service at church would be ideal for the cake. It just brought extreme Joy to us for her to even have the slightest understanding of the meaning of the day. Her own nativity set that she received this year has assisted with reiterating the Christmas Story (thank you Jensens it is her favorite gift.) Eden was heartbroken when we took the Christmas Tree down and Kurt explained to her that just because Christmas day is over we can still celebrated baby Jesus everyday. The lessons we learn from our children . . . I hope to put a little Christmas throughout all of 2010.

On the medical side of life Eden continues to tolerate her treatment extremely well. She started maintenance in September and to date she has yet to have the desired blood counts. Her ANC is normal, which defies what the chemo is to be accomplishing. We are anticipating the counts to drop in the next couple of weeks or the 100% dose of chemo that she is on will be increased. As much as we have enjoyed her feeling great we want to keep cancer out of her little body. The effects of 11 months of chemo has became evident as her lab work has showed numbers out of the desired range. The Drs will try to push the limits and will closely monitor her organ functions before decreasing chemo. We ask for your prayers!

Thanks for following us throughout the year you have carried us in so many ways! Happy New Year!

December 17th

2009-12-17T22:18:00.004-06:00

Yesterday, Selena took Eden up to Iowa City for her monthly clinic visit. It's just not as easy as it once was! Everything from getting her dressed in the morning, to the trip up, and once inside, according to Selena, the experience wasn't great. When Selena and Eden would go up for the weekly visits (last winter/spring), Eden actually looked forward to seeing her Dr's, nurses, and the ever friendly Child Life Services folks. Apparently Eden only said about 20 words the entire time they were there. Normally, Eden says 20 words just to tell us what she wants for breakfast! This particular trip to the clinic included an LP (lumbar puncture). Either the medications prior to the shot or the shot itself made her sick, so bless Selena's heart, she dealt with it as best she could. God was with them as some good friends of ours were across the street from where they stopped and lended a much needed hand. After the girls got home, and after a good long nap, Eden seemed much better. When she woke up, we asked her what she wanted to eat (remember the long nap)...........she said "lets go eat breakfast, and I want french toast". The kid thought it was breakfast time!! So, we made french toast, and she ate very well. We were pleased that it all stayed down too!

Eden's ear infection from a few weeks ago is gone, however, a nasty cough hasn't left yet. Thankfully, it only affects her at night, after she's been sleeping for several hours. It lasts about an hour, and then goes away. We're all looking forward to that cough taking a hike!

Earlier this week while i was at work, i was summoned up to the front desk. I figured it was someone from the general public coming in with a question on some environmental regulation. Nope, it was our friend and neighbor from just down the street, who brought in two wrapped Christmas presents for Eden! That night, I brought the gifts home and placed them beneath our tree. When Eden first seen them, of course, she wanted to open them. We told her, sorry, you have to wait til Christmas. Her response, "dad, we have our Christmas tree up, so it's Christmas". I told her "you're correct, it is the Christmas season, but Baby Jesus's birthday isn't until the 25th, so you have to wait". She was fine with the answer, so she just rearranged the packages back under the tree, and went on her way.

Selena and I are so very thankful for where we are right now. Looking back on this past year reminds us of how much our lives have changed. Obviously, no one wants to have cancer affect their life, however, it's certainly made us appreciate certain things more, and certain other things much less. Thank you for your prayers for our family!

December 6th

2009-12-06T21:39:00.005-06:00

We celebrated one of the most meaningful Thanksgiving Day’s with family. This year has certainly reminded us what is really important and that regardless of the trials life brings, we have so much to be thankful for. We enjoyed the long holiday weekend together, which was perfect . . . almost. Sleeplessness occurred at our home Saturday night into Sunday as Eden was battling an uncontrollable cough, which turned into some minor vomiting. Morning brought us comfort as were able to get medical consultation to keep Eden comfortable and we all enjoyed our last day home together. Sunday evening we were again faced with vomiting and tears that were consoled with Charlie Brown’s Thanksgiving (this has replaced Cinderella as her comfort movie). Monday we visited Dr Dave at our clinic and her right ear confirmed the ear infection we were speculating. We were thankful for the diagnosis . . . something easily taken care of with antibiotics. Through this we are thankful for the fact that Eden did not fever (automatic trip to the hospital) and for the Drs at Family Practice. The town of Washington is amazingly blessed with the most compassionate and gifted Drs that we trust.

Although, our nights are still accompanied by a coughing, little girl Eden has returned to her usual disposition during the day and we are enjoying all of her antics. Although we have not been able to spend our weekends in Ames this year cheering on the Cyclones, we have been able to watch a little football. Eden received a special football this weekend and was gearing up for a game of football with her helmet on. Eden had a stocking hat on (as her helmet), Dad was wearing something resembling a tiara, meanwhile, I was chasing her trying to get a med in her. She says to me “Mommy, football players don’t take meddy.” Well Eden, this one does!!

Please pray that we are able to keep Eden healthy and fever free, and that Eden remains in remission.

Thanksgiving

2009-11-24T21:32:00.007-06:00

With Thanksgiving right around the corner, Selena and I have many things to be thankful for (it wouldn't do justice by trying to name them all, nor do i want to bore you with a list). We greatly appreciate all the prayers and support we have received from our family and friends. Thank you!!

Selena and I are thankful that we're able to be taking Eden to a 'Disney on Ice' show over the Thanksgiving break. A few nights ago we told her about our plans - I don't think she could be any more excited!! (Selena and I CAN NOT wait to see her reaction to the show once we get there).

Eden's body has continued to react well to the chemo and steroids. Her hair has a red tint to it again, and it's almost long enough to clip bows in again.

Sorry this is so short and that our blogs are less frequent, but honestly, we just don't have a lot to report. Honestly, I am fine with 'boring' right now. Excitement in our lives is not necessary! We've had plenty 'excitement' since January 14th.

Again, I want to say that we are SO thankful for all the blessings in our lives. As always, we really appreciate your thoughts and prayers for the continued health of our little girl!

In closing I want to say: Be nice to others. Give thanks. Be safe. Go Coach Rhoads - we're proud of you for taking the Cyclones to a bowl game in your FIRST year as head coach!!

Rain - rain go away!

2009-11-16T22:20:00.008-06:00

Eden was feeling good over the weekend so we headed to the farm.

Eden & Rick - Eden's got her eyes on the inbound combine!

Here comes Annette in the combine!!!

The seat was comfortable, the ride was smooth, the view was great, and Annette showed Eden and I how to run a combine. Thanks Annette!!! We had a blast.

As you can see from the photos, Eden thoroughly enjoyed her trip to our friend's farm for a late afternoon trip aboard the combine.

This week, Selena and Eden head north to Iowa City for chemo at the clinic. Lately, she appears to be feeling good most of the time, and periodically, she appears worn down. Thankfully, the good times out weigh the not so good. She continues to get plenty of rest daily, is eating and drinking well, her hair continues to grow and overall seems to be a normal two and a half year old. We're so thankful and blessed for Eden and the progress she's made. Please continue to keep her in your thoughts and prayers, as she still has a long "row to hoe" (come on - she's a farm girl now).

This Week in Pictures

2009-10-30T20:16:00.004-05:00

Bubbles with Alysse and Taylor. We met Alysee during our
first hospital admission . . . needless to say Eden was not as
enjoyable during their first meeting. Thanks Alysee for being
so understanding!

Megan introducing Eden to Herky and Perky! We love
Megan regardless of the Herky influence!

Megan and Taylor learning some new moves from Eden.
We had the best night watching our little girl with a smile
all night. Thanks DM!

100 days to DM

2009-10-28T22:31:00.005-05:00

Tonight we broke our cardinal rule - mom, Eden and I attended a public event. It was a Dance Marathon event on campus at the University of Iowa. The event was to highlight that there is only 100 days to the upcoming main event for Dance Marathon (on Feb 5&6). We thought it would be okay to bring her out, since her counts have been pretty good, and we wanted to support the organization that has supported our family (and many others) so much and in so many ways since Jan 14th, 2009. Eden had an absolute blast tonight. The night started off with some crafts, then she met Herky, enjoyed the LOUD music in a ballroom atmosphere, watched the dancers dance, and got to spend some quality time with a few of our "regulars" from dance marathon. These same "regulars" have frequently spend time with Eden while we were on one of our long terms stays at the hospital.

One of the highlights tonight was that they introduced several of the cancer families that were present by having us walk across an elevated stage in front of all the dancers, and we were introduced. I wasn't sure how she'd do, being the absolute center of attention, with the big spot light blaring down on the stage. She did better than I hoped!!! Not only did she go up and onto the stage, but she was the very first of us onto the stage!! She blew kisses to the crowd, waved her arms, and did a little spin around dance - and the crowd of student dancers responded with loug cheers for her. Selena and I couldn't have been prouder of her. After our minute on stage was over, she rejoined a couple of our dancer friends (she actually asked that mom and dad stay back)!! So we did. Eden and two of our friends from dance marathon danced, and ran back and forth on the dance floor, pausing every 30 feet or so to lay down flat on the floor, then get up quickly to resume their run. (It reminded me of drills we did during 2-a-days to get into shape). Apparently it had that effect on all three of the girls, as they were all red cheeked and worn out. When it was time to go, Eden showed us her displeasure. She asked if she could "just stay".

After sleeping most of the way home, we changed her and gave her one of two oral chemos for the night. After the first chemo she took, we told her needed to take the pepcid too "to keep your tummy from hurting", we told her. She asked "does it hurt??" I said "well, we don't want it to hurt, so we're giving you this meddy". She said "does it have cancer in it?" I said "no, but you take lots of meddy's to kill the cancer". She looked me in the eyes, paused and said "yeah, we're killing cancer". I said "yep - and you're doing a great job". She rolled over and was asleep within minutes.

It's days like this one that make the stinky days seem like a distant memory. Thanks Dance Marathon!!!

We will be adding pictures so please check back . . . .

Is warm weather coming back??

2009-10-26T21:31:00.006-05:00

Eden's hair is coming in nicely. It's completely covered her head, and appears to be red again. Just this evening, we were talking about her hair coming back and that she'll soon be able to put bows in - her facial expressions lit up! Seeing her expressions like that can turn a bad day into a great day in just seconds. Just a couple minutes later, Eden was standing behind mom on the couch, flipping mom's ponytail across her (Eden's) face....you could just tell she's ready for her own hair to come back.

Eden has been doing very well lately. Her counts have been good enough that the Dr's have her on 100% chemo (meaning they don't have to scale the chemo back due to low counts). We're very thankful that she has not been sick thus far into the cold & flu season.

Eden was able to pick out a pumpkin over the weekend - it was funny, she picked out the scrawniest little pumpkin in the whole works - I decided she felt sorry for it. We were able to convince her to take one without quite so many deformities (so it at least resembles a pumpkin).

Over this past weekend, mom was going out to rake some leaves and Eden decided she needed to help - so off to the hardware store we went. Back home we went after we found just the right color and size (purple & pink slashes/small in size). We all ended up raking - mom and I that is. Eden's new rake ended up holding leaves down as the little girl waded through leaf piles picking her spot amongst the tarped leaves awaiting a ride to the street where the leaves are dumped for the fall pickup. Life is good!

Thanks for checking in on Eden. Please continue to pray for a healthy flu season.

Enjoying these days!!!!

2009-10-17T07:05:00.001-05:00

Eden is doing fabulous! Sometimes I feel that we are just anticipating some sort of illness or bump in the road but this is day 24 of her first maintenance cycle and we are enjoying our healthy little girl. The chemo Eden is receiving at home is well tolerated and thankfully she takes it with ease. Wednesdays are still marked on our calendar as Eden receives an additional chemo along with her nightly chemo; the combination seems to take some of the sparkle from her eyes for a couple days. Thankfully the sparkle always returns.

Eden’s gross motor skills are improving as she can now go down our 2 stairs without dropping to her knees to crawl down. Her running is now able to be differentiated from her walk. She is far from setting any records but it is so encouraging to see her develop some normal toddler skills or regain what she had lost. These delays are related to the Leukemia (causing the severe pain in her legs), Vincristine (one of the many chemos causing leg pain) and her body weight increasing by 20% in a few weeks. The change in her chemo regimen has allowed her hair to return her little head is now covered with about ½ inch of hair (color to be determined later . . . I am still praying for the same red curls).

Cancer has changed our life forever and it continues to affect the lives of so many that we love. Please keep those in your prayers. A big praise and the most exciting news is from my dear friend Trisha she is celebrating 4 years cancer free!

Maintenance

2009-09-27T22:11:00.002-05:00

This past Thursday Eden finally reached the ultimate goal of “Maintenance.” This has been the day we have anticipated since Eden was diagnosed over 8 months ago. For our family this means returning to some more normal social activities . . . maybe (we have been warned that cold and flu season is here.) This Maintenance phase is an 84 day cycle that will repeat itself until the spring of 2011. During these phases she will receive 1 lumbar puncture with chemo, chemo via her port once a month, the dreaded steroids, chemo nightly and a new chemo that she will take only once a week. Although she will be receiving oral chemo daily we will only be at the clinic once every 4 weeks. Of course any fevers will require a trip to hospital (hence our continued germ precautions).

The past several months Eden has spent much of her time administering chemo to her babies, giving lumbar punctures, giving us medicine, ordering CBC and the list goes on and on. At times we have enjoyed hearing her insight on the procedures or what she thinks happened to her hair and then there are the moments this role play brings us to tears as no child should have this as their childhood. The weeks without chemo have been excellent and we have noticed big changes . . . she is awakened in the night questioning why daddy took the M&Ms outside, instead of screaming “no pokes.” Note: M&Ms have only been a potty training motivator and not a new craving. Today she spent some time pretending to “dance like a princess”, holding her dress up with her right hand and me twirling her around with the other, such a normal activity. As I think about it I did dress her in a dress today without tears. I always dress her for the clinic in dresses as it seems to hide some of the tubes hanging from her port and the last few months I have had to reassure her that we were not going to the clinic.

We must thank all of you for your prayers regarding Thursday’s treatment. Eden had a Lumbar Puncture and it went so much better than the last three have. The combination of meds was ideal as she did not remember the procedure which is so much better than the past as we have had to hold a very alert girl in a fetal position. The nurses are very accommodating as they even gave her the seasonal flu shot while she was sedated. When she was back in my arms she asked me “mommy, why am I in this room?” So much easier to explain than why they gave you a poke in your back.

Shirt off His Back

2009-09-19T09:13:00.003-05:00

During the last 8 months we have witnessed the generosity of so many of you as you have helped us in our practical needs and carried us through in prayers. A story was shared with us about a friend who gave the “shirt off his back” to support the cause of fighting cancer. Last Saturday, Jack Trice Stadium was filled with “Beat Cancer” t-shirts. A good friend of ours was asked about his cardinal and gold “Beat Cancer” shirt. The women liked the shirt so much that our friend gave his shirt that he was wearing and asked her to go online to Beat Cancer Today and donate $10. We would have loved to have been at the tailgate to see him return shirtless! Thanks to all of you that supported Eden by wearing “Beat Cancer” shirts. Although the outcome of the game was disappointing (to ISU fans) the shirt sales was a success and with all the proceeds going to Cure Search - we feel it was a big win.

Tuesday brought us to our local hospital for Eden’s weekly labs, and the results were . . . disappointing. Once again, her neutrophil count had fallen, keeping her at a high risk for infections. The only encouragement from these results was that the lethargic and inconsolable behaviors were justified with low counts. After calls to Eden’s medical team in Iowa City, our request to have Eden seen was granted. Wednesday we met with Eden’s Drs to discuss our concerns. They were comfortable with her low counts and were confident that the low grade temperature, increased sleep and temperamental attitude were related to the chemo that she had received more than a month ago. We trust our Drs but were a bit more apprehensive as the toddler living at our house was not our little Eden. We recommended a few more tests and a couple were ordered. A call from our Dr that afternoon affirmed that her labs were okay and that Eden was still rebounding from her intense rounds of chemo. Thursday afternoon I received another call from Eden’s Oncologist. . . a bacterial infection had grown in Eden’s culture. An antibiotic was ordered and we will be combating this infection at home. We were relieved as we really believed there was something wrong with our little girl but we are her parents not her Drs.

This morning has started out quite “normal”. Later today we’ll be outside enjoying the wonderful weather.

Also, a HUGE thanks to all of those who participated in the Sabula Trail Ride last weekend and a special thanks to Don, Deb, Emily and Amy Warner. Your generosity is very much appreciated.

Glimpses of normalacy?

2009-09-13T08:50:00.005-05:00

Glimpses of normalacy? The last day Eden received chemo was August 25th. We have spent our time since that day waiting and anticipating her levels to rebound. Labs from last week indicated that she had rebounded. We celebrated by enjoying some normal activities, lunch with friends, play dates and her first trip to a public park. Although Eden was thrilled with the outings I think Kurt and I were even more excited to see Eden enjoying toddler activities. This week’s trip to Dr Dave’s hospital (our local hospital) resulted in disappointing results. Her labs that were normal last week were not only low but indicated she was neutropenic and therefore results in extra precautions to keep her in areas of minimal germs. A call to the hospital regarding these numbers leaves us with only more questions . . . So we ask for your prayers that her weekly labs on Tuesday will show our anticipated results. If her levels show that they are recovering she will start her next phase of maintenance on Wednesday. Maintenance will be a combination of chemo via her port, lumbar punctures (chemo via her spine), nightly chemo at home and 5 days a month of steroids.

We have so much to be thankful for over the last 8 months. Today I am thanking God for all our friends and family that have carried us through.

Love

Rebounding

2009-08-26T14:30:00.001-05:00

Sorry it's been so long since we've updated you all. The dreaded phase of Delayed Intensification is drawing to a close and we are just waiting for Eden’s labs to rebound. Eden struggled through the initial portion of this phase and ended up not having to be admitted for any unscheduled hospitalizations. Thank you Lord for allowing her to be so strong!!! Toward the very end of this past phase, we had to give her 5 pokes from home (in her mid thigh). She dreaded them each evening, but dealt with them pretty well. We were able to minimize the vomiting with her anti nausea med. We're praying that her blood counts don't drop farther in the coming days. So for now, she gets approximately two weeks without having to receive more chemo, this is to enable her counts to build prior to her entering the last phase, referred to as the Maintenance Phase.

Eden is still absent of hair on her head, so she spends considerable amounts of time combing her mom's hair and talking about the day that she can again wear bows in her own hair (it should start coming in for good in a week or so). Occassionally, she even combs my hair, but with the absence of hair on my cranium, she quickly looses interest. She's still the sweet little girl she was prior to Jan 14th (the day she was diagnosed). She makes us laugh everyday with the stuff she comes up with in conversation. It's amazing to us how her little mind works. She still loves pulling up a chair in the kitchen helping us make supper, and pulling us into her own kitchen making "cookies"! We're currently working on potty training, and it's going pretty good thus far. She is either liking the idea of getting out of diapers for good, or she's developing a love for the M&M's that she gets as a special treat for "going".

As always, we appreciate prayers for Eden's health as she continues treatment. We ask for prayers for Jenna, Eden's little friend who continues her own battle with cancer (as well as ANY child that has to go through their own battle with cancer!)

Home . . .

2009-08-13T20:43:00.001-05:00

Home. After a short overnight visit to the hospital we are enjoying the night at home. Eden received more chemo this morning and left the hospital with oral chemo as well as injections of chemo in hand. Along with oral chemo and meds she will have shots this week and next to complete the phase of delayed intensification. Thank you for all the prayers as we complete this phase of Eden’s treatment.
September 12th is National Childhood Cancer Awareness Day. To Iowa, that is the day of the in state rivalry between Iowa State & Iowa. In lieu of the "Beat Iowa" and "Beat State" t shirts that are generally seen across the state a group of parents have designed "Beat Cancer" shirts. The shirts say "Beat Cancer" on the front and "National Childhood Cancer Awareness Day" on the back and they are available in black and gold or cardinal and gold. Although we have a strong preference of colors we look forward to both Cyclones and Hawkeyes joining forces to raise awareness. You will also notice the website has UNI and Drake shirts available.
The shirts are available for $10 with all the proceeds going to CureSearch! The website established is beatcancertoday.org you can order directly from the website. If you are in the Washington or Des Moines area and would like to avoid shipping you can download the order form and mail to us along with a check payable to “Beat Cancer Today” we will be placing a large order and will arrange delivery. Please e mail us with any questions at kslevetzow@yahoo.com. Thanks for supporting CureSearch!

Long Day!!

2009-08-12T20:30:00.005-05:00

Selena has been the best mom ever today, and Eden was as strong and patient as any two year old could be expected to be. They arrived at the hospital this morning at 8:00am, hoping for an early visit into the procedure room. Unfortunately, for reasons currently unknown, the LP didn't end up getting done until around 2:45pm. We're not wanting to complain, because we are very blessed to be in the position to receive such great care, facilities and treatment, but it's rough on a little one knowing pokes are coming, not getting to eat breakfast, or lunch as it turns out and missing out on the normal noon time nap (by the way, Selena chose not to eat unitl Eden could join her). So as I sit in my office today working, and wondering, and not hearing anything (no reception in the hospital), I was about to go nuts not knowing what was happening!! Luckily, Selena and Eden found their way to a computer to send me an email update. From moms lap, Eden typed me a little note, and as my memory serves me, Eden typed out "afffitin". I translated that into "don't worry daddy, iam doing fine, i love you and i can't wait to see you tonight". {And I love you too Eden!!}

I arrived this afternoon at 6pm sharp. I walk into the room to see mom and Eden hanging out on the bed, Eden hooked up to her IV pole. Her face lite up into a smile, and she gives me a big DADDY!!! Of course, inside my heart sinks, as i am thrilled to see her doing well. After some supper, we were invited into the play room by the Dance Marathon volunteers - PLAYDOH night!!! Since we play with playdoh at home, this hit the spot. After that, we walked the halls some, mom went and got herself a much needed coffee, and Eden slid into her jammies. Her snack tonight included a cup of yogurt while watching Cinderella (that was sent directly per nurse Christine's request . . .she knew it was a rough day).

As for chemo, Eden got one orally tonight and two via her port. The nurse was gowned up like she was going 'Level A' into a building full of hazardous chemicals - and Eden drank the stuff and chased it with two drinks of water. Tonight we have to change her diaper every two hours, so the nurses can monitor her urine output.

With all we've been through, we honestly believe that we're so very blessed, and thankful for all we have and appreciative of your thoughts and prayers for Eden. God bless.

Treatment On

2009-08-11T23:34:00.002-05:00

Treatment is on for tomorrow (Wedensday). With her new Hello Kitty band aid in hand (thanks Aunt Becky) Eden visited her friends at our local lab and we are amazed by her awesome results. God has once again laid his healing hands on Eden and given her close to normal results. I think the bye week will allow her to enter the second phase of this round strong.

Tomorrow, Eden and I will be leaving the house before 7 to be admitted to “Emme’s Hospital” (she loves her nurses!) Eden will be receiving 2 different chemo drugs via her port, a new oral chemo and a spinal with chemo. Since we will be admitted our regular doctor will not necessarily be performing the spinal and she will be comforted by possibly unfamiliar nurses. Please pray that this procedure goes better than the last couple and that it may be done early in the morning as she will not be able to eat or drink until after the procedure. Note . . . the difficulties we have had with the last couple procedure are not impart to our wonderful doctors but more so Eden’s distress.

This will be our last scheduled admission. All of her treatment going forward will be done at home or in the clinic. This will be a bittersweet celebration as we love all the staff but we are so thankful for the next step.

It is getting late. . . . thanks for the prayers. Love levetzows

we're back - finally

2009-08-09T22:08:00.001-05:00

Once again our apologies for not updating this past week. Since our last update a week ago, with the exception of a decreased appetite (which was much needed), all is the same. We are enjoying every moment. Well almost, we are parenting a 2 year old and that has challenged both Kurt and I. We feel that her behavior is normal for her age and for that we are thankful.

This past Tuesday, Eden had labs checked locally to determine if she was able to have chemo on Wednesday. To my surprise her counts were too low to continue treatment. Her neutrophils needed to be 750 (the low end of normal is 1500) her counts were ~220. As excited as we are to complete delayed intensification, I am thankful for the unanswered prayers and that we were able to spend this week at home. God is so good!

This week we will be taking Eden to have labs checked on Tuesday to determine treatment for the week. Pending good results, Eden will be admitted Wednesday morning for her last inpatient chemo. She is scheduled for 2 different drugs via her port and also a spinal with chemo. She will be inpatient 24 hours and should be discharged Thursday. We will leave the hospital with shots of chemo as well as oral chemo to be continued at home. If we can keep Eden healthy and fever free for the next few weeks she will have beat the odds and successfully completed delayed intensification without an unplanned hospitalization.

As always, it’s late and we’re headed to get some much needed sleep!

Cinderella is back!!!!

2009-08-02T22:55:00.002-05:00

As we mentioned before, Eden has been having pretty typical experiences with this round of chemo. It is amazing how quickly “normal” changes in life. We spent a week without her usual chipper self on the go; but rather, she was lethargic and discontent, therefore, Cinderella reappeared. The movie has been hidden away since her last hospitalization and Eden’s eyes lit up when the princess made her entrance. Needless to say, we can imagine that the “Little People Toys” are happy for the vacation.

The week was filled with lots of food, pokes, tests, and more food. Food is essential during these steroids weeks and occupies the majority of our time. As soon as we stock up on a “craving” it changes. Here is just a little insight for all of you that have not witnessed the effects of steroids (it is okay to laugh we do).

Black beans: during black bean cravings she will eat an entire can. Do you know how many of those little legumes can fit into a can?
Milk: Eden’s dietician has recommended she remain on whole milk . . . several days she has consumed over 50 ounces of whole milk (50 grams of fat just in milk). Kurt is checking into a cow for her next pet.
Asparagus: She loves it. Wednesday was asparagus day and that is all she would eat (I did get her to take a bite of an apple under the condition she could have her bowl of asparagus back.) She ate just over a pound of asparagus before dinner!
Yougurt: Whole milk, plain, unsweetened yogurt. She has consumed a large container (24 oz) each of the past 2 days. We have been at the store the last two mornings before the sun was up just to feed her!
Noodles with butter and cottage cheese (not at the same time) have also filled her bowl many times. Just a few days ago, cottage cheese was her preference over ice cream (yes she is our daughter).

The steroids were discontinued several days ago however her appetite has yet to subside. We will be excited to spend our time doing something else besides eating, cooking or trips to the grocery store (3 trips to HyVee today).

The last couple days the bounce in her step has returned (she went 4 days without walking) and her color has improved. The head of hair that had returned was gone within a matter of days (I don’t remember it going that fast the first time). We are so thankful that she has made such improvements to end the week. We so needed her smile! This week she will have labs checked locally to determine if she can continue treatment on Wednesday. It’s late – heading to bed.

Thanks for checking in!!

Weekend spent inside

2009-07-26T22:41:00.002-05:00

Delayed Intensification has become what they told us to expect. Our little girl is masked by the side effects of chemo. We have spent the last couple days attempting to keep Eden content. She has once again showed little interest in some of her favorite activities and is content watching videos or eating. It is so disheartening as a parent to be unable to make your child smile and laugh . . . I think that is what I miss most. The steroids, although they bring many negative side effects, have provided Eden with some bursts of energy that show us a glimpse of our normally energetic daughter. Shortly after yesterdays dosage we made our only weekend outing and although it was brief we had a wonderful time. I think I will have Kurt share our adventure . . . as there are varying theories.

Okay, Dad here. My precious little daughter has at least some of my blood running through her veins - she loves frogs and fish. Recently, in preparation for an evening catfishing trip, I caught some bait, which included sunfish, crayfish (i.e. crawdads) and a single small bullfrog. Most of the bait was used at the river – all but the frog and a single small sunfish. Eden liked them too much to end up on a hook. So a few days later, after many visits to the fish tank in the garage to check on, feed, and aerate her new aquatic friends, we all 3 made the decision that frog needed to return to a friends’ pond where he could live with his frog friends. Preparation for this event actually worked out quite well, until we arrived at the pond to release “frog”, “frog” wasn’t in the quart sized yogurt container with the slit lid for air, as he was when we left the house. Opps!!! Where’d he go??? At this point, we’re not sure. I wanted to blame it on Eden for tipping it over, but we all know she didn’t do that. So last night, the doors on my vehicle were left open – just in case “frog” was hiding under the seat. For all Eden knows, “frog” is enjoying that pond and WILL be seen again in the future. As for the sunfish, today it received clean water, food, and the continued love that only a 2 yr old can give.

Thanks for praying for Eden.

Day 16

2009-07-23T22:23:00.002-05:00

Day 16 of D.I.

Today is day 16 of delayed intensification and Eden is doing okay. Her usually bubbly personality is combined with an uncharacteristical whine. The anti nausea medicine has once again been successful this week as we have combated the vomiting. Thus far she has not complained that her legs hurt or fallen (one of the side effects she experienced during the first round with Vincristine). The rash that had disappeared a couple weeks ago has returned at a much lesser magnitude. We are so thankful that she is doing amazing well, considering the amounts of chemo she is receiving.

Eden is extremely pale (although with my extreme lack of color most of this is inherited), her eyes have little sparkle with dark circles and she is starting to retain some fluid from the steroids. Her little head is covered with hair with the slightest red tint and signs of a curl (we pray that her beautiful red curls will return). The status of her hair is changing as it is starting to fall out again. Kurt and I have been prepared for this however, Eden has been asking for a bow in her hair. I must admit that although I love her little bald head I am looking forward to the return of her little red curls.

Thanks for following Eden's journey, and we appreciate the thoughts and prayers.

Daddy Day at the Clinic

2009-07-14T21:59:00.006-05:00

Sorry for not getting this posted last night 7/13 . . . snuggling with Eden took priority and I did not get our update posted.

Today Eden was scheduled at the clinic for PEG shots. This was not her normal clinic day and was just an interim visit before her regular clinic visit on Wednesday. Eden and I generally make the journey to the clinic a “girl’s day” but after multiple pokes last week (I think 5 or 6) I needed Kurt to go with us. There is only so many times and ways you can tell her that it going to be okay. Needless to say Kurt is exactly what we all needed today.

Always keeping me laughing . . .We were sitting at a stoplight just a mile from the clinic and Eden, knowing we were getting closer to seeing her friends, and may have been getting a bit impatient said “Go Daddy”. Kurt was accelerating before he realized that the car in front us was not going and the light was still red. Kurt’s response was “give me a break, she knows the lights” - which she does. Fortunately we are able to laugh as Kurt’s perfect driving record was still intact. I think I still would have been laughing had Kurt had to explain to the individual in the car in front of us that his two year old daughter had told him to go . . . and he listened.

Eden arrived to the clinic with a little extra spunk, she was like a kindergartner at school, introducing Dad to all her friends and showing him how good she is with vitals. She did fabulous! The 2 large pokes went as well as could be expected. Thanks to Nurse Sarah for having everything ready for us when we arrived to the treatment room Eden did not have much time to get too upset. I do believe that she was glad to not have her port accessed . . . not sure why that has become such a terrifying experience for her.

We completed our trip to Iowa City with a drive to the river front to “check the river”. Eden is truly Daddy’s Girl and her love for water solidifies it. She so wanted to get into the Iowa River and splash around.

Eden is successfully completing the first week of steroids and thus far we have had not traumatic side effects – Thanks for the prayers on this. Wednesday will be another day at the clinic. Every day is another day closer to the completion of D.I. Thanks for your prayers and support in so many ways.

July 9th update

2009-07-09T22:53:00.004-05:00

The phase we’ve been talking about over the past couple weeks, delayed intensification, started on Wednesday (of this week). At the clinic on Wednesday, Eden received two different drugs through her port and an LP. One of the chemo drugs she got via her port was red in color, which turned her urine pink for about a day. She doesn't seem to enjoy the clinic as well as she once did. When Selena asked her if she wanted to go see fer friends at the clinic (nurses Mary Lou, Carolyn & Sarah) she commented "come to my house to play."

It is not hard to tell that by looking into Eden’s eyes that fatigue is already setting in. She looks like she's wiped out. Yesterday she took a 5 hour nap, 2 hours is her normal. With that being said, she still shows us that she’s capable of exerting a good deal of effort to keep her herd of animals on the move around the living room!

We're thankful for the different chemotherapy drugs to kill the cancerous cells, but we're also thankful for drugs like Zofran. It is given to Eden every 4 hrs for 24-48 hrs after chemo to combat the side affects of the nausea and vomiting. We’re happy to report that thus far, it’s appeared to work.

Thank you for your continued prayers for our precious little girl!! The Good Lord has been very good to us, and we've been thankful for the good days we've had thus far through our battle with Pre-B Lyphoblastic Leukemia.

"I made mommy laugh"

2009-07-05T23:14:00.004-05:00

It is no secret that I am not the jokester in our marriage. Kurt is definitely the humor and the social one. However, we’re finding out that Eden has a funny bone too. Just the other day we were reading a book about a dinosaur going to school I asked her, “Are you going to go to school someday” her response “No, I stay home.” I laughed and she said in a very proud voice . . . “I made mommy laugh.” Tonight as we were playing with some friends’ kittens she asked “Can I pull their tail?” She is her father’s daughter . . . but at least she asked. She is always keeping us laughing. Just another gift God has given us to get us through . . . God is good!

Eden is and has been doing well. We are confident that she will go through this next round strong and without any complications. Tomorrow I will be taking her to the doctor for a rash that she has had for several weeks. We have been watching it and have been told it is likely a viral rash but I would like to ensure she should be starting such an intense round of chemo when her little body is covered in a rash. We trust our family doctors and will be comfortable and confident in their recommendation. Tuesday we will visit the hospital for labs to verify that she is ready to start delayed intensification. Wednesday, pending good lab results on Tuesday, we will begin delayed intensification. I ask that you pray for us all, as Eden is scheduled for a lumbar puncture and this will also be the return of steroids (yes, we're stocking up on cottage cheese and avocados). Steroids were the drug that affected Eden so much earlier in her treatment - she would exclusively eat, read and watch movies. We will be preparing to invoke all our creativity to keep Eden busy and off the couch.

enjoyed the week

2009-06-26T23:14:00.002-05:00

Jenna Update from the Waters Family . . . "Jenna's journey has taken a different turn. As plans sometime change, her plan is to now have a liver transplant. We will be traveling to Omaha for the transplant but we still don't know when. Please keep little Jenna in your prayers and your hearts. We also pray that there is a living donor match for her to receive part of their liver."

Please continue to uphold Jenna and her family in your prayers.

Eden Update. This past Wednesday was the last treatment day of chemo in this round (Interim Maintenance). Next up is the inevitable Delayed Intensification (DI). DI will include resuming steroids, 2 days of intrathecal chemo, PEG shots, weeks of shots at home, one scheduled hospitalization for chemo and more chemo nightly at home. This round will combine drugs utilized in round 1 and 2 to be the most intense (hence the name) portion of Eden’s treatment. With the increase and combination of drugs we will need to return to the solidarity of home to minimize the germ risks. It is so hard to comprehend that our little girl who seems so healthy will have to endure so much to be cured.

The last month has been wonderful. Eden has had minimal side effect and besides her little head, with only fine little hairs returning, she is a normal little girl. We have enjoyed a few normal activities, as the last couple weeks I have enjoyed lunch dates with Eden while at the clinic for chemo. Who would have guessed that a trip to the hospital diner could be classified as a lunch date (small pleasures!) I think the most exciting part of this round is that we have felt comfortable with Eden playing with friends. It is wonderful to see her interact with children her own age . . . something so normal but I will never take time with friends for granted because of Eden and cancer.

Prayers for Jenna

2009-06-21T21:14:00.003-05:00

Today we are once again asking for prayers for our sweet little friend, Jenna Waters. Four year old, Jenna was diagnosed with Hepatoblastoma Stage IV cancer on January 16. Tomorrow she will be having surgery to remove the remaining portion of the tumor on her liver that remains after several rounds of chemo. Her parents posted a list of prayer request and I want to share that with all of you that are not in the Washington area so that you may pray specifically for their needs.

-Her surgeons are happy, healthy, rested, knowledgeable and that God guides their hands gently for Jenna.
-That the 1/4 of the liver they are leaving is healthy and cancer free. They will then be able to continue with the surgery
-Portal vein is working as it should be by pumping adequate blood supply to Jenna's liver. They will then not need to mess with fixing it.
-They can get all of the tumor
-She will comfortable during surgery
-Jenna is as comfortable as she can be after surgery and for her to have a speedy recovery

-Give us peace that that the surgery will go smooth

Here is a picture of Eden and Jenna at relay for Life last weekend.

Thanks for praying for Jenna!

Our Week

2009-06-15T23:05:00.003-05:00

We apologize to all our faithful readers for not updating recently. The nice weather has left us all exhausted at the end of each day and just the thought of carrying on a intelligent conversation with someone is scary, let alone to publish something on the internet! And yes I did mean to use the word “publish” we are always amazed at how many people are keeping up with Eden. Then I remember why I am sitting in bed typing and that is to share our mountain that God has put in front of us. So here we go . . .

Eden had good lab results last Thursday. Some of her counts had only dropped a couple of points I was anticipating borderline results regarding chemo on Friday. She met the criteria and we visited the clinic on Friday for chemo via her port and spine. To be transparent I would say this was not our best clinic visit. The nurses were great as always but Eden is really struggling with the process of having her port accessed. Before leaving for the clinic Kurt’s job is to apply Emla cream (numbing cream) to her port. This has been their little routine however, the last couple times it has became an entire family event as it has taken both Kurt and I to hold her down just to apply the cream and get it covered. At the clinic they remove the cream to access her port, this takes both the nurse and I and unfortunately both Mary Lou and Carolynn have been kicked by her little feet. Her scheduled lumbar puncture has once again left me with a feeling of helplessness. I knelt looking at her inconsolable face through the entire procedure and that was after I requested additional drugs. Please pray that this procedure goes better as we will have two more in the next month and a half. Also pray that her routine port access returns to a level of comfort for her.

Relay for Life, always an amazing event! This day just reiterates for us why we are in Washington. Where else could you find such a close knit community all coming together in our Central Park to raise money to find a cure for cancer? Thank you to the planning committee for chairing a successful event. The unbelievable lab results from Thursday allowed us to take Eden to the event. She enjoyed every aspect of the event but was most excited to see her friends that we have kept her isolated from for the last several months. This was a break out of isolation event and a farewell as she is scheduled to begin her delayed intensification in two to three weeks. We are so thankful that God’s perfect timing in Eden’s treatment allowed us to take part. We will post pictures in the next couple of days.

This is a bye week for chemo we are so thankful for these weeks. We have really cherished the past few weeks, as we’ve been able to share so many good times with her. She has had a smile on her face nonstop and we just pray that it continues!!

Thanks for praying for our little E.

Thursday

2009-06-04T22:04:00.005-05:00

Bridget, one of Selena's co-work's daughter, watched Eden today. I am not sure about Bridget, but Eden crashed hard tonight and is sleeping like a worn out 2 yr old. Evidence of sidewalk chalk decorating the driveway and white sand on the porch indicates that the girls had a good time today. Eden appears to be feeling well, even after the additional chemo she received this week, so we're very thankful for that.

June 13th will bring an event to town that we've been apart of for years, but now it hits a little closer to home - Relay for Life. Karen VanOsdol's "WE Team" is doing a fun fund raiser by "flocking". Family's that make up our team take flocks of plastic pink flamingos around and stake them in peoples yard for 24 hrs in hopes that the home owners will donate a little something to the cause. Anyways, tonight we flocked two of our friend's yards, and Eden had a ball helping! Her job was to take mom the metal wires to hold up the "birds", meanwhile, good old dad was instructed to "hold my bowl of Life cereal". Dad says "can you say please"? Eden looks at me and says "please daddy". "Sure" I say. (it was a decent gig for me!)

Often times I wonder how Eden really feels. I say this because so much of the time she appears to be a normal kid, then occasionally she shows stints of not feeling good. She's obviously one little fighter. I just pray that her mom and I and her Dr's do the best job we can to give her the best chance possible to beat this crazy thing we call cancer.

Back to reality

2009-06-02T22:00:00.002-05:00

Last week was the first week since January that Eden has not had a “poke.” What a great week that was . . . now back to our reality. Eden had her weekly labs drawn today to determine if she is able to have treatment tomorrow and once again we are amazed with her results. Some of her counts have tumbled to levels half of where they were 10 days ago but she is still eligible for treatment. We are so thankful that she entered this round strong and that she is tolerating the chemo so well. God is Good!

One funny story . . . yesterday Eden had asked me if she could watch her Go Fish video and I had told her “no” (we let her watch very little TV). She didn’t cry or argue but her response “I ask Daddy.” I really didn’t think that I would hear that till she was negotiating her social calendar. She certainly keeps us laughing all the time.

The Drs will once again be increasing her chemo tomorrow, so please pray for a good day and that side effects are nonexistent, or at least bearable.

End of May

2009-05-31T22:29:00.006-05:00

In an hour and a half, the month of May will officially be over for 2009! That basically means Eden is 4 months closer to being done with treatment, and has about 23 months left. The roughest 40 days of treatment is just around the corner, but Selena and I know Eden will plow through it and be that much closer to being completely "healed".

This weekend has been a good one, as always, we spent a good deal of time outdoors. Eden was pleased when she got her first sandbox, which she LOVES! Tonight, as we walked down the street to visit our our good friend and neighbor Eva, we stopped off to check on the famous cat in the tree. After the three of us stood staring up into the tree calling "kitty kitty kitty" with no response, we decided the cat was either hiding somewhere up in the tree, on the ground getting a much needed drink, or in cat heaven. Eden didn't really seem to care where the cat was.....she was more interested in getting down to see Eva.

Tonight, mom crawled into bed with Eden to help her get to sleep, stayed for about 15 minutes, and got up hoping the little girl would stay asleep. No dice. By Eden's continuous loud verbal expressions, we figured she was not impressed that her mother got up so soon. After about 10 minutes of expressing her dis-satisfaction, mom went back in to console her some. Later, mom came out laughing, she said as soon as she crawled into bed, fully expecting to have to explain why she'd left in the first place, Eden looks over and very calmly said "it's comfy up here, mommy" (she's right, her bed is pretty comfy!!)

This week we're praying that Eden's white blood counts are high enough so that she can get chemo treatment on Wednesday, and that side affects stay away.

Please know that Selena and I are extremely thankful for the support and prayers we have and continue to receive!

Memorial Day Weekend

2009-05-25T22:00:00.008-05:00

This past Friday was a busy day at the clinic and Eden enjoyed meeting new friends. My usual fear of germs was minimized with the great lab results she had on Thursday. Most of her time was spent looking for any new books that may have been added to the bookcase and practicing her artistic talents on the chalkboard. After a wait to see our Dr. I, volunteered all the necessary information he needed in order for them to make the decision to proceed with Eden's chemo . . . "no fever, no vomiting, no mouth sores, etc." Maybe I shouldn't have shared how well Eden is doing as Dr. Tannous informed us they would be increasing her chemo, since she was doing so well, to the point she cannot tolerate any more. The thought that they will be pushing her little body gives Kurt and I mixed feelings. We enjoy the fact that she is doing amazingly well and we notice minimal side effects with the reduced chemo but, then we say "bring it on" as we know the side effects are part of treating our daughter with cancer.

Our weekend was filled with spending time with friends and family, and as always, spending many short stints of time outside. That crazy cat is still up the neighbors tree, and Eden continues to tell us "that cat HAS to come out of the tree to eat". "Silly kitty".

We feel blessed that Eden's been doing so well over the past couple of weeks. We try really hard to continually stay positive! Thanks for all the prayers and support!

Friday

2009-05-21T22:39:00.004-05:00

Sorry we haven't updated since last week. We've been busy checking on the apparently stray cat that's refused to come out of the neighbors tree for three weeks! After hearing me tell Selena and Eden "there's no way that cat doesn't come down at night to eat", Eden continually says, "there's no way that cat comes down to eat". It must be one tough cat, as its endured several heavy rain showers, a few pretty cool nights, and some hot days. By now, most of the neighbors know of this cat, and no one has seen it come down to eat or drink.....but yet Eden says "there's no way that cat comes down to eat". (get this - a neighbor and I have both pulled the cat out of the tree, and the silly thing goes right back up. i think the crazy thing had kittens up in the hole in the tree!!!)
I am very pleased to inform you that Eden's been doing extremely well. She's been outside so much, she's worn a path through the grass out to the swing set. Selena took her over to the hospital here in Washington today to get her counts checked, and we were floored when we received the results. Her white count has climbed up to 7.8 and her nuetraphil count is up to 5700 (both of these are well within the normal range)!!! So tomorrow, the two girls will be heading to Iowa City for Eden's chemo treatment at the clinic. Eden will be excited to see Mary Lou and/or Carolynn. Thanks for all your continued thoughts and prayers!!! We'll try to do a better job of updating.

Thursday

2009-05-14T22:17:00.004-05:00

Wednesday's treatment went very well, according to Selena. She said Eden did pretty well, although for some reason she wasn't quite as bubbly as she normally is. Hey, we all have our down days once in a while right. Eden didn't end up having to have the LP (shot of chemo in her spinal column). Side effects to the chemo haven't seemed to show up yet, and we're praying they don't!

Thursday proved to be another great day for Eden. She started the day off earlier than normal by getting dad up around 6am (yawwnnnn). For breakfast, we decided on french toast. "Eva bread" got the nod. So, out came the eggs and milk, which of course, Eden wanted to help mix the eggs AND remove the little white parts that are attached to the yoke (ever wonder what those little things do for the egg)? Once the mixture was completely mixed, I had to wet a paper towel to wipe the kitchen floor clean of the egg splattered from Eden's fork. Fast forward, french toast is cooked, and Eden decides she'd rather eat cereal! Hmmmmmmmm. Oh well, dad ended up with a full tummy of french toast, and Eden ate two bowls of Life cereal (yes, I am a push over).

Eden's next appointment at the clinic will be next Friday, so we're shooting for good blood counts by next Thursday.

Hope you're able to get outside and enjoy the weekend, we certainly will be!

Treatment On

2009-05-13T05:37:00.003-05:00

We will be spending the day with our friends at the clinic today . . . . Eden's blood counts were amazing. Her WBC was 3.4 up from 1.0 last week and her neutraphil count was 1900 up from 40 last week. We are just amazed! The exciting part is that her little body is going to go into this next round stronger than ever.

Have a great Wednesday.

Enjoying the Great Outdoors

2009-05-11T21:19:00.010-05:00

Eden is doing wonderful. She made a huge turnaround last Thursday after 2 weeks of not being herself. We have been enjoying our time so much lately that we have forgotten to blog . . . our apologies. Eden has not received chemo since April 23rd due to her low blood counts and we are hope full that her counts tomorrow will have improved so that we may continue treatment on Wednesday. Her neutraphil count must be 750 for her to continue treatment and last week her count was 40.

Eden's appetite has definitely rebounded over the past week. She's regained her once love for asparagus and green beans, and she is even expanding her horizons and ate several bowls of pasta over the past couple days. With the nice weather we've had, we certainly have spent a good deal of time outdoors here at home, but we also made it out to her "grandpa Jim's" to visit the horses, cows and calves. So out at the farm, she not only got to see the animals and pet some of them, she convinced Grandpa Jim into letting her give an oat/corn snack to Dazzle (a very gentle 29 yr old horse). She also got to experience her first mushroom hunting adventure in the timber. She did real good, until we wandered near a creek with flowing water in it. She's definitely my daughter, as she has a love for the water. She wanted down into the creek in the worst way. Although we didn't find any morels, we had a good time stomping through the woods. On the way back up to the house, as we drove through the field in Jim's farm truck, Eden asked to see a turkey (don't really know what sparked that), so we all started looking for some, out of the clear blue sky, a big wild turkey came running right in front of us, then took to flight and down into the timber he went. Eden's eyes never left that bird, and she was quite happy to get to see it - I think we all were!

Obviously, we're hoping and praying that Eden will be able to get back on track for chemo this week! As I type, she's tucked comfortably in bed, with her new Curious George that she got from a Dance Marathon event. As always, thanks so much for your time following the blog and for keeping Eden in your prayers.

wednesday night

2009-05-06T21:20:00.003-05:00

Well, it's Wednesday night, and I just realized we haven't blogged for several days. Sorry faithful blog readers! Eden has been doing ok over the past several days. Not great, not bad - just okay. She continues to tell us her hair is growing back, and she is correct, at least it seems to be coming back in, ever so slowly. We've been pleased lately with her improved appetite because over the past few weeks, it's been a real task to get her to eat much of anything.

Selena took Eden to get her blood counts ran on Tuesday, to see if she would be able to get chemo today (Wednesday). Unfortunately, her white count and nutralphil count were too low again to receive treatment. We would really like her to be able to continue treatment as she won't make up the chemo she misses - once her treatment is over, it's over. The Dr's said the study's have shown that making up the missed treatments doesn't improve the patients chances of a full recovery. So, we're hoping and praying for her white count to jump up so she can receive chemo next week.

Before I left for work this morning, Eden and I watered our freshly planted garden. It seems as though gardening will be something the little girl loves to do - okay, so she could probably could care less about gardening, she just loves being outside with her pops (and mom). This morning, Eden and I decided to take special care of a few sprouts of field corn that are going throughout the garden. Apparentlhy the squirrels forgot to go back out and dig up their stash. We'll post some photos later this summer of Eden and her "corn field". Other than gardening, we've spent a good deal of time swinging and doing unnerdogs. Selena and I both thoroughly enjoy our time outside with Eden!

Please continue to pray for all of our friends effected by cancer.

Good weekend at home

2009-05-03T23:08:00.008-05:00

It's sure been nice to be home, especially when the weather is so nice!

Today, Eden was reminding Selena and I that her "hair is coming back" as she dips her head toward us and running her right hand back and forth across her scalp. Like always, we replied by telling her "yes, and it is just beautiful". Selena asked Eden what color her hair is - Eden responded with "Pink". Pink is Eden's favorite color, but it's not currently her hair color.

Eden enjoyed getting to spend most of the weekend with her Aunt Kristi and cousin Brooke. A good deal of Brooke's time was spent in front of Eden's pink kitchen cooking eggs and making cookies - direct orders from the smallest person in the house of course. Until today, Brooke didn't realize that cookies are made (in Eden's kitchen) by mixing plastic tomatoes and slices of plastic cheese together in a really little metal pan using plastic forks.

Since it was such an incredibly nice day today (Sunday), Selena and I finally got our garden planted, Eden enjoyed some time swinging in the backyard, we found 3 morel mushrooms next to her swingset, and we made a trip out to Grandpa Jim's house (her adopted grandpa) to see and pet their horses, and watch the cows and calves. By the expression on her face, being up close and personal to the horses was the highlight of her day.

Selena's been doing an excellent job of administering the antibiotics from home. Eden gets three treatments per day, one at 4:30am, 12:30pm, and 8:30pm. Selena has to push a saline flush into Eden's port, then goes the antibiotic at an extremely slow rate, then another saline flush, and finally the heparin lock. Eden's been adjusting to doing this process 3 times a day, although Selena and I are already looking forward to this phase being over!

Time to hit the hay, 4:00am is coming up fast! (we have to get the antibiotic out of the refrigerator 30 minutes prior to go-time.

Thanks for spending your time following up on us! Hope you all had a good weekend.

Our Reality

2009-05-01T06:16:00.008-05:00

Friday morning. Eden is still asleep in her big girl bed and I am ready for her to wake up so we can share the day together. It will be a bit chaotic this morning but well worth the goal . . . HOME.

We have been in the hospital 8 days and this stay has forced us to recognize our reality of our daughter battling cancer. Eden has done amazingly well with her treatment. After the first month of steroids the last 2 1/2 months have been relatively normal. Yes, we spend one day a week in Iowa City at the clinic but at home we have adapted to our new normal. She has been sick a limited number of times and has only had only one other non-chemo hospitalization (RSV). This visit has reminded us the severity of cancer and the 2 1/2 year battle we will win.

Eden's next phase is interim maintenance. I haven't looked at it too much as the name itself does not sound to invasive. To start this phase her blood counts will have to rebound to a certain level (I was going to say normal, but the level is only half of normal). From yesterdays counts we will have a while before we will resume chemo. The interim maintenance is followed by delayed intensification. This is the phase of treatment I fear. This will be the most intense treatment she will receive. It is so hard to comprehend that she still had to endure more chemo at a greater intensity.

Counting our Blessings for the week

- we are so thankful that we were 3 blocks from the hospital when Eden became ill and in the clinic when her vitals were questionable.

- Kurt was with us on our trip to the clinic.

- Eden responded well to the antibiotics

- Amazing staff at UIHC. We love them all!

- Friends that packed our bags, mowed our lawn, brought us dinner and have continued to uphold Eden in prayer

- Employers that have been more than understanding of our situation.

- Blood donors - Eden received another blood transfusion yesterday

We are counting our blessing hope you can as well.

Home on the Horizon

2009-04-29T20:09:00.004-05:00

Eden had a pretty good day today. She enjoyed the playroom. She cooked, entertained the cows in the little people barn yard set, and even made a couple of rounds on the tricycle. She did get sick before lunch; but, it appears as though it was an isolated incident. Eden took a super nap today - a much improved skill since we have been up here. (I guess our little girl is just growing up so fast!) This afternoon/evening was filled with stroller rides, time with Daddy and playroom activities! Who knew a two year old could have sooo much fun in a hospital?

Eden's blood counts still remain extremly low however, her doctors believe that she may still be on target to be released on Friday! We try and remain flexible because we know that they are the pros and circumstances frequently change! If she is released, we will be required to administer some of her IV meds at home. This task is really outside of our comfort zone. The alternative is to have to stay here or to come back up every day. Please pray for comfort and guidance for us regarding this.

With Love

Tuesday

2009-04-28T21:38:00.014-05:00

Today we got word from one of the Dr's that we may be released as early as Thursday, if all continues to go smoothly. Tonight her temp snuck up to 37.7 C (100 F), so we're counting on it NOT going up any further through the night, or we may have to stay much longer.

Mom and Eden had a good day here at the hospital. Eden felt good enough to attend a music class put on by the child life services group. After music time was over, Eden spent the better part of the day dragging mom through the halls. Tonight when i arrived at the hospital, Eden had us both walking up and down the halls. It's actually quite a bit of fun for us all to be together, and Selena and I both enjoy witnessing Eden's attention to sights and sounds. She notices things we overlook or take for granted, then we usually end up taking a few moments to stop and talk about whatever it is she noticed.

Have I mentioned that Selena and I really appreciate Eden's nurses?? We've been so extremely blessed to have really great nurses taking care of Eden. When i say "taking care of Eden", i mean things like changing E's bed and setting it up real nice with pink blankets and arranging her stuffed animals, encouraging and playing with her when it's time to do the blood pressure test so we actually get a good one, being gentle with the temperature readings (inner ear), pretending they are listening for monkeys in her tummy when they listen to her heart and stomach, and over all treating Eden in caring but yet fun ways.

Dinner tonight consisted of a really big basket full of home cooked food and desserts, a real treat - thanks again Suz!

Thank you all for continuing to read our blog and for supporting us through prayer!

#15 - I owe you a phone call.

Sunday

2009-04-26T20:44:00.005-05:00

Eden had a good day today! We were allowed to get unhooked from the IV pole late this afternoon so we could go outside and enjoy some fresh air. Selena and I were so excited to get Eden outside that we were racing down the halls toward the door (is that setting a good example???). (It was moms idea) Selena running out in front, and me pushing Eden in her stroller, not far behind. The thought crossed my mind that the little wheels on the stroller wouldn't hold up and i'd end up flying over top of my daughter - how would I explain that to Eden's Dr's??? Back to the race - other people walking down the hallways politely stepped aside so we could rumble through. Once outside, we decided to forgo the playgrounds where several other children were playing (remember the extremely low white count) so we found some nice green space out in the front of the hospital. This turned out to be a great find! The entire area was shaded, landscaped with various types of flowers and shrubs, had stone paths to walk on, large stone boulders to play hide and seek behind, and a series of slab-limestone water falls. While we were there, we witnessed a few birds bathing in the water falls, and tried to pet a rabbit and a squirrel that were also trying to enjoy the day (by the way, we couldn't catch the rabbit or the squirrel). If the weather is nice tomorrow - know that we'll be out taking several walks!

One of the Dr's said we may be able to come out of isolation tomorrow, since nothing has been growing in the blood cultures. So pray that trend continues!!!! Her white count and neutraphil count both dropped slightly today which obviously isn't great news.

The girls just finally fell asleep (Eden held on longer than mom did) - all is quiet, for now. As always, thanks for supporting us in so many ways.

Saturday

2009-04-25T20:16:00.005-05:00

As I type tonight, it's 8:19pm, and we'd hoped E would be sleeping, but of course, she's not. She's currently talking to her nurse Kristin. Kristin is a great nurse, and very nice to Eden (just like all of Eden's nurses). Nurse Kristin just completed Eden's blood pressure test and it was a breeze (wasn't always that easy), and her temp was 37.1 degrees C, I don't know they use Celsius around here, because everyone has to go to a chart to tell me what that means in Fahrenheit (by the way, 37.1 C = 98.8F). Eden and Kristin are currently making small talk about Eden helping Kristin tonight on rounds and various other nursing chores.

Eden ate bits and pieces of her supper tonight and best of all, drank lots of fluid. For some reason though, she isn't doing as well with brushing her teeth or taking the nystatin treatments. When she realizes it's coming, she buries her head in her arms and tries hiding....but we push through it and get it done.

Eden had a pretty decent day today, all things considered. She remained fever-free again today, so we're real thankful for that. Still no results on the various tests. Her white count came back at today at 0.5 (normal is something like 5.5-17), and her nuetraphil (this is a portion of the white blood count) is 70 (the low end of normal is 1550).

Selena and I are doing pretty good, but it does get a little rough finding things to keep E interested in doing since we're confined to room the size of my old dorm room (thankfully this room doesn't stink nearly as bad). We're just thankful that we have great facilities to be spending this time in (can you imagine going through this in a third world country???). Today, we had some great friends stop by and drop off some food, which was not only appreciated, but very tasty!

As always, thanks for your thoughts and prayers for us. We're shooting for tests to come back negative (for whatever it is they're testing for).

Shhhhh - it's 8:51, and the girls are nearly asleep! I think I'll shut-er down myself.

Levetzow x 3 - OUT.

One day down

2009-04-24T22:04:00.004-05:00

Well, we have our first full day of this stay under our belts. Eden has been a trouper; but, she is still experiencing some of the previously mentioned concerns. She still does not like having her vitals checked and is still not acting like herself.

Eden's doctors are treating her for sepsis due to her high fevers and low blood pressure. It is a kind of virus in her blood. They have not determined that she has sepsis but because of her blood counts they will give her the regimen of antibiotics without knowing. This news qualified us for a ten day stay. The unfortunate part is that we are highly restricted. Last night, we mentioned that she cannot leave the room. A mere jaunt down the hall to the kitchen means gowning up for Kurt and me. Visitors are strongly discouraged because of these precautions. Please pray for healing of Eden's little body and that we are able to find enough to keep her busy and entertained in a small room for nine more days:)

Our room phone is 319-353-9461. You are welcome to call and we ask everyone to call before visiting.

Clinic Day turned Hospital Stay

2009-04-23T20:04:00.005-05:00

Well, today was supposed to be clinic day, and it was; however, Eden was also admitted this afternoon for a fever. She had gotten sick in the car just blocks from the hospital this morning. So, that was the first concern they addressed when we arrived.

Eden was not treated at the clinic with her routine chemo as it was decided they needed to start IV antibotics before administering her chemo. As expected, her numbers were low. Her temperature was checked frequently and was inconsistent. By mid afternoon, it was decided that she should be admitted due to her low numbers. Not exactly the news we were hoping for; but, we are grateful that the doctors make these calls. Right now, Eden is considered to be neutropenic. This means her white blood cell counts are exceptionally low and there are a number of precautions that go with this diagnosis. One of the precautions includes that she is not permitted to go to the playroom - just too risky for her right now.

Between doctors checking in, vitals, and nurse visits, we are enjoying one of our favorite hospital pastimes . . . movie watching. (To be honest, these stays are really about the only time Eden gets to watch television.) Eden is not really acting like herself as she is tired and obviously not feeling up to par. We are hoping that some rest and some of the medications she is receiving will give her a boost.

Friends, please pray for her fever to subside and that she will adjust to regular vitals (currently a traumatic battle). Also, please include our friends on the floor who are fighting battles of their own. Sweet dreams -

Tuesday

2009-04-21T22:42:00.008-05:00

Eden had a good day today. Yesterday her mom took her up to the hospital to get a "recharge" - a red blood cell transfusion. The transfusion obviously made her feel better, because she got her color back, had a smile again, and was bouncing around the house today like she had dipped into her secret stash of pixie sticks.

Eden's been having a wonderful time playing with her new toys, and reading her new books. Thanks to all of you who delivered or sent a gift for her!

Late this afternoon, although it was chilly and windy, she wanted to go outside and swing.....we hem-haughed back and forth and finally decided...Bundle up, we're heading out back to the swing-set. However, we first made her agree to not pitch a fit when its time to go back inside. Her mom even made her make eye contact while making this verbal agreement. She had a great time on the swing set, rosy red cheeks and all. Not sure what was more fun for her though, the actual swinging, or making her dad give her underdogs. Its really funny hearing her request "unnnnerdog" over and over). Oh, by the way, she held up her end of the deal - no complaining when it was time to go back inside.

Just before going back inside, we were all playing "rocks" on the front porch, when some special guests stopped by while they were on their walk. Eden has spent so much time this past winter looking out the front picture window, it was nice for her (and us) to be able to visit face to face.

So back inside we go, take our evening meds, change into jammies, read a few books, do our evening prayers, and she was out like a light.

This week, our clinic visit is Thursday morning instead of Wednesday morning, and for the first time in a while, i will be joining the girls, and I am looking forward to it.

Thanks for your continued support!

Eden's Birthday

2009-04-20T20:36:00.004-05:00

What a monumental day in a child's life! Eden turned two today. She received a wonderful gift today . . . a blood transfusion. (Probably the most expensive gift she will ever receive too.) Eden's numbers were low today and have been dropping so we spent most of the day up at the clinic. Thank you to those of you who are blood donors, you really improved our day! Eden had a special visitor this afternoon after we got home from the clinic. Molly, her four-footed friend is always a delightful treat for Eden (and a very low germ risk for her.) All-in-all, she had a good birthday and we are very blessed.

Our clinic day this week is Thursday. We will keep you posted on how her visit goes. As always, we are grateful for you our supporters and prayer partners.

Our Mirror

2009-04-15T16:13:00.006-05:00

Have you ever thought of raising a child as a mirror? We just look at Eden daily and see the traits and vocabulary she has inherited from both Kurt and me. She thrives on routine, which is totally me (I so want to know what to expect.) Outside is her favorite place to be and Kurt would happily survive in the outdoors. Today I laughed as she said to me, " actually Daddy's, not Mommy's". I couldn't think how she knew that word, let alone how to use is correctly. Then I thought about our trip to the clinic today and she was telling me to go at the stop light. I asked her what color the red light was and she said, "green" my response, ". . . actually it is red."

Today was clinic day. I think Eden has figured out that on mornings I come home early from work are the days she visits her friends at the clinic. She must have heard what a beautiful day it was going to be as she did not want to go. We had a bit more of a struggle to get her port accessed and necessary procedures done. Her blood counts have dropped, which is expected with the treatment she is receiving, so we will be watching her to see if we need to have a blood transfusion. The course of treatment required Eden to receive 2 shots in her legs (these go into her leg muscles, much worse than the pokes at home). She did as well as could be expected. When nurse Carolyn was leaving the room she told her, "Mommy buy Edie frog." No clue where she came up with this one; but, I told Carolyn that after witnessing the large shots she just gave Eden, I would be finding her a frog. Rachel from Child Life (we love them all) saved me a trip to the store or a farm pond as she gave Eden a black and gold frog - it is her Hawkeye Frog. Eden loves her new amphibian!

I wanted to take a couple of lines to update you on Jenna (for all of you that are not from the Washington area.) God is good! Jenna's course of chemo has proven to be successful and has drastically reduced the size of her tumor. She will be receiving one more round of chemo before surgery to remove the tumor. The alternative was a liver transplant. Thanks for praying for our little friend Jenna, please continue to keep her and her family in your prayers.

Also, thanks for your prayers about Eden's ear infection. Her left ear is still red. Please pray that the infection subsides and does not flare up to result in a fever.

Eden is taking a nap and we are so excited for her to wake up and enjoy this beautiful day!

Thanks for all you prayers and support!

Saturday

2009-04-11T21:19:00.005-05:00

Sorry for not updating more this week . . .

Wednesday we were at the clinic for treatment. Eden enjoyed seeing all her friends at the clinic and she spent her free time making new friends. We are so thankful that Eden's days at the clinic are something she enjoys. Eden's Dr's did feel that she was having an "off day." We all agreed it has taken a little more energy on our part to keep her happy. She had been "okay" until Friday night . . . she was inconsolable much of the night and the nausea/vomiting began in the early hours this morning. We gave up on sleep and unpacked the Cinderella DVD (it had been packed away since her initial hospitalization), and this turned out to be such a treat for her today! Shortly after breakfast, she started asking us to clean her right ear out . . . an ear infection was confirmed after a visit to our Dr's office here in Washington. I was somewhat relieved, as her temperament and the vomiting was likely related to the ear pain and not her current course of chemo.

Today, we took a stroller ride several blocks from home, typically, this is a cherished event for Eden (and us), but today, the event wasn't quite as enjoyable - for any of us. The overall condition she was dealing with (chemo + ear infection) wasn't allowing her to be happy with anything. She wanted to walk, then be held, then get into the stroller, and non of these really seemed to please her. Hopefully tomorrow will be a better day.

She just completed her last poke at home . . . quite possibly for her entire treatment period. She has done so well with the pokes, and all the other treatments she has to go through.

As I type, Eden is peacefully sleeping in her own "big girl bed", and we sure hope that continues throughout the night!!! Thanks so much for all your thoughts and prayers for our little E!

Have a great Easter!
Selena and family.

Prayer Request

2009-04-07T20:18:00.002-05:00

Today we are asking for support for our little friend, four-year-old Jenna Waters. Jenna is from the Washington area too and she and Eden were diagnosed around the same time. Jenna has a form of liver cancer. Jenna and Eden share the same clinic day and we visit at the hospital when both Jenna and Eden are inpatient. On Wednesday, Jenna will undergo testing at the University which will be used to determine her next steps in treatment. We ask that you will surround Jenna and the Waters family in prayer during this day and the days following as they await and digest results and a new road map for treatment. Friends, we are abundantly blessed to have you as our partners in prayer - please lift up this precious little girl and her family! God Bless!

Who's loosing their hair?

2009-04-06T21:16:00.003-05:00

We believe Eden's hair is starting to grow back already! Yeah!!! Although it's hard to tell if it will stay or continue to grow. It may be due to the break in chemo that she involuntarily had for a couple weeks. Eden is convinced her dad is also on chemo, as she points out that I too am loosing hair up top. It's interesting how her play often involves her "Chemo Duck" - a gift from the Child Life Services at the hospital. Eden enjoys hooking Chemo Duck up to the chemo injecting syringe and uses her stethoscope and ear thermometer to check Chemo Duck's vitals. Just tonight, she was pretending to put cream on mommy's back, just like the nurses do prior to the dreaded lumbar punctures.

We're very thankful that Eden's been so healthy throughout her treatment thus far, and we'd like to think that all our precautions have paid off. It's apparent that Eden has become accustomed to this new lifestyle, as she reminds anyone that visits our home to wash their hands and she keeps her own hands clean in her own little kitchen sink.

This round of treatment will have us going up to the University Hospital for the next three weeks. Each week involves out patient treatment on Wednesdays, oral meds morning and evenings, nystatin mouth swabs three times daily, and 3 chemo pokes in the leg each week from home.

Thanks for the continual prayers for our little girl.

2009-04-04T06:28:00.004-05:00

We had a great overnight stay this week. Yes, you read that correctly. Eden was admitted on Wednesday for chemo and IV hydration and we were discharged in record time on Thursday. Eden was able to spend the majority of her time in the playroom which is always good. She was disappointed (to say the least) when it was time to go home. It is always great to see our extended family at the hospital . . . we do miss them, but are glad we got to leave.

Tuesday night I had some emotional straightening up in Eden's room - cleaning out Eden's drawer of hair bows. I love her little, soft, mostly bald head, but Kurt and I both miss her baby fine, red curls. Eden loved all the fun accessories and was never without something in her hair . . . she went into surgery with a bow in her hair. Surprisingly she stopped talking about them just when it was impossible to attach anything to her remaining strands of hair. In talking to her Kurt said "Eden, that chemo made your hair fall out" her response in the most excited little voice "okay." God definitely prepared her for this change. We do think the break in chemo has allowed her hair to start to come back. As healthy as she is going into this round I doubt she will lose her hair this round.

This round does take us back to the "pokes" which has been something Eden has been anticipating since receiving new band-aids to add to her collection (thanks Meyers & Tarbell cousins). Only 1 more poke this week!

Please pray . . .
-That Eden will continue to take her meds well. She is back on the chemo that makes everything taste like metal. Even though she is a great communicator this is impossible, for a not yet 2 year old, to express.
-That her body continues to respond well to the drugs with minimal side effects.
-And praise that we have such wonderful Drs and nurses that care for Eden.

over night stay

2009-04-01T21:15:00.005-05:00

Sorry we haven't updated for a while! Eden's blood counts were very good today, so we were able to get admitted for treatment (we couldn't the past 2 weeks due to low blood counts). Her white count was up to ~3, and the rest were all good. Eden finally got to see one of her favorite nurses, Mary Lou!! Mary Lou wasn't supposed to be taking care of Eden this morning, however, she made some time to play with Eden. Mary Lou rocks!!! The worst part about today, was the wait to get into a room, and the wait lasted until around 4pm. We have a roommate, but she's older and we hardly know she's in the room. Eden's been doing really well, so our roommate hardly knows Eden's in the room. Eden was finally able to receive an oral dose of chemo this evening around 7pm or so, then she also got some through the IV around 9pm or so. The wait has been due to her ability to get lots of fluids into her body, so that's why they hook her up to fluids via IV. Mom and Eden are currently sleeping, in a big girl bed, together. Mom was with her all day long, and told me she'd "take the bed with Eden". I wasn't going to argue, since they both need sleep pretty bad (Eden didn't nap today at all). Tonight we have to change Eden's diaper every 2 hrs, but she normally sleeps through the changes, so that's nice!!!

Thanks so much for continuing to check in on our progress! Love you all.

Pancakes?

2009-03-29T20:23:00.006-05:00

Apparently Eden felt as though she was jipped out of pancakes, at her own event!! So for breakfast this morning, pancakes got the call. Even though they were left over, they still tasted pretty good!

At home today, Eden had a blast playing with some of the props (cardboard tri-fold display of Eden and her cancer info) from the breakfast benefit. Mom and I crawled around it, while "wild-woman" chased us from behind. It's unexplainable how nice it is to see her bouncing around with a huge smile on her face, giggling and laughing! We're so extremely blessed that she continues to have such an uplifting spirit.

We're still in awe of what happened over the weekend, ~650 friends and family showing up to support our family! It's very humbling to be on the receiving end of such an event! I can't wait to be back on the giving end again soon, and Selena feels the same.

We're just so blessed to have Eden as a daughter, and we believe that the reason for her being choosen to deal with cancer will be revealed to us one day. Until then, we'll continue taking it one day at a time, and fighting for all we're worth to BEAT it!

As you pray, please pray that if Eden's blood counts are high enough to get admitted (scheduled over night hospital stay), that her body once again responds well to the chemo that she'll receive both at the hospital, and here at home.

Abundant Blessing

2009-03-28T18:41:00.009-05:00

What a surreal day we had today! You can imagine how humbled we were by the 650 people, family and friends, from hours away and 3 states who took time out of their busy schedules to support us - THANK YOU. One can not comprehend how humbled we are by the generosity and love shown towards our family. You hope no one has to go through our circumstances but we hope you will have a time in your life that you will feel as loved as we do now. God has truly shown us how HE will supply all our needs (especially through all of you) . . . from the first care package brought to us at the hospital, meals brought to us at the perfect times and then today . . .

We must acknowledge the generosity of your donations today. Your financial donations to help cover our additional expenses over these years were more than we could have asked for. And, to be honest, there are not words to sufficiently acknowledge those who headed up organization of the event: Kurt's entire office and our friends. A special thanks to Teresa, Jeannie, Suzanne & Rick. By acknowledging a few, we KNOW we have left out so many of you. Please know how much we appreciate you all!!!

It was great to have had the chance to visit with many of the people at Eden's benefit, but we feel bad and apologize for not being able to visit with everyone that took the time to come support our family. Just seeing your faces leaves such a lasting impression. We joyfully went through the guestbook with Eden today to share with her all the people who came to support her. We know there are so many memories created today that we will reflect on especially during the peaks and valleys that the next couple of years will present.

Now, about the star of the show herself, Eden. God is good! Eden's Friday morning labs showed she did not need a blood transfusion. Eden is still wanting to go see her friends at the clinic; but, we are glad we did not have to go see them on Friday. The jumps in her counts indicate that we will be able to continue with her chemo this week. As of right now, we are on for a stay in the hospital Wednesday night after her clinic visit as part of her treatment plan.

Friends, God has blessed us so abundantly by giving us YOU! Your support, friendship, prayers, time, and financial gifts have drastically improved this journey and helped make it through the days we were unable to go through alone. We love you!

Another Clinic-Free Week

2009-03-24T23:21:00.006-05:00

Eden continues to demonstrate a chipper disposition this week. Today was busy as we were trying to figure out if a trip to Iowa city was in the cards for Eden this week. She started today with a blood draw in town. With the final results in by late afternoon, a clinic trip was ruled out again this week. Unfortunately, her numbers were not high enough again this week for her treatment. So, we will are shooting for treatment next Wednesday. Her doctors have ordered more testing on Friday to check if a transfusion may be necessary for the weekend. Thanks for your prayers about this.

A highlight of today was Eden's second hair cut. It not only meant a trip out of the house; but also, a hip new 'do to boot. (Thanks Rochelle) Eden was quiet pleased with herself and did some modeling for Kurt. Interestingly enough, she was highly interested in nurse, Mary Lou, up at the clinic getting a chance to see her new style.

Weekend

2009-03-22T19:12:00.007-05:00

Helping Daddy has been the highlight of Eden's day today. She got to help by using a drive-driver (screw driver), as daddy repaired the shower. All afternoon, she and daddy went into the bathroom to make sure the shower was still fixed! Each time, it was still fixed! Way to go Daddy and Eden! Oh how nice it is to have a Handy husband!!!

Thomas the Train comes to town . . . not sure if you all caught it but the train that comes through Washington is Thomas the Train - at least to Eden it is.

Missing (nurse) Mary Lou . . . Eden has missed seeing all her friends at the clinic this week as she has been requesting to see Mary Lou all weekend. I think she will be ready to see them all on Wednesday and we are ready to continue to "kick cancer". Please pray that her labs on Tuesday show improvement so that we can proceed with this round of treatment. Assuming her lab numbers are high enough, Eden will be admitted for chemo & IV fluid.

Cooking! Other than cooking eggs and baking cookies at her kitchen, Eden enjoyed helping us make homemade pancakes for breakfast and cookies (in our kitchen). She knows that she needs to ask for a dining room chair to be moved into the kitchen, to be placed by the counter, where she stands to assist in pouring ingredients and stirring. She scares the death out of her daddy, because she assumes the responsibility of holding the mixer, and Kurt warns me that one of these days she's going to turn it on and either scatter the kitchen with dough, or loose a finger. Needless to say, when she's helping us, there are always a set of adult eyes on her.

We're asking for prayers that this week's regimen goes well, and that Eden's little friends continue to do well in their own battles with cancer. You all don't know how much we appreciate not having to go through this alone! We really truely mean that too!

A "Bye" Week

2009-03-18T20:36:00.004-05:00

Well, I am sure that you remember that today is clinic day; however, no clinic for Eden today. Eden had blood work done yesterday and her numbers were not high enough for her chemo this week. This is not unusual during this stage of her chemo. So, we will have labs drawn again next Tuesday to see if her counts look a little better.

Despite her numbers being low, Eden has been her usual joyful self and quite full of energy. Our day was consumed with an early nap, reading, cooking and strolling. Isn't it delightful to get out?

The picture is her getting ready to go for pokes at our clinic across the street she was ready to get out of the house, even for pokes. The sparkly band aid and fruit snacks were an added bonus.

Thanks for your prayers, we feel very blessed with how healthy Eden has stayed during this phase and how minimal the side effects have been. Please continue to lift our little sweetie up . . .

The weekend

2009-03-15T20:21:00.004-05:00

Sorry we haven't blogged since Friday. We are very pleased to report that we've had a wonderful weekend. Eden still isn't eating very much, but she continues to drink plenty of "cow milk". The dreaded leg pain occasionally comes back, but seems to fade away as quick as it starts. Saturday morning we found ourselves awake, having discussions with a certain little someone that thought 4:15am was 10:30am. Her mom and I didn't think it was as much fun as she did!! For some reason, the little stink-pot was up and ready to go! She wanted to get out of bed and start reading some books. She did manage to con mom into getting up and getting a cup of cow milk, which she drank the entire thing. Back in bed, she was still ready to go go go. We told her we're not getting up until the sun is shining - around 5:30am, she fell asleep, we think. At 7am, she was up and raring to go. Not sure where the kid gets all the energy!!

We hope you all got the chance to get out and enjoy the warm spell we had on Saturday. The three of us took a long walk up to the square in Washington - one of our favorite courses. We saw some Easter eggs hanging in trees along the way, saw a few puppy dogs having their own walks, bumped into some friends on the square, picked up some lunch and then headed for home. It was an enjoyable trip! Sunday was pretty much the same thing, other than it was a tad cooler with the wind blowing, so we came home and Eden FINALLY got to swing in her own swing in the back yard. After swinging, she helped me pick up corn cobs that the squirrels left behind. Our 5-gallon bucket was half full by the time we were done. We ought to have some healthy squirrels (by the way, we have one black squirrel that visits the spinner frequently). Tonight as we were getting Eden ready for bed, it was nearly 8pm, and we asked her what time she thought it was - she cocked her head off to the one side and replied "time for Edie to go to bed". One book later, her eyes were closed and I'd guess she was watching cows jump over the moon (one of her favorite books). Night y'all.

Done???

2009-03-12T21:51:00.005-05:00

Eden's nausea and vomiting stopped last night! YEAH!! - Thanks for the prayers!

Eden had a good day today. Although she didn't eat much today, she drank a lot of fluids, which is a necessity for some of the chemo she's taking.

We're sure looking forward to warmer weather so we can get out and take stroller rides and look for squirrels, rabbits, dogs, cats and birds. Eden LOVES locating and telling us ALL about the stuff she sees on our walks.

Sorry so short, but we just wanted to quickly update all our faithfuls! Thanks for your continued support in so many ways. Love to you all!

Surreal

2009-03-11T20:22:00.021-05:00

You may remember that today was clinic day. We celebrated her last LP (lumbar puncture) for this round. It went great! Thanks for your prayers. The staff up there is amazing and we know that God surely has a hand in the good work they do. Eden's procedures went really well today and the morning was full of those moments that seemed to be out of a movie. I have mentioned before about how much we adore Eden's nurses, doctors and support staff; but, they never cease to amaze us by how much love they show Eden while we are there. Eden's favorite clinic nurse came in this morning to see Eden making some tea and cookies and Mary Lou joins in on the fun. I had to grab the picture so you can get a small glimpse of our reality.

Only a few minutes later, we were joined by Eden's managing oncologist, Dr. Staber, in the hall while we were looking for books. She had already met with us and yet she swooped Eden in her arms as she was taking care of some business in the clinic. Eden loves her friends up in Iowa City and we are humbled by their love for her.

Eden, Dr. Staber, & Dr. Rolla Abu-Arja

Eden's numbers were low today. Actually, her white cell count is exceptionally low; so, we will be taking on a new level of diligence (hmmm, not really sure how we can turn it up a notch; but, we will.) This is part of this cycle of chemo. We are looking forward to days where we can get her out a bit more and don't need to be as cautious.

My posting tonight has been interrupted due to Eden getting sick . . . I so thought we were going to sail through treatment without this. Please pray that this goes away and that we are able to control the nausea and vomiting with meds. Also pray that her numbers make significant jumps this week so that she can continue with treatment next week.

A Monumental Day in Toddlerhood

2009-03-10T21:46:00.002-05:00

Eden had a highly eventful day at home. It was her first time going on the potty (parents, you really appreciate how HUGE this is). We will NOT be pushing this milestone for many reasons including the massive amount of fluids she must receive at night when she is inpatient. Eden was not nearly excited as I was until she got her sticker, a PRINCESS one at that.

Eden continues to impress us with her delightful disposition. Eden got a special surprise delivered today. A signature, American Cancer Society Boyd's bear arrived. We were both delighted! I was overjoyed by the keepsake, ready to put it up as a sweet memento from this time. Eden happened to fall madly in love with the bear and cuddled it throughout the day. ( I guess this is ultimately better.) Thanks for whoever made her day!

Tomorrow is clinic day. We will be celebrating our FINAL lumbar puncture of this round. I have promised the floor staff that I will be having a giant celebration; however, it is 10 o'clock, my eyes are drooping and I have yet to actually plan anything. This doesn't mean that it isn't one of the most monumental events in her treatment. Lumbar punctures could very well be the hardest of procedures that she has to experience (with the exception of bone marrow.)

Until tomorrow . . . .

2009-03-09T22:01:00.004-05:00

Today was another great day with Eden. We decided to make dad dinner tonight, not something i've been doing as much lately. Eden helped me make homemade buffalo chicken pizza and bannana bread. I let Eden stand on a chair, which put her right at the counter top so she could help. This was a big deal for both of us (she was very excited, and I was terribly worried she would fall). She did awsome. She loves to help dump the ingredients into whatever we're making, pays close attention to what is going on, and tonight, only spilled her cup of "cow milk" once (which dad cleaned up once he got home). As we were making the pizza, i kept telling her she is mommy's helper, and she would correct me by telling me "no mommy's baby". I suspect she WILL always be my baby. When I ask if she's daddy's baby, she corrects me and says "no, daddy's little girl". She's always consistent with her words.

Although it's hard to know for sure how her body feels, it appears as though her legs aren't bothering her like we suspected they were last week. We thank you all for your prayers, and we thank God for his gracious blessings in continuing to lay HIS healing hands on Eden.

We continue to pray for Eden's friends at the University, who are continuing their own battle against cancer! Thanks for your continued support. We can never thank you enough!!!

Not too much news

2009-03-07T22:14:00.006-06:00

Sometimes no news is good news right? Well, we haven't had much out of the ordinary news to update you all on lately. The last several days, Eden has continued to have good days with lots of energy. We still haven't had her out of the house other than to take stroller rides and clinical visits. Stroller rides consist of Eden pointing out things we wouldn't normally pay attention to - birds, signs, kids, sounds of passing vehicles & airplanes, dog & cats, just to name a few. It's very interesting to see how kids' minds work.

We're very excited to have new neighbors across the street! Through our large picture window, Eden's led the charge of keeping a close eye on their moving in. The other day, their tall U-Haul type moving truck backed into their lane and accidentally tore off a couple limbs from their tree - Eden certainly didn't miss that, nor has she forgotten about it. Today, we finished moving them in, and Eden was excited to see several familiar faces from the comfort of her picture window. These are just two of so so many story's we have of how her young minds continues to amaze us. Things she sees and hears come up from time to time, and as a parent, it just makes us smile to know she's learning.

As for her treatment schedule, the weekly clinical visits continue. Eden still greatly looks forward to seeing Mary Lou and Miss Donna, Dr. Rolla and Dr. Staber (and several other great nurses and family life specialists). We've had a great week, as we haven't had to give her any pokes or oral meds from home, just frequent brushings and her famous nystatin treatments. Next week however, we go back on oral meds again.

As you pray, please pray for strength in her legs. Over the past couple of days, we've noticed that her leg weakness appears to be returning.

Enjoying the day

2009-03-04T20:28:00.004-06:00

Eden arrived to the clinic in her normal style with a smile on her face and talking to anyone that will listen. Only a toddler that is in "confinement" would enjoy a trip to the clinic. We arrived at the clinic at 8:45 for our scheduled lumbar puncture, chemo via her port and shots in both legs. After her routine labs we learned that her Hemoglobin was 7.5 which would require a blood transfusion. Her white blood count was 1.1 which was the lowest it has been since her first round of chemo. To Kurt and I these numbers are not a representation of how she is acting. They tell me that the transfusion should perk her up and she will have more energy in a day or two. I am afraid if that holds true she will not be sleeping at all. The little girl that needed a "recharge" had enough energy to go without a nap today. Eden was great, we were at the clinic until after 5 in our little room and she left with the same smile we walked in with. To pass time during the day, Eden had me playing hide and seek - in the small hospital room. All the while she was hooked up to the IV pole, which made for easy searching for her!

Eden continues to do amazingly well with all of her treatment so I had to ask the Dr about all of it . . . "since she is doing so well now does that meant that we will be tolerant of all of her treatment?" In the kindest of words, she told me to enjoy the day as there are no guarantees for tomorrow. The 8 hours in a little room with my little girl was wonderful and I did enjoy the day!

Thanks for praying!

All Done

2009-03-01T21:39:00.006-06:00

Eden has successfully completed her first round (last week & this week) of pokes at home and she handled them unbelievably well. Her mom and I really wish we could take 100% of the pain Eden has had to endure, obviously, we can't, and therefore, we are so thankful that she's been such a trooper when she has to have a poke. When I get a poke, I cry before, during and after the procedure, Eden on the other hand, only cries from the time the nurse cleans the skin to about 10 seconds after the poke is over.

This past weekend was a good one for our family. We were able to stay home, get a few chores done, spent some time with friends and half our family, and best of all, Eden was herself. We baked lots of cookies in front of her pink kitchen, she got to play with Molly (our friend's little white dog), she smiled and laughed a lot and so that was joy we can not easily describe. Saying it's so great to see her laugh and play seems silly, but when you're dealing with life day by day, a good day is the best thing you can ask for!!!!! We're so very thankful we haven't had too many bad days. Of course, that's not to say this has been a cake walk, but we believe that the steps we've taken (being clean freaks) have helped Eden from getting a fever or something else that'd earn us a trip to the hospital for 5-7 days. Finally, I'd like to send a shout out for all you who are reading our blog, thinking about and praying for us, sending food and/or gifts, and anything i forgot to mention. We're truly appreciative for it all!

Praise God that a few of Eden's new little friends from the hospital have been having some good news lately in their battles with cancer.

Where is Grover?

2009-02-27T21:15:00.002-06:00

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

2009-02-25T19:36:00.005-06:00

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????

2009-02-24T04:54:00.002-06:00

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

2009-02-20T23:50:00.008-06:00

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!

2009-02-19T08:27:00.003-06:00

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!

2009-02-18T14:18:00.004-06:00

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

2009-02-17T20:52:00.006-06:00

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????

2009-02-16T22:32:00.003-06:00

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!!

2009-02-15T20:37:00.004-06:00

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

2009-02-14T21:53:00.004-06:00

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

2009-02-13T15:35:00.004-06:00

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

2009-02-11T20:02:00.015-06:00

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

2009-02-09T19:25:00.005-06:00

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

2009-02-08T20:40:00.012-06:00

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

2009-02-06T12:23:00.005-06:00

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

2009-02-05T21:25:00.009-06:00

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

2009-02-04T20:42:00.012-06:00

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

2009-02-03T19:47:00.007-06:00

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!

2009-02-02T14:04:00.005-06:00

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

Avocados

2009-01-31T20:47:00.003-06:00

As we prepared for our current trip back to the hospital, we thought two avocados would surely be sufficient for Eden's latest snack craving. Boy, were we wrong. We discovered that one of the avocados we brought wasn't ripe and so we found ourselves dependent on food service. Well, they have plenty of guacamole; but, no avocados. So a trip to the grocery later, we have one happy, sleepy toddler.

As we had guessed, they did put Eden in an isolated room because of her RSV. She has been tired from the virus so it isn't bad that she cannot leave her room. Tonight she ran a slightly elevated temperature and the rules indicate that a fever = hospital stay. We are praying that the mild teperature increase was the result of cuddling Daddy, and not due to the virus.

As you pray, please include that her little body can remain "fever-free".

Back at the Hospital

2009-01-31T08:32:00.006-06:00

Eden was ready for her Friday trip to the clinic . . . when I told her we were going to see Miss Donna (Child Life Specialist) she responded by saying "I ready!" Chemo went well. Eden's numbers were good, especially white blood cells.

Unfortunately, Eden has acquired a cough and as we watched the hours slip by last night, we made a call this morning. Dr. Nacos to the rescue . . . after testing and lung x-rays, all signs pointed to RSV. As promised, we have been sent back up to University. We think that she will be in isolation or at least on some restrictions while we are there because it is RSV. The great news is she is still her happy self and NO FEVER!!!!

We truly believe God has her inpatient again for a reason. We feel blessed that the RSV was found before other symptoms set in.

We promise to post more as we find out what we might expect from this stay. . .

2 "Pokes" . . .

2009-01-29T19:11:00.007-06:00

2 "pokes" . . . but not for Eden! Kurt and I were advised to get flu shots, so today we toughened up and received our "pokes". If any of you know Kurt's philosophy on the flu shot, this was only done for Eden. Eden will often tell us "no pokes today" or "zero pokes" we were glad today it was us instead of her! We only wish that we could take all of her pokes.

Tomorrow we are back at the clinic and due to our good results last Friday we will only be there for labs and chemo via her port. No spinal or bone marrow! So much to be thankful for.

Kurt found himself making mashed potatoes for breakfast! Eden had discovered a new love for mashed potatoes after our dear friend Eva had made them for us earlier in the week. So her breakfast consisted of avocados and mashed potatoes. These are some sort of cravings.

As you pray:

-Please pray for Jenna, who is back in the hospital with a fever
-Pray that Eden continues to respond well to treatment with minimal side effects
-Praise God for all the blessing he has given us. We continue to see Gods grace and protection.

Thanks to all that have been supporting us in so many different ways!
Love you all

What next????

2009-01-28T23:05:00.006-06:00

Eden's food cravings are changing daily and what she liked two days ago is no more . . . last week it was cottage cheese by the container, Monday and Tuesday it was avocados and today she was requesting pizza. It is funny to hear her request even at 4 am. We have given up trying to guess what she will want next.

Eden had a great day! Much more like our little E. She actually seemed interested in playing which is the first since last week and she hasn't stopped talking. She just makes us laugh with all the things she comes up with.

Friday is our next day at the clinic. We are unsure of all the procedures they will do at that time due to her awesome results last Friday. We are hoping that they do not have to do another bone marrow but are anxious to have hear that she has 0% remaining. We are glad we are not in control.

Day 11

2009-01-26T21:19:00.002-06:00

Today marked day 11 of treatment for curing Eden's Leukemia. Eden had a good, not great, day today. Eden continues to be quite content being held, watching movies or sitting reading books. That may seem normal to outsiders, but for Eden, sitting in one place for very long is not normal. Her play kitchen has not seen much activity lately, but she constantly is requesting to "go to kitchen". Dad asks, "why, are you hungry AGAIN?" To which she replies "no, help mommy". "Mommy coffee". Dad asks, "is mommy making coffee?" Eden says "yes, coffee hot". The cancer sure hasn't taken any spirit away from the little girl, that's for sure!

Even though last Friday's test results were encouraging, we ask that you continue to pray for Eden, as this treatment protocol is going to continue for a minimum of two years. We also ask that you pray for us as we make decisions and adjust to our new "normal".

We very much appreciate everyone keeping Eden in your prayers! There is power in prayers.

Cottage Cheese

2009-01-25T21:30:00.002-06:00

Eden has graduated from requesting "cheese", and now wants "cottage cheese" (one in the same). Speaking of cottage cheese, the dairy industry has to be pleased with our commitment to keep their doors open during this economic downturn, as she also ate half a quart of yogurt this afternoon along with her usual cottage cheese . . . gotta love the "roids."

Eden had a okay day today overall. Obvious negative side effects are not yet noticeable, however, she is somewhat lethargic during the day - we watched Letter Factory several times today (aka "frogs"). "Rella" didn't even make it into the DVD player once today!!!

We had some special visitors today at our house, one of them brought Eden a squirrel feeder that spins when they climb aboard to eat some corn. Eden will be thrilled to watch the spinning squirrels as they eat. Another visitor was her friend, Molly the only one not asked to Germ-X before entering. Molly is Jake, Becca, & Ethan's dog. Eden loves it when Molly can come over and play and we are thankful that Jake & Becca are so gracious to allow Molly to spend time with Eden.

Selena asked Eden last night which jammies she wanted, pink or green, her response-----CY! Just goes to show, it takes more than a few rides in a Hawkeye wagon to convert a true Cyclone Fan!

Thanks for the prayers . . . please don't stop praying.

Awesome News

2009-01-23T15:25:00.006-06:00

Thank you for your prayers!

Eden had her first outpatient chemo today and all went well. The wonderful, amazing news includes her test results. We were shooting for less than 5% cancer cells remaining by next week. Well, after waiting and praying and praying and waiting for the results, we were informed that she is at 3%!!!!!!! This is a huge praise for us as it shows us the chemo is working. We really believe that this is God's grace! Also, her spinal fluid tested cancer-free still! While this is the news we have been praying for, it does not change the course of treatment. She will continue to receive her "pokes", oral, and IV chemo.

We were not quite sure how Eden would react to our return trip to the hospital today. She was not allowed to eat anything until she was finished; but, she worked the crowd. Anyone who came within reach, she requested "cheese" from. She did eventually polish off nearly a tub! In her usual style she was not only quite chipper but also had a memory like a steel trap. When she saw beloved Donna (developmental specialist from our last clinic visit) Eden's eyes lit up and she immediately requested "toys". Eden has seen many of you over the past week (thanks for the visits and care); she remembers and has had a positive experience overall.