Home on the Horizon

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

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

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

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

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

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

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

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

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

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

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?

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.

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

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.