Almost finished!

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 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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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??

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!!!!

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

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.