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!
Thursday, December 31, 2009
Thursday, December 17, 2009
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!
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!
Sunday, December 6, 2009
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.
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.
Tuesday, November 24, 2009
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!!
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!!
Monday, November 16, 2009
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).
Friday, October 30, 2009
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!
Wednesday, October 28, 2009
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 . . . .
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 . . . .
Monday, October 26, 2009
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.
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.
Saturday, October 17, 2009
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!
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!
Sunday, September 27, 2009
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.
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.
Saturday, September 19, 2009
Shirt off His Back
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.
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.
Sunday, September 13, 2009
Glimpses of normalacy?
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
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
Wednesday, August 26, 2009
Rebounding
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!)
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!)
Thursday, August 13, 2009
Home . . .
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!
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!
Wednesday, August 12, 2009
Long Day!!
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.
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.
Tuesday, August 11, 2009
Treatment On
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
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
Sunday, August 9, 2009
we're back - finally
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!
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!
Sunday, August 2, 2009
Cinderella is back!!!!
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!!
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!!
Sunday, July 26, 2009
Weekend spent inside
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.
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.
Thursday, July 23, 2009
Day 16
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.
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.
Tuesday, July 14, 2009
Daddy Day at the Clinic
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.
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.
Thursday, July 9, 2009
July 9th update
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.
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.
Sunday, July 5, 2009
"I made mommy laugh"
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.
Friday, June 26, 2009
enjoyed the week
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.
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.
Sunday, June 21, 2009
Prayers for Jenna
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
Here is a picture of Eden and Jenna at relay for Life last weekend.
Thanks for praying for Jenna!
Monday, June 15, 2009
Our Week
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.
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, June 4, 2009
Thursday
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.
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.
Tuesday, June 2, 2009
Back to reality
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.
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.
Sunday, May 31, 2009
End of May
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!
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!
Monday, May 25, 2009
Memorial Day Weekend
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!
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!
Thursday, May 21, 2009
Friday
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.
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, May 14, 2009
Thursday
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!
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!
Wednesday, May 13, 2009
Treatment On
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.
Have a great Wednesday.
Monday, May 11, 2009
Enjoying the Great Outdoors
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.
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, May 6, 2009
wednesday night
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.
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.
Sunday, May 3, 2009
Good weekend at home
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.
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.
Friday, May 1, 2009
Our Reality
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.
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.
Wednesday, April 29, 2009
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.
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, April 28, 2009
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.
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, April 26, 2009
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.
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, April 25, 2009
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.
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.
Friday, April 24, 2009
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.
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.
Thursday, April 23, 2009
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 -
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, April 21, 2009
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 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!
Monday, April 20, 2009
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 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.
Wednesday, April 15, 2009
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!
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, April 11, 2009
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.
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.
Tuesday, April 7, 2009
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!
Monday, April 6, 2009
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'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.
Saturday, April 4, 2009
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.
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.
Wednesday, April 1, 2009
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.
Thanks so much for continuing to check in on our progress! Love you all.
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