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!
Sunday, August 9, 2009
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.
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