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!)

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!

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.

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

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!

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!!