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.

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

-Give us peace that that the surgery will go smooth

Here is a picture of Eden and Jenna at relay for Life last weekend.

Thanks for praying for Jenna!

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.

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.

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.