Phoebe and I (Amey) came home late this afternoon. We are still not sure what caused her sustained fever since all of her labs were good and she had no other symptoms. Unfortunately, whenever Phoebe has a fever or her body seems to be fighting off an infection we have to triple dose her steroids to give her extra cortisol support or else she could crash and become unconscious or unresponsive. So, the yucky side-effects of the steroids have begun; lots of weeping, ultra-sensitivity, tantrums, frustration, and a voracious appetite. They also interfere with her sleep, so we are in for a long night.

Otherwise, she has been pretty content at the hospital. She rolled onto D6 (the oncology floor) and was given a superstar’s welcome by all of her old nurses and hospital staff. She ate up all the attention and proudly showed off her new hair and eyelashes. She was extra excited when her Mammaw showed up with tortilla chips and snuggles and I think the whole stay felt like a fun overnight visit to see lots of folks she knows and loves. She’s not even phased by the hospital and that just has to be God’s grace in her life.

We spent the morning in the playroom making crafts and waiting to get the okay to go home and we were on the road back to East Texas around 4:30. Please pray that these steroids will filter out quickly and give her a break, poor Phoebes is a bit of a wreck tonight.

Thank you for praying for us and thinking of us!

Amey 

Phoebe is doing much better this morning and we may go home as early as this afternoon. Her sodium is still a bit high And we’re still not sure why she is struggling.

But Phoebe is singing “Frère Jacques” and in high spirits! Thank you all for you quick responses and prayer. We will update you this afternoon.

-nathan

Phoebe is having a rough day. Phoebe had fever last night and was admitted to the ER. After sleeping most of the day in the ER, her doctors admitted her to the oncology floor. She is having a hard time staying awake and her electrolytes are in bad shape (potassium is very low, chloride is high and sodium is very high). Her kidneys seem to be acting funny as well.

We are not certain what is causing it, but at this point sepsis is a very real concern as she is still immune compromised to some degree. For those of you who remember, when Phoebe went septic last year, this is how it began.

It is very strange to feel that old familiar fear and worry spring up in my gut. After 3 months of Phoebe doing so great, I guess I started to let my guard down. Our Phoebe has and always will be in God’s hands and we trust Him fully. As always, “we walk by faith, not by sight.”

This was the first time she has been back to the oncology floor since her last chemo in March and it is obvious that Phoebe is still very much loved…

Please pray for our sweet girl…

-nathan

We’re on our way to Dallas this morning. Phoebe has been running a fever since last night so we have to take her in to draw cultures and make sure her port is not infected. Praying for a quick and easy port access.

-amey

Phoebe checks out the chickens after church in her pretty pink dress! Doesn’t get much sweeter than that!

-nathan

This is what we’ve been up to…..

Phoebe is wonderful! We have been very busy as you can see, doing all of the things we love and have missed dearly while Phoebe was in treatment. Nathan has been working on our vision statement and timeline for the 3rd world agriculture training program we are developing and I have been busy with home schooling and working in the garden. We just returned home from our YWAM annual staff conference in Grapevine and we had a great time. The boys attended kid classes while Nathan and I enjoyed a weekend of good teaching and fellowship with our fellow YWAM’ers.

Phoebe had an Oncology check-up and an endocrine appointment last week and everyone was very pleased with her progress. Her hair is so sweet and fuzzy, like a little baby-head I just can’t kiss enough. She has stopped eating during the night which is an answered prayer and she seems to be sleeping better the majority of the time. Weaning her from the ng tube and teaching her how to drink despite her lack of a thirst mechanism is a work in progress. Ben and Averic both have birthdays coming up next month and then we head to Florida at the end of June for a Lighthouse Retreat for pediatric cancer families. It is so freeing to be able to travel again and make plans without worrying about Phoebe’s condition. I will never take that for granted again.

Thank you all for continuing to pray for and think of our family. We are in a nice season and enjoying living again outside the walls of the hospital.

Love, Amey

Phoebe gets all dolled up to go get labs drawn. She looked so cute, i thought you would all want to see.

Phoebe has o get labs drawn 2-3 times a week as a part of managing her sodium.

-nathan

Here’s my beauty….sorry it’s a little late She’s doing great!

She looks so pretty with eyelashes. I am a little shocked every time I look at her because it’s been so long since I’ve seen her with eyelashes and eyebrows, it almost looks as if she’s wearing make-up! And this is where you want to see a picture, but I don’t have one at hand. I promise I will get some pics up by tomorrow. Life has been blissfully busy lately. We are so thrilled to have a life away from the hospital and ER runs and Phoebe feeling poorly, we have been making up for lost time. Each day after we finish school, we are working on setting up the farm. We have had a great turn-out of people showing up to volunteer their time and energy to help us get started. The end goal is to have a training center for third world agriculture along with homesteading skills workshops and family camp weekends.

We are blessed to have a great church body and wonderful friends to come alongside of us during this new season. Some of the sweetest fellowship happens while preparing garden beds or pulling weeds. The boys have enjoyed the influx of families and kids coming to play and we are slowly but surely beginning to see the vision become a reality.

Phoebe has been feeling great and often comes to sit in her lawn chair and watch me in the garden. Her stamina still isn’t 100%, but she is making progress. Her feet often hurt because of the way she walks these days. She lost quite a bit of muscle in her legs during her sepsis episode and it has caused her to have knock-knees and over pronate. In other words, she puts her weight on the inside (arch) of her foot and it causes a lot of discomfort. We are looking into getting her another pair of orthotics that fit lower on the ankle but address her over-pronating.  

Her kidneys are still dumping potassium and her liver still sustains some damage, so please pray for those two things. Life is sweet these days, busy and full of activity and all of the things we usually take for granted. Joy is in the small things that make up a life and we are soaking it all in.

Thank you all for praying for Phoebe and continuing to ask after her,

~Amey

Phoebe had a 15 minute seizure this morning and temporarily lost movement on her left side. She had a hard time coming out of it. At the ER now.

MRI results from yesterday came back clean! What a bittersweet morning! Rejoicing together in the ER… It’s been that kind of day…

-nathan