Phoebe was taken to Children’s last night around 1 am. Her sodium came back at 164, extremely high again. This was the issue we had last week when she was admitted. Her Vitamin K is low as well as her Chloride. Her kidneys are not functioning properly and not absorbing the vitamins and minerals her body needs and that is messing with her water and sodium levels as well. Poor electrolyte balance contributes to heart issues and she is experiencing soem of that as well. She is weak and just doesn’t feel well. Thank you for continuing to lift up our girl. I will update again when I know more.
~Amey

Asking for prayer tonight. Phoebe and Nathan are in the E.R. at TMF here in Tyler to get comprehensive labs drawn. She slept only an hour and a half last night, which is much less than her usual 5 or 6 and she seemed agitated most of the night. Today she seemed just “okay” but as the day wore on she began to appear more bloodshot in the eyes and she was droopy and didn’t seem right. This is the first time we have taken her to the E.R. here in Tyler and we are a little nervous about having her port accessed in a new place, especially after the fiasco the other night in the E.R. in Dallas. Please pray she will get just the right person for the job so it will be as quick and painless as possible and also that we can find out what is going with her so she can feel better. She goes in Tuesday for more chemo which is hard to believe considering all the time we’ve spent in the hospital this round. Hopefully she will get to spend this weekend at home with us….
I will post an update when we know more.
~Amey

Phoebe got to come home last night. The doctors peformed a couple of heart monitoring tests that showed no real issues. They suspect that Phoebe’s kidneys are not absorbing enough Potassium and that the lack of Potassium caused her heart to skip beats and have an abnormal pattern. Kidney issues are part and parcel of heavy chemo regimens and often times patients end up needing dialysis during treatment. We are not to that point yet and praying that we won’t get there. Fortunately the kidney issues usually repair after treatment has ended. She was given Potassium and her DDAVP dose was altered a bit to better balance her fluids. She was also given platelets and 2 blood transfusions.  She is still weaker than usual and not wanting to walk or get up much. This round of chemo really took it out of her.

Today Phoebe is having her labs done in Tyler for the first time. We have been meeting with care providers trying to get her therapies switched over and get services for her here in East Texas. We just had internet turned on today at the house, so I will be able to update more frequently now. We are enjoying our new home although unpacking has been difficult and slow-going with Phoebe’s needs. We have been so blessed by our FBC Lindale family and our YWAM family who spent time, energy and finances to help get our house ready for move-in and who shared the man-power to physically move us. We have truly come home to family and community and we are so humbled and blessed to be so loved and taken care of by the body of Christ.

Thank you for praying for us! I will post pics as we get settled in.

~Amey

Feeling (and looking) like I got run over by a train this morning after our night in the ER. Phoebe got platelets, potassium, and extra fluids. She had some irregular heart rhythms that were disconcerting and her heart rate is still high. Her blood pressure is a little on the low side and she is doing a lot of sleeping. Please continue to pray for Phoebe as she is not out of the woods yet.

Tonight finds us in the E.R. with Phoebe. This is the first time we have made the trip from Lindale to Dallas for an E.R. trip since our move on Monday. Phoebe finished a very strong round of chemo last week and it has completely knocked her counts down. Over the past few days we have been trying without much success to unpack boxes and get settled in our new home in Lindale because Phoebe has not been feeling well and has needed constant attention. Nathan took her in for a blood transfusion on Tuesday and she felt a little better when she came home that night, but in the past few days she has become progressively more weak and started showing deep, dark bruises on her injection sites.

We called the Oncologist today to talk about Phoebe’s symptoms and he felt that Phoebe almost certainly needed a platelet transfusion and that we should come to Dallas. The only part of Phoebe’s treatment that will be done in Tyler is her regular weekly labs. Or, should an emergency arise, she would be taken to Trinity Mother Francis hospital in Tyler, stabilized and then transported to Children’s in Dallas for treatment. They simply do not treat pediatric oncology patients in Tyler and Phoebe receives continuity of care here at Children’s so we will be driving back and forth quite a bit.

Tonight was a bit rough. I brought Phoebe in around 5:30 pm and five hours later she had had two separate nurses try and fail to access her port. Blood was all over her dress and we were both in tears. Phoebe is always so brave during these times and she was done crying before I was.  Seeing her hurt and the endless pokes and the feeling sick and weakness and vomiting and mucositis and all the effects of the chemo just does me in. At times I feel like I’m losing my ability to bear up under the stresses of chemotherapy and it’s effects on Phoebe. I feel incapable of seeing her suffer any more. If I only had an ounce of the grace Pheobe possesses through all of this… She is such a miracle and a delight.

Around 11 pm we finally got one of our favorite Hem/Onc nurses to come to Phoebe’s room in the ER and access her port. Nurse Julie was quick and kind and had that port giving blood within seconds. I really am so impressed with the Oncology nurses and many of them feel like friends. I was so thankful for Julie tonight and so was Phoebe. Phoebe’s labs came back showing that her platelets were extrememly low and her sodium was a high 159. So, we are being admitted for an overnight stay to receive platelets and get her electrolytes regulated. As I write, it is 1 am and we are still in the ER waiting for a room to come open.

We are enjoying our house so much and I really wish I could post about that tonight, but I am too tired. We have been so blessed by our friends and family and church family and we are looking forward to being all settled in. Thank you all for praying for us and for Phoebe. I will be able to update more frequently when we have internet access at our house.

~Amey

We are sitting in the hospital waiting to be admitted. In about one hour Phoebe will receive chemo through a spinal tap. Unfortunately, that requires her to be sedated. The rest of the week she will be in-patient receiving IV chemo.

It’s hard to explain how difficult it is to take her in for these kinds of treatments. I would expound upon that a little more, but I’m not as in touch with my “feelings” as Amey is. : )

Tomorrow afternoon we close on our first home and we will spend the next three days repairing, painting and getting it “Phoebe ready.” Our YWAM family and First Baptist Church family are really coming along side us. It both humbles us and blesses us to be apart of these amazing communities of believers. What would we do without the body of Christ!?

-Nathan

We got the house! I mentioned a property we were looking at in East Texas back in August in one of my posts, and I am happy to announce we will be moving to Lindale in just a couple of weeks. After 12 years of marriage, 4 babies, lots of traveling to and from Latin America and living for 3 years in Mexico, we are putting down roots and purchasing our first home! We are excited and yet nervous to be moving away from Children’s Medical Center Dallas, and to be heading back to our friends and family in East Texas. I felt led to write about what this move means for us and quite a bit about ministry, but I turned out THREE pages of stuff and found it fit better on our family ministry website. So here is a (not very great) picture of our house-to-be:

And if you want to read my ramblings about home and ministry, you can find that here:

www.familyafair.org

Gratitude Abounds,  ~Amey

It’s true, my spirit has been quiet these past weeks and you have not heard much from me.  A heavy blanket of sadness has settled upon me as I have become overwhelmed and only yesterday did I begin to peel that blanket off.  Too many AT/RT families losing their babies, too many short nights and long days, too much sickness in our family and time apart from my husband and falling behind on grocery shopping and too many doctors appointments and a future yet filled with them. And it all just took up residence in my heart like an unwelcome visitor that left his dirty laundry on the floor and the sink full of dishes.

And each moment became drudgery and the thought of getting on this blog and expelling the contents of my heart seemed like a cruel punishment for those who would read. When you don’t have anything nice to say, don’t say anything at all, right?  And then yesterday’s counseling session was so rich, and I was reminded of His faithfulness and how I need to recount it to myself day by day. And here goes…

Jesus,

You scooped me up out of my mire at 21 and saved my life from drug and alcohol addiction.

You blessed me with a “Paul on the road to Damascus” conversion and I’ve never looked back. I understand now what a treasure that is.

You lit a fire under me for world missions and gave me a purpose greater than myself.

You spoke Hosea 2:14 to me when I arrived at the YWAM base in 1998; “I will draw her into the wilderness and speak comfort to her.” And you did. And you still do.

And then there was Nathan; best friend turned husband and Your selfless love embodied in a man who loved me like You love Your church.

And Benjamin and Averic and Deacon and Phoebe and the dream to be a mother realized and embraced. Oh what a gift!

And the adventure of it all, thank You for the adventure and the crazy trust in You that was developed through it all.

And how you brought us home to the states because you saw that tumor growing in her sweet little head when we could not.

And how she is still “Phoebe” despite the seriousness of that brain surgery. Thank you Jesus…

I look at the video of her sepsis and think, “was I in denial? I seemed so ‘okay’ during that time….and she was so close to heaven.” And then I understand the enormity of Your grace and how it was a supernatural buffer that allowed me to get up and do what I needed to do for her each day. Thank You…

And for how this crisis has purified the ‘issues’ of life. What’s really important is crystal clear and all the fluff can go by the wayside and that helps us live better.

And this new sweetness in my marriage as we traverse the depths of grief…old souls we have become and quickly and this is the stuff of “for better or for worse”…

And for hope beyond the grave, and an eternity with my girl no matter what… thank you that this life is not the only one..and for hope.

And for my devotional reading this morning that went straight to my heart;

“The soul that is always lighthearted and cheerful misses the deepest things of life. Certainly that life has its reward and is fully satisfied, but the depth of it’s satisfaction is very shallow. It’s heart is dwarfed, and its nature, which has the potential of experiencing the highest heights and the deepest depths, remains underdeveloped. And the wick of its life burns quickly to the bottom, without ever knowing the richness of profound joy.

Remember, Jesus said, “Blessed are those who mourn” (Matthew 5:4). Stars shine the brightest during the long dark night of winter. And the gentian wildflowers display their fairest blooms among the nearly inaccessible heights of mountain snow and ice. God seems to use the pressure of pain to trample out the fulfillment of His promises and thereby release the sweetest juice of His winepress. Only those who have known sorrow can fully appreciate the great tenderness of the “man of sorrows” (Isaiah 53:3)

~ Streams In The Desert, L.B. Cowman

Let Your praise be continually on my lips that I may never forget the ways You have shown Yourself faithful….

~Amey

http://www.youtube.com/watch?v=VWuDZ0az-c4

John Bokma

Phoebe had a good day for the most part. Her hemoglobin levels and blood counts were higher today than yesterday which is a step in the right direction. Her urine culture was negative and we are waiting for the results on her nose swab. She was put on isolation today because she is still coughing and sneezing, but she has not  had fever so that is good. Please pray that whatever her body is fighting off will clear up soon.

Thank you,  Amey

Tea Party in the hospital

After feeling pretty puny yesterday and a few low-grade fevers, Phoebe was taken in to the hospital this morning and is now being admitted. She has had some mild coughing and a runny nose and has been complaining of tummy pain, eye pain, and that her port is hurting. Please lift her up today when you think of her, it’s always a bummer to have to be admitted between chemo rounds. Thank you all for your continual prayers and kind words.

~Amey

Phoebe watches cartoons after being admitted