This picture is a classic example of you. Sitting on our couch, in our quirky and uniquely decorated living room, dog by your side and a coffee mug within reach while you blog.

I see the amazing woman that is my best friend. I see the woman of God that you have become from that girl you used to be. Such a change has only come from the indwelling of the Holy Spirit. I see what an amazing passion you have to selflessly serve your boys in homeschooling and continually dying to your own dreams to be able to be a mom with joy and love.

I see how you understand phoebes endocrinology issues in a way that most endo docs don’t. That is a testament to how God has prepared you so well, not to be the ultimate person, but the perfect mom for Phoebe and the boys. I see HE created you and gifted you to meet the specific needs of each individual in our family; all you need to do is allow Him to do it though you.

I see “fixing” Deacon’s emotional issues seems impossible, and truthfully it is on your own. But HE has prepared you and is preparing you to do and be exactly what these boys need; a mom that will allow HIM to heal them THROUGH her, not necessarily because of her.

I see, as you let HIM, HE will use you to show them, and the world, how to suffer an go through trouble as a Christians should and help them to come out of this stronger than ever. Because we will not grieve as do those who have no hope.

I see YOU, more than anyone else I know, are equipped to go through what we are going through and to help to bring our family through it while bringing GLORY to God. Not because of you, but because you simply allow HIM through you.

I want to committee to you, to be everything God intended me to be as a dad and husband. I will fail, but I will try and re-try to be the husband you need me to be. I know I cannot accomplish anything close to this on my own and I have been and will continue to pray that HE will do this through me.

I see a girl who has so much to give to her family, friends and to the world.

Happy Birthday Nuzzle, you are my best friend…

-Nathan

Grief is a strange animal. One moment I’m fine, the next I am blubbering to Benjamin on the way home from the grocery store about Phoebes and life and how it will change. Most days are good; I try to stay in the moment lest I use up these precious hours with pre-mature self pity and sadness. I know it’s God and that yes indeed His grace IS sufficient, because it oft occurs to me that I should be plummeting into the depths of despair right now. There is a super-natural buffer that He is manifesting in my life that keeps me even-keeled and from teetering over the precipice.

I know the precipice is there, but I’m not going there today. Not while she’s still here.

There is plenty of time for that later.

Today was rocky. We took her to the zoo. She loves animals usually, and getting out and about, but it feels like the time for these types of outings might be past us now. She is easily upset, emotional, and sensitive to light and noise and activity. She stopped for the birds and we enjoyed some giggles in the bird habitat where they flew all around us. Patrons can buy bird-seed on a stick and the birds will allow you to hold them. She laughed and squealed and ducked when birds flew close by.

I will see this moment in my mind’s eye on some distant day when I take the boys back to the zoo and step inside that bird habitat again.

Thoughts like that punch me in the gut every now and then. The going on without her, and yet seeing her everywhere I go. Stopping at a gas station on a family road trip…Nathan takes the boys to the bathroom, me and Phoebes go together..now I will go alone. The only girl.

This is where my thoughts take me, so I try my best to stay in today, in this moment. For each day has enough trouble of it’s own. And there’s eternity to spend with her and I hang my hat on that.

We left the zoo early, she was shaking due to low sodium and she was wanting me to hurry past all the animals in her desperate quest for relief from the pain. Her noggin is bothering her as the pressure grows. She doesn’t like to lie down and has a difficult time getting comfortable when she does. We have given more pain meds today than we have before and she seems to respond well to that so far.

Next week we will start palliative radiation to hopefully slow down the tumor growing in her brain. This is not a curative treatment, nor can it be for Phoebe. This treatment is to make her as comfortable as she possibly can be. Ten days of short radiation sessions have the potential to reduce her pain and pressure in her head, shrink the tumor a bit and/or slow down it’s growth and give us more time. I say potential, because not all of those things are certain to happen, but it is definitely worth the try. She should have minimal side-effects from the radiation, maybe sleepiness, but it should be fairly uneventful.

This will not damage her cognitive skills..it would over years, but not in this instance. So, we will be travelling to and from Dallas and/or staying in Dallas for some time during the next two weeks.

Deacon started play therapy/counseling on Monday and really enjoyed his counselor. The big boys will receive counseling too at some point, but Deacon is really struggling and doesn’t know how to express it, so we wanted him to go right away. Please pray for his grieving little heart. He pushes her away and feels guilty about it, it’s just so much for a five year old to deal with.

Nathan and I could use prayer too of course, for peace, for wisdom in how to talk with the boys, for good communication, and to be on the same page in regards to Phoebe’s care. It’s all very messy at times, and I literally forget why I walked into a room, or what I am doing, or what I am saying several times a day. I have read this is typical, but it is frustrating not being able to focus on anything.

Thank you again, to all of you, who mow our yard, bring us meals, send Phoebe cards and messages of love, help out with the boys, and write encouraging notes to us. All of this is so appreciated, please know how surrounded we feel, and supported.

~ Amey

All things considered, Phoebe is doing very well, just headaches and some swelling from steroids (and ice cream). Please continue to pray for her healing and comfort.

Spent the day in Dallas. Phoebe had an appointment and had to get fluids and IV antibiotics for her UTI. This is the same medicine that damaged her kidneys in January, but the only one that will be effective in knocking out the infection. We have some difficult decisions to make over the weekend..praying for guidance. She has had 2 great days in a row, and THAT is a gift

-amey

We are so grateful for the outpouring of love and support everyone has shown to us these last 2 weeks. Phoebe is demonstrating some symptoms of her illness that make her easily irritated, sensitive to noise and light and give her the desire to sleep a lot. She was also diagnosed with a UTI today which causes frequent fevers. All of this makes it difficult to have company and also be there for Phoebe in the way that we need to. Please know that we will keep you posted about how she is doing, and please respect our need for quiet family time as we soak up our precious girl.

Thank you
-Amey

Below is a link to a local NBC news report about Phoebe and her birthday:
http://www.ketknbc.com/news/east-texas-girl-fights-rare-cancer

Phoebe’s birthday party was more than I could have ever hoped for. It was so perfect and Phoebe soaked in every bit of love and attention. I have no idea how to begin to thank all the individuals from our church and local ministries that made this last minute birthday so special.

We are back at home, and Phoebe is feeling better and better. We have a couple of new pain meds on board for her head and back pain that seem to be working well so far. We are transferred over to hospice care now and they will meet our needs at home. Leaving the hospital today we traveled through a tunnel of tears as we shared hugs with the D6 nurses whom we have come to know and love and who love Phoebe. And then we said a tearful goodbye to Christy at the front desk and the pharmacy lady who always speaks Spanish and we drove away….

It’s been a good day. As I type, I’m watching Phoebe make Play-Dough cookies and say “BEEP! BEEP! BEEP!” as she mimics her med machine. I can’t believe this is the same girl I was trying to soothe at 6:30 this morning while she was hallucinating and crying and agitated. The antibiotics are working and she is feeling better by the hour as she recovers from the C-Diff infection in her bowels.

Monday afternoon her fever was 106 and wouldn’t come down, she hadn’t had a bowel movement in several days, and she had quit urinating. Her tummy blew up and was hard and she was miserable. Given her most recent diagnosis of tumor recurrence, one of the first presumptions was that the tumor on her spine had compressed the nerves that control her bladder/kidneys/bowels. And often, people will quit urinating when close to death and we were told that she was actively dying.

When she became inconsolable and then lethargic we feared the worst, but knew we had to get her bladder emptied and take some pressure off. This is what we did at the hospice center in East Texas. While there, it became apparent that she needed more assistance than was available at that moment, so we went on to Dallas. An obstruction was found in her bowel and a tube placed down into her stomach to remove air and fluid that had built up and give her some relief. During this time she had a couple of diapers that concerned me. We were familiar with c-diff but Phoebe had never had it.

They cultured her for C-Diff and it was positive, and it made itself quite apparent over the next several hours with trip after trip to the bathroom. The antibiotics were started and immediately her tummy deflated and got soft again. Poor baby. She has been sleeping a lot and yelling at her brother, Averic when she sleep-talks. This of course makes all of us laugh. Today, the swelling in her face and eyes went down considerably and she perked up several times and laughed and smiled and played.

What a relief.

Phoebe got to travel in an ambulance today. We had a consult with a radiation oncologist at the radiology clinic to discuss radiating the tumor on her spine to give her some relief if the tumor was pressing on her nerves and causing discomfort. Based on the location of the tumor, which is really more of a nodule at this point, he thinks her recent back pain has been due to the C-Diff infection rather than the tumor itself. We will evaluate again after the c-diff infection is cleared up.

There are some other options in the future for using radiation as a palliative measure for tumor induced pain she might encounter, but I don’t feel like discussing those tonight, or with the general public. We get a lot of well-meaning advice, but honestly in our position, advice can be offensive at times. It implies that we have not done enough research, or looked at other treatment options, or considered other ways to see Phoebe healed. None of this is true. We researched our hearts out for treatment options and locations, we made phone calls, yes, even to Burzynski, we juiced , we used supplements, we looked into Gerson, we made ourselves crazy trying to make the best decisions for Phoebe. So, please, do not share advice. The cancer road is littered with “what if’s” and we just can’t go there anymore.

It looks like we’ll be headed home tomorrow and trying to work out a relationship with hospice that will best meet Phoebe’s needs and the needs of our family. Our hope is for her to be at home as long as possible, manage her pain in a way that enables her to enjoy life, and try to do as many fun Phoebe-things as we can. I don’t have the time or energy for the details just yet, but God’s peace and presence are with us in a real way and it is awesome to behold. Phoebe is precious as ever and I am so thankful she is feeling better tonight. My prayer is that her birthday party will happen in grand fashion when she is feeling up to it.

Thank you to all of you who have been visiting, praying, sending balloons and cards, cleaning our house, watering our garden and taking care of our animals. And thank you to those who have taken our boys out for some fun to give them a break. Our friends, fellow YWAM’ers and church family are a lifeline for us and we love you all.

With gratitude, Amey, for all of us, especially the Phoebster