Phoebe is doing very well, all things considered. She is tolerating the radiation treatments well, although the side effects will primarily begin to show up in a week or two from now. She should also be feeling some relief from the tumor pressure and that should continue to improve over the next 2-3 weeks.

The radiation waiting room is a special place. A sea of broken people; adults of all ages, children, brain cancer, breast cancer, pancreatic cancer. We exchange knowing glances, we learn each others names, we smile. There is solidarity here and I find myself thankful that I can never un-know that such suffering, such valor, exists. It makes me a better person. It keeps insignificance in it’s place.

We have been enjoying staying with my Grandmother and Phoebe is keeping a captive audience with the sweet people in the senior living community where she lives. She never misses an opportunity to spread her joy around or tell an unsuspecting stranger that her daddy snores. Silly girl. It’s hard to fathom a world without her and I try not to.

The boys are having some much needed time at my parents’ house and getting spoiled before school starts for them this next week. We have home educated from the beginning and will continue on this year. I don’t want my boys to miss a moment with Phoebe, and if we are behind come the end of the year, so be it. I know God has provision for us in this season and it will come together.

We are all looking forward to closing the books on this week. Radiation at 6am for 2 weeks is for the birds. It will be nice to get back home and have a more relaxed schedule. We are holding up well, by the grace of God, though sometimes a flash of pain so intense comes over me I can hardly breathe. It’s usually in those moments that I have jumped ahead of God and imagined a life without that sufficient grace. If I stay in the moment, I do well.

Your prayers, encouragement, stories, good works and empathies are a lifeline for us,

~Amey

We are spending the week in Dallas finishing up Phoebe’s treatment. Of course pain management continues to be a constant issue.

Please pray for wisdom and continued collaboration between us, hospice and her doctors that would provide the best possible management of her symptoms.

As always, please pray with ferocity for sweet Phoebe’s healing. More info to come…

-dad

She seems to be tolerating the radiation so far with minimal side effects. She sleeps more than usual. She is often irritable which makes it difficult to take her out without a scene, so for now we are sticking pretty close to home if not in Dallas for radiation. Thank you all for thinking of us and praying for Phoebe. Everyone has been wonderful to our family, and we feel blessed to feel so loved.

-amey

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.