I suppose part of a “suffering” experience is feeling far away from God. Lately I have often thought about Jesus in the garden of Gethsemane, his petitioning his Father to “take this cup from me”, the feeling “forsaken” on the cross…and of Job when he cried out “If only I knew where He might be found!” I have identified so well, with these sentiments, as well as some of David’s Psalms these last several months.

Scarier than feeling pain, is feeling nothing, I think. For several weeks now I have felt just that. Maybe this “nothing” is God’s grace, a survival mode of sorts to be able to function in spite of heavy circumstance. Whatever it may be, it has been a strange place.

But I can already see the fruit. My empathy-meter has reached an all time high. I am slow to judge, and quick to identify with another’s pain. I am more forgiving of weakness in others as I have experienced it myself. And I “see” with new eyes, with His eyes, all of the hurt around me.

It has been a hard pill to swallow, all this coming to terms with things I never thought I would have to consider…all this sharing of Phoebe and realizing that she’s really God’s, I mean really, really His. And I have scraped bottom more than once. I have completely lost my marbles in a tiny ER room and found myself incapable of stopping the tears despite embarrassment. I have had crazy visions of pulling all the tubes and wires off my daughter and just making a run for it to God knows where.

I have had words from the Lord that left me soaring for days and moments when I just know that everything is going to be okay. I have laughed so hard I cried at Phoebe’s silly talk in the wee small hours and I have let those tears become sadness in the very next moment because I can’t bear the thought of losing her.

It’s been enough to make a girl feel like she’s a few french fries short of a Happy Meal. And then with an undetectable, subtle shift, something breaks open. A small crack of light peeks through the nothing and I can feel a little bit of joy. I see the purpose in the nothing for the first time. It hasn’t all been for naught. And that’s as far I can see right now, but it’s something, and it feels a little bit like hope.

One of my favorite online devotionals is http://www.adisciplesnotebook.com
and this is what I found there tonight;
God’s trusting child may say in times of trouble:

FIRST: He brought me here; it is by His will I am in this strait place: in that will I rest.

NEXT: He will keep me here in His love, and give me grace in this trial to behave as His child.

THEN: He will make the trial a blessing, teaching me the lessons He intends me to learn, and working in me the grace He means to bestow.

LAST: In His good time He can bring me out again—how and when He knows.

Say: I am here—
(1) By God’s appointment.
(2) In His keeping.
(3) Under His training.
(4) For His time.
Andrew Murray (1828-1917)
~~~
And call upon me in the day of trouble; I will deliver you; and you shall glorify me.

Psalm 50:15 (ESV)
Grateful, Amey

Just wanted to let you all know Phoebe was stable enough to come home tonight. Amey will write an update after she gets some good hibernating done.

It’s often said about the matriarch of a family how she holds everything together and is someone who everyone can lean on and count on. The rock that holds the family together.

I have never really thought about Amy like that before. I have always thought she was an amazing mom and a great wife, but over the last couple days I have seen her in a different light. This experience has transformed us all in so many ways. But I feel like I have been watching Amey change from a young mother to something so much more.

It’s hard to explain, except to say that when it was just me and the boys here this week, there was a palpable sense that our nucleus was missing. Her foundation in the Lord and the truth of what that means practically in daily life, while going through hardship, has been an encouragement to me and so many others. Warts, pimples and all, she has not been afraid to share her faith, struggles and fears with the world.

And let me tell you, it’s not easy putting yourself out there for the general public to see your struggles and fears, your imperfections. I certainly don’t do it. I prefer to remain silent during the hard times.

Beyond theology, doctrine and saying or doing the right things, Amey has embodied the reality of what Christ manifest in our lives looks like. It’s not always perfect and it’s not always pretty, but at its root is love, peace, joy and most of all brings glory to God.

-Nathan

We’re still here…Phoebe is still having severe diarhea, tummy pain and her bottom hurts quite a bit. We are giving her Ativan, Benadryl (to stop the itching) and Morphine to alleviate her discomfort but there is no real concensus as to what is causing these issues.

The Potassium seems like the obvious culprit to me, but I am told it shouldn’t cause this to this degree. The diarhea of course is messing with her fluid balance and sodium and electrolyte levels, so we are chasing sodiums and trying to keep her hydrated as best we can.

Her ANC is coming up slowly, and that’s good because it means that we should start to see some healing and recovery and hopefully her bowel issues will improve. Thank you for praying for our girl…

-Amey

Phoebe snuggles with her Grammy

Phoebe is still having a rough go in the hospital. Yesterday there was a mix-up in her orders and her Hydrocortisone was dicontinued. Well, Phoebe is cortisol dependent and can not live without it, so by yesterday afternoon she was floppy, distant and fading. Her heart rate was accelerated and her sodium was very high and thank God they finally figured it out before she crashed. Needless to say it was a rough day.

Her body is still not absorbing Potassium which is most likely a kidney issue, and that could continue for weeks, or months, or years or just suddenly correct itself. I constantly have to remind myself that people can live with potassium supplements but they can not live with AT/RT. People can live with Diabetes Insipidus but they can not live with AT/RT…etc.etc. Chemotherapy is a double edged sword.

Right now she is receiving her second blood transfusion and yesterday she received platelets. Her ANC is 40 today which is still pretty low, but at least on the upswing. We will be here for a few more days until her counts recover and she is in better shape. Thank you all for continuing to pray.

~Amey

Phoebe was admited to the hospital today. She spiked a fever, had an elevated heart rate, and her labs showed that her ANC (Advanced Neutraphil Count) was nearly zero and her hemoglobin was at a 7. She received a blood transfusion and is beginning to perk up now and feel hungry. Thank you for praying today. She is not out of the woods yet, as we are waiting on blood cultures to test for infection since her fever maintained itself rather than quickly coming and going as do her central fevers. I will post more when we know more.

~ Amey

Taking Phoebe in to the hospital this morning for severe stomach pain and quick, shallow breathing. Please pray that we get answers. Often times she has pain that never really gets addressed becaused there is no obvious reason for what’s causing it.

She has been on a steady dose of Ativan the past few days to ease her tummy, but I want to see her get some serious relief.

Thank you, Amey

I just wanted to stop in and post that Phoebe is doing okay. It has been a busy couple of weeks and I am wanting to post something more heartfelt about my grandfather, but time hasn’t allowed yet.

Phoebe is a little emotional and having stomach pain right now, most likely from one of her chemo medicines called Doxorubicen. She was up most of the night with pain and when I got up at 6:30 this morning, Nathan had her in the bathtub trying to soothe her. After a round of intrathecal (spinal) chemo and Doxorubicen, it is usually just a matter of days before Phoebe needs a blood transfusion and/or platelets. It just knocks her out.

Friday is Deacon’s birthday and I am praying that we are not in the hospital with her getting a transfusion. Thank you all for praying with us!

-Amey

As quick as she came home, she’s going back tomorrow for the next round of chemo. It’s always sad when she has to spend so much time between chemo rounds in-patient..just makes the going back in all that much more difficult.

Nathan left tonight to stay with Phoebe at the home of some dear friends in Dallas because her intrathecal (spinal) chemotherapy procedure happens at 6:45 am in the morning. I am thankful I got to spend the night with her at the hospital on Thursday and then I just had Deacon and Phoebe to myself Friday and Saturday while Nathan and the big boys were at my parents home for a boys camp-out weekend. It was nice to have some set-apart time with my 2 littles. Nothing warms my heart like Deacon going to retrieve Phoebe’s walker for her or helping her stand up or carrying her water bag for her.

Precious little people…
I always crash emotinally for an hour or two after Phoebe heads back to the hospital for another round. I stay home to school the boys and try to spend time doing things with them that usually don’t happen when Phoebe is home, like crafts or trips to the library. But there is always an underlying sadness that our family is not a whole unit, and often something as simple as finding a random Cheerio on my bedroom floor can reduce me to tears.

I hate that she has to do this. I hate that she begged Nathan to take her home all the way to Dallas tonight. I hate that Nathan had to miss seeing Benjamin earn his first Cub Scout badge tonight. Stuff like that. Okay, I’m done complaining.

For all my hurts, I know there are those who hurt more. My heart is burdened for sweet Piper’s Mommy tonight and the depths of grief she is trudging through. I know that my girl is still here and that my complaints must seem like minutae when stacked against the finality of actually losing a child.

Trying to practice optimism or daring to hope are exhausting at times. I have never had to remind myself so often to look for the blessings all around me. When I do, my perspective changes instantly, but it’s only for a second or two or a minute or five…then I spiral right back into seeing only the battle. This little cycle wears me out, but I have to push through or else I will miss what is right before my eyes.

So, we press on. Please lift up Nathan and Phoebe tonight. My happy-go-lucky husband is weary these days with a soul-fatigue that shows on him. Phoebe is her smiley self but you can see the cloud pass over her when she realizes she’s staying in the hospital yet again. Pray for stamina, distraction, fun, for no nausea tomorrow after her spinal chemo, for her kidneys that are still not great, for an uneventful round of chemo and for wisdom as we discuss things with the oncologist tomorrow.

Thank you all for hanging in there with us..
~Amey

Phoebe in the Hospital waiting room at 6:45am!

Phoebe got to come home last night. Her sodium levels finally came down to a normal number and she is feeling better. Unfortunately, her body is still having a difficult time absorbing enough potassium. Her kidneys are dumping rather than absorbing the potassium and yesterday her Magnesium was low as well. She received IV Magnesium and we were sent home with more potassium supplement.

It is possible that the heavy duty antibiotics Phoebe received for her UTI could have caused this kidney damage. If that is the case, then it is expected that this malabsorption issue will eventually correct itself. If this is from the chemotherapy, then it could be permanent. Please pray for the former.
Phoebe goes in Tuesday for her next round of chemo.

From time to time people implore us to stop chemotherapy. Know that is a thought that crosses our minds quite often because the side effects are so nasty and often permanent. But, lots of people live with ADD and kidney issues and even endocrine issues; zero people live with untreated AT/RT tumor cancer in their brains and bodies. Unfortunately we have the task of chosing between some horrible options. These are decisions no one ever expects to have to make.

On the other hand, Phoebe is not elegible for radiation (a standard part of her chemo protocol) because of the location of her tumor site. Her tumor was seated in the part of the brain that controls your emotions, personality, hunger and thirst and pituitary function. If we were to treat with radiation, we would no longer have “Phoebe”.

We are thankful that radiation is not an option because then we don’t have to live with the possibility that we damaged our daughter in a way that changed who she was fundamentally. The choices that parents of brain tumor patients/cancer patients are forced to make are heart wrenching. Nothing can prepare you for these types of ethical decisions, especially with your own child.

When Phoebe’s chemotherapy treatment is completed in February or March, many of these horrible side effects will abate and her body will have time to heal. Barring a miracle, we will have to deal with her endocrine issues for the rest of her life, but we’ll take it.

Thank you all for praying for our girl and for expressing your concerns. Please know we have wrestled this through and continue to wrestle with these decisions on a daily basis.

Looking towards the finish line,

~Amey

Looks like I spoke too soon. Phoebe had a rough time last night and it looks like we won’t be going home after all. Her hemoglobin went low and she has been receiving a blood transfusion all morning. We are also still struggling to keep her sodium at safe levels before she can go home.

-nathan