Monthly Archives: November 2012

Back to the Hospital

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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

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

Phoebe Home and Other Thoughts

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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

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Trending Down

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We are at Children’s and Phoebe is much better. Her sodium is trending down and we might be home in time for kickoff and thanksgiving with our family tomorrow.

So thankful for Phoebe and her little life that has taught me so much. Thankful for an amazing wife, three beautiful, healthy boys and my family. Thankful for a wonderful church and YWAM family. Most of all, thankful for the grace and peace of a good God…..oh and did I mention football!?

Go Texans!

-nathan

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Back in the ER

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Phoebe spiked a fever this morning so we ended up going to the ER at 4:30am. Her sodium is high and her potassium is still low. They want to admit her, but we’re gonna try to stabilize her in the ER so that we don’t have to spend the night in the hospital.

You know what to do….

-nathan

Latest on the Phoebster

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Phoebe is doing great. She had a rough patch last week, 3 days of crying, frustration and an inability to communicate what was wrong. I cried, th eboys cried, Phoebe cried..we were a mess. Fortunately, her Grammy saved the day and took her home to her house for a couple of nights so Nathan and I could get some rest and recoup.

I’m not exactly sure what she was going through, but I feel like she has every reason to have a 3 day freak-out if she needs to. I forget sometimes that she is probably just emotional because life is tough and chemo is hard and she has a lot of feelings that she is not yet mature enough to process or verbalize.

In any case, she calmed down after some time at her grandparents, and Nathan and I actually got to sleep in the same bed all night long for two nights! That makes 3 nights since we moved in.

Tonight we took Phoebe to church for the first time here in Lindale. So many people already know Phoebe and our family through the blog and the prayer list at our church, so it was nice for everyone to finally get to meet her. We have really enjoyed being able to be with our YWAM family and church family here. Just having that support system has so enriched our lives already.

Phoebe will go for her next round of chemo on the 27th. She will have intrathecal (spinal) chemotherapy this round and that is never fun. She is also still complaining of pain consistent with the UTI infection and I am wondering if she still has it despite the heavy-duty antibiotics. We will have her tested again to see what the problem is. Otherwise, she is feeling good, playing with her brothers, laughing…

On a sad note, we did not get approved for at-home nurse help. We were hoping for some help with Phoebe from 8 am to 1 pm each week day as we were told we qualified for 60 hours of at-home nurse care a week. Having a nurse 25 hours a week would have helped me with home-schooling and allowed Nathan to start work on some of his agriculture projects for the ministry, so we were disappointed to hear that the insurance rejected the request for help. We are now looking into another similar program for at-home help that is not with a nurse and we’ll see how that goes.

The boys are all doing well. Deacon will turn 5 on December 7th and he very excited about that even though I told him getting older was not allowed. He takes these conversations very seriously as he doesn’t want to be disobedient and it’s the seeetest thing ever! I tell him it’s fine, just this once, I’ll let him turn five, but that’s it, no more, and he agrees. I love this boy. He seems to be doing better in regards to Phoebe and I have made a concerted effort to single him out and make him feel special in the past couple of weeks.

Cancer is tough on the entire family and Deacon tends to be a sensitive soul, so my heart aches for him at times.

Thank you for praying for him, and for Phoebe and our whole family. We are hanging in there and enjoying the precious moments we get to share together as a family in our new home.

-Amey

Phoebe enjoying the cool weather

Phoebe enjoying the cool weather