Monthly Archives: November 2012

Drum Roll…

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Phoebe had her MRI today. We left the house at 6am and finally made it home around 5pm. The scan was clean and showed no new evidence of disease!

We are so excited and Phoebe did great, as a matter of fact, she recovered from the sedation better than ever before. Although this is great news, Phoebe has a long way to go and we continue to trust the Lord and lean on all of you.

-Nathan

Phoebe walks out of the hospital under her own power for the first time ever!

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MRI Tomorrow

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We have had a great weekend with Phoebe at home. She has felt pretty good and had a lot of energy. She still complains of some pain from her urinary tract infection, but she receives her last dose of IV antibiotic tomorrow and I am praying that the infection will be knocked out completely.

I got to enjoy a morning out with a dear friend on Saturday while Nathan’s parents stayed with kids. We took in a local craft fair and when I walked out of the building I was so excited to see the Carter Blood Care bus parked in the parking lot. Finally I could give blood!

Seeing so many bags of blood drip into my daughter over the past several months has given me a new perspective on just how important it is to donate. I always say a little prayer of thanks for whomever’s blood it is, that Phoebe is receiving when she needs it.

If you see a Carter Blood Care Center or bus near you and would like to donate in Phoebe’s name, her account # is SPON051556. Donating in Phoebe’s name will give us a discount on paying for blood products for her. Thank you to those of you who have donated already.

Phoebe and the boys spent much of their weekend with their cousins who are home from Africa on furlough. It is always fun to see Deacon with his cousin who was born just five days after him. They are two peas in a pod and it warms my heart. Deacon asked me today why Phoebe is “the special one” and it broke my heart. I know he feels like her shadow at times and I try to be purposeful about spending special time with him, but her needs are so great that it is often out of balance. These are the kinds of things I really need grace for because I struggle with guilt over things I can’t control.

This has changed our family in ways I can’t even describe just yet, and I often worry over how the boys will process this as they get older. I have to remind myself that God will use this time and Phoebe’s illness for good in the lives of my boys and that He will be faithful to walk them through it. Before cancer at least there was the illusion that I was doing a pretty good job of meeting everyone’s needs as a Mom. Now I must totally depend on God to see the needs that I am too tired notice, or to busy to sense.

Anyway, what I really came to say tonight, is that Phoebe has an MRI in the morning. This is her standard, scheduled scan for her chemo protocol and although we don’t expect to find any new growth it is always a little nerve-wracking waiting for the Dr. to come meet with us over the results.
Please pray that Phoebe will not be so nauseous this time around. Poor baby has spent the last two MRI appointments vomiting for the rest of the day due to the anesthesia. If she gets to go in at 10 as she is scheduled, then we should have the results around 1 or 1:30 or so. Last time she got bumped back a couple of hours which is always possible, so we just won’t know until we get there.

Thank you for praying for our girl!

-Amey

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Coming Home Tomorrow and Infection

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Phoebe is being released from the hospital tomorrow. She has done pretty well with this round of chemo, but it was discovered that she has unrinary tract infection. I am glad they finally figured out what was bothering her.

She had complained that her bottom was hurting for about 2 weeks but we could never get a definitive culture. She has been on IV antibiotics for 2 days and she will come home on IV antibiotics for the first time. She will come home with her port still accessed and a home-health nurse will come each day for the next three days to administer the broad-spectrum antibiotics. Apparently this strain of infection is very resistant to antibiotics so she will receive a few different types in order to knock it out.

Please pray that the antibiotics will work quickly and that her counts don’t get squashed while the infection persists. She needs those white cells for a few more days!

Thank you all for praying for us and thinking of us. It will be nice to be together again after a week apart.

-Amey

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Phoebe playing Peekaboo with other patients in the cancer floor playroom!

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Chemo and Tough News

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Phoebe is in this hospital this weekend for chemotherapy and will finish up this round on Tuesday. So far she is handling the chemo well, but she has been quite moody and emotional this time around.

The tough news isn’t really new news, it’s just confirmed news. Phoebe’s brain no longer registers that she is full. She is always hungry because her damaged pituitary gland no longer recognizes satiety. Imagine feeling hunger ALWAYS. And never being able to satisfy it although you eat constantly. This is Phoebe, and barring a miracle, this will be a way of life for her.

Phoebe experiencing constant hunger is one of the reasons she is up during all hours of the night. She usually wakes up every 30 minutes to an hour asking for food. If we say no, she weeps, so we usually try to re-direct her and get her to focus on something else. She plays Angry Birds on my Nook, or she plays with her tea set, or sometimes she can be sung back to sleep for a bit, but she doesn’t sleep for long because hunger gnaws at her constantly.

If we do not maintain tight control over what and how much she eats, she will be obese. She also must take steroids for the rest of her life because she does not produce cortisol and this of course compounds the problem. Add to that, that she no longer has a thirst mechanism, and we have a perfect mess. It is overwhelming to imagine her suffering from constant hunger for the rest of her life…and having to make herself drink although she feels absolutely no thirst. She will have to learn self-discipline in a way most of us will never have to. Oh Phoebe…

And it’s tough. It’s tough not to give the girl a cup of Cheerio’s at 3 am when you are exhausted down in the deep of your bones and she is crying for the 14th time that she is hungry. We bring carrots: crying. We bring apples; crying. We bring Cheerio’s; silence…crunch, crunch, crunch and we get a little bit of sleep. For an hour or so.

So, although we knew it was probable that this was the issue, hearing it confirmed today just made it sink in anew. Please pray for her and for us to have wisdom.

Also, Benjamin is sick right now and could use some prayers.

Thank you for holding us up,

~Amey