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

Can’t seem to stabilize her sodium. They are transferring her to Children’s in Dallas.

-nathan

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

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 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!

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

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

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

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

Phoebe was released from the hospital yesterday and got to come home. Her fluids have seemingly balanced out and it appears that her electrolytes are getting back on track.

We asked to delay this next round of chemo that was scheduled to start Tuesday and it has now been moved to Friday. We are hoping for an uneventful week at HOME with her until then!

Nathan and the 2 big boys went out of town for a Cub Scout campout today and I know they are having a great time. Deacon welcomed Phoebe home and we had a nice dinner with my in-laws. It was nice to get to spend some special time with the 2 littles and I also got some unpacking done. Here’s to a healthy week with everyone at home!

Thank you to our friends and family who brought food, toys, clothes and coffee to the hospital. Those little things are big things!

-Amey

Thank you all for your prayers. Phoebes kidneys are finally responding and she has finally stabilized. Her sodium has come back down to normal and her potassium and other electrolytes are back in line. We did this with hospital intervention, meaning methods that we cannot use at home.

She is still admitted at Children’s, but we are basically doing what we would do at home for 24 hours to see if she will stay stable without intervention. The last thing we want to do is have to come back again over the weekend.

Thanks again for all of your love, kind words and prayers. We will keep you updated and let you know when she gets to come home.

-Nathan

Phoebe playing air hockey with a fellow oncology patient.