Phoebe seems to be doing much better and is on the way home. We will update you soon.

-nathan

She lasted about 36 hours at home. Phoebe has had a rough time ever since we got home Monday Night. Last night she wasn’t feeling well with lots of headache and tummy pain. She had a low-grade fever all night and this morning went to above 101 as well as vomiting.

She doesn’t have an immune system right now so she is being admitted in Dallas and will receive intravenous antibiotics.

Amey is with her this time, so the boys and I are bachelors for a while. I see delivery pizza and lots of old school black and white twilight zone episodes in our future.

Please lift up Phoebe in your prayers as she is feeling really crummy. Praise God for the good MRI results and a day-n-a-half of home time!

-nathan

Praise God, Phoebe’s MRI came back with no evidence of disease today! Her hemoglobin was low and we had to stay all afternoon to get a blood transfusion and she is feeling puny. But on the whole, she is doing great!

Thanks to all of you who have reached out to us in so many ways over the last few months.

One more round to go!!!!

-Nathan

Phoebe is being discharged today after a long week of chemo. She is doing great!

Please pray for peace as we will be driving back to Dallas early Monday morning for an MRI to check for new-growth.

-nathan

Phoebe gets a visit from the therapy dog.

Phoebe has been doing well during this round of Chemo. She has felt puny and not been sleeping well, but on the whole she is doing well. She will be in hospital till Saturday.

-nathan

Tomorrow morning Phoebe goes in for her next to last round of chemo. We can see the light at the end of the tunnel! Her next MRI takes place on the 11th. Thank you all for standing with us, praying for us, and supporting us. Although we will still have hurdles post-chemo, we are thankful to be where we are.

-amey

My 2 older boys are spending the night in Phoebe’s room for the second night in a row, taking the night shift. I am so proud of them and so blessed by them both. They asked if they could stay with her and I thought one night would do them in, but they took naps today and wanted to stay with her again tonight! They only woke me up 3 times to ask about diaper cream and snacks for Phoebe. They have had to grow up so quickly this year in many regards, but it has made them shine as loving brothers. Proud Mama.

-amey

I’m discouraged.

It seems like we go along in survival-mode for a month or two at a time; have some highs, a few lows, and then we crash. Because really, in spite of the hope we have for life getting back to “normal” when chemo ends, I know it won’t be. It will just be “less crazy”.

After the last several nights, I wonder how we will survive…sustain, long term. Phoebe is awake constantly at night, wanting food. This is not abnormal for her, it just seems to be getting worse with no explanation.

Nathan usually takes the night shift for a couple of a reasons; first, he sleeps like a rock so he doesn’t wake up every time Phoebe talks or make a request, which is good because she will sometimes go back to sleep if he doesn’t answer. And second, I wake up and home-school the boys and this way, he can sleep off the night before with Phoebe. I am a very light sleeper and am usually awake most of the night when I take Phoebe night-shift, and I am unable to sleep once the sun is up. This isn’t a sustainable way to live, we know, but we were hoping things would get better when her body wasn’t so out of whack from chemo. Now we know it’s her constant hunger that keeps her awake more than anything, and aside from a miracle, that won’t change.

A typical night in our house goes like this:

At 8pm Nathan does devotions with the boys while I lie down with Phoebe and get her to sleep. At 9pm I go in and give her her DDAVP shot. I fill her water bag up with water and Potassium for the night. At 10 pm we go in and give her Melatonin and plug her ng tube in to her water bag . At midnight one of us goes in to administer her meds. Then we can go to sleep. No more meds until 8 am.

She usually sleeps decently until around 2am minus some complaining about tummy pain from the Potassium or the need for a diaper change. At 2 am the eating begins. We have tried re-directing her, distracting her, giving her Ativan so she will sleep it off, giving her a food she doesn’t much care for as the only option, etc. Nothing works. So we started putting a bowl of Cheerios by her bed at night. When she says she’s hungry, we give her the bowl of Cheerios. She will often eat for a bit then fall back to sleep. When she wants to munch, she just grabs a handful of Cheerios.Lately, a bowl of Cheerios hasn’t been enough. It’s been 4 bowls. I get up 2 or 3 times a night to check in on her since Nathan sleeps heavily and I can often hear her crying. She has unexplained pain in her bottom that keeps her up and makes her want her diaper changed frequently. Most mornings there are 6 or 7 diapers on the bedside table. In the morning, I shake out the sheets and clean up the Cheerios off the floor and toss all the diapers while Nathan sleeps off all of the waking-up he did. Her room gets vacuumed daily.

When she wakes up, she usually eats 2 or 3 “breakfasts”. This morning for instance, she has had 2 waffles, 2 cheese quesadillas and an orange. There does not currently exist any type of appetite suppresant medicine that does not work by signaling the pituitary gland to “trick” it into thinking the tummy is full. She has no pituitary function whatsoever, so a normal appetite suppresant will not work for her.

How can we live like this? I thought having a newborn was difficult, that was a piece of cake compared to this. We are on our third appeal with insurance for a night nurse, or even just a night helper who’s not a nurse, so we can get some sleep. But they keep denying us, saying that she’s not “sick enough”. I wonder what qualifies a family for such help? At any rate, it makes life feel hopeless. Eventually Nathan will be back at work, and then I suppose our only option will be to put the kids in school and me take night shift and try to sleep during the day while watching Phoebe and Deacon? What a life. Survival.

I’m certainly not the only one in the world with a child with special needs, but without some sort of help, I don’t know how care-givers do it. Being constantly exhausted steals initiative, makes us irritable with each other, and makes it hard to dream about the future. We need a miracle.

Having so many friends who have lost children to this disease, I feel ridiculous when I make posts like this. We still have Phoebe here with us, and there are just as many precious moments in the wee hours as there are difficult ones. I guess I’m just trying to figure out how we make this new life work…

I just realized that neither Amey or I have posted any updates since Phoebe was released from the hospital. By now you know that no news is usually good news.

Over the past few weeks we have been battling some kind of virus. Phoebe was scheduled to be admitted today for chemo, but on top of everything else, she has developed some kind of head cold with a nasty cough. This is not typically a big deal, but she needs to be at tip-top shape to handle the beating the chemo dishes out.

My prayer is that God will continue to sustain Phoebe in ways the rest of us could never understand….

There are hundreds of people to thank, quite possibly thousands if you include all of the people praying for Phoebe. We do our best to send thank yous out. Recently I took a picture of phoebe, thanking our local hardware store. The owners are a wonderful couple who attend our church and helped us, along with many others, to make our house safe for Phoebe to come home to.

Although this was an indescribable blessing, the reason I bring it up is because I really wanted to share the “thank you picture” we took because she is so darn cute in it!

Thanks Smith County Lumber Co in Lindale!

-nathan