On December 3rd of last year, I spoke at the very first Ziglar Women Faith and Family conference. My Mom has been traveling and speaking with my grandfather the past several years as well as editing his books and in the fall of 2011 the idea of putting together a conference for women was birthed in her heart. My oldest sister, DeDe had been speaking for business women and in real estate circles for a while and I have been teaching in YWAM training schools for a few years so we put our heads and hearts together and the Ziglar Women Faith and Family conference was born.

Right around this time Phoebe was getting sick. I remember the internal battle I had the day of the conference because Phoebe seemed so lethargic and I felt guilty leaving her when she wasn’t feeling well.  I had no idea that a baseball size tumor was in her little head and that the pressure was making her miserable. I thought maybe she was coming down with a tummy virus.

This is what she looked like then….

The conference ended up being a wonderful experience. It was a different format than I was accustomed to and I was nervous about how it would all fit together, but God blessed the whole day and I found it an awesome priviledge to be able to share what He has done in my life with all those women.

On December 17th Nathan and I packed up our little apartment at World Hunger Relief in Waco TX and loaded up our vehicles with our belongings. Phoebe wandered around in tears until she fell asleep on a bag of blankets. She was not doing well.

This is her on moving day…

The next few weeks as we traveled for the holidays, we were in and out of the ER at 3 different hospitals. She was dehydrated, but how could that be? She was drinking 4 or 5 sippy cups of water a night! She was losing weight and she was pale and from time to time she would vomit for no apparent reason. It was a stressful time and I was wracked with worry for my girl.

On January 1st I took her back to the ER at Children’s Medical Canter and asked for a scan of her brain. The night before she kept saying “my noggin, my noggin..” and holding her little forehead. Then she would say “my eyes, my eyes..” and cover her eyes even though the room was completely dark.  Fifteen minutes after the CT scan I was told she had a “mass” on her brain.

And that’s where this blog starts…and this whole big wild story.

At first our family decided to suspend the Ziglar Women conferences indefinitely. How could we pioneer a new ministry in the midst of such a trial? What if we lost her? What if this changes everything? We didn’t even talk about it. Mom had already signed a book deal with Guideposts and was in the middle of working on her manuscript when all of this happened. I don’t know how she endured to the end of that process…she took 3 shifts a week at the hospital and wept with me, and brought me coffee and helped give ice baths when Phoebe’s fevers rose to 105 after brain surgery. We all took turns sleeping in Phoebe’s bed and holding her arms to quiet the tremors her body was having as her brain tried to heal. It was a total shift. Survival mode replaced any thought of future ministry plans and conferences…we let it go.

And then encouragement came from several places, to allow God to use our trial. See, at the Ziglar Women conference on December 3rd I had taught from the book of Job. I shared about surrender and laying down your rights and knowing that God is God and I am not. I thought laying down my right to marriage and my right to live in America was noteworthy. Until God asked for Phoebe.

It never occured to me that He might ask me for something so precious to me as my child. Everything in me is built to protect her and nurture her and preserve her and at a moments notice I would throw myself into oncoming traffic to save her life. I have often prayed that God would  use my children for the purpose of furthering His kingdom. I thought that might require me to someday entrust my kids to God as they went off to the foreign mission field or that Him using them would mean that they reach out to others more needy with the love of Jesus in whatever place God has them. But cancer? For my TWO year old, only daughter? How could He require me to trust Him to this degree?

These are deep waters.

And I see what He is doing. He is using this sweet girl of mine to move people to pray like they have never prayed before. He is using my Phoebe to break open hearts that have been stagnant or ungrateful. He is using this big mess we’re in to breathe life to others somehow. And that’s why I’m going to speak at the Ziglar Women conference on June 16th. I am tired, weary of hospitals and burn units and chemo days and midnight meds and 4 am emergency room visits but I keep hearing a still, small voice say …

“My strength is perfected in your weakness..”

So barring a crisis, I’ll be there and I’m expecting God to meet me there. This is His story after all…

~Amey

http://www.ziglarwomen.com/

and Mom’s book :  http://www.growingupziglar.com/

We got brave and took Phoebe to our annual YWAM Tyler staff conference at a hotel nearby this past weekend. It was the first time since her diagnosis that she has spent a night away from either our house or the hospital. She loved being in a new place with new people and looking at all the waterfalls in the hotel lobby. Nathan’s Mom went with us and stayed with Phoebe and Deacon so that we could attend a couple of sesssions of the conference. Ben and Averic got to do VBS and swim with all their old buddies which was just over-the-top fun for them. It was a great time for everyone.

It was so nice to be surrounded once again by those who know and love our family and to see just how many people are really invested in praying for Phoebe. We couldn’t ask to be a part of a better ministry family, they blessed our socks off!

Phoebe had a clinic visit today to have labs drawn and everything is looking good. She does have a little cold and some coughing and sniffles, but her blood counts are over 9,000 now so her immune system should kick this bug before too long. Benjamin came with me today to clinic and brought his school work. He is growing up so much and is such a big help to me these days. He carried bags and helped me with her feeding pump and entertained Phoebe while we waited for her labs and somehow managed to complete his school work in between all of that. I was so thankful to have a him along today.

On Friday Deacon has another follow up burn appointment. His burns are looking so good and the two little spots that were not quite healed last week look great! I expect that after Friday he will be done with bandages and that will be nice. We will have to keep him out of the sun for the rest of the summer (oh me) and slathered up with sunscreen any time he might be exposed. The new skin is susceptible to bad burns so we have to be extra careful.

On Monday Phoebe will start her next round of chemo and we might possibly be doing it out-patient for the first time if we can get her home-health physical therapy set up. If not, we will go in-patient so she can continue to receive her occupational and physical therapy each day. We are also tweaking her formula feeds through the ng tube and trying to work on cutting back on the formula so she will desire more table food and drinks. This can be tricky with her Diabetes Insipidus because it messes with her fluid intake, but I would love to ditch that little black backpack she is always attached to any day! Having my girl tethered to something continuously is not my favorite. So, here’s to eating and walking! It’s liek starting over again with all of these abilities she once had. Sometimes it’s hard for me to imagine that she use to climb up into her booster seat and sit down and eat a meal with us. I pray for those days again. I might explode with joy when I see her take her “second” first-steps…I can’t wait for that day!

The night has gotten away from me and I’m tired, but tomorrow I want to talk about Ziglar Women, a conference that I am (God-willing) going to be sharing at in a couple of weeks. Writing that here will remind me to talk about it! I can hardly have a cohesive thought these days so I have to write myself sticky notes to remind me to do things like laundry! So, I am reminding me: tomorrow share about Ziglar Women!

G’night

~Amey

“Jesus…”

It’s all I can say over and over again…

Phoebe woke up this morning with an Advanced Neutrophil Count of 3,300!! She STOOD UP THREE TIMES for 10 seconds on her own two feet with only minimal support from hte physical therapist!! She is coming home today!! The mysterious virus never materialized..

AND….SHE MADE IT THROUGH THE FIRST 12 WEEKS Of Induction Phase, ie: the really horrible, nasty part…the part about which we were told “If you can just make it through this first 12 weeks of chemo, life will get much easier…” and she MADE IT!

And she stood up! And the standing feels like victory to me…like a show down with cancer..

And Deacon is healing beautifully and should continue to do so…

And Jesus….

Through these tears of gratitude His name is on my lips…

“Jesus..”

We will not know the nose swab test results until tomorrow, but it appears that Phoebe has a virus. She has typical cold symptoms; runny nose, a little cough, watery eyes and fever. She has been dehydrated and they have doubled her fluid intake so the last two days have been a juggling act with her Diabetes Insipidus. She is a little grouchy and sleepy, but otherwise does well when she is awake.

Tomorrow is day eleven of this chemo cycle and on day 14 her blood counts usually make a reappearance, so we are watching her closely and praying for her immune system to reboot quickly. This round of chemo included a drug called Doxorubicen which is always very hard on her immune system knocking her counts down to zero and causing mucositis, painful sores throughout the lining of her mouth and digestive tract.

Deacon goes in tomorrow to have his Mepoplex foam pad removed and check up on his healing from the burns. His face is looking really good and most of the burned skin has peeled off now. He is very itchy, otherwise it looks like we might be in the clear as far as infection goes. I will update tomorrow after our appointment.

Please pray that Phoebe’s immune system comes back good and strong and quickly so she can fight off this virus without any complications. Thank you all for your kind messages, cards and letters and prayers, we feel very blessed to be surrounded by such a host of loving people.

~Amey

Three high fevers in a row sent me back to the ER with Phoebe at 4am this morning. Her white blood cell count is zero and it was a pretty dramatic drop from yesterday which is unusual. We don’t need any more “unusual” around here. She has been readmitted and is being given IV antibiotics. Looks like we’ll be dividing our time between home and hospital yet again. Please pray this is just a blip and that her counts will recover soon and well!

~Amey

Last night found Phoebelicious at the ER until 4 am getting a blood transfusion for low hemoglobin….

I have to mention here what an awesome father my husband is. As soon as her fever spiked and we realized we had to take her back, I disolved into tears. He gladly volunteered to take his girl and didn’t even wake me up to take over when he got home. I texted him at 6 am letting him know she needed her shot not knowing he was in the bedroom next to me with Phoebe. I assumed they were still at the hospital since he hadn’t woken me up. I love this man.

Phoebe is having a rough little time because she is once again being weaned from her final doses of Methadone. Today she had a lot of withdrawal symptoms; vomiting, yawning, fever, sneezing, watery – bloodshot eyes, shakiness, anxiety, irritability, sweating….you name it. It looks like we might have a rocky few days ahead as she continues to wean.

Deacon is doing great and continues to improve each day. His face is peeling quite a bit and he is really starting to feel itchy which means that he’s healing up underneath his little foam suit. He goes in Friday to have it removed and see how things are coming along. The stares we get out in public with these two are pretty funny. Phoebe’s bald head is a quick give-away that she is being treated with chemotherapy, but Deacon and his burned face and wrapped up body make people look twice. What a mess we are!

Here’s to a week with our family intact, come what may!

~Amey

Phoebe came home today after her final round of induction phase chemo which makes our Fair home hospital complete.

The new schedule began shortly after Phoebe arrived home when it became time for the bedtime routine. I have to share this here, because it will give you a glimpse of how our bedtime routine has changed in the last few months.

Phoebe’s bed has to be outfitted with a Chux pad and cover blanket in case we have a night time accident. Her nebulizer mask has to be changed out and 6 some-odd pillows must be arranged just so.

After I got Phoebe’s bed set up tonight, I gave Deacon his Loritab knowing that in half an hour it would be time for his uncomfortable washing and wound-dressing change. Nathan got Deacon in the tub for his “half-bath” and then placed him on a towel on the bathroom counter so I could wash his hair, gently clean his neck and face burns and apply his ointment. After this, I took off his bandages and cleaned the burns on his abdomen that are exposed. Deacon does not appreciate all this attention, but the Loritab is a huge help in making him more agreeable.

Three rolls of bandages and a couple of guaze pads later, Deacon looks like an old timey football player. The Mepoplex foam stuck to his chest makes him look muscle-bound, which is really pretty cute. Whenever he is feeling self conscious about his burns we remark about how awesome it is that he looks like a football player. He eats it up.

While I am mummifying Deacon, Nathan is doing Phoebe’s nebulizer treatment, and hooking her up to her bi-pap machine. When everyone is taken care of, my bed is outfitted with a special pillow and a cover blanket for Deacon so he won’t ooze on the bed linens. Tonight I will have Deacon shift (which doesn’t entail much once he’s asleep) and Nathan will be on the cot in Phoebe’s room. Once Phoebe is in a good, deep sleep, we will put her physical therapy boots on her for the night. (By the way, thank you ERIN for coming up to the hospital on your day off just to make sure Phoebe went home with the right angle of boots!)

At midnight, Benjamin and Phoebe need meds. Benjamin is taking an antibiotic for his skin infection and it seems to be getting better. Unfortunately, the medicine he is on requires that he sit up straight for 10 minutes right after he takes it, so we have to wake him up at midnight, have him take the pill, then sit with him for ten minutes to make sure he sits up straight. I have no idea why that is required, but that’s what it says on the label!

At some point after midnight we are finally allowed to go to sleep with our respective patients for the night. *Yawn…and then I set my alarm for 6 am when Phoebe will need her next shot. Crazy bedtime routine. Crazy life.

We are thankful to have our little patients at home but we need grace for this lot. I had a mini-breakdown today just feeling overwhelmed and pulled so many directions at once. Thank you to all of you who are praying for us, supporting us, loving us and just being there for our family. It means the world…

Here’s to a week with new mercies every morning,

~Amey

Deacon was wrapped with a foam pad that contains medicine and then wrapped in bandages that he will keep on for several days. He had to endure one more burn tank scrub down but it looks like the worst is over. We will change his outer bandages every other day and keep his face clean and lubed up with Bacotracin ointment. He will go back on the 25th to have the foam pad removed and hopefully will be mostly healed at that point. He also has to do stretches to keep his arm skin from healing too tight as well as neck stretches to keep the skin flexible. He is not expected to have much scarring, but only time will tell.

Here’s our little guy…

He is in high spirits, just a little emotional at times and sad to see me go to the hospital to be with Phoebe which is the worst part about it so far.  Fortunately, Phoebe is doing GREAT and when I saw her today laughing and joking and having a good time at the hospital it set my heart at ease a bit and made me feel okay about letting her Grandmothers stay with her for the weekend so I can be with Deacon a little more.

Benjamin is doing well, he feels fine minus some residual itching and should clear up very soon. I’m not sure why God has allowed all of this into our lives, but I know He is good and those purposes will be revealed in time. My hope is that He gets all the glory, because as horrible as these things seem, the beauty far outweighs the ashes and His grace for each moment has been something to behold.

~ Amey

Tonight, as I write this, I am at Parkland hospital watching Deacon sleep. When I look out the window I can see Phoebe’s room across the street at Children’s Medical Center.

Some days are too unreal to be real. This was one of those days. Ben (9) woke me up at 6 am complaining that his “chigger bites” (as we suspected yesterday) were really bothering him and that his head hurt. I took his temp, gave him some Tylenol, applied Chigger-X and went back to sleep. Half way through our school morning I found him on the couch crying and complaining that he was feeling worse. Since Ben has an underlying blood disorder called Auto-immune Hemolytic Anemia, I didn’t waste any time taking him to the ER. He’d had a break out like this when he was four that ended up being a systemic staph infection that had to be treated with antibiotics and I knew that if his hemoglobin level was too low he would need a blood transfusion.

Just after getting checked in to the ER at Children’s (where Phoebe was just a few floors above) I got a phone call from Jocelyn, our friend who is helping us out right now. She had been doing math with Averic and heating up some water for mac n cheese when the microwave beeped. We have had to pre-heat our water in the microwave lately since our stove isn’t working, and when it beeped Deacon said “Jocelyn, the water is ready.” To which Jocelyn replied ” Okay Deacon, don’t touch it, I’ll be there in a second.” But Deacon, wanting to be helpful, scooted his little stool up to the microwave and grabbed the glass bowl of boiling water and pulled it out, spilling it all down his cheek, neck, chest and arms. She called me, then called an ambulance and as I was being taken to an ER room with Ben, Deacon was being taken to the ER at Parkland Hospital, right next door to Children’s where we were. It felt like a bad dream. Too unreal to be real.

We made a switch around of people and family members,  and I met Nathan and my Mom in the ER at Parkland right next door after my neighbor Tessa took me over. This is what I saw when I walked in….

He had Morphine and was being sweet, I held back my tears so I wouldn’t scare him. Later he was taken to the scrub tank and Nathan went with him. They said it would be rough, that the first time is the worst, that they would make him as comfortable as possible. I knew I wouldn’t be able to make it through without crying. I am spent with hurting for my children..

Nathan lovingly spared me details, and when I saw Deacon next an hour later, this is what I saw…

He will go to the scrub tank tomorrow and maybe the next day as they see how his burns are doing. Then we will be given wound care instruction and sent home. He will have clinic visits for a while until he is completely healed.

Meanwhile, Phoebelicious was getting fitted for her new boots…

These  little casts will help her foot drop and stretch out those muscles so she can learn how to walk again! Yay for walking!

And here is the Phoebster doing her Occupational therapy in her super-she-ro outfit. She had a great day. Phoebe being the child I was least worried about today was a new experience!

I wish I had a picture of Benjamin to share, but I left him in such urgency to get to the ER for Deacon, I felt so bad leaving him. He does not appear to have Staph, but does have a bacterial infection on his skin and is being treated with antibiotics. If it doesn’t improve in 48 hours he will go back. His blood labs were drawn and his hemoglobin looks great, so I am thankful for that. I told Nathan we need to put Averic in a padded room just in case….I can’t believe 3 out of 4 of our children were in the hospital today. What a day.

Thank you to all of you who have been praying for us. Apparently we need it A LOT.

~Amey

So much to catch up on, where to start?

Round five of Phoebe’s protocol begins tomorrow. This marks the LAST ROUND in the induction phase ie: the really yucky part! After this round Phoebe goes on “maintenance” and although I don’t understand exactly what that means, I know that it means that this is where things are supposed to get better. I’m hoping it means more uneventful stays at home and a more predictable life with a girl who feels good! This past week with Phoebe home and feeling good has been wonderful.

Today we wanted to do something special that Phoebe would enjoy since she goes in-patient tomorrow, so we decided to take a trip to the farm in Waco @ http://worldhungerrelief.org  where we lived last year during our agriculture training. We moved out of our farm apartment December 17 and fifteen days later Phoebe was diagnosed with her brain tumor.

The World Hunger Relief farm is the backdrop to all my memories of a healthy Phoebe, so I wasn’t sure how I would feel about being back. In my mind’s eye I see her scooting around on her pink tricycle there, blonde curls aglow in the sunshine. I see her on Nathan’s shoulders as he stands by the fence throwing dinner left-overs to the pigs. I see Averic pulling her around in her red wagon while she squeals with delight. I imagine her bare little feet on the gravel road. The farm is the last place life was normal. And today it was perfect, being there. We were welcomed back into the fold with open arms and Phoebe relished being loved on by people who are so familiar to her. I could see her spirit swell and all I felt was joy for the moment, not loss for days gone by.

In true farmie form, our farm family prepared an impromptu meal of grass-fed burgers and farm fresh salad and we had sweet fellowship together. The boys found their little friends and took off running; they checked up on the old fort, visited the goats and made themselves at home all over again. It was spectacular to see them in their element, to see them having so much fun. Today was a gift, and Phoebe felt great. It was the perfect exclamation point on a wonderful two weeks at home!

Nathan and I also really enjoyed our weekend away at the home school conference. The workshops this year were particularly relevant to areas where we needed some light in our lives and we came away renewed and with new resolve in several areas. Benjamin met us at the conference for the chess tournament on Saturday and was pleased to win 6th place for his age group. I got to see both of my mother’s on Mother’s Day and enjoyed a lovely lunch out and beautiful flowers from my father-in-law. I could not have asked for a better weekend.

So, here we go with Round 5 tomorrow. Phoebe will have an Echocardiogram then she will receive her intrathecal (spinal) chemotherapy injection and be admitted to the Oncology floor. Tomorrow evening her IV chemo will start and continue over the next four days. This round she will be staying through the weekend so we can get her feeds through her ng tube on a schedule rather than her being on continuous feeds. This will allow her to be detatched from her pump at intervals throughout the day and also give her more of an opportunity to eat table food.

Praying for a smooth round and feeling grateful to God who sustains my girl…..

~Amey