I just figured out that Nathan I spend only 3 nights a week in the same place. Two of those nights are after one of us has pulled an all night hospital shift. To say that cancer is tough on marriage is an understatement. We pass like ships in the night and when we are together we are exhuasted physically and emotionally. Tonight I ask for prayer for Nathan and I. We need grace for this new life and the battle we find ourselves in.

Phoebe seems to be doing well so far with this round of chemo. We are just coming in to the scary part of her chemo cycle where all of her blood counts drop and her neutrophils get squashed so the next few days we will really be watching her closely. She is doing well with her new bi-pap machine at night. This helps expand her lungs beyond her limited ability and gives her a break from having to work so hard to breathe. We have also noticed a small improvement in her muscle strength since she has been on the machine, presumably because she is conserving her energy by not exerting herself so much to breathe. She seems happy and playful and is doing great with all of her therapies. Her sodium levels have been high and she has had some vomiting, but on the whole, she look good. She spent an hour and a half in the playroom today and has been asking to use the “big-girl-potty” and those two things tell me that her energy level is great!

Today, as part of her chemotherapy she was scheduled to receive a drug called Vincristine. Vincristine takes a big toll on muscle strength and since her respiratory status is so weak and her diaphragm muscles so puny right now, we held off. Neurology is going to assess her to see if we can pinpoint the origin of her muscle weakness. It is typical for chemo patients to be weak, not typical to lose their entire ability to walk and breathe well. In other words, the Vincristine does not usually cause this degree of atrophy and her respiratory status in particular is very concerning. Please pray that we would be able to get to the bottom of this. We do not want to deviate from her chemo protocol, but we do not want to give her a drug that will completely knock out her ability to breathe on her own lest we find ourselves back in ICU with Phoebe on a ventilator again.

The boys are doing well. Today it was Averic’s turn to go to the hospital with me and he climbed in bed with Phoebe and played games and watched Veggie-Tales  with her all morning. It was sweet to watch. I think it’s less overwhelming for her to have only one brother there at a time and it also allows them to have some special one-on-one time together. Nathan is with Phoebe tonight and I am with the boys. The weather has been beautiful lately and it makes me want to go on vacation. It has been difficult to have a very small radius of operation…I get nervous thinking about being far away from the hospital and yet I wish we could all just go away somewhere together and have fun. Fun is not the same now because life has an under-current of constant concern that dogs me constantly.  The only time I am free from that is when I sleep, and even then my dreams are often cancer ridden. This is another area I need prayer for.

We trust that we will see His goodness in the land of the living, we see it all the time, we do not doubt Him, we just grow weary in this stretch and need a new way to navigate this treacherous landscape.

Thank you all for coming in to the trenches with us,

~Amey

Phoebe had a good day and that means I had a good day. Going to church on Easter Sunday as an incomplete family was not my favorite, but all of us spending the day in her hospital room afterward was great. She looks so clear in her eyes now that the Methadone and Valium are weaned down so low. Her speech is more clear and she initiates conversation, even tells the nurse “that’s annoying!” when her monitor beeps insistently. We blew bubbles and colored and played with her new bracelets, we walked the halls in her pink stroller all dressed up in her Hello Kitty hair bow and we sat for a time in front of the fire place in the lounge. But my favorite part of the day was when Phoebe and Deacon got into an argument. I LOVED THIS because it means Phoebe is feeling herself! Deacon was coloring with a marker and Phoebe took it from him, “Mine!” she scowled. “No, Phoebe, I’m using that!” said Deacon. “Mine Deacon!” she said again, furrowing her brow..and so it went for a minute or so. And I just watched, and smiled. Her spirits are high and her personality is emerging again, but her physical strength is very diminished.

Physical therapy was tough today. She wants to stand up and she can’t. Each day we hold her under her arms and lift, and wait to see if she will hold some of her own weight with her legs, and each day she has no strength and crumbles back into the chair in tears. We try again and again, and she cries again and again. She braces herself, even scoots forward on the chair she is so ready to stand and play and go places, and it is heartbreaking to watch her feel so sad when her legs don’t work the way she so desperately wants them to. This weakness is a mystery to the doctors. She was intubated for a couple of weeks yes, and that would cause some weakness, but they now suspect that her breathing issues are because of a weak diaphragm and no one can explain that. Steroids also cause muscle weakness, but not usually to this degree, so once again Phoebe is unique.

She has had some vomiting the past day and a half and her white cell count is high so please pray against any type of infection. She has not had fever and she seems to be feeling great which are good signs, but we are entering in to the low count part of her chemo cycle when she will be very vulnerable. At this point in her cycle she is no longer allowed to have visitors outside of the immediate family, the infection risk is too high.

The pulomonologist has Phoebe on a bi-pap machine at night to help gently push air into her lungs and help expand them and she is doing very well with that. She is actually sleeping at night and awake during the day and we are not quite sure what to do with ourselves. Just when we had gotten used to the 3 am party hour, she changes the game. Her lung x-rays look better already and her breathing seems improved, so we are glad to be doing something to improve her respiratory status.

As always, it’s a mixed bag…in many ways she is doing great, in other ways she still struggles. Please keep Phoebe in your hearts and prayers these next few days as things get sticky. We are praying for smooth sailing and an uneventful neutropenic time.

~Amey

The night before Phoebe’s diagnosis, Nathan and I went out to celebrate our eleven year anniversary. We had been looking for weeks on Craigslist for a bunkbed with drawers for the boys and finally located one in Longview, about 40 minutes from Lindale. Our idea of a romantic evening out, was to buy some used furniture and hit up a hole-in-the-wall Mexican restaurant on the way home. Fancy, I know.

When we arrived at the seller’s house to pick up the bunkbeds we were met by a married couple our age who had three boys. She looked like the artsy type, with cropped hair and a black beret and he was a good ol’  boy with a thick East Texas accent. I made small talk with the lady while Nathan and her husband disassembled the bunkbed and before too long we were talking about the “Make-A-Wish” vacation they just returned from as a family. She said they went to Disney World, the opportunity of a lifetime, something they could never afford otherwise, but since her son had a life-threatening disease he qualified for this trip. She said he has seizures..constantly. He sleeps with her at night and has a device in his chest that detects seizures. When he has one, she runs this “wand” over the device and it stops the seizure. I was astounded.

I told her I couldn’t imagine having a child so sick, and that it must be difficult on the family. Then she told me she had cancer. Poor Mama. Her hair is not cropped by choice, rather it is growing back after chemo. Now she takes oral chemo pills. I couldn’t believe her misfortune. How could she take care of her boy who needed so much while she needed so much herself? She seemed so strong, and happy. I commented on her situation and mentioned that the hardest thing we had ever had to deal with healthwise is a blood disorder our Benjamin has that makes him very anemic. She said I should apply for a Make-A-Wish, wish. I said, (and these words have replayed in my mind a thousand times since that night) “Oh, I don’t have a child sick enough for THAT, we have been very fortunate in that regard.”

Exactly twenty four hours later, I was cradling Phoebe’s head in my lap in the emergency room in Dallas having just been told she had a large mass on her brain. I must have been in shock because I didn’t quite grasp the magnitude of the situation until a neurosurgeon came in at 1 am to show us her CT scan. He had obviously been called at home, roused from sleep, to come take a look at the baseball sized tumor in her head and decide if she needed emergency surgery. And then I let myself feel it.

And I thought of her. The cancer Mom to the boy with seizures and how the world can turn upside in a matter of hours. I thought about myself, standing in her yard in the dark telling her how fortunate I was. I wanted to go back, be there again, have the story play out differently. That was the end of whoever I was before. Now I am a cancer Mom.

I think of her often and how different my conversation would be with her now. Maybe one day I will get that opportunity. Tonight my boys will sleep in the bunkbed of the boy who has seizures. And Phoebe qualifies for a wish.

Phoebe had a good day with her Daddy and her Grammy is staying tonight. She received her last chemotherapy infusion today and is tired, but happy. We are all wary of her sleepiness of course, since that was the first indicator last time that something was going awry, but she is still very awake and interactive when she wakes up and that is a good sign.

She is now receiving a special breathing treatment that forces air into her lungs in an effort to expand her lungs more. She has it twice a day and it isn’t her favorite. She is also sleeping tonight with a bi-pap machine in hopes that the extra help with breathing will help her rest enough to be stronger. No one is quite sure why her muscles are so weak, and one of the theories is that she is worn out from the very effort of breathing and trying to adequately oxygenate her body. We’ll see.

The difficult part of the chemo cycle is coming up and we appreciate all of your prayers. I praise God tonight that her sodium levels have been so beautiful in spite of all the extra fluids these past few days with her chemotherapy. Those perfect levels are a good indicator that she will get to come home with us at the beginning of next week if she is otherwise doing well!

I hope you all have a wonderful Good Friday and resurrection weekend,

~Amey

Phoebe begins round 3 of her protocol tomorrow. I dread the oncoming days..watching her skin break down, the vomiting, the lethargy, reading the print-outs showing that her neutrophils are diminishing. Lord Jesus, please let this go well.

She had a wonderful day with her Daddy and her Mammaw. She colored, sat in her stroller, had physical and occupational therapy, blew bubbles. They do not think she has pneumonia, only that the spot on the x-ray is a tiny area of collapse because she is so weak and not expanding her lungs in full. The extra oxygen has been what she needed to bring her heart rate down and stop her body from feverishly working to breathe. She is also receiving a “just-in-case” seven day dose of antibiotics.

The next four days she will receive her chemotherapy infusions and in 7-10 days her blood counts should be down to zero. If she tolerates the chemo well enough and her sodium is level and maintainable at home, we will get to bring her home at the beginning of next week until her next round. This hasn’t happened yet, the stabilizing of the sodium levels soon after chemo, so I will not be in any way surprised if it doesn’t this time.

I don’t have many words tonight, just a fragile feeling and the bracing-myself type of dread that comes the night before a new round of chemo. Please pray for Phoebe. I know you are, and I thank you. I never rightly know where to thank people individually. In my former life I would have sat down and hand-written thank you notes, but time and energy fail me. So, please, to all of you who beseech the Lord on Phoebe’s behalf, who pray for our family, who make beautiful blankets, and send “I Love Neutrophils” t-shirts, to those who send generous donations for Phoebe’s care, and those of you who send cards and letters of encouragement, to those who send books and cancer information and resources, and those who make and send delicious home-made food, those who come to photograph Phoebe and our family, thank you, from the bottom of our hearts, thank you! You uphold us, you lend us your strength and walk the extra mile with us.

Holding on to the hem of His garment tonight,  ~Amey

I won’t lie, today was tough. I hated every second of packing her bag to go back to the hospital, and watching Nathan wheel her out to the car to leave. I went back inside and cried. I cried while I made her bed, I cried while I put away her neubulizer, I cried while I picked up her little palet off the living room floor, I cried when I picked up her socks from where I tossed them on the floor last night. I held Averic and cried, I talked to myself and tried to keep busy with cleaning up. I hate cancer.

Then Nathan called from the hospital: she was in a good mood, she said “hi” to everyone as she was wheeled down to her room on the oncology floor, she seemed okay with being there. Her heart rate was in the 180’s, not acceptable. Her Oxygen saturation dipped repeatedly down into the 80’s, not acceptable. And her chest x-ray showed a little spot on her lung that could be pneumonia, not acceptable. I felt relived. Not that she was sick, but that we did the right thing for her and brought her back.

They commented that they were glad we brought her in because she only has 2 days until her chemo begins and she needs antibiotics in her system for 48 hours at least before being able to start that up. The Oncologists are uncomfortable waiting any longer to start round 3  because AT/RT is so agressive, so it is important that we nip any type of infection in the bud NOW and get started.  They will of course, wait until she is in a good, stable place before starting her chemotherapy, lest we have a repeat of her sepsis situation.

When I arrived at the hospital she was in good spirits, coloring and playing with playdough. She sat in her stroller for a while and watched cartoons and played ball and then she drifted off to sleep in bed. The antibiotics have been started and hopefully we can get that junk out of her lungs. I am sad that my girl is no longer  in the next room, and sad that our four days didn’t go as planned. And I am thankful for the magical time we had with her yesterday here at home. I look forward to the day we can take her to the zoo again and go places as a complete family.

It’s so easy to see clearly now, to be present in each moment of my life fully cognizant of what is happening, what miracles are passing before my eyes. Strange, I know, but I can look at each person in a room now, or even just my children and understand that in order for them to be there, laughing, interacting, living, going about the day, a million little miracles are happening in their body each second. The last 2 days Nathan and I have juggled the administering of seventeen medicines for Phoebe just to make her body work the way ours work. The human body testifies to His magnificence. I am in awe of the beautiful and intricate way He has woven us together and purpose to thank Him more for the delicate balance that He orchestrates in my body (and everyone’s) each day.

Phoebe is a miracle indeed and she has helped me to see that we all are. Living, breathing, co-creating, made-in-the-image of God, miracles. Let us not waste the gift or ignore the Giver who is worthy of our lives. Phoebe fights on for what we already posess.

“And the Lord God formed man of the dust of the ground, and breathed into His nostrils the breath of life; and man became a living being.”  Genesis 2:7

I am happily exhausted from a fabulous day with Phoebe at HOME! It was a close call when I had to take her in to the ER at 4:30 am for a fever, but we made it out around 11:30 after her blood levels came back good, sodium was good, fever went down and she got an antibiotic just to be safe. We left the ER and passed a window overlooking a flower garden and she gasped “flowers!” like it was the first time she had ever seen one. She is seeing the world anew and it is beautiful.

The joy of having all of our children under the same roof  is immense. It warms me every time I walk into a room and see all four of those little people together. The boys huddled around her all day, just soaking her up, we all did. We had a few little blips with the feeding tube and she did vomit once, which sent us into a panic over her cortisol levels and whether or not we needed to give her an extra dose. We are still unsure about the feeding tube placement, oh me.

We are juggling SEVENTEEN medications as well as her ddavp shots and breathing and respiratory treatments. To say that it’s a full time job is understatement. WOW. Even now, as I write this at 11:30 pm, our alarms are set for 1 am, 2 am, 5 am and 6 am to give meds, change out the formula feeds and check urine output. And it is all so very worth it! To watch Phoebe sit on the living room floor with her toys and blankets and brothers all around is priceless. This day has been a gift! Her spirits are so high, smiles are abundant and silliness abounds!

God’s grace is amazing in what we are able to do right now on zero sleep and with an intense and nerve-wracking med-schedule. Phoebe is GREAT motivation for all this craziness, and having her here is more wonderful than I can put into words. Thank you all for praying her home!

~Amey