Phoebe is doing great, her immune system is coming back and we are on the way home!

-Nathan

She seems about the same today. She received a another bag of blood as all of her numbers have hit rock bottom. She still has fever but, we are expecting her to get better as the week goes on and her immune system comes back.

We are also in quarantine because of the fever. This is really been hard on Phoebe because she loves to go to the playroom. I really am grateful to the nurses, volunteers, chaplains and staff that have taken the time to come play and talk with Phoebe in our room today!

Taking a trip to the bathroom is a chore

Phoebe’s face lights up when a visitor comes in!

Phebe Skpyes with her grandparents and cousins.

Phoebe has had more fever today and her hemoglobin dropped back down to 7 despite her blood transfusion yesterday. She got another unit of blood today and will hopefully feel better soon. This round of chemo has really squashed her blood. Please pray that she would be able to maintain a decent hemoglobin level so that she will feel well enough to eat. Thanks everyone..

Just wanted to update that Phoebe is doing better. Her hemoglobin was at an all-time low of 6 and her symptoms seem to be primarily related to severe anemia. She received a blood transusion this afternoon and was transfered to the oncology floor where she continued to show improvement and perk up.

She still has not had an appetite, but Nathan said she is obviously feeling much better. Unfortunately, she will have to remain in-patient until her blood counts start to come up, so it could be a few days before she is allowed to come home.

Nathan was able to take a good long nap with her late this morning and a dear friend brought him breakfast and coffee. Thank you all for lifting us up today and in the wee small hours. Thankfully this time it looks like it was just a chemo-related issue and not illness.

~Amey

It’s 9 am and they are still in the Emergency Room. It has been a long night, with 3 attempts to access her port with no luck. They gave her an IV in her hand, only to have it quit working a short time later and had to put one in her other hand.

Her sodium level is fine, but her hemoglobin is low so she is being prepped for a transfusion with Benadryl. Her blood pressure is low and they are going to keep her in ER until they decide where to transfer her, either Oncology floor or ICU.

Thank you all for praying for our girl.

We were just about to call it a night and head for bed. I checked in on Phoebe and her little cheeks were hot. She roused and told me she was cold. Not good.

Earlier this morning she was feeling nauseous, but I had just administered her Potassium, and that always makes her tummy feel sick. She vomited a couple of times and we immediately gave her stress dose of steroids, thinking her hemoglobin was probably low since she seemed tired.

She perked up as the day went on, but she would tire out easily and take another nap. All of this isn’t too unlikely since she just completed a heavy duty round of chemo, but when I took her temp tonight it was 101.1 which is an instant call to the hospital. We knew, with her other symptoms and her counts heading down that she would be an instant admit, so Nathan called the hospital while I got to work packing.

This routine is so familiar to us now; 4 sets of clothes, 4 pajamas, her Hello Kitty slippers, fuzzy socks, toothbrush and paste, warm hats and hoodies.

I pack Phoebe up while Nathan packs for himself.

I unhook her water bag from her pole, pack the power cord in her bag. Then meds; cold meds with an ice pack, pill bottles, needles, syringes, alcohol swabs. Then her EMLA cream for her port site. I cut a 2 inch square of Press-N-Seal, put a quarter size amount of numbing cream on it and apply it to her port site so she will be ready to have her port accessed when she arrives at the hospital.

I make a pot of coffee for Nathan, pack her diaper bag with Cheerios, granola bars, stickers, beads, books, paper, pens.

I dress her for the hospital, nice and warm with a fresh blanket. Nathan puts her in the car and I run through the house to make sure we haven’t forgotten anything. I hand Nathan his coffee.

I run out to the car with Babycakes (Phoebe’s baby doll) wrapped in a blanket. “Ooooh Babycakes” she coo’s. “She was crying.”

I tell her that Babycakes didn’t want to be left behind. I kiss her hot cheeks. Nathan hugs me a quick goodbye, it’s 2 am. He has to drive an hour and 45 minutes to Dallas.

“Two more rounds” I say…”Just two more rounds”. And off they go.

2 AM, on the way to the ER in Dallas with fever, chills, vomiting, etc. She has no immune system right now.

I can’t believe we’re really at this place in Phoebe’s chemo treatment. Just this afternoon her oncologist stopped by and we were remembering together what things were like for Phoebe this time last year. She was six days post-invasive brain surgery, was just beginning to get past her tremors and would soon be intubated for a serious seizure. Chemo would begin at the end of January, and by February Phoebe would be in septic shock in ICU fighting for her life.

I am so glad to be here, in this hospital room tonight with my girl as she finishes up this round of chemo. We are in the same room she was assigned to the very first time she came to the oncology floor. This is the room where I pulled out gobs and gobs of beautiful blonde curls that were coming loose. The curls I still save in a Ziploc bag in my dresser drawer. And tonight she is here by my side, head as smooth and shiny as an apple; she has battled her way through sepsis, she has been through intense respiratory therapy when her left lung was collapsing, she has had to re-learn how to swallow how to hold her head up, how to use her fine motor skills and how to walk. She has lived through adrenal crisis, mucositis and hallucinations from her bouts of high sodium.

And she has lead the way with her joy. She has lived in the moment when I could only fear the future. She has brought a smile to others when I have been so inwardly sad that I hardly noticed people around me. Her contageous laugh has attracted a gaggle of nurses to her room to “see what all the fun was about” time and again. She has said “thank you” every time someone drew blood or accessed her port. And she asks everyone she meets “did you miss me?” even if they have never met. She radiates joy, this girl. It’s something other-worldy I can’t explain. But each night when she makes her rounds on the hem/onc floor just before she goes to bed, I see it. In the faces of all who have come to love her here, I see her joy reflected.

When we named Phoebe, I just loved the name. I didn’t know it meant “Brightness”. We chose her middle name “Lucille” after a dear friend who was also a nanny for us when we traveled in missions. I didn’t know Lucille meant “illuminated light”. But my daughter is..a bright, illuminated light. She really is. It is the perfect description for Phoebe Lucille. And I get to be the steward of this bright, illuminated light. What a blessing.

I can’t believe we’re here, so close to the end of treatment. It seemed forever away, and now it is in sight. I know the end of treatment will carry with it it’s own worries and concerns. But for tonight, I will just live right here, in this room that has seen so much, and recount this year with gratitude.