This small, cute person was VERY excited when she heard she was coming home today….

And look who is relaxing in her princess bed watching some Larry Boy….

On Monday we take her for a physical therapy evaluation to see if she needs to receive in-patient physical therapy at a PT Baylor facility. I am hoping we can arrange at-home  therapy for her so we don’t all have to be separated again, especially between chemo treatments. Her counts will be dropping soon so we will probably lay low for a while while she is immuno-compromised.  It’s so nice to have everyone in the same place and we are looking forward to a special time with our girl!

Savoring every moment,   ~Amey

It looks like Phoebe will be coming home tomorrow if she continues to handle her chemo like a champ! She has done great so far, with only a small amount of nausea and some low magnesium levels. If she looks good tomorrow and her levels are still in check, she will get to come home again! I can hardly believe it. Apparently THIS is what chemo is SUPPOSED to be like. Who knew?

In other news, the boys took a field-trip today to the fresh-water fisheries in Athens, TX (where Deacon was born) and had a wonderful time with their Great-Grandparents to boot! Here are a few pics of their adventure….

So, here’s to a great night for the Phoebster and another opportunity to spend life together as a family at home! Thank you all for praying her through and staying with us!

~Amey

It’s been another “mixed bag” kind of day, but I am ending the evening feeling blessed just looking over these pictures from our last week at home again. This morning Phoebe had her hearing tested and for the first time her test results showed that she has some high frequency hearing loss caused by a chemotherapy drug she receives called Cisplatin. It was sad to sit in the same room with her and hear sounds that she didn’t. I am told that this will not likely affect her speaking ability, but will probably make it difficult for her to hear sounds like “ssssss” or “ttt”, rather than lower tones. We are not altogether surprised, as we were warned that this particular drug causes high-frequency hearing loss, just a little saddened for Phoebe. She will receive Cisplatin again this round of chemo but at a 50% reduced rate. And I would take hearing aids over cancer any day.

After her Audiology test we went to the Oncology clinic and she had her port accessed and labs drawn. All of her numbers looked good and they commended us for a great job maintaining good sodium levels with her DDAVP shots. After the balancing act of all those meds for a week, it felt good to know we were on top of things and she was doing so well. I felt like I had passed a big exam with flying colors!

She wasn’t very excited to be back at the hospital and asked to “go bye-bye” several times. I ached for her because I knew she was feeling anxious and sad about being here. She perked up when we got to her room and I mentioned eating. She has been taken off food restrictions and can now eat whatever she wants! She had 2 bites of spaghetti, some applesauce and some milk and she was thrilled! It was just a little, but it’s a start.

She lookes so good, doesn’t she!? Her strength is improving each day, her breathing is much better, her silliness is back….I am just beaming inside with how great she’s doing and how far we’ve come in just a few weeks.

Tonight her chemotherapy infusuions start and will run over the next four days. If she tolerates it as well as she did this last round, we will be looking at another week at home in about a week or so. In 2 weeks she will have an MRI to check for tumor, and those days are always nerve-wracking. But for now, all I feel is hope and an expectancy of good things. It was a magical week at home and we are praying that she comes through this round of chemo just as beautifully.

~Amey

Here is Phoebe Lu out on the town this weekend!

We have had a wonderful week at home as a complete family! I will post more pictures of our time together in my next post. I will say that administering meds all night makes me appreciate our nurses all the more!  Tomorrow morning we head back to the hospital for round 4 of chemotherapy. She will have her spinal chemo injection around 11 am and we will be admitted to the oncology floor for treatment. Please pray for another smooth round of chemo. It was such a blessing to be able to take Phoebe home for a week and I am praying that we get a repeat this time around! Thanks for loving our girl and being a part of our journey.

~Amey

We took Phoebe in to the Oncology clinic yesterday to have her labs drawn.  No one stares at her bald little head on the oncology unit, and an ng tube is no big deal, she’s just another cancer kid. Phoebe was sitting quietly in her stroller coloring in her Dora notebook when I saw her; a woman, a few years my senior, walk out the clinic door into the waiting room. A little boy, maybe 5. slunk down on the floor out of her arms, and splayed himself across the white tile. She slung her purse back over her shoulder and hoisted him back up to her hip. I looked at him then, saw the slant to his eyes typical of Down Syndrome and was overcome. My daughter has cancer, her son has cancer and Down Syndrome.

His mother walked over to the check out counter, dug around for her wallet, and he flattened himself on the floor a second time, muscles limp. I looked at her face then, searching for the familiar tired look in her eyes, scanning for the weary shadow that stares back at me in the mirror. I wanted to say “I have no idea what it’s like for you, and I have every idea of what it’s like..” but she turned to leave and I sat in that red kiddie-sized chair and thought about yokes, and how some of them are heavy beyond bearing.

I whispered through tears to my husband about yokes and some people, and when I looked at Phoebe she appeared so healthy.

Paradigm shift.

Someone is always carrying a heavier yoke. Suffering is relative. And I can’t bear up under all this suffering that I’m surrounded by without throwing myself at the feet of Him who suffered. He knows. He chose it. He obeyed, and He was not spared.

I think about her tonight, how her motherhood is so different than what she imagined when she was a girl, how mine has become that. And I pray that He who was “a man of sorrows acquainted with grief” will shower her with grace for each moment, give her purpose within the struggle, flesh Himself out in her life in the midst of her daily grind. I pray that He would make intercession for her when she knows not how to pray, and these things too, I ask for myself.

There is always someone struggling more…bearing a burden more immense. If I focus outward, I become an encouragement to others and am ministered to  in the process. If I wallow, I am self-focused and the cross is not enough.

Tonight I’m feeling thankful…

Phoebe went to the Dallas Aquarium! This is her first time to go somewhere other than the hospital or home since January 1, 2012.

SMILE Fair Family!!

Proud brothers!

SO GOOD to be OUT and ABOUT with our girl!!

Time for some backyard Play-Doh fun!

A Nuzzle in his natural habitat…

Phoebe watches her brothers swim in Daddy’s backyard aquaponics system. This is the sustainable food system that Nathan was working on while we did our agricultutral training at the farm.

 I cooked my first meal in four months and we all sat down together to eat dinner. It is so wonderful to be together. Also, our dear friend Jocelyn who has nannied for us for several years on our outreach trips and summers in Mexico is here to help out for a couple of weeks. Phoebe’s middle name “Lucille” was chosen in honor of our Jocelyn “Lucille” because she has been such a blessing to our family. She loves our boys and serves our family and we are thrilled to have her here.

Phoebe has an apointment tomorrow to check her labs and make sure she’s doing okay (or that we’re doing okay administering her meds!) lol. I am glad we’ll get to “check in” and see how she’s doing because although she seems fine, there is a certain security in having those electrolyte numbers. Thank you all for praying for us, we are soaking it all in while we have her home!

~Amey

I am cross-legged on Phoebe’s little canopy bed listening to the rhythm of her bi-pap machine while she dreams away right next to me. She’s home again, this time for a week! Nathan had her all gussied up and ready to go when I arrived with the boys and she was so excited. When I walked in to the elevator before her, she whimpered “I wanna go too”, she was nervous I was leaving her there. Poor thing. She giggled all the way out the front doors of the hospital, said goodbye to her friends at the front desk and we were on our way.

The boys piled up in her bed tonight and the four of them watched Gilligan’s Island, a favorite around here. It was a perfect evening at home. I can’t believe all of the equipment Phoebe has in this room. Two home-health providers came by tonight to drop of her oxygen and bi-pap machine and show us how they work. I was so nervous about going home last time because I wouldn’t have monitors to know her heart rate and oxygen saturation, and now I have both.

Nathan has the med-table all set up again complete with sticky notes noting the times to administer them. We will be giving meds at midnight, 3 am, 5 am and 8 am…*yawn* and it’s worth every bit of it! I am praying that we will really be able to make this time special for her by taking her out more and doing fun things. A friend of mine from highschool sent us tickets to the Dallas Aquarium and I think that will be the perfect thing for us to do with her while she’s home. She can sit in her stroller and still see the sights and it should be fairly easy for us to give her meds in that situation.

As we were driving home this evening I looked in my rearview mirror, and I saw four beautiful faces in my backseat. Phoebe was studying the world outside her window with wonder and the boys were jabbering happily. Tears of gratitude welled up in my eyes and I took a deep breath and whispered “thank you Jesus”…to have that one extra little body warming that often empty seat is such a feeling of completeness.

I remember several weeks ago when everyone was taking their Spring Break vacations, I would scroll through facebook and see the status updates: “Having such a wonderful time at the beach with the kids!”, “On the slopes today!”, “The car is all packed and ready to go!”. I felt so “stuck”, for us it was another week of homeschooling (why take off when we can’t leave) and hospital duty. But THIS week will be our Spring Break! Phoebe is home and we can make a week full of fun right around here. This week is for making memories and helping Phoebe rediscover life outside of the hospital!

~Amey

It was a good weekend. Phoebe is doing great which always makes it easier for me to leave the hospital and really feel at peace at home when my Mother-in-law comes to stay with her on the weekends. My Mother-in-law Sarah, is a professional at taking care of people. I remember the week after Deacon was born, I was recovering from a c-section and suddenly Nathan and myself as well as Ben and Averic were totally knocked off our feet with the flu. Grammy to the rescue! She came over, cleaned up vomit, changed sheets, did laundry, took care of my 1 week old and myself, was up all hours of the night going from boy to boy, getting cold Sprite, putting cold washcloths on little foreheads…amazing. She was a lifesaver then, and she is now.

I don’t know how we’d do this without our Moms. Each week they come to take shifts with Phoebe to relieve us and make it possible for us to be at home with our boys. They have both learned along with us how to guage sodium levels and detect the signs that mean she is ready for her DDAVP shot. They change scary diapers at 3 am and have parties with Phoebe til the sun comes up, faithfully text me with updates at odd hours and then go home and work. If this exhausts me at age 35, I know it exhausts them being so old and all. *wink* Really, we have some pretty awesome Mamas and Phoebe won the Grandma lottery.

Benjamin is spending the night with me and Phoebe tonight. He has been begging for a while and I finally felt like we were at a place where he could. I brought all of his school work for tomorrow and he decided to get a head start and tackle Bible, Grammar and Reading this evening so he could have a short day tomorrow. He did a great job of entertaining Phoebe tonight. In fact, I think the energy level of a 9 year old is much better suited for this type of thing than mine. He blew bubbles, did silly dances that got her giggling, watched Veggie Tales with her, snuggled…I love seeing her brothers love her.  And I love that home education affords our boys time to be with her.

Phoebe looks more like herself than I have seen in a while. She is now weaned off the Valium and almost completely off the Methadone and she looks so clear. She got to have her port de-accessed tonight and have a real bath in the bathtub. She LOVED it. The little bugger turned into a prune, she stayed in there for an hour! She was laughing and washing her My Little Pony’s hair with shampoo, pouring water in a bucket and having a grand time all around. It was tough talking her into getting out. Who would have thought that a simple bath would become a highlight of our lives? I use to rush through baths to get the babies in bed for some quiet, tonight I pulled up a chair and just watched for an hour.  She’s so precious.

If all continues to go well, we’ll get to take her home on Tuesday! We are feeling so relieved that this round of chemo went so well and are looking forward to having her home again.

~Amey

Guess who had a GREAT day today in the playroom and going for walks on the Oncology floor?

And….guess whose NUETROPHILS made an early appearance??

Immune system reporting for duty! All good news here today! Let the wild rumpus start!

~Amey