Monthly Archives: April 2012

Home Again, Home Again, Jiggety Jig!

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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

Another Trip Home?!

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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

Mixed Bag of Blessing

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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

Round 4 Begins Tomorrow

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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

Yoke

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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…

What we’ve been up to….

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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

Phoebe Comes Home, Take 2!

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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