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

Phoebe made the move out of ICU and back down to the oncology floor today. She’s back to telling the nurses that the beeping machines are annoying, so I know she must be feeling better! It appears that her “blip” was indeed a reaction to the platelets although the she didn’t really present in the typical way that people do when they have a reaction. First she got very lethargic, then she turned white and her lips were as pale as her face so they took her for an emergency CT scan to check and see of there was tumor growth in an area that might cause obstruction. The CT was clear but while she was in the CT her eyes and lips started swelling up. She had some red splotches but no hives which is usually the first indicator that an allergic reaction is taking place. The Epinephrine was administered alongside a stress dose of steroids and immediately the puffiness receeded and she returned to normal.

A stress dose of steroids means an all night party since she can’t sleep, and Phoebe had lots of fans visiting her room during the wee smalls last night. Her favorite ICU nurses stopped in to play and others who know and love her came by. When I got there this morning there were still streamers hanging from the ceiling!

Deacon came with me today and spent all day with his sister. He was in hog heaven. I love seeing them together. He climbed right up in her bed, took his shoes off and they colored, put stickers on each other, played with play-doh, sang songs and talked. It warmed my heart to watch them banter back and forth like little people do. She was so content with him and I’m sure it was nice for her to have someone her size in bed with her. He never got bored, never complained, just enjoyed his sister and being there with me. It was a good day.

Tomorrow we are going to “Gilda’s Club” for the first time. Gilda’s Club is a program that Gilda Radner started to connect families afected by cancer. We will go to an informational meeting while the boys go to a Magic Show they’re having for the kids. We are looking forward to meeting other families walking through cancer with their children and will hopefully become more familiar with the resources available to us during this time. They have get togethers, zoo days, parents night out, family picnics etc. We have been blown away by the incredible people here in our neighborhood, and I expect that God has more wonderful friendships awaiting us as we connect with other cancer families.

Thank you all for standing watch with us these past 24 hours. It was a sudden and scary shift, and we are grateful to be on the other side of it. Phoebe is already on day ten of her chemo cycle, on day 14 her immune system will start revving up again! FOUR more days until we can take a big, deep breath and say “whew!”.

~Amey

Phoebe was receiving platelets to get her count up when she had the reaction and turned white. She was taken for an emergency CT scan to check for tumor regrowth and they reported that they “did not find anything scary” on the scan. While she was being taken up to ICU her eyelids and lips started swelling up demonstrating that she was having a reaction, most likely to the platelets. They discussed intubating her, since her airway was also swelling but Nathan asked them to hold off and they put her on the bi-pap machine instead. She was given Benadryl and a stress dose of her steroids and the swelling started to come down immediately. She sat up and talked and smiled for a bit then went to sleep and is napping now.

They are giving her broad spectrum antibiotics and watching her closely for signs of infection. Everyone is most concerned about the weakness in her diaphragm because it is so ATYPICAL of what they usually see with kids in Phoebe’s situation. But then, Phoebe tends to be atypical. So, for now we are watching and waiting to see if she continues to improve. Her blood pressure is a little higher, and her other numbers look good. We are praying that this is just a reaction to the platelets and that this is just a little blip.

Thank you all for continuing to pray!

~Amey

Urgent prayer is needed for Phoebe, Nathan just called to tell me that she turned white and her oxygen and blood pressure dropped. She is being moved to the ICU and that’s all we know right now. She is neutropenic right now which makes her very vulnerable. I will update again when we know more.

~Amey

She’s doing so well! Her bi-pap machine is really giving her some relief from working so hard to breathe and the difference in her energy level alone is pretty amazing. Her muscle strength is improving with her increased energy and she is more engaged altogether. It’s amazing what breathing correctly can do for a person!

The neurology team assessed her today and said that the weakness in her hands and feet is almost certainly chemotherapy induced neuropathy, but that they are unsure what is causing  her respiratory/diaphragm weakness. They would like to perform an ECG muscle test which is a not-very-fun procedure where needles are placed in her skin and then her muscles are shocked to see how they respond. It is an hour long test and the sad part is that she can’t be sedated while her breathing is compromised so she will be awake for the test. This will not happen any time very soon because she is neutropenic from her chemotherapy right now, but as soon as she recovers her immune system they will investigate further. I have mentioned Guillian Barre Syndrome after having done some research, but we’ll see what the tests show.

She still has not received the Vincristine and I’m not sure that she will get this drug again unless and until they pinpoint the source of her breathing issues. That makes me both nervous and relieved. I have a love/hate relationship with chemotherapy. I’m sure most people affected by cancer do.

She went for a “walk” in a walking device today that held her upright and she loved every minute of it. I know it felt good for her to be able to be up and moving albeit with a lot of help from a support device. Her morale is something to behold, she is so motivated and really wants to be up and moving, it’s precious to see her try so hard. Tonight as I was leaving the hospital she said for the first time “I want to go home.” She saw me leaving with the boys and wanted to come too, and it broke my heart. Now that she’s been home she knows where we’re going. I don’t know if home will happen any time soon since all of this breathing investigation is about to take place, but I am praying that we figure it out and move on quickly. I am ready to have her here again with us.

Please pray that we would be able to find the cause of her respiratory weakness, that her sodium would level out and for her strength.

~Amey