Phoebe’s MRI today was squeaky clean and there is much rejoicing in the Fair fold tonight! Nathan and my Mom were at the hospital this morning with her for the clinic visit, port access and MRI prep and Phoebe was in a belly-laugh sort of mood, having fun and spreading her little love beams all around. The name Phoebe means ‘brightness’ and her middle name Lucille means ‘illuminated light’, and a bright, illuminated light she is.

She had a lumbar puncture as well to test her CS fluid for cancer cells and we will get those results later.

Tomorrow Nathan and I are headed to Arlington for the annual home school conference and book fair we attend each year. Jocelyn and Nathan’s parents will be here with Phoebe and we will spend our first night away at a hotel since the first week of her diagnosis. Jocelyn is trained in how to give Phoebe all of her meds and shots and that is such a blessing to us because it means we can steal away for a night and feel confident that she is in good hands.

We look forward to this time each year to get away together, attend great workshops about parenting, scheduling, methods for sowing God’s word into the hearts of our children and lots of other rich topics. We spend the day checking out the different publishers, looking over educational and discipleship materials and going to the workshops, but my favorite part is always eating lunch together alone and talking about our goals for our family for the upcoming year. Most of all, it will be nice just to be together, bask in the relief of a clean MRI and enjoy doing something “normal”.

We are so blessed tonight! Thank you for praying for our Phoebelicious….

And thank you to the secret donor who got the hotel room for us, whoever you are!

Sometimes I log on to here in the evening and I’m wordless. It’s times like these when you might not hear from me for a day or two or even three. My silence often means there is no new news, or we’re worn out from having fun, but other times it means I’m simply numb, worn out, emotionally blank. This is the part of the marathon where my “muscles” are growing tired and the finish line seems a million miles away and throwing in the towel sounds really good. But this isn’t an optional race, there is no choice but to keep putting one foot in front of the other.

Right now, one foot in front of the other means navigating Phoebe’s mood swings from the steroids, fetching applesauce or macaroni and cheese at 3 am because of her hunger from the hydrocortisone, taking unexpected trips to the hospital because her ng tube got pulled out or spending several hours in the ER just to be sure her excessive sleepiness isn’t a bout of wacky electrolytes. It’s exhausting. Having Phoebe home is a thousand times better than having her at the hospital, but it is demanding. And it is at the end of these days that I come to write and find that I have nothing left.

All that aside, Phoebe is doing great. We have been out several places with her since her counts have been coming back. She was a big hit at the grocery store and several people stopped to talk with her which she loved. Tonight we went out to eat and she pulled out her ng tube just as we arrived at the restaurant so she got to be “untethered” for a while which is always nice. As we drove home, I looked back at her reflection in the rearview mirror without a tube on her face, completely free from any type of medical device and was overcome with gratitude. Just 2 months ago she was completely swollen, blistered and intubated in the ICU with several different IV lines in her body fighting septic shock and tonight she was riding down the road in her carseat with nary a tube. God has taken such good care of her.

I see her making improvements in her strength every few days. It is slow going, but today when we put her on her tummy she held herself up on her arms for longer than she ever has, and she held herself in a crawl position without freaking out like she tends to. She is also starting to scoot herself across the bed when she wants something that is out of reach which is new.

Phoebe has not lost any ability, walking or otherwise, that she can not completely recover. Sometimes people ask if she will ever walk again and I forget that I might not have communicated that. Yes, Phoebe will be able to walk again with agressive physical therapy and we are setting up in-home therapy for her during the times she is home. I am also told that she will see an ‘Orthotist’ (sp?) who will take a mold of her legs to create cast-like braces for her to wear in order to correct her foot-drop and get her muscles stretched out correctly. She has a lot of work ahead of her, but her spirit is so strong and her motivation so inspiring!

Thursday is MRI day, and we appreciate your prayers! Here’s Phoebe and her Daddy tonight at bedtime…..

Look who got to come home again today!  Here she is watching her brothers jump on the trampoline….

Her fever abated again and she got another good dose of IV antibiotics so she was released from the hospital today and is doing great. We will go back on Tuesday for labs and be admitted for the night to prep for her scheduled MRI on Wednesday. Yep, it’s MRI time to check for tumor re-growth. She will be intubated and sedated for 3 hours while they scan her brain and spine. It’s always nerve-wracking waiting on those results, they even have a name for it in cancer circles; “scanxiety”. Please pray for a clean MRI and also that Phoebe will do well under anesthesia. Hoping our weekend is uneventful and grateful to have our girl home!

Nathan took Phoebe back to the hospital today to be admitted. Another fever this morning signaled it was time to go.

Today found me at Six Flags of all places, with my boys and Jocelyn and a thousand flashbacks of my growing up years. As a kid I divided my time between Wet-N-Wild and  Six Flags in the summer time. A Season Pass was $40 and Mom would drop me off with a friend for the day. That’s why I know every turn on the Mine Train and the scary part that makes everyone scream right before they drop into the tunnel. I know the dank smell of the “Cave” that use to house “speelunkers” but now hosts a “Yosemite Sam” theme, and the Conquistador and the Shockwave and so on. I was surprised so much of the park remains unchanged.

And everything in my life has changed.

My ten year old feet climbed those stairs and walked those pathways and waited in long lines in the sweltering Texas heat. And I keep having these kind of full-circle moments lately. I’m aware that I’m acutely tuned in to the cycle of life now in a way I have never experienced before. It’s almost like I’ve developed a sixth sense.

When we moved to Dallas one of the first things on my to-do list was to get a library card for the boys. The Preston-Royal library near our house looks almost out of place flanked by sprawling houses and carefully manicured lawns. The building is a leftover from the 50’s with big white arches in front and spackled concrete decor on the exterior walls. I remember thinking how it didn’t blend in to the landscape the first time we went and I was glad for it. I prefer an older building with character to a newer one any day.

The other day Mom asked which library we went to. When I told her Preston-Royal, she sighed and told me that she spent many an hour in highschool there writing research papers and book reports. I was fascinated…to think that her grandchildren now curl up with books in the corners of that building which appears largely unchanged since the time she frequented it. They inhabit the same space 40 years later. The next time we went, I could almost see her there at a table, her head bent down over a paper. She looked like she does in that graduation picture in her cap and gown by my grandparents swimming pool. She would have been just 2 years shy of marrying my father, four years from my beginning.

Life is weird like that….beginnings and middles and endings.

Before we left the park today we rode the carousel. It’s a big, beautiful ride, the first thing you see when you enter the front gate. I have ridden it several times across the years, less so as a teen I’m sure, when it just wasn’t cool anymore. But today, I hoisted Deacon up on to a horse on a pole and climbed on the pony next to him. The music started and the circular motion took us around. I delighted in his delight. As I studied the ornate woodwork and painting the carousel showcased, I could see myself, at 8, at 10, 13, riding there, moving through space toward the woman that I am now. That girl knew nothing of this woman, of responsibility, of life’s beginnings and endings…and of these sons. And the carousel became a metaphor for the cycle of life that I understand now for the first time. Once, I entered this carousel a child, today I stepped off, a woman.

All this being aware of death magnifies life. It puts it under a microscope for observation and teaches you to savor, to realize the fluidity of each moment. We move so quickly, almost imperceptibly in and out of seasons and they must be recorded in our hearts…

The last two days we have spent a lot of time at the hospital. Things turn on a dime with Phoebe and just a matter of hours after my last post we were on our way to the oncology clinic for a high fever. All of her numbers looked good except that her hemoglobin was low, so after two rounds of “just-in-case” antibiotics, we settled in at the “infusion room” for a 4 hour long blood transfusion. It’s times like these that I realize how fortunate we are that Phoebe is pretty laid back. Sitting still in a chair for four hours would be tough on any 2 year old, but in many ways it feels like God has specially equipped her with just the right temperament to handle this storm.

I on the other hand, seem to be grieving the loss of my healthy little girl again recently. It is wonderful to have her home and yet it reminds me how much our lives have changed.  I suppose they ebb and flow, the hard feelings that come with cancer. I reorganized her closet and her chest of drawers the other day. There was the little purple shirt with flowers that she wore to the ER that first night. That tiny shirt would no longer contain her rounded frame were I to put it on her. Steroids and lack of excersize have given her a whole new shape. In my mind’s eye I can still see her walking down the hall in the ER in that little shirt and her khaki pants. I gave them to Goodwill. I might regret it, but when I see those clothes they just remind me how much she has changed, how much she has lost already. The little pink tennis shoes with sparkles she wore that night still have dirt stuck on the soles. That dirt reminds me that she used to walk and I leave it there. Now when I stand her up she cries out in pain, her feet have started to point downward and they often hurt. And I hurt… 12 weeks in to 52 weeks of chemotherapy…

And then I read a friends’ blog who has just recently lost her 2 year old daughter to Leukemia and my perspective shifts. She’s still here…with us. I saw her belly- laugh today and she called Nathan in from the other room so she could pray for him. She piped up out of the blue “Mom, I love you SO much!” and my heart did a little flip.  And that is more than some families have tonight. But man, cancer is a beating. I need buckets of grace and super-powers just to do the everyday things. We live tired..it’s a constant state. And sometimes I wonder, “how can we do this for 14 months?”…one day…one moment at a time, and riding on the prayers of those who have the heart to pray for us. So when I say ‘thank you for praying for us’, I mean it in a genuine way. The highs are high and the lows are low and I never knew that I could be so grateful and yet so sad all at once. Phoebe is a trooper, I think it’s her Mom that is a little frayed around the edges right now, lol.

We are watching her for fever closely and if she has another one we will be admitted back to the hospital. They are really going all out to try and keep us home for as long as possible, but three high fevers in three days would be too much. Please pray that Phoebe’s body would regulate her temps correctly (if these are central fevers) and that we would be able to stay healthy and at home a little longer.

~Amey

It’s 12:26 am and Phoebelicious is sitting next to me in bed watching Veggie Tales. Special permission for such things gets granted to cherubic, fuzzy headed girls in this family. It’s been so nice to have her home again albeit, a lot of work. Thankfully we have our dear friend Jocelyn here to help and she has been a huge blessing. We have a rotating “Phoebe night duty” schedule where either Nathan or I sleep with Phoebe and then one of the 3 of us usually sets an alarm to give meds and/or check on Phoebe and the night duty person to make sure everything is okay.  It’s working pretty well so far although I think we’re getting spoiled by having an extra pair of hands around!

We have not taken her out to public places yet because she is neutropenic, but have spent our time at home, going on walks with Phoebe in the stroller or watching the boys jump on the trampoline in the backyard or taking her for bike rides with the little bike-trailer attached. And of course Veggie Tales, who can forget that? Today we had to take her in for a physical therapy assessment and it was decided that she will begin receiving in-home PT, OT and Speech therapy rather than have her inpatient for those during her home time. I can’t imagine having to go inpatient at another facility in between chemo treatments and I was really nervous that they might prescribe that. In the future she might need inpatient PT, but for now we are goign to have it at home.

Tomorrow we take her in for an Echocardiogram and to have her labs drawn and make sure all of her levels are still good. It is so nice to have Jocelyn here to home-school the boys while we run around to all of these appointments. Sure, one of us could stay back with the boys, but it is so much easier to get her in and out of the car with her ng tube and attached bag and all of her stuff when two people are there. I have been praying about a helper of some sort for the future, but am not sure if/how I want to go about that yet. My hope is that we will get into a groove now that chemo is becoming a little more manageable and we won’t need one.

Life is good, and Phoebe under our roof is great. Having her here at home and doing so well has given me enough of a breather that I am starting to find  interest in the things I am usually interested in again. I feel like life since January didn’t leave a big reserve of energy for me to draw from when I was not tending to Phoebe, and it is nice to have enough free space in my mind again to think about things other than cancer. I have been catching up with the election news, pouring over curriculum catalogues, reading up on the benefits of  juicing and feasting on self-sufficient living articles in my Mother Earth News magazine. I am thankful for the “exhale”…and praying for more of that where I can find it.

It’s not normal life, but it’s as close as we can get right now and I am seeing God’s provision around every little corner. The way He provides help just when I am reaching exhaustion point, or how an on-call doctor volunteers to drive to our house to replace a clogged ng tube, or what my children are learning through all of this. He is in it all even when I am too tired to recognize Him there. He never sleeps..