It’s been a busy couple of days. We ventured out of town this weekend to visit my parents in North Texas and at bedtime the first evening was when we realized we had left Phoebe’s water pump charger at home. It never fails, we end up out of town without an important medicine or in this case a battery charger that we desperately needed. We decided that we would try to make a go of it by just using the pump at night when she needs continuous water through her ng tube and we would manually push water into her tube through a syringe every fifteen minutes for her two day bolus’. Fun.

Everything was going according to plan until the 2nd night when I dropped Phoebe’s DDAVP vial on the kitchen floor when I was drawing up her bedtime dose. It smashed to pieces and I was fortunate to be able to get the last few drops out of the smashed bottle, enough for her bedtime shot dose. But DDAVP is what regulates her kidneys and urine output so she MUST have it every twelve hours. Which led to a midnight conversation with our endocrinologist in Dallas and a prescription fill at a 24 hour pharmacy 45 minutes away. Take note: if your child has cancer, living near a 24 hour pharmacy is a must. Nathan was going to leave early in the morning to fill the prescription before her next shot was due, but at 2 am her water pump battery began to beep letting us know it was dying. Phoebe can’t make it through the night without a water bolus, so we either had the option of setting our alarm for 15 minute intervals and pushing water through her tube for 6 hours straight or Nathan driving her the hour and  15 back to Dallas to plug her pump in.

So, At 2 am my husband; the best father in the world, loaded Phoebe up and drove 45 minutes to Denton to pick up her DDAVP med and then home to Dallas to hook her up to her water pump. At 7 am she spiked a fever and at 8am it hadn’t abated, so off to the ER he went with her. This man deserves a Gold Medal in being a servant hearted husband and father..Phoebe was given antibiotics as a precaution and then admitted when her sodium level came back high because they wanted to regulate her sodium for her MRI today. So, Nathan’s Dad came and got the boys and I in North Texas and I traded places with Nathan at the hospital.

Without making a long story even longer, I’ll just say that I spent my night arguing with the new resident doctor about water levels and trying to get Phoebe’s saline bolus switched from 1/2 normal to 1/4 normal and sneaking Sprite to her. At 6 am when all of their efforts failed and her sodium was going UP rather than down (which is the whole reason we were admitted in the first place) he finally let me run the show. I told him I wanted 70 mls in her ng tube water bolus and her IV saline reduced and I proceeded to give her water pushes through her syringe when no one was looking. This is such an uncomfortable  position to be in sometimes, but I have discovered that she suffers when I don’t advocate for her. Who knew we would have to be so “on our toes” in Phoebe’s care  regarding even the medical side of things? I find that most doctors will say “You obviously know your child better than we do, BUT we want to do x,y,z and see if that works” and when I already know AND TELL them that we have tried x,y and z before and it doesn’t work and they don’t listen, what do I do then? Grrrrrrrrrrr.

So, at long last, her sodium is on the down swing thanks to the help of a nurse that knows me and Phoebe well. She told the resident to hand over the reigns 🙂 Lol. I am not trying to sound prideful, but it really IS true…when it comes to managing Phoebe’s Diabetes Insipidus, we do a better job than the residents on the floor. End of rant.

Right now Phoebe is in the playroom painting with her friends who have Leukemia. I have missed being around the other cancer parents here. There is an instant, overwhelming connection with a parent who has a little one with cancer. The woman I met today has been walking through chemotherapy with her 3 year old daughter since 2010. Incredible. The other sweet family we always encounter in the halls has a 1 year old with 2 separate types of Leukemia. She is now on experimental drugs. My heart aches and swells in this place. I want to wrap those parents in a big hug and cry with them, but I rememeber my reaction when others have done the same to me. At times, the veil is so thin between maintaining composure and completely going over the edge and pity from others can shatter you into a thousand tiny little fragments. So, I maintain my composure with them so that they may maintain theirs. We both understand.

It is noon now, and soon Phoebe will be be taken down  and prepped for her MRI. She will be intubated and sedated and it will take 2 hours to complete the procedure. She will also receive her intrathecal (spinal) chemotherapy injection for this next round. We will have results shortly after the MRI. Please pray that she does well with the entire procedure and of course for No Evidence of Disease.  MRI days hold a lot of anxiety and also a lot of joy when the results are clear. But we also understand the gravity of these test results should they be bad. Thank you all for standing with us.

~Amey

Phoebe is doing great. She has handled this last round of chemo very well so far and her counts were still up at her clinic visit this morning.

One of the most exciting things going on with this sweet girl right now, is that she is fast on her way to WALKING again! Phoebe LOVES her physical therapist and has been so motivated to get back on her feet. Today she took four steps from her stool to the couch bearing her own weight which is just incredible for her, and was absolutely stunning to witness. When she finally receives her orthotics I think she will be walking in no time. She has had some trouble bending her knees in order to sit back down because her muscles are so tight from lack of use. Please pray for that as she moves forward and works hard to get back on her feet.

Here she is with her big brothers helping her during a recent session:

Nathan’s Dad has been with us for the past couple of weeks and he has been a huge help. Phoebe and her Grandad go for long drives when she is feeling emotional and that usually calms her down. He has also done his time at the roller rink with the boys, taken them to the movies and played more than his fair share of board games. This Texas summer heat is obnoxious and I am thankful to have the extra help to keep the boys from bouncing off the walls. I think we will all be glad to get back to the country one of these days so that the boys will have some useful work to put their hands to on the farm. Last year their lives were full of farm chores; collecting eggs, milking goats and cleaning the goat dairy, taking care of pigs, slaughtering chickens and turkeys, harvesting vegetables and working the farm stand drop-off sight. They are ready to get to back to work and I think we are too.

I always joke that Nathan is a frustrated farmer. He lives, eats and breathes aquaponics, ie: the simultaneous raising of fish and vegetables in a  closed system. He has a small system set up in our back yard and we are enjoying the tomatoes, peppers and cucumbers it has produced lately, but he is so ready to expand and set up a large scale system. We are itching for dirt of our own, soil to amend and prep, a garden…chickens and fresh eggs etc. We are praying about our next step and if and when God would have us move while Phoebe is in treatment. Mostly, we are realizing that this could be a very long road, and that we need roots and our kids needs roots and community and support beyond what is possible here in Dallas. Plese pray for us, that God would give us discernment. It’s always said that one should never make big decisions in the midst of crisis, but that is a luxury we do not have.

On August 13th Phoebe will have her next MRI and she will also receive her spinal chemotherapy. Three days later she will turn 3! On August 21st she will go in-patient and begin this next round of chemotherapy. She will be receiving some of the harsher medicines this round so please pray for her.

I am feeling better today than when I last poured out my heart on here. Of course that all changes depending on the day. Such is life going through cancer treatment. I am cherishing Phoebe’s good days and trying to live in the moment. I am leraning that living completely in the moment is a discipline that must be learned. I have to be very purposeful to bring my thoughts captive or else I can be carried away on a wave of grief at any moment. I can get way ahead of God and imagine a future without the grace to bear it all. I have to “cast down foolish imaginations” and be fully present. This is hard work. Some days I fail miserably and am easily overwhelmed. Other days, joy is palpable.

Thank you all for your words of encouragement, words of permission, prayers, love…

I don’t know what to say…I just know I’m supposed to be here writing. Two different conversations and a package with a letter hand delivered to my porch this morning have confirmed as much. Honestly, I’ve been avoiding the blog. Yes, Phoebe is at home and life is busier in a different kind of way than when we were living in the hospital, but really, life just kinda hurts right now, and coming here to write usually entails soul searching and tears and hashing through emotions and that’s not my favorite thing to do in a public forum. Letting your soul hang out is a dangerous thing, and it can attract a lot of unsolicited advice, but if I’m supposed to write I don’t want to be silent.

I guess lately I’ve just thought my messy feelings aren’t worth much screen value. How could they edify anyone or be encouraging? How could it be beneficial to anyone for me to come here and process out loud when I can’t even seem to pinpoint how I feel? I don’t know, but then I’m always surprised to meet people who are praying for Phoebe or following our family’s story here. When I type it all out, I see maybe 10 or 15 people in my mind’s eye who might be reading. When I receive a letter of encouragement like I did this morning from a complete stranger, it reminds me that God has used this painful season for good and that for me to be silent is prideful and short-sighted.

So, I’m pushing back the shroud, peeking around the curtain to see if it’s safe to come out. Nope. It’s not safe, but then “safe” is overrated and self protection doesn’t allow God the freedom to use me for His glory. To be insulated from pain is nice, but it’s not honest and I can only hide for so long.

Cancer hurts.

It steals.

It has brought us to our knees and left us running ragged. My Benjamin has a “sadness” he can not explain. My Averic says “something is missing…life just feels like something is missing.” My Deacon has emotional pendulum swings and separation anxiety from Mom. My husband is weary from long nights with Phoebe.

I can see the aftermath of last night’s “sleep” when I walk into her room. There are 5 small bowls of different kinds of food and a stale waffle on the bedside table. Nathan was up all night, trying to help her find “just the rigth thing” that didn’t taste metalic from the chemo.  Finally she fell asleep, only to accidentally pull out her tube and have to have it re-inserted. At 5 am she was ready for the day. This is typical.

The daytime continues much like the night. She is emotional, demanding, asks for 4 or 5 different foods before she either gives up or finds something she will eat. We prepare food constantly. She wants in her high chair. She wants out of her high chair, she changes her mind every five minutes. She wants to be on the floor. She wants to sit with Grandad. She wants to sit with Mom. She wants to leave. She wants to stay. She cries. And in between all that, she is happy as a lark.

And therapies. Four times a week we must be here for therapies. And clinic on Tuesdays and trips to the lab most every other day to check blood sodium levels.

Tethered.

For 10 years we have pursued Mexico and a life of ministry there. “Practice summers” in Reynosa, 9 months of language school, 3 years in the interior with YWAM Guadalajara. An internship in 3rd world agriculture and a dream of pioneering a training farm back in Mexico.

And then the paleness, the lethargy, the random vomiting. The red-herring “intestinal parasite” as the tumor expanded each day…and then the diagnosis.

And what now? What about Mexico God? Did we miss it somehow? Did we misunderstand? Who are we now? Where do we go? Do we make a life in Dallas? How? We need to be close to the hospital for now, but just”doing cancer” feels like waiting for the ax to fall. We are ready to move forward, but how? And when? Where? Phoebe will need endocrinology care for the rest of her life. She will need MRI’s and hormones and DDAVP shots and pills. And that doesn’t fit with a farming life in rural Mexico.

Tethered. Immobilized. Trapped. And no certainty of the kind of life that awaits us.

These are the very real things that I struggle with each day. My life experience and my heart tell me that God is in control. That this did not take Him by surprise. That He has a plan.

But my emotions are in a tail-spin. And I am powerless to “fix” Phoebe and powerless to insulate my boys from the pain, and powerless over our future. So much hangs in the balance. So much is unknown.

So, this is the real stuff of cancer. Some days I feel full of hope and I know that Phoebe will beat AT/RT and life will be okay. Other days I merely survive because all feels hopeless.

I’m clinging to the hem of His garment….the only place it feels okay to be tethered.

Phoebe watches the boys jump on the trampoline

Deacon and Phoebe painting

Phoebe goes to clinic

Phoebe started her 9th round of chemo today. This round is the same as the last; one push of chemotherapy through her port this morning, followed by oral chemo each night through her ng tube (here at home) for 5 days, and four weeks until her next chemo. This was a pretty uneventful round the last go round so I am praying for the same this time. Her hair has started coming in and she has the sweetest little downy fuzz all over her head. Our oncologist said it wouldn’t be like that for long because she starts the “hard stuff” again on round 10. That reminder was deflating to say the least. It has been so nice to have a semi-normal life these past few weeks, with lots of time at home and very few ER visits. I wish we were in the home stretch…I wish she was done with Doxorubicen..the worst of the worst. But on we go..

I don’t think I’ll ever get past how wrong it feels to inject poisonous medicine into my daughter. Tonight when I was administering her chemo through her ng tube I was again overcome with how counter-intuitive it is. Catch 22.

Phoebe has been so sweet lately, singing and laughing at her brothers and cousins, enjoying herself. It’s been good for my soul, for everyone’s. Her at-home physical therpy sessions have begun and yesterday Phoebe crawled over to the couch where her Grandad was sitting and STOOD UP on her feet! COMPLETELY unassisted! Nathan yelled for me to “hurry!” and I couldn’t believe my eyes when I saw her! She was tilted to the side and unable to bear her full weigth on her left foot since it turns in badly, but she had taken the initiative all by herself and pulled herself up! So today during her physical therapy session she did lots of assisted walking and pulled herself up tp standing two more tmes. I am so proud of her. She is working so hard, and at last it feels like walking again is within reach. I am thanking God for the small, everyday miracles….they are a lifeline for us right now. Progress of any kind, means so much.

The other day we were at Barnes N Noble and Nathan caught Phoebe in one of her “moments” when she burst out in song. We thought you would appreciate seeing her in all her glory. And nevermind my jabbering in the background. I didn’t realize he was videoing at the time. 🙂

Sweet Girl….

and here are a few recent pics….

The Dallas SWAT team signed this poster on the wall and had it framed and sent over for the boys. They LOVE IT!

Phoebe and Mommy fall asleep..

Deacon and Phoebe share a book at Barnes N Noble..

Thank you all for your continued prayers and support, letters, e-mails, care packages…we are blessed to be loved and cared for by so many.

~Amey

All is well in the Fair household. Life has been moving along at a “normal as can be” kind of pace and that’s been nice. Phoebe is doing so good…her eyes are bright and she is so animated lately, it’s beautiful. It has been almost four weeks since her last chemotherapy and you can really see the difference in how she feels.

Yesterday morning as I shuffled through the kitchen to put the coffee on, I heard Phoebe singing LOUDLY in her bed: “HOLY, HOLY, HOLY, LORD GOD ALMIGHTY…EARLY IN THE MORNINGGGG MY SONG SHALL RISE TO THEEEE” and then “I PUT MY HANDS UP IN THE AIR SOMETIMES, SINGIN’ AYYYYY-OH!” I laughed out loud and then peeked in through her door to find her belting out her song while Nathan snored away peacefully right next to her. It was awesome.

Her ANC is down to 4,000 so they were right when they told us that her counts would be down for longer this round. On Tuesday she will begin her next round of chemo so we are praying for her counts to be in a good place by then.

We FINALLY got all set up with Phoebe’s at-home health care. She will have her first at-home physical therapy session tomorrow and this will begin her scheduled therapies 3 times a week. We are still waiting for her speech and occupational therapies to get started, but physical therapy is the priority so that she can begin walking again. She was fitted for her orthotics last week and I am anxious to see her wearing them so that we can get the ball rolling.

Benjamin (10) had an MRI on Tuesday. He has frequent headaches, most likely related to his blood disorder, but with Phoebe’s condition they exhaust all possibilities to make sure we are not overlooking something serious. Phoebe’s cancer is not hereditary, but both Nathan’s sister and my Dad have had (benign) brain tumors removed when they were children, so anything is possible. God help us if that is the case. I am not worried, and actually glad that they would look into it to this degree just to rule things out.

Nathan’s sister and her husband and children are here for a week and we are enjoying our visit with them. We spend our evenings sharing stories from the mission fields where we serve. They serve in Liberia, Africa and although Mexico is a completely different continent and culture, many of our experiences are similar. I thank God often for the family I married into. Nathan’s parents also served in missions in Eastern Europe for 16 years and Nathan lived overseas until he was 10. I love listening to my father in law share stories with my boys about what it was like smuggling Bibles behind the Iron Curtain during the Cold War. I am thankful for the heritage my children have.

I apologize for going so long between updates…life is taking on a more normal shape and I am often relieved to have nothing to report! 🙂 Phoebe’s next MRI is scheduled for August 13th, three days before she turns 3. So we soldier on, trying to be as normal as possible, and enjoying the small things. The small things are the big things…they really are. Thank you all for praying for our family, some days we just hang in there, other days are full to overflowing with goodness and gratitude.

~ Amey

For all of you who have been following Maddie and asking me for updates, her Dad posted this this morning…

Chris Schafer

It is with such deep sadness that I have to post that our little Maddie passed away this morning.  She was with her mommy and daddy at home and it was very peaceful.  She was so brave, she fought so hard and will always be my hero!!!  We love you STAR!!

I think this is the longest span of time I have gone without posting. The most obvious reason is that Phoebe is home and life is moving along, but school is happening alongside a lot of fun summer activities, and my sister in law and her husband and children have been visiting from Liberia, Africa where they serve as missionaries. This was their first time to meet Phoebe and our first time to meet their second daughter, Myriam. It was so nice to see them after three long years and the boys had a wonderful time with their cousins.

Phoebe has been doing well for the most part. We did have to make 3 unexpected trips to the hospital this past week; her ng tube got pulled out on two separate ocasions and then we had an ER visit the other night because she had a qustionable mental status upon waking from her nap. At the time, we knew her hemoglobin could be low and that she was also likely experiencing some drug withdrawals from her Methadone wean. It’s always deflating to decide to go to the ER late at night and know that we will be there for several hours just to have her labs checked, but with the possibility of a dangerously low hemoglobin level, we couldn’t risk it. I don’t know how we would do this if we didn’t live 15 mins down the road from the hospital.

Now that Phoebe is home more often and life has settled down a little (a very little), I think the reality of this whole thing has taken root in me. I feel a pervading sadness underneath the surface most always. I know some things now that I didn’t really have time to process before. For instance, I now understand that come what may, if we are a year out, or two or more from Phoebe’s chemo treatment, we will live our lives with future MRI’s and their possible life-altering results forever. I know now that secondary Leukemia is a possibility down the road. I am aware that Phoebe’s fellow AT/RT friends are slipping into eternity…some of these, the very first families to reach out to us when Phoebe was diagnosed.  These things weigh heavy in the quiet spaces of my life. I prefer distraction.

I also have realized the ways that Phoebe has changed. Her cognitive abilities are wonderful, her intellect intact. I could not have hoped for a better outcome from her brain surgery. But…she no longer has the attention span for books. She will not allow me to read to her or thumb through the pages of a book just looking at pictures by herself as she used to do. She has no attention span even for her favorite shows…she can not focus long enough to watch or follow a story line. The steroids that she must take for the rest of her life render her impatient, demanding and prone to mood swings. I miss who she was before, even as I love her now. These are the little losses strung out over this cancer road. These are the subtle ways our lives change a little every day. The medicine that kills her cancer, kills her attention span and healthy cells.

When Phoebe was first diagnosed, we looked into the Burzynski clinic that several people had mentioned to us. There is a popular documentary out right now about this controversial man and his cancer treatment that utilizes antineoplastins. We were warned to stay away by our neurosurgeon. He said it was the only piece of treatment advice he would give us. But, we researched, even called the Burzynski clinic for information. When they heard Phoebe was 2 and had AT/RT, it became apparent that they were not convinced they could help. Upon further research, I dicovered that they have a 0% success rate in treating AT/RT cancer. So, that was the end of that. Next to Gliomas, AT/RT is the big, bad, nasty childhood cancer. Thus we chose the Dana Farber chemotherapy protocol which has a 50% success rate in treating AT/RT cancer.

We made the only choice there was to make. But waiting for chemo to work or cancer to kill is a feeling akin to being trapped in a small, dark space. I wish I could expalin it better. Life is on hold. That’s what I mean. And “doing” cancer is maddening. The not knowing is of course the hardest part. Who will I be when this is all over? Well it depends on how it ends, I think to myself. But no, I’m forever changed either way. We all are; Nathan, myself, the boys…Phoebe. How will God shape this thing for our good, for us, who are called according to His purposes? All this growing thick skin is for the birds and I’m tired.

And that’s what I feel right now. I feel quiet. And never quite at ease. And unwaveringly grateful for the cherubic little girl asleep in her canopy bed right now…breathing and dreaming.

Tonight I am remembering these lines from Rilke’s Book of Hours, Love Poems to God….

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

God speaks to each of us as he makes us, then walks with us silently out of the night.

These are the words we dimly hear:

You, sent out beyond your recall, go to the limits of your longing. Embody me.

Flare up like flame and make big shadows I can move in.

Let everything happen to you: beauty and terror. Just keep going. No feeling is final. Don’t let yourself lose me.

Nearby is the country they call life. You will know by its seriousness.

Give me your hand.

~Rainer Maria Rilke

Phoebe had all good news at clinic on Tuesday! Her counts were still hanging in there and her sodium was a perfect 140. Here she is with her Daddy.

Just another day at clinic, waiting to get my port accessed…

Did I mention that I got to go swimming the other day?

This is how I roll when I’m doing my watercolor painting..

Deacon is my favorite painting buddy.

And one last thing before I go….

These are the days….

Phoebe picking up her veggies at the Farmer’s Market…

A water sprinkler wrestling match between brothers….

Look at those MUSCLES!!

And don’t forget MY muscles!!

Hmmm…what kind of trouble can I get into this week?