We pale Montanans approach the line for the ride, tentative in the foreign heat of Florida in May and unsure what this little blue pass will provide. The sign says there is a 60 minute wait. My fingers grope in the zippered pocket of my purse for that thin piece of plastic with the picture of a genie on it. I hold up the pass before the greeter at the front of the line and ask with stuttered speech, where should we go, what do we do with this pass? “Oh, right this way, ” he says and before we know it we are ushered into a line that puts us right on the ride within only a few minutes. To see the now famous princesses of the Disney movie, “Frozen,” Anna and Elsa, the wait was 180 minutes. Upon presenting the blue pass, the one with the grinning genie, we were led alone to a hallway, crafted in all the impressive skill of Disney to look like a castle, the glory of air conditioning soothing our over-heated skin. Again the magic worked and within only a handful of minutes, Allistaire and Solveig were twirling in their dresses along with Elsa and Anna, conversing about how they were both sets of sisters with two different hair colors. The pictures were taken and on we went to the next princess. It only now occurs to me that the genies grant wishes.
It did not take long for us to get the hang of using the genie pass, but every single time, as I held it up before the greeter, I felt that quavering sense that we were getting something we didn’t deserve. I felt the looks of scores of people who had been waiting long in the tiring sun, boring into my back. I could hear their questions in my mind…”Hey wait a second, why do they get to go ahead of everybody else? Can’t you see how long we’ve been waiting? Who are you to get in front of all of us? How do we get that pass?” A look passed between Sten and I. No words were necessary to know we were feeling the very same thing. That’s right, who are we to be so blessed, to be so favored, to receive so much? I hoped some might catch a glimpse of that little white button pinned to my purse strap, with the blue words, “Make A Wish.” Perhaps that glossy red scar on her chest or the too short hair might give clue. Eventually we relaxed more into the role of receivers of grace, of bounty, of undeserved favor and kindness. With open hands we accepted privilege and gift, all with the striking awareness of the paired contrast of undeserved favor and undeserved sorrow. For so long we have sat in small rooms waiting, waiting for that next stab of metal into flesh, for test results, for medicine, for blood, for endless conversations with doctors. For years now our lives have been lived with horrors few see, with sorrow so deep and pervasive, we weep when brushed against. Rarely has the question been uttered out loud, but it is there never the less. Why has this happened to us? Who are we to have our lives so plundered and ravaged? We have been the ones looking on with envy for the beauty and bounty of a simple life lived without the relentless, snarling teeth of cancer.
In short, we were astounded by the outlandish provision of this epic family vacation. When we were getting our luggage into the rental car at the airport in Orlando, a woman in the car next to us asked how much we paid for our car seat rental, so aghast was she at the $130 she had just been charged. I shrugged my shoulders and said I didn’t know, it had simply been given to us. Handing the cashier at Disney World my Visa card for the ridiculously expensive lunch, though the prices were shocking, I knew they were covered by that check given to us by Make A Wish. Money for meals everyday and payment for checking our bags on the airline were provided. On Friday when we at last allowed the girls to go into one of the innumerable Disney gift shops to select a shirt and a toy, I knew that too had already been covered.
Have you ever been to Disney Land or Disney World? One of my favorite things is that everywhere you look, the details have been attended to with exceptional care and thought. There is beauty and magic at every turn. Nothing is ordinary. Everything is over the top and splendid. So it was with our Make A Wish trip. Every last detail had been attended to and not just with some base provision but with over the top care and abundance. At Give Kids The World Village, where we stayed for the week, there was a carousel you could ride on any time of day along with ice cream in unlimited quantities from 7am to 9:30pm. There was a train, put-put golf, horse rides, visits by Mickey Mouse and Mary Poppins and pizza delivery to our “villa.” An amazing pool with a gradual slope inward, allowed even those wheelchair bound to enter the pool in specially designed plastic wheelchairs. Every morning a gift appeared in our villa for the girls and Allistaire has a golden star that was placed on the high ceiling of the turret of the star tower by the star fairy. One hundred and seventy thousand times a star has been placed on the ceiling of the Castle of Wishes, each with the name of a child who has stayed at Give Kids The World. Every detail was considered and planned for with giddy abundance. For this magical week, we simply received and received, hands and hearts full to overflowing.
Despite the exhaustion of long days walking and late nights, finally getting to bed most nights not long before midnight, the girls sprung out of bed, spazzing out with joy and delight. Left up to her, Allistaire would have worn her blue peacock-butterfly-fairy dress every day. The generous folks at Rocky Mountain Toy Company in Bozeman donated these matching dresses to the girls as part of a fund-raising endeavor for Make A Wish by Main Street Fitness also in Bozeman, and just downstairs from Sten’s office. The girls received many a compliment with their matching flashes of blue jewel and toothy smiles. Turns out both the girls also received the very important genetics from Sten and I that relishes roller coasters. Though Allistaire was too short for some of the more spectacular rides Solveig begged to go on repeatedly like Space Mountain, Rickshaw Rapids and Harry Potter, she never the less became a connoisseur of Thunder Mountain Railroad and Splash Mountain. I could go on and on about the delights of our trip but suffice it to say it was amazing. Sten and I most relished being together as a family and seeing the girls so giddy together.
Our other joy was a four-day lay-over through Atlanta to see our Georgia side of the family and most especially my 90 year-old Poppa who we had planned to see last year over Memorial Day Weekend. As with so many things, those plans didn’t work out a year ago. And yet, here we were a year later sitting out in the grass in a circle of chairs under the shade of a massive pecan tree. Both my parents are from Georgia, my mom from Atlanta and my dad from La Grange. Even though I have had far too few opportunities in my life as a dweller of the West Coast to spend time in Georgia, its pale asphalt roads, rolling hills of green and trees, liquid pink sunsets and thunderstorms are dear to me. This was my first visit back since my grandmother, who I cherished, died 6 years ago. As I walked out the door, I knew it could be the last time I see my Poppa alive. Sometimes this stretch of life, with all its gorgeous riches punctuated by pain and sorrow is just too much for me. Sometimes I fear if I started crying I would never stop, so beautiful are its gifts and so painful its losses. Jerry Sittser, in his excellent book, A Grace Disguised, talks of how sorrow expands the soul enabling it to experience more intensely and expansively the joys and woes of this life.
The week at Disney World, Universal Studios and Sea World was a whirlwind and Allistaire did great with her energy level and appetite. With the restart of steroids we expected more of the ravenous appetite we saw when she first went on steroids last July, but thus far I can’t say I really see a big difference potentially because of a smaller dose. I have actually wondered if they even prepared the liquid solution of steroids right given her non-impressive appetite, no seeming weight gain, chubby face or mood swings. Her CT next week will tell how effective the steroids have been against this strange Cryptogenic Organizing Pneumonia in her lungs. Our first full day in Georgia brought one time of throwing up and diarrhea that quickly turned into impressive quantities of near pure fluid. Early Tuesday morning, the day before we were to fly home, I had the frightening thought that rather than being a simple virus that needed to just work through her system, this could be C-Diff given how similar it was to when she had C-Diff in February. With the amazing help of my Aunt Kelli who is a nurse, by 9:20 that morning we were seeing a local pediatrician who, in conjunction with the on-call HemOnc Fellow at Seattle Children’s, assessed her for dehydration, ordered stool samples and wrote a prescription for Flagyl to use in case she turned out positive for C-Diff. My concern was that if she continued at the rate of diarrhea she had been going, she could get dehydrated fast and we would be on a plane for much of the next day. We need her kidneys in good shape! And C-Diff cannot be stopped without medication. It all turned out fine – all test results were negative and I am happy to report that yesterday’s stool was normal. I know you wanted to know that.
We arrived home Wednesday afternoon to a resplendent, green Montana fairytale land. Snow on mountains set against blue skies, green fields, trees finally leafed out, and wild flowers bursting everywhere. I went to sleep and woke up to a multitude of birds in song. I found myself smiling irresistibly at the sound of crickets and delighted at the sensation of cold feet on the kitchen floor, no longer donning Smart Wool socks and slippers. The green of the meadow in front of our house seemed almost outlandish, cloaked in a spray of yellow dandy lions. Calm and joyous peace spread silent and slow to the outer reaches of my extremities. Awww. I have not seen Montana green in two years. No matter how lovely Washington is this time of year, it is no longer my home. No, now I abide here and I have longed with insatiable desire to soak in the invigoration of this green.
It’s taunting really. Like, really, really taunting. Upon arriving home, I have had three days to unpack and repack for Seattle. On Sunday, June 1st, Allistaire and I will again drive the 700 miles west to Seattle. Once again I am told there is no room for us at Ron Don and I am left with yet another unknown. On Monday Allistaire will start her day with Registration as an SCCA patient at 9:15 followed by a blood draw, an evaluation appointment with Joan Suver, our primary and amazing nurse with the Pediatric Continuing Care team, and a meeting with the nutritionist before we head over to Seattle Children’s for a Physical Therapy appointment and to round it all off, a CT at 4:15 to determine the progress in treating Allistaire’s lung condition. Tuesday morning, June 3rd at 9:30am, Allistaire will have her 16th bone marrow aspirate. Wednesday she will have an echocardiogram and then an appointment with our fantastic cardiologist, Dr. Sabrina Law. That afternoon she will have a dental appointment and an ophthalmology appointment. Thursday afternoon at 1:30 we are scheduled to meet with Dr. Carpenter to go over all test results and meet with the pharmacist, though I am quite determined and hopeful to get bone marrow results by Wednesday evening.
All of these appointments comprise the one-year post transplant LFTU (Long Term Follow Up) with the point of assessing the state of her leukemia, GVHD and the health of her organs. Thankfully, her CT on May 5th did not show any evidence of disease outside of her marrow so this week’s CT will not involve oral or IV contrast and will be focused on looking at her lungs. I am thankful this is one aspect her health that is already known. Additionally, while a specialist will assess her heart, eyes, teeth/mouth and physical movement, there has been no evidence of GVHD in these locations based on the evaluation by Joan and Dr. Carpenter when we were in Seattle three weeks ago. The big questions are how her lungs are doing and whether or not there is disease in her bone marrow. Of course the situation in her lungs is serious and must be addressed, but obviously it is that bone marrow test that has me shaking. Allistaire has not had a bone marrow test since late January and since she has finished chemotherapy.
As has been the case so very many times, I don’t know how to pack. I don’t know if I’m coming home next week. I don’t know if this is the last Saturday afternoon at home in a long, long time. With cancer, every step forward into more treatment, is a step into darker and deeper waters. In the same moment that I am relishing the beauty of Allistaire’s gorgeous blue eyes and sweet, sweet little voice, I am scanning her cheeks for hints of pink. Though I long for a higher hematocrit from her last blood test nearly three weeks ago, I resist the urge to pull down her lower eyelid to look for anemia. Well, okay, I gave in once and told myself to knock it off. When she walks around the house, doggy clutched up tight to cuddle as she sucks her thumb, and complains, yet again of being tired, I find myself raging at her. I DON”T want to hear that you’re tired! Fatigue is that canary in the mine, the harbinger of doom. Go find something to do I yell. She sulks off and I continue the yelling and feel explosive emotion swelling my cells, causing my muscles to flex and yearn for bursting as I scream at God, raging and pleading for a normal life. Just a normal life God! That’s all I’m asking for! Dandy lions and crickets and grocery shopping for dinner and a picnic are enough for me. And I yearn for that stately noble peace that allows me to walk back into war with courage and determination. Instead I whine that I really just want to see the hay cut and to sit around a camp fire.
I just want a normal life Lord. Because the truth is I’m looking here, at this plane of existence, at this slice of reality. It still takes tremendous effort, exertion for me to Lift My Eyes, to look up, to look out, to consider lives beyond my own. I have walked up that mountain with trudging steps, so many times, having been asked again to trust the Lord with the life of my child, to be willing to submit to even her death. Dare I claim to walk alongside Abraham? Abraham could have turned away in action from what God called him to and for me there is no action possible that can thwart or determine the outcome of this bone marrow test. Though powerless I may be, my heart is a raging sea that seeks to yield to the voice of the Lord, telling it to be calm. Dare I claim further, to sit with Christ in that garden? Technically it is not my flesh that is in danger of being ravaged, but it is, it is. In Allistaire’s childish innocence, her life may be taken and she would not even know what has been lost. When I told her that if they found cancer in her bones, she might have to get tubies again and be back in the hospital, her little brow furrowed and then calmed as she exclaimed, “But I could bring my guys, right?” Yes, yes, of course Doggie and Piggy can come with you,” I replied. With this she seemed satisfied. My own heart would be utterly torn, not with neatness of sharp knife but with the ragged brutality of predatory teeth.
Let it pass from me Father. Take this burden away from me, I plead and ask over and over. I am so very tired. And perhaps it will, perhaps it will. We have had a year we never imagined would really be. Allistaire’s life has been sustained by more than double. Countless times mercy has been granted. But the past is no guarantee of future circumstances. The only promise is that He will remain faithful to hold me, come what may, and in this way the past lays foundation for future days. So I call out again and again asking for Him to be present, to hold me up, to show me His face. I listen with ear tilted back to those promises and exhortations echoed off the dark evergreens – be expectant – look for the abundance I will bring. My flesh twists and my fist clenches, but I want abundance for me, now. And I look over at Christ beside me in the garden and I see His weeping, the torrent of tears and hear His voice speak, “Your will be done Father.” Why? Why submit? Why yield? “For the joy set before Him, Christ endured the cross.” I can think of no words that more clearly articulate God’s answer for why He allows suffering and calls me to seek His face in the midst of it.
Yesterday I took the girls to the Dinosaur Park, their favorite. I determined to just sit in the sun on the bench. I had just finished reading a little story on Facebook about a brave little soul who willingly endured suffering for the love that would unfold as a result. Marleigh’s mom, Becca, posted at link to it, she whose little beloved passed from this life 5 months ago from AML. I was trying to hold back the tears when I looked up and saw my friend Kelly from BSF. Kelly was God’s grace manifest in the flesh to me that day. Through her tender words, I was reminded that there is already a bounty of life of which I can only catch fleeting glimpses. My Father, through His indwelling Spirit in Kelly’s life, helped strengthen my neck to lift my eyes. God is at work. It is simultaneously ordinary and mysterious. All too easy, I look only at my own life and demand what I feel is my right, forgetting that Christ willingly laid down His own life that life might spring up in all who look to Him. Life Eternal. Live Abundant. Is that not more glorious than the wee life I seek to clutch greedily to with my little finite fist? God only asks that I love Him and love others. Isn’t that ultimately what this is about? Through this fire, I have indeed seen His face more clearly and heard His voice which has in turn fueled greater swelling love for Him. And what if this blood spilled, these tears intermixed, are fodder and seed for life and love in other’s lives? Is that not what it is to love in this broken world? To lay down your life for the life of another is love. Can God so transform my heart into the likeness of His Son’s that I more and more willingly yield to a life broken and spilled out for the blessing of others? For the joy set before me – this is why I look up.
As I wrap up this post and at last go home to pack for the journey that resumes tomorrow, my ocean of angst is a bit more calm. My heart is little lighter. The creases in my face more relaxed. Here we go. Out again into that vast darkness where anything is possible. I cling to His promise to me, that even there, even in the blackest of dark, He will be found by me. He will give me ears to hear His voice. And I believe, miraculously, even there, with quavering, unlovely voice, I will sing praises to His name. He has been good to me.
This is the verse Kelly later texted me:
Psalm 27:13 “I would have lost heart, unless I had believed that I would see the goodness of The Lord in the land of the living.”
As usual, you have beautifully expressed thoughts and feelings about Allistaire and your journey beginning with with her shocking diagnosis. How lovely the girls look during the Florida trip – such joy is all over their faces. Thank you for sharing! God be with you as you return to Seattle and, upon getting back to Bozeman, may you experience the scent of fresh mown hay and a summer without medical worries!
Lovely. Well done at bringing us along for the highs and the lows, the doubts and fears and joys and faith. And one of my anchor verses since my own valley of the shadow has been that and the very next verse in Psalm 27:13-14. “But I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord. Be strong and take heart and wait for the Lord.”
Also? That video? You have a fancy mover on your hands, yes sir!
Beautiful! What wonderful memories you made together! I’ll be praying for you all during this stressful week.
Hi, Jai! I read this late last night and couldn’t wait to show my kids the pictures and tell them of the delightful trip you guys got to take. They had such joy watching your girls’ faces in the pictures, and watching Allistaire dance. Even though I haven’t commented much lately, I have continued to read and share your news with my family. Allistaire is like a little friend to them, even though they’ve never met. (My 6 year old, Bella, said to tell Allistaire she loves her!) And they loved Solveig’s missing teeth. 🙂 I have never desired to go to a theme park, but reading your words and seeing your pictures made me literally cry with joy that you guys were blessed with such a fun family vacation. 🙂 We’ll continue to pray with and for you guys! (and someday, I wish I could give you a big ol’ hug in person!! It’s been too long!) (As a side note, my 3 year old, Hadassah had really long hair and we were talking about getting it cut and donating it to Locks of Love. I was explaining to her that it could be made into a wig for a little kid who had lost their hair like Allistaire and she asked if she could get her hair cut just as short as Allistaire’s is. :))
I am so glad you got a bit of magic in your lives. It sounds like a wonderful trip where you made wonderful memories. Your family will continue to be in my thoughts and prayers as you continue onto the next step.
Hi Jai! Looks like a great trip. 🙂 If you need a place to stay while you’re in Seattle, we are just a stone’s throw from the hospital on 15th. Xoxo Amy & Lee Grooms
I love your pics from the Wish trip! Reminds me of our trip 2 years ago. Great times. And yes, hard to believe we were worthy of such special treatment, but what a wonderful treat.
One thing I learned through Anthony’s 3 1/2 years of treatment for ALL was that when we went to Seattle for his monthly chemo (after his initial 14 months there in Seattle), I would bring 2 outfits in a suitcase. If he had any abnormal test results, I knew that my husband would be there the next day or even that same day, and he could bring more necessities then. I know that we live a LOT closer to Seattle than you do, since our drive is only 3 hours. But, if your husband or family would head over within a few days in that kind of dreaded event, 2 extra outfits is plenty, especially with the laundry upstairs.
Good luck with all your appointments this week! I love our Hem/Onc team.
What a wonderful time! So thankful for Make a wish and all who contribute to it! What a humbling thing to be given the opportunity to be granted a grand wish! So very glad you all got to go and enjoy yourselves immensely! Much deserved! Our trip is in less than two weeks!!