I was lured out of the warmth of my bed into the darkness of the cold house, no visual evidence of impending morning, only my body sensing the pleasure of the quiet hours. I was further drawn out the door into the fridgedness of the coldest hours, those just before dawn. The absolute perfection of white and blue sparkling stars drew me with the sickle of moon wed to its darker fullness. The stars, the closest thing to eternal known to my eyes, they put my life into perspective, its smallness as they whirl through their courses of night and season and epoch.
And I would like to be doing something so very small, putting away the piles of bags and boxes I unloaded from the Suburban yesterday. Yet, the stars silently speak of eternity and my small but mysterious place in the eternal tale and I am compelled to speak. Yes, I am giddy to set aside the muted oranges of fall and Thanksgiving and pull out all of the sparkle and happy flash of Christmas, after all, it is the day after Thanksgiving, the day for as long as I have been an adult, that marks the beginning of Christmas celebration. But yesterday, as I drove those many long miles of I-90, crossing over the Clark Fork over and over, watching clouds hug the dark hills of evergreens and clinging to the waters of Lake Coeur d’Alene, as my eyes savored the endlessly lovely sights, I knew that likely my prayer had once again been answered. “Make my joy complete.” For some reason, this is the prayer my innards cry every time I leave the house on a trip. With our departure in February and the weighty knowledge of Allistaire’s relapse, I wondered if she would ever again enter our home. And while we have now joyously been able to return home several times, every time we leave for Seattle, I fear we may become entrapped, entangled in cancerous circumstances that will prevent her return. But the sun is rising far to the east and the outline of the hills is becoming clearer, and we once again know the joy of awakening in our own home.
As the days before our trip grew near, a sense of nervousness and heaviness began to spread and fill in me. Winter storm warnings made the journey sound treacherous and I imagined being in an accident, rolled off to the side of the road with Allistaire, and we alone, having to make it somehow to safety. We would not be returning to our apartment at Ron Don. There was no sort-of-home awaiting us and I wasn’t excited about the idea of Allistaire and I sharing one room in Ron Don for the next 10 days, if even a room would be available. And more than anything, the bone marrow test and echocardiogram loomed before me. I knew a weakened heart could stop Allistaire in her tracks, unable to move forward with treatment. I had a secret hope that maybe, just maybe, if this bone marrow test was good, maybe Allistaire would be okay, maybe she would make it. Other little challenges of life added to the weighty pile, including a nearly $1,000 car repair bill for a busted differential on the Suburban that appeared to have been someone else’s fault. I wish I could say I’ve learned how to walk intimately with God through all of this. I think there are ways that I have, but I see that He calls me to so much more, so much more reliance on Him. So with heavy, thudding prayers, I asked Him to provide. Just provide God. Just go before me as you have so many times before.
The car dealership that last serviced our car and our differential, took responsibility and paid the bill. We got a letter from Seattle Cancer Care Alliance that the $9,000 bill for donor testing back in May, had been approved to be covered by their financial assistance. Ron Don had a room for us and better yet, friends of a friend offered to let Allistaire and I use the two rooms and bathroom in their basement, only minutes from the hospital. Only hours before I was to head out to Seattle on Saturday the 16th, Sten’s parents suggested that he drive with me and that they could use air miles to fly him back Sunday night. Uh, wow Lord, thanks for the provision. Thanks, thanks. Let me give you thanks oh God!
Then Monday came. Allistaire’s ANC had dropped to 326. I had not seen an ANC so low since our days early after transplant. Only three days before it had been 1710. Oh please, please just let it be because of this cold, this virus, she has. So the day continued with an echocardiogram, a clinic appointment with Dr. Pollard, and a bone marrow test. Late in the day I called for echocardiogram results, unable to wait any longer. Allistaire’s ejection fraction had risen slightly from 50 to 53 and her shortening fraction had risen from 25 to 27 – still a little below low-normal but slightly improved and we’ll take that! Allistaire joyfully talked to Nana and Papa and Daddy on the phone, telling them her heart was stronger, little knowing just how significant and glorious this news was. The crazy part is that this weakening of the heart is not a result of her current chemo which is not known to result in reduced cardiac function. This is from her original chemo, nearly two years ago. Apparently, girls under 2 (she was only 21 months when she began treatment) are hardest hit and she had a number of chemos that are very hard on the heart. They tell you this is possible, even likely, but it’s just hard to comprehend such delayed consequences of treatment. So what a relief that her heart was strong enough to continue. Thank you Father, thank you!
Tuesday we spent at my parents house. It was the first time Allistaire had been able to be there since Christmas last year. It’s only a little over an hour from Seattle, but way to far to have been allowed to travel until now. We had a lovely time but the nagging fear of bone marrow results, stole away some joy of the day. As the afternoon turned to evening, my anxiousness grew. Dr. Pollard had said emphatically that she would have results on Tuesday. I called at 4:30 and was told results were still not back. At last I went to the room in which I was staying and closed the door and opened the Bible. I intended to read Psalm 121, but turned unintentionally to Psalm 20 instead.
May the Lord answer you when you are in distress;
may the name of the God of Jacob protect you.
May he send you help from the sanctuary
and grant you support from Zion.
May he remember all your sacrifices
and accept your burnt offerings.
May he give you the desire of your heart
and make all your plans succeed.
May we shout for joy over your victory
and lift up our banners in the name of our God.
May the Lord grant all your requests.
Now this I know:
The Lord gives victory to his anointed.
He answers him from his heavenly sanctuary
with the victorious power of his right hand.
Some trust in chariots and some in horses,
but we trust in the name of the Lord our God.
They are brought to their knees and fall,
but we rise up and stand firm.
Lord, give victory to the king!
Answer us when we call!
I began praying the Psalm as I read it. Yes Lord, answer me in my distress! Yes, Father, send me help from your sanctuary. My heart echoed the words of the Psalm and then I read the words, “may he give you the desire of your heart, and make all your plans succeed.” Okay, Lord, yes, yes, that would be lovely, glorious, but I know your ways are higher than my ways and my plans, and the desires of my heart may not be what you have for me right now. I continued to read through the Psalm and pray its words but I thought, God, you taunt me. Victory? Victory? How can I hope for such? Why did I have to read this Psalm right now, of all the Psalms to read, I just don’t know how this is going to help me bear the weight of hard news. “Some trust in chariots and some in horses, but we trust in the name of our God.” Yes. Yes. I trust you Father, that you are able to bring healing. My ultimate hope is in you for Allistaire’s life. Yes, Father, I trust you in the face of her possible death. My hope is not in my own strength to cope with sorrow or make sense of why you would allow such woe – I put my hope in you, I entrust my heart and my life to you.
The phone rings and it is Dr. Pollard calling from her twin boys swim lessons. “It’s all good,” she says. The Flow Cytometry is good, no detectable cancer. “It’s all good,” I yell down the hallway. And I laugh and I think on the words of that Psalm and I am humbled by the mercy God has shown me this day. Mercy. So many times it has felt like we are walking to the gallows or her sweet head lays below the guillotine, and then we are led away from that death. Life has been sustained once again. Oh Father. Thank you is so utterly insufficient.
The week continued thus on, with an appointment with GVHD guru, Dr. Carpenter, at SCCA on Wednesday. I think his words were, “she looks like a million bucks.” I’m so sad I missed the open door to correct him, “actually four million bucks!” He was absolutely pleased with how she is doing. Without me even knowing it he was examining her. “Her skin looks great, her hair looks great, her nails look great.” No, he’s not a beauty expert but knows how to spy the signs of GVHD. It was decided that because their clinic schedule is on a 6 week rotation and Allistaire’s chemo is every 4 weeks, rather than coming to Seattle twice a month, he felt comfortable in having Dr.Pollard look for any GVHD concerns at the beginning of her next course of chemo, and then being seen with him at SCCA the following month. The goal is to taper her Beclomethasone which is the steroid for her gut and it that goes well, a few weeks later, begin further tapering her systemic steroid, prednisone. Ideally, Allistaire would be completely off all immune suppression/steroids, either prior or in conjunction with the end of her rounds of chemo. The idea is that if she is no longer receiving the opposition of chemo to her cancer, she needs the maximum effect of her immune system (Graft Versus Leukemia), to give her the best shot at staying in remission. In consulting with Dr. Scott Baker, who has the most experience with Azacitadine (though in the adult setting), his recommendation is to plan for 6 rounds if there is still no evidence of disease at any point. She has received 4 rounds so far and so conceivably could only need the December and January rounds.
Even with the good news and the beginning of chemo on time, I still felt hesitant in my joy, knowing that we were still waiting for cytogenetics and chimerism results. The cytogenetics are normal – there is no evidence of the MLL-rearrangent that has been the marker of Allistaire’s disease. The chimerism results show 100% donor. This time the sample was taken from her marrow rather than the peripheral blood. If something were awry, it would seem likely that it would show in her marrow first. One hundred percent donor! Walls toppling again.
As always, I am now wise enough to know that these results are for the day and the tests are imperfect, but nevertheless, there is SO MUCH to be thankful for!!!! I ran into Dr. Rosenberg, our first attending with Allistaire’s relapse. She said she heard Allistaire was doing great. I was hesitant. She said to me that I should say she is doing great with such great news of her flow cytometry. I was hesitant. Later that evening I found out that little Christian died last week. Christian also had AML. He was diagnosed a few months after Allistaire and relapsed a few months after her. He had a transplant about a month after her. His family packed up and moved out of Ron Don the very same day Allistaire and I did. Despite the language barrier, I saw the joy on their faces. They were going home with their boy. It seemed all was well. That was only a month ago. Christian is dead. I don’t know any detail and my mind cannot fathom it. I saw Dr. Rosenberg again a few days later and told her she was right, I should say Allistaire is doing great. The doctors and nurses, they have seen so many times seen the suffering and death that can be the reality. They see Allistaire in contrast to that. I look at Allistaire and I hope for a normal life for her; I look at her in contrast to “normal” three and a half year olds. Doctors will talk to you of “quality time,” and the truth is I want to scream in their faces that I am not interested in quality time – I want quantity – I want a life time for my child! I know they are only speaking as they must and are speaking according to their body of experience with countless children. I don’t scream. I just nod my head.
Father, thank you for quality time. Thank you that my child looks like a million bucks. Thank you that Allistaire’s energy surpasses that of nearly everyone I know. Eating is a phenomenal struggle. It has been an epic battle but I pray as we get farther from chemo, it’ll get a little better again. She actually gained a little weight, up from 16.3 kg to 16.6 in a week. Another victory, another gift. Our hosts from this past week and a half have offered their home again for Allistaire’s December course of chemo that should start the 23rd. More provision, more bounty.
Remember in elementary school the cheesy thin cardboard images the teachers would festoon the room with for each holiday? For thanksgiving there were always turkeys and pilgrims and that weird conical basket with various fruits tumbling out of it. “The Cornucopia, or horn of plenty, is a symbol of abundance and nourishment, commonly a large horn-shaped container overflowing with produce, flowers, nuts, other edibles, or wealth in some form.” Yes, I’m excited to move onto Christmas, but I would be utterly remiss, if I did not speak of God’s provision of overwhelming abundance – of extravagant wealth, of unmerited mercy, of love that I hear spoken to me not with my ears. Thank you Father above and Holy Spirit indwelling. Thank you Christ who in your death and resurrection, overcame sin and death. Thank you for bounty, both inwardly and outwardly. Thank you for this day, the day the Lord has made. I will rejoice and be glad in it!