I’m not really drawn to the color grey, it being the combination of two of my least favorite colors, black and white. Yet, grey has its virtues. While it may not provide the clarity of white, it does not exert the clamping vice grip of black. Grey makes room for possibility. Grey is a cracked door – a door which may be closing, but is not yet. On the other hand, grey may be an open door – you cannot be sure. This in-between may make you uneasy because you just want to know. Sometimes you want to be done with the guessing and onto the certain. Being relentlessly hounded by cancer, ever snarling at your heels leaves you breathless. At least you are still running. You have not been drug down in that infamous roll of death as with the crocodile, submerged in opaque waters.
“Her cytogenetics are normal, ” Nathalie, the Physician’s Assistant, says on the phone yesterday. WHAT? What does that mean? Her morphology came back normal. This is not surprising since the quantity of abnormal cells detected by Flow was so small – only .01%. A look under the microscope can only measure, with any degree of certainty, down to five percent. But the cytogenetics are all normal – there are no abnormal, mutated cells. There is no evidence of the wretched MLL (Multi-lineage Leukemia Gene rearrangement). I laugh. What in the world. This roller coaster just doesn’t let up. When Nathalie dropped the results down before Dr. Woolfrey, she asked, “what do you make of this?” “That’s unusual, ” the doctor replies. “I need something a little more concrete. I’m about to call the family with results.” Because Dr. Woolfrey was off to a meeting she said she would need to give it some thought and we would discuss it at our meeting this afternoon. I laugh. Well, normal is better than mutated. You can’t argue with that.
Dr. Woolfrey started today’s meeting saying that things weren’t black and white. At this point, we will take the grey. Apparently this sort of things happens every now and then. Very rarely, Flow will show cells with abnormal markers but cytogenetics will come back normal and cannot verify the results of Flow. We have before us a murky picture, one still quite dismal but with the tiniest ray of hope. At this point, Allistaire’s relapse cannot be confirmed and thus we will not be beginning chemo immediately. It was interesting to learn that at other institutions, any amount less than .1%, is not considered a relapse because the number is too small to trust. However, here at Fred Hutch we have the rock stars of Flow Cytometry and they are at times able to detect such small amounts that provide an earlier view of the reality at hand. Dr. Pollard, who joined the meeting via conference call, said that what causes her such concern is that the abnormal cells marked by Flow express the same makers as Allistaire’s cancer cells always have in the past. We were given the option to begin chemo immediately, but together decided to hold off for now and that we will retest Allistaire’s marrow next Wednesday, August 21st. The procedure is scheduled for 10:40am. This allows the sample to arrive early enough over at Fred Hutch for Flow to be run on it and to get results by the same afternoon. This time around, any abnormal cells marked by Flow will be set aside and then individually undergo cytogenetic testing, rather than using a random sample of cells taken from the aspirate. This should give us more conclusive test results. However, even if the cytogenetics come back normal again, if the Flow shows abnormal cells, we will begin chemo. This chemo, Azacitidine, has either never, or very rarely, been used in pediatric patients and thus there is very little data to show its efficacy. It has had some promising results in adult patients, however.
One thing that I learned today that was exciting, is that AML, in particular, tends to be more sensitive to the effect of GVL (Graft Versus Leukemia). What this means is that there is still the possibility that her own new cells may also be able to attack the cancer cells. Today we completely dropped the Tacrolimus. This means we are lifting the weight of immusuppression and allowing the donor T-cells to get in the game a bit more. At this point, though, we are halting the taper of the Prednisone. It is still extremely crucial that her GVHD (Graft Versus Host) be kept under control. According to Dr. Woolfrey, who gave a super cool, smarty pants explanation that I could not follow, removing the impact of the Tacrolimus will have a more significant GVL effect than reducing her steroids. I like it! I’m all for Graft Versus Leukemia – Go donor cells, GO! GO! Another way to potentially ramp up GVL would be to give her a Donor Lymphocyte Infusion (DLI). Allistaire did not receive the full volume of the cells provided by the donor. The remainder been sitting all happy and frozen somewhere on the Fred Hutch campus. A DLI has been shown to be most effective after giving chemotherapy. For this reason, Allistaire would more than likely only be given a DLI after receiving Azacitibine. These cells have never been in Allistaire’s body. They have not acclimated in any way and therefore, may be able to augment a GVL response. There are also a few trials that Allistaire might be eligible for were she to have a greater disease burden, most likely over five percent. The trials also have eligibility requirements regarding length of time since transplant and degree of GVHD. Dr. Pollard, as always, is ever on the look out for all the options available to Allistaire. We are so thankful for her ongoing support!
So here we go again. I will take Allistaire to the “sleepy room,” once again and wait again in that tiny annoying room adjacent. I will shove my fingers in my ears and shut my eyes tight again. I don’t disregard the tangible realities before me. Oh how I feel their weight. I try to picture the marrow, the blood cells, the T-cells, all of it. I get down low and peer into the intricacies of flesh. My eyes scan for the proteins dangling off bulging cells surfaces; wondering at their nature, their true identity. My breath is held as I see the retreat of the Tacrolimus and am alert to the surge of the newly unencumbered T-cells. I thrill, both in terror and in hope at the battle being waged, silently, in virtual invisibility. Yet I do not tarry here. No, I lift my eyes up and call out. I’m looking for you God. I see you there, at work in the very molecules that make up my child. I speak out loud your control over every atom present. I know you are able Lord to do as you please. Yes, incline your gracious, merciful heart to me and hear my plea for you to delight to preserve the life of my girl. May it be that your glory would be most displayed in years upon years ahead for her. But Father – this is your story – our lives are yours and this life is not about college and marriage and vacations with the kids. Fullest life wraps up and envelopes these wee details into the great sweeping tale you are crafting in all its incomprehensible beauty! I yield, oh how I yield, because I am giddy with hope for you to be faithful to all your promises! With shut eyes and deaf ears to the muddled voices on the other side of that door of the procedure room, I stand in the temple of the Lord. I laugh because I see that there is more than one sweet, bulgy cheeked girl, about to have her marrow plumbed again. I look this way and that and see all the threads binding our little lives to that young woman there, and that single man over there. And look: this boy and that older man and that family and that town, and this life and that life and on and on it goes. I bow my finite knee before the majesty of an in-finite God. With head bowed, I smile that we should be included in so beautiful a story.
Sing joyfully to the Lord, you righteous;
it is fitting for the upright to praise him.
2 Praise the Lord with the harp;
make music to him on the ten-stringed lyre.
3 Sing to him a new song;
play skillfully, and shout for joy.
4 For the word of the Lord is right and true;
he is faithful in all he does.
5 The Lord loves righteousness and justice;
the earth is full of his unfailing love.
6 By the word of the Lord the heavens were made,
their starry host by the breath of his mouth.
7 He gathers the waters of the sea into jars[a];
he puts the deep into storehouses.
8 Let all the earth fear the Lord;
let all the people of the world revere him.
9 For he spoke, and it came to be;
he commanded, and it stood firm.
10 The Lord foils the plans of the nations;
he thwarts the purposes of the peoples.
11 But the plans of the Lord stand firm forever,
the purposes of his heart through all generations.
12 Blessed is the nation whose God is the Lord,
the people he chose for his inheritance.
13 From heaven the Lord looks down
and sees all mankind;
14 from his dwelling place he watches
all who live on earth—
15 he who forms the hearts of all,
who considers everything they do.
16 No king is saved by the size of his army;
no warrior escapes by his great strength.
17 A horse is a vain hope for deliverance;
despite all its great strength it cannot save.
18 But the eyes of the Lord are on those who fear him,
on those whose hope is in his unfailing love,
19 to deliver them from death
and keep them alive in famine.
I don’t know you or your family, but my family is constantly uplifting prayers to our Heavenly Father and pleading with Him to heal your sweet little girl. Stay strong, relying on Him who can do far more than we can imagine. Thank you for your realness and for sharing your journey with others, you are not carrying this burden alone! With love and prayers in Christ, The Hall family
I am praying Jai and Sten. Many times a day I’m lifting prayers up begging God for a miracle that I know He can provide. I’m also praying for strength for all of you as you endure day after day in battle.
My prayers continue to follow the journey your family is on. May God’s richest blessings shower you with peace, hope, and comfort!
Standing in Prayer with you
Such glorious beauty not only in the image my mind conjures of you on bended knee before The Master, but so many other knees from so many different faces and backgrounds, united by the like yearning to yield to God’s story, falling into ranks beside you. I also must tell you I have the most beautiful picture of you, clad in heavy armor, walking wounded, slowly under the weight, and coming before the King and falling to one knee in such reverence, the metal clanking against the ground, as you bow your head in complete submission…. You may find it funny, and it does make me smile, but it also emboldens me, encourages me, for I see strength, beauty, resolve, expectation, and purpose… I praise Jesus for it! I love you dear sister and wish the miles between us were fewer, but kneel beside you from MT and feel like you’re so close our armor clinks 🙂
Hello, I’m Jessica Anderson’s cousin and I saw your blog. I am daily praying for you, your little girl and your family as you deal with this incredible situation. In Christ, Alicia
My daughter Natalie told me about your family situation and even from Iowa, we are continuing to pray for your family. May He continue to open doors and provide strength for all of you. Love from a distance.
God is so good. He is also frustratingly mysterious. Thank you for the detailed, specific update – it helps me grasp a tiny fraction of what you are grappling with. Thank you, also, for those pics of your girls together – it helps me grasp what, specifically, we’re fighting for! And finally, thank you for the second-to-last photo, where Allistaire looks like a tiny mee-maw in a muu-muu. It makes me laugh!
I don’t know what to say–what a hard, hard journey you are on…keeping your family in my prayers daily. How amazing to be able to look up to God in all of this and trust in His love.
I only know of your family through prayer, and oh how we can connect when we obey Him and join in this battle, or any battler, through prayer. I am Cindi Wadlow’s sister-in-law, she started sending me your emails a while back asking for prayer for Allistaire. As she forwards them to me I have been praying for Allistaire. God is good, He cares for you and your daughter. I just found out that I could also access your blog so I wanted to let you know I love you guys, and count it as all joy to be apart of the web of prayer that our God is weaving together for Allistaire and for His purpose and Glory!
Many of our prayers are for a quick and easy solution. God is more glorified in His people
when they exhibit His grace under pressure. Good job, Jai! Keep on keeping on…………
What a scary, crazy road to walk! But the wisdom you are aleardy gleaning and sharing is beyond meausure. You guys are constantly iny thoughts and prayers!!
Praying, as I have been, for His peace to be on you as your travel in this darkness. You are doing well, my friend, sharing your hope and flashlight with us. I am encouraged to persevere . I love you girl.
J-it was great meeting you yesterday at Target. I always know I will find a treasure at Target, but its never been human before! I wish we had more time to chat. I will follow this story of your sweet little family. You have the most faithful and amazing attitude!
J-it was great to meet you yesterday! I always know that I will find a treasure of some sort at Target but its never been human before. Meeting you touched my soul. I am following your blog now and I will be praying for your precious child. Feel free to friend me on FB, I’m Julie Fenske Peterson on it.
Thank you for sharing your hope in the midst of every mommy’s worst nightmare. Thank you for posting Psalm 33. Your girls are absolutely beautiful, what precious gifts. I will begin to intercede for your Allistaire and for you, mommy, as you brace for what’s ahead, that you will have “grace to hope”. I wanted to share with you a blog that has been tremendously encouraging to me as we walk through the dark valley of cancer with our son. You may already be familiar with it, but here’s the link : http://kissesfromkatie.blogspot.com/2013/04/she-reaches-for-my-hand-and-smiles.html?m=1.