There is a little girl I know who is on the move. With eagerness, she swiftly goes from one activity to another. The other day she continuously informed me that she wanted puzzles – two puzzles – an elephant puzzle. She wants to play blocks, paint, ride her bike, go for a walk, dance to music. I listen with a smile to her sweet voice as she sings in the bathtub or tells me of her desires and ideas. She laughs and tells me she is just teasing me. Silly voices and silly expressions, she engages all who encounter her. The skin on her back, arm pit, hands and neck all continue to heal and return to their natural color of healthy flesh. Her hands no longer shake and her gait as she walks, is more and more steady. She is unfurling.
More and more we leave behind the flying buttresses that have sustained her. The mighty IV pole has been reduced from 8 pumps to a mere three. She is taking all of her meds by mouth that is possible at this point. No longer is she on Lasix, as her fluid levels have mostly stabilized, making it necessary to only weigh her once per day. Her blood pressures are almost always now in the appropriate range. She has begun to eat a little and drink water. Apparently it may take months for her appetite and taste buds to return to normal as a result of the mucositis. The whole milk that was once one of her main sources of calories and fluid intake has been utterly rejected. It is a challenge to find things that appeal to her. Thank goodness for Burgermaster fries and ketchup which are enjoyed at least daily.
As for infections, Allistaire thankfully tested negative for the nasty C. Diff. However, she still has some seriously runny diapers. This, combined with her minimal eating, suggests to Dr. Burroughs that she may have some GVHD (Graft Versus Host Disease) in her gut. The plan was to scope her late in the week down from the top and up from the bottom. I was eager to have some more concrete info so that I would know better how to deal with the challenge of her eating. Sadly, despite Dr. Burroughs skillfully managing to get Allistaire on the GI schedule for Friday morning, the procedure was abandoned due to a new development. Tuesday night Allistaire coughed a few times in the night and threw up once. Wednesday night the cough returned along with a very stuffy nose. The overnight hospitalist doctor instituted “viral isolation,” and ordered a nasal wash and a chest X-ray for the next day. While the X-ray looked great and clear, the nasal wash confirmed that she now has rhino virus. Of course this is a bummer, but I was just so relieved that she was negative for RSV. I swaggered a bit in my heart as I gloated over her hefty ANC of nearly 2400. She can handle a bit of rhino virus I thought to myself. It was decided to wait on the scope until early this coming week, however, because of the concern of anesthesia when she has so much nasal congestion. Dr. Burroughs did not think her possible GVHD symptoms are of such significance that we can’t wait a few days to see what direction things head with this virus.
Friday morning I awoke to the spectacular number 3234. This is the highest ANC Allistaire has had since last December. I noted too that her hematocrit no longer had the little “L,” by it denoting that is was low. No, her hematocrit had reached 34. In rounds that day I asked just how high it would go. We were at last seeing “normal,” blood counts. Bit by bit, I have allowed hope to creep in. Images of Allistaire alive and healthy are beginning to take shape.
That same day, I met with Dr. Burroughs, our BMT doctor, Dr. Lux, a new BMT fellow and Dr. Pollard, our Oncologist who has been with us from the very beginning. I had asked for the meeting because I realized that Tuesday, July 16th is coming. It had quickly become clear to me that we are not just waiting to get bone marrow results. Next week we could be packing to go home. I was aware that I had no idea what level of success we needed to continue forward.
Zero percent. We need there to be no cancer detectable. Such an unimaginably tiny number. Such a seemingly impossible number.
If Allistaire has cancer that is detectable at Day +28, she is essentially done. If the conditioning chemo and the radiation and this new marrow together hasn’t sufficiently destroyed the cancer, there is no weapon left. I have had a doctor say to me, “we have many weapons in our arsenal.” On this day, Dr. Burroughs used the word, “armamentarium.” We have been at war with this insidious destroyer for a long time and we are at last coming to the end of our weaponry. We may be approaching the end and despite the logics of it all, it still comes as a shock. It is the knowledge that with my eyes I may see a vibrant, lively little girl, but the science may tell us that this view is short-lived and that the gluttonous cancer cells are on the move seeking to devour my beloved. Haven’t I always known this? Haven’t I known this reality so long that it seems “always.” Surely, I knew before one step into the transplant process, that this was it. This has been our last chance, the last thrust to take ground and come out victorious. And yet, I am disoriented. I don’t know how to go about the day with the view of a cheery little face ever-present before me and the awareness that we may be taking her home soon. The past several days we have been given passes out of the hospital. I showed Allistaire our new Ronald McDonald House apartment. I showed her each of the rooms and the bed where she would sleep and where Sissy would sleep when she comes to visit. I tell her of the life we may soon live out of the hospital and I pray it is here in this strange apartment and not at home. At this point, Allistaire at home in Montana would mean we are assured of losing her.
She just seems too alive to die. Surely she is just too loved to die. How I desperately wish these were true. The odds are not in her favor. Yet, I was encouraged by Dr. Burroughs, who as a self-proclaimed realist, said that she is hopeful. She says that Allistaire is looking amazing and that all her blood counts and tests look excellent. Dr. Pollard added that in her view, if the bone marrow is not 0% blasts, but less than .5% (please note the “.” in “.5%”), then there may still be hope. It might still be possible to turn down the immunosuppressants, allowing the new marrow to get a bit more ferocious, and give her the chemo, Azacitidine, which interferes with RNA and DNA in the cell, and get her into a “disease negative state.” “All hope is not lost,” she says, but my heart just sits so heavy.
Saturday morning Allistaire’s ANC dropped from 3234 to 780, and with it my heart went plummeting down. From shiny glory to darkness and limp. I woke from the night with a smile and thoughts beginning to form of what the day might look like. But with the news of this ANC, heavy, black clouds formed instantly overhead. How weary I am of having countless days and plans overturned by sorrow. It could be because of her rhino virus. Yeah, yeah, yeah. Maybe. When Dr. Burroughs called a few hours later, she said that this could most certainly be a result of the virus. Often, the body can hold steady as it mounts a response against a virus but within several days, the ANC can take quite a hit and stay there for a week or two. She noted that this may especially be the case with this newly established, not yet fully rooted, immune system. “I am not without hope,” she says multiple times.
Hope. What is it? It often feels like desperation for something to be true that we want to be true. We shove all of our desires into the confined space of what we imagine for ourselves, for our lives, and we call it hope. We hope, oh how we hope…for this or that. I hope with all that is in me that Allistaire will make it through this. Every sinew in my body strains forward in desire to see my sweet girl healed and alive. I want to be done with this. I want to be on the other side of this madness, Allistiare’s jubilant little body bobby around as we walk hand in hand. I don’t want to live this precarious life where any moment the winds can turn and upend my life. My hopes feel flimsy in the face of the uncertainty of life – their bulk can not withstand the force of realities outside of my control. Control. I really don’t have any of that. Any control I think I have is illusion. When things go as I hope, it appears as though my control has accomplished something.
The terrifying truth is that God is in control and He may not always act according to my “hopes.” He chooses according to His will. He acts according to His view of good. But it feels like terror – can I really cry out for help to the same God that would take the life of my child? How can I trust someone that allows the flesh of a child to be ravaged? It comes to this: in one action God made known for eternity His perfect goodness. Not just His righteousness, His justice, but His outlandish compassionate grace. I fix my eyes on Christ and take in the full view of who He is. Christ in the Garden of Gethsemane, Christ on the Cross, Christ risen, Christ ascended, Christ behind the curtain, Christ at the right hand of the throne of God the Father. I look to this Christ. I have confidence in the goodness of God – but again, not just His goodness, but His kindness and gentleness and compassionate heart. This same heart that called His Son to die. I consider the God who asked His only Son to allow His flesh to be ravaged, who asked His Son to experience separation from His Father. Yes, Christ asked for God to take this burden from Him. More than once, Christ asked His Father – “take it away!” But Christ submitted to the Father’s will that looked like brutality. Christ submitted to the Father because He had tasted of the Father’s resplendent goodness, and for the “joy,” set before Him, He endured the cross. It is both because I see the Father through the eyes of Christ, and because of all that was accomplished as a result of Christ’s submission, that I too can endure.
If I put my hope in lab tests and bone marrow results, I can be constantly whipped around. And I do – I do hope for good results and when things do not turn out as I so want, I feel barraged and tattered. But I am not undone. I am not destroyed. My peace is not stripped from me. I yet have hope! My hope is rooted in Christ who tore the curtain and made a way, no, is THE way, that I can now boldly approach the throne of GRACE! In the book of Hebrews it says that we, heirs of what has been promised, we who have fled to take hold of the hope set before us may be greatly encouraged. We have this hope as an anchor for our souls, firm and secure. Yes, I am constantly being battered by these winds of disease and brokenness and sorrow, but I am ultimately secure. I call out to the same God who has the power to still the storm and who may not, because in one action, He made known for eternity, that He loves me. He loves me! Christ on the cross – Christ’s flesh ravaged – Christ’s experience of being forsaken – it was all to make a way for me to be bound to the God of the Universe for all of time!. It is not only that God is good, but He bends low to carry us. He condescended to walk on this broken wreck of a world, because He is a compassionate God. “For God so loved the world that He sent His only Son, that whoever believes in Him, will not perish but will have eternal life.” John 3:16
Like Christ, I am in anguish and I call out to the Father to take it away. Don’t ask this of me Lord! Don’t take the life of my child! Like Christ, I bend my knee and I submit. Like Christ I say, Father, your will be done. And I know, that like Christ, now matter what comes, this God will redeem. He will lift up! He will overcome death with life! For the joy “set before,” me I ask God to help me endure. I pray for joy now, but ultimately my anchor is hooked into the joy set before me, joy in the temple of the Lord – in the very Holy of Holies. This is my hope.
Today Allistaire’s ANC is 1189. Her platelets are 99 and her hematocrit is 34.5. There are zero blasts.
Love you girl. Love your heart. Wish I could hang on your neck today. Hang on Jesus’ neck. He’s right there. Miss you already.
Hi Jai. So much… I love you and I rest in knowing God loves you as high as the heavens are above the earth… Grace, grace, grace to you guys today…
As always, thanks so much for sharing. Thank-you for writing and reminding me of the perspective we are to have everyday. What hope we can have in Christ! Praying for you and your sweet little one. Praying for the test on Tuesday…
no words…just love, love, love and more love…and prayers. Tammy and Kelly
Prayers & hugs for your rollercoaster ride into the unknown! Allistaire looks so innocent and perfect in every way. She has such an impish look to her – she looks “bright-eyed and bushy tailed” and ready to take on the world! It’s hard to believe that there still may be a stray cell that can change everything in the blink of an eye! I pray that her body will have the defenses to wipe away any threat! Please know I care and pray so much for little Allistaire, Solveig, your husband and you. Hugs from a Montana grandma!
I too, have SO MUCH HOPE for Allistaire. She is positively glowing in all of these pictures.
From one cancer momma to another…We dealt with acute gut GVHD and we too relied on whole milk for calories. Switching to lactose free helped tremendously with tummy upset and diarrhea. Might be worth a shot. 🙂
Love and prayers.
Hi there – I know who you are from Master’s – but not sure if we ever spoke. Mutual friends shared this blog on FB – and I have been following for the last few months, having read your journey from the very first post until now. I have a son Allistaire’s age, and I just read this and just ache with you and your family, and pray . . . and hope. You have so many people out here praying for your precious daughter and family, and you all are so loved by so many people, even people you don’t know 🙂 Thank you for giving us the privilege to love and pray for you all.
I didn’t realize I had signed in from a very old account my husband started. This is Crystal (Barber) Lazenby (just so the message wasn’t so cryptic 🙂
Love you, Jai. Praying for you, Allistaire, Sten and Solveig.
i havent written cuz we lost our dad june 13th. Im devestated in sorrow for the disappearance of someone i loved for 60 yrs a long time. But, i have not stopped ck in semi daily checking up on you all. I pray daily. Keep on staying so God given strong girl youll make it. Your such an insperation of truest truth. God be praised. Please pray for my family that is in great joy, and sorrow. Love in Jesus sister…. Joette. Hi to mom 4 me. (( Thanks kat for card miss you much.))
More cautious hope. It makes me happy to see her living so vibrantly now. That first photo with “Ron Don” is awesome. My family’s thoughts and prayers are with your family. As always, your words encourage us in our faith and we are thankful to God for that.
I found your blog some months ago through mutual friends. I have cried along with you and your family since. I am begging our gracious Lord to continue giving you grace to see Him in all your days and to continue rearranging your hope to Him alone; you are so much closer than the rest of us. I am so very sorry for your pain and your little one. Some day this all will make sense and we will somehow understand what is meant by “momentary, light affliction” – until then, I am trusting Him to continue supplying all that is needed from His gracious storehouse in glory. Much love in Him, Nellie King
Love and Hugs from Kathy
And I am praying that there is no cancer detectable..
Praying fervently for zero percent, anxiously awaiting news, as I know you are. Love you, Jai!