I will have to keep this short. Allistaire just fell asleep after yet another time of having a masked forced down on her face while she writhed and screamed and flailed her hands. She HAS to get this Ribavirin. She has to get rid of this virus. Absolutely nothing can move forward without this RSV being over. Her ANC continues at zero.
While I was thankful that Allistaire’s absolute blast level had lowered the last two days, the pathology reports came back confirming that the blasts are leukemic. This means she is absolutely not in remission and on Tuesday she will have a bone marrow biopsy to see how much is in her marrow and a lumbar puncture to see if it’s in her spinal fluid.
Because of the RSV, her transplant was already automatically delayed 3-4 weeks which would necessitate more chemo. Now we are desperate for chemo – any chemo that will work against this beast. The attending doctor on service said that her ability to clear these infections is imperative in order to give her even the opportunity to be on a clinical study, should there be one available to her. Oh, I just found out as well this afternoon, that the fever from early Saturday morning, and the subsequent blood cultures drawn, showed she has a blood infection from the bacteria, Streptococcus. Fortunately, now that she is on two antibiotics, Cefepime and Vancomycin, she shouldn’t have too much trouble getting over this specific bacterial infection.
The one encouragement, is that she actually still seems in relatively good health – relative being the operative word. Her lungs still sound great and I guess that infections of Streptococcus in AML patients can often lead to an ICU visit when it first hits. Allistaire has had almost no symptoms of anything.
Sten and I are in horrified amazement that things have turned so fast, despite being told so many times that this can be the case and despite seeing it happen to others. It is just one of those things that seems impossible but you are watching it happen and participating in it but being outside of it at the same time. Sten is going to fly in on Wednesday hopefully, instead of Thursday evening as planned. It will be so good to have him here. It is hard to be apart and only communicating by phone when a hug is all you want for yourself and are able to give.
On top of all the physical realities for Allistaire, she has been mostly awful to be totally honest. The last couple of days have been so rough. She screams and wails until her face turns read and she pounds her fist and flexes her legs. She absolutely rages. I oscillate between being gentle, to flat to raging myself, to weeping. I so want to care gently and kindly for her but she is so upset so much of the time. It feels like my little sweets is already being taken from me. The Allistaire of a few days ago seems mostly gone. Though, I will say, there was about 5 minutes this evening, when she ate 3 chocolate chip cookies my friend Cambria made, and spun and danced and made silly eyes. It was such a reprieve. Of course it was followed by her utterly smashing the last remains of a cookie and then throwing a psycho fit when I locked her in her eating chair while I cleaned up.
I am spent. There is no end in sight. Harm continues to rise and threaten. I don’t see light right now. But I cling with hope to the promises God has given me – secured by the blood – the very life flow of His own child – His own beloved. I know how much the life of one’s child costs. This is what God sacrificed to secure His promises for me. So I sink into those promises. In my exhaustion and my trembling fear for tomorrow, I hope for what my brother reminded my of tonight – Redemption. I put my hope in that – that this is not all for naught – that God will redeem it. Lord hear our prayer.
Praying for you and crying with you, Jai. Much love.
Love you Jai! Auntie Lucy
Jai, my heart is breaking for you. 😦 Your darling Allistaire is in our prayers- praying for peace and rest for all of you.
I haven’t had the privilege of meeting you, but I’m certain I saw little Allistaire at Grace shortly after your arrival in Bozeman. Thank you for sharing your heart…you’ve been such an example to me of trusting in our great God. My heart hurts for you, and I’ll keep praying.
I am faithfully reading your posts and pray continually for you. I wish I could do something, anything. My heart is aching for you. I will continue to pray.
Something woke me up at 3 am to pray for you and Allistaire. The picture of your face communicates the weary fear, even better than your words. Does each soggy piece of kleneex count as a prayer? I think so. I, and so many others (a host in fact)are praying for you until the dawn!
We have started a novena (special nine day prayer) for Allistaire and your family. – Carolyn (BSF)
Jai, the kids and I continue in prayer for Allistaire, you, and the entire family before school each day. This morning, we almost jumped into school before this prayer occurred, and then the Lord graciously reminded me. Silas even prayed once again, specifically, for Allistaire. Then, I came to my email and read this. I can’t contain my own tears, hearing the physical, emotional weariness in your words, seeing it in your face. I will just repeat in my heart all day… “Lord Jesus, have Mercy…… Lord Jesus, have Mercy”. Anne
We are PRAYING. Praying for miracles and mercy. You are not alone, even in isolation. I wish I had special words to tell you how much you all are being prayed for in this little house. Much much love.
Jai, just wanted to let you know I have been fervently praying for all of you! Often in the wee hours of the morning when I am woken up and the Lord has brought you to my mind. Thank you for your updates, you have a way of making me feel as if I am right there. My heart is aching for you and your family. I am praying the Lord will give you strength and comfort today. As well as complete healing for Allistaire-Tami
Each time I read your heart-felt, gut-splitting blog it makes me weep. But also PRAY! Thank you for your mother heart that bleeds for your child. I pray for you as much as Allistaire. I am reading a book by a godly woman named Muriel Cook. When they were missionaries in Taiwan and the doctors told her that her husband was either going to die or be a complete vegetable from contracting encephalitis B from a mosquito, she clung to this verse.. 11 Samuel 22:29-31 “For you are my lamp, O Lord, and my God lightens my darkness. For by you I can run against a troop, and by my God I can leap over a wall. This God—-His way is PERFECT; the word of the Lord proves true; He is a shield for all those who take refuge in Him.” I pray the word of God can give you comfort and bring you peace as you believe even through this incredible heartache that his way is perfect. Muriel’s husband not only lived, but shocked the doctors when he awoke with no brain damage. They are both in their 80’s now, madly in love, and serving God faithfully.
(I saw Sten last week when I brought him food. So good to see him and give him a hug!)
Oh sweetness, I’m so sorry. Is she on any steroids at all yet? Prednisone and such are so hard as they produce that crabby mood and the swings are horribly hard to take.
Our entire church is praying for Allistaire and for you and your family. We have a lot of prayer warriors in the church, so know that most likely, day or night, someone is holding all of you to the Lord.
I don’t have any words that could possibly bring you comfort. Your face says it all. I’m just so sorry, Jai. You are in my thoughts so often throughout the day and in my prayers, too. We love you.
I’m praying for you, and the whole fam. I’ve been following your Hard journey. May you keep clinging to the God who is Near in the darkness.
Heart sinking…prayers soaring. Tight hugs for you two.
This is a moment where it’s hard to believe that He’ll never give you more than you can bear, but believe we do. Praying fervently for all of you. I wish I could be there to give you a hug – I can only imagine (and often do) how painful this is for you all.
You and your family are on my mind throughout the day. I utter prayers for you all as I’m cooking, cleaning, hugging my own beloveds. My heart aches for you.
Psalm 61: 1-3
Hear my cry, O God,
listen to my prayer;
from the end of the earth I call to you
when my heart is faint.
Lead me to the rock
that is higher than I,
for you have been my refuge,
a strong tower against the enemy.
Keep looking up.
I am so so sorry. Weeping with you and praying for healing, comfort and peace.
Praying for hope and healing. My heart breaks at the news of this setback. You and Allistaire are in my thoughts and prayers so very often. Love to you both
Praying in Whitehall MT