My friend and fellow cancer kicking mom, Pam, told me yesterday about a family who were told their five-year old daughter, Madeline, had an untreatable brain tumor. As they left the hospital with nothing but an unknown amount of time left, the doctor told them to remember that they had forever to mourn, but a limited time to fully enjoy their daughter. She died five days later. Everyone’s journey is and will be different, but something about this story pushed me just enough to the side of the rut of sorrow from the past few days that I was able to grasp onto some tangible goal to set my mind to. I still didn’t have any clue if or how I could spend, “quality time,” with us as a family knowing what’s before us. But today Sten and Solveig arrived. At first Allistaire was quite grumpy and still in a fair amount of pain from her bone marrow biopsy which has required a fair number of doses of pain meds. But it wasn’t so long before the two girlies were enjoying one another. As I stood back and watched them interact, I delighted to see a form of medicine not available anywhere in this hospital. I watched glee on Allistaire’s face as she and Solveig were just utterly silly together, silly in a way I have no capacity. I guess it takes a 3-year-old mind to think what the 6-year-old is doing is hilarious. We actually had a fairly lovely morning together and I didn’t think non-stop about cancer or fixate on these perhaps being the last times together laughing. I was somehow able to simply enjoy. I really hadn’t thought this was possible, but this morning gave me a glimpse that it is indeed possible.
When I awoke this morning I did not feel as deeply wounded by my swamping sadness. I have always known to put my mind and efforts toward something in hopes of producing something worthwhile. It came to my mind that this is what I have before me. Me, the task oriented person, was blessed this morning to realize that this is a work before me. No, I can do very little to impact whatever the outcome will be, but I do very much have choice and ability to impact what these days look like, no matter how short or long. I have forever to grieve if it comes to that. What I do have is right now. I have the opportunity to help my daughter fight this fight and win and to fight this fight to possibly die with as much beauty and dignity and joy and peace as possible. When I saw Solveig’s beautiful, cheery little face this morning, her eyes bright and hair swinging, I was reminded, this child is alive, this child needs me. I do not disregard the possibilities. For my sake, for Allistaire’s sake, for Solveig’s sake, I must face them. But, I cannot turn so far inward into my grief that I miss the very present lives right in front of me. Okay. Game on. Let’s do this. This is what is before us. I don’t know how to do this. I have no clue. And no, I am not strong. I am not wise. I am broken and weary and frail but that is not all that I am and there are lives – not only one life, but lives worth fighting for. I am their mom and I ask my Father in heaven to guide me to care for them through all the hours and days of this.
So here’s the plan. First we gather all the data to know exactly what state Allistaire’s body is in. Overall she is in good condition – her kidneys are working great, her liver is fine and exactly what they would expect. Her RSV is virtually non-existent and her rhino virus continues to go down. She has no symptoms. She had an EKG and echocardiogram today that in a quick pass looked alright despite some diminished function, but we will be getting a cardiology consult to see if there is anything we can do that can give her heart added protection for what is to come. A blood draw tomorrow will help take a look at her pancreatic function and a CT scan will look for fungus in the lungs, respiratory infection and the status of the two spots of bulk disease – her lymph node and back. There is no indication that there is an issue with any of these but we need to check to see where things stand.
The goal is to give Allistaire a round of chemo with no expectation that she will be in remission so that she can participate in a clinical study which is specifically for kids who are not in remission. If the chemo were to miraculously put her into remission, we could move forward with the original transplant plan which used cord blood. But because remission seems highly unlikely, we are setting our eyes on this clinical study which uses an old, old chemo in place of total body irradiation and a chemo that has been used a fair amount but not in kids who are not in remission. It has been used with some promising success in adults not in remission but I believe Allistaire will likely be the very first child. The clinical study requires there to be no active infections (just like the last one so we need to keep that RSV at bay), clean spinal fluid, over 5% blasts in the marrow and no more than 10,000 blasts in the peripheral blood. The first part of the spinal fluid test have come back clean and they are not anticipating the final portion of the test to show anything different. Today’s blasts amounted to 3,000 and most frighteningly, the flow cytometry test actually showed 80% blasts in her marrow. Now there really are very few cells in her marrow, but of those present, 80% are leukemic. Even though this does not effect her eligibility or presumably her prognosis in transplant, it is still a startling number. Ultimately the idea is that Allistaire’s leukemia will never be cured by chemo but we rely on the hope that GVL – Graft Versus Leukemia, where a new immune system will actually identify and destroy the cancer, will be her cure. Dr. Pollard noted that she believes immunology is what will eventually be the crack into curing cancer. So beautiful huh? An immune system, so beautifully designed to protect, will be able to be used to kill cancer! May it be!
So the really big change in the road ahead is that the transplant clinical study requires a 10 out of 10 matched bone marrow donor. Yep, here we are again, two months later. This is what we need – a perfectly matched donor. The chemo is really only taking place to give us enough time to identify potential donors, complete testing to identify the one best donor and make arrangements for the actual “procurement,” of the cells. The bone marrow search folks are not allowed to communicate the urgency to the possible donor because it could be viewed as coercion but we will really, really need this to happen fast and in the right time. We need good healthy marrow – which by the way comes from young adult males – so listen up boys – it’s too late for you to help Allistaire specifically, because the search has already begun, but there is someone else whose life depends on your sacrifice! So go to Be The Match.org and register today! And I don’t want to hear any of this nonsense of not liking needles. Get over it. Wouldn’t you want someone else to do the same for you, or for your sister?
Yes, we briefly talked about what it would look like if we did need to take Allistaire home and what our options would be. We skimmed this because we are not on that path at this point. It is still hard to imagine how death actually comes, but I am choosing to direct my eyes to the lives in front of me. If and when we get closer to that, we will have a lot more to discuss. For now we will continue all the ways that Allistaire’s life needs to be supported and protected to give her the best shot at what the steps before us.
Lastly, we are choosing to wait several days to begin chemo in order to prioritize time with our immediate family of four, Sten’s family who is all coming out from Bozeman this weekend, and hopefully my family as well, in the coming week. We are looking forward to making the most of the great weather that will enable us be outside and have fun without being around a lot of people. We are thinking about starting chemo Sunday evening.
I don’t think I’ve actually cried today which is truly remarkable now that I think about it. No parent wants to help their child die well. To even say such a thing seems like a mystery. As parents, Sten and I are entrusted with helping our children through whatever stage they must pass through. I hope of course that this is simply a very dark valley that we will look back on, thankful for how it has formed us, but with all four of us together. I don’t know what the future holds. You can say those simple words but then they come into clearer and clearer focus. You live the reality of insecurity, lack of control, finiteness, the illusions fade or are stripped away. But I suppose that is part of the good that is a by-product of all this, at last what is true is more defined and visible. Tonight I go to bed still very fatigued but a bit more light-hearted.
Thank you Father in heaven for hearing the overwhelming number of heart-felt prayers on our behalf! And thank you Ginni for the gorgeous bracelets/cuffs you made for Allistaire and I – I love them! You are too sweet! And a special thanks and joy for all the amazing women folk who have rallied around me and our family, near and far, you are a force to be reckoned with and it really does make me giddy when I think of the beauty of the body of Christ!
Conglomeration of Joy 
Jai, I read your previous post earlier today and cried my eyes out for you. I so wish there was something I could do that would tangibly help your situation. But I am continuing to stand with you in prayer and see how God is giving you grace for each moment. I was so thankful to read this post tonight, to hear to your plan, to see your beautiful family all together… I’ll be praying for sweet and beautiful times together this week. Much love,
Alison
You as a family are in my thoughts and prays so much today, Oh how I have cried for you and I really feel God prompting me to say break bread together, there is healing in his blood. Love in Christ. Debbie from Durban South Africa
Loving these pictures, praying like crazy, crying my eyes out, wishing I could give you a big hug… because I can’t imagine where you’re at, yet I have to because its inevitable for me in a totally different but similar and completely unknown way. Ugh. No words.
I just read another blog about a woman in my church and my first thought was, Jai needs this. So if you get a moment, this: http://www.christinaahmann.com
She just wrote Update Eighty yesterday, I hope it gives you the courage that you’ve given to so many through your writing.
Thank you for this update. You are a beautiful family in so many ways. I am relieved to hear that this plan, no matter remission, includes a transplant. I believe that GVL effect is the reason Olivia is here today. This effect that they used to try to prevent all together.
I am praying for remission and for the perfect match to be found (and swiftly) should that be the path you take. Praying too, for continued lightness in the moment, and joy in your days.
Love you all.
Love the pictures – beautiful family! Praying & thinking of you lots! Hope you get to enjoy some spring days. I like the sound of this plan & praying hard for the match!!
Dear precious family…
I want to share with you a song and a prayer…
Zeph 3:17
The Lord your God in your midst,
The Mighty One, will save;
He will rejoice over you with gladness,
He will quiet you with His love,
He will rejoice over you with singing.
Dear Precious Heavenly Father…I ask you to bring Your sweet voice in song that flows from the throne room of heaven into the hearts of Allistaire and her family as they settle in peaceful rest of Your perfect glory poured over their family. I ask You to wrap Your arms around them tonight and every day and every night, holding their tears, bringing them peace and joy, and providing for them all they need as they go through this time of healing, hope and new life with the journey that lies ahead of them. I thank you God that You are the giver of all gifts and it is Your desire for joy to be bestowed upon Your children, and for all of Your children to know the love that surrounds them with the healing balm of Gilead in their hearts and in their lives. I pray You continue to place Your angels of life around Allistaire so that all who come into contact with her will know the greatness of Our God. I pray You give the Doctors and care takers in her midst the exact medical care needed to give to sweet Allistaire and make this treatment be a testimony of Your perfectness. I praise You for the strength You continue to give to Jai in her time of need as she has affected the lives of so many during her time of brokenness through her writing and sharing of faith with others. Your love, Your life, Your Way is perfect and How great is the love of the Father. In Jesus name I pray, Amen.
God Bless you sweet sister,
Terry
Hi Jai;
As I read the updates my heart is saddened and has Joy at the same time, sad for all this you all have to go through and joy in the peace and courage and joy I see in your posts. I am Praying for you all each and every day. I miss you much, love you lots and think of you often. I wish there was something I could say, but no words come to mind… Please give the girls a hug from me.
With Love…….. Klynn. (Kathy)
Kathy – beloved sister – don’t forget that it was through you that I learned two really, really significant truths of the life of a Christian – sanctification is not a straight line, it twists and turns and sometimes retreats before it launches forward and even the ugliest horrors can be beautifully redeemed! Love you lots!
Hey Jai,
Don’t know if you remember me from Masters, but I heard of your story trough Kathy. I’m praying hard for you guys right now. Your words are touching and so close to my heart as I have a 3 year old girl. Just wanted you to know there are people all over this world lifting you up in prayer and your praying for healing for your sweet baby.
Rachel
Jai, where does one go to try and encourage you when your heart is so broken. But when we know the one who heals our broken hearts He is the only one to turn to. I just wanted to share with you my devotion for today, and pray it blesses your heart. ” when something in your life or thoughts make you anxious, come to Me and let’s talk about it.bring me your prayer and petition with thanksgiving. Thank you Jesus for this opportunity to trust you more.” Though the lessons of trust that I send to you may come wrapped in difficulties, the benefits far outweigh the cost.
Well developed. Trust will bring many blessings, not the least of which is my peace. I have promised to keep you in perfect peace, to the extent that you trust me more. My peace, however, is such an all encompassing gift that it is independent of all circumstances. Though you lose everything else, if you gain my peace you are rich indeed. Phil 4:6. Isaiah 26:3
Praying for your beautiful family. May your weekend together bring joy to your heart. You are precious in His sight.
So thankful for the time y’all have together as a family. Our community group cried out to Jesus on y’all’s behalf last night.
I marvel at the beauty of your family, Jai. Whenever you are together, I see your perspective shift (in your blog). You bolster each other, you bring each other into the light, you anchor and shelter each other. I hope that you are reveling in each other with fervent joy and that the healing in that act is a powerful balm to your heart and soul. Sending you the love and prayers of friends and strangers alike. May we hear good news soon.
Precious pictures of these little ones who are so-o-o wrapped around our hearts! Today the Lord comforts me with these words from Isaiah 40:11, “He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.” He will carry you-He will carry me-though our hearts break and we feel like we may fall and be dashed to pieces, He assures us that He will carry us! His strong, all-powerful arms will carry us! And “he gently leads those that have young”. He will gently lead you through this uncharted, unfamiliar to us, road ahead. We have God’s Word on that-that I cling to.
Dear Precious Family, I just want you to know that our family is sending up all of our very deepest prayers for Allistaire…. and you. Emily let me know this morning; she is highly concerned, as we all are. I know we have never met in person, but somehow I feel we DO know you, and you have deeply touched all of our hearts. Your writing is profound; truly, God is near you and with you. I have alerted three churches in Portland and their prayer hot-lines this morning, and everyone here is praying for dearest Allistaire. Thank you for your bravery, your heart for God, your trust in Him. I hope you can feel the large upswelling of a continual stream of prayers coming to all of you from Oregon!! With much love, the Houle family
You are brilliant, amazing and remarkable.
Oh yeah…loved. Praying
Jai,
I was absolutely heartsick to learn yesterday that Allistaire was back in the hospital. Even with my brief interactions with her in the hospital, she is the patient whom I think of, love, and pray for the most. Your writings make me weep with the deepest grief that cries out for the day when there will be no more suffering, pain, and (most of all) cancer. I rest in the fact that Jesus, the God of this world, profoundly knows and understands that suffering. I am praying for beautiful Allistaire and your family. If it would be alright, I would love to stop by and say hello, though I don’t want to interrupt your family time…
Much love,
Emily
Oh Emily – it would be joy upon joy to have you stop by! You are so dear to me as you were there at the very beginning with us and the Spirit of our Lord is so beautifully evident in you! Sometime next week would be great either 9-1pm or after 6 are usually the best open windows. Looking forward to seeing you!
Finally back at the SCH hospital starting tomorrow (have been away for 4 months). Just so you’re not surprised, I’ll either try and come tomorrow around 3ish or Friday after 6 pm. Otherwise, I’ll be in the PICU for the whole next month and can come by in the evening any night of the week.
Praying for you! Shared your story with my small group–we’ve all been praying like crazy. Much love to you all.
Looking so forward to seeing you – if it’s between 2-6 pm Allistaire is usually napping but the nurse can give you my cell number and I am usually 5-10 min away
Keeping you all in our hearts.
Dawna Lynn Wells
Billings, MT
cousin of Caden
Love and prayers. Love and prayers.
Dear Jai, Sten, and Family,
When my Mom was told she had terminal cancer, I was her companion. She found the Doctor’s words, “You have non-treatable terminal metastasized cancer” a bitter pill and hard to swallow. But as time passed, she found her Lord calling her to “live”. To “live” in her dying. As her companion, I realized, I too was dying, I just didn’t wasn’t given the time as my Mom was. Was I living in my “dying”? With my Mom’s witness, I learned to say “Yes” as she did. We don’t always know when, or how, and sometimes we do know. But we can all say “Yes”. As her companion, I could say “Yes” as she said “Yes”, so she had someone to journey with her and support her. That is what I see in you as a family. You have said “Yes” to the Lord. continue to Trust In Him!
I am a friend of Addie Bedford’s and have been praying for you since she shared a link to your blog. I just wanted to tell you that I am praying… words fail me, and so I just add my “amen” over and over to your own prayers.
I saw your blog for the first time two days ago when Addie posted it on her page. I broke down sobbing in agony of spirit for all you are enduring. When my husband came home he read and also was so heavily burdened. We prayed on our faces fervently over Allistaire and your sweet family. As we went to bed your beautiful daughters name was loudly echoing in my mind and also the thought fast. Fast. Fast and pray. But simultaneously the thoughts…I have never fasted and I can’t right now because I’m nursing. Just then, my husband said that he felt very strongly we should fast and pray for your family. There was such confirmation in the Spirit that He laid the same burden on each of our hearts independently that I know it’s what He desires. We also have two other people who deeply love The Lord who are joining us today. Coming BOLDLY to the Throne of Grace on behalf of sweet Allistaire, and for me as a mother of two girls, one a three year old, seeking unexplainable comfort and peace for you! We will pray as the Spirit leads and trust He has perfect, Divine purpose in His leadings! Many blessings to you!! Thank you for baring your soul with such beauty and grace. The hand of Almighty God is evidenced through out your words and your witness to Him will produce much fruit and a mighty harvest!
I saw your blog for the first time two days ago when Addie posted it on her page. I broke down sobbing in agony of spirit for all you are enduring. When my husband came home he read and also was so heavily burdened. We prayed on our faces fervently over Allistaire and your sweet family. As we went to bed your beautiful daughters name was loudly echoing in my mind and also the thought fast. Fast. Fast and pray. But simultaneously the thoughts…I have never fasted and I can’t right now because I’m nursing. Just then, my husband said that he felt very strongly we should fast and pray for your family. There was such confirmation in the Spirit that He laid the same burden on each of our hearts independently that I know it’s what He desires. We also have two other people who deeply love The Lord who are joining us today. Coming BOLDLY to the Throne of Grace on behalf of sweet Allistaire, and for me as a mother of two girls, one a three year old, seeking unexplainable comfort and peace for you! We will pray as the Spirit leads and trust He has perfect, Divine purpose in His leadings! Many blessings to you!! Thank you for baring your soul with such beauty and grace. The hand of Almighty God is evidenced through out your words and your witness to Him will produce much fruit and a mighty harvest!
Dearest jai, sten, fam.
Ive been down with my own cancer treatments this last 2weeks to post but ive checked ur blog everyday to stay up on treatment and status of our baby girl. I cry with u both i cannot imagine no one else can. I can only feel the pain and hurt too. The BRIDE OF CHRIST IS ALIVE AND PRAYING WELL, THANK YOU ABBA… EL ELYON. I HAVENT heard no fat ladies singing either.. So, what we see day to day doesnt make it so… Because according to the meaning of faith… Its the hope and ASSURANCE OF WHAT CAN’T BE SEEN THAT COUNTS IS IT NOT SO? THEN, UNTIL IT IS FINISHED WHAT WE SEE CANe MUCH BE from the dark forces at work and jai u know, we believers know that the prince of darkness(yes u satan) is the father of lies…. So gird up your loins strong faithful mama, and get your corset out of thr drawer haha.. I mean breastplate
, hemet, walkin shoes on, grab your shield an sword… An get in there and c an hear only your God who is in total control. Im saying this to encourage.. More… Nextpg
you, your last blog was so amazing right on. Dont even think if. That if an but isnt in Gods thinking here. Its when she overcomes this an comes home. God gave me this for you to read over and under… Psalms 145 and esp 4 you ves
You all in you trial of agony. God just put on my heart to txt you this and say stand on this scripture and read over and over line by line.
Psalms 145…..esp.jai 4 u and sten and fam. Vss 17–21…Abbas promises. Repeat them in prayer. I pray all day. I am happy to meet my lovey. kathys fam. After 7 yrs knowing her in BSF…. And how she so lovingly speaks of her fam. Now for ayr. We all been praying w/her… I wish not to have got to know what a beautiful, gifted, talented in words such beautiful words u write,, full of The Beautiful HOLY SPIRIT.. woman U R. BUT, U HAVE SO LIFTED ME UP ON DOWN DAYS. God bless you sister and thank you for the time and effort you spend when u must be so very very exhausted. Take care of you, and p. S. Sol. Is as pretty as her mama too. In Our Fathers Most Majestic and HOLY NAME I AM THAT I AM.. AMEN JO. M. OH YA. I SENT BOOK 4 UR MOM TO GET TO U. IT HELPED ME ALOT.
Jai, I love the wonderful pictures, and I’m praying for you and your family every day. Love, Betty
Jai, I have no words. My heart is breaking, and I can’t stop the tears, but I want you to know that we are praying hard for you daily, begging our Lord for a miracle.