Ours is a sanitized fight. I have only ever seen two insects on the Unit. One would never know there was weather outside were it not for the horizontal planes of glass affixed to the side of the new building to contrast the vertical slices of blue, orange and green glass. The rain hits the horizontal slabs, reminding the inside dweller that life does indeed exist out of these confines. How I treasure those horizontal planes. Ours is a tedious, slow fight of absurd wealth. The amount of financial, material, technological and human resources brought to fight for Allistaire’s life is staggering. The light is bright with cheery images on the walls and flashes of exuberant color. Countless groups come to the hospital and to Ron Don to make the season joyous. Gifts flow in and in and in. Everywhere smiling faces, time given to compassionate conversations and cheering us on and rooting for Allistaire. Everywhere love and support. Ours is a fight with so many allies.
In anticipation of the movie, “Unbroken,” coming out, I am determined to read the book first. Much to my chagrin, I have not read much of history and this account of World War II in the Pacific gives me a much enhanced admiration and appreciation for our veterans. How they faced the horrors common to war is awe-inspiring. Their fight was poorly financed, poorly equipped and fraught with terrors I cannot begin to grasp – exploding flesh from countless weapons, disease, lack of medical care, sharks, exposure, starvation, torture. In the same way that we press forward, unwilling to loosen our grip on life, they endured, they strove to hold onto life. When Allistaire was first diagnosed, I kept thinking, if I was a Haitian mother, I would simply have a dead child. There would be no fight. There would simply be a swift succumbing to wretched disease. So it has been throughout history and so it is in countless stories across this earth at this very moment – fights for life – lives cherished and infinitely valuable.
I went to bed Thursday night with the thought that we have been given SO much. It is privilege to even have the opportunity to fight alongside Allistaire for her life. Few have been given so much with which to battle, to persevere. Who are we to have been so blessed? The thought of what people must endure on this earth is utterly heartbreaking. This fight tears constantly at my heart and yet, it is gift. It could be so very different. I went to bed more at rest in my spirit. I woke less and still woke with heightened anticipation, but not terror. I know the Lord is good and He sees the whole expanse while my sight is limited to a ridiculous degree. Who am I to say what is best and thus what tomorrow should bring? I keep handing her over to Him, entrusting her to Him, entrusting my heart and my life to Him. Do as you please Lord. You are my whole heart and it swells with longing for you Lord. I live a dual anticipation – what will come to pass with Allistaire and looking for what the Lord will do. The question of “why,” has never dominated my thoughts. The earth and all that is in it is broken and it longs with eager anticipation for the coming of Christ to fulfill all His promises and restore and redeem. The question of why rests far more on, “Oh Lord, why have you brought this wild, wringing sorrow into my life? You are not an arbitrary God. You are a sovereign, beautiful God, so what is your good intention for this road you are having me walk? Why us, why now, why here? Who will you put in our path? How can I walk these halls and these days with face radiant because I HAVE seen you?!” I don’t believe in accident. I ask, “why,” because I am on the lookout for the beauty of what the Lord will raise up out of these days.
I actually experienced rest Thursday night and woke Friday once again in prayer, once again asking the Lord to orient my heart to Him – that He would fill my vision. He has provided so abundantly, will I curse Him now if things do not go as I desire? He is not a fickle God. Is He not still the same good God when blasts appear on the lab sheet, when Flow Cytometry reveals an ugly diseased marrow? I rose from my surprisingly comfortable couch bed to go and find our nurse, Nate, to discover what the Lord gave this day. Allistaire’s ANC was 230 and there were zero blasts. This meant a green light for her bone marrow test and ecstatic joy. My joy was compounded when the doctor who did Allistaire’s bone marrow brought out a bright red, juicy sample of bone marrow to show me and tell me how good things felt in there, how simply good the sample looked. On Friday they did a bi-lateral biopsy and aspirate, meaning they took sample from both hips in order to ensure sufficient sample given how hard it was to achieve last time due to the fibrosis. Friday’s sample showed a changed marrow. So, no blasts, rising ANC, platelets and hematocrit, a juicy fabulous sample of her marrow, lots of energy and no pain – as Dr. Gardner said, we have “guarded optimism.”
After I put Allistaire down Friday for her nap, I went to Ron Don and laid down, intending to read, “Unbroken.” With lights of the room blazing around me I allowed myself to succumb to sleep. Three naps in one week – what in the world? A year could go by and I would not have typically had a nap. Naps don’t work for me. But an incredible exhaustion settled me flat on the bed and I dozed. Perhaps I should be packing clothes for the next few days, but who could know which way the next few days would twist and turn. I met with Dr. Gardner on Thursday afternoon to discuss three things: what was necessary to move forward with transplant, Denver and discharge.
As Allistaire’s ANC rose over the past week, the team started talking about discharge. One might think that I should be excited about getting booted from the hospital but in fact “out there,” is a terrifying world I’m not excited to take Allistaire into – especially not now. The docs pointed out that she has an ANC now which means she has a few lymphocytes (white blood cells) to fight illness. Yeah, but perfectly healthy people with astronomical ANCs are getting taken down left and right with the flu and various other horrid colds and such, not to mention the Hand, food and mouth disease and Whooping cough going around Montana that could carry itself in the backs of our family. Now more than ever, it is utterly essential to protect Allistaire from getting sick. If the chemo has miraculously succeeded in getting her disease knocked down enough to move forward with transplant, then a very precise timing begins where two very separate lives must intersect at exactly the right moment. The “conditioning,” (chemo and radiation), for transplant is timed in alignment with the donor prepping for the removal of their stem cells. Cells are living organisms and can only survive so long outside the body and as conditioning begins for Allistaire, the process of permanently destroying her bone marrow has begun. So, it is imperative that nothing stands in Allistaire’s way of walking each carefully planned step forward to transplant if we are given that option. Something like RSV (a respiratory virus) is actually fatal in transplant. She won’t have time to “get over being sick.” The thought of leaving the hospital means she and I will be trapped alone in our room at Ron Don. She can’t be in the communal areas and in order to get food I would have to take her with me to the grocery store which is a hot-house of hacking, sick people and kids. Our best option is to go very early in the morning or late at night when we have a chance at steering clear of the sickos.
Then there was the issue of Denver. So the bummer news is that the initial findings of the study, in the adult patients anyways, is not too impressive. Only about 25% had a good response. As Dr. Tarlock later told me, these aren’t such poor statistics for a single agent and likely this drug will be combined with other therapies in the future to have a far greater effect. The truth is too, that this trial is Phase One, meaning they are only testing for safety, not efficacy. The point being, it doesn’t seem worth it to send Allistaire to another state, another hospital, another group of doctors for a drug that isn’t a likely hit for her – unless there are no other options of course. Dr. Gardner was going to see if she could contact the principal investigator and get a sense of how the pediatric patients were responding, as it could be quite different from in the adults.
By the way, here is yet another plug for pediatric cancer research – did you know that the NCI (National Cancer Institute) only gives 3-4% of its annual budget to funding pediatric cancer research specifically? Here’s the problem, far fewer children get cancer than adults so it is not in the pharmaceutical companies financial interest to fund research to treat pediatric cancer. So really, kids only get what eventually might trickle down to them from cancer research in adults which means much more time passes before there are any breakthroughs for kids with cancer. Additionally, there are a number of cancers that only children get, like neuroblastoma. Even AML, which is the most common form of adult leukemia, most likely has different origins and characteristics for children than in adults. When a child is treated for cancer, their body is rapidly growing and every organ from the heart to the liver and brain are being poisoned from the chemotherapy and radiation. Chemo targets the fast growing cancer cells. In kids, all the cells are growing far more rapidly than in adults which means their healthy cells are much more vulnerable to the onslaught of chemo and radiation. When an adult is cured from cancer, their life has been extended by and average of 15 years. When a child is cured from cancer, their life has been extended by an average of 71 years. So if the NCI won’t fund pediatric cancer research and the pharmaceutical companies have no incentive to do so, it means the real hope for children with cancer rests with the private donor. Allistaire has benefited directly and significantly from research at Fred Hutch which treats adults as well and I will continue to root for them and seek to raise money for what they are doing, but there is also a place for giving directly to childhood cancer research.
Okay, back to the most significant issue at hand – what reality will enable Allistaire to move forward with transplant? What must be true from the results of the bone marrow aspirate and PET/CT? Dr. Gardner said the most important piece is that the disease in her marrow must be quite low. The less there is in her marrow, the more likely the transplant is to succeed. So while the transplant allows the patient to not be in remission, it is still far better that they are. She said that if the pathologist looks at Allistaire’s sample under the microscope and she is morphological remission which is defined as 5% or less disease (this is the lowest detectable amount with the microscope), then she will be in good shape to move forward with transplant. Of course there is also the issue of her chloromas (locations of solid leukemia). One would presume that if the chemo worked in her marrow, it would do the same in the chloromas but apparently tumors have their own micro environments that can allow and promote cancer cell growth that doesn’t take place outside of them. Only the PET/CT will tell the truth about what’s going on inside, but so far she has not had any pain which is a good sign. Neither Dr. Gardner nor Dr. Bleakley are super concerned with the chloromas simply because they can be treated with focal radiation if necessary. Of course this is not optimal as every part of the body that is exposed to radiation is more prone to develop cancer in the future and can be damaged or deformed. I am sure that an increase in the number or size of the chloromas would require quite a discussion, even if her marrow was in good shape.
I left my time with Dr. Gardner with the plan that she would see what she could find out from Denver, and that if her marrow looked good, we would be discharged from the hospital and if not, we would stay in. So what’s the point of packing I thought. I lay in a flattened, utterly still state. The phone rang with that attention grabbing number ever emblazoned into my brain: (206) 987-2000. My heart jumps every single time that number shows up on my phone. Even when all has been well that number gets my heart thumping and dampness of the palm. It was Dr. Shoeback, the attending doctor at Children’s. “The pathologist can see no cancer cells in Allistaire’s sample.” WHAT? Utter ELATION!!!!!!!! I could not believe my ears! Allistaire is in morphological remission and only the possibility of a horrible PET/CT stands in her way of moving forward with transplant. After the exhausting torture of her last relapse, I could not have imaged this being possible. But it worked!!!!!! On Monday we should have results back from Flow Cytometry, but that will only give us a number below 5% and while it would be awesome if it was zero, it doesn’t need to be any less than 5% to be given the open door to transplant.
On Monday at 1:15pm, Allistaire will have her PET/CT scan and by the end of the day, I should hear from Dr. Gardner with the results. Of course a plan can’t really be formulated until all the data is in, but the AML docs and Dr. Gardner are discussing with Dr. Bleakley what would be the best plan for “bridge chemo.” It is necessary to have some form of treatment between the end of this round of chemo and conditioning chemo because you ethically can’t get the donor moving forward with their steps until you know you really can have a transplant. By the way, while Allistaire has no U.S. donor, Dr. Bleakley is trying her best to exhaust all possible options for Allistaire. She is in contact with the German version of the FDA to get approval on their end to get a consent process with the overseas donor to manipulate the T-cells. I think the idea is that this is an additional step taken with the donor’s cells and because the donor’s cells are technically part of the donor or owned by the donor, they have to give consent. If you want a super interesting read on this topic, check out, “The Immortal Life of Henrietta Lacks.” If approval is given through the German system, Dr. Bleakley can then seek out approval from the FDA. Even if all this approval goes through, there is still the issue of the timing and age of the cells given the additional time that would be required to process the cells in Seattle. If the donor is from a “major center,” in the German system, this increases the likelihood that the quality and timing of the cells could work. Dr. Bleakley says that ultimately it will be up for Sten and I to decide what we want to do. It’s a gamble really. The conditioning chemo for the trial transplant and the standard transplant are different. The donor cells could arrive from overseas and it be determined that they are not in good enough condition to be processed and take out the naive T-cells. In this case only the minimal processing that always occurs with donor cells would take place and Allistaire would get the transfusion of donor cells as is. There is a lot to consider, if even we end up having that choice to make. In the mean time, Allistaire will need some chemo to keep the bad guys down. This could either be another round of the DMEC (Decitabine, Mitoxantrone, Etoposide, Cytarabine) which she just had – in the clinical trial it has been given in one to three courses. Because her heart remains in good shape, this would be an option. Additionally, Decitabine can become even more effective over multiple courses in the same way that Azacitadine does, which she had post-transplant last time. Another option would be Decitabine alone. Lots of brainstorming amongst the docs is necessary.
I can hardly believe it. I can hardly take it in. I cannot stop smiling!!!!! My girl has been given one more open door. Every day of this journey feels like walking around a blind corner. There is absolutely no way to predict what the next day will bring. Often the entire trajectory of your world can shift from morning to night. The wind blows, the seas rage and toss and yet the north star is unmoving. I keep my eyes fixed on Christ, my one sure hold. Tomorrow morning we rise to a new day. I have no idea what will be known when I lay down to sleep Monday night. What if this whole thing, this crazy journey is just so that I would meet Debbie today in the rug aisle in Target? What if all these years of highs and dark lows are so that I could tell her, Debbie, my hope is in God! My hope is in God! Not that He will save Allistaire, though I have joyous confidence that He can overcome the most hideous of cancer cells, but that this whole crazy life and world are His and He will accomplish the beauty of His will which is more magnificent and glorious than we could ever, ever imagine. His promises are sure footings. Debbie, your hope can be in God, in Christ the Savior who was born to bring peace and goodwill to all men! Oh let the whole earth, the whole wondrous earth sing His praises, may every cell of my flesh rise up and strain to declare His love, His beauty, His overcoming power to redeem and raise the dead, the dead heart, the dead flesh. He is coming, He is coming and I am on the lookout!
(The top picture is of the vial of her bone marrow aspirate and the the tiny bit of bone is the biopsy. I’ve included at the end a number of pics from three years ago – always wild to see some perspective on our journey)
Jai, I pray for you more than I have the time to comment on your posts. I could not be more excited to read this post and am praising God with you that He has chosen to give you this open door. It is so crazy true that we deserve none of the abundance we receive daily but His loving kindness never fails and keeps me fainting for His coming. Love you girl. I’ll keep praying with you.
What good news! I shared the Be the Match info on my Facebook and am going to check right now to make sure all my information is updated. Much love to you, Jai!
JOY JOY JOY!!!
So glad to hear this good news and to see you smiling so much Merry Christmas. Date: Mon, 22 Dec 2014 02:05:14 +0000 To: firstname.lastname@example.org
Indeed, the Lord God Almighty is One of lavish love and abundant beauty! Peter Ellis said it so well when he wrote,
“Lavish love, abundant beauty, Gracious gifts for heart and hand,
Life that fills the soul and senses- All burst forth at Your command.
Lord, our Lord, Eternal Father, Great Creator, God and Friend,
Boundless pow’r gave full expression To Your love which knows no end.
Who am I that You should love me, Meet my ev’ry need from birth?
Why invest Yourself so fully In a creature made of earth?
In Your loving heart You planned me, Fashioned me with greatest care;
Tthrough my soul You breathed Your Spirit, Planted Your own image there.
I am Yours, Eternal Father, All my body, mind and heart.
Take and use me to Your glory, Form Yourself in ev’ry part.
Lord, Your love brings joy and gladness Flowing forth within the soul.
May my very breath and being Rise to You, their source and goal.”
How lavishly He has loved us and abundantly provided! May we each look daily for His gracious gifts!
Celebrating with you and continuing to pray!! “Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you and trust my life.” Psalm 143:8
Celebrating with you and continuing to pray!! “Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I entrust my life.” Psalm 143:8
Jai, I’m so happy to hear the news!!!
I don’t know if you’ve mentioned this or not. Why can’t they fly the donor here from Germany and do the biopsy/manipulation here in Seattle?
This is a small thing, and it may not even be relevant in the next few weeks, but I live about a mile from Ron Don and would be delighted to be able to run errands/grocery shop for you. We’ve followed and prayed over you and Allistaire and Sten and Solveig for well over a year now. Please email me if I can help.
Been following your blog and story…wow. thank you for sharing! What encouragement for these doors to open!! Praying they continue to do so with a donor, successful transplant and forever remission! I have looked into volunteering at a Ronald McDonald house and the one that’s near Dornbecher has a (volunteer) personal shopper! Wonder if yours might too? Wish I was closer and could volunteer for you! You probably already looked into it but thought it might be worth mentioning as you guard your girl from all those sickos this time of year 😦 if not, Safeway delivery?? Good luck! Prayers for you and your family as you continue to navigate the road ahead.