I slow the car heading down the hill on 65th, allowing a mom and her two children to cross the road. Blonde curls bounced and flounced as the little girl, about two, followed her mom casting glances back at me. Without intention my brain delivered up the thought, “maybe that’s what Allistaire would have looked like, alive, out thriving in the world, hair growing toward shoulders.” Immediately I slam the gate close and fix my attention on getting back to the hospital in time for the end of Allistaire’s nap.
It felt as if Monday was a day of dividing, a narrowing once again of the path, splitting the road down into two opposing directions. The morning began with the news that the cardiac anesthesiologist may have to use Milrinone during the sedation which would mean recovery in the ICU and a hoped for wean back off Milrinone. Both words “ICU” and “Milrinone” evoke heavy, deep terror. Ugh. Okay. Okay. Acclimate. Accept. New norm. The bigger issue though was what the results of the Brain MRI, PET/CT and bone marrow test would reveal. Again there was the impending sense of coming down to the end of things. Yet in the midst of this, strange rest to accept what would come.
For three long hours Sten and I sat out on the patio outside of Starbucks, waiting for the pager to alert us that the time had come to take the next step forward on this journey. The cardiac anesthesiologist was pleased with how the sedation had gone and had indeed used a combination of Dopamine and Milrinone to keep Allistaire’s blood pressure from spiraling down. She was recovering in the ICU with the plan to cut the Milrinone dose by half in 6 hours and off completely in another 6. Allistaire herself was still coming out of the effects of anesthesia and was in the angry phase, yelling bitterly “It’s not fair. I hate it here. I want to be in my regular room.” She beat her fists on the bed and slammed Doggie down over and over. Such strange words to hear from her, evidence that Allistaire is growing up, no longer a naive little child but starting to sense a yearning for justice and rightness in the world. It hurt my heart.
As soon as it was clear Allistaire was fine, my attention was powerfully pulled to the fact that it had been hours since the end of the PET/CT and surely by now someone somewhere must know something of what was happening inside Allistaire’s flesh. I asked the ICU nurse to page Dr. Leger, the attending oncologist, asking for results. She’d be right down. My heart began to pound, standing on that ledge overwhelmed by the vast sense of deep space in which I may be about to fall. The news was good. The news was bad. “Her cancer looks better,” she said. Relief but not nearly enough. The PET measures the metabolic activity of the areas of cancer with a unit of measurement called SUV (Standard Uptake Values). The body is deprived of sugar for about 12 hours before the scan and then an injection of glucose is allowed to circulate the body for an hour before the scan is taken. The more metabolically active, the brighter the area of the body on the scan. Results less than 3 and even more so less than 2 are considered to most likely be non-cancerous. All of the chloromas (leukemic tumors) in Allistaire’s body had reduced to less than a value of 2 with the exception of one spot which was 2.3. The mass in Allistaire’s sinus had reduced to about 6 which is till quite “avid” as they say. So while it is great that Allistaire had a good response to the chemo/antibody, would it be enough to move forward? What would forward mean?
The bad news was that there was also a patch of pneumonia on her lower right lobe of her lung. An active infection. While Allistaire has had absolutely no respiratory symptoms nor fevers, we all assumed an active infection was yet another slammed door to proceeding with the T-cells. In the past week it had come to light that Allistaire’s cardiac function was also too poor to qualify for the WT1 trial. Apparently deep in the details of the protocol was the requirement of an ejection fraction over 40, a currently impossible bar and one that could take months and months to achieve if ever it could. The problems just kept piling up, seeming to bar the way forward with the T-cells: poor cardiac function, active infection, Grade 3 toxicity due to ileus in addition to a lack of count (Neutrophil and platelet) recovery we had always known would be an issue. With the door to T-cells closed the only option would be more chemo but there’s no way to give her more chemo right now with an active infection brewing. Giving more chemo would just suppress her white blood cells all over again and allow the pneumonia to take over. She would need time for her body’s recovering immune system to fight the infection which also meant time for the cancer to grow back and spread. Everywhere my mind turned felt like slammed doors. Sten and I pressed our bodies together in long silent hugs, my legs weak underneath me, threatening to give way.
I went to sleep crying. I woke twice to dreams of being chased, hunted down. I woke for long hours in the early morning, hot tears and the slow realization that we might just really be done. We might need to take her home soon. Oh sure, it wouldn’t be right away. They wouldn’t kick us out while she has an ileus and an infection. They won’t just let her starve to death or intentionally let an infection overtake her. No, I knew they would continue to treat these issues. Home would only be an option once these were past. And for the first time, “quality of life,” was a term I was willing to hold in the forefront of my mind. Maybe “going down in flames,” wasn’t the only option. Maybe it would be better to let it happen slowly.
“Oh Lord, oh God, have mercy! Look down on these woes and make a way through, please Father.” I called out to the Lord intent on yielding to His Godhood – His ways being beyond my comprehension, but still calling out for mercy. The Israelites came to mind, pinned between the onslaught of the Egyptians and that vast body of the Red Sea. There was nowhere to turn, no seeming avenue of escape. And then the Lord did the incomprehensible. He parted the waters of the sea and they walked through on dry land. “Father, part the waters, make a way through,” I cried out.
JoMarie, Solveig and Jo drove away Tuesday morning. When it became clear that nothing big would be discussed that day or in the next few, Sten and I packed up the Suburban and I watched him drive away. Always the question hangs of what life will look like the next time we are together.
I returned to the hospital and found a very upset Allistaire in her room. She was so sad to have Daddy leave and her tummy was really hurting and the pain medicine didn’t seem to help. Nevertheless we would get up and make our loops around the Unit. Dr. Leger came toward us and slipped a paper in my hand – the Flow Cytometry results. No detectable cancer in her marrow. So great but still my heart slumped knowing the victory over cancer might still be defeated by these wretched side-effects of the very treatment that was actually succeeding at doing away with her cancer cells. Wouldn’t it be amazing if we found treatments for cancer that only killed the cancer cells? Wouldn’t it be phenomenal if we didn’t have to poison the kidneys and liver, kill muscle cells in the heart, destroy brain cells, crush hopes of future children by annihilating ovaries? What is just so blasted frustrating is that there really are treatments that might be able to cure Allistaire from cancer but the very treatment has been so ravaging that she is barred from the final blow to her cancer. The thought that there is a possible amazing treatment within hand’s reach but may never be attainable because chemo tore her heart, shocked the nerves of her gut to stop working, wiped out the white blood cells that could have defended her against pneumonia and battered her marrow so relentlessly that her life-giving blood cells can hardly rise back up – well it’s simply intolerable, maddening, staggeringly sad.
Dr. Leger told me she would be by shortly to talk with me. She told me that she’d finally had the chance to sit down with the radiologist and carefully go over all the images. The mass in her sinus, while still metabolically active as cancer, was actually substantially reduced in size! So wonderful. And then, I could not believe my ears, shook my head in wondrous disbelief. “If nothing gets worse, Dr. Egan plans to go to the IRB on Monday and ask for exceptions to be made for Allistaire. He’s hoping for a 48 hour turn around and plans to infuse the T-cells on Thursday.” WHAT???? Apparently Dr. Egan is optimistic that the IRB (Internal Review Board) will approve the exceptions he is asking for on Allistaire’s behalf and expects to have approval in time to give her the T-cells on Thursday. Wide eyes and jaw dropped in shock and smile. Apparently the protocol does not count an active infection as an exclusion so her pneumonia will not exclude her. Even so, she has no symptoms, is being treated with both powerful antibiotics and antifungal drugs and has a rising neutrophil count to rid her of the infection. But he will be asking for exclusions for her poor cardiac function, lack of sufficient count recovery and the Grade 3 Toxicity resulting from the ileus and thus need for TPN. I just can hardly take it in. Monday evening I was practically begging for those T-cells, those cells made just for Allistaire, those cells that may be her last hope, perhaps insufficient to cure, but maybe just to buy her some time for at least more life and maybe for the next step in treatment.
It’s a long shot. But then again, I look back not just over months but years and I see God’s hand toppling walls, making a way through when there seemed none, holding cancer at bay when it seemed unstoppable, orchestrating so very many circumstances to care for my child. So many seeming closed doors have been opened. Man, I have no clue what the future holds. This crazy life has shown me over and over that you don’t even know how life can change in a flash from morning to night. I am humbled by God’s gracious hand and I am humbled by the relentless hearts of these doctors who do not stop working to try to figure out how they can help Allistaire. They rewrote the protocol for this trial last fall to reduce the weight requirement in order to allow young children like Allistaire to have access to these cells. Dr. Egan went through an extensive process to make it possible for children to actually be given the infusion of cells at Seattle Children’s as before it was only set up for adults to get them at the University of Washington. Dr. Cooper and Dr. Egan have sent so many emails and had so many conversations trying to strategize on how to open the way for Allistaire. Even on his vacation, Dr. Cooper has continued to ponder how to care for my sweet girl. Dr. Leger, the attending doctor, is working in collaboration with Dr. Law and the rest of the heart failure team trying to get Allistaire’s heart in the best possible place. She connects with the GI team to consider how we might bring about an end of this ileus and converses with the Infectious Disease folks on what to do about her pneumonia. And then there is our sweet Dr. Tarlock, the very first oncologist we ever encountered, she’s always there in the backdrop, coordinating the details, asking questions, probing for answers. There are the scores and scores of nurses who draw labs, carefully entering Allistaire’s line many times every day, every time an opportunity for infection. They put up her meds on the pumps and listen to her little heart, listen for bowel tones, feels for pulses and warmth of extremities. The CNAs change linens, bring the scale to get her daily weight, weigh diapers and measure throw up all so we can track her fluid intake and output. They come every four hours to check her blood pressure, temperature and oxygen saturation. Mohammed and Bonnie are just two of the folks who clean our room and tediously clean the floors, all to rid the Unit of dangers like viruses and bacteria. Residents like Whitney comb the details of the plan of care, putting in orders, looking for and interpreting test results. Pharmacists problem solve medication interactions, proper dosing and work with the nutritionists to get just the right combination of electrolytes in her TPN. Amazing radiologists read scans and radiology techs like our dear Jamie make getting a CT fun and produce a good image. Dr. Geiduscheck, the cardiac anesthesiologist, carefully reviews Allistaire’s previous sedations and considers a plan and a backup plan to get her through these long scans and bone marrow test. The pathologist look down at her marrow through the microscope, arrange the Flow Cytometry test and her chromosomes to use FISH probes to look for her MLL mutation. Sweet Melissa arrives with a wheelchair to transport us from place to place on days with procedures and scans. There’s also Rosalie the Art Therpaist, Betsie the Music Therapist, Karen and Jeremey on the PAC (Pediatric Advanced Care) Team, Fred and Megan our social workers, and Carrie our Financial Counselor. This is a crazy long list and I know I am leaving out so many folks whose efforts God has used to sustain Allistaire’s life. I am gloriously indebted to so many wonderful people, people who don’t just do their job well, but whose hearts and voices cheer us on, wanting and hoping for the best, for a way through.
Today Allistaire was bright, full of joy, dancing in her bed. She had a little smear of poop in her diaper last night. I told her we would have a Poop Party when she finally started pooping again. She told me with the most gleeful voice, “Mommy, I had gas!” Yay! What wonderful things! Callie, the child life specialist came yesterday and played Model Magic with Allistaire much to Allistaire’s great joy. Today Sierra, the creative writing lady, came to listen to Allistaire tell stories and record them on paper. Somedays I just feel so overwhelmed with how good our life really is, because it really is just SO full! It is so radically different from my vision of what I would choose but the truth is it is simply bursting with wonderful people.
It’s a crazy long shot, these T-cells. Who knows? They may utterly fail and the end may soon come. But I choose to link fear to wonder, terror to hope, threat of death to a God who overcame death. There was an Obliteride team with cool blue jerseys, Adaptive Biotechnologies. I had to look them up. Turns out they do really cool stuff (I’ll include a video below) and started around a cafeteria table at Fred Hutch. In my search through their website I came upon a video which is the most helpful tool I have found yet to understanding these T-cells that are Allistaire’s hope. Watch the video. Don’t skip it. It is worth every second of your time. Let your mind be blown, your smile be broad, as you ponder the magnificent intricacies of your flesh, of actions being taken on your behalf a hundred thousand times a day without you even having to ask. My face could not contain the bursting smile of my heart as I witnessed just one wee bit of God’s gorgeous creation. The T-cells declare the wonder of my God, His wild beauty, His grace toward us. I choose to link my terror of Allistaire’s death with this God who makes the T-cell. I choose to yield to Him. I choose to worship the God of my immune system as the God who gets to choose the path of my life, who chooses Allistaire’s path. Not only do the sweep of stars above proclaim His glory, but so too here, deep within us, mysteries, wonders, lifetimes worth of exploration and they will continue to elude and excite with their complexity.
(Quick update: as of last night Allistaire had numerous toots and seven poopy diapers! She ate an entire bag of popcorn yesterday and has had no pain in her tummy for a day, no pain meds for almost 24 hours and hasn’t thrown up since Wednesday morning. It looks like this ileus may be over and just the need for a slow acclimation back to food and wean off TPN before us!!!!!)
Amazing video on How T-cells Work
Cool video on the Adaptive Immune System and technological advances to understand and harness it!
Tell Allistaire congrats on the toots and poops! We are so happy she is feeling better. Thanks for the fears and hopes expressed. Every word is a beautiful gift.
Wonderful news, you made my day!!
Prayers for continued news of opening doors. Thank you for sharing your story.
How T-cells work – amazing! Truly amazing. Only the God of the universe could design such a system! I’m so glad to hear that Allistaire is tooting and pooping and feeling better. I’ll be praying for the T-cell infusion to happen next Thursday, as hoped and planned. Keep us posted. Sending love…
Encouraging – so encouraging! I am so confident that the staff and physicians are so appreciative that you notice all their efforts (big and small) for Allistaire. Praying daily!
I have been reading your blog since Last year. We are in England and my daughter has been battling Wilms for the last 2 years. You have such a brave girl and am so pleased you can move forward with the T Cell trial xxx
Thanks for writing Rebecca – my friend, Andy, who we met here at Seattle Children’s and who is from our home town in Montana, has a daughter who had high risk Wilms. He has become quite an expert and major patient advocate. He has worked with national healthcare leaders, government leaders, doctors and the pharmaceutical company to get a trial for a new targeted drug for Wilms. If you are interested in talking with him, please let me know and I’ll pass on his contact info. He is a wonderful man and passionate about caring for and connecting families with Wilms – I think he has attempted to contact every Wilms family in the United States.
Thank you so much I have spoken with Andy before and he is indeed very passionate and gave me lots of useful information. For us in the UK we have a very different healthcare system and limited access to trials in the UK. American trials have to be personally funded and are just out of reach for so many families sadly…my daughter is currently off treatment and we pray she stays clear after her relapse and transplant. Your blog is so inspiring and amazing that new treatments and trials are becoming a reality. Love and strength to you All xx