It’s been a while and it has been a full time. A lot has transpired. Here it is in brief:
On Thursday, October 3rd, Allistaire was officially discharged from Seattle Cancer Care Alliance by sweet Dr. Delaney and her team. In sum, all the Day + 80 testing showed that all of Allistaire’s organs are in good working order and that they have determined that she does not have chronic GVHD (at least at this point). These are two monumentally wonderful things!!!!
The big shocker of the meeting was the idea that a second transplant may not end up being necessary. In Dr. Delaney’s view, if Allistaire were to continue to remain in remission through the end of the 6 courses of Azacitidine chemo, they would not recommend a transplant, as the risks would not, at that point, outweigh the possibility that she may be in a long-term remission. She went through each of Allistaire’s bone marrow tests starting with the one just prior to transplant. In her view, Allistaire probably did not relapse post transplant, but rather simply still had minimal residual disease. Apparently this is a better scenario. She said that while the Day + 28 marrow showed zero percent, there were also relatively few cells, which is common at that point post transplant. Had Allistaire been in remission prior to transplant, the Day 28 marrow would have carried more weight as truly being an accurate zero percent (no one cared to mention this nuance to me back then). Dr. Delaney described how there is a delicate balance of immune suppression where enough must be given at the time of transplant in order to prevent rejection of the graft (new donor cells) but then, as the donor cells engraft, to also prevent the graft from outright attacking the host (Allistaire). The new cells need time to get established so you don’t want too much immune suppressants but you must again, protect the host body from assault by the new cells that recognize Allistaire as foreign.
Once Allistaire’s cancer was detectable, there was the increased need to pull back on the immune suppression as much as safely as possible in order to give the donor/graft cells as much ability as possible to identify and destroy the remaining cancer cells. What Dr. Delaney hopes, and believes is possible, is that we have hit this sweet spot where the transplant wiped out the vast bulk of her disease, and now enough time has passed for the graft to be fully established, give a little chemo to help clear the few remaining cancer cells, pull back on the immune suppressants more and hope to maximize the graft versus leukemia (GVL) phenomenon. From the beginning (prior to transplant) , it was abundantly clear that Allistaire’s cancer would never be cured by chemotherapy alone. We were always going to need that mysterious and beautiful GVL. So it seems that when I was so emphatically told that Allistaire’s only chance of survival was to have another transplant, that was accurate in terms of all previous statistics. Dr. Delaney made the statement that as far as she knows, Allistaire is the highest risk patient they have ever transplanted. I assume this means high risk in terms of amount of disease given the enormous amount in the marrow in addition to the fact that it was in eight additional places in her body outside of her marrow. Allistaire is on a road in which there are no numbers to predict her course – pretty exciting, terrifying and total and utter gift!
So today Allistaire has long been off the immune suppressant Tacrolimus, and is currently tapering her steroid, prednisone. So far she is doing well with her taper which, assuming she has no GVHD flare, should end on November 2nd. At that point she would only be receiving 3ml of Prednisone every other day. I’m not sure how long this would continue before a further tapering. As the taper nears the end, however, the risk of a GVHD flare increases because of the more substantial decrease of the immune suppressing steroids. She is scheduled to be seen by the Continuing Care Clinic at SCCA one week after the end of her scheduled taper.
As of today, Allistaire has completed four of the seven days of this third round of Azacitidine. She is handling it extremely well, and now that I am giving her more consistent Zofran for nausea, her tummy seems to be doing better than before. For some reason, I have foolishly had the mentality that because she is not in the hospital, she does not need as many meds. This is absurd. This time around I’ve been giving Zofran about every 8 hours, as they do in the hospital, and she has yet to throw up and so far is still eating rather well. Her blood counts continue to do spectacularly.
The two looming issues this week has been her heart function and the much-anticipated chimerism tests. On Tuesday morning, she had a surveillance echocardiogram which showed a drop in her heart function since the last echo in September for the Day + 80 workup. There was a drop in her Ejection Fraction from 53 to 50 (55 being the low-end of normal and a drop in her Shortening Fraction from 31 (her base-line before diagnosis) to 25 (28 being the low-end of normal). Our savvy Dr. Gardner, got us into the cardiologist the next day. Apparently it usually takes two months to get in on the schedule. We saw cardiologist, Dr. Sebrina Law who took copious notes. In summary, she feels that Allistaire has very mild chemotherapy induced cardio myopathy. Her EKG, which measures the electrical components of her heart, was perfectly normal. Additionally, her heart is not dilated, nor does she have any symptoms of decreased heart function: lack of appetite, lack of energy, shortness of breath. Because there is no dilation nor symptoms, she chose only to increase her enalapril dose to the maximum of what her weight allows, which only bumped it up an additional .5 ml twice a day. She said they will just follow her and want to see her again in three months, though I’m guessing, Dr. Pollard will want her in much sooner than that, as it is typical to get echos done after each round of chemo. I was very thankful that her heart issues are mild and have the possibility of being reversible.
People are always asking me how I am, how are things going? They will comment ceaselessly, that Allistaire looks SO good! Every time these two things occur – this question and this comment – I cringe. How do I answer how I am? It’s complicated. I’m often doing great on one level, but there is a way in which something is so fundamentally wrong. And Allistaire has looked great by all external measures a hundred times and often there was cancer lurking, which if not stopped, will, without question, eventually take her life. So for me, the last several days have been lovely with all the splendor of reds and oranges and yellows, foggy mornings and brilliant crisp afternoons. They’ve been quite busy days with chemo every morning and then multiple additional appointments and other events. But lingering in the back of my mind is the question of those chimerism tests. Every month a chimerism test is done to determine the percent of donor cells in her peripheral blood versus the percent of her own cells. Apparently, it is common to only do bone marrow tests every other round with this chemotherapy regimen. So Dr. Pollard and I agreed that this time, at the end of round 2, we would only do a chimerism test. The thought is that a chimerism test can give a pretty good idea if something is going wrong in the marrow. You could conceivably have a small amount of cancer in your marrow that would not show up in your peripheral blood chimerisms, but if anything significant were happening, it would show up with that test. At this point, this chemo is Allistaire’s only option for treatment. Were she to have over 5% or more cancer in her marrow, she would then be potentially eligible for few different clinical trials. This means that if there is only a small amount of disease, we would only have the choice to stay the course with the Azacitidine. What this comes down to is a bit of willful ignorance. Why know if there is some small amount of cancer if there’s nothing you would or could do differently? Why not have a chance to have one more month a little less burdened? I had a horrible dream about the chimerism tests last night. I dreamt Dr. Pollard called and said they were 84% and I kept yelling out that was bad, so very bad! This morning as Allistaire was getting her chemo, I mentioned to the nurse my anxiousness for those results. When she couldn’t find them herself, she said she would ask Dr. Gardner to check to see if they’d come back. Dr. Gardner (the doctor who sat down with Sten and I and gave us Allistaire’s original diagnosis), walked to our little infusion room with a bright green sticky note. All three cell lines are still 100% donor. Oh Father in heaven, what a relief, what a joy!
In between being discharged from SCCA, returning to the care of Dr. Pollard at Children’s and beginning this next cycle of chemo, Allistaire and I had some seriously packed joyous days. October 9 -11th my beloved sister-in-law, Jess, and little nephew, Per, came for a visit. We had a wonderful time! I cherished Jess’s teary eyes as she sat on the couch at Ron Don and relayed how being present with us helped her to understand the reality we’ve been walking. It was a gift to me – her compassion, empathy and presence. And of course, Allistaire was thoroughly excited to have Jess and Per around to entreat into playing her silly games. Then on Friday night, October 11th, the four of us flew home to Bozeman, thanks to the generosity of one of my dear friends.
Allistaire and I had nine fantastic days at home, enjoying family and the splendor of the changing of seasons. In Bozeman, the transition from summer to fall to winter can be quite speedy. The cottonwoods and aspens had all turned blazing oranges and yellows and there was intermittent snow and bright blue skies. We just had such delightful days at home – Allistaire and Solveig dancing, coloring, pretending to be cats, playing outside together. Solveig and I spent a day together and Sten and I had a day to go hiking up Middle Cottonwood and then walking around downtown a bit and enjoying a nice meal. All in all a wonderful time. Allistaire also had one clinic visit with our local pediatrician, Dr. Ostrowski and then we had to go down to the cancer center to get labs drawn. It was strange and lovely to see the sign on the window saying that the Bozeman Deaconness Cancer Center was partners with Seattle Cancer Care Alliance. We had to wait nearly four hours for labs and I was getting pretty nervous but thankfully everything was great. In addition, to all the other great times, I was able to go to my home church twice and to my old bible study, BSF, once. It was uniquely wonderful to once again be able to worship, take communion, hear the Word of God taught and simply be with so many other believers who have loved us and prayed for us so faithfully. It was all pure gift!
So home – home is a place where not every single part of our lives is directly linked to cancer. At home there is invigorating blue skies and cold, where you notice things like stars and wind ruffling aspen leaves, and the brightness of moon setting as the sky turns pink in the Eastern sky. At home I am mom to two girls and I clean and cook and organize. At home I am wife and I don’t sleep alone in a queen size bed though some mornings I’d stretch out my arm, searching in the dark to find my husband, only to remember, oh yes, he’s gone up on the hill behind the house to hunt for elk. Home is where we are sisters, Allistaire and I – she to Solveig and I to Jess, Jo and Jessica. Home is all four of us sitting at the kitchen counter eating pancakes and soup and the whole family gathering together in a swirl of conversation and amazing food and the best sangria on earth. Home is where I tend my ferns and other myriad of plants and where Sten and I sit in the evenings watching Solveig and Allistaire dance like the craziest two wild cats. Home is where my Father-in-law hits a bear driving to the airport and where his eyes tear up as he holds Allistaire, listening to her every word. Home is where relationships are complicated and priorities are blurred. Cancer is no longer the only defining facet of your life.
For those of you who have looked at me as something extraordinary, you need not. For those of you who have thought, “I couldn’t do that,” yes you could. Here’s the deal – ordinary life is unbelievably complicated and often its ordinariness, its normalcy, its constant, predictable cycles and routines make it harder to have clearness of vision and courage and inertia to break out of patterns. Cancer helps with that. Cancer rips you right out of comfort and security and predictability. Cancer demands that you never take your eye off of it. Cancer is an obvious predator. Do you think I had choice? Did I yearn to know God more? Yes, Yes, Yes, but I could never have chosen to cut off my arm and gouge out my eye. Yes, I am wounded you see. I have been given sight at great cost. I once said, out-loud, that it seemed noble to have a dying child, as I grumbled and groaned internally about a private, but devastating situation. Not two months later, I did have a dying child. It’s not noble. It’s brutally hard, but so is being a wife, a mom, a sister, a daughter, an employee, a citizen of these United States, a human on this globe, a child of God. Cancer allows me the luxury of setting aside nearly all other priorities – when there is a hand gripping your throat, cutting off your air, you find yourself unpreoccupied with what color you should paint the trim or what to make for dinner or if you should put more money away for retirement, what to do if maybe your blood pressure is a bit too high or what’s happening in Syria or those being sex-trafficked in Moldova. There is a knife about to slit your throat and all your energy and attention if funneled into preserving life.
Thank the Lord, ordinary life is not lived at this high pitch. The sounds and colors are a bit more muddled. I don’t have the answer for you. I guess, just know that I am no different from you and though our struggle for Allistaire’s life, and my struggle to submit my idea of how I want life to be, to the perfectly glorious plan God has in store, is perhaps more public and/or more seemingly dramatic than the life you might find yourself living, there is not less at stake. I guess at the core, I find it extraordinarily challenging to live a life with eternity in view. I am constantly lulled and swayed by the things that are ordinary and common to desire in this life. I am brain washed by the standards of what is considered a “good” life. God’s ways are SO NOT our human ways. The things He cares about are so utterly different from much of what I spend immense energy, emotion, time and resources pursuing. It is staggering how much effort I put toward accomplishing what I want. But you see, again, things are not so clear, not so black and white. There are plenty of overlaps with God’s many blessings and our desires. We are chimeras ourselves. We are both made in the image of the One True God and so yearn for that which is from Him, and we are fallen, forlorn creatures, bent on our own simple, earthly hopes and desires. We are eternal and magnificent and depraved and broken. The hope of eternity through Christ Jesus, is that at last, that one beast will be put utterly to death and only our glorious, made-in-the-likeness-of-God selves will be manifest. Then turmoil will cease and life and peace will prevail.
My Aunt Jennifer found this prayer and ask that I post it to bless others. It is simple and profound. I wish cancer on no one, but I do hope for there to be a way to gain what is received in the stripping and tearing of one’s life with serious illness. Much has been taken – taken in a flash and wrestled away from a white-knuckled fist. And abundance has overflowed and life has sprung up. This was written by a dad who lost his son to neuroblastoma after a 6-year fight, something I cannot bring myself to imagine.
A Cancer Prayer by Stephen R. Chance
Dear God, we have prayed often for you to rid our child’s body of cancer and never let it come back.
We have prayed often for you to spare his body the harsh effects of the treatments he must endure.
We have prayed for mercy and strength. But we have not yet prayed for the things about cancer we would like to keep.
Please let us keep the love that has been laid bare and that binds our family, our friends, and our community.
Please let us keep our preferences to be together.
Please let us keep our appreciation for simple pleasures.
Please let us keep our ability to not sweat the small stuff.
Please let us keep our tolerance for each other’s needs.
Please let us keep our patient smiles responsive to normal childhood conflicts rather than the irritation that so easily ensues.
Please let us keep our tendency to treat others tenderly knowing that we don’t know all the heart breaks they have felt.
Please let us keep the ease with which new acquaintances become good friends.
Please let us keep our enhanced appreciation for nature.
Please let us keep our motivation to live vigorously now rather than planning to live later.
Please let us keep our calling to help others fight cancer with better weapons and smarter generals.
Please let us keep our need to reciprocate the wonderfully kind favors we have received.
Please let us keep the strength to press on when faced with other illnesses, deaths, and human tragedies.
Please let us keep You at the center of our lives during good times, too.