Were it not for the last 24 hours I would have chosen a different title for this blog post, but the past day has been such an odd contrast to the preceding seven days that I can state only that we are eight days into this thing.
The first seven days of this transplant have been marked with Dr. Bleakley being remarkably smiley and saying on several occasions that Allistaire is doing better than she thought she would. This in turn has made me smile a lot as well! When Dr. Cooper stopped by briefly yesterday to check in on us, he was taken aback that when asked how I was doing, I responded, “Ecstatic.” Because, really, really, it is simply still a startling wonder that transplant has happened. What happens going forward is simply a matter of having to accept and respond to. No longer is there the great weight of, “will we make it to transplant, will this stop us?” Even her heart, though of course we want to continue to vigilantly care for it, no longer is a barrier to moving forward with this radical intervention of therapy. And as I said, the week has gone amazingly well.
Allistaire’s fever on the evening of her transplant was the first of about six. Blood cultures are drawn every 24 hours within which there is a fever and all continued to be negative for any evidence of infection. In addition, despite wrapping up her Flagyl therapy for C-Diff, she actually had increased diarrhea. The fevers and diarrhea, Dr. Bleakley told me, is evidence of the cytokine response happening within as Sten’s cells entered a foreign environment. Dr. Bleakley was quite pleased with this degree of cytokine storm as it was evidence of an immune effect happening but not one that raged out of control and seemed to impact her heart. Though all of this did make for some rough nights for both Sten and Allistaire as there were countless poopy diapers to change.
On Friday morning, January 15th, Allistaire had an echocardiogram and EKG to serve as a baseline going into getting Cyclophosphamide/Cytoxan and the associated hydration used to counteract the common side effect of bladder bleeding. Her function remained consistent with the previous echo done in mid-December, though her heart was very slightly dilated (2mm). Dr. Law was pleased with how she had weathered the first storm of this transplant. Her heart rate had also been quite elevated (150-160s) for several days which could not be accounted for by any measure of her heart function. He assumed it was related to the oncological realities happening with the fevers and cytokine effect. Indeed, once the cyclophosphamide wrapped up two days later and the fevers subsided, her heart rate down-trended nicely to 100-120.
Friday and Saturday she received one dose of cyclophosphamide each day in addition to hydration at 1.25 times her maintenance rate. Additionally, she was required to urinate every two hours with the urine being tested for blood. Thankfully, other than once when her platelets were very low, she either showed absolutely no blood or only the most trivial amount. The possibility for an acute cardiac hit was also monitored by tracking her BNP (Brain Natriuretic Peptide), a measure of heart distress, and troponin levels, which are evidence of heart muscle cell death. Thankfully, so far her troponin level has remained essentially undetectable which means there is no evidence of heart muscle cell death and her BNP has been low. A repeat echo was conducted on Monday and showed a slight decrease in heart function with an ejection fraction down from 42 to 37 and a slight additional increase in dilation. However, the cardiologist remained please with how well she had tolerated all of the hydration. Allistaire showed absolutely no signs of burden from what she went through. Her lungs have been clear and all clinical assessments have continued to be excellent.
The plan was to move Allistaire upstairs to the cancer unit after one final day in the ICU after the end of hydration. So yesterday afternoon we moved back up to the cancer unit into the very room we left a week prior; a room with a great view, Forest 7 room 219. Tuesday had been a day mostly spent waiting to move upstairs and by 4pm she was finally settled in for a nap in her old room. I headed out of the hospital for a few errands and just before 6pm got a call from the nurse that Allistaire had a raging nose bleed. I could hear Allistaire hysterical in the background. She had a horrific nose bleed back in November which was increasing her terror with what she now faced.
While I was on the phone, driving back to the hospital as fast as rainy congested streets allowed, I made sure to ask that platelets had been ordered STAT! Yes, yes the word came. When I walked into the room there were countless bloody tissues and the sweet BMT PA, Agne, attempting to help Allistaire with holding her nose. I took over nose clamping duties while we waited desperately for platelets to come. An hour passed and I kept being told the platelets were on their way, almost here. Allistaire was settled for a while with me clamping her nose with shocking grip. I was actually in awe that my hand muscles could keep up with the demand on them. For a while Allistaire had calmed and quieted but then with absolute terror in her eyes she shot up and screamed that she needed to throw up. What came out can only be described as what it might look like to hurl out of your mouth a gutted-animal, so thick and plentiful was the curdled and clotted blood (see very last picture at end of post). It was horrifying to watch that projecting out of her mouth. She cried and screamed and I’m sure must have felt like she couldn’t breath with her nose clamped and huge wads of blood filling her throat.
The platelets were still supposedly coming but were never arriving. I found myself getting madder and madder, sadder and sadder. To quote the movie, “Home,” I was “sad-mad.” I hated that my little girl had to endure such horrors; not just the repulsiveness and scariness of this, but the reality that her own body is under constant attack from a disease that destroys the part of her that is supposed to protect and sustain life. Yet, I was so very thankful that help was on its way despite taking a ridiculously long time. As I sat there clamping Allistaire’s nose, trying to calm her, trying to press down my own angst, I harkened back to reading about the realities of leukemia prior to the 1950’s, in a time before platelet transfusions. This is well described by Dr. Emil J. Freireich, who “still can’t forget his first exposure to childhood leukemia, the heart-rending and terrifying fatal cancer his boss instructed him to cure. Freireich, then a hotshot young researcher whose only knowledge of pediatrics came from medical school, took over the care of kids with the disease, kids with all manner of lumps, bruises, headaches, infections, fevers and, most of all, bleeding that Freireich says made the hospital unit ‘look like a butcher shop.’ Ninety percent of them were dead in a week. ‘You cannot imagine how horrible it was,’ says Freireich, 88, nearing his 50th anniversary at M.D. Anderson Cancer Center. ‘These were 3-, 4-, 5-year-old kids bleeding to death, bleeding out of their ears, eyes, nose, skin and bowels, bleeding internally, vomiting blood. It was a parent’s greatest horror.” (Legendary Oncologist Returns to The Limelight)
Finally, two hours later the platelets came; a simple little bag containing a minimum of 150,000,000,000 platelets. Sometime ago I learned that platelets are not actually true cells but are produced within a large cell called a Megakaryocyte, each of which can produce two to five thousand platelets. And until Dr. Freireich discovered that lack of platelets were what caused the horrific hemorrhaging and then developed a method to transfuse platelets, children with leukemia never even had a chance to really have their cancer treated, they just bled out and died rapidly. In reading up more on Freireich, I learned that he was also the first to have the idea to transfuse granulocytes and to develop a means for accomplishing this. He co-invented the continuous-flow blood-cell separator, was part of the research group that first began to use antibiotics empirically to control infection and determined that you start to bleed when your platelets reach 10,000 – this is the same threshold used today over fifty years later. Perhaps most significantly, Dr. Freireich and his closest collaborator, Dr. Frei (both had the first name Emil if you can imagine that?!), were the first to use aggressive doses and combination doses of chemotherapy to attempt to cure Acute Lymphoblastic Leukemia. They were met with extreme opposition but persevered and succeeded!
If I had my dream come true, I would sit down before Dr. Emil J. Freireich and attempt with all my heart to say thank you. Over and over my child’s life has been sustained because of his direct efforts and accomplishments! Thank you Dr. Freireich, before Allistaire was born, even before I was born, you labored endlessly in the face of incredibly opposition, belittling, and in terrible conditions because you were determined to find a way through for these kids. You don’t know her, but my little girl, Allistaire Kieron Anderson is alive today because of you! You! Her life is part of the fruit of your labor and once again I find myself deeply and joyfully indebted to total strangers. There is a yearning in me to thank this man, to look into his eyes, or perhaps to even attempt a great hug to say thank you a hundred-million times over. Allistaire might as well have been pulled from a burning house by a stranger, but not just once, over and over and over. I often find myself dumbfounded, gaping in the mouth of all we have to be thankful for, the magnitude of our abundance staggers!
And it continues! We had a few bumpy days but made it through. After the raging bloody nose on Tuesday night, Allistaire finally got all settled in bed for the night. I stood at the foot of the bed while the nurse drew some labs and I happened to have the monitor in sight when all of a sudden, Allistaire’s heart rate jumped from about 100-110 to 208 with a ragged tight swath of crazed up and down peaks of her heart rate. In a second it was over and I asked out loud, “what was that? I have never seen that!” I asked that Allistaire’s electrolytes be checked, thinking that with all that blood loss, they might be wacky and this can throw off the rhythm of your heart. The hospitalist ordered a STAT EKG and electrolytes were checked. Everything seemed normal with the exception of a lower potassium, but nothing crazy. So we went to bed finally around midnight. After waking repeatedly every hour for diapers and the nurse coming in, the doctor woke me about 4:45am to say there were going to call a RRT (Rapid Response Team). This is where a risk nurse comes and evaluates your child and determines whether or not more intense intervention is necessary and the child is often transferred to the ICU. What prompted this was another episode of what the monitor called, “VTac,” which refers to Ventricular Tachycardia. Because VTac can be very dangerous, Allistaire was transferred to the ICU where they could better monitor, and actually record for later review, her heart rhythm. So only about twelve hours after moving to the cancer unit, down to the ICU she went, into the same exact room, Forest 6 room 321. Good grief.
The next morning she had an echocardiogram to determine if there was any decrease in her heart function. A more dilated heart is more likely to have arrhythmias. Because she had thrown up a total of 450 ml of blood and the cardiologists want to keep her hematocrit above 27, red blood was ordered and got underway. And despite getting a transfusion of platelets the night before, because it was decided to raise her transfusion threshold from 10 to 50 to really stop the bleeding that might not only be in her nose, platelets were also ordered. So the red blood was paused while the platelets went in but the red blood expired (it only last 4 hours once the bag is spiked) before there was a chance to get in anymore than 60ml. Her hematocrit was checked again and it was down to 19 (standard transfusion threshold is 20 so this was exceptionally low for her). Blood was ordered once again. Throughout the day Allistaire was extremely tired and not at all interactive. She was incredibly worn out from the nose bleed trauma, a hectic night with countless interruptions, and a very low hematocrit. Our nurse had expressed several times how she just didn’t seem like her normal self.
We were hoping to get her blood started and down for a nap when the nurse discovered a tiny pin-prick of a hole in her red lumen. IV team was immediately called to repair the line and to also place an IV so she could get blood and meds that obviously couldn’t wait the 24 hours the line is out of commission while the glue in the repair sets up. Despite much screaming on Allistaire’s part, another nurse was able to place an IV in her hand and off she went to sleep, the blood flowing in. About two hours later, our nurse called me to tell me, “your girl is back and wants to talk to you.” Allistaire jumped on the phone and immediately you could hear the difference. Blood. Blood! She was alive! The little worn out girl who’d lost her spunk needed blood! Hey, have you donated blood recently? Ever? Perhaps this will sound pushy and rude, but really, if you say you love Allistaire, if you say you want to know what you can do to help, anything, well then, give blood! Allistaire would never, ever have a bit of chance to fight this cancer if it were not for the countless blood transfusions she’s received because real people were willing go give of their time and endure a wee bit of discomfort to give something from within themselves that can literally save people’s lives. Isn’t that wild? Can you cure cancer? Can I? Probably not, but she has no chance to try to see if this treatment works if she doesn’t have blood! Enough already? Maybe. And please, those of you that honestly can’t give blood…you lived in the U.K. for some period of time or were in a malaria laden country or whatever disqualifies you from giving, fine. No worries. I’m talking to all of you out there who can give blood and either are afraid or haven’t managed to find the time. Please. Please, for Allistaire, for so many whose lives could not be sustained otherwise, make a point to do it now!
Late in the afternoon the cardiologist finally came by to report that Allistaire’s heart function was totally stable, identical to the last echo. He talked with me at length about why he believed that Allistaire was probably just fine and suspected that what had actually occurred could have been SVTac, or Supraventricular Tachycardia, which is also an irregular heart rhythm that begins much higher up in the heart and is far more benign than VTac. She had no more episodes of irregular heart rhythms and he felt that by the next morning she should be able to safely go back to the Cancer Unit. I was so incredibly relieved. Just to ensure one more measure of caution, it was decided Allistaire would wear a Holter Monitor for 48 hours that can, in a much more detailed way, record her heart rhythm.
Once again we made the transition from the ICU to the Cancer Unit, back into our fabulous room 219 which they had held for us. With the concern for Allistaire’s heart fading a bit, the issue of her line came to the forefront. Allistaire was complaining a lot about her hand hurting where her IV was placed and when she kept screaming when the nurse tried to flush the line, it was determined that it had to be removed and another placed. In the mean time, the nurse attempted to flush the newly repaired red lumen on her Hickman Catheter, but to no avail. She could hardly get anything to flush through and she certainly could not get blood to draw back. So she put a dose of tPA (Tissue Plasminogen Activator) in the line and planned to wait an hour before trying again. The IV team came and after two failed attempts to get in an IV, they left for a while. The nurse then tried to flush and draw back blood again from the line but it still wasn’t working. At this point Allistaire is really worked up because she knows that if her line doesn’t work then she’ll have to get more IVs. And indeed, IV team came back, this time successfully placing an IV in the hand which is the same hand she sucks her thumb. She was horribly sad.
Then out of the blue I am told the ultrasound tech is coming to look at her line. At this point I’m totally confused because just the day before they did an X-ray to look at the positioning of her line with the concern that if the tip of the Hickman catheter is too far down into the ventricle of the heart, it can cause agitation and in turn stimulate an arrhythmia. Turns out the purpose of the ultrasound was to look at her vasculature in her neck and chest to determine where a new line could be placed. Before I knew it I was talking to the surgeons, signing consent and talking with the anesthesiologist about surgery for a new line to be placed the next day on Friday. All the while I was thinking, “HOLD UP!! Let’s just slow this thing down a bit and see if we can’t get this line working.” The BMT PA was concerned that because the line was so old, that the repair wouldn’t work and we needed to get moving on planning for a new line placement. Understanding her point but being none too pleased about the idea of Allistaire having surgery with no white blood cells to fight infection or about more cuts into her already scarred up body, I asked that we please try more tPA. This time it was left for two hours and it worked beautifully! Allistaire was beside herself with excitement that the IV was coming out. And her line has continued to work great and surgery was scratched off the week’s T0-Do’s.
Despite some rocky, odd days, Allistaire is doing phenomenally well! She is closer and closer to a true baldy top as most of her hair has fallen away, leaving only her signature blonde fringe at the hairline around her face and a scattering of hairs on the rest of her head that sort of makes her have a bit of a glow. She’s happy and hilarious. Her mouth sores have mostly healed and she’s able to take all of her meds by mouth with the exception of those that can only be given IV. She’s drinking her required fluids each day and eating enough calories to not need TPN (IV nutrition). Her labs and vitals have been great, lungs are clear and her heart seems to be doing well. Her really only struggles are keeping her platelets high enough to avoid nose bleeds and the mucositis in her bottom. Because radiation and chemotherapy are most effective at killing rapidly dividing cells, you lose your hair and the cells that line your digestive tract all the way from your mouth and out the other end, are damaged and die. So for Allistaire, it hurts really bad to urinate and poop. A urine sample tested negative for a UTI and for BK virus (Bladder Kidney Virus) which is what leads the doctors to believe this is just mucositis that will take time to improve. All in all she is just doing amazing! She tested negative for C-Diff today which means she is now only in Contact Isolation, not Contact-Enteric Isolation, which allows her at long last to leave her room and go for a walk around the Unit. So for the first time in three weeks, Allistaire had the freedom to walk the halls of the Unit. When the front desk Unit Coordinator greeted her by name, Allistaire raised her hand in questioning and said, “How did I get to be so famous?” Oh my.
We have twelve days of transplant behind us. Dr. Bleakley estimated that Allistaire would “engraft,” around Day+21. Engraftment is when the stem cells, infused into the peripheral blood, have migrated to the bone marrow and begun to reproduce. An ANC (Absolute Neutrophil Count) of 500 two days in a row is considered official engraftment. This is a bit longer of a time frame than you would typically expect in a Peripheral Stem Cell Transplant, but because she received Cyclophosphamide on Days+3 & 4, the timing gets elongated. But once her cells start to come in, she will finally have white blood cells that begin to repair the damage done by the chemo and radiation. Of course this is also when you can begin to see signs of GVHD (Graft Versus Host Disease). Her first bone marrow test will be on Day+28.
I am pretty much in awe of how things have gone thus far. I am so very thankful for each day we are able to walk forward. But my heart remains heavy, not just for Allistaire, but for other moms dear to me. At this time I think of my friend Julie Guillot, whose son Zach, was undergoing his third transplant for AML at this time of the year two years ago. His liver ended up suffering from VOD/SOS and he died in the ICU of internal bleeding on February 7, 2014. She and Zach walk these halls in my heart with me. I think of sweet Stevie up in a darkened room on the 8th floor. Fighting a raging bacterial infection and her marrow and blood full of leukemia with her newborn baby sister in the bassinet next to her, while her mom Keisha attends to her every need and her dad is back in Montana working to provide for his family. Keisha and Stevie might as well be Allistaire and I. What happens for them feels deeply personal to us. We hold them tight. I think of bright Ava who lives in Chicago, and who like Lilly did, fights bi-phenotypic leukemia which means her leukemia has characteristics of both ALL and AML. A year after her transplant, trace amounts of her disease has returned in her skin and marrow. Her parents strive to know what the Lord would have them do walking forward. I think of dear Heather, who everyday must live without hearing Lilly’s voice.
Yes, Dr. Emil J. Freireich contributed enormously to the fight against leukemia and is credited with a lot of why you’ll hear leukemia has a 90% cure rate. But not all leukemias are the same, and AML is a beast far, far different than ALL. Around half of children with AML will die. There is still a long, long way to go to get to such an amazing prognosis for children with AML. Won’t it be amazing one day when we reflect on these early years of the 21st century and talk about how it all changed, a world where most kids with AML died and then tenacious cancer researchers refused to give up, they pressed on despite all the obstacles. Won’t it be absolutely beautiful when treatment for AML doesn’t break hearts, literal and figurative?!
“For their parents, it was agony. In order to have a chance at life – they were told – their child had to be brought savagely and repeatedly to the brink of death.” Malcolm Gladwell, “David & Goliath”
So true. We walk forward into dark terrors because we have no choice, no alternative. I hope desperately that in the next fifty years, cancer treatment will look nothing like it does today and it won’t have such holistic ravaging effects. Lord hear our prayer!
This is the best bedtime story ever! So incredibly happy to read this amazing news. So sorry the bumps the last few days have been big and yet joyful to tears that all is well! I think about your sweet girl every day. Can’t wait to see that smile walk or ride by our room!
Jai, we continue to pray, hope and have that relentless Faith you’ve time and time tought us to have. Love hearing of her smiles and happiness – wish beyond all they find a cure and find it fast! Give that little cutie a hug from the Stupack clan.
Praying on.Hoping on! I love what her name means. Keep fighting on small one!
Great yet intense photos. Represents the trials and the joys that are so present during this long journey. Thank you for always sharing your heart and painting a picture of the good and ugly of suffering. May you continue to walk in His shadow.
After reading I literally exhaled, “oh, thank you, LORD.” (our hearts have been with you) On Christ the Solid Rock you stand….may He continue to so beautifully sustain you….
This heartwwarming journey, your fervent faith, and the true definition of hope continues to inspire us all…I so hope to someday meet this little Allistaire. Sending from Lennep, Montana our constant prayers for a timely and complete healing. And may God hold you all in the palm of His hand these days ahead – keep up the good fight! Love, Gayle & Rick Berg
I have blood in allistaires name on December 21 and will continue to do every time I am able.