Monthly Archives: August 2015

Aug31

T-Cells Tomorrow/Tuesday!!!!

Posted on August 31, 2015 by Conglomeration of Joy

The last several days have been a whirlwind so this will be brief…

Tomorrow is the big day which really, won’t look like much at all on the surface. Like countless days before, Allistaire will have labs, see the doctor and have an infusion.

The day begins at 8am at Seattle Cancer Care Alliance with a lab draw followed by being seen by Dr. Ann Wolfrey, the BMT (Bone Marrow Transplant) doctor who is assigned to this trial. Per trial protocol, she will examine Allistaire and make sure she is fit to proceed with the T-cell infusion. We will then head over to Seattle Children’s Hospital Hem/Onc (Hematology/Oncology) Infusion Clinic. Around noon, the research nurse for the trial will arrive with the cells and the two-hour infusion will begin. Allistaire will be closely monitored in clinic until 5pm at which time she’ll transfer just down the hall to the Clinical Research Center where she and I will spend the night. Dr. Wolfrey will also be spending the night in order to respond to any issues that could come up and to examine Allistaire in the morning. Assuming all is well, she’ll be done around 8 in the morning.

Severe reactions to the T-cell infusions have not been seen on this trial as is the case with the CAR (Chimeric Antigen Receptor) T-cells used to combat the more common type of childhood cancer, ALL. This is both good and bad. Because of the poor condition of Allistaire’s heart, she would not qualify for the CAR T-cell trial were she to have ALL. However, the extreme immune response may also be indicative of the effectiveness and amazing success seen over the past two years with this new ALL treatment. As I have said, Allistaire will actually be the first child to receive these genetically modified T-cells that target the WT1 protein on leukemia cells. One thing that makes her different from other participants on this trial, besides being a child, is that she is on absolutely no immune suppressants. Most folks on the trial have much more recently had a bone marrow transplant and are likely to have at least some GVHD (Graft Versus Host Disease) which necessitates the use of some immune suppressants. While Allistaire had mild acute GVHD after her bone marrow transplant, she has been off of steroids for well over a year so these T-cells will have nothing to suppress or hinder them. Drops in blood pressure and fever are possible signs of an immune response. Actually determing the effectiveness of these cells for Allistaire would take much longer and really can only be determined with the scans and bone marrow tests she always has to monitor her cancer, none of which have yet been scheduled for the future.

I am so thankful for this open door. It would have been a very hard pill to swallow if Allistaire had never had the opportunity to have this genetically modified T-cell infusion, knowing these cells were crafted just for her. At the same time, it has been a very long time since her last chemo and this process of gaining the IRB approval has added weeks to the time that her cancer has had the opportunity to grow. Honestly, the doctors are not super optimistic about the effectiveness of these T-cells against chloromas which are Allistaire’s biggest challenge. Boy would I just love it if these T-cells were her cure and we could at long last be done with this whole crazy thing. On the other hand, if they could just buy her a chunk of time in which her heart could continue to repair and get stronger so that she could go onto have a second bone marrow transplant, well, that would be awesome. I can’t think too much about it though honestly. Even a good road ahead would necessitate many more months. I’m flat worn out.

Another mom we met months and months ago stopped me in the parking garage at the hospital today. Her little guy has neuroblastoma and despite doing all sorts of crazy intense treatment, he’s not in remission. She asked me how I do this. I didn’t tell her I rely on God. I told her sometimes I think I’m going to lose my mind. Sometimes I feel like I’m being crushed in a vice. But what choice do we have? I asked if she’ll be in clinic tomorrow and she said yes. I want her to know I feel the searing pain, the deep, deep ache. Jesus comes to us in our sorrow, in our broken heap of ourselves, our messy, screwed up lives. He mourns with us. I mourn with her. I mourn with another mom who lost her sweet girl earlier this spring. She amazingly, courageously, compassionately texts me regularly to convey her sweet heart toward us, cheering us on. I so want Allistiare to live. But sometimes I wonder, am I to cross over that line that I might sit and mourn with those who have lost their child? Am I to know that loss that I might have a voice in that dark, brutal land? With weeping heart and trembling hand, quavering voice, may I sing of a God who meets us in the dark, pointing to His beauty, resting in His wild audacious promises of redemption, or resurrection, of love that defies our small ideas of good.

I flew back to Seattle from Bozeman early this morning. I went home for just over 48 hours so I could be there for Solveig’s birthday party, to witness the mysterious tribe of 4th graders unfurling, running laps around the house and through the yard, squirt guns and chocolate cake and massive balloons and Solveig giggling over the fact that Jake wrote, “Love Jake,” on her birthday card. As our plane headed west the clouds slowly increased. We flew at 25,000 feet. I thought I could make out the great curving rend of land to the east of Whitehall and then the scarred earth of the mine nearby. Little flits of clouds became strangely speedy fleeces blocking the land. Here and there whole canyons and low places where entirely engulfed in white. Having grown up in Washington, countless days passed with that blanket of gray, drab, draped over the curvature of our wee bit of sky. A smile flooded by fatigued face as I remembered the first time I flew up out of the clouds of Seattle as a teenager into a brilliant azure sky. It was disorienting in a laughable, delightful sort of way. But, but…I thought the world was gray and drab and depressing?! And all this time, just beyond the scope of my eyes there existed a beautiful reality far more vast in its expanse than my view of horizon to horizon? So my view is not all there is?

The clouds, they come and go. The blue of sky is always there, always, even when I cannot see it at all, even when it seems the whole world is made of drab grey. Father above, thank you for your constancy, your vastness, your reality that transcends my transient life and circumstances. Tomorrow is the day you have made, and I will be glad in it!

By the way, tomorrow Allistaire will wear a very special shirt. It is the same shirt, just two sizes bigger, than the one she wore on a very special day just over two years ago. On June 18, 2013, Allistaire was given another infusion, one that like that of tomorrow, looked deceptively simple and uneventful. On that day, Allistaire was given the stem cells of a woman from the other side of the planet, in order to “rescue” her, in order to give her a chance at new life after the old marrow had been wiped away. Tomorrow, that woman’s compassionate, generous heart has made a way, yet again, for Allistaire to have another chance at life. It is her T-cells that have been genetically modified and will be sent rushing through Allistaire’s tubies into her flesh. Thank you to this unnamed woman, thank you. We long to meet you in person one day. We are so indebted to you. If YOU would like the opportunity to save someone’s life, you can sign up at Be The Match.Org to be on the bone marrow registry.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18

Aug26

APPROVED!!!!!

Posted on August 26, 2015 by Conglomeration of Joy

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Four years ago we could never have imagined this little girl connected to genetically modified T-cells but I just got word that the IRB did approve her to move forward with the WT1 trial and get her T-cells!!!! I have no more info at this point but know that they are trying to plan it for next week though this Friday is also a slim possibility. Her ANC today was 832. Platelets are still low requiring a transfusion last Saturday. Thank you for all of your encouragement and prayers!

Thank you God for another open door, a massive thick, seemingly immovable door!

Aug21

Denial

Posted on August 21, 2015 by Conglomeration of Joy

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My eyes blink and blink, looking around, trying to clear my vision. Chest compressed and struggling for breath, the wind knocked out, a severe blow. No words form on my tongue, just desperate to get air. When I walked up to the door I expected it to open and be welcomed in, feeling a bit giddy. The next moment the fist connects with my jaw, so hard and fast I hardly feel pain. I find myself crumbled on the floor, all the strength drained from my legs, hands shaky. It’s taking a while to even want to get up, to even test my ability to rise.

Everything was set, down to the small details, two beds in the room or a crib and a bed? We were to go to SCCA (Seattle Cancer Care Alliance) Thursday morning at 8am. Dr. Wolfrey, one of the BMT (Bone Marrow Transplant) docs would examine Allistaire and labs would be drawn as outlined by the trial protocol. We would then return to Seattle Children’s for Allistaire’s scheduled dose of IV anti fungal. Around noon, the research study nurse would arrive with Allistaire’s genetically modified T-cells that took six weeks to create. By 1pm the two-hour infusion would begin and she would be monitored very closely. Once the infusion was complete, we would transfer across the hall to the CRC (Clinical Research Center) where we would stay overnight until 8am when Dr. Wolfrey would again examine her and determine if she could be discharged.

Many times Wednesday morning, as we spent a few hours in clinic getting her anti fungal infusion, various staff popped by to share the excitement for the T-cells scheduled the next day. Congratulations all around. Nurses near and dear to us, each saying they wish they could be our nurse on Thursday to give the infusion. I saw Dr. Cooper in the hall, knowing he probably didn’t want me harassing him to find out if he’d heard the decision from the IRB (Internal Review Board), but I couldn’t help myself. N0 he hadn’t heard, but they won’t say No he said. Mid-morning the research study nurse called to say that the IRB would meet that afternoon and she would call me probably after hours with their decision. So nerve-wracking. I’ve come to trust nothing until it actually happens, so very many times we have been disappointed and forced to cancel plans. But still, it all sounded like a simple formality.

Everything was moving forward. I comforted myself with the reminders that Allistaire’s situation was vastly improved since Dr. Egan first proposed going to the IRB to ask for exceptions. Her ileus had fully resolved and as of Monday, she was completely off TPN (IV nutrition). Her echocardiogram on Friday produced an ejection fraction of 41, one point over the needed threshold. That meant the two big “Grade 3 Toxicities,” were gone, irrelevant. Really the only remaining issue is her lack of count recovery. The protocol dictates that if there is no leukemia present (specifically in the marrow) then the patient must have an ANC of 1,000 and platelet count of 50. If there is leukemia present, then the thresholds are an ANC of 500 and platelet count of 30. A marrow that has leukemia present is less able to produce the healthy blood cells. In Allistaire’s case, both the Flow Cytometry and FISH tests showed no evidence of leukemia in her marrow. She still has leukemia as evidenced by her remaining chloromas but nothing shows up in her marrow. Allistaire’s cancer cells show characteristics of both M5 and M7 AML. M5 is known to be associated with chloromas and M7 is “associated with marrow fibrosis due to megakaryoblast secretion of fibrogenic cytokines.” What this means is that the landscape of Allistaire’s marrow has been permanently changed due to secretions by cancer cells that have created a web like structure in her marrow which in turn makes it harder for the blood cells of her marrow to recover. Not only has her marrow been long battered by the effects of so much chemo (21 rounds of chemo each containing 2-4 different types of chemo), but her cancer cells themselves leave behind their wretched imprint. So…the point is, Allistaire’s marrow is very slow to recover and the time that it takes to reach these count thresholds required by the trial also means a whole lot of time for her cancer cells in the rest of her body to continue to divide and increase.

We are in a hard place. Giving Allistaire’s marrow time to recover counts so she can qualify for the trial allows the rest of her disease lots of opportunity to increase which makes this T-cell therapy far less effective. Any future chemo that is intense enough to keep her cancer at bay will also suppress her counts. Less intense chemo won’t suppress her counts as much but more than likely will not stop her cancer. We are in this wretched cycle that seems to repeat endlessly and to have no way out.

As the day turned toward evening, the waiting intensified like a very taut thread. I called out to God, reminding Him that I am made of but dust, I am a vapor, a mist, a spider web, a flower in the field soon to fade. I called out for mercy, mercy Lord.

A little after 6pm, Dr. Egan called. “I am so sorry Jai.” I tried to listen. I tried to hear what he was saying. Like garbled words I could not make sense of what I was being told. The IRB denied the request for exemptions. “What did you ask for?” I pleaded. The IRB just gave an answer of, “No,” for now and will provide a letter of explanation on Monday. Did Dr. Egan ask for too much? Were his requests too broad? It seemed from what I heard that he asked for exceptions that would apply to all patients going forward. Who are these folks who make up the IRB? I want them to see Allistaire’s face. I want them to see her dance, hear her laugh. Yes, yes I know that all these numbers about her matter, they too are truth, real, but they are not the whole story, the full picture. Look at MY CHILD!!! But you see, this is the hard part about cancer research. This is research, this is not a standard therapy. This is an experiment in its truest form. The first commitment of a doctor is to “do no harm.” Harm? Wow does this feel subjective! I mean I’m pretty sure death is harm. Chemo is harm. Surgery is harm. Radiation is harm. Harm. Harm. Everywhere harm. But wouldn’t I cry out for it again and again if I thought harm might make a way through for life?

But you know, I do understand. I do respect this mandate to do no harm. I respect that it causes a doctor, a researcher to pause, to carefully consider. The hard thing is we’re working in the world of unknowns – we don’t know if these T-cells will work, we don’t know what harm they may also cause. It is ever so important that this trial be carefully designed and carried out. The whole point of a Phase I trial is to determine if it is safe – if there aren’t toxicities that result from this therapy that negate its potential value. Once it is determined to be safe with relatively low risk, the next phase of research looks at efficacy. There was actually a T-cell trial that used a different type of virus to alter the DNA within the T-cell that ended up causing ALL (Acute Lymphoblastic Leukemia). That trial was shut down because folks trying to have their cancer cured actually got cancer directly from the experimental therapy. It is not reasonable to ask or expect the IRB to sweep aside all concern because we are desperate for Allistaire. While I hope they will consider her as an individual I also understand that the point of this trial is for the benefit of anyone with relapsed AML, child or adult. I do not want to stand in the way of carefully conducted science. If you read the fabulous book, The Emperor of All Maladies, you will learn how the “radical masectomy,” became the standard treatment for breast cancer between about 1895 and the mid 1970’s, ravaging and brutalizing women’s bodies it turns out without benefit. It took a serious clinical trial to show that theories about how cancer metastasized that had been taken for granted as truth, were in fact false, only after thousands of women endured horrific, disfiguring surgeries.

I should also mention, Dr. Cooper was fairly awed that Fred Hutch is even willing to open this trial to children. It is precisely because Allistaire is a child, the very first child in fact, to ever attempt this therapy that the IRB wants to tread with such great caution. “Because no one wants to see a kid die?” I ask Dr. Cooper. Basically that’s it. Everyone has a much harder time seeing a kid hurt, even die, harder than seeing a 75-year-old person with AML and has had the chance to live. The thing is, if kids die, a trial is more likely to be shut down. This is a problem – for everyone. Far fewer kids get cancer than adults so it is not financially lucrative for a pharmaceutical company to trial a drug that might work against a childhood cancer until it’s been proven to work in an adult cancer. Adult cancers are what bring in the money. Kids are a financial liability. The irony is that the bodies of children have a far better shot at enduring the toxicities of a drug that would kill an adult. Here is a statistic worth pondering: “The average age of a cancer diagnosis for an adult is 67 years old, equating to an average of 15 years of life lost to cancer in contrast to the average age of a cancer diagnosis for a child which is 6 years old, equating to an average 71 years of life lost to cancer.” The National Cancer Institute only allots 4% of its budget to pediatric cancer research and it is not a money-maker for pharmaceutical companies. Who’s going to pave a way forward for kids with cancer? I am so thankful to Fred Hutch for being working so hard to open this door for kids with AML. I am also thankful for organizations like The Ben Towne Foundation, St. Baldrick’s and Cure Search that raise funds specifically to accelerate cures for childhood cancers.

This denial has been a severe blow to my heart. Having everything set up with the expectation that we would move forward with the T-cell infusion, only to be told No at the last moment has been extremely emotionally shocking. I have felt quiet these last few days, not really interested in hearing what people have to say or saying much myself. While it would be nice to believe, as some do, that because God has brought Allistaire so far, He will continue to open the door for her, I don’t hold to that idea. I fully believe He is able, gosh I really believe that guy, God, if He really is God, it’s simply not hard for Him to make a way forward for Allistaire. I mean, I’m pretty sure if he designed atoms and stars and the DNA double-helix and orangutans and sunsets glinting off snowy peaks and oceans deep teeming with wild sea life – I know He is able. He is able!!! The thing is I equally believe with my whole heart, with every fiber of my being that He is other, He is infinite and my finite mind cannot begin to fathom what He is up to, because one thing I know, is that this whole crazy seeming mess is about more than Allistaire and her one little precious life. This is about more than me loving my daughter desperately and wanting to know her all the rest of my life. I’m telling you, it had better be about more, because there are times when death seems like grace, an end to this struggle.

What’s rocked me is seeing how God resolved her ileus just in time and increased her heart function to just enough to qualify for the trial. It seemed He was opening doors. And they are open doors still. But then wow, the door slammed right in our face, a very hard blow. A friend told me she wants to study God’s promises. This is a crucial question – what does God actually promise? What are the strongholds which God declares I can grab onto? It is imperative that I reach for what will really hold. I texted my Seattle pastor this morning saying I need help. I feel I am in a storm which threatens to tear me limb from limb. Later I saw that back home in Bozeman, my pastor Bryan will be teaching on the book of Job. He says, “The book of Job is a storm. At the beginning of the story, storms strike Job’s house. At the end of the story, God himself speaks out of the storm. In between, chaos and darkness reign.” Who am I to liken myself to the righteous man Job? What I want, truly, more than anything is that God would delight to use my life to illuminate His life-giving beauty. But oh man, do you know what happened to His Son? God the Father allowed His son to be crucified for the salvation of the world, that all might receive eternal life through Christ. And Jesus yielded to the Father, “for the joy set before Him.” I am far, far too frail and finite to endure. I am in desperate need of my Father to hold me up. Hold me up Lord.

From my youth, my brain has been a brain that never ceases roving, roving, searching. In 10th grade when I took computer science, I would go to sleep contemplating algorithms, sometimes waking with the solution. It’s not always handy. Often I wish I could shut it off. My mind has circled high and low, over and over this predicament, inquiring of every angle, searching for a crack, a path through, like water through rock. Thankfully Allistaire has one seriously awesome doctor and one that treats me with respect, who allows and invites me to be a part of this problem solving endeavor. Both Thursday morning and this morning, Dr. Cooper and I were able to discuss the situation, what is known and unknown, what sort of “strategerie,” might be best. As of this morning Dr. Cooper was able to hear from Dr. Egan who had in turn been able to talk to one of the members of the IRB. This person recommended Dr. Egan resubmit his request. It seems that the IRB’s perception of the requests were for quite wide sweeping exceptions that would pretty substantially change the protocol and might even require FDA approval. I know that he asked for exceptions regarding Grade 3 Toxicities in general. At this point, to our best knowledge, Allistaire does not have any issues that count as Grade 3 Toxicities which would negate the need to even bring up anything related to Grade 3 Toxicities. Really she just has low blood counts. Tomorrow she will get another set of labs and I am so hoping her ANC and platelets might be on the rise. Dr. Egan will resubmit today or Monday, though the IRB will not meet again until next Wednesday. This may be our last shot for Allistaire to get her T-cells.

I will not shake my fist at God. I don’t understand. His plans baffle me. Though I do not see, I will bank all my heart on Him. I will thank Him for all His bounty. I will put my hope in His redeeming ways, in the mystery of the ugly-beautiful. I lay flat at His feet and ask simply, Father, do not abandon me. Be faithful to your promises. May your mercies be new every morning.

“The wrinkled man in the wheelchair with the legs wrapped, the girl with her face punctured deep with the teeth marks of a dog, the mess of the world, and I see – this, all this, is what the French call d’un beau affreux, what the Germans call hubsch-hasslich – the ugly-beautiful. That which is perceived as ugly transfigures into beautiful. What the postimpressionist painter Paul Gauguin expressed as ‘Le laid peut etre beau’ – The ugly can be beautiful. The dark can give birth to life; suffering can deliver grace.” Ann Voskamp, One Thousand Gifts: A Dare to Live Fully Right Where You Are

Aug14

Long Shot

Posted on August 14, 2015 by Conglomeration of Joy

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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!

Aug8

Miserable Mess

Posted on August 8, 2015 by Conglomeration of Joy

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“Today is the worst day of my life,” Allistaire said to my mom yesterday.

She hardly smiles. I try and try and maybe occasionally there is a flicker. Mostly she just lays in bed, curled on her side, flat expression or grimaces of pain. The hurt intensifies, the moans quicken. I glance at the heart monitor and watch her heart rate climb, climb. 150, 160, up and up. Sleeping these days it’s in the 140s. Sometimes it’ll dip down to 115. A normal resting rate used to be in the 80’s or 90’s at night, about 105 in the day. Her heart is working so hard. A flurry of intensity.

“I’m gonna throw up!!!” she screams and I tell her, “NO, NO, you mustn’t! You HAVE to keep those meds down. Your heart is hurting and needs these meds!” She struggles to hold on, she pushes through and manages a few more minutes until her whole body is taken over by the anguished effort to empty her stomach. Face contorted with neck thrown back, back arched and bottom jaw stretched as far down as it can go, mouth wide as the constriction of her stomach demands to eject its contents. Retching is really the word for it. Great green gushes of dark bile arch into the air and down into the basin. Over and over her body is racked with contractions. When at last she is spent and there seems to be nothing left, I ask her if she feels better. “No, no, I feel worse,” she says with sad haggard voice.

I make her get up and walk. “Even if you cry the entire time,” I tell her, “you will walk this lap around the Unit.” She shuffles slowly along, one hand gripping Doggie and the other in mine. Small warm. Oh how I love her. There are greetings as we move through the halls. Cheers. “You can do it Allistaire!” Looks of love and compassion. So many nurses and CNA’s that have loved us for so long, have watched Allistaire over the years, struggle and victory, defeat and perseverance. “My tummy hurts,” she cries. She whimpers and occasionally yells out on our loop, at last she collapses back in bed.

Her heart rate, oh man. We’ve got to get this thing under control. Her little heart is working so hard. Her BNP (measure of heart distress) was 1,700 on Sunday. I haven’t seen numbers like that in months and months. Her BNP a week ago was 360 (normal is 0-90). She had an echocardiogram and her ejection fraction has dropped from 36 two weeks ago to 22. We are all hoping desperately that this is a temporary hit and not a long term regression.

Late on Thursday evening Allistaire and I arrived at my parents house with the plan to stay the night and get up early the next morning to pick Solveig up from camp. I so wanted to see her little eager face, to have her tell me all about her week. I wanted to see the transformation from the scared, nervous girl I dropped off on Sunday to the one that would be beaming with joy. We had been in the house no more than 5 minutes when I felt Allistaire’s face as she nuzzled up against my leg, having returned from the other room ready to change her attitude. Oh my gosh she is so warm. The internal debate, the desperate desire to ignore what I sensed flooded me with heat but my mind sternly declared, “Take her temperature, just do it, you must. It doesn’t matter that you just drove all the way here and may have to turn right back around. Focus. Take her temperature.” Solveig’s sweet face lingered in my mind. I turned to Allistaire. 102.4 A fever. Oh crap. We’ve got to go, we’ve got to go. Allistaire has no ANC, she has no defense. Something is brewing in her and things can move fast. 103.5 We were out the door and back on the road, speeding through the night. I talked to the Hem/Onc Fellow on call. I want blood cultures and antibiotics ready for when we get there. I talked to the ER. I don’t want to have to wait. I drove 70 mph the whole way, rehearsing in my mind what I’d say to the officer if I was pulled over. Allistaire cried and cried, so sad to not see Sissy. My jaw was clamped closed, hands gripped on the steering wheel, intent, scanning the night. My whole heart screamed out into that darkness, “But I have TWO daughters!”

By 3:30am on Friday morning, we were at last settled into our room on the Cancer Unit. Blood cultures had long ago been drawn and antibiotics were nearly ready to go in for the second time. All day Friday she fought fevers. At 13.5 hours something started to grow in the blood cultures – bacteria described as gram positive cocci and chains. Another big gun antibiotic was added to cover more bad bugs – she was now on Flagyl, Cefepime, and Linezolid. She has VRE (Vancomycin Resistant Enterococci) which means that if this bacterial infection was Enterococci, Vancomycin would not be enough to stop it, we need something bigger, broader. With another day’s growth the villain would be revealed as Streptococcus Viridans.

As Saturday began her fevers waned but a new woe broke into the peace of the morning with sharp painful screams. She was inconsolable. What could be going on? An X-ray was ordered to look for overt blockage in her gut. Nothing could be seen. A CT with contrast was ordered. For three hours I tried to get Allistaire to drink the contrast, but over and over she would throw it up. I was desperate. We MUST get the contrast in or the doctors can’t see what’s going on inside. Finally, we just decided to go for it and hope for the best, a sufficient image. Thank the Lord there was no typhlitus but there in the loops of her intestines were great black spaces, gas trapped and a gut that would not move, that had altogether stopped. When we got back from the CT she threw up a huge amount of contrast. I couldn’t figure out how she could throw up so much, how so much could still be in her stomach when she had been drinking it over the course of hours. Well now we knew, for some unknown reason, Allistaire has an ileus. There is no physical blockage but there is a mechanical one, her gut won’t move and so that gas is just stuck in there and whatever she puts into her stomach just sits there until it is forced upward. She was immediately made NPO (Nothing Per Oral – meaning she can’t eat or drink). After much conversation and a consult with the GI docs, it was determined that she would be allowed a few occasional sips of water and to take her oral cardiac meds that cannot be converted to IV.

This ileus is a mystery. We don’t know what has caused it. Regardless, it is incredibly painful for Allistaire and she is now on frequent pain meds and anti-nausea meds. Despite being NPO, her stomach continues to make acid and therefore regularly fills and requires her to retch it all up. The GI doctors recommend her regularly curl up with her knees tucked under her stomach, her little bottom in the air, in hopes that the gas will slowly move up and out. We now have an activity plan and walk around the unit hoping the movement will help her gut to get moving. The next step will be to add a medication that can help wake up the gut by blocking certain receptors. A third step would be to have a NG (Nasogastric) tube placed to suction out the contents of her stomach and giver her relief. As you can imagine, Allistaire is terrified of this prospect. The reality is that this will simply take time to resolve, there’s really much we can do directly to solve this.

Not only does the ileus create immense pain for Allistaire which raises her heart rate but it also necessitates that she be on TPN (Total Parenteral Nutrition) which is essentially getting all of your food by IV since her gut is not functioning. Being on TPN is viewed as a “Grade 3 Toxicity,” which in turn bars Allistaire from being eligible for the T-cell trial. While we assume the ileus will resolve and she will have no problem eventually returning to eating normally, while on TPN she is disqualified from participating in the T-cell trial. Because this means that the possibility of getting the T-cells is firmly put on hold until her gut starts to function again, the cardiac anesthesiologist did not feel it worth the risk for her to be sedated today (Tuesday) for the planned PET/CT, brain MRI and bone marrow aspirate used to determine the state of her disease. The fact that Allistaire is throwing up would necessitate he put in a breathing tube during the sedation so that she won’t aspirate. A breathing tube increases the risks of the procedures and he was considering arranging an ICU backup plan. All her procedures have been cancelled for now and will hopefully happen the beginning of next week in hopes that with more time her heart function can improve and perhaps so will the ileus, thus reducing her vomiting and that all in all sedation would be less risky at that time.

All of this is incredibly disappointing and scary. Since Allistaire’s gut is not functioning, everything must be converted into IV form which means a ton of fluids are being pumped into Allistaire’s veins which in turn creates much more work for Allistaire’s heart. Normally all her food and liquid and medicines would go into her gut, not at all adding work to her heart. This is a vicious cycle. She’s in crazy pain so we give her pain meds. The pain meds, even the non-narcotic ones, act to keep her gut suppressed, but her pain causes higher heart rates. Until the ileus resolves, she is taking in a ton of fluids (even though this is being tightly monitored, restricted and managed by Lasix) which is also hard on her heart. You can’t use Lasix too much to get her to pee off fluid because her kidney’s don’t like it. Already today her BUN is 42. I want to throw up my hands. Today her BNP was 2,600. I know it is nearly doubled simply because she had a transfusion of red blood yesterday. Man, we need her ANC to come up. We need her marrow to recover so she doesn’t keep needing transfusion. Everywhere I turn there are things we desperately need to look different if she’s going to have a shot at making it.

Dr. Cooper reminds me that this is exactly the sort of scenario the doctors have described to me that can happen with chemo that suppresses her counts to zero. The only chemo that really has a shot at taking down her disease also wipes out her white blood cells which defend her against all sorts of bacteria and viruses. To get an infection almost always means the necessity to respond with an increase in IV fluids of various types. Her heart just limits everything that can be done. But here’s how I see it: we know the outcome if Allistaire is not given chemo of any significant strength – her disease will progress and we won’t be able to stop it. She will die. The alternative is we give her chemo that may stop her disease while opening her up to awful infection possibilities but that she may be able to make it through. One choice leads to only one end – death. The other has the chance to work and just maybe infections won’t be the death of her. Maybe just maybe there’ll be a way through for her.

Statistics. Oh what deafening power they seem to possess. Allistaire probably won’t make it. The likelihood is that she will die. Even from the time she was diagnosed she only had about a 60% chance. Relapse wipes that percentage down to nearly nothing. Almost exactly two years ago, when disease was found after transplant, the doctor told me Allistaire had a 5% chance of survival and probably wouldn’t live 6 months. Okay. So a 95% chance she’ll die. But she didn’t die in those 6 months and two years later she is still here fighting. Somebody has to be the 5% is what I declare to myself over and over. Allistaire just may be in that 5%, who knows? And you know what? Statistics say Allistaire should never have begun this crazy path. Her type of AML, M5, only constitutes 2.5% of all children diagnosed with leukemia. Only .8 to 1.1 in a million children are diagnosed with M5 AML each year. She is literally one in a million. So while she may only have the slightest chance of survival, well chance, chance really has nothing to do with it. Chance has no power. Chance is simply an observation of what most often occurs.

I call out to the Lord over and over because I believe it is He that holds her life. He is the one to determine her path. It is not chance or probability or statistics that determine the outcome of this brutal road, but the Living God, my Father. And it is a peculiar sort of wretchedness to know that the one I love, the One who declares to love me, the One who is able to sustain her life…He may not. He may allow death to come and swallow my sweet child as He has so many other children. On the surface this seems to be an ultimate hypocrisy, and ultimate deceit – not love but horrific cruelty, betrayal. But He calls me to His Word – to fix my eyes on Him and to be reminded down into the core of me, that He is God, GOD!! It is His to give life and bring it to an end. It is His to determine the course of my life, the course of Allistaire’s. He reminds me to separate an audacious 21st Century American view that I have some sort of right to a healthy 80 years on this planet from what He declares this life to be about. Because it is not about marking off the bullet points of beautiful childhood, rigorous college education, fulfilling meaningful successful career that gets me enough money to have a nice house and vacations for myself and my perfectly attractive, wonderful spouse and children followed by a leisurely retirement and at long last a pain-free dignified death surrounded by everyone who has loved me and honors my amazing life. No, really God makes a much simpler claim to what this life is about. He says this life is about coming to see that HE is the source of life, true, eternal, abundant life through the death and life of His son Jesus Christ. And if you have come to see Jesus as the only source of life, then go, go, live your life in such a way as to draw the attention of others to see His resplendent beauty – Christ – not a path to life but Christ who IS life itself. Christ is not my guide. He is not my sherpa hauling water and nourishment for me as I walk through this life. Christ Himself is the very way, He Himself is the water, the food, the healing.

So who am I to say what my life should look like? Who am I to say how many days I ought to be allotted or what circumstances should fill them? Over these long years the Lord has worn me down, cut here and there, gouged out, cauterised. It has hurt. At times it has been agonizing. There is still much work to be done on this proud, self-sufficient, trembling heart. But I can say, that somehow, mysteriously, I am coming more and more, millimeter by millimeter to trust Him more, to rest, truly rest in Him. Honestly, I really don’t think Allistaire will make it out of this alive. I am utterly confident that God can make a way through for her. He has made a way through many times when it felt like all the walls were crashing down on us. He can do it again. He may and that would be glorious and oh how I would rejoice and rejoice and thank Him for all the days that He has carried her so far.

But there is a way in which I feel like I am just living out days that must come. We cannot say we are done because she is far to alive. As long as there is an open door before us and Allistaire still seems to have vitality, we will walk forward. But somehow it feels that we are coming down to the end of things. I guess the oddly beautiful thing though, is I’ve stopped caring so much about what will be. I sipped warm foamy latte yesterday and realized that I have been going to that coffee shop and drinking that coffee all through fall into winter into spring and now summer. Fall is coming. I cannot begin to imagine Fall. There is no end in sight and what I mean is, I am no longer fixing my gaze on the end. At long last, I am coming more and more to dwell in this present. To feel the incomprehensible soft wonder of peach fuzz along the curve of her forehead down across her little nose. I am soaking up the sensation of her little bottom tucked up against my stomach as we lay in the bed together, my fingers running through her flaxen hair. I rest my cheek on her cheek. I listen intently to her voice. With gentleness I change her diaper. With sternness I demand she take her meds. I live out each task and detail. I want to fully inhabit not just these days but all the moments and actions that accumulate to eventually be gathered up into the satchel marked “day.” I look over labs, all those little numbers painting a picture of her flesh, telling a story of the tug of war of life and death, sickness and health. The numbers, how they have for so long knocked me off my feet, casting dark shadows over so many days. Their power is slowly draining away. I can control so little. The doctors have so very little power. We are all just doing our best, but really, it’s out of our hands. I have not relaxed my guard over her, I will not let up in my fervor to examine every last angle, but no longer do I grip her with white knuckles desperate and crazed. She is my sweet little love and I will do my best to care for her every moment and every day given to me.

Yesterday evening I stood looking out across Lake Union toward the beautiful Seattle skyline, the sun having already set, leaving mellow pinks blending with the last of the day’s blue. Behind me cheerful, high energy music played and hundreds of people gathered. Doug, the camera guy, said it best – “beauty and affliction.” There’s just so much of that. How strange that the thread weaving all these people together, people dancing, drinking beer and chatting – we are all bound together by sorrow, by loss. Last night was the big Obliteride kick-off party at Gasworks Park. I had the opportunity to stand up for a few minutes and relay a bit of Allistaire’s story and the incredible need to advance cancer research. I dwell within just one story among thousands and thousands, millions really, of stories about how cancer has stolen away those beloved, cherished, bright. Today I have the joy of having some fun team time with the Baldy Tops. Tomorrow we will put into action all that we have prepared for. We will swing our legs up and over that frame, hoist ourselves onto the seat, clip into pedals and at long last flex…will our legs muscles to contract, propelling us forward, down the route.

Thank you ever so much to each of you who have given sacrificially of your own money, money you could have spent a thousand other ways, but chose to give to directly enable the furthering of cancer research. I’ve said it before, but I’ll say it again. It all seems so abstract, science, experiments – weird stuff. But it’s a real man like Stan Riddell who is an immunology expert at Fred Hutch. I saw him standing on the outskirts of the party at Obliteride last night. I introduced myself. I looked into his eyes and told him thank you, thank you. He went on to tell me that he is the doctor that trained Dr. Bleakley, Dr. Gardner, Dr. Jensen. Dr. Bleakley is our amazing transplant doctor who designed the naive T-cell reducing transplant that is attempting to minimize the awful impact of GVHD as a complication of transplant; this was the transplant we had so hoped Allistaire would be able to have. Well, you know Dr. Gardner as one of our beloved smarty pants doctors who has cared for Allistaire so long. What you may not know is that along, with Dr. Jensen who is the lead researcher at Seattle Children’s Cancer Research specializing in pediatric cancer research, she heads up the amazing T-cell trials at Children’s for the more common type of childhood leukemia, ALL. I met Stan’s family – his wife and two daughters. I told them thank you for the sacrifices that they have had to make to have a father who would spend so much time at work, in the lab. Your money goes to real people, doing real amazing work. When we fund cancer research we are putting more tools and time into the hands of these brilliant minds who work feverishly to understand the staggering complexity of cancer. You free them up from having to spend so much time scrambling to cobble together enough money for the next trial. You help them design and pay for that crazy cool piece of machinery that doesn’t test 10 samples of DNA but a thousand. You help pay for the lab assistant who will run the experiment and enter the data. All of this enables research to happen at a greater pace, speeding up the discoveries that lead to cures. This is where your money goes. Perhaps it still seems abstract, like just writing a check because you love Allistaire, your heart hurts for our family and you just want to do something, anything to help. Well, for that I sincerely thank you, but just know…know that not only do we feel loved and supported by your act of giving, but it is making a real and tangible impact, not just for Allistaire but for many children, many adults. Perhaps one day you will be the one to benefit from advances in cancer research.

Since I began this post many days ago, Allistaire’s ANC has popped up to nearly 300. While Friday’s echo still showed an ejection fraction of 22, her heart rates are drastically lower and nearly normal. The cardiologists have added two more medications to try to improve her heart function – Isosorbide dinitrate and Hydralazine. There is no resolution of the ileus yet and she remains in pain but her cheeriness has improved and she’s actually joked around a bit. Her legs have gotten stronger again and we’ve doubled the distance of each walk. A PET/CT, brain MRI and bone marrow are all tentatively scheduled for Monday.

For Obliteride pictures and updates check out the Obliteride Facebook page and/or the main Obliteride website.