Amazed by the science

We interrupt this blog to discuss something I have been wanting to take the time to put together for awhile. This post has been sitting incomplete for over two months already. Maybe it's time to pull it out of the drafts folder.

So here goes. All of the treatments Daniel is on, what they are, and why they are the ones chosen for his particular cancer. 

We see "miracle cures for cancer" touted everywhere. And it is easy to understand why. Why wouldn't we want to hope and believe that answers are available, free, and easy? It is so alluring to believe that maybe healing can be found in something simple without walking the fine line of a drug threatening to kill the body the cancer lives in, in order to kill the cancer. Drink this juice. Flush this organic coffee...ahem...where the sun don't shine. Eat two pounds of strawberries a day. Cannabis oil. Turmeric. Vitamin C. Essential oils. 

The more I find out about how cancer works, the more I realize what a truly complex disease this is, and how impossible a one-size-fits-all approach would be. As well as how oversimplified so many of the common things we hear about cancer are, especially in this age when everybody with a wifi connection is a health expert. Things like "sugar feeds cancer", "cancer can't grow in an alkaline body", "a healthy immune system will protect you from/cure cancer", and "natural killer cells!" If only it were that simple. It does seem like it should be when one hears about the latest triumph of an overhauled diet, a concentrated plant compound, a new way to help the body heal itself. Sure, we can limit our exposure to things that create damage in our bodies. And we can give our bodies the best possible building blocks to support healthy cell replication. Just like we can cut down our chances of getting a flat tire by not driving through a construction site. But once we remove all the things that will likely cause a tire puncture, we aren't guaranteed we won't still go out one morning to drive to work, and find a flat. Because sometimes, tires leak and cells just don't quite replicate like they should. Always have, probably always will. Genetics. Random errors in the millions/billions of complicated DNA replications that occur every day.  

I came across an excellent article the other day that explains how cancer is not a modern disease, why some things may work sometimes, but why nothing will work every time. How not only is every body different, but so is every cancer, how cancer is becoming less of a death sentence the more we continue to unravel the mysteries of DNA, and what sort of therapies are on the horizon: http://gawker.com/green-juice-will-not-cure-your-cancer-1705579750

The thing is, some of these "miracle cures" do work, to a certain degree and in certain applications. Maybe even well enough to catch the interest of researchers. Many things can kill cancer, but not many can do so effectively enough to bet Daniel's life on it. But the thing that has most blown my mind throughout this experience so far is the sheer amount of research that has gone into the creation and use of the drugs we do have, which have made cancer (albeit slightly) less terrifying than it ever was before. Who figures these things out? Who even knows to look at these obscure mechanisms and functions within cells, and finds ways to change the way they behave? Who figures out the millions of tiny factors that go into making our bodies tick along on a cellular level? Furthermore, who, once they start to understand the way the body works and the medicines we take to help it heal, can say that an entire field of study is suppressing emerging discoveries that might work in order to keep using the ones that don't? If it (whatever It is) works as well as the internet says it does, the medical field generally wastes no time co-opting it, isolates whatever it is that makes it so effective, synthesizes or finds a way to mass produce it, and makes a craptillion bucks.

Plants, they say. Nature has given us everything we need to heal ourselves. Traditional cures, folk remedies. Go back to ancient times. Essential oils and plant compounds. And this is sometimes true. Instead of ignoring folk cures, modern medicine has taken a look at the ones that produce actual, major results, and has given us, for just one example, Vincristine. Vincristine is a plant alkaloid, extracted from the leaves of the Catharanthus Roseus, or rosy periwinkle. In the '50's, while studying this plant because if it's tradition of being a healing plant, and having discovered it contained a very high number of plant alkaloids, researchers found one of these alkaloids caused mice with leukemia to live longer. This is because it interferes with the function of microtubules, which are responsible for moving nutrients through cells, so the cell cannot divide properly (or, in the case of cancer, improperly). Fast forward, it was approved for use in humans. Because it was very effective. This is an example of something that is free to everyone, a common plant, that "big pharma" had no interest in suppressing for profit but instead studied to see what made it effective, isolated the active compounds, and now sells for far more than they would have ever made selling drugs that do not work as well. It causes a little nerve weirdness, I believe jaw pain, tingling and numbness in the fingers and toes, and hair loss, which for Daniel, was not complete loss, just a slow thinning. Daniel has had many Vincristine infusions, and will have many more in the next three years.

Granted, I am sure I am doing a lot of oversimplification myself, here. My murky understanding of these things barely scratches the surface. I know only enough to know I don't even know how much I don't know. (Y'know?) Again, with questioning my life's choices and not getting a degree in a scientific field that would better equip me to understand these things, because I really do want to understand. 

Nutrition. Well...that's complicated. In the late '40's, it was observed that mice with leukemia given folic acid did much worse, experiencing much more rapid deterioration. Apparently folic acid fed the cancer exceptionally well. So off to the lab, where they synthesized a substance, methotrexate, almost identical to folic acid. Almost. So close our cells do not know the difference, so the uptake of this substance, which does not behave like folic acid, crowds out the uptake of folic acid. And sure enough, without folic acid feeding them, the cancer cells die. By the '50's, methotrexate was being used to treat cancer in humans. Of course, blocking folic acid uptake for too long is problematic for overall health. So when it is given in high doses, after allowing it to work for twenty four hours, another drug is administered. Leukovorin, a form of folic acid, again feeds the cells and stops the effects of methotrexate in the body.

A lot of chemotherapy treatments are based on limiting needed compounds to cells at certain times in their cycles using substances that were formulated to be almost identical to a substance in food or created by the body. So close to identical the body doesn't know the difference, but just different enough they are unable to perform the same function, the absence of which starves the cell at certain times in it's cycle, screwing with the cell's ability to replicate. Nucleic acids are substances within cells that allow them to transfer their genetic information, including the information telling them how to replicate and when to stop replicating, from one generation to the next. Purines and pyrimidines are two of the building blocks of these nucleic acids. Cytarabine, the subcutaneous shots we've been giving Daniel at home, is just similar enough to pyrimidine that the cell tries in vain to use it instead of pyrimidine to build these nucleic acids. And Mercaptopurine does the same, mimicking purine to gain access to the cell, then damaging it from the inside out, thus preventing the cell from passing on it's instructions to divide too rapidly on to the next generation. Without this misinformation, the next generation of cells returns to it's standard rate of replication. Thioguanine, an upcoming oral chemo, does the same with guanine, another compound essential to cell replication.  

I think we've talked about bacteria-derived asparaginase, the way it works in the body to break down the amino acid asparagine, which healthy cells make for themselves, but cancerous cells have to draw in from the body in order to survive. And you'll remember Daniel's swelling reaction to it, and our resulting switch from E-coli derived PEG (polyethylene glycol) Asparaginase to Erwinia Chrysanthemi derived asparaginase. In 1953, it was observed that lymphomas regressed when treated with guinea pig serum- literally what it sounds like. Serum from the blood of guinea pigs. Apparently that's a thing. So they took a closer look and determined it was not the actual serum suppressing the cancer, but an enzyme in it called asparaginase. So they began looking at asparaginase from other sources, comparing the effectiveness, and determined the most effective asparaginase enzyme comes from two bacterias- E.coli and Erwinia chrysanthemi. This is an example of research weeding out treatment that is slightly less effective in favor of treatment that is more effective. So far, Daniel has had three doses of asparaginase. Well, two and a half. The third dose was that $209,000 series of shots. Which we have two more rounds of.

In the 1950s, an Italian research company began looking for anticancer compounds in soil microbes. A previously unknown strain of bacteria, Streptomyces peucetius, which produced a red pigment, was discovered near a 13th century castle, the Castel del Monte. The active compound in the bacteria was isolated and used to create an antibiotic that was effective against tumors in mice. The two research teams who discovered it called it Daunorubicin, a combination of "Dauni", an ancient tribe that once lived in the area, and "rubis", French for "ruby", after it's red color. In the 60's, the trials moved from mice to humans with leukemia and lymphoma. By the late 60's, it became apparent the drug, while effective, could also cause fatal damage to the heart. With later changes, intentional mutations to the compound, a different red colored antibiotic was created and named Adriamycin, which was later renamed doxorubicin. Doxorubicin has even better anti cancer properties than Daunorubicin, but unfortunately the heart toxicity was not changed by the tweak. This is why Daniel recieved an echocardiogram at the beginning of his treatment and will be monitored while receiving Doxorubicin. No other drug has the potential to damage his heart like this one. It works by stopping the movement of an enzyme, topoisomerase II, through the cells it comes into contact with. Without this enzyme, supercoils in DNA cannot relax to begin replication, nor can they reseal, so no replication of those cells means no errors in replication get passed on to the next generation. Or something. I read somewhere it has also been referred to as "Red Devil" or "Red Death" because of it's color and toxicity level. This is one still looming, one we have not recieved yet. I believe this is one Grandma Sandi also got. Or was it Grandpa Jim? I can't remember anymore. I only know it sounds familiar.

The last drug in the arsenal that's being used to treat Daniel's cancer is cyclophosphamide. I am admittedly very foggy on the details of precisely how this one works, but it has to do with disrupting DNA. Toward the end of the first World War, mustard gas was being used on troops, instilling terror of biological warfare- a weapon nobody could fight. As the beginning of the second World War loomed, chemists were frantic to find an antidote, so they started by studying the effects of mustard gas in the bodies of soldiers affected by it. Since the ability of mustard gas was known to suppress immune cells, the same cells that are overproduced by leukemia or lymphoma, it was theorized that it might be effective at suppressing cancerous immune cells as well, and could be used to treat existing leukemias and lymphomas. In the following years, the formula was tweaked and honed to be more damaging to cancerous cells and less toxic overall, and evolved into, among other formulations, the drug cyclophosphamide. Since it is highly toxic, they try to limit the doses to the absolute mimimum needed. The most noticeable side effect, aside from the usual chemo lineup of hair loss, nausea, potential organ and tissue damage and various neuropathies, is how badly it makes Daniel's eyes burn when it is being administered. Tears run down his cheeks and snot pours from his nose faster than we can mop it up for the thirty minutes it takes to push it into his bloodstream. These infusions are accompanied by six hours of as much fluid as he can handle to limit it's chances of staying in his body long enough to create life threatening side effects, including a secondary cancer such as Acute Myeloid Leukemia or bladder cancer. So far, he has had two doses of cyclophosphamide. I believe Grandma Sandi also got this one.

Together, these drugs represent an attack against cancer from every known angle. Since no single line of attack is going to be one hundred percent effective, if one misses mopping up all the haywire cells, another will hopefully succeed. Yes, there are risks. Huge ones. And yes, there is the probability other lines of defense already exist that are not mainstream yet. But leukemia was the first cancer to be successfully treated by chemotherapy. This complicated (to us) barrage of treatments has been fine-tuned for over sixty years. Hospitals all over the country share their info with each other, participate in the same clinical trials, give identical treatments and painstakingly chart results, and this has turned a death sentence into a sometimes (depending on the subtype) over ninety percent chance of long-term remission. This is better odds than any "natural" alternative treatment for this type of cancer. And there is a reason for this. The reason is collective knowlege from thousands of research labs and brilliant minds who understand disease and the human body far better than I can ever hope to. And lots and lots of failures, aka deaths, which they learned from. And continue to learn from. We keep repeating to ourselves that we live in the right time, in all of history, to get cancer. And the time will just keep getting better the longer we live. If we had not waited eleven years to have Daniel, but instead began having kids immediately after we got married, we would have gone through this ten years ago. And in the last ten years, success rates have inched up just that much more. It's a great time to be alive. And to stay that way.

Words to live by

Hello and welcome to baby naptime, mama write time. It may be 5:30 in the evening, but both babies are simultaneously napping. I'll take it and call it a win. 

Grandma Sandi is here at the moment, folding my laundry. She drove out from Kansas for two days of baby snuggles. I keep telling her that while folded laundry is nice and all, and she's welcome to keep doing it, she's the only one who bothers. My philosophy is that life is too short to wear matched socks, underwear with crease marks or shirts without wrinkles. Looking wrinkled is just my way of telling the world I have better things to do than to spend my day putting away clean laundry, and they should be just be glad it's clean as evidenced by the wrinkles from lying in a pile on the couch, and that I don't smell as bad as I look. And besides. A mother who looks too put together is just suspect. Not relatable. Clearly has superpowers and therefore will never be able to hang with underachievers like myself, or even upper middle achievers like most other women. This is, naturally, why I have yet to lose those last fifteen pounds Alex left on my hips when he exited in April. I keep it to make my friends feel better about their lesser shortcomings. (And because I like the simplicity of only having to choose between big and bigger yoga pants when I dress myself.) And why my eyebrows often grow down into my eyelids. And why I always have dried milk on my shirt and spit-up on my two pairs of yoga pants. And I let people into my house when it is less- far less- than sparkling. And why my kid eats french fries in the car and I leave the dehydrated ones tucked into his car seat indefinitely. It's hard to make these sacrifices, but I do it for my friends. So they won't feel intimidated by me. So they can even feel a little bit better than me. Because everybody needs to feel superior now and then. And if I can't provide that service for my friends, who will? 

I do, however, currently have about twenty jars of soup all packed and ready to go in the pressure canner- grass fed beef vegetable stew, chicken tortilla soup, and gumbo. So there's that. Look at me inching up the achiever spectrum.

Last night, we went to bed at a decent hour, like 9:45 pm, and after Daniel had finally nursed himself to asleep I set my alarm for two hours to give his tummy a chance to empty for his mercaptopurine. The alarm jerked me out of a coma, clawing and panicky, and grabbing at the source of the awful noise, but that was not as unpleasant as getting poor Daniel out of his own coma to take it. We ended up waking the entire house, me wrapped around his thrashing little body, holding his head against my shoulder as I tried to convince him to open his mouth, then swallow, while he fought. The whole time, me shhh-shhhing and trying to speak soothingly to him, reassuring and trying to calm him when the only thing that would actually work to calm him was nursing, while all I really wanted to do was exactly what he was trying to do- fling the syringe across the room. And then, of course, he had to cry himself back to sleep without boob, just my cuddles, which he scorned because I could not/would not give him boob for two more hours while the Mercaptopurine absorbed. So he lay there crying inconsolably until his sobs quieted into deep breathing again, and I lay there with a giant engorged boob leaking all over, and the one thing we both needed, we couldn't do. Because cancer. Finally at 4 am, I tried to gently wake him to help me out by nursing, but he was in too much of a fog to wake up. I was soaked in milk, so I got up and pumped a little- just eight ounces- out of "his" boob to relieve some pressure so I could sleep. Then at 4:30, Bobby got up to go to work, so I got back up as well to take him to his truck eight miles away. By the time I got back, grandma had moved to the bed, taking up residence in my spot between two half-waking babies, so I climbed into B's side and grandma, Daniel, Alex and I finished out the night in varying degrees of snuggle. Such is sleep in our house these days. Fluid. Multigenerational. Organic. Sometimes indecent.

Indecent as in, I awoke in the hospital the other morning to sunlight and a nurse changing Daniel's overflowing diaper. I was lying on my back with my arm flung out beside me, Alex asleep on my arm, the neck of my shirt pulled down, one boob out and staring the nurse in the face as she bent over us. I felt so incredibly classy in that moment. There is just something about waking up from sleeping flat on your back in the presence of strangers, drool running down your cheek, eyes unfocused in the brightness, breath whistling through several big dried boogers in your nose thanks to the hospital air that makes the Sahara Desert seem like Seattle, while flashing your son's caregivers with funbags that are just not quite so much fun after two full term pregnancies and lactating for the last 30 months straight that just puts your whole life into perspective. To quote the male nurse I awoke to fishing around in the dark one night under my sleeping bottom looking for Daniel's IV tubing, "We really should know each other's first names before we get to this point." Words to live by. I feel like this is a statement that sums up most of my life these days.

This last Methotrexate infusion knocked Daniel on his bottom, nausea-wise. His zofran is not really keeping ahead of it. I tried zantac twice, but he barfed it back up immediately both times. He has become genuinely terrified to go to the bathroom, crying and clamping his hand over his mouth when he pees, the dark yellow, strong smelling pee of a dehydrated little boy wafting past his face and making him retch. He cries and heaves when I change his poopy pants, too. And just the motion of sitting up in bed yesterday morning was cause for vomiting. He wants to nurse, but refuses to swallow. He puts his lips on my boobs, but with his mouth shut. The familiar position of nursing is comforting to him without needing to taste or swallow anything. He needs to be peeing at least one milliliter per kilo per hour, if he pees less, he will need to go in for IV fluids. Today he has peed 200 ml in 13 hours, and he weighs 13 kilos. This means he has managed, even with his nausea and mouth sores, to drink exactly 31 milliliters more than the absolute minimum required to stay out of the hospital. That's like the equivalent of one large swallow of water. His eyes are starting to look legitimately...chemo-ey. That particular shade of bruised brown creating circles under them, down onto his cheeks. Hs face looks pale and tired. Here he is, sleeping with his little yellow pan close to him, lest he need to barf...

One more high dose Methotrexate infusion. We can do this. He can. ...I hope. Every one gets worse in it's way. The first one, that rash. The second, that fever. The third, this nausea. I hope it's not a new one next time that's worse. It hurts to see him so miserable. 

I really think I am a better person for the experience of this interesting little stop in cancerland. More peaceable. More patient. Quieter. Sadder, but with more depth of emotion and empathy. It isn't that these things weren't there before, I just didn't give them as much airtime. This experience has me less reluctant to feel. And I feel...more. More determined to live in the moment, every moment. More aware that with every breath, everything can change. More heart, more love to go around. But please don't make me a liar by suggesting this is the reason my baby got cancer. Because I just can't. I might not respond to such a suggestion with any of these listed qualities. There is no way I can be okay living in a world, or with a belief system, or subscribing to a philosophy that suggests an innocent child is merely a pawn in a scheme of "it all works out for the best". Who's best? Certainly not the child's. To suggest such a thing is to suggest a child's suffering is justified. No, I mostly just live in a world where there are consequences. Consequences of our human imperfection. Of random errors and mutations in genetic code. Of incomplete DNA replication. Of even lifestyle choices that may damage DNA and disrupt the successful replication of cells. But some master plan arranging cruel circumstances involving sweet, undeserving toddlers to achieve some future goal? Just no. 

Of course, to claim personal betterment as a result of less than ideal circumstances is a very human thing to do. We as humans tend to maintain our baseline. This is our psychology. People who want to be happy tend to be happy with the road taken and vilify the road not taken. Winning the lottery doesn't make someone a happier person years after the fact, just generally less stressed out about the lack of money, specifically. We make a life and find happiness with the person we did marry, and eventually convince ourselves we couldn't have possibly been happy with the one we didn't. Whatever our level of contentment before inconvenient or tragic circumstances, it tends to be much the same afterwards in moment-to-moment life, given an undetermined amount of time and coping. Granted, when one is missing an important person that once enriched their life, there will always be a giamt chunk of happiness missing. But choosing cheer (however modified by grief) in moments that call for it does not change. Previously happy people who have become handicapped usually say it has made them a better person. Previously pessimistic people who experience incredibly good luck find ways to still be unhappy. As long as our delicate balance of chemicals in the brain plays along and keeps us from clinical depression, statistically we will eventually return to the outlook we've always had. Or so the studies say. So perhaps, when I say I like who I am becoming over who I was before, I am simply being human enough to attach meaning to senseless, random life.

Simone's devastated, grieving mama made a comment on Facebook yesterday that has made me reflect a little bit. She said (and I paraphrase) perhaps it was having a sick baby, but her patience with Simone was limitless. Never did she lose her temper or snap at her. Their relationship was one of unbroken trust. (She went on to say it was now that she felt she had let her down, when she could not save her, which, while heart-wrenching, is exactly how I imagine myself feeling after this time of being intensely needed, should we be that one in ten who won't walk away from this.) And I thought, this is how it has been since Daniel was diagnosed. I attempted to be aware of the emotional undercurrents making him act out before his diagnosis, and did my best to understand them and react accordingly instead of taking the easy way out by addressing the effects of the emotions instead of their root, but now I would not dream of being angry with him. Not even in the middle of his steroids when he did nothing but scream for fifteen hours straight. I didn't even take out my frustration on people who weren't him. I have just lost my desire to lash out, for the most part. Well. Until lately, when I made the in-hindsight dubious decision to go back on birth control. Now I save my snark and mads for Bobby. Which I'm not proud of, just cannot tell a lie... We're both trying to tough out this first month or two of me trying to rise above, in spite of being a crazy person, to see if it gets better. If not, life's too short to spend it being a mostly well-balanced person trapped inside a crazy head.  Better the baby box be a ticking time bomb than me be one.

Twice, before he was diagnosed, I lost my calm with Daniel. Both times were during a particularly unstable time for me, thanks to pregnancy hormones, stress of relocation and Bobby's insane schedule, and both times were in the middle of the night when he would wake up crying, go out to the dining room, and sit in his chair wanting eggs. So, thankful at least he was wanting to eat, I scrambled him an egg. He took one look at the plate, grabbed it, and flung it, eggs, fork, and all, across the room. Even shattered the plate once. And just as quickly, I grabbed his little hand and smacked it. Both times, he stopped crying in shock, then, whimpering, saying "uh-oh!" he held his hand to my mouth for kisses to make it better, unable to comprehend that I had intentionally caused him pain. And in my sudden crushing guilt over my betrayal, both times I told him over and over I was sorry, gathered him against me and we sat in the recliner in the dark kissing away his owies, physical and emotional, letting the storm pass, until he fell asleep. 

Now, in hindsight, I know he felt weak, tired and achy, his blood supply diminishing every day, his appetite lacking, and was as irrationally angry and irritable as I was while incubating a tiny human inside me. Now I know what was going on. Now I want to tell every parent I see punishing their kid instead of sitting down and truly listening to them how I was goaded, twice, into violence, and how this still haunts me, because both times, I only betrayed and confused my beautiful little person by simultaneously being the person who caused him pain and protected him. Had I continued doing this, by now he would have realized I was not hurting him accidentally, and he would have had to try to understand why. I know we all have to find our own way with our own children and base our reactions on their personalities, and what I am witnessing in an ugly moment is not always representative of what actually is the norm. So I don't judge by first impressions. But I do know that losing it with my babies is something I just don't do anymore. And a lot of it is because, having looked behind the door that is the posibility of ever losing one of them, I don't want to have a single regret. Whether my time with them ends with them loading up a vehicle and driving away from me headed for college, marriage, career, or just bumbling around finding their own way, or whether it ends before that, unexpectedly and tragically, the daily knowledge that this moment is the only one we are guaranteed makes me a better person than any amount of resolve ever could. I hope I never lose this perspective. 

We are often complimented at the hospital, clinics, and labs we frequent on my "well-disciplined" child. I hear often from the staff that they can tell immediately which children receive discipline at home and which ones get a "cancer pass". Or simply have parents who don't discipline. I shrug it off because I don't really have a child who demands a lot of discipline, so I will never know if it is nature, nurture, or if maybe the terribleness is simply delayed with him. What I do know is if we never tried to understand, if we assumed every meltdown was simply him deciding to be naughty and confrontational, we would miss so many opportunities to understand and show him love, but gain so many opportunities to foster hurt and betrayal. The same desire to understand applies to our sleeping arrangement. How many times does he awake in the night in sudden, childish terror to find us close, breathe a sigh of relief and fall back asleep? How many of those raw, vulnerable moments would I miss with him in his own room, door closed, not allowed to come out? Or, as in the case of my own childhood memories, paralyzed in the dark, too terrified of the monster under the bed to be able to call out, let alone run down the hall to my parent's bed? I need him close to me as much as he needs me close to him right now. To spend eight hours of every twenty four away from him squeezes a band of anxiety around my heart. The time is coming when he will insist on his independance. It is already starting, him pushing me away from him so he can go to sleep in his own bed, pushed against ours. Someday, I will nurse him to sleep for the last time. Someday, he will sleep in our bed for the last time. Someday, he won't be there for me to love him back to sleep after he wakes up confused and afraid. I won't feel his panicked breathing calm with only the weight of my hand on his back. And someday, Bobby and I will have our bed, our room, our space, eventually even our entire house to ourselves. We can wait. 

My friend who's baby has a diagnosis that is unquestionably terminal says there is one thing you cannot do when you know your time with them is limited. You simply cannot leave anything on the table. You make absolutely sure, as much as is in your power, that you do. You go. You experience. Because one day, and you never when, it will end and you will be left only regretting the love you didn't offer, the experiences you didn't give them, the happiness you didn't feel. (Again, I paraphrase.) And to this, I ask myself, but isn't this life? Childhood is, by it's very nature, fleeting. Life doesn't come with guarantees or do-overs. Even those of us with healthy babies aren't guaranteed tomorrow with them. Live. Go. Do. Laugh. Love like it could all end tomorrow. 

That's not too dark, is it? In this strange new world, it doesn't feel dark. It feels like the opposite of dark. It feels like the only way to arm ones self against the dark. 

Song for Simone

Last night, as I was trying to get Alex to sleep, I looked up my long-dormant private blog to find the letters I had written to my future baby during the year of emotional and hormonal upheaval that was two miscarriages and a growing concern that I might not be able to ever get past eight weeks of pregnancy, the discovery that supplementing progesterone could keep a baby in there, and the fear, the closer I got to my due date, of losing him as my heartbeat synced itself to his. I lay there nursing and reflecting on how we hope, and we plan, and we bring these little humans into the world thinking we know what we can expect of our lives with them, and then we can only hang on for the ride when sometimes, we realize the ride looks nothing like we thought it would. Then I signed into my blogger account and retrieved this letter, written at the very beginning of our baby journey.

Dear you

since you don't exist yet, I don't have a name to call you. Any name I would give you at this point would define you, and I don't want you to be defined by anything but you. As time goes by, the circumstances of you will define you, but for now, you are just you.

How do I introduce myself to you? I am your...I am me. I want to be your mother, and I hope I will be, and if i never am, it will break my heart. We have waited so long, just the two of us, and we have done so much and we have gone through so much, and now that we have finally come to the realization that we are ready for you, I want nothing more than to hold you in my arms. Today. I don't want to wait. I love you and I want you, right now.

Whether you will come from us or from someone else, I honestly don't care. I want to show you that nothing matters, whoever conceived you and carried you could never love you as much as I do. But adoption is a long process, and B wants to try to have our own baby first. He says he does not have the energy to deal with beaurocracy and home visits, he would rather deal with a pregnant wife. So right now, it is all about timing and trying to be in the same place at the same time, because it's a little hard to make you without physically being together. B has lived in Kansas for two and a half months, but I have only spent about a week in Kansas so far. I am still living in Colorado. I was pregnant, but six weeks later I miscarried. I thought that maybe that was you, but it wasn't. That was something that wasn't going to happen.

Any way you come to us, I want you to know one thing. I can't wait to meet you.

I could give you our history, but I think you will hear enough of it. Maybe, as time goes on, you will need to know, and I will tell. But right now, it seems a little bit exhausting to me to recount it all. I am living in the future right now. I like it there. You are there. I love you.

Love, Me.

Reading those whispers of love echoing from the me who was not yet a mother, but at the same time so much more of a mother than I am some days now because I was not distracted then by the day to day stuff, I feel I could learn a lot from that sad would-be mother who would have given anything to meet her child. The ride we are on is all a part of what we hoped for- the chance to love fully and unconditionally. No matter the places the ride takes us. Knowing there is a place the ride could go that is a dark place we almost never dare visit because it is just too horrible to think about- that at any given time, we are only a breath away from returning to a time before this new light switched on in our lives. To have the world be as it was before them, only now to be aware of the beautiful personhood of that little person who took your heart, to have felt the reality of their presence. And suddenly to find yourself sitting there, surrounded by everything they surrounded themselves with, but no warm little presence that is them, that is too horrible to think about. The cold that is so much colder in the absence of the constant, trusting warmth and gentle touch. The loneliness that is not only their absence in the moment, but the absence from every future moment. The contrast between the life that made your life mean more, and the sudden darkness you can't even allow yourself to contemplate, should that life be snuffed out. 

When you hear the words, your child has an illness that will kill him if not treated with a treatment that may also kill him, you crack open the door to that dark place, and then, when you see the darkness with your own eyes, you realize there is no way you can go there unless there comes a time when it gets so bad there is no other place you can go. So you close that door, and every time those horrible fingers rattle the knob on the other side, you throw your back to it, lean your weight against it, and stare straight into whatever source of light you can find, burning it into your retinas, and you focus on petty things because anything is better than that door and the darkness behind it.

As I was lying there with my babies snuggled against me, reading the love letters I had written to my future child, seventy miles away in the hospital we had left a few hours earlier, absolutely out of nowhere, even with their backs pressed firmly against it, our friends Mike and Traci's door suddenly flung wide open and swallowed them. At 9:46, Daniel's little friend Simone took her last breath. On a normal, everyday sort of evening in her hospital room, where she was staying because of a cough, her breathing suddenly became labored. Within twenty minutes, she was down in PICU. And twenty minutes later, she was gone. Completely unexpected. One moment, ordinary and "normal", just playing the hospital game of waiting, and then next, gone. I had decided not to go see her on our way out of the hospital earlier because we were discharged during rush hour and wanted to get home as early as possible. Silly, now, in hindsight. I should have. 

Yesterday the world was insanely cruel, but made more sense than it does today. Yesterday the world had her in it. Yesterday, her mom was another breastfeeding mama with a sweet little two year old constantly asking for boob and comfort, trying to not go crazy in isolation. Today, the baby who has been the center of their universe for the last two years is just...gone. Leaving nothing except toys and clothing, her dad's empty arms, her big sister with a missing sibling, her mom's painfully full breasts. No gentle warmth and tiny, exploring fingers, no big smiles and little giggles, no trusting gaze letting her parents know that in her eyes, they were the whole world, as she was theirs. The weight of the nothing she left behind is just crushing, even to us, standing on the threshold of their door looking in, blown away by the sheer magnitude of the emptiness behind it. We have both cried off and on for hours, crushing our babies, their warmth and their life, to us, wrapping our hearts around them so tightly that if they are ever torn away, eveything we are will be torn away as well. 

And this happens every day. Everywhere. To live is to know joy and then, suddenly, unimaginable pain. To be a parent is to wear your heart outside your body, where anything can happen to it. And to do your best, knowing that your best is no match for a tiny body bent on self-destruction and the treatments that wear it out to the point that they can no longer fight. 

This is Simone, the last time we saw her, two weeks ago on the day after her relapse was confirmed. This is warmth and love, trust, soft skin, tiny hands and feet, new hair, fragile hope for a successful T-cell trial that could still save her life. The world without her just doesn't feel right. 

We should be sad, but we should also be furious. Because if more than four pennies of every dollar donated to cancer research went to cancer patients under twenty years old, some treatment lying in theoretical form in a dusty drawer somewhere because it never received funding to move beyond theory might have saved her. Instead, the treatment she got wrecked her tiny body until it just couldn't hold her inside it any more. 

She is loved, exquisitely and completely. But she deserved more. She was supposed to grow up. It wasn't supposed to end like this. 

Classic, if not classy, moments

Hello again from our 7th floor room in the clouds! #3 of four methotrexate infusions this phase (I believe there will be eight total?) is pumping into my baby's little body as I write. The two of them are finally asleep after two hours of fighting. By the time they checked out everything was tragic. Well, Daniel's world becomes tragic when he is exhausted. Alex just gets furious. I've managed to give birth to a little me in that one. Truly terrifying, the way his squeals of excitement can turn to hysterics in the blink of an eye. His emotional barometer is a touchy one. Daniel's seems to mostly depend on how he feels physically. Alex is all about the whim of the moment, it seems. And social interaction. He's unencumbered by the fear of failure, and his favorite pastime is copying the expressions he sees on the faces around him. Our favorite game of late is the "how do we feel" game. I exaggerate an emotional expression on my face and hold it until he copies it, or at least attempts to, then I change it suddenly. This is cause for shrieks and gales of laughter, after which he tries to copy my new expression. His other favorite thing is roughhousing. Being thrown in the air, dropped onto a pillow, dangled upside down, spun around, pulled backward by his feet, suddenly being pretend-dropped. I call him our turbo baby. Everything with that one is just bigger, stronger, faster, louder. At five months, he wants food. Yells and grabs for it when he sees it. It took Daniel ten months to even show interest, and then eating was a studious practice. At five months, Alex wants to stuff his face with abandon, gasping, gagging and sputtering, with me freaking out ready to grab and heimlich him. I suspect he may get teeth much sooner than Daniel, as well. I am fairly inconsistent yet with allowing him to get his hands on "people food". Some days, he seems more ready than others. I did allow him his own piece of watermelon the other day, with wildly enthusiastic results and a little tantrum or two when he dropped it, but this was not actually the norm for what we are doing, food wise, yet. 

We have been enjoying our last few weeks of freedom before flu and RSV season descends upon us. Bobby's dad was out for a week over last weekend, and we went to North Lake Park to ride the train, which, after Labor Day, is now parked for the winter. This coaxed a few giggles out of Daniel. And also cost a little lecture for me, sitting on the platform waiting for Daniel and Bobby to ride the train, from the station master, a member of the Lyon's club in charge of the train. He didn't appreciate that my shirt had the word "Evolution" across the front, and the definition on the back that detailed Keystone Resort's evolution into a fancy schmancy Vail Resorts ski area. I must admit, I had no patience to hear him out. Another day, I might have politely listened, played along to see how far he would take it, but on that day I had a piece of dirt stuck to the backside of my eyelid (ha, yes. I had a mote in my eye), a stream of tears running down my cheek and a red, stinging eyeball, not to mention I was walking the fine line of risk vs reward, allowing my toddler to ride in a train infested by goodness knows what plague with a Labor Day crowd. So when he informed me the word "evolution" was offensive to him, I just laughed breezily and said, "Oh, I know it can be. Don't worry. It's actually referring to the evolution of Keystone ski resort". And reflected, as he probably didn't, on how society polices each other according to our own beliefs and misconceptions and how alienating this can be, how we interact with each other less due to our apathy when we know nothing about each other, and how we tolerate each other more put of empathy when we know each other well, but when we know (or think we know) just enough about each other to snap us out of apathy, but not enough to create empathy, that's when we gain the boldness to try to be each other's moral police. And that I should probably wear that shirt more often as a personal lesson in love and tolerance. Then I wiped the snot from my nose, thanks to my irritated eye, and shifted my focus from possibly well intentioned but obnoxious old man to innocent sick kid with a big grin on a rare day out.

As far as how we all are, tomorrow the sun may rise and with it, new optimism. But right now it is after midnight and I am sitting up, wondering at what point I should even try sleeping, because the tot in the bed is getting 135ml/hour fluids and methotrexate, and a diaper will only hold about 250ml before it starts to leak toxic, florescent lemon-lime tinted pee all over the bed. He just soaked his blankie and Curious George doll that comprise his night-night essentials. Plus, I just gave him his mercaptopurine, changed his clothes and bedding (which meant moving Alex, who was sleeping at the foot of the bed, so it also meant nursing and rocking him back to sleep) so it's best if I stay out of sight as long as possible. Daniel may otherwise awake and demand to nurse, the enzymes in my milk binding his mercaptopurine and allowing it to pass out of him without being absorbed, defeating the purpose. 

I guess I just have the sads tonight. I had the mads earlier, feeling a bit put-upon by the universe, angry about cancer somehow managing to reach into every part of our lives and dictate exactly what we can and cannot do. Mostly cannot. Even as I think these things, let alone write them, I think of people so much more put-upon than we are and feel guilty, but I justify my feelings by feeling mad and sad for them, too. It just sucks. All of it. The words "kid" and "cancer" shouldn't belong in the same sentence. Cancer shouldn't belong in any sentence. Tonight, instead of being grateful we live when we do, with cures for cancers as advanced as they are, I am sad it isn't the future yet, when things are even better. As I am so humbled by the generations of those who sacrificed their lives to be the statistics and data that turned into the treatment we are now getting, I am also a little angry that Daniel is still just a statistic in this massive medical machine.  

I am frustrated by never being able to make plans, and if I make them, never being able to follow through with them. I am frustrated that I am living in a new town, and am unable to mingle with people and make new friends. I am frustrated I can't address Daniel's growing lack of interest in playing with other kids as he becomes more and more isolated and more and more attached to his possessions over his relationships because rrelationshios are literally dangerous for his health. I am frustrated we have to pound the road between Loveland and Denver so often. I'm frustrated by all the early mornings, the fractured sleep, the lack of appetite and unpredictable food preferences, the constant packing and unpacking of the suitcase between trips.

I am frightened by the harshness of the treatments being dumped into Daniel's tiny body. Frightened by the fact that the most intense part of his treatment is ending in five months, because I can no longer trust that his body will do as it should and not suffer the same glitch that created his cancer the first time. Right now, I have the comforting thought that we still have five months to mop up any rogue cells. But at the end, mopping opportunities behind us, I will second guess that we did not do the more intense clinical trial, that sometimes we did not make it a full two hours after mercaptopurine before nursing, I will even second guess the french fries I let him eat because at least he's eating, sure his deplorable diet during treatment will encourage his cancer to come back. 

But mostly, I'm just sad for him and all the children. The helicopter hovering above our window before landing out of sight on the roof above our heads is a novelty for Daniel, but me, all I can think is, someone's baby is on board. Someone's life is shattering into a million fragments of fear and uncertainty right now.

(Next morning, continued after waking... I fell asleep with my forehead on my iPad for a long interrupted night of diaper changing, pee sample collection, vitals and beeping IV pumps.) 

Bobby decided he needed to work during this stay, so he has been in and out. My dad, hearing this, decided I should not try to do clinic and lumbar puncture day by myself, even though I was game to try with Daniel's general anesthesia and Alex's ever increasing needs. So he drove out late Tuesday night, went to bed after midnight, and the whole house was up at 4:30, thanks to Alex waking up completely happy, kicking, squealing, giggling in the dark. I finally got up with him and took him to the living room to play on the floor so Daniel could sleep. Grandpa, who was awakened by the happy noise, got up and offered to hold him while I went back to bed, but no sooner was I back in bed with Daniel than Daniel woke up asking for boo. Which he could not have, due to his procedure scheduled in a few hours, so I suggested he go check the living room, where he was surprised by grandpa who had arrived after he went to sleep. We traded babies, I took Alex to bed where he eventually wore himself out and consented to bring nursed back to sleep for the few remaining minutes left before the alarm rang, and Daniel and Grandpa dozed in the recliner together. Then we got a late start, so we broke the speed limit all the way to Denver, where Grandpa ran Daniel up to the clinic while I parked, unloaded the stroller, installed Alex in it, got my stuff gathered up. As soon as Daniel was awake in the recovery room, we moved into our inpatient room on the oncology floor, grandpa carried up our many blankets, toys, suitcase and potty chair, then left to drive four hours back home just as Bobby arrived, his night shift behind him. Bobby spent the rest of the day playing with Daniel while I entertained Alex, and in the evening we traded off our caregiver duties to allow each of us a two mile walk through the Anschutz/ University Hospital Campus. After a day of being inside with crying babies, my walk under leafy trees in the balmy evening breeze allowed the stress and anger of the day to slide off me, leaving only the actual underlying emotions- just the sads. Which haven't been helped by the fact that this stay's particular monster looks to be nausea. Every time it's been a different monster. The first time, that nasty rash. The second, time. That extra two days we spent waiting to clear. This time, we have vomited three times already this morning, and he's curled in a ball under his blankie, a pale little boy who's given up on trying to be normal or active. 

The big visitor this weekend was Aunt Mary. She arrived Saturday morning on the airport shuttle, surprising Daniel as he walked out the front door to check the status of the neighborhood and the weather. No wonder the kid has to wiggle out of bed first thing in the morning for house and yard patrol. He just never knows who might have showed up during the night or be standing outside his front door with no warning. The two of them were fairly inseparable the next three and a half days, except when Mary was allowed to hold and play with Alex. Which was interrupted more often than not by her being dragged away by a finger to go "see" things, mostly Daniel's toys. It was amazing and relaxing having her there. I just walked out of the house to go buy groceries. Twice. Just walked out. Grabbed my purse, got in my car and left. It felt sinful. We cooked mostly healthy food, relaxed in a dark house during afternoon baby naps, went to the park and library story hour, where I once again felt a little judged by the other parents for my slathering of purell, my not letting him play with the stuffed animals, the purell-ing of the toy train set, and encouraging Daniel to join into the activity songs...from a distance. We even got to sit in a coffee shop long enough to have a cuppa joe before the toddler meltdown chased us out the door. 

All in all, it's been a very blessed week, surrounded by family, enjoying the sweet pleasure of little things- good food, love, happy activities with Daniel that are free but also priceless- hours of drawing and playdough on his little picnic table in the back yard, reading, snuggling, park and play time. But it's always the lovely, normal weeks that reveal the insanity of the crazy times. On my walk last night, when I turned toward the towering glass and brick of Children's Hospital, I wished I didn't have to. The last thing I wanted was to go back inside the building, away from the sounds and scents of lawn sprinkler dampened dusk. 

But now we are back here for a few days, and again already with the troublesome thoughts I ignore most days. The frightening side effects of Daniel's treatment. The sleeping punctuated by being a caregiver. The being a caregiver. The wondering if maybe I'm not doing as well as I or anyone else think I am, maybe I am actually losing my mind, just slowly enough I don't notice it going. Or maybe this isn't even a legitimate hardship, because others have it so much worse. Maybe I'm being a huge baby. Maybe I have it really good, especially compared to other's hardships. Maybe I just can't handle being a grown-up.

^As if I might forget the giant responsibility, right? 

Or maybe it's just the hormones. TMI, I suppose, but we finally gave up on trying to make permanent decisions about our future. Knowing we are not in a good place to decide whether we are done having babies, but also that another pregnancy right now is probably one of the few things that would push us right over the edge, I went on birth control for the first time in over seven years. And almost overnight, have become a raging chocoholic with a bottomless appetite, tearful outbursts and a short temper. Bobby tells me he hasn't seen me this unstable since my first miscarriage. I don't know what to do about this. Insurance just spent $2,300 to have a tiny piece of hormone releasing plastic inserted in the incubator for up to five years to keep anyone from accidentally taking up residence in there, and now, even though it is only a small fraction of the hormones an oral contraceptive would release, hence my decision to go with it, I am suddenly a sad, weepy, raving lunatic. I want it gone. I want myself back. But then I am right back where I was a week and a half ago, with no 99.98% effective, reversible at any time plan in place. Even celibacy is less effective than that. Statistically. Again, with the being an adult with adult problems. I'm so over it. 

It's a lazy day here in the luxury suite. Two of us are passed out, the third is nursing himself into a milk coma, and I am considering joining the siesta. After throwing up the third time this morning, followed by another dose of the Zofran he had thrown up, plus some Zantac followed by a little nap, Daniel climbed out of bed feeling much better and braved a bite of string cheese, so we took to the halls to get a little exercise. He lost no time dragging me and his IV pole to the playroom, where Flashes of Hope, a volunteer photography session for patients and their families happened to be doing hair, makeup, and photography sessions. Thrilled to finally be here on the same day they were, I signed us up and hopped up in the chair to get all prettified while Daniel played. Just in time, Bobby showed up after his night shift to join us for the pictures. By the time they were ready for us, Daniel was looking a little sober...we thought he was just tired, so we started to clown around to coax a smile out of him. Well. We suddenly got something out of him, but it wasn't a smile. It was his string cheese, all over himself and the photographer's drape. After he had heaved into styrofoam cup for a while, perched on the nice black-draped ottoman, he perked up just enough to get some non-crying, if not exactly smiling pictures of him surrounded by his family. I truly feel like they are going to be perfect. Real. Representative of this time in our lives. Bobby with bags under his eyes and hair smashed by his hat, fresh from twelve overnight hours in his truck and trying to not look too annoyed. Me with fresh hair and makeup, determined to make it work and refusing to admit it was a bad idea and that I had lost this round, genuinely laughing at the irony of Daniel's waiting to barf until he could do so with perfect timing. Alex hanging over my arm, almost an afterthought, crusty eyes mesmerized by the pretty camera and the pretty girl behind it, oblivious to all else. And Daniel, cuddled close between us, unamused, pale and exhausted with chunks on his shirt. It's a moment, and I hope they don't edit it too heavily, because as far as moments go, it was pretty much classic. 

Protocal

We seem to have escaped the nasty side effects of the last high dose methotrexate this time, thankyverymuch. Minor bumps on his face, an itchy scalp that might even be attributed to the hair growing back so thick and fast Daniel is almost not bald anymore, definitely some nausea and definitely some mouth sores, but not so bad he can't at least manage fluids as long as they are non-acidic. Since the infusion didn't get started until twelve hours later this time than last time, I waited an extra day to proclaim us free from the misery that was two weeks ago, but I think by now, we may be officially in the clear. The ped onc who saw him while inpatient was skeptical that what he had last time was actually side effects of the methotrexate alone, and we were skeptical that it wasn't, but again, it appears the doc was more right than we were. Fancy that. He probably had an existing allergic reaction of some sort going on that was inflammed by the methotrexate further stressing his body. He did go in with a bit of a rash last time that they attributed to the possibility that his three weeks of being off chemo and his body taking that opportunity to do a little detoxing, the effects of which may have been coming out of his skin. Whatever the cause that was absent this time, we'll take the effect. He's been grouchy, has taken to flinging things that frustrate him and swinging things, like broom handles or a whip-like length of hot wheels track at us for no apparent reason, which leads to us having to stop and reset the mood, convincing him to kiss away the owies he inflicted, holding him until the anger and frustration passes and he can process things logically again.

Grandpa Danny was here for a week, and Aunt Marci over the weekend. I don't have any pics from the weekend, but I do have this one from Tuesday evening, whenwe took Chinese takeout to the splash park for a germ-easy evening out of the house. Maybe it's just my imagination, but it just seems like there are fewer germs and viruses lurking outside where the fresh air and sunshine can get to them. 

Lookit all that hair! It'll probably fall out again in the next phase, but the chemo we are on now is less of a hair-losing one. I'm obsessed with rubbing his head right now. He is less than impressed by this sometimes.

Daniel is such a man's man, obsessed with the men in his life, grabbing them by the hand and dragging them around the house to show them his toys and dictating exactly how to play with them. Grandpa Danny got to experience this for several days after we finally escaped the hospital after our 4.5 days there. Aunt Marci got a taste of this little dictatorship over the weekend, when he took to simply placing his hands on the backs of her legs and "driving" her around the house and yard to do his bidding. 

He actually has started being okay with eating again, as long as it is food that doesn't burn his mouth sores. Orange juice, tomatoes, salsa, out. Eggs, cheese, bread, bananas, in. Unfortunately, low acid often also means low fiber. And cruciferous vegetables are a no go lately, I assume given his changed taste buds. He can't tell me if he has the dreaded chemo-induced metallic taste in his mouth that makes almost everything taste disgusing in varying degrees, but I think it is obvious he has at least some degree of change in his ability to experience flavor normally. If you think a normal toddler's palate is a moving target, try adding a chemo regimen that turns even adult's palates back into those of toddlers. 

We finally had the opportunity to have Daniel's first physical therapy appointment yesterday that we started working on back in May, before he was walking yet. As fabulously as I thought he was doing, compared to how he was doing before, his therapist's much sharper eyes caught some things my jaded eyes missed. Like the fact that oddly, he is using his once-broken leg more heavily than his non-broken one, with the foot on his non-broken leg being the one that is more pidgon-toed. Not to the point of needing a brace, but she did recommend going back to the orthopedist and having custom inserts put in his shoes to try to correct his collapsing arches and help his stumbling, which may come from some chemo-induced neuropathy or may just be him. He learned to walk at a year, right on-target, but after that dropped behind as far as learning to run, even before he broke his leg, which may have been due to the disease slowly sapping his energy or causing discomfort, or may have just been an inexplicable delay. I personally think it might have been due to the giant upheavals we've experienced in the last year- as hard as we tried, his security became as moving a target as his taste buds are now. He started walking in January, and by May we had sold our business, by June we hit the road and our home was our camper for the next two months, in August we were yo-yoing back and forth between Kansas and Nebraska, Bobby bouncing in and out of our lives unpredictably. Then Bobby started his job here in Northern Colorado, and we didnt follow him here until almost two months later. Then we had a rental house where everything was unfamiliar, and mama all pregnant and hormonal, and Daddy working legitimately crazy hours, at the same time the leukemia was taking over his body, making him feel tired and irritable all the time. And just as things might have been getting back under control for that last month or two before big mama popped out another baby, boom. Broken leg. Kid's due for a break. Whatever the toddler equivalent of a week on the beach might be. Probably a week or two of his parent's full, undivided attention. 

After a lot of googling, I think I have finally located the treatment protocal Daniel is on, or at least really close. This is copied and pasted from http://www.ped-onc.org/diseases/ALLtrials/COG0232.html and heavily edited by me, acronyms spelled out, and non-relevant arms of the trials deleted. 

Note: this outline was patched together from the NCI online protocol and input from parents of kids with ALL. It is summarized here for our convenience, so that we can quickly compare our protocols. We do not guarantee the accuracy of this outline - it is not an official document. You can contact your child's oncologist and ask for the complete protocol document if you are interested in the details of your child's protocol.

All newly diagnosed ALL patients are enrolled in COG AALL03B1, Classification of Acute Lymphoblastic Leukemia.

At diagnosis of ALL, the oncologists at the local hospital determine an initial risk classification as follows:

At diagnosis samples of blood/bone marrow aspirate/Cerebral spinal fluid are taken and studied for cytogenetic/immunophenotype characteristics.

High risk ALL is treated on AALL0232, as outlined below. Standard risk ALL is treated on AALL0331. The protocols for infant, T-cell, and very high risk will be added to this site when they are available.

What is high dose methotrexate?

High dose methotrexate (HD MTX) is 5 grams/m2 administered by IV. Leucovorin rescue is used and begins 42 hours after MTX treatment begins and continues until the MTX is cleared.

Why dexamethasone vs prednisone?

Dexamethasone seems to work better but has serious (and potentially long-lasting) side effects, prednisone is less toxic. This study aims to find the optimum steroid dosage.

Induction, 4 weeks:

cytarabine intrathecal (IT) on day 1

vincristine IV on days 1, 8, 15, and 22

dexamethasone oral or IV twice daily on days 1-14 

methotrexate intrathecal (IT) on days 8 and 29

pegaspargase intramuscularly (IM) once on day 4, 5, or 6 (Daniel sort of tolerated this dose).

Consolidation (about 7-8 weeks)

cyclophosphamide IV over 30 minutes on days 1 and 29

cytarabine subcutaneously on days 2-5, 9-12, 30-33, and 37-40

mercaptopurine (oral) on days 1-14 and 29-42

vincristine IV on days 15, 22, 43, and 50

pegaspargase IM on days 15 and 43 (Daniel had a small reaction to the first dose, then had his big reaction to the second one, necessitating his 12 shots of Erwinia Asparaginase over two weeks to replace it.) 

Intrathecal (spinal) Methotrexate on days 1, 8, 15, and 22

Interim maintenance I

vincristine IV and high-dose methotrexate IV over 24 hours on days 1, 15, 29, and 43

leucovorin calcium IV every 6 hours for at least 3 doses, beginning 42 hours after start of each Methotrexate infusion

oral Mercaptopurine on days 1-56

Intrathecal methotrexate on days 1 and 29.

Delayed intensification(s)

vincristine IV on days 1, 8, 15, 43, and 50

oral dexamethasone twice daily on days 1 to 21

doxorubicin IV on days 1, 8, and 15

pegaspargase IM on day 4, 5, or 6 and day 43

cyclophosphamide IV on day 29

cytarabine IV or SC on days 30-33 and 37-40

oral thioguanine on days 29-42

IT Methotrexate on days 1, 29, and 36

After delayed intensification I:

SER (slow early responder) patients proceed to interim maintenance II and delayed intensification II

RER (rapid early responder) patients proceed directly to maintenance

(Note that Slow Early Responders (like Daniel, with more than .01% leukemic cells left in their bone marrow after induction) received two delayed intensifications.) Either our nurse forgot to mention Daniel's second delayed intensification, or he will only have one. So far, from what we understand, his treatment plan is: 

Induction, 1 month

Consolidation, 2 months

Interim Maintenance I, 2 months

Delayed intensification, 2 months

Interim maintenance II, 2 months

Maintenance, 3 years

Interim maintenance II

vincristine IV on days 1, 11, 21, 31, and 41

MTX IV on days 1, 11, 21, 31, and 41

pegaspargase IM on days 2 and 22

MTX IT on days 1 and 21

Delayed intensification II

Same as delayed intensification I

Patients then proceed to maintenance therapy.

Maintenance therapy

vincristine IV on days 1, 29, and 57

oral dexamethasone twice daily on days 1-5, 29-33, and 57-61

oral MP on days 1-84

IT MTX on day 1

oral MTX on days 1, 8, 15, 22, 29, 36, 43, 50, 57, 64, 71, and 78.

Maintenance therapy repeats every 12 weeks until total duration of therapy is 2 years from the start of interim maintenance I for female patients and 3 years from the start of interim maintenance I for male patients.

Patients are followed every 2 months for 2 years, every 3 months for 1 year, every 6 months for 1 year, and then annually thereafter.

The not-interested-in-breakfast club

Hello again from Children's Hospital, where we sit...and wait...and wait for the methotrexate in Daniel's blood to test less than 0.1% so we can go home. 

Bobby drove down with Daniel for his 10am clinic appointment on Wednesday morning, which did not involve a lumbar puncture this time. I used the luxury of his availability to stay home with Alex, preparing to be in the hospital for several days. This happened much more efficiently without the enthusiastic "help" from Daniel I usually receive. Bobby's dad flew into Denver from Ft Myers, Florida, his flight a bit ahead of schedule, so it worked out beautifully that on my way to the hospital, as I drove past the airport, I swung by DIA's west terminal for a curbside passenger pickup. The plan had been to have a little family reunion with B's siblings and their dad this weekend, in spite of the complication of our 48 hour inpatient infusion crowding the weekend. Since it didn't work on our non-hospital weekend for Jay and Wendy to come up here, Danny changed his travel plans to be here over this weekend, all of us going on a prayer that Daniel's chemo would clear from his bloodstream in time for us to spend a decent amount of time together, only to have Jay and Wendy realize it would not work for them this weekend either. So now Marci is on her way up by herself, Danny is going on day number four by himself at our house in Loveland when he's not here in the hospital with us, and we are still in the hospital. 

The hospital stay itself has not gone quite as smoothly this time as last time. Before they can start a high-dose methotrexate infusion, the patient's blood ph has to be greater than 7. When we came in, it was testing at 6.5. They started fluids and sodium bicarbonate to bring it to slightly more alkaline before starting his infusion. But instead of going up, it kept trending down. By late afternoon it was down to 5. It took until 10:15 that night, after ten hours of fluids and bicarb, for it to hit 7. At which point they started his infusion. So everything has been delayed by a day.

To get a jump on his mouth sores this time, he is supposed to swish three times a day with Mugard to protect his mouth and throat. He thinks it's sole purpose is to provide a creative way for us to torture him. His zofran (nausea) is in strawberry syrup (the sickly smell of which makes me a little nauseated, I can't imagine swallowing it) instead of his usual tiny disintegrating tabs, and his zantac has always been disgusting to him, but now it's just one more disgusting thing. He also gets crushed leukovorin in a syringe of water or apple juice, and nightly mercaptopurine. And somehow all of these meds are on a different schedule. It has become a nightmare this time getting his meds down, with not a single one that he actually likes the taste of. I feel like I am wrestling an octopus, all flailing arms and legs, trying to get syringes emptied behind clamped lips and teeth. And then his jaws slacken when I do get it in his mouth, the medicine running out over his bottom lip and down his chin.

Methotrexate is not necessarily fever-causing, but he has been bouncing around the 99-100.9 range for most of this stay. This does not have us on isolation, but we have ourselves on a bit of self-imposed isolation. Two of his new little playmates are also here, but now I am reluctant to let him play with them just in case he might be fighting a virus with this elusive low grade fever. They are both more neutropenic than he is right now. Blood cultures were drawn this morning, so we will know within a few days if he is fighting an infection or somethimg else. His ANC actually went up, from 1,200 to 1,500, during our stay. But it is still trending down, I am sure. It usually takes a little more than two weeks to hit nadir (the low point in his counts following an infusion) for his other chemo drugs. In the week between his last infusion and this one, his ANC dropped from 2,400 to 1,200. I am almost sure this next one will take him down to neutropenic again. We are trying to enjoy these last few days of us having a life in this cycle before we have to practice precautions that would be completely unreasonable if we had a healthy kid. Really, this might almost be it for us and our being able to enjoy life without excess germ and virus precautions until next spring. By the time we recover from this round it will be flu season again, and back into exile we go. 

Speaking of Daniel's little friends...

This is Kaylee, 21 months old. A few months ago, she was a normal kid, if fairly verbally advanced by virtue of being the youngest kid in her daycare. Then her left eye turned a bit to the side. Her doctor said it would probably correct itself, perhaps a virus had caused some minor damage to her optic nerve. Surgery to correct it might be an option in the future, but chances were it would correct itself as she grew. Two weeks later she began to have trouble walking, holding onto chairs to keep her balance. Her parents made an appointment for her several weeks out, but twelve days later she could no longer stand on her own. They took her to the ER, and were whisked through the waiting room immediately to begin waiting on tests. She was diagnosed with a DIPG, a basically untreatable brain tumor about the size of a golf ball. Shell-shocked, her parents took her home to arrange hospice care, because only two percent of people with a DIPG live beyond two years from diagnosis. Then came a phone call that sent them over the moon- upon closer inspection, she actually has something called an ETANTR, which is an acronym for a type of very rare, very aggressive, but sometimes treatable tumor that strikes toddlers. As of 2013, three hundred cases worldwide have ever been recorded. Fifty have been treated. Five have been successfully treated. Once they heard the odds, her parents were understandably more reserved with their celebration, but set their jaws, determined to be in that ten percent, to do whatever it took to give their baby a future. They are are now here, after 31 focal radiation treatments reduced the tumor's density and partially reversed her paralysis, for intense chemo followed by a stem cell transplant. The stem cells have already been harvested, her body shocked into creating millions of them by her first round of induction chemo. In the meantime, when they are not in the hospital they are staying at Brent's Place, a home away from home for critically immune-compromised children and their families. Her story has affected me deeply because, like Daniel was at 21 months, she is the only baby her parents have after having waited until they had been married for close to a decade. She is her grandparent's only grandbaby so far on both sides, utterly adored as the pint-sized ray of sunshine in her predominantly adult world. She is their whole world. And she is fierce. She talks a mile a minute in her single-word observations, as cute and sassy as can be, sidling up to people in the hallways and surprising them with unexpected "Hi!", then prancing away in her little wheeled walker, pushing herself off with her still slightly lagging left leg. While Daniel's induction steroids made him just want to sit, eat and cry/scream at us, they turned her into a vicious little biter. Which is actually incredibly adorable as far as 'roid babies go, indicating the sort of fire that hides behind her impish little grin. If anyone can beat the ten-to-one odds stacked against her, she can. Even pint sized, first impressions are that she is not one to simply accept things that don't suit her. And being sick, seeing double, dragging her left side doesn't suit her one bit. After this stay she will begin her stem cell transplant, so anytime she gets a fever she will have to be in 7 east as a transplant patient and we won't run into them anymore. Her mom is going to have to experience all the restrictions we don't need to, with our easier diagnosis that doesn't require a stem cell or bone marrow transplant unless a relapse should happen. This means her inpatient time must be spent in her room or in the small closet of the BMT playroom, isolated from any potential bacteria or virus. The restrictions are so extreme her mom is not allowed to even eat in her room. A list of exactly six potential visitors can be submitted upon arrival, and that list cannot change during the duration of her treatment. For the parent of a 21 month old who spends all day nearly every day while inpatient by herself here with her baby while dad works, these restrictions are a huge sacrifice and a massive inconvenience for mama. But as with every parent of a child who has been diagnosed with a life-changing disease, after their world was shattered they've picked up the pieces the best they can and are playing the hand they've been dealt, knowing that every day with their child is a gift and although it isn't ideal, or even remotely fair, the present is what they are guaranteed. The future they believe they can and will have is still that- the future. It lies on the other end of a journey so long and painful the line between the chemo killing the cancer and killing the little person who's childhood the cancer has stolen is so razor thin that some children do not survive the treatments designed to save them. But anyone who meets her knows the amount of determination in that tiny face will move mountains.

And this is Simone. You've met her before. Three weeks ago, she hit the end of her intense fourteen months of chemo. She was diagnosed at 10 months with MLL-r, which is a mixed lineage leukemia, a much more tricky type to treat than Daniel's by-now straighforward, run of the mill Pre-B ALL. She started Maintenance, which is the longest, but gentlest portion of the leukemia regimen, following the induction and consolidation phases. No more constant close monitoring. Occasional IV chemo and ongoing oral chemo, but only monthly checkups instead of weekly. Then, inexplicably, she started running a fever. Bloodwork revealed her counts dropping. Her mom panicked, fearing a relapse, while they were admitted to start the standard round of antibiotics that is protocal with a fever and crashed counts as they waited for cultures to come back. Then they were put on isolation because she tested positive for c. Diff. And kept on isolation, even after she was no longer testing positive, per hospital protocal, for almost a week as they waited for her ANC to climb back up high enough to go home. It never did, so finally, since both Simone and her mom were about to lose their minds, her doctors sent her home with lots of cautions and precautions. This was during our last stay. This time, we are in the same room they went nuts in with worry and cabin fever for nine days. The day we got here this time, Simone's mom finally begged hard enough that her doctor gave in and, instead of waiting four to five weeks to do a bone marrow aspirate and biopsy, they did it at three weeks. And her mom was right. She had relapsed. 

Her odds of surviving this cancer for the next five years was about 33-45%. Now that she has relapsed, her odds are down to 10-20%. But, after a day of allowing themselves to be crushed, they have rallied. Found the only two children's hospitals that are doing T cell trials on infant-diagnosed leukemia. This is a new protocal where they harvest T cells, which are immune fighting cells, genetically alter them to attack the diseased B cells, and reintroduce them into her bloodstream. If that fails, they will do a bone marrow transplant. They won't stop fighting for their baby, and Simone seems to be completely unaware that anything other than normal life is happening to her. Her big sister, a preteen, is far more aware of the disruption to their lives and her parent's inevitably divided attention. 

This is something I don't have to deal with, since Daniel's sibling is an infant. But it is a common, almost unavoidable thread with the families of older kids I have met here, the healthy siblings being irrationally jealous of the sick one as the sick one demands so much of the parent's care and attention. Even as they know they are lucky to be the healthy one, it is a lonely place to be, simultaneously feeling the fear of losing a sibling and seeing a sibling receive special treatment due to a medical condition. The way I understand the timeline we are looking at, Alex will be three and a half when we end treatment, Daniel almost five and a half. There may be time for sibling dischord over this yet. But not nearly as severe as it could be through these most intense first nine months. 

And Daniel's evening labs just came back. The methotrexate in his blood is .12, it needed to be .10 for us to go home tonight. So, so close. Sigh. Guess we're here until tomorrow morning at the earliest. In the last ten hours, it has come down from .19 to .12. Two tenths of a percent too high makes the difference between another night sleeping in a hospital recliner beside a beeping IV pump, and a blissful night in our own bed. Grrr. But not too loud of a grrr. Because even as I grrr, all the ways we are fortunate flash through my head. Almost everyone I meet here is currently sleeping in their own beds less than we are. Some have not for months, and will not for many, many more.

But from a child's perspective, this is like any other fun place where they can have sleepovers with their parents and order food from a menu. Albeit food that, when received, they will only pick at if they touch at all, thanks to chemo wrecking their taste bugs and destroying their appetite. They get to ride in elevators (when not on isolation),play with "new" toys, and play with other kids their own age, most of whom share the same minimalist hairstyle, the same messed up sleep schedule where they want to be out walking the halls long after their bedtime and up long before parents are prepared to be awake, ready to resume hall patrol. They're in a club, of sorts. Everywhere else, they are weird. Here they are normal. Not that normal matters to a two year old. But it does to his parents, who sometimes feel bullied by the universe until they come here to be reminded that as far as these things go, they may not be the jocks or the cheerleaders, but they aren't exactly duct taped to the flagpole, either. 

Notes from the trenches

A few things have changed for me since that fateful April day we first heard the words "this may be something like cancer". Here is a partial list.

I cannot say things like "my kids are driving me nuts" without immediately feeling I should take it back. And then getting a little weak in the knees knowing what a privilege it is to raise children who have the ability to do so.

I cannot indulge in self pity without the acute knowlege that as far as cancers go, millions would kill to be us. Parents who hear the words "your child has leukemia" arm themselves to fight and worry about the future. Parents who hear "your child has an untreatable (degenerative disease, tumor, condition) know the odds of their child having a future is stacked against them.

I add a mental footnote to every plan that involves the future.*

 *If. *If this disease does what it is supposed to. *If there isn't a relapse. *If (unnamed, sinister posibility).

The things I thought I would feel, should my child ever be diagnosed with something that would kill him if not successfully treated, I don't. I thought I would feel a lot more despair, fear, anxiety. Instead, I feel a mix of awe at our good fortune of having the option of treatment and helpless anger at the assault on Daniel's innocence and the utter lack of reason in a child getting cancer. The anger under the surface of every lighthearted conversation is still surprising to me. As is the way these two seemingly opposing emotions fit together almost seamlessly with no apparent acknowledgement of each other. Like a couple married for sixty years who are as familiar with each other's movements as their own, but yet somehow manage to go for weeks without noticing each other's new haircut.

I don't think I believe everything happens for a reason. Believing this means believing an innocent, undeserving child is paying a ridiculous price in suffering for some obscure scheme to come to fruition. Believing this raises questions I can't deal with. Nor can I deal with the dissonance it creates in me to believe that a child might be expendable collateral damage in some grand project of personal or societal betterment. It is a far easier thing to accept that there is no question, no reason, a cell simply became disrupted and divided abnormally, and so did it's subsequent generations, and here we are after those cells crowded out the healthy ones. It didn't happen to us for a reason, something worse didn't happen to someone else for a reason. It just is. Time and chance. And now we deal with the raw deal Daniel got.

I feel simultaneously more connected and more isolated than before. People have reached out to us from the most unexpected places, people we have driften apart from and not spoken to in years. Friends I used to be in almost daily contact with rarely call me with random things they consider to be petty compared to what I'm dealing with. When I ask friends how their lives are going, before they tell me of daily frustrations, they qualify them through the lens of Daniel's cancer and downplay them before relating them to me. As much as I understand the daily grind of the small problems women commiserate about and help each other through, sometimes the thought does come unbidden that to have annoyances be my biggest worry would be luxury. But I miss mundane. Mundane makes me feel normal.

Sometimes I realize I have responded to something stressful with the sort of patience I wish I had. Sometimes I realize I have responded to something with love and empathy that actually merited banging my head against a wall. And sometimes my BS meter pegs out and I walk away. Anger or frustration over situations of daily life has become tedious to accomodate. Sometimes the high road, or rather the emotional bypass, while enabling less than ideal situations to continue and less effective for avoiding future repeat conflict, is just easier. 

Time in hospitals moves differently. In the lack of stimulation, time sometimes flows by unnoticed. In the same way pre-child me used to love long, sensory-deprived runs and bike rides after dark because they seemed to go by faster without landmarks to mark progress, suddenly I notice the sun has dropped behind the mountains from our seventh floor window and I have no idea what we did all day. We live in the cubicle that is our room, our daily routines shrunk down to an approximately 12x20 room dominated by an IV pole, and sometimes, time inexplicably shrinks as well while below us on Colfax Avenue the traffic moves, the world turns, the tiny people live their lives.

And the practical stuff. 

We've learned to shower in the morning, as early as possible, to experience warm water on 7 west. (7 east has abundant hot, or at least warm water, which somewhat compensates for the added restrictions over there.) 

We always order the maximum allowable food from the room service menu. Someone will eventually eat it, if not the patient. If you don't have an extra package of crackers hidden in a drawer, you may end up eating your own face in a bored moment.

When one hits the call light, it can take a long time for someone to show up, but foul up the bathroom that has no fan in the small space four people live and experience bodily functions in, and within seconds the room will be full of nurses, doctors, child life specialists, social workers, and even a housekeeper or two. I don't know how this works so efficiently. I have decided that in the rare event of a code situation, the effects of yesterday's broccoli will probably be more effective at generating a quick response than hitting the blue code button on the wall. Truth. 

Sleeping in hospitals is like camping- only your first night here is sleepless. After that, the exhaustion pushes you into slumber no matter what is going on in your room or outside your door. In this way, multi-day stays are best. The longer you stay, the better you sleep. Although somehow, you still manage to look like a strung out, greasy-headed druggie with big red veins popping out of the whites of the eyes and the inability to form coherent sentences. I hit the call light to report a beeping pump with a readout saying "Infusion complete". When the disembodied voice through the speaker asked if it could help me, I asked it to tell our nurse that our confusion was complete. Clearly, my mouth knows my brain better than I do and says what's actually on my mind.