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. 

Blessed, but sometimes cursing.

Hello, dear ones. I've got a few minutes before I fall asleep to tap out a little update, and plan to keep it brief. I've just spent the last hour and a half rolling back and forth between two babies as they nurse frantically, fall asleep, and then awake just enough to fight, literally tooth and nail, to keep from losing their boob while the other one wakes up and notices his own boob has up and rolled away again. My usual trick is lying on my back, tilted toward Daniel, my arm flung out on his pillow, his head on my shoulder and his hand pulling his "own" breast (because let's face it, they aren't mine anymore) to his face, and my other arm wrapped around Alex, lying on his tummy on my uphill side, draped over me with arms and legs dangling, his face smashed into "his" breast. This is a good position to bounce out all the extra air Alex swallows in his enthusiasm using my only available hand. Sometimes his little fists slip off of me and shoot down right into Daniel's face, which causes Daniel to shove Alex away from him by placing the palm of his hand on Alex's face and pushing, which leads to Alex sputtering in indignant disbelief, then letting loose a with frustrated squeal and grabbing for whatever he can get his hands on to keep from getting dismounted against his will. And then, with Alex yelling and thrashing, Daniel often starts kicking and grabbing as well. I have seen this struggle play out in litters of barn kittens time and again. I feel almost exactly like an annoyed mama cat, lying there in the dark with my ears laid back and an irritated twitch in my tail as the nursing litter struggles on top of me. But then they finally fall asleep, milk-drunk, with the last mouthful unswallowed and dribbling out of their cheeks, and I gently roll them off of me, then lie there listening to their soft breaths, lay my hands on their chests to feel their tiny, quick heartbeats, and fall deeply, terrifyingly in love. 

It has been a long week since we left the hospital. I somehow missed the memo that if side effects were to hit from Daniel's high-dose methotrexate infusion, they would not manifest for 3-6 days after the infusion. I so smugly came home from the hospital reporting no major side effects, aside from a diminished appetite and some nausea. But several days later, the redness around his mouth turned into a full-on inflammed rash, sores developed in his mouth and throat so badly he all but refused to swallow, which meant at night his saliva ran out of his mouth and down his cheeks, burning his skin. Everywhere adhesive had touched his skin, days earlier, blistered up in a painful, itching delayed reaction. His voice turned hoarse from swelling due to the sores, and he took to digging at his skin, obsessively scratching his arms, legs, back, and scalp. I gave him Benedryl, which controlled the itching on his body where there was no visible rash, but anywhere the rash persisted, he dug at, leaving oozing gouges in his skin. On the day it was the worst, he kept disappearing and I kept finding him tucked into his bed, not asleep, but curled up in a miserable ball, only his eyes moving to follow me. All I wanted to do was curl up around him, draw him close and hold him tightly, but Alex would not hear of not being held, and in a classic case of the squeaky wheel getting the grease, I spent the day all but ignoring Daniel as Alex demanded my attention. When Alex finally napped, I had a bit of a public meltdown, posted on Facebook along with a picture of Daniel's face and chest, covered in rash and reaction to the tegaderm and adhesives used to cover his port access several days prior, while in the hospital. This doesn't show the sores on the back of his scalp, and the burn on his lower back from the Tegaderm that held down the glob of numbing cream on his lower back, prior to his lumbar puncture. I have to admit, I was silently cursing a good part of that day, angry. So angry. Furious he has to go through this. I lost the positive perspective I generally try to keep so I don't have to go to all the work to put myself back together after I lose it. I was livid over the unfairness of his suffering. But instead of tears, which are usually my go-to in situations where I am feeling helplessly angry, I was beyond tears. I just wanted to throw things and use strong language. Which I did use...in whispers as I did dishes in a very businesslike manner while Alex sat in the carrier on my back, innocently cooing at the very interesting world from his elevated vantage point.

Honorary aunties Christina and Lisa actually drove all the way up to Loveland from downtown Denver that evening, having witnessed my meltdown, to bring dinner, wine, various other goodies, and Benedryl anti-itch spray. The spray has proven to be wonderful, I have been rubbing it on his head, especially the back of his scalp, to keep him from digging at the scabs that formed from his obsessive scratching. While I felt foolish for my meltdown by the time they arrived, I hated to admit how good it felt to see other adults, have an adult conversation, and place Alex in another adult's arms for a few hours. Daniel slept on the recliner, drooling down the vinyl, sweaty skin sticking to it, and at one point, shifted and faceplanted off of it onto the floor, but he did not want to be carried to bed, so I left him there until he was sleeping soundly enough to put a diaper on him and put him in his own bed wearing jammies from Aunt Mary, with his plush Curious George from Alperts, and his green and brown hand-crocheted blanket from Aunt Marci. I love that his bedtime routine is all about items that, in his most vulnerable moments, represent the love of his village.

By now, the blistered skin that was affected by the adhesives has dried to dark brown and begun to peel off, and the bumps he scratched the tops off of are also scabbed over and drying out. I am almost beside myself thinking that we have to go back to the hospital in six days to do it all again. As it turned out, the hospital stay was a picnic compared to the after-effects of the chemo. 

Bobby came back early from Wyoming, where he had gone after finally getting back from North Dakota. Something must have happened to the three months of work that was lined out up there, because suddenly all of the trucks got either sent home or sent to other oilfields. We are still trying to figure out what our next move should be. As of this morning, he got dispatched on a local cement haul, which came with the offer that it could be a regular, dedicated run for the next few months if he was interested in not quitting. He could manage at least two nights home per week. While this is an improvement, it is not exactly the solution we have been looking for. Daniel is starting to be acutely aware when his dad is gone for long periods of time, and the stress of witnessing our stress over an erratic schedule, not to mention never being able to count on seeing his dad, affects him visibly sometimes. He doesn't need to live with feelings of abandonment, and I cannot keep him from feeling them. It breaks my heart to see him searching the house and yard for Bobby when he isn't here. He doesn't have the emotional maturity to logically process his feelings of abandonment. And this isn't helped by the fact that when it is just me and the babies here, my attention is always divided unevenly, with Alex demanding more of it. 

But this week wasn't all bad. We spent three days this week at the park, playing in the splash park, digging in the sand, wading in the river. My friend Shelby, who lives in Greeley, drove over two days in a row to let our boys play together. We spent two whole afternoons in the shade of a footbridge beside a stream, letting the boys coat their wet bodies in sand as we held their baby brothers, hers three months and mine four months old, and relaxed as much as was possible with toddlers and running water in the same place at the same time. 

We had another reminder of how fortunate we are to be insured when our insurance statement came in the mail. It turns out, the Erwinia shots in Daniel's thighs to replace the PEG-aspariginase IV infusion he reacted to are not exactly pocket change. Each shot is worth about $17,000. That's about $34,000/dose, since each dose is two shots, one in each thigh. The total for two weeks of these shots was $209,500 and change. To say we felt a little weak in the knees when we got that statement and realized we would not be paying it out of pocket is an understatement. Granted, apparently even the insurance company must've been a little shocked, because we maxed out and overshot our allowance by about eight hundred dollars. But that actually feels like pocket change compared to what it could have been, had we given into our temptation to drop our insurance premiums before Daniel's diagnosis to ease the monthly budget. Since we will be doing two more rounds (a total of twelve more doses, or twenty four more $17,000 shots), our patient responsibility will hit about $3,200, but then again, maybe it won't. Because by the next two rounds, Daniel's secondary Medicaid coverage should be in effect for just such things. And just today, a check from some of our village arrived in the mail that will help cover our self-pay. It is so humbling to receive help like this, and so overwhelming. This is something we might not have automatically done for others before Daniel's diagnosis, just write a check for a loved one who was dealing with an extra bitter dose of life. The fact that people have done so for us rips our hearts out, in such an affirming way. It is hard to articulate the feelings of opening an envelope filled with such love. Inevitably, an envelope that seems to arrive at the same time as our need, and somehow, we skate through each month without running too grossly over our budget. We are literally being carried, and it feels...helpless, humbling, tender, hopeful, sad, embarrassing, healing, and deeply loved. 

But back to the finances of cancer. Our insurance payouts have broken a half-mil. Our little darling is now worth over $606,000. We are so blessed by the fact that we are insured. We were born in a country and to a life where it was possible. We are not trying to treat a toddler with high-risk pre-B cell acute lymphoblastic leukemia while having to travel hours over unpaved roads to a clinic in some impoverished area where insurance is unheard of and our only asset is a family cow, or something. Nor are we dealing with multiple diagnoses, such as HIV or tuberculosis, and we have easy, immediate access to plentiful, clean water and safe food when his counts are dangerously low. So many cannot say the same. 

Optimist, pessimist, realist

Hello! We finally passed, and passed really well, to start our next round of chemo. ANC was 2,400. This stay has been defined by the continuation of the potty learning we were so into at home- we've lived pantsless for the last week or so, and saw no need to change that in the hospital. And Daniel has not had any major ill-effects from his first high dose methotrexate infusion so far, so whoop to that! It was an adventure potty learning while receiving fluids at 70 ml/hr- with recieving fluids in addition to frequent nursing, he rarely went a half hour between potties. And with a toddler's body-awareness, he rarely admitted needing to go until he really needed to go, so we hung pretty close to the potty chair. When we did leave the room to walk the halls, we either slapped a diaper on him or carried the urinal with us. And this is where pediatrics beats the pants off of normal, grown-up health care. (See what I did there?) If you weigh 28 lbs and are 31 inches tall, you can roam the hospital halls dragging your IV pole wearing only your shirt and tighty-whities and nobody blinks an eye. You can spend your time lounging around in a shirt and nothing else with your weiner wrapped around your thumb, and the nurses don't back quickly out of the room and call for a psych evaluation.

This picture is such a good one for contrasting how far we have come in four months. At the end of May, he still spent entire days in the hospital bed and cried when someone suggested he do anything. Literally anything. All he wanted to do was watch TV and maybe, just maybe, drive cars on his bed. As long as he didn't have to move too much. And the entire time his port was accessed, he clamped his head against that shoulder. And now? This pretty much sums it up. Pantsless, climbing on furniture, dragging the IV pole around and barely noticing the tubes hanging from him. That picture makes me so incredibly happy when I compare it to what he spent months doing:

We only had one potty accident the entire three days. And this was after his chemo was mostly cleared. But it was nice to be able to get away from the diapers when his urine was most caustic. As it is, his diaper area survived the chemo without developing sores, but his face was not quite so lucky. Wherever he drooled overnight has developed a painful-looking rash. Actually, my nipple on "his" side also developed a chronic stinging sensation and looked a little irritated after spending so much time in his mouth. I googled it to see if this was a "thing", and if it could possible affect Alex, but of course, as with every "breastfeeding a toddler through chemotherapy" question I have, the internet thinks I'm the one with cancer. I know there are moms out there doing this. And there have to even be some doing it while also breastfeeding a younger sibling. They just aren't posting or blogging about it, apparently, so even with the wealth of information accesible through a device that fits in my pocket, I'm still bumbling my way through a lot of this blind. He also developed some minor blood in his urine, which indicates irritation some other place in his GI tract. Not so unusual, but also not exactly ideal. Thankfully, his platelets are nice and high. His body has the ability to heal itself right now, at the start of this latest phase before our counts get knocked back again. 

My dad accompanied us to the clinic on Wednesday, entertaining Daniel while we waited an hour past our scheduled procedure time by being extra loud and destructive with him. If you've been in the main lobby of Children's Hospital, you know the "ball machine". It is a glass-enclosed mechanical wonder, a Rube Goldburg-esqe machine that does not perform any particular task except keep a number of small plastic balls moving circuitously through it, powered by one small motor carrying the balls to the top to begin their gravity-powered descent through a maze of carefully calculated bounces, tracks, levers, and funnels. Daniel, of course, is obsessed. He will literally never leave the display of his own free will. I have been known to get him from the elevators in the back of the lobby to the front door via a longer route through back hallways on days we do not have time to accomodate endless wonder, curtesy of the ball machine. 

So, the ball machine. They were servicing it when my dad brought Daniel up to the clinic while I took Andy, who would wait in the car for a ride to Kansas, potty on a patch of grass outside. When they stopped in the atrium to experience the wonder that was the now-opened-up ball machine, Daniel was presented with the most mind-blowing gift by one of the technicians- one of the mystical, magical balls heretofore only viewable through the glass. He accepted this bestowment with the solemn acknowledgement of the honor and responsibility that was now his as the owner of one of the core components of the ball machine, and held the treasured talisman carefully in his little fist. Once in the clinic room, after I had joined them, the two "kids" conspired to arrange their own version of the ball machine by placing the ball in the back of a small plastic dump truck on the cot, then dumping it out in just such a way the ball would bounce off the linoleum tile floor, ding loudly against the metal desk leg, then ricochet between chair legs until it wound up in some corner. And then they retrieved it to do it again. I cringed every time it thwacked a wall, knowing how well the noise was carrying to whoever was below us and beside us in other rooms, but being the only adult worried about such things, I was outnumbered. When the doctors finally came to get us for Daniel's lumbar puncture, he held the ball as grandpa held him, and when the propofol kicked in and he fell asleep, the ball rolled out of his hand, bouncing across the procedure room floor and under some monitoring equipment. Now, normally, the second Daniel is asleep, jaded by so many of these heartbreaking moments by now, we give him a quick kiss for luck and scurry out of the room while the door closes behind us, but grandpa Kevin lingered with the kisses, then after reluctantly turning loose of Daniel's limp little body, hit the deck and went scrambling after the ball on his hands and knees, past the ankles of the doctors, nurses and anesthesiologist, rummaged around in the tangle of cords under the computer stand, and finally emerged triumphant with the ball while the staff of the procedure room had no choice but to begin prepping Daniel for the procedure, ball drama notwithstanding. I have been trying to get a decent video of the scenario that is Daniel going under anesthesia for a while, and unaware of the ball drama that was to come, was surreptitiously videoing it on my cell phone. So yes. I have the whole thing on video. Minus my cringing in embarassment behind the camera, of course. It's funny now. I'm so thankful, again, for the fluid process that is pediatrics and the flexibility of those in the profession. That particular procedure room has, to hear tell, seen everything from convenient tooth extractions to haircuts on it's anesthetized occupants. One scrambling grandpa ball retrieval, not a big deal.

From the recovery room, we were shown to our room on 7 west, where we settled in for the next three days. Grandpa carried up our suitcases, potty chair, and toys for the next three days, then sneaked out while Daniel was preoccupied to avoid bye-bye tears. Late that night, Bobby finally walked in after having not seen his kiddos, outside of video chat, for two weeks. Daniel, with the aversion to wild displays of affection he inherited from his dad, tried hard but failed to suppress his face-splitting grin when he saw him. The two played hard for the next several hours. It was so exciting being all together again, we were still up late that night when the cafeteria closed and the 24/7 Grill expanded it's menu- the one big reward for being night owls in the hospital. During the day, when the cafeteria is open, the typical cafeteria selections apply. Not-so-fresh hamburgers, french fries, onion rings, pizza by the slice, salad bar. But after 10pm, the Real Food comes out. You'll wait a long time, but when you get your food, it really is death by deliciousness. That is, if the clogged arteries don't get you first. Our selection that night was loaded nachos. A divided tray plate so stacked with chips, cheese sauce, shredded cheese, bacon, green onions, and pickled jalepeños that it won't close, and weighs in at 4 lbs (the person ahead of me in the food line claimed to have put it on the scale once) of pure gut-punishing calorie overload. We suffered the gastrointestinal aftermath of our late night calorie dalliance for two days of being closed in a hospital room together with no fan in the bathroom. Totally worth it.

We shared a hall with some familiar faces this time. Simone was back, but unfortunately she was on isolation. Several other familiar faces were also there, plus we made another new friend, a little girl with a much more difficult cancer than Daniel's. As faces become more familiar, I am starting to become much more emotionally invested in the precious little warriors. I am still a virgin as far as witnessing one of them lose ground in their personal battles. So far, I am shielded from the heart-splitting agony that is a friend and fellow parent witnessing a child, with whom they have spent months if not years in the hospital, who is nearing the end of the most grueling fight of their lives and seeing hope of a normal life returning, relapsing. So far, this whole treatment process has been little more than a massive inconvenience for us. Mostly because I refuse to visit any other outcome. And my lack of experience, in our mere four months of being involved in this world, affords me that luxury. But little by little, I am beginning to see the signs that somewhere deep inside, I must be acknowledging the possibility of a less than ideal outcome. I see it when I realize I have thousands of pictures and videos on my phone of the most mundane moments, all characterized by one common thread- the normalcy of everyday life with a happy, innocent child. When Daniel was first diagnosed and it seemed impossible that he would ever walk, talk or smile again, I watched and rewatched three short video clips of him toddling around in the kitchen, humming a little made-up tune and "helping" me unload the diswasher, and every time I watched them, they simultaneously ripped my heart out and made me smile, grateful for having had the honor to spend such a momentously unremarkable moment with him, just being his mother. And now that those moments of perfect unremarkability are happening again, and he is once again filling the frame of my camera with the normalcy of toddlerhood, I can't stop recording it. And I can't bring myself to delete even the bad pictures or videos, the unfocused ones, the ones he is only in peripherally, or the ones he was supposed to perform for and didn't. Because, somewhere deep down, is this horrible suggestion that there is a chance. A small one, but still a chance, that these captured moments will someday be all I have left of this beautiful inconvenient time. Then I think, but isn't it time that already does that? These moments are passing us by no matter what our future holds. If cancer doesn't steal our baby, time will. Yes, if it's time that takes him, time will replace our baby with a beautiful adult someday, but these moments, these, right now, are so sweet because they are so fleeting. 

And then I realize Alex is not immune either. To be a parent, or more broadly, to wholeheartedly love, is to give your heart completely to something you have no guarantee won't be ripped from you without fate giving even the smallest nod to the magnitude of your loss. One could go crazy, lying awake at night with the thought that we have no promise we will all still be breathing by tomorrow. And from that perspective, does it even matter that one of us has a condition that is potentially life-threatening, while we all have the possibilty of falling victim to the many, many things that could rip our family, which is everything to us, apart? And then I wonder if thinking such thoughts makes me a pessimist, or merely a realist. 

So I guess I have to admit by now that the fear of relapse, of not being cured, of the reality that "long term survival" is a mere five years, is growing roots in the dark places, even as I confidently walk in the sunshine that is a good prognosis. It is affecting me deeply, knowing a handful of children who, in spite of being loved in a deeper, more complete, more dignifying way than most kids can even dream of, won't live until their next birthday, let alone grow up to be the kind of deeply caring adults such a childhood would make them. As I fight down the panic that comes from knowingly dumping substances into Daniel's body so toxic that a known occasional side effect is secondary cancers more deadly than the one he has now, knowing the alternative is no treatment, a route which, had we taken, would most likely have us mourning his death right now instead of celebrating his improvement, I also know that I have the luxury of panicking over worries like potential organ damage. I have the luxury of worrying about the adult effects of childhood cancer that a full two-thirds of childhood cancer survivors experience- infertility, relapse, secondary cancer. I have the luxury of walking, with his doctors, the fine line between risk and reward- hoping and calculating that his treatments will benefit him more than they will harm him. If he were terminal, we could treat his symptoms with no thought as to future effects- we could waste those tiny organs. We could addict him to painkillers. But the very fact that we are treating him with a wary eye to his future is a luxury not everyone has. And for this I am humbled. Because there is no difference between us and the parents who are not at Children's Hospital because they no longer have a child needing treatment. There is no reason they should not be us, or we should not be them. It could have been us, but for some inexplicable reason, it isn't. We are all good, and bad, generous, and selfish, and cancer doesn't care how deserving or undeserving we are. Some of us just got lucky, and are so deeply grateful for this, that every waking moment, we vow to rejoice over the things normal kids do that make their parents crazy. 

There is nothing fair about childhood illness. But one shortfall is more egregious than all the rest. And that is the amount of money given to researching childhood cancer. Cures for childhood cancers are not medicine's top priority. This is hard to imagine, given that the poster child for all cancers is often literally a child on a poster. With a bald head and haunting eyes, she invites us to donate to cancer research, and donate we do.

But this. 

National Cancer Institute's funding for pediatric clinical trials is $26.4 million. Funding for AIDS research is $254 million, and breast cancer is $584 million. Tough break for the kid on the poster. All she's really doing is tugging on our heartstrings so our donations can be repurposed toward adult cancer research. And although it is a broken record in the world of childhood cancer, it bears repeating: that is not okay.

It's all cake.

Hello and welcome! You know how sometimes things that seem necessary and needed just turn out to not be as important as you thought? It's like birthday cake. I mean, cake is tasty and all. Eat it by itself and it's fairly delicious. But I think most of us can agree (well, those of us who are still eight year olds on the inside) that the real reason birthday cake is so delicious is the death-by-sugar buttercream frosting. And the ice cream. Until, of course, you don't feel so hot. Wait, where was I going with this? Oh right. So if you take a second look, you really are getting a whole lot of unnecessary calories from the cake when all you really want is the ice cream and the coma-inducing frosting. And this is a metaphor for life. I am asking myself, as we plot our next move, just what is the cake? What can we shave off and still keep the best of the good stuff? 

Is it our third vehicle? But then which one do we get rid of- the car Bobby drives every day, the truck we won't be able to replace for the same money when we need it, or the family tank that hauls us all down to the hospital on a regular basis? Is it the house we want to buy? Do we need to buy? No. But $80,000 lost in rent over the next five years is a depressing thought. The dog. It's definitely the dog. Dogfood is expensive, he limits us in our rental options and forces us to have to pay more to get a pet friendly rental...yeah, the dog is the cake. But you don't just offload the family pet when things get tough. And this particular one is our firstborn. He was our child before our children. And I don't want my children to grow up without a pet. Especially a dog. Vacations would be the cake...if we took them. So would movies...if we went to them. Or dining out...if we did that. Or buying nice organic food...if that hadn't fallen by the wayside. Or cable TV...if we had it. Or gym memberships...yeah, excuse me while I stop laughing. We could sell our mountain bikes, but they are really not worth anything anymore- they are worth more to us in dreams of riding them again someday than the money they would fetch. And our road bikes were never worth much to begin with. And ditto our skis- they are five year old models by now, even though they are in pristine shape. I would think coffee would not need to be a daily expense, those little nine dollar bags of beans add right up, but Bobby seems to think it is necessary for continued functioning. Well. That does it. Clearly, we need to sell the children. 

Okay. Confession. My clumsy cake metaphor is influenced by the fact that I am trying to justify the fact that I just ate a bowl of ice cream. With a large dab of buttercream frosting on top. And now I don't feel so hot. The eyes are having a little trouble focusing as the brain whirs and threatens to overheat, my foot bounces manically and I feel all twitchy. This is why sugar is bad, kids. I am feeling the need to self medicate my exhaustion away instead of the obvious fix, which would be sleep. But it is just so fantastic to have the house to myself after the babies sleep, I end up doing all sorts of crazy projects that get me all high on creativity and then suddenly the clock says 3am and I know babies will be waking up at 7...

It has been a heckuva week. It started out with house hunting, Bobby and I looked at a few houses for sale last Saturday and Sunday. Then his phone rang and dispatch sent him to North Dakota for a load of sand to be delivered to Rock Springs, Wyoming. So on Monday, he packed one change of clothes, climbed into a back-up truck because his was in the shop, and bounced ten hours up to Williston while I continued looking at houses. It was a little frustrating having him leave for several days right then, because we had thought maybe we could have a little family time before he left on the 20th for three months for a job in Gillette, Wyoming, about four hours away. He was on his way back, set to arrive home Wednesday night, I put Daniel down for a late nap so he could stay up late to see Daddy when he walked in because he had been asking about him for three days, when dispatch decided to send him back for another load. And under somewhat murky circumstances. The dispatcher seemed unsure, had to ask higher ups if he was really supposed to go back to North Dakota, then they deflected his questions about his load header, usually sent promptly. Sure enough, when he arrived, he still had no load header, and there was no sand for him to haul back. No big deal, said dispatch, just sit there until we find some sand. Maybe we'll have a load for you to haul back Monday. In the meantime, maybe there will be a few local loads you can haul. 

No big deal. We should have known. Every time we attempt to make plans, work interferes. We have had days he was available to work turn into days, turn into weeks off in the last ten months, but we have had only a handful of days off we have known about in advance. Like an actual handful- like five. For the last ten months, with the exception of one four day ski trip, we have lived our lives around the possibility of the phone ringing. This means we have not gone where there was no cell service, not even up the road into the mountains for more than a few hours, those sneaked in when he should have been sleeping, in the last ten months. Although apparently management thinks he is luxuriating, lounging about, enjoying a lovely, unexpected mancation at a truck yard in Williston, ND (who wouldn't love one of those?) in reality, he has been sitting in his truck, ready to go, on-call for 168 hours this week. And since he gets paid by the load, we can't help but do the math. If he were making an hourly wage, this on-duty time translates to $5.95/hour. Yep. You read that right. There comes a time when, even though a little money is better than no money, it is worth it to leap into the unknown rather than to stay where one is at. We almost made this leap two months ago, but there was just enough promise by said shrugging management that things would get better, we tightened our belts and stuck it out. But after this last week...nope. It's not okay. Not anymore. Even if they were paying well, by this point our respect for this particular company is so far gone, their lack of respect for their employees so obvious, that staying would cost us our self respect. Which, let's be honest here, is even something we could live without. We've done it before. It's amazing what a person can put up with for a little filthy lucre. Who needs self respect when one is making bank? But when bank dries up, along with the mutual respect, there's no reason to stay. We can average better $5.95/hr in a 120-168 hour work week almost anywhere. Not that we will ever try something so crazy again unless the alternative is literally dumpster diving and living under a bridge.

This little hiccup, barely meriting a minor shrug in management, completely derailed the few plans we were trying to make to spend a little time together before Bobby left us again for three months. And all it would have taken to salvage the screw-up was the acknowledgement by said management that trucks do not drive themselves, they are driven by humans who have lives and families outside of their work. We could have avoided him being stranded with one change of clothes, in a borrowed truck with no food, no microwave, no coffeepot, none of the conveniences necessary to live in ones truck for twelve days in North Dakota, not to mention the loss of time with a family he thought he was going to get to see at least a few days before we all split up again for three months. There have been screwups like this in the past, but none quite so colossal. Or so casually brushed aside. And with the Gillette job looming over our heads, the thought that he would be living in his truck away from his family for three entire months...(cue one, lone, tumbling straw. It drifts downward and lands softly on the pile already sitting atop the strained back of the groaning camel...who crumples to the ground, back broken.) Bobby, who, just to be clear, in no way resembles a camel except in metaphor and maybe ability to hold water if that water is hot and infused with strong coffee, called his supervisor and did what he should have done months ago- quit. Gave his two week's notice. Which was not a decision he made lightly, because with no employment history, our being preapproved for a mortgage flies out the window. We had to turn lose of our dream of no longer renting in order for him to be able to quit the job. He still has to sit and wait for the sand to become available to haul back to Rock Springs, maybe Tuesday. Which will get him home late Thursday. He is so frustrated he says he really wants quit again today, since it felt so good yesterday. But instead of quitting every few hours for cathartic effect, he is reminding himself that the countdown is on, and he will make a few bucks these last fourteen days before we need to deal with the fires this will create for us.

What will we do for, you know, money? Good question. We're working on it. Our one foray away from self employment has been nothing but an exercise in frustration and waiting for someone else, seemingly less motivated than us, to find our work. When one relies on someone else to provide their employment, this means that one has no options when someone else drops the ball. If we were self employed again, as we have been most of our adult lives, we would always have the option to diversify, shake the bushes, try to scare up some more work. (See how I didn't even put quotes around the word "adult"? Yeah, it still feels like we're playing at this whole being grown-ups thing, but nothing will make you feel your age like having no idea how you are going to feed, house, clothe and provide medical care to the small humans you managed to make on two particularly fun Crested Butte mountain biking trips.) 

So we are scheming. Several postings on Craigslist by painting companies looking for help makes us think perhaps the house painting scene would be hospitable to another company starting up in town. Low overhead, just a guy with a sprayer, ladders and tools. It's not like we need to go big right away. Even one decent job a month would provide the same income trucking has been providing. It is surprising how low one's standards and expectations can be when one knows one is possibly just jumping from frying pan to fire. Me with my metaphors today, huh? 

I have been scheming, as well. Obviously my main job is being mom to these small humans, but what could I do at night or in the evenings, if Bobby actually had a job with scheduled, predictable home time? How could I get a degree while also being full time mommy? Could I write/make/sell/market/grow/sew something to supplement our income? 

As I was mulling this over the other night after I finally had the babies in bed, I got out my drawing pad and pencils, something I have not done in years. I have painted a few times in the last five years, but haven't touched my drawing pencils. My last memory of drawing was getting mad at a line that just wouldnt come out right, stopping halfway through a picture, throwing down my pencils, going outside, and then just...carrying on with my life. Eventually my drawing pad got shoved behind a couch where it stayed for many years and my pencils got scattered and lost. I brought my drawing pad home with me from Kansas when we were there for the fair, and just the other day, spent a few bucks on new pencils, kneaded eraser, and rub sticks. Now I have an ally I did not have the last time I drew. I have my ipad, which I can leave a reference picture on. With just the swipe of a finger, I can zoom in so the problem area is the same size as the problem area on my drawing, and carefully, line by line, transfer the picture until it is exactly the same. I did not do this so much for the art of it, or the creativity, but because I was feeling a little sad that I cannot afford to do portraits of my babies right now. Even if we could afford the actual photo session, we could not afford the prints. But cell phone photos, I have by the hundreds, and if I cannot afford to get prints that look professional, what I can afford is a large piece of paper and a drawing as close to photo quality as I can make it. I'm excited and pleased with how they are turning out. I have one of Daniel and Alex, and one of Daniel holding his chemo duck (the stuffed duck with a "port" he got his first week in the hospital so he's not the only one in the family with tubes hanging out of his chest) so all I have left to do is one of Alex. Which I did today while holding him on one knee and letting him nurse, but I didn't like it. The light was weird in the photo and I tried to fix it in the drawing, but it turned out weird in the drawing as well. I took more photos of Alex this evening on the back patio when the late afternoon light softened. I'll try again another day. 

I decided to own the fact that he is sick in this picture. Other times in his life, he will be posing with soccer balls or skateboards or whatever he is into. At this time in his life, his cancer is consuming all of us. But I love the way, in the photo, and I hope I managed to capture it in the drawing, his eyes are merry and sparkling in spite of it. He is one of these people who smiles with his entire face, and the smile transforms him from the thoughtful old soul he usually is to a whole other person, the impish little devil he should be at two and a half.

I googled custom portraits online this morning, and was not discouraged by what I found. Some were amazing and some were...not. Seems like mine are maybe not exactly amazing, but if I do say so myself, they're not as bad as some that are being sold. Well, advertised. I don't know if sold. Maybe that's something I could do for a few extra bucks.

The other thing I have been working on while Bobby is gone is the last few steps to qualify Daniel for a Medicaid Waiver. This is supplemental Medicaid, secondary insurance for insured but medically fragile people who make (or who's caretakers make) enough money they don't qualify for Medicaid or Supplemental Security Income, but who are at real risk of losing the assets they do have due to a diagnosis. This is to keep homes from being foreclosed on, vehicles reposessed, etc, when ordinary people like us who are, for the most part, kinda-sorta "making it" suddenly get hit with high medical bills. This is another thing that is probably going to get complicated, because the medical financial aid programs available change depending on income levels, and we have a very fluctuating income level. It has already been complicated, and now that we don't have a job, if we suddenly drop below a certain income level, the fact that we are on it becomes problematic and legally complicated if we drop into a lower income bracket where another program is allotted to fill the need. But it is something we still jumped through the hoops to do because this current insurance policy ends in November, and since we changed states, we must now change policies, and most other policies start in January so we were facing a gap in coverage. Plus the supplemental Medicaid should now cover prescriptions. I am slowly stopping the hyperventilating I've been doing when I think about all the bills we could potentially get hit with. The biggest bills, we are learning, come from ambulance rides. Because they will use whatever service is available, regardless of who is in-network, we have had to pay half of every transfer so far. And transfers can run into thousands. Our last transfer, from north campus to main campus, the doctor on duty would not hear of us driving him ourselves in spite of the fact he was not critical. I only noticed as I was signing the release that I could have refused transfer. Next time, provided he isn't critical, that is what I will be doing. Although now, if we have Medicaid to pick up that bill, shoot. No worries. Right? For the first time, we are thinking we will be okay. Now that the panic is leaving, we realize it was there. A month or two ago, we'd have sworn we weren't too worried. And believed it ourselves. But now that we have a safety net, it's easier to see the worry we wouldn't let ourselves admit then. 

Daniel's hair has started growing back. It never completely left, actually. It just got so thin we cut it short so it was less reminiscent of a certain badly combed-over TV personality and presidential candidate. New down started growing in before the old, longer hairs all fell out. Personally, I can't wait for his shiny little boy hair to come back and for him to more closely resemble himself back when things were normal, but at the same time, his bald-ish head has created a narrative for us so we do not have to explain ourselves. This has been an ongoing theme for us (well, me. I can't speak for Bobby),  the feeling that we owe those around us an explanation when something about us does't fit a standard narrative. Which is more about owing ourselves relief from their judgement than it is about owing them anything. During induction, it was the fact that he was a tantrum throwing, overweight, inactive little monster. It was so uncomfortable to feel the waves of judgement, probably real, definitely imagined, radiating off those around us. And the almost perverse pleasure of seeing the judgement leave their faces if we bothered to change their assumed narrative to the correct one. The instant a stranger's view of him changed from entitled little sociopath to tiny hero fighting for his life was...good. Like a drink of ice water on a hot day. Like coming home after a week in the hospital. The stress melted away as we saw them suddenly see us for who we were instead of who they assumed we were. 

Now it is the fact that I hustle him away from other kids at the playground, that if I so much as hear a sneeze, I swoop in like a mama hen, brush him under my wing, and sidle away, looking around suspiciously for the culprit. I chase him with a big yellow tub of antibacterial wipes in public places, grabbing his hands away from surfaces, wiping down the ones he is inevitably going to touch, smearing his hands with antibacterial gel every few minutes, shrieking at him to get his fingers out of his mouth, don't lick that, that's not food. I look completely deranged. I look like a paranoid germaphobe, and I'm sure other moms are sitting there thinking, "sheesh, lady. Let your kid live a little. Helicopter parent, much? Creating lifelong phobias and psychoses, much? Poor kid. I bet she's judging me, too, for letting my kid run around licking doorknobs. Well, fine. She's gonna judge me, I'll judge her right back. And maybe tweet about it while I sit here to make myself feel better about having fed my kids donuts for breakfast." As if real-life social interaction isnt enough of a gauntlet to run already.  

Enter the bald head. Instant ah-hah. The unmistakeable clue that what you are seeing is a mom just like you, probably not crazy at all, who got thrown into crazy circumstances. Because the most easily recognizable statement cancer makes is that shiny, bald skull. Of all the things it does to a body, the one everyone fixates on is the most visible one. The dark circles under his eyes could be bad parenting allowing lack of sleep and donuts for breakfast. His clumsy, stumbling feet could be a developmental delay. But the bald head is a dead givaway. And immediately, the judgement leaves, and in it's place, usually an earnest attempt at understanding. 

And so it all comes down to the question of what kind of person are you? Do you march to your own drum? Do you live not caring that you are being misrepresented? Do you need the understanding and support of those around you, or do you feel it is none of their business? This is not the first time I have come up against this question, this unresolved part of my emotional landscape. Deaths of friends and family, my childhood that was not always placid, the emotional aftermath of three miscarriages have taught me I am not generally okay with people making up a narrative about me based on my temporarily wrecked appearance, I must give them clues to a more accurate one so I am free to deal with my own stuff, already freaking hard, without feeling the added weight of judgement. Apparently I do not do well at all with unjust judgement. And obviously, my son's cancer is all about me. Obviously.

Which is what it all really boils down to. His hair regrowing, and my complicated feelings about it, begs the question of who this is really about. I mean, he's two and a half, so it's hard to know if he feels different, or feels the need to seem the same as his peers. Probably not, at this point. He simply is, regardless of how he is viewed. Self aware he is not. His life is a series of experienced moments lived from a single perspective, promptly forgotten, never revisited, never analyzed. It is me, the adult, who acutely feels the need to conform, to narrate, to honor him, our family, and myself with accurate self-expression. This is probably why it is therapeutic for me to blog about it- my own narrative becomes the official one. Is this okay? Although I strive for objectivity, my feelings are often extremely subjective. This also begs the question...is it okay to make this about me? How far might I take it once I decide it can be about me? We all have our own needs within a family unit, and I struggle with seeing this as strictly Daniel's fight. I see him more as the battleground for our family's fight. I catch myself, all the time, saying things like "our chemo", "we got blood drawn", "we threw up in our carseat", "we had diarrhea running down our legs in the clinic". Which is kinda hilarious, when one ponders these statements literally. But when I think about it from Daniel's perspective, I wonder if I am robbing him of his ownership and his personhood. Or if absorbing him into our family unit is just the natural order of things when one is two. So far, he has seen no need to assert his own personhood in any major way, such as weaning himself, choosing to sleep in a different room than us, wishing to play alone. Maybe me seeing him more as an individual will come when he starts presenting himself as one. Which, now that I think of it, does happen in small ways already- feeding himself, the fact that he takes himself potty and is offended when I suggest he might need to go, his insistance on picking out his own clothes.

And on that note, I should run. Grandpa K is here holding babies, playing with Daniel, and working on my car, which waited until B left to decide to have the battery die every time I didn't drive it for a few hours. Grandpa accompanied us to the lab this morning for bloodwork, trying again to pass to start chemo on Wednesday. If "our" ANC is 750 or above, we will check into clinic first thing in the morning for a lumbar pucture, then stay for the next several days in the hospital getting our first high-dose methotrexate. New chemo treatments are nerve wracking. But this is the first time we have known in advance we will be in the hospital, which opens up a whole lot of possibilities as far as how prepared I can be to be gone. Right now, the carseat cover and straps are in the washing machine after our last vomit episode. Not returning to a hot car that smells like vomit after four days in the hospital? Priceless.