We are starting to hit our lasts. Our first last was our last doxorubicin infusion. Our second last was today, when he finished his last cyclophosphamide infusion. Our third and fourth lasts will be this month, when we have our last cytarabine and our last erwinia. Of course, we still have some firsts ahead of us, too...we start our first thioguanine tonight, and we have yet to experience oral methotrexate, which we will take during maintenance. 
I met a newly diagnosed family (because it is the family that is hit by the diagnosis, not just the diagnosee) today, and as we were talking, I was thinking about all the things I wish I could tell eight months ago me. I feel like I am finally getting this whole pediatric cancer world figured out just as we no longer need it so badly. Thank goodness, but also...I feel a little like I've earned a degree I won't be able to put to use. Hey. Nobody said it had to make sense.
So. Dearest bewildered, leaky, post-partum, milk-spraying, maternity pants wearing, unshowered, refusing to cry eight months ago me. Listen up. Because I'm about to drop some knowlege on you.
Take real pictures. Not just of the one time in twenty four hours you see your little darling grin a little, but of your faces, with your eyes that look kinda like the holes the dog leaves in the snow when he pees. And of your kid who looks like Jabba the Hut on meth. You aren't taking pictures to celebrate where you are now, you are taking them to celebrate where you will be. If you don't take them, your memories can't be trusted. You may not want to remember now, but you will. You can't measure your own strength if you don't remember how heavy the load was at this point. Although you think you could never forget, you will. Surprisingly quickly. 
Make friends whenever you can in the hospital. This guarantees several things- you will find people who have it so, so much worse than you do, you will feel like a whiny little amateur when indulging in your own pity party. You will find people who know ex. actly. what you are going through. You will realize that all sorts of people have sick kids, including people you would not normally be friends with. And then you will put that thought right out of your mind, because the kids are all that matter. You connect over the kids. You realize that some adults make it about the kids, and some make it about themselves, and you decide to always, always be the one who makes it about the kids. And inevitably, you will meet a family with a kid who is going to die. Once you become emotionally invested in a kid who won't grow up, everything else seems pretty manageable. Nothing about your living children is too big of an inconvenience. Making friends with people who have sick kids will be the most comforting and potentially devastating gift you can give yourself. But even if you end up wrecked and grieving with them, it's also a gift to see the world through the lense of a family whose world has crumbled. It's uncomfortable, but also, can cause such deep gratefulness for the gentle weight of an alive, if sick, child. For the times stuck in a hospital room that are also times spent together. For every "bad" day spent in their wonderful presence.
Take to the halls anytime you are not on isolation. Because you are only a cough away from being put on contact precautions at any time, and unable to leave your room. If you are not on isolation and counts are high enough and you have permission, go outside. Go eat in the cafeteria. Pretend to be normal. You can put an IV bag and pump on the wagons provided by the hospital and pull it pretty much everywhere on the campus.
Use plastic totes instead of suitcases. So much easier to store in the shelves in the patient rooms. Easy to wipe down.
There is no reason why you, the parent, cannot weigh diapers, record intake and output, draw up pee samples to send to the lab, get your own water, bathe your child yourself, make their bed with new linens daily...honestly, anything that doesn't require assistance or a four year degree plus special pediatric hem-onc training to do. The nurses pull double duty as your own personal waitstaff at the hospital's request as the hospital seeks high patient satisfaction and understands that even with stellar care, if a patient is feeling petty and put-upon they won't give good survey results, and it's tempting to think that, for $7,000/night, they can do just that...but seriously. They are there to do the stuff a parent isn't qualified to do. And it doesn't take a degree to run a gram scale and write down amounts on a whiteboard or keep a toddler from soaking his port access in the bathtub. Don't worry about overstepping. Just ask if there is any reason you can't do yourself whatever it is they are doing for you. There might be, but there might not be. The nurses are fair and wonderful people, but also stressed out humans who can't find the time to pump, if breastfeeding their own young, eat, or even pee sometimes.
Certain menu items come in bigger portion sizes by default, making it easier to stretch a child's tray to feed multiple people. Quesadillas. Sweet potatoes. Side chef salad. Mixed fruit smoothie. Milkshake late in the evening (it will arrive completely melted if you order it earlier in the day. Just one of those mysteries.) Cutie oranges instead of a banana, because oranges come in twos. Also, corn chips are your friend. Keep several unopened bags in your hospital tote. Because you can order refried beans, nacho cheese, and salsa from the kitchen, but not chips, at least not if your child is on a toddler diet. And chocolate. Or twizzlers. Or whatever your go-to stress food is. Keep it packed and ready to go. (Raisinettes, in my case.)
If anyone wonders what to get you for hospital creature comforts, tell them you would like a Yeti Cup. This is a not-exactly-cheap, but extremely insulated cup that will keep water ice-cold all night long. You can also make sure your hospital bag includes chapstick and vaseline (because the dry hospital air will actually crack the inside of your nostrils and it's gross to stick your chapstick up your nose), fingernail clippers, tape, and scissors (you'd be surprised how often you need scissors. Mostly for opening popsicles, but also for cutting medical tape and various other projects). And a non-hostile, somewhat silly laminated sign to tape to the outside of your hospital door to inform the staff of sleeping babies. This says, "We're really nice people and know you have a job to do, but on the other hand, if it can wait...." And then take the sign down as soon as naptime ends so they actually take it seriously. 
And last but not least, keep yo freaking laundry done! Because it is stressful enough waking up in the middle of the night to a raging fever and needing to pack and get out the door and into the emergency room in a hurry, without having to realize the only pants you have that are not crumpled in the laundry under a wet, stinky towel are three sizes too small, have a gaping hole in the butt, are missing the drawstring and fall off several times a day, or that even those poor excuses for clothing are dirty and you have no pants at all to wear, let alone pack for a week's stay in the hospital. Let's face it, you are going to get weird looks in the hospital sporting the fierce black pinstripe slacks you haven't worn in ten years, purple flip flops, and a shirt that has some name brand from your teenage preppy years in big letters across it, covered in paint splatters and about two inches short of meeting your pants. So not the way to be taken seriously as a parent on top of their child's medical needs.
Edit: my oncomom friend Heather says she would add two things to this list- one, ask. For anything. Extra time off chemo until after Halloween? Might be impossible, might just be something they are willing to allow. Because after all, going into Halloween already queasy really limits the amount of candy-induced sickness a kid can create for themselves. The doctors aren't monsters, they can occasionally share the privilege of making a kid vomit with things like fun-sized snickers. (She didnt go into a candy tangent while offering this advice, that part was me.) But for real, the worst that can happen when asking for anything and everything hospital-related that might make life easier is they can't accomodate. And two, order food before your little darling gets hungry, it takes awhile to receive it. You can call the kitchen from your cell phone so you don't even have to interrupt hallway funtimes to order the noms. Actually, in CHC, you can call any hospital extension from your cell phone. Just dial 970-77 before the five digit extension number.
And while I'm editing, here's another. Shower as early in the morning as possible. 7 West has a hot water shortage. Also, the white blankets in the blanket warmers are so much softer than the scratchy green ones in the hallway linen closets. But actually, just smuggle your own soft blanket in. Actually, smuggle two. Because yours will probably get barfed on. And then try to remember not to absent mindedly toss it into the hospital laundry bins along with the barfy sheets. That stuff goes to an offsite laundry facility with a several week turnaround and it's practically impossible to get it back. I'm still mourning the loss of the softest, snuggliest baby blanket ever. Curious George accidentally went into a laundry bin once, too. Thankfully, he was missed before the laundry was taken by housekeeping, and retrieved. That was a narrowly averted disaster.
...And now it is several days later. We have had two days of high fevers. Although these necessitated trips to both a local ER and Children's hospital for assessments and cultures, we were able to stay outpatient because of his high counts so far. His platelets and ANC won't hit nadir (lowest low) for another week or two yet. The fever was probably a side effect of chemo, but because nobody can know that for sure, we still have to treat it like a "real" fever, indicating a possible bacterial infection. And it certainly brought Daniel to a halt like a real fever. He is usually somewhat fine, if subdued, until his fever climbs over 103. Above 103, his heart rate goes way up, his breathing gets fast, heavy, and grunty, he shakes uncontrollably and vomits. It was a little scary for us this time, since every other time he's had such high fevers we've had nurses to help us assess him. This time it was just us.
By today, it has dropped steadily down to 99.9. Since he is still getting daily doses of ara-C, the chemo they thought was the culprit, I am thinking maybe it was the Cytoxan, the high-dose chemo he had on Monday. Fever is a less common side effect of that one, but far from unheard of, according to the Internet. Happily, we won't get to test the theory with his next Cytoxan infusion, since this was his last one. Ever. Boom.
I hate the weeks I have to give him his ara-C shots at home so much. They sting him pretty badly, judging by his whimpers. These shots are the only time I have to personally hurt him. The rest of them, the nurses administer while I am the one to help him feel better. We do have the option of an insuflon, a small catheter into his leg to inject into to save the pokes, but that means no baths and the sting of the chemo in his subcutaneous tissue is in the same spot day after day. And as much as he hates his shots, I think he would hate losing his bathtub splash time worse. 
I seriously love that little freaked-out-but-determined face.
It's been a week full of a lot of mixed emotions. So many reminders of why I should never, ever indulge in complaining or wallowing, because it could be so much worse. So many kids have it so much worse. The mom of a teenager with Ewing's Sarcoma (rare bone cancer) laughed ironically with me the other day when she asked what Daniel's diagnosis was and I waved dismissively and said, "Oh, just ALL." And we talked about how much has had to change for us, to use the word "just" before my child's cancer diagnosis in a completely non-sarcastic manner.
Those first few days after Daniel's diagnosis, I referred to Daniel's type of cancer once or twice as "pretend cancer". Our doctor looked at me strangely. That feeling has somewhat stayed with me as I've been rattling around in a world filled with infants facing truly terrible odds, even after years of chemo, brain tumors that very few have even heard of, let alone know how to treat, kids spending months in isolation after transplants, kids who are paraplegics. No, it hasn't really felt like we are pretending anymore when he has been at real risk for life threatening complications, but I still feel like we have "diet cancer". "Cancer (light)". Just one calorie, not quite the real thing. When Daniel's little friend Simone suddenly died not-from-cancer, I suddenly had to face the reality that even diet cancer can have a devastating conclusion, but now that that's been dealt with, or perhaps just neatly compartmentalized, we are back to feeling so grateful that we have dodged so many bullets that so many others were not able to.
Not to mention the non-cancer cruelty we have been witness to this week. It's been a week of yucky reality. Especially with yesterday's heartbreak of Daniel's aunties who were so excited to bring their own baby girl into the world only to receive the news that the baby girl has such a devastating condition the pregnancy has to be terminated now, at twenty weeks, unless she dies naturally very soon. I'm struggling hard with this. I know the feeling of a suddenly, unexpectedly empty womb, but my experiences were after weeks of loving and excitedly planning for those babies-who-weren't, not months. Not after a nursery was created. Not after they had a sex and a name. And they left my body privately and naturally, without cold, harsh medical procedures. I simply cannot even process what this beloved couple is going through. But I'm angry. When did life get so unbelievably cruel? How can so much pain exist in such a beautiful place? Why does choosing to love always mean so much agony?
On a happy note, Bobby's cousin David has nominated Daniel as a guest of honor during his Marine Corp motorcycle club's annual cancer awareness poker run. They let us know the other day that he will be one of two kids with cancer there that day, being shown a spectacular time by the riders. This happens in April, which is exciting because by then his counts should be high enough to attend, and seriously, I can't think of anything he would like more than a day with a whole bunch of guys and their shiny, loud motorcycles. Although he will be allowed to have a motorcycle himself some day over my dead body. Just saying. After I kept him alive through cancer, I'm not about to let him straddle a whole bunch of horsepower with my blessing. Not until he proves to me that his prefrontal cortex is fully functioning and he is capable of a non-reckless decision making process.
And now, bath time is over. Bath time is my time to check out. As long as I am in the bathroom, these two can splash without parental interference, and I am free to write, sitting perched on the toilet lid to referee if needed. Or pull little heads out from under the water should they become too submerged. This is also the time we video chat with grandpa and grandma. They haven't seen their grandsons with clothes on in weeks. But they catch up with each other while grandma and grandpa cook dinner and the littles splash and show off their bath toys.
Bobby is back home now from New Mexico and by some strange blessing, working locally again, we will be able to bring Andy the Dog home soon, and life is feeling pretty darn complete. Here's hoping yours is too.
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