I was unaware of how common leukemia is until we were diagnosed. Now it is everywhere. Or so it seems. You know how sometimes in the days after you learn a new word, you hear it everywhere? So it is with kids with cancer. Once it's on your radar, everyone you know knows someone who's journey parallels your own.
This from the Leukemia Research Foundation:
(Copied and pasted from leukemia-research.org)
Every four minutes, someone is diagnosed with blood cancer – more than 176,000 new cases are expected this year in the United States.
More than 310,000 Americans are living with leukemia
An estimated 55,000 deaths will result from blood cancer this year.
Leukemia causes more deaths than any other cancer among children and young adults under the age of 20; however, leukemia is diagnosed 10 times more often in adults than children.
Every day 143 Americans are diagnosed with leukemia and 66 lose the fight.
Leukemia strikes males and females of all ages and all races. It does not discriminate.
I know I should be looking forward instead of back, but I have been spending time again looking at pictures of Bubba-who-was. I feel like I am grieving a loss. Ever since April, the changes have been coming so fast, and each one signals a new phase of treatment, so they all signify the big suck that is cancer. I might be finally wrapping my mind around the fact that this is not a temporary visit to cancer land. We live here now. So I feel sad looking back at the kid we used to have, back when we were carefree and knew that statistically, we were probably safe. Back when his future was all happy speculation, with the obligatory fine print every parent is aware of but chooses not to dwell on- this child is a gift. Enjoy him. Although he will always be a part of you, he may not always be with you. Bad things happen. Usually to someone else, but not always. 
I feel bad trying to articulate these feelings of loss, because the parents who's child was ripped away from them, either in an instant or over the course of a lost battle with disease, would give anything to have a changed version of their child with them. As would I. But I guess I still get to grieve. I'm not really grieving having lost Bubba-who-was, because Bubba-who-is is busy, entertaining and happy. What I grieve is the loss of who we all were back then. And the symbol of who we were is the pictures of one small, sweet, heartbreakingly normal toddler. One who was so eager to please he had himself mostly potty trained with no effort on my part, who barely cried, who ate what we fed him and who's favorite thing was snuggling with his "person of the hour".
He went away in spirit first, his steroids changing everything about his loyal, sweet personality. He is coming back to us by now. Then he changed drastically in appearance. I know he will look like a normal kid again, but he won't ever look like a normal two year old again. He will be three in January, and will have spent almost his entire second year being defined by a disease, as hard as we try to make everything normal. This disease will be less defining in his third and fourth year, but he will always be the kid who went through more than he should have had to. He doesn't have the luxury ofbeig normal. Instead of begging for kisses and band-aids to cover and fix minor scrapes, he gets them to cover the needle sticks from lumbar punctures and port accesses. Instead of barfing at his friend's house from too much birthday cake, he is barfing from chemo. Instead of fevers from picking up every virus at the playdate, he gets admitted for every fever and playdates are a nervewracking novelty. When I watch him sleep, when all is quiet and my thoughts are loud, these are the things I think about.
I don't really want to have a big pity party, because that seems petty considering I'm not standing helplessly by watching him starve to death, unable to afford treatments. He doesn't have HIV and no meds. We aren't living on rice and very occasional bushmeat. He isn't lying on a dirt floor covered in flies while the cancer wins. But...I kind of do. Consider this my RSVP to the pity party. I want to be able to at least have a place at the table reserved if I decide to show up. That is, if I have nothing better to do.
This week, finally, his personality came back. He sings to himself for the first time in over four months, climbs on my lap (or tries, then holds up his arms for me to lift him), gives me kisses if I am very lucky.
At the moment, he is snuggled on my lap, repeatedly hitting himself in the jaw as he nurses. His vincristine can cause nerve issues, one of which can manifest as jaw pain, and I assume this is why he is doing this.
Godmama/aunt Mary accompanied us home from the hospital. We unloaded the vehicle, then, after a little session of sitting and staring, decompressing, and a load or two of laundry (done by not-me), we took the babies to the park. Daniel insisted on bringing his little ride-on firetruck. He voluntarily (!) went down the small slide a few times, cautiously holding himself back with his feet, giggling with delight over his accomplishment before climbing back up to do it again. Upon discovery of the under-seat cargo space in his firetruck being full of sand toys, he dug in the sand, throwing it up over his head and squealing, "uh-ohhhh!" It was pretty sad to leave the park, but it only took a few minutes to fall asleep once in the car and driving home from the park.
The next morning was clinic day, IT methotrexate and IV vincristine. As we were waiting for Daniel to wake up, I struck up a converstion with the mama next to me, also waiting on her sleeping baby. One thing led to another, and I mentioned we were originally from Marienthal, a little town of about fifty people out on the plains of western Kansas. "You're kidding!" She exclaimed. "You know the pink house on the corner? We lived there before we moved to Colorado."
We had been told about each other by a mutual friend, but did not know each other, even though we worked in the same eight-bed hospital at the same time. I was a night shift CNA while she was materials manager during the days. Their little boy is almost done with their intense first six months of treatment, and almost ready to go into Maintenance. Then we discovered that the third little boy in the room waking up from a lumbar puncture was born on the exact day Daniel was. It was a day for weird coinkidinks like that.
They left his port accessed so we could continue giving his IV Clindamycin at home. Since his timer went off for his noon dose while we were in the recovery room, I had the nurse watch me do it to make sure that I was doing it right. Not that I was worried. It really is quite simple, just scrub the hub for fifteen seconds, then let it dry for fifteen seconds, flush with saline, scrub the hub and let dry, hook up tubing, unclamp and make sure antibiotic is running and the bag is draining, wait 30 minutes while it runs, unhook, scrub the hub and let dry, flush with saline, scrub the hub and let dry, then flush with heparin and lock.
We grabbed a bite in the cafeteria on our way out, then drove to the zoo. Aunt Mary pushed Daniel in the stroller, picking him up and holding him when he didn't quite have the elevation needed to see into the animal enclosures. He started out happy, but then got sad when. I wouldnt allow him to climb all over the bleachers, sticky and polished with many greasy, sweaty hands and behinds. So we loaded up the babies and headed for home, only getting a little turned around and lost on the way.
Then home, where Mary and babies did a whole lot of bonding, playing, and cuddling. I love that my boys have such wonderful mamas in their lives. I feel like one person (moi) just cannot be enough places at once to raise truly wonderful men who have their cuddle accounts full by the time they are thrown into a world of harsh gender expectations. This takes a whole village of women. Like my boy's aunts Mary and Marci, and grandma Sandi, all of whom drop everything and come up here on their own dime, missing work, just to be the arms that hold them and show them what true love feels like while they are tiny. It takes a village of men, as well, and the men in their lives are evolved ones who also fill them with love and reinforcement. What lucky little boys we have. 
Aunt Mary had the airport shuttle come pick her up from our house about 3:45 this afternoon. Daniel tried to follow her down the driveway because he didn't want to see her go, only to realize that the concrete was far too hot to walk on, so he plopped down on his diaper and whimpered. I carried him back to the shade and we sat with quivering lip, but managed not to have actual tears. Then back inside, where we played for about 45 minutes before a little maroon car pulled up to the front of our house and out stepped...dun da-da dunnnn....Daddy!
As it turned out, two weeks and a day into his planned three weeks away, a well in Wyoming called for some loads and all of the northern Colorado drivers were called back to help deliver. He drove like crazy for eleven hours from North Dakota to the well in Cheyenne, Wyoming to get here with a legal logbook, still didnt quite manage it, but slightly illegally slid into the truck yard, parked, and came home to spend a little time with his family before he has to go back to work at 3 am.
I was nervous Daniel would choose the moment he walked in to be contrary and unaffectionate, but he went running (well, staggering) to his daddy for a big hug, then immediately began pulling him around the house, showing him the new toys he had procured since he had seen him last. It was a full hour before I finally got to elbow my own way in for a kiss from Daddy. 
My parents are coming up here tonight yet, showing up late, on their way to Shaw Cancer Center in Edwards for my mom's every-six-month breast cancer checkup Monday morning. They are bringing Andy. The whole family will be together again, including the spastic, shedding, barking head of security. We miss him terribly when he isnt here, but when he is, I don't always have patience for his antics. But without him, we are just not quite complete. This is a problem, since in human years he is over fifty already. He is over the hill, especially in Golden Retriever years.
I am up watching and waiting, keeping a close eye on Daniel. He took a three and a half hour nap today, and was back in bed by eight o'clock. This is slightly abnormal, even for him. We are feeling less confidant about making it to Wednesday to get bloodwork, he does seem to be a little lethargic, but maybe it is just sleep deprivation from our five days in the hospital. However, his hemoglobin was 8.2, they transfuse at 7, and he does seem a little pale. His temp has been in the 99 range, not quite high enough to take him in, but high enough to need to keep taking it and monitoring. And his breath smells faintly like acetone (like nail polish remover), which can be a sign of diabetic ketoacidosis, a side effect of L-aspariginase. So the internet tells me when I google "breath smells acetone leukemia". He also has frequent, extremely runny, gelatinous poop that smells like almost nothing. That aint right. But that I am atributing to the antibiotics he has been on for a week now. I was feeling so smug about his diverse microbiota before this. I had done everything right. Probiotics while pregnant and breastfeeding, vaginal birth, extended breastfeeding, only one dose of antibiotic his entire life, I was giving his microbiome it's very best shot at being well populated and diverse. And now he is drowning in antibiotics, spewing from both ends, beneficial bacteria killed off just like that. But I would rather have him alive than have his tummy bacteria alive and him have a raging infection, so every six hours I dump another dose of antibiotic into his bloodstream and tell myself that he will have a lifetime to deal with any lingering effects. The key word here being life. And then I say things to cancer. Ugly, angry things. Because it took away our best options and left us to choose the lesser of the crappy ones.
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