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.
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