A light in the darkness, and the new, untouched days ahead

It was a weepy Christmas week for me. Overwhelming to watch Hope so happy - playing with her cousins, tearing into presents, laughing, telling stories, and just enjoying this magical time of year.

We went to clinic on Monday and all is well. She is tolerating her daily chemo well and may need a dose increase next month - which is fine. It was a huge relief and I wish we'd had an appointment before Christmas instead of after so the joy of the holiday hadn't carried an undertone of fear. But all is well. We just need to learn to trust in the moment and enjoy the wonders of now.

White House Christmas Tour, 12/20/14

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Looking back at 2014 is difficult. We are so ready to close the door on it. (So ready, in fact, that we'll be moving into a new house in January! With a giant backyard and more elbow room! More on that soon...) But there's a contradiction at work when we do force ourselves to reflect on the year.

In a light-filled room, even the most beautiful lamp is just a room accessory, likely to be overlooked. But in an otherwise deep and complete blackness, that same lamp inspires hushed voices and awe. 

We are acutely aware of life and love and family this year. Moments of joy and health and the wonder of everyday things are burning more brightly than ever before. Blinding, brilliant light braving the darkness because that's what it is meant to do.

"And now let us believe in a long year that is given to us, new, untouched, full of things that have never been." - Rainer Maria Rilke

Welcome, 2015. We look forward with H/hope to the new, untouched days ahead.

Giving thanks...

... for the incredible Hope who brings more light and beauty into the world than seems possible for one small human. ... for the ways she has bounced back over and over from pain, discomfort, sadness, and frustration. ... for the great strides she has made in speech and strength and agility. ... for the example she provides to me and to everyone she meets of how to live for the present moment, to be open to the world and its people and experiences, great and small, to leave behind the problems of yesterday and focus on the blessings of today.

... for Celia and Quinn, who have grown so much both because and in spite of the impossible challenges they have been forced to confront this year. ... for their relentless pursuit of becoming more fully who they are. ... for their laughter, insane brainpower, and companionship.

... for Greg, whose steady presence makes so much possible. ... for his hand to hold and shoulder to cry on. ... for his love when it's the only thing to hang on to.

... for our families - parents and siblings and in-laws and the cousins - whose Facetime calls and hospital visits and frequent check-ins remind us of our most important connections in this world, the ones that will always be there to pick us up. ... and especially for my parents who dropped everything and practically moved into a hotel in downtown Baltimore to be here - to sit in clinic or our hospital room, to spend time throwing a football with Quinn or chatting with Celia about her day, and just to bear witness to all that has happened.

... for our neighbors and friends who fed us for months (too many to name, but must mention Kate and Dom!), drove our kids to and from school, call and text to let us know you are thinking of us (esp. Lisa!), listen to all the gory details with interest and compassion (esp. Dorothy!). ... for Jennifer and her family whose friendship and support for Celia and our family continues to buoy us. ... for old and dear friends who are far away but whose love still holds us up (and esp. Heather and Alyssa).

... for Pia, Rachel, Stacy, Linda, Erin, and all the therapists who have kept Hope moving forward, who always see her potential and believe in her, and who have given us company and normalcy in our months of solitude.

... for the nurses - the brilliant, kind, amazing nurses - who do their jobs with professionalism, accuracy, and skill, truly care for Hope and for our family, teach us how to manage the nuts and bolts of this ordeal, give us lessons in advocacy, and have become part of our lives in countless ways.

... for the doctors, who always give us their full attention, make their concern and care for Hope a priority, and answer our countless questions with respect and kindness.

... for the families who have walked this walk before us, who put their faith in the research protocols for the best interests not only of their child but of all the children who will face leukemia in the future. ... for the parents who have shown us by their example how to keep putting one foot in front of the other, even when it seems impossible, who face far steeper climbs than we do and still manage to say hello at the coffee machine or smile at Hope in the hallway.

... for the strangers who reach out with kind words and loving gifts, especially the Erwins whom we have never met but who have sent Hope many thoughtful care packages just because. (May we return that generosity of spirit into the world some day!)

Adventures in Hope-Land: A Birthday, Halloween, the Buddy Walk and Maintenance

We can't yet see the light at the end of the tunnel, but the tunnel seems to be a bit wider and higher, so we don't have to crouch as much. And occasionally we can stand fully erect and feel part of the world again.

Hope turned 4 a few weeks ago. It was a perfect warm fall day - with a trip to the zoo with cousins, a visit with Aunt Mare and Cait in from Chicago, lots of presents, a Barney cake made by her amazing big sister, spaghetti and meatballs, and s'mores! She likes the ritual of singing Happy Birthday and blowing out the candles, so we did cupcakes in the afternoon and a cake after dinner. (Hope didn't take a bite of either treat - still not into sweets - but Celia and Quinn appreciated it!)

It's hard to believe all that has happened since she turned 3.

Here's to a smoother ride this year...

****

We had to try three times to make counts to start maintenance, but she finally had a high enough ANC last Monday, Nov. 3. Unlike the other phases, where each dose of chemo and day of treatment are required by the protocol, and delays stretch out the timeline, long-term maintenance (LTM) is different. LTM has an end date - for Hope it's June 4, 2016 - and she'll go through a series of 85-day cycles until that date. Once you begin LTM, you are in it for the long haul - with no delays. Occasionally chemo might get held (for illness or low counts), but you don't "make it up." So the two weeks it took to get started were easier to take than the delays in earlier phases.

The objective of LTM is to keep Hope's immune system suppressed to a level that will prevent any lingering cancer cells from multiplying but will allow her to fight off routine viruses and bacteria. (The goal is an ANC that stays between 750 and 1500.) Lots of kids go back to school during maintenance, and live relatively normal lives, at least in comparison to the first 8 months of treatment. Once or twice in every cycle she'll have lumbar punctures with chemo (days 1 and 29 in the first 4 cycles, day 1 in the rest of the cycles), and day 1 of each cycle she'll get vincristine. We'll go to clinic about once a month. But most of the protocol is oral meds at home. Each cycle begins with a 5-day pulse of prednisone, and then there's a nightly oral chemo (mercaptopurine or 6mp), and a weekly oral chemo (methotrexate). The chemo dosages will get adjusted to keep her ANC in the sweet spot they are looking for. So that's the drill and we'll just see how it goes.

This week she's doing her first prednisone pulse - and it's intense. Lots of tears and tantrums - and near constant intake of Chex Mix. She feels pretty rotten - her belly hurts and her legs ache. But she is enjoying the tiny bit of additional freedom. After school yesterday, she and Quinn and I went *into* Frank's Pizza to eat. She was thrilled to be inside where she could say hello to everyone and people watch.

*****

I realize now that I've reached the end of this post that I missed some major events during my blog hiatus: Halloween (when a fortune teller, Percy Jackson, and a princess had a great time in the neighborhood) and the Baltimore Buddy Walk (when Team "Hope for the Future" raised $3530 for the Chesapeake Down Syndrome Parent Group, Celia and Quinn ran the 5K, Hope walked the entire mile, and 32 of Hope's friends and family joined the 1000 participants on a cold, windy morning to celebrate our loved ones with Down syndrome).

Here's a few shots from both:

Team Hope for the Future

The DJ played Call Me Maybe and Hope came running over to dance.

Nearing the finish line of his first 5K

Celia at the finish line: 2nd in her age group!

This girl

I feel like I started this blog to tell everyone about Hope and her journey, and somehow along the way it's turned into a tale of my journey. I'm sorry about that; I'm not a big fan of memoir. Maybe Hope and I have both regressed back to that infancy stage where we have a hard time remembering where one of us ends and the other begins... 

But today I want to tell you about Hope. How she changes people wherever she goes. How the life she brings into elevators and waiting rooms startles unsuspecting strangers. How today she charmed a therapy dog named Lewis. 

The Child Life Specialists at Hopkins periodically have therapy dogs visit the kids in the "Great Room" that's right next to clinic. Hope and I stopped in while we were waiting for her lab work to come back on Friday and met Lewis, a beautiful Chesapeake Bay retriever. They played ball and posed for photos. She refused to leave until he was on his way out too.

I'm kicking myself for not having the presence of mind to record an amazing dance party Hope initiated in her favorite pizza place a couple weeks ago. She was on her way out carrying a teetering pizza box in front of her, when Pharrell's Happy started playing over the restaurant's speakers. She immediately starts bouncing and then turns on her heel back to a more open spot for her full-on boogie. Two women who were ordering while this was happening, spin around and start dancing with her. Hope points at me, Nanna, and Quinn, and issues the command, "Dance!" Little bald cutie with a face mask and a pizza box, grooving to "Happy." It was like the feel-good movie of the week. As the song neared its end, we conga-lined it out of the restaurant, with one of these strangers leading the way. How was that not a viral video that landed us on a network morning show?

That's what she does. She lives this life fully present in every moment and invites us all to join her. (OK, sometimes the "invitation" is a a tad dictatorial.)

In my darkest moments I think that at the end of all this she has to be OK, because the world could not keep spinning without her, the pain of losing her would crush more people than could be counted. It's impossible.

But most of the time I just revel in her and the joy of being with her. And wonder at how she has taken all of this in stride and continues to do great.

She got her last dose of Peg-asparagase Friday. Her chemo next Friday is the last of  this phase. Maintenance is real, and it's coming soon.

Vigilance

Hope is almost three-quarters of the way through Delayed Intensification. Today she got the last of eight doses of cytarabine (or ARA-C). She got six of the eight infusions at home, with visits from a home health nurse (which saves us from hours in clinic!). Except for a lousy appetite, she's handling it all well and has loads of energy (especially after getting tanked up on red blood today), but it's a stressful time: her port had to remain accessed for two 4-day stretches and her counts are in free fall.

The bandage over her port site kept peeling up, which is a potential infection risk. Her IV anti-nausea meds and chemo are stored in the refrigerator and need to be removed at specific times. She is barely eating, and dehydration is a major concern. Oh, and last week, I turned the ringer on my phone off one night and missed the alarm to give her the "rescue drug" she gets for the intrathecal methotrexate; I remembered the moment I woke up at 6 am in a panic.

And now she is neutropenic; she will probably continue to have virtually no operational white cells for the next 3-4 weeks. So I feel her forehead all day long, hoping for no fever that would send us to the hospital until her ANC rises. Celia was home sick from school for 3 days a couple of weeks ago, but her ANC was higher then. Yesterday, however, Quinn came down with a temperature. (Sigh.)

The constant vigilance is exhausting.

As the parent of a child with leukemia, you make virtually no decisions. You don't pick a doctor, or weigh your treatment options. When you picked an ER, you picked your treatment team and location whether you realized it or not. Acute leukemia is an emergency situation, so your child is admitted and there you stay. (Lucky for us, we went to Hopkins!) Most kids, including Hope, are put on a research protocol for their specific type of leukemia and risk stratum; you can refuse the study and go with a standard course of treatment, but that's a tough call in the midst of the emergency you are dealing with.

Once in treatment, there are few parental judgment calls: You must call the docs if her fever is over 100.4. You must follow the intricate drug regimen and enforce a series of food, activity, and situation prohibitions (deli meat, construction sites, anywhere crowded). But within this prescribed parental role, there is one main duty expected of you: vigilance.

Keep her away from sick people. Monitor her fluid intake - and output. Watch for signs of infection, and petechiae (little bruises from low platelet count) and anemia. Pay attention to her energy level, her gait, her appetite, her sleep patterns. Be on constant alert for rashes, bruises, bleeding, mouth sores, cold symptoms, signs of pain, etc.

It's reassuring to go to clinic (or have a nurse come to the house) so someone else can assess her, listen to our report, and determine that all is well. I am suspicious that this vigilance will never go away -- it's a familiar feeling from the earliest newborn days when you feel compelled to make sure your hours or days old infant is still breathing -- but eventually you chase that fear away because no one can live like that.

There has to be some trust, some throwing up of hands in surrender. I'm hopeful that we can learn to be vigilant without being obsessive.

Hope has had 14 lumbar punctures so far. I hate waiting for her to wake up from the anesthesia, although she usually pops up groggily and immediately asks for "chips" or "bread" or "bagel" or "bacon" -- depending upon her favorite food du jour. But I can't stand the beeping monitors in the PACU: heart monitors, pulse rate, respiratory rate, blood pressure. And the alarms when anything falls out of "normal range." Kids with Down syndrome tend to be bradycardic (slow heart rate) when they are sleeping, so there are often flashing numbers and blaring alarms going off while the nurses seem wholly unconcerned. It's unnerving. Last Friday, with no fanfare, our PACU nurse got up and changed all the parameters of the monitor so it wouldn't beep. It was such a relief. Hope was breathing, her heart was beating, she was doing fine. There was no need for extra vigilance. She woke up asking for pretzels.

The bone marrow mysteries

September 5 was day 29 of Delayed Intensification, but as I noted in my last post, Hope didn't make counts; her ANC was 240 and needed to be 750 to begin the second month of this phase. We returned Wednesday, September 10th,  for a second try - still no go. 640. And again, Friday the 12th -- third time's a charm, right? -- certain that she would make it and we'd be off to the races. But... it was 730. Certain we'd make it this morning, the 15th, we found it stalled out at 730. Her clinic nurse Lisa said, "Bone marrow isn't an exact science."

It's a confounding idea. On the one hand, we get copies of her labs every visit with long lists of numbers - and it sure looks like an exact science. The percentage of neutrophils, eosinophils and basophils, grams of hemoglobin per deciliter, and counts of platelets and white blood cells per cubic millimeter, creatinine and bilirubin, glucose and aspartate aminotransferase. It's a flurry of numbers and we have gradually learned which ones are most meaningful, which drugs can elevate which levels, and when the highlighting of a number as "abnormal" (light gray) or "panic" (dark gray) is something to be concerned about -- and when it isn't.

But the numbers don't always behave as you might expect them to. They trend correctly, but day to day something that should be going down because of chemo might suddenly blip up, or vice versa. We are told to expect it to take 7-10 days for her counts to hit bottom after chemo, but on day 14 she's still heading down. Or, with another drug, her counts bottom out in 2 days and then start to rebound. And it all seems fine - no one seems concerned. We ask again and again, "But is it OK that...?" Yes, it's fine.

We've learned so much about this world of leukemia, but there's so much that is still a mystery.

School begins, and the guy at the pizza place

It’s been a busy couple of weeks, getting back into the school routine: earlier bedtimes, packing lunches, scrambling to get out the door, dabbling in some homework.

Hope is slowly recovering from the steroids. I’m making the transition from happily supplying whatever food she agrees to eat (from $6/bag pretzel chips – I can’t imagine our pretzel spending in the last month – to a daily McDonald’s run for “chicken and fries”) to insisting upon some healthier options interspersed between the salty snack food that has become the backbone of her diet. And I’ve put my foot down about the McDonald’s. Celia’s observation from earlier in the summer is haunting me: “Isn’t it weird that we never used to eat McDonald’s food because it isn’t healthy, and then one of us got cancer and we go here all the time?” Uh, yes, it’s weird.

It’s also weird that I’ve gone from being a person who refused to buy paper towels, opting for piles of kitchen rags and washcloths, and who insisted upon hand-washing plastic containers rather than putting plastics in the hot dishwasher, to being a person who is all about disposable everything and sanitizing everything in the dishwasher. The landfill and unseen carcinogens be damned. Yes, weird.

All that aside, despite an apparently insignificant rash, Hope is shedding the steroid side effects – though she is trying hard to cling to the snack food and challenging mood. (We are getting a lot of “NO, RIGHT NOW!”) But her counts are still too low to move on to the next round of chemo. We tried on Friday and will return on Wednesday for another go at it.

****************************

Taking Hope out in public is strange. In some ways, we are used to being noticed. She is crazy cute, of course ; ) Additionally, children with Down syndrome seem to elicit double-takes with some regularity. It’s fine. It doesn’t bother me anymore. In fact, I have developed the probably annoying tendency to take any brave sustained second look as an invitation to introduce Hope and engage the innocent bystander as long as they are willing.

But since she’s lost her hair, it’s different. You don’t see many kids with cancer out and about. There’s a sadness that goes along with the second look; and eyes are generally diverted as quickly as possible. It’s understandable. No one wants to pry. No one wants to ask a question that has an answer they don’t want to hear; it just might make a casual encounter monumentally uncomfortable. What if the news isn’t good? What if she’s terminal? What if it’s inoperable? What if… I sympathize because I have felt the same barrier in clinic and on the inpatient side. But the consequence of this completely reasonable situation is the feeling that you suck the air out of every room you enter. Maybe it’s another reason that being in the hospital starts to feel so comforting.

Today, however, we had a different experience. A stranger came up to us in a pizza place. We were picking up Hope’s craving of the week, her fourth cheese pizza in as many days. (She pretty much only eats the crust.) As the man ahead of us in line paid and turned to leave with his stack of pizzas, he did the requisite double-take, then turned to me and asked, “How is she doing?” I looked at him closely, assuming at first that he must be someone I knew. I guess I looked flustered because he then explained that his son had gone through chemo treatments for retinoblastoma when he was 7 months old – he is five now and doing great. The air rushed into the room and I gave him a few brief bullet points – diagnosis, one month left of intense chemo, doing pretty well – and he left.

I instantly thought of an interaction on another recent pizza run. Hope and I had run into an acquaintance. It was probably the first time he had seen Hope since her diagnosis, and when he approached us, his face took on a strange contorted look of concern. He said he was “so sorry to hear about what you're dealing with.” And then without missing a beat: “But besides that, how’s everything going?”

“Besides that”? So, maybe I was having a bad day, a little raw or hyper-sensitive, but “besides that”?!?

There is no “besides that” – there is just “that.” How we are managing work around cancer, how the kids are trying to have their childhoods around cancer, how we are desperately hunting for small windows of family fun and connection around cancer.

My mom often quotes her Nanna as saying, “Every baby brings their own love.” There isn’t a finite amount of love to be distributed amongst people; love is born in relationship. I would add that each human also brings joy and wonder and pain and loss in somewhat equal measure into the world. You don’t get to share in the joy without taking on some of the pain, that’s what it means to be in relationship.

The stranger in the pizza place took a tremendous risk – and because he has been where we are, he did so knowingly. He invited both the joy and the pain – hoping I would say she was doing great, but knowing I might say it was relapse, that I might share that her prognosis was poor, that I might dissolve into a puddle while he stood there holding his pizza. He knew it, and he did it anyway. And with that simple question, he took on a piece of our burden. Hope’s cancer was, for that moment, not the bald elephant in the room – the thing that cannot be overlooked, but is so frightening that it cannot be acknowledged – it was instead the pain and sorrow inextricably intertwined with the joy and wonder.

Spending warm summer days indoors

The big kids had to tag along to clinic last week. They brought books and electronics to keep them occupied for the expected two hour appointment which entailed vitals, labs, an exam and two quick chemo infusions. As quick as these appointments get. Unfortunately, the best laid plans infrequently work out. Hope’s port was a little slow – maybe some clotting somewhere on the line – so they had to put in the Drano (of sorts) and wait an extra hour, then we ran into lunchtime, and… somehow two hours turned into five.

But Quinn and Celia were champs. No whining, no complaining, no fighting. They don’t like coming to clinic, not only because it’s boring (someday I’ll write a whole post entitled: Cancer Is Boring), but also because even if you are used to having a bald sister who takes lots of meds and worried parents, you see and hear a lot in the clinic that is scary. Celia noted later in the day that the worst thing for her is overhearing docs and nurses talking to families who are just beginning treatment. These days we can look in the rearview mirror in wonder at all we have come through already, but it’s easier to put your head down and plow ahead. Newcomers are a reminder of the totality of the journey – and how many unanticipated bumps and turns there are.

Hope is back on steroids again. And this week is shaping up to be more intense than the first week of this phase. Greg noted the week off in between the two pulses felt impossibly short – she never went back to her normal appetite or an even temperament. I’ve heard some kids need Ativan to deal with the side effects of high dose steroids and I can see why. She clearly feels horrible and can’t figure out why or what might make it better. It’s devastating to watch. As of this moment, we are 7 doses in, with 7 doses remaining…

The good news is that we don’t have a scheduled clinic appointment until September 5 – when she starts the second month of Delayed Intensification (if she makes counts). 

Reality bites

Friday morning we headed back to clinic after our 11-day break. Yup, it was hard. According to her nurse, her counts were "beautiful," and so on to Delayed Intensification...

After a lumbar puncture with chemo, she got vincristine and a new chemo for her, doxorubicin. By the time we headed down to the pharmacy to wait for her dexamethasone prescription, she was done. 

Her dex dosage is about 60% higher in this phase than it was in induction, but it's one week on, one week off, one week on - so we'll see how it goes. She's up and down - dancing and singing one minute, whining and clingy the next. These video clips tell the story well:

  

Today's chemo seemed to go fine (peg-asparaginase), but the end of the day was rough. Lots of crying and complaints of belly pain. Anti-nausea meds didn't do the trick and she couldn't keep her nighttime meds down. Hopefully she'll get a good night's sleep and feel a little better in the morning. Day 4 of this 56 day phase...

Down by the bay

Last week in clinic we learned that Hope's next appointment was 11 days away. "What are you going to do?" we were asked repeatedly. With a solid ANC, growing appetite and energy to spare, Hope was raring to go, so we decided to - gulp - go on vacation! Like normal people. Not too far away, and for just three nights, but still. Best decision we've made in a long time.

Pool with water slide, mini golf, s'mores (Hope's new obsession), restaurants, frisbee, and loads of long hallways. It was amazing.

When I was a kid, it used to drive me crazy that on the last day of our vacation my parents would always try to cram in one more activity. "Let's just stop at the beach on the way to the ferry." "We'll get a late checkout so we can take one more dip in the pool." We'd all groan and complain. But this morning I tried every trick in the book to extend our normal family vacation just a bit longer. 

Mtx: 4, Hope: 0

Skunked, 4-0. Even her amazing super girl ballerina outfit didn't protect her.

It was just too toxic for her, even at the 50% dosage she got a mouthful of nasty sores. We came home after 5 days, but ended up back in the hospital for 2 more nights because of pain and low blood sugar from no eating. Home for good on Wednesday, with a few nights of IV fluids here to see her through the rest of the mucositis. 

But the good news is that, after 41 nights in the hospital since Memorial Day, she's finally done with methotrexate in that form. (There will be weekly oral doses of mtx during maintenance, and many more lumbar punctures with mtx...)

Now she has two weeks to recover before the last intense phase of treatment, Delayed Intensification (aka Everything But the Kitchen Sink).

Toes

H: I paint

M: OK, do you want to paint with your fingers or a brush?

H: Feet!

So this happened...

The big thaw

We left the hospital Friday afternoon. Coming home is always a bit of a challenge. Hope is excited on arrival but then clingy and tentative for a few days. We've spent so much of the last two months in the hospital that I think she misses its routines, rhythms and personalities.

I find the transition a challenge too. The first 24 hours feel like a great thaw. It's always jeans-and-sweatshirt weather at Hopkins. We've watched winter turn into spring and spring to summer through the giant windows - but we haven't felt it much. I like to come home and sit on the stoop in the blistering sun.

But there's another numbness that I need to melt away - and it makes the quick transitions more difficult. The beautiful toddlers and preschoolers with wispy bald heads don't seem out of the ordinary to me anymore. With other parents and hospital staff, we trade stories about the cute things they say, weird foods they eat, their little kid "crushes" on a favorite nurse or doc. Their diseases, the scheduled poisons or complications that led to their admissions, are forgotten to make the days and weeks in the hospital bearable. The teens whose diagnoses I can only guess at stay behind closed doors, while their tight-lipped parents smile at the little ones doing laps around the unit. 

These few days at home allow for a thaw of this protective shell - to feel the sadness and fear of these realities before we jump back in. 

Wednesday. It's her last scheduled admission, for a 50% reduced dose of methotrexate. 

It's like déjà vu all over again

Yesterday was not a good day. We had a hard time getting on top of the pain. She had some nice distractions though - and that helped. The Child Life Specialist brought in shaving cream and finger paints for some messy fun.

And a music education student from Peabody brought some instruments and musical games.

But really it was this kind of overwhelming today:

Looks like maybe her counts are starting to creep back up, so healing may follow...

Mtx, Round 3

Hope had a good week at home with lots of World Cup (and Barney), Lunchables, fun with Celia and Quinn, and some cooking with me...

We returned Wednesday morning for round 3 of the epic battle: Hope vs. Methotrexate. When we left last week, the general consensus seemed to be that her mucositis earned her another dose reduction of 25%. But in the team's rehashing of events (particularly the continuous intake of Lunchables) they decided to stick with the same dosage as round 2. It's good and bad news. 

On the one hand, we want her to get enough  to do the job. One doc told us yesterday that when they added this phase of high-dose mtx to the protocol a few years ago they saw EFS (event free survival) rates rise 10% - an amazing increase for childhood leukemia given how high these rates already were by that time. (Hope's dose is intermediate dose because of her Ds.) We want that payoff.

But, on the flip side, she will almost certainly get mucositis again. Hopefully its severity and the placement of the sores won't prevent her from eating and drinking. And, of course, our stay is likely to be extended by a few days. Last time it took a week, so that's a reasonable estimate.

This round started with another trip to the 4th floor OR for a lumbar puncture with chemo. Needless to say, Hope has many friends in pre-op, so she spent part of the wait doing some "work" at the nurses' station with her friend Serenti.

The 24-hour methotrexate infusion started at 10 pm. After a middle-of-the-night port fiasco (that required re-accessing her port because she pulled the needle out and dressing off while sleeping), it has been uneventful so far. Many laps around the unit, painting in the playroom, a lovely visit from Dorothy and Mags, and dinner with everybody. 

Clearance and the waiting start tomorrow.

Mtx Round 2

Well, the winner is still undecided. Hope seemed in control early in this bout. She came in Thursday in good spirits and promptly determined that Wavy Ranch potato chips would be her food of choice.

She kept it up to the tune of 3 bags a day - Thursday to Saturday - with an occasional chicken tender on the side. It was the most enthusiastic eating we had seen in weeks and we were delighted with each fat-laden bite! She insisted on frequent field trips "downstairs" and laps around the unit to visit the laundry room, the kitchen, and the nurses' station. Each day she seemed stronger.

But Sunday, right after the docs' rounds with a promise of an early evening discharge, she winced and cried out while trying to enjoy her second bag of chips. By bedtime she was back on morphine with a bunch of visible mouth and throat sores. 

But today it feels like neither side is willing to back down. Hope has insisted on eating all day long - ham, turkey, and cheese and crackers. (She has met the Lunchable and is delighted by it. Ugh.) But her energy has been low, spending most of the day in bed. It felt like something was brewing... or that damn mtx was winding up for a sucker punch. 

Fever of 102.5. So antibiotics, blood cultures, urine sample. And we wait to see what's next...