366 Days with Leukemia

Shuffling along towards the finish line

Tag: toddler with cancer

April 13, 2013: Maintenance Cycle V

Oh how I have fallen! From a picture every day, to barely one/month, to losing the whole month of March! I started this post back in March, but we’re halfway through April now and it’s just languished here, unfinished. Mostly, we are just busy with life. Cancer takes a backseat now in a way I could have never imagined. Honestly, there are days that I almost forget we are doing this up until 11PM when J drags himself from the couch to mix nightly chemo. I sometimes even forget to carry Purell now. GASP. I know. We’ve grown a bit lax with our sanitizing efforts as E’s counts have continued to remain stable and as her oncologist assures us that we’re doing just fine. A little bit of exposure to the various coughs, sneezes, and runny noses of childhood isn’t a potential death sentence now – though it takes a lot of blind faith to just trust that she’ll be OK.

For awhile, I was planning on taking the blog down. It’s just too much of our life out there and the internet is too sinister a place for us (mostly, for E). However, lately, I’ve been getting quite a few emails from families saying, “Thank you for writing all this!” So I continue onward, cautiously. It would be a shame not to have this place to document this upcoming October (!!!) when this part of our life becomes just another part of family lore. “Hey, remember that time our kid had cancer?”

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IV vincristine, spinal Methotrexate, a 4 hour IVIG infusion, and 5 days of steroids are always a reminder that we are still doing this, though. Maintenance Cycle 5 got off without a hitch. Good counts, an easy port access, a complication-free spinal tap followed by a well-deserved breakfast, and approximately 500 episodes of Curious George. Elsa was Brave with a capital B at clinic, which she now proudly announces. Treatment is very different now than it was two years ago. She’s a kid getting chemo instead of a baby and the whole transition has been pretty wild. It wasn’t easy managing a baby with cancer, but I have to say that  I’m glad the majority of the experience is behind her and happened before she could talk. As she gets older and as our conversations grow more complex, it’s pretty  draining to hear her fret over how tubey is going to hurt or how she’s sick and needs to go to the HOPsital. She worries now.

If there were one picture that could sum up steroid week, it would be this:

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Despondent to the max. And if I couldn’t use that picture, it would be this:

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A constant buffet of choice snacks and the glazed-over look of a kid who has been watching TV for HOURS.

Thankfully, it’s only a week. One week of TV, sleeplessness, and 24 hour grumps really isn’t so bad compared to the 10 straight months of it that we lived once upon a time. The week passed and, when it was over and behind us, we tried to drink up the idea that we only have two more big chemo days. Maintenance Cycles 6 and 7 and then leukemia is history. Woah.

April 11, 2012: Begin Maintenance Sequence

(In my mind, the title of this post is to be said in a robot voice)

I suppose that this is a feature of regular, non-cancer-life parenthood that is only magnified by our situation: Elsa was diagnosed with leukemia yesterday. Yesterday morning, I collapsed on the floor outside of the Operating Room and had to be scraped up and forced to walk slowly down the hallway as they cut her open. Then again, we have been doing this for years. Decades, even. My whole life, I have been a mom to a kid with cancer, even though she was diagnosed yesterday. Is someone studying this phenomenon?

Monday, we had our first clinic visit of Long-Term Maintenance. For leukemia parents, that is a pretty big deal. A sign that your kid has survived the initial half-year onslaught (for us, it was 8.5 months because of routine delays) and gets to pass “Go,” for another trip around the board. This new phase will last for the next 546 days (Thank you Countdown Clock for helping me to ever quantify the passage of time in my life). Her ANC was 1500ish, so she was cleared for her IV vincristine and spinal methotrexate. She also started a five-day course of steroids and a daily, oral chemotherapy called 6-MP. Only 546 more doses! Next week, we will start giving her weekly doses of oral methotrexate as well. Phew. The daily medication routine has gotten pretty epic.

Of all the things they do to her at clinic, including putting needles in her spine and chest wall, the only thing that she complains about is the numbing cream they put on her back, prior to the spinal tap. It’s the same cream she happily accepts on her port in the morning to prepare her for being accessed, but, for whatever reason, the cold cream on her back is an insult. I’m always amused that THAT is the worst part of the day:

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Her spinal was scheduled for 2PM because of the slow-as-molasses (gosh, I love that phrase!) pace of the lab/pharmacy. By the time we get her counts back and her chemo prepared, the day has passed us by. Of course, we had our requisite hour spent sitting on the edge of the sink, playing in our “pool.” Long about 1PM, after 5 hours without any food/drink/nap, this is the only activity that keeps her (and subsequently, me) from totally losing her mind.

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I’m obsessed with taking pictures of her with the reflection in the towel dispenser. Never gets old to me.

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I also can’t get enough of the silly drunk faces she makes as she wakes up from her versed/ketamine dreams.

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We also got some really excellent news about our randomization in the COG-AALL 0932 clinical trial. I’ll try to make this brief (I will probably fail) because it is wildly boring to anyone not actually going through this. Also, whatever I am spewing here is just my interpretation of what I have read. I’m far from an expert on this stuff, so if you are reading this because you are the parent of a kid with ALL, please check out some of the links I have posted (up there at the top) for any expert info.

The standard of care for pediatric ALL treatment varies somewhat depending on where you are treated. Some hospitals, like St. Judes and Boston Children’s (I think) and Children’s Hospital of Pennsylvania, have their own treatment protocols. For the most part, though, kids with ALL are treated with the standard COG (Children’s Oncology Group) protocol. For long-term maintenance, that standard of care includes once monthly steroid/vincristine pulses, once every three months spinal methotrexate, daily oral 6-MP and weekly oral methotrexate. The prognosis for these average-risk kids is somewhere over 85%. The treatment, though, is pretty toxic and a lot of kids end up with long-term neuropathy or other complications from the steroids/vincristine. So, we are enrolled in a huge clinical trial sponsored by the COG that is looking at trying to decrease the toxicity of treatment while still maintaining such high cure rates. From what I understand, a lot of European countries (Germany, especially) have found that children can get WAY less vincristine/steroids or NONE at all and still have equal EFS (event-free survival) rates. We have certainly seen short-term toxicity with Elsa, including neuropathy from the vincristine (for which she requires Neurontin daily) and a lot of pain/limping/awfullness from the steroids. Deep in my heart of hearts, I believe that this treatment is more toxic than necessary for these average-risk kids, so I am happy to have Elsa enrolled in this trial.

So what is our good news!? We were randomized to the arm of the clinical trial that administers the LEAST amount of chemotherapy: Arm C! She will still get the standard doses of all oral chemo and spinal chemo, but she will only be subjected to vincristine/steroids every THREE months. There is definitely room for some worry – I know that, perhaps you are thinking, “Is it OK to get LESS chemo?” Though we don’t know the answer for sure, there is definitely research saying, “Yes.” This clinical trial is based on quite a lot of research that says that, in Elsa’s particular risk category, it is safe to administer less vincristine/steroids. I think that I will always have twinges of doubt, wondering if, perhaps we should have dropped off study and gone with the standard of care. I wouldn’t be me if I didn’t have some twinges of doubt about something. Like I said though, I believe in this Arm of the protocol and, though the stakes are big (huge, in fact. MONUMENTAL, really), John and I agree that we are happy with our placement.

THREEEEEE MOOOOOONNNNNTTTTHHHS! Considering we have been on basically weekly IV chemo for the past 8.5 months, this is a huge, huge, huge change of pace for us. When they told us we didn’t have to come back for another two weeks (just to have her blood counts checked), I actually felt a little terrified. Two weeks without knowing her blood counts?! How will I know if it is safe to take her to the library!? To the grocery store? Once her counts stabilize, we will go down to monthly blood count checks: again, terrifying. All terror aside (because I wouldn’t be me if there wasn’t a little terror sprinkled on top), this is wonderful news and exactly what we had hoped for.

Now we just need to put our heads down and endure this steroid week – it’s shaping up to be unpleasant but a mere fraction of the steroid hell we’ve lived in the past. Our supplies of guacamole and goldfish are reinforced and I’m ready to run on just a couple of hours of sleep come Thursday-Saturday.

Maintenance Sequence Initiated!

March 23, 2012: less charming this time around

The first time I wrote about getting a pedicure while my cancer kid was in the hospital, everyone celebrated. You go cancer mom! Take care of yourself! Don’t feel guilty, just enjoy! Now? The second time around, I’m pretty sure it’s stopped being cute. I mean, who does this?! After a long two nights in the hospital, I just couldn’t think of a better way to spend my break time while J covers a shift at the hospital.

We are still inpatient. The big let down of the day was that we were sure we would be leaving today. Yesterday, her ANC struggled it’s way over 200 so we were just waiting for her to go 24 hours without a fever. This morning, she was happily still feverless when thy came to tell us that her ANC gave up its valiant effort and dropped back down to 106. Ugh. At this point in the cancer parenting game, I should know better than to get my hopes up over something as fickle as an ANC – but I did. So now we are stuck in our 8th floor sanctuary and she is scarily immunocompromised, but at least we’ve done this before. Goal of the rest of the admission: not to acquire any of the scary hospital bugs that are my invisible, constant tormentors.Stay away Staph. F-you Pseudomonas. Don’t even think of it C-diff!

This is what our room looks like to normal people:

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This is what our room, horrifyingly, looks like to me. Each yellow tag is a killer infection just waiting to jump from someone’s hands to Elsa’s port.

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Needless to say, it will be such a relief to get back into our own space with our own safe, benign germies.

J and I don’t even have to discuss it anymore- its just a given that we will handle her care in shifts. I do overnights and mornings (and sometimes afternoons since its a weekday and he has to work). J does afternoons and evenings while I go and do absurd things like have my feet fondled.

*Pedicure interlude: my Korean friend just happily informed me that my feet are too rough and he did “the best he could.” I told him that I don’t need to look fancy and his best is good enough.

Thank you to everyone who has checked in with us recently. I usually try to keep up with comments on the blog and reply to them but the wireless at the hospital is unreliable and makes WordPress impossible to use. Please know that we read them all and they are all little moments of joy in our otherwise somewhat tedious hospital life.

One fun tidbit of Elsa news: her speech has taken some sort of radical turn and she is chatting with us up a storm! I don’t think I’ve mentioned it often here but Elsa’s speech has been delayed- probably a combo of the whole cancer thing and two parents who always just gave her everything she wanted without making her actually ask. She has had early childhood intervention through our state with a therapist who comes and works with us every week on getting her talking. Just this hospital admission, she has started to string words together! Her first sentence? As screamed in my face during one of her many arduous, clumsy trips to the bathroom with me since I can’t leave her alone when she is attached to her IV pole:

“Mama! Pee pee lellow! Lellow pee pee mama! LELLO!”

Yes sweet pea. Yes, the pee pee is yellow. Very accurate. Thank you.

March 11, 2012: Relatively smooth sailing

Our clinic visit on Thursday went well. I hesitate to say it, but I think Elsa has turned some sort of developmental corner where she actually understands now that she can’t eat or drink and this understanding has brought us both peace. When we started this whole crazy ride, spinal tap days were absolute hell. Telling an 18 month old on steroids that she can’t consume large quantities of food for 6 hours is a totally heartless, miserable task. The day was spent weathering storm after tantrum after miserable breakdown. At the end of the day, I would feel like I had been in a rock tumbler for hours. Now, Elsa asks to “eeeeeat” or do “nana” and I simply say, “We can’t eat or drink until after Dr. Parikh puts the medicine in your back,” and she just shrugs and moves on to something else. Sometimes she asks to eat and I say, “Not until Dr. Parikh does what?” and she smiles and points to her back. Amazing! Granted, she asks to eat 15-30 times during the waiting period, but each time, when I explain to her that we have to wait, she quietly accepts her situation. I know this sounds painfully simplistic, but life with a two-year-old is all about these seemingly tiny, incremental shifts in their being that usher them forward out of their baby-ness and into being a kid. In the daily grind of our mom/daughter life, these shifts bring about little earthquakes that shake up our whole routine. This time, the change is for the better.

So Thursday was relatively easy, but, unfortunately, Saturday morning, at about 3AM, gifted us a fever of 102.2 and a trip to the ER. As an ER nurse myself, I find it especially difficult to bring my kid in for just a fever. I have seen hundreds of patients who bring their kids to the ER for a simple fever and the question [that I only ask in my own head] is, “WHY!?” “Why on earth would you bring your kid in for just a fever!? Keep them home. Tylenol. Hydrate. Snuggles. Done!” But to the ER we go, anytime her temperature is above 100.4. Doctor’s orders.

I was thankful that I didn’t see this fever coming though. Some nights, she feels warm to me before bed, so I spend the entire night tossing and turning, repeatedly checking her temperature and trying to refocus on some meditative tricks I have that distract me from my anxiety. I go through the alphabet from A-Z, thinking of words in Spanish. I go through the alphabet A-Z, naming animals. The anxiety I have about the possibility of an ER trip is killer. The actual ER trip, itself, is usually not as bad as the anticipatory anxiety.

Now for some other things for which we are thankful. Throughout this whole BS cancer thing, J and I have found it immensely helpful to constantly – and outloud – acknowledge the things that make us lucky. See, I even made a chart about it: Great Stuff/Awful Stuff So first off, whenever we have to go to the ER, we call the on-call oncologist and they make sure that the ER knows we are coming. The minute we walk in the door, they see Elsa’s little bald head and we get VIP treatment: ushered straight to a room, avoiding all the other kids and their germs. A nurse is in our room within minutes and Elsa’s blood is sent to the lab within 10 minutes of our arrival. So far, Elsa has never made a peep about being accessed in the ER – even though it is not her beloved Jeannie down in the ER.

Since CT Children’s Medical is a pediatric hospital, we don’t have to worry about all that scary stuff that goes along with a regular ER: drunks, trauma, cardiac arrests, etc. As an ER nurse myself, when I see a pediatric patient coming in, I run for the hills, hoping another nurse will get the patient. I am terrified of pediatrics. My tagline at work is always, “I’ll deal with all your drunks and change all your adult diapers if you will take my one pediatric patient.” Their tiny bodies, tiny medication doses, and terrified parents have always intimidated the hell out of me. Granted, since Elsa got sick, my feelings about pediatrics have been changing, but historically, I avoid sick kids. At CCMC, we never have to worry about getting a nurse or doctor who secretly hates pediatrics (like me!). Everyone there specializes in the wee ones and that makes a WORLD of difference. They actually like being around sick kids – go figure.

So this particular trip, we were there for about 4 hours total for a blood draw, a dose of IV antibiotics, and instructions to come back in 24 hours if she is still febrile. Her ANC was 1900 (it is elevated because she is clearly fighting off something) and we don’t have to stay unless she is febrile with an ANC less than 500. So far, we have managed to stay home and she does seem to be feeling better.

And now for the requisite pictures from our Thursday clinic visit:

Hiding in the curtains:
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Getting blood drawn is so much fun!
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Playing in the sink is serious business:
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February 28, 2012: A better kind of busy

Usually, I would beat myself up a little for updating so infrequently, but I must say that the reasons for my writing absence are all great.

1. We are busy! Elsa’s ANC has been high enough that we are exploring the world with very few restrictions right now. Aside from having clinic/chemo every 10 days this cycle, and going through 12 bottles of purell each week, we are living a normal, fun life.

2. I am busy Losing to Win! I joined a totally absurd (in a good way) weight loss program at the YMCA (Lose to Win!) with weekly personal training / weigh-ins and it has been just enough motivation to kick my butt into a healthier gear. I’m spending a lot more time thinking about/planning the foods that we eat and I’m making time for work-outs, even if it means peeling off some of the velcro that sticks Elsa to my body most of the time. Elsa hasn’t had much of a problem with the de-sticking process; the better she feels, the less she needs me so physically. Everyone involved feels better, I think. I’m packing in as much self-care as I can, while the waters in our life are calm. J, too, is trying to get to the YMCA more frequently and we are taking turns taking alone time for ourselves. Next phase of the re-building process should probably be that J and I take time for ourselves, as a couple. Slowly, slowly, we’re working on it.

Life is great today. I have such a hard time not adding the caveat, “The other shoe could drop any second! She could be sick tomorrow! I know everything can fall apart at any second!” That’s something I’m working on.

Life is great today. There. That’s it. Done.

………

Wait. Not done yet. Here is a funny little montage of approximately 45seconds in the emotional life of Elsa. If you’re wondering why we are eating hot dogs in the car, it was a little too windy for the picnic I had planned at the park, so we ate in the car instead. Minus the brief meltdown over a stolen goldfish, it was a lovely picnic (I couldn’t figure out how to make it bigger, but if you click on it, a larger version appears):

January 27, 2012: Hospital Room 810, in pictures.

 

First day. Fevers.

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Day Three.  Elsa finds my artistic attempts dubious.

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J and I were allowed to leave the 8th floor, as long as we wore a mask. It was just the 8th floor itself (the kitchen, the playroom, etc.) that was off limits. Elsa, of course, was not allowed to go anywhere.

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Day Three: Hanging with Grampy

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Day Four: Somebody please get this kid a blood transfusion.

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Day Four

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Day Five: Looking eerily like Day Four, eh? Yeah, that’s because it was.

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Have I mentioned before that she is a pretty intense kid? I mean, they’re just gnomes! Relax a little.

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A snack before they set us free on Day Six. For a combination of reasons, she refused to eat one bite of food for the entire six days. Had she not been nursing, we would have had to have some awful conversations about feeding tubes and supplementary nutrition. It felt funny to be supporting her on my milk alone, like when she was an infant. Plus, it was exhausting for my body and soul. That said, I’ll take nursing exhaustion over a feeding tube any day of the week.

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January 18, 2012: Clinic Roundup

We have had two incredibly long clinic days yesterday and last Monday. I hesitate to blame the hospital bureaucratic snafus because, if they happen every clinic visit, then I think they might not be actual snafus. As a nurse, I should know better, really. “Hospital Time” is 2-4 hours delayed past all your expectations and often, there is no reasonable explanation. Time gets sucked down the drain in tiny, imperceptible droplets until suddenly, you realize it’s dark outside and you need to order a dinner tray.

A week ago, Elsa’s counts were finally high enough to start the second half of Delayed Intensification (ANC 860). That day was 13 hours long due to a three-hour delay in the pharmacy making the kids’ chemos. The whole clinic was in chaos because of the delay, but Elsa actually sailed through quite pleasantly. Not to pat myself on the back too heartily, but I was impressed with her fortitude AND my own. We were a really great team all day, even in the face of her not being able to eat, drink, or nurse for 8 hours (in preparation for her spinal tap, which was then delayed). I was proud of us.

We have a schedule of activities that we put on repeat for these long days. All these activities are made just a little more interesting by the IV pole and short length of IV tubing that reaches from the pole to the port in Elsa’s chest. We are a clumsy, bumbling trio: Elsa, Mom, and the IV pole. So here’s the schedule:

Go visit the receptionists, Amy, Ruby, and Karen and play peek-a-boo. Check out the toys on the receptionists’ desks, which are always themed to the appropriate holiday. Go flip the switch for the choo-choo train that runs along a track on the ceiling. Smile, laugh, and exclaim enthusiastically when the train appears around the corner. Get bored of the train and head down the hallway and around the corner to the four seasonal paintings of trees. Find the tiny bunny in the Spring Tree painting and exclaim enthusiastically, “There’s our tiny, tiny bunny!” Tire quickly of these paintings. Check out what the other kids are doing in the exam rooms and see if anyone will invite us in for a visit. Head back to the waiting room and play with a few boxes of plastic figurines. Find all the plastic dogs and line them up. Now, knock them down. Say they are going “nigh nigh” and put “blankies” (little ripped bits of paper towels) on them. Wake up the doggies and exclaim enthusiastically, “Good morning doggies!” Knock them down again. Repeat until bored. Head to the DVD cabinet and remove, at least, 20 DVDS and then put them back. Walk down the hallway past the infusion rooms and see if anyone wants to invite us in for a play date. Return to our room and read books on the bed. Watch 10 minutes of a DVD of nursery rhymes with totally horrifying animation. The only movie that holds her attention is, of course, the most intolerable one for me. Watch until bored. Take off clothes (Elsa’s clothes, not mine!), sit on the counter next to the sink and fill the sink with no less than 37 paper towels, saturated in hand soap. Wait until Elsa’s feet are shriveled little prunes and she is ready to get down (which can take up to 45 minutes – Score!) Diaper change. Clothing change. Go visit the receptionists Amy, Ruby, and Karen . . . . .

After the third repeat of this cycle, it is just about as mind-numbing as it sounds. Then again, some of our leukemia acquaintances are currently experiencing some really tragic stuff. Awful, awful. We are acutely aware that mind-numbing boredom during a 13 hour clinic day . . . we’ll take it with a smile and a nod and a thank-you. We’ll take it and ask for more please. Boredom is good.

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Photos from our 13 hour clinic day on January 9th, 2012

Our trusty pump:

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Our trusty paper towel dispenser:

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Our trusty soap dispenser:

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A highly coveted nap!

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Getting ready for her 9th spinal tap – she’s an old pro now:

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One dose of ketamine and one dose of versed later and you have this: (* I love how it looks like her doctor is performing a magic trick behind her. . . or conducting an orchestra?)

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Sweet little back, recovering:

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December 30, 2011: Let’s stay with it.

I am writing for the sake of writing. Keeping the blog going. CPR. Resume compressions. I think I’ve done this before.

I’ve been meaning to share this photo for ages. Years even. Next to our coffee maker (which is truly, the most important object in my life), I taped a fortune cookie fortune to the wall. It was the best fortune I have ever received and it is the guiding mantra of my days – even before cancer snuck into our house.

I had planned for some grand entrance for my fortune cookie fortune, but this will have to do. I even think of renaming the blog sometimes: “not the end yet. Let’s stay with it.” Perfection.

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We are floating in limbo, waiting for the second half of Delayed Intensification to start. Tuesday looms on the horizon with new chemos (Cyclophosphamide, Thioguanine, and Ara-C,) and a spinal tap (Methotrexate). Blech. Drats. Shucks. Darn. Fiddlesticks. Fuck ‘em.

The dark cloud of steroids is slowly lifting, so that is drastically improving the quality of our life. I must say that they did take quite the toll this time around. Elsa is hobbling around the house like a 90 year old man in need of a hip replacement and she has a slight tremor which only furthers the “old man” image she is projecting to the world. She got an x-ray of her right hip this past Tuesday because her gait is so unsteady. Hopefully, she is just sore and achy from the steroids and we won’t have to explore scarier paths like Avascular Necrosis of her hip. See, I’m crossing it out just to teach it a lesson.

Her bottom is fiery red from a diaper rash the hospital so graciously bestowed upon her with antibiotic-related diarrhea. She gained 2.2 pounds in the last week, thanks to the guacamole she mainlined 24 hours/day for the past week. Shiny, puffy cheeks and taught, stretched belly returned to give her that extra “Something is very wrong with me but I’m still cute” look. Plus, all the hair she had grown over the past few months jumped ship. There is something about the hair loss that just screams, “Get us out of here! This body is poisonous!”

Sometimes I just look at her and think, “Really? This is my daughter? My sweet girl?”

Just like she bounced back from those first 29 days, and we enjoyed sporadic moments of normalcy over the last few months, I assume that will happen again. I am learning that these dark days are cyclical and, so far, they have always been followed by relief and release. No reason to assume otherwise at this point.

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Gosh. I think this all sounded more melancholy than I intended. To be truthful, today, I had a great day! I think it is just that it is midnight and I got all caught up in an I-Hate-Steroids frenzy. Today was a good day. I got time to myself. Therapy, even! Elsa played with her Grampy and her Auntie Cardeents. I managed to reply to a few more emails that are months overdue (truly, they are emails from August). Look, I’m writing. Writing always helps.

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Elsa and her puffy cheeks at clinic this past Tuesday. No chemo, just blood tests and an x-ray. The light in her eyes hadn’t yet returned, though steroids finished 24 hours prior. Slowly, she’s getting her glow back.

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