Hurry up and wait

Hope was happy to get to clinic today. She eagerly got dressed, grabbed her jacket, put on a mask, and practically skipped to the front door, as we chatted about seeing her nurse Lisa, the routines that have become so familiar, and getting her band-aid before we leave.

We arrived at 9 for an hour of physical therapy downstairs and went up to clinic for her blood draw. She got hooked up to a giant bag of saline because if her counts are high enough to get chemo today, one of the drugs can cause bladder damage unless you are swimming in fluid. Then we wait. Watch some Barney. See the bubble-blowing clowns that wander around the hospital entertaining kids. And wait. Do some "cooking" and meet a new friend in the playroom. Red blood cell and platelet counts come back looking good. Platelet count is one hurdle for starting her next round of chemo and she surpasses the threshold by a mile. And then we wait for her ANC. Walk around the clinic and do some dancing with a couple of nurses. Have a popsicle. And wait.

In the end, her ANC was 280 - not even close to the required 750 to restart treatment. So we wait for some prescription refills and discharge paperwork. Next Friday, we try again.

Princess Hope Needs a Break

Hope's sweet school friend Ginny (and her lovely mama) sent Hope a fancy pink princess dress with a crown and wand. She has really taken to wearing it this week - and looking at herself in the mirror! She was particularly pleased to see that the dress matches her newly pink toenails (thanks to big sister Celia, her pedicurist).

Today the princess had another spinal tap with chemo, and then one more chemo treatment upstairs in clinic, before being cut loose in the early afternoon. We return tomorrow for a blood transfusion (red blood cells = instant energy booster!). But then, she gets a break. She has a week until her next appointment. Her counts are probably still on their way down for a few more days, and then we wait for her marrow to recover from this month-long onslaught - and then we start all over again.

Resilience

Yesterday was Hope's 7th time in the operating room - her 6th lumbar puncture - her 5th dose of vincristine  and her 2nd dose of peg-asparaginase - and the 5th time they have accessed her port. Each one of these things is more than a kid should have to handle. It's more than I can handle, and I'm just watching. But Hope has gotten to the point where after all of that and six hours in the hospital, she puts down the iPad and marches (literally) down the hall to the clinic playroom, with me chasing her after her with the IV pole.

The night Hope was diagnosed, a nurse in the ER was trying to get an IV into Hope's arm and, not surprisingly, Hope was wailing and putting up a fight as we tried to hold her still. The nurse commented that what made her sad was when the kids stop fighting because they get so used to be poked and prodded. At the time, I was put off by this. Didn't she realize that Hope was entering that world? That soon, Hope would be the one so used to pain and discomfort that she would give up fighting?

I thought about that moment on Wednesday as we sat in the pre-op area. Hope is getting used to it. She only resists a little bit when I hold her arms so her nurse Lisa can access her port. She sits on the operating table as the anesthesia creeps through her line and lets me lay her head down on the donut pillow. She purses her lips to ward off the oral med coming at her, but then acquiesces and swallows it down. It makes me a little sad that she's getting used to it, because no one wants their child to have to be used to these horrible realities, but it also makes me weirdly proud that she is so resilient.

At the end of our clinic visit, she puts on her little mask and says goodbye to each nurse and tech she passes, and giggles her way to the door. How does she do it? She lives each moment - and I'm trying hard to follow her example.

Today's glorious weather was matched by Hope's mood. In the late morning, she announced that she wanted pizza at Frank's - our favorite pizza place near the big kids' school. With a mildly better ANC (590, yesterday), she put on her mask and climbed into the car. She was so happy to be out and about. She ate the crust off of two slices and then came home to amaze her physical therapist with the progress she's made in the last week.

Then just before dinner she followed Quinn and Celia outside to play with sidewalk chalk and race up and down the sidewalk on the scooter. Her hopscotch performance was astonishing.

She's back

She's laughing - really laughing, like belly laughing. She's playing. She's moving around. She sat at the table to eat a few meals. She turned off the Barney!! It feels like Hope is back, and it makes everything so much better.

Monday's immunoglobulin infusion was kind of a disaster. They premedicate with Benadryl and Tylenol because reaction is fairly common, and then they infuse it very slowly. After two quiet hours, including a nice nap, Hope woke up screaming and shaking. They immediately stopped the infusion and gave her hydrocortisone. Twenty minutes later she was fine, but it was scary, and the whole day was a waste. 

The rest of the week had ups and downs: Tuesday she had a great day of regular home stuff. A visit from our wonderful OT Pia, who Hope adores, and a first visit from a new speech therapist. (We miss you, Erin!!) Wednesday was a really long day at the hospital with yet another a trip to the OR (spinal tap with chemo and a bronchial scope to check out her airway because of some noisy breathing while she sleeps). Then back upstairs to clinic for more chemo; we had to wait for a long time because there were no rooms in clinic, and at one point they ran out of IV poles. It was a stark reminder that there are just too many kids with cancer... 

She is tolerating this second week of this round of chemo remarkably well. Her mood is good. Her energy level is much higher. But on the downside, her immunity is literally rock bottom. A normal ANC (absolute neutrophil count - the number that measures operational white blood cells) is between 1500 and 5000; below 500 is considered "neutropenic" requiring her to wear a mask, not go out in public much, etc. Wednesday her ANC was 90; today it was officially 0. Yikes.

We went back and successfully got immunoglobulin today, and she'll get more red blood cells and platelets on Monday. Lots of clinic time, but she is hanging in there.

 

March updates

Here are some posts from the month of March so you can see how we got from there to here...
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6 weeks = 6 months

posted by Liz Zogby on Sunday, March 30, 2014

Is it possible that time is slowing down? The last six weeks since Hope's diagnosis feel like an eternity. I almost don't remember what life was like before Valentine's Day.

We spent six hours in the ER tonight because Hope had a low-grade fever. Anything over 100.4 requires a call to our doctor and a trip to the ER for a work-up and antibiotics. They worry about blood-borne infections and need to culture a blood sample to make sure that she's safe. It takes a long time to access her new port and infuse the two antibiotics and monitor her before we can go home. But we are home now and she is fast asleep. Whew.

It was a long week. She started her new phase on Wednesday and had chemo Wed-Sat. We had home-health nurses come here to give her chemo Thursday-Saturday, but we also ended up going into clinic on Friday to get red blood cells. And tomorrow it's back to the clinic for immunoglobulin to boost her infection fighting power.

Through it all, she is beautiful and strong. She understands about the blood pressure cuff "giving her arm a hug" and the pulse-Ox being "a light for her finger." She deals with the meds and the needle sticks and still says "thanks" when the nurse brings her water and gives the doc a high-five when she leaves. I tell ya, that girl is an inspiration.

Today she inspired her amazing cousin and aunt to run in the pouring rain in the inaugural Race for Respect in DC for Down syndrome awareness. They raised $1800 for the Chesapeake Down Syndrome Parent Group.

ZERO

posted by Liz Zogby on Thursday, March 27, 2014

Big news arrived during our marathon day in the clinic yesterday. We arrived at 8 am - she had her new central port accessed for the first time, a lumbar puncture with chemo, and two new chemo drugs by IV (with loads of fluids to avoid bladder damage). And some anti-nausea meds and another new oral chemo drug. Whew. We shut the place down - truly, we were the last people there. But at the end of the day we sat down with our sweet young doc, a pediatric oncology fellow we call Dr. Joe, because when we first met him as inpatients, he was wearing a mask and Hope thought it was her Uncle Joe. Dr. Joe (aka Gordon) is a good sport and doesn't mind the nickname at all. Anyway, we came to tell us that the bone marrow sample from the end of induction showed had ZERO MRD (or minimal residual disease) - it's the very sensitive analysis to detect cancer cells (up to one in a million cells). Again, it doesn't change our treatment protocol but it is great news for prognosis.

Delay or Reprieve?

posted by Liz Zogby on Monday, March 24, 2014

Mondays have been days for procedures since Hope's diagnosis. She has spent part of every Monday, save one, in the OR getting bone marrow tested or a lumbar puncture. We arrived today at 8:00 am to begin the Consolidation phase of her treatment - a lumbar puncture, plus 2 new chemo drugs by IV, plus a new oral chemo. Turns out, I have lost track of the date and her appointment is Wednesday at 8:00. Oops. Luckily she had only been up since 6:30 complaining about food, and I had some snacks with me, so she ate immediately. (My dad had taken the 7:00 am Acela to Baltimore to come with us, as Greg needed to work today. Sorry, dad!)

So now we have two more days to dread the upcoming phase and worry about her blood counts, and wait for the new clock of 56 days of Consolidation can even get started. But on the positive side, she has two more days to feel better. This weekend she really seemed more and more like herself. She painted, she laughed at her silly sibs, ate a slightly more expansive diet, slept more soundly, and even started walking a little bit. A couple more days of healing before the next round is probably a good thing.

 

End of "Induction"

posted by Liz Zogby on Sunday, March 16, 2014

Tomorrow is the last day of Hope's first phase of treatment, called Induction. We give her the last dose of steroids tonight (yay!) and then tomorrow (during another #$%& snowstorm!!!) she's getting a central port put in (so they can give her chemo and other IV fluids, and draw blood more easily for the duration of treatment), another bone marrow aspiration to see how much progress we've made, and a spinal tap with chemo. It's sure to be a horrible morning since she can't eat and her OR time isn't until 12:30. Oh, and we'll have to dig the car out and slip and slide all the way to Hopkins... But it feels like we are getting somewhere to put one phase behind us. I'll try to post an update after the procedures. Then on to "Consolidation."

Six Days and Counting

posted by Liz Zogby on Tuesday, March 11, 2014

The first month of treatment involves a LOT of the steroid dexamethasone, which kills lymphocytes,or cancerous white blood cells. We were warned before we started treatment that the dex would make her really hungry, and could change her personality making her irritable and prone to tantrums. It's all played out as predicted and now we are counting the days until the steroids end. Six days - and then another week for the effects to wear off. Her food cravings are comical - anything salty and crunchy: rice cakes, potato chips, bacon, pizza crust (no cheese or sauce), crackers. And this weekend: an entire baguette every day. She has a serious moon face and quite a belly. Less comical are the tantrums, which are so unlike our usually happy kid. While we are assured that we will look back fondly on these days of nonstop eating when we hit later months of chemo that make her nauseous and unable to eat much, we are looking forward to having some good days when she acts a little more like Hope. And did I mention the constant drone of Barney in the background? We are also ready for a little more energy so we can replace the iPad with some toys. One foot in front of the other...

Rapid Early Responder!

posted by Liz Zogby on Tuesday, March 4, 2014

We got GREAT news tonight! Hope's bone marrow sample, taken during yesterday's snowfall, showed 1% blasts (or immature white blood cells). Since 5% is "normal," Hope has technically reached remission in the first two weeks of treatment and is labelled a "rapid early responder"! It doesn't change her treatment protocol much, although we do avoid one particularly nasty chemo drug that has potential cardiovascular side effects, but it feels really big psychologically. We'll take good news when we can get it.

Pre-Snow Update

posted by Liz Zogby on Sunday, March 2, 2014

When snow keeps schools closed for the umpteenth time, it's annoying, but when snow threatens Hope's treatment schedule it's infuriating! We are scheduled to go to the Hopkins clinic tomorrow for a bone marrow aspiration and chemo treatment. The bone marrow test will give us a sense of how Hope has responded to her treatment protocol so far - and label her as a slow or rapid responder, which slightly alters her treatment for the next two weeks. The idea for this first month of treatment is to blast her into remission, then spend the next 6 months hunting down any cancer cells that are hiding, and then spend 2 years making sure it never comes back. We want to stick to the schedule!

We got home last Tuesday after 11 days in the hospital. We are so happy to be with Celia and Quinn, but it's hard to be home. The steroids that are a mainstay of leukemia treatment make Hope crazy hungry all day long, and occasionally just crazy. So far a constant diet of Barney episodes, rice cakes, bagels, pizza crust, and potato chips seems to be the best way to keep her happy. Not exactly what we are used to.

Thanks for all you have done to support us as we set out on this road. Your emails, notes, and wonderful meals have made us acutely aware of how lucky we are to have such a loving group of family and friends.