Testing...Testing..Is this thing on?

I called to Brian through the window as he tended his vegetable garden, "Marta (our nurse case worker) called with Millie's counts. Her ANC is 8500".

Brian echoed my thoughts with his response.
"So that was it? She never dipped lower?"

She really sailed through round four. She only threw up once, and only took anti-nausea medicine for one day. She had good energy, ate well all week, and her counts never dipped to severe neutropenia levels.

Brian and I had to wonder - "If this is not wiping her out, how can we be sure it is wiping out the cancer?"

I mean, the girl has a healthy head of peach-fuzz baby hair!

I suppose we should just be grateful for her resiliency and leave it at that. But our jobs are to worry.

We have another MRI and CT Scan coming up in a few weeks, so I suppose we will be answered then.

We'll be in the hospital this week until Thursday evening for Round 5. I hope Millie takes this one in stride as well!

The Care and Feeding of a Cancer Patient

Each day we write Millie's checklist on a small whiteboard at her table place setting. The checklist helps to keep any surprises from upsetting her, and helps her stay in control of her care.


A typical day would state:

Zofran (antinausea medicine) [ ] [ ]

Blood Draw [ ]

Oral Care [ ] [ ] [ ]

Shot [ ]

Homework [ ]

Flush Lines [ ]

and I try to include some fun things like

Walk [ ]

Movie [ ]

We have a whole pharmacy on top of Brian's dresser. I bought a scrapbooking materials case to use for all the items that we access daily. Latex gloves, facemasks, broviac line care supplies, blood vials, alcohol prep pads, syringes, and countless bottles of medicines are somewhat neatly organized and serve as a constant reminder of our new life.

Here is a link to a parent teaching handbook on broviac care in case you are interested. Just to see all we've learned!

Millie has been off the appetite stimulant for over 2 weeks, so her appetite has "normalized". She eats enough for us not to worry, and even chose some spinach and carrots yesterday. She seems to currently subsist on Ritz crackers, cheddar cheese slices, and apples- but each day brings a new craving. A constant crave is for tuna sashimi and chicken katsu from Hiro's restaurant in Petaluma. Our oncologist said it was ok for her to have the sashimi now and then- but Millie could eat it every day. We are holding her back to 3 times a month.

She only drinks milk and water-which was true before cancer as well.

The weather has changed here in Sonoma County, and my outlook has thankfully brightened. I was hit pretty hard with "THE DARKNESS" in the hospital last week. I think seeing Millie in angel garb took me to places too dark and deep to escape. I wrote my new friend Jen, whom I met on Facebook and whose son Noah was diagnosed with Ewing's 1 month before Millie, and asked how she kept the darkness away. She wrote me a long and heartfelt response, including this line: "...the only feeling I can give anymore is love. It's not dark. It's easier than dark." I try to keep this in mind, as I realize that when I go to dark places in my mind it is really out of selfishness and fear- neither of which I can show to Millie during this time.

So, with the sunnier weather comes more outdoor time. I am trying to run a few times a week and am getting my road bike in shape for a first ride this Sunday. We are gathering a Milliways team for the upcoming Beat Sarcoma fun run on April 25th. Join us! Beat Sarcoma: Fun Run 2010 - Keep the date!

"This hospital blows!"

That was the text Laura sent me in reply to my text about circling the Kaiser Oakland parking garage for 20 minutes, hoping a spot would open up. The ancient parking structure has 5 levels, one building goes up, you cross on the roof, then another building takes you down. If you don't find a spot you get to do it all again. It's sad to think that there are so many people in the hospital that parking can't easily be found, but it's February and alot of oldsters get sick. They pilot their 70s-era Buicks around the tight corners, made all the more unnavigable by re-design, re-striping and putting up barriers to cram even more parking spaces in. It takes your average octogenarian about 5 minute to get in their car and back out, while a string of a dozen cars wait for a spot. It was difficult to park when we first started visiting, but this week it was nearly impossible. Laura texted me that Millie kept pointing at the clock in silent query, "Where the heck is daddy?!?!?" My parents and I finally exited the garage and drove the two blocks to the Mosswood Kaiser facility (where Millie's oncology clinic is) and used the valet there. When the attendant asked what floor we were going to we stammered, "Oh we're going to the hospital." He replied, "This isn't the hospital." D'oh! Long pause, we all exchange glances, and finally I manage, "Oh, the clinic is on the 14th floor, right?" My mom: "Oh, right... 14th floor." Knowing glance from the attendant. "Okay, here's your ticket." Whew! Close one! Hey c'mon it's all Kaiser, right? What a freeking nightmare... but we all had a good chuckle about it when we gained our freedom.

So for those of you who may be concerned about Laura's state of mind after that angry post, please rest assured that on our visit we found mama and Millie in great spirits. We arrived just in time for mama to skip out for an hour-long yoga session which seemed to refresh her, and Millie was as cute and vivacious as ever, all smiles for daddy, especially if she gets to abuse me with her favorite tactics: a tweak of my nose, or if I happen to be facing away, a roundhouse slap on my behind. I brought her some of her favorite white food freshly prepared at home that morning, and she devoured 4 hardboiled eggs (whites only) and a few large chunks of roasted cauliflower (I cooked two whole heads this time - it goes so quickly). So apparently nausea/appetite doesn't seem to be an issue.

Millie made five beautiful valentine paintings (she's becoming quite accomplished!) with Oma in the art room while Laura, Opa and I ran for Greek takeout on Piedmont Ave. Delicious gyros with garlicky tzatziki were consumed by the four us in the visitors' lounge (recently filled nearly to capacity most of the week with the multiple-generational and very worried Latino family of a youngster in the ICU next door) while Millie gobbled up an entire side order of pita bread.

So despite the crowding, the inconvenience, and the just plain Orwellian austerity inherent in extended hospital stays (what hospital is pleasant, I ask? even California Pacific in SF where Griffin was born, was drab, clinical and alienating), they seem to have adjusted. A good night's sleep helps, and and Laura finally got the nurse to do the job she was doing of being diligent about Millie using the potty during the night (after all, chemo pee is highly toxic) and was able to sleep through most of the night. I'll admit that despite the surroundings, I'm quite impressed with the entire staff. Nurses are the angels of our society. Millie's not nearly as put off by the environment as mama is - she's even given in and made friends with precocious Vanessa, her roommate.

They've lifted the ban on children under 14 as visitors, so Griffin's absolutely stoked to come with me to bring the ladies home tomorrow. And we've arranged for a date night on Mardi Gras Tuesday when we hope to "couple date" with the Joneses at Central Market restaurant where chef Tony, a native New Orleanian, will prepare a special menu, then finally see Avatar before it disappears from the big screen. Little pockets of life as normal make all of this much easier, as do friends, and the resiliency of our little superhero Millie.

About the above photo, Laura says: "She went to each door and touched it with her wand. A woman with a sick baby in her arms was in the hall, Millie touched the baby and the woman to give them love. In the playroom Millie removed the pieces of the wooden puzzles to spread surprise love and then put them back, so the children playing with the puzzle would receive the love."

Our Sweet Valentine

Sue and Maggie came by last night with cupid accessories and valentines cookies to decorate (and some wine to share!). Millie decorated plates of cookies and gave them to the nursing staff. We are not very fond of the hospital, but sure love the nurses.

Millie has managed chemo well, and has had no vomiting. She had a great day yesterday as her daddy and grandparents (Oma and Opa) visited, and she spent over an hour in the art room with Oma painting valentines.

We both slept pretty well (lights were off, it was quiet, and supernurse Gloria managed Millie's care).

I am so amazed at Millie's Cause on Facebook! We have over 140 supporters- and are continually grateful and overwhelmed at the love we're shown.

The Hospital is No Tea Party

Oh, I just want to scream at the walls and pound my fists.."THIS SUCKS THIS SUCKS THIS SUCKS"

Mille pulled me close at 9:30 last night and whispered "This is the worst night ever".

We still had not been officially entered into the new HealthConnect system (our hospital went live with electronic records during the week we were home), and therefore could not get Millie's oral care to her. Each medication receives a printout with a barcode which is scanned along with Millie's barcoded wristband prior to administering.

I found myself watching with more amusement than impatience the 3 backsides of the nurses huddled around this new mobile computer as they worked out the complexities of scanning and entering the multiple bags of fluids, medications and chemotherapy that were needed. We got to the hospital at 2:30pm and were finally in the system at 10pm. Chemo started at midnight.

I could rant and rave through this whole post about how the rooms suck, our roommates suck, the food sucks, the new computer system sucks, and how life just sucks for a parent in a pediward. I wish I could make it funny.

Even my devious scheme of smuggling in amaretto for my nightly hot chocolate failed with a burned tongue accompanying the inaugural nip.

Did I mention my back hurts?

And the mother in the adjacent bed thinks her daughter is afraid of the dark, so insists on the lights left on all night? And that her alarm on her iPhone went off for 15 minutes this morning at 5:45 with a ringtone of a hiphop duo shouting:

"IT'S PEANUTBUTTER JELLY TIME! PEANUT BUTTER JELLY TIME! PEANUTBUTTER JELLY WITH A BASEBALL BAT".

Over and over and over again. I shook her, I tapped her, I put her phone under 2 pillows. Still, the befuddling and repetitive lyrics were shouted to the room. After more vigorous shaking, she finally woke up and mumbled "sorry" and turned off the phone.

I am pretty sure I slept from 12:30am - 2am and from 6:30 to 7:30. In the between the two dozes, we changed Millie's bedclothes and nightgown twice and, of course, were serenaded by that abnoxious ringtone.

I am hoping for a better night tonight.

One thing we learned today is that the miracle anti-nausea cure I touted in an earlier post is actually a steroid that causes extreme crankiness. Can you say "Roid Rage"? I guess I am happy to know that when Millie is in the hospital reacting to me like a 13 year old who got her cell phone confiscated, that it is the decadron to blame. 'Cause let me tell you she can get mean.

But hey, it is not about me here. This is not a hotel, I am not a client. The doctors and nurses are doing everything they can to save Millie's life. And, although they toss me a compassionate word now and then (a nurse asked me at 4:30 today if I was doing better, as I looked like I was having a tough day earlier when she had seen me), they are not here for me.

And I am not here for me.

Thank you to all of you who are here for me in my stead.

I really am living a grateful life and am astounded and amazed at the love shown by so many to our family.

And appreciate the opportunity to rant, no matter how petty and insignificant my complaints are. It is kind of fun.

Round 4

We're grateful that we had another uninterrupted stay at home between chemotherapy rounds. Although her hemoglobin is still low, we did not have to take her for a transfusion. She also predictably dipped into neutropenia and suffered mouth sores, but never spiked a fever. We know that we cannot expect these quiet rests between hospital stays, but are so happy to have them.

We head in today for a 5 night stay- and I have heard from the pediatric ward that they are having a hard time fitting all the patients in the rooms. This does not bode well for our stay, as we certainly will be in a shared room. We'll just consider ourselves lucky if we are not put in a 3-family room.

Brian has lined up a busy schedule for Griffin this week, with lots of friends and activities after school. Griffin does seem down, however. I know our long stays are hard on him- he misses his sister and his mama. And we miss him so much!

Our friend Anne started a Facebook Cause page for Millie and the Carousel Fund. Please check it out if you are on Facebook! Here is the link:
http://apps.facebook.com/causes/444151

We hope that this week goes smoothly- controlling the nausea and allowing sleep. I will post from our room tomorrow.

Swinging Through Round 3

I loved this picture Annie took of Millie from our walk to the park yesterday. Millie has managed round 3 very well, with limited side effects. She was only on anti-nausea medication for 2 days following the chemotherapy, and has not had problems with pain, loss of appetite, constipation or energy levels. She will no doubt dip into neutropenia again by Thursday or Friday- but we hope we can stay out of the hospital. Her hemoglobin count is waning, and we may need a transfusion by the end of the week, but we are able to do this outpatient and perhaps in Santa Ros

Post Script- Saturday- Millie's counts have been down yesteday and today- meaning she is suffering mouth sores and a sore mood - but we've made it through another bout of neutropenia without spiking a fever (no hospital!)

We also had a visit last night from Arnie and Susan Cohen of the Carousel Fund. As I have now used all my vacation and sick time and am starting my leave this week, I looked to my first unpaid Monday with nervousness. The Carousel Fund helped us analyze our finances and medical costs for the coming months and swiftly cut us a check to cover several months of our anticipated deficit. We are overwhelemed by this generosity and feel so lifted. We are so very grateful to be a Carousel Family.