Gratitude

As we get closer to the end of the chemotherapy treatment cycles for Millie, our new life looms in front of us, open and challenging with hints of freedom. In the last 8 months our lives have been turned upside down- with me being laid off, Brian working 6 days a week (abruptly after years of being a stay-at-home dad), and of course, this little change called Cancer. The topsy turvy ride of our employment situations seemed par for the course with all the other emotional cartwheels we've been experiencing- but now we see some stability with Millie in front of us: the kids return to school on August 16. Just weeks away. The reality of being through with treatment, back to school, but yet still in this career upheaval with the medical bills still streaming in gives cause to, um, freak out.

Which brings me back to gratitude- to gratefulness for so much when things seem so crazy. I am grateful that Millie is unbelievably strong. She has tackled this chemo while letting it tackle the cancer cells. She is my giggly girl for much of the time, ever snuggly and ever playing with her brother or her close friends. I am grateful for her brother and her friends, never expressing anything about her unusual appearance or limited energy. They accept her, play with her, and giggle alongside her. (And we always think of elementary kids as being so mean.)

And I am so grateful for the support of our community- the local, the virtual, and my industry.

On July 13, my industry organization (Site) combined with another organization I am active in (the Green Meetings Industry Council) and produced an event aboard a Hornblower cruise ship, (Hornblower donated the cruise!), to raise money for Millie's care. There were about 100 people in attendance, with me humbly in their midst. Wonderful food, wine, music, and a slient auction enlivened the atmosphere as I enjoyed chatting with so many supportive colleagues. A copy of the chapter newsletter with chapter president Carol Chorbajian's summary of the event is found here.

The big raffle item for the event was a 32gig iPad donated by the San Jose CVB. The winner, Doug Phillips of the Monterey Plaza Hotel (see my April post about our trip to Monterey which was made possible by Doug and my Site colleagues), gave his gift to me to take to Millie. (I can tell you here that by 9pm on July 13 Millie had figured out what an "app" is and how to ask Mama for her password to download.) All in all the event raised over $5,000 for the Carousel Fund and towards Millie's medical bills. Amazing. I am humbled and lifted.

We also are thrilled to see our dear friend Marie's card line launched, with a percentage of proceeds going directly to Millie's care. Check out www.februarystarsinc.com for some examples of her beautiful work.

The support of our community, of you, has meant so very much to us. From a simple voicemail or email offering words of hope or love to these acts of magnanimous charity that lift us above the darkness- we are indebted, humbled, and wanting to reciprocate.

Never thought I'd be so happy for 102 degrees

A quick post here to let you know that it has been a tough couple of days for Millie. We got home from the hospital Friday, and by the afternoon she was complaining of a headache. I took her temperature at about 6pm and it was 100.5. Brian took it an hour later and it had risen to 101.8. At 101.5 we have to call the doctor and be admitted to an emergency room for IV antibiotics. The worry is that if she has a bacterial infection in her lines or otherwise, she doesn't have sufficient immunity to fight.

I was upset, as was Millie, to have our plans disrupted. We were planning a slumber party upstairs, since the kids' room had been painted by the Make-A-Wish foundation in anticipation of her room decorating on Tuesday, and most everything was out of the room. We had big plans for Saturday as well, taking part in a luncheon event in Japantown SF with the Children's Cancer Community- then heading to Napa to visit and spend the night with our good friends Sue and Fred.

I need to remember never to plan any thing! I need to just move like a babbling brook, wherever the current takes me.

Millie and I drove up to Santa Rosa to Kaiser Hospital and were admitted right away to a room in the ER. (Yay for Santa Rosa Kaiser Emergency BTW- they are awesome!). By the time we got there her fever was 102.8 and had risen another degree by the time we left. In the mean time they took a blood culture to check for bacterial infection and administered a dose of a strong antibiotic through her broviac lines. Millie slept a lot on the bed, but her head was really killing her. She told the nurse her pain level was a "10". This is from a girl that when was recovering from surgery on her leg never gave her pain over a 4. After much coaxing (over an hour), Millie swallowed the liquid Tylenol given to her for pain and fever. She is not good with oral meds. We got back home at 2am, and Millie climbed onto the sofa bed with Griffin upstairs and we had our slumber party.

I didn't sleep.

Saturday her fever was 104.4 upon awaking, and stayed at 103-104 all morning. She just slept on the couch and drank sips of ice water now and then. I felt paralyzed- with so many chores I could have been doing I could only sit next to her quietly and watch her sleep. The dry heat of her body was unrelenting-I kept my hand on her head or neck and waited for that telltale sweat of a breaking fever. Waited for her to kick off the blankets she clutched around herself, waited with water and washcloth.

After noon, she woke and desperately wanted to go visit our friends Sue and Fred (as did Griffin). Her fever had dropped to 102, so we made the trip across Sonoma and Napa Valleys to their home up towards Lake Berryessa. This in the absence of a functioning air conditioner in our car. Phew! Millie threw up in Napa. Poor thing! I questioned my sanity many times on the drive. Why didn't I just tell them no?

But, once at Sue and Freds, the kids really perked up, and MIllie didn't even feel warm any more. They played with all the toys and costumes and silly stuff that Sue keeps around for such occasions, had a nice dinner, and were sad to leave for our trip back to Kaiser Hospital for Millie's second dose of antibiotics. Last night at Kaiser was quicker-and we were home by 11:30. I honestly cannot remember ever being as tired as I was when I sank into bed last night

Our First Delay

We should be heading into the hospital for our penultimate chemotherapy cycle...but alas Millie's bone marrow has tired out and her platelet count is not sufficiently high to start chemo. We will check again on Wednesday with hopes to go in on Thursday. We are pretty amazed (as well as the doctors and nurses) that she has made it this far without delays- so we just need to be patient in these last weeks.

Millie is doing well- cheerful and energized by her constant companion Griffin. Having him home from school has really increased the giggle quotient in our household!

Two big events are happening this week- the first is a big fundraiser for the Carousel Fund that my industry associates are throwing today in San Francisco on a Hornblower Cruise, and the second is the dream room makeover being coordinated by the Make-A-Wish Foundation. I will post pictures and stories from both soon.

Independence Day

It is early Sunday morning here on the 10th floor at Kaiser Foundation Hosptital in Oakland. We're due to be discharged in a few hours after 5 nights here completing cycle 12 of chemo.

We have a large 3-bed room to ourselves after a roundrobin of roommates finally cycled out, leaving us remaining on this holiday weekend. Millie is sleeping, surrounded by 5 stuffed animals, as the rising sun brightens the buildings of downtown Oakland out our window.

Our night nurse, Hing, was tickled to find the true purpose of Millie's cadre of stuffed animals. Millie chooses them at home not for their comfort or softness, but for their size and weight for hurling. They are zipped into her rolling backpack for the hospital trip, and one by one are thrown at my head in the night when Millie requires assistance with the bedside commode. I am reminded of James Thurber's hilarious short story "the Night the Bed Fell" and the quote, (regarding a shoe-throwing and burglar-phobic aunt), "Sometimes she threw them all, sometimes a couple of pair".

We had a good stay this week. I worked with our doctor to reduce and revise the administration of decadron (the miracle anti-nausea drug I posted about months ago), as this drug causes terrible moodiness in Millie. With the new plan, Millie only had the drug every other day, and the dosage was cut in half. The difference was very noticable. Millie was cheerful and communicative, and took countless fast walks around the floor giggling as she rushed by nurses. Her new foot brace has given her great confidence- she loved racing around with me pantingly trying to keep up, pushing the IV pole behind her.

Millie was even social this week, choosing to enter the playroom when it was occupied by other children. (She usually avoids the playroom if there is another kid inside). She sat at the table and painted with another little girl while a little boy sat nearby playing with toys. The three kids were all here for chemo- and their long tubes from the IV poles were constantly getting tangled (parents laughingly quoting Ghostbusters "Don't cross the streams!").

I heard that there were 12 kids here for chemo this week.

Millie is stirring now, perhaps knowing that soon she will be "hep-blocked" and detached from the IV pump. We'll pack up our things and scoot out of here in time to enjoy a Fourth of July with friends and family.

Next post I'll have to write about the Make-A-Wish foundation and Millie's wish to have a room remodel. Lots happening there!

She's a superhero!

Or superhuman, or something. Maybe they should do a study on her. This is unprecedented. She never even went neutropenic this week! Today should be her nadir (ie, when her blood counts bottom out and she's subceptable to all kinds of infections) but instead she's got flying colors on red, white and platelets! This is the part of the regimen where delay is likely because the patient's body doesn't rebound as quickly, so starting the next treatment is put off until their counts are good. Instead, she beats her recovery record by 3 or 4 days! She was a tad tired early in the week, and we suspected she'd need a hemoglobin transfusion, but no... now she's eating voraciously (always a good sign), enjoying time with her brother and family, swimming, playing, doing summery stuff while we redesign her bedroom and bathroom (more on that later) and aside from being completely hairless and still limping on her dropfoot you'd never suspect she was ill in any way. Know why? Because she's not! As far as I'm concerned she's cancer-free and has only three more treatments to go. Then we're going to Disneyland!

Starting Summer

It's ninety degrees today in Petaluma. Millie has been wearing summer dresses and trying to figure out how to keep her head cool under her hats. Her appetite has come back with the increased dose of megace we're feeding her each day. This last cycle of chemo was fairly easy on her- she did not develop mouth sores or nausea.

She had a playdate with her friend Caroline, and even climbed up the tubes at Chuck-E-Cheese during their lunchtime pizzafest. Her days with Caroline are very special to her. We are so grateful for this friendship, as Caroline's parents are both medical professionals, and Caroline's mom is a cancer survivor. Millie feels so comfortable with them-she trusts them to care for her, and can be hatless around them. Caroline's parents (Lisa and Chris) even changed Millie's broviac dressing (at Millie's request) after a swim session had loosened the covering. Brian and I have turned to Lisa and Chris many times with questions about injections, medications, broviac care, and navigating the oncology highway.

Millie went down to severe neutropenia again this week (as expected). I was watching her temperature climb last night, but it never got over 100.2. Today she was back to 98 and actively playing with her visiting cousin Andrew.

Our godchildren, Sydney and Sebastian visit tomorrow with their father and our great friend Scott. It is our first time having overnight guests since Millie was diagnosed- and we are eagerly looking forward to the time together.

Six Months of Cancer Living

Posted from the hospital during cycle 10 (5 days of Etoposide and Ifosfamide).

The months crawl by, and here we are six months from our first hospital stay. Winter turned to spring, and now summer teases us as the end of the school year looms.

Griffin has finished his second grade year largely without his mother or sister, and Millie's classmates are attending end-of-year picnics while Millie spends another week in the hospital bed.

Two of the kids we met when we started this journey, two "frequent flyers" on the 10th Floor Pediatric Wing, have completed treatment cycles and are home regrowing hair and looking forward to a wonderful summer. More kids started after us, and to them the halfway point seems far away. Two sweet young kids started recently- as they still have their hair and their families have that deer-in-the-headlights look.

And here we are, our lives still caught in these horse latitudes of endless hospital nights, but a breeze promises a push towards the shore. We can see the end, with only 4 more cycles to go- only 2 more 6 day stays to complete.

We can start to think about life without the hospital- our jobs, travel, holidays, school. It is a quickening now, realizing what we should accomplish while still in the stillness. House organization, photo albums to create, letters to write, (loads of thank-you cards), and preparations for re-entry.

Millie had a chest xray on Wednesday to check for any metastasis (ewings sarcoma typically spreads to the lungs). It came back normal. I feel that we are truly on the downhill slope!