Millie, Unleashed

This morning, for the 8th time in a year, Millie was put under general anesthesia. (I always think I am going to be better about it, but still find myself dry-heaving in a hospital bathroom stall as the arrangements are being made to take her back to surgery.)

Millie was more of a general than a trooper this time. She tugged on my sleeve to pull me down, and whispered urgently and firmly her desire that the doctor use a particular kind of anesthesia ("the clear kind, not the white kind"). The white kind, propofol, tastes like garlic to her. I told her I'd let the doctor know that she does not like the garlic kind.

She sat on the bed next to the elevators to surgery, with me distracting her as the anesthesiologst slowly pushed the anesthetic into her broviac tube. Her face reddened, and she coughed a bit- giving me a look of shock and anger as she realized she'd been duped. They used propofol after all. Luckily the moment was fleeting, as she passed out immediately and was off to surgery.

The nurse told me it would be quick, less than a half hour. She wasn't kidding! As always ( I can't believe I have such a routine for when my child awakens from general anesthesia), I went first to the cafeteria to find fruit salad and cheez-its. Then to the lobby to pick up my parents, who had once again volunteered to drive Millie and me so we could snuggle in the back seat, and back to the waiting area. Within a minute of returning to the waiting area, Millie was already in recovery. They must have taken her broviac out in 10 minutes!

She woke up well, rather quickly, and enjoyed the fruit salad chattily as we prepared to leave. We were on the road home by 9:30 after an 8am surgery!

I am looking forward to packing up our medical supplies (see http://bellways.blogspot.com/2010/02/care-and-feeding-of-cancer-patient.html ) and booking a teeth cleaning for Millie. She wasn't able to go to the dentist on treatment and with the broviac for infection concerns.

Millie's next scans will be in February. I am very curious, but not as scared as I was, to see if those areas of her bone marrow are growing or shrinking.

We'll post some pictures of Christmas this week- we are all so very grateful to have 2010 behind us, and to celebrate with true joy this Christmas.

One Foot In Front Of The Other

While she's out on a new job briefing this morning, Laura wanted me to make a quick update, since many friends and family have been inquiring and I guess we haven't gotten the word out sufficiently. The conclusive lab analysis of the biopsy found absolutely no cancerous cells in the bone marrow sample. We still don't know why there are depleted areas in various bone marrow locations, but no red flags have been raised, and one specialist even suggested that these anomalies shown in the scans are quite "normal".

(As I recuperate from a bad knee sprain that has me completely incapacitated, I'm imagining how many of these anomalies would show up in a bone scan of my thrashed body.)

The doctors are so certain of these positive results that they've scheduled an appointment for the surgery to remove her broviac catheter, or "central line" that is used for administering chemo and drawing her blood (it's a simple outpatient procedure that nevertheless requires general anesthetic). She'll still have scans every three months for two years, and less frequently after that, for which, unfortunately, she'll have to have a regular IV inserted in her arm (something she's not fond of at all, as you can imagine), but this step is a positive one forward, symbolic of the full recovery that we have faith in her having achieved, almost exactly one year to the day.

Congrats, Ms. Millie! Just in time for the holidays, not to mention the full head of hair just waiting to be styled in an Edie Sedgewick pixie do! We love you!

Millie's 7th Birthday Present: No Sign of Ewings in Biopsy

Today Millie turned 7 years old, and like a year ago she is limping along with pain in her right leg. Unlike a year ago, the pain does not seem due to any sarcoma activity- but merely the result of the biopsy procedure she went through yesterday.

One of the oncologists on Millie's team examined the slide from the biopsy today and determined that no Ewings Cells were present. (what a "present" for us!)

Here is the text of the email he wrote this morning:

Hi
I know marta told you, but there is no sign of ewings in the biopsy that was done yesterday.

It appears that Amelia's marrow space on that side is empty. That isn't rare in adults, most adults don't have marrow there. It may be a reaction to the stress placed on the bone, since the bone was very thick where the biopsy was done. Or it may be that she would have done this at this point in her life even if she never had ewings.
So happy birthday to Amelia and enjoy your holiday

Obviously Brian and I have a million questions as to why Millie has these areas of no marrow- and what this means for the future. Will these areas grow or shrink? Are her legs more fragile and susceptible to breaking?

The complete pathology is due in next week, at which time (should they come in clean as expected) Millie will get her broviac removed.

I have felt that my life has been hanging in the balance for the last 10 days, and still feel shaken and scared even with this news. I am looking forward to the big exhale when I can smile again and celebrate this great news. Perhaps tonight over Millie's birthday dinner and a margarita (or 2!) I will laugh and let the joy come back in.

Happy Birthday to my sweet sweet girl. You are so strong, so brave, and an inspiration to all who encounter your perfect giggle.

Altered Gait or Altered State?

I don't really have any updates since the last post, just that the bone marrow biopsy is scheduled for November 22 at 2:30pm in Oakland. Yep, that is the day before Millie's 7th birthday and 2 days before Thanksgiving.

We were unable to schedule something sooner due to the anesthesiologist's schedule, so we are just waiting in limbo to hear news of these irregularities showing on the bone scan.

The orthopedist/tumor specialist reiterated yesterday that he feels strongly that what we are seeing in the scans are "stress reactions based on altered mechanics of her gait".

I have been tremendously frustrated and blue for the last week, as I have personally viewed 3 previous bone scans in times when she was favoring her right leg, and have never seen these "irregularities". Yet I am trying to remain positive and confident that we'll get an "all clear" message on Millie's birthday next week.

Speaking of Millie's birthday- I thought I would post a link to her birth story. I posted it years ago on Mothering.Com, and you can still find it. This girl has a power evident from her first moments. Here is the link: http://www.mothering.com/community/forum/thread/461804/unexpected-unassisted-homebirth-just-baby-and-me

Negative Space

Dr. Bergstrom called this afternoon to update us on the interpretations of this morning's MRI. Although the areas in question do not look like relapse to the oncology team or the tumor specialist, they are none the less ordering a biopsy immediately of the largest area of "negative space" in her bone marrow.

Millie has a pocket of about 2-3 inches in her right femur that is not producing marrow- it is just a blank spot. This may be what is happening in the other areas we saw on the bone scan as well. The doctors are just not sure what is causing this, but it could be one of 3 things:

1- The marrow is just depleted in these areas from chemotherapy, which does happen frequently- but not usually in such a defined area. Usually the bone marrow is mottled in spots where it is just depleted.

2- The areas are stressed out or slightly injured/fractured from the extra stress from her foot drop and time in the cast, favoring the right leg, etc.

3- Something else could be happening that is cancer related.

The decision to go for a biopsy lets them look at her marrow under the microscope for Ewings Sarcoma or any cancer cells. This means she has to be put under again next week for this procedure.

Today she did very well according to Brian and his mom, who took her to San Francisco for the MRI. She is in great spirits tonight, acting cute and cuddly and hungry.

Brian and I are hanging onto the doctors words that this does not look like any relapse he has ever seen. They certainly saw no tumors.

I am trying so hard to be positive, although I just want to throw up and crawl back under the covers.

Do You See What I See?

As Millie sat on the large machine yesterday, radioactive material bubbling through her body, we could watch the screen draw a picture of her bones. This was the fourth time we had gone through this, so I was used to seeing this picture of her cute frame on the monitor.

As usual, I got my camera out to take a picture of the screen.

My stomach knotted up immediately and I felt dizzy as I noticed some black spots in the long bones of her legs that I had not seen before. A dark spot means "greater uptake" of the radioactive material- meaning some greater blood activity in that region. We finished the scan with me now pacing nervously as we were directed to the waiting room while the doctor reviewed the scan. As I expected, we were asked for more X-rays. The technician took pictures of her pelvis, her knee, her right tibia, and left femur. I saw the order for the extra x-rays which stated "abnormal bone scan" as the reason for the x-rays.

I asked to speak to the doctor interpreting the X-Rays, but he wouldn't give me any information on what he saw. After shakily texting and then talking to Brian, Millie and I drove home.

Every scenario was swirling around me, a crushing feeling of falling apart- that I couldn't go through this again. The words of one oncologist, 7 months ago, saying "we have ONE chance to get this". Thinking of articles I've read on Ewings Sarcoma and how the quicker the relapse denotes the worse prognosis.

I went home and called our nurse case worker and paced the room. She couldn't give me any information since the oncologist was waiting to review the scans with the orthopedic surgeon.

I was getting more and more upset and wound up, and retreated to the bathroom to cry in a warm shower.

A few minutes later Brian popped his head in and told me "I talked to Marta (our nurse), and she has said the initial reactions from the surgeon and oncologist are positive" He stood there, hoping for me to smile. "They say that no red flags are raised by these pictures- that the "low to moderate" uptake levels could mean other things"

I exhaled- but still shook in tears, finished my shower, and crawled into bed. Later, Brian made me some homemade redbean soup that got me out of bed- but I went quickly back.

Today I take Millie to the Oncology clinic for a checkup and her monthly pendamadine infusion. I will ask many more questions of our doctor, of course. Tomorrow we have a full MRI in San Francisco, where each of these areas will be analyzed for possible tumor growth.

I can't really express my feelings well right now- but just hope for a positive outcome as we near Millie's 7th birthday.

Safe and Warm

For months Millie has asked to go camping- from spring to summer to fall she was expecting to pack up the car and drive with friends to a spot in nature where marshmallows were toasted, beaches explored, trails hiked, and tents became castles. Of course we could never be too far from Kaiser Hospital all year, which meant no Tahoe trips, and no camping.

This past weekend we granted her wish- now far away from neutropenia danger, we were able to drive to Big Sur and meet our dear friends for our annual "Big Sur River Run 10K" and campout. A storm was expected, but the skies kept to a steady light drizzle on Friday and Saturday, even opening up to blue and sunshine on Saturday morning for our race. (The race was fun, as always, and I was so proud of my 9-year old godson for finishing the 10K in Tevas with about an 11 minute/mile time!)

Millie was happy to be with her friends and her godmother Annette, who drove up in her VW Westphalia. After the run we hiked a trail to the beach and enjoyed a dinner out. The clouds gathered and poured on us Saturday night, but we stayed relatively dry and warm in our tent. Griffin was sad to see us start to pack up in the downpour Sunday, as he was so happy and cozy in his sleeping bag reading Harry Potter as the rain tap-tap-tapped on the rainfly.

Millie seems healthy now, although she is complaining of a pain in her lower right shin (tibia). I am so skittish about any pain, I feel like calling the doctor to move up her scans. I am sure it is nothing, but anxiously await her scans on November 9 & 11. Once those come back clean she can have her broviac line removed.

She does seem like a different kid now, and we're loving getting to know her. We hear her singing to herself all the time in this quiet, high, singsong voice. She laughs more and runs more, is social and excited about friends, activities, and especially the theater classes she and her brother take at the local playhouse. She seems to be adjusting well at school, and professes to LOVE math. She wants to be a good student.

Here is a picture of Millie and Griffin with Butterscotch. You can see her eyebrows and eyelashes grown in- and of course that lovely soft fuzzy head of light brown hair.

Slow to Scribe

I am not sure if anyone has noticed, but I have been somewhat hesitant to update this blog with deep and personal feelings over the last month. I wonder if many might think that we've returned to normalcy and such musings are no longer a part of our lives.

Although life has taken a more steady turn for us, with the kids in school daily and no hospital visits, we are still very much in the thick of life with cancer. In reality, the reason I have been hesitant to pour it all out there is the result of nasty comments posted on the blog.

I realized suddenly, with the feeling of wind being knocked out of me, that this blog, our story, is out there for anyone to read. Why someone would think poorly of us, and speak ill of our travails this year is beyond me. I don't want to live in that world- yet that world and its trolls will come spilling through this huge open gate of the internet.

Surely I have been naive, and I am trying to find a good balance in telling our story while keeping ourselves protected.

I will at least give an update today. Millie had her 1-month check up with her oncologist and was found to be suffering no visible lasting effects from the chemo drugs. She was given an excellent report, but the oncologist would not call her "in remission" or any other positive terms of that nature. We have to wait another month for more scans and an MRI to make that call.

I am proud of my whole family as we push on and try for a normal routine after such a turbulent year. Somehow we are managing it- grasping to the hopeful signs and supporting each person in all the activities that fulfill us. The kids are taking piano lessons and going to theater classes at the local playhouse. I have started running again and am training for a half marathon in December. Brian and I are both becoming more involved in our community and finding time for friends and events.

Millie's hair is starting to grow back. She is beautiful. I have been showing her videos on YouTube of Sinead O'Connor- stunningly pretty and with such a powerful voice. Millie looks like a mini Sinead now- her scalp covered in maple colored peach fuzz. No curls yet.

The Happiest Place on Earth

We took an ambling, multi-point roadtrip to Southern California as a reward for completing chemotherapy. The highlight, to the children of course, was Disneyland. We stayed at the Disneyland hotel for 3 nights and visited the parks with the wonderful generosity of Brian's good friend Michael, who is an executive in production at Disneyland. Millie was able to meet countless princesses and fairies and Griffin spent hours exploring the newly themed Pirate Island (we still refer to this as Tom Sawyer's Island).

The trip was an opportunity to relax without thinking about medical care (except, of course, the broviac and dressing management) and to enjoy family time. Brian's mom came along with us and was a good sport about being caged with 2 wild kids in a minivan.

(Speaking of which, I am so proud to report that we drove the entire 900-ish miles with no electronic entertainment. The kids played imagination games, read, slept, and chatted the whole way)

Back to School

Millie went to school for 5 full days last week! We had thought that we would ease into a part-time schedule for her in the first months of school, as we expected that she would get quite worn out easily. Instead, she has been cheerful and eager to be in school each day.

As I mentioned in a previous post, she has expressed small frustrations as a result of being asked multiple times a day about her "tubes", her brace, and her hat. She came up with a solution on her own, and brought in on Friday her stuffed broviac monkey (see post and pix from January) and a doctor's kit of supplies to teach the class herself about broviac care. I wish I could have been a fly on the wall! I am so very proud of her. She also is going to bring in her cast and her bone-scan picture to share and discuss her surgery.

The above picture was taken during a video-interview with me and the kids for a documentary on the Carousel Fund. The kids dragged those huge bears (gifts from Arnie and Susan of the CF) outside to use as props for the video.

We leave on Friday for our trip to Southern California!

The Off Treatment Meeting

Brian and I drove to Oakland today for our official "off-treatment" meeting with our oncologist and nurse case worker.

We were sat in the same small conference room where we had our first meeting back on December 23, and like that time, we received a binder of information.

Our oncologist, Dr. Sharma, reiterated how well Millie did throughout treatment.

• Her cancer had not metasticized
• Her cancer reacted to the chemotherapy
• Her platelets rebounded consistently to keep to the 2x a month aggressive chemo schedule.
• She was only hospitalized one time for neutropenia.
• She was able to not only keep her leg, but did not need a bone graft or prosthetic.
• She did not receive radiation.
• Her heart, liver, bladder, and kidneys showed no signs of distress from the toxic chemo drugs.

All these things set her apart from so many cancer patients, and these things inch her "event-free" survival prognosis higher. The "event free" (no relapse or secondary cancers) long term survival range for non-metastic Ewings Sarcoma is 55-70%. Her prognosis is up at the 70% mark.

The meeting was called to go over some of the long-term effects of chemotherapy and to discuss the plan for the coming months and years. We discussed the possibility of secondary cancers (two of the chemo drugs are known to cause lymphoma and leukemia), the possibility of delayed or limited fertility, organ damage, and other fun things!

We also spent a long time discussing Millie's drop foot, and received a promise that her recent MRI will be reviewed by a pediatric neurologist to look at the nerve and muscle pathways that affect dropfoot.

One area on which we did not spend a lot of time is emotional health- as we are happy to report that Millie is doing very well at home and at school. She was supposed to go in to the clinic for an infusion of pentamadine while Brian and I had this meeting- but she preferred to be at school. She is making new friends and feeling pretty comfortable in class. (Although she says she is tired of explaining to classmates about her broviac tubes, her brace, and her hair- I may address this with her teacher to find the best way to answer the students' questions while respecting Millie.)

I must write that although this is a wonderful milestone, and we are thrilled to be off chemotherapy, a little part of me is scared. I almost wish to keep on chemo so I know no cancer cells will gather into tumors. I feel like we are floating free and worry about unseen cells floating free in Millie. I am so eager for the next scans in 3 months - so eager for the news that no cancer cells flourished in these months without chemo. This will be the greatest Christmas present imaginable. And, although I worry, I know this will be true.

This photo, along with many other beautiful shots of Millie, was taken by our good friend Stephan last weekend in Petaluma.

Meet Butterscotch

Doesn't every chemo warrior deserve a kitten? Meet the newest member of our family- currently being called "Maxwell Butterscotch". A friend of Brian's cat had kittens; who were we to refuse?

The jury is still out on Elmo's (our 17 year old cat) acceptance of this new mewing little life in our house.

I'd write more, but Griffin is next to me reading this and said "Mom, don't give away too much".

NED (No Evidence of Disease)

A quick update to let you know that the scans taken today came back as negative! She had a CT Scan of her neck and chest (the likely place for a metastasis) and a full body bone scan (including her brain).

I love this picture from the computer in the nuclear medicine room- can you see the difference in the fibula on the right?

In three months we'll have another set- and we hope for no medical intervention in the mean time. Next steps- school next week, and Disneyland in 3 weeks!

"Off Treatment"

A good friend of ours, who shall remain nameless, recently injured himself rather dramatically while sabering a champagne bottle at a bachelor party weekend which Brian attended. This gave me pause to think about the danger of popping corks too enthusiastically.

However, we are celebrating Millie, and we have reached a milestone. Fourteen cycles of chemo have been completed. Millie is feeling strong, healthy, and ready to start school.

Millie left the hospital on Friday, the 6th of August, perky and ready to pick up her brother for a celebratory lunch at...you guessed it, Hiro's Japanese Restaurant. The two sat close together, giggling and playing all through lunch as I ordered a glass of wine and contemplated our journey. So much is in front of us, filled with opportunity and hope.

When we returned home we found the room had been completely filled with balloons by our dear friend Tricia- Millie and Griffin were shouting with surprise and joy.

By Tuesday we were back at Oakland in the Oncology Clinic for a transfusion. Millie was content to stay in the clinic all day watching movies, knowing that this should be the very last time she needs blood. The following Sunday she had her last injection of GCSF (the daily shot she gets in-between chemo visits).

Her mood has remained upbeat, and her brother and she have become inseparable. Her counts have dipped a couple of times as her body struggles to make blood on its own- but she has shown no fever or lethargy that would warrant another trip to the hospital.

We are considered "off treatment" now. We'll have a meeting with the oncology team next week about what this all means, but as we understand we will have scans every 3 months for the next year, moving to every 6 months until she is showing as no recurrence for 2 years after treatment. (One of the complexities of Ewings Sarcoma is the pesky frequency of relapse in the first 2 years.)

Today we spent the day at Kaiser in Santa Rosa having scans done - I will post about that as soon as I hear about the results.

Cancer is still a part of our every day existence, but we remain strong and confident as we watch Millie thrive. We are grateful for the continued love, support, and reminders from our friends, community (virtual and local), and family as we enter the next stage.

Hanging the final bag

It is 6:30 on Thursday, and our nurse Paulette (who is always chuckling to herself as she goes about her duties- I never quite catch what she is saying, but can't help but smile along) is hanging Millie's final dosage of Etoposide. We're on day 5 of our stay, each day punctuated by the 2 hours of chemo doses: Ifosphomide for the first hour, followed by Etoposide.

Millie is snuggled in her bed, as the air conditioning is blowing in here- and is sleepy from the benedryl given to her to combat nausea.

We've had a very good visit, and have stayed away from the decadron (antinausea steroid that causes "moodiness"). Each day we've had Physical Therapy here working on Millie's nerve and muscle weakness in her leg. The therapy uses a microcurrent stimulator to "wake up" the Peroneal Nerve path and try to reconnect the brain to the muscle area that has gone dormant after her surgery. Millie tried really hard to lift her foot up while the electricity was pulsing in two areas on her shin and ankle, and by the third day I could really see the foot move slightly.

The physical therapists are specially trained to work with kids- and have brought balls, bubbles, and singsong voices that soothe Millie and keep her interested. They have confirmed that the muscle is activating- so the nerve is doing its job- but the muscle and muscle memory is just so sleepy and weak, it may take many more months for her to regain proper movement.

For now, her foot rolls forward and hangs down on its own, so when she tries to put a shoe on the toes roll under and cannot be straightened. It's sandals for her this fall!

Today we made a big "thank you" sign for the nurses on the floor and hung it in the breakroom with a gift of some magazine subscriptions that will be delivered through the year to "Millie's Heroes" at Kaiser Foundation Hospital.

Her chemo is nearly done, and she is now awake and demanding my computer. She just said "I really want to get on your computer because I found an art game I really like to do. Besides, art is good for you". How can I argue?

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!

Nine Down

We were in the hospital last week for our short stay chemo (nine cycles down!). The three days felt like nine.

Millie could not be cheered up in the hospital- she refused to talk, to be examined, to participate in any way other than passively. I was able to briefly engage her with games of catch, or walks around the floor, but soon the darkness in her mood would set back and she would withdraw again. I have an image that stays in my mind of her little bare head on the hospital pillow and large tears bubbling around her eyes as she wailed that there "is nothing to do in the hospital except lie in bed".

She's watched countless movies over and over, has exhausted all the toys in the playroom (which seem to have been procured from a pre-school), and has filled hundreds of pages of drawings. There is no wi-fi in the hospital, so her attempts at online movie viewing, Webkinz, and online games are just frustrating for her with our cell-phone modem connection.

The doctor suggested a short run of anti-depressants. I suggested (at length and to several case workers and doctors) that we try to make the hospital less depressing! I have loads of ideas. From food to social opportunities to room and playroom setup. This is the only Kaiser hospital for hundreds of miles that treats pediatric cancer- but yet the pediatric floor is set up more for quick stays- tonsillitis, surgeries, broken bones, that sort of thing. There is no real infrastructure for kids who are there a lot. The food never changes, there are no special events, special visitors, internet, etc. We are most often housed with those quick stay folks who have no idea about chemotherapy.

But I digress! Sorry!

Millie is home now and doing pretty well. Her mood perked up a lot just seeing her daddy and brother. She is also swimming regularly at our friends' pool across the street. You wouldn't believe how happy she is in the water. A joy to behold! She giggles and dives and swims across the pool over and over. With her swim cap and goggles, she looks just like any other kid. The swimming is really helping her leg as well- she has built the muscles back around her knee and puts full weight on the leg. She still has dropfoot, but is managing well.

Friday Update

Just a quick update to let you know that we had 2 medical interference days this week. Thursday I was unable to draw blood through Millie's broviac tubes-so we had to haul down to the Oakland clinic for a special drug to clear the lines. On our drive home I got the call that Millie's hemoglobin was hovering around 7 and she had to have a blood transfusion in Santa Rosa on Friday.

Blood transfusions are an all-day affair. You'd think they could call the blood bank, have a pint of A positive delivered, and the infusion done within a couple of hours.

In reality, Millie's blood sample must be "type and cross"'d each time she needs a transfusion. I have no idea what would change every time- as she is always A+, but I am not a medical professional. This checking takes at least an hour, and then the order goes in for the blood which takes another 2 hours. Then the transfusion goes through at about 3.5 hours. Of course, before the transfusion she is given benedryl and tylenol to help against a reaction to the blood. This takes another 30 minutes.

We had an excellent nurse in Santa Rosa who fussed over us in all our grumpiness. Her name is Debbie and she is another shining light we've found on our journey. One more little light we found yesterday was that directly outside the treatment room, where we spent seven hours, hung a pastel work by Millie's Oma- Andrea Way! I call instances like this "wildflowers of serendipity" - little surprises that remind you you are on the right path.

Thursday and Friday this week we spent a lot of time on the road and in medical offices- at a time when Millie was severely neutropenic. We were both pretty fussy about the whole thing, and look forward to a better weekend.

I thought I'd post a picture of Griffin this time. Here he is with a model of a California Mission that he made with Oma over the last month.

Mother's Day

At 6:00am on Mother's Day I sleepily asked our stellar nightnurse, Olga, "Can you hepblock her now?". Millie had finished chemo and the follow up rescue drugs by midnight, and in theory should be able to be unhooked from the IV and ready to go home. Cycle 8 was complete after 5 nights of ifosfamade and etoposide in a shared room during a busy week in the pediward. Olga obliged and Millie was able to wake up naturally and untethered.

The 6 days were tough- the physical therapy team visited Millie each day and tried to get her to exercise her leg and foot with limited success. Millie was very sensitive and reluctant to try on the braces they offered. I actually haven't seen her cry that much throughout her entire treatment. By Sunday we had agreed to put a half cast back on later in the week to alleviate her intense fear of the weakness and sensitivity in her leg.

After she had been unhooked from the IV, we found out Millie's hemoglobin was low at 8. Luckily, we avoided a transfusion and were able to be packed up and ready to go when Brian's mom (Oma) and Griffin arrived to drive us home.

As usual after such a stay, Millie and I basically collapsed at home, and I dozed while cuddled with her in front of a movie. The evening was wonderful, with Oma and Opa coming back with a mess of fried chicken and a mother's day dinner that couldn't be beat. I slept, as if comatose, in my own bed.

The option of putting a half cast back on her leg gave Millie some kind of courage, as by Monday she was attempting to walk a few steps without crutches.

This is a truly amazing little girl we are dealing with. By Wednesday she has abandoned the crutches all together and is walking up and down stairs and throughout the house! She walks tentitively, and with a dropfoot gait, but is walking!

Her Granny and Grandad took her today to a park where she actually climbed up the play equipment and worked hard and exercising her foot.

We're all so proud of her.

Casting Off

Millie's cast was taken off last Tuesday. This is another case where we looked forward to the milestone without realizing the difficulties involved. Without the support of the cast, Millie is no longer able to get around easily. She must use her crutches constantly, and is unable to walk. The muscles in her leg have atrophied (and those that had connected to her now non-existent upper fibula have to recover from being surgically reattached to her tibia)- and the important peroneal nerve that ran along the tumor site will take months to repair itself after the bruising from surgery. Because of this she has a condition called dropfoot. The dropfoot combined with the weak leg muscles makes it very difficult for her to take a step.

But, as she is Millie, she is trying. Every day she tries to put more weight on her foot, to stand on both legs, and to attempt stepping while holding on to our hands. Each step goes like this: She gingerly places her right foot flat on the floor in front of her while holding on tightly to one of us. Then she hops quickly with her left foot to meet up with the right. The force of the hop and added weight on her weak right leg causes the right knee to collapse down and inward until the other foot lands and she can straighten herself up.

She tries, though! She is trying so hard to strengthen her muscles. We'll see a physical therapist and a neurologist in the hospital this week (I guess I'll be meeting that same neurologist again who fought me about the feeding tube). We'll get some good exercises to do- and perhaps some kind of foot brace she can wear so that she can get around better.

We will be in the hospital 6 days this week- cycle 8 of chemo. I heard from the nurse that the pediatric ward is packed- so we may have difficulty getting a bed- and surely will be in a 3-family room. I am sure everyone there is just like us- worn out, impatient, and just wanting our old lives back.

Miles For Millie

Sunday morning came early to the Way household. On the stairs, near the floor register, I had laid out 2 "Miles for Millie" lavender shirts, 2 pants (one with one leg cut short), 4 socks, and 2 pairs of underwear: 1 Clone Wars, and 1 Pink Fairies. These BeatSarcoma Run team uniforms waited patiently while the sky outside lightened and the coffee machine grinded the beans. We were to leave by 6:30.

The family hesitated to rise, my vocal enthusiasm for the coming day vehemently opposed. Brian did rise, donned his own lavender "Miles for Millie" shirt and helped me to get us on the road. It took wrapping the children in blankets and pillows for the ride to San Francisco, but we were on our way.

We arrived in Golden Gate Park and parked in the new museum garage (so convenient when you've got a girl in a wheelchair!). We were there in plenty of time to pick up our bibs and BeatSarcoma running shirts, and to meet the many other Miles for Millie runners.

Our team was over 40 strong- kids and adults wearing the shirts that our team captain Stephanie had arranged. Many of us walked or ran the 1K (including Griffin and his friends Dylan and Jarod), and a few of us ran the 5K and 10K. (I am grateful to Sandy, who in February convinced me to shake off my catatonic couchbound state and get back on the road with her to train for this race. We crossed the 10K finish line together!)

The mood matched the amazing sunny weather in San Francisco- the love was all around as this group started off on the fun run. The BeatSarcoma runners were about 100 in total, all running for research funds- and had raised over $18,000!


The race organizers spoke about Sarcoma, and how this is a "forgotten" cancer- very underfunded in terms of research dollars, but yet a cancer that mostly hits children. The lead specialist at UCSF for Ewings Sarcoma (what Millie has) also spoke about Sarcoma and research. It did hit home to see this small but dedicated group organizing this run- vs. the Lymphoma/Leukemia and Breast Cancer runs and events.
Out on the course, it was wonderful for me, a veteran of many races, to see our group on the path with the team shirts that support Millie. I felt such a bond, such support, and love all around every time I saw another of our shirts.

We even won a medal for "best team!". Millie is so proud- she was shy the day of the race, but today has kept the medal with her all day.

Lucky Number Seven

We're back on the 10th floor in a shared room as Millie goes through cycle 7. The chemo started very late last night, after midnight, which made for a long night of lots of beeping machines. If I was not hopping up to call the nurse for the beeping, then Millie was hurling beanie babies at me when she had to use the commode.

Millie is receiving Vidicristine, Cyclophosphamide, and the 48-hour drip of Doxorubicin. Doxorubicin is dark red, hanging in a covered bag on the IV pole, and exudes a toxic chemo smell through her pores and her urine. Eww!

She is ever the trooper- asking me every five minutes "How many more minutes until the sushi place opens for lunch?". It is raining and I have no umbrella- but you will find me trudging the half-mile to the sushi restaurant soon.

Millie is feeling well, has not gotten sick so far from the chemo, and has already filled many sheets of paper with paintings and drawings.

And the Difference is School

Millie eagerly waited by the door this morning after pinning a crochet flower to her sweater and donning one of Aunt Pat's spring cloche hats. After four months, she was going back to school- to her wonderful teacher, classmates, and school friends who have missed her so. Please check out the wonderful quilt they put together and the presentation video they made for Millie: Click Here
It was viewing this video that made her so eager to get back to her classmates.

After school she was chatty and carefree- laughing and talking (and EATING) during dinner, and being just overall pleasant and wonderful to behold. Since she doesn't start chemo for another week, there is no reason why she can't attend school all week and even Monday before our next hospital stay.

We are so very happy for this break and return to relative normalcy!

Here is a quick video of her playing catch with Brian last night- so full of cheer!

Monterey

We have been waiting for this week for so long. The first part of April has meant a break from chemo and enough time after surgery where Millie could get around comfortably.

We were treated by my wonderful colleagues in the Northern California chapter of Site (The Society of Incentive and Travel Executies) with a weekend in Monterey to celebrate this milestone, and stayed at the luxurious Monterey Plaza Hotel and Spa for 3 nights in a room right over the water. Each morning and evening we'd watch the sea otters floating and playing in the water below our windows. We were also treated to a private behind-the-scenes tour of the Monterey Bay Aquarium with host Scott. Millie asked a lot of questions and enjoyed the jellyfish and large sharks most of all.

The weather was beautiful, and we even ran into my sister-in-law Andrea's parents at a restaurant in Pacific Grove! Such serendipity.

Attached are some video highlights of our weekend.

We have one more week without chemo, and we're hoping Millie can go back to school. She misses her teacher and classmates very much.

NEWSFLASH!!

Celebration is in order! While Millie was getting her checkup with her mama in Oakland, our oncologist Dr. Sharma called home to report that they had analyzed the specimen (ie, the tissue and bone removed during surgery last week) and had determined that THERE IS NO MORE TUMOR!!! Now, I went on to discuss the regimen, and if there'd be any change as a result of that discovery (always hopeful to lessen the impact of chemotherapy) and Dr. Sharma replied no, that as a result of 30+ years of data it would be in our best interest to stick with the eight more treatments we have scheduled to prevent relapse. Okay... I can accept that - Millie came through with flying colors after the first six, so I have confidence she can do this.

So I called Laura's cellphone to give her the news but she'd already heard from Dr. Phil, the surgeon, who again confirmed the pathologist's report: NO LIVING CANCER CELLS REMAIN in the tissue removed. Relief is an understatement... we have reached a new milestone... and SUCCESS. Dr. Phil calls her a "superstar", and that "this is the best case scenario we wished for."

Just wanted to share that with you kind people and I'm right now raising a glass to spring break, and hoping everyone can spend as much time with their families as possible - we'll be doing the same.

Mama, Do I Still Have Cancer?

Millie asked me this last night as I read her a book called Kathy's Hats ( a picture book about a girl who learned to love her hats as she underwent chemo). It gave me pause, as I realized that she may very well no longer have cancer.

I responded "well, honey, you are still being treated for cancer, but you no longer have a cancerous tumor in your leg!"

We looked at her temporary cast, now decorated with marker-drawn flowers and hearts, and thought about what this all means.

It was my first time since the surgery to really think about where we are in this drama of ours. We had considered the surgery to be a milestone, and the farthest distance I could mentally and emotionally focus upon when caught in the turbulance of the diagnosis and early stages of treatment. The surgery has always been a date to reach, a roadside marker to pass as we enjoyed the break from chemotherapy with daily family fun.

The reality of the pain and inconvenience of surgery never registered in my mind. The poor girl has spent the last four days in terrible pain, and has asked us often for medication (this is from a girl who usually refuses any meds). The incision area and the top of her foot have been consistantly aching. She has been grumpy and irritated about her situation.

Through it all, though, she is still a trooper. Her sheets and sheets of artwork always display happy faces, rainbows, trees, hearts, and "I love you"s. She clumpfs around on her crutches through the house, and still finds a way to capture our poor, old, patient cat Elmo.

Today her pain is better and she went on an outing with Granny and Grandad for lunch at Hiro's (sushi and chicken katsu!).

Tomorrow we have a check-up with our surgeon, who may put a hard cast on her. We'll post pix!

Surgery

Okay folks, this is the milestone. Not only is it the halfway point in our regimen, it's where we have the tumor removed, hopefully never to return. Mama, Millie and godmother Annette arrived at the hospital predawn today to prep for surgery. Millie refused the oral medication, the name of which escapes me but I call it "roofies" because it really threw her for a loop when she was prepped for the broviac surgery, mainly because it tastes bad. So she wasn't pleasantly carefree as they wheeled the gurney away and both she and mama shed some tears at their separation. Later it was revealed to us by her anaesthesiologist that he and Millie had a nice conversation about hibernation since she had her ever-faithful stuffed bear with her (as always), and soon she too was hibernating. His and the surgeon Dr. Phil's bedside manner seems to instill confidence in their patients and their nervous parents.

I arrived around 11am after stopping at Toys R Us - they don't open until 10! - for Millie's request of a Barbie Vacation House (we have to spoil her at times like this) and she wasn't quite done yet. When I arrived I got the amusing story from Laura and Annette who were in the main lobby as the assistant surgeon literally ran by - mid-operation! - to get something he "forgot". Instant panic! Turns out he was merely getting a camera to document the tumor. Then, not long after, Dr. Phil strolled into the lobby with a grin on his face - he was VERY satisfied with the surgery. He said there were zero complications, very little loss of blood, and he removed a 10cm section of her upper fibula from which the tumor had grown. Much to my disbelief there will be neither any grafting of bone to replace it nor will it grow back on its own - it's completely superfluous! It's the go-to bone for plastic surgeons needing a graft donor! You couldn't pick a better bone to get a tumor in. Wow. Who knew? The muscle that was attached to that section was reattached to the tibia and she will have no loss of mobility when she heals. Again... wow.

We met her as she awoke in the recovery room and she was tired, thirsty and in a little pain which was administered to with a morphine drip. She seemed fine once the grogginess wore off and best of all, HUNGRY! With the combination of the appetite stimulant we put her back on and no breakfast today, she demanded... you guessed it: SUSHI! So dad followed the nurses as they wheeled Millie back up to her familiar 10th floor while the ladies went out yet again to the Piedmont Avenue Japanese restaurant where they got us all lunch. Millie had two maguro sashimi appetizers, five slabs of raw tuna each, as well as three more slabs from one of our dishes, a little rice, and we set up her Barbie house on the table across her bed.

When Annette and I finally had to leave Millie seemed okay, not in much pain, but very disgruntled by the full leg cast which itches and doesn't allow her to bend her knee. Two weeks of this "soft" cast, then up to four weeks of a traditional hard cast (which allows for more abuse of the leg) and she'll be healed. Last I heard from Laura, Millie's taking out her annoyance on her mama, but that's a sure sign that she's fine. And the surgeon revised their release schedule from potentially Sunday or Monday (she has to learn to use crutches) to a possible Saturday (tomorrow) homecoming!

Thanks to everyone for the well wishes. We've passed our milestone, and Millie's still a champion.

Round 6 - the Battle of the Tube

Somehow we managed to get daily doses of Ifosfamide (mustard gas) and Etoposide (created from the poisonous American Mayapple- possible side effect of drug: Leukemia!) in and around the many scans, Xrays, and doctor consultations that filled our 6 days in the hospital this week.

Millie was admitted feeling quite low from her mucusitis, and was in no mood to do much else than watch movies and peg me with beanie babies when she wanted my attention. As usual in the hospital, eating did not make her short list.

I should pause and note that we can go 5 days in the hospital without receiving one tray of hospital-provided breakfast, lunch or dinner. She simply will not eat hospital food. We pack in some food, and the rest is procured out on Piedmont Avenue or brought in by friends.

Millie's low energy and limited desire for interaction let me to the idea of teaching her some sign language to communicate her basic needs. I found an online ASL (American Sign Language) instructional site and in no time Millie was signing: bathroom, cookie, more, water, milk, hungry, movie, tv, please, thank you, and sushi (ok, we made that sign up after not finding it online).

Due to the worry that some of the chemo drugs may be causing neurological side-effects, Millie had several Xrays taken of her lower abdominal area to look for a possible spinal tumor or other reason behind the lingering nightly incontinence. The neurologist (aka Dr. Rachet) met with me after reviewing the Xrays and reviewing Millie's growth chart on Thursday morning. Although she had good news (there was no additional tumor or any neurological damage), she took it upon herself to advise me in heavy-handed terms that Millie's weight was too low and that she was "slipping off the growth chart". Millie was also was completely full of stool (which is coincidentally how I viewed the neurologist) and needed a drastic flush of "Go Lightly" (a laxative whose name is about as truthful to its purpose as the Clear Skies Initiative).

And so began the feeding tube war.

The tube was inserted into Millie's nose on Friday morning, just before her bone scan. The tube is yellow and marked along the side in inches, like a ruler- so you can easily see how many inches of tubing goes from her stomach, up her throat, through her left nostril, and down behind her ear and down her nightgown to be attached to the feedbag. Yep, a feedbag. A large purple bag to hold quantities of liquid nutrition to be dropped into the tube using the measured timed dosing of the feeding tube pump. Millie's IV pole was something like those flying swing chairs at the carnival- with all the drugs, saline, chemo, and the feeding pump and bag hanging off of it.

I will spare you the details- but suffice to say the GoNotLightlyAtAll worked its magic and, admittedly the liquid nutrition did too and Millie perked up quite a bit by Saturday- when she ate about 8 oz of sashimi and a bunch of graham crackers.

Our oncologist must have been scared by the Neurologist, and she too jumped on the "slipping off the growth chart" bandwagon- demanding that we stay in the hospital through Monday so that Millie can have 3 full liquid nutrition meals each day and so that we may receive feeding tube equipment and training for at-home care. She was requiring that Millie keep the tube in her nose for a week! I called my mother, who still has all the notebooks she kept of my own growth- and low and behold- Millie is nearly exactly the same height and weight that I was at her age. Hurumph!

After long consultations with Brian and much moxy gathering, I put my foot down. (And my knees in a begging stance)- and pleaded, reasoned, negotiated, and promised up-down-left-right that we would get Millie to eat and gain weight without the tube. I flattered. I agreed with her. I understood her concern. But as Brian said "there is no way she is coming home with that tube in her nose". The doctor acquiesced, with the caveat that we must come in one week to have Millie weighed. (Reminds me of when Millie was a newborn and I had to take her every day to be weighed with the threat of the doctors pushing formula if she wouldn't gain weight nursing. Thank goodness then, like now, we were able to triumph our own way)

And let me tell you, since we've gotten home she's eaten very well. Thanks to Daddy's cooking and some doses of Megace (appetite stimulant), she seems to be on the upward swing.

Final note- Millie's Xrays, CT-Scan and Bone Scan came out CLEAN! No evidence of the cancer having spread. We also had our pre-surgery MRI this morning, with Millie once more being anesthetized for the procedure. She did very well (sleepily signing to me "home" upon coming-to). The doctor said he noticed a significant reduction in tumor size from our first MRI back in December. We will write later this week of the official results.

Yahi...!

Laura didn't mention how well Millie has recovered from her rough week, so I just wanted to put our followers at ease: even though the ulcers on her esophagus haven't completely abated, they're getting better and she's eating again. She attended Disney on Ice with her mother and her cousin Sammie Bell (a former Disney princess!) in Oakland on Sunday. She enjoyed the performance, to which she wore her best princess outfit, gobbled cotton candy and cheered along with the crowd, and then they proceeded to take Samantha to the Oakland airport to return to SoCal. Laura called me from the traffic gridlock exiting the arena asking if I knew of any food between them and the airport.

I asked, "On Hegenberger?!?!? You'll be lucky to find a Carrow's style coffeeshop amongst the sleazy motels and fast food." Lo and behold they found a Japanese restaurant, where Millie bonded with her adult cousin while consuming her favorites Chicken Katzu and Maguro Tuna (Ahi) Sashimi (which she calls "yahi").

Still complaining of a sore throat and eating little, she got ready for the nurse's call yesterday. She needed good blood counts to continue with chemo and had last registered extremely low in platelets (the third type of blood cells along with red and white). When Marta called she told us that Millie qualified for sticking with our schedule with 72,000 out of a necessary 75,000 platelet count - they figured she was on her way back up so... all systems GO! I never thought I'd be happy about more chemo, but sticking to the schedule toward surgery, as Laura mentions below, is KEY.

And honestly, aside from painful swallowing she'd been fine - no more vomiting since the first time and no more blood in her stool. They said it could take up to two weeks for her to regenerate her platelets, which would delay everything including our scheduled surgery, but that little machine just bounced back AGAIN! Six-year-olds are amazing.

So today we checked in early for Round 6 (the same regimen in Rounds 2 & 4 were much easier on her than 1, 3 and 5) and headed down to Piedmont Ave. for... more yahi!!! She ate 8 slices of RAW TUNA, a bit of Chicken Katsu and a little rice, then headed once more into the fray, all the while being the silly (continually harassing Daddy is her favorite pastime) and happy little girl we know and love. I remarked to her mother, "We should get her blood checked for mercury poisoning," as ahi has a bad track record these days (see: Jeremy Piven), but Laura chuckled and said, "She's been getting intraveinous mustard gas - how could tuna hurt her?"

She's got a point there.

Milestone- Cycle 6

We've had a difficult week this week, but Millie has made it through and made her counts to boot. Her platelets were low, but improved enough to go ahead with our 6th cycle of chemotherapy- starting today.

We're so glad to stay on schedule for this cycle, as our surgery is now scheduled for March 26 and a delay in the 6th cycle would mean a delay in the surgery.

This week in the hospital we've got plenty scheduled on top of the daily chemo- we've got a bone scan, a CT Scan, and another MRI on Monday. We should learn a lot about how the chemotherapy has attacked the tumor.

After this cycle, we have no more chemo in March and much of April as her body gets strength for, and recovers from, the surgery. This has been a milestone for us- only thinking as far as the surgery date- just focusing on the first 6 cycles of chemo, and getting the tumor removed. And we're nearly there!

Monday Mucus!

Nothing like sitting down to breakfast when your child starts vomiting blood and viscous, stringy, transparent mucus! The amazing thing is she wasn't alarmed. After nearly choking on her muffin because her throat and/or esophagus is so swollen with mucus (apparently due to mucusitis, where the digestive tract excretes massive amounts of mucus to insulate the sensitive tissue from ulcers and stomach acid), she gave up on her meal and motioned for me to follow her to her day-bed upstairs to chill with her cat and her TV. Back to the doctor today (thankfully local again) and she seems well. Attempted a raw carrot (I was surprised at the request but went with it), but her throat didn't quite allow for comfortable swallowing. Still, she's not too bad off - ask her how she feels and she gives you the so-so hand gesture, but with a smile - and she's in decent spirits despite her discomfort.

Laura's previous post goes into detail about what's going on, but I just wanted to chime in and say that after some gutwrenching worry today on our parts her oncologist says she'll be fine and can stay home and should recover soon. This may delay her next (6th!) chemo treatment next week, but that's okay by me. She's still a trooper, so please don't be alarmed. Minor setback is all. I keep thinking of Laura's description of the nurse in Santa Rosa who took a look at Millie's charts, registering the potent cocktail of chemicals she's being bombarded with, then took a look at Millie... shook her head, and remarked something to the effect that she's never seen a child so young do so well with all the shite she's being fed.

Soft foods for now... too bad it's unlikely I'll sell her on the split pea soup I'm making.

Side note: Millie has grown an inch since being diagnosed three months ago and undergoing two+ months of chemo. So apparently her growth isn't being affected. She'll likely be six feet tall as an adult at this rate. And she's clamoring for dinner now - gotta go...

UPDATE: Tuesday morning. We managed to mitigate some of Millie's discomfort pretty well last night with a combination of her "magic mouthwash" - which we use to combat mouth sores, which this basically is except below the esophagus and potentially throughout the digestive tract - and the exotic drug known as... Tums. Yep, one Tums chewed up 3 or 4 times a day seems to help with the irritation. She's in good spirits, perhaps a little fatigued, but that will be remedied by the hemoglobin transfusion she's getting Oakland today. More tedium of the drive both ways, waiting two hours for a blood match, then sitting through a three hour transfusion. But she can watch DVDs while she's in the clinic, visit with her favorite social worker, and then her mom promised her a trip to Ikea for her favorite meatballs since they'll be in the neighborhood. These little things help immensely.

Fever, Mucusitus, and Hopscotch

If you had seen Millie at a park near our house on Saturday afternoon, you'd never know she had just gotten home from 3 days of chemotherapy followed by long return visits to the doctor on Friday and Saturday. By Saturday afternoon she was running with her brother, swinging across the monkey bars, and playing hopscotch.

Cycle Five of Chemotherapy incorporated 3 drugs: Cytotoxin (i.e. mustard gas), Vidicristine, and Doxorubicin (interesting fact- Doxorubicin was discovered in the soil surrounding a 14th century Italian castle)

This was the drug combination that really threw Millie on her first round- and it got her again. The morning after we got home from the hospital, Millie developed a fever of 101.8. The fever dropped in the day, but the fact that it presented necessitated a doctor's visit and preventative flush of antibiotics.

I feel almost glad this happened, as we learned that there is a nurse in Millie's pediatrician's office here in Petaluma who has experience with pediatric oncology and specifically with administering medication through her Broviac line. It turned out to be a great chance for Millie's regular doctor to see her again, and we were thankful not to have to drive to Santa Rosa in a storm.

I am drafting a letter in my head to Kaiser Permenente praising the care we've received for Millie, and our experience this week is a great example. On Friday, we were swept into a clean room immediately upon arrival. The nurses fussed over Millie, giving her untouched books to read and bringing a tv into the examination room for Millie to watch a movie during her IV infusion of liquids and medications. They took care of all the registration and check in by just asking for her card from me once.

On Saturday, the Petaluma office was closed, and we had to get Millie's 2nd antibiotic dose in Santa Rosa. Usually on the weekends this must be done in the ER, but the Santa Rosa office opened the chemotherapy infusion clinic for Millie and let her go there. This clinic never handles kids, but the nurse who came in for Millie had experience at Childrens Hospital. Once again, I never had to wait, fill out paperwork, or have any hassle. The nurse, Diana, swept us in and put Millie into a waiting chair with warm blankets and pillows. Diana knew she was going to help Millie that morning, and had brought in a stuffed animal, pens, and bubbles as a little gift.

We love the care and ease of being in the Kaiser system- but sure wish the hospital had private rooms or at least an oncology ward.

Monday update - Millie evidently has "mucusitus", which causes ulcers in her digestive tract. She was throwing up blood this morning, which is shocking and scary to witness. This condition will not improve until her counts go up again, a week from now. Poor thing!

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!