Round 1

I'm home now, to be with Griffin. He's perfectly happy with his grandparents, but he usually has his sister around to keep him company. I'm going to have the Big Talk with him tomorrow. Although he knows a little bit, he'd like "to know more about it... when you're ready", he told me tonight. So we stayed up late, just the Bachelor Boys, snuggling on the day bed watching Star Wars: The Clone Wars episodes and tormenting the cat. He's on Winter Break so he can sleep in tomorrow - I haven't seen him in two days, so pardon my indulgence.

Millie has yet again proven herself the World's Best Patient. But... Monday was hell. She had surgery to place her Broviac Line* and it took entirely too long for us to endure, and they forgot to call us to be there when she woke up. Jerks! Luckily the social worker found us and got us up there within minutes... but all she could do was cry and say she wanted to go home, while sitting in surgery recovery room with a bunch of other patients, machinery and bustling post-op nurses. She even refused her popsicle this time. The only bit of levity we had was when they gave her an oral medicine to "relax" her pre-anaesthesia, and she got completely loopy as we put on her hospital gown and slippers and with a mischievous grin on her face tried to "go somewhere", like a drunken friend saying "Nonsense, let's get another drink! Where's the next bar?!" Shades of Millie at 21. ;)

When we finally got our room we were sandwiched between two families (separated only by curtains), one of a very loud and fearful older girl in some sort of vague pain and one of a 4-year-old finishing up brain tumor treatment (and doing well! hopeful, indeed). We kept her distracted and got her to eat, but she threw most of it up, and this was before the chemo. Finally they administered two kinds of chemo* and an anti-nausea drug at 10pm, and she fell into enough of a stupor to allow us to read to her until she fell asleep, but not before a pretty major breakdown and more whimpers of "I want to go home..."

Laura gave me the spare key to her brother's house in the Oakland hills to go "get some sleep" since they were still in Tahoe (thanks guys!) and I managed to drop off around 2am, to wake up to an 8am text from Laura: "Bring chapstick... and COFFEE!!!" I bolted back up to Kaiser still groggy, ditched the car and scoured Piedmont Ave. for decent java, finally having to settle on Peet's chain swill (beats hospital coffee, don't get me wrong). The girls were happy to see me. Neither had slept or eaten much but somehow daddy could elicit a smile here and there. In fact I couldn't believe how positive they both seemed - real f'n troupers, I tell ya. Millie had been gaining an ever-increasing appetite as well as watching 900 million DVDs and filling an entire coloring book, finally passing out into blissful nappy slumber for the better part of three hours while Laura and I got instruction in home maintenance of the Broviac Line* including line flushing, cap changing, dressing changing, and blood sample drawing. Oh, and a daily subcutaneous injection of CGSF* to keep her immunities up. Not a job for the squeamish - makes us wish for more hospital time.

But that's not true. We can't wait to be home. We can step up to the plate and do all that's required of us. Anyone who's ever picked infant vomit out of their hair or toddler diarrhea out of the carpet can do this, right... RIGHT?

So as I went to the visitor's lounge to get Millie a milk, who should I see but our dear friend and neighbor Tricia, who had come all the way from Petaluma with gifts and company for Millie (and Laura). How very lucky we are to have such great friends! I escorted her back and the girls chatted while I ran out to a nearby Japanese restaurant, hoping against hope that they had Millie's favorite meal: Chicken Katsu and white rice with soy sauce. They did! And some nice-looking nigiri for Laura. They were so nice, setting me up with a hot towel, a beer, some green tea and a California roll while I waited. I promised a longer return visit. Millie was stoked to see me return with what she calls her "Hiro's Special". The ladies seemed content as I headed out in the rain to head home and pick up Griffin from his grandparents. We hope to spend some quality time together Wednesday.

I pick up the girls Thursday, New Year's Eve morning. With any luck we'll go home, reunite, have a nice comfort meal and all crash in our own beds hours before midnight. There's even a tiny chance we'll venture out for the annual New Year's Day OysterFest at Heart's Desire Beach. Or maybe we'll all just stay in and play Candyland and Battleship all weekend. So when you're all out toasting with the bubbly, please think of us. We wish we could be there... but not this year.

* Laura may want to post the gory details of these devices and procedures, but I don't. Sleep well.

An Emotional Rollercoaster

Now I really understand what that phrase means. I've never been a very openly emotional person. Not stoic, by any means - I can be quite empathetic and even sentimental when the situation calls for it. But since having children I've developed more fears than I ever thought possible - my own mortality never frightened me, but my children's mortality has had me in a perpetual state of nervousness for the past eight years. I may even be a bit overprotective, but hey, that's better than the opposite, right?

But now that the worst case scenario has struck, even I have succumbed to an overwhelming anxiety, a debilitating depression, all-out despair, borderline psychosis. I am not myself - my anxiety has taken me over. This is the first time I have ever felt the need for pharmaceutical assistance, and now I know what other people go through under these conditions. I've always been pretty good at self-medicating by more traditional methods when under duress and in need of calm, cool, rational thought, but those methods don't work when I can't eat, I can't sleep, I can't keep from breaking down crying at the drop of a hat. Luckily the Ativan has seemed to help me keep an even keel. Welcome to THAT world, BeeDub, a world you never thought you'd experience.

Laura says I've been strong and am eager for treatment, which is true to some extent. But inside I'm more terrified than I have ever been in my life. She looks FINE! She's rarely in pain, she's happy-go-lucky and enjoying Christmas vacation and to look at her you'd never predict her precarious situation. Is this all really REAL?!?!?

Of course it is - denial won't help - I know what we need to do... We need to start the CURE, so why waste any time getting started? The biggest fear has been the fear of the unknown. We know a lot, now, about what to expect, but we don't know how Millie will respond, and what time at home and in hospital will be like on a daily basis. This will change and get better as time goes on.

I worry less about outcome - I have faith in modern medicine and the doctors, experts and specialists we have met. I know we will beat this. It would just be nice to say, "The tumor's totally localized! It's hasn't metastasized! Let's just do surgery and be done with it! We can monitor her for future tumors!" But that's not reality - reality is that technique usually results in relapses and spreading of the cancer to the point of inoperability.

I worry more about a treatment that is nearly as deadly as the condition itself. They say they know how to adjust it for a six-year-old's height and weight (the more common age of these sarcoma patients is around 10 or 11). But they say they've had children as young as infants not only survive but live a cancer-free life - the numbers are heavily in our favor. And I worry about the demoralizing aspect of all that hospital time. But perhaps I'm projecting - I HATE being in hospital (and have avoided it pretty well, knock on wood), but Millie will be surrounded with social workers to keep her entertained, two of whom she's already met and seems to like. There will also be other pediatric oncology patients and apparently a playroom where they can mingle. She's a very social little girl, and DVDs, games and books will make the time pass quickly. Her school teacher is already planning a light home study program and communication from her classmates in the form of cards, gifts and perhaps even teleconferencing!

She's also a very strong little girl, with her mother's eternal optimism, inner strength and sunny demeanor. And right around turning six she has shown a stubbornness, determination, and dare I say tenacity, that I think she can channel into getting through this ordeal with her head held high. And she has such a wealth of support from friends and family that it's almost overwhelming. The positive energy coming from you all is palpable, and is probably what has kept Laura and I as together as we've been. Tomorrow our journey begins, so keep that energy coming. Understand of course that while we dearly appreciate your phone calls and emails, please realize that we may not be able to reply in a timely manner. As treatment becomes more "routine" (as much as that can ever be the case) we will be able to schedule visits and that sort of thing. Until then, please know that each and every one of you and your support means so much to us... THAT in itself brings tears to my eyes.

Christmas

I was mildly successful in subverting the overwhelming feeling of heartbreak and despair that has plagued me this week and joined our family for Christmas eve and Christmas Day celebrations at our parents' houses. Wine and rounds of Tripoley helped. The kids had a great time, and are enjoying their gifts and the plates of cookies that are left over. We are so lucky to have our family so close- and grateful for the gifts we received in a time when we really couldn't do much shopping for others.



Tomorrow we go in for surgery to install Millie's center line, and her first chemotherapy starts that evening. The surgery is not until 2:30, and she can't eat all day prior. :(

The logistics feel overwhelming at this point- packing bags for us all and for Griffin to go to his grandparents. We still are not sure how the overnights will work at the hospital, and assume Brian and I will be trading off and driving back and forth to Oakland many times.

I will try to post some updates from Brian soon, as he is able to stay optimistic and eager to get Millie into treatment. He has strength and a sense of purpose about getting going, getting her cured.

I will try to post on Tuesday morning and let you all know how she did with her first round.

The Briefing

Yesterday was a perfect example of a reality we must come to accept. "Things always take longer than expected."

We expected to be home by about 2:30 after our morning EKG and treatment briefing with our pediactric oncologist in Oakland - yet found ourself in rush hour, holiday traffic all the way to Petaluma. We will have to take this lesson to heart as we, in our control-freak way, try to schedule our coming months with a big shiny finish line planted firmly on August 15. However, our finish line is tethered to balloons, and may float closer, farther away, or completely out of reach. We cannot control it.

We learned the treatment schedule- which will be 6 cycles of alternating 3-day VDC (Vincristine-Doxorubicin-Cyclophosphamide)treatments with 6-day IE (Ifosfamide-Etoposide)treatments. After 6 cycles, (about 3 months), the tumor should be shrunk considerably (and die, we hope) to give significant margins to the surgeon who will remove it. After the surgery, she gets a 2 week break from the chemo, and then will be back on for 8 more cycles.

Along with the chemo drugs, she will be givin MESNA, which I think is an anti-nausea drug. She also will have to get nightly injections of G-CSF that promotes white blood cells. We are not thrilled about giving her a shot every day! Each weekend she'll have to take a round of pills 2x each day (Fri-Sat-Sun) to combat a type of pneumonia that preys on the immune compromized.

In other news-she has a 30% chance of having a normal onset puberty and normal fertility. She has a 30% chance of late-onset puberty but with normal fertility and has a 30% chance of having hormone and fertility problems. Also, the chemotherapy treatments may cause other cancers later in life. Although this has found to be extremely rare in pediactric patients.

She is scheduled for surgery to install the broviac line on Monday at 2:30pm- it will be a long day since she can't eat anything after midnight. The first chemotherapy will start that evening. She'll be 3 nights in the hospital for this first time.

She is doing well today, and her pain is managed by the Codeine. We did get a perscription for morpine as well (zowee!)- and will administer only if she is in the kind of pain we saw her in a few days ago.

Oh- if any of you have a cute shaped beanie or fitted cap knitting pattern in a size for a 5 year old, please send along. I went to the Knitterly in Petaluma looking for some patterns for hip girls caps- but got a little overwhelmed, and was too emotional to talk to a sales person about what I was looking for. I'd like to find something that goes down to the nape of her neck in back - like a 20's style cloche hat.

We're off to an afternoon of holiday cheer at my parents- both my and Brian's families will be there together this Christmas Eve. We are so grateful for our families, and their close proximity!

May your dreams be of sugar plum fairies bringing sweets, joy, and hope.

Codeine Convelescence

The codeine lasts almost exactly 4 hours- so the remaining 2 hours until the next dose are pretty agonizing. Luckily this afternoon she slept for those 2 hours prior to dinner in our new convelescent area we made upstairs. We pulled out the sofabed in front of the tv and made it into a lounge area for her (and Griffin). This way she can keep her leg up, and drift off to sleep comfortably if she feels like it.

I took her downtown today to run two errands- she did pretty well (timed it just after the noon codeine dose). She can sort of hobble, if needed, only if the medicine is working (although I carry her if the distance is more than a few steps). We borrowed a jog stroller from our friend Stephanie this evening- hoping this will help us get her around.

I just received some books that were researched by our friend Maggie- one of them is a kids book about what happens when a sibling gets seriously ill. Griffin read it, but didn't want to discuss it (yet). I want to keep him involved and aware of everything that is happening- to whatever limit he sets. I asked him if he wanted to come see the hospital and the nurses and doctor that will be taking care of Millie when we go tomorrow, but he prefers hanging out with his Oma and Opa and his friend Dylan (surprise surprise).

Tomorrow we go for the briefing with the doctor in preparation for the Broviac line to be surgically inserted and chemotherapy starting next week. If Millie's pain becomes untreatable with Codeine or Morphine, we may have to start chemotherapy early- but we hold out hope for a happy, pain free Christmas for her.

She is now in the tub (just had her after-dinner dose), playing happily. I hear her singing from here as she plays with her mermaid barbies.

Griffin and Brian are playing a duet on the piano.

Thank God for moments of peace. And for our dear friends and relatives who send such light our way.

Tough Day

Millie's leg is worse today- she could really not walk or stand, and has been whimpering in pain all day. Last night she woke me up at about 2am as she wanted to sleep with me in the upstairs bed. I gave her some childrens ibuprofin in the night, and tried to sleep with her. She is not the easiest bedmate, as she tends to migrate over to my pillow and flop limbs over me. I remember when she was an infant, and we were "nesting" in that same bed upstairs for her first 8 weeks- I used to experiment with her, placing her about 2-3 feet from me in the bed, and see how long it would take this little swaddling to inch over to me. In about 20 minutes, she was nestled against me- without ever appearing to move.

In any case it was a rather sleepless night for all (Brian woke up to find me gone and the childrens' door wide open, Millie's bed empty, and was quite worried).

I talked to the nurse in the morning and expressed my concern about the pain, and how I didn't understand how this pain would subside when surgery for treating the tumor was months away. The nurse said that after even the first chemotherapy, the tumor will shrink considerably, as should the pain.

Of course, the first chemotherapy is 9 days away (they moved it to Dec 30) and Millie is in such pain now. Nine days ago she was still running around the playground. What will happen in 9 more days?

(Not that we're eager to start life with a chemotherapy patient- there is so much to do to prepare the house and ourselves- and we've got this little thing called Christmas in the middle. We just hate to think of that tumor growing and growing with no treatment starting for weeks after first diagnosis)

We did get a perscription for Tylenol with Codeine and picked it up this afternoon. It seems to be helping now, as she can walk and isn't crying.

It seems that people in Petaluma are aware of her condition- either through friends, this blog, or maybe seeing me carry her through the rain on Kentucky street today. It is sort of a relief- but also it is hard to talk about in front of the kids- as Griffin and Millie are sort of on a "need to know" basis on the details and severity of her diagnosis. We try to stay upbeat and positive, while acknowledging that our future will be one of many hospital visits to fix her leg.

Today it was very difficult for us to stay upbeat. Brian and I are torn apart seeing her in pain, and we're so overwhelmed by the next 9 months.

On the other hand, we had some supporting calls, visits, and emails from neighbors, old friends, and loved ones that always keep us going.

No Running, No Jumping, No Horseplay (repeat) No Running No Jumping No Horseplay (repeat) No Runn...

We repeat this ad nauseum, but in the thrill of the moment she consistantly forgets.

She is barely walking today, as last night she had a tremendous time playing at our friends' house. She and Griffin, along with friends Dylan and Nicky, were spies and bear hunters- a small band of banshees playing nonstop. I wonder, should we have her in a brace or split to force her to mellow?
She woke up this morning at about 5:30am whimpering. We only have childrens' ibuprofin at home, of which she will only drink a tiny sip. This is one of our big challenges that we'll be facing- getting the girl to take her medicine.

It seems strange to me that we are going to put Millie through all these treatments to "fix her leg"- none of which will directly make her leg pain go away, nor will they do anything to heal her bone. The osteopath said the bone would heal itself after the tumor is removed- but how can cells regenerate when her body's entire process of cell regeneration is beng chemically annihilated?

Around Town

As anyone who has been in the shipwreck of grief or turmoil knows, the innocent phrase of "How are you?" comes as a torpedo to dodge or hit head on.

I tried out, this week, the response of "Oh, I am fine, how are you?". Previously, I didn't want to lie- but telling the truth was way to heavy. It actually worked. I went through an entire eye-doctors appointment as a charade. And the normalcy, the agreed-upon expectations of interaction was appreciated by all sides.

This came on the the tail of me being at the Lancome counter of Nieman Marcus in the city- asking if my mascara came in waterproof. "Why?" the attendant asked me. "Do your eyes tend to water?".

And the answer on the tip of my tongue: "Well, you insenstive troglodyte, my 6-year old daughter was just diagnosed with cancer. So, I guess my eyes tend to frigging water a bit".

But instead, "No, never mind, just ring up the lip gloss".

Around town today, my mother-in-law and I took Millie and her dear friend Caroline to the movies to see Princess and the Frog. They were a true dream- so cute together dressed as princesses to view the movie. Caroline is so close to Millie's heart- and she put together with her mom and sister a very sweet "Millie's Dream Bag" of items to take to the hospital. We are so grateful, so blessed, for the beautiful and compassionate friends we have around us.

Hark! The Herald Angels Sing

Oh, the glory of good news. We heard today that Millie's CT Scan and Bone Scan came back clean. There is no evidence of the tumor having metastasized. This means that her prospects for long term survival, dare we say "cure", are up around 80%.

We have a tough road in front of us, as the treatment remains the same. We are just unbelievably lifted by the confirmation that this has remained localized to her leg.

Today was Millie's last day of school until at least September. I took a picture of her classroom to post up on her wall as she goes through the months of treatment. She'll be with the same class when she returns, as she is in a Montessori classroom where the kids stay with the same teacher for several grades.


We are so grateful today for this good news, and grateful for the wonderful support and love from all of you.

Testing, Testing

I have said a few times that Brian and I sway from heartbreak to logistics to hope and back, often many times in a day. Today we were in full logistics mode as we took Millie for 2 more tests that need to be completed. Like Santa, we have a checklist. We must have 5 tests done before we meet with our pediactric oncologist for or "chemotherapy briefing" next Wednesday. Today we crossed off 2 in one day- both rather intense for a 6 year old girl. The first test was a bone scan, for which Millie was injected with a radioactive substance. This is injected beforehand, then we had a 3 hour break to let the compound fill her body before the geiger-counter portrait is taken. After the first injection, during the break, we scheduled the CT Scan (which also required an IV of some compound that is inexplicable to me).

The nurse was hoping that the same IV that was used for the 1st injection could be reused for the 2nd- so she taped it down and left it in for the next test. Millie had to lie still on the gurney until it was time for the next test- over 40 minutes without moving her arm (as the nurse said it was very precariously positioned). So glad I had the Tinkerbell movie on my iPod!

Unfortunately, the IV wouldn't work for whatever connector the CT Scan required- so Millie had to have a 2nd IV put in to her other arm. Not good news, but she held up. She cried tears of frustration at the process, and the undending preparations that the CT Scan technicians were fuddling about, but when it came time to be perfectly still and endure the scan, she performed perfectly. I donned an Xray apron with handy thyroid cover and held her hands as she went into the machine. A loud, robotic voice would say "BREATHE IN, HOLD YOUR BREATH" then "BREATHE" as they scanned her chest. Pretty weird.

During the break, we took her to lunch and then to Toys R Us for a treat. She picked out a princess purse/jewelry thing (no surprise) and the game "Battleship" for Griffin. She always thinks of her brother. Even when in the pediactric oncology unit at Kaiser days earlier, when given a stuffed animal she asked for something for her brother too.

The second test was a bone scan. This is the geiger counter picture that is made of one's skeleton. This is amazing technology, folks! (Too bad for the radiation and all...) I watched the image like a hawk on the screen and clearly saw the tumor. I hesitantly say that i did not see any other irreglarities, but of course I am not a radiologist- and also did not have the view that they would have of the test.

I believe we'll find out tomorrow about the results. The big one is the CT Scan, as Ewings Sarcoma tends to metastisize first in the lungs.

Other upcoming tests are an EKG, Blood work, and a bone marrow sample (also super important, to tell if malignant cells are in her marrow). The first 2 we'll get done by Wednesday, and the bone marrow will be drawn when she is anesthesized for the placement of her broviac line.

Logistics and writing this blog keep me from succumbing to emotional darkness- as I step outside myself to become somewhat of a voyeur rather than a participant.

Millie was a superstar today. We pray and carry tremendous hope for good news tomorrow. News that this tumor has remained localized.

We are ever grateful and overwhelmed by the messages, calls, and posts of love and caring for our family and for Millie.

How we first made our appointment

I thought I should post about how we got to the pediatrician in the first place. I first heard Millie say that her calf hurt on the Wednesday before Thankgsiving Day. She was wearing her new birthday boots, and so I assumed that the zipper was bothering her. I looked at her leg and saw there was no redness or bruise, so we changed her shoes and went on with our day (and on this day I took the kids on a long walk around Petaluma- about 2 miles all told).

The previous Saturday, Millie and Griffin had gone to their friend Hunter's birthday party at Redwood Empire Gymnastics. Lots of jumping, climbing, running, etc. On Sunday, we had Millie's birthday party here at the house, and rented a jump house. Again, lots of running and jumping.

In retrospect, Brian and I are grateful for the 2 solid days of stress on her bone, as this seems to have gotten her to the place where her leg hurt enough to really say something. If she had not had this activity, perhaps we would have gone weeks further without knowing.

In school the next week, Millie seemed to limp a bit, and run with a little hop- favoring her right leg. On Wednesday, Griffin told us that Millie had not participated at recess (very unusual for her), and Brian and I noticed her calf was swollen and hard to the touch (unlike soft muscle). I immediately called the doctor for an appointment. He wisely directed us to Xray, even though Millie did not appear to be in tremendous pain or immobilized. We are grateful for this quick action by our pediatrician.

The 12 Days of Christmas

We have 12 days until Millie checks in to Kaiser Hospital Oakland for her first stay and round of chemotherapy. For now, we have a happy and, to all who see her, healthy and active kid. I guess what seems so illogical is that we are going to turn this "healthy" kid into a sick one through poisoning her blood with a blend of toxic drugs. It is all so hard to beleive, but we wil do anything and everything to kill this tumor and rid her of cancer.

Tomorrow, December 17, we'll go to Kaiser Hospital in Santa Rosa for a bone scan. She will get a shot of some lightly radioactive material (!!) and will come back 3 hours later for the scan. We are praying that this scan will show no further tumors.

If you have any interesting links or information you'd like to share, please post a comment to these posts so we can all share the knowledge.

The Diagnosis

Today Millie was diagnosed with Ewing's Sarcoma.
Here is what CureSearch.Org says about this cancer: Ewing sarcoma is the second most common tumor of the bone. It most often affects bones of the pelvis, the tibia, fibula, and femur, and can also begin in the soft tissues. This disease most often occurs in adolescents, with nearly half of cases arising between the ages of 10 and 20.

We visited the specialist, "Dr. Phil" who interpreted the MRI and biopsy to us. All findings supported Ewings Sarcoma as the cause. Dr. Phil showed us that the tumor is approximately 30.5 mm in width, and has not touched the tibia or the knee.

He described the typical treatment plan to us, which would start with 3 months of chemotherapy to shrink and stop the tumor, then he'd perform the tumor-removing surgery on Millie's leg. After surgery, there would be another 3 months of chemotherapy. He was very optimistic and compassionate- and even mentioned that Millie would be able to stay in school and would recover from surgery in 6 weeks or so.

He then referred us to, and got us an appointment in, the pediactric oncology group. We ate some quick lunch in the cafeteria and headed over to this other building.

The waiting room in the pediactric oncology area is bright and airy- the artwork is sunshiney and there is a beautiful fishtank and children's tables. I found it difficult to show my heartbreak and tears in the company of two brave kids waiting for their chemotherapy appointments. I realized, looking at Millie playing happily with her full head of wavy hair and energetic laughter, that she would be soon just like these other kids.

I guess that was optimistic of me, as we soon found out that the treatment for Ewings is much more intense than many other cancers, and outpatient or home-treatments are not a possibility.

We soon met one of the pediactric oncologists handling our case- Dr. Anjali Sharma who was kind and compassionate and tried not to overwhelm us.

The hardest news was that all of Millie's chemotherapy will be "inpatient" and administered durin hospital stays that will be 3-5 days in length and alternate every other week. This makes it impossible for her to stay in school.

The danger of Ewings is that it can become resistant to one type of chemotherapy drug, so a combination and intense dosage of 5 drugs are used.

Our next steps are to get a CT Scan, Bone Scan, Blood work to see if there is evidence of spreading of the cancer. Next Wednesday, December 23, (my Mom's birthday), we will meet with Dr. Sharma to discuss our entire chemotherapy treatment plan.

At this point, she'll check in to the hospital for her first round on December 28. At this time, they'll install a "Center Line Broviac" into an artery in her chest to manage an easy "plugin" for administering medicine and chemotherapy, as well as for drawing blood. They will also take a bone marrow sample for further testing to see if the cancer has gotten into her bone marrow.

Everyone is hoping that this cancer is localized- that it has not spread. If so, her chances of surviving this are upwards of 80%. We love stories of Ewings Sarcoma survivors- there are many!

The MRI

Knowing how important the MRI and Biopsy were for us to start on the road to repair, we eagerly awaited the call from the Oakland Radiology group to schedule our appointment. Imagine our surprise when the dates offered were December 16 and "into January".

We honestly didn't think about struggling with beaurocracy on top of everything else. We were grateful for our friend who is an executive at Kaiser,who promised to help us get in sooner.

Luckily, a cancellation in San Francisco got us in on December 10. My parents were kind enough to drive me and Millie to SF early on that Thursday morning so that Brian could get Griffin off to school.

Millie was an absolutely perfect patient- from start to finish. She had to be anesthetized- but went down easily (the anesthesiologist said "this will be easy for her- but you, you need a drink").

The picture shows her waking up after the procedure. She was mostly concerned with the IV in her leg, and once that "tape" was off, she settled back with a popsical and a movie I had downloaded on my ipod. Later that afternoon, at home, she was playing with her brother like normal.

(Although she knows she is not supposed to "run, jump, or roughhouse", she still zooms around with very little complaint or limping.)

The Start of it All

It began with this image, taken on December 3 at Kaiser Petaluma. The image shows how the top of her right fibula (the small bone next to the tibia) has been pretty well decimated by something. The pediatrician, Dr. Hensley, showed us the image on the screen saying "this was not what I was looking for"- and began to explain how a normal bone should look, and how this area of her fibula suggests a lesion.

I stoppped him and choked out ""so, when you say "lesion", you are talking about..."

"..a tumor" he said

He continued to show the splintered areas of the bone, and recounted his conversation with the bone tumor specialist with whom he'd shared the xray prior to coming in to the examination room. He said the specialist was very optimistic and confident about curing Millie.

The next steps were to get Millie an appointment for an MRI and biopsy.