Three Years

We're moving down the path towards "cured" as Millie made it three years in remission in December.  She has regular X-rays of her chest and leg and twice-yearly CT Scans and MRIs, all of which have come back clean.  Her foot-drop is still prevalent, however, with no real hopes for improvement.

We moved to a new house this summer, and the kids moved to new schools. Millie is back at the school where she spent kindergarten.  She dropped back one grade due to her illness, but the fifth graders still remember her- many of their families donated meals to us while she was in treatment.

In the time since I last posted we lost our beloved Aunt Barbara to Pancreatic Cancer.  In these times while we remain so grateful for Millie's health and continued clean scans, we grieve for those whom cancer has taken. 

Here is a picture from the Kinetic Carnival in Willits, where Brian's brother Darren sells his hand-crafted marionettes. The kids love helping in the puppet shows.

Two Years - We've Made it Two Years!

Could I have been holding my breath for 24 months? Can I breathe today, August 5, two years after the hanging of the final bag of chemo? I have been known to say "If we can get to August 2012, we can breathe a bit easier" - as the general knowledge on Ewings Sarcoma states that most relapses and metastasis occur within the first two years after treatment.

It will take until December 2015 for Millie to be declared, in effect, "cured"- and there is always a real risk for leukemia to develop as a side-effect of the chemo drugs she was given.  Millie has scans in about a month, on September 11.  We have no reason to expect them to be anything but clear, but will report here the results.

I have heard from other moms that Millie is opening up to her friends and schoolmates about her experiences with cancer, doctors, and hospitalizations.  I hope that her willingness to talk allows her a way to examine her feelings and understand this medical history in a way that she can make sense of it all.  Perhaps she'll become comfortable enough, and even interested enough, to help other kids who are going through what she has experienced.  I've brought up the idea of visiting the 10th floor of Kaiser Foundation Hospital- where she spent so much time and knew so many amazing nurses- but she isn't quite ready to return. 

We haven't been to our physical therapist in many months- as we were told that the peroneal nerve that was damaged by the tumor-removing surgery had to heal on its own.  The repair process is unbelievably slow, but we are seeing improvement. Millie can now lift her four little toes on her right foot, and is able to lift the foot to a near horizontal plane. The big toe still hangs, making it difficult for her to get into certain shoes. The overall inability to flex her foot still causes her to over-compensate while walking and running.  March of 2013 will mark the three-year mark from the surgery, and we've been told this nerve can take three years to repair.  As I've said before, if all we have to worry about is a dropfoot, we'll take it over cancer any day!

Rounding First

It's hard to believe I've been this remiss about posting. I guess the (glorious) repetition of Millie's medical schedules make for difficulty in coming up with new ways of expressing the same story, the same sentiment. The schedules are glorious as they are generally without drama, without intervention or concern. Each 3 months we wake her in darkness to drive to the MRI under anesthesia- after which, each time, she wakes, grumpily sucks a popsicle, and eventually asks to be taken to Toys R Us for her "reward".

This last MRI, in February, was done in Oakland with Brian to great success. I was relieved not to be there, and all parties seemed to get along better without my fretting. We had been going to SF for these 10 quarters in a row, since December 2009. We all needed a change.

Millie is now starting softball with her team the Petaluma Pistols ("Fast and Fearless"). In her very first game, first time at bat, she hit a grounder and got on base. We all wish her leg was doing better, as her brace is bothering her to no end- but so far the improvement in her peronial nerve is incremental at best. She says her foot feels like it is "on fire" when in her brace. Sigh. I can only hope that this is a sign the nerve is awakening. We may start her in physical therapy again now that I have full medical coverage through my new job at Autodesk (yay!).

I am thrilled with my job, and also by the fact that I felt confident enough in Millie's health and prognosis to take a full time job. I had been freelancing since May of 2010- always aware that I might be back in the hospital at any moment. This confidence, this opportunity, and these suberb health benefits are such a blessing to our family and to me as a working mom. I feel a renewed sense of hope and security overall.

We are literally rounding first and heading towards 2nd base this year. As we look to August we look to our two-year anniversary of being "off treatment". This is an important milestone as our prognosis gets better if Millie makes it to this point with no relapse or metastasis.

November Sun

This morning we once again hauled down to San Francisco Kaiser for an MRI under sedation for Millie. This time Annette accompanied us and made the day much easier. She and Millie snuggled in the back seat as I drove down the 101.

This was our 8th MRI at Kaiser, and it was still tough on us all. Millie struggled, cried, and fought on the gurney as the anesthesiologist and staff attempted to restrain her and hold the mask over her face. Oh, it just doesn't get easier. I could cry to the heavens how unfair it all is- but really, we are blessed. Many more mothers are watching their children undergo much more invasive procedures, and are hanging to hope in the face of terrible adversity. We just had today. (And every 3 months, oh and the physical therapy and brace, and the echo-cardiogram due in Nov, and the foot drop, and the bone scans and the CT scans, and the chest xray due next week). Still we are so very very fortunate.

Sometimes I look at her and think we cheated Death- that she would have been gone by now if the cancer was detected later, or if we didn't have access to the chemotherapy courses for Ewings Sarcoma. I worry that we're living on borrowed time, and that He'll come knocking.

But, I suppose every time we wear a seatbelt or take an antibiotic we cheat death! I have to keep that in perspective, and remain eternally grateful for human ingenuity and medical advances.

I just received the call from our nurse case worker- Millie is, once again, NED. No Evidence of recurring disease.

Millie and NED- 1 Year Anniversary

This week marked the one year anniversary away from chemotherapy. A year wherein we felt untethered, literally and figuratively. As oncology kids get attached to their broviac lines, parents also get attached to the chemotherapy regimen - that we are actively attacking cancer with every weapon we've got. It is a little unnerving to let go of both and float free in trust.

We received news today that Millie has made one year off-treatment with No Evidence of Disease (NED). Her CT and Bone Scans came back normal. Actually, the bone scan came back as "improved".

Our next scan is an MRI in September- which, by the looks of the bone scan, we assume will come back clean.

Although the threat of relapse or metastasis is real, and hovering, we breathe a real sigh of relief to pass this one-year milestone.

And, as always, we are so infinitely grateful for the love, support, light, and prayers that lift us through these times. Thank you.

My Little Radioactive Burrito of Love

Today we had our first nuclear medicine scan since November. Read the post from November 10 to be reminded of the tailspin I went into back then, when the bone scan was deemed "irregular".

Although I should no longer be surprised by both the bravery of our perfect patient as well as the excellence of the Kaiser medical imaging team- still, I am nearly speechless in admiration of today's processes. We arrived in the morning to have Millie injected with the radioactive material that would record her blood activity in the afternoon's bone scan. The technician took special care to call the CT team and ensure that the IV she was starting could be saved and used for Millie's subsequent scan- limiting Millie's pokes to 1. Millie sat still, and just squeezed my hand while the IV was set and the material injected. Even with a bit of poking around trying to puncture the vein (Millie's veins are slippery escapists, according to the many pflebotomists who have attempted to conquer them), both parties were patient and calm.

After the nuclear injection, we went up to the CT Scan room for a chest scan. Millie was still, and perfectly amiable to the team who doted on her. I could not see, from my nervous parental perch inside the glass windows, any noticeable lung nodules 0n the computer screens. Deep exhale, and on to the next scan.

I was strangely calm for the bone scan (pictured above and below). Somehow I knew that it would be better- that I would not see the dark spots noting increased blood activity that marred our November scans. I was relaxed in gratitude for my daughters excellent behaviour through all this day, and relaxed by the chit-chat of the technician, and somehow nearly floating above the abyss.

I watched the monitor as it drew her legs- the screen showing bone and blood activity as a thousand points of radioactive light as the machine slowly moved her through the scanner. I watched for the areas that showed the increased uptake in November- both legs and her pelvis. And to my naked, untrained eye, it was clean. The areas were no longer prevalent, or even noticeable. Her little body is repairing itself.

See for yourself. Here is the view of today's scan (when we get official results, we'll post here):

Bracing ourselves

The last week of June was a bit of a whirlwind. I was entertaining clients (as part of my contract job at www.keyevents.com) from New Zealand and staying overnight in the city after a long day of venue site inspections on June 28. Brian had taken Millie in for a blood draw (her first since December!) earlier that day at Kaiser in Petaluma. She was an absolute champ, according to Brian- she didn't cry and bravely allowed the phlebotomist to draw several vials of blood for routine testing.

As I was settling in to my hotel room late that night, I received an email from the lab on her results. I skimmed the counts and stopped at "Eosinophils"- which were rated far above the normal range. I know better, but I did it. I Googled "elevated eosinophils" on my smartphone. There, at 11 O'Clock at night, overworked and overtired, I read the unthinkable. The elevation can be a symptom of a tumor or leukemia. (Or allergies). I immediately emailed Brian to call our case worker first thing in the morning about this elevated eosinophil situation. Brian, like me, knew better but Googled it anyway- and neither of us slept.

The doctors say it is a symptom of allergies- and that if we were looking at another fearful conclusion we would see other areas of her bloodcounts elevated as well. With one suspicious eye cocked at Kaiser, we've agreed to let this one go.

We followed the scare with an 11 day family vacation that Brian orchestrated. We visited wonderful friends in Port Townsend, Bellingham, and Seattle Washington and visited cities in Oregon as well. The kids had a great time playing with their cousins in Seattle and met new friends in Port Townsend and Bellingham. It was a perfect family roadtrip.

Upon return we were back at Kaiser Oakland for a pedi-rehab appointment this week for Millie. It turns out that her drop foot has not improved over the last 10 months, which brings many questions to the rehab specialist. We may be dealing with simply the slow progress of nerve regeneration or it may be something more serious if the peronial nerve was somehow sewn over or impeded by scar tissue from her tumor-removal surgery. The bottom line is that she must go back into a brace and do extensive physical therapy to rehabilitate her foot. She is not particularly thrilled about this, nor are we as these fancy braces are very costly!

Millie and Griffin start school on Monday (they go to a "modified year-round" school)- which will be an unpleasant change in habit to these talented sleepers. They have loved summer vacation, and Millie has been swimming nearly every day (after sleeping until 9!)

We have a full set of scans due in August-including CT, bone scan, and MRI. We are grateful for your positive thoughts, energy, and prayers.

Three Months Later

(above picture from the Butter and Eggs Days Parade- Millie and Griffin rode on the float
while Brian rode an artbike alongside)

It's been three months since my last post. We all crept away from cancer for a while.

We crept so far that in May, Brian and I both (individually) were pulled back with dramatic, panicked realization that Millie's winter cough had not subsided after over 8 weeks. This realization woke Brian in the night, with a fear that he kept to himself. A few days later it swept over me and nearly buckled my knees as I boarded an airplane for a business meeting. You see, Ewings Sarcoma spreads to the lungs if a rogue cell was not destroyed with chemo. The thought of going back in, of not being finished, of returning to the battle and the terrifying thought of losing- all overwhelms and hides, waiting to surface in our heads on waves of anxiety. With this fear washing over me, I gripped the armrests on my flight and waited, staring ahead, until landing and a call to our nurse caseworker could be made.

Within days, Millie had a chest XRay in Petaluma- results: clean. no spots, no concern. Just a long winter cough. Like normal kids.

It's going to be like this for years, maybe decades. A pain in the leg, a lingering cough, fatigue, headaches- everything will send us into a tailspin. We gladly put up with this, of course, and hope that each future panic is equally unfounded.

Millie, meanwhile, goes forward happily. She is positive, cheerful, and sweet most every waking minute. Her hair has grown out to curl around the nape of her neck and over her ears, and she goes hatless everywhere. She eagerly reads books, works on math, and has done very well in school. I find it interesting that she has, of late, picked up many of the childrens' cancer books that she ignored over the months of treatment. She reads over and over again these picture books and stories of other kids- trying to make sense, no doubt, of what she went through.

We just had our 3 month MRI appointment last week. The scans are detailed and record images from the hips through both legs to the feet. The results: clean. Even the areas of distress and bone marrow depletion from November's scan seemed improved, according to the radiologist.

We're waiting now for an appointment with a rehab specialist to work on Millie's dropfoot. Although she's made great gains, the foot is still not lifting properly. We'll report on the doctor's findings here shortly.

Thank you for following our blog, and for all your hopes and prayers for Millie. We are lifted by your love.

Mardi Gras MRI

Once again, in the darkness of early morning, my parents arrived in our driveway to pick up Millie and me for the drive to San Francisco- Kaiser Hospital. I scooped the sleeping, warm, collapsed girl out of bed and held her tightly as I walked down the hallway, out the front door, and to the car. My parents followed silently with the bags I'd set out the night before, and we were off.

The anesthesiologist knows us. He was the chief of anesthesiologist for years at this hospital, but now just comes in for the pediatric procedures. This was our sixth time waiting in the tiny kids area of pre-op (there is a playhouse, art table, TV, and pictures all over the walls of past Kaiser SF pediatric oncology patients from the time when there was such a department in SF, before it moved to Oakland). Millie played and watched cartoons until it was time to go to radiology.

I thought I was handling it well, but the process of going under was different this time. Without her broviac to inject anesthesia into, Millie had to be put under with the mask. She resisted and clung to me as the doctor held it fast to her head. Her eyes were wide and red, crying loudly while locking her gaze into mine. Oh, poor thing..so dramatic, so awful. I kept kissing the top of her head over the mask and the doctor's arm saying it would be all right. Her eyes started finally to roll, and she was down. Once again, I was queasy and shaken by the experience.

The MRI took 2 hours. They looked at both legs from hip to ankle- taking first the base images and then injecting her with a contrast fluid to take a secondary scan. This second scan looks for increased blood activity in any areas that could indicate tumors.

When she was finally finished, she was wheeled out on the gurney, past the waiting room where my parents and I had been sitting. We joined the commute down to the second floor recovery area where she was handed over to the best post-op nurse ever: nurse Keith from New Orleans. He was waiting for us, and had a little video player ready with a choice of 3 movies, as well as snacks and juices. He was so kind and attentive to her, and also to us. He even had 3 chairs ready for us to comfortably wait for Millie to waken.

She did well, woke fine, and soon enough we were on our way home (with a quick stop at Toys R Us for a little present of an art set).

That evening, our nurse case worker called to let us know that the MRI showed no signs of tumor activity. The stress areas of the bones seemed smaller, but were still present. Our oncologist is going to call today to explain these areas to me so that i can better understand them.

We completed the day with a Mardi Gras dinner celebrating my birthday and Brian's dad's birthday. Brian's mom brought a bread pudding, I made jambalaya, and Brian made New Orlean's style BBQ shrimp over grits. Millie dressed herself in her Mardi Gras finest.

Note- our next visit with the oncologist isn't until May 10- she only wants to see us every 3 months for blood work and general check-in. Three more months without any medical intervention! The next scans will be in late May (CT Scan) and early June (MRI).

Keepin' it Clean

Millie and I were back at Kaiser Hospital in Santa Rosa today for her quarterly CT Scan. I had just returned from Dallas 12 hours before her appointment, and was too frazzled and tired to really think about the implications of the scan. It was as we were snuggled in the plastic waiting room chair that I thought of our last scans in November. At that time, I was equally nonchalant about the scans, and assumed all would be clean. The irregular results of her bone scan at that time deflated my soul.

This time, I had no real time to start worrying as now it was Millie who carried all the fear. With her broviac removed, she now had to undergo scans using an IV...the dreaded needle poke. She was tearful and clingly, but eventually let the technician and nurse do their jobs. Just 20 minutes later we were back on the road towards lunch and a post-scan treat.

Last week Brian took Millie in for her monthly check with Dr. Sharma, who let him know that she would need no more pentamadine infusions nor quarterly bone scans. She felt the nuclear contrast of the bone scans were too risky to use so often in a case like Millie. We will just have an MRI of the tumor area in March, and no real other medical interventions.

Our nurse called this evening to let us know Millie's CT Scan was clear. This is great news, as the areas most likely for a metastis is the lungs. The area most likely for relapse is the original tumor site, so we'll keep an eye on the MRI and post with the results in March.

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!