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.