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.