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.