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.