Hark! The Herald Angels Sing

Oh, the glory of good news. We heard today that Millie's CT Scan and Bone Scan came back clean. There is no evidence of the tumor having metastasized. This means that her prospects for long term survival, dare we say "cure", are up around 80%.

We have a tough road in front of us, as the treatment remains the same. We are just unbelievably lifted by the confirmation that this has remained localized to her leg.

Today was Millie's last day of school until at least September. I took a picture of her classroom to post up on her wall as she goes through the months of treatment. She'll be with the same class when she returns, as she is in a Montessori classroom where the kids stay with the same teacher for several grades.


We are so grateful today for this good news, and grateful for the wonderful support and love from all of you.

Testing, Testing

I have said a few times that Brian and I sway from heartbreak to logistics to hope and back, often many times in a day. Today we were in full logistics mode as we took Millie for 2 more tests that need to be completed. Like Santa, we have a checklist. We must have 5 tests done before we meet with our pediactric oncologist for or "chemotherapy briefing" next Wednesday. Today we crossed off 2 in one day- both rather intense for a 6 year old girl. The first test was a bone scan, for which Millie was injected with a radioactive substance. This is injected beforehand, then we had a 3 hour break to let the compound fill her body before the geiger-counter portrait is taken. After the first injection, during the break, we scheduled the CT Scan (which also required an IV of some compound that is inexplicable to me).

The nurse was hoping that the same IV that was used for the 1st injection could be reused for the 2nd- so she taped it down and left it in for the next test. Millie had to lie still on the gurney until it was time for the next test- over 40 minutes without moving her arm (as the nurse said it was very precariously positioned). So glad I had the Tinkerbell movie on my iPod!

Unfortunately, the IV wouldn't work for whatever connector the CT Scan required- so Millie had to have a 2nd IV put in to her other arm. Not good news, but she held up. She cried tears of frustration at the process, and the undending preparations that the CT Scan technicians were fuddling about, but when it came time to be perfectly still and endure the scan, she performed perfectly. I donned an Xray apron with handy thyroid cover and held her hands as she went into the machine. A loud, robotic voice would say "BREATHE IN, HOLD YOUR BREATH" then "BREATHE" as they scanned her chest. Pretty weird.

During the break, we took her to lunch and then to Toys R Us for a treat. She picked out a princess purse/jewelry thing (no surprise) and the game "Battleship" for Griffin. She always thinks of her brother. Even when in the pediactric oncology unit at Kaiser days earlier, when given a stuffed animal she asked for something for her brother too.

The second test was a bone scan. This is the geiger counter picture that is made of one's skeleton. This is amazing technology, folks! (Too bad for the radiation and all...) I watched the image like a hawk on the screen and clearly saw the tumor. I hesitantly say that i did not see any other irreglarities, but of course I am not a radiologist- and also did not have the view that they would have of the test.

I believe we'll find out tomorrow about the results. The big one is the CT Scan, as Ewings Sarcoma tends to metastisize first in the lungs.

Other upcoming tests are an EKG, Blood work, and a bone marrow sample (also super important, to tell if malignant cells are in her marrow). The first 2 we'll get done by Wednesday, and the bone marrow will be drawn when she is anesthesized for the placement of her broviac line.

Logistics and writing this blog keep me from succumbing to emotional darkness- as I step outside myself to become somewhat of a voyeur rather than a participant.

Millie was a superstar today. We pray and carry tremendous hope for good news tomorrow. News that this tumor has remained localized.

We are ever grateful and overwhelmed by the messages, calls, and posts of love and caring for our family and for Millie.

How we first made our appointment

I thought I should post about how we got to the pediatrician in the first place. I first heard Millie say that her calf hurt on the Wednesday before Thankgsiving Day. She was wearing her new birthday boots, and so I assumed that the zipper was bothering her. I looked at her leg and saw there was no redness or bruise, so we changed her shoes and went on with our day (and on this day I took the kids on a long walk around Petaluma- about 2 miles all told).

The previous Saturday, Millie and Griffin had gone to their friend Hunter's birthday party at Redwood Empire Gymnastics. Lots of jumping, climbing, running, etc. On Sunday, we had Millie's birthday party here at the house, and rented a jump house. Again, lots of running and jumping.

In retrospect, Brian and I are grateful for the 2 solid days of stress on her bone, as this seems to have gotten her to the place where her leg hurt enough to really say something. If she had not had this activity, perhaps we would have gone weeks further without knowing.

In school the next week, Millie seemed to limp a bit, and run with a little hop- favoring her right leg. On Wednesday, Griffin told us that Millie had not participated at recess (very unusual for her), and Brian and I noticed her calf was swollen and hard to the touch (unlike soft muscle). I immediately called the doctor for an appointment. He wisely directed us to Xray, even though Millie did not appear to be in tremendous pain or immobilized. We are grateful for this quick action by our pediatrician.

The 12 Days of Christmas

We have 12 days until Millie checks in to Kaiser Hospital Oakland for her first stay and round of chemotherapy. For now, we have a happy and, to all who see her, healthy and active kid. I guess what seems so illogical is that we are going to turn this "healthy" kid into a sick one through poisoning her blood with a blend of toxic drugs. It is all so hard to beleive, but we wil do anything and everything to kill this tumor and rid her of cancer.

Tomorrow, December 17, we'll go to Kaiser Hospital in Santa Rosa for a bone scan. She will get a shot of some lightly radioactive material (!!) and will come back 3 hours later for the scan. We are praying that this scan will show no further tumors.

If you have any interesting links or information you'd like to share, please post a comment to these posts so we can all share the knowledge.

The Diagnosis

Today Millie was diagnosed with Ewing's Sarcoma.
Here is what CureSearch.Org says about this cancer: Ewing sarcoma is the second most common tumor of the bone. It most often affects bones of the pelvis, the tibia, fibula, and femur, and can also begin in the soft tissues. This disease most often occurs in adolescents, with nearly half of cases arising between the ages of 10 and 20.

We visited the specialist, "Dr. Phil" who interpreted the MRI and biopsy to us. All findings supported Ewings Sarcoma as the cause. Dr. Phil showed us that the tumor is approximately 30.5 mm in width, and has not touched the tibia or the knee.

He described the typical treatment plan to us, which would start with 3 months of chemotherapy to shrink and stop the tumor, then he'd perform the tumor-removing surgery on Millie's leg. After surgery, there would be another 3 months of chemotherapy. He was very optimistic and compassionate- and even mentioned that Millie would be able to stay in school and would recover from surgery in 6 weeks or so.

He then referred us to, and got us an appointment in, the pediactric oncology group. We ate some quick lunch in the cafeteria and headed over to this other building.

The waiting room in the pediactric oncology area is bright and airy- the artwork is sunshiney and there is a beautiful fishtank and children's tables. I found it difficult to show my heartbreak and tears in the company of two brave kids waiting for their chemotherapy appointments. I realized, looking at Millie playing happily with her full head of wavy hair and energetic laughter, that she would be soon just like these other kids.

I guess that was optimistic of me, as we soon found out that the treatment for Ewings is much more intense than many other cancers, and outpatient or home-treatments are not a possibility.

We soon met one of the pediactric oncologists handling our case- Dr. Anjali Sharma who was kind and compassionate and tried not to overwhelm us.

The hardest news was that all of Millie's chemotherapy will be "inpatient" and administered durin hospital stays that will be 3-5 days in length and alternate every other week. This makes it impossible for her to stay in school.

The danger of Ewings is that it can become resistant to one type of chemotherapy drug, so a combination and intense dosage of 5 drugs are used.

Our next steps are to get a CT Scan, Bone Scan, Blood work to see if there is evidence of spreading of the cancer. Next Wednesday, December 23, (my Mom's birthday), we will meet with Dr. Sharma to discuss our entire chemotherapy treatment plan.

At this point, she'll check in to the hospital for her first round on December 28. At this time, they'll install a "Center Line Broviac" into an artery in her chest to manage an easy "plugin" for administering medicine and chemotherapy, as well as for drawing blood. They will also take a bone marrow sample for further testing to see if the cancer has gotten into her bone marrow.

Everyone is hoping that this cancer is localized- that it has not spread. If so, her chances of surviving this are upwards of 80%. We love stories of Ewings Sarcoma survivors- there are many!

The MRI

Knowing how important the MRI and Biopsy were for us to start on the road to repair, we eagerly awaited the call from the Oakland Radiology group to schedule our appointment. Imagine our surprise when the dates offered were December 16 and "into January".

We honestly didn't think about struggling with beaurocracy on top of everything else. We were grateful for our friend who is an executive at Kaiser,who promised to help us get in sooner.

Luckily, a cancellation in San Francisco got us in on December 10. My parents were kind enough to drive me and Millie to SF early on that Thursday morning so that Brian could get Griffin off to school.

Millie was an absolutely perfect patient- from start to finish. She had to be anesthetized- but went down easily (the anesthesiologist said "this will be easy for her- but you, you need a drink").

The picture shows her waking up after the procedure. She was mostly concerned with the IV in her leg, and once that "tape" was off, she settled back with a popsical and a movie I had downloaded on my ipod. Later that afternoon, at home, she was playing with her brother like normal.

(Although she knows she is not supposed to "run, jump, or roughhouse", she still zooms around with very little complaint or limping.)

The Start of it All

It began with this image, taken on December 3 at Kaiser Petaluma. The image shows how the top of her right fibula (the small bone next to the tibia) has been pretty well decimated by something. The pediatrician, Dr. Hensley, showed us the image on the screen saying "this was not what I was looking for"- and began to explain how a normal bone should look, and how this area of her fibula suggests a lesion.

I stoppped him and choked out ""so, when you say "lesion", you are talking about..."

"..a tumor" he said

He continued to show the splintered areas of the bone, and recounted his conversation with the bone tumor specialist with whom he'd shared the xray prior to coming in to the examination room. He said the specialist was very optimistic and confident about curing Millie.

The next steps were to get Millie an appointment for an MRI and biopsy.