Mama, Do I Still Have Cancer?

Millie asked me this last night as I read her a book called Kathy's Hats ( a picture book about a girl who learned to love her hats as she underwent chemo). It gave me pause, as I realized that she may very well no longer have cancer.

I responded "well, honey, you are still being treated for cancer, but you no longer have a cancerous tumor in your leg!"

We looked at her temporary cast, now decorated with marker-drawn flowers and hearts, and thought about what this all means.

It was my first time since the surgery to really think about where we are in this drama of ours. We had considered the surgery to be a milestone, and the farthest distance I could mentally and emotionally focus upon when caught in the turbulance of the diagnosis and early stages of treatment. The surgery has always been a date to reach, a roadside marker to pass as we enjoyed the break from chemotherapy with daily family fun.

The reality of the pain and inconvenience of surgery never registered in my mind. The poor girl has spent the last four days in terrible pain, and has asked us often for medication (this is from a girl who usually refuses any meds). The incision area and the top of her foot have been consistantly aching. She has been grumpy and irritated about her situation.

Through it all, though, she is still a trooper. Her sheets and sheets of artwork always display happy faces, rainbows, trees, hearts, and "I love you"s. She clumpfs around on her crutches through the house, and still finds a way to capture our poor, old, patient cat Elmo.

Today her pain is better and she went on an outing with Granny and Grandad for lunch at Hiro's (sushi and chicken katsu!).

Tomorrow we have a check-up with our surgeon, who may put a hard cast on her. We'll post pix!

Surgery

Okay folks, this is the milestone. Not only is it the halfway point in our regimen, it's where we have the tumor removed, hopefully never to return. Mama, Millie and godmother Annette arrived at the hospital predawn today to prep for surgery. Millie refused the oral medication, the name of which escapes me but I call it "roofies" because it really threw her for a loop when she was prepped for the broviac surgery, mainly because it tastes bad. So she wasn't pleasantly carefree as they wheeled the gurney away and both she and mama shed some tears at their separation. Later it was revealed to us by her anaesthesiologist that he and Millie had a nice conversation about hibernation since she had her ever-faithful stuffed bear with her (as always), and soon she too was hibernating. His and the surgeon Dr. Phil's bedside manner seems to instill confidence in their patients and their nervous parents.

I arrived around 11am after stopping at Toys R Us - they don't open until 10! - for Millie's request of a Barbie Vacation House (we have to spoil her at times like this) and she wasn't quite done yet. When I arrived I got the amusing story from Laura and Annette who were in the main lobby as the assistant surgeon literally ran by - mid-operation! - to get something he "forgot". Instant panic! Turns out he was merely getting a camera to document the tumor. Then, not long after, Dr. Phil strolled into the lobby with a grin on his face - he was VERY satisfied with the surgery. He said there were zero complications, very little loss of blood, and he removed a 10cm section of her upper fibula from which the tumor had grown. Much to my disbelief there will be neither any grafting of bone to replace it nor will it grow back on its own - it's completely superfluous! It's the go-to bone for plastic surgeons needing a graft donor! You couldn't pick a better bone to get a tumor in. Wow. Who knew? The muscle that was attached to that section was reattached to the tibia and she will have no loss of mobility when she heals. Again... wow.

We met her as she awoke in the recovery room and she was tired, thirsty and in a little pain which was administered to with a morphine drip. She seemed fine once the grogginess wore off and best of all, HUNGRY! With the combination of the appetite stimulant we put her back on and no breakfast today, she demanded... you guessed it: SUSHI! So dad followed the nurses as they wheeled Millie back up to her familiar 10th floor while the ladies went out yet again to the Piedmont Avenue Japanese restaurant where they got us all lunch. Millie had two maguro sashimi appetizers, five slabs of raw tuna each, as well as three more slabs from one of our dishes, a little rice, and we set up her Barbie house on the table across her bed.

When Annette and I finally had to leave Millie seemed okay, not in much pain, but very disgruntled by the full leg cast which itches and doesn't allow her to bend her knee. Two weeks of this "soft" cast, then up to four weeks of a traditional hard cast (which allows for more abuse of the leg) and she'll be healed. Last I heard from Laura, Millie's taking out her annoyance on her mama, but that's a sure sign that she's fine. And the surgeon revised their release schedule from potentially Sunday or Monday (she has to learn to use crutches) to a possible Saturday (tomorrow) homecoming!

Thanks to everyone for the well wishes. We've passed our milestone, and Millie's still a champion.

Round 6 - the Battle of the Tube

Somehow we managed to get daily doses of Ifosfamide (mustard gas) and Etoposide (created from the poisonous American Mayapple- possible side effect of drug: Leukemia!) in and around the many scans, Xrays, and doctor consultations that filled our 6 days in the hospital this week.

Millie was admitted feeling quite low from her mucusitis, and was in no mood to do much else than watch movies and peg me with beanie babies when she wanted my attention. As usual in the hospital, eating did not make her short list.

I should pause and note that we can go 5 days in the hospital without receiving one tray of hospital-provided breakfast, lunch or dinner. She simply will not eat hospital food. We pack in some food, and the rest is procured out on Piedmont Avenue or brought in by friends.

Millie's low energy and limited desire for interaction let me to the idea of teaching her some sign language to communicate her basic needs. I found an online ASL (American Sign Language) instructional site and in no time Millie was signing: bathroom, cookie, more, water, milk, hungry, movie, tv, please, thank you, and sushi (ok, we made that sign up after not finding it online).

Due to the worry that some of the chemo drugs may be causing neurological side-effects, Millie had several Xrays taken of her lower abdominal area to look for a possible spinal tumor or other reason behind the lingering nightly incontinence. The neurologist (aka Dr. Rachet) met with me after reviewing the Xrays and reviewing Millie's growth chart on Thursday morning. Although she had good news (there was no additional tumor or any neurological damage), she took it upon herself to advise me in heavy-handed terms that Millie's weight was too low and that she was "slipping off the growth chart". Millie was also was completely full of stool (which is coincidentally how I viewed the neurologist) and needed a drastic flush of "Go Lightly" (a laxative whose name is about as truthful to its purpose as the Clear Skies Initiative).

And so began the feeding tube war.

The tube was inserted into Millie's nose on Friday morning, just before her bone scan. The tube is yellow and marked along the side in inches, like a ruler- so you can easily see how many inches of tubing goes from her stomach, up her throat, through her left nostril, and down behind her ear and down her nightgown to be attached to the feedbag. Yep, a feedbag. A large purple bag to hold quantities of liquid nutrition to be dropped into the tube using the measured timed dosing of the feeding tube pump. Millie's IV pole was something like those flying swing chairs at the carnival- with all the drugs, saline, chemo, and the feeding pump and bag hanging off of it.

I will spare you the details- but suffice to say the GoNotLightlyAtAll worked its magic and, admittedly the liquid nutrition did too and Millie perked up quite a bit by Saturday- when she ate about 8 oz of sashimi and a bunch of graham crackers.

Our oncologist must have been scared by the Neurologist, and she too jumped on the "slipping off the growth chart" bandwagon- demanding that we stay in the hospital through Monday so that Millie can have 3 full liquid nutrition meals each day and so that we may receive feeding tube equipment and training for at-home care. She was requiring that Millie keep the tube in her nose for a week! I called my mother, who still has all the notebooks she kept of my own growth- and low and behold- Millie is nearly exactly the same height and weight that I was at her age. Hurumph!

After long consultations with Brian and much moxy gathering, I put my foot down. (And my knees in a begging stance)- and pleaded, reasoned, negotiated, and promised up-down-left-right that we would get Millie to eat and gain weight without the tube. I flattered. I agreed with her. I understood her concern. But as Brian said "there is no way she is coming home with that tube in her nose". The doctor acquiesced, with the caveat that we must come in one week to have Millie weighed. (Reminds me of when Millie was a newborn and I had to take her every day to be weighed with the threat of the doctors pushing formula if she wouldn't gain weight nursing. Thank goodness then, like now, we were able to triumph our own way)

And let me tell you, since we've gotten home she's eaten very well. Thanks to Daddy's cooking and some doses of Megace (appetite stimulant), she seems to be on the upward swing.

Final note- Millie's Xrays, CT-Scan and Bone Scan came out CLEAN! No evidence of the cancer having spread. We also had our pre-surgery MRI this morning, with Millie once more being anesthetized for the procedure. She did very well (sleepily signing to me "home" upon coming-to). The doctor said he noticed a significant reduction in tumor size from our first MRI back in December. We will write later this week of the official results.

Yahi...!

Laura didn't mention how well Millie has recovered from her rough week, so I just wanted to put our followers at ease: even though the ulcers on her esophagus haven't completely abated, they're getting better and she's eating again. She attended Disney on Ice with her mother and her cousin Sammie Bell (a former Disney princess!) in Oakland on Sunday. She enjoyed the performance, to which she wore her best princess outfit, gobbled cotton candy and cheered along with the crowd, and then they proceeded to take Samantha to the Oakland airport to return to SoCal. Laura called me from the traffic gridlock exiting the arena asking if I knew of any food between them and the airport.

I asked, "On Hegenberger?!?!? You'll be lucky to find a Carrow's style coffeeshop amongst the sleazy motels and fast food." Lo and behold they found a Japanese restaurant, where Millie bonded with her adult cousin while consuming her favorites Chicken Katzu and Maguro Tuna (Ahi) Sashimi (which she calls "yahi").

Still complaining of a sore throat and eating little, she got ready for the nurse's call yesterday. She needed good blood counts to continue with chemo and had last registered extremely low in platelets (the third type of blood cells along with red and white). When Marta called she told us that Millie qualified for sticking with our schedule with 72,000 out of a necessary 75,000 platelet count - they figured she was on her way back up so... all systems GO! I never thought I'd be happy about more chemo, but sticking to the schedule toward surgery, as Laura mentions below, is KEY.

And honestly, aside from painful swallowing she'd been fine - no more vomiting since the first time and no more blood in her stool. They said it could take up to two weeks for her to regenerate her platelets, which would delay everything including our scheduled surgery, but that little machine just bounced back AGAIN! Six-year-olds are amazing.

So today we checked in early for Round 6 (the same regimen in Rounds 2 & 4 were much easier on her than 1, 3 and 5) and headed down to Piedmont Ave. for... more yahi!!! She ate 8 slices of RAW TUNA, a bit of Chicken Katsu and a little rice, then headed once more into the fray, all the while being the silly (continually harassing Daddy is her favorite pastime) and happy little girl we know and love. I remarked to her mother, "We should get her blood checked for mercury poisoning," as ahi has a bad track record these days (see: Jeremy Piven), but Laura chuckled and said, "She's been getting intraveinous mustard gas - how could tuna hurt her?"

She's got a point there.

Milestone- Cycle 6

We've had a difficult week this week, but Millie has made it through and made her counts to boot. Her platelets were low, but improved enough to go ahead with our 6th cycle of chemotherapy- starting today.

We're so glad to stay on schedule for this cycle, as our surgery is now scheduled for March 26 and a delay in the 6th cycle would mean a delay in the surgery.

This week in the hospital we've got plenty scheduled on top of the daily chemo- we've got a bone scan, a CT Scan, and another MRI on Monday. We should learn a lot about how the chemotherapy has attacked the tumor.

After this cycle, we have no more chemo in March and much of April as her body gets strength for, and recovers from, the surgery. This has been a milestone for us- only thinking as far as the surgery date- just focusing on the first 6 cycles of chemo, and getting the tumor removed. And we're nearly there!

Monday Mucus!

Nothing like sitting down to breakfast when your child starts vomiting blood and viscous, stringy, transparent mucus! The amazing thing is she wasn't alarmed. After nearly choking on her muffin because her throat and/or esophagus is so swollen with mucus (apparently due to mucusitis, where the digestive tract excretes massive amounts of mucus to insulate the sensitive tissue from ulcers and stomach acid), she gave up on her meal and motioned for me to follow her to her day-bed upstairs to chill with her cat and her TV. Back to the doctor today (thankfully local again) and she seems well. Attempted a raw carrot (I was surprised at the request but went with it), but her throat didn't quite allow for comfortable swallowing. Still, she's not too bad off - ask her how she feels and she gives you the so-so hand gesture, but with a smile - and she's in decent spirits despite her discomfort.

Laura's previous post goes into detail about what's going on, but I just wanted to chime in and say that after some gutwrenching worry today on our parts her oncologist says she'll be fine and can stay home and should recover soon. This may delay her next (6th!) chemo treatment next week, but that's okay by me. She's still a trooper, so please don't be alarmed. Minor setback is all. I keep thinking of Laura's description of the nurse in Santa Rosa who took a look at Millie's charts, registering the potent cocktail of chemicals she's being bombarded with, then took a look at Millie... shook her head, and remarked something to the effect that she's never seen a child so young do so well with all the shite she's being fed.

Soft foods for now... too bad it's unlikely I'll sell her on the split pea soup I'm making.

Side note: Millie has grown an inch since being diagnosed three months ago and undergoing two+ months of chemo. So apparently her growth isn't being affected. She'll likely be six feet tall as an adult at this rate. And she's clamoring for dinner now - gotta go...

UPDATE: Tuesday morning. We managed to mitigate some of Millie's discomfort pretty well last night with a combination of her "magic mouthwash" - which we use to combat mouth sores, which this basically is except below the esophagus and potentially throughout the digestive tract - and the exotic drug known as... Tums. Yep, one Tums chewed up 3 or 4 times a day seems to help with the irritation. She's in good spirits, perhaps a little fatigued, but that will be remedied by the hemoglobin transfusion she's getting Oakland today. More tedium of the drive both ways, waiting two hours for a blood match, then sitting through a three hour transfusion. But she can watch DVDs while she's in the clinic, visit with her favorite social worker, and then her mom promised her a trip to Ikea for her favorite meatballs since they'll be in the neighborhood. These little things help immensely.

Fever, Mucusitus, and Hopscotch

If you had seen Millie at a park near our house on Saturday afternoon, you'd never know she had just gotten home from 3 days of chemotherapy followed by long return visits to the doctor on Friday and Saturday. By Saturday afternoon she was running with her brother, swinging across the monkey bars, and playing hopscotch.

Cycle Five of Chemotherapy incorporated 3 drugs: Cytotoxin (i.e. mustard gas), Vidicristine, and Doxorubicin (interesting fact- Doxorubicin was discovered in the soil surrounding a 14th century Italian castle)

This was the drug combination that really threw Millie on her first round- and it got her again. The morning after we got home from the hospital, Millie developed a fever of 101.8. The fever dropped in the day, but the fact that it presented necessitated a doctor's visit and preventative flush of antibiotics.

I feel almost glad this happened, as we learned that there is a nurse in Millie's pediatrician's office here in Petaluma who has experience with pediatric oncology and specifically with administering medication through her Broviac line. It turned out to be a great chance for Millie's regular doctor to see her again, and we were thankful not to have to drive to Santa Rosa in a storm.

I am drafting a letter in my head to Kaiser Permenente praising the care we've received for Millie, and our experience this week is a great example. On Friday, we were swept into a clean room immediately upon arrival. The nurses fussed over Millie, giving her untouched books to read and bringing a tv into the examination room for Millie to watch a movie during her IV infusion of liquids and medications. They took care of all the registration and check in by just asking for her card from me once.

On Saturday, the Petaluma office was closed, and we had to get Millie's 2nd antibiotic dose in Santa Rosa. Usually on the weekends this must be done in the ER, but the Santa Rosa office opened the chemotherapy infusion clinic for Millie and let her go there. This clinic never handles kids, but the nurse who came in for Millie had experience at Childrens Hospital. Once again, I never had to wait, fill out paperwork, or have any hassle. The nurse, Diana, swept us in and put Millie into a waiting chair with warm blankets and pillows. Diana knew she was going to help Millie that morning, and had brought in a stuffed animal, pens, and bubbles as a little gift.

We love the care and ease of being in the Kaiser system- but sure wish the hospital had private rooms or at least an oncology ward.

Monday update - Millie evidently has "mucusitus", which causes ulcers in her digestive tract. She was throwing up blood this morning, which is shocking and scary to witness. This condition will not improve until her counts go up again, a week from now. Poor thing!