One Month In

We had our one month anniversary of treatment on Thursday, as we left the hospital after completing Round 3. Our first roommates, the Abrego family (check their website- very cool! Anyone out there want to help us make one like it?), were in the hospital too, for Hailey's penultimate chemotherapy round.
When I met them a month ago and spent some time talking to Hailey's mom, I was unable to speak without tears. I was shellshocked, unmedicated, and suffering waves of overwhelming darkness. She commented how well I looked this time. "Adjusting to the new normal", I responded.
In my darkest hours over the last month I knew I could no longer find strength in myself or in divine providence. I wrote in my journal that I would recognize the light in Millie and build my strength off one smile at a time, day after each new day. She has helped me build back confidence and optimism to a point where if she should slip into discouragement, I will now be ready to lift her as she has lifted me.

Round 3

I am posting from room 1002a. We're in the bed by the door, just a sneeze away from the nurses station (into whose speaker wall all the pinging machines in all the rooms broadcast in chorus). We were in the bed by the window last time- this visit the window bed is occupied by a precocious 4-year old chemo patiet and her mother.

Millie is doing very well with this round (although most of the side effects will come once we get home) - she has kept her appetite, been a little less grumpy, and has played a few games in between the obsessive viewing of Looney Tunes DVDs (um, thanks, Chad). We've had no nausea!

She has also gotten comfortable being alone in the room, and feels free to dispatch me to acquire her craving du jour on nearby Piedmont Avenue. Today it was a burrito and raw carrots. Yesterday it was an enire cantelope. It is a nice break for me to go out walking, and to breathe fresh air. I may try to drop into yoga classes in future visits if this works out. (By "yoga classes", I most likely mean pedicure appointments).

Her highness is demanding a snuggle and movie with me- and so I sign off here.

The Incredible Eating Machine

It just devoured six hardboiled eggs (whites only) while I watched in astonishment this morning. Between dinner Saturday and lunch Sunday it consumed seven bowls of penne pasta (plain, with butter) and an entire head of cauliflower (roasted with salt and olive oil). Over the past five days it has demolished two loaves of sourdough bread (with butter) and an entire family-size box of Special K cereal (with milk and sugar). We've lost count of how many gallons of milk we're purchased to satiate it. And yet it just keeps on eating.

At first we thought it was the appetite stimulant that Millie takes along with anti-nausea medicine to get her eating again after chemo. But we took her off that five days ago. And like the Very Hungry Caterpillar, she has eaten her way through her days of convalescence, with the constant cacophony of Looney Tunes and Sesame Street in the background. Maybe her body is instinctively fattening itself up before the next famine, the onslaught of chemo to come which allows her to keep nothing in her stomach for days on end, and has turned her off many of her favorite foods (notice the preponderance of white/beige bland foods listed above). All we know is she's eating, really eating, and to THIS dad, with his food-centric viewpoint, this is the surest indicator of health imaginable. Insert huge sigh of relief... of genuine coping... here. Round Three starts tomorrow.

UPDATE: It has now eaten its way through half of last year's Iowan corn crop (in the form of popcorn, with butter and salt) - is there any white/beige foods we've missed?!?!? It's voracious!!!

Griffin's Birthday and a Whole Week with No Doctors

For the first time since December 5, we made it 7 days without any medical visits. Millie did go severely neutropenic again on Friday, but the low counts were not accompanyied by a fever- so no urgent hospital visits.

We're happy for this break - and our gas tank is pretty happy too.

We had made contigency plans with my parents in case Millie had to go to the hospital for netropenia - as Saturday was Griffin's birthday party. Brian and I wanted to both be present for these few hours to celebrate our wonderful boy's 8th birthday. (Millie and I will be in the hospital for his actual birthday on Tuesday). We're so glad that the clouds parted literally and figuratively to allow us to have this special day for him.

Brian's parents, who live nearby on a cul-de-sac, hosted the group of boys and girls (we obviously cannot have kids over here)- and we organized a "bike rodeo" where kids could decorate bikes and maneuver through the course Griffin set up in the cul-de-sac. Of course, the whole thing was hastily organized- and it began to pour as the party ended - but the kids had fun. Griffin was so happy to be surrounded by his friends (and I am sure to have the day focused on him for a change!)- and for his brand new bicycle.

Griffin has been such an amazing support through this past month. He remains cheerful and engaged with the family, in school, and with life. He is patient with his sister's moods and the constant family attention on her situation and the daily management thereof. We are so grateful for Griffin.

Comfy and Cozy Inside, Stormy Outside

Millie woke up today (day 9 of the latest chemo cycle) feeling good, getting dressed, and mowing through 3 pieces of cinnamon toast. She wants to go shopping to buy Griffin a birthday present today while he is in school. Her blood counts were good yesterday, so I hope we can get her out for this little excursion to Hobby Town. She must be feeling pretty housebound as the storms keep us from taking walks or running errands.

Here is a picture of Millie and Brian playing "Littlest Pet Shop" on Wii. I couldn't stop giggling at Brian's character prancing around the cartoon landscape in the game. His quote to me: "Yes, I'm the pink pony".

We've been so grateful this last week for the meals being delivered to us through the organizing team at the Grant School Community Commitee. It has been a tremendous assistance and relief to us to have these deliveries. When there are mornings when just getting out of my robe is a major accomplishment, it is especially comforting to know that there is a caring friend out there arranging to keep us fed.

Home and Lounging

Griffin got the chance to play with his cousin Cosmo in Berkeley yesterday while Brian came over to the hospital to spring us out. The wait to leave took longer than expected as Millie received the first, of what we assume to be many, blood transfusions. She took the transfusion in stride, and perked up quite a bit afterwards with pink smiling lips. I think I need one.

Brian took charge of his weary girls and got us dinner and in bed by 8. He made our bed with fresh clean flannel sheets into which I sunk so happily. Millie was in a good mood as well, and slept soundly until the anti-nausea meds wore off at about 11. The night got long after that. We're pretty sure she threw up the meds- but couldn't just give more. Finally, at 6am we gave another dose and she hasn't thrown up since.

The vomiting is so sad...she retches and shakes and brings up violently and loudly just minuscule amounts from the bottom of her quite empty stomach. Poor poor thing. We hope to get a handle on the nausea to keep her comfortable and not queasy for the remainder of treatment. That is our overall mission- to get through this keeping Millie as comfortable as possible.

We hope for a good, quiet week at home. We know, however, that we are in a neutropenia danger zone all week and may find ourselves back in the hospital. The danger zone is 7-10 days after chemotherapy starts- and ends when her white blood count starts to recover at about 11-12 days after chemotherapy ends. Of course, we only have 9 days between the end of the last round and the start of next one on the 26th- so she may not recover sufficiently in between. She needs to have an ANC count of 1000+ to start chemotherapy- which may be difficult to manage with just 9 days.

Although intense and very tough on Millie and the family, we hope we don't have to delay chemotherapy rounds and can keep to the 2x a month schedule. This schedule has proven to have better success than waiting 3 weeks between chemotherapy rounds. We want to stay with the more successful regimen- but are prepared for delays.

A note on our 6 days in the hospital. We're so pleased to have this second round completed, and only 6 more of these long stays to go out of our treatment plan. It actually was not so bad- as Millie was relatively comfortable for the majority of the stay and handled the chemo well. We were treated with wonderful visitors that broke up the time, and we had a great night nurse for a few of the nights who tried to keep mama asleep as much as possible.

Brian and I feel stronger and more confident about managing this, and just pray for limited roadblocks.

Word For the Day: Decadron

I keep an organizer/calendar in which I write daily notes on Millie's temperature, blood count, food intake, mood, energy, etc. On Wednesday evening I ran out of room in the space alloted for the 13th of January merely by recording each time she vomited, punctuated by the names of the various pharmaceuticals administered to try to stop it.

It was a rough night.

At least we resolved the drama of the 90-minute interval bedpan duty by employing a "wrap pad" ("don't call it a diaper, don't call it a diaper, don't call it a diaper") for the late night hours and putting our nurse on task to check and change it. Go Mama.

Thursday, however, we administered a 4th and 5th drug to our 43-pound princess warrior; a drug called Decadron was given 30 minutes prior to chemo and a patch of scapalomine was placed behind her ear to alleviate seasickness. (And possibly scurvy, who knows?).

Thursday night she fell asleep at 5pm after a day filled with lovely visitors and lots of turns in the art room (Millie's favorite place). Chemo started at 6pm in a new, shared room to which we had been abruptly moved. My anxiety was quaking out my pores at the thought of a repeat of Wednesday night in the new cramped quarters with another (non chemo) family.

I got myself all stressed out for nothing- as the other family turned off televisions and lights by 8:30, and Millie slept through the chemo completely with no waking to retch. (Thank you, Decadron!)

At 7am this mornng she woke cheerfull. We were in the playroom by 8. She has been great all day. We had morning visitors: Lisa (who brought cheer for Millie and strength and knowledge to me) and Sandy (who gave me a facial and shaped my eyebrows!)

I took my normal road and got quite stressed out about starting chemo even earlier today- 3pm- but again, for nothing. Chemo and post-chemo hours went well. She was asking for pizza during chemo infusion (which visiting Brick went and got for her)! And then asked for chicken nuggets (picked up by Tricia on her way in).

Tricia came down to spend quiet evening time with Millie and chat with me, which was just perfect and serene. Brick came back to visit in the evening since he had to leave after a short time in the afternoonto. As Millie slept, in the darkness of the room with the view of the city lights of Oakland downtown out the window, Brick, Tricia and I talked and laughed a bit, and I felt peace. Or it could have been the beer. (Thanks, Brick)

Round Two- Reporting Live from Kaiser Foundation Hospital, Oakland

My company sent over a USB Modem to use while in the hospital- how cool is that? I can now get online here (no wireless at the hospital) to keep connected to the outside world. My company, Genesis Creative Group and coworkers have been so supportive over this last month of drama. They have been amazing.

Monday was a good day for us- Millie's teacher came over and brought letters from Millie's class, and conducted a science experiment with Millie and Griffin. That evening we went out to dinner- and I had 2 margaritas. Zowee. Here is a picture of our dinner excursion- check out the cape. Our friend Lizzie Leu (www.shoplavish.com) had one of her suppliers for her store make this for Millie.

We checked in to the hospital for 5 days of chemotherapy. The chemo goes for 2 hours- first a drug called Isosfamide for an hour, followed by Etoposide. They follow that with something called Mezna that helps keep Millie's bladder lining stable. The bladder is the squeakiest wheel in this chemotherapy process so far. Since she is being flooded with IV hydration, her bladder fills to the brink quickly. We had some issues last night- so for the next 4 nights I will try to wake her every 90 minutes to 2 hours to pee.

So far, she is doing ok after the first night- but she seems very pale to me. She also has some nausea and is pretty grumpy. It can be pretty defeating to be with a grumpy patient all day and night- so I am glad for this internet connection to reach outside these walls. (I just now learned of the earthquake in Haiti- so, so sad).

Love and thanks to all for your thoughts and prayers for Millie, for other children battling cancer, and for all the children suffering and lost in Haiti.

Home, Hairless, Happy*, and Hungry

At the hospital on Friday, Millie handed me her bear in frustration. "My hair is falling out all over the place and it is so annoying!" I took the bear and started what was to be a 48 hour exercise in repetitive motion as I constantly plucked and pulled strands of hair off of pillows, pajamas, Bubby the Bear, and, of course, Millie.

Her hair had begun to dreadlock as the hair falling out tangled and matted around the live hair. By Saturday evening (after a lovely shower in the hospital) she was wearing a matted helmet. I fretted and regretted- should I have cut it short to begin with? Did I preemptively ruin the healthy hair? Brian had suggested getting her a pixie cut early on, which would have eliminated this dreadlock drama. She was against any hair cuts at the time- but perhaps I shold have pushed. As she grew more itchy and annoyed by her hair, I repeated "I will cut it off when you are ready".

In any case, she could no longer tolerate her itchy hair fiasco by Sunday evening and told me I could cut it. After dinner (she ate very well today!!), as we enjoyed a family movie night, I cut all the matted hair away. She has very little left, but she is amazingly beautiful none the less.

I will post a picture when she is ready to be photographed, but I tell you- her beauty shines through. Her smile and shining eyes radiate and she is truly beautiful, even with her hair in patchy, close cropped, shambles.

Millie had a good day today- eating well, playing with her brother, cuddling with her daddy and playing some games with me.

* I should mention that Millie is NOT happy about her hair. She has cried over it many times saying "it's not fair". We hold her and agree- and tell her how beautiful she is, and show pictures of other kids with cancer so she doesn't feel alone. And of course, repeat over and over "it will grow back".

Neutropenia... and optimism

Sorry for being so pessimistic last night - it seems I have a regressive gene in my makeup that dates back to prehistoric times, when everything is worse and scarier after dark. I just hate to see my little girl suffer, and my primal father instinct takes over. I felt like lashing out at those who are helping her, because they are also making her sick! People who know me know that I'm not much with the blind faith thing. But I do have faith in science, and to a lesser degree in medicine, and although the medicine is currently what's making Millie sick (it ain't the cancer, it's the chemo) I have to have faith in a scientifically proven outcome. Statistics don't lie. And the statistics point to a highly favorable chance at remaining cancer-free for life with this chemo regimen. I just have to remember the mantra, "There will be good days, and there will be bad days."

But I'm much better now, because Millie is better! I suppose it was seeing her in the hospital today being her charming self, smiling, laughing, making jokes at daddy's expense, taking me on a tour of the facilities with her I.V. tree in tow, coloring, drawing, reading, and... EATING! After work I gathered up some things for Millie and her mama's second unplanned overnight in the hospital, including some white rice and chicken nuggets (the kind shaped like Mickey Mouse's head). The most important items in my care package were jammies for mama and soy sauce & ketchup packets for Millie's meal. And she ate! Not like I've seen her, obviously, but more than she has in days. The mouth sores are better, her fever is gone, and her white blood cell count is back up. Neutropenia is defined as a count less than 1,000. Severe neutropenia is defined as less than 500. When Millie was brought in yesterday her count was 40.

When a person is neutropenic they become lethargic, feverish, develop ulcers of the mouth and are unable to fight off the simplest of infections. Millie has a private room for this reason, and has to wear a mask if she leaves the room. Unfortunately Laura's cot is still hard as a rock. We'll find out tomorrow if Millie had any kind of bacterial infection and what her white blood cell count is (it has raised to about 170 last we checked, and it shows in her spirit). If she's above 500 again she can come home. Cross your fingers!

UPDATE: Laura just texted me: "Millie said 2day was a good day cause daddy was here."

Back to the hospital... unplanned.

As indicated in the previous post, Millie took a turn for the worse yesterday after three days of relative normalcy (if you call lethargy, nausea and taking in about 1/10th of your usual calories "normal"). Her grumpiness, fatigue, low-grade fever and inability to eat turned to extreme nausea, pain in her mouth and a fever of 102 by morning. RED FLAG. "Call them..." I said. The oncology clinic said to come in so my mother and Laura took Millie to Oakland for an evaluation and I stayed to man the household and take care of Griff.

Millie's blood (or white blood cell...? or platelet...?) count was extremely low (Laura can give you the proper term when she recaps) and they wanted to admit her to the hospital overnight. Now she's getting intravenous nutrition, a new antibiotic (the last one gave her a rash) to prevent any infection, an appetite stimulant, a laxative and a stool softener (she's totally constipated). Hooray! (sarcasm) Next up it'll be a transfusion! Let's hope not. Let's hope she gets it back together by tomorrow or she may have to stay more nights, and Laura and she weren't even prepared so I'll need to run them some of their things after work tomorrow.

They warned us that Day 7 is often when the previously administered chemo's course can be most virulent, but we never expected all of this to come down at once. They say it'll get easier. I don't know - I really hope they adjust her regimen. She's already lost five pounds and can't afford to lose more. All this chemo for an isolated tumor...?!?!? She's supposed to start Round 2, a five-night stint, next Tuesday!!! How can she possibly...?!?!? We're in good hands, I keep telling myself, but I'm beside myself with worry, anger, fear and despair right now. But I'm not in the hospital - they are. Laura sounds catatonic over the phone. Luckily I've got Griffin to keep me from going insane. I wonder how many wacks over the head with a cast iron pan I'll need to self-administer before I can sleep tonight.

One of us will update tomorrow - let's hope it's Laura and they're home safe and sound.

Backsliding

Today Millie has been running a fever of about 100.5, has had no appetite or energy, and is grumpy beyond belief. I think her platelet count is way down, as her gums are bleeding when I brush her teeth. Mouth sores are common when white blood counts go down as well, which makes chemo patients reluctant to eat. Millie said her teeth hurt, and would not take a bite of dinner.

She dug into her energy reserves at bedtime, however, and gathered just enough to go into a full screaming panic about taking her medicine and getting her injection.

Brian and I (and probably Millie and Griffin too) feel overwhelmed by this chemotherapy schedule in front of us- the effects seem so very brutal to this little girl. And we've only gone through 1 round.

At this point it is only Wednesday, we have a week to go until we go to the hospital next and when they may administer some type of iv nutrition. I can only pray for some more good days between now and then. It seems so bleak today.

A wonderful thing did happen today, however. Arnie and Susan Cohen of the Carousel Fund came by for a supportive visit. They brought some cheery gifts for the children (Susan spent quite some time with Griffin, which was very nice) and a generous gift of financial assistance for us. Their gift will take care of Millie's medical bills for 2009- a looming Kaiser invoice that was hanging over us. Their visit got me out of my doldrums, as I straightened myself up a bit and even brushed my hair. We are so very very grateful to be supported by this amazing Petaluma charity.

Bone Marrow Aspirations

A quick update to let you know that we received the result of the bone marrow aspiration that was performed while Millie was under general anesthesia while her broviac line was inserted.

The bone marrow test was clean of any cancer cells.

Yay!

Millie is getting better and better about taking medicine, accepting her nightly shot, and overseeing the detailed and daily care of her broviac tubes. Here is a picture of her working on "Brovi", her stuffed monkey, with its own broviac line. We stocked her toy doctor's kit with the supplies that we have for her care so she can perform all the same tasks on her monkey as we do with her.

1 Day, 2 Ice Cream Parlours

I had a feeling that today was going to be a good day.
We got the go-ahead yesterday to stop giving Millie Septra, as the doctor suspected that she may be allergic to this antibiotic (she has had an unbearable rash over the days we've given it to her). Sure enough, she did not wake me this morning in agony about the rash.
She woke up hungry. "I want food!" she wailed.

Oh, I could hear the angels singing as I started her off with yoghurt. As her appetite increased throughout the day, she ate some taco salad and eagerly went along as Granny and Grandad invited us to LaLa's Ice Cream Parlour for an afternoon treat. We did a little shopping after that, and she was full of energy- running around with her brother.

I should mention that her leg is not bothering her at all these days (admittedly, however, she has had very little upright time prior to today) and the tumor area is visibly reduced. Last week, her right calf looked quite swollen, like an eggplant, and now looks almost like the left. We were told the tumor would reduce after 1 treatment, but didn't expect this to be visible to the naked eye. (So, please explain why we have 13 more scheduled chemo stays in the hospital?)

Millie was already thinking about dinner on the way home from ice cream. She wanted to go to the Banyan Tree Restaurant- a Thai place that makes her favorite "chicken pops" (satay) and rice. We quickly rushed back out the door to get more food in her. She ate well- probably a cup of food, which is more than she has had in the last 3 days combined. After dinner, the lights of Baskin Robbins beckoned, and the kids got another (small) scoop of ice cream. Griffin chose lemon sorbet. He always chooses the untraditional flavors.

At bedtime tonight, after she had had her nightly injection and had her broviac tubes flushed, and her teeth brushed- she asked for another chicken pop.

I wish I had known this was a possibility- that we would get our Millie back if we just could make it through the days after chemo. I know it is temporary- and she may go back to lethargy if her blood counts go way down, and of course after our next hospital visit- but knowing that we can have some days like today over the next 9 months this journey a little more bearable.

Helping Hands

We are so grateful for the multitude of calls, gifts, and offers of help we receive from our friends and relatives. I have plenty of knitting patterns now to keep me busy (my aunt in Ohio sent over a whole box of yarn!)and Millie has a store of books, games and art materials to get to when she feels better. We are also so appreciative of special help we've gotten for Griffin. He's had some adventerous bike rides and playdates with his friend Dylan and special days with grandparents.

We also have been contacted by the Carousel Fund in Petaluma (our friends Sandy and Stephanie let them know of our situation), with their commitment to help us get us through this time through financial and emotional support. You can learn more about them here- http://carouselfund.org/home.html. Susan Cohen, (who is a teacher at Grant School and remembes Millie from Kindergarten) called me today and was so kind, and told me that they are honored to help us, so that we can just focus on our family and getting our little girl well. The Carousel Fund is a wonderful local non-profit, and a great way to support us and families like us.

We also very much appreciate any of you taking the time to donate blood wherever you are. I never realized how many blood transfusions cancer patients need. Millie will probably need over 10 transfusions over the next year- and there are hundreds of kids like her all over the US that need that donated blood. I will definitely step up my donations, and never ignore another call from our local blood bank.

New Year and a New Way of Life

We're home from our 4 day stay in the hospital. It was pretty tough, but Millie made it through. I had a hard time with the limited sleep, the fold out chair that I slept on, and the constant nurse visits. Millie was being flushed with large amounts of fluids, so I was on constant bedpan duty. It would seem that I was just asleep when I would hear her start to rustle. I would jump to task, but was unfortunately too late on a few occasions and would have to call the nurse in to once again change her sheets.
We had some nice visitors in the hospital, which took some pressure off. Millie was entertained with games and activities that our friend Joel brought (he also brought some chocolate liquors for mama!). She also played several games of "Zingo" with her Uncle Erik and read books and watched movies each night with Tricia.

Now that we're home, the chemotherapy drugs are kicking in strong- and Millie is struggling with the effects. She woke me up at 4:30 this morning saying that she was so thirsty but couldn't drink. I tried to have her suck a washcloth, and I took drops of water and ran them across her mouth, but nothing helped. We just curled up together in bed and waited for morning. Every now and then she would dry heave into the bin we have for her.

The administration of the medication is a challenge- Millie fights tremendously the 3-4 medications she has to take each day. It is heartbreaking to employ "tough love" techniques to get the anti-nausea medicine and other medicines down, but the positive effects are dramatic. She is not eating, but at least she isn't throwing up.

Last night I went to Petaluma Market to try to pick out some higher calorie items that she might eat. There I was, on New Year's Eve, shuffling through the market wearing sweats, UGG boots, and a bulky cardigen sweater- clutching a half gallon of ice cream, eggo waffles, and hershey's syrup. The only thing missing to complete my look would have been several boxes of Meow Mix for the assumed collection of 20 cats.

A home care nurse came over today to make sure we were ok with our more complicated medical procedures. Every night we must administer an injection of GGCF into a pinch of skin on her little body. This is done with an insulin needle, and we have to draw the dose up from the vial to measure it and get rid of air bubbles. (Another case of "tough love".) We also have to flush out her broviac tubes every day and draw blood twice a week. We have 2 large brown shopping bags full of medical supplies and perscriptions for Millie already, and this was just to "tide us over" until we get the big delivery next week! Brian and I are working on an organization plan for our new inhouse pharmacy.

But today, we're just relaxing with a Looney Tunes marathon and trying not to get too ambitious.