Tuesday, April 29, 2008

the window

The children's rooms at CHOP all have large windows along one side, overlooking the central atrium, outside or, if you're very lucky like us, the emergency room. It spawns a lot of thought that I hope I'll write about...For many, especially in the oncology ward where long stays are standard, window decorating is big. I wouldn't say ours is an artistic triumph, but is organically growing, and Marian heartily approves.
Audrey's panel is on the left. She's getting quite adept at backwards writing.
The center is mine, I guess. Our What a Wonderful World silk scarf and Mare's name.
I'm documenting the making of the right panel below. Coffee filter watercolor flowers and painted-by-Marian vinyl window clings. Both new-to-us projects that you should try, too.
Art therapist Jennifer introduced us to coffee filter flowers. I think they might be a hospital standard, since we know another charming 6-year-old getting a bone marrow transplant in Minnesota who wrote about them on her Caring Bridge site. I know I've seen coffee filters in craft applications before, but I've never indulged, probably since I'm not a coffee drinker, so they weren't handy. I thought their allure was "hey, here's a round circle of white paper that you already have". But more impressive is their durability when wet, awesome for wet painting with young 'uns (look at how wet this paper is!), and (I know, surprising) filter quality: color travels on them in cool ways, even separating into its components. A very tie-dye effect. Materials:

Washable surface. Your painting turns out two-sided, which is awesome for windows, but also means bleed on the bottom. So make sure you can easily clean what you're working on. A paper towel or another filter underneath works, too (plus, cool effects).

Coffee filters. The grande size is great, if you can find it, but everything works. Since they have distinct ridges, crumpling up the filter first helps you to flatten it out before you start. Just go ahead and embrace it, like nice crumply linen pants :)

Watercolor paints. I have to admit this project was twice as cool because Jen brought us amazing metallic watercolors. They cover everything with great bitty mica-like bits of sparkle and I cannot believe I, with an eye out for all things new and kids'-art-related, didn't find them myself. One (there aren't many) upside of being in sterile isolation is that everything has to be new. So the watercolors are now ours!!! Prang brand metallic watercolors. You must find them.

Brushes & water. Oooo, guess why? Bigger brushes are better because you want to splash on a lot of color.

Process: Use plenty of water to work up a generous amount of paint, and let the colors run together.

another option: washable markers.
The same water base that makes them wash up nicely also makes water a great solvent for these markers. I think this is a good technique for children whom you don't really trust with paint, but want to give them a chance to play with color--call it pre-painting :). Draw a line design or just scribble, then use a big brush to spread water around. Once you get the filter paper wet, the color will slowly spread by itself. Or brush vigorously (I love that word), and accelerate the process.

If you were holding these in your hands, you would get to enjoy all of the good shimmer :).

Seriously, get yourself some Prang metallic watercolors. Who loved this project most of all? My mom and I. Giddy.

Plenty long, this post. So vinyl clings later.

Day 6

Yesterday found Marian vomiting and sleeping. I just watched her & changed her when necessary.

Finally the 3rd anti-nausea medicine worked, because the long sleep (4:30-9:30, with a couple of brief awakenings) wasn't interrupted with necessary bed cleanings. She lost nearly half a kilo yesterday, and is on more fluids today to try to catch up. We've switched to total parenteral feeding (IV) to give her torn up gut a rest. She's also getting a rest from one of her antibiotics and her cyclosporin because her kidney-related blood tests are rising. Still urinating, though, so that's good, and her hemoglobin levels have risen a bit, so no need for transfusions yet.

Today she was alert enough to open a whole stack of mail: 30 letters, 6 big envelopes, 2 boxes. THANK YOU! And people already come in and say "Wow, you have a lot of friends!" It will take me all day to get these taped up :). We love it.

Now, 5 pm, she's been sleeping for a little more than an hour and enjoyed school and art therapy and even a little computer play (by request) before she asked for nausea medicine and promptly fell asleep.

Sunday, April 27, 2008

something sweet I got out of bed to add...

When I got back from my sleepover with Audrey & Mom around 10:30 this morning, Marian was resting in bed and I was missing my girl. I immediately (well, after handwashing, of course) draped myself across the bed and snuggled up, resting my face against her shoulder. She wrapped her other little arm (the tube-free one) around me and we said the nice "I missed you" things, and then I asked, "Tell me a story." She hadn't been feeling very active, and frankly didn't look that hot, so imagine my delight when she complied, launching into a fairly long narrative about my favorite animal: "Once upon a time, there was a little hedgie who lived in a safe barn..." The story continued, seeing the brave rescue of baby hedgie from the forest by his "brave Dad Hedge", who killed 7 scary bears with "just one claw" to bring his baby hedgie safe back to their barn. I got delicious details, like "his prickles were soft and nice to pet, not owie pokie ones". I'll be pulling for her to write & illustrate it in one of the little sewn booklets that I had my mom make for us just before we left. If I'm successful, you may be so lucky as to see it soon...

Day 4

Audrey, Nathan, and Grandma Donna were here this weekend and it was lovely to be together. The logistics of lots of people feeling good in a little room and Marian feeling good about Mama leaving are a bit tricky to manage, but worth it. We need each other.

Yeah, so still no photos. New computer, new camera, new software=very slow editing while I keep forgetting the right tabs and prompts. Plus, dumb new Windows Vista (I don't know if the clever Mac commercials are right about the problems, but I don't like it because I'm just more familiar with good ol' W98).

Marian is getting sicker. Expected, but still sad. Today when I got back after having a sleepover with Audrey & my mom at the Ronald McDonald house ("the house that love built"--seriously. I am so moved my each of my stays there), she had dark circles under her eyes. Nausea started a couple of days ago, but she had her first vomiting today. The liquid bowels continue, but, intestinal drama being "our thing," we are not easily impressed (okay, I still am). Marian is, of course, a tough little chica, and we had giggling and cheerful chatter now and then, but her stamina is slowly decreasing. More napping, less sitting up in bed, and shorter fun periods. She did a bit in a Bible activity book with Grandma while the rest of us slipped out to attend church together, but that was it for her activities today besides Webkinz with her sister. She was delighted to play Webkinz remotely when Audrey got home (each on their own computer & talking on the phone), but 15 minutes was plenty.

As Marian's cell counts drop, her body is less able to do its repair and energy work, while the effects of the chemotherapy continue. I understand that the worst time is when her new cells start to grow & wholeheartedly dive into the work that had been neglected by her mini-to-gone-immune system in the past few weeks. All sorts of inflammatory work going on. Planned pain, I suppose, but the most difficult part. We hope, now, besides for the new cells to grow & thrive, to avoid (1) introduced infection and (2) graft vs. host disease--GVHD--, the battle between sisters' systems. Our risk of that is minimal with a sibling donor, but some skin problems at least are likely. Sigh.

I love being with her here, though (stressed when I'm gone, though I do treasure the time with Audrey while Nathan sleeps over), and am glad for our friendship. Plus, we're well into Little House in the Big Woods and I missed those books :).

Friday, April 25, 2008

Day 2

After a very tired morning, Marian was good and goofy this afternoon. It was a mood probably aided by a little trip on her anti-nausea meds, but she was delightful even before that. Physical therapy, art therapy, crafting with new package from Janet, thrilled to pieces with Aunt Mindy's joke quilt (not to mention Uncle Jason's promise if she was brave), and lots of good silly cuddling.

Her counts keep falling, which is expected/deliberately planned (!), but still a little weird to see. I admit I'm unsure of the units (and the nurse couldn't enlighten me), but I think these are
thousands. I thought a little "normal CBC" google search would clear it all up, but no. Lots of different units out there. I'll ask during rounds.

WBC: 1.2
RBC: 8.1 (transfusion tomorrow)
platelets: 241

She misses her daddy something fierce.

Thursday, April 24, 2008

Day 1

I have had this window up for an hour, waiting to want to write, but I think this whole process overwhelms me enough that finding words, particularly condensed words, seems like an unbearable process. And, honestly, more of a plain dull process than a painful & emotionally wrenching one. Perhaps that I've talked it into dullness, more likely that living it is so intense that writing it again seems to be decided overkill. I hope I change my mind because I know I'll regret not having my own record, but for now....oh man was I excited to check my e-mail and see that my champion of a mother, Donna, just wrote a sweet e-mail to my extended family that can cover yesterday in the interim. And this photo: Marian sleeping through the oh-so-understated-drama. You can see the stem cell bag, sideways, between the clear IV bag on the right and the brown-covered-against-light-damaged cyclosporin on the left.

Dear Family,

Yesterday was transplant day and I know many of you are anxious for a report. Things went very well. Audrey went in at 1:00 pm for the bone marrow harvest. They gave her general anesthetic and went in with big tough needles into her hip bones to extract the marrow. They got about 250 ml of great marrow. The doctor said that it was especially rich and that Audrey's bones were especially tough. Sweet Audrey was so brave. She did great. Today she is still a little pale and her hips hurt, but she is not complaining. Because the girls have different blood types, (everything else was a perfect match) they had to "wash" the red blood cells out, leaving about 70 ml of bone marrow. They brought it in a little bag to Marian's room and hooked it up to the IV at about 10:00 pm. It was cool to watch that precious pink liquid drip into Marian's veins with the promise of so much goodness. Marian slept through the procedure. They give them tylenol and benedryl as preventitives and those just relaxed her into slumber. It only took about 45 minutes to drip in, and even though it didn't seem like a big "to do" it was quite thrilling to watch. The whole thing was tolerated very well. Today, Marian was feeling a little tired, but mostly great. The doctors said it takes about 2 weeks for the bone marrow to graft in and start producing. This is a crucial time to keep Marian from infection as her blood cell counts are way down to accept the bone marrow, so they aren't able to fight infection as well. They told us that Marian would probably experience some ups and downs with how she felt and as she waits for the new bone marrow to start producing. I guess side effects are varied and different for each child. Marian has the benefit of having a perfect match sibling donor and also of having realitively healthy marrow to begin with. Some things that can occur are loss of hair and mouth sores and digestive problems, but they have things to help. I was very impressed with all the hospital staff-- doctors, nurses, physical therapists, teacher, recess lady, cleaning people, everyone was so thorough and dedicated to doing everything right. Valerie and Nathan are champions. They are so patient and good with their girls. So, we are thrilled that transplant day went so well and are praying for everything to go just right with these next few weeks. Thanks for your prayers and concern. We felt the support and love and it really helps. Love, Mom/Donna

Hope she doesn't mind. I want to add this detail: the processed marrow looked just like raspberry lemonade.

Wednesday, April 23, 2008

My first transplant day

(Marian deciding between her favorite stitchette in each seasonal group while working on a special picture for her sister celebrating their donor day.)
A big yellow poster boasting those words is on Marian's door right now. She made it in art therapy with the lovely Jen yesterday. Audrey's harvest got bumped to 1 pm, so our sweet little cells haven't yet been delivered (since the girls are different blood types, A's red blood cells have to be washed out), but we expect them around 10 pm. Audrey was a trooper, and the girls so darling in their love and dedication today, but she sure feels lousy now. Her bones are sore, but she's primarily suffering from the anaesthesia right now. I'm thinking that she'll have a very welcome sleep tonight. She's working on it at the Ronald McDonald House with Nathan right now. The doctor said her marrow was very cell rich, and her bones rock hard. "Does she drink a lot of milk?" Why yes, still lives on the stuff!

My mom is hanging with us--we're all working on our Wee Wonderfuls stitchette embroideries. Marian is doing the peppermint fairy's penguin pal, Grandma Donna the acorn fairy's owl buddy, and I'm stitching a blue dress on Georgia Grows, in honor of blue day (our friend Shannon said there was so much blue at the girls' school today ("wear your superstar shirts or something blue today") that she felt like she was in the ocean). Thank you, Hillary! (Marian received a care package from the crafting rock star herself that we still haven't posted on...).

More when there is more to tell!
Valerie asked me to share a sweet experience I had yesterday as I picked Audrey up from school. It was the last school day she had before the bone marrow transplant. and when I met her at her classroom, she was carrying a large tote bag full of gifts that the students and teachers had given her, wishing her good luck. Everyone in her class and all the teachers in the school had signed the canvas bag with colorful markers and inside was a large assortment of pens, pencils, markers, and notebooks, along with a little folding desk--the perfect gifts for Audrey who is a wonderful writer. As we made our way down the hall, everyone called out to Audrey, wishing her luck and sending their love. I was so touched by the outpouring of love and support for a sweet big sister who is donating her bone marrow this morning.
Another precious thing was watching Marian tell Audrey about the surgical procedures she was going to be having and encouraging her. Marian was so sad she couldn't go with Audrey and hold her hand. They are the sweetest, most loving sisters.

Tuesday, April 22, 2008


Tomorrow is my transplant day, 4/23/08. I'm gonna make a new big poster and I'm gonna watercolor it. On my transplant day! And I'm gonna be in the same room like now on my transplant day! My sister is my donor and that means part of her bone marrow is gonna go inside my body and the bone marrow is if you have seen a dog chewing on a bone and you see the red stuff inside the bone and the red stuff is the bone marrow. My sister's gonna come tonight and her harvest is gonna be early in the morning to get just part of her bone marrow. Enough bone marrow inside her body for her to live still.

If you have a superstar shirt, wear that on the transplant day. If you don't have a superstar shirt, at least wear a blue shirt. Bye, bye! See you later!

surgery yesterday

I got a PICC line yesterday, 4/21. A PICC line is a tube going inside you and you have a bandage on it. That tube goes into a big vein. It starts to your arm and it goes to your body. It's the vein that's inside your arm and there's lots of veins connected to it, little veins of course, and then it goes to your heart. My Broviac got taken out and it got taken out 'cause it had an infection and if you are wondering when it got put in, my mom will tell you right now. [Tuesday, 4/15--stinkin' thing didn't last long!] At my surgery, nurses were nice. When they gived me the medicine out in the hall and they put me in the surgery room I got dizzy 'cause they give me the sleepy medicine.

Monday, April 21, 2008

using the it-could-be-worse trick

It's a favorite little mental game of mine. Certainly it helped me feel better in the light of day. The dark of last night and the midnight surgeon (residents, I'm sure) visits left me heartsick and using tissues in the parent's lounge. This photo is really a good summary of our day. Calm and good in many ways: phone calls from darling friends, quiet crafting and stories, and the first food Marian was interested in eating since we arrived (potato chips and ketchup, of course!). She was feeling good enough to be this goofy...but you may also notice her sweet hand carefully held to her central line. It was sore for longer than it should have been, and, sure enough, is infected. The discharge-and-redness signs finally showed up last night, and she's on antibiotics to slow it, but the line has to come out tomorrow morning. They'll place a PICC line during the same anaesthesia, and that should suffice to keep the transplant on course while what next? is decided. We had a may-or-may-not be related blood infection on Thursday that reared its very ugly head with rigors and cyanosis (that's shaking like a leaf and turning blue in the lips and fingers for you lucky non-medical folks) and broke my heart right in two. The shaking preceeded a fever that was caught by antibiotics and Tylenol, and only lasted an hour or so. We did find out that (1) they respond quickly if it's an emergency, (2) 20 people fit in one small room, and (3) their swish-boom arrival doesn't scare Marian. Sweet soul. I was trying to soothe her and she worriedly told me, "I trying to settle down, Mom, but I just can't!" Wanted to make sure I knew she was "good". Oh, very, my dear.

The sweetest thing


I like beading. I make cool stuff. I made a microscope. I made slides that go with the microscope. I made one slide with a poopie slide, one slide was a wet slide, one slide was a blood slide, and that's what the scientists need to look at to make sure you don't have any germs in your poop, wet, and blood. And I made a stethoscope, and I made a formula bag (formula is what I eat), and I made a bottle of pills and a shot, and I made tubing for a blood test. And I made a bottle half full of blood and a pill bottle I talked about. The medicines that I made were I made two little pills of endocort, I made synthroid that I take. Two hours after my feeding my mom gives me my synthroid. And I also made another blue pill that was light blue, not dark blue, and I made two green pills. And I'm making another pill bottle and I will show you all the pictures when we are done. Bye-bye for now!

t-shirt orders

I'm placing the last-for-awhile T-shirt order on Wednesday. E-mail me with special requests or questions: three_goats@yahoo.com.

Pre-ordered shirts will arrive in about 3 weeks: 2 week turnaround at the online shop I order from, and a week of shipping.

Wednesday, April 16, 2008

thank you, NBC 10

for posting Marian's segment online. You can see the video story on our "Little Superstar" right here!

We might even get to watch it tonight if the hospital wireless suddenly has a warp speed moment... (edit: it was really slow, but we watched anyway, and loved it!)

Tuesday, April 15, 2008

and so it begins

Marian's having a bit of a nap now, recovering from surgery to place a double lumen Broviac catheter (as she explains it, "it's 2 tubes that go to my heart and now no more pokes!") and a very late night in the ER. We were scheduled to come in this morning and start our BMT adventure with the surgery, but crazy intestine action this weekend had the powers that be concerned that she was dehydrated, not really the way to start before fasting for surgery. So Nathan finished up taxes and I finished up all the unnecessary packing that made me feel better and we rushed out to Philly. Except it all took us forever and we didn't get here until midnight :). Into the room by 4:00 am, though, which actually exceeded my expectations. We've been coping via games this visit, with Settlers of Catan in the ER and Nertz (a card game) in the surgery waiting room. I was giddy with lack of sleep and panic, but have been able to keep it silly instead of sobbingly so. Such a fine line :). I think the worst part of being at the hospital, other than the REASON, is all of the sad parents. The waiting room vista is seriously sobering, and slipping through the ER to our triage room (our doctor arranged for us to skip the soaking in germs part) almost brought me to tears (granted, a rather easy feat). Luckily, our room overlooks the ER because, for some reason, the ER waiting lounge has a 9-story vaulted ceiling for our viewing enjoyment.

But we are safely settled and the princess is resting well. So far we've only dipped into the Legos in her treasure bins, but great things are in store! Thanks for checking in with us.

Friday, April 11, 2008


This is me pinning the pattern pieces to the fabric. I did the pattern and my mom sewed it on her machine.
I'm embroidering the mouth and after I 'broidered the mouth I did dots for the nose. It looked like a pig but I didn't worry about it. And the eyes are safety eyes.
Here I am pouring bullets in my bunny. And those are my two favorite animals, named Pony and Lambie. They have pellets, so I wanted pellets for my bunny, to make it stand up. And to make it feel like Lambie and Pony.
Here I am stuffing my bunny. My bunny looks cute so far. I like it. I like it! I like it a lot. Oh, yes, I DO-OO!
Here I am sewing my bunny. We wanted that blurry picture there 'cause it could show that I was really tight-ing that thing and that I was doing it FA-AST!

[It is very important to Marian to have a favorite stuffie to sleep with, but the doctors will only let her have cloth items if they can be washed every day. We launder Lambie and Pony often, but thought it might work well to have a larger rotation through the laundry so I'm not washing clothes daily. Audrey also made her an awesome little dolphin with Grandma Donna while we were in the hospital last week. Hopefully she'll share it soon.]

it's a date

If you live in the Philly area, watch NBC channel 10 at 2:00 pm on Monday: Marian will be on TV!

There are hopes of having the segment available on their website. If so, I'll let you know right away :).

Wednesday, April 9, 2008

I'm gonna be on TV

Here I'm practicing the fairy for the TV interview. And they wanted to talk to me about my bone marrow transplant and why I'm getting it and other sorts of things like that and I showed them the T-shirts and I showed them how to make a craft that's a fairy. I liked it.
Here's this funny picture. I was trying to get away 'cause I didn't want any pictures and I was done with the pictures, you know! And I didn't want any pictures any more. And you can see the camera man and the TV lady trying to get a picture with me. It's for the 10! show.
[everyone there, the camera man, host Lori Wilson, and intern Lisa Reindl who "found" us--she's friends with our immunologist and saw him wearing a superstar tee--were so kind and great to work with. They got Marian to talk cheerfully for an hour and a half until she was just plain worn out. She announced "And now I'm done." And she really was! It will air soon, after editing & all & I'll let you know if it's viewable. ]

more crafts I did in the hospital

My friend Ella gave me some glow-in-the-dark fairies that I could have in the hospital and we made stuff for the glow-in-the-dark fairies. For the beading we use skinny wires to make different stuff and you put on tiny glass beads, and then you make it into something new! We made wands for them. We made a butterfly for them. We made a mama snake and a baby snake for them. I had a new IV so they put it up on my arm so could still use my hand and I liked how they did that. When I go back I'm not going to have an IV. I'm gonna have this tube connecting to my heart and out of my body there's going to be two tubes hanging out but the one that's connected to my heart is just one tube. And it's called a Broviac. And that will be nice because I will be able to use my hands for CRA-AFTS!!
I got some supplies from the TV lady. And I got instruction paper [construction!]. I got foamie stickers, I got Blendy markers. The play lady made a beach for me and I made a machine. And I made that bunny all by myself, with a tiny bit help. I will post the pictures about that later.
My IV was kind of hurting this day so I used my foot to hold the paper. And I have a tricky foot, you see! And the foot helped me cut. Bye bye! See you later!

And I have Vanderbilt scrubs on. I got my Vanderbilt scrubs from my dad 'cause he comed back from Vanderbilt. That's where I used to go to the hospital.

crafts I did in the hospital

I was talking on the phone with my sister and it made me really happy 'cause look at that giant smile. And here I am working on my Zelda and Ivy paper dolls [mom's post on paper dolls, including a link here], and I drew food trays for them. And you can see the coloring book that Elmo gave me. He gave me a coloring book because he saw that I liked drawing because I was drawing that time and so he gave me a coloring book. I like Elmo!
I'm drawing a house for my paper dolls Zelda and Ivy! I like Ivy. Ivy is the little sister like me. I made a stone roof. I made a stone chimney. And I made ivy all around the house.
And I drawed a picture of a fridge--a little fridge--and I made a remote and I made a shot. I made a microwave. I made a bottle of synthroid [one of Marian's medications]. I made a feeding tube. I made a bottle of formula. I made a bottle of water. I made a pill. And there's the bottle of methotrexate. And methotrexate is a kind of shot. And I made the tubing for the blood tests, and I made the two bottles. One of them are filled with blood. The other one is half full filled of blood. I like drawing. And these are for Zelda and Ivy when they get to the hospital. Bye-bye! See you later!

The hospital

Here is the Children's Hospital at Philadelphia. Everyone there is an expert. They are very careful. Why are they very careful? 'Cause they don't want the children to get nervous and the children to get hurt. It was good getting blood tests there than the other hospitals because a guy there took a blood test on me and when he poked the needle in it didn't hurt at all. At other hospitals, it's usually like they hurt a lot, but this hospital is very careful. When I got the second IV, the girl didn't look as smart; she looked like she couldn't do it, but POP! she could do it! I told her: "Oh thank you oh thank you oh thank you oh thank you thank you thank you. You are an expert!" My nurses were nice and they were good and they were careful and they were how they were supposed to be.
And this is a picture of me sleeping in the hospital after my first chemo treatment. All of my tubes are: I had stickers on my chest and a sticker on my tummy, and I had an IV (this is my first IV I had), and I had a blood pressure cuff on my leg and I had an oxygen monitor on my toe. And I had a feeding tube hanging from my belly and it makes me hard going to the bathroom.
Mostly I liked to watch TV. And we watched Animal Planet and we learned about a hippopotamus that lived with a family and they made a door that a hippopotamus couldn't open because if she opened the door she would sit on the bed and break it. And we also watched cooking shows 'cause I like cooking with my mom and I like going grocery shopping, even if I'm not a real eater. It will help me eat later. Of course. Bye-bye!

And ELMO! came to see me. And that was the first time I even met Elmo. I like Elmo.

Thursday, April 3, 2008

a quick note from dad

Marian wants all her friends to know that even though she doesn't have very good computer access right now (thanks to Make-A-Wish, this will be remedied on her next, longer visit...more on this later I'm sure) that she's very thankful for all the good wishes and that right now she's doing fine.

Hospital life is sometimes exciting (Elmo visiting) but mostly boring (which is a good thing--drama in the hospital is undesirable).

Anyway, keep wearing your awesome superstar shirts (because you look awesome in them), send your pictures of you wearing them to three_goats@yahoo.com (or marian.grace@yahoo.com), and keeping thinking positive thoughts.

Marian will be home on Saturday and will update personally then.