Thursday, May 31, 2012

Oh yes indeed!

Lucy's new antic is to nod her head and purse her lips. Sometimes she can get Kate in on it as well and they will nod and purse in unison. I only managed to get Lucy doing it this time though.

Growing like weeds

I finally had some time to weed out some clothes and shoes from the girls' closet and was surprised to find that they are growing out of a lot. I don't know why it surprises me as I can certainly feel the changes in their weights and heights when I hoist them up every day. They are both solidly in-between sizes right now. 2T clothing is starting to be a bit tight and 3T is still just a tad loose. Although I haven't had their feet measured in a while they fit solidly in size 6 shoes but size 7 is probably only a month or so away.

They are growing emotionally as well. Today, for the first time, I was able to leave the room while the girls took ballet. I stayed in the hallway where they couldn't see me but I could peek through the window every now and then to be sure all was well. And it was! When I came in with all the other mamas at the end of class, both girls were beaming and energetic. I actually think they did better without me in there.

The playground is another area where budding independence is making its appearance. They used to stick fairly close together but now that they are familiar with the few playlots that we frequent, they shoot off in opposite directions most of the time. Lucy generally makes a beeline for something high
or spinny-fast
or precarious
while Kate likes to find some secret place to hide
or hang out on a curb and people-watch.
Sometimes, though, I get lucky and they want to play on the same thing...
for 25 seconds...
And then we're off and running again.

Wednesday, May 30, 2012

Memorial Day weekend

We were supposed to spend Memorial Day at our friends' house, Jackie and Meg (their son is Leander), but alas, their twin boys made an early appearance on Thursday. You can hop on over to Jackie's blog if you are interested in reading her birth story...all I can say is ouch! And I can't wait to get my hands on those 2 delicious little bundles for some serious baby snuggles.

Back to our weekend. I surprised the girls with a fabulous Craig's list find...The Learning Tower, which normally retails for $200 but I got for $50! They love it and now help me make smoothies every day as well as small things like washing fruits and veggies.

What's cool is that you can lower the platform as they get taller so it's useable for several years. We will eventually add the art easel.

Friday we headed over to Kelly and M's house for a day of water fun.
 Kelly grilled some sliders for lunch...Kate was waiting with eager anticipation!
 Fun on the trampoline
We ended the afternoon with a little bashing on a princess castle pinata. Nobody was successful in bashing it open which turned out to be just as well since it was filled with candy and I wanted them to nap on the drive home from the 'burbs on the Friday before a 3 day weekend...
Ms. Julie, their Wiggleworms teacher, had a fundraising concert this weekend for her trip to Africa to work with children for 2 weeks. The girls have not seen her for a while and were thrilled to sing and, eventually, get up and dance to her music. When she was done they both ran up to give her a hug. We miss her.
Notice that they are holding hands? They tend to do this when they are in a new, unfamiliar place. Very cute.

Monday we decided to pack up the bike trailer with a picnic and head to the lakefront. We were joined by a few of the families from our Thursday playgroup. Sara, Gustav and Lina arrived right after we did so while Sara and I lounged on blankets under the trees, the guys took the kids to play in the sand.
It was hot enough that Lake Michigan felt refreshing. Our thermometer registered 102 degrees at one point!  None of us prepared enough to bring suits for our bathing beauties though so in they went fully clothed!
After we got them hosed down and sand-free, we let them run around in diapers while their clothes dried on the bikes.

 Kate loved dipping her falafel in the tzatziki sauce.
 Len made the mistake of getting up and lost his seat to Lina and Kate!
Gustav found a comfy spot.

It was a gorgeous day and we were the last to leave around 2:30pm. The girls conked out on the ride home as you saw in yesterday's post.

Tuesday, May 29, 2012

The weekend is over. Sigh.

Me: It's a nice day today! Let's go to the park.

Kate: It's not a nice day because Daddy had to work.
Hoping to get some pictures up soon of our weekend antics. Lucy had her first experience playing in Lake Michigan!  In the meantime, here's a peek at how our holiday ended.

Friday, May 25, 2012

Triple Threat

Since my diagnosis I've, naturally, been reading (thus far only positive) books on the subject. One of them is Crazy Sexy Cancer Tips by Kris Carr. I had actually seen an Oprah show with her years ago so when cancer started to be part of my personal vernacular, I remembered her story and sought out her books. One of the chapters in this particular book is entitled, Go Ahead--Use the Cancer Card. This card comes with some perks including swiping it for the following reasons:

No I can't do the dishes. I have cancer.

I need to rest. I have cancer.

I regret to inform you that due to cancer, I will not be able to attend your "fill in the blank of whatever you don't want to attend".

Unfortunately, when dealing with loads of phone calls to cancer hospitals, pulling out your cancer card is, well, not so effective. That's when I realized that I have two more cards in my arsenal...

The Infertility Card
The Adoption Card

And boy, those two worked magic today.

Me: I'd like to have my slides sent to Sloan-Kettering for a 2nd opinion.

Rather brusque woman at NW who is the keeper of slides henceforth known as Matilda: Your slides have already been sent to MD Anderson.

Me (not understanding that they send originals--I mean, I JUST found out I have cancer and now I'm expected to know how this process works?!): Oh, ok. So how would I get Sloan-Kettering to review my slides? 

Matilda: You will need to call back to see if they have been returned.

Me: Is there a time-frame for that? I don't really want to call you every day...

Matilda: I don't know how long they may keep them. It could be today, it could be weeks from now. I don't have the time to keep up with everyone's file on a personal basis so I'm... blather, blather, blather, I'm not paid enough to keep track of these things....yada yada.

We go back and forth a few more rounds, getting nowhere so...

Me (whipping out my Adoption AND Infertility cards--this is no time to be frugal): I'm sorry but I was just diagnosed and I'm feeling a bit overwhelmed. I have 2 two-year olds, one of them I finally was able to have after YEARS of infertility and then we just got back from China with her orphaned sister who had a cleft lip and palate. I just have so much on my plate right now and my priority is trying to just stay alive so that my children won't be left motherless, especially Lucy since she has already lost one mother in her short life....

Matilda: OH HONEY! 

Lengthy discussion about how pathology slides are prepped and sent, what the steps are, how long that will normally take, etc. etc.

Let me just pull up your file here real quick...yes, I see that MD Anderson has actually just requested more slides and these are to be unstained with new tumor samples. That means they are being prepped now but probably won't go out, because of the holiday, until Tuesday. 

Me: Oh. That long? 

Insert well-timed out-burst by Lucy beckoning for my attention, and me, sotto-voiced, telling her that "Mama is on a very important phone call; can you please wait just a little bit longer and then I'll give you something to eat". 

Heh heh.

Matilda: Let me see what I can do for you. Oh yes, the slides are actually ready to go. I'll be sure they get out in today's mail and they should be there by Tuesday. My name is __________ and you can call me back by the end of next week to get a status update. Do you have any other questions that I can help you with?

Me: No, I think you covered everything that I can think of. Thank you so much for all of your help and insight in navigating this process...it's a bit overwhelming to say the least!

Matilda: I understand, now you just go love on those babies and give that poor orphan child some food!

Plane flight, hotel, taxis in Houston and NYC for 2nd opinion visits: $2,500.

Groceries for new, improved, mostly vegetarian diet to improve health: $200/week.

Use of Adoption and Infertility cards to speed up paperwork: Priceless.

Thursday, May 24, 2012

Should I be flattered...or concerned?

I received notice yesterday that I got into MD Anderson's sarcoma hospital in Houston. My appointment is Wednesday, June 20. Len and my mom will hold down the fort here with the girls while I go to Houston for a few days. They ask that I stay 5-7 working days after my appointment in case they need further testing but I'll need to head back by Saturday as my mom will be leaving shortly after that. I'm planning to take a digital recorder with me so that Len and my mom will be able to hear the consultation when I get home.

But the better news is that I am meeting with Dr. Raphael Pollock. I just called up and asked to see the person responsible for writing the article that my friend Paivi had sent to me. That's when my Patient Access Specialist told me that he no longer sees new patients, especially if they haven't been specifically referred to him via their oncologist. So I sent all my information anyway, including my slides and MRI scans, and now I'm in!

I'm not sure whether I should be elated that I got in with someone who has studied desmoid tumors for a living and is interested in "the development of novel therapeutics for this disease" or if I should be worried that my case was bad enough for him to take me on as a patient.


Wednesday, May 23, 2012

Another one bites the dust

Sigh. Another sitter down. You might remember that just recently we lost a sitter but were lucky enough that I had been interviewing and Marissa could start immediately. Things went along well for a short time and then, well, things fell apart. First there was this...
Yes, that is our huge sisal rug with every color of playdoh that we own smashed into it. This is what is left after trying to pick it out. Since Monday.

So I got home on Monday and we're chatting about how the morning had gone and suddenly I look in the living room and see the rug. She said, "Oh yeah. Sorry about that. We were doing art on the table and some of it spilled on the rug. We got up some of it."

So there was a discussion about art, 2 year olds, rug, PLAY DOH, and why the hell did it not occur to you to either A. leave the table where it was on the wood floor or B. move it into the kitchen?

So yesterday I was gone again for another cancer consult from 9am-1:30pm. I come home to find Kate's diaper so full that she has soaked through her pants and onto the sofa. I asked Marissa why Kate was so wet. "I was putting Lucy down for a nap and didn't get to Kate yet." In my head I'm thinking, This wet diaper has been going on longer than it takes to put Lucy down.

So, she leaves. Lucy wakes up after only about 25 minutes of napping. I go in to find her windows wide open, no sound machine on (which were in the instructions I left for how to put Lucy down), and she is soaked through her pants and onto the sheets of her bed. A diaper change also reveals a poop. Never, in the 7+ months that we've had Lucy, has she ever pooped in her sleep nor has she soaked a diaper enough to wet her pants. This means that she wasn't changed before naptime either.

So I called Marissa today and asked her how many diaper changes she had done for them and she said, "Oh, I guess I just didn't think about checking them."  Seriously? They had been to the park and had not only had water there but had also had drinks with their lunch. So I told her that diaper changing a non-potty trained 2 year old is Babysitting 101 and she would need to find other work.

So now you're probably thinking that she's just young, a college student or even a high school sitter, right? NO. She was born in 1969. She's only 3 years younger than I am.

Finding childcare sucks. Finding responsible, nurturing, capable childcare seems impossible.

Nana to the rescue. She arrives soon and will be here for 3 weeks to cover all of my oncology appointments and Lucy's speech therapy. And to help me interview sitters...again.

Monday, May 21, 2012

Kite Festival!

Saturday was just a glorious day for a kite festival! We walked over to Montrose Harbor and met up with Sara, Gustav and Lina.
 Did you notice that Lucy prefers the Caucasian baby with blue eyes while Kate prefers the Asian baby? I think it's quite cute and probably is because that is what they see every day. I mean, they look in the mirror sometimes but most of the time they are looking at each other.
We spent a lovely afternoon trying to fly a kite, eating lunch and snacks and generally just enjoying a great Chicago day.
Lina was great about sharing her veggie stix.
Christy, Fernando and "other" Lucy happened by and joined us for a while. Christy and her daughter are in my Thursday mama/play group.

A great time was had by all and the girls conked out on the stroller ride home so both took naps (yay!). Thanks Meme and Papa for the cute matching dresses!

On another note, I took a chance and gave the girls a quinoa stir-fry that I had made for Len and me tonight so we could all eat together. Amazingly, the girls loved it! The only bit of problem they had was that the veggies were not cooked into soft submission so the pieces had to be smaller than normal in order for them to manage all the chewing required to swallow it. All in all though, a success.

This is Lucy saying "CHEESE!"
Kate had a mouthful of kale in this shot...
Leftovers for tomorrow's lunch...yum!
If you are interested, here's the recipe:

Cook 1 cup of quinoa and set aside. Meanwhile, add 2 TB of olive oil to hot pan. Add 1/2 tsp mustard seeds and 1 tsp of whole cumin seeds to hot oil. Saute until seeds pop. Add a chopped onion and saute until onions soften. Add kale, chopped carrots, broccoli, cauliflower (really, whatever veggies you fancy--this is just what I put in tonight) and some water. Saute 3-5 minutes until veggies are tender but still a bit crisp. Turn off heat and add 2 tsp sesame oil, a few sprinkles of wheat-free tamari (or soy sauce if you prefer), and a handful of raisins. Stir. Add cooked quinoa and stir. Serve. I also added slivered almonds to the adult plates.

You can always add whatever meat you want as well (just add it first, after the onions but before the rest of the veggies) but the quinoa is a high protein grain so I left it out.


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