Changing it up...

Well Miss Chloe is a worry wart for sure! We talked with her last night and she asked if we could have the surgery sooner... I told her I'd check and now we are scheduled for Wednesday, March 4th for surgery!!! So we're moving it up a few weeks. I think it will be best for all of us, so we can move forward into recovery sooner and have 2 fewer weeks of emotional build up!

RELIEF!!! R-E-L-I-E-F!!!!

It's time to celebrate.... Kent had balloons and roses (for our little "Rosebud") waiting for her when she got home! This is a picture of her this morning- excited to be done with yesterday (and to have good news). Well at least the best news we could have!

I don't know how to explain the emotions that we have all been going through these past 7 days... and those all compounded yesterday as we put Chloe through all the tests (the worst part was the IV- she is horribly afraid of the poke and the needles)! The good news now is that we know that we are dealing with an A-Typical Osteochondroma- NO CANCER!!! They had us pretty worried... first they get us in 2 days after Dr. Walters (our pediatrician) sends us to Children's, then they rush a CT, then they call us firs thing Saturday with "A-typical results"... fit us into the schedule on Tuesday with an MRI AND a bone scan... and finally they wouldn't take her IV out after the MRI because they thought they might have to run some more tests... (talk about instilling fear- yet they were wonderful and supportive every step of the way- just still makes you fearful when they rush so much, although the urgency was very much appreciated -we were not looking forward to anymore waiting)... then they put us in a room and the doctor's personal nurse comes in to check on how our day was (all I could think was "get out... I don't want you here... I don't want you to nod and smile and tell us you know its been a long day, as if you are preparing me for an even longer night")... then she says she's going to go and "rally the troops"... (once again... DAMN... double DAMN... don't rally the troops, just send someone in here to tell me everything is o.k.)... both Dr. Conrad (the lead doc) and Dr. Scharschmidt (the fellow- which by the way, you say his last name- we've mastered it, but when you say it fast it sounds like a bad name- LOL!)... and they instantly tell us the GOOD NEWS and it is quickly followed by the BAD news (according to Chloe), but still RELIEF came over my mom, myself and Chloe. We all started to breathe easier. Dr. Conrad was there for just a moment to explain the final diagnosis and then Dr. Scharschmidt showed us all of her tests and explained what they were all used for and how they came to this diagnosis and how they are confident this is nothing more than an osteochondroma just growing an unusual direction. After he was done, the personal nurse Amy came in again to finally take out Chloe's IV, to give us surgery instructions, and then she personally walked us down to the surgical scheduling desk. They were so nice there too! Finally after waking up at 5 am to get to our appointments that started at 8:30 we were done- 4:35 we were in the car and buckled, ready to move on!

The scary part for my sweet little Chloe is that we still have to have surgery. We had the choice of before (March 4th) her birthday (March 11th) or after (March 18th) and she chose after! They want her to have this removed within the next 3-6 mo., but its not emergent. I wanted to have Dr. Scharschmidt on the surgery since he was the doc that really was personable, and has walked us through all of it from the beginning to the end. She wants to have her birthday party while she can still move around normal, all by herself! It was really her choice! I was hoping for sooner, so that she wouldn't worry every day about the needles and the surgery and what she'll be like afterwards with recovery.... (because she is turning out to be a HUGE worrier)- but March 18th it is.

The surgery will require us to stay 2-3 nights in the hospital. (The cool part too, is that Melissa and Chris will be at the hospital March 19th night for his sleep study- so we'll be able to support each other AND our other two will have each other with Nonny!!). The surgery will last 2-4 hours (depending on how hard it is to get to her tumor) because her tumor is behind all of her nerves and tendons in the back of her thigh and they don't want to create any damage to those! The good news is that though the tumor is close to the growth plate, it is not dangerously close, so they can operate without the fear of stunting further bone growth to her femur! For the surgery, Kent and I will both go and stay with her (Blake will be with my mom I'm sure), and Chloe is ecstatic that Daddy will be there this time too!!!

She will have 4-8 weeks of recovery, just depending on her! We'll have some physical therapy to do to speed the movement along as well, and she'll get crutches (or a walker or a wheelchair if she doesn't like the crutches). The way her surgery falls on the school calendar she will only miss 1 week of school (the first week after her surgery) and then it will be Conferences followed by Spring Break, so she'll essentially get 2 1/2 weeks of recovery without missing more than a week of school, then she'll still be on crutches for maybe a week or 2 at most after that, while she's back at school. We figure by the time we get to summer she'll be better than normal!!!

Thanks to everyone who has been there for me, for Kent, for Chloe, for Blake... thanks for the cards, the pictures, the toys, the stuffed animals, the flowers, the balloons, the treats... we are so very loved and we feel that! We have such dear friends and family surrounding us- we could make it through anything!! We hope to be there for all of you when you need us!!

Stay tuned for March 18th! Now we'll hurry up and wait (but we're going to have a stellar 8th birthday party in between).

By the way, Chloe wants to do a photo journal of her experiences (and she asked me to also post the pictures to the blog), so we've got quite a few photos. If you don't want to read any more (because all the details of the day are journalled below), this is a good stopping point. If you want to show your kids pictures of her during her day to help them process or if you're curious yourself what you do with a bunch of tests, and a day at Seattle Children's Hospital then enjoy!! The journal will be fun to see her and I process the good, the bad, and the ugly, we all know this will help our family and little Chloe through it all (thank goodness for digital though- we've had some interesting pics)!

Ever since I told Chloe she could photograph stuff, she's been stoked she gets the camera and gets to tell mommy what to take pictures of too! So there are pictures of the hospital, the cool things you see there, and of her going through the process... the tired pictures, the waiting pictures, the testing pictures... the celebrating pictures... she really kept asking for pictures! (Thank you to Auntie Lissa for the great idea). We should have taken more- as we don't have any of a lot of the people that we saw, but we tried to take a lot!

On Friday, 1/23 - she got a hall pass right at lunch and we were off on our way to the city for our afternoon appointment! She's never had a special hall pass before I guess, so she was stoked! we parked outside at the outdoor parking because it was such a beautiful day. When you walk in there, there is a whale fountain (we discovered it last spring with Blake's experience there) where you press your foot on a button and water comes out his spout. Its cool, but Chloe had to take our word for it, because they must have turned him off with the cold weather! Oh well... we discovered more cool stuff! We didn't have the camera on Friday, so we couldn't start the pictures... but when we came on Tuesday, 1/27 we started Chloe's photo journal.

To start, we parked on Orange Whale 4. This is Chloe and Nonny on our way into the entrance (after waking up early, taking the 7:05 ferry, seeing all the snowfall, we finally got to the hospital at 8:15). As you walk in, you come past these cool lizards (or are they frogs?) that are huge. They are hiding behind bushes, there is a green one, a purple one, and a grey one. Chloe thought they were fun, so we took this picture of the one on the ledge catching a fly.

Once you come in the doors, Children's has a new policy that EVERYONE who is at Children's (except for kids under 12) have to show picture i.d. at the security check-in and then they get a badge made! We got our first set of badges on Friday, so this time we only had to say who we were and they made us new badges! Voila! As you can see we just got our badges! (We got to keep them too- for memory sake.)

The cool thing about the hospital is that it is broken into different zones- the Giraffe Zone, Train Zone, Whale Zone, Rocket Zone... and I'm sure many more, but what a cool, fun concept for kids!! We spent a lot of time in Rocket Zone and Whale Zone... As you can see Chloe had fun taking pictures of the "under the sea" life that they've got artfully displayed on the floors, the ceilings, the walls of the hallways, the waiting area, and everywhere- its neat.

After we got our badges, we checked in for our appointments and because we had so many, we got a TON of stickers with her name on them (to give to people as the day went on) and we got the coveted "purple pass" which lets you not wait in line again when you come to check in! Special treatment for sure, but it was so nice at the end of the day when we were pooped out, to not have to wait yet again!

We spent a lot of time waiting at Radiology(Nonny isn't going to love this picture, but Chloe got her in the Radiology waiting room)- the picture of etched octopus legs is at the entrance to the Radiology waiting room (on the wall above is a big, giant red octopus).

The first big step for the day was to get an IV placed so that Chloe would not be poked numerous times... this was an emotional time, as I said before, Chloe is TERRIFIED of needles and pokes! But the technician was so sweet- she placed "hugs" on Chloe's arm (what I would refer to as those band tourniquet things), she was super fast, and did it all on the first try! The first picture is of Chloe getting ready- she's sitting in the cool cushy chair with big arm rests in a little room... then they do this little local numbing stuff that doesn't poke, it just "explodes like a pop can" on her skin... then they put the IV in- you can see that Dudu comforted her arm (her favorite stuffed pet since she was 3) along with little silky (her safety blanket- favorite of all time!!).

After we got the IV, we went down the hall through Rocket Zone to get to the Bone Scan room. These are pics of Chloe at the initial bone scan (before she was injected with the glowing stuff). It maybe took 10 minutes all together. She was perfect at laying there still- she even got to see her own scan on a special screen that moved over and down so she didn't have to crane her neck.

After the first little mini scan, off we went to U. Village (Chloe's new favorite place after hours of killing time on Friday) to try and entertain Chloe. She complained about the IV hurting a lot... but we managed to get her coat 1/2way on and we did a lot of window shopping. That's the best time to shop there- nobody is out! Chloe discovered that she likes Anthropologie about as much as mommy and Nonny- she is such a thoughtful little girl that she got me (yes me- the mommy) a little present (with Nonny's help). She got me a teacup that I admired in Anthropologie (we collect tea cups in our house). She told me when we got in the car that it was because I was the best mommy, coming to all of her appointments, treating her to fun when she wasn't having fun with tests, and being her mommy! Made me shed some happy tears. What a lovely little girl I have. Chloe's arm was hurting... and since she's a lefty she couldn't eat very well either- so she roped her Nonny into feeding her! My cheese and bread girl needed a little snack in the car before we went back inside for the actual bone scan.

During the bone scan (which we forgot to take pictures of) she got to watch part of the new American Girl movie- Carissa... and then off we went to wait some more for the MRI... Then she suckered Nonny into continuing the reading (which we'd been doing during all of our tidbits of waiting) from the Rainbow Fairies book "Kylie the Carnival Fairy". One of Chloe's favorite series!

Finally after waiting for what seemed like forever Chloe and I headed off for the MRI- only 1 adult was allowed to come with her (it was good for Nonny to go and have a break too). When we got into the changing room, Chloe got to change into scrubs (HUGE ones, but she thought she looked enough like a nurse). We weren't allowed to have earrings, watches, or anything in the room, but they were absolutely thrilled that we brought an ipod so Chloe could listen to her favorite calming music (Enya)! I got to wear some earplugs and stayed right by her the entire time, stroking her hair while she listened to the music with the huge headphones! She did great!!

When the MRI was over, we changed back into our regular clothes, put our jewelry back on and then found out the IV was NOT coming out (just in case they needed more tests run). Boy that scared us all quite a bit, but we focused on distractions... we had about an hour and a half to kill... so we got some refreshments... we toured the hospital and all the zones of the hospital to discover all sorts of cool artwork, displays, sculptures... Chloe enjoyed that!!As you can tell though, we were all pooping out by now and boredome started to set in!

After all of these crazy pictures we didn't take any pictures of our actual "doctor's appt", but we did get a CD of all of her tests! We didn't even get a picture until we got back to the car and all sighed a huge sigh of R-E-L-I-E-F! Chloe was forcing a smile here (because to her any news was "bad" news if she still had to have surgery). I should have taken a picture of mom and myself- we were beaming... a long day, but THRILLED to get the best answer we could have gotten!

After such a long day, we caught the 6:20 ferry, played some cards, and went to dinner to celebrate! We made it home pretty late (for a bunch of girls that had been up all day), but daddy had surprised Chloe with a dozen roses and the balloons (the picture was at the top of this post).

Stay tuned... but this is all for now! Thanks everyone!

More appointments- Woohooo

So we're in for a VERY long day tomorrow... we've got an 8:30 bone scan checkin, followed by an 8:45 injection... then wait for 3 hours and come back in for an 11:45 bone scan for an hour or so... then move onto a 1:00 MRI for an hour then we wait... and see the doc at 3:45! Phew.... long day at Children's... but so glad to get everything out of the way in one day! Send us prayers for energy, patience, and great news!

We've got an appointment tomorrow

So we've got a bone scan appointment early tomorrow morning AND a follow-up with the specialist later in the day... so looks like another all day affair for us tomorrow! I told the scheduler that it was ok that the appointments are spread out in the day because my daughter enjoys U.Village and eating out... she laughed and thought that was hilarious. The radiology scheduler who scheduled her bone scan also thought it was cute when I asked if Chloe could bring her own video to watch during the scan, when she said yes I mentioned it was "Mama Mia" and she giggled and asked if she could come join her (jokingly of course). I love my girl- she's got such great taste in shopping, food, and movies! We'll make a great day of tomorrow!

Thank you all for your thoughts, prayers, and encouragement! We hope to have a surgery date and final diagnosis by the time we come home tomorrow, so pray for finality, so we know what step to expect next!

By the way, we're going to start a photo journal for Chloe (a fabulous suggestion from my twin sissy- better known as Aunty Lissa)... so hopefully I'll post pics of Chloe as we go through our upcoming appointments.

Stay tuned!

Motherhood

To cry or not to cry.... that is the big question. At what point do you cry with your child to show her empathy about a scary situation?? At what point do you hold back those tears to show her strength and encouragement and not worry her unnecessarily? AHHHHHH.... its so hard to decide what is best! At what point are you crying too soon- before a final diagnosis and at what point do you just let all the emotions out. Motherhood is always a "to do?" or "not to do?" scenario and this is one I'm struggling with right now.
I love my little girl... she's so empathetic... she's so sweet and kind and every night she asks ME what MY favorite part of MY day was before I can even think to ask her... she is adorable! I hate to see her upset... I know she is scared of surgery- which is imminent- one diagnosis or another, it will still happen. In fact, I know that my girl will be more upset if I cry then to cry herself. But at what point do I have to show her that crying is ok without at the same time scaring her into crying more? ARGH! Motherhood... wish there was a manual on this one!

Our dear sweet Chloe...

Dear friends and family-Some of you might be surprised to be hearing this and others are anxiously awaiting an update, sorry to do this mass-email thing, but we want to inform everyone and don't want to miss anyone (so if you see someone not on the e-mail, please let me know!). Its been a whirlwind from Wednesday to now and we've been caught up in it. We apologize to those of you who didn't find out until now, but we honestly haven't had much time to talk and have tried to be sensitive to Chloe's emotions (so not many conversations when she has been around... which hasn't left much free time before late at night, to talk to people).
We have just discovered on Wednesday that Chloe has some sort of bone tumor behind her right femur. We've had an x-ray and a CT and been to Children's Hospital to see an orthopedic specialist... each test has ruled out some things. Now we are waiting to have a bone scan next week (we don't know when yet, until the nurse calls us on Monday to schedule it). As of now it is considered an A-typical osteochondroma- a bone growth that is not presenting itself as a "typical" growth. Thus, the bone scan! We are hopeful it will just be a funky osteochondroma.
Chloe will have to have surgery to remove this, because it impeeds her movement (she can't bend her right knee past 90 degrees) and causes her off and on pain. However, we won't know how soon she will need surgery until we get the bone scan done. Could be one week, could be 6 weeks.
As for now Chloe is doing well, we are doing well, and we're all just waiting. The waiting game is the hardest, but we're hopeful for better news next week! Chloe has been emotional when surgery gets mentioned, so PLEASE BE CAREFUL ABOUT DISCUSSING THIS with your children and around Chloe. Chloe may bring it up, but we have found it is best to let her be the one to instigate this. No reason to worry children unnecessarily! However, at the same time, she has been enjoying some cards and things that she's received to "cheer her up", so if your kids feel so inclined to pop something in the mail, she LOVES to be surprised and open cards!
From here on out, we'll post updates here on the blog.
Thank you for your love, support, prayers and friendship!
Heather and Kent (Chloe and Blake too)