Celebration!

You all knew it was coming I'm sure!  A celebration post in honor of Gracie finishing her first phase (induction) of treatment!  And she is a trooper!  We are so proud of her and how she has handled all of the horrible things that have been her normal this month!  This weekend has been full of "time stopping" moments for me!  This is one of the first...you got it a Saturday afternoon walk just the three of us!  She hasn't really wanted to sit in her stroller much since she was diagnosed and it was the last thing I remember doing together before she was diagnosed.  It's always been one of the simple things I  loved and now I appreciate it even more.  There's a little belly shot at about 30 weeks so our little guy knows we love him too!

She has been so interactive today!  It's amazing how much more energy and life she has now that she is 2 days off the steroids!  Getting ready to go feed the ducks!  Another favorite of ours!

There are those ducks and she was actually excited to get out of the car for the first time since we brought her home from the hospital!  Another reason to celebrate we made it through this first phase without having to admit her again (our Dr was proud!!- GO GRACIE!!!)  We always have to make sure her hands and our hands are clean before we feed the ducks because now she shoves the bread in her own mouth half the time and eats it herself even though she will not touch bread at home.  Go figure. 

She loves to point, just pointing at the ducks!

This is just short video we were able to catch of her laughing tonight.  Her laughter today was the greatest gift we could ever have!!  Talk about music to a mother's ears.  We sat and played on the floor with her for quite a while today something she hasn't done all month and she laughed for about 5 minutes straight it was a little slice of heaven.  She has laughed and smiled all throughout the day today.  It's so nice to see a little portion of our real Gracie back.  She's even been crawling around and doing a little walking again with help.

Other "time stopping"moments today

-She actually smiled and got excited when she saw me after she woke up from her nap! 

-Watching her mix and drink her chocolate milk...yes she actually drank some sugar and all!

-Her sweet hugs she's been giving me!

-Looking at her and realizing she finally feels a little bit better after such a long, hard month.

-Having her go all night without eating!

I guess you could say today has been by far out best day since this all started and we are hopeful for many more days just like and maybe even better! 

We love you Gracie, thank you for showing us your strength and helping us hopefully become more like you someday.  You are our hero in every sense.  Thank you for being our little girl, we couldn't be more lucky!

A fasting success!

Late post for Thursdays clinic day, but I know we had lots of prayers being said for her Wednesday evening because things turned out about as well as possible for her fasting.  It was hard to know what to think from 1:30-4:30 am when we were up feeding her and trying to put off her sleeping meds so she would sleep until we had to leave.  Turned out it was worth every second of those 3 hours!  She went to sleep at 4:30 after we gave her all the drugs we could to help her sleep and slept until 8:45 just enough time to get her SUPER SOAKED diaper changed,  a quick sip of apple juice from her Caprisun (the only thing she would even look at for clear liquids) and head to clinic.  We even made it about the whole car ride distracting her with baby signing time and a fabulous sticker book a great friend of mine sent her!!  It was truly amazing and then she even did amazingly well as they bothered her the next hour for her vitals/blood draw and Dr exam.  She was pretty upset after she got out of sedation I'm pretty sure she just thought she was starving to death so luckily we had many options ready for her because NOTHING would do except for her cup o noodles which she ate a full one and probably half of a second before we could even consider heading home.  She even declined her one vice-American cheese.  It was pretty shocking, but she made up for it after she was satisfied with her noodles. 
Her levels looked great though and she made her way through yet another sedation/spinal tap and bone marrow aspiration just like a champ.  She is truly remarkable, I marvel at her strength and watching her endure all these awful drugs and procedures and realize what a baby I've been my whole life!  I hope she can read this one day and realize how amazing she is for getting through all of this. 

Weight: 34.0 lbs

WBC: 9.2

Hemoglobin: 9.7

Platelets: 394,000

ANC: around 4.1

These are a couple pictures from Tuesdays clinic visit.  We didn't get any Thursday we were just trying to keep her happy before sedation then feeding, feeding feeding after!

As soon as I snapped the picture she decided to drink the leftover milk in her bowl! 

Our pretty girl!

After her medicine...a pretty regular occurence now.

This is how she gets her aggression out....chewing and ripping on her blanket.  We just hope she doesn't rip her teeth out!

Our little guy!

Not to steal any thunder from Gracie, and all of you following her progress, but we just wanted to post some pictures of our little guy from todays appt!

 Nice profile huh!  Just wait til you see the 4D pictures they are pretty amazing and I must say he looks adorable already!

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I had a 3 1/2 hour appt with the perinatologist today ( or rather him and the fellow and the nurse and the MA and the ultrasound tech and the ultrasound physician...) at OHSU and I was very impressed with them and glad I'm going to be able to have my care there for the final 11 weeks.  Got my glucose test/ rhogam shot out of the way and lots of others things including these impressive ultrasounds they used a brand new technology they are trying to convince OHSU to purchase.  The ultrasound physician came in and asked if she could try it out on me and I got some great shots from it.  Baby looks pretty good overall.  They thought initially at about 20 wks he had only one kidney.  Then at 22 we went in to the perinatologist and they found it down by the bladder and looking very small.  They said it was unlikely it would be fully functioning but today it looked not much smaller than the other (3.0 cm instead of 3.5 cm) and no obstruction so they think it will be just fine other than location being different.  His head was measuring big so they're going to monitor his growth (about 3 weeks ahead of some of the rest of his body) and overall he measures about 2 weeks ahead so I guess we'll see.  Maybe he'll come early...or maybe just nice and big!!  Just hoping he's nice to his momma on the way out so I can take care of him and Gracie!

Update

Gracie's numbers are still looking pretty good we are happy to report which means she is responding well to the treatment her stats for today in clinic are:

Weight: 33 lbs 8 oz (no gain!! it looks like a little loss but she was wearing biker shorts last week and not this week so I figure she's stayed the same)

ANC: Still 1600!! YAY!!

Hemoglobin: 9.1 (her little lips were looking red so we thought it had gone up)

Platelets: 237,000

We had out shortest day at clinic yet today we were there about 2 hours!  The poor thing has been miserable all day again and just doesn't feel good.  Friday morning is our last dose of steroid this round so only 5 more doses!  We're hoping by Sunday or Monday we get a good dose or our old Gracie and her personality back...and maybe a good nights sleep for her as well as us! 

We start moving in a week from tomorrow...I guess it's about time to start packing! I finally got approval to deliver at OHSU so we won't be spread out at so many hospitals and hopefully the baby will be looking good at the ultrasound tomorrow and that I like whatever Dr I'll be seeing.  I guess it's my thing to move and change Dr's around 28 weeks that's about when we did those things when I was pregnant with Gracie. 

Wish us luck for Thursday.  Gracie has another sedation for a bone marrow aspirations/lumbar puncture and it's not til 11:00 am.  Which means no eating after 5 am.  Have you ever had to make your 18 month old fast?  Well I hope not because it's AWFUL, this will be her 4th time since diagnosis and she has 3 more coming up this month.  The only thing worse than a normal 18 mo old fasting, is one on steroids that eats every hour or more all day long.  Pray that she will be able to sleep through most of the fasting hours...poor thing. 

A rough day, but some good news

Well, today was a ROUGH day for poor little Gracie.  She slept in Grandma's arms from about 3am-7:10 when I woke to rush to get ready for her appt today.  She was not a happy camper and was really pretty miserable on the drive and then getting her vitals was quite the ordeal.  I had them give her the ativan to calm her before they drew the blood since she was getting a dressing change for the PICC line anyway ( which she does NOT like) they have to rip all the tape off her arms and her arms are very sensitive and turn bright red.  Then we had the IV chemo (Vincristine) and finally got the diaper rash cream we have had to work so hard to get from insurance/pharmacy.  Stats for the day!

ANC-1600!!!!!!  (YAY, I was shocked to see it.  Up from 300, yep amazing!)  Although it will drop again with the next big dose of chemo. 

Hemoglobin: Steady at 8.5

Platelets: 261,000

Weight: 33 lbs 11 oz (yep we only gained 11 oz in 3 days, the lowest yet thanks to the applesauce and a few other healthy things we have managed to sneak into her few foods of choice and our limiting her american cheese-just ask her there is no food better than processed american cheese she even made up her own sign for it-which she uses pretty much all day every day!)

Watching a movie and getting her nails trimmed with Dad last night.

Her precious blanket, she's actually crying right now because it's in the washer.  Her little comfort throughout it all.

Signing "please" for some cheese after her chemo.

A brief happy moment right after all the bad chemo and tx was over for the day!

So her levels are looking pretty good right now.  She's still not feeling well at all from the steroids and really seems TOTALLY miserable most the time.  So hopefully in another week and half she will be a little more back to normal with how she acts and feels.

Trying to walk!

Our little angel did some walking with us holding her hands yesterday!  It was definately as exciting for me as her first steps just over 6 months ago!  She still gets anxious and sometimes upset when we try to stand her up and is usually upset at the initial thought of walking and won't do it without us holding her hands but her legs seem strong and stable despite the fears she probably carries from past pain.  Hopefully soon she'll take her "first steps" again!  And I promise  no mother will ever be prouder!  She is quite the amazing little girl and I get strength from her everyday. 
Last night she even slept a little better.  We got ANOTHER prescription in attempt to help her sleep and it seemed to help.  We'll see if this one lasts more than 1-2 nights!! Either way 8 more days of the steroids!!  Just over a week and we've made it through 3!

10 days left of steroids!

Gracie playing with her xylophone yesterday.

Playing with Grandma after she got here. 

The surprise of all surprise she stole Grandma's birthday ice cream cone (yes we celebrate big here these days) of course before grandma had tasted it or she wouldn't be able to have it.  Yes she is licking an ice cream cone for the first time in weeks despite our best efforts to encourage her to eat ice cream!  She hasn't wanted anything sweet at all but has branched back out a little bit and actually had a few licks as well as some applesauce and yogurt (as long as we put it in her macaroni and cheese bowl and switch off every couple bites!)

 Pictures from clinic today.  She was playing with her PICC line for a minute after they drew her blood.  We had her pre-op appt for the placement of her port they are doing June 7 to take the place of the PICC line.  It was the first time I had to fill out a questionnaire about her and mark yes for cancer, a little bit of a sobering moment for a mother.  We spent an hour down there then headed up for her regular clinic visit.  Her counts were looking better today!  Stats for the day:

Weight: 33 lbs (we only gained about a pound this time instead of 2 1/2 lbs)

ANC: 300 (up from 200)

Hemoglobin: 8.5 (stayed the same)

Platelets: 254,000 (jumped from 140,000!)

No transfusions again!  Yay!!  The Dr says she doesn't anticipate any drops in her levels for the next month probably so we should be able to avoid transfusions for a while we hope!  We could have gotten away with a fairly short day and been out of there by about 11:30 if it weren't for my other two errands that took several hours after.  Instead we didn't leave til after 3 pm.  Thank heavens Grandma was there to watch Gracie so I could leave her safely on the oncology floor while I ran around the dirty hospital for her sedation appt and trying to figure out the pharmacy/insurance issues again.  Everyone in the clinic knows us by now and they all love Gracie.  They are so amazing to work with, they will do everything they can to make things go as smoothly as possible and I feel very lucky to have such wonderful nurses and dr's working with us to get her through this awful process.  She has been more irritable and uncomfortable the past two days and we've had to give her oxycodone regularly to help with the pain.  We have tried multiple drugs to try to help her sleep and they are effective sometimes but didn't seem to work well last night.  So we got some Ativan to try (but they don't have it on hand so we are hoping it will be in tomorrow) it has seemed to help her relax in clinic a few times for different procedures. 

Tonight we got her to stand next to the coffee table for a minute or two and play with some toys!  May seem small but it's so wonderful for us to see!  After over 3 weeks of not walking.  The Dr said today we need to start trying to encourage her to stand and hopefully she'll start walking again without needing physical therapy.  She's still pretty miserable from the steroids so it's hard to want to make her do anything.  I used to be ok at tough love when I needed to, but it's never been more difficult than now.  Every once in a while we get a smile or a laugh out of here it's pretty rare from the steroids and it's usually when she throws something like her binky on the floor :)  I guess she delights in us washing them again for her!!  She's still our sweet little Gracie, but we can't wait for 2 weeks when she should start acting more like herself after these steroids wear off!