How I feel...

Starting this phase of treatment for Gracie has been something i dreaded as soon as we made it through the first phase.  And now that we're in it I know why.  I want my little girl back.  Not only do I feel tired from the lack of sleep I'm getting with a starving newborn and taking care of a sick girl...one look in her direction or thought about her and my energy is zapped.  It is so hard to watch her feel this way.  I think back on our "carefree days" of going out together everyday and I now haven't taken her out swimming/to the store/playdates/church or anything else indoors besides the hospital for almost 5 months.  To say the least it breaks my heart.  Her bright eyes are not so bright these days...I want my girl back. 

Man I miss that girl.  Look at those big bright eyes...now they are just  worn out, heavy and dark. 

I don't want to watch her suffer anymore.  I don't want to take her clinic and hold her down while she screams.  I don't want to think about every single thing she touches in such fear that she may get a fever and we'll end up in the place she HATES (the hospital).  I don't want to think I should call the Dr when her temperature is 99.5 (that's what the Dr told us Friday when we took her in to have her levels checked for a transfusion).  I don't want to look at her and hurt because she hurts and then hear again that she looks "good".  She doesn't look good...she looks pale, tired and miserable. 
I know we have lots of blessings and good things.  Just had to get some of my real feelings out today!  Hope we get our real Gracie back in 6 weeks (if not sooner)
Oh and I'm tired of having to give her so many drugs every day that she doesn't want to take.  And not loving all the Gracie hairs I keep finding on me, her, tyson, Dad highchair, binkies, blankets...you get the picture. 
Tommorow is another day right?

Clinic last Tuesday

I never seem to be able to post the same day as clinic anymore.  Here's a quick update.
Here stats were approx:
WBC: 3.1
ANC: 600 (scary we hate when it's low the stress level shoots up in a parent when you know your baby can't fight off an infection...it's a very scary time for us.  It was 5700 last week so those awful drugs are doing their job...and it's still dropping so next week may be nothing)
Hemoglobin: 11.5
Platelets: 348,000 (or around there)
Weight: 13.9 kg

She got her 3rd dose of Doxorubicin and another of Vincristine.  Started steroids that night and needed omeprazole, zofran and miralax to counter act the side effects of those nasty drugs.  So we are doing a lot more crushing, mixing and administering drugs these days again.  Can't say I missed it.  We really enjoy not having to prepare and force them into our little girl.  She's not spitting them out though which we're grateful for even though she doesn't like taking them.  We gave her 6 different drugs yesterday and probably the same today.  This weekend she takes an extra one morning and night.  She is losing color in her face more all the time it seems.  We think her hemoglobin is probably dropping and she's getting anemic.  She just doesn't seem to feel well.  The day of clinic she took a 4 hour  nap and this morning she slept in til 10:30 of course woke up many times before that but so tired she just wanted to lay back down.  Her eyes are VERY dark underneath and she's more clingy and wants to be held.  In my mind I imagine this is what many parents think they want their kids to act like other than not feeling good.  Sleep a lot, wanting to rock and cuddle.  I now appreciate very much her getting into things and being a toddler.  I love to watch her run around and see her acting like a normal toddler...what do they call them the terrible twos.  I must say I absolutely love this age and in some ways feel cheated out of gettingt to spend them with her feeling good and not going to clinic and worrying about ANC and fevers and her touching anything at all and then touching her face or putting it in her mouth.   I wish we could have playdates and go out and explore.  But..I also recognize that I wouldn't appreciate those things as much as I would now.  Because they would be normal...I wouldn't know what it would be like for those to not be an option.  So I guess at least it will give me a better perspective for the rest of motherhood.  I suppose if I have to experience it it's better in the beginning so I have this perspective for the rest of my mothering days instead of learning it once  they are mostly grown.  It's going to be a long couple months here...but thankfully things have gone very well overall so far for how many complications we've escaped such as fever and drug side effects.  She is losing more hair of and on but no chunks yet.

Tyson's Blessing

We blessed Tyson this past Sunday.  September 11...not I didn't plan that day on purpose just happened to be a good day for our famlies to overlap and be here the same day.  Both sets of grandparents and Aunt Julie were here.  We blessed him at home due to Gracie having a low ANC (lack of ability to fight infection-low immunity).  So the Bishop came over about 1:30 and Todd gave him a very nice blessing.  In my heart of hearts I wanted the perfect pictures of him and with  Gracie sweetly holding him and a cute family picture...turns out he didn't want to show us much of his blessing outfit b/c he  would cry unless bundled up and in someone's arms.  Oh and as for gracie wanted to pose for a picture...well let's just say I'm learning to let some things go!  We got some pictures of the reality of the moment though:)

Right after the blesing...he was a perfect little guy during the blessing.  Cried before and after but not during.

Gracie with Dad after in her pretty dress

Not too bad of a family pictures...except the special boy that the pictures taken for is hiding.

With Grandma and Grandpa Bucher..the only way we could get Gracie in the picture!

Not sure if you can count her as being in this one haha!  Cute girl!  We love our real life babies that help us realize what life is all about.  With Grandma and Grandpa Hurst and Aunt Ju Ju.

Great picture I think of his sweet smile...of course Gracie's leg is in it!

She does love her little brother!

Trying to give him her doll's bottle.  Looks like he wants it. 

Gracie with Grandma B

He just wants some "peace".  This was  from our mock blessing day photo shoot last night when he was being happy.  At least it shows the full outfit and he's not crying! We are so grateful to have Tyson in our family and can't wait to watch him grow up through the years.  We love you Tyson!

Tyson update!

A quick update on Tyson...he rolled over from his stomach to back last Saturday night twice!  He was born strong! He was just over 5 weeks...a week earlier than Gracie did as a baby.  He has been pretty fussy at times and has an incredible set of lungs he can sure make a loud cry when he wants to.  He weighed in at 11 lbs 8 oz Tuesday evening after we got home from clinic.  I left a message for the advice nurse b/c he's been fussy, gassy and had some projectile vomiting the past month.  But at midnight the night before clinic I thought we could finally go to bed when I put him asleep in his bassinet.  A few minutes later he had spit up ALL over the sheets, the bassinett and himself.  So the next day after clinic I finally called to see if they had any advice.  I left a message for the advice nurse and went in to take a nap with Gracie...she's usually really restless after chemo...but exhausted.  When I got out I got a call from Todd saying the nurse had called him very concerned that Tyson was projectile vomiting and they needed to see him that night.  He of course was wondering what was going on....I told him nothing new just the same thing that's been going on for a month.  I called the nurse and they really wanted to see him that night so I packed up and headed for round 2 of Dr for the day.  Turns out I was right about the problem...I still have an overabundance of milk.  6 weeks old and I'm still producing way to much milk.  The Dr was totally amazed.  She could not believe I had too much milk rather than not enough with all the stress of having Gracie with cancer.  I did find out a little bit more that has been helpful...ideas to try.  He's been getting too much foremilk so it causes orange like diapers in the morning because it doesn't get fully digested b/c the low fat milk goes through quickly without taking time to digest.  He's also more gassy b/c it doesn't digest properly..he's always hungry b/c he's not getting the high fat milk.  Oh and my dairy intake is limited to see if that helps the gas...if you know me that's the hardest thing for me to limit I LOVE milk and pretty much anything dairy!  But...if it helps him it's worth it.  I guess we'll see.  He's a lean little guy...but gaining very well and he's in the 75-90th percentile and has been steadily since birth.  I would say he's been fussing less since I've been trying to give him less foremilk and more of the hindmilk. 
Tomorrow he'll be 6 weeks old!

Sleeping

Yawning

Smiling...he has really enjoyed Aunt Julie holding him.  I hope I can give both the kiddos enough time once it's just me and my babies!

Gracie update

We made it through week one of steroids! And we are halfway through our week break.  Nothing like the first phase...but a bit of insomnia a couple days with little or no nap and some waking at night.  Eating super frequently but not as much as the first month...and very particular.  Seemed like she only ate cottage cheese, noodles, mac & cheese and rice.  Nothing else comes to mind but I may be missing some.  We have had a lot wetter diapers and wet through several including nighttime diapers at night.  We have had some meltdowns and I like to call them "steroid tantrums" but overall she has been much happier than expected so I can't complain.  And we eventually got a better system for getting her to take her meds.  Strawberry syrup instead of chocolate and distracting with a favorite movie...followed by an intense clapping session by everyone present...except Tyson. 

Tuesday Gracie and I went to clinic and Grandma B stayed with Tyson.  It was nice for me to have some one on one time with Gracie even though it was at clinic.  We got there and I was promptly reminded why holidays are no longer something to look forward to.  The waiting room was PACKED we could barely find anywhere to sit.  And since Todd still has to put in his hours for the day doesn't seem like much of a holiday...but I suppose we'll just appreciate holidays more in the future.  We waited for about 45 min in the waiting room and luckily she was more subdued and wanted to be held most the time since there wasn't much for her to do with all the kiddos in there.  She wouldn't be weighed without her blanket...so we weighed her with it and wasn't to thrilled about having them get her height.  And she did NOT want to be in her room at all.  So we walked around the hallways over and over (correction I walked and carried her...she did not want to walk-very out of character for her.  We finally found a little car that I could push her around in  and I have no clue how many laps we did while waiting for the nurse.  The crocodile tears were pouring when they accessed her port.  She was MAD...M-A-D.  We got it in and hooked her zofran up to the car and did a bunch more laps around the clinic.  Then she wanted to go in the room and we watched Nemo while sitting in the car for a while then resorted to sitting on my lap thankfully when she wanted to get out and I was tryign to hurry and unhook the meds while keeping her from deaccessing her port.  We got the meds and got deaccessed (which she was pretty mad about again) then came the meltdown.  The nurse trying to be helpful took the car out of the room along meds and she started screaming and crying and couldn't be consoled.  Finally I calmed her enough to change her soaking wet diaper and thought we would pack up and go home.  When I put her DVD player and nemo away...another meltdown.  The nurse Grace came in and brough stickers and got her some salty crackers and a big girl cup of water.  That did the trick and luckily we could go home after that as long as she had some crackers to eat. 

Clinic stats (somewhat decieving from the steroids)

Weight: 31 lbs 10 oz.

ANC: 5.7

WBC: 8.0

Hemoglobin: 12.7

Platelets: 468,000

Should  be a stark contrast this coming Tuesday when we go in...we anticipate her being neutropenic.  Actually she could be now we just don't have a test to prove it.  She has done really well with treatments over all.  But Tuesday night we proved once again that parents aren't perfect.  We forgot to redose her zofran and it ended up in a nice pukey mess.  Poor little sweetie.  And of course Tyson is screaming like crazy during this whole thing.  But I guess on the bright side its' the first time she has vomited from chemo.  Hope to not repeat next week.  So many things to remember and think about all the time...Yikes.  On a sad note...this morning is day 10 when the drs said she coudl start to lose her hair.  I found several hairs on her pajamas and in my hand this morning when she woke up after a LONG night of being awake.  She slept in til about 11...but kept Dad up quite a bit.  Who needs sleep anyway right?

Delayed Intensification-sounds bad right?

Well here it is I've been dreading it for...well since we finished the first dreaded phase of treatment.  This is basically round two but lasts 8 weeks.  Her first day was Tuesday and I am slow in posting...so I better hurry since she's in clinic right now.  She had ANOTHER spinal tap.  Seriously I'm ready to be done with them.  I'm losing count it's either the 9th or 10th.  She did great with the fasting though...she had a two and a half week break from clinic.  The longest yet and going back I think she had forgotten a lot and was much more traumatized by it all again...or so Todd says since I was down with Tyson getting his ultrasound for the worst parts.  Her counts were awesome...probably the last time we'll see the for a while they anticipate her needing a few transfusions this phase...it's part of the plan knock everything out in hopes of taking the cancer with it.  She also had some vincristine and her first dose of "red death" or "red devil" i guess they call it both.  It's real name is Doxirubicin...either way I don't really like the thought of it even in small doses.  It will probably cause her to lose her hair within the next week.  And we had to have the ECHO done before to get a baseline of her heart so they know if it causes any damage.  She'll have to have those every 5 years for life I believe after having this drug. 
Not sure on exact clinic stats this time but her ANC-2300. I think her hemoglobing was 12.5 and her platelets were around 348,000. 

She wasn't really interested in her traditional cup of  noodles after a sedation.  But she was really into the froot loops I found.  She ate the whole bag and of course starting saying and signing more.  And nothing else would satisfy.

She wanted Dad to lay by her of course.

We started the steroids Tuesday night and it has been a REAL challenge this time.  She is bigger, stronger and smarter than before...and has more energy.  She is determined to spit every drop of them out causing much stress for her pharmacist Dad who is very concerned about patient compliance...and the possibily of recurrent cancer from her not getting all her meds it.  We've tried MANY different ways already in just 3 days and so far the best is mixed in strawberry syrup I got yesterday to try.  Her eyes have been looking more and more heavey and darker underneath.  You can just tell that she doesn't feel as well as she usually does, much more lethargic and she's getting the steroid mood swings and irritability. When I look at her I usually feel two emotions very strongly I feel very sad that she has to go through all of this and I just love her so much I just want to be next to her all the time and hold her. 

So this morning I got up at 1 am to feed Tyson after going to bed around 11:30 because I had to pack for both of them for clinic...and to my delightful surprise I had a bit of a sore throat.  Ok I lied I was not happy about it.  So Todd ended up going with his Mom to clinic while I stayed home wishing I was there and that I didn't have to worry about getting her and the other kids at clinic sick...I was told to sleep because of my obvious lack of sleep with a newborn but I never actually fell asleep.  partly because Tyson doesn't like to be put down especially during the day and partly because I couldn't stop thinking about her and how things were going.  So enough about me...she just got home from clinic and I doubt she had much fun.  But she was a trooper again and got another dose of peg asparaginase.  They had to wait for 2 hours after because there is a risk of anaphylaxis...and we have to watch her for a day to make sure it doesn't happen.  Yeah I hate this drug.  No clinic stats they didn't do a blood test for the first time in clinic prob cause we were just there Tuesday and it's not count dependants this next 4 weeks. 

Tyson's miracle

A picture of Tyson lounging on the amazing quilt Grandma made for him.

So it turns out we have had a third miracle this year!  Tyson's right kidney went from most likely not present to a  "possible but doubtful" prognosis for full function and now after his first and hopefully last ultrasound it's fully functioning!  So grateful for the news...it is still located down next to his bladder, but no big deal as long as we're aware and know where to have him wear protection for contact sports and such.  He was a trooper we scheduled it the same time as clinic and I took him while Todd took Gracie to clinic.  He was a champ although he is totally a newborn in the sense that he was constantly startled by the guy touching him with the probe.  Here are a few pictures...  Oh and also he is 4 weeks today!  Seriously where did that month go? 

Always grunting with his hands in his face!