Clinic and chemo

Well we made it through the our iv chemo this week.  Tuesday we had clinic and got up about 6:30 to get ready for our 9:00 appt.  We finally made it home just long before 9 pm that night.  We were all pooped and READY to leave clinic.  But of course grateful in a strange sort of way that she was able to get the chemo after failing counts the week before and then failing the first test that morning.  It came back her ANC was 710 and needs to be 750 so the sent the labs down STAT to the lab downstairs and it came back quickly (shocking) as 900. So she passed.  She got a lumbar puncture (spinal tap) and methotraxate placed (glad we didn't have to fast for the 3rd time for this treatment).  As usual she needed a high dose of propophol to keep her from squirming so they can get the exact spot on her back.  After that more hydration and her two new chemos.  Then 4 more hours of hydration after the chemo to make sure it all went through her system, I guess cyclophosphamide can cause kidney issues if it doesn't run through their system.  Writing it out it doesn't do justice to how long it seemed to last.  We did lots of things to try to keep her entertained and of course Tyson had a MAJOR blowout and wanted to be fed many times and Gracie wanted to run around with her IV which of course needed to be plugged into the wall because the battery ran low while we she was satisfied watching movies and eating lunch.  The keeping her entertained and following her while she's hooked up to the IV with it pulling out at all and deaccesing is stressful if you don't believe me ask Grandma B.  Believe it or not our fighter fought out a nap until about 6 pm...then when she woke up she was not too thrilled (MAJOR UNDERSTATEMENT) .  She was pretty much really mad and as luck would have it Tyson refused to eat until she woke up super mad then he decided it was time to eat and was as mad as she was.  Eventually she calmed down and was running around playing while I finished feeding Tyson and then we packed up all our bags (we probably could have gone on a weekend excursion with all the things we had to survive the day plus the chemo and supplies we needed for our week at home)!  We were the last ones in clinic and it was after 7:30 by the time we had Tyson fed and started down to the car.  We got home and got a simple meal ready fed the kids, gave Gracie a sponge bath since she couldn't get her line wet and she stayed accessed until Friday.  Then we still had to work in her oral chemo (no eating for 2 hours before she takes it and an hour after).  We got it in I think around 11 I think.  Let's just say it was a long day... even though both kids were troopers.

Her nap around 6 pm after being at clinic since 9 am and being woken up early to go to clinic...and having a sedation.  She's pretty strong willed.

Sweet angel girl

Grandma (our lifesaver) and tyson (careful don't move him if he's sleeping unless you WANT to feed him so you can leave as  soon as clinic ends then he won't wake up until it's time to go and then he wants to eat...that's alright I assumed that would happen...worse things could happne right?)

Last weeks clinic

Well I never posted about clinic last Tuesday.  Maybe because I was too bummed and it would have been a major negative downer post.  Maybe cause I didnt' know how to express my feelings.  Either way it's been a tough week for me.  There have been some bright spots as always if you look but it took me a few days to see them and I've had to work really hard to constantly try to remind myself to see them.  Gracie failed counts last Tuesday which was quite a shock to not only me but the doctor and nurses.  Her ANC fell from 1100 to 500 from Friday to Tuesday and they appeared to be on the uphill they had gone from 1000 to 1100 the week before.  Her hbg was at 10.9 and her platelets at 275,000.  They were all slightly climibing except her ANC.  Tuesday I was way bummed...I had spent several hours packing the bags and the car getting everything ready for Gracie and Tyson to survive an entire day at the hospital.   Planning on 8-10 hours including needing her beloved foods for after sedation once she finshed fasting.  Went to bed late got up early....finally got on the road and to the hospital packed all our bags and kids in and they BOTH had poopy diapers but the clinic was full so we waited and waited for the bathroom to change Gracie because she had a nasty steroid/chemo diaper rash again and letting poop sit in her diaper is NOT an option.  Finally we started changing her in the hall and got just about done when they said they were waiting for us and we needed to hurry.  I grabbed Gracie and took her in and let Tyson and the rest of the stuff with Dad and Grandma.  We got the dreaded port access done (after a mild blowout fromTyson) and numbers came back...she had failed counts for the first time.  The Dr kept looking at them trying to figure out a way she may be able to pass...impossible.  So that was it.  Time to go home...but not without her 2nd favorite part of clinic deaccessing her port.  Second only to accessing.  She HATES it.  So do I.  So we'll try again this Tuesday.  Wish us luck.  Wish there was an easier way to get her numbers so we knew whether or not to bother going in somedays. 
Now that it's almost a week later I have seen the bright side on a few things.  She has felt GREAT this week.  I guess I forgot what a 2 year feels like off chemo and steroids.  She has been so happy.  And we haven't had to give her any drugs(although a mother never forgets the dread and anxiety of coming chemo or anything bad or hard for their child...it's always hovering in my thoughts).  And her diaper rash is looking a LOT better.  Grandma Bucher is back to the rescue.  I'm sure she's tired of us...well probably not Gracie and Tyson and Todd isn't here too much so maybe just me:)  But we're grateful for all her help.   And all the other help we've had.  Hoping the next 2 weeks speed by and she feels GREAT for her birthday and Halloween.  A mother can always hope right?

Tyson-7 weeks old

We happen to have the genes for big babies who are incredbibly strong from the start.  Tyson beat out Gracie at rolling over by 1 week.  He was 5 weeks and she was 6.  We finally got a video of him this morning rolling over!  It's been a good morning overall...he has been mostly happy and so has Gracie.  The thought occured to me..."this is what life would have been like if he hadn't been fussy and Gracie didnt' have cancer....but I wouldnt' have viewed it this way...it seems so easy for these few hours...but I wouldnt' have understood that".  Yep my view on life is no where near the same as it was 5 months ago and I'm sure that was what Heavenly Father intended so I guess I'm at least learning some of what he wants me to.  Here are a few other ADORABLE pictures of our incredibly handsome little guy. 

yay!

Can you resist that face?  That smile was at clinic this morning!  It was so much better now that the steroids are wearing off.  Actually EVERYTHING is so much better.  She still hated the port access but held pretty still while she cried and screamed.  Other than that part she was pretty darn cute.  She was scaring the nurses...if you've seen her do it you know what I"m talking about if now it's cute.  She puts one hand up and says "Rrrraaaaaa".  And she smiled and blew bubbles and even wanted her temperature taken twice...its' so fun once just isn't enough haha!

Great news!  We went expecting a blood transfusion...and left with NOTHING but a port access and deaccess.  So wonderful!  Even better that means her counts already hit their low point and are on the way back up. 

Clinic stats

Weight 34 1/2 lbs

WBC: 5.8

Platelets: 231,000

ANC: 1100

HGB: 10.8 (up from 8.5 we expected it drop to 7 something)

I'm thinking the angels are surrounding Gracie helping us get through this awful phase as quick as possible.  If she passes counts we only have 2 weeks of the awful chemos...if she doesn't we wait another week to check counts.  It's pretty sure she'll pass b/c she's going back up!  Thank heavens for prayers and answers to prayers! 

Today has been such a GREAT day!  It is almost unbelievable how happy I feel I can't even describe it when she is happy and acting more like herself.  My heart feels like it's jumping watching her blow bubbles, smile, laugh, give hugs and just acting more like herself.  I hate those steroids...you can just tell that it's not her they have so many awful effects.  They're wearing off and we never have to do that high of a dose or that long again!  Yay!  Now to enjoy the rest of my day....and the weekend with a happy Gracie and her sweet brother!

A few pictures

Sunday night "time stopping" moment we went for a walk....all 4 of us and Gracie and Tyson both did amazing.  Tyson layed and slept in the stroller (that's amazing) and Gracie sat in the stroller for the first half and was quietly carried by Todd the last half.  We actually got to "talk" to each other for a little while without screaming kids and it felt Great to get outside especially after having to shave her head that morning. 

Poor thing is SOO tired all the time.  We go into her room to try to lay down she stays for a little while then can't fall asleep and we come back out...over and over again all day.  In between the 2 packs of american cheese we went through in 2 days and more than 10 tortillas and lots of noodles and milk.  Her poop is pretty much white/tan now due to her fantastic diet.  Poor thing nothing tastes good and what she craves (salty) makes her mouth sores hurt.

She spends a lot of time in her super cute jammies now.  If I was going to feel that crappy I'd want to be in my jammies and watch lots of movies...so that's what we do.  Plus she's getting the steroid belly again which i'm sure will start wearing off soon now that she's done with steroids.  This is one of her piles...my heart feels happy when she has enough energy to make a pile.  It's her thing and I LOVE it.  I actually never pick it up cause I don't have the heart to.  Todd does sometimes but for some reason I just can't do it.  It's a sign to me that she felt good enough to make a pile instead of just laying on her bed/couch watching a movie and eating. 

Some of the important items she carefully places in her pile.  My word she is so sweet I just can't describe it.  I just love watching her do anything she enjoys.  And when she falls asleep it's like the worlds strongest magnet is pulling me to her.  I just want to lay next to her and hold and comfort her (although i try to resist b/c it would usually wake her up and she hasn't wanted to cuddled during steroids much at least by me).  THe only thing I don't like watchign is her suffer but I can't stand to not be there because I always want to be there to try to make it better.

Our sweet boy that deals with her steroid induced pushing away his legs while I feed him and she's constantly pointing to his swing when I hold him.  Although he does give out a pretty good scream on occasion while she does or while I'm trying to do somethign for her like feed/diaper change/bath and such.  He is SOO strong and alert for his age.  We love him.  Can't wait til things calm down and we can enjoy him more and give him the attention he deserves.

Here she is right now.  She's fallen asleep in the family room twice today.  Tried over and over again in her bed but never could and finally just wiped out while watching movies. 

Today

1:00 am-Tyson finally fell asleep
1:15-Todd up with Gracie to eat
1:30-finally got my shower for the day before then crashed
4:30-up to feed Tyson-he starts screaming after I'm totally had so I sneak in and tell Todd we need to switch kids...he comes to switch I sneak in she stirs, sits up and finally lays back down...todd comes back in b/c he told me the wrong time for the last dose of oxycodone for her mouth sores...she wakes up SCREAMING "DA...daaa"  Sometimes I think she hates me...but she wants me when he's gone and I remind myself it's not about me it's about her so I shield my little heart and carry on.
5:00 she stays up and wants to eat...eats the last piece of American cheese...meltdown...I tell todd i'm going to the store...he says he'll go I need to sleep...i remind him Gracie wants nothing to  do with me she'll scream the whole time he's gone...I go to  the store
5:30 get home with amer cheese and more noodles...cook more noodles for breakfast before clinic (those are the only 2 foods she will eat right now and she eat a LOT of both)
5:45-lay down
6:30-Tyson wakes up screaming
7:00-he falls asleep on my pillow
7:30-alarm goes off to get ready for clinic...I snooze it
7:40-up and try to get ready/feed tyson/pump and get everything ready for clinic to leave by 8:30
8:30-wake todd and gracie get her ready/fed
8:45-leave for clinic-she screams "daa " for a couple minutes then falls asleep
9:20-get stuck in traffic...there's an accident and a lane is closed
9::50-make it in to  clinic for our 9:30 appt
10:00-screaming through vitals..she gained 2 lbs in 3 days
10:30-nurse acceses port and can't get blood there's  "gunk" or a fibrin sheath blocking it.  Give her a med to try to break it up and we have to wait an hour to try again.  call Todd/ find someone to take Tyson so he can go to work, walk down w/ Gracie to the pharmacy to get oxy.
11:30 -draw blood.  One tube works...second gets stuck tries and tries...finally several flushes later it works
12:30-packed up and ready to head home...we're both  exhausted m mind is half gone...get all settled into care and drive offf...remember I forgot her oxycodone...my parkign spot is gone and every other one.  Get a parking pass and drive up into the big garage park...pack gracie up into her stroller and go back into the hospital up to the 7th floor get drugs go back  to the car and pack up car again.
1:30 -home.feed Gracie, feed me, give her oxy and benadryl...a meltdown...Gracie wants to go to bed....convince her to sit by me and watch Toy Story while I pump
2:30We both zonk out for two hours
4:30-up, we eat, I change her...screams when I change her diaper...sore bottom from chemo/steroids again despite us putting cream on after EVERY diaper change for over a month.  Try to put her in bath...she screams for cheese.  Put a diaper on and feed her cheese and noodles.
5:30-bath...she falls asleep sitting up in the tub.  I have to try to wake her several times before getting a response...wash her and get her out.  Let her air to heal her rash...lay her on blanket to watch movie and pump again. 
6:00 eat dinner while she watches movie, throw in a load of laundry, throw in old blowup clothes/shirt Gracie threw up on to soak, try to clean bathroom
6:30-Tyson comes home....Gracie wants to eat...he wants to eat...she wants to sleep
You get the picture our day in a nutshell!
November hurry up!  We are tired of Gracie feeling so lousy and we're all worn out.  But...we will make it one day at a time

Clinic Stats

Weight: 33 lbs 10 oz

ANC: 1000

Platelets: 223,000

WBC: 2.? can' remember

Hemoglobin:8.5

Scheduled appt to go back friday for transfusion.  She dropped from 11.2 to 8.5 since Friday and the steroids give a false high.  She finished today and the chemo reaches irs max effectiveness Friday so she will be plummeting from now til then.  Then back again next Tuesday for spinal tap/8 hour infusion for hydration and chemo if she passes counts...I'm not sure she will.  I guess we'll see.  Amazing that someone that isnt' even TWO can suffer so much.  I mean I didn't even know what suffering was by that age and she's pretty much a pro and knows better than I do at 25 how to suffer.  Which bytheway I have a hard time realizing I'm 25 most the time.  I know a lot of people say they feel younger than they are...these days I think I've got to be at LEAST 30.  These things don't happen in your 20's do they?  But I guess they do....cause they are.   Tyson is asleep on my chest in the carrier right now and Gracie is totally tuckered out watching Ratatouille next to me.  So exhausted she doesn't care that there's a computer out.  I cannot wait for her to come back to herself but for now I'm just grateful to be able to survive with the two of them until todd gets home about 10:30 tonight.  

Mouth Sores

The happenings today...I discovered some mouth sores on Gracie.  Poor thing...she has been SOO irritable and just miserable.  Hasn't eaten anything but cheese quesadillas and plain noodles (only one specific type of noodle) and some green beans.  Ding ding ding...salt is super painful for her mouth sores.  It's hard to see in her mouth...I noticed one on the left side of her tongue when  she was sucking on her binky then noticed it was all around her tongue and saw one on the inside of her lower lip.  I'm sure there's more but can't see in her mouth without ticking her off.  So I gave her some oxycodone and within half hour she was actually laughing lightly at Winnie the Pooh and having a great time with bubbles.  Best part of my day!!  Holding her while she enjoys some simple things.  Had lots of help today...the Lord is definately watching out for us.  Now please don't let us have another symptom or bad thing to post tomorrow.  Clinic at 9:30 to get her checked...no chemo and her last dose of steroid is in the morning!  So that's the good news for the day!