Methotrexate again...

So it goes...my predictions seem to almost always be wrong.  Haha good thing I didn't go into oncology my patients wouldn't be pleased with my totally wrong predictions.  Then again maybe that's why they don't predict too much for us...This week I thought she would bomb counts!  I was wrong...she somehow went up from 900 before her last chemo to 2400 in her ANC.  When I asked the Dr why he said there is no logical explanatino and tried to tell me why then stopped and said if I told you something I'd just be making it up!  Haha gotta love a Dr with enough humility to be honest...I appreciated it anyways:)  So Friday I took Gracie to clinic and Todd was gracious enough to stay home with Tyson who ended up sleeping for like 3 hours of it...they somehow know when he's responsible for them it seems and sleep so much better.  Or I'm just so tired that I see it that way...probably the latter. 
Anyway at clinic she got her zofran and we waited for her labs from downstairs to come back...and when they should have been back the nurse called and they said it was lost somewhere in the tube system.  So she redrew the blood and we started again.  A while later it came back good ( her liver enzymes-blood chemistries- have to be at a certain level for methotrexate as well as her blood counts).  Thankfully she fell asleep for about an hour or so while we waited b/c her appt was at 12:30 pm despite my efforts to get an earlier appt.  She woke up mad while they were giving her chemo, but we managed to hurry and get out of there and head home just before the rotten friday night traffic I think we left about 3:30.
Her sleep schedule is way off even though we had somewhat regulated her for a few nights she slept last night from midnight til 11 am.  And she just woke up from a nap...Yikes it's 8:45 pm.  You'd think at 7:00 it would be for the night.  Nothing like cancer to ruin a child's sleep schedule.  She's sleeping more from the methotrexate she usually only sleeps a max of 9 hours a night typically 8.  Tyson has really been a starving little guy i pumped one night b/c I was exhausted and Todd thought if he slept right next to him he would sleep longer.  Nope...he still wanted to eat about every 2 hours.  He's darn cute though and we love him.  But I wouldn't turn down a little more sleep at night.
Gracie woke up yesterday morning around 10 and didn't want to eat for about an hour and then when she did after a few bites she got a scared look started crying a little and grabbed at her stomach I tried to hurry and get her out of her seat and to the sink...but alas it was unsuccessful and we both ended up with smelly oatmeal on us.  Just makes me sad that she has to keep getting stuff that makes her feel that way.  Wish she could tell us so we knew how long to give her her medicine cause she acts ok...then suddenly throws up.  Oh well only 3 more doses of the IV methotrexate.  She is really acting older and LOOKING older.  Several of the nurses and her Dr mentioned it at clinic this week.  Shes' getting taller and thinning out.  She's lost some weight too probably a combo of her not eating much for a few days after chemo  and some of the steroid weight coming off.

Clinic Stats:

Weight: 14.8 kg (down from 15.1)

ANC: 2400

Hemoglobin: 11.7

Platelets: over 400,000

She's talking more and more and seems to understand so much.  Her hair is also beginning to come back in.  Just peach fuzz still but looking darker and there are more little hairs growing in.  

Started Interim Maintenance 2

Well we made it into the 2nd to last phase.  Sounds awesome huh!  Only two more phases!  We've made it through 4! And the two most difficult!  It is really awesome and for now we won't think about just how amazingly long the last phase will last ( as long as she had been alive when she was diagnosed with this awful leukemia-18 months).  She snuck above the necessary 750 ANC with 900.  Makes me think this phase is going to drag out and we're going to fail counts a lot.  We've done this phase before but with lower doses of the chemo.  But last time when she started it she was at 3000 and after the first treatment dropped to 1500 I believe...so I guess time will tell.  One thing is sure we'll probably learn more patience and an even greater ability to live with our unplannable schedule!  We know we have clinic on the schedule but nothing more than the next appt can actually be planned because she may or may not pass counts.  Anyways she did pretty well today as always it's no fun to watch your baby cry out when they give her a sedative (propophol) and then quickly go into a deep sleep.  Even when your doing it for the 12th or who knows anymore time in 6 months.  Glad to check another one off though.  We didn't see our Dr today and haven't for probably a month.  I feel a little more uneasy when someone else does the spinal taps I've just grown to be comfortable with her I guess...oh and also she's an awesome Dr and Gracie likes her best too!  Probably won't see her the rest of this phase because she's only there Tuesdays and our new schedule is tentatively every 10 days.  Daddy and Tyson came with us and he was a trooper.  Slept the whole way there and the whole way home.  If only he had slept a little more last night:)  Mommy was super tired this morning when she had to round up the crew and try to get us all out the door by 8:00 (haha-that's way early for us...but we do it for clinic).  Also no we didnt' make it out the door by 8:00 I think it was 8:25 but I believe they were up in the clinic by 9:10 or 9:15 which is pretty good given the time of morning we were taking off and traffic.   I missed her height and weight b/c I had Todd run her up and parked and brought Tyson and all the stuff later to avoid ruining the sedation time for being too late.  Still grateful we ended up with a 10 am sedation not 4 pm that would have been a REAL drag.  Gracie did great over all but got pretty upset and inconsolable about 15 min after she woke up from sedation and we don't know why.  She was fine then not then fine then not...you get the picture.  I just wish she could tell us you know...maybe she had a headache from the spinal tap, maybe the sedation made her feel lousy, maybe she was too hungry or tired.  Wish I knew so I could fix it better...but learning to just deal with things and do the best I can when there's nothing else I can do. 

Clinic Stats

WBC: 2700

ANC: 900

Platelets: 354,000

Hemoglobin: 11.3

Oh also one more major side note.  Dad has been home for the last week and we have Loved it.  He's heading  to Utah this weekend for his brothers wedding and we'll miss him and hope the wedding goes off perfectly!  Congrats to Marc and Tiffani in advance!  And my sister Cheryl is flying in tomorrow night!  I'm way excited to see her it's a pretty good trade since the kids and I can't make it to the wedding! 

Until next week...

Tyson's 3 month

Well Tyson had his 3 month birthday!  I love celebrating anything I get the chance to, but what do you do for 1/4 birthdays?  I think Todd had a great idea but we didn't do it!  He suggested we all get a glass or bottle of milk and drink it with him haha!  Instead I probably just annoyed everyone with mentioning several times that  it was his 1/4 birthday and having us sing to him.  We love our little "Tys" as Gracie and now Dad is starting to call him.  She has been waking up the past few mornings and asking for Tys.  Last night she wouldn't go to sleep because he was out here screaming after having a blowout and peeing all over his face while I tried to change him.  Of course it ended in a lot of screaming and therefore Gracie coming out to check on her brother.  She does love him! 

He is such a handsome little guy and has gotten less fussy lately.  He was sleeping better for a few nights but I think he was just playing a joke on his Mom because I thoroughly enjoyed a few five hour and one 7 hour stretches only to be rudely awakened to a 2-3 hour schedule again.  So I tried to get one feeding off to sleep and pumped 5 ounces after 3 hours of sleep he sucked down the whole bottle and was still hungry so I had to get up anyway and he ate quite a bit even after that and was up again a few hours later.  I guess he's growing...well I know he is cause he keeps getting bigger...but cuter too!

He's got just enough hair to do a little faux hawk maybe you can see it...hard to see in picture maybe but he looks cute anyways!

Loving some time with Dad!   I think Daddy's all enjoy them more as they get more interactive and Tyson is starting to smile and talk whenever we give him attention it is so fun and he's so cute to watch and interact with.  Gracie has even got him laughing once or twice.  It was so sweet so see them both so young and still lovinc each other. She of course always wants to rip his monkey out.  He's always got his fist in his mouth and I've started to seeing him looking at his hand.  He's finally learning he has hands isn't it amazing the learning process they go through?  Can you imagine not knowing you have hands?  I guess we all went a couple months without knowing.  He has also decided it's best to have several blowouts a day in fact pretty well every time he dirties a diaper so that it seems I eternally will be behind on scrubbing out poopy clothes and blankets...although I get tired of it with him I realize it is not a big deal while with Gracie 3 blowouts and peeing all over would have meant a very dificult day. Amazing how our ability to deal with things and what we see as hard changes with trials and learning to endure. 

Here he is bundled up for Gracie's birthday walk.  We are loving watching him grow and develop and are excited for all the new phases to come!  He is so strong as he always has been and holds his head up so well!  We love you little Tys!

Clinic-attempt to start Interim Maintenance II

So after Halloween and her birthday came our cold splash of reality (although there were a few moments mixed in between with reality).  Clinic!  She did great fasting thankfully because she failed counts so new treatment. 
Clinic Stats
Weight: 33 ish lbs

Height : 2 feet 11 inches- she looks taller to me lately

ANC: 400 (reason she failed it has to be 750- the last set of chemo really wiped her out it's been 3 weeks since she's had anything).

Platelets: over 400,000

Hgb:  around 11.

We go  back Tuesday to try again.  Quick story I wasn't expecting to pass b/c I knew there was a chance she wouldn't so I prepped for it forgetting that scheduling another sedation could be a challenge. Took the news well and Wednesday got a voicemail saying her sedation was scheduled for 4:00 pm the next Tues.  Arrival 3:00 sedation 4.  I tried to remain calm and thought maybe it can be changed but freaked out inside.  Can you imagine NO LUNCH for a child and NO NAP!  That would mean she couldn't eat from 10 on and she wakes around 9.  So breakfast and then then she usually takes a nap about 1:30 or 2!  Haha that would be when we would leave for clinic 2 and then she'd have 2 more hours before her sedation.  YIKES!  This sedation thing can be a stressor for sure...so I immediately called the oncology clinic and asked them to please keep calling sedation in hopes for a cancellation.  Bless Sally's soul!  She called back the next day and said she wanted to kiss the sedation person she talked to because they got it changed to 10:30!  Oh such a blessing esp since even after she fasts we don't know if she'll pass counts and therefore it would have been possible for her to go without naps and lunch just to get to clinic and find out she failed counts!  I told Sally I could kiss her and felt MUCH happier that day!  Also nice to know we are going to a clinic where they feel to a degree how we feel...she wants the best for Gracie to instead of just telling me no I can't keep calling because that's a pain in my neck!  Grateful for such great staff that are helping us on our journey...esp since I'm sure their job isn't always the easiest...but hopefully rewarding. 

A picture of a "normal" hour where we went and played and ran in the leaves!  She loved it and so did I!  And Tyson slept happily in the stroller!  Got a few looks like what are you doing crazy lady with 2 small kids in the street (we were on the side of the road).  The answer we were just making a lasting memory and experiencing pure joy!  Worth the stares I think!

These little things remind me so much of Gracie (not sure what they're called) but she has always LOVED to hold them shake then and blow them.  Hope her wishes are coming true!

Halloween

Prepping for trick or treating:)  Here's our little bee from behind!

Flying with Dad

Our extremely handsome/trooper of a dinosaur!

Getting a pic with both...a challenge!

Gracie loved this pirate ship when we went trick or treating!  She LOVED every minute of being out and pretending like we were "normal".  She was shy at the doors and got scared by a few "monsters"-Todd calls everything a monster and so does she but otherwise she would walk around like the queen bee that she is.  Knowing exactly where she wanted to go and like she was in charge of this ship...that's right she is!  Especially since April.  You think it's hard to discipline...I was ok at it until I watched her suffer over and over and over again.  Working on it...but lots of things don't matter one way or another so we let her lead our trick or treating route for the most part!  I'm not sure who enjoyed us being "normal" most.  Gracie or Mom!  I felt so happy holding Tyson and walking around outside watching her walk around so happy and feeling like life was normal...I forgot all about clinic the next day until we got home!  Nice to at least forget for a couple hours!

Tyson was a great little guy his outfit was nice and warm and I just held him while we went!  We all had a great time!  And the kids looked adorable!

Gracie's 2nd Birthday!!

So I'm slow at posting...too many big events in a short time!  Leading to a roller coaster of emotions in this mother.  So we'll just give the high points!  Our SWEET GRACIE GIRL is 2!  I hear people say all the time that they can't believe it's been 2 years for some reason it does feel like it has.  It feels like it has been exactly two years.  The time has flown at times and gone slowly others!  But I feel like we have taken the time to enjoy the little things and althought the last 6 months have been a challenge she has been a light in the darkness for our family (along with Tyson...what can we say we love our kids).  Her smile, laughter, dancing, personality are so contagious and she can get us all dancing and laughing...she did last night!

A picture of her bee cake that my amazing friend toiled over...I have the best friends in the world!  I think it turned out great and Gracie loved playing with the bees!

She took all the bees off and played with them...of course while dressed in her bee costume (thanks to my amazing sisters for finding the jackpot on that costume...it was perfect...and after a few hours of being terrified of it she decided she LOVED it).

We decided we would try to have a party...pictures of all the guests are included!  Haha...it involved Gracie, Tyson, Mom and Dad!  Thankfully she's not old enough to know that every single guest besides her family ended up sick (oh except one of my friends that stopped by for a minute...she did cry when they left, I think she's missing the social interaction she hasn't had).  We did our best to have the best day and party for her despite no guests and please anyone reading this that couldn't come know that we are very grateful to you for not passing on your sickness just sad that because of her leukemia anyone with even the slightest sniffle should stay away.  We had cake, opened a few presents then went for a drive and ended up at Pacific playing in the leaves and running/walking up and down the stairs over and over again.  I think she enjoyed it!

Her new wiggle car...doesn't work too well inside...we'll have to get some good use of it in the spring outside!

She has been shoving her blanket in her mouth...and her hands and fingers and looking at us...and not stopping...and not stopping and...you get the picture.  Lets just say with a neutropenic child and germaphobic parents there is not much if anything that could cause more stress and anxiety.  Thankfully no fevers yet.  But lots and lots of anxiety.  And LOTS and lots of effort to pretend like we don't care..seems like the best plan of action.  Doesn't seem to work too well, nothing does.  She has gotten a little better over time though.  Of course she decided to start this the week of her birthday and Halloween.

Sunday morning we woke up to this!!!  Magical huh!  Gracie opened her curtains and found it herself..and kept saying "bear, pooh, heart"  It was perfect for her!  We still don't know who did it...I guess that makes it even more magical!  Thank you a million times for whoever it was that made her day and mine!  I feel like i want to give her the world because I'm her mother and all the hard things she's going through...so thanks to all those who are helping me do that...or doing it for me! (including her Daddy who she absolutely adores)

We got her dressed and went out to play!

Back in for some breakfast...candles in her toast!

Wouldn't be a meal if she didn't dump out her drink on her tray and slurp it up!

Opened another gift!

And ended our day with a walk to look for "moster"-monsters.  Then some more cake...yes we did share some of it! 

HAPPY HAPPY BIRTHDAY GRACIE DEAR!  We are blessed beyond measure to have had 2 wonderful years with you and to be ancipating many more.  Something at one point I did wonder if I would have.  You are one of life's greatest treasures in mommy and daddys's eyes! 

True emotion

Well...I find myself posting some things that I think...should I share that with more than my personal journal?  But, lets face it this is my journal and my families journal so if you don't want to know my real feelings I guess this is a blog you won't want to read.  Last night I looked up at a beautiful picture of Gracie right before her 1st birthday and for the first time I felt angry.  It came out of nowhere and pierced deep.  She'll be two in a couple days and I am very excited to celebrate with her...but I guess it's kind of hard to face that things aren't what they were on her 1st birthday.  We've had a two week break I think from chemo....it's been long enough that for the first time since her chemo started that i can't tell you how many days it's been since she's had chemo.  And I don't want to calculate it or know how long it's been I just don't want to start up again next Tuesday.  I don't want to go to clinic and get her port accessed and pour more poison in her veins.  I want them to do it to me.  I dont' want to be the bad guy and see her pleading eyes look at me with tears pouring out while they poke a needle into the port I wish she didn't have to have.  I know it's better than getting a vein each week...but how many kids do you know that need to have blood drawn weekly?  And it should be that way.  I wish I didn't know any kids that did.  All the kids I do are absolute heros.  A million times stronger than I am.  They are happy and cheerful despite the difficult circumstances they are living long before they should know what it means to suffer.  I'm very grateful for A LOT of things and like I said it's the first time I've really felt angry about the situation we're in and I'm going to do my best to let go of all the negative feelings and enjoy this weekend and the good things to come.  I'm not begging for sympathy...I know each person reading this has many challenges of their own and don't want to minize any of them.  Just documenting my real emotions me and my posterity.  I guess I just don't want to put on some type of crazy glaze over everything I say in my journal (the blog) just because it's read by other people.  I believe it's ok and normal to have these types of feelings and want my kids to understand that.  It's ok to feel angry, frustrated and upset, we just have to deal with them in an appropriate way.    I couldn't be more grateful to have been given Gracie as well as Tyson...and Todd.  I have been truly blessed in my life and now I'm going to go focus on my blessings which are MANY!  Happy Weekend!  And stay posted for LOTS of birthday/halloween pictures of our super cute kids!