So it goes...

Yesterday was another hair rousing day at clinic!  Beads of sweat covered Gracie's forehead  and her hair was totally soaked as I did my best to hold her down against my nice round belly!  Yes I would say that was by far the worst experience accesing her port of the 4 times we've had to do it so far (and she hates it every time).  This time she kept kicking the nurse and was totally freaking out and right when the nurse went for the 2nd dressing she jerked big time and the dressing got stuck to the first one in the wrong place and almost ripped out the needle (which has to be really exact for the methotrexate she was getting).  The next 5-10 minutes (although it seemed MUCH longer) were spent holding her while she got more and more upset as the nurse tried to put dressing after dressing on to try to get it to hold in place so we didn't have to completely start over.  It was anything but fun for any of us and I'm sure Gracie would second that if she could!  We then resorted to a good movie to try to calm her down and distract her while i tried to hold her as still as possible so the access would stay exactly where it was and she could stop sweating so the nurse could slap on the last dressing.  By the end she probably had 6-7 dressings on covering her entire chest.  The next worst part is what goes on must come off so they had to rip all those dressings off before we left.  Her poor little chest was all red...poor thing.  I keep wishing I could explain to her what's happening so it wouldn't be so bad if we could get her to relax it would only take a quick cleaning of the area one little poke (and she's numb from the cream I put on before we leave) and one dressing.   But, I suppose that's our lot with a 20 month old...poor thing.  I'm hoping and praying(and maybe you all could pray) that it will get better next time and she will adjust to it like she has her blood pressure and other vitals.  She's amazing! Now she just lets them do it and doesn't cry anymore. 
Sorry no pictures this time but she passed counts which we are so so grateful for.  She has to pass her counts in order to get her treatment for the day!  Her counts looked great including her chemistry's they have to send down to the lab!  Please stay where you are little numbers!

Clinic stats

Weight: 31 lbs 4 oz

WBC: 4.9

Hemoglobin: 11.5

ANC: 1600

Platelets: 617,000 (the dr said the vincristine she's getting can cause platelets to keep producing so that's why hers just keep going up and up.  I calculated it and they are 45x higher than they were when she had her first transfusion.  WOW that's a major increase)

They upped her dose of methotrexate and she also got vincristine.  Luckily after forgetting last time she had vincristine to give her miralax and her waking up in pain from constipation I came home and immediately got her a bottle of milk and mixed in her miralax.  Hopefully it will prevent a repeat of the last experience. 

I have decided that the only sedative or sleep aid that seems to work for her is Methotrexate...it does wear her out for a couple days after.  Yesterday she took a 3 hour nap after clinic and then although she stayed up til about midnight I took a turn sleeping with her on the blow up so Todd could have one night to himself and she didn't do her regular middle of the night wake up for hours charade and we stayed in bed until 9:45.  It was a miracle.  And she took another good nap today...but she is still awake not at 10:15 pm and no signs of sleeping so our luck may be out.  We'll see how tonight goes!

What's new and unexplainable?

Well the good news first Gracie is growing and changing just like any other toddler!  She walks and runs!  It's so fun to watch her run we went on a walk the other day...she walked or ran most the way and as we headed down the street Todd decided he wanted to change into some shorts b/c it was too hot outside so he ran home and as soon as he started she turned out and started yelling  "daaaaa, daaaa" as she ran back towards the house.  She stopped for a minute to watch the kids play basketball in the street then looked back at the house kept running and yelling "daaaaa" it was so cute!  The poor guy can't get a break.  He goes to work (at a place he doesn't love) then comes home later in the evening to find a little girl that can't be separated from him...yes and he even has to sleep with her most of the night except of course for the long hours in which they are awake together during the night (to be explained later on). 

This week she has learned to feed herself with a spoon and fork.  She's had peach cups, cottage cheese, yogurt, pudding (the pictures above are all of her enjoying feeding herself pudding for the first time), and finally ate some oatmeal this morning which used to be her breakfast of choice until a month or two ago when she decided not to touch it.  She's starting to eat more normally and trying and liking the foods she wouldn't touch since she got sick...we're grateful even though we're sure it's only temporary since she'll be back on steroids and lots of new chemos coming her way. 
If I thought toddlers had a lot of energy before I have learned a new perspective on things!  I mean this girl can go...and go...and go!  Seriously I mean she makes me wonder why I need so much sleep!  She was sleeping about 7 hours a night for 4 nights straight with typically only 1 1/2 -2 hours of nap often broken up throught the day.  And when I say 7 hours a night I don't mean from 11-6...I mean broken scattered naps at night.  Here's an email I wrote to our Dr about the quandary we were in..which reminds me have I mentioned that I LOVE our Dr?  Yes she lets me email her anytime and she has always responded the same day and sometimes multiple times in one day!  She's amazing...thank goodness we have such a good Dr to help us through all this. 

"I have another unexplainable that I'm hoping you can explain...we went from tired Wednesday to wired from Thursday to now.  She doesn't seem to need or want to sleep ever and when we put her down or take her into her room to sleep she screams and I mean screams.  She is currently sweating from every surface on her body because we tried to put her to bed for the night.  We try letting her "cry" it out and she just gets more and more worked up it's almost like steroids, but will still never go to sleep and even if we go in after she's cried or try to rock her to sleep before she starts crying she starts SCREAMING as soon as the lights go down in her room and flails her body around until we take her out.  She won't lay down on the bed with Todd like she used to and she is typically going to bed for the night around midnight or 1 am instead of 9.  Thursday night she went to sleep probably around 11 pm or later and woke up at 1:30 and wouldn't go back to sleep until 5:30 am then woke up around 8:30 for the day.  She slept for a couple hours during the day then stayed up until 12:30 slept til 4:00 am woke up SCREAMING and we finally calmed her down and fell asleep with Todd an hour later for a couple hours.  Then she only slept for about 1 1/2 hours total naps that day and it was in Todd's arms broken up.  Last night she went to bed around 1:00 am after we gave her a dose of ativan around 10:00 pm because of how little she had slept the nights before and she woke up 20 minutes later totally inconsolable.  We took her out of her room even and she just kept screaming and throwing her back all over the place for about 15-20 min we finally got her to take a drink and got her blanket again and she fell asleep and slept with us for a few hours before waking up and doing the same thing.  She finally took a good nap from 1-4 in her crib today and thought maybe that would help but now it's bedtime and we tried putting her to bed and of course the same story screaming til she's practically soaked from sweat and kicking nonstop.  most the time she will calm down if we let her get up and play or watch a movie, but still doesn't fall asleep for hours no matter how long we let her cry or how long we stay in herroom and try to get her to sleep.  Is there any thing that would be causing this?  We called in last night and they didn't have an answer.  So maybe we just lucked out and she's really trying to get us ready for a new baby :)  Just wondered if you had an explanation or a med that might cause it but the only new thing she's had is the methotrexate and she was tired tuesday/wednesday so doesn't seem likely."

The night I sent this email turned out similar and thankfully last night was quite a bit better.  She went to bed I think around 10:30 for an hour or so woke up so we gave her a good dose of benadryl which hasn't helped in the past and she fell asleep in the other room with Todd for about 7-8 hours only waking once for a pacifier.  I woke up at 6 and couldn't believe that i had just slep for 6 hours straight!  By the time I crawled out of bed about 8 I couldn't believe a person could feel so good!  I was so refreshed from finally getting a good stretch of sleep!  I sent Todd to our bed for a few hours before he had to go in to work (since he had spent the entire night on the floor poor guy...due to our air mattress giving out for good this time and the one I ordered didn't get here til today even with the 2 day shipping b/c of the long weekend).  He woke up after about 2 hours and said something like "wow, you're like the mother of the year today, look at all you've done this morning".  Yes...amazing what you can accomplish when you actually get a bit of sleep at night. Here's hoping for another night of decent sleep!  Oh and thankfully no clinic again this Tuesday...we go Friday this week since it's every 10 days now!! 

A "normal" fabulous weekend!

I have LOTS of pictures from this weekend...so look at your own risk!  I'm sure at least grandma will enjoy...and our family in the future!  Just look at that happy face!

Her famous long tongue.

Yikes...family breakfast time. Some of us are better at mornings than others :) Clearly I'm not one of those.

Wearing Mom's sunglasses...of course she wanted them on her head not her eyes.

Our first summer fire in the backyard.

Even though she doesn't like cookies currently or most sweet things she's still toddler enough to know that the best thing for her to do with a box of open cookies is take as many as she can out of the box!

Here's the guilty culprit...no she didn't eat those cookies but she did have her first roasted marshmallow and liked it.

Dad somehow always ends up with this hat on.

I've always loved a good fire and roasted marshmallow.  One of the simple pleasure in life.

Believe it or not we still have some friends after being M.I.A for so long.  We had Ben and Jodi over for dinner and a fire.

Yes, Jodi somehow manages to suck in every child that sees her.  They love her, Gracie included!

A few pop its.  The silly girl even snapped one in her fingers and didn't even flinch.

Believe it or not we went to the parade in Hillsboro on the 4th.  Gracie really enjoyed being around all the people and we were glad we could take her after being so isolated for a couple months.  We did lather on the sunscreen twice though now that she's so sensitive to the sun (due to chemo and the septra she takes every weekend).  Another thing we worry about besides our excessive hand washing and germaphobia :) 

Queen of the day.

A snack with dad...are you surprised to see her with Dad again?

Gracie's friend Makena and her Mom, we met them at the parade.

Dad got us each flowers before we got into the car and Gracie stole mine to go along with hers...I guess she liked mine better than hers.  It was worth it for this smile!

I made Gracie a little rice krispie cake to celebrate it being her last day of consolidation (phase 2) and since it happened to be on the 4th of July we combined.  She LOVED the blue stars that's all she wanted.  And I don't think she would like cake currently desserts aren't of much interest to her so this was the best I could think of since she likes marshmallows.

Those little lips.

yep...she's a pretty normal toddler and standing on chairs that swivel while holding blue dyed stars is pretty much the best time you could have!

That or attempting to bite a candle...luckily she didn't actually bite it!

We got her a few summer presents to go with her party. 

Her famous "I don't know" arms

Dad's will be dads.  Yes he kept pouring the freezing cold water on her and she would react so funny and then keept playing.  She tenses up and says "ooooohhhhhhhhhh" with her little lips in the shape of an O. 

She looks so proud and grown up.

A little Daddy time in the pool.

Our brave girl was sitting in the freezing water, it was almost too cold for me to enjoy putting my feet in but she loved it!

After swimming we went on a walk and lit some flowers and did some more pop its before going out to the fireworks in Banks and parking in our now traditional parking spot with a perfect view and escape to miss the crowds.  Although she wasn't that impressed by the fireworks after about 5 min. 

Our 4th was PERFECT!  I almost forgot about clinic the next day (on purpose), I didn't want anything to put a damper on the day.  We had a week off clinic that ended with a 3 day weekend with Dad and lots and lots of fun.  Something we were definately due for and won't be seeing much of after this month. 

Thank you to my sweet family for the best weekend I could have asked for.

Interim Maintenance (starting phase 3)

Today I saw a glimpse into our future as a little boy probably around 7 years old walked into the clinic waiting room not long after we arrived.  His head bald and his face moon shaped like our little Gracie's her first month on steroids, he was somewhat grumpy and seemed to just not feel good (which i'm sure was the case).  I fought back the few tears that were attempting to come as I realized this would be us in another 8 weeks.  It was somewhat of a rude awakening after the most "normal" weekend we have experienced together as a family in a few months.  

I'll start with our clinic update and backtrack to our fabulous weekend! Yesterday she finished consolidation (her 2nd phase of tx) and today was her first day of interim maintence which lasts for 8 weeks.  They say it's "kind of a break" so we better enjoy our break right?  She only goes in every 10 days this phase and only has one sedation (spinal tap) on day 31 which means we have no sedations the whole month of July!!  YAY!  And...to top it all off, can you believe NO oral medications (except as needed like zofran) for the whole 8 weeks.  No one in this household will have to crush a single pill for 8 weeks.  And our sweet Gracie won't have to deal with the side effects of the steroid or go without eating in the evening for 2 hours before we give it to her and 1 hour after.  It will be nice to not have to wake her up as we often had to because she would be hungry before bed so we would half wake her 2 hours later to give it to her and put her back to bed.   
Clinic stats for today!

Weight: 31 lbs

WBC: 5.7

Hemoglobin: 11.7

ANC: 3,000 (she has to be at 750 to move forward with tx from now on)

Platelets: 554,000 (probably double what mine are!

Her levels looked great and so did her bilirubin and liver enzymes which all have to look good enough in order for her to get one of the chemo's she started getting today (IV methotrexate).  I thought the methotrexate looked like slime it was a greenish color (the nurse calls it mountain dew).  She gets IV zofran before they give it to her because it can cause nausea and some kids vomit while they are getting it.  Luckily she didn't and still hasn't.  Although around the time her dose of zofran should have been wearing off she was gagging like crazy on the cottage cheese she was having before bed, so I'm guessing she was feeling nauseous and gave her another dose before bed.  The actual drips are quick about 5 minutes each so only about 15 minutes plus flushing...but we left home at 9:00 and didn't get home until 2:00 because we do a lot of waiting.  We wait to get called back (esp the day after a holiday they're usually super booked trying to fit two days into one), then they take her vitals and we wait for the nurse to come access her port (which she still hates-it's the one thing I really don't like about clinic right now) and draw her blood.  Then we get her counts and they send another sample down to have her liver levels tested which usually takes about an hour.  Then we see the Dr...thankfully Gracie is warming up to her, she wanted her to hold her again today and usually doesn't even flinch when she listens to her and checks her ears -she says she's the ear whisperer I guess she must be whatever she's doing is working.  Then the Dr has to get the levels and approve her for the chemo before they order it from the pharmacy and Gracie got the zofran while they waited for the chemo to get sent up...then we finally got the methotrexate and vincristine. 

They had to deaccess her port for the first time today while she wasn't sedated...and she hated it just like getting accessed.  But it's hard to blame her, we have to hold her arms down while she's laying on a table because it's so high up and we don't want her touching the area after they clean it.  I'm pretty sure I would hate anything that required people holding me down.  Hopefully she'll adjust like she has to the vitals.  They say she does really well, I only have her to compare it to so I'm sure some toddlers do much worse.  But, I think anything seems bad to a Mom when their child is screaming helplessly while you are holding their arms down and they're being poked or having tape ripped off.  Now if we can get her sweating to stop while she screams so they don't keep putting more and more dressings on to keep it in place. 

So you may be wondering what does one do with a toddler for 4 hours at clinic?  A lot!  Today we walked the halls many many times and of course she had to stop and peek in every single open door to try to make friends with all the other kids (many of them quite a bit older than her).  I pushed her around in the cop car they have and played in the playroom with cars and puzzles and colored and played with balls.  Then we walked around again and got back in the car and she backed into all the other toys all on her own!  I fed her some lunch and we played on the computer in the waiting room and she rocked on the boat again..and of course enjoyed a good dose of elmo while she was getting her chemo.  Here are some pictures from today!

The favorite computer in the waiting room.  She patiently waited and rocked in the boat in until the two boys playing there got called back.

Waiting for the nurse.

EXHAUSTED after a day in clinic, she fell asleep not long after we started home.

The Station

I've been doing a lot of thinking today...so here's some food for thought!

THE STATION

By Robert J. Hastings

         TUCKED AWAY in our subconscious minds is an idyllic vision in which we see ourselves
on a long journey that spans an entire continent. We're traveling by train and, from the
windows, we drink in the passing scenes of cars on nearby highways, of children waving at
crossings, of cattle grazing in distant pastures, of smoke pouring from power plants, of row
upon row upon row of cotton and corn and wheat, of flatlands and valleys, of city skylines and
village halls.

    But uppermost in our conscious minds is our final destination.  On a certain day at a certain hour, we will pull into the station.  Bands will be playing and flags waving.  Once we get there, so many wonderful dreams will come true, and the pieces of our lives will fit together like a completed jigsaw puzzle.  How restlessly we pace the aisles, damning the minutes for loitering--waiting, waiting, waiting for the station.

"When we reach the station, that will be it!" we cry.

"When I'm 18."

"When I buy a new 450 SL Mercedes-Benz!"

"When I put the last kid through college."

"When I get a promotion!"

"When I reach the age of retirement, I shall live happily ever after!"

    Sooner or later, however, we must realize there is no station in this life, no one earthly place to arrive at once and for all. The true joy of life is the trip.  The station is only a dream, it constantly outdistances us. Yesterday's a fading sunset, tomorrow's a faint sunrise. Only today is there light enough to love and live.

    So, gently close the door on yesterday and throw the key away. It isn't the burdens of today
that drive men mad, but rather regret over yesterday and the fear of tomorrow. Regret and
fear are twin thieves who would rob us of today.

    "Relish the moment" is a good motto, especially when coupled with Psalm 118:24, "This is
the day which the Lord hath made; we will rejoice and be glad in it."

     So stop pacing the aisles and counting the miles. Instead, swim more rivers, climb more
mountains, kiss more babies, count more stars. Laugh more and cry less. Go barefoot oftener.
Eat more ice cream. Ride more merry-go-rounds. Watch more sunsets. Life must be lived as we
go along. The station will come soon enough.

 

I hope I can learn this concept well enough to pass it on to my family, especially Gracie as each day is most definately a journey for us.  A journey into the unknown, a journey we can hopefully learn from each step of the way and let each minute be to our benefit for having living through it. 

Our week off

Well, it's Tuesday so it seems like I should be posting an update!  However magically we have no clinic stats or events to post about on this particular Tuesday...I believe this is the first Tuesday in two months that we haven't set foot in the hospital!  Yep, we LOVED it!!  A week off was just what the Dr prescribed...thankfully we got our Dr to approve because Gracie's counts had been good since she started the oral chemo which we are only one week away from finishing this time around. 
Today is officially 2 months from the day Gracie was diagnosed with ALL and we are so happy to have made it this far!  So how did we spend our day off?  I guess the same as most other days of the week, but we are happy to trade a clinic visit with a walk, a nap, and playing outside!  And of course a good daily dose of the Letter Factory. 
I got a picture today of what I now like to call the triple threat.  Gracie has been attached to her blanket and binkie for quite some time now and it seems even more so since she was diagnosed and had many of her comforts of securities taken from her.  So we're happy to let her have them with all the chaos introduced in her young life.  The most recent addition was a baby, which today she exchanged for a monkey her cousin Hallie picked out on a family vacation and we got in the mail today. 

The triple threat ( I think I'm the one that's going to be threatened if I ever lose one of the above items)

She got that monkey out of the box and hasn't wanted to put it down since, which is a big shock because she's been somewhat afraid of animals including many stuffed animals for most of her life.  Apparently monkeys are one of the less frightening species...or maybe just monkeys with ice cream and flowers. 

Other news...

-Todd finished his first rotation last week and started up a new one yesterday.  One down, seven left to go!  As always we are so proud of him for being able to balance school and taking care of a pregnant wife and little girl who can't leave his side once he's home.  He's in high demand around here!

-Gracie's appetite has perked up a little lately and she's had a few tastes of some of the fruits she always loved again.  Today she had a whole peach fruit cup (she wouldn't touch them for months) and the other day she ate several strawberries and a little watermelon.  I think she ate a whole banana today too.  She had a whole gogurt for breakfast-after not touching yogurt for weeks, despite being offered many many times and many different flavors!  And last night she ate spaghetti with us for dinner, this may not mean much to many of you, but anyone who's stayed with us knows Gracie does not like to eat what's served for dinner anymore.  I'm sure it helped that is was pasta (but sauce has also been a no go for some time). 

Here she is eating some strawberries...anyone notice all the stickers?   She is still OBSESSED with stickers and has recently started putting them on herself.  Before she did not want them on her but insisted on placing them in a certain place on others (including the dr's and nurses at the clinic, which she still does and I think they all expect it now- I have seen many of her stickers on the nurses badges weeks afterwards, I guess she has a way with everyone not just us).

Other likes currently...she likes bubbles, still loves swinging and being outside, still loves Baby Signing Time and has added on the Letter Factory, and has started signing and pointing out lots of things like tree, leaf, star, moon and other things.  Her baths are back to what they used to be...FUN and we love not having to torture her nightly with wrapping her arm and having her scream nonstop during the whole bath time while trying to keep her arm dry so we wouldn't have to take her in for a dressing change (big stress relief). 

We have actually gotten together with a  few friends to go for walks or play outside, but we are still OCD and very very cautious with taking her around many people and she still hasn't set foot in any buildings other than the hospital for clinic/inpatient stays since she was diagnosed.  Which means I rarely leave our little bubble of home/outside/walks.  I think we're all adjusting to our new simple lifestyle of staying here and spending our time doing the simple things.  We would trade any vacation or event for a happy Gracie kept home from the hospital.  Her smile and laughter are the pure joy in our home and every day is a treasure to be with her. 

What's next?

Today has been an emotional day, believe it or not I have cried very little in the past couple months.  Which is surprising because normally I can be somewhat emotional.  I guess I was saving it all up for a day like today.  Hopefully I can get all the tears out today so I can move on with life and enjoy the next 7 weeks I have with Gracie before the baby comes.  Several things have brought on the emotion, but if I had to pinpoint the most touchy place in my heart it would be a fear of not being able to pick up Gracie for a while after I have this baby.  Don't get me wrong I am very excited to have another spirit brought into our family, but the timing of it all is a bit overwhelming at times.  For the first month and half of Gracie's battle with leukemia I totally omitted the thought of how I would handle things once the baby got here.  Why?  Because it was the only way I could get through each day.  Now things have improved with her and I'm anticipating round two of awful coming in September for Gracie as well as a baby that seems to think there is no end to growth.  He measured three weeks ahead on the ultrasound today in his head as well as his stomach.  Their estimated weight for him was 5 lbs 14 oz and they don't want to change my due date because he was only 1 day ahead at my 12 week ultrasound and 8 days at my 20 week.  Which if we do the math here momentarily...the Dr helped me with it so hopefully it's accurate :)  If I actually had the baby on my due date...August 13 and he continues to grow at the rate he has he would weigh about 10 lbs!  Maybe there are some hero mom's out there that don't think that's big, but count me out of that title because Gracie's 8 lbs 10 oz and large head was enough to keep me plenty sore for about 8 months. 
The good news...he is no longer breach.  Which leaves me the decision of choosing whether I want to risk tearing like I did last time or opting for a c-section.  To be honest I don't love either option, but recognize I have to get him out one way or another.  I have another ultrasound in 4 weeks so I'll probably wait and see how things look then. 
Other good news...I successfully left Gracie with someone other than family for a few hours to go to my appt and she did well and I think I handled it pretty well to.  I no longer look for ways to get a few hours away from her I just don't like leaving her at all.  Luckily I had a  friend that took fabulous care of her come over and she was even sound asleep on the couch when I got home.
Oh and some more good news...I got Gracie's sedation changed on July 5 from 2:30 pm to 10:30 am!!  YAY!!  It's much better for her fasting to not be during so many daylight hours.  Holidays have been a bit of a hassle with her sedations.  She seems to always need one right when the holiday comes around and the anesthesiologists have all taken a long weekend.  So we're grateful to have snuck into an earlier spot for her sake on this one.