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. 

Halfway through consolidation (phase 2)

The waiting room in clinic is a whole new ballgame now that she's off steroids!  She could probably play in there all day...except she usually gets called back much quicker than she'd like.  Here's a picture of her in the boat she loves now, it rocks back and forth and is really cute!  There's also a child's computer with games and a little bench that she LOVES!  She's pretty much crazy about technology so it's perfect for her!  And of course as usual all the nurses and the anesthesiologist couldn't say enough about how cute Gracie is.  They all love her the second they see her.  The anesthesiologist said if our little boy is half as cute as Gracie is we'll have some pretty cute little family.  We of course agree with all of them and think she couldn't be an ounce cuter!  Although the anesthesia nurse did tell me I looked like I could have the baby any second...yikes I still have a month and a half and I look that big??  Haha!  We were lucky and Todd was able to come with us for the second time to clinic today!  It was nice to have the extra set of hands again for sure! 

Last night was the halfway mark with Gracie's oral chemo for this phase, and today was her third and final spinal tap for this phase, making it a grand total of 7 back pokes for my little angel.  She did pretty well overall, of course she hated them accessing her port again but the actual poke didn't seem to bother her just the face that someone was wiping the numbing cream and being held down by us as they did it.  But on the positive side it was a LOT less traumatic than last time b/c they didn't have to take the bandages off this time and I had put the cream with some glad press n seal on at home (yes, it actually works better than the dressings they had given us).  One piece of advice I was glad I paid attention to when we were inpatient the first week ( one of the nurses suggested it).  I think my emotions have become somewhat steeled at clinic because I remember the first time they sedated her and how awful it is to watch her go under then leave her on the table. (although I'm EXTREMELY grateful they let us be there to help distract and comfort her until she's under enough to not know we're gone).  I think my coping mechanism is to focus on distracting her and not think about it emotionally especially now that we have been doing it weekly.  Although I must admit I still usually feel emotionally drained after a day in clinic.  However, I think we're doing well and she is adjusting pretty well to lots of the treatments, they are becoming more routine and familiar with the Dr and some of the nurses and realizes that some things don't hurt like she used to think.  We actually got her vitals today without any upset today.  A huge accomplishmen!  Blood pressure, temperature, weight and height!  Today for the first time she was able to stand on the scale for weight and stand for height instead of laying in the infant one.  She did great, I am so glad she's able to stand to do that now and that she was calm enough as well.  She was walking all around the nurses station while we waited for the nurse, then Dr and then anesthesiologist.  One of them commented on how surprising it was to see her walking around and so happy after the first month being so rough for her.  We are so grateful for the improvements she's had in the past couple weeks and enjoy every second of her happiness.

Clinic stats

Weight: 31 lbs 

WBC: 4.1

Hemoglobin: 10.9

ANC: 1.7

Platelets: 419,000

  Her levels look great and the Dr says that means she's not too sensitive to the oral chemo (6MP) she's taking, which is good.  And which also means...do I dare say it out loud?  We get next week off of clinic since she doesn't need any treatment and her numbers shouldn't change much before she would start the next phase so they shouldn't need to check her counts before her next tx day the beginning of July.  So we're hoping to enjoy this week off instead of having her admitted for two days like last time and moving :)  Two more weeks of oral chemo and she finishes this phase the 4th of July!  I plan on celebrating big!!

I better throw this picture in for good measure.  I thought it was so cute from one of our walks last week!  Can't wait to get her pictures back we had taken last Saturday!!

SIDENOTE:  I hope i don't sound negative in these posts I just want to accurately portray for our family in the future what these years were like with the good and the bad.  We have seen lots of both and I hope to be able to remember accurately years down the road and be able to relate to Gracie how it was for her, and how truly amazing she is! 

Father's Day Tribute

Well we happen to have a lot of awesome Dad's around here!  Mine is incredible and Todd's is great too!  And lets just say Gracie definately hit the jackpot with her Dad!  Let's see...for starters the last two nights he has spent sleeping on the ground with Gracie because the blow up mattress they've been sharing broke a leak.(hopefully it will be back in order tonight we tried our hand at fixing it last night) She will only sleep in her crib for a few hours at the beginning of the night and then wants to sleep with Dad in the extra room.  Yes I did agree to let her try sleeping between us, but apparently our awesome comfy bed doesn't cut it for her.  Or maybe she just wants Dad to herself!  I'm pretty sure that alone puts him pretty high on the Dad meter...and extremely high on the husband meter! 
Here are some pictures from our Sunday walk on Father's Day

Gracie and Dad

She's staring down the ball in a  neighbors yard, she wanted it SO bad!

Pulling apart the flower we picked

Feeding the ducks

Eating the ducks bread!  She still doesn't like bread...unless shes' supposed to be feeding it to the ducks!

He is so involved in everything that happens with her and is very protective of her.  I think he goes a little crazy on clinic days when he's at his rotations and doesn't get any type of decent update from me until it's all done and we're home, or he's home.  And as soon as he gets home, her face lights up and if he tries to escape her for a second to shower or change she is not happy!  He's the kind of Dad that actually likes to get down on the ground and play as much as she does...and that is how we got our Daddy's girl!  Most the time he's home is dedicated to being a great Dad!  He takes her outside to play and swing or chases her around the house.  Then of course he usually feeds her and offers her drinks as often as possible these days ( to keep her from being dehydrated), and yes he even changes her chemo diapers(something I don't think you could get him to do for anyone else) almost all the time he's home.  In fact Sunday-yes Father's Day I realized at the end of the day I hadn't changed a single diaper, and not a single complaint from him!  Although once I realized I felt a little guilty for slacking on Father's Day, but true to his nature he really truly didn't mind a bit.  There's a million more reasons why we're so lucky, but we'll leave it at that!   We are just so grateful to have such an awesome Dad and husband and such fabulous grandpa's for Gracie! 

Flying solo

Well, it's our first week alone in lets just say a LONG time!  We were amazingly blessed to have both our mom's take long turns coming out to help us, both our Dad's for a time too and my Aunt Lisa.  It was such a blessing to have each of them here and all the help they gave us.  We couldn't have made it without them! 
But we are happy to say we've mostly through our first week with just the three of us and doing pretty well!  And as much as we love all of you who came to stay it's been nice to have a little time just us before we hit it hard again with round two when our sweet little boy joins and we're helpless once again:)
This week on Tuesday Gracie had her 6th spinal tap!  I've never even had one in my entire life so it's almost unbelievable to me that at 19 months she's already had 6!  Next Tuesday we have number 7 and I like a good check off list so I'm definately checking off each treatment and I'm always very happy to have another one over with.  One of the pros of Gracie's age I think is that she is so innocent, that the day before I'm always dreading the fasting and the treatments and she is thankfully able to enjoy the day as if nothing was coming.  Of course this comes with a downside when she's unpleasantly surprised to be at the clinic again with nurses coming at her again.  I always wish I could just sit down and explain to her what's happening because she gets so upset and scared at times and it's often because she doesn't understand what they are doing. 
This Tuesday went really well overall.  I had a very nice friend from the ward come with me and it's always nice to have the extra set of hands.  Gracie did great on the drive and with the fast, the bad part came when they had to access the port for the first time.  The bandage and steri strip was still in place from her surgery and if there's anything she hates it's having her bandages/dressings taken off even with the special stuff they have to help it come off easily.  She screamed and screamed until she was sweating pretty good so when they tried to put the numbing cream on prior to accessing her the dressing they tried to cover the cream with wouldn't stick with all the sweat.   Of course putting another dressing on (it's basically like plastic wrap) was very upsetting so after the 2nd dressing we decided not to try another.  They even brought out an older patient to try to show her and explain that it didn't hurt, but she wasn't having it.  I'm hoping next week will go better if I put the cream on at home before we leave...although I don't think she'll be very happy with me when I put it on.  Todd has started asking her where her port is and she seems to know where it is now, she points to her chest in the area where her port is. 
She was a CHAMP with vitals they got her blood pressure without even a peep I couldn't believe when a number came up so quickly and she hadn't cried at all, because it usually is so upsetting and takes forever then comes up with an error b/c she's screaming so hard.  I'm hoping she's adjusting to it and it can become less traumatic for her over time.  She did GREAT with the spinal tap and the anesthesia nurse was in love with her.  She wanted her to wake up so she could see how cute she was again.  Of course she was giving everyone stickers before and then after for the first time she was happy and funny instead of cranky and mad.  It made it so much better for everyone.  I always feel bad when she gets out so upset, and I'm happy to see it's possible to know be upset after each sedation.  Of course her post sedation treat was ready and waiting for her.  It's become tradition, she gets her much desired Cup-O-Noodles after each sedation! 
Her levels still look great and her stats for this week were:

Weight: 31 lbs

WBC: 7.0

Platelets: 374,000

Hemoglobin: 10.8

ANC: around 3.3

Here's the new view from my front window!  Hard to beat I must say!  Gracie still can't wait to spend all night with her Dad when he gets home...and it looks like he enjoys it quite a bit too!  I'm a lucky mama!

A little down time with my babies:) 

Isn't she just so sweet when she sleeps?

Signing...she loves it and we think it's so cute and extremely helpful!  Time for a cracker:)

Her cheesy smile at my request!

Blowing bubbles outside.  I just love that little girl!

Trying to get to the backyard to SWING!