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! 



These days

Our house has looked a little more normal these days!  Toys scattered all over the floor is exactly how I like it to look now.  She has been very interested in playing with her toys and it's lots of fun to watch.  Grandma Bucher has kept her busy and entertained this week with lots of blocks and other toys. 

Her new favorite thing is the swing in the backyard.  Her own little swing that I don't have to worry about taking her to the park or who might be there, or who was in the swing last and what germs are lingering around such a public place:)  She will stay in it for hours if we let her.   She has never wanted to get out yet, unless you consider falling asleep in it a request to get out, but I think Grandma would say it was more fighting to stay in.  Got a bunch of cute shots of her swinging, posted a bunch for Grandma and anyone else that thinks she's as cute as I do and could look at her or pictures of her all day long. 

These little flowers are a reminder of how grateful I am to have her out exploring and walking around by herself.  She picked these for me this week out in the yard and it was strangely sentimental just because she couldn't even walk for over a month.  And now she's walking all over again. 

One last swing with Grandma before she headed home again.  Thanks a million to both sets of parents for saving our lives and helping us when we really needed it.  We are so lucky to have parents that can drop and come like that.  Thanks to all the help we're all settled into our new home, into the 2nd phase of treatment and ready to attempt a couple months here alone (well, kind of with some help from friends and the ward) before we launch into round two with the new baby and another intense phase of treatment.

Pretzel time with Dad!

When all else fails for getting a child to eat, I guess the good old olive trick works!  As for how things are now...we live in a world of extremes.  We went from ravenously hungry to not wanting to eat or drink really.  So now we spend our day trying to get her to eat and drink.  She woke up (in our bed) this morning after a restless night for her with a pretty dry diaper.  Not exactly what any parent wants to see, but definately a contrast from last month and going through 3 overnight diapers each night and still soaking through and changing sheets regularly.  Luckily we were able to get her to drink a good amount of fluid through the morning and afternoon, otherwise it would have been back to the ER for hydration.  Lets see...for a few days she slept  a LOT we thought that might continue even having a 4 hours nap, but that doesn't seem to have changed she's had less than an hour nap so far today after her not very good night.  But, all in all she is much happier and doing a lot of things a normal toddler does.  I've given my crushing job to Todd as they don't want me crushing the oral chemo while being pregnant and now we get to wear gloves all month every time we change her diaper since she gets oral chemo daily.  Less regular meds though which is nice and we are finally starting to convince her that baths can be fun again after a month of baths with the line in her arm having to be wrapped and kept dry.  Her diaper rash is a million times better and maybe soon we can go back to using regular wipes instead of wetting paper towels...but I will probably be super cautious and just wait til the oral chemo is done since it can cause break down of the skin.  I NEVER want to go relive that rash and I'm sure Gracie feels the same way.  She still notices tiny tiny little things and the little chip in the bathtub will probably bother her every bath.  As well as the little piece of fuzz or hair on her finger or on Dad's chin.  Not sure what brought this on, but it started when all the treatment started. 

Clinic stats from June 7-her surgery appt.

Weight: pretty sure she was 32 lbs 11oz (can't find my paper to prove it though)-a significan drop for a week and a half.

WBC: 5.2

ANC: around 2.0

Hemoglobin: 11.0

Platelets: 329,000

I'll be interested to see how the new chemo will affect her levels this coming Tuesday.  Wish us luck on our first port access and another sedation.  Two more then we get a break for a month or so!  

Surgery day

Surgery day was long, if it wasn't for her it for sure was for me.  We woke her up at 6:00 am to feed her and gave her some ativan.   True to herself she fought it for five hours before caving in to a nap on the ride to the hospital.  This sedation was a little different than the others, usually we get to carry her into the sedation room and they give some sleep meds in her iv while we're holding her and she pretty well nods off before we're gone and then they come get us before she wakes up so we can be there.  Not in the OR, they gave her some meds to try to calm her, but we couldn't carry her into the room so we had to let total strangers take her from our arms as she screamed "dada" and we walked away from her.  Yep, it was awful.  Hope I never have to do it again. 

Good news is she made it through the surgery with no complications and her PICC line is finally gone and her port in place.  If a picture can prove anything, this one proves we have a Daddy's girl.  The nurse automatically assumed after surgery Gracie would want Mom...until she immediately reached for her Daddy.  Which I have accepted as a blessing with my pregnant body at this point, and especially since this is the first visit (other than hospital stays) that Todd has been able to go to due to rotations.  She has her order of people and luckily if number one is not present she will usually accept number two as number one!

1. Dad

2. Mom

3. Grandma... you get the picture

After we got out of the OR we hurried upstairs for the rest of her treatment for the day.  Which was luckily just a blood draw and some IV chemo (VC) which is only about a 5 min drip.  Then we picked up our new meds from the pharmacy and headed home.  We have learned to always pick up her new meds at the hospital pharmacy because every time I haven't I find out that no other pharmacy carries drugs for pediatric cancer patients.  Just a  handy tip in case any of you ever wanted to know not to get oxycodone in an infant dose at a regular pharmacy (unless you want to wait 4 days). 

Here she is a with her fancy bandaids a couple days after surgery.  Believe it or not she hasn't ripped them off yet. 

And there it is close up, her new port.  I am a little nervous for Tuesday to see how she reacts to the new process of having it accessed.  Of course I myself wouldn't be thrilled to see someone coming at me with a needle each week.  I'm hoping she will adjust a little better to clinic now that she's off the steroids and not having surgery.  Last time she was so hysterical they couldn't get her blood pressure until she was sedated, when they tried her arm turned purple.  What do we take from this...she's a fighter!  So despite the stress I feel watching her so upset each week, nothings going to keep her from fighting and winning this battle.  You're still my little hero. 

The good and the bad

Well the good news continues...so I posted a cute video of Gracie walking all by herself yesterday and playing outside to counteract the negative feelings I have for tomorrow. Actually the compute spent the last 2 hours trying to download the video and has found no success as of yet so I quit trying.  If anyone has advice on how to upload videos on here I would gladly accept! 

Anyways, the hospital called a couple hours ago to inform us that her checkin time for surgery was 11:00 am ...Ok 11 we've done that before but actually surgery is at 12:30.  The woman that called wanted me to start Gracie fasting at 5 am just in case the Dr was ready for her a little early...yes I'm sure that the Dr will be ready an hour and a half before scheduled and surgery will actually start the second we check in downstairs before even making it up to the surgical floor.  Thank heavens for our fabulous oncology dr's and nurses that actually care about Gracie and try to make things as good as possible instead of just checking her off as another patient that needs to follow protocol. Hopefully this will be the only surgery needed not done on the oncology floor.  So after a lot of talking I convinced that woman that Gracie didn't need to start fasting until 6:30 am and that she could have clear liquids until 10:30 instead of 9 seeing as Gracie was the Dr's first scheduled surgery of that day and he would be in clinic all morning and most liking having his lunch break right before coming into surgery and knowing Dr's like I do now he wouldn't want to leave lunch early to surprise his first scheduled surgery of the day by being an hour early.  So tomorrow we dread...another long day of fasting for Gracie and a little bit of a scary surgery for us-the long list of risks they gave me was enough to make my stomach churn and make me scared enough to know I would never let them do this surgery if it wasn't the only option for continuing these life saving treatments.  So tonight I'll try to enjoy my last few moments of happy Gracie before an awful morning and a painful afternoon and next few days from her incisions.  Her sweet innocence gives me guilt knowing what she doesn't and having no way to prevent it. 

She has actually been eating some fruit again!  Yesterday she ate some peaches, watermelon and a few slices of a clementine!  Here she is enjoying her watermelon and her cute water bottle!

Here is a typical face for her these days.  It's about all we saw on steroids and now it's either this or smiling and laughter!  Seems to be more smiles than scowls, but there's not much in between :) And despite the look on her face she does LOVE our new stroller!

Smiling back at Dad during out walk!  We just love our Gracie Girl!

Quite a week

Our week break from treatment ended up not being much of a break for anyone.  But we are happy to say that we have in fact survived this event packed week!  Monday night all seemed fairly normal...or normal to us now Gracie was still up late at night in fact I had gone to clean our new house and got home around 10:30 pm to find her having a snack in her highchair.  I tried a new trick when Todd fell asleep exhausted at 11:00 and put our portable DVD player in her room to keep her entertained so I could have a much needed shower.  She finally nodded off at 2:00 am....and at 2:20 am she wakes up, not a big surprise there, but with croup!  We call the oncology fellow on call and they say as long as she's breathing ok and no fever we can keep her at home.  So we wait... and she keeps waking herself up regularly with coughing spells and we try all the croup tricks we know so well from prior experience and around 4:30 she's having a hard time breathing so we call again and they say to bring her in to the ER they'll let them know she's coming.  It was a long awful drive which proved to be true for the rest of the night and into the afternoon.  She absolutely HATES hospitals now and any nurses and drs that try to come near her.  We tried to help give her the first breathing treatment as she moved and flailed her body all over the place (they are always impressed with how hard she fights everything) then when they had to put the third treatment in right in a row they got the mask out!  Oh yes, she LOVES masks.  It was awful only to be compared to our first night in the ER with her before she was diagnosed.  She screamed and screamed and ripped the mask off over and over while we tried our best to hold her down and hold the mask on.  They had given her a dose of steroid right before (yes wonderful more steroid!) so of course after all the fighting she threw up all over her PICC line, blanket and Todd!  After a lot of effort and rocking we finally got her to fall asleep for a short time.  The nurse said we needed to give her another dose of steroid since she threw it up and if she threw it up again they would do it IM.  Thank heavens for my smart husband who immediately reminded them she has a PICC line and we should just give it IV which of course went much better than either of the other options.  Two more breathing treatments with a mask and they still thought she sounded to bad to go up to the oncology floor so the Dr from the Pediatric ICU came down to listen to her and decided she needed to be with them in the PICU b/c oncology would just send her down anyways.  So up to the PICU we  went and they put her NPO (nothing by  mouth) immediately and said it would probably last until about 4pm.  Todd had them send the Dr in and convinced her that she would be ok to drink clear liquids but they wouldn't budge on the food in case they needed to intubate her which we knew she wasn't bad enough to need. They gave her some Ativan because they needed to change her PICC dressing after she threw up on it.  And of course she hates her dressing changes they have to rip all the tape off her and it really hurts her.  They got it done and the nurse tells us that she can't get the drip to flow in and they will probably have to take it off to look at it.  YUCK, luckily the PICC nurses came in and got it working without removing any of the tape there was just a little kink. 
Around 4pm we made it up to Oncology and they had told us she would be able to eat once she got up there but they hadn't ordered her off npo so we couldn't order food for her I had the nurse get me some cereal and she ate it up along with some milk, poor thing.  Of course we were all exhausted after another night of no sleep and they said we needed to stay the night.  Todd had to go to his site the next day since he had missed the day so my Mom came to stay after they helped move a load of boxes to our new house with the help from our awesome home teacher and his sons and a good friend of ours. 
Gracie was not happy to be there and also not happy to be on steroids again and threw some pretty good tantrums and it took a lot of work to get her to sleep again but luckily around 12:30 am she nodded off and slept next to my Mom for about 4 hours while I laid down on the super comfy window set:) proved to be comfy enough from my lack asleep because I think I fell sound asleep for about 3 hours. 
Luckily they let released us by about 11:30 the next morning and we were home bound just in time to move.  I went to work packing as the rain started POURING!  I prayed pretty hard and my prayers were answered it cleared enough for us to get everything loaded and into the truck with some more amazing help from the men in our ward.  THANK YOU!!  They even had to help me with my last minute unorganized packing from spending the last 2 days in the hospital.  That night as soon as everything was unloaded and the main stuff set up (beds/crib) I zonked out for night and Grandma Lesli took Gracie for the night...and I believe she was up for quite a while.  The next day was lots of unpacking and other fun with moving!  I even had a friend come do my decorating for and had it down LONG before the rest of the house was unpacked or organized!  A dream come true in my world I get so stressed out with decorating and it takes me weeks if not months!  Friday morning more fabulous friends from the ward showed up and helped us deep clean the old apartment.  We had it done within 2-3 hours and it would have taken me all day for sure especially with this belly that seem to keep growing!  What can I say except THANK YOU THANK YOU to all you amazing women!  Todd's Mom took care of Gracie and kept her safe and fed and happy while my parents helped with all kinds of odds and ends of moving, unpacking, cleaning and other things.  We made it through what seemed to be an impossible week and are starting to reap the benefits of enjoying our new place! 
Gracie has been a true joy since we got here and we think she even likes it here better too! Wish I had some pictures to post, but somehow I didn't get a single picture in this week once we hit the hospital :) 

She has kept us all in good spirits with what seems to be never ending laughter!  She seems to be thoroughly enjoying life now that she knows just how hard it can be.  Almost everything makes her laugh now and we love every second of it.  She has even been doing lots of walking!  June 4, 2011 turns out to be another monumental day in Gracie's life she took her first steps alone...for the second time!  It is so wonderful to see her walking again and exploring and playing like she used to.  We also got a new double stroller which she loves and both times we have taken her on walks in it has fallen asleep!  Yep, it's pretty much the perfect stroller...no buyers remorse here! 

Tuesday is going to be another rough day for Gracie, she has her surgery scheduled to get her port placed and another spinal tap, then afterward we go up to get some IV chemo and she starts daily oral chemo for the month.  We're hoping to still keep our Gracie, but think she'll probably be under the weather this week again.  But, we are really hoping they will do the surgery since it was already put off a week and a half because all the surgeons took off Thursday-Monday for memorial day and we couldn't put off her last spinal tap/bone marrow aspiration until the next Tuesday.  They are going to be a lot more cautious with putting her under for the port because they have to intubate her and paralyze her which they don't do for her regular sedations.  It's all up to the anesthesiologist Tuesday morning and it's a little less certain with her remaining cough and recent croup, but we hope to get it over and done and get her PICC line out so she can hopefully enjoy a bath for the first time in over a month. 

Hopefully I'll get some pictures soon, she has lost at least a couple pounds and it smiling and happy quite often now!  Thank you to everyone that has helped us make it through this week, we wish we could do it alone but know we can't and are forever grateful for those who are helping us make it through!