Happy Easter!

We had a fantastic time finding eggs this morning in the room.  It's amazing how many times you can take them out of the basket she is carrying and rehide them.  She loved this so much she actually wanted to hide them for Daddy herself.  All in all a very successful Easter morning, mostly thanks to Nana. 

Yesterday we had a big day out and went to the American Girl Store where Itty Bitty got a new swimsuit and Avery got the matching one.  This place was packed and filled with mom's and daughters, and bag-carrying dads who were thrilled to be there.  Jeremy was very accomadating and took part in the tour of the 3 level store.    Afterwards we walked down to 34th street and found Macy's.  This place is even BIGGER and CRAZIER -- with a million people in it and a Starbucks on every level.  We were floored by the amount of items they had in this place!  We were exhausted after this and had to go back to Ronald McDonald for a nap! 

We said goodbye to Nana this afternoon....very sad for both of us.  And in an hour we'll repeat the process when I leave.  I am not looking forward to this and not sure how well it's going to be handled on both ends.  But we'll make it through it - always do.  In the mean time, I need to get back to snuggling and playing with my girl. I can't promise you'll see any updates this week from NYC -- Jeremy isn't exactly into the Blog thing...but we'll see.  I will try my best to update from home.  Avery will have the flow study repeated this week -- most likely on Tuesday and Wednesday but the rest of the week she will get to explore more of the big apple with Grandma Lippold and Daddy.  Yay!

Jenn

Surgery a Success

Surgery last night started at 6pm.  We actually got to take her into the OR ourselves and put her on the table.  It was rather creepy seeing them prepare to cut open her head, but at the same time gave us some comfort of knowing the unknown.  We sat with her until the Neurosurgeons arrived and then went out to wait.  They gave her silly gas which of course made her loopy - very comical in the situation.  It was good to see that as she was upset by the gowned up nurses and mom and dad prior to getting the good stuff.  I secretly hoped that some of the gas would escape out and make me a little loopy too - definitely would have made the wait less stressful.  The Dr's finally finished about 8 pm and came out to tell us it was a difficult surgery but it was a success.  The good news is no one tattled on me this time for having water in the waiting room.  Apparently this hospital is a little more advanced in terms of rules than others. 

Daddy spent the night at the hospital with her as I am at my breaking point.  The PICU is ridiculously loud and I haven't slept well in a week.  I thought it only fair to allow dad to experience the same thing - if only for a night.  I didn't feel so bad when he told me at 1:30 am she woke up starving and he argued with the dr's to let her eat.  Apparently they had her NPO again as she needs an MRI today.  Course they couldn't  tell him when the MRI would be.  At this point we still don't know.  Organization and communication are severly lacking in this hospital. 

Her last dose of post surgery antibiotic is scheduled for 7pm, so the hope is to be out of here by 8:30pm or so.  Just in time to go back to the Ronald McDonald house and pop in the newest Harry Potter DVD and make some popcorn, her favorite.  Tomorrow we plan on taking her to Macy's and the American Girl Store for some much needed fun!

Jenn

Planning once again fails...

Per usual, my attempts at planning have once again failed.  Only this time it is for the best.  Avery's MRI this morning showed an increase in fluid in her ventricles.  That means she will have brain surgery tomorrow afternoon. I was really doubtful that this would happen and had just planned on getting discharged and coming in next week to start over.  However, her head had other ideas!  This is great for me as I will be here for the surgery rather than at home.  Sucks for Nana though as she flew all the way out to see the Big Apple with her Tinkerbelle and instead spent the entire time in the hospital.  Gives us a reason to come back I guess. 

Since the Neurosurgeon was on the same train with me, she was not slotted for a surgery time until today.  This means she is an add on to the schedule tomorrow and will go last.  NPO for the entire day is what we are looking at.  Not that she hasn't done it before.  I have asked for her to be able to eat some breakfast, even if that means getting her up at 5 am to do so.  We'll see what they say.  The surgery will be done by Dr Greenfield and his colleague, which means she gets 2 surgeons for this surgery.  As much as we like to collect Neurosurgeons, we have not actually ever had 2 operate on her at the same time.  This is a big deal.  While not the same as the tumor resection, this is definitely a scary operation for her to have.  She is once again going to amaze us all I'm sure, but it makes me nervous that she is going to wake up with a blank stare like she did the first time.  It tooks months to regain whatever it was that she had been before that and with our future uncertain, we don't have the time to wait for that to come back.  Don't get me wrong, she is going to be fine.  A surgery is not the end for someone who has put in this much blood, sweat and tears, but it makes me nervous nonetheless. 

Today we met Abigail Breslin -- the voice of Pricilla on the new movie Rango and we also watched the movie here at the hospital (its only in theaters now).  That was way cool and Avery really liked her.  Yesterday we found out that video from the Easter Bunny visit was shown on the local news....and of course Avery was on it.  So yesterday she became a star and today she met one.  Overall, a much more hooked up entertainment segment in this hospital than any of the others.  New York has the convenience of Movie Stars I guess. 

Avery's eyelashes have made their debut.  Another week and she will have them back.  Hair and eyebrows are starting, but definitely not as far along in the growth process as the eyelashes.  This is very exciting for us.  Soon we'll have a blonde buzz cut - just in time for summer again!  Her face is starting to fill out I have noticed, although her wait remains just under 23 lbs. The food in this hospital is terrible and the only thing she will eat is a dinner roll dipped in peanut butter.  Some care packages have arrived and we now have a much better selection for snacking!  Thank you to all that have sent or are sending things.  This will help tremendously over the next 2 months as this city is expensive!!  Avery has really figured out how to work the parents and nana now.  She gets mad at me and reaches for Nana.  Seriously kid?  Rules are never going to be established at this rate!

All in all, a quiet day for us here.  We played a lot and mingled with other kids.  We even took a sponge bath, which was much needed after a week of not bathing.  I will update as soon as the surgery is done tomorrow night, but it will most likely be late in the evening.  Please pray extra tonight for smooth sailing through the Ventricleoscopy and steady hands for the surgeons.  I'm not sure this type of procedure is as easy as Dr McDreamy makes it look on Grey's. 

Jenn

Avery has an MRI scheduled for tomorrow morning at 7:30 am.  Once we get the results of this we will find out whether or not we are going to get discharged for the weekend or have surgery on Thursday.  We have a feeling we will get discharged as we don't think the ventricles have grown in the last day if they didn't grow at all in 3 days.  The nice thing is that we will get out of here and get to spend some time with Nana at the American Girl Store.  The plan then will be to come back in on Monday for surgery to pull her shunt tubing out of her chest and clamp it.  A day or two later her ventricles will fill like needed and we can proceed with the big surgery.  I won't be here for this - which is a major downside for doing things next week, but as we all know my plans never work out the way I want them to.  Course I am planning for discharge tomorrow, so maybe they will end up not discharging and moving forward with surgery Thursday. 

Avery is feeling great and making lots of friends on the new floor.  She even had PICU nurses come down to visit her today. She met the Easter Bunny and some NYC firefighters today.  She did not like the Easter Bunny at all -- He and Santa rank up there as "scary but mezmirizing."  She also saw a magic show this afternoon that she loved.  All in all, a much better experience by far over here on the general peds floor of the hospital.  She just discovered Nana's lipstick...oh oh.  Gotta go!

Jenn

Surgery Cancelled

After a rough few days in a rather ridiculous hospital, Avery will not be having surgery today.  We were admitted on Saturday with the plan to enlarge her ventricles by slowly shutting off the flow of her shunt.  However, after an MRI this am we discovered that the ventricle sizes have not changed a bit.  This is perplexing to the surgeon and us.  In theory if your drain is clogged and you shut off the hose you have running out of the sink to drain the water, than the water should just build up in the sink.  This isn't happening, so now the question is  is there a blockage?  At this point we are not certain what they want to do and are waiting for the team to discuss our options and make a decision as to what the best thing is to do moving forward.  Surgery without enlarged ventricles is much more invasive and comes with a higher mortality rate.  We are really hoping that other options are a better fit and that she doesn't have to once again go under the knife.  As we hear more I will keep you posted.

In the mean time Avery has had a crappy few days.  The hospital is lacking in food for kids, activities for kids, and nurses that regularly access ports.  As a result, they attempted to access the poor kid 3 times, with 3 different nurses last night and all failed.  This of course left us with a kid that screams when you go at her port.  Thanks people.  She never even flinched prior and now you've ruined that.  They then of course put an iv in her hand -- which sucks when all you can do is crawl.  Then the anesthesia team didn't clamp this line after her MRI and as a result it clotted....meaning it had to be pulled out.  So now we have no line and in the event that she needs to be hooked up for any reason -- we have to go through all that once again.  Lovely. 
Since they decided to first access her at 9 pm at night, and we had all the drama we did - it meant Avery didn't go to bed until almost 1 am.  Guess what time Neuro makes rounds?  4 am!  And they wake you up for this.  And then again at 5 am ...and 6:15 am....So needless to say she way pretty pissed when she woke up from the MRI.  Good thing she doesn't hold grudges.  Unfortunate for the staff that mommy does.  Luckily Nana is here now to help Mommy in the Psycho Mommy state  - so I might not be so mean to everyone - can't promise that though.  On a good note, we really like our Neurosurgeon.  He appears to be very intelligent and confident and looking out for Avery.  I guess in the big scheme of things, he's the one you want to be good most of all.  

The picture was taken prior to her MRI - they pasted these gems on her head to use as markers in the MRI and surgery....this was one of our wake up calls at 6:15 am.  Didn't seem to bother her though.

Jenn

Our First Week in NYC

Change of Plans

We received some disappointing news yesterday from the Drs.  After the flow study scan yesterday they were able to confirm that Avery has an obstruction (most likely scar tissue)  in her ventricles which are causing her CSF to not circulate from the brain to the spine.  The shunt has been doing its job well is the positive thing.  In order for the clinical trial to be effective, the fluid must circulate between head and spine.  Luckily, the neurosurgeon at Cornell in NYC is confident that we can do surgery to correct this.  The plan is to go in tomorrow morning and spend the weekend allowing her ventricles to fill with fluid.  Right now, the shunt has left them very small and as a result do not allow for much room to manuever when in the brain.  If we change the flow on her shunt, we can back up some of the fluid - expanding that area a little and allowing for the camera to be inserted for surgery.  Monday morning they will do an MRI to confirm that she has indeed done this and then she will  be wheeled directly into surgery.  The surgery will include them drilling a small hole on the top of her head and pushing a camera down into the hole towards the 3rd ventricle.  Once in, the neurosurgeon will create a hole in the wall of the ventricle that will act as a new pathway for the fluid  to circulate.  All in all, a small brain surgery by far -- but another brain surgery nonetheless.  Recovery time should be minimal - 1-2 days.  After they do this, we will need to repeat the 2 day flow study to ensure that the surgery has corrected the blockage issue. 

This week has been much more busy than we had anticipated.  A lot of waiting around, and of course a lot of walking.  Memorial Sloan Kettering doesn't appear to have the organization that St Jude has, but it does appear to be a great hospital.  We are comfortable with Dr Kramer and also with the Neurosurgeon that we met today.  Please pray that our comfort level turns into an uneventful surgery and a positive Flow Study for Avery next week. 

Although obviously from out of town to any New Yorker, we have managed to find our way around this city pretty well.  We learned some important lessons about Cabbies and grocery stores this week...never get in a cab that isn't yellow -- they are crazy and unlicensed.  Grocery stores in NYC take all the crap we buy in bulk, empty it out of its carton and mark up the price 150%.  Do you know what we paid for 1 Capri Sun juice box?!  99 cents!!  Needless to say, we may need some care packages with toddler snacks in them.  The walking is the best.  We walk about 5 blocks to the hospital each day and Central Park is only about 8 blocks away.  We have walked a lot this week and really enjoyed the sights.  We have been to Central Park, FAO Schwarz, Radio City Music Hall, and Rockefeller Center.  And still there is so much to see!  We haven't tried the subway yet, as the lines don't run on the East Side as much, but maybe in the next 2 weeks we will venture over. 

Avery has completed the transformation into the Terrible 2's.  She officially is unreasonable during a tantrum, and has taken to ripping off her glasses and throwing them.  The funny thing is she will stop the antics to give us both hugs if asked.  Once done, she then goes back to fighting us to get down or screaming her high pitched neuroscream.  Although such sign of relief for us, I really don't know how the rest of you parents survived this stage with your own children without the "she has cancer - let it go"  mind set that Jeremy and I have ingrained in our heads.  I'm just saying. WOW.  Now this isn't a 24/7 type attitude that we see, but it definitely rears it's ugly head a few times a day.  Oh and eating out is no longer the easy task it has always been for us in the past.  We now understand why no one eats out when they have a 2-3 yr old. 


The Ronald McDonald House is a very nice facility.  We haven't spent a lot of time exploring it as we have done a lot of exploring in the city instead.  They have a set up very similar to the Target House with dinners and activities for the kids and families.  It will be a nice place to spend time over the next few weeks when we need to escape the hustle and bustle of the city. 

I've asked my brother to tweak the blog a little -- jazz it up so to say, so you may see some changes over the next few weeks.  Eventually we'll figure out what fits.  Hopefully everyone noticed that I finally found out how to get auto messages sent when I enter a new post.  Sorry that took so long, I am not exactly savvy on the blog thing yet. 

Please pray for Avery as she once again goes under the knife for her head.  Pray that there are no complications and that we are able to proceed as planned to solidify the outcome that we already know is coming -- remission.  The next few weeks are going to tough on us as a family as Jeremy and I trade places each week.  We won't spend any time together unfortunately and that is going to be a change from the last time.  We are really trying to avoid missing as much time away from work as possible and that means flying on the weekends only.  Thanks to all that are helping us by taking us to the airport, visiting, watching Cy & Jersey and collecting the mail.  And also a big thanks to everyone for the prayers and support.  This is one more little bump in our journey but nothing we can't handle.

Jenn

Plane Ride

Well Avery did not win the "best kid on the plane" award today.  She was not happy that the flight attendant wanted her to sit in her seat with her seat belt on for the whole ride and of course we were sitting at the back of the plane with the woman so we had to be good.  Luckily we only annoyed the few people around us as the noise in a plane is horribly loud.  After a 30 min wait on the tarmack and a 45 min circling around NY - we finally made it to the City.  We stuffed ourselves - and I mean stuffed - into a cab and headed for the Upper East Side of Manhattan.  Considering we really had no idea where we were going, it was nice that the cab offered a commercial screen with a map on it -- literally you can follow your route and see where you are going!  And you can pay with a card!! This would have been really nice a few years back when we had to bribe the cabbies in KC to take us to an ATM on the way home to get cash, and throw in a McD's cheeseburger as well. 

Ronald McDonald House is a really nice facility and our room is perfect for what we need.  We have a tv and a bed and a shower - what more do you need?  There is a playroom for Avery and a large communal room to just hang out in.  They have 2 patios, a music room, and small greenhouse.  Already Avery has begun stalking some new friends...older ones, but friends none the less.  These poor kids were trying to have a very adult game of dominoes, complete with laughing, texting and swearing whenever it seemed they could use the word correctly and Avery busted in the game.  Nothing better than a snoopy 2 year old kid wanting to hang out and ruin your teenage hang out.  The kids were very sweet though and let her hang out with them for a few minutes - which she absolutely loved.  Man she needs a sibling. 

Tomorrow we have our first appt at Memorial Sloan Kettering.  We walked down towards the hospital and it was actually rather close -- only about 4-5 blocks.  We need to be there at 1:30 tomorrow afternoon and I don't believe we will have to be there for too long.  Wednesday and Thursday we will have to go back as well to do the flow study on her CSF.  They will check her flow and make sure things are moving appropriately for the injection to be effective.  They will also do a dosage check at some point, but not sure when that is going to happen. 

We have a list of things we want to do while we are here in the city so we need to make a plan of where everything is and when we want to see it.  Daddy is not as interested in the American Doll Store and Macy's as we are.  It's been a long day and munchkin is getting cranky, which means it's time for bed.  

Jenn

Tomorrow we leave for New York at 7am -- bright and early.  A big thanks to Brian for taking us to the airport at 4:45am.  We are anxious to go and excited to be nearing completion of this treatment.  Who knows where the road will lead after this...hopefully somewhere slightly more normal.  Tantrums and giggles, walking and talking are the places we really are looking forward to.  This has been a tough road, but one that is making us stronger as a family, as a couple and as a community.  The lessons this little girl has taught all of us are numerous and reach far and wide.  Our one hope is that this experience has helped all of you in some small way.  The positives that have come out of this are many in our book, with one really solid negative of course.  Overlooking the nasty Cancer piece of the journey has allowed us to focus on some tremendous friendships, some amazing charitable opportunities, and God.  All of these pieces had been somewhat neglected before we started down this road and we are very happy that we've rearranged those priorities to where they need to be.  Thank you to you all for following us and supporting us as we forge on in the fight.  Avery is leading us as always, with a smile. 



Jenn

Surgery

Avery went in for surgery this morning - bright and early - we had to be here at 5:30 am! Her surgery was at 8:30 and she got out of recovery around 10 am. She did fine and the surgeon said the valve placement on the shunt was smooth. They reopened the scar near her shunt and increased the opening by a few inches. We haven't seen it yet as it is nicely bandaged, but later this week we will take the bandage off and see the handiwork and all those new stitches. The new valve will stick out a bit more than the original valve did so you may actually notice this one without us pointing it out. This valve will allow us to slow the flow of fluid going into her tummy area which will give the new medicine time to circulate and kill off cells. We are patiently waiting for Avery's eyelashes to grow back in as this is the first sign on hair growing back. We are hoping that by the time we get back from NY she has a nice little buzz going on that cute head of hers. Avery woke up pretty irritated with everyone, as she usually does when they give her the gas. After we got her upstairs in a room and settled a bit she fell back asleep and slept for most of the afternoon. When she finally woke up she was back to her chipper self, giggling and laughing and wanting to run. The nurses have all commented on how great she looks already and how fast she bounced back. Apparently they've not been following her blog. The kid bounces back faster than a yo-yo. Tomorrow we are hoping to get discharged late morning and get on the road. The drive is a long one and she is not going to be too happy after having to spend all day in a hospital room today. Once we get home it will be a quick unpack-laundry-repack. Our flight leaves at 7am so we are heading to the airport early! It was nice to see our friends and the Drs & Nurses at St Jude. Our friend Belle started the ICE chemo regimen that Avery just finished. We pray that her body takes it as well as Avery's did and that it helps her achieve that next birthday that she needs before they do radiation. Colin is toodling around on the slickest blue walker you have ever seen and he looks absolutely amazing. Although we didn't run into KK, I know she had clear scans and is doing very well at home. We didn't get to see Megan - as she is not coming until Tuesday of this next week, but she is doing very well and growing like a weed. The plan is to return in 3 months for follow up scans. Well....this momma is tired....4:30 was early this morning. So next step is to kick Daddy back to the Grizzly House and get the munchkin to sleep. Hoping this won't be a huge battle tonight as she snuggled with Jeremy and watched a little AFV, which resulted in both of them snoozing for a bit. Thank you for all the messages and prayers this week. It was a tremendously stressful one and we really needed the extra support. Next week's stress will be high as well, but mostly because a couple of midwesterners are moving to the BIG CITY all alone...with a kid, and no clue where we are going. But like before -- we'll figure it out. We always do. Jenn

SCANXIETY

Avery's MRI results were inconclusive yesterday so we were waiting for the LP to further determine her results. The radiologist noticed an area at the base of her spine where it appeared to be slightly more highlighted than it had been 2 months ago. This can be caused by 2 things; appearance of cancer cells beginning to line the walls of the spine or just a variation in the length of time the dye contrast was allowed to sit and therefor it "glows" just a little brighter. The LP results came back this morning All Clear -- so the Dr's are going with option 2 - although they will continue to monitor that area closely moving forward.

Yesterday was a rough day on us. The what ifs and anxiety caused by waiting is excruciating. To think this is the path we will be on for the rest of our lives is overwhelming by far. I don't answer the phone or texts when we get in that position so to those of you that lacked a response from me - that is why. Jeremy however is a sucker for distractions and answers his no problem...just for future reference.

Avery is looking and feeling good today. We have an appointment with the Neurosurgeon this afternoon and then after that we are taking off for a day in Nashville. The Grand Ol Opry is calling our names and we thought we'd take advantage of the short drive. We are staying in a really large hotel with lots to do and a big pool. Avery is finally going to go swimming!

Keep the prayer coming!

Jenn

AVERY's WALK - JUNE 4th

More information was just shared on Avery's Walk on June 4th, 2011

Please check it out -- we'd love to celebrate our end of treatment with everyone!

http://www.walkforavery.com/

April 2011 St Jude Visit

Yesterday and today were pretty typical days for us here at St Jude. Yesterday she had her MRI, PT and OT follow ups, labs and a Neuro Oncology visit. She was a pistol...like she has been for the last few weeks. She wants down - she wants to walk - she wants to go this way and that - and let me tell you she is not quiet if you don't let her. The terrible 2's have reared their ugly head and with each temper tantrum, we quietly thank God that we get to experience these moments. Unreasonable, irritating, and completely illogical as they are -- they are also NORMAL. More than anything we'd love to have a little more of that word in our lives.

Today she had her ABR and LP, a eye Dr visit and a visit with Dr Armstrong. Results for the MRI and LP will be in tomorrow. Once we have those we will share. The Dr's have discussed with us and regardless of these results, we will continue down the path we are already on. This includes the Clinical Trial at Sloan Kettering. It's been a tough day today. We learned the prognosis of a child that was here with us last year is not good. The tumor is very quickly taking over his little body and although he is fighting with every ounce he can muster, they haven't given him long... Our hearts ache for this family. I can't pass the mom in the hall without crying and it is so completely devastating to know that there is not a single thing I can say to make her feel any better about things. All of us here know that the chances of losing a child are so very likely, but it doesn't make it any easier to deal with. As strong as each one of the parents of St Jude are when we return home to our family and friends, here we are allowed a little more freedom to grieve for the lot that life has thrown us. It sucks. Cancer sucks. There is just no better way to say it. IT SUCKS.

Surgery is scheduled for Friday. We have to be there at 7:30 am for admit and then it's a hurry up and wait game until Dr Boop is ready for us. Post Surgery she will be moved to the Neuro Floor and observed for 24 hours. If the surgery/recovery is done by 1pm then we will get released Saturday at 1pm. Regardless, we will be leaving Saturday (pending any complications). Sunday will be a big day of unpacking and repacking for our journey to NYC. Out flight leaves at 7 am on Monday morning. We are excited to see the big city and get a chance to hang out with one of our buddies from St Jude, Colin. We also are looking forward to meeting up with one of my close friends, Laura from high school and college that lives in the city. With a whole city full of walking to take on -- I think Avery is ready. Question is what will NY think of this absolutely adorable blue-eyed baldy from the Midwest with a definite plan of what she wants to do? I suggest getting out of the way City Slickers....


Jenn