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Sunday, March 28, 2010

Date Night

Thanks to a very thoughtful friend (maybe more than one) Jeremy and I were surprised to a night out on Saturday! Scott made reservations at a great restaurant in Memphis called Iris. We even dressed up a bit to make it a little more special! The food was amazing and we ate so much we actually had to come back after dinner due to a much needed unbottoning of the pants....surprise surprise, little miss Avery was still awake and hanging out with her buddy Scott. It was a much needed break and made us feel a little more normal. Thank you!!

Avery is getting really strong at pulling herself up now. The crawling stage may be skipped all together as she doesn't appear that interested in her knees. We'll see. She was able to play down in the play area a few times this week when we were inpatient and that helps in her strength training. She has a blast pulling herself up in the crib as well!

Aunt Jonnelle is arriving tomorrow and we can't wait! She is flying all the way from MN to see us. We personally think it has something to do with the nicer weather down here....giggle giggle. We will go back inpatient on Tuesday night and be there for the icky chemo drugs until Friday or Saturday. In the mean time, she has started the appetite inducing, Periactin and let me tell you that stuff works. She goes from normal to starving in 30 mins. Good for us as she is up to 8.4 kilos and we are going into the pukey stage. Hopefully we'll be able to manage the sick feeling enough for her to eat and maintain her weight this round. We'll see....if not, at least she is a little heavier than 2 weeks ago.

Well, off to bed we go....yes she is still up and sitting in my lap. 10:48 pm.

Love Jenn & Avery

Friday, March 26, 2010

Jeremy and Scott

Wednesday turned out to be a much better day. Avery started Chemo that afternoon and finished it up yesterday evening. She will continue with fluids until all is flushed out of her system. Hopefully we'll be able to leave at a decent time tomorrow.

Scott arrived on Wednesday evening and to my surprise took the bus to the hospital. The nurses were in shock by this as the bus is NOT the safest mode of transportation. But he arrived unscathed and camped out in the broom closet for the night. Yesterday I was able to slip back to Target house to shower and then Jeremy flew in around 7 pm. The boys stayed at the hospital last night with Avery and I slept at the Target first night away from her. I of course woke up from nightmares and decided maybe I'm not ok sleeping away from her.

Jeremy and Scott are headed to Beale street this afternoon to eat some fried hamburgers at Dyers. We went with Mom & John a few weeks ago, but Jeremy wasn't here so he missed out. Tonight we have some exciting plans to watch Happy Feet...silly I know but I really want to see it, so guess what -- Jeremy is so thrilled.

Miss Avery is doing great -- getting a little anxious as we don't have a mat to play on the floor on. She is much more active than the last time we were inpatient so we are having a tougher time keeping her happy as she wants to move! We did finally get out of Isolation last night so today we'll be able to roam a little, which will help. Kicker the dog was here last night and we were able to pet him, I think it was more therapeutic for me than Avery, but we sure enjoy that!

Well, I am going to sneak out and grab something to eat from the cafeteria while the munchkin is snoozing....more to come later!


Tuesday, March 23, 2010


Today was absolutely beautiful in Memphis! 74 degrees and sunny....even 71 degrees at 8:30 pm! Avery had a day of appts followed by being admitted for round 3 of Chemo.
I have to admit, I did not have the greatest of days myself. For those of you that really know me....ok if you know me even a little, you know I prefer the organized, planned out way of life. In St Jude world...that does not exist. Expectations are rarely met when you want them to be and your day is never what it was supposed to be. They hand out these nice little schedules every morning when you get to the hospital. These are meant to be used as GUIDELINES...not schedules, even though they call them schedules. This means that your 11:15 am appt to see the Dr prior to being admitted could very well take place at 2:45pm and no one will apologize or even acknowledge that they are seeing you 3.5 hrs after they guideline said you would. Uh...hello, I have a baby that needs a nap, playtime, bottle, diaper change -- insert whatever mommy thing you need to do that isn't always easy when you are stuck in a waiting room. I've gotten used to waiting as it is usually due to sick kiddos bumping your place in line when they are sick. I of course want the same privileges when Avery gets sick so I can handle this one. What I am having a terrible time trying to figure out is why they Scheduled us for admission at 1 pm and then tell me to come back at 8 pm. If I'd known that, maybe I wouldn't have stayed up late packing for our in patient trip when I could have come home after our appts and done it! ARGG.....needless to say, I had a few choice words with our interim Nurse Practitioner (poor thing) and then a couple of "crazy mom" conversations with the night nurses on the floor once I got here. I think I have officially pegged myself as the crabby, crazy mom whose kid is still awake at 11 pm...and yes she is still awake right now.

Good news is Avery is getting much stronger a matter of fact, she is attempting to crawl out of her crib at this very moment. Great. And I think Front Tooth #4 is coming in finally. She now loves Lay's South Carolina Tangy BBQ chips....her first actual potato chip. She has accumulated some new skills as well. She can wave bye bye, clap her hands together, and throw a nice little tantrum. All of these she does at random, never when we want her to of course!

To top off our great day we add an oopsy mistake that has landed us back in ISOLATION. Yes, apparently at the end of February when they finally cleared us of all our infections and let us out of isolation (after 18 days) they made a mistake. A culture grew and showed that she still tested positive for the Adno virus. Yes this was a month ago. And yes we've been walking around possibly infecting other kids...ok not really, it's in her poo and she luckily doesn't play with her poo and share it with friends so we should be fine. But still. Back into isolation we go. ugh. It's been a rough day for mommy.

On the bright side, Scott Steffes will be here tomorrow evening to help us out. This will be a much needed distraction for the both of us! It is also Aunt Nikki's Birthday....So Happy Birthday Aunt Nikki! We love you! It's hard to believe that we are starting round 3 already. We are a third of the way there, only 4 more months till we are able to come home to Kansas City and see everyone. Boy we can't wait!

Love from a slightly wound up,

Friday, March 19, 2010

Hearing Test and Lumbar Puncture

Today Avery went for her Lumbar Puncture and Hearing test. Thankfully the lumbar puncture was negative for cancer cells. Yea! She did however, have some hearing loss in her high pitch ranges. This wasn't a huge concern for the dr's as no one really cares to hear high pitch noises anyway, so they will continue with the same dosages of Vincristin as before. Avery's next round of Chemo starts on Tuesday evening as we go in for fluids, followed by 24 hrs of the Methotrexate. We should be in the hospital until Saturday. Jeremy and Grandma made it down here late last night and were just in time to take Avery to her 7:30am appt while I took Tara to the airport. Tara was a great help and a great cook! She even made pastries...with whipped cream! Avery really likes whipped cream! Thanks to her cookin' Avery was back up to 8.1 kilos today.

Tomorrow we are taking Grandma to Graceland....she is so excited! She was at his very last concert in Omaha in 1977 and she really loves him! It should be fun to get out and do something now that Avery's counts are back up. On Wednesday, Scott is coming from New York and then Jeremy will fly back in late Thursday night for the weekend. We'll be in patient most of the time but it will be nice to have someone at the hospital with me, especially when I desperately need to go back to the Target House and shower!


Wednesday, March 17, 2010

Happy St Patricks Day

Monday, March 15, 2010


I am happy to report that our early morning excursion...yes we had to be at the hospital at 7:15 am - OMG ....but we made it, was a success! The little stinker is such a pro at anesthesia that she wakes up immediately after they remove the sedative. So no recovery time for her! And she wakes up goofy, but giggly. I think one of the hardest things we've had to do is walk away from her as they put her to sleep. It's heartbreaking to see your child go limp. Anyway, it was all for good as the Dr's say her scans looked clear. This is amazing of course. There were 3 spots on her initial MRI at St Jude that the Dr's were going to "watch" that must have been residual surgery interference as today they were not visible. We are so excited!!! We will have a spinal tap and hearing test on Friday to confirm there are no cancer cells in her spinal fluid and to make sure her hearing hasn't been damaged from the chemo. To add to the great day, Avery was 8.15 kilos today, which is roughly 17.93 lbs. On Friday she was 7.9 Kilos, 17.34 lbs. Let's raise our glasses for Marriott and Cheese Puffs!!

Her counts are still down and my guess is we will do another transfusion for both platelets and hemoglobin on Wednesday. In the mean time, our Dr - Dr Armstrong, is out on Maternity leave....for everyone that knows our experiences in KC, you should find this humorous. Our Nurse Practitioner is on call upstairs for the next 2 weeks as bottom line is nothing major can happen in the next 2 weeks or Dr Armstrong's wife is going to have to do it on her own's her 4th one, she should be a pro by now anyway!

Tara DaPape from KC is coming down either today or tomorrow to help out. She is delayed at this point due to all the storms in the NE and is hoping to get here tonight, but we'll see. We are very excited to have someone coming again...I get a little lonely without someone to talk to. Imagine that. Avery is working hard on crawling...more of an army crawl (shout out to Hank Money on this one) but she gets around when she wants to. As I write this she is attempting to pull herself up on her Bumpo, which most likely will end in a face plant, but I hate to stymie her progress. She is also missing pants at this point because her diaper leaked while we were at the hospital and of course I had no other clothes with us. Yes, I was one of those mothers today. Tush hanging out, arms full of baby, we went to all our appointments with big fat grin on our faces cause today is a good day.



Saturday, March 13, 2010

Week with Aunt Marriott

We had a great week with Aunt Marriott! On Thursday we discovered Avery's love for cheese puffs. She apparently has lost her lust for grilled cheese and replaced it with cheese puffs. She refuses to eat a whole lot of anything besides these high calorie, addicting treats. Good thing for us we have been told to feed her as many calories as we can get into her. Still, with all that puffy goodness, she is down to 7.9 K this time. That is roughly 17.3 lbs, which is a big drop from the 19.5 lbs she started at in December. I have a feeling next week will bring the nutritionist and an appetite stimulant. Hard to give them a stimulant when they constantly feel sick. We'll see what she says.

On Friday we met up with a little girl named Belle that has a tumor similar to Avery's, in our clinic. Marriott was holding Avery and when we stopped to say hello to Belle and her mom, she asked me if Avery got a new mommy. Ha! We rolled over that one for a good 20 mins. I can't wait for the random comments to come out of Avery's mouth when she is 2 1/2 yrs old!

Monday will be a very busy day. We have an MRI scheduled at 7:15am and after recovery the Scheduler seems to think she'll be up for therapy and dr's visits. We'll see how that goes. MRI is routine, just to check on the tumor bed and make sure nothing suspicious has popped up. She will also have a lumbar puncture and hearing test later in the week, but since her counts are at 0 they don't want to poke her and risk infection. This round has been pretty quiet and we are thankful for that. Now we just need to focus on her eating better...not that she ever did that very well to begin with. We are also looking forward to Tara coming to visit from KC. She arrives on Monday night, just in time for laundry!

If anyone has any high calorie items they think she might like...send em my way! I think she has grown a liking for spicy too. She seemed to like my queso dip I had on my cheese tortilla tonight. Hmmm...they say Chemo can change your taste buds.


Wednesday, March 10, 2010


Avery's counts finally dropped to 500 today. She had a transfusion for her low hemoglobin today and I imagine she will have one for her platelets on Friday. We had a long day of medicine running and dr's appts but she had a great day! The day did not start out so hot though... just as we were walking out the door she puked all over herself. That's what we get for giving her her meds after trying to feed her. Whoops! Won't do that again. She seemed unfazed by it of course.

Aunt Marriott is here this week with us and boy Avery loves her too! She finally got a bath today, which she desperately needed as she has puked on herself the last 3 days. I swore up and down that I smelled puke on her all day yesterday, but I think it may have been me that smelled like puke. Thank goodness Sara came so I could shower!

Tomorrow we have more appts and this time we get to do them all with her mask on. She absolutely hates the mask, and throws a fit when we try to put it on her. I would too if someone tried to put a mask on me that covers my whole face. Someday I am going to make a lot of money designing a germ mask that fits kids aged 0 - 2 yrs old. Don't steal my idea. Losing battle, but one we have to fight to try and keep her from catching anything while we are at the hospital.


Monday, March 8, 2010

New Week

Avery had an ok day today. We had appointments all morning and she was not much in the mood for those, but made it through. After lunch she took a little snooze and then we went for a walk. It was 70 degrees in Memphis today - absolutely gorgeous. Avery had her first experience with bubbles. After watching the bubbles for a while in awe, she finally clapped her hands together and squealed in delight. We'll have to do that again soon.

Dinner tonight brought up lunch. Not sure what triggered it as she was eating like normal. She managed to get herself, me and the up puke with only one set of hands is much tougher than I thought! We got it done though, even managed to change her dressing again. No clue how I managed to keep her calm for that! Poor Marriott is coming tomorrow and I have lots of laundry for her!


Sunday, March 7, 2010

Visit with Aunt Nikki

Aunt Nikki was here the last 3 days helping out. We were in the hospital most of that time so Nikki was able to experience the fun of sleeping in the parent room and in the room with her as they wake her every hour through the night. Boy that is exhausting! Avery had a very successful Chemo round this month. She was a trooper like normal and has managed to keep her cookies down the last few days. We were in patient until Friday night around 8 pm and then we were released. Avery's hemoglobin was low prior to being discharged so the topped her off for safe measure before we left. (transfusion) We ended up spending a quiet night at the Target House.

After this portion of the round we have to do daily doses of her G, which requires a hook up in the Med room each day for a helper drug that will stimulate reproduction of her cells. This of course was scheduled at 8 am on Saturday and wouldn't you know it has to be done at the same time every 24 hrs for the next 2 weeks....ugh for me.

Avery had a rough night last night. She was irritable, hard to console and exhausted but unwilling to sleep. She's been crabby today as well. She doesn't appear to feel the best, even though she's been eating fine and keeping it down. We'll see how she does after her nap. We had planned to go to the park as it is 64 degrees again today, but we may just end up staying home. I think she really enjoys being here at the Target House were she has a little more freedom to attempt to be mobile. She is working really hard in her PT and OT sessions and improving little bits at a time. She is sitting up, tripod style now, but is still unstable. Her trunk and stomach muscles are really strengthening and she does better sits ups than me! Course who I am kidding, I can't remember the last time I did sit ups...although my bicep curls included lifting an 18 lb kiddo all the time, so those are looking nice!

Some of you may know that I had a grand idea to go dark and in November I dyed my hair brown. Jeremy has made it quite clear, as has my mother, that they prefer me blonde so while Nikki was here I went and had my hair highlighted again. Thanks to my KC Dinner club girls for the funds...believe it or not the place I went did not take anything but cash! At the moment I am watching an awesome movie my brother sent me called Willow. It was one we watched as kids and loved, around the time of Princess Bride. Boy that brings back some giggles. I suppose I better go change the laundry and check on my munchkin again.


Thursday, March 4, 2010

Team Avery

My Council Bluffs Girls
Alicia & Arden - MN
Miss Jersey Anne herself
The Boys from Underwood down for the KC Texas Hold Em Tournament
Adam & Rylan from Neola, IA

Tuesday, March 2, 2010

Out & In

Avery was discharged from her Methotrexate Inpatient session on Saturday afternoon. It was great to be out of the hospital and even better to be out of isolation! We hung low on Saturday and simply unpacked, made dinner and watched a movie. Believe it or not Avery went to bed at 8:30 pm and slept until 7:30 am the next morning! WOW. Certainly we thought, this has to be a fluke and not to be repeated. But after a relaxing day of walking in the park on Sunday, Avery went to bed again around 8:30 pm and slept until we woke her at 7:30 am. Monday was a typical day at St Jude. We had appts all morning and then made it back to Target house for a late lunch, a nap and some catching up. Today was more of the same although we had to get our 2nd dose of the flu shot. Avery was a trooper of course. Didn't cry at all, and that flu shot hurts -- I don't care what anyone says. It shocks me she doesn't even flinch, even when she had 2 shots in each leg at the same time. She really is a tough little girl...I mean I tear up when they get me, then I complain about it the rest of the day to all my coworkers and then I swear I'm not doing it the next year.

Tomorrow we have a line up that starts at 9 am and is followed by admission into the hospital for all the icky drugs. These will make her sick immediately and she will start the downward spiral to a nutrophil count of 0. The next 2 weeks will be tough for her. She won't feel well and will be limited to the Target House for most of the out patient piece. Good news is we will only be inpatient for 4 days. (provided she doesn't come down with anything)

We discovered yesterday that she is teething again...we can see one back tooth popping through already and we suspect the other front top tooth is joining its partner. Not fun for her now, but once she feels better she might be able to eat some new things! We are also excited to see Nikki this week. She should be here tomorrow night and will stay through Saturday. We'll be in the hospital the entire time she is here, but we'll still manage to entertain ourselves and Avery.