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Thursday, April 29, 2010

Last Chemo

Avery finished her last chemo treatment this afternoon. Yay! Unfortunately she hasn't been feeling the hottest today. She spiked a fever about an hour ago and they will be drawing labs shortly to do some cultures. Hopefully her anc counts are still high enough where her body will be able to fight it off. Her counts really shouldn't drop for a few days so say your prayers...

We've had a rough go the last 2 days in the hospital. Crazy night owl Avery was here and we stayed up till midnight both nights. It wasn't until last night that we finally discovered that Avery is affected the complete opposite way most people are to Benadryl. Most people are out the moment they even look at a bottle of the stuff....my kid does the opposite -- she becomes rowdy!! Needless to say we had to change the meds for night time to Adivan instead....crossing our fingers tonight is a better night.

Grandma was here with us this week and she got in lots of snuggles and loving. She also got puked on -- whoops! Avery has managed to hold her cookies down today so far, but yesterday she nailed Grandma but good! We are hoping to be discharged tomorrow afternoon but the fever might hold us up a bit. We'll have to see.

Coincidences are creepy....we are ending our last round in the exact same room we started in in January. And we finally got to meet Dr Gajar -- the Dr I emailed about coming to St Jude while we were in Kansas City. He just so happens to be On Call this week. Crazy huh?

Well I am off to find some chocolate...Daddy is changing the 6th diaper since he got here 3 hours ago and I better sneak out while he is preoccupied!

Love,
Jenn

Saturday, April 24, 2010

Tornado Discharge

Methotrexate Complete
Hemoglobin Transfused
Daddy Arrived
Grandma Arrived
Mom ate a steak
Flash Floods Gone
Tornado Watch Expired
I am exhausted!

What a busy weekend so far! I was so excited to wake up on Friday afternoon from a nap on mommy's lap to find daddy smiling at me and Grandma not far behind. I had a pretty uneventful week of Methotrexate and was able to push it out of my system on time. They let us go this afternoon and Mommy said she deserved a big fat steak....Daddy disagreed, however Grandma didn't so off we went to dinner! We had to royal treatment while we were there. First of all I was the best dressed baby in the place....ok the only baby in the place. But I was perfect! Lots of old ladies in fancy outfits stopped by to tell me how behaved I was. I didn't have to try too hard though because they served my favorite...mashed sweet potatoes with brown sugar. I was in heaven. Then Mommy decided I needed a diaper change and this really wasn't the type of restaurant where they have convenient baby stations, so the manager told Mommy to follow him. He took us to a private dining room where he laid down a white table cloth so mommy could change me. Talk about the royal treatment!! Mommy says people from the south are sweeter than honey!

Tomorrow they are having the big spaghetti dinner/silent auction benefit in Apple Valley, MN. We are so excited to see all the pictures of everyone that will be there. I wish we could go but I have some things to finish up here...(ahem 1 more stint in the hospital with those nasty drugs) Next week I will be feeling ishy and dropping counts again, but at least we have a few days of freedom before that happens! Mommy says I have one more little session of poking before we leave for the beach. She says they have to put in fiducials (screws that act as landmarks for radiation) in my head for the radiation piece...I swear I am going to have more scars than anyone....and I haven't even done the normal falling down scar type kid things yet!! Scars are tough though....one of my boyfriends has one right between his eyes and he is way cool, so I am not worried!

Well, we hope everyone has a great time in MN -- we'll be thinking of you!

Love,

Avery

Thursday, April 22, 2010

Round 4 Week 1

I think this last round might be a tough one. She is doing ok, but running a little low on energy. Her hemoglobin has been hovering around 8.1 for the last 2 weeks and they usually wait to transfuse after it has dropped below 8. Since she hasn't done that yet, she hasn't had the transfusion. As a result, she is a bit more rundown then normal. Today she spent 2 hours sleeping on Becky's chest and refused to be put down. She seemed to perk up after dinner though and I managed to get her to eat a decent amount....highly unlikely for her, but a good thing none the less. She weighed in at 8.5 kilos today (18.7 lbs) and this is the most she has weighed for over 3 months. Cheese balls and Hagen Daz must do the trick! Her newly acquired teeth have added to her fun I think and she is slowly discovering the neat abilities they provide her with.

She was measured for braces for her ankles yesterday and low and behold they had a new design in...PINK CAMO. This is of course what we got as we wanted to make Daddy proud. The lady laughed at me thinking I was kidding, and then I had to explain why we like camo so much. She said these were going to be the smallest she'd ever had made -- of course, my kid has long skinny feet! These braces will help her have more stability when she attempts to stand, cruise and eventually walk until her ankles are strong enough to do so on their own. She will only wear them when we are working on these things, so not a constant for her. We are slowly ticking down the days until round 4 is over and we head to Florida for our next big adventure. For those of you also keeping tabs...we are on day 2 of 28 -- Friday is day 3.

Jeremy has been very productive at home the last few days. We had the air ducts cleaned out as we attempt to prepare for her arrival at home. St Jude has a "we mean business" air system that helps to eliminate bacteria and crap in the air. While cleaning our ducts isn't quite the same, Jeremy thought it would help. The company told us there was construction debris in the ducts...and the house was built in 1978. Whoa. Jeremy also had a long list of things to gather around the house for his trip down for the weekend and I had him running all over the place looking for them all! He found them too!

Avery is actually in bed as of now...9:43 pm so I am going to watch a little LOST on the computer (I haven't seen any of them this year) and get some sleep. Last night was rough as they have to come in and check her levels/change her diaper every hour. Sleep is a little tougher during this stage of the process as they are either changing her and taking urine specimens or vitals being taken....needless to say we both are a bit tired. Tomorrow is our last day with Becky from Paychex. She has to drive all the way back to Indy, but we sure had a great time with her. Not only did Avery love her, but Mommy got to catch up on all the fun news back at the office! Definitely a much needed distraction!

Jenn

Tuesday, April 20, 2010

Sunday, April 18, 2010

Quiet Weekend


Aunt Aubrie came down to Memphis this weekend to spend some time with us. We only had a couple appts on Friday and then on Saturday morning we discovered Avery's counts had hit 2500 again. YAY! To celebrate we contemplated stalking the Tuohy's (football movie about a family in Memphis that just came out) but instead settled on lunch, pedicures, and a little shopping, followed by frozen custard! It was a true girls weekend and we all had a great time! Jeremy stayed in KC this weekend and worked on planting the garden and doing some yard work. He also was able to escape for some daddy time with Matt and Tom, doing what he loves best -- Turkey Hunting. Although his efforts were not completely successful, he did come home with a bag full of Morel mushrooms (yuck), which are the best he swears. Avery and I are completely bummed (not really) that we won't be there to smell them cooking.

The next 2 days will also be quiet ones as we wait for Tuesday night and admission for fluids to start our 4th and final round of Methotrexate. This drug is a rather nasty one from my understanding, although the immediate side affects are nothing compared to the vincristine, cyclo, and cisplatin side affects of tiredness and vomiting. This drug us given in high doses for 24 hrs and requires a urine PH be taken every 2 hours. In the event that the PH is high or low, they adjust the bicarb fluids they are pumping into her at the same time. This means the poor girl can pee through a diaper in 30 mins - no questions asked. Unfortunate for anyone hanging out with us during this part, cause I get tired of changing all those diapers!! Leucovorin is the rescue drug that is given shortly after the Methotrexate. We will spend Wednesday - Saturday in the hospital before being discharged for a few days. Jeremy and his mom will be driving down on Friday and Grandma will spend next week with us. We are really looking forward to Grandma time! We'll go back in patient on Wednesday next week for the icky chemo drugs and be in until Friday. The beginning of the chemo rounds tend to go by a little more quickly then the last 2 weeks. Before we know it, we'll be packing our bags and heading to Florida for our next step in this journey...and then soon enough we'll be back home, even though we'll continue chemo orally for 6 months. HOME --- man what I wouldn't give for a night in my own bed....soon enough!

Jenn

Thursday, April 15, 2010

OT this week - learning balance

video

Wednesday, April 14, 2010

Round 3 coming to an end...

Round three is closely approaching its end and from there we have only one more round of chemo. Avery has had an ok week this week. Her counts hovered just above transfusion points so she was a little fussy the past few days. She ended up holding steady though and we never needed a transfusion. Her 7 teeth are coming in a little more each day, and I have been applying lots of orajel to relieve some of that awful pain.

Both her and I had a wonderful time with Jennifer the last few days, even though we were stuck mostly in the apt and the hospital. Avery is making huge improvements in the crawling area and her fine motor skills.

Tomorrow we meet with the Neurologist to discuss some of her deficiencies from surgery and treatment. Hopefully we will get a better understanding of long term affects from each of these and will have a better expectation for her development in the next few months. I have a sneaky suspicion that we'll get the "every child is different" statement though.

Jenn

Friday, April 9, 2010

Recent Pictures





Our First TV Star...

We have had a super week! We started off the week with the arrival of Miss Angie who was just a blast and brought with all kinds of goodies for both Me and Avery to play with. We "got our craft on" and made some adorable hats and hair clips for Avery....which she will promptly pull off her head, but we don't care!

On Wednesday, we met with the Radiation Oncologist to discuss our plan for radiation that believe it or not, will be starting in just 6 weeks! Dr Merchant and his team were very informative and helpful in helping us understand the process for radiation. At one point in the conversation he indicated that Avery was "going to make it" as she had had her tumor resected entirely and was a viable candidate for the Proton Therapy in Jacksonville. Although we already knew that in our hearts, it was so great to hear it from one of the Dr's a loud. Radiation can also be very similar to chemo in that the short term side effects are the same...hair loss, vomiting, loss of appetite, etc. Long term side effects are also possible and most likely include development issues in someone her age. This is something they will be monitoring for the rest of her childhood and addressing as needed. Overall, we feel really good about the decision to move forward with radiation.

Avery has been on the move much more this week as well. She has been crawling a few steps at a time here and there and we have every reason to believe that she will be crawling all over get out before too long! She is already obsessed with pulling herself up on everything -- the couch, the chairs, the crib. This is just about the most fun she's ever had, all the while giving me a heart attack each time she does so. Her counts are at 300 today, so nuetropenic and no crowds. She absolutely hates her mask...once again I will be making a lot of money some day for my creation of child masks that fit. Since this is the case and Memphis is crawling with allergy inducing air -- we will most likely be spending the weekend indoors! Not to worry though....I have plenty of hat crafts to keep me busy and Jeremy and Avery can practice crawling more.

Next week we await the arrival of Jennifer from MN and then later in the week Aubrie from Des Moines. Both will prove very helpful and entertaining I am certain! Hopefully she will not stay down long and her counts will rebound around mid week next week. We'll see. I anticipate a need for platelets on Sunday and I am sure we will need another Hemomglobin transfusion by Wed so we'll be busy!

The coolest thing we did this past week was meet Patrick Wharburton, the comedic actor on Rules of Engagement and the voice for Buzz Light Year in the cartoon. He plays the big jock-looking guy, who is almost always lacking in intelligence, but we love him. He was at St Jude on Thursday and we listened to him read a story and answer the kids questions. (one kid wanted to know how old he was) We had to giggle when the kids continued to ask him about the movie Toy Story (buzz light year is voiced by Tim Allen in the movies -- Patrick did the cartoon that ran on disney) Over and over again they asked about the movie and talked about the movie and he finally gave up when a kid asked him to autograph his movie. He He He. Avery got her picture with him of course -- he totally had no idea what to do with her but she was comfy and smiling. Today, Dora and the Backyardigans were here - we missed them but that was the talk of the hospital all day. Thankfully Avery doesn't understand those things yet so she wasn't disappointed.

Well, I better get the Munchkin up so all of us can get a decent night sleep tonight -- otherwise she'll be up till midnight again!

Jenn

Sunday, April 4, 2010

Happy Easter


HAPPY EASTER EVERYONE!
Today I got up and Daddy made me Bunny pancakes....they were yummy even if I only ate a few bites. Then we went to the Medicine Room for my daily G dose. Mommy made them check my counts cause I was a little sluggish. Of course I had a low hemoglobin count and needed a transfusion. Mommy and Daddy were bummed as this meant missing out on the Easter Egg Hunt at Target House until the nurse suggested we go and come back after wards. So that's what we did! However, I wasn't feeling so hot by that time so the egg hunt was a dud and Mommy and Daddy decided to come back to the hospital. Of course when we got here, neither of them could find my blood bracelet so Daddy had to go back to Target House to look for it while Mommy and I waited. St Jude's won't do anything without that bracelet and it takes another hour or more to get a new one. Finally Mommy found it in the diaper bag and we were in business. It takes about 3 hours for the blood to transfuse so we kinda hang out in a room for a while. Daddy has to leave soon and a cab is going to pick him up since we are still filling up. Hopefully this will be just the thing I need to pick me up and get me back to my crazy self. Tomorrow we have a big day, appts start at 7am (apparently someone did not get mommy's message about early appts) and then we get to hang out with Miss Hinn all week and work on hats that I can pull off my head! We can't wait!

Love,

Avery

Friday, April 2, 2010

Back at Target House

We had a great day today! First of all we were able to get discharged around 2 pm this afternoon and are back at the Target House for the weekend with Daddy. Second, we were able to meet Kirstin Trysla from KC. For those of you unaware, the Trysla's were a family we read about on the St Jude website prior to making the decision to come to St Jude's. They have a son, Clayton, who was 7 months old when he was diagnosed with a PNET tumor similar to Avery's. Nikki then tracked them down and asked her if she'd be willing to talk with us about St Jude. She was the sweetest person ever, I mean she had just encountered 2 stalkers (mom & Nikki)and still wanted to talk to me. It was great to hear personal experience from another mom and she helped solidify our decision to take Avery to St Judes. After walking me through her experiences and handing over tons of information she even tracked down phone numbers and followed up with me to make sure we had what we needed. The Trysla's were back at St Jude for a follow up scan (which was clear) and they stopped up to see Avery. We are so lucky to have met them and will continue to follow their progress with Clayton as well.

The weekend plans are low key as Avery is still feeling a bit icky. Hopefully she will perk up a bit by Sunday for the Easter Egg Hunt. Next week, Angie Hinn Schaub is coming to play with us. She thinks she is going to teach me how to crochet.....little nervous about that, still working on mastering the knitting hat skill! We'll see what I can learn! Avery's counts will most likely drop by Wednesday and we'll be stuck in the apt or outside on walks, but away from other people. Good thing is it will finally be nice out to go for walks...good thing too, hospital cafeteria food is not good for your diet when eaten in excess! Neither are Starbucks Dark Cherry Mochas -- thanks Aubrie. I don't even like coffee but for some reason I can drink the heck out of those things. The best news ever is that we have our G infusion at 10 am each day -- much more doable than the 8am they had us at last time....seriously.

Well, I better get back to Jeremy and Avery --

Love

Jenn

Thursday, April 1, 2010

Yucky

3rd round of chemo has been a little more pukey than one would like....poor thing wasn't feeling well yesterday afternoon and was throwing up for a good part of 2 hrs. The tough girl puked over the railing of her crib after pulling herself up, stood the whole time too! Then she puked in the tub a bit and then again after the tub. Today she was holding her own until I left to take Jonnelle to the airport. After finally eating a little bottle, she proceeded to puke it back up for Judy, Kelby and Barb -- whoops!! Good thing these ladies have been through their fair shares of puking kiddos!

Aunt Jonnelle was here all week with Baby Bell tagging along - belly-side of course. We found out she hadn't been maternity clothes shopping yet so Avery and I took her out on Tuesday to show her what we knew. It's amazing how much more comfy the belly is when pants have an elastic top! On Tuesday evening we were admitted for fluids and we started the chemo on Wednesday. Today the last drug was run and hopefully tomorrow we'll be able to go home. On Sunday the Target House is having an easter egg hunt and we hope to attend, provided her counts are still up. Jeremy will be here through Sunday so we may even attempt a little Easter Dinner!

We are now on Day 10 of round 3 and looking forward to the end of this round....round 4 will be the last round before we head to FL for Radiation. Next week we have an appt with the Radiation Oncologist team to discuss the processes, choices and plan for radiation. We hope to have a better understanding of what that means and looks like after that appt. We are getting closer and closer to leaving Memphis, which is exciting for the obvious reason of us being able to return to Kansas City. Boy we sure miss home.....

Jenn