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Wednesday, September 29, 2010

Round 3 - Day 6

Round 3 started on Friday and we found out just how quickly those Chemo drugs start to work. Last Wednesday Avery's counts were at 2150....a week later she has dropped to 1350. So needless to say "psycho sanitizing" parents are back on patrol. Shoes off, wash hands, touch nothing, wipe down anything dropped on the floor, etc. It's going to be fun. I think I may have bought out Walmart and Target's supply of handy wipes - sorry.

Avery's appetite has improved immensely in the last 3 days. Whatever is in that Erlotinib she took last month makes her not want to eat. We dropped close to 2 lbs last month due to it. This month we'll hopefully make that up, especially since Nana introduced Andes Mints for dinner. The down side to being on these others is that the counts drop so low with these 2 drugs. If it's not one thing it's another -- right?

Avery has been rocking the language world this past week. We swear she said the word "GO" the other day. She seems to be making huge improvements in mimicking our speech patterns and has been diligently working with us on EEE, AHHH, OHHH faces and sounds. I think we may have a 1st word on the horizon -- hopefully it's better than "go" and starts with an M or D.

We've found a new fun activity for us girls to do at night. We really like to take walks and point out the different things in the neighborhood. Yes, Jersey rides on top of the stroller....We were given an older model jogging stroller so we could actually move a little faster and maybe get some exercise from a friend. But sadly, the wheels are a little done for and are flat on one side. As a result, Avery gets quite the shake up while on our walks - so if anyone knows where to get new wheels -- let me know! I've searched the internet, but lets be reasonable, I really have no idea what I am looking for. And the brand no longer exists - so that option is out. We may have to take out the slow shopping stroller from now on!

Lastly, Avery's head is showing signs of hair regrowth. As you know, the area in which they radiated is questionable in terms of hair coming back. We expect some, but don't expect all and are fully expecting a large amount to not regrow at all. Good news is that she is a girl and the hair on top will cover this back area once it grows long. We did notice though that her hair seems to be slowly returning -- thinly, to a perimeter area of about an inch all the way around on the outside. This is so super exciting and we can't wait to see what will happen over the next 4 months, let alone when treatment is done in February. She looks like her daddy to a T -- but let me tell you -- the one thing I gave her was the capacity for a full head of thick hair and that will come in mighty handy when she hits 13 and really starts to care! Thanks Grandma.

This weekend we plan to head over to the Pumpkin Patch with our buddy Harper. Hopefully it will stay beautiful out like it has been and we'll have a great day with lots of fun pictures. I mean really - who doesn't like fall? It seems like we just finished this season...the holidays just seem to fly by so quick and then the next thing you know it's the middle of January. To us, it doesn't feel like almost a year, and at the same time I feel like this year has lasted forever. Totally doesn't make sense, but that's the truth. These next 4 months could really drag if it were any other time of year....but fall, and Halloween, Thanksgiving, Christmas, New Years -- and don't even get me started with the craziness that happens at work during these months....I mean a person really never has a chance to catch their breath and the next thing you know it's 2011, she's 2 years old and you are done with Chemo. BAM!!

Tuesday, September 21, 2010

End of Round 2

Friday marks the end of round 2 for Avery's maintenance chemo. We will start round 3 that day and be back on the 2 chemo drugs that so nicely dropped her counts last month. We are hoping she has built up enough to last the month and stay above 500 as we have some major plans for Halloween that include costumes, candy and other kiddos!

Avery is working hard on her walking and standing but we seem to be at a stand still in terms of physical momentum. The great news is that the girl is turning into one smart cookie! She loves her songs and actions and has a great time pointing to Daddy's truck, Jersey Anne and trees. She can pick out a lot of items in a her first word books when I ask her where they are.

Trina, our PT lady in KC brought Avery a new get up today. This walker is able to be hooked up to the Juppy so she can have a little more support. She seems to really like the contraption so we'll see if this doesn't help her even more.

This past weekend we finally met part of the Weber family here in Kansas City. For those of you that don't remember, a few months back we were contacted by this family as they found themselves in a very similar situation. Their daughter Lucy was diagnosed with a brain tumor right before her 1st birthday. She has since had the tumor removed and been receiving treatment here in Kansas City at CMH. Lucy and her family live literally, around the corner from us. This weekend they had a benefit for Lucy up the street and Avery and I stopped up for a bit to say hello. It was great to meet Bev and Lilly and we look forward to spending some time with them all. We miss all of our friends at St Jude and it's nice to have someone here close by that truly understands the experiences we are going through. So for those of you looking for another little girl to add to your prayer lists, please tack on Miss Lucy Weber.

Avery is anxiously anticipating the arrival of the best Nana in the world. Friday Nana will be here to spend the weekend with us girls as Daddy takes some boy time to hunt. Overland Park is having their annual Fall Festival and we are very excited to attend. Last year Avery and I randomly stumbled across this event on a Saturday morning and we loved loved loved it.


Jenn, Jeremy and Avery

Sunday, September 12, 2010

ISU Game

Avery was extremely bummed yesterday at the Cyclones loss - but still looked cute in her ISU gear! She got to hang out with her buddies Harper and Chance and some of her favorite Aunties as well!

Counts are still at 1300 and holding steady. We are 11 days away from starting round 3 - which means the counts will most likely drop again. The month of October will most likely be spent at home...but as cold and flu season are fast approaching it is probably inevitable anyway.

We went to church again today and for the 2nd time arrived to a teared up munchkin. She seems to be really interested in playing with the other kiddos for a bit but then moves into that anxiety stage of "where is mom & dad?" It's strange to see her do that - but I have to admit it makes us feel pretty good too -- totally selfish I know.

Fall is fast approaching and you can smell it in the air....albeit still 80 degrees here in KC. Soon enough we'll get to enjoy those few weeks of open windows and falling leaves, oh and lots of football and hunting - yea. It's really strange to think that Avery and I skipped the entire winter, spring and summer in KC and are now rounding on the end of the year. Fall always hits with such gusto and chaos as we race towards the finish line of New Years....I have a feeling that these next 3 months are going to fly by so fast and I thank God for that. Before we know it - it will be February and she will be done with treatment and finally able to build herself back up. What a journey - we thank the Lord everyday that we are blessed with all of you in our support circle and that our Avery is the strongest little girl ever. Someday we can only hope to be able to pay it forward with as much passion as we have seen from all of you....thank you.

Jenn & Jeremy

Thursday, September 2, 2010

It's already started.....

It's official....they are opening an American Girl store in the Oak Park Mall near our house and I was afraid of how much money we were going to be spending as Avery gets more and more into dolls. I thought I had at least another year or two before she was begging for one. Well, today her first one arrived! Itty Bitty Baby and her backpack of accecories came in the mail today from the very sweet Kregels! Avery is in l-o-v-e with her itty bitty baby. The eyes open and close and she has a blanket and bottle -- the whole 9 yards....even outfits! It was adorable to see her open the box. Now we just need a name!

She had a rough day today. Doesn't seem to want to eat at all and was tired. She has also either adopted an attitude as a fast approaching 2 year old, or isn't feeling as hot and as a result is not her sweet self. Either way, she's a bit out of sorts. The good news is that her counts are up still -- sitting roughly at 1300 which will make our visit to IA much safer this weekend. We are really excited to see our Iowa Team Avery and can't wait to give all kinds of kisses and thank you's! We are also excited for Monday's parade as Avery has been named Hoo Doo Days Princess 2010...this means a ride in the parade and lots of waves for everyone.

We've figured out a way to get the Chemo down this month, although sadly it resembles the same method I mentioned in an earlier that I mostly do for our furry children. Oh well --- 2 fruit snacks at 7:30 am each day really shouldn't be that big of a deal...right? We talked with our friends, the Parkers tonight and we are looking forward to next month when we get to see them again in Memphis. We've managed to coordinate schedules to be there the same time as them and that makes things just a little bit better. The anxiety that accompanies a parent as they wait for those scan results is gut wrenching. It's nice to be able to share it with someone who really knows the same feeling. On that note, Megan Parker is doing good and is starting preschool here soon. This is fantastic as she will be able to work on her PT/OT while there as well.

Well I better get back to the Itty Bitty -- we are working on putting baby to sleep now. We've mastered hugs & kisses and feeding baby already. Oh and Go Cyclones!

Can't wait to see Underwood/Neola/Minden/McClellan/Council Bluffs people this weekend!!