We took Avery to see the Elmo Live show at the Sprint Center and let me tell you she absolutely loved it. While she refused to sit on anyone's lap or even in her chair -- she was totally content to stand up and bounce. She loved watching all the kids around us and she loved the music. She and her buddy Harper had so much fun. We have been trying to teach her to jump and so we make her bend her knees and crouch down and then we say jump and lift her up. She doesn't quite get the actual jumping part but she thinks its fun. So today she spent the whole time bouncing up and down in front of us, mimicking that process. She was furious when we attempted to pick her up and wanted nothing to do with Jeremy or I. It was great.
We took Avery out into the snow yesterday -- she hated it of course. She refuses to actually wear her mittens, although she will spend 20 minutes putting them on and pulling them off. We let her ride her Barbie 4 wheeler again, which of course meant daddy taped the button down and we coaxed Jersey into running ahead of her so she would chase her. It's amazing how much she loves that dog -- especially when the dog really doesn't care much for her. I think she would spend all day chasing her if we let her. I was yelling at Jersey to stop her barking yesterday and I swear - plain as day, Avery shouts out "Jersey Stop!" Then she points her finger at her and scolds her. Seriously.
Nana comes tomorrow and Avery is pumped. While we were in MN we discovered a new favorite....Nana. I picked her up after she crashed and burned on her push toy and she promptly refused me and nose dived for Nana. Are you freaking kidding me? Nana spoils her of course and she has figured out the pros of that situation - not that I can blame her. She will spend the week with us and then be here for the big party on Saturday.
A fantastic thing happened yesterday and I wanted to share it with all of you. Our friends from St Jude -- the Parkers, more specifically Megan, got the best news ever! NED - NO EVIDENCE of DISEASE on her MRI. Megan just finished the chemo regimen that both her and Avery were on until we had our recurrence in October. She is officially done with treatment and all signs are good for cancer free. She is a little fighter and still has some set backs to overcome, but that nasty cancer in her head is gone!!! We couldn't be more happy for them and wanted you all to include them in your prayers this week as they have been on this long road with us. They have been a huge help to Jeremy and I in terms of coping and we are very lucky to have met them.
A huge thank you also goes out to the ladies on Team Lucy. These wonderful women decided to put together a ton of meals for not only us, but 2 other families dealing with sick kiddos. These ladies took a night away from their families to put these together and it means so much. The generosity that shows up in situations like this is so amazing not only to receive but also to see. Lucy's mom told me the one thing she was afraid was going to happen without Lucy here with us was that all this amazing generosity and caring for people would stop. I think it's safe to say that this ugly fight simply wakes most of us up to what should have been doing all along. Jeremy and I will forever be a Partner in Hope for St Jude, as well as active in benefits, crisis coping, friends in need, and other families experiencing this horrendous path. I think this was a huge eye opener for us as to what we were missing out on by not being a part of this amazingness. Someday we won't need to be the receivers of so much support....and when that day comes, we plan on being the best supporters of others we can. We've seen first hand what a simple note from someone I don't know can do...a meal, a book, a prayer, an email, a necklace, a care package, a date night, groceries, a hug. When family supports you - well lets be honest -- you expect it. When a friend of a friend, a neighbor you've barely met, someone's sister you don't know, a co-worker from another state, a random person on the other side of the country sends you a message, a card, a donation, a picture of them in Team Avery gear, a story, a website, a whatever -- well it just shocks you. How could our family make them stop their busy lives to do something for us .....that right there people is what makes us human. And that is what Lucy's mom was talking about. So thank you ladies of Team Lucy....
Well, It's late and I have a lot of Birthday Party work to work on in the morning... I will post some pictures of the last few weeks soon...
Jenn
Avery's Journey - Childrens Brain Cancer
Saturday, January 15, 2011
Wednesday, January 12, 2011
Back from the Frozen Tundra
Avery and I finally made it back from the Frozen Tundra today. Just in time for a stop at the clinic for some platelets and boy did she need those. Bruising up worse than a 2 week old apple, it was a much needed refill for her as her platelet count was at 8. (desirable levels range in the 200-400 ballpark) We spent the night in Des Moines as the roads weren't the best yesterday. Nice thing was we got to see all our Iowa girls and that was some much needed girl time.
The weekend at Nana's was a cold one and I started to remember why we love Kansas City. Have you ever stood outside for a funeral in below zero temperatures while it snows on you? It's ridiculous. The services were nice and it was great to see the Zeglin side of my family. We haven't been to Minnesota since Avery was diagnosed. Although she wasn't able to see everyone (low counts) it was good that she saw some of our family and friends. We hope to make it back up there after all her chemo rounds are completed this spring so that we can see all our amazing supporters. Although we may wait till all that snow finally melts. They have over 30 inches on the ground - OMG.
The rest of this week will be pretty low key. Avery is in a great mood and seems to be full of energy so we'll be harnessing that as much as we can into some physical therapy and lots of walking. Although we'll be stuck inside with the walker, we may be able to gain some miles in daddy's man cave.... I also have a lot of sewing to do for Avery's Party which is less than 2 weeks away. So hard to believe she is almost 2 years old. We are also anticipating the arrival of Nana again, although we had our weekend fix so we won't be so on edge waiting for her to arrive. On Saturday we have big plans to go see Elmo Live! Our buddy Harper is coming too and we can't wait. However Mommy didn't consider the fact that Avery has no idea who Elmo is, so thanks to Nana, we have some reading/dvd's/toys to be studying this week. That way when Saturday arrives we will definitely think Elmo Live is awesome.
Jeremy says the benefit for Quinten on Sunday was great! Thanks to all of you that made it out there to support them. Quinten starts his 2nd round of chemo this week, so please keep the Dopsons in your prayers again. Q's hair started to fall out so now him and Avery are baldies together!
I sure hope everyone had a great couple of snow days -- I know how much snow puts a rut in the flow of things here in KC. I am however, happy we have some finally so we can make some use out of the Carharts that Uncle Jason got Avery. Tomorrow we plan to bundle her up and toss her in it - see what she thinks. I've been telling her for the last 3 days that the snow is kinda like sand only cold...if you remember she wasn't a big fan of sand the first couple of times we went to the beach. We'll see what kind of reaction the snow gets tomorrow!
Jenn
The weekend at Nana's was a cold one and I started to remember why we love Kansas City. Have you ever stood outside for a funeral in below zero temperatures while it snows on you? It's ridiculous. The services were nice and it was great to see the Zeglin side of my family. We haven't been to Minnesota since Avery was diagnosed. Although she wasn't able to see everyone (low counts) it was good that she saw some of our family and friends. We hope to make it back up there after all her chemo rounds are completed this spring so that we can see all our amazing supporters. Although we may wait till all that snow finally melts. They have over 30 inches on the ground - OMG.
The rest of this week will be pretty low key. Avery is in a great mood and seems to be full of energy so we'll be harnessing that as much as we can into some physical therapy and lots of walking. Although we'll be stuck inside with the walker, we may be able to gain some miles in daddy's man cave.... I also have a lot of sewing to do for Avery's Party which is less than 2 weeks away. So hard to believe she is almost 2 years old. We are also anticipating the arrival of Nana again, although we had our weekend fix so we won't be so on edge waiting for her to arrive. On Saturday we have big plans to go see Elmo Live! Our buddy Harper is coming too and we can't wait. However Mommy didn't consider the fact that Avery has no idea who Elmo is, so thanks to Nana, we have some reading/dvd's/toys to be studying this week. That way when Saturday arrives we will definitely think Elmo Live is awesome.
Jeremy says the benefit for Quinten on Sunday was great! Thanks to all of you that made it out there to support them. Quinten starts his 2nd round of chemo this week, so please keep the Dopsons in your prayers again. Q's hair started to fall out so now him and Avery are baldies together!
I sure hope everyone had a great couple of snow days -- I know how much snow puts a rut in the flow of things here in KC. I am however, happy we have some finally so we can make some use out of the Carharts that Uncle Jason got Avery. Tomorrow we plan to bundle her up and toss her in it - see what she thinks. I've been telling her for the last 3 days that the snow is kinda like sand only cold...if you remember she wasn't a big fan of sand the first couple of times we went to the beach. We'll see what kind of reaction the snow gets tomorrow!
Jenn
Tuesday, January 4, 2011
New Year - New Passing
It's amazing what a year can do....the bottom picture is Avery shortly after having her brain surgery on New Year's Eve 2009. The top picture was taken on Christmas Day 2010. Our baby is no longer a baby...As much as we were hoping for a 2011 filled with terrific news and fabulous memories, I am sad to say that we are not starting out that way. This morning my Grandfather Zeglin passed. He had fallen into the darkness of dementia, so in a way I suppose this was a blessing for him. But to those that are left behind it is always the hardest. He was Father to 6 children, Grandfather to almost a dozen grandchildren and Great Grandfather to 3 - one of which is Miss Avery. He will be missed by many.
That makes the count now 3 - we have lost 3 grandparents between us in the last 12 months. I am pretty sure Jeremy and I are at our max. Our hope is that once again God has recruited the help of our beloved grandparents to watch over Avery and us as we continue down this rough road. Team Avery in Heaven has quite the numbers now and there is no way to argue with that.
Services will most likely be on Monday, which will require me to travel to the frozen Tundra for the weekend. Obviously not my choice of time to go up to Minnesota. First off, it's colder than crap up there right now, not to mention the FEET of snow they have. I mean really -- no one likes 30 inches of snow except 10 year olds in snowpants....and even then unless you have plastic bags to put inside your boots, tucked into your long undies under the 3 layers of clothes you have on under your snowpants...I mean don't even try to go outside...and yes I know how to drive a snowblower. I mean how is Jersey Anne going to go to the bathroom? 2nd, Avery is neutropenic which means counts are 0 and a fever means the hospital. Oh and did I mention she is teething? Seriously.
Avery has been in great spirits the last few days although she has discovered the art of tantrum throwing and whining. She has made some definite decisions about what she does and does not want to do and if you attempt otherwise - WATCHOUT! She has been working really hard on walking and bending her knees and moving around the house. She has also learned how to give bear hugs -- with sound affects and all. It's hysterical to watch and even better to get one. We have been busy planning her 2nd birthday party. This will be a full-on kid event with adults as observers only. We are very excited to let her for once just be a kid....although same rules apply in terms of hand washing and being sick...
We managed to get the Christmas decorations down and put away - which was nice. Last year Nana and GJ had to do it all - which made for fun this year when I went to pull them out again. Avery was a great helper and had just as much fun taking them down as she did putting them up. I can only hope that continues every year! Jeremy went back to work today after being home with us the last 2 weeks. I think it was just as hard on him as it was on us. It had been a nice 2 weeks having him here all day with us. Luckily we won't be going back in patient until the beginning of February so we will have some time to recoup and really get her counts back up.
As we won't be here on Sunday to attend a benefit for our friend Quinten, I'd like to share the info with everyone. The benefit is at Llywelyns Pub at 6995 151st st. in OP. 15% of all food proceeds and all bar tips will be going to the family. They will have a silent auction and the band "Goverment Cheese" will be playing from 8-10pm. The benefit starts at 6pm so if you don't have any plans for dinner and would like to stop in, please do so. Remember part of the nights sales will go to benefit this family so a simple night of eating out could really help. Quinten and his parents are just beginning this journey and could use all the support they could get. To read more about Quinten's Battle check out www.quintenscrusaders.blogspot.com or go to his Caring Bridge site - Quinten Dopson.
Happy New Year everyone!
Jenn
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