Avery's Journey - Childrens Brain Cancer
Wednesday, December 26, 2012
The Holidays
Well they once again went by in a blur...
It never fails to amaze me at how quickly we jump from September to January each year. With Football, Halloween, Thanksgiving and Christmas all wrapped up together closed out with Avery's birthday it just seems to fly by. It's hard to believe that January is knocking at our door. 2012 has been a better year for us by far, although not the perfect one we had hoped for. 2013 has to be better, although with 2 kids in daycare and the Fiscal Cliff looming, I'm not sure how much better. We will continue to be so thankful for the time He has given us together as a family no matter what. Come what may.
We sure hope everyone had a fantastic holiday season. We were able to drive up to Iowa for a weekend and celebrate with Jeremy's family - something we haven't done in 2 years. Next year we'll work on hitting up the MN clan...no promises though as my job does not allow for vacation time during year end. Tax returns and W-2s will consume my thoughts for the next 3 weeks as my team works their tushies off to get it all done. Jeremy however is working the opposite end of the spectrum....his slow season. Luckily, he is able to stay home with Avery and Emmett while they also have time off from school, rehab and daycare.
Santa was good to the kids again this year...as were family and friends. Emmett is stocked up on formula and diapers - per our request. This kid is huge! And formula isn't cheap! We go in for his 4 month check up at the beginning of the month and I swear he will be in the 95% for everything. He also scored big on John Deere tractors...and not the plastic kind either. I'm not sure who was more excited....that's not true, I'm pretty sure Jeremy was doing everything in his power not to rip those packages open. He must have gotten 10 of them. It totally does not match with my Swallow inspired nursery theme...Boys.
Avery loves her books and puzzles which are both fantastic for her and her cognitive skills. Today I caught her reading a card from the St Jude team and she recited the spelling of her name while she did it. It didn't actually say her name on the card, but she readily read off A V E R Y as she looked at it. Once again, she proves she's smarter than we think. The biggest excitement of all came with her gift from Santa. She told Santa she really wanted a Tree House for Christmas and she's been very consistent all month about it. We decided she probably meant a play house and sure enough that was what Santa brought her! She absolutely loves it. Its sturdy enough for her to pull herself up on and Daddy even put up some touch lights inside so she can see her dolls and make cakes in her little kitchen. We had to rearrange the "office/playroom/nana suite/library/office/guest room" that we call the 4th bedroom, but man it was worth it to see her face light up like that. Sorry Nana.
We spent Christmas Eve together as a family of 4 and it was very relaxing. We hit up a local favorite Mexican restaurant where Avery proceeded to dump her root beer in my lap, the sugar packets all over the floor, and then point blank looked at her Dad and said "No!" when he told her to sit down. Seriously? What do you say to that? It was all Jeremy and I could do to not laugh...our life finally resembles normal. Something we have been so desperately seeking for the last 3 years. Our soon-to-be 4 year old was being a menace and while its exasperating to no end -- it gives us a sense of relief. We ended the evening with a drive around the neighborhood in the mini van checking out the lights. Ahhhh...to live the life of a soccer mom...someday.
One of our favorite things to do during December is hang our Christmas Cards in the entryway to the living room. Each year Avery looks through the pictures and cards and identifies who she knows. We keep them and look at them each year and she loves it. I guess it gives me a sense of security...like all of our friends and family are close by should we need them. I am hard pressed to take them down at the end of January. The New Year will be rung in on the mellow key again this year. Last year we had the neighbors over for a bit and I am sure this year will be much of the same. Someday I swear we will get cool again, but for now we savor the moments with Avery and Emmett...and maybe a glass of wine or 2 as we welcome 2013. Like a lot of you, we are nervous to see how this Fiscal Cliff thing pans out for our budget. Its amazing what happens when you add another day care expense. We figured out we pay more for our daycare than we do our mortgage so that being said, we should have had a lake home by now! Stupid college loans.
Avery's Birthday is right around the corner. Followed closely by our next trip to St Jude. We go down in mid February for her next follow up scan. The Dr has indicated that we shouldn't expect to see any further shrinkage as we are too far out from the radiation. Our prayers are for Stable. That means, nothing new and nothing bigger. Continued prayers for positive results are what we need to keep moving forward. It really has felt like we were at such a stand still for the last 3 years. The 29th marks our 3 year anniversary from diagnosis. A day we will never ever forget..."I'm not going to sugar coat this, Avery has a tumor in her brain." The second day I will never forget was the day we discovered the 5 year survival rate of a child under the age of 5 with Medulloblastoma is 25%. That means that 5 years after diagnosis 25% of them are still alive. 75% of them are dead. And the scary thing is that another 35% of the ones that survive 5 years will die within the following 10 years. Like Avery, they will suffer serious neurological damage, delayed cognitive function, depressed thyroids, stunted growth, impaired hearing, speech and vision and an overall dysfunctional development. Not to mention issues with their hearts, secondary cancers and the return of the original cancer. I'll take every one of those issues as long as she is here with us. Every day with her is a victory in our book and we'll take it! Stupid cancer.
Here's to the New Year - to a better year! Make it count.
Jenn
It never fails to amaze me at how quickly we jump from September to January each year. With Football, Halloween, Thanksgiving and Christmas all wrapped up together closed out with Avery's birthday it just seems to fly by. It's hard to believe that January is knocking at our door. 2012 has been a better year for us by far, although not the perfect one we had hoped for. 2013 has to be better, although with 2 kids in daycare and the Fiscal Cliff looming, I'm not sure how much better. We will continue to be so thankful for the time He has given us together as a family no matter what. Come what may.
We sure hope everyone had a fantastic holiday season. We were able to drive up to Iowa for a weekend and celebrate with Jeremy's family - something we haven't done in 2 years. Next year we'll work on hitting up the MN clan...no promises though as my job does not allow for vacation time during year end. Tax returns and W-2s will consume my thoughts for the next 3 weeks as my team works their tushies off to get it all done. Jeremy however is working the opposite end of the spectrum....his slow season. Luckily, he is able to stay home with Avery and Emmett while they also have time off from school, rehab and daycare.
Santa was good to the kids again this year...as were family and friends. Emmett is stocked up on formula and diapers - per our request. This kid is huge! And formula isn't cheap! We go in for his 4 month check up at the beginning of the month and I swear he will be in the 95% for everything. He also scored big on John Deere tractors...and not the plastic kind either. I'm not sure who was more excited....that's not true, I'm pretty sure Jeremy was doing everything in his power not to rip those packages open. He must have gotten 10 of them. It totally does not match with my Swallow inspired nursery theme...Boys.
Avery loves her books and puzzles which are both fantastic for her and her cognitive skills. Today I caught her reading a card from the St Jude team and she recited the spelling of her name while she did it. It didn't actually say her name on the card, but she readily read off A V E R Y as she looked at it. Once again, she proves she's smarter than we think. The biggest excitement of all came with her gift from Santa. She told Santa she really wanted a Tree House for Christmas and she's been very consistent all month about it. We decided she probably meant a play house and sure enough that was what Santa brought her! She absolutely loves it. Its sturdy enough for her to pull herself up on and Daddy even put up some touch lights inside so she can see her dolls and make cakes in her little kitchen. We had to rearrange the "office/playroom/nana suite/library/office/guest room" that we call the 4th bedroom, but man it was worth it to see her face light up like that. Sorry Nana.
We spent Christmas Eve together as a family of 4 and it was very relaxing. We hit up a local favorite Mexican restaurant where Avery proceeded to dump her root beer in my lap, the sugar packets all over the floor, and then point blank looked at her Dad and said "No!" when he told her to sit down. Seriously? What do you say to that? It was all Jeremy and I could do to not laugh...our life finally resembles normal. Something we have been so desperately seeking for the last 3 years. Our soon-to-be 4 year old was being a menace and while its exasperating to no end -- it gives us a sense of relief. We ended the evening with a drive around the neighborhood in the mini van checking out the lights. Ahhhh...to live the life of a soccer mom...someday.
One of our favorite things to do during December is hang our Christmas Cards in the entryway to the living room. Each year Avery looks through the pictures and cards and identifies who she knows. We keep them and look at them each year and she loves it. I guess it gives me a sense of security...like all of our friends and family are close by should we need them. I am hard pressed to take them down at the end of January. The New Year will be rung in on the mellow key again this year. Last year we had the neighbors over for a bit and I am sure this year will be much of the same. Someday I swear we will get cool again, but for now we savor the moments with Avery and Emmett...and maybe a glass of wine or 2 as we welcome 2013. Like a lot of you, we are nervous to see how this Fiscal Cliff thing pans out for our budget. Its amazing what happens when you add another day care expense. We figured out we pay more for our daycare than we do our mortgage so that being said, we should have had a lake home by now! Stupid college loans.
Avery's Birthday is right around the corner. Followed closely by our next trip to St Jude. We go down in mid February for her next follow up scan. The Dr has indicated that we shouldn't expect to see any further shrinkage as we are too far out from the radiation. Our prayers are for Stable. That means, nothing new and nothing bigger. Continued prayers for positive results are what we need to keep moving forward. It really has felt like we were at such a stand still for the last 3 years. The 29th marks our 3 year anniversary from diagnosis. A day we will never ever forget..."I'm not going to sugar coat this, Avery has a tumor in her brain." The second day I will never forget was the day we discovered the 5 year survival rate of a child under the age of 5 with Medulloblastoma is 25%. That means that 5 years after diagnosis 25% of them are still alive. 75% of them are dead. And the scary thing is that another 35% of the ones that survive 5 years will die within the following 10 years. Like Avery, they will suffer serious neurological damage, delayed cognitive function, depressed thyroids, stunted growth, impaired hearing, speech and vision and an overall dysfunctional development. Not to mention issues with their hearts, secondary cancers and the return of the original cancer. I'll take every one of those issues as long as she is here with us. Every day with her is a victory in our book and we'll take it! Stupid cancer.
Here's to the New Year - to a better year! Make it count.
Jenn
Tuesday, December 4, 2012
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