Avery’s scans were all clear, seven years off treatment!! Definitely one of our best trips to St Jude’s, Avery was in a great mood the entire time. I think she needed a little Mom and Dad time.
Avery's Journey - Childrens Brain Cancer
Monday, April 1, 2019
Friday, January 25, 2019
Thursday, May 24, 2018
So long third grade hello Summer!!
Wow, time truly flies by! A lot of things have happend since our last post, most importantly Avery's annual scan was all clear!! Six full years off treatment!!
Our trip to St. Jude was a little different than what we are use to. Avery was moved from her normal clinic ( D Clinic) to the After Care Clinic. This was an exciting change for us because this marks a new chapter in Avery's Journey. No longer is our focus solely on Avery's survival, now we need to focus on helping her deal with life after treatment. We are also excited that we get to keep Dr. Armstrong as our primary Doctor as he is in charge of the After Care Clinic. We found it funny that a few of the nurses seem to know Avery's story very well, so I'm sure Dr. Armstrong had been telling them about her for the last eight years as they anxiously awaited her arival to their clinic. We will truly miss our friends in D Clinic and we will never forget all they did for us.
Avery's school year seemed to go by very fast as well. Tomorrow is her final day of third grade and we really feel good about where she is at and how she is doing. She still has her struggles, but in the grand sceem of things she has had another successful year. She is excited for Summer, but looks forward to Emmett joining her next fall as he becomes a Mill Creek Mustang Kindergardner.
Avery has a busy summer ahead of her. We have planned a vacation with friends to Florida, she will be attending her fourth Camp Quality, trips to Grandma's and Nana's, she will be attending Summer school, continue her therapies, and most importantly spending time with Emmett and Quinn.
We want to thank everyone for your continued support and prayers. We wouldn't be here without you. Have a great Summer!!
Love
Jeremy, Jenn, Avery, Emmett, and Quinn
Our trip to St. Jude was a little different than what we are use to. Avery was moved from her normal clinic ( D Clinic) to the After Care Clinic. This was an exciting change for us because this marks a new chapter in Avery's Journey. No longer is our focus solely on Avery's survival, now we need to focus on helping her deal with life after treatment. We are also excited that we get to keep Dr. Armstrong as our primary Doctor as he is in charge of the After Care Clinic. We found it funny that a few of the nurses seem to know Avery's story very well, so I'm sure Dr. Armstrong had been telling them about her for the last eight years as they anxiously awaited her arival to their clinic. We will truly miss our friends in D Clinic and we will never forget all they did for us.
Avery's school year seemed to go by very fast as well. Tomorrow is her final day of third grade and we really feel good about where she is at and how she is doing. She still has her struggles, but in the grand sceem of things she has had another successful year. She is excited for Summer, but looks forward to Emmett joining her next fall as he becomes a Mill Creek Mustang Kindergardner.
Avery has a busy summer ahead of her. We have planned a vacation with friends to Florida, she will be attending her fourth Camp Quality, trips to Grandma's and Nana's, she will be attending Summer school, continue her therapies, and most importantly spending time with Emmett and Quinn.
We want to thank everyone for your continued support and prayers. We wouldn't be here without you. Have a great Summer!!
Love
Jeremy, Jenn, Avery, Emmett, and Quinn
Sunday, January 21, 2018
I can't believe she's 9!
This weekend we celebrated Avery's 9th birthday and she had a great time! She chose to have a pool party with her friends and enjoyed the water and splashing that accompanies a great pool party. We played outside a bit -- thanks Kansas City for being almost 60 today -- and ended the evening with a slice from all 4 gourmet cupcakes she selected. All in all, a fantastic weekend for sure.
Avery is working hard at school and with her continued therapies. We discovered in the summer that her body was starting puberty and had to work with our endocrine team to put that on hold. The options included an extremely large shot given every three months or an implant in the arm that happened once a year. We opted for the implant and are enjoying the hormone swings as she regulates. While Avery has been growing, we are still pretty far behind the average and need to get her body a little further in that area before we can start letting those puberty things kick in. Standing at a whopping 3'8" now, we know we will be lucky to hit 5 feet -- but we really want to get there if we can. She started working with a new therapist in addition to her current ones to help her more fully understand her body and allow her to focus on appropriate ways to react when over stimulated. This is a tough situation for her but she definitely needs some help understanding whats ok when she gets there.
School is going alright. Each month we see her fall further behind her peers in her learning, which was expected, but still hard to watch. She is reading at an early first grade level and we have seen some regression in her math more recently. She is learning to tell time, but its a struggle for her. Almost all of her schoolwork is modified to her level and we are very lucky to have a great teacher and strong special ed teacher. Emmett knows all his numbers and letters and is starting to catch on to a lot of the sounds now. His progression helps push her a bit and its fun to see them work together. Next year we will have his presence at school to help her as well, which will be great support. Now we just need that dog from KSDS Inc to help keep her steady. We have had a rough winter in terms of falls. Her desire to be independent is outweighing her direction for safety and as such has resulted in a few stitches, liquid bandages, trips to the ER and the dentist. Needless to say, we are back to using our walker mainly to stymie the habit of running when we clearly aren't walking that great. The helmet is still part of the daily attire (which is awesome for the hair) but it doesn't protect the face from chairs and dressers. Battle scars are nothing new, but man that cute face doesn't have a lot of real estate left.
We head back to St Jude for our annual MRI (OMG that seems crazy to even type) in early March. It's been a full year since she was last scanned. We have decided to take Emmett with us this year. Time for him to learn more about what his sister has and continues to go through. Days of appointments with a 5 year old boy isn't exactly a dream, but its important to us that he sees more than just the physical limitations that challenge her each day. The needle pokes, the lack of eating all day, the sitting and waiting, the prodding and questions and checking and invasion that all come with follow up appointments. He needs to see that, feel that, really start to understand who this annoying big sister of his is. She is fiery and particular, giggly and whiny, determined and methodical and above all, a fierce fighter that gets up everyday and puts her gloves on to face all the challenges this life has given her with as many smiles as she can muster....and yes as irritatingly as possible to her little brother. As it should be.
Welcome to 9 baby -- we love you!
Avery is working hard at school and with her continued therapies. We discovered in the summer that her body was starting puberty and had to work with our endocrine team to put that on hold. The options included an extremely large shot given every three months or an implant in the arm that happened once a year. We opted for the implant and are enjoying the hormone swings as she regulates. While Avery has been growing, we are still pretty far behind the average and need to get her body a little further in that area before we can start letting those puberty things kick in. Standing at a whopping 3'8" now, we know we will be lucky to hit 5 feet -- but we really want to get there if we can. She started working with a new therapist in addition to her current ones to help her more fully understand her body and allow her to focus on appropriate ways to react when over stimulated. This is a tough situation for her but she definitely needs some help understanding whats ok when she gets there.
School is going alright. Each month we see her fall further behind her peers in her learning, which was expected, but still hard to watch. She is reading at an early first grade level and we have seen some regression in her math more recently. She is learning to tell time, but its a struggle for her. Almost all of her schoolwork is modified to her level and we are very lucky to have a great teacher and strong special ed teacher. Emmett knows all his numbers and letters and is starting to catch on to a lot of the sounds now. His progression helps push her a bit and its fun to see them work together. Next year we will have his presence at school to help her as well, which will be great support. Now we just need that dog from KSDS Inc to help keep her steady. We have had a rough winter in terms of falls. Her desire to be independent is outweighing her direction for safety and as such has resulted in a few stitches, liquid bandages, trips to the ER and the dentist. Needless to say, we are back to using our walker mainly to stymie the habit of running when we clearly aren't walking that great. The helmet is still part of the daily attire (which is awesome for the hair) but it doesn't protect the face from chairs and dressers. Battle scars are nothing new, but man that cute face doesn't have a lot of real estate left.
We head back to St Jude for our annual MRI (OMG that seems crazy to even type) in early March. It's been a full year since she was last scanned. We have decided to take Emmett with us this year. Time for him to learn more about what his sister has and continues to go through. Days of appointments with a 5 year old boy isn't exactly a dream, but its important to us that he sees more than just the physical limitations that challenge her each day. The needle pokes, the lack of eating all day, the sitting and waiting, the prodding and questions and checking and invasion that all come with follow up appointments. He needs to see that, feel that, really start to understand who this annoying big sister of his is. She is fiery and particular, giggly and whiny, determined and methodical and above all, a fierce fighter that gets up everyday and puts her gloves on to face all the challenges this life has given her with as many smiles as she can muster....and yes as irritatingly as possible to her little brother. As it should be.
Welcome to 9 baby -- we love you!
Tuesday, August 15, 2017
It seems like forever since the last post...wait it has been!! A lot has happened since then. Avery celebrated her eight birthday in January! I can't believe how fast time has flown by, it seems like it was just yesterday that we were celebrating her first birthday at the Target House in Memphis.
Shortly after her birthday we headed down to St.Jude for Avery's sixth month scan. This was a big one. This was Avery's five year off treatment scan. Overall, I think we felt very confident that everything was going to be fine. But, as many of you know things can change fast in the cancer world. Thankfully that change didn't happen... Her scans looked great. Dr. Armstrong even uttered the words "cured". It's safe to say Mom and Dad were ecstatic! However, with that news came the scary realization we didn't need to come back for an entire year for scans. To be honest this makes us a little nervous, but we weren't complaining.
Avery completed second grade in May. She had a fantastic school year and was ready for summer. She spent the first week of summer vacation with Nana in Minnesota. While there, Great Grandpa was having some troubles and was hospitalized. Fortunately for Grandpa, Avery knows her way around hospitals and knows a thing or two about cheering people up. As soon as she returned to KC it was time to head off to Camp Quility. This was Avery's fourth year at camp and she is a regular there now. She had a new companion this year (Melissa) that she really bonded with. Melissa was a great fit for a companion and totally "gets" Avery. The rest of the summer included a trip to Iowa to visit Grandma and Grandpa, playing in the back yard with her brother and sister, our family vacation to visit our good friends at lake Okoboji in Iowa, and finally another trip back to Minnesota with her brother to visit Nana and GJ. She was a very busy kid for sure.
School started last Friday. Third grade! Avery was excited to find out that several of her best buds were in the same class with her. She is looking forward to another great year at Mill Creek.
We want to thank everyone for their support over the years. We are so proud of Avery and so thankful she has all of you in her life. Don't forget September is Childhood Cancer Awareness month and the St. Jude walk is September 23. You are all invited to join Team Avery and walk with us to help raise money for the fight against childhood cancer.
Shortly after her birthday we headed down to St.Jude for Avery's sixth month scan. This was a big one. This was Avery's five year off treatment scan. Overall, I think we felt very confident that everything was going to be fine. But, as many of you know things can change fast in the cancer world. Thankfully that change didn't happen... Her scans looked great. Dr. Armstrong even uttered the words "cured". It's safe to say Mom and Dad were ecstatic! However, with that news came the scary realization we didn't need to come back for an entire year for scans. To be honest this makes us a little nervous, but we weren't complaining.
Avery completed second grade in May. She had a fantastic school year and was ready for summer. She spent the first week of summer vacation with Nana in Minnesota. While there, Great Grandpa was having some troubles and was hospitalized. Fortunately for Grandpa, Avery knows her way around hospitals and knows a thing or two about cheering people up. As soon as she returned to KC it was time to head off to Camp Quility. This was Avery's fourth year at camp and she is a regular there now. She had a new companion this year (Melissa) that she really bonded with. Melissa was a great fit for a companion and totally "gets" Avery. The rest of the summer included a trip to Iowa to visit Grandma and Grandpa, playing in the back yard with her brother and sister, our family vacation to visit our good friends at lake Okoboji in Iowa, and finally another trip back to Minnesota with her brother to visit Nana and GJ. She was a very busy kid for sure.
School started last Friday. Third grade! Avery was excited to find out that several of her best buds were in the same class with her. She is looking forward to another great year at Mill Creek.
We want to thank everyone for their support over the years. We are so proud of Avery and so thankful she has all of you in her life. Don't forget September is Childhood Cancer Awareness month and the St. Jude walk is September 23. You are all invited to join Team Avery and walk with us to help raise money for the fight against childhood cancer.
Sunday, January 1, 2017
Happy New Years!
It's hard to believe that 7 years ago we spent an excruciatingly long day waiting for a man we'd just met to give us back our baby after cutting open her brain to remove a tumor the size of a golf ball. Yes, that was our New Years Eve 2009.
Fast forward 7 years....yes I said 7 years. Avery is 22 days away from her 8th birthday and 3 months away from that fictitious milestone every cancer warrior aims for...5 years NED...true remission and to some, "cured". I don't know that we'll ever truly feel that way or use the cured word because we know all too well how unpredictable this nasty cancer can be and how quickly it can return. And we have lasting daily reminders of its presence in our world for those 4 years of battle....but we also have hope. And grateful hearts. And perseverance. And much to our amazement, a huge army still standing behind us - just in case.
So 2017 is bound to be a big year for us and we can't wait!
Thursday, August 11, 2016
Fantastic News!!
Hi Everyone,
It's been over six months since my last trip to St Jude and I was so happy to get back there last week (mostly to play with the kitchen down in the clinic)! Mom and dad seemed a little more nervous than usual, but there was a pretty long break in between my last scans. I assured them that I was going to pass my test before I went down and wouldn't you know it, I got the best news ever!! Great scans!!! Dr. Armstrong said if I get stable scans in January I might not have to come back until the following January! I'm not sure Mom liked the thought of that but, with that long of a break she'll have some time to get used to it. Plus, that will put me 5 years post radiation and at that point the word "remission" might become part of my story! I know everyone will continue to pray for me and I can't thank you enough. I'm a fighter (I think my mom uses the word Pistol) and a believer...cancer has nothing on this girl!
Love Avery
It's been over six months since my last trip to St Jude and I was so happy to get back there last week (mostly to play with the kitchen down in the clinic)! Mom and dad seemed a little more nervous than usual, but there was a pretty long break in between my last scans. I assured them that I was going to pass my test before I went down and wouldn't you know it, I got the best news ever!! Great scans!!! Dr. Armstrong said if I get stable scans in January I might not have to come back until the following January! I'm not sure Mom liked the thought of that but, with that long of a break she'll have some time to get used to it. Plus, that will put me 5 years post radiation and at that point the word "remission" might become part of my story! I know everyone will continue to pray for me and I can't thank you enough. I'm a fighter (I think my mom uses the word Pistol) and a believer...cancer has nothing on this girl!
Love Avery
Tuesday, January 12, 2016
Boo Yeah!
Avery with her doctors at St Jude
Well she did it again! Another stable scan with no new growth or scary looking new spots. All of the prior "schmutz" is there and the same as our last scan, which in the cancer world is about as good as it gets after treatment. She continues to amaze us and her doctors. Prognosis at diagnosis was less than 25% after 5 years. Here we are, 6 years from diagnosis, 2 relapses and nearly 4 years off treatment. To say she is the exception to the rule is obvious...we are so stinking proud of our warrior!
Boo yeah cancer! You can suck it.
6 more months of living it up!
Jenn & Jeremy
Sunday, January 10, 2016
6 Month Scan
One of Avery's favorite things to do is watch old videos of herself on her iPod. The other day she showed me one of her coming down the stairs at the house. It was a simple video-I had asked her to put on socks and a sweater all by herself and she came downstairs having done so (although the cardigan was on backwards). As she comes down the stairs she is telling me about it and then gets distracted by seeing her helmet on the table. Her speech is slower and less pronounced and it's obvious she has hearing issues as her pronunciation for "helmet" comes out something like hemu. The video honestly left me speechless for a few seconds. I had to stop and breathe, before responding with the appropriate, high pitched "oh look at you baby girl!! Look how little you were!" That I know she was looking for. How could that have been 2 and a half years ago? It really put into perspective how far she has come these last few years. Something I tend to forget as she struggles to write her letters and memorize her sight words and use the restroom.
She loves those pictures and videos of herself and for the first time I think it hit me that she is proud of herself for getting so big...something I never realized. As we make our way down to Memphis today, I find that gnawing feeling of scanxiety return and the dread that the trip always brings. This will be the longest we have gone between scans and although she is asymtomatic and we have no reason to expect anything but a stable report, I can't shake the fact that cancer follows no path, no rules, no predictable state and can rear its ugly head at anytime. The last few months we have watched many families say goodbye to their warriors or strap on the gloves to fight the beast a second or third time. So we wait with bated breaths for our scan and results on Tuesday...prayers for stability would be so appreciated...
Jenn
Saturday, October 10, 2015
Annual Pumpkin Patch Fun
Our annual outing to the pumpkin patch was a success! Donuts and Cider followed by an exhaustive display at the ever changing landscape known as Johnson Farms. We've been hitting up this local favorite since we first got back from St Jude in 2010. Each year they add a new element or attraction and this year they added Big Wheels and Birthday Parties. To say I am excited is an understatement. I mean - who doesn't like big wheels? And well Quinn is prime for a pumpkin patch birthday party!
Trekking around a pumpkin patch 37 weeks preggo comes with its perks -- no lifting heavy pumpkins and guaranteed nap for momma later. The kids picked out a haul including one for baby Quinn who is set to make her debut sometime before Halloween. (preferably sooner rather than later so I can have pumpkin beer with the neighbors while trick or treating). The kids can't wait for her to arrive. Emmett has become quite the doting big brother to his new baby friends and daycare and in particular loves the baby girl there. Avery has always loved babies as many of you can attest and swears she will bring me diapers, wipes and burp clothes whenever I ask... we'll see how much that actually happens. Jeremy and I are anxious for her to arrive, him because he worries about being outnumbered and wants to make sure we can handle it. Me because I am done with this big belly and general uncomfortableness that accompanies being pregnant. All said - we can't wait for her to arrive. The countdown has begun...
September was a great success for us and all the families in the Childrens Cancer world. The St Jude walk was a big hit being in September (even it if was 3 miles instead of the 1 mile I had thought). Team Avery raised over $4000 and we couldn't be prouder. Next week Avery will be on the local tv morning show as they choose the winner of the KC St Jude Dream Home. The show is airing at 10:30 on Thursday so that should be fun. If you haven't had a chance to buy a ticket - I totally would. $100 can get you a $400K home in the KC area, right on a little lake -- its amazing. Summit Homes is the builder and the house is freaking beautiful. Bradens Hope Gala was also a huge success raising half a million dollars towards research grants for childrens cancer -- for its 4th year - this gala has sure done an amazing job. That means 5 different trials/research teams will be able to keep going, getting us closer to better options for curing these kids. I am in awe of what this local family has managed to do in such a small amount of time. It just goes to prove that we can do it - with or without those big pharmaceutical companies.
We have also been blessed to have met some very amazing families along this journey and to have some that are right here in Kansas City. The kids and the parents that belong to this special group are the toughest of the tough and the solidarity that is formed when one of us needs help is awe inspiring. It's a club I pray none of you ever have to join, but we are so honored to be a part of it with these amazing people. Even 3 years off treatment...no longer in the thick of chemo and puking, low counts, and ports. Avery's deficits are many and her struggles are daily, but she is here and still fighting and worth every ounce of effort and prayer that all of us (you included) have put into things these last 6 years.
So as the pink ribbons come out and we move our focus on to the TaTas (which are just as important)...just remember that September being over doesn't mean the fight ends for families of childhood cancer....its just as hard, just as unfair, and just as unbearable to watch a child who hasn't lived, who hasn't grown, who doesn't know any different fight this ugly beast. Thank you to everyone that continues to support us and this fight - 365 days a year. We truly appreciate it.
Jenn & Jeremy
Wednesday, August 26, 2015
1st Grader
Well the first full week of school went well - Avery seemed to slide right into the swing of things and was very excited to see her classmates. We have a new case manager at the school and so far I have been really impressed with her and how she works with Avery.
Avery has been working hard on walking and balancing herself. It's amazing what a little GH juice will do! Her strength has definitely improved and we find her spending more and more time cruising on her own between walls and furniture at home. At school she uses her walker 85% of the time and then cruises like a new baby learning to walk, within the classroom. We still have a lot of falls and to be honest I have to close my eyes a lot as she tries to maneuver - but knock on wood...no ER trips for stitches in the last 9 months so we are calling it a win.
We are all anxiously awaiting the arrival of new baby girl Christiansen. Believe it or not, I am really not swollen this time (although give it another week or 2 and I probably will be). At this point I am not sure what will be more difficult...chasing around 2 toddlers with a huge belly...or chasing around 2 toddlers and an infant. I guess an infant can be put down in a swing, so I am anxious for her arrival myself. Little Sister is set to arrive on Halloween - or if I have my way, 10/18. We'll see what happens. Avery is busy practicing with her Itty Bitty so she can be a big helper. Emmett is not interested in helping at all - although potty training has been the biggest help so far. (thanks nana!) We were so not looking foward to buying 3 different sized diapers. Luckily Emmett stepped up and figured it out these last few weeks.
We are fast approaching the month of September - which happens to be Childhood Cancer Awareness month. Going Gold is the "IN" thing to do and we ask that you support us as we plaster the page and FB with our message. Childhood Cancer is the number one killer of our kids today. Currently I can name 3 other kids that have been diagnosed with cancer since our diagnosis that we were friends with prior to being introduced to this world. Are you kidding me? These aren't people we met after our diagnosis. These aren't families we met at St Jude or on the Oncology floor at Children's Mercy. These are 3 families that we have dinner with, drink beer with, watch our kids play with... oh and that we now have had to share our expertise with in the world of what has now been deemed our "new normal." September is our chance to scream louder than all other months for more funding for research and better treatments for the future generation.
With that said, we will be participating in a lot of Children's Cancer activities this month - but the one we have decided to ask you all to join us on is the St Jude Walk. This year they have moved the walk to September 26th -- a big change from the end of November that it has been on in years past. Location is still at Power & Light on that Saturday morning (9 am walk starts, registeration opens at 7:30am) and as always, we want to show Avery that we stand beside her, even when she isn't in the throws of treatment. Every day is a struggle for her....it will never be easy, and she will always have deficits that keep her from being like the other kids. As she gets older these will be more obvious to her and will start to affect her psychologically as well as physically. So please join us - it's a short mile walk in nice weather and she loves to see everyone. Whether you join the team online, donate to St Jude on her site, or just show up the morning of -- we don't care. Someday we want to look back and show her what an amazing support team she had all those years - even after the active treatment ended, because for her it hasn't ended...its been replaced by therapies, daily shots, new drugs, special ed classes and adaptive learning styles.
To join TEAM AVERY: http://fundraising.stjude.org/site/TR/Walk/Walk?team_id=165836&pg=team&fr_id=40431
Much love,
Jenn & Jeremy
Tuesday, June 2, 2015
Big Summer Start
The last few weeks have been full of excitement and anxiety for us. As a family we waited for the results of the chromosome tests on the new baby. Luckily, they came back as negative for any of the more common chromosome issues, along with a strong heartbeat and a pink bow. Then we anxiously waited for the end of our first year of Kindergarten - which was a BIG deal for a pretty excited (and newly deemed) 1st Grader. Then we followed it up with a trip to St Jude for our 4 month scans. They resulted in a stable read and graduation to 6 month scans. May has been a whopper for this family and I am so ready for some relaxing summer nights and some weekends by the (plastic, inflatable) kiddie pool in the backyard, sans my margaritas.
We have had a very blessed month and are praying for an extremely uneventful next 6 months as we await the arrival of our newest class act and Avery's next big set of scans. She will be headed off to Cancer Camp on Sunday - another full week without us and total big girl camper stuff. She is really excited for that and for the rest of the summer spent at the JoCo Parks and Recs program swimming and playing with all her friends. She has made so much progress this year in so many areas and we couldn't be prouder. Today the PT therapist at St Jude actually said the words "we will be walking unassisted at some point." in 6 years no one has ever said that to us -- not here or at the KC Rehab Center or at CMH. We were kinda dumbfounded. She has also put herself back on the charts (albeit at 1%) but she's back on there...she weighed in at 35 lbs and 39 inches! Holy crap. Amazing a daily needle and some drugs will do for ya.
Tomorrow we head over to meet with the Urologist to see what he has to say about her latest bladder study. We definitely have not seen any improvement in this area so we are hoping he has some more ideas to try. After that appointment we start the 9 hour journey home to KC to see Emmett and celebrate our month of wins! Go Team Avery!
Jenn & Jeremy
We have had a very blessed month and are praying for an extremely uneventful next 6 months as we await the arrival of our newest class act and Avery's next big set of scans. She will be headed off to Cancer Camp on Sunday - another full week without us and total big girl camper stuff. She is really excited for that and for the rest of the summer spent at the JoCo Parks and Recs program swimming and playing with all her friends. She has made so much progress this year in so many areas and we couldn't be prouder. Today the PT therapist at St Jude actually said the words "we will be walking unassisted at some point." in 6 years no one has ever said that to us -- not here or at the KC Rehab Center or at CMH. We were kinda dumbfounded. She has also put herself back on the charts (albeit at 1%) but she's back on there...she weighed in at 35 lbs and 39 inches! Holy crap. Amazing a daily needle and some drugs will do for ya.
Tomorrow we head over to meet with the Urologist to see what he has to say about her latest bladder study. We definitely have not seen any improvement in this area so we are hoping he has some more ideas to try. After that appointment we start the 9 hour journey home to KC to see Emmett and celebrate our month of wins! Go Team Avery!
Jenn & Jeremy
Wednesday, February 4, 2015
MRI Results
It is with a huge sign of relief we share the news of a stable report. The bleed in her pons is still visible, but stable. There also appears to be another small spot similar to this, but in a new area. We expect to see more changes the further out we get from treatment and they will simply add to the list of things to watch. There are a lot of things to watch now, but as long as none of them are getting larger we are happy.
It was decided that it is time to move forward with Growth Hormone for Avery. At 6 years old we are only 31lbs and 39 inches tall. In the last 3 years we have not put on much weight and hardly any height. Averages for 6 years old is roughly 45.5 inches tall and 46 lbs -- we are well below that and not even showing on the charts in terms of growth anymore. From what we have been told, Growth Hormone is a daily shot that Avery will get until she is 18. It is extremely expensive so we are starting the process of working with our insurance to get approval for this. We haven't talked to her about this yet -- more specifically the daily shot. The company that we get the Growth Hormone from will come to the house and show us how to do this, so at least we will have some training. Been a while since I used my nursing skills.
Next scans are in early June and by then we should be able to see some changes in her if the GH works like it's supposed to. We are excited for her to grow but at the same time nervous to loose our little peanut. There are of course concerns that can come up with using GH and we pray that we for once have a smooth ride through this next phase of things. We appreciate the hordes of prayers that have been sent these last few days as we waited out not only scanxiety, but the 5 year milestone that the statistics represent. 5 years ago, we were given a 25% survival rate for children her age with Medulloblastoma. That means 25% of the patients her age (1 yr old) were expected to be alive after 5 years. It hasn't been easy, and the cost has been high - but we do not regret a single decision we have made along the way and owe our strength to all of you - our supporters for the last 5 years.
Happy 6th Birthday Baby.
Jenn
It was decided that it is time to move forward with Growth Hormone for Avery. At 6 years old we are only 31lbs and 39 inches tall. In the last 3 years we have not put on much weight and hardly any height. Averages for 6 years old is roughly 45.5 inches tall and 46 lbs -- we are well below that and not even showing on the charts in terms of growth anymore. From what we have been told, Growth Hormone is a daily shot that Avery will get until she is 18. It is extremely expensive so we are starting the process of working with our insurance to get approval for this. We haven't talked to her about this yet -- more specifically the daily shot. The company that we get the Growth Hormone from will come to the house and show us how to do this, so at least we will have some training. Been a while since I used my nursing skills.
Next scans are in early June and by then we should be able to see some changes in her if the GH works like it's supposed to. We are excited for her to grow but at the same time nervous to loose our little peanut. There are of course concerns that can come up with using GH and we pray that we for once have a smooth ride through this next phase of things. We appreciate the hordes of prayers that have been sent these last few days as we waited out not only scanxiety, but the 5 year milestone that the statistics represent. 5 years ago, we were given a 25% survival rate for children her age with Medulloblastoma. That means 25% of the patients her age (1 yr old) were expected to be alive after 5 years. It hasn't been easy, and the cost has been high - but we do not regret a single decision we have made along the way and owe our strength to all of you - our supporters for the last 5 years.
Happy 6th Birthday Baby.
Jenn
Saturday, January 17, 2015
Heartbroken
This little girl captured the heart of so many with her giggles and energy. Everyone at St Jude knows Belle. Even at her hardest moments she always had a witty comment or sneaky smile for you. Today she earned her very well fought for Angel Wings. We are completely heartbroken.
This hits very close to home for us and we pray for peace and solace for her parents and siblings as they endure the weeks ahead. Pulling that brilliant character away from them is just devastating and I can't imagine the horrible emptiness they must feel after a 5 year battle with this ugly beast.
We are coming up on Avery's 6th birthday in less than a week. Something we were told would most likely never see. Frozen theme again this year. We invited her friends from her class and we will see how that goes. Then the day after her party we will leave for our next round of scans and check ups. We could use some prayers for stable scans with regards to the bleed in her brain stem. The MRI is on February 2nd and results will be given on the 3rd. We will post as soon as we can.
Jenn
Sunday, January 4, 2015
5 Years!
5 years ago, right after Christmas we were given some unexpected, life changing news. Our 11 month old daughter had a brain tumor and the prognosis was not good. We were given a 25% chance of her surviving 5 years . Since that day, Avery has had over 10 surgery's, has done 4 different Chemo regimens, 72 days of radiation, and has traveled to 4 different states to do this. It's hard to believe that it has been 5 years since we started this journey. It's even harder to think that another family will inevitably start the same path tomorrow. We want to thank everyone for all the support you have given us over the past five years. There is no way we could have done it with out you. We thank God everyday that we still get to see Avery's smile each morning. She has touched so many lives and continues to amaze us everyday. It's been 33 months since Avery's last treatment, and while each day she deals with deficits from her treatment, there isn't a day that goes by that we regret our decisions to fight. She is a warrior, a miracle, but above all else a survivor.
Jeremy & Jenn
Jeremy & Jenn
Saturday, December 20, 2014
Disney 2014 Christmas
3 years ago in October we were told Avery had relaspsed again, this time with visible tumors and leptomenigial spread. Devestated once again we had to make hard decisions to spend quality time with her or to put the gloves back on and keep fighting. We have never regretted choosing option 2 even though it has come at a high cost for Avery. Her deficits and delays will plague her daily for the rest of her life. But yet here she is - 3 years later - stronger than ever.
When Avery relapsed we asked to have Avery's Make A Wish moved up as we prepared for the worst. We headed off to Disney World for Halloween, just weeks after hearing the crappy news. We even had a huge party of friends that were willing to go with us. It was amzing. When we returned we battled hard for 8 more months and finally seemed to kick this beast down. It has been 2.5 years since her last radiation treatment. We have had 2.5 years of what they refer to as "stable" scans. There is a lot guessing and crossing of fingers that spots are nothing and can be chalked up to "treatment schmutzt." This last visit to St Jude however, gave us a little different report. This time we were told that they found a hemoragic bleed in her brainstem. This is common for kids that have had as much radiation as she has. Unfortunately, her bleed is in her brain stem - a place that is not forgiving for extra fluid. As a result, we have been watching closely for changes neurologically. Stroke, weakness, paralysis, siezures and of course death.
Hearing this kicked our "someday" into gear and we decided it was time to take her back to Disney World - a place she's been begging to go since we were last there. To say she has fun is an understatement. Her and Emmett squealed, oooed and ahhed all week long. She giggled and ran around with her brothers and the Scahub boys, while Nana and GJ chased them around the many parks of Disney. No one was lost and the meltdowns were few and the Christiansen's have had a very Merry Christmas already. Thank you to Nana, GJ and Jeremy for pushing this to happen now -- my preference to plan would have not allowed for an impromptu trip like this - with memories that will last forever. And just a small reminder to all - don't put off till tomorrow what you can do today. Tomorrow is promised to no one. Cancer Fighter or not.
Jenn
When Avery relapsed we asked to have Avery's Make A Wish moved up as we prepared for the worst. We headed off to Disney World for Halloween, just weeks after hearing the crappy news. We even had a huge party of friends that were willing to go with us. It was amzing. When we returned we battled hard for 8 more months and finally seemed to kick this beast down. It has been 2.5 years since her last radiation treatment. We have had 2.5 years of what they refer to as "stable" scans. There is a lot guessing and crossing of fingers that spots are nothing and can be chalked up to "treatment schmutzt." This last visit to St Jude however, gave us a little different report. This time we were told that they found a hemoragic bleed in her brainstem. This is common for kids that have had as much radiation as she has. Unfortunately, her bleed is in her brain stem - a place that is not forgiving for extra fluid. As a result, we have been watching closely for changes neurologically. Stroke, weakness, paralysis, siezures and of course death.
Hearing this kicked our "someday" into gear and we decided it was time to take her back to Disney World - a place she's been begging to go since we were last there. To say she has fun is an understatement. Her and Emmett squealed, oooed and ahhed all week long. She giggled and ran around with her brothers and the Scahub boys, while Nana and GJ chased them around the many parks of Disney. No one was lost and the meltdowns were few and the Christiansen's have had a very Merry Christmas already. Thank you to Nana, GJ and Jeremy for pushing this to happen now -- my preference to plan would have not allowed for an impromptu trip like this - with memories that will last forever. And just a small reminder to all - don't put off till tomorrow what you can do today. Tomorrow is promised to no one. Cancer Fighter or not.
Jenn
Wednesday, October 22, 2014
Pumpkin Patch 2014
Jenn
Saturday, September 27, 2014
Sorry for the delay in posting Avery's MRI results. It's always a game of catch up when we get back home and we didn't get the final results of the LP until we were on our way back to KC. It was great to be back at St. Jude. We all felt a since of relief when we walked in the door. The good news is that the MRI showed no tumor growth and her LP was clear so her scans were stable!!! The bad news is she has developed a small hemorrhagic bleed. This radiation damage is very common, however Avery's is in her brain stem and that makes it a little tricky. Her risk for stroke, seizures, and paralysis have now gone up and we will need to keep a close eye on her behavior and look for those signs. There is not a lot that they do for these when they are small and if it does get larger surgery still might not be an option because of it's location. Avery's Dr. was concerned but stressed that if it stayed small that it shouldn't be a big issue. So it's a wait and see approach for now. We will go back in 4 months to do another MRI and discuss any further action if needed. Please pray that this resolves itself and Avery continues to have stable scans. Thanks again for you continued support.
Sunday, September 7, 2014
Almost 4 weeks into Kindergarten & 2 Weeks until our St Jude Trip
The last few weeks have been a whirlwind as Jeremy and started to figure out the new arena known as elementary school. The teachers and aides are getting accustomed to Avery and her behavior and we are working on options for helping her get through the day. She struggles with her energy level (thanks radiation) because there is no nap time in Kindergarten, so by the end of the day she pretty beat and not cooperative. The school has instigated a sticker chart to help her stay motivated. She struggles with writing and with group time the most. We have discovered that in preschool she may have been allowed to wander during activities and group time, rather than participate. That is a behavior we are working to change. We have also discovered that she is quite the perfectionist and as such doesn't enjoy doing her writing because she hasn't figure out slanted lines. We knew she has some OCD tendencies but hadn't yet displayed the perfectionist card. Only fitting I suppose, given who her mother is. She loves school so far, although I think her favorite part is Lunch and Library. I have been chosen as room mother so I am hoping to get some extra time to see her in her new environment.
In 2 weeks we leave again for St Jude. Its been a ridiculously long time since we were last there - 5 months - and we are nervous for this trip. Luckily Avery has been acting like her normal self so there is no symptoms causing us to worry. She has had a pretty quiet summer in terms of her health which we are so grateful for. She did however develop a UTI this weekend but its been months since we have had one of those.
September is Childhood Cancer Awareness Month. I know for many, its the start of the Breast Cancer season, but we ask that everyone hold off on the pink and hang onto Yellow for a few more weeks as we try desperately to bring awareness for our kids. This month has a lot to offer for our kids and we are excited to participate in them. The Hope Gala is on September 27th in Overland Park and is an event put on by Braden's Hope - an organization devoted to giving grants to Dr's across the country working trials that may help kids like Avery avoid the awful "adult" treatments that have wreaked havoc on her body and will forever plague her with deficits. This year's recipients include Avery's very own Oncologist at Children's Mercy. To read more go to http://events.r20.constantcontact.com/register/event?oeidk=a07e908h95i78929301&llr=tpfao8oab&showPage=true.
Children's Mercy is also hosting the KCares for Kids Walk at the Sporting KC Complex on 09/27. This event raises funds for Cancer Research at Children's Mercy. Events start at 8:30 am - family friendly fun, followed by a 1 mile walk at 10 am. More information can be found here: http://give.childrensmercy.org/site/Calendar/1390169748?view=Detail&id=101064
We will also be participating in the Paulina Cooper Dot to Dot Annual 5K walk & run/10K run on 09/20. Avery will be the featured child for the race this year and will be introduced before the start of the race. This run honors Paulina, a local Kansas City girl who lost her fight with a brain tumor in 2004. To learn more, check out the site at http://www.dottodotrun.org/index.html.
Across the nation, families are doing all the can to bring awareness to this month for our children. Many bridges, buildings and structures are being lighted gold in honor of this fight. We proudly support the gold awareness and will answer any questions anyone might have. When October 1st hits - we will switch gears to support the Ta Tas with the rest of the world, but for just 3 more weeks we ask that you all join us in supporting the Gold for our kids....for the future Ta Tas that someday I dream Avery will have.
We appreciate everyone's continued support. For us the battle field is much quieter now, but we know all too well how quickly that can change.
Jenn
In 2 weeks we leave again for St Jude. Its been a ridiculously long time since we were last there - 5 months - and we are nervous for this trip. Luckily Avery has been acting like her normal self so there is no symptoms causing us to worry. She has had a pretty quiet summer in terms of her health which we are so grateful for. She did however develop a UTI this weekend but its been months since we have had one of those.
September is Childhood Cancer Awareness Month. I know for many, its the start of the Breast Cancer season, but we ask that everyone hold off on the pink and hang onto Yellow for a few more weeks as we try desperately to bring awareness for our kids. This month has a lot to offer for our kids and we are excited to participate in them. The Hope Gala is on September 27th in Overland Park and is an event put on by Braden's Hope - an organization devoted to giving grants to Dr's across the country working trials that may help kids like Avery avoid the awful "adult" treatments that have wreaked havoc on her body and will forever plague her with deficits. This year's recipients include Avery's very own Oncologist at Children's Mercy. To read more go to http://events.r20.constantcontact.com/register/event?oeidk=a07e908h95i78929301&llr=tpfao8oab&showPage=true.
Children's Mercy is also hosting the KCares for Kids Walk at the Sporting KC Complex on 09/27. This event raises funds for Cancer Research at Children's Mercy. Events start at 8:30 am - family friendly fun, followed by a 1 mile walk at 10 am. More information can be found here: http://give.childrensmercy.org/site/Calendar/1390169748?view=Detail&id=101064
We will also be participating in the Paulina Cooper Dot to Dot Annual 5K walk & run/10K run on 09/20. Avery will be the featured child for the race this year and will be introduced before the start of the race. This run honors Paulina, a local Kansas City girl who lost her fight with a brain tumor in 2004. To learn more, check out the site at http://www.dottodotrun.org/index.html.
Across the nation, families are doing all the can to bring awareness to this month for our children. Many bridges, buildings and structures are being lighted gold in honor of this fight. We proudly support the gold awareness and will answer any questions anyone might have. When October 1st hits - we will switch gears to support the Ta Tas with the rest of the world, but for just 3 more weeks we ask that you all join us in supporting the Gold for our kids....for the future Ta Tas that someday I dream Avery will have.
We appreciate everyone's continued support. For us the battle field is much quieter now, but we know all too well how quickly that can change.
Jenn
Thursday, August 14, 2014
Milestone Achieved - Kindergarten Day 1
Well we have hit another milestone here at Team Avery -- we now have our very own Kindergartner! Avery started kindergarten this morning and couldn't wait to get there. She was so excited. Course the nurse has already called me to let me know she hit her head on the playground and her tummy is hurting. Awesome - it's only been an hour and half. The first day is always the hardest they say - so hopefully tomorrow will prove better. (especially after an enema!)
She has Mrs Talb and their are 20 kids in her class. Mrs Talb is a very orderly and specific teacher and rumor has it she is a great one. She has been teaching for a long time and I look forward to a few weeks from now when she has Avery figured out and we can get down to business on the learning. I have high hopes that Avery will make some new friends this year - ones we can have play dates with. I yearn to hear those girly giggles floating out from her bedroom as she pretends with her new best friends.
This will be the start of a new phase for me as well -- dealing with the School and Avery's IEP is something that most parents do not find an easy task. My goal is to play nice as best I can -- or this could be a long 12 years... I have not yet met with this school's team as we transferred in from our assigned school and they don't approve that move until a few days before school starts. Hoping to meet with them next week to fill them in on Avery and her baggage. I keyed the nurse in today about her "Master Adult Manipulator" skills -- hoping that helps a little today.
Our next visit to St Jude is at the end of September -- a longer wait than normal due to scheduling. Crossing our fingers that waiting 5 months hasn't left anything unchecked.
Jenn
Subscribe to:
Posts (Atom)