Winter is here...

Can you believe its already December. Looking back this has been our best year in a long time! Just hard to believe in a few weeks 2011 will come to an end and it will be 2012! Time is sure flying by!

Ok, so last post we were getting ready for Blake's routine MRI. I am VERY happy to report that his tumor is still STABLE!! We have made it a year and 3 months with a stable tumor! Hooray!!!!!

Our little rocker is doing well, he is ready for Christmas to be here. Not a day goes by that he doesn't ask me if its Christmas yet. I am amused at how last year I thought he was really excited about Christmas, and how this year he is even MORE excited! We were invited to the Leukemia & Lymphoma Society Christmas party again this year. We had a lot of fun last year, he is so excited to go see Santa! He has been making all kinds of 'lists' and wants to sit on Santa's lap and tell him everything he wants. (A lot of his ideas involve Lego's) Blake was also really excited about decorating the house for Christmas. He was very eager for the tree to go up after we took down all the Halloween decor. This year he helped put the tree up (which was quite the process this year due to half of our pre-lit tree not being lit) So instead of one night of decorating it became a few! lol Blake's favorite thing this year are all the lights on the houses. He has been trying to talk Phil in to adding some more lights on our house. (we just have them around the gutters) He really wants Phil to add them to our garage doors. Lol He is becoming quite the negotiator. Its been a lot of fun driving through the neighborhoods and hearing him squeal with delight as we pass the lit up houses! :) His spirit is contagious!!

So this month I participated in First Friday's. Its the first Friday of the month where all the art galleries in the Crossroads downtown open their doors and feature all kinds of artists work. The Gallery at 19 Below is who hosts givingSOLO's Children's Art Exhibit every year. For December, Joy Moeller (creative director @ 19 Below) decided she wanted to have her first show, and asked Jaime Lyon and myself to join her. This is like a dream come true for me! I love painting and creating crafty stuff, so of course I agreed!! December 2 was my first show. It was SO much fun! I sold several pieces, some monsters, some hand-made ornaments & shrinky dink necklaces/key chains. The crazy thing was that all of our art worked well together. Great minds think alike right?! It was such a fantastic night!

This year has been so good to us. I think I am actually a little sad for it to be ending. However, I know 2012 will be another great year for us! God has really helped us through a lot. This year has proven more than a couple times that our faith in God has carried us further than we expected. Several times this year we have come to what felt like a dead end, and each time when we least expected it, God has opened a door for us. I can't imagine going through this journey without having the faith and love of God surrounding us. Your prayers and support have guided us through some difficult times. Knowing we are surrounded by all of your love and support and prayers...its the BEST feeling in the world! So thank you!! Merry Christmas...and Happy New Year!! (if I dont talk to you before then)

Fall 2011

Fall 2011

Its already November, and my last post seems forever ago. Life has changed quite a bit over the past several months. I am going to do my best to catch you all up! This is gonna be a long one!

August-

School started August 22. Blake was very excited to return to Ms. Ashley's preschool class. He is making friends and has taken a liking to a little girl in his class named Audrey. She is a cutie! Lol She has white blond hair and blue eyes, so you can imagine they are quite the pair! I have been told that they always pick each other for centers. 

September-

Blake had a very fun and very busy September. On Sept. 10 First Hand Foundation (the organization that helped us get to Texas) gave us 4 free passes to the Sporting KC vs. Texas game. Kansas City vs. Houston...Ironic-I think not! Lol. We received VIP treatment, our seats were in the Victory Suite!! Buffet lunch, open bar, and Blake got to sit in the Lance Armstrong seat. He was treated like a king! We really had the best time, and KC won!!

Blake also started playing soccer on a special needs team here in Lee's Summit. The team varied in ages 4 to 16. They ran drills and learned the rules of soccer. Blake was excited to wear shin guards and his cool soccer shirt, even if it was a little big. He didn't want the one that was his size. Lol. If he still wants to play next year we will get him some cleats.

Blake also was the “Grand Marshall” for the Dalton Burner Foundation's 5k and Family Fun Run on Sept 11. The Dalton Burner Foundation has helped us pay several medical bills. We have met several incredible people through them, including Dalton himself! They also asked Blake to be in the Comet's calendar. He had a photo shoot down in the West Bottoms with Leo Gibson #14. We cant wait to see the calendar. I will let you all know where you can get one when they come out! We also were given tickets to go see the Comets home opener. Thank you Brian Harris and The Dalton Burner Foundation!! That was seriously the most intense game I have ever been to! It was awesome! I am totally a Comets fan now!! I hope we will be able to go to more games in the future! Blake was able to go down on the field after the game and get a lot of autographs on his Comets shirt!

On Sept. 26 I started teaching again for the first time in 2 years. I found a part-time job at a Montessori Day School in Blue Springs. Its been an adjustment. My hours are 845-130, so Phil and I are working opposite shifts. He does the morning routine with Blake, along with getting Blake off the bus and feeding him lunch. The boys take a nap around 130. I get home around 2ish and then I do the afternoon/bed time shift. I see Phil for about 30 min before he goes to work, that part really stinks. However, receiving a paycheck sure does make it worth it...and we still have our weekends!

October-

On Oct. 11 Blake's best buddy Marley earned her angel wings. Marley and Blake became best buds through the Rehabilitation Institute. After meeting Nikki-Marley's mom we learned that they both had the same type of brain tumor and both had right sided paralysis. They enjoyed doing their 'work' at therapy together, eating lunch together, and Blake loved making Marley laugh. They were quite the pair! A few months ago Marley's tumor quit responding to chemo, and radiation was not an option for her due to the location of her tumor. She touched so many lives during her short time here on earth and I truly believe she was an angel here on earth. We took Blake to her visitation and funeral. He really wanted to see Marley. When we went to go up and see her “sleeping” and he looked at her and said “Hi Marley”. She looked beautiful. It was a very sad day for us. Blake still talks about Marley, and tells me “I miss Marley” often. We talk about her being in heaven and how one day we will see her again.

On the 26th Blake had his botox apt. It was a hard apt, the older he gets the more aware he is, and the more tears we see. Dr. Roge did a great job at being quick, however it was still very hard to see him go through it. He still kept his sense of humor. That morning before we left for his apt, he found a fake mustache in our Halloween box. He wanted me to put it on him, so I did thinking it would be off before we left the house. Nope. He wore it all day...even through botox. He walked through Children's Mercy cracking everyone up. The doctors and nurses were laughing and Blake would look at them and say "whats so funny?" with the most serious face. It was hilarious. I asked him after botox was over if he wanted to take it off...and he looked at me like I was crazy. lol He kept it on all the way through his nap. He amazes me everyday. Never a dull moment. lol

Halloween is my all time favorite holiday. Every year I look forward to what costume Blake wants me to make for him. This year he wanted to be a “Inja Turtle” lol. Ninja Turtle Raphael to be exact. So off to the craft store I went. After planning on how to construct the shell, 3^rd time was a charm. His costume came out pretty well, I think. We also built a card board box maze in our driveway for our Halloween Party. It was a huge hit on Halloween. Only took us a day and a half to construct and paint it, and only a matter of hours to take it all down. We used about 255 boxes, and LOTS of tape!! Thanks to some great friends we were able to pull it all off! For the first time Blake went trick-or-treating in our neighborhood.As excited as he was to go trick-or-treating he was more interested in the kids hanging out at our house going through the maze,.We only made it to a about 10 houses before he decided to go back home. Lol Who needs candy when you can make new friends! He really is a special kid!

November-

This month is already flying by. Blake started back at therapy on the 2^nd. This has been our longest break, he hasn't been since camp in June. Starting Nov. 15^th he will be getting serial casting on his right leg. The cast will help improve his range of motion over a four week process and help his botox last a lot longer. I am anxious to see the results.

Blake has his routine MRI tomorrow morning. I will be sure to let you all know how it goes. Things have been so great over the past several months, I keep praying that it continues. Life has a sense of normality that it hasn't had in a long time...and its been nice! We are so thankful for all the memories we are making, and time we are enjoying with our little man. He is getting so big, and although I am sad that my lil guy is getting bigger, I am grateful for every minute of it! He is becoming quite the comedian. Lol I hope you continue following us on our journey. We appreciate all of your support and love!! Talk to you soon!

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Monday July 25, 2011

Life is good! After 2 summers of treatments and hospital stays, we are enjoying our first summer without them!! Although we have spent some time at doctors appointments, it's hardly a comparison. We spent the month of June in Constraint Camp Therapy. On July 8th we traveled to Houston for Blake's 1 year follow up. After a neuro-psych apt and an opthamology apt we had his MRI. His tumor is stable. Words cannot express the joy we feel. There is a lesion that the doctors aren't really sure about, the plan is to keep an eye on it with up coming MRI's. Blake's tumor has officially remained stable for a year! I am praying that his MRI's continue to show a stable tumor. God has been so good to us! I thank you all for all your prayers and positive thoughts. My little boy is proof that miracles CAN happen!! During our stay in Houston, we were able to see all of our Texas family. We weren't able to go to the Zoo or Children's Museum due to some scheduling mishaps, and the fact that I forgot to bring Blake's old leg brace. We picked up his new leg brace on Thursday-left on Friday. I only packed the new one...oops! His new brace has less support and is designed to help build muscle, so it works him harder. After a trip to the Outlet with my Aunt and Cousins on Sunday, I learned just how hard it works him. I ended up carrying him-all 45lbs-around the outside outlet because he was too big for the 'car' stroller my aunt rented. Lets just say lesson learned! lol We didn't have a stroller, or his 'supportive' brace. So our week was filled with both Phil and I carrying him. My back is totally paying for it. It was a really great trip. I was grateful that Phil was able to go with us this time. Phil was able to try out 'salt water' fishing with Cecil-my cousins husband. He had a blast both days even though they didn't catch anything worth keeping. Our Houston family is SO great! Its funny to me how Blake needing a 2nd opinion, us choosing MD Anderson, brought us to my family in Houston...who I had not seen since I was little. Now we are so close to them, I actually am sad that we only have to go down about once a year. I miss them all so much. Blake is loved by so many. It really amazes me how many people have been touched by his story and have fallen in love with our little miracle! I pray that he continues to fight and lives a long long life!! Thank you for continuing to pray for him, and us!! We love you guys!!

Sat-Mon July 2-4, 2011

This was by far the BEST 4th of July!! Not only did we spend the whole weekend with great people/family celebrating the 4th, we were also celebrating Blake having his port removed!! (It no longer worked) The unfortunate part of this was NO SWIMMING-due to fresh stitches!! However, it was just a small price to pay! It was seriously the best 4th of July we have had!! The previous 2 years we have spent the 4th away from home. 2009 we were inpatient at Children's Mercy, last year we were in Houston without Phil receiving Proton Therapy (radiation). A friend of a friend, heard that Blake hadn't been able to really celebrate for the past 2 years and so this very generous family donated a LOT of fireworks to us. I wish I had taken a picture before they were actually set off. Oops! I think you will get a good idea by looking at all the pictures. We started off our holiday weekend in Rich Hill, MO (my bff's mom's house). We ate delicious food, enjoyed great company and went swimming-Blake sat on a huge turtle raft and stayed dry! It was a great start. The next day we headed to Nevada, MO (bff's dad's) to enjoy a bbq, more great family and a firework show. We set off about half of the fireworks, our final one for the night was especailly given to us for Phil. A 16,000 Black Cat firecracker. It sounded and looked like a bomb went off. lol It was SO loud that Blake actually tried to use righty to cover his ears. lol I actually got a picture of it. I was pretty proud of him. After a great night we headed to Pomme de Terre Lake (Phils parents live there). We took his parents boat out, then had a bbq and more fireworks. It was great to be by the water and see all the fireworks going off around the lake. Blake truly had a BLAST!! Finally on Mon (the 4th) we headed back to Rich Hill. Phil had to head home since he had to work that night, so Blake, Christian(bff), and I stayed to celebrate with her mom in Rich Hill. We enjoyed her huge 4th party with more delicious food, swimming, and then went to the town fair and watched fireworks. It was the PERFECT holiday weekend. We feel so lucky to have such amazing family and friends. Here is a slide show of our weekend!! Enjoy!!

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June 29, 2011

Ready to go get his port out!!

Deb-Blake's favorite Interventional Radiology Nurse!

Today is a day worth celebrating!! Blake had his port removed!! His port stopped working, so weird because we have NEVER had any problem with it. It been in since Feb 2, 2010 and now June 29th its being removed! Its almost as though his body said "I dont need this anymore". His doctors are all ok with it being removed since all we have used it for lately is sedation for MRI's. They also let us know not to worry, that if God forbid we do need it again, it wont be difficult to do. We of course, are praying that we NEVER need it again! Blake officially has NO PORT and NO G-TUBE!! In a few weeks we will find out if his
tumor is stable...praying for good news!! I will keep you all posted once we get his results!!

Blake was spoiled by the nurses!! 5pk of HotWheels, coloring book, crayons, & Sponge Bob pen!



This is what Blake's port looked like. (not actually his)

Sat June 25, 2011

This is one of the pics I took for his invitations!

I have always loved birthday parties! There is something magical about them. For the past few months I have been gathering, sewing, painting, sewing, painting, and gathering. lol After many late nights and long days...I am ready for Blake's 4th Birthday Party!! Today is the day! And I am proud to say, all my hard work paid off! This was by far his BEST birthday party yet! Several months ago Blake told me he wanted a Batman Birthday. So I started planning a Superhero party...water grenades, Batman cake, superhero silly bands, water guns, comic books, capes, superhero game, masks, a king size sheet for a photo backdrop, clothes pin superheroes. Ya know just what every party needs! lol Blake was so excited! I recruited the help of some of my friends, assembling goody bags, cutting out stars for the capes, cutting felt masks, etc. When Blake woke up this morning he was pretty calm. I don't think he realized exactly what was in store. Everyone started arriving at 2pm. Blake decided he needed to guard his presents...not sure why. lol All the other kids were out side playing. My grandparents stayed in with him, until we finally convinced him it was ok to come outside. He is so silly sometimes. This was the first year he was excited for the presents, more than the party. He had a BLAST playing with all his friends. Seeing him smile just brightens my day! He is such a special kid. I am SO grateful for how well he is doing. All the kids played and jumped (we rented a bounce house) and then got a little wet from the water balloon fight. We came in to sing 'Happy Birthday' and have some cake and ice cream. Then everyone sat on towels outside eating cake while Blake started opening his presents. He was SO excited! He got a lot of really cool stuff. We really have amazing family and friends!! It was such a great birthday. Not sure if I will ever be able to top that one...but its worth a shot! Blake deserves it! Here is a slide show I put together since I wanted to share all the photos with you! I hope you enjoy!!

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Thurs June 16, 2011



Waiting patiently to blow out the candles

Today my little guy turns 4! Time is a funny thing. Sometimes the days pass so slowly, but then all of a sudden you realize how much time has passed and wish to go back and savor those little moments. I am so thankful for the last 2 years and how far my little man has come. He is our little superhero...kicking cancers butt!! Although financially it has been stressful, the days and hours I have been able to spend with him are PRICELESS. He is such an amazing kid and I love him SO much! Lately I have been looking at the little boy he is and dreaming about the man he will become. He makes us so proud. There is so much love inside his heart, so much determination. He has taught me so much about life, how to enjoy each day, live in the moment, not take things for granted...just to name a few. He was only a few days older than 2 when his fight with cancer began. Now at 4 he is so strong, and although he still has a brain tumor, it seems as though he is winning his battle. I keep praying that he will live a long long happy life. Be able to do anything he can dream up. Of course I have BIG dreams for him...he is somehow going to change the world!

Making his wish...

Birthday breakfast

We started his birthday off by singing 'Happy Birthday' to him. He is all of a sudden embarrassed when we sing him that song. lol So we got him up and he wore his special birthday 'Batman' shirt. Dad picked up donuts for his special bday breakfast. We put 4 donuts on a plate with 4 candles and sang 'Happy Birthday' again. He loves blowing out candles, still didn't like us singing. haha

Very excited to be making cookies for his friends!

Blake loved the stars...

All decorated and ready to eat! Mmm!

Then we headed to his therapy camp. We made homemade sugar cookies with icing to share with all his therapy friends. I let his therapist know that I was going to pull him out early to have a 'birthday date' with me. Although our plan didn't quite work out the way I envisioned it to, we had a great day nonetheless. 

Once his 'camp' was over we headed to Crown Center to eat at Fritz's. This was his 1st time. He LOVED it! (For those of you who don't know, its a restaurant that has a train track around the whole place, and a train delivers your food to you after you order it on an old school phone-super cool huh?!) Afterwards we went through ZOOM toy store, note to self: do NOT do that again!! Everything is WAY overpriced...I mean WAY overpriced. lol After a slight meltdown, I ended up carrying him out of the store crying. I felt horrible. lol 


We then headed to Children's Mercy for a last minute brace fitting appointment at Children's Mercy. He is getting fit for a new leg brace. We went to see Lynda, she is our favorite, and Blake brought cookies to share with her too! After picking his new brace pattern (pink and orange camo) Lynda cast his leg. In just a few weeks it will be ready! Then we were headed to Toys R' Us. I told Blake we would go pick out a little something for his birthday. After looking around for a while, he decided he wanted Legos. Lucky for me they were buy 1 get one 50% off. He picked a police motorcycle and Police canine unit set. Only $13 for both! Now thats a deal! lol Finally we were on our way home. It was a fantastic day!

Mon June 6, 2011

Its been a crazy few weeks...lets catch up!!

Memorial Day weekend was a lot of fun! We went to Nevada, MO to celebrate a good friend of ours birthday. Then on Sunday we had a little shindig here with some friends. Blake had a BLAST both days! We have some AMAZING friends! I love BBQ's with good people!



Phil, Blake, Mike and Craig



He has great aim...LOL

June 2 was our first givingSOLO event! The gallery at 19 Below hosted its 2nd annual Childrens Art Exhibit and Auction (last year we were the recipients of the money raised). This year 100% of the proceeds are going to our organization givingSOLO! It was a huge sucess!! Blake's painting went for $100!! I love that his paintings are such a hot item! Last year it went for $100 too!! I think we might have ourselves an artist in the making!! lol If you havent already checked our website out go to http://www.givingsolo.org/!! You can learn all about us!!

Blake spent a lot of time in the pool this past weekend. I am so excited, since last year he wanted nothing to do with the pool. Well, he liked the big inground pools-but not his kiddy pool. He wants to be outside all the time, and of course in the pool. So looks like we will be spending our weekends in the driveway in the blow up pool, soaking up the sun and maybe I can read a few books!

Today was Blake's first day of camp. He loved it! I am so glad because he will be going 5 days a week for the next 4 weeks. lol They tie-dyed tshirts and ate snow cones. All while leftie was cast up-making him use righty. He didnt seem to mind at all. I LOVE all of his therapists. I will be honest and say I wasnt exactly looking forward to being up there 5 days a week, but I know how great it will benefit Blake, which totally makes it worth it.

Thurs June 2, 2011

We had our first official givingSOLO event! It was such a success! There were so many amazing pieces of art done by some amazing kids. We also had a ton of community donations that were a huge hit! Thank you to all of you who made it out to help support us tonight! A lot of work goes into putting this event together, Joy Moeller we are in awe of all that you do! Thank you for starting this event, and doing it again and again! It is by far my FAVORITE event!! Here is a little taste of the event...you HAVE to be there next year!!

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Friday May 27, 2011

I totally meant to post yesterday. However, with the way my week is going I am lucky to get on here today.

Ok, so last post Blake's port wasn't working. We went back to Children's Mercy yesterday and they attempted again. With it still not working we were sent to Radiology for a chest scan. They pushed a liquid into his port line to see if they could see the obstruction. Oddly enough, there was nothing in his line. The radiologist thinks that scar tissue has formed at the end of his line, causing a trap door.  They can push fluids in his port but when they try to draw blood, nothing. So basically his port is useless. So here is the good news, next week our oncology nurse is going to schedule a port removal! YIPEE!! No more port! This is great news, although I have had my concern about 'what if the tumor starts to grow?'. Basically though, his port is no longer useful, so we would have to replace it anyway. If his tumor would, God forbid, start growing we would just put in another port. So all in all-I am one happy mama!! :) I honestly think its his bodies way of saying 'Hey get this thing out of me-Im all better!' lol.

My tough guy!

Today was a rough one for lil man. We were headed down the stairs to go to therapy and Blake was half way down our basement stairs when he fell. I was several steps behind him, with my arms full of everything-therapy bag, art for our show June 2, laptop bag, and purse. So as I am following behind him I totally couldnt get to him fast enough. When he fell-it looked REALLY bad. I thought for sure we were gonna end up going to the ER. The down side to having right sided hemiparisis-he cant catch himself. When I picked him up off the basement floor he was crying pretty hard. For those of you who dont know him very well-he is a tough kid-he falls a lot and most of the time he gets up and keeps going without any tears. So since he was crying pretty hard, I was scared. I yelled at Phil-to let him know what happened-and then sat in our basement holding Blake, waiting for him to let me know he was ok. Once he was a little less upset we looked him over. The poor kid had a 'sandpaper' burn on his neck from the steps, a bump on his head, and a knot on his shin. Not nearly as bad as I though it was gonna be-but nonetheless a painful fall. We were late getting to therapy, but the time I spent making him feel better was totally worth being late for. He went to therapy and did his work, he was a little crabby-but did pretty well with group, pt and speech. He missed his OT apt cuz it was first. Thats okay though. When we finally made it back home-he crashed out hard. I am so glad he is ok.

Poor kiddo-rough day of falling, getting poked and having tegaderm torn on and off his tender skin.

Wed, May 25, 2011



right before the temper tantrum set in...

Life sure does have a funny sense of humor. We had quite the day today. We started the day off with Blake waking up at 6:30. Way earlier than his normal '7:45 wake up call'. I should have known at that point it was going to be a long day. lol So we got ready, Blake only wanted his 'pink' milk (strawberry) for breakfast. He normally has a big bowl of cereal-boogers; ie crunch berries. He has quite the imagination these days. lol We headed to Children's Mercy for his 1st dentist apt. We talked about it for 2 days, I thought he would do great since he loves having his teeth brushed. When we get there I realize I don't have a 'dental' card. Ugh. So after a few phone calls to our insurance company, Phil, and finally our normal dentist, I am able to give the receptionist enough info. We get called back, and as soon as we are in the room Blake has a melt down. Crying and not cooperating. I was a little stressed. I didn't know who this kid was-he was not acting like the Blake I knew. So after the assistant left the room, I calmed Blake down and we had a little talk. It actually worked. Yippee!! So he cooperated with the dentist. She checked out his teeth-NO CAVITIES!! I was so happy. She had just finished a fluoride treatment when we find out that there is a tornado warning, we all have to go to the stairwell in the basement of Children's Mercy. Oh boy! So down we go with all the other patients. We are all crowded in the stairwell and Blake decides he wants Mac 'n Cheese. Oh no! Let the 2nd temper tantrum of the day begin. He is crying and I am trying my best to calm him down, thank god for technology. I pulled out my phone and let him play a few games. Phew. 10 min later, the tears are back. lol We were in the stairwell for almost an hour. Finally a nurse came down with a basket of Teddy Grahams and Gold Fish. THANK YOU!! That kept Blake quiet for a few more minutes. Again-this is NOT like him. He is normally so good. Must be the weather! lol Ok so we finally get the okay to go back to our apt. We find out that we are done with our apt. 

However, now have to stop by the oncology clinic for a port flush-which I had NO idea was even scheduled for today. I thought for sure it would be quick, right?! So we check in and I apply numbing cream to his port. We go back to the waiting room and Blake is happy to be playing with the toys. Then the nurse actually gets to us pretty quick-a fast poke and he is ready to be flushed. Well, unfortunately Blake's port wont flush. Shoot! So they call in a medication that will dissolve the blood if its clogged in his line. In order to do this we have to wait 30 min for it to do what it does, then if it still doesn't flush we wait another 30. No flush-Blake's port isn't working. Aw man, and then to top it off Blake pees his pants. I have NOTHING with me-remember I thought this was going to be a quick dental apt. lol So the nurse finds a pair of undies and pants that fit Blake. I am SO grateful!! Also at this point I am starving because its already 2:30, so we run down to the cafeteria for a quick snack. When we get back just in time to do the whole process over again. Another hour passes. Still NOT flushing. There is talk about us getting pictures of his chest. Due to the time we cant get it done today so our nurse Paige decides to de-access him and let us go home, we have to return tomorrow to get more tests done. His port still isn't working. I am praying that tomorrow we will figure out what is going on. I guess they are going to flush some type of fluid that will show up on x-ray.

I probably shouldn't be complaining, but sometimes a girl just needs to vent about her bad day! lol Thanks for letting me do that!

Ok so on a brighter note, I have been applying for financial assistance to help with some of the medical bills, Blake's braces, and to help with our trip to Houston in July. We received a call yesterday from an organization called 'Be Head Strong'. They sent us $500 in gift cards to Target. How great! A lot of the brain tumor/cancer organizations that I have applied to have stipulations that prevent them from helping 'glioma' tumor patients (havent found a reason yet). Which happens to be the type of tumor Blake has. Others are not offering help to new applicants due to the economy. I know God has a plan for us, and wont give us anything we cant handle. My faith remains strong, although I do have my days when I don't know how it will all work out. Then I remember its all in HIS hands. I continue to look for a job that will work in conjunction with Blake's schedule. A friend of mine might need childcare for her daughter 3 days a week starting in August. So my fingers are crossed that it will work out. Until then, babysitting jobs are helping and Phil has been able to pick up some overtime at work. I will keep you guys posted on how tomorrow goes! Thanks for all your prayers for Blake and our family! xoxo

Monday May 16, 2011

"Fight for Blake"

May is Brain Tumor Awareness Month!! I have bracelets that say "Fight for Blake" on one side and "Catch Me Running" on the other. If anyone would like to show their support by purchasing a bracelet they are $5. I have 3 different sizes small(child) medium(adult) and large(Man Sized). Its an easy way to raise awareness! They are grey and lime green!





Blake continues to fight his brain tumor, he had his MRI a couple weeks ago, and everything continues to look stable! Thank you God!! If we can make it to one year with NO growth it would be a really great. Blake is doing fatastic! His birthday is approching and all he talks about is Batman and superheroes. lol So, I get to figure out how to make a 'Superhero' party. Last year we celebrated his birthday in Houston, so I am excited that this year we will be home for the celebration. His birthday is June 16, but due to fathers day being the 17 I have decided to have his party on the 25th. He is already super excited about his birthday.

Waiting for his numbing
cream to take effect.

Blake is doing great in school, he is on break from rehab since May 7th he got botox. He received 5 in his arm/thumb, 3 in his back and 2 in his leg. He was not happy about it. Its such a hard thing to watch your child go through something that is painful. Once the last injection was done I picked him up and held him-and he was fine within minutes. I love that he is a momma's boy! I know it will change soon, so im soaking it up while I can. His next MRI will be July 13th in Houston. I am so excited to go to Texas and see all of our family there. Phil gets to go with us this time-so that makes me really happy!





All the gear...



Dr. Rinaldi injecting his leg



Poor kiddo!





As many of you know my best friend started an organization called 'givingSOLO'. You can go to the website: http://www.givingsolo.org/ and check it out. We have our 1st event coming up June 2nd at The Gallery at 19 Below. They are hosting an Childrens Art Exhibit and Auction that will be benefiting SOLO. We are very excited. Blake has created a masterpiece for the show-and it is quite the masterpiece! I am gonna have a hard time seeing it go! Also, Phil and I are putting in some art as well. It is going to be such a fun night! Blake starts constraint camp June 6th. Its a 5 days a week camp-for 4 weeks. I am just praying the gas back and forth doesnt break us! We are due for another AFO apt at Children's Mercy to look into getting a new AFO for Blake's leg/foot. The boy just keeps growing. lol Lynne, his PT, said it might be time for Blake to get a new style of brace. That is exciting, because that means his leg is getting stronger! I keep praying that one day he wont need the brace anymore and he can walk like all the other kids-brace free!! Its funny to me the things I look forward to, new braces, Blake being accepted into PT and OT at school lol. I am so grateful for all the strides Blake has made this last year and I look forward to many more!!

Tuesday April 26, 2011

Blake hunting eggs



Kite Festival

Happy Spring! We have really enjoyed the warmer weather, when its not raining. lol Blake is doing great! He continues to go to therapy 2 days a week, and preschool the other 3 days. He still LOVES school, but now realizes that therapy is hard work. He is getting so big! We went to the Lees Summit Kite Festival this year. It was pretty fun! Blake and his cousins loved seeing all the huge kites! Blake is obsessed with superheroes right now-well Batman in paticular. He found a yellow mask in one of his toy boxes and hasnt stopped wearing it since. lol We had a fabulous Easter! The Easter Bunny came and dropped off sand in Blake's sand box. Blake thinks its his 'beach'. He keeps saying he is going to the beach-and then says we need to go to Texas. lol He is really starting to remember things. Its so amazing to me how far he has come in the last year. I thank God everyday! Blake is truly living proof that miracles exist! Blake has his Kansas City MRI tomorrow. I am praying for a continued stable tumor! We are due back in Houston in July. June is going to be a VERY busy month for us. Blake is going to a 'constraint' camp 5 days a week for the month of June! It will be very beneficial for his right arm/hand. Due to the price of gas-we will pull him out of therapy for July. He will also be getting Botox on May 7, and a new AFO-leg brace in June.



Coming down the slide!



Mmm!!



All the cousins on the Whistler side with their Great Grandparents!



Batman



Thursday March 31, 2011

Ready for his 1st day!

 Happy Spring!! Blake is LOVING school!! He also LOVES the school bus! The first week was a long one for him, so I kept him home Friday. He was a major gremlin all day Friday-I'm pretty sure his therapists would thank me if they saw how he was. lol This week is going a lot better, we moved his bed time up 30 min and that really seems to be helping. I have been using my new "free" time to work on the house. We closed out our storage unit today-so in prep for that we built wooden shelves in the garage. We also decided it was finally time to paint our cabinets in the kitchen. Lets just say that next week I am not doing anything that involves labor...lol. I have been exhausted! However, all the hard work paid off-the kitchen looks great, and all the stuff from storage fit great in the new shelves. No more stacking unorganized boxes up!! Woo Hoo! Now its time to have a garage sale. I have so much stuff I need to get rid of. I think I will wait a few weeks before I get into that project. :)



Giving dad some love!



All buckled up

Blake's next MRI is coming up in April. I am really anxious to see the results. I keep praying that his tumor remains stable-NO MORE GROWING!! So far the Proton therapy has been working great! Shrinking his tumor tremendously! The next time we see our Neurologist I am going to try to get pictures of his tumor before and after to show you. Words just don't do it justice! One more thing-mark your calendars: Thursday June 2, 2011 is our Solo Children's Art Auction! I will be posting more details VERY soon!!

Heading to school

Monday March 21, 2011

Greetings! So I know I have a lot to fill you all in on. Its been forever since I've posted an update. But first I want to let you all know that today was Blake's very first day of preschool!! He, of course, had a fatastic day. We have been preparing him for the last 2 weeks. He was SO excited when he saw the little school bus driving toward our house. He got on the bus, they have safety harnesses, and was smiling. I kissed his forehead, said goodbye, and he stopped me and said "Mom I give you kiss" so I leaned over the seat and he kissed my cheek. My heart melted and I got all choked up. lol He is so grown up these days. I am so proud of him. So I got off the bus and waved as they drove away. His school starts at 9 and ends at 12. The bus dropped him off at our house at 12:45. He was all sweaty and pink cheeked from the bus ride. So cute!! We had a great day talking about how much fun he had. He cant wait till tomorrow to ride the bus again. I am SO happy he loves school!! He is attending an Early Childhood Center down the street from our house. He will go Mon,Tue, Thur. On Wed & Fri he will still attend rehab. Then for the summer his rehab schedule will pick up. Its such a great thing for him to get to play with other kids, and for me to have some "me" time for now, until I find a pt job. Currently we are working on the house, organizing and spring cleaning. We really need it! haha

Ok so for the past month here is a brief catch up: you could say that things have been pretty busy around here lately! I celebrated my 29th birthday (2-12)...we went to one of my favorite restaurants, Winsteads, for dinner. It was great! Then we headed to the Sprint Center to watch Monster Jam. I have always wanted to go to a Monster Truck show. It was awesome! Blake LOVED it! We also took Blake to see Gnome & Juliet in the theater the next week...he hasnt been to a movie in the theater in a long time. Thanks to my friend for the free tickets! Rehab has been going well, another reason we are now down to 2 days rather than 3!! GO BLAKE!! Blake has been working really hard. Im still shocked at the drive he has-its been almost 2 years now that he has been going to rehab and he still gains strength back daily! Such a trooper!

For several months now I have been busy working on our new organization-givingSOLO. We are working in conjunction with Servant Christian Community Foundation (SCCF) and Helping Hands. Our mission is to provide the link between children stricken with brain cancer and the best possible health care options. The funds we raise will help provide resources to these families and the community about pedatric brain cancer while offering awareness, support and funding when needed. We had our first official meeting Jan 29th. We have been meeting on the 3rd Sat of each month from 5-8pm. We might change the day and time...I will let you all know if we do. If anyone would be interested in joining we need all the help we can get. There are SO many things we need help with. There is a lot of work that goes into starting an organization. We hope to be our own charity soon! Blake is obviously the inspiration behind the organization. I am even going to be starting an online support group, its in the works! :) Hopefully to grow into more. I want to start small and grow into something bigger! Ok so exciting news!! Our very first event as Solo will be Thurs. June 2. Its an Art Auction. 100% of the proceeds will go to Solo!! :) If anyone would like to be a part of it-please let me know. This is a children's art show. The gallery 19 Below did an art show to benefit my family last year, and has decided to do it again, this time for Solo. 19 Below has been SO generous!! So here is what we need: children's art, art for children, this can be ANY type of art!! Handmade hats, clothes, jewelry, you name it we will accept it! There is a $10 hanging fee for each piece or $25 for 3 pieces. Again, 100% goes to Solo!! If you want to donate, you can contact us through our website http://www.givingsolo.org/. I am really excited about this whole organization and the direction we are headed.

Thanks for all your continued support! If you want to follow my blog-there is a button on my page that says 'FOLLOW'...please sign up and follow me-sorta like carepages...only WAY cooler!! :)

Solo - Blake's Battle with Brain Cancer - Full Video

My best friend made this video for us, to tell Blake's story. I hope you all enjoy it as much as we do! Feel free to share it!!

Sun Jan 30, 2011

Front yard the night before we left...lots of snow

Sleeping off the sedation after his MRI

Hello my faithful readers! We are back from Houston. We had quite the trip. We left last Thursday morning, right after we got all that snow. Ugh! lol The roads were ok through Missouri, just had to go REALLY slow. However when we got to Oklahoma the roads were covered in black ice, and it was kinda scary. I was totally missing my 4 wheel drive although it probably wouldnt of helped. I invited my dad to go with Blake and I. It was a surprise for my aunt. She had no idea. They are cousins and haven't seen each other since 1994. lol Needless to say they were both excited to see each other. I love going down to see them. I was so happy that I was able to see everyone this trip. Blake loves them all so much! Our apt was on Monday morning. We left my aunts house an hour and a half before our apt, and due to the traffic and rain, we were almost 30 min late. We made it to the MRI on time though, thank goodness. After Blake was done with his MRI we ate the lunches we packed, and then went to our follow up apt. We met with a doctor who explained Blake's MRI. His tumor is still stable! They did a lower contrast MRI so they weren't able to tell us for sure if his tumor is off his brain stem, but the fact that his tumor has shrunk so much is good enough for me! He said there is always a chance that the tumor could come back, but its just a chance. So I will continue to pray for a stable tumor. I am going to try to get a copy of the images, one from before Proton therapy and one now. Words cannot explain what the images show. I truly feel Houston was our miracle! Blake is doing so great! I am looking for a pt job. Its been difficult since he is still going to rehab 3 days a week, and in Feb he will start preschool for half day on the days he isnt at rehab. I keep praying that something will cross my path. God has a plan and i know he will open the door when the time is right. Phil is trying to pick up overtime at work, so that will help. We have faith. Oh I almost forgot to tell you guys, Blakes new plan after his 1 year apt will be MRI every 4 months instead of every 3, and we will only be going to Houston for our yearly apts. So that is good news! I am sad that I will have to wait a year to see my Houston family. I might have to take a trip down just for fun. lol I love them so much-it stinks that we live so far away from each other. Well, thats all for now. So I will talk to you all soon!! xoxo

Jimmy and Blake-so happy he just got bubble gum ice cream!

At Chuy's with the crew!

Fri Jan 14, 2011

2nd Day in Florida...already on the beach!!

Happy New Year everyone!! So far this year has been great! We started off the New Year with a 24 hour drive to Palm Bay, Florida. Blake was such a trooper in the car. I cant believe that he rode the whole way with very few fussing. lol He is one amazing 3 year old. We stayed with Christian's Aunt and Uncle-who are the sweetest people! They took very good care of us! The weather was fantastic-75 degrees most days! Monday we went to Cocoa Beach, and Ron Jon. Phil was looking for a new hat, somehow Blake and I found hats and Phil had no luck. lol Blake loved the beach, and with sunny weather it was the perfect day! We went to Disney World Tues-Wed. It has been a childhood dream of mine, and I must say it was just as great as Id imagined it would be. Blake had the time of his life! He loved seeing all the characters, even though it was quite the challenge...we stood in line for an hour to see Buzz and Woody. lol He was able to meet Pirate Goofy at Magic Kingdom, Handy Manny, Little Einsteins, Buzz, Woody, McQueen, and Mater at Hollywood Studios, and Mickey, Donald, Goofy, Thumper, and King Louie at Animal Kingdom. We were able to see a lot of the other characters, however they were done by the time we saw them. We stayed in the Caribbean Beach Resort, in a pirate room. Blake LOVED sleeping in a pirate ship, the room was totally done in Pirate theme. Very cool! We all had so much fun! We decided to go back to Cocoa Beach on Thurs. The weather was a little chilly, we walked through Old Cocoa Beach-had lunch at a french restaurant on their patio. It was really nice. Then we headed back to the beach-it was chilly but still so nice. Blake played in the sand, we collected a couple sea shells. It was the perfect end to our vacation. We left at 4am our time to come home Friday. Arriving home at 4am on Sat. We did stop in St. Louis to eat a snack with Christians brother and future sis-in-law. We really enjoyed the week.

We leave next Thurs for Houston. I am really anxious to hear what MD Anderson will say when they see how great Blake is doing. I also have a ton of questions for them. I am looking forward to spending time with my Houston family. I have missed them SO much! Blake is getting excited for our trip too! You would think he is sick of long car rides! 2 big ones this month. However, he doesnt seem to mind the long rides!
Our year is starting out great! I pray that it continues. Thank you all for all your support-you guys are amazing! Love to you all!!

Walking into the Magic Kingdom...Blake loved the castle

Dumbo

Pirate Goofy-what a signature!!

A long wait to meet these guys!



Finally meeting McQueen and Mater



Christian and Blake hangin out on the beach on our last
day in Florida. Blake loved Cocoa Beach!