Wed Dec 29, 2010

Blake with his cousins, Gracie and Lauren, and marshmallow
teeth. The Danforth side Christmas!

Happy Holidays everyone! I cant believe in a matter of days 2010 will be over! What a ride it was for us! Blake has come such a long way over the last year and a half. Time sure does fly! This holiday season has been a great one for us! Blake is finally at the age of understanding Santa and the gift of giving. We made a few homemade ornaments this year, and let me just say he LOVED giving his 'surprises' to our family. lol It was so great seeing how much joy he found in giving the gifts-im a pretty proud mama! Dont get me wrong he still LOVES getting gifts, but it was great to see that he loves giving just as much as he does receiving. We celebrated Christmas with 3 families this year. Phil side-Blake had a blast with his cousins.



1st time bowling

He went bowling for the very 1st time and let me just say he kicked my butt! lol He always has a blast with his cousins. Next we spent Christmas Eve with Christian's  family. Blake loves all of her family just like his own. We are so lucky to have them in our lives. Finally we spent Christmas day with my family. Blake had a BLAST!! He is loved by so many, I am so grateful! He was sitting beside me playing with some of his 'new guys' and looked up at me and said "Im a lucky kid". Talk about break my heart. He is such a special kid, he melts my heart all the time. His words so sweet and innocent yet so genuine. We are preparing for our first ever family vacation...to Florida. I am super excited. I think its the perfect way to start 2011. We have been fortunate enough to have Christian's family to stay with while we are down there. So other than the gas, food, and souvenirs we dont have to worry about anything else! I am SUPER excited! We have always talked about going on a vacation, but then the time comes and we need to fix something on the house, or life just happens. I am going to try to plan a family vacation atleast once a year-even if we end up just going a few hours away and camping lol. I feel so blessed that Blake is doing as well as he is, I want to treasure family moments as much as we can. God has given us this amazing little boy who has put up such a fight-I want to live life to the fullest! I want to take advantage of all the time we now get to enjoy...I continue to pray that this tumor continues to die, and that it doesnt come back. He will probably always have the tumor-but as long as it remains stable-I am happy! He is getting so big, I look at him and see this little boy-full of happiness and life. I thank God everyday. He is such a miracle.

Blake, Kirsten and Mason-Blake side
Christmas. Silly faces pic!

I talked to Cheri from Rehab today and she let me know that Blake will continue to go to Rehab 3 days a week until Feb. 11, then they will take him down to 2 days a week. We will get him into a preschool program in Feb. on the days he doesnt have Rehab. So looks like life is beginning to get back to normal...well our new normal. lol If anyone knows of some flexible PT work, I could really use some ideas. I would love to find something I can do from home. But I am def open for some options. It would be for the times that Blake is in school/rehab. There will still be MRI's every 3 months, and trips to Houston periodically, so i need flexibility!!

Speaking of Houston, we go down for our next MRI Jan 24. I am very interested to see if his tumor is in fact off his brainstem or not. I also want to know what the chances are of his tumor coming back. And most of all I am SUPER excited to see my Houston family. We have missed them SO much!!
I hope the new year starts off as great for you as it will for us! I feel so blessed! Thank you for all your love and support, we love you all!! xoxo

Tue Dec 7, 2010

Blake feeding his new kitty

Oh boy oh boy!! I have some amazing news...we met with our Neurologist on Friday. We meet with him every 6 months, to review scans and understand things better. He is a great communicator! So we went in on Friday knowing that Blake's last MRI showed his tumor 'stable'. Dr. Le Pichon was reviewing his scans, he pulled them up one by one since our May scan. As he is showing us, Phil and I are shocked at the great difference since May. Proton therapy is killing Blake's tumor, and I mean its really shrinking it! He then went on to tell us that it 'appears' to be no longer on his brain stem. OMG!! Seriously?! That is the BEST news! I know its not 100% for sure, but the fact is that its dying! His tumor is dying! I am praying that this continues until there is no longer any tumor left to do any kind of damage! I know that this most likely wont happen, but a girl can hope right?! lol We are having such a great holiday season. Blake got a new kitty, im not sure if I mentioned that in my last post. Roxy is her name. She looks like a siamese snowshoe. She is super cute!

Roxy

We rescued her from a foster shelter. She ended up being a pretty sick kitty. She lost a lot of weight and was literally skin and bone. Our vet and the lady I adopted her from said it was unlikely that she would make it through Thanksgiving. Well let me just tell you that I didnt let that happen. I gave that kitty love, and fed her around the clock, she made it through Thanksgiving. I took her to the Vet the following Monday, the vet was shocked that she had gained a little weight. He gave me 2 more medications to give her and special kitten food. Let me proudly say that she is doing very well!! People seem to give up on sick things...but I have learned if you let them fight-they will. And it worked! lol Blake loves her, he is pretty good with her. Such a gentle giant.

My little reindeer!

Blake and an awesome Santa!

We attended the Leukemia and Lymphoma Cancer Society Christmas party at the Westin hotel in Crown Center. It was such a blast. Blake made reindeer antler headband, decorated cookies, took our picture in a photo booth, rocked out with Mr. Stinky Feet, met Santa, and got to pick a present to take home with him. It was such a great afternoon. Blake loved meeting Santa. I thought at first he would be scared of him. However, I was very wrong. lol He ran right up and sat on his lap and had quite a long conversation with him. I have no clue what they talked about...but I guess its between Santa and Blake. :) This is gonna be a great Christmas...I can feel it! We are looking forward to a MERRY Christmas, we have lots to celebrate! I am so thankful for all the continued prayers and support. We live off both! lol Blake is still fighting to use his right side, but we are still going to therapy 3 days a week for 5 hours each day. He is doing great! My hope is that by summer he will have made enough gain on his right side that we can put him in preschool, and maybe I can get a part time job. Wouldnt that be just fantastic. Im not sure what I am going to do yet, but I wanna help other families going through similar situations. Who knows. I know God has a plan for me, and I know he will open the door when the time is right!

Tue Nov 23, 2010

Happy early Thanksgiving everyone!! We are looking forward to spending time with our families. We are heading down to see Phil's family tomorrow after rehab. They all live down at Pomme de Terre. We will be staying through Friday. Saturday night is Thanksgiving at my parents house. I am so excited for pumpkin pie. Mmmmm!! I am so grateful that we have SO much to be thankful for this year! Blake is doing really well. We started back up at rehab today, our 2 week break was great. Blake is getting so big so fast. I am starting to miss my lil man. He is a flirt. He has been saying all kinds of funny things lately. I need to start writing them down. He is so much fun these days. He loves playing with his imaginex stuff, and cars of course. He is getting to be so independent. We are currently working on potty training. So far its going pretty good-slow, but good. He isnt telling me when he has to go yet, Im hoping that will come soon. He does pee on the potty most of the times I sit him on it. I was so proud of him for wearing underwear to rehab today and not having an accident until we were on our way home. So from 8 until 230 he stayed dry, and peed on the potty twice. I cant wait till he has the whole potty training thing down. Its a lot of work.
Tomorrow they are going to cast his arm, luck for him they are out of the sock that goes under the cast, so he gets one that will come off and on. Last time when we tried this kind-he knew it could come off, and wouldnt do the work. I am hoping since he is older, we can explain that he has to wear it until bath time/bedtime everyday. He has been listening to the therapists about his tape, so Im hoping the casting will work the same. lol
I hope all of you have a fabulous Thanksgiving. I am so thankful for all your continued support and prayers. We have had a long year-and having you there for us has been such a blessing. Thank you all for sticking through this with us. I am hoping next year continues to bring us good news. I also hope Blake continues to make progress with his right side, and gaining more of it back. He is such an amazing kid. I am one proud mama!

Sun Nov 6, 2010

Ok so I said Id post soon! So here we go!
Good news is always so much easier to write about! We had our oncology apt on Thurs. to get the results to Blake's MRI...and his tumor is STABLE!!! I cannot tell you how happy we are! I am so thankful for all the prayers and support! Blake continues to make gains, he is one happy little boy! November is going to be a great month, I can just feel it!
This past weekend I went out with Megan-who is about to pop! lol She is due Nov 27-with her 2nd lil girl. I am so excited! I cant wait for my new lil neice to be born-Avery Taylor. Megan had asked me to take pics of her while she is pregnant-so Sat I took Megan out for her shoot-let me just say I had a blast! I am pretty happy with the pictures. I posted them on my Facebook-if you wanna take a look. They are in my 'Photos by Me' album. I am trying to get back into photography. I started to a few years ago and slacked off due to life and what not. However, I am ready to get back out there and capture life! Well, actually so far I am just doing portraits. But who knows-possibilities are endless!! Im enjoying myself!
I will let you guys know how Blake's botox goes on Thurs. I am looking forward to seeing the results! Talk to you all soon!!

Tue Nov 2, 2010



Blake LOVED painting faces



I am so sorry I have taken so long to do an update. We have had such a crazy, busy October. It was a great month-just super busy! We had 3 benefits for Blake in October alone. We are so grateful for all the continued support. It has been a year now since all this has happened, and knowing that we still have the support of all of you means SO much to us! Blake is doing really well. He is talking more and more each day. If I could only remember all the funny things he says. He has quite the sense of humor. His balance is a lot better-he doesn’t fall nearly as much anymore! I have SO much to tell you!




Junk 4 Jackson-garage sale



During the month of Oct. we were able to meet so many amazing people! Our month started with Junk-4-Jackson‘s 4th Annual Garage Sale. We met Denise through a mutual friend. She was looking for a child to be the honorary recipient of the sale since her son died in November of 2009 from brain cancer. We felt so fortunate that she chose Blake! Her son’s story was so touching, and we had a lot in common. She is such a strong and inspirational woman! We also met a ton of people through Junk-4-Jackson. Just a few of the people who were touched by Jackson and his story formed a group called “Friends of Jackson” in order to help raise awareness for childhood cancer! They are all such amazing people! We have a whole new support group…everyone fell in love with Blake! He is seriously one loved little boy! He had so much fun at the sale. He loved the fire truck; he didn’t want to get out. Channel 9 came out and got some footage of Blake in the fire truck. We missed it. L We are still trying to find someone who recorded it… Channel 5 also came out and did an interview with Denise. I am so amazed at how many people donated their time and ‘junk’ for the sale. The sale had some great attractions: Slugger, KU band, soloist, guitar player, moonwalks and SO much more!! It was a blast!!

Blake watching the pool tournament

After the sale we headed down to Nevada, MO for a ‘Catch Me Running’ benefit. For those of you who are not familiar, Christian has started a non-profit organization in Blake’s name to help families of children diagnosed with life threatening illnesses. We have received a lot help from Christian and her events. She is doing an amazing job; it’s a lot of work to get a foundation up and running. Her goal is to obtain 501(c)(3) status in the next few months. This has been a dream of hers; she was waiting to find a cause. Lucky for us, Blake is now that cause. Her passion for this organization is so incredible! I look forward to working with her to help other families down the road. It’s such an amazing thing to give back and help people who are going through similar situations. Ok-, back to the CMR event in Nevada, lol. Christian, her dad, and step-mom hosted a dinner, auction, and pool tournament. We were interviewed live on the Nevada radio station prior to the event. I must say that small towns have some of the BIGGEST hearts! There were only about 40 people who attended-but let me just say that with all the love and support, you would have thought there were a hundred! Nevada will always hold a special place in my heart. It reminded me a lot of the dinner we had in Paola, KS. The community of a small town is amazing to me…everyone is there to help you out like you are family. It’s truly inspiring!

Blake as Two Face

We had a week off in-between these events and the Halloween party. Thank goodness! We all worked really hard on the details for the party. Halloween is my absolute favorite holiday. I take pride in making Blake’s costume, as well as mine. This year I made Blake’s, Phil’s, and mine, along with helping Christian with hers when she needed me to. I am pretty proud of the turnout! Blake was Two-Face (from Batman), the Tommy Lee Jones version. J He looked the part! We originally planned his costume off the bald spot he had from radiation; however, his hair had almost grown back in the few weeks before Halloween. Lol So the night before Halloween, we shaved off the ‘new’ hair. I know you are thinking we are crazy, but we did shave the remaining hair off Monday morning. Lol Oh, and I actually saved the ‘new’ hair in a zip lock baggy. I know I’m weird. I have to keep it for the baby book! The party was a hit! Phil made an inflatable maze-so cool. My dad was the bearded lady at the kissing booth, SO creepy lol. Jon’s dad, Tom, was the mad scientist. He made this really cool game, which was a huge hit with the kids. We had some really great volunteers. We couldn’t have done this without their help: Sara-photography, Brooke-pumpkin painting, Jackie & Janet-entry table, Jeff & Kelsey-face painting and tattoos, Katie-our salon scare dresser, Phil and Jon-the maze coordinators, Megan-pregnant vampire @ the vampire tea party, Kathy-mad scientist assistant, Rebekah-games, and-of course-Ted at the Veterans Hall, who donated the space to us! We are so thankful for all the help and hard work! Also, a big thank you to everyone who came and enjoyed the party! Without you ,we wouldn’t have a party. I love that everyone dressed up! The costumes were so great! I will be posting pictures soon! I LOVE Halloween!!



Our amazing crew that volunteered for the party!







So, after our incredibly long day Sunday, Monday we had to be at CMH by 7:45am for Blake’s MRI. I am praying that we get good results. I’m a little nervous…I always am even though we have had good results since Houston. We find out Thursday the MRI results, so I will keep you guys posted. This month is another eventful one-MRI, a short break from Rehab, Botox, CMH rehab follow up, return to Rehab, Cast Blake’s good arm again, and Thanksgiving. Whew. I think that’s all. Life remains as busy as ever. Oh, and did I mention we are trying again to get Blake into the school district’s special preschool program? Lol It seriously never ends! We have SO much to be grateful for though. I have such amazing supporters and family who love us. I know no matter what is thrown our way, we will make it through…with a positive outlook. God has a plan for us!!

I will talk to you all soon. I promise I will try my best to get back to updating you a little more frequently!! xoxo

Sat Oct 2, 2010

Happy Fall everyone! I have tried to sit down and do an update several times over the past weeks, and I just never could finish my post. lol So, I have a lot to update you guys on. lol We have been pretty busy! We went out to the Rennisance Festival on Sept 18-it was rainy but Oh so fun! Blake got a unpainted sword, we are going to paint it together soon. He had a blast with the petting zoo. He also got his face painted-a batman symbol on his cheek! We were drenched and muddy but it was totally worth it. Christian got us in free, thanks to one of her school friends.

On Monday Sept 20-I got into my very first car accident in 10 years. Ugh. This one was considered my fault, although I have NO idea why the guy infront of me stopped when we had just started going through a green light. Oh well, thats what insurance is for right? lol My car got the most damage. Its going to be hard not having my car for a week-but at least Christian is here to help! Thank god! We also were able to go to the Make-A-Wish Birthday party and Balloon Glow(hot air balloons). It was a lot colder than we anticipated so we only stayed for a short while. Blake had a lot of fun though. His whole face was painted like Batman. He loves Batman right now! The 26th Phils sister and 3 nieces came up for a cook out at our house. Blake and I havent seen them since Jan-so it was really nice to see them. Blake loved playing with the girls on his swing set.
My cousin Jackie does a United Way Campaign every year, and this year she asked me to be a speaker. I was not going to do it at first. I am not a big fan of public speaking. However, once i realized how much United Way has helped us, I couldnt say no. Son on Monday the 27tth I went to Enterprise Bank & Trust on the plaza and told Blake's story. I was a little nervous, but that faded quickly once I started telling his story. It felt really good. It really helped to have Blake and Christian there with me. I ended up going and talking at the NKC location on Friday. Im really glad Jackie asked me to do it.
This weekend was pretty fun-Sat we went to a car show at the College Church in Olathe. My brother-in-law has his own car reconditioning business and they had a booth at the show. Blake was able to play on a fire truck and police car. There were around 100 cars to look at. The hardest part was making Blake understand he couldnt touch the cars. lol He was pretty excited that they had a 'DOC' car. No Lightning McQueen though. lol We all had a lot of fun! Blake went to Nevada after the car show. Christian wanted to take him to her grandma's farm. He saw cows and went on a tractor ride. He always has so much fun with her! I feel so lucky to have her helping us out! Phil and I were able to have some time together. We celebrated Jon's bday Sat night by going out for mexican food. Mmm! It was SO good!
Ok, there is more to tell you all, but it will have to wait! Talk to you all soon!

Mon Sept 6, 2010

Hello my faithful readers! I want to start by saying that although I cannot reply to your comments on here-I love reading them all! You have been so supportive! I cannot even begin to tell you how much it means to me. Its been over a year now, since our world was turned upside down, and you have followed me through and have stayed there with me. I am still amazed by all the continued support. I am so touched at how many people love and care for my family. We are so blessed! Thank you for sticking with me-and continuing to pray and support us! You make this journey so much easier for me, especially knowing I’m not alone.

Now moving along, I must say that I am truly learning the meaning of ‘carpe diem’. With the help of my best friend, Christian, I am taking advantage of opportunities I normally pass up due to our crazy schedule and being plain exhausted from our daily activities. Lol I know sounds hard right? Well, before we went down to Houston, I was guilty of being ‘too busy’ for a lot of stuff. Since my return from Houston, we have actually managed to find fun things to do-almost daily. Lol Blake’s swing set has, of course, helped in a lot of ways. And don’t worry, I am still planning on having everyone over to play!! Just maybe not all at once. Lol I try to find time everyday to let Blake go outside and play on his swing set, pick up sticks for sword fights, and simply enjoy just sitting outside. I have even found my own fun stuff too! My newest hobby-Shrinky Dinks. Very very addictive. Lol I am trying to squeeze in more time for me. Thanks to Christian, Phil and I have even had some date nights! Woo hoo!! Lol Christian has also referred me to some families to do a little babysitting as well. I am truly enjoying my days! Finally we have a little normality back in our lives! Thank you GOD!!

We totally had a blast this weekend! Saturday we enjoyed a family day-coffee in Westport, while meeting a really generous girl, Mimi. She is such an kind-hearted and amazing person. (I will explain more about this in a minute) Then Phil and I took Blake to the Legends. Blake has finally grown into his brace and can wear the same size shoe on both feet. Lol Funny the things that make such a difference-lol. So he can finally wear converse again!!! YIPEEE!! I know I am silly, but they are my favorite shoes on him! We also went to Cabella’s and Blake LOVED all the animals. He has hit a really fun age. He walked around with us and looked at everything with such awe. Its really cool to watch him discover the world around him. Totally inspiring. We finished our night off with dinner at IHOP. Blake cracks me up-anywhere we go now he has to order his own food, and its so cute watching him. He ordered chocolate milk and chicken “nugnuts” (nuggets) hahaha. Cant help but laugh! Then on Sunday we started the day off at Nathan and Andrew’s 8th Birthday party with Christian. Blake had so much fun. It was so great to see some of the girls we used to work with, plus Pam and Terri!! It was a great party!

After the party we headed to Irish Fest. We ran into a few people we know and that’s always such a pleasant surprise. I also ran into one of the little boys who used to be in my preschool class. Its always so great to see ‘my kids’ once they are no longer in my class. I miss having a class. Lets see what else, oh Blake played in the fountains, fully dressed. He seriously looked so happy! We walked around and enjoyed the beautiful weather-a little windy-but oh so nice. Then headed home for a much needed nap. Today we had a very lazy day-Blake woke up with a cold, so we just laid around all day long. Perfect end to our weekend!

We have a busy month coming up. There are actually going to be several benefits going on in October! We are very excited and feel very blessed to have such amazing supporters. Okay so just in case you would like to attend them, here are the dates. I am sure I will be posting more info soon!!

October 16 & 17-Junk 4 Jackson: Garage Sale

Denise DeBrine is an amazing mom who lost her son to cancer last November. She has morphed this very tragic event into inspiration for helping other sick children and their families. This is her 4th annual garage sale and she has chosen Blake to be the honorary recipient of the funds raised at the garage sale.

October 17- Dinner/Pool Tournament/Auction in Nevada, MO

Larry and Jeanie (Christian’s dad & stepmom) are working with Christian and Catch me Running to host a benefit for us consisting of dinner, a pool tournament, and auction.

October 31- 2nd Annual All Hallow’s Eve
Catch Me Running is hosting its 2nd Annual Children’s Halloween Party. This is a great benefit that is SO much fun! The party includes: face painting, tattoo booth, fortune telling, games, a scare-dresser, pumpkin painting, and SO much more! The whole family will have a blast!
As if things couldn’t get any better for us-lol!! Christian has asked if we would like to join her in taking a family vacation in January. We have NEVER been on a vacation, so after talking it over we all decided we should totally do it. Again, Carpe Diem!! Lol Christian has invited us to go to Florida with her in January, she has family who live there. After we decided to go-we all started talking about Disney-of course. How can you go to Florida with a 3 year old and not think of Disney. So we started doing a little research and realized just how expensive it is. We talked about the upcoming fundraisers/benefits and how we could set aside some money to help us make the ‘Disney’ part possible. Then on Saturday, we met with Mimi, who wants to help us make sure it happens. Her dad gives her money each year to help a child with a brain tumor. She picked Blake to help this year. We are so excited! I am hoping to get to know her better, she seems like an amazing teenager. She too, had a brain tumor. How cool is that?! So thanks to Christian-and some help from a stranger, we are taking a trip to Florida including a day or two at Disney! This is going to be our very first family vacation!! I am SO excited I can hardly wait. Its been a life time dream of mine to go! Blake will be 3 ½ by then and what an amazing adventure he will have! I cant think of a better way to start off the New Year!! I am praying 2011 will bring a healthier Blake, with a stable tumor-or better yet make it a miraculous year and have his tumor disappear! Wouldn’t that just be the best!
I am so overcome with gratitude. We have so many amazing people behind us. And now our connections are growing. We have new people who don’t even know us, wanting to help! Its been so moving! I am hoping I can pay it forward in some way or another. Life is pretty darn good right now!
…Coming up-MRI in November.

Thur Sept 2, 2010

Hi everyone! We have been pretty busy lately. Rehab is going really well. Blake is doing such a good job. He has made some improvements in leg strength. He has been riding his tricycle at therapy, and finally has been trying to push the petals. lol Such a simple thing-but I am SO proud. He is also working on turning his had over all by himself. I was able to sit and watch one of his sessions, and let me tell you I take a lot of movement for granted. He has to totally concentrate to do it. But watching him try, its SO inspiring. He is working so hard. Im such a proud mama! Its amazing that after a year of therapy he isnt burned out. He just keeps working harder and harder. And making more and more improvements. Blake is also talking A LOT more. He is putting sentences and questions together, its been so amazing watching him come along. I look forward to many more little moments that mean so much!!
Blake is totally enjoying his swingset. He would live out there if i let him. He has been very disappointed lately with all the rain. lol We are looking forward to some sunshine and dry grounds. I too, have enjoyed the swingset. Its brought a lot of joy to our whole family. Sitting outside having cookouts, watching the kids play on the swingset, enjoying the summer weather. Cant wait for fall! Falling leaves, hoodies, and all the fall colors. I will def. be taking some fall pics!
Thanks for all your support! Blake is doing SO well!!

Tue Aug 24, 2010

I am praising god!! Blake had his MRI today and it showed his tumor is STABLE!!! It shrank a lil bit more-not much-but I am SO grateful!! It was a LONG day. We started off having 9:15 check-in, 10:15 MRI, and 1:30 follow-up with Dr. Mahajan. However, they didnt put on our schedule that we needed to go to the Pedi-clinic and get Blakes port accessed. Ugh, so we ran across the hospital. We had to wait for almost 45 min, then after we finally got his port accessed-ran back to the other end of the hospital. Blake had his MRI, then we went to see Dr. Vatts, who after waiting another 45 min learned that he had an emergency. So we headed to our apt with Dr. Mahajan. She let us know his MRI results-we were very happy. Then went back to see Dr. Vatts. Waited another hour or so. Finally we went back, and he looked Blake over, read us the MRI results and then were sent back to the waiting room. Blake still had to get his port de-accessed. Ugh!! More waiting. We finally were taken back and were finally ready to head back to Jean's. We were all exhausted. We have to leave here tomorrow at 5am. This has been a suicide trip. Next time, I am going to plan on adding in a few more days. We werent able to see a few family members. :( We will be back in February, so I am going to make sure we see everyone then. Its been hard to do anything other than our apts this trip. Phil was able to eat his fish tacos last night. His birthday is tomorrow-we get to drive home for his bday. lol. Woo Hoo. haha. Oh and we were able to get Blake's 'Flashes of Hope' pictures while we were at the Pedi-clinic. I am SO excited!! I will post some up-again if you have a facebook-I have WAY more photos posted there. Carepages only allows me to post 100 pics. So look me up if you have a facebook. Talk to you all soon!! THank you for all your prayers! We are so blessed!!

Sat Aug 21, 2010

Hi everyone! Guess who just had their wish granted! lol Blake has had quite the day! I know you are all dying to see photos-they are coming!! So here are all the details:

Getting picked up in a limo-he loved his "big car"

Friday, at 430pm Joan and Nikki our Make-A-Wish coordinators came by to wait with us for our ride! A HUGE Cadillac Escalade Limo pulls up-talk about cool!! Blake wasnt sure what was going on at first-but let me just say he thinks we have a 'BIG' car to ride in now. lol He LOVED it once we were inside. No carseat, no seat belts-he was living it up! The limo took us to the Sheraton-OP Convention Center. We were put up in a really nice suite-3 rooms. A master, living room, and another bedroom with 2 more beds. Whats funny is we all slept in the Master. :) We went down and had dinner at the hotel restaurant-I think its called 1906. Phil got all you can eat shrimp, I got the fillet, and Blake got a hamburger with apples-not fries, he is such a healthy eater! lol For dessert we got a brownie duo and banana pudding. It was all VERY delicious. Then we checked out the swimming pool. We had planned on going upstairs, changing then going to swim. However, once we made it up to our room, Blake was looking a little tired, and Phil and I were feeling tired. Sooo Blake picked out a movie off the tv-The Chipmunk Squeakquel, and we all climed into bed and just relaxed. It was so nice!

Breakfast in bed

Saturday, we woke up early, had breakfast in bed. Breakfast included Belgium waffles, buttermilk pancakes, omlet, yogurt parfait, chocolate milk, sausage, toast, and some really cute little syrup bottles. lol It was so good. We all got dressed, then met our limo driver at 10am. We headed home, and there was so much antisipation leading up to our arrival. lol I havent been that excited in a long time! Such a great experience. So we arrive home and everyone is waiting for us. Blake got out of the limo, he was being really shy due to all the people. lol So my mom scooped him up and showed him the backyard. He went running up to the play system. So so so cool! His play set includes swing, see saw, slide, latter, ramp, rock wall, rope swing, chalk board, binoculars, steering wheel, sandbox, and a trapeze swing. I cannot believe they had that built in less than 24 hours-with all the rain we had Friday night-its amazing. We had a big cook out after the reveal. It was such a fun day. I am so glad we had so many people to share this special day with. Its a day I know I will never forget! Blake is such a lucky lil boy-and loved by SO many. We are truly blessed! Ok, so now I will try to get some pic posted. lol Talk to you all soon!!

The BIG reveal-his new swing set!!

Our amazing coordinators-Joan and Niki

Blake's yummy ice cream cake

Wed Aug 18, 2010

Hello everyone! I am sorry I havent written an update in so long. Geez! Things have been really good. Blake has returned to Rehab. He acutally is doing really well! He hadnt regressed as much as I though. So thats really great! Blake is getting a electro-shock machine to stimulate his muscles. On Friday the therapist are going to show me how to use it. I am pretty excited to be trying something new. He calls it the 'tickle machine'. I am hoping it will help his brain register with his arm a little better. Then in November Blake will get his 3rd session of Botox. Followed by some intensive therapy. Right now we are going to Rehab 3 times a week from 9-2. He is enjoying his sessions and he loves his therapists!
This is actually a really busy week for us. Saturday at 10am, Make-A-Wish is going to be revealing Blake's wish! So anyone who would like to come out-please do! They are picking us up Friday night around 5 and taking us overnight somewhere, then bringing us home at 10am on Sat. We dont know where they are going to take us-lol. Its hard for me to not know details...but fun and exciting at the same time! I can hardly wait for Saturday to be here.
Then on Sunday morning we leave for Houston, TX. Blake has an apt on Monday with opthamology, then MRI and follow up visit on Tues. We hopefully will be returning on Wed. The plan right now is to fly Angel Flight. However, they were having a hard time finding a pilot to fly all 3 of us. So we are keeping our fingers crossed. Worst case we will have to drive. lol I am praying that the MRI will show his tumor being stable. I know how unpredictable they can be, so I keep praying for Blakes to be stable. I am looking forward to spending time with my Houston Family. Blake has been talking about them, so I know he will be excited to see them as well. And if we get to fly-he is going to be so excited. It will be his first time flying. I just think that would make this one of the best weekends in his life so far: a playground and a ride in an airplane. lol Talk about exciteing! Such a lucky kid!
I know how you all have been praying for us, and I want to ask a favor of you. While we were in Houston, we made several friends. Its was like we became a family. Unfortunetly, one of the little boys we met went to heaven this morning. You can read his story at Declansjourney.com. I would really appreciate it if you could all keep his family in your prayers. I cant imagine losing Blake, and it breaks my heart knowing that Declan didnt make it. He was such a strong little boy, and had the best smile. I would really appreciate it! Declan's Journey

Sun Aug 1, 2010

Sorry it took me so long to post a new update. Things are going much better! We were in the hospital until Friday evening. They put Blake on a steroid, to help with what we are hoping is just swelling from the radiation. So far-its working. Blake is walking and playing like normal. Thank God!! We are still waiting to hear back from his doctors at MD Anderson. This is one of the down sides to out of state doctors...a lot harder to get a hold of. Now we are trying to find a neuro-oncologist, and its a lot harder than I thought. Kansas city doesnt have any that I have found, so far. Since seeing the amazing difference while in Houston, I am very motivated. lol
This weekend has been pretty nice. Christian took Blake to Nevada, MO Saturday afternoon. To visit her family and to give me some time to get stuff done around the house. Blake is of course having a blast!! I cleaned out the basement and garage. I have 2 HUGE bags im giving to good will, and another 3 HUGE bags to give a friend of mine. Plus a huge bag of trash. I am 'paying it forward', I have been given a lot of clothes and toys for Blake through out his life, and now instead of trying to sell them, I am giving them away to help someone else out. Its kind of my new moto. Pay It Forward. Helping someone feels SO good. I feel so forunate and have had SO many people help us and Blake, I am so happy to be helping a couple friends out. Its amazing how good helping people out can make you feel. :)
Well, I guess thats all for now. I am going to enjoy my much needed kid free time. I almost forgot how good it can feel to be kid-free. Of course I miss him, but its a nice break. Talk to you all soon. Thank you again for all your support!

Thur July 29, 2010

Blake and Mason playing with cars

Well, four days into being home, we are up at Childrens Mercy-Inpatient.
:( Wed night after dinner, Blake was walking and fell a few times. I was hoping it was just him being tired, with a weak leg and from not wearing his brace after bath. Then this morning he fell a few more times, took a nap, and for the rest of the day he wouldnt walk. He crawled around, played and watched movies. He tried walking a few times, but within a few minutes his legs were giving out on him. I called our Neurologist here in Kansas City. He recommended we go downtown to the ER. So at 5pm we headed to the ER. Finally at 730 we were taken back to a room. Then at 9 Christian showed up to relieve Phil so he could go to work. Dont know what I would do without her. By 10:15 Blake had an Xray, labs were drawn at 11:30, and then finally at 12:15 he had his CT. The Xray and Labs came back normal, so they ordered the CT. The CT came back with some abnormalities. We wont really know anything until tomorrow morning when they do an MRI. Blake has been a trooper once again through all of this. We didnt get a room until around 3:30am. Blake is still awake-watching his favorite show 'Backyardigains'. This kid LOVES Backyardigains. So here I sit in Childrens Mercy, praying that this is just some fluke side affect of the Proton Therapy that will go away in the morning, or something not serious. I am again, looking forward to going home. Thanks for keeping us in your prayers! Blake is one very loved little boy! Thank you soo much!!

Wed July 28, 2010

Hello to all my faithful readers and supporters! I am glad to say that we are home, and enjoying a relaxing week! We had a long drive Sat, the last 2 hours it rained SO hard. We were home by 11:30pm! It was so great to be home. Blake has been really enjoying all his toys he hasnt seen in 2 months. Its like Christmas all over again. lol We went to the pool with Christian, my mom, Katie, and Mason yesterday. I was so excited to get some much needed sun. However, I didnt realize how much I was getting until it was too late. I am so burnt. Its painful, lol. I was supposed to take Blake to the pool again tomorrow, but we had to cancel. His little arms are a little red too! I applied spf 50 before we left the house, and again at the pool, somehow he still got red. We have been having such a great week. It feels so good to not have any apts scheduled-no hospital visits. We have an apt on Friday with Dr. Le Pichon, I want him to give us some advice, and look over the scans from MD Anderson. I am also very excited for Saturday. Christian is going to take Blake to a birthday party then to Nevada for a few days. Soo I have a date night with Phil Saturday!! Woo Hoo!! I think we are going to go have a 'nice' dinner and maybe go see a movie. Then I will have a few days to clean house, organize, get things sorted. There are a lot of things I am getting rid of-we just need the space! It will be good to have a few days to do whatever I want to do-kid free! Blake will have a BLAST with Christian too! She has some fun stuff planned for him. I am totally missing my family in Houston, but just checked the schedule on MD Anderson's website and Blake is due back on August 24. So looks like we will be back in just a few weeks. I think we will leave on Monday and come home Wed. Phil's birthday is the 25th. So he says if he goes he wants to eat dinner at Adobe cafe in Houston. lol I think that sounds great!
We will start back at Rehab Institute on August 10th. I am very excited to see all Blake's therapists. He has been missing them. He seems pretty excited to go back! I am looking forward to getting him back into the intensive therapy. He really needs it We just spent almost 4 months without therapy. I can totally see a difference. It will be really good to be back! There are so many people we want to see now that we are home, I guess it will all be a matter of time. Make-A-Wish is scheduled to come out on August 21. I dont know any details yet, but Joan or Nikki I am sure will call us soon with all the details. I can hardly wait! Our backyard has already been bulldozed, there is a huge area of dirt. They said they would come soon to lay the sod down. Its gotta be put down before they do the playset since it has to be watered and not walked on for a while. So I guess thats really all for now. I cant believe how good it feels to be home-minus the sun burn lol. I will talk to you all soon!

Thur July 22, 2010

Well, this has just been a week of good news! The Angel Flight pilot called me yesterday to confirm Phil's flight out of Lees Summit. I asked if they had found a 2nd pilot. He didnt know-he was getting ready to call them. He goes on to say, "well, if they dont have another pilot, I will fly him the whole way." I was so happy! He then went on and even offered to stay overnight in Houston, and fly all of us home Sat. Amazing!!! Truly amazing!! A stranger willing to help us out like that! Wow!! I feel so blessed! I let him know that I had to drive our car home-but thank you so much for the offer. What a nice guy! So Phil will be here tomorrow afternoon, Im guessing around 1230 or 1pm. How exciting!! I cant wait. I cant believe our trip in Houston is over for now. Is doesnt seem real. We have really enjoyed our stay here. Now a whole new adventure home. :) Hopefully life will slow down a little without all the doctors apts and chemo out of the way. I am looking forward to it!
Oh, and Make-A-Wish called and they are looking at coming and doing our backyard playset Aug 7...I can hardly wait! What an amazing week of good news we have had! I pray all the good news continues! I def. could get used to receiving good news after all the bumps we have gone through! :) Ok-so this is my last post before we go home...I just couldnt help but share my good news! lol Thanks for all your support and prayers!

Wed July 21, 2010

Getting his vitals checked

Ok-everyone ready for some exciting-amazing-incredible news-Blake's had his MRI yesterday. The results showed that the Proton Therapy has already shrunk his tumor quite a bit!! OMG!! Can you believe it? I got goose bumps and was all choked up. The doctor said most likely it wont shrink anymore, so we are now hoping it stays stable! Im so happy-this really has been such an answer to all of our prayers!

Our last apt with Dr. Mahajan and Mary Ann-her nurse

Graduation-Blake got to graduate with his buddy Noah it was
a really special day!

Ok so now for a recap of our week so far:

Monday was Blake's LAST Proton treatment. They had a graduation for him. Graduation included Blake getting to hit the gong, the staff gave him some really cool presents and a baloon bouquet, it was such a happy moment. We brought juice and Toy Story cupcakes to share with everyone. All of our family here in Texas was able to come. It was such a happy day! Blake was able to graduate with his buddy Noah. We have become very close to their family. We are really going to miss all of our new friends. The amazing Proton staff-Blake couldnt of gotten through this with out them. I hope we are able to stay in touch with everyone. I plan on visiting when we come back for our MRI in one month.

Tuesday we had to be at MD Anderson at 730 for labs, then MRI, follow up with Dr. Vatts, then Audiology follow up. I woke up on Monday not feeling well, and Tues it was way worse. :( After getting the good news at his follow up apt-I did feel a little better. lol All his results Tues were good-his hearing is still great, and the MRI was of course AMAZING results. It was a looong day, however it was totally worth it finding out all the great news. We also had to pick up all his medical records and images from the records dept. Luckily it only cost me $23. Woo Hoo! So over all it was such a great day. I was able to come home and get a nap, and was feeling a little better.

Today-we are packing, doing laundry, and cleaning. We find out tonight if we have a flight for Phil. I am hoping we do, if not I have had a couple people offer tickets to us-to fly Phil down. However, I think I am going to save those for when Blake and I have to come back down in a month. Im thinking about driving home Friday-if Phil doesnt get the flight. I cant wait to get home and see my hubby and all my family and friends. Its gonna be so great catching up with everyone! And Make-A-Wish will be building Blakes palyset soon too!! Its gonna be SO great coming home and getting back into our routine. I am so thankful for this whole experience, and all the great people Ive gotten to meet and get to know. I will miss everyone, and hope to keep in touch with them all! Thank you all for all your prayers and support, Blake is doing well-he is a happy kid who you would never guess has gone through all he has. He is such a fighter! Hopefully my next post will be from my house back in Missouri! Talk to you all soon!





Sedating himself



Last treatment...

Mon July 12, 2010

Hi all my faithful readers! So we are 5 treatments away from being done with proton therapy. Blake is still doing really well. His head is red where they do the proton treatment. I went ahead and shaved his head with NO guard so that it wouldn't be so obvious where he is bald. I see a lot of Phil in him now that his head is shaved. lol. He looks pretty cute. This past weekend he ran a fever of 101.7 and 100. Im still not sure why, but his doctor didnt seem to be too concerned. He didnt have an appetite either, thank goodness for pediasure. He loves them, and if he wont drink them I can push them through his g-tube. Thank god we have that to use if he isnt eating and drinking. Everything else is going well. He has his audiology follow up tomorrow morning and and MRI next Tues. Then we are done with apts until we come back in a month. I am excited for his 'gradutation' from Proton therapy. Blake's friend Noah graduates the same day. Its going to be such a great day, and a sad day. The nurses and doctors make it a big deal-balloon bouquet and a present, he gets to keep his mask and one of the plates they use for the proton machine. Its really cool. Im super excited for him to graduate! Then we will have a few days to clean, pack, and get ready for our 12 hour drive home. I got a call today from a Christian organization I emailed last week, they might have a flight to get Phil down here. I am keeping my fingers crossed. It would be so great to have him ride home with me and Blake. I am really going to miss everyone here. I have made so many new friends and gotten to know a whole new side of family. I cant wait to come back and catch up with everyon. I am looking forward to going home, I cant wait to get back into our routine. I have a lot to do when I get home lol. Well, time for bed. See you all soon! Thanks for all the support-you guys rock!!

Wed July 7, 2010






Goodbye faux hawk



Walking on the beach with Jackie

Hi everyone! So we have been pretty busy. Jackie came into town June 30th-we had a lot of fun. She was able to go to 2 Proton apts with us. We went to the Galleria Mall, unfortunetly we didnt get through it all. It is HUGE! Silly me, I gave Blake Miralax the day before and lets just say it worked. 5 diapers later-we had to go home. lol. Eww! It rained Thurs, Fri & Sat. So we had to limit our outdoor activities. We did a lot of retail therapy! :) It was nice. Sunday we went to Galveston early and collected sea shells. Then we went to a pool party, and finally to watch fireworks. We had a lot of fun! Blake had a great day-and it was sunny all day! Monday, we took Jackie to the airport. Her flight left at 9-so we had to have her there by 8. My Aunt Jean came with Blake and me to his Proton apt. Blake loves showing people how brave he is. Our weeks are finally pretty consistant. Monday's we have our weekly see with Dr. Mahajan, and then Fridays we have our weekly see with Dr. Wolff. So its nice that the rest of the week we only have Proton therapy. I am totally loving not having multiple apts everyday. Blake does miss riding the bus/shuttle though. lol. Blake is really starting to talk a lot. Its so amazing to me the things he comes up with. My favorite so far-we were walking through wal-mart getting some groceries, and out of nowhere he asks "you know what?" I said "what?" He looks at me and says "I lobe you mom"-lobe-lol not love. How sweet is that? It made my day. He has also been saying "do what?" lol that cracks me up. When Jackie was here, we were at the pool and Jackie got in to swim with him-he looked at her swimsuit and smiled and said "I see boobs"-I couldnt believe it. He is so funny these days. His laugh is hilarious too-total revenge of the nerds laugh. lol. He is getting so big-I know you are all gonna be so shocked when you see him.

My little bald baby-still looking cool

When Jackie got in on Wed night, Phil sent the hair buzzers with her-so I shaved his whole head. Goodbye mohawk. I think he still looks SO cute, different, but cute. I am still getting used to the no hair-he has ALWAYS had hair. I love it though! I will post pics after I finish this post. We have 8 proton treatments left, and 16 days left until we will be headed home! I have mixed emotions. I am super excited to go home, but I am really gonna miss my Aunt and family here. I have really gotten close to them. I am for sure going to keep in touch. Blake loves all of them SO much! Its gonna be a big adjustment for him, we have a whole different routine here. Going back to a new one will be an adjustment for sure. Well, I guess thats all for now. As always thanks for all your support and prayers! I will talk to you soon! <3

Tue June 29, 2010

Well, its been an interesting week already. On Sunday, I took Blake to see Toy Story 3-in 3D. Blake didnt care for the glasses. He seemed to love the movie though! My cousin Jamie had her son Trey bring over a family photo she took of us on the beach, it is such a great photo. I am so excited to hang it in our house. She blew it up-not sure on diminsions yet. But I am so excited to have it! Then we all went to Quiznos for dinner. Sunday evening the Proton Center called us to let us know the Proton machine was broken. :( No Proton therapy on Monday. We still had his neuro-opthamalogy apt-and his weekly see with Dr. Mahajan. We are no longer done July 16, at first I was really bummed out. Our new last day is July 19-soo we are going to go ahead and schedule his MRI for that week. We are planning on coming home the 24th. I figure just in case the Proton machine breaks down again we have a few days to spare now. It hard relying on a unpredictable machine...ya just never know when its gonna break down. All the staff is great though. They take really good care of Blake. Today, oh boy-our day started off with me realizing my keys were in my aunts car from dinner last night. She was already at work...so she came home and dropped my keys off-then we speed off to proton therapy arriving just in time! lol I felt like such an idiot. She is soo good to me! I would be lost without her!! So thankful for her!

Slowly loosing his hair

Blake's hair is slowly falling out in the area he is receiving proton therapy. Which seems to be right in the front above his scar-so Wed night I am going to buzz his hair all off. Goodbye mohawk. This will be the 1st time he wont have a mohawk-he was born with a full head of hair and as soon as it was long enough-he had his mohawk. I know that it seems kinda sad, im just taking it as a sign that the proton therapy is doing its job! He didnt lose any hair during chemo-and then we found out the chemo wasnt working. I have pictures posted on my facebook-if you have fb-look me up: Mandy Blake-Danforth. I am on fb almost everyday. lol My cousin Jackie is coming down to stay a few days with us. She will be here tomorrow night. We have some fun stuff planned. It will be nice to have some help at our apts. I will be sure to let you all know what we end up doing. Thanks for keeping up with us! Talk to you soon!!

Sat June 26, 2010

Hi everyone! Sorry its been so long since my last post, this week was a long one. Here is my recap:
Mon-Our first apt was a Neuro-psych evaluation. Blake was so hungry he couldnt focus, so I asked for our apt to be rescheduled for a later time that week. We then went over to Proton therapy and Blake was so brave. There was a few faces I didnt recognize in the Proton room. This tall guy was the one who was trying to access Blake's port. He poked him 3 times before another nurse came over to do it right. I was so mad-Blake was SO brave-he watched the guy keep poking him with this big needle. I thought he would cry but he just watched. You could tell it hurt a little but he didnt cry. I was so proud of him. I could have killed that guy though. lol Oh and then that night when we got home his little port access tube-wasnt taped up good. He was playing on the floor and all of a sudden he is holding this little tube saying "here mom, help please" I thought it was one of Jeans parts or something. So I told him to put it back and he kept saying help mama. Then it hit me what it was-oh crap! Luckily his line was closed by the little clip-other wise he could have bleed out. I quickly put his tube connector back on-and made sure to make them tape it up so that wouldnt happen again. So scary! Then the poor kid came home and fell into the stone step and got a goose egg on his forehead. lol Poor kid had one heck of a Monday!
Tues-Oh Tuesday-what a day. This was my dreaded long day. It actually started off pretty smooth. We had a 730am labs, 800 EEG, then 930 Proton therapy, then 1200 Dr Slopis, then 2pm PT, 3pm OT. The first 3 apts went so smoothly. We arrived at the Proton Center-free parking, rode the shuttle over for the labs and EEG at the main campus, then caught the shuttle back over to the PTC (Proton Therapy Center). Once Blake was done with Proton therapy we caught the shuttle again back to the main campus, and this is when everything fell apart. lol So Dr. Slopis's nurse called and told me to come over right after Proton and they could see Blake early. So at 1130 we were in the waitin room. We waited till 1230 when the nurse let us know he had left the office and would be back at 1. Okay I thought another 30 min wont be too bad. At 130 I went up to ask the receptionist if he was just running late or what?! 10 min later they called us back to go to the exam room. One of his attendings came in and started the examination at 2pm. I was a little upset at this point-now we were missing PT. At 3 I thought she was done with us-well she was, but Dr. Slopis still wanted to talk with us. So we missed our OT apt too. We left his office at 430. I was SO exhausted and so was Blake. Dr. Slopis was very nice-but I feel like he should have rescheduled our apt rather than making us wait that long. He gave me some good info-and answered my questions. I just wish we wouldnt of had to wait so long, especially with how long our day was. By the time we got home we both were so tired-we ate dinner and crashed hard!
Wed-A nice recovery day for us-lol Only had Proton that day so we went out and did a little shopping. I found Blake a pair of white Etnies for $13.99. That is so cheap! I need to get him one more pair for when he grows. Normally Etnies ar $40, so they are a really good deal. lol.
Thurs-Proton, and saw Dr. Mahajan for our weekl apt. She said the redness on his head will soon be the area where his hair will fall out of. He is still doing really well with the radiation. So far it seems to be a lot easier on him than the chemo. He is full of energy and playing like a normal 3 year old! He is such a tough kid!
Friday-Started out with Proton therapy at 730-ugh! Then saw Dr. Wolff, who I found out is moving to Boston. I told him we were sad to hear it. We LOVE him!! Blake pretends to be Dr. Wolff. Then we had our Nuero-psych eval. Blake did a pretty good job, at the end our therapist had to bribe him with a surprise. lol He knows how to work the nurses now. lol He got a pretty cool tool set. We came home-napped, then that night we met up with Jamie and Pam and all went to the pool. Blake loved it! Jamie got in the big pool with him and was teaching him how to swim. The rest of us just sat pool side and hung out. lol We came home around 9 and hung out in the kitchen. After Blake went to bed we had a really fun girls night. Cranberry-Pomagranate Vodka drinks mmm!! lol It was such a nice evening. Perfect end to my week. I just love my family down here. I am really gonna miss them. I know that we will all stay in touch. Blake adores all of them. I think its SO cool that this experience has made me closer to a part of my family that I hardly knew when we first came down here. Now I fell like will be a part of our lives forever! So cool!
I also want to add that we made some really sweet friends at PTC. Blake loves playing with Noah and his little brother Isaac. He calls Isaac-baby Isaac. He is so gentle with him. lol Its very sweet to watch. Kristin is their mom and I have really enjoyed talking to her-she seems to have the same stresses as I do, and its nice to have someone to realate to. Especially when our hubbies are so far away-working. I hope to stay in touch with her as well. They are from Pennsylvania. I think it would be cool for Blake and Noah and Isaac to stay in touch too. Little pen pals-so when they get bigger they can look back and see what they experienced together at such a young age! Well, I think that about sums up my week. lol 3 more weeks to go and then we will be headed home to Lees Summit. I will talk to you all soon! Thank you all for the continued prayers and support! Love you all!!