Wed March 31, 2010

Mic-key button! Woo hoo!!

Hello everyone!
So Monday we went to CM and Blake's had his g-tube replaced with the actual Mic-key button. They sedated him and the actual procedure only took 20 min. They had to gage the hole where the g-tube was since the mic-key button is a little bit bigger. Poor Blake! He was in pain on Monday.
He finally was able to have a REAL bath!! We let him play in the tub till he was all wrinkly. lol I know it had to feel SO good to just sit and soak. He slept really well Monday night!
Tuesday we went to Rehab-he worked really hard but he definitely was showing signs of discomfort. He is such a trooper. He ended up falling asleep during his last session-PT. Lol. I went over to Union Hill to visit while Blake was in Rehab. I miss all the kids SO much. They have all grown so much-its crazy. I was kind of sad when I left. I was watching all the kids working and playing, realizing that a lot of the kids that were in Blakes 2 year old class are now in preschool. Blake would have been in the preschool class now too. It made me sad. Plus watching all the kids work-using 2 hands, how easy they move around. Blake still cant really use his right hand/arm. He tries really hard but still struggles with a lot of daily activities. I know they are working on strengthening it at Rehab. It really makes me sad to see him struggle with it. I want SO bad for him to be able to use it-and do things independently. After seeing all the kids doing work I have decided to try and put some preschool work in his playroom and Im going to attempt to give him some Montessori lessons. Spooning, pouring, counting work, etc. I know he cant carry a tray by himself-but im gonna try to teach him how to compensate. Even if it means carrying each piece individually. He really misses school. I want him to have some of the preschool experiences. Now if I can just get my fabulous husband to make some shelving. lol
We are at Rehab today-Blake woke up in a great mood! He just went back to do PT-he also gets 30 min massages on Wed! Lucky kid! lol We found out yesterday that Blake gets to attend the Rehab Institute's Summer Camp!! He will stay at 3 days a week. They go on field trips on Wed's, and he will get to do fun crafts and activities. Im really excited for him to get to participate. It will be great for him socially too! I cant believe ita almost been a year since this whole thing started. He turns 3 in June-I cant believe it! He is gettin so big-time sure does fly! We are already planning his party! Im gonna do a circus theme-thanks to Union Hill letting me use the same decorations they used for their Ann. week! I have a feeling this is gonna be his best party yet! :)
I will talk to you all soon! Thanks for keeping us in your thoughts and prayers!

Sun March 28, 2010

What a FANTASTIC weekend! I must say this was such a fun weekend! Sat we had Phil's sister and girls come up for an overnight. We celebrated Katie turning 4. Blake helped me make a birthday cake for her. Confetti cake with pink icing. Of course Blake picked out pink frosting. Blake had such a blast playing with the girls. Its been a while since we have seen them so it was such a nice treat. He was sad when they left today. Once we had an empty house we all took a much needed nap. lol Later on Phil made homemade hot wings and potato wedges, ugh they were SO good. We also had one of Blake's favorite fruits-grapes. Mmm. I was SO full afterwards. It was nice to just sit on the couch and relax the rest of the evening. Now im hanging out with Christian and watching "New Moon". God we LOVE this whole series. lol I know we are big nerds-but the books were SO good. Im totally sad that there aren't more. Ahh-Blakes sleeping, hanging with my best friend, full tummy, what more could a girl want! lol
Tomorrow we have to be at CM bright and early-7am. Blake finally gets his Mi-key button for his g-tube put in. I seriously cannot wait. Blake hasn't had a bath in 2 months-well a real one anyways. He has been begging me 'Bath mama, pleeeaaase'. So im gonna let him stay in the tub till he is a prune. lol It gonna be so great not to have to worry about changing his dressing anymore. Blake hates it-so I will be so thankful when I dont have to make him cry anymore. Blake has been doing really well lately. He still has 'gremlin' days but we are learning to handle them better. Im looking forward to summer. I cant wait for the warm weather! Spending time outside! Im hoping Blake likes his babypool better this year. Last year he was not crazy about it-lol. So I guess we will have to wait and see. Ahh...so on with my relaxing night. Talk to you all soon!

Sun March 21, 2010

Hi everyone! Well up until today Blake hadnt shown any side effects of the oral chemo. He woke up and within 30 min was throwing up. He threw up every 10-15 min for the following 3 1/2 hours. We tried giving him his anti-nausea med but within 5 min he would throw it up. We called our hema/onco on call nurse and she said to try giving Benadryl along with the zofran. The first time we tried it he threw it up within 5 min. So we waited 30 min and tried again. He threw it up again, but this time he seemed to be feeling better. After an hour he hadn't thrown up-and he was able to eat a few crackers and drink a little water. He is such a trooper. Ive never seen a little kid throw up without crying. He just leaned forward-threw up-then leaned back and rested until the next time. I felt SO bad for him. He is such a good kid. Through everything he amazes me. We had a super lazy day yesterday-and since Blake isnt feeling well-we are having another lazy day. lol. Im hoping the next 2 doses of procarbazine wont cause him to throw up. We are almost done with the oral chemo. So by 1:45 tonight we will be finished, then in 2 week we will go to his apt for vincristine. Thank you for the prayers and thoughts! I will let you know tomorrow how the rest of the night went. <3

Wed March 17, 2010

Happy St. Patty's Day!! I wish I could say we had a great day...however, since yesterday afternoon Ive had a lil gremlin on my hands. Blake has thrown temper tantrum after temper tantrum. I wanted to cry on our way home from therapy today. He threw the biggest fit ive seen yet. Ugh, it was horrible. Today was not a good day, but tomorrow will be better. Especially since tomorrow night I get to go out for a much needed girls night. I am having dinner with 2 of my favorite girls. :) I hope tomorrows chemo apt goes well for Blake. We start our 3 day oral chemo-cycle 2. I will keep you all posted on how it goes.

Tue March 16, 2010

Hello everyone!! We had our apt with our Neurologist today. Dr. Le Pichon-we love his apts. He always gives us LOTS of information-he is seriously so great!! We found out that the Keppra(seizure medicine) is most likely what is causing his bad behavior. I guess its very common in Keppra. He said that slowly things should get better, and as soon as he is done with chemo we will go back on Trileptal. I am SO relieved to know whats causing the terrible temper tantrums that last for hours. I was hoping that it wasnt because my son was turning into a little gremlin. lol. He has good days and then out of the blue will wake up a gremlin-then after a nap or sometimes the next day-he is back to being my Blake. lol. Dr. Le Pichon said that once he is off the Keppra he will go back to being our 'normal behaved' son. So we only have to wait a year to get him back lol. Its funny how knowing the cause makes it easier for me to tolerate the 'bad' behavior.
Thursday we go back to Children's Mercy to get Blakes counts. If everything looks good-we start round 2 of his chemo cycle. 1 down-8 to go. So far the cycle is pretty tolerable. Blake still hasnt lost his hair-but that could change is what Ive been told. I am ready for it to happen, and of course now that Ive been ready its not happening. lol. I guess time will tell. The worst part so far has been the Vincristine. Since we have Gabapentin now-that seems to be making the pain more bearable. Thank God!! I hope he NEVER has to suffer for 4 days straight again. It was horrible. Im not sure how the oral chemo will make him feel, we gave it to him only a day after he had his central line and g-tube put in. So the side effects could have been masked by his recovery. I will let you all know how it goes. I dont believe that it was that bad-at least it didnt seem to be painful at all last time. We will see.
I am so excited about the Catch Me Running Art Show. I am trying to figure out a color palette for Blake to use for his canvas. Any ideas? He is really into painting right now so I figure thats what we would enter into the show. I cant wait to see all the childrens art work. I used to love to receive art work from my kids in my class. There is something magical about the way they view the world. Before they notice all the fine details-they draw 7 fingers on a hand-or a cat with 5 legs. lol. Its so great!! I miss all my kids SO much! Im really looking forward to the show!
I will talk to you all soon!! <3

Thur March 11, 2010

sleeping in the hallway lol

Hello everyone. So I wanted to let you all know that Blake is doing really well. So far we only had 1 bad chemo day-as far as pain goes. :) We were able to go to Rehab on Wed, and are planning on going tomorrow as well. Blake's spirits are high and he seems to be feeling good. Life is crazy busy like always. I have several projects going on right now-lol. We go in next week to start cycle 2 of Blake's chemo treatment. 7 more cycles to go. :/ Im still taking it day by day though. Next week we also meet with our neurologist. Im hoping to find out if the tumor could be causing some of his temper tantrums. We are also looking into his medications. I will let you all know what I find out. Other than the upcoming apts, life is pretty much the same. Rehab 3 days a week. I want to thank all of you again for all your support. An old friend of mine recently found me on facebook, and after reading our story she asked how I was able to get through all of this. It was such an easy answer-I told her I have an amazing group of people supporting us! I really cant say thank you enough-you have all done so much to help us get through this-and it keeps on coming. I cry tears of joy it seems more often than tears of sadness. I know our path wouldnt be as bright without all of you shining all your positive light on us. Thank you, thank you, thank you for always being there when I need you. Talk to you all soon! <3

Tue March 9, 2010

Hello everyone-I just received this on facebook. I wanted to share it with all of you as well. Joy is an amazing mom with a huge heart! I am so grateful for everything she is doing. Here are the details she posted:

Catch Me Running

A Children’s Art Show and Auction
Call For Entries

(You don't have to have a kid to participate!)

How could anyone with an eye, or just with eyes really, not want to see a child's fantastic first attempts at faces or little handprints of smeared paint? Or the watercolor worthy of a prominent place in somebody’s living room, and then there are those beautifully crooked clay pots made with no inhibition. A child’s creative side deserves more than a spot on the refrigerator.

Break out the washable paint ‘cause here’s that chance.

The Gallery at 19 Below will be hosting a very special exhibit and benefit during the month of June, that will feature the work of the children dearest to you. This group show will be part of the June 4th First Friday Openings, with a Private Viewing and Silent Auction Thursday, June 3rd.

That’s right; don’t get too attached to those masterpieces, unless you are willing to up the bid!

“Catch Me Running” A Children’s Art Show and Auction will donate 100% of its proceeds to a very important cause – a 2-year-old boy named Blake. Blake is currently receiving treatment for a brain tumor that was discovered last summer. Please help us help Blake get the absolute best treatment he can, and enable his parents to spend their energy helping little Blake fight this horrible disease rather than picking up extra shifts and overtime.

Submit the work of the children you adore, regardless of age. We are asking that you make a $10 hanging fee donation for each masterpiece you submit, or you may submit 3 pieces for a $25 donation. Please have the work ready to hang, meaning mounted/framed or however it’s intended to be viewed. We will begin accepting submissions immediately. Work can be dropped off or shipped to The Gallery at 19 Below, 5 W. 19th Street, Kansas City MO, 64108, and hanging fees paid through Wednesday June 2nd.

Please forward or post this information so all-little artists can participate!

You can read more about Blake and his families struggles and miracles through their Care Pages:
http://www.carepages.com/visit

From the link above, type in fightingforTUMORrow in the search.

A personal note:
I met Blake when he was in Aurora's class at Union Hill Day School. One morning, Roro's teacher told me that Blake was having surgery for a 5 cm brain tumor, I felt like someone punched me in the stomach. The thought of what his mommy, Miss Mandy, a teacher at UHDS, must be feeling brought me to tears. In addition to the unthinkable stress of keeping their son alive, Blake's parents are feeling the weight of finances crashing down on them. They applied for treatment at St. Jude’s, but were informed that Children's Mercy is already doing everything that would have been done at St. Jude’s. This is good news in that the family can stay in KC for treatment, however treatment with St. Jude’s would have been provided at no cost. Blake has also been accepted to the Make A Wish Foundation, I’m not sure what his wish is yet, but I bet it has something to do with Lightning McQueen or Tony Hawk!

I realize that this event is a few months from now and you have time to forget (though I'll remind you!), but you also have time to learn about Blake and his family. You have no idea how much you can help.

You can read up on the little rocker Blake and see plenty of cutie pie pictures at http://www.facebook.com/inbox/?ref=mb#/group.php?v=wall&gid=139746882707

Please consider making your heart a part of this show and a part of Blake’s life.

Sun March 7, 2010

Hello everyone! We have had a pretty great weekend!
Friday-We stayed home from Rehab, and Mason, my mom and Arlene came over for a play-date. Blake had SO much fun. The boys got to paint little ceramic cars, play with play-dough, and made bracelets. They played cars, and ran around the house just having so much fun.
Saturday-Megan and Kirsten came over and we all went shopping. Blake and Kirsten both wore masks. lol. Blake is really getting used to wearing the mask now. I love it because now we can actually run errands. Then Sat night I went to see Alice in Wonderland with the girls. It was great! I had so much fun!
Sunday-We all stayed in and relaxed. I wasnt feeling that well for most of the day. However, we had a girl come by and test drive my Xterra-and she is calling me back tomorrow after she talks to the insurance company about cutting her a check. Her car was totalled. Its funny because I posted my car a month ago-and had a few hits. After we figured out we didnt know where the title was-I deleted my post. Once I found the title I re-posted my Xterra. Within a few hours I had a ton of hits and calls on it. Over the weekend-I probably talked to 10 different people lol. I am so excited. Its gonna be so great to sell it and get something a lot more affordable. Im looking at Honda Civic's. They get great gas mileage. Im sad to see my Xterra go, it was the BEST suv! I love it! Its funny how attached Ive gotten to it. :)
So Blake had his Vincristine on Thursday-and he actually has had very little side effects this time. They did give him Gabapentin two days prior to getting the Vincristine. Im thinking that helped him. Today he did complain about his mouth hurting, so we gave him pain medicine. It seemed to help him out. I am hoping that this is as bad as its gonna get. I am also going to call our nurse on Monday because he has had an ongoing temper tantrum since Thursday. Im hoping its medicine related so we can fix it-lol. He had been quite the handful. Although, I know that there is a possibility that it is terrible twos and his age. But in all honesty this is SO out of character for Blake. Im talking major tantrum, out of nowhere lasting all day long. Its crazy. Megan was shocked because she hasn't ever seen Blake act out-lol. So im telling ya-its bad. I will keep you all posted!

Tue March 2, 2010

Today was a GREAT day!! We were able to go to Rehab this morning. I think everyone was so glad to see him back. Its been almost 2 weeks since we've gone to therapy. Blake worked really hard-like always. There was a fisher price little people doll house with a red card that read 'Blake'. I have no idea who gave it to us-its super cute though. All the card said was "You deserve a village" signed with 3 hearts. Its a mystery. None of the other moms know who its from either. It was a happy surprise. I just wish I knew who to thank. lol. Then it was off to CM to get Blakes new brace. Its blue with lime green and yellow spaceships and rockets and stars. There of course are some pink shooting stars too. He got a blue strap and a pink strap. The ankle is hinged-so he will be able to walk a little easier. He likes it-although I have to watch because when we got home his little pinky toe was red-so if it continues we will have to get it adjusted. While we were at CM we stopped by radiology to pick up more supplies to change Blake's g-tube dressings. Then we went down to Hanger to pay for part of his brace, then on to the pharmacy. They let me know CVS already had filled Blakes prescription. I was frustrated because we were supposed to get it last night and for some reason they only gave Phil one of the two medications. Our last stop was CVS-had to get the prescription. Then finally we were home. Blake played with his new doll house for over an hour. He sure does love doll houses right now. lol. Its so cute to listen to him talk-pretend with the people. He is so sweet! He always having his people kiss. lol. He is such a good kid. I am really so proud of him. That was our day-I am hoping the rest of our week follows todays lead-it was such a great day!! Oh and the weather was amazing too! Gotta love sunny days!