Fri May 29, 2010

Well, a little change in plans. I am leaving on Sunday, just Blake and I. We decided Phil flying back wasnt really practical. It should be an easy drive since we have NO doctors apts that day lol. I plan on making several stops on the way. I cant believe how fast this week went by. I still have some packing to do, then we are off. 7 weeks...thats a long time! Luck for me I have amazing family support in Houston! I will keep you all updated on our adventures! I keep praying MDA will cure my lil man. He is such a fighter! So keep him in your prayers! Talk to you all soon!

Sun May 23, 2010

Looking out of the 7th floor at MD Anderson

Good evening my faithful readers! There is so much to fill you all in on! Let me start with last Monday: Blake had his MRI at MD Anderson. Tuesday we met with the Neurosurgeon who let us know that he agreed with Dr. Hornig-that surgery is not an option right now. He let us know that Blakes MRI results showed Blakes tumor had grown since our April MRI at Childrens Mercy. We had a feeling that would be the case. I am SO glad that I persued MD Anderson right away, rather than waiting until Blake was done with another round of chemo, which would have been another 2 months. So since his tumor has grown again, we know the chemo is NOT working. We learned from the neurosurgeon that our Oncologist, Dr. Wolff was suggesting radiation. We had no apts scheduled for Wed, so we decided to relax and catch up on some much needed sleep. Thursday Blake was supposed to get chemo, but we cancelled his apt since we knew the chemo wasnt working. The nurse told us if Dr. Wolff still wanted Blake to receive it we could just do it Friday at our apt. So Thursday we went to Kemah, Blake had a blast. It was a great day! Friday we had to be at the hospital by 7 for his lab work apt, so we had to be up by 430am. After the lab work we had our apt with Dr. Wolff. He let us know our options now that we knew the chemo wasnt working. We could try another chemo regimen or we could do radiation. He said his recommendation was to do the radiation. We met with our radiation doctor after our apt with Dr. Wolff. She recommended Blake receive Proton therapy. I had already done a ton of research on proton therapy, so we were already on board with it. Once we got all the info we needed we headed out-back to Kansas City. 13 hour drive...ugh! We made it home around 3:30am. I was so exhausted. Blake is such a trooper. He went the whole ride without crying or fussing. I was SO proud of him. So we are home, well for a week. I am very excited for Blake to get the proton therapy. I am SO sad that we are going to be gone for 7 weeks though. We have been looking so forward to June/July. We are going to be missing the Art Show, the Thomas Train ride, Blake's birthday, 4th of July, and Make-A-Wish building Blakes playground. I now that it will be worth it in the long run, but Ive been looking forward to all of this since early in the year. It just stinks! On a positive note spending the 4th of July in Texas will be pretty cool. And Blake gets to turn 3 in Texas! So I think overall its gonna be great. Everything happens for a reason right?! Best of all-I get to stay with my aunt Jean, who is just amazing! My whole family down there is just amazing! Blake adores all of them! So its gonna be really great to get closer to them, and build a relationship with my family! I feel pretty blessed! I figure Phil will fly down a few times, maybe Blake and me can fly up a couple times. We will make it work. Thank you for all your support! Blake is doing SO well! MD Anderson has a plan for us and I am just so thankful for everything! Talk to you all soon!

May 16, 2010

Our Houston family took us down to Galveston beach. This is Blake's first time seeing the ocean, well the Gulf, but close enough! He absolutely LOVED it! He loved playing in the sand-he was covered by the time we went to leave. Phil took him out into the ocean on his shoulders-it was so cute to watch! It was perfect weather, perfect company, and perfect day!!

Sat May 15, 2010

On our way down to Houston

Hey Y'all-we are in Houston Texas! We left Thursday afternoon around 3pm-right after Blake's Botox apt. We tried driving straight through-yeah right! lol 13 hours is a LONG drive. Phil got pulled over in Oklahoma and got a speeding ticket. UGH! The speed kept going up and down from 55-65-70 then back down then up. We were so bummed out. lol We just wanted to get to Texas, Phil had no idea he had done anything wrong. Oh well, right?! Cant do nothing about it except pay the dang ticket. lol So we finally made it to Texas in the middle of the night, but by 230am we were both SO exhausted. We ended up deciding to pull over at a gas station and both sleep for a few hours. I will tell you my little civic is not meant to be slept in. It was so uncomfortable. lol. Blake did so well the whole way down-he didnt cry once. He did do a little whining a few times-but he was SO SO good. We woke up around 430am to head into Houston. We wanted to make sure we had plenty of time to find the hospital and where to go for our apt. So glad we decided to go early!! When we got off the exit for the hospital I had no clue how big the medical center was-well centers is more like it. It is seriously miles and miles long-there are 50 if not more, medical buildings, the medical school is down there as well, they are even building more. lol It was like driving through down town Kansas City-only it was just the Medical/Hospital area. I will try to take some pics to post to show you all-it is CRAZY!! So we arrived to our apt 2 hours early-better early than late I always say lol.

Playing with cars in the playroom

They have a great playroom for the kids-with dollhouses, cars, animals, paint, crayons, i mean you name it they got it! Our actual doc apt was at 10am. We met with Dr. Sinnah, then Dr. Wolff came in. He is AMAZING!! He specializes in brain cancer and is the BEST!! I guess he has written books, he knows SO much!! We learned that one of the doctors who came up with the protocol regimen of chemo that Blake is on-is at MD Anderson. They call her Grandma. lol. So MD Anderson is the best place we could be!

Dr. Wolff says that there are lots more chemo regimens to try if this one doesnt work, he also is going to have the radiologist do a MRI scan on their machine and determine if he would be a canidate for radiology-which he believes Blake would be! He is also going to have their Neurosurgeon look at the MRI and just confirm that he agrees Surgery is not an option. Which he is pretty sure it still isnt! He has given us so much HOPE!! I know coming down here was the right decision. The plan so far is to see what the MRI shows. Since its been a month-if the MRI shows growth we will most likely change chemo regimens. We would return to KC and do all the treatment up there, returning to Houston every 3 months for MRI scans to be done. The other option might be radiation-but we wont really know if its an option until after Mon. I cannot tell you how great I feel about bringing Blake down here. It is seriously the best thing I think we could have done. Because its so early in the process for him they seem very optimistic! Makes me want to cry! Thank you all who encouraged me! i am so thankful we have family down here. My Aunt Jean is so great! I actually just met my cousins/her kids. lol Funny how im 28 and just now meeting some of my family. They are all SO amazing! I am really looking forward to spending time with all of them this week. I havent seen Aunt Jean or my Aunt Bonnie in so long! I feel so lucky to have them all here in Houston helping us along our journey! There are so many fun things to do down here-going to the gulf, there is some strip of stores and rides along the water-the zoo is down town in the medical district i guess, along with childrens museum-I just dont know what to do! lol We are totally playing each day by ear!

Blake passed out during his first apt to meet Dr. Wolff-
the long drive took a toll on all of us!

The food down here is delicious! We ate Mexican tonight and let me just say it put the Mexican we normally eat in KC to shame. Probably the best tacos ive ever had!! mmmm yum! Phil said we HAVE to eat seafood while we are here too, lol. I am normally not a fan of seafood-but we are out here on an adventure-so bring it on! lol. Blake is having a blast-of course! My Aunt Jean has the cutest long haired cat-Lala-omg she is a rollie pollie! So sweet! Has made my want for a long haired cat even stronger lol. Blake loves her! Oh she is so stinking cute-i will def take a pic of her too! I will post pics from our trip soon hopefully. well I better get to bed-Blake and Phil are already there-lol. Talk to you all soon! Thanks for all the prayers and support-you are the best support a girl could ask for! <3

Wed May 12, 2010

Hello! Hello! Make-A-Wish came by last night with VERY EXCITING news! Blake's wish is going to be a playset in our backyard. We are SO excited! He loves being outside, however we have NOTHING for him to play with in our backyard. Make-A-Wish is going to have landscapers come in to level an area out-if needed to put the playset. They think they are going to go through Rainbow Playsets. And they said its not gonna be the average playset. They are going to make it the envy of all the kids in the neighborhood! Slides and a fort, swings, we dont even know what all they are going to do! But they are going to customize it for Blake. He doenst have a clue whats about to happen, even though he was here when they told us. lol I seriously think its the BEST wish ever!! He will have so much fun playing that im know im gonna have to drag him inside at the end of the night to eat and go to bed. lol. I will keep you all updated on the progress. They said it will happen really soon!! Woo Hoo!! Playdate anyone?! Blake will be having lots of friends over im sure!! Its gonna be so great!!
Tomorrow we leave for Houston, right after Blake's botox apt. So im thinking around 230ish. Im hoping we get right in and out of our apt. Its gonna be a long day/drive. 13 hours to my aunts house, then our apt is Friday morning at 9am then 10am. We are gonna be exhausted! lol I am so lucky to have family down there to stay with. And thanks to a very generous friend we also have money to put towards gas!! :) We feel so lucky to have all the support we do. Its seriously amazing! St. Judes also contacted me finally and they too are looking into what they might have for Blake. So Ive got 2 major hospitals looking for options for Blake. We are praying that someone-anyone will have a plan. We are keeping the faith! Blake has proven the doctors wrong before-so I know that they dont always know what will happen! God is watching over him-and I keep praying for a miracle! I will let you all know how everything goes. Thanks for all the prayers and support! You are Blakes army of support!

Fri May 7, 2010

Today has been quite the day. We had Blake's speech evaluation for Great Beginnings at 9:15 this morning. He didnt make it through the whole thing, so we have to go back next week to finish. He woke up with a croup cough and super runny/stuffy nose. With Vincristing yesterday-he has been miserable all day. Poor guy! We were supposed to have his OT/PT apt at 12:00 but I cancelled it so he could sleep. He took a 2 1/2 hour nap. The rest of the day we just relaxed and played quietly.
At 4:55 Karen, our contact for MD Anderson, called and let me know that Blake's case was presented and they have scheduled an apt for him to be seen next Friday at 9am and 10am. Soo we are going to drive 12 hours straight through on Thurs to Houston, TX. Oh boy! We will go to our apts on Friday, and then drive straight back on Sat. Its gonna be an adventure Im sure. lol I didn't realize how expensive airfare has gotten. I havent flown since I was in high school. Geez its SO expensive. lol Lucky for us my Aunt Jean is gonna let us stay with her. So we dont have to worry about hotels and what not. I just love my family! I seriously feel so blessed to have all the support I have. Everyone please say a prayer that they have more options for Blake. I am living on hope and faith! I will keep you all updated on what they say!!

Tue May 4, 2010

What a great day!! The weather was beautiful. Nana and Mason came over to spend the day with us. We walked around down town Lees Summit, then went to the park and had lunch. We came back to the house and let the boys play in the baby pool in our backyard. Blake had so much fun. It was a good day!

The plan has been set into motion. I contacted our oncologist and they are getting everything together to send to MD Anderson. When we go in Thursday for chemo we will sign all the releases for the remaining info. So I'm hoping they will have everything they need by Friday and we can find out if they have any trials/treatments to offer Blake. I am keeping the faith that there is something out there for him. Thank you all for your prayers and support! <3