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Friday, April 30, 2010

Fri April 30, 2010

Hi everyone. We could really use your prayers and positive thinking:
I went and talked with our Neurologist, Dr Le Pichon yesterday to discuss the MRI results. He is really good at explaining things to us in terms we can understand. He showed me the scans, slide by slide, explaining his thoughts. He read Dr. Shores report to me and gave me a copy of the radiology report. Its all really scary, but nothing is definite yet. We are going to wait through the 2 full cycles of chemo (12 weeks) for his next MRI. Dr. Le Pichon said he agreed with Dr. Shore, that waiting would give us a clearer picture if his tumor is growing. I know I told you all that Dr. Shore said he "didnt have a plan" for us if Blakes tumor has in fact grown. Dr. Le Pichon explained what exactly Dr. Shore meant. He meant that this is the only known treatment for Blakes specific tumor. Dr. Shore is doing all that he can. He is contacting St. Judes again to touch base with them and figure out if there is any open protocols that Blake would qualify for now just in case his tumor is in fact growing. I also have sent an email to MD Anderson's Children's Cancer Hospital in Houston, TX. After my Aunt Jean told my dad about it, my dad told me, I asked our neurologist and he said we should definitly get their opinion. They are the #1 cancer center in America. Their website says that their oncologists treat more rare cancers in a single day than most physicians see in a lifetime. Sounds pretty good huh?! So im going after them for a 2nd opinion. Here are a few more facts about them: Leading-edge technologies and therapies not found at most hospitals, they have been eliminating pediatric cancer for more than 6 decades, pioneering therapies that are more effective and less invasice for their patients, and they have innovative therapies generally available several years before they become standards of care elsewhere. So pers olease pray that they will be able to have some new information for us reguarding Blake's tumor. I know we are still waiting to confirm whether or not his tumor is still growing but why not get as much info now?!
Here is what we need prayers for:
**Blakes tumor to shrink/stop growing/or to disappear all together
**For MD Anderson's Childrens Cancer Hospital to have more options for us if Blakes tumor is growing
**For Phil and I to have the strength to get through this hard time-we are doing as well as can be expected-we are trying to stay strong and positive with faith and hope that things will get better!
Thank you all for all your support and prayers-It means the world to us knowing you are all behind us!

Thursday, April 22, 2010

Thur April 22, 2010

Hello! So yesterday our social worker, Jodi, that works with our oncologist called me. She called to let me know that Dr. Shores policy is to wait until our appointment and discuss MRI results. This has been his policy for years. I guess since our RN is new, maybe she didnt know that. I let our social worker know that I was totally fine with waiting if thats Dr. Shores policy, but that I was frustrated because Paige kept telling me she was gonna have results everyday-then not giving me any. I am so glad all that was solved. I was really upset at the whole situation. Ugh it drives me crazy when communication gets messed up. Im just glad we know for next time!!
Today we met with our oncologist Dr. Shore to get Blake's results. I must say I that they might be confusing to some of you. I somehow understand them-even as frustrating as they are. lol Ok-so Blake's MRI looks like the tumor grew-BUT-it was taken at a different angle than last time. Its pretty impossible to get him in the exact same position every time. They warned us about this early on in our MRI's. So due to the angle-the scan they took could make the tumor appear bigger-but it could also be swelling or shadows as well. We really wont know until our next MRI. The scary part is that if the tumor DID grow-Dr. Shore doesnt have a plan for us-so we would have to look into going to another hospital. Maybe St. Judes or another 'cancer' hospital. Im looking at positive as long as I can. Its SO easy to fall into the negative side-and so far Ive stayed as far as I can from the bad. ;) So the good news is that the area where Dr. Hornig did the surgery-where the scar tissue is-looks smaller! Thats good! So now we get to do more waiting. Dr. Shore would like us to wait 2 more chemo cycles, however if Blake's balance/coordination doesnt improve we will be getting an MRI after one cycle. Blake has been falling down a lot again. :( This could be due to the Vincristine-it causes 'slap foot' where his feet slap the ground when he walks. Dr. Shore checked his reflexes today and they arent responing like they should which is a good sign that its the Vincristine and not the tumor causing his weakness. We are also going to go back to the opthamologist to get his vision checked again. Just to make sure he is seeing ok still.
So not really the news we were hoping for-but its not bad news either. We really need all your prayers and positive thoughts! I will keep you all updated!!

Tuesday, April 20, 2010

Tue April 20, 2010

Well, today we were supposed to get the results from Blake's MRI. I waited all morning-even though I wanted to call them 1st thing this morning. Finally at noon, I still hadnt heard from them, I called to find out the results. Paige, our RN with Dr. Shore, let me know she still didnt have all the results. She said she talked to Dr. Shore and they would have them all for us on Thursday. I was SO disappointed. Our apt isnt until 2pm on Thursday. That seems SO far away. I am so axious for the results. I dont understand why they are taking so long this time. She told me it doesnt mean anything, but how can you not think something bad-when I normally have the results at latest the next day. Ugh! We havent had an MRI since December. So I am really having a hard time being patient. After talking to some of the other Rehab moms, they agreed that she should have something-even if its not everything, so I called Paige back after we left rehab to ask her why they werent ready for us. She said she didnt have an answer and that the earliest we would know something would be Thurs. I am so mad. I am nervous as to why it is taking longer this time. I just pray its good news, even though my gut is telling me different. Im just gonna keep praying for good news. Bear with me everyone. Thanks for all your prayers and support. We need them!

Monday, April 19, 2010

Mon April 19, 2010


Going through the Rainforest
Hi my loyal readers! This past weekend was great!!
Friday we left for Omaha with my best friend Christian. On Sat we went to the Omaha Zoo. I love that zoo. Blake seemed to have a blast!
Make-A-Wish called me on Sat and set up our first meeting for Sunday at 6:30pm. So it was a good thing we left in the morning-we got home around 3ish. I had plenty of time to get the house picked up. Joan and Nikki are our Make-A-Wish volunteers. They both seem so sweet. They brought brought Blake a lego dump truck and a Cars coloring book. He loved them! They hung out with us for a little over an hour. Everything they have planned is gonna be a surprise. We wont know until they get everything approved through Make-A-Wish. I am super excited for Blake. He has no idea whats about to happen! We are meeting up with Joan later this week-there is some paper work we have to get for her.
Today was our 1st MRI since we started chemo. I was told we would get the results by this afternoon. However, they were very busy today so when I called our nurse she said we would have to wait until tomorrow. I am bummed. I have been waiting for these results since we started chemo. Our last MRI was back in December. Ive been praying for good results. Please say a prayer for us-im hoping for good news in the morning. I will let you all know once I get the results back!
Thank you for all your support! Talk to you soon!!
Heading home

Wednesday, April 14, 2010

Wed April 14, 2010

Hello all my fabulous readers! Im gonna try this again. lol I tried posting an update on Monday and something happened with my post and it was ALL erased. ugh! So round two here we go!
This past weekend was a BLAST! Saturday we went to Lowe's and bought wood to build Blake shelves for 'Montessori' work. I am super excited. I ordered him sandpaper letters and numbers. For those of you who are not familiar-they are small wooden boards with sandpaper letters/numbers. The child runs their fingers over the sandpaper and you teach them the sound of the letter. Im gonna teach him the same way I taught my class. Starting with s, m, a, t-once he knows all 4 sounds, we can do word building sam, sat, mat-and the more 'sounds' he knows the more word building and reading he can do. My goal is to get him reading by the time he is 4. :) I also went to the thrift store and bought some practical life work-mainly pouring and spooning. Im looking to build on materials. Im looking to make some of it, and others well, i will have to be creative. Montessori materials are SO expensive. I was really lucky to find the sandpaper letters for so cheap. :)
Watching the seal show
Blake LOVES the elephants! They are his favorite!
Saturday was my niece Kirsten's birthday, we all went to the zoo! This was Blake's first trip to the KC zoo. We had SO much fun! Blake was so interested in all the other kids. He waved and said hi to everyone that passed us. One of the cutest things he did that day was when we stopped at one of the animals-I think it was the lions, and we let Blake out of the stroller to get a better look. There was a little girl about his age standing next to him. He said hi, at first she was a little skeptical. Once she saw his tattoos whe was interested-so he of course starts showing off all 3of his tattoos. Turning his arm over and even puling righty over so she could see that one too. He was having SO much fun talking to her. He got really excited and came over to the stroller to get a drink. Well, when he went bak to talk to that little girl again, her family decided to go on to the next animal. I wish I would have had a video camera to record his reaction. It was SO stinkin cute. He walked over and realized she wasnt there-turned around and saw them walking away. His head dropped and he looked so bummed out. It was so sweet. Phil laughed and said "did you forget to get her number?" lol It was so funny! I learned a couple very valuable lessons when going to the zoo: 1. Do not wear flip flops 2. Take tan lines into consideration 3. Bring sunscreen, a small bottle at the zoo is $3 geez!! 4. Make sure Blake has his hat lol After only being in the park 5 min we had to buy Blake a hat and sunscreen because his got left at home. lol He would have fried otherwise. We has SO much fun!
This Friday, Blake and I are going with Christian to Omaha. I am excited to go to the Omaha zoo on Sat. I love that zoo! I know we are going to have a blast. I am in desperate need of a girls weekend! So Im super excited. I always have a good time with Christian! Plus Blake really listens to her and loves hanging out with her!
Monday is Blakes MRI-I cant wait! Im so ready for the results! Keep us in your prayers! Talk to you all soon!!
Thank you Buddha for the good luck!

Thursday, April 8, 2010

Thur April 8, 2010

Hi everyone! I am so excited to let you know that we FINALLY got our official acceptance letter for 'Make A Wish'. Basically this means that the next step is meeting with our coordinators. From what Ive understood-they will come meet Blake, hang out a while and learn about what he likes. Then they will decide what "wish" they think he would love. Since he really isnt old enough to tell us. lol. Who knows though! Im super excited for him!! I will keep you all posted on any further info!!! :)
We have Rehab tomorrow, Blake has been working hard. They decided that since next month-May 13-Blake gets Botox, that a break is in order. They decided to give us 4 weeks off, starting April 26-May 21. We will be back at Rehab on May 25. Its gonna be so nice to have a little break. When we go back they will be doing intensive therapy again for the botox. They said that since Blake has been improving this entire time-with no break-that they dont want him to get burnt out once the intensive therapy starts up again. Im so proud of him. We have been going to Rehab 3 days a week since July 14. Its been almost a year-and Blake is STILL showing signs of improvement. He has never given up! I have such an amazing kid! :)

Monday, April 5, 2010

Mon April 5, 2010




Decorating Easter Eggs

Hi everyone! I hope you all had a great Easter! We spent the day at my parents. Blake had a pretty good Easter. I dont think he was feeling that well-he slept through lunch, poor kid. When he woke up, the kids got their Easter baskets from Nana & Papa. Then they all looked for Easter eggs. I think all the action took it out of Blake. He took a nice nap when we got home. The chemo seems to take it out of him.
Ok so here's what we've been up to last week:
Thursday we went to CM for his 'Vincristine'. The Easter bunny came to visit him while we were there. Blake actually went up to him and gave him a hug-I thought he'd be scared-but nope he was talking to him and even took a picture with him. Im hoping we will get a copy when we go next week for his next dose of chemo.
They scheduled Blake's MRI finally!! April 19. I am so anxious for the results.

Blake's cool monster eggs

Blake has been doing really well lately. He still has all of his hair-it has changed texture and its not as shiny lol. I was so ready to shave his whole head, im glad I waited. lol.

This morning we had our first meeting at 'Great Beginnings'. Blake turns 3 in June and he will no longer be eligible for 'First Steps' so we are looking into what the school district has to offer. They just built a beautiful new school out by us. I just hope he qualifies. We barely qualified for First Steps, so now that Blake has made improvements Im nervous that they wont accept him. It kinda stinks. Blake is SO smart, and he can do a lot of things by himself, however he still cant use his right arm/hand. Which makes everyday normal stuff very hard/frustrating for him. He wouldnt be able to go to a normal Pre-K due to his disabilities, yet his disabilities might not be enough to get him into this special school. Its like we are in limbo. They have several tests that they need to do on Blake before we will find out if he is eligible or not. I just pray somehow thay find a way to get him in.
Robot easter basket full of candy=Very happy Blake


Chubby cheeks full of candy lol

We have a nice quiet week this week. Rehab on Tues, Wed, and Friday. That is about all we have planned. Im hoping we will have some nice evenings-weather wise. The school we went to visit today has an AMAZING playground-so I want to take Blake up there to play. Most of the parks around our house are muddy and for bigger kids. This one has the rubber mat/ground, and has a bunch of special equiptment. Im super excited to go play! Blake waws sad we didnt get to go out and check it out today-dang rain. lol. I will take pics when we do go so you all can see how cool it is and how much fun Blake will be having there.:)
I guess thats all for now! Talk to you all soon!!