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