Sun Jan 31, 2010

A VERY excited Kirsten!

Blake and Kirsten had a BLAST at Sesame Street live, as did Jackie and myself. The kids were dancing and singing-trying to talk to the characters. It was so cute. On Sat they both looked hung-over lol. Im sure it was from all the cotton candy they ate! Both kids got a tshirt and stuffed animal. They were VERY happy kiddos! I am so grateful to Marcia for the tickets! It made our day for sure!!

Washing off all the sticky cotton candy!



Well, tomorrow it all begins. We are heading to Children's Mercy in the morning for Oncology to run all the labs they need before we start Blake's chemo regimen. Tues morning Blake goes in to get his port and g-tube. They will put him under to perform both surgeries. We will stay overnight at least 1 night for Blake to be monitored. Im a little nervous for Blake-but I know he is in good hands! Say a prayer for him-the g-tube is gonna be the sore one. I know he is a trooper when it comes to tough things. :) I will let you all know how it goes!

The 'hang-over' look. lol Notice they are both still wearing
their shirts from the night before.



Thur Jan 28, 2010

Just got off the phone with St. Judes. They said they agree with the treatment Childrens Mercy has for us. So we will be staying in Kansas City. I called Dr. Shore and let him know we are proceeding with them. They are going to call me back and let me know the dates for Blake's port to be put in, and apts for his chemo. I am SO happy to have a plan. St. Judes is very familiar with Dr. Shore and told us we are in really good hands. St. Judes will keep Blake's info and stay in touch with us-in case a new protocol comes open. Blake is doing well right now-so all the doctors agree now would be the best time to start chemo. While he is still strong. :) Phil and I didnt really have a preference, we just wanted the BEST for Blake. I know one of the things I liked about St. Judes is NO medical bills, and the fact that they take care of EVERYTHING while we would have been there. With Children's Mercy-there will be a lot of bills. I know everything will work out. It will be nice to come home after treatments and stay in our routine and have Phil here. So we are happy with the decision.
More good news-Blake's TLC therapist Marcia called me Wed. She said her husband had free tickets to go see Sesame Street Live. She thought of Blake and how much he loves Sesame Street and asked if I wanted the tickets! Of course I said YES!! Then I realized I am babysitting Kirsten on Friday...so Friday I am taking Blake and Kirsten to see the show. lol. Jackie(my cousin) is going with me-thank goodness!! lol. I am pretty excited about it! This week has been a pretty good week!
Thank you all for your amazing support!!

Thur Jan 21, 2010

Well with good news comes bad news.
The Good:
This morning I received a call from the "Make A Wish" people. They called to confirm that Blake gets to make a wish!! They are sending us some more info in the mail. I have a little bit of an idea how it all works, since one of the mom's at Rehab's little boy just had his wish granted. I will keep you all updated as we receive more info. This is going to be so exciting!
The not so good:
This morning not too long after we received the Make A Wish call, I received a call from Social Security. We have been going through the process of applying for SSI-disability. After talking to the rep. she let me know that since Phil is getting overtime, we dont qualify for disibility. I asked if Phil stoped getting overtime if we would qualify, and she said that we barely would. I guess we are right under the cut off for what you can make monthly. So that really stinks. I was hoping it would help us out on top of Phil's overtime. We cant cut back on his overtime-that would just be silly. I know that everything will work out-its just really stressful when you have no clue how it will work out. I am trying my hardest to be positive. This hasn't been the best week for us-as far as news goes.
I do have one more positive/good news to end with:
My fabulous bosses and Union Hill Day School got ahold of me on Tues. asking if I had any time this week to come up to school and do some side work! So tomorrow I get to go to work while Blake is in therapy!! Its only for a few hours but it will be so nice to make some extra money!! I really am so lucky to have such amazing bosses! Thank you all for all your positive comments and prayers! I will talk to you soon!

Wed Jan 20, 2010

Well, I am bummed out!! I emailed St. Judes to make sure Blake's case was going to be presented today, and come to find out they still hadn't received the slides they needed. I called Childrens Mercy to find out why they weren't there yet, and Pathology gave me a tracking number. I tracked the package to find out they sent them YESTERDAY!!! Not Friday when they told me they would send them. Ugh!! So now Blake's case wont be presented until NEXT Wed. I am so frustrated!! I tryed to get them to send it Friday and for whatever reason it didn't go out till yesterday. I know there is nothing I can do now but wait until next Wed. Ugh!! Sorry everyone-we all will have to wait another week. Boo!! The good news is that they did receive them today-and they will be able to get them ready for next week! Patience, patience, patience. Im getting tired of the waiting...lol.

Fri Jan 16, 2010

Finally heard from St. Judes. They have received all the info and half the slides they needed. I called Childrens Mercy to see if I couldn't speed up the request for the other half of slides they needed. Being persistant and assertive is becoming a lot easier for me. Im finally learning. lol. So I got them to agree to slicing it now-and sending it out today and overnight through FedEx! For those of you who dont know me that well-I am not an assertive person. lol. Then, I called St. Judes to let them know they should be recieving the slides by Monday. She let me know that if they get them before Tues. Blake's case most likely will be presented at the Brain Tumor Conference on Wed. Worst case we would be looked at the following Wed. I am so excited that we will finally be figuring out the plan! If St. Judes has the same plan as Childrens Mercy, we will stay here and get treatment. If St. Judes has a clinical trial going on that we qualify for-or have a different treatment plan-we will review and choose which plan we feel is BEST for Blake. I am feeling very optimistic!! Thanks for all the positive thoughts and prayers!!

Fri Jan 9, 2010

Well we have new info on Blake. We went to see the neurologist today. He let us see the MRI's and we had LOTS of questions since we have had time to process a lot of stuff. Blakes tumor is on his Brain Stem. Its on the middle-upper part. I cant remember the technical term. Sorry. We have talked about it and have decided if we are ever going to get a 2nd opinion-NOW would be the best time. So I am getting ahold of my St. Judes contact, I got the info back when we were getting his MRI's. Good thing I did huh?! So we will hopefully get everything lined up and will be heading to Tennessee soon. I cant thank you all enough for all the prayers and all your support. I find myself very touched when I log on and see that you have left me messages! They mean a lot to me. This is a scary situation and having your support makes a difference!! So thank you! I will keep you all posted on any new development!!

Thurs Jan 7, 2010

Ok so we had our big apt today. He is on a 42 day cycle. Blake will start 3 types of oral chemo, and one that they will insert into his port. He gets his central line(port) in his chest next Thursday. Then the following Monday we have another apt with Dr. Shore. I think its to get his prescriptions and all the rest of the info. They said Blake will loose his hair-im having a hard time with that. I know its silly. Im sure when the time comes I will be ready. We are all dealing as well as we can. Its scary. His treatment is scheduled to last 48 weeks-so almost a year. We will go in every week to get a blood count. His MRI's will be every 2 months rather than every 3 months. Im still a little emotional-so im sure when the shock wears off I will remember a lot more info. Thank you all for keeping us in your prayers! All the support means so much to us!! I will keep you posted!

Wed Jan 6, 2010

Well its 2010! We celebrated our New Years at home. Blake broke out in a full body rash new years eve, so we didnt make it over to Megan's for New Years. We were all in bed by 8:30pm lol. It was a quiet one this year. Phil also wasnt feeling well. We think it was a virus that he got-by Monday he was fine. He never had a fever or any symptoms. Weird huh?! So tomorrow is the day we have patiently been waiting for. We go talk to Dr. Shore at 1:45pm. Im sorta glad its not until the afternoon-with all this snow im hoping the roads will have been cleared off. Blake is really enjoying the snowfall. He keeps going over to the window and just staring as the snow falls. He also likes watching the squirels jump through the snow. It makes him laugh. He has had a nice winter break. TLC-his preschool has been closed since the Monday before Christmas-and this week due to the snow-they are still closed. This is his 3rd week off. Therapy is going well. He has been pushed back to the end of March now for an estimated discharge date. I am getting used to it getting pushed back now. lol. There is talk of dropping him down to 2 days a week rather than 3, everyone is waiting to see what Dr. Shore has to say. There is a lot pending on this apt. I am looking forward to having a 'plan'. I hope you all had a Happy New Year! I am sure I will give you guys an update tomorrow after our apt. Thanks for keeping up with us! It really makes a difference knowing so many people care, and are praying for us! You are all amazing!!