Follow-up to Blood work visit

Todd called Dr. Malyapa to ask about his cold chills. He told Todd that it sounded like a urinary tract infection so off to the after hours clinic Todd went. While at the after hours clinic, the Dr told Todd that all his blood work came back normal. He did a few more tests and did a complete check up and said that he could not find anything wrong. So now we go almost day 10 of Todd not feeling well. I tell him everyday that I hopes he feels better and hopefully things will turn around. It is hard to stay positive for all of us when nothing is changing!!! I will keep my chin up, Todd has a scan on Tuesday and Dr. Wiseman, here in Knoxville will read it and share results with us on June 9th. Keep your fingers crossed.

Brain Tumor/Cancer Resource Links

So, I had to do a lot of my own research when it came to finding any assistance or help. I thought I would compile it and post it in one location. Hopefully someone will find it and it will be useful to them without going thru all the rig-a-ma-roo I went thru.

For Brain Tumor Support Check out BTS Cares-will help with financial support

American Cancer SocietyMake sure to call your local branch and the 800#. I was able to get support from both the Tennessee chapter and the Florida chapter.

Cancer CareWill provide support for patients diagnosed with any type of cancer. They also have grants to apply for.

Kelly Heinz-Grundner FoundationThis non profit help with brain tumor patients but is limited to helping patients living in Michigan, Western New York and Delaware

This next one is for help with Air fare-none of this worked for us but.....you never know. There are 4 organizations that I called. The first 2 will direct you to your area and the last one is Southwest Air.

Air Care

National Patient Travel Center

Corporate TravelI thought this one was neat! You would fill empty seats on corporate jets. I believe you have to put your name on the list and wait for them to call you.

Southwest AirlinesI can't find the actual link to their charity site. You have to fill out a form and then they call you and discuss travel plans. They will do one roundtrip ticket per calendar year. I did find this number for charity, 214-792-1300. I also believe that Delta will do a roundtrip ticket as well, you just have to make a few phone calls.

I sure hope this helps someone out there. We received assistance from ACS, Cancer Care and Brain Tumor Society. You just have to stay persistent!!! Send me a comment if you have any questions.

Easter Sunday-March 2008

Since I am updating the blog with pictures, I might as well add Easter Sunday. Our tradition for the past 3 years is to go to my friend Amy's house. We do an easter egg hunt, open baskets and enjoy a big lunch. Tyler looks forward to this day as he gets lots of candy and money. :)

This last picture is a pic of Amy's 2 girls, Gracey on the left and Abby on the right. Of course, Tyler is in the center. These kids clean up pretty nice!!!

Tyler and Spring Baseball 08

Just a couple of pictures to Tyler and his team. He is playing for the Fountain City Rockies. He played T-ball with this team, left for a full season and then returned to play coach pitch. We love his coach, Jeff. Actually, all the coaches and helpers are so great! Everyone's motto is that the boys have fun (learn a little too)!!!

Tyler is the far one on the left. Tyler, Daniel, Austin and Tucker.

What teamwork!! Jeff gives a great rally at the end of each game-win or lose. I think this is a great picture of the team-not sure where Tyler is but....

Back to the HOHUMS around here :(

Just when Todd gets feeling better he gets the "bug." Not sure what is wrong with him but he just is not feeling well again. Now, he did start back to work this week so maybe it is just his body telling him he is doing too much. The new ailment is that he is cold in the evenings. I shut the air off in the house earlier in the week and at one point the house reached 78* and he had a blanket wrapped around him!!! What is worse is that he has our heavy winter blanket on in bed at night. Oh my gosh, it's killing me! Todd visited his general physician on Friday where they drew blood. Hopefully the results will be back on Monday.

Just when I think things are back on track we take 3 steps backwards. Tyler had baseball 3x this week and Todd had to sit out on helping because he "just doesn't feel well." I feel sorry and sad for him. We were hoping that treatment would help things and so far conditions have not changed. Only time will tell! Keep praying for him.

Back to work.

Todd went back to work today and everything went great! The "girls" had a surprise welcome back party for him. They did a potluck lunch and made a banner. I think he was very excited that they were happy to have him back!

Nothing else is new around here. Todd went golfing several times last week. I think his energy is finally getting close to normal. I do know that he was exhausted after doing so but he still had the energy to go golfing....one step at a time. I will keep you posted if anything changes. Thanks everyone!

Prayer Request for my "new" friend.

I have made a new friend over the past 2 days. She found me as she was looking for info on the Proton Center and Dr. Malyapa. Her name is Christa and her husband is Ron. They have 3 kids and he has a rare tumor behind his nose. I will post a portion of her email to me.

The tumor is in the clivus bone, which is directly behing the sinus cavity that lies behind the nose. It butts up to the brain and sits between the two corrated arteries. Ron had been having extreme sinus prblems for a bout 3 months (he couldn't hear out of either of his ears), so they decided to do a CT of his sinus cavities. They called us the next morning and told us they found a "growth" in the clivus bone and had to do an MRI for a better look. They confirmed it with an MRI and he had to go in for Biopsy surgery and while he was there they put tubes in his ears to drain the fluid. The biopsy procedure took almost 6 hours becasue of where it is located. They determined it was Clival Chordoma which is a slow growing form of cancer, though they didn't find any actual cancer cells in his tumor, the patholgy showed it was Chordoma. The good thing is, becasue they found it so early, it is still actually small enough where they can do the Proton Radiation becasue it is contained in the bone still. Although this is slow growing, it will eventually grow into the surrounding areas. It is in a really bad place becasue of all th vital organs and tissues which surround it. There is no guarantee that the radiation will actually stop growth of the tumor, but it is a good chance. This condition he has is pretty rare and they don't have a lot of good research on it.

I know what type of journey she is about to begin and she has 3 kiddos to take care of as well. We are going to keep in touch. Please add her and her family to your prayers-she could use anything and everything. Their appointment at the Proton Center is on Wednesday.

Well, I am leaving the GAP.

I am officially leaving the Gap/Gapkids after 5 years. It is time for a new chapter in this book! Too many signs kept popping up so I knew I needed to start looking. I just did not plan on it happening so soon. Hope everyone is sitting down because when I tell you where I am going you are going to say HUM.....LOL

I am going to run a new store coming to Knoxville called The Cupcakery. It opens in June and it is a bakery that sells CUPCAKES. I am so excited. I was nervous when I made the decision but you have to take chances in life. This job is going to be so much better for our family life-no late nights, very short Saturday and NOTHING on Sunday and Monday.

Wish me luck, I am at the Gap until the end of April. I will start with them in May doing odds and ends, like marketing and then the store opens in June. So if you are hungry, stop on by!!

Christa Masters!!!

Hi Christa, I created another email account so email me at FloridaProtonInfo@gmail.com-I did not want to post our regular email addy for the entire world to see. :) Once I get the email from you, I will send all the info I have come up with. Look forward to speaking with you. Kim

Reply to last 2 comments

Donna-Silver Point is about 1 1/2-2 hrs from here. It is basically in the middle of nowhere...LOL. Our guess is someone from Bonnie's church or a friend of a friend thru Todd's work. Thanks for trying to help us figure out the puzzle. LOL.

The anonymous person on one of the last posts-Your sick!! I can not believe you would say something like that!

Once again, Thanks to EVERYONE who has been positive and who prays for us on a daily basis. Keep up the good thoughts, not negative like the last person! Thanks all!!!

Who is the Silver Point Person? Please let us know :)

Ok, I am dying to know who this person is. Who ever this person is checks every day!!! I have googled that area and we know NO ONE in that area. Now my regular "blog" checkers are asking if I have found out and I have NO CLUE!!!! Silver Point person, drop me an email or leave a comment-any hint would be great!

Back on the "Pill" again and it is not ME...LOL

Like I said last week, Todd was going to completely come off of the steroids on Tuesday. Tuesday went great and then today, Wednesday, Todd woke up with a pounding headache and an upset stomach. So, back on a small dose of steroids. I am not sure what the next step for him is with this crazy pill!

How many times can I say that we are ready for this to end? I just want things to go away and our lives not be consumed with "brain tumor" stuff! Talking to someone at the store today made me sit and realize that no matter how bad things seem at our house, that someone out there has it much more worse. Bottom line, we just need to appreciate those around us and make sure they know we care!

Will update after the weekend. Keep prayers coming!