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The journey of my family's struggle with a Brain Tumor. Cancer Sucks but the days continue so we must continue on as well... with a fight!

Thursday, February 28, 2008

Wednesday and Thursday

Not sure what day number it is because the center had to reschedule 2 of Todd's appointments. Anyways, Todd met with Dr. Malyapa on Wednesday and he told Todd that Wednesday was the half way point-I thought we had already reached that! Anyways, he Dr. Malyapa took Todd off the steroids. He told Todd that he noticed that he face with swollen, due to the steroids. He also said that him and Todd would talk frequently and if he was feeling bad then maybe they would start back on the steroids again. Who knows

I spoke with Todd today and he told me that he was feeling the worst that he has felt since he started on the treatment. I asked how he was feeling and he said "Tired, upset stomach, and headache." He thinks it was because he came off the steroids. What is he to do? Feel bad on the drugs or feel bad off the drugs? He told me that if he continues to feel this way thru the weekend then he would ask to be put back on them on Monday.

I thought about rearranging my work schedule this weekend and surprising him on Saturday but I think it is best not to take Tyler out of school any extra days next week. If he seems to be feeling crappy, I might take off by myself and leave Tyler at Greg and Angie's for Monday/Tuesday. I haven't told them that yet, but we will see-I can't leave Todd there all by himself to feel sick. Not sure what I am going to do.

Tyler had major life meltdown on Wednesday night and Thursday morning before school. I kept asking what was wrong and he kept saying "I'm frustrated." We went up and snuggled in bed and talked. In the end, he told me that he was ready for Daddy to come home. The guy has been such a trooper in all of this and I guess it was time for him to let it all out. He did tell me that he has been meeting with the Guidance Counselor at school weekly just to talk about "life." I am so glad that the school has been supportive of us. Speaking of school, We went to a roller skating event tonight and I ran into a mom that I knew. She asked about Todd and told me that her son told her that Tyler's dad went to Florida to have surgery on his head and have part of his brain removed......cute. It made me chuckle a little because that is how a 7 year old interpreted things.

I will update again on Saturday or so. Keep Todd in your prayers that he gets feeling better!!!

Tuesday, February 26, 2008

The begin of week 4

I think anyways...LOL. Wow, the time has really flown by! Todd made it back to Jacksonville very easily yesterday-Monday. He took the 6 am flight and was in Florida by 10 am. I can't believe how easy it was for him.

I have talked to him several times today and he was incredibly tired. I think he took a few cat naps. He told me he felt like it was because he had 2 treatment with in 12 hours of each other. Dr. Malyapa was already gone last night and had some scheduling issues this morning so they told Todd that he would meet with him tomorrow. I sure hope he takes him off the steroids!!!

Nothing else is new, I feel like I am telling everyone the same things every day but I know many of you like to hear the daily updates. We are so blessed to have friends and family this concerned-Thanks!!!

Sunday, February 24, 2008

Everyday Question

My everyday question from EVERYONE is "How is Todd feeling?" The answer is: Tired, Grouchy, Tired, and more Grouchy. He is on a steroid that sets his mood off very quickly. I think he has had road rage too...LOL I know that this will all be over soon and he will be back to his ole self-nice and laid back.

I think he rested well this weekend so that is good. Hopefully, he can get back into his routine by Tuesday and get his life settled back down. All 3 of us have been on the go with him since last Thursday so maybe some boredom would be good.

Thanks for everyone asking, we greatly appreciate it!

The weekend has come to an end.

Todd will be flying back to Jacksonville tomorrow morning. Once again, he is flying standby. I just went to Delta website and all morning flights are full so.....he is going to try and catch the 6 am flight. He is going to take the car to the airport and then my good friend Amy will take me to get the car-what a rig-a-ma-roo. Luckily, I am off tomorrow and have NOTHING to do. Todd's treatment is the last appointment of the day and it will be at 10:45 PM.

I will update more on Tuesday after his appointment with Dr. Malyapa. Thanks everyone!!! Keep praying.

Thursday, February 21, 2008

All of us are home together for a few days!!!

Tyler and I made it home-finally-on Wednesday. It took several full flights but we finally arrived around 1pm. Tyler went to daycare and I went to work. Today, Thursday, Todd had his appointment at 6:40 and then went straight to the airport. The first flight was full but he made it on the second flight. The one to Knoxville only had 1 left seat-some one was on our side! Yippee!!! The center is closed tomorrow for Admin day and his appointment was changed on Monday to 10:45 PM, yes that late. So, I think he will have a nice long weekend at home!

We are all home together for the next few nights. The dogs, especially Levi is so happy to see him. He has not left his side! Tonight, we are going to be lazy and do our usual Thursday night things....pj's on by 7:30, Survivor at 8 and Apprentice at 9. LOL. Can't wait. Todd is excited about sleeping in his own bed. I do have to work all weekend so I think Todd will spend a lot of time with his brother, Greg. I know that they are getting together on Saturday to watch the UT vs. Memphis basketball game.

Thats it for now. A shout out to everyone who has been on our sides and saying prayers. I/We have received lots of cards and some gifts. So thanks to everyone!!!

Tuesday, February 19, 2008

Our St. Augustine visit

On Monday, We took Tyler to the Nations oldest city for a history lesson :). We stopped by the outlets on the way and then we ran over to see Todd's friend, Randy. We told Randy that we were taking Tyler to see the Fort and he gave us free passes to ride the train. The Red Train took us around the entire city of St. Augustine and gave us the history and showed us the important landmarks of the city. We all enjoyed the ride very much. I was amazed at what I learned. This train ride was 1 1/2 hours long and I kept asking Tyler if he was bored and he kept saying "No", he actually said he like hearing about the "stuff" LOL.
I created a slide show of some of our pictures-I think there are 15 or so pictures, the landmarks were beautiful and old....The picture of the big tree is a 600 yr old tree. It sits in front of the Fountain of Youth. What a great time we had on our trip to St. Augustine-Thanks Randy!!!

Todd's Address

Here it is again:

Todd Bloomfield

400 East Bay St. Suite 603

Jacksonville, FL 32202

I want to thank EVERYONE who has sent me or Todd a card. We greatly appreciate it.

Here we go again.

Well, here we go again. Tyler and I *tried* to catch a flight out of Jacksonville today. Actually we tried for 4 flights and all were booked going to Atlanta and Cincinnati. I finally put our name on the 7:50 pm flight but my friend who got us the buddy passes just called and said for us not even to go because the flight before has 63 people on stand-by and those people will overflow to the 7:50 flight. We will attempt to catch the 6 am flight to Atlanta in the morning and then run home, change clothes, drop Tyler off to school and then go to work. What a long day tomorrow is going to be for the 2 of us. Tyler has been an EXCELLENT travel companion.

Lesson learned, don't travel on buddy passes during holiday weekends or major sporting events-Daytona 500.I guess now, I can upload lots of pictures to the blog and work on that this evening.

Tyler did have STREP.

After a long and very boring weekend-the doctor from the Minute Clinic(on Monday) called said that his test that was sent off came back positive for strep. You could definitely tell that he was not himself on Saturday-we tried to go to the 2008 Car show. He made it about 1 hr before saying he felt bad. Then again on Sunday, he was very slow moving till around 5 pm. We went out to dinner and he said he was feeling better. Monday rolled around and he felt like a new child. We went to St. Augustine for the day-post and pics to come

So between Saturday and Sunday, we did not get out of our pj's till around 3 each day and we rented 4 movies, all which stunk! What a boring weekend but now we are all very well rested. :)

Day 11 and 12

Day 11: Bright and early-6:40 am-Todd made it to his appointment. Tyler and I did not go. On Monday, he spoke with Dr. Malyapa about his sleeping issues. He has not been sleeping or getting up around 4 AM and the blame is on the steroid he was taking. Dr. Malyapa took him off the evening dose and told him to see if that would work. Other than that, things went well.

Day 12: Todd did not take the steroid pill last night and he slept great, or better! Treatment went well as usual.

The patch is 100% gone. Well, he lost it but he still has not had the need to use it. Hopefully, something is working in there! Keep praying.

Saturday, February 16, 2008

Anyone can leave comments now.

I changed the settings so that anyone can leave comments. Before you had to have a blogger account. Just wanted to let everyone know.

Day 8, 9 and 10

Day 9 was cancelled because they were having trouble getting the proton beams into the gantry-whatever that means. So Todd made 3 separate trips to the center. Now this will push us into the next week. They will not do 2 treatments in one day on him. Day 10, which was Friday was his first 6:40 appointment. He said it was early but it went faster as he did not have to wait as long.

This week Todd spoke with 2 other pituitary Brain Tumor patients. One was a lady was about his age and had a rather large tumor that was behind and pushing on her optic nerves. Her physicians removed a large part but did not get all of it, she had another surgery to get the rest. Now her tumor is starting to spread to her brainstem. She is more than 1/2 way done with proton therapy. The other person was a 50+ year old man, he has a pituitary tumor behind his optic nerves/eyes as well. I am glad that Todd is starting to talk to other people-it is nice to know he is not alone.

All patients go on about the treatment that they have received from the staff at the Proton Center. I am so thankful that these people understand. It makes it easier to leave each week.

We made it to Jacksonville, finally.

What a long few days. We left very quickly after school on Thursday to *try* and catch an earlier flight out of Knoxville. We had no problems getting out of Knoxville but when we reached Atlanta we found out that there were NO flights going anywhere in Florida that had open seats. Apparently it is the Daytona 500, Bike Week, some Hawaiian festival and Presidents Day Week and people are trying to get into Florida. Tyler and I put our name on the stand-by list for the last 3 flights but we were numbers 45 and 46. LOL. We finally ended the night by going to the Best Western. We fell asleep around 12 and woke up at 4:30 so we could try and make the 7 am flight. We made the flight and were in Jacksonville by 8:30 am. Glad to be here


About 3 hrs being here, Tyler complained of having a sore throat-many of you know he is prone to Strep. Just to be safe, we found a Minute Clinic. She tested him for Strep and it came back negative so that is good. We took it easy the rest of the night but in the middle of the night he was up again saying he did not feel well. Another long night. Just letting everyone know that Tyler and I made it. I will give an update on Todd in the next post.

Wednesday, February 13, 2008

Happy Valentine's Day

Todd sent me Tulips today at work. It was so nice to get flowers!!! Tyler and I really miss the guy and can not wait to get to Florida tomorrow night. Happy Valentines Day early to everyone. I hope that everyone can be with the one's they love. Appreciate those moments.

Photobucket

Thought Tyler would like Spongebob.

Day 8

All is still well with Todd and the Proton Therapy. The patch is still 1/2 way around. Today they gave him a new appointment time of 6:40 AM starting Friday. Yikes, that is too early for me. He said that he is OK with it because of the steroid he is on it seems to wake him up around 5. His thought was he could come back and rest. That way maybe he would have more energy in the afternoon. We will see. I know, Tyler and I will not be joining him for his morning treatment!

Tyler and I are going to try and catch the last flight out of Knoxville on Thursday evening, if not, we will take a flight on Friday morning. We are flying on stand-by so you never know. We will be there thru Tuesday. I will definitely keep everyone posted. Keep praying.

Day 6 and 7...

Well, the patch is 1/2 way back. Todd needed it for the weekend and Monday but he told me today that he did not use it. Who knows, one day at a time! Yesterdays and todays treatment went well. After yesterdays appointment, Dr. Malyapa wanted to touch base with him. He showed Todd the map of his brain and exactly where they are shooting the protons. Todd said it was pretty cool. Dr. Malyapa said all was going expected-what does that really mean?! He also told Todd to try and wear a bucket style type of hat to protect the back of his head and neck. HEHE. I can not see Todd wearing this type hat. He told me that he would start wearing his ballcaps backwards.

I have had sooo much great feedback on the blog! I am glad that people are reading it. I had several customers that have become friends stop by today just to "check" in. It has also allowed me to reconnect with friends that I/we have not spoken to in awhile. Todd told me tonight that I have more support than he does. I told him it is because I have FRIENDS!!! Of course, he said that jokingly.

Well, I had intended this to be a long post with pictures but I am a little behind so I will keep doing the daily updates and then in the "spare" time I will work on the pictures post. Thanks everyone for caring.

Tuesday, February 12, 2008

Check Back

I have been working on a post tonight and it is taking me a while to get it together. I am putting in lots of pics and updating everyone on who is who. I will try and finish tomorrow before I go to work. Thanks for checking! Oh by the way, things went well on Monday and Tuesday for treatment.

Saturday, February 9, 2008

The Map

I love looking at the Map on the bottom of the blog to see where everyone is coming from. So, I do not know who my California person is.....Mystery. Would love to know who you are so please leave a comment!!! I am updating close to every day and will post again on Monday after Todd's treatment. Keep praying!

Todd's Address

The other address has fallen of the page so I wanted to bring it back to the front page.



Todd Bloomfield

400 East Bay Street

Suite #603

Jacksonville, FL 32202

Day 4 and 5 of 30

So both days went well. I was excited to hear from Todd that he did not have to wear his eye patch on the way to the center on Thursday (To drive, he has had to wear an eye patch no matter where he goes) AND then he called yesterday while I was at work to tell me he did not wear his eye patch at all on the drive. You could tell that he was excited but I told him not to get his hopes up too much but that I was very excited for him!

Today is Saturday and I spoke to him this morning. He is going to meet a friend, Randy for lunch. Randy works for VF based out of the St. Augustine store. I was super happy to hear he was going to be seeing someone. I was afraid that this would be a long boring weekend for him.

Keep praying for him and us.

Wednesday, February 6, 2008

Day 3 of 30

So Tyler and I left today. I *think* I have him pretty set up for the next 7 days. I got the pantry stocked with the foods he likes-he just needs to get fresh veggies and fruits, I signed him up for a mail service on his PS3 games-so he does not have to drive to Blockbuster and left emergency contact numbers at the concierge desk.

Today's treatment was the same-the big black hole. I believe he is starting to slow down and get more tired but he has plenty of free time to relax. I probably will not post for a few days unless something changes. Tyler and I are going to fly out on Friday the 14-thanks to my friend Haven who has given us 2 buddy passes for this trip-roundtrip from Knoxville to Jacksonville. Much nicer to fly direct!!!!

Tuesday, February 5, 2008

Day 2 of 30

Today went "Easy Breasy" at Todd put it. We got to the center about 45 min early and just sat around. I realized that I am very thankful for our situation because there are people a lot worse off than Todd. I saw the "good, the bad and the ugly" while sitting there. At one point, I had to get up and refocus because I felt the tears coming soon. On the brighter side, there were many men-older men-waiting on their prostate treatment and they were just as happy as larks.

So the proton center is a facility meant for prostate cancers, lung cancers and head/neck cancers. While we were sitting there I said to Todd "I think some of these people could be our grandparents!" Everyone there today was 75+ years old. LOL. I don't see Todd finding a buddy in that group but you never know.

After treatment, Tyler and I went to the Museum of Science and History-MOSH. We had a good time. Todd wanted to rest so we left him alone for 3 hrs-I think he enjoyed the quiet time. The neat part of our trip was that we took the Water Taxi. What a cool concept and Tyler thought it was cool. The water taxi took us across the river right to the museum. Best part about it was that we got on the taxi right in the "backyard" of the complex. I have a few cool pics that I will have to upload so stayed tuned!

I leave tomorrow and I kinda worry a little bit. I mostly worry about him driving as his vision is not so great. I think the parking garage is going to be a big challenge. Todd assured me that he won't be "roaming" the city. I talked to my mom tonight and she assured me that he will be fine as he had been doing normal activities for months. I will stop by the concierge desk in the morning and leave them my numbers-just in case. Keep praying.

riding the water taxi

Monday, February 4, 2008

Day 1 of 30

Today was day 1 and it went really well. Todd said it was like going into a big hole which he called the Abyss. They had his head strapped down by the keflar (sp) mask that was molded to his face and attached to a board. Then his mouth was in a mouth piece which was attached to the mask. Bottom line, he could not move his head or jaw. The process took all of 30 min and he said it really was not too bad.

Today he has been a little loopy and tired. Tyler has been running around like a wild monkey so I have tried to keep him occupied. We went swimming, went for a walk along the riverfront and did some shopping. Hopefully once we are gone, he can relax and watch life go by. I did walk in on him napping, which is very unusual, so I know that he is not feeling his best.

All in all, it went well and he has 29 more to go. Keep us in your prayers!

WOW, What a gift!!!

I received an unbelievable gift from work the other day. For those of you who know my friend, Susan or who Tyler calls Crazy Susan, she wanted to start a "money" drive to get a $100 gas card. Well, she called all my mall friends, Amy and her parents just to say she wanted to give us a gas gift card. Well, this was started on last Sunday and she told me that the first person who donated gave enough to cover the gas card-at that point she said "oh, I need a bigger goal." Well, by the middle of the week she had raised as she calls "10 gas cards" and she still had people telling her they were going to give. Long of the short, She was a proud momma as she gave me a huge pile of cash and a homemade card with everyones name who had contributed. There were 37 people who gave and the amount was more than I could have ever expected. All she expected in return was a hug, lol. (I am not a hugger).

Thank you to everyone who gave to us. The money will definitely be put to good use. Also, thanks for caring about us.

Saturday, February 2, 2008

Almost ready to go...

Well, we will be leaving-Sunday 3rd-in the morning and it seems that there is a lot of "stuff" to get ready. Just trying to get "life" wrapped up for Todd seems to be the hard part. Today he is not feeling all that great, I have noticed that he is off balance a lot and that is because of the double vision. Also, he is incredibly grouchy but Tyler and I just go with the flow.

Many people have come to my side to help with any changes the next few weeks. Lots of dinner invites and many people will be taken up on them, especially the neighbors. Glad to know that we have friends! 6 weeks will go by so fast with us traveling to and from.

Lastly everyone keeps asking me (and Tyler) if we are OK and I keep saying "YES." It makes this transition easier knowing that Todd is excited about getting Proton Therapy. I asked him the other night if he was nervous and he said "No" that he was more excited because he was hoping that by shrinking or eliminating the tumor it would help him feel better. I guess we don't understand how it feels to feel crappy everyday. Everyone, please keep us in your thoughts and prayers as we travel tomorrow and he has his first treatment on Monday at 10:45.

I will be setting up a separate email addy for Todd within the next few days but until then you can either leave comments or respond to our home email address. Also, I will post his address again for those that want to send a letter or card. I am sure he would love to hear some encouraging words. Todd Bloomfield, 400 East Bay Street Suite 603, Jacksonville, Fl 32202. I will update everyone on Monday to how the first session went.