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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!

Friday, February 24, 2012

We've Moved... and updates.. Thanks

Yes, we have moved to the dining room. I think we will be the only house in the neighborhood with cable hook up in our dining room. :)

We (I) choose to move us downstairs since Todd's mobility is virtually nonexistent... He is no longer able to hold his weight up and even struggles transferring to the wheel chair. It is so sad to see how bad his mobility has become. His coordination has really gone down hill as well. He can still feed himself but I prefer for someone to be around at all times and he easily gets choked up. His bathroom duties are strained and once again, I prefer to make sure he has help.

With all this being said, not only is it hard on me and Ty... it is now taking a toll on him emotionally. He has lost all control over virtually EVERYTHING. He really has no voice in anything and I know this is killing him on the inside. I've tried to give him the benefit of the doubt when he says 'I can do it, I can do it' and then we have an accident... whether it be falling or bathroom incidents. He fell 2x in the beginning of the week (all being stubborn and not letting anyone know he was getting up) and he looks like he was attacked by a cat. He forehead was cut/bruised, he had a huge scratch going down his cheek and he misc scratches all over his face. It's in his best interest to let someone help... truly is!

This week he has started to have some breathing problems however if you ask him, he is fine. Our moms and 2 of the therapists heard congestion in his chest so on Thursday I had them check out his chest... Dr. Avery told us that he is probably drinking while laying down or not sitting upright and there might be a little bit of fluid going into his lungs OR his lungs are weakening and that's where they hear the raspyness. Either way, he was encouraged to sit up while drinking and they also gave him an inhaler for those 'just in case' moments. I think he is gasping for air most of the time when he is in some kind of motion. Again, something else to worry about.

Todd's been so accepting of the people coming in and out of the house, especially people he barely knows.. His longtime friend Ray, who he hadn't seen in a few years, is coming by and helping out. I know he enjoys seeing him because it's his friend and not mine... LOL.. I know have Ray volunteering 1 day a week. (Not sure he knows about it yet though, lol)

Speaking of volunteers... I've been finding people to help from the 10ish-2ish time frame. This allows Todd to sleep in and have a few hours of peace. Then in the afternoon he can relax and wait on Ty to come home. I need that time frame since I don't want him eating or moving around by himself. I make sure he is all set in the mornings, then the mid person then Ty from 4-6. Yes, this is a lot of responsibility for an 11 year old but this week Ty has really stepped it up. The past few nights he has not gone upstairs to play online because he wants to stay with me to 'help.' Back to volunteers... I am using our family members, neighbors and friends. Many of my friends/family want a permanent weekly 'shift' so I am working to make a schedule that fits everyone's needs. You all truly don't know what a blessing you all have been to us!!! I think I will try to take a few extra days off within the next few weeks/months. If worse comes to worse, I can tackle FMLA... This will allow me to spend more time helping him and making him not so uncomfortable when others come into the house. I will then use the volunteers to fill in the other hours. I'm not sure how it will play out so...To be continued...

My head is so full that I am having a hard time keeping up with 'stuff'... nothing major, I just forget things so If I haven't responded it's because I haven't gotten to that part in my brain. :)

I do want to send out a few THANK YOU's for gifts we have received this week:

  • Tom and Julie Carpenter-Pops brother and sister in law
  • The office staff and Ted's work- Todd's dad
  • Sunday school class from Mom's church
  • Multiple monetary donations via paypal- bracelets were mailed today (sorry that I was a few days behind on those who 'ordered' bracelets a couple of days ago
  • The Belew's (the secret gift)- our neighbors

As always, my friends and coworkers who put up with our craziness.

Thanks everyone!!!

The Clan

Monday, February 20, 2012

Jumped the gun...

Ok so I am going to exhaust all my VOLUNTEER options first then pay someone when I am in true need... this way it will help us out. I will work on a volunteer sheet and let u know when it is ready to be used...

Thanks guys!!

A Big Thank You...

So my 2 co-workers, Lora and Amanda, put together a money drive to help with cleaning and/or misc expenses. I don't know who donated however I wanted to THANK those who did!!! The girls wouldn't give me the names so I had no way to Thank anyone so here you go...

Thanks to all who gave money to the fund... I am appreciative for everyone's support and I am thankful that everyone puts up with my crazy ways. :)

Thanks for helping us in a time when we definitely need help!

:)

Friday, February 17, 2012

2008 to current family photos

Through the years photos...

I found pictures of the 3 of us from 2008 to current. The 08 photos are after he did treatment in Jacksonville and he looked very healthy and happy! I will have to go back and do 2008 and earlier as I know they are probably pretty funny.

You will notice that the pictures from Christmas and current really show how swollen he is from the steroids. I keep going back to our pictures from the beach in October and thinking how 'normal' things were, how fast things changed and too bad I didn't know then what I know now... I only wish I had a time machine!

Thursday, February 16, 2012

Knox Dr. Appt today

We met with the NP, Tiffany today.... She wanted to see him since he had been on the new chemo for a full week. (11 days to be exact)...

Her biggest concern was now for his safety while at home alone. In previous days, I said he was so-so on his feet. Well, now he really doesn't need to be walking around unattended at all. I told him last night that I felt like I could not adequately care for him when he falls at home. It's like dead weight and I can't pick him up...shoot, I can barely support him when he starts to sway. It was a very hard conversation to have but I needed him to understand how serious and concerned I was regarding his falls.

He fell today with Greg (Todd's brother) and Greg told me that he even had a hard time helping him back to his feet... we think he broke his thumb however he did not want Tiffany to X-ray it. He said it hurt really bad and by the time I left him it was swollen and bruised. Luckily, it is only a thumb and I will get something to protect it this afternoon.

Tiffany finally got him to agree that he doesn't need to be moving around the house while no one is home. They have ordered him a new wheelchair (one with big wheels so he can move himself) and gave him a urinal. This way he is not getting up on his feet. She gave me the names of some centers to call regarding afternoon 'sitters' but after talking to Blue Cross Blue Shield we don't have respite coverage. Any 'sitters' will have to be friends/family or paid out of pocket (be on the lookout for a volunteer sheet). I am going to continue to abuse my neighbors for another week or so while I work on the next plan. I really want to see how the wheelchair works out first...

He got pretty upset with her and almost seemed teary-eyed when she wanted him to 'move' downstairs... He said he is away from me and Ty so much as it is since we work and have school, that sleeping downstairs would be hard for him emotionally. She agreed that as long as someone was there with him for the steps that he could continue to 'live' upstairs until things changed. The guy has been through so much and his world has been turned upside down that I will do whatever is necessary to keep him happy as long as I can.

I am allowing everything to sink in for the next few days and then I will tackle a new plan. Thanks for all the advice that has been sent our way. I will keep you posted. :)

Keep on praying... we need a miracle!

The Clan...

Wednesday, February 15, 2012

Update... not really much of one

I've had many people asking for an update so here one goes...

After a very emotional week last week, we are all back on track and 'truckin' along in good ole Bloomfield fashion. Things have definitely changed however we are rolling with the punches and making adjustments day by day.

Nothing has improved for Todd in the past 10 days (new chemo started 10 days ago.) If anything, we have seen a slight decline in certain areas.
  • His mobility has declined... he is very shaky on his feet even with a walker. The steps are becoming more and more of a challenge and I no longer allow him to go up or down them without supervision. He has finally opened up and allowed help from others so the past few days I have had a neighbor go over mid morning to make sure he gets down the steps. This way he doesn't have to go downstairs early before I leave for work.
  • His hand eye coordination is not good... he now struggles with holding stuff adequately or feeding himself. He definitely can still feed himself however it takes him longer and sometimes the hand to mouth action isn't so easy for him. He also can no longer text or type very well (most frustrating to him.)
  • Memory is about 95% sharp but he has a few moments of forgetfulness or confusion.

I am concerned about his safety when I'm not home and I am very thankful for others who are willing to check in on him throughout the day. I'm sure this will get old at some point for them however I will take the help as long as I can. I've had a few people give me suggestions on agencies so I will reach out to them and see what their 'scoop' is.

I will follow up with another post regarding today's Knox Dr's appointment.

As always, Thanks for all the prayers and well wishes!

The Clan...

Monday, February 13, 2012

No One Fights Alone Bracelets













So I want to thank one of our Greyhound Friends... Kristie, for the purchase of the bracelets. They are GREY for Brain Cancer and they say NO ONE FIGHTS ALONE. Any donations we get from them we are putting the money towards our medical bills.

You will need to have a Paypal account... Let me know if you have any questions and please pass the blog on to anyone you might know for prayers!!!


Wednesday, February 8, 2012

Where to start?

Yesterday I think was one of the lowest days I have felt in a very long time...

I received a phone call from Tiffany at Dr. Avery's office. She's the nurse practitioner who we really like and trust. She told me that her and Dr. D (Duke) had just spoken about the plan for Todd... She informed me that there was another very small lesion in his midbrain. He is going to do this new chemo for the next 4 weeks then have a scan, in addition we have a Duke visit scheduled for March 19th. She went on to 'advise' me that she thought we were close to needing to have the 'prepare and plan' talk since he was still cognitive. From that point forward, I'm not really sure what else she said...

I was actually at work when I spoke to her so I shut the door and had a full breakdown... one of those ones where its too hard to catch your breath. I called my neighbor friends to see if they could get Ty out of the house while I went home to have the 'talk.'

I had my whole world crashing down on me between 415-430. Right after that, Dr. D called me from Duke to say YES, there is a new very small tumor on the midbrain however we have a few more options to try and as long as Todd is willing to fight and his quality of life is still OK, then we will still fight. She said that we all should be in 'prepare and plan' mode because we just never know.

I got home to talk to Todd and he was kinda ticked that I brought up what his 'plans' were.. He said we were told in 07 that he wouldn't make it past the year and he's still here. He said he's not quitting and he will fight as long as he can. So... this is where we are today.

My heart is aching all over again because we did go through this many years ago... I don't wish this on anyone! Right now we live day to day and the fear of uncertainty.

We will move forward the next 4 weeks on this new treatment and I hope and pray every day that we see some type of improvement if not we go to plan c or plan d. Nothing like playing the waiting game.

Thanks for the continued prayers!

The Clan...

Tuesday, February 7, 2012

What a weekend...

Let me first start by saying that we are all good and dandy now (well, so to speak.)

I can really say that we had a really rough patch last week. When we got home on Thursday, I felt like the walls were crashing in on me/us. I was a complete crying mess and pretty much continued that way until Sunday night. I called myself 'sensitive' to my friends and the thought of all this cancer 'stuff' was going to be my demise! At one point, I thought I might need to go see someone...

So you ask why (if you really had to ask) well... here's the list of crying reasons:
  • The overall uncertainty of 'life' at the Bloomfields
  • How can I take care of another person while working (ask for help from others!)
  • Starting the process of selling Todd's car because you don't need a car for someone that is not driving
  • The installation of PERMANENT safety bars in our bathroom
  • The modification of our downstairs to make it walker compatible and the modification of our bedroom to make the bed easier to get in and out of
  • Having to physically help him get in and out of the shower/tub even with proper aids
  • Managing my time better so that I can get to work on time but also know I've left him with breakfast and lunch which are all easily accessible
  • Biggest crying fit of all...I had to help him shave when he didn't want to use his electric razor

So, that's what transpired over the weekend. I went back to work yesterday (Monday) and now I feel like I can tackle the world on again! The weekends are to be about relaxing and rejuvenating, I think ours was a bit backwards. :) I DID manage to sneak out of the house for a few hours to go scrapbooking with the 'girls'... Todd's parents came by for a few hours and Ty was home when no one else was there. I did worry about him while I was out however I needed to get away for a few hours before someone found me in the middle of the interstate playing frogger (yes, being dramatic.)

So this weeks focus... Getting a Power of Attorney taken care of (I thought I already had this done but it wasn't), getting all his appts lined up this week and transportation (this is his 'busy' week) and now I am going back and forth with BCBS because they denied his hospital stay since it stated 'all services could have adequately been preformed on an outpatient basis.' Apparently Dr. Avery appealed this on Wednesday and was told it was taken care of... who knows... I have a call in to Dr. Avery's office and I'm in the process of getting all of the medical records sent to BCBS. If it's denied then Tennova (hospital) can be added to the payment plan that's already in place. What more can I do? The medical bills will get paid when they get paid :)

So enough about me and my dramatic weekend... Todd...

He started his new chemo on Friday... it is oral so that is super nice. Speech Therapy came by yesterday for their initial evaluation. She gave him some things to work on. I haven't heard back from OT or PT but I'm sure we will hear from them soon... He's moving slowing on his walker. He's riding a recumbent bike 1x per day to help with leg strength. His mouth sores are pretty much gone so that helps with dietary restraints. He's doing better on his falling however he still stumbles very easily. I think his speech might be a very smidge better depending on the time of the day (early better) and he says he still can barely see. Umm, blood sugar levels are doing better, not fabulous but better. I think that's the scoop...

We've had a TREMENDOUS amount of gifts come this week and I can't even keep up. Please know that they are so appreciated. I'm not good at Thank You cards however I've tried to email or call everyone. In addition... we've had so many people want to bring by food and bring by food. CURRENTLY... we are good on food so hang tight if you were thinking of bringing some. I'm still working on the last batch thats in the freezer. :)

I have also decided that it makes my life easier if I ask for help so.. if you have that crazy special skill, lol.. know you will be used. I'm using all my friend 'resources' to get things done. Thanks to you all as well...

We are STILL patiently waiting on the call from Duke. I know it's not going to be any new info so my hopes aren't up although I am still very interested in what she has to say. HOPING to hear something very soon!!!

That's all for now. Like I said... LOL.. I'm am back to being completely mentally stable so no need to worry. According to our counselor here at work, crying is completely normal so... I must be normal. :)

Please keep Todd's mom in your prayers.. her tumor levels have fallen a bit and keep my brain tumor friend Sheri and her family in your prayers. She keeps me half level headed each day and we share our stories... Amy keeps me fully level headed!

Shew.. a little long winded. Will update when I know more!

The Clan...


Thursday, February 2, 2012

Not quite as we had planned...

Well... title says it all...

Today just didn't go quite as we had planned. :( I got to the hospital around 6:40 after sleeping maybe 2-3 hours... Todd said he was up every 2 hours with nurses checking on him. The Dr came in right at 7. Sat down and spilled the beans... One of the cerebellum tumors has grown a smidge in addition to swelling. Since the area is so compact it is hard to tell whether his symptoms are from the growth or the swelling. I have overnighted the scan the scan to Duke and will anxiously await the phone call from Dr. D. (update again tomorrow)

So, there ya go... Todd is in really good spirits despite the day. He has been working on his leg exercises because he really wants to be up and walking on his own. I re-created downstairs so now he has what we call the 'Racetrack'. I've watched him several times making laps with his walker. I'm so proud of him...

I've been a nutty mess today. I've gone non-stop all day getting things 'done'. I tried to sit but then felt my eyes getting heavy and I knew I wasn't 'done' for the day so back up I went. I've done more than my fair share of crying. I've gone through all the emotions and crazy thoughts. You would think that I would have tougher skin by now since this isn't my first rodeo but needless to say, it never gets any easier!!!

Tomorrow is a new day... I go back to work tomorrow and will be rejuvenated and ready for the fight.

Keep us in your prayers. We still need all the prayers we can get!

Thanks all!

The Clan...

Wednesday, February 1, 2012

Nada, Zip, Zilch, Zero...

Yup... that's about what I learned today. After testing and A LOT of waiting... I came home to sleep and really had learned nothing.

I did learn that Todd needs to be exercising more than being a bum... exercising such as raising his legs or doing toe taps, not jogging... APPARENTLY he and the Dr had this conversation a few weeks ago and Todd opted not to really listen. HUM....

So the MRI was done at 2 and results weren't given to us by the time I had left at 8:30. HOWEVER the Dr. wasn't there so we had to wait anyways. I am now AGAIN anxiously awaiting the results.

So heres my positive thought... :) We were told if he has a good night then he will be released sometime tomorrow and results will be shared in the morning... If there was growth, they wouldn't be releasing him... Just my thoughts and wishful thinking. Until tomorrow....

It's wonderful he is coming home but don't forget that... he's still not able to walk unassisted and he still has almost complete blurred vision and he still has slurred/difficult speech and the list goes on and on.... We/He definitely has a lot of challenges when he comes home.

I say in just about every post about the support that surrounds the 3 of us...We've experienced it before and we definitely experienced it again yesterday and today. All my friends and neighbors just open their arms to us... and really swallow us whole. :) (not sure if that even makes sense but you get the drift)... I have my for sure go to people for certain things but I know that I can pick up the phone and call just about anyone. In fact... no need for me to call them, they are one step ahead of me. So... Thank you, thank you, thank you!!!!

Please continue to keep us in your prayers. I am going to hospital at 645 am in hopes of hearing the GREAT news!!!

Thanks all....

The Clan