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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!

Wednesday, August 29, 2012

Organ Donation and Update

I received a call last week from Tennessee Donor Services... apparently a few weeks ago, I called them. The lady asked if I was interested in knowing what happened to Todd's cornea's and retina's. I was definitely caught off guard and I needed a few minutes to digest the info. After processing for a few minutes, I called the lady back and told her that I definitely wanted to know about Todd's donation.

Well... Both cornea's and retina's were SUCCESSFULLY transplanted to someone. The first person was an 83 yo grandparent and the other was a 33 yo man. Both live here in East Tennessee. That's all I know but I am very thankful that I was able to make that decision to give the 'gift of sight' to someone on behalf of Todd.

I had never really thought too much about organ donation but after this I think it is a wonderful idea... I know it's not for everyone but please consider because it truly is important in helping out others. :)  Here's the TN link.

As far as whats going on with the Bloomfields.... Ty started 7th grade almost 3 weeks ago and the routine has been a huge blessing to us. He's still actively in Boy Scouts and playing guitar. Since it's just me and all the running around, I have limited his activities to those 2 things. Other than that, all is good. I've learned that in 7th grade the girls are starting to get a little boy crazy and Tyler has numerous texts throughout the night. He's not quite 'there' yet but I know it's right around the corner.

Me... I'm juggling life. I am learning to appreciate those who are single mothers who work full time. It's super hard. In addition to that, I am struggling with the daily household stuff. I never thought our house was big but it's alot of work for 1. It's ok though, I have no plans to go anywhere. I make a goal of cleaning 'something' every day. :) I'm thankful for my friends who are having me over for dinner and entertaining me. Ty's been going to both Knoxville grandparents 1x a month for the weekend. During this time, I'm either going out with friends or doing stuff around the house... My mom told me last night how much she appreciates having him because they see him more now than they every did and he's so much fun now that he's grown up. I know the Bloomfield's feel the same way... Ty and I are truly blessed to have both sets of parents around who want to be active in his life!

We have an action packed fall planned. I have purchased season UT tickets and we have a trip for fall break planned. Between boy scout camping, UT football and just living life, we will stay busy!!! This Friday we are off to Atlanta to see UT play and then on Saturday we are doing Six Flags (weather pending).

I think that's the scoop... I will post when I can give another Bloomfield update. Continued thanks to those who have supported us. I'm learning that I can't please everyone so instead I will focus on pleasing me and Ty!


Wednesday, August 1, 2012

So... Yes, its been along time!

I've started to blog week after week and I just push it off to the side. I feel like I don't really have a whole lot to say but Ty and I have been so busy this summer.

We are learning to live a new life... life without Todd has definitely been difficult. It's what we both knew and know. I struggle with the day to day operations as for the last few months, we had so much help and my household was busy. I struggle with 'planning' as our life has been planned down to the hours over the last few months. I struggle with figuring this crazy life out...

Ty and I took a few weeks to 'chill' and just go with the flow. We stop and 'see' Todd a few times a week (when we are home) and we are always telling jokes and crazy stories. I struggled on the 4th of July because it is one of my favorite holiday's and Todd would let me 'act a fool' by making sure we had party favors, dressed alike and bounced around the neighborhood. I am blessed to say that the neighbors filled in very well... We had an excellent 4th of July!

Afterwards, Ty and I went on our annual beach trip with Amy and her mom, Sandy. I love this trip and I try not to pass on it... We are so thankful that they like us enough to invite us year after year. I went down with the mindset of relaxing and thinking... I did just that. I rocked of the back porch many afternoon/nights, watched the sunrise/sunset and sat for hours with my feet in the water. I think I had an AHH HAA moment. Todd wouldn't want us to be moping around crying as he would tell me over and over during the last few months. He would want us to be happy and moving forward...

With that being said, I came home and told Ty that we were moving forward...what does that mean?? Who really knows, lol... I told him that we would never forget the past and memories and we would NEVER forget Todd but that we were going to search for happiness. Happiness for all... I went by the cemetery that next day and I told Todd about my new 'plan.' I talked to him for about 5 min and while there a older lady came by and saw me crying... We exchanged a hello and then started to talk (yes, I make friends in a cemetery) She asked if I was here to see a parent and I told her it was my husband. She said, no one should ever lose a husband/wife at a young age.. which I agreed. She then told me to make the best I could out of my life. I'm not sure if it was a crazy sign or not but I truly felt like God had placed her there to confirm my new 'plan.'

Our new 'plan'... we are making new memories and new traditions. We are remembering Todd for all that he did for us and all the fun we had. No one can take that away from us but we are now on a mission to make new... new everything!

I have continued to work and Ty has been a summer rug rat. We have been very fortunate to have 'kid' sitter who watches over Ty 3 days a week. We love Luke... The 2 of them are 2 peas in a pod. They both could play video games all day and night! Ty also starts school next week in which I NEED very badly. We are so out of routine and I need structure.

I am asked every day how Ty and I are doing.... My answer: We are doing well and making adjustments.  Every day is a new day. No major decisions and we are just going with the flow...

Sorry it has taken so long but THANKS to everyone who has supported the Bloomfields over the last year! Love ya all...

The Clan...


Sunday, May 20, 2012

The Last Days

I've started this post a thousand times in my head... I just didn't have the energy or emotional strength to write it.

Todd woke up on Saturday acting a bit 'off.' I texted Greg (brother) to make sure he was going to be home most of the day (just in case of emergency) and I also texted Bonnie. I can't really remember today why he was 'off' but something just wasn't right. All the family came over to visit.

That evening I had a visit with my neighbors who strongly encouraged me to have a 'talk' with Ty. I waited until he was settled and I asked if he knew what was going on... He said he knew daddy was 'slipping' and I asked what that really meant in his head. He was still convinced that Todd was going to be getting better soon. I told him that Daddy was dying.. I didn't know when but that the outlook on his cancer wasn't good. He cried and cried in my arms as this was a pure shock to him... Nothing like telling your child that his father is dying..sheesh! After some time alone, Ty came down to be with us. Todd was already sleeping. We curled up in my bed and watched some tv... He asked if he could sleep on the couch to be closer to us. (remember, we were all 'living' downstairs).  We said some extra special prayers and off to sleep we went.

Right at 4am, I heard something going on with Todd. I turned the light on and I found him vomiting and not able to turn his head... I quickly tried to clear his mouth so he wouldn't choke. I'm pretty sure I went into panic mode. I raised the bed in hopes he wouldn't vomit again but sure enough he did. I started to call Greg, I started to call 911, I started to call whoever... I tell you, I didn't know what to do. I actually called our neighbor/nurse friend Kim because she's a nurse and should know what to do... I remember saying to her 'I think I need you... please hurry.' She was to the house by 4:10 and she was so calm, cool and collected. She tried to talk to Todd and he told her that his head was really hurting but he wasn't ready to go to the hospital. She was gently stroking the top of his head and said 'I really think we need to go...he said OK.' I called 911 and the ambulance came. I say he was still responsive at this time because he told the ambulance that he wanted to go to Tennova on Broadway.  Our family friend, Renee, came and swept a dazed and confused Tyler away....

Kim and I went to the hospital and she stayed with me until things were settled. I waited to 'know' something before sending the family into panic mode. Kim was by Todd's side the entire time making sure he was comfortable. She helped me decipher all the medical lingo and she made me realize that this was possibly 'the end.' The Drs asked if I had all my paperwork in order and I remember looking at Kim and her saying 'it's ok, calm down.'  Todd was now on a nausea drip and morphine. I know he heard us talking because when we asked him a few questions, he would smile. By 5:45am, my parents arrived (told them to wait but they couldn't wait by phone) and Janice our neighbor had brought me sweet tea. :)  All of us just sat around waiting to find out what was next...

I called Bonnie and Ted and told them what was going on and they called Greg... Todd was in a room by 8:30/9am and he was surrounded by all of us yapping. By this point I truly believe that Todd was unresponsive. The rattling in his chest was just starting and the dr's were talking to me about getting him into hospice. So... I was off to making hospice plans. I also ran home to take a shower, eat and bring Tyler back. Ty stayed about an hour and then the Rupekas picked him up for an afternoon of celebrating Mothers Day with their family. By afternoon we had lots of visitors showing their love and support. I kept writing Todd's unresponsiveness to the morphine but I now know he had slipped into a coma. The rattling in his chest was getting a lot worse... I think they call it chain stokes breathing. We are now going on to late afternoon and I forgot a change of clothes. I ran home again, asked Ty if he wanted to come back up and his response was 'is daddy awake?' I said 'no' and he said 'pick me up after school tomorrow and I will come up.' By the time I got back to the hospital, Bonnie told me that the nurse told her that she would be surprised if he made it through the night. WHAT????? Ok breathe...

Everyone left and Amy came to hang out with me. Once she heard that things weren't going well, she made plans to stay the night. I told the nurses that I wanted to be prepared and please don't sugar coat it. She said 'ok.'  I had her take his vitals every 45 mins and she told me the same thing.. it could be tonight or it could go on for days. By 730pm, I had a roomful of my friends and we just gabbed to pass the time. My one friend, Alicia asked if she could pray before she left and I don't remember what she said but I remember crying and thinking to myself how blessed I was to have friends who are there no matter what...remember, it was Mothers Day and they took the time to come be with us. There left was Amy and Lora and I had multiple texts come through checking on Todd. I had 2 texts that came back to back and they said to have the 'it's ok talk' with Todd. I sat there for a second thinking there was no way I could do it and then I thought I needed to do it. I excused the girls and I sat with Todd on the bed... I held his hand and told him everything I have told him in the past. Tyler and I loved him, we were thankful for everything he provided for us, we were thankful for him loving us, we were going to be ok and that it was ok to let go... Not sure what else I said... I know it was the hardest talk I have ever had to say. I kissed and hugged him and then went and cried in the bathroom. This was at 11pm. Nurse came in and said his blood pressure was 67/30 and he was running a temp of 103. She said his body looked like it was modeling-blood moving from body to keep heart pumping.

It was time for Lora to leave. I walked her down to her car and came back up to get ready for bed... Amy and I shuffled around and got half way settled. The nurse came back in and tried to get his blood pressure again...there was none. I looked at Amy and nurse and he said 'I believe he just passed'... I sat there for a second in disbelief and started to cry... Amy hugged me and I went and sat by Todd.  I told him again that Ty and I loved him and we would miss him tremendously. This was 11:45pm.

I called Renee Rupeka who had Tyler and told her to bring him up... I needed him to be here before the family got here. My parents and the Bloomfields were next.... Waiting for Tyler to come was the longest 30 min. I waited for him at the elevator and he looked puzzled when he saw me crying. I told him Daddy had died... He had a full breakdown, as expected. I walked with him back to the room where he fell to pieces. He hugged and kissed Todd and told him how much he loved him. He didn't leave his side for the next 3 hours. The Pastors arrived and so did all the family. In the meantime, Tennessee Donor Services called and asked about cornea donation. She explained there were 2 people in the East Tennessee area that would benefit from his corneas... She told me that it helps people with Macular Degeneration and I immediately thought of Todd's good buddy Jay! Yes it took me a few minutes to make that decision but after hearing that I knew it would be a good thing. Family and friends reminded me that even if his eyes aren't perfect they still give HOPE to someone else. Now I wish I knew who received them!

Ty and I took 10 mins after the room cleared out and we said goodbye. I will never forget that moment... I will never forget the look on my sons face... I will never forget walking out of that room.

On Wednesday before Todd died, Amiee Gilleran from Blink by Aimme came by and took our photos. I truly treasure this last family picture and I thank Aimee with all my heart!!!

I will post more later... I still can't adequately thank all that were involved in that day! The love and support that was shown was amazing.

The Clan...

Friday, May 4, 2012

Wrapping up another week...

After a dreadful last week, this week was pretty good...

The week started with a visit from 3 'big wigs' from Todd's old employer-VF Corporation. The flew in from PA just to see Todd... we were more than moved that they thought highly enough of Todd to make the special trip. They stood around Todd's bed and told stories of the past and talked to him about the last year and the last few weeks. Todd got emotional several times which in turn made me cry... This was one of the first times that Todd showed any type of emotion regarding the 'situation.' In addition, they presented us with a donation check. WOW... it was so gracious. Apparently, all the outlet stores did a money drive collection for a few weeks and then the corporate office did a sample sale. I can't thank them enough for taking the time to come and visit AND that someone thought that highly of Todd to do a money drive! VF has been more than gracious to Todd and our family over the last 13 years... I appreciate the support and love they have consistently shown!

Also on Monday, we had a visit from one of the Pastors from Fountain City United Methodist Church... She stopped by with a picture frame that had been signed by everyone in the Journey service who said they would add us to their prayers... It was neat because there were so many people that knew us as a family, me, Tyler or knew who the Bloomfields were. A little back story on this church for us. Ty and I started to go. Todd joined us a few times. We visited other churches... then we decided to go back and give FCUMC another try. About that time, Todd was diagnosed with another tumor and we put going to church on HOLD. I was happy to hear that FCUMC reached out to us! Since Todd's been sick, Bonnie and Ted's pastor has been coming by 1x per week. Thanks Pastor Ed... We love that you all have taken us on too! Lots of love given to us on Monday.

Tuesday rolled around and I went to Greeneville to the main campus. While I was there I received a call that an Edible Arrangement was being delivered... Woohoo. I've seen them before but have never been given one. I started talking with my coworkers from up there and no one said anything... A few hours later, I was given 4 cards signed by most departments, 3 vases of beautiful flowers freshly cut from a yard (yes, vases will be given back, Kathy) and they were the group that sent the Edible Arrangement. Its great to have the love and support of all my coworkers!

Wednesday we enjoyed dinner with family and Thursday was a quiet day... I did receive more flowers and a card/gift from a previous coworker. Lots of stuff has been done around the house by others and we have truly been blessed with lots of love and support this week! I need you to know that we appreciate it!!!

As far as Todd goes, I think he came down with my cold so we got him on an antibiotic and he seems to be feeling better. He tells me he feels "OK" but he says he has electric shock feelings in his hands and legs...not sure what that is from. He is now telling me he feels woozy or loopy.  I can tell when he is off however he is still trucking along. :) I called on his chemo and it is to be delivered on Monday. He still gets up during the night at least 3 times so the nights are long... I am very thankful that he has not shown ANY aggression over the last few days/weeks. He seems to hallucinate after a long action packed day and when the day settles down. My theory is that he is stimulated throughout the day and when it all settles, his mind is still moving... My theory only, LOL

I won't disagree that I feel like I need a few minutes to myself... however I quickly remind myself to cherish every moment we have right now! If you haven't loved on your loved ones today then I highly recommend it. Tomorrow is never promised!!!

I calculated that I have been using volunteers for 12 weeks now... I/we appreciate everyone who helps with Todd during the day and helps me and Ty. I say it over and over but without you all, I am not sure where we would be today. Thanks to everyone who is helping to keep us afloat!!!

That's it for now... I will update more next week or when I know something else. Keep praying... we need it!


The Clan....




Thursday, April 26, 2012

Another Sad Update

I'm all over the place with emotions so buckle in for a long drama filled post. I came down with the 'bug' on Sunday night and I thought it was just a cold but I wound up with a fever and all the junk that comes with it... With that being said, I haven't felt the best and emotionally I feel like I have been hit with a baseball bat!

Scan was Wednesday.. we got to the hospital where we were seeing Tiffany/Dr. Avery, doing blood work and having a scan. As usual, Todd was super uncomfortable in the wheelchair and the nurses found him a recliner while he was waiting for his scan. I can't say enough about the infusion nurses and Dr. Avery's team as they have ALWAYS gone way above to make sure "ERIC" is taken care of. (Eric is his first name.)  Almost all his veins are shot so they poked and prodded to find a place to put in an IV and to draw blood... after numerous pokes, they finally found a spot. Blood work drawn and off for the MRI.

I ran out and grabbed a bite with Amy... when I got back to hospital, Tiffany chimed me to tell me she had my husband. I joined them and Tiffany didn't waste any time. She looked at me with that 'look,' shook her head, put her hand on my knee and started to tell us the MRI results. She explained that the paper works showed 'significant growth' in both the cerebellum and brain stem and that the 4th ventricle was in jeopardy (not sure that's what she said.)  She held his hand and told him she wasn't going to give up and that we would wait to talk to Duke.... She tried to talk to him about talking to us about his wishes, filling out a DNR and talking to us. He got weepy and said OK but that was really it. Meanwhile, I can barely breathe...I've heard much of this before but yesterday was so real and I knew we are truly running out of options. Dr. Avery came by to check Todd out and he gave me a little hug... Ultimately, you know that it is part of their job but I'm sure it's a sucky part! We stuck around for a bit longer to talk about a few other things and off we went. Again... Dr. Avery and his team have been more than wonderful and compassionate. The hugs and pats from the nurses when we left were more than appreciated! From there I overnighted the disk to Duke.

We got home where I fell to pieces again and Todd yelled at me... He said "I'm not dying and when I am, I will let you know-that's when you can cry." I called the moms and settled down. I knew the rest of the week wasn't going to be easy.

I slept probably 3-4 hours Wednesday night... I couldn't sleep due to coughing and when I did finally fall asleep, Todd woke me up. He's pretty restless at night and some nights, he's up 3-4 times. Sometimes we are even changing sheets in the middle of the night... so needless to say, it's not a quick and easy 3-4 times. I was pretty hateful at work today however they continue to come back to my office so they must still love me. :) I snapped a few times over the most ridiculous stuff however I finally realized that when I wasn't being ugly, I was on the verge of a full breakdown. I cried a few times over the 'just because'....which really isn't me.  I cried on my way home, I was hateful to Greg, I was hateful coworkers... I was just plain mad at the world. (I think I am a bit sensitive... lol)

In the midst of all of that commotion, I missed a call from Dr. D at Duke. I finally got ahold of her where she confirmed what Tiffany had told us... she even told us the uglier side of it! According to Dr. D, his brain is virtually consumed...The cerebellum is filled, the brainstem is now filled and there is a new tumor in the midbrain. All of them are aggressively moving. In addition, she said that the 4th is virtually closed. Last scan it was 1/3 or 1/4 closed.... Once it becomes closed, the fluid will not be able to leave the brain. Dr. D said we were at an 'any' week time frame now and things could go pretty fast once we got to that point. She again went over all the things to look for and told me she would talk to Tiffany tomorrow. She knows that Todd is not mentally ready to give us so she is going to give him a low does chemo pill... We discussed hospice and the next steps. She recommended skilled nursing to help him gain strength and fight more vs. the rehab center. All and all, she said she would support whatever decision we went with. I came back in tears and tried to talk to Todd... he told me he didn't want to know what was said but he wanted to know if Dr. D was giving up on him. I told him NO and he said OK... he went on as if life was going to be ok.... Again, I've cried all night. Tyler disappeared like the plague and when I tried to talk to him he said he was tired and needed to go to bed. GREAT, both boys are in lala land!

Not sure when reality is suppose to hit the Bloomfield house... I think I am realistic because I have to be. When it's all said and done, I am left to clean up the pieces of a broken me and broken child. I am not sure what is next but to live each day the best we can and provide lots of love and support to everyone. I don't wish watching a loved one die of cancer to anyone. When I grew up and visioned life, this definitely isn't what I dreamed about!!! I've been put in this situation for a reason and someday it will be made clear to me... right now I'm just pretty darn mad about all of it!

So... with all that being said... I'm close to being mentally drained and I'm not a very pleasant person these days. If it weren't for Amy who sets me straight, I would be in a different place. She's been a great sounding board and in addition she has learned to be a caretaker for Todd. I hope everyone has an AMY in their life. I can't leave out work... They deal with me 9 hours a day... my supervisor and coworkers have been flexible and super compassionate. I am so tired of talking about 'my' problems. I can't wait to work on solving theirs... Love you guys!

Well... if you made it to the end then you have gotten the complete story... I will update when I know more. Continue to pray for us... pray for comfort and peace... pray for Tyler... pray for me... pray for everyone involved..

Continued Thanks to my helpers... I feel like we have become a burden on you all but I truly appreciate everyone who has been helping!

The Clan...

Tuesday, April 24, 2012

Big day tomorrow... Scan

Well tomorrow is a big day around the Bloomfield house... the SCAN. I am hopeful but very realistic as to what I will probably hear on Friday. Please say extra prayers for us tomorrow as his scan is at 12. In addition, we will see our favorite oncology group. (Seriously, I think we talk to them more so then some of our family members.)

This week has been pretty low keyed... which is what I really like. His aggression has been nonexistent and he's been pretty with it. The other night after bed, he told a funny story of him and his brother Greg. Apparently Greg was in the house and causing trouble... it was so funny that even Todd was laughing but in all seriousness, he thought Greg was in the house. I can handle the funny hallucinations its the out of character mean ones that scare me.

We are learning to appreciate the super small things in life and I challenge all of you to look around... I am sure there is something you take for granted or I am sure that you don't take 30 seconds to tell someone Thank you or I love you... I've said it before, I am no longer a wife... I am a caretaker. We are a broken family trying to survive and I'm doing the best that I know how to make it through the day without cracking---I don't have time to cry a pity party because I am too busy juggling everything that needs to get done. I'm sure the day will come when I can have a pity party but unfortunately today isn't the day so I will put my big girl pants on and mosey along. :)  After all that blah blah blah, I meant to tell you that I look forward to dinner with Todd every night. I usually make one plate, climb into bed with him and we share a meal. This is a great time for me to tell him about my day and for him to listen to me ramble, like he has done for the past 20 years (actually this May will be 21 years.) See... it's the little things.

On a brighter note, the people from Patricia Neal rehab center called yesterday and they are waiting on insurance approval. Once that is done he will be able to transition to their full time rehab facility. He will receive OT, PT and speech. Like I said in a previous post, PT thinks he can at least stand on his legs unassisted with more consistent work. Big goal is to walk with walker. Yes a lofty goal but he seems to be willing to fight as long as these darn brain tumors allow!

No long drawn out post today... Just lots of prayers for us tomorrow! Please pass the blog along to everyone you know.

I will post when I know results of the scan.

Thanks to everyone who has been helping us!!! We couldn't do it with out you all!

The Clan

Friday, April 20, 2012

Another week...

Well... We have made it though another week. The end of last week and the beginning of this week was somewhat of a roller coaster.

Last week Todd was hallucinating way more than normal and he was having very aggressive behavior at night. At first it was directed at Tyler and towards the later of the week, it was towards me to. The final straw for me was last Thursday night when all 3 of us were watching tv in bed and out of the blue, Todd punched Ty 3 times on the back. I quickly stopped him and made sure Ty was OK... Got Ty out of the room and tried to talk to Todd, realizing I'm not really sure what he understands in that mindset. While I was helping him get ready for bed, he punched me. I was furious over the situation but truly understood that he wasn't in his right mind. Ty and I went and slept on the couch and in the morning he barely remembered it. I say that night was my final straw because for a week or so Todd has been biting, hitting or verbally being ugly. My heart would break for Ty when I would hear Todd say things to Ty. I would just reassure Ty that Todd didn't mean it and its all because of his brain not working right. In addition, we knew when Todd would get wonky because he would start talking in a crazy voice.. It was just so bizarre.

I called my trusty NP, Tiffany, who talked to me about realitiy and that if things didn't stop we would have to remove him from the home, for our safety and sanity. She mentioned the words Residential Hospice... ick... I was realistic that it was potentially going down that path. We gave him an anti-psychotic prescription and off we went. Well, the prescription turned him into a complete zombie. He could barely stay awake and form sentences. After a few days of playing with the dose and talking to Duke, we pulled him from it. I am super happy to say that he has been on 'good behavior' all week and we have had NO aggressive outbreaks since Sunday. In addition to no aggression, he's been pretty 'normal' on the stories he is telling. Fingers crossed...
The brain is truly a funny thing!

So fast forward... Our Physical Therapist talked to me on Wednesday about the fact that he's gained at least 50% more strength in his legs and with continued work, he might be able to stand on his own, help transfer better or even walk assisted with a walker. Somehow I started talking to her about how I wished we could see her M-F and then the topic of a rehabilitation center came up. Given his terminal diagnosis, we weren't sure if this was even an option. As of Friday afternoon, we are still waiting to hear of options for facilities he might be able to go to... We are hoping for a facility that will be able to provide around the clock care and help him in OT, PT and speech. This is encouraging for Todd in the thought he might be able to assist in transferring, walking, etc... I would much rather him die fighting and trying then to give up and have no HOPE. To be continued...

So you see that last week we were talking about residential hospice and this week we are talking about rehab... no wonder sometimes my mind is all over the place!

I am very realistic about what might come but I will fight with him as long as he is God willing!

So, keep us in your prayers for continued success in his mobility and that he stays away from being wonky and aggressive... He has a scan on next Wednesday and I hope to hear the results by Friday... Busy busy week

A quick shout out to a few people..
  • Paul and Helen Cramer for the gift they sent last week
  • Jenny Wlas for the care package
  • The Armstrongs for the gift card
  • Ina Stanland and Pastor Ed who send a card every week

Not sure what we would do without the continued support and prayers from our family, friends and complete strangers!

Thanks all...

The Clan

Monday, April 9, 2012

Wow... a few days behind

So I didn't realize that I was over a week behind on updating... Sorry. Prepare for a long winded post. :)

Todd is still in the same ole same ole situation... sucky! This week was week 4 of his CCNU treatment and there has been no major decline but at the same time, there has been no improvements.

Today we celebrate his 40th Birthday... I had big plans in my head a few months ago. We were originally going to take an Adults only cruise then I had an opportunity to go to Las Vegas and was going to incorporate the big day into the trip... All that was brought to a halt. :( So instead we had a family day on Sunday and I am having our neighbors over tonight for cake. Nothing thrilling and grand however it will be spend with those we love!

Sunday for Easter, Ty and I managed to sneak out of the house for church... We went to the church where we began going until Todd's health declined. We never made a commitment or decided that this church was the one. The Pastor did the traditional Easter message and at the end said the word HOPE... Saying to never give up Hope. I felt like she was talking to me. I left there with a heavy and happy heart. Ty knew I was sad and at one point reached over and held my hand..we squeezed each others, smiled and carried on. When the service was over, the Pastor was greeting everyone at the door and she stopped and hugged me. Not sure what she knows or doesn't know but I really appreciated the gesture.

In addition to church, we had a family dinner. Everyone that we call family came by for a cookout and to celebrate the April B-days. It was nice to have everyone together and it was nice to have some help with Todd. I think he enjoyed the family being there...

Here are some pics of the day and forgive me that I don't have Ty with Todd's parents (he was out playing in the neighborhood.)



As you can see, I am going in reverse but I am getting to Todd's doctor appointment next. :)

On Wednesday, Todd was scheduled for his Avastin and to see Tiffany. I now have to juggle how we get him places since I struggle transferring him in and out of the car. I found a place here in Knoxville that I can rent a handicap accessible van. I thought I would try this out... It was a bit pricey however it was worth its weight in gold! I got Todd into the big wheel chair, hit the button, wheeled him up into the van and strapped him in. Off to the Dr we went...

Once we got to the hospital, things seemed to go downhill pretty quick, relativity speaking . I went back with him to get his blood work done and they couldn't find a vein... She prodded for a few mins and finally found a vein in one of his finger/knuckles area-ouch. I then took him to the waiting area to wait for his infusion. While there I had to give them my new insurance info and go through that rig-a-ma-roo... Todd decided he had to go to the bathroom while waiting and I knew that wasn't going to go well... I took him into the bathroom where he couldn't get his legs underneath him and he started to slip from me... I called for help-no one was around, looked for phone to call Tiffany-phone had fallen from chair and across the floor. Todd and I started to fuss at each other as I was close to panic and then I started calling for help again. Finally, a few of the infusion nurses came to my rescue... I was pissed and hurt all in one because I can't believe this is what our lives have come to. One of the infusion nurses who has been treating Todd from the beginning came and hugged me and told me how badly it hurts her every time she sees Todd. I pretty much lost it from there... I grabbed a soda, regained my composure and went outside to sit on a bench. While on the bench, I cried...

No need to keep on crying... Tiffany, the NP, summons me to her office where I learned 2 things: 1. didn't have new insurance approval so they were working on that and 2. his blood pressure was so high that they couldn't start the infusion (well we just had a bathroom episode so..) So a waiting we will go....Finally after 2 hours, I was called back to where Todd was so I could sit in the infusion room with him. Tiffany came back as she is apparently a IV ninja and she tried to find a vein for them to start. After 30 min and 2 nurses, they opted to call it quits and forgo the Avastin for the day.

In addition to his blood pressure being high, his other counts were a bit low and we were told to go home... I felt like I had been run over. All is well now and we will try things again on another day.

Avastin has been officially called off for the time being until we see the next scan which is on April 26.

So I think you all are all caught up on our lives. Ty is doing ok and still continuing to be a big help around the house. I continue to sing praises about all the people who are helping us... I truly worry what happens when the day comes that I am trying to do this all by myself! One day reality will hit and it sure won't be fun.

I think we have been a full 6 weeks now where Todd needs consistent 'watching' and is fully bed bound. I have no choice but to continue to stay strong and composed for my family...even when I get sad over the silly stuff. It's amazing how much we take for granted in life... when you have a crappy day, who is the first person you call-your spouse, when you have something funny to say, who do you call-your spouse, when you have a parenting issue, who do you call-your spouse. Who do I call? All of you all now... I would really like for life to go back to 'normal,' whatever that may be!

Ohhh, didn't mean to go on my ramble above.

Here's my prayer list for the week....

Please continue to pray for my friend Sheri Slusser as her and her family are struggling to figure out what is going on with Josh. Last I heard, they think his cancer has spread to his spinal fluid and he might have meningitis. They have an almost 3 year old. She's been a GREAT cancer texting partner with me. We have never met but I feel like we could conquer the world together!

In addition, a long time family friend of Todd, Lynsey Newton lost her husband last week to cancer. I texted with her hours before and although she knew the end was near and she had made peace with it, it still is never easy. Her and Tim had a 5 year old daughter... they were in their early 30's.

Lastly.. a prayer for a high school friend who prays for us consistently... Jenna Sanders. I have linked her blog here. Her brother in law was killed on Easter Sunday in a freak accident.

No one ever said life was easy or given to us... Hug those around you... Tell those around you that you love them.. Smile at strangers. :)

As always, Thanks for everything that you all have been giving/doing for us. We appreciate every ounce!

Keep us in your prayers over the next few weeks!

Food site... http://mealbaby.com/viewregistry/13378825

The Clan...

Tuesday, March 27, 2012

Happy to post...

Nothing is really new at our house. Todd is still pretty much bed confined and we should be getting a new hospital bed this week... The new one will be a better mattress and have better controls. In addition, PT ordered him a hoyer lift and a sliding board. Hopefully this will help ALL of us in transferring.

I think all of our volunteers are doing a fabulous job and we GREATLY appreciate them. The 'sitters' have more than kept us afloat. I know its not a glorious job but it is so important to us... I am comfortable leaving him for 30 mins or so but really no much longer so it makes it difficult to do any type of errands. I say this over and over how fortunate we are for our neighbors and Greg living down the street-they are the first ones to run over in a last minute pinch. :)

I set the meal website up... Here it is again: http://mealbaby.com/viewregistry/13378825. You will have to set up a login but it is so easy to use. I'm loving it!!! In addition, I've had people call last minute as ask to bring fast food... Everything has been perfect and I can't wait to eat the delicious food!!! Tonight is Pot Pie from Linda Noyes...yummo!

I am still thanking people everyday for their kindness and generosity... We receive cards, gifts and nice gestures everyday! People have truly come out of the woodwork... This weeks HUGE Thank you goes to my neighbor Angie and George Moore who George pressured washed the house and Angie is doing our garden which is BIG job!! Thanks guys!!!

I can ramble on all day long so since nothing is new, I will end. Keep the prayers coming. I will post when I know more. :)

The Clan...

Monday, March 19, 2012

A few Thank You's

Hey guys!!!

Nothing really new around the Bloomfield house, just continuing to 'truck' along. I have a few Thank you's that I don't have email info on so I thought I would do a quick shout out now for last weeks cards/gifts.
  • Ray Puente with VFC... I've emailed what I thought was his email addy but it keeps bouncing. :(
  • Souderton, PA store... Not sure who the contact person is now.
  • The Hammonds
  • Aunt Bea
  • The Gap Group
  • The "Mystery" card person... humm... who are you??
  • Danielle Matthews and her mom... (not sure if there was anyone else involved in the gift)
  • April Blair, Amy, Sandy Meyer and Angela Lemmons for delish dinners last week.

I am so sure that I have left someone off... I try to keep a running list of who to Thank but if you know me well enough, my lists are up in my 'head.' I need to get more organized. :)

Quick update: Nothing new, hospital bed has made a HUGE difference. He is still a bit loopy but all an all nothing has changed. Currently we are each laying in our beds while he watches or attempts to watch UT basketball. Ty is playing outside as it is spring break and it feels like summer!

Off to enjoy a few more minutes of 'me' time... Thanks to everyone who is supporting us!!

The Clan

Friday, March 16, 2012

Food Website

At the request of many and to keep me straight on who is bringing food, I have set up a Food Website. The super cool part is that it allows you to do gift certificates for food as well.

Please don't hesitate to ask if we 'like' something.. we are definitely picky eaters. Call, text or email if you have any questions and THANKS!!!

NOTE: For privacy, you do have to create an account. It will just take a few minutes.

Here is our 'site': http://mealbaby.com/viewregistry/13378825

Extra Prayers Please

Todd's mom, Bonnie was taking to UT Medical Center today because she was having a hard time breathing... If you don't know, she has been battling liver and lung cancer for YEARS. Please shoot up a quick prayer for us. I just saw this from her FB post...
Bonnie still in ER due to pain in left rib area and pain when taking breath. Hospital ruling out fluid build up in lung sack possible pulmonary embolus or tumor growth pressing something, causing pain. Doing more test as chest X-ray did not show fluid in lung. CT scan not done as needed to be premedicated... Allergic to contrast dye. Had test in nuclear meds. And awaiting findings. Please keep us and our son Todd in your prayers. Ted, Kim, Tyler and other family members need prayers as well.

I will be sure to update when she is out and feeling better.

Thanks all..


Thursday, March 15, 2012

CCNU has finally been given

Even though we are grasping on straws at this point, I still hold hope that a miracle can occur... with that being said, I gave him his CCNU pills last night. With CCNU, you give a 'set' of pills on day 1 and they last 6 weeks... scary, I know. Nausea is the #1 issue with it so I armed us with our arsenal of nausea meds and off we went.

Since nausea was my main concern for the night, I didn't sleep well. Well, not sure I sleep well at all any more. He's like having a toddler in the house-when he moves, I wake to make sure all is ok... I was actually a bit paranoid that he would start throwing up and that I wouldn't know what to do. Since he's not mobile, I was afraid of 'what to do with' him.. In addition, I was scared of aspiration. I had the idea of calling an ambulance and honestly that thought scares me to death! Luckily, we made it through night #1... many more to go.

Last week we had a neighbor die.. His son is 15 and again, my heart aches for him and his family. This was pretty sudden although I think they 'knew' something was going on. Either way, a family has been left to put the puzzle back together. In light of this... I thought it would be a good opportunity to see where Ty's thoughts were. I hope and pray that you never have to have this type of conversation with your child!!! I cried, I tried to get Ty to show some emotion but he said he was OK (normal answer for Ty.) No need to go into what type of questions I asked him just know it was an ADULT conversation but it was one that I needed answers to for Ty's sake. He helped me in putting those pieces in the puzzle for him... (Make sense, LOL)

At this point, I am not sure I am telling you all anything new... I think we are surrounded by death in the community. Every corner I turn, I am hearing about someone who died or was killed... Please add the Kerley family in your prayers. Adam was my very best 'guy' friend in high school (yes, many years ago) and his brother, Tom was killed at work this week. He left behind a wife and children. Also, I've become friends with an old Bloomfield friend, Lynsey Parker Newton, her husband has been given less than 2 months to live and this week they have done his funeral planning along with hospice coming in... They have a 5 year old daughter. My heart aches for all but I realize that people's hearts are breaking for us. :( Guess it's easier to see the problems of others!!! On a side note, my brain tumor buddy, Sheri.. they have had a few good weeks. Josh is feeling good and seems to be tolerating his treatments well. :)

I think I am officially going to set up one of those food sign up web pages. 'Someone,' not sure who, recommended one in particular that looked great... now I just need to find it! Typically someone is delivering food M-Th and we are greeting you with open arms. My family is VERY picky though and if its on a site then our likes and dislikes will be noted!

As always... Thanks to everyone who has sent us gifts and cards!!! I also can't forget our wonderful friends and family who have helped the 3 of us over the past few weeks. Someone is making sure all of us are being tended to... Also, can't forget about our Greyhound friends who made sure the dogs were catered to :) and Tiffany, NP, who is on call with me 24 hrs a day... How many of you all have your NP's number to text whenever? Sometimes she's the best ear... Lastly, Ty's counselor at school has been a great behind the scenes person. She's making sure Ty is doing well at school and coping. Thanks Ms. Gresham!

I am finally going to post a picture of the 3 of us from the weekend at the Wilderness Lodge. As you can see, this is truly not the Todd that we know... It has taken me almost 2 weeks to look at the picture. The sad part of me kept thinking that this could be the last picture of the 3 of us.. Ok, I know Debbie Downer... so I won't go on... (If you go back a few posts, you can see a slideshow of pictures when life was 'normal.')



Someone told me this week "God doesnt promise there wont be storms,..but he promises there will be a rainbow on the other side!' So... I keep telling myself to be on the lookout for the rainbow... I'm looking!!!!

All and all, we are trucking along daily and we take each day one at a time. Thanks for all the kind words, prayers, support, calls and whatever else you all are doing!

Then Clan...

Tuesday, March 13, 2012

Everyday is a new day...

Seriously, every day is a new day and one to be Thankful for! I am however extremely tired and mentally drained. I've officially had the life sucked out of me...

Todd has continued to decline from day to day. My heart aches and breaks every time I think about him or see him. He is no longer the person that any of us knew. He is officially 100% dependent on someone. Whether it be eating, sitting up, changing, bathing or going to the bathroom. His speech is almost gone and it is now very difficult to understand what he is asking for or trying to say to us. He gets so frustrated at himself and us when trying to communicate.

I had a hospital bed delivered today... this will help him to be able to sit up and drink and/or eat without getting choked. In addition to all my other worries, I have to worry about him aspirating or getting pneumonia. The bed will also help with transferring him to and from wheelchair since it will raise and lower. All in all, I hope the bed will be a helpful addition to make things easier for all of us.

We are STILL waiting on the new chemo to arrive. The order was placed on the 6th, it show shipped on the 12th and now we are waiting on it to be delivered... He has officially has been off some kind of treatment, except Avastin, for 3 weeks. Hoping for it to be delivered soon just so Todd can have some peace.

Ty and I are still continuing to 'truck' along. He keeps on amazing me on what a strong and mature child he has become... yes, he sure is immature in many other ways! He is bending over backwards to spend time with him in the afternoons and helping him in almost anything he needs. I am so proud of him... I know he is hurting as well but he is doing an excellent job!

As always... I want to THANK all who have helped keep the Bloomfield's sane and in order. With out the help of all our family, friends, neighbors and coworkers, I might be in the loony bin.

I also can't keep up the the large amounts of gifts that we are receiving daily but here's a quick shout out to those I have on my 'mental' list.
  • Julie Knoefel, Amy Thomas, Mary White, Cody Allison, Joel Trussel, Polly Johnson, a mystery gift left on bed :) and I am sure I have left someone out. So sorry...
  • Food, food and more food. :) Yummy stuff from Mom's church group and dinners delivered by friends
  • Drivers for Tyler-Jen, Mark and Stephanie... Thanks!

Continue to pass the blog around for extra prayers.. I know there are miracles out there and I am hoping and praying that we can be one of them! I am amazed by everyone who has wrapped their arms around us with prayers... Thanks everyone.

Hopefully, good news next time as I am so tired of writing about the bad. :(

The Clan...

Tuesday, March 6, 2012

New Plan... again

Well...we have a new PLAN.

I will back up and tell you about the scan and Friday. He had a scan done on Friday and we met up at Dr. Avery's office to have a 'quick' read. The initial read was not good. We were told there was 'significant' growth. At the current time they were concerned that he would not make it through the week because he looked so bad! He was told not to eat before the scan, I fed him breakfast at 7:30 and he hadn't eaten and it was close to 5pm. In addition, he hadn't had any of his afternoon medicine and his feet were purple because he had been sitting in the wheel chair for a bit of time. So, not sure if this had anything to do with it....

We already had a weekend planned to go to the indoor water park, The Wilderness. I questioned whether or not we should go but we opted to continue on with the weekend. We went with our dear friends and I knew they would help if anything happened.

Fast forward... I spoke to Duke today and she confirmed the bad news. She said that the brain stem and the cerebellum tumors had both grown. She explained that his 4th ventricle is about 1/3 of the way 'squished' once that becomes fully closed then the brain fluid will not be able to move to and from the brain. She said this was her biggest concern and she called it hydrocephalus. The signs of hydrocephalus are headaches, memory loss, incontinence and balance issues. Since he is still willing and wanting to continue on, Dr. D is going to get him started on CCNU, another oral pill, and continue with Avastin. As of now, CCNU has been ordered and he will start it by the end of the week.

The next few weeks are pivotal..I hope and pray that his body can tolerate the chemo. We will just take each day, day by day and continue to FIGHT. I am so proud of Todd's willingness and fight. He's a true inspiration...he's happy, content and going with the flow.

Ty and I have been truckin along keeping life as normal as possible. He's actively doing scouts and playing the guitar. I had to knock out baseball since it was too much for me to commit to this season. The kid has been a huge trooper and I am so happy that he is a well rounded, adjusted child.

We've had great volunteers again last week along with several meal delivered. My mom's church group has put together coolers again and they are being delivered on Sunday... I'm sure it will last us for weeks. :)

If you are on the 'volunteer' list, I will be putting together next weeks schedule by Thursday. Todd's brother, Greg, has offered to stay with him more but while things are OK... I want him to work as long as he can because there might be a time when he really needs to be there more. I/We are so grateful for the volunteers as they are helping us get through the days! Also, Kim will be 'starting' with us next week and she will be a great addition to our Ship. :)

I've received so many more awesome gifts over the last week and I am having a hard time keeping up with everyone SO... if you have sent a card or gift, THANK YOU!!!

Keep praying! He's a fiery guy and not giving up so with prayers all things are possible!

Thanks all,

The Clan...

Thursday, March 1, 2012

One day at a time... Really hour by hour

The days and weeks keep getting tougher and tougher. We are truly getting by because of the graciousness of others...between food, gift cards, monetary donations and volunteers to 'watch' Todd while I'm at work.

In the past week, Todd has declined even more. He looks 'sick' and so miserable. He can only feed himself if it is a finger food and after a few bites he is tired. Someone ends up feeding him. :( If it is anything but finger foods, then he needs to be fed. He struggles to sit up for any amount of and fights with whomever when we tell him to sit up...he's not being ugly just a bit snarly. After a few minutes of sitting up, he resorts back down to the laying position. I'm a bit scared of aspiration pneumonia so I will continue to make him sit up... and I know others are doing the same in my absence. His skin is so bruised and sore... just the slightest touch and he says "Ouch." He can't go to the bathroom unassisted and he's had several accidents... Every now and then he can pee on his own safely. Lastly and no surprise, he's speech is still slurred, his vision comes and goes and his hand/eye is horrible. If you have tried to text him or email him, he is unable to respond. I typically check his phone every night for unanswered texts.

We really are a pitiful household right now... He's still confident that the next chemo will work and that there is nothing for me and Ty to worry about! Needless to say, I still worry. I am in full worry mode all day, every day. I am doing EVERYTHING I can to keep my family afloat and every now and then I feel like I am being judged. I know... I know... I know that this is me being a bit sensitive. So, I will not take any thing personal and keep on trucking along. :)

We've had some issues with the home health agency so I have been dealing with that mess the past few days... They decided to stop treatment due to his decline in health. I spoke with Tiffany, the NP and she thinks they need to keep doing 'something' so atrophy doesn't set in. I also had a lengthy conversation with her on his condition. She offered to have the scan moved to tomorrow which I took her up on it vs March 8th. She even told me that they would review the scan tomorrow afternoon and call be once they looked at it.... Whew, I don't have to wait over the weekend. I am realistic in what I am more than likely going to be told however it doesn't hurt to have a bit of HOPE!!!

Let's talk about Ty... I have been so impressed by him helping out. He has gone wayyyy above and beyond what any 11 year old should have to do. He helps with bathroom duties, getting food ready, giving insulin and anything else Todd or I need. I know this is way more than any 11 yr old should be doing however I am so proud of him for helping out!!! He is now seeing the counselor every week. She said he is starting to open up about his concerns and fears. I am thankful that he has an outlet. He did tell me this week that his biggest concern was if we were going to have to move if Todd wasn't with us... I reassured him that we will not have to move and if that was his biggest concern then he doesn't have to worry.

I think that's about the highlights of the last few days. I've had excellent volunteers this week- buddy Amy, neighbor buddy Jenn and Brian, both of our moms, brother Greg, Todd's friend Ray and neighbor buddy Kim.

Ohhh, speaking of Kim (I knew I wasn't done)... Kim is a neighbor buddy who happens to be an Oncology nurse. She has volunteered her time however I knew I needed to 'hire' someone for PT help. I offered it to her and asked her to do it AND allow me to pay her because if she only does volunteering, I would still be hiring someone. She has agreed and we will meet this weekend to discuss details. I am so excited because Todd will be pretty comfortable with her and I know she will truly do her best in taking care of him. She is going to do 12-15 hours a week so this will help me and all my volunteers out sooooo much! Thanks Kim.. it means so much to us! :)

I have a few special requests of extra prayers...
  • My Brain Tumor Buddy, Sheri... They were in and out of the ER last week 3 times. Josh was having horrible headaches and at times he was unable to form sentences. They've moved his meds around and he seems to be having a good rest of the week. As Sheri and I joke.. we have a few good days then BAM, something comes up. Brain Cancer is a funny beast
  • Prayers to the Edenfield Family-Tiffany and Ken are my friends/neighbors and Kara and her son Cooper are long lost Gap friends. Kens brother, Kara's ex-husband and Coopers father passed away last night. This was unexpected..Please say an extra prayer for them during this difficult time.

Thanks all... will update when I know more about the scan tomorrow night. I am sure I am leaving someone out but please know its not intentional.

The Clan


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

Tuesday, January 31, 2012

Change of Events...

So after 2 miserable days... they are admitting Todd tomorrow. What appeared for us to be heading on the right track quickly has taken a turn for the worse.

Yesterday he fell 2 times.. once while I was home and once while I was at work and today he has fallen. In addition he's having overall trouble. He can barely eat/swallow because of his mouth sores and they are worried about his nutrition levels. I've done my best to make healthy meals that he can eat but he is so limited. I went home today for lunch just to check on him and make him lunch. He's so pitiful. I worry about him at home, I worry about him falling and cracking his head open, I worry that he could have a seizure (not that he has but you never know)... you see the pattern, I am so wound tight right now.

After lunch, I called the nurses and we talked about the mouth sores. She asked me many more questions tho like... How cognitively alert is he, Is he hydrated, Is he getting enough nutrition, Is he too much for ME to handle right now (this one broke my heart), Is he in good spirits, etc... She said she would talk to Tiffany, the NP who I love... Tiffany called me back and told me that she wasn't sure and didn't want to scare me but I needed to "prepare for the worst" that the tumor has grown... So first thing in the morning he will have an MRI done and depending on how it comes back will depend on what they do. Needless to say, they aren't letting him go home until things look better.

Lots and lots of prayers needed... I have been so positive and strong but I'm close to a breakdown (not literally :) )

Until tomorrow....

The Clan

Sunday, January 29, 2012

Poor Ol Todd...

I really mean that... I think he has hit close to rock bottom. I know he's physically tired as well as mentally/emotionally!

Not a whole lot transpired over the past few days. We did add a few new members to our ship... PT (Physical Therapy) came by on Saturday to do an evaluation. From there we were told that PT, OT and Speech would each be coming to the home 2x per week for the next 6-8 weeks.

I had a hard time getting all the new medicine lined up but we are slowing getting it in... the new chemo should be delivered sometime next week. I just got the ritalin (which is NOT covered by insurance...better work) and I had to get more magic mouthwash, **remind me to come back to the mouth sores.

As far as Todd goes... he's nearly 99% bed/couch bound at this moment. He can't do any walking around unsupervised because he is definitely not good on his feet. PT has ordered him a walker with a seat for around the house (guess I will need to get crafty and decorate it for him in UT stuff) and I am picking up a wheelchair tomorrow for the visits to the dr and such. I now also have an emergency back up plan with neighbors and friends in case Todd slips or gets stuck while I am at work...I'm sure its not perfect however it will do for the time being. I have even debated working in 'shifts' and taking time off so that I can make sure he gets where he needs to be and can be settled for a few hours. I spent most of the morning making 'easy' grab foods for Todd so he won't starve while I'm gone. This way he won't use all his energy making something to eat.

I also picked up a shower/bath bench... it's pretty neat in the fact it goes over in the tub and over the side of it so he can sit on it outside of the tub and then slide into the tub (lol, make sense). We also installed a new shower head that has a long handle and cord so it makes it easier. Of course, he won't be doing this while no one is home!

I think that's the highlights... I don't see any lights yet at the end of the tunnel. In our 'ship' terms, we are floating in the big ocean with no motor and no signs of civilization. I know...eventually...we have to see an island, even if it's little. :)

A shout out to all the people who called to help AND helped this week and those who stopped by. I know Todd gets tired of looking at me all the time. :) For those who have put their name on the emergency list, you better be ready!!!

Keep us in your prayers...we truly need the extra prayers right now!!!

Wednesday, January 25, 2012

The Plan for the Plan

We officially have a plan for the plan... Or a new plan anyways! I am so thankful that we got moving on this because had major mobility issues today. When I picked him up this morning, he told me that he fell getting dressed and it took him 15 mins to be able to be able to gain enough strength to move. In addition, he could barely walk to the car and he needed wheelchair while we were at the hospital. I'm not sure how he went from decent to horrible in such a short time!!!

(Most of this is what I wrote about in last nights post)

Anyways, they did a gazillion tests on him today. Tested for pneumonia and blood clots and they came back negative. They agreed he looked pretty bad and they pondered on what really was going on. Based on Dr. D's recommendation, they are stopping the CPT11 because of the diarrhea issues. They are stopping the steroids in hopes of everything coming back to 'normal.' The are adding a new chemo (which apparently is old and harder to find, will be a pill) and they are putting him on the ritalin. All this is to start asap. He will continue on Avastin and his next treatment is on Friday.

They discussed admitting him today in order to get 'things' in check... I didn't quite know what the reasons were however Todd was pretty stern about not being admitted. After speaking to Dr. Avery, they decided not to admit him and to continue to monitor him. They truly believe all of his 'issues' are the result of major side effects from the steroids. She stated they can see where atrophy has affected his leg muscles, therefore not allowing him to walk very well.

PT, OT and speech therapy are being called in via home health to help him. He will wean off the steroids over the next 2 weeks and HOPEFULLY, we will see a turn around soon. I am now waiting to hear back from the office on the arrangements all these therapists and the sooner the better!

So I think that's the highlights... It was another long day but we survived.

My dear friend, Sherri and her hubby have an appointment at Duke with Dr. D at 9 in the morning... extra prayers for them tonight. Although my close friends here are a GREAT ear, she is an ear dealing with the same issues and we can truly relate to 'life.'

Give me a few more days and I will update... I know you all know but we really do appreciate those people who care enough to call, write, text or email. Even the littlest thoughts/actions go noticed. This sure is a tough battle to endure alone and we are very thankful for those around us. I can't wait until the day comes where I can help someone else out!!!

The Clan...

Tuesday, January 24, 2012

New Plan...

So everyone knows by now that I love PLANS... Todd has a new plan. After an update with DUKE with ALL the things that are wrong with Todd, I received a call from Dr. D to review all the "issues." You ask, what are the issues???
  • Swollen like a balloon.. from steroids
  • Speech and Vision still not good. He still is not driving and he is extremely hard to understand.
  • Unstable balance
  • No energy
  • Shortness of breath
  • Almost 90% bed/couch bound
Most of this has been on going however things have dramatically taken a turn for the worse within the past 2 weeks. On the plus side, the diarrhea is GONE and his blood sugar is pretty much under control.

I decided to do an update with Duke and instead of hearing from the Nurse, Michelle, I received a call from Dr. D. She was extremely concerned about what I was telling her. This is where the new PLAN comes into effect. We spoke for a bit and then she/I spoke to the Knox Drs.

They are going to wean him off of the steroids and move to Ritalin (yes, the ADHD meds) to help improve energy. Before that can be done, they are going to scan/xray his chest for the following: pneumonia and lung blood clot (because of the shortness of breath.)

They are going to change from CPT-11 to another chemo. This one will be oral... Changing because of the chances of diarrhea again.

Order PT, OT and Speech Therapy. Dr. D said that there is NO reason why he is not up and going... he is having severe side effects from the steroids and almost completely immobile. They are afraid he is losing muscles... add another issue to the list. :)

So.. after rambling.. this makes sense to me, probably not you... They are changing things up. Bottom line, Dr. D said he should be up and moving way more than what he is doing. She stated that the Steroids have really taken a toll on him in addition to the chemo. By changing all this around he will probably be better with the blood sugar levels (come off insulin) as well so this change hopefully will be GREAT.

In the convo.. she stated that the tumors were shrinking and I paused.. I was told STABLE. She said that in order for them to say 'shrinking' it would have to of shrunk at least 50%. His tumor has shrunk approx 15-20%. WOOHOO... this was good news.

We go tomorrow for the scans and the xray's, then an appt with Oncology. Both Duke and Knox Dr's have been fabulous in answering all my questions and keeping me sane. I've said in many instances "if this was your husband, what would you do?" and I feel confident in the advice they give me.

We've had a very rough past 2 weeks... I am so thankful that a little light came through the tunnel today to show me hope. I said several prayers over the last few days asking for some relief for Todd... Its not fair for him to suffer this much.

I've had several awesome gifts come this week. I want to thank everyone for all that you do/done! Any texts to Todd are greatly appreciated because I know he's getting lonely at home.

I'm sure I will know more tomorrow... and will post again!

Continued prayers for us, Todd's mom and my new buddy Sherri (hubby with gbm)...

Then Clan

Friday, January 13, 2012

Fingers Crossed...

Another super long and draining day yesterday... I say for me too, lol, but really it was Todd who had a long day. :)

He was to only do blood work at Dr. Avery's office however we knew going into the appointment that they wanted to keep him for fluids. I met him there... Yes, he drove, and listened as the NP and nurses worked on the plan and discussed whats 'next.' Obviously the biggest concern was the diarrhea.

The wonderful Nurse Practitioner, Tiffany, always makes us feel so comfortable and loved. She jokes with Todd and his personality shines when he is at the office. They made a few jokes and then it was all business. I wasn't able to get the diarrhea injection medicine since it is only available via mail order and even that with overnight shipping will take up to 5 business days. Anywho, Tiffany worked on trying to find a rep in the area that had the injections however all were out of state at a conference.. Boo...

They scratched the injections and now they are focusing on the gastric antibiotic and the prescription Metamucil type of drink. They gave him 2 bags of fluids and something else, maybe potassium and 4 hours later, he was gone. They informed him that he will need to be admitted to the hospital on Tuesday if the diarrhea is not under control. 24 hours later, he's still had diarrhea however it has not been as frequent so fingers are crossed!!!

Today was infusion day and they scratched the chemo, CPT11 since its main side effect is diarrhea. He only had Avastin.... Due to inclement weather (really??) we closed today at 1. When I got home, he seemed pitiful and at this moment, he still does. I left him alone upstairs and every now and then I noticed he was sound asleep. We have a few 'must do's' over the weekend so I will get them done and find times for a nap!

Continued prayers for progress... Thanks all!

The Clan