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...

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

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

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...