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

Thursday, 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...


gerry said...

you are no burden at gotta keep rockin n rollin, just gotta keep fighting. Just keep praying to the LORD JESUS. i will also pray for and/along with you.

Jenna said...

I am crying tears of pain for you all. I only wish I was there to help carry some of this burden for you. I will continue praying for the three of you. I know your days ahead will not be pleasant, but know you have an army of warriors lifting you all up.

Len and Lois Renko said...

Dear friends, How deeply you have been in our thoughts and prayers. You are never a burden to anyone, it is an honor to help serve and help you, although we feel incompetent to you. We will continue to stand with you in prayer, and offer our support. It can never be enough. We continue to feel your pain and we cry with you often. You are never alone, we pray God will sustain you and give you peace. May our God carry you when the walk is too rough for you.We love you all so very much. Len and Lois God feels your pain

Roland Shorter said...

Dear Bonnie and family. Words can sound so feeble at a time like this in your lives. But I am reminded of what a Christian acquaintance said a couple of months ago: For a Christian, this life is Hell. For a non-Christian, this life is Heaven. I am so glad we have an eternity of Life and Joy to look forward to. You are in my prayers. Roly Shorter

Anonymous said...

Praying for you and your family

Jane Johnson said... don't know me but I know Todd from when he was a little tyke. Todd is fortunate to be married to such a wonderfully compassionate person as yourself. God bless you and your family.

Peg Schwarz said...

Kim - A year ago today my daughter had surgery for an unruptured brain aneurysm. Complications followed and we spent almost 3 weeks in the neuro ICU. I want to reach out and give you a big hug and to let you know I'm praying for you and your family. I have a bit of an idea what you're going through. Prayers help. If there is ever anything I can do, please call. I just live up the street at 4414. Tel #423-943-9430. PRAYERS.

Anonymous said...

Bonnie and Kim: You all are under such a heavy load, one that nobody but Jesus will understand - and bear. As I am able, being so far away, I hope to spiritually share in the burden in any way I can. I'm sure that Kim's heart is breaking, that happens with true loving hearts. I pray a huge load of Christ's compassion for her and Tyler, plus you guys. Somehow, it will come through, and hopefully when the need is greatest.

I love the verse in a song, which title I forget: "When you get to the place where Christ is all you have, you'll learn that "He is all you need". Please know that we are standing-by with back-up prayers for you all. Jesus loves you especially now and in the trying days to come. Watching a loved-one suffer and struggle is so difficult, we all know who have experienced that. There is a life beyond this one; let's remember that especially now. Jesus' Resurrection promised that one. I'll ask the whole family - Dietz, Shymansky, and Eckell - to give prayer support. Bob Logan