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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!

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