It's a Disney Infinity Character! Cool!

A super fun shooting game

Brody watching his new pet parakeet, Bluebee

Brody loves his bird and Bluebee loves Brody right back. 

Brody unwrapping some movies

Brody has been enjoying watching the movies he has unwrapped so far.  

Pain Control has improved

Sorry for the lack of updates-- seems like we never get a free moment.

Brody started a new pain med on Monday and it seems to be helping. The new med helps with neuropathic pain (nerve pain) and he seems ALOT more comfortable since he started it. We have not had to increase his other med since he started it and he overall seems to be feeling much better. His nausea had been increasing along with his pain before and while not gone, it is much better. He has been tasting and "eating" some food in the last week. When I say eat-- we have allowed him to eat some foods that we feel are safe to pass out his G-tube-- So far just oat meal and chicken soup broth with crackers and Fun Dip. He has been wanting to "taste" more foods too-- this involves taking a bite-- chewing it and spitting it out-- he had some pork chops, hot dogs, pizza rolls, and a turkey sandwich. He had not wanted to taste anything in a few weeks so we are calling this an improvement.

Brody continues to sleep a lot of the day-- most days he is rarely up more than 5 or 6 hours (some days as little as 3 hours). While he is sleeping a lot, his sleep is not very restful-- he gets up A LOT to go potty-- I'd say at a minimum he gets up 20 times per day. His tumor for quite some time presses on his colon/rectum and gives him the sensation of having to go potty. He has nothing moving through his bowels-- he hasn't put anything out his colostomy in almost 2 months now and the only thing he is passing is a mucus with a small amount of blood at times-- it is usually just a few drops at a time. Nonetheless, he is up sometimes several times an hour while he is sleeping-- but thankfully he sometimes can go a few hours at a time without having to go potty.

His pain increase he had been experiencing had been in his right leg-- how it would go is he would be sleeping or lying in bed-- have to go pottly, while going potty or about the time he would get up to get back in bed, his leg would start hurting him bad making him need more pain med, repeat.... he still complains of pain in his leg at times but it is not nearly as severe as it had been and so we are calling his pain issues much much better than they had been. 

From a pain perspective-- his only bad day he had this week was on Wednesday when he went to hospital to get his port re-accessed. The hospice nurses can do this but he prefers Nurse Laura or Nurse Ruth at Toledo Childrens Hospital to do his port needle changes

For those that don't know-- a "port" is a sub-dermal central line-- it is inplanted in Brody's chest and goes into one of his major veins with high flow-- all of his IV meds are delivered through this. The Needle and dressing need to be replaced weekly.

We have continued to celebrate Christmas a little each day-- although a few of the days he wasn't up to this.

On Tuesday Brody got his new bird cage but was not up to bird shopping-- He said he wanted a blue parakeet so Trish went and picked one out for him on Wednesday night--- Brody named his new bird "Blueby" (I'm not exactly sure of the spelling)-- Blueby has been pretty quiet since we got him-- Brody has been trying to teach him to talk a little bit but without success.

I would like to write more but I have nursing duty right now and have a long list of things to do in the next hour.

Thanks to everyone for the presents he has gotten so far.... they do brighten his day.

Bill

 

Pretty good weekend

We were pretty worried going into the weekend because Brody's pain seemed to be going up and up and/or he was developing a tolerance to his pain meds. Nearly every day for a week we have had to keep increasing his pain meds dose and it would make him feel ok for a day or two and then have to be increased again. It was bumped up Friday afternoon and overnight he kept having a lot of break through pain. Thankfully on Saturday his pain seemed to simply stabilize (in control for the most part) and it remained there through the weekend. He enjoyed some friends coming over to play, watched some movies, and was in a mostly pretty good mood. We have continued to have a Christmas present per day.....Today's was a game for his 3DS (see pic below).

Brody started a new pain med today (along side of his previous one)-- the new one is more likely to help with his neuropathic pain so we are hoping he will feel better with this one on board. The hospice nurse spent a few hours here with us today monitoring him to make sure he wasn't having any side effects and he seems to be doing fine. He actually woke up about 4 am this morning and was up til about 3:30 this afternoon-- watching movies, TV shows, and playing video games. This stretch is the longest he has been up in quite some time-- he is rarely awake more than 6 hours at a time.

Thanks to everyone that has been buying him presents-- the response to our request has been tremendous

Brody Christmas has Begun

Brody is having a much better day today than yesterday.   His pain medications were increased bigtime and he is doing much better now.  

He has been awake for several hours today and having fun playing with his buddy Levi.  

They both felt like watching some movies and so Brody picked out some presents from under the tree that looked like movies.   He scored with Planes Fire and Rescue and also Maleficient.   Brody and Levi both thoroughly enjoyed watching both of them together today.   (I am absolutely certain he will watch both of these movies multiple times).

Right now they are both having a blast playing Call of Duty,  Black Ops II.  

Brody thoroughly enjoyed wreaking havoc on some cancer tumors today

 

Brody's nurse gave Brody several stress balls personified as various kids cancers.   Brody and Jaden both thoroughly enjoyed destroying the "tumors".   Before each of Brody's surgeries to remove or debulk his tumor,  his surgeon asked if Brody had any questions for him.   Both times Brody said,  "Yep,  when you take my tumor out, can you stick it in a jar and save it for me? I want to spit on it!"  He and his brothers also had plans to kick it, stomp on it, and catch it on fire.  Brody never got to do that to his actual tumor but today he got to do some damage to those stress ball "tumors."

Brody playing Touch to Play Air Hockey at the Hospital Today

Brody went to the hospital to have his port re-accessed,  get some labs done,  and visit with his Toledo Children's Hospital family.   He was feeling mostly good and enjoyed playing several games on the hospital's Touch to Play (gaming system).

We Are Welcoming Assistance with Spoiling Brody this Christmas Season

Brody is getting excited about Christmas already.  We plan to take down our Halloween decorations this week and go ahead and put up our Christmas decorations.  We are not sure how much time we have left with Brody and worry he may not make it to Christmas.   I know it's not really Christmas season yet but we want him to have another Christmas season.  So, we're starting early.  I have several books I want to read with Brody that I am wrapping and putting under the Christmas tree and I am making some special photo albums and videos which I will wrap too.   I plan to let him unwrap one each day.   I have had many people asking me if there is anything Brody would like as a gift.  Many folks just would like to send him something to cheer him up.  If I am going to let Brody open one present each day until Christmas and then still have some presents left for him Christmas morning, then I could use some help supplying these presents for him to open (it would be difficult for us to do this on our own financially right now).  If you would like to help us "spoil" our child this Christmas season, we welcome your help.  We would like to let Brody choose one present from under the tree each day to unwrap.  Then he can unwrap the remainder on Christmas morning if he is still with us.  Any presents that are given to us for Brody that he may not have the opportunity to receive, will be donated to Toledo Children's Hospital Hematology/Oncology Department. 

    
I have created an online gift registry for Brody at http://mygiftlist.com/  Once you are on this website, click on Find Registry.  Then enter Brody's first and last name (Brody Pizzifred).  Then click on View Registry.  Or instead you can click the following link to go directly to Brody’s gift list. http://www.mygiftlist.com/lists/131403
     

The gift registry is a list of gift ideas for Brody.  There is a link for each to where you could purchase each item through Amazon Smile.  Amazon Smile will donate a percentage of your purchase to the charity of your choice.  CureSearch for Children's Cancer is a charity you could choose to support.  Please consider making CureSearch your Amazon Smile charity of choice.  Next to each item on Brody's gift registry at mygiftlist.com there is a box you can check if you purchase that item.  Please remember to do this if you purchase an item from the list.  This way multiple people don't end up purchasing the same item. 

    

Geordi and I also visited Learning Express Toys at the Fallen Timbers Mall and picked out several gift ideas for Brody.  This local toy store has a "birthday box registry."   You choose items within the store and place them in a "birthday box" which is a large plastic tote.  These totes are stored with various gift ideas directly inside the box.  If you are shopping in the store for someone who has created a "birthday box" you can simply choose a toy from their "birthday box."  Brody has a "birthday box" there with his name on it.  The store is aware that this is for Brody's Christmas presents rather than his birthday.  (Normally, it's just for birthdays).  This may be a convenient option for those in the Toledo area.  Also, if you purchase a gift here, you can have it wrapped in the store and they will hold onto the gift for it to be delivered to our house.  (We will stop by regularly to pick up any presents at Learning Express Toys). 

    

Brody has extremely limited mobility these days and tires quickly. The gift ideas on these lists are ones he would likely be able to enjoy in his bed.

    

To make things a little easier, we are asking that Christmas presents for Brody that need to be delivered or mailed be sent to  Cherry Tree Bakery in Whitehouse, Ohio (unless it’s a pet or large/bulky item…in that case, please call or text my cell phone at 419-304-6784 to arrange a time for these if you happen to pick one of these very highly desired by Brody items).   Cherry Tree Bakery is close by our house and we will stop by regularly to retrieve any presents that have been delivered to them.  Here is mailing and phone number information.

    

Cherry Tree Bakery & Cafe

     6726 Providence St
    Whitehouse, OH 43571
    (419) 877-2500
    

We welcome you in helping us “spoil” Brody this Christmas season and greatly appreciate your support and prayers.

Brody's pain continues to increase but it has been managed pretty well

Brody has continued to have increasing levels of pain in his right leg and abdomen.  Fortunately, the hospice team is managing the increasing pain levels quickly and overall his pain is well-controlled. 

Brody has been sleeping for much of the day.  He seems to have developed a bit of an actual sleeping pattern though.  It's nice having somewhat of an idea of when he will be awake.  He seems to have settled into a schedule of falling asleep around 3pm in the afternoon and then sleeping until around 8 or 9am the next morning.  So he has a good stretch lately between 9am and 3pm that he tends to be awake.  When I say he's sleeping from 3pm til 9am the next morning, this is by no means straight sleep.  He is awakened every couple of hours or so for some sort of medication and/or bag needing emptied etc.  We try to not wake him whenever possible but usually he awakes.  He often has nausea and pain episodes that frequently wake him during his sleep too.  There really is not any significant stretches of time without some sort of Brody care needing attention.  Bill and I have worked out a caring for Brody/sleep schedule that assures Bill and I both get some sleep at some point and all of Brody's care needs are met too.  It's a very strict schedule which also includes time for home school for Jaden, taking care of household chores, and helping Geordi with homework.  It gets tricky handling special events and getting Geordi and Jaden from Point A to Point B for some of their activities but so far we are working it out. 

Geordi and Jaden will both soon be starting basketball.  Geordi was pretty upset with me last year that we didn't get him signed up in time.  This year, amazingly, I came through for him.  Practices start next week and Geordi is getting excited.  Jaden loves to play basketball in our driveway so I signed him up too.  He was surprised to find out he's starting basketball practice next week.  He seemed a little unsure of whether he wants to do so but I think he will find it fun. 

The boys all had a fun Halloween.  Geordi and Jaden went Trick or Treating with friends in a nearby subdivision.  It was cold and raining but it certainly did not stop them from having a good time.  Brody was too tired for Trick or Treating but he enjoyed hanging out with his brothers and friends afterward.

Today we all enjoyed a visit from our friends, the Musil family (Amy, Judd, Austin, Ashton, and Aiden).  Austin, Ashton, and Aiden are all roughly the same age as Geordi, Jaden, and Brody.  The boys have remained great friends despite the Musil family moving away to Lima, Ohio (to start up the very successful Lulu's Diner in Lima).  We don't get to see them very often since we don't live as close so it was an extra special day to get to spend some time with them.  It's so much fun to watch all the boys get together again.  Every time they pick up playing like no time has past since they have seen one another.  They almost never fight or argue with one another and just have a plain old wonderful time.   They will be friends forever and ever no matter what.  Amy and Judd are amazing friends too!

Brody is now looking forward to Thanksgiving.  We normally travel to my mom and dad's for Thanksgiving.  This year though we plan to stay home.  Traveling with Brody is more than difficult and worrisome.   Brody is wanting to "taste" some turkey and stuffing.  (He can't eat.  He just tastes things and spits it back out.  His gastrointestinal tract is not moving at all.  Actually swallowing would make him later vomit.).  It should be interesting figuring out how to prepare this meal.  Brody cannot tolerate the smell of food cooking.  Most smells make him very nauseous.  We cannot cook in our house.  I think I have a plan of how to actually get Thanksgiving meal prepared anyway though.  Brody is hoping it works out that his cousins, aunt, and uncle from TN can make it to our house for Thanksgiving and also my mom, dad, brother, and nana.  Keeping my fingers crossed it works out.  We're hoping to do a little family Christmas party that weekend too. 

Most years, Brody participates in a Christmas Horse Parade in Lebanon, Ohio the weekend after Thanksgiving.  My parents have miniature horses that pull decorated carts in the parade each year.  Brody normally always rides in the cart (as do his cousins and brothers).  He is already talking about the parade again and says he wants to ride in the front of the cart for the evening parade and the back of the cart for the day parade.  I am so hoping he gets to do this parade again.  We'll do what we can to make it happen if he still feels up to it when parade time arrives. 

We are all continuing to get through things one day and one moment at a time. I am trying to stay in the moment and not let my mind wonder to all of the what ifs so much.  It's easier said than done sometimes though.   It's still an emotional roller coaster.  I am fine one minute and not the next.  Brody's laughs and smiles pull me out of the sadness.  (Time with Geordi, Jaden, Bill, family and friends does too).  But, I must say, there is no laugh in the world like Brody's.  He has the best laugh ever and he loves to laugh!  

He got a pretty good laugh going at Bill's phone the other day.  Bill was speaking to is phone to set an alarm.  He said, " set alarm to get ready to start chili."   (He wanted to remember to turn on the crockpot for some chili he was getting prepared ahead of time).  Then his phone set/typed the alarm out as, "to get ready to start killing."  Brody was quite amused by this (as were the rest of us...lol!). 

 Be sure to take time for laughs with your loved ones and cherish each moment.  None of us are promised tomorrow.