Brody Update

Brody is now sleeping most of the time.  He has continued to need increases in his pain medications to bring his pain under control and we have added new medications to help with the nausea.  He is still significantly nauseous despite the changes and we are still working on other ideas to relieve the nausea.  Until about a week ago, the nausea had been controlled pretty well and Brody had been enjoying "tasting" and drinking.  He no longer has any desire to "taste" any foods and has not wanted anything to drink either.  Lately, the only time we get to see Brody awake is when he has to "go potty."   He is not going "potty" as frequently as he had been.  He generally wants to go immediately back to sleep after he is done going potty too.  Brody slept through Christmas and had no desire to awake and take a peek at what Santa had brought for him.  He has a mountain of presents still setting under our Christmas tree and a big box from Santa that he has not had the energy to want to open.  We have asked him if we can open the presents for him and he doesn't have the energy to watch somebody else open the presents either.  His buddy, Levi, brought him a new parakeet a few days ago. Brody had been saying that he wanted another parakeet so Bluebee could have a friend to play with.  I expected him to be very excited to see a friend for Bluebee but he was too tired to really even look at the bird.  All he wants is to sleep.  (Bluebee does seem very happy to have a buddy though).  

Last night, Brody actually woke up for about an hour.  He wanted to watch some TV.  This was the first time in about a week that Brody woke up to do anything besides go potty.  I was, of course, ecstatic for that hour of time last night.  He didn't want to talk at all but I enjoyed watching some cartoons with him.  I got to hear his precious, adorable laugh!   Brody started taking dexamethasone as an additional nausea medication yesterday.  It can sometimes cause insomnia so I am hoping it helps him stay awake every once in awhile in addition to helping the nausea.  I am hoping he gets to enjoy some more moments here and there.  

Christmas was difficult.  Brody was with us but he wasn't.  He was sleeping and too tired to join the festivities.  It felt like it was actually our first Christmas without Brody although technically it wasn't.  My mom, dad, brother, and grandmother all stayed Christmas Eve and Christmas Day with us.  Brody had been looking forward to seeing them all again but was too tired to visit with them.  I think he liked knowing they were here for the holiday though.  It makes him happy even if he's sleeping to just know his family is right here with him.  

I am sorry for the lack of updates to the blog lately.  It's been hard to actually put into words what we are going through.  It's just so awful, I have been dreading putting any of it to words.  Our Brody is not really here with us anymore.  He's our sleeping cutie and I am so thankful I can still look at my cute, sleeping little boy.  But, at the same time, I want to cry everytime I look at him too.  He isn't really living his life anymore.  I hope he's having mostly fun and wonderful dreams.  Sometimes though, it sounds like his dreams are sad and painful.  There are times I do hear him crying as he sleeps.   I wake him up when it sounds like he's upset or hurting in his dreams.  I always ask what he was dreaming about and he never remembers what was upsetting.  He did share with me that he dreamed of a little girl named Tiana.  She died of rhabdomyosarcoma in 2011.  She was treated at Toledo Children's Hospital too and Brody enjoyed talking with her a few times before she had died.  He really didn't know her very well though so I was very surprised that he saw her in his dreams.  Tiana made a wish on her birthday shortly before she died that all of the kids in the hospital would get Christmas presents on Christmas and that there hospital rooms would look like their living room would on Christmas morning.  Since 2011 her parents have honored their daughter's wish and put the wheels in motion to bring Christmas presents to all the kids being treated at Toledo Children's Hospital and Mercy Children's in Toledo.  We received gifts for Brody, Geordi and Jaden from Tiana's Wish.  When I showed Brody his gift from Tiana's Wish, he said, "That's funny you are giving that to me now.  I just dreamed about her."    I was so surprised to hear him say this.  I had not been talking to him at all about Tiana nor Tiana's Wish.  I don't know why she would have been on his mind to be dreaming about her.   I, of course, asked him what the dream was about and I got his usual response when asking about his dreams that he didn't remember it.  He said, "I just remember that she was there."  I shared this with Tiana's mom.  She let me know of two other kids Tiana knew from Toledo Children's that reported seeing her in their dreams (one actually saw her standing in the room while he was awake) before they too passed from cancer.  It really makes me wonder if she is helping Brody somehow adjust from this life to the next.  

The Ugly Christmas Ornament Tradition

This is a picture of an ornament my sister so proudly made many,  many years ago.   It's hard to tell but it's a shepherd and a sheep.   She loved this ornament and was so very proud of her creation.  Of course,  every year she would find a prominent spot on our Christmas tree for her precious masterpiece.   And,  every year,  our brother,  Dan,  was jokingly apalled by this "ugly" thing being front and center on our family Christmas tree.   He would always grab it and hide it somewhere else on the tree because it was just "too ugly to be seen."   Julie would always search and search until she found it and place it back front and center again only for Danny to find it there and hide it again.   This cycle would repeat over and over again from the time the tree went up until it was taken down year after year.   This tradition continues to this day.   But now Julie's kiddos are in the court of Julie's ornament is beautiful and should be front and center on the Christmas tree.   Whereas my kiddos team up with Danny and say it's too ugly and seek to hide it somewhere on the tree.  

My parents Christmas tree was put up on Thursday and we drove to my parents on Friday.   Brody couldn't wait to get down to his grandparent's house and assure that ugly ornament was well hidden.   It was the first thing he thought of when we told him Papaw and Grandma put their Christmas tree up.  

Good luck getting that ornament front and center again this year,  Julie!   Lol!

Brody getting ready to enjoy one of his favorite foods... Papaw's Gravy and Biscuits

Only Papaw can make Biscuits and Gravy just right for Brody.   

Brody and Papaw always jokingly argue about whether it's biscuits and gravy or gravy and biscuits.  

If Papaw says,  "I made you biscuits and gravy", then Brody will say,  "I want gravy and biscuits not biscuits and gravy."  

If Papaw says,  "I made gravy and biscuits"  then of course Brody will say he wants biscuits and gravy. " 

They both always have their laughs about this argument everytime.   And,  everytime Brody enjoys his biscuits and gravy or gravy and biscuits no mattet what.  

I will always think of Brody whenever I see a plate of gravy and biscuits or biscuits and gravy.  

Quick Brody Update

We all enjoyed Thanksgiving together.  My mom, dad, grandma, brother, sister and her family all traveled to our house for Thanksgiving.  My sister, her husband, and her 3 girls (Ella, Ava, and Lilah) were all able to spend Thanksgiving and the weekend with us.  Brody was very tired for much of the holiday but was not in pain.  He greatly enjoyed eating some turkey and stuffing.  We were very nervous it would clog his g-tube but he was extremely careful to chew it well.  He got to enjoy it with  no vomiting episode to follow it.  My mom's stuffing is a fave of everybody and especially Brody.  He was upset when the stuffing was all gone.  My mom ended up making him another pan of stuffing this past week just for him.  Lol! 

We had a family Christmas gift exchange on Thanksgiving too.  Brody was too tired at first to open his presents.  His cousins helped get him started and he soon joined in.  Brody was so happy to spend time with family.  He wasn't awake for much of the time but he was smiling and happy to see everyone when he was awake. 

This week Brody was looking forward to making a trip to Lebanon, Ohio to participate in the Lebanon Horse Carriage Parade.  We usually do this parade with my parents and their horses (and usually my sister's family too) each year.  It's an annual tradition in our family now.  Brody wanted to ride in the parade again this year.  We made it to Lebanon for the parade but Brody was just too tired to actually be in the parade.  Geordi, Jaden, my mom, my dad, and I, all did the parade together this year.  Bill stayed with Brody as he napped during parade time.  I was disappointed that Brody did not feel up to the parade but I am so glad we made the trip to my mom and dad's for the weekend anyway.  Brody has greatly enjoyed his visit.  He has been sleeping through much of it but he is quite obviously happy just to be here.  

Brody has continued to celebrate Christmas early.  We have been encouraging him to open a present each day whenever he feels up to it.  Lately, though, he has not felt up to it most days.  He is often just too tired and sometimes in pain or nauseous too.  Fortunately, hospice makes changes quickly to get Brody's pain and nausea back under control.  

Brody has continued to have bleeding from his gastrointestinal tract.  He passes blood-tinged mucus out of his rectum many times per day.  He spends a lot of time "going potty."   Often, he has to go about every 10 or 15 mins for several hours.  He easily "goes potty" 25 times per day or more.  Each time there is usually some bleeding involved.  Having to go potty this many times a day, all of his sedating medications, and fighting cancer make for a very tired little Brody.  This past week Brody is now passing blood into his colostomy bag too.  We have been told that this blood is likely from the tumor infiltrating the gastrointestinal tract or obstructing the gastrointestinal tract.  So far, Brody's g-tube continues to work well/drain well and we are not seeing any blood in the drainage from the g-tube.  Brody's nausea is under control with his current medications and the g-tube.  He continues to nibble and snack on some of his favorite foods being extremely careful to chew everything very well.  Otherwise his g-tube clogs.  The g-tube is the only way for food to move out of Brody's stomach.  Nothing really gets past his stomach (due to his tumor).  Anything he eats or drinks drains back out into his g-tube.  If it gets clogged, too much gets stuck in his stomach until it finally reaches critical volume at which point Brody starts vomiting.  Brody is very much aware of the risk he takes when deciding to eat or drink anything.  He often decides it's worth the vomiting risk to be able to eat and taste food.  All of Brody's calories, fluids, electrolytes, vitamins, etc are supplied intravenously as are all of his numerous medications (except for a patch he wears to help with his nerve pain).  His gastrointestinal tract is pretty much nonfunctional.  

Brody is still a happy boy despite all he is going through.  Lots of smiles and giggles everyday!   He is truly an inspiration!  He is praying for a miracle everyday to take his cancer away but understands that maybe that may not be God's plan.  He still believes he will beat cancer though.  He still talks about what he will do when his cancer goes away.  Sometimes he will admit that he might have to do those things in heaven though and that maybe his cancer won't be gone until he's in heaven.  But he certainly would prefer for his cancer to just go away and for him to stay here.

We are all hanging in there and getting through this ordeal together.  These are horribly awful and incredible precious days all at the same time.  There are no words to describe how horrible it is to watch your child die.  Then at the same time we treasure each and every moment and gift of time together we are so lucky to have. 

We are also extremely fortunate to have had such tremendous support through all of this from our family, friends, and community.  I do not know how we would cope without all of the help.  We are forever thankful!  

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. 

No More Chemo...I'm Calling It

Generally, when I hear the statement, "no more chemo," I feel a flood of happiness.  I usually hear it as a celebratory exclamation as someone has reached the end of a successful hard-fought battle against cancer.  It's a time of rejoice and celebration.   I remember when Brody finished his first year of chemo and we entered that wonderful year of remission.  If only I had a time machine to take us back to that wonderful year.  It started with that statement of "no more chemo."  It was the happiest year of my life.  We had our super-star 5 year old cancer survivor free of any evidence of disease and his loving, understanding, always supportive brothers, 8 year old Geordi and 6 year old Jaden.   It was an amazing year full of adventure with a whole fresh perspective and appreciation for all the good things in life.  Cancer certainly has a way of changing your priorities in life.  Such a precious year of no more chemo!

But, today....today, those words take on a whole new meaning.  "No more chemo."  No more options left for us in this wretched fight!  That last little sliver of hope vanished! 

I can't say I was surprised to hear those words today.  I can't say I really expected there were any options left that would actually cure my son.  I was expecting the most I could hope for was maybe more time.  But at what cost?  Every option left would decrease Brody's quality of life with maybe a very minimal gain in length of life. 

Today, our oncologist had the very difficult task of "calling it."  He had to be the one to make that decision.  The one to decide, "when is enough, enough."   "At what point are you doing things to Brody rather than for Brody?"  This is the point now.  This is the point and he's "calling it."  From this point, if we continue to treat the cancer, we are doing things to Brody, not for him.  Well, we are all FOR Brody.  We support Brody 100% and have to accept that what's best for Brody is to "call it."   "No more chemo." 

As Brody's mother, I could never be the one to "call it."  I could never be the one to utter those words and take that responsibility.  Truly, I have known for awhile that we had reached that point.  But I couldn't "call it."  I couldn't give up.  You always tell yourself to never, never, never give up in this fight.  It's the basic battle cry.  It's a required battle cry.  Thank goodness, I don't have to be the doctor.  I am Brody's mother and will continue to do whatever is best for Brody.  I am not giving up.  I am doing what's best.  "No more chemo."

My heart is on the floor, heavy as a stone.  How do I pick it up and move on?  How can this really be happening?  When am I going to wake-up from this nightmare?  How do I find the strength to cherish and enjoy each precious moment we may have left? How do I tell Brody the words we heard today?  Do I tell Brody?   How do I lift up out of this woeful sorrow and back into the moment, back into life?  Why can't I grieve later?  But I just curl into a ball and keep crying.  I pray and pray and I pray.  I can't tell you how many times just today I've prayed.  But here I sit right now crying. 

Increasing Pain and Nausea

Sorry (once again) for the lack of updates-- we of course, have been remaining very busy.

Brody has been having increased pain and Nausea the last week or so. The nausea hasn't been causing him to vomit or dry heave thankfully and we have 4 different medicines we can throw at it. so we have two of them scheduled every six hours but we have them staggered so he gets one or the other every 3 hours. The other two can be given every 4 hours as needed. We try to stagger these so if he does start to feel nauseous, we can give him "something" for it but sometimes he insists on getting something for it.

Brody's pain levels have been steadily increasing... his left leg hasn't been bothering him too much but he has told us that he can't feel much in his left leg-- he has a little bit of muscle control and can "sort of" stand on it. He was complaining about his left foot itching a few days ago and this really bothered him because he couldn't feel the scratching but he hasn't been complaining about his left leg much if at all the last few days. We have been continuing to put on his "magic cream" on his left calf and back and this has helped to control his leg pain-- we use a cream with ketamine and amyltryptoline in it (we were using it with lidocaine too but we didn't think it really helped much and it appeared to be drying/irritating his skin).

His belly pain has been increasing somewhat and his right leg has also been bothering him now mainly in his calf all the way around... we are unsure of the cause of this pain and it seems to come and go-- it can be very severe (Brody rates it a 9 out of 10) and his previous pain max (when he has to describe it on a scale) has never been more than a 6... his usual is a 3 or 4. We are thinking it is possibly cramping or maybe neuropathic pain from the tumor up in his spinal colunm-- we have begun to use the "magic cream" on this leg too.

In addition they (our oncologist/hospice doctor/hospice nurse) have been increasing his pain medicine dose the last week or so in an attempt to get him comfortable... the latest increase has seemed to help him now and he has been sleeping pretty good overnight without breakthrough pain. Yesterday he was up for about 9 hours straight (feeling mostly good the entire time) which is the longest stretch he has had awake in probably a month.

Trish and I have given up trying to sleep when we are taking our shifts with Brody. Per our schedule he doesn't go more than 3 hours without us giving him nausea medicines and he frequently needs us to do something between these too and he sometimes wakes up in the middle of the night and watches TV for a few hours. Trish has been taking the night shift and I take over between 3:30 and 6 am depending on when I go to bed. I've been trying to be in bed before 9pm.

As you can imagine we keep pretty busy... between keeping up with the house/meals, homeschooling Jaden, Brody care, appointments, etc... we have very little free time (except when everyone is sleeping-- like right now).

Brody has remained in good spirits throughout all of this-- lives in the moment as we all do and we couldn't be prouder of him in his ability to deal with everything he has to do or can't do anymore.... Brody passes his time mainly playing video games or watching TV he isn't really interested in reading, doing crafts, or playing board or card games right now. He really calls almost all the shots-- if Jaden is doing homeschool and Brody wants him to play call of duty with him (surprisingly Jaden does protest this sometimes).... School is paused.  He watches a lot of TV shows and hasn't really been interested in watching any movies lately.... it seems like he doesn't have the attention span to get through an entire movie-- he gets bored or sleepy before it's over.

Brody is pretty upset with Turner Broadcasting/Dish Network as they could not come to an agreement and so Dish has (at least temporarily) dropped the Cartoon Network-- Brody's favorite shows right now are-- Adventure time, Regular Show, Teen Titans Go!, and Amazing world of Gumball-- he has a bunch of these recorded on our DVR...his other favorite show is Rugrats-- these we have been watching on Amazon Prime and thankfully there are a ton of them. It is hard to get him interested in trying new things (like watching movies or TV shows)-- He has refused to watch the move E.T. although we are sure he would like it.

Jaden an Geordi have been very accommodating of Brody and we are very proud of them too... they understand that rule #1 in our house is to not upset Brody.

We have continued to get plenty of support from everyone and for that we are very thankful... the scout families have been stepping up again and have been bringing us meals twice a week-- if anyone else would like to help there is an online scheule here... 

http://www.takethemameal.com/meals.php?t=LJUQ3006

We have been mainly eating/cooking in the Camper in our Driveway (Trish's parents brought up) since the smell of most foods makes Brody Nauseous-- we have been using our crock pot quite a bit.

Anyway---that is pretty much how we are doing-- Brody's pain and Nausea while increasing have been mostly controlled and we have been getting enough support to take care of him properly and spend time with him and we have been remaining in good spirits despite all of this.

Thanks to everyone that has followed us on our journey and have been helping us in so many different ways.

Bill

Brody continuing to feel okay

Brody has been back home from the hospital for 2 weeks and it has now been 2 weeks since Brody officially started hospice care.  Brody's body is currently not strong enough to handle any chemo options he may have left to try.  The remaining options are all cytotoxic options which would more than likely cause more gastrointestinal bleeding (and other unpleasantness).   Brody is still having some slow gastrointestinal bleeding but fortunately nothing as severe as he experienced a few weeks ago.  His oncologist let us know that Brody will need at least 4 to 5 weeks off any sort of chemo to allow his body time to heal.  At that point, we may be able to revisit the possibility of restarting chemo.  Brody's condition will be a major determinant as to whether this will be possible.  

Encouragingly, Brody has felt well most of the time since we have been home and his condition has even improved in some aspects.  Brody was not able to move his left leg; it was practically paralyzed; he could not make it move.   Now, he can move his leg again and is able to walk again.  He is very unsteady when walking and needs to hold our hands to keep steady, but, he's walking!  His leg was EXTREMELY swollen.  Now, it's back to normal size.  Brody's nose and throat have healed and no longer hurt (from the previous NG and NJ tubes).  His G- tube is functioning very well.  His G-tube is pretty much constantly draining stomach contents.  He is putting out about a liter to a liter and a half of bilious fluid from his G-tube.  His gastrointestinal tract is essentially barely moving anything through it at all.  He does not have a complete obstruction but rather partial obstructions and paralyzed/very slow gut motility.  He is on a LOT of pain medication.  This may be a BIG contributing factor to the gut motility problems.  However, he would be in tremendous pain without these much needed medications.  He must take them even though they are most likely worsening his gut motility.  He can only be off his IV pain medication pump for about 20 to 30 minutes before he starts hurting pretty bad.  Fortunately, his pain has been very well controlled with medications (even the nerve pains).  He has still been battling nausea multiple times a day but we now have many more medication options to help him through these episodes too.  He is getting much better control of his nausea.    

Bill and I are fortunate that we are both able to be off work for now.  I could not imagine trying to handle all of Brody's care without us both being here.  Brody prefers to have mom or dad caring for him rather than a nurse.  It's quite the daunting nursing schedule.   Bill and I have essentially become full-time nurses.   Without 2 people, I don't know how in the world we would ever be able to get any sleep.   We are busy all day and night with taking care of him.   I guess, Brody would have had to get used to a nurse watching after him while mom or dad got some sleep if we both would not have been able to be off work.  We are both very worried about what these weeks may bring too.  It's so scary knowing that he his not on any sort of chemo to slow the tumor.  Each day, we wonder if this may be one of very few  last "good" days or the last good day.   We are lucky we both can be here with Brody for however many more "good" days he may have left.  We have known for a very long time that unless God grants us a miracle, we will lose Brody to cancer.   We have been trying to just take things one day and one moment at a time.  Despite the numerous things Brody has had to deal with and the increasing number of things he can no longer do, he is still a very happy child making the most of each day.  I am grateful we both get to just be here with him and enjoy this time.  

The last few days, Brody has been up for most of the night.  I am not complaining.  I have the "night shift" with Brody and have greatly enjoyed our nights together.  It's just Brody and I.  He's been a little "chatter box" and I am loving it!   We've got to spend lots of time just talking.  He is awake for large chunks of time in the day too but with lots of naps.  Things are busier around here during daytime hours, of course.  And, Brody isn't quite the chatter box during the day when the household is so busy.  I am glad his sleep is kinda messed up and I've gotten the chance to enjoy these talk sessions.  Sometimes the topics of conversation he chooses have been hard to talk about but I am glad we to have gotten through them.  He has asked me if it hurts when you die and if he could be "put to sleep so he won't feel it."  He asked, "How is it possible to not feel pain when you're in heaven?"   If he dies, can God let him come back to Earth to visit?  "Why doesn't God just take my cancer away?"  "When I die, can I just think about where I want to go and be there?"  "Can I think about Disney World and just end up riding down Splash Mountain?"  "Can I eat in heaven?  I really want to be able to eat again."  "I don't know anybody in heaven.  Can you come with me?"  These were all toughies but I think we got through them reasonably okay.  He understands that we have hospice nurses visiting regularly to help make sure they do everything they can to keep him comfortable and not hurting.  He knows they will make sure dying isn't painful and that he can be at home when he passes.  He has wonderful ideas about what heaven will be like and I told him it will be that wonderful and even more so than what we can imagine.  I let him know that I probably won't be able to go to heaven at the same time as him.  I told him that none of us really know when we are going to die and so I am not sure when I will be there nor when he will go there.  But, eventually we will all die.   He understands our time on Earth is very short compared to forever and ever.  So, if we go to heaven at different times, it probably won't feel like it's very long before we are there together.  I told him he has lots of people who love him in heaven and that he will feel overwhelming love and happiness there.  He won't be sad and he won't be in pain.  I also told him that sometimes doctors are just wrong.  There have been lots of people that were told by their doctor that cancer was going to kill them very soon and then they went on to live many more years.  I told him miracles do happen and that he has already surprised his doctors many, many times before.  I let him know that this is not the first time his doctors thought his time left was very short.  They could be wrong again.  Brody is pretty confident they are going to be wrong again.  He still tells me over and over that he is going to beat cancer.  He knows I think that's the best attitude to have about it and that his best chance of doing just that is to believe he can beat it.  He also knows that cancer kills lots of people anyway though (including kids).  He says when he grows up he wants to own a restaurant.  He likes to cook and wants others to try his favorite foods.  He wants his brothers to run the restaurant with him.  He says he wants the restaurant to be here on Earth but if he has to do it in heaven instead, then he guesses he will just do that.  Fortunately, most of our conversations have not been about dying and heaven.  It's obvious he has been thinking about these things a lot because these conversations keep happening.  It is also very obvious though that he still thinks he can beat cancer (I think his chances of this are extremely unlikely but I am glad he has this hope.  I think he's much happier having this hope than without it).  He's been happily talking away about many, many things and even the few gut wrenching topics have been easier than I would have imagined.  He's just so matter of fact about it all and just wants to know what to expect, just in case.   He seems so happy and accepting of everything.  He does ask why God gave him cancer a lot.  I tell him that I do not know why and he says, "Well, someday, God will tell me why."   He doesn't bother to keep worrying about the "why."   I wish I could do that. 

 The "why" is precisely why I have an extremely hard time believing in God and heaven myself.  I wish I could believe.  I wish I had faith.  I pray everyday and I believe it's best to teach my children to have faith.  But it's a struggle for me.  This is not new.  It's been an issue for a very long time.  (long before Brody's diagnosis).   It's hard for me to believe in something just because I want it to be true.  I need proof.  How can I believe there is a loving God who lets so many horrible things happen to innocent people everyday.  There are many things far worse than Brody has been through and that's more than bad enough.  There really isn't anything someone could possibly say to me that would suddenly make me believe.  I do have an open mind and believe in the possibility of God and heaven though.  I would not call myself an atheist.  I am more of an optimistic agnostic.  I really am of the opinion that much of the Bible is a work of fiction.  (Please don't be offended by this comment.   I respect that there are many people who completely believe the Bible and have a very strong faith.   I admire these people and greatly respect your opinion and your faith.   Again, I wish I had that sort of faith.  At this time, though, I do not).  But, even though I am not really sure of how factual the Bible may or may not be, I accept that there may be parts that are true.  Just maybe.  I have had some very unusual experiences that I can not scientifically explain away.  I also I have no proof whatsoever that they actually happened to me.  But I know they did.  They were paranormal experiences.  It's because of these that I do have an open mind that maybe there really is a God and there really is a heaven.  I accept that I do not have the answers to everything and I do not know what happens to us when we die.  Maybe we just die and maybe there is something else.   I believe it's more likley that there is something else because of my experiences (I am hoping I was just not crazy and delusional.  I don't think I'm crazy.  But, I guess lots of crazy people don't think they're crazy).  

My grandpa died shortly before Bill and I got married.   As I was walking down the aisle, I had an overwhelming feeling that my grandpa was there.  I was not thinking about him as I started down the aisle.  I was extremely stressed out and suddenly worried about the fact I was actually really going to get married.  Then suddenly, I felt this sense of calm and peace and felt my grandpa standing there.  I sensed his presence.  I turned around expecting to see him standing there.  I could not see him, smell him, feel his touch.   I don't know how or why but it was completely obvious to me he was absolutely there that day.    This one moment in my life is my biggest hope that we do go somewhere when we die.  I shared my story of this experience with Brody when he asked me if he can come to Earth to visit after he dies.  I told him my grandpa seemed very happy too (and he did).  

I have had some other crazy, unexplained experiences.  Not all of them were so pleasant.   Some were downright creepy and I hope I was temporarily insane or having waking dreams.  (Maybe I should save some of those stories for Halloween night fun.  LOL!).  

Anyhow, I have hard time believing in God and the heaven described in the Bible.  Much of the Bible is pretty hard to swallow too.   (I was brought up to believe that I had to accept Jesus Christ as my Savior and that he died on the cross for my sins.  This was my only way into heaven.  I guess I am hoping that's not true because I really don't believe it.  I believed it as a child and was baptized.  I believed whatever my parents told me.  Why would they lie to me?  Later though, I can't help not to believe it or at least greatly question it.   If I don't accept this as a fact with no real proof to back it up, then I go to hell.  Pretty cruel.   Why wouldn't I question it?  The Bible is supposed to hold the answers to my questions.  The more and more I read it, the more and more I don't believe a word of it.  It's crazy!!  Lots of crazy stuff in that book.   I can't help it if I don't believe it.  You either do or you don't.   You can't force someone to have faith.   A good christian believes that God will work with each of us in our own way and that it's not their place to judge.  So I am hoping my family and christian friends will remember that and spare me the backlash.  And, please, please remember that I do admire your faith and totally respect your beliefs.  I wish I had faith but I can't force myself to have faith).   For some reason, even though I have serious doubts on the existence of God and a factual Bible, I keep praying.   I guess it's a habit.  I was always taught to pray and especially during difficult times.  I pray to a God I don't even know is there everyday.  I guess I am crazy.  But I prefer to think, I'm hopeful.  

I know this post is getting rather long and maybe folks do not want to hear my personal religious beliefs.  But, I am facing my son's death.  I can't help but think about life after death right now.  It's on my mind a lot!  This blog is about our journey with Brody fighting rhabdomyosarcoma.  These thoughts are part of this journey.   I have actually been afraid to express how I feel about the subject for fear of many people being offended by my lack of believe. I wish I knew Brody will be in heaven and happy when he dies.  I do not really know this and I don't feel comforted by people telling me that this is so.  I don't really know what somebody could say to bring me comfort.  But, if Brody dies, telling me my son is an angel in heaven or that he is happy in heaven does not bring me any comfort or peace.    I know I will likely be told these things anyways though.   I will remember that these people mean well and they are just trying very hard to find a silver lining to a terrible, terrible situation.  I know that there are lots of people praying and have been praying for our family for a long time.  I greatly appreciate those prayers.  I am still praying too.  I really do wish I had strong faith to go with it too.  

Anyhow, we are continuing to hang in there one day at at time and one moment at a time.  It's the only way through this.  We have had amazing support from our family, friends, community, and workplaces.  I can't imagine how much more difficult things would be without that support.  It does help tremendously knowing that so many people care so much and want to do whatever they can to help.  We feel the love from all of you and we know we are so lucky and blessed in many, many ways.  

Brody is Home

Sorry for the lack of an update-- We were able to get everything in place to leave the hospital on Wednesday afternoon. We had a lot of people (mainly the discharge planner at the hospital) jumping through a lot of hoops to get us home-- big thanks. It was somewhat easier this time around since we knew who to deal with-- it was difficult previously because the discharge planner there didn't know what resources/companies available in our area and also had to work everything out with our insurance carrier or whatnot. We have been extremely happy with Promedica Home Infusion pharmacy-- they are great about getting us stuff we need quickly (they even made a med run down to Columbus for us so we had pain/nausea medicine for our ride home).

Brody had to get his port needle replaced and a few other delays we ended up not leaving Nationwide Children's Hospital until about 6 pm and we didn't make it home until 9 pm.

Trish stayed up late organizing our new collection of meds (they are mostly the same) and writing up a new schedule that so far is working out well. Brody has been comfortable since we got home-- the big things are keeping his pain and nausea under control. His G-tube is draining nicely-- and he slept a solid 11 hours again.

Geordi is still at 6th grade camp this week (comes home today) and Jaden has been at Trishs' parent house with a cold that we want him to be rid of before he comes home-- so Brody was getting a little bored hanging out with Mom & Dad-- the boys' friend Levi came over and played with Brody for a while (Mine Craft and Call of Duty).

As mentioned previously the tumor in has been affecting the nerves going to Brody's left leg mainly causing nerve pain and he has been experiencing decreased motor function in this leg-- between this, the surgery/infection keeping him in bed for 2 weeks he hasn't really used the leg much and he is now having problems standing and walking-- he did get up 5 or 6 times yesterday to go potty which required me to carry him to the bath room... he was able to walk about half way back to his bed (with help) the last time he went last night but he can't really move his left leg much-- we are hoping this improves.

That is mostly it.... will try to write more when we get a chance.

Bill

Brody out of PICU

Brody got moved back up on to the Hem-Onc floor.  This is our first step to going home.  We are hoping to get home by Thursday but it depends on getting stuff in place at home for his care.

(Early) Monday Morning

Brody had his breathing tube removed yesterday afternoon and from a respiratory standpoint has done very well-- He surprisingly didn't need any oxygen afterwards.

His Labs have all been  pretty stable-- his hemoglobin has even increased a little bit.

They weaned him off some of his sedation/pain meds and his main complaint last night was some pretty bad leg pain-- this was in his thigh (which is new)-- but is now feeling better. We suspect this is a new nerve pain- we consulted a neurologist and they agreed that the area in his spinal column where the tumor is can cause this pain.

We have had to pause some of Brody's nerve pain meds and it takes a while for it to come on board and start working again. We are still holding his oral nerve pain meds due to his recent stomach issues... he did get his patch put back on.

His blood pressure is still high (the nerve pain patch will start to help this when the meds in it start entering his system).

His NG tube was removed and they have continued to irrigate his stomach with a little bit of water every hour... it is no longer red tinged and looks to be normal looking.

We are still in the PICU-- should go upstairs later today I hope.

Brody has been up since about 4 pm yesterday right before they extubated him-- I guess he had a few days of sleep and feels rested. There is a TV & DVD player in his PICU room and he has been watching movies pretty much straight since he woke up last night

Trish and I have been alternating staying with him and sleeping. I've been sleeping about 8 pm til 2 am and Trish sleeps from about 3 am til 9 am... I also caught a nap in Brody's room yesterday while they were tapering down his sedation meds. 

Geordi came down for the weekend-- you are supposed to be 12 to come into PICU-- Geordi turns 12 in a few weeks but has been growing like a weed the last year and is now taller then Trish but still a little shorter than me-- and can easily pass for 14 or 15 years old-- so we snuck him in to visit Brody. Rich Naves flew him down here again on Friday-- Trish's dad drove him back up yesterday-- Geordi is going to his 6th grade camp in Michigan this week.

Jaden has spent the weekend at Trish's parents house and will stay there as long as Brody is in the PICU since he can't come back and see Brody.

Thats pretty much it for us...we are taking steps in the right direction the last day or so-- hoping we get out of the PICU and home soon.

As our usual-- we are living in the moment-- at this moment Brody is feeling well, is happy, watching the movie Cars 2 with his dad and in a good mood.... and when he feels well we all do.

Thanks once again to everyone that has been helping us out, following our journey and praying for Brody.

Bill

Brody's bleeding appears to be stopping

Brody's bleeding appears to be stopping!!  His hemoglobin remained steady overnight and even went up a little this morning.   He did not receive any blood overnight either.   The draining from his NG and G tubes are looking more and more clear too.   He is in the process of weaning off the breathing tube.   It is not suspected he will have problems coming off it.   Finally things are heading in a more positive direction!  

Quick update

Brody is still in the ICU and currently in stable condition.   He is still on the breathing tube until it is known for sure his gastrointestinal bleeding has stopped.   It has been left in today even though his respiratory function has been good enough to be off of it all day (and last night).   He hates the breathing tube because it's uncomfortable and he cannot talk with it in.   We will be glad to get rid of it.   Brody continued to need more blood,  plasma,  and clotting factors today.   Within hours of getting more blood,  Brody's hemoglobin drops again indicating he may still be actively bleeding.   He has been watched all day closely and it was suspected he may have needed surgery at any moment to correct the bleeding.   They didn't want to pull the breathing tube,  only to have to put it right back in for another surgery.   The ICU team here is staying on top of his pain control and continue to adjust his pain medication quickly when needed.   His pain medication doses have had to keep going up and up today.   He is not in pain as I am writing this.   Brody's belly was looking more and more distended as the day went on.   An Xray was ordered which showed air in the abdominal cavity.   It was suspected he may have had a gastrointestinal perforation because on the xray the surgeons were not convinced the air pockets they were seeing could have been from his surgeries.   They then ordered a CT scan.   The results of this showed no perforation.   At this time Brody's hemoglobin level has remained steady for the last 4 hrs too.   I am calling that some really good news!   Hopefully wherever the bleeding is coming from,  it's starting to fix itself.   Brody has been in so much pain and vomiting a lot.  Let's hope he's finally about to pull through this ordeal.  I am not sure that's the case just yet but at least I got some positive news tonight.   Thanks again everyone for prayers,  positive thoughts,  and support.  

Pic of Brody in ICU today

Brody has been through a lot since yesterday afternoon.   He is finally resting in the ICU,  not vomiting blood,  not hurting,  and sedated so he isn't bothered too much by the breathing tube.   I am relieved the bleeding appears to have stopped and to see him finally getting a break from the pain and vomiting.  

Brody is in the ICU

Yesterday,  as we are all packed up to leave Nationwide Children's and head home,  Brody started vomiting large amounts of bright red blood and huge blood clots.  He did this multiple times and so,  of course,  we did not leave the hospital.

He had a CT scan last night which showed he was having bleeding around the sight of the new G tube.   The g tube had also migrated  inward and was not snug against the wall of his stomach and was instead floating in his belly.   The GI docs repositioned the G tube and inflated the balloon of the g tube so that it was more snug against the wall.   It was hoped that this pressure would stop the bleeding.   He was also started on octreotide to restrict blood flow to the gastrointestinal tract and a Protonix drip (he has been getting ranitidine in his TPN too.   The Protonix and ranitidine are acid reducers which help protect against stomach ulcers.   TPN is his IV nutrition).   This was tried overnight and it was hoped it would be enough.   Unfortunately he kept vomiting large amounts of blood and kept requiring multiple units of blood and fluid boluses to keep him stable.   The bleeding wasn't stopping. 

He was taken for endoscopy and surgery this morning.   The endoscopy revealed the bleeding was coming from inside the g tube tract and there was also an ulcer.   The ulcer did not appear to be bleeding but clips were placed to seal it.   The surgeon reopened Brody's incision from the g tube placement and applied more stitches in and around the g tube tract.   Endoscopy after this showed the bleeding had stopped.   Yeah!!!   There were several large blood clots in his stomach.   These were broken up and suctioned out as best as they could.   There was one large clot remaining that they were unable to fully break up and was adhered to stomach possibly protecting a previous active bleeding area.   No blood was seen coming from under it.   They decided to leave it alone. 

Brody is now in the ICU under very close observation with breathing tube in place and he's sedated.   The worry is that he may start bleeding again and need to go right back in to surgery.   He has both an NG and G tube that are being flushed frequently to keep both lines open and draining.   The contents of this drainage are being watched for new bleeding and volumes are checked to be sure he is not retaining too much in his stomach and risking him vomiting again.   He is on multiple anti-nausea meds too.   So far there has not been evidence of new bleeding based on this drainage and labs,  etc.   He will remain in ICU for today.   Tomorrow morning they plan to pull the breathing tube if all continues well.   And,  he will be transferred to heme/onc then.   At which point,  we work towards getting him home again. 

It's been an emotionally and physically exhausting couple of days.   Brody has been in a tremendous amount of pain as he has been vomiting between 250 and 500ml of bright red blood and blood clots as he was already in a lot of pain recovering from the G Tube surgery on top of the pain he already has from his tumor.   There are no words to describe how horrible it has been.   Brody has been his amazing and usual extremely tough self.   I don't know how he deals with all of this.   But he does.   He is still happy between the awfulness.   He does not complain about the unfairness.  

Geordi arrived by airplane to Columbus today.  Geordi's best buddy Levi Naves happens to have a dad who is a pilot.  He flew Geordi down to us again too.   Geordi has been staying with the Naves family this week.   He has had fun going fishing and playing in a new fort in the woods behind Levi's house.   The Naves family has helped out us out many,  many times through this journey and we are so grateful to have such wonderful friends.   (We are very lucky to have so many friends and family that have helped us over and over again.   I cannot imagine how much more difficult this journey would be without that support).   Jaden has been spending the week with grandma and papaw.   They have been bringing him to visit Brody frequently too and have been doing his school work with him.   (Jaden is still doing home school).   My sister Julie and her family were able to make it to Columbus for a visit last weekend.  We are all so glad we got to spend that time together.   Our neighbor Barbie has helped out with mowing our yard while we have been away and helping take care of our pets for part of the time we have been away.   Mirissa Corthell has been staying at our house this past week,  caring for our pets and keeping them happy.    Both mine and Bill's jobs have been more than understanding and accomodating to our needs to care for Brody.   We have had many folks praying for us and sending kind words and positive thoughts.   We appreciate greatly all everyone is doing to help us through this.   We certainly feel surrounded by loving,  caring and wonderful people.  

My sleepy boy

Brody is doing well after his surgerys.   And,  LOOK,  no tubes in his nose!   NG and NJ tubes are out and he's off of the oxygen in his nose now too. 

He is very tired but hopefully will feel more energetic as his pain medication is titrated down today.  

I was very nervous last night that he might start vomiting a lot again since he no longer is on any suction for his gastric contents.   He just has the g tube to gravity drainage.  So far (knock on wood) he is doing about the same in the nausea department as he was before this change.   Nausea is still a battle but it's not worse since the switch to g tube.  

Brody's left leg is very swollen and he is having trouble moving his leg.   He had a doppler ultrasound of his leg a little while ago.  I do not know the results yet.   They were checking for a blood clot.  It is suspected it could just be due to pressure from the growing tumor and inflammation from the surgeries.   Fortunately,  his leg is not hurting him.  

We are hoping to bring him home tomorrow.   We have been approved for hospice care (along with giving Eribulin to treat the tumor).   Once we are back home on hospice, we should have more support than we had previously at home.  

Brody is having surgery to remove NJ and NG tubes and replace his nephrostomy tube

Brody is in surgery right now to remove his NG and NJ tubes and also to replace his nephrostomy tube.   The nephrostomy tube has to be changed out every 3 months.   He happened to be due for this at the same time we are dealing with other tube issues.  

The NJ and NG tubes have been causing Brody a lot of pain and irritation.   He will be glad to have these out and let his throat and nasal cavity start to recover.  

We decided against placing the J tube through the G tube today (converting the G tube to a Gj tube).    We are just too nervous placing the J tube through the G Tube will decrease the diameter of the G tube too much.   We are afraid it would prohibit sufficient drainage of the gastrointestinal secretions that accumulate in his stomach.   He has been draining about a liter a day out of his NG.   Being able to get these accumulated secretions out of his stomach is critical to preventing vomiting.  He starts vomiting once he reaches a critical volume of secretions. 

His G tube cannot be put to suction (at least not yet... it would need to be at least 4 weeks before that could be a possibility and it would be very low suction if we did it).   The tract created for the G tube needs to heal before any possibility of suctioning the G Tube.  

We are very nervous about whether the G tube with gravity drain bag will be enough.   Putting the J tube through will make it even more difficult to get enough drainage to keep Brody from vomiting. 

Brody is not able to tolerate feedings through a J tube.  The primary purpose of the J tube for him is administration of medications that we cannot do via IV.   His nutrition needs are all provided by IV.   He has one medication right now that we had been putting into his NJ tube that is critical for us to give for Brody's nerve pain relief.   It had to be given three times a day.   We have decided to  switch it to a very similar medication that only needs to be given once daily instead of three times a day.   It will be given via the G Tube and then the G Tube will be clamped for a couple hours after administration.   The medication is absorbed quickly and so it's hoped he will do okay with this instead.   Other meds we had been given through the Nj tube will be converted to IV instead.  

The interventional radiologist just let me know Brody is done and is being taken to recovery room.  

I am gonna head to that waiting room now.  

More later....

Brody's surgery went well

Brody's surgery went well.   He has his g tube placed and his stent in ureter removed.  

He will have ansthesia again tomorrow and head to interventional radiolgy to place a j tube through the g tube.  

Right now,  he still has his nj and ng (nose tubes) tubes.  They will come out tomorrow after it's verified the new gj tube (tube coming out of belly) is working well. 

Brody is looking forward to getting rid of tubes in his nose.  

His belly is pretty sore right now,  of course,  though.   The Pain Team is working to get better control of his pain.   We know he will be feeling better soon and so does he.  

He is still requiring a little bit of oxygen to help him breathe right now but we suspect he will be on just room air soon.  

Brody is in surgery for his G Tube

Brody is in surgery right now for his G Tube placement.  

He has had no fevers the past couple days and his ANC levels (immune system) are back up.  

Let's hope all goes smoothly today.  

Prayers and positive thoughts please.  

Sunday Night 11 pm...

Brody's counts have improved tremendously over the weekend....

His ANC (Absolute Nuetrophil Count) was zero on Friday morning. On Saturday morning it was up to 120.... this morning it had jumped to 4000 (yes thousand). He did one more dose of Neupogen today (this helps your counts bounce back from chemo).... His last fever was early Saturday morning.  He has felt "ok" but is still sleeping alot of the time.

Unless he takes a big step backwards his surgery should be a go tomorrow sometime.

We hope it is a simple procedure and he isn't under anestesia too long-- the longer he is under the more at risk he is to going to the PICU- so hoping that he recovers nicely and doesn't need any breathing assistance afterwards-- his Ostomy surgery back in July put him in the PICU for 2 days-- he needed a Bi-pap for most of that to keep his lungs open....so keep your fingers crossed for that.

I (Bill) drove Geordi back up to Whitehouse this afternoon for school tomorrow-- Brody enjoyed seeing his big brother and gave him a big hug when he left.

Trish's sister Julie and her Family drove up from Tennessee this weekend and Brody did enjoy seeing his cousins Ella, Ava, & Lilah,  Aunt Julie, and Uncle Jason....

We finally got a room in the Ronald McDonald house- so Jaden can stay up here.

Not alot else going on.... hoping to get out of here later this week if all goes well.

Bill

Saturday Morning- another fever

Brody has had a few episodes of vomiting-- this mainly occurs when his NG tube gets occluded-- and is not draining properly. His pain is pretty well controlled with meds-- it continues to be intermitant and not constant and he can sleep for long periods without pain meds.

He did spike another fever last night (101.8) so they gave him some more tylenol and drew blood cultures again to check for infection-- they have continued to be negative but can take a few days to get results

At rounds this morning, our oncologist told me that he has spoken to our surgeon and the surgeon's main concern (whether to do the surgery) is Brody's immune system-- Brody's ANC (this represents his immunes system) was zero yesterday (can't get lower than that)-- he did start Neupogen injections (a daily injection) yesterday and his ANC is now back up to 120 so is heading in the right direction.

The plan now is to monitor this and if it continues to rise we are looking at possibly having surgery on Monday as long as everything else stays the same. The Neupogen can raise ANC rapidly and does have a delayed effect somewhat so we are hoping his immune system does respond rapidly...

Geordi has been staying at our friends Rich and Rachel (their son Levi is a good friend our our boys) and Rich is a pilot and flew Geordi down in a plane yesterday afternoon-- I picked them up from the airport and they did visit with Brody briefly but had to fly back real soon... Brody made a point of telling us to wake him up when Levi gets here-- Brody was a little bummed Levi had to leave so soon though.... many thanks for flying Geordi down.

We are still on waiting list for the Ronald Mcdonald house-- the hospital was able to arrange a room at the Holiday in nearby at a greatly reduced rate-- Trish took Geordi and Jaden their last night and I stayed overnight with Brody--

Thats pretty much it with us.... thanks to everyone who has helped us out and given us your thoughts and prayers....

Bill

Brody and a giraffe

Brody feeding giraffe last Sunday

Brody has an ANC of zero now... probably no surgery tomorrow

Brody's ANC is now zero.  (Basically this means he does not have a functional immune system right now). Thankfully his blood and urine cultures remain negative.  

It is unlikely he will be able to have surgery tomorrow.   He wouldn't be capable of fighting any infection after a surgery.  

Brody is being started on Bactrim IV again in addition to his other antibiotics to help protect against development of pneumonia.   He will also start Neupogen to help kick his ANC back up.  

Thursday 9/18/14

Sorry for the lack of updates-- been very busy-- this post will be fairly brief but will get everyone up to date on his condition.

Brody has for the most part until recently been feeling ok-- he is still not able to eat and gets all his nutrition via IV TPN... He has felt not great but not horrible either-- his pain is intermittent but is controlled by pain meds and he still sleeps well at night He typically sleeps 12 to 14 hours a day (usually 12 hours and a 2 hour nap). We have of course remained quite busy with his care, work, housework, home school, appointments, etc...

Last week Brody started a new Chemo (Eribulin) which Trish mentioned in a previous post that we were considering. We went ahead and decided to try this new Chemo and it was administered last Wednesday. He was carefully monitored for a few hours as they do with any new chemo drug when a kid is first exposed and he tolerated it fine.

On Friday though Brody developed a fever again. We took him in for blood cultures, they administered a broad antibiotic, took urine cultures, etc... we got the first dose at Toledo hospital and had followup doses delievered to the house where we administered via his port after his TPN finishes. His blood cultures were negative but his urine out his Nephrostomy bag was positive for some type of staph bacteria (I don't know which strain) that should be covered by his antibiotic he was prescribed.

On Saturday we participated in the Toledo Curesearch walk. Brody did not feel well enough to get up that early and since he was also fighting this infection and it was relatively cold that morning--we let him sleep in-- Trish and Geordi and Jaden went to the walk with some friends and the rest of Team Brodinator that was able to make the walk and had a good time... our team raised almost $4000 this year which is great considering the amount of time and effort we were able to put into the event this year.

I want to thank everyone that raised money and donated to curesearch this year--- it is a very worthy cause and it does help pediatric cancer research tremendously.

Anyway-- on late Saturday and into Sunday Brody began to develop a very sore throat-- our thoughts were that the new chemo was causing his mucus membranes in his throat to get raw (a side affect of alot of different chemo drugs) and the NG and NJ were irritating it further.

Brody did feel well enough to make the trip out to the African Wildlife Safari in Port Clinton, OH on Sunday (about 70 miles from our house) and got to feed the Giraffes which is one of his favorite things to do (will try to get some pics posted from Trish's phone)... he had a good time there.

 We took Brody into the Hospital (Toledo) on Monday and were able to meet with an Interventional Radiologist to see if we could get his NG and/or NJ tubes replaced with a G-tube and/or a G-J tube-- he agreed to try and we were scheduled for bright and early on Tuesday morrning for the procedure.

As it was explained to us-- they were going to purposefully distend his stomach with air and get it to push bowel out of the way and get the stomach to come closer to the skin surface-- the idea is to get the tube in his abodomen below the ribs-- with Brody's colostomy on the left side it would have to be above this and below the ribs-- unfortunately-- the stomach would not move where they wanted it so they had to abort (it would be very painful for him to have the tube between his ribs)... the pediatric surgeons at Toledo Hospital can surgically place a G-tube and this is somewhat more invasive then an IR G-tube placement-- we were told that we would have to wait 6 weeks to get it converted to a G-J tube-- with Brody's throat pain we wanted to have zero throat tubes if we were going to have surgery done.

We had previously consulted with a surgeon at Nationwide Childrens Hospital about having  a G or G-J done-- at the time we were of the opinion that his tubes were temporary so we declined but since after 2 months they have proven to be necessary and with his throat pain we have reconsidered-- Brody was very reluctant when we first mentioned this several weeks ago but his throat pain is so bad he really wants them gone and he is now all for this surger.. We were lucky to reach the surgeon we had consulted with before-- she was actually at the airport and heading out of town but she talked to Trish about Brody's options again and what they can and have done at Nationwide and referred us to one of her colleagues... we were able to get an appointment with him yesterday (Wednesday) morning and he arranged to get Brody put on the surgery schedule for this morning- he admitted Brody Wednesday afternoon so they could get all his meds in the system and make sure he was stable enough for surgery... Brody has been sleeping alot since monday-- his pain meds make him sleepy and he has needed alot with his sore throat on top of his Belly pains.

Anyway-- this morning they rolled him down to pre-op but unfortunately he had spiked a fever (he has had intermittent fever since Friday) and the surgeon did not think it was safe to do surgery today. We went back to his room. He later got some Tylenol this which squashed his fever and he actually felt the best today that he has felt in several days-- he watched Netflix (TV shows) and movies with Mom and Dad. He stayed up for about 8 hours straight today which is more than he has since he got this last infection. His throat while still very sore was not as bad as it has been and his voice which he had pretty much lost was back and so we are mostly calling this a pretty good day (after several bad days)...

As of now we are tentatively scheduled to have surgery on Saturday-- as long as Brody is well enough to do so... they switched his antibiotic to another one that hopefully squash his infection and fevers and make him feel better.. they are also taking new cultures. He had bloodwork done and his immune system is pretty compromised from his chemo/infection-- his ANC (absolute neutrophil count) is currently 120-- down from 2600 on Monday.... anything under 1500 is considered Neutropenic--- when he does resume his Eribulin-- we will likely need to decrease his dose-- it was scheduled for yesterday but with his infection and his sheduled surgery it is being held.

We are hoping Brody's surgery is simple and straight forward as this procedure normally is-- however it is possible there is some adhesions from the tumor that might complicate the surgery and we are hoping he isn't under anestesia too long and snaps back out of it right away and avoids time in the PICU like his last surgery--- the idea is to get him home soon. We are looking at getting a large bore G-tube placed on Saturday-- this tube will be large enough for them to pass a new J-tube through it  (but not obstruct his G-tube) and into his Jejudenum (where the end of his current N-J tube is currently)-- the J-tube will probably placed on Monday (we are hoping they might do it on Saturday so he can avoid a 2nd procedure under anestesia.

Geordi is staying at a friends house since his is going to public school-- Jaden is still being homeschooled and came down with us but went home with Trish's parents last night-- we were unable to get a room at Ronald Mcdonald house this time-- we are on a wait list--- Trish and I have been staying in Brody's room on their sofa/bed and an air mattress which luckily doesn't take up too much room in his room. We both of course like being near him if he needs us.. but is now a little difficult (for me anyway) watching nurses do what we have been doing for the last month or so.

We are all doing as well as can be expected.... 

I think that is it-- sorry if this "draft" is a little rough-- trying to write alot in a short period of time and get everyone up to date.

We are either too busy or too tired to write much lately.

Thanks to everyone that has helped us out with house and animal care and everything else-- making a difficult situation that much easier.

Bill  -- AKA Brody's dad-- Geordi & Jaden's too :)