Brody is Home

Brody finally got to come home from the hospital today after a very long and rough week.   He is feeling at least 10,000 times better than he did a week ago and is very happy to be home.    I think he missed his dogs (Chewy and Tori) the most.   He was telling us about several dreams he had about  Chewy and Tori last night and hugging them was the first thing he wanted to do when he got home.  

Jaden,  myself and our friends Carolynn and Mirissa Corthell worked on a special surprise for Brody last night.   Brody is a big Minecraft fan and has been asking for a "Minecraft room" the last couple of months.   We all worked late last night to give him a Minecraft room as a surprise welcome home gift.   Our friend,  Michelle Roush,   brought by a green and black balloon bouquet for his Minecraft room this morning.   Jaden couldn't wait to show Brody the surprise.   Brody was tired when he got home and enjoying the dogs so we had to have Jaden wait a bit to show him.   Jaden finally convinced him that there was something really awesome he needed to show him upstairs.   Brody can't walk very well right now and didn't want our help getting upstairs to checkout what had Jaden so excited,  so he decided to crawl up the stairs.   Jaden was so proud to show his brother the surprise and happy to see how much Brody liked it.   I took a video of Brody seeing his new room.   I will try to post it later.  

Brody is feeling better but does still have several frustrating and difficult things to be dealing with right now.   His groin is still very swollen and painful.   He has leg pain,  weakness in his legs,  and belly pains that come and go.   (belly pains are much less frequent and severe though).   He gets tired and short of breath easily.   He has regained control of his bladder and bowel function again.   We are so thankful for this and that he is not in so much pain.  

Brody will continue with radiation treatments Monday through Friday for the next few weeks and will be at Toledo Hospital for labs,  check-ups,  and blood,  and platelets as needed on Mondays,  Wednesdays,  and Fridays.   Every 3 weeks,  he will repeat the days of chemo he just finished.   Now that Brody's colon is no longer distended,  he will also be getting the bevacizumab every other week too.  

We are all so happy to be home again with Brody and to see him happy and acting like himself again.   It has been a tough week and we are glad to be through it.   It would've been much more difficult if not for the help of so many.   Thank you to all of our friends and family that have helped us in so many ways this week.   I don't know what would do without this support.  

Brody Had Another Good Night and is Showing Signs of Improvement

Brody did not complain of any belly pains last night.   He ate some peaches and popcorn and drank some chocolate milk while watching Brer Rabbit.   He was enjoying his popcorn a little too much for my comfort level though.   I had to make him stop eating it.   I was afraid he was going to make himself sick eating too much of it at once.   He was NOT happy about that.   He would've eaten the entire bag if I had let him.   Also,  before going to sleep his belly was huge (it looked even more distended and as though that situation was getting worse).   I was very worried when going to bed that he was going to be miserable after attempting to eat  and that the distention would get worse rather than better.   But,  quite the opposite started happening.   Each time I had to wake up Brody to have him pee,  his belly appeared and felt to be getting less bloated and distended.  Also,  each time I woke him up when I checked his pull-ups there was no stool in them.   For the past several days he has had NO control of bowel fuction and his pull-ups would always have leaked stool in them.   Not last night though and so far not this morning either.   And,  he had to wake me to tell me he had to go poop!   I helped him to the potty and he was able to hold it until he got on the potty!  

I went to sleep last night so worried and with virtually no hope left and this morning I see the light of a little sliver of hope.   Hope keeps you going; without it, I don't know how to get through.  

Started Radiation Therapy

Brody had a "relatively" good day compared to earlier in the week. His belly is still distended but his pain was well managed today. He has not gotten any Morphine since last night and has been taking the oral bentyl capsules that ease up his "gut cramps" so while he does have occasional belly pain, it isn't for too long or too severe..

He was supposed to get blood today due to low hemoglobin yesterday, but his hemoglobin came up some so they didn't have to give it. His color and dimeanor was much improved today too.
He played games with Jaden and got his chemo and watched "The Tooth Fairy". Then he was taken over to Flower Hospital and did his radiation therapy. The session lasted about 20 to 30 minutes and according to the nurses/technicians, he did great-- he has to lay perfectly still in a body mold they made earlier in the week-- they use lasers shining on his body (the tatoo marks they made on tuesday) to align the machine with his body so they can precisely aim the radiation at the tumor in his spinal column-- the radiation part lasts about 15 to 20 minutes-- 14 more sessions to go (they operate monday through friday)so he will be done in 3 weeks-- his appointments are all in the afternoon vs when he was 4 years old and they made him go at 7:15 in the morning.

When we go back over to Toldeo Hospital, Brody watched Monsters University and finally ate a little bit of food... he hasn't had anything to eat that he could keep down since Sunday, he has been drinking chocolate milk occassionally. He did eat a gummi "car" yesterday-- today he ate a couple pieces of canned sliced peaches and 4 peanut butter crackers out of a vending machine (that is what he wanted) and has so far tolerated them well... he just sent Trish out to get him some "movie" popcorn.

As mentioned previously-- is biggest issue is bowel control and also he doesn't really notice when his pull up has stool in it either so he has been going through alot of pull ups-- hoping the radiation therapy starts helping with this soon. Kid has amazingly tolerated this-- we explained to him why this is happening that it is not at all his fault-- he isn't crazy about mom and dad cleaning him up but he has suffered from "raw butt" before and knows that is a lot worse--

We finally got our "Hamster" problem taken care of--  there are 4 more hamsters that need to be adopted but one of the parents in our boys cub scout troop has taken them and said we have enough to deal with now and she will find homes for them (there were 7 needing homes but she found homes for 3 of them already).

Another issue right now is Geordi- he woke up with a sore throat this morning. I checked his temperature this morning and it was ok-- I gave him some motrin and grape juice and he said it felt better before he got on the school bus.... we got a call from the school nurse today that he had a fever..... took him to the doctor and he tested positve for Strep... so he is on antibiotics and is going home with Trish's dad tomorrow. Hopefully he will recover quickly.

Thats about all I can think of now-- thanks for all the words and prayers-- (most of these we get on facebook nowadays)....

Bill

Brody had another good night

Brody did well again last night.   His belly pain was not too bad and he slept well except for Mom having to wake him up and make him pee every couple of hours.   He still can't empty his bladder fully and does not get a sensation that his bladder is full and he needs to pee.   So,  we gotta have him go every couple hours to keep him from becoming fluid overloaded.   He also does not have control of bowel fuction right now either.   Each time we have him go pee,  his diaper is usually full of very loose stools.   So each time we have to wake him up to go pee it's also a cleaning him up process too.   It is hard for him to get any solid sleep through all of this obviously.   So far,  knock on wood,  his bottom has not gotten very sore.   We are coating his bottom very heavily with bag balm to keep his skin protected. 

Brody remains in good spirits through all of this.   It's amazing how much he tolerates and yet still he is a basically very happy child.   He is a very tired boy too right now and is sleeping most of the day and night.   When he does wake up though,  he usually has a smile on his face.  
He was glad to spend some awake time with his Papaw and brother Jaden yesterday.   They watched Cars 2 together until Brody fell back asleep.    Brody was asking in the middle of the night if Papaw got to watch the whole movie and wanted to know if he liked it.   He says,  "Papaw likes cars,  trucks,  and tractors,  I bet he liked it."     Papaw will have to let him know today what he thought of the movie.  

My dad has been helping us out this week with watching Geordi and Jaden.    He has them busy keeping up with chores at home for us too.   He has them doing laundry,  vacuuming,  cleaning bathrooms,   cooking,  and cleaning the kitchen.   They are taking care of all our numerous pets and of course doing their school work.   Geordi and Jaden are being very big helpers this week and my dad is helping them realize how many little things they can do around the house that add up to be very helpful for the whole family.   My boys are growing up so fast.  

Brody's Surgery Went Well Today and He is Feeling Okay

Brody's surgery went well this morning and he has felt pretty good most of the day.  

He started chemo today and is handling it good so far.  

Brody's hemoglobin is low already from the chemo he had last week.   So he will be getting blood tomorrow.  
Brody will start radiation treatments to spinal column tomorrow and continue on with chemo for next 4 days.

Brody has been able to eat small amounts of solid food today and has been drinking some chocolate milk.  

Slight Change of Plans

It has been decided to not use bevacizumab along with the cyclophosphamide and topetecan due to fear of  bowel perforation.   Brody's colon is majorly distended and stretched thin.  The risk is too great to use the bevacizumab.  

Brody Continues to Feel Better than Yesterday

Brody continues to feel much better today than he did yesterday.   He has been sleeping most of the day as his medications to keep him comfortable also make him very sleepy.   He is still having some belly pains but they are not as severe nor nearly as frequent either.   

Brody had scans  done this morning as part of his radiation planning session.   These scans showed that his tumor has "obviously gotten bigger."   And,  it is obstructing parts of his GI tract.   It has encircled the rectum.   His large intestine (colon) and rectum are especially distended.   
Brody will be starting a new chemo regimen today.   He will be in the hospital for at least the next 5 days as he starts this.   He will be taking Topotecan,  Cyclophosphamide, and Bevacizumab.   He will get the Topetecan and Cyclophosphamide each day for 5 days.  He would get this days 1 through 5 of a 21 day cycle.   The Bevacizumab would then be given also every other week.  

Brody  will continue to receive anti-nausea and pain medications to keep him as comfortable as possible.   He also is still receiving Decadron to reduce the inflammation in the colon and in spinal column area.  

It is hoped these changes will help take the pressure off his colon and rectum and make him feel much better.  

He will be starting radiation treatments to his spinal column very soon too. Possibly looking at Thursday for this but do not know for sure yet. 

He is still having biopsy surgery early tomorrow morning.

If these attempts to get the pressure off the colon and rectum do not work then we may soon be facing the decision as to whether to get a colostomy.   At this point,  surgery is not option to remove the tumor until we can find a chemo regimen that keeps the tumor from growing rapidly.   Otherwise we will be right back to the same point we are right now rather quickly. 

These have been some especially tough and very emotional days for me.  Lots and lots of tears.  I am at least managing not to cry in front of Brody though.   I'll give myself a big pat on the back for that.  

All of Brody's doctors and nurses have been wonderful and compassionate through this whole ordeal.   We aren't the only ones shedding tears.   So are they.   Everybody is doing everything they can to help.  It is so hard though that we all seem so powerless to stop this awful disease.   CANCER SUCKS!!!!

Quick Update - Brody had a good night

Brody had a good night last night.   The morphine,  Bentyl,  and nausea meds kept him comfortable.   Thank goodness!!

He has the "sparkle"  back in  his eyes this morning too. 

He was transferred from Toledo Children's Hospital this morning to Flower hospital so we can get the ball rolling with radiation treatments.  These treatments will be at Flower.   After we are done here Brody will head back to Toledo Children's Hospital.  

Brody has surgery early tomorrow morning to get new biopsy of his tumor and healthy tissue biopsy too.   These will be used for molecular profiling to help better guide chemotherapy moving forward.   It may take up to 2 months for these results to come back though.  

Brody is NOT Doing Well (Horrible Belly Pains)

Brody has endured more pain in the last 2 days than he has ever experienced. And, believe me, he has endured some serious pain.  For the last 2 days he has not been able to eat or drink anything and has been having horrible and extreme belly pains.  I took him into the hospital last night.  They admitted him and started him on IV fluids and IV anti-nausea medicines.  We could hear his belly gurgling and the pains were coming and going.  So, we thought Brody was having problems with stool getting stuck/moving through his GI (gastrointestinal) tract and that his pains were from a stool obstruction.  So we were very hesitant to give him morphine and other medications for the pain that could slow down the GI tract and make it even more difficult to resolve this situation.  It has been awful watching him suffer so bad and not be able to do anything to help him feel better.  He has had much shorter pains like this many, many times in the past and these would ultimately end when Brody finally had a significant bowel movement.  Yesterday and today though the pains were far more frequent and intense and we were moving on to days of waiting for it to finally resolve with no luck.  This evening Brody finally got an abdominal X-Ray to check for blocked stools.  But, there was no signs of this.  Instead, it looks like the tumor is causing a mechanical obstruction of his bowel.  

Brody's tumor is blocking the normal peristalsis of Brody's GI tract.  (Peristalsis in the gut or GI tract are series of wave-like muscle contractions that move food to different processing stations in the GI tract).  The tumor is blocking the gut from being able to complete the "wave."  This results in extreme pain each time the gut is blocked from completing it's series of wave-like muscle contractions.  

Since we now know that he does not have impacted stool (blocked stool), we are now able to start giving Brody medication that slows down the GI tract and helps stop some of the muscle contractions in the gut.  We are hoping starting these will help Brody feel much more comfortable.  He just finally received morphine by IV and bentyl by IM injection this evening to help with all of the pain he has been endearing.   Then, he is continuing to get zofran, benadryl, and lorazepam for the nausea.  

I spent last night at the hospital with Brody and tonight Bill is staying with him.  (One of us still needs to take Geordi and Jaden home in the evenings and then get them each ready for the next day....tonight I am wishing I would have asked a friend to help us out with Geordi and Jaden because I really would rather be at the hospital right now....tomorrow my dad is coming up to help out with Geordi and Jaden though....Bill and I should both be able to stay with Brody tomorrow night).  Brody just got his first dose of IV morphine when I was leaving the hospital with Geordi and Jaden this evening.  Bill texted that Brody was still having some belly pains when he was awakened.  He got his first dose of Bentyl about an hour after I left and Bill said that Brody went back to sleep after this shot.  Hopefully, he is able to stay asleep tonight and not be awakened all night by horrible belly pains.  I am praying for a peaceful night for Brody (and, of couse, a miracle healing too). 

  

An Update

Brody has had a rough few days.  He was admitted for chemo on Tuesday.  He received the high dose IV cyclophosphamide, Mesna, Temsirolimus, and vinorelbine.  He handled it all okay Tuesday night.   He didn't have a lot of nausea and did not vomit Tuesday night.  He was released on Wednesday morning in just enough time for us to travel to Flower hospital to meet with his radiation oncologist there.  Brody had an MRI done on Monday of the spine.  The radiation oncologist reviewed this latest MRI and let us know that radiation therapy to this region is certainly doable for Brody since his previous radiation treatments were not in this area and fortunately the area that needs treated now can withstand large doses of radiation.   The risks and side effects sound fairly minimal for treating in this area too.  (Certainly far less than previous treatments he went through).  The MRI was also sent to Cincinnati Children's Hospital.  The radiation oncologist and neurosurgeon there reviewed the MRI and concurred that radiation treaments ASAP would be the best next step for Brody.   Brody has continued to have problems emptying his bladder and has been experiencing swelling again in his groin (especially after receiving cyclophosphamide).  The swelling is fortunately, much better today compared to Wednesday and Thursday.  Brody was very nauseated on Wednesday and Thursday.  He had problems being able to eat anything without throwing up.  He also started having a lot of pains in his left leg on Wednesday and Thursday.   The nausea and the pains in his left leg were much better today though.  He felt okay most of the day but did have periods of moderate belly pains off and on all day today.  His leg was not hurting him today while sitting or resting but he was unable to walk on it.  

Brody really wanted to go bowling this afternoon and to go see the Lego Movie.  Neither of these excursions worked out today though.  He kept having too much pain in his belly.  Also, Brody didn't want to try bowling from his wheelchair.  He cannot walk very well at all right now and would not have been able to bowl today without being in a wheelchair.  

Brody's hair has started falling out again recently.  He was getting upset today about how much and how quickly his hair was falling out.  He was more annoyed with the pieces falling in his face and onto his tablet he was playing with than he was about actually losing his hair again.  He finds the falling out process to be more annoying than just being bald again.  We may be shaving his head for him again soon so he won't be so annoyed by it.  

Brody is scheduled on Tuesday this next week for his radiation planning session.  During this session they will make molds to hold Brody's body perfectly still for each of his upcoming radiation treatments.  He will need to lie perfectly still for about 45 mins per session.  They are planning to do 15 sessions.  We are hoping that he will be able to start the actual radiation treatments very soon.  We are not sure how long the delay will be between the planning session and the radiation treatments.  We are hoping the radiation treatments will work quickly to shrink Brody's tumor out of the spinal column and that Brody will begin to feel much better.  Many of his recent symptoms are believed to be due to the tumor in this location.  

Brody will have surgery on Wednesday this next week to obtain biopsy samples.  These will be sent to GeneKey in California.  (please see previous posts about what GeneKey will do).  

After the biopsy surgery, he will head up to the oncology wing for chemo again.  He will not need to stay overnight for this one though.  It will just be the temsirolimus and vinorelbine.  

Brody has certainly felt better today than he did on Wednesday and Thursday.  Let's hope tomorrow he will feel even better than today.