Pic of Leia, Our Missing Dog... Please Come Back to Us Leia!

Tumor Getting Bigger, Starting New Chemo, Surgery to Block Blood Flow to Tumor Not an Option

Brody had a CT scan done yesterday which revealed Brody's tumor is still continuing to grow larger.   Doctor stated that it is significantly larger than it was at his last CT scan which was done just a couple of weeks ago.   The last 2 rounds of chemo each seemed to work initially but before Brody was able to recover from a round the tumor would start growing larger again.   The last 2 rounds each would temporarily shrink the tumor (we could feel it get smaller) but about 4 days before Brody's blood counts recovered from the chemo,  we could start to feel the tumor get bigger again and grow very quickly in those few days before we could hit again with more chemo.
 
Brody started on a new chemo regimen today.   His doctor is referring to this one as his "last bag of tricks. "  If the tumor is not responsive to this regimen,  we are left with Phase 1 trials.  

Brody's doctor looked into doing an angiogram to map blood supply to tumor followed by surgery to embolize the vessels suppling blood to the tumor.   He said that they didn't really have any experience with performing such a procedure at our hospital so he called and talked to other children's cancer centers to see if they had any experience with this idea.  Those who had tried this before found it to be unsuccessful to stop tumor and since the blood vessels supplying the tumor were blocked,  they were then also unable to effectively get chemo to the tumor also.   The consensus was that the surgery could do more harm than good.  

Anyhow,  it's been all around bad news.   Let's hope that somehow we are lucky enough that Brody responds to the regimen he just started today.   Brody is tolerating the new regimen well so far and the best part of this new one is that it does not require any overnight hospital stays.   Really hope it works!
 
We have had more than our fair share of bad stuff lately but apparently we get to deal with even more emotionally traumatizing stuff.   Our little Yorkie,  Leia,  is missing.   She has been missing since last night.    We have a Radio fence to keep the dogs in the yard.   The fence is still working and Chewy and Tori are still staying in the yard just fine.  And I remember hearing Leia's collar beeping yesterday and she jumped back right away when she heard the beep. Leia is a very small dog.   I am worried an owl,  falcon,  or chicken hawk may have got her.  Or maybe a coyote?  Neighbors have reported seeing 2 of them in their yard before.  And, a couple nights ago, late at night I saw what I thought was a dog in the yard but maybe it was a coyote?   I am hoping the battery on her Radio fence collar just went dead and so she wondered out of the yard.   I am hoping she just got loose and that she will find her way back.  She does have a Home Again chip.  I hope if someone finds her they think to take her to a vet or someplace that will know to try to scan her for the chip.   Leia is the puppy Brody picked out too.   As if he didn't have enough to deal with already and now he has to face loosing his puppy!  

We really need some good luck headed our way please!   Geez!

Dog Pillow

Brody laying on our Beagle Tori.

Brody (and us) had a good weekend. No major issues to report-- he felt ok and his tumor feels "slightly" smaller. I (Bill) had to work this past weekend. Trish and the boys went and saw the latest Ice Age movie and Brody enjoyed it alot. It has continued to be relatively warm so the boys have been staying inside mostly-- which means alot of video games, movies, and TV shows (mostly on Netflix).

Brody has continued to eat ok-- he seems to get enough food into him but as mentioned before, the chomo makes things taste weird so he is very particular about what he eats-- he has been on a Totinos pizza roll kick lately-- but discovered he likes them alot better if made in the toaster oven rather then the microwave-- might have to purchase a small one for the next hospital stay (ours is pretty big). He likes breakfast hot pockets-- particularly the bacon but will pick most of the bacon pieces out of it. It has been a struggle to get different foods into him.

A typical food conversation....

Brody: "I'm hungry"
Mom or Dad: "What do you want?"
Brody: "I don't know"
Mom or Dad: "How about _______"
Brody (getting mad or upset): "Nooooo"
Mom or Dad: "How about_______"
Brody (getting mad or upset): "Nooooo"
--repeat-- til we finally suggest something he likes-- which can take a while...

He will typically get full relatively fast.... Our go to foods lately... pizza rolls, lucky charms, breakfast hot pockets, pop sickles, mashed potatoes with lots of butter and salt and pepper, hash browns from McDonalds, Pizza from Little Ceasars or Marcos (a local chain), pop corn.

Not a lot left to report. Brody is at Hospital with Trish right now getting labs done. Will see if he is recovered enough to start the next Chemo round...

More later...

Silly Face Picture Time

Boys have been very busy having silly,  goofy fun together today.   Hyper,  very loud,  giggling boys today.   Music to my ears.

Brody Feeling Good Last Couple Days and Doctor Considering Interesting New Idea for a Surgical Approach

Brody has been feeling pretty good yesterday and today.  He has had no major pain, he's eating well, and has been in a very good mood.  I can't express how wonderful it is to see him feeling so good especially after seeing him very recently feeling so bad.  In Bill's last post he stated that the day Brody came home from the hospital he had "discomfort" when going to the bathroom.   I wouldn't describe it as "discomfort."  It was more like EXTREME PAIN whenever he had to go pee.  (I think Bill is prefering to concentrate on the good stuff and not draw focus to the bad. Healthier approach, I'm sure but honestly Brody was in a lot of pain).  Brody was screaming in pain and crying for hours about how much it hurt that he needed to pee but couldn't pee and then when he did finally pee it was extremely painful.  I was in tears watching him going through this and was powerless to do anything to help him.  Brody told me many times that evening, "Mommy, I think I would be happier with God."  He has said this statement to me many times this past week.  He has had many times this past week that he was just in too much pain and there wasn't anything we could do to make it better.  Also, the sensation came back that he felt like he had to have a bowel movement every couple of minutes and had to push like he wanted to move his bowels but there's usually wasn't anything to push out   Just the pressure from the tumor kept making him feel like he needed to move his bowels.  He also felt like he had to pee for much of the day but couldn't pee or it hurt a lot when he did pee.  He seemed to be in a constant state of discomfort with interuptions of extreme pain.  I don't blame him a bit for feeling he "would be happier with God" at times.   It was amazing to me how he spent so much of his day in "discomfort" but he was happy anyway.  Despite feeling like he needed to go potty for much of the day even if he didn't need to go, he still spent most of the day happily playing with his brothers and watching movies while in the hospital.  I don't think I know any adults (myself included) that would be able to handle all of that anywhere close to as well as he did.  He's nothing short of AMAZING.   Fortunately,late Wednesday night Brody finally felt better and the bouts of extreme pain subsided and he went to sleep.  I spent most of that night after that experience laying in bed crying and worrying about how in the world Brody's pain could be controlled as his tumor gets larger.  I greatly fear my son dying but my far bigger fear is him being in so much pain for so long waiting for an inevitable death.  I fear him suffering as he's waiting on a death that can't be avoided. I know at the very end you could pretty much knock him out with pain medication so that he's asleep and not really aware.  But what do you do in the in between time when the pain is not constant and you still want him to live his life enjoy the good times he still has which are unfortunately interupted frequently with sudden bouts of extreme pain that can at times be very long and aren't phased by conventional pains meds.  Despite all my fears,  I do still feel  that there is hope that Brody can survive this.  I know the odds are not in our favor but there's still good reason to hope and pray for the best.  And, thank goodness the last 2 days Brody has felt really good.  No major pain (only a slight bit of pain when he pees or has bowel movement), he doesn't keep feeling like he needs to move his bowels or go pee even when he doesn't need to do so, he has control of his bowel function, he's eating (eating a lot actually), and he has been very HAPPY.   The part of Brody's tumor I can feel is only very slightly smaller since a few days ago.  But this slight change is a big change in how Brody feels. 

 

Brody went in to the hospital today to get labs done.  The results were ok.  He didn't need blood today.   While Brody was there today, his doctor and I discussed several possible options Brody still has left to try to get rid of his "stupid tumor" (Brody's term for it).    One of them was very interesting indeed.  Brody's doctor is looking into the possibility of having Brody getting an Angiogram to get a "map" of the blood supply to Brody's tumor and then seeing if he can find a surgeon that will see a way to surgically cut-off the blood supply to his tumor.  I am more than excited about this possibility.   Please cross fingers, pray, and whatever you can think of to bring us luck that this is something that could work for Brody.  Brody will be headed back to hospital again on Tuesday for labs.  I am hoping we will hear more news on this option by then. 

 

Brody's Tumor

The changes in size of Brody's tumor have been so subtle that I decided to mark where I could feel the outline of the margins of his tumor with a Sharpie.   I marked the outline on Wednesday.   Brody came home from hospital on Wednesday after just finishing 6 day round of chemo (5 days chemo and 1 day fluids).   Today (Friday)  I can feel the margin on the right side has shrunk away just a bit from where I had marked it on Wednesday.   Other areas seem to be just about the same size.   So at least one part of the tumor is slightly smaller and others staying the same (not getting bigger) right now.   The tumor had started growing quite a bit larger pretty quick just a couple days before he started this last round of chemo.   So at least the current regimen is slowing the growth down and may be making it a slight bit smaller.   We hope Brody's blood counts are able to recover quickly so he can get chemo again sooner rather than later.   Don't want the tumor to have time to recover and get any bigger.   Want to hit it with chemo again as soon as Brody has recovered enough to handle the chemo again.  

Home from hospital

Brody came home on Wednesday as planned. He did ok while in. We stayed away from the atavan for his nausea this time as it and his chemo drugs made him kind of loopy-- he did have some nausea during the day that would pass after a few hours-- he was ok if he didn't eat before so it helped that he was staying up late and sleeping in and got the chemo earlier each day that he was in.

He was having some discomfort on Wednesday when he needed to go potty after he got home. Yesterday (Thursday) he seemed to feel fine and so was in a very good mood. He and his brothers and one of the boys friends played a bunch of call of duty world at war (4 player splitscreen) and he ate and drank relatively well.

We think it helps him (feel better) to move around as the tumor must move some and sitting up (rather then laying in bed like he does alot when he is in the hospital) and removes pressure from one point or another.

One again- we appreciate the words, gifts, assistance, and prayers we have received while we deal with all of this. Brody has showed us an amazing amount of strength and toughness as he has gone through all of this.

Boys on Jet Express on Way Back from Put In Bay

Bill,  the boys and I all had a pleasant day at Put in Bay,  Oh on Monday.   We took the large Jet Express ferry over to a Lake Erie Island and visited the small town of Put in Bay on the island.  It was perfect weather on Monday for us too.   The boys loved the Ferry boat ride.   We rented a golf-cart to use to drive around the island (boys liked that too).  We visited Perry's cave,  played putt-putt golf,  found our way through a large outdoor maze and raced go-carts together.   After all that we had dinner at the Boardwalk restaurant on the island shore line.   We ate outside on their deck.   Probably,  Brody's favorite part of the day was feeding his Mac N Cheese to the birds.  

Brody is back in hospital for another round of Ifosfamide, MESNA, and Etoposide (another 6 day round)

Brody had a followup appointment yesterday to check labs.   His blood counts came back high enough that he could do chemo again.   So he came in this morning to start another 6 day course of Ifosfamide,  MESNA and Etoposide.   He also had a CT scan today.   Doc says scan shows tumor is slightly smaller than last scan.   The plan at this point is to have Brody keep getting the 6days of Ifosfamide,  MESNA and Etoposide (actually it's 5 days of the drugs and the 6th day is just another day of IV fluids).  So as long as Brody continues to bounce back ok and the tumor continues to respond to treatment,  Brody will be admitted to hospital for this same chemo every other Friday through Wednesday.  

Brody is handling his chemo pretty good today.   Had some nausea this morning before chemo even started,  then nausea with drinking the contrast drink preparing for the CT scan and then vomited once after the chemo started late this afternoon.   He has been feeling pretty good ever since then though.  He has been eating this evening and keeping his choices down ok.   He's been having a lot of diarrhea since the chemo started but fortunately not any painful stomach cramping along with it.   So anyhow,  as far as chemo goes,  he's handling pretty well so far.  

Brody is having more and more difficulty walking.   His foot drop is back and he is turning his foot and leg out to the side more and more to walk and he often complains his left leg hurts when he walks and he will hop on his right leg sometimes to avoid using his left leg when it hurts.   I spoke with Brody's physical therapist a couple weeks ago and the pediatric neurologist he saw previously.   They both came by to check in on him today and discussed plans for helping Brody be better able to use his left leg.   They plan to cast Brody's left leg again on either Monday or Tuesday.   Despite the issues Brody has with his left leg,  it is not slowing him down too much.   Kids just find a way to adapt and move on to the business of having fun.   It's inspiring to see Brody and so many other kids in here,  just adapt and go on about enjoying life despite all the hurdles they have thrown at them.  

Brody Doing ok

Brody came home on the 4th as planned and has been feeling ok. He managed to pee 4 times yesterday (out the normal path) but is still getting most of his urine out his nephrostomy tubes. He has been having fun playing with his brothers and some neighbor kids who have been visiting. Other then the night of the 4th we have been staying inside-- it has been rediculously hot for northwest Ohio (about 100 degrees every day) and we don't want Brody's nephrostomy tubes dressings to  come off from his sweat. So playing board games, video games, legos, and watching some toons. The heat wave is supposed to break on Sunday (back into the 80s we normally see this time of year).

Not much else to report... He has been eating and drinking ok (not great nor bad) and feeling pretty well for the most part.

Brody napping today at hospital and I think having a good dream

Encouraging News to Share

Brody did well again today with his chemo.  Today was his last dose of this round.  Brody has not been able to pee for about a week.  All of his urine has been coming into his nephrostomy bags rather than normal route.  Today, however, Brody finally had to go pee!  This is exciting news!  Hopefully, this means the chemo is starting to work and the tumor has managed to shrink off his urterers enough that some of his pee was able to make it to his bladder.  Also today I am feeling Brody's tumor just below his belly button rather than just above it where I was feeling it when he was admitted for this round.  And, his belly button is looking like it's old self again.  It's an innie again rather than transforming into an outie.  Super excited about these developments!  Brody and I high-fived today after he went pee.  And, he was grinning ear to ear when I told him what a wonderful sign that was.  It was a fairly significant amount of pee too (about 100ml).  Most the day today Brody was not interested in eating at all.  But late this afternoon and evening his appetite has started to pick-up.  He ate a slice and half of Little Caesar's sausage pizza for a late lunch.  Then this evening he had a small bowl of cinnamon toast crunch cereal with milk, half a cup of Spaghettio's, and 1 cup of Cherrio's with milk.  He managed to drink 8oz of grape juice today and 2 Capri-Sun juice pouches.  This is the most food he has eaten in awhile and he didn't get sick after either.  For the last several days Brody kept having a sensation that he needed to move his bowels and he kept trying to move them but there was nothing to move out of there.  His doctor suspected that the pressure from his tumor has been causing this.  He also has had a lot of issues with loss of bowel control this week.  Not fun stuff to say the least.  Today though he only had this happen to him one time early this morning.  He had control of his bowel function today/was able to tell when he really needed to have a bowel movement.  All this talk of bowel function may sound disgusting but it's been a big worry this week for us and today it was so encouraging to not see him struggling with this.  Anyhow, lots of positive stuff happening today.  It seems the chemo he has done this week is helping.  Let's pray it continues to work.  Brody will have another CT scan next week to check the size of his tumor and how effective or not effective his chemo this week has been.  If it's working he will keep repeating the same chemo drugs every 2 to 3 weeks (repeat as soon as his counts are high enough to get hit with it again).  Thanks everyone for all your prayers and support!

Brody Did Well With Chemo Again Today

Brody did well with Chemo again today.  No major discomforts, nausea, or vomiting.  He was less crazy today (less "chemo brain" and less flailing about and hyperness).  Last night was rough trying to keep him from pulling his tubes out, hitting himself, flopping around in bed etc etc etc.  But I was just happy he wasn't in pain.  He was nuts! But at least he was happy and pain-free.  Brody acted much more like himself today.  He just settled down to go to sleep.  Hopefully, he continues to stay calmer. 

 

Brody will get more chemo again tomorrow and then fluids on the 4th.  They plan to let him out of the hospital early in the day on the 4th.  Hopefully, he will be feeling well enough to celebrate the 4th when we get out of here. 

 

Brody will return to the hospital on Friday for labs.  He will have a CT scan within the next couple weeks to see how this round of chemo worked out.  If it is successful (shrinking the tumor) he will keep getting the same chemo he got this week every 2 to 3 weeks (whenever his counts are high enough again for him to get it again). 

 

His doctor does have a few more ideas to try if this chemo doesn't work.  But obviously, tumor is growing fast and we need to find something that is going to work fast.  The list of options is getting pretty small too.  Really need this chemo to actually work!  Keep praying, crossing fingers and whatever else you can think of to send some good luck our way.  We need it. 

Playing Call of Duty on PS3

Feeling (relatively) well enough to play a NON age appropriate game... 

Sent from my DROID X running Android 2.3 (Gingerbread)

Brody Handling Chemo well again

He sent Dad to get one of his favorite foods..  Luckily there is a Little Ceasars close by. He ate 2 pieces. Feeling relatively well today.

Brody Handling Chemo Much Better Today

Brody and Bill are sleeping soundly right now.   I can't seem to fall asleep at all.   Too much on my mind.   It is a huge relief to see Brody sleeping and not in pain at the moment though.   Brody had a pretty rough start to this week of chemo.   The Ifofasamide and Etoposide are pretty HARSH.   Lots of nausea,  vomiting,  diarrhea (and loss if bowel control),  and intense,  incredibly horrendous,  painful stomach cramping yesterday.   Today,  however,  Brody is doing far better.  He got the Ifosfamide and Etoposide again today but not doing too bad at all.   He has even eaten today (cinnamon toest crunch cereal with milk,  toast with butter,  grapes,  sun chips,  grape juice and capri sun pouches).  Brody gets 3 more days of the Ifosfamide and Etoposide and then another day of fluids.   He will hopefully be going home on July 4th.  Brody hasn't had much nausea at all today (meds controlling it very well).   Still have the diarrhea and not much control of bowel function.  Not fun but we're dealing with it.   Brody also is acting a little  strange and a little delerious with the meds too.   Not really acting like himself.   But nothing too crazy as far as delerium goes.  

My Mom and Dad came up yesterday to see Brody and to help us out with watching Geordi and Jaden so Bill and I could both be at the hospital with Brody.   They are watching Geordi and Jaden again tonight but they will have to head back home tomorrow.   Not sure what we are gonna do for rest of the week yet.  We'll figure it out though.  

Anyhow,  I am glad Brody is handling the chemo pretty well today and now let's just pray it's actually killing the cancer cells too.