Playing in the leaves today in Chattanooga TN

CT Results and Halloween

Brody had another all good CT last week...  Brody did awesome in that he was able to drink his contrast drink rather fhen get an NG Tube...  he said he did it so mommy wouldn't get sick watching him get it..  we are all proud of him for being able to do it.

Not much else going on...  we are all busy with school and Geordi is in cubscouts..  seems like we never have a relaxing minute.

Boys are trick or treating right now. In case it isn't obvious.. Geordi is Harry Potter,  Jaden is Anakin Skywalker,  and Brody is Bat Man...  hard to tell fron the pic,  but Lucy is Bat Girl.

more later

Waiting for the school bus

Back to School

Not a lot to report....

The boys start school tomorrow-- They are all excited but Brody might be a bit shy. I (Bill) took the boys to their open house last night-- the boys all met their teachers and got their desks. Brody was acting a little bit scared. I think he will be ok since Lucy (his next door neighbor and best friend) will be with him tomorrow and the teacher is going to let them sit next to each other.

The boys are all going to Whitehouse primary. Whitehouse does full day kindergarten but splits it up so the kids go every other day, Lucy is going to do this but Brody is going to go every day as we and his principal feel he would benefit from the extra kindergarten time.

Brody is still suffering from some neuromyopathy as a result of his chemo- in a nutshell it is nerve damage that starts at his extremities and works its way up-- we mentioned it with his left leg previously but it also has caused some hand co-ordination issues and it makes it difficult to hold a pencil and crayons he can do it but it is somewhat difficult for him to write neatly-- he has come a long way but we and his Principal think he would benefit from the extra time working through it, neuromyopathy induced by chemo is reversible but it just takes a while and generally works back down to the extremities... our only concern was Brody feeling ostracized for having to go to kindergarten every day. It is not uncommon though(there is another boy in Brody's class doing this and there was a boy in Geordi's kindergarten class that did this)... Brody is also continuing his speech therapy through the school district while he is at school and so he won't miss anything by going to his speech class. We will miss spending some one on one time with Brody-- seems like they boys all have to share mom and dad most of the time....

Not much else going on with us....

More later...

Bill

Curesearch Walk

We were near the front

Not much to report

Brody had his doppler ultrasound last week and it pretty much confirmed what they thought. They want us to follow up again in October for Brody's next ct...  Brody sees his radiation oncologist in 2 weeks.

We participated in the Toledo CureSearch Walk last saturday....  sunny day and a bit hot....  there was a pretty big turnout considering it was the first one in the Toledo area...  our team raised nearly $1000...  the walk raised just over $30,000....  thanks to everyone that joined in the walk and donated to our team.... they had a very moving opening ceremony in which they had all the kids being treated or completed treatment go up and say there name and signed a large banner.  Then they had all the teams who were walking in memory of someone who had lost their battle come up and get a white balloon....  then they observed a moment of silence and released together the balloons into the clear blue sky. Some event sponsors provided snacks and drinks.... crafts for the kids and a bounce house.... the organizers did a fantastic job.

Not a whole lot going on with us....  the boys are going to the Ohio state fair in Columbus on Friday (meeting their grandpa there)... we have resumed some homeschooling...  just a little bit to get the boys back in the swing of it since they had an extended break fron school..  just an hour or so a few times a week. 

Thats about it with us,

More later...

July 20-- Latest scan results

Brody had another CT scan last week and there is no sign of the tumor returning-- In addition, the enlarged lymph node that was near his tumor has further shrunk (this lymph node was worrying us). The CT did show that the lower half of Brody's left kidney was shrinking and appeared to be Necrotizing (dying)-- The doctors seem to think that this may be from his surgery last year that when removing the tumor they cut off some of the blood supply to the kidney, this was likely the source of the blood in Brody's Urine he had from February through April-- the timing of this (over a year later) doesn't seem to be right to us-- we are more of the opinion that it is from the radiation therapy-- we have an appointment with Brody's radiation oncologist (a follow up) in the next week or two and will see what he thinks.

In the mean time, Brody is scheduled for a Doppler Ultrasound of his kidney next week which will show the blood flow better and give them a better idea of what is going on with the kidney.... it is possible that if he does need more blood flow to the kidney he will probably have surgery to re-vascularize the kidney... we will obvioulsly know more in a few weeks.

We were scheduled to take a trip out west in late june/early but we had to postpone due to Geordi having a pretty severe and persistant Gastro Intestinal illness.... it got real severe just before we were scheduled to leave and Geordi did get hospitalized for 2 days, it did seem to go away for a few days.... we tried to reschedule 2 weeks later but it came back and we decided to postpone again mainly because the doctors were not sure what was going on-- it was possibly something serious and we didn't want to be stuck out west (out of our insurance network) with a very sick kid. It has now seemed to be gone-- the doctors have eliminated some of the more serious illnesses (thought it was possibly Crohn's disease).  Fortunately Delta airlines allowed us to re-book the tickets so we have until next june to make the trip--- this summer is not looking good (with our work schedules) for rescheduling this vacation--- The boys all start school in late August-- we are possibly looking at traveling during the boys winter school break--but more likely we will wait until next June (when the boys finish school).

Geordi is going into 3rd grade, Jaden into 1st grade, and Brody is starting kindergarten.

Not really much else to report-- we did get a few new additions to our family-- We have a pair of Yorkshire Terrier puppies (they are about 10 weeks old now)-- very hyper alot of the time--but the boys are having a blast with them (other then cleaning up after them).

Thats about it.... will post more when we know more.

Bill

Please Join us in Supporting Brody and Other Children with Cancer.

We will be participating in the Toledo CureSearch Walk on Saturday, July 30th 2011.  The walk will be held at Pacesetter Park located at 8801 Sylvania-Metamora Rd, Sylvania, OH.  Registration/Check-in is at 8:30am and the Opening Ceremony and Walk begins at 9:30am.  We have formed a team for Brody.  Our team name is "Team Brodinator."  You can follow the link below to support Brody and other children with cancer by joining our team to walk with us on July 30th, 2011, or becoming a virtual walker, or making a financial donation to our team. 

 

http://www.curesearchwalk.org/faf/home/default.asp?ievent=479240&lis=0

 

CureSearch for Children's Cancer is a non-profit organization that funds lifesaving, collaborative research for the Children's Oncology Group, the largest children's cancer research organization in the world.  With more than 6,000 physicians, nurses and researchers at more than 200 hospitals in North America, 90 percent of children with cancer are treated at Children's Oncology Group hospitals (including Brody). 

 

More than 13,500 children and adolescents are diagnosed with cancer each year and more than 40,000 undergo treatment annually.  While overall survival rates have increased from 10 percent 40 years ago to 78 percent today, one in five children still loses his or her battle to cancer. 

 

The CureSearch Walk is an opportunity for family, friends, co-workers, neighbors, corporate supporters and community members to come together to honor those whose lives have been affected by children's cancer, while raising funds for lifesaving research. 

 

Please join us in supporting Brody and other children with cancer. 

 

--

 

Tricia Pizzifred

triciapizzifred@yahoo.com

Port removed

Brody's port was removed last week.... no problems... he is bummed he can't go swimming until the incision heals up.  Brody was real brave when they wheeled him in to OR.... he tried real hard to be brave... he didn't cry but he did tear up a bit.... very scarey for a kid....

Not much else to report.... more later.

Bill

Cool dude

Fun, fun, fun!

Brody

Really big cool couch

Kids hanging out at Hilton Head Heroes house

Awesome pool, patio, screened porch area

Living room at Hilton Head Heroes house

One of the Playrooms at Hilton Head Heroes house

Hilton Head Heroes House

Brody loves put put golf

Beautiful sunset in Hilton Head

GOOFY BOYS

BRODY

JADEN

GEORDI

JADEN THE PILOT

BRODY THE AIRPLANE PILOT (at the Sanbox Interactive Children's Museum in Hilton Head)

Quick update- not much to report

Once again, sorry for the lack of updates.... busy again as usual.

We had a great time in Hilton Head-- lots of beach time, watched DVDs at night, slept in most mornings. Will post some pics when I get a chance.

Brody continues to do well--- no blood in his urine for almost 2 months now... We continue to keep him well hydrated. He had a doctors appointment last week and everything was good. He is scheduled to get his port removed next week-- it is a relatively simple procedure but he will be put under general anesthesia for it... he should not have to stay overnight. He is still gaining weight steadily and is up over 40 pounds now

We finally got out above ground pool up and the water is about warm enough to use... been an odd spring here with a lot more rain then normal and with few exceptions, below normal temperatures.... of course it is 90 today.

Thats about it.... we continue to stay busy-- still doing our home schooling and Trish and I working opposite days (most of the time)....

Bill

More when I get a chance...

Bill

Make a wish trip summary

Once again, Sorry for the lack of updates… we have all been real busy..

 

We all had a great time on Brody's make a wish trip we were gone from April 4th thru the 14th. He was treated to 7 days in Florida. We arranged to go down early and pay for the rental car and our lodgings for an extra few days.

 

We flew out on Monday—we were picked up at our house and driven to Detroit where we caught a direct flight to Orlando,Florida. Brody didn't remember his previous flight to Florida when he was not quite 2 so he was excited and took a bunch of pictures of the other planes and the airport as we taxied for take off… the flight was a little bumpy as we flew over a storm that had gone through early that morning but smoothed out and it was otherwise a nice 2 hour flight to Orlando. We picked up a rental car (minvan) and drove to the gulf coast—after stopping to eat on the way and fighting the Tampa traffic we arrived at our hotel not long before sunset in Saint Petersberg near the mouth of Tampa bay. The water was still a little cool but the boys had fun making sand castles til it got dark then we went in the hotel pool and hot tub.

 

The next day was cloudy with rain showers in the morning but it cleared up in the afternoon and we played on the beach and at the pool—watched the sunset again and not long after sunset were able to watch a crescent moon set over the ocean.

 

The next morning was nice but we had to check out of our room… we hung out at a park at the mouth of Tampa bay called Fort De Soto Park til about 4 and played at the park for a while and walked on a fishing pier then started driving back to Orlando—we were just getting through the Tampa traffic again when Brody decided he wanted to eat at Texas Road House (his favorite place)…. Checking my Droid phone I found that there "had been" one in Orlando but it had closed—we found one about 15 miles to our north and no other nearby—we ended up caught in more traffic for a few miles but finally got to the restaurant and Brody was happy…. We found a nice hotel in Orlando with my Droid phone on Orbitz website and paid for it on the way… it was a pretty nice one about a mile from sea world… we stayed there for 2 nights—we played in their pool and went to wet and wild (a water park) for a few hours where Brody and Jaden found some pretty good "kid slides"—we also went in the big wave pool a few times which the kids really liked.

 

The next day (Friday) we checked into the Give the Kids the World Village in Kissimee Florida—this is south east of Orlando and about 15 minutes from Disney world—maybe 20-25 minutes from Universal and Seaworld. The village is laid out pretty nice—there are a bunch of Duplex villas-- they are duplexes with a connecting door to accommodate larger families I imagine—Our villa had 2 bedrooms and 2 baths with a nice living room and kitchen…

 

The village is pretty well run—the staff was very friendly and is made up of full time employees and a ton of volunteers—the volunteers looked to be either students or seniors and everyone there was wonderful….  There was a merry go round, train, a little pond with remote control boats you could drive, an awesome "train room" (an entire town)—pools, etc…. we could eat breakfast and dinner at the gingerbread house and they had a carryout/delievery place called Katy's Kitchen that served between 11 am until 10 pm (we could eat there or call in an order and they would deliver it to our villa—remarkably fast)… we could also order pizza and have it delivered, there was also an ice cream shop…. The whole idea was for you to not have to worry about anything— Make a Wish even provided us a stipend for food and incidentals while at the parks. Each day they brought the boys presents—stuffed animals, videos, games….

 

They gave us  3 day Disney park hopper passes, 2 day Universal park hopper passes, and a 1 day Sea World pass—the parks all comped us free parking and free stroller rental (we got double strollers so both Jaden and Brody could ride)--- the neck pass they gave us (one of us had to wear) allowed us to use the fast pass lines for every ride--- this spoiled Brody especially as he would complain if he had to wait more then 5 minutes to get on a ride.

 

The first day (Friday) we went to Disney's Magic Kingdom—we went straight to Thunder mountain because Brody wanted to ride a roller coaster— he loved thunder mountain…. We rode this a few times then went to Splash mountain and these 2 rides were Brody's favorite rides at Disney—we went on them over and over again….he liked the haunted mansion also--- We did get over to Tomorrow Land— but Brody was too short to ride Space mountain.  We did ride the cars and the a few other things over there but Brody made us head back to Splash mountain and Thunder mountain… we watched the electrical parade but missed the fire works as we were riding splash mountain when they set them off…. We closed the park down at midnight—and finally got back to our villa at GTKTW at about 1:30 am.

 

On Saturday we slept in  and then went to the pool for a while, and Brody decided to head back to Disney… we got there relatively late—went back to Splash mountain and Thunder mountain several times and then talked Brody into going to another park… we rode the monorail over to epcot--- Brody evidently was tired and fell asleep on the monorail—this kind of put him in a bad mood for a while--- he was hungry but couldn't decide what he wanted (other then pizza which we could not find at epcot—in addition epcot is really spread out)—he finally calmed down and ate and we went on the "Soarin" ride at epcot which he really liked—it is kind of a motion ride where you sit in these suspended seats in an IMAX theatre and you "glide" over different landmarks in California—Golden gate bridge, Yosimite, Ocean, Golf course, Dessert, it ends at Disneyland where you have fireworks—really cool ride.

 

By this time EPCOT was closing (at 8 pm) and we headed back over to the Magic Kingdom— we got back to the parking lot and  it was already getting pretty late so we decided to head back to GTKTW and got the boys in bed around 11:30 or so..

 

The next day (Sunday) we went to Sea World—we thought it would be easier to hit Disney and Universal during the week—Sea World was pretty good--- we watched the Shamu Show—Brody said he wanted to get wet so we sat up front and when Shamu splashed him he got scared and wanted to get out of there— Brody found a water ride (log flume type) there called Atlantis that he loved--- unfortunately if you sit in the front you are guaranteed to get very wet—there were not a lot of rides there and we must have rode it 15 times and we were drenched, we did get a chance to feed the dolphins (the park comped us some fish with the neck pass)—fortunately Seaworld closes early so we got out of there about 7 pm and got back to GTKTW about 8 pm or so and got a good nights sleep….

 

On Monday we went to Universal Islands of Adventure— We rode the Jurassic park ride several times, Brody didn't like the 3D spiderman motion ride— Brody was not tall enough to ride their log flume ride or the new Harry Potter ride… we did got on one of those white water rafting rides that get you drenched—and some kid rides in the Dr Suess land they have there--- late in the day the boys found a place in the Camp Jurassic area (a Jurasic park themed play area with lot of caves and trails and giant climbing nets) where you could spray water from at some other kids down below and they can spray back up at you--- they proceeded to have an hour long water fight with some other kids while mom and dad rested…. After the water fight we rode the Pteredons which fly over and around camp Jurrasic on rails… the boys all liked this so we promptly rode it again. We left about 8 pm and got back to GTKTW for another late dinner about 9 pm.

 

On Tuesday we went back to Universal but went to the universal studios side (they are very close to each other)—Geordi was afraid of the Twister "ride" as he has a fear of tornadoes, so Brody, Jaden, & Mom went on this—we went on the Simpsons ride which is another motion ride in an imax theatre—the boys (and their dad) are pretty big simpsons fans and we ended up riding this about 5 times…. We also did the Shrek 4D – which is a 3D show with moving seats (not quite a motion ride)--- we ate lunch at the Bubba Gump Shrimp company restaurant at the Universal city walk (a shopping/entertainment complex between the 2 parks)—Bubba Gumps is Moms favorite resturant---we also rode the ET ride—the boys decided to skip the Jaws ride and Brody wasn't really interested in shows…he loves rides….We got back to the GTKTW about 9 pm or so—we wanted a good nights sleep so we would be rested for a marathon Disney day on Wednesay--- our last full day in Florida—we also rode the Men in Black ride…(you shoot aliens and they tally your score as you go through the ride)

 

On Wednesday we got to Disney about 10:30 am and went to animal kingdom—we wanted the boys see the Bugs life 3D movie/show--- we rode one or 2 other rides there but Animal kingdom is more of a zoo then a park and Brody wanted rides… so we left there and headed to Disney Hollywood studios…. We went straight to the Tower of Terror which Brody rode twice and loved--- he was too small to ride the Aerosmith Roller coaster there…. We rode the Toys—Woodys shootout ride—this is a 3d ride where you shoot at different targets as you move through the ride and it Tallys your score—pretty cool—we rode this a few times… We wanted to ride the Star Tours motion ride but apparently it is gone now or being redone—it was not on the park map--- the boys were disappointed as they are pretty big Star wars fans…. We then got over to Epcot again about 5 or so and rode a few rides there (including Soarin') again then headed back to Magic Kingdom--- we got there right at the start of the Electrical parade which is a bad time--- we watched it again right at the entrance and then headed up main street—which with a stroller was next to impossible as everyone was moving to the central part of the park to watch the fireworks that happen right after--  we managed to cut over to Tomorrowland--- Brody and Mom watched the fireworks while Dad, Geordi, and Jaden went on a ride--- then finally we cut over to thunder mountain and splash mountain again… we went back and forth on these 2 rides until the park closed at midnight and then headed back to the Villa--- Brody fell asleep on the way home and we carried him to bed exhausted….

 

We checked out of our villa the next morning but were allowed to stay at the Village and finally experience some of the things to do there, there is a game room, a big train room with an entire town set up…. Brody put up his make a wish star--- this is inside of a castle and every kid that has been through Give the Kids the World has a star up on the ceiling or high up on the wall--- the village opened in 1986 and there are over 100,000 stars up on the ceiling and walls—Brody and us were allowed to write on it and then Brody put it in a box and the box shakes and with lights a fairy comes and whisks his star up to the ceiling… we then went over to the Candyland playground and played Candyland—we used the cards from a candyland game they gave us while staying there and Mom, Geordi, Jaden, & Brody walked the Candyland path while dad drew the cards for each of them—we played 3 or 4 games before we had to head back to the airport to catch our flight home… we go into Detroit about 7:30 pm and were home about 9 pm where our Dog Tori gave us a warm welcome….

 

As with any vacation it was too short. We wanted to do everything and practically wore ourselves out…. At least those of us not riding in the stroller.

 

Brody had a great time and I hope it made up for at least some of the things he had to endure.

 

As Trish noted in the previous post, Brody had a CT last Friday and we got the results on Wednesday… so far so good. Brody had to drink a contrast liquid prior to the CT (so they get good pictures)— he got an NG tube put in which he hates and this time they couldn't get it down to his stomach until the 3rd try (it kept going into his trachea), Brody was obviously upset getting the NG tube inserted but did fine after they got it in…. He did great during his scans as he has done throughout his treatment. He is by far the toughest kid I know.

 

As far as his treatment and recovery is going-- Brody is continuing to take bactrim (antibiotic) twice a day 3 days each week… this is to prevent him from getting pneumonia as his immune system is still somewhat compromised… Brody's doctor wants him to stay on it for 6 months… He could probably get off it sooner but it is risky and the only way they would know for sure if it has been long enough is to take him off it and see if he gets pneumonia or not. We give him zofran for nausea about an hour before he gets his Bactrim…. He hasn't had any nausea but the bactrim can upset  his stomach so we do it just in case.

 

As far as the blood in his urine, he had a single drop of blood one time, just prior to our trip but not other episodes other then those mentioned previously…. He has been doing real good at staying hydrated—Brody discovered powerade (fruit punch flavored) down in florida and he drinks this down pretty fast—we have been getting the low/no sugar type as there is a ton of sugar in those drinks and he has to drink so much.

 

His hair is still coming in nice and thick and he is slowly putting on weight—he weighs about 39 pounds now…. Still being pretty finicky but getting a little bit better about trying foods.

 

We have been working with him trying to get him ready to start Kindergarten in the fall along with home schooling Geordi and Jaden. Geordi and Jaden have both been doing very well in school although they are both easily distracted from school work…. Jaden has been doing awesome in his reading. They both could use some work in the writing department but overall we are happy with the boys progress over the school year… we are confident they won't be behind in anything when they go back to school in the fall.

 

We are getting ready to go on our next trip to Hilton Head South Carolina—"Hilton Head Heroes" is providing us with a weeks lodging in Hilton Head—we just have to get ourselves down there—we plan on driving down there—it is about 900 miles so we will be taking 2 days to get there and back—we are hoping this will be a lot more "relaxing" then our Florida trip.

 

Once again—I apologize for the lack of updates—it is pretty safe to assume that no news is good news.

 

Thanks to everyone that has been following Brody's progress.

 

Bill

Brody CT Scan is Good

Brody had his 3months post finished with chemo CT scan on Friday.  Just heard the results a little bit ago.  Doc says "everything is fine."  No new tumor growth and lymph node that was enlarged before still is but is not any bigger.  Still thinks it is dead tissue in that lymph node.  So Brody is doing Great!  Yeah! 

At work so most keep this post short.  More later.

Back from Brody's make a wish trip

We all had a great time in Florida... we spent 2 days at the beach, another day in Orlando, and then checked in to the Give the Kids the World village in Kissimee for a week... we hit the theme parks pretty hard but had a great time.... the pics below were all off my phone...

I will try and write more when I get a chance on a real keyboard (vs my phone)

Bill

Easter bunny at Gingerbread house for breakfast

Breakfast at Gingerbread house at GTKTW village

At GTKTW Village

Sorry I set my phone to black and white somehow

At disney hollywood studios

Brody would not pose again

At EPCOT (Brody was being stubborn and would not pose)

At seaworld.

Brody made us ride the Atlantis water ride in background at least 15 times... we were drenched

Jurassic Park ride at Universals Islands of adventure park... not nearly as wet a ride as atlantis

Simpsons ride at universal studios

Simpsons Ride at universal studios... Brody would not pose again.... he made us ride it 5 times... was a pretty cool motion ride in imax theatre

Nemo ride at EPCOT

After Nemo ride

Train room at GTKTW village was pretty incredible

Train room again

Live juvenille alligator... mouth taped shut

Universal parks

Not alot to report

Brody continues to feel good. His hair is coming in nice and thick... it is still short.

We have continued to keep him hydrated... his urinalysis have all come back negative for blood in is urine however he did have one episode 2 weeks ago while at the newport aquarium across the river from cincinnati when Trishs mom took them there. The boys were in the bathroom without an adult and they said his urine stream was very red the entire time... previously it was just a drop or two at the end. His next one, also without an adult present was pink. The next one was completely clear... there was no other episodes of blood and the urinalysis the next day was negative.....

Brodys Oncologist and the Radiation Oncologist ( the one at the other hospital that planned/supervised his radiation treatment) both told us seperately that at this point we should wait and see if this resolves on its own.. ie they don't want to over react at this point.

We have been real busy lately and the boys are excited about our rapidly approaching trip to Florida for Brody's make a wish trip.

Really not anything else to report.

Bill

Gaining some weight

I weighed Brody last night and he weighed in at 38.6 pounds... this is somewhat of a milestone since that was his weight the day he got hospitalized last year.  He still has some growing to do.... as he is a year older then last year.

The boys are going down to Trish's parents for the weekend... i'm sure they will have loads of fun.

Another good urinalysis report

Sorry for the lack of any updates but you can almost always assume that no news is good news.

We have been keeping Brody well hydrated and once again there was no blood in his urine this week-- they told him to come back again in 2 weeks to recheck.

We have been pretty busy, we had a combined birthday party last Saturday-- Brody turned 5 on March 3rd, Jaden turns 6 on March 23rd... and Bill turned 39 (again) on March 9th. We had some friends and family over and the kids had a great time playing games and we even had a magician come to the house to entertain.

Brody has been feeling pretty good-- his hair is still short but coming in fast. He is still very finicky so it is difficult for us to get him a balanced diet-- we try our best.

In the picture in the previous post-- we went down the bike trail that is across the street from our house (an old rail line they paved over)-- Geordi and Jaden rode their bikes and Brody ran after them (I would let them go a few hundred yards ahead of me and the dog and then wait for us to catch up)-- That picture was taken at the end of our road which is 3/4 of a mile from our house.... Brody ran (not continuously) there and back.

Not a whole lot more to report... we try to have fun every day-- the weather warming up (finally) has definitely helped that.

More later.....

Enjoying the 60 degree weather

Brody and Lucy Racing

This is Brody and Lucy racing over an obstacle course at Sylvania Playland Last week

http://www.youtube.com/watch?v=785YcdhCogo&tracker=False.

B-day last week

Another good urinalysis result

Brody has had a good week.  He has been feeling very good, lots of hair coming back in (his eyelashes and eyebrows are back), and he has had NO visible blood in his urine this week.  We took a urine sample into hospital today and lab results all good on this one too. 
They had to do a monthly blood draw today at the hospital while we were there.  We didn't know that they were going to do a blood draw today either so we didn't put any EMLA cream on Brody's port access before we left to go to hospital (EMLA takes about an hour to numb the skin and has helped make all the "pokes" Brody has had to endure much more bearable).  The nurse offered to draw blood from Brody's arm but Brody was scared to do that since he is so much more used to just using the port access.  Unfortunately accessing the port requires much thicker needle than through arm.  Brody decided he would rather do that though because it's what he's used to even though we explained it would hurt less in the arm.  He wasn't convinced though.  So Brody endured accessing his port without his numbing cream.  And of course today when he didn't have his cream, the nurse was having a very hard time getting a good blood return after accessing the port.  Took a long time and was quite uncomfortable for Brody.  But he's a tough kid and didn't even cry one tear.  (His brothers would have been screaming if they ever had to go through what Brody did today with his port). 
Brody and Jaden are both really looking forward to their birthday party this weekend.  I can't believe Brody, my baby, is already 5years old and my little Jaden will be six in just a couple weeks.  Time goes by so fast! 

Urinalysis Results

Good news....We heard back a little while ago that they didn't measure any blood in his urine this week and we have not seen any visible in 8 days. We also got back today the results of they cytology analysis they did on his sample last week that did have blood in it... the results of the cytology were Negative meaning they did not see any cancer cells in his urine sample. We are continuing to keep Brody hydrated-- getting 64 ounces into him has been a chore-- we consider it success to get over 50 ounces into him. We still don't know what caused the bleeding.... no infection, but hopefully it was something that resolves itself-- the hydration seems to be helping.

Brody continues to have fun-- he is currently down at Trish's parents house-- they wanted to be there for a barn raising. Trish's parents are having some Amish people build it for them. Kids think its really cool to watch.

We took Brody to an indoor play place (has inflatable slide, swing sets, etc)-- called Sylvania Playland....http://www.sylvaniaplayland.com/  with his Brothers, Lucy from next door, and Kyle-- a friend of Geordi's from Kindergarten and first grade who lives up the road from us-- this past Sunday...this was an early birthday celebration-- we had pizza afterwards.....Brody turns 5 tomorrow.... I worked last night and Trish worked today... We are going down there tomorrow to get the boys and celebrate Brody's birthday... 

Not much else to report-- which is a good thing ;)

Bill

Brody & Jaden sledding a few weeks ago

http:/www.youtube.com/watch?v=HINUYlGnFno

Nothing to report

Sorry forl ack of updates. We took Brody in on tuesday for a urinalisis. He had less blood in his urine... however when asked how much he had drank each day we couldn't answer since they didn't tell us to keep track.... we were also not confident he had got enough to drink while at Trishs parent house for he weekend.. Brody is a sippper so it is hard to get him to drink much anyway.  They told us tues they wanted  him to drink 64 oz per day... this is alot for him... we have struggled to get him to drink that much and a side result of this is he hasn't been hungry since he is drinking so much milk and oj... so his appetite is alot less... they want to recheck his urine on monday....so that's where we are now.... still waiting....

Boys are continuing to have fun every day...

More later....

Bill

Brody getting tucked into bed tonight

Freezing Rain and Snow Prevented Us From Getting Home to Toledo Today

Well today we were suppose to make the trip from Cincinnati area to Toledo Ohio and stop by hospital in Toledo once we got back to have Brody provide another urine sample.  It was in the upper 40's and raining when we left Cincinnati area but by the time we made it to Lima Ohio (an hour and half from home) the roads were just a sheet of ice.  I was hoping we would get much closer to Toledo before hitting the freezing rain and snow that I knew was in Toledo area.  Thought maybe it would be just warm enough for most of the trip to avoid the bad roads for majority of the trip. But nope.  Oh well, we ended up stopping in Lima and getting a hotel rather than risking the drive.  The hotel is really nice.  Very clean, friendly staff, and a indoor heated pool.  Boys and I went to Walmart very close to hotel and got some swimming suits and then came back and had a great time in the pool.  Then we went out to eat at Texas Roadhouse right next to the hotel.  Jaden was quite excited about this since that is his favorite restaurant.  He loves their rolls and butter, the peanuts, the ribs, and that it's pretty loud in there so I don't have to bother telling him to be quiet over and over again.  (Usually my kids are the loudest thing in any restaurant and I am constantly trying to settle them down but not at Texas Roadhouse.  They have loud country music that drowns out any noise from my kiddos so I don't have to worry about kids annoying anyone with their loudness).  Anyhow we really wanted to get home tonight (we miss Bill) but we made the most of it and just had a good time this evening.  Hopefully this weather will settle down soon and we can make it home tomorrow. 

Brody has been having more blood in his urine again today.  Hopefully we will get to meet with the urologist tomorrow and figure out what is going on.  I called the hospital today and spoke with a nurse in the Peds oncology wing and told her we weren't able to make it to hospital today to provide urine sample for them to check for blood but that we are still visually observing blood in the urine. I asked her to speak with our oncologist about going ahead and arranging the consult with the urologist for Tuesday(tomorrow) or Wednesday. 

Anyhow, let's hope we get some news soon as to what is causing the blood in urine. 

Hope all my friends in Toledo with no power in this cold, icy weather get power again soon.

Time to get some shut-eye.

More blood in urine over the weekend

The boys went to my Mom and Dad's for the weekend while Bill and I were both scheduled to work for the weekend (turned out that I ended up getting very sick with nausea, vomiting, and diarrhea on Sat though so ended up not going to work Sat.  Feeling much better today, Thank Goodness).  I am headed to Cincinnati area to go pick up the boys right now.  Unfortunately riding in a tow truck right now though.  The van started having a bunch of steam coming out from under hood as I was coming through Lima Ohio.  I was 96 miles from my parents house and thank goodness AAA plus tows up to 100 miles at no charge to me.  So the tow truck will get me and the van the rest the way.  I called my Mom before I left and she told me that Brody had a little bit more blood in his urine that they could see this weekend.  He goes tomorrow for another UA.  If blood still tomorrow Brody will see urologist.  I want him to see urologist regardless since still blood just yesterday.  I'll post again tomorrow as soon as I know what's next for Brody.

Right now I am really looking forward to just making it to my Mom and Dad's to see the boys again.  Missed them a lot this weekend but was really glad they were at my parents when I suddenly got so sick.

Hope everyone had a great weekend! 

Feb 17

Brody has been drinking alot of fluids this week and it has been a few days since we have seen any blood in his urine. We are obviously hoping he had some type of irritation and it has passed.

Brody continues to feel well. He has continued to be finicky about his foods. It is quite a challenge to get him to eat any of his non "go to" foods.... today he was on a grilled cheese sandwich kick.

He has started putting back on some weight (assuming our scale is correct)... I weighed him at 37.5 pounds today... to put that in perspective he weighed 38.6 pounds the day he was diagnosed last year and has weighed as little as 34 pounds during his treatment. He looks taller now so is still pretty thin... his arms and legs are still pretty thin.

We continue to try to have fun every day....

More later....

Bill

Blood in Urine

Friday evening, Brody started crying for us from the bathroom as he was just finishing peeing.  He discovered he had blood coming out and some had gotten on his leg.  The red stuff on his leg is what upset him.  He wasn't as worried about the blood part (in his mind he thought he had simply eaten too much ketchup and that's why it was red but he didn't like it on his leg). Bill and I were of course very alarmed.   We called the hospital and were told since he did not have a fever nor any pain nor was bleeding very much that we needed to bring him in first thing Saturday morning rather than Friday night.  We took him in Saturday morning and they got a urine sample to do a UA and culture.  The results came back clear for infection but there were red blood cells in the urine (blood in urine).  There was not a lot in there though so we were told the first treatment was lots of fluids (hydration).  Brody took cyclophosphamide (chemo drug) and radiation treatments to treat his cancer.  Both of these can cause bleeding in the bladder.  Generally it doesn't happen this far out from treatment but it can.  So if this is the culprit and it's a mild case of bleeding then he may heal on his own with lots of fluids to help keep down irritation of the bladder.  The worry though is that Brody may be relapsing/have resistant cancer cells already.  Brody's doctor stated that he is "very concerned Brody may be relapsing."  Scary, scary, scary.  I took another urine sample in today to be analyzed to see if there is more blood in there and whether there is more or less than the last sample.  We are to take another sample next Monday and keep Brody well hydrated.  If there is still bleeding next week then Brody will get general anesthesia and the urologist will feed a small camera up through Brody's urinary tract to get a real good look at what is happening.  Brody was scheduled for surgery to have his port removed (thing in his chest they administered his chemo through) tomorrow.  But that surgery has been canceled in case Brody may still end up needing that again soon.  All of this is very upsetting.  I can't stop crying everytime I get a second or two to myself.   I am trying to think positive though even though I am very worried.  Deep breaths and just getting the crying out every once in awhile are helping.  I think I'm coping as healthily as can be expected of any Mom going through this.  So don't anybody worry to much about how I'm dealing with things.  I'm handling it.  One thing that helps me though is for folks not to constantly ask me, "How are You doing?"  I know everyone that asks is just trying to be a good friend and let me know that they are there for me if I need someone to talk to.   It's sweet and I really am very thankful to have such wonderful friends and family to help support all of us through this but it really is hard for me personally to talk about my feelings all the time when I am going through something very difficult.  I am putting my feelings right here on this blog and it helps me to write them out but I don't want to talk to everyone about how I am doing when I am just trying really hard to be strong, think positive, take deep calming breaths and think happy thoughts.  That is how cope with this.  So please as a favor to me and to help me, please don't ask if I am ok.  Sounds like a strange request, I know.  But it really did drive me crazy when Brody was first diagnosed having everybody wanting me to talk and discuss how I personally was coping.  It just kept getting me depressed and I don't want to go through it again.  I am a very open person and will share my feelings frequently on this blog but just don't want to talk about them all the time.  Feel free to talk to me about anything but how I'm coping or feeling about the situation.  I am worried, scared, angry, sad, but hopeful that Brody will be just fine and that his bladder is just irritated.  Brody feels perfectly fine right now and is very happy.  I just want to try to focus on just being happy and enjoying spending time with Brody rather than being forced to think about all of my feelings constantly when some of them just aren't pleasant.

On a brighter note, we all had a wonderfully fun weekend at an Indoor Waterpark despite all this recent disturbing blood in urine business.  My sister, Julie, her husband, their 2 girls (Ella and Ava) and my Mom and Dad were able to be there too.  We also took one of the boys friends, Kyle, with us. The boys all had a GREAT time.  So did Bill and I.  It was just so nice to see all the kids just having a blast.  It was really nice to have friends and family there too enjoying the weekend with us. 

Now time to see what we can do for fun today! 

The boys sledding last week

The "blizzard" last week gave us "officially" only about 6" of snow-- no big deal although some snow drifts were pretty big (from the wind)... we got another 7" on saturday in a surpise storm that was supposed to only give us 2 or 3. This is the boys sledding last thursday at a nearby park.

CT Scan Results Good

We got Brody's CT scan results back.  Doc said it all looks good.  Everything clear except the lymph node that was still enlarged last time.  This time that lymph node is smaller.  Oncologist thinks it's still very possibly all dead cancer cells in that lymph node and surgery too risky to remove it at this point.  So plan is that Brody is to be considered done with chemo now still and he'll have his chest port removed sometime in next few weeks.  And he will get CT scans every three months.  So one minor surgery left and some oral meds he'll take for 6 more months and then he should hopefully be all done if no recurrences.  Brody got his cast off yesterday too and was so excited to finally play in the snow and get in the hot tub again.

Week 41

We are at hospital as scheduled... labs came back amazingly fast today.. usual is 90 minutes... came cack in under 20 minutes. His hemoglobin is still low but not low enough for a transfusion. We are waiting to get a new cast put on his leg now.

Chemo Souveneirs

Brody got his last neupogen shot last night... by my count that was about the 146th shot he received and about the 134th one I gave him at home (Bill got the pleasure of doing all the pokes at home). Our sharps container is a 1 gallon vinegar bottle. One of the 5ml prefilled syringes we use is sitting next to it.  The bottle is completely full of used syringes (I had to shake the bottle to get them to settle to get the last few in)....

Hopefully that was the last one he will ever have to do.

Brody went in for labs yesterday and did NOT need blood.

He has a CT scheduled for Jan 31st (week 42).

Once again, thanks for all the comments and to those of you that have followed us on our Blog.

Week 40

Brody is still at the hospital with Trish and did not need blood today but his platelets were low so he getting them... this goes in alot faster then the blood so he should be coming home shortly... he has been continuing to feel pretty good this week... he should be at the low point for his counts today so should only feel better from here on.

Brody with his speech therapy teacher

Brody's speech teacher has been coming to our house once a week to work with Brody.  Soon he'll be able to meet her at the school (once his immune system is back to normal). 

Brody playing with his marbles toy

 

Brody with his cast

Brody doing well

As we have mentioned previously, Brody has finished what is his hopefully his last chemo ever.  He will have a CT scan in a couple weeks to confirm all looks good.  After that he will have his port removed and will continue on some of his oral medications for awhile (2 to 6 months) until he his little body has fully recovered from all the chemo he has received.  Brody will also be going through some physical therapy to help him walk normally again.  During his surgeries, he suffered some nerve damage to some of the nerves that control the ability to raise his foot.  If he has leg and foot stretched out and you ask him to pull his toes towards his face or if you hover your hand above his foot and ask him to raise his foot to touch your hand, he is unable to do so.  He has a condition referred to as "foot drop."  It is just in his left foot.  His right foot is ok but his neurologist stated that there is minor damage in the right foot as well (not complete range of movement but functional).  Brody can still walk and run and play.  It has not really slowed him down.  He has managed to adapt to the situation.  Some of the chemo drugs that Brody had to take also cause nerve damage.  So this was further exacerbating the situation.  Now that he is finished with chemo, his neurologist feels his nerve function will continue to improve rather than cycling between improving and regressing as he has been these last several months.  We have been doing exercises (physical therapy) at home with Brody for a few months now that helps to keep Brody's muscles range of movement working so that one day when his nerve function comes back his range of movement won't be limited due to the muscles in his lower calf and heel not being stretched and long enough for full range of movement.  We did these exercises for several weeks with Brody before he got fitted for a brace called an "AFO."  This brace holds his foot up rather than dropped.  He got to pick-out what style he wanted for the brace.  He picked a yellow brace with several cars and trucks on it and a red light on the back of it that illuminates when he's walking.  The plan originally was for him to wear this brace all the time once he got it.  But turned out that it really started to hurt and ache after he wore it for a few hours.  So we tried to have him wear it for a few hours and then take it off for a few and then put it back again.  He got to where he could sleep with it on for most of the night.  Then we had a follow-up with his neurologist.  We decided after discussing that he was not able to wear the AFO all day yet that maybe doing a series of casting would help Brody stretch out the muscles etc faster than periodic wearing of the AFO and make it so that he would be much more comfortable with the AFO sooner.  So Brody got his first cast on last Monday (the same day as his last chemo).  It is a regular blue cast.  Looks like he has a broken leg.  The cast was put on so that his foot is raised slightly rather than dropped like he usually has it. It does not pull it up as much as his AFO yet.  He will have this first cast removed on Tuesday and a new one will also be put on Tuesday which he will wear for a week.  The cast he will have put on Tuesday will raise his foot up farther than the one he has on right now.  He will keep getting casts removed and new one put on til we get him to where he gets better range to pull his foot up toward his face if he were lying down. Once that range is back from the casting, he will be able to wear the AFO hopefully all the time without it hurting.  Eventually, the hope is that his nerves will heal and he will no longer need the brace and will walk normally without it.  It is expected to be several months before this happens but likely within the next year.  It has been amazing how well Brody has adapted to his cast.  It runs and plays like nothing is different at all.  Kids truely are resilient. 

 

We are all looking forward to lots of fun activities and trips we have planned over the next several months.  There are so many things we want to do that we were not able to do when Brody was going through chemo.  We'll be sure to post pics and videos of us all enjoying some of these things.  This next year I really just want to focus on spending time together all as a family.  Time goes by so fast and kids just grow up too fast.  Before Brody was diagnosed I was working a lot of hours on building a new business, had just started a new teaching position at the University of Findlay College of Pharmacy, and was working part-time as pharmacist at Heartland HealthCare Services.  I was certainly working full-time plus,  plus between them all and rarely had much time with my family.  If I look for something good to come from Brody's diagnosis, I would certainly say that it has forced me to realign my priorities.  My family most certainly comes first, and really, it always has, but in the past I would often put in a lot of hours working and just planned on being able to spend more time with my family later.  Unfortunately there is not always a later.  None of us really know what is gonna happen from one day to the next.  Making sure I make time for family-time on a regular ongoing basis is now a normal part of my schedule planning.  There will still always be work to be done.  And really, most of the time, it really can wait.  Much of my work-time lately for my own business has been spent on training an Office Manager and setting up things so that if I want or need to take an extended time away from the business myself, things will still function just fine while I am away.  I still have a few more things to get in place before this will be the case but very soon I should be able to be away from the business for an extended period of time if I need or want to.  I was very excited about my new job teaching with the University of Findlay, College of Pharmacy.  However, after Brody's diagnosis I was not able to work as many hours as this position would require.  The University was kind enough to offer me a teaching position at a future date whenever I was ready.  However, I do not think that I would be able to dedicate the time to this venture for quite some time.  Right now, nothing makes me happier than time with my family.  Although I do enjoy teaching, there simply aren't enough hours in the day at this point.  My goal is to work as few hours as I need to work to help pay the bills.  I have been very fortunate that I have a very flexible job as a pharmacist for Heartland Healthcare Services as far as scheduling goes.  Everyone at this job has been extremely supportive of our situation and have allowed me to work pretty much whenever I can.  In addition, when Brody was first diagnosed several of my fellow co-workers donated vacation time or sick hours so that I would still receive a paycheck when Brody was first diagnosed and in the ICU and I was unable to work.  So many folks stepped up and did this that we still received a check from Heartland Healthcare Services through June (til after Brody healed from his major surgery to remove the tumor).  This helped us tremendously.  The support from everyone over this past year has just been absolutely amazing!  We are very lucky to have such wonderful friends, family, co-workers, and employers (and even folks we don't know praying for us). 

 

We will undoubtedly be very anxious for each of Brody's upcoming scans.  Unfortunately, rhabdomyosarcoma has a very high recurrence rate.  Overall survival is much lower following a recurrence.  Brody will likely get a CT scan every 3 months this next year and then every 6 months the second year and then once a year.  The longer we go without a recurrence, the less likely the next scan will show a recurrence.  His next scan after the one in a couple of weeks should be right after we get back from his Make-a-Wish trip to Disney in Florida.  Then his next one after that would be right after we plan to take a trip out west (and to California to visit family there).  Once Brody makes it five years without a recurrence, he will be considered cured of this cancer.  He will still continue to get lots of scans and tests at least once a year throughout his life though.  The chemo and radiation he has received increases his risk for other cancers. 

 

Again thank you to everyone for all of your support.  Don't know what we'd do without all of you. 

Week 40

Thanks for all the comments...

While Brody got his last chemo on Monday, he is still under treatment for a few more weeks. He goes in for labs tomorrow and may need blood again... not sure since he got blood last monday and he never did that before-- he has also needed platelets several times lately too so he may need one or the other this week some time... He will likely go back in for labs on thursday and then again next monday (week 41). Our dog Tori will be coming back home that week.. she lived with Trish's cousin near Columbus, OH for several months but was keeping neighbors up with her barking and so then moved to Trishs parents house near Lebanon, OH. Tori has visited several times when Brody's counts were up.

Week 42 is an eval week. Which means he will likely go in for a CT scan and probably labs one more time. When they do this he has to drink a contrast liquid so they can get good pics... he had problems drinking this in the past and the last time (about week 26 or so) he ended up getting it via an NG tube (a tube fed up his nose and down to his stomach)-- not sure which he hates more so we plan on letting him decide. We are cautiously optamistic that they won't see anything.

Beyond that this is what we can expect--

We have not got this from his doctors but Trish read that he apparently he has to continue his oral meds for several months (we both assumed he would stop them relatively soon)-- which means Nystatin (swish and spit 3 x per day) to prevent thresh (mouth sores) and Bactrim (antibiotic- to prevent pneumonia due his compromised immune system) twice a day on Fri, Sat, & Sun (we will likely be moving this to different days so his weekends are funner)-- and  we will likely continue his zofran for nausea-- a bit-- at least a few weeks.

There is always a chance for re-occurance. I don't like to think about odds or percentages because those are just numbers-- my reasoning is that for any one person, the chance of re-occurance is either 0% or 100%. I will say the longer he goes without it re-occuring, the smaller the chance that it will re-occur later on.

What that means to his treatment is that he will be screened (CT scans we assume) every 3 months for the first year, every 6 months for a while, and then yearly beyond that.

As most of you can imagine, this has been a trying year for our whole family. Everybody has been amazing in how they have dealt with all this-- Brody just being able to put up with all this and still being able to smile and laugh about most things, his Brothers doing all the little things to make him happy-- giving him his way without too much protest- Brody played the cancer card alot- when his Brothers wouldn't let him have his way. Our family and friends stepping up when we needed them. Our employers and co-workers being flexible with us-- I work a rotating shift (4 weeks of days, 4 weeks of nights)-- and I was able to arange my schedule so that I kept on our shift rotation (it gave me days off during the week) but did not have to work nights which made everything easier on us. Trish's employer let her pick her days pretty much-- she only worked their part time and but she cut back her hours even more when Brody got sick... there could be a thousand things I could list... she was scheduled to work Christmas but got it off...

While trying our patience (Brody can be ornery-- he likes to see how far he can push peoples patience at times) , this experience has made me appreciate the moments--every smile and laugh and every hug. I learned the only way I could face anything like this was one day at a time-- and in my case I focused on his treatment as a series of steps that had to be made in order-- down to taking his meds each day. With so much out of your control, I felt that each step was something I could control. Not sure if any of that made sense to anyone.

We will continue to write to the blog for a while-- but as his treatments taper off, our posts should too-- we do plan on having some fun the next few months and will be sure to post up pics and vids-- we have a trip to Orlando, a trip to Hilton head south carolina planned, and are trying to plan a trip out west too. 

The Orlando trip is going to be paid for by the Make a wish foundation. The Hilton Head trip is provided by a group called "Hilton Head Heroes" which will provide us lodging for a week down there-- we just have to get ourselves there. We will be paying for the trip out west ourselves-- just haven't worked out the details-- we had been waiting for my vacation schedule to be finalized.

Thats about it for now....

More later... Bill

Last chemo

Brody got his last chemo dose yesterday...we are still at the hospital but should be leaving in about 90 minutes or so... his nausea wasn't as bad as last time and he was able to start it earlier in the day yesterday... he hydrated faster then normal. He lost his lunch about 20 mins after getting it felt better a few hours later and tried to eat but couldn't keep that food down either... he had an uneventful night and got a little sick this morning but ate some cheerios about 2 hours ago and is keeping them down...

His hemiglobin is still kind of low and will only drop from here so they are giving him blood now.... it is almost done now and he is due for more zofran (nausea med) in about 15 minutes.... as long as he doesn't get sick in the next hour he will be going home by about 2 pm today.....

Typing on my phone so will try to write more later.

Bill