Brody's New Years Eve

Brody eating his favorite pizza Little Ceasers Sausage at Pizza Hut (where everyone else wanted to eat) after a trip.to the zoo today... temp got up to 55 today so we enjoyed the relatively warm weather.

Kid pile

Last week... the little girl is Lucy from next door and Brody's best friend.

Week 37

Brody is at the hospital for labs and on schedule... he needs blood again due to low hemoglobin.

We got here at 9:30 am and expect to leave about 5 pm... the boys are all here with Bill while Trish gets to work.... we were prepared for the wait and have the wii hooked up to a tiny screen on our portable dvd player, nintendo dsi's, a laptop, dvd movies, netflix, books, etc....

The boys had a good christmas... no complaints anyway...

Typing this from my phone so going to cut this short... looking forward to getting past our last chemo round on week 39.

Brody is home and feeling much better

Brody finally got to come home from hospital today.  Vomiting has ceased and Brody is eating again.  Yeah! Brody is  looking forward to helping bake cookies and make candy tomorrow. 

Week 36

Brody's nausea is persisting... he has managed to keep down some cheerios but he has been getting ativan alternated with zofran every few hours.... he is staying another night in the hospital and hopefully we will get out of here early tomorrow.... while he did have some nausea... he did sleep good last night other then the 2 times he got sick when he woke up to go potty. He is chilling watching a dora vid now and seems fine at the moment.

Hoping he tolerates it better next time....

More later....

Rough time with chemo

Brody has been very sick to his tummy with this chemo round.  Threw up multiple times despite aggressive efforts to prevent the nausea.  He is usually home by now but right now is still in the hospital until his tummy calms down.  He hasn't had any stomach cramps or anything for almost an hour so let's hope we are about to get through this. 

Chemo Day Again

Well, it's a big chemo day again.  Brody is sitting in infusion room playing Wii Donkey Kong Country Returns with his brother Geordi while getting fluids in preparation of getting his chemo later today.

Hopefully the nausea won't be too bad today. 

Brody will stay overnight tonight and into most of the day tomorrow.  Brody basically has this 3 week round and one more after that.  Just 6 more weeks to go to finish off the chemo.  Brody is doing very well and is looking forward to being done with chemo.

Santa came to the Dalton Christmas party

Brody was soooo excited that Santa came to the Dalton Christmas party.  He couldn't stop jumping up and down while waiting for his turn to sit on Santa's lap.  When Santa asked what he wanted for Christmas, Brody replied, "I don't know."  Brody has a "one-track" mind and all he wanted was Hot Wheels Criss Cross Crash which Papaw and Grandma had just given him right before the Dalton Christmas party since we won't see them again until after Christmas.  Santa said, "Well, I guess I'll just have to surprise you."  Brody said with utter joy, "OK!!"

Watch "Brody playing Criss Cross Crash" on YouTube

http://www.youtube.com/watch?feature=youtube_gdata_player&v=PMLDi6CGpEs

Blood and platelets

As expected Brody needed blood on monday and platelets today... we are at the hospital waiting for the bag to arrive.... platelets take about an hour to infuse vs blood that takes 3 or 4 hours... so hopefully we won't be here too late... especially since I have a dentist appt at 2.... more later.....

Bill

Sent from my DROID X phone

Going home after chemo

They put this up in the hospital between the time he was admitted and the time he was discharged.

Sent from my DROID X phone

Week 33

Brody got his week 33 chemo last night and stayed the night as scheduled... doing ok but did vomit once right after they gave it to him... He has been getting a 2nd anti nausea drug this time staggered with the first and has been ok since... it did knock him out and he has been a bit wobbly walking. He seems to feel fine but has no appetite... playing wii right now. He only woke up twice overnight at 1 am and 4 am... I didn't manage to fall back asleep after he woke up at 4... Brody managed to sleep til 9am.

There was a question a few posts back about what happens after he is done with his chemo in January... I reposted the response below...

+++
Sorry for the late response... We are not exactly sure, but from what we understand he will be monitored periodically for re-occurance... we are not sure how often.... Althouh his last chemo round is scheduled for Jan 10th (if he stays on schedule)-- he will need bloodwork done for a few weeks as he recovers. His last chemo is week 39-- however week 42 (Jan 31) of the regimen is listed as (EVAL)-- so possibly another CT that day... not exactly sure... as you can imagine it is hard too look out too far ahead-- we live pretty much day to day around here since all this went down.
+++

Really not much more to report...we expect his nausea and lack of appetite last another day or so.

Week 32

Tomorrow gets his week 32 treatment (vincristine only)... He ended up needing platelets when he went in on thursday for labs after getting blood on monday.

He has been feeling good and just ate a bunch for dinner.  More later...

Sent from my DROID X phone

Week 31

As expected Brody needed blood again thus week... at hospital 9 to almost 5 on monday... Brody did well again... he hung out with dad and we watched netflix on a laptop and dvds on a portable player... his counts should be coming up quickly now.

He goes back for labs on thursday and then labs and vincristine (chemo) on monday...

Mire later

Sent from my DROID X phone

Week 30

Brody continued his treatment on schedule this week. He was admitted on Monday and received his 3 drug chemo combo and stayed the night at the hospital with Dad. He did have a bit of a problem with nausea and vomited twice about an hour before he was due for his next zofran (anti nausea medicine) dose each time. It did not persist too much into Tuesday although he didn’t have much of an appetite that day. He did give us a bit of a scare while at the hospital  when he got a pretty good fever on Tuesday… it lasted about 4 hours or so and then went away as quickly as it appeared. We are supposed to take him to the hospital if he ever gets a fever above 101.5 and he was above this—he did leave the hospital on Tuesday night about 9:15 pm (we thought he might have to stay that night too)… we checked him every 2 to 3 hours the next 24 hours and it did not return (and he didn’t get any meds to mask it – Tylenol/motrin/asprin). We are very paranoid about germs around him and have no idea what was up with the fever that came and went so fast.

His appetite has not returned as fast as in previous weeks so we will see how this plays out… he had been eating pretty good the last 2 weeks before the last chemo dose and had been gaining some weight back.

He continues his treatment on Monday (week 31) with labs (and blood likely again), and his 1 chemo drug of Vincristine….

He will get Vincristine each week now till week 36 (3 drug combo on week 33 and 36) and then his final chemo dose will be week 39 (3 drug combo).

He will come in for labs at least once per week til week 42--- when he is supposed to be evaluated again.

I’m sure Brody will be very happy when Mom and Dad stop pestering him to take his oral meds anywhere from 3 to 10 times a day… (depending on where he is in his cycle of treatment).

The other 2 boys are doing pretty well too…. Homeschooling can be difficult at times but both Geordi and Jaden seem to be doing pretty well in their school work. As we mentioned previously, we withdrew the boys from the online school they were attending—while the curriculum was ok, we felt there was a fair amount of fluff and they were wasting time on stuff that was too easy and the boys seemed relatively bored with it.

Mom and our neighbor Barbie who has been helping a lot came up with a pretty good curriculum… Jaden’s reading skills are really picking up and he is already pretty good at sounding out a lot of words and is keeping up on his schedule of learning his site words. He has been doing well in his math too.

Geordi was already a good reader and good at math and we feel he is now being challenged in his curriculum and (most of the time) having more fun. He has been learning his times tables and making good progress. He does need to work on his writing skills somewhat. He can write pretty well but just doesn’t like doing it—the hard part is getting him to think of things to write…. He had a pretty easy time a few days ago writing about how he doesn’t like to write.

We do utilize a few web sites –

Raz-kids.com (was used in the online school the boys were attending)—it is a good reading site that we signed up for a personal subscription.

IXL.com—is a pretty good math site… it covers everything and also has skills organized by individual state standards… it could use some organizing.

Spellingcity.com – this is actually being used by the 2^nd grade at Whitehouse Elementary school where the kids will attend. The mom of a kid who was in Geordi’s class the last 2 years told me about it and I was able to get to his spelling word lists—it has spelling workd games and can test him too… in addition I was able to join the site for free and create my own lists for Jaden… So we have been putting all his site words on their too.

Our other bit of news is that Geordi got his cast off his broken arm a few weeks ago and had been wearing a brace… he was scared to remove it but finally did and his arm doesn’t seem to be bothering him anymore…

I think that’s it for us…

More later…

Bill

Enjoyed a trip to Pine Mtn State Resort in Kentucky and a visit to Bean Station TN

Brody has been having a good week this week.  He got blood again last Monday and went in for labs again this past Monday.  He did not have to get chemo last week or this week and has been feeling much better this week than he has in a very long time.  We decided to take advantage of this little break in his chemo regimen (this break is part of the regimen he has been following.  He's still on schedule) and we headed for a short trip to the mountains with Papaw and Grandma.  Papaw rented us a cabin for all of us to stay in for 2 nights in Pine Mountain State Resort in Kentucky.  The cabin was very nice, had plenty of room for all of us, and a great view.  Although the boys were a little worried that the cabin might be overcome by bears.  The boys have spent a lot of time in the evenings lately watching Bill play a Playstation game that is set in the old west and involves a lot of killing of Grizzly bears to sell for stuff you need in the game.  The bears in the game are very aggressive.  So the boys are a bit petrified of bears.  There were several signs in the mountains about the black bears that live there.  The boys wanted pepper spray and large sticks and for Papaw to have his knife before we could go hiking.  We didn't buy the pepper spray.  We convinced the boys that spraying a bear with pepper spray might just make the bears really angry.  But they made sure Papaw had his pocket knife and each boy took their time to find a mighty stick.  I think Papaw thoroughly enjoyed teasing the boys and scaring them by pretending to be a bear and growling and scratching at the cabin walls from outside the cabin. 
We enjoyed a mile hike to "chain rock."  We didn't see any bears on our journey but we did find a lost beagle dog who managed to find his owner before we left the trail.  "Chain Rock"is a large rock that has a giant chain to hold it from falling off the mountain into the town of Pineville, Ky below.  It was an awesome view on the hike to and at Chain Rock.  We also did a shorter hike to Pinnacle Overlook in Cumberland Gap.  The boys got to stand on Kentucky and Virginia at the same time on this hike.  They thought that was pretty neat.  They really wanted to hike to a spot where they could stand on Kentucky, Tennessee, and Virginia all at the same time but we decided not to do that on this trip because it had started raining and the trails were getting slippery and Brody had to be carried through much of the mountain hiking trails we had already done.  We'll have to come back on a future trip to do that trail.  Once it started raining we headed to Bean Station to visit family there.  We got to see Uncle Bill, Aunt Evelyn and cousins Chris, Tina, Christina and Hannah and Precious (Evelyn's black poodle).  The boys had a great time playing with Precious, petting Chris's horses and playing hide n go seek in the back yard.  This morning when we got in the van to head back home, Brody said he wanted to go to Tenessee again to see "the little black dog."  I had to tell Brody that hopefully Precious would come up at Christmas time to Ohio and he could play with her then.  Evelyn made us all a fabulous meal that we all really enjoyed.  I really need to learn how to make chicken n dumplins.
Well Dad (Papaw) is just pulling off the exit to Monroe, OH.  We will soon be to Papaw and Grandma's house where we will load into our van and I'll drive us the rest the way home.

The boys were on Alert for bears while hiking in the mountains

The boys with Papaw and Grandma at an overlook in Pine Mtn State Resort

The boys in the Smoky Mountains

The boys and I had a great time the last 2 days at Pine Mtn State Resort in Kentucky with Papaw and Grandma.

Corn maze last Sunday

Sent from my DROID X phone

Thursday

Just a quick update... as expected Brody needed another blood transfusion on monday... he has needed one almost every time 7 days after his 3 drug chemo combo... Trish brought him this time... stuck at hospital from 11 am til almost 7 pm...

Sent from my DROID X phone

Monday

Geordi homeschooling at hospital, Brody coloring.

Sent from my DROID X phone

Saturday

Not much to report... Brody did get another blood transfusion back on on October 4th.. the day he wasi supposed to get his ct... we were at the hospital from 9 AM til 7 pm first for labs, then waiting to do CT.. then deciding whether to do ct without contrast or not, then they finally started blood at 4 pm... and we got home just before 8.... not a fun day... then Brody went back again on tuesday with Mom for the CT.. they did the oral contrast and an IV one too... so I was glad at least they could get good pictures... Brody has felt well since then.

We have continued homeschooling but have withdrawn the boys from the online school they were attending. It was too difficult to keep up with the lessons as they were presented and we thought we could customize lessons closer to Geordi's math and reading... we are working out of workbooks and on a few online sites for reading... the kids like it much better as do their parents.

Brody goes in for his every 3rd week Chemo on Monday... that will be week 27 of his treatment... his last chemo will be delivered on week 39.

That's about it for now..

Bill

Sent from my DROID X phone

Brody's CT Scan Results

Brody had a CT Scan yesterday. Getting the scan done was quite the ordeal. He was suppose to have the scan done on Monday but he was too sick to his tummy all day (lots of nausea and vomiting) to be able to drink the contrast drink before the procedure. So they had him come back in on Tuesday and gave him another chance to try and drink the contrast drink. He was not able to. As soon as he tried he started to gag and dry-heave. So they ended up placing an NG tube to get the contrast drink into him. He was NOT happy about that at all. But he did ok with it though. And amazingly he managed to keep the majority of the contrast drink down (although he did vomit just a little bit of it even with the NG tube in place). He did great during the scan (laid perfectly still during it). Brody felt much better the rest the day after the scan and was extremely excited to be able to eat again. By the time he finally got the scan done he hadn't eaten for far more than 24 hours and had been vomiting on top of that. He ate a bacon, egg, and cheese hot pocket after the CT scan and promptly asked for yet another one as soon as he had finished the first one. He also was drinking, drinking, drinking and drinking afterwards too. He was one hungry and thirsty little boy and fortunately his belly finally decided to cooperate and let the poor little guy keep something in him.

Brody's doctor called today with the CT Scan results. He said that the lymph node that was enlarged prior to his surgery to remove the tumor (lymph node right next to where his tumor was) is still enlarged. (The surgeon that removed Brody's tumor tried to remove the lymph node during the surgery to remove the tumor but was unable to do so because Brody became too unstable during the surgery and was bleeding a lot. The surgeon also thought that at the time the lymph node may have just been enlarged because of "fighting the cancer" rather than it containing the cancer and so could not risk to keep trying to remove the lymph node and also could not biopsy it either). Brody's oncology doctor said the good news though, is that even though the lymph node is still enlarged (they expected it to shrink if no cancer in it), the lymph node is still the same size as it was prior to Brody's surgery. Also, when Brody's tumor was removed it was sent to pathology and it came back that the tumor was all necrotic tissue and there was no live identifiable tissue remaining. Essentially all the tumor cells were dead. So Brody's oncology doctor feels it is very likely that the lymph node does contain the cancer cells but since it has not grown he suspects that, like the tumor cells that were removed surgically, that it is quite likely that the cells in this lymph node are all dead. So the plan at this point is to continue with the same chemo as he has been receiving. His last chemo treatment will be on Jan 10th. Brody will get another CT Scan in 12 weeks (Jan) to verify no further enlargement of the lymph node. After the chemo is complete, he will also keep getting regular scans to keep checking that nothing is growing back or lymph node getting larger.

Riding Miller's Ferry for trip to Put in Bay, Ohio with Papaw, Grandma, Mommy, Geordi and Jaden

Camping

Camping recently at Maumee Bay State Park

Wednesday Sept 29

Once again, I apologize for the lack of updates-- seems like we don't get a free moment.

Brody has been doing pretty good overall. He was admitted overnight on monday for his every 3rd week chemo. He did have some issues with Nausea/vomiting while we were at the hospital but thankfully they passed quickly-- and last night he was running around playing and he slept well overnight. The nausea from this round usually persists about 48 hours (til this evening) so we will stay on top of his anti nausea medicine.

Jaden came down with a slight fever and sore throat last week so he was shipped down to grandma and grandpas house last week and will be back tomorrow.

This is week 24 of his treatment- he will be skipping his vincristine (chemo drug) the next 2 weeks according to his treatment plan but will still have to go in for labs each week and he will likely still need to get blood next monday (he has needed blood like clockwork almost every round 7 days after his 3 drug chemo round)-- I believe he has only not needed it twice.

Not a lot more to report...

Bill

Watch "Homeschool Recess Break at the Park" on YouTube

http://www.youtube.com/watch?feature=youtube_gdata_player&v=P-jANkZ6JMM

Tuesday, Sept 14

Once again, I apologize for the lack of updates but we have been extremely busy with Brody's treatment and Geordi and Jaden's homeschooling.

Brody is doing relatively well, he was admitted last Tuesday overnight for his 3 drug combo chemo and did pretty good however his Nausea seemed worse then the last few rounds so he had problems with his oral meds. He is also having a bit of persistent diarhea from his radiation therapy. It seems to come and go. His Nausea has also been generally bugging him lately too so he has been getting his zofran (anti nausea medicine) often.

Right now, Brody and I (Bill) are at the hospital getting his 1 drug chemo (Vincristine) and his labs done. They just told us he needs blood again so we will be here for the afternoon again. It is 11;15 now and they just ordered it so it will take about an hour for it to get up here and then about 3 1/2 to 4 1/2 hours to infuse it.

Our other bit of news is that Geordi learned how to ride his bike without training wheels a few weeks ago. We have been behind in teaching him this year but he picked it up pretty fast.... however he took a spill last Sunday and broke his left arm. So gets a bike break (nice pun Bill :) ) for about 6 weeks or so... it was pretty painful but is feeling better now. Luckily it was his left arm and he can still write for school.

Geordi has been doing pretty well at school... his reading and math skills are pretty good. They placed him in a pretty high reading level (reading lessons are seperate from his general school lessons)-- however the reading lessons involve a fair amount of writing lessons too and his writing skills are not as good as his reading... so it takes us a long time to get through each of his reading lessons and I think he is starting to not like reading now because of this... the math lessons he has had so far are well below his math skills so we have been working with him a bit outside his school lessons.

Jaden is doing well in his Kindergarten lessons. Our Neighbor Barbie has been working with him on these while we work with Geordi-- this has helped alot. Brody and her Daughter Lucy do some of the lessons with him (They are both 4).

Not to be outdone, Jaden is now riding his bike with out training wheels now too-- It seems like Jaden has always been right behind Geordi in doing things physical things like this-- he walked and talked early and developed other skills early so he can do them with Geordi... other then his school skills, he can do almost everything as well as if not better then Geordi.

One of the difficulties of homeschooling is the boys behavior-- they don't feel like they are at school so have acted out or lose interest in things fast-- Trish came up with a reward system that so far is working well... Each of the boys and Lucy get 4 playing cards each day... they lose 1 of them for bad behavior. Trish bought some prizes that they can trade the cards in for... the more expensive ones cost more cards (the cards are worth about 33 cents each)... they are displayed in a glass front cabinet in our kitchen so they can see them all the time.

We have expanded the reward system some what in that they can earn extra cards for doing extra work (picking up basement playroom) etc... we have also been rewarding Brody with cards for taking his meds or getting a needle poke.... this has eliminated alot of the stress for Mom and Dad in giving him his meds... he will get the meds no matter what (we don't give up) but he won't get the card if he argues or is extra difficult... so far so good... and is well worth the cost... we tried paying him a while back but he doesn't understand the money concept very well yet.. the cards and prizes are tangible.

Really thats about it... we have been very busy.... and will continue to be for the forseeable future... this is Brody's 22nd week of his treatment and his last chemo is delivered on week 39.... if he stays on schedule that puts us at Jan 10th and then a few weeks to recover from that....

Once again, thanks for everyones words and assistance we have gotten since Brody's diagnosis.... every bit helps...

Bill

Sorry for the lack of updates... we have been real busy with starting home schooling and the boys went camping last week wth Trish's parents... Brody is doing well and has been doing kindergarten lessons with Jaden.

Will write more when time permits.

Brody getting yet another blood transfusion

Sent from my Droid Phone

Monday

Brody is getting his vincristine chemo now. His red blood cell count is low so he is getting blood transfusion again...  i think this is 8th one not counting the blood he got during his surgery.  Geordi and jaden aren't likely starting school today as it takes 3 to 4 hours to infuse the blood after it gets up here.  He is looking and acting normal so we are once again surprised he needs blood this week.

Sent from my Droid Phone

Sunday

Brody has had an ok week. He has had ups and downs (nausea and some diarhea)  but overall been feeling pretty good and has been eating more.  If our scale is right he has gained back a pound.

He has been kind of stubborn taking his oral meds (likes to stress mom and dad) but gives in eventually if you stay on him.  He likes to show off to others and his latest thing is taking meds without his chaser (usually milk or water)...  his zofran he takes for nausea doesn't taste bad so this is no big deal...  last night he impressed me by taking his bactrim without a chaser...  he drank the whole 1 1/2 teaspoons right down...  the bactrim isn't bad to drink. Ut has a bad aftertaste....  i was very impressed and of course proud of him for doing this however i was scared he was going to vomit it up...  but he kept it down.

Geordi and Jaden start their home school tomorrow. Hopefully that will go smoothly.

Not much else to report.

Brody goes in for his labs and outpatient chemo tomorrow also and hopefully he won't need blood so we can get back home for school in a timely manner.

Sent from my Droid Phone

Tuesday morning

Brody got his chemo yesterday and is waiting to be discharged.  His diarhea has returned probably from all the hydration via iv he gets.  The chemo drugs cause constipation so i hope it resolves quickly...  we thought we were done with it. 

We had a good night other then the iv making him need to pee every 90 minutes or so...

Brody is watching spongebob squarepants right now and we are hanging out waiting for our discharge orders. We should be out of here before lunch.

Not alot left to report....  more later

Sent from my Droid Phone

The Brodinator

Sent from my Droid Phone

Done with radiation therapy

Brody had a rough time the last 3 days of radiation.therapy..  on Monday the verced didn't help in the morning,  he was scared and couldn't stop crying so could not lay still in enough to get his treatment...  he came back in the afternoon and did fine.

Tuesday he did great and it went without a hitch.

Wednesday he got scared again but he settled down eventually and got his last session done.

The side effects will persist a week to 10 days but he is much happier getting a good nights sleep...  he stayed up late last night and slept in with mommy til almost noon today.

He starts another chemo round monday and we will be spending the night in the hospital again.

Not much else to report..  his weight has dropped a bit with the radiation therapy but his appetite seems to be getting better.   He had 4 slices of french toast (no crusts)  for breakfast and a 6" subway turkey sub for lunch today.

His weight is back down to about 33 pounds...  hoping he gains some back quick.

More later...  hard to type from my phone

Sent from my Droid Phone

Sunday

Brody ended up not needing more blood on Thursday so we were in and out of Toledo children's hospital relatively fast on Thursday.  We played some wii while waiting for blood results.

Three more radiation therapy sessions left.  The verced he has been taking is having less and less effect on him so we will be bumping the dose up a bit for the last few sessions. He has been a trooper through all this.....  we will be happy to put the early morning appts behind us.

He goes back for labs tomorrow (Monday) after his radiation but his levels should all be coming up....  he has been eating somewhat better the last few days....  his weight had dropped a bit with the radiation therapy.... he has been craving subway subs lately and luckily there is one about a mile from our house.

Sent from my Droid Phone

Pic of monitors we watch Brody on during his radiation therapy treatments

We can't be in the room with Brody during his radiation treatments nor can anyone else but we can watch him on the monitors and talk to him through an intercom.

Brody happy to be done with one more radiation treatment

THE TRANSFORMER

Pic of radiation therapy machine which Brody thinks of as a friendly Transformer that rotates around him and kills his cancer

Brody getting ready for radiation therapy treatment

Brody getting ready for radiation therapy treatment

Brody needing blood again

Yesterday Brody went into Flower hospital at 6:45am for his radiation therapy and then we went to Toledo Children's Hospital to get his once a week labs done.  Brody's hemoglobin came back at 5.6 which is extremely low.  His doctor had the nurse do another blood draw and send it to the lab again to be sure it was correct.  The result came back the same so Brody had to stay the rest of the day to receive blood.  He goes back again on Thur for repeat labs and most likely more blood.  We were really surprised he needed blood again this time since he just didn't look as pale as usually does when he needs it and he seemed pretty energetic yesterday morning too.  Brody woke up and started walking first thing yesterday.  Usually he has to be up for awhile before he's willing to walk on his bad leg.  But not yesterday.  Today he has been walking much better than he has been too.  Maybe his leg is finally getting better (not hurting so much) and he's just so excited about it that he seems more energetic than he would be otherwise.  Anyhow, I'm excited that his leg is bothering him less. 

The radiation therapy has been causing some significant diarrhea for Brody.  He has had some pretty painful cramping and gas pains and his bottom is really sore.   He has been handling it all way better than I could.  The pains have also made Brody not feel like eating very much at times as well.  Fortunately though, the diarrhea isn't constant (but frequent and sudden) and he has some times when he feels ok and he eats and plays. Fortunate also that he has just 6 more radiation treatments to go now. 

The last few weeks have been very hard at times but we are greatful that they are behind us and we are nearing the end of radiation therapy. 

Brody is one tough, brave little boy. 

Brody enjoying his swimming pool

http://www.youtube.com/watch?v=xn8v2ukWD1M&feature=youtube_gdata

Geordi, Jaden, and Brody on favorite ride at fair

http://www.youtube.com/watch?v=ZsX3k8ZcN7g&feature=youtube_gdata

Enjoying the Fair

ENJOYING A RIDE AT THE WARREN COUNTY FAIR

Brody enjoying a pony ride at the African Wildlife Safari Park

Swinging last night with his buddy Lucy

Sent from my Droid Phone

Sunday August 1st

Once again, sorry for the lack of updates. We have all been very busy and seem to be tired alot-- we aren't used to the early schedule.

Brody has done well with the Verced for his radiation therapy-- it makes him a bit loopy but very co-operative... He has now completed 15 sessions and has 8 to go.

He had his 3 drug round of chemo last monday and did well again managing his nausea... especially since his radiation therapy causes it too. We were in a bit of a conundrum this past week... the Vincristine for his chemo causes constipation while the radiation therapy causes diarhea... for Brody at least, the radiation therapy wins in this head to head battle... although the vincristine helped lessen the severity of it.

He hasn't had much of an appetite lately-- but has been good about taking all his meds (after a bit of a fight for every one to stress out mom and dad).

We have been managing some dips in the pool and a few trips out to Maumee Bay State park among other things-- so it hasn't been all treatment.

Geordi and Jaden are getting ready to start their home schooling-- we signed them up with TRECA digital academy... and it is done online with the aid of a printer and scanner-- they were provided with loaner computers (Macs) and each a printer and scanner... they are both excited to start but I'm sure that will wear off soon... waiting for a few ethernet cables to arrive--- they have taken over our office for now.

Really, thats about it for now... we are patiently waiting for the radiation therapy to be over

Friday morning

Sorry for the lack of updates this week....  I  (Bill) have worked a lot this week and with the early mornings re pretty tired.  Brody just finished his 10th radiation treatment....  the verced works very well after  he finally takes it....  doesn't like the taste of it at all.  It works fast and within 10 minutes he acts like is drunk...  he is very co-operative though and does fine...  the effects wear off after an hour or so.

He has been taking naps every day.

Brody is going down to his grandparents later today and i'm sure he will enjoy the few day break...  he  his treatment on Monday as well as does another chemo round Monday too.....

10 radiation treatments down.....  13 to go.

His only side effect so far has been a bit of diarhea

Thats a out it....  more later.

Bill

Sent from my Droid Phone

Saturday

Brody stayed awake again for his radiation therapy yesterday but he was difficult and the staff at the hospital have to get the things out to start accessing his port before he will agree to stay still actually go through with the radiation therapy-- this is kind of a trick he uses on Mom and Dad to be difficult... he will refuse to take an oral med until we go to get the syringe to squirt it in his mouth... he will usually take it before we get back with it... does the same thing for the nystatin (swish and spit)-- we have to go get the swabs before he will do it....

Because of this they will be keeping him with the early morning appointment with an anestesiologist there just in case... as if there is difficulty with him later in the day it will throw off the schedule for other patients getting their therapy.

They did write a prescription for versed-- this drug produces a sleepy effect and also is for anti anxiety-- it also will produce a short term amnesia effect so he likely won't remember the procedure.

Anyway, he did earn another Thomas train yesterday for "finally" doing well.... I got to watch him do it over a monitor for the first time and he did really good... just moved his eyes and his mouth a bit-- the entire radiation session (after they get started) lasts less then 10 minutes.... I imagine it is scary to a child with all these big things moving around him with nobody else in the room with him... I was very proud of him for doing so well.

They radiation oncologist finished planning out his therapy several days ago and Trish just told me yesterday that they will only be doing 23 sessions total (rather then the original 30-- 6 weeks, 5 days a week)... with 5 down he has 18 left to do... will finish up if all goes as planned on August 11th.

We do have some bad news though... apparently to fully treat the tumor "bed" they will severely have to radiate his left kidney-- because of this they expect him to lose about 80% of the kidney function in this kidney-- a person can live with just one kidney-- but we obviously don't want to lose function in his only spare for his right one..

Really thats about it... we have been pushing zofran (anti nausea medicine) on him all week but he hasn't seemed to really need it... we missed a dose here and there and he seems to feel fine... apparently the nausea effects will get worse with the more sessions he has... hopefully it won't be too hard on him. Other then the referred pain in his leg, he seems to be in good spirits most of the time and has been having fun getting spoiled.

Thursday

Brody has managed to stay awake for 2 radiation therapy sessions now.... we still prepare him as if he were going to be put under (no food or water and numbing cream on his port) if he can do it again tomorrow they will schedule him for a later appointment and let him eat ahead of time...  be a lot easier on everyone.

Brody has been earning some toys with his bravery...  mom took him to the African wildlife park after his treatment yesterday and he got super smash  brothers for wii yesterday and a few other things.

He was less scared today then yesterday...  hopefully he can keep it up.....

More later

Sent from my Droid Phone

Radiation therapy started

Brody had his 2nd radiation therapy session this morning.. he was put under anestesia for it and it takes him a bit to wake up.... the actual time he was in there for it was less then 30 minutes it takes him about an 45 minutes to an hour after to wake up and they let him leave.  It is hard for us in that we have to get up at 6 am to be here by 7.... Trish has to be up by 5:15... she is really not a morning person... so far, so good.....

This afternoon we will be going back to the radiation therapy room to practice lying still.... if they are confident he can do this they will forego the anestesia and we can be in and out of there quick and he won't have to deal with them poking him or recovering from anestesia..... hope he can do it.... 28 sessions to go...

More later...

Sent from my Droid Phone

Sunday

Brody has been doing both good and bad this week. He did real well managing his nausea this chemo round. As usual, he didn't eat much of anything for about a day and a half. His appetite came back pretty good on Wednesday. He didn't vomit at all for the first time (his first 2 days after the 3 drug chemo is usually rough for him) He has been complaining of leg pain intermittently and a lot of the time it hurts him bad enough he won't stand on it. We believe he is getting some referred pain from the nerves up near where they did surgery… the pain is in his left calf which is the same place it hurt when he was initially hospitalized in march. We are hoping it will resolve itself but if it continues til Monday we will mention it to his doctor on Monday. We did all go swimming in the pool on Wednesday and Brody and his buddy Lucy kept wanting to climb up the ladder and jump into the water with me catching them—it wasn't bothering him at all when he did that. It is not consistent pain at all.

He was supposed to start his radiation therapy on Thursday but they pushed it back to this Monday so the radiation oncologist could do some more planning on how they will irradiate the area. We are not looking forward to the radiation therapy. He will have to be sedated if he cannot lay perfectly still and he did not seem to tolerate the anesthesia well (he had nausea that night) when he was put under for his planning appointment. That and the radiation therapy will cause nausea and lack of appetite. He will be getting the radiation therapy at Flower hospital (he has been treated up til now at Toledo hospital) and will have to be there before 7 am on Monday thru Friday for the entire cycle… we will have to get on a much earlier daily routine which is difficult in the evening when it doesn't get dark til 9 pm. I'm (Bill) is the only one that wakes up that early on a regular schedule for my job.

While Brody is getting the radiation therapy (at least 5, but probably 6 weeks) he will not be doing his weekly Vincristine (chemo) that he normally does as an outpatient. He does have to go and get blood drawn on Monday and he will get another blood transfusion if he needs it—he has needed it the last 3 times he got this chemo combination so the likelihood is high.

That's about it—as usual he has been kind of stubborn about taking his meds but has been doing it and has been keeping them down—he just likes causing stress for Mom and Dad…

Sent from my Droid Phone

Happy 4th

Brody had a pretty good day... played in the pool and waterslide.... feel pretty good.

He resumed his chemo today.... nausea should be hitting any time now.

Sent from my Droid Phone

Playing Mario on DSI's

Brody continues to improve. He resumes his chemo on monday (he will be admitted overnight) and starts his radiation therapy on thursday....

Sent from my Droid Phone

Brody's home and doing well

Brody got to come home from the hospital Tuesday evening.  He has been eating well and contuing to feel better each day.  His left leg is still a little weak.  At times he does not want to put any weight on it and when he does he walks with his left foot pointed outward.  But he can walk and he has started to work on pointing the left foot forward.  I think he will walk better with time. 

Brody had a fun day yesterday.  Brody and I went to the African Safari Wildlife Park with my friends Carolynn and Marissa.  We got to feed the giraffes.  Brody loves to go there and feed all the animals but especially the giraffes.  Brody kept asking to go back again today too but I told him we needed to go pick up his brothers from Papaw and Grandma.  He decided seeing his brothers again was even more exciting.  Brody really missed them. 

We are all back home again and looking forward to enjoying the upcoming Holiday weekend.

Thank you again to everyone for all your prayers and wishes.  They seemed to have helped.  Brody is doing very well.

Thank you again

Brody is home

Sent from my Droid Phone

Going home later?

Brody is doing better and better. He hasn't had any pain meds since last night and managed to walk around ok. The physicians assistant from surgery dept thinks he is ok to leave.... surgeon has to ok it and will be by later to check him out.

Yesterday he watched a few pixar movies and played in the playroom. Eating and drinking ok.

Sent from my Droid Phone

Solid food

He was cleared for solid food tonight. He had some pieces of orange, few bites of cake, chicken noodle soup, and a couple bites of cookie... drank some lemonade. He took a few more walks.

Sent from my Droid Phone

Playroom

Sent from my Droid Phone

Playroom

Sent from my Droid Phone

Brody walked to play room

He walked with us holding his hands about 100 feet and back... stopped to rest a few times on stool. We were steadying him but not supporting him.... he took a few steps without us holding him at all.

He is passing some gas so they cleared him for clear liquids for now... he had some broth, popsicle, and lemonade... so far so good

Sent from my Droid Phone

Out of bed

Still sore... needs alot of help to stand and walk

Sent from my Droid Phone

Brody is making progress

Brody just got his NG tube out and took a short walk (4 steps).  He understandably did not enjoy either event but he's making progress. 
We also just got some exciting news.  Brody's pathology report on the tumor that was removed came back.  It stated that the tissue is all necrotic and no live tissue was identifiable.  Yippee! Very encouraging news!  The chemo treatments have been doing excellent job killing Brody's cancer. 
Brody is resting after his walk watching Max and Ruby right now.  It's a new one for him too.  One of the ICU nurses here went out and bought it for him.  Brody is a Max and Ruby fanatic and Mom really appreciates this gift too since she'll get to see some different episodes than the ones we've already seen hundreds of times already. 

Friday evening

Brody is doing pretty good still. He is down to 3 tubes now.  He is well enough to leave the PICU but they don't have a free room on the oncology wing and they dont want to put him in general pediatrics... so will spend another night in the picu.... he looks good.... is alert and watching some vids.... he says he is hingry but they don't want to let him eat until hey are sure his gi tract is working... he still has an ng tube (nasal gastro i think is what it means) it is slowly sucking any fluid or mucus from his stomach... they let him eat ice chips but it is sucking the water right out.... fhey can clamp it for a while and give him tylenol through it.... he is getting some morphine every few hours too.

Trish went home to sleep about 6 or so.... i told her not to come back til at least 2 am.... he hopefully will have a restful night and let me sleep.. i got a few naps in today.

He is ready to leave although his body isn't....

Sent from my Droid Phone

Brody is now off the ventilator... doing great... his throat is sore so he doesn't want to talk but other then that is doing fine... unless he takes a step back he should be getting out of PICU later today

Sent from my Droid Phone

Thursday night 2:30 AM

Brody is doing well but is still in the PICU on ventilator helping him breathe and is getting a constant IV drip to control the pain and help him sleep. They are keeping a close eye on him and either Trish or I have been at his bedside since he was brought in here. Trish went home fore a few hours to eat and pack some stuff.... I have a backpack already packed with 2 days worth of stuff.... she got back here a little before 9 pm. Trish let me sleep from about 9 pm to 1 am and after I got some coffee and a bite I let her lay down about 1:40... hopefully she will get a good nights sleep... neither one of us slept much the night before his surgery.

He does wake up momentarily when they disturb him (to clear his vent tube, turn him on his sides a bit, and sometimes when they take his vitals)-- he is awake enough to be scared so we try to talk to him to keep him calm (tell him the truth-- how he is doing great, they took the tumor out and that we need to keep the tube in his throat til tomorrow)  ... he can't talk with his vent tube but can shake or nod his head with yes or no questions.... he goes back to sleep pretty quick after we calm him down a bit. Trish's parents (Gary and Karen), Brother (Danny), Sister (Julie), and Niece (Ella) are staying with the boys at our house tonight.... they all got to see him briefly in the PICU before they went home after he got up here...

While we hate tubes (after his last stay here) he has quite a few in him now.... I count him having 7 tubes (IV in each arm, his chest port is accessed, foley tube, and his vent, gastro tube as well as one other small one going into his mouth that I'm not sure the purpose of... as well as heart/breathing sensors, pulse ox sensor and BP cuff.

They plan on taking him of the ventilator in the morning some time. He seems very stable-- heartrate, blood pressure, oxygen, and respiration are all good.... they are obviously keeping a close eye on him.

We are hoping his surgery recovery is quick and uneventful and he is well enough to leave the PICU soon.... while we a grateful for the excellent care he gets here... we obviously want him well enough to not have to be here.

He has been moving both his legs pretty well (kicking off a blanket)-- I was a bit worried about them working near his nerves going to his left leg-- the tumor was attached where there was alot of stuff-- (vein/artery going to his left leg, ureter, and some nerves...  the Surgeon took his time and hopefully got it all.

The removed tumor will be examined by a pathologist and they will see how much if any of the tumor is still cancerous or if it is all now just dead tissue (killed by the chemo)-- if it is all dead then this improves his pronosis but will not affect his treament-- he will keep on the the scheduled treatment regardless... which will take him till the end of the year and possibly early into next year.

Once again Brody has a very proud dad-- he has been such a trooper through all of this... and for the most part has made it easy on his Mom and Dad.

More later...

Brody settled in the ICU after surgery

Brody is out of surgery

Brody is doing good.  He is out of surgery and will soon be transferred to the ICU.  He is on a vent right now but expect it will be pulled tonight or tomorrow.  He also has a nasogastric tube and had lost a lot of blood toward the end of his 6 hour surgery.  He received 600cc of blood (a lot for a little guy).  They were able to grossly resect the tumor (think they got all the tumor out but were not able to remove a margin around the tumor).  The tumor was in a very difficult place to remove.  His ureter, vans deferen, pelvic veins and arteries were all intimately involved with the tumor (tis the reason they could not cut a safety margin of tissue around the tumor).  As they were removing the tumor they observed Brody's left leg twitching so these nerves (and likely others that control bowel and urination for example may be involved).  It is possible Brody may have incontinence issues due to inflammed nerves from the surgery which if it does happen will hopefully resolve with time.  His left leg may also be weaker if those nervea were affected.  The surgeon placed metal clips around the area the tumor was in to mark clearly for the radiation oncologist where the tumor was when he starts radiation therapy.  After Brody heals from the surgery he will undergo 6 weeks of radiation therapy along with the chemo.  And then another 15 weeks of chemo after that before he is finally finished. 

We should be able to see Brody in a few minutes.  Will send more updates later.

Brody doing well in survery so far

The surgeon just had the nurse call out to the waiting room to let us know that Brody is doing well but the surgery is "tedious" and they are patiently still working on Brody.

Brody and his pal getting prepped for surgery

Brody's surgery date moved up to Thur AM (June 24th)

Multiple surgeons are in agreement that Brody's tumor is resectable and they would like to remove it sooner rather than later.  So Brody's surgery date has been moved up to this Thursday (June 24th) at 9am.  We will be meeting with the surgeon on Wed at 4pm.  We have not been told any details about the surgery yet.  We of course have many questions that hopefully our surgeon will be able to answer for us on Wed. 

Surgeon says Brody's tumor is resectable now

Brody's oncologist called today to let us know that she consulted with one of the surgeons today.  This surgeon says Brody's tumor is resectable.  However, the oncologist is also going to get a second opinion from a different surgeon who will be working this weekend.  She plans to confirm the tumor is resectable with this second surgeon on Saturday and call us to let us know.  For now though, Brody's surgery is scheduled for June 28th.  Brody was scheduled to start his next round of chemo on Monday.  The next round will be postponed til after his surgery (assuming the 2nd surgeon concurs that Brody's tumor is now safely resectable).  Being able to remove the rest of the tumor before Brody starts radiation therapy greatly increases Brody's chances that he will one day be cured of this cancer.  But obviously the surgery needs to not be too risky also. 

We plan to make the most of Brody's week off from chemo before surgery. 

Brody enjoying the hot day in his swimming pool

Brody's CT scan results so far

Brody had a CT scan on Tuesday evening.  The purpose of this scan was to see if the tumor has strunk to a size small enough to operate on.  Brody's oncologist called to let us know that the tumor is indeed much smaller than the last scan and that the surgeon will be reviewing.  However, the surgeon is in surgery all day today so the oncologist and surgeon will not be able to review and discuss it together til tomorrow.  The oncologist plans to call us tomorrow to let us know the next steps.  Surgery, then more chemo and radiation, or no surgery and start radiation with continuing chemo or continue more chemo and wait to do surgery and radiation after further shrinking of tumor.  The size of the tumor is now 4cmX3.3cmX4.5cm.  At the scan prior to this one it was 4.9X5.2X7.  And the one before that it was 7X5.3X9.  So anyhow, it' s definitely smaller but we don't know yet if it is small enough to be surgically removed.

Going home

Brody's doctor just said he can go home.... I'm letting him sleep in... as soon as he wakes up they will remove his port access and we are out of here.
He slept good again last night other then having to pee a few times because of the iv....
Sent from my Droid Phone

Brody is doing better and will hopefully be able to leave the hospital tomorrow

Brody has been feeling much better today.  Nausea has subsided, he's eating again, belly doesn't hurt anymore and he no longer has a gastrointestinal obstruction.  He received another blood transfusion today too and he just looked and felt so much better after.  He's still getting potassium and IV fluids too.  The IV antibiotic was stopped since he has had no fevers whatsoever through this episode.  He will get labs again tomorrow morning.  His doctor suspects he may need platelets tomorrow.  Anyhow, Brody is feeling tremendously better and we are so thankful and relieved to see him returning to his usual happy little boy.

Brody had a rough time with his chemo this week

Brody went in to the hospital on Monday this week to get one chemo drug for this week (Vincristine) and labs done.  He did well on Monday and his labs came back OK on Monday.  But on Tuesday he was very nauseous all day and was throwing up everything he tried to eat or drink.  He was also very tired for most of the day.  No fevers though.  Brody tends to have a lot of nausea on the weeks that he gets 3 chemo drugs but this usually is not as problematic on the weeks he just gets the Vincristine.  So all of the nausea and vomiting on Tuesday was very surprising and upsetting too.  Then around 6:30pm on Tuesday he began to periodically start screaming that his belly hurt and then it would suddenly just stop hurting.  Around 10:30pm though Brody started screaming non-stop that his belly hurt and that he wanted to go to the hospital.  At 11:00pm I left with Brody for the hospital.  He was screaming and crying in agony the whole way there and throwing up too.  The pain continued once we got there too and kept going til about 3 or 4am in the morning.  Once we got to the hospital, Brody was quickly admitted and given a room in the pediatric oncology wing.  A Hospitalist promptly examined Brody and ordered an X-ray and labs.  A partial gastrointestinal tract obstruction was observed on the X-ray.  Brody was placed on IV fluids and Zofran (nausea medicine) right away.  The doctor also wrote and order for morphine for Brody too.  Fortunately, shortly after this though Brody's belly pain just finally stopped.  Brody's oncologist came in early in the morning to check on Brody.  She told us that Brody had likely experienced a side effect of the Vincristine.  It was likely that he had developed paralytic ileus (paralysis of the intestines).  Brody was also getting dehydrated because of the nausea and was not able to keep down fluids.  Nausea, vomiting, dehydration and paralytic ileus can cause low potassium levels.  Brody's intestines now seem to be moving (thank goodness!) But he does still have low potassium levels (very low potassium can cause very dangerous heart arrhythmias).  So Brody is still at the hospital right now receiving potassium, IV fluids, Zofran (nausea medicine), antibiotics (in case the ileus was actually caused by GI infection instead), and all his usual medications.  Brody also needs to produce stools before he will be able to leave the hospital.  His bowel sounds and symptoms are being regularly monitored.  Anyhow, Brody is feeling far better than he was last night but still needs to make some improvements before he can come back home. 

 

This evening Geordi and Jaden seem to have started to develop yet another cold.  It could be allergies too.  I'm not sure.  But to be on the safe side, Geordi and Jaden will be heading back to Grandma and Papaw's tomorrow morning til we can be sure they are not sick.   It seems that since Brody has started chemo that Geordi and Jaden have been more frequently sick than ever before in their lives.  I don't understand it.  We're obsessive about germ control around here.  Amazingly though, Brody has managed to not catch any of his brothers' recent aliments.  Hopefully this holds true this time. 

Storms tornadoes

Not sure if anyone was worried about us but we are all fine...
Some severe weather came through saturday night... we had tornado warnings about 10 pm saturday night ane again about 2:30 am.... we went down to our basement 2 times til the warnings cleared... no damage at all at our house but there were some storm cells showing rotation very close to us for the first warning.

The area south east of toledo got hit pretty hard..

You can read more about it here.... http://www.wtol.com

Brody gets his one drug chemo today.... hopefully no transfusion this round.... which takes several hours to do.

Sent from my Droid Phone

We had a fun day in Port Clinton Ohio today.

At the river after chemo

They let Brody come home about 1 pm... and we went to Sidecut Metro Park near the Maumee river... about a 10 minute drive from our house... Brody feels pretty good but is a but nauseous

Sent from my Droid Phonethe

Tuesday Evening

Brody is napping now... he has been at the hospital all day (got here about 8:45 this morning)... it is now 5:15 and they are just now starting his chemo. I'm thinking the holiday caused a big back log for just about everything today. He got his blood drawn pretty early but the results were slow coming back-- they were ok which means he can be admitted to a room-- admitting was backed up and it took a few hours to get admitted. Finally it took a long time for the chemo drugs to get back up here after they were ordered so I'm guessing the pharmacy was backed up as well. So he will likely be here til about 6 pm tomorrow night.

Trish is going to try staying the night with Brody this time. She is in for a long night as with the fluids they push with the IV he will need to pee every 2 hours (pretty much clockwork)-- I hope she is up to it.

Geordi's last day of 1st grade is tomorrow-- he has done really well this year and i'm amazed by his reading skills after 1st grade. Like his dad, his writing is pretty ugly so we will likely be working on that over the summer.

Trish and I have been going back and forth over what to do about school for next year-- with the headaches associated when Jaden or Geordi gets sick with (I'm amazed Brody hasn't gotten a bug)-- we are pretty sure we are going to home school Geordi and Jaden next year for at least the first half of the year (Jaden is supposed to start Kindergarten). We have looked into an online home school that looks promising. At least if the boys to get sick, they can take their home school to Grandma and Grandpa's house... ;)

I'm sure Geordi could adjust in and out of school but Jaden might have adjusting issues having missed out of the first half of kindergarten... he can be shy at times...

more later... Brody woke up and wants to watch a movie on the PC...

Bill

Appointment with Radiation Oncologist

I met with Brody's Radiation Oncologist on Friday.  The appointment basically involved reviewing Brody's past medical history and a breif discussion as to what to expect with Brody's upcoming radiation therapy treatments.  The doctor explained that once Brody starts radiation therapy, he will be coming in for treatments each day Monday through Friday.   Each treatment will take about 40mins and he will have to lay perfectly still during that 40 mins so they will have things ready to give him anesthesia each time if needed.  Side effects from the radiation include nausea, vomiting, diarrhea, skin reactions, possible damage to organs nearby the tumor bed being treated, damage to the bone (especially to the spinal column near area being treated) which may cause Brody to not grow as tall as he would have otherwise.  Radiation therapy also increases the risk of Brody developing another type of cancer later in life.   The doctor also told me today that 2 lymph nodes in Brody's pelvis area looked enlarged on past scans.  This was the first time anyone had mentioned this to me.  Quite alarming news for me.  Brody will be having another CT scan in a few weeks to see if his tumor is small enough yet to have surgery to remove it.  After it is removed is when the radiation therapy will start and continue for 6 weeks.  He will also be getting chemo during that time.  After the radiation therapy he will get another 15 weeks of chemo.  I will be asking his oncologist today (we're at the hospital for chemo right now) about the enlarged lymph nodes.  Wondering if they will remove them during the surgery also/whether they suspect the cancer has spread to those lymph nodes/how bad is this news/why didn't anybody mention it before?  The radiation oncologist brought it up to mention that if they end up needing to radiate in the area of these lymph nodes that they are very close to Brody's testicles so he wanted to be sure we understood that this may cause infertility issues for Brody. 

Anyhow I'm really scared of how radiation therapy is going to go for Brody.  But it absolutely has to be done.  The benefits certainly outweigh the risks.

After our appointment with the radiation oncologist on Friday we headed home to get started with a fun Memorial Day weekend.  My cousin Shawnda has been watching our beagle dog Tori for us (to help us cut down on infection risk sources).  She lives in Columbus but came up for a visit with Tori and her 3 small children (twin girls age 2 1/2 and one boy age 4).  They stayed with us on Friday and Saturday.  We have all really missed Tori and were glad she could bring her up for a visit.  It was nice to see my cousin again and the kids all had a good time playing together.  We all played on the waterpark and swimming pool for a little bit on Friday evening.  Then we went to the African Wildlife Safari Park on Saturday.  Unfortunately Geordi got sick with nausea and vomiting on Friday evening and he had to go spend Friday evening, Saturday and part of Sunday at Papaw and Grandma's house.  Then Jaden started getting sick on Sunday.  But they were both better by Monday (Memorial day) and we all had a fun day together as a family.  Bill had to work all weekend but was off on Monday to enjoy the day with the rest of us.  Bill was a little ill on Sunday too but so far (knock on wood) Brody and I have managed to avoid this one. 

 

Brody is in the hospital today to start his 4th round of chemo.   Today he will get Vincristine, Acinomycin-D, cyclophosphamide and Mesna.  He gets admitted overnight when he does the cyclophosphamide because he has to be on fluids for at least 24 hours following administration of the cyclophosphamide.  He usually gets a lot of nausea with this combo.  Generally by a few days after he starts to feel better.  Let's all hope it's not too bad this time. 

Brody riding camel at African Wildlife Safari Park

BRODY RIDING PONY AT AFRICAN WILDLIFE SAFARI PARK

Brody feeding zebra at the African Wildlife Safari Park

Brody enjoying his "waterpark."

http://www.youtube.com/watch?v=qHYtZShekKc&feature=youtube_gdata

Brody has been tired this week but feeling pretty good.

The second week into Brody's 3 week long chemo rounds tend to be the time when Brody is the most tired and this has held true for this week again.  The first week of each round Brody is pretty sick to his tummy most of the time.  So week 2 is much better.  Tired feels much better than nausea.  Plus even on the days he gets tired easy he still certainly gets his bursts of energy for awhile on most days and always makes some time for fun no matter what.  Brody is just getting ready to head into week 3 of this round.  Week 3 is when he usually feels his best. He starts to get his energy back and he doesn't have the nausea.  Today was our first hot day of the year.  Upper 80's with "feels like" temperature of 93.  It is suppose to be hot all week.  Brody recently bought a "waterpark" with money and giftcards many friends and family have given him since his diagnosis.  Brody was diagnosed with cancer on March 9th.  We had a birthday party planned for him and his brother Jaden on March 12th which obviously was canceled.  Part of Brody and Jaden's birthday present this year was going to be a springbreak trip to Kalahari (an indoor waterpark hotel) with Mom, Dad and big brother Geordi while he was on Springbreak.  This of course didn't take place either.  And Brody is not allowed per doctor's orders to go to public pools or waterparks due to risk of infection.  He is allowed to use a pool and watertoys in his own backyard though with proper safety and cleanliness in place of course.  So Mom and Dad decided to get Brody a pop-up above ground pool for the summer and pitch in on the waterpark Brody desparately wanted.  We figured we'll have a "staycation" in our own backyard this year and partially make-up for some of the fun stuff Brody missed out on this year.  Ordinarily I think I would consider these purchases to be way too much spoiling of our children and would be more frugal with our money. But this is certainly not ordinary times and right now I think Brody definitely deserves some "spoiling".   So if Brody can't go to a public pool and Brody can't go to a waterpark and  since the genorosity of so many friends and family have helped make it possible for us to swing it financially to purchase a pool and inflatable "waterpark" for Brody, then I certainly think he should be so "spoiled."  And today on our first hot day of the year, we set-up the waterpark.  The boys had a blast and so did some of the nearby neighborhood kids.  Brody played on the waterpark for quite a long time today before he finally got too tired and went inside to watch Max and Ruby.  Our new pool is all set-up too and filled with water but it will probably be Wed before the water chemistry is all good and we'll be able to get in.  It's killing the boys to have to be so patient and wait til that pool is all ready.  They'll be so excited when our pool is declared officially open. 

Brody goes in tomorrow morning for his one drug chemo (vincristine) and to get his labs checked.  It should be a short day at the hospital tomorrow.  Hopefully he doesn't need another transfusion.  He doesn't seem as tired as last weekend but he does still get tired faster than usual right now. 

Brody is scheduled to meet with the radiation oncologist on Friday afternoon.  We will start discussing and developing the plan of treatment for his upcoming radiation therapy.  He will begin radiation therapy after his tumor is surgically removed.  He will likely have this surgery in about 4 weeks.  He will continue chemo as he undergoes radiation therapy for 6 weeks and then once the 6 weeks of radiation therapy are complete he will continue with another 15 weeks of chemo.  We will likely know a lot more about what the radiation therapy will entail on Friday.  We'll be sure to let everyone know more details then. 

Thanks again to everyone for all the support and keeping us in your prayers.  We are so blessed to have such wonderful friends and family.  You have all done so much to help make this all something we can withstand.  I have learned to truely appreciate all the wonderful people in our lives and to reprioritize my life around what is really truely so much more important than where some of my time and energy had been in the past.  I hate that Brody has to endure so much.  It is so unfair.  But I guess life is just not fair and we have to make the most of what we have and be thankful for what we do have.  I know I feel closer to my friends and family now more than I ever have in my life.  I've been inspired by the goodness and love from friends, family, and even those who barely knew us before this "tragedy."  I've even started to pray again which is something I had not done in many years.  I have a renewed love and appreciation of just living and being with those I love.  A new joy of just living in the moment and enjoying my life rather than always striving for so many, many crazy goals I set for myself.  I've learned to "stop and smell the roses."  I wish that I could have woke up to what really is important in life before all this happened to Brody and that this was not all happening to him.   I hate that I don't have control over what is happening to him.  But I guess I have to learn to somehow have faith and trust that things will workout the way they are meant to be.  That's a toughie for me.  I'm a control freak.  I suppose I don' t really have a choice though.  We can seek out the best medical care available and provide the best supportive care we possibly can and pray that God heals Brody and helps him not suffer but in the end we don't get to decide how things will be. 

Brody up close with the ducks at the zoo

Brody really enjoyed the ducks at the zoo.  We had just finished seeing the elephants which were near the top of Brody's priority list to see and Brody started saying he was tired and wanted to come home.  So we started heading for the van and came upon 2 rather friendly ducks.  They kept following our wagon and other children's strollers too.  Those ducks knew the kids in those wagons and strollers just might break the rules and drop them a treat.  We didn't feed the zoo ducks but Brody sure did enjoy them being so close and decided he wanted to stay at the zoo a little longer to hang out with the ducks.

Brody riding the zoo carousel while waiting on the zoo train to return

http://www.youtube.com/watch?v=zgsi_fpD5vE&feature=youtube_gdata

Brody and Jaden on the zoo train

Brody was so excited to get on board the train at the Toledo zoo.  He started running toward the train as soon as he saw it.  He loves trains and he loves giraffes which you get to see from the train.

Brody feeling energized after another blood transfusion

Brody went in for his second week of his third round of chemo on Monday.  He has labs done every week on Monday before they start his chemo each week too.  His hemoglobin was really low this week so Brody got another blood transfusion on Monday too.  Papaw and Grandma came up for a visit on Sunday.  The boys were all so happy to see them.  We all went to the park and out to eat after at Applebee's.  Brody was very tired on Sunday so I was not at all surprised he needed blood again on Monday.  He's got his energy back now though and has been eating pretty good this week too.  I plan to take Brody to the Toledo zoo today.  He really wants to ride the zoo train and see the giraffes.  I'm looking forward to a fun day with Brody after he wakes up. 

Tuesday

Brody is back in the hospital for his normal every third week 3 drug chemo. He is feeling pretty nauseous from it so once again a struggle to take his oral meds. For the chemical round they push fluids via IV and since he doesn't have his bag anymore, he is peeing it all out the normal way... he woke dad up every 2 hours last night having to go potty... no accidents.

They weighed him again yesterday and he had gained back about 1.5 pounds the past week... weighs 16.3 kilograms or about 35.9 pounds.... he probably won't eat much the next few days due to nausea.

He will likely be going home about 3 today... they push the IV fluid for 24 hours and he started the chemo a little late yesterday.

Jaden and Brody have been watching movies and playing Wii while here.

That's about it... excuse any typos.... I'm tryping from my phone again

Sent from my Droid Phone

Brody's Nephrostomy Tube is Out, Yeah!

Brody had an ultrasound today which showed no fluid around his kidney and you could see the urine from the left kidney flowing into the bladder.  He was then sent to interventional radiology where a IV contrast dye was injected into his nephrostomy tube as the radiologist watched to observe the flow through his kidney's to urterer and bladder.  The doctor's comment was, "it's wide open" and he instructed the nurse to go ahead and pull the tube.  Brody was very brave through the whole experience.  He needed no sedation or medication and his tube is now out.  Brody is happy to be home and free of carrying around his tube and bag of urine.  He has been wanting to jump in his "jumper" for quite some time now but he had not been able to because we were so afraid he would accidentally pull his tube loose if he did.  So he has been enjoying jumping in his jumper since he got home and playing with his buddy, Lucy. 

Tuesday Morning

Brody got his 1 drug chemo yesterday and did ok. He also had a CT scan done. The CT showed significantly more shrinkage of the tumor. They called us late yesterday and told us to go ahead and clamp off his Nephrostomy tube so his left kidney should be draining to his bladder now. On Thursday he is supposed to go in for an ultrasound of his kidney. As long as there is no "hydro nephrostomy" (excess liquid in the kidney), he will have the Nephrostomy tube removed. If there is, then they will have to replace it with a new tube-- this is done with him under anestesia and he may have to spend the night thursday.

He is scheduled to have his next chemo round monday (this is the 3 week one where he is admitted over night.

He did gain a little bit of weight over the last week-- almost 34.5 pounds.

He continues to feel better. Geordi came back from Trish's parents house on Saturday (we sent him down there with his bad cold last week)... Jaden is still down there.

That is really about it for now...

Brody said he wanted to come inside and watch Cars and "rest"

http://www.youtube.com/watch?v=hiRYmkTMSQQ&feature=youtube_gdata

CT Scan coming up

Sorry it's been a little while since our last post.  Brody is having a good day today and has been eating better this week.  Brody went in for labs and chemo this past Monday.  Turned out his hemoblobin was really low and Brody needed another blood transfusion.  He spent Tuesday getting the transfusion.  It has helped Brody's energy level tremendously.  I think this was his 4th transfusion so far.  Today we played on our swing set and then Brody and I went to Maumee Bay State Park.  There is bike trail there next to the Lake Erie shore.  Brody rode his new bike there while I jogged along behind him.  It has been a beautiful, warm sunny day.  We both got our exercise in today and when we got back home we both took a much needed short nap. 

Geordi and Jaden are both sick with a cold this week and have been at Grandma and Papaws all week.  Sounds like they are both getting better and will hopefully be able to come home soon.  Brody (and Mommy and Daddy) really miss them.   Brody, Geordi, and Jaden fortunately all understand that it is very important that nobody sick be around Brody right now.   But of course it's still tough on all of us that simple colds have separated us all right now.

Brody will be getting another CT scan on Monday.  Brody has had his current nephrostomy tube in for more than 30 days and typically they need replaced within 30 days.  The scan on Monday will help the doctors decide if they need to replace his tube or if they can just pull it if the tumor has shrunk enough that he doesn't need it anymore.  If it turns out that it needs replaced again then Brody will have to go under ansthesia again for the surgical procedure. 

Well Brody says he's hungry.  Better feed him.