Wednesday Evening

Brody got out of the hospital yesterday about 1 pm or so and came home. He has been doing pretty good however for his chemo he will be getting some each week and will supposed to be on Bactrim (an antibiotic) for 3 days after each round. He has been having problems keeping this down-- I don't think it is general nausea but the taste of this as he usually reverses just trying to swallow... we tried liquid and pills and the quantity he is supposed to get is alot for a little guy-- so of course he doesn't want to take any medicine... even the anti nausea medicine... every dose of medicine has been a fight-- especially when he has lost a fair amount of weight already and doesn't have much of an appetite-- been very stressful for Mom & Dad and of course Brody.

We are trying to time out everything so if he does throw up he doesn't throw up a recent meal-- very difficult-- we came up with a schedule that we think will work but have to stick to it or it throws everything off.

We have been trying to explain to him he has to take the medicine or he will have to go back to the hospital.

We also need to give him an injection once per day for 10 days after the round he gets on every 3rd week... last nights didn't seem to bother him-- the numbing cream works well and the needles on the syringes they gave us are shorter and finer then the ones he got in the hospital.

He drove his jeep around today-- very nice weather (low 70s and sunny)-- played some wii, watched vids, etc... His Brothers got home last night about 8 pm or so-- they have been a big help (mostly).

His leg is feeling better but he still can't walk on it-- hoping this will clear up soon. He also has his Nephrostomy tube in draining his left kidney-- this will be in another week or two at least.

Not alot more to report-- I'm hoping we don't have much excitement and have very little to post on the blog-- in this case boring is good.

Thanks to everyone following this and for the words, gifts, and help we have received...

Brody, Bill, Trish, Geordi, and Jaden...

Mondays evening

At the hospital for the night.  Brody is tolerating the hospital a bit better his time.  He of course didn't like getting poked for his chest port access alhough I'm sure he didn't feel it.. we numb his skin with cream before hand.  I'm sure he will hate getting the taped pulled off tomorrow far worse.  He has been hanging out all day, snacking playing Wii, watching movies (incredibles earlier, cars now).. the hospital staff isn't bothering him too much so he isn't miserable.  They are giving him a lot of IV fluid so I'm sure he will be keeping me up tonight waking up to pee.... I think I can handle one night... as can he as we have told him repeatedly that it will be just one night. It is supposed to be up in the 70's later in the week and we intend to enjoy it.

Not much more to report.  Brody's hair was starting to fall out and it was bugging him so we got out he clippers last night... was harder to do then I thought.... he doesn't seem to mind it.. till cute as a button... hope he doesn't lose his eye lashes...

I'm typing this from my phone again so please excuse any typos.....

Sent from my Droid Phone

Brody's new haircut

Brody going for a ride

Here's a cool YouTube video

http://www.youtube.com/watch?v=VCJudS57Cuk&feature=youtube_gdata

Brody came home today-- and took a drive

Diagnosis of Rhabdomyosarcoma is confirmed

Brody's doctor has received confirmation that Brody does indeed have rhabdomyosarcoma.  Brody will begin his new chemo regimen on Monday.  The plan is still for Brody to go home tomorrow afternoon and return on Monday for chemo.  If Brody does well with the chemo round he should only have to be admitted for 24hrs before returning home to recover.  He will take 3 different chemo meds on Monday (vincristine, actinomycin-D and cyclophosphamide).  These 3 drugs will be repeated in 3 weeks and Brody will take Vincristine every week.  It is expected that he will be doing this for the next year.  He will be evaluated at 12 weeks as to whether the tumor is small enough to remove surgically.  Chemo will still continue after the surgery (studies show high risk of recurrence even if they think they got it all if they don't do this).  Brody will also undergo radiation therapy following surgery to remove tumor.  This will occur during weeks 12 through 24.  During radiation therapy the actinomycin-D will not be given and MESNA will be given in combo with radiation therapy. After radiation therapy, rounds of vicristine, actinomycin- D, and/or topetecan and cyclophosphamide (with MESNA) will be given for an additional 15 weeks, making the total length of treatment about 40 weeks.

Brody has been diagnosed with intermediate-risk rhabdomyosarcoma.  The 5 year survival rate for this risk level following the regimen proposed is 70%.

Brody will of course  continue to be evaluated along the way and his treatment plan will be modified to best suit his needs.  He is by no means locked into the above described regimen which is the current standard of care for his cancer.  I still have many questions especially concerning different options for radiation therapy (IORT vs. external beam for example).  I also have several questions regarding stem cell rescue.  Harvest his own cells and at what point and whether his cord blood which I saved and have stored in Florida could be used for stem cell rescue.  Also, don' t know if they expect he will need stem cell rescue. 

Actually, I have many, many more questions.  I'll be rather busy this weekend searching answers.

Well, it's 9:00pm.  Time to get Geordi and Jaden home and ready for bed.  And, finish preparing the house for Brody's return home tomorrow.

All the boys playing Wii

Jaden and Geordi are finally over their colds and can visit Brody.  They were all so excited to be back together again.  And, Brody has had lots of practice playing Wii lately and his newly developed skills are impressing his brothers.

B-day 2 years ago

Friday morning

Brody continues to feel better (when none of the hospital staff is in the room)-- when any of them enter he gets very anxious- the only painful thing they do to him is is nightly injection and they put cream on to numb his skin about an hour before hand-- he still doesn't like it-- we have been alternating sites right side left side (arm leg arm leg)-- he seems to be fine right after they leave the room. Brody still hasn't had too much of an appetite but he eats here and there-- he had some popcorn last night before bed (and not the low fat kind at home :) ) 

Grandma brought Jaden home yesterday, Jaden seems to be over his cold and was able to visit with Brody for a few hours, they played some Wii  (obviously)-- Jaden has missed playing this a lot so had a lot of time to make up for.


We had a pretty uneventful night-- a few wake ups to go potty and for his vitals and breathing treatment about 3am again- he is still sleeping now (9am).

Still waiting on hearing whether he can go home for the weekend...

Brody having a good time at the beach last summer

 

New Diagnosis

Brody's oncologist has heard back information from Dr. H. Shimada.  He is still waiting to talk to him (Dr. Shimada) this afternoon for further information and direction.  Our oncologist expects to talk to Bill and I again today after another conversation with Dr. Shimada. 

 

But based on the information they have so far, it is now believed that Brody does not have Neuroblastoma after all.  Instead, they think it is Rhabdomyosarcoma.  It is another type of solid malignant tumor which fortuantely has a better prognosis than Neuroblastoma.  Expected survival rates of up to 70% for his stage vs. somewhere between 25-50% for Neuroblastoma tumor of the size tumor Brody has.  Here is a copy of a link that can give you much more info on rhabdomyosarcoma.

 

http://www.acor.org/ped-onc/diseases/rhabdo.html

 

Brody's blood cell counts are looking much better today.  He's recovered well from his first round of chemo.  The chemo round that Brody has already been through is not as effective at treating rhabdomyosarcoma as regimens normally used for that type of tumor.  The first round has not shrunk his tumor very much but has gotten a little smaller.  His next round of chemo will start on Monday using agents known to be much more effective at shrinking rhabdomyosarcoma.  His oncologist says that these types of tumors generally respond very quickly to the chemo regimen they plan to use on Monday. 

 

Today Brody is feeling pretty good.  He looks more alert than he has and has been eating oatmeal with whole milk, cookie crisp cereal in whole milk, and orange flavored Boost Breeze juice box drink (has lots of calories per volume and 9 grams protein and vitamin fortified).  Brody has been busy playing MarioKart on Wii today.  He's getting really good at it.  He'll probably enjoy beating his big brothers at the game soon.  He's definitely smoking Mommy. 

 

Brody's oncologist wants to try to get Brody home for the weekend before he will need to return for chemo on Monday.  Today they are clamping his nephrostomy tube again and gradually increasing increments of time to test if they will be able to remove it before Brody returns home.  Each time they unclamp it they measure the flow of urine into the tube/bag.  If it is greater than 15ml then they will need to leave it unclampled and leave the neprostomy tube in place.  So far, they had it clamped for an hour and then unclampled it; 10ml of urine flowed into the bag.  Right now it is being clamped for 2 hours before they will unclamp again.  Even if they are not able to remove the neprostomy tube, they still plan to let Brody go home for the weekend and go over a plan with Bill and I on how to take care of the tube and what to do if it is dislodged etc.  I really hope the tumor has shrunk enough to be able to take it out.  It really limits what Brody is able to do and he really hates the thing.  And, it is definite infection risk. 

 

We'll be sure to post more info after our next talk with the oncologist. 

Brody enjoying his M&Ms while taking a Radio Flyer Wagon ride

Wednesday Evening

Last night Brody decided to keep Dad up. He had a long late nap yesterday and about 3 AM he insisted on watching a movie. That, his breathing treatment, going potty, sitting up in bed, asking for a drink, etc.. kept me up almost constantly til 6 am (or at least it felt like it)

Brody had another "better" day. He is past the trough from his first round of chemo-- his white blood cell count and other stuff is improving. His appetite, while not robust is at least existent.. however he is still avoiding some food that he used to love-- mainly cheese and bananas.

Today he had another ultrasound of his kidney (a follow up of his one on Monday to make sure his kidney was looking better). He also had to get his chest port "access" replaced today... so they removed it and then applied the numbing cream back to the area that he gets to keep on for an hour or so before the put in a new needle into the port for his IV and TPN.... the best part of this is he wasn't tied to an IV drip for an hour or so.... Brody and Mom took advantage of this and Trish pulled him around the hospital in a wagon for a while... Brody found a vending machine and got some M&Ms-- I'm sure he enjoyed his limited freedom.

He played some board games (Brody smoked Mom and Dad at Candyland) and Wii today...

Brody really misses playing with his brothers... they are both still getting over colds... hopefully they can play together soon...

Brody has a head start on me going to bed...

More tomorrow...

Bill

Tuesday night

Brody had a much better day. He spent most of the day with Trish and he ate food and played games (video and board games) and then they watched some home vids and looked at pictures off of Trish's laptop. I'm not sure all of what they did as I was not here and Brody was napping when I got back this evening so Trish and I didn't get a chance to talk very much about it- of course it ended with Mom and Dad giving Brody a shot (probably harder on us then him) under the supervision of the nurse- this will be an injection we will have to give Brody at home when he gets out of the hospital so they need to make sure we can give it him properly.

His main discomfort is gas due to his gastro intestinal issues from all the antibiotics and stuff he has endured.

Today is Jaden's (Brody's brother) B-day.... he turned five.... Jaden is at grandma and grandpa's house and seems to be having a good time without us. He went swimming at the "Y" today and has been doing alot of fun stuff.

Brody went to sleep already and I should too-- 

Bill

Brody is starting to get his appetite back somewhat. Last night I pulled a tangerine out of the fridge and started eating it... he looked like he was interested so I asked him if he wanted some... he said not but said mommy bought some donuts... So i got him out some white powdered donuts and gave him small bites over an hour while we watched some TV and he tolerated them well.

This morning he wasn't interested in the food they brought him for breakfast but we brought in a box of cookie crisp cereal (one of his favorites)-- we spread the bites out every 3 to 5 minutes and he has been tolerating them well. We are taking a break now (he had to get some medicine for his mouth that we swab on his cheeks and gum and that he spits back out-- he is not supposed to eat or drink for at least 30 minutes after this... it has been a hard 30 minutes for him. He has asked every few minutes for some more cereal.... 2 more minutes and he gets some... just said "I'm hungry".. can't keep him waiting....

More later....

Brody taking a much-needed nap

Brody's Rash

Brody's new rash today is already looking less red.  Not sure what it is from.  Vancomycin can  cause red man syndrome especially if infused too quickly but they've been giving it over 2 hours. 
Maybe it's allergic rxn to cefepime but it doesnt itch.  Maybe it's a virus that gives a rash.  It's hard to know what to do when u don't know what is causing it. 
Guess for now, he has to continue with his current meds and keep monitoring the rash. : (

Picture of Itsy Bitsy Spider Game Brody likes

Brody playin Wii Lego Star Wars with Dad

Brody concentrating on Wii Lego Star Wars game

Monday Morning

Brody had is ultrasound this morning.  Unfortunately there is fluid around the left kidney and there was urine leaking around where the nephrostomy tube comes out of Brody' s back. So the nephrostomy tube must stay in for now and remain unclamped.  ARGH! 

Brody also has developed a rash of some sort.  Looks like another allergic reaction.  He' s not itchy yet though. 

Brody is happily playing Wii Lego Star Wars with Dad right now.  And he also does not currently have a fever. 

Right now I'm really frustrated but also thankful that for the moment Brody is happy.  I need to learn to just live in the moment, like Brody.

Sunday

Brody was still not able to keep any food down at all today.  He was started on TPN (nutrition through iv) this evening.  He also has had diarrhea for several days now.  His poor bottom is raw and very sore.  This evening he did not want to sit in bed.  He had to lay because his bottom was too sore.  We've been coating his bottom with a heavy protective barrier cream after each bowel movement.  We started using different wipes this evening that seem to be less irritating than previous wipes we've used.  Even wet wash cloth seems to hurt him. 
I'm going to stop and buy him a bunch of softer wash clothes than what the hospital has and use those and water.  Plus apply the protective cream plus antibiotic ointment to any open spots on the skin. 

Brody did not have a fever for most the day but started to run one this evening.

He was started on Diflucan (anti-fungal) today.  He is also still taking his other antibiotics (cefepime, vancomycin, gentamicin), zantac (acid reducer), zofran (for nausea), benadryl (for nausea), nystatin swish and spit for thrush, and neupogen sub-q injections (to increase his white blood cells), Tylenol as needed for fever or pain.  Brody also has orders for codeine as needed for pain which fortunately he has not needed. 

Brody has continued to do well with his nephrostomy tube clamped.  We've had a few folks following the blog that weren't sure what that meant.  So let me try to explain.  When Brody was first admitted to the hospital he had a lot of pain.  When they did the CT scan on his first admission they could see that the tumor was putting a lot of pressure on his left kidney and scans showed lots of fluid around his kidney which also looked misshaped and labs showed was also not functioning very well either.  His blood pressure was also very high as a result.  The nephrologist and urologist felt they needed to do something right away to help drain the kidney and hopefully save it.  The solution was to put in a nephrostomy tube which is a tube inserted into kidney and comes out of Brody's back and has a bag externally that collects urine from the left kidney.  So instead of urine running from his kidney through ureter to bladder, it runs from kidney to nephrostomy tube to bag.  The nephrostomy tube turned out to be succesful at saving Brody's kidney and relieving a great deal of pain Brody was experiencing.  But Brody is then stuck with a tube coming out of his back attached to a bag of urine.  This tube is also a huge risk area for infection with him being on chemo.  So his oncologist and Brody and mom and  dad want it out as soon as it is safe to do so. 

The CT scan Brody had on Friday showed that the tumor has gotten a tiny bit smaller and it looked like just enough smaller that his ureter was no longer occluded.  So to test to be sure that the kidney  could now drain without the nephrostomy tube, the oncologist had the nurse clamp it shut.  First they did it for 2 hours and then unclamped it and looked to see if any urine started to rush into nephrostomy tube when it was unclamped.  It did not.  Yeah, it had gone through ureter instead already.  They also measured urine ouput (how much Brody was peeing) and creatinine (lab measure of kidney function).  They kept gradually increasing the amount of time the tube was clamped and closely monitoring Brody through the process.  Brody had the tube clamped all day today.  He will have an ultrasound tomorrow to take a look at kidney and see if no fluid around it.  If all looks good, his nephrostomy tube will be pulled out tomorrow.  Yeah!

Despite Brody's sore bottom and inability to eat today, he was able to be happy most of the day.  We played Wii Lego Star wars, Wii golf, Wii baseball, Wii bowling, Wii boxing, Wii tennis.  We also played with some of his new birthday presents.  He liked his itsy bitsy spider game Grandma got him a lot. It's a really cute game.  It has a water spot with a faucet at the top that you load blue marbles (water) in and there is clear plastic tray that is on the spout with pegs that hold plastic spiders. There is space underneathe this clear plastic tray.  When you turn on the faucet, it releases the marbles into this space underneathe the spiders.  So the marbles (water) can wash your spider out.  Each person playing the game gets 2 spiders that they have to try to get to the top of the water spout before anyone else.  The game has a spinner where you spin for how many spaces you can move one of your spiders, or you may get rain drop which means to turn water spout to release water (marble) which may wash out your spider(s) and/or someone elses spider(s).  The spinner also has spot that you have to switch your spiders position with anyone elses spider.  I'll take a picture of it tomorrow.  Brody loved the game and he loves the song.  He's so cute singing it too.  That song always makes me think of him. 

Well, it's getting late and I'm getting tired.  We'll write more tomorrow.  Goodnight.  Keep us in your prayers.

Sunday Evening

Going to keep this short....Brody just went to sleep and I need some sleep too.

He still isn't eating, they started a TPN IV through his chest port-- TPN is Total parenteral nutrition--  since he has hardly had a bite to eat in a while that he has kept down. Hoping he will start keeping some food down soon. His fever has been spiking back up but is being controlled by tylenol.

I got out of the hospital for a few hours today. Jaden's 5th B-day is Tuesday so Grandma and Grandpa  and Trish's Grandma brought him back up here for the the day. I took him and Geordi to a movie (Diary of a Wimpy Kid) while Trish was with Brody, then brought Jaden to the Hospital and stayed with Brody while Mom took the boys out for a Birthday dinner... Jaden went back down to Trish's parents house after dinner. Hoping everyone gets over their coughs/colds real quick.

Brody has been tolerating having his Nephrostomy tube clamped. Hopefully we can get it removed tomorrow... it is uncomfortable (although it is small it is in his left lower back) and is a potential infection point.

I did play some Wii starwars and Wii sports (golf) this morning with Brody to keep him entertained and engaged... he did surprisingly well at the golf.

Brody is getting stubborn with the hospital staff... he doesn't want them to do anything for him-- fortunately I've learned a lot of their secrets for changing bedding (pads) without taking him out of bed and taking care of stuff when nature calls.... I have been trying to get him out of bed, at least sitting in a chair-- his leg is still bugging him a lot.

Thanks again for every ones support.... I need to get some rest now...

Bill (a tired dad)

Saturday Evening

Brody is sleeping now. He couldn't keep anything down today... probably harder on Mom and Dad then on him. His fever keeps spiking, but tylenol has been knocking it back down. We played some Wii today-- Brody played some Diego by himself and then Brody and I (Bill) played some Lego Star Wars... it is a bit difficult for him to do by himself but not too bad if the other player knows what to do... Geordi could have done it a bit better. This afternoon we watched a few movies-- Cars and Finding Nemo and a couple of Dora and Diego vids too.

The clamping of his Nephrostomy tubes has gone well-- he had it clamped for 4 hours two times with about an hour in between them... they plan on leaving it clamped tonight to see how it does... if all goes well they may remove it on monday.

His pain seems better. He is off pain meds (other then tylenol for his fever) and besides his leg issue, he only seems to complain about pain when he has gas.

Geordi and Jaden have been fighting some colds so we have been staying away from each other. Geordi has been in school and a friend of ours has been watching him when Trish and I are here. Jaden is at Grandma and Grampa's still... helping out a lot and keeping pretty busy. Reports are they are being good.

I can't think of anything more now....

Thanks again for all support and kind words we have received...

Bill, Trish, Geordi, Jaden, & Brody.

Saturday morning

Bill is still at the hospital with Brody-- I've lost count of how many days it has been (11 days according to the calender, seems longer). Noting the time on Trish's post I hope she sleeps in today before she comes out to the hospital (unless the time stamp is messed up on her account), she left the hospital at about 11 pm. While Mom is the night owl in the family, I do have the ability to fall back asleep fast (a trait I developed in the Navy) so with frequent wake ups, it is ideal that I spend the nights with Brody to comfort and help care for him when he wakes up at night to go potty, for his breathing treatments, or when he wakes for his vital signs. So, while I have been getting some rest it hasn't been completely restful- I feel kind of helpless and have a lot of nervous energy- I just want to do something-- he doesn't want to eat which is very frustrating.. a battle for every bite. I took a walk yesterday for about an hour-- it was very nice (spring) day yesterday-- pushing 70 degrees and sunny, shorts weather for me-- supposed to get cool again through the weekend.

He still has a fever 102.5 when they checked a short time ago, his white blood cell count is 0 now so his immune system is gone right now. So we  really don't want any visitors right now. They have been weening him off his pain meds. His main discomfort seems to be his leg (Trish described this previously), and his abdominal pain seems to be stemming from gas-- it seems to diminish when he passes some gas. They tried to give him some codeine this morning for pain control but he promptly vomited it up. They will be broadening his antibiotic coverage since his immune system is so compromised and he just had the new nephrostomy tube installed.

They did clamp off his nephostomy tube this morning for 2 hours and he seemed fine. They opened it back up just now and after a short time they will be clamping it for 4 hours and see how he does.

He did sleep pretty well last night, but seems to be getting afraid of some of the hospital staff now... his heart rate takes off every time they walk in.

Thats about it for now... more later

Bill

Brody's mural pic

Friday Evening

Brody went for another CT scan this afternoon.  His doctor was concerned about Brody not being able to straighten his left leg or stand on his left leg.  She suspected that maybe a hematoma may have formed in muscle(s) involved in these movements and she wanted to see if they could get a better look at Brody's ureter to determine if it was actually still occluded or just stretched.  The results of CT scan ended up showing that the tumor has shrunk a tiny bit and the ureter appears to no longer be occluded but stretched and the tumor in the area the biopsies were taken from is pressing against muscle needed to move Brody's left leg. 

So the plan now is to clamp Brody's nephrostomy tube and monitor him to see if his ureter will now be able to function.  If all goes well, the nephrostomy tube would be pulled on Monday.

The doctor also mentioned today that Dr H. Shimada, the neuroblastoma world expert reviewing Brody's case is out of the country til Monday.  So it will be longer still til we get a definitive diagnosis and idea of prognosis.  However, our doctor today did mention that Brody's N-myc came back negative.  I found this to be very exciting news since prognosis is far better if N-myc is not amplified.  So right now we know he has huge stage 3 tumor that is not in his bone marrow and not showing N-myc amplification. 

Brody went most of the day without developing any fevers until late in the evening when he had a fever of 100.8.  Cultures were taken from blood and urine and Brody was given Tylenol and placed back on his Bactrim antibiotic which had been discontinued in the morning.

Brody is still having many, many loose stools.  He does not have an appetite and it is very difficult to get him to eat.  He can also only handle very small volume of food at once.  He vomited twice today.  He managed to keep down about 4oz of chocolate milk and about a quarter of a bacon, egg, cheese hot pocket today. 

Brody is taking Neupogen (increases his white blood cells needed to fight infectik ) sub-q injections once a day.  When Brody is healthy enough to come home we will have to give him those injections everyday instead of his nurse.  I'm dreading it.  He really hates the shots and I don't blame him.  I've given a lot of injections but having to give one to my child is awful. 

On a positive note, I did see Brody smile several times today.  He is still managing to find ways to just have fun no matter what. 

I was also very excited when I got home today and saw the awesome job some of best friends did creating a mural in Brody's room to surprise him when he comes home.  It has African Safari animals which Brody loves. 

Alright I'm getting really tired.... more to come tomorrow.

Camping last year near Maumee river.

Friday (noonish)

Brody's itching is much better (in that it doesn't itch as much). He is still red in a lot of places but is not uncomfortable. The Docs are relatively sure it was his antibiotic as the itching stopping seemed to correspond a lot with the discontinuation of it. He is on a different antibiotic since he had minor surgery yesterday.. which they expect to discontinue soon. He hasn't had fever for a few days now.

More later...

Opening late b-day present.

Playing with some new presents...

Thursday Evening

Today was another big day for Brody.  We started the day excited that Brody would be loosing a few tubes today.  At 5am he had his foley removed and has had no problem going pee pee since it was removed.  After that Brody was taken for another NIBGH scan.  We don't know the results of this scan yet (nor whether his neuroblastoma is intermediate risk or high risk yet).

  At 1:15pm he was taken to have his internal stent placed to unblock his ureter so that urine flow would no longer be occluded from kidney to the bladder.  Unfortunately, his doctors were not able to complete this successfully.  They attempted but  it appears the tumor is still too large for them to place the stent.  So they replaced his nephrostomy tube with a new nephrostomy tube while he was still under the anesthesia (the nephrostomy tubes can only stay in for a max of one month at a time before being replaced).  As the tumor shrinks further they can try again to do the internal stent and eventually remove the nephrostomy tube.

Brody did much better recovering from ansthesia today.  He is breathing well this time and he has not had any fevers today  nor very much pain.   He does still say that his belly hurts any time he needs to pee and his left leg (calf area) hurts whenever he tries to stand up or fully extend or straighten it.  The doctors are not sure what exactly is causing the leg pain.  They think it is his tumor pressing on something in the abdominal area that is giving a referred pain to his leg.  They plan to begin having him work  with a PT to get him using his left leg again. 

Brody has developed an allergic reaction to one of his medications or adhesive tape or hospital laundry detergent.  We are not sure what exactly he is reacting to but are most suspicious of the ceftaxime (anitbiotic) and adhesive tape or both.  Anywhere he has had tape he is very red and itchy but he also has wide spread areas on his back, groin, neck and scalp that were not exposed to the tape. His antibiotic was changed to Bactrim this evening and we are trying to avoid adhesive tape exposure as much as possible.  Hopefully his itchiness and rash will soon improve.  He has orders for atarax by mouth as needed for itching.

Brody is currently eating mashed potatoes, a little bit of banana, and we're working on talking him into a few bites of cheese pizza.  He spent some time this morning playing Go Diego Go Safari Rescue on the Wii and is chilling watching some TV right now in between bites of food.  Brody has not had much of an appetite.  It takes a lot to get him to eat each bite of food.  We welcome any ideas to up his nutrient load/suggestions for disguising some high nutrient foods or products into foods he likes.  Brody loves chocolate milk so we thought we'd try giving him carnation choclate flavored instant breakfast to get some more calories and nutrients into him but he did not like it.  We're open to deas to increase his calories and nutrients into smaller volumes of foods.  Again, thanks to everyone for all of your support to our family during this ordeal. 

Wenesday Night

Brody had a better day today. He doesn't have much of an appetite so requires a bit of coaxing to eat. He did sit on the potty today (has been wearing a diaper).  He played some Go Diego Go Safari Rescue on our Wii and had a good time...didn't stress him as much as our other games.

Tomorrow he gets an internal stint between his left kidney and bladder a little after 1 pm. Hoping he shakes off the effect of the anesthesia easily... his tubes limit his mobility and anything to improve his comfort and make him feel more normal will be welcome.

Sorry going to cut this one short... Dad is getting tired and no words are coming.


For those of those that want to help, please consider donating blood-- I believe you can donate it in his name. He has received 2 transfusions so far and we expect more in the future, while your blood will not likely make it too him... it will help replenish the pool he is drawing from.

Thanks once again to all the help and gifts we have received from our friends & family... it really does help us to feel we aren't alone in all of this...

Will update again tomorrow.

Going to get some pics taken  (about 45 minutes ago)

Brody's 4th b-day (2 weeks ago)

Tuesday Night

Brody is out of PICU now and back in his regular room (much quieter & nicer).

They started weening him off oxygen yesterday and took him off oxygen last night about 1 am and his numbers remained good. He did experience some delusions again last night (they refer to this as ICU Psychosis) and could not fall asleep... it was as if he was too tired to sleep-- would start to dream before he was asleep. He kept feeling like he was falling or whatnot and just getting real upset.


He does have a fever still that seems to be controlled with tylenol.

He finally settled down about 2 am and I was right behind him (I was already sleep deprived and at that point had been up for 22 hours)-- we got about 5 1/2 hours down. He got out of the PICU around noon.

He was still tired but wanted to play some Wii-- of course we let him... He seems to like the games that his Brothers do but he isn't as good as them and gets mad if things don't go his way. Trying to get him to play the easier games but he isn't interested. Dad went home for a few hour nap and got back about 8 pm, Mom and Geordi went home about 9:30. A friend is going to loan me a few younger kid wii games that hopefully his son won't miss (Thank Rich)

He did eat some today... not a lot but better then nothing (he hasn't eaten much since he has been here and it had been a few days since he took a bite)... the Hospital does have awesome macaroni and cheese which helps and overall the hospital does have good food.

It is now about 11 pm, he just went to sleep and I'm not far behind.

Immediate outlook...

With his Chemo his immune system will soon be very compromised so while we welcome visitors, please don't visit if you are sick-   Don't be surprised if he doesn't say much... he is a bit shy around people he doesn't know well.

On Thurday he is having the tube that is draining his Kidney removed and this will be replaced by a stint that will drain his left kidney to his bladder, this is so the tumor doesn't close off his ureter again by exerting pressure on it-- according to the Nephologist (kidney doctor), his kidney function seems ok so the pressure on his kidney/ureter hopefully didn't harm his kidney. Hoping he rebounds well from this surgery... one less tube attached anyway and hopefully he can go home after not too much longer.

He had the IV removed from his hand (just using the chest port now for IV fluid). and he isn't having his Blood pressure checked so often now so he doesn't have the cuff bugging him now.

All the above is making him more comfortable, hoping we can get into a regular routine so we can get some rest.

Please feel free to comment on my blog posts... or if you have questions. If you want you can email them too me as well (if you don't think they should be public). Blog improvement suggestions are welcomed.

I will try to get some more pics up tomorrow. I do have some recent pics (from before we knew he was sick) I will upload off my phone shortly.

Thanks to everyone following this blog and to everyone that has helped us and given us their thoughts and prayers

Bill, Trish, Geordi, Jaden, & Brody...

another angle... playing the Simpsons game.

Brody & Dad playing some Wii

From my phone again-- I'm able to email the blog postings

Brody is getting his 3rd and final dose of chemo for his first round as I write this.  He feels a lot better from a pain perspective and his breathing is getting alot better. He really needs to just sleep better.. they took him off his high flow oxygen and are weening him from the oxygen altogether. The high flow bothers him a lot so I'm hoping he sleeps well tonight... he and I both need it. He doesn't have much of an appetite so we are hoping that picks up too.

As far as his pain and comfort... he did feel well enough to play some Wii last night and is playing more now.... sitting up better in bed and moving better. Need to get him out of bed soon.

His immune system will soon be very depressed from the chemo. We have made arrangements for people to take our dog and cat already for when he comes home.. we don't want any extra germs around the house. Thank you to those that took them.

I need to go now.... more later with some Wii playing pics.

Sunday morning

Typing from my phone so sorry for the auto correct typos

He continued to have air flow issues and discomfort yesterday so they upped his morphine a bit to make him more comfortable. The thought is that the tumor is pushing up against his diaphragm making it hard to take full breaths and also that his pain was high enough that he doesn't want to move very much which furher depresses his respiration effectiveness and him just being tired.

Upon discussion with his oncologist we decided to start his Chemotherapy last night rather then wait til Monday. We are still waiting for some pathology results that will dictate his course of treatment. We decided the benefit of starting now exceeded any benefit he might have gotten by waiting til Monday.

Last night was a bit rough for us. Trish and I both stayed the night. Brody got a bit delirious last night and was pretty much having waking dreams.. he is very tired. This is a side effect of his morphine. He was talking up a storm, seeing birds fly through his room and wanting me to go get them for him so he could see them better... he was playing Wii games too.  He did keep trying to pull at his IV and stuff so we had to watch him like a hawk... he seemed particularly mad at his brother Jaden. Trish watched him til 4 am (she lost an hour with the time change) while I slept.. he kept her busy. He settled down and went to sleep very soon after Trish laid down so dad has time to type this now. We do think that his delirious spell did help him as he was moving around a lot, his lungs do sound better.

I think that is al I have to write for now.

Thank you to everyone offering the kind words and support.

My email for video links.... pizzifwa@yahoo.com

A lot of people have offered to do things, we have plenty of assistance at this time... one thing i just thought of anyone that has a few minutes online that you can do to help Brody directly is to find him some kid suitable videos on YouTube for him.  I have a program to download the vids to our PC and a flash video player to play them back on... if anyone wants to, you can email bill video links to download.  Please screen them to make sure they aren't dubbed over with adult Humor audio... he likes Nick rooms Dora, Diego, blues clues, Oswald.... we have some videos of these but he has been watching them a lot lately.. I've been trying to get him to watch other stuff too but he is a stubborn boy and is definitely getting his way right now. Links to kids vids other then he above are welcomed

Thanks

Please excuse the typos, my phone's auto correct has a mind of its own at times

Saturday morning


Brody is still very tender to move and is on some oxygen to keep is blood oxygen up.. this has been bugging him some (tickling and irritating his nose) and kept him up last night a fair amount. His dad did catch a few winks.
He is still amazing me with how brave he has been... he has a very proud dad.

Thanks to all the kind words, prayers, and support we have gotten from our friends and family

Typing this on my phone so will keep it short.

Thursdays night watching Dora

Initial Post

Please excuse the haste this was set up. Will clean up as time permits.

I created this to keep everyone updated with Brody's progress as he fights this. This will save us time from having to keep everyone individually updated.

I've talked to some of you about this and I'm sorry for anyone I have not contacted abou this yet. My focus is on my son right now.

My 4 year old son (turned 4 last week) Brody is very sick. He has been in Toledo Hospital since Tuesday March 9th. He developed a bad tummy ache on tuesday morning and went to the doctor. They suspected an appendicitis and sent him for a CT scan. They found a large complex mass in his abdomen which is very likely cancer-- they suspect it is Neuroblastoma of at least stage 3 (the higher the stage the worse). The mass was pressing up against his left kidney and putting pressure on the ureter which delivers urine to his bladder. This was elevating his blood pressure so they admitted him to he PICU (Pediatric ICU) so they could keep a close eye on him.

We still don't know the type or severity of the cancer yet waiting for test results before they decide how it is treated. Most likely they will be doing Chemo first to shrink the tumor size and then remove it with surgery

On Wednesday March 10th he had a bone marrow biopsy taken. The result of this was returned last night and was negative which is good that if he does have Neuroblastoma it is not stage 4. They moved him to a regular room in the oncology wing wednesday night which is alot roomier, quieter, and comfortable and he spent the night there.

On Thursday they worked him into the surgery schedule to have a few things done... they installed a "port" in his chest which is an thing put under his skin in his chest (no dangling tubes) and will remain in there for a while. His chemo drugs will be delivered through the port-- they can numb the skin there when they insert the needle for the chemo drugs so it will be less obtrusive for him.
-- they also installed a tube into his left kidney to drain the kidney since it was being blocked from draining to his bladder.
--they also took biopsies from several spots in his tumor.

He did very well during these procedures but his oxygen was bit low in his blood so they took him back to the PICU overnight. He slept well (as did his dad)