Labs good today..

Brody went in for labs today and they were pretty much ok. His White blood cell count was very low but that is expected at this point after his Chemo last week--- As we mentioned before, this chemo regimen is very similar to what he had every three weeks the last go around with this.... he bottoms out about a week out and then starts improving. He didn't need blood so we were only at the hospital about 90 minutes or so today.

He still isn't eating much and tires pretty easily. He is down to just under 41 pounds (down from 46 pounds a few weeks ago). Hoping he picks up on the eating as his counts improve.

His hair is starting to fall out (not real bad yet) but he doesn't want to let us cut it yet.

He is scheduled for another CT for this Friday to evaluate how this chemo is working.

He enjoyed seeing his Grandma and Grandpa and Great Grandma yesteray--
 

He is taking a nap right now but its about time to get him up for his evening "poke"...

Really not much else to report right now.... when he is acting and feeling well, so do we (and vice versa).

Bill

Brody taking a nap today

Sunday

Brody has been feeling "relatively" well however he gets tired very easily and when he is tired it amplifies his crankiness. He had late afternoon/evening naps the last 3 days (he is sleeping now). He enjoyed his cousins and aunts and uncles visiting this weekend. We tried to squeeze some fun in when we could but unfortunately they had to go home... Grandma and Grandpa and Great Grandma are coming up tomorrow to visit.

We have struggled to try and get him drink enough. I guess he got lazy drinking when he was hooked to an IV last week. He has continued to get some blood in his urine both in his nephrostomy tubes and when he pees-- not a lot but it is still red tinted-- this has us concerned. It is normal to have some of this after getting the nephrostomy tubes but we were expecting it to have cleared up by now. He is still not getting much out of his left side however since he is urinating, it may be producing more then we think and is passing though his ureter to his bladder instead of out his tubes-- hard to know for sure. We are still struggling to get used to having 2 nephrostomy tubes (the one last time was more then enough to deal with)

He still doesn't have much of an appetite-- we are struggling to get him some nutrients in the limited food he does eat. He fills up pretty fast.

He seems to feel ok when he is rested and isn't having any pain. He has managed to take his oral meds ok although it does cause him some anxiety-- it took about 30 minutes to get him to take his Bactrim last night. We have re-instituted our reward system for him to help with taking the meds-- we will be stocking a prize cabinet and he gets a playing card worth 25 cents each time he has to take an oral med or get a poke. He did real good with his meds last time around but I don't think he remembers how well he did-- we do recall having issues with him getting used to doing them at the beginning.

Trish and I are tolerating this as well as can be expected. I've lost about 12 pounds in the last month. I haven't slept well since all this went down-- I can fall asleep ok, but wake up after 5 or 6 hours--- Ironically I think I got more sleep when Brody was in the hospital. Trish is the opposite-- she has trouble falling asleep but does ok after she does fall asleep.

Geordi and Jaden seem to be ok-- I'm sure they are at least somewhat jealous of Brody getting his way most of the time again. They are up the street at a friends house right now while Brody and Trish take a nap.

We do want to once again thank everyone for all the gifts, assistance, and prayers we have received as we go through all this. It has made this very trying experience that much easier to deal with.

Bill

Brody Feeding Deer at African Wildlife Safari

Watch "Playing Just Dance" on YouTube

Brody Enjoying the Day

Brody had a lot of fun today after making the escape from the hospital.  He played for awhile with his cousins in the backyard.  Then we all took a trip to the park.   Brody had a blast at the park.  We went to Whitehouse park and played there for a bit and then we traveled to Grand Rapids, OH and played at the park there also.  We took a short hike to the dam in Grand Rapids too.  Brody enjoyed watching the water rush over the dam and his brothers and cousins goofing around.  Once we got back home Brody was exhausted.  He took a nap for a few hours and then he woke up and was ready to play some more.  He played Just Dance for Wii with his borthers and cousins before they all had to go to bed.  After they went to bed, Brody stayed up for a bit longer and ate some Cocoa Pebbles and then some Ramen Noodles before heading to bed himself. 

 

Watch "Riding the Merry-Go-Round at Whitehouse Park" on YouTube

https://www.youtube.com/watch?v=0y7UDsTMl9U&feature=youtube_gdata_player

Feeling Strong Enough to Attempt the Monkey Bars today

Brody just recently had gotten strong enough to make it all the way across the monkey bars at most parks.  Lately though there is no way he would have been able to even attempt the monkey bars.    Today he felt strong enough to want to try out the monkey bars at the park.   He made it through the first couple bars before having to let go.  

Enjoying the day at the park with his cousins

Brody is Heading Home Today

We are still at hospital now but Brody is headed home today.   Just gotta get all his prescriptions and home care stuff lined up.  Brody slept good last night and is still sleeping this morning.   His Aunt Julie,  Uncle Jason,  and cousins Ella and Ava got in from Chattanooga TN very late last night.   I am sure Brody will be excited to see them today.  
Brody will be back to the hospital again on Tuesday for labs (and more blood,  if needed).  

We are so lucky to have such wonderful support from friends,  family,  our community,  and even folks from afar we haven't been lucky enough to meet yet.   We are so thankful for everything folks have done for us.   To feel the love and caring of so many people praying and hoping the best for Brody and all of us is wonderful.   Truely renews your faith in humanity and goodness,  kindness,  and love there really is in most people.  

Hope everyone enjoys their Memorial Day weekend.   We are of course very excited that Brody is coming home for the weekend.  

Brody is feeling good today

Brody is feeling pretty good today.   He slept all through last night.   He has not had any pain medication today and has been moving around well even with his nephrostomy tubes in tow.   He is using his bear backpack to hold the bags that collect the urine coming through the nephrostomy tubes.   He has been busy visiting and playing with his friend Lucy and his brothers.   They've made play-doh creations,  played matching games and are playing Super Smash brothers on Wii.   Barbie brought over a bunch of cards made by the boys' classmates for each of the boys.   They really enjoyed reading each one.   Their classmates made some really cute cards.   Very sweet.   Brody lost his front tooth this week.   The other front tooth is getting very loose too.   Brody got a certificate from school (believe from his teacher for the lost tooth)  and they also found him a small Hulk tooth holder which will come in handy for the next tooth.   Brody was very excited for the tooth fairy to have visited the hospital this week.  

Brody's hemoglobin is low today (from the chemo he received Monday).   Brody will be getting blood transfusion here soon. 

It has been greater than 24hrs now since Brody has had a fever.   He got his last dose of IV antibiotics this morning.  He will be monitored here at the hospital today.   As long as Brody does not have any more fevers,  no pain,  and is feeling ok,  he will get to go home from hospital tomorrow.   YAY!!

Keep praying that  this time the chemo is gonna work and Brody continues to improve.   Feels sooo good to see him feeling so much better today.   My happy little boy is back.  

Thursday--feeling better

Brody feels relatively well today.

Brody was pretty tired yesterday and slept a good portion of the day. He did perk up in the evening and played some Wii with his brothers and we watched the rest of the movie "Twister" which is one of Brody's favorites for some reason. He didn't eat anything yesterday until last night (still having nausea from the chemo)-- he ate about a 1/2 piece of pizza.

His left kidney is not producing much urine out of his nephrostomy tube.... almost all his kidney function is in his right now. Brody already had decreased kidney function in his left from his radiation therapy as part of his initial treatment 2 years ago-- it could be further reduced from his tumor pressing against the left kidney and occluding the blood supply to it.

He has had pretty frequent small bowel movements since the weekend. The doctors think it is possible he has a partial bowel obstruction from the tumor pressing against his bowels and only a little bit is getting past it at a time. The docs want him to take some miralax but he slept a bunch yesterday, and had some nausea and didn't like the taste of it as it didn't dissolve very well so he didn't get much yesterday.

Today he ate a little bit of breakfast--eggs and banana and has been sipping his miralax (which got dissolved in hot water before being mixed with his hawaiian punch this time) and he seems to like it better-- no grit.

He did sleep all night last night-- (11 to 7 am) which is a rarity at the hospital... and when Brody sleeps well, so do we.

We just found out that Brody needs blood.... which should give him some more energy.

Me and Trish are doing ok-- I've been here since Saturday night when Brody got admitted... Trish has stayed the last 2 nights when we had someone to watch the boys.

We are hoping to be able to go home tomorrow-- Brody doesn't have a fever now and he doesn't seem to be having any pain. He just got weighed and weighs 44 pounds-- only a pound less then when he was admitted however this just could be mainly from changes in how hydrated he is now as compared to when he was admitted-- he was walking ok around the ward.

Enjoying him feeling somewhat normal.

More later

Play room

Brody's anesthesiologist removed Brody's loose top front tooth on tuesday. Tooth fairy did visit that night.  Boys are playing across the hall in the play room. He is feeling good now..  No pain meds since last night.

Sent from my DROID X running Android 2.3 (Gingerbread)

If you would like to help out, here is a link to a care calendar that has been set-up by friends and family

I know a lot of you are offering to help in anyway you can and I know Bill, Tricia, and her family really appreciate all of your support.  Right now it is hard to figure out exactly what everybody needs because things are changing every day.  Tricia's cousin Shawnda and I (Barbie) have created a calendar to help address some needs we are aware of currently.  We will continue to add to it as any needs arise.  If you would like to log on, each day is listed as to ways you can help, whether it be a meal, or something else.  If there are any questions, both of our names and phone numbers are listed and please don't hesitate to call us.  There is also a link to the blog that Bill and Tricia keep updated with Brody's progress.  Again, we thank you for your support for their family and continue to ask for your prayers.

www.carecalendar.org

Calendar ID:  113529
Security Code:   2874

Thanks,

 

Shawnda and Barbie

Brody's Case was NOT Reviewed Yesterday at Sloan-Keterring in New York City

We just heard from our oncologist here in Toledo that Brody's case was not reviewed by the Tumor Board at Sloan-Kettering yesterday.   They said the surgeon (who is one of the main persons needed to review the case) was not able to attend the Tumor board meeting yesterday.   They plan to "try" to review his case next week.   They said that at this point they have to wait to do surgery anyway because Brody just had chemo on Monday that will cause his blood cell counts to plummet.   Brody has to recover from chemo first before surgery could happen.   It takes 2 to 3 weeks for his blood cell counts to come back up.   We had to start the new chemo regimen because the tumor was not responding to the old one and growing very quickly.   We could not wait any longer on the surgeon to review it and there was still high chance the surgeon would say it was inoperable anyway.   So we gotta hope and pray that the chemo works this time.   If the tumor is responsive to the chemo then it is likely surgery would be delayed and we would continue to shrink the tumor as much as possible first before doing surgery.  

Brody has still been spiking fevers also.   So far no positive cultures yet in blood or urine.   Not sure what the infection source is yet.   Could just be a virus of some sort too.  

Brody has 2 nephrostomy tubes now.   The right side has been draining quite a bit of urine into his nephrostomy bag.   The left side is only draining a little bit of urine.   An ultrasound he had this morning showed no back-up of fluid around either kidney so the nephrostomy tubes are functioning well and doing their job.  The kidney is just not in very good shape at all and not doing much.   Right side is still going strong though thanks to the nephrostomy tube.  
Brody is feeling ok today.   Not a lot of pain.   He still has no appetite and is nauseated at times but at least no really bad pain.  

Feeling somewhat better

Brody had alot go on since yesterday.  Got his new chemo..  Tolerated pretty well.  He did have another fever last night,  he couldn't keep down tylenol they gave him due to the nausea from the cyclophosmide he got earlier. He woke up to go potty about evert 2 hours or so

Today, Brody got nephostemy tubes placed in both kidneys and while he was under they took several biopsies of his tumor.  He did fine with the procedures.  He has gotten out of bed and went potty a few times.  His left nephostemy tube is not putting out much urine.  It is a small line so we suspect it might be clogged or it is possible that it is not functioning now...  This was his already bad kidney.

He is feeling more comfortable now... He felt well enough to send me (Bill)  out to little ceasars for a sausage pizza...  He did eat a full piece.

He decided to turn in early as should i.  Thanks for all the thoughts and prayers

Bill

Sent from my DROID X running Android 2.3 (Gingerbread)

Tumor is not responding to chemo regimen and has nearly doubled in size in the last 2 weeks

Brody had an ultrasound done yesterday that showed fluid starting to accumulate around both kidneys now rather than just left side.   The worry was that this is result of tumor growing in size and pressing against right kidney now too.   Brody had CT scan this morning to assess the situation.   Unfortunately it confirmed that the tumor has nearly doubled in size in just the last 2 weeks.   It is pressing against both kidneys,  blocking both ureters and,  compressing the bladder.   He is also having very hard time with bowel movements.   Brody feels ok right now,  he only has pain right now when trying to pee or have bowel movement.   He has no appetite (tumor pressing against stomach too).   Brody will be starting completely different chemo regimen today.   He will start Vincristine,  Adriamycin,  and Cyclophosphamide.   He has had the Vincristine and Cyclophosphamide but not the Adriamycin.   The tumor board at Sloan Kettering is reviewing Brody's case tomorrow.   We are hoping and praying Dr LaQuaglia sees a way to perform surgery sooner rather than later.   The fear is that again the tumor will not respond to the chemo and doubles again within weeks.   Brody's body will not be able to withstand this.   If there is a way to do surgery,  make no mistakes about it that at this point it will be extremely agressive and life-threatening.   His oncologist here stated the big question is "will Brody respond to new chemo or not? "  "Do we proceed with a surgery that has a high risk of resulting in death or do we try chemo that may or may not work and if it does not he will surely die? "  If he can survive the surgery it is his best chance of surviving.   But will he survive?  

There are no words to describe how I feel right now.   Impossible situation.   I am so scared of losing my child but far more scared of watching him suffer and suffer and slowly die.   His doctor today said "there will come a point when you will have to ask yourself if we are doing things for Brody or to Brody."  Those words are haunting me right now.  

We may have very few days left with Brody.   I pray we somehow pull through this but in reality I may lose my child very soon.   Pray,  pray,  pray and pray some more!  

Brody Was Admitted to Hospital Tonight

Brody has been extremely tired the past couple days (and really most the week).   It's normal to expect a child on chemo to be tired,  I know.   But he has just been beyond tiredness level I remember before.   Last night he also had some low grade fevers (99. 7 and 99.8).   This morning he woke up looking and acting more energetic and he even asked to go to Sylvania Playland.   We took him to Sylvania Playland but he was having to stop and rest several times while we were there and I know he so wanted to play harder and keep up with his brothers in a game of tag there but be just couldn't do it.   He looked exhausted when he got home.  Then he went to the bathroom and was complaining it hurt when he pees and said that he "can't get all his pee out. "  He also is fighting eating anything the last couple of days.   He has lost 1lb this week.   After he complained about it hurting when he pees I checked his temperature.   It was 100.2.   I called Brody's oncologist.   He told us to go ahead and bring Brody to the hospital.   They drew a bunch of bloodwork,  took a urine sample,  and have Brody started on IV antibiotics.    They said Brody will stay at the hospital for at least the next 48hrs.   They will keep checking blood cultures and urine.   So far the urine sample did not show increase in white blood cells.   We will not know what blood cultures show for at least 48hrs.   Brody's hemoglobin,  hematocrit,  albumin,  calcium,  and protein were all low.   White blood cell count was normal but the differential was not back to calculate ANC.   The PA who was part of hospitalist staff examined Brody this evening and did not note any obvious source of infection from the exam.   She did say the lymph nodes in his neck were swollen.   She noticed he felt pretty warm while examining him and ask the nurse to check his temperature again.  It was 101.5.   Brody's doctor will be by to see Brody in the morning.   We don't really know yet what is causing the fevers.   Hopefully it's just a mild virus of some sort that quickly runs its course and Brody is feeling better soon.    Just in case it's bacterial and since he is on chemo he is getting IV antibiotics for now.  

Will update with more info when we know more.

Pic Brody Took of Evan (our neighbor and Brody's little buddy) and Tori

 

Pic Brody Took of Geordi

 

Pic Brody Took of Tori, Leia, and Chewy

 

Pic Brody Took of Leia

 

Taking One of Many Long Naps this Week

Playing Zhu Zhu Pets Game with Brothers

Brody Taking Nap with Chewy

Sloan-Kettering is reviewing Brody's case on Tuesday

I called Sloan-Kettering again this morning looking for an update as to when Brody may be seen at Sloan-Kettering.  I was told that Dr. Wexler and Dr. LaQuaglia will be reviewing Brody's case in their Tumor Board meeting on Tuesday.  And, then after this review they would contact us to schedule Brody to be seen at Sloan-Kettering.  YIPPEE!! We are moving forward! 

 

Brody continues to do ok with handling the chemo he has started so far.  He is very tired and napping a lot and he is experiencing some diarrhea but nothing really severe.  He has been having intermittent extremely painful belly aches that I do not believe are related to the chemo but more so from the tumor itself.  Generally, the episodes occur a couple hours before he needs to have a bowel movement.  I think the tumor is making easy passage of bowel through his gastrointestinal tract extremely difficult.  It is so difficult to see him in so much pain and not be able to do more to help him.  Fortunately these episodes have not been lasting for very long periods of time.  Generally last about 5 mins or so each time it happens.  But 5 mins is a VERY long time to be in tremendous pain. 

 

Brody hasn't felt like doing much besides watching TV, playing video games, and board or card games, and reading.  Brody has been cudling up in his Hulk blanket and take some long naps.  Nurse Amy from Brody's school made him a very nice, large felt Hulk blanket.  It's Brody's favorite blankie now.  Thank you, Amy!  He also got a new giraffe, giraffe book, and a Hulk figurine.  He will not let his brothers play with the Hulk figurine and has been very careful not to keep it where the puppies might get a hold of it.  Amy told him to keep the mini-figurine in his pocket to summon Hulk strength.  Brody thinks this is a pretty good idea. 

 

 

Brody bone marrow results came back all clear. YAY!!!

We have good news to share.  Brody's bone marrow results came back all clear.  YAY!!!!  We are working today on trying to get an appointment at  Memorial Sloan-Kettering for later this week.   Memorial Sloan-Kettering wants to talk to our doctor here in Toledo first before deciding when is best for us to schedule to be seen at Memorial Sloan-Kettering.  I am hoping they agree that sometime this week is good.  I want to get "all our ducks" in a row so to speak so that we are all ready and established at Memorial Sloan-Kettering when it's time for surgery. Plus I am anxiously waiting to hear second opinion on how to proceed in general for Brody's treatment.  Brody is feeling good this week and he does not have to be back at hospital for rest of the week.  So I would like to travel to New York City while Brody is feeling ok and we have a break in chemo.  He will be at hospital next week receiving chemo Monday through Friday. 

 

Bill is working on fixing Brody's Power Wheels jeep.  Should be up and run again soon I think and Brody will be driving it all over the yard, I'm sure. 

 

Monday

Brody getting chemo and doing some homework (sight words). Feeling ok.

Sent from my DROID X running Android 2.3 (Gingerbread)

Friday

This is a Bill post...

I apologize for not writing much or more often.  Trish has been picking up my slack.

Brody is tolerating his chemo well so far.  We are obviously feeling better emotionally since we are now being proactive...  I wanted to get going 2 seconds after hearing of the relapse but thankfully trish is very meticulous in exploring all options.

Brody is feeling better and better.  He slept good last night.  We have left his port accessed as his chest is pretty tender and it might hurt him to access it each day.  This leaves a short tube hanging from his chest..  It is taped well. He didn't sleep very well the night before because he was tender and worried about it hurting.

We are all doing ok.  We had taco pizza and nachos for dinner last night and the boys played video games. Brody is getting his way more, is feeling well other then a little nausea the other day and is in good spirits.

I have a fair amount of nervous energy so have been keeping busy doing odd little jobs and hanging out with my boys. Geordi and Jaden are probably a little jealous of Brodys extra attention but are being good big brothers.

Just wanted to touch base... Will write more later.

Bill

PET/CT Results Are Back

We got the results of Brody's PET/CT.  His tumor "lit up" and so did the lymph node in his groin close to his tumor that was enlarged with his initial diagnosis.  His doctor said that he can't say for sure if there is cancer in the lymph node just because it "lit up."  He said that that lymph node could just be highly active right now because of everything that is going on in that region but of course it's a possibility that the cancer cells are in that lymph node as well. (PET/CT scan will light up areas that are highly metabolic).   He also stated that it's important to realize the limitations of a PET/CT in that you generally will not see cancer cells light up unless they are fairly large mass and active.  He stated that even though these were the only concerning areas that lit up, that there could still be smaller metastases elsewhere that just don't show up on the PET/CT.  So, we were glad to hear that they did not see several areas all over his body light up but of course sad to hear it could be in his lymph node also.  I have decided to try not to dwell on it too much.  We are doing everything we can to fight this.  Dwelling on things you have no control over is just not going to help anything (nor help with maintaining sanity through this situation).  Instead let's focus on what's good and on what we can have some control over. 

 

Brody opened up a present yesterday while he was at the hospital that was from his classmates, his teacher, and school nurse.  Each of his classmates made him a card.  He has been reading the cards over and over since he got them.  He also got lots and lots of his favorite candies, a Hulk Cup, and Anthony Wayne Generals cup, Hulk DVD, Phineas and Ferb DS game, and an Avengers book.  Brody misses his friends , Amy (his school nurse) and Mrs. Lehman (his Kindergarten teacher).  Hopefully he will feel well enough to come back to school and see them all again before the school year is up and maybe personally deliver a Thank You card to all his best buddies at school. 

 

Mrs. Lehman stopped by our house this morning to bring Brody some things he had made in class for Mother's Day and also a bean plant Brody planted at school.  Brody has been so cute with his bean plant.  He keeps moving it around to different parts of the house so that it gets better sunlight and he keeps sticking his finger in the dirt checking if it needs water and of course watering it also.  We keep asking Brody if he wants to plant it in the ground outside and watch it grow but so far he just wants to take care of it in the little cup.  I think he's enjoying babying his little bean plant. 

 

Brody's bean plant

Watch "Brody opening gift Part 2" on YouTube

https://www.youtube.com/watch?v=PnnxoAJltUI&feature=youtube_gdata_player

Watch "Brody opening gift Part 1" on YouTube

https://www.youtube.com/watch?v=AzeUe2lrS3I&feature=youtube_gdata_player

Brody doing well so far with chemo and gets to do it outpatient now instead of inpatient

Brody is still sore from his surgery yesterday but he is steadily improving on the pain front.   He still does not want to move very much right now but he does at least believe us that if he keeps trying to move even if it hurts that he will start to feel less pain sooner.   He is moving much better than last night and the more he moves the easier and easier it is becoming for him.  

Brody did well with his chemo last night.   He had a little mild nausea and he has been very tired but other than that he has been doing pretty good so far.   And since he is doing well,  after he finishes his chemo today he gets to go home (YAY!).   He will come back to hospital each day for his chemo infusions but will get to go back home after they are done each time.  

Brody had a PET scan today too.   We don't know the results yet.   A copy is also being sent to Dr.  Wexler in New York City. 

Brody enjoying popsicle soon after waking up following his surgery today

Brody Had Surgery This Morning and Started Chemo This Evening

The last few days have been very busy indeed.  Yesterday morning Brody had an MRI of his abdomen.  It was ordered to evaluate if his tumor was pressing against blood vessels in his abdomen and preventing proper blood flow in his left leg.  His left leg swelling had gotten worse over the weekend and so we brought him in for the MRI.  Results showed that he has good blood flow into his left leg but the return blood flow back out of his left leg was almost entirely occluded by the tumor in his abdomen.   So anyhow, the blood flowing into his left leg is much faster than the blood flow back out of the leg.  Fortunately, Brody has grown some "collaterals" (smaller newly grown blood vessels that are bypassing the occluded route; basically Brody's body grew blood vessels to create it's on bypass system) which are helping to keep the situation less severe than it would be otherwise.  The "collaterals" are not nearly as efficient though at returning the blood back to his heart and so his left leg is still significantly swollen.  Somehow, Brody has not had a whole lot of pain from this.  His leg is mildly painful and itchy from the swelling. 

Right now it is very important for Brody to be able to keep the ability to grow this new blood vessels and create his own bypass system.  This means that Brody can not participate in the clnical trial that has the drug I was so worried about him receiving anyway because it works by blocking formation of new blood vessels.  Blocking formation of new blood vessels is a mechanism that makes sense to stop the tumor from growing, but it also meant that he would not be able to have surgery until he had been off the drug for at least 4 weeks and then he would not be able to go back on it again until at least 4 weeks after surgery.  Anyhow with this new development, Brodys' doctor is not going to start Brody on this chemo regimen and instead we are starting Vincristine and Irinotecan.  We can not delay starting chemo any longer while waiting to hear from Sloan-Kettering as to whether they would be able to do surgery to remove the tumor.  The tumor is growing too fast to wait.    So we have started the Vincristine & Irinotecan Window therapy I described a couple posts ago.  The hope that these medications will start shrinking the tumor or at least prevent it from getting larger while we still are waiting to talk to the surgeon in New York City.  Brody will not have to be off these medications for long period before being able to schedule surgery.  As soon as Brody is healthy enough to travel we will finally be able to get our much needed appointment in New York City.  Brody's chances of beating this are better if he can have his surgery sooner rather than later.  So we will still be headed to New York City whenever Brody is healthy enough to make the trip. 

Brody had surgery this morning to place his port (his chemo is delivered through this) and also for a bone marrow aspiration (checking the bone marrow for cancer cells).   Brody is very sore from the surgery and is not wanting to move very much at all.  Bill and I were working very hard this evening on trying to get him to move as much as possible and trying to make him understand that the longer he laid still the more sore and difficult it would be to get moving again.  Brody has a very high pain tolerance.  He does not flinch or complain about many things most kids (and many adults too) would absolutely be screaming about.  Anyhow, it was soooo hard to see him in pain like this.  He was trying to be so patient too and holding in the cries while waiting on his pain meds that were coming so slowly.  But eventually he just couldn't bare it anymore and the tears were coming.  The pain did seem to be easing off significantly when I left this evening though.  (Bill is staying with Brody tonight and I just got home with his brothers a little bit ago).  Brody also just got started on his chemo regimen a few hours before I left the hospital.  When I left he was tolerating it just fine.  No problems were observed yet. Who knows how tonight will go.  Let's pray it's an uneventful night.  Brody has taken Vincristine before and tolerated it ok in the past.  He has not had the Irinotecan before.  Both drugs can cause many, many side effecs.  The most troublesome one for Brody last time with Vincristine was nerve pain.  Irinotecan is known for causing severe diarrhea (and at times fatal diarrhea).  Many precautions are lined up to prevent and manage the diarrhea that will likely be coming from the Irinotecan. 

Tomorrow Brody will be headed to get his PET scan.  They will be checking his entire body for metastases.  I will be headed back to the hospital tomorrow morning after getting Jaden on Geordi on the bus.  Brody wanted his brothers to be able to spend the night with him at the hosptial this evening but unfortunately only parents are allowed to stay with him.  He is also quite bummed that his brothers will be at school during the day rather than with him tomorrow.  Not many days of school left though and we will be sure to get his brothers over to see Brody as soon as they are home from school each day.  Brody will be in the hospital until Sunday.  He will get to come home Sunday night and then he has to go back in next Monday for the day for more chemo.  But he should be back home Monday night and be able to stay home for a week then before going back.  We are not sure what will follow the "Window" therapy yet.  We're hoping surgery followed by more chemo and then maintenance therapy and hopefully never see sight of a relapse again.  Right now we have to take it one day at a time though. 

Thanks everyone for all the prayers, kind words and support. 

Back from Great Wolf Lodge (waterpark)

We all had a good time this weekend. We stayed at Great Wolf Lodge in Sandusky Ohio (about 90 minutes from our house)--
http://www.greatwolf.com/sandusky/waterpark

it has a pretty good indoor waterpark. It's not as good as nor as big as Kalahari (also in Sandusky) that the boys went to in March for Jadens Birthday but they still had a blast. Lines were pretty short and there is a decent variety of water slides-- including a dark tunnel one that the they ended up liking after finally trying it out. Brody's leg and belly (he has had occasional belly aches usually coinciding with bowel movements) did not bother him this weekend-- he looks to be favoring the leg a little but he said it didn't hurt and we had to constantly tell him to not run (all we need is him doing a face plant on some concrete). We got there about 1 pm on Saturday, we did take a break for dinner but did the water park til it closed at 9 pm. Then got down there this morning at about 9:30 and stayed til 3:30 pm.

The boys (but especially Brody) pretty much wore us out.... I'm sure they are sleeping well tonight.

More later....

Change of Plans

Brody had an MRI today of his head.  It came back all clear.  YAY!  We were expecting to start Brody on chemo on Monday but looks like we are likely going to have to wait a little longer.   This wait is killing me.  Brody's doctor here in Toledo said that he spoke with Dr. Wexler on Thursday evening and that they plan to get us scheduled to meet with Dr. Wexler and Dr. LaQuaglia (great surgeon for pediatric abdominal surgeries) at Sloan-Kettering in New York City next Thursday.   The rest of the medical records they need at Sloan-Kettering are due to arrive there on Monday.  Then the team there will need to review everything and contact us to schedule an appointment.  They told our doctor they will likely see us on Thursday and they are looking at the possibility of doing surgery to remove Brody's tumor sooner rather than later.  This part is wonderful news.  I truely hope there is a way that Dr. LaQuaglia sees to schedule the surgery much sooner than would be done by surgeons here in Toledo.   Right now it appears that Brody's recurrence is a localized tumor in the same location as his original tumor.  Obviously, I want the surgery to happen before the cancer is spreading elsewhere (and I am also worried that maybe the tumor won't be very responsive to chemo and it grows larger and the surgery could become impossible).  I very strongly feel that Brody's best chance of survival depends on surgery occuring as soon as it can happen even if it is a more "aggressive" surgery than waiting until the tumor can be shrunk with chemo.  Also, today we were told that a trial that Dr. Wexler has several patients in with embryonal rhabdomyosarcoma is achieving very similar results to some of the standard chemo therapy options we were considering starting on Monday.  I would love to be able to go ahead and just start Brody in this trial so we can start treating him and hopefully begin shrinking the size of the tumor while we are waiting to see Dr. LaQuaglia.  Unfortunately, one of the medications in the regimen would require that Brody be off of it for at least 4 weeks before he could have his surgery and then he would have to wait another 4 weeks before he could go back on the medication.  Considering that it only took his tumor about 8 weeks to get to the size that it is now, that seems too long of a break in chemo to me.  If our doctor were to start chemo with Brody this is the regimen he would want to start because it is receiving similar response rates as standard therapy but with a lot less toxicity and greater tolerability for the patient.  Obviously, I do want Brody to have a regimen that would be more tolerable and less toxic if expecting similar response.  But other regimens we could start would not require such a large break in chemo to accomodate being able to have his very much needed surgery as soon as possible.  I understand our doctor's rationale and I think it's certainly reasonable.  But I have to trust my Mom instincts that Brody needs surgery as soon as it can happen and that I don't think he can afford to be off chemo for 8 weeks.  Unfortunately, our oncologist is not in agreement with me at this point and since we do not agree, now Brody can't start chemo on Monday and we have to wait until we see Dr. Wexler and Dr. LaQuaglia before any actual treament can begin.  We are scheduled to see Brody's oncologist again on Monday for a follow-up and surgery will happen early next week to place his port, collect a biopsy ,  and bone marrow aspiration.  His doctor here as been checking and feeling the tumor each time he has seen Brody this week to assess if tumor is staying about the same size.  He tells us that the size seems to be about the same since Monday (although I am worried that this is not true since Brody is having pain now in his left leg and he was not earlier in the week).  His doctor will feel the tumor again on Monday and will see if Brody is having any further worsening of his leg pain or not.  If not, the plan is to wait to start treatment for Brody until after we travel to New York City for consult.  But if Brody starts to worsen then we will start chemo (but not sure what) within 24 hours.  Again the wait to just get started is agonizing.  Everyday counts.  The tumor is not getting any smaller while we are waiting and waiting.  I will of course be contacting Sloan-Kettering on Monday morning and pleading with them to please do whatever they can to get us in there as soon as possible and hopefully earlier than Thursday.  Wish me luck with that one. 

Today we had planned to head out to the African Wildlife Safari when Brody was done at the hospital.  Unfortunately, the weather did not alow that to happen today.  Torrential rains during the time we had to go.  We did go see Avengers this evening in the theater.   We all really enjoyed it.  Brody has now become an even bigger Hulk fan.  Geordi and Jaden like Captain America the best of all the Avengers.  We are all looking forward to a trip to Great Wolf Lodge tomorrow. 

Brody and Geordi on a rollercoaster a couple weeks ago.

https://www.youtube.com/watch?v=k8CdyBcKx-Q&feature=youtube_gdata_player

Brody has started to have pain in his left leg

My heart sank this morning when dropping Brody off to school for what may be his last day of Kindergarten.  At first because I was thinking this may be his last day.  Then, I was saddened even more when I saw him limping and grabbing his left leg as he was trying to run to keep up with his brothers.  We saw Brody go through this as his tumor grew the last time.  As soon as I saw this I was definitely thinking, "Oh no!  The tumor is growing so fast already that it's pressing against that nerve again."   Brody was still limping after school and he says it hurts to run and when his teacher asks him to sit "criss-cross applesauce."  I have just been sick to my stomach all day.  I can't believe how fast the tumor is growing.  So scared. 

I was really hoping that we would be able to consult with Dr. Wexler before Brody is scheduled to start treatment on Monday.  Unfortunately, not all of his scans, tests, pathology reports etc. etc. etc.  had been received yet by Dr. Wexler in New York City from our hospital here in Toledo.   Dr. Wexler will not consult with us/provide us with his treatment recommendation until after he has received all of the tests etc he requested and then they must be reviewed by the team in New York City which takes a couple of days once they have everything.  Then finally they will contact us to schedule an in-person appointment.  If we were to wait to start treatment for Brody until after consulting with Dr. Wexler, it would delay Brody starting therapy another week at least. 

After seeing Brody already progressing to having difficulty walking and not being able to run, my gut is absolutely screaming that there is no way we can delay treatment.  We will proceed with starting treatment for Brody on Monday.  We will most likely be starting a "window" treatment of irinotecan plus vincristine (will find out for sure after Brody's MRI of his head results are back.  He is having MRI on Friday morning to verify no tumors in the head).    Brody took vincristine to treat his initial tumor.  Irinotecan will be new for him.   He tolerated the vincristine ok last time although the neuropathy was problematic but manageable.  Irinotecan has many side effects but probably the most pronounced is severe diarrhea.     A "window" treatment is a short duration of chemo to be used before the longer ongoing regimen that will follow.  Brody will likely receive the irinotecan daily for 5 days the first week and he will receive Vincristine once a week (on Mondays).  The second week would be Vincristine on Monday and no irinotecan during second week.  This 2 week cycle would repeat 3 times for a total of 6 weeks of "window" treament.   My plan is that during one of the weeks that Brody is not getting the irinotecan, we will travel to New York City to meet with Dr. Wexler for second opinion as to the next steps for Brody following the "window" treatment.  This plan was discussed between myself and Brody's oncologist here in Toledo today.  Brody's oncologist stated that he would call Dr. Wexler today (Thursday) and ask some further questions before committing to this as overall plan (Dr Wexler has been answering our doctor's specific questions but is not coming right out and saying, "do this).  Our doctor stated that he will give us the plan after Brody's MRI tomorrow (Friday).  So far as I know right now, the above described is our plan but could find out tomorrow it will be something different.  But it is firm that Brody will start treatment Monday.  He will have surgery to get his "port" placed again and start chemo on Monday. 

After school today, Brody had fun playing video games with his brothers.  He was getting frustrated trying to play with his brothers outside.  He was not able to run without it hurting and was walking with a significant limp.  He was just having a hard time trying to keep up with his brothers.  Fortunately, riding his big wheel was not hurting him and so he enjoyed that for quite some time.  He also came and hung out with me on our big bench swing and also had me giving him several "under dogs" on the play set as well.  While Brody and I were chillin' together today on the play set though he asked me something that I just did not know how to respond to and I wish I would have had something more brilliant to say in return.  But I still don't really know what would be best to say.   He asked me, "Mommy, if I die, can you die too so you can be with me?"  I started crying immediately.  Totally lost it.  I have been trying sooooo hard to NOT cry around Brody or his brothers and put on a brave front.  Once I stopped crying, I said, "Brody you're not going to die. Mommy is so sad that you have to fight cancer again.  It's a very hard fight but you are so strong and tough, you will beat it again."    Then he said to me, "But Mommy, it's in my leg already.  My leg hurts, it's already in my leg too."  Again, I CRIED!  Then I calmed down and said, "I hate that you hurt; it makes Mommy so sad.  When I am sad it's hard not to cry.  But Brody please don't worry about your leg.  The cancer is not in your leg. It's the tumor in your belly pressing against nerves that run to your leg.  This happened to you last time too.  But then you finally got enough medicine to shrink the tumor and your leg got better.  You are going to the hospital on Monday to start taking medicine to shrink the tumor.  The medicine will probably make you feel very sick for awhile but it will shrink your tumor.  When it's a little smaller, you will get surgery to get the tumor out.  Then they will give you more yucky, make you feel sick medicine for awhile after that to make sure no more tumor comes back."   He smiled and me and my sweet little boy cuddled and enjoyed each other's embrace.  Later in the evening  Brody was talking to his Dad though and I guess I didn't explain very well the first time that the cancer wasn't in his leg.  He told his Dad the cancer was in his leg.  Again I tried to explain it almost the same way.  And, Brody says, "what are nerves, Mommy?"   Then I'm thinking, "yes, a six year old really wouldn't know what nerves are yet, I guess."  So I explained this.  A few minutes later Brody was talking to his Papaw on the phone  and I heard him telling him, "I'm doing ok, it's just my nerves are messing with my leg."   I started laughing and said, "oh Brody, you are sooo cute."  

Since we got a weekend off before Brody starts treatment on Monday, we have planned some fun adventures for the weekend.  Tomorrow(Friday) after Brody's MRI, we are going to take Brody, his brothers (gonna pick them up early from school), and Lucy (our neighbor and Brody's best buddy) to African Wildlife Safari so Brody can feed the giraffes (one of his favorite things to do).  Then we plan to all go watch the move, "Avengers."  On Saturday we are headed to Great Wolf Lodge. We will play there all day on Saturday, spend the night and play there some more Sunday morning and head back home Sunday afternoon. 

Well, it is getting quite late.  I better at least attempt to sleep (extremely difficult for me lately) so that I will be rested for a weekend of fun.   

I can only echo what Trish wrote about how we feel. I hardly slept at all on Monday night (I maybe got 2 hours of sleep total-- it seems I was up the entire night with thoughts running through my head) and I can usually sleep no matter what. I am still in shock. We are all dealing with this a well as possible. While Monday was horrible with the news-- Tuesday was much better. We kept Brody home from school tuesday as we had to collect his urine for 24 hours for a Creatinine Clearance test (don't ask me exactly what it is, only that it is to measure his kidney function)-- So Brody and dad got to hang out all day-- he made me play video games most of the morning (and pulled me through alot of the levels in Toystory 3 on our Playstation 3)-- I finally got him off the couch and we went to McDonalds for lunch the park and played for a couple of hours. Trish showed up about 2:30 or so and we played a bit longer til we had to go home and get Geordi and Jaden off the bus-- we went back to the park later so Brody could show his brothers how he could make it across the monkey bars by himself (most of the time)....  Brody is feeling well right now-- and we are enjoying just spending time with him, he is such a blast to be around. When he resumes his treatment he isn't going to be feeling as well (at least some of the time).

I can't explain how feel at this time-- I am dealing with this as well as I possibly can and am trying to be a rock for the family. I really don't want to talk about it much at this time as it is painful to me to just tell people the news.... But I don't want to anyone to think that I am depressed or anything---I can't help but be happy when I am with Brody.

Trish has been pouring over studies and treatments that I couldn't begin to understand .... as you can imagine after reading Trish's post we are exploring all options to try and improve Brody's outcome.

We plan on having as much fun as possible this weekend--- We plan on seeing the Avengers (we recently watched the Captain America, Incredible Hulk, and Thor--we had seen Ironman 1 & 2 a while ago) this weekend and maybe a waterpark.

Trish is taking time off her job. I plan on continuing to work my normal shift rotation like I did last time with some modifications as necessary as the needs arise based on Brody's treatment-- My employer has said they will work with me as necessary. Which obviously makes it easier on us and for this I am very thankful..... if anyone is interested this is where I work.... http://www.northstarbluescope.com/ (I've been here 15 years-- I can hardly believe that!!)

Well I think that is all I have to put up right now-- we will obviously be keeping this updated. Thanks to everyone that has followed this and it does give us some comfort knowing that we are in people's thoughts and prayers.....

Bill

Here We Go Again

Brody had a CT Scan on Monday,  April 30th.   We got the devastating news shortly after that Brody's cancer has returned.   Recurrent rhabdomyosarcoma has extremely poor prognosis.   Brody had very aggressive treatment with his initial diagnosis.   The current standard treatments for recurrent rhabdomyosarcoma have outcomes of less than 50% survival at one year from relapse and less than 10% at five years.   We have decided we must consider investigational options.   I have been very busy researching any possible treatment options available and deciding pros and cons of each.   I feel I have a decent understanding of available options at this point.   My next step is to call to schedule Brody to be seen at Memorial Sloan Kettering hospital in New York City.   Dr. Wexler at this hospital is recognized as an expert on rhabdomyosarcoma and especially recurrent rhabdomyosarcoma.   I definitely want his input and second opinion on how best to proceed for Brody.    As far as we know at this point,  Brody's has one localized tumor that is 5 x 3cm and is in the same location as his original tumor.   For comparison,  his tumor was much larger than this when he was initially diagnosed.   His original tumor had to be shrunk with chemo before it could be surgically removed.   Just before this surgery his tumor was 4 x 3cm.   So right now,  his tumor is a little bigger than it was last time before they removed it surgically.  We have not been able to find a surgeon in Toledo yet that is willing to do surgery yet to remove the new tumor.   Studies show surgery and even aggressive surgery is extremely important for his chance of survival.   The surgeons at Memorial Sloan Kettering hospital will be reviewing Brody's case to see if they would be able to operate.     Brody is scheduled to start treatments on Monday.   Dr.  Wexler and Dr. Strunk (our oncologist here in Toledo) are communicating back and forth via phone calls and email regarding next steps for Brody.    Treatment cannot be delayed until after we can be seen in New York City.   His tumor is very rapidly growing (it was not at all visible at his last scan on Jan 25th).   The initial treatment has not yet been decided but of course will be before Monday.   As part of starting treatment,  Brody will be having surgery Monday to have a port placed again for him to receive his treatments through.   I am still in such disbelief that this is happening.   I am soooo angry!  So powerless to stop this.   Why!?  Why!?  Why!?  CANCER SUCKS!
Sorry to my friends and family that have been calling to talk to us about how things are going.   I have not been emotionally stable enough to answer my phone.   I can't talk about all this stuff yet without crying.   I can't even speak when I do start crying.   Please know that we all know we have family that truely loves and supports us.   And I know you are all praying for us.   And,  of course,  it's very much appreciated.  
I so wish I was posting we got another clear scan.   Just cannot believe this is happening. 
I have a feeling I am never going to fall asleep tonight.   Brain please shut-up for just a little while.   I need some zzzzzs.