Brody is home

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Going home later?

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

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

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Solid food

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

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Playroom

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Playroom

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Brody walked to play room

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

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

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Out of bed

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

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Brody is making progress

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

Friday evening

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

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

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

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

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Thursday night 2:30 AM

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

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

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

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

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

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

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

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

More later...

Brody settled in the ICU after surgery

Brody is out of surgery

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

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

Brody doing well in survery so far

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

Brody and his pal getting prepped for surgery

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

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

Surgeon says Brody's tumor is resectable now

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

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

Brody enjoying the hot day in his swimming pool

Brody's CT scan results so far

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

Going home

Brody's doctor just said he can go home.... I'm letting him sleep in... as soon as he wakes up they will remove his port access and we are out of here.
He slept good again last night other then having to pee a few times because of the iv....
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Brody is doing better and will hopefully be able to leave the hospital tomorrow

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

Brody had a rough time with his chemo this week

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

 

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

Storms tornadoes

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

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

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

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

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We had a fun day in Port Clinton Ohio today.

At the river after chemo

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

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Tuesday Evening

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

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

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

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

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

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

Bill

Appointment with Radiation Oncologist

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

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

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

 

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

Brody riding camel at African Wildlife Safari Park

BRODY RIDING PONY AT AFRICAN WILDLIFE SAFARI PARK

Brody feeding zebra at the African Wildlife Safari Park