Pretty uneventful week. Brody's side pain has persisted but is not to frequent. As Trish mentioned the CT showed the tumor to be looking the same. Brody seems to have recovered from his C. diff infection-- he had some persistant diarhea but it has subsided and we are back to giving him Miralax to keep his stools soft as it can be painful to pass them if they are too hard.
Brody's weight is up to almost 44 pounds now-- he was down to less then 40 a few months ago and his appetite is pretty good most of the time although he is still kind of finicky... he had me bring him a McD's cheeseburger with fries for dinner yesterday and he chased these with 2 pieces of french toast (ate it all).
To try and increase his nutrient intake Trish bought a good juicer last week-- Brody seems to like to make the juice but doesn't care to drink it too much-- everyone else loves it-- I think it might be more of the "pulp" in the juice (texture) rather then the taste of it. Hopefully it will grow on him. We have explained to him that drinking it can help him fight the cancer so he has been drinking it anyway.
Thats pretty much it... we have been continuing to homeschool the boys and other then a few behavioral hiccups-- all is going pretty well with that... There is actually quite a few educational videos on Netflix that we have been utilizing to help supplement our science and history.
Saturday, October 27, 2012
Thursday, October 18, 2012
Brody's CT Scan Today Showed Brody's Tumor is Staying About the Same Size
Brody has been having pain on his right side (not on his back or belly) right over his right kidney. The pain is not constant but rather comes and goes but is always in the same spot. Brody pointed to the spot where it hurts during an ultrasound and the ultrasound tech moved the wand over the area he stated was hurting. His right kidney was in that area. Brody still has nephrostomy tubes on both sides. His right kidney is his good kidney and his left one does not seem to have very much function. The doctor ordered a CT scan for today and also a nephrostogram to try to determine the cause of the pain Brody keeps having. The CT scan was ordered to get a picture of whether the tumor has changed or not. The nephrostogram was ordered to determine if the tubes are still in place where they should be or not and to gage how obstructed or unobstructed his ureters are. The CT scan showed that the tumor is about the same size as it was last time according to our oncologist but it has not yet been reviewed by the radiologist. The nephrostogram showed that the tubes are placed correctly and that no stitches have come loose that would allow the tubes to slip or wiggle and cause pain. They did not see the dye flow through the urterers to the bladder though which means, in the position Brody was laying, at least for this test, his ureterers are likely still obstructed. Brody has had his tubes in for awhile now since being replaced the last time. They plan to replace the tubes again within next couple of weeks. They will evaluate again at that time if Brody's urterers are still obstructed or not.
So we didn't get any really bad news today and I was relieved to hear the CT scan results. But we still do not have an answer as to why Brody keeps repeatedly and more frequently having recurring sharp pains in the same spot. Interventional Radiology staff decided to try doing the dressings around his nephrostomy tubes a little different though to see if this change could help the tubes move around less in case the little bit of wiggling he does have with the tubes is causing the pain. He has not complained of the pain since they changed how the dressings are placed around the tube. Hopefully, this is why he has been having the pain and the new way of doing the dressings helps.
Tuesday, October 9, 2012
Brody Has Been Feeling Very Good Despite C. Diff. Infection
As Bill indicated in a previous post, Brody has been dealing with a C. Diff. (clostridium difficile) infection. This type of bacterial infection of the gastrointestinal tract is more likely to occur and can be very dangerous in patients that have had lots of previous antibiotics exposure and/or compromised immune system function. Brody has definitely been exposed to many antibiotics recently and his immune system is weaker than most due to the chemo he must take. Without the competition from healthy gut flora (beneficial/healthy bacteria that line the gastrointestinal tract) that have been killed off by multiple antibiotics, the c. diff. bacteria can easily overgrow and cause significant harm to the gastrointestinal tract. The bacteria releases a toxin that breaks down the cells of the gastrointestinal tract and can cause severe diarrhea and vomiting. Brody has been taking an antibiotic called Flagyl (metronidazole) every 6 hours since he was diagnosed with a c. diff. infection. Overall, fortunately the diarrhea has not been too bad so far and vomiting has not been a problem. However, each bowel movement had been fairly scary since each involves pain and some blood in his stools. Today, though I did not observe any obvious blood in his stools. Hopefully this means he is about to kick this c. diff. infection. I have heard and seen a few horror stories associated with c. diff. which of course means I've been a little more worried than usual this week. Obviously I try not to let my worries of what could happen keep us from enjoying each day though. If Brody feels fine (and he has, really) then we just try to live or lives, have fun and not let our worries intefere with it all. Life, unfortunately, is just to short to dwell on things you cannot control. Sometimes you just have to tell yourself everything is going to be just fine and commit yourself to believing that and then somehow it just seems to be just fine. The power of the mind and concentrating on the positives can be amazing.
Monday, October 8, 2012
Visited Ruby Falls Today for Geordi's Birthday
We celebrated Geordi's 10 year old birthday at Ruby Falls today. I had taken Geordi and Jaden there once before about 5 years ago but they couldn't remember it very well and so really wanted to go again. It was a rainy, cold day in Chattanooga today so this adventure moved to the top of several ideas of things he wanted to do on his birthday. I still can not believe he's 10 already. Where has the time gone?
We had a great time at Old McDonald's Farm
We enjoyed the day at Old McDonald's Farm. Hayride, awesome slides, picking pumpkins, corn maze, hay maze, pumpkin slinging, inflatable horse racing, and spending time with family all equates to a wonderfully fun afternoon in TN.
Brody had a great time on the slide with his cousin Ava
Brody and Ava rode this slide together only about 100 times.
Saturday, October 6, 2012
Pics
More of his pic posing day-- on Maumee River near Grand Rapids Ohio... about 10 minute drive from our house
Another Busy Week
We all had another busy week. As always, Homeschooling the boys is a chore and a joy. Easy and fun when they will listen, frustrating when not.
Brody's right nephrostomy tube was capped until wednesday. On wednesday Brody didn't feel too good. He vomited and was tired and wanted to take a nap-- we went ahead and hooked his nephrostomy bag back up to his tube (in case this was making him feel bad). When he woke he had a slight fever-- almost 101 which had us nervous enough to call Brody's Oncologist and get Brody admitted Wednesday night-- they took blood, urine, and stool cultures-- by the time he got to the hospital his fever was gone and he was feeling fine. Him and Trish got to bed about midnight.
His blood and urine came back fine but his stool showed a potentially dangerous bacteria (Trish can tell you more about this if she gets time)-- so they started him on an antibiotic that works well on it. His counts were low (normal low for the chemo he has been on) but not so low he couldn't start his next chemo round. Since he was feeling fine and his counts were high enough they gave him his normal IV chemo on Thursday rather then hanging out late in the day on Friday too. Dad (me) stayed the night on Thursday night-- the doctor wrote his discharge out about 8 am Friday morning and we just had to wait for Brody to wake up to get out of there-- he woke up about 10:45am (he was up till almost midnight thursday watching Phineas and Ferb) and we were out of there before noon.
He did have an ultrasound of his kidneys on Thursday but we did not expect any hydro nephrosis (water around the kidney) since he had his bags back on. We will likely try capping them again in a week or so.
Brody is feeling fine but has to take an oral antibiotic every 6 hours which has a bad after taste-- he hates it but our tough guy takes it without a problem... he has been chasing it with "red stuff", grape juice, and goldfish crackers to get rid of the taste. Thankfully the amount he has to take is small (3 ml)
He has been feeling fine since Wednesday evening.
Trish's post about Brody's words reminded me of his other Brodyisms for his meds... which we use with him too when we tell him what we are giving him.
"No throw-up medicine" is Zofran (for Nausea)
"Swish and spit" is Nystatin (this is swished in his mouth and spit- this is to prevent thrush)
"Pink Medicine" is Bactrim (this antibiotic prevents him from getting pneumonia)
"New Medicine" is Oral Cyclophosmide (this is the chemo drug he takes daily under his latest regimen)-- was new in July when he started and it has stuck.
"Other new medicine" is the new antibiotic he is taking for his GI infection-- for 8 more days.
And his latest Brodyism is "Easy-Peasy" which he usually says when we tell him it's time to take a particular med that tastes bad but he can now take without "psyching himself up" before hand-- for alot of his meds, when they were new he would get himself all worked up and worried about it tasting bad so much that he would be so worried about throwing up he would throw up....this was a big problem the first time he was treated and any time since then he had to start a new oral med.
Anyway-- next Friday is his "off" week, he only has to go in for labs--- he starts his next chemo round the Friday after next (it is a cycle that repeats every 4 weeks)- he is just over 1/2 way through his 3rd round.
Here is hoping we have an uneventful week-- at our house generally speaking, no news is good news.
Bill
Brody's right nephrostomy tube was capped until wednesday. On wednesday Brody didn't feel too good. He vomited and was tired and wanted to take a nap-- we went ahead and hooked his nephrostomy bag back up to his tube (in case this was making him feel bad). When he woke he had a slight fever-- almost 101 which had us nervous enough to call Brody's Oncologist and get Brody admitted Wednesday night-- they took blood, urine, and stool cultures-- by the time he got to the hospital his fever was gone and he was feeling fine. Him and Trish got to bed about midnight.
His blood and urine came back fine but his stool showed a potentially dangerous bacteria (Trish can tell you more about this if she gets time)-- so they started him on an antibiotic that works well on it. His counts were low (normal low for the chemo he has been on) but not so low he couldn't start his next chemo round. Since he was feeling fine and his counts were high enough they gave him his normal IV chemo on Thursday rather then hanging out late in the day on Friday too. Dad (me) stayed the night on Thursday night-- the doctor wrote his discharge out about 8 am Friday morning and we just had to wait for Brody to wake up to get out of there-- he woke up about 10:45am (he was up till almost midnight thursday watching Phineas and Ferb) and we were out of there before noon.
He did have an ultrasound of his kidneys on Thursday but we did not expect any hydro nephrosis (water around the kidney) since he had his bags back on. We will likely try capping them again in a week or so.
Brody is feeling fine but has to take an oral antibiotic every 6 hours which has a bad after taste-- he hates it but our tough guy takes it without a problem... he has been chasing it with "red stuff", grape juice, and goldfish crackers to get rid of the taste. Thankfully the amount he has to take is small (3 ml)
He has been feeling fine since Wednesday evening.
Trish's post about Brody's words reminded me of his other Brodyisms for his meds... which we use with him too when we tell him what we are giving him.
"No throw-up medicine" is Zofran (for Nausea)
"Swish and spit" is Nystatin (this is swished in his mouth and spit- this is to prevent thrush)
"Pink Medicine" is Bactrim (this antibiotic prevents him from getting pneumonia)
"New Medicine" is Oral Cyclophosmide (this is the chemo drug he takes daily under his latest regimen)-- was new in July when he started and it has stuck.
"Other new medicine" is the new antibiotic he is taking for his GI infection-- for 8 more days.
And his latest Brodyism is "Easy-Peasy" which he usually says when we tell him it's time to take a particular med that tastes bad but he can now take without "psyching himself up" before hand-- for alot of his meds, when they were new he would get himself all worked up and worried about it tasting bad so much that he would be so worried about throwing up he would throw up....this was a big problem the first time he was treated and any time since then he had to start a new oral med.
Here is hoping we have an uneventful week-- at our house generally speaking, no news is good news.
Bill
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