Sunday, February 27, 2011
Saturday, February 26, 2011
Nothing to report
Sorry forl ack of updates. We took Brody in on tuesday for a urinalisis. He had less blood in his urine... however when asked how much he had drank each day we couldn't answer since they didn't tell us to keep track.... we were also not confident he had got enough to drink while at Trishs parent house for he weekend.. Brody is a sippper so it is hard to get him to drink much anyway. They told us tues they wanted him to drink 64 oz per day... this is alot for him... we have struggled to get him to drink that much and a side result of this is he hasn't been hungry since he is drinking so much milk and oj... so his appetite is alot less... they want to recheck his urine on monday....so that's where we are now.... still waiting....
Boys are continuing to have fun every day...
More later....
Bill
Monday, February 21, 2011
Freezing Rain and Snow Prevented Us From Getting Home to Toledo Today
Well today we were suppose to make the trip from Cincinnati area to Toledo Ohio and stop by hospital in Toledo once we got back to have Brody provide another urine sample. It was in the upper 40's and raining when we left Cincinnati area but by the time we made it to Lima Ohio (an hour and half from home) the roads were just a sheet of ice. I was hoping we would get much closer to Toledo before hitting the freezing rain and snow that I knew was in Toledo area. Thought maybe it would be just warm enough for most of the trip to avoid the bad roads for majority of the trip. But nope. Oh well, we ended up stopping in Lima and getting a hotel rather than risking the drive. The hotel is really nice. Very clean, friendly staff, and a indoor heated pool. Boys and I went to Walmart very close to hotel and got some swimming suits and then came back and had a great time in the pool. Then we went out to eat at Texas Roadhouse right next to the hotel. Jaden was quite excited about this since that is his favorite restaurant. He loves their rolls and butter, the peanuts, the ribs, and that it's pretty loud in there so I don't have to bother telling him to be quiet over and over again. (Usually my kids are the loudest thing in any restaurant and I am constantly trying to settle them down but not at Texas Roadhouse. They have loud country music that drowns out any noise from my kiddos so I don't have to worry about kids annoying anyone with their loudness). Anyhow we really wanted to get home tonight (we miss Bill) but we made the most of it and just had a good time this evening. Hopefully this weather will settle down soon and we can make it home tomorrow.
Brody has been having more blood in his urine again today. Hopefully we will get to meet with the urologist tomorrow and figure out what is going on. I called the hospital today and spoke with a nurse in the Peds oncology wing and told her we weren't able to make it to hospital today to provide urine sample for them to check for blood but that we are still visually observing blood in the urine. I asked her to speak with our oncologist about going ahead and arranging the consult with the urologist for Tuesday(tomorrow) or Wednesday.
Anyhow, let's hope we get some news soon as to what is causing the blood in urine.
Hope all my friends in Toledo with no power in this cold, icy weather get power again soon.
Time to get some shut-eye.
Sunday, February 20, 2011
More blood in urine over the weekend
The boys went to my Mom and Dad's for the weekend while Bill and I were both scheduled to work for the weekend (turned out that I ended up getting very sick with nausea, vomiting, and diarrhea on Sat though so ended up not going to work Sat. Feeling much better today, Thank Goodness). I am headed to Cincinnati area to go pick up the boys right now. Unfortunately riding in a tow truck right now though. The van started having a bunch of steam coming out from under hood as I was coming through Lima Ohio. I was 96 miles from my parents house and thank goodness AAA plus tows up to 100 miles at no charge to me. So the tow truck will get me and the van the rest the way. I called my Mom before I left and she told me that Brody had a little bit more blood in his urine that they could see this weekend. He goes tomorrow for another UA. If blood still tomorrow Brody will see urologist. I want him to see urologist regardless since still blood just yesterday. I'll post again tomorrow as soon as I know what's next for Brody.
Right now I am really looking forward to just making it to my Mom and Dad's to see the boys again. Missed them a lot this weekend but was really glad they were at my parents when I suddenly got so sick.
Hope everyone had a great weekend!
Friday, February 18, 2011
Feb 17
Brody has been drinking alot of fluids this week and it has been a few days since we have seen any blood in his urine. We are obviously hoping he had some type of irritation and it has passed.
Brody continues to feel well. He has continued to be finicky about his foods. It is quite a challenge to get him to eat any of his non "go to" foods.... today he was on a grilled cheese sandwich kick.
He has started putting back on some weight (assuming our scale is correct)... I weighed him at 37.5 pounds today... to put that in perspective he weighed 38.6 pounds the day he was diagnosed last year and has weighed as little as 34 pounds during his treatment. He looks taller now so is still pretty thin... his arms and legs are still pretty thin.
We continue to try to have fun every day....
More later....
Bill
Monday, February 14, 2011
Blood in Urine
Friday evening, Brody started crying for us from the bathroom as he was just finishing peeing. He discovered he had blood coming out and some had gotten on his leg. The red stuff on his leg is what upset him. He wasn't as worried about the blood part (in his mind he thought he had simply eaten too much ketchup and that's why it was red but he didn't like it on his leg). Bill and I were of course very alarmed. We called the hospital and were told since he did not have a fever nor any pain nor was bleeding very much that we needed to bring him in first thing Saturday morning rather than Friday night. We took him in Saturday morning and they got a urine sample to do a UA and culture. The results came back clear for infection but there were red blood cells in the urine (blood in urine). There was not a lot in there though so we were told the first treatment was lots of fluids (hydration). Brody took cyclophosphamide (chemo drug) and radiation treatments to treat his cancer. Both of these can cause bleeding in the bladder. Generally it doesn't happen this far out from treatment but it can. So if this is the culprit and it's a mild case of bleeding then he may heal on his own with lots of fluids to help keep down irritation of the bladder. The worry though is that Brody may be relapsing/have resistant cancer cells already. Brody's doctor stated that he is "very concerned Brody may be relapsing." Scary, scary, scary. I took another urine sample in today to be analyzed to see if there is more blood in there and whether there is more or less than the last sample. We are to take another sample next Monday and keep Brody well hydrated. If there is still bleeding next week then Brody will get general anesthesia and the urologist will feed a small camera up through Brody's urinary tract to get a real good look at what is happening. Brody was scheduled for surgery to have his port removed (thing in his chest they administered his chemo through) tomorrow. But that surgery has been canceled in case Brody may still end up needing that again soon. All of this is very upsetting. I can't stop crying everytime I get a second or two to myself. I am trying to think positive though even though I am very worried. Deep breaths and just getting the crying out every once in awhile are helping. I think I'm coping as healthily as can be expected of any Mom going through this. So don't anybody worry to much about how I'm dealing with things. I'm handling it. One thing that helps me though is for folks not to constantly ask me, "How are You doing?" I know everyone that asks is just trying to be a good friend and let me know that they are there for me if I need someone to talk to. It's sweet and I really am very thankful to have such wonderful friends and family to help support all of us through this but it really is hard for me personally to talk about my feelings all the time when I am going through something very difficult. I am putting my feelings right here on this blog and it helps me to write them out but I don't want to talk to everyone about how I am doing when I am just trying really hard to be strong, think positive, take deep calming breaths and think happy thoughts. That is how cope with this. So please as a favor to me and to help me, please don't ask if I am ok. Sounds like a strange request, I know. But it really did drive me crazy when Brody was first diagnosed having everybody wanting me to talk and discuss how I personally was coping. It just kept getting me depressed and I don't want to go through it again. I am a very open person and will share my feelings frequently on this blog but just don't want to talk about them all the time. Feel free to talk to me about anything but how I'm coping or feeling about the situation. I am worried, scared, angry, sad, but hopeful that Brody will be just fine and that his bladder is just irritated. Brody feels perfectly fine right now and is very happy. I just want to try to focus on just being happy and enjoying spending time with Brody rather than being forced to think about all of my feelings constantly when some of them just aren't pleasant.
On a brighter note, we all had a wonderfully fun weekend at an Indoor Waterpark despite all this recent disturbing blood in urine business. My sister, Julie, her husband, their 2 girls (Ella and Ava) and my Mom and Dad were able to be there too. We also took one of the boys friends, Kyle, with us. The boys all had a GREAT time. So did Bill and I. It was just so nice to see all the kids just having a blast. It was really nice to have friends and family there too enjoying the weekend with us.
Now time to see what we can do for fun today!
Tuesday, February 8, 2011
The boys sledding last week
Wednesday, February 2, 2011
CT Scan Results Good
We got Brody's CT scan results back. Doc said it all looks good. Everything clear except the lymph node that was still enlarged last time. This time that lymph node is smaller. Oncologist thinks it's still very possibly all dead cancer cells in that lymph node and surgery too risky to remove it at this point. So plan is that Brody is to be considered done with chemo now still and he'll have his chest port removed sometime in next few weeks. And he will get CT scans every three months. So one minor surgery left and some oral meds he'll take for 6 more months and then he should hopefully be all done if no recurrences. Brody got his cast off yesterday too and was so excited to finally play in the snow and get in the hot tub again.