No words to describe how awful this news is. SCARY!!!! Brody will be staying in hospital rather than heading home today. They are going to go ahead and start the part of the chemo regimen they were gonna start on Monday today instead. Glad they decided to go ahead and get CT scan this week rather than waiting and glad he can go ahead and start next part today. Pray and cross your fingers the drugs he gets this week work!
Friday, June 29, 2012
Sunday, June 24, 2012
Brody Continuing to Feel Good Most the Time
Sorry we haven't updated in awhile. Brody is still continuing to feel good most the time. We have had a lot of very hot weather around here recently. This has limited our funtime activities somewhat. We do not let Brody stay out in the heat for very long because if he starts sweating very much, the dressings for his nephrostomy tubes start to come loose. Brody hates the dressing changes for these so we try to avoid activities then that could result in this needing to happen more frequently. Brody has enjoyed hanging around the house the last couple weeks and playing with his brothers, Mommy, Daddy, neighborhood buddies, and our 3 dogs.
We were expecting to get another CT scan this next week but we were just told on Thursday we have to wait another couple weeks before they will do another scan. I was looking forward to the scan. I wanted to know if the tumor is continuing to shrink, stay about the same, or if it's gotten any bigger. The part of the tumor I can feel when I palpitate his belly seems to feel about the same size as it has been the past couple weeks. Pretty hard to tell much about the size of it this way though. But at least I can feel the top edge just below his belly button still and this is where I have been feeling the top edge the last couple weeks. I don't have as good of markers as a belly button for how far to the left and right I can feel it. I've been thinking about marking his skin with a sharpie where i can feel the outer edge on each side so we can better judge somewhat how things are going sizewise. But really, much of his tumor cannot really be palpitated very well.
Brody will head to the hospital tomorrow for more labs. We are not expecting him to need blood tomorrow so should be a short day there tomorrow. Then next week (the week with July 4th smack dab in the middle) Brody will be admitted for the entire week for chemo. Then the week after that he will get his CT scan. We plan to celebrate the 4th of July together next weekend. Not sure what all we will do but I'm sure it will involve fireworks, cookouts, friends, family and fun!
Thursday, June 14, 2012
Monday, June 11, 2012
Brody's Chemo Regimen Protocol was Changed Today
We just found out today that Brody's chemo regimen has been changed. We were expecting to be admitted to the hospital starting today for a total of 6 days and taking Ifosfamide and Etoposide (which would have been new drugs for Brody). But instead we are going to be repeating another round of Doxorubicin and Cyclophosphamide that he received at his last admission. These medications only require a one night stay at the hospital usually. Brody will get the Ifosfamide and Etoposide on his next admission though. He will be admitted the week of July 2nd for this regimen. Brody will get another CT scan in a couple weeks to check tumor response to chemo so far and evaluate if his nephrostomy tubes may be able to be removed or not. After Brody has time to recover from the round of Ifosfamide and Etoposide, he will be evaluated again to determine if surgery is yet a possibility to remove the tumor or not. Sloan-Kettering Tumor Board did review Brody's case. Oncologist there and here are in agreement as to chemo options for Brody and the surgeon at Sloan-Kettering states that surgery is not an option yet. Must shrink tumor more first. At this point, since chemo is working, then of course, shrinking tumor is best choice. (although I wish it coulda come out when it was much smaller when he was first diagnosed with the recurrence. Most oncologists and surgeons believe it is best to try chemo to shrink the tumor first though, not only to help make the tumor smaller and surgery easier but also so that they will know whether chemo is working or not. No matter when the surgery is performed, chemo has to follow for quite some time after the surgery and they prefer to know if the agents they are giving are effective/shrinking the tumor. If the tumor is removed before trying chemo, they can no longer see it to see if it is responsive to chemo or not and there generally are micro-metastases that aren't visible on scans that the chemo is needed to treat. It was very scary when all this started again to witness the tumor growing so fast and the chemo that was given initially was not working. The tumor was about the same size at recurrence as it was the last time surgery was performed to remove it during initial diagnosis. So my instinct was get it out now, while it's still small enough to be a possibility. But the surgeons refused to remove it without trying chemo to shrink it first and here we are in our present situation. Fortunately though, even though the tumor is far larger now, Brody does now seem to be responding to chemo. Hopefully it will shrink to small enough size to get it out surgically soon).
Brody is handling his Doxorubicin and Cyclophosphamide ok today. He has only vomited once so far and nausea since then seems to be pretty well-controlled with the meds they are giving for it. He has been complaining of double-vision for the last hour or so. His doctor thinks this is from the Ativan that they are giving to help with the nausea (along with other nausea meds as well). Brody is not seeing double if he keeps one eye closed. So he looks kinda funny squinting one eye so that he doesn't see double while watching his Phineas and Ferb right now. I have lost count of how many episodes of Phineas and Ferb he has watched today. Definetely his favorite toon these days. (and yes, Rich Tinsley, I agree that Brody has good taste in toon selection. I like Phineas and Ferb and his SpongeBob Squarepants too).
Please continue to pray for Brody. The prayers seem to be working.
Enjoying the View at Maumee Bay State Park
Brody Enjoyed a Week Off From Chemo
Brody has been feeling very good this past week and has had a lot of fun during his week off from chemo. We were fortunate to have the Whitehouse Cherry Fest going on this week too. Brody enjoyed the festivities there on Thursday, Friday and Saturday. He watched a circus act there twice, rode lots of rides over and over again, munched on Kettle Corn, watched his brother Geordi in a parade and was in awe at the Fireworks show on Saturday night. On Sunday we traveled out to the African Wildlife Safari Park again. Last time we were there Brody really wanted to feed the giraffe who unfortunately was not at all hungry the last time. On Sunday, we lucked out and the giraffe was hungry indeed. My Mom was able to travel up and spend most the weekend with us. We all really enjoyed spending time with her. She brought several care packages up with her from friends of mine from high-school. Boys were beyond excited to receive them. Completely overjoyed! I was also surprised when we got back from the Cherry Fest to have received very nice cards and quite a generous gift from my friends from work at Hearland Healthcare Services. Thanks! We are so lucky to have so many people praying and supporting us through this very difficult time. It's been a good week and was so wonderful to see Brody feeling good and just having fun.
Tuesday, June 5, 2012
Just Finished Putting Together Cool Lego Hulk He Got All the Way From CA
Thank you Theresa, Richard, Steph, Jenny, Ferris and Robin for all the fun, cool stuff from CA. Boys were very excited about package from CA and even more so once they started opening it. Thanks!
Monday, June 4, 2012
Sunday, June 3, 2012
Brody Fishing
We found some old fishing line, hook, and sticks while hiking along lakeshore. We fashioned our own fishing pole and Brody tried his hand at fishing. Unfortunately all we had for bait was some bread. Little minnows and some bugs took interest but no large fish. Oh well, it was fun anyway.
Brody Getting his Haircut
Brody's hair has been falling out quickly. He had been very resistant to cutting most of it off this time even though he's been constantly bothered by it falling out. He finally agreed late Saturday to let Barbie go ahead and cut most of the rest of his hair off. I think he's still just as cute without hair, of course. But Brody wishes he could keep his hair. (so do I but the hair loss is small potatoes compared to all the other things he has to endure so I won't worry about the hair. got enough worries)
Friday, June 1, 2012
Brody's Tumor is Shrinking, Yay!
Brody had a CT Scan today. We got the results back today that his tumor has gotten smaller since switching to the new chemo. At last CT scan the tumor was 11.5 by 8.5. This time it is 10.5 by 8. So things are finally headed in the right direction! Brody was ecstatic at the news today as well. And was even more excited when the doctor told him he did not have to come back into the hospital at all next week. Not even for labs. Brody gets a break until June 11th. He will be admitted for chemo for 6 days starting June 11th. He will get new drugs he has not had before at this admission. He will get Etoposide, Ifosfamide and MESNA that week. Then he will get 3 week break from chemo and will be admitted to do the Vincristine, Adriamycin, Cyclophosphamide and MESNA again. He will alternate between these drugs every 3 weeks. Brody handled the Vincristine, Adriamycin, Cyclophosphamide ok. We are nervous about how he will do with the Etoposide, Ifosfamide and MESNA. This part of regimen is known to cause a lot of nausea and vomiting. Brody will receive lots of nausea prevention meds to help. We hope it will prevent it from being too bad.
Brody has been feeling much better the last few days. More energetic, less painful episodes (no pain last couple days), and he's eating more.
We plan to take the time to just have fun this week while Brody is feeling so much better.
Thanks to everyone for all the prayers and support. Keep the prayers going. I think they're working!
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