Brody is excited to be getting his nephrostomy tube out today. Surgery isn't fun but this one is a good news surgery.
Join TEAM BRODINATOR in the CURESEARCH WALK in Toledo, Ohio on Sept 7th, 2013
TEAM BRODINATOR will be participating in the Curesearch Walk in Toledo, Ohio again this year. We are seeking friends and family willing to join our team and/or donate to Curesearch. Can't make it to the walk on Sept 7th? No problem, you can still join Team Brodinator as a Virtual Walker and work with the rest of Team Brodinator raising funds for CureSearch to support Children's Cancer Research. Join us as we celebrate and honor children from the Toledo area who have been affected by children's cancer. This very special day will include prizes, music, food, and fun activities for the entire family! Please encourage your friends and family to join us as we raise funds to reach the day when every child with cancer is guaranteed a cure! Register for the walk today or donate to Curesearch to support children's cancer research!
TEAM BRODINATOR was started to show support for Brody Pizzifred and all children who have been affected by Childhood Cancer. Brody was diagnosed with rhabdomyosarcoma in March 2010 a few days after his fourth birthday. He was treated for about a year with a combination of chemo, multiple surgeries and radiation treatments. He enjoyed a year of remission from the disease. Unfortunately, the cancer has recurred. We received this devastating news on April 30th, 2012. Recurrent rhabdomyosarcoma has an extremely poor prognosis. Very few children with recurrent rhabdomyosarcoma survive another year from a diagnosis of recurrent rhabdomyosarcoma. Brody has endured ongoing chemo and multiple surgeries since the recurrence. He is battling for his life and we are so proud of how well he has handled this tremendous battle. He lives life in the moment and doesn't dwell on all the terrible things he has had to endure. He appreciates and enjoys each good day. CureSearch for Children's Cancer supports children's cancer research. Brody is one of many children battling one of many types of childhood cancer in great need of more research. Many promising research investigations and promising clinical trials to treat children's cancer are put on hold each year due to lack of funding. TEAM BRODINATOR will be participating in the Toledo CureSeach Walk on Sept 7th and raising funds to help one day cure childhood cancer. We welcome you to join our team and/or make a donation to CureSearch.
The Toledo Curesearch Walk will be held Sept 7th, 2013.
Centennial Terrace
5773 Centennial Road
Sylvania, OH 43560
Registration/Check-in
9am-10am Sept 7th, 2013
Opening Ceremony and Walk
10am Sept 7th, 2013
Raise $100.00+ to receive the official Curesearch Walk T-shirt
To Donate Online:
Go to http://www.curesearchwalk.org/toledo/teambrodinator
-You will see our team members listed, Choose and click on a Team Member to donate to or Make a General Team Donation
To Donate Via Phone:
Call 301-589-0971
To Donate Via Mail or Fax:
Use this Link to print a Donation Form
https://dl.dropboxusercontent.com/u/37215226/Team%20Brodinator%20Donation%20Form.pdf
To Walk with Us and/or Join TEAM BRODINATOR to raise funds for Curesearch:
Go to http://www.curesearchwalk.org/toledo/teambrodinator
-Click on the green link "Join Team" located to the right of Brody's picture. You can also call or text Tricia (Brody's Mom) on her cell phone at 419-304-6784 or email Tricia at teambrodinator@gmail.com and she will assist you with registering for the walk and joining Team Brodinator. Please call, text, or email Tricia to let her know you are joining Team Brodinator and provide her with your contact info so she can keep you informed of coordinated efforts of Team Brodinator.
Here is a link to a flyer you are welcome to print and distribute to friends and family with info on how they can join us in supporting Curesearch and children with cancer. The second page is a Team Brodinator t-shirt order form. T-shirt orders need to be in no later than August 28th.
To Order a TEAM BRODINATOR T-Shirt:
Please send the following info to Tricia Pizzifred (Brody's Mom) no later than August 28th, 2013.
T-shirt Costs: $12.00 per t-shirt if not shipping, $12.00 plus shipping costs if required to ship. You do not need to pay for your t-shirt prior to ordering. We can collect payment later.
Tricia's Contact info: Phone or text 419-304-6784, E-mail: teambrodinator@gmail.com, Fax 888-363-3695
Here is a link to a picture of Brody wearing his Team Brodinator t-shirt at last year's walk. It is also a printable T-Shirt order form if you would like to print and collect orders from friends and family, please feel free to use it. The t-shirts this year will be very similar to the one in the picture. But, the design on the front of the t-shirt will be changed to make the Gold Childhood Cancer Awareness Ribbon more prominent. We want to help make Gold the New Pink! The back of the t-shirt will have TEAM BRODINATOR in white lettering.
https://dl.dropboxusercontent.com/u/37215226/Team%20Brodinator%20T-shirt%20Order%20Form.pdf
Thank you!
Brody finally got to come home from the hospital today! It was a beautiful day too (sunny and 70 degrees). Brody played some basketball, ran around in the yard with giant nets catching his brothers and Lucy with them, played with the dogs, played on the swingset in our backyard, and rode on our go-cart. We made a fire in the fire pit tonight too and roasted marshmallows and hot dogs. We are all very glad to be at home sweet home. And, even happier to see Brody feeling good and acting like himself again.
Brody is continuing to feel better and better. His kidney function is back to normal too! We are in the hospital still for one more day of fluids and antibiotics. Tomorrow Brody will finally get his long overdue chemo. He has been off of it for almost 4 weeks due to all the recent issues with blood counts and kidney problems. After chemo tomorrow, Brody will go home with oral antibiotics for awhile. Next week if all is going well, we'll start the process toward determining if Brody will be able to have his external nephrostomy tube removed and just have the internal stent. It's a big relief to see Brody feeling so much better and to hear his kidney function labs are back to normal too.
Brody has been continuing to get better. His urine is getting more and more clear. His kidney function labs are improving. He is feeling much better and more energetic. He is eating some today too (had some strawberries, yogurt smoothie, pineapple, chocolate chip cookie, milk,cheez its, and cheetos).
We were told this morning that it's an Enterobacter infection we are dealing with. One of Brody's antibiotics was stopped since getting this info. He is staying on the other one (Zosyn). It seems to be working well. Brody has not had fevers today.
Brody has been feeling better today than he did yesterday. He has not had any very high fevers since early this morning. His urine looked like pure blood (more than I have ever seen following surgery for stent or nephrostomy tubes) yesterday and this morning. This evening his urine is starting to look much more clear (not thick and bloody).
Brody is still very weak and tired though. He needs help sitting up and getting in and out of bed. He keeps saying, "why does my body feel so weird. " He was having some headaches tonight and nausea. He really hasn't eaten much of anything today. Hopefully he continues to get better and his appetite and strength will return soon.
The infectious disease doc stopped by earlier today and let us know that each of the urine cultures that have been collected have been reported back as gram negative rods. The blood cultures are clear. It appears he is definitely dealing with a gram negative infection and it was not just a contaminate of the urine collected from the tube. The nurse told me this morning that the urine culture from his nephrostomy tube was positive for E. Coli. The infectious disease doctor said they are not sure yet if it's E. Coli. So far they just know it's a gram negative rod and they "presume it's E. Coli. "
Brody will get repeat labs and cultures tomorrow. Here's to hoping for negative cultures and improved kidney function.
Brody had very high fevers most the night. He felt okay despite this. He was just mostly tired. He has been sleeping, sleeping, and sleeping. This morning his fever is much lower (low grade fever). He is still sleeping right now. His kidney function labs have shown that his kidney function has gotten significatly worse since yesterday. And, we just found out this morning that his nephrostomy tube cultures are growing E. Coli. Infectious disease doc has been consulted to determine most appropriate antibiotics to treat E. Coli in a kidney with acute renal failure. I was just told they have decided to go with Zosyn and Linezolid.
It's most likely that Brody's kidney was introduced to the E. Coli infection during last weeks surgery. When Brody came in yesterday morning to have the surgery, he was not acting like himself. He did not yet have a fever but he was unusually tired (excessively tired and weak acting). His white counts were high too. (The elevated white counts is what prompted the oncologist to collect samples for culture after Brody's surgery yesterday). His surgery yesterday was to place an internal stent from his kidney to his bladder. He already had an external nephrostomy tube (a tube that runs from his kidney, through his back and empties into a bag). Brody has had both of these before. He prefers the internal version rather than external. The external one was placed last week on Thursday. The eventual hope was to be able to remove the external tube and Brody would only have the internal one. Right now he has both. Anyhow, based on how Brody was feeling before surgery, his white counts being elevated before the surgery and then immediately after surgery feeling bad and that his nephrostomy tube culture is growing E. Coli, it's most likely that he developed the infection last week during the surgery to place the nephrostomy tube. Bill and I have not yet had to do any dressing changes nor flushes of the tube since it was placed. The potential opportunity that we could have introduced this infection does not exist. It most likely occured during the surgery last week. However, I am wondering if the E. Coli might be a contaminate. It's possible the culture could have been contaminated. The opening for the drain of the nephrostomy tube could have been contaminated with E. Coli and then the urine flowed through this into the collection cup. You cannot completely disinfect the drain opening/closure without dipping it in a cup of disinfectant. The nurse who collected the sample to be used for culture did not do this. She cleaned it with betadine using a swab all around the outside where hands etc would have to touch the opening/closure valve. There are parts where you have to open the tube to drain it that cannot be cleaned with a swab. The sample from the tube was taken right after his surgery yesterday. The nephrostomy tube he had last week was removed during yesterday's procedure and a new external one was placed as they were placing the internal one. So since this one was so new when the sample was drawn there was not much opportunity for E. Coli to have contaminated the part of the tube opening that cannot be disinfected with just a swab. If E. Coli is the culprit agent and Brody's kidney is infected with it, this infection was most likely introduced during his surgery last week.
Please pray, cross fingers, make a wish etc for Brody to have complete recovery from all of this.
