Striking Back with Cody: Good News From Texas!!!

Tuesday, June 28, 2011

Good News From Texas!!!

There really hasn't been too much to blog about recently so sorry for not posting in awhile. I am happy to say that we have some great news to share.

Cody flew to Texas on Sunday June 26th. He was scheduled to have labs, a chest x-ray and a PET Scan done at MD Anderson Cancer Center on Monday June 27th, followed by an appointment with Dr. Anderson. This was not really a trip they were looking forward to. There is always a chance that the chemo isn't working and that the cancer has grown, news no one wants to hear. The last time they went for scans there were 3 hot spots they were going to keep an eye on, one up by his left clavicle in a lymph node and the other 2 down in the abdominal and pelvic region where the 2 larger tumors were removed back in September.

Dr. Anderson had good news to share. The tumors have shrunk "considerably". He was very pleased with the way things looked, in fact, Cody's blood counts were the best Dr. Anderson has seen in Cody since he began treating him. This is great news. Cody hasn't needed a blood transfusion or a platelet transfusion since back in February. Dr. Anderson did make a couple little changes. Cody has had to have his blood drawn once a week, now he will only need it drawn every 2 weeks. Also, Cody has been taking a chemo pill (Cytoxan) 5 days a week Monday-Friday. He will now be taking it everyday. He will continue to go to Dr. Perez once a month for his IV Chemo Infusion either in Fallon or Carson City, NV like he has been doing. The chemo is obviously working so they want to keep him on the same chemo regimen for now just adding those 2 days of the chemo pill.

Cody does need to have his central line removed. Cody has had problems with certain tapes and skin protectants since he had the line placed over a year ago. Certain products cause an allergic reaction so they have had to be careful about what they use when changing the dressing. For the last few weeks Cody's skin has been really itchy, red and irritated where the dressing is. Dr. Anderson said there is a slight infection so the line needs to come out. They are not worried since it looks like they caught it in time but the line does have to come out. There is a risk the infection could spread if it isn't removed. It is a surgical procedure to remove the line so once they get home they will figure out when and where to have it removed. It will be good to have the Broviac Central line removed it will free Cody up a bit. Since the line can't get wet he has had to cover it in order to shower and it needs to be flushed out daily and the dressing changed once a week. It will be nice to not have to worry about it anymore. The downside to having the line removed is he will need to be poked every time he has a blood draw or his IV Chemo, but now they are only doing blood draws twice a month and the IV infusion once a month it really won't be that bad.

It was a short trip but well worth it to get such good news. Lets hope the chemo keeps doing it's job and Cody keeps tolerating it as well as he has been. The next scan will be done sometime in October so for now it's time to go home and enjoy the summer!!!

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A little about the Cancer

Desmoplastic Small Round Cell Tumor, also know as DSRCT, is considered a childhood cancer that is predominantly found in boys and young adults. It is an extremely rare, highly aggressive cancer that is usually found as masses in the abdomen. Desmoplastic small round cell tumor is frequently misdiagnosed which is why the prognosis remains poor. This is an aggressive, rare, fast spreading tumor.

There is no standard protocol for treatment but it usually includes aggressive Chemotherapy, Radiation, and Surgery.

A special thank you...

Russ and Janae want to personally thank their families for being so supportive. They wouldn't be able to do this without each and every one of you. There have been so many donations coming in and fundraisers being put together by members on both sides of the family. Thank you so much for all the love and support.

"You don't choose your family, they are God's gift to you, like you are to them" - Desmond Tutu

A big Thank You, also, goes out to the the Town of Winnemucca. The community has pulled together in so many ways to show their support it is overwhelming. Thank you!!!

Thank you to Connors Drilling and all of the employees. Connors asked the employees, Russ's co-workers, for a voluntary paycheck deduction that would go to Cody's Cancer Fund. A big thank you to all the many generous people who participated. Thanks to you a good chunck of money was raised to help with Cody's medical costs.

Upcoming Fundraisers

Striking Back with Cody Wristbands Awareness wristbands can be purchased at the HAMS in Winnemucca for anyone interested in showing their support. Family members also have awareness bands or know where to get them. 2 Brothers Communications Fundraiser 2 Brothers communications Verison Wireless 508 W Winnemucca Blvd. Ste B Winnemucca NV, 89445 (775) 625-2355 April 1st through May 31st 2 Brothers Communications will donate a portion of sales for ANY new activation or upgrade (no stipulations) to the families of Cody Nielson and Kylie Hilbish. Verizon Wireless has also agreed to match the donation with a contribution of their own.