Back in Hospital

Brody developed a low grade fever yesterday that soiked to 103 last night. He also been tired and coughing.  When that happens they admit Brody for antibiotics and labs.  Trish and Brody came in last night. Brody got a chest xray to check his lungs.  Had a small fever earlier today.  Will likely be here a few days.  His counts are low so he will be skipping his oral cyclophosmide today.

Geordi and Jaden did home school with me (Bill)  today at the hospital ...  We gave Brody the day off.  Boys did pretty good.  Finally realizing they finish faster if they don't argue.

Boys had alot of fun this weekend camping..  Sorry i missed it.

Writing this from my pbone so will be cutting this short.

More later,

Bill

Good CT Scan Results Today!

Brody had a CT scan today and we got results back right away.   The tumor is getting smaller.   It's about 1cm smaller than it was at his last CT scan and since starting the new Chemo Regimen after failing on previous ones.   And Brody has been feeling wonderful this week.  

We are celebrating the wonderful news and enjoying the fact that Brody is feeling so much better by camping at a nearby campgrond right on the river shore.   My Dad came up for the weekend and brought his camper with him.   Unfortunately Bill has to work all weekend but at least he can hang with us for a few hours in the evening.  

So excited about the CT scan results and it feels so good to see Brody feeling so much better.   YAY!!!!!!!!!!

September is Coming and So is the CureSearch Walk. September is Childhood Cancer Awareness Month. Support CureSearch and Help Save Lives of Children witth Cancer

September is Childhood Cancer Awareness month.  Childhood cancer takes the lives of more children than any other disease in the U.S.  More than 13,500 children are diagnosed with cancer each year and nearly 25% of children diagnosed with cancer will die within 5 years of the diagnosis.  Three out five childhood cancer survivors suffer from long-term side effects.  The number of children diagnosed with cancer in the U.S. each year puts more potential years of life at risk than any single type of cancer.   The objective of Childhood Cancer Awareness Month is to put a spotlight on the types of cancer that largely affect children and to help raise funds for research and family support. 

  Children with cancer cannot be treated simply as "smaller adults." First, the cancers that strike them are very different from the more common adult cancers, having different causes and needing different treatments. Also, children are being treated while in crucial stages of the development of their bodies and minds, complicating the effects of treatments and often resulting in life-long complications. 

 Federal funding for childhood cancer research is predominantly allocated through the National Cancer Institute (NCI).  Each year, Congress approves the amount of money that the National Institute of Health will receive for research initiatives.  Cancer will be funded in 2012 at $5.4 billion.  In 2010, the NCI reported funding for childhood cancer research was approximately $197 million.  However, this estimate could be regarded as liberal as some of the associated research may not be perceived as directly benefiting childhood cancer.  Other more conservative estimates put federal childhood cancer research funding as low as $30 million annually. 

 To put this into perspective, the NCI allocated $631 million on breast cancer research in 2010.  Other NIH Institutes funded breast cancer at a level of $133 million; and the Department of Defense, which also supports breast cancer research allocated an additional $150 million.  As a comparison, breast cancer with its overall survival rate of close to 90% and average age of diagnosis of 61 received $914 million in Federal research funding in 2010.  This was in addition to the funds raised by breast cancer organizations through their pink ribbon campaigns and private donations.  It is estimated that the success of these campaigns raises approximately $256 million annually in the combined assets of the top four breast cancer organizations.  The success of the pink ribbon campaign and its resulting funding for breast cancer research has resulted in an increase in the 5 year survival rate of that patient population.  Their strength as advocates has resulted in a strong position for both federal and private research funding. 

 September is Childhood Cancer Awareness Month.  It is a time to increase the awareness of the incidence and devastation of this disease on America’s children.  By raising awareness of the fact that childhood cancer remains the number one disease killer of America’s children, we can raise the awareness of the need for greater research funding.  Like breast cancer, childhood cancer has an international symbol, the gold ribbon.  Proudly wear a gold ribbon and help increase childhood cancer awareness and support.  Help make the Childhood Cancer Awareness Gold Ribbon, the new Pink!

 In addition to wearing a Gold Ribbon in September, consider participating in the upcoming Toledo CureSearch Walk for Children’s Cancer on Sept 8^th, 2012.  Funds raised from the CureSearch walk will directly benefit children’s cancer research.  Brody has formed a team for the Toledo CureSearch Walk.    Brody was diagnosed in March of 2010 with rhabdomyosarcoma (a relatively rare form of cancer but much more common in children than adults).  He was treated for about 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 30^th, 2012.  Recurrent rhabdomyosarcoma has an extremely poor prognosis.  The five year survival for children with recurrent rhabdomyosarcoma is less than 5-10%.  More than 50% of children with recurrent rhabdomyosarcoma will succumb to the disease within less than a year.  Brody would not be here with us today without the research efforts of the Children’s Oncology Group (COG). The COG is the world’s largest organization devoted exclusively to childhood and adolescent cancer research.  Today, more than 90% of the 13,500 children diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions.  The COG has nearly 100 active clinical trials open at any given time.  These trials include front-line treatment for many types of childhood cancers, studies aimed at determining the underlying biology of these disease, and trials involving new and emerging treatments, supportive care, and survivorship.   The COG receives funding from the NCI, private donations and organizations such as CureSearch for Children’s Cancer.  Brody would love to have your support at the Toledo CureSearch Walk this year.  We have detailed information on the upcoming Toledo CureSearch Walk in a previous blog post.  Please see it for more details concerning the Toledo CureSearch Walk.  Every donation to CureSearch helps.  Even if you do not live in the Toledo area you can still help support Team Brodinator and Toledo CureSearch walk.  It’s a great cause.  Together we can all make a big impact. 

Sources: www.Childcancer.org and www.candlelighters.org and www.children’soncologygroup.org

 

Doing ok

Brody went to hospital on Friday for labs (which were good) and Chemo. No nausea and we were out of there in about 3 hours this time. Brody has continued to take a chemo drug (cyclophosmide) orally each day and has been doing good about taking it.... he doesn't like the taste but is used to it enough that it doesn't cause any anxiety anymore. He just toughs it out.

Brody doesn't have any IV chemo next Friday but is going in for labs and another CT to see how this chemo is working.

Boys started doing home school last Wednesday-- still adjusting to this-- they are very easily distracted and seem to think they can interrupt our schedule at any time "I'm hungry" -- they argue about some of the assignments and are making the school day take longer then it needs to be... need to get them motivated to finish.

Finally cooled off some- has been a very hot summer for northwest Ohio and August is usually pretty bad. Jaden and Geordi got bb guns in the last year from their grandpa (Trish's dad)-- not any good spots in out yard to shoot them though-- our neighbor's yard borders the woods and Trish when out with a saw and cut some of the branches out of the way so the boys had a clear line of sight out to the woods and then hung some targets from clothes line (a few milk jugs, powerade bottle, and an aluminum can)-- the boys spent about an hour shooting at them.

Brody isn't nearly as good with the real gun as he is at call of duty on the PS3.... but still had fun. Geordi was already a decent shot (he did some bb gun shooting in cubscouts). Jaden was having some problems at first with his "pump action" shotgun bb gun at first since it doesn't really have a sight on the barrel.  He did much better with Geordi's Red Ryder bb gun.

Other then that-- not a lot to report. We continue to focus on having fun as much as we can.

More later

Join TEAM BRODINATOR in the CURESEARCH WALK in Toledo, Ohio on Sept 8th, 2012

We will be participating in the Curesearch Walk in Toledo, Ohio again this year.  We are seeking friends and family willing to join our team, TEAM BRODINATOR,  and/or donate to Curesearch.  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!

The Toledo Curesearch Walk will be held Sept 8^th, 2012.

Pearson Metropark

761 Lallendorf Rd.

Oregon, OH 43616

Registration/Check-in

10am-11am Sept 8^th, 2012

Opening Ceremony and Walk

11am-1pm  Sept 8^th, 2012


Registration is $10.00 for Walkers  Ages 16 and Up  and Free for those 15 and Under.
You can also register for the walk as a Virtual Walker if you are unable to actually attend the Walk itself on Sept 8th.  A Virtual Walker would work to raise funds for Curesearch just like other Walkers.  

To Register as a Walker or Virtual Walker for Team Brodinator online, go to 

http://www.curesearchwalk.org/toledo/Brodinator

Raise $100.00+ to receive the official Curesearch Walk T-shirt

To Donate Online:

Go to http://www.curesearchwalk.org/toledo/Brodinator

-You will see our team members listed next to Brody's picture, 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.dropbox.com/u/37215226/Curesearch%20Donation%20Form.pdf

To Walk with Us and/or Join TEAM BRODINATOR to raise funds for Curesearch:

Go to http://www.curesearchwalk.org/toledo/Brodinator

-Click on blue link "Join our Team" located right under "Welcome to the Team Page of Team Brodinator."

Flyer You Are Welcome to Print and Distribute: 

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, the Children's Oncology Group, and children with cancer. 

https://dl.dropbox.com/u/37215226/Curesearch%20Walk%20Team%20Brodinator%20Flyer.pdf

Information About Children's Oncology Group:

 The Children's Oncology Group (COG) is the world's largest organization devoted exclusively to childhood and adolescent cancer research. The COG unites more than 8,000 experts in childhood cancer at more than 200 leading children's hospitals, universities, and cancer centers across North America, Australia, New Zealand, and Europe in the fight against childhood cancer.

Today, more than 90% of 13,500 children and adolescents diagnosed with cancer each year in the United States are cared for at Children's Oncology Group member institutions. COG's unparalleled collaborative efforts provide the information and support needed to answer important clinical questions in the fight against cancer.

The Children's Oncology Group has nearly 100 active clinical trials open at any given time. These trials include front-line treatment for many types of childhood cancers, studies aimed at determining the underlying biology of these diseases, and trials involving new and emerging treatments, supportive care, and survivorship.

The Children's Oncology Group research has turned children's cancer from a virtually incurable disease 50 years ago to one with a combined 5-year survival rate of 80% today.  Their goal is to cure all children and adolescents with cancer, reduce the short and long-term complications of cancer treatments, and determine the causes and find ways to prevent childhood cancer.

Good week

Brody has continued to feel ok. He is still very finicky about food but has been eating relatively well for what he does agree to eat.

He got his labs and IV chemo on friday and his labs came back pretty good. He only got 1 drug on friday and it was a push (injected into his port at one time) rather then infused over time. He then had to get IV fluids for a little while after. The result was him only having to be at the hospital about 2 1/2 hours total rather then the 4+ hours the previous week (and what he has to do this coming Friday).

Other then that, very uneventful week (other then some thunderstorms on saturday night)-- boys have been playing alot and we Grandma and Grandpa and Trish's Grandma visit on Saturday and then Uncle Dan (Trish's brother) on Sunday.

Once again we will be homeschooling the boys. This is necessary in our case not only for Brody but because we don't want Geordi and Jaden bringing home every bug from school and getting Brody sick.. While Brody's immune system should not be as depressed under this chemo, it can still be dangerous for him to get the flu or whatnot and if he does get a fever he needs to be admitted to the hospital (we try to stay away from hospitals when we can avoid it).  We are looking at starting up our home schooling soon-- yes cutting summer short. Our plan is to hit it hard Mondays thru Thursdays and then take Fridays thru Sundays off (other then reading) since Brody will be doing Chemo on Fridays if he stays on schedule.

 Homeschooling the boys is alot of work (takes time) but is fun also and you get to spend extra time with the boys. We did this the year before last (when Brody was treated the first time). Geordi did 2nd Grade at home and Jaden did Kindergarten.... both boys were ahead in most subjects when they went back to public school last year. Geordi was a bit behind in writing- as Whitehouse Primary school taught cursive writing in 2nd grade and we didn't do this.... but both boys were well ahead in math and reading.

Not much else to report-- no news is generally good news for us.

More later...

More Twister

Twister Fun

Having Fun Playing Twister

Feeling mostly ok

Brody has had a good couple of days-- he had some "gut" pain on friday night but it didn't last too long. He is tolerating the new chemo ok. He got IV chemo on friday outpatient (at hospital about 4 1/2 hours)-- but didn't experience any nausea (this chemo is hit or miss in causing nausea)-- he either didn't have any or it was controlled by the zofran (anti nausea medicine he got).

He also gets chemo orally at home each day-- he only has to drink 2 ml (less then 1/2 a teaspoon) which helps. The first night was rough in that he is scared of any new medicine... it took about an hour of coaxing to get him to finally take it. He didn't like the taste of it but he finally took it. It has become easier each night since then.

He has been eating relatively well-- being very finicky though... He has been on a French toast kick recently-- this at least has alot of calories and protein (eggs). 

One benefit of this new chemo is that it isn't as "toxic" as his earlier chemos. His counts don't drop off like the more toxic ones so as long as this holds the tumor at bay and hopefully starts to shrink it, he should feel better on this chemo then any of the previous ones so far. This chemo works differently then previous ones also-- I don't fully understand it so will let Trish explain it at some point rather then put out incorrect info.

Since it is less toxic, Brody doesn't have to go back to hospital for labs as often-- his next appointment is Friday for IV chemo and labs.

Our biggest physical concern for him right now is an obstructed bowel. He "went" ok over the weekend but has been going less the last day or so-- he gets miralax to soften his stool and we have increased the amount we give him the last few days.

Still been kind of hot so we have been staying in alot. Brody still has his nephrostomy tubes and if he sweats his dressings may come loose-- this is a relatively big ordeal to replace and Brody doesn't like it at all.

We have continued on focusing on Brody having fun-- which means him getting his way most of the time.  I did get out our go-cart (we hadn't used it in so long Brody didn't remember us having it even though it takes up a fair amount of room in our garage)... and got it working-- had to rotate the tires as the drive wheel had very little tread left. I also had to adjust the throttle to get the clutch to work right (engine wasn't turning fast enough to fully engage the clutch)-- working fine now... We rode it around our (bumpy) yard (pics/vids coming soon) for about an hour or so last night when the sun got behind some trees. Brody liked it alot but I think he would like it better if yard was smoother... it goes pretty fast and dad drives a little crazy.

I think thats it for now...

More later..